Both Lyme disease and fibromyalgia are very frequent misdiagnoses for Ehlers Danlos syndrome. Get the antibody tests. That said, if treatment targeting Lyme disease and parasites improves your health, stick with it if it helps. The majority of your symptoms are perfectly and adequately explained as secondary to your Ehlers Danlos syndrome, so don't get discouraged if you reach a dead end as you explore Lyme disease and parasite treatments.
@@Dulcimerist Lyme Disease makes EDS worse, because Borrelia metabolizes collagen to make energy, and EDS is a disorder that effects production of new collagen.
Hello Aimee. I just found your channel as I was searching for new info on POTS. As soon as I heard your story I immediately thought Lyme's disease. And sadly, here is your new video. Lymes is the great imitator. I've had it since 1974!! Please do keep us posted on what you find out.
You are the perfect candidate for the DNRS program. As someone who has suffered with lyme Mast Cell , CFS . Multiple chemical sensitivity. I had many medical emergency situations. Took everything under the sun that only made me bed ridden. UNTIL DNRS .and get life wave x39 stem cell regenerative patces. Good luck god bless.
Jill, I am so happy that DNRS worked for you! I did the program twice with fidelity while I was working a full time, stressful job. I also signed up for the expensive coaching. I discovered that the program does not work, as long as you are continuously exposed to high stress loads. Unfortunately, the program helped only some for me.
@@texasgoddess323It isn't that DNRS doesn't work. It definitely does, but as you have experienced and realized, it doesn't work ALONE. We need to change our entire lifestyle and eliminate chronic stress to heal. Thats foundational for healing. So if we are "doing all the right things" but living in a state of chronic stress daily from work and/or home life, we won't feel much better from any of the programs we do. It requires us to change our entire lives in order to feel better. Sending you all so much love and healing! ❤
@@healwithlaurennicole Hi, Lauren! I wish they had told me that! I came to that conclusion on my own years later after I had quit my job, that you cannot heal while in a stressful state. As I was still working and going through DNRS, I was still symptomatic, so I hired coaches at $200 a session and ppl to help me with tapping. Not one told me that I had to quit my job in order for it to be effective! I was single and supporting myself, so quitting without some type of income created a huge hurdle.
@@texasgoddess323 I'm so sorry, that makes me SO ANGRY that they didn't tell you that and just took your money without ACTUALLY helping you! That is the FIRST thing I tell people in my content, that all of the nutrition, somatic exercises, brain retraining programs, etc are supplemental. They aren't the CORE of us healing. We need to get out of chronic stress if we want to heal, and then use those other things as tools. The problem is people try to use them as the foundation and they don't actually have the true necessary foundation of safety in their nervous system daily because of their stressful lives. That breaks my heart and makes me so angry to think of how many people are desperate to heal and they aren't being given the proper support on their journey from people who claim to have the answers. :( I take a massive holistic lifestyle approach in how I've healed myself and how I've helped the handfuls of clients ive worked with over the years to heal. As you said, it requires that we make massive changes in how we live from day to day. That often includes changing what we do for work and how many hours we work each week, etc. People spend so much money desperately seeking answers on how to heal, when if they understood these things fundamentally, they wouldn't have to make as much of an income to support themselves because their health wouldn't cost them so much trying to fix all these issues and symptoms. The system is backwards and its designed to make money and keep forever customers. They don't want us to figure it all out because then they wouldn't have customers anymore. I work with my clients for 3 months, thats it. Then they go on to continue healing themselves. I've heard from clients years later that say they are fully healed and still can't believe it. Because I help them build that foundation in those 3 months and once they understand the foundation, they are set for life to heal THEMSELVES. they dont need me anymore. And thats how I want it. Anyway, I share as much as I can about all this in my free content on youtube. I hope you'll check it out if youre interested! Thanks for the great convo!
Hi Aimee! I have been watching your videos for a while and I am so sorry to hear about another illness diagnosis. For what it's worth (and I know everyone is different), but I saw a holistic doctor about 9 years ago, long before I had any symptoms of fibro, POTS, etc. It was mainly because I was feeling depressed but didn't want to take antidepressants. They also told me I had a parasite and had me buy a bunch of supplements and go on a very strict diet. I technically felt better, but it was a never ending money pit of buying supplements and other things that aren't covered by health insurance. I gasped out loud when you mentioned a parasite because I didn't even have any physical symptoms at the time and they diagnosed me with one, too! Not to sound skeptical, but I would just keep that in mind as you progress with this treatment plan.
I totally understand this! I was burned by a holistic doctor years ago, and was charged thousands and thousands of dollars. It felt like a scam when I look back. My husband especially was very skeptical of this new doctor because of our past experience. I was sceptical too. I didn't explain the real reason why I trust him, because it's personal and I didn't want to share it on the internet. But I do trust this doctor! 😊 And changes are happening with this treatment!
@@Aimee_Esther The FoodMarble detected Hydrogen and Methane, right? Those are very likely produced by bad gut parasites -- something like Blastocystis or Entamoeba, maybe Candida also. The "gut parasites" diagnosis from your current doctor seems to align with the facts.
In addition to all the things, I have Lyme disease as well. Thankfully diagnosed here in Europe, and as soon as I tested positive, I was given immediate treatment. Also had the huge telltale bullseye on my thigh. Treatment is super doses of a cocktail of antibiotics. Herxing is a painful reaction to these antibiotics meaning muscle cramps, fatigue, etc. It caused me to writhe and bite my pillow. But I'm thankful I wasn't seeking a diagnosis in Canada as at the time even the infectious diseases unit didn't believe in Lyme. Insane. Even if one tests negative, it may not mean anything because spiroketes leave the bloodstream and hide out in organs where they can be undetected in bloodwork. I strongly recommend seeing a Lyme specialist to ensure you are treated accurately. Some suffer needlessly and cannot care for themselves, though that's nearly always due to not being diagnosed for years. I have done a LOT of research on this. Even though treated quickly, I have chronic Lyme, probably as I have so many other illnesses. Frustrating to deal with doctors about yet ANOTHER issue, isn't it? Sheesh. One day at a time. Heck, one hour or minute at a time! 😊
Thank you for sharing all that. It helps to know someone else understands. I have been doing a lot of research and feel hopeful that these answers will help bring some relief, but I understand it could still be chronic.
