please rersearch msm, but don't rely on google search or main stream news I remember story with someone bitten by a deadly spider and they cure it with MSM (chlorine dioxide) good luck
Speedy recovery Gareth! You are an intelligent person and you did the right thing to your health and your person is the most important thing I would have acted like you! Brave, I will follow your recovery for Patreon
Im sorry you got LM , I live in the Amazon region of Brazil. Both me and my wife got cutaneous Leishmaniasis it in 2007. It's very good the dermatologist did a biopsy and you got a positive diagnosis. Glucantime is the standard treatment here. The course of treatment is 20 to 30 doses applied intravenously. Im happy to say that it is curable. The downside is the medication is rough on the body. I would recommend anyone infected with the Brazilian variant get specialized treatment here in Manaus at the center for tropical diseases. I'm shocked at the lackadaisical attitude your physician took. It is serious and should be treated aggressively. The NIH has a good tropical medicine department but Brazil has much better treatment due to the sheer volume of patients and national studies. I hope your treatment is 100% effective and wishing you a full recovery. For anyone else who may be in your situation know that there is light at the end of the tunnel.
Thanks for sharing, vizinho🙏!!! Here in Brazil we do have a lot of endemic regions and we must protect ourselves and our pets!! Fortunately there is treatment for all. For pets I know we do have even developed a vaccine, but I don't know if there is any option for humans...
This video is going to save lives. Medical gaslighting has gotten out of control and it’s time we normalize showing others what it looks like and how it effects us. I’m in admiration of your courage and resilience, despite many setbacks. Keep fighting the good fight!
Yes!! I always do tons of research before I go to my doctors and I write down what they need to know. I’ve had to really fight to get some medical issues treated. Doctors aren’t Gods and we need to speak up and ask questions.
Sadly its less gaslighting and sometimes just too many doctors think they either know everything or they literally just know nothing. Obviously there are doctors who do in fact gaslight people. But sadly in this guys situation it was a combination of people believing they know too much and just it being hard to find someone that knows anything at all. The reality is that because we [Rich Western countries] don't normally deal with these sort of things- there's little to no research into any of these "common" conditions and the unfortunate reality is that it won't change until it starts to hit the richer countries more often. The oath of dr's being dedicated to doing no harm and doing the most possible within our capitalist system does not breed true research and exploration into the betterment of human wellbeing. Doctors used to go to school and study illness with a vin and vigor that it could be considered obsessive just to know more about the world and the human body. But now a dr can't even do such research for the betterment of humans as a whole unless its proven to be able to make money long term. The problem we have within our health care systems, and science as a whole is a loss of compassion, a loss of true desire to push the boundaries and above all- greed for wealth and power. The likes of which are really only temporary for those who gain it.
I found this video and about a minute in, I knew your story because it is also mine. I was bit by a sandfly (on my face) while to the jungles of Belize in December 2021. I was finally diagnosed with leishmaniasis after several months and several misdiagnoses. I was treated in Vancouver with miltefosine which was a brutal 28 days of chemo that did not work. That was followed up by 14 days of infusions of amphotericin B which also didn’t work. This making me the first Canadian patient who failed to respond to the two top treatments. My infections disease doctor tried other treatments which were equally unsuccessful. I pushed very hard to be treated with pentavalent antimonials which is the most common treatment in central and South America where this illness is common. I was eventually given interlesional injections rather than intermusculaire which causes more side effects. This worked and after 9 months of treatments I finally felt I was on the road to recovery. Now I am preaching to every traveler I know to always wear bug spray. A little precaution goes a long way.
Oh my god, what an insane story!!!! Thank you so much for sharing. Let's connect directly. I would love to hear more. Send me a DM on IG if you're interested.
Thank you both for sharing your stories. I'm so sorry you have had to face this incredibly difficult and painful journey. As another person has commented, you both have likely saved lives, as well as saved people from lots of misery, pain, heartache and fear. May God heal you both completely, and may He spread this information to doctors and sufferers around the world.
The first doctor was so in over his head. Makes me mad to hear that a person with that many years of education cant see that and point you in the right direction instead. Good luck to you man and stay strong!!
I have a condition that results in severe sweating from some of my sweat glands. I had read about it throughout severals years and finally went to see my doctor about it. I knew about what sort of treatment was viable either through medication or surgery and what NOT to do. He was very arrogant and completely dismissed everything I said I had read about the condition and told me he was the doctor and not me. He didnt know anything about it and straight up did a quick search on their database right infront of me. He went right ahead and proposed I would need surgery - a surgery that experience said would worsen my condition over years. Im a big guy and in my 30s. I dont get very emotional often or at least show it infront of others. I broke down in tears when I visited a dermatologist that knew everything about my condition and proposed medication and not surgery. She literally sent a very stern message do my doctor and scolded him.
Btw, my wife is a Dr and just told me all the treatment you needed in 5min, and she was sad to see you suffer like that. She said every medical student in Brazil knows the treatment for this disease. She said you are young and will get out of this. Get better my friend.
why didn't they have him put something like neosporin on these infected lesions? couldn't it at least stop it from getting staph in the open wound and rotting?
I am a research scientist from Brazil and I am a witness to the efforts of Brazilian scientists researching this disease. I was part of a research group that runs research on Leishmania and can tell you, although the Brazilian government does fund research like that it is not enough to progress forward in the speed needed to help people. Your video just comes to show how important it is to invest in neglected diseases. It is endemic to "poor countries" so nobody cares but, as you can see, disease travels much easier now. I hope your video creates awareness about Leishmaniose and if you need contact with specialists in Brazil (which are most likely much more familiar with the disease) I am available to help with that.
South Africa has the cure for 30 years,the med used has been given out for free and still is it kills many different parasites,this poor guy got the run around ,as a matter of fact its on the NIHs meds list to have for Parasites!!😢
That sum's most points! TKS! The one thing you didn't point out was about the careless of us healthcare system they are trying to copy and apply here in Brazil... Bom, como toda doença provocada por protozoários, são de difícil tratamento, e ainda mais difíceis de encontrar medicamentos eficientes.
I was just going to suggest that that I would have checked local doctors treatment I'm sure they experience it more often down there The treatments might not be as advanced but they know what it is Good story and so far the ending looks good Good luck guy
Mama by your side makes it less scary. Doesn't matter how old we become, we always need our mothers to comfort us through the difficult times. I loved that she was with you.
One of the sad facts I learned on my son’s journey through brain cancer and severe seizure disorder is that most doctors suck, aren’t good at what they do and basically burn through their days doing as little as possible to pay their bills, just like much of our society. Finding a competent professional who actually cares is a huge battle, then holding them to the highest standard of care possible. I’ve found that if I bypass local docs, and go straight to the best hospitals in the state, the country with the exact specialty in your disorder will save you a lot of time and may even save your life. I’m in North Carolina and I’ll drive hours to Duke and Wake Forrest, which are the two best teaching hospitals in our state. I’m glad you fought for yourself and found the right docs. It’s frightening to think what may have happened had you not gone to battle for yourself. Hugs to you. ❤
Same! I have a rare disease and learned quickly that local Drs / hospital didn’t know anything about what was wrong with me. Went to the best teaching hospital in my state who quickly referred me to the only Dr in the world that treated my disease. Local Drs said my condition was terminal and I had maybe 6mo. That was 15 years ago and I’m considered cured now. You are your only best advocate! Sucks that people like us are called Dr. shoppers and chasing unicorns. Friends and family thought I was exaggerating my condition. When I was ultimately diagnosed and had to be treated out of state with a specialized open heart and lung surgery the naysayers ate some big slices of humble pie I was told. They are no longer in my life bc I just don’t need that negativity.
The problem is that everyone expects their doctors to be Dr. House. - Super-genius doctors like him don't exist. Hell, his entire department (Department of Diagnostic Medicine) doesn't exist. It's fantasy created for the TV show. Doctors are trained on what's common in their area. If you're in Cleveland Ohio, doctors aren't going to know a whole lot about Amazonian parasites. If you're in the Amazon, their doctors aren't going to be too knowledgeable about Brown Recluse spider bites. This isn't a fault of the doctors, they cannot learn everything there is to know about medicine, that's literally impossible. So they have to specialize in what's common in their area. General practitioners know enough to identify an issue, then refer that person to a specialist. His doctor didn't do that, or referred him to the wrong specialist. It sounds like he was talking to a dermatologist when he should have been talking to a doctor that specializes in parasites. By the way, MRSA and necrotizing fasciitis are tens of thousands, if not millions of times more common than leishmaniasis. The doctor was not wrong in suspecting that it was the former, as 999,999 times, that's precisely what it is.
I , too go to a teaching hospital and my treatments have been great. I need to share what been happening to our hospitals, and as a consequence ,our doctors. Our medical has been taken over by business investors and corporations who know nothing about medicine. They only care about profits. I have known doctors who retired early because they couldn't stand what treating patients had become. 15 minutes per patient 30 minutes on the computer. The more patients they see the greater the profits. Their bosses are not doctors but business men. The doctor is chastitized if he or she spends more than the allotted time. It's a no win situation for patients or doctors. There are many doctors who care but in America you're screwed if you're poor and now if you have a medical insurance. Deregulation of business has allowed this to happen. When banks own health care insurance companies you and many have experienced the results of it. Another nasty result is more students who care about helping people are choosing not to become doctors . Becoming a veterinarian allows the time to care for the patient 😅.
For those of you who travel a lot. My family usually visits Africa and we often have gone into some isolated parts of various countries. What we have learned is that if we develop any diseases within a year of traveling from any African country we need to consult with African physicians that work in those areas. Usually the same applies for other countries as well. This principle can save you a lot of heartache especially if you travel to a lot of isolated parts of the world. I remember one traveler who developed African sleepiness disease which was missed by many physicians however within one consultation a Kenyan doctor diagnosed him and even gave him a treatment plan.
Yea you can’t catch a disease in Mongolia and then come back to the United States and expect good treatment. Even with some of the best doctors they’re not well versed in diseases they don’t commonly see.
African sleepiness disease isn't the only disease that can kill you in Africa. Ebola virus disease and Marburg virus disease are found in sub Saharan Africa Ebola and Marburg viruses are rare but deadly viruses known as viral hemorrhagic fevers which are capable of causing high fever shock multiple organ failure and severe uncontrollable internal and external bleeding since viral hemorrhagic fevers damage blood vessels and interfere with bloods ability to clot. Ebola has an incubation period of 2 to 21 days with an average incubation period of 8 to 10 days. Marburg virus has an incubation period of 3 to 21 days with an average incubation period of 5 to 10 days. One thing that's important to note with Ebola and Marburg virus is that once a person is infected with Ebola or Marburg they are only contagious once symptoms appear people who are infected with Ebola or Marburg and are still within the incubation period and not showing any symptoms are not contagious and cannot transmit Ebola or Marburg to anyone. Viral hemorrhagic fevers like Ebola and Marburg are only contagious once symptoms appear and are not contagious during the incubation period. Ebola outbreaks in the past had fatality rates between 25% and 90%, in patients who seek immediate medical attention for Ebola the fatality rate is an average of 50%, but Ebola can still have a fatality rate of up to 90% depending on which strain of Ebola is involved since there are different strains of Ebola. Historically Marburg virus had a fatality rate of around 70%, but it's worth noting that case fatality rates of between 23% and 100% have been reported for Marburg virus.
Just 4min into the video, I showed my Amazon Brazilian husband the picture of your calf and his immediate reaction was LM. For the price of the drug they first offered you could have traveled to Brazil and be treated by people who know this disease. So sorry you suffered so much especially with the lack of correct medical attention at first. Wish you the best recovery !
@@ChrisPatrick-q6k probably, medical treatment in US is REALLY expensive. That's why people from the US often travel to Mexico or some other country to get some more specialized (more expensive) treatment.
Because they really don’t know, he just said why…. It is not common HERE, if he stayed where it happened I’m certain he could’ve gotten sooner treatment. You can’t blame the drs here when they are trained for what happens HERE more commonly and not the other side of the world, where the doctors there are trained for what happens there. Yes there is the one specialist who knows about it here, so one ☝️ specialist out of the thousand of drs. Like he’s doing he has to dig for that professional here.
@@OctoBear88 lol. I love that even after people watch videos like this they STILL think doctors are some supreme beings. 99% of they are worthless hacks unless you have simple shit like a broken arm. You'll find out one day. Good luck.
The psychological aspect. .. it’s a beast in itself. As a cancer survivor I had become a hypochondriac and recluse. Despite being so positive and so strong fighting the cancer, it was afterwards that kicked my $&ss. For awhile bump, etc. put me into a spin of “oh my gosh the cancer is back” It was insane. Thankfully, I am 10 years no 12 years cancer free and as each year passes that fear resides. Now my obstacle is being a germaphobe. An obsessive compulsive germaphobia . All I can say is stay strong Brother. Keep the faith and stay strong.
This! I had thyroid cancer and now my once healthy body is a mess. I've had dental issues from the radiation and many abscesses. Next, I've had H. pylori, C Diff (nightmare), Covid twice which left me with looong Covid, a Brown Recluse/fiddleback bite (for which I'm currently being treated) and a flu of unknown strain. This has all occured since the beginning of 2020... I'm EXHAUSTED and don't know how much more I can stand. I am afraid to get sick again.
I survived necrotizing fasciitis. It’s maddening to advocate for yourself, and yet so necessary. A Drs life doesn’t change when your health fails. Only yours fails. You’ve been an awesome I’m so happy for you
Was Ivermectin ever considered? Many who had terrible symptoms from the Covid shot, had to advocate for themselves, also. I learned that the majority of doctors will not delve into the difficult cases. Frontline Doctors (FLCCC) are very conscientious. Dr.Paul Marik & others, think outside the box. Glad you're doing better, & thnx so much for posting this!!!
Two years ago this week I contracted necrotizing fasciitis also…in my eye! Also, in addition to the staph, I had other lethal germs and the fungus aspergillosis. I had two debridement surgeries. I am blind in the left eye. I was 79 at the time, immunocompromized, have Ms, RA, PMR, Giant Cell Arteritis and several other diseases. I was not expected to survive but I did anyway! The puzzle to me and the large team of doctors was how did I get it? I am obviously disabled, don’t drive, live alone, have good hygiene (retired Nurse Practitioner) and live in a senior apartment. The mystery continues.😊
Attention attention how did oxide food grade hydrogen peroxide kills parasites enemies in your body take a couple of drops in a glass of distilled water several times a day and each progressive day you Increase the drops of hydrogen proxide in the glass of wate. Followed up with a 10 day fast of no food in it will starve out and kill the parasite!! The evil pharmaceutical industry and the medical industry want everybody dead and they will load you into believing that it is more complicated than the prescription I gave you above...
As a brazilian doctor, thats a disease we study in medical graduation, so every brazilian doctor know about this disease and the treatment is for free here. Here we have one of the best infectology medicine in the world!! Big places to treat a lot of weird diseases. So for people that got infected in Brazil, its good to seek those centers like Emilio Ribas or Instituto de medicina tropical
Attention attention how did oxide food grade hydrogen peroxide kills parasites enemies in your body take a couple of drops in a glass of distilled water several times a day and each progressive day you Increase the drops of hydrogen proxide in the glass of wate. Followed up with a 10 day fast of no food in it will starve out and kill the parasite!! The evil pharmaceutical industry and the medical industry want everybody dead and they will load you into believing that it is more complicated than the prescription I gave you above...
it’s so cool ur mom went with you. nothing like having ur mom there to take care of you when you’re going thru something like this. gotta love your momma!
Doctors are a great example of how pride can not only hurt you but also others. I’m glad you found help. And it is great to remind people of this: you are your best advocate.
I have a friend who got LM in Colombia in jungle and returning to U.S. for wrong treatments and thanks God he listened to a friend who told him to go immediately to Brazil where they know this very well because of all the cases there and he went through treatment there. Was hard on his body but he healed great and is in good health now. Glad to hear NIH has a good program, but if it happened to me, id go straight to Brazil, they are truly experts there if this condition. Blessings and so happy you made it through. 💓
Thank you for doing what you do❤ Do you happen to be close to Boston? I thought I had LM after staying in the Peruvian rainforest; and experiencing drastic changes over a relatively short period of time. I was later misdiagnosed w/ lupus; further gen. testing finally let all my square pegs fit into their square holes with diffuse scleroderma. Trying to get a proper diagnosis STILL has proved nil; as my faith in the medical community as a whole has literally been shattered. (At first thinking I had a paras¡te here in the states; having no primary I went to Mass General knowing they had a specialty in tropical and neglected diseases, was promptly put on a 5 day hold without being told I could see a lawyer, in which I would have been let out the next day...) I'm 7 years on and I'm going downhill as I have stopped seeking help ( After a series of personal tradgedies)❤ I'd love an advocate as I'm so tired, sick and in need of multiple surgeries and I'm terrified of it all😮 God bless.
I was a pharmacist. The cures for tropical diseases are largely neglected--the number one reason is they are not profitable enough. Your statement that you had to fight for your care is very true. Patients must advocate for their care and treatment. Research all you can and then demand care. I'm very happy you are well.
Sincerely, I would look for a dermatologist in Brazil. I guess they could have answers that doctors in America won’t have since this is not common here in America. I am a Brazilian, I believe the attention you get from your doc is way better in Brazil and there is a bigger chance you’ll get the answer you need there… there are some kinds of diseases that are more common in hot weather / tropical countries. I wish you all the best! Have faith you will be cured from this! Prayers to you.
Yes, that would have been my number one move too. Definitely making sure to go to the top docs in Brazil or Ecuador who specialize in their regional and common issues.
Great suggestion. My question, are the people living in the amazon immune? Did you reach out to see if the people you were with in the jungle got bit ?
I'm from Brazil and I'm currently on nursing school, and it's a very common disease around here, specifically in the northern regions. I recommend you seek help in the hospitals of those regions, you'll find the help you need in no time + most of the treatment is free.
@@iyahbinghiiyatah2456I would've recommended a center for tropical diseases on the Amazon, but you can also have a shaman after being to the doctor. I also think the shaman would say the same thing hahaha
Here in Brazil the medicine is given by the government, for free. I'm sorry about what happened with you, I wish you a good recovery. There's cure, but I hope you don't feel any pain anymore. Best recovery!
