The Role of MCAS in Long Covid | With World Leading Specialist Dr Lawrence Afrin
ฝัง
- เผยแพร่เมื่อ 18 พ.ค. 2024
- 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...
Mast Cells, Wikipedia:
en.wikipedia.org/wiki/Mast_cell - วิทยาศาสตร์และเทคโนโลยี
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.
Enzymes help too, as we start exercising again. I built up to just 3 simple miles of interval training by August 1st (after having C19 in March 2020). I think enzymes helped me get even that far, but 3.0 miles triggered relapse and I'm still rebuilding. Ivermectin helped more recently, but I don't want to stay on it. When the US weather warms, I will be gradually experimenting again with increasing endurance. What a journey.
Maybe propranolol for blocking adrenaline?
@@barbarawarren9443 at what time into your long haul did you begin IVM? What symptoms did it help most?
@@christiangranqvist2350 or perhaps deep breathing, meditation, journalling, prayer, nature walks, social support?
Have you guys tried taking supplements to help your adrenals fatigue to shut off the fight or flight
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.
That’s great news - and does suggest viral persistence may be a thing for Long Covid! Lots of stories like this anecdotally
I have 5 weeks since I got covid, worse weeks of my life to be fair... was mild to severe I think(I'm 26 yo), I wasn't at the hospital but what I felt was awful. Today I'm felling a bit better, like 73%, I kinda feel like gaining 1% a day and sometimes even going back like 5%. The biggest problem It's insomnia for me, I just can't sleep without imovane(a sleeping drug), I would stay hours and hours with eyes closed without feeling the need of sleep. I don't think is from stress because I usually meditate and clear my mind, but might be without knowing it. Am I the only one having this problem or I'm just getting crazy?
Great news!
@@thepirate4095 you are not alone in having problems sleeping. From tonight's Stereo talk it sounds like mast cells releasing histamine which in turn keep you awake. So I would try antihistamines and reduce histamine in diet?
@@markh1327 After I take imovane I fall asleep without knowing when, It is very strange, before covid I had a step before sleeping when I was feeling sleepy, now is just taking the pill, worrying half an hour if I sleep, and bang, wake up after 4-5 hours and go to sleep again. If I get up or do something I can't fall asleep again.
Your interview skills are excellent, as are your skills as a researcher. Kudos to you!
Thanks Erika!
Especially being a long hauler. I couldn’t imagine doing what you’re doing right now. I can’t even watch this video in one sitting. So more kudos.
Robert Reed I generally need to go and lie down 3 times a day but I can squeeze bursts of work in between them. It’s got better over the last month or two
He IS a gifted interviewer. He could teach bedside manners to doctors.
Yeah - we're lucky to have this guys help. Hes has very good contacts/associates, very good knolledge on the subject and the ability to create well put together content for us. Fantastic really.
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.
This is me right now.. I’ve ordered DOA Supplements and hoping they help!
Thanks again for trying to spread some knowledge on our symptoms.
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..
We may not have all the answers straight away - but persistence will pay off! Thanks for your support :)
Thank you so much for everything that you do, you have helped me more than my doctor has. How are you feeling these days? :)
Thanks Maria - I’m getting by. Spinning too many plates though!
@@RUNDMC1 Hope we all feel 100% soon :) Can I ask if you felt the same way when you had dengue fever? ( you said you once had it if I remember correctly)
Maria Halvorsen It was EBV I had, and no - it was nowhere near this bad.
@@RUNDMC1 Well, I feel you and wishing you all the best. Once again thank you for all that you do. Hope you have a good day :)
"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 only had to talk to about 5 other MCAS patients before I saw like 78% similarity, so if someone had to get to 70 to find similarity then it sounds like they weren't actually listening to their patients
@@detectivewiggles he includes a lot of people in his book that I really am confused about. I think he spreads the umbrella too wide. Not that he isn't a lifesaver,, my dr knew exactly what I had because coincidentally he talks to Afrin.and had other patients before me... But it was a fluke.
I got the ear problem!!
Quercetin EMIQ (a highly bioavailable form of quercetin) is great anti-histamine, anti-inflammatory.
Just went through this. My doctor is clueless. I'm suffering
You sir have an incredible talent in choosing which questions to ask! Thank you!
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 !
Brilliant interview so informative. Thanks so much for all the research you have done over the past year its invaluable.
Incredible work, thank-you.
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.
THANK YOU AGAIN!
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.
Incredible - looking forward to your follow up -
Thank you so much. I always find your videos so helpful. Coming from South Africa we have very few support systems. Our doctors are quite overwhelmed at the moment.
Excellent interview, thank you Gez!
Thanks!
Excellent video yet again Jez. Your videos have been crucial for myself and countless offers on the Facebook group. Also, fair play responding to all the comments to this video. Thanks sir.
I do my best!
Thank you! Wonderful guest Dr. and very good interview. I am going out on a limb, but intuition to yourself as a guide to healing along with meditation will heal you.
Great questions! Thank you to you both for this video. Very helpful.
Thank you so very much for your prompt reply, and also for your excellent and very informative videos! Our doctors here freely admit they know nothing about Long Covid and you have helped me so much more than any other doctors have! Hope you’re feeling well too! ❤️
Thank you Maureen!
