I'm SO glad I found your channel! You are one strong woman, and you seem to be so positive about your healing and everything going on. I have been chronically ill since 2009. I was diagnosed with "MCAS," "chronic idiopathic anaphylaxis and angioedema," "Complicated migraines," "seizure disorder," "tremors," "scoliosis (as an adult)", "brain aneurysm", "tachycardia," and the list literally goes on and on and on and on. I thought I was going to be sick for the rest of my life, or die, so I can relate to that feeling....I was almost misdiagnosed with MS (my mom and sister have it, but my sister was also diagnosed with lyme....I think they both have lyme!), so I see where you are coming from and agree with you. I believe all of these things could be related to the chronic lyme for sure...but like you said, who knows? But I bet... I wish chronic lyme upon no one ever! Thank you for sharing your story. Sorry for rambling 😆❤
I think it's like I have heds which predisposed me to being vulnerable and never recovering from trauma/infections etc that a "normal" person would've healed from. It's possible on Earth 2 if I avoided all of this I'd be 1000000% more functional than I am today
It’s all very interesting to think about-so many unknowns! I’m really sorry that you’ve struggled so much! I hope you can find ways to improve quality of life. ❤️
It does sound a bit far fetched that you could be perfectly healthy one day, hiking and being very physically active and then all of a sudden this disease pops up out of nowhere. It sounds more like Lyme + to me as well. I read Chronic, great book. After 4 years of treatment and a lot of my symptoms resolved family still tries to tell me I may have RA, because I cannot get rid of my joint pain. Even after antibiotics have helped it but came back. And then I ask about my other symptom we can’t get rid of, traveling nerve pain, and they cannot explain that one. It drives me crazy why people cannot accept my Lyme+ diagnosis. I’m glad you are seeing a Lyme dr and not just accepting the hEDS Diagnosis. If I had just accepted my RA diagnoses I may not be alive right now. Keep fighting, we know our bodies better than doctors do.
Thank you so much for sharing your thoughts! I'm glad I'm not the only one considering these things. I'm really sorry to hear that you're still struggling with joint pains/symptoms. Have you heard of the carnivore diet? I''m currently doing it and seeing positive results. I very often hear of people managing their joint pain or arthritis with this way of eating. This is the first video I watched about it that got me interested:ruclips.net/video/N39o_DI5laI/видео.html Anyways, just thought I'd throw that out there, disregard if you'd like, haha. Wishing you the very best in your journey! :)
YES To this video! I have very similar feelings around this to you. my background is super similar to yours with hEDS diagnosis, CCI, tethered cord, Lyme , pots etc I guess for me at the moment where I see things is there is very likely genetic predisposition, but I think environmental triggers then push us over the edge into disease. for me we are just starting treatment for heavy metals. There are studies showing infections can increase things like MMPs, which can break down connective tissue. I think heavy metals, mould, infections and I’m sure many others can increase mast cell activity, releasing further mediators that can break down connective tissue and cause a lot of inflammation and tissue damage. I think there’s also a little bit showing heavy metals can cause disordered collagen synthesis. (i’m sure you know all this :) ) I think as you have discussed, these are such complex issues and when one System is affected many more parts of the body’s systems go out of balance. Thank you for all the great videos you do sharing your journey, and I hope 2022 is a great year for you with many more improvements! 💛
Thanks for sharing some of your thoughts on this, Rebecca! It's so great to know I'm not the only one considering this. I think for me, the biggest questions is can the damage done from whatever "trigger" (whether it be chronic infection, mold, diet, environmental factors, pregnancy, etc) be reversed? And I have hope/ a hunch it can be. 💚 I think there is potential danger in telling a patient that they have an "incurable disease" when they really don't know that, because they often stop looking for healing. It doesn't make sense to me that relatively healthy people get very sick all the sudden and then are told they'll never get better! Of course, I'm no expect but I keep hope in healing. Wishing you the very best with whatever treatments you are doing! I hope this is a great year for you. :)
Hi Rachel, thank you for your videos :) Have you ever come across a podcast called The Chronic Comeback? It's hosted by a guy who has Lyme disease and interviews people who either have that or other diseases and have gotten better. I really liked one episode that was posted recently about a woman named Heather who had an EDS diagnosis (if I remember correctly), CCI etc and was now symptom free, I personally found it very inspiring. CFS unravelled is another one where you find some people who healed from Lyme. Anyways, I thought it might be helpful in case you didn't know those. I really hope you keep making progress and wish you the best in your healing journey ♡
Hi there! Thank you for your kind and thoughtful message. I haven't heard of the "chronic comeback", but it sounds really interesting. I'll check it out! I keep hope that there is a way to heal and reverse damage done from infections, etc. It may be incredibly hard to find a way, but nobody has truly "tried everything" like I hear all the time. I think there's danger in telling patients that they have an "incurable disease" when in reality they don't know that. Wishing you the very best in your own journey! ❤️️
Elizabeth, you may be right about your situation. Stick to your course and perhaps the conditions will gradually resolve themselves. It seems to me that doctors are trained to provide medications based on symptoms, but they are clueless as how to heal. They attempt to treat the symptoms, and that's all they do, and frankly much of their advice I have now discarded. Discovered you only a little over a week ago. Keep up the good work!
Thank you for the video. I think it’s important to consider this. My daughter had syrinx and tethered cord in her cervical and thoracic region. She did not have chairi. She developed influenza AH3N2 and never recovered. Prior to her infection her tethered cord and syrinx were not symptomatic and only monitored with mris. After the infection she developed symptoms related to her tethered cord such as gait changes, unlilateral leg pain and foot changes. Additionally she developed pots, and MCAS and is borderline for Ed’s diagnosis. She now has a diagnosis of me/cfs and while I think her tethered cord causes symptoms…I think it was the infection triggered the connective tissue and created spinal cord inflammation and therefore created her disorders/symptoms. I have lupus and my mom had RA. However she is negative for autoimmune diseases. She was often sicker than the rest of us with flu’s ect. So I think her immune system is messed. She was a competitive dancer before hand and now chair ridden. I too have done a lot of research and also recognize that we are all different but in her case I think the infection is what is keeping her so sick. She likely will be affected by her spinal cord for life…and possibly cci but I am happy there long covid research as I think it may provide possible treatments to help improve her quality of life versus surgery if my theory is correct. She has has tethered cord surgery but it has since retethered). So I plan on waiting to try what ever treatments they come out with for long covid/mecfs before another surgery. I am hoping I am right as it would be such a less drastic approach than surgery but it may come to that. I do not know. Regardless these diseases are horrible and I feel for all that suffer them. Thank you for being vulnerable and putting your thoughts out there. I think it’s important to take all ideas as possible causes with a multisystem disease.
Great video, thank you for sharing with such honesty. I too agree that infections can induce connective tissue diseases. I went from fully healthy and active (even running a 1/2 marathon) to a wheelchair from 'EDS.' It's baffling to me how this could happen. Mine got really bad after pregnancy. I was extremely 'double jointed' as a kid and even had hand braces made during middle school (but no connective tissue condition was diagnosed at the time). My brother is also 'double jointed' and at 50 can drop and do the splits and all kinds of crazy human tricks. Because he's had so many surgeries for his tendons and ligament, and my high beighton score as well as co-morbidities I do think I have EDS, or whatever anyone wants to call this complex bundle of chronic conditions. But I do wonder if my brother and I were genetically predisposed and perhaps environmental factors activated it (including infections). Whatever I'm labelled, I still feel like I will heal. Maybe because the first 44 year of my life I thought I was normal and the last 4 just don't seem to make sense...but I choose to keep this optimism forever. Cheers to never giving up.
Thank you so much for sharing a part of your journey! Those are all really good thoughts. My lyme doctor says "where there's life there's hope" and I love that reminder. I think keeping hope for healing is so important! And what I really wonder is if we're able to reverse the damage done after "triggering" the EDS symptoms (however they may come about). I have a hunch there is a way, I think the body is better at healing than we may think! ❤️️ It' just can be very hard to find healing. Cheers to never giving up, yes! Wishing you the very best in your journey!
