I have lyme disease...and was misdiagnosed for 9 years
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- เผยแพร่เมื่อ 4 พ.ค. 2020
- Recently, I was diagnosed with chronic lyme disease and bartonella. Believe it or not, I tested positive for several tick-borne illnesses 9 YEARS ago, but was not ever treated because I never recalled a bite or a "bulls-eye rash".
Thankfully, we were able to see a top lyme specialist this past week, and I am just now beginning lyme disease treatment with oral antibiotics. Thank you for all your encouragement! God is good!
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Chronic lyme disease is often missed because (unfortunately) most doctors are not knowledgable about diagnosing and treating it. Most patients never recall a tick bite or rash often associated with the condition.
#lymedisease #ehlersdanlossyndrome
Always sorry to hear someone else's Lyme story. Lyme illiteracy among US doctors is inexcusable. I've been in treatment for 8+ years for lyme/babesia...it is a tough disease....but we are tougher!!
I've been sick for 5-6 years, hospitalized three times in three years with odd symptoms like swollen optic nerve making me near blind in that eye/swollen painful lymp nodes under my arms/swollen left knee making my walking slow and difficult, .my kidneys running slow.
Severe pain in both thumbs and wrists/childhood asthma that came back with a vengence. I Wake up feeling tired. I can't think as fast. Headaches a few times per week. These things come and go..
They told me that I dont have MS but instead I have some unknown unspecified autoimmune disorder. I was telling my neighbor who is the nurse about all my symptoms recently and she told me have you thought about Lyme disease? I didn't even really know what Lyme disease did to people. Now I can go in next week when I have my doctor's appointment and ask about it. Maybe getting tested.
What has been some of the symptoms that y'all have?
So happy for you for finding answers! It’s a shame so many doctors are not informed. Praying for your recovery!
Thank you so much!
One of my good friends was recently diagnosed with Lyme disease and POTS just this week. For years she has had symptoms but every doctor she went to didn’t believe that she was sick and that she was just making it up. She was called crazy over and over but she never gave up. Your videos help people so much! Thank you for all that you do, spreading awareness about these debilitating illnesses. 💜💜
Thank you so much for your sweet message, Lucie! I'm sorry to hear your friend struggling to get diagnosed, I wish it wasn't that way for anyone. I hope she can get the help/treatment she needs now that she has an answer!
A lot of crackpot docs in US these days. Many have no idea what they are or are lazy, or are just in it for the $. Some are real psychopaths and will lie to patients.
Hi Rachael sorry to hear they missed your Lyme diagnosis for so many years. I was also diagnosed with Lyme, Babesia, and another coinfection 6 years ago. I was told a year ago that I have Mast Cell Activation Syndrome and I'm waiting to get genetically tested for EDS but they suspect I have it as well. We think I have had the MCAS my whole life. You may already know that these conditions tend to run together EDS, MCAS and POTS but if you end up needing iodine contrast or any type of contrast I wanted to warn you. I wish someone had warned me. When they gave me a cat scan with iodine contrast it put my heart out of rhythm instantly and then I went into anaphylaxis and I lost all my foods except for two that day. I still have to take Benadryl every day in order to even eat those same two foods. I have been living on 2 foods now for over two years. That is how I found out I had MCAS. If I had just taken some IV Benadryl and Pepcid and maybe a steroid before the test I might still be eating at least 40 foods today. You might never have an issue with contrast but I wanted to at least let you know that when you have Lyme combined with other conditions things get so tricky. Praying that your treatment goes well and that you are finally on a path to healing. I am happy to help in any way that I can with Lyme questions. I have survived 6 years now on liquids!! Isn't God good? The Lord is not finished writing my story!! Have a blessed evening and take care. 💗💗
Thank you so much for your message, Sherri! I'm sorry to hear you've been struggling so much over the years with these conditions. It's a tough road, but you're right, God is always good! Rooting for you!
Forget the medical BS Whenever they don´t understand what is going on, they come up with a new name for it ie some syndrome.
praying so so so much for you through this rach 💚
Thank you so much sweet ash 💚
Thank you so so so much for sharing your story and using your voice. I was just diagnosed with chronic lyme and i have a very similar story. I've had this for at least 6 years and it seems very scary to catch it so long since i got it but this really gave me hope and I just really wanted to thank you for sharing your vulnerability with us 💚
Thank you for posting this. My psychiatrist actually suggested this to me and I’m in shock. I don’t know if I have it or not yet but the possibility and research I’m just wow
I’m so happy that you have an answer. I pray for your next steps 🙏🏻
Thank you so much Lauren!!
I understand beautiful girl. Its a grieving process its so difficult emotionally. Please stay strong you will get there im so sorry that it took 9 years. 🥺
Your in my prayers, I wish you complete recovery ❤️
Thank you so much! ❤️
I'm so happy you got answers, even though it's not what you wanted. Here's to the future! You got this💪
Thank you so much!
