DoozlyGirl

Thanks Issie. I don't understand all the complexities of the science yet, but am finding references stating that NO levels are a trigger for mast cells. Anyone else?

For years, I've been aware that discussions on nitric oxide have circled DINET, but I admit I couldn't get past a biochemistry wall I had put up, so never made it my priority to learn all I can about it. As my brain fog has slowly cleared, I can see it's importance, so am now digging in. Last week, I had an opportunity to attend a wellness conference where Dr Nathan Bryan, PhD, spoke on nitric oxide deficiency and its effect on disease. He holds innate expertise on nitric oxide and has worked with two different teams who both have been awarded the Nobel Peace Prize while laying the scientific foundation for nitric oxide in chronic illness. Dr Bryan has spent the past 12 years on research to diagnose NO insufficiency and natural strategies to restore NO production. His bio looks impressive. I am not endorsing or recommending this product, but wanted to share what I learned at this conference through summarizing my notes. I have zero background or understanding of NO, beside what I have casually learned on DINET, so please be gentle. I hope our NO gurus will synthesize my notes and give us your thoughts. Dr Bryan stated emphatically that loss of NO production = disease, and he listed CV disease, HTN, thromboses, Alzheimers, Erectile Dysfunction, Peripheral Arterial Disease, immune dysfunction, cancer proliferation, diabetes, neurologic impairment, and many more. He stated that if there is impairment of endothelium (which is extremely common in chronicly ill), then NO can't be produced, and then this causes signaling issues and causes a chicken and egg scenario. Since NO is crucial for glucose clearance, he stated that they have proven that if you restore NO, than you can eliminate disorders, and he specifically mentioned Type 2 Diabetes. He cautioned that PPIs are the absolute worst thing for chronically ill patients, as the loss of stomach acid WILL disrupt NO production. He mentioned that L-arginine is a precurser to NO, but that if there is endothelial dysfunction, the broken pathway must be fixed first before the NO will be made. He mentioned that kale, swiss chard, arugula, and spinach all have high levels of NO, with kale leading the pack, and pommegranite juice, beet root juice, and red wine all raises NO in the body, as long as all the biochemical pathways are open. He has spent 7 years working on a supplement and recently his employer, UT Houston Medical School, has patented and leased this research to a company to manufacture Neo40 Daily, the first supplement to directly raise NO levels in the body. Since NO is gone within 1 sec on the body, they had to overcome many odds to find a delivery system to get this supplement to a cell that can start the chain reaction and deliver it where it needs to go. They stated this product is all natural, shows no intolerance, and provides drug-like results. In their trials, they have been able to make marked improvement in BP within 30 days and several patients have come off of 5-8 BP meds. He mentioned this supplement has ben shown to increase blood vessel diameter and increase circulation. He showed us thermography pictures of a man with severe Raynauds before and 30 minutes after one dose and there was am amazing change with marked visualization of fingers, not seen on pre-image. He showed heart images of a man with significant LV hypertrophy and how the NO supplementation decreased the heart size to normal within a year. He shared another case of a man with 213/88 BP in the ED, and within 30 minutes and one pill the BP went down to 188/85 and 30 minutes after another pill, the BP settled in at 140/80. They originally wanted to give this out to suspected MI patients in a clinical trial through the Houston EMS, but the FDA then wanted to call it a drug, as supplements can't cure, diagnose or treat illness, triggering that it needed to go through the current 10-15 year drug pathway to come to market. The company then decided to continue studying it this way and bring it to market as a supplement, since it was all natural, had no intolerance effects and had trials and scientific date to it up. He mentioned that Harvard Brigham and Women's has just released some research on it's efficiacy. Now here is the cool thing. They had a test which could determine your current NO levels on site. I just put a teststrip in my mouth for 15 seconds and compared the strip against the board. As easy as a urine dip or using pH strip. White or light pick meant non-existent NO, medium pink meant low and dark pink meant normal amounts of NO. Anyone ever heard of this test? Has anyone who is up on nitric oxide familiar with any of this? Is anyone taking this supplement? Here is the link to the product as well as published journals articles, book chapters and other references to support all this. http://www.neogenis....n-s-bryan-ph-d/ Would love to hear your thoughts on this. Thanks so much. Lyn

