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That sounds like a Thyroid problem--a deficiency of Thyroid..  Have you been
tested
lately?



--- In fibromyalgiaandmyofacial@yahoogroups.com, Terry <terrywindowman@...>
wrote:
>
> Is anybody else out there freezing in hot weather?
>
>   Sometimes just eating makes me frozen, even if the food is hot...Anybody
else?
>
>   Something is wrong with my body temperature and it's not my thyroid.
>   I dropped from 98.6 to 97.3 normal temp now. It is so severe almost
hypothermic.
>
>   Anybody have any comments?
>
>   I'm talking cold, frozen, even coats dont warm me.
>
>   Is is a part of the brain not working properly?
>
>   ...also is it ok to drink water with real lemon in it?
>   Someone said it helps your liver, but I do have MCS and don't know if this
would help
or hurt.
>
>   Thanks
>   Terry
>
>
> ---------------------------------
> Do you Yahoo!?
>  Get on board. You're invited to try the new Yahoo! Mail.
>
> [Non-text portions of this message have been removed]
>

The lack of oxygen to the brain would be, probably, low blood pressure, or a
condition
when your blood pressure is normal when you are seated, and drops dramatically
when
you stand.  Have you had such a test?  Are you often dehydrated?  Plenty of
water helps
the blood volume keep up to normal.  The more blood you have, the better it can
pump all
the way up to the brain.


-- In fibromyalgiaandmyofacial@yahoogroups.com, Terry <terrywindowman@...>
wrote:
>
> Hi this is Terry,
>
>   Would any of you know if you get blood flow problems, I mean not enough
blood flow
to the brain or low oxygen in blood?
>
>   My oxygen level with the finger monitor is around 90 yet of course I can't
breath from
the MCS yet they think I'm getting plenty of oxygen.
>
>   A neurologist told me it seems that I'm not getting enough oxygen to the
brain but he
doesn't know why.
>
>   I also get angina pain the more I exert which is barely any, and especially
around odors
is the worst.
>
>   My liver panels are ok, does this even mean anything with MCS?
>
>   I feel very toxic and am having many physical problems, kidneys, pale stool,
red spots
popping up called "petechiae" which is a sign of bad circulation or clotting and
also from
toxicity which could be liver or kidney problem or who knows.
>
>   Can liver tests be normal with MCS?
>
>   Or is it completely undetectable?
>
>   Can you be toxic where medical doctors can't find it until it's too serious?
>
>   For 2 years since this started I can't stand up without feeling like no
blood or oxygen is
going to my head, which has progressed.
>   Low oxygen to the  system starts shutting everything down.
>
>   Anybody had any experience with oxygen problem?  Or when standing?
>
>   Any problems to any or all questions would be greatly appreciated...
>
>   Thanks
>   Terry
>
>
>
> ---------------------------------
> Stay in the know. Pulse on the new Yahoo.com.  Check it out.
>
> [Non-text portions of this message have been removed]
>

I wish to join your group.

Terry,

I "feel your pain"--no pun intended on a couple on your list.  I was diagnosed
with TMJD in
1980.  A trip to the Mayo Clinic (after 24 years of treatment for TMJD)
confirmed that I
never had TMJD, I had Fibromyalgia.  I also have sinus problems, due to
life-long allergies
and migraines.  Here is what we have in common, and my interpretations:

1) Loss of appetitie:   I often have times when nothing in the world sounds good
to eat.  I
survive on protein shakes during these times.

2)  Some foods taste metallic, and I often smell a metallic smell when there is
no metal
around when a migraine is coming on.  By the way, did you know that you can have
migraines WITHOUT the headache?  I was diagnosed with migraines when I was 12,
based
on periodic numbness in my hands, blurred vision, sensitivity to light and
sound, etc. but
did not have severe pain.  The headaches started when I was 20, along with the
nausea
and vomiting.  When I awake with severe nausea, it usually indicates I will have
a migraine
in the next 30 minutes.

3)  Yes, the indentations from my socks hurt, and take forever to go away.  I
usually wear
athletic-type socks with just an inch above the shoe to minimize this.  It seems
to be the
lower leg, not the ankle that affects me. (Since I teach kindergarten and spend
a lot of time
on the floor with the kids,  I wear althletic shoes most days.)

4)Wrinkled skin:    I recently lost about 12 pounds (on a 5'4" frame and a
routine weight of
105) due to a motherload of stress at work and my stomach looks like ripples of
sand in
the dessert.  I am 47, which is part of it, I suppose, but I have no wrinkles or
loose skin
anywhere else.  I am attempting to regain the weight in the next 2 weeks, if my
stomach
problems will let me

5)  I don't cross my legs often, but sitting in a church pew kills my back and I
have to put a
pillow between my knees at night when I sleep on my side, since the knee bones
hurt
when they lay one on top of the other.

6) Huring hair:   I often have headaches so severe my hair hurts and I don't
want even a
breeze to touch it.  I believe it is the severe inflammation of the trigger
points associated
with fibromyalgia.  As much as it hurts at first, ice packs will work, by
reducing the
inflammation.  (No more than 30 minutes at a time, lay off 30-45 min., then
repeat the ice
pack.)  I recommend the gel ice packs--much more moldable to the "bumpiness" of
the
face than a bag of ice cubes.

