Peter Vadas, MD, Immunology | Advances In Our Understanding Of Mast Cell Activation Syndrome
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- Опубліковано 2 жов 2024
- Presented at the Pain: Shedding Light on Inequities of Health - Ehlers Danlos Syndromes and related disorders, as well as Spontaneous Intracranial Hypotension Caused by a Spinal CSF Leak Conference on Saturday, November 7, 2020.
Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.
Great lecture Dr Vadas. You diagnosed me with HATS a few years ago.
I have been diagnosed with IBS, ulcerative colitis at 19 years, chronic GERD at about 12 or 13 years, kidney issues (in my 70s), pancreatitis (in my 60s with a congenital extra duct in my pancreas, gall bladder disease in my 50s, many allergies (starting at about 18 or 19 years, migraines starting at 19 years, asthma when I was in my 40s, osteoarthritis in my 20s, shaking hands in my 50s, rosacea in my 40s, idiopathic numbness in my legs in my 60s, and possible Sjogrens disease in my 70s. I was wondering if any of the above issues could be caused by a problem with Mast cells or Tryptase production, besides my many environmental plus insect allergies, especially as my allergy issues seem to get more numerous as I age. I also have sinus problems. I am now 76 and since I've had the COVID virus back in November, I've had problems with chronic fatigue.
Try quercetin. It is an incredible mast cell inhibitor. My migraines went away, along with many allergic symptoms. Also, use red light/IR pads for chronic fatigue. You need 660 and 840nm both. They're less than 100 bucks.
Incredible doctor, he gave me my quality of life back ♥️ can't say thank you enough 🙏
Yes, me too. He has given me a quality of life that I thought i could never have again. Out of the ashes comes new life!
Yes, me too. He has given me a quality of life that I thought i could never have again. Out of the ashes comes new life!
What actions did you take based on his information.
Hugely useful thank you!! Appreciate you providing this information. After suffering with most of these symptoms since my teens, it took stumbling upon a TikTok video of a young woman who developed Crones disease from having MCAS. I have been investigating ever since and it all makes sense finally. Next step is to get tests done.
Miller Richard Jones Cynthia Allen Susan
Can menses be a trigger for MCAS? I have "catamenial" anaphylaxis. Looking into things I went down the MCAS rabbit hole due to a seemingly flare up that went outside my menses time. I'm thinking I may have this. It sounds very similar to my situation.
I read that MCAS is related to both PMDD and also Endo so it may be related.
It could be anything that starts it... genetics, pesticides, chemicals, stress, mould, illness such as glandular fever.
Thank you. My resting Tryphase level is 21. I have had a CT scan showing an enlarged spleen. My biggest day to day issue is multiple chemical sensitivity. Chemical perfumes and fragrances. If perfume touches my skin I have anaphylaxis. My question is there mast cell medication which can result in being able to be amongst people with perfumes? Kind Regards
I have mcas. I used to have this issue. Now I can wear perfume. I am on a partial blockade-anti histamines, montelukast, metformin. I can say that drinking Two liters of water a day can help with symptoms. Also, choosing a natural fragrance without phalates or fillers. Medicine has been a life changer.
I used to be triggered by perfumes. Over the years it diminished and changed. Now, I can wear it. I have scented candles etc. I have no formal diagnosis because my disease was activated to the extreme by long Covid and by extreme mental and physical stress from a major relocation. I will not return to see ANY doctor. I did have a functional medicine doc online who prescribed Ivermectin for me. It helps with MCAS. as long as I take it everyday, I’m on minimal antihistamines. It’s the best.
@@lauriekline178 how much does metformin help? Irritates my gut so I bailed out after a couple days but that was before I knew it helped MCAS.
@@MichaelMerritt I have pcos and diabetes with mcas. Now I am fighting Trigeminal Neuralgia, so I am taking gabapentin with metformin. These drugs deplete vitamin d and b12, so early morning supplementation is warranted. I split my 1000 mg into 500mg and eat smaller meals to go easy on my guts, and eat more fiber.
Gastrocrom and Ketotifen has helped me a lot with gut and skin reactions. Pepcid (H2 blocker) and aspirin also helps with my reactions to chemicals. I have pretty significant reactions to chemicals, fragrance, perfumes - Gastrocrom and Ketitofen always knock it back down and keep me out of anaphylaxis.
My adult son has small red spots/blotches on his skin not raised blotches such as hives around his knees, ankles and thighs, he has no itching and doesn’t appear to have any other symptoms in fact if you couldn’t see his skin you wouldn’t know there was anything wrong but he has been told he has mastocytosis…is there any other reason for his symptoms…
My husband is thought to have ism indolent mastosytosis. He gets flushing red face. Neck . ears. Upper thighs. Bmb shows no kit but has spindle cells. Resting Trypatase 50
He feels very hot when a attack. His 1 genetic variant is in Asxl1. Anyone have that ??? He is 62
Can anything mimic Mastocytosis with spindle cells and high Trypatase??? On a bone marrow biopsy???
Very help Thank you very much.
So are mast cells only there to make us sick?
nope unfortunately theyre involved intimately in normal immune response to fighting off things