Re: Rich & All: Chemo Brain injury in cancer same as CFIDS

[Guest guest]

,

Those of us who have found some level of recovery - those on longterm

antibiotics, and those like Montoya's study with antivirals - found

that normal brain function was the first thing that recovered. This

doesn't really fit with longterm brain damage.

In my subjective experience my periods of brain dysfunction felt more

like I had the flu that never quit. I am sure all of us can recall

trying to think when we were coming down with the flu. I actually had

to take an IQ test in high school while recovering from a serious

bout of flu. Needless to say, I came out looking pretty stupid. :~)

My wild guess is that the brain dysfunction of cfs is inflammation,

perhaps capillary blood flow limitation, but it doesn't seem to be

longterm or permanent damage or it would not be the first symptom to

remit.

Make sense?

a Carnes

>

> Hi, Rich & all.

>

>

>

> Saw this article and I've read a few others over the last year or so

> on cancer patients trouble with basal ganglia injury due to having

> gone through chemo therapy. This strikes me as exactly my and many

> others lingering anatomical problem with CFIDS though we've never

had

> cancer nor such therapy.

>

>

> http://www.evitamins.com/news.asp?id=535340

>

>

> A few CFS research articles at co-cure.org have discussed CFS as a

> basal ganglia dysfunction or injury to its non-motor circuit and the

> basal ganglia is thought to be central in translating thoughts to

> action, something that is quite troublesome for many former cancer

> chemo patients as well as PWCs. And along with this focal symptom,

> actions are harder, more painful and less effective when taken

> compared to controls, never mind the exhaustion issue for a

moment.

>

>

>

> Though there may well the same kind of injury surrounding, I think

> these articles hit the bulls-eye anatomically for the key CFIDS

brain

> problem I and others have. So, Rich, are you confident your

> simplified treatment for CFS, which seems to go after the bulls-eye

at

> the level of the cell for us, will heal basal ganglia injury in

PWCs?

>

>

>

> Do you think your treatment would be a good choice for those " chemo

> brain " cases that have had chemo therapy or be useful to those with

> cancer about to proceed with it?

>

>

>

>

>

[Guest guest]

Hi, a.

" pjeanneus " <pj7@...> wrote:

>

> ,

> Those of us who have found some level of recovery - those on longterm

> antibiotics, and those like Montoya's study with antivirals - found

> that normal brain function was the first thing that recovered. This

> doesn't really fit with longterm brain damage.

>

> In my subjective experience my periods of brain dysfunction felt more

> like I had the flu that never quit. I am sure all of us can recall

> trying to think when we were coming down with the flu. I actually had

> to take an IQ test in high school while recovering from a serious

> bout of flu. Needless to say, I came out looking pretty stupid. :~)

>

> My wild guess is that the brain dysfunction of cfs is inflammation,

> perhaps capillary blood flow limitation, but it doesn't seem to be

> longterm or permanent damage or it would not be the first symptom to

> remit.

>

> Make sense?

>

***Not really, for my case and many others. According to the vicious

cycle Rich is looking at and others, brain function looks like it may

be the LAST thing to recover if it truly can in CFS, not the first.

***The basal ganglia is the most vulnerable structure in the brain to

glutathione depletion be it from genetics, toxins, bacteria, virus,

coagulation problems or a combination of these. If its true that you

quickly recovered brain function via antibiotics predominantly, this

suggests to me your brain was not hit as hard or for as long term as

some of us(perhaps activated virus and genetics for glutathione

depletion are more serious and prominant in many of us).

***And it is long term endured brain injury I'm referring to which may

indeed include inflammation/limited capillary flow secondary to

cellular damage and dysfunction.

***

[Guest guest]

, just a curiosity, how long have you been ill?

Thanks,

Massimo

Re: Rich & All: " Chemo Brain " injury in cancer

same as CFIDS

Hi, a.

" pjeanneus " <pj7@...> wrote:

>

> ,

> Those of us who have found some level of recovery - those on longterm

> antibiotics, and those like Montoya's study with antivirals - found

> that normal brain function was the first thing that recovered. This

> doesn't really fit with longterm brain damage.

>

> In my subjective experience my periods of brain dysfunction felt more

> like I had the flu that never quit. I am sure all of us can recall

> trying to think when we were coming down with the flu. I actually had

> to take an IQ test in high school while recovering from a serious

> bout of flu. Needless to say, I came out looking pretty stupid. :~)

>

> My wild guess is that the brain dysfunction of cfs is inflammation,

> perhaps capillary blood flow limitation, but it doesn't seem to be

> longterm or permanent damage or it would not be the first symptom to

> remit.

>

> Make sense?

>

***Not really, for my case and many others. According to the vicious

cycle Rich is looking at and others, brain function looks like it may

be the LAST thing to recover if it truly can in CFS, not the first.

***The basal ganglia is the most vulnerable structure in the brain to

glutathione depletion be it from genetics, toxins, bacteria, virus,

coagulation problems or a combination of these. If its true that you

quickly recovered brain function via antibiotics predominantly, this

suggests to me your brain was not hit as hard or for as long term as

some of us(perhaps activated virus and genetics for glutathione

depletion are more serious and prominant in many of us).

***And it is long term endured brain injury I'm referring to which may

indeed include inflammation/limited capillary flow secondary to

cellular damage and dysfunction.

***

[Guest guest]

Over 20 years since sudden onset and possibly since birth if I include

more subtle symptoms in health that stretch back that far, I think

possible antecendants to eventual full CFS onset.

<maxupolo@...> wrote:

>

> , just a curiosity, how long have you been ill?

>

> Thanks,

>

> Massimo

>

[Guest guest]

,

I regained brain function in about 4 months on Zithromax, then took

Zithromax for about 3 years before I no longer relapsed in terms of

brain function. I still had post exertional fatigue long after brain

function stabilized.

Montoya is saying the FIRST sign of improvement he is seeing is brain

function. Those of us who took several years of antibiotic treatment

for mycoplasma (not knowing we had multiple infections) regained

normal brain function. I don't think 2-3 years of brain symptoms is a

short period of time or a minor case. I don't consider myself a minor

case - I consider myself fortunate to have gotten on longterm high

dose antibiotics for several years.

My point here is that if you can find the causes of the disease and

treat them effectively even to a minor degree BRAIN FUNCTION RETURNS.

That is my experience and also that of many others of us who hung

together on a mycoplasma email list for a few years.

