And theres a NasalCrom thats actually over-the-counter. Dr. Lawrence Afrin: Thanks, Michael. My dna test tells me I have a dao deficiency as well. I feel like theyre probably opposite ends on one spectrum. Right now Im trying N-Acy Glucosamine (NAG) Longvida Curcumin (Crosses BBB) , Melatonin 1mg before bed and L-Thenaine. Mast Cell Activation, Part 2 with Dr. Lawrence Afrin Take the time, figure out which antihistamines are going to serve you best. DrLA: Sure. Environment (consider if mold or pets might be the issue) Treatment Level 5 - with MCAS specialist preferably. But, nevertheless, itll be an obvious, significant improvement. Its probably the 64-trillion-dollar question. Theres some literature, obviously not formal academic literature, but theres some information about this out on various patient self-help groups. Thank you for the information. Some drugs block DAOan enzyme in the gut that breaks down histamine, May have benefits beyond mast cell stabilisation, Supplements are bioactive compounds that may have unacceptable effects, They may interfere with known medications, They still have to be processed through the same liver detoxification enzymes as pharmaceuticals and thus may have unacceptable side effects, Supplements may also contain excipients that produce unacceptable side effects, Stabilising the immune system and reducing inflammation, Green tea (EGCG, L-Theanine) 2 to 3 cups daily. They may be on a spectrum together, Tryptase levels in a serum can be helpful in diagnosing Mastocytosis, Blood and urine for elevated levels of various mediators, Usually comes down to 8-9 inflammatory mediators, Chromogranin A (consider patients health history and condition), Plasma Heparin (often not very sensitive), Afrin has found identifying dietary and environmental triggers and avoiding them to be very helpful, Identify an OTC H1 blocker and H2 blocker that works for you, Cromolyn is good for digestive involvement, because its not absorbed. Thank you for some positive information, my brother has been diagnosed recently and the little Information you find out there is so bleak and scary. But most mast cell activation patients eventually can identify some mast cell-targeted regimen, usually pretty unique to just them, that gets them to the point of feeling significantly better than the pre-treatment baseline the majority of the time, more than 50% of the time. I have more information, organized on this page, that discusses MCAS. The higher dose or frequency is not going to be the answer for you. Hey, everyone, in case youre someone who is in need of help or would like to learn more, I just wanted to take a moment to let you know what resources are available. The average patient is somewhere in the middle. Antihistamines to treat long COVID: What you need to know Hi Laura, I dont know where you are in California, but I live in California and am MCAS positive. So I dont always have the time to make a home crockpot of food and of broth. DrLA: But that is measurable at some reference laboratories and also as a marker of mast cell activation. This article is based on scientific evidence, written by experts and fact checked by experts. Persistent gastrointestinal symptoms such as cramps, abdominal pain or vomiting. And when it comes to the H1 blockers, since fatigue is such a common symptom in this disease, I prefer the patients try the non-sedating H1 blockers rather than the sedating H1 blockers. And theres a long subtitle to it. --JENNIFER ROBIN KULIK, Founder, Mast Movement. Now, to be sure, there are occasional mast cell activation patients who clearly find significantly better response at a slightly higher dose than the entry-level dosing. Over the counter H1 and H2 blocker. We learn, all in all, probably a few thousand diseases. at the Medical University of South Carolina (MUSC) in 1988, where . To reduce histamine levels in your body, you should adopt a low histamine diet. Well, there are present in every vascularized tissue, but they dominantly site themselves at the environmental interfaces and also perivascular sites. Dr. Afrin earned a B.S. MCAS is something to consider when you haven't responded to anything else: diet, lifestyle, gut treatments, thyroid. Histamine 2 blockers Famotidine (Pepcid, Pepcid AC), Cimetidine (Tagamet, Tagamet HB) and Ranitidine (Zantac). And its just toxic and unsustainable for all sorts of reasons. The symptoms of MCAS vary greatly. And some patients even get or make compounded cromolyn cream for application on the skin. These doses are general recommendations. So these are easy, convenient, healthy and shelf-stable, so I dont have to worry about potentially having to throw them out. And thats in a mast cell biology and disease textbook. And then, you talk about the immune system, how that gets affected. Certainly, its