DoozlyGirl

Found these on the CDC website. List of ingredients in vaccines. Check out the influenza vaccines from 2011. Egg protein is the least of my issues. I have documented reactions to several of the antibiotics, as well as MSG and preservatives used. Maybe you do too? And who wants formeldeyde injected in them? There are quite a few mast cell degranulators in here as well, in case that could be your justification. http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/B/excipient-table-2.pdf Basic information here. http://www.cdc.gov/vaccines/parents/vaccine-decision/ingredients.html Lyn

I, too, have an egg allergy (low grade as it is) and was exempt to opt out of getting my flu shot for several years. My allergist agreed to not get Flu shot due to my non patient desk job. Flu shots are incubated in chicken eggs and pick up the proteins from the shells. There is a nasal spray, which I believe has thimerisol or some other preservative, as wel as MSG in it. I got out of both types of flu shots. I then got my allegist to write a note to get me out of the mandatory TB screening shots (worked in office with NO patient contact) due to my longterm history of drug reactions. The next year they stopped making it mandatory annual testing and now only test if in contact with known TB patient. I hear you on the mercury! I will take other vaccines, I just don't like the vaccine schedule today compared with 25 years ago. Way too many vaccines given at one time, all packaged with multiple preservatives, antibiotics, and other stuff. Many don't even know they can ask for any meds, including vaccines, from a single dose vial, free of preservatives!!! Lyn

Christy, I recall reading a bunch of Joan's posts on the MCD forum on a really slow tapering protocol for gastrocrom. I know of several who have tried it and abut to give up until they tried Joan's tricks. Good Luck, Lyn

Hi Claire, Beta blockers are known mast cell degranulators, which mean they trigger the mast cell to release histamine, and sets up the anaphylactic cascade. In addition to diminishing the effect of epi during an anphylactic reaction, beta blockers alter the body's inate ability keep anaphylactic reactions from going to the next phase. In your case, I fear it would be risky to take a betablocker. I have a history of anaphylaxis, long before being diagnosed with autonomic neuropathy, OH and MCAS. Soon after my TTT, I was prescribed zabeta. I started with 1/4 of a pill and by the 4th day (and only one pill) my resting tachycardia presented with a constant HR in the 40s. I lived this way for 6 weeks until it crawled up on its own. He then opted for a calcium channel blocker, but then I couldn't tolerate verapamil. My neurologist told me to never allow anyone to prescribe a betablocker ever again, but we didn't exactly know why I reacted this way, until I got the MCAS diagnosis. The verapamil contained yellow dye, another degranulator, and major trigger of my anaphylaxis. Best wishes, Lyn

Hi Dizzy, I've got a few thoughts for you to consider. Before you write off the Vistaril, which is hydroxyzine, know that this is the parent of drug of Cetirizine (Zyrtec) and it crosses the blood brain barrier, giving the sedative effects, meaning the mechanism of the drug is supposed to give a sedative effect. It is a known effect and so you may want to consider asking if you can cut back on your starting dose. My doc started me on 10 mg tablets, so maybe the 25 mg is just way too much for you. Didn't know that the Wal-zyr comes in 5 mg. Zyrtec and other generics come in 10 mg. The energy boost could also come from the cetirizine. I am currently taking zyrtec 10 mg 2x/day and taking hydroxyzine 20 at night. Both zyrtec aqnd hydroxyzine are H1s. It is best to know if you tolerate the H1 before adding the H2. Note that it is best to not increase doses and add a new med at the same time. If memory serves me right, the Walgreens Zantac has red 40, is that correct? I do best with dye free Benedryl or dye free Walgreens diphenhydramine for swelling and edema. I'm finding that I do better with brand name meds. I suspect it is because brand name meds tend to have fewer ingredients and the active ingredients in generics can vary in doseage by 15%. Yeah, leaky gut is a slippery slope which is so hard to get off that mountain! Best wishes, Lyn

Thanks Rich. Just learned Singulair by Teva is out there already. The generic could save about 45 bucks a month, if I can tolerate it.

