Hi, If different types of EDS affect different collagen types, would supplementing with specific hydrolysed collagens help? Would type 1 collagen supplements help? Or would it get broken down and rebuilt faulty? Would types II,III,IV,V, X collagen supplements help if the type of EDS you have doesn’t affect those specific collagen types? Or does it not matter what collagen supplement you take, whatever your body builds will always be faulty? I guess what I’m asking is are collagen supplements always useless for someone with EDS or HSD?
Please reccomend somewhere in Australia can get help for this as after 20yrs of hell and never ending diagnosis of POTS , functional gut disorder. Muitlple conpression disorders, TOs, Nutcracker syndrome and recently suspected mAls , CFS, IBs, TMJ, vascualr and circulatory issues, raynauds, and inability to gain weight woth widespread joint organ msucle pain. I stopped goiny to drs all time as so much wrong its overwhelming for them and me. currently seeing a surgeon for TOs survery for compressed axillary artery and subclavian vein but terrified of surgery causing more complications. I have not had surgery for the NCs and will noy but the TOS is ruininy my nerves in chest arm and neck. Trying to not let dark thoughts of suicide take over and awaiting testing for EDS to see if this is reason for all issues since POTS and Fibro etc is common with it. I assume ild need to rule this out before surgery but the collarbone and neck swrlling and nerve damage is worrrying me thst if dont get surgery my right arm will become disabled. Im so lost and use to be so strong minded and im now a shell of what feels like beiny isolated from society under a black never ending cloud
I have EDS. This made me cry hearing all my symptoms and conditions explained. Some Doctors don’t understand every symptom that EDS causes. Often symptoms are dismissed or ignored. It’s nice to see a doctor that is highly knowledgeable.
This is one of the BEST and most thorough explanations of what’s happening at the cellular level in the many different subtypes and how the presentation of symptoms is associated with the many places that breakdowns occur in our collagen and elastin production and processing. Wonderful. I learned so much!
My cervical spine is in bad shape. 4 discs have connected by spurs and arthritis. I had an intolerable headache and went to ER. They did an MRI. The first doc wanted me transferred to a hospital for a neurosurgeon! A neurologist decided not to. My discs look like the leaning tower of Pisa. It's so close to the spinal column. There is only a thin line of fluid getting through.
I have EDS. I'm 67 now. I need both shoulders replaced and my other knee. My cervical and lumbar spine are bad. Full of spurs and arthritis. I get cluster headaches so bad I've been to ER several times. I had no idea I had EDS until my daughter was diagnosed a few years ago. I've had health issues all my life. I was kept out of gym for 6 years due to my knee. I had major surgery on it at 19.
I've had health issues my whole life, I'm 67 now. My daughter was diagnosed a few years ago. So I finally know what us wrong. I had major knee surgery at 19, as I got older everything went wrong medically. I hemmoraghed after 3 deliveries, prolapse at 37, hysterectomy at 38. I gave 2 pints of blood, he needed both. I now need both shoulders replaced and my other knee. My cervical spine is full of arthritis and spurs.
Thank you for this informative discussion. The information you've shared will make a significant difference, and I will ensure it reaches all my colleagues. We frequently find MCAS in many EDS patients. Still, we see more and more cases pop up in people without EDS who have been diagnosed with IBS, IBD (diarrhea and constipation), nausea and vomiting, autoimmune spectrum disorders, chronic urticaria, hives, chronic inflammatory brain conditions like ADHD/ADD, mood disorders, depression, bipolar, insomnia, the full spectrum of neurological conditions, red, scratchy and blurry eyes, sinusitis, chronic pain syndromes (esp ice pick or debilitating localized pain) cervical injuries, food sensitivities, celiac, toxic exposure (esp mold) and POTS and the lists go on. You are correct that the diagnosis is tricky, especially when ordered in the ER or from an allergist or specialist. Tryptase is elusive, and even 24-hour n-methyl-histamine won't reveal much - because you have to catch it right when it's happening! These mediators don't always present which makes this diagnosis tricky - and though not the best, sometimes we do resort to mast cell stabilizers to calm things down and they work MOST of the time while we look for the triggers - infectious (usually) stress and toxins, This education is not just for people with an EDS diagnosis but for everyone with this sequelae. I am grateful for your erudite discussion and attention, especially with pain patients.
