Dr. Peter Vadas - CME Presentation: Mast Cells Gone Wild - Mast Cell Activation Disorders
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- Опубликовано: 16 июл 2024
- The ILC 6th Annual EDS & Chronic Pain Conference The ILC Foundation Support for parents of children, youth and individuals with EDS and Chronic Pain. www.theilcfoundation.org
An update in links between coronavirus spike proteins, MCAS and the long covid pandemic is needed.
Thank you so much for helping me understand what is happening in my own body. Most Doctors have not even heard about it and it can be incredibly frustrating. This helps a lot.
This is the most thorough lecture on Mastocytosis and MCAS that I I have come across. Thank you so much
This presentation was very informative and kudos to the Doctor for presenting this very complex material in an easy to understand way.
Appreciate video content! Forgive me for chiming in, I would appreciate your initial thoughts. Have you tried - Pefincoln Illustrious Precedence (probably on Google)? It is a great one of a kind guide for erasing your hives once and for all minus the hard work. Ive heard some unbelievable things about it and my work colleague at last got amazing success with it.
I wish this video was 6 hours longer than it is. I’m taking this to my doctor
Thank you very much for this video.
Ps you're doing an amazing job investigating and treating mast cell disorders. Kudos for that!
Thank you Prunk Doo for your kind feedback. Like you, we are so inspired to know that Dr. Vadas is investigating and treating mast cell disorders and its related conditions and are so pleased that he has presented at our conferences to help provide this important education.
Sandy Smeenk
I feel so seen right now❤❤❤
Maybe it’s because I spent so much time in schools teaching, but when he said “hands up if you can’t hear” my arm went up 😂 I didn’t think to just turn the volume up. Since it was down because of the piercing noise.
My arm wanted to go up quickly, but those of us with EDS know by bedtime our bodies have done for the day, including arms!
Thank you so much for this talk and information!
Thank you the comprehensive presentation
Very, very good presentation! Very informative and helpful. Thank you. 👍🏼
Excellent presentation.
Thank you, doctor!!
Thank you!
I have allergic asthma and allergic rhinitis when you have this you suffer
Really succinct video on a very complex topic. Great job!
Thank you Lisa for your kind feedback.
Sandy Smeenk
Great video, thanks for sharing 👍🏻
Very informative! Thank you
Good to see the NASL sound guy is still getting work.
Your presentation was fabulous! I’ve been diagnosed with EDS, MCAS, low immunoglobulins and am so sick all the time (8 out of 10 months ). Saddest part my “MCAS doc is supposedly an expert” 😢
I need a knowledgeable doc in the USA who takes insurance, not a functional provider, too expensive. Any suggestions are appreciated.
Thank you for this indepth explanation of MCAS.
Do you any doctors knowledgeable in EDS in Atlantic Canada (better if New Brunswick)?
I finally got my EDS diagnosis. I seem to have a lot of weird allergies that I'm thinking might actually be MCAS, not allergies. Not sure. Need a doctor who knows enough about it to be able to tell for certain.
I have been absolutely miserable for so many years, because of everything going on with my body and being gaslit at hospitals for years being told that it's all in my head. Now that I have a diagnosis, it's such a relief, because at least my pain can finally be validated.
Now, I would REALLY like to have treatment options that could help me regain some quality of life, but my doctor knows no EDS specialists who might be able to help.
Very interesting.
This is incredible! great presentation! Is there some way to print this powerpoint without having to screenshot these frames?
I was diagnosed after a bone marrow biopsy a few years ago. I have been on Rydapt therapy for nearly 2 years now.
You need radiation for Mast cell activation syndrome?.. I have mast cell activation syndrome and never need radiation, all the doctors gave anti histmine blockers and Montaluckast. What kind do you have if I may ask.
20:00
My immunologist ruled it out because my trypase levels are normal but i’m in an MCAS group and EVERYONE thinks I have it. All this time the only thing that’s given me any kind of relief is Benadryl and DAO enzymes. Most importantly I basically can’t eat anything and I even have to be careful for environmental triggers
Wow. If pots and eds are autoimme, and we could start treating the cause instead of symptoms, maybe I wish get better
What about patients with Lyme?
For chronic autoimmune urticaria that is refractory to omalizumab, we do trial immunomodulators with varying benefit.
AAG is not Autoimmune POTS actually. There is some crossover in symptoms but most dysautonomia have crossover
Any link between MCAs and high cholesterol. My cholesterol is not explainable but it tracks my symptoms- when I am symptomatic my cholesterol is higher- I normally test when unwell
2019 when this was posted and we still cant make a PA system with a microphone that doesn't feedback.
