Wow, your description of a patient is bang on! That was my life

Yeah lots of fun....not.

Thank you this was so helpful as a patient with hsd. I wish my doctors had informed me of this when diagnosing me.

This is great. I've always had probably grade 1 dysautonomia (I have the entire cluster of the Pentad) but I was on a drug once called Clomipramine (a tricyclic antidepressant) and it slowly caused me to go all the way to grade 3 or 4 dysautonomia for almost a decade. Nobody realized that this drug was causing this increase. So, I spent a decade on Midodrine, drinking salt water, propranalol trying to not pass out when I stand up. When I lost my job and medical benefits in 2017, I decided to stop taking Clomipramine because I couldn't afford it. It was an accidental win because the POTS literally vanished back to grade 1 (just light headed upon standing). I'm constantly putting this out there because I know a lot of folks in this cluster get diagnosed with "Fibromyalgia" and then put on Amitriptyline (which is also a tricyclic antidepressant) so... maybe there is a connection

As a Canadian I thank you for bringing attention to this debilitating illness. I have Lyme disease, high level of SIBO and MCAS. I was originally diagnosed by my family doctor with Fibromyalgia. Several times she offered me antidepressants and suggested yoga and that was pretty much it. After showing her a positive test through Armin Labs said she has never heard of SIBO and I couldn't possibly have Lyme. I tested positive for Lyme through Armin Labs in Germany and am symptomatic. I have been taking antihistamines for over 40 years and can't seem to do without them or I get hives and itchy. I have temperature dis-regulation and so many other symptoms. I had no idea there was a name to all the symptoms that I've had for years. The Lyme doc I'm will explained MCAS to me and it all made sense ... all the weird symptoms I've had since around 12 yrs old or so. They just really increase and some new ones came after I contracted Lyme.

I nearly died from hypovolemic shock in the ER due to a "heavy period". Likely more prone to this because of chronic hypovolemia with POTS and possible heparin release from MCAS, too. But of course, no one thought of that in the ER. They didn't even realize it was hypovolemic shock, sent me home the same night and I was crippled for 10 months with hypovolemic POTS on top of my regular POTS because no one would give me IV fluids until I got really sick earlier this year. My symptoms were instantly better after the fluids.

I'm afraid he is correct saying that most neurosurgeons and other type of MDs, do not understand cci/aai at all

Fantastic presentation, thanks so much for sharing

Fantastic presentation, thanks so much for sharing 👏👏👏

I will forever be grateful to this man along with a handful of other doctors and researchers at Vanderbilt’s autonomic dysfunction center. Nearly 12 years ago I was absolutely struggling to get through my days because of a million terrible symptoms, and these amazing individuals were able to give me a diagnosis and at least an idea what I was battling. POTS has had a profound impact on every aspect of my life, but I’m grateful to know (because of Dr. Raj!) that my symptoms are real and not just imagined or made up. Also, for those this may help- upright physical therapy exercise shoulder deep in a swimming pool was very helpful for me. Eventually I was able to exercise chest deep and then waist deep until eventually I could tolerate exercise outside of a pool. It took about six months, but it did work and changed my life. Good luck out there everyone struggling with these issues. This is a terribly difficult battle to be fighting every day. You’re definitely not alone❤

On the slide for mast cell triggers, it lists Acetylcholine complement fragments (C3a, C4a, C5a). Would a patient with myasthenia gravis have more of these fragments that could possibly triggering their MCAS?

I think a red blood cell dysfunction may be the issue regarding defective venous return/blood/oxygen circulation as root cause.

I need a diagnosis do you have any colleagues in Cincinnati Ohio you can recommend? I want to be seen by a professional that understands eds . ❤

I carry the genes for celiac disease and get flare ups of fibromyalgia, chronic fatigue, anxiety and brain fog if I eat GLUTEN! Wheat is hidden in so many foods. I would feel better and then get "glutenized". People canbhave gluten sensitivity and still not have celiac disease. I would recommend doing an elimination diet. With a strict lion diet/carnivore, I saw pain go away quickly once i got adapted. I'm now using carnivore (beef is anti inflammatory) as a safe base to add items to see how I react. If the pain and other symptoms return, then I will drop that food. If i accidentally consume gluten it will put me in bed with almost flulike symptoms of debilitating fatigue, muscle pain, dull headache in the forehead, brain fuzziness, water retention and bloating. There are other triggers such as mold and certain other foods. But with those the suffering is "only" a day as long as I remove the food out again. Gluten has a very long half life in the body so when eliminating it initially it may take several months to see symptoms disappear. The carnivore community is seeing amazing results with things like MS and many other diseases going into remission.

BTW, Covid19 severely disrupts the cellular function of the Golgi Apparatus hence the connection with Connective Tissue disorders.

Hi there! This is amazing! Thank you! Could you - or anyone - touch on why NSAIDS are conteaindicated here? Im just starting the zebra walk with my eldest teen daughter (its such a daunting task - ugg) My child has been put on Ibuprofin or naproxin for her intractable migrains but the problem is she has migrains Q 2x per month for 5 day durations and i worry about her kidney function

Is it possible to get any of this testing in Ontario in 2024? I’m trying to get a diagnosis of ME (already diagnosed with FM), but my family doctor won’t diagnose me.

Do you think cavernous malformations in the brain are linked to MCAS and EDS? Possibly vascular EDS?

Are cavernous malformations in the brain possibly linked to vascular EDS?

I would love to talk to this man.

Many cases of MCAS (Mast Cell Activation Syndrome) are occurring due to SARS-CoV-2 infections, yet the government and media have been downplaying the associated risks for over four years. This is just one of many health issues resulting from repeated infections, but by calling cases "mild," the media is fostering a dangerous misconception. The public doesn't understand that "mild" in medical terms doesn’t mean harmless, leading many to mistakenly equate COVID-19 with seasonal influenza-which couldn’t be further from the truth. People are being repeatedly infected, especially children in schools who then bring the virus home to their families. This is undoubtedly the biggest public health failures in history. There should be an immediate mask mandate in all public spaces, schools, and especially hospitals to protect the public and prevent further long-term health complications.

The ministry of health doesn’t let doctors do their jobs and order the blood tests that they need to treat their patients? Isn’t that criminal?😮

6

wish she wasn't so wacky irritating.

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?

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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 KZbin 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 KZbin 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

Long exposure to mold started mine. Well mold and severe stress

Wow. If pots and eds are autoimme, and we could start treating the cause instead of symptoms, maybe I wish get better

omg 3 minutes in and you're already spot on with my neurologist's assumption about my diagnosis: functional neurological disorder 🙄

That is definitely not how the Greek word _diastole_ is pronounced.

❤😂❤😂❤

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 was very active and led a busy life like Becky ..also Cptsd..other trauma..

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..

I just read an article about how melatonin might help people with MCAS

maybe vaccines are a factor