Wonderful video! So grateful for you, your faith and the hope for better tomorrows! xo
Thank you momma 🙏🏻💚
I love you so much!! We can do hard things and I'm cheering for you!
We love YOU!
you are so strong!
Oh WoW! This makes so much sense. I can't imagine how overwhelming this must feel...information is power. I know you and your family can do this. Sending love!
Thank you so much
This is so spot on , everything you said, The confusion and frustration of doctors , The thought that if it had been caught sooner, I resonate with this so very much, Hope you have found a treatment that works for you ❤️
Thank you so much. Wishing you the best as well. ❤️
God bless you dear one and I hope for a full recovery and a joyous life for you! Prayers!
Thank you so much! I am doing much better now. Brain retraining has been the most helpful thing for me in healing my lyme disease. ❤️️
I’m so so sorry. I know the struggles with having faith in doctors and feeling let down and misheard. I hope that this is the answer you’re looking for. I have a good feeling about this for you ❤️ hope you’re okay xx
Thank you sweet Susie! ❤️Sending lots of hugs your way! xx
I was born with lyme. You WILL get better. Praying for you❤️. Never stop fighting.
Love your video, I am going to be getting checked for chronic lime to because I think it might explain some of my chronic illnesses, I will keep you in my prayers sweetie
Thank you Shannon! Good luck finding answers!
Thoughts and prayers for successful treatment!
Thank you Josh!
I got a neck injury last year…just got diagnosed with Lyme disease and co-infections. The last year has been a nightmare ride. Going to EDS evaluation at Mayo in a few months.
I empathize w/ you greatly.
My collagen is going fast…
I’m so happy that the ambiguity is gone. We will keep praying! We love you.
Thanks Uncle Brent!! Love you too!
My story is really similar..as many other people I’ve seen online.
I would love to make a documentary one day to spread awareness about this. 💜
You’ll be ok, keep fighting
Best of luck to you on this new treatment path! I hope that this new diagnosis and the management of it makes your life easier. ❤️
Thank you so much Tahlia! Hope you're hanging in there ❤️
Rachael Elizabeth it’s been really rough and the weather hasn’t been helping (it’s a big trigger for me). I had to quit my job as a nurse and I can’t get my symptoms under control. I’m supposed to see Abdallah soon to get a referral to an allergist to help with the MCAS.
You go girl! And yes we can do hard things!
❤️
Having experienced some of the symptoms of Lyme disease over the past 4 weeks Im sorry that you've had to endure this pain all these years; glad you are hopefully getting the treatment you need now. I was just lucky to have a doctor give a lyme disease test and prescribe doxycycline early on when I tested positive.
Thank you for sharing. I hope you are able to reach remission with your treatment!!
I am in prayer right now for you! My little girl the other day got a bad tick bite. No rash and docs say no need to test because lyme is not around here but I have a feeling I should push for some testing to get done!
Thank you so much! Yikes, I'm sorry to hear about your daughter. I'm sure it couldn't hurt to get some testing done ❤️Praying that everything will be okay!
Thank you for the prayers means lots! Really excited for you guys to grow a garden one day. So much fun!
Keep fightimg. Lyme is brutal but there is hope
Dealing with it now
Thank you Donald! Wishing you the best with it!
Oh wow this is so similar to my story. Thank you so much for sharing! I have been sick for years, and I kept testing positive for bartonella, but my doctors always thought it was nothing. I was diagnosed with EDS and comorbities, but my geneticist thought it was odd that I had been so healthy all throughout my childhood. Earlier this year, after I kept getting worse and worse, I finally went to see a lyme specialist, and I was formally diagnosed with bartonella as well as lyme. I just started my treatment as well. Best of luck with your treatment! I am sending many well wishes! Thank you again for sharing!
That does sound very similar, Sage! I'm sorry to hear you've been struggling so much as well. Wishing you the best with your new lyme treatments, I hope it helps you!!
I can help you.
Thank you for this… I’m searching for my daughter who has had debilitating symptoms for 2+ years.
Thanks so much for sharing this Rachael, I hope your treatment is going well, I'm going to watch your other videos to see how things are going. How did the doctors go about diagnosing you with Lyme? Do you know the tests that were done, and which ones may have showed negative before? I'm suspicious I have Lyme and I feel like I'm having a hard time getting the right tests done.
Igenex does accurate test,out of pocket however
Glad you have an answer. But keep your chin up. I have many health problems and have been in pain and tired all the time. But have a 8 year old grandson to deal with. My husband and God help so much. Your in our prayers. Xoxoxoxo from wanganui, New Zealand.
Thank you so much Tania. Wishing the best for you!
