Hi Spring!  Welcome!!


I'm sorry to hear how very sick you are!!   I can't imagine going through what you must go through!   I'm IgE negative to all the things I also show allergic reactions to.  It certainly makes my doctors scratch their heads in disbelief!

Spring, the closest masto doctors to you are in South Carolina and Virginia.  However, you have such a case as I'd say you need to go right to the top and those doctors in Boston!!

Have you ever had your tryptase measured or your urine histamines and prostaglandins?   If you could ask your doctors to measure these mediators, this would be your first testing to help reveal if you have a mast cell disorder.   Have you been tested for the carcinoid syndrome?  this is another must rule out as well, for both of these diseases can create pseudo allergic reactions.  

If you can get these measured, then we can help guide you to some of the experts who can help you with these.  As to the heat, we all suffer from that and there's no escaping it except to say in the air conditioning when it's hot.  

I hope this helps.  I'm sure some of the others will pop in here and add a bit.  Hang in there Spring, hopefully we can help you find some answers!


Lisa

Hi Spring,
everything youve mentioned IS a mast cell symptom--I worry that your specific triggers will leave you in a no win situationas far as diabtes and shock is concerned..Yes we are snesitive to many things but you have to have enough meds left that you arent sensitive to, to fight off mast cell behavior and to keep your diabetes under control. There are different types of insulin--I mean, humalog versus humalin and lente too. (Im a nurse and diabetic too). You have to keep trying to find one you can take. Same thing with cortisones. some people can take them and those who cant should try the other type of steriod, there are a few different types. Pay attention to fillers--you might be reacting to them instead of the actual drug.

Stay OUT of heat, its a major trigger for me too. NO warm water when you bath--lukewarm only, room temperature--see if that helps.

With all your diagnosises it shouldnt be hard for you to get SSD or SSI. Please look under our Disability thread for tips on getting through that.

That low histamine diet is a must for you!
Hope this helps,
hugs
Ramona

This is the first I've heard of the histamine diet. I will have to google it. I basically got told I have a Mast Cell Activation, do you have epi-pens? come back in 3 months. We then had to move again and landed in Alabama in no wheresville. I take 20mg of zyrtec (I take the generic from Costco) and usually 50 - 300mg of benedryl daily. And I don't take any H1 blockers (thats the zantac right?) except in an emergency. I have rx for compazine for migraines. and was recently prescribed omeprazole because I had some odd pain under my left ribs. I got it filled but haven't ever taken them and the pain eventually disappeared.  I thought the Dr was nuts giving me meds for GERD since I've not got that prob. But since he knows about the MCAD maybe he wasn't as off as I thought.  I rotate between Humalog and Humalin for insulin as I am afraid I will become allergic to one if I take it too long again. Since I did to both the Lantus and Levemir. (both are long acting and now I can only take the short actings) I also take Topamax for migraine prevention. I take an array of vitamins and they do help. Flexeril, percocet, tylenol 3, ambien and ultram round out my prescriptions. Oh and of course the albuterol. I prefer the nebulizer over the inhaler. If I use the inhaler it HAS TO BE the blue one. Did you all know the yellow one may have peanuts in it!?! One of the inactive ingredients is lecithin. It doesnt say the source of that lecithin. and can be from either soy or peanut. I have reacted badly to it before but was told it had to be the propellant. I just recently came across info on the lecithin by accident on facebook, it makes more sense now! Of course I have epi on hand everywhere I go, I carry 4 pens, benedryl liquid as it works faster, and liquid mylanta again for the faster reaction time. I use pills at home for my regular usage needs but I carry liquid with me for emergencies.
My situation is also likely complicated by a pituitary tumor. It needs to be monitored by MRI every 6-12 months. I am concerned now that I have had a reaction to prednisone as they want me premedicated for the MRI with prednisone and benedryl. I have had odd feelings from the contrast in that my left eye starts itching and burning during the test after they inject it and I start feeling hot and flushed. However I had an ANA reaction to prednisone so I can't be premed anymore. Any suggestions? Not using contrast isn't an option as they can't get the dynamic pics of the tumor w/o it and I am past due for the test. My aunt also had a reaction to prednisone recently and is allergic to most the antibiotics too. My late grandmother had very similar allergies as me I'm coming to learn. Is this MCAD hereditary?
I will write down all of the tests suggested and give them to my PCP. Hopefully he will work with me to get them done and then we can try to go from there. He seems intelligent at least. He is an internal med dr and board certified in emergency med. So maybe he at least will be somewhat receptive.
Oh someone mentioned somewhere on one of the posts I read that zofran is best for us? I had a reaction to it too. My blood pressure tanked and I turned all red when they gave it to me. ;0(
I was told I'm a puzzle. I guess I had no idea how much so.........
Also thank you for the reminder of the rheumo. I forget what specialists I need to see. Ehlers-Danlos is a connective tissue disease (genetic) Its a disorder of the collagen and therefor everything gets injured real easily.
Thanks everyone for reading and responding too!
Spring

Hi Spring!
That histamine diet is a HUGE deal. There are so many seemingly healthy foods for most people that would put us in active reactions, possibility in the hospital. You need to severely pare back your diet--and start a food/meds/activity/how you feel journal to see your own specific patterns and triggers. After you become more stable, you can start adding back one food at a time and test your own reactions to it, not now.. youre not stable enough.