@Aimee_Esther I pray you won't get to the chronic stage...it's very likely you won't. Thankfully we have spots of joy which keep us pushing and pushing. Some days I give up. But the next day (hour) may be a little bit better. You know what I mean. Imagine a full 24 hours pain free and fully rested to do what you like without repercussions the next day. That would be such a blessing!
You should listen to Ren. He is a multinstrumentalist. He was misdiagnosed for almost 10 years. He has Lyme and the things he went through is crazy. He discusses his medical issues in songs and he also does uplifting songs. His music has helped me greatly! Worth the listen Hi Ren by Ren
I wish you the very best in your journey and pray you stay feeling a little better. I also want to say I have missed your videos so much as you make me feel less alone in being chronically ill. I hope you can still do these videos even if less often but if you can’t I wish you all the best and continued support from your community.
Maybe the food poisoning could directly trigger POTS. Pregnancy, operations, viruses and accidents can all trigger POTS. So maybe food poisoning could trigger it as well. The EDS makes POTS more likely.
I’m confused. According to the medical school at University of Pennsylvania you can only get Lyme disease if you are bitten by an infected tick. I got bit by a tick and had to have preventative treatment for Lyme disease and that is what I was told by my treatment team. What does food poisoning have to do with Lyme disease if it’s caused by a tick bite?
About one third of Lyme Disease patients were never bitten by a tick and never go the bullseye rash. Other routes of infection exist but the NIH and CDC are not funding any research to find out what those might be.
@audreybell2878 I have Lyme which indeed can only be contracted by an infected tick bite, according to all the specialists I've seen at Lyme clinics in Europe where they are much more technologically advanced in the field than most places.
You can definitely only get Lyme disease from an infected tick which leaves a tell tale bullseye mark on the skin - which can be the first indicator - it cannot be caught any other way and certainly not from food poisoning - this is getting ridiculous at this point
Not to add another thing to your plate but I feel like you should do an ERMI test on your home and look into a possible CIRS diagnosis. You explain it perfectly the fatigue the shocks everything
Yes, the same genetic haplotype(s) that can make you more susceptible to getting sicker from Lyme can also make you more susceptible to mold illness (CIRS). The two go hand in hand. Living in a moldy house brought my previously misdiagnosed and untreated Lyme out of hiding. The ERMI test is the best test at the lowest cost to determine the mold levels in a house. It’s a dust sample test. The least expensive test for mold illness is the VCS test. It’s a visual contrast sensitivity test that you can take at home on your computer. It’s free technically but if you donate 15$, they let you keep the detailed results so that you can show a doctor later. It’s worth the 15$. Google search “VCS test CIRS mold” and it will be the top result. Envirobiomics is a great lab if you want to order the ERMI mold test. Some good resources for mold are: Moldfinders podcast with Brian Karr, on Spotify or TH-cam BetterHealthGuy podcast on Spotify or TH-cam. He also is knowledgeable and interviews experts on Lyme and many relating topics. The CIRS Group TH-cam channel, with 2 women…I forgot their names but they give very succinct information, highly recommended. Change the Air Foundation podcast on TH-cam Websites/Blogs: Mold Help For You Surviving Toxic Mold Mold Free Living Surviving Mold
@Aimee_Esther Yes, the same genetic haplotype(s) that can make you more susceptible to getting sicker from Lyme can also make you more susceptible to mold illness (CIRS). The two go hand in hand. Living in a moldy house brought my previously misdiagnosed and untreated Lyme out of hiding. The ERMI test is the best test at the lowest cost to determine the mold levels in a house. It’s a dust sample test. The least expensive test for mold illness is the VCS test. It’s a visual contrast sensitivity test that you can take at home on your computer. It’s free technically but if you donate 15$, they let you keep the detailed results so that you can show a doctor later. It’s worth the 15$. Google search “VCS test CIRS mold” and it will be the top result. Envirobiomics is a great lab if you want to order the ERMI mold test. Some good resources for mold are: Moldfinders podcast with Brian Karr, on Spotify or TH-cam BetterHealthGuy podcast on Spotify or TH-cam. He also is knowledgeable and interviews experts on Lyme and many relating topics. The CIRS Group TH-cam channel, with 2 women…I forgot their names but they give very succinct information, highly recommended. Change the Air Foundation podcast on TH-cam Websites/Blogs: Mold Help For You Surviving Toxic Mold Mold Free Living Surviving Mold
@@megangammon9777 Yes, the same genetic haplotype(s) that can make you more susceptible to getting sicker from Lyme can also make you more susceptible to mold illness (CIRS). The two go hand in hand. Living in a moldy house brought my previously misdiagnosed and untreated Lyme out of hiding. The ERMI test is the best test at the lowest cost to determine the mold levels in a house. It’s a dust sample test. The least expensive test for mold illness is the VCS test. It’s a visual contrast sensitivity test that you can take at home on your computer. It’s free technically but if you donate 15$, they let you keep the detailed results so that you can show a doctor later. It’s worth the 15$. Google search “VCS test CIRS mold” and it will be the top result. Envirobiomics is a great lab if you want to order the ERMI mold test. Some good resources for mold are: Moldfinders podcast with Brian Karr, on Spotify or TH-cam BetterHealthGuy podcast on Spotify or TH-cam. He also is knowledgeable and interviews experts on Lyme and many relating topics. The CIRS Group TH-cam channel, with 2 women…I forgot their names but they give very succinct information, highly recommended. Change the Air Foundation podcast on TH-cam Websites/Blogs: Mold Help For You Surviving Toxic Mold Mold Free Living Surviving Mold You Are The Healer . o r g
@@megangammon9777 I just realized I should clarify, Megan you probably already know all the CIRS info, my comment is more for others who may be curious if mold is contributing to their symptoms.
