Re: Whey - Radio Show w/Dr Cheney

[Guest guest]

Amazingly enough, I was doing immunocal almost ten years before Dr

Cheney started recommending it.

I knew a biochemist in Incline who was a formulator for Vitaline

Vitamins and asked him " What would YOU do, if you were in my shoes? "

and wound up doing CoQ10, L-Carnitine and B vitamins almost

instantly after the '85 epidemic. (Thanks Jed)

I told Dr about my improvement on L Carnitine and a few

years later, he identified an Acyl L Carnitine deficiency and

started telling others, but not all had the improvement that I did.

I remember that it was some slight comfort to have my experience

and observation later confirmed by science.

That immunocal was the devil to mix and tasted horrible.

Switched to ImmunoPro when it came out.

I can't say it helped in any noticeable way, in fact I just kept on

getting sicker until I wound up in the ampligen program - which I

couldn't afford and had a lot of drawbacks - like the potential for

relapse if you stop.

When I went " all-out " on mycotoxin avoidance, I improved so much

that I stopped doing all other therapies, and I still have my last

old unused can of ImmunoPro languishing on a shelf gathering dust.

Must be long-expired by now.

-

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

-----------

http://www.co-cure.org/cheney.htm

CFS Radio Program

February 28th, 1999

G. Mazlen, M.D., Host

with

Dr. Cheney

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

-----------

Dr. Mazlen

We are really honored today to have a very eminent guest with us

today, Dr. Cheney. Dr. Cheney is the founder/director of the

Cheney Clinic which is located on Bald Head Island in North

Carolina. He's also prominent from the early beginning of research

into Chronic Fatigue Syndrome or CFIDS. He's a board certified

internist. He additionally trained for two years in tumor immunology

at the CDC and then became Chief of Medicine at the Mount Home

Airforce Base Hospital in Montana. Of course, from there there's a

long history of research and involvement and prominence in the field

of research into Chronic Fatigue Syndrome, so I'm going ask to

tell us a little bit about how that started. , welcome to the

show and we'd like to hear from you now.

Dr. Cheney

Yes, thank you, . My introduction to this illness was as a

practicing internist on the north shore of Lake Tahoe in 1985 when

in the spring of that year we began to see an increasing, actually,

an accelerating number of patients, peaking in the summer of '85 and

then decelerating quickly by the fall of '85, producing about 200

cases in that small area of the California/Nevada line and the

Sierra Nevada Mountains. Initially we thought there was some sort of

flu-like illness among our patients who were previously quite

healthy but over time they would not resolve the symptomatology and

evolved slowly over time a triad of symptoms, characterized by

debilitating fatigue, increasing cognitive disturbances affecting

their ability to function cognitively, and then incredible pain,

particularly muscle pain but also other kinds of accelerated pain.

And that was the triad that we saw and these patients would not get

well. And so we invited both the CDC and later Dr. Komaroff, then

chief of medicine at Harvard who'd been seeing a large number of

cases in Boston to come out and help us research this epidemic

culminating in a publication in the ls of Internal Medicine at

about 1991 describing what we saw in that time.

Dr. Mazlen

Well, of course, it's history and most of the patients with Chronic

Fatigue Syndrome are well aware of your work and and others

in this area and we commend you for those early efforts, but you've

gone a long way since. You've been very much involved nationally in

the area of research into Chronic Fatigue Syndrome. You had

mentioned to me a new concept as to what the disease is as it

develops, when we had spoken prior to the show, maybe you would just

like to go into that a little bit.