I must add that those who did not seem to respond well often were on

Klonopin and other benzos and mood altering drugs. I do not think

those are safe. Quinolones in some cases can cause severe CNS damage

as well. Then you start to get confused as to what really damaged the

brain. Benzos and quinolones do permanent damage in SOME cases. We

are beginning to see studies that demonstrate this, but big pharma

doesn't want this publicized and you won't see their drug reps

telling doctors about the risk, will you? It doesn't help that a lot

of us sickies still read Dr. Cheney's comments about how Klonopin

protects the brain. Um, I beg to differ.

a Carnes

>

> Hi, a.

>

>

>

> " pjeanneus " <pj7@> wrote:

> >

> > ,

> > Those of us who have found some level of recovery - those on

longterm

> > antibiotics, and those like Montoya's study with antivirals -

found

> > that normal brain function was the first thing that recovered.

This

> > doesn't really fit with longterm brain damage.

> >

> > In my subjective experience my periods of brain dysfunction felt

more

> > like I had the flu that never quit. I am sure all of us can

recall

> > trying to think when we were coming down with the flu. I actually

had

> > to take an IQ test in high school while recovering from a serious

> > bout of flu. Needless to say, I came out looking pretty

stupid. :~)

> >

> > My wild guess is that the brain dysfunction of cfs is

inflammation,

> > perhaps capillary blood flow limitation, but it doesn't seem to

be

> > longterm or permanent damage or it would not be the first symptom

to

> > remit.

> >

> > Make sense?

> >

>

> ***Not really, for my case and many others. According to the

vicious

> cycle Rich is looking at and others, brain function looks like it

may

> be the LAST thing to recover if it truly can in CFS, not the first.

>

>

>

> ***The basal ganglia is the most vulnerable structure in the brain

to

> glutathione depletion be it from genetics, toxins, bacteria, virus,

> coagulation problems or a combination of these. If its true that

you

> quickly recovered brain function via antibiotics predominantly, this

> suggests to me your brain was not hit as hard or for as long term as

> some of us(perhaps activated virus and genetics for glutathione

> depletion are more serious and prominant in many of us).

>

>

>

> ***And it is long term endured brain injury I'm referring to which

may

> indeed include inflammation/limited capillary flow secondary to

> cellular damage and dysfunction.

>

>

>

> ***

>

[Guest guest]

Dr. Shoemaker is using low dose erythropoietin to treat people with CFS and

this is helping many people. Its a very expensive drug, though, I think, and

I don't know if insurance would cover it.

I am going to try to get more information and try it if I can, and can

somehow afford it. I can't afford to remain sick, either.

Many of the papers I've read on hippocampal progenitor cells imply that if

they all get killed off, say by a cytotoxic drug or toxin, they can't be

replaced except by other progenitor (i.e. 'stem cells' Yes, the

controversial kind..)

Other stuff I read says that antidepressants and many other drugs stimulate

hippocampal neurogenesis. But I have tried antidepressants many times and

they don't do much for my neuro issues. They also often make me feel numb.

I don't know enough about this stuff to do much more than try to read up on

it as much as I can and hope that I can do Dr. S's erythropoietin trial or

that if that doesn't some other drug works to treat the neuro issues I have

and that it hopefully doesn't cost too much.

I have had luck with some of the neuro issues (the moments of complete

confusion and sensory overload that I used to have seem to have gone away)

so clearly I am healing somewhat over time but my working memory hasn't

really gotten noticably better. It is still so bad that I can't do any of

the kind of work I used to do (programming) and I am also much slower and

clumsier physically. Rather than do things that I know I can't do (like

engage in small talk at parties, etc.) I just avoid them. I've become very

reclusive socially.

Also, I don't have the mental or physical stamina to work in any kind of

normal work situation. I feel like an old man.

[Guest guest]

I think benzos have protected my brain. I've been taken them for at

least 5 of the 7 years of lyme. I also think hyperbaric oxygen has

protected my brain.

It's better to treat the infection, but excess glutamate (and other

excitoxins) are extremely toxic to nerve cells and can kill them.

The problem with benzos is the doses are too high. I did quite well

when I was taking 1/3 of a capsule of temazepam and only at 4-6 a.m.

when I awoke (my sleep became troubled after acquiring lyme).

However, during demolition in this building, and during the time I was

recovering from the exquisitely painful fracture of my tooth socket

and the subsequent surgery, I went up to a full capsule, half to sleep

and half at 4-6 a.m. Then I noticed deleterious side effects and I

decided to withdraw. The side effects were a certain, noticeable only

to me, lack of sparkle/creative bursts in my writing and also feeling

too gluggy in the morning. I also felt I might be developing tolerance

(though it could just have been that the demolition for 18 months, and

all the incessant noise, made me so agitated that even benzos weren't

as helpful as usual). I've been doing water titration since last

August and I'm down from 30 mg to, at the moment 19.8. I plan to get

down to 5 or 10, which is equiv. to 2.5 to 5 mg of valium, and then

re-evaluate. I'm not sure that a small nighttime dose may actually be

helpful to me.

Again, they're not an ideal answer. My particular benzo is probably

milder than klonipin or xanax, and it has a short half life. In fact,

I experience inter-dose withdrawal sometimes at night. But the water

titration has been a wonderful tool. I can go down by 0.2 milligrams

if I want.

> > >

> > > ,

> > > Those of us who have found some level of recovery - those on

> longterm

> > > antibiotics, and those like Montoya's study with antivirals -

> found

> > > that normal brain function was the first thing that recovered.

> This

> > > doesn't really fit with longterm brain damage.

> > >

> > > In my subjective experience my periods of brain dysfunction felt

> more

> > > like I had the flu that never quit. I am sure all of us can

> recall

> > > trying to think when we were coming down with the flu. I actually

> had

> > > to take an IQ test in high school while recovering from a serious

> > > bout of flu. Needless to say, I came out looking pretty

> stupid. :~)

> > >

> > > My wild guess is that the brain dysfunction of cfs is

> inflammation,

> > > perhaps capillary blood flow limitation, but it doesn't seem to

> be

> > > longterm or permanent damage or it would not be the first symptom

> to

> > > remit.

> > >

> > > Make sense?

> > >

> >

> > ***Not really, for my case and many others. According to the

> vicious

> > cycle Rich is looking at and others, brain function looks like it

> may

> > be the LAST thing to recover if it truly can in CFS, not the first.

> >

> >

> >

> > ***The basal ganglia is the most vulnerable structure in the brain

> to

> > glutathione depletion be it from genetics, toxins, bacteria, virus,

> > coagulation problems or a combination of these. If its true that

> you

> > quickly recovered brain function via antibiotics predominantly, this

> > suggests to me your brain was not hit as hard or for as long term as

> > some of us(perhaps activated virus and genetics for glutathione

> > depletion are more serious and prominant in many of us).

