Fw: Hope this information will help others ~ Chemical Damage -- MCS-- Do You Have ?

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----- Original Message -----

From: " Bev Ezra (by way of ilena rose) " <bjezra@...>

<Recipient List Suppressed:;>

Sent: Wednesday, March 27, 2002 4:36 PM

Subject: Hope this information will help others ~ Chemical Damage -- MCS--

Do You Have ?

> Do you know who or where I can get help for MCS? I have had a lot of

> tests in the last nine years. I have severe Multiple Chemical

Sensitivity

> in small amounts of every day chemicals.

> I need surgery, left saline implant partially deflated , since August

2000.

>

> My insurance is Medicare and secondary.

>

> Total disability 1995 " under the Social Security act are silicone breast

> implant ruptures and silicone toxicity "

>

> Medication, vitamins, minerals, herbs, gamma gobulin, B-12 & B-complex

> shots, as I have a reaction to medicine (chemicals).

>

> I have called Medicare, they researched my file, called me back in about

> three weeks and said the test I would need before surgery (anesthetic,

> antibiotics, different chemials) are classed as experimental and would

> not pay for them. I requested this information to be put in writing and

> sent to me. No reply.

>

> I sent letters to the President, Vice President, Senators,

> Representatives, a few did acknowledge they received the letter. I

> contacted the office of the Governor Consumer Health Assistance. I sent in

> the papers they had me to fill out. They called and told me to send a

> letter to the doctors asking for detailed list of tests they would need

> to do. I sent the letter to five doctors, one reply. I called the State

> Health Insurance program, they can only help me with appeals, bills

> Medicare won't pay for. I have requested the information in writing

> that they tell me on the telephone, no reply.

>

> My allergist told me not to come back because I have an attack everytime,

> before I can even get my shot, >from the people, building, cleaning

> supplies or ???. The last attack I had in her office was like a heart

> attack, it lasted for five days (chest pains and left arm numb) I called

> her everyday to report. I ask for documentation of this in writing to put

> in my file.

>

> When I moved over five years ago , I called , seen, talked to, or faxed

> over 70 doctors. They said I'm not qualified, give referral, finally one

> said I don't know how to help you but I'll do what I can , later she said

> " I'm in way over my head on this one " . On my last visit I ask her what

she

> could do if I had an accident, fall or vehicle. Answer " there is noplace

I

> can take you, because of the chemicals " . There is no hospital or surgery

> center that MCS people can go to, here or even close.

>

> Now I have bacteria >from rupture saline implants going into my body

> everyday and I can't get help.

>

> The letter I sent to the FDA I put on Ilena Rosenthals support group

> website. I got several replys that said they were like me but did not

know

> it was MCS.

>

> I've called just about every clinic that the American Academy of

> Environmental Medican Wichita Kansas sent me. All were very nice, give

me

> information and referrals over the telephone, fax, or mail. Some I

called

> only worked with with Gulf War , VA, or research but would give me

> referrals.

>

> CDC Atlanta Ga said no help for MCS right now, working on it. Fred

> MI said " it is like a broken record " he had talked to over 2500 of

> us in 1999 like me. Vasey FL had between 50 and a 100 like me out

of

> a 1000 that he was treating at that time. Wm Rea TX has a lot like me.

> Micheal Harbut MI has a lot like me. Arthur Brawer NJ has seen a lot

like

> me, told me to buy his book. Fred FDA said " the squeaky door gets

> the attention first " , contact senators, representatives and so on, I

> did. .S. sent me a lot of information and told me to buy

> their book ( Ashford) Chemical Exposures second edition.

> Shanklin TN did blood test. Middleton CA did MRI. Gunnar

> Heuser CA did Spect scan, blood test and other test. TX

> has a lot like me. I talked to a lot of them that could not help me or

> know what to do for me. Strart MC Curdy Medical School Sacramento

> CA, National Jewish Center, Washington DC Environmental Clinic, NIH

> Bethesda land, Medicare, University of Utah, University of UCSF.

>

> I will be grateful for any help or information that you can give me.

>

> Bev

>

>

> ~~~~~~~~~~~~~~~~~~~~~~

>

> Multiple Chemical Sensitivity

>

> I hope this information will help someone to understand what is wrong

with

> them. It took me about eight years of tests to find out for sure that I

> had MCS, now severe. I have just about all of the (Do you have) ~~ I

> have ALL (How it Affects you) I also have right shoulder tearing of the

> supraspinatus tendon MRI -1998 ( left hurts just as bad now ) Another

> tooth just broke a couple days ago, now to find a dentist that will work

> on me or that I can afford. List that affects me ~ I can't smell so just

> have to go with what people tell me and when it happens several times

> (different people) I add to my list (sometimes test the product myself or

> by accident).

