Hi, I’m a new member here today with a few questions, and I hope I’m in an appropriate forum to start.

I’ve been on the hunt for a diagnosis and much-needed help for over 25 years.  I discovered Mast Cell Activation Disorder on the net a few years ago and everything fit so perfectly, I have believed ever since that this must be what is going on with me.  The more I read, the more sure I have become.

When one has a chronic and mysterious life-altering health problem, one needs not only help, but also validation -- you can be overwhelmed with the “It’s all in your head” responses.

In a nutshell, I’ve been feeling generally sick, often disabled, since 1985 with what was first called Chronic Fatigue Syndrome, Fibromyalgia, and then other such things that are considered Immune Dysfunctions of one sort or another; but on the very top of the heap of troubles-that-must-be-addressed, is the fact that I go around reacting to an outrageous number of foods and drugs, so that I have little left to choose from in healthy foods, and nearly no medications.  Many illnesses are going without necessary medications because of this.

Medications that I took for years and which then started causing anaphylactic-type reactions, and other drugs that I took only once when wild, frightening things would occur.

Virtually no one has believed me.  I woke up from one surgery and heard the nurse laughing loudly with her co-workers at all the “so-called allergies” I had typed on my list, saying I had to be crazy, and truly, all doctors have told me that such a list of allergies is impossible, insinuating that I am delusional, one telling me in so many words that I “made it all up”.

Such drug and food allergies have sent me to the ER several times, and each time, the medical team have taken much time getting to me.  My average waiting time in the ER is about four hours -- by then, I have always improved, and ultimately survived, fortunately.

I believe I have a Mast Cell Activation Disorder, by whatever name anyone wishes to call it.  It makes perfect sense, from everything I have read.  

My “allergic routine” is that when eating certain problem foods, or when a problem drug hits my bloodstream, I will suddenly go ice cold, my blood pressure drops and my heart rate goes into tachycardia, I will be wildly dizzy, my vision blurs, and blackness starts washing over me in waves.  So far I’ve not gone completely unconscious, but I get close to it.  I can either turn white, or get hot and red.

This happens with far too many “triggers”.

It has happened to all antibiotics I have tried, except for Cipro, that’s all I have left.  What happens when it goes?

I have three pages of listings of my adverse reactions, in small type, that I carry around with me, in case of emergency, along with an outline of my general health issues.

I’ve had problems with diarrhea about five days a week, for 20 years.  

I hurt all over; I am so fatigued I have sometimes gone to bed for months at a time.  I manage to stay upright most of the time, but all hours of the day are difficult.  

I do get hives, and rashes.  Not the kind of rashes I see on Mastocytosis pages.

But I have no doubt that I have a body full of “Mast cells behaving badly”, that seems to be the story of my life.

I’ve noticed that anytime I go through a special period of stress, I will lose a few more foods.  Attempts at exercise make everything worse.  Perfumes make me sick.

I’m at a bad place right now, as I need dental treatment asap requiring anesthetic, so this past week I maxed out the charge cards and went to Mayo Clinic and took my carefully collected notes to Dr. Weiler, who is said to be good to consult about Mass Cell Disorders

I regret to say that she kept pointing to my pages of symptoms and insisted they were not indicative of allergy reactions, or MCAD.  I know that they are.  She kept saying she thought I was probably just having anxiety attacks.  I know that they are not.

I should have anxiety attacks over taking aspirin or Advil -- after many years of taking them successfully?

I should develop anxiety attacks over drugs like Minocycline and Glyburide, which I had previously tolerated just fine?

I should have anxiety attacks over eating tomatoes and long lists of other foods that I had eaten -- and enjoyed -- all my life?

She gave me the Tryptase test, which was normal -- as I expected it would be.  She gave me the 24-hour urine test which I will get back in a month, she said, but I expect it will be normal, also, as I was not having any reactions during those tests.  Why are they even given credence, when it is known they will not likely show anything while “nothing is going on”?

She did the Dermographic test on my back -- that was positive.  And some part of the blood test that showed my allergic state was “225” when normal high limit was said to be about 125.  I’m not familiar with that one, so not sure of the numbers.  I had also taken her my print-outs of results from my previous allergy doctors, so she would know I wasn’t making it all up.  She didn’t think much of those tests, though, and ended by reiterating that she thought I was probably dealing with anxiety symptoms.