7)  At times, my head and the trigger points around my temples/face/ears are so
painful,
anything touching my ear would hurt. My ear hurts whe I sleep on my side.
  I do not think ear wax is related to Fibromyalgia.  My father had trouble with
overproduction of ear wax most of his adult life. The first time it affected his
hearing, he
went to the doctor.  After that, he used over-the-counter kits for softening and
removing
the wax.  A nurse who cared for him when he became a invalid later in life
(Parkinson's
Disease) told me some people are "waxers" and some aren't.  Also, ear wax and
its
production has nothing to do with sinuses.  Sinus drainage comes from your sinus
cavities
and is flem.

8)  If your ears feel and sound like they are percolating, you may have sinus
drainage, or
water caught by the shower (which can be dried out with Swimmer's ear drops. 
You may
have pressure on the eustatian tube from neck/ear/face pain from trigger points,
also.

9)  I often have head pain on the top of my head--as if someone had hit me with
a board.
My doctor and physical/massage  therapist tell me this is referred pain from
other trigger
points in the head and especially the neck.   (Let me know if you don't know the
difference
between actual pain sites and referred pain sites.)

10)  I'm wondering if your lack of balance is your lack of physical toning of
the muscles--
weak muscles do not support your body weight effectively.  Also, you may have
blood
pressure problems, causing a balance problem.  I do Pilates with a personal
trainer to
strengthen muscles and improve balance.  This has helped a lot, though any
exercise is
not comfortable, I try to look past the pain for the general benefits.

I did have problems with balance during a period when my blood pressure dropped
20
points when I stood up.  This was caused by the interaction of the medication I
was
taking--also dehydration can cause it.

11) On painful eating:   I get steroid trigger-point injections at the Mayo
Clinic in
Minnesota once ever 4 months.  For the 2 months after the injections (36
throughout my
head, neck and inside my mouth) I can chew basic foods that aren't tough (no
steak,
popcorn, pizza crust, raw carrots, etc.)  For the next  month, as I await my
next trip to
Mayo, I have to cut way down on the chewing, and the last month is nothing but
peanut
butter, scrambled eggs and protein shakes.  (I don't eat carbs--baked potatoes,
rice, pasta
could be added for you)

I agree most of this is related to your muscles, ligaments and tendons--all
because of the
trigger points that go nuts in people with Fibromyalgia and Myofacial pain (they
overlap).


Anyway, that's my 2 cents.

Ann

Sorry for so many more questions....thanks for bearing with me, I sure do
appreciate it!
   (I will be keeping your answers for refrence)

   1)  Does anyone get a racy nervous feeling from eating?
   I get this from regular foods (not sugar or caffeine) meat, potatoes, veggies
etc

   Could this be from a sensitivity or just my whole system out of whack?
   (like all the muscles, ligaments and tendons trying to digest)

   2)  Has anyone noticed certain foods taste bad (kind of like they are
spoiled)?
   Example...milk to me now smells sour, and white bread tastes like dough.

   3)  (This one is kind of wierd) After being in a certain position like
tip-toe, now it feels like someone is trying to lift my nails off. Anyone have
this happen?

   4)   Does anyone wake up with severe nausea for no reason?

   5) (wierd question again) When I eat, just using the knife and fork it leaves
such a deep indention in my fingers and hand that it hurts bad. Anyone else in
pain like this?

   6)  Or when you take your socks off, the indention from the socks hurt. It's
like the socks are way too tight but they aren't?

   7)  Anyone lost elasticity in their skin?  How does it feel to you?  Does it
look like a bunch of tiny wrinkles that hurt? And pruned fingers that haven't
been in water?

   8)  Men with nails and wiskers growing way way too fast? Like a hormone thing?
   Also, when I push on my toenails the color is not there, they are almost
white.

   9) Is it fact with this that we all have a lower oxygen content in our blood?
   I had a venous blood gas test done that was way off the dr said.

   10)  When you cross your legs do the bones hurt from touching?

   11)  Are some of us unable to absorb the proper nutrients from foods?
   Maybe this would explain my 50 pound weight loss while still eating.

   12)  When I squat down for a min. and then stand back up, my legs are real
shaky?

   13)  I'm so sensitive that I can't even fan my face without getting a terrible
sensation in my eyes, kind of out of focus. This is the same thing that happens
when I lean over the toaster and the heat comes in my face. Anyone?

   14)  Does anyone get headaches so bad that you can't even touch your forehead?
   Normally rubbing it would feel good. It feels like a pressure coming from
inside pushing out.

   15)  When I lower my arm there is a swelling on my wrist, the dr said it was a
ganglion cyst.But when I raise my arm the lump goes away, so I got an
ultrasound. Now the dr says it is my vein that widened near the pulse area, he
said it is right where all the muscles, ligaments and tendons are.
   Also when I raise that same arm, (the inside of my forearm) my vein running to
the lump falls and gets a deep gully, sunken in.
   Has anyone else had this happen?

   16)  Does anyone else get pain in their ears from using a Q-tip (very gently)?
   Also an excessive amount of ear wax, and way too fast (with no sinus drainage)
   My ears feel and sound like they are perculating. Anyone else?