Thank you for sharing Aimee. I always appreciate your videos. I'm sorry to hear about the new diagnosis, but I always have Faith that you are going to get better. My healing journey has been a long haul, but slowly improving.
Question: I just watched some of your older videos where you were cleaning and handling babies, and it got me to think to ask: How did you handle chronic illness and pregnancy? I am a sufferer myself and being afraid of getting pregnant not knowing if I can handle added discofmort an pain from a pregnancy, or if it would be safe for the baby. How was it for you?
My holistic therapist found bacteria in my body-mostly my gut, and treated it with tinctures and now I can actually handle eating. It made my digestion tolerable. If I ever got sick from the supplements/tinctures my doctor would lower the dose. You might have to ask him to lower your dosage or try a different medicine. My doctor tested for tons of bacteria (including testing positive for H-pylori)and that’s how it was found. My mom had an African parasite from eating food in Africa that she had for years and American doctors don’t even test for it, even though it slowly eats your organs till it’s too late! Her digestive system is so much better now. The little things add up. Now that I have more diagnosis’ and am taking medication my ME/CFS hasn’t been so severe and I’m not crashing. I’m still bedridden 95% of the day but when I do go do something I don’t crash. 💛
Dear Aimee I am so sorry to hear this. I am not sure if you are aware of this but do you think you could potentially have cervical instability have you been tested for it
That's what I'm thinking too. I'm currently being treated by Dr Hauser and I'm not completely better but I am am not near as disabled as I was before my upper cervical chiropractor and Caring Medical 🎉🙏🙏🙏 I had been diagnosed with everything from severe anxiety to FND and chronic fatigue. But nobody wanted to acknowledge that these things PLUS the heart attack symptoms, tremors, twitching, seizure like episodes, digestion issues, dizziness, light and sound and vibration sensitivity and much more was coming from my neck and I knew it was lol bc I didn't have anything except fatigue and occasional headache before I twisted my neck, bumped my head and then got really disabled after I did a pull-up on the ladder at the wave pool. Especially if she has EDS she most likely has cervical instability ESPECIALLY since the adjustment won't hold. Mine wouldn't either until I started prolotherapy and I still do get atlas adjusted but I can go much longer with less symptoms now between adjustments
Lyme, long Covid, etc., seem like one and the same, or at least similar expression of immune system overdrive. these conditions often go combined, I myself have POTS/MCAS, technically PCOS I guess (had one cyst so far, but the hormonal profile is there), neuralgia, arthritis, uveitis, SIBO, you name it... neurodivergence, in your case ADHD, and a specific genetic setup is what predisposes people to have these chronic problems. ticks are my big fear, because I know that with my setup and existing conditions, I am guaranteed to get Lyme.
And we're prone to mould I have heds fybromyalgia cfs years and decades I grew up in a farm so may have been bitten but autism us the reason it would cause the problem s autism mcas
Hi Aimee, Lyme, wow! So you asked for tips. Where to start? The good news is that cognitively you are doing better than many people with acute Lyme Disease. So your point of leverage is your ability to think, read, integrate information. If you pay attention to what works for you and send it back out to the world in your videos, then talking about your Lyme journey will gain you lots of Lyme friends. Structurally, did you know that the bacteria in Lyme Disease metabolizes (breaks down) collagen to make energy? EDS is a disorder in creating new collagen. So EDS + Lyme Disease is a combination that will be benefited by supplementing with collagen, like chicken broth or pho ga soup or pho bo soup. Energetically, the fatigue in Lyme Disease seems to be related to damage to mitochondrial membranes. So supplementing with the goal of supporting the health of the mitochondrial membranes is beneficial. Also, good quality and good amounts of B Vitamins (B1, B3, B6, B12) can kick-start the Krebs Cycle for better energy production within the mitochondria. One idea for a philosophical frame about Lyme Disease and how you should approach healing from it is "Gu Syndrome with Dr. Heiner Fruehauf" which is episode 116 of BetterHealthGuy show. A thumbnail summary is this: healing from Lyme requires a point of leverage to work against. My feeling is that the point of leverage is the mitochondria, where energy is liberated in cells. A second lever is to balance the Th1 and Th2 expression of the immune system (that is, nudge the immune system to stop causing brain inflammation) -- beta-glucans in reishi and shiitake seem to help with that. Here is a reading list. 1) Book: "Lyme Disease and Modern Chinese Medicine" by Zhang. ISBN13 9780967721316. The subject is about herbs that are used at a Chinese Medicine clinic in New York to combat Lyme Disease and co-infections (including Bartonella and Babesia). 2) Book: "Healing Lyme" by Stephen Harrod Buhner. ISBN13 9781620550083. It has a super-detailed discussion about how the spirochete Borrelia burgdorferi causes disease, where it attacks, and how it evades the immune system and how it protects itself from antibiotics by waiting in a quiescent state. 3) Book: "Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma" by Stephen Harrod Buhner. ISBN13 9781620550083 4) Go to the ILADS site and get the document “Advanced Topics In Lyme Disease” by Joseph Burrascano MD. It's a guide to which antibiotics are effective and why. Marty Ross MD posts a Lyme Q&A every week on his channel TreatLymebyMartyRossMD. His content is kind of random every week, but you'll see patterns over time. BetterHealthGuy has podcasts with expert guests whom he interviews and those topics are very focused and the information is useful. HalifaxNaturopathicDoctor6227 will answer broad questions about Lyme Disease when you put question in a comment posted to his weekly video. You might ask him, "Does POTS sometimes occur as a sequela of Lyme Disease?" The bad news about Lyme Disease is that patients are being gaslighted, delayed, and denied and the cause of it all is at the national level in the form of bad medical policies, bad insurance polices, and lack of government funding for fundamental research, which can only be described as intentional. While writing this post about what is the best tip to get started healing from Lyme Disease, I thought "Aimee should write this." You will go through a journey of trying things and will be a better judge of what gives the best leverage toward healing. If you document that along the way, you might make a book out of it. I'm hopeful that you will find the path of optimal health, and then lead the rest of us there too. Cheers.