I have hEDS, but was also super fit in my younger years. This is a great video. People don’t understand that genetics and genetics tests only indicate what you may be predisposed to, they don’t say for sure what your body is doing because it all depends on what genes are active. I personally believe that genes can “wake up and go to sleep” depending on external factors. It’s totally possible that you have genetic markers for hEDS and the Lyme “woke up” those genes. And treating the Lyme and other condition can help the hEDS to calm back down. I say that because my hEDS symptoms definitely vary with how my overall health is doing. It also possible you don’t have hEDS - you know your body best. I totally think infections can trigger or exacerbated things like hEDS. I’m getting ready to do a parasite cleanses to help with my symptoms. You did a great job on the video. I agree that too many hEDS patients think they are doomed because of the diagnosis and don’t realize that just because something has a “genetic” marker does not mean that it’s not treatable. Whether you have HEDS or not isn’t necessarily important except to know your body’s tendencies. But hEDS is totally something you can overcome if you can find the right puzzle pieces. Haven’t gotten there yet, but have seen a lot of victories this past year. It just makes me sad to watch all my EDS friends who have just accepted where they are at. So glad you are pushing for answers. God bless you on your journey.
Hi Laura! Thank you so much for sharing your thoughts! I too have thought about the idea/potential of genes being altered (aka turned off/on like you said) due to infections, lifestyle changes, stress, diet, environment, etc, etc. I'd like to believe there's a way to reverse the damage done. ❤️️ What I really worry about is how people are told that they have an incurable disease when they really know next to nothing about it. I think that's a dangerous thing to tell a chronically ill patient, with any condition really. Just because it's unknown doesn't mean incurable. There are so many people that I've seen go into remission from many chronic illnesses. I think our bodies have a strong ability to heal, it's just very hard to find the right mode of healing as we're all so different! Thanks again for your thoughts. Wishing you the very best on your own journey!
@@HealingWithRachael Yes, totally! And even if something is not curable does not mean it's not "treatable." It's so sad that doctors don't dig for answers and that people blindly believe that there is nothing they can do to improve their health just because of a diagnosis. I just take my hEDS diagnosis as a guide for what my body needs and not a life sentence. Like you said, doctors need to be encouraging people to find answers, not just write things off as incurable. Keep up the good work. I'm sure you are being an encouragement to so many.
I love this comment. When I found out about this stuff I looked it up and the community online was really negative about anything to do with getting better from it. I believe the same about genes but they were saying it is a dominant gene so I dont know if that makes it different or not able to turn off but I hope we can. I'm pretty sure there might be a lot of environmental things causing this display of symptoms as some stuff helps some heal and does nothing for others
Yes to all of this! This has been my hang up these last 4 years of failing health. I have all the “labels” as well. My EDS doctor said that my reactivated Epstein Barr gave my already stretchy ligaments (but that were holding on well so far) and extra tenderizing affect from the viral constants load in my bed. She said it kicked my collagen disorder into high gear. I have always been super flexible and random health challenges but. I thing since couldn’t handle or thought out of the norm. I believe hEDS is a true diagnoses but they will need to select their trial participants wisely because chronic infections will appear to be in the hEDS category added well. I love this video and I love that you made it and are being vocal. There needs to be way better and the origin care for all us “sickies” that present in the same fashion.
Thanks for sharing your thoughts! In all my years of being sick, almost everyone I've met with EDS has a similar story of something "triggering" their illness to get infinitely worse. What I really wonder, is if there's a way to reverse that damage. I have a hunch/hope that there is a way.💚The body has such a strong ability to heal, it can just be incredibly hard to find. I really do think there's danger in telling patients that they have an "incurable disease" when they actually don't know that for sure. 😢 Anyways, those are just some of my thoughts and I want to keep sharing in case it helps anyone! Wishing you the very best in your own journey!
I’ve had complex health issues for the last 3 years following chronic stress / trauma. At one point I was convinced I had chronic Lyme but you can’t get a diagnosis in the UK. I was diagnosed with CFS & fibromyalgia before recently being diagnosed with hEDS at 30 years old. I had already made some significant improvements using mind-body nervous system regulation before I got this diagnosis and so I refuse to believe that hEDS means I’m going to always be sick. I didn’t always have physical symptoms. I believe the hEDS instability contributes / connects to anxiety and nervous system dysregulation. I see it as one piece of the puzzle but I won’t let it hold me back from believing I can fully heal. Irene Lyon has a great recovery story on her channel from someone who healed their conditions including hEDS by repairing the nervous system. I now believe this is the key to healing. Thank you for sharing your story and good luck on your healing journey ❤❤
I absolutely agree with you!! If you look at some of my more recent videos you’ll see that I’m healing through brain retraining and an animal-based diet. The nervous system is the key to the body’s innate ability to heal! So happy you are making improvements already ❤️❤️
@@HealingWithRachael yes I thought you were also on a similar path as I have been listening to your visualisations 🥰🥰 I also believe an animal based diet is important after previously being vegan for 4 years before I got sick. Thank you so much!!
This resonates with me so much! I was a super active dolphin trainer, moved to Colorado and was backpacking/ hiking 14ers. I was in the best shape of my life. Then suddenly fell apart with eds, cci, tethered cord etc. I believe I have always had eds since I've always been incredibly hypermobile. But something definitely bought out my issues....I think my mom has eds too but she never got sick. I believe that viral infections can open Pandora's box for us with underlying connective tissue disorders. Many covid long haulers are finding out out they have eds so hopefully they will want to research this soon 🤞
Wow, a dolphin trainer, that is so cool! That was my dream job when I was a kid 😅 Thanks for sharing a piece of your story. I'm so sorry to hear of all you've been through and lost with your chronic illness experience. My biggest question is if the damage done from the "trigger" for worsening "EDS" can be reversed. And I really would like to believe and keep hope that it can be. 💚 I worry that telling people they have an incurable disease when they really don't know that causes people to lose hope and stop looking for healing. Of course, that's just my opinion/thoughts! Wishing you the very best in your journey!
@@HealingWithRachael I couldn't agree more! Hope is what gets me through the day so I have to believe that my body can heal. I mean people suffer from being completely paralyzed from spinal cord injuries and can heal from that, why not us? I've also been searching for a more holistic approach lately too and I'm going to the Spero Clinic next month. Also thinking about Caring Medical too since im local. The hardest part is having to choose the right path when we are left to do all this research. I wish you the best on your journey! 💜
Hey Rach, I think your approach is really good. I’m coming up on 30 years of moderate to severe illness (plus being sick before that most of my life just not bad enough to get any diagnosis)….. I’ve learnt that increasingly doctors aren’t good at seeing the body as a whole and I really do think various aspects impact other parts and it has concerned me that many doctors simply treat symptoms (without necessarily actually fully understanding the drugs or therapies they prescribe!) and don’t seek to heal! Can everything be healed? We don’t know (other than God giving a miracle which he absolutely can do!)…. But I think when the doctors stop trying that’s a problem (note I think taking a rest from medical stuff etc can be very beneficial, so not talking about that or palliative care etc)….. but I do think that many have stopped looking to assist and function better or improve underlying causes of things that make us unwell. Also, I think that while chronic Lyme (or chronic infection of some type coming under that banner) is absolutely valid and makes sense, it doesn’t negate the hEDS diagnosis (although I also think genetic testing for other forms of ESS doesn’t occur enough and many people actually have a different type of EDS but a whole other discussion 😉)…. I think you can have both! Like lots of people with eds function actually quite well all things considered and they wouldn’t even know they had that illness until another relative becomes sick etc. I don’t think it has to be one or the other. I do think that focussing on things that can assist overall is a good thing irrespective of what the “label” is. I too have been looking more and more into other alternatives for improving or healing aspects of my life that are impacted by environmental issues and trauma issues etc. I don’t know how much it will or won’t impact my eds (for me it fits but I also got mecfs immediately following a bad bout of glandular fever so it’s been a long road over 3 decades of learning new things all the time and unlearning other things that we took for granted but perhaps shouldn’t have!) but I do honestly think that the things I hope to do will improve functional capacity for me irrespective of eds and co-morbid conditions. Part of this is because I’m doing the work anyway in checking and learning (which I think is God’s leading) and then run things past trusted health professionals as best I can. I think people dismiss anything that’s not allopathic medicine because it’s not what they’re used to, even though most of these therapies have been used for a much longer time. When I was diagnosed with mecfs, much of the search for what was wrong stopped…. But they existed and I I absolutely agree with you that we shouldn’t automatically stop when we get one certain diagnosis. Like I said, that diagnosis may be absolutely valid regardless, but doesn’t mean other things aren’t occurring also and that we shouldn’t attempt to heal those things! Finding the balance I think is a good thing 😊. Oh and I was going to say, you can see five different specialists with the same symptoms and get five different but valid diagnosis’! That’s because they see much through their own lens of training and increasing less able to see an overall connective picture between symptoms and different body systems!! I hope I’m making sense because I’m really tired. If I don’t, please feel free to say so and check or ask etc!!