   17)  My eye muscles are bad too, when I read even for a couple minutes they
feel strained and tired...? (20/20 vision though they said 2 yrs ago) Vision
getting worse.

   18)  Blinking my eyes so hard to where I actually hear something near my
temples?

   19) Have to keep my hair very short, I get bad scalp pain from laying on
pillow. It feels like my hair is being pulled?

   20)  Urinary incontinance?

   21)  The last time I was at a Neurologist he had me stand and raise 1 leg and
then do the other for balance check. Now I can't even do that. Also he asked me
to stand feet together and close my eyes and walk a straight line, one foot in
front of the other, I cant' do that either.
   Can you?

   22) Do you get face pain from eating (chewing)?
   Sometimes when I'm eating I lose control of my jaw and it clamps down.
Sometimes I bite my tongue.

   I know this is a lot of questions (sorry) I'm just trying to compare because
I'm getting so much worse, very quickly.
   This all seems somehow related to all my muscles, ligaments and tendons.

   Thanks a lot,
   Terry



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[Non-text portions of this message have been removed]

I just want to thank everyone for their help and all of the suggestions.
   I am trying the suggestions, and looking into the other sites you sent me to
look at.
   I appreciate it!

   Thanks for your concern also
   Terry


---------------------------------
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[Non-text portions of this message have been removed]

I have a white coated tongue...and white in the back of my throat.

   I have alread been to the dr and the hospital for tests. It is not...candida,
a virus, or bacteria.
   They do not know what it is. Several doc's have looked at it too.
   One internal med doc said "Oh your throat is really red, it looks burned"

   When I swollow, sometimes it feels like broken glass (even a soft sandwich)
   sometimes it even feels like this from a glass of water.



---------------------------------
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[Non-text portions of this message have been removed]

Everytime I bend my knees, my neck, my spine, basically everything I hear
cracks.
   Lots of cracks and pops, like if I lift my arms over my head it sounds like
about 20 cracks.
   Everytime I bend my knees I hear about 3, and now the wrists and ankles are
going too.

   Is this a fibro thing?

   Does this happen to anyone else?

   My knees always feel frozen (like there was ice on them)
   My feet are frozen the same, even in my shoes (my wife has to fold 4 layers of
blankets next to her leg or my feet freeze her hips when were on the couch)

   Is this a fibro thing from circulation or something?

   Thanks
   Terry


---------------------------------
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[Non-text portions of this message have been removed]

Have any of you with real bad fibro had this happen? (please answer any if you
can)

   1) Every time I use any muscles or exert myself it makes me start to shake.
   Then it goes into twitching and spasms with the most horrible pain I can't
even tell you.

   2) I can barely walk on my feet because of the bone pain. The pain is so bad
it is like the carpet fibers hurt when I walk. The cracking sounds coming from
my legs are like a bunch of pops all in a row, then they get frozen cold.

   3) Another thing is when I'm trying to sleep my head hurts from laying it on
the pillow, and then it makes my ear hurt. Also my sholders get so bad I get
real deep indentions in them from laying down and then they go completely numb
and I have to keep rolling over all night. It gets to the point that I can't
even touch my own head, it hurts to rub it.

   4) Has anyone experienced any muscle loss, or muscle tone loss?

   5) One more thing is when I lift anything at all even a gallon of water, my
head feels strained, a feeling like I'm not getting any oxygen. This makes my
vision blurry too.

   If anyone could explain their experiences, if they are anything like
this...I'd sure appreciate it.

   Thanks a lot
   Terry


---------------------------------
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[Non-text portions of this message have been removed]

I have multiple chemical sensitivity to odors real real bad.

   Has anyone had a time when you can just smell something that is really bad
like something rotting?
     Anywhere I'm at as if it's myself (but it's not) I can get this smell at any
time.

   Also, Foods don't taste like they use to, I cant really describe it exactly
but white bread tastes like dough, chicken kind of tastes like chicken but after
I was chewing it I had to spit it out, it tasted spoiled to me. My fiance was
eating the same thing and said it was fine.
   Did this ever happen to anyone else?

   Please let me know if you have this happen to you?
   I appreciate it...
   Terry


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[Non-text portions of this message have been removed]

Has anyone with a white coated tongue noticed that you have white in the back of
your throat too?

   I have had throat cultures and tongue cultures and they all came back "normal"
for candida, bacteria, and infection.

   Thanks
   Terry


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[Non-text portions of this message have been removed]

Is anybody else out there freezing in hot weather?

   Sometimes just eating makes me frozen, even if the food is hot...Anybody else?

   Something is wrong with my body temperature and it's not my thyroid.
   I dropped from 98.6 to 97.3 normal temp now. It is so severe almost
hypothermic.

   Anybody have any comments?

   I'm talking cold, frozen, even coats dont warm me.

   Is is a part of the brain not working properly?

   ...also is it ok to drink water with real lemon in it?
   Someone said it helps your liver, but I do have MCS and don't know if this
would help or hurt.

   Thanks
   Terry


---------------------------------
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  Get on board. You're invited to try the new Yahoo! Mail.

[Non-text portions of this message have been removed]

Hi this is Terry,

   Would any of you know if you get blood flow problems, I mean not enough blood
flow to the brain or low oxygen in blood?