I second this ^ I also have Lyme disease (along with a bunch of other conditions/infections). All the resources you just listed are great and I use as well.
@@decodr-ring I have a couple of friends who have been diagnosed with acute Lyme disease. Both are cognitively “alert”. They can think, read, speak. I believe that is more the norm than not.
@@kellygirl912 Hi Kelly, Thanks for reading the long comment that I originally posted. I'm not the best at writing and get my ideas into words. I should not have implied that cognitive impairment is normal in acute Lyme Disease. Although it is highly statistically probably at 94% of patients having some level of cognitive impairment. The lack of a *normal* symptom profile of Lyme Disease patients is something that befuddles doctors and makes the disease difficult to diagnose in the first place. If you want to know my thinking about brain fatigue in Lyme Disease, which is also called brain fog, or cognitive impairment, then the extreme end of the scale is Dianna at PhysicsGirl channel. Dianna is not known to have Lyme Disease, but she does have the co-infections Bartonella and Babesia which got worse with Long COVID. Not all Lyme patients have every symptom. The symptoms in Lyme Disease are like a collection of statistical probabilities. Different strains of Borrelia cause different severity of symptoms and the strains are regional. I looked around at the research papers that are coming out of MyLymeData and I found this one which is relevant about the topic of what symptoms are statistically likely in Chronic Lyme Disease: "Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey" (2014) by Johnson, Wilcox, Mankoff, Stricker. PMID: 24749006 Chance of *Severe* Symptoms of Chronic Lyme Disease: Fatigue 48% Sleep impairment 41% Joint Pain 39% Muscle Aches 36% Other Pain 34% Depression 34% Cognitive Impairment 32% Chance of Cognitive Impairment by Level of Severity in Chronic Lyme Disease: A) Severe or Very Severe: 32% B) Moderate: 33% to 65% C) Mild or Very Mild: 66% to 94% The list of potential symptoms for Lyme Disease is actually quite long and a sample list can be found on pages 9 and 10 of the paper called "Advanced Topics in Lyme Disease" by Burrascano at the ILADS site. Cheers.
No offense, but you likely do not have lyme disease. (Not to say your symptoms and suffering are not legitimate, just that you have been misdiagnosed) Post treatment lyme disease is real, but is heavily over diagnosed by naturopaths for people with any type of unexplained symptoms. There is alot of misinformation about lyme disease out there. Lyme only spreads via tick bite, and there are not any co-infections with lyme (the chances of getting mutliple infections with a single tick bite happening would be incredibly rare) The testing naturopaths use has alot of false positives. I would only trust the FDA approved one for testing for lyme disease. Be wary of health scams that take advantage of our desperation to feel better. Lyme science and quack watch are good recourses to learn more. Considering you have EDS, that probably IS the route cause. Most people I meet with EDS are very ill and have a multitude of symptoms and diseases. Many of the illnesses you listed do not need an underlying cause, or are the underlying cause itself.
Naturopathic Doctors use CLIA approved laboratory tests for Immunoglobulins. Good labs like Igenex do accurate testing and they can detect multiple subspecies or strains of Borrelia
The Borrelia spirochetes in Lyme Disease consume and metabolize collage. EDS is a disorder related to producing collagen. So, Lyme Disease *should* always be tested for when a patient develops a collection of symptoms at one point in time after living healthy for decades.
@@decodr-ring sorry, it's been a while since I've read about this issue. Upon further reading, the test is approved by the CDC, but the CDC recommends disregard IgM/IgG if the patient has been ill for more than 30 days... Which I'm pretty sure applies to every 'chronic lyme' patient.
Yeah, EDS does explain pretty much all of the symptoms. Often people who have EDS get misdiagnosed with Lyme disease and/or fibromyalgia, because the 13 different types of EDS and the complex nature of EDS make it difficult for most doctors to understand or identify.
@@Dulcimerist Aimee was healthy, then had a sudden down turn eight years ago. An infection would account for that. Her doctor already knows that she has EDS. If she had a blood test and antibodies to Borrelia were found then how is that a misdiagnosis?
I am curious if you have tried healing your gut before? I’m sure you’ve tried everything under the sun to heal but I’m just genuinely curious if you have focused on healing your gut. If so, did you feel any better?
God and His Son Jesus is always #1. AS far as Lymes disease is concerned the best doctor is in Mexico. It is connected to Morgellons disease and this guy has figured it out. Ill go back in my YT history and send you links. I pray you see this comment!!!
@@Truerealism747 I am not sure if you know this alot of people that have chronic pain or illness and of health problems are victim D definition as well as alot of people that are healthy. Alot of people don't get the right amount of things for the food they eat.
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Follow up video coming Monday addressing the comments :)
Both Lyme disease and fibromyalgia are very frequent misdiagnoses for Ehlers Danlos syndrome. Get the antibody tests.
That said, if treatment targeting Lyme disease and parasites improves your health, stick with it if it helps.
The majority of your symptoms are perfectly and adequately explained as secondary to your Ehlers Danlos syndrome, so don't get discouraged if you reach a dead end as you explore Lyme disease and parasite treatments.
@@Dulcimerist Lyme Disease makes EDS worse, because Borrelia metabolizes collagen to make energy, and EDS is a disorder that effects production of new collagen.
@@decodr-ring That's why the antibody tests are recommended, to see if that bacteria is present.
Hello Aimee. I just found your channel as I was searching for new info on POTS. As soon as I heard your story I immediately thought Lyme's disease. And sadly, here is your new video. Lymes is the great imitator. I've had it since 1974!! Please do keep us posted on what you find out.