Thank you so much for these videos, Gez. I'm incredibly grateful. I'm so glad you got Dr. Afrin in for an interview. His book about MCAS is an incredible read for those of us with this condition who are trying to understand it better. It's amazing to me how complex it is. I am really curious if there is a worldwide database of doctors who have education about MCAS, as I'd love to have that resource to refer folks to. Have you come across anything like that?
Hi Ellen, thanks for your comments! I’m not aware of a database like this, although it would be great if it existed!
Thanks again for another insightful video I always look forward to them keep up the good work 👍
Thanks Gary!
Thanks for everything you do
Thanks Miles!
Thanks RUN-DMC! I RAN to this video lol. Always excited for your updates and thankful for your hard work!!!
Thanks!
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.
It’s a pleasure. I do hope your daughter can find some relief!
Um, nightshade and peanuts are both higher in histamine so you'd have a mcas reaction IF you have mcas, without being "allergic" to them. Go see a specialist, don't rely on TH-cam for self diagnosing 🙄
Unfortunately I get better results from TH-cam-daughter went to specialist and they said “doesn’t meet criteria for MCAS but....bla bla bla” but thank you-see your comment already gave me a clue. She will have to do somersaults and lots of tests to get diagnosis now...
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
Dr Lawrence is awesome ! I have heard him speak before and find his information absolutely 💯 correct! Thank you
first I'd really like to thank you for interviewing this doctor and talking about this because it's so important and not enough people are talking about how important it is and how we have to start doing more research for this condition because it really is everywhere, I mean even one of the muscle specialist did a conference at the ehlers-danlos conference and she talked about how even during 9/11 people could have ended up having Mass cell disorder because of the pollution. This condition is so common and can be triggered by a virus it can be triggered by pollution it really can just be triggered by anything including a connective tissue disorder since you're mast cells sit inside of your connective tissue to begin with so at that point like she said it could be the chicken or the egg when it comes to people with others download syndrome who also suffer from Mast Cell activation and syndrome. That aside this was great to listen to. I've probably had mast cell activation syndrome for most of my life I also have ehlers-danlos syndrome and other conditions. I100% believe that if these covid patients are suffering from Mast Cell like issues then they definitely should go on the protocol and see how they can tweak it to where it helps them manage their life because honestly I don't know where I would be without my singular, zyrtec, and 80 mg of pepcid ac. Everybody is different so you're going to need different dosing of different medications to make it work for you. And honestly even my protocol isn't 100% perfect but I am almost 100 times better than I was before I can actually live with my animals now and I think that's also part of what the doctor talked about you have to avoid your triggers and I'm allergic to cats but I have three of them and so far I am having a good time with them in my house I'm not having severe allergic reactions like I used to so it really depends on your protocol and your body not everybody is going to tolerate something as well as others even if it is or isn't a allergy.
if you do have my Cell activation syndrome or other Mass cell disorders just remember that you can and will have allergic reactions to things you are and are not allergic to and even though you feel like you are not having allergic reactions but you have confirmed have this diagnosis please stay on your meds. I know too many people who thought they were okay got off their meds and had anaphylaxis or other horrible reactions. Please be careful with your meds listen to your doctor and above all do your research.
Sorry about any typos or something doesn't make sense the cognitive crap is for real that he talked about so brain fog kind of makes it really hard to get your thoughts out but yes I support what this doctor is saying and we really need more awareness for this condition because covid-19 aside a very large and I mean humongous part of our population probably have mast cell disorders and really are in need of help because they're being misdiagnosed.
Thank you so much for continuing to hunt down answers! I’m so appreciative! I’m not sure with the time difference if I’ll make the next session with Dr Peers, but I am curious about how clinicians counter the impact of H1 and H2 on gut biome and flora. I’d hate to take meds to address one problem only to have the cure cause more immune and GI issues than I’m already experiencing. Thank you so much again! I so look forward to the information, research and interviews you compile.
Hi Mae - I’ll ask Tina about the connection with the gut. The interview will be available on catch up too!
Thank you so much! Wonderful session with Dr Peers! I was also concerned about the H1 and H2 blockers’ affect on the gut biome as they change the pH in the gut. Thank you!
@@maeb7157 How did you get on with the blockers? I'm also concerned about taking the pharmaceutical drugs, however, I will give the supplement approach ago, have you tried the supplements that he covers in a previous video?
Yes I read the NSAID’s like that can decrease your DAO levels which breakdown Histamine ?!?
More questions than answers but a lot of insight. Great work trying to pin the good doctor down to some simple solutions, no quick fix though, look forward to the next instalment.
Thanks Ian!
very informative, it has helped put some different pieces together and whilst I don't have answers, I do have some more questions to explore
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.
I tend to agree with your point. Taking too many made me worse. Now focusing on fixing my gut.
Agreed, however, aren't probiotics and prebiotics packed with histamin? Just first thing that pops up in my mind.
@@thegeoff9253 Never heard of it, though just checked it and it looks good. Were/are you also suffering from long covid? What else did you use to fix your stomach?
