Some of you know me from other groups/forums, but this is my first post here.  I am a married 52 year old mom of 3 girls aged 9 to 12  (one a late life miracle pregnancy and 2 adopted from China).  I had been diagnosed previously with hyperadrenergia and POTS (a dysautonomia) but managed to be reasonably asymptomatic for years mainly with fluids and avoiding triggers (like too many glasses of wine or lack of sleep).  Then 2 months ago I had an anaphylactic reaction to an antibiotic, which was shortly followed by milder but clear reactions to other meds and foods that grew worse each week until I couldn't eat hardly anything  (I've lost 20 lbs so am at my ideal weight   but I don't want to lose more), and then recently to strong smells (gasoline fumes, perfume).  My PCP and local allergist started thinking MCAD when I tested negative to the foods I was reacting to, although I did show a slightly elevated overall IGe.  

This illness has turned my life upside down and I am really getting depressed and worried.    I need to get stable but I keep getting worse and had to take part-time leave from my job (I'm lucky in that I can work part-time at home, or at least my bosses are letting me do so for now - - but they certainly won't let me do this forever), and I'm having a hard time keeping up with my kids' activities and everything else.  My husband travels some for his job and I don't have other support, so I need to be well enough to take my kids to/from school, etc.  I am a former college professor in an unrelated field, so of course I've gone to the internet and researched everything I can about this, but still I have many questions.  Hoping someone here can help ...  Here's my testing and meds history:

Local allergist I first went to didn't know much about MCAD so did minimal testing (I showed a negative tryptase of 4.2 [normal by the lab's norms] but was non-symptomatic at the time, and he ruled out carcinoid with a 5 hour urine 5-HIAA.  I had the 24 hour urine test that ruled out pheochromocytoma years ago when my tachycardia began), and I don't think he took me seriously, frequently asking me about my "anxiety level" (who wouldn't be anxious when their happy life is suddenly a mess? But no, I don't think I'm excessively anxious.  Grrr    ).  Over 6-7 weeks he put me on H1 and H2 antihistamines (increasing amounts due to increasing symptoms) and had me spray my throat with Nasalcrom or gargle with liquid Benadryl since I was having such nasty throat symptoms (irritated, red, felt like gunk accumulating in my throat and trouble swallowing).  As of last week he had me on eight 25 mg Atarax (hydroxyzine) per day and three to four 25 mg Benadryl (dye free caps or liquid) as needed for acute symptoms, and two 150-mg Zantac per day.  He had me try Singulair, but the two times I took it I had a bad reaction shortly after so quit.  

Last Friday I FINALLY (had been on the waiting list) got into National Jewish Hospital's allergy and immunology department (we live in Colorado) and saw a doc that a nurse friend of mine recommended (Dr. Tho Truong; I would have seen Dr. Richard Weber but he's out for at least 2 months with a broken leg, but she says she consults with him closely anyway - - anyone on here had experience with Dr. Truong?).  I liked her and found her knowledgeable.  She said she knew Dr. Castells and was reasonably familiar with MCAD and POTS.  She acted shocked that my first allergist hadn't done more testing and ordered a ton of tests, which I'm awaiting results of.  These included a tryptase and 24 hour urine (n-methyl-histamine and prostaglandins) while episodic (I had a good episode over the weekend and Monday so got those, some hematology tests (not sure what ones or why), genetic test for the C-KIT mutation, and some other miscellany blood work and testing of my vitamin D levels (since last time my regular doc checked my level was practically nonexistent).  I am awaiting results and have an appointment to see her again in 3 weeks.

Meanwhile she thinks I may have been taking too much Atarax and Benadryl, since she said they're both first generation H1s that can cause anticholinergic effects or "rebound" (anyone know what she meant by the latter?) so wanted me to substitute 10 to 25 mg doxepin for the last Atarax dose and also to try adding Singulair again and Allegra.  She said try one at a time.  I am scared of the Singulair since I think I reacted when I tried it before, but I'll try again one more time if I can't find something else that works.  I started with the doxepin last weekend, and after 3 doses (10-15 mg) had to stop as it was a very clear negative reaction - - although others say it makes them sleepy, it made me very hyperactive and jittery and an insomniac - - plus it made me have loud tinnitus and tachycardia.  New doc also gave me a tapered steroid pack (Medrol) but I also couldn't tolerate that longer than 1 1/2 days - - might have been the corn filler I reacted to.  So now I'm taking 6 Atarax a day still (trying to cut back from the 8, and so far hasn't made any difference as far as I can tell), a few doses of Benadryl only if needed for a bad episode, and new doc said take 3 Zantac/day (instead of 2), while staring at the Allegra bottle but afraid to try it before my husband is home from work.  Despite all these antihistamines in my system, I am still symptomatic. Sigh.