You are the perfect candidate for the DNRS program. As someone who has suffered with lyme Mast Cell , CFS . Multiple chemical sensitivity. I had many medical emergency situations. Took everything under the sun that only made me bed ridden. UNTIL DNRS .and get life wave x39 stem cell regenerative patces. Good luck god bless.
Jill, I am so happy that DNRS worked for you! I did the program twice with fidelity while I was working a full time, stressful job. I also signed up for the expensive coaching. I discovered that the program does not work, as long as you are continuously exposed to high stress loads. Unfortunately, the program helped only some for me.
@@texasgoddess323It isn't that DNRS doesn't work. It definitely does, but as you have experienced and realized, it doesn't work ALONE. We need to change our entire lifestyle and eliminate chronic stress to heal. Thats foundational for healing. So if we are "doing all the right things" but living in a state of chronic stress daily from work and/or home life, we won't feel much better from any of the programs we do. It requires us to change our entire lives in order to feel better. Sending you all so much love and healing! ❤
@@healwithlaurennicole Hi, Lauren! I wish they had told me that! I came to that conclusion on my own years later after I had quit my job, that you cannot heal while in a stressful state. As I was still working and going through DNRS, I was still symptomatic, so I hired coaches at $200 a session and ppl to help me with tapping. Not one told me that I had to quit my job in order for it to be effective! I was single and supporting myself, so quitting without some type of income created a huge hurdle.
@@texasgoddess323 I'm so sorry, that makes me SO ANGRY that they didn't tell you that and just took your money without ACTUALLY helping you! That is the FIRST thing I tell people in my content, that all of the nutrition, somatic exercises, brain retraining programs, etc are supplemental. They aren't the CORE of us healing. We need to get out of chronic stress if we want to heal, and then use those other things as tools. The problem is people try to use them as the foundation and they don't actually have the true necessary foundation of safety in their nervous system daily because of their stressful lives. That breaks my heart and makes me so angry to think of how many people are desperate to heal and they aren't being given the proper support on their journey from people who claim to have the answers. :( I take a massive holistic lifestyle approach in how I've healed myself and how I've helped the handfuls of clients ive worked with over the years to heal. As you said, it requires that we make massive changes in how we live from day to day. That often includes changing what we do for work and how many hours we work each week, etc. People spend so much money desperately seeking answers on how to heal, when if they understood these things fundamentally, they wouldn't have to make as much of an income to support themselves because their health wouldn't cost them so much trying to fix all these issues and symptoms. The system is backwards and its designed to make money and keep forever customers. They don't want us to figure it all out because then they wouldn't have customers anymore. I work with my clients for 3 months, thats it. Then they go on to continue healing themselves. I've heard from clients years later that say they are fully healed and still can't believe it. Because I help them build that foundation in those 3 months and once they understand the foundation, they are set for life to heal THEMSELVES. they dont need me anymore. And thats how I want it. Anyway, I share as much as I can about all this in my free content on youtube. I hope you'll check it out if youre interested! Thanks for the great convo!
Hi Aimee! I have been watching your videos for a while and I am so sorry to hear about another illness diagnosis. For what it's worth (and I know everyone is different), but I saw a holistic doctor about 9 years ago, long before I had any symptoms of fibro, POTS, etc. It was mainly because I was feeling depressed but didn't want to take antidepressants. They also told me I had a parasite and had me buy a bunch of supplements and go on a very strict diet. I technically felt better, but it was a never ending money pit of buying supplements and other things that aren't covered by health insurance. I gasped out loud when you mentioned a parasite because I didn't even have any physical symptoms at the time and they diagnosed me with one, too! Not to sound skeptical, but I would just keep that in mind as you progress with this treatment plan.
I totally understand this! I was burned by a holistic doctor years ago, and was charged thousands and thousands of dollars. It felt like a scam when I look back. My husband especially was very skeptical of this new doctor because of our past experience. I was sceptical too.
I didn't explain the real reason why I trust him, because it's personal and I didn't want to share it on the internet. But I do trust this doctor! 😊
And changes are happening with this treatment!
@@Aimee_Esther The FoodMarble detected Hydrogen and Methane, right? Those are very likely produced by bad gut parasites -- something like Blastocystis or Entamoeba, maybe Candida also. The "gut parasites" diagnosis from your current doctor seems to align with the facts.
In addition to all the things, I have Lyme disease as well. Thankfully diagnosed here in Europe, and as soon as I tested positive, I was given immediate treatment. Also had the huge telltale bullseye on my thigh. Treatment is super doses of a cocktail of antibiotics. Herxing is a painful reaction to these antibiotics meaning muscle cramps, fatigue, etc. It caused me to writhe and bite my pillow. But I'm thankful I wasn't seeking a diagnosis in Canada as at the time even the infectious diseases unit didn't believe in Lyme. Insane.
Even if one tests negative, it may not mean anything because spiroketes leave the bloodstream and hide out in organs where they can be undetected in bloodwork.
I strongly recommend seeing a Lyme specialist to ensure you are treated accurately. Some suffer needlessly and cannot care for themselves, though that's nearly always due to not being diagnosed for years. I have done a LOT of research on this.
Even though treated quickly, I have chronic Lyme, probably as I have so many other illnesses.
Frustrating to deal with doctors about yet ANOTHER issue, isn't it? Sheesh.
One day at a time. Heck, one hour or minute at a time! 😊
Thank you for sharing all that. It helps to know someone else understands. I have been doing a lot of research and feel hopeful that these answers will help bring some relief, but I understand it could still be chronic.
@Aimee_Esther I pray you won't get to the chronic stage...it's very likely you won't.
Thankfully we have spots of joy which keep us pushing and pushing. Some days I give up. But the next day (hour) may be a little bit better. You know what I mean. Imagine a full 24 hours pain free and fully rested to do what you like without repercussions the next day. That would be such a blessing!
