My Mystery Symptoms and Mast Cells
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- เผยแพร่เมื่อ 27 พ.ค. 2024
- 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.
Dr. Theoharides’ website www.mastcellmaster.com/
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#health #research #mastcell - บันเทิง
Visit Dr. Theoharides’ website www.mastcellmaster.com/
Find out more about the INIM here.
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@@NSU_INIM😢
Where is the paper I can give my doctor talking about mast cell?
@@mckinneymindycheck out eds society all there
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!
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.
What are your symptoms and do they change over time? I had for example tmj and clicking of my jaw joints, feeling they will lock maybe due to anxiety but since taking ssri meds fir anxiet/depression they have gone, but I now have histamine intolerance etc etc
❤
@@SciSciToys my symptoms are consistent with MCAS and hypermobility. TMJ symptoms I had for decades was relieved by an orthopedic masseuse that does myofascial release. I was having joint pain all along the right side of my body, shoulder, hip, knee…. Once they found stuck fascia on my jaw (right side) and pulled it loose I had such relief. I felt like my head, my jaw became released, the traction feeling on my jaw was gone, it had just seemed “normal” I didn’t know what it felt like not stuck, because I think it had been stuck since I was at least a teenager. I did not specifically ask for this. It was incidentally found after about 8 treatments. I never knew I could feel so much better. Besides my head felt better, the issues on my right were so much better without further treatments.
I have been dealing with these symptoms for almost 3 decades. Medical doctors only Gaslight! :(
Gaslight, I've learned a new word.
@@quake2uwhat does Gaslight mean?
@@SciSciToys Gaslighting is a form of psychological abuse where a person causes someone to question their sanity, memories, or perception of reality. People who experience gaslighting may feel confused, anxious, or unable to trust themselves.
The term “gaslighting” comes from the name of a 1938 play and 1944 film, “Gaslight,” in which a husband manipulates his wife into thinking she has a mental illness.
@@SciSciToys it's when someone keeps telling you something totally opposite of what you know!
Something the media is good at. Doctors do it simply because they don't know what wrong with you nor how to treat you.
I have a friend ask me to watch this video. She suspects this is what's wrong with her also.
I am under the impression that it's parasites.
Parasites provide all of those symptoms.
Yep.
The same problem here in Uk…..difficult disabling symptoms from 30 to 53 yrs, & totally compartmentalised medical response where nobody connected across the different areas.
Also accused of mental problems/stress/depression/hypochondriac…& lost friends, who withdrew & disappeared.
Eventually a diagnosis of inherited connective tissue disorder, mixed & Marfans syndrome.
Csf leaks & excruciating headaches, & dural ectasia by far the worst…& also the least known about & recognised.
Le premier témoignage ma ému, je suis en errance thérapeutique depuis des dizaines d'années, j'ai un MCAS, soulagé d'être en enfer
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!
Do you have fybromyalgia symptoms
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
It’s the same here in Australia. No health professional helped me for 30 years, except one recently. This doctor has given me Cromolyn and it’s definitely helping. Hope you can find a doctor to help you. Sending best wishes
@@Plum2535 hi there, I'm in Australia and pretty sure I have this and also struggling to get help. Who did you see who seems to help?
There is a mast cell center in France called Ceremast, do you know anything about that one ?
@@conandoyle1740 I’ve had several consultations with a dermatologist “specialist” at Ceremast/Hôpital Necker. The extent of the treatment is prescriptions of H1 & H2 which any doctor could do. Never heard of LDN of course. Living with the condition I’ve had to research it compared to the specialist who has a basic idea of the condition. I’m pretty sure I know more about it than her
@@conandoyle1740 no i don't but thanks for letting me know. I'll keep that in mind. Do you know anything about DAO supplements? I'm getting confused with wether to take Querciten. From what I've read so far anti-histamines it is bad to take longterm, wether they are natural or not. And in this book I got its recommended DAO supplement instead. However I asked one of the pharmacies and they didn't seem to know anything about it
This is hell on earth
B12 methylcobalamin corrected all my problems
What daily dosage of B12?
I was taking 5000 when really bad every day
@@potsbottlejars5551did you have fybromyalgia chronic
This is very helpful. Many thanks for sharing this information.
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!
what do you take for mcas?
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.
Praying for you and ALL MCAS patients. God bless and hang in there.
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.
Oh my goodness, have you been checked out for ehlers danlos? This sounds very likely to me
Also to be specific the joint issues like tmj and scoliosis, the hypermobility, the herniation, fatigue/brain fog, sinus issues, anxiety/depression, and mast cell are all veryyy indicative of hypermobile ehlers danlos. Although, there are 13 types EDS and more may apply to you
So jeti didn't help did you have or have fybromyalgia to do you have autism to as heds
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
Do you also have histamine intolerance?
