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

[@DrRuscioDC]

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.

[@melaniemoore5635]

EHS, and MCS is connected with MCAS as well.

[@melaniemoore5635]

Ketamine helps me immensely. It also takes away pain and hives. I microdose it.

[@margaritaramos4269]

What about weight lifting for POTS

[@brendabrenner2891]

Tu! This was goold to me. I am long cov, long Lyme, celiac w gut dysbiosis, mol injured, + now systemically dysfunctional! Was pre med, see 19 Drs, + none can connect the dots.. Drs trained 25 years ago have no training in the gut/brain connection, so can't think outside the box.. wondering how I can connect with you, am in RI.. felt like I was in an excellent med class.. REALLYresonated with me🎉❤

[@maryr7593]

Please don't leave out Hypermobility Spectrum Disorder....it is very similar to EDS...a connective tissue disorder.

[@dalaniekolakowski181]

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.

[@lovethelifeyoulive2023]

Sending you love and light

[@hinajaved1826]

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[@hinajaved1826]

@@lovethelifeyoulive2023 t is

[@hinajaved1826]

I w the we’re era we- clawed ve C cqqe

[@ksmith3666]

Thanks for this comment! Confirmation that im not crazy. The doctors haven’t helped at all, but sticking to the carnivore diet and Quercetin & bromelin has helped faster than anything else. Uggghhhh why isn’t this studied more?! Mold has really messed with my system a lot

[@maryyarwood4691]

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.

[@perranmaid]

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 😢

[@smackamoe]

I understand. I've seen doctors assume drug addiction because of pots and the rest of the comorbidities.

[@perranmaid]

@@smackamoe 🤗💕

[@smackamoe]

@@perranmaid I know you have been round and round with doctors over the years. I understand. However if I may suggest a strict carnivore diet, you may find relief from many symptoms. My family member has been on carnivore and has seen improvements. I'm not saying complete healing, but the quality of life has been greatly improved. There are doctors on KZbin advocating for carnivore diets, find the ones not trying to sell a product.

[@joeynarciso94]

@perranmaid, WHUUUT??? Are you in USA? Unbelievable!! I 've had MECFS x two decades and started having syncopal episodes in middle school in the early 60's so lots of decades of dysautonomias of different sorts actually. Started having weird rashes in the 80's, kind of turned into a lupus rash in 2013 which was totally misdiagnosed of course. Don't have SLE but rather an overlap autoimmunity called MCTD which can cause a mild form of lupus I guess when it feels like it. That MD also nissed my CVID diagnosis which is actually what leads to the autoimmunities in the first place but I had 19 specialists at one time for basically just all these interrelated diseases. Ridiculous! Since my two papillons and I about got killed by a neighbor's 2 german shepherds on shock collars who came charging out their front door just to go after my 5 lb dog and shake him to death and then, had I not managed to stay on my feet flailing my arms around and screaming hysterically while twisting, turning, waving my arms around and consequently fracturing two lumbar vertebrae, those dogs would have then killed my 8 lb dog as well right in front of me while likely rearranging my whole face and even causing internal damage as in engorging me. With all my PTSD associated with that incident, well, too bad the guy is a cop and so I then was hunted down by the PD in my own town 3 times, threatened with being arrested 2 times, of course lied to repeatedly, and the NCDOT actually pulled my drivers' license with what I consider to be a perfect driving record and yet they couldn't even tell me why!! Those sociopathic cop family people have now cost me many many hundreds of dollars and are now about to cause me well over a hundred grand which would be even more if I were younger being I'm about to move which entails a brand new mortgage at nearly twice the rate as the one I've got now. One of my points is you got sociopaths everywhere (1 in 25 roughly depending where you are) and also, due to that incident, my gut symptoms began to go through the roof within 2 days flat. I ended up 2 days afterward (prior to when my back spasms really started kicking in at a restaurant with comfy couches with out of town friends who came to celebrate my birthday. Managed to eat 4 tiny bites of food in a hour, suddenly had to run to the restroom where all hell broke lose, my gf finally came in to see where the heck I was, and feeling super lucky that day I was wearing black pants, she had to follow right behind me like we were attached at the pelvis so nobody would notice what was smushed all over my pants. Well in these ensuing 9 months things really haven't gotten any better - still can't eat, can't stop pooping, still certainly have all symptoms of the evil trifecta going strong particularly in the pain and the gut departments, still feel like hell, hate my evil neighbors, trying to move in spite of barely being able to stand up without passing out, plus I'm running out of money due to paying people 30 bucks an hour to do most everything for me from driving, cleaning my house, doing all my yardwork, repotting my plants, and it still kills my lower back just to lean over the kitchen sink doing dishes for more than 5 minutes let alone standing over my laundry sink for 15 minutes apiece in order to bathe my two little dogs whose lives I somehow managed to save.

[@joeynarciso94]

@perranmaid, As far as you and me and your friend, guess we're all kind of similar - have basically been spat upon by society and then I have so much trouble just differenyiating my MECFS sx from my dysautonomia sx at this point plus all these other co-morbidities can just get all mixed up and super intermingled once they reach a critical point of just being tok many similar things. What to do about and fir your friend?? Well, what you're doing primarily plus your friend really needs to do such things as well - simply educate yourselves. Any yet I know how to do that one well partly due to having worked in the medical field x 30 years. Firstly you need to have a fairly good grasp of anatomy just in order to understand medical terminology. Once you know some anatomy learning medical terminology can be a breeze! Wouldn't have known that from my last pain doctor who fired me before I could fire him as, seriously, don't think he ever grasped how to decode the sime words "MYALGIC ENCEPHALOMYELITIS" after over 4 months of practice and then even going into his office with this sign I made around my neck which he thought was "cute" and then took a "cute" video of me explaining about my little sign. I recall in OT school for medical terminology some instructor throwing a bunch of fat handouts on a table like on a Friday and saying, "Okay! LEARN IT!" Then you need to have PubMed set up on your devices and everytime you google things you'll be reading the same things that doctors will be referencing and learn how to determine what constitutes a bona fide proper scientific study, and then get your act together further by knowing the ICD codes of all your major illnesses that you can spew off, you can look at what the curricula are in med schools, I have a book I saw advertised online called Hanson's Anatomy by Katy Hanson that is actually her med school notes with drawings and all the different systems. Additionally it would be very helpful to learn some basic communication and assertiveness training techniques such as how to utilize I messages rather than you messages, how to stand your ground assertively when bullied (so iow getting what you want without pissing people off), and just being super organized by going in with your prioritized list of what you need to talk about and simply take the lead from the get go , using phrases such as I understand where you're coming from, however ... , and I could go on and on. Maybe get a new doctor?? Get outta town?? Have them show you your records proving you're an addict for crying out loud?? What actual proof do they even have?? Can they actually show you your blood or urine tests with the objectifiable incontrivertible truth?? Just refuse to believe it since it's not even true? Ask how do they know they're not getting your records mixed up with somebody else's? Otherwise I would utilize way way more statements of facts and avoid asking questions which just gives them the upper hand and makes you look more like a lost, helpless little child - exactly what pompous bullies prey upon. And trust me, since you can look up the average IQ ranges for every profession online, MDs are just seriously generally far from being geniuses at all. That's more of the purvue of research scientists and nuclear physicists and etc. At least for me, I can counter with my own story of how I simply had to take the MCAT @ Berkeley in 1978 simply to get into OT school, never bothered to study whatsoever since it didn't even matter to me, had taken only one chemistry class in my life 1.5 years prior to and sort of had a 2 year degree in biology and I managed to shock the heck out of myself by pulling in a 98th percentile on the chemistry section and then I got a 94th percentile on the bio which actually shouldn't be surprising at all, and I'm certainly no genius myself so there ya go. Most of those folks just wanted to be doctors and most worked really hard at it. Social service agencies ... there have got to be some social service agencies! APS?? ACLU?? Ask an attorney? I've used an online legal service about the nasty dogs or rather nasty dog owners since those dogs, trust me, were actually purposely trained in those behaviors. It's called I believe Ask a lawyer or some such thing. I mean seriously, how can they even do that in AMERIKA????