Hi Telle, thank you so much for sharing some of your thoughts and journey. It's really nice to know I'm not the only one considering these things. Honestly I think its dangerous that doctors are telling patients they have an "incurable disease" or that they will always have a certain condition because they really don't know that. It causes people to lose hope in healing when it very well may be possible. Like you said, there's no way to know for sure but I think it helps so much (even mentally) to keep having hope and keep searching for healing. 💚 I'd like to believe that the damage done by chronic infections/triggers that make people very ill can be reversible. I think the body's ability to heal is very strong. Personally, I think our recent shift in diets to ultra-processed foods, seed oils, and more grains is largely contributing to chronic disease. Not fueling our bodies properly makes it very difficult to heal and more vulnerable to chronic illnesses. Of course, those are just my thoughts. I know its all just speculation. Wishing you the very best in your journey!!
I’m right there with you, I’m 66 and have chronic pain for 30 years, I was able to self medicate as doctors don’t know anything, I’ve been to them all, but since Covid I haven’t been able to get my pain pills from Canada so my pain has gotten worse. I haven’t been diagnosed with ehlers danios syndrome but I know I have it for sure because everyone in my family has some of the symptoms, and I think every generation can get worse. My nephew just had 2 babies recently and the first one was born with club feet and the second baby was tongue tied, my mother died from complications of rheumatoid arthritis , I went to a RA doctor and she practically kicked me out of the office because I looked so good but RA people can have problems with TMJ and neck instability due to inflammation at the axis A1 A2 which I have, I’m getting debilitating occipital headaches and now I can’t drive, I was very active like you I rode off road motorcycles and loved to jump waves with my jet ski. My neurologist thought I might have Lyme disease but the test came back that I was only positive to one part of the animal, so who knows. I had quite a lot of stomach issues also , I stopped eating GLUTEN and dairy and my sinuses and stomach are 80 percent better, but still pain persists. One thing I tried which has helped me quite a bit is MMS miracle mineral solution also known as CHLORINE DIOXIDE KIT CONTAINS PART( A ) SODIUM CHLORITE mixed with part (B) HYDROCHLORIC ACID this is from JIM HUMBLES PROTOCOL, supposed to cure LYME, at least I don’t have stomach issues unless I’m under extreme stress. I would really like to know why there are so many people suffering with so many of the same things, my guess is VACCINES AS THAT IS THE ONE COMMON DENOMINATOR THAT PRACTICALLY EVERY ONE HAS GOTTEN FROM CHILDHOOD. Anyway I wish you all the best, I started watching you do to my neck issues , actually you are the one that got me looking into ehlers danlos syndrome, and sure enough I’m sure I have it but I had no problems until the age of 30 when stress started it all. Good luck and thank you for sharing
I’m sorry to hear of all you’ve been through, thank you for sharing a piece of your story. I have a hunch that the dramatic increase in ultra processed foods, seed oils, etc is an enormous factor in the dramatic rise in chronic illnesses.Unfortunately are not fueling our bodies well. The carnivore/lion diet has helped me significantly. Anyways, wishing you all the best in your journey!
There’s a new candidate gene for hEDS that was discovered back in June 2021 that they should be nearing the end of testing on. Some of my friends thought I had Lyme disease years ago. I looked up the symptoms and they didn’t match as well as EDS. I was diagnosed by a geneticist and it seems to fit with me. My question is….does Lyme cause dislocations and joint instability? I’ve heard that many with EDS also have chronic Lyme. I’m wondering if the chronic Lyme exasperates EDS symptoms.
I have heard about the new candidate gene. That will be interesting to see how many people have it/what that would imply. Lyme can absolutely cause any of the symptoms of EDS such as dislocations/joint instability. Unfortunately there isn't a lot of research on it yet, and most doctors aren't knowledgeable of chronic lyme/chronic infections and how they can affect people. Wishing you the best in your journey! ❤️️
@@HealingWithRachael thank you for answering my question! I had heard of chronic Lyme and that it was debated among health professionals. I'm in school right now for a medical program and heard one of the A&P professors say that chronic Lyme wasn't real. I don't remember which one but I know 2 people personally who have chronic Lyme and someone in my past that ended up with it. I haven't looked at the symptoms for Lyme in years. It was probably 4 years ago that I was looking into it. I also wish you the best on your journey and that whatever it ends up being that you have, that you get the best care possible :)
@@Laundrey1 It is so hard when there are so many unknowns with these conditions/symptoms! Thank you so much for your kindness, that means a lot! I hope you are able to find the best care for your situation, too :) And good luck with school, that's great you're going into the medical field!!
Girl, same. I have a clinical hEDS diagnosis as well as a positive lyme test (and also positive mold tests as well as other infections). My jaw and upper spine have also been subluxing for years (as well as almost all other joints). We are nearly health twins. And I used to be a rock climbing instructor! I still am not sure how all these issues are connected, though. What is the chance that people like us have POTS, hEDS, and "lyme disease" (whatever that really means)? It's very strange.
Thanks for sharing Emily. Wow, that does sound like we have a lot in common! I'm really sorry to hear that you've been through so much. I hope you are able to find healing from whatever has been making you so sick. Wishing you the best!
@@VanessaLampert I had several tests done. One was a nasal swab of my sinuses (positive for mold) and the other was a urine test by RealTime labs which tests for systemic mold (mine was also positive). Both were ordered by my functional medicine doctor.
I have a muscle imbalance at base of head and neck I've been dizzy and had blurry vision and I feel faint and it's been a year and half now the muscles feel weak and then tight it also affects my balance and I get really bad disorientation and I have problems with my jaw it's a struggle everyday even physio won't help at the moment it's horrible I don't ever feel right
@Rachael Elizabeth They do radiology guided directly into discs and joints and do IV treatments. People have had great outcomes that have ms, lymes and eds. I'm looking into all options because I have ligament laxity in my neck with all kinds of neurological symptoms and serious spinal issues going all the way down my back. Just wondered if you've tried any of these treatments before since you are always looking for ways to heal as am I.
The idea of IV stem cell makes me nervous, so it's not something I am looking into right now. I know many have great success with it though. I have had prolo/PRP on my neck, and it's helped. I'm going to a specialized clinic to have prolo/PRP injections done below my fusion and I'm very hopeful about that. :) Wishing you the best in your own journey!!
@@HealingWithRachael would you say prolotherapy and prp injections have had the same outcome? I'm looking at a place in Florida that does prolotherapy. Supposedly it strengthens ligaments.
I am the same, my friend. I was 💯 fully functional last year and have nearly no known indication of a EDS/Breighton. In one year I went from super fit to bed ridden and my connective tissue is at the core. But…it was all after I took a tick off of me and had swollen lymph nodes in my abdomen…yes, I’m positive for Lyme, Bart, Babesia, TBRF, Mycoplasma Pneumoniae, and more. I have CCI, Alar Ligament damage, suspected TC, IIH, low iron/ferritin, POTS/OH, and quite a bit more. Dr. Phillips is legit, as you know. But I’m currently being treated by Dr. Andrew Heyman. Mold toxicity and Lyme together is what I believe knocked me down. Several old troops of mine in the AF also have connective tissue problems and spine issues now, and we all worked in building with black mold.
Wow, I'm really sorry to hear of all you've been through. Thanks for sharing some of your story and thoughts. I hope you and your friends are able to find healing! I definitely think it's possible, just can be so difficult to find.
I'm very sorry to hear that! I'm not a medical professional, so I can't give you any medical advice. But the carnivore way of eating has really helped me so far, and many others. Diet may be something to look into!
I think what they will ultimately find with some individuals with hEDS are part of a subtype that causes symptomatic disease to be triggered by infection. Many EDSers have Lyme or EBV. Lots of people get Lyme and EBV but why do some of us get really sick and stay really sick? I think that we will probably find that those individuals are predisposed the EDS or another connective tissue disorder and a viral infection is the catalyst for degradation of connective tissue.
Thank you for sharing your thoughts Caroline! I've definitely considered similar theories. What I'm really interested in, is if the damage from such triggers is reversible. That's the big "what if" that could really change everything. I hold on to hope that it is. ❤️️ Wishing you the best in your journey!