I suspect I have hereditary alpha tryptasemia. I have hEDS, POTS and MCAS and the H1 and H2 blockers I am on help a bit, but they are just keeping symptoms at bay rather than preventing reactions. My tryptase was 11.5, then 13.5, and now is 14.5 as of a couple months ago. Reactions are occurring more and more by the day.
Do dnrs program. It will heal you. Get off all Facebook groups and stop researching things that are false and keep you in fight or flight mode. Your neverous system is sensitive and needs to be recalibrated back to baseline. Google dnrs. Do the program..get your life back. It's not expensive. All these symptoms and reactions usually start after a perfect storm of life events or trauma or surgery.
hey dr peter, i lost my ileocaclevalve. am struggeling with food allergies. do you think i have some of mastcell dissorder? I have permanent sibo due no valve.
I have CML and HS on addition to this. Could I also have EDS? My ligaments have been accumulating calcium since my first leg xrays at 15. At 41, I dislocate my knees and hips multiple times a week. My thumbs multiple times a day.
The one thing that all EDS recordings and presentation have in common is terribly poor audio, even up to international level conferences with major speakers giving vital information. It’s very disappointing.
I’m very close to getting a solid diagnosis after 20+ years of intense searching.... 18:11 my legs look like that (but much worse). I have been searching for a solid diagnosis for 20+ years and have encountered terrible uneducated Drs and Allergists along the way.
My symptoms were mild (hives. Itching digestive ) until my appendix ruptured in 1998 and I developed peritonitis, which nearly killed me. Since then it’s been a laundry list of odd symptoms, which I’m now understanding are part of this complex disease...
2020, I am on a protocol that is definitely helping but I’m still struggling...and I’m reaching out with my story to anyone who will listen/read it in the hopes that I can learn any ways that I might improve my situation. Is there a type of Dr I should seek out for more complete care? Is there a hospital /clinic that I should look into?
Like many with complex health issues I have been on a long tough journey but I still have hope- Thanks in advance for any constructive suggestions- MBZ
Join groups on facebook, mast cell activation disorders forum is one. Search for them in the search bar
meaz thanks- I’ve been a member of a number of them for a couple years now...but am always always learning something new. The quarantine has pushed back my testing, so I’m still in limbo but treating for MCAS with the same protocol which has been helping over the past year or so. Unfortunately, it seems that I’ve got another ear infection (I’m doing warm compress and garlic, which helps a lot!) and my sinuses are going crazy with allergies. Good time to stay inside
Hi from the UK. I have been most helped by Rheumatologists, and Endocrinologists. However, I've had to go to London (capital city) hospitals to avoid pompous Dr's who know nothing. Good luck. 20minutes cardio training one day, 1hr yoga the next, plus juicing have been best for my wellbeing. Plus pain meds :(
👏
:I am not sure why ASA is listed both as trigger to avoid and a treatment? @ 27:35 to 28:11.
anyone here on dupixent for their mcas ? how is it working.
Or JaK or Kit inhibitors
Does Hashimotos Disease have any relationship to MCAS?
Excellent video content! Apologies for chiming in, I would appreciate your thoughts. Have you considered - Ganrayden Peerless Gratification (should be on google have a look)? It is a great one off guide for eradicating your urticaria without the normal expense. Ive heard some awesome things about it and my work colleague got excellent results with it.
This has fascinating info!
Thyroid Hormone, Thyroid Hormone Metabolites and Mast Cells: A Less Explored Issue
29 March 2019
in Cellular Neuroscience
www.frontiersin.org/articles/10.3389/fncel.2019.00079/full
Is granuloma annulare a MCA?
Fire your sound guy. I can't listen to this with all that ringing going on
The feedback was only during the beginning for a few moments. It was corrected. I hope you were able to read Closed Captions with sound sound off...
It was informative for me.
@@lourias no, you know what I'll have to try again...ok thanks. I don't even know why I didn't think of just putting cc.on.
Great video content! Apologies for the intrusion, I am interested in your opinion. Have you ever tried - Pefincoln Illustrious Precedence (google it)? It is a good exclusive guide for erasing your hives once and for all without the hard work. Ive heard some awesome things about it and my old buddy Taylor got great results with it.
Nice video content! Forgive me for butting in, I would love your thoughts. Have you considered - Pefincoln Illustrious Precedence (do a google search)? It is a good one off guide for erasing your hives once and for all minus the headache. Ive heard some amazing things about it and my work colleague after a lifetime of fighting got amazing success with it.
Cheers for the Video clip! Apologies for chiming in, I would appreciate your thoughts. Have you heard the talk about - Pefincoln Illustrious Precedence (google it)? It is a good one of a kind guide for erasing your hives once and for all minus the hard work. Ive heard some great things about it and my best friend Jordan after many years got cool results with it.
