I had well over a year of light sensitivity so bad that I couldn't leave the house, and had all my windows blacked out (they still are). I couldn't even open the front door without very bad eye and neuro problems for several days following. I couldn't use a computer or look at television.
The thing that helped me pull out of this mess was daily shots of methyl B-12, at 25 mg. Immediately the light sensitivity dropped off by about 50%. This past summer, after about six months of MB-12 shots, I gradually pushed myself to go outside. It wasn't easy. I started by sitting in a room with the blinds open, then after a time went outside for about thirty seconds, then a minute, etc.
I built up the time each day, and soon I was taking off my sunglasses, then rolling up my sleeves. By the end of the summer I was sitting in shorts with my shirt off and I had a tan for the first time in years. I "herxed" (or something) a lot from the sun exposure at first, then, later, it made me feel much better. Also, my body temp each afternoon went up to anywhere from 99.4 to 100.3. This after years being stuck in the 96-97 range.
The Noir glasses, in retrospect, made the light sensitivity much worse.
My sound sensitivity has come and gone, but it never approached the light sensitivity.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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bettyg
Unregistered
posted
no more muscles,
thanks for all your personal experiences what you learned on your own!
i also had 2 months of b12 shots; painful; and they did NOT help me at all.
noir sunglasses made it worse for you! that is really puzzling on that one.
glad you made significant strides in dealing with these things and for sharing them here for all to read!
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posted
Light/Sound/MCS/Startle/ and Vibrations *************************************** Robin, I've not investigated Mangosteen, but I will now.
Carol in PA ~ TU for Tincups post. Pink tinted glasses for me.
AliG ~ My sister uses Lavendar for skitters in the Bend Oregon area.
Betty ~ T U for this post!
Ticking clocks tick me off. Fridge has a special Kill switch now. Dishwasher only runs when I go to my cave. Washer/Dryer operate in A.M. when I go walking. I wear ear plugs & sometimes mask to walk + sunglasses. Only Borax worked for MCS for months. -- It's harsh on fabrics though.
Water fountains inside and outside - turned off. Florescent bulbs replaced in home to old fashioned bulbs. No more hair dye, perms, hairspray, deodorant, lotions - I use coconut products on my skin & lips
I tested too high on Beauty products for my head per the QXCI. So will soon switch to more earthy, safer product.
No more swimming pools, hot tubs unless we buy our own Not tub and use Food Grade Hydrogen Peroxide in it.
Daytime - nap with eye mast + ear plugs if noisy - Been using ear plugs for 10 years now - Gift from hubby - Bose Noise Cancelers (helps in car/airplane) Blinds pulled in daytime to use computer. Tinted glasses while at computer (now I want pink ones) I don't stay at relatives anymore & certainly not in hotels - worried about bedbugs, noise, smells, etc.
Separate Water filter on shower head Hubby used to leave dry cleaning in garage. - After reviewing a DVD from Detoxamin, I hope he stops taking his clothes to drycleaner - we absorb poisons into our skin.
At my worst, I used a drop of tea tree oil under my nose in order to give our cat that stinky canned food she loves.
Bleach, gasoline, paints, varnishes, all perfumes, hair products are my worst still, but I can handle more chemicals than 1 year ago. Thought I was going to die Feb. 2008.
Like Robin, I have Bb, but only Brucella other than Candida and Viruses - oh yes Dr. F's new bug did test positive for me.
Vibrations from my own voice used to keep me mute for days. Now vibrations from vehicles keep me home. It makes my ears/head ring & buzz more loudly. Ear plug go with me everywhere.
Medical mask goes with me to grocery store, when I can handle the car vibrations.
Posts: 212 | From Arizona | Registered: Jul 2008
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posted
Light & noise sensitivity hear, at times very severe resulting in having to wear very dark wraparound sunglasses indoors....AND earplugs. I also have noise cancelling headphones for the really bad days.
I always wear earplugs to bed which helps "some" with light sleeping wake up noises.
Summer time light is the worse. We use a special darkening film on the vehicle windows in order to get me to doctor appts.
I also use large billed hats that help shade my sunglass eyes. I look like something off a cartoon Iam sure, but hey it works.
At night we make sure all the blinds are down and shut the bedroom door...anything and everything to darken the room as much as possible. And, I sleep with a room darkening mask on top of all that.
It is a lovely sight to behold. My poor hubby.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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bettyg
Unregistered
posted
grace and jam,
thank you for sharing all you do to COPE with these disgusting side effects of lyme!
best wishes to you both on sharing so much of the same PAIN from having these extra sensitivities.
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If you have chemical sensitivities, check out http://www.environmentalmedicineinfo.com. The one page flyer has a lot of tips. Written by a md who has multiple chemical sensitivities.