mytwogirlsrox, Have you ever had issues with MSG? Asian food, especially the soups, appetizers, and sauces are loaded with MSG. I have found a local asian restaurant that can make a white sauce from scratch and steam up some veggies, but they told me to stay away from the rest, since they are prepackaged and loaded with MSG. Lyn

Diamondcut, My primary doc, who is a DO and also trained in a integrative medicine tested my saliva for progesterone, estrogen, LH, FSH, DHEA-s, testosterone, cortisol and a few others, then prescribed the progesterone. My estrogen was really high and all the rest were low or nonexisistent. I get my progesterone cream compounded, and it requires a prescription. There are alternatives out there, some which you can buy at a hfs, but I shyed away from those. Cholesterol is converted into all those hormones and if one is low, it can hamper the production of a bunch of them. Lyn

Diamondcut, Have you looked into bioidentical progesterone cream? This is different than synthetic birth control, and is considered natural, because the progesterone cream is identical to what your body makes. I have found great success with progesterone cream in balancing out my estrogen. I take it on days 14-28, spread a bit of the cream on my neck, lower neck or inside of my arms. You can learn more on this site. Dr Lee is often credited with coining the term estrogen dominance, which describes when progesterone levels fall (possibly due to lack of ovulation, because ovulation triggers progesterone production and the next month ovulation does not occur if progesterone levels are low.) and estrogen levels are unopposed. Reminds me of when sympathetic nervous system is dominant and overtakes parasympathetic system. Neither can dominate, and both have to play well in the sand box. http://www.johnleemd.com/ Best wishes, Lyn

Dizzy, I have done a several month cleanse in the past and may try it again. It really helped me, but disn't do too well when I added the parasite cleasing herbs in the second phase, so I went back to phase one. Never saw any critters, but it definitely straightened out some nasty GI issues for me, and I lost some bulk and weight, which was a nice bonus. I did the Dr Natura program. Have you looked up the drug interactions with those meds? I was looking some antihistamines on www.drugs.com the other night and noticed that ketoconezole and its cousins are all listed in reacting to lots of meds, including the basic MCAS meds. I did see that claritin has much fewer interactions listed. So gross about the cod, because I love cod! i am so sorry for you. I wonder what else we're all eating..... Didn't know that about dogs. Good to know. So glad you are feeling better. Lyn

I had the time to find an earlier post with a tapering protocol for those who are sensitive to meds and am cutting and pasting it here. I'm sorry to hear you are reacting to the antihistamines. It may be the active ingredients, but it could be the inactive ingredients, such as the FD&C dyes (colors with a number, such as Yellow #5, Red #40, Blue # 1) which are known mast cell degranulators. These are called azo dyes in the mast cell literature. I go into anaphylaxis from Yellow #5 and #6 dye and to a lesser degree to the other numbered dyes, but seem to tolerate the oxide dyes. These are often written as red oxide or red oxine and also come in yellow and black. Zantac has the red oxide dyes. I have written many times on this topic, so feel free to search my posts and you'll find more details if you think this may be the case for you. Some are reacting to inactive ingredients, such as lactose or citric acid. And yet others react to a source of the inactive ingredient, such as corn or gluten or soy. There are dozens of antihistamines as well as dozens of formulations to try. You can also try to start out slow, take a 1/4 or 1/2 of the pill for a week and if goes well slowly increase the dose. Once you found a H1 that works, add in a partial dose of H2. Many of us have to take antihistamines 2-4 times a day. I always take a H1 at the same time as a H2, as I've read it works best in combination. Some even have to have their meds compounded without any fillers. For example, I tolerate the following H1's: Zyrtec tablets and liquid gels as well as CVS cetirazine (generic Zyrtec), Dye free brand Benadryl liquid gels and Walgreens dye free diphenhydramine (generic Benedryl) liquid gels Brand Allegra and Target fexofenadine (generic Allegra) - oxine dyes only Prescription Hydroxyzine tablets (white ones) Walmart Equate loratidine (generic claritin) And the following H2's: Walmart Equate famotidine (generic Pepcid AC) Brand Zantac - oxine dyes only Good luck with this trial and error method of finding a antihistamines. Lyn

