Dr. Lawrence Afrin Discusses Mast Cell Activation Syndrome (MCAS)
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- เผยแพร่เมื่อ 1 มิ.ย. 2024
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. Dr. Lawrence Afrin Discusses Mast Cell Activation Syndrome (MCAS)
We are honored to have world-renowned Dr. Afrin sitting with us to discuss MCAS.
Twitter link with questions: drbeen_medical/st...
Dr. Afrin's bio:
After a B.S. in computer science at Clemson University in 1984, Dr. Afrin earned his M.D.
at the Medical University of South Carolina (MUSC) in 1988, where he also
pursued internal medicine residency and hematology/oncology clinical and
research fellowships. On faculty at MUSC
1995-2014, he was active in medical education plus information technology and
educational administration (including hematology/oncology fellowship director 1997-2010)
and practice and research in hematology/oncology and medical informatics. Since the mid-’00s, his clinical work has
increasingly focused in hematology, especially mast cell disease; he also
directed MUSC’s myeloproliferative neoplasms clinical trials program. Since 2014-17 spent furthering his interests
in mast cell disease at the University of Minnesota, he has been developing an
independent institute (located in the greater New York City area) for advancing
care, research, and education in mast cell disease; he also is working to
develop a global investigative network in this area. He has spoken widely in his areas of focus;
his extensive publication record includes some of the most highly accessed
articles about mast cell activation syndrome and a popular book in the field. He has served on editorial boards for several
journals and medical advisory boards for various organizations including The
Mastocytosis Society.
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Disclaimer:
This video is not intended to provide assessment, diagnosis, treatment, or medical advice; it also does not constitute provision of healthcare services. The content provided in this video is for informational and educational purposes only.
Please consult with a physician or healthcare professional regarding any medical or mental health related diagnosis or treatment. No information in this video should ever be considered as a substitute for advice from a healthcare professional. ...
Disclaimer:
This video is not intended to provide assessment, diagnosis, treatment, or medical advice; it also does not constitute provision of healthcare services. The content provided in this video is for informational and educational purposes only.
Please consult with a physician or healthcare professional regarding any medical or mental health related diagnosis or treatment. No information in this video should ever be considered as a substitute for advice from a healthcare professional. ...
Disclaimer:
This video is not intended to provide assessment, diagnosis, treatment, or medical advice; it also does not constitute provision of healthcare services. The content provided in this video is for informational and educational purposes only.
Please consult with a physician or healthcare professional regarding any medical or mental health related diagnosis or treatment. No information in this video should ever be considered as a substitute for advice from a healthcare professional.
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“Just stop for a moment, just stop and think.” What beauty in the simplicity of that statement. To me, what he is saying here is: be a healer, not just a physician with diplomas on the wall practicing by the book. A profoundly important message to healthcare professionals today. Dr. Been & Dr. Afrin, thank you both.
Insurance often stands in the way
Holistic medicine is the future
👏👏👏👏👏👏👏👏👏
Yes,thank you so very much!!!!
I knew my issues with multiple rebounding anaphylactic reactions to stinging insects.
It’s so refreshing to listen to doctors that actually seem to care about their patients. I have had terrible experiences having any doctor to even listen to me. It’s so hard and now I just live with it. Thank You for giving me some hope for humanity ❤️
You need to find a functional medicine doctor. It’s an entirely different world. You’ll never look back.
@@ShanonT12 i will definitely take a look into that. Thank You 🙏🏻
@@ShanonT12agree, was just dx today….stool showed very elevated secretory IgA….I’ve had horrible rash for months; seems PPI, omeprazole, put me over the edge. Histamine intolerance!
After 60 years, finally found a doctor who recognized how my life long symptoms were linked together. I've spent most of my life with doctors treating me for depression and telling me to keep taking Benedryl. I can't take it anymore without getting restless legs bad. Even when I coded in the hospital during an x-ray, they just said don't eat seafood. Male physicians are mostly concerned about my mental health. Imagine. How can mental illness cause anaphylaxis more than 50-70 times in my life?
That is such nonsense! Dr’s have been ZERO help to me either! I hope you have found relief! I get restless legs too. My main issues are respiratory. Tons of mucus all the time, chronic cough, constantly blowing my nose, shortness of breath, can’t exercise! Sux so bad because my husband and I love to hike! 😞
I'm in the same position but no longer look to GPs or specialists for anything. All I get is a truckload of pills they hand out without a clue why they're doing it except to treat symptoms without a diagnosis, most that caused huge side effects or made things worse. I live in a 1st world country with a broken health system so it might as well be 3rd world. I've resigned myself that I'll get no medical help & must find a way to heal myself.