Issie, I'm not on ketotifien yet. I've had ot fight my insurance company and get my locl doc to step up for me to get Singulair this month. Just bought quercetin and plan to trial that this week. Lyn

Chaos, Allegra and Zyrtec blocks the H1 histamine recepter, Zantac and pepcid blocks the H2 recpetor. There are H3 and H4 receptors, but meds aren't available to block those two pathways, so those can lead to the pathway to produce prostaglandins and leukotrienes and the Singluair blocks leukotrienes, stopping the riptide from escalating deeper into anaphylaxis. Singluair is known to target chest tightness, breathing issues and asthma like reactions. I take Singulair every night and again when triggered by an inhalent like perfume, incense, gasoline, cigarette smoke, etc. I used to consistently anaphylaxis from any of those things, and now Singuair in addition to my emergency meds stops my reactions cold within minutes. Best wishes sorting out your triggers and meds, Lyn

Issie, I did notice a HUGE improvement when I went from H1/H2 twice a day (upon wakening and at bedtime with singulair at bedtime with H1/H2) and again with breakthrough symptoms. My local treating doc suggested taking my H1/H2 combo three times a day and within 2 days I felt normal at times, the first time in years I felt so well. I would still degranulate, but could head off the reactions quickly. This lasted nearly a month and I really thought I was gaining ground!! Then the weather changed and the mold count went through the roof, all during my last cycle. I didn't change my diet, my meds, my products, or my routine at all. I am finally climbing out of that flare. Lyn

Christy, I'm not sure if you saw this from the TMS website, scroll down form the front page. The FDA is allowing mast cell patients access to ketotifen through a the manufacturer in the UK. Lyn 13-AUG-2012 - Zaditen® (Ketotifen) Zaditen® (Ketotifen) With much anticipation we are happy to announce that with the diligence of Kelli Foster our FDA/NORD representative patients with mast cell disorders can now order Ketotifen directly from the manufacturer, please read highlights below and ways to order!!! BACKGROUND For the last nine+ months, I have been tirelessly working to identify a safe, reliable and consistent source of Zaditen® (Ketotifen) for my daughter and myself. We have found that Zaditen® helps manage our Mastocytosis and Mast Cell Activation Disorder (MCAD) symptoms. Zaditen® is not available in the US. The only alternative we found was to have it compounded at a pharmacy. Due to personal preferences and concerns, I continued my investigation into procuring the brand name Zaditen® medication and expanded my search internationally. After a number of phone calls and emails between Novartis, Food and Drug Administration (FDA), and various international pharmaceutical companies, I was finally able to trace who "owned" Zaditen® (Ketotifen). HIGHLIGHTS Novartis transferred the license for Zaditen® (Ketotifen) Tablets 1mg and Elixir 1 mg/5 ml to Defiante Farmaceutica, S.A. (Defiante) in 2010. Since 2010 Defiante Farmaceutica, S.A. holds the authorization to commercialize Zaditen® (Ketotifen) Tablets 1mg and Elixir 1 mg/5 ml in the United Kingdom (UK). For commercial and logistic issues, Defiante Farmaceutica, S.A. signed a distribution agreement with Swedish Orphan Biovitrum Ltd. (SOBI). In general, the distribution agreement states that Defiante supplies SOBI with Zaditen® and SOBI handles medication storage, supply, marketing and distribution activities within the UK. Zaditen® (Ketotifen) 1mg tablets are manufactured with exactly the same quality, safety and efficacy profile as the Novartis supplied product. Defiante maintained the same composition, manufacturing method and specifications as Novartis. The FDA has been very supportive and has guided me through the procedures that should be followed regarding the Personal Use Importation Policy of unavailable medications for patients under the care of a physician. Please keep in mind that the FDA does not promote the use of these products for off-label use but do understand that there are circumstances when a physician may believe under the practice of medicine that the products could be of benefit in certain patients. Nor does the FDA promote the use of a medication unapproved in the U.S. as this would be. After many conversations with the FDA and because of the newly formed relationships between Defiante, SOBI and Masters Pharmaceuticals Ltd (a global specialty healthcare company with a heritage of over 25 years working with Manufacturers, Hospitals, Pharmacists, Governments and individual patients with the singular objective of 'Improving lives through patient access') brand name Zaditen® (Ketotifen) is available for Mastocytosis and Mast Cell Activation Disorder patients with a valid prescription through Personal Use Importation. HOW TO ORDER Secure a signed prescription for brand name Zaditen® (Ketotifen) from your physician. Contact Julie at Masters Pharmaceuticals Ltd (1-800-969-1152) for product and shipping costs. Fax the signed prescription for Zaditen® 1mg tablets to Masters Pharmaceuticals Ltd (1-800-969-1153 - Attention: Julie). Provide appropriate payment (i.e. credit card, etc...) for prescription order. WHAT TO EXPECT Once Masters Pharmaceuticals Ltd has received your prescription and payment, they will prepare your prescription for International shipping. NOTE: All international medication shipments are subject to the FDA Personal Use Importation Policy (see attachment) and US Customs Inspections. You should receive your three (3) month supply of brand name Zaditen® within approximately 10 business days. The brand name Zaditen® (medication manufactured by Defiante Farmaceutica, S.A. distributed by Swedish Orphan Biovitrum Ltd. (SOBI)) Submitted By: TMS Webmaster | 13-AUG-2012 | Take me back to the top