   My oxygen level with the finger monitor is around 90 yet of course I can't
breath from the MCS yet they think I'm getting plenty of oxygen.

   A neurologist told me it seems that I'm not getting enough oxygen to the brain
but he doesn't know why.

   I also get angina pain the more I exert which is barely any, and especially
around odors is the worst.

   My liver panels are ok, does this even mean anything with MCS?

   I feel very toxic and am having many physical problems, kidneys, pale stool,
red spots popping up called "petechiae" which is a sign of bad circulation or
clotting and also from toxicity which could be liver or kidney problem or who
knows.

   Can liver tests be normal with MCS?

   Or is it completely undetectable?

   Can you be toxic where medical doctors can't find it until it's too serious?

   For 2 years since this started I can't stand up without feeling like no blood
or oxygen is going to my head, which has progressed.
   Low oxygen to the  system starts shutting everything down.

   Anybody had any experience with oxygen problem?  Or when standing?

   Any problems to any or all questions would be greatly appreciated...

   Thanks
   Terry



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[Non-text portions of this message have been removed]

I previously wrote that the dr found protein in my urine.

    We realize now we found that I was tested positive for "isocyanates" which I
didn't know also was a form of cyanide, which of course is poision.

   As you know I took the Mayo Clinic CYP2D6 test that showed I was a poor
matabilizer for meds, I didn't take the other tests though but should have I
think they would have been poor also.

   We realize now finding plastic to contain cyanide, as we live where we can
burn our paper and plastic garbage, we use to burn so many milk and water
plastic jugs and sometimes we would smell them in the house smoldering
still...very stinky.
   We didn't know that burning plastic releases cyanide poision gases. We also
baked potatoes in the fire pit.

   It's starting to look like my MCS is related to this isocyanates. We also used
a lot of things like pestecides and weed killers etc which also contain cyanide.
   We must have burned 1,000 or more plastic jugs, carpets, shingles etc without
knowing. This kind of explaines the first odor that bothered me badly was
plastic.
   Dont know if I always had this isocyanate thing or it built up. Also we both
are smokers which also has cyanide in it.

   Seems very likely as I woke in the middle of the night with a tight chest and
couldn't breathe, a day or 2 after using bug foggers and burning in pit. We'll
never know for sure but 2 days later I was doubled on my ativan for anxiety only
to see bad reaction.

   Then foods made me nervous, pills didn't work, and started getting pain for no
apparent reason.

   Question now is...what do I do?
   As this isocyanate thing is in many things, not to mention I am now sensitive
to everything.

   Has anyone else ever had blood work done by a toxicolligist?
   He was stumped when I tested positive for isocyanates.

   Thanks for all your replies...and please reply again if you wouldn't mind

   Terry


---------------------------------
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Business.

[Non-text portions of this message have been removed]

HI
   I have doc appointment tomorrow.

   Can anyone tell me if alcolhol bothers them bas when they put on arm for
bloodwork.


   Also I breathed oxygen from fiances plastic tube at hospital and instant
headache.
   I beleive it was plastic tube as it smelled like it and they are new for each
person.

   It cant be the oxygen right

   Please answer these few questions from personal experience or knowledge.
   I have no chioce but to go to doc for kidneys and he doesnt beleive in mcs.

   I dont have a nature doc and my problems may be to serios yet docs always make
me worse with radioative dyes and mri s and such.

   Also it seems many of you are able to tolerate medicine . Is this true or I'm
wrong.

   How can anyone not be able to take meds in even life or death situation.
   Espesially if needed for continuid use.

   Please give me some more replies on these questions about alcohol for shot and
how it affected you
   Also the plastic tube oxygen thing

   Thank you and looking for a reply with someone it also may have affected

   Thanks for all others

   TERRY

Julie Laffin <jlaffin@...> wrote:
           Terry,
You have to protect yourself from exposures. I know
your fiance is important to you but you are putting
your health at risk by so many exposures at the
hospital. Do you have a charcoal mask you can carry
with you and wear? Mine has helped me a lot and I use
it everyday if I leave my house. Sometimes I need it
at home if I am having an extremely hypersensitive
day. If you don't have one email me your address and I
will send you one of my unused spares.

We know you are not exaggerating your reactions. What
you are going through sounds awful. Please take care
of yourself. See if you can limit your exposures and
find a safe place to sleep. These are very important.

best wishes,
Julie

--- Terry <terrywindowman@...> wrote:

> Hi
> I am very mcs to odors exteme and food I'm sure.
> I had no choice as fiance needed me to rush her to
> hospital in chicago.
> She had many test and I coundn't hardly make it in
> there at all.
>
> They have so many smells and elevaters full of
> perfumes and colongnes.
> Everyone smells.
> They gave ger shot and rubbed alcohol on arm and I
> had severe headache instantly and head sensations.
>
> I have also seen her drink 1 gallon of stuff for
> colonoscopy and it also made me headache and sick.
>
> I have bad kidney problems or renal and may have
> to go in and I dont see how they could work on me if
> I am so mcs and I know I coulndnt drink stuff or
> also gave her morphine for pain and others stuff.
> I also have fibro like pain whole body and havent
> slept more than 4 hours in 2 years from valium
> severely needed for anxiety but worse than anxiety
> .
> It also makes me worse.
>
> How does someone who is mcs bad get medical help
> for real problems with the many chemicals they use
> like anastecia and even just the alcohol on a i v or
> shot or bloodwork.
>
> They dont understand mcs and think it's all in my
> head and blame severe anxiety for it as usual.
>
> I am deathly afraid to go get help.
>
> I also need false teeth but cant get oral surgery
> and the molds and teeth thereself are all chemicals.
>
> I had to eat whatever I could get my hands on and
> even a cookie gave me diaria and made me more
> nervous.
>
> I'm not digesting food and losing weight rapidly.
> Even if I eat I dont absorb food or water.
> Severly dehydrated and peeing like soup.
>
> Now blood in stool but all procedures are so
> dangerous to me.
>
> How do all of you with bad mcs and to odors deal
> with these things.
>
> I even had some kind of seizures many times and a
> tia sroke but didnt see doc as cant even take an
> asperin and they want you on all kinds of meds.
>
> I almost died just being there at her bed all day
> then slept in van on floor 6 days with no sleep as
> truck in parking garage and pure car exhaust all
> everywhere.
>
> I cant take this anymore and dont know what to do.
> I'm ignoring serios problems but am not
> excaggerating my odors or how bad they affect me.
>
>
> Also does anyone feel freezing when hot out and
> other way around.
> It was just a hair chilly and I get severe body
> shaking like freezing to death. Many times I take 5
> minute nap and when wake frozen and disoriented and
> have to pee .
>
> Also blurred vision with all oder symtoms.
>
> Now I'm home where more stuff in here I cant get
> rid of that smells and makes me worse. Also all
> bills now late and I cant work anymore but dont
> bother about disability answer as it's 5 hundred if
> can get which isnt enough to live in shack.
>
> I seem to be in severe way and now all my perfect
> credit bussiness and home at stake as cant work and
> hardly walk with pain and head sensation.
>
> My fiance doesnt get mcs and says go in hospital.
>
> She seems to think docs can help and makes me sad
> as she dont beleive what I cant do or eat.
>
> Her parent dropped food off like ham and cheese
> loaf anf canned foods ect ham and she thinks I'm
> not grateful but cant eat it.
>
> Living on turkey sandwiths from deli only natural
> they say.
>
> Need replies and also to fiance to help me make
> her understand my problems.
>
> Need medical advice fast as what to do.
>
>
> While there I tried on oxygen thing of hers and it
> gave me severe headache at once and smelled like
> pure plastic
>
> Thanks and please reply
>
>
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Hi
    I am very mcs to odors exteme and food I'm sure.
   I had no choice as fiance needed me to rush her to hospital in chicago.
   She had many test and I coundn't hardly make it in there at all.

   They have so many smells and elevaters full of perfumes and colongnes.
   Everyone smells.
   They gave ger shot and rubbed alcohol on arm and I had severe headache
instantly and head sensations.

   I have also seen her drink 1 gallon of stuff for colonoscopy and it also made
me headache and sick.

   I have bad kidney problems or renal and may have to go in and I dont see how
they could work on me if I am so mcs and I know I coulndnt drink stuff or also
gave her morphine for pain and others stuff.
   I also have fibro like pain whole body and havent slept more than 4 hours in 2
years from valium severely needed for anxiety  but worse than anxiety .
   It also makes me worse.

   How does someone who is mcs bad get medical help for real problems with the
many chemicals they use like anastecia and even just the alcohol on a i v or
shot or bloodwork.

   They dont understand mcs and think it's all in my head and blame severe
anxiety for it as usual.

   I am deathly afraid to go get help.

   I also need false teeth but cant get oral surgery and the molds and teeth
thereself are all chemicals.

   I had to eat whatever I could get my hands on and even a cookie gave me diaria
and made me more nervous.

   I'm not digesting food and losing weight rapidly.
   Even if I eat I dont absorb food or water.
   Severly dehydrated and peeing like soup.

   Now blood in stool but all procedures are so dangerous to me.

   How do all of you with bad mcs and to odors deal with these things.

   I even had some kind of seizures many times and a tia sroke but didnt see doc
as cant even take an asperin and they want you on all kinds of meds.

   I almost died just being there at her bed all day then slept in van on floor 6
days with no sleep as truck in parking garage and pure car exhaust all
everywhere.

   I cant take this anymore and dont know what to do. I'm ignoring serios
problems but am not excaggerating my odors or how bad they affect me.


   Also does anyone feel freezing when hot out and other way around.
   It was just a hair chilly and I get severe body shaking like freezing to
death. Many times I take 5 minute nap and when wake frozen and disoriented and
have to pee .

   Also blurred vision with all oder symtoms.

   Now I'm home where more stuff in here I cant get rid of that smells and makes
me worse. Also all bills now late and I cant work anymore but dont bother about
disability answer as it's 5 hundred if can get which isnt enough to live in
shack.

   I seem to be in severe way and now all my perfect credit bussiness and home at
stake as cant work and hardly walk with pain and head sensation.

   My fiance doesnt get mcs and says go in hospital.

   She seems to think docs can help and makes me sad as she dont beleive what I
cant do or eat.