Glad you found another piece of the puzzle! AS a fellow EDSer and Lymie, I can't stress how important detox is especially with any MTHFR mutations or just adrenal insufficiency as you've mentioned before! Wishing you a herx free start to your treatment:)
Yes just detoxification which she can do by her self not spend a ton of many on this quack specialists that can even poisen her more with antibiotics
To clarify I am not saying don't treat, because treatment is essential. I'm saying that detoxing before, during, and after treatment is crucial and any good lyme doc will highlight this and make it part of a treatment protocol. Also, in response to the reply to my comment; referring to lyme docs as "quack specialists" is potentially pretty harmful and very judgmental imo. It's hard enough to get the right testing and find these doctors who are aware of what lyme can cause long term.
Antibiotics saved my life. Had I not been dx and treated aggressively for late stage lyme I probably wouldn't be here today.
also wanna add, after reading others comments, that obvs everyone has their experience and opinion and story and thats totally valid. A lot of EDS patients seem to either eventually get a lyme dx or have had one prior to the EDS dx. There may or may not be some connection between the two and only time will tell. But, as someone with both I can certainly say that although lyme treatment helped *some* symptoms, it didn't "cure" me. At the time I got my lyme dx I had been very sick for 5 years. I thought that was it, I'd get treatment, and be better. 6 years later and I am still in and out of lyme treatment (have done various forms of abx, herbals, detox protocols, homeopathies etc.) and although my lyme is pretty much in remission, the damage it caused and the fact that I have EDS has made it so I am still very very sick. It drastically improved and/or eliminated a lot of neuropathic pain, insomnia, night sweats, seizure like episodes, TIA's, heart issues etc. but it didn't address everything. Additionally, some abx can further weaken or destroy connective tissue (such as cipro) and being aware of that seems really important when treating lyme when you have a known comorbidity like EDS.
I am so grateful to have had access to the treatments I did, but it's now a "whats EDS and whats Lyme" game of symptoms...and because there's so much overlap that can quickly get challenging, especially among the specialists.
Thank you so much! I will definitely remember that. And I definitely agree that everyones story is going to be different. And what works for one person may not work at all for another. I definitely don't expect to be cured, but have hope for improvement with treatment! And I hope that the possible connections between lyme/eds and other connective tissue disorders is researched more, because I think there is so much that they don't know. I'm sorry to hear you're still so sick! Wishing you the best!
I can't even ground. CNt detox at going to try something really gentle like a spray zeolite my son on the spectrum has taken since he was 3.
I'm currently can't walk just from grounding have pots symptoms vertigo so much. I know I'll find an answer. Thnx for this video think I have lymes and my husband and doctor thinks so. Along with adrenal insufficient...
So sorry you went so long undiagnosed :( I thankfully had a bullseye rash, took antibiotics but it wasn't for long enough and now I'm still having problems 2 years later. So thankfully I know what it is, but I know how much it sucks. I have a whole video describing my health journey on my channel. Sending hugs and healing energy!!
I'll have to check out your video, Clare! Good luck with your journey
I've had Lyme disease for 38 years. It took 27 years to be properly diagnosed. Lyme attacked my jaw joints and I've had 3 major jaw surgeries. One was a complete jaw joint and mandible replacement. I still have terrible symptoms. I was bitten by a tick in 1986 and had the bull's eye rash. I am in late stage Lyme.
It is absolutely sickening to me that this brave girl was told that because she didn't have a bull's eye, even though she had positive tests for lyme and co- infections - that she did not have lyme and was therefore never treated for 9 years! 30% or less of people get a bullseye rash. Education, especially to physicians, is most important! also to the lay public so they know to get prompt treatment - if they know they were bit - which most of the time they don't because you can't feel the bite. I have struggled with this and its co-infections for decades and there's no end in sight. It's extremely overwhelming, frustrating, tiring, and draining financially and emotionally, so I can relate. My best to you for a successful treatment protocol 🙏
I am in the same boat. I had Lyme since 2012 and because my test was considered a false positive I was never treated. I recently was having heart problems so I went to the doctor and I had an infection so the NP decided to try the antibiotics for Lyme and right away I could tell it was working. I am not sure I will get better all the way but I am working on it with PT and eating no gluten, soy, peanuts. My whole head was full of fluid it is draining still 2 months later. Pain leaves my body very gradual and my brain improves and energy ....so many people have it. I believe both my parents had it. Thanks for spreading the word I plan on telling my story when I get better
Fluid in head?