Issie, I'm on H1/H2 combo 3 times a day and take Singulair. Lyn

Misstraci, I've found that I can only tolerate OTC and prescription meds without dyes, sulfites, and flavorings. I highly suggest avoiding those as they are known degranulators. Generics tend to have the cheaper ingredients, so folks often tolerate the brand and not the genrics. H1 - Zyrtec, Allegra, and Claritin . Zyrtec works faster than allegra, but allegra lasts longer. Claritin is a good first step drug, since it holds weakest actions. Liquid and readi tab formulations are filled with dyes, flavorings, aspartame, and other known degranulators. Liquid gel Zyrtec that works well for me as a breakthrough H1. Hydroxyzine is the parent of zyrtec, is available through prescription in the US and crosses the BBB, so is well known to help with cognitive issues. H2 - Zantac and Pepcid are recommended over Tagamet, since Tagamet inhibits DAO, which is essential to breaking down histamine, as well as has many known drug interactions with many of the meds a mast cell may take. Zantac is considered the stronger H2, so many with sensitivity to drugs will start out on Pepcid, then may switch to Zantac later. Emergency - Benedryl is a great emergency med, as it in not only a H1, but also anti emetic, (GI issues), decent sleep med, and holds other properties. It is not generally recommended to take Benedryl on a daily basis, as it is common to gain tolerance to meds, expecially antihistamines, and there is really nothing better to abort various mechansims leading to anaphylaxis. Dye free liquid gel Benedryl and walgreens dye free liquid gel diphenhydramine both contain the same inactive ingredients and I tolerate both. I have yet to find a generic zyrtec and zantac without the known degranulatrs, which trigger anaphylaxis in me. The mast cell experts have shared that it is best to take a H1 at the same time as a H2 to stop both cascades once histamine is released. The rest depends on trial and error and how well you tolerate each of those meds. It is wise ot only make one change in your meds at a time and hold that pattern for a few days, so you can tell if you tolerate that med or not. Best wishes in sorting out your meds, Lyn