>

> Most people don't want to be around me ( could die) some of the attacks

> are hard to watch for anyone, elderly and children have a diffcult time,

> embarrassing for most. I offend or hurt feelings if I ask what they have

> on to try and find out why I'm having the attack. Demeral, aspirin,

> novacain, dental gas, pesticides, cortisone, predisone, albuteral, oil of

> olay, mary kay, jergens lotions, new skin, sara michales fressia, white

> diamonds, opium, black pearls, stetson, old spice, mennens, calalyst,

> clairal herbal essence products, body washs, hair spray, deodorants, bath

> soaps, 409, shower shine, scrubbing bubbles, pine sol, joy, loc, wd40,

> some paint, carpet shampoo, and the list goes on. Depends on the

chemical

> as to what happens to the body, and the memory.

>

> All affect the central nervous system for me ( walking ability), I just

> start shaking and I know enough to get away. Some make very sleepy (used

> to sleep for days ~18 to 20 hours 3 to 5 days in a row ~ over two years

> almost three ) Found out it was due mostly to pesticides and moved.

> Allergy test show allergic to everything. I detox everyday and have for

> years but I can't get the implants out. Been trying for seven years now,

> maybe more. The most important thing to remember ~ Do Not ~ tense

> up, just stay relaxed (calm) ~ you can't work against yourself when

having

> an attack. I don't like the ones that affect my lungs ( turn gray -

they

> tell me), heart or throat constricted. Albuteral ~ makes everything in my

> body go out of control, it looks like I have thousands of mexican jumping

> beans inside me every inch, affects lungs ( turn gray), throat, walking (

> one step forward and three back), feet flip up about waist high and don't

> want to go back down, whole body shakes, talking, everything goes

haywire.

> Pesticides ~ lungs (turn gray), throat, walking, almost shuts the whole

> body down. Three time now I didn't think I was going to come out of it. I

> hurt ( every part of the body) for days after the attack. 409 ~ lungs (

> turn gray), throat. I do not know what makes me lose my voice from 5 to

19

> hours at a time. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> Most people don't know they have MCS

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> ADD TO ANY OF THE LISTS ~~~~~~~~~~~~~~~~~~~~~

>

> Do you have ~~~~~~~~~ arthritis___ dental problems___ hair loss___

> seizures___ attacks___ asthma___ allergies___ loss of taste___ loss of

> smell___ myelin sheath damage___ T cells abnormal___ immune

dystunction___

> autoimmune disorder___ MS___ CFS___ FM___ TMJ___ cancer___ lupus___

> connective tissue___ neurological___ memory loss___ irregular heart

> beat___ OR ?___ Yes or No

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

REACTIONS

> TO CHEMICALS. HOW IT AFFECTS YOU. Yes (Y) or No (N) BE SPECIFIC ABOUT

> YOUR PHYSICAL REACTION. Mild (M) Moderate (MO) Severe (S)

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> resiratory (shortness of breath) ___ spasms of esophagus( throat

> constricted) ___ eyes ___ blurred vision ___ neurological ___ short

term

> memory loss ___ disorientation ___ dizziness ___ headaches ___ migraines

> ___ central nervous system ___ whole body jumping and jerking ___ feet

> flipping out of control ___ pain___ (where) head ___ neck ___ spine ___

> chest ___ slurred speech ___ nausea ___ hives ___ numbness___ ( where)

> whole body ___ arms ___ legs ___ face ___ numb as if having a stroke

> ___ loose muscle control ___ spastic bowel ___ irregular heart beat___

> (pluse racing or decreasing) ___ whole body immobile can not move ___

> walk ___ talk ___ but know what is going on around you___ sleeping spells

> ___ drowsiness ___ incoordination ___ digestive problems ___ loss of

voice

> ___ laryngitis ___ sinus ___ rhinitis ___ whole body swell ___ feet

swell

> ___ legs swell ___ hands swell ___

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ NAME

> BRAND AND MANUFACTURE OF PRODUCTS THAT AFFECT YOU. NAME THE PRODUCTS ON A

> SEPARATE PAPER .

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ food

___

> beverage ___ msg ___ artificial sweetners ___ equal ___ nutrasweet

> ___ medicine ___ antibiotics ___ anesthetic ___ inhalers___ perfume ___

> cologne ___ after shave ___ fragrances ___ cleaning & laundry products

___

> detergent___ fabric softner___ chlorine bleach ___ dish soap ___ what

> ?____ beauty & bath supplys ___ cosmetics ___ eyebrow ___ eyelash ___

> eyeliner ___ eyeshadow___ lipstick___ makeup base___ powder___ blusher___

> mascara___ deodorant___ handlotion___ suntan lotion ___ sunscreen ___ bar

> soap ___ body wash ___ liquid soap ___ toothpaste ___ mouthwash ___ nail

> polish ___ remover ___ alcolhol ___ shampoo ___ conditioner ___

hairspray

> ___ coloring ___ What?___ Paint ___ lacquer ___ varnish ___ enamel ___

> paint remover___ gasoline ___ vehicle fumes ___ pesticide ___ insect

> repellent ___ dry cleaning ___ latex ___ glue ___ ink ___ dental fillings

> ___ dental cement ___ clothing ___ home____ carpet ___ drapes ___ blinds

> ___ vinyl ___ plaster ___ upholstery___ insulation ___ foam rubber ___

> mold ___ work place ___ sick building ___ or what ?___

>

>