Re: Re: Why do CFS symptoms fluctuate so much? My answer: VZV

[Guest guest]

lol i see you have really thought this through! i saw dr. lerner for almost 2

yrs and was on his protocol for 3 yrs, which involved fairly large doses of

valtrex (4 g/day) and valcyte, but it didnt really help. you're right, i dont

see much research on VZV and CFS. i do remember having my VZV antibodies tested

....i cannot remember the results. i intuitively feel that something is causing

the immunosuppression (or something) which allows all herpes viruses to

reactivate, in many diseases, including MS. XMRV may not be it, but i think its

likely a retrovirus. personally, i feel that the retrovirus is maily

transmitted during the acute phase, then usually leaves the blood in favor of

tissue. why there are supposedly so many healthy, infected people, is a good

question. herpes viruses have been living in harmony with humans for so long, i

just don't think that, unless there is some particular genetic defect, these

viruses would be causing a disease this

debilitating.

>

> CFS patients have been using anti herpes drugs for years and doctors have been

testing VZV antibodies in CFS for years, too.

>  

> i'm pretty sure a retrovirus is still the root cause though, cuz everyone has

these herpes viruses and they are usually just fine.

>

>

Sue, if you can point me to some articles where researchers looked for VZV or

VZV antibodies in patients with CFS, I would really appreciate it. When I wrote

my article for Medical Hypotheses, I looked and looked for such research, and

found almost nothing.

Even if there is research on VZV antibodies in CFS, there is the problem that

since just about everyone is carrying VZV (and EBV, and Herpes 1), just about

everyone has antibodies to those viruses, whether they have an active infection

or not. (There are additional problems with looking at herpes antibodies,

including the fact that the human body seems to make antibodies to multiple

different herpes viruses as soon as one herpes virus reactivates.)

What I would like researchers to do is look for actual VZV *particles* in CFS

patients, not VZV antibodies. I would also like researchers to look in the

saliva and tears of CFS patients, not the blood, because long-term VZV

infections do not put detectible VZV particles into the blood. VZV is being

found in the saliva and tears of Multiple Sclerosis patients with relapses, so

looking at the tears and saliva of relapsing CFS patients might be especially

useful.

I don't see the fact that most people with VZV are healthy as evidence against

the theory that VZV causes CFS. Let me point out that XMRV was also found mostly

in healthy people. The Whittemore Institute found XMRV in something

like 3% of healthy Americans, which is about 10 million people. Even if every

American with CFS had XMRV, that would still be only maybe 1 million people. So,

that would mean 10 million people with XMRV were healthy, and 1 million people

with XMRV had CFS. In other words, by WPI's own figures, most people with XMRV

were just fine. Yet, that didn't stop them from proposing XMRV as the cause of

CFS, even though they had no theory of why most people with XMRV were healthy.

In contrast, medical science KNOWS that VZV can suddenly make people sick even

though they have carried the virus for decades with no problems. This has been

known since about 1940, and it was proposed as early as the 1ate 1800s. Most

Americans carry VZV and currently have no symptoms from it, but without

treatment (such as shingles vaccine), 1 in 3 Americans will develop

shingles--that is, after having VZV with no problems for decades, their VZV will

suddenly reactivate and make them sick.

As for CFS patients taking anti-herpes drugs, the drugs do seem to help some.

Nothing else has ever been shown in well-designed studies to help. The problem

is, the drugs we have now are only a little effective against VZV. In shingles,

for example,Valtrex only reduces the duration of sores from an average of 60

days to an average of 40 days. It helps, but doesn't cure. Plus, the doses

needed in CFS patients may be huge. I take 8 GRAMS a day of Valtrex. Most CFS

patients on Valtrex seem to take 1 gram, or maybe half a gram, a day.

There certainly are many researchers who think that CFS is caused by some new

virus. But, CFS doesn't have a clear pattern of contagion, which new viruses

usually do. In swine flu, for example, there was an outbreak in Mexico, and then

some NYC students traveling in Mexico caught it, and when they returned to NYC,

there was an outbreak in NYC. This generally isn't how CFS works. Although there

have been CFS incidents such as the Incline Village Outbreak, most cases of CFS

are sporadic. This argues strongly against CFS being caused by a new virus.