@@royadamelita5554 I know that sounds crazy I should say my inner ear kept filling up but I didn't have an infection
Dear Rachel, I’ve watched most of your videos. How are you feeling today? Is your POTS gone? All the love from Ireland ❤
I have been sick for around 8-9 years and have spent the last 5 treating chronic lyme. First the hardcore alternative route, and then the hardcore antibiotic route, and then both together. Went after all the co-infections and parasites etc and got absolutely nowhere. Fast forward to now I just had a CCF for CCI (too soon to know if it helped yet). I just feel my heart hurt for you when you wonder if you could have avoided all the surgeries had you discovered lyme first. Not necessarily so! Maybe you having done the surgeries will allow for the treatments to actually work! From my experience, once you develop CCI no amount of lyme treatment will make a dent. I just don't want you to regret your surgeries. I knew about lyme and treated it extensively for years and all it did was lead me to getting a CCF. I think doing both the surgeries and the lyme treatment together is what is key ! If anything I think the order you did them (spinal surgeries first and then lyme treatment) will be more productive!
They know about it. They've been threatened to not acknowledge it.
Thank you for sharing your story. I’m sorry you’re going through this. I was diagnosed with POTS a year ago but showed symptoms for years, and now my health seems to be deteriorating in the same way. I hope you have some better days and find relief for your pain. You’re brave and give me hope ❤️ would you be comfortable saying which specialist diagnosed you with Lyme? Since I’ve been looking for a Lyme specialist anyway.
P.s. this is such a silly question but I have CCI/AAI and I didn’t know if you felt having long hair at all affected your neck pain?
Thank you so much for your sweet message, Anna! I'm sorry to hear you're struggling with similar issues. The specialist I saw is Dr. Steven Phillips in CT. The first appointment is unfortunately really expensive, but he makes an effort to have the treatments covered by insurance (which for many lyme docs isn't the case). As for my long hair and CCI, the heaviness of it definitely can worsen pain, but for me mostly when I have it in a ponytail/bun (so I avoid that). :) I really need a haircut but those are always no fun either as I'm sure you know 😂Wishing you luck with everything!
Anna sweet gal, don’t give up! I too was diagnosed with POTS, they even thought MS, etc. But all along it was 3 things: chronic LYME, A sister Protozoa to Malaria, and mold toxicity. Don’t give up and please watch the encouraging film my hubby made soon after we were married. We now have 3 amazing healthy sons, and I have been 100% free of all Lyme, malarial, and mild symptoms. Now I just love with head pain and migraines from the 10+ concussions and other head/neck trauma I’ve sustained. The joy of the Lord Jesus is my strength and song. I pray you are rushing to Him in all you need. Xox (Justin and Christa Vanderham “our story” on TH-cam)
AHH I'M SO GLAD YOU GOT A PROPER DIAGNOSIS!! I remember commenting on one of your videos because we had such similar symptoms. I'm so so happy that you're getting proper treatment. I've been in treatment for around 6 months & I'm doing a ton better. The herxes are awful though ): I feel that
(I hope that you got tested for Babesia too if you haven't - it usually accompanies bart and lyme)
Aww thank you so much!! ❤️️ I'm really glad to hear you're seeing improvements!! I hope you keep seeing more!
If u dont me asking what meds are tneu treating you with. The doxycylone nearly killed me.
@@tommeabenson887 ofc not! I'm on a lot of meds, some for Lyme, and others for the co infections. Some of the drugs I'm on are experimental, so not every LLMD will prescribe them.
For Lyme, I'm on doxycycline and disulfiram.
For Babesia, I'm on Artemisinin, Krintafel, and Coartem.
For Bartonella, I'm on Azithromycin & doxycycline (adding Rifampin later).
I'm sorry you're having such a hard time with doxycycline. I had a really bad herxheimer reaction with it. It felt like I was dying & I was in so much pain. The best thing you can do for your body is try and manage the herx with things like activated charcoal, milk thistle, epsom salt baths, lipsomal gluthione, etc.
It took me a few months, but I was eventually able to tolerate the doxycycline and now don't even notice when I take it! My Babesia meds on the other hand 🙄
@@ohmystars1 This whole experience is life changing and depressing. Im not sure what the other co infections are but did that show up in your blood work? My rheumatologists and Infection disease doctor feels I dont have lyme anymore even though my western blot test comes up positive sometimes. They think its fibromyalgia. Im lost and honestly tired.
@@tommeabenson887 I completely feel you. I am forever changed because of this & not in a good way. My Western Blot was negative, but most of my bands were positive so I just sought treatment with an LLMD because I couldn't stand the CDC's bogus criteria for a positive. My rheumatologist refused to go any further with me and basically said it was all in my head. I actually got a misdiagnosis of fibro 4 years prior. This entire experience has taught me never to put faith in doctors which is so sad.
