The Role of MCAS in Long Covid | With World Leading Specialist Dr Lawrence Afrin

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2021-02-09に共有
The biological mechanisms of Long Covid are still somewhat of a mystery. But as we dig into the jigsaw looking for the pieces, one of the largest we've found is Mast Cell Activation Syndrome.

In this wide ranging interview with one of the world's leading specialists in the field, Dr Lawrence Afrin, he sheds light on the presentation, pathophysiology and treatment of the condition, as well as its complexity.

A huge thank you to Dr Afrin for his time, knowledge and wisdom.

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The Long Covid Handbook (Oct 2022), by Gez Medinger and Professor Danny Altmann and published by Penguin Books is now available in paperback, ebook and audiobook. A singular resource that brings together everything patients, clinicians and academics have learnt about the condition since early 2020, as well as lessons from sufferers and researchers of ME/CFS and other chronic conditions. It offers world leading expert advice on understanding, managing and treating Long Covid. The Long Covid Handbook is available from the following links:

US: a.co/d/0gvkJCU

UK: amzn.eu/d/9KjurGb
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0:00 Introduction
0:44 What are mast cells?
1:34 What role do mast cells play in the body?
3:12 How do people with MCAS present clinically?
5:45 Why is MCAS so poorly recognised within the medical community?
12:22 How do Long Covid patients present?
13:55 How have you treated Long Covid patients?
16:33 How do you clinically test for MCAS?
20:37 What advice do you give your Long Covid patients in terms of management?
26:43 What are the most common triggers you see?
28:10 Are you familiar with the NAD+ deficiency theory? 


REFERENCES:

MCAS and Long Covid, Afrin et al (2020):
www.sciencedirect.com/science/article/pii/S1201971…