Dizzy, I found out that I am really sensitive to the artificial dyes in medications, and when I avoid the dyes and meds with sulfa, I do ok. So based off of that, I'd recommend starting with claritin, generic claritin or zyrtec. Claritin is less potent and has fewer interactions than zyrtec, so Dr Afrin likes to start there. Once you have found a H1 that works, consider adding a H2. Start out slow and add only one med at a time so you can assess if you are reacting to the med. I found that I could tolerate other supporting treatments better once on these meds. My mast cells had to settle down and the antihistamines definitely helped me in doing so. Many do find that the sedative properties of anithistamines do go away after a week or so. You could start by taking the H1 at night before you go to bed for the first week. Note that others still have the sedative effects long after starting these meds. I have read taht zyrtec is more sedating that allegra, so some take allegra in the day and zyrtec at night. I've got several posts out there describing tapering protocols for starting antihistamines in case you are interested. I am very interested in hearing your experience testing and treating parasites. I do believe this is a huge issue for some. Lyn

Loulou, What tests are you having performed? It is crucial that plasma heparin and blood PGD2 be collected into chilled tubes, and urine PGD2 be collected in chilled jug, and all of them have to be kept cold throughout transport to testing to prevent the mediators from degrading. I face near daily episodes of anaphylaxis and have written dozens of posts on my symptoms, MCAS and my journey to get the diagnosis. My reactions have lessened since being on my MCAS regimen. Click on my name and you should be able to pull up all of my posts from the menu at the left of my profile. Rich, I take 10 mg Singulair each night and about to taper up to 20 mg a day once I am finished tapering up my H1 and H2 to 3 times a day. Is there a different anti-leukotriene out there? I only know about Singlulair, which by the way is about to go generic. Lyn

Dizzy, It is interesting that you bring up leaky gut. I had extensive allergy testing in the mid 2000's and had tested positive for a huge list of foods and environmental triggers. I was treated at that time with sublingual drops, probiotics, and liquid magnesium and put on a rotational diet, limiting my triggers for a while, then slowly reintrodicing them. That way I only recieved small amounts of any of my allergens at one time, and my allergen drops sensitized my immune system so i could tolerate them without symptoms. I was also treated for chronic candidiasis at that time and the goal of all this treatment at this time was to heal my leaky gut. Eventually, I had been referred out and over time that treatment plan had been changed, but I have been integrating pieces of that plan into my current one. My allergist at the time was a brilliant environmental allergist who urged me to NOT eliminate everything I tested positive for, just limit it until reintroducing it. My allergy testing showed my reactions were delayed, not the immediate hypersensitivy type that one expects with allergens (ie different than lets say a peanut allergy.), My food and pet reactions were slow and mild. My allergist felt there was just too much that I was reacting to and he didn't want me to limit my nutrition, as I reacted to corn, wheat, rice, brewer's yeast, baker's yeast, potatoes, lactose, casien, tomatoes, and a dozen others. He warned that by limiting ones diet so much, you lose the enzymatic pathyways required for digestion and breaking down foods. I have integrated that philosphy into my current way of life. Just about everyone else in the mast cell world is severely limiting their diet to only those foods they don't react to or low histamine or low salycilate, gluten-free, etc . In fact, even though tomatoes are on the high histamine list, I make a tomato basil soup from my own garden fresh ingredients and it clears my brain fog. I am guessing it is the high antioxidants helping me there. So I would hate to limit my diet so severely, because I did that years ago before seeing that allergist and I was miserable. I do choose to eat preservative and dye free, as I react horribly to those substances. I limit my intake of processed foods, and then tend to only eat things with 5 or less ingredients. I do limit my gluten intake, and often choose alternatives to gluten. I also was tested several times through allergy testing and antibodies a few times, all coming back normal. I seem to be able to tolerate it in small amounts, and feel horrible when I indulge in crusty warm bread or pasta, but I also do better when I eat bread with a protein. I could be having issues with the wheat, yeast or just a flare from the candidiasis, which can cause many of the same symptoms. I seem to to ok with a piece of sourdough or rye bread. But it's all so intertwined, so it's hard to sort out. Like you, I am choosing to use meds to stabilize and sort out my triggers. I know I need to find a local allergist, but often wonder if I should go back to that environmental allergist. He was located 3.5 hours from home, which is my main drawback. Once I get some things worked out, I plan to pursue my cause of MCAS, but since it is all so new, I suspect this will be much harder than finding the cause of my autonomic neuropathy.