> >

> >

> >

> > ***And it is long term endured brain injury I'm referring to which

> may

> > indeed include inflammation/limited capillary flow secondary to

> > cellular damage and dysfunction.

> >

> >

> >

> > ***

> >

>

[Guest guest]

Oh, I should add that a few months ago I read about inosine on here

and so since it is fairly affordable I went and bought a bottle of it

and have tried taking around 600 mg/day of it for two weeks on and two

weeks off several times now and I think it does help a bit with some

things.

Also, this may sound strange but I think listening to music helps

people heal. Music used to be a very big part of my life but when I

was really sick I reached a point where I just stopped listening to

it. It was annoying me for some reason, maybe because my brain

couldn't keep up with it, and also I was too tired to really engage.

I'm still too tired to really do much to pursue new music but I have

found that listening to some kinds of preprogrammed music on the radio

or off the net seems to give me a sort of lift that is therapeutic for

me and helps lift my fatigue somewhat.

[Guest guest]

I agree with your opinion of klonopin, a. When Dr. Cheney first prescribed

it for me, I thought it was a Godsend, but after years of taking it, it was

causing me all sorts of problems from headaches and insomnia to muscle spasms.

I had become dependent on it and could not stop it abruptly without severe

withdrawals. It took me two years to taper off 2mg of klonopin. I hope I'm not

one of the people who has permanent brain damage from it.

Re: Rich & All: " Chemo Brain " injury in cancer

same as CFIDS

,

I regained brain function in about 4 months on Zithromax, then took

Zithromax for about 3 years before I no longer relapsed in terms of

brain function. I still had post exertional fatigue long after brain

function stabilized.

Montoya is saying the FIRST sign of improvement he is seeing is brain

function. Those of us who took several years of antibiotic treatment

for mycoplasma (not knowing we had multiple infections) regained

normal brain function. I don't think 2-3 years of brain symptoms is a

short period of time or a minor case. I don't consider myself a minor

case - I consider myself fortunate to have gotten on longterm high

dose antibiotics for several years.

My point here is that if you can find the causes of the disease and

treat them effectively even to a minor degree BRAIN FUNCTION RETURNS.

That is my experience and also that of many others of us who hung

together on a mycoplasma email list for a few years.

I must add that those who did not seem to respond well often were on

Klonopin and other benzos and mood altering drugs. I do not think

those are safe. Quinolones in some cases can cause severe CNS damage

as well. Then you start to get confused as to what really damaged the

brain. Benzos and quinolones do permanent damage in SOME cases. We

are beginning to see studies that demonstrate this, but big pharma

doesn't want this publicized and you won't see their drug reps

telling doctors about the risk, will you? It doesn't help that a lot

of us sickies still read Dr. Cheney's comments about how Klonopin

protects the brain. Um, I beg to differ.

a Carnes

>

> Hi, a.

>

>

>

> " pjeanneus " <pj7@> wrote:

> >

> > ,

> > Those of us who have found some level of recovery - those on

longterm

> > antibiotics, and those like Montoya's study with antivirals -

found

> > that normal brain function was the first thing that recovered.

This

> > doesn't really fit with longterm brain damage.

> >

> > In my subjective experience my periods of brain dysfunction felt

more

> > like I had the flu that never quit. I am sure all of us can

recall

> > trying to think when we were coming down with the flu. I actually

had

> > to take an IQ test in high school while recovering from a serious

> > bout of flu. Needless to say, I came out looking pretty

stupid. :~)

> >

> > My wild guess is that the brain dysfunction of cfs is

inflammation,

> > perhaps capillary blood flow limitation, but it doesn't seem to

be

> > longterm or permanent damage or it would not be the first symptom

to

> > remit.

> >

> > Make sense?

> >

>

> ***Not really, for my case and many others. According to the

vicious

> cycle Rich is looking at and others, brain function looks like it

may

> be the LAST thing to recover if it truly can in CFS, not the first.

>

>

>

> ***The basal ganglia is the most vulnerable structure in the brain

to

> glutathione depletion be it from genetics, toxins, bacteria, virus,

> coagulation problems or a combination of these. If its true that

you

> quickly recovered brain function via antibiotics predominantly, this

> suggests to me your brain was not hit as hard or for as long term as

> some of us(perhaps activated virus and genetics for glutathione

> depletion are more serious and prominant in many of us).

>

>

>

> ***And it is long term endured brain injury I'm referring to which

may

> indeed include inflammation/limited capillary flow secondary to

> cellular damage and dysfunction.

>

>

>

> ***

>

[Guest guest]

What gets better first? At first I would say the brain but my brain was never as

impaired as some. But I had really had trouble talking - it seemed and still

does seem very effortful at times. I can write and read away but an hour of

talking and I'm sometimes dust.

My muscles have never recovered - those hot painful muscles come on really

strong 25 years later - but that could be the brain too - the brain after all

tells the muscles how to work.

The best evidence I have that my brain is still really getting hit is the MCS;

I think thats gotta be all brain. Its gotten better but its a matter of degree.

Cognitively I am much better though.

Cort

jill1313 <jenbooks13@...> wrote:

I think benzos have protected my brain. I've been taken them for at

least 5 of the 7 years of lyme. I also think hyperbaric oxygen has

protected my brain.

It's better to treat the infection, but excess glutamate (and other

excitoxins) are extremely toxic to nerve cells and can kill them.

The problem with benzos is the doses are too high. I did quite well

when I was taking 1/3 of a capsule of temazepam and only at 4-6 a.m.

when I awoke (my sleep became troubled after acquiring lyme).

However, during demolition in this building, and during the time I was

recovering from the exquisitely painful fracture of my tooth socket

and the subsequent surgery, I went up to a full capsule, half to sleep

and half at 4-6 a.m. Then I noticed deleterious side effects and I

decided to withdraw. The side effects were a certain, noticeable only

to me, lack of sparkle/creative bursts in my writing and also feeling

too gluggy in the morning. I also felt I might be developing tolerance

(though it could just have been that the demolition for 18 months, and

all the incessant noise, made me so agitated that even benzos weren't

as helpful as usual). I've been doing water titration since last

August and I'm down from 30 mg to, at the moment 19.8. I plan to get

down to 5 or 10, which is equiv. to 2.5 to 5 mg of valium, and then

re-evaluate. I'm not sure that a small nighttime dose may actually be

helpful to me.

Again, they're not an ideal answer. My particular benzo is probably

milder than klonipin or xanax, and it has a short half life. In fact,

I experience inter-dose withdrawal sometimes at night. But the water

titration has been a wonderful tool. I can go down by 0.2 milligrams

if I want.