I cried when you talked about how frustrating and demoralizing it was to not have answers and to have been dismissed and mislead by your doctors. This happens so often for those of us with chronic illnesses or weird illnesses, and having lived it for most of my life now, my heart goes out to you. I'm so glad that it seems like your experience with this will be relatively short-lived, even though it probably feels like a lengthy ordeal. Wishing you all the best!
Gtfo of the American health system, it's for profit just like the prisons. Arrange a vacation and go to any civilized country in the world with free healthcare, not only will it be cheaper but your problem will either be solved or the solution found, essentially instantly.
YES I have autism and hyoermobility (pretty sure its HEDS because none of the doctors know why I'm getting worse and worse and all the symotoms match) and POTS too, and Ive been fighting for over a yesr to get the right treatment for my hyoermobikity (first doctor told me to go to the GYM, wich only made it worse),its so tiring, espeacially when youre underage and all doctor think your problems will magically solve themselfs when u stoo growing. I can copy the comment I alredy posted about my whole journey, but anyways, it feels really validating to know I'm not the only one who goes through this and that I shouldnt stop fighting for myself
@@maxfischerbocca1221 Hi, fellow zebra! I don't have EDS (beighton score too low) but hypermobility and since that is not considered an illness, well... my doctors don't care or worse, they think I'm a hypochondriac. I swear, if I could change one thing about this world, it would be adequate health care. I emphasize with your pain and frustration and I hope seeing that you are not alone in this helps you a little like it does for me. Hang in there 🫂
My dad has heart, lung 🫁 disease, sleep apnea, restlessness leg syndrome, and many more things. He was suffering from all of that stuff since he joined the military. So from 1983-2004 he was fighting for answers. He got sick with heart issues around 2001, while still working as a C.O. That waiting and pushing for answers and treatments in the medical field is beyond nerve racking I can only imagine for him dealing with it.
This always angers me to hear others experiences with being completely blown off by doctors. My oldest child was five days from turning 17 two years ago when we nearly ended up having to plan for the worst. Initially that morning began with severe digestive distress, this isn’t new unfortunately as my kiddo has a genetic condition called gasteroparesis which means their stomach is paralyzed and digestion isn’t happening correctly and food is moved from the stomach to the rest of the digestive system extremely slowly and there are many complications. Pain is part of their daily life so we began the normal treatment thinking this was initially the issue. A few hrs go by and we realize that this isn’t the normal symptoms and I rush my child to the nearest emergency room equipped to handle my kiddos condition (this is the hospital we’ve gone to many times as their pcp is there and works with that hospital as well and they have all records on file usually making things more smooth as digestive condition is only part of the total of three genetic conditions that effects my kiddos body). Unfortunately, there was a physical on that day that we had never seen and according to later information we were given after the fact was a very new physician to that hospital. He was dismissive, refused to check ANYTHING to include hr/ blood pressure or even O2 sats. Even after I begged them to at least take any of those over two dozens times in the four hrs they kept us there. At one point my kiddo is shaking uncontrollably, has become extremely pale (normally olive tone unlike male and was more pale than I am) I could tell at that point they had a high fever but was still told “ just give your kid Tylenol and take them home they will be fine!” Very condescending! The ONLY thing they did test for was infection and pregnancy and we were told no infection present, bloodwork was said to be “normal” and while they did actually do a CT scan at this point supposedly looking for kidney stones they actually did a contrast ct scan which was both contraindicated for pediatric patients and even young adults due to a very high risk of allergic reaction to a component in the contrast as well as being contraindicated in use when looking for stones because it washes them out, creating a bright white spot which tells them absolutely nothing about what that stone looks like/ how big it actually is or anything else helpful. They told me again to just take them home they were fine and they “couldn’t be in that much pain it was just a kidney stone”. Thankfully! I didn’t listen to them fully. I did drive the 45 min home and ran inside to get our thermometer and after it came up 105F I called the children’s hospital which is nearly 4 hours away at that point due to the temps outside being 20F / there was ice on the ground and it was snowing! The nurse at children’s was amazing! Stayed on the speakerphone with me the entirety of the drive with an ambulance on standby to head towards us if anything began to happen that I was unable to handle or my child began to crash completely. Thankfully after being told to roll down all four windows (20F outside) and blast the AC the entirety of the drive in an attempt to get my kiddos temp down we finally arrived at the hospital. They were waiting at the front door with a gurney and after taking temp which actually went up to 105.7F they bypassed ER altogether there and we rushed straight into the PICU. That night was terrifying. Heart rate at the moment they began hooking my kid up to all the machines and placing oxygen, retaking blood work, etc etc was 288 bpm which was terrifying because their concerns between the heart rate and fever alone became stroke and brain damage if they were not able to get the temp and hr down quickly. I’ve never in my life seen a blood draw where when they took the blood it looked BLACK due to the amount of red cell death that was occurring. They had pulled all records from the initial hospital prior to our arrival and told us that the idiot doctor at the first hospital was wrong in everything. Not only did my child in fact have a major infection, not just one kidney stone was present instead there were five total with the one causing a blockage which had begun the infection, the blood work was NOT “normal” even at the initial hospital but they read it incorrectly or didn’t care, they also had refused to take basic vitals which would have absolutely shown the kid was sick! Unfortunately, by the time we got to the children’s hospital my child was fighting a severe case of sepsis and they weren’t sure my child would make it through that first night. Even leukocyte counts were up to 16,900 something I can’t remember after the 16,900 part but it was because they then told me 17k is brain death/organ failure and death. It was terrifying. Thankfully my child is a fighter. After five days they finally realized the stone was not going to pass, they were trying to see if it would as they also had to continually fight the sepsis which they really did not want to risk surgery or another dose of radiation with another ct because of the stupidity of the initial doctor doing the contrast ct which my child on top of everything else had a severe allergic reaction to. So they were treating the sepsis with very strong antibiotics that were given over twenty four hours very slowly and after those five days we all agreed that the sepsis was going to continue if we didn’t address the stone and the risks to doing another scan (obviously no contrast) and the risks of surgery were now outweighed by the risks of leaving the main kidney stone that was the immediate threat and making it so the medications were not able to fully rid the infection. So that night kiddo had emergency surgery to fully remove the one stone which ended up being a 3mm stone that was so spiky that along with the inflammation created complications to get that stone unstuck and fully removed. They also were able to better see the size of the other four stones and addressed those with medicine that dissolved them rather than making the kid pass them or attempting to remove them when the one took longer to remove and there were issues with trying to get the kids pain under control in post op thankfully due to the way things are in post op coming out of general my kiddo has no memory of it but it got incredibly stressful and scary at that point as well then suddenly kid became bradycardic where the hr started dropping too low, oxygen levels started lowering again and that night we were extremely concerned. By the next day though this kid was suddenly bounced back and ready to go home and we got to go home later that afternoon where we rush out together a 17th birthday party❤. It was terrifying and we filed complaints against the initial physical at that first hospital. We were told by the teams at children’s they had we taken the advice of the doctor my kid would have died before morning the first night!!! I am still furious because the level of absolute disregard for my child and refusal to even do the basics of his job nearly cost my child their life. I’m glad I stuck with my instincts! I tell everyone if you know that things aren’t right, do not stop until you get answers!
I finally found a doctor who listens to me and will run any test I ask. I’ve cried telling her how much I appreciate her. Blessings to you, and a healthy recovery.
Welcome to the world of the professional patient… there is nothing harder than advocating for yourself and being so frustrated no answers and docs that do nothing. I’m SO glad you put this out there. You are not alone! Sending healing hugs your way!
It’s insane that patients have to be their own advocate. It’s almost guaranteed that at some point the doctor will ask you if you’re imagining your symptoms. They generally do this when they encounter cases they can’t figure out / don’t want to figure out.
I went 10 years trying to get pregnant. When I saw my third reproductive endocrinologist, I told her at my second visit what I thought was wrong. She said, no, I'm wrong. After a 3rd unnecessary operation, she said sometime women can't get pregnant and we don't know why. I had to force her to give me one little blood draw form for what I thought I had from the beginning. I did have it. My baby was born 2 months later, and I had another one in two years. I shouldn't have been blown off, but I always am and now my children are going through the same thing. U.S. Doctors don't know a thing about CAH.
My physician husband and I (a pharmacist) really enjoyed your story. We were very disappointed, however, and the seemingly unengaged infectious disease doctor. He really should have admitted that he didn’t know what next steps to take. Huge kudos to you for being your own advocate and getting the help you desperately needed! Many patients are intimidated by their physicians and never question them or seek second opinions. You were clearly not and that is why you got the end result you did. We wish you nothing but the best in the future!
As a Wound care nurse, I'm quite surprised they didn't refer you to one, and why on earth would they think it wouldn't matter and to just leave it open..smh, I'm sorry you've experienced the negative side of healthcare, it's happening too often. Thanks for sharing your experience.
I HAD MRSA ..SO WHAT THEY MEANT IS DONT TRY TO CLOSE THE WOUND WITH STAPLES OR OTHER MEANS..LEAVE IT OPEN IS CORRECT..PLACE THE DISINFECTANT ON IT AND PLACE A COVER ON IT ..THATS WHAT THEY MEANT..
@@Sarah-ty5ev NOT HIMSELF OBVIOUSLY, SOMEONE DOING IT FOR HIM, STITCHES, STAPLES, LONG BUTTERFLY STITCHES OR EVEN A BANDADE WRAPPED TIGHT, WHEN I HAD MRSA, ONE OF THE HOLES IN THE BACK OF MY THIGH WAS QUARTER SIZE, LADY SAID LEAVE IT OPEN..I KNEW EXACTLY WHAT SHE MEANT, I WORK IN THE MEDICAL FIELD SO I ALREADY KNEW NOT TO TRY TO CLOSE THE WOUND UP, OPEN TO LET THE CRAP DRAIN ON ITS OWN WITH THE ANTIBIOTIC I WAS GIVEN, IT WORKED AND THE HOLE CLOSED ON ITS OWN
100% you nailed it - NEVER accept “expert” advice when your body is telling you something different. Thanks for your leadership on this and for sharing what you’ve learned! Thanks for your awesome joie de vivre.
Our medical system is so broken. Hundreds of thousands of dollars spent over here after I contracted a disease doing volunteer work in Central America. I went from being super healthy to almost dying. Traveled the world to find consult with various doctors. Praying it gets better. Just when I got healthy I got Lyme disease last year hiking the Appalachian trail. 💔 this temple of ours is so fragile and yes we have to be our own advocates.
Oh wow that's awful. I learned Lyme disease was purposely put into ticks in a lab (in the north east) for germ warfare. A huge number were released and now we have a massive Lyme disease issue growing in this country.
Yes, we have to be are own advocates. However, what happens when you are so ill, out of money, elderly & so beaten down from trying to get help you can't advocate for yourself. Our HC system is broken because profits come before patients. No one should have to go through this to get help. Someone here responded that if your over 60 they don't care. Sadly I agree.
You're a bigboy, but there's nothing better than a supportive mom by your side during those difficult times! Kudos to your mom. Happy mother's day to her!
As a nurse this was fascinating and I thank you so much for sharing your story. I'm so sorry that you faced so much resistance to getting appropriate care. Usually in my experience Infectious Disease doctors are very proactive about treating rare diseases and connecting patients to appropriate resources, because frankly it's very interesting for to them to encounter such cases. I'm angry on your behalf that your care was so mismanaged and I commend you on advocating to get the care you needed. Best wishes for healing!
I’m a nurse who has practiced for 37 years and I am appalled at how your initial care was managed. Sadly, it’s incredibly common for patients to endure the gaslighting, blasé attitude of my colleagues. I don’t understand why they do it. Thank you for being vocal, sharing your story and becoming an advocate. Sending you love and prayers.
Dude. As a physician I’m glad the NIH exists. Your video tells me everything I hate: telemedicine, PAs examining new patients, “wait patiently philosophy”, etc. I see the pain rattling in your teeth. That’s insane. I’m glad you got this beginning this treatment. AmpB? Is intense medicine. I’m sorry this happened to you. Great story telling. I wish you all the best.
You're right about PA's. They mean well but they DO NOT KNOW WHAT MD'S KNOW! You cannot substitute a few months of education for the many intensive years that MD's have to go thru.
@@iamgabriel5823 Hmm. It is true education matters but there are plenty of MDs who don't listen to their patients. Medicine is more nuanced. Also, my background is med tech so I knew of this disease but a quick google would have pointed in same direction due to him traveling to place where its prevalent. I am applying for PA school so lol maybe I'm a little biased.
@@Rinsuki I think the biggest takeaway is that here in the US, leishmaniasis is a zebra and that even dermatology and infectious disease doctors (let alone advanced practice practitioners) get used to seeing all sorts of lumps, bumps, and wounds. A quick google of his wounds (in all stages) can pull up anything even knowing there's a history of travel.
Dear One ! The first thing I learned while living in Mexico when I got a serious parasite and for other health problems was this: First, go to the local indigenous healers , as they know the plant remedies for illnesses in their area. They have knowledge from literally thousands of years passed down from their ancestors of master healers. Many or most of These plants and other methods of healing are unknown to western medicine. God bless you & the doctors on your healing journey. 🙏🏽😇
YES!!! The villagers know how to heal this. Their tradition medication, something in their blood that fights against that parasite. That village would have been wiped out if they didn’t know how to kill it. Contact them, go back and see them, if you can.
Somehow yt recommended me this.. Oh my gosh.. I’m so sorry for all your pain.. it’s a very good thing that you contacted NIH for this.. just unbelievable.. I really wish you recover asap!! What a scary situation ever.. oh my.. God bless you and your loved ones!! Thanks for sharing this during your terrible pain.. stay strong!!! ❤❤❤
Amazing journey. I work in research on Leishmaniasis. After seeing the first picture, I shouted out, 'Leishmaniasis!' And I was really angry when I saw that the doctors gave you miltefosine, especially guessing that you had L. braziliensis. I'm glad that you received great attention afterward. Don't worry about mucocutaneous leishmaniasis, but know that it is a possibility, and with the correct treatment, you won't have any problems. Sadly Leishmaniasis is considered a neglected disease, so most of doctors have no idea about it. We try to teach about it, but it’s difficult to make understand the students about the importance of knowing this kind of diseases.
It's great that you work in research. My dream job is research. I guessed leshmaniases because I've taken too many parasitology courses. Had a great professor that lived the weird and this was one of the diseases he covered.
@@chesneymigl4538I'm so glad to see that there are people like you interested in research in parasitology. I hope you can pursue your dream in research. Go for it!
I had a horrible skin problem and doctors told me I was just picking or crazy (I have bipolar disorder so it’s hard for me to find doctors that treat me for physical things without them being blinded by my mental health issues). I eventually got a reprieve after 10 years of having secondary staph infections and being afraid to touch or hug my kids bc I was afraid of giving them something. My reprieve came from soaking in a chlorinated pool and spraying my skin everywhere with peroxide and bleach (I Still see bumps coming up and I never got an answer as to what the hell I have), but I have stopped waiting for an answer.
@@shieldmaiden1318 OMG!!! That’s horrible! Did the doctors try to see if you have some micosis infection? Fungal sometimes are not considered, and are very difficult to diagnose. I hope you can find a answer to your dilema.
Hi Gareth, I had Kala Azar as a kid - essentially visceral Leishmaniasis . Got it in Spain, where its otherwise completely unknown and was not diagnosed correctly. Spent the next 9 months in a hospital being treated for leukemia with no improvement, obviously. Eventually a friend of my grandad, a one-armed former Wehrmacht doctor who had been stationed in Albania during WW2, came to see me. He instantly recognised Kala Azar, prescribed amphotericin and within a month I was right as rain.
In the medical field you can't undervalue experience. I hate it when doctors fresh out of med school, young ones, talk to you like your stupid. I know my case better than you do. At least consult with your attending please. This treatment was tried before, it wasn't effective.
Heartbroken for the pain and fear you have had to face. It’s horrific how dismissive doctors can be. Also, your mom is a rockstar. What a precious lady. I’m so glad you had her support through those treatments!
That Telehealth with the doctor just shrugging you off literally made me see red, have had this same experience with doctors before and while not horrifying infectious disease levels, I am scared to finally have a doctor one day pay attention and tell me “oh you were right, there was something wrong all this time and it would have been better to treat it earlier”. So many doctors are egotistical and not listening to their patients and it’s messed up. Glad you’re finally on the right treatment path, my heart broke listening to the fear in your voice 💔❤️🩹
Good public service announcement, #1 thing for the patient is to be your own advocate and don’t stop until you get what you want. Unfortunately the #1 goal of the doctor is to send you home
As a registered nurse, I cannot agree with you more. I really wish healthcare wasn't so fragmented and disconnected to human emotion and actual care. There are some good people though. It's the bad experiences that suck.
Too many of them are all into it for the money. They became doctors just for the great lifestyle. I know a few that are constantly flying to Paris or Bora Bora like places. They are horrible!! We need a system to rate these doctors.
@brandoncarpenter9681 true. Back when I first had Lyme Disease it took me finding a specialist who thought to give me a Lyme test which revealed it, while my local doctor kept telling me I'm fine. Now I know to see multiple doctors if needed to find a right one. Even to this day the medical industry doesn't seem to take the condition of long term Lyme seriously. Relating to this video- it seems like there's some close mindedness with a lot of 'infectious disease' doctors when it comes to stuff outside the norm.
We are all battling this uncaring care situation, Alzheimer’s Cancer, simple diseases…we are all fighting for some decent care and affordable meds, it’s awful for so many.
Its crazy how you were doing so many other things to make content for us and hiding the pain and what you were going through and we never knew about it!
My brother contracted Leishmaniasis while at a yoga retreat in Costa Rica a few years ago. The final treatment was a series of infusions of a strong medication that required monitoring of his heart. I remember it taking quite a few months to determine what he had contracted and come up with a treatment plan in Canada. He is doing well and had a full recovery. I wish the same for you.
It's good to know if you go back to the country where you got it you can be diagnosed immediately and the treatment will end up being way cheaper or for free, in case of Brazil, I don't know how the health system is in Canada. Good that you all found a solution, even if it was a bit late.