Anyone know if the mcs goes away if you get rid of lyme? Would love to hear success stories! THX.
Posts: 70 | From U.S.A. | Registered: Dec 2008
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posted
Me too - I'd also like to hear if mcs went down considerably for anyone who treated Lyme.
I noticed when I first started clindamycin that it significantly reduced my sensitivity to smells. I found myself standing next to a smoker and not jumping away. Not that that's a good idea to stand next to cigarette smoke, but still, I was impressed!
But this effect has not continued, even tho I'm still taking the clinda. I can no longer stand next to smokers or much of anything with a smell.
Additional question for this mcs site: I am reacting to fabric with itching and hives and can only wear a few of my old clothes, washing them in hot water.
Does anyone have this kind of sensitivity, and if so, what have you done at all to reverse it? I would imagine this is liver stuff. I am awaiting results from a fancy liver bloodtest I recently had.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Clothing has a lot of chemicals including dyes, formaldehyde for wrinkle resistance, disinfectants, etc.
Sometimes airing the clothes in hot sun for days/weeks and washing in hot water w/baking soda and non-fragrance detergent like Seventh Generation (never use fraganced laundry products-kiss of death!) multiple times removes enough of the chemicals to make them tolerable.
Posts: 70 | From U.S.A. | Registered: Dec 2008
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Don't use Regular Seventh Generation, you can try Delicate Care. Regular is made with enzymes, and anybody with mold allergies is allergic to the enzymes which are bioengineered from a bacillus and have a protein coating similar to mold according to Jeffrey May (a healthy home expert).
I use Biokleen--very nice for me.
I use Real Purity makeup foundation--very tolerable. I use an unscented lip gloss. And eyebrow liner. No more mascara, even from Hauschka or a good brand, makes my eyes water. So does Real Purity eyeshadow powder and I need to do a little research, I suspect a cream powder that is natural would be okay.
Fabrics: I can't get thrift shop clothes anymore which in NYC I used to love to do as upper east side thriftshops had fabulous high end clothes for cheap from very wealthy folks. But they often had dry cleaning residues, perfume residues, and sometimes mold residues from where they were stored, all mixing together. Uggggg.
I get good cotton, linen, wool and silk clothing. I try to get washable clothing so I can keep it clean and it doesn't absorb odors from everywhere. I air dry my clothes on racks as everybody uses Bounce dryer sheets in my building and ruins the dryers for me. I can't use public washers because the same people put SO MUCH scented detergent and liquid fabric softener in, which ultimately sticks to the drum and coats it and gets into my clothes. Ugggg again.
I am sensitive to new appliances more so than before maybe they're all made in China now with toxic cheap materials. I had my bf and my doormen offgas my new quartz space heater for several weeks, and I got a used good condition portable a/c, and so on. I often purchase used but sometimes it has scents from the people who used it as if the stuff was stored next to a Glade plugin . Again, uggg. What are they thinking? These scents are chemical and bad for us.
Honestly, I got a crockpot/slow cooker off ebay and the thing smelled like cheap perfume and I couldn't wash it off with bleach solution or softscrub or anything and I finally threw it out. I got another and it was fine. I ordered natural beeswax candles and they came smelling like aromatherapy candles that made my eyes water and nose start running. I guess since they're all made in the same factory room they absorb the aromatherapy oils anyway, or maybe they're also all stored together and stacked together. Sent them back.
Sometimes I've returned a set of napkins or a box of rice because the entire thing was drenched in the odor of scented detergents. GROSS. This never used to be this bad.
The MCS drives me a bit nuts but oddly it is sort of erratic or inconsistent. I get my hair colored and that's fine, I bring my own Framesi and my own shampoo unscented, because the salon shampoo which is scented almond makes me GAG.
I don't have light sensitivity thank god.
I do have noise sensitivity and my bf seems to secretly think it is one of my burdensome eccentricities and I was born with the ears of a dog. LOL but sometimes not. I sent him this thread yesterday. If I'm in the bedroom and he's in the livingroom eating potato chips out of the bag I can't stand the sound. Unfortunately he has to be reminded again and again, to put stuff into a BOWL and not eat nuts or potato chips out of the crinkly crackly bag they came in.
However maybe I do have the ears of a dog who knows. When I was little I could go in department stores and hear the alarm system, which apparently is unusual for humans.
I think the MCS is a cominbation of liver being overburdened by biotoxins, AND glutamate upregulation from the bugs.
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that is really puzzling on that one.![[Smile]](smile.gif)
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. Again, uggg. What are they thinking? These scents are chemical and bad for us. 
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