> > >

> > > ,

> > > Those of us who have found some level of recovery - those on

> longterm

> > > antibiotics, and those like Montoya's study with antivirals -

> found

> > > that normal brain function was the first thing that recovered.

> This

> > > doesn't really fit with longterm brain damage.

> > >

> > > In my subjective experience my periods of brain dysfunction felt

> more

> > > like I had the flu that never quit. I am sure all of us can

> recall

> > > trying to think when we were coming down with the flu. I actually

> had

> > > to take an IQ test in high school while recovering from a serious

> > > bout of flu. Needless to say, I came out looking pretty

> stupid. :~)

> > >

> > > My wild guess is that the brain dysfunction of cfs is

> inflammation,

> > > perhaps capillary blood flow limitation, but it doesn't seem to

> be

> > > longterm or permanent damage or it would not be the first symptom

> to

> > > remit.

> > >

> > > Make sense?

> > >

> >

> > ***Not really, for my case and many others. According to the

> vicious

> > cycle Rich is looking at and others, brain function looks like it

> may

> > be the LAST thing to recover if it truly can in CFS, not the first.

> >

> >

> >

> > ***The basal ganglia is the most vulnerable structure in the brain

> to

> > glutathione depletion be it from genetics, toxins, bacteria, virus,

> > coagulation problems or a combination of these. If its true that

> you

> > quickly recovered brain function via antibiotics predominantly, this

> > suggests to me your brain was not hit as hard or for as long term as

> > some of us(perhaps activated virus and genetics for glutathione

> > depletion are more serious and prominant in many of us).

> >

> >

> >

> > ***And it is long term endured brain injury I'm referring to which

> may

> > indeed include inflammation/limited capillary flow secondary to

> > cellular damage and dysfunction.

> >

> >

> >

> > ***

> >

>

---------------------------------

You snooze, you lose. Get messages ASAP with AutoCheck

in the all-new Beta.

[Guest guest]

Hi, a.

<pj7@...> wrote:

>

> ,

> I regained brain function in about 4 months on Zithromax, then took

> Zithromax for about 3 years before I no longer relapsed in terms of

> brain function. I still had post exertional fatigue long after brain

> function stabilized.

>

> Montoya is saying the FIRST sign of improvement he is seeing is brain

> function.

***He can't be talking CFS, at least not one of the more common

subsets. On the face of it that would be a ridiculous statement if

CFS indeed is what he is referring to, and the effectiveness of

antibiotics used short term or long has not shown to be very effective

for either CFS or Chronic Lyme, though there are exceptions as you've

experienced.

Those of us who took several years of antibiotic treatment

> for mycoplasma (not knowing we had multiple infections) regained

> normal brain function.

***I didn't nor have many PWCs that I know who did had this experience

you've had with antibiotics. Published research and CFS patient

organizations don't show abx as very benefitial for most either,

though, again, there are exceptions and abx shouldn't be disgarded as

a potential treatment for some, the subsets issue is real.

I don't think 2-3 years of brain symptoms is a

> short period of time or a minor case. I don't consider myself a minor

> case - I consider myself fortunate to have gotten on longterm high

> dose antibiotics for several years.

***Who said or even implied you're CFS is minor? Or even your brain

symptoms as minor? I suggested your brain may not have been hit as

hard as others of us. Three years is long, 20+ years of unrelieved

brain injury is a good argument that this may be a bit worse

situation, don't ya think?

> My point here is that if you can find the causes of the disease and

> treat them effectively even to a minor degree BRAIN FUNCTION RETURNS.

> That is my experience and also that of many others of us who hung

> together on a mycoplasma email list for a few years.

***Good for you. I and many others are in a different camp of

severity it sounds like to me. I certainly flat lined my mycoplasma

infections by abx use yet felt zero difference to brain symptoms.

***Something else is going on, more upstream and closer to cause, than

such infections in our CFS.

>

> I must add that those who did not seem to respond well often were on

> Klonopin and other benzos and mood altering drugs.

***Klonopin is probably the least addictive of their class and

certainly helps bide time in CFS as one is going for cure. And FWIW,

my brain injury and failed abx treatments for my CFS happened before I

ever used very low dose Klonopin to aid sleep.

I do not think

> those are safe.

***This depends on the individual. For some, they're safe.

Quinolones in some cases can cause severe CNS damage

> as well. Then you start to get confused as to what really damaged the

> brain. Benzos and quinolones do permanent damage in SOME cases. We

> are beginning to see studies that demonstrate this, but big pharma

> doesn't want this publicized and you won't see their drug reps

> telling doctors about the risk, will you? It doesn't help that a lot

> of us sickies still read Dr. Cheney's comments about how Klonopin

> protects the brain. Um, I beg to differ.

>

> a Carnes

***I suspect he's right for most. I agree that big pharma is not our

friend and too often works against our best interests.

***

[Guest guest]

Hi, Livesimply.

<quackadillian@...> wrote:

It is still so bad that I can't do any of

> the kind of work I used to do (programming) and I am also much

slower and

> clumsier physically. Rather than do things that I know I can't do (like

> engage in small talk at parties, etc.) I just avoid them. I've

become very

> reclusive socially.

>

> Also, I don't have the mental or physical stamina to work in any kind of

> normal work situation. I feel like an old man.

***These are brain injury symptoms that suggest a basal ganglia focal

dysfunction, just like " chemo brain " in cancer patients.

***

[Guest guest]

a, I missed adding that Montoya works at Stanford, very much

traditional non-believers in CFS, and valcyte is big pharma, don't

know how much they're paying him. His results in those with chronic

fatigue or CFS/ME are also extremely new, preliminary, and have a long

ways to go to see if they'll stick.

I highly doubt it given so many things like the ampligen failure which

touted, and indeed had similar early results, happened, but now it's

fairly clear those were " head-fakes " and not a surprise that they

failed or at least taught many of us that the root cause of CFS was

not really being addressed. I hope for the best for those being

treated by him, but it doesn't look good, IMO.

[Guest guest]

I would suggest you look this drug up on Wikipedia before you pursue it. I have

no time to investigate just how serious the problems with this drug are for you,

but there definitely are warnings associated w. it.

I looked it up because something in my gut said to.

Taking a " trial, " of a drug, in our case especially, can be very risky, even

though we get used to hearing that word.

You might want to know how long Dr. S. has been using it.

Adrienne

Re: Re: Rich & All: " Chemo Brain " injury in

cancer same as CFIDS

Dr. Shoemaker is using low dose erythropoietin to treat people with CFS and

this is helping many people. Its a very expensive drug, though, I think, and

I don't know if insurance would cover it.

