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

[Guest guest]

Hi Jeanine,

I totally agree - I have fibro/cfs and I know that it is physical. Luckily,

the drs that I deal with do not seem to think it is psychological -at least not

to my face. I haven't posted much lately - I am trying to spend less time on

the computer but I read the posts and I hope that you are feeling better and get

help soon.

I was asked by the dr that diagnosed me with sleep apnea to contact the list

and ask any one having fatigue, irritable bowel, fibromyalgia or sick building

syndrome to contact him to see if they are also suffering from sleep apnea. I

believe he is studying whether reducing inflammation by using CPAP (if you have

sleep apnea) would affect these conditions. I am not getting any benefit from

him for doing this - I would like to see him prove that these are caused by

inflammation. If KC says that this is ok - I will post his info. He is located

in NY on Long Island. He is associated with Stony Brook University Hospital,

they have a sleep clinic associated with the hospital. They accept many kinds of

insurance- I think that you can see if they accept your particular insurance on

the hospital website.

take care everyone,

[Guest guest]

Sure go ahead .

KC

--- In , Madeska <madeskv@...>

wrote:

>

> Hi Jeanine,

>

> I totally agree - I have fibro/cfs and I know that it is

physical. Luckily, the drs that I deal with do not seem to think it

is psychological -at least not to my face. I haven't posted much

lately - I am trying to spend less time on the computer but I read

the posts and I hope that you are feeling better and get help soon.

>

> I was asked by the dr that diagnosed me with sleep apnea to

contact the list and ask any one having fatigue, irritable bowel,

fibromyalgia or sick building syndrome to contact him to see if they

are also suffering from sleep apnea. I believe he is studying

whether reducing inflammation by using CPAP (if you have sleep

apnea) would affect these conditions. I am not getting any benefit

from him for doing this - I would like to see him prove that these

are caused by inflammation. If KC says that this is ok - I will post

his info. He is located in NY on Long Island. He is associated with

Stony Brook University Hospital, they have a sleep clinic associated

with the hospital. They accept many kinds of insurance- I think that

you can see if they accept your particular insurance on the hospital

website.

>

> take care everyone,

>

>

>

>

[Guest guest]

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]

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.

--- In , " " <toriaquilts@...>

wrote:

>

> 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]

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]

You're welcome Jeanine- hang in there! We are all here for you -

[Guest guest]

Hi ,

Sorry, I forgot to mention that you have to go through the sleep studies. My

sleep apnea is moderate - but the testing was a trial for me. I had it on two

consecutive days- it was definitely uncomfortable. You have to stay awake and

sleep when told to do it. I am used to just crashing when I need to- you can't

do that there. I didn't even come up as a true sleep apnea candidate through the

questionnaire they use. They ask if you fall asleep watching tv, driving, at

work,etc. I always managed to be awake when I needed to be but would crash for a

nap as soon as I could. If I was watching TV and was tired - I would just go off

to bed no matter what time of the day or night. I didn't fight it. My husband is

the opposite- he falls asleep in front of the tv all the time. He is a definite

candidate for sleep apnea- I have known that for years since they first began

talking about it. He won't get tested. I am calling tomorrow to make

appointments to have my kids tested too. They

all are mold sensitive, have ADHD and snore, talk in their sleep, bad sleep -

all the same things I have. Their psychologist and their neurologist's PA both

think it would be worthwhile to have them tested. They won't be going to Dr.

Gold's center- only because there is a pediatric sleep center nearby that their

dr. recommended for them. The Stony Brook Sleep Center will test children as

well but it isn't affiliated with their doctor.

I have to say that my fatigue has abated somewhat - I do not need as many

naps as I used to.

Take care,

[Guest guest]

Hi ,

Sorry it has taken so long to respond, I am trying to

spend less time on the computer and more with the kids

for the summer. (I am taking online courses during the

fall/spring so haven't been able to be with them as

much.)

I am taking every day:

*4000 to 4600 mg of fish oil (depends on which brand I

buy)

*400 iu vitamin e

*1000 mg vit c

*acidophilus

*50 mg zinc

*papaya enzyme - am & pm

*cod liver oil

*sub-lingual b complex

*250 mg magnesium

*100 mg alpha lipoic acid (really seemed to help

fatigue)

* tums -1 for calcium

Plus the following meds:

*Cymbalta - for the fibro pain- works very well

*allegra d

*singulair

*advair

*flonase

*astelin

*lipitor

The experiment with the sam-e didn't work out. It is

an extremely expensive supplement. The third day, I

woke up so dizzy that I couldn't get out of bed.

Luckily, it left rather quickly, not like the time I

had it for 12 weeks and was on disability. After that

reaction, I looked it up and found that it was from

yeast. I didn't even think to check because the dr

that suggested it knows my mold sensitivities. This is

the second time that I got slammed this summer. A

nutritionist suggested I try Lactaid for my irritable

bowel symptoms. I used 4oz in my cereal and had my

usual mold symptoms within about an hour- I recognized

them and told my husband to throw it out. I looked

that up and it appears to be derived from mold also. I

am seeing the nutritionist today and plan to tell her

so she doesn't suggest it to other moldies.

I believe Cymbalta has been approved for the type of

pain that you are experiencing. You might want to

check it out - nfi- ymmv-

take care,

Val