@@thegeoff9253 How long do you take probiotics and prebiotics? Have you noticed any notable improvements ever since you started with your protocol?
@@thegeoff9253 Thanks for sharing The Geoff.
Thanks for the interview. The others ones are really good
Thanks Alex!
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!
Hi Sarah, thanks for the comment and so sorry you’ve suffered with this for so long!
Wow everything you listed is what I have a reaction to. Did you get the vaccine? I got it and now have post vaccine inflammatory syndrome - specifically I think I have MCAS issue. I’ve had difficulty breathing for 3 months since I got it. Starting to see a pattern with histamine foods, which I NEVER had an issue with prior to vaccine. I’ve always had an issue with fragrances.
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.
I would 2nd that, I've known I've had MCAS for 7+ yrs (aft dx #hEDS #POTS #CFS)
The gut is REALLY the key!
Hi Lori. I have MCAS, Antihistamine H2 helped for a few weeks and then I stopped. but doesn't taking them long term have side effects relating to digestion as they reduce stomach acid ?
What a brilliant doctor.
Just found out today that my mast cells are very high. Finally one thing to explain my long Covid.
Common for lots of long haulers!
Thank you for this video!!!
Cheers padawan!
Gracias por compartir la información. Eres un luchador, enhorabuena! Saludos desde España
Thank you!
I want to thank you with deep gratitude. I fortunately was guided to you from the Body Politic slack group and it’s changed my course of covid. I watched the 10 tips for long covid healing and started doing all of them and almost immediately had a positive change in my course. Your research and presentation of it is invaluable
So glad to hear it!
What tips have you used to get better please advice because I also suffering long Covid
@@manindermanku8667 I started taking a daily antihistamine and then when I was feeling more of my symptoms I’d take a small dose of benadryl- which always eased or erased symptoms. I don’t like taking benadryl so I have really gotten serious on my diet. I’m now following a low histamine diet (not easy) and I take a supplements called butterbur and drink a tea made out of ginger and turmeric. Every person and their body system is different- and I am fortunate that I have figured this out early- I’m only at 2 months since my first sick day. I recommend to do your research and really seriously look at your diet. Listen to your intuition and pay attention to cause and effect.
For example I tried eating a premade salad today and I only took a few bites but within 15-20 minutes I started getting palpitations and a stuffy nose. Bingo- the cause was that food- effect my symptoms. I then took my butterbur and drank some tea and symptoms went away. I wish you the best of luck!!
@@ariseamy1 thank you for your advice what symptoms did you have . I am having breathing problem after Covid
@@manindermanku8667 I had the GI version of covid. 5 days of severe diarrhea followed by more than 2 weeks of fevers. It never touched my lungs. If you haven’t already, please join the body politic slack group. You will find an excellent community there with loads of information and support.
I'd be interested in seeing research into correlation between MCAS and Gulf War Syndrome. I've been diagnosed with MCAS but also can check off pretty much everything on the symptom checklist for GWS. Wouldn't be surprised if GWS ends up being a version of MCAS.
Thank you thank you!!!❤
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
Glad you enjoyed it!
That was really interesting thank you
Thanks Annie!
Hello and thank you for a great video. I am in my sixties and at the end of 2019 I had Glandular Fever followed by a chest infection and then developed Hashimoto's Thyroiditis. Then it was Lockdown due to COVID. I believe that persistent inflammation is at the heart of many chronic illnesses and anything we can do to help reset our immune systems is worth doing.
Agreed. Best of luck with your recovery Helen!
Loving the videos ! Thank you so much for all your research
I got infected back in November of 2020 and all I have left of the infection is a distorted sense of smell , I’m feeling GREAT but when it’s time to eat I feel really sad , everything tastes so weird .
Have your smell improve since?
@@y2kriz06 well not really , I can't tell . I just don't enjoy eating anymore 😕 . Food doesn't taste the same since I got infected .
Thanks a lot!!!
Hi Gez, Thanks again for this. Always good to hear an expert saying it is really difficult haha. I tried the low histamine diet for 2 weeks, but i cant say i improved that much unfortunatly. The only thing that i can try is to let the body recover by its own magical way. At least i really enjoy cobra kai in the meantime.
The problem with Cobra Kai is that it’s all over too quickly!
@@RUNDMC1 I've heard a lot of good about it... will watch ;)
Fascinating, thanks. One day the puzzle will be complete 😉
One day soon hopefully!
Cheers Gez! Another great vid & very interesting interview -looking forward to the second instalment! Hope you're doing okay at the mo too 👍😊
Just about surviving. Thanks Laura!
@@RUNDMC1 Good to hear, & same -though this week's been pretty rough so far unfortunately... really hope we can all say we're doing well at some point in the near future 🤞
Completely unrelated but I only just realized that you directed/produced AfterDeath, nice!! I've a copy in my collection of many 1000s of dvds but didn't know you had a major hand in it's creation 👍
Any other films you've been involved in I should know about? Or recommendations maybe? I'm mainly into horror but love all sorts tbh, & it's always nice to think about things other than the current situation 😂
All the best for tomorrows live stream, don't know if I'll make it yet but will defo catch up at some point, hope it goes well. Take care ❤️
Laura Pip Hey that’s awesome you’ve got a copy of AfterDeath! Have been trying to get the second feature off the ground since but it’s SO hard these days. Got a couple of projects in development but the money has just dried up. So been mostly working on commercial and brand content (until Long Covid). Would still love to get something going if I find a way somehow though.