This type of disease is very well known in Brazil. here you would have been more easily diagnosed. But anyway, I wish you a good luck and you recover completely and also that these bad times don't make you forget the incredible moments you certainly experienced on your travels, a hug from Brazil
É oq eu tô pensando, se o cara pega leishmaniose AQUI, pq n vem tratar AQUIII??? Cara, é puro preconceito!!!! Se tivesse tratado aqui teria terminado muito antes. Gringo é mt sem noção.
@@rodriggrrr9788it turns out people don't like leaving thier home and travelling between continents for medical care when they don't even know if it will be better
This happened to my uncle. He went to the Amazon while on his yearly trip to Bolivia and came back with this. Oddly enough, we live in northern San Diego county and none of the doctors could figure out what it was and they kept treating it incorrectly so after a few weeks to months, he ended up flying back to Bolivia, where they figured out what it was, and were able to treat him there.
I keep seeing comments where people suggest you get treated in the country you got sick in. Makes perfect sense and is now something I will always keep in mind.
@@AccidentallyOnPurposeI'm Brazilian and I came to the comments to say that he should've went back, but I'm happy so many people here put it in better words than I would've been capable myself.
I teach parasitology, and one thing we always emphasize to students is the importance of taking any symptoms seriously when a patient has a travel history to an endemic region, even if it was years ago. Many parasitic diseases don't show symptoms for years, making it crucial to consider this possibility. I'm sorry you are going through such a difficult time with this awful disease. I'm glad you were able to receive care and treatment from the NIH. I understand that sometimes doctors may not be able to diagnose diseases like LM, as they may have never encountered other cases before, but I wish they had taken your travel history more seriously. Thank you for sharing your story. Being aware of the diseases present at your travel destination is essential and people should be more careful and aware of the possible risks. One of the main ways to avoid getting LM, as you mentioned is to avoid areas and/or times that sandflies are very active. I hope you get better soon and make a full recovery. I hope to see you post videos with good news soon. 🙏🏻🙏🏻🙏🏻
This situation sounds far more like inexperienced doctors than doctors who won’t listen. That one doctor had only ever treated one other patient with a less severe case and LM as a whole is understudied. Don’t jump to conclusions but also don’t be afraid to move on to other options and don’t be afraid to speak up for yourself. Doctors can’t read minds, and both highly skilled and bad doctors exist everywhere.
Well I question the validity of the video appointment to begin with. The whole point is to track the progress of the disease and wound and if the doctor isn’t willing to view the wound…what is the point of the appointment other than bill the patient while the doctor is on vacation? I mean he clearly said to the doctor that he was in pain and his wounds were worse and the doctor said “…be patient.” Be patient and wait to die as I take $50,000 medication that apparently is not helping me and oh, is making me sterile?!? Oh, ok. You’re right. Good idea doctor “I’ve treated one whole person with this disease before.” Hmmm. On second thought, maybe I’ll make a phone call. (That might have been a bit harsh but it hit a nerve. No offense intended.)
@@Codasmom1776 exactly! It is unacceptable for a doctor to make an appointment and refuse to do an exam. Refusing to listen to patients and also dismissing symptoms or concerns of the patient at all. Its just charging them for nothing.
Full disclosure, I had never heard of you before today. This video just popped up on my YT page and I thought I'd check it out bc I myself went through a similarly horrible experience. I've never been outside the US but I took a job in a chicken processing plant in early 2018. I absolutely loved my job until Nov 2019 when I fractured my wrist. At first it was no big deal, I went to the ortho got it set & waited for the all clear to return to work. The break healed easily enough however when they released me to return to work my hand was pretty swollen and red. I was told it was due to the brace that had been on nothing to worry about it would clear up in a few days. That however was not the case. As the weeks passed the skin started to open up turned purple then black. No one could tell me what was wrong. Some drs said staph (wrong) some said klebsiella (wrong) some said auto immune (wrong) some said gangrene (also wrong). I was eventually sent to the best hospital in our state where I spent a week with a team of doctors from every specialist you can imagine trying to figure out exactly what the infection was and how to treat it. That was July 2020. Long story short they never figured out what the infection was and it spread from my left hand to my right. My hands turned black blistered and began drawing significantly. I had open wounds on both hands until June of this year when the last one finally closed. I have 20% function in my left hand 25 in the right with my forefinger permanently drawn over and both hands severely scarred. There were many times throughout this ordeal when the pain was so bad I begged God to let me die. Thankfully he did not. I'm learning to live with the disability, however I still have no answers for what the infection was and I'm terrified that it will come back. I am grateful that you got answers and are recovering so well and I truly hope you are able to have the family you so desire sorry for the long comment it's just most people don't understand what it's like to go through something so horrific and not have any answers. Thank you for sharing
Damn! So sorry for this :( It sounds so terrible and horrifying that there are still diseases we cannot identify and treat the right way. Hopefully you will, too make a full recovery with time!
@tngirl79799 I’m sorry hope you get some answers. Maybe also contacting the CDC and or NIH. I’m sure the Drs at the hospital were great but, it won’t hurt to get an opinion from national institutions.
Gareth, you’ve had such a traumatic journey. Thank you for having the courage to share your story. It’s awesome you had your family, especially your mom, supporting you. You’re an incredibly brave individual!
@@GarethLeonard You are such a fighter Gareth, if you get a calling please look into Joe Dispenza work and using your mind to heal.... If sounds so woo, woo but i promise you his work is life changing. If it doesnt reasoante then let it go you have nothing to lose. Take care and all the best from the UK
@@GarethLeonardtry research in Portuguese, Fiocruz website has some information on treatment. Doctors in the Amazon area have knowledge of this disease and how to treat it. The word in Portuguese is Leishmaniose. Para todas as formas de leishmaniose, o tratamento de primeira linha no Brasil se faz por meio do medicamento antimoniato de meglumina (Glucantime). Outras drogas, utilizadas como segunda escolha, são a anfotericina B e a pentamidina. Todas essas drogas têm toxicidade considerável.
Thanks for sharing your journey. As a retired Public Health Care R.N., I want to say that our local Public Health Care clinics were once an invaluable resource for people suffering from contagious disease. I worked Respiratory Disease (a lot of tuberculosis), but the Special Disease Clinic across the hall dealt with all sorts of disease from sexually-transmitted disease, newly-emerging HIV, and leprosy. It’s a shame our nation does not fund and promote local public healthcare agencies. We are facing such urgent health care challenges. We need to advocate for and fund local public health care services.
Yeah. The covid pandemic made it clear that "public health" doesn't exist in this country. Only capitalism. And I agree!! But even our local public health care services are downplaying the fact that the pandemic is still ongoing, and also the fact that a vaccine-only approach that doesn't emphasize wearing masks in public spaces, free PCR, testing, asymptomatic testing, paid sick leave, etc. is not ever going to end the pandemic.
Your point about being your own advocate is so important!!! I went through something similar with my late fiance. He just couldn't make himself ask questions of, or challenge, his doctors for better answers. He blamed it on his Army training, and on just being grateful to be alive. I begged him to let me help, and finally he relented. After that, he never missed an appointment, his questions were answered, and if I didn't think the answer worked - I asked for a better answer. If they didn't have one, I'd keep after them until they found one that worked. In the end, nothing would've been able to save him. The damage he incurred was just too much for his body. But at least I gave him a better chance. KEEP PREACHING ABOUT SELF ADVOCACY!! IT SAVES LIVES!
I agree 100%...and if you are already too sick or too weak you need someone to fight with you ! If I hadn't my boyfriend insisting for doctors( in the hospital already) to help me when I was in severe pain, unconscious, not eating for over a week, not even able to drink one drop...I would've died....that is for sure.
@@wandavision8567 Oh honey, I know right?! I'm so glad you had someone to advocate for you! It makes a world of difference. Knowing you have someone in your corner, ready to go as many rounds as necessary on your behalf is priceless.
I wish my boyfriend would help advocate for me but he is just as timid as me :/ I hope it won't affect any of our lives, we 100% need to work on our confidence.
Hi! Brazilian medical student here. Fascinating story and it really gives me perspective about the hardships that the US health care system have in recognizing and most of all treating neglected diseases. Since this disease is somewhat endemic here, the Pan American Health Organization Strategic Fund helps us and other countries in getting the drugs for very cheap. And I mean CHEAP. I was baffled to see the price of Miltefosine (Impavido) in the US. Here, the price is U$3.78 per pill, which is next to nothing compared to your situation. Good thing your insurance covered it. We also have the standard treatment option, which is Meglumine antimoniate, and although somewhat less efective, it is free for everyone that needs it via SUS, including foreigners and travelers. Anyway, thank you for sharing your journey!
My heart goes out to you and your amazing mom. You are so brave, and I appreciate you doing this video, it will for sure save lives. May god bless you.
I'm Brazilian, I was super sad to see this nightmare you're going through, I didn't know about this disease despite having lived in the Amazon region, I wish you well, healing and that this whole nightmare becomes the past and you can live your life as before, I wish you a lot of strength and never get discouraged, may God bless you with healing as soon as possible... Hugs brother!!!
Leishmaniose foi descrita inicialmente no Brasil e o nome comum dela é "Ulcera de Baurú" porque foi lá que ela foi inicialmente descrita. A gente aprende sobre essa doença nas aulas de ciências do colégio. Tem tratamento. É restrito mas muito conhecido no Brasil devido á polêmica do tratamento de cães infectados, uma vez que a doença afeta todos os mamíferos. Procure um veterinário e pergunte sobre a doença se quiser informações mais detalhadas mas a referencia no tratamento é o Hospital Emílio Ribas em São Paulo e o tratamento consiste no uso de sais antimoniais, notadamente o antimoniato de N-metil glucamina (Glucantime®).
ปีที่แล้ว +4
This disease is endemic in almost the whole Brazilian territory. It's not very common in humans, but dogs are seriously vulnerable of getting infected. Some species of Phlebotomus sandflies can reproduce on the wet soil of a urban garden. Almost everyone with a dog is terrified by this disease where I live.
Thank you for making this video. Difficult to make I'm sure. Our medical system is a disaster for actual health outcomes. It become all about greed and profit. Your point about being your own advocate is spot on. Trust your instinct, get second opinions and push as hard as needed.
Incredible video. The haphazard care you were given in the beginning and complete lack of empathy let alone a 50k fight for a drug you didn’t need is more grotesque than any wound photo you could show. Respect to you for being so strong and pushing for your answers. Thanks for sharing.
Excellent video. Sums up everything ny daughter as a 18 year old has been going through. She has a very different disease but very serious health conditions have a few things in common, and you mentioned them all (the dangerous toxic medication, the advocating for yourself, the helplessness, the lack of answers and clarity, the extreme physical and mental pressure, the radical change in outlook on life…) All the best to you and a complete recovery!
No words can express how infuriated and sorry I felt for you when listening to the doctors call. I know what it is like to be invalidated by so many doctors only to find out 20 years later that I was right, that something was wrong with my body. By then the damage had been done, but it could have been much worse so I thank the heavens to not have had fatal complications. Doctors need to listen to their patients, and give us time to express what WE are feeling and going through. I wish you all the best in your healing process, and thank you for sharing, I will certainly be more alert if/when I travel again.
@@TheDigliI was eventually diagnosed with Hyperthyroidism. Unfortunately my heart, eyes and bones have been affected from not having my thyroid treated during my adolescence. Hindsight, I had dozens of Thyroid Storms which could have been fatal, but thankfully I survived them. The fibromyalgia was another illness I suffered from for many years and doctors could not figure out what was causing me so much pain, and kept doing MRI’s in the area a felt most pain (mid-lower spine) but found nothing. It was not until I visited a chiropractor and an X-ray was done my whole spine did he find damage in my neck and thought it was Fibro. I then took these findings to the NHS (UK) doctors and finally was seen by a Rheumatologist who then confirmed the Chiropractors suspicions. It’s been over a year now and I’m finally able to manage my symptoms enough to where I am able to function better than I did last year, alas, there is no cure but at least I can explain as to why I can’t walk or be as social as I’d like to be. Lesson from this is to never let any doctor dismiss you when you know something is wrong.
I can't imagine how angry you must be at those previous doctors. I hope they see this! I'm glad you kept fighting to get answers, not just because it helped you get the care you needed, but because your story is going to help a lot of people.
Gareth, I am so sorry this happened to you. You are such a positive influence! I just know I am not alone in saying I am thinking positive thoughts towards your health and success in beating this crazy disease! Do not give up, stay strong even when can’t. Sounds crazy but when you have been through very tough times, “ even when you can’t” is a hard place be. Just grasp at any positive things no matter how small, they will grow until the light comes again…
I KNOW HOW YOU FEEL! I went through something similar. I was so fed up with the medical community,I went to the source: the staff that actually wrote the book on it. I spent six months in and out of hospitals, four different antibiotics at the same time, IVs, PICC lines, wound vacs, you name it. It’s amazing when you think the medical community understands what is going on but really has little clue. The medical community was unable to win the battle after a year so I ended up losing my leg below the knee. Best decision I made after living through that hell. Wish you the best in this.
I am sorry you are dealing with this disease. I am from Peru, and I went to school with a lot of kids with this disease. All of them were cure. They only had some scars on their faces, but they were happy kids running around after being cured. This was in the 80s. I am sure now there are better medications for this disease. Sadly no many people know about it. I hope you recover soon. There is cure!! I have seen in with my own eyes...😊
I studied Parasitology back in 1975. I remember most of them included Tropical Leishmaniasis. I had tears in my eyes watching your medical journey. I hope all works in your favor!! God bless you...😊
I had a rare form of testicular cancer that went through multiple misdiagnosis due to its location in my chest. These vids do help people because that anxiety when you don’t know what you have is unbearable
Your in my prayers today. I’m so sorry you’re going through this. You’re intelligent and was not just giving over your trust to that one doctor . Too many people just accept and comply. It was good to see you smile after the 7th bag. Don’t forget to reach out to the Amazonian tribe -they may know the cure.
I absolutely LOVED wound care whilst nursing. The mental health issues are something forgotten about. Brilliantly explained and i am grateful for you being able to update us all. Bright blessing to your mum an family.😊
I don't know what to say, except you are the bravest & strongest person I know of. May you survive this ordeal and heal completely. And God bless your mother.
You are so blessed that it happened on your legs. Also you had your mother. My mother is deceased and I wouldn't know what to do. And I believe you are very smart in getting a hold of the NIH in DC . They really changed everything for you. I wish you the best. You seem like a really awesome person. 💖
Hoping Gareth's battle with Leishmaniasis will end in a positive way soon. It always amazes me how many things can go wrong with one's body; it's amazing more people are walking around seriously ill all the time. It's also amazing that physicians are unable to be responsive with adequate treatment.
I commend you for being a fighter for your health! I am a Registered Nurse. I have seen patients just blindly accept what the doctor says. I have administered Amphotericin B, and the patient usually does pretty well. But, you had some unfortunate complications. Finally, you are so lucky to have had your Mom there to help you out. Mom's are sometimes left out. Anyway, stay healthy, and do well!!
As somebody with a chronic illness, I feel your struggle to be heard and to be listened to by medical professionals. You had a long battle to get what you needed. I know a lot of others who suffer from my disease who have given up being heard or asking for what they need, because over the years and years they get exhausted, especially when a disease has no cure or treatment. If you have a loved one who is battling - help them advocate, help them find answers, help them fight. The medical system has a way of making us all feel small and stupid and insignificant. It can make well meaning doctors and nurses powerless to help, fatigued, overworked. We all need to help each other find resources and, when we do find something, we need to spread that knowledge like YOU are doing, Gareth, by making this video. Thank you.
Fellow San Diegan here... my fiance and I have been watching your videos on And off randomly throughout the years. I just watched your video, and I'm in tears. I'm so happy that you're spreading awareness about this horrible rare disease you are unfortunate to catch... I'm also as awful as this might sound as I never wish anyone to get anything like this but am very very grateful that of all the people in the world that got it, you were about to document and share with us your difficult journey as I'm certain you'll have inevitably saved the lives of countless other humans out there that will no doubt be afflicted by this in the present and future. Thank you for what you do. Sending you virtual hugs and good vibes, and NOW after all these years watching your videos, I'm now a subscriber, I'm sorry it took this long. Thank you thank you thank you. Now I'm looking forward to you covering more good eats across our beautiful city 💔💝💖❤
You are so right that we are our own best advocate! So glad you found NIH and they were able to help you! Sending thoughts and prayers for continued healing! Glad you included precautions that can help prevent things like this. I’m sure your story will help others!!
Thank you for sharing this dreadful experience and raising awareness. I am from Africa and ..... getting into "fresh" water, be it a river or a stream, etc..... is something a majority of us just don't do.
I grew up in the Republic of Panama and those tropical diseases were always on the backs of our minds. I am so glad you fought for yourself and got the treatment you needed.
So was this man just really unlucky then? All these people swimming in the same water, it must be a common problem in some regions then? Jungle is scary man, where I grew up it’s cold and snowy for a large part of the year…. Only thing to fear there is moose and bear.
@@tiko4621 It's not uncommon, but people are diagnosed and treated immediately. They took to long in his case and the suffering only gets worse every day you delay the treatment.
I so much appreciate what you have gone through and how you took a stand in your medical treatment. I'm 79 years old living in assisted living, l don't have a lot of computor knowledge as well as standing up for myself. You are a smart man and You found a way to deal with people who just can't get involved enough to be tied down, so they give you a placebo and make you feel foolish for not treating them like God. Keep up the good work and welcome even us old fogeys.
I loved listening to your story. As a medical professional, my first intuition was to seek help to the region where the infection was acquired as it's endemic in that region. Experts would have been well aware of your condition. Western medicine is different and unfamiliar unfortunately. I'm glad though that you got your answers.
@@Kv-nb1gm it's always an advantage if you know a family or friend who is in the medical field. They'll direct you straight to the experts. Western medicine still has a lot to learn about tropical medicine. Thank God we have the NIH and CDC.
I am an electrical engineer, we don’t get to make dumb excuses like that’s in our field. The problem is with the AMA and the caliber of students who get into medicine, need more analytical minds. Not English or physiology majors into medicine.
The medical grade honey derived from the Manuka vegetation, found in New Zealand & Australia, has been found to have therapeutic benefits with staph skin infections. In addition, the more potent Jarrah honey is even better…but is more difficult to obtain.
