Re: Re: Immune Dysfunction in CFS (and/or Fibromyalgia)

[Guest guest]

Dr Klimas also uses a cytokine panel. My results were sky high about

15 months ago, and have improved after taking Imunovir (an immune

modulator Rx'd by Dr Klimas, which I order from Canada).

Unfortunately, so far improved blood test results have not resulted in

an improvement in how I feel, but maybe there's a lag between one step

and the next. While on Imunovir, I definitely feel " herx " or die-off

symptoms, which in my case is me feeling kind of like I've got the flu

all the time. I'm about to start a 3-month stretch off Imunovir,

before taking another 3 month course. I'm looking forward to seeing if

I feel any better once I'm not dealing with herx symptoms.

M.

On Jan 4, 2012, at 2:58 PM, Al wrote:

>

>

> Hi Steve

>

> Dr. Bhakta uses a cytokine panel by Neuroscience that tests immune

> function.

>

> Al

> --- , " M. "

> <pumpstersteve@...> wrote:

> >

> > Is there a specific blood test or set of tests that can, with some

> amount

> > of accuracy, determine immune function?

> >

> > If so, what are the test(s)?

> >

> > Steve M in PA

> >

> >

> >

[Guest guest]

Marcia

Did Medicare cover the cytokine panel? What lab/cytokine panel did you

do? I was researching them and I would like to dot he Pharmasan panel that

Neurorelief.com? talks about. My hormones are really messed up and I can

hardly sleep at all. My DHEA was below normal and other hormones are low

too.

Kendra

On Fri, Jan 6, 2012 at 2:48 PM, Marcia on <mmorrison@...> wrote:

> Dr Klimas also uses a cytokine panel. My results were sky high about

> 15 months ago, and have improved after taking Imunovir (an immune

> modulator Rx'd by Dr Klimas, which I order from Canada).

>

> Unfortunately, so far improved blood test results have not resulted in

> an improvement in how I feel, but maybe there's a lag between one step

> and the next. While on Imunovir, I definitely feel " herx " or die-off

> symptoms, which in my case is me feeling kind of like I've got the flu

> all the time. I'm about to start a 3-month stretch off Imunovir,

> before taking another 3 month course. I'm looking forward to seeing if

> I feel any better once I'm not dealing with herx symptoms.

>

> M.

>

> On Jan 4, 2012, at 2:58 PM, Al wrote:

>

> > Hi Steve

> >

> > Dr. Bhakta uses a cytokine panel by Neuroscience that tests

> immune function.

> >

> > Al

> > --- , " M. "

> > <pumpstersteve@...> wrote:

> > >

> > > Is there a specific blood test or set of tests that can, with some

> > amount of accuracy, determine immune function?

> > >

> > > If so, what are the test(s)?

> > >

> > > Steve M in PA

> > >

>

[Guest guest]

Dear Kendra,

I was not covered under Medicare at the time I had those blood tests;

I paid for them out of pocket. Since I'm now eligible for Medicare, I

expect to find out whether or not the tests are covered when they are

run again in about 6 months.

Unfortunately I'm not well enough right now to look up the details on

the cytokine panels. If I get a clear spell later on I will try to

remember to post the info.

About sleep: For years doctors would ask me if I had any trouble

sleeping, and I'd answer " no " because I usually fall asleep in a

reasonable amount of time. However, that wasn't the right question!

The right question would be " Do you wake up feeling refreshed? " , to

which I would have answered an emphatic " NO! " . No doctor ever

mentioned any type of sleep study to me (over decades of problems with

fatigue & brain fog), until I saw Dr Klimas. She suggested a

sleep study, unfortunately right after my health insurance plan

stopped covering full-tilt sleep studies. However, there are less

involved sleep monitors you can use at home. Her office sent one out

that I wore for 2 nights, and then sent back in to have the results

read. I also bought an even simpler type called the Zeo, which is a

headband you wear at night. The study using the equipment that was

shipped to me and the Zeo both showed that I was not getting down into

a deep level of sleep very often. So I was sleeping, but not getting

deep enough sleep to get well-rested. At Dr Klimas' suggestion, I had

a dental " appliance " made, a mouthpiece that holds my jaw in a

position that helps counteract sleep apnea. This sort of mouthpiece

wouldn't help enough with severe sleep apnea, but is helpful for mild

apnea. It has taken some getting used to, but I think it has in fact

been helping me sleep a little better. Not a panacea, of course

(wouldn't that be nice!).

Sorry I couldn't help more.

Marcia on

in Salem, Massachusetts

On Jan 7, 2012, at 12:52 AM, Kendra wrote:

> Marcia

>

> Did Medicare cover the cytokine panel? What lab/cytokine panel did you

> do? I was researching them and I would like to dot he Pharmasan

> panel that

> Neurorelief.com? talks about. My hormones are really messed up and I

> can

> hardly sleep at all. My DHEA was below normal and other hormones are

> low

> too.

>

> Kendra

>

> On Fri, Jan 6, 2012 at 2:48 PM, Marcia on

> <mmorrison@...> wrote:

>

> > Dr Klimas also uses a cytokine panel. My results were sky high about

> > 15 months ago, and have improved after taking Imunovir (an immune

> > modulator Rx'd by Dr Klimas, which I order from Canada).