How are these conditions Dr. Chopra talks about so in depth are not more well understood and treated for regular people? This video is 4 years old. I’m 26 and I know myself, and at least 50% of everyone I know (of all ages) have struggled with things like EDS pain, POTS, MCAS, gut problems, etc since childhood. Yet I feel like I’m out here treating myself. Learning from RU-vid and Reddit, etc and only going to my doctors when I need something prescribed or to fight to try to get a test ordered… but in reality we’re treating ourselves…and it’s expensive and draining.
How are these conditions Dr. Chopra talks about so in depth are not more well understood and treated for regular people? This video is 4 years old. I’m 26 and I know myself, and at least 50% of everyone I know (of all ages) have struggled with things like EDS pain, MCAS, gut problems, etc since childhood. Yet I feel like I’m out here treating myself. Learning from RU-vid and Reddit, etc and only going to my doctors when I need something prescribed or to fight to try to get a test ordered… but in reality we’re treating ourselves…and it’s expensive and draining.
As a new born two moths premi- two weeks old , something set off my immune system. I was allergic to all forms of milk, severe asthma & allergies. I was allergic to dust, animals, smoke, grass, carpet, all but meat a few canned vegetables and a few fruits. Almost put in a bubble. I was allergic to the serum that held the allergy shots together and the syringe. My meds had to be special made outta state , given to me through a gold syringe and needle , or silver , I don’t remember. I had anaphylactic shock many times, severe asthma, severe allergies, bladder issues, welts, high fevers they iced me down in the hospitals. they had to ice me down, allergic to vaccines. Double lung pneumonia every year 1-2 times a year till I was 7 or 8. Fell out of a moving vehicle at four, hitting my head and causing severe migraines to hit , along with my allergies. We suspected I was allergic to my fluctuations in hormones.I couldn’t breath out both nostrils till 7th grade. Grade school and younger, I woke up eyes sealed shut from dried crust from allergic reactions. By junior high , I could eat many foods , and less reactions. Eventually I rarely reacted to much even lungs were great. 2007 I get Lyme , 100s of nymph ticks all over me. Got bit again in 09… realized Lyme wasn’t going away , treated then hit it hard from 201 0:405-19 Get CoVid , whole body nerves went on fire, felt like I was radiated inside. 2021 dr put me on ivermectin to treat Lyme coinfection, year later my Lyme is in remission. From late 2019 -2021 I had wide spread neuropathy, I also had a tumor on my pituitary, causing adrenaline dumps. Dr believes after 3 years of digging, I got reactivated MCAS . Only it was attacking my organs , nerves and brain, not how it was when I was young. I had so much adrenaline I had became my own epi-pen. Which is why we think my throat wasn’t closing and swelling shut like it did when I was little. Why it took so long to figure out. I’m 2021 everything went boom, CoVid brain infection 🤷🏼♀️ but I hallucinated, personally change, never violent, but sometimes got angry , didn’t call people names, but mostly fled or froze, …. autoimmune immune encephalitis. I lost almost every friend I had, a fiancé… no one believed I was hitting a ten pain in my nerves every 4 hours when my meds wore off. Three years of the worst hell and torture!! I had natural childbirth with one of mine, and this pain was way worse. But you can’t just go around screaming 🤦🏼♀️ I stayed in shock three years , in severe pain , 3-4 hours sleep. MCAS!! Dr believed the only reason i wasn’t having seizures was all the adrenaline. When I had the huge reaction in 21, I couldn’t eat for like 6-8 weeks, everything burned. Organs kidneys!! I ate just a bite of a cracker brand from Europe , a cracker or two for 8 weeks. Before we realized it was MCAS. I’m allergic to vaccines , medically excused for decades. The allergist I had for 25 years wouldn’t see me unless I got a vaccine, neither would the neurologist. My family Dr and I researched and we stumbled on MCAS. It wasn’t called that when I was little. So I’ve been on antihistamines, other things, cannibis is what I did for pain… needed opieds but no way was I getting on them. I feel like iv been tortured half my life
I had the hives for 28 years. Started 3 months after I had my first child.. had some kind of heart issues since I was born. I just thought everybody was like that.. allergist put me on hismanol For chronic cold touch UTA cura.. I would have reactions to tomatoes and chocolate at times. What is on it for years every day. In 99 my heart took off and wouldn't stop. What is put on all kinds of heart meds didn't work made me worse. Already had low blood pressure. Finally told my doctor if you don't send me somewhere I'm going to die. Finally a cardiologist. He said the hismanol is what did it.. bladder infection on most killed me in 2011. Rounds and rounds of horrible antibiotics. Was going blind from the antibiotics I knew I was dying. Went to a Chinese acupuncture and medicine doctor. Got off all the antibiotics. He healed my bladder infection. And he healed my hives. 6 months later I went numb from the bottom of my foot up to my waist. That was 12 years ago this month. Now to fail back surgeries. Pain management doctor has killed me with diazepam. I always been hypersensitive to medication. This explains it all 🥺
I this is amazing..your describing all my symptoms. And my triggers..I have constant pain..some days worse than others..diagnosis fybro..in 2008..I never believed it was…I got friendly with a girl who was Auvhedic..she told me two years back she thought this was what I had..