[@Jolei33]

Yes! Me and my son was perfectly healthy when we moved into a “luxury” apartment for four years. We suffered with episodes of flu like symptoms but with allergy like symptoms. Suffered with throat closing and itchy skin, flushing, shortness of breath, heart palpitations and extreme fatigue. It reached a point that I didn’t sleep for 10 days just quick naps. The ER thought I was crazy. Overtime the mast cells wouldn’t calm. I was this way with migraines for months, vertigo and unable to drive like the doctor describes. If my son didn’t start showing the same symptoms I wouldn’t have thought it could have been environmental. I believe heavy EMF and mold can cause this. I have never had any allergy issues or any health issues my whole like until 47. I believe anyone exposed to certain toxins or dangerous electromagnetic waves can be injured by this with disruption and cause MCAS. We are 13 months moved and we both are almost completely recovered. Still sensitive to certain foods, temperature and too much stress on the body or mind we can both be activated but symptoms are much milder. My heart goes out to anyone who is suffering with this, ❤

[@kelsiwasherelol]

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.

[@tl9859]

Where is Dr Weinstock located?

[@shauser2000]

Where can we find him to work with him?

[@vickigothard1564]

Apparently, he does not take new patients if they had not had the Covid vaccine yet. I’ve been trying to get into them for two years.

[@davidkruse4030]

@@vickigothard1564that’s crazy. What a stupid rule

[@Truerealism747]

Do you have to prove you have had them ?

[@Timeless_Lea]

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.

[@Truerealism747]

I have eds fybromyalgia autism ADHD muscle pain is now worst symptom.upperbody do you have this

[@Truerealism747]

It's autism

[@donnacostarella4241]

Been though this same shit and gaslighted too. I’m 67 learned so much struggling with compressions now and all symptoms worse with vax which I was scared into didn’t want it. I do lots of what you do as well just this long flare escalated all I’ve had 6 infections including shingles grrrrr

[@Timeless_Lea]

@@Truerealism747 Pretty much, yes. I take Boswellia for pain (Cox-2 inhibitor), and use castor oil and boswellia topically on joints.

[@Truerealism747]

​@@donnacostarella4241do you have àspergers with us if so that's why vaccines are a no go not required

[@audreywalker6202]

Plantain herb, moringa powder and magnesium threonate has been a game changer for me for MCAS. They are all mast cell stabilizers

[@Truerealism747]

Has it helped pain

[@DMAC1301]

This just amazes me. Everything fits. Why has none of my drs put this together. As I listen it’s so clear.

[@allisong2159]

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!

[@TeresaLipot]

@allisong2159, My MCAS, POTS, was triggered in 2009 following a mold exposure. Also eventually Dx with EDS. I have found Low carb Carnivore/Keto Diet highly beneficial for reducing symptoms, including pain and off the majority of my prescription meds. Google "Carnivore Doctors".

[@Truerealism747]

I have the same with asperger's how is your cholesterol how do we no what's causing what have you got CCI to

[@Truerealism747]

My neurologist says my pain upper body is migraine no headache

[@TeresaLipot]

I have EDS, MCAS, POTS, Fibromyalgia, Chronic Fatigue, Hashimoto's, osteoporosis and Intercystitial Cystitis Dx. After trying multiple diets, over the years, I found a low Carb/Keto/Carnivore diet MIRACULOUSLY healing for these conditions. 15 years of POTS disappeared after going high protein, high fat and adding lots of salt. NO calorie counting. Only paying attention to daily nutrition and increased calories. I'm convinced that MCAS impairs absorption, which explains the initial weight loss, then advances to malnutrition. Take anti-histamines to eat the most nutrient dense foods, if necessary. Google Lions Diet. As your reactivity and INFLAMMATION IMPROVES, so will your ability to eat a wider range of "Carnivore foods", but starting on salt, beef water will be fine. I'd include a Carnivore friendly electrolyte drink like LMNT. I'm off of more than 10 Rx medications and MCAS related pain disappeared in days. I've lost 70 pounds. I consume more than 60 grams of protein daily. I eat beef with lots of ribs eye fat, cottage cheese, as many eggs as I want fried in bacon grease or butter, hard cheeses, sardines, salmon. I have never felt so satiated in my life. Did you know animal based fats make "sugar cravings disappear?!? (Fat is healing for Hypothyroidism, see Dr. Elizabeth Bright.) I do add non sweetened Kefir (probiotic), half cup frozen wild blueberries (pre- biotic), Colostrum and Collagen due to gut biome issues following 25 hospitalizations which involved 25 doses of IV antibiotics. I'd urge everyone to Google "Carnivore Doctors" for healing and health. Did I mention my IC disappeared after years of being told I'd experience, excruciating Pain for the rest of my life??? Doctors don't know EVERYTHING. They know less about RARE DISEASE. After 30 years of working in "healthcare", I realized I'd better take my life/health into my own hands or hire a Carnivore Coach like Judy.

[@pollycook7692]

We have a universal health care system in UK and it's terrible!! They don't have a clue about MCAs or indeed anything and I have ended up forking out thousands for holistic treatment .. You are not missing anything!

[@laura5425]

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

[@mayah3061]

@@laura5425 Hello Laura, im from Germany too. Do you feel better? Im fron RLP not from München. Did you find help in Germany? Liebe Grüße Maya

[@alinacaat4992]

Hi liebe Laura, Ich bin aus Karlsruhe und befinde mich in einer ähnlichen Situation wie du. Auch ich bin auf der Suche nach Spezialist*innen, die mir weiterhelfen können. Vielleicht können wir uns dabei gegenseitig unterstützen? Ich würde mich auch sehr über einen Austausch freuen, da ich mich momentan echt alleine fühle mit diesem Weg und den ganzen Informationen. Ich würde mich freuen von dir zu hören! :) Alles Liebe für dich, Alina

[@laura5425]

@@alinacaat4992 Oh cool, ja, hab auch Interesse an Austausch, aber weiß gerade nicht wie man den Kontakt hinkriegen kann. Direkt vorweg: ich hab nämlich keinen Insta-Account oder so... Hast du eine Idee?

[@alinacaat4992]

@@laura5425Facebook dann vermutlich auch nicht, oder? 😅 Weil hier öffentlich die E-Mail oder Handynummer posten ist doof…🙆🏼‍♀️ Ich überlege mal.

[@AdeebaZamaan]

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.

[@Antoniathinks]

IBS, MCAS, SIBO/dysbiosis...to retune my touchy MCAS body with EDS with cold water therapy...super cold Wim Hof method reduces my bone pain but I cannot return to the cold dosing until 6 mos from now when chronic leukosytic leukemia is over. Thanks for explaining the glass knives in my bone marrow sensation I have had all my life since infancy. It may have been in my brain/body but I have always known it wasn’t just my mind. I do serious meditation and without it I wouldn’t still be here. 😂 I also worked with others neurological conditions my whole career, which is great for keeping a highly attentive mind/limbic system from rumibation. Its all about solutions here. Exercise is aquatherapy for the past 35 years. Saves my life!

[@ascolari]

This video just came up on my feed and now I know I’m on the right path. I asked my naturopath for a prescription for LDN because I have PCOS, EBV, Ehlers Danlos, and I suspect MCAS, and POTS, which I thought I grew out of. I used to faint all the time. Anyway, I’ve heard that LDN helps all of these and now this video confirms it!