not tooting your own horn. The more you can narrow it down, the more you can pay attention to living the life you desire. But like I said, it only takes about a month with each therapy. But theres a nebulized cromolyn that you can inhale into the lungs. Sacklers Gave Millions to Institution That Advises on Opioid Policy None. Its been a scary time and I am thankful for a fantastic doctor who eventually helped by putting me on an exclusion diet (1 week of potatoes and rice only and building up food items every 2-3 days), H1 and H2 anti-histamines and finally after a few weeks debate Xolair. Impact of ABO incompatibility and early antibody-mediated rejection on Its very unlikely youre going to find local physicians who are familiar with this. There is testing that can be done for this. When it comes to natural treatments for MCAS and mast cell activation disorder, the most effective work in the following ways: With that in mind, here are some of thebest natural treatments for MCASaccording to the mechanisms they influence. And I just want to get out there the notion that were actually very fortunate with this disease in spite of how little we understand about it at present. We learned more in this article than any information we have received over the years. Also that you include the gene problem is great. P.S. Need to test blood levels, Nightshades, including tomatoes and potatoes. The Future of Functional Medicine Review: Elemental Heal (Gut Healing Meal Replacements), one study showed 22% of patients with unexplained GI symptoms had HI, https://www.drtaniadempsey.com/aboutdrafrin. EGCG is the most common polyphenol found in green tea, Inhibits calcium influx into mast cells, thus preventing their degranulation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4315779/ Youve got ranitidine, most popular trade name is Zantac. So step one: identify the triggers. MCAS: Treatment - Mast Attack Dr. Patel was personally involved in the care of the patient. Such doctors like you are currently still rare in Germany. Scientists present protocol to determine hibiscus and sleep quality I am guessing that this on this page is actually an ERROR??? DrLA: Whereas, above the waterline, youve got the various allergic-type phenomena and then the rare disease of mastocytosis. My low histamine diet guide did not come through! But its not going to get absorbed. So you take that list of 200 mediators and you cone it down quite a bit based on whats available for testing in the clinical laboratory. It subsides gradually but always come back another day. DrLA: Well, loratadine is Claritin. Dr. Theoharides, a top mast cell researcher, has produced a product called NeuroProtek, which contains quercetin, luteolin and rutin. For patients who have been long . And of course, once you finally nail down the right diagnosis, now youve got a path forward for treatment. And you also cone the list down based on the mediators that are relatively specific to the mast cell. All of these pages are at the drruscio.com URL, which is D-R-R-U-S-C-I-O dot com, then slash either gethelp, gutbook, or review. Okay, back to the show. So all sorts of irritation and pain in the urinary tract, sometimes the genital tract, and there can be other inflammatory type problems in that area as well. A plant based, non-dairy, gluten-free, non-processed diet has been paramount. I want to try your natural remedies. Managing post-surgical pain without opioids - Mayo Clinic I kept reading it . And just as a few examples, I know that in some of the research on histamine intolerance, the diamine oxidase enzyme, the DAO, is tested and I know values between 3.0 and 10.0 are considered low. And if the patient is presenting with a very high tryptase level or with the clinical manner in which mastocytosis typically presents, then absolutely, you need to undergo bone marrow biopsy. Or are these just different names essentially for the same thing? Are you doing a combination? DrMR: So its fair to say that youre both participating in this area from a clinician perspective, treating patients, and youre also performing research. Glutamine, Immunolin, vitamin C (timed release), natural antihistamine blends, quercetin. Simone JV, Afrin LB, Byers T, et al. You mentioned in the musculoskeletal system a lot of pain, diffusely migratory pain. So there is required an awful lot of patience and persistence and a very methodical approach in stepping through trials of the different therapies. Definitely check them out. And youll walk in the exam room, and you the doctor, your head will spin 360 because you cant believe how much better they look. Theyre getting excessively activated when histamine docks with those cells. Thankyou so much for this I hope you find this information helpful and wish you the best of luck on your healing