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multiple chemical sensitivity (Read 13425 times)
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multiple chemical sensitivity
07/23/13 at 05:12:03
 
i know that chemical sensitivity causes mast cell reactions. I have all similar reactions as someone with MCAS in fact have been diagnosed with MCAS by my allergist.(someone recommended by Dr. Afrin) but i have a lowered immune system which is indicative of multiple chemical sensitivity. We become sensitive to everything that we eat alot of and are very sensitive to medicines. I am being treated by a doctor that does MCS and have been helped but am now getting worse. Can anyone add their expertise to this subject? thanks
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Susan
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Re: multiple chemical sensitivity
Reply #1 - 07/23/13 at 13:27:13
 
I have been diagnosed with multiple chemical sensitivity for many years, and only diagnosed with mastocytosis in 2011. So far, treatment for mastocytosis has helped me more than any treatment fro MCS, except for strict avoidance. I don't see any reason why there would be a conflict in treatment.

Are you on a regular program of H1 and H2 antihistamines? Have you tried cromolyn or ketotifen? Anything else? I couldn't believe how many long term symptoms improved or resolved on regular mastocytosis treatment.
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
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Bruce Hart
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Re: multiple chemical sensitivity
Reply #2 - 07/24/13 at 23:47:15
 
I used to call my disease multiple chemical sensitivity for 10 years until I learned of mast cell activation diseases just a year ago.

MCS doctors use a lot of quackery. I'm skeptical of anything involving them. I don't trust their tests and/or their interpretation of tests, and definitely not their treatments. It's easy to waste a lot of time, money & health on them.

When MCS was defined they were unaware of mast cell activation diseases (MCADs). Also nearly everyone involved in MCS are unaware of MCADs otherwise they would recommend getting tested for MCADs. So I don't think we have any good reason to believe at this time that there is another chemical sensitivity disease exactly like MCADs but with an unknown mechanism which we would call MCS. I think most cases of MCS are really MCADs and other already known diseases and some cases are just misdiagnoses by quack doctors of people who don't even have chemical intolerances at all.

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Re: multiple chemical sensitivity
Reply #3 - 10/01/13 at 16:48:21
 
My house flooded and during the repair they used many plastics which offgassed into my home and now I cannot be near it without anaphylaxis

I get anaphylaxis in all hotels etc due to the cleaners detergents etc

So am living in my car, trying to keep breathing and praying i will get back in my house or some other shelter

Thought this was pertinent info for the chemical sensitivity thread
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Bruce Hart
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Re: multiple chemical sensitivity
Reply #4 - 10/10/13 at 10:49:31
 
That's terrible Anaphylaxing. Did this happen recently? I can't go into my home either except for the garage which is sealed off from the house. I didn't even tolerate the garage for over a year though.

These MCADs are some of the few diseases that can make you non-financially homeless. It's insane what we have to go through.



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Re: multiple chemical sensitivity
Reply #5 - 10/11/13 at 22:57:53
 
THanks Bruce

Have thought of you a lot. Was eyeing up a family's garage, but as you said exhaust and diesel fumes ARgh

lived in the car for two weeks but right now trying a room in a scented house with 3 hepa filters running until I can maybe find another place which is likely an impossibility

The most difficult part is during the struggle of homelessness, the accusations of mental illness have skyrocketed. My sensitivities haven't changed and it's what I was dealing with day to day at home, but now that I've become more of a burden I guess people like to question it all. Seems like the worst time to do so to me :S

Any progress for you lately?
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Bruce Hart
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Re: multiple chemical sensitivity
Reply #6 - 10/26/13 at 17:25:52
 
Yeah the hardest part for me was the disbelief that my disease was real too. That's why I'm disabled now because I didn't get the accommodation when I was a lot better and able to work. Though my mom believes me and helps me a lot now.

I did became less sensitive for a while but had some setbacks from major exposures but I'm making progress again.

I'm really loving the dye free Benadryl. It seems to help me quite a bit with my main symptoms which is head pressure and brain fog. It's also an excellent sleep aid and so I feel better from getting more sleep.

Though the best thing is the Benadryl seems to be helping to keep me from getting more sensitive from triggers because despite being exposed to a lot more triggers for the past few months, for most of that time I was still becoming less sensitive which before when I was unmedicated I would expect those frequent exposures to make me much more sensitive.

So I researched it and I think the main reason is that histamine upregulates H1 receptors and blocking it with H1 anti-histamines reduces that upregulation and even downregulates them below basal level. So it makes sense that it would provide some protection against becoming more sensitive from triggers.

Though another thing that can make us more sensitive from triggers is more mast cells and other immune cells getting signaled to recruit to the area of the reaction. So having more mast cells accumulate in our problem areas can of course cause stronger reactions to later triggers.
I want to treat this aspect too soon so I think I'll try a Quercetin supplement which reduces release of some mediators that signal for more mast cells and other immune cells to recruit to the reaction site.

I take Zyrtec tablets twice a day too and I think they help a little, but Benadryl is the one that really helps at least with my particular symptoms of head pressure and brain fog which I presume is because Benadryl can cross the blood brain barrier a lot better than Zyrtec.

What meds are you taking now and do they help significantly? If you haven't tried Benadryl I think you really should give it a try. Since I don't seem to tolerate the gelatin capsules I bust open the benadryl in my mouth after I have a little water ready in my mouth, then spit the capsule out. Then I take only a few drinks of water. I think maybe some Benadryl is sublingually absorbed too because it seems to start working pretty fast for me.

I hope your situation improves soon. It's getting cold here and I've been freezing just in my boxers. Hopefully I can get some clothes and covers tolerable for me soon. I got some new clothes washed 4 times and rinsed well, but I still haven't tested them yet because I really need a break from exposures for a few days at least before I risk it.
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Re: multiple chemical sensitivity
Reply #7 - 10/26/13 at 18:39:04
 
I'm SO glad to hear you are improving.

My housing situation is a mess!

Yes I've used Benadryl for rescue since the beginning and the dye free is my preference. I don't use it every day as "they" say it is more prone to side effects from chronic use as well as resistance and with it being my rescue med for anaphylaxis I don't want to mess with that. I've been on every antihistamine and mast cell stabilizer under the sun with the exception of Quercetin. I was on all of them at once for two years and am actually feeling better as I try to get off of them gradually. Still on daily zantac, cetirizine, ketotifen, singulair. Had to stop cromolyn while homeless as it's too high maintenance.

not much time to post but will be back around when my living situation stabilizes. Hopefully soon. Hope your improvements continue!!

Smiley)
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