The only way to get proper treatment is to see an LLMD that follows the ILADS guidelines. Hang in there! To get tested for Babesia, it's just a blood smear. For Bartonella, I'm not entirely sure. I just know the tests for that can be really innaccurate too 🙃
Before admire doctors but after suffering for long covid,I hated them I feel what you are going through
I don't remember being bitten either. I did have rashes off and on. I went to Yale and they said, 'you don't look like you have Lyme so we won't test you for that'. This was last year. I went to a naturopath, who ordered blood work and said you have 3 bans positive and really elevated. This was 2 months ago. She said you have chronic lyme but the CDC only recognizes lyme if 5 bans are positive, not 3. But said ' I recognize any bans that come back positive, as lyme.' The symptoms you've been experiencing for 15 years have come to roost. But she felt she could help. I am now displaying signs of bell's palsy, slurred speech, muscle weakness, digestive issues, headaches, joint and muscle issues. I have a friend who works with NASA, he did a body scan and confirmed with the naturopath diagnosed. So, I am Doxycycline AND a naturopathic regimen for lyme.
I'm going on 10 plus years trying to treat myself and my lyme test pull up positive as well
Really hope you can beat this
Is there a possible way you could start IVIG or stem cell therapy? Really happy you caught it! Hope this is what started it all and you recover back as soon as possible!
Thank you Raphael! In my research I've seen that IVIG and stem cell are great options for some people, and may look into it in the future if needed.
Rachael Elizabeth I apologize for recommending so suddenly especially overwhelming receiving a late diagnosis! You got this! Give this Lyme a good fight! 👏
Oh I am so sorry to hear this Racheal. I am not sure if that is a sorry or a yeah finally someone found it. Lyme is nasty. I have never been tested so I don't know what it feels like but I have heard that it is a really nasty thing to have. Makes you wonder how many people with EDS and co conditions have Lyme as well. I had the same type of thing where I was ok as a kid and then as I got older I got sicker. I think that this video can help a lot of people. I bet it wasn't easy sharing necessarily since you are still taking in the info but this video could help a lot of fellow EDSers find a possible answer for them too. The what if answers are really hard. I felt that way about my tethered cord. I had severe scoliosis (a rare left thoracic curve, 5% of cases and is a HUGE red flag for underlying neurological conditions) that was caused by the tethered cord and if it was caught when I was a baby (the TC) I could have avoided wearing the Boston Brace for 2 years that causes so much pain and discomfort. (I have sensory issues so it was really bad) and I could have avoided my spinal fusion. It was really hard knowing that the docs missed it for so long and that I have also may have some permanent damage from waiting so long. ( I also have a shoulder condition that were caused by the fusion so knowing I could have avoided that is hard) I think it takes time to heal from those questions and I honestly think that you have to let yourself grieve. It is ok to be upset and angry about this being missed. People will say that anger isn't a helpful emotion but being angry and feeling what you need to feel for a certain amount of time is not a bad thing. Thank you for being open and sharing! I hope the treatment is not too nasty and that you have a really good outcome from it. Keeping you in my thoughts and prayers!
Yes, I definitely wonder how many people with EDS have lyme as well. Or similar infections! The more I research about it, the more my head spins, haha. I remember you saying you have classical EDS, so I wonder if that changes anything. Because hEDS is just a clinical diagnosis, there is so much unknown about its cause (almost like POTS).
If you're interested in lyme, I'd definitely recommend the documentary "under our skin" (it's on youtube) and Dr. Steven Phillips has a lot of great informational videos as well. Fox news has a series called "lyme and reason" that I enjoyed watching too. I definitely don't want to be that person that tells everyone they probably have lyme, but hope I can spread awareness, as it's sad how misunderstood it is in the medical community (and how often its missed by doctors that don't understand it). ❤️️
I totally understand about the "what ifs" and wish you could have been treated earlier for TC and avoided all of the pain it caused later :( Rooting for you Kristin!!
@@HealingWithRachael Thank you Racheal. Yeah I wonder how if having a different type of EDS changes things. So much more to be learned! I hope you start feeling better with the treatments you are starting.
I’ve been struggling since I was 8, I’m 23 now and just got diagnosed w Lyme. Also misdiagnosed 😭 are you able to share which doctors you saw? Im also worried about the unknown treatments and I would love to see top providers as well, no matter their location. Thank you
I had a deer tick imbedded on my stomach like 7 years ago, I had the ballseye ring and the hole 9 yards. I just never got tested.Now 7 years later every joint aches and I over sleep every morning and get migrains.I think im going in to get tested and hopefully get it out of my damn body.
It’s weird to me that your initial doctors would have tested you for tickborne illnesses if they were just going to disregard the results. I finally found a provider who tested me for Bartonella. I tested IgG positive for B. henselae in January of this year after ~15 years of debilitating chronic fatigue. I took antibiotics for 2 months and now I am on a variety of herbal supplements and vitamins. I did feel worse on the antibiotics - I was SO nauseous and had so many GI symptoms. I took my last dose of antibiotics about two weeks ago and I already feel SO much better. Energy level is improved, brain fog is WAY better, and I feel a lot more positive in terms of mood.