You should listen to Ren. He is a multinstrumentalist. He was misdiagnosed for almost 10 years. He has Lyme and the things he went through is crazy. He discusses his medical issues in songs and he also does uplifting songs. His music has helped me greatly! Worth the listen
Hi Ren by Ren
I wish you the very best in your journey and pray you stay feeling a little better.
I also want to say I have missed your videos so much as you make me feel less alone in being chronically ill. I hope you can still do these videos even if less often but if you can’t I wish you all the best and continued support from your community.
Maybe the food poisoning could directly trigger POTS. Pregnancy, operations, viruses and accidents can all trigger POTS. So maybe food poisoning could trigger it as well. The EDS makes POTS more likely.
I’m confused. According to the medical school at University of Pennsylvania you can only get Lyme disease if you are bitten by an infected tick. I got bit by a tick and had to have preventative treatment for Lyme disease and that is what I was told by my treatment team. What does food poisoning have to do with Lyme disease if it’s caused by a tick bite?
About one third of Lyme Disease patients were never bitten by a tick and never go the bullseye rash. Other routes of infection exist but the NIH and CDC are not funding any research to find out what those might be.
Food poisoning has nothing to do with Lymes disease. I’m guessing she may have been misdiagnosed?
@@kellygirl912Quiescent Borrelia can re-emerge as a dominant cause of illness and many varied symptoms after any significant stressor.
@audreybell2878 I have Lyme which indeed can only be contracted by an infected tick bite, according to all the specialists I've seen at Lyme clinics in Europe where they are much more technologically advanced in the field than most places.
You can definitely only get Lyme disease from an infected tick which leaves a tell tale bullseye mark on the skin - which can be the first indicator - it cannot be caught any other way and certainly not from food poisoning - this is getting ridiculous at this point
Not to add another thing to your plate but I feel like you should do an ERMI test on your home and look into a possible CIRS diagnosis. You explain it perfectly the fatigue the shocks everything
Yes, the same genetic haplotype(s) that can make you more susceptible to getting sicker from Lyme can also make you more susceptible to mold illness (CIRS). The two go hand in hand. Living in a moldy house brought my previously misdiagnosed and untreated Lyme out of hiding. The ERMI test is the best test at the lowest cost to determine the mold levels in a house. It’s a dust sample test.
The least expensive test for mold illness is the VCS test. It’s a visual contrast sensitivity test that you can take at home on your computer. It’s free technically but if you donate 15$, they let you keep the detailed results so that you can show a doctor later. It’s worth the 15$. Google search “VCS test CIRS mold” and it will be the top result.
Envirobiomics is a great lab if you want to order the ERMI mold test.
Some good resources for mold are:
Moldfinders podcast with Brian Karr, on Spotify or TH-cam
BetterHealthGuy podcast on Spotify or TH-cam. He also is knowledgeable and interviews experts on Lyme and many relating topics.
The CIRS Group TH-cam channel, with 2 women…I forgot their names but they give very succinct information, highly recommended.
Change the Air Foundation podcast on TH-cam
Websites/Blogs:
Mold Help For You
Surviving Toxic Mold
Mold Free Living
Surviving Mold
@Aimee_Esther Yes, the same genetic haplotype(s) that can make you more susceptible to getting sicker from Lyme can also make you more susceptible to mold illness (CIRS). The two go hand in hand. Living in a moldy house brought my previously misdiagnosed and untreated Lyme out of hiding. The ERMI test is the best test at the lowest cost to determine the mold levels in a house. It’s a dust sample test.
The least expensive test for mold illness is the VCS test. It’s a visual contrast sensitivity test that you can take at home on your computer. It’s free technically but if you donate 15$, they let you keep the detailed results so that you can show a doctor later. It’s worth the 15$. Google search “VCS test CIRS mold” and it will be the top result.
Envirobiomics is a great lab if you want to order the ERMI mold test.
Some good resources for mold are:
Moldfinders podcast with Brian Karr, on Spotify or TH-cam
BetterHealthGuy podcast on Spotify or TH-cam. He also is knowledgeable and interviews experts on Lyme and many relating topics.
The CIRS Group TH-cam channel, with 2 women…I forgot their names but they give very succinct information, highly recommended.
Change the Air Foundation podcast on TH-cam
Websites/Blogs:
Mold Help For You
Surviving Toxic Mold
Mold Free Living
Surviving Mold
@@megangammon9777 Yes, the same genetic haplotype(s) that can make you more susceptible to getting sicker from Lyme can also make you more susceptible to mold illness (CIRS). The two go hand in hand. Living in a moldy house brought my previously misdiagnosed and untreated Lyme out of hiding. The ERMI test is the best test at the lowest cost to determine the mold levels in a house. It’s a dust sample test.
The least expensive test for mold illness is the VCS test. It’s a visual contrast sensitivity test that you can take at home on your computer. It’s free technically but if you donate 15$, they let you keep the detailed results so that you can show a doctor later. It’s worth the 15$. Google search “VCS test CIRS mold” and it will be the top result.
Envirobiomics is a great lab if you want to order the ERMI mold test.
Some good resources for mold are:
Moldfinders podcast with Brian Karr, on Spotify or TH-cam
BetterHealthGuy podcast on Spotify or TH-cam. He also is knowledgeable and interviews experts on Lyme and many relating topics.
The CIRS Group TH-cam channel, with 2 women…I forgot their names but they give very succinct information, highly recommended.
Change the Air Foundation podcast on TH-cam
Websites/Blogs:
Mold Help For You
Surviving Toxic Mold
Mold Free Living
Surviving Mold
You Are The Healer . o r g
@@megangammon9777 I just realized I should clarify, Megan you probably already know all the CIRS info, my comment is more for others who may be curious if mold is contributing to their symptoms.
Hey, here for you. Feel free to reach out anytime! ❤
Thank you for sharing Aimee. I always appreciate your videos. I'm sorry to hear about the new diagnosis, but I always have Faith that you are going to get better. My healing journey has been a long haul, but slowly improving.
Thank you!!
Wow! So excited to see where this goes!