My favourite horrors from recent years... if you’re a fan these probably haven’t got past you though! Sinister, It Follows, Hereditary, Green Room, The Ritual, Us, Get Out, Midsommar. And loads more I can’t think of right now!
@@RUNDMC1 Such a shame about the funding issues for those projects, sadly know from personal experience that there's not enough support in general for the arts -even at the best of times let alone now. Would definitely be great if you can get something sorted at some point though, really enjoyed AfterDeath & would love to see more.. know it's not something you tend to be keen on but maybe something like kickstarter could be an idea? I've seen a few films lately that were financed that way & were pretty good 👍
Agree on the horror recommendations, cheers! I've seen all except Green Room, & I've been interested in that for a while as well.. Watched one called The Pit (aka Jug Face) last night, which was quite decent, & recently saw The Lodge, Cargo & Extra Ordinary which I enjoyed -the last one's not particularly horror but is quite amusing. Also finally got around to watching Nightbreed the other week, lol, after my partner kept talking about seeing it way back 😂
Really looking forward to Antlers too, when it's finally released after all of the delays due to fecking covid... Been looking into getting Cobra Kai since your video as well, looks good but I don't currently have netflix so I may get a physical copy.
Hope your week's going well anyways, & you're currently feeling okay -& again all the best for tonight ❤️
Laura Pip Thanks Laura - and yes - Jug Face is surprisingly good! That also reminded me of Apocalypto which might not be a horror film but does a good impression of one!
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.
Kindly tell us more about your healing journey of post covid MCAS .
May I ask what kind of things are you doing to better your gut health ? I'm experiencing this really bad and Noone in my state upstanding it . I need help
So sorry to hear this. It was a long and complex journey of healing for me, but I’m fully on the other side now, and so I k ow it can be done. There was no one simple fix, but I’d say it could be really helpful to reach out to a holistic practitioner/functional medicine doctor or someone like that who understand the role nutrition and looking at the body as a whole organism plays. I’ve found Chris Masterjohn to be a wonderful nutritional educator. I am also happy to support with what I know. But I don’t have one simple answer as it will be individual what each person needs.
@@ellenkittredgeevolutionary8649 Did you have muscle pain especially in the calves?
@@Aaaaaalex09 my sister has this..
As always. Thank You Gez! That one explains my most recent symptom. Some would call this symptom a Cobra Kai
Cheers Phil!
I have struggled with MCAS since 2016. 5 weeks ago I got Covid. Hit me very hard in the head and the intestines, I didn’t have many respiratory symptoms. It’s proving quite difficult to get rid of. It’s interesting to hear the connection between mast cells and Covid.
Exactly the same as ME. I got nerve pain too..
Thanks jez the work you are doing for everyone is awesome, hope you are minding yourself and keeping well! Great interview and very honest opinions from the Doctor, it appears that if this is driven by MCAS the good news is that it’s possible to find good treatments and get back to a level of optimal health, on the flip side and hopefully it can be answered in your live q+a with Dr Tina does that mean that long covid will not ultimately resolve itself if driven by MCAS.
Hi Simon - still too many unknowns re symptoms resolving but people are getting better so there is definitely hope!
@@RUNDMC1 Thanks and yes for sure its going to take time but i am confident we will all recover
Good thoughts!
Excellent
It seems there is growing thought that MCAS is in part a neurological syndrome. Overly sensitive/reactive “wiring” might trigger the mast cells hyper activation which starts the cascade of symptoms. Trauma may contribute to the origins of the syndrome.
Good interview. very interesting. Would love to know if the trigger could be viral persistence / viral debris / viral protein?
Could easily be - hoping to have some evidence on this front to talk about before too long
Very good question
I agree with you. Have been through something like co-vid: it remains in your body and triggers reactivate it or worsen. No doctors could help. Only supplements and controlling triggers
I documented all foods i ate and how i felt for some weeks and i did not find real triggers but some foods that were really good for me:
1. Salmon 2. beef with cabbage 3. big salads 4. blueberrys with yogurt
and as i am writing this, i ask myself if all other foods are triggers for me. I hope not.
I added grape seed extract and fishoil (anti inflammatory, many articles and some studys are out there for both) to my supplements a week ago and so far its looking okay but its too early to know for sure.
Summer is coming soon
ι think I might be able to answer your last question regarding triggers. it's in order of severity impact heat sound multitasking crowdy open space.
The long C cocktail of supplements works. The missing thing was that niacin for me. I have been dealing with symptoms since September 29, 2019. I can work without pain finally and it’s easier to work both my jobs without being winded. The rash also completely went away which was the most important to me as a cosmetologist. If I had the rash I’d have to be careful what chemicals I could use even down to shampoos. I was able to drop one of the medications for the lingering muscle and joint pains too. Thank you!
Thanks Chelsea!
