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Very good explanation for those trying to understand these crazy mast cell issues!! If you have it then you know how hard it is to explain this to loved ones. I have Smouldering Systemic Mastocytosis and have been through the ringer trying to find a treatment over the years. I just wanted to mention, despite what may be written on the packaging, Midostaurin can cause severe life-threatening reactions and people starting it should be carefully monitored in a hospital setting, prepared for the worst for the first few doses. And a much lower dose to start could save lives. It's also very hard on the heart so careful monitoring is needed. I say this because my doctor insisted on giving me the full 100 mg to start and was very relaxed about possible bad reactions. He wanted me to take it at home alone. Thank God I fought to at least to be in the hospital but even still I nearly died several times. There were numerous reactions which hit at once including severe neuro symptoms that no one had ever seen. No one expected me to survive but some how I did and managed to get my speech back and was able to walk again. The anaphylactic shock was epic and terrifying, my throat sealed shut numerous times even with rescue meds and soooo many other horrible reactions but luckily I survived, with some permanent neurological damage but at least alive. Had the doctor been more careful there's a good chance I may have not endured that terror. My reaction was apparently rare but it's still worth taking precautions, especially starting with a much lower dose in a hospital setting with staff trained and prepared for a severe reaction with crash cart nearby. (ICU or Trauma standing by) I had to teach my nurses in the middle of hell on how to handle my reactions, no one should have to do that. When you have a rare disease you need to be your own doctor and have someone there to advocate for you incase you can't. I say all this in hopes that it could save someone from enduring what I did. We don't respond the same way others do, many doctors don't understand that. Be safe everyone.
Oh my goodness! That sounds horrible! I'm sorry you had to experience that. This story helps to confirm my negative feeling toward drug companies and their motivation for the "sick care system." Preventive care is not as profitable; therefore, why would they bother...There has got to be a natural way to deal with this. Possibly intermittent or prolonged fasting? This technique has saved countless lives and reversed numerous conditions and diseases that doctors say are incurable. You have survived for a reason. Sending positive healing vibes your way
@@kristinkneese I agree, drugs are not the answer, the body needs to heal. We are being poisoned with chemicals at every turn... more chemicals is not the answer. I've been looking into intermittent fasting and heard great things, I will be giving it a try. Thanks so much for the comment!! Positive, healing vibes right back at you!!
Question, if allergies are caused by igE antibodies and antigen presenting proteins; how do we explain temperature, exercise, or in some cases certain frequencies of light (think the people who swell up under fluorescent lights) causing histamine reactions?
Thanks for your question. 🤓 Mast cells will degranulate not just due to IgE and antigen but also UV light, exercise, pathogens (eg. bacteria, viruses), radiation, some cytokines, complement proteins, drugs, and others. Some people have mast cells with a low threshold for degradation. There still can be a big reaction and anaphylaxis, but it is not due to an allergic response. Non-allergic and allergic factors can combine to increase the risk of having an anaphylaxic reaction.
For people with bad Mcas. Rupatadine, Famotidine is the most useful H1 and H2 combo in my experience. Ketotifen is a game changer (take at least for 8 weeks to see camp levels rise) and full effect. Hydroxizine for sleep at 2mg/kg (bw) Game changers in Stabilizing Immune System : LDN 1mg-4.5mg Omalizumab (300mg aka 2 shots a month) if every 2 weeks deems more beneficial do it accordingly Beyond that JAK and KIT inhibitors can help tremendously. Imatinib low dose 50mg for example. (100mg tabs halfed) Overall Omalizumab seems to be the best medicine for bad cases that don't reapond well to H1 and h2 blockers or have severe constant triggering of mast cell degranulation. Lots of potential meds currently in development like CDX 0159 or Mastinib. People with Mcas should know Chronic Spontaneous Urticaria is the Illness that lots of those new Drug's are approved for. Off label many Mast cell patients could benefit from those. Make sure you get the right Doctor and Insurance. Mcas can more so than many other way more life threatening illnesses ruin your life completely and Essentially render you completely useless. 🙏 good luck
Thank you for sharing this info. I get Xolair biologic injections, and also take the H1/ H2/ Montelukast/ Cromolyn Sodium combo amongst many other meds, and it helps.