So sorry you went through this. I got sick at 14 and was met with similar dismissive responses, indifference, and even disbelief. I had to learn to be my own advocate and be the squeaky wheel. I finally got a diagnosis at the age of 21 yet still have to fight tooth and nail for every medication, insurance coverage, appointment and therapy. I’m 31 now and I still have to fight for help. It’s exhausting. I’m just grateful I have parents that have scooped me up and dragged me along when I can’t do it myself. Not everyone has that.
Isn't that great in supposed to be the most free country in the world usa 😂, you would have had everything free here in the uk , with the best tropical medicine and medical health for tropical disease in the world.
@@FaceFcukwhat is the point of your comment? 🤔 ..... "hi, I'm going to randomly talk about something completely irrelevant to what you said, but I get to make myself feel like I'm better than you in some way" 🙃🤦♀️
@@alexpeters7987People outside the US LOVE to bring up our flaws as a way to make themselves feel better in their “flawless” country. When you strip it all back, they are literally just sneering and “showing off” to HUMANS who are in need of a better health system. That being said, these people think if we don’t pay up we won’t get treated. 😂 There are many programs available for free or affordable healthcare in the US and when all else fails you STILL get treated. You rarely see an American in the comments being that way with any other country. Not only is it annoying but it hilariously brings their internalized inferiority complex to light. I said what I said.
I finally found someone who has the same parisite. I know exactly what your going through. It took over three years to over it. Good luck to you and don't be discouraged. You will get better dude. Keep the faith. Peace on the path.
Here in Brazil, the standard treatment for leishmaniasis is Meglumine Antimoniate combined with Pentoxifylline. If the disease progresses to the visceral type, then Meglumine Antimoniate is replaced by Amphotericin B, which is also combined with Pentoxifylline for optimal effect. The wounds are frequently debrided and then receive an emulsion of Paromomycin 5%. Once the wound absorbs the emulsion, it's dressed with water solution of Potassium Permanganate 0.02% (it helps with cicatrization). Some doctors also administer IL-12 (it optimizes the topic effect of Paromomycin).
@@EShirako thats because our doctors are trained by big pharma, they dont know anything about old cures we used to have before the rockerfeller and rothchild purchased the medical field back in the late 1800's and early 1900's all thanks to the flexner report, it completely changed how we go on with medicine, from holistic to petrol based and look at the mess were in. We cant even take care of a problem that was well known for hundred of years and was cured by anti parasitic cures. Parasites are the number 1 problem with our health and no doctor will ever venture that subject because they dont know nothing outside their pre constructed education aka indoctrination.
Wow! I cant believe I found this... My 19 year Daughter has just been diagnosed with leishmaniasis braziliensis here in Australia ( after contracting it in the Amazon months ago) Such a worrying time waiting for diagnosis with the confusing and sometimes contradictory information online! She just started miltefosine this week as her team thought this was the best treatment to start with for braziliensis. I am so grateful for the treatment she is receiving here in Australia from specialist microbiologists / Infectious Disease doctors who have spent long appointments explaining everything in detail while remaining reassuring they had a few options available. She has been seen many times at the hospital and is being closely monitored. She has had blood tests , biopsies , ultrasounds, medications, check ups and check in phone calls etc all of which is free here due to Medicare. Only cost so far was $30 for the Miltefosine which they had to have flown in. Thank you for this video! I can share it with family and friends as it is difficult to explain something so unheard of here.
Could active Manuka honey help?? My ICU nurse friend takes it to treat ulcerous sores in under developed places but I don't know how Leishmaniasis will react, just that it's generally very good for ulcerated wounds
I hope your daughter has a speedy recovery. Having something wrong with you or ur child is scary AF. I had to ride in an ambulance this year with my son who just turned 5 and I never want to do that ever again it was the scariest thing. We are trying to get a second breathing Dr bc he's on a lot of steroids. But having something very rare and trying to get adequate medical care has to be hard.....this man could have died if he didn't take things in his own hands. This medical gaslighting and just shrugging ppl off has to stop. But our ( American )whole medical system is fucked. Which really sucks. Hopefully it changes.
@@WeldingQueen Yes nothing as stressful as a sick child and ambulance rides are traumatic! We just love our babies ( mine now now teenagers ) so much. Good luck with your son
I am so glad that you highlighted the difficulty of dealing with a medical system where doctors think they are god, entitled and know so much more than you. The phone call that you had with the infectious disease "specialist" demonstrated perfectly the fact that, even though doctors can hear, they do not listen. I am a veterinary neurologist and I have dealt with this many times with my son and my ex-wife (still best friends). I have learned that the ones that listen and do not talk over you, know the most and are the ones to trust. Thank you!!!
I can ensure you that most doctors do not think they are god. Doctors save lives every single day I don’t understand why this whole comment section is shitting all over them, they dedicate their entire life to their career (12+ years of schooling sometimes) and hundreds of thousands of dollars, TO HELP PEOPLE.
@@UrbanMattsUS doctors have been shown to have higher rates of neglect towards female patients’ pain, even more so for black female patients. If you have a chronic illness or anything unusual, getting the help you need can take years to even be diagnosed. I have personally experienced this many times and I know it’s not uncommon at all. The average time it takes to get an endometriosis diagnosis is 7 years. That’s not for lack of trying. It’s because doctors refuse to LISTEN.
@@virtualgambit577 it’s more of a problem with the healthcare system than anything, there’s a shortage of doctors and the system is set up to get patients in and out fast. Doctors have limited time to deep dive on your symptoms and they see hundreds of health issues weekly that may present similarly. Whenever I have a health issue I will always do many hours of research, self diagnose, and present my conclusion to my family doctor and any specialist I can see. Most people won’t take charge of their health and expect a 10 minute doctor visit to fix a problem that has been accumulating for years, and then blame the doctor when it can’t get fixed or solved that day.
@@virtualgambit577 it gets deep though because the system is also in a way set up to produce some of the know it all doctors who may be negligent because good empathetic people who can listen and could become great doctors will get edged out in admissions by the straight A+ students who have never worked, have no people skills (slightly autistic), have no empathy etc. because they are “better candidates” aka they did better on standardized tests in undergrad that have no relation to medicine.
@@UrbanMattsReally, their sole reason they seek this profession is to help people?? It's not because of family pressure, status, money, etc? I have run into many doctors with a God-complex, total out of touch dickheads, kinda of like that one on the video call with this subject of this video. I have also ran into many that are humble and genuinely caring.
Just found this video after studying L. braziliensis (weeping lesions). Didn't have any idea that this disease was so neglected 😢. I hope people with a lot of money will fund the research for this disease for medical advancement and healthcare of the patients. Thank you for sharing your experience! Praying for your fast & complete recovery!
So glad you found that support group! I was diagnosed two years ago with a very rare autoimmune disease (about 1 in a million) and finding a small support group on FB of people with it from all over the world was extremely helpful and comforting. You are 100% right about self advocacy as well. Hope things keep looking up for you!
After 12 years of extended hospital visits and specialists, I finally found out I have a very rare autoimmune disorder, too. I know that helplessness when doctors don't know and aren't listening. I'm happy you got your diagnosis and wish you good health.
The second I heard you had staph infection really scared me because my mom fractured her femur in three places and got botched surgery where the metal was too big for the leg which caused the staph infection, she had to have her entire femur bone drilled out and have antibiotic beads put inside in order to slow it down the infection, she managed to live with it for 10 years but died on July 26th 2020 12:06 A.M. it's amazing to think someone like me who forgets dates and times all the time will always have that day and hour forever imprinted inside my brain. Hopefully everything is well now and I hope you never have to suffer through crap like this again.
😮e gosins so sorry for the loss of your mom. Hope you sued the pants off the doc that screwed up her leg. Some people that fancy themselves as doctors and nurses should be flipping burgers instead.
this sounds so horrible...I hope your mom did not suffer too much. :( But yeah, I can totally relate to you mentioning not being good with dates but having those numbers imprnted in your brain. Got them too.
Gareth~ I myself am a retired nurse and wanted to ask you if anyone offered you some therapy to help you cope with your diagnosis, prognosis, and recovery? Spiritual care? Nutritional care? These things should all be in your care plan. These are all crucial for healing. I give your Mom praise (Parental Love) for walking with you on this journey and holding your hand to combat this disease. Maybe with your platform, you can become a driving force and advocate for doctors to know about International diseases and how to treat them through your experience with this one. With many more people now more than ever traveling all over the world, I am sure we will see more infections/diseases in the future. I am praying, and sending healing vibes for a complete recovery and stay strong. ❤
I am so sorry for what you’re going through. This is terrible and evidently so painful. I am pleased to see that you have the support of your family. You are very courageous and positive. You are a warrior and you will beat this. Take care friend.
I'm a Peds RN. We called Amphotericin B Amphoterrible. You are so right about being the only person who can advocate the best for you is you! Stay courageous and be blessed. Thank you for sharing. I guarantee someone gained knowledge on what to do for any health issues that they do not have an answer for themselves!❤
I'm a pharmacist and we used to call it that as well. But in the end, this guy should not have had to suffer this long and this much. The benefits far outweigh the POSSIBLE kidney damage which can be monitored. This fear of what could be is not acceptable when it comes to patient care and long-term sequelae. I have a friend at Baylor who did his PhD on Leishmania. If Gareth still has problems, maybe a conversation with him might be helpful.
Gareth, tears have streamed down my face watching your entire video! In the past year I've had a mystery illness that started with an unknown flesh eating virus that traveled up my left arm (I also live in Southern California btw, but have not traveled out of the country.) I've seen multiple specialists and none knew what it was. It has come with a plethora of other intensily painful symptoms that feels like an infected tooth abcess nerve pain in the entire left side of my body! The good news is the original skin legions have finally healed, but recently new small ones appeared and the pain is getting worse, the most being a feeling of attack in my left side of my spine wrapped around my left abdomen which feels internal. I've had countless bloodwork, CT scans, MRI's, Ultrasounds, etc. I just long for ANSWERS! I really empathize and relate with the medical fears of not knowing what to expect. I am praying for you to be fully healed of this horrific disease, and if you pray (or anyone here), please pray for me to find answers too so I can be healed and be out of pain and hopefully live a normal life again at some point. 🙏❤️
You need to reinforced your immune system,do some inner cleanse of your body,eat raw fruit and organic veegiee broth . Also look for Yuen healing system and Reiki. Blessings
May the Lord give the doctors wisdom to help both of you. I pray for peace, rest and total healing for your bodies. May you know that He is your healer.🙏
After watching this video, have you considered contacting the NIH? If you’ve been diagnosed with an unkown or unspecific flesh eating virus or bacteria, but it hasn’t responded to the treatments you’ve been offered, that sounds like something they’d be interested in. Flesh eating anything is no joke, and, while I’m not a doctor (I’m a professional patient of almost 40 years so I’ve picked up ALOT), I can’t help but wonder if you’ve been misdiagnosed, as so many of us with complicated symptoms are. I only say this because flesh eating bacteria isn’t commonly survivable if left untreated, and it doesn’t sound like you’ve recieved the appropriate treatment. As someone that was born with a chronic health condition, and, in recent years, has been heavily mistreated by the medical establishment as well as by inadequate doctors and doctors that simply don’t care, I truly know how frustrating and demoralizing it can be to go through this, and I’m truly so sorry that you’ve also been forced to fight for answers. Feeling that way can make it so hard to find the strength and motivation to continue to fight and advocate for yourself. But know this… you are strong and capable and you’ve got this! I’ll say a prayer for healing and that you get the answers that you need and deserve. God Bless.
I am very sorry for all the suffering you have gone through and continue to go through. You, whether or not consciously aware, the doctors and the medical field have gaslit you so badly. Just remember you are the one who is in your body and you know how you feel.............am very glad you have in the end found knowledgeable people. Sending peace, love, and light to you.
I can't even imagine what you've been through. I thought I had bad when I was diagnosed with cancer.... at least they new what I had. I'm very happy for your recovery and that you stuck to your guns and kept looking for answers. Best luck to you, keeping you in our prayers. Thank you for sharing your story
Very informative and honest video. Its good that you recorded throughout your ordeal and now help many many others. Wishing you a speedy recovery.❤❤❤❤❤❤
It's unbelieveable how such a small thing like an insect bite can almost kill or traumatically disfigure you. Nature, you scary..! - Wishing you all the best, Greetings from Germany!
Wow, this video is eye opening. I’m really glad you’re on the mend! I’m a digital nomad and I’ve come to the realization that the American healthcare system is broken. I receive better health care in other countries and I happily pay out of pocket because it’s actually affordable and the overseas doctors care about your overall health. Best wishes to you on a speedy recovery! ❤️
I almost cried with you when you got choked up. I wish for you be healthy again. I pray that you don't get any lesions at all ever again. You are completely right about advocating for yourself...I've had my share of experiences with bad doctors. Again, I wish you the best! Thank you for sharing your harrowing experience.
Good on you for not just sitting there and taking what the first doctor told you. Sadly, these days no matter what condition you have you generally have to get so many opinions and the hardest thing is finding the person who can really help and knows their stuff. You have to be your own manager. Which is hard when you feel bad, in pain and don’t have the energy. Sending hugs.
![[LIVE] : ONE ลุมพินี 88 | คู่เอก "ป้อมเพชร vs อัสลามจอน"](http://i.ytimg.com/vi/1ZqTVVbMgbo/mqdefault.jpg)
Thank you for watching! ❤ Join me over on Patreon for more → www.patreon.com/GarethLeonard
please rersearch msm, but don't rely on google search or main stream news
I remember story with someone bitten by a deadly spider and they cure it with MSM (chlorine dioxide)
good luck
*mms
Speedy recovery Gareth! You are an intelligent person and you did the right thing to your health and your person is the most important thing I would have acted like you! Brave, I will follow your recovery for Patreon
Well, it’s about time you got yourself on Patreon. You know I signed up right away. 💯👍🏾
Gareth, have you tried colloidal silver?
Im sorry you got LM , I live in the Amazon region of Brazil. Both me and my wife got cutaneous Leishmaniasis it in 2007. It's very good the dermatologist did a biopsy and you got a positive diagnosis. Glucantime is the standard treatment here. The course of treatment is 20 to 30 doses applied intravenously. Im happy to say that it is curable. The downside is the medication is rough on the body. I would recommend anyone infected with the Brazilian variant get specialized treatment here in Manaus at the center for tropical diseases. I'm shocked at the lackadaisical attitude your physician took. It is serious and should be treated aggressively. The NIH has a good tropical medicine department but Brazil has much better treatment due to the sheer volume of patients and national studies. I hope your treatment is 100% effective and wishing you a full recovery. For anyone else who may be in your situation know that there is light at the end of the tunnel.
bumping this comment!!
I hope he read your comment. I felt his disappointment and helplessness. I understand the desperation ❤
Also its free.
That was actually my first thought. I would have flown to Brazil after the first week of not being taken seriously.
Thanks for sharing, vizinho🙏!!! Here in Brazil we do have a lot of endemic regions and we must protect ourselves and our pets!! Fortunately there is treatment for all. For pets I know we do have even developed a vaccine, but I don't know if there is any option for humans...
This video is going to save lives. Medical gaslighting has gotten out of control and it’s time we normalize showing others what it looks like and how it effects us. I’m in admiration of your courage and resilience, despite many setbacks. Keep fighting the good fight!
Seems that all the insurance situation and crazy treatment prices on US is conter productive in the sense of getting best care possible...
Yes!! I always do tons of research before I go to my doctors and I write down what they need to know. I’ve had to really fight to get some medical issues treated.
Doctors aren’t Gods and we need to speak up and ask questions.
Beautifully said
Medical gaslighting.. That's exactly what it is!
Sadly its less gaslighting and sometimes just too many doctors think they either know everything or they literally just know nothing. Obviously there are doctors who do in fact gaslight people. But sadly in this guys situation it was a combination of people believing they know too much and just it being hard to find someone that knows anything at all. The reality is that because we [Rich Western countries] don't normally deal with these sort of things- there's little to no research into any of these "common" conditions and the unfortunate reality is that it won't change until it starts to hit the richer countries more often.
The oath of dr's being dedicated to doing no harm and doing the most possible within our capitalist system does not breed true research and exploration into the betterment of human wellbeing. Doctors used to go to school and study illness with a vin and vigor that it could be considered obsessive just to know more about the world and the human body. But now a dr can't even do such research for the betterment of humans as a whole unless its proven to be able to make money long term.
The problem we have within our health care systems, and science as a whole is a loss of compassion, a loss of true desire to push the boundaries and above all- greed for wealth and power. The likes of which are really only temporary for those who gain it.
I found this video and about a minute in, I knew your story because it is also mine. I was bit by a sandfly (on my face) while to the jungles of Belize in December 2021. I was finally diagnosed with leishmaniasis after several months and several misdiagnoses. I was treated in Vancouver with miltefosine which was a brutal 28 days of chemo that did not work. That was followed up by 14 days of infusions of amphotericin B which also didn’t work. This making me the first Canadian patient who failed to respond to the two top treatments. My infections disease doctor tried other treatments which were equally unsuccessful. I pushed very hard to be treated with pentavalent antimonials which is the most common treatment in central and South America where this illness is common. I was eventually given interlesional injections rather than intermusculaire which causes more side effects. This worked and after 9 months of treatments I finally felt I was on the road to recovery. Now I am preaching to every traveler I know to always wear bug spray. A little precaution goes a long way.
Oh my god, what an insane story!!!! Thank you so much for sharing. Let's connect directly. I would love to hear more. Send me a DM on IG if you're interested.
@@GarethLeonard I sent a message on one of your IG accounts - wasn’t sure which one :)
Thank you both for sharing your stories. I'm so sorry you have had to face this incredibly difficult and painful journey. As another person has commented, you both have likely saved lives, as well as saved people from lots of misery, pain, heartache and fear. May God heal you both completely, and may He spread this information to doctors and sufferers around the world.
@@GarethLeonardyou may want to look at the raypeatforum for things that people have tried that you may or may not be aware of.
All I can think of is WOW😮!! thank you for sharing your story
The first doctor was so in over his head. Makes me mad to hear that a person with that many years of education cant see that and point you in the right direction instead. Good luck to you man and stay strong!!