I don’t think that MCAS is an autoimmune disorder. POTS can be explained by at least two things: 1. High levels of histamine which dilates blood vessels. 2. EDS can be causing POTS due to blood vessels laxity. It can even be a combination of both and actually many other factors. Prof L. Afrin speculated that EDS can be caused by MCAS as a result of chronic systemic inflammation in the tissues which is also plausible. So POTS and EDS can be a direct result of MCAS which doesn’t contribute to an ‘autoimmune’ argument at all. Some cases of POTS can also have an autoimmune origin as a result of non-autoimmune MCAS. The speaker mentions Azathioprine as a possible treatment. I have been on Azathioprine, 6-Mercaptopurine, Methotrexate, Humira with no effect whatsoever. This, of course, doesn’t mean that if MCAS is an autoimmune condition it must be treated with these meds. There is a lot of evidence that digestive tract permeability causes many autoimmune disorders. In MCAS Mast cells are involved in inflammation in your gut. There is also plenty of evidence that Mast cells contribute to gut permeability which is very logical. So this is not unreasonable to assume that mast cell triggered inflammation in MCAS causes gut permeability and paves the way to all sorts of autoimmune conditions which is why the higher prevalence of such conditions in MCAS patients. I have experienced it all (MCAS, POTS EDS, Crohn’s, Asthma) and after more than a decade am finally getting mine and my family member’s symptoms under control. MCAS is a truly character building and testing condition, but unlikely to be an autoimmune one in my view, but any research is always welcome.
what did you do to get it under control?
@@matt566 Everyone is different. Even my kids react differently to various triggers. It is the hardest condition to get under control. It is a character building condition. Analyze your triggers. Foods have to be clean. Cook from fresh. No additives. Tea and coffee can be a trigger too. I had to go vegetarian as animal protein was causing pains everywhere all the time to the point I couldn't turn in my bed. This is due to the permeability of digestive tract which is caused by constant mast cell triggered inflammation. Proteins get into your blood stream and are treated like pathogens by your immune system. Then your immune system gets confuses and starts attacking not only these pathogens, but also similar cells which are your own causing pain and resulting in autoimmune reaction. I eat
most veg. I don't eat fermented and smoked foods. It's just not worth it. I take Ketotifen 6 tbs per day. Ketotifen is amazing. Takes time to start working, but it reduces the need for traditional antihistamines. The use of traditional antihistamines is associated with dementia. I take Sodium Cromoglicate, Cetirizine, Omeprazole, Famotidine, 2-3 x 75mg Aspirin (careful as might cause anaphylactoid reaction), vitamin C (cherry), vitamin D, iron supplements. The last three are very important. MCAS patients are often mineral/vitamin deficient. The MCAS symptoms might be made worse by deficiencies. Vit D and vit C also known to stabilise MCs. During the summer take cool showers (without giving your body a shock). When I do get inflammation or feel unwell for a while, I self prescribe Prednisolone for 2-3 weeks to get it under control. The dose is vital so best done under the supervision of a doctor. 7.5-10mg is enough for me. I also have Prednisolone with me always to prevent a reaction if I am going to be stressed for example. Having said that I use it rarely. I reacted to Montelukast, so don't take that. Loratadine can also help with asthma. I also take Quercetin and Rutin. Flavonoids have mast cell stabilising properties. I went from bed-bound to very close to normal. I have been told that (then) my 9yo was going to be on immunosuppresants for the rest of his life due to Crohn's disease. Three years later - no immunosuppressants, no Crohn's disease only Cromoglicate and antihistamines! He is a healthy boy now despite the obstacles and incompetent overpaid NHS so called specialists especially the terrible uneducated narrow minded gastro dr at Alder Hey who had no understanding whatsoever of how Mast cells cause inflammation which then leads to permeability which in turn leads to (in our case) Crohn's disease. Even with careful explanation he couldn't get it. My son's asthma is also gone! He runs at school like everyone else and used to sit PE out. I train my kids to ALWAYS analyse what could have been the trigger for every headache or an episode of fatigue to learn what they need to be careful using in the future.
Analysing your triggers is THE most important thing you can do. Dr Lawrence Afrin has very comprehensive info on the subject of MCAS. Also such specialists like Molderings and Theoharides. I hope this helps and good luck!