Batik, I take Benedryl for reactions that I can't control with zyrtec, zantac, and Singulair. I do find that my worst symtoms are the day before/on my period, tapering after 2-3 days, then again to a leser degree during ovulation. My symptoms keep me horizontal, as the flushing, sweats, GI shutdown, raging headache, and severe OH and syncope are at their worst. Before learning of mast cell, I would just sleep it off, trying to keep hydrated. since learning of mast cell, I have begun to take Benedryl when I am at my worst. For multiple times over the past several months, I have found that my period stops while on the Benedryl, then several days later I will start spotting and if those above symptoms are tolerable, then my period will be slow and steady. If my symtoms rage for a few days and I take more Benedryl, my perioid will stop again. Dr Afrin has no idea why this happens but is open to Benedryl affecting menstruation. Since asrin therapy in MCAs is used to slowly leak out the prostaglandins instead of allowing a massive release of prostaglandins, I wonder if the Benedryl does the same thing: slowly releasing mediators that can direct menstruation. I didn't notice as much change while on other H1s but it was obvious with the Benedryl. I am 45 years old and wondering if my current periods are actually enhanced from degranulation, as I have elevated heparin levels. Lyn

Hoosier, Thanks for the explanation of your detox profile. Issie, Thanks for your concise synopsis. We have some of the same types of issues. I have highlighted my +/+ (complete) defects in red and my +/- or -/+ (partial) defects in orange and suspected defects in blue. COMT and MAO-A processes neurotransmitter catabolism and estrogens CBS processes hemocysteine and if upregulated depletes methyl groups, increases taurine MTR/MTRR recycles B12 and processes B12 for methionine production GSTM1 and SOD major detoxification enzymes GAD transforms glutamate to GABA HNMT process histamine (secondary enzyme for histamine primary is DAO) QDPR recycles BH4 NOS processes ammonia forms nitric oxide from arginine SUOX processes sulfites/sulfur and this mutation is made worse from CBS upreg VDR - Processes Vit D SHMT - Synthesis of methionine I read somewhere that CBS mutations lead to issues with sulfites and ammonia and can cause low doparmine, low serotonin, cardiovascular risks and multiple chemical sensitivity. Have you looked at your CYC450 genes? I got the list from Dana's awesome spreadsheet from the third tab at the bottom. http://danachronicallyliving.blogspot.com/2012/05/determining-your-yasko-methylation.html I have 3 different +/+ defects and -/+ or +/- defects in this batch. I just know that these defects are contributing to my ongoing issues and won't get better until I do something about them. Lyn

Hi Rachel, Welcome back to DINET. Jangle gave an awesome synopsis on the POTS theories, which is a good place to start. Keep reading and feel free to ask questions and in no time you'll be throwing around all sorts of medical jargon. I still remember how lost I was during my first few weeks. Collectively, DINET is made up of a dynamic, intelligent, persistent and wise members who come together to help each other make prgress in dealing with our awful circumstances and share in our silver-lining blessings. You are wise to be seeking the 'cause' of your illness. I recently learned the 'cause' of my dysautonomia, which has given me new treatment options, hope and most importantly, relief in symptoms. During my TTT, I didn't pass out, but my BP dropped 38 beats, giving me the diagnosis of orthostatic hypotension (OH) and further autonomic testing showed I have autonomic neuropathy of the sudomotor and cardiovascular systems, which means my body can't regulate my body temperature or blood pressure, then my heart rate raises to try to make up for plummeting BP. I spent my first 6 months bedridden, trying new meds, and getting worse before we stopped with the meds and let my body unravel on it's own. Slowly, I learned how to listen to what my body was telling me, an invaluable lessen in connecting the dots. This revelation guided me in unraveling my constant daily symptoms and actually being to see my flares/reactions start and stop. Along the way, I was diagnosed with MCAS, mast cell activation syndrome, a defect in the immune system which is beginning to be recognized as a significant "cause" of POTS and other forms of autonomic dysfunction. My misbehavin' mast cells are trigger happy and are set off by things most people can tolerate: foods, food dyes, additives, fragrances, change in weather, inactive ingredients in medications, personal care products, gasoline, and other chemicals, pressure, hot, cold, contrast media, and a host of other triggers. Mast cells are located in every organ in the body, most prominent in the interfaces with the environment, such as the sinuses, nasal passages, GI system down through the tummy, and out the back end. Mast cells are also in the bladder, uterus, lungs and other organs. Mast cells are responsible for triggering asthma attacks, hayfever symptoms, bladder pain a la interstitial cystitis. skin rashes, hives, anaphylaxis etc. When misbahavin' mast cells are activated, they degranulate and dump a few or hundreds of chemicals into the body, leading to all sorts of havoc. These chemicals are responsible for many, if not all of the symptoms I face. Mast cells degranulate and releases histamine, which increases the permeability of my blood vessel walls, and leads to a cascade of other chemicals being released. One of my worst symtoms is my plummeting BP, where due to the histamine release, the liquid part of plasma escapes out of my circulation and leaks into my tissues, causing flushing and this loss of blood volume leads to OH symptoms in me and POTS symptoms in others. If you flush, have reactions or sensitivities to all sorts of meds, foods, perfumes, etc, then consider looking into mast cell issues. As you post more, others will chime in and guide you along your journey. Your sense of humor will take you far in dealing with all this. I look forward to learning more about your journey with dysautonomia. Until then, best wishes in connecting the dots. Lyn