@@criticalmass5402 Exactly, sad but true! We have to be our own advocates. Mainstream Dr’s are clueless and only give out pills like candy as to slap a bandaid on the problem. It really is infuriating! 🤬
@@criticalmass5402there are some good practitioners and they are useful for referrals to specialists and to get tests done to find answers. Sometimes it is often the way we find answers, the hard way, very independently and it’s not easy.
Allergy test naturally. Kinesiology Applied kinesiology is something that’s really gotten me through.
Osteopathic doctors are very good too. Prayers for you to not give up till you find answers xoxo
Afrin nasal spray saves my life. Dr.Afrin does also!❤
Thank you Dr Afrin. I was just diagnosed with MCAS, POTS, and hEDS after a lifetime of pain and illness. I finally feel a sense of hope that my life can be better one day.
My son might have MCAS. What is the treatment for it? I pray you are much better given this video is a year old!
Dr Afrin is one of a kind doctor who speaks the truth 😊
Brilliant interview Dr Been. Arthritis, tendinitis, gastritis, neuro~inflammation, oesophagitis, hepatitis, you name it, it is inflamed. So 12 different diseases, 12 different hospital departments, or a single inflammatory disease like MCAS?
It's such a pain to have so many symptoms like this. Joint pain is one of the worst
@Irene MacDonald can you expand on symptoms of neuro inflammation thanks
Brain fog, muscle twitching, leg numbness, depression, problems with cognition and memory
Bingo
Was a statement he made to me in an appointment in 2012... do you think you really have 10 different diseases or does it make more sense if it was the same root problem?
@@jshtaway1 you have to think in terms of histamine load. All sorts of things raise your histamine level and one day it could be a perfume that sets you off and the next it could be a preservative in a fruit juice.
The usual culprits diet wise is nuts gluten soy dairy eggs....but dyes and fragrance can set folks off too. So can mold and mildew. Lots of stuff.
Would suggest a book called Food Allergies by Dr Janice Vickerstaff Joneja if anyone is trying to figure out what's triggering their system to act up...
This was a great interview! I could listen to Dr. Afrin speak all day! I have MCAS and got "lucky" - I react to cigarette smoke and the day that I went to do labs, the gentleman next to me smelled like smoke. I had a reaction, asked the lady to quickly take my blood and sure enough, my histamine levels were through the roof! It was nice to be able to prove that this crazy disease isn't all in my head. LOL!
I know this is a few months old but what labs were done to test for this? Tryptase? And what reaction did you get during the episode? I have a lot of the symptoms of this my whole life and never knew it was abnormal until I started passing out randomly. I need to get my doc on board with this as right now I've lost my ability to drive and it's placing friends and family in a burden to take me places.
Did you have a scan of your brain?
@@sabine9012 Both an MRI and CT Angiogram, both shows unremarkable findings.
I watched this video a year ago and diagnosed myself.
I know I would not get a Doctor in Australia to listen.
So I went on a FB MCAS group to get advice from others.
I started on supplements for this.
I went to a new Doctor for long covid and she straight up said
You have MCAS
I nearly dropped through the floor.
I showed her my supplement list and she was very impressed.
She went through the dosages and timing etc and added to my list.
She did blood tests and I have high histamine in my blood.
My husband had MCAS… we used low histamine diet, along with supplements… wonderful outcome!!!
Can you explain what. you mean by both. This is new to me.
I have it too. What supplements ?
What are you doing to help your husband ? What he eat and take please.
Rhonda Tosh can you share what helped with your husband? Thank you
What worked for him please
I moved to a rental with a pool, which we later learned was leaking 400 gallons per day. We later learned the house was infested with mold. Within a month of moving there my eldest was admitted to the local Children's Hospital. He was (mis-diagnosed with Esinophilic Esophagitis) and the mast cell issues completely ignored by the Gastroenteritis...perhaps because he had an Esinophilic clinic?
Thank God my local University Hospital (in conjunction with the local Children's Hospital) had an Ehler Danlos expert Genecist. In her notes explained that I had EDS and therefore was likely to develop either Mast Cell Activation Syndrome and/or Postural Orthostatic Tachycardia Syndrome. From that point on I was no longer accused of being neurotic or exaggerating my symptoms.
Just had to say hi, so sorry for what you are going through. I have Marfan's, after a dissected aorta 7 years ago I have been having such a struggle! I also have had elevated Eosiniphils along the way of trying to figure this out, but it was ignored. Imagine surviving a dissection only to have to deal with this stuff, and being told "you are just wired differently". Other doctors straight up told me they didn't know how to help me...good luck. At least now that a new doctor, who just happens to be a really good DO, is helping with this. We only suspected this a week ago...but all the pieces fit. Prayers that you're finding relief.