   Her parent dropped food off like ham and cheese loaf anf canned foods ect  ham
and she thinks I'm not grateful but cant eat it.

   Living on turkey sandwiths from deli only natural they say.

   Need replies and also to fiance to help me make her understand my problems.

   Need medical advice fast as what to do.


   While there I tried on oxygen thing of hers and it gave me severe headache at
once and smelled like pure plastic

   Thanks  and please reply


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Hi
   I have myoclonic jerking bad and whole body spasms and wonder if this is also
from fibro or mcs to odors as it gets worse with odors or excertion.

   TERRY


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Hi
   Is there others who there muscles seem to be wasting away.

   It keeps getting worse.
   Thanks for all replies


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Hi
   I have been urinating too much with white strands in it that turn to a cloud
or suspended till sit a bit then pull together like a magnet after sitting or
right away.
   Itf it sits in a glss it may sink at times and 1/2 inch at bottom.

   Urine basic test dont show up. Did 24 hr protein test and doc on phone said
ok.
   My question is has anyone had symtoms like this and why cant they identify
what it is.
   Can candida possibly be in urine?
   Nomatter what they should be able to identify what it is.

   I have white tongue and had a culture and fungus test at hosp at said no
thrush or fungus.
   If a murder was commited they always find out what anythiong is.
   I use a tongue scaper but it come right back.
   THe main question is the urine thing as I dont know if a doc would even look
for candida.

   One guy said it's your ph.

   The tongue I mean.


   I did a stool sample once at a fibro clinic in chicago and a vague questioaire
and stool came back positive for yeast.

   My guy there said no fibro as no points over year or more ago.

   My normal doc said all people had yeast and it was a scam.

   I tried the diet and couldn't do it at time and tried nystatin and he said if
3 months still same stool was false positive.

   I also went to randolf clinic in chicago and at time seemed hokey to me.They
were mcs like the one in texas.

   They were injecting natural serotonin in people and I found it was from
cadabers and got out.

   They had purifiers all over and I found it harder to breath the hot air seemed
not fresh.
   I heard they were good though.


   I guess I didnt want to think all the stuff they said was true about carpet
and all my home stuff and all regular docs said it was a scam to take poor
peoples money that were having problems with anxiety or just sick and were
trying anything.

   I was confused.
   There are too many thing that bother us greatly.
   The book was endless and they only took cash which seemed odd for someone who
wants to help.
   It was impossible to remove all the book said yet the stuff bothers me bad.
   They even said some of them smoke as everyone cheated some and suffered for it
not just with ciggs.
   I guess I was in hope I could beat this without giving all up.Denial or not
enough knowledge.
   Any clues to this white in urine maybe someone had simular problem.

   I know some had white tongue I heard.
   Is it possible candida in urine  and did anyone find why white tongue or what
it is?

   Thank you very much and please reply
   TERRY


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Hi

   I think you wrote that anxiety disorders can make you mcs also.

   I'm sorry I lost it or just dont know how to find your reply

   I did have one with article on it that says if symtoms persist after exposure
is over could be anxirty i beleive.

   If I repeat myself forgive me.

   I had and have bad anxiety but I may have told you was under control till a
unknown chest pain hit and shot me with visteril and got myoclonic jerking.

   Told to double pill  BENZO  and had horrible reaction and like parodoxial
reaction and thought it was me so tried to fight off anxiety with excercise and
within a month stared pain syndrom and all foods made me get nervous like
feeling I now see was sensitivities that came from nowhere.


   Later started getting some odors bothered me yet I would not have known as had
no knowledge.

   I went in bank an felt dizzy and weak and that seemed to be some of first
noticable signs of mcs as its recirculated air any many perfumes ect.

   I went through a long period where I got so weak if I stood and had to lay
down .
   Then quit meds and smells excelled to .

   I noticed plastic first.

   I was sick in bed before that and our heat vent made me sick and my fiances
nicotine gum also but I didnt know why and before quitting meds this was.

   I was getting sensitive to odors and didnt know it thought it was just stinky
gum and such.

   Gum is a trigger still and many like in mcs manual.

   I got nuerological symtoms like headaches and dizzy and sickly with myoclonic
jerks also.

   All even unscented products are even bad for me.

   My house is full of stuff my true love wont lose as she lost so much.

   Now she put on vicks sav and it's affecting me.

   I seem that the meds added to my mcs but also remember useing bug fogger 2
days before chest pain sent me to er.

   Also poisons in yard for weeds that week.

   Just before that we had a small storm shelter put in of concret and it smelled
like concrete bad and some glue thay sealed it with. We slept in it in a rash of
tornadoes that summer.

   She even said it stunk bad so we painted it to cover concret smell and of
course strong paint odor.

   So many things I did to get affected I cant remember .
   Like yard fertilizer and garden I put on by hand and live on river where farms
drain into. We used the pump I bought to pump river water to water garden and
yard and swam in it not ever thinking it may harm us.

   She also got a few sensitivities now like the neigbors dryer vent blows on our
patio and we run to close windows and cant be on patio anymore.

   It really gets me headaches and all and her even from that one or going down a
diaper isle closes her throat.

   I guess I'm still concerned how anxiety problem can cause this when so many
things could have and my job with ammonia on my hands daily 30 years in window
cleaning.