I’m glad you finally have an answer for your symptoms and I am wishing you hope and healing on your journey 💗
Hang in there kid.... been dealing with this crap for 20 years. I have been documenting this for about 11 years now and what works and what doesnt... hit me up if you need help. There is hope... and i will get the word out soon as im done with this documentary.
I actually had a hugh bulls-eye rash on my leg but never saw a tick. This was way back in 1990. I started having really stiff joints so I went to an acupuncturist 3 times a week for many months. I had mentioned the rash to a pharmacist I went to after getting a tooth pulled. he said that since I did not have a fever and because we were in the Westcoast that I probably did not have it. I started doing all kinds of alternatice health things.
Short story... I did get a Western Blot test many years after my bite. It came back equivocal. A friend had just gotten a positive test for Lymes after her sister who lived in Connecticut got it. My friend almost had her overy removed but with the diagnosis she was able to keep it and got successfully treated.
I then called the CDC and asked them how you get diagnosed for Lyme. They told me (1996 then) that the only true confirmation is a rash bigger than 2 centimeters..not necessarily a bulls-eye. I told her about my rash and test. She told me to go get treated for Lyme's disease. I went to the same doctor as my friend..an internal disease specialist. He immediately put me on a self administered daily dose of antibiotics. I had a pic line put in my arm and I had to put my daily dose into it every day for 6 weeks. The detox was very difficult..herximer sections. My other doctor who was a nutritionist and did alot of alternative therapies was my biggest help. He said to do whatever I could to lower my stress levels, gave me a list of vitamins along with an opiod pain prescription, and really ssupported my journey. I also did oxygen colonics. One thing I did in his office that was amazing was a light therapy. I had my blood run through some kind of machine that did something to it with light. After I did that I felt energetic again and my mood was great again. I really reccomend you go to naturalpathic doctor who treats Lyme patients. Taking supplements to help with detox is really important. Also..do not use amalgams in any fillings you get. They release mercury and other things into your system. I could go on and on...The important things I mentioned here. You can get better..focus on that. Find music and do things you enjoy as you get better. I had Lyme for 6 years before I did the antibiotics. Mybe they are not even necessary anymore...I do not know because I do not think about Lymes anymore. Wishing you an amazing life!
Well, on one hand I'm really glad you have a potential, but can empathize with the can of worms it opens and having all of your mental wheels turning wondering about "what if?!" I had pretty bad mono as a teen, and I'd heard that some people think that, as well as Lyme's can cause your body to attack the connective tissue. I mean, I had issues suggesting EDS before that, and sounds like you did too before possible Lyme's... So I wonder if the already impaired connective tissue makes you more susceptible. ?? Either way, sending positive vibes and will be hoping to hear good news in the future!
I'm keeping the faith the good Lord will deliver you a clean bill of health. And I'm looking forward to seeing you're beautiful smile.
Finally a diagnosis, even though it's not a good one. I went undiagnosed for 14 years, I remember the bite and the rash, but I am in Texas. I thought lyme was a problem in New England back then. So, I thought it was a strange mosquito bite and the flu like symptoms were "cedar fever". Years later, it ends up I'm also not allergic to mountain cedar, so cedar fever, a common complaint in Central Texas, would not bother me.
Getting a diagnosis helped, I thought now I finally get to move on to treatment. But there are no LLMDs in my state, and it's so controversial to treat this illness. So it's been more medical gaslighting. I've tested positive 4 times, even after a month of doxy, which isn't enough for late lyme disease. They also refuse to check for any co-infections. They also want to send me to a rheumatologist, who try to suppress my
immune system, which I don't want with an infection. It's a very frustrating illness, I hope you find some answers and relief.
I get treated like I'm drug seeking antibiotics now. Ironically, I was on doxycycline for 3 solid years for cystic acne when I was a teenager, but they won't give it for lyme.
I got diagnosed with Ms but have also Lyme. Difficult treatment.
I have been going thru an ordeal with this too. But I did have the bullseye rash and all the
symptoms that dr. said I had lyme disease and put me on antibiotics. It immediately helped
me so much, but then 2 wks later flared up full force all over again. So dr. ran blood test and
said came back negative for lyme. So now I don't know what to make of it and worry the
test could be wrong and I could get really bad again. sigh. I did have a tick bite that turned
really nasty.
I have It, It’s Ben about 8 years with it now. Maybe longer. I wake up some nights feeling like my knees are broken or my arms. I think it’s spreading, is there nothing I can do other than to go get antibiotics and start taking them daily again. It’s such a pain in my situation. :( my situation horrible. Is there anything I can do to make the spread stop, or to counter it.
