Re: Re: MCS News: Week Ending 6/29/07 - old post - cfs/fibro

[Guest guest]

, I also have a disease caused by a sick building..... & I also have sleep

apnea. Just got my CPAP about a month ago.......its wonderful!!!!!!!!

[Guest guest]

you have to have sleep studies, BEFORE you get a CPAP machine, gang......to be

sure its warranted. i HAD to have two sleep studies. my sleep apnea is

HORRIBLE.

victoria :>(

[] Re: MCS News: Week Ending 6/29/07 - old post -

cfs/fibro

Thanks , I'm hanging in there. dry, hot summertime and me no

longer get along to well. yes I do have sleep apnea but haven't got

to try CPAP. inflamation is a factor for me. sounds like you have a

very good,careing doctor. certain extra conflicts surrounding my case

are greatly hindering my quest for medical help which I wont talk

about at this time but may if push comes to shove.

[Guest guest]

YEAH, EVERYBODY IS DIFFERENT, " WHO. " MY 0XYGEN LEVEL DIPPED TO 75% OR SO, WHILE

I WAS SLEEPING. I HAD TO HAVE A CPAP MACHINE, & ITS MADE A WORLD OF DIFFERENCE.

V.

[] Re: MCS News: Week Ending 6/29/07 - old post -

cfs/fibro

the mayo clinic just tested me one night and wrote probable or

possible sleep apnea in my report. mine seems to get worse when

sinuses are bothering me.

>

> you have to have sleep studies, BEFORE you get a CPAP machine,

gang......to be sure its warranted. i HAD to have two sleep

studies. my sleep apnea is HORRIBLE.

> victoria :>(

>

[Guest guest]

Hi Valarie--oh gosh, Val, my CPAP is wonderful!!!!!!!!!!! My oxygen level was

dipping down into the 70% range while I was sleeping, due to bad apnea....not a

good thing! Its wonderful now, though, with use of my CPAP. I had forgotten

that the air in the CPAP machines are hepa-filtered.....but I also have a hepa

filter in my home now, which I know also helps.

What kinds of supplements are you taking to rid yourself of the inflammation,

Val? You've probably told me before, but I just forget...imagine that! Is that

Sam-E a supplement? Where do you get that? Expensive?

I haven't been diagnosed with fibro, Val, but sometimes I wonder. I'm pretty

numb from my butt down, & I have ALOT of pain from my injury/demyelination down,

which is about waist level. My pain is neurogenic, Val, because of my cord

injury.....but **** happens, you know? I just try to deal with it, as best I

can. Sometimes, though, that pain is horrible.....freeze/burn, is what I call

it.

Take care, gal.

[] Re: MCS News: Week Ending 6/29/07 - old post -

cfs/fibro

Hi ,

I think my CPAP is helping me. It is hard to tell with me because I am also

using the respirator at work when I am in the bad building. And, I am taking

supplements and meds to help relieve the inflammation. The doctor said the same

thing. I am using many methods to reduce the inflammation. His theory seems to

make sense to me - inflammation from many causes can affect our bodies and we

all know that the mold is causing major inflammation.

The CPAP may be beneficial if someones house is slightly contaminated because

the air that goes through the machine is HEPA filtered. That doesn't mean that I

think people should stay in contaminated places - just that it might be of some

help in one.

I noticed that you mentioned the fibro pain. That is another area where I have

seen improvement - but I have also been using Cymbalta. Dr. Gold suggested I

should try to stop it and see if I still continue to have the same benefit. The

dr that had prescribed the Cymbalta had also told me I could stop it and switch

to SAM-E. I am trying that now - so far two days and so far so good.

take care,

[Guest guest]

Isn't it bizarre how they never seem to figure out that many people's night

breathing issues are caused by sick buildings and the airway reactivity that

comes from them.

SO, any sleep studies that they do in any given place may in many people be

effected by the mold situation there.. Many people who have been

hypersensitized to mold can't sleep in most hotels because of their screwed

up ventilation systems, etc. Why should sleep labs be any different?

This is an important variable that is getting completely (intentionally?)

overlooked..

You can imagine how many people have problems whose problems get ignored, or

vice versa...

[Guest guest]

thanks, Valarie--you take ALOT of supplements!! i really can't afford all that,

val, but i might try at least some of them. glad YOU are doing better, though!

take care,

victoria