Hello Chelsea.I have pains of the legs that just doesn't go away.i have been ruled out of having any arthritic issues and the doctor said its definitely Long Covid.what medication worked for you?I often get this persistent crash and I cant work todays in a row.What really worked for you?
I shall look forward to hearing more.
I have self-diagnosed my condition as being similar to Reactive Arthritis, in which Mast cells, as I understand it, play a part.
Hi Gez, really grateful for your effort to help yourself and others. I'm unsure I'll be able to make it on Thursday's event. So I'll pinpoint my questions in here. Is MCAS reversible or you're bound to drugs or particular regime/diet forever? And another would be as following, prolonged fasting has proven to be an efficient way of reducing inflammation, repairing cells and tons of other benefits, what are your thoughts on that?
Also thank you to Dr. Afrin for his time and insights.
Hi Josef - Re the the first question, see if you can find my response to Jason earlier on the comments here. Re fasting - not my area of expertise, will put it to Dr Peers! The show will also be recorded so you can catch up with it later 👍
@@RUNDMC1 Thanks Gez! Can't wait to hear it.
No easy answers? I like this Doc! Thanks
That was fascinating! Thanks so much for all your research.
Can anyone recommend any over-the-counter non-sedating H1 blockers?
Ceterizine and Loratidine are good places to start!
@@RUNDMC1 thank you. Hopefully, my Cypriot pharmacist will understand what I want 🙏🏼
Xyzal is a great h1 follow up with Pepcid as an h2. Realize that people with mcas take most h1 antihistamines at the maximum dose or higher. I take xyzal twice daily. An antileukotriene like singular is also very important.
my immunologist recommends allegra twice a day for long term H1 antihistamine dosing.
@@lucrezaborgia thank you. 🙂
Good interview. Good questions and editing to make it succinct too. You try quite tirelessly to induce brevity and clarity in the face of the mostly helpful and kind yet at times obviously a little evasive Doctor. I have experienced this issue. There are always 3 things more common in 3000. That's math not science. I'd have really appreciated that 3 even if they did not relate to or help me. The effort to help patients eliminate and whittle down triggers or meds that help is a dire need. It is / was very hard to gather info and heal. It took me 2 years to do 2 breath tests, find most of my trigger foods, do a gluten free diet, a FODMAP diet and a low histamine diet, take the SIBO antibiotic xifaxan to heal GI issues. Now I use cetirizine to reduce all other hives and histamine related inflammation. l found all that helped me by trial and error. I hope more people see this video sooner.
Yes I hope so too. Best of luck to you Trevor
Dr. Afrin should definitely be a speaker on the next WHO post acute covid conferences! Can you set this up??
I’m not managing the WHO’s schedule!
@@RUNDMC1 I know, but you know people? :p
The WHO do not care about people healing from anything 🤣🤣
The WHO doesn't care about health
I had zero relief from my long COVID symptoms for 20 months. I had vitamin IV therapy with NAD once a month for 5 months and had almost 100% recovery. Highly recommend trying it 👍
Thanks.
Thank you. Very interesting and informative. The old doctor is most amusing with his dry humour. I chuckled while he talked and I dont usually chuckle when researching my own mast cell tribulations. He seems to have invented a new word "a humongous range".
I really enjoy your videos, you're clear, concise and informative. Have you looked into autophaghy and how it's helping some people recover from covid? There is fellow Tom Bunker that has a Facebook group and he personally has seen some amazing results. He and another research scientist, a specialist on autophaghy are going to be writing a paper soon on the topic.
I have heard of this but haven’t had a chance to try myself or comment yet on the subject
As always Another great interview, thank you Gez!
Dr. Afrin states he has seen dramatic improvements in patients just from the antihistamines..
Any thoughts on whether the Fexofenadine or any other antihistamines improves specifically the fatigue?
Tends to be the other symptoms that aren’t fatigue they help!
this should have 1mn view by now.
Brilliant! Absolutely brilliant! This video hit the spot on all accounts. A COVID-19 long hauler, I'm up to 3,000 iu of Niacin daily, and taking 10 mg Loratadine and 25 mg Benadryl daily. Last month I experienced two trips the the ER for anaphylaxis caused by cheese. COVID-19 has altered my immune system, and in turn was responsible for all of the typical long COVID-19 symptoms which are now mostly disappeared.
oh my, how did you work up to 3000 niacin? I just starting, thought 25 was a bit much, then mistakenly took 50 and my face is on fire!!
He said iu which isn’t the same as mg!
Sorry to hear about the cheese incidents but I’m glad you’re managing the rest of the symptoms!
@@judymiller5154 It takes a good while, but it's worth every bit of time spent ramping up the dose.
@@nomebear does it help to take it with a meal? I only eat lunch and dinner.
Hi
I had Covid mid March 2020. The symptoms were explosive diarrhoea which tapered off over the first month to just uncontrolled diarrhoea. Other symptoms included fatigue, change in taste, insomnia headache etc.
These symptoms persevered until I had to empty my bowel prior to a colonoscopy two weeks ago.
Since then I have now no more symptoms.
Frank Bradley
And there you have it...over 205 symptoms documented for Long Covid, caused by MCAS and its multiple detonating signalers and God knows what else in the mix.