@starfish POTS can be caused by many things including hypermobility. Hypermobility is very common - possibly affecting 30% of population. The symptoms of hypermobility and severity vary a lot. Many people don't know that they have it. Both my kids have hypermobility which was only diagnosed after I insisted for them to be examined for it by rheumo. They also have intermittent POTS. So my point is that if hypermobility causes POTS then it is likely to be common and underdiagnosed and connection to MCAS can be purely coincidental. On the other hand POTS is not necessarily connected to EDS and as MCAS causes systemic inflammation it can likely impact on functions that lead to POTS. Personally when I control my MCAS I have no POTS.
POTS can also be connected to low atmospheric pressure. Drinking salt can help, but only if you stomach is not too sensitive. Antihistamines constrict blood vessels which is why they help with POTS if you are histamine sensitive.
@@l106ov9thank you so much for sharing your journey. It really does help give a possible road map! We all need to stick together to get through it all!
How can I get in touch with you dr. I'm so overwhelmed and Idk what else to do to get better.
Dr. Vadas honestly didn’t help me...very ego driven! He honestly was too arrogant to even properly go through the steps to diagnose me or help me...still having severe allergic reactions etc.
Mya Moran Have u found anywhere to get help?
Paul5614 I went to a dermatologist and going through better care now
Mya Moran Thats great im glad youre doing better. Have you ever tried taking a Diamine Oxidase supplement before eating? Its helped a lot with my histamine reactions from food.
@@Pablito5614 this is all limbic system impairment. Nervous system needs to be recalibrated. Google dnrs and take the course. You will heal yourself within 6 months to a year. Takes alot of work but it's worth it. Your nervous system is heightened and thinks everything is a threat. Fight and flight mode will not turn off. You can calm it down back to baseline.
I’ve had several sonograms that showed a slightly enlarged spleen for my age. I have H Eds, pots and cervical instability. I’ve had periods of difficulty breathing for years have been surviving off of Benadryl and inhalers. Nobody knows why.
Same
Difficulty breathing in activity or rest?
I have symptoms that I can only characterize as "aquagenic pruritis" Can you plz link that and "mast cell activation"? I think that there is a correlation there but I am having a hard time finding any research about it/
I have the same thing. This almost 7 years and it came onset after several traumatic experiences since 2010. I was reading into polycythemia Vera which is blood disorder categorised as a rare type of cancer but I beg to differ. Our immune system is compromised when trauma is not released. My advise to you is to find a good immunologist that can explain your blood work, check especially if you a high count of red cells and (I just found this out) keep hydrated and I mean not just water, but cellular hydrated. Hope it helps
Trying to find long covid info here.
Do the dnrs program. Your welcome
Check out Dr Been
My son has lc over 3 years some of his group had mast cell issues and her doctor gave her meds and her lc was way better. Another probably had mast cells so he pretty much worked on his gut and got better. My son has POTS and still affected by long covid.
Rituximab for POTS? Has anyone taken this?
I was wondering that too. I thought Rituximab is a chemotherapy used to treat cancer.
Sore throat, sinuses pressure, stomach cramps, fatigue, frequent urination, headaches, etc. I was tested for throat infection, urinary tract infection, flu, chest x-ray, etc nothing, they're all negative. Could it be allergies? Could it be histamine intolerance? Anyone had the same symptoms? Every time I went to the doctor he prescribed me some vitamin D, because I had low levels of vitamin D. Lately I have been taking over the counter vitamin D3, but I have these symptoms for about a few weeks now. I just came across this video doing my own research, hoping desperately to find some answers. I had the same symptoms many times before. They come and go more than e a few times throughout the year.
Just take it day by day.. I've finally started to research histamine and mast cell about a month ago as i have dealt with horrible skin and temperature issues with candida and tachycardia for years.. Its a process.. I think alot of doctors don't have a clue but i think everything relates to the gut and liver.. from the research ive done histamine intolerance to foods is a gut bacterial problem, a sluggish liver and heavy metal toxicity
Turn the treble down!!!!
You are an expert in your field but not in English grammar. It is "different from" or "different to" but NEVER "different than".
No one is perfect. The way you word your comment sounds rude.
@@bornwin-sx9oz Sure no one is perfect but standards of English are falling so fast that its time I think to point it out. This man is a professional and if he makes such fundamental English mistakes, where the heck are we? After all, English is his first language.
@@MrYorickJenkins bruh...
That may be true, why do you think he should be an expert in grammar? Because his career is as an allergist/immunologist, not an English teacher, perhaps we can be magnanimous and appreciate the knowledge he generously shares without critiquing a few misspoken words.
@@PARoth2011 Because the standard of spoken English (and German and probably other langauges) is slipping dramatically. I don't think a highly educated person even thirty years ago would ever have made such a mistake. Now it is common and becoming more common. Less people/he is likely coming/ between you and I-the list goes on.....