I really feel for you, I do. Thank you A lot for this, just hearing someone’s input, do you have any updates? Iv Ben diagnosed for years, I just had to get antibiotics and do a cycle or 2, so 1 to 2 months then I’d feel better and I could go any were from 6 months to 2 years untill I had to go back for more. But now it’s every year I need more. Iv Hurd that there’s no proof antibiotics do much good, they just make it lay dormant, then it comes back with all its Symptoms.Iv seen animals die of it, it’s a fairly quick and just horrible death. I feel like it’s the same for us, just a much much slower decline. Like over years and years evan a life time. We’re with a dog it’s over a month or 2 max
Hi😊.. to give you I hope answer to a question..You couldnt avoid the cervical fusion.. Ive got severe myelopathy due to congenital and then more tickbites.. has nearly all of your symptoms plus more.. unfortunately 🥺.. not aknowledged tho.. due to live in sweden, here its just a psych prob🙄😓..Im on dsf for lyme right now// Thanks for sharing❣️💚What a journey😩//Linda E 🇸🇪//
Did you use Stephen Buhners protocol?
Where is your pain located mostly? I’m just having a lot of trouble with d chronic inflammation in my back neck hip most on my right side. I just wanna see similarities
How did the treatment go?
Hello, I recently finally got diagnosed. I think I’m getting a relapse, been very stressed. Well I’m running a mild fever, body aching all over and some diarrhea. No other symptoms. Do you think it’s a relapse?
This is happening to so many people worldwide its crying shame!
I couldn’t agree more!
So it was CCI , intracranial hypertension, EDS or lyme?
I’ve recently been put on treatment for lymes after I had the typical bull eyes rash. On my third week of antibiotics and have had the worst flu like sickness ever! Had a blood test Friday to see if it is lymes disease but after the past week of being so poorly I’m certain it will come back positive. Will I feel like this for a long time or will I get better after already being on treatment? I’ve never felt so poorly in my life and I had Covid last year!
How are you feeling these days? What's your prognosis looking like?
I also am curious. Did you ever have odd autoimmune issues, rashes, fluid around your heart or fevers that no one could figure out? I also had Epstien Barr that lasted a really long time for me and became chronic. (CFS) I ask because I was blown off by doctors about that and now really wonder if Lyme is a possibility for me as well. Thanks for sharing!
EBV and specifically chronic EBV often goes hand in hand with lyme and co from what i understand. very common to have both
I'm so sorry that doctors have not taken the CFS seriously, Kristin! :( Actually, from the research I've done, autoimmune disorders are very common with chronic lyme, and many doctors think are often caused by lyme. (Which was shocking to me!) I haven't personally had fluid around my heart or fevers, but that can be a symptom of lyme for sure. I do have chronic "reactivated ebv" in my blood tests as well.
@@HealingWithRachael Interesting! Thanks for the info.
I've had an unknown health condition for about five years now that has been causing a wide array of symptoms like exercise intolerance extreme fatigue feeling cold numbness in my extremities digestive problems and more. I feel like it might be Lyme's disease
Have they checked for POTS, postural orthostatic tachycardia syndrome?
Wait, what did the doctor put you on to cause that reaction?
Did your blood test keep coming back as no lymes disease
What is we havent tested, but had A LOT of ticks on us as children? Probably, best to just do the treatment, right?
How the hell do they miss that for 9 years!
did u get any cure at all?
I was originally, in 2013, told 1-2 years.
Not really true. 1st of all, this takes a lot of patience. You must, we must pace ourselves and be extremely patient.
I took a break for a year and 1.5 years due to lack of financial support. I also was reinfected in 2016.
It's 2021. I've very likely had it since the 90s at least. I'm 51.
Don't get an central line. Most people don't stay better from lots of abx.
I will start my videos soon. I'll be glad to help. Look into Rife machines, and infrared sauna, etc. Detox protocols are ESSENTIAL and most important.
Hi , have you heard about Dr Robert Morse in Florida...lymphatics and herbal naturopath?
did they put you on ceftriaxone iv?
they did not!
Damn sounds just like my story
Glad you finally were diagnosed properly. I had the same problem. Was only tested once and my doctor and didn’t want to hear about it after that because it came back negative. 3 1/2 years later I find out that I not only had Lyme disease but rocky mountain spotted fever at the same time and treated myself with potassium iodide, My present, the doctor said, I likely save my own life. I have hereditary neuropathy on top of that, so the tick diseases Accelerated that disease and caused all sorts of problems, and some of them are still ongoing. I likely have stage three Lyme. I am in the process of searching for a lyme literate doctor
I knew u have Lyme? And yes, it’s scared and disappoint how little doctor care for Lyme.