@@HealingWithRachael I agree! I think we are all wondering if regardless of what the trigger may be, if we could fix the trigger, could some of the connective tissue function be fixed? There are so many different potential triggers such as infection, autoimmune conditions, and genetics. I think about Mary Frey from the Frey life often and wonder, could there be something like that for EDS or a related connective tissue disease in the future? It's hard to even imagine "getting better", but I am hopeful to! I think one day we will get there.
That's interesting I have zero diagnosis but was exposed to Epstein Barr and lymes around the same 12-24 months about 7 yrs ago. I just recently had ligament laxity found in a neck mri. I also put 2 and 2 together and realized showering and bending my neck backward must constrict something because I get extremely short of breath and dizzy washing my hair. I think bending my neck back paralyzes one side of my diaphragm. I just don't understand how my body is so messed up. No Dr has helped me and I've been looking for answers for 6 years.
@@Sara-world If fatigue is also a symptom that you have I recommend you possibly consider seeing a CFS/ME specialist. They generally know a lot about the overlap between viral causes of fatigue/pots/cervical spine issues. If you are located in the North East or West coast there are a few physicians/clinics who I am aware of who do that kind of work.
@@carolinemoore3771 I'm on the east coast. Can you recommend any good Dr's in the north east? I was going to try to see a neurologist that treats rare neurological disorders in Philadelphia. I take about 30 vitamins a day and melatonin has helped with insomnia. If I stop taking melatonin I stay so tired but unable to sleep because I feel like electricity is running through my nerves. The melatonin doesn't fix that nerve feeling, but it puts me out.
I ask this as genuinely and respectfully as I possibly can, I promise I'm not a troll: why would you suspect that you wouldn't have hEDS over chronic lyme and wish for more research, when hEDS is being tested rigorously and chronic lyme doesn't actually have a medically accepted definition, test or evidence towards existing? I'm not telling you it doesn't exist because it's not my place to know that, but any doctor who isn't a "lyme specific" doctor warns that it is inconsistent with the medical field's research and the treatment is unsafe, so I worry that maybe the reason you feel like the chronic lyme story fits you better is because the chronic lyme story can fit anyone perfectly? the symptoms list for it is practically endless because in the absence of solid research, doctors can speculate any symptom has any cause and immune responses are a perfect explanation for that since they're so widespread. Again I'm not saying this to invalidate you, I don't know for sure, I just know what my doctors and many others have warned of. Outside the CI community chronic lyme is considered a worrying fate because it's very, very easy to click with the "aha" relief that comes from so many people going through the same thing as you. I did too, so I know that exact feeling and how weirdly comforting it is to know that "this thing seems to have all the answers". Obviously chronic lyme patients are all really sick, just like I was when I was almost diagnosed. My primary warned me to get a second opinion and spared me but I fully believed chronic lyme was real and I was genuinely extremely unwell. If it's okay to ask, do you have solid research on chronic lyme you can share? I'm open to being shown, I just worry it's easier to doubt the thing that has clinical and research activity because there's still missing pieces whereas lyme can answer any question because it's not relying on that stuff, and that makes it way easier to lean towards. All humans are capable of falling into these traps and I don't even think the doctors who do this are evil money-draining monsters like a lot of people say. I think it's just complicated but the consequences of letting someone treat you for something without clinical evidence like with lyme are sometimes really awful for the body. I know you aren't worried about labels but safe and effective treatment would be the goal, right? If it helps, my theory on chronic lyme is that it's the best explanation doctors have for a real immune condition they haven't been able to prove yet, but it has no connection to lyme disease. I hope so badly that medicine catches up and defines it so that rigorous testing and treatments can target it accurately and safely. I hope this doesn't come across as invalidating, I'm sorry if it does. I mean to encourage an open mind that it's possible you have the doubt a bit backwards rather than convince you entirely, and I respect that maybe that isn't the answer for you. I never want to make someone feel bad about their position as a patient I just genuinely worry for you. Best of luck!
Thank you so much for your comment and your concerns. I really appreciate you being so kind and do understand why you may think that way. I truly am glad that they're pouring research into hEDS and hope that turns out to be fruitful and that it leads to better treatments for patients in the future. A book that I've found very helpful on information regarding chronic lyme disease (chronic infections would be a better term, as there are so many more than just "lyme" as its often used as a more blanket term) is "chronic" by Dr. Steven Phillips. He is a physician of 20+ years that I would consider extremely open minded, humble, and knowledgeable. He references research and studies done in relation to chronic infections (which he refers to as lyme+). And the overwhelming evidence of the connection between autoimmune diseases and chronic infections. Thousands of patients are getting so much better (so many that have gone completely into remission) with treating the underlying cause of their disease rather than just trying to put a bandaid over symptoms. What concerns me is that they aren’t investing more research into these areas when the evidence is so strong. And like you said, I don’t believe doctors are evil at all. But I also don't believe Big Pharma has our best interest at heart. Unfortunately, there’s no money in a cure. I just hate that there’s the possibility that so many are suffering so greatly when there could in fact be a solution/good treatment out there to help them! I actually feel that my open-mindedness in trying different methods of treatments than what conventional medicine offers is what has brought me the most progress in my chronic illness journey. And quite frankly, I believe it has saved my life. Unfortunately, my trust for western medicine has decreased significantly over the years. But that doesn't mean I don't greatly appreciate and admire the doctors that are fighting hard for people like us. And thank you so much for your concern and worry for me! But treating the underlying cause of my illnesses has done more for me than any other (of the many, many) western medicine treatments I have tried. So personally I'm not worried about that :) And you're right, it does fit a lot of stories. And I think that's the point I'm trying to make, I truly believe many chronic illnesses are caused and or exacerbated by chronic infections. Like I always say, I'm not trying to convince anyone of anything, just feel impressed to share my thoughts and story and people can take them however they'd like. I hope that comes across the way I intended. I would never want to be contentious or offensive in any way. I completely respect your opinions and appreciate your thoughts. All I want is for people to have the best quality of life possible, as living with chronic illness is so incredibly difficult! Wishing you the very best in your own journey!
I personally think you likely have hEDS and that that set you up for the chronic lyme, the TC, chiari, etc. From my understanding of TC, and Chiari, is that you are typically born with it, and thats its more common in EDS. I know Lyme can cause collagen degeneration too, but I guess you would need to know if you had the TC from birth. Dr. Klinge can tell that in surgery due to how the nerves look etc. Those with EDS do seem to also be more prone to underlying infections such as chronic lyme, EBV etc. I am not a doctor so I can't say for certain that you don't have hEDS it just seems like you likely had it underlying and that it was set off by the infection. I hope when the hEDS gene/genes are found that you can get your confirmation. I have cEDS and have both genes one from each parent. Really rare, and odd since my mom is not symptomatic much. I am lucky to have that underlying answer but it doesn't change the fact that I have the co conditions with it. hyper pots, CCI, Chiari, TC, MCAS, ME/CFS etc. It also sucks though because if docs know EDS they only really know hEDS and vEDS, the other subtypes are largely forgotten. I also have very rare auto inflammatory condition. Traps. It is genetic too. Regardless we each have our different journeys, and each of our journeys is just as valid without or without EDS or other things. I hope you can get answers some day, but the most important thing is that you are content with what you know or don't know right now. I continue to wish you the best in the new year, 2022! It has been awhile since I have watched a video. Take care!
But if she has hEDS, how can you explain that she wasn’t sick earlier? She had no symptoms during childhood, it only started in her late teenage years…
@@lizzieb8039 For some people their EDS isn't set off until they have a virus or a stressor in their life. It is actually quite common for this to happen. It isn't the case for everyone person with EDS though. I have cEDS and always had symptoms since birth, but after having EBV as a teen I got much much worse.