Mast Cells, Wikipedia:
en.wikipedia.org/wiki/Mast_cell

コメント (21)
  • Your interview skills are excellent, as are your skills as a researcher. Kudos to you!
  • @kd2533
    Brilliant interview. Had 70% improvement in long covid. Antihistamine twice daily (the biggest boost came from these, like he says can happen). Low histamine diet. Pacing as needed. Sleeping in an EMF blocking tent (wifi has been implicated in mcas), red light therapy panel 10 mins 3 x week, acupuncture 1 x week, Augmented NAC twice daily, calcium ascorbate 1 x daily for vit c that doesnt irritate tummy or bladder, plus avoiding exercise still as it still causes PEM. Existing EDS and MCAS meant the spike protein (in any form) and I don't get along. Been a rough, broke, long road.
  • I think with long covid, the trigger is movement / activity / exercise. I think we need the anti-histamines and anti-inflammatories to help our immediate symptoms. Then we need to try to switch off our fight-or-flight (adrenaline) response so that we can rest and let the body heal itself. Antihistamines, anti-inflammatories, then rest and time. That’s my plan for recovery. Thanks Gez.
  • @markh1327
    Just like to share some hope, my daughter was diagnosed with MCAS a few years back and caught COVID just before March 2020 lockdown. She has had a really rough time with tachycardia, overwhelming fatigue, skin rashes, secondary infections, etc and lots of rejections from GP/NHS. However she had the AZ vaccine 4 weeks ago and has been making steady improvement in the last couple of weeks, fatigue mostly gone, fewer new spots, thinking clearly and had just started back to work this week.
  • Thank you so much for everything that you do, you have helped me more than my doctor has. How are you feeling these days? :)
  • Most valuable info ! I've identified my food 'triggers' from no snacking in between meals etc. I was so glad to hear of no long-term bad affects from taking anti-histamines. THANKS FOR THIS !
  • Last time I was counting down the days to watch another weekly episode on screen was when watching Sci-fi series in the eighties as a teenager. Now I am hooked in the same way to these interviews. Thanks for this one, even if the message in here did not sound very hopeful to me..
  • "I was about 70 MCAS patients in before I found the first one that bore any degree of similarity to the other ones." This is why the future of medicine must be based in QUALITATIVE symptom documentation, AI bookkeeping of those symptoms, and AI genomics correlating those symptoms. If two people both get "ear discomfort" from COVID, that is an extremely unique symptom, and thus almost certainly underlies a shared genetic mutation. Less unique symptoms can be analyzed as clusters with AI, something that no human doctor would be able to do.
  • I am in the process of being diagnosed with MCAS. I’ve had symptoms for 10 years. It is so difficult to not only treat but also diagnose. Thank you for this interview. I’ve heard so much about DrAfrin and it was great to hear him talk, looking forward to discussing with my dr.
  • Insane. I need to let you know that thanks to your video on low histamine diet helping long covid, you lead me down a video path that went to MCAS issues and this past week just helped me possibly diagnose at least in part, what is contributing to my daughter’s lifelong unconnected symptoms and health issues which are putting her in the position of going on disability. At minimum, histamine intolerance which there are many videos on but more likely worse. I have also realized I am allergic to nightshade and peanuts so far and have also had lifelong issues-too many to go into here but I am a 20 year B-cancer survivor and also found that myself when doc said I was to young to have cancer. So thank you for your perseverance in not giving up trying to find out for yourself what is going on with you and your health - as you are helping anyone who will stop and listen. Thank you thank you thank you.
  • some of us also have DAO deficiency which makes even worst as we cannot process properly histamine from food. This can be tested quite easily and could help identify additional issues around histamine intolerance which might play a role in MCAS too.
  • Brilliant interview so informative. Thanks so much for all the research you have done over the past year its invaluable.
  • My nursing school teacher told me Benadryl was a wonder drug and on one of my support groups people asked what I used and I said Benadryl and Coffee...espresso can be used in a pinch for allergic reactions I learned from a mom who had a child allergic to bee stings very informative and interesting interview
  • I’ve had Mcas for about 8 years. I’m naturally an experimenter, and have tried just about every possible cure. For me triggers are mold, heat, exercise, and some high histamine foods. I take antihistamines daily, don’t drink alcohol, and take liposomal vitamin C. I’ve worked for over a year to improve my gut, and see some results. I take spore and yeast based probiotics and low histamine probiotics daily. The gut is key.
  • @Evajkpg
    Thanks again for trying to spread some knowledge on our symptoms.
  • @jarrgeez
    I used to have it. Couldn't do much or eat what o wanted but now I can. Less supplements helped a lot. Prebiotics made the change for me (psyllium fiber, ground flax seed), probiotics as well. Can't get better unless your stomach is ready for recovery.
  • @IwCk
    Great interview, I very much enjoyed it. I appreciate the interviewer allowing his guest to talk freely and only ask questions when the doc has finished his answers. V
  • Great video thank you and thanks to Dr Afrin who has done so much work in the MCAS area. His book is great. What he is saying is correct there is no magical formula for these complex issues and the people who have them. We are all biologically different.
  • I've also been doing a lot with diet and supplements for deeper gut healing and repair at that level, and I think that's an essential part of the healing for me as well. The progress is slow and incremental, but I'm at about 90% better from the Long COVID. Managing the underlying MCAS will be an ongoing effort. I got COVID in early September and started expressing long COVID in October. Brain fog, headaches, tachycardia, breathlessness, general malaise, are all mostly or completely better. Main lasting symptoms are some fatigue and malaise. Just wanted to share these pieces that have helped me for all out there suffering.
  • Great and fascinating interview. I love seeing new videos about MCAS. It can take many years to get it diagnosed though. Been going to the allergist since 2018 and still don't have it diagnosed. One problem is it doesn't show up on IgE so they then don't know what you have. Maybe this will change things and it'll get easier for doctors to identify. Some of my countless triggers include countless foods, perfume worn by others, scented products like air fresheners or laundry detergent, personal care products, fumes from restaurants - i can react 1000 feet away, ink fumes like on newly printed books, paint fumes, things off-gassing, chemicals, hair spray, any product with a strong chemical odor like glue or particle board or plastics, hand sanitizer, grains especially corn and wheat. You get more sensitive as time goes on. I use all natural products. Eat organic and as clean as possible. Grass fed meat only. Use reverse osmosis. Avoid dryer sheets. Avoid toxins. I don't have the virus but i am hypermobile and probably have EDS. I fit the criteria. Thanks for posting this. So yes I've been living with this for years. Most of the time i feel ok but it can be very hard avoiding all those things and most places people take for granted i don't ever go because i don't want to get sick from reactions. Also many MCAS patients react to the fillers, coatings and non active ingredients in the OTC anti-histamines. Many have problems with corn. Just things to be aware of. Everyone is different. I hope none of you long haulers get a corn problem as its the devil to deal with! Its in almost everything! Hope you feel better soon!