So what happened with your eldest? You went from explaining about him, but then switched to you.
Can I just ask what the connection is between EDS and MCAS? Is it due to neck instability which leads to ANS dysfunction?
EDS is a connective tissue disorder. Mast cells live and reside in all connective tissues.
Mold certain bad bacteria and candida form biofilms making it hard for the immune system to see it and remove them. According to the epa 70% of buildings have water damage. Bacteria, molds, and candida, have all become more resistant to medications and that has Created super bugs.
Thank you Dr Afrin for caring about patients and for all the years of your research. Love your book and dedication.
Yes, Dr Afrin is a Rock Star!!!
Just think about the millions who might have this syndrome who don't have access to the necessary finances, physicians, medical care or testing. I'm an expat living in India. If I were to seek diagnosis for this illness, the physicians and medical staff would laugh me out of their offices. Thank you DrBeen and Dr Afrin.
So true, even in a 1st world country, sometimes you get laughed at or fobbed off for being in pain
un countable in us suffering now and you don't want to be one. leave them to suffer for no one cares and will pay the price also. they think right now they won't but all think that. Happening more in us
Hey i live in India, and really doctors have no clue. I have been dealing with this issue
This is very simple, take antihistamine plus pepcid, eat low histamine for 2 weeks. Do symptoms get better at all? While I want other people who have my condition to get the help they need I think many people are just grasping at straws, have a problem and then make it worse with being neurotic and make actual sufferers have more problems from dealing with all the neurotics. They just throw everything on the pile and then actual people who have MCAS are ignored by doctors because they think we're just nutty like them.
They can do a bunch of tests but the only way to really tell is if the treatment works. That's it. The combination over the counter might not be the BEST for you. But you should see a difference.
It was a miracle for me. An absolute miracle.
YES. We have basic insurance and going to the dr has been an injection of hopelessness.
11:40 for doctors/patients wanting to skip to the clinical indications for MCAS
Thank you thoughtful Been , I appreciate you!
Be well 🙏🏻✊✌️
This is a treat, seeing Dr Afrin on the show!!
The discussion of the mast cell evolution is fascinating.
Thank you Dr. Mobeen. Thank you Dr. Afrin. 🙏🏼
I have had Dr say oh let’s deal with one thing at a time.
Yet I knew they were related.
I was sent to many different specialists.
I have finally found a dr that recognised MCAS based on my symptoms.
Yes, my trigger is Soy Lecithin and Soy Oil. And believe me those two things are in almost every processed food. Also any eggs or meat from chickens that have been fed soy products, any pork or beef fed solely on soy beans. All of which used to be fed with corn products. Now most products that used be made with corn oil or corn lecithin are now soy. For instance Crisco used to be made with corn oil, it is now made with soy oil. I could go on and on. I have learned to read EVERY label.
Crisco was made from cottonseed oil
Soy, Palm, Canola in everything!!!!
Olive oil salad dressing made me breakout, and sure enough, I saw soybean oil is the second ingredient and the first ingredient listed is water!!
Thank you so much for this interview!!! I was sooo keen on you both talking and discussing those related topics! 🙏🏻🙏🏻🙏🏻
Best anti inflammatory diet would have to be carnivore. It doesnt surprise me that 15% of people would have MCAS when we have health authorities telling us butter animals fats and meat is bad for us. Yet meat is full of amino acids and almost every vitamin a body could need. Ive been carnivore since 2019 and feel so much better its well worth doing the 30 day challenge to see if it helps you. My doctor was amazed at how low my triglycerides were.
How do you manage the histamines that develop so quickly with meat? I also can’t tolerate any type of dairy including ghee or butter. I break out in rashes horribly so I had to stop trying carnivore and keto and I’m basically almost vegan because it gets so bad for me. I can’t even tolerate wild caught fish, I get so sick.
Im sorry to hear that, how long did you try carnivore for and did you do it under the guidence of someone ? I know you can get coaches and also there are drs. who are familiar with carnivore and inflamation.
@@makeupguru193
Loofymectin works great with inflammation...wink...wink. Also people with Elhers-danlos or are high on the hypermobility spectrum...tend to have increased presentation of mast cell activation.
It's recently been shown that nervous tissue also has mast cells...nerves control all systems. Cervical instability causes banging around of nerves. So misfiring and inflammation from structural trauma should be investigating more...just saying...its not always about chemicals need to look more at proper posture to insure optimal firing of nerves. Thanks so much for your great work and amazing guests.🌞👏
Thank you for this info. Additional discussion would be welcome!
It took me 7 years to figure this out with the help of some online support groups! Drs rolled their eyes at me. All symptoms in remission now for 5 years. Healing is possible!