I realize now I should have copied the information from the Mastocytosis Society web page, with the listings of my symptoms right there in black and white, to show her, as she kept saying I was not a candidate for Mast Cell Disorders or even Allergy Disorders. I couldn’t believe the response I received from her, I am still feeling shocked.

I went for help, and validation, and got quite the opposite.  It was another instance of being told, in other words, “It’s all in your head”.

So, I am at a loss as to what I should do next.

What is timely right now is that I need a root canal, and soon.

I went to several dentists and endodontists so far, and actually started a root canal with one who made me feel comfortable, he assured me it would be “a piece of cake”.  But shortly after he gave me the injections of Carbocaine, the troubles began:  I started feeling very sick, and started going black, in waves of dizziness and faintness.  So strongly that he immediately quit, although he had already started a hole in my tooth.

Here I am, hole in tooth.  I have to do something, but I will admit, I am now quite anxious about the next anesthetic injection.  And no dentist wants to touch me.  They tell me that I should consider Conscious Sedation, but that still requires the anesthetic, plus More Drugs on top.

Question #1:  Can I reasonably email one of the doctors in Boston that I have heard about, and pass on this info, asking for advice?

#2:  Those of you who have similar serious reactions, what can be done about dental work?  Working on the outside of teeth, I can get by, but not drilling out the roots.  I’m considering just pulling the tooth, but the roots go up into my sinus cavity...

I will be driving three hours tomorrow morning to go and see another dentist (if the snowstorm allows me).

All advice welcome, thank you.

Oh by the way, as to the conscious sedation with dental extraction, this is what some of us have to do, Summer.  But if you do have masto, then the type of local that the dentist used could be an important factor too.  Go to the section for the medical protocols and take a copy of this to the dentist and ask his opinion   They are medications that most people rarely have bad reactions to and perhaps he'll feel that it may be what he needs to get you through this without problems.  

However, again, without your having been worked up for the carcinoid syndrome, all of this is very questionable and if the dentist could put in a temporary filling until after you can get some real medical investigating done to at least give them an idea to try to point the finger in the direction of carcinoid, lupus or masto, this would be best!!  You don't want to make yourself sicker, do you?  So having more information is what is needed.  So you might want to consider this.

Lisa

Thank you for your responses.

I hadn't heard of Carcinoid Syndrome before -- thank you, Lisa, for the suggestion.  I have Googled it, and really don't recognize it as being mine, too many symptoms in the mix that I never have.

I respect the concern over mis-treating.  I have wondered, myself, when I should use the Epi Pen, if my heart is already firing like a machine gun at a reaction.

Over the past 25 years I have been tested for Lupus a few times, and various other things like Lyme disease, all come back negative.

The only thing we were ever able to call it, as an overall -- but nebulous -- title, was Chronic Fatigue Immune Dysfunction Syndrome, but under that umbrella, it's always been a mystery why so many of "us" are riddled with apparent allergy reactions, to so many substances.  Not all CFIDS sufferers are "allergic", but very many of us are.

I have been to a famous allergy clinic in La Crosse, Wisconsin (Allergy Associates), quite a few times over the couple of decades, and they have always (always) said that my reactions are, indeed, anaphylactic and serious, and coming from that, I was nothing short of astounded when Dr. Weiler said that they were not allergic, nor anaphylactic; she said that if I was not swollen or gasping for air at the same time as all my other symptoms, they weren't allergies or MCAD.  

At Allergy Associates (I'll call it AA), they fully recognize that everyone reacts with different "packages" of symptoms.  That said, sometimes I do have lip, tongue and throat swelling, all by themselves.

At AA, their process is to treat allergies with sublingual antigens, rather than the usual desensitization shots that most American allergists give -- the reason being, some folks can become anaphylactic with shots -- I always reacted to them, myself, when I used to do them.  The under-the-tongue treatment is a more standard approach in Europe, considered safer, and each time I am at AA, I listen to people in the waiting room tell how their lives are so much better since doing the drop treatment -- so I know it is valid.  Mayo Clinic has always been outspoken about not wanting to "go there", and there seems to be a real rivalry going on between them.  So maybe my taking in my records from there, put the lady off, I don't know.