I'm currently under treatment for Lyme Disease. It's caused by a tick bite.
Question: I just watched some of your older videos where you were cleaning and handling babies, and it got me to think to ask: How did you handle chronic illness and pregnancy? I am a sufferer myself and being afraid of getting pregnant not knowing if I can handle added discofmort an pain from a pregnancy, or if it would be safe for the baby. How was it for you?
I care & miss ya! Hoping to be able to join you in your community eventually (budget allowing).
Having a hard flare day here in Florida. 🤢😪
My holistic therapist found bacteria in my body-mostly my gut, and treated it with tinctures and now I can actually handle eating. It made my digestion tolerable. If I ever got sick from the supplements/tinctures my doctor would lower the dose. You might have to ask him to lower your dosage or try a different medicine. My doctor tested for tons of bacteria (including testing positive for H-pylori)and that’s how it was found. My mom had an African parasite from eating food in Africa that she had for years and American doctors don’t even test for it, even though it slowly eats your organs till it’s too late! Her digestive system is so much better now.
The little things add up. Now that I have more diagnosis’ and am taking medication my ME/CFS hasn’t been so severe and I’m not crashing. I’m still bedridden 95% of the day but when I do go do something I don’t crash. 💛
So sorry you've been though so much. But thanks for sharing!! It helps to hear from others who have experienced it!
Dear Aimee I am so sorry to hear this. I am not sure if you are aware of this but do you think you could potentially have cervical instability have you been tested for it
That's what I'm thinking too. I'm currently being treated by Dr Hauser and I'm not completely better but I am am not near as disabled as I was before my upper cervical chiropractor and Caring Medical 🎉🙏🙏🙏 I had been diagnosed with everything from severe anxiety to FND and chronic fatigue. But nobody wanted to acknowledge that these things PLUS the heart attack symptoms, tremors, twitching, seizure like episodes, digestion issues, dizziness, light and sound and vibration sensitivity and much more was coming from my neck and I knew it was lol bc I didn't have anything except fatigue and occasional headache before I twisted my neck, bumped my head and then got really disabled after I did a pull-up on the ladder at the wave pool. Especially if she has EDS she most likely has cervical instability ESPECIALLY since the adjustment won't hold. Mine wouldn't either until I started prolotherapy and I still do get atlas adjusted but I can go much longer with less symptoms now between adjustments
I missed your videos!
Lyme, long Covid, etc., seem like one and the same, or at least similar expression of immune system overdrive. these conditions often go combined, I myself have POTS/MCAS, technically PCOS I guess (had one cyst so far, but the hormonal profile is there), neuralgia, arthritis, uveitis, SIBO, you name it...
neurodivergence, in your case ADHD, and a specific genetic setup is what predisposes people to have these chronic problems. ticks are my big fear, because I know that with my setup and existing conditions, I am guaranteed to get Lyme.
And we're prone to mould I have heds fybromyalgia cfs years and decades I grew up in a farm so may have been bitten but autism us the reason it would cause the problem s autism mcas
How did you get an accurate diagnosis for Lyme? I was told there is only one lab (in California) that does a full Lyme workup.
Igenex is a good lab.
@@inthelymelife4390 that is the one I was told about. I have t been able to do it because it is OOP. No insurance taken.
Apparently mold flicks up a positive.lyme test so worth looking at
@@Truerealism747 interesting; I wonder why?
@@kellygirl912 it's on here on mold mycotoxins it's because of how the immune system reacts the same to invaders
Hi Aimee, Lyme, wow! So you asked for tips. Where to start?
The good news is that cognitively you are doing better than many people with acute Lyme Disease. So your point of leverage is your ability to think, read, integrate information. If you pay attention to what works for you and send it back out to the world in your videos, then talking about your Lyme journey will gain you lots of Lyme friends.
Structurally, did you know that the bacteria in Lyme Disease metabolizes (breaks down) collagen to make energy? EDS is a disorder in creating new collagen. So EDS + Lyme Disease is a combination that will be benefited by supplementing with collagen, like chicken broth or pho ga soup or pho bo soup.
Energetically, the fatigue in Lyme Disease seems to be related to damage to mitochondrial membranes. So supplementing with the goal of supporting the health of the mitochondrial membranes is beneficial. Also, good quality and good amounts of B Vitamins (B1, B3, B6, B12) can kick-start the Krebs Cycle for better energy production within the mitochondria.
One idea for a philosophical frame about Lyme Disease and how you should approach healing from it is "Gu Syndrome with Dr. Heiner Fruehauf" which is episode 116 of BetterHealthGuy show. A thumbnail summary is this: healing from Lyme requires a point of leverage to work against. My feeling is that the point of leverage is the mitochondria, where energy is liberated in cells. A second lever is to balance the Th1 and Th2 expression of the immune system (that is, nudge the immune system to stop causing brain inflammation) -- beta-glucans in reishi and shiitake seem to help with that.
Here is a reading list.
1) Book: "Lyme Disease and Modern Chinese Medicine" by Zhang. ISBN13 9780967721316. The subject is about herbs that are used at a Chinese Medicine clinic in New York to combat Lyme Disease and co-infections (including Bartonella and Babesia).
2) Book: "Healing Lyme" by Stephen Harrod Buhner. ISBN13 9781620550083. It has a super-detailed discussion about how the spirochete Borrelia burgdorferi causes disease, where it attacks, and how it evades the immune system and how it protects itself from antibiotics by waiting in a quiescent state.
3) Book: "Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma" by Stephen Harrod Buhner. ISBN13 9781620550083
4) Go to the ILADS site and get the document “Advanced Topics In Lyme Disease” by Joseph Burrascano MD. It's a guide to which antibiotics are effective and why.
Marty Ross MD posts a Lyme Q&A every week on his channel TreatLymebyMartyRossMD. His content is kind of random every week, but you'll see patterns over time.
BetterHealthGuy has podcasts with expert guests whom he interviews and those topics are very focused and the information is useful.