journey. This was a fantastic discussion with clinician and researcher in Mast Cell Activation Syndrome (MCAS), Dr. Lawrence Afrin. And in the meantime, the term MCAS is what we apply to these more nebulous disorders of activation that dont otherwise fit all that well with the other forms of mast cell disease, which we had known about for a long time previously. All rights reserved. However, because most patients with MCAS present differently, it is a good idea to implement these with the guidance of a functional medical doctor who is experienced in MCAS. Thank you a million times over for this information, I keep in close to me when Im getting discouraged looking for a doctor in CA who understands MCAS. Once theyve recovered, they need to just think about what they were doing, what they were exposing themselves to in the minutes, the hours before the flare emerged to try to figure out what their triggers are. Thank you million times over for this information, could you tell me what to eat more in mastocytosis to reduce histamine. She is patient, understanding and very detail oriented. DrMR: Theyre diagnoses of the symptom but not of the cause per se? Although, its the case that most mast cell patients arent going to reach optimal improvement with one medication. https://www.nature.com/articles/srep39934 With a chronic illness such as MCAS, it is possible to live a full lifethe treatment just requires a careful, comprehensive approach. Every doctor who works in the mast cell disease arena has seen plenty of cases in which patients take oral cromolyn, and they wind up having improvement in symptoms that seem to have nothing to do with the GI tract. So I counsel my patients, patience, persistence, a methodical approach, trying to make just one change in the regimen at a time. Mast cell activation disease: a concise practical guide for diagnostic So, neurologically, you already hit on a lot of things like fatigue and cognitive dysfunction that a lot of patients describe as brain fog. There can be a lot of other motor and sensory neurologic issues. Theres some thinking that maybe there are epigenetic mutations which actually might be inheritable, that might be at the ultimate root of this, and that there are interactions that occur between certain epigenetic mutations and various cytokine storm patterns that emerge from various stressors relatively early in life and that its the interactions between these cytokine storms and various epigenetic mutations that might be driving the formation of these mutations in the precursor cells to the mast cells. And although not all of them are going to be open access, a good number of them are. So a lot of patients describe intermittent problems with shortness of breath, much less commonly wheezing. I know of courseand please correct me if Im wrong or off on any of these, but we may be able to provide a few buckets here that we can organize these into neurological irritability, depression, brain fog; dermatological rash, flushing, hives, runny nose; rheumatological joint pain; and then also maybe things like insomnia, fatigue, as being some of the more common symptoms but not only limited to those. Theres nizatidine, and its usual trade name is Axid. You could experiment with higher dose for 2-3 weeks, but if it doesnt clearly help, then reduce dose. I think youre really going to help a lot of people with this conversation today. In others, symptoms may develop from a young age and slowly become worse over time. DrLA: Sure. DrMR: And where can people, if they wanted to, read some of your papers or hear more from you and/or just learn more about this area at large? Revive a sluggish thyroid by knowing what lab values and treatments to pursue. I really dont want to go tooting my own horn here, but I did publish a book last year on MCAS that was intended for the public, the lay community. LYME SCI: The agony of mast cell activation syndrome (MCAS) Tag: Dr. Lawrence Afrin | Hoffman Centre Its a good thing when I can help an individual patient with this. Testing for MCAS is somewhat complex and confusing, as positive biomarkers may only be observed when a patient has a flare up. Please check your spam folder and let us know if you have not yet received it. He has numerous publications and has presented papers in various national and international forums. So grateful for you concise overview. *Inquiries relevant to the practice only. Whereas, for some of these medications, I know they get advertised as just once a day dosing is adequate. So thats right: the mast cells produce histamine. Theoharides' lecture on mast cell . And the only other mast cell diseases we knew about were the rare disease of mastocytosis that oncologists dealt with and an allergy that any primary doctor and allergist, too, can manage. Take care, Jeri