I am going to try to get more information and try it if I can, and can

somehow afford it. I can't afford to remain sick, either.

Many of the papers I've read on hippocampal progenitor cells imply that if

they all get killed off, say by a cytotoxic drug or toxin, they can't be

replaced except by other progenitor (i.e. 'stem cells' Yes, the

controversial kind..)

Other stuff I read says that antidepressants and many other drugs stimulate

hippocampal neurogenesis. But I have tried antidepressants many times and

they don't do much for my neuro issues. They also often make me feel numb.

I don't know enough about this stuff to do much more than try to read up on

it as much as I can and hope that I can do Dr. S's erythropoietin trial or

that if that doesn't some other drug works to treat the neuro issues I have

and that it hopefully doesn't cost too much.

I have had luck with some of the neuro issues (the moments of complete

confusion and sensory overload that I used to have seem to have gone away)

so clearly I am healing somewhat over time but my working memory hasn't

really gotten noticably better. It is still so bad that I can't do any of

the kind of work I used to do (programming) and I am also much slower and

clumsier physically. Rather than do things that I know I can't do (like

engage in small talk at parties, etc.) I just avoid them. I've become very

reclusive socially.

Also, I don't have the mental or physical stamina to work in any kind of

normal work situation. I feel like an old man.

[Guest guest]

, I will try to make one point clear and simple. The so-called

brain damage in cfs is not permanent damage in the cases I have seen.

I am not debating whether antibiotics or Valcyte or Ampligen will

CURE cfs. My point is that when a patient recovers at all, to some

level, the first thing that improves is brain function. That is what

Montoya is saying. That is what I have seen personally and in other

patients who recovered to some level.

Let me just add a couple of examples. My son become suddenly ill at

age 30 with severe brain symptoms. His MRI showed areas of his brain

that were damaged even though he only had symptoms for about two

weeks before diagnosis and treatment. (My MRI does not show any

damage.) Within about one month of starting an antibiotic for

borrelia he was back to work and is currently, 3 years later

traveling all over China doing business.

I know of patients with Alzheimers who got on antibiotics for

pneumonia. Within a day or two their brain function improved. Please,

I am not suggesting that a simple course of antibiotics will cure AD

or cfs or Lyme. I am saying that brain damage may not be permanent,

and that it clears rather quickly in a lot of cases.

I understand that some people must take Klonopin to survive. It is

not a cure, it does not fix the problem, if the problem is

inflammation due to several chronic infections. My personal

experience is that I will tolerate the symptoms for a LONG time

before I will take something paleative which can have worse effects

than the disease.

Roche is funding the Valcyte study. My pragmatic brain tells me to be

glad for the money spent on cfs even if the results are minimal or

negative. My best quess is that Valcyte will reduce viral infection

in SOME patients to where their immune system can recover and take

over control of the other infections. I hope I am right on this.

a Carnes

>

> a, I missed adding that Montoya works at Stanford, very much

> traditional non-believers in CFS, and valcyte is big pharma, don't

> know how much they're paying him. His results in those with chronic

> fatigue or CFS/ME are also extremely new, preliminary, and have a

long

> ways to go to see if they'll stick.

>

>

>

> I highly doubt it given so many things like the ampligen failure

which

> touted, and indeed had similar early results, happened, but now it's

> fairly clear those were " head-fakes " and not a surprise that they

> failed or at least taught many of us that the root cause of CFS was

> not really being addressed. I hope for the best for those being

> treated by him, but it doesn't look good, IMO.

>

>

>

>

>

[Guest guest]

Hi, a.

<pj7@...> wrote:

>

> , I will try to make one point clear and simple. The so-called

> brain damage in cfs is not permanent damage in the cases I have seen.

***I actually agree with you on this otherwise why bother with any

treatments. To make my initial post more clear here, I don't agree

with the assumption the medical profession is making with " chemo

brain " cancer patients that their damage is permanent, which makes it

seem their being lazy minded or worse, avoiding accountability for

coming up with a solution to those that are already damaged and the

financial cost that would entail.

> I am not debating whether antibiotics or Valcyte or Ampligen will

> CURE cfs. My point is that when a patient recovers at all, to some

> level, the first thing that improves is brain function. That is what

> Montoya is saying. That is what I have seen personally and in other

> patients who recovered to some level.

***I understand. The same thing is happening in some PWCs on Rich's

simplified treatment as has happened early on in many past yet

ultimately unsuccessful treatments where the brain symptoms later came

back. I'm really emphasizing long term benefit like you apparently

have had with antibiotics while others of us have not, so I think

we're not so much disagreeing as much as focusing on different issues

which are all valid.

>

> Let me just add a couple of examples. My son become suddenly ill at

> age 30 with severe brain symptoms. His MRI showed areas of his brain

> that were damaged even though he only had symptoms for about two

> weeks before diagnosis and treatment. (My MRI does not show any

> damage.) Within about one month of starting an antibiotic for

> borrelia he was back to work and is currently, 3 years later

> traveling all over China doing business.

>

> I know of patients with Alzheimers who got on antibiotics for

> pneumonia. Within a day or two their brain function improved. Please,

> I am not suggesting that a simple course of antibiotics will cure AD

> or cfs or Lyme.

***Alright.

I am saying that brain damage may not be permanent,

> and that it clears rather quickly in a lot of cases.

***From the cases you've seen, in how many or what percentage does

this result stick? Do you know?

>

> I understand that some people must take Klonopin to survive. It is

> not a cure, it does not fix the problem, if the problem is

> inflammation due to several chronic infections.

***Agreed.

My personal

> experience is that I will tolerate the symptoms for a LONG time

> before I will take something paleative which can have worse effects

> than the disease.

***I agree compensatory treatments are not the goal and should not be

the focus in treatment.

>

> Roche is funding the Valcyte study. My pragmatic brain tells me to be

> glad for the money spent on cfs even if the results are minimal or

> negative. My best quess is that Valcyte will reduce viral infection

> in SOME patients to where their immune system can recover and take

> over control of the other infections. I hope I am right on this.

***I agree and hope you are right too. I like that valcyte has a

" prodrug " profile and isn't so simply a rehash of gancyclovir which

failed in the past in CFS treatment, maybe that's why it's working in

some for the moment.

***http://en.wikipedia.org/wiki/Valcyte

>

> a Carnes

***

[Guest guest]

Dear friends, as you mentioned that Roche is behind and funding the Montoya

trial of Valcyte, do you also know who is behind the resurrected Nexavir

ex-Kutapressin?