Poor guy, you really did try to nail him down to a few simple keys to identification, diagnosis and treatment of MCAS/ Long Covid sufferers but he wasn't able to deliver on that, much to everyone's frustration! Great interview, though. Hope I'm free to see tomorrow's live session. Cx 👌😊
i was going to say the same thing. how frustrating!!!!!
I wonder if you can meditate your way out of it. If it is falsely activated by a perceived threat....in your thoughts you can control a response. Maybe covid is a teacher of not fearing symptoms.
@@77Tadams Evidence based biofeedback feed-back does exist for lowering heart rate , but to date the is nothing on controlling immunity to such a degree that you suggest such that covid symptoms could be overcome.
@@carolenmarch-williams7417 I just took Benadryl this morning....and it was a game changer. It got rid of my aching hands. I also feel more clear. On the flip side....It made me tired.
@@carolenmarch-williams7417 I do think mindfulness and meditation could help cure this long covid. If your body is in a fight or flight...or if it is getting more of a histamine response that is over reactive to a threat in the body that it perceives. I think by lowering your stress response...it most definitely can help get this under control.
Can you do a follow up on this? Would be great to hear any insights and new MCAS research findings
We haven’t really got anything new since this interview unfortunately!
Hoping there will soon be more concrete answers. Was wondering what you have done to prevent symptoms from going off? Found any particular triggers or something that has proved useful to keep the outbursts lower?
As discussed on my other films, low histamine diet, low activity lifestyle, anti histamines, the stack, and pacing.
I had a corona infection 8 weeks ago and it was mostly fever and a massive headache for days. Then I thought I was fine except for the resting heart rate that would not go back to normal. Then all of a sudden I got knocked down, the last 4 I’ve had massive sleep problems, brainfog and fatigue.
5 days ago I started to take ketotifen 0.25 mg + citizerin 10 mg before sleep and everything has changed.
Im still not 100% back but I can at least function through each day.
Thanks Gez! I am tired. That is all.
To many tears , just looking for some kind of hope.
Awesome work and video. How’re you holding up Gez?
Getting through the days but not ready to exercise again yet. You?
@@RUNDMC1 Quite similar really but also not quite as rough. I had around 5 weeks of no running - whilst taking niacin. And I’ve started again now but using a couch to 5k plan which I never thought I’d have to do as my baseline fitness has always been able to get me around 5k previously haha... But it’s going quite well; heart rate is more sustainable, feel like it’s settling me up to improve rather than fail again, but time will also tell- only a week into it 😁
Seems you’ve really been through the wars with it. Take care of yourself mate.
Looking forwards to the video today 🙂
What's more heartbreaking for me. My daughter who's ten has this. And as an adult you could calm mcas with hard work. But a ten year old being told she can't run, play, eat. She's going to be so poorly for so long and that only adds to my shreds.
So sorry to hear about your daughter :( It’s so hard for kids to understand, it’s hard enough for adults.
@@RUNDMC1 I just know it's hard to diagnose as it is and me starving her with a low histamine very restrictive diet won't work anyway. At school they run and play get hot and eat the wrong things. It's going to be a loooong circle of two step forward one back. And everyone with mcas says it's forever. But before this I didn't have this. It didn't effect our lives enough for us to notice it anyway. Let's hope it can calm to an unnoticeable thing.
Thank you for the video! I am a long-covid sufferer and 2 months into long-covid, I started seeing a pattern in my symptoms. I then analysed my symptoms against the menstrual cycle and found really interesting correlations, especially when estrogen levels are high. I then dug deeper and found out that estrogen can have an impact on histamine release -- and basically, this gave me enough evidence to "diagnose" myself with MCAS. I have started taking higher doses of H1 blockers, changed diet (my trigger was actually Vitamin C and specifically oranges!), introduced the DAO-enzyme, Quercetin (and 6 other supplements that you have talked about before) and now started on H2 blockers as well. Basically, although I am the patient, I also became the doctor too -- my real doctor is however very supportive of my hypothesis and provides me with all of the medicine as required. But I am improving!
Very glad to hear that Maria!
Did you have insomnia as well? I’m starting to see a correlation on the days I can’t sleep and my menstrual cycle.
@@loswonders ohhh yes! Crazy insomnia which started on week 3 after first symptoms. Could only sleep 1 h a day. Then I started taking Tryptophan and melatonin (5mg) and it really helped! Update: I have done my bloods again, and it showed a decrease in bodily inflammation, so I am pretty sure everything is working :)
Thank you! Mine also started the third week. Could you please share how much tryptophan you are taking? TIA
Also, I’ve been thinking of starting birth control to manage estrogen/progesterone. Someone shared in a Facebook group that her insomnia resolved in a couple of weeks after starting a low dose birth control. I need to ask my obgyn.
@@loswonders hi! The dose is 500mg per day, and I have been on birth control for years ago still got insomnia.
Thanks for your excellent interview skill to find out the solution from researchers and experts. I am following your videos for last 2months when I searched for post covid complications and it's solution due to post covid skin rash and palpitation of my one family member and myself. I and my family members took ivermectin, zinc, vit C, vit D, doxycycline course during acute phase and symptoms continued though we were improved by home treatment and no respiratory distress and hospitalisation . Then I found your video on mast cell activation syndrome on post covid patients and following the treatment guideline like antihistaminic and famotidinealong with supplements daily for me and my family members for last 1month
Thank you for this interview - and I will listen to the other related interview, too.