I needed this so badly
Me too!
Marshalla ! ...what meds/regument is working for you!??? Im on crom sodium...
@Luke Skywalker For 1 month, eat fresh beef and drink water. If you cannot get it fresh daily, freeze it in portions right after you purchase it and defrost right before eating it in order to keep histamine levels in the meat low. After month 1, your inflammation levels should be very low and you can start adding low histamine foods that you don't react to. Once your inflammation levels have flattened out, you can enjoy the freedom to eat what you'd like in small amounts. It takes dedication, but I think it's so worth it. Good luck to you!!
Thanks Mashalla!
WOW...what an incredible amount of QUALITY information. Could have to you both for hours. Bless you. Loofy must have liked too, because he was so quiet. ☕
Dr Been, So wonderful again. I have Dr Afrin's book - a million unbelievable case histories. Thank you both.
Thanks Dr Been. Very informative.
“Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.” John 14:27 kjv
Than you I needed that! I have had delta covid and I’m not well now! Extreme Sweating from my head and stuff headache in my sinus pain in my right lung!
@@carolineleavitt4363 I am praying for your complete recovery. I assume that you follow Dr Mobeen so you know what you should do. If you have not checked out the flccc protocols they can be helpful as well.
@@carolineleavitt4363 Praying for your fast recovery. Vit. D3 high dose from FLCCC Alliance protocol-it is anti-inflammatory, a steroid, NAC is broncho protective and dissolvez phlegm & mucus, Melatonin decreases cortisol-which is a stress hormone & causes inflammation. There are arthritic med that your doctor may use and repurposed to use in inflammation in COVID.
THANK YOU, BOTH OF YOU!
A doctor on a group for idiopathic angioedema suggested I look into MCAS. Incredibly after 16 years of chronic illness I finally got better with a simple medication regimen. I wasn't depressed, I was sick. Not one doctor really took the time to figure it out. Dr. Afrin saved so many of us. Unfortunately I am much sicker than I needed to be if I could have been diagnosed and treated sooner. It took some life threatening angioedema to finally get an answer but it was me joining a group and asking how I could live with angioedema that blocks my airway. It's been 5 years since I had angioedema like that because I am treated for MCAS.
What was your mcas medication regimen that worked so well?
@@zoezzzarko1117 H1 x2 twice daily, H2 x2 daily, quercitin x daily. Low to no histamines foods. Supplement as needed with Benadryl, prednisone, rescue inhaler as needed to avoid anaphylaxis. I do get anaphylaxis if in a bad situation of multiple triggers but I almost never get angioedema which put me in the hospital previously.
@@kimberlypuravida5690 thanks so much for replying! How long did it take for this to work... and were you able to go off of them all eventually? 😲
@@zoezzzarko1117 almost immediately. No I will never be able to get off unless a new med is developed. I tried once to go off the meds and had anaphylaxis immediately.
@@kimberlypuravida5690 Have you ever tried any of the mast cell stabilizers?
Thank You So Much for posting this.
Well done Dr Bean for asking the questions to understand how you can help your patients
I’m in love with Dr. Afrin. Thank you for letting me know I’m not crazy.
I have had asthma and eczema from a child.
Then diagnosed with Auto immune at age 50.
After Covid infection MCAS has now been diagnosed.
I believe I always had it and it worsened after Covid.
You're on the ball Dr mobeen.
Thank you dr. Moreen, you helptd me very much
Great work!!! Years of suffering, no help from docs...your awesome Dr Afrin!
I have the book, and have watched alot on TH-cam re MCAs.
GP not particularly interested but happy to script H2 (I'm in NZ).
I started on H1 and quercetin myself and GP could see the improvement on the next visit.
So grateful for your sharing your information so freely.
Thank you so much
I am in NZ too - I only just found a functional medicine GP and switched to her immediately.
44:25 The best part of this talk is how detailed and in-depth is Dr. Afrin's answer to this viewer's question...pay attention.
Good catch..Isn't this Bret Weinstein's specialty?
Enjoyable and informative discussion.I am impressed that these learned physicians are willing to donate their valuable time for these discussions. Dr Afrin reminds me of the original Greek physicians: He stops to listen to, take seriously and then treat his patients. It is appreciated and I feel very fortunate to have the opportunity to hear him speak. This channel inspires me in my own nursing practise. Thank you Dr Been. Your lectures are invaluable and your patient /physician report is gratifying .🇨🇦
your impressed is ignorant to the suffering.
Dr. Afrin mentions several times that an array of treatments are available, yet names only H1 and H2 blockers (antihistamines) in particular. I understand that this video is not intended to diagnose or treat patients, but more info on medical management options would have been welcome.