Hoosierfan, Can you share with us more about your detoxification profile? Was it done through their office or was it a send out to Great Smokies Lab or whatever they are now called? Did it tell which genes and enzymes are impacted? I am trying to learn more about the detoxification process. I'be had my genes profiled and wonder which ones are related to breaking down estrogen. I have used prescribed progesterone cream (bioidentical cream) with great success in diminishing my excess bleeding, once we got the doseage correct, to counterbalance my severe estrogen dominence. Thanks, Lyn

Chaos, My pleasure. I see we both have autonomic neuropathy and many of the same diagnoses. My autonomic neurologist suspects that my significant OH and plummeting BP likely triggers my sugars to become unstable. And my mast cell specialist believes my mast cells are responsible for my unstable BP AND the unstable sugars. I do find that I have far less issues when my mast cells are happy. Taking my mast cell meds three times a day has really helped limit those drops. Also, I learned it is likely that your blood sugar levels drop, and by the time you test with your home kit, your pancreas has cranked out more insulin to raise your sugars. The CGMS really helped me identify when my sugars were low and now I know to treat them before I end up in the swinging phase. Best wishes, Lyn

hippychick, I used to get that feeling alot. I spent months tracking down my labile blood sugar issues with the help of two endocrinolgists. We figured out I do not have true hypoglycemia, which means my levels don't drop below 60. But I do have unstable sugars in that they can plummet very quickly, especially after eating. This is called reactive (or post pranial) hypoglycemia. While eating protein with every meal and snack helps, and through the help of a diabetic educator and dietician, I was able to sort out steps to help mitigate my fluctuating sugars, and most importantly figure out how to stop the bouncing around (sugars are very reactionary and can bounce up and down when out of control). Even with home blood sugar testing, I missed many of these surges or drops, but we caught them with continuous glucose monitoring. On a side note, was advised to carry those sugar tablets or candy and take one when I felt my suagars low, but they made me feel horrible. I later realized they contain artificial dyes and artifial sweetners, which triger my MCAS symptoms. I now carry sugar packets and a granola bar with protein to use when I feel my sugars become unstable while away from home. The sugar is to boost blood sugars out of my low and the protein is to lessen the swinging and keep a level release of insulin. This has been working for me. Best wishes, Lyn

Rich Van Konynenburg, CFS/ME advocate and resident expert on methylation related issues, died unexpectently yesterday. He frequently shared his vast understanding and findings on multiple health websites to help many with chronic health issues. Here is a tribute to him and his work on Phoenix Rising. http://phoenixrising.me/