One question - is the hypothesis that Covid19 may be CAUSING mast cell activation problems/disease and/or that we may have had some kind of prior predisposition with our mast cells that the virus is acting upon?
In any case, the description page of wide-ranging symptoms really validates my embodied experience of a constantly roving/ranging multi-system challenge.
I take heart in experiencing some improvement over many months but it's hard not to feel concerned that this is likely to be a chronic journey.... and, collectively, one that may take dedication and significant time and effort for the medical community to effectively understand, let alone treat.
Anyway, love that you're gathering the bread crumbs where you can. THANK YOU.
Hi Nicola, yes - that’s my thinking anyway. We may have had some prior predisposition that is now being activated and making life miserable
@@RUNDMC1 This is such a tough and often roller-coaster-like journey (physically and emotionally/mentally), I find. I wanted to check: are you experiencing SOME improvement over time (even if not as much as you hoped)? Do you still hope that some/many of us may recover in time, even if it takes 12, 18, 24, 36 months? Or has your learning just got you full of more questions than ever - or even some discouraging perception that this is more likely to be chronic? Any leaning?
Nicola Holmes Yes - I would say *some* improvement over time. Energy and fatigue levels generally better but equally my skin issues are now much worse. So the lord covid giveth and he taketh away...
@@RUNDMC1 I'm glad for some improvement (that is still better than none or worsening!) - and I'm sorry to hear that other challenges have presented themselves. I guess the reality is that there is just SO. MUCH. UKNOWN terrain we're travelling with this novel virus. Wishing you more and more understanding and wellbeing over time - and thanks again for sharing so much of your knowledge and journey as you go.
It's interesting a (fellow) computer nerd is a far better source of information than my local doctor.
I'm a retired programmer (software engineer) now a hobby boat builder. I have to work in slow motion, almost like an arctic sloth. If I do work up a sweat I end up paying for it for a week or more. I do take the vitamins. And Niacin etc. And anti-histamines. I'm at 11 months and vastly better, yet still far far from back to full strength.
Your experience sounds very similar to mine Colin.
One thing I've found is to control my heart rate and breathing. If I can control those, and avoid sweating, it helps keep me from overdoing.
Came across this after I was searching for treatments. I find antihistamine and ivermectin working for. I also find that reducing my exposure to emf radiation works. I find when I am in a remote area away from emf I am ok soon as I a am back in the city it symptoms comes back
This is amazing, i can't find the right words to thank enough both of you for this interview.
I'm a Covid-19 long hauler, (suffering for 2 years now) with ZERO help from the many doctors i have changed in this period.
Just by researching day by day and trying different foods and supplements, i recently find out about histamine and mast cells.
I the begining I had diahrea so i tried avoiding foods that causing diahrea, then i ended up eating only a small variety of foods, this leaded to other issues, at first I find out I have developed IBS and SIBO, then I find out i developed Histamine Intolerrance, so i find a list of foods to help me go through this.
I want to share with you and Doctor Lawrence Afrin my trigers (I did find the trigers long time ago, every time i mention it to the doctors, i can feel that they think ill about me, their ignorance of the subject show in a bad way, they start to ignore what i say, and I'm sure they think that im not ok).
So the trigers for me are
#1 sex.
#2 radio waves.
- (Radio waves are topical, affects mostly my fingers and hands, or the part of the body that's close to my phone.)
- (Sex trigers histamine production in my GI tract, it starts with noise, gurrrrr gurrrrr all over my guts, feels like my guts are tearing apart)
I have been in this Rollercoaster all this time, i got sick from the CORONAVIRUS, slowly got better, then i had sex, then i started to get worse, then slowly got better, then i had sex and i got worse. So this has repeated over and over in this period of time. I'm convinced 10000000000% that sex and holding my celphone close trigers the activation of the mast cells in me.
Please share this with the Doctor Lawrence and anyone who's suffering from this, scientists, nutritionists, doctors, naturopaths ..., it may be helpful, who knows, maybe someone can figure out the connection between and possibly find any solutions.
Anyone who need more information please contact me at artan32@hotmail.com
Could it be that heat is a trigger?
The human body is so complex 😩 😁👍
wrong,the human body isnot complex it has nutritional needs if they are not met they get sick ina 1001 different ways
Can't wait for Thursday !
Triggers for me : mold, histamine-rich foods, PMS, warm baths, MRI iodine contrast injections, stress, physical exertion...
How are you feeling ? Has the treatment worked for you ?
It’s made a massive difference in managing my symptoms and making them bearable.
what does a warm bath trigger? Ive noticed I delay or rush thru showers as they "wipe me out"!