[@Truerealism747]

Ldn helps fatigue and IBS but isn't helping my fybromyalgia pain I had pots years ago which changed over time

[@lindajakub624]

What is ldn

[@lindajakub624]

What is LDN??

[@Truerealism747]

@@lindajakub624 low dose neltrexone do you have heds fybromyalgia

[@vanemc73]

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.

[@Truerealism747]

Do you have fybromyalgia symptoms ti

[@nicoleheroux5749]

My joints /bones are so old. Where is this beautiful dr?! Desperately seeking and it’s harder than just leave the house due to anxiety and fear and pain

[@pacificangel7]

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.

[@Theantinarc]

Me my sister and paternal grandmother all were born with this

[@Truerealism747]

​@@Theantinarcwhat were your first symptoms OCD ibs?

[@Star5dg]

yes I agree - my kids very young have been diagnosed with EDS

[@Truerealism747]

@@JDubzDrumz me to but not diagnosed until 43 fybromyalgia worst symptom do you have autism to

[@katiedid7028]

I have celiac and I accidentally ate malt after 6 years of doing ok right away my body feels like crap no pun intended 🙃

[@PayPalEspana-mg5oj]

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

[@kerrysue9280]

In Jesus' name, I pray for your complete healing and a full recovery! Amen!

[@magdelinalee2101]

God bless you 🙏 😊

[@amysantos-qh4id]

Praying in the nane of Jesus.

[@SamiMusic4you]

Healing ❤❤

[@catherinelarose4928]

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.

[@smackamoe]

My daughter had a similar situation. A strict carnivore diet helped her.

[@pachuco1674]

Look into liver flushes to detox from everything that's stored in your liver. Toxicity can be a root cause to chronic illness and liver flushes can help with that.

[@davidkruse4030]

I never heard of that from flagyl. I know cirpo and levaquin can do those things. I would adapt the most holistic methods into your life. You can get better. Acupuncture can help if you see a quality practitioner. Diet and nutritional supplements help.

[@pachuco1674]

@@davidkruse4030 amoxicillin and clarithromicyn ruined my health. I've been extremely chronically ill from them for over a year now.

[@joeynarciso94]

Didn't know that about Flagyl but will have to look that up. Since a basic tenet of science is "correlation does not equal causation," are you certain what you were taking the Flagyl for may not have precipitated that effect? Also, it is true that naturally it would follow that because the fluoroquinolone class of ABIs has that black box warning pertaining to ligamentous damages that it would be much more dangerous for any EDSers to be taking it since our ligaments are already super stressed out and more vulnerable.

[@topchic7475]

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! 😂

[@ecatcheshire9741]

❤❤ so sorry to hear this and hoping you find the help you need very soon

[@easy2rememberusernam]

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

[@candyland8903]

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.

[@Joan11ify]

Vitamin B1 can also be very helpful for POTS.

[@Joan11ify]

And B1 can help SIBO as well!

[@donnazukadley7300]

​@@Joan11ifywhat is SIBO?

[@Joan11ify]

@@donnazukadley7300 Small intestinal bacterial overgrowth.

[@Needless2say]

​​@@donnazukadley7300 Small intestinal bacterial overgrowth.

[@Joan11ify]

@@donnazukadley7300 SIBO is small intestinal bacterial overgrowth.

[@mauve3734]

I was diagnosed with mcas last year but my allergist wasn’t knowledgeable about it I took steroid Zyrtec Benadryl famotidine hydroxyzine each day (and still do) I can’t eat because my stomach is paralyzed new allergist is starting me on oral cromlyn and xolair (I have classical like eds) I am extremely greatful for my allergist for helping me I haven’t been able to drink water since September 2021

[@SamiMusic4you]

How is your experience with Xolair?

[@mauve3734]

@@SamiMusic4you good no hives in months

[@shoddybutterscotch4659]

I would love to know the link between these three (MCAS, POTS, EDS) and Autism(ASD)/ADHD.

[@montyham3018]

Heavy metal is the most common and likely link between each of those five

[@donnazukadley7300]

Heavy metals like mercury and aluminum in jabs? ​@@montyham3018

[@revelation12_1]

Trauma.

[@brendabrenner2891]

Gut/brain axis

[@Truerealism747]

Rccx gene theory I have them all we don't have the detox pathways also for this dirty world

[@thecrownandthecow8123]

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

[@laura5425]

I feel you. Don't give up. Maybe you can ask your physician to set you up with a mast cell stabilizer. I take it along with vit C, loratadine and quercetin (I can't confirm the miraculous effect of that one though). Get a doctor who's keen on reading up on the papers and who does the testing with you! All the best

[@leopardappygirl]

I had MDD doc told me to try L-methylfolate 15 mg day. It saved my life and its cheap over the counter.

[@louisejoel]

Genes related to methylation may be affecting you. Try searching Dr Amy Yasko for info.

[@MamaMia914]

@@leopardappygirlfor depression?

[@leopardappygirl]

@@MamaMia914 yes. Doc said some people do not absorb folic acid properly thus causing depression. He described L-methylfolate as pre digested able to cross the blood brain barrier. Also, remember scripture says for the spirit of heaviness put on the garment of praise. Derek Prince has a video describing how praising the Lord drives away spirits of depression.

[@darthyoda216]

Please have a look into zeolites. It seems to be wonderful to bind chemicals, heavy metals and... yes... Histamine! Good point on mentioning trauma btw. The stress of it drives gut issues (and histamine) too.

[@lilydauber3147]

heavy metal toxicity can contribute to mast cell disorders, which in turn can be a root cause of histamine intolerance. If you are experiencing histamine intolerance and suspect that you have been exposed to heavy metals, then it is important to take steps to address the issue.

[@kevinjhassett1680]

Yes I used a product by Vitality it had zeolite in it. Place 10 drops in a cup of water and drink. They say that this product it can remove toxins even from the brain.

[@kevinjhassett1680]

Yes I used a product by Vitality it had zeolite in it. Place 10 drops in a cup of water and drink. They say that this product it can remove toxins even from the brain.

[@Truerealism747]

Any side effects

[@Lionessliving]

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

[@Chris-g9i]

Regarding exercise: I was a very fit, active person before Covid triggered Pots. I love exercise and I love to push myself. However, any time I tried to push myself after Covid, I got super ill for several weeks and had to start all over. It’s hard to figure out whether MCAS or other auto immune diseases are behind the constant sicknesses, or if high impact exercise just makes Pots much worse. I would love to work out harder and have to actively reign myself in, but for me, it seems to have made me worse rather than better every single time, which absolutely sucks.

[@dva62004]

Yes, I have been healthy and active since my youth. I have POST COVID-19 POTS Syndrome and am awaiting a specialist to test for MCAS. It has been a horrific over four year journey. I hope and pray that I can find the correct specialist soon to help me. My bones are now fracturing. Before getting COVID-19, my bone density tests came out perfectly fine. I pray that people all across the world understand the ramifications of contracting COVID-19, and stop spreading it to others.

[@dva62004]

Chris, I too, suffer when I try to exercise and push limits. Just vacuuming or trying to wash dishes makes me weak and triggers the POTS Dysautonomia problems. I totally get what you are going through. Absolutely.

[@l.mcmanus3983]

When I was younger, around 10 or 11, I missed months of school due to a mysterious pain in my stomach. My mom believed me and took me to to different doctors trying to find the cause. No one could find anything wrong. Eventually the pain went away and I was able to go back to school. One of my clearest memories from that time is feeling relief from the pain while sitting on a toilet leaning forward so my front touched my thighs. I could not stay like that all the time though. 30 years later (with a fairly new diagnosis of h-EDS) and I am convinced that my pain was Median Arcuate Ligament Syndrome. I only read about the symptoms because MALS was mentioned by authors talking about h-EDS. I was lucky enough to have it go away, I guess because I was young and still growing so things shifted enough over time that I got relief. I wonder if it occurs in children more than is reported, but is never diagnosed because the pain resolves before exhaustive investigations are made.