Whatever, when I used the sub-lingual drops from AA, I eventually began to react to them, too, no matter how small the dose (a very unusual response), so I have not continued doing them, and am still looking for the root of the problem and better answers.  I think MCAD is the root.

I wish very much that I could go to Dr. Akin in Boston, and I would abide by whatever he says, or his associate there.

But it would require a miracle.  My husband and I have exhausted all our funds and charge cards to do what we have, this trip down to Mayo last week was the last resort.

If Dr. Akin or his associate would be willing to communicate with me by email, I'd be grateful, but I know that would be asking an awful lot.  I have all my records and history compiled neatly, ready for sending, and discussing.

I'm in the upper Midwest, US, near Duluth, Minnesota.

I've seen an oncologist here, but she said she had no knowledge about MCAD, only the cancerous form of Mastocytosis, which I do not think I have.

Now that Dr. Weiler has put me off about it, I'm afraid no other doctor is going to want to venture beyond her professional word, they would think, "Who am I to argue with Mayo Clinic?".

Still, I am waiting on the 24 hour urine test -- I just do not expect it to show anything.

I had to put off my dental work until next week, as we just had a major storm up here and the roads were too bad to travel.  I normally do a 3-hour drive to my favorite dentist, as he is the best one I have found, so far, who respects my sensitivities, a very conscientious person.  Although even he is starting to get afraid of me by now.  A long time ago, he had replaced all my old mercury amalgams with safer materials.  I started going to him about 20 years ago, when my symptoms were still fairly new to me.

I've tried everything I could find over the years.  I believe I've narrowed it all down to the true culprit -- for what that's worth -- and I'm just floored that Dr. Weiler blew it off so abruptly.  I even proved to have the "writing on my back".

First of all, you DON'T share the mayo results with new doctors. That doctor is not right at all in regard to the breathing/swelling problems. I never have either of those, which is exactly the reason that no ER docs ever knew I was in anaphylaxis. I was diagnosed with mast cell disease by a doctor at Rush hospital in Chicago, and then received the specific diagnosis of IA by Dr. Akin.

I can give you the email for Dr. Akin, but he won't be able to treat you via email since he has never met you to evaluate you. HOWEVER, he is very kind and would probably give you some pointers, and maybe even a referral to someone good near you! He is also fine with working with your local doctor on advice for what to try. This works well for me, as I have my local doc and Dr. Akin will help out whenever my doc is unsure of something.

Oh Summer, I am so sorr for what youre going through. Most of us have walked that sad road and it takes the average masto patient 9 years to be correctl diagnosed, so dont be downhearted!! Youre here ith us.. its gonna take some time but youre gonna be ok!! Have faith and stay with us and ask an questions you want.

OK lets tackle one thing at a time. MOST doctors are just like that Dr Weller--not educated in Masto and they don listen well when they cant solve it simply themselves. You need 2 things first--a primary dr that will work with an expert.. then you need an appt with an expert.

The Primary--look in the field of Hemotology.. Tell him you have an appt with Dr Akin for diagnosis of an MCAD category.

Dr Akin is the perfect choice to have as expert.. Make an appt NOW. He is very requested and you probably wont get an appt for a good length of time--time to figure out finances. He is an angel. He WILL work with your primary dr.. he cant do it with you over the phone until he sees you in person , understand? When you see him, Dr Akin will rule out Carcinoid by testing. He will give you the answers you so desperately need now.

I want you to take that page you call allergies and re-title it to "Psuedo Allergies" and "Triggers that push me into Anaphlaxis". Most of us have a handful of REAL allergies but a HUGE list of Triggers--there is a list here of triggers--print them out. Remember that triggers react like allergies. and they are treated just like allergies because they can push you into anaphylaxis.  

Debbie is right, try a few different over the counter antihistamines and see if you feel better.. That wont hurt you and if it makes ou feel better that points us to a better understanding of where you are health-wise. Try something like Zantac, zyrtec, Claritan.. and let us know how you feel.