Also, the body has mechanisms for breaking down excess histamines, but it appears that these fail or are inadequate in cases of MCAS or histamine intolerance. Are there ways to support the production of these enzymes and the systems that create them - or to supplement these enzymes - to help mitigate the flood of mediators that results from MCAS?
You are both healers qnd humanitarians that care about patients. Thank you it moves me.❣
I about jumped out of my seat when I saw this. Quite looking forward to this.
Dr. Been,please include dr.of microbiology/infectious diseases
Thank you..😊💚
Paleontology and the way Dr Afrin has explained is absorbing and interesting. Good job
As a nurse and a MCAS patient, I am hopeful for more research. I initially suffered severe multiple rebounding anaphylactic reactions to insect stings and immunotherapy.
I haven’t felt well since I volunteered at a Children’s garden and was bitten by a bunch of insects. I had an RA flare for 6 months and now I am out of commission every afternoon and evening with a fever and sore throat.
How did you find out what you had?
@@Tinyteacher1111 take oregano oil& tumeric..
Great discussion! I use Pepcid AC and NAC for my allergy symptoms and my lactose and alcohol intolerance are relieved by antiallergy.
What allergy med do you use? Majority of them have lactose in them 😢
@@jennifervenzon4222 Zyrtec or Claritin.
Clartin has lactose in it
It's a nightmare. It's as bad as RA, AS...that direction of hell one step under Cancer symptoms without relief of an end. It's time this was said!
Good one to find today. How does MCAS also possibly describe long Lyme?
Question. Does the vaccine cause immune suppression? Have you tested people to see? I see someone that uses biomagnetics. He can read your frequencies for covid and many others bio markers. He consistently reads his patients lose almost all their immunity/antibodies after vaccines. He consulted with doctors in Italy, Spain and London who have experienced the same thing. They blood test them besides biomagnetics. Have you done that?
A couple of my relatives got a bad cold virus a month later, but it might be coincidental. I wondered if it was a delayed antibody response though because I didn't catch it from them which was unusual. I am in pretty good shape considering what the virus did in March 2020. Thought I would be permanently disabled by it.
Pfizer have stated the immune system is suppressed for around 6 weeks so it looks like it does dampen it.
@@asmrfoodieuk7965 Why on earth? Most stimulate the immune system
This guy is great!
Would love to know if fasting 5-7 days (according to Dr. Valter Longo's great work) might affect the mast cells through autophagy. Basically, is it possible to absorb damaged mast cells through the process of autophagy and replace them through T-cells, by the fasting process?)
Dr Mobeen, please consider having Dr. Longo on your show about how fasting might effect long covid and also MCAS.
Would love to know we if this would help
I have to wonder if you have to first correct your issues. Heavy metal toxicity, for example.
I agree fasting may be a good place to start & then do an elimination diet to find the trigger foods plus keep an eye on other stressors, i.e environmental etc to narrow in on where the activation is happening. And then obviously proceed with treatment.
Hmmm. Think I am in this group - diagnosis of Fibro/ CFS / 10 other things. But also : Chiari 0 ( from neurosurgeon expert), tethered cord, mild scoliosis, possible EDS. Wondering if a “ not perfect “ blood brain barrier contributes to MCAS ?
That was GREAT!
Brilliant.
QQQ All I can find is injectable IVM. Is it safe to take orally? I'm concerned about the 40% by volume Glycerol Formal.
Very interesting interview. big THANK YOU. I would like to buy dr Lawrence Afrin book on Covid 19- Update. Could you tell me where can I get this book as in Amazon I cannot find it? I live in London. Thank you.
Like from chemtrail sprays? Or additivescto our foods and water?
Cannot Thank You Enough for Getting Dr Afrin to Enlighten Us on MCAS......A Big God Bless Dr Afrin...
Very tempting technical,for specialists,but nonetheless informing
My question; is it actually a cause or a symptom of a previous inappropriate stimulation due to environmental or metabolic issues?
My son has high auto lymph numbers and endocrinologist only looked to rule out what we have in our immediate family. Pretty sure my two adult daughters and I may have undiagnosed MCAS. Wonder if that is something we should test all four of us for?
I had a violet rash with it on my face and chest which I initially thought was carcinoid syndrome. It slowly resolved after the virus, many months later. It was obvious that's what I had because it responded to mast cell inhibitors to some extent. It is not possible to get officially diagnosed in NZ unless you see a particular rheumatologist who specializes in it so you have to be very wealthy just to get a couple of lab tests done. I would be interested to know which infections cause it. A lot of people are sick with RSV in NZ.
You are right . Man made hormones don't agree with every body. Many in my area suffer but Doctors are starting to see this here and won't give out Man made hormones as much as they use to.
