The Link Between MCAS, POTS, and EDS with Dr. Leonard Weinstock

If you’re looking for more information on this topic, check out my articles on drruscio.com/. And if you need extra health guidance, you’re welcome to work with us at the Rusico Institute: bit.ly/3JBkGei We’d love to have you.

Dear strangers, please pray for my recovery and strength as I battle through some tough health challenges.

Thank you, thank you. For 68 years, I have been taken or have gone to specialists for various health problems. It wasn't until last year that I sat down with my new rheumatologist and begged him to listen as I told him my medical history. I would finally find out the complete truth. For the first time, a specialist listened. I was born with hip dysplasia, high arched palate, I scar easily even from a scratch, I was born with hyper flexibility shallow sockets on my joints, I dislocate joints easily. I have allergies that come and go. They can be mild one minute anaphylactic the next. I tested positive for Mast Cell back in the early 90s. I have had gastric reflux, asthma, and IBS all my adult life. Now my new Rheumatologist, had diagnosed me with osteoporosis. At the end of my appointment, he told me that he could definitely tell me how all my puzzle pieces added up. He said that I had EDS. I told him another family member had been diagnosed with EDS. I wish specialists would take their blinders off and begin to truly listen to their patients. I just wish they all listened earlier.

I have been diagnosed with ME/CFS and for the past 17 years I’ve been bed/housebound. A young friend of mine has EDS, POTS and fibromyalgia diagnosed. Our symptoms are very similar and lead to the same effects. To improve my knowledge I’ve been watching your videos, ( which I’ve enjoyed), but there seems to be so much overlap in these type of conditions. Both of us are treated badly by medical/hospital staff; who show no signs of awareness of conditions and how they affect us. In my friends case this, I believe, this has led to the belief that she is a drug addict. Whilst pregnant she developed renal stones (which causes excruciating pain ). The staff withheld pain relief and her regular medication (pregabalin). Now that she has given birth, they are trying to remove her baby, because they believe she’s at risk! The situation is totally unbelievable. To see someone being ignored once you inform the staff that they have EDS, POTS and fibromyalgia is heartbreaking. Sorry I’ve ranted but you’re some of the only people who understand 😢

I had extremely bad MCAS for 3 years . Due to Guardia (got a sick dog with it) & mold (I am a designer who was onsite of an old house remodel)…..all this at the time I got very ill. I was allergic to everything (light, smells, food & electro magnetic waves). I went to every mainstream Dr here in LA & wasted thousands of dollars. No Dr ever helped me. My throat was closing & I weighed 117 & never craved food & was constipated. My healing has been slow & steady & with the help of a holistic path & a few fantastic books. I also made a list & started checking off things…..house checked for mold, fillings taken out, vitamins, probiotics, meditation, low stress, exercise, clean water filtration, linen bedding, air filter, quality soaps & makeup, clean eating with no carbs or sugar. I am 60 percent better. I am still constipated & allergic to some magnetic waves in stores. Quercetin has been a life saver in being able to go into stores. My heart breaks for anyone looking for answers at the Dr office. Thank u for this video. Very helpful. I look forward to the documentary.

Oh my goodness, I can't emphasize enough how grateful I am for all the studies you linked in the description. Luckily I am a scientist and therefore capable of understanding those. In Germany I had to become my own "doctor" to manage these symptoms, as geneticists only care about the test results (which come back without findings for hEDS) and most doctors have no clue about MCAS or comorbidities. But with all these scientific infos at hand I feel equipped for a new run for help from specialists. If there are any folks from Munich region, I'd be happy to have further tipps on doctors or even physiotherapists knowledgable in these fields ^^ Thanks and all the best to all hEDS/MCAS affected and the tireless research staff out there <3

Now I know why I can not fly and get so sick. I can't even be a passenger in the car without getting sick. I have to be the driver, and even then at times I get sick still depending on the distance and how fast I am driving. The interstate triggers my nervous system big time.

Dr. Weinstock is my MCAS doctor and has been treating me for 6 years. We have had ups and downs, bit he has always been great and very helpful, but most of all caring.