Unfortunately for CFS patients, researchers are much more interested in finding

a new virus than just finding a new set of symptoms caused by an old virus.

Finding a new virus makes you famous. Finding new symptoms caused by an old

virus generally doesn't. So, CFS researchers have again and again proposed new

viruses as the possible cause of CFS, none of which have panned out. I wish they

would take just one cent for every dollar used to research XMRV, and use it to

look for VZV in CFS patients.

-- Judith Shapiro

[Guest guest]

i forgot to mention....although antiherpetic drugs have been shown to help

people with CFS, the underlying immune problems in CFS (NK cell function, for

example) do not improve on these drugs.

>

> CFS patients have been using anti herpes drugs for years and doctors have been

testing VZV antibodies in CFS for years, too.

>  

> i'm pretty sure a retrovirus is still the root cause though, cuz everyone has

these herpes viruses and they are usually just fine.

>

>

Sue, if you can point me to some articles where researchers looked for VZV or

VZV antibodies in patients with CFS, I would really appreciate it. When I wrote

my article for Medical Hypotheses, I looked and looked for such research, and

found almost nothing.

Even if there is research on VZV antibodies in CFS, there is the problem that

since just about everyone is carrying VZV (and EBV, and Herpes 1), just about

everyone has antibodies to those viruses, whether they have an active infection

or not. (There are additional problems with looking at herpes antibodies,

including the fact that the human body seems to make antibodies to multiple

different herpes viruses as soon as one herpes virus reactivates.)

What I would like researchers to do is look for actual VZV *particles* in CFS

patients, not VZV antibodies. I would also like researchers to look in the

saliva and tears of CFS patients, not the blood, because long-term VZV

infections do not put detectible VZV particles into the blood. VZV is being

found in the saliva and tears of Multiple Sclerosis patients with relapses, so

looking at the tears and saliva of relapsing CFS patients might be especially

useful.

I don't see the fact that most people with VZV are healthy as evidence against

the theory that VZV causes CFS. Let me point out that XMRV was also found mostly

in healthy people. The Whittemore Institute found XMRV in something

like 3% of healthy Americans, which is about 10 million people. Even if every

American with CFS had XMRV, that would still be only maybe 1 million people. So,

that would mean 10 million people with XMRV were healthy, and 1 million people

with XMRV had CFS. In other words, by WPI's own figures, most people with XMRV

were just fine. Yet, that didn't stop them from proposing XMRV as the cause of

CFS, even though they had no theory of why most people with XMRV were healthy.

In contrast, medical science KNOWS that VZV can suddenly make people sick even

though they have carried the virus for decades with no problems. This has been

known since about 1940, and it was proposed as early as the 1ate 1800s. Most

Americans carry VZV and currently have no symptoms from it, but without

treatment (such as shingles vaccine), 1 in 3 Americans will develop

shingles--that is, after having VZV with no problems for decades, their VZV will

suddenly reactivate and make them sick.

As for CFS patients taking anti-herpes drugs, the drugs do seem to help some.

Nothing else has ever been shown in well-designed studies to help. The problem

is, the drugs we have now are only a little effective against VZV. In shingles,

for example,Valtrex only reduces the duration of sores from an average of 60

days to an average of 40 days. It helps, but doesn't cure. Plus, the doses

needed in CFS patients may be huge. I take 8 GRAMS a day of Valtrex. Most CFS

patients on Valtrex seem to take 1 gram, or maybe half a gram, a day.

There certainly are many researchers who think that CFS is caused by some new

virus. But, CFS doesn't have a clear pattern of contagion, which new viruses

usually do. In swine flu, for example, there was an outbreak in Mexico, and then

some NYC students traveling in Mexico caught it, and when they returned to NYC,

there was an outbreak in NYC. This generally isn't how CFS works. Although there

have been CFS incidents such as the Incline Village Outbreak, most cases of CFS

are sporadic. This argues strongly against CFS being caused by a new virus.

Unfortunately for CFS patients, researchers are much more interested in finding

a new virus than just finding a new set of symptoms caused by an old virus.

Finding a new virus makes you famous. Finding new symptoms caused by an old

virus generally doesn't. So, CFS researchers have again and again proposed new

viruses as the possible cause of CFS, none of which have panned out. I wish they

would take just one cent for every dollar used to research XMRV, and use it to

look for VZV in CFS patients.