Parasites are getting Alot of people sick and about all regular medical doctors don't know about them. Everyone should deworm many times a year
I have a condition that results in severe sweating from some of my sweat glands. I had read about it throughout severals years and finally went to see my doctor about it. I knew about what sort of treatment was viable either through medication or surgery and what NOT to do.
He was very arrogant and completely dismissed everything I said I had read about the condition and told me he was the doctor and not me. He didnt know anything about it and straight up did a quick search on their database right infront of me. He went right ahead and proposed I would need surgery - a surgery that experience said would worsen my condition over years.
Im a big guy and in my 30s. I dont get very emotional often or at least show it infront of others. I broke down in tears when I visited a dermatologist that knew everything about my condition and proposed medication and not surgery. She literally sent a very stern message do my doctor and scolded him.
@@innominatum9906 Happy to hear that it work out for you and that some justice was made!!
Btw, my wife is a Dr and just told me all the treatment you needed in 5min, and she was sad to see you suffer like that. She said every medical student in Brazil knows the treatment for this disease. She said you are young and will get out of this. Get better my friend.
Brazil sounds good!
Como aluna do 8º semestre de Medicina no Brasil, eu concordo com a tua esposa 😅
what's the treatment?
Bump
why didn't they have him put something like neosporin on these infected lesions? couldn't it at least stop it from getting staph in the open wound and rotting?
I am a research scientist from Brazil and I am a witness to the efforts of Brazilian scientists researching this disease. I was part of a research group that runs research on Leishmania and can tell you, although the Brazilian government does fund research like that it is not enough to progress forward in the speed needed to help people. Your video just comes to show how important it is to invest in neglected diseases. It is endemic to "poor countries" so nobody cares but, as you can see, disease travels much easier now. I hope your video creates awareness about Leishmaniose and if you need contact with specialists in Brazil (which are most likely much more familiar with the disease) I am available to help with that.
South Africa has the cure for 30 years,the med used has been given out for free and still is it kills many different parasites,this poor guy got the run around ,as a matter of fact its on the NIHs meds list to have for Parasites!!😢
That sum's most points! TKS! The one thing you didn't point out was about the careless of us healthcare system they are trying to copy and apply here in Brazil... Bom, como toda doença provocada por protozoários, são de difícil tratamento, e ainda mais difíceis de encontrar medicamentos eficientes.
So kind of you ❤
I was just going to suggest that that I would have checked local doctors treatment I'm sure they experience it more often down there The treatments might not be as advanced but they know what it is Good story and so far the ending looks good Good luck guy
I'm curious if topical applications of manuka honey or anti-parasitic drugs like fenbendazole help?
Mama by your side makes it less scary. Doesn't matter how old we become, we always need our mothers to comfort us through the difficult times. I loved that she was with you.
thank God for mom. She must have been praying hard for him and sending positive energy.
There's nothing compares to Mothers Love
Poor lady she looked very upset. Hope everything gets resolved soon
Word! 👍
One of the sad facts I learned on my son’s journey through brain cancer and severe seizure disorder is that most doctors suck, aren’t good at what they do and basically burn through their days doing as little as possible to pay their bills, just like much of our society. Finding a competent professional who actually cares is a huge battle, then holding them to the highest standard of care possible. I’ve found that if I bypass local docs, and go straight to the best hospitals in the state, the country with the exact specialty in your disorder will save you a lot of time and may even save your life. I’m in North Carolina and I’ll drive hours to Duke and Wake Forrest, which are the two best teaching hospitals in our state. I’m glad you fought for yourself and found the right docs. It’s frightening to think what may have happened had you not gone to battle for yourself. Hugs to you. ❤
Same! I have a rare disease and learned quickly that local Drs / hospital didn’t know anything about what was wrong with me. Went to the best teaching hospital in my state who quickly referred me to the only Dr in the world that treated my disease. Local Drs said my condition was terminal and I had maybe 6mo. That was 15 years ago and I’m considered cured now. You are your only best advocate!
Sucks that people like us are called Dr. shoppers and chasing unicorns. Friends and family thought I was exaggerating my condition. When I was ultimately diagnosed and had to be treated out of state with a specialized open heart and lung surgery the naysayers ate some big slices of humble pie I was told. They are no longer in my life bc I just don’t need that negativity.
How do you find those hospitals? I’ve gone to 14 different drs with no answers.
The problem is that everyone expects their doctors to be Dr. House. - Super-genius doctors like him don't exist. Hell, his entire department (Department of Diagnostic Medicine) doesn't exist. It's fantasy created for the TV show. Doctors are trained on what's common in their area. If you're in Cleveland Ohio, doctors aren't going to know a whole lot about Amazonian parasites. If you're in the Amazon, their doctors aren't going to be too knowledgeable about Brown Recluse spider bites. This isn't a fault of the doctors, they cannot learn everything there is to know about medicine, that's literally impossible. So they have to specialize in what's common in their area. General practitioners know enough to identify an issue, then refer that person to a specialist. His doctor didn't do that, or referred him to the wrong specialist. It sounds like he was talking to a dermatologist when he should have been talking to a doctor that specializes in parasites. By the way, MRSA and necrotizing fasciitis are tens of thousands, if not millions of times more common than leishmaniasis. The doctor was not wrong in suspecting that it was the former, as 999,999 times, that's precisely what it is.
couldn't agree with you more! Sending love and strength to you and your son Xx
I , too go to a teaching hospital and my treatments have been great. I need to share what been happening to our hospitals, and as a consequence ,our doctors. Our medical has been taken over by business investors and corporations who know nothing about medicine. They only care about profits. I have known doctors who retired early because they couldn't stand what treating patients had become. 15 minutes per patient 30 minutes on the computer. The more patients they see the greater the profits. Their bosses are not doctors but business men. The doctor is chastitized if he or she spends more than the allotted time. It's a no win situation for patients or doctors.
There are many doctors who care but in America you're screwed if you're poor and now if you have a medical insurance. Deregulation of business has allowed this to happen. When banks own health care insurance companies you and many have experienced the results of it. Another nasty result is more students who care about helping people are choosing not to become doctors . Becoming a veterinarian allows the time to care for the patient 😅.
For those of you who travel a lot. My family usually visits Africa and we often have gone into some isolated parts of various countries. What we have learned is that if we develop any diseases within a year of traveling from any African country we need to consult with African physicians that work in those areas. Usually the same applies for other countries as well. This principle can save you a lot of heartache especially if you travel to a lot of isolated parts of the world. I remember one traveler who developed African sleepiness disease which was missed by many physicians however within one consultation a Kenyan doctor diagnosed him and even gave him a treatment plan.
that exactly was my thought when he said that there are only 8 specialists on the matter in the whole USA
HE WAS ALREADY IN THE STATES WHEN IT STARTED GETTING BAD SO HE WENT TO A LOCAL DOCTOR
Yea you can’t catch a disease in Mongolia and then come back to the United States and expect good treatment. Even with some of the best doctors they’re not well versed in diseases they don’t commonly see.
@@Foxyfreedom HE GOT TO THE STATES NOT KNOWING HE WAS ILL THEN HE GOT ILL AND HE WENT TO A LOCAL DOCTOR..
African sleepiness disease isn't the only disease that can kill you in Africa. Ebola virus disease and Marburg virus disease are found in sub Saharan Africa Ebola and Marburg viruses are rare but deadly viruses known as viral hemorrhagic fevers which are capable of causing high fever shock multiple organ failure and severe uncontrollable internal and external bleeding since viral hemorrhagic fevers damage blood vessels and interfere with bloods ability to clot. Ebola has an incubation period of 2 to 21 days with an average incubation period of 8 to 10 days. Marburg virus has an incubation period of 3 to 21 days with an average incubation period of 5 to 10 days. One thing that's important to note with Ebola and Marburg virus is that once a person is infected with Ebola or Marburg they are only contagious once symptoms appear people who are infected with Ebola or Marburg and are still within the incubation period and not showing any symptoms are not contagious and cannot transmit Ebola or Marburg to anyone. Viral hemorrhagic fevers like Ebola and Marburg are only contagious once symptoms appear and are not contagious during the incubation period. Ebola outbreaks in the past had fatality rates between 25% and 90%, in patients who seek immediate medical attention for Ebola the fatality rate is an average of 50%, but Ebola can still have a fatality rate of up to 90% depending on which strain of Ebola is involved since there are different strains of Ebola. Historically Marburg virus had a fatality rate of around 70%, but it's worth noting that case fatality rates of between 23% and 100% have been reported for Marburg virus.
Just 4min into the video, I showed my Amazon Brazilian husband the picture of your calf and his immediate reaction was LM. For the price of the drug they first offered you could have traveled to Brazil and be treated by people who know this disease.
So sorry you suffered so much especially with the lack of correct medical attention at first. Wish you the best recovery !
American healcare is non existent and predatory
That sounds a bit whacky, is the efficacy of those treatments proven?
@@ChrisPatrick-q6kyes, and are also for free in Brazil, for everyone, even foreigners
@@ChrisPatrick-q6k
Yes because the disease is endemic there
@@ChrisPatrick-q6k probably, medical treatment in US is REALLY expensive. That's why people from the US often travel to Mexico or some other country to get some more specialized (more expensive) treatment.
The inability of some doctors to say "I don't know" is infuriating.
Because they really don’t know, he just said why….
It is not common HERE, if he stayed where it happened I’m certain he could’ve gotten sooner treatment. You can’t blame the drs here when they are trained for what happens HERE more commonly and not the other side of the world, where the doctors there are trained for what happens there.
Yes there is the one specialist who knows about it here, so one ☝️ specialist out of the thousand of drs. Like he’s doing he has to dig for that professional here.
@@OctoBear88 lol. I love that even after people watch videos like this they STILL think doctors are some supreme beings. 99% of they are worthless hacks unless you have simple shit like a broken arm. You'll find out one day. Good luck.
They will gaslight you instead of admitting they dont know.
@@OctoBear88 congrats on missing the whole gist of the message
bruh study medicine and u will know why they say they do not know
The psychological aspect. .. it’s a beast in itself. As a cancer survivor I had become a hypochondriac and recluse. Despite being so positive and so strong fighting the cancer, it was afterwards that kicked my $&ss. For awhile bump, etc. put me into a spin of “oh my gosh the cancer is back” It was insane. Thankfully, I am 10 years no 12 years cancer free and as each year passes that fear resides. Now my obstacle is being a germaphobe. An obsessive compulsive germaphobia . All I can say is stay strong Brother. Keep the faith and stay strong.
This! I had thyroid cancer and now my once healthy body is a mess. I've had dental issues from the radiation and many abscesses. Next, I've had H. pylori, C Diff (nightmare), Covid twice which left me with looong Covid, a Brown Recluse/fiddleback bite (for which I'm currently being treated) and a flu of unknown strain. This has all occured since the beginning of 2020... I'm EXHAUSTED and don't know how much more I can stand. I am afraid to get sick again.
I survived necrotizing fasciitis. It’s maddening to advocate for yourself, and yet so necessary. A Drs life doesn’t change when your health fails. Only yours fails. You’ve been an awesome I’m so happy for you
You are a very fortunate person to be here. my ex husband had 3 amputations on his leg up to the highest point they could go up to his hip
Was Ivermectin ever considered? Many who had terrible symptoms from the Covid shot, had to advocate for themselves, also. I learned that the majority of doctors will not delve into the difficult cases. Frontline Doctors (FLCCC) are very conscientious. Dr.Paul Marik & others, think outside the box. Glad you're doing better, & thnx so much for posting this!!!
Two years ago this week I contracted necrotizing fasciitis also…in my eye! Also, in addition to the staph, I had other lethal germs and the fungus aspergillosis. I had two debridement surgeries. I am blind in the left eye. I was 79 at the time, immunocompromized, have Ms, RA, PMR, Giant Cell Arteritis and several other diseases. I was not expected to survive but I did anyway! The puzzle to me and the large team of doctors was how did I get it? I am obviously disabled, don’t drive, live alone, have good hygiene (retired Nurse Practitioner) and live in a senior apartment. The mystery continues.😊
@@lilaalexander9449 You actually went thru hell on earth. God bless you and I adore lNP
Attention attention how did oxide food grade hydrogen peroxide kills parasites enemies in your body take a couple of drops in a glass of distilled water several times a day and each progressive day you Increase the drops of hydrogen proxide in the glass of wate.
Followed up with a 10 day fast of no food in it will starve out and kill the parasite!! The evil pharmaceutical industry and the medical industry want everybody dead and they will load you into believing that it is more complicated than the prescription I gave you above...
As a brazilian doctor, thats a disease we study in medical graduation, so every brazilian doctor know about this disease and the treatment is for free here. Here we have one of the best infectology medicine in the world!! Big places to treat a lot of weird diseases. So for people that got infected in Brazil, its good to seek those centers like Emilio Ribas or Instituto de medicina tropical
good info!
So sad you had to go thru this.
Attention attention how did oxide food grade hydrogen peroxide kills parasites enemies in your body take a couple of drops in a glass of distilled water several times a day and each progressive day you Increase the drops of hydrogen proxide in the glass of wate.
Followed up with a 10 day fast of no food in it will starve out and kill the parasite!! The evil pharmaceutical industry and the medical industry want everybody dead and they will load you into believing that it is more complicated than the prescription I gave you above...
Yeah that's what I was thinking when the pills were 50000. I would go to Brazil instead for treatment
it’s so cool ur mom went with you. nothing like having ur mom there to take care of you when you’re going thru something like this. gotta love your momma!
Doctors are a great example of how pride can not only hurt you but also others. I’m glad you found help. And it is great to remind people of this: you are your best advocate.
Well, nobody knows everything.
But doctors should know better. We saw just how easily they give up independent thinking in early 2020 right through to 2023.
Better than taking placebos though they try their best it’s better than nothing tbh
Tbh Covid was a terrible disease they tried though.
Nah the conspiracy lunatics gave up independent thinking
I have a friend who got LM in Colombia in jungle and returning to U.S. for wrong treatments and thanks God he listened to a friend who told him to go immediately to Brazil where they know this very well because of all the cases there and he went through treatment there. Was hard on his body but he healed great and is in good health now. Glad to hear NIH has a good program, but if it happened to me, id go straight to Brazil, they are truly experts there if this condition. Blessings and so happy you made it through. 💓
Advocating for people like you is exactly why I’m a nurse. I can’t imagine how painful, scary and stressful this must have been. ❤
God bless people like you
Thank you for doing what you do❤ Do you happen to be close to Boston?
I thought I had LM after staying in the Peruvian rainforest; and experiencing drastic changes over a relatively short period of time.
I was later misdiagnosed w/ lupus; further gen. testing finally let all my square pegs fit into their square holes with diffuse scleroderma.
Trying to get a proper diagnosis STILL has proved nil; as my faith in the medical community as a whole has literally been shattered.
(At first thinking I had a paras¡te here in the states; having no primary I went to Mass General knowing they had a specialty in tropical and neglected diseases, was promptly put on a 5 day hold without being told I could see a lawyer, in which I would have been let out the next day...) I'm 7 years on and I'm going downhill as I have stopped seeking help ( After a series of personal tradgedies)❤ I'd love an advocate as I'm so tired, sick and in need of multiple surgeries and I'm terrified of it all😮 God bless.
I was a pharmacist. The cures for tropical diseases are largely neglected--the number one reason is they are not profitable enough. Your statement that you had to fight for your care is very true. Patients must advocate for their care and treatment. Research all you can and then demand care. I'm very happy you are well.
The curse of $$$$$$$……it brings out the worst in humans 😢
Exactly! your Health is your responsability and education is you strongest weapon
Sincerely, I would look for a dermatologist in Brazil. I guess they could have answers that doctors in America won’t have since this is not common here in America. I am a Brazilian, I believe the attention you get from your doc is way better in Brazil and there is a bigger chance you’ll get the answer you need there… there are some kinds of diseases that are more common in hot weather / tropical countries. I wish you all the best! Have faith you will be cured from this! Prayers to you.
Yes, that would have been my number one move too. Definitely making sure to go to the top docs in Brazil or Ecuador who specialize in their regional and common issues.
Thank God, he seems to be way better now! ❤
UP!!
Great suggestion. My question, are the people living in the amazon immune? Did you reach out to see if the people you were with in the jungle got bit ?
It's not a very rare disease. Amphoterecin B isn't even that hard to dose.
I'm from Brazil and I'm currently on nursing school, and it's a very common disease around here, specifically in the northern regions. I recommend you seek help in the hospitals of those regions, you'll find the help you need in no time + most of the treatment is free.
treatment is actually free for any person on Brazilian territory! great country, just a part of the popolulation is just garbage.
Interesting that's what I was thinking You should look at local treatment for that general region but good advice
I would have gone straight to a jungle shaman once I knew what it was. However, this guy is tough, and I respect that.
@@iyahbinghiiyatah2456I would've recommended a center for tropical diseases on the Amazon, but you can also have a shaman after being to the doctor. I also think the shaman would say the same thing hahaha
Here in Brazil the medicine is given by the government, for free. I'm sorry about what happened with you, I wish you a good recovery. There's cure, but I hope you don't feel any pain anymore. Best recovery!
Your mother is literally awesome. Love how much she cares for you. It really made my heart melt, bless her!
I cried when you talked about how frustrating and demoralizing it was to not have answers and to have been dismissed and mislead by your doctors. This happens so often for those of us with chronic illnesses or weird illnesses, and having lived it for most of my life now, my heart goes out to you. I'm so glad that it seems like your experience with this will be relatively short-lived, even though it probably feels like a lengthy ordeal. Wishing you all the best!
Gtfo of the American health system, it's for profit just like the prisons.
Arrange a vacation and go to any civilized country in the world with free healthcare, not only will it be cheaper but your problem will either be solved or the solution found, essentially instantly.
YES
I have autism and hyoermobility (pretty sure its HEDS because none of the doctors know why I'm getting worse and worse and all the symotoms match) and POTS too, and Ive been fighting for over a yesr to get the right treatment for my hyoermobikity (first doctor told me to go to the GYM, wich only made it worse),its so tiring, espeacially when youre underage and all doctor think your problems will magically solve themselfs when u stoo growing.