[@ecatcheshire9741]

Thank you for posting about median arcuate ligament as I wondered about a potential link with my habitual sitting position: (edit) further research - a connection with MALS unlikely in my case. hypermobile and sensitive to vibration, POTS symptoms age 7 to 20. I habitually sit as you described (when home alone) as it relieves discomfort. Also remember my dad always perched at the front of his easy chair folded at the hips.

[@l.mcmanus3983]

@@ecatcheshire9741 Thanks for letting me know you found my comment interested enough to investigate. So many symptoms I have had over the years have been vague or nebulous, easy for doctors to dismiss as normal or not anything to worry about. So I was hoping by posting this comment it might turn on a light bulb for someone in a similar position to me. Even though it didn’t turn out to be related to your situation, keep investigating and learning! Your health and comfort are worth it! In the spirit of sharing more knowledge. Do you use compression stockings? They have allowed me to function so much better on a day to day basis. So worth trying, even if it is just knee high socks and not pantyhose/leotards. But one extra thing that has helped me (and I have only seemed mentioned one place) is wearing shapewear in addition to my compression pantyhose. The extra abdominal support has improved my digestion and reduced issues that I have had with bloating, cramping, constipation, and general discomfort. Just something to consider if you want to. I wish you the best. If you want more info, let me know.

[@littlebirdfpv]

Salt stick (a brand of sodium tablets) have been huge for me. I also wanted to mention at the lowest point in my chronic illness journey I found my epstein barr levels (4 different markers were presented) and while it was not present in my body as an active infection, the levels were all unbelievably high. One of them was greater than 400! I had a sodium deficit in my blood work as well as consistently high liver enzymes. This all started around the time of getting the last dose of my gardasil vaccine and having a week long reaction to a live flu vaccine. It never seemed to go away. Shortly after this I was unexpectedly diagnosed through a MSLT with narcolepsy when seeking help with terrible insomnia. I think it is all linked.

[@kevilinak]

I have an active Epstein Barr virus and it catapulted Mast Cell issues. But I’ve had obscure problems for years. So I’m sure it’s all connected (minus the vaccine).

[@tinypwincess333]

Those tablets have corn sugar in them. Take electrolytes without additives and eat whole foods

[@littlebirdfpv]

@tinypwincesss good to know they aren't super dense with nutrients but are useful for me as a tool. I'd rather get them from food but in the middle of a work shift when i havent packed all my snacks, that's not always an option. My diet is very clean so I'm not super worried about corn sugar.

[@kimcoons3322]

My daughter is 18 and has been bedridden over 5 years. She was a competitive dancer and now lays in a dark room most days. She is on H1 and H2. She's had a sore throat for 5 weeks and a cough for 6. Seeing immunology this week. Her doctor at John's Hopkins wants her to try LDN. I cannot figure out her triggers!

[@revelation12_1]

Have you tried a low histamine diet? Have you eliminated all common triggers like gluten, dairy, soy, sugar? Adopt a Whole Foods anti inflammatory diet. Also there is autonomic nervous system conditioning that can help. Does she have ME CFS?

[@Truerealism747]

​@@revelation12_1you mean Gupta training CFS 27 years muscle pain now worst I have heds diagnosed asperger's ADHD genes but unsure which is mcas cci causing what candida etc

[@CovaRevival]

You absolutely need to check for hidden mold in your house. Start with an ermi.

[@Truerealism747]

@@CovaRevival what is a ermi

[@audreywalker6202]

Get your house tested for mold. It's a big trigger

[@julierogers4473]

Please for God's sake tell everyone not to take any kind of benzodiazepine or any kind of antidepressant. I got diagnosed with this all too late. Diazepam has made me a hundred times worse than what I was. It's eating what college am I had left. And now my heart's all messed up again. I had a cardiac catheter ablation for SVT in 99. Now I know it wasn't SVT it was pots linked to EDS 🥺😞

[@micromantis4150]

This maybe true for you, but you may want to educate yourself that every mast cell has a benzodiazepine receptor on them. I’ve had MCAS since 2008 and in severe shock attacks requiring an ambulance and sometimes hospitalisation, low dose of benzodiazepines (Valium) were very important to settle the reaction. My haematologist also has it included in my urgent care plan.

[@julierogers4473]

@@micromantis4150 I know for a fact, it caused all my underlying health issues to come out screaming.. it is a neurotoxin poison. My entire body has been poisoned now and I'm going to lose my vision. Blood pressure 02 stats is out of control because of this poison. I didn't have any of these problems before this.

[@BarbaraMichenzi]

I was on a benzodiazepine for 10 years and just quit taking it and I've been sick ever since. It's almost 6 years now. I'm sensitive to everything, can't handle any stress, can only eat 5-6 different foods. How can I take anything if I get bad reactions to the slightest things? It's a nightmare!

[@julierogers4473]

@@micromantis4150 I have educated myself and it did cause mast cell! From the toxicity.. it destroys your entire body

[@joeynarciso94]

@julieroberts4473, Sorry but totally not true for everyone whatsoever. I for one do much better on my regimen of 5 mg diazepam BID prn similarly to what the other person was saying.

[@TheNaturemama]

Took me 5 years and 22 doctors from a variety of specialties, including a trip to Mayo, before I was finally diagnosed with MCAS. I had to leave the state to get diagnosed. Mayo even misdiagnosed me.

[@pennywillis8895]

🇦🇺Dr’s aren’t interested in knowing more about a syndrome. I’ve seen many GP’s and they aren’t interested in knowing more. I’ve asked if they could refer me to a EDS Dr, only to be told there are none. I live in Logan, Queensland Australia. I’ve had 21 surgeries, I started dislocating my knees at age 12, I’ve torn my muscles from my shoulders. I’ve now had bilateral knee replacements and then needed adjustments to both as I was dislocating the knee replacements. I was 50 when it was suggested that I had EDS by a Dr from a pain clinic I was attending.

[@ecatcheshire9741]

So sorry to hear your painful journey. I pray understanding of this syndrome can spread and you can access the doctor you need soon. 🙏🥰

[@truescotsman4103]

I've been suffering from this my whole life. I've learned to manage it. I just discovered this three days ago and I have this combination of three conditions. I've had this problem since I had hives when I was a boy from playing with caterpillars on a plant. Ever since that incident I had all of the symptoms of these three disorders. I'm still shocked how closely my symptoms match and how I've learned to manage my disease. I haven't been to a Dr in 10 years because they could never figure out what was wrong with me so I stopped going. I modified my diet and I take allergy medications among other life modifications.