Allen-French, many thanks for these precious informations and for sharing with us your huge holistic knowledge. (Institute of Medicine Committee on Assessing Improvements in Cancer Care in Georgia) (2005). Cromolyns an interesting molecule. And Im getting the inkling that the medications here may be more of the brunt of the argument. First and foremost, this includes any form of alcohol. Disclaimer: (1) The information provided on this website is for educational purposes only and is not intended to diagnose or treat any disease. Thank you for your inquiry. Hi Marilyn, Sure, its frustrating for both the patient and the practitioner at present that we dont yet have any methods for predicting which treatment will be most likely to help which patients. Yeah. But if you do, all of that rule-outs and you still find an elevated chromogranin level, pretty good bet that its coming from mast cell activation. Histamine 1 blockers Hydroxyzine (Atarax), Doxepin (Silenor), Cyproheptadine (Periactin), Loratadine (Claritin), Fexofenadine (Allegra), Diphenhydramine (Benadryl), Ketotifen (Zaditen) and Cetirizine (Zyrtec, Reactine). But its turning out in mast cell activation syndrome, tryptase is usually normal. For more information on Dr. Afrin or to read his latest blog posts on Mast Cell Activation Disorder, please visit https://www.drtaniadempsey.com/aboutdrafrin, Need help or would like to learn more? DrMR: All right, Larry. And theres nebulized cromolyn, and that, like the oral cromolyn, is prescription-only. And quite often, its recommended to undergo what we call bilateral bone marrow biopsies, one on each side of the backside of the hip. CBD is more helpful than THC. Afrin's hypothesis laid the groundwork for the identification of a spectrum of diseases that make up what is now called . Trial and error with both drug- and non-drug-based options is often the name of the game. Or, is it more likely the patient just has one thing going on, which is biologically capable of causing, directly or indirectly, most or all of what the patients been suffering? Again, I am willing to travel but cannot afford to waste money on quacks. Mast Cell Activation Syndrome with Dr. Lawrence Afrin He is an expert in the management of thyroid, parathyroid, adrenal and . Please do not apply any of this information without first speaking with your doctor. This has given me hope and I will share it with my bro???????? Theres the GI tract; all sorts of issues in the GI tract with reflux and nausea, sometimes vomiting and diarrhea or constipation or, even more commonly, sort of an alternating back and forth between diarrhea and constipation, which is just one example of the many opposites you can see with this disease. Not nearly good enough. Its been terrific, and well definitely look forward to having you back on. When Vitamin C is reintroduced, histamine levels fall exponentially, There is very little evidence in the literature, however, to support its use as a natural antihistamine, It is frequently combined with quercetin in supplementsa popular supplement is Natural D-Hist by Ortho Molecular Products. You just usually dont see anything helpful. Your anxiety, insomnia and pain may increase due to further slowing down of the excretion of these excitatory chemicals plus the excitatory catechols, substances found in green and black tea, coffee, chocolate, green coffee-bean extracts and quercetin. Do you think that tincures in alcohol (Herb Pharm) present a problem? Supplement with 500 mg (175 mg of ECGC) twice daily, Curcumin (Meriva is a common brand name) 1 to 4 g daily, dose divided, Chamomile tea (Apigenin, luteolin) 1 to 2 cups before bed, Diamine oxidase enzymes (DAO) 2 capsules with each meal, Vitamin C may need a non-citrus source such as rose hips 1 to 3 g daily, Silymarin 500-1000 mg daily, doses divided, Magnolia/Honokiol 200 to 250 mg twice daily, Parthenolide (Feverfew) 200 to 400 mg twice daily, Mangostin (often taken as a juice) 500 to 1000 mg daily, Xanthium (dihydroleucodeine, also known as cocklebur) 6 to 9 capsules daily, Isatis (indoline) 6 to 9 capsules daily, Found naturally in stinging nettle, grapefruits, onions, apples, black tea, leafy green vegetables and beans, Downregulates the enzyme that converts the protein histidine to histaminehistidine decarboxylase, Inhibits the release of histamine, prostaglandins and leukotrienes three of the most common inflammatory mediators found in MCAS, Decreases the production and release of inflammatory cytokinesthe inflammatory mediators responsible for many of the symptoms of inflammation related to MCAS, Often used as a primary therapyhas been shown to be more effective than the pharmaceutical Cromolyn, Treats allergies, contact dermatitis, photosensitivity and inflammation, The dihydrate form has the best bioavailability.