Dr. Cheney

Yes, the syndrome we call Chronic Fatigue Syndrome probably belongs

to a larger subset of disorders known as post-infectious or post-

viral syndromes, at least in a hefty subset of patients, perhaps 60-

70% who were perfectly healthy until one day they come down a flu-

like or mono-like illness and aren't the same thereafter. There's a

smaller subset that have more insidious onset and they represent a

different type of illness, but the majority of patients appear to be

a post-infectious or post-viral syndrome. In that regard, there's

another syndrome known as Reye's Syndrome, which evolves typically

in children, although it can hit adults as well, who come down with

a viral illness, sometimes the flu, sometimes chicken pox, and are

resolving the acute viral syndrome and then take a dramatic turn for

the worse almost at the moment they're getting better from the viral

syndrome and the disease we call Reye's is characterized by

disturbed liver function in the aftermath of the viral infection,

that then produces a severe toxicity that affects the central

nervous system and frequently death ensues. And Chronic Fatigue

Syndrome might be viewed as a sort of slowly developing Reye's

Syndrome in that they come down with a viral syndrome and then they

emerge from that with a disorder in liver function and

detoxification at the cellular level, we think involving glutathione

but also other pathways, and that results in a progressive

toxification systemically, particularly from the portal circulation

similar to Reye's and then a hit to the central nervous system,

probably a zenobiotic toxicity to the deep brain structures that

gives us the emerging picture of debilitating fatigue, cognitive

disturbances, hypothalamic-pituitary-adrenal axis disturbances and

severe pain. So, it's sort of like a post-infectious slowly

developing Reye's Syndrome as an analogy to another more acute

illness we call Reye's Syndrome.

Dr. Mazlen

Now, also, there's a connection here which you make me aware of to

the 37 kilodalton variant of the RNase L and I want you to do on and

talk about that.

Dr. Cheney

Right, well, that's a really intriguing issue because no one really

fully understands why liver detoxification fails in Reye's Syndrome,

but in Chronic Fatigue Syndrome there was discovered some years ago

by Dr. Suhadolnik that a very significant up regulation in an

enzymatic pathway known as the 2-5A RNase L pathway was highly

activated in Chronic Fatigue Syndrome. This particular pathway,

although a potent antiviral pathway inhibiting viral protein

synthesis and therefore viral replication, also inhibits human

protein synthesis and enzyme production and could easily be the

cause of this liver detox and cellular detox failure in this

disorder that sets off this compounded set of problems. Dr.

Suhadolnik, a few years after discovering this pathway was highly

activated then discovered it was aberrantly activated with evidence

of a low molecular weight, 37 kDA protein, kDA simply that as

kilodalton, the size of the protein. The normal RNase L is 80

kilodaltons. This low molecular weight is only 37, slightly less

than half the size. This could particular enzyme is extraordinarily

active, over 6 times more active than normal RNase L and it resists

proteolytic degradation and therefore lasts longer in the body and

it can really cream protein synthesis and enzyme production and

cellular function and from that human function.

Dr. Mazlen

Apparently, it also uses up some of the precursors for glutathione

production, is that correct?

Dr. Cheney

Well, it certainly is a rapid cycling enzyme system that consumes

ATP by the bucket load, kind of a black hole for ATP, as it were.

So, it's a consumer of energy, but most importantly, it impairs

enzymatic production in virtually every enzyme in the body. It has a

huge, huge effect on human function.

Dr. Mazlen

So, this is one of the cornerstones, but on the other hand, it's

only been found in about 30-40% of Chronic Fatigue Syndrome cases.

Dr. Cheney

Correct. That was kind of an interesting discovery because we were

hopeful that it might be true marker for this disease, but it was

not to be present in a large subset, but it was primarily present in

the first 5 years of illness and at about 5 years or so, plus or

minus, it begins to down regulate, such that by the 8th to 12th year

of illness there's virtually no 37 kDA left, yet the patients do not

necessarily recover, although we think their illness shifts or

changes as this 37 kDa down regulates.

Dr. Mazlen

I want to ask you, , if you can talk a little bit about your

current research in Chronic Fatigue Syndrome?

Dr. Cheney

Yes, of course we have a number of projects. One is of course

collaborating with Dr. Suhadolnik regarding the 37 kDa protein and

it's meaning in this disorder, but a recent effort at this clinic

has been--actually it's the culmination of several years of looking

at defects in detoxification pathways, in particular the glutathione

system which appears to be particularly impaired in this syndrome

and we tried treating this in a variety of ways, first, obviously

with oral therapy with reduced l-glutathione and injectable

glutathione and in a few cases with precursors to glutathione such

as n-acetylcysteine and although we were seeing modest benefits,

particularly pressure headaches, with reduced l-glutathione, we were

not getting a huge clinical benefit overall and the glutathione

system remained impaired as measured by endpoint markers such as

liver peroxides in the urine. So we began to look out at other

approaches that might work better and we became aware of a weakly

hydrolyzed whey protein concentrate, marketed as Immunocal but in

fact a whey protein concentrate that's weakly hydrolyzed and that

appears to be important in it's effectiveness. We read about this

product and were interested in its potential for improving the

glutathione system and from there wondering if it would help this

disease. So, we launched a program about 6 months ago testing the

efficacy of this in CFIDS and we are, at this point, analyzing the

data and pleasantly surprised at what we're seeing.