   My fiance has no anxiety disorder and still is becoming more sensitive as time
goes and also to food.

   If from anxiety is it somehow different as I have the symtoms of the full mcs
books and all.

   I would think if anxiety caused it a anxiety med would calm you and would be
gone yet no meds I tolerate anymore.

   If mcs I guess being a chemical strong would make you worse not better.

   I mean if you were drugged so bad you may not see symtom as oder being drugged
but wiuld still get sicker as a drugged just dulls sense like pain pill dulls
pain right?

   Nomatter what chemical it was if a med for anxiety or gas or pain med they are
all chemicals right and our body takes only so much in the unlucky ones.

   I know weed killers and all that stuff has to have had an impact wouldn't you
say.

   I dont understand the anxiety causing it connection.

   I have been told mcs is anxiety or somatisation and many things by docs except
chemical exposer or food additives ect.

   Which is the right info and what is the difference for releif of some symtoms?

   I have had a severe trama in my life also and I know it says that can cause it
but which is more likely if you live in chemicals and noticed things to a
smaller degree way before anxity problems.

   It seems the anxiety med was part of straw that broke camels back.

   Mainly as when doubling it made me start getting sick and food sensitive and
ect

   Thanks a lot Terry
   Please reply and thanks for all other replies
   I trust you all more than books as you who have it know what it's like.


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Hi
   I have been I'm sorry if grafhic  peeing way too much and skin is very
dehydrated as I pullit it stays and now blood vessels popping out in legs and
every where.

   I pee in a clear class as to check color and always dark with white strand
mixed in thar after a few minutes form a cloud.

   Sometimes cloudy right aeay.

   One day it was like pure ammonia as soon as I went I mean pure to where it
burned.

   Did a dipstick urine test and showed nothing.
   They said protein wont show in dipstick so did 24 hr for protein and left mess
at doc what happened in test and they left message nothing.

   How is this possible they cant Identfie what it is?

   I talked to deb about it as she was a nurse and she agreed sound like kidney
failure with all the skin and all.

   I had white tonge culture for candida and fungus said no too but no answer to
what it is.

   I beleive I'm toxic for sure from mcs but why cant they identifiy what is the
cloud and I never pee ok in long while and losing weight rapidly even eating.


   My fiance thinks this is good yet i'm turning to a prune and so dehydrated.
   I know the odors toxify me and my food but cant figure why they can see in
plain sight of them whats wrong renal kidney wise.

   I also had microscopic blood in yrine a while back but didnt follow that up at
mayo.

   I showed dye after mri not leaving kidneys after a bone scan also but doc
misread that by mistake he said.

   Anyone with any knowledge or problems with renal liver or kidney from mcs or
fatige fibre ect. please shed some light on this.

   One said the air in my home and area is toxic for me and of course my not
whole food and is like poisoning me and I read some articles posted saying same
.

   I cant seem to get enough away from toxic stuff but this pee thing and I am
skin and bones and like skelaton.

   TERRY


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I'm having such a terrible time with these odors. It's making me all racey with
head sensations.

   Is anybody else out there with this so bad...I'm just trying to drink out of a
plastic jug and all I can smell is plastic.

   Does anyone else have it this bad? Is this possible?

   I'm smelling things in the house but I don't know what it is, it seems like
everything smells, even bread.
   I'm getting serious anxiety from this.

   The allergist said that this wasn't an allergy, and that it was impossible to
show up on a test, so it isn't real (so he said)

   Please write back about the plastic jug if this happens to you?
   And if anyone else gets terrible symptoms please let me know what they are,
and if you could describe them?
   I can hardly be on the computer becuase it seems to make me all raced up
too,is this just me?

   I appreciate it !
   Terry


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Hi
   I'm very anxious to talk with you the group as I'm having many problems and
only sufferers seem to know the answers.
   Docs dont beleive anything about fibro but pain.

   Please reply when you can

   Thank you


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[Non-text portions of this message have been removed]

Hi everyone I'm Terry and new to the group, (and need your
help)

       I'd like to start my story by saying that I was never sick one day in my
life before this (48Yrs) , nor did I ever take any med.
      I have run my own business for 30 years, and I was a very physically active
person.
       I got a chest pain one night that I thought was my heart, so I went to the
hosp. 2 days of tests, I was o.k., but now all of a sudden I needed this med.
Ativan (for the anxiety caused by this)
       The dr kept me on this med for 3.5 more years, and then I got another
chest pain and went to the E.R., where they gave me a shot of Visteril, that I
had a reaction to, and began jerking all over and freezing. (was later told by
the neurologist, it is myoclonic jerking that I have now, from the Visteril.
Mayo Clinic said they thought I had a paradoxcial reaction)
       The next day my dr told me to double the Ativan and that is where more
troubles began. Now I felt the pill kick in, and I got a strange feeling in my
head, it felt like it was strained. And now, it didn't relieve any of my
anxiety. Within 2 weeks I started getting symptoms.