A Stevens Johnson Syndrome type response?
@@SweetiePieTweety Post viral MCAS was the tentative diagnosis by a specialist but never had the labs done and likely never will.
Had the tryptase test, histiocytes were the issue, not excessive mast cells. Virus may have triggered excessive histamine response as part of the post viral syndrome
Does anyone know why it's now impossible to get sodium cromoglycate in inhaler form (won't name the brand). Dr. Afrin, it would be really great if you could come to the South Pacific to work in NZ. Maybe you could set up private practice or distribute some sodium cromoglycate products so you have some time to enjoy the scenery.
Theres a shortage of this drug worldwide, is there any alternatives?
@@asmrfoodieuk7965 It's not a difficult substance to make so it makes no sense there is a shortage. Montelukast is the only alternative I know of.
My son, a previously healthy young man..35yr old, is now a long hauler and is only able to eat only very low histamine food. He hasn’t had a normal bowel movement since January... he takes anti-histamine supplements to help him when he eats. Headaches, fatigue/brain fog, other weird covid symptoms are a part of his life. We have wondered about Mass Cells being involved.
Sodium butyrate and oral cromolyn helped me with constipation from mast cell activation syndrome.
As a person who has MCAS I’ve developed a strong interest in long covid bc it has all the hallmarks/symptoms of the mast cells playing up including POTS. I personally follow a low histamine diet along with the antihistamines and supplements that Dr Afrin suggests. These are at much higher levels than the usual RDA which is rarely talked about. Interestingly, Dr Mobean has done videos on vit D3 and covid and the dose. This is one of the first supplements we use in MCAS and at the same high dose. I’d recommend looking into supplement doses or maybe join one of the MCAS support groups if you wish to learn more about it. Either way I wish you and your son all the best.
@@TheKayannh Can you direct me to the MCAS support groups thanks
I take allegra, 2 60 mg tablets twice a day. Sometimes supplement with a couple of 10 mg claritin during allergy season. I was diagnosed by the great Dr. Philip Miner who retired several years ago. I had biopsies of the stomach and large intestine to confirm. It sounds crazy, but it gave me my life back.
@@koreyb his diet is so very limited, most if these foods would almost kill him. He’s landed back in the hospital for a slight deviation .
What type of test would we have our doctor run to determine whether we have MCAS?
I've been Dx w/ MCAS. Rx's have worsened it. High quality supplements supporting my immune system have been the best help.
Recommendations? NAC?
Which supplements have been best?
What sups helped?
I react to most Rxs due to the fillers. Supplements and compounded Rxs work best for me as well.
In time they can help but many don't fully recover. i wounder if i will fully recover. going on for years now. Still waking shaking depression Vertigo. but easing up a little more.
I have been following this subject for a while now, and I am absolutely intrigued by this. I read that increased Co2 in the body (due to stress/shallow breathing) is a signal to Candida to transform from the yeast form to the hyphal form (which can damage the intestinal lining). Leaky gut would allow Candida to become systemic. Is it possible that mastcell reactions could be triggered by Candida in this form? If so, this might explain why the mcas reactions affect such different areas in the body. The mastcells might have a very valid reason for reacting. Doctor's claim that systemic/invasive Candida only happens to patients with HIV/severely immune compromised, but this may not be entirely true.
many MCAS ppl do well with DAO capsules.
Mercury toxicity also destabilises the bodies ability to stabilise candida..it also kills gut microbiome and can be a MCAS trigger. ..I was researching my history of disease after dental abuse from many years ago. Its incredible what main stream doctors do not understand due to lack of training. But also found your information very interesting..thank you
or increased carbon dioxide from wearing masks all day as the FLCCC docs do
I am prepping for mercury chelation to Hopefully improve my MCAS
Wow!
Many people with MCAS also have some form of Ehlers-Danlos syndrome which also shows a tendency towards excessive bleeding.
so what else can we test for, other than Tryptase ?
So, is there a link between EBV & MCAS?
Yes. I think there is. EBV interferes with several parts of the immune system, including establishing reservoirs of virus in spleen, liver, pancreas. When viruses mess with the liver, then it stops effectively cleaning the blood - and the residual things that didn't get filtered then activate those mast cells. That's my thought. I'm 32 years post EBV infection that destroyed my body.
Is the mass cell activation hyper meiosis? What regulates meiosis and mitosis?
What should I do as a doctor?LISTEN TO THE PATIENT... then how about realize that the symptoms the patient is describing involve multiple systems and cannot be explained by another diagnosis?
So if antihistmines have never worked for me does that mean I couldn't have MCAS?
Thank you I was injured about 6 years ago I suffer with akathesia and it has created mass cell reaction.
where is his center in NYC? STREET ADDRESS AND NAME OF CENTER?