@@judymiller5154 I don't know or understand the mecanism. But I do know that when I felt terrible, I would take a bath hoping it would help me relax and feel better, but it always had the opposite effect : it would make me feel absolutely horrible, about to faint, and I had to call my husband for help fearing I would indeed pass out. This was confirmed as I read on the MCAS hospital reference center in Paris (hôpital Necker) it can be a trigger
@@ApprendreSansEcole thanks. my hubby observed the same issue during chronic Lyme
@@ApprendreSansEcole overheating my body is a huge trigger for me, whether it's a hot bath or simply outside in the warm sun too long without cooling down.
It is very unusual that a doctor admits "we dont have the foggiest idea" about anything. I like this guy.
This video was very helpful ...I had to go see a doctor out of state to get answers. Not a single doctor in my state. I am sure there are more undiagnosed cases as most doctors don't know much about it. It is a nightmare. I cant take the Covid vaccine . Doctors should be prepared to prescribe Ivermectin and other preventive meds for people with this condition and protect them from the virus.
I believe that COVID has triggered an underlying genetic condition. I have Late Onset Non-Classic Adrenal Hyperplasia. Basically, I'm have cortisol resistant issues leading to Adrenal fatigue. Which manifests in MCAS and my extreme reaction to high histamine foods.
Thanks to this guy and his well researched videos I am able to cope. Also, I'm lucky enough to have an inflammatory specialist and an infectious disease specialist working on a solution and/or quality of life. Persistence is key. I'm still a work in progress.
Thanks Mary - best of luck with your recovery!
@@RUNDMC1 my Inflammatory specialist was surprised and wondered how I knew to get on an LH diet. I mentioned you. 👍
Mary, I'm very intrigued by what you are saying here. Since Covid, I was diagnoced with extremely low levels of DHEAs, but my cortisol numbers are normal. SInce supplementing wth DHEA I no longer have the debilitating fatigue that had developped in the weeks following my initial Covid infection. I also, like many long haulers, have MCAS symptoms/histamine intolerance since Covid. I've been wondering what the link could be between the adrenal gland and mast cells... You say your adrenal fatigue manifests as MCAS and reactions to high histamine foods. Could you elaborate ? What's the mechanism at play here ?
When were you diagnoced with that genetic condition (since Covid ?) ?
@@ApprendreSansEcole Cortisol is made in the adrenal glands. It manages stress and regulates the immune system which happens to include MAST cells. My adrenal glands were already stressed with my present, untreated condition. COVID overtaxed and stressed this condition.
I was diagnosed with Congenital adrenal hyperplasia (CAH) many years ago and was prescribed Dexamethasone to regulate cortisol. (CAH is a shortened medical term in my previous comment). Unfortunately, I gained some weight and chose to ditch the steroid and deal with the adrenal condition. Now it hit the fan.
@@paranoid77904 DHEAs is also made in the adrenals, which is why I was asking. I didn't know that cortisol regulates the immune system.
Also wanted to say that as a health and wellness coach who had MCAS prior to getting COVID, and now has long COVID (though I've made significant strides in my recovery!), everything you are sharing has been so so helpful. The things that seem to make the biggest difference to me in the healing I've had so far is the low histamine diet, the stack of supplements recommended in your previous films (and especially the niacin), and some genetic testing done by LifeCode Gx through Dr Peers recommendation, and starting to correct for the genetic issues which are connected to the expression of MCAS in my body (as well as the development of long COVID).
Hi do you mind sharing what gene mutations or SNPs? Thank you ☺️
@@Butterflylovely5 I have a couple different MTHFR mutations, the COMT mutation, the inability to process toxins like petrochemicals because of lack expression of the gene that does that, impairment in the gene that supports production of DAO, and a few other issues that impact my ability to absorb certain vitamins.
@@ellenkittredgeevolutionary8649 😱 I have the same, I just find out couple weeks ago, are you taking DAO?
I found this channel quite interesting and confirms my suspicions about how inflammation plays a big part in treatment of the so- called long haul covid-19.
Yes. Finding "triggers" aren't so easy since most standardized or diagnostic tests I.e. blood or urine tests only cover the abnormal levels of the norm. Lol
Women and men test out differently, and in my opinion, for example, GOUT is often overlooked when dealing with joint and muscle pain and subsequent systemic body inflammation. . The amount of uric acid in the urine may not be significant for a routine diagnosis but during an illness like covid-19, it may be transient based on fevers or
histamine levels. The trigger may very well be what you "feel" in terms of symptoms but is not the virus. Our kidneys cannot filtrate or do clearance is, like this good
doctor says, ' because of what you are putting in your body' instead of neutralizing the triggers and can be the trigger.
???.
Additionally, few doctors or insurance companies will prescribe a medication off- label even when presenting symptoms are smack dab in the your face.
Oh and I do agree that someday genetics may be able to tell who may " inherit" certain inflammatory conditions as the doctor said.
Thanks for your informative channel. ❤🙏
Pleasure, thank you!
biospacecom/article/covid-19-long-hauler-therapies-space-beginning-to-take-shape. Link's seem to auto remove. I saw this article, and I also saw a company called Oracle that have some treatments available specifically for long haulers. Have anyone looked into this?
I know this is me that you are talking about I've always been overly sensitive to smells and foods and chemicals and I feel like I got covid early March 2020 but I always tested negative and I have had all sorts of allergy problems since then it's like my body is in a constant state of allergy
Sounds like textbook LC MCAS