Christy, I have found that physicians at a large academic medical center to be more open and understanding of my issues. I've struggled finding care in the community setting for years. My treating doc is a dermatolgist who practices over 2 hours from home, but at least I don't have to explain what degranulation is. She is well versed in the complexity of mast cell issues, just not familiar with some of the details or specifics of MCAS, but very willing to read and learn. She has several patients with CM. Still waiting for the treatment program from Dr Afrin, but she is willing to order whatever is needed at this time. She knew enough to taper up my antihistamines to maxout on them while waiting for his recommendations. As I get established on Dr A's treatment recommendations, I plan to find a local allergist to help me develop my tailored emergency plan and reaffirm those connections in my local EMS system. I am very fortunate that Benedryl keeps me out of the ER. Thanks for sharing. Lyn

Thanks LindaJoy. I traveled to South Carolina to be diagnosed by one of the experts and have testing performed in his lab. FOr me, both trips were well worth the distance.

Angelloz, In my case, I had unstable HR and BP, but it wasn't yet understood or diagnosed. But i had massive uterine bleeding at the time and my docs blamed the bleeding on a fibroid. I had a uterine artery embolization, an interventional radiololgy procedure to cut off bleed supply of my fibroid, and had an epidural for pain control. My HR and BP was even more unstable after the surgery, I had a excruciating headache that worsened when I stood up and lessened when I layed flat, which are tell-tale signs of a CFS leak. This headache progressed and by the time my one week follow up with my interventional radiologist came, I had to be wheeled into the hospital in a wheelchair. As I was leaving, I ran into the neuroradiologist, who I knew, and she immediately recognized that I had a CFS leak due to my positional headache. She performed my blood patch, where she injected my own blood back into the location where my epidural was placed. Within minutes my headache vanished, and I could walk out of the department. But during my post procedure monitoring, this was the first time we documented my orthostatic intolerance in my medical record, when I asked the radiology nurses to perform orthostatic BPs on me. A week later I had autonomic testing at one of my state's medical colleges. My autonomic neurologist believes this surgical procedure likely toppeled my autonomic nervous system into chaos, where as before it was just in disarray. I hear ya on the mysteries......... Best wishes in connecting your own dots, Lyn

Hippy, Long before I knew about mast cells, and right after I was diagnosed with significant orthostatic hypotension (my BP top number dropped 38 points during my TTT) and autonomic neuropathy, my autonomic neurologist put me on Zabeta, a betablocker. He wanted me to cut the tiny pills in quarters and have a really slow taper due to my severe sensitivity and reactions to medications. After the fourth day, (which means I had only taken in one entire pill in for days), my resting heartrate went from tachycardia to below 40 and would't budge. I was taken off the med and told to not ever try betablockers again, at least until we figured it out. I lived with the resting HR of 40 for about 6 weeks, until my it settled in the normal range, except of course when I had symptoms. I now recognize those symptoms, which have various different patterns as degranulation or anaphylaxis when they get away from me. Betablockers do 2 different things that impacts mast cell patients. 1) they trigger degranulation and can therefore add to our buckets/trigger anaphylaxis and 2) betablockers impact an important biological pathway, and prevents epinepherine from working properly, effectively lessening epi's life-saving role during an anphylactic reaction. Patients who are on betablockers and who are having an anaphylactic reaction will need glucagon to counteract the reaction. This impacts anyone: mast cell patients, those with asthma, a food allergy, drug allergy or after a bee sting in those who are suscpetible to severe reactions. Pretty scary stuff, but when one weighs the risk verses benefit, it just makes sense for mast cell patients to NOT take betablcokers. Many can tolerate a calcium channel blocker, like verapamil in the place of the betablocker. I can't tolerate either, so I focu on aborting and limiting my reactions as my primary therapy for my varying BP and HR. Best wishes in connecting the dots, Lyn

