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

[Guest guest]

Cort-interesting. Cognitively I am good, still working. However,

the muscles that control my speech give out. By Friday, I am only

good for talking about 2 hours, after that I sound like I am drunk,

although I can write emails and do research.

I have thought at times that I might have something similar to

Lou Gehrigs disease, just not nearly as bad.

Mike C

>

> 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

[Guest guest]

It wld be really nice to know what happened to the original cohort of

Valcyte users. Did they continue to improve, go back to work, relapse?

One person on Immunesupport.com said that 2 ppl who initially improved

subsequently relapsed... anohter person said one of the patients went

back to work...

Unsubstantiated, unsourced Internet chatter. But surely someone has to

be tracking these ppl?

And what about the patients of Lerner in Detroit, or Brewer in Kansas

City, who have been treated with Valcyte... what were their long-term

outcomes.

I dont' think I've ever run across a Lerner patient online, and only

one Brewer patient....

It's frustrating.

L.

[Guest guest]

I know what you mean. One very interesting thing is from what I've

heard, which is the same as you, is that Dr. Montoya said that the

people who relapsed(like you, I've heard it's only a couple) did so

after getting the flu, so it was important for the people who were on

Valcyte to stay away from sick people. Thing is, the sudden-onsets

got sick after an initial 'flu like illness'. I don't know if they've

put two and two together, but it is definately interesting.

>

> It wld be really nice to know what happened to the original cohort

of

> Valcyte users. Did they continue to improve, go back to work,

relapse?

>

> One person on Immunesupport.com said that 2 ppl who initially

improved

> subsequently relapsed... anohter person said one of the patients

went

> back to work...

>

> Unsubstantiated, unsourced Internet chatter. But surely someone has

to

> be tracking these ppl?

>

> And what about the patients of Lerner in Detroit, or Brewer in

Kansas

> City, who have been treated with Valcyte... what were their long-

term

> outcomes.

>

> I dont' think I've ever run across a Lerner patient online, and

only

> one Brewer patient....

>

> It's frustrating.

>

> L.

>

[Guest guest]

Do they know exactly what it is that makes chemo patient' brains look like CFS?

Could it be the destruction of the immune system, perhaps even setting into play

the HPA event cascade that sets them up for the multiple infections many w/ cfs

have.

Diane in MI

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

cancer same as CFIDS

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]

Hi, J.

mascis_j@...> wrote:

>

> 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.

***Its " effectiveness " has not been proven at all, it really hasn't.

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.

***Is the HHV6-Foundation so impressed by this statement? They normally

announce a

good finding for CFIDS even if it hasn't been proven yet completely, what do

they say? It's

a valid concern and doesn't bode well if they haven't, IMO.

None of the other antivirals tested had this quality.

***No, early on some of them did. But they ultimately failed.

> 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.

***If a benefit is temporary, that's NOT cure. No way. And this has been the

history of

many treatments for CFIDS; Early benefit>relapse>resume treatment>treatment

doesn't

have same benefit again>side effects>benefits fizzle. If they those that saw

benefit on

valcyte are already relapsing, that's also is not a good sign.

>

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

***I'm the last to be defeatist, but along side optimism I have a lot of

experience with CFS

and researching it too.

> 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.

***I hope you're right. But I see holes, at least one big one too.

>

> 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.

***No one front and center in researching this illness is clinging to purely

psyhcogenic

theories anymore. Wesselly has capitulated, he quit CFS, and he was the

biggest

proponent of the psychogenics and CBT/GET treatments for CFS.

Plus, they don't really need a

> hypothesis for what CFS is, there is plenty of that.

***It would be helpful, it would tell us they're more serious about helping us.

Their

emphasis is first drug centered, not PWC success centered. Their stakes are

with valcyte

and they'll very likely move on from CFS and PWCs if it doesn't fair well in

treating us over

the long haul.