[@sarahb.6475]

Low fodmap never did anything for me - I tried it for 4 months. I saw a new PCP yesterday and I think I have a corn allergy (or reacting to corn + all corn derivatives via MCAS). but I sure react to corn - have been for years. Back in 2018 I got itchy face when others were boiling corn. Plus other symtoms. Now I am getting a tight chest + a feeling of no air in the air feeling when I am exposed to hidden corn in products - I was just trying to get needed potassium but it has corn in it (as I am living on 3 foods and cannot get anough potassium from what I can eat safely).. Dr is sending me to a new allergist (as the previous one was not helpful at all). And yes I have EDS. Most likely hEDS. At 51 I am still hypermobile in all of my joints. Plus I have autism too. Plus my new PCP actually knows about EDS! But this corn hidden in everything is a huge problem. Its used everywhere. On fruit too. Like bananas + avacados are gassed with a corn based gas. If I eat a banana I get all ear ringing. I once waited 1.5 years before trying to eat a banana again - I was able to eat 3 safely but then all the symptoms came back including the ear ringing - so being able to eat 3 bananas in 1.5 years is not helpful diet wise. I get that gas feeling all the time. Bloating + burping! I look bloated after I eat every day even my safe foods. Sometimes the gas gives me chest pain + it goes away (the pain) with burping. I get restless legs too sometimes. It either goes away by taking iron, B1 or calcium/magnesium.. It depends which I am low on.. I do a lot of walking. My EDS is mainly gut issues + in my arms. But my knees are hypermobile + so are my feet. I cannot wear shoes with arch support or those raised heels. All that stuff over the counter has corn in it! Years ago back in 2019 I tried taking a simple limited ingredient cough drop - but it had corn - made my jaw get all swollen! Luckily I go everyday. That is why you need potassium... Many people these days are deficient in it. I get POTS when I am exposed to my allergen. Otherwise it doesnt seem to be much of an issue. Like last summer I tried eating nevtarines every day - 1 or 2 small nectarines (and I was not eating any other fruit or sugar - so just the nectarines plus the meat × sea salt). The nectarines made me very bad potsy! I read peaches can cross react with corn. Plus who knows what it is sprayed with (and I read that corn derivitives can be in organic spray).. But when I eat this stuff it can cause my heart rate to go from 55 up to 114. I do lots of walking. Long distance walking. Keep leg muscles strong. Drink water + get salt. I vasically walk everywhere I go (except a car takes me to the ranch). I can run (or sprint I should say) but I dont because of my knees. I did not have pots by the way until I ate a bunch of wheat on purpose for a celiac blood test. But I have lots of energy. 😊 But this potassium problem + corn allergy is very hard to deal with!

[@lazzatbastar3497]

If you have food allergy, then best is to try carnivore diet, which is all meat diet. In last videos Dr. Berg (keto specialist) mentioned carnivore for sibo patients. Also Dr. Ekberg gave information on effectiveness of carnivore. It is about meat and animal fat and zero carb(including zero fiber), so diet contains no plants, including toxic plant chemicals (lectins, oxylates, saponins etc) people could be sensitive to. Almost all allergic things are plant based, except for casein, lactose.. Dr. Natasha Campbell (gaps diet creator based on fodmap diet) also promotes carnivore for for gut or nerve system related diseases. I have sibo from childhood after big dosages of antibiotics I was injected periodically throughout my life when I would catch cold etc. I found out about carnivore this Spring. And started non -strict version of carnivore with diary (cheese, milk, kefir, heavy cream, dried cow milk in my white chocolate homemade) eggs, butter/ghee and beef with tallow and lamb butt fat (like ham). So my massive bloating I had whole my life (especially after eating or by evening) almost gone. After 40-50 days i added back celery, tomatoes and cucumber and get all symptoms back. Then after some rest started strict carnivore and after 1 month craved eggs very much, may be due to acetylcholine they have or omega-3 etc, I have a high stress life too last 20 years with PTSD, hidden depression etc. So added back eggs with 100ml milk in my 1 cup of coffee once a day. With strict carnivore (only meat and animal fat, ghee and bone broth for my leaky gut) without chicken eggs and diary I had better results. Get rid of constipation too. I always thought that fiber/fruits/veggies are needed to have bulk, gut motility and hence bowel movement. But I was wrong. With eggs in my carnivore my bowel movement is not regular. With strict carnivore (only meat, fat, bone broth, some ghee/butter) I have daily good bowel movement. I have sibo methane and/or candida/sifo, never diagnosed it/them through lactulose test, we simply don't have that in my central asian country. Diagnosed myself due to symptoms and the treatment (anti sibo and anti candida) that works. Wanna try probiotics later. With lacto-bifido, boulardi and soil bacteria strains. Couple of days ago I tried sauerkraut that I made. Got bloating back. Conclusion is that fiber is killing me. Now drinking the sauerkraut juice (no fiber) and will make drinkable probiotics juice from fermented veggies like kimchi etc. I have kefir grains too. Used to drink homemade kefir from whole milk. Never felt something positive for my gut from drinking kefir, yogurt etc. Only feel something positive when ate spicy food stuff like fermented salsa, i.e. fermented tomatoes with lots of garlic and horseradish root in it, or fermented spicy pepper or moderate spicy kimchi. Although we don't eat spicy food in our culture. We are nomads, ate lots of meats before. Now not anyone can afford to buy 1 pound of fatty meat daily for carnivore diet.

[@lazzatbastar3497]

One thing to mention. On strict carnivore losing weight is not problems. Eating only meat and fat makes you eat less. You simply don't have much appetite. Out of 20+kg overweight, I dropped 10-12 kg being on strict carnivore. On nonstrict carnivore with eggs and diary (especially heavy cream, cheese, cottage cheese) you eat more, so don't lose weight in general. If one can make ice-cream with stevia and white chocolate from cocoa butter, dried cow milk and stevia or butter bites(from butter and cottage cheese or dried milk) on nonstrict carnivore, how one supposed to lose weight? :). If you don't eat or taste sweet stuff (stevia etc), you don't want to eat sweet things. Once you taste sweet thing, you wanna it more, imho. Now I switched to egg white only pie. Eat it instead of bread. There are lots of recipes for carnivore diet. Even pizzas, pasta etc. If you allow yourself to eat eggs, diary on carnivore, every plant based recipe can be turned to carnivore/ketovore recipe with zero carb/zero fiber. I have 8-10 kg left to lose, which I do by end of this year, no rush for that. Weight is not problem now, but sibo/sifo symptoms like bloating, brain fog, crunchy joints, low energy etc. With carnivore my symptoms lessened (clearer mind, more energy, almost no bloating if don't eat diary and eggs) but still it takes time to heal my gut and my mind.

[@dalaniekolakowski181]

Go carnivore diet. Sounds like u have mold & SIBO

[@partenopem606]

For me foodmap low histamina oxalate and salicitate low diet start work Excellent after 6 mounts. Resveratrol quercitin curcumine montelukast bit d zinc magnesium artemisia and melatonine help me a lots to control most of the symptoms also when I’m very bad moments

[@amel2784]

My goodness. You are facing a lot. God grant you wisdom and bless you with improved health. I would be interested to know if you've tried digestive enzymes and the response.

[@alejandropower]

I don't know if I have MCAS, but since August 2023 I have been going through different horrible symptoms, and after december my life became hell. I can't eat plenty of things because almost everything causes me reactions. My reactions can occur immediatately after eating and for some days. My symptoms include: fatigue, leg pain, low blood pressure, migraine, pressure in the head, chest pain, weird and pounding palpitations, postural orthostatic tachycardia, bradycardia, gerd, bloating, gases, shortness of breath, intolerance to heat or cold, reactions to exercise and minimal physical activity including hypenventilation, palpitations and presyncope. The worst of my symptoms is lethargy, this one happens usually after eating, but I have identified triggers... this lethargy makes me feel as if I am dying, I feel my body's heavy, and I can't even move, I can't properly breath and my cf slows down, I can't keep myself awake, and when I fall asleep I immediately wake up gasping for air, this is horrible when it happens. I have withdrawn foods such as fresh fish, tuna, milk, cheese, yogurt, cereals, corn, sugar, fruits, meat, pork, processed meats, avocado, legumes and even cassava. I had hyperthyroidism for 5 months and now I have normal thyroid levels, but I lost about 9 kg. It is important to mention that I had some improvement when one of my wisdom teeth was removed as it was probably causing the hyperthyroidism I went through. I have one more wisdom tooth to pull out as it is decayed. WHAT ARE YOUR THOUGHTS?