Maia, There are several lists of degranulators out there. I started with www.TMSforacure.org, (under the TMS emergency protocol), www.mastokids.org and Mastopedia. Degranulating meds alpha and beta blockers, NSAIDS, opioids (codeine, demerol, morphine etc), esther local anesthetics, amphoteracin, polymyxin B, and vancomycin antibiotics, atracurium, rocuronium, or succinylcholine muscle relaxants, ethanol or alcohol products (including polyethylen glycol or other products ending in ol) dextran dextromethorphan quinine sulfa drugs (bactrim, septra, immitrex, and other sulfa meds) penicillin radioiodine contrast media cholinergic receptor agonists atropine Preservatives and additives metabisulfites, sulfites methylparabens Azo dyes (FD&C numbered dyes, FD&C yellow 5, FD&C red 40, etc.) compound 48/80 benzoate benzoic acid Best wishes, Lyn

Sorting out and finally understanding (at least in part) the underlying biochemical mechanism that episodically holds my autonomic nervious system hostage has been the number one reason I have made progress. Before I connected my odd reactions to meds, food and environmental triggers to episodes of hypovolemia and subsequent syncope/presyncope and tachycardia/plummeting BP, I was a huge mess. It wasn't until I began to avoid the things that made me react, that I could unravel my ongoing symptoms. Now I have days where my episodes start and stop and in between I am symptom free. None of the typical treatments for dysautonomia helped me before, but now that I have layered in those concepts with my current MCAS tretaments, I can abort the episodes. And knowing the meds, preservatives and drug additives that are known to cause degraulation has connected many dots for me. I can now avoid many things I react to, and am on my way to living a semi-normal life. Best wishes in sorting out your underlying biochemical defects. Lyn

Wanted to share that there is a new non-profit organization and website on Dysautonomia. Here is the link, if you want to check it out. http://dysautonomiainternational.org/index.php

This is all so very interesting to me. I have an elevated TNF at 15X upper level or normal which was drawn during my MCAS workup. There are a few of us that have had TNF drawn by our various mast cell specialists or immunolgists who are pretty versed in mast cell disorders. I also have autonomic neuropathy of both my CV and sudomotor systems, and this is a pretty decent and convincing angle for me to link the two disorders, as most of the MCAS patients out there have POTS. Not sure if any of you saw this, but as I have been trying to link the massive inflammation back to my current issues, I ran across this link on GMO (genetically modified foods ) in the US food supply. It is a pretty compelling movie, and horrifying to see what we are eating here. http://articles.mercola.com/sites/articles/archive/2012/09/15/genetic-roulette-gmo-documentary.aspx Thanks for sharing, Rama. Lyn

MUST SEE MOVIE on GMOs in our nation's food supply! http://articles.mercola.com/sites/articles/archive/2012/09/15/genetic-roulette-gmo-documentary.aspx This movie is just starting to hit other health forums and facebook. Is it possible that your own illnesses are worse because of GMOs in our food? I know mine are, as my first diagnosis was IBS in late 1996, the year GMOs in corn was first introduced in the US food supply. Please share this link to as many people as you can, especially to friends and family in California. November 6 is a referendum on Proposition 37 that would force companies to label any product that contains GMO. Lyn