-- Judith Shapiro

[Guest guest]

why cant XMRV not explain the outbreaks? why can't it be that it is

transmissable via saliva, during the acute phase, like many other infections? it

isnt too complex of a virus; perhaps it can live in saliva and places HIV

cannot.

From: RoosterRick <rickstr420@...>

Subject: Re: Why do CFS symptoms fluctuate so much? My

answer: VZV

Received: Saturday, June 4, 2011, 11:51 AM

 

From an infectious disease standpoint, less than 10% of CFS cases are due to a

Herpes virus, this is why Dr Montoya at Stanford has a hard time finding

patients that meet this criteria. Then he uses a herpes antiviral to treat. XMRV

is having a hard time being proven by subsequent studies. It is also very

unlikely, How would you explain Cohorts of people developing CFS, unless they

were all having sex with each other? There was also a Cohort of patients at a

hospital that all developed CFS during their stay, XMRV cannot explain that.

What about children getting CFS? XMRV cannot explain that either. Some might

argue its an " Endogenous virus " , but we all have retroviruses in our DNA our

ancestors came into contact with throughout thousands of years of history. Maybe

this is why the WPI is finding it in very small amounts that are difficult to

detect, but even HIV in the millions of viruses per ml/blood is still not enough

to cause symptoms. Another thing

XMRV cant explain is, Why do some people develop CFS after a severe car

accident? Let me tell you....

Dr Chia has been researching CFS for about 15 years now. His research

focuses on sackie B entering the digestive tract though contaminated

food/water. It then moves on to infect the vagus nerve and travels up to the

brain stem, just like Enterovirus 71, which is what the Asian countries are

dealing with right now. An infected brain stem cannot function correctly. Our

brain stem is responsible for blood pressure, heart rate, immune system

regulation, digestion, breathing, autonomic functions, etc. You can easily

picture how Bells Palsy is an infected facial nerve, now imagine what an

infected brain stem feels like, CFS. sackie B easily explains clusters of

people getting sick, contaminated water supply or food.

Why do people sometimes develop CFS after a Severe car accident? Simple, trauma

to the brain stem. The brain stem is what is very highly responsible for our

symptoms. Dr Chia has also biopsied the brain stem of suicide CFS patients and

the sackie B virus is there inside the nerve cells where the immune system

cannot reach. Nerve cells are " immuno privilaged " meaning the immune system is

naturally programmed not to attack nerve cells. We have the same nerve cells for

life, but other cells multiply and die off. No one seems to be supporting Dr

Chias work, it is also Non controversial and makes the most sense. The sackie

B virus also " fluctuates " , my initial blood titer was 1:640, then it was 1:320,

now its back up to 1:640. By PCR I have 355 RNA copies/ml blood. Thats average.

Some very severe patients have 2000 RNA copies per ml/blood....

support....

WWW.ENTEROVIRUSFOUNDATION.ORG

WWW.EVMEDRESEARCH.COM

-Rick

>

> One of the tough things about CFS is that its symptoms tend to get worse and

then better all on their own. If you decide to try a new treatment because you

are feeling really miserable, and then feel better a little while later, there

is really no way to tell if the treatment worked, or if you were just going to

get better on your own. Similarly, if you start a new treatment and suddenly

feel worse, there is really no way to tell whether the treatment is causing side

effects, or if your CFS just got worse on its own. It's extremely unfair that

CFS patients are left to their own devices to try to find treatments, because

with a disease that varies so much on its own, controlled studies are by far the

best hope of finding a cure.

>

> Why do CFS symptoms fluctuate so much? Well, I think it's because CFS is

caused by a herpes infection. (To be precise, I believe that herpes causes many,

but not necessarily all, cases of CFS. It may be that different subtypes of CFS

have different causes.) Herpes infections just naturally flare up when the

immune system is weak, which could cause CFS to get better or worse for

seemingly no reason.

>

> Almost everyone on earth is infected with one or more herpes viruses, and once

you get infected with a herpes virus, it's with you for life, because the immune

system can not completely eradicate herpes viruses. Some herpes viruses hide

from the immune system by infecting nerve cells. Many components of the immune

system are not active within nervous tissue, because nerve cells are so delicate

that strong immune activity would kill them. Herpes Simplex 1 (the cause of cold

sores), Herpes Simplex 2 (genital herpes) and Varicella-Zoster Virus (a.k.a

Herpes 3, the cause of chicken pox and shingles) all hide within nerve cells.

