My Mystery Symptoms and Mast Cells

In this documentary, Theoharis C. Theoharides, MS, MPhil, PhD, MD interviews Lisa Kilt and Julia M. Stewart, RN – two individuals who have experienced mysterious symptoms that doctors are unable to diagnose. As they walk us through their struggles and experiences, Dr. Theoharides breaks down the science behind mast cells, mast cell activation syndrome (MCAS), and the possible solutions to dealing with symptoms.

While a mast cell blocker is still unavailable in the market, Dr. Theoharides encourages more clinical research to be made for complex illnesses like MCAS.

Key Points:
00:00 Introduction
01:08 Lisa Kilt recounts her mystery symptoms
06:06 Julia M. Stewart, RN, recounts her mystery symptoms
08:59 The struggles of getting a proper diagnosis
14:22 Emotional and social effects of the mystery condition
18:09 How the mystery symptoms can fall under different diagnoses
19:28 What are mast cells and mast cell diseases?
21:45 How to pinpoint mast cell diseases
26:13 What makes MCAS different from other conditions?
30:34 Possible medication for MCAS
32:23 The importance of shedding light on symptoms
39:50 Natural supplements for MCAS
41:30 Other actionable tips for people with MCAS
45:33 The effects of stress on MCAS patients
50:52 The importance of complex illness research

Dr. Theoharis C. Theoharides joined Nova Southeastern University (NSU) on July 1, 2022 as Professor at the Institute of Neuro-Immune Medicine, and Director of a new Center of Excellence on Neuroinflammation Research at the Clearwater campus. He has been Professor of Pharmacology and Internal Medicine and Director of Molecular Immunopharmacology & Drug Discovery, Tufts School of Medicine (1983-2022) and will remain as Adjunct Professor there.

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#health #research #mastcell

[SciSciToys]

I think I have this mcas, I had tmj, anxiety and depression and been on meds for that for 30yrs now and for gerd/hiatal hernia, for the past few years i javent been able to fuel up as i want to vomit when around diesel or petrol, the same thing happens with any perfume, so walking through a mall in the ladys perfume section was torture, last yr i couldnt take it any longer, i paid for a functional med doc to see what is going on she didnt even mention mcas, i wrote my history of hypermobilty and my worsening allergies to everything, dust, pet dander, histamine, brain fog, post nasal drip, rhinititis, cervical spondylosis, scoliosis, she did blood tests and my esonophils were out of range, and other markers that i cant remember she put me on an AIP diet, but still reacted because of histamines... I later went keto, then carnivore which was a disaster cause of histamine, man, I paid £3600 and she missed it.

[RunningWithSauce]

I'm glad people are talking about MCAS. I am Systemic Mastocytosis (dx via BMB) and am in a clinical trial for a TKI. However, I have since being diagnosed developed TILT (chemical intolerances) and believe MCAS can be present in SM as well. Nightmare fuel for me as I cannot be in public without risking anaphylaxis again, yet I have to travel in a metal tube filled with people wearing way too much fragrances to the clincial trial site for labs.

[sallytellsstories]

Thank you for this very informative video. I had been struggling with MCAS for years. I had to do my own research and convince the immunologist of the possibility of MCAS after almost believing what all previous doctors told me: that it’s all in my head. Grateful that there are some people out there working on raising awareness on MCAS and the mast cell circus!

[gridly]

I have been dealing with these symptoms for almost 3 decades. Medical doctors only Gaslight! :(

[WeepingWidowSueAna]

Thank you for this presentation. I have been dealing with severe MCAS for the last 15 years and it has been the worst experience ever. Thank you for bringing awareness to this nightmare!

[gridly]

IME- we MCAS folk are very sensitive to the additives (fillers/excipients, etc.) in Pharma drugs and supplements. NOW in the US, they are No longer regulated since 45 slashed Regs in '20! This allows unscrupulous manufacturers to use cheaper and highly toxic extraction chemicals which (to save even more $) they don't rinse them out, so they stay in the end product!

[quakeu]

Been dealing with this for 67 years and I've come to the reality that I glad I'm old and don't have to endure this much longer.