The most common

> and widely accepted being a chronic immune activation due to long

> term viral or bacterial infection.

***You missed toxins, environmental toxins, like biotoxins, metals, heavy

metals, and

other chemical toxins.

The problem with this is no one

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

> treat the supposed virus or bacteria.

***They're likely mutliple infections in each person. Treating any single

identified one

has rarely if ever been a successful treatment strategy in CFS.

This study will show that it

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

***CFS can certainly be treated by many methods with mostly modest success, but

true

effectiveness and cure do require the " does it stick? " factor to be answered

" yes " . It's a tall

order when talking CFS, but that's my point.

***

>

>

<david-

> hall@> wrote:

> >

> > 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).

[Guest guest]

Unclear reporting and confusing stories don't bode well for any treatment once

thought to

be effective early on....Successes tend to keep crisp clear records of results

and make

them public and often, leaving little room for doubt.

<lmonrovia@...> wrote:

>

> It wld be really nice to know what happened to the original cohort of

> Valcyte users. Did they continue to improve, go back to work, relapse?

>

> One person on Immunesupport.com said that 2 ppl who initially improved

> subsequently relapsed... anohter person said one of the patients went

> back to work...

>

> Unsubstantiated, unsourced Internet chatter. But surely someone has to

> be tracking these ppl?

>

> And what about the patients of Lerner in Detroit, or Brewer in Kansas

> City, who have been treated with Valcyte... what were their long-term

> outcomes.

>

> I dont' think I've ever run across a Lerner patient online, and only

> one Brewer patient....

>

> It's frustrating.

>

> L.

>

[Guest guest]

Hi, Diane.

<dphf@...> wrote:

>

> Do they know exactly what it is that makes chemo patient' brains look like

CFS? Could it

be the destruction of the immune system, perhaps even setting into play the HPA

event

cascade that sets them up for the multiple infections many w/ cfs have.

>

> Diane in MI

***It really is by looking at brain scans and studies discussing brain function,

then

comparing the two groups. Brain scans have confirmed dysfunction of the

structure

called the basal ganglia in cancer patients with " chemo brain " symptoms some

time after

their chemo treatments had stopped.

***Chemo is a toxin and thought to increase destructive oxidative stress that

can produce

such brain injury in people while in CFS oxidative stress is often increased as

well as

thought to be produced, at least in part, by toxicity as well as infections.

And in CFS, we

know from studies posted at co-cure.org research section that basal ganglia

dysfunction

is postulated by some to be the epicenter of key symptoms for this disease(eg,

the

connection to " chemo brain " ).

***

[Guest guest]

>>>so it was important for the people who were on Valcyte to stay away from sick

people.<<<<

What's this about? Are you/he saying being on Valcyte itself makes them more at

risk, or that this group simply is more at risk anyway?

Does Valcyte fight specific viruses, but make people more susceptible to other

ones? I have wondered this about some antiviral treatment, and some immune

treatments.

(Other than stimulating ones, for instance. Even an acupuncture treatment to

" stimulate " the immune system makes me sick with flu-like symptoms/sore throat)

Thanks,

Katrina

> >

> > It wld be really nice to know what happened to the original cohort

> of

> > Valcyte users. Did they continue to improve, go back to work,

> relapse?

> >

> > One person on Immunesupport.com said that 2 ppl who initially

> improved

> > subsequently relapsed... anohter person said one of the patients

> went

> > back to work...

> >

> > Unsubstantiated, unsourced Internet chatter. But surely someone has

> to

> > be tracking these ppl?

> >

> > And what about the patients of Lerner in Detroit, or Brewer in

> Kansas

> > City, who have been treated with Valcyte... what were their long-

> term

> > outcomes.

> >

> > I dont' think I've ever run across a Lerner patient online, and

> only

> > one Brewer patient....

> >

> > It's frustrating.

> >

> > L.

