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

[Guest guest]

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