HalifaxNaturopathicDoctor6227 will answer broad questions about Lyme Disease when you put question in a comment posted to his weekly video. You might ask him, "Does POTS sometimes occur as a sequela of Lyme Disease?"
The bad news about Lyme Disease is that patients are being gaslighted, delayed, and denied and the cause of it all is at the national level in the form of bad medical policies, bad insurance polices, and lack of government funding for fundamental research, which can only be described as intentional.
While writing this post about what is the best tip to get started healing from Lyme Disease, I thought "Aimee should write this." You will go through a journey of trying things and will be a better judge of what gives the best leverage toward healing. If you document that along the way, you might make a book out of it.
I'm hopeful that you will find the path of optimal health, and then lead the rest of us there too.
Cheers.
I second this ^
I also have Lyme disease (along with a bunch of other conditions/infections). All the resources you just listed are great and I use as well.
@@decodr-ring I have a couple of friends who have been diagnosed with acute Lyme disease. Both are cognitively “alert”. They can think, read, speak. I believe that is more the norm than not.
@@kellygirl912 Hi Kelly, Thanks for reading the long comment that I originally posted.
I'm not the best at writing and get my ideas into words. I should not have implied that cognitive impairment is normal in acute Lyme Disease. Although it is highly statistically probably at 94% of patients having some level of cognitive impairment. The lack of a *normal* symptom profile of Lyme Disease patients is something that befuddles doctors and makes the disease difficult to diagnose in the first place.
If you want to know my thinking about brain fatigue in Lyme Disease, which is also called brain fog, or cognitive impairment, then the extreme end of the scale is Dianna at PhysicsGirl channel. Dianna is not known to have Lyme Disease, but she does have the co-infections Bartonella and Babesia which got worse with Long COVID.
Not all Lyme patients have every symptom. The symptoms in Lyme Disease are like a collection of statistical probabilities. Different strains of Borrelia cause different severity of symptoms and the strains are regional.
I looked around at the research papers that are coming out of MyLymeData and I found this one which is relevant about the topic of what symptoms are statistically likely in Chronic Lyme Disease:
"Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey" (2014) by Johnson, Wilcox, Mankoff, Stricker. PMID: 24749006
Chance of *Severe* Symptoms of Chronic Lyme Disease:
Fatigue 48%
Sleep impairment 41%
Joint Pain 39%
Muscle Aches 36%
Other Pain 34%
Depression 34%
Cognitive Impairment 32%
Chance of Cognitive Impairment by Level of Severity in Chronic Lyme Disease:
A) Severe or Very Severe: 32%
B) Moderate: 33% to 65%
C) Mild or Very Mild: 66% to 94%
The list of potential symptoms for Lyme Disease is actually quite long and a sample list can be found on pages 9 and 10 of the paper called "Advanced Topics in Lyme Disease" by Burrascano at the ILADS site.
Cheers.
No offense, but you likely do not have lyme disease. (Not to say your symptoms and suffering are not legitimate, just that you have been misdiagnosed) Post treatment lyme disease is real, but is heavily over diagnosed by naturopaths for people with any type of unexplained symptoms. There is alot of misinformation about lyme disease out there. Lyme only spreads via tick bite, and there are not any co-infections with lyme (the chances of getting mutliple infections with a single tick bite happening would be incredibly rare)
The testing naturopaths use has alot of false positives. I would only trust the FDA approved one for testing for lyme disease. Be wary of health scams that take advantage of our desperation to feel better. Lyme science and quack watch are good recourses to learn more.
Considering you have EDS, that probably IS the route cause. Most people I meet with EDS are very ill and have a multitude of symptoms and diseases. Many of the illnesses you listed do not need an underlying cause, or are the underlying cause itself.
Naturopathic Doctors use CLIA approved laboratory tests for Immunoglobulins. Good labs like Igenex do accurate testing and they can detect multiple subspecies or strains of Borrelia
The Borrelia spirochetes in Lyme Disease consume and metabolize collage. EDS is a disorder related to producing collagen. So, Lyme Disease *should* always be tested for when a patient develops a collection of symptoms at one point in time after living healthy for decades.
@@decodr-ring sorry, it's been a while since I've read about this issue. Upon further reading, the test is approved by the CDC, but the CDC recommends disregard IgM/IgG if the patient has been ill for more than 30 days... Which I'm pretty sure applies to every 'chronic lyme' patient.
Yeah, EDS does explain pretty much all of the symptoms. Often people who have EDS get misdiagnosed with Lyme disease and/or fibromyalgia, because the 13 different types of EDS and the complex nature of EDS make it difficult for most doctors to understand or identify.
@@Dulcimerist Aimee was healthy, then had a sudden down turn eight years ago. An infection would account for that. Her doctor already knows that she has EDS. If she had a blood test and antibodies to Borrelia were found then how is that a misdiagnosis?
I am curious if you have tried healing your gut before? I’m sure you’ve tried everything under the sun to heal but I’m just genuinely curious if you have focused on healing your gut. If so, did you feel any better?
Yes I've tried healing my gut every year for 8 years 😅 so far no luck!
God and His Son Jesus is always #1. AS far as Lymes disease is concerned the best doctor is in Mexico. It is connected to Morgellons disease and this guy has figured it out. Ill go back in my YT history and send you links. I pray you see this comment!!!
How did he diagnose the Lyme disease ?
😢
You mentioned it earlier in a different video and I thought please tell me she has brain fog and said that by accident.
I'm never going outside
You are not alone on that.
I have Lyme disease but do go outside. Nature is what motivates me and brings me joy like nothing else. Please don't allow it to dictate your life!
You have to you will get low vitamin d and host other illnesses from the light depreciation
@@maslina4567do you have heds fybromyalgia
@@Truerealism747 I am not sure if you know this alot of people that have chronic pain or illness and of health problems are victim D definition as well as alot of people that are healthy. Alot of people don't get the right amount of things for the food they eat.