How does one contact Dr Theoharis C. Theoharides or one of his associates. His video is very insightful but my brother is very ill and we live in the Cincinnati area and can’t get any help. He started with neuro and cardiac symptoms and then he started losing the few foods he could eat. For months he’s been down to bok Choy and steak. Then he’s been been having issues with the meat and now he can’t even eat the bok choy. He’s wasting away and can’t work and the meds for mast cell he also reacted to. When he’s having allergic reactions he forces himself to take a Benadryl but then he is back in a horrible cycle. It feels like there is no end and we need someone’s help.
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.
I developed these issues and more after getting vaccines for Covid. Apparently there has been a surge of cases after the rollout of the vaccines and in those who contracted Covid - even in those who didn’t get the vaccine. Autoimmune issues + have surged - vaccines can cause autoimmune issues - and reduced immunity. It appears the many adverse affects of the spike protein - from Covid and the vaccine - may be the cause. Neurological disregulation is also caused by spike proteins per a Stanford neurological scientist. Spike proteins negatively impact every organ in the body and we have no idea how long our bodies will produce them - despite vaccine manufacturers saying they would last only 2 days. Unfortunate on so many levels.
Be careful with the steroids - infections CAN trigger MCAS, and you do not wat to feed an infection on top! Hope you are being wel taken care off...
My trigger is onion (raw, cooked, oil, powder, etc.) Surprisingly onions are in so many prepared foods, cooked foods at restaurants, seasoning on deli meats, broths, soups, sauces, dressings, etc.
Onions have made me feel sick my entire life. And I think they taste good somehow. I can tolerate small amount, but I probably shouldn’t. Onion powder has given migraines since childhood.
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!
I have that pulsitile pulse noise in my ear intermittently. I take famotidine, an h2 blocker for elevated pulse, it works for me. Finding this was the difference between functioning or not.
@@sharibaratono8363 Thank you!
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
Gastrocrom?
@@darilekron4590 yes
how long did you notice a difference.. I'm taking the nasalcrom version
@@cjjames83 idk. It depends . Its subtle. It may not seem like it's working but I can tell with pollen allergies and mosquito bites - they are much less reactive
Nasalcrom is great - can't get it where I am
But it's the oral kind that helps the whole system
Also using salt water eye and nose rinses helps with regular pollen and dust mite allergies
Give it a few months at least to see if it works
I use it for a few months then take a month break
You have to become very aware of how things affect you - like food eliminating for allergies. Each person is different
Good luck ! It's hard work but worth it 💪🏼
@@pluto19leodo you have hypomobility heds autism the cause for it muscle pain my worst symptom daily years
What is the relationship between MCAS and hormones? People with histamine intolerance are better during pregnancy and “brain fog” is reasonably common at menopause.
I was better in pregnancy..
@@shelleynowwilsondoesn't realy work for males though with this lol do you have hypomobility
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.
I've found with medications, sometimes it's not the actual medication but is the binder in a pill, time release agents, or carrier in an injection. For me, cellulose, the capsule itself, metabolize gradually into epinephrine which I'm sensitive to, causing heart racing and anxiety. I have chronic B12 deficiency and learned the hard way that the carrier in the injection gave me dementia symptoms within 15 minutes so bad I had to pull over, I couldn't make a phone call for help because I couldn't operate my phone, couldn't recognize my surroundings, totally scared and so thankful I never got pulled over or questioned by police because they would have been convinced I was intoxicated and arrested me. I stopped getting the injections, can't take synthetic B12.
We have so many processed foods that are mineral and vitamin deficiency. Also, those cheap vitamins that are added back don't assimilate in the body. GMO and pesticides are disregulating the gut biome... etc...
Many doctors seem to think that those of us with chemical sensitivities are on govt disability. Guess what...you need a diagnosis and doctor to sign your paperwork. Plus you cant have more than $2000 in your name (no savings, etc). Most of us have had to quit our jobs but we cant get on disability...no diagnosis...more drs say I dont know what is wrong with you, can't help you. So it's like they don't believe you. Luckily I wasn't working during covid...so did not catch virus. Over active immune cells, I figured I was more suspectible to catching whatever virus was going around. Most of us are using our savings to live on...so eventually many of us may not have anything but $2000 in your bank account. But we still needed a diagnosis...and we can't get anywhere. Lots of suicide in the MCAS fb grps....getting more sick, more deadends.
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.
For the pass 1 year i have been having simtoms all over my body,and yes i have been told its all in my head ,couse am sure most of the doctors i visited didnt know what was the problem and its a easy way out to say its all in my head.
Now recently i found out that my vit D is preaty low,my DAO enzime is low,and did blood work at a hemotologist and some of my white blood cells are high and some are low....so yea i bet all of those resolts are all in my head as well.
What i want to know is,what field of doctors shood have knoladge about mast cells?
Sorry for some bad spelling,english is not my 1st language.
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.❤
Chronic fatigue and Fibromyalgia both respond to B12 injections??