It is wrong that some families very happy for the results funded the company,

infact I believe it's a group of doctors, some might be well known here among

CFS patients, and it's no surprise. I am not saying any name, but it's easy to

discover, just do a little bit of research. :-)

To me personally, each time I see a known name in the CFS world behind a

medicine I became really reluctant and suspicious toward the same medicine and

toward the prescription of these doctors...

But this could just be a problem of mine...

Cheers,

Massimo

Re: Rich & All: " Chemo Brain " injury in cancer

same as CFIDS

, I will try to make one point clear and simple. The so-called

brain damage in cfs is not permanent damage in the cases I have seen.

I am not debating whether antibiotics or Valcyte or Ampligen will

CURE cfs. My point is that when a patient recovers at all, to some

level, the first thing that improves is brain function. That is what

Montoya is saying. That is what I have seen personally and in other

patients who recovered to some level.

Let me just add a couple of examples. My son become suddenly ill at

age 30 with severe brain symptoms. His MRI showed areas of his brain

that were damaged even though he only had symptoms for about two

weeks before diagnosis and treatment. (My MRI does not show any

damage.) Within about one month of starting an antibiotic for

borrelia he was back to work and is currently, 3 years later

traveling all over China doing business.

I know of patients with Alzheimers who got on antibiotics for

pneumonia. Within a day or two their brain function improved. Please,

I am not suggesting that a simple course of antibiotics will cure AD

or cfs or Lyme. I am saying that brain damage may not be permanent,

and that it clears rather quickly in a lot of cases.

I understand that some people must take Klonopin to survive. It is

not a cure, it does not fix the problem, if the problem is

inflammation due to several chronic infections. My personal

experience is that I will tolerate the symptoms for a LONG time

before I will take something paleative which can have worse effects

than the disease.

Roche is funding the Valcyte study. My pragmatic brain tells me to be

glad for the money spent on cfs even if the results are minimal or

negative. My best quess is that Valcyte will reduce viral infection

in SOME patients to where their immune system can recover and take

over control of the other infections. I hope I am right on this.

a Carnes

>

> a, I missed adding that Montoya works at Stanford, very much

> traditional non-believers in CFS, and valcyte is big pharma, don't

> know how much they're paying him. His results in those with chronic

> fatigue or CFS/ME are also extremely new, preliminary, and have a

long

> ways to go to see if they'll stick.

>

>

>

> I highly doubt it given so many things like the ampligen failure

which

> touted, and indeed had similar early results, happened, but now it's

> fairly clear those were " head-fakes " and not a surprise that they

> failed or at least taught many of us that the root cause of CFS was

> not really being addressed. I hope for the best for those being

> treated by him, but it doesn't look good, IMO.

>

>

>

>

>

[Guest guest]

a wrote:

> I am saying that brain damage may not be permanent,

> > and that it clears rather quickly in a lot of cases.

>

>

wrote:

> ***From the cases you've seen, in how many or what percentage does

> this result stick? Do you know?

a replies:

Ah, , that is the sticking point. I don't think anyone knows how

many stay well and don't relapse. I have certainly relapsed at times,

and I fear for my son. You get well and then wait for the other shoe

to drop, and some of us are " thousand leggers " - they are worse bugs

than centipedes in case you have not heard of them.

[Guest guest]

Massimo,

I think you know the Bible verse where wrote that some preached

the gospel to make money, but, in any case, the gospel was still

preached - and that is a key principle - the motive is their problem.

So if Roche or a group of doctors are in it for the money, I don't

blame them as long as it furthers finding the causes and the

effective treatment for cfs.

I did biotech research for an investment company for three years.

During that time I saw a lot that was disgusting and disillusioning,

but we have to work with what we have got and still try to keep our

own behavior honest and decent. (I could tell you a funny story about

Roche, but I won't waste time here.)

a Carnes

> Dear friends, as you mentioned that Roche is behind and funding the

Montoya trial of Valcyte, do you also know who is behind the

resurrected Nexavir ex-Kutapressin?

>

> It is wrong that some families very happy for the results funded

the company, infact I believe it's a group of doctors, some might be

well known here among CFS patients, and it's no surprise. I am not

saying any name, but it's easy to discover, just do a little bit of

research. :-)

>

> To me personally, each time I see a known name in the CFS world

behind a medicine I became really reluctant and suspicious toward the

same medicine and toward the prescription of these doctors...

>

> But this could just be a problem of mine...

>

> Cheers,

>

> Massimo

[Guest guest]

If you look at the papers on and peoples experiences with 'chemo brain'

there are a wide range of experiences - some people's neuro issues resolve

after a year or two, others remain with them for a long long time.

I think that there are a lot of factors that are still not at all

understood. Also, and I think this is crucial, one person's life and job may

be much more demanding than someone else's.

Some people, such as most professionals, who are particularly high

functioning pre-injury may be devastated by having a dramatic decrease in

their working memory and executive function, to others, such as the retired

or part time workers, or people who are independently wealthy, it may not be

such an issue.

It depends on how much your job and personal life depends on those cognitive

skills.

[Guest guest]

It doesn't really matter if the results stick or not. At least not

whether people get sick again or not, because they don't even know

really what the drug is doing. What virus it's attacking, etc. It

even says on http://vicd.info/clinicaltrial.html that " The resulting

data from the trial will help to elucidate the possible role of EBV,

HHV-6 (or a yet to be known virus) and/or an altered immune system as

possible triggers for CFS. " See the 'yet to be known' part? They

don't know.

The point is that it's doing something very dramatic and reproducable.

http://clinicaltrials.gov/ct/show/NCT00478465?order=3 Look at this-

" The total number of patients treated today is 30, 26 had " elevated

titers " and 4 had " low titers " . Of the 26 patients with " elevated

titers " , 25 have had a dramatic recovery. Of the 4 patients with " low

titers " , none have responded. " That's 25 out of 26 people who have

dramatically improved, and one of them had to quit taking the drug

early. Not to mention the ever growing number of people taking

Valcyte around the country, and the world. The news is going to get

out.

" Whether we put serious money behind this will all depend on the

outcome of this next study, " said Dr. Nigel Pluck, Roche's clinical

science leader for Valcyte. " This is a somewhat contentious area for

the medical profession in that CFS is not a disease that you can test

for. It's a diagnosis that you come to by excluding everything else. "

http://www.iht.com/articles/2007/01/15/business/fatigue.php

The wait is almost over IMO. It's not the same as Ampligen or any

other trial. Ampligen and Valcyte are totally different drugs with

totally different pathologies. As well, did any other trials seperate

gradual and sudden onsets? This is going to prove once and for all

that CFS is a real disease. Wessely, his gang, everyone who ever

disparaged CFS is going to have the biggest pile of crap on a plate

right in front of them. Their whole life's work totally screwed.