[@alejandropower]

Other symptoms include EAR ECZEMA, sleeping disorders, and shocking during sleep, mostly triggered by foods. I have thought a lot about a glutamate sensitivity. Also, I have noticed that for some time I got better, especially when I withdrew fruits from my diet last year. But symptoms suddenly came back after eating fruits again and taking albendazole-secnidazole... In december It all became hell and probably the weirdest condition ever, as I would develop horrible symptoms just after eating or drinking water. I followed a H. Pylori treatment with amoxiciline and metronidazole, and as the treatment advanced, my symptoms worsened... oh, I also have anxiety, but it only makes things worst.

[@lindseydickman9740]

I have POTS, EDS, and had MALS. Super rare. Super real.

[@nicoleheroux5749]

Ohhhh my! 55 yo and feel like I’m dying. No one understands. Severe constipation pain osteo my swelling is unbelievable in the past 2 1/2 weeks Stretchy skin and fragile since. EDS as well as vascular . Depression has worsened and mold in this house is killing me. Pls need help in Mphs Tn.‘every single symptom brain fog lesions on brain food allergies.. ocd add I’m praying for help. Gluten dairy intolerance

[@susanlewis6000]

I have all three of these; have had them over many years. I’ve tried Low FODMAP but had trouble getting enough intake (I don’t eat eggs, etc). The only medicine offered to help was 2 Ceterizine per day. IBS diagnosed in 1990. Ive had six babies. Ive done 1 year of pelvic floor treatment with little or no improvement. I have prolapse and lichen sclerosus. Ive had years of periodic, sudden side flank pain, crecendo-ing, then releasing over minutes and sightings of brownish urine as well as one sample with flecks of brownish-red and white crystal sediment (mentioned to my doctor but not able to have tested). If there is some medical help for this, I and my children would be so happy to know. I also have constant headache (17 years) and excess CSF. I now live in a part of Canada with very limited medical helps and no family doctor.

[@wendywest4890]

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

[@bocamami6188]

Curious as to the supplements Dr. Weinstock referred he has used on patients and then their mental health symptoms went away. One of my daughters has neurocadiogenic syncope and hEDS. She is experiencing chronic fatigue and depression. Doing the research and stumbled on your video. I called his office but he is no longer taking out of state patients. Crushed my heart to hear that. My other daughter is experiencing pain and swelling on both knees for months. Nothing is helping. She also has hEDS. The GI doctor's in my area are not familiar with EDS like you and Dr. Weinstock. Thanks for the video

[@julie-artfullyopen5860]

Have any of the patients taken Fluoroquinolone anti biotics because, that damages t cells and bone marrow and many FQAD Floxed patients have MCAS

[@Truerealism747]

​@@julie-artfullyopen5860my father did he had CFS I have it after a fall 26 years fybromyalgia worst symptom in ldn I have heds asperger's ADHD

[@tsage8408]

Where is a link to the MCAS checklist? Thanks

[@jayzee2000]

It took me a while but I found it by searching "mast cell mediator release syndrome questionnaire"

[@Truerealism747]

​@@jayzee2000thanks

[@lovethelifeyoulive2023]

Any research on mushrooms helping? They have helped pain in my body.

[@baileystruss7319]

How about peptides like GHK-CU for EDS to rebuild collagen and fascia? LDN did not help me.

[@Merbak8]

Recently on a 2 1/2 hr flight. Felt the vibration in my legs for 24 hrs

[@michellebasnett8167]

I also have discoid lupus. Covid saw me develop POTS. This tracks

[@Truerealism747]

Swine flu did mine but do you have heds

[@Sam34292]

So is there anything in there being a possible shortage of the enzyme that removes excess histamine?

[@julie-artfullyopen5860]

DAO Tablet supplements of pea and lentil will help to stop too much histamine

[@Bob-sk6xq]

From the start to 2:16 he hit the nail in the head for myself and my sibling and mum. Not father.

[@chaseholt3805]

Hi my name is Carrie and I have iron deficiency (anemic) problems where my ferritin levels drop below 5. Right now it’s at 3 and I have to regularly get iron infusion’s several yearly. I’ve been diagnosed with HEDS. But I have a lot of symptoms that point to MCAS & POTS could my iron deficiency be caused by any 3 MCAS POTS ??

[@deborahakey9308]

Been on LDN 3mg for a month Praying 🙏🙏🙏🙏

[@catherinelarose4928]

How are you doing? Will be starting soon.

[@SamiMusic4you]

Is LDN helping you?

[@Truerealism747]

​@@SamiMusic4youbeen in it two years help fatigue IBS but not pain

[@lindasplaylist100]

Thank you so much for sharing this information. I am undergoing testing now.

[@kimberlyrn3868]

3 of my daughters and I all have these symptoms and I think my mother also suffered from this. My oldest has severe depression that SSRI’s have not touched. She also has severe allergies and asthma that aren’t responsive to conventional treatments. My 2nd oldest has POTS, chronic hives, anxiety, restless leg. My 3rd daughter has autoimmune issues, IBS, complex regional pain syndrome, severe migraines, EDS. Chronic hives. She was getting gardisil vaccine series which seemed to exacerbate her symptoms right before her CRPS diagnosis. I have IBS, fibromyalgia, neuropathy. My questions are 1) Does this run in families? 2) Is it more likely that we have just been exposed to the same toxins but the responses are different for each of us? 3) can this be due to psychological trauma? My ex was a pretty psychologically abusive alcoholic.

[@belizejuliette7223]

Same story here

[@kizziah7777]

I have slowed gastric emptying, IBS symptoms, severe distention/ bloating, quick satiety, and chronic nausea. Instead of just Gastroparesis, I'm wondering if MSAS may be an issue.

[@mauve3734]

It is for me but I again have symptoms outside of GI rx I have anaphylaxis

[@pomelalewis3840]

Why have I been thinking MCAS,POTs,ECT is downstream effect of mold?? I've even wondered if I'm there's a relationship to between long Covid and mold. He mentions environmental toxins as possible cause. Oh well, seems like some might be overlooking mold. MCAS and POTs are discussed a lot on mold sites.

[@bonnieramirez4701]

What to do about the ibs part of this? I have been diagnosed with Hereditary alpha Tryptasemia. I see a gastro Dr Monday. I have chronic constipation. I live on miralax. It's just aweful

[@hannahgwilliam5202]

My daughter was four, we placed on a fructose free diet, which is similar to a Fodmap diet. He gas and smelly breath, bowel pain got better. Yet her reflux when off the chart bad and her stomach pain went up. We did fodmap prior to breath test, she went white, her stomach pain worse than ever, she was vomitting reflux. Too much protein and not enough starches, veg starches, I find the food seems to sit in her stomach and not empty.

[@amel2784]

Does she need digestive enzyme supplementation?

[@fdauti_ca]

I didn’t know i had hEds/Hsd. I was severely injured by chiropractic neck manipulations, which led to severe craniocervical instability

[@Truerealism747]

What are your symptoms

[@ratfacekick]

The being "scared of exercise because they are sore and tired" is such a fucking gaslight. He knows full well many of us deal with PEM or worsening of our condition from pushing ourselves but apparently he believes that to be a cognitive/limbic dysfunction. He spouts this without realizing we are almost all former athletes and know what training is and how it should feel as we progress

[@anniebollinger2830]

How do you cope with POTS while having an MCAS flare? I am unable to tolerate wearing my typical compression garments as they result in new hives. Anyone else watching this who can share some life hacks?

[@mauve3734]

Meds n fluids

[@Battery-kf4vu]

Thank you Doctors, that was interesting. Personally I've had tinnitus for several years with no hearing loss. I do the L. Reuteri yogurt of Dr Davis, which, according to him, can contain hundreds of billions of CFUs, and bizarrely it lowered my tinnitus. I just read a study saying that L Reuteri lowers allergic responses. Maybe I had MCAS or something like that who knows. I'm glad it works anyways because there's really not much that helps tinnitus.