I'm SO glad I found your channel! You are one strong woman, and you seem to be so positive about your healing and everything going on. I have been chronically ill since 2009. I was diagnosed with "MCAS," "chronic idiopathic anaphylaxis and angioedema," "Complicated migraines," "seizure disorder," "tremors," "scoliosis (as an adult)", "brain aneurysm", "tachycardia," and the list literally goes on and on and on and on. I thought I was going to be sick for the rest of my life, or die, so I can relate to that feeling....I was almost misdiagnosed with MS (my mom and sister have it, but my sister was also diagnosed with lyme....I think they both have lyme!), so I see where you are coming from and agree with you. I believe all of these things could be related to the chronic lyme for sure...but like you said, who knows? But I bet... I wish chronic lyme upon no one ever! Thank you for sharing your story. Sorry for rambling 😆❤
I think it's like I have heds which predisposed me to being vulnerable and never recovering from trauma/infections etc that a "normal" person would've healed from. It's possible on Earth 2 if I avoided all of this I'd be 1000000% more functional than I am today
It’s all very interesting to think about-so many unknowns! I’m really sorry that you’ve struggled so much! I hope you can find ways to improve quality of life. ❤️
It does sound a bit far fetched that you could be perfectly healthy one day, hiking and being very physically active and then all of a sudden this disease pops up out of nowhere. It sounds more like Lyme + to me as well. I read Chronic, great book. After 4 years of treatment and a lot of my symptoms resolved family still tries to tell me I may have RA, because I cannot get rid of my joint pain. Even after antibiotics have helped it but came back. And then I ask about my other symptom we can’t get rid of, traveling nerve pain, and they cannot explain that one. It drives me crazy why people cannot accept my Lyme+ diagnosis. I’m glad you are seeing a Lyme dr and not just accepting the hEDS Diagnosis. If I had just accepted my RA diagnoses I may not be alive right now. Keep fighting, we know our bodies better than doctors do.
Thank you so much for sharing your thoughts! I'm glad I'm not the only one considering these things. I'm really sorry to hear that you're still struggling with joint pains/symptoms. Have you heard of the carnivore diet? I''m currently doing it and seeing positive results. I very often hear of people managing their joint pain or arthritis with this way of eating. This is the first video I watched about it that got me interested:ruclips.net/video/N39o_DI5laI/видео.html
Anyways, just thought I'd throw that out there, disregard if you'd like, haha. Wishing you the very best in your journey! :)
YES To this video! I have very similar feelings around this to you. my background is super similar to yours with hEDS diagnosis, CCI, tethered cord, Lyme , pots etc
I guess for me at the moment where I see things is there is very likely genetic predisposition, but I think environmental triggers then push us over the edge into disease. for me we are just starting treatment for heavy metals. There are studies showing infections can increase things like MMPs, which can break down connective tissue. I think heavy metals, mould, infections and I’m sure many others can increase mast cell activity, releasing further mediators that can break down connective tissue and cause a lot of inflammation and tissue damage. I think there’s also a little bit showing heavy metals can cause disordered collagen synthesis. (i’m sure you know all this :) )
I think as you have discussed, these are such complex issues and when one System is affected many more parts of the body’s systems go out of balance.
Thank you for all the great videos you do sharing your journey, and I hope 2022 is a great year for you with many more improvements! 💛
Thanks for sharing some of your thoughts on this, Rebecca! It's so great to know I'm not the only one considering this. I think for me, the biggest questions is can the damage done from whatever "trigger" (whether it be chronic infection, mold, diet, environmental factors, pregnancy, etc) be reversed? And I have hope/ a hunch it can be. 💚
I think there is potential danger in telling a patient that they have an "incurable disease" when they really don't know that, because they often stop looking for healing. It doesn't make sense to me that relatively healthy people get very sick all the sudden and then are told they'll never get better! Of course, I'm no expect but I keep hope in healing.
Wishing you the very best with whatever treatments you are doing! I hope this is a great year for you. :)
Hi Rachel, thank you for your videos :) Have you ever come across a podcast called The Chronic Comeback? It's hosted by a guy who has Lyme disease and interviews people who either have that or other diseases and have gotten better. I really liked one episode that was posted recently about a woman named Heather who had an EDS diagnosis (if I remember correctly), CCI etc and was now symptom free, I personally found it very inspiring. CFS unravelled is another one where you find some people who healed from Lyme. Anyways, I thought it might be helpful in case you didn't know those. I really hope you keep making progress and wish you the best in your healing journey ♡
Hi there! Thank you for your kind and thoughtful message. I haven't heard of the "chronic comeback", but it sounds really interesting. I'll check it out! I keep hope that there is a way to heal and reverse damage done from infections, etc. It may be incredibly hard to find a way, but nobody has truly "tried everything" like I hear all the time. I think there's danger in telling patients that they have an "incurable disease" when in reality they don't know that. Wishing you the very best in your own journey! ❤️️
Elizabeth, you may be right about your situation. Stick to your course and perhaps the conditions will gradually resolve themselves. It seems to me that doctors are trained to provide medications based on symptoms, but they are clueless as how to heal. They attempt to treat the symptoms, and that's all they do, and frankly much of their advice I have now discarded. Discovered you only a little over a week ago. Keep up the good work!
Thank you for your kind words! Wishing you all the best!
Thank you for the video. I think it’s important to consider this. My daughter had syrinx and tethered cord in her cervical and thoracic region. She did not have chairi. She developed influenza AH3N2 and never recovered. Prior to her infection her tethered cord and syrinx were not symptomatic and only monitored with mris. After the infection she developed symptoms related to her tethered cord such as gait changes, unlilateral leg pain and foot changes. Additionally she developed pots, and MCAS and is borderline for Ed’s diagnosis. She now has a diagnosis of me/cfs and while I think her tethered cord causes symptoms…I think it was the infection triggered the connective tissue and created spinal cord inflammation and therefore created her disorders/symptoms. I have lupus and my mom had RA. However she is negative for autoimmune diseases. She was often sicker than the rest of us with flu’s ect. So I think her immune system is messed. She was a competitive dancer before hand and now chair ridden. I too have done a lot of research and also recognize that we are all different but in her case I think the infection is what is keeping her so sick. She likely will be affected by her spinal cord for life…and possibly cci but I am happy there long covid research as I think it may provide possible treatments to help improve her quality of life versus surgery if my theory is correct. She has has tethered cord surgery but it has since retethered). So I plan on waiting to try what ever treatments they come out with for long covid/mecfs before another surgery. I am hoping I am right as it would be such a less drastic approach than surgery but it may come to that. I do not know. Regardless these diseases are horrible and I feel for all that suffer them. Thank you for being vulnerable and putting your thoughts out there. I think it’s important to take all ideas as possible causes with a multisystem disease.
This story sounds like mine actually
Great video, thank you for sharing with such honesty. I too agree that infections can induce connective tissue diseases. I went from fully healthy and active (even running a 1/2 marathon) to a wheelchair from 'EDS.' It's baffling to me how this could happen. Mine got really bad after pregnancy. I was extremely 'double jointed' as a kid and even had hand braces made during middle school (but no connective tissue condition was diagnosed at the time). My brother is also 'double jointed' and at 50 can drop and do the splits and all kinds of crazy human tricks. Because he's had so many surgeries for his tendons and ligament, and my high beighton score as well as co-morbidities I do think I have EDS, or whatever anyone wants to call this complex bundle of chronic conditions. But I do wonder if my brother and I were genetically predisposed and perhaps environmental factors activated it (including infections). Whatever I'm labelled, I still feel like I will heal. Maybe because the first 44 year of my life I thought I was normal and the last 4 just don't seem to make sense...but I choose to keep this optimism forever. Cheers to never giving up.
Thank you so much for sharing a part of your journey! Those are all really good thoughts. My lyme doctor says "where there's life there's hope" and I love that reminder. I think keeping hope for healing is so important! And what I really wonder is if we're able to reverse the damage done after "triggering" the EDS symptoms (however they may come about). I have a hunch there is a way, I think the body is better at healing than we may think! ❤️️ It' just can be very hard to find healing. Cheers to never giving up, yes! Wishing you the very best in your journey!
I have hEDS, but was also super fit in my younger years. This is a great video. People don’t understand that genetics and genetics tests only indicate what you may be predisposed to, they don’t say for sure what your body is doing because it all depends on what genes are active. I personally believe that genes can “wake up and go to sleep” depending on external factors. It’s totally possible that you have genetic markers for hEDS and the Lyme “woke up” those genes. And treating the Lyme and other condition can help the hEDS to calm back down. I say that because my hEDS symptoms definitely vary with how my overall health is doing. It also possible you don’t have hEDS - you know your body best.
I totally think infections can trigger or exacerbated things like hEDS. I’m getting ready to do a parasite cleanses to help with my symptoms. You did a great job on the video. I agree that too many hEDS patients think they are doomed because of the diagnosis and don’t realize that just because something has a “genetic” marker does not mean that it’s not treatable. Whether you have HEDS or not isn’t necessarily important except to know your body’s tendencies. But hEDS is totally something you can overcome if you can find the right puzzle pieces. Haven’t gotten there yet, but have seen a lot of victories this past year. It just makes me sad to watch all my EDS friends who have just accepted where they are at. So glad you are pushing for answers. God bless you on your journey.