> >

>

[Guest guest]

First, this is all heresay and gossip, and I'm no expert. What I have

heard is that the people who relapsed, and I have no idea how much

they relapsed, what their status is/was, etc. is that they got sick

and relapsed. Then took more Valcyte and got better again. Hence

the 'stay away from sick people'. Like I say, this is not straight

from the horses mouth, and could be the result of the telephone game,

where everyone who repeats it gets it a little more wrong. What I was

saying is that the relapse could have nothing to do with regular flu

at all. The sudden onsets got sick from a 'flu-like' illness to begin

with, so I don't know if anyone has put two and two together that it

might not be a normal illness, but rather another sudden onset. You

can ask about it on the immunesupport.com board, there are a couple

people who are going to be in the second study, and said they were

going to start within a week or so, one person mentioned the 25th or

26th of June.

> > >

> > > It wld be really nice to know what happened to the original

cohort

> > of

> > > Valcyte users. Did they continue to improve, go back to work,

> > relapse?

> > >

> > > One person on Immunesupport.com said that 2 ppl who initially

> > improved

> > > subsequently relapsed... anohter person said one of the

patients

> > went

> > > back to work...

> > >

> > > Unsubstantiated, unsourced Internet chatter. But surely someone

has

> > to

> > > be tracking these ppl?

> > >

> > > And what about the patients of Lerner in Detroit, or Brewer in

> > Kansas

> > > City, who have been treated with Valcyte... what were their

long-

> > term

> > > outcomes.

> > >

> > > I dont' think I've ever run across a Lerner patient online, and

> > only

> > > one Brewer patient....

> > >

> > > It's frustrating.

> > >

> > > L.

> > >

> >

>

[Guest guest]

OK, Thanks. I've actually learned that I know someone in the trial, and another

who has seen Dr. Montoya. Maybe I'll get the scoop.

The second person developed CFS from Interferon, for Hep C, just as the article

described recently.

If I understand correctly, and FWIW, Dr. Montoya has never been a CFS doctor,

but kind of stumbled on this subset and Valcyte response, and thus, the formal

studies.

I was also told by an HIV patient in So. Calif. that he is a very big honcho in

infectious diseases. That, and Stanford may play into why he gets to be funded,

as opposed to to our other Scientists who repeatedly get turned down. Even so,

since the early days, even top Cancer and AIDS Researchers, and at large

Universities, got turned down for CFS funding. So, something is different with

him, it seems, in status or connections. In addition to it being a large

Pharamaceutical Co. that would benefit.

Random tidbits,

Katrina

> > > >

> > > > It wld be really nice to know what happened to the original

> cohort

> > > of

> > > > Valcyte users. Did they continue to improve, go back to work,

> > > relapse?

> > > >

> > > > One person on Immunesupport.com said that 2 ppl who initially

> > > improved

> > > > subsequently relapsed... anohter person said one of the

> patients

> > > went

> > > > back to work...

> > > >

> > > > Unsubstantiated, unsourced Internet chatter. But surely someone

> has

> > > to

> > > > be tracking these ppl?

> > > >

> > > > And what about the patients of Lerner in Detroit, or Brewer in

> > > Kansas

> > > > City, who have been treated with Valcyte... what were their

> long-

> > > term

> > > > outcomes.

> > > >

> > > > I dont' think I've ever run across a Lerner patient online, and

> > > only

> > > > one Brewer patient....

> > > >

> > > > It's frustrating.

> > > >

> > > > L.

> > > >

> > >

> >

>

[Guest guest]

>>>> And in CFS, we know from studies posted at co-cure.org research section

that basal ganglia

dysfunction is postulated by some to be the epicenter of key symptoms for this

disease(eg,

the connection to " chemo brain " ).<<<<

I'm wondering, in light of this, why, when inquiring, I have not found more

ME/CFS patients with significant Movement Disorders. Although it is interesting

that the International? Organization (WE MOVE) is listed on the Nightingale ME

website.