Took some antibiotics (flagyl) a few months ago and this started my nightmare. I am now housebound with symptoms of this triad. It is completely awful. I was a very active super healthy 33yo. Was given flagyl for a minor perioral dermatitis. I am now housebound, on disability and unable to walk my very active dog (she is just like how I was 4 months ago). I am losing hope. I have lost all of my muscles, my periods, 10 pounds, I have no collagen anymore, headaches, heart palpitations, POTS, EDS, MCAS and I do not want to live this way. I still cannot believe it. It’s a freaking nightmare. Flagyl is known to cause CNS damages, I was never warned about it.

I am not trying to brag, but I have been using these therapies (bioflavanoids, high dose vit.C, bromelain and quercetin, anti-inflammatory foods) for myself for years to control my symptoms of POTS and MCAS. I’ve had many Dr’s gaslight me before I had my diagnosis, but followed my instinct and what I had learned through natural medicine to treat myself. My symptoms are practically non-existent now at age 53 verses 18 when I was miserable and suffered 2 anaphylactic episodes. I also want to say that I do believe the depression and anxiety that seem to be co-morbid with this cluster, is not necessarily secondary as my brother who was suspected of having EDS, but never suffered in the way of pain, mostly allergies. He had chronic anxiety his whole life. He took his life in 2011. My son also has had severe anxiety his whole life (starting at age 3-4) before we ever discovered he had EDS and POTS. I think there is an underlying connection w/ the gut and autonomic nervous system that contributes separately to the mental problems.

Boy, I wish we had a universal health care system! I have been suffering all my life and cannot afford to go to anymore specialist! EDS, POTS, MCAS, chronic migraines, chronic GI issues, fibromyalgia, malnutrition, “cerebellar tonsillar ectopia” has me BROKE!! So tired of trying to get help in a broken system!

Dr. Ruscio, Thank you so much. You saved hundreds of hours required to know/ research this valuable info. ❤❤❤

Vitamin B1 can also be very helpful for POTS.

Thank you enormously, Dr Ruscio, for discussing the history of the publication's reception, including dates. THAT is the kind of information we need for critical thinking, especially when we like to entertain conflicting opinions.

Thank you so much! I was officially diagnosed hEDS less than a year ago. Recently diagnosed with POTS, MCAS... not fun at all. This information is greatly appreciate.

This has soo much useful information in, thanks guys. I’m sure I suffered POTS when I was in my teens, I had a couple of years where I just kept fainting all the time… obvs ignored by the medical profession as they didn’t have a clue what was causing it, they put it down to my hormones. I’ve suffered allergies, eczema when I was young, then exercise induced anaphylaxis during my teens - 30’s, then the joint pain started in my 40’s and has never left me. I’ve dialled in my diet (although I’m struggling to get my head around fodmap whilst still having a life!), not overweight although that’s been another lifelong battle. I was a fitness instructor and yoga/Pilates teacher, but have seen a steady decline in my ability to do any form of exercise since my early 40’s. Now in my late 50’s and really fed up with being in severe pain 24/7, my knees grind when I squat, there isn’t a vertebrae in my back that doesn’t hurt and I have brain fog. I’m sure MCAS/mould toxicity could be the key but all the docs want to do is prescribed NSAIDs which I refuse to take. Sad to hear that yoga isn’t great as I’ve always loved it and it’s the only thing I still do (nowhere near how I used to). But aside from that, it doesn’t usually affect my mood and my ankles don’t hurt! 😂

Late to this party. Fantastic video. Thank you for the content. A Dr with common sense and deep knowledge of the subject 👏

Thank you so much, this information will help me to gain my health back

Some people are born with it. Some EDS folk have mutations on their collagen genes or genes that affect the collagen, and so from birth they do have it. MCAS can absolutely make it worse, like it is mentioned, but some folk really are born with it.

I have had major depressive disorder since I was 14, I'm now 20. I genuinely cannot remember a time within those years where I wasn't at least a bit depressed. I've tried so many different medications and they sort of help, but it always comes back in the end. That combined with anxiety, ADHD, and the MCAS and POTs symptoms really makes me wonder if my physiological issues have been caused by something physical this whole time