posted
Hi, since I have had Lyme, I notice my symptoms get much worse in the grocery store, copy shops, and some new construction. When I am in the grocery store I have to hurry bc I get VERY brain fogged and feel terrible like I have to rush out. Why does this happen? Will this eventually go away? I was never reactive to any environment pre-LYME. Thanks. Jenny
Posts: 63 | From Clarkston, MI | Registered: Sep 2008
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posted
Hi Jenny, I have the same problem when I walk into the grocery store or dept store, but I never really thought about chemical sensitivity. I get really bad brain fog and get very clumsy - strange?! And I thought it was me! Does anybody else experience this or know what might cause it? Thanks Char
Posts: 262 | From ohio | Registered: Jul 2008
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bettyg
Unregistered
posted
a large majority of us suffer from this; i have somethign in my newbie package addressing this and others joined in to tell about their expereicnes and suggestions helping them.
for 5 years i couldn't go into a grocery store; out of the blue, it got better where it doesn't affect me unless i'm by someone wearing perfume/after shave or smokers...smell on their clothes.
suggest you have one of those masks to cover your face when you encounter that.
copiers are terrible. friend with mcs and i were in an elevator and smells of copier INK got in elevator and was turtle speed; we almost passed out!! i got off at a floor and walked down. then we complained to where it was coming from.
posted
I have MSC. I had one hopeful med experience: when I started on clindamycin abx, my sensitivity to chemical smells decreased a bit.
Posts: 13117 | From San Francisco | Registered: May 2006
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
YES YES YES and another SCREEAMIING YES!!!!!!!!!!!!!
I used to get this with cigarettes, then with mold. I would get accompanying vertigo.
Now when I started taking the BIAXIN for lyme after the some herxes and chemical exposures I have this chronically.
Its very depressing.
Do a search if you want because I am sick of talking about it. Im so depressed because of it.
Posts: 2905 | From New England | Registered: Sep 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I believe MCS for me was caused by toxicity. The lyme toxin creates toxins that some of us can't easily get rid of. The more toxins, the more chemically sensitive I become.
I noticed my first major breakthrough with chemical sensitivity when I went on the guaifenesin protocol for fibromyalgia. I personally believe it was detoxification that cured my MCS.
Now, sometimes when I start a new abx and have very heavy herxing it will come back. When that happens I increase detox protocols.
I think an infared sauna could be a big help for some people with MCS.
Terry I am not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I have done chlorella, welchol, tried CSM, saunas.
Saunas make me feel better because of endorphin releases and heat shock proteins that are released.
I used to go all the time about 6 years ago. At that time I was on Biaxin and I was doing saunas daily.
The Biaxin wasnt causing vertigo any more but then the gym replaced the wood in the sauna with PVC mats and my vertigo came back %100.
That lasted about 2 weeks and then I took some Fenugreek. The vertigo went away.
After I went away I did something stupid. I put some citronella oil in a potpourii pot and turned it on. I went away from the room I had it in and noticed that it smelled very strong.
I came into the room and lifted the lid and BAM!!!!!!!
Everything came back. All the vertigo, ear pain, dry irritated nose, post nasal drip.;
I HAVE NEVER BEEN THE SAME SINCE!!!!!!!!!!
I went off the Biaxin after that incident for the summer and nothing worked. I still had it and I felt worse with my Lyme.
I layed in bed every single day that summer with dark shades because I was so depressed.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Terry, do you know if the guai treatment is only for folks with fibro symptoms?
May I ask what dosage you took, how long you took it for, whther it was tolerable while you were doing it, how long it took before you could tell it was making a difference, and how long you took it for?
And did the reduced MCS impact last for a while afterwards?
Also, since it's a protocol, I vaguely remember there is something we're not supposed to take while doing it.
Thx - Robin
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Well, I see I'm not alone. Yes, I have MCS issues as well, plus issues with light, sound, and the list goes on. I think part of the issue with grocery stores and the like is that my body and mind is disturbed by the frequency vibration of the fluorescent lights.
Dark glasses, stay in quiet places, can't go to a restaurant, can't go to most any store. And definitely can't be anywhere near anyone with perfumes. I even have trouble pumping gas because of the fumes.
These issues tend to be worse when I generally feel worse, like when herxing. I assume most of the problem will go away as I cure the lyme, but am not sure it ever will 100%, as I've always gotten headaches and burning eyes from perfumes, etc., even before the lyme.
posted
There has got to be a way to cure this. None of us has had this pre-Lyme, right?
I am taking a liver detox vitamin my internal med Dr. suggested and it does seem to make environments that are unfriendly a bit better.
I think there are toxins in our bodies from the lyme bacteria and we need to get them out. We should not have to live like this! If anyone is not cured of MCS please share with us!
Posts: 63 | From Clarkston, MI | Registered: Sep 2008
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posted
I got bad MCS after being exposed to mold a few years ago (on top of already having lyme)
It's much better than it used to be - I have eliminated all toxic products from my house as much as possible (cleaners, beauty products etc) and am very very careful about the food I eat
My LLMD has also focused a lot on detox and that has helped too
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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