Think about it. If Roche sells 1,000 treatments of Valcyte at $15,000

a pop, that's $15 million dollars. If it sold 10,000, that's $150

million. If 100,000, that's $1.5 billion for a drug they've got

sitting on their shelves. They're not going to ignore that amount of

money. Plus, working at Stanford is only going to increase his

credibility. People on the immunesupport.com board have said that a

lot of people who he works with don't want him to succeed, because it

would mean they were wrong all this time. The first trial was the

earthquake way out at sea, the second trial will result in the

tsunami we've all been waiting for.

>

> a, I missed adding that Montoya works at Stanford, very much

> traditional non-believers in CFS, and valcyte is big pharma, don't

> know how much they're paying him. His results in those with chronic

> fatigue or CFS/ME are also extremely new, preliminary, and have a

long

> ways to go to see if they'll stick.

>

>

>

> I highly doubt it given so many things like the ampligen failure

which

> touted, and indeed had similar early results, happened, but now it's

> fairly clear those were " head-fakes " and not a surprise that they

> failed or at least taught many of us that the root cause of CFS was

> not really being addressed. I hope for the best for those being

> treated by him, but it doesn't look good, IMO.

>

>

>

>

>

[Guest guest]

a,

I know very well that part of the Gospel, though they preached the Gospel. Now,

the problem (not Montoya's rather than Nexavir) is that what they preach is not

the Gospel, but in some cases they are simply false illusions given to people

who would do anything to reconquer the lost health.

My simple opinion.

I have seen a professor, a speaker at so many CFS/ME conferences around the

world, turning to one medicine suddenly knowing that this medicine will never

ure CFS... but he is prescribing it now to all his patients. Is that good?

I think he will lose credibility doing so.

Massimo

Re: Rich & All: " Chemo Brain " injury in cancer

same as CFIDS

Massimo,

I think you know the Bible verse where wrote that some preached

the gospel to make money, but, in any case, the gospel was still

preached - and that is a key principle - the motive is their problem.

So if Roche or a group of doctors are in it for the money, I don't

blame them as long as it furthers finding the causes and the

effective treatment for cfs.

I did biotech research for an investment company for three years.

During that time I saw a lot that was disgusting and disillusioning,

but we have to work with what we have got and still try to keep our

own behavior honest and decent. (I could tell you a funny story about

Roche, but I won't waste time here.)

a Carnes

> Dear friends, as you mentioned that Roche is behind and funding the

Montoya trial of Valcyte, do you also know who is behind the

resurrected Nexavir ex-Kutapressin?

>

> It is wrong that some families very happy for the results funded

the company, infact I believe it's a group of doctors, some might be

well known here among CFS patients, and it's no surprise. I am not

saying any name, but it's easy to discover, just do a little bit of

research. :-)

>

> To me personally, each time I see a known name in the CFS world

behind a medicine I became really reluctant and suspicious toward the

same medicine and toward the prescription of these doctors...

>

> But this could just be a problem of mine...

>

> Cheers,

>

> Massimo

[Guest guest]

Well, J.

My point is really be cautious in your optimism about valcyte. It is

very much the same as ampligen, gancyclovir, famvir, valtrex and other

antivirals that have failed in CFS over the years(talk to the

HHV-Foundation for their list of over 70 antiviral compounds they've

looked at for CFIDS and their success rate in actual PWCs, it's not

good at all). Also, some blood test results are often maliable by

many different treatments, alternative and pharma made, so be careful

about reading too much into those reports and what you think they mean.

Projection, false hope and denial are powerful aspects of our

existence as people, especially when under stress, and unfortunately,

results " sticking " is the holy grail in CFS treatment. It definitely

matters and if it so happens that valcyte does this then good.

I'm just saying with good reason, CFS treatment history with similar

agents, that valcyte doesn't look very promising. As you indicate,

the researchers have no real working hypothesis for what CFS is nor

what the drug is actually doing in PWCs, another bad sign.

I'd be happy to be wrong about this, it would be nice to see droves of

PWCs getting truly well soon.

<mascis_j@...> wrote:

>

> It doesn't really matter if the results stick or not. At least not

> whether people get sick again or not, because they don't even know

> really what the drug is doing. What virus it's attacking, etc. It

> even says on http://vicd.info/clinicaltrial.html that " The resulting

> data from the trial will help to elucidate the possible role of EBV,

> HHV-6 (or a yet to be known virus) and/or an altered immune system as

> possible triggers for CFS. " See the 'yet to be known' part? They

> don't know.

>

> The point is that it's doing something very dramatic and reproducable.

> http://clinicaltrials.gov/ct/show/NCT00478465?order=3 Look at this-

> " The total number of patients treated today is 30, 26 had " elevated

> titers " and 4 had " low titers " . Of the 26 patients with " elevated

> titers " , 25 have had a dramatic recovery. Of the 4 patients with " low

> titers " , none have responded. " That's 25 out of 26 people who have

> dramatically improved, and one of them had to quit taking the drug

> early. Not to mention the ever growing number of people taking

> Valcyte around the country, and the world. The news is going to get

> out.

>

> " Whether we put serious money behind this will all depend on the

> outcome of this next study, " said Dr. Nigel Pluck, Roche's clinical

> science leader for Valcyte. " This is a somewhat contentious area for

> the medical profession in that CFS is not a disease that you can test

> for. It's a diagnosis that you come to by excluding everything else. "

> http://www.iht.com/articles/2007/01/15/business/fatigue.php

>

> The wait is almost over IMO. It's not the same as Ampligen or any

> other trial. Ampligen and Valcyte are totally different drugs with

> totally different pathologies. As well, did any other trials seperate

> gradual and sudden onsets? This is going to prove once and for all

> that CFS is a real disease. Wessely, his gang, everyone who ever

> disparaged CFS is going to have the biggest pile of crap on a plate

> right in front of them. Their whole life's work totally screwed.

> Think about it. If Roche sells 1,000 treatments of Valcyte at $15,000

> a pop, that's $15 million dollars. If it sold 10,000, that's $150

> million. If 100,000, that's $1.5 billion for a drug they've got

> sitting on their shelves. They're not going to ignore that amount of

> money. Plus, working at Stanford is only going to increase his

> credibility. People on the immunesupport.com board have said that a

> lot of people who he works with don't want him to succeed, because it

> would mean they were wrong all this time. The first trial was the

> earthquake way out at sea, the second trial will result in the

> tsunami we've all been waiting for.

>

>

[Guest guest]

It's only similar if you're talking in terms of drugs that have been

used in CFS trials. I'm talking in terms of effectiveness and mode of

operation. Ampligen is an immune booster, no real relation there.

