Re: OT: Chronic Fatigue Sydrome is a virus

[Guest guest]

Amazing the damage that viruses do to us.

Terry

OT: Chronic Fatigue Sydrome is a virus

Evidence found that CFS has a viral basis:

http://www.nytimes.com/2009/10/09/health/research/09virus.html?em

....An article published online Thursday in the journal Science reports that 68 of 101 patients with the syndrome, or 67 percent, were infected with an infectious virus, xenotropic murine leukemia virus-related virus, or XMRV. By contrast, only 3.7 percent of 218 healthy people were infected. Continuing work after the paper was published has found the virus in nearly 98 percent of about 300 patients with the syndrome, said Dr. Judy A. Mikovits, the lead author of the paper.

XMRV is a retrovirus, a member of the same family of viruses as the AIDS virus. These viruses carry their genetic information in RNA rather than DNA, and they insert themselves into their hosts’ genetic material and stay for life...

Mara

[Guest guest]

Amazing the damage that viruses do to us.

Terry

OT: Chronic Fatigue Sydrome is a virus

Evidence found that CFS has a viral basis:

http://www.nytimes.com/2009/10/09/health/research/09virus.html?em

....An article published online Thursday in the journal Science reports that 68 of 101 patients with the syndrome, or 67 percent, were infected with an infectious virus, xenotropic murine leukemia virus-related virus, or XMRV. By contrast, only 3.7 percent of 218 healthy people were infected. Continuing work after the paper was published has found the virus in nearly 98 percent of about 300 patients with the syndrome, said Dr. Judy A. Mikovits, the lead author of the paper.

XMRV is a retrovirus, a member of the same family of viruses as the AIDS virus. These viruses carry their genetic information in RNA rather than DNA, and they insert themselves into their hosts’ genetic material and stay for life...

Mara

[Guest guest]

I thought they linked CFS with Epstein Barr Virus?

Jodi

[Guest guest]

This was a much older theory. I've had CFS at least 30 years and I

remember that theory from way back when, but then I think it fell into

disrepute, or else has been ignored becuase not everyone or even most

with CFS seemed to have that link.

I thought they linked CFS with Epstein Barr Virus?

Jodi

[Guest guest]

Which is very interesting. I know the connection is there with a lot of

people. But I had mono twice and have never tested positive for

Epstein Barr. Go figure.

>I thought they linked CFS with Epstein Barr Virus?

They did, and in point of fact, my husband has Chronic Fatigue which is linked with both Epstein-Barr and the so-called post-mono fatigue.

Unsurprisingly, the closer he sticks to SCD, the better he

feels.

— Marilyn

[Guest guest]

Which is very interesting. I know the connection is there with a lot of

people. But I had mono twice and have never tested positive for

Epstein Barr. Go figure.

>I thought they linked CFS with Epstein Barr Virus?

They did, and in point of fact, my husband has Chronic Fatigue which is linked with both Epstein-Barr and the so-called post-mono fatigue.

Unsurprisingly, the closer he sticks to SCD, the better he

feels.

— Marilyn

[Guest guest]

In my twenties I was diagnosed with Epstein-Barr syndrome and cytomegalovirus,

which is mono related. I was so tired it was an effort to put one foot in front

of the other. I too have heard these viruses spoken of in same breath with

Chronic Fatigue.

>

> Which is very interesting. I know the connection

> is there with a lot of people. But I had mono

> twice and have never tested positive for Epstein Barr. Go figure.

>

> >I thought they linked CFS with Epstein Barr Virus?

> They did, and in point of fact, my husband has

> Chronic Fatigue which is linked with both

> Epstein-Barr and the so-called post-mono fatigue.

> Unsurprisingly, the closer he sticks to SCD, the better he feels.

> — Marilyn

>

[Guest guest]

In my twenties I was diagnosed with Epstein-Barr syndrome and cytomegalovirus,

which is mono related. I was so tired it was an effort to put one foot in front

of the other. I too have heard these viruses spoken of in same breath with

Chronic Fatigue.

>

> Which is very interesting. I know the connection

> is there with a lot of people. But I had mono

> twice and have never tested positive for Epstein Barr. Go figure.

>

> >I thought they linked CFS with Epstein Barr Virus?

> They did, and in point of fact, my husband has

> Chronic Fatigue which is linked with both

> Epstein-Barr and the so-called post-mono fatigue.

> Unsurprisingly, the closer he sticks to SCD, the better he feels.

> — Marilyn

>

[Guest guest]

In my twenties I was diagnosed with Epstein-Barr syndrome and cytomegalovirus,

which is mono related. I was so tired it was an effort to put one foot in front

of the other. I too have heard these viruses spoken of in same breath with

Chronic Fatigue.