Sounds like me
a caring genius. a God among men
Fantastic podcast...with a plethora of information, examples and advice on MCAS. Thanks for posting it.
My life... 🫤
I've have struggled with the exact same conditions as both of these patients for 15 or more years. Can you recommend a doctor who can treat this condition??? Like them I have been to more than a 100 doctors and am just told its in my head or give me meds that I always react to.
Luteolin, Rutin, Quercetin, cromolin.
Thank you for posting.
Thank you
Wow had no idea this many ppl could relate wow. That was the worse Drs n ppl try say n u mind. Well over 20 years for me and I hate fact this many ppl have had suffer so terribly and ppl act like they nuts wen they are living a physical hell nightmare. Me already having liver disease from surgery Shriners hospital then over exposure led paint but when had battle cancer liver disease n scoliosis n bone disease s already had made all this way way worse. I can relate every symptom on here n Way more than what I'm reading if not for Jesus no way I could endure this I like person on here that is ready to leave earth they say get old so won't have suffer as much my spine Dr say I'd never live past 50 I'm 55 almost n that gave me hope wen Dr say that cuz meant I could get out this horrible body that don't work but I'm still here n will have endure to my end unless get miracle cause I'd never take my life no matter how awful it is but I'm tired so tired ain't been able go n family friends homes ride cars others go stores restraints can't breath erfumes cigarettes smoke cleaners diesels fumes hair spray basically everything really way too much to write but that's heart wrenching that medical feild has failed us made fun of us rolled their eyes i dont ever do drs ever their worthless to me only ever hurt mess me up worse and tryed make visits all that alchol stuff n drs n ect id be literally not just these reactions but even. More. Too much write but I need new wheelchair now bad but can't get one cause I can't get a Dr do a telephone visit there's no way I could even attempt now nor will I I can't n these Drs don't get it at all. I mean I've had way too many visible symptoms even still ppl try say n u head it's pathetic I always want write book on this but jus typing this is messing spine up too bad. But anyone on here needs a listen ear or a prayer or someone to relate n share my number is 85954445886 I normally won't give my number but I will here. God bless you all thku sharing
Have they tried elimination diets i.e. cutting out all grains for a few weeks and then also dairy? Thirdy, high histamine foods?
How you test for this?
You repeated Julia's statement about what is worst for her now
Ads are very annoying when trying to follow complicated medical diseases.
Nicotine and mythyl-folate aka B vitamins really help with energy as well...several times a day.
Nicotine ? As in the addictive chemical in cigarettes! Are you sure it's nicotine? Many take rx compounded drug LDN (low dose naltrexone)....reduces inflammation in body...apparently used for pain reduction as well. Look it up and when you find the LDN trust or foundation....they have tons of info about other diseases it is used for. I think they have links to research articles.
Nicotine?
@@maryr7593nicotine is being used as patches for CFS-ME.
Nicotine helps me w MCAD and POTS
I wonder if the cream would work for my perioral dermatitis I get from my steroid inhaler. I have been diagnosed with MCAS but could possibly have mastocytosis. My immunologist says the testing we have here in Canada is very limited. Ketotifen and Pepcid have helped me but not enough for me to be able to work. Now diagnosed with suspected Ehlers Danlos Syndrome. My GP put me on omeprazole to help my acid reflux. Oddly enough the omeprazole seems to be helping my tachycardia and dysautonomia symptoms along with helping my abdominal pain and swelling.
Famotidine helps dysautonomia for me. I have seen other information stating POTS can be related to esophagus irritation/reflux. This seems true for me, but famotidine is an h2 blocker, where omeprazole I believe is a gastric juice blocker I haven’t tried, ut suspect could also work like for me as well. I have hypermobility, by my adult child has EDS and has had trouble with perioral dermatitis - not using a steroid. But my child just started on a steroid inhaler as well due to “weird asthma”. So will have to remember this, thank you.
Same here I figured it out myself.. drs even a really good specialist in Colorado threw allergy pills at me that I react to! I use DAO to eat a few foods I tolerate! Tramadol helps my brain think and give me energy so that seems like serotonin is very low! I can’t take any supplements or meds if I get the headache/ migraines! Not worked in 2 yrs but this came full blown after x4 covid infections!
Reasin for my ne efs asperger's
My daughter has been diagnosed with urticaria pigmentosa and we don’t know where to begin.
my daUGHTER IS 24 AND HAS BEEN STRUGGLING WITH MCAS FOR OVER 4.5 YEARS AND DOCTORS DONT UNDERSTAND...WHAT DO WE DO?
@@timjones5633 have you been to allergist and hematologist?? It is hard to get real answers
@@timjones563326
Get checked for heds
You need to find a MCAS specialist, like Dr. Afrin, among other, where do you live?@@timjones5633
@@timjones5633 start with a low histamine diet
Is it something toxic in our food? Maybe it is only in certain brands or products. So not everyone gets it who doesnt eat those brands or products
anxiety is what they tell me.
Mold Toxicity