Hi Laura! Thank you so much for sharing your thoughts! I too have thought about the idea/potential of genes being altered (aka turned off/on like you said) due to infections, lifestyle changes, stress, diet, environment, etc, etc. I'd like to believe there's a way to reverse the damage done. ❤️️
What I really worry about is how people are told that they have an incurable disease when they really know next to nothing about it. I think that's a dangerous thing to tell a chronically ill patient, with any condition really. Just because it's unknown doesn't mean incurable. There are so many people that I've seen go into remission from many chronic illnesses. I think our bodies have a strong ability to heal, it's just very hard to find the right mode of healing as we're all so different! Thanks again for your thoughts. Wishing you the very best on your own journey!
@@HealingWithRachael Yes, totally! And even if something is not curable does not mean it's not "treatable." It's so sad that doctors don't dig for answers and that people blindly believe that there is nothing they can do to improve their health just because of a diagnosis. I just take my hEDS diagnosis as a guide for what my body needs and not a life sentence. Like you said, doctors need to be encouraging people to find answers, not just write things off as incurable. Keep up the good work. I'm sure you are being an encouragement to so many.
How did your parasite cleanse go?
I love this comment. When I found out about this stuff I looked it up and the community online was really negative about anything to do with getting better from it. I believe the same about genes but they were saying it is a dominant gene so I dont know if that makes it different or not able to turn off but I hope we can. I'm pretty sure there might be a lot of environmental things causing this display of symptoms as some stuff helps some heal and does nothing for others
Yes to all of this! This has been my hang up these last 4 years of failing health. I have all the “labels” as well. My EDS doctor said that my reactivated Epstein Barr gave my already stretchy ligaments (but that were holding on well so far) and extra tenderizing affect from the viral constants load in my bed. She said it kicked my collagen disorder into high gear. I have always been super flexible and random health challenges but. I thing since couldn’t handle or thought out of the norm. I believe hEDS is a true diagnoses but they will need to select their trial participants wisely because chronic infections will appear to be in the hEDS category added well. I love this video and I love that you made it and are being vocal. There needs to be way better and the origin care for all us “sickies” that present in the same fashion.
Thanks for sharing your thoughts! In all my years of being sick, almost everyone I've met with EDS has a similar story of something "triggering" their illness to get infinitely worse. What I really wonder, is if there's a way to reverse that damage. I have a hunch/hope that there is a way.💚The body has such a strong ability to heal, it can just be incredibly hard to find. I really do think there's danger in telling patients that they have an "incurable disease" when they actually don't know that for sure. 😢 Anyways, those are just some of my thoughts and I want to keep sharing in case it helps anyone! Wishing you the very best in your own journey!
I’ve had complex health issues for the last 3 years following chronic stress / trauma. At one point I was convinced I had chronic Lyme but you can’t get a diagnosis in the UK. I was diagnosed with CFS & fibromyalgia before recently being diagnosed with hEDS at 30 years old. I had already made some significant improvements using mind-body nervous system regulation before I got this diagnosis and so I refuse to believe that hEDS means I’m going to always be sick. I didn’t always have physical symptoms. I believe the hEDS instability contributes / connects to anxiety and nervous system dysregulation. I see it as one piece of the puzzle but I won’t let it hold me back from believing I can fully heal. Irene Lyon has a great recovery story on her channel from someone who healed their conditions including hEDS by repairing the nervous system. I now believe this is the key to healing. Thank you for sharing your story and good luck on your healing journey ❤❤
I absolutely agree with you!! If you look at some of my more recent videos you’ll see that I’m healing through brain retraining and an animal-based diet. The nervous system is the key to the body’s innate ability to heal! So happy you are making improvements already ❤️❤️
@@HealingWithRachael yes I thought you were also on a similar path as I have been listening to your visualisations 🥰🥰 I also believe an animal based diet is important after previously being vegan for 4 years before I got sick. Thank you so much!!
Our bodies are absolutely amazing at healing themselves
Sometimes we just need to get out of the way
Thank you for sharing
Keep your head up 😉
This resonates with me so much! I was a super active dolphin trainer, moved to Colorado and was backpacking/ hiking 14ers. I was in the best shape of my life. Then suddenly fell apart with eds, cci, tethered cord etc. I believe I have always had eds since I've always been incredibly hypermobile. But something definitely bought out my issues....I think my mom has eds too but she never got sick. I believe that viral infections can open Pandora's box for us with underlying connective tissue disorders. Many covid long haulers are finding out out they have eds so hopefully they will want to research this soon 🤞
Wow, a dolphin trainer, that is so cool! That was my dream job when I was a kid 😅 Thanks for sharing a piece of your story. I'm so sorry to hear of all you've been through and lost with your chronic illness experience. My biggest question is if the damage done from the "trigger" for worsening "EDS" can be reversed. And I really would like to believe and keep hope that it can be. 💚 I worry that telling people they have an incurable disease when they really don't know that causes people to lose hope and stop looking for healing. Of course, that's just my opinion/thoughts! Wishing you the very best in your journey!
@@HealingWithRachael I couldn't agree more! Hope is what gets me through the day so I have to believe that my body can heal. I mean people suffer from being completely paralyzed from spinal cord injuries and can heal from that, why not us? I've also been searching for a more holistic approach lately too and I'm going to the Spero Clinic next month. Also thinking about Caring Medical too since im local. The hardest part is having to choose the right path when we are left to do all this research. I wish you the best on your journey! 💜
Hey Rach,
I think your approach is really good. I’m coming up on 30 years of moderate to severe illness (plus being sick before that most of my life just not bad enough to get any diagnosis)….. I’ve learnt that increasingly doctors aren’t good at seeing the body as a whole and I really do think various aspects impact other parts and it has concerned me that many doctors simply treat symptoms (without necessarily actually fully understanding the drugs or therapies they prescribe!) and don’t seek to heal! Can everything be healed? We don’t know (other than God giving a miracle which he absolutely can do!)…. But I think when the doctors stop trying that’s a problem (note I think taking a rest from medical stuff etc can be very beneficial, so not talking about that or palliative care etc)….. but I do think that many have stopped looking to assist and function better or improve underlying causes of things that make us unwell.
Also, I think that while chronic Lyme (or chronic infection of some type coming under that banner) is absolutely valid and makes sense, it doesn’t negate the hEDS diagnosis (although I also think genetic testing for other forms of ESS doesn’t occur enough and many people actually have a different type of EDS but a whole other discussion 😉)…. I think you can have both! Like lots of people with eds function actually quite well all things considered and they wouldn’t even know they had that illness until another relative becomes sick etc. I don’t think it has to be one or the other. I do think that focussing on things that can assist overall is a good thing irrespective of what the “label” is.
I too have been looking more and more into other alternatives for improving or healing aspects of my life that are impacted by environmental issues and trauma issues etc. I don’t know how much it will or won’t impact my eds (for me it fits but I also got mecfs immediately following a bad bout of glandular fever so it’s been a long road over 3 decades of learning new things all the time and unlearning other things that we took for granted but perhaps shouldn’t have!) but I do honestly think that the things I hope to do will improve functional capacity for me irrespective of eds and co-morbid conditions. Part of this is because I’m doing the work anyway in checking and learning (which I think is God’s leading) and then run things past trusted health professionals as best I can.
I think people dismiss anything that’s not allopathic medicine because it’s not what they’re used to, even though most of these therapies have been used for a much longer time.
When I was diagnosed with mecfs, much of the search for what was wrong stopped…. But they existed and I I absolutely agree with you that we shouldn’t automatically stop when we get one certain diagnosis. Like I said, that diagnosis may be absolutely valid regardless, but doesn’t mean other things aren’t occurring also and that we shouldn’t attempt to heal those things!
Finding the balance I think is a good thing 😊.
Oh and I was going to say, you can see five different specialists with the same symptoms and get five different but valid diagnosis’! That’s because they see much through their own lens of training and increasing less able to see an overall connective picture between symptoms and different body systems!!
I hope I’m making sense because I’m really tired. If I don’t, please feel free to say so and check or ask etc!!