>

> Which is very interesting. I know the connection

> is there with a lot of people. But I had mono

> twice and have never tested positive for Epstein Barr. Go figure.

>

> >I thought they linked CFS with Epstein Barr Virus?

> They did, and in point of fact, my husband has

> Chronic Fatigue which is linked with both

> Epstein-Barr and the so-called post-mono fatigue.

> Unsurprisingly, the closer he sticks to SCD, the better he feels.

> — Marilyn

>

[Guest guest]

Maybe you didn't have mono, in that case. The presence of mono is determined

via a test for the Epstein Barr virus. There are some other nasty,

long-lingering viruses out there, too, of course.

Jill

>

> Which is very interesting. I know the connection

> is there with a lot of people. But I had mono

> twice and have never tested positive for Epstein Barr. Go figure.

>

> >I thought they linked CFS with Epstein Barr Virus?

> They did, and in point of fact, my husband has

> Chronic Fatigue which is linked with both

> Epstein-Barr and the so-called post-mono fatigue.

> Unsurprisingly, the closer he sticks to SCD, the better he feels.

> — Marilyn

>

[Guest guest]

Maybe you didn't have mono, in that case. The presence of mono is determined

via a test for the Epstein Barr virus. There are some other nasty,

long-lingering viruses out there, too, of course.

Jill

>

> Which is very interesting. I know the connection

> is there with a lot of people. But I had mono

> twice and have never tested positive for Epstein Barr. Go figure.

>

> >I thought they linked CFS with Epstein Barr Virus?

> They did, and in point of fact, my husband has

> Chronic Fatigue which is linked with both

> Epstein-Barr and the so-called post-mono fatigue.

> Unsurprisingly, the closer he sticks to SCD, the better he feels.

> — Marilyn

>

[Guest guest]

> I thought they linked CFS with Epstein Barr Virus?

>

> Jodi

Not only EBV and CMV but also HHV-6 (human herpes virus 6) have been associated

with CFS. In a recent study at Stanford U they tested an anti-viral in CFS

patients with high titers of EBV and HHV-6, with some success. Many people have

antibodies to these viruses which show that there has been widespread exposure

at some point, but it's only when the antibody titers get really high that they

seem to cause problems. It may be due to an underlying immune disorder, or

maybe the immune problem is caused by the viruses. Nobody knows yet. What's

different about the XMRV is that it's a retrovirus, like HIV, and that this new

study showed such a high percentage of CFS patients (as well as some

fibromyalgia patients) carrying it compared to healthy people.

BTW, I haven't found that SCD has helped my CFS/FMS symptoms, which is

disappointing!

Debbie T (SCD 10/06, UC 29 yrs)

[Guest guest]

I haven't been diagnosed with CFS, but fatigue was actually the main reason I

started SCD. Unfortunately, it hasn't helped my fatigue either. I was thinking

today about when the fatigue got bad, and it was almost 7 years ago when I got

valley fever. I fear that it may have done something to my body that will keep

me from ever beating the fatigue problem :-(.

Holly

Crohn's

SCD 12/01/08

>

>

>

>

> > I thought they linked CFS with Epstein Barr Virus?

> >

> > Jodi

>

> Not only EBV and CMV but also HHV-6 (human herpes virus 6) have been

associated with CFS. In a recent study at Stanford U they tested an anti-viral

in CFS patients with high titers of EBV and HHV-6, with some success. Many

people have antibodies to these viruses which show that there has been

widespread exposure at some point, but it's only when the antibody titers get

really high that they seem to cause problems. It may be due to an underlying

immune disorder, or maybe the immune problem is caused by the viruses. Nobody

knows yet. What's different about the XMRV is that it's a retrovirus, like HIV,

and that this new study showed such a high percentage of CFS patients (as well

as some fibromyalgia patients) carrying it compared to healthy people.

>

> BTW, I haven't found that SCD has helped my CFS/FMS symptoms, which is

disappointing!

>

> Debbie T (SCD 10/06, UC 29 yrs)

>

[Guest guest]

At 12:34 AM 10/14/2009, you wrote:

I haven't been diagnosed with

CFS, but fatigue was actually the main reason I started SCD.

Unfortunately, it hasn't helped my fatigue either. I was thinking today

about when the fatigue got bad, and it was almost 7 years ago when I got

valley fever. I fear that it may have done something to my body that will

keep me from ever beating the fatigue problem :-(.

Well, my standard line these days is... if you're having chronic fatigue,

go get a sleep test, and at least rule out apnea as the cause.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

I'll have to see if my insurance covers it. The only symptom of sleep apnea I

have is fatigue, so I'd be surprised if my PCP would refer me. I don't snore or

wake up gasping, and no one has noticed that I stop breathing. My dad has sleep

apnea, and it's really obvious with his loud snorks when he stops breathing.

He's difficult and rarely wears his mask (he says it's too hot and makes his

face sweat).

