jenwic Posted May 28, 2011 Report Share Posted May 28, 2011 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? Quote Link to comment Share on other sites More sharing options...
juliegee Posted May 29, 2011 Report Share Posted May 29, 2011 Good question. Seems really similar to me AND both tend to occur concurrently with the autonomic stuff. One theory I've seen bandied about suggests that our illnesses began with a viral or bacterial infection that became chronic and drained our immune systems. The chronic drain then causes our immune systems to kick into high gear and begin attacking even benign exposures as major allergens. My labs even match this theory. When I first became sick, my white count was always high for years. Docs repeatedly wrote it off as "You must have a little cold." I didn't. Over time (years), my white count has dropped really low like into the 2's. My immunoglobulins are really low too- all indicative of an impaired immune system. And, of course, I have allergic/anaphylactoid reactions to dozens of things I'm not allergic to...If someone knows about MCS, I wonder if the MCA med regimen helps that too? If so, it seems like we are talking about the same condition- just a different name. No medical research to back ay of this up. Just my ramblings Quote Link to comment Share on other sites More sharing options...
jenwic Posted May 29, 2011 Author Report Share Posted May 29, 2011 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. Quote Link to comment Share on other sites More sharing options...
juliegee Posted May 29, 2011 Report Share Posted May 29, 2011 Yeah- he's wrong. Tryptase is elevated in mastocytsosis (Jared is our exception ), not in MCAD. At least he's barking up the MCS tree...may be the same thing. I assume he's run allergy tests, checked your IgE? Your appendix story got me thinking. My gallbladder began going flukey in my late 20's, many hospitalizations, etc. Because of imprecise testing in the dark ages, I didn't have it yanked until I was in my 40's. It was so diseased & wrapped in layers of adhesions. My surgeon even thinks it may have burst.... Kinda sounds like your story, hmmmm.Ket us know what you learn, Jen. Quote Link to comment Share on other sites More sharing options...
jenwic Posted May 29, 2011 Author Report Share Posted May 29, 2011 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. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 29, 2011 Report Share Posted May 29, 2011 I have a friend with Mastocytosis who has multiple chemical sensitivities. He's a doctor so has to have all his patients come in completely "scent free" or he has terrible reactions. From what he's told me, it's fairly common for people with mastocytosis to have this problem. Quote Link to comment Share on other sites More sharing options...
juliegee Posted May 29, 2011 Report Share Posted May 29, 2011 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.My IgE too and no allergies... Quote Link to comment Share on other sites More sharing options...
juliegee Posted May 29, 2011 Report Share Posted May 29, 2011 I have a friend with Mastocytosis who has multiple chemical sensitivities. He's a doctor so has to have all his patients come in completely "scent free" or he has terrible reactions. From what he's told me, it's fairly common for people with mastocytosis to have this problem.Hmmm. I still think we are talking semantics. Within the mast cell community- classification and diagnostic criteria is evolving. We are awaiting a consensus from the World Health Organization. Dr.Lawrence Afrin, a hemotologist and oncologist in Charlestopn, SC recently wrote an article that re-classifies mast cell disorders. He describes mastocytosis as a type of mast cell activation. http://www.jhoonline.org/content/pdf/1756-8722-4-10.pdf Could be, that's what your friend is calling MCS? When I saw Dr. Castells (mast cell researcher) in Boston- she also had signs all over the office preventing scents, etc. They are major triggers for many of us. I am the most unscented girl in the world Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 29, 2011 Report Share Posted May 29, 2011 Oh, I would love an answer to this question. MCS is such a bad symptom for me and one of the most disabling because the smells are everywhere!I'd question the antibiotic you took if the reaction started after right after that. Are you allergic to cephalosporin antibiotics or penicillin? OR I'd look at the antibiotics they gave you for the appendicitis. Quinolones can be very bad for people (don't know if they gave you any of those). I am a bit jaded because of my own history of bad reactions. I think the right medications can be very helpful, but I also think bad ones can be life altering. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 29, 2011 Report Share Posted May 29, 2011 Hmmm. I still think we are talking semantics. Within the mast cell community- classification and diagnostic criteria is evolving. We are awaiting a consensus from the World Health Organization. I suspect your friend has cutaneous masto with mast cell activation. Some with the cutaneous type do NOT go on to develop further symptoms. Dr.Lawrence Afrin, a hemotologist and oncologist in Charlestopn, SC recently wrote an article that re-classifies mast cell disorders. He describes mastocytosis WITH mast cell activation. http://www.jhoonline.org/content/pdf/1756-8722-4-10.pdf Could be, that's what your friend is calling MCS? When I saw Dr. Castells (mast cell researcher) in Boston- she also had signs all over the office preventing scents, etc. They are major triggers for many of us. I am the most unscented girl in the world I think you're right about semantics. However, my friend was diagnosed with mastocytosis by bone marrow biopsy, seen at NIH, has been on routine chemo and currently takes 14 (literally) antihistamines a day. Thanks for the article link! Quote Link to comment Share on other sites More sharing options...
juliegee Posted May 29, 2011 Report Share Posted May 29, 2011 No, no, no, Chaos- I'm certainly not questioning his mastocytosis DX- only the multiple chemical sensitivity (MCS) part. I'm wondering if that is the same thing as mast cell activation (MCA.) The article I sent suggests that mastocytosis IS a form of MCA. Quote Link to comment Share on other sites More sharing options...
juliegee Posted May 29, 2011 Report Share Posted May 29, 2011 Wow, the more I try to learn about MCS- the more I realize that there is little science behind it- more an observation of a phenomenon. The symptoms sound a lot like MCAD, but the only treatment most sites recommend is avoidance Here's a research article that suggests antihistamines help http://www.ncbi.nlm.nih.gov/pubmed/21553505 Remember Martin Pall & his NO/ONO theory ? He's written many scientific articles that link MCA to CFS/FM (essentially dysautonomia): http://www.walkuplaw.com/images/DrPall_MCS.pdfAnybody else wrapping their head around MCS? Sounds like MCAD to me Quote Link to comment Share on other sites More sharing options...
jenwic Posted May 30, 2011 Author Report Share Posted May 30, 2011 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. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 30, 2011 Report Share Posted May 30, 2011 So you're allergic to Keftab then. Maybe it (or the other AB's) triggered something. Just speculating. Quote Link to comment Share on other sites More sharing options...
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