Tryptase is one of over 200 hundred known mediators that are released when a mast cell degranulates. There are a handful of other mediators that can be tested, including histamine, prostaglandins, N-Methylhistamine, heparin, and a few others. Mast cell activation is confirmed when elevated mediators are found, the patient has symptoms that signify mast cell activation, and typical treatments, ie antihistamines bring relief. Mastocytosis and MCAS (mast cell activation syndrome) both involve inapproapriate mast cell activation. MCAS is due to misbehavin' mast cells where mastocytosis is due to too many mast cells. The tryptase is a well known way to estimate the mast cell burden, ie number of mast cells. Patients with elevated tryptase are usually referred for a bone marrow biopsy to confirm mastocytosis. Patients with tryptases levels below that cutoff (20), are then tested to look for laboratory proof for MCAS. It is common for foods to trigger mast cell activation. Food allergies can cause either immediate IgE reactions or delayed reactions, which are not IgE mediated, but likely mediated through IgG or other pathways. The properties within foods can be the issue, such as histamine, salicylate, sulfa content, etc. I recently read an article on medline, stating that patients who start GF diets will impact the results. If I recall this correctly, the study came out of Mayo, one of the top GI hospitals in the country. The gold standard for celiac is a biopsy. Blood tests are often not accurate, as false negatives are higher than wanted. A negative work up for celiac could be negative and not indicate gluten intolerance. Onec your allergy testing is done, you may want to go through an elimination diet to figure out what you react to. It would be wise to avoid GMO and eat as clean as possible. Learn how to trust what your body is telling you. Good luck on sorting this all out. Lyn

Bren, Congratulations on finding a physician who is helping you connect the dots. Impressive that your immunologist not only knows about MCAS, but also EDS. There is compelling evidence that autonomic dysfunction and EDS/connective tissue disorders are related to Mast cell activation. I've only just begun to look into EDS, myself, but it is called Ehlers-Danlos Syndrome. Here is a forum for that community, and you'll recognize several people from here and the MCD forum on that site. Type 3 refers to the hypermobile version, which is the classic version. My family has vascular symptoms, and I suspect we have the vascular version, known as VEDS. http://www.inspire.com/groups/ehlers-danlos-national-foundation/ Ketotifen tablets are not FDA approved or available in the USA through your pharmacy, but there are different channels to got it with a physician script. One way is by following the instruction on the front page of the TMS website. My physicians want me to max out my antihistamines before adding in a stabilizer. I see you are only taking 10 mg loratidine. Loratidine, is less potent then zyrtec or hydroxyzine, and many need to take their H1 at least 2, more like 3 times a day. I wonder if you are taking your 300 mg ranitidine in two doses? I have read in several places that it is important to take a H1 and H2 at the same time in a combo, especially when you have breakthrough symptoms. Best wishes in connecting even more of your dots. Lyn

Dr Chelimsky is a consulting autonomic neurolgist, meaning he is not mearly taking over for Dr J or Dr B's patients. You may need an outside referral to see him, from someone outside of the department. If you are looking to head into Chicago Dr B set up shop at Rush. I just heard that the Medical College of Wisconsin/Froedtert Hospital is looking to hire one, possibly two new autonomic neurologists. Lyn

Ana, Your story is certainly remarkable and your diligence and attention to detail obviously helped you find your way, which in itself is another bullet point: You learned how to listen to your body, then learned how to trust what your body is saying to you. As Ana's story illustrates, she eliminated the barrage of chemicals insulting her organs, gave her body what it needed and was patient to not give it too much (used supplements, vitamins, meds sparingly then tapered when necessary), recognized the importance of sleep, diet and excercise, and began to literally spoon-feed her body the basic building blocks to reset her body chemistry. Her prize is her success proven by getting out of bed/wheelchair and hiking up to 3 hours these days. Congratulations!! Many of us with MCAS and/or MCS are living examples of how our immune system can become uber sensitive to the products of this era. Consider us to be "canaries in the coalmine". Do NOT under-estimate the effect of your environment on your current condition. Don't let anyone (not even your physicians) try to convince you that the fragrences, preservatives, dyes, artificial sweetners, toxins, viruses, allergens, inactive ingredients in meds, and loads of other chemicals can't do harm. Mast cell patients are walking proof of this assault on humanity. But Ana's journey is proof that while it may be overwhelming and take a long time, it can be done. Thanks for showing us one can control their environment and repair some of the damage that put us in this position in the first place. Bravo !! Lyn

Sheila, I see no one has replied yet. Did you also have an echo in addition to the monitor? I've never heard of a echo PVC unless they are just describing PVCs seen during an echo. Rare PVCs are very common. PVCs become more alarming when there are runs of them. Lyn