@@ThisIsATireFire my last Naturopath/Acupuncturist prescribed me the typical 50mg naltrexone and then I crushed it and dissolve into 50mg of distilled water. Then dispense with an oral syringe or pipette the 3mg or 4.5mg dosages I was on. Although, in all honesty I'm finding quicker relief changing my diet. I found I started to react to the binders in my prescriptions. Like Glycolate Type A Potato Starch. Which is in many white tablets. Even otc medicines.
Very informative video. I have diagnosed MCAS and it can be difficult to explain to people what MCAS is, even to medical providers who have never heard of it.
Well done and very clear. I recently read that serotonin was another mediator being released during degranulation. If MCAS is constantly releasing serotonin, does that explain the anxiety and depression that commonly accompany MCAS? Can you do a similar story regarding these interactions?
Thanks for your question. 🤓 Yes, there is a correlation between anxiety/depression and MCAS. There's also a correlation for other allergic conditions like asthma. But it's not known what's causing this. Human mast cells make serotonin, which plays a role in memory and anxiety. But, a lack of mast cell serotonin causes anxiety and poor memory (1,2). SSRIs ( Selective Serotonin Reuptake Inhibitors) are anti-depressants that make serotonin more available. The increase in available serotonin reduces anxiety. It does seem that IgE mediated mast cell degranulation causes an increase in anxiety in mice (3). But in this case, it was mast cell degranulation outside the brain that was the cause of the anxiety. Also, Omalizumab, an anti-IgE treatment, reduced anxiety and depression in asthma patients (4). So it may be that preventing mast cell degranulation can prevent anxiety and depression. I hope this helps. More research is needed to support the many MCAS patients out there. (1) onlinelibrary.wiley.com/doi/10.1111/j.1460-9568.2012.08138.x (2) www.pnas.org/content/105/46/18053 (3) pubmed.ncbi.nlm.nih.gov/17291717/ (4) www.ncbi.nlm.nih.gov/pmc/articles/PMC6121347/
Also d3 & b1 deficiency cause depression and anxiety too, these also go with mast cell. Took me 8 years to realize I also had b1 deficiency which causes pots, dysautonomia and a ton of other things. Look up dr. Berg b1 thiamine deficiency and high carb video (3 years ago) he talks all about it and talks about dysautonomia and pots! It affects your mitochondria which I believe causes mcas along with inflammation. Sugar! Remove sugar and go keto!
Go to the dermatologist first they will the scratch test then Have them take one tryptase blood test That’s should tell them they will refer you to the lab to get that part done.
Great information. My Doctor has advised me he knows nothing of what I am dealing with, with most doctors and specialists shrugging their shoulders in disbelief and prescribing depressive medications. I have constant gut bloating at night, enormous food sensitivities, perfumes almost knock me out, skin burning sensation, severe gut pain at night time. Question, which field of specialist medicine understands MCAS.
Thanks for your comment. 🤓 That's not good to hear. It's hard to find a doctor who understands mast cells and the issue they can cause. Hang in there. Hopefully, you can see a GP that can help.
@@ClevaLab just started a GAPS program today, developed by Natasha Campbell-McBride MD, chicken or the egg, is it MCAS or chronic gut issues? we will see, thanks
There is a clinic at Brigham and Women's Hospital in Boston. There is an expert at Piedmont Health in Statesville NC, now setting up a clinic in Mooresville NC (near Charlotte). Experts are hard to find and even harder to get an appointment.Treatment is generally with a team of experts, often led by an immunologist
How do you get tested for this. My brother keeps having repeated episodes of anaphylaxis shock. He don't know why it's happening. His lips,nose,throat start closing and has hives all over his body when happens. Thanks all
He'll need to visit a doctor, in most countries, a general practitioner first and then be referred to see an Immunologist. An Immunologist is a doctor specialising in immune and allergic disorders. I hope this helps. Thanks for your comment. 🤓
I m surprised to hear that you advise ibuprofen ! First time I hear that ! I ce always been advised to rather use paracetamol.. And as for aspirin it should be used with caution as many mcas patients are allergic to it
Thanks for your comment. You're correct; up to 1/3 of MACS patients will get triggered by NSAIDs like ibuprofen. But NSAIDs can help decrease inflammation for those not sensitive to them. Also, yes, Aspirin can be a trigger for mast cells but is an option for people who can tolerate it. It's also possible to desensitize people to Aspirin, allowing for its use. But, yes, detail to include NSAIDs as potential triggers would have been beneficial. Sorry for this oversight. 🤓 The intention of this video is as a general overview and not individual medical advice. Your doctor should manage your treatment in partnership with you.
