jenwic

I have noticed that I can take some meds better if they are generic and some better if they are brand name. It must be the inactive ingredients. I am suspected of having MCAD, so this might be the reason. Claritin bothers me, but the Walmart brand of loratadine doesn't. Today I tried Zantac (brand name) and I am wheezier than usual (I have asthma) with drainage down my throat and a tight feeling in my throat. I was pretty tachy this morning, but I am better this evening. I think I will try the generic Zantac next. Hope it doesn't bother me!

Alicia, I have lots of problems with sensitivity to meds too. They cause me many problems including heart racing and pounding, shaking and tremors, nausea, weakness, insomnia, diahrea, and many more. I also have similar reactions to chemicals and foods. It has gotten a lot worse in the last year. I'm not sure there are even any antibiotics I can take now. I recently went to see Dr. Grubb and he said I probably have a mast cell disorder (MCAD). He wanted me to start taking 2 Claritin pills per day (one in morning and one at night) and after a few weeks add an H2 blocker like Pepcid or Zantac. He also wanted me to take Singulair, but I can't tolerate it. He said if I feel better on this medicine regime then I likely do have a mast cell problem. He said it can be difficult to diagnose MCAD and trying the meds and seeing if they help is a "clinical diagnosis". It might be worth a try for you to try an antihistamine like Benadryl, Claritin, Zyrtec, or Allegra and see if it helps. I can tolerate some of them better than others. Dr. Grubb even said that sometimes patients can tolerate a generic instead of the brand name or vice versa depending on what the inactive ingredients are in it. I know it is very unpleasant, but you might have to try a few before you can find one you tolerate. I hope you can find some relief soon! Jenny

The exact same thing happens to me. I avoid fillings like the plague. I have severe adrenaline rushes and tachycardia within about a minute after the injection ( without epinephrine) and then I start having shaking and tremors. This was after I took a Benadryl pill an hour before I went in. I think my dentist uses mepevicaine(sp?) to numb me. Dr. Grubb suspects I have a mast cell disorder, so since my last dental appt. I have started taking 2 Claritin per day (one in the a.m and one in the p.m.) My next step is to add an H2 blocker like Zantac and see if it helps. I am hoping that before my next filling I will be on the right meds and it will help a lot. I will probably still take 1 or 2 Benadryl pills before I go in. By the way, I am extremely sensitive to many meds and have bad episodes of tachycardia when takin most new meds. I have to start off slow with a small dose and work my way up. Hope you can find a medicine to help you! Jenny

I have a lot of problems with scents too. One thing that bothers me a lot is fabric softener. I have switched to fragrance free, but when I am in public and walk past someone who has used scented fabric softener my throat feels tight. I also have problems with shampoo. Does anyone know of a good shampoo that doesn't bother them?

Sue, The flushing you're having sounds like it could be some sort of mast cell problem (MCAD). That's one of the symptoms of it.

Dr. Grubb thinks I probably have MCAD so he is trying out some meds to see if they help me. I started taking one Claritin per day and after a short adjustment period, my body seemed fine with it. Last night I added another Claritin at night. Last night I had a lot of trouble sleeping due to being tachy. Today I was tachy throughout the day. When it's almost time for the next Clartin I start to feel pretty good, but about an hour after I take it there goes my heart again. I'm wondering if my body will adjust to this soon. Did anyone else have this problem?

JoeJack, I read an article by Dr. Afrin who is Godsgal's mast cell dr. in South Carolina. He said that with mast cell disorders a person starts off slowly by having flares and reactions occasionally but then over time the sensitivities and flares increase in intensity and happen more often. I was like that with meds as well as sensitivity to foods and chemicals. For years I believed that I only had POTS and was just more sensitive to things than the normal person. Then, within the last couple of years- Boom! Now I don't have an antibiotic that doesn't bother me in some way (wheezing, fast heart rate, adrenaline surges, tremors, bp elevated, sleeplessness). Now many foods do that too. I am trying to follow the low histamine diet which seems to help some. I am also taking Claritin which has helped some too. I went to see Dr. Grubb about a month ago and after listening to my list of complaints he believes that I have mild POTS and mild MCAD which, when put together, make me miserable. He is doing a "clinical" diagnosis of MCAD by starting me on meds, one at a time, and seeing which ones help and which ones don't. Here is a link to the article by Dr. Afrin. Check out the list of symptoms of MCAD and look at page 3 the second paragraph for the comment about how MCAD increases in symptoms over time. http://jhoonline.org/content/pdf/1756-8722-4-10.pdf

Sarah, I have taken Florinef for years, but recently Dr. Grubb increased my dose from 1 1/2 pills a day to 2. Now I am having problems with my eyelids and upper lip swelling. Do you think your swelling was due to the Florinef?