[iahampster]

I have for 2 years now suffered with hives in different shapes, different whelps etc. I lost over 50lbs in 4 months. Finally got a biopsy done on an out break of hives. Came back with mast cell. Very painful, now has become sever in places that I’ve not had before.hours of pain, itching, almost mental breakdown times. I’ve noticed in past month after not having hives for over 2 months then boom they came back worse and I’ve noticed it’s triggered by emotions. Steroids didn’t work, 2 antihistamines bid, still suffer more now then last year. Dr.s say labs are good, then labs are abnormal. I feel defeated now, this whatever is I’m dealing with is taking my life away little by little each time. Dr.s think it’s in my head. My memory is getting worse. Too bad you can’t find a Dr. that will listen to they think you want pain meds. I can relate to these 2 ladies.

[victorianalin]

I’m a third generation of MCAS and have numerous health issues/reactions/allergies since birth. I’m 55 and have never had adequate medical attention. I live in France and seem to have a better grasp of my condition than the top specialist in Paris. Zero blood work here, it’s like living in the Middle Ages compared to other countries in terms of treatment

[rosacelabi]

Thank you so much, Dr. Theo and patients. I wish every doctor would watch this video.

[kerrilandry]

Thank you for this informative video.I struggle with many MCAS symptoms. This has pointed me in the right direction to getting more answers and seeking treatment.

[invisiblegypsy]

I have a reaction to cammomile tea. Also to the new histamine blockers. I tollerate to some extent, a naturopathic antihistamine that has formic acid in it. I improved some symptoms when I cut out dairy (and ofcourse sugar) and grains as well as all fermented foods. My vit D is very low and have not been able to raise it even after abundance of sunlight and 7500 units (currently) of D3K2. Trying a liposomal D product to see if that helps. My D level is 70-80...the ideal is 180. (Canadian) I am so much worse after having covid a year ago. I hate going to the ER with my unconrollable symptoms of rapid heart rate or spikes in BP and allergic responses...they now are suspicious that I am either an alcoholic or a drug addict. I have not ever been able to tolerate alcohol...if I did elicit drugs I would probably be dead! Food is poison to me not to mention so many medical drugs. I chose to have a scope without meds to relax me because they make me ill for weeks after. It is really hard to have the will to carry on. I also have pulsatile tinnitus (totally foreign to staff in this little hospital) that is additional stress. Twenty years ago PT came upon me along with sudden hearing loss in the left ear and has not quit...24/7 I hear my hearbeat...like I have a built in stethoscope. I am disappointed with the lack of compassion, the ignorance and intollerance from poorly trained medical personnel. Thank you for this information. I very much identify with Lisa's experience. I am 76. At my recent trip to the ER the Dr. told me I need to get out more and stop focusing on my symptoms. sheesh. If I felt good I would be out running and going to the gym every day, not just a few times a month. Shame on them!

[vvakalee]

Le premier témoignage ma ému, je suis en errance thérapeutique depuis des dizaines d'années, j'ai un MCAS, soulagé d'être en enfer

[potsbottlejars]

B12 methylcobalamin corrected all my problems

[shannonnoseworthy]

I had 70 mast cells per square inch in my skin, CD2, CD30, CD4 and CD8. neutrophil, eosinophil, and, lymphocytes. And they still didn't do further testing. Welcome to Canada 😢😭 Been suffering for years

[annesimpson]

What is the relationship between MCAS and hormones? People with histamine intolerance are better during pregnancy and “brain fog” is reasonably common at menopause.

[kendalgoodson]

I certainly don't think Lisa is crazy when she mentions having symptoms after being around electronic devices. However, I wonder if the issue isn't related to electromagnetism, but rather to the multitude of chemicals that are used to make the devices themselves. The plastics, heavy metals and solvents used in electronics manufacturing are toxic and hazardous.

[plutoleo]

Cromolyn sodium oral solution. By prescription and it really helps but you have to ask for it . Drs often don't think of it first . And cromolyn sodium eye drops .

Cromolyn is specifically for MCAS ( mast cell activation syndrome)

Very few side effects that can be tolerated or even go away

[shereetedrow]

Xolair has given my life back after MCAS…I was diagnosed after colon biopsies

[carculturesweden]

This video is great news, finally some professional dialog about MCAS. Been on citrizinekloride dialy for 10years to control skin itches(redness when touching the skin) and a variety of allergies. Now 1 month without it im having the worst itches in my life on and off. Especially scalp head and feet for some reason, alot of people that have been using Zyrtec have had same problems afterwards but i think it could be MCAS? Many post user's of citrizinekloride are trying to taper off to reduce the effects of the itching but it could still be months or years of itching and other side effects and that's not likely just due to the antihistamine medicine 🤔 anyway keep this up.❤