>

> Other herpes viruses avoid the immune system by living within the immune cells

themselves (although they don't destroy the immune system to the extent that HIV

does.) For example, Epstein-Barr virus (a.k.a Herpes 4, which causes most cases

of mononucleosis and was originally thought to be the cause of CFS) lives inside

white blood cells, as does Cytomegalovirus (a.k.a Herpes 5.) A few herpes

viruses, such as Herpes 6, can live within both nerve cells and white blood

cells.

>

> Because the immune system can't completely get rid of herpes viruses, it has

to constantly battle to keep them " latent. " That is, the immune system is in a

constant war to keep the herpes viruses from replicating and making the person

sick. People with severely weakened immune systems often get terrible herpes

infections. A good example is Herpes 8--it often causes fatal tumors (Kaposi's

Sarcoma) in people with untreated AIDS, but people with healthy immune systems

almost never get Kaposi's Sarcoma.

>

> Even mild impairments to the immune system can cause a herpes flare-up

(although generally much milder ones than occur with AIDS.) Whenever something

reduces immunity--be it another illness, emotional stress, or long hours at

work--herpes viruses can start replicating.

> For example, getting a cold can weaken the immune system enough that Herpes

Simplex 1 activates and causes painful mouth sores. (That's why the sores are

called " cold sores. " )

>

> So, if a herpes virus is causing your CFS, the slightest weakening of your

immune response (resulting from, say, successfully fighting off a cold virus

that you didn't even know you were exposed to) could cause the CFS to suddenly

become worse. Similarly, slight improvements to the immune system (resulting

from unknowingly eating something that stimulates immunity, say) could make the

CFS much better. Also, eating something with anti-herpes properties might reduce

the infection, but we really don't know all the foods that have anti-herpes

properties.

>

> Which herpes virus do I think causes CFS? Herpes 3, Varicella-Zoster Virus

(aka VZV), a virus carried by almost all people who live in areas with cold

winters (and about half of the rest of the human race.) I wrote a paper that was

published in 2009 in the journal Medical Hypothesis, explaining why I think VZV

causes CFS. The abstract is at http://www.ncbi.nlm.nih.gov/pubmed/19520522

> I'll be happy to send a copy of the full article to anyone here that wants

one.

>

> Here are the main reasons why I think VZV causes CFS:

>

> 1) VZV is known to suddenly cause illness, often severe illness, even in

seemingly healthy people. Although the initial infection with VZV just causes

chicken pox, the virus often returns suddenly decades later, causing the very

painful condition called shingles (shingles is like having really severe cold

sores over a wide area of your skin), as well as a number of other, less common

illnesses. With most herpes infections, the initial bout of illness is the worst

and later bouts of the same virus are milder (unless the immune system gets

seriously damaged.) VZV is the only herpes virus where the virus comes back

*worse* in healthy people. VZV infection would therefore explain why CFS often

seemingly appears out of nowhre.

>

> 2) Because VZV attacks the nervous system, VZV infection would explain why CFS

patients sometimes have neurological symptoms. Also, the symptoms of VZV are

extremely variable, depending on which parts of the nervous system are attacked.

(For example, shingles patients just about always have severe pain, but if the

facial nerves are attacked, they may also have temporary blindness, severe

vertigo, or facial paralysis. Other herpes viruses are not as variable in their

symptoms.) Therefore, VZV infection would explain why different CFS patients

have such different symptoms.

>

> 3) People who get shingles are often extremely fatigued, another way in which

VZV infection is known to be like CFS. The cause of " shingles fatigue " is not

known, but could easily be explained if their VZV were attacking the autonomic

ganglia, the nerve cells that control the internal organs. VZV is known to live

in the autonomic ganglia (and other herpes viruses are not known to live there.)

>

> 4) The autonomic symptoms seen in CFS, such as orthostatic hypotension, would

also be explained if VZV caused CFS, since VZV is known to live in the autonomic

ganglia.