I am allergic to penicillin. I can't tolerate cephalosporins either. Unfortunately, I don't know what IV antibiotics they gave me for my appendicitus. That was in 1993.

My IgE was 56 (normal, they said). The allergy test results for peanuts was a level "0" even though I reacted so strongly to even minute amounts of it. Wow! Yeah, I'd say carrying that bad gallbladder around for so long could have triggered something. That's interesting how we had such similar backgrounds.

Very interesing! My problems all started after an undiagnosed appendicitus. The doctors all thought I had a pelvic infection since I had abdominal pain and fever, and kept putting me in the hospital and giving me strong antibiotics. Finally, after about 5 months, I had surgery to remove an ovarian cyst and guess what they found? A gangreene, abcessed appendix! Talk about having an infection. Also, when I was still carrying around the bad appendix, I got bronchitus and was given Keflex antibiotic and cough medicine with codeine. The night I started taking it was when I had my first episode with tachycardia and was taken to the ER. I also wonder if MCAD and MCS are the same or at least closely related. I'm still waiting for results on my tryptase. The hospital messed it up and I had to do it over. The urinary histamine (not methylhistamine) was normal. Catecholamines were normal. It is so hard to get a diagnosis. I told the dr. that I felt really good the day of my tests. No flares. It's frustrating. I really don't think the dr. I'm seeing completely understands MCAD. He said hardly any labs do methylhistamine tests. He also said if you have a mast cell problem your tryptase would be elevated. I know people whose tryptase was normal and later found out they do have MCAD.

I am going to an allergist who thinks I might have multiple chemical sensitivity. I have many symptoms such as extreme sensitivity to soaps, laundry fabric softeners, medications. I know that sensitivity to food additives/preservatives also goes along with this. I am very sensitive to many foods including peanuts. I'm being test for MCAD too. Are any of you familiar with multiple chemical sensitivity? How does it compare to MCAD?

Lizababy, I bought a special hypo-allergenic shampoo called free & clear that's free of fragrance, dyes, parabens, & formaldehyde. It doesn't say anything about phosphates or sulphates. What kind of shampoo do you use? I do have mild scoliosis. I never knew until my chiropractor x-rayed me and told me so. Jenny

I have been having issues with reactions to shampoos (heart rate up, weak, dizzy, bp up, headache). I am currently being tested for MCAD and figured I was reacting to some chemical or additive in the shampoos I have been using. Right now I am down to washing my hair with a bar of Sensitive Skin Dove soap. Since I've been reacting to shampoos, I've started washing my hair in the sink when I try a new shampoo so that if I react to it, it won't be all over my body. All I have to do is rewash my hair that way, not my whole body. Today I tried a new "natural" shampoo somenone on here suggested which is just baking soda mixed in water. I also used a vinegar/water rinse. I seriously doubt that the baking soda would have made me feel bad, but after washing my hair in the sink, I stared to feel weird- weak, dizzy, a little nauseated. Now I'm wondering if the actions of bending over could have caused these bad feelings. If so, how long would they last? I have pretty frequent headaches and pain in my neck where my head joins onto it on the left side.

Noreen, Thank you, Thank you!!!! I can't wait to try it. I don't mind so much about washing my hair with a bar of soap except that it gets so tangled I can hardly get a comb through it. I think I'll try this tomorrow!