@@ClevaLab a doctor for MCAS/D 😂 I wish I had one but they re all pathetic! Wish I could go and see Dr Afrin but I live in France! Thanks god I ve got his book.! And watching videos like yours on utube also helps 👍
At 3:20 when you say some peoples mast cells may be more reactive due to IgE on the mast cells, do you mean more reactive to general mast cell triggers such as temperature changes, exercise etc., or do you just mean more sensitive to the specific allergenic trigger? Thanks! Great video 👍🏽☺️
Thanks for your question. 🤓 A higher amount of IgE bound to the IgE receptor will make the mast cells more reactive to allergen. However, there could be other genetic changes that could lead to increased reactivity due to non-allergic triggers.
explained better than my 2000 paged patho text book. modern publications and rules of plagiarism is so flawed. im sure the ORIGINAL CONTENTS of the text book were made easy to understand. however with time and different authors reading those original contents themselves and PARAPHRASING it onto their textbook made it hard to understand.....textbooks are republished every 3-4 years and it becomes WORDIER and WORDIER until you have no idea what they are talking about. sheesh.
Thanks for your comment. 🤓 Mast cells can release Interleukin-9, Interleukin-10, Interleukin-13 and TGF-beta. Which are all anti-inflammatory cytokines. It depends on the local tissue conditions if mast cells release pro- or anti-inflammatory mediators. Please let me know if you have further questions.
Hello, I was just at the allergist who is also an immunologist. She didn’t test me but listening to my experiences and what I’ve gone thru she deducted my random allergy outbreaks are related to over active mast cells. She said to treat it with antihistamines if I don’t want to have the burning and itching sensation, but I’m more concerned about what antihistamine does to the actual mast cells. If I have an actual problem in the future with foreign antibodies, would my mast cells stop reacting because they’re dopped with antihistamine? What is the downside of taking antihistamines to treat overactive mast cells? I hope you can help me with this
Thanks for your comment and question. 🤓 Good question. Anti-histamines work by blocking one of the four histamine receptors (H1R). So, anti-histamines decrease symptoms like mucous production and itching, but histamine still works through the other three receptors. So, anti-histamines help calm the mast cells down but won't affect your ability to fight off infections. The downsides of taking anti-histamines will be related to the type of anti-histamine you take. You'll need to check the product insert for side effects. You'll need to weigh the benefits of not feeling itchy all the time to any side effects. I'm not a medical doctor, so you'll need to check with your Doctor to make medical decisions. All the best.
Very instructive and well done. I have been diagnosed with MCAS but I don't have any mutation, my myelogram is normal. You seem to affirm that there is always a mutation in mcas. I am researching the cause of my mcas, currently categorized as an idiopathic mcas (secondary to an infection???)
Thanks for your question ❤️ Unfortunately, the cause of MCAS or even mastocytosis is unknown. Scientists have identified some Mast Cell DNA mutations that occur in MCAS. These mutations can make mast cells more reactive to triggers. Not all patients have identifiable mutations; I had to generalise a bit for clarity. Doctors characterise a disease as idiopathic when they don't know the cause. Idiopathic doesn't mean there is no cause, but scientists and doctors haven't identified one yet. Do you have a case of MCAS where your triggers are unknown?
Mine is "idiopathic" but it is driven by hormones. Just because they don't know the cause or don't know the specific gene doesn't mean there isn't one.
@@ClevaLab mine is idiopathic but I think covid triggered my rashes and brain fog. My friend who is a functional medical doctor says more of her patients are struggling with the same symptoms as mine since cvid
Does Ehlers Danlos Syndrome play a roll in Mass Cell Activation? Thank you so much for this information about mass cells, you have been the only one who knows how to give us a better understanding of how this syndrome works and thanking you in advance for your time and your help 🙏🌹🙏💜
I think it does. I think the MCs cause inflammation in the connective tissue causing possibly transient weakness. Reaching ketosis seems to help minimize my reactions. I find the closer to a Lion Diet that I follow, the better I feel. My muscles feel stronger. My subluxations have improved. My hypermobility and propensity to falls seems to be improving. I don't have to constantly take zyrtec all day long just to stay breathing. Along with the other meds. It just got to be too much for my body. My systemic inflammation has gone down. My auto immune antibody numbers are decreasing. Carnitine helps hypermobility and autism (brain development and functioning). I think the Mast cells have a lot to do with the inflammation. As I shrank but the scale did not always change. Nor did it always go down. But here I am sitting in a medium sized dress when I was 1x-3x a couple years ago. My activity levels are going up.