Is it possible to see Dr. Afrin? I have dysautonomia/ME x 28 years. ME started after virus and dysautonomia presented after anaphylactoid reaction to ibuprofen started at 32..lost my whole life.🙏💙🙏
How does one know the difference from regular mast cell activation syndrome and mastocytosis lukemia?. Can you answer this question for me dr.been?
Mastocytosis will show up on a bone marrow biopsy, and MCAS will not. I had my bone marrow biopsy last week and we ruled out mastocytosis and confirmed MCAS for me.
Diamine oxidase (DAO) is an enzyme that helps break down excess histamine in your body. A lack of this enzyme causes allergy symptoms. Why is this not discussed?
Yes good question….
DAO enzyme breaks down the histamine from the food, but not the histamine synthetised in your body.
@Leif Kring he addresses it in another video (DAO)
He doesn’t name ANY supplements. So this was not an omission from a list.
My skin hives looked almost like long blisters just by carrying an aluminum ladder. The ladder was resting on my wrist and had indented the skin from the weight. A few minutes later those indented places on my forearm turned into huge hives. So to me it’s not just a “food allergy”. Although I believe soybean oil or soy lecithin may also cause me hives…
Is rosacea (+fibbromyalgia and chronic fatigue) a possible indicator of MCAS?
Rosacea has a histamine component to it so I would say yes.
All of the docs here say inhaled steroids don't exacerbate this even when it stares them in the face
Oh yes. I have been diagnosed with mcas. Interesting enough, I have diabetes and when I started taking metformin the Rosecea, disappeared from my face. Pregablin for fibromyalgia and pain is gone.
Does MUSC in Charleston SC use FLCCC protical for covid
I would like t o know also. I live in Chas. SC where MUSC is located
Is MCAS related to tumour inducing principle of the 60s?
Difficult to know if u r positive to covid when you have mcas with muli systemic inflammation..
I tested several times but always negative.. My son got Delta variant and I took care of him and when realizing I had had the same symptoms, both got tested + blood tests.. He was +to delta and had antibodies I was negative and no antibodies.. Weird..
What test did they use for delta?
My grandson caught covid in 2020. . Actually 9 of he 12 people with him caught it too. He had all the symptoms but tested negative There is
is problem with the test.
@@a.d.b535 yes there are pcr tests that detect variants they search for variants through a special method.. Then you know which variant you re positive to.. And no, it wasn t the flu.... SERIOUSLY.?
Wow this is exactly what happened to me. What antibody test did you take as it appears some are better than others.
@@asmrfoodieuk7965 hi, I m French so I did the test in France, RT - PCR test aiming detection of mutations
E484Q, E484K AND L 452 R .. So that should be the 3 major variants of interest or preoccupation as they call it... I Don t remember which one is the delta as I m negative and I Don t have my son s data with me.. But for him, it was clearly noted that he was positive to the delta variant..as for antibodies
my Gp told me that I should do another blood test in a couple of days.. As I told her last one was on July 23..she said you have to wait for some time before your body produces antibodies... I think early next week should be the right time..
I ll keep you posted.. Lool
I was just diagnosed based on symptoms by my allergist. She has me taking Allegra twice daily and Pepcid once. I just started this regimen yesterday. She did not want to run testing because she told me it was not effective in diagnosis and said she doesn’t truly believe in MCAS specifically. Should I continue to seek out a medical professional until I find one who will also run the testing? And how long should it take to start feeling better after starting this? I’m also trying to work through diet because my hives have occurred 5 times in the last year all to different foods, once too no food
Hows your progress Summer!??? I started crom sodium three months ago...my docs didnt belief either...
@@lukeskywalkerlucasfilm I actually began working with a functional practitioner months ago, I do still take the H1&H2 blockers but was still getting hives every few days even taking them, but my practitioner started me on lymphatic drainage supplements and then parasite cleansing supplements and since both of those treatments (ongoing except for parasites due to new circumstances) I have not had a hives flare since about 2 months I’m working with her! And haven’t dealt with MANY of the symptoms of histamine intolerance either. I am now at a point I’m not sure I’m dealing with any symptoms of it or if the things I still deal with are related to just not being as healthy as I once was, plus had my gallbladder removed and I think that has me dealing with bloating and belly pain more often.