[@DrRuscioDC]

Thank you for watching! That's fascinating about the tinnitus. Thank you for sharing that. There's definitely a link between gut health and inflammation and immune responses, so it can be interesting to see what gets resolved by gut interventions.

[@jacquidan01]

That is interesting about the bacteria. Do you have to get the source from yogurt?

[@Battery-kf4vu]

@@jacquidan01 After all I am not sure the L reuteri yogurt really make a difference for my tinnitus. If you want to make the L Reuteri yogurt you have to buy the probiotic from the company Biogaya called Gastrus. They make several L Reuteri probiotics, but it is the Gastrus that you want because it contains the ATCC 6475 stain.

[@roxannebudd1978]

I do have a bit of hearing loss in my right ear and a filling of having tinnitus. I have IBS, collagenous colitis, allergies, was having chronic diarrhea and have chronic back issues. Had half my thyroid taken about 30 yrs ago. I take all the suggested meds and supplements for MCAS (except naltrexone)and doing so much better. I still react to foods and have bloat. Thankfully I work with a doctor trying to help me.

[@BubbleBuster]

Healed my mast cell and pots with the carnivore diet and thiamine megadosing

[@DrRuscioDC]

Interesting! Thank you for sharing that. :)

[@ThaiWithSarah]

Thiamine as in Vitamin B1? I am on carnivore now and would love to know more what you have been eating if you don’t mind sharing.

[@BubbleBuster]

@@ThaiWithSarah yes. I used thiamax and benfomax. You have to get to 1000mg-2000mg for about 6 months

[@maureen3770]

This has helped me too. MCAS for 15+ years

[@Ruktiet]

If carnivore diets work, it’s very likely because of the low-fermentable nature of the diet, which points to a microbial cause of the symptoms. Very often this is SIBO.

[@mattymets101]

So if you have an injury or infection (like an ingrown toenail) the symptoms of mast cell are felt more?

[@sharlene4mylife]

Immunoglobulins….more info? Do these come before quercetin and lutolein?

[@joeynarciso94]

Not sure what that question means. Does IVIG treatment come before something? What about immunoglobulins?

[@staceypollack808]

Always think that the body is not your enemy it is always self protective so we can call jt these “names” as a product of symptoms but the real question is what is the body protecting and why . When anyone approaches it from this perspective I’m listening instead of you have MCAS Eds pots and we have no clue what to Do with you. The problem is they don’t yet really understand the brain.

[@Truerealism747]

Heds autism different subconscious mind protection see Dr lenz pain my worst symptom

[@byamukamaoliver966]

Connected to SIBO ??? My God 😮I hv never heard of this and I hv had SIBO for 3 years .Got it after my booster in COVID

[@jefferadus8582]

All vaccins f..kup the gut microbiome why do you think there is so much auto immune diseases and cancers and heart diseases

[@zissler1]

Take befotiamine at 600 mg, then nutritional yeast and raw kefir grain milk.

[@srozaardnet5630]

@@zissler1 Yes. I have heard a lot of promising things about Befotiamine & am looking to start my daughter with POTS on it. I'm also purchased nutritional yeast. I hadn't heard of using raw kefir grain milk.. I will have to look into that. And Dr. Ruscio is so right about the need for salt.

[@donnacostarella4241]

I’m struggling now with bad flare as MTS, median Artuate Ligament Syndrome to the list is challenging. I’ve had Covid 2 times now long covid all dysautonomia worse , I’ve tried what I can. My mcas is worse as well as all. I have a team hard to get some I’ve even had shingles. All systems are off. PFD is horrible getting illiosrimy 25 of April. Dr Adrian diagnosed just all cost a lot to see many drs. Smells , light etc all escalated. I’m gluten free and low histamine but i dont know how to get out of the water. Where else can I get help I also want to check for CSF Due to those symptoms. I’ve had venogram they gave me Fentanyl reacted few days who can help I have many triggers more controlled will help Thank You Thank You Thank You 🙏

[@kellyflanagan4501]

Wow, this was so great! I've been reacting to so many supplements with hives - never had them before. Just another new symptom in this never-ending cycle of who really knows? I really never thought a B complex could cause a histamine response along with the probiotics, but there's nothing else it could've been. I think I'm going to look into the immunoglobulins.

[@DrRuscioDC]

Thank you! I'm glad it gave you a starting point to look into. :)

[@natasha09179]

I get a debilitating histamine response to b vitamins. I know folate is a histamine-liberator and B12 can cause a response if you are allergic to nickel.

[@MrDeterministicchaos]

Hey my mum is alergic to nickle and I have severe mast cell responce

[@beckabuff1]

I have had pots for my whole life. Didn’t know what it was sadly until my late 20s.Some of my first early childhood memories are of me waking up after passing out and going to dr visits or hospital visits for one issue after another I also have Pectus excuvtum or however u spell it. Notes from my parents sent to the elementary schools explaining What to do when I would have an episiode..i have strong suspicion of ehlers and micas as well. The symptoms I have are immense and life long. Over time now some of my siblings are learning they have one variety or another as well. I’d love to talk to the team and be apart of this research. Currently seeing my cardiologist for many years now. I’d love to be in some of these research groups. Where can I sign up?

[@Truerealism747]

Rccx theory so true do you have fybromyalgia to do you have autism to

[@Truerealism747]

Isn't pectus evectum a part of marfan

[@shauser2000]

Where can we find Dr. Leonards pdf that was briefly shown?

[@Tonka9453]

Is it normal that our mast cells activate when in touch with something that is harmful to us- like mold, temperature changes, heat, chemichals in environment or that is not normal at all and showa mast cell activation syndrom?

[@MamaMerton]

I wish I knew a Dr in Alberta, Canada, that I could have my family referred to that specializes in EDS and these symptoms. My children have been written off with fibro, even though my 25 yr old has had debilitating symptoms since he was 12!

[@Truerealism747]

Chronic muscle pain?

[@MamaMerton]

@@Truerealism747 Muscle pain, joint pain, tendinitis, from the neck to his toes! He also has stomach pain and sickness. Top it off with high blood pressure, which the dr says is just from his pain. He is only 25, lives with pain every single day of his life 😢

[@MamaMerton]

Yes

[@Truerealism747]

@@MamaMerton do you have heds fybromyalgia from the autism I believe causes the central sensitisation I have this also have you had migraine

[@plaguedbysociety]

thank you, very good topic even though I found it a year later

[@Supsup7777]

The chemicals in our environment are so bad and they build up over time.

[@lovethelifeyoulive2023]

I agree did you change your cleaning products in your house? I did 17 years ago and it helped tremendously

[@Truerealism747]

Especially for us heds autism the worst

[@Truerealism747]

​@@lovethelifeyoulive2023with pain

[@Truerealism747]

Especially with autism

[@leekflower1]

Can you share the survey he mentions? I dont think its in the show notes that i could see.

[@onewink]

I was curious also so I did some digging and found it elsewhere. sa1s3.patientpop.com/assets/docs/295888.pdf

[@TequilaStandifer8888]

Thank you both sooo much ❤

[@stacyshirrell11]

I need a Dr for myself and my son we live in Southern Illinois Any recommendations

[@yeshuavidaeterna6393]

Alguém pode me explicar oq causa o zumbido nessas síndromes?

[@sheilasmith1109]

One of the first things we can try in Nutritional Therapy is to first sterilize the GI tract, then repopulate the flora. If there's SIBO or parasites, we treat those during the sterilization process. This is a personalized protocol, but it has worked great for all my clients!

[@lauravann3123]

@sheilasmith1109 how do we sterilize the gut?

[@beatz3279]

Would love more info

[@topchic7475]

Check out the Zoe project by Dr Tim Spector in the U.K. It’s the worlds largest ever gut microbiome study. They’ve actually realised depopulation is not really always the answer, it’s about rebalancing which can be done without total removal of of the gut microbiome now and increasing the diversity of your microbes.