Ganciclovir is very similar, but does not the exact same effect,

since " At 60%, its(Valcyte's) bioavailability is up to 10-fold higher

than that of oral ganciclovir. "

http://www.medscape.com/viewarticle/471920 . So ganciclovir isn't an

exact comparison. Plus, it says in the Montoya study paper that

Valcyte is the only known oral antiviral with efficacy against both

HHV-6 and EBV. None of the other antivirals tested had this quality.

And sticking is kind of susceptible to interpretation. Regarding

Valcyte, the results already HAVE stuck. The people treated got

better. Whether they relapsed or not isn't really the point. The

point is they were cured(if only tempararily) by an antiviral

medication for a duration of years, which is pretty effective

evidence against placebo effect.

So yes, false hope and denial are big problems, but so is defeatism.

I get exited just as much as the next guy when I hear about something

in CFS, but after more investigation, it usually subsides. This

doesn't seem to have the holes associated with it that other

treatments do.

And I would argue that it's not a bad sign that they admit ignorance.

Much better that than to come up with half-baked theories that don't

hold up to questioning as many others have done. It's not a question

of having all the answers, it's a question of proving once and for

all that CFS is a real disease with irrefutable evidence backing it

up, then the real research can begin. Plus, they don't really need a

hypothesis for what CFS is, there is plenty of that. The most common

and widely accepted being a chronic immune activation due to long

term viral or bacterial infection. The problem with this is no one

has identified the virus or bacteria responsible, much less how to

treat the supposed virus or bacteria. This study will show that it

can be treated, therefore it must be there to begin with.

> >

> > It doesn't really matter if the results stick or not. At least

not

> > whether people get sick again or not, because they don't even

know

> > really what the drug is doing. What virus it's attacking, etc. It

> > even says on http://vicd.info/clinicaltrial.html that " The

resulting

> > data from the trial will help to elucidate the possible role of

EBV,

> > HHV-6 (or a yet to be known virus) and/or an altered immune

system as

> > possible triggers for CFS. " See the 'yet to be known' part? They

> > don't know.

> >

> > The point is that it's doing something very dramatic and

reproducable.

> > http://clinicaltrials.gov/ct/show/NCT00478465?order=3 Look at

this-

> > " The total number of patients treated today is 30, 26

had " elevated

> > titers " and 4 had " low titers " . Of the 26 patients with " elevated

> > titers " , 25 have had a dramatic recovery. Of the 4 patients

with " low

> > titers " , none have responded. " That's 25 out of 26 people who

have

> > dramatically improved, and one of them had to quit taking the

drug

> > early. Not to mention the ever growing number of people taking

> > Valcyte around the country, and the world. The news is going to

get

> > out.

> >

> > " Whether we put serious money behind this will all depend on the

> > outcome of this next study, " said Dr. Nigel Pluck, Roche's

clinical

> > science leader for Valcyte. " This is a somewhat contentious area

for

> > the medical profession in that CFS is not a disease that you can

test

> > for. It's a diagnosis that you come to by excluding everything

else. "

> > http://www.iht.com/articles/2007/01/15/business/fatigue.php

> >

> > The wait is almost over IMO. It's not the same as Ampligen or any

> > other trial. Ampligen and Valcyte are totally different drugs

with

> > totally different pathologies. As well, did any other trials

seperate

> > gradual and sudden onsets? This is going to prove once and for

all

> > that CFS is a real disease. Wessely, his gang, everyone who ever

> > disparaged CFS is going to have the biggest pile of crap on a

plate

> > right in front of them. Their whole life's work totally screwed.

> > Think about it. If Roche sells 1,000 treatments of Valcyte at

$15,000

> > a pop, that's $15 million dollars. If it sold 10,000, that's $150

> > million. If 100,000, that's $1.5 billion for a drug they've got

> > sitting on their shelves. They're not going to ignore that amount

of

> > money. Plus, working at Stanford is only going to increase his

> > credibility. People on the immunesupport.com board have said that

a

> > lot of people who he works with don't want him to succeed,

because it

> > would mean they were wrong all this time. The first trial was the

> > earthquake way out at sea, the second trial will result in the

> > tsunami we've all been waiting for.

> >

> >

>

[Guest guest]

I agree Massimo. Anytime a Dr. gains benefit from a medicine or supplement they

recommend it causes me to take a second look.

Diane in MI

Re: Rich & All: " Chemo Brain " injury in cancer

same as CFIDS

, I will try to make one point clear and simple. The so-called

brain damage in cfs is not permanent damage in the cases I have seen.

I am not debating whether antibiotics or Valcyte or Ampligen will

CURE cfs. My point is that when a patient recovers at all, to some

level, the first thing that improves is brain function. That is what

Montoya is saying. That is what I have seen personally and in other

patients who recovered to some level.

Let me just add a couple of examples. My son become suddenly ill at

age 30 with severe brain symptoms. His MRI showed areas of his brain

that were damaged even though he only had symptoms for about two

weeks before diagnosis and treatment. (My MRI does not show any

damage.) Within about one month of starting an antibiotic for

borrelia he was back to work and is currently, 3 years later

traveling all over China doing business.

I know of patients with Alzheimers who got on antibiotics for

pneumonia. Within a day or two their brain function improved. Please,

I am not suggesting that a simple course of antibiotics will cure AD

or cfs or Lyme. I am saying that brain damage may not be permanent,

and that it clears rather quickly in a lot of cases.

I understand that some people must take Klonopin to survive. It is

not a cure, it does not fix the problem, if the problem is

inflammation due to several chronic infections. My personal

experience is that I will tolerate the symptoms for a LONG time

before I will take something paleative which can have worse effects

than the disease.

Roche is funding the Valcyte study. My pragmatic brain tells me to be

glad for the money spent on cfs even if the results are minimal or

negative. My best quess is that Valcyte will reduce viral infection

in SOME patients to where their immune system can recover and take

over control of the other infections. I hope I am right on this.

a Carnes

>

> a, I missed adding that Montoya works at Stanford, very much

> traditional non-believers in CFS, and valcyte is big pharma, don't

> know how much they're paying him. His results in those with chronic

> fatigue or CFS/ME are also extremely new, preliminary, and have a

long

> ways to go to see if they'll stick.

>

>

>

> I highly doubt it given so many things like the ampligen failure

which

> touted, and indeed had similar early results, happened, but now it's

> fairly clear those were " head-fakes " and not a surprise that they

> failed or at least taught many of us that the root cause of CFS was

> not really being addressed. I hope for the best for those being

> treated by him, but it doesn't look good, IMO.

>

>

>

>

>