The Link Between MCAS, POTS, and EDS with Dr. Leonard Weinstock
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- čas přidán 2. 06. 2024
- Mast cell activation (MCAS), Ehlers-Danlos syndrome (EDS), and postural orthostatic tachycardia syndrome (POTS) are three often debilitating conditions on their own, but it seems they're likely connected to one another.
Join me and Dr. Weinstock as he explains the symptoms of these conditions, how they're linked, and what the future looks like for treatment. Even if you're only dealing with MCAS or POTS, this episode is worth a listen.
Featured Studies
www.ncbi.nlm.nih.gov/pmc/arti...
pubmed.ncbi.nlm.nih.gov/26976...
pubmed.ncbi.nlm.nih.gov/34618...
pubmed.ncbi.nlm.nih.gov/32824...
pubmed.ncbi.nlm.nih.gov/30022...
pubmed.ncbi.nlm.nih.gov/36337...
pubmed.ncbi.nlm.nih.gov/25640...
pubmed.ncbi.nlm.nih.gov/34496...
pubmed.ncbi.nlm.nih.gov/35636...
pubmed.ncbi.nlm.nih.gov/31421...
pubmed.ncbi.nlm.nih.gov/34441...
pubmed.ncbi.nlm.nih.gov/27741...
pubmed.ncbi.nlm.nih.gov/33629...
pubmed.ncbi.nlm.nih.gov/30118....
pubmed.ncbi.nlm.nih.gov/35663...
pubmed.ncbi.nlm.nih.gov/27436...
pubmed.ncbi.nlm.nih.gov/23666...
pubmed.ncbi.nlm.nih.gov/29183...
www.ncbi.nlm.nih.gov/pmc/arti...
Related Resources
What is POTS: drruscio.com/pots/
Choosing an MCAS diet: drruscio.com/mcas-diet/
To contribute to the MCAS documentary: ldnresearchtrust.org/document...
More about LDN: ldnresearchtrust.org/what-is-...
Courses, free guides, and more: drruscio.com/resources?...
Timestamps
00:00 Intro
01:06 What is the “triad”?
02:58 MCAS, POTS, & EDS defined
14:33 What are effective therapeutics for healing?
17:20 Approach to MCAS: Step 1
18:14 The importance of mental health
27:32 How these immune symptoms connect to gut health
33:18 Where Dr. Weinstock starts with stomach distension
36:32 Immunoglobulins
38:50 Sodium butyrate
39:42 The low FODMAP diet for dysbiosis
42:30 Effective therapies for POTS & EDS
47:39 Low-dose naltrexone
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DISCLAIMER: The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment or discontinuing an existing treatment.
Music featured in this video: "Modern Technology" by Andrew G, audiojungle.net/user/andrew_g
*Full transcript available on CZcams by clicking the “Show transcript” button on the bottom right of the video. - Věda a technologie
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.
EHS, and MCS is connected with MCAS as well.
Ketamine helps me immensely. It also takes away pain and hives. I microdose it.
What about weight lifting for POTS
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🎉❤
Please don't leave out Hypermobility Spectrum Disorder....it is very similar to EDS...a connective tissue disorder.
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 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.
Sending you love and light
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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
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.
Where is Dr Weinstock located?
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 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.
I have eds fybromyalgia autism ADHD muscle pain is now worst symptom.upperbody do you have this
It's autism
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
@@tomsale5142 Pretty much, yes. I take Boswellia for pain (Cox-2 inhibitor), and use castor oil and boswellia topically on joints.
@@donnacostarella4241do you have àspergers with us if so that's why vaccines are a no go not required
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!
@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".
I have the same with asperger's how is your cholesterol how do we no what's causing what have you got CCI to
My neurologist says my pain upper body is migraine no headache
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.
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!
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
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
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
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
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.
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.
Vitamin B1 can also be very helpful for POTS.
And B1 can help SIBO as well!
@@Joan11ifywhat is SIBO?
@@donnazukadley7300 Small intestinal bacterial overgrowth.
@@donnazukadley7300 Small intestinal bacterial overgrowth.
@@donnazukadley7300 SIBO is small intestinal bacterial overgrowth.
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.
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.
Me my sister and paternal grandmother all were born with this
@@KA-pr1xtwhat were your first symptoms OCD ibs?
yes I agree - my kids very young have been diagnosed with EDS
Dr. Ruscio, Thank you so much.
You saved hundreds of hours required to know/ research this valuable info.
❤❤❤
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.