Hi Telle, thank you so much for sharing some of your thoughts and journey. It's really nice to know I'm not the only one considering these things. Honestly I think its dangerous that doctors are telling patients they have an "incurable disease" or that they will always have a certain condition because they really don't know that. It causes people to lose hope in healing when it very well may be possible. Like you said, there's no way to know for sure but I think it helps so much (even mentally) to keep having hope and keep searching for healing. 💚 I'd like to believe that the damage done by chronic infections/triggers that make people very ill can be reversible. I think the body's ability to heal is very strong. Personally, I think our recent shift in diets to ultra-processed foods, seed oils, and more grains is largely contributing to chronic disease. Not fueling our bodies properly makes it very difficult to heal and more vulnerable to chronic illnesses. Of course, those are just my thoughts. I know its all just speculation. Wishing you the very best in your journey!!
I’m right there with you, I’m 66 and have chronic pain for 30 years, I was able to self medicate as doctors don’t know anything, I’ve been to them all, but since Covid I haven’t been able to get my pain pills from Canada so my pain has gotten worse. I haven’t been diagnosed with ehlers danios syndrome but I know I have it for sure because everyone in my family has some of the symptoms, and I think every generation can get worse. My nephew just had 2 babies recently and the first one was born with club feet and the second baby was tongue tied, my mother died from complications of rheumatoid arthritis , I went to a RA doctor and she practically kicked me out of the office because I looked so good but RA people can have problems with TMJ and neck instability due to inflammation at the axis A1 A2 which I have, I’m getting debilitating occipital headaches and now I can’t drive, I was very active like you I rode off road motorcycles and loved to jump waves with my jet ski. My neurologist thought I might have Lyme disease but the test came back that I was only positive to one part of the animal, so who knows. I had quite a lot of stomach issues also , I stopped eating GLUTEN and dairy and my sinuses and stomach are 80 percent better, but still pain persists. One thing I tried which has helped me quite a bit is MMS miracle mineral solution also known as CHLORINE DIOXIDE KIT CONTAINS PART( A ) SODIUM CHLORITE mixed with part (B) HYDROCHLORIC ACID this is from JIM HUMBLES PROTOCOL, supposed to cure LYME, at least I don’t have stomach issues unless I’m under extreme stress. I would really like to know why there are so many people suffering with so many of the same things, my guess is VACCINES AS THAT IS THE ONE COMMON DENOMINATOR THAT PRACTICALLY EVERY ONE HAS GOTTEN FROM CHILDHOOD. Anyway I wish you all the best, I started watching you do to my neck issues , actually you are the one that got me looking into ehlers danlos syndrome, and sure enough I’m sure I have it but I had no problems until the age of 30 when stress started it all. Good luck and thank you for sharing
I’m sorry to hear of all you’ve been through, thank you for sharing a piece of your story. I have a hunch that the dramatic increase in ultra processed foods, seed oils, etc is an enormous factor in the dramatic rise in chronic illnesses.Unfortunately are not fueling our bodies well. The carnivore/lion diet has helped me significantly. Anyways, wishing you all the best in your journey!
There’s a new candidate gene for hEDS that was discovered back in June 2021 that they should be nearing the end of testing on.
Some of my friends thought I had Lyme disease years ago. I looked up the symptoms and they didn’t match as well as EDS. I was diagnosed by a geneticist and it seems to fit with me.
My question is….does Lyme cause dislocations and joint instability? I’ve heard that many with EDS also have chronic Lyme. I’m wondering if the chronic Lyme exasperates EDS symptoms.
I have heard about the new candidate gene. That will be interesting to see how many people have it/what that would imply. Lyme can absolutely cause any of the symptoms of EDS such as dislocations/joint instability. Unfortunately there isn't a lot of research on it yet, and most doctors aren't knowledgeable of chronic lyme/chronic infections and how they can affect people. Wishing you the best in your journey! ❤️️
@@HealingWithRachael thank you for answering my question! I had heard of chronic Lyme and that it was debated among health professionals. I'm in school right now for a medical program and heard one of the A&P professors say that chronic Lyme wasn't real. I don't remember which one but I know 2 people personally who have chronic Lyme and someone in my past that ended up with it. I haven't looked at the symptoms for Lyme in years. It was probably 4 years ago that I was looking into it. I also wish you the best on your journey and that whatever it ends up being that you have, that you get the best care possible :)
@@Laundrey1 It is so hard when there are so many unknowns with these conditions/symptoms! Thank you so much for your kindness, that means a lot! I hope you are able to find the best care for your situation, too :) And good luck with school, that's great you're going into the medical field!!
Girl, same. I have a clinical hEDS diagnosis as well as a positive lyme test (and also positive mold tests as well as other infections). My jaw and upper spine have also been subluxing for years (as well as almost all other joints). We are nearly health twins. And I used to be a rock climbing instructor! I still am not sure how all these issues are connected, though. What is the chance that people like us have POTS, hEDS, and "lyme disease" (whatever that really means)? It's very strange.
Thanks for sharing Emily. Wow, that does sound like we have a lot in common! I'm really sorry to hear that you've been through so much. I hope you are able to find healing from whatever has been making you so sick. Wishing you the best!
Hi, Emily. What kind of test can show a mold infection? It’s some blood test?
@@VanessaLampert I had several tests done. One was a nasal swab of my sinuses (positive for mold) and the other was a urine test by RealTime labs which tests for systemic mold (mine was also positive). Both were ordered by my functional medicine doctor.
I believe the root cause is nervous system dysregulation
Can you please reach out to me. I have chiari malformation 1.5 and locked jaw
I was fine for years and then my joints fell apart skull to toe in 9.months peope say its eds but it's very sudden
I'm sorry to hear that! Wishing you all the best in your journey.
Rachel, were you ever diagnosed with MCAS?
Have a you had the Invitae 92 gene Connective Tissue panel? It’s only $250 and it can be very helpful.
EDS seems to predispose people to several chronic illnesses. People without genetic mutations don’t seem as susceptible to tick born illnesses.
I have a muscle imbalance at base of head and neck I've been dizzy and had blurry vision and I feel faint and it's been a year and half now the muscles feel weak and then tight it also affects my balance and I get really bad disorientation and I have problems with my jaw it's a struggle everyday even physio won't help at the moment it's horrible I don't ever feel right
How are you now?
Have you ever considered stem cell treatments? I'm looking into it for myself now.
Injections for the neck or intravenously for lyme disease treatment?
@Rachael Elizabeth They do radiology guided directly into discs and joints and do IV treatments. People have had great outcomes that have ms, lymes and eds. I'm looking into all options because I have ligament laxity in my neck with all kinds of neurological symptoms and serious spinal issues going all the way down my back. Just wondered if you've tried any of these treatments before since you are always looking for ways to heal as am I.
The idea of IV stem cell makes me nervous, so it's not something I am looking into right now. I know many have great success with it though. I have had prolo/PRP on my neck, and it's helped. I'm going to a specialized clinic to have prolo/PRP injections done below my fusion and I'm very hopeful about that. :) Wishing you the best in your own journey!!
@@HealingWithRachael would you say prolotherapy and prp injections have had the same outcome? I'm looking at a place in Florida that does prolotherapy. Supposedly it strengthens ligaments.
I am the same, my friend. I was 💯 fully functional last year and have nearly no known indication of a EDS/Breighton. In one year I went from super fit to bed ridden and my connective tissue is at the core. But…it was all after I took a tick off of me and had swollen lymph nodes in my abdomen…yes, I’m positive for Lyme, Bart, Babesia, TBRF, Mycoplasma Pneumoniae, and more. I have CCI, Alar Ligament damage, suspected TC, IIH, low iron/ferritin, POTS/OH, and quite a bit more.
Dr. Phillips is legit, as you know. But I’m currently being treated by Dr. Andrew Heyman. Mold toxicity and Lyme together is what I believe knocked me down. Several old troops of mine in the AF also have connective tissue problems and spine issues now, and we all worked in building with black mold.
Wow, I'm really sorry to hear of all you've been through. Thanks for sharing some of your story and thoughts. I hope you and your friends are able to find healing! I definitely think it's possible, just can be so difficult to find.
Did your doctor's ever check you for a cerebrospinal fluid leak? 💕
Yes! I’ve had several CSF leaks in the past, but I actually have the opposite problem, intracranial hypertension!
I am from India mother of two kids. I am with heds please help me to manage this condition
I'm very sorry to hear that! I'm not a medical professional, so I can't give you any medical advice. But the carnivore way of eating has really helped me so far, and many others. Diet may be something to look into!
@@HealingWithRachael thank you.
@@kuttiesrecipes9929How r u doing, I am from India too.. Can i ask u ? What all symptoms do u have . ?