Dear Rachel, your story sounds SO familiar to me...I have Chronic Lyme, that was misdiagnosed for many years, I live in Spain where none believes in chronic lyme so it is a hard path to walk. I have been recently diagnosed of CCI and possibly hypermobile EDS. I'm sure there is a connection between all this illnesses, EDS, CCI, POTS, Lyme, mialgic encephalomielitis, fibromialgia, etc. The Collagen hypotheis for me makes a lot of sense, having an underlying collagen condition + lyme makes the problem worse. Maybe in a few years this will all be clearer and less people will be ignored and neglected.Feel free to contact me if you need to talk :) let me know, I've done some abx and now on natural protocols to heal. Lots of love, you are stronger thatn what you thing, you are amazing!!!!!!
Have you noticed any improvement since you started your treatment?
Yes I’ve noticed some small improvements. My doctor expects it to be a long road because of how long I’ve gone untreated though. Things are up and down but we still feel good about the path we’re on!
@@HealingWithRachael Good to hear you've seen at least some improvement. Hang in there. Read 2 Corinthians 4:17 :)
@@traviscook7231 I love that verse, thank you for sharing!!
❤️🙏😢
❤️
Heal the gut
Check out Stephen Buhner about Lyme.
Dearest, Would you be so kind to share the name of your lyme doctor? Thanks, so much.
Hi Denise, Dr. Steven Phillips in CT. He has lots of great videos on TH-cam and Facebook about chronic lyme/bartonella. I watched them all and learned so much. Good luck!
All of those are effects of lyme disease. I can’t believe they never tested you thoroughly and specifically! You may start to feel somewhat normal now
I have lyme disease and I never knew i was bitten by any ticks! But I have read a lot of us didn’t know! T a tiny tiny deer tick can bite us in so many places that we won’t notice.
I had it for years and I got to stage 3 to the extreme arthritis and Im like you, I’ve got a long road and am just starting out. I’m also a doctor
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Doctors are so freaking stupid I swear to God. So I had a dog with 8 inch hair we lived in Connecticut. The dog started having joint problems and couldn't walk. They wanted me to spend hundreds and hundreds of dollars on all these lab test to check for Rocky Mountain spotted fever etc. I said why don't you just treat him conservatively and give them a damn antibiotic and if he's better in three days then we assume it was lime and that start with the rocky mountain spotted fever since the dog never went to Colorado. Like do the obvious. Then he want to charge me $100 for the same antibiotic another doctor gave me and it cost four dollars at Publix for doxycycline
IV antibiotics are the only thing that works for late stage lyme.
I told everybody this go to a country doctor
👊🇺🇸
How is it possible to get misdiagnosed with so many different things? Have you done a Lyme disease test since high school? How accurate are the Lyme disease antibody blood tests? I'm sorry you have had all of this. It is crazy that you had all of these complex surgeries when it was Lyme all along. I don't understand this at all.
It is so sad that Lyme disease was the source of all of these things like EDS etc. I'm so sorry you were led to believe it was genetic. It seems like your story is really a case study for how the US health care system fails patients.
Lyme is known as the "great imitator", so it often causes and looks like other conditions. It's not that I don't have the conditions that I was diagnosed with, but the underlying cause was misdiagnosed (hopefully that makes sense)!
Unfortunately, lyme testing is not very accurate/reliable, but there are certain types of tests that are better than others. It is a helpful tool for diagnosis, but some people will test negative and still have it. Yes, I'd had a basic lyme western blot test done, which came back "negative"--though it was really partially positive, but the CDC requires a certain number of strains to be positive to call it "positive". My bartonella testing was full-blown positive!
Anyways, I agree its so sad that the majority of the medical community doesn't recognize and treat lyme properly! Hopefully that will change in the future
@@HealingWithRachael I don't understand. If your Bartonella test was very positive why didn't they do more investigations? Why didn't they put you on antibiotics? It seems like you could sue them for malpractice.
Dean Abele My bartonella test was recent. The positive testing 9 years ago was considered a false positive because I didn’t recall a tick bite. Unfortunately it’s not uncommon for people to go untreated even with positive testing. It seems criminal, but unfortunately most medical professionals are very uneducated about lyme disease! 😞 Hopefullt that will change in the future!
@@HealingWithRachael Seeing a positive test result and then ignoring it because you don't remember a tick bite definitely seems like malpractice. I think you should consider contacting a lawyer.
My doctor thinks I have PoTS. I already spent £50 of my own money on at home Lyme disease test (Borellia) which was negative. Do you think I should spend another £210 of my own money for a Bartonella test? I don't recall any tick bites. I am getting better but these last two months have been very tough.
I hope your antibiotics are working?
Those dummies!!! Gahh makes me so mad.
Bee stings
Shows u how much of a misit our medical field is
cute
Oh no. You poor thing. This is unforgivable. Are you saying that all of your medical issues are due to Lymes? Buy yourself a good baseball bat and visit your doctors really soon. I'm so sorry. Jesus, please watch over this wonderful child and in your mercy, please heal her. Amen.