    I had already been to so many dr's and had so many tests that I suspected it
was this medicine.
   I found a rheumatologist that said, "I think you figured out your own problem,
this Ativan could be causing your problems"
   Back to my dr (GP) and said I wanted to be taked off Ativan.
   He put me in the hosp and stopped my med cold turkey.
   By day 2 everything started to smell so strong, and everything started to make
me feel sick. When I would smell chemical odors, I would start to jerk. (I was
later told that I got Chemical Seneitivity from being withdrawn too quickly)

    He put me on Seroquil  "to help calm you down during the withdrawal" I just
about went out of my mind. And the other reaction that I got from that, was
numbness from the waist down, and was almost completely unable to go to the
washroom for 4 days. (the dr's answer to that, was to do a urine test on the 4th
day, to make sure I didn't have an infection.)
   He gave me Lexapro 1 time, on the 2nd day, and it made me feel like I was
going crazy, so I refused any more.
      The insurance ran out on that 4th day, so I was booted out of the hospital
with NO MEDICINE AT ALL!

        I lasted like this for 1 month, going out of my mind with anxiety, just
running all over the yard trying to stop it, but nothing worked.
   and so many problems now its unbearable.
   I never wanted to be on any medicine again after what I went through, and
still was going through.
   But I had to go to work, we were about to lose our home.
   My nuerologist said that it was a mistake being taken off that fast, and that
I would probably have to go back on it to get myself back on track.
   Went to my psychiatrist for help he said "Oh great, now I have to clean up
someone elses mess"
   The psychiatrist didn't know what else to do with me, because I am very pill
sensitive and he, over time (since the chest pain) has tried me on every med. at
least once, but every pill I had a reaction to.
   So, he put me back on Lorazepam (Ativan) 1 mg 3 x day which did not calm the
anxiety but gave me more bad reactions.

   At this time I also joined Benzo yahoo group (benzo is the class of drugs
Ativan is in) I have found many others there that have developed MCS from either
their medicine or being withdrawan to quickly. They like me, started feeling
nervous after eating also.

          By now I have been to 20-25 doctors including Mayo Clinic, and had
every test possible, including EEG, 2 CT's, 3 MRI's, pulmonary function twice,
muscle and nerve tests, poision screening, eye tests,
   every autoimmune test possible, chiropractic work (caused more pain)
   accupuncture, fibromyalgia clinic and 2 rheumatologists and they all said that
I did not have Fibromyalgia because I didn't have the check points. Yet I have
identical symptoms of pain and muscle problems from head to toe. And even an
angiogram on my heart (believe me, there are more)
    All my tests, and doctors, and specialists, and all our savings spent to find
out that I'm just fine. (so, they all say)


   To this day, my symptoms are:


   EXTREME anxiety

   PAIN so bad, that if I use any muscles, they stay hurting. My legs hurt
    from walking, arms hurt from lifting, and my feet hurt from standing.

   Strained feeling in my head (not like a headache) it hurts if I lift, smoke a
cig., read, watch t.v., or from chemical smells.

   Vision is all messed up (I'm 20/20) blurry, cant focus, pain and pressure
behind my eyes, clicking, and can't read for more that a few min.

   Myoclonic jerks, arms and legs (very strong, day and night)

   Twitches in legs always, and sometimes in my face and arms

   Body shaking all over (very severe)

   Cant sleep more that 3-4 hours

   No appetite (lost 50 pounds)

   nausea everyday for almost a year

   Burning skin

   Fears of everything and Phobias (that I never had) And a great loss of self
confidence (that I use to have)

   When I fall asleep, even for a 5 min. nap, I wake up panicky and trembling
   with a fear feeling.

    My body temp dropped from 98.6 down to 97 and I am freezing all the time and
I tremble from the cold. And in the heat I feel ill

   Crying spells

   Stammering words

   Eating makes me nervous

   Nightmares

   White tongue (not candida, already tested)

   Outer circle of palms turned red, and stayed that way

   Neck is red, looks like blood coming to the surface

   Dry itchy skin

   Salviary gland swollen on left side

   Breathing seems harder

   Unusual heartburn

   Bone pain

   joints cracking everywhere, including spine

   Loss of muscle tone

   Ringing, humming, or buzzing in my ears

   I feel worse standing (mostly in my head, but my body too)

   Can't think clearly

   Depression

   Horrible costochondritis, worse than ever before. pain so bad in the sternum
area it makes my eyes flash

   Dont feel like myself

   Inner trembling and outer trembling

   My head and body doesn't even feel like my own

   And there is no enjoyment from anything anymore

   (I know there are more).


       To think all this started from a chest pain, and the dr telling me
   I needed anxiety med.

      I need constant reassurance every day, because I really don't believe that
I'll ever be the same again. And I cant be without my wife for more than a few
minutes at a time, or the anxiety is overwhelming.
   She has been at my side every minute for 19 months, since I got sick.
   Before this we had a perfect life together, for so many years!

   I'm scarred to death, and don't know what to do!
   If anyone has had any similar symptoms or problems that they wouldn't mind
sharing with me, I sure would appreciate it!
   Or if someone would be willing to talk about the symptoms on the phone, or
please email me at terrywindowman@...  I'm at the end of my rope, and no
doctors believe me, or in MCS.

          Thanks again.....Terry

    PS...I wrote this letter sometime back and since then my sensitivities have
worsened, especially to odors. And now to add to my list I am getting rashes all
the time. I can't even walk in a store without the smells making me sick.









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