It was only awhile back, years into ME/CFS and Movement Disorders that someone

pointed out to me a CFS/Basal Ganglia connection...I could not beleive I'd

missed that.

THere was a GWS study showing BG damage, which they said was a concern due to

future risk of Movement Disorders such as Parkinson's.

There are different parts/pathways? in BG operating cognitive type function from

the movement ones, and this is a newer discovery in Science, since it had

prviously only been connected to Movement.

I reported for years that I experience a connection between my cognitive and

movement difficulties, which was thoroughly debunked by more than one World

renowned Neurologist.

It was a new local one a couple of years ago who told me yes, definitely this

could be " and they know it " .

I only re-inquired because I had seen on a cover story in Newsweek or Time about

teenagers, showing part of the BG involved in their learning/cognitive

development.

There it was, illustrated in Living Color!

Even when we get to non-CFS " Experts " that turn out to be such a nightmare, it

can turn out to be their own ignorance, even deception, rather than the

patients' idiocy or neurosis, as they imply. This is a hard, hard lesson, but

one which could save a great deal of heartache, damage, and wasted time we could

use with the right tools and management.

Just to make it more interesting, one of my Lactate spikes on my MRS brain scan

in Asheville is near the Basal Ganglia. I'd sure like to communicate with others

who've had the MRS.

Ill have to review those studies on CoCure!

Katrina

> >

> > Do they know exactly what it is that makes chemo patient' brains look like

CFS? Could it

> be the destruction of the immune system, perhaps even setting into play the

HPA event

> cascade that sets them up for the multiple infections many w/ cfs have.

> >

> > Diane in MI

>

>

> ***It really is by looking at brain scans and studies discussing brain

function, then

> comparing the two groups. Brain scans have confirmed dysfunction of the

structure

> called the basal ganglia in cancer patients with " chemo brain " symptoms some

time after

> their chemo treatments had stopped.

>

>

>

> ***Chemo is a toxin and thought to increase destructive oxidative stress that

can produce

> such brain injury in people while in CFS oxidative stress is often increased

as well as

> thought to be produced, at least in part, by toxicity as well as infections.

And in CFS, we

> know from studies posted at co-cure.org research section that basal ganglia

dysfunction

> is postulated by some to be the epicenter of key symptoms for this disease(eg,

the

> connection to " chemo brain " ).

>

>

>

> ***

>

[Guest guest]

Can't make studies public when there is a beginning or ongoing study -

it's against the rules.

a

>

> Unclear reporting and confusing stories don't bode well for any

treatment once thought to

> be effective early on....Successes tend to keep crisp clear records

of results and make

> them public and often, leaving little room for doubt.

>

>

> <lmonrovia@> wrote:

> >

> > It wld be really nice to know what happened to the original

cohort of

> > Valcyte users. Did they continue to improve, go back to work,

relapse?

> >

> > One person on Immunesupport.com said that 2 ppl who initially

improved

> > subsequently relapsed... anohter person said one of the patients

went

> > back to work...

> >

> > Unsubstantiated, unsourced Internet chatter. But surely someone

has to

> > be tracking these ppl?

> >

> > And what about the patients of Lerner in Detroit, or Brewer in

Kansas

> > City, who have been treated with Valcyte... what were their long-

term

> > outcomes.

> >

> > I dont' think I've ever run across a Lerner patient online, and

only

> > one Brewer patient....

> >

> > It's frustrating.

> >

> > L.

> >

>

[Guest guest]

Who said I'm talking about studies?...There are other ways drug cos

get a positive message out before their investments are science

publication ready, it's part of their development phase marketing

engine to boost drug name recognition and brand value.

<pj7@...> wrote:

>

> Can't make studies public when there is a beginning or ongoing study -

> it's against the rules.

>

> a

>

>

> >

> > Unclear reporting and confusing stories don't bode well for any

> treatment once thought to

> > be effective early on....Successes tend to keep crisp clear records

> of results and make

> > them public and often, leaving little room for doubt.