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! I was officially diagnosed hEDS less than a year ago. Recently diagnosed with POTS, MCAS... not fun at all. This information is greatly appreciate.
Do you have fybromyalgia symptoms ti
Thank you so much, this information will help me to gain my health back
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 🥺😞
I would love to know the link between these three (MCAS, POTS, EDS) and Autism(ASD)/ADHD.
Heavy metal is the most common and likely link between each of those five
Heavy metals like mercury and aluminum in jabs? @@montyham3018
Trauma.
Gut/brain axis
Rccx gene theory I have them all we don't have the detox pathways also for this dirty world
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!
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?
@@revelation1215you 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
You absolutely need to check for hidden mold in your house. Start with an ermi.
@@bernadettec2681 what is a ermi
Recently on a 2 1/2 hr flight. Felt the vibration in my legs for 24 hrs
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 ??
Informative thank you
Any research on mushrooms helping?
They have helped pain in my body.
Where is a link to the MCAS checklist? Thanks
It took me a while but I found it by searching "mast cell mediator release syndrome questionnaire"
Been on LDN 3mg for a month Praying 🙏🙏🙏🙏
How are you doing? Will be starting soon.
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.
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.
Can you share the survey he mentions? I dont think its in the show notes that i could see.
I was curious also so I did some digging and found it elsewhere. sa1s3.patientpop.com/assets/docs/295888.pdf
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
How about peptides like GHK-CU for EDS to rebuild collagen and fascia? LDN did not help me.
The chemicals in our environment are so bad and they build up over time.
I agree did you change your cleaning products in your house? I did 17 years ago and it helped tremendously
Especially for us heds autism the worst
what is the website for Dr. Leonard Weinstock for his resources
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?
So is there anything in there being a possible shortage of the enzyme that removes excess histamine?
DAO Tablet supplements of pea and lentil
will help to stop too much histamine
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
Have any of the patients taken Fluoroquinolone anti biotics because, that damages t cells and bone marrow and many FQAD Floxed patients have MCAS
@@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
Thank you ❤
What doses do you work with for LDN. I'm on 5 mg.
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 🙏
So if you have an injury or infection (like an ingrown toenail) the symptoms of mast cell are felt more?
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.
It is for me but I again have symptoms outside of GI rx I have anaphylaxis
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!
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.
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.
Go carnivore diet. Sounds like u have mold & SIBO
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
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.
6:33 my whole life in a few sentences.
Healed my mast cell and pots with the carnivore diet and thiamine megadosing
Interesting! Thank you for sharing that. :)
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.
@@ThaiWithSarah yes. I used thiamax and benfomax. You have to get to 1000mg-2000mg for about 6 months
This has helped me too. MCAS for 15+ years
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.
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.
Thank you! I'm glad it gave you a starting point to look into. :)
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.
Hey my mum is alergic to nickle and I have severe mast cell responce
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?
Meds n fluids
I didn’t know i had hEds/Hsd. I was severely injured by chiropractic neck manipulations, which led to severe craniocervical instability
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.
Are you also include Systemic Candida Abilicans. ( 50 years of this. Will you first treat this with long term Diflucan?
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.
Immunoglobulins….more info? Do these come before quercetin and lutolein?
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.
Does she need digestive enzyme supplementation?
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
All vaccins f..kup the gut microbiome why do you think there is so much auto immune diseases and cancers and heart diseases
Take befotiamine at 600 mg, then nutritional yeast and raw kefir grain milk.
@@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.
I have POTS, but now I am trying to find someone to help me get diagnosed with EDS?
Geneticist
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!
Chronic muscle pain?
@@tomsale5142
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 😢
Yes
@@user-rs7ve3ky3u do you have heds fybromyalgia from the autism I believe causes the central sensitisation I have this also have you had migraine
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.
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.
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.
That is interesting about the bacteria. Do you have to get the source from yogurt?
@@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.
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.
Can BPPV be apart of POTS ?
Was expecting to hear some discussion on vasodilators and their effect on blood volume. I was taking an omega fish oil supplement thinking it would help me and it made my hypotension symptoms worse.
Does anti- 1,2 H help u with blood pooling ? Iam on desloradtine & ketoifen its help a little
@@user-lw8yj5nt3clow blood or high
Does Marfin syndrome have the same symptoms .
Is it linked with mps3b
How can someone with POTS build up exercise tolerance when their hearts are pounding at 160 just standing still?! Makes no sense.
