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. Dr. Michael Ruscio:Hey, everyone. All of these pages are at the 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. Comprehensive information about mast cell disorder. Has anyone come up with a list of Mast Cell Activation Disease Specialists in Functional Medicine for the United States yet in a Directory Form? Histamine 2 blockers Famotidine (Pepcid, Pepcid AC), Cimetidine (Tagamet, Tagamet HB) and Ranitidine (Zantac). Hello! Withaferin A is a compound found in ashwagandha that has been shown to prevent mast cells from releasing histamine and other inflammatory mediators, Vitamin D usually best at higher doses. For more information on Dr. Afrin or to read his latest blog posts on Mast Cell Activation Disorder, please visit, Need help or would like to learn more? I kept reading it . None. So youve got famotidine, whose most popular trade name is Pepcid. Although, its the case that most mast cell patients arent going to reach optimal improvement with one medication. I actually did also publish a formal, sort of academic type chapter on this. Do ones best to avoid them. Calming the immune system and reducing inflammation is a critical part of any MCAS protocol. DrMR: So its fair to say that youre both participating in this area from a clinician perspective, treating patients, and youre also performing research. Ditch it. And lots of people forget about the other one. And now, all of a sudden, there comes a disease which by its essential biologic nature is actually capable of presenting a thousand different ways. I am guessing that this on this page is actually an ERROR??? 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. DrLA: Sure. DrLA: No, not quite the same thing. And so, to the point of time, Im curious about time and dose. Bone marrow biopsies very commonly are diagnostic in that rare disease of mastocytosis. DrLA: Whereas, above the waterline, youve got the various allergic-type phenomena and then the rare disease of mastocytosis. Doses listed are taken directly from "Presentation, diagnosis and management of mast cell activation syndrome" by Lawrence B. Afrin. I have more information, organized on this page, that discusses MCAS. I ordered this book as soon as it was released, and it really helped me understand MCAS a lot better. Benzodiazepenes Addresses the inhibitory mast cell benzodiazepine receptors. Selective Serotonin Reuptake Inhibitors may occasionally be of benefit. Stimulants Mixed salts amphetamine (Adderall XR), Methylphenidate (Ritalin) and Ephedrine (Epipen provides an acute rescue injection when experiencing an anaphylactic episode). Distinct from mastocytosis and simple allergy and characterized by constitutive mast cell (MC) activation and aberrant MC reactivity with little to no excessive MC accumulation, MC activation syndrome (MCAS) presents as acute-on-chronic multisystem polymorbidity of generally inflammatory allergic theme and may be epidemically prevalent (PLoS ONE 2013;8(9):e76241). 4 0 obj Keep your gut in balance by choosing the right supplements for your gut microbiome. And Im getting the inkling that the medications here may be more of the brunt of the argument. Ive not found that approach to be particularly productive. Thats a minority of patients, but people can start once theyre diagnosed. Also known to have hepatoprotective, anti-carcinogenic and anti-inflammatory effects. Other supplements that have been used in MCAS: Both quercetin and green tea extracts may inhibit the COMT enzyme. I hope you will find someone who will help you better understand MCAS with you, but we are always available to you here if you ever need. Prior to your appointment you will be asked to fill out some forms and send all of your blood work and reports. Great. Why would you want to be on suboptimal therapy for the next two, three, four decades? This can lead to widespread symptoms in many different body organs and systems. 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. And theres a NasalCrom thats actually over-the-counter. So I absolutely appreciate your thinking here. And there are certain reasons why it might be a little more useful to measure N-methylhistamine instead of histamine in the urine. And then, you have much less symptoms present, and that may give you a more definitive window that can get you to that diagnosis. So I counsel my patients, patience, persistence, a methodical approach, trying to make just one change in the regimen at a time. Although there is a good possibility that you will eventually find the right therapeutic combination of treatments that will help alleviate many of your symptoms, the fact is that there are no specific biomarkers that will predict which therapy will be the most effective for your specific manifestation of this condition. DrMR: And what are those markers? Dr. and Ms. Sackler died in 2017 and 2019, respectively. Thats about it that we can measure at present in the clinical laboratory and which are relatively specific to the mast cell. MCAS is often found in individuals with hypermobility syndromes (EhlersDanlos syndrome), postural orthostatic hypotension (POTS) as well as chronic inflammatory response syndrome (CIRS) and tick-borne illnesses (Lyme disease and co-infections). A low histamine diet, as you alluded to earlier, certainly can be helpful. The higher dose or frequency is not going to be the answer for you. Theyre getting excessively activated when histamine docks with those cells. Coming back just to that for a moment, the dosing. One of the best things you can do for MCAS is add natural treatments that stabilise your mast cells. His protocol as completely changed my life, and I'm finally starting to get my life back. And theres nebulized