I think what they will ultimately find with some individuals with hEDS are part of a subtype that causes symptomatic disease to be triggered by infection. Many EDSers have Lyme or EBV. Lots of people get Lyme and EBV but why do some of us get really sick and stay really sick? I think that we will probably find that those individuals are predisposed the EDS or another connective tissue disorder and a viral infection is the catalyst for degradation of connective tissue.
Thank you for sharing your thoughts Caroline! I've definitely considered similar theories. What I'm really interested in, is if the damage from such triggers is reversible. That's the big "what if" that could really change everything. I hold on to hope that it is. ❤️️ Wishing you the best in your journey!
@@HealingWithRachael I agree! I think we are all wondering if regardless of what the trigger may be, if we could fix the trigger, could some of the connective tissue function be fixed? There are so many different potential triggers such as infection, autoimmune conditions, and genetics. I think about Mary Frey from the Frey life often and wonder, could there be something like that for EDS or a related connective tissue disease in the future? It's hard to even imagine "getting better", but I am hopeful to! I think one day we will get there.
That's interesting I have zero diagnosis but was exposed to Epstein Barr and lymes around the same 12-24 months about 7 yrs ago. I just recently had ligament laxity found in a neck mri. I also put 2 and 2 together and realized showering and bending my neck backward must constrict something because I get extremely short of breath and dizzy washing my hair. I think bending my neck back paralyzes one side of my diaphragm. I just don't understand how my body is so messed up. No Dr has helped me and I've been looking for answers for 6 years.
@@Sara-world If fatigue is also a symptom that you have I recommend you possibly consider seeing a CFS/ME specialist. They generally know a lot about the overlap between viral causes of fatigue/pots/cervical spine issues. If you are located in the North East or West coast there are a few physicians/clinics who I am aware of who do that kind of work.
@@carolinemoore3771 I'm on the east coast. Can you recommend any good Dr's in the north east? I was going to try to see a neurologist that treats rare neurological disorders in Philadelphia. I take about 30 vitamins a day and melatonin has helped with insomnia. If I stop taking melatonin I stay so tired but unable to sleep because I feel like electricity is running through my nerves. The melatonin doesn't fix that nerve feeling, but it puts me out.
I ask this as genuinely and respectfully as I possibly can, I promise I'm not a troll: why would you suspect that you wouldn't have hEDS over chronic lyme and wish for more research, when hEDS is being tested rigorously and chronic lyme doesn't actually have a medically accepted definition, test or evidence towards existing? I'm not telling you it doesn't exist because it's not my place to know that, but any doctor who isn't a "lyme specific" doctor warns that it is inconsistent with the medical field's research and the treatment is unsafe, so I worry that maybe the reason you feel like the chronic lyme story fits you better is because the chronic lyme story can fit anyone perfectly? the symptoms list for it is practically endless because in the absence of solid research, doctors can speculate any symptom has any cause and immune responses are a perfect explanation for that since they're so widespread. Again I'm not saying this to invalidate you, I don't know for sure, I just know what my doctors and many others have warned of. Outside the CI community chronic lyme is considered a worrying fate because it's very, very easy to click with the "aha" relief that comes from so many people going through the same thing as you. I did too, so I know that exact feeling and how weirdly comforting it is to know that "this thing seems to have all the answers". Obviously chronic lyme patients are all really sick, just like I was when I was almost diagnosed. My primary warned me to get a second opinion and spared me but I fully believed chronic lyme was real and I was genuinely extremely unwell.
If it's okay to ask, do you have solid research on chronic lyme you can share? I'm open to being shown, I just worry it's easier to doubt the thing that has clinical and research activity because there's still missing pieces whereas lyme can answer any question because it's not relying on that stuff, and that makes it way easier to lean towards. All humans are capable of falling into these traps and I don't even think the doctors who do this are evil money-draining monsters like a lot of people say. I think it's just complicated but the consequences of letting someone treat you for something without clinical evidence like with lyme are sometimes really awful for the body. I know you aren't worried about labels but safe and effective treatment would be the goal, right?
If it helps, my theory on chronic lyme is that it's the best explanation doctors have for a real immune condition they haven't been able to prove yet, but it has no connection to lyme disease. I hope so badly that medicine catches up and defines it so that rigorous testing and treatments can target it accurately and safely.
I hope this doesn't come across as invalidating, I'm sorry if it does. I mean to encourage an open mind that it's possible you have the doubt a bit backwards rather than convince you entirely, and I respect that maybe that isn't the answer for you. I never want to make someone feel bad about their position as a patient I just genuinely worry for you. Best of luck!
Thank you so much for your comment and your concerns. I really appreciate you being so kind and do understand why you may think that way. I truly am glad that they're pouring research into hEDS and hope that turns out to be fruitful and that it leads to better treatments for patients in the future.
A book that I've found very helpful on information regarding chronic lyme disease (chronic infections would be a better term, as there are so many more than just "lyme" as its often used as a more blanket term) is "chronic" by Dr. Steven Phillips. He is a physician of 20+ years that I would consider extremely open minded, humble, and knowledgeable. He references research and studies done in relation to chronic infections (which he refers to as lyme+). And the overwhelming evidence of the connection between autoimmune diseases and chronic infections. Thousands of patients are getting so much better (so many that have gone completely into remission) with treating the underlying cause of their disease rather than just trying to put a bandaid over symptoms.
What concerns me is that they aren’t investing more research into these areas when the evidence is so strong. And like you said, I don’t believe doctors are evil at all. But I also don't believe Big Pharma has our best interest at heart. Unfortunately, there’s no money in a cure. I just hate that there’s the possibility that so many are suffering so greatly when there could in fact be a solution/good treatment out there to help them!
I actually feel that my open-mindedness in trying different methods of treatments than what conventional medicine offers is what has brought me the most progress in my chronic illness journey. And quite frankly, I believe it has saved my life. Unfortunately, my trust for western medicine has decreased significantly over the years. But that doesn't mean I don't greatly appreciate and admire the doctors that are fighting hard for people like us.
And thank you so much for your concern and worry for me! But treating the underlying cause of my illnesses has done more for me than any other (of the many, many) western medicine treatments I have tried. So personally I'm not worried about that :)
And you're right, it does fit a lot of stories. And I think that's the point I'm trying to make, I truly believe many chronic illnesses are caused and or exacerbated by chronic infections.
Like I always say, I'm not trying to convince anyone of anything, just feel impressed to share my thoughts and story and people can take them however they'd like. I hope that comes across the way I intended. I would never want to be contentious or offensive in any way. I completely respect your opinions and appreciate your thoughts. All I want is for people to have the best quality of life possible, as living with chronic illness is so incredibly difficult! Wishing you the very best in your own journey!
I personally think you likely have hEDS and that that set you up for the chronic lyme, the TC, chiari, etc. From my understanding of TC, and Chiari, is that you are typically born with it, and thats its more common in EDS. I know Lyme can cause collagen degeneration too, but I guess you would need to know if you had the TC from birth. Dr. Klinge can tell that in surgery due to how the nerves look etc. Those with EDS do seem to also be more prone to underlying infections such as chronic lyme, EBV etc. I am not a doctor so I can't say for certain that you don't have hEDS it just seems like you likely had it underlying and that it was set off by the infection. I hope when the hEDS gene/genes are found that you can get your confirmation. I have cEDS and have both genes one from each parent. Really rare, and odd since my mom is not symptomatic much. I am lucky to have that underlying answer but it doesn't change the fact that I have the co conditions with it. hyper pots, CCI, Chiari, TC, MCAS, ME/CFS etc. It also sucks though because if docs know EDS they only really know hEDS and vEDS, the other subtypes are largely forgotten. I also have very rare auto inflammatory condition. Traps. It is genetic too. Regardless we each have our different journeys, and each of our journeys is just as valid without or without EDS or other things. I hope you can get answers some day, but the most important thing is that you are content with what you know or don't know right now. I continue to wish you the best in the new year, 2022! It has been awhile since I have watched a video. Take care!
But if she has hEDS, how can you explain that she wasn’t sick earlier? She had no symptoms during childhood, it only started in her late teenage years…
@@lizzieb8039 For some people their EDS isn't set off until they have a virus or a stressor in their life. It is actually quite common for this to happen. It isn't the case for everyone person with EDS though. I have cEDS and always had symptoms since birth, but after having EBV as a teen I got much much worse.
@@kristinwallace6551 Thank you for clarifying !
Of course. Glad it made sense. ❤️