My symptoms before the antihistamines included hot flushing, hives, itchy scalp, blood pressure and pulse volatility, and occasional episodes of urgent liquid diarrhea. (I've never had the bone pain sometimes mentioned here, nor vomiting or stomach pain). Now my episodes (several times a day) are flushing hot/cold - -but most often ice cold all over with pale rather than red face [although my cheeks went bright pink when I was on the Medrol/doxepin], and blood pressure and pulse volatility with some diarrhea, but no more hives and only infrequent scalp itching.  But I also have new and alarming symptoms this past week: numbness that starts in my face and throat and spreads to my upper back, arms, and toes.  Sometimes this is more one-sided, and sometimes it includes my tongue.  And sometimes my body temperature registers too low.  I am not, however, having as bad of the irritated throat problem as I was before, so something is better there.  Anyway,  I take Benadryl to stop attacks and the numbness slowly goes away after a time and the blood pressure normalizes and I feel warm again  (and yes, the doc gave me an Epi-pen but I haven't had recourse to use it yet).  If this was anticholinergic syndrome, I should be hot and red, not cold and pale, right? Could this be low level anaphylaxis that I'm still having?  I react so often and to so many things that I can't tie it to particular foods or meds or something else - - I'm ONLY eating chicken, steamed vegetables, and rice right now anyway - - and sometimes I seem to react to nothing!  I am keeping a log and hoping I see a pattern soon.  

My new doc said she will talk to me about mast cell stabilizers "later" (presumably because she hasn't finished testing).  I asked her if she'd consult with Dr. Castells and she said that at this point she would just give us a list of tests to do anyway and we are already doing those.  So that's where I am with this crazy disorder.  I welcome and appreciate any thoughts and suggestions -- I seem to be on my own with medicine trials and mixing until I see the new doc again in 3 weeks.
P.S. Thanks for reading through if you made it this far! Sorry so long.
Carol

Hi Carol and welcome to our forum.  I hope you feel at home amongst us!

It sounds to me as though you FINALLY are in the hands of a competent doctor who although may not be a specialist in masto certain has an idea of what she is doing and how to go about hunting it down.  

In view of that, I think you need to be patient and work with your doctor as regards to the meds for she obviously has an idea of what MCAS and is going to do her best to try to get your masto under control.   I know it's torture, but just hold on a bit for often our doctors gather clues as to how we are responding to our meds when they are working with us and this gives them insight as to what is going on.    So, be patient, your doctor is working towards finding answers for you.  

In the meantime, try eliminating some of the histamine foods and see if this helps.   Let your doctor know about this and keep a journal of when and such and then list the reactions when and how they appeared and with what foods you ate that day.   Then take this back to your doctor and see if she can make some sense from it fo this may help her as well.  

I agree with you about not aproaching Dr. Castells and waiting upon your doctor.  You don't want to discourage your doctor especially since she's showing the right attitudes.  Besides, in order to see Dr. Castells you need a local doctor to refer you, so this is most defintely the doctor you want to refer you for she's already made contact with Dr. Castells and shows she's obviously OPEN to a relationship there.   Sadly, too many of our doctors have an incredibly independant spirit and don't want to work with other doctors.   They find it too complicated especially if they don't understand the disease.   So, finding one who has already made contact is EXCELLENT and you need to gain the trust of your doctor.  

Remember, as much as your doctor needs to gain your trust, she also needs to learn to trust you.   Too many patients will abandon a doctor after the 1st or 2nd appointment and the doctor can't get anywhere and this makes them incredibly frustrated.   So, give your doctor time and a chance.  She seems like the PERFECT doctor and the more you invest in her, the more she will invest in you or so it seems to me.


Lisa