I totally agree. The worst is when I am in a large group of people I don't know very well trying to think of something to talk about. Even going on a car trip with my 3 rowdy boys can give me a headache (wait a minute, I think anyone with 3 boys could say that )

I live with a fear of causing a reaction from something I eat too. So many things bother me. I also have the lump in my throat feeling a LOT. It will sometimes feel swollen and sometimes it feels very full and almost aches. I use a steroid inhaler daily and thought maybe it was thrush. They did a swab test to check for thrush once, though, and it came back negative. I can't use shampoo anymore. I have horrible reactions to it (bp up, tachy, feel faint), so I wash my hair with a bar of Dove sensitive skin soap. I can't color my hair anymore either due to bad reactions so I'm going gray. I don't have any advice, lieze, but I've been reading your posts on here for quite a while and I just want you to know you're not alone.

ramakentesh, What autoimmune disorders could have similar symptoms as MCAD? Julie, I am praying that Dr. Bernstein can correctly diagnose me too!! I have been having symptoms (POTS and others) since 1993. More recently I have added the food/med sensitivities to the list. This all started with a misdiagnosed abcessed, gangreene appendix that I carried around for months. I was in and out of the hospital getting IV antibiotics and no one could figure out what was wrong with me. Finally, one night I started taking the Keflex antibiotic and cough med with codeine that I had been prescribed (for a bad cold) and my heart started racing like crazy. I ended up in the ER thinking it was an allergic reaction. They told me it couldn't be because tachycardia wouldn't be a symptom of an allergic reaction. They tried meds to slow my heart down but they didn't work. That was the beginning of my problems. Months later during a surgery to remove an ovarian cyst (they thought that was the cause of all my pain) they discovered my bad appendix!! Hugs to all of you too for your help! Jenny

Julie, The doctor I saw was Dr. Jonathan Bernstein in Cincinnati. I found his father, Leonard, listed on the tmsforacure website as a physician. Dr. Leonard Bernstein is retired. They are both immunologist allergists. I have only been to see Dr. Jonathan Bernstein one time. I hope he knows enough to diagnose me I guess I'll find out in a week. I know it is difficult to get a diagnosis of MCAD. The bad thing is, on the days I was tested I was not symptomatic. I don't know if the regular 24 hour urine histamine test can accurately diagnose mast cell problems or not. That's what I had done. The allergy shots were not for peanuts. I wasn't even reacting to them then, that was several years ago. The shots were for grass and cats and dust (which I did test positive for an allergy to). Peanuts are indeed very hard to avoid. I have lots of well-meaning friends and family who don't understand why I am still avoiding them since I am not "allergic" to them. It's frustrating. Because of Godsgal's recommendation, I think I will ask him to do a skin biopsy when I go back. I do have some small brown freckle/mole places. I have only had hives twice in my life so I don't know if anything will shoe up, but I feel like I need to get checked. Thanks, Jenny

Mack's Mom, I have reactions to many things such as foods, medicines (I can hardly find an antibiotic that I can tolerate),hair color, shampoo, soaps, heat, stress, and many others. You may recall that I had horrible reactions when I didn't take my Florinef on time too. My reactions include tachycardia, sensation of throat swelling, shaking and tremors, hypertension, diahrea, nausea. I don't get all of these symptoms every time. Peanuts trigger all of the above but when I was tested for allergies to them it came back negative (level 0). When I took allergy shots I had huge wheal reactions to them even though the strength of them was 1/100,000 and the allergy dr. was stumped as to why. I even took Benadryl when I took the allergy shots and still had reactions. Now I am taking one Claritin per day which is helping some but I still have breakthroughs of flares. I also take Pulmicort and Rhinocort for allergies and asthma. Naomi, I will definitely ask the dr. about it. I have an appt. to see to Blair Grubb in 2 weeks for the first time. I am ready for some answers!

I wondered if the fact that I use a steroid inhaler for my asthma might have influenced the prostaglandins.

I haven't seen Dr. Bernstein yet. I called his office to see if the results were back yet. I figured that I could just look the results up on the internet, but it is not so easy. Thank you for taking the time to look up that info! I wondered if someone could use up a lot of prostaglandins during a "flare" which would make them low afterwards. I have no idea!

I think I will ask him for that test next so I will have it on hand next time I have a flare up. When I did the 24 hour histamine I felt really good that day.

It was histamine. I asked him about the methylhistamine and he said that hardly any labs do that one anymore. I don't know if the urine histamine would be able to diagnose MCAD or not. I hope so.

I recently took several tests to see if I have MCAD. I called the dr. today to get the results and now that I have them, I am confused. My prostaglandin F2 was low- 123 (normal is 250-400). My 24 hour urine histamine was normal. My urine catecholamines were normal but the urine epinephrine was "undefined" The 5HIAA test was not performed because the ph level was less than the allowable range. The results for the tryptase are not back yet. Can anyone shed some light on this for me? Thanks!!