Use a rebounder
I have Chairi Malfunction with Syringomyalgia and VEDS and and
I was wondering if my shortness of breath during anything more than low intensity exercise was due to low ferritin but im wondering if its related to POTS...
😊 yes look at the whole person..my daughter has all these and more
HELP me! I'm going to die because diazepine has put my EDS. Pots, gut issues heart issues. Andover drive along with the fact that I'm now in withdrawal because of my doctor. Just got diagnosed with EDS and adhesive Acrondidis April 10, 24
When u have Lyme/co-infections U can barely function a shower with my chair is A CHORE if u can take one!!!!!
And many more but I believe I also have MCAS.
Ive heard supplemental D can do more harm than good and one should make effort to get real sun or use a lamp
Actually the ability to get D from sun is unreliable. People can practically live in the sun and still be deficient while people who don’t can have normal levels. Yes you don’t want your D to be too high but as long as you keep your levels within normal levels it’s fine
There is also a connection to adhd and autism
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!
@sheilasmith1109 how do we sterilize the gut?
Would love more info
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.
@@lauravann3123garlic etc
All also liked to lipedema
LDN saved my life. I could then take all the supplements I needed to clear mold and heal my gut. Without it I reacted to everything. Even the tiny supplements.
That's awesome. Thank you for sharing your experience with LDN. Dr. Weinstock's sung praises for LDN for a while now :) It's great to hear more about it.
Almost killed me
@@Johanna-qf1yx wow, can you explain more?
Hey, could you elaborate on what you had and how you are now please? Thanks in advance
@@Ruktietldn helps fatigue IBS but not muscle pain for me and it take few weeks side effects
Vibration - seriously my daughter seems MUCH worse after long car trips.....
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. 🥺🤬
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!
Who decided it was a condition you are born with? Some scientist or a Md? Lol
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.
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.
@@user-ej8yp1oo3d very well said. Thank you.
@@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.
What is the guys treatmemt plan for mcas. All im on (in uk) is 4-6 antihistamines a day. Miss a dose and wack!
He showed how you can go on his website and they showed the page here. Go look at how it can be treated. I’m on all these things except naltrexone.
Look up Dr Tina Peers in UK. She has a mast cell clinic. She was my first go to.
The problem is , u didn’t list a way to heal it so I guess I’ll have sibo all my life. I can’t excercise as I pass out . Idk how anyone with pots can.
I have a ton of other content about SIBO that I suggest you check out! I'll link some here to get you started:
drruscio.com/sibo-probiotics/
drruscio.com/sibo-diet
Hope that helps!
@@DrRuscioDC ty!!
I understand the passing out that is why I had to create my own workout program.
LDN made me alot worse. Seemed to setoff alot of issues that maybe inflammation was keeping in check . Also its odd as ny bloods show no inflammation but i have Pots/EDS/McAS, fibromyalgia and functional gut disorder. Also been diagnosed with conpression disorders Nutcracker syndrome, TOS and suspected Mals. Terrified of surgery for the TOs. Also i cant exercise or stretch without severe autonomic dysfunction . I was a gymnast when younger and state competitor for many sports but after lifelong stress and trauma and then vaccine for travel the hep b vaccine i went downhill in early 20s and severe Autonomic dysfunction since. My legs pool and go purple and i cannot regulate temp. Hot weather makes me black out and cold weather my body goes into spasms and locks up. I think given that limbic retraining, DNRS and all other therapies failed is due to the compressions in plexus area that its aggravating the nerves around the parasympathatic nerve bundle. My body is in constant firing of panic that nothing tones it down. Studied psychology and do all the work and meditation Dnrs retraining etc but nothing helped. Hence i believe its the irritation compression of this nerve bundle that is setting this cascade off constantly. I also cannot gain weight so weigh 48kg and yet im 41yrs olf and 176cm tall so i look like i have an eating disorder. Never been able to gain weight and been underweight my entirr life.
There’s no healing pots but pts can help you with a regimen chop protocol
Cerabellum
Jeanette Queen Evolve Well
Mold mycotoxins
Far too many 3 letter abbreviations,and where are the research papers to support all their many therapeutic suggestions? dr Martyn Phipps.
PubMed & NIH has many studies posted online. It's a bit of a rabbit hole. Problem is - most gastro & allergy docs have never heard of MCAS (or LDN) - let alone treat it. Also, anecdotal stories from other patients is one of the primary means of managing our symptoms...
MOLD MYCOTOXINS
Really wish you didn't interupt him so much. You cut right into his turn mid-sentence.
MOLD MYCOTOXINS
Or candida are you better