Thank you for the information. I am currently trying to find a doctor after my diagnosis here in Denver. Its been a whirlwind for years. Im praying the treatment works for me, Im not a candidate for antihistamines or skin tests. Leg biopsy next week.
Great video - very clear and informative My mum was diagnosed with MCAS years ago after developing lots of strange allergies Sadly I've developed asthma attacks in response to sulphites recently on top of a handful of more common allergies developed when I was younger What role do drugs like montekulast play? Do they stop the degranulation?
Thanks for your question ❤️ Montelukast is used to prevent symptoms of asthma but also to treat allergic rhinitis and hives. In asthma, the first choice of drug is inhaled corticosteroids. Montelukast doesn't stop mast cells from degranulating but instead blocks the actions of leukotrienes. Leukotrienes get made by mast cells and other immune cells. Leukotrienes cause constriction of the airways and increased mucous production. Your doctor may consider montelukast if inhaled corticosteroids don't have the desired effect. Avoiding sulphites can be tricky as they're in many foods containing vinegar. So even some bread and many other products will have them.
I take montelukast. It doesn’t prevent anaphylaxis, but it helps with brain fog and sleep disturbance. I take it with Zyrtec at bedtime. Sleep like baby.
@@lauriekline178 if my symptoms worsen I'll try it - unfortunately there's a history of psychosis in my family and I do have some (well controlled) anxiety so my risk profile in terms of side effects isn't worth taking the risk currently
Hi Ershad, thanks for your comment. Please see the video at time stamp 6:59. This covers how MCAS is diagnosed. Or watch the clip from the link below. 🤓 Please let me know if you have further questions. ru-vid.comUgkx6HxXEHuiFMPnijM42K8tcg40jMQ2TOdH
Thank you so much ,Mentioning your mindset in relation to the way you talk to your body is so important. I have been using that approach for 3 months and have experienced huge benefits. Love your body and tell it what a great job it's doing 👏 Might sound silly to some , But it truly has made a difference. I'm in Australia
My son was born with it 20 yrs ago and was the first born in my county with it in Ireland nobody had an absolute clue what it was and told me it was leukaemia which turned out it wasn’t thankfully . 20 yrs on in all the research we done and a million phone calls later there is still nothing can be done . They said it might leave him in puberty but hasn’t and he’s body is still covered with lessons . He was our first born and it would have made it so much easier if you knew what you were dealing with and there was adequate help . Thing’s obviously have not advanced since
My allergists says I don’t have allergies.. yet I have all these symptoms, except for massive anaphylaxis, except once.. not sure what to do. My doctor told me to to pursue it as the drugs regiments and tests fir it is horrible. Is this true?
Thanks for your comment. It's possible to have local reactions through IgE activation of mast cells without detection of IgE in the blood. Unfortunately, while some doctors may be aware of this, doctors don't have any guidelines for treating these people. More research is needed into allergic reactions like this. If your quality of life is impacted, you should try to get a second opinion from another doctor. Avoidance of triggers is the primary treatment. Find out from your doctor if antihistamines would help you.
Thanks for your comment. 🤓 Alpha-Gal Syndrome is so interesting, an IgE-mediated allergy to meat and dairy caused by tick saliva. Thanks for the heads up. 👍
Thanks for your question. 🤓 The antigen bound IgE-FcεRI on mast cells is taken into the mast cell and broken down. Some FcεRI is recycled back to the cell surface. Interestingly, this is taken advantage of in Antigen-based Immunotherapy. In Antigen-based Immunotherapy, people are given small amounts of antigen, increasing the dose over time. These low amounts of antigen are brought into the mast cell after binding to IgE-FcεRI. Low antigen levels don't cause mast cell degranulation and seem to promote tolerance to the antigen.