OK Hon, you have ALOT of reading and printing out to do.
1)Go the the thread on histamines in food--and avoud those like the plague for now.. Read the low histamine diet.. use it for now.
2) Keep a diary of foods/activity/how you feel daily-it will show you patterns to what your triggers are
3)Go to Emergency Protocals thread.. there is a list of protocals there--print them out and keep them with you, keep a bottle of Benadryl with you too.
4)Read through how-to set up an emergency notebook.. and think about how you will set yours up. This is URGENT... when you go into Anaphylaxis you cant think well can you?? This will talk for you. Take it everywhere you go.
There are so many other "triggers" that affect us.. READ about them... We are not all the same BUT we are so very similar in most things..
From now on, when you react and need emergency help, tell them you have an "Anaphylactic Disorder" They know how to treat that ok?? When they ask for which allergies, just simply say "Multiple" its easier for them and you, no wasting time or getting into a conversation that you wont win, since they wont understand.

OK I lm sure Ive forgtten some things LOL, but this is enough for now.. Time for you to do your homework!!!

and which state are you in??
Hugs,
Ramona

Hi,

It took me about 16 years to be diagnosed, and I agree, it's no picnic!  I'm disappointed to hear about your experience with Dr. Weiler, as she is well-respected in Masto circles.  Did she give you any direction as to where you should go from there (besides to a psychiatrist)?  My doctor told me that my problems were not psychological, because anxiety attacks don't wake someone from a sound sleep.  If you've been awakened in the night with reactions, then it's not likely to be in your head.  My anaphylactic reactions start with anxiety most of the time.  I don't think the Zyrtec caused you to go to sleep for hours.  It was probably something you were eating that either contained a lot of histamine or caused your digestive system to produce a lot of histamine.  If so, the Pepcid should help. Xyzal is a newer version of Zyrtec, and I think it's very good with few side effects.

I have just a few additional thoughts.  As Debbie has said before, MCAD/IA is a diagnosis of exclusion.  It sounds like there still may be a few things to exclude.  Besides carcinoid, there's another disease, pheochromocytoma, that can cause similar symptoms.

It sounds like the 225 might be your IGE.  If it is, and it's elevated, there are other things that can make your immune system go crazy.  One is parasites, and I would get checked for those.

There are also conditions in the immune deficiency category that can actually cause allergic-like symptoms.  My friend has a primary immune deficiency, in which she doesn't produce antibodies to certain bacteria and viruses, and it made the rest of her immune system go crazy.  She would get flushing, hives, edema, breathing difficulty, full-blown anaphylaxis, etc.  Antihistamines were of limited help.  I don't know if an infectious disease doctor or an immunologist might want to test you for that type of thing.

If you're reacting to so many things, I can't help but wonder if you're malabsorbing some of the things you ingest.  Getting your digestive system straightened out (if you can find something you can tolerate) might help.  I hope the antihistamines help you.  Be sure to ask your doctor what is the maximum dose you need to take.  A "normal" dose might not be enough.

Hope you find some answers!