Holly

Crohn's

SCD 12/01/08

> >I haven't been diagnosed with CFS, but fatigue

> >was actually the main reason I started SCD.

> >Unfortunately, it hasn't helped my fatigue

> >either. I was thinking today about when the

> >fatigue got bad, and it was almost 7 years ago

> >when I got valley fever. I fear that it may have

> >done something to my body that will keep me from

> >ever beating the fatigue problem :-(.

>

> Well, my standard line these days is... if you're

> having chronic fatigue, go get a sleep test, and

> at least rule out apnea as the cause.

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

>

[Guest guest]

I'll have to see if my insurance covers it. The only symptom of sleep apnea I

have is fatigue, so I'd be surprised if my PCP would refer me. I don't snore or

wake up gasping, and no one has noticed that I stop breathing. My dad has sleep

apnea, and it's really obvious with his loud snorks when he stops breathing.

He's difficult and rarely wears his mask (he says it's too hot and makes his

face sweat).

Holly

Crohn's

SCD 12/01/08

> >I haven't been diagnosed with CFS, but fatigue

> >was actually the main reason I started SCD.

> >Unfortunately, it hasn't helped my fatigue

> >either. I was thinking today about when the

> >fatigue got bad, and it was almost 7 years ago

> >when I got valley fever. I fear that it may have

> >done something to my body that will keep me from

> >ever beating the fatigue problem :-(.

>

> Well, my standard line these days is... if you're

> having chronic fatigue, go get a sleep test, and

> at least rule out apnea as the cause.

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

>

[Guest guest]

I'll have to see if my insurance covers it. The only symptom of sleep apnea I

have is fatigue, so I'd be surprised if my PCP would refer me. I don't snore or

wake up gasping, and no one has noticed that I stop breathing. My dad has sleep

apnea, and it's really obvious with his loud snorks when he stops breathing.

He's difficult and rarely wears his mask (he says it's too hot and makes his

face sweat).

Holly

Crohn's

SCD 12/01/08

> >I haven't been diagnosed with CFS, but fatigue

> >was actually the main reason I started SCD.

> >Unfortunately, it hasn't helped my fatigue

> >either. I was thinking today about when the

> >fatigue got bad, and it was almost 7 years ago

> >when I got valley fever. I fear that it may have

> >done something to my body that will keep me from

> >ever beating the fatigue problem :-(.

>

> Well, my standard line these days is... if you're

> having chronic fatigue, go get a sleep test, and

> at least rule out apnea as the cause.

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

>

[Guest guest]

At 01:03 AM 10/15/2009, you wrote:

I'll have to see if my insurance

covers it. The only symptom of sleep apnea I have is fatigue, so I'd be

surprised if my PCP would refer me. I don't snore or wake up gasping, and

no one has noticed that I stop breathing. My dad has sleep apnea, and

it's really obvious with his loud snorks when he stops breathing. He's

difficult and rarely wears his mask (he says it's too hot and makes his

face sweat).

I didn't have any symptoms, either. I wasn't even particularly fatigued,

except that I wasn't sleeping through the night because of pain issues.

Didn't snore. Didn't wake up gasping. What I had were lots and lots of

shallow breathing which dropped my oxygen levels into the 80s for

significant periods of time. Oxygen should be 90 or above.

If you love your father, I suggest you go over to CPAPTalk.Com and learn

how to help your Dad learn to use his mask. I hate full-face masks, but

have had to use one when I've had a respiratory infection. I put moleskin

where it contacts my skin, and the sweaty issue is not longer a

problem.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

At 01:03 AM 10/15/2009, you wrote:

I'll have to see if my insurance

covers it. The only symptom of sleep apnea I have is fatigue, so I'd be

surprised if my PCP would refer me. I don't snore or wake up gasping, and

no one has noticed that I stop breathing. My dad has sleep apnea, and

it's really obvious with his loud snorks when he stops breathing. He's

difficult and rarely wears his mask (he says it's too hot and makes his

face sweat).

I didn't have any symptoms, either. I wasn't even particularly fatigued,

except that I wasn't sleeping through the night because of pain issues.

Didn't snore. Didn't wake up gasping. What I had were lots and lots of

shallow breathing which dropped my oxygen levels into the 80s for

significant periods of time. Oxygen should be 90 or above.

If you love your father, I suggest you go over to CPAPTalk.Com and learn

how to help your Dad learn to use his mask. I hate full-face masks, but

have had to use one when I've had a respiratory infection. I put moleskin

where it contacts my skin, and the sweaty issue is not longer a

problem.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

On Thu, 15 Oct 2009 02:03:13 -0400, spookyhurst spookyhurst@...>

wrote:

> I'll have to see if my insurance covers it. The only symptom of sleep

> apnea I have is fatigue, so I'd be surprised if my PCP would refer me. I

> don't snore or wake up gasping, and no one has noticed that I stop

> breathing. My dad has sleep apnea, and it's really obvious with his loud

> snorks when he stops breathing. He's difficult and rarely wears his mask

> (he says it's too hot and makes his face sweat).