cromolyn, and that, like the oral cromolyn, is prescription-only. Well, I think you and your listeners would appreciate in terms of natural therapies that step one in treating mast cell activation syndrome that Ive seen prove most productive actually is no medication at all. Z=_N`P38_/r5gg.Q }4@SYUE.Cp)\|"L5?7b0{V*?v5oN4?5 5_Op%~^oh? If you need a comprehensive overview MCAS, I encourage you to read my article:Mast Cell Activation Syndrome and Histamine: When Your Immune System Runs Rampant. I think theres definitely a subset of patients that dont respond to some of the therapies that were doing in complementary and alternative or integrative medicine. And I think much of our audience may have heard of some natural treatments. This article contains scientific references. Your thoughts? MCAS is a type of mast cell activation disorder (MCAD) characterised by an abnormal activation of mast cells resulting in chronic multisystem polymorbidity of a general inflammatory nature, with or without an allergic nature. No product order inquiries. For a long time, many people with MCAS have been told that their condition was psychosomatic or in their head. Reduced blood pressure, collapsing, incontinence (lack of bladder control) 4. Then went on faculty there for nearly 20 years. Gently put a saline gel (Ayr), antibiotic ointment (Neosporin) or petroleum jelly (Vaseline) on the inside of the nose. I want to try your natural remedies. 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 for your time. I have recently returned from a most stimulating conference/think tank with Dr. Afrin and 30 other leading clinicians on Mast Cell Activation Syndrome (MCAS) at Commonweala cancer retreat centre in northern California. And you also cone the list down based on the mediators that are relatively specific to the mast cell. And can you define for us what mast cell activation disorder is? 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. You mentioned in the musculoskeletal system a lot of pain, diffusely migratory pain. Here is some further information about select products that are used most often. I just wanted to thank the two sponsors that help to make this podcast possible: Anthony Gustins two companies, Equip FoodsandPerfect Keto. Theoharides' lecture on mast cell . I have had hayfever as a child. Inhibits mast cell production of inflammatory mediator leukotriene C4. So step one: identify the triggers. And given how sick theyve typically been in how many different ways for how long theyve been sick, most patients are actually pretty happy to achieve that goal. DrMR: Gotcha. CBD is more helpful than THC. One of the nice things about treating thisI mentioned before there are a lot of drugs to be tried. So thats right: the mast cells produce histamine. It hasnt yet been verified, sort of independently confirmed by other institutions, and theres just a whole lot more research that needs to be done to better understand the cause. DrLA: But that is measurable at some reference laboratories and also as a marker of mast cell activation. Now, regarding testing, I think sometimes we fall into a pattern of over-testing and we test things that we dont even have a way of treating. Histamine is a natural part of us. With MCAS, this function becomes upregulated and chronic, occurring at inappropriate times in response to substances that are not necessary a threat. Theres some literature, obviously not formal academic literature, but theres some information about this out on various patient self-help groups. DrLA: Yeah. And so, Im assuming to the question of what causes mast cell activation syndrome, Im assuming that early life factors that are responsible for immune system programming are fairly important. Be sure to eat a low histaminic diet if MCAS is a problem. And quite often, its recommended to undergo what we call bilateral bone marrow biopsies, one on each side of the backside of the hip. Most popular trade name is Tagamet. Are there some other medications? Youve got cimetidine. But like I said, it only takes about a month with each therapy. I was basically a case for care takers vor 3 months, one of which I spent in hospital after being brought to the ER 3 times in one week. But for the most part, I tend to proceed in order of cost. Im just saying that overall, when mast cell patients have reactions to medication products, its a bit more likely that its an excipient reaction rather than a true drug reaction. Lawrence B. Afrin Division of Hematology/Oncology, Medical University of South Carolina, South Carolina, US ABSTRACT First recognized in 1991 and finally termed such in 2007,"mast cell activation syndrome"(MCAS)isalarge,likely quiteprevalentcollection ofillnessesresultingfrom MCs which have been inappropriately activated but which, in . Antibody neutralisers Omalizumab (Xolair). Again, think of the iceberg, and the bulk of the iceberg below that waterline of easy clinical recognizability is what were terming collectively mast cell activation syndrome. DrLA: I think there are a lot of different ways to approach this very nebulous beast. And the picture sometimes becomes more focused at that point. That doesnt say, of course, that every system will be affected by the disease. But its turning out in mast cell activation syndrome, tryptase is usually normal. But because the disease presents so differently from one patient to the next and even can vary a good bit in its behavior within the same patient from one point in time to the next, its really difficult to say that, oh, its just this one or these two mediators that you can get away with testing. So youve got Claritin. So all four of the commonly available non-sedating H1 blockers in the US are all available over-the-counter. Thank you for your