[@Truerealism747]

​@@lauravann3123garlic etc

[@Truerealism747]

Threw fasting?

[@tyannefisherloeffler5836]

I have Chairi Malfunction with Syringomyalgia and VEDS and and

[@brittanysturgill7513]

Is the documentary out yet ?

[@Truerealism747]

No mention as the vause for heds autism adhd

[@SamiMusic4you]

My ferritin is super high 330 with MCAS. Is that inflammation?

[@AmyThelibertyofitall]

Ehlers Danlos is an inherited genetic condition! It is not something that is developed after birth. You were born with it, and as your body ages, your symptoms become worse. It concerns me that this doctor is not recognizing that this is a genetic condition that is inherited. One or both of your parents have to have Ehlers Danlos syndrome for you to have Ehlers-Danlos syndrome. Mast cell activation syndrome which is called Mast Cell, and not MCAS, does not cause Ehlers Danlos syndrome however, it can cause your symptoms from Ehlers-Danlos syndrome to be worse!

[@KryptonixX]

Who decided it was a condition you are born with? Some scientist or a Md? Lol

[@ReneèHorne-v5l]

To the reply below your well documented correction: EDS has been found on genetic testing. A deep dive into an Exome Genetic test specifies all but 1 of the 13 EDS types which is type 3. It is my understanding scientists are very close to identifying type 3 on the genetic panel. There is so much scientific evidence for what @amyhosp wrote. It was not just an opinion. I appreciated some of what was said on this video but you can’t take everything someone says without testing the facts.

[@luvfunstuff2]

Who decided it's wrong to refer to it as MCAS? It's just a medical acronym and I don't think there's such a thing as the acronym police. Don't be a PITA.

[@AmyThelibertyofitall]

@@ReneèHorne-v5l very well said. Thank you.

[@AmyThelibertyofitall]

@@luvfunstuff2 there are a lot of things that MCAS stands for is one reason why it’s not called MCAS. In the medical community that I’ve dealt with for 20+ years after being diagnosed with Ehlers Danlos Syndrome, has always called it Mast-Cell. It used to called Mast Cell Activation Disorder but in the past few years the names it was changed to Mast Cell Activation Syndrome. Calling it Mast-Cell is just what they call it in the region of the United States that I live in, but it is much easier when you’re dealing with as many issues as Ehlers Danlos syndrome offers to call MCAS Mast-Cell. Thank you for commenting on hang ups that you have so we could know about you.

[@nadineduncan8540]

I have POTS, but now I am trying to find someone to help me get diagnosed with EDS?

[@zanzah_]

Geneticist

[@stephaniew4168]

How can someone with POTS build up exercise tolerance when their hearts are pounding at 160 just standing still?! Makes no sense.

[@mumac8865]

Use a rebounder

[@joeynarciso94]

Well you need to exercise lying down for starters to get your heart rate down. Also sounds like you could benefit from a beta blocker if it is consistently that high. I'm just in love with my Pilates reformer!! Some parts of the country including Silicon Valley as well as Las Vegas where I've lived they about have one available on every corner, i.e., either in most PT gyms plus also Pilates/exercise studios. I bought mine on QVC!

[@joeynarciso94]

​@@mumac8865that makes little to no sense. First of all that would get your heart rate up more if you're potsy and secondly for anyone with EDS all that repetitive motion and stress to your Achilles is going to be a potential disaster. I only haven't thrown my rebounder away for whoever inherits my reformer when I die.

[@stephaniew4168]

@@joeynarciso94 it's my daughter who is sick :( It started when she was 6 yrs old. We are doing a big physio programme and he says exercising lying down or doing pilates will not translate into walking. We shall see but we are working through his programme at the moment. I do have a pilates reformer though and she does love it.

[@napez4126]

Can BPPV be apart of POTS ?

[@joeynarciso94]

I would think just about anyone could have BPPV since it is very common. Why your otoliths bouncing out of your semicircular canals might be related to POTS would be another issue entirely and not sure why they would be related but you never know!

[@leekflower1]

What doses do you work with for LDN. I'm on 5 mg.

[@nicoleheroux5749]

Restless legs uncontrollable! All my blood tests with anemia b12 potassium and getting lower . Constipation IBS

[@mags5641]

I have Eds hypermobility and I have just been diagnosed with a twisted colon. I suffer from passing out but no doctor takes be seriously. I also had an ablation for an irregular heart. All treated as a separate problem. No doctor here in the UK listen to me.

[@Truther_Nurse]

I'm a nurse and have all of these. It's exhausting.

[@rbarlow72]

I was first dx with fibromyalgia 2014, 2019 severe, small fiber Polyneuropathy, POTS 2023 by tilt test has neuropathy symptoms tried hard not to pass out practically hyperventilating and sweating profusely they said my pressure went up 70 whatever that means, I feel a poor quality of life, I now have many food and environmental allergies as of 2022, I have seronegative lupus and rheumatoid arthritis symptoms, I use to jump and land in the front splits, ice skated, did tumbling and more…I was very flexible but not quite like those who bend their bodies like a pretzel, but I grew fast when I was younger. I took ballet and can point my feet very hyperwell so I’m interested in asking my doctor or finding a doctor who will do these tests. My Pots is horrible. I’m tired of this life I need help and I need change even if it’s just to feel better than I am. I get sores and they take forever to heal, my face turns red like that photo you showed, I take nurtec for migraines. I’m on 22 medications from adult asthma to all of this. Thank you for sharing this video. I believe nothing happens by chance.

[@amel2784]

I tried CBD oil one time and I did not like how I felt. I felt very weird in a very bad way. I can't explain weird it's just that everything was off and I felt sick and I didn't like how I felt at all.

[@emelitastenger6983]

Yup I cant handle SSRI and this us ne in so many ways. Trying to find a Doctors who don't treat ny symptons separately

[@StudioMod]

6:33 my whole life in a few sentences.

[@dianeculverhouse6979]

Does Marfin syndrome have the same symptoms .

[@nancys2839]

It seems EDS & MARFAN are connected

[@joeynarciso94]

There's always google

[@shirleypitts6927]

Along with sufferings from all of the above I accumulate uric acid fast in my joints depends on what i eat. I learned to naturally remove most of it. The pain was like a pin or knife sticking me in my joints whenever I move or walk . Lifestyle change on your part can help along with a Doc that know about these genetic conditions.

[@stephaniew4168]

Vibration - seriously my daughter seems MUCH worse after long car trips.....

[@julierogers4473]

I've been trying to tell doctor since 2013. Label the nutcase. Can't find anything wrong with you so therefore you're making it up. Been screamed out in my face. Riding in a car is murder for me. Almost 12 years and two back surgery that I didn't need to begin with. It was the eds it was causing everything from the beginning. That's what caused my rupture disc, herniated disc. And now I have no collagen holding me together. Just my muscles and tendons. PM Put me on diazepam in September. It turned on me very quickly and started to eat my body away. Made all my symptoms so much worse. Just got my diagnosis on April the 10th I'm afraid it's too late to save me now. I'm in diazepam withdrawal thanks to my doctor cutting in a half in January. Not recognizing that something was wrong. And I had no idea what I was even taking. Cut my dose in half and added baclofen which I couldn't already take. I done told him. I've already had that four times and I can't take it. Well end up in the ER with my gut shot completely down within 2 weeks. In full-blown withdrawal and I didn't even know what was going on with me. 🥺🤬

[@enolacarter4945]

Are you also include Systemic Candida Abilicans. ( 50 years of this. Will you first treat this with long term Diflucan?

[@Ruktiet]

Probiotics, low-sugar, undecylenic acid, fluconazole/nystatin, avoidance of antibiotics. Get stool and duodenal aspirate with culture for assessment if it really is there and not imagined.