My symptoms are feeling hypoglycemic and feeling sugar highs if I eat sugar/ carbs. I also have brain fog triggered by histamine food. I've been on the low histamine diet and I no longer feel as hypoglycemic. I'm 60 years old and I'm wondering why after all these decades no doctor ever suggested anything to me about eating low histamine. I read that histamines affect cytokines and cytokines affect blood sugar. I used to eat hard candy because I felt hypoglycemic but then I would have a reaction to the sugar and now I no longer need to eat candy.
I have a question around 29 minutes where you talk about nerves registering pain. I have a question or challenge to that. As a long term back pain sufferer I've done extensive research on that topic. My understanding is that the latest Neurological stance on pain is that there are no nerves which register pain. Pain is said to be an output of the brain based on multiple factors. The nerves register physical phenomenon such as pressure and temperature but not pain as such. Just wondering if there is any clarification on this very important point?
This video is 5 years old, there is zero improvement in Canada. I've been diagnosed with EDS/marfan and the process to get it in Canada has been a lesson in madness. Doctors simply either don't know anything about the spectrum, of if they do, they run for the hills from you because it's too complex. In Canada, with these disorders, you are doomed to take what crumb of care you can get. Especially so if you advocate for yourself and end up being right; that you do in fact have this disease. Advocating for yourself with EDS in Canada is a form of self inflicted abuse and you end up with severe PTSD from the gaslighting, avoidance, denialism, and rejection of doctors and the utterly broken and archaic medical system. Pro tip for all the willfully ignorant doctors in Canada with a patient who suspects they have EDS: google
Thanks for this great presentation. I have a low lying caecum and I am extremely underweight, currently have my initial genetics appointment scheduled in May. The presentation has covered treatments and how they are advantageous for Ehlers Danlos patients who I am suspecting I am in that category. ❤
20:00 My immunologist ruled it out because my trypase levels are normal but i’m in an MCAS group and EVERYONE thinks I have it. All this time the only thing that’s given me any kind of relief is Benadryl and DAO enzymes. Most importantly I basically can’t eat anything and I even have to be careful for environmental triggers
I have high prostaglandin d2, Experience severe muscle pain, bone pain.Weakness stomach issues and anxiety and nervousness. started taking ketotifen, It helped a lot, gastrochrome Seem to make me worse.What else do I need to be doing. Is still have no energy and very weak.
My son also did this for me! I'm 50 and have EDS, fibromyalgia, visceral and skin hypersensitivity amongst other conditions. It is helping me stay up most of the day (used to be in bed all day)and sleeping way better at night. Obviously doesn't fix everything but the dial has definitely gone way down on my pain. So grateful this is being more recognised. Thanks for the video.
This was fascinating to see. I'm currently waiting to be tested for EDS because while hEDS generally fits my symptoms, I was born with bilateral hip dysplasia and it's possible I have one of the other types. (Easy bruising, etc).
I dont really care what the name of the condition of health issues. The real questions are what causes it and what removes it. The other questions why are people more ill now with allergys. I am thinking Psudo-foods, latent (hidden)dental infections as in root canals etc. Heavy metals, molds- (biofilms) -candida, nutrient deficiency, parasites, RF, wifi, data etc. Gall bladder-liver stones. Neuro toxins, BPA's, acetylhyde air freshners chemicals from modern homes formaldahyde-chemicals etc.
Stay away from PPI's unless absolutely necessary, better to change your diet as hip fractures And degenerative disk disease are much more prevalent than what they knew at the time in 2016