Hello Summerfields, I also am in the 25 year undiagnosed stage, very similar reactions/intolerances to yours. I'm guessing they've thrown Multiple Chemical Sensitivity your way also.   I have not been to a dentist since I was 11 or 12 I'm now 43. By that age I had had such horrible "reactions" at the dentist I was never going back. WE didnt know thats what they were. #1 don't respond to "in your head" accusations anymore, just smile and mumble, "Right, I mean everyone would want to live this way for attention" and move on from that moron! Ok, now before I forget, Clifford Materials Reactivity Testing http://ccrlab.com/  runs a series of tests that tests your blood reactions to a large variety of substances used by physicians/dentists and lists your reactions and your most tolerated. I've been needing to do this for awhile that way when its time the dentist will have some choices. Just keep in mind just like "allergy testing" this will not be absolute! But it gives me a safer decision making group. Of course many tout this is junk science, that'd be the ones overprescribing medications then re medicating the patient with a new slew of cocktail
when the side effects hit,  rather than finding the true cause,,,,. Ok, I won't get on the soapbox,  but it irritates me. Ok changing subject:
There are a variety of over the counter meds as many have said that address mast cell issues,  above and that's what I did. I began experimental self treatment and by golly it helped. Possibly really giving some basic protocol a try.  The one rx I get is allegra, It has helped me a lot (gastrointestinally) and any GP will give it to you for seasonal allergies! Many take claritin or zyrtec and do fine, didn't help me, Costco is the cheapest place I get it allegra and I love the delivery by mail. Teva brand is a brand I tolerate the best. Evenings I take two benadryl also upon that feeling that all is heading south. So many things cause us to degranulate. I'm still trying to get a few more in the system, but so far I do not tolerate much. What you are willing to give a go just educate yourself on the inert ingredients, and make the best decision possible. I'd really encourage you to just start some sort of antihistimineing and back to you needing to go to the dentist. Print those lists of "typically tolerated" The big one before is to pre medicate with your antihistimines before the procedure, Again we are all different in what we tolerate and make sure your dentist knows what you've taken, you do need to consult before and then go back for the procedure that way he can understand and read your information . Welcome to the forum and really read read read on our other site, just begin somewhere if you feel better then it is worth it. Don't get me wrong I'm not perfect and we all say that, this family of disease needs constant management. I'm in a degranulation frenzy lately, I up my stuff and do my best to avoid what I have to.  I wanted to also say I understand being chronically ill for a long period of time and I chose not to look into My "bone health" some of those other trendy things to get all worked up about. I've not been able to eat many foods for 25 years, I've thown up medications and vitamins galore. I do what I can do for my diet and health and constantly try to re introduce something when I'm feeling better. But me knowing How depleted my bones are is just stupid for me. I don't want to take the medications for it, the side effects make me want to laugh, if I could the foods would be eaten but i dont have that choice. So I just rely on faith and I'm doing all I can and thats that. Now dear, just a Sandi intro, I will jump online when I am exhausted in the evening or sometimes during the day and think Oh, I can't be on here right now I have to...... but then I see a post and think OH gosh I just have to say something real quick, and poof welcome to my scattered thoughts!  
Sandi

Summerfields! Singulair is one I am seriously considering, I've been seing an MD that is also a homeopath and naturopath for a very long time, he feels Singulair is a safe med, now keeping in mind we are "special" so it may not work for all MC peeps, but for the gastro/environmental issues he was really game. I do not have asthma or asthma like symptoms. I believe Deb takes it also when she is "acting up" and is able to get off of it in calmer times.  Ramona is totally right in changing "terms" you can say when I eat or am exposed to _________ it triggers me and I begin to ................. we should all use that vocabulary to help the special docs along in their denial! Also, survival for a lot of us is balancing real medicine with homeopath/naturopathic things also. It is frustrating it takes so much time to "test" things, I've had things expire before I could test them, Just never had enough "symptom free" days to test something. I like your starting meds those are good, just figuring out a brand that will work for you might be frustrating. I'm still trying for a pepcid. Going to go to a compounding pharmacy soon and speak to them. Somewhere on here Chaco and I were discussing that.  She gets it done for several medications. They are able to put only what you tolerate in the pill. I've been out of the workplace since about 89 also. I try my best to save money by cooking pretty much everything from scratch for the fam then theres my food, so I do my best to save as much as possible watching sales etc. I mentally think of it as making money! We are self employed and luckily I can do the bookwork at home! Theres no way I could work, I trigger to too many things. I hope I was making sense earlier on the "osteoperosis" issue. I don't want to seem crazy to anyone doing it! For me personally I have to get my symptoms managed if and when that is finally calm then I could address other possible issues. So for me that is just chasing a concern that is pointless right now. Oh I know what I was going to say earlier about balancing holistic and medical. A lot of us tried to "not use medicine" with this disease that is not at all what needs to be done, this is a serious medical condition ( ummmm you know that by how much trigger and how continuously bad you feel) by the time I came across the mastocytosis info I had tried everything under the sun holistically, I don't believe this can be cured by cleansing and purifying, I've been there and am there! degranulating mast cells just don't care they just like to pick a new thing to trigger too. Don't know if this will apply to you but our "monthly cycle" triggers me terribly. I want to say Joan also but might be someone else, thats the frustration sometimes you can't figure out whats officially triggering you it's a compilation of things filling your bucket until ...... spillage! Ok I will stop babbling now. Everyone is so great here with letting you know what works for them, and thats the key, you have to figure out what works for YOU! If you can keep a notebook with info of what you are eating/medications and what is happening with your symptoms. You never know what ahhh ha moment you will have. My DH has a favorite saying, haven't we been around this mountain before,,,had I had a notebook maybe I would have been able to look back!!