Wow! Thanks for sharing! Same story. Years of anaphalaxis, hispital visits, illness, They took my gallbladder because they didnt know what else to do. Chromulyn Sodium, Ketofin, and gastro drugs not working ☹🤔 Working with functional doc also! Let me know if something works for you! 👍😉
@@lukeskywalkerlucasfilm luckily I never got anaphylaxis! But definitely glad I found my functional doctor! Hope you find more revenge as you keep going
She sounds lazy....I would get a more inquisitive allergist. Mine did the same for me . I kept having anaphylaxis during and around menses. I recorded the events and symptoms for myself because I knew something was just really weird. I thought anaphylaxis caused your throat to swell shut. I was ignorant . I took my journal to allergist and he said yep. Catamenial anaphylaxis. No testing no looking at history....gave me caratin and epi pen. Now I'm having worsening symptoms not related to menses and have been researching MCAS. Will I have to diagnose myself again....smh
I recently started seeing a Doctor for long Covid, when asked about my symptoms prior And after covid. I said I have itis
every itis you can imagine.
I have cold indused uticaria and I’m sure Mcas . Is it ok to get the covid vaccine? I am very nervous to get it because I get hives from everything
I wouldn't get a vaccine I had two of them inflammation rampant through my body that's just me
Can vitamin D3 severe deficiency cause mast cells to come into play to counteract the immune deficiency? Then what if the TSH is up high as well/hypothyroidism??
What he says sure fits
Hello Doctor....my mother is a patient of prolong covid.I m from India.Can we get your appointment to discuss on her current situation and the treatment for the same.
Regimen for my daughter with MCAS: Claritin, Pepsid, Chromolyn sodium, GU Energy gel for amino acids
Also low histamine diet
I didn't even have to go up to cromolyn sodium. Claritin, pepcid, allegra 60 mg tablets were all it took. Amazing.
@@bennyhogan6326 what is considered a low histamine diet?
How long do we need to take these medicines
Your opinion about azelastine in this matter?
Wish he stayed focus and actually answered the questions instead of what seemed to be his predetermined script so that the direct questions were answered and not skirted. He is a genius doctor I admire, and we all have our off days
yea, did he ever mention the 10-20 various lab parameters that have to be tested? Because he got asked but didn’t answer specifically untill 25 mins in 🥴
Are you saying you wanted to know his "spirit animal" and favorite snack. I was actually embarrassed for Dr Been for asking that after he just finished saying they only had time for limited questions. Come'on man!
@@theresemarie9569 i wanted to know the specific lab parameters that he tests 🥴 But i found them on german websites 😅
I was diagnosed with what looks like ‘palindrome rheumatism’ inflammation near joints, joint pain. Very disabling. Also have brochal inflammation, sore throats. History of serious long term menstrual bleeding. Recent hospitalisation for tongue swelling rapidly in response to blue cheese! Various potted history of poor immune response, ie over response or none. So lost and tired of fighting. My Dr has never heard of MCAS
Chek 2 gene mutation have some qualities of MCAS OR MASTOCYtosis?
Stool study showed very high secretory IgA!! I’ve had a bad bad rash for months after a stressor of 6-mo PPI rx. I was dx with Mca
I do wish he had gone into a bit more detail of the potential triggers in the air we breathe.
The illusion that what we breathe, isn't too bad and has only a negligible effect, so not worth improving, is delaying many patients recovery.
Second guessing your endocrine disruptor exposition, when your endocrine system is seriously disrupted, is nothing short of insanity. Ignorance is only bliss, when it doesn't activate your mast cells.
can chronic parasitic infection (pinworms, roundworms, and/or tapeworms) cause the syndrome? (allergic to everything) ty
Don't think about worms only. Microbes like mycoplasma, barbesia , Bartonella and some more can be. They are also in Lyme.
Artemisia annua, uncle Iver or fenbendazole can help. One remedy can be enough but sometimes there is the need to use one after other.
39:00 “Long and expensive therapeutic path”….
I called this Dr’s office as I was interested to see about scheduling an appointment. Very convenient that it’s within 3 hours of where I live!
However, he does not take any insurance and NOT convenient in cost!!
The first appointment is $3000 and same with the 2nd appointment! For EACH additional appointment the cost is $650. Also, the cost of the testing is out of pocket and not included in the costs listed above!!
How the hell are people supposed to afford this?! Talk about not making it easy. Ya know, some people don’t have that kind of money, especially when they’ve already spent upwards of $20,000 on so many other Dr’s and treatments trying to figure out what’s wrong! Expensive path with this guy for sure!
And then what? Do you have to stay on medications for the rest of your life to “manage” this disease? What about gut health? Is there any way this has to do with a leaky gut? Or how about chronic Lyme disease? I know Lyme can also be a trigger for MCAS. I was diagnosed with chronic Lyme last year and believe I’ve had it since I was a kid, which would explain weird issues I’ve had for 20 + years, which brought MCAS to light!
Would be nice if this Dr. Made the office visits and testing a little more affordable for people who are absolutely miserable and suffering with this!!!