> >

> > Unfortunately, so far improved blood test results have not

> resulted in

> > an improvement in how I feel, but maybe there's a lag between one

> step

> > and the next. While on Imunovir, I definitely feel " herx " or die-off

> > symptoms, which in my case is me feeling kind of like I've got the

> flu

> > all the time. I'm about to start a 3-month stretch off Imunovir,

> > before taking another 3 month course. I'm looking forward to

> seeing if

> > I feel any better once I'm not dealing with herx symptoms.

> >

> > M.

> >

> > On Jan 4, 2012, at 2:58 PM, Al wrote:

> >

> > > Hi Steve

> > >

> > > Dr. Bhakta uses a cytokine panel by Neuroscience that tests

> > immune function.

> > >

> > > Al

> > > --- , " M. "

> > > <pumpstersteve@...> wrote:

> > > >

> > > > Is there a specific blood test or set of tests that can, with

> some

> > > amount of accuracy, determine immune function?

> > > >

> > > > If so, what are the test(s)?

> > > >

> > > > Steve M in PA

> > > >

> >

>

>

[Guest guest]

Hi Marcia

I'm in the process of getting one of the dental appliances to see if it

will help my sleep apnea. In the meantime, I mostly sleep practically

sitting upright. I slept in a big chair for a couple of years. I sitll

don't wake up feeling like I've gotten any sleep, but at least I can

breath.c

I did the overnight hospital sleep study twice about 10 years apart but

could never tolerate the CPAP. I've also done home monitors that show my

sleep is really chopped up. At this point I really think it's a major

contributor to my lack of progress.

Kendra

On Sun, Jan 8, 2012 at 10:44 PM, Marcia on <mmorrison@...>wrote:

> Dear Kendra,

>

> I was not covered under Medicare at the time I had those blood tests;

> I paid for them out of pocket. Since I'm now eligible for Medicare, I

> expect to find out whether or not the tests are covered when they are

> run again in about 6 months.

>

> Unfortunately I'm not well enough right now to look up the details on

> the cytokine panels. If I get a clear spell later on I will try to

> remember to post the info.

>

> About sleep: For years doctors would ask me if I had any trouble

> sleeping, and I'd answer " no " because I usually fall asleep in a

> reasonable amount of time. However, that wasn't the right question!

> The right question would be " Do you wake up feeling refreshed? " , to

> which I would have answered an emphatic " NO! " . No doctor ever

> mentioned any type of sleep study to me (over decades of problems with

> fatigue & brain fog), until I saw Dr Klimas. She suggested a

> sleep study, unfortunately right after my health insurance plan

> stopped covering full-tilt sleep studies. However, there are less

> involved sleep monitors you can use at home. Her office sent one out

> that I wore for 2 nights, and then sent back in to have the results

> read. I also bought an even simpler type called the Zeo, which is a

> headband you wear at night. The study using the equipment that was

> shipped to me and the Zeo both showed that I was not getting down into

> a deep level of sleep very often. So I was sleeping, but not getting

> deep enough sleep to get well-rested. At Dr Klimas' suggestion, I had

> a dental " appliance " made, a mouthpiece that holds my jaw in a

> position that helps counteract sleep apnea. This sort of mouthpiece

> wouldn't help enough with severe sleep apnea, but is helpful for mild

> apnea. It has taken some getting used to, but I think it has in fact

> been helping me sleep a little better. Not a panacea, of course

> (wouldn't that be nice!).

>

> Sorry I couldn't help more.

>

> Marcia on

> in Salem, Massachusetts

>

>

>

>

> On Jan 7, 2012, at 12:52 AM, Kendra wrote:

>

> > Marcia

> >

> > Did Medicare cover the cytokine panel? What lab/cytokine panel did you

> > do? I was researching them and I would like to dot he Pharmasan

> > panel that

> > Neurorelief.com? talks about. My hormones are really messed up and I

> > can

> > hardly sleep at all. My DHEA was below normal and other hormones are

> > low

> > too.

> >

> > Kendra

> >

> > On Fri, Jan 6, 2012 at 2:48 PM, Marcia on

> > <mmorrison@...> wrote:

> >

> > > Dr Klimas also uses a cytokine panel. My results were sky high about

> > > 15 months ago, and have improved after taking Imunovir (an immune

> > > modulator Rx'd by Dr Klimas, which I order from Canada).

> > >

> > > Unfortunately, so far improved blood test results have not

> > resulted in

> > > an improvement in how I feel, but maybe there's a lag between one

> > step

> > > and the next. While on Imunovir, I definitely feel " herx " or die-off

> > > symptoms, which in my case is me feeling kind of like I've got the

> > flu

> > > all the time. I'm about to start a 3-month stretch off Imunovir,

> > > before taking another 3 month course. I'm looking forward to

> > seeing if

> > > I feel any better once I'm not dealing with herx symptoms.

> > >

> > > M.

> > >

> > > On Jan 4, 2012, at 2:58 PM, Al wrote:

> > >

> > > > Hi Steve

> > > >

> > > > Dr. Bhakta uses a cytokine panel by Neuroscience that tests

> > > immune function.

> > > >

> >

>