>

> 5) CFS is, in many ways, like a milder form of Multiple Sclerosis (MS),

another illness often characterized by extreme fatigue, variable symptoms, and

unexplained fluctuations in severity. (The reason I say that CFS is milder than

MS is because MS can cause all the symptoms that CFS patients have, but MS also

often causes paralysis and sometimes death.) One of the most promising theories

about MS is that it is caused by VZV. This theory of MS says that active VZV

replication in the spinal cord causes an immune overreaction in the spinal

tissue that further damages the nerve cells there. My theory is that CFS is

milder than MS either because A) in CFS, the VZV may only be in the outer

nerves, not the spinal tissue, or because the immune system in CFS patients

doesn't overreact the way it does in MS.

>

> 6) Because it lives in the nerves, VZV is typically undetectable in the blood

(except during the initial chicken pox infection.) Even people who are dying of

rare VZV brain infections typically have no detectible VZV particles in their

blood. This would explain why a cause of CFS has been so hard to find.

>

> Unfortunately, VZV has received essentially ZERO attention as a possible cause

of CFS. Most doctors think of VZV reactivation as causing the extremely painful

sores of shingles, and CFS patients typically don't have painful sores. In fact,

though, severe VZV infections (including the rare fatal VZV infections of the

brain) can occur without any sores.

>

> When my article can out, I wrote to about 15 of the leading CFS researchers

telling them about my theory. Almost none of them wrote back, and those that did

generally didn't seem to understand my theory.

>

> I also wrote to some leading VZV researchers. They were interested in my

theory, but had no way to test it because they had no access to CFS patients.

>

> I am hoping that when all the hoopla over XMRV dies down, someone might

finally test the theory that VZV causes CFS.

>

> Why I am telling this to people here? Mostly to encourage people here to use

anti-herpes drugs, the only treatment shown in carefully controlled studies to

help CFS. (Elderberry is really promising, too--it hasn't been tested in CFS

patients, but works in several other viruses.) I know that Epstein-Barr (Herpes

4) is largely discredited as the cause of CFS, and so far Herpes 6 & 7 have not

been shown to be the cause, either, but no one has looked at Herpes 3 (VZV)--and

it is a really, really good candidate as the cause of CFS.

>

> -- Judith

>

[Guest guest]

thanks, judith. yes....lerner made me come to his office an average of every 3

weeks, at a cost of $7-800 each time, with travel and testing. i am in canada

and my mom is nearly broke from it all. :-/

 

sue:)

From: judithshapiro <judyshapiro@...>

Subject: Re: Why do CFS symptoms fluctuate so much? My

answer: VZV

Received: Monday, June 6, 2011, 11:52 PM

 

>

> lol i see you have really thought this through! i saw dr. lerner for almost 2

yrs and was on his protocol for 3 yrs, which involved fairly large doses of

valtrex (4 g/day) and valcyte, but it didnt really help..

>

>

Sue, it must have been really frustrating to spend so much time (and maybe

money) on a protocol, and then not have it help! I saw on one of your other

posts that you have improved on antiretroviral agents. I am glad that you have

found something that helps.

It may be that some people with CFS have one cause, while other people have a

different cause. Part of my theory of CFS is that VZV is attacking the autonomic

ganglia (the nerve cells that control the internal organs.) But, there are

certainly other things that can attack the autonomic ganglia. Because the

ganglia are outside the central nervous system, they are not as well protected

as the brain and spinal cord are. This leaves the ganglia vulnerable to attack

not only from certain viruses, but from some toxins as well. If, say, the nerve

cells controlling the lungs were attacked, the symptoms could be similar,

regardless of what caused the attack.

-- Judith Shapiro

[Guest guest]

Personally, I would avoid any sort of vaccine. The effects on the immune system

are unpredictable.

Ellen

Re: Why do CFS symptoms fluctuate so much? My

answer: VZV

Judith,

My doctor read your post and suggested trying the shingles vaccine. Have you

read anything about it?

I'm thinking about giving it a try. At this point my Lyme is all flared up

again so I'm sure things are taking advantage of my immune system.

I just stopped valcyte and acyclovir after 6 months.. I started feeling like I

was herxing every couple days and I'm pretty sure it was just the antivirals. I

drink a lot of water so I'm pretty sure that's not the issue. In any case it

just seems like it's a little too much to handle right now. So we're going to

try something else.

best

r

.