I can copy the comment I alredy posted about my whole journey, but anyways, it feels really validating to know I'm not the only one who goes through this and that I shouldnt stop fighting for myself
@@maxfischerbocca1221 Hi, fellow zebra! I don't have EDS (beighton score too low) but hypermobility and since that is not considered an illness, well... my doctors don't care or worse, they think I'm a hypochondriac. I swear, if I could change one thing about this world, it would be adequate health care. I emphasize with your pain and frustration and I hope seeing that you are not alone in this helps you a little like it does for me. Hang in there 🫂
My dad has heart, lung 🫁 disease, sleep apnea, restlessness leg syndrome, and many more things. He was suffering from all of that stuff since he joined the military. So from 1983-2004 he was fighting for answers. He got sick with heart issues around 2001, while still working as a C.O. That waiting and pushing for answers and treatments in the medical field is beyond nerve racking I can only imagine for him dealing with it.
This always angers me to hear others experiences with being completely blown off by doctors. My oldest child was five days from turning 17 two years ago when we nearly ended up having to plan for the worst. Initially that morning began with severe digestive distress, this isn’t new unfortunately as my kiddo has a genetic condition called gasteroparesis which means their stomach is paralyzed and digestion isn’t happening correctly and food is moved from the stomach to the rest of the digestive system extremely slowly and there are many complications. Pain is part of their daily life so we began the normal treatment thinking this was initially the issue. A few hrs go by and we realize that this isn’t the normal symptoms and I rush my child to the nearest emergency room equipped to handle my kiddos condition (this is the hospital we’ve gone to many times as their pcp is there and works with that hospital as well and they have all records on file usually making things more smooth as digestive condition is only part of the total of three genetic conditions that effects my kiddos body). Unfortunately, there was a physical on that day that we had never seen and according to later information we were given after the fact was a very new physician to that hospital. He was dismissive, refused to check ANYTHING to include hr/ blood pressure or even O2 sats. Even after I begged them to at least take any of those over two dozens times in the four hrs they kept us there. At one point my kiddo is shaking uncontrollably, has become extremely pale (normally olive tone unlike male and was more pale than I am) I could tell at that point they had a high fever but was still told “ just give your kid Tylenol and take them home they will be fine!” Very condescending! The ONLY thing they did test for was infection and pregnancy and we were told no infection present, bloodwork was said to be “normal” and while they did actually do a CT scan at this point supposedly looking for kidney stones they actually did a contrast ct scan which was both contraindicated for pediatric patients and even young adults due to a very high risk of allergic reaction to a component in the contrast as well as being contraindicated in use when looking for stones because it washes them out, creating a bright white spot which tells them absolutely nothing about what that stone looks like/ how big it actually is or anything else helpful. They told me again to just take them home they were fine and they “couldn’t be in that much pain it was just a kidney stone”. Thankfully! I didn’t listen to them fully. I did drive the 45 min home and ran inside to get our thermometer and after it came up 105F I called the children’s hospital which is nearly 4 hours away at that point due to the temps outside being 20F / there was ice on the ground and it was snowing! The nurse at children’s was amazing! Stayed on the speakerphone with me the entirety of the drive with an ambulance on standby to head towards us if anything began to happen that I was unable to handle or my child began to crash completely. Thankfully after being told to roll down all four windows (20F outside) and blast the AC the entirety of the drive in an attempt to get my kiddos temp down we finally arrived at the hospital. They were waiting at the front door with a gurney and after taking temp which actually went up to 105.7F they bypassed ER altogether there and we rushed straight into the PICU. That night was terrifying. Heart rate at the moment they began hooking my kid up to all the machines and placing oxygen, retaking blood work, etc etc was 288 bpm which was terrifying because their concerns between the heart rate and fever alone became stroke and brain damage if they were not able to get the temp and hr down quickly. I’ve never in my life seen a blood draw where when they took the blood it looked BLACK due to the amount of red cell death that was occurring. They had pulled all records from the initial hospital prior to our arrival and told us that the idiot doctor at the first hospital was wrong in everything. Not only did my child in fact have a major infection, not just one kidney stone was present instead there were five total with the one causing a blockage which had begun the infection, the blood work was NOT “normal” even at the initial hospital but they read it incorrectly or didn’t care, they also had refused to take basic vitals which would have absolutely shown the kid was sick! Unfortunately, by the time we got to the children’s hospital my child was fighting a severe case of sepsis and they weren’t sure my child would make it through that first night. Even leukocyte counts were up to 16,900 something I can’t remember after the 16,900 part but it was because they then told me 17k is brain death/organ failure and death. It was terrifying. Thankfully my child is a fighter. After five days they finally realized the stone was not going to pass, they were trying to see if it would as they also had to continually fight the sepsis which they really did not want to risk surgery or another dose of radiation with another ct because of the stupidity of the initial doctor doing the contrast ct which my child on top of everything else had a severe allergic reaction to. So they were treating the sepsis with very strong antibiotics that were given over twenty four hours very slowly and after those five days we all agreed that the sepsis was going to continue if we didn’t address the stone and the risks to doing another scan (obviously no contrast) and the risks of surgery were now outweighed by the risks of leaving the main kidney stone that was the immediate threat and making it so the medications were not able to fully rid the infection. So that night kiddo had emergency surgery to fully remove the one stone which ended up being a 3mm stone that was so spiky that along with the inflammation created complications to get that stone unstuck and fully removed. They also were able to better see the size of the other four stones and addressed those with medicine that dissolved them rather than making the kid pass them or attempting to remove them when the one took longer to remove and there were issues with trying to get the kids pain under control in post op thankfully due to the way things are in post op coming out of general my kiddo has no memory of it but it got incredibly stressful and scary at that point as well then suddenly kid became bradycardic where the hr started dropping too low, oxygen levels started lowering again and that night we were extremely concerned. By the next day though this kid was suddenly bounced back and ready to go home and we got to go home later that afternoon where we rush out together a 17th birthday party❤. It was terrifying and we filed complaints against the initial physical at that first hospital. We were told by the teams at children’s they had we taken the advice of the doctor my kid would have died before morning the first night!!! I am still furious because the level of absolute disregard for my child and refusal to even do the basics of his job nearly cost my child their life. I’m glad I stuck with my instincts! I tell everyone if you know that things aren’t right, do not stop until you get answers!
I finally found a doctor who listens to me and will run any test I ask. I’ve cried telling her how much I appreciate her. Blessings to you, and a healthy recovery.
Welcome to the world of the professional patient… there is nothing harder than advocating for yourself and being so frustrated no answers and docs that do nothing. I’m SO glad you put this out there. You are not alone! Sending healing hugs your way!
Professional Patient. Sorry, that this is your " career". You must be mentally and physically exhausted.
It’s insane that patients have to be their own advocate. It’s almost guaranteed that at some point the doctor will ask you if you’re imagining your symptoms.
They generally do this when they encounter cases they can’t figure out / don’t want to figure out.
I went 10 years trying to get pregnant. When I saw my third reproductive endocrinologist, I told her at my second visit what I thought was wrong. She said, no, I'm wrong. After a 3rd unnecessary operation, she said sometime women can't get pregnant and we don't know why. I had to force her to give me one little blood draw form for what I thought I had from the beginning. I did have it. My baby was born 2 months later, and I had another one in two years. I shouldn't have been blown off, but I always am and now my children are going through the same thing. U.S. Doctors don't know a thing about CAH.
My physician husband and I (a pharmacist) really enjoyed your story. We were very disappointed, however, and the seemingly unengaged infectious disease doctor. He really should have admitted that he didn’t know what next steps to take. Huge kudos to you for being your own advocate and getting the help you desperately needed! Many patients are intimidated by their physicians and never question them or seek second opinions. You were clearly not and that is why you got the end result you did. We wish you nothing but the best in the future!
As a Wound care nurse, I'm quite surprised they didn't refer you to one, and why on earth would they think it wouldn't matter and to just leave it open..smh, I'm sorry you've experienced the negative side of healthcare, it's happening too often. Thanks for sharing your experience.
I HAD MRSA ..SO WHAT THEY MEANT IS DONT TRY TO CLOSE THE WOUND WITH STAPLES OR OTHER MEANS..LEAVE IT OPEN IS CORRECT..PLACE THE DISINFECTANT ON IT AND PLACE A COVER ON IT ..THATS WHAT THEY MEANT..
@@leelunk8235that’s not what they meant. How would he close the wound with staples himself?
@@Sarah-ty5ev NOT HIMSELF OBVIOUSLY, SOMEONE DOING IT FOR HIM, STITCHES, STAPLES, LONG BUTTERFLY STITCHES OR EVEN A BANDADE WRAPPED TIGHT, WHEN I HAD MRSA, ONE OF THE HOLES IN THE BACK OF MY THIGH WAS QUARTER SIZE, LADY SAID LEAVE IT OPEN..I KNEW EXACTLY WHAT SHE MEANT, I WORK IN THE MEDICAL FIELD SO I ALREADY KNEW NOT TO TRY TO CLOSE THE WOUND UP, OPEN TO LET THE CRAP DRAIN ON ITS OWN WITH THE ANTIBIOTIC I WAS GIVEN, IT WORKED AND THE HOLE CLOSED ON ITS OWN
Yes it's happening way too often and not just with rare things
I truly believe that “healthcare” is responsible for pain and death, than anything else.
100% you nailed it - NEVER accept “expert” advice when your body is telling you something different. Thanks for your leadership on this and for sharing what you’ve learned! Thanks for your awesome joie de vivre.
What shocks me the most is, that they still treat him with different medications while NO ONE KNOWS what it is. this is horrifying.
Absolutely! 🙏
Our medical system is so broken. Hundreds of thousands of dollars spent over here after I contracted a disease doing volunteer work in Central America. I went from being super healthy to almost dying. Traveled the world to find consult with various doctors. Praying it gets better. Just when I got healthy I got Lyme disease last year hiking the Appalachian trail. 💔 this temple of ours is so fragile and yes we have to be our own advocates.
Oh wow that's awful. I learned Lyme disease was purposely put into ticks in a lab (in the north east) for germ warfare. A huge number were released and now we have a massive Lyme disease issue growing in this country.
All you have to do is get a bunch of carefully done fecal transplants and you will probably be fine. FMT. google it
Yes, we have to be are own advocates. However, what happens when you are so ill, out of money, elderly & so beaten down from trying to get help you can't advocate for yourself. Our HC system is broken because profits come before patients. No one should have to go through this to get help. Someone here responded that if your over 60 they don't care. Sadly I agree.
Look into Rebekah Hiesman--she has a yt channel n healed her Lymes disease.
@Alma-id1lc Look into Rebekah Hiesman--she has a yt channel n healed her Lymes disease.
You're a bigboy, but there's nothing better than a supportive mom by your side during those difficult times! Kudos to your mom. Happy mother's day to her!
As a nurse this was fascinating and I thank you so much for sharing your story. I'm so sorry that you faced so much resistance to getting appropriate care. Usually in my experience Infectious Disease doctors are very proactive about treating rare diseases and connecting patients to appropriate resources, because frankly it's very interesting for to them to encounter such cases. I'm angry on your behalf that your care was so mismanaged and I commend you on advocating to get the care you needed. Best wishes for healing!
I literally just saw a news headline that this has just become endemic to the US, do you have resources to learn how to detect it in patients?
I’m a nurse who has practiced for 37 years and I am appalled at how your initial care was managed. Sadly, it’s incredibly common for patients to endure the gaslighting, blasé attitude of my colleagues. I don’t understand why they do it. Thank you for being vocal, sharing your story and becoming an advocate. Sending you love and prayers.
@@Trump.is.a.nazzii What a coincidence that Fauci was experimenting with infected flies on begal puppies here.
Dude. As a physician I’m glad the NIH exists. Your video tells me everything I hate: telemedicine, PAs examining new patients, “wait patiently philosophy”, etc. I see the pain rattling in your teeth. That’s insane. I’m glad you got this beginning this treatment. AmpB? Is intense medicine. I’m sorry this happened to you.
Great story telling. I wish you all the best.
Why does a PA’s examination fall under your list of things to hate?
MD here too, honestly fuck the american "healthcare" system. It is a scam meant to profit off vulnerable people. Fucking predatory!!!
You're right about PA's. They mean well but they DO NOT KNOW WHAT MD'S KNOW! You cannot substitute a few months of education for the many intensive years that MD's have to go thru.
@@iamgabriel5823 Hmm. It is true education matters but there are plenty of MDs who don't listen to their patients. Medicine is more nuanced. Also, my background is med tech so I knew of this disease but a quick google would have pointed in same direction due to him traveling to place where its prevalent. I am applying for PA school so lol maybe I'm a little biased.
@@Rinsuki I think the biggest takeaway is that here in the US, leishmaniasis is a zebra and that even dermatology and infectious disease doctors (let alone advanced practice practitioners) get used to seeing all sorts of lumps, bumps, and wounds. A quick google of his wounds (in all stages) can pull up anything even knowing there's a history of travel.
Dear One ! The first thing I learned while living in Mexico when I got a serious parasite and for other health problems was this: First, go to the local indigenous healers , as they know the plant remedies for illnesses in their area. They have knowledge from literally thousands of years passed down from their ancestors of master healers. Many or most of These plants and other methods of healing are unknown to western medicine. God bless you & the doctors on your healing journey. 🙏🏽😇
i was almost thinking the same thing. id go right bavk to where i came from and find out if i could. so scary😢
I was thinking the same
thing
Thank you so much I will look in to the holistic dock I have been in search of one
YES!!! The villagers know how to heal this. Their tradition medication, something in their blood that fights against that parasite. That village would have been wiped out if they didn’t know how to kill it. Contact them, go back and see them, if you can.
exactly what i was thinking, those villagers must be immune or have the remedy to treat it.@@klhaugen22
Somehow yt recommended me this..
Oh my gosh.. I’m so sorry for all your pain..
it’s a very good thing that you contacted NIH for this.. just unbelievable.. I really wish you recover asap!! What a scary situation ever.. oh my..
God bless you and your loved ones!! Thanks for sharing this during your terrible pain.. stay strong!!! ❤❤❤
Amazing journey. I work in research on Leishmaniasis. After seeing the first picture, I shouted out, 'Leishmaniasis!' And I was really angry when I saw that the doctors gave you miltefosine, especially guessing that you had L. braziliensis. I'm glad that you received great attention afterward. Don't worry about mucocutaneous leishmaniasis, but know that it is a possibility, and with the correct treatment, you won't have any problems. Sadly Leishmaniasis is considered a neglected disease, so most of doctors have no idea about it. We try to teach about it, but it’s difficult to make understand the students about the importance of knowing this kind of diseases.
It's great that you work in research. My dream job is research. I guessed leshmaniases because I've taken too many parasitology courses. Had a great professor that lived the weird and this was one of the diseases he covered.
@@chesneymigl4538I'm so glad to see that there are people like you interested in research in parasitology. I hope you can pursue your dream in research. Go for it!
I had a horrible skin problem and doctors told me I was just picking or crazy (I have bipolar disorder so it’s hard for me to find doctors that treat me for physical things without them being blinded by my mental health issues). I eventually got a reprieve after 10 years of having secondary staph infections and being afraid to touch or hug my kids bc I was afraid of giving them something. My reprieve came from soaking in a chlorinated pool and spraying my skin everywhere with peroxide and bleach (I Still see bumps coming up and I never got an answer as to what the hell I have), but I have stopped waiting for an answer.
@@shieldmaiden1318 OMG!!! That’s horrible! Did the doctors try to see if you have some micosis infection? Fungal sometimes are not considered, and are very difficult to diagnose. I hope you can find a answer to your dilema.
@@juanjoselauthieryou are genuine person, also your field is very difficult, good luck
Hi Gareth, I had Kala Azar as a kid - essentially visceral Leishmaniasis . Got it in Spain, where its otherwise completely unknown and was not diagnosed correctly. Spent the next 9 months in a hospital being treated for leukemia with no improvement, obviously. Eventually a friend of my grandad, a one-armed former Wehrmacht doctor who had been stationed in Albania during WW2, came to see me. He instantly recognised Kala Azar, prescribed amphotericin and within a month I was right as rain.
Wow :0
There will never be another breed of humans like our WW2 veterans! Everyone please absorb any knowledge you can from the few we still have with us!!!
In the medical field you can't undervalue experience. I hate it when doctors fresh out of med school, young ones, talk to you like your stupid. I know my case better than you do. At least consult with your attending please. This treatment was tried before, it wasn't effective.
Im so sorry💔 Praying you are healthy, safe, well now and that you are cured now✝️🙏❤️
thanks Jules, we prayed a lot but that didn't help. Really, it sometimes felt as though God gave me the disease and a scientist saved me. @@julesoxana
Heartbroken for the pain and fear you have had to face. It’s horrific how dismissive doctors can be.
Also, your mom is a rockstar. What a precious lady. I’m so glad you had her support through those treatments!
Every Doctor denies any parasites . We don't have the right doctors.
Docotors are just money hungry and yet will preach they do it to help lol
Moms are Gold❤
They will always be there when everyone else isn't.....I pray God give mine a long Life
That Telehealth with the doctor just shrugging you off literally made me see red, have had this same experience with doctors before and while not horrifying infectious disease levels, I am scared to finally have a doctor one day pay attention and tell me “oh you were right, there was something wrong all this time and it would have been better to treat it earlier”. So many doctors are egotistical and not listening to their patients and it’s messed up. Glad you’re finally on the right treatment path, my heart broke listening to the fear in your voice 💔❤️🩹
Good public service announcement, #1 thing for the patient is to be your own advocate and don’t stop until you get what you want. Unfortunately the #1 goal of the doctor is to send you home
As a registered nurse, I cannot agree with you more. I really wish healthcare wasn't so fragmented and disconnected to human emotion and actual care. There are some good people though. It's the bad experiences that suck.
Too many of them are all into it for the money. They became doctors just for the great lifestyle. I know a few that are constantly flying to Paris or Bora Bora like places. They are horrible!! We need a system to rate these doctors.
@brandoncarpenter9681 true. Back when I first had Lyme Disease it took me finding a specialist who thought to give me a Lyme test which revealed it, while my local doctor kept telling me I'm fine. Now I know to see multiple doctors if needed to find a right one.
