Re: Conversation with Dr. Hokama and beta amyloid/chemo therapy?

[Guest guest]

> > > Ok, that is what I needed to hear. Thank you. So Alzheimer's

> > patients for

> > > instance take medications that inhibit production of amyloids

> and

> > the same

> > > could possibly give benefit to CFSers?

> > >

> > >

> > > In a message dated 4/20/2004 1:26:29 PM Eastern Daylight Time,

> > > writes:

> > > I think you have this backwards. What I've heard is that there

> are

> > elevated

> > > beta amyloids in PWC's. Elevated beta amyloids are connected with

> > > Alzheimer's, and it ISN'T something that you would take. It's a

> > fragment of

> > > a protein, often called a misfolded protein, or a type of prion.

> > Everyone is

> > > familiar with Mad Cows Disease, and the associated prions that

> are

> > suspected

> > > of causing it, so now you know what a misfolded protein is and

> > what amyloids

> > > are made out of. There are some differences between Alzheimer's

> and

> > > Creutzfeldt-Jakob disease, (the human form of Mad Cows disease)

> > but there

> > > are some people who suspect they are the same type of disease.

> > Normally the

> > > body produces them, but it also normally cleans them up.

> Amyloids

> > are formed

> > > by fragments of protein that accumulate, and those fragments of

> > proteins are

> > > prions. For some reason there is increased production of

> amyloids

> > in PWC's,

> > > which means the body isn't cleaning them up, or there is

> increased

> > > production of misfolded proteins, or both, which I wouldn't be

> > surprised was

> > > caused by pathogens, and not cleaned up because of reduced

> natural

> > killer

> > > cell function.

> > >

> > > I read that the protein albumin has been found to decrease

> > misfolded

> > > proteins. So that's something to consider eating more of.

> > >

> > >

> > >

[Guest guest]

david

i have thought about the idea of chemotherapy in CFS quite a bit too.

i know that there are current studies going on for MS with a chemo

drug called Campath that reportedly has been used very successfully

in the UK for years.

also, i was reading some articles on these PET scans looking for

amyloid in people with obvious damage. and it seemed like they were

saying that the patients that were negative for amyloid plaques were

suffering from a different form of dementia not caused by amyloid

acculumlation in the brain.

could you explain to me why beta amyloid is being connected to CFS? i

just don't understand the theory.

thanks

bill

> --- In , and all,

>

>

>

> I too had I believe a very similar experience you report with a,

albeit temporary, breakthrough into thinking very clearly and

effortlessly. I'm very dysfunctional in this way-- especially when

doing any kind of efforting. Can't work and have any quality life

like this to say the least.

>

>

>

> Anyway, there is definitely no feeling in the world like that

cleared brain " clog " as has been the best word for me over the years

to characterize it. I thought I had hit the bulleye of what being

over ME/CFS is really like. What happened to me about this happened

on just one day five years ago and five days after some oral surgury

to remove a molar that I needed done. It just so happened towards the

end of my trial on ampligen.

>

>

>

> Although the ampligen had clearly been becoming for me not any kind

of complete solution, it did provide some reduction

> in feeling weak and a bit fluish(ie,some immunomodulation/anti-

inflammatory action happened) as had been chronic with me for years.

Then adding abx and being near the point of completing them post

surgery caused this clear, virtually instantaneous fever then quick

reduction of inflammation I felt in my brain on this one evening like

I'd never felt before.

>

>

>

> I then got so relaxed with a very rare good kind of tired

overtaking me and went to bed. I had a great sleep(never happens with

me) and woke up, then long story short, truly had the most fluid,

effortless great day that I could only then recall I hadn't had since

age eleven. And this happening to me, an ME/CFS patient, who swore

at that time my symptoms/sudden onset started at age 23 with " mono " .

>

>

>

> Anyway, whatever that was I have never been able to reduplicate

using other abx, continued ampligen, prednisone, different anti-

depressants, cortef, moducare, beta glucan, dexamethasone, heparin,

warfarin, isoprenosine and now the Kane " lipid exchange " , etc..

Whatever got momentarily altered for 24hrs or cleared in my brain

leading to the reduction in swelling reorganized itself back to the

status quo brain inflammation that seems at or near the heart of this

disease.

>

>

>

> This talk of the increased beta amyloid/prion-like misfolding in

the brain seems intriguing along the lines of a very possible culprit

or product of a culprit at the crux of this inflammation/brain not

being clear problem. I also know of two patients, directly met one

of them, along my ME/CFS path over the years who came down with

cancer and felt absolutely great during their months of treatments

(minus the temporary nausea espisodes the immediate 2 to 24 hrs

following treatment days.

>

>

>

> After their months of treatment, these two woman unknown by each

other had put their cancer in remission yet all their ME/CFS symptoms

returned full tilt. They felt horrible again, brain fog/clog and the

whole enchelada of symptoms was back. I always thought these examples

said something important about this disease.

>

>

>

> I've thought also maybe most of us should get some kind of chemo

therapy, but not like the cancer patients. A treatment like the

experimental Lupus and MS patients most recently who are successfully

getting cured receiving in just a matter of days of high dose cytoxan

(chemo drug/major anti-inflammatory) to quickly destroy and allow for

the " reboot " of their immune system while carefully preserving their

bone marrow unlike the much more risky radiation/stem cell transplant

versions of the past.