>

> Holly

> Crohn's

> SCD 12/01/08

>

While sleep apnea is possible, of course, extreme fatigue is certainly a

common symptom (or side-effect, if you will) of Crohn's.

It has for years prevented me from working full time. Taking a lot of

anti-oxidants helps. But LDN has helped far more than anything else. I

think I've said it here before: within five days of taking it my fatigue

pretty much evaporated; and evaporated is the word. It was just gone. And

still is. It's given me a new life, along with a much healed gut due to

both LDN and the diet.

n

[Guest guest]

On Thu, 15 Oct 2009 02:03:13 -0400, spookyhurst spookyhurst@...>

wrote:

> I'll have to see if my insurance covers it. The only symptom of sleep

> apnea I have is fatigue, so I'd be surprised if my PCP would refer me. I

> don't snore or wake up gasping, and no one has noticed that I stop

> breathing. My dad has sleep apnea, and it's really obvious with his loud

> snorks when he stops breathing. He's difficult and rarely wears his mask

> (he says it's too hot and makes his face sweat).

>

> Holly

> Crohn's

> SCD 12/01/08

>

While sleep apnea is possible, of course, extreme fatigue is certainly a

common symptom (or side-effect, if you will) of Crohn's.

It has for years prevented me from working full time. Taking a lot of

anti-oxidants helps. But LDN has helped far more than anything else. I

think I've said it here before: within five days of taking it my fatigue

pretty much evaporated; and evaporated is the word. It was just gone. And

still is. It's given me a new life, along with a much healed gut due to

both LDN and the diet.

n

[Guest guest]

On Thu, 15 Oct 2009 02:03:13 -0400, spookyhurst spookyhurst@...>

wrote:

> I'll have to see if my insurance covers it. The only symptom of sleep

> apnea I have is fatigue, so I'd be surprised if my PCP would refer me. I

> don't snore or wake up gasping, and no one has noticed that I stop

> breathing. My dad has sleep apnea, and it's really obvious with his loud

> snorks when he stops breathing. He's difficult and rarely wears his mask

> (he says it's too hot and makes his face sweat).

>

> Holly

> Crohn's

> SCD 12/01/08

>

While sleep apnea is possible, of course, extreme fatigue is certainly a

common symptom (or side-effect, if you will) of Crohn's.

It has for years prevented me from working full time. Taking a lot of

anti-oxidants helps. But LDN has helped far more than anything else. I

think I've said it here before: within five days of taking it my fatigue

pretty much evaporated; and evaporated is the word. It was just gone. And

still is. It's given me a new life, along with a much healed gut due to

both LDN and the diet.

n

[Guest guest]

Oh I've tried! I've sent him the link to CPAPTalk.com more than once, but he's

never gone there. I've badgered him about how it's not good for him to wear the

mask for an hour here and an hour there. He just doesn't pay any attention. Same

with the crohn's. He won't even try going gluten free to see if it would help.

My father is quite exasperating!

I'll tell him about the moleskin anyway, and hopefully he'll try it. I don't

think he's worn the mask all summer long. My mom has to wear earplugs at night.

Holly

Crohn's

SCD 12/01/08

>

>

> If you love your father, I suggest you go over to

> CPAPTalk.Com and learn how to help your Dad learn

> to use his mask. I hate full-face masks, but have

> had to use one when I've had a respiratory

> infection. I put moleskin where it contacts my

> skin, and the sweaty issue is not longer a problem.

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

>

[Guest guest]

Oh I've tried! I've sent him the link to CPAPTalk.com more than once, but he's

never gone there. I've badgered him about how it's not good for him to wear the

mask for an hour here and an hour there. He just doesn't pay any attention. Same

with the crohn's. He won't even try going gluten free to see if it would help.

My father is quite exasperating!

I'll tell him about the moleskin anyway, and hopefully he'll try it. I don't

think he's worn the mask all summer long. My mom has to wear earplugs at night.

Holly

Crohn's

SCD 12/01/08

>

>

> If you love your father, I suggest you go over to

> CPAPTalk.Com and learn how to help your Dad learn

> to use his mask. I hate full-face masks, but have

> had to use one when I've had a respiratory

> infection. I put moleskin where it contacts my

> skin, and the sweaty issue is not longer a problem.

>

>

> — Marilyn

> New Orleans, Louisiana, USA

> Undiagnosed IBS since 1976, SCD since 2001

> Darn Good SCD Cook

> No Human Children

> Shadow & Sunny Longhair Dachshund

>