Even to this day the medical industry doesn't seem to take the condition of long term Lyme seriously. Relating to this video- it seems like there's some close mindedness with a lot of 'infectious disease' doctors when it comes to stuff outside the norm.
We are all battling this uncaring care situation, Alzheimer’s Cancer, simple diseases…we are all fighting for some decent care and affordable meds, it’s awful for so many.
Its crazy how you were doing so many other things to make content for us and hiding the pain and what you were going through and we never knew about it!
It was also the best way I knew how to distract myself from all of this crazy Sh*t!!
My brother contracted Leishmaniasis while at a yoga retreat in Costa Rica a few years ago. The final treatment was a series of infusions of a strong medication that required monitoring of his heart. I remember it taking quite a few months to determine what he had contracted and come up with a treatment plan in Canada. He is doing well and had a full recovery. I wish the same for you.
It's good to know if you go back to the country where you got it you can be diagnosed immediately and the treatment will end up being way cheaper or for free, in case of Brazil, I don't know how the health system is in Canada. Good that you all found a solution, even if it was a bit late.
This type of disease is very well known in Brazil. here you would have been more easily diagnosed. But anyway, I wish you a good luck and you recover completely and also that these bad times don't make you forget the incredible moments you certainly experienced on your travels, a hug from Brazil
É oq eu tô pensando, se o cara pega leishmaniose AQUI, pq n vem tratar AQUIII??? Cara, é puro preconceito!!!!
Se tivesse tratado aqui teria terminado muito antes. Gringo é mt sem noção.
Ele não pegou no Brasil, foi em um dos outros países que abarcam a Amazônia
@@rodriggrrr9788it turns out people don't like leaving thier home and travelling between continents for medical care when they don't even know if it will be better
@@laryssatenorio2266 Fodase fia, ele foi tratar em um país que não tem um estado tropical sequer. Tivesse tratado na região tava melhor.
@@rodriggrrr9788 E em que momento eu discordei disso?! Só corrigi seu erro de falar que ele pegou no Brasil. Deixa de ser maluco, seu mal educado.
This happened to my uncle. He went to the Amazon while on his yearly trip to Bolivia and came back with this. Oddly enough, we live in northern San Diego county and none of the doctors could figure out what it was and they kept treating it incorrectly so after a few weeks to months, he ended up flying back to Bolivia, where they figured out what it was, and were able to treat him there.
I keep seeing comments where people suggest you get treated in the country you got sick in. Makes perfect sense and is now something I will always keep in mind.
@@AccidentallyOnPurposeI'm Brazilian and I came to the comments to say that he should've went back, but I'm happy so many people here put it in better words than I would've been capable myself.
I teach parasitology, and one thing we always emphasize to students is the importance of taking any symptoms seriously when a patient has a travel history to an endemic region, even if it was years ago. Many parasitic diseases don't show symptoms for years, making it crucial to consider this possibility. I'm sorry you are going through such a difficult time with this awful disease. I'm glad you were able to receive care and treatment from the NIH. I understand that sometimes doctors may not be able to diagnose diseases like LM, as they may have never encountered other cases before, but I wish they had taken your travel history more seriously. Thank you for sharing your story. Being aware of the diseases present at your travel destination is essential and people should be more careful and aware of the possible risks. One of the main ways to avoid getting LM, as you mentioned is to avoid areas and/or times that sandflies are very active. I hope you get better soon and make a full recovery. I hope to see you post videos with good news soon. 🙏🏻🙏🏻🙏🏻
It's so frustrating to have doctors that won't listen. I am so glad you finally found the right people.
This situation sounds far more like inexperienced doctors than doctors who won’t listen. That one doctor had only ever treated one other patient with a less severe case and LM as a whole is understudied. Don’t jump to conclusions but also don’t be afraid to move on to other options and don’t be afraid to speak up for yourself. Doctors can’t read minds, and both highly skilled and bad doctors exist everywhere.
@@FerociousPancake888the doctor thought he knew everything about LM, and he didn’t put in an effort to seek better treatment for his patient.
Well I question the validity of the video appointment to begin with. The whole point is to track the progress of the disease and wound and if the doctor isn’t willing to view the wound…what is the point of the appointment other than bill the patient while the doctor is on vacation? I mean he clearly said to the doctor that he was in pain and his wounds were worse and the doctor said “…be patient.” Be patient and wait to die as I take $50,000 medication that apparently is not helping me and oh, is making me sterile?!? Oh, ok. You’re right. Good idea doctor “I’ve treated one whole person with this disease before.” Hmmm. On second thought, maybe I’ll make a phone call. (That might have been a bit harsh but it hit a nerve. No offense intended.)
most doctors are unfortunately hacks
@@Codasmom1776 exactly! It is unacceptable for a doctor to make an appointment and refuse to do an exam. Refusing to listen to patients and also dismissing symptoms or concerns of the patient at all. Its just charging them for nothing.
Full disclosure, I had never heard of you before today. This video just popped up on my YT page and I thought I'd check it out bc I myself went through a similarly horrible experience. I've never been outside the US but I took a job in a chicken processing plant in early 2018. I absolutely loved my job until Nov 2019 when I fractured my wrist. At first it was no big deal, I went to the ortho got it set & waited for the all clear to return to work. The break healed easily enough however when they released me to return to work my hand was pretty swollen and red. I was told it was due to the brace that had been on nothing to worry about it would clear up in a few days. That however was not the case. As the weeks passed the skin started to open up turned purple then black. No one could tell me what was wrong. Some drs said staph (wrong) some said klebsiella (wrong) some said auto immune (wrong) some said gangrene (also wrong). I was eventually sent to the best hospital in our state where I spent a week with a team of doctors from every specialist you can imagine trying to figure out exactly what the infection was and how to treat it. That was July 2020. Long story short they never figured out what the infection was and it spread from my left hand to my right. My hands turned black blistered and began drawing significantly. I had open wounds on both hands until June of this year when the last one finally closed. I have 20% function in my left hand 25 in the right with my forefinger permanently drawn over and both hands severely scarred. There were many times throughout this ordeal when the pain was so bad I begged God to let me die. Thankfully he did not. I'm learning to live with the disability, however I still have no answers for what the infection was and I'm terrified that it will come back. I am grateful that you got answers and are recovering so well and I truly hope you are able to have the family you so desire sorry for the long comment it's just most people don't understand what it's like to go through something so horrific and not have any answers. Thank you for sharing
Sorry for what you have gone through. 😢😢😢😢😢
Thank you for sharing. I'm so sorry you had to go through that. 😢
Damn! So sorry for this :( It sounds so terrible and horrifying that there are still diseases we cannot identify and treat the right way. Hopefully you will, too make a full recovery with time!
@tngirl79799 I’m sorry hope you get some answers. Maybe also contacting the CDC and or NIH. I’m sure the Drs at the hospital were great but, it won’t hurt to get an opinion from national institutions.
So sorry to hear. Here's to light being shed on your condition in the future, to some future recovery, and a fulfilling happy life to you.
Gareth, you’ve had such a traumatic journey. Thank you for having the courage to share your story. It’s awesome you had your family, especially your mom, supporting you. You’re an incredibly brave individual!
Thank you very much! I appreciate your support. 🙏
@@GarethLeonard You are such a fighter Gareth, if you get a calling please look into Joe Dispenza work and using your mind to heal.... If sounds so woo, woo but i promise you his work is life changing. If it doesnt reasoante then let it go you have nothing to lose. Take care and all the best from the UK
@@GarethLeonardtry research in Portuguese, Fiocruz website has some information on treatment. Doctors in the Amazon area have knowledge of this disease and how to treat it. The word in Portuguese is Leishmaniose. Para todas as formas de leishmaniose, o tratamento de primeira linha no Brasil se faz por meio do medicamento antimoniato de meglumina (Glucantime). Outras drogas, utilizadas como segunda escolha, são a anfotericina B e a pentamidina. Todas essas drogas têm toxicidade considerável.
Thanks for sharing your journey. As a retired Public Health Care R.N., I want to say that our local Public Health Care clinics were once an invaluable resource for people suffering from contagious disease. I worked Respiratory Disease (a lot of tuberculosis), but the Special Disease Clinic across the hall dealt with all sorts of disease from sexually-transmitted disease, newly-emerging HIV, and leprosy.
It’s a shame our nation does not fund and promote local public healthcare agencies. We are facing such urgent health care challenges. We need to advocate for and fund local public health care services.
Yeah. The covid pandemic made it clear that "public health" doesn't exist in this country. Only capitalism. And I agree!! But even our local public health care services are downplaying the fact that the pandemic is still ongoing, and also the fact that a vaccine-only approach that doesn't emphasize wearing masks in public spaces, free PCR, testing, asymptomatic testing, paid sick leave, etc. is not ever going to end the pandemic.
Your point about being your own advocate is so important!!!
I went through something similar with my late fiance. He just couldn't make himself ask questions of, or challenge, his doctors for better answers. He blamed it on his Army training, and on just being grateful to be alive.
I begged him to let me help, and finally he relented. After that, he never missed an appointment, his questions were answered, and if I didn't think the answer worked - I asked for a better answer. If they didn't have one, I'd keep after them until they found one that worked.
In the end, nothing would've been able to save him. The damage he incurred was just too much for his body. But at least I gave him a better chance.
KEEP PREACHING ABOUT SELF ADVOCACY!! IT SAVES LIVES!
This was a miracle! Your Mom's prayers!! Give God the glory!
I agree 100%...and if you are already too sick or too weak you need someone to fight with you ! If I hadn't my boyfriend insisting for doctors( in the hospital already) to help me when I was in severe pain, unconscious, not eating for over a week, not even able to drink one drop...I would've died....that is for sure.
@@wandavision8567 Oh honey, I know right?! I'm so glad you had someone to advocate for you! It makes a world of difference. Knowing you have someone in your corner, ready to go as many rounds as necessary on your behalf is priceless.
I wish my boyfriend would help advocate for me but he is just as timid as me :/ I hope it won't affect any of our lives, we 100% need to work on our confidence.
Hi! Brazilian medical student here. Fascinating story and it really gives me perspective about the hardships that the US health care system have in recognizing and most of all treating neglected diseases.
Since this disease is somewhat endemic here, the Pan American Health Organization Strategic Fund helps us and other countries in getting the drugs for very cheap. And I mean CHEAP. I was baffled to see the price of Miltefosine (Impavido) in the US. Here, the price is U$3.78 per pill, which is next to nothing compared to your situation. Good thing your insurance covered it. We also have the standard treatment option, which is Meglumine antimoniate, and although somewhat less efective, it is free for everyone that needs it via SUS, including foreigners and travelers.
Anyway, thank you for sharing your journey!
Glad to hear that your treatment worked. People need to realize that having adventures come with great risk. Stay safe.
My heart goes out to you and your amazing mom. You are so brave, and I appreciate you doing this video, it will for sure save lives. May god bless you.
I'm Brazilian, I was super sad to see this nightmare you're going through, I didn't know about this disease despite having lived in the Amazon region, I wish you well, healing and that this whole nightmare becomes the past and you can live your life as before, I wish you a lot of strength and never get discouraged, may God bless you with healing as soon as possible... Hugs brother!!!
Leishmaniose foi descrita inicialmente no Brasil e o nome comum dela é "Ulcera de Baurú" porque foi lá que ela foi inicialmente descrita. A gente aprende sobre essa doença nas aulas de ciências do colégio. Tem tratamento. É restrito mas muito conhecido no Brasil devido á polêmica do tratamento de cães infectados, uma vez que a doença afeta todos os mamíferos. Procure um veterinário e pergunte sobre a doença se quiser informações mais detalhadas mas a referencia no tratamento é o Hospital Emílio Ribas em São Paulo e o tratamento consiste no uso de sais antimoniais, notadamente o antimoniato de N-metil glucamina (Glucantime®).
This disease is endemic in almost the whole Brazilian territory. It's not very common in humans, but dogs are seriously vulnerable of getting infected. Some species of Phlebotomus sandflies can reproduce on the wet soil of a urban garden. Almost everyone with a dog is terrified by this disease where I live.
Thank you for making this video. Difficult to make I'm sure. Our medical system is a disaster for actual health outcomes. It become all about greed and profit. Your point about being your own advocate is spot on. Trust your instinct, get second opinions and push as hard as needed.
It’s free health care can’t denie help at er then no one pays yes our health care has issues
Incredible video. The haphazard care you were given in the beginning and complete lack of empathy let alone a 50k fight for a drug you didn’t need is more grotesque than any wound photo you could show. Respect to you for being so strong and pushing for your answers. Thanks for sharing.
I'm sorry this happened to you I hope you feel better
Thank you very much 🙏
Excellent video. Sums up everything ny daughter as a 18 year old has been going through. She has a very different disease but very serious health conditions have a few things in common, and you mentioned them all (the dangerous toxic medication, the advocating for yourself, the helplessness, the lack of answers and clarity, the extreme physical and mental pressure, the radical change in outlook on life…) All the best to you and a complete recovery!
All the best for your daughter ❤️🙏💙🍀💚☀️
Praying that your daughter has a speedy recovery!
No words can express how infuriated and sorry I felt for you when listening to the doctors call. I know what it is like to be invalidated by so many doctors only to find out 20 years later that I was right, that something was wrong with my body. By then the damage had been done, but it could have been much worse so I thank the heavens to not have had fatal complications. Doctors need to listen to their patients, and give us time to express what WE are feeling and going through. I wish you all the best in your healing process, and thank you for sharing, I will certainly be more alert if/when I travel again.
😢
doctors are humans too, they aren’t super computers that know every minute detail about all the millions of obscure diseases.
What was your disease?
@@TheDigliI was eventually diagnosed with Hyperthyroidism. Unfortunately my heart, eyes and bones have been affected from not having my thyroid treated during my adolescence. Hindsight, I had dozens of Thyroid Storms which could have been fatal, but thankfully I survived them.
The fibromyalgia was another illness I suffered from for many years and doctors could not figure out what was causing me so much pain, and kept doing MRI’s in the area a felt most pain (mid-lower spine) but found nothing. It was not until I visited a chiropractor and an X-ray was done my whole spine did he find damage in my neck and thought it was Fibro. I then took these findings to the NHS (UK) doctors and finally was seen by a Rheumatologist who then confirmed the Chiropractors suspicions. It’s been over a year now and I’m finally able to manage my symptoms enough to where I am able to function better than I did last year, alas, there is no cure but at least I can explain as to why I can’t walk or be as social as I’d like to be.
Lesson from this is to never let any doctor dismiss you when you know something is wrong.
@@LindaFoote-nq9yu ❤
I can't imagine how angry you must be at those previous doctors. I hope they see this! I'm glad you kept fighting to get answers, not just because it helped you get the care you needed, but because your story is going to help a lot of people.
Gareth, I am so sorry this happened to you. You are such a positive influence! I just know I am not alone in saying I am thinking positive thoughts towards your health and success in beating this crazy disease! Do not give up, stay strong even when can’t. Sounds crazy but when you have been through very tough times, “ even when you can’t” is a hard place be. Just grasp at any positive things no matter how small, they will grow until the light comes again…
I KNOW HOW YOU FEEL! I went through something similar. I was so fed up with the medical community,I went to the source: the staff that actually wrote the book on it. I spent six months in and out of hospitals, four different antibiotics at the same time, IVs, PICC lines, wound vacs, you name it. It’s amazing when you think the medical community understands what is going on but really has little clue. The medical community was unable to win the battle after a year so I ended up losing my leg below the knee. Best decision I made after living through that hell. Wish you the best in this.
That is shocking!!!! You DID NOT deserve any of that!!!! All I can wish for right now is that you are comfortable and healthy
@caffeinated24x7 - i know how you felt about the amputation being the best decision, though my leg infections were not LM.
I am sorry you are dealing with this disease. I am from Peru, and I went to school with a lot of kids with this disease. All of them were cure. They only had some scars on their faces, but they were happy kids running around after being cured. This was in the 80s. I am sure now there are better medications for this disease. Sadly no many people know about it. I hope you recover soon. There is cure!! I have seen in with my own eyes...😊
I feel the Medicine is in the Jungle, there are medicine men that have the Wisdom and Knowledge on how to treat this .
Should have gone to local doctors, not to the US gringo ones.
@@lagringa7518 True, but he is doing well now.
How come the people living there seem to be less afflicted by the diseases?
@@user-op8fg3ny3jIMMUNE TO IT...THATS THEIR PLAYGROUND
I studied Parasitology back in 1975. I remember most of them included Tropical Leishmaniasis. I had tears in my eyes watching your medical journey. I hope all works in your favor!! God bless you...😊
I had a rare form of testicular cancer that went through multiple misdiagnosis due to its location in my chest. These vids do help people because that anxiety when you don’t know what you have is unbearable
How did you finally get it diagnosed?
Your in my prayers today. I’m so sorry you’re going through this.
You’re intelligent and was not just giving over your trust to that one doctor . Too many people just accept and comply.
It was good to see you smile after the 7th bag.
Don’t forget to reach out to the Amazonian tribe -they may know the cure.
Good idea!
I absolutely LOVED wound care whilst nursing.
The mental health issues are something forgotten about.
Brilliantly explained and i am grateful for you being able to update us all.
Bright blessing to your mum an family.😊
Thanks for sharing that ❤
I don't know what to say, except you are the bravest & strongest person I know of. May you survive this ordeal and heal completely.
And God bless your mother.
You are so blessed that it happened on your legs. Also you had your mother. My mother is deceased and I wouldn't know what to do. And I believe you are very smart in getting a hold of the NIH in DC . They really changed everything for you. I wish you the best. You seem like a really awesome person. 💖
Hoping Gareth's battle with Leishmaniasis will end in a positive way soon. It always amazes me how many things can go wrong with one's body; it's amazing more people are walking around seriously ill all the time. It's also amazing that physicians are unable to be responsive with adequate treatment.
I commend you for being a fighter for your health! I am a Registered Nurse. I have seen patients just blindly accept what the doctor says. I have administered Amphotericin B, and the patient usually does pretty well. But, you had some unfortunate complications. Finally, you are so lucky to have had your Mom there to help you out. Mom's are sometimes left out. Anyway, stay healthy, and do well!!