Thanks Christy for your posts. I especially appreciate your son's lab values, which helps me put my values in perspective. I also have dermatographism, the marks left after scratching the skin. Alan, this is a tell-tale sign mast cells are involved. Songcanary, yeah, its sad that meds have made we worse over the years and it wasn't until I learned about mast cells could I connect the dots. An allergist was the first to connect my previous sulfa antibiotic reactions to tachycardia to HCTZ, stating it was likely sulfa crossreactivity. I first started looking at sulfites since I was reacting to wine and liquors. The rest unraveled a little at a time. Trial and error works so much better when you have other's stories to know what is possible. Alan, ketotifen drops will stablize mast cells in the eyes and abort eye allergy symptoms.

Alan, Not everyone with MCAS has flushing. Do you have any symptoms related to your skin? But one skin symptom (such as flushing, rash, hives, swelling, angioedema, etc) and one symptom in another organ, such as the heart (such as profound tachycardia, hypotension, arrythmia, etc) or GI system (such as vomiting, "D", etc) at the same time can indicate anaphylaxis, which follows mast cell degranulation. One key point is that a H1 and H2 helped you feel better. Lyn

Ketotifen tablets/pills is not yet available in the US, but is available elsewhere. Zaiditen eye drops are available OTC. Arrangements have been made allowing patients who have been diagnosed with mastocytosis or mast cell activation to obtain Zaiditen, brand version of ketotifen in pill form. More information is on the TMS website under the announcements at the bottom of the page. tmsforacure.org.

Just found this in a internet search. It is from an email between and mast cell patient and Dr Afrin regarding benzodiazepines: Since it's just been discovered that mast cells also express benzodiazepine receptors, and since both Dr. Molderings and I have now had some patients (though certainly far from all) respond very well to benzodiazepines, you should definitely get around at some point to trying something in the benzodiazepine class, likely either lorazepam or flunitrazepam. Lorazepam will probably be the more easily accessed drug, and I have taken to starting it in my patients at 0.25 mg twice daily, escalated (as tolerated) every 4-7 days in 0.25 mg increments until maximal tolerance or maximal response is reached. Some of my lorazepam-responsive patients have noted that the effect wears off before they're due for their next dose, and in such situations it's perfectly OK to escalate from twice-daily to thrice-daily dosing. An occasional lorazepam-responsive patient has noted best improvement with varying doses, e.g., 0.25 mg on waking, 0.5 mg mid-afternoon, and 0.25 mg mid-evening.

Bren, I am so glad benzos are helping you. Just another clinical story pointing to complexity of all this. Nice to know there is another class of meds out there to possibly try. Before I learned of mast cells, I felt defeated because it seemed I couldn't tolerate ANY meds, when in fact I can't tolerate meds where the active ingredient is a known degranulater (such as beta blockers, opoids, anesthesia), contain sulfa or crossreact with sulfa (antibiotics, certain migraine meds, lasix, HCTZ) or contain FD&C dyes, especially yellow (specific doses of meds, like Synthroid, Levoxyl, where I can tolerate the white ones). Maybe the benzos will stabilize your mast cells enough for you to figure out if you are reacting to to something in your meds. It is interesting how many of us need to slowly taper up our meds or take really tiny doses. Could be related to how we process meds in the liver. Best wishes, Lyn

I've never taken benzodiazepines, but I've been reading how it can be helpful in taming mast cells. I know of mast cell patients who can't tolerate any H1s and will take a benzodiazepine and H2 to thwart off degranulation, in place of a H1/H2 combo. Dr Afrin mentioned he has several patients where benzodiazepines have been very helpful.

With proper medication, diet and avoidance of triggers, many people have resumed a near normal life, gone back to working full-time and manage this disorder without much angst. My mast cell specialist told me this disorder takes perseverence and patience. Lyn