Wow, so much I need to say to you. Many of the meds you mentioned arent prescribed for the reason you gave and Im just concerned that you wont know what to grab when you need it.

Compazine is for nausea and vomiting--which you can develop when you get a migriane, but isnt for the headache its for the nausea. The topamax is for the migraines. I cant take zofran either--it just doesnt work for me, I take phenergan (promethezine) for nausea, that works for me.

Yes, you need both H1 and H2 blockers, mast cell stabilizers and possibly proton pump inhibitors (the Omneprazole), in case of heartburn, thats when you take it. You should be on Zantac daily--most of us take 300 mg twice a day and it makes a HUGE difference. Talk to your DR about adding the meds you need. We cant exactly suggest them because of the problem you are having with the pituitary tumor, Im not sure what might affect it. Ask your DR.

I wouldnt worry about reacting to the insulins--Lente is much more reaction provoking than Humalog or Humalin. Try to keep your sugar under control. High sugars with me make me react quicker to other triggers and then the high sugars make the reactions worse and harder to calm down.

Your Flexeril, percocet, tylenol 3, ambien and ultram are a source of worry for me--I say that because most of us react to pain killers faster than almost any other meds. Now some of us do take meds for pain (I do) but you should be extremely careful when doing it so you would know what you reacted to.

Instead of the liquid Mylanta I would take the Omneprazole--it works much faster and stops the acid producing, unlike Mylanta that just changes the PH of the stomach--but for only very short periods of time then you hurt again. The Omneprazole (Prilosec) is a much better choice.

Very good ER kit, add some Zantac to it.

Most of us are very reactive to any contrast dye and it would put me in the hospital! Tell Drs that you cant take contrast dye OR to make sure it doesnt have any iodine in it.
Hope these suggestions help you!
Hugs
Ramona

WOW! Looking over the histamine diet is interesting. Not only because of the things listed that you can't eat but because of the things listed that I have already stopped eating because of one of two reasons. I either feel it is not healthy for you or I have oddball reactions to it. Oddly enough just last week I made some jamaican beef patties and they have curry in them, I had a reaction to them. I presume it is the cumin in the curry as everything else in my curry powder I use seperately without reaction. I find it amazing that it is listed here. I forget all the little things that I react to when I'm making a list sometimes. When I remember I put it in my notes on my iPhone though, that way its always with me. I also send this list to my husband whenever I update it so he has it with him. Oh and last night I had some jello and the roof of my mouth swellled a little! Easily overcame with some extra benedryl but very interesting. and most frustrating since I'm known to drink warm orange jello water for a stomach ache.
I am curious now too because my brother has interesting allergies as well. He cant eat apples and cherries and celery where I can. my sister cant have cashews, where that is the only nut (as long as its not cooked in other nut oil) that I can. we all seem to have food allergies that are related but different. mine are the worst though my brothers are getting worse, and my sister has ANA reactions to bees. I wonder how related these really are?
Anyhow we don't eat any processed foods here. No soy in the house. I do all of our baking, as in make all of our bread. I use whole wheat, rye and unbleached flour already as the bleached flour has chlorine or bromine and I am allergic to the chlorine so I avoid them for the most part. I use butter not artificial stuff. and I buy raw milk.. Though I don't drink it I do use it in  cooking. I gather that isn't the wisest thing though? I make my own icecream, all my own sweets. I don't think tomatoes bother me but I only eat them cooked in things as I don't like them raw. I think I might have a problem if I eat too much salsa though. I hate that cinnamon is on this list, I take cinnamon supplements to help my blood sugar. I hope its not one of the things making me feel worse! Overall I try to use as many organically grown real foods as possible so as to have as few chemicals in our bodies. I even make my own pasta for the most part. It's tedious but I know the quality of what goes in is worth it. There is no chance of accidental exposure to something that could kill me this way. and if I do have a reaction I know what I ate. theres no surprises. I do think I am soy sensitive as when I do eat out upon occasion I dont usually feel good after and the only thing I can come up with is the soy. I personally believe the GMO foods are contributing to the allergies now days.

Thank you Joan for clarifying why leftover meat is bad. I was not happy about that because since I cook everything from scratch I don't cook 3 meals most day and DO eat leftovers.  I will be paying attention though if they bother me more on those days. I do tend to make a big batch of things and seperate them into individual portions to put away, freezing some, I guess I will freeze mine if it will help me feel better, its not too hard to thaw and reheat as opposed to just reheating. =0)