interest in our diet guide. But lets be careful too, because if you find that Claritin at 10 mg twice a day is helpful and you want to try, say, 20 mg twice a day or 10 mg three times a day, nothing wrong with trying that. And there also may or may not be assorted abnormalities of growth and development in, well, potentially any tissue really. Youve got ranitidine, most popular trade name is Zantac. And Im very curious in a little bit to get your perspective on the guts impact. And then the genitourinary tract is another environmental interface. Need to test blood levels, Nightshades, including tomatoes and potatoes. We are still hopeful. And then, the rest of the visible part of the iceberg are much more common forms of what, in truth, is mast cell disease, just not commonly thought of that way. Cannabinoids Drobaninol downregulates neurons and mast cells via inhibitory cell-surface cannabinoid receptors (not available in Canada). Its a lot murkier at that point. And you can right off the bat see the challenges in just recognizing in the first place the possibility that this might be at the root of whats been going on in the patient. Hi Marilyn, We learn, all in all, probably a few thousand diseases. You just usually dont see anything helpful. DrMR: Theyre diagnoses of the symptom but not of the cause per se? So theres the integument. DrLA: Actually, the dosing is pretty close to normal. And we learn the specific patterns with which each disease presents. In others, symptoms may develop from a young age and slowly become worse over time. So there is required an awful lot of patience and persistence and a very methodical approach in stepping through trials of the different therapies. Testing for MCAS is somewhat complex and confusing, as positive biomarkers may only be observed when a patient has a flare up. Definitely check them out. How would I get my hands on that? histamine, prostaglandins, leukotrienes, cytokines and chemokines). Mast cells are white blood cells that are concentrated at the entrances to body tissues (ears, ears, nose throat, skin, genitalia, rectum), and when activated, they release over 200 signalling chemicals (e.g. But obviously, when I can help other professionals learn about this, thats an even greater thing simply because of the multiplier effect. A low FODMAP diet has shown the ability to cause an eight-fold decrease in histamine. But actually, even before I get into the testing, I just want to loop back to a brief comment you mentioned in that question about the treatments. However, two different drugs of the same type can effect patients very differently. Full disclosure, you have to be a little careful when interpreting chromogranin A levels. I have recently returned from a most stimulating conference/think tank with Dr. Afrin and 30 other leading clinicians on Mast Cell Activation Syndrome (MCAS) at Commonweala cancer retreat centre in northern California.MCAS is a type of mast cell activation disorder (MCAD) characterised by an abnorm. Therere going to continue to be ups and downs with the disease. Please do not apply any of this information without first speaking with your doctor. But youre right. 3. Those drugs are the keepers. in computer science at Clemson University in 1984 and then an M.D. He has one of the cleanest line of protein powders and pre- and post-workout powders that I think really is around. The first part of the title is Never Bet Against Occam. My chapter is freely available for those that want to sort of get into more academic type reading in a long chapter. This article is based on scientific evidence, written by experts and fact checked by experts. And I hadnt figured out a shorter way to describe it yet. Gosh, its a lot of information and a lot of time for 15-20, 30 bucks. Theres nizatidine, and its usual trade name is Axid. These recommendations were presented at the think tank by Dr. Brian Bouch, a leading integrative medical doctor from California. -AR\>'z2-Sfx'z:5{9,vP}\myZz"(bx[7jdYHYMJ8M4g#cY3]}l4S Tu3ja\'[#2YYyp~{fwkUihrEsUBl&[M9hHIZJt,/p$?lFElo%CNys+rGEU/FxwDOqNO43=8A=P]B\/v+.=2J}Ab>8GF Take care, Jeri Allen-French, many thanks for these precious informations and for sharing with us your huge holistic knowledge. You can see the blog post here. But if youre talking specific mast cell mediators, the ones I typically look at are in the serum: tryptase and chromogranin A. View Dr. Ruscios, DC additional resources. Everything else, we dump and we move on. Of course, youve got the sedating H1 blockers. 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. Dr. Afrin is a clinical practitioner and researcher of MCAD and MCAS, Distinguishing histamine intolerance versus MCAD, Episode Intro 00:00:39Mast Cell Activation Disorder (MCAD) 00:02:51Mast Cell Activation Syndrome (MCAS) 00:05:47Common Symptoms & Systems Affected by MCAS 00:08:49Effects on the Immune System 00:13:23Moving Forward with a Proper Diagnosis 00:15:21MCAS and Histamine Intolerance 00:19:05Factors That May Lead to MCAS 00:24:15Relevant Testing and Treatments for MCAS 00:27:44Specific Markers for Mast Cell Disease 00:34:40Finding Reliable Labs for Testing 00:38:13Natural vs. Do you have those available? 2. When you talk about histamine intolerance, why would one be intolerant to histamine? I have been disabled by this condition and have not been able to work for years now- I need help but the reports I hear back from other patients of your clinic clearly indicate that care there is out of reach for me fiscally. And then, if you want to do additional tweaking in terms of tweaking the dose or tweaking the frequency, nothing wrong with taking the time to run those experiments. patrick mahomes bodyguard, child psychologist wellington, cheq lifestyle technology,