>

>

>

> I don't know what the interplay is, if any, and the distinction

between potential autoimmune inflammation in the brain and what

inflammation something like beta amyloid might be creating. Are they

inter-related or completely seperate phenomenon? Does anyone have any

thoughts or actual knowledge about this? And, does anyone know what

chemo drug could hypothetically be effective, if ME/CFS is

autoimmune, along the lines that acute high dosing with cytoxan seems

to be showing for the rebooting of fresh nonperverse immune systems

in Lupus and MS?

>

>

>

> BTW, I did some research on brain scans in Alzheimers, etc and

there are plenty of examples in brain scan annals, PET scans

included, that show no sign of plaque and the patients are clearly

deranged in brain function given overt clinical signs. And

conversely, many patients with all kinds of grossly observable plaque

build up showing up on their scans are found to have no discernable

clinical signs or reported symptoms of disease.

>

>

>

>

>

[Guest guest]

> > --- In , and all,

> >

> >

> >

> > I too had I believe a very similar experience you report with a,

> albeit temporary, breakthrough into thinking very clearly and

> effortlessly. I'm very dysfunctional in this way-- especially when

> doing any kind of efforting. Can't work and have any quality life

> like this to say the least.

> >

> >

> >

> > Anyway, there is definitely no feeling in the world like that

> cleared brain " clog " as has been the best word for me over the years

> to characterize it. I thought I had hit the bulleye of what being

> over ME/CFS is really like. What happened to me about this happened

> on just one day five years ago and five days after some oral surgury

> to remove a molar that I needed done. It just so happened towards the

> end of my trial on ampligen.

> >

> >

> >

> > Although the ampligen had clearly been becoming for me not any kind

> of complete solution, it did provide some reduction

> > in feeling weak and a bit fluish(ie,some immunomodulation/anti-

> inflammatory action happened) as had been chronic with me for years.

> Then adding abx and being near the point of completing them post

> surgery caused this clear, virtually instantaneous fever then quick

> reduction of inflammation I felt in my brain on this one evening like

> I'd never felt before.

> >

> >

> >

> > I then got so relaxed with a very rare good kind of tired

> overtaking me and went to bed. I had a great sleep(never happens with

> me) and woke up, then long story short, truly had the most fluid,

> effortless great day that I could only then recall I hadn't had since

> age eleven. And this happening to me, an ME/CFS patient, who swore

> at that time my symptoms/sudden onset started at age 23 with " mono " .

> >

> >

> >

> > Anyway, whatever that was I have never been able to reduplicate

> using other abx, continued ampligen, prednisone, different anti-

> depressants, cortef, moducare, beta glucan, dexamethasone, heparin,

> warfarin, isoprenosine and now the Kane " lipid exchange " , etc..

> Whatever got momentarily altered for 24hrs or cleared in my brain

> leading to the reduction in swelling reorganized itself back to the

> status quo brain inflammation that seems at or near the heart of this

> disease.

> >

> >

> >

> > This talk of the increased beta amyloid/prion-like misfolding in

> the brain seems intriguing along the lines of a very possible culprit

> or product of a culprit at the crux of this inflammation/brain not

> being clear problem. I also know of two patients, directly met one

> of them, along my ME/CFS path over the years who came down with

> cancer and felt absolutely great during their months of treatments

> (minus the temporary nausea espisodes the immediate 2 to 24 hrs

> following treatment days.

> >

> >

> >

> > After their months of treatment, these two woman unknown by each

> other had put their cancer in remission yet all their ME/CFS symptoms

> returned full tilt. They felt horrible again, brain fog/clog and the

> whole enchelada of symptoms was back. I always thought these examples

> said something important about this disease.

> >

> >

> >

> > I've thought also maybe most of us should get some kind of chemo

> therapy, but not like the cancer patients. A treatment like the

> experimental Lupus and MS patients most recently who are successfully

> getting cured receiving in just a matter of days of high dose cytoxan

> (chemo drug/major anti-inflammatory) to quickly destroy and allow for

> the " reboot " of their immune system while carefully preserving their

> bone marrow unlike the much more risky radiation/stem cell transplant

> versions of the past.

> >

> >

> >

> > I don't know what the interplay is, if any, and the distinction

> between potential autoimmune inflammation in the brain and what

> inflammation something like beta amyloid might be creating. Are they

> inter-related or completely seperate phenomenon? Does anyone have any

> thoughts or actual knowledge about this? And, does anyone know what

> chemo drug could hypothetically be effective, if ME/CFS is

> autoimmune, along the lines that acute high dosing with cytoxan seems

> to be showing for the rebooting of fresh nonperverse immune systems

> in Lupus and MS?

> >

> >

> >

> > BTW, I did some research on brain scans in Alzheimers, etc and

> there are plenty of examples in brain scan annals, PET scans

> included, that show no sign of plaque and the patients are clearly

> deranged in brain function given overt clinical signs. And

> conversely, many patients with all kinds of grossly observable plaque

> build up showing up on their scans are found to have no discernable

> clinical signs or reported symptoms of disease.

> >

> >

> >

> >

> >