As somebody with a chronic illness, I feel your struggle to be heard and to be listened to by medical professionals. You had a long battle to get what you needed. I know a lot of others who suffer from my disease who have given up being heard or asking for what they need, because over the years and years they get exhausted, especially when a disease has no cure or treatment. If you have a loved one who is battling - help them advocate, help them find answers, help them fight. The medical system has a way of making us all feel small and stupid and insignificant. It can make well meaning doctors and nurses powerless to help, fatigued, overworked. We all need to help each other find resources and, when we do find something, we need to spread that knowledge like YOU are doing, Gareth, by making this video. Thank you.
Fellow San Diegan here... my fiance and I have been watching your videos on And off randomly throughout the years. I just watched your video, and I'm in tears. I'm so happy that you're spreading awareness about this horrible rare disease you are unfortunate to catch... I'm also as awful as this might sound as I never wish anyone to get anything like this but am very very grateful that of all the people in the world that got it, you were about to document and share with us your difficult journey as I'm certain you'll have inevitably saved the lives of countless other humans out there that will no doubt be afflicted by this in the present and future. Thank you for what you do. Sending you virtual hugs and good vibes, and NOW after all these years watching your videos, I'm now a subscriber, I'm sorry it took this long. Thank you thank you thank you. Now I'm looking forward to you covering more good eats across our beautiful city 💔💝💖❤
You are so right that we are our own best advocate! So glad you found NIH and they were able to help you! Sending thoughts and prayers for continued healing! Glad you included precautions that can help prevent things like this. I’m sure your story will help others!!
Thank you for sharing this dreadful experience and raising awareness. I am from Africa and ..... getting into "fresh" water, be it a river or a stream, etc..... is something a majority of us just don't do.
I’m so grateful that you have come this far. Thank God for your self advocacy.
I grew up in the Republic of Panama and those tropical diseases were always on the backs of our minds. I am so glad you fought for yourself and got the treatment you needed.
So was this man just really unlucky then? All these people swimming in the same water, it must be a common problem in some regions then? Jungle is scary man, where I grew up it’s cold and snowy for a large part of the year…. Only thing to fear there is moose and bear.
@@tiko4621 It's not uncommon, but people are diagnosed and treated immediately. They took to long in his case and the suffering only gets worse every day you delay the treatment.
I so much appreciate what you have gone through and how you took a stand in your medical treatment. I'm 79 years old living in assisted living, l don't have a lot of computor knowledge as well as standing up for myself. You are a smart man and You found a way to deal with people who just can't get involved enough to be tied down, so they give you a placebo and make you feel foolish for not treating them like God.
Keep up the good work and welcome even us old fogeys.
I loved listening to your story. As a medical professional, my first intuition was to seek help to the region where the infection was acquired as it's endemic in that region. Experts would have been well aware of your condition. Western medicine is different and unfamiliar unfortunately. I'm glad though that you got your answers.
I don't understand that 2 kind of doctors didn't make the connection with the trip. Here you would send to the tropical institution.
@@Kv-nb1gm it's always an advantage if you know a family or friend who is in the medical field. They'll direct you straight to the experts. Western medicine still has a lot to learn about tropical medicine. Thank God we have the NIH and CDC.
I am an electrical engineer, we don’t get to make dumb excuses like that’s in our field. The problem is with the AMA and the caliber of students who get into medicine, need more analytical minds. Not English or physiology majors into medicine.
The medical grade honey derived from the Manuka vegetation, found in New Zealand & Australia, has been found to have therapeutic benefits with staph skin infections.
In addition, the more potent Jarrah honey is even better…but is more difficult to obtain.
I have a small jar of Manuks but never heard of the other.
So sorry you went through this. I got sick at 14 and was met with similar dismissive responses, indifference, and even disbelief. I had to learn to be my own advocate and be the squeaky wheel. I finally got a diagnosis at the age of 21 yet still have to fight tooth and nail for every medication, insurance coverage, appointment and therapy. I’m 31 now and I still have to fight for help. It’s exhausting. I’m just grateful I have parents that have scooped me up and dragged me along when I can’t do it myself. Not everyone has that.
Isn't that great in supposed to be the most free country in the world usa 😂, you would have had everything free here in the uk , with the best tropical medicine and medical health for tropical disease in the world.
@@FaceFcukwhat is the point of your comment? 🤔 ..... "hi, I'm going to randomly talk about something completely irrelevant to what you said, but I get to make myself feel like I'm better than you in some way" 🙃🤦♀️
Good for you for not giving up! I'm curious what made you sick if you don't mind sharing?
@@alexpeters7987watch the video it explains in great detail.
@@alexpeters7987People outside the US LOVE to bring up our flaws as a way to make themselves feel better in their “flawless” country. When you strip it all back, they are literally just sneering and “showing off” to HUMANS who are in need of a better health system. That being said, these people think if we don’t pay up we won’t get treated. 😂 There are many programs available for free or affordable healthcare in the US and when all else fails you STILL get treated. You rarely see an American in the comments being that way with any other country. Not only is it annoying but it hilariously brings their internalized inferiority complex to light. I said what I said.
I finally found someone who has the same parisite. I know exactly what your going through. It took over three years to over it. Good luck to you and don't be discouraged. You will get better dude. Keep the faith. Peace on the path.
Here in Brazil, the standard treatment for leishmaniasis is Meglumine Antimoniate combined with Pentoxifylline.
If the disease progresses to the visceral type, then Meglumine Antimoniate is replaced by Amphotericin B, which is also combined with Pentoxifylline for optimal effect.
The wounds are frequently debrided and then receive an emulsion of Paromomycin 5%. Once the wound absorbs the emulsion, it's dressed with water solution of Potassium Permanganate 0.02% (it helps with cicatrization). Some doctors also administer IL-12 (it optimizes the topic effect of Paromomycin).
I hope they gave you pain meds
So glad you were able to go to NIH 🙏🏽
I admire the way you fought for yourself and had to find answers on your own. That’s the best lesson from your story. Thank you for sharing.
As a hypochondriac this was terrifying to watch 😭
holy shit glad you are okay
I'm not a hypochondriac and *I* found that to be awful to watch. How did we not even know the way to treat that? It's not a NEW disease!
@@EShirako thats because our doctors are trained by big pharma, they dont know anything about old cures we used to have before the rockerfeller and rothchild purchased the medical field back in the late 1800's and early 1900's all thanks to the flexner report, it completely changed how we go on with medicine, from holistic to petrol based and look at the mess were in. We cant even take care of a problem that was well known for hundred of years and was cured by anti parasitic cures. Parasites are the number 1 problem with our health and no doctor will ever venture that subject because they dont know nothing outside their pre constructed education aka indoctrination.
Wow! I cant believe I found this... My 19 year Daughter has just been diagnosed with leishmaniasis braziliensis here in Australia ( after contracting it in the Amazon months ago) Such a worrying time waiting for diagnosis with the confusing and sometimes contradictory information online!
She just started miltefosine this week as her team thought this was the best treatment to start with for braziliensis.
I am so grateful for the treatment she is receiving here in Australia from specialist microbiologists / Infectious Disease doctors who have spent long appointments explaining everything in detail while remaining reassuring they had a few options available. She has been seen many times at the hospital and is being closely monitored. She has had blood tests , biopsies , ultrasounds, medications, check ups and check in phone calls etc all of which is free here due to Medicare. Only cost so far was $30 for the Miltefosine which they had to have flown in. Thank you for this video! I can share it with family and friends as it is difficult to explain something so unheard of here.
I was just about to send this video to you! Gareth and the girls would have been in the Amazon at the same time.
Could active Manuka honey help?? My ICU nurse friend takes it to treat ulcerous sores in under developed places but I don't know how Leishmaniasis will react, just that it's generally very good for ulcerated wounds
No harm in trying manuka honey
I hope your daughter has a speedy recovery. Having something wrong with you or ur child is scary AF. I had to ride in an ambulance this year with my son who just turned 5 and I never want to do that ever again it was the scariest thing. We are trying to get a second breathing Dr bc he's on a lot of steroids. But having something very rare and trying to get adequate medical care has to be hard.....this man could have died if he didn't take things in his own hands. This medical gaslighting and just shrugging ppl off has to stop. But our ( American )whole medical system is fucked. Which really sucks. Hopefully it changes.
@@WeldingQueen Yes nothing as stressful as a sick child and ambulance rides are traumatic! We just love our babies ( mine now now teenagers ) so much. Good luck with your son
I am so glad that you highlighted the difficulty of dealing with a medical system where doctors think they are god, entitled and know so much more than you. The phone call that you had with the infectious disease "specialist" demonstrated perfectly the fact that, even though doctors can hear, they do not listen. I am a veterinary neurologist and I have dealt with this many times with my son and my ex-wife (still best friends). I have learned that the ones that listen and do not talk over you, know the most and are the ones to trust. Thank you!!!
I can ensure you that most doctors do not think they are god. Doctors save lives every single day I don’t understand why this whole comment section is shitting all over them, they dedicate their entire life to their career (12+ years of schooling sometimes) and hundreds of thousands of dollars, TO HELP PEOPLE.
@@UrbanMattsUS doctors have been shown to have higher rates of neglect towards female patients’ pain, even more so for black female patients. If you have a chronic illness or anything unusual, getting the help you need can take years to even be diagnosed. I have personally experienced this many times and I know it’s not uncommon at all. The average time it takes to get an endometriosis diagnosis is 7 years. That’s not for lack of trying. It’s because doctors refuse to LISTEN.
@@virtualgambit577 it’s more of a problem with the healthcare system than anything, there’s a shortage of doctors and the system is set up to get patients in and out fast. Doctors have limited time to deep dive on your symptoms and they see hundreds of health issues weekly that may present similarly. Whenever I have a health issue I will always do many hours of research, self diagnose, and present my conclusion to my family doctor and any specialist I can see. Most people won’t take charge of their health and expect a 10 minute doctor visit to fix a problem that has been accumulating for years, and then blame the doctor when it can’t get fixed or solved that day.
@@virtualgambit577 it gets deep though because the system is also in a way set up to produce some of the know it all doctors who may be negligent because good empathetic people who can listen and could become great doctors will get edged out in admissions by the straight A+ students who have never worked, have no people skills (slightly autistic), have no empathy etc. because they are “better candidates” aka they did better on standardized tests in undergrad that have no relation to medicine.
@@UrbanMattsReally, their sole reason they seek this profession is to help people?? It's not because of family pressure, status, money, etc?
I have run into many doctors with a God-complex, total out of touch dickheads, kinda of like that one on the video call with this subject of this video. I have also ran into many that are humble and genuinely caring.
Just found this video after studying L. braziliensis (weeping lesions). Didn't have any idea that this disease was so neglected 😢. I hope people with a lot of money will fund the research for this disease for medical advancement and healthcare of the patients. Thank you for sharing your experience! Praying for your fast & complete recovery!
So glad you found that support group! I was diagnosed two years ago with a very rare autoimmune disease (about 1 in a million) and finding a small support group on FB of people with it from all over the world was extremely helpful and comforting. You are 100% right about self advocacy as well. Hope things keep looking up for you!
what is the rare autoimmune disease do you have? my cousin is battling an autoimmune disease but doctors cant determine what it is.
After 12 years of extended hospital visits and specialists, I finally found out I have a very rare autoimmune disorder, too. I know that helplessness when doctors don't know and aren't listening. I'm happy you got your diagnosis and wish you good health.
The second I heard you had staph infection really scared me because my mom fractured her femur in three places and got botched surgery where the metal was too big for the leg which caused the staph infection, she had to have her entire femur bone drilled out and have antibiotic beads put inside in order to slow it down the infection, she managed to live with it for 10 years but died on July 26th 2020 12:06 A.M. it's amazing to think someone like me who forgets dates and times all the time will always have that day and hour forever imprinted inside my brain. Hopefully everything is well now and I hope you never have to suffer through crap like this again.
Bestie I’m so sorry u had to go through that ❤
No pain relief
😮e gosins so sorry for the loss of your mom. Hope you sued the pants off the doc that screwed up her leg. Some people that fancy themselves as doctors and nurses should be flipping burgers instead.
SO SORRY SWEETIE 😞 LOST MY DAUGHTER TO COVID ON 9-11-21 GIVES 9-11 TO MY FAMILY.
MY CONDOLECES AGAIN. 😢🎉❤
this sounds so horrible...I hope your mom did not suffer too much. :(
But yeah, I can totally relate to you mentioning not being good with dates but having those numbers imprnted in your brain. Got them too.
Gareth~ I myself am a retired nurse and wanted to ask you if anyone offered you some therapy to help you cope with your diagnosis, prognosis, and recovery? Spiritual care? Nutritional care? These things should all be in your care plan. These are all crucial for healing. I give your Mom praise (Parental Love) for walking with you on this journey and holding your hand to combat this disease. Maybe with your platform, you can become a driving force and advocate for doctors to know about International diseases and how to treat them through your experience with this one. With many more people now more than ever traveling all over the world, I am sure we will see more infections/diseases in the future. I am praying, and sending healing vibes for a complete recovery and stay strong. ❤
I am so sorry for what you’re going through. This is terrible and evidently so painful. I am pleased to see that you have the support of your family. You are very courageous and positive. You are a warrior and you will beat this. Take care friend.
In my opinion, it’s a miracle you went that long without literally dying. Thank God.
I agree - it’s a bloody wonder he didn’t die from sepsis. Always ALWAYS get a 2nd opinion ALWAYS!
I'm a Peds RN. We called Amphotericin B Amphoterrible. You are so right about being the only person who can advocate the best for you is you! Stay courageous and be blessed. Thank you for sharing. I guarantee someone gained knowledge on what to do for any health issues that they do not have an answer for themselves!❤
I'm a pharmacist and we used to call it that as well. But in the end, this guy should not have had to suffer this long and this much. The benefits far outweigh the POSSIBLE kidney damage which can be monitored. This fear of what could be is not acceptable when it comes to patient care and long-term sequelae. I have a friend at Baylor who did his PhD on Leishmania. If Gareth still has problems, maybe a conversation with him might be helpful.
Gareth, tears have streamed down my face watching your entire video! In the past year I've had a mystery illness that started with an unknown flesh eating virus that traveled up my left arm (I also live in Southern California btw, but have not traveled out of the country.) I've seen multiple specialists and none knew what it was. It has come with a plethora of other intensily painful symptoms that feels like an infected tooth abcess nerve pain in the entire left side of my body! The good news is the original skin legions have finally healed, but recently new small ones appeared and the pain is getting worse, the most being a feeling of attack in my left side of my spine wrapped around my left abdomen which feels internal. I've had countless bloodwork, CT scans, MRI's, Ultrasounds, etc. I just long for ANSWERS! I really empathize and relate with the medical fears of not knowing what to expect. I am praying for you to be fully healed of this horrific disease, and if you pray (or anyone here), please pray for me to find answers too so I can be healed and be out of pain and hopefully live a normal life again at some point. 🙏❤️
You need to reinforced your immune system,do some inner cleanse of your body,eat raw fruit and organic veegiee broth . Also look for Yuen healing system and Reiki. Blessings
fruit can make some autoimmune things worse if thats what it is. be very careful what u eat. i hope u find answers!
I will pray for you.❤🙏🏻
May the Lord give the doctors wisdom to help both of you. I pray for peace, rest and total healing for your bodies. May you know that He is your healer.🙏
After watching this video, have you considered contacting the NIH? If you’ve been diagnosed with an unkown or unspecific flesh eating virus or bacteria, but it hasn’t responded to the treatments you’ve been offered, that sounds like something they’d be interested in. Flesh eating anything is no joke, and, while I’m not a doctor (I’m a professional patient of almost 40 years so I’ve picked up ALOT), I can’t help but wonder if you’ve been misdiagnosed, as so many of us with complicated symptoms are. I only say this because flesh eating bacteria isn’t commonly survivable if left untreated, and it doesn’t sound like you’ve recieved the appropriate treatment. As someone that was born with a chronic health condition, and, in recent years, has been heavily mistreated by the medical establishment as well as by inadequate doctors and doctors that simply don’t care, I truly know how frustrating and demoralizing it can be to go through this, and I’m truly so sorry that you’ve also been forced to fight for answers. Feeling that way can make it so hard to find the strength and motivation to continue to fight and advocate for yourself. But know this… you are strong and capable and you’ve got this! I’ll say a prayer for healing and that you get the answers that you need and deserve. God Bless.
I am very sorry for all the suffering you have gone through and continue to go through. You, whether or not consciously aware, the doctors and the medical field have gaslit you so badly. Just remember you are the one who is in your body and you know how you feel.............am very glad you have in the end found knowledgeable people. Sending peace, love, and light to you.
I can't even imagine what you've been through. I thought I had bad when I was diagnosed with cancer.... at least they new what I had. I'm very happy for your recovery and that you stuck to your guns and kept looking for answers. Best luck to you, keeping you in our prayers. Thank you for sharing your story
Prayers for you and all the Best 💙💙💙💙💙🙏🙏🙏🙏🙏❤️❤️❤️❤️❤️
I wish you become totaly healthy again 🙏💙❤️ All the best for you
Very informative and honest video. Its good that you recorded throughout your ordeal and now help many many others. Wishing you a speedy recovery.❤❤❤❤❤❤
It's unbelieveable how such a small thing like an insect bite can almost kill or traumatically disfigure you. Nature, you scary..! - Wishing you all the best, Greetings from Germany!
Wow, this video is eye opening. I’m really glad you’re on the mend! I’m a digital nomad and I’ve come to the realization that the American healthcare system is broken. I receive better health care in other countries and I happily pay out of pocket because it’s actually affordable and the overseas doctors care about your overall health. Best wishes to you on a speedy recovery! ❤️
I almost cried with you when you got choked up. I wish for you be healthy again. I pray that you don't get any lesions at all ever again.
You are completely right about advocating for yourself...I've had my share of experiences with bad doctors.
Again, I wish you the best!
Thank you for sharing your harrowing experience.
Good on you for not just sitting there and taking what the first doctor told you. Sadly, these days no matter what condition you have you generally have to get so many opinions and the hardest thing is finding the person who can really help and knows their stuff. You have to be your own manager. Which is hard when you feel bad, in pain and don’t have the energy. Sending hugs.