> >

> >

> > <lmonrovia@> wrote:

> > >

> > > It wld be really nice to know what happened to the original

> cohort of

> > > Valcyte users. Did they continue to improve, go back to work,

> relapse?

> > >

> > > One person on Immunesupport.com said that 2 ppl who initially

> improved

> > > subsequently relapsed... anohter person said one of the patients

> went

> > > back to work...

> > >

> > > Unsubstantiated, unsourced Internet chatter. But surely someone

> has to

> > > be tracking these ppl?

> > >

> > > And what about the patients of Lerner in Detroit, or Brewer in

> Kansas

> > > City, who have been treated with Valcyte... what were their long-

> term

> > > outcomes.

> > >

> > > I dont' think I've ever run across a Lerner patient online, and

> only

> > > one Brewer patient....

> > >

> > > It's frustrating.

> > >

> > > L.

> > >

> >

>

[Guest guest]

" The human brain has a remarkable capacity for plasticity, but does

it have the capacity for repair and/or regeneration? On the basis of

controversial new evidence we speculate that the answer may be `yes',

and suggest that clinicians should therefore approach cognitive

impairment and dementia with a new, cautious optimism. "

http://bjp.rcpsych.org/cgi/content/abstract/190/5/371

>

> , 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, Mark.

It's always nice to see professional agreement for what those of us

with ME/CFS hope and intend towards conquering this illness. I guess

we'll find out how much long low functioning, infected, toxic and

inflammed brain cells can recover or not in ME/CFS.

I think low functioning hints that nuclei-DNA are preserved and

therefore treatment for upgrading mitochondria function, knocking down

infections, eliminating toxins and healing cell membranes aren't a

fools errand. It rationally may work.

<mrl@...> wrote:

>

> " The human brain has a remarkable capacity for plasticity, but does

> it have the capacity for repair and/or regeneration? On the basis of

> controversial new evidence we speculate that the answer may be `yes',

> and suggest that clinicians should therefore approach cognitive

> impairment and dementia with a new, cautious optimism. "

>

> http://bjp.rcpsych.org/cgi/content/abstract/190/5/371

>

[Guest guest]

Hi, Rich.

FWIW, I've thought since your 2004 AACFS poster for CFS pathogenisis

that I'm a ME/CFS gradual onset-sudden onset hybrid. For the most

part before that I clearly felt I was a sudden onset case given the

dramatic downturn in health and energy starting with mono in 1986.

But with the framework of your hypothesis, I could in reflection see

antecendants, symptoms and instances of a CFS pathology lurking below

the surface before it jumped to the foreground with my bout with mono.

It may be tough for many convicted sudden onsetters to recognize their

illness may not be so absolutely sudden without grasping such a

comprehensive view of CFS.

<richvank@...> wrote:

>

> Hi, .

>

> These are good questions, but I don't really know the answers to them!

>

> In a person with sudden-onset CFS, I would say that the brain issues

> that developed after onset of CFS probably did result from the

> methylation cycle block and the associated glutathione depletion, and

> that correcting the latter should ultimately take care of the former.

>

> In your case, it sounds as though the onset was more gradual. In

> that case, it's difficult to say whether your brain-related issues

> all developed from the GD-MCB or not, and that's why I don't know the

> answer to your question.

>

> Concerning people on chemo for cancer, I haven't considered the

> operation of the methylation cycle in that case. I do know that some

> chemo agents interfere with the folate system, so they may indeed

> affect the methylation cycle. I think it's also true that

> glutathione is depleted in people under chemo, so there's another

> item suggesting possible involvement of GD-MCB in this situation.

> However, I am pretty sharply focused on CFS, and haven't looked into

> the cancer situation as much, even though I had it myself nine years

> ago.

>

> Rich

<david-hall@> wrote:

> >

> > 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

> >