Dr. Mazlen

So, you're getting some positive results then?

Dr. Cheney

Yes, we are and we do think, however, there's a subset of patients

that appear not to respond to this product. There's a larger subset

that appears to respond clinically. Some interesting and unexpected

results were seen in the study but overall I think it was a positive

clinical response and other interesting facets of this product

making us a lot more interested and perhaps more aggressive in

treating this glutathione defect with these kinds of products.

Dr. Mazlen

Now, this is a small study so I presume that you feel at this point

it warrant expansion into larger trials. I think so.

Dr. Cheney

We only have 7 patients which isn't a large number, but there was a

very consistent response in several areas suggesting that 7 is

almost enough to make some observations about it, but I think from a

scientific standpoint we'll need more studies and larger numbers.

Dr. Mazlen

Well, it's exciting because anything that's helps this population of

people who reign from moderate to severely ill or totally disabled

is certainly a welcome advent to the therapeutic armamentarium for

us, primary care physicians and researchers. I want to take one

quick call on the line from Jeeney, then we'll go on with other

things. Jeeney, welcome to the show. Do you have a quick question?

Jeeney

My question today is about ampligen. I've been hearing so many mixed

reviews. After you had your study and the people stopped taking the

ampligen, what was that result?

Dr. Cheney

Well, there are several things I think that are important to note

about ampligen. First, of all, there's no doubt in my mind as I've

seen it in clinical practice that this drug is bioactive in this

syndrome. That is it can help people sometimes substantially.

However, it does not help everyone. And it may be that the reason--

there may be a couple of different reasons--one reason may be that

no everyone has activation of this RNase L pathway which ampligen

appears to be very potent at regulating, in CFIDS at least,

downregulating. If that pathway is not activated, then ampligen may

not be very rational or even effective. Ampligen also has potent

antiviral properties as well and I think some of these patients may

not have a significant viral activation state which may be another

reason why it doesn't work in everyone. The other parallel issue for

ampligen is that it appears that the longer that you take it, if you

are responding to it, the better the outcome and in the initial

study in 1991-92 we essentially only treated for 6 months in most

cases, a year at most and that may have been a relative under

treatment and so when you're under treated with ampligen, even if

you're a responder you tend to degrade very quickly when you stop

and conversely, when the drug is treated for longer periods of time

a better clinical therapeutic plateau is reached, there appears to

be some stability at maintaining a plateau once the drug is stopped.

So, I think it's kind of uncertain in my own mind exactly what will

happen when you stop this drug. My sense is that if it's stopped

prematurely, one will end up pretty much back where you were. If

it's maintained over a longer period of time, there's a much better

chance of stability. If you are a responder, the chances of a

response, all comers, appears to be 2 chances in 3 and that might be

raised a little bit if one targets a subset of patients,

specifically ones that are within the first 5 years of their illness

who have abrupt onset and who may have activation of this RNase L

pathway.

Dr. Mazlen

You mentioned earlier, briefly to me, not on the show, but

privately, that there's a significant incidence of chlamydia

pneumoniae found in CFIDS patients. Can you comment further on that?

Dr. Cheney

Yes, of course this syndrome has sort of a long history of viral

and, more recently, non-viral microbial activation reported as

associated with this disorder. For the listening audience, it's

important to distinguish between association of an organism versus

causality, and that's a thing critically important in this syndrome.

This syndrome may represent an immune activation state and with the

disordered glutathione system which can create a sort of biological

terrain in which microorganisms that lay dormant in our bodies

almost back from childhood can activate and then other organisms

that we may catch during our lives, and these organisms are not

typically active, but are kept in a dormant state by our immune

systems indicates that in CFS the conditions are ripe at times for

the reactivation of these dormant and latent organisms. One of these

organisms which is ubiquitous in the population but typically not

active is chlamydia pneumoniae, which has been reported as active in

a large percentage of these cases.

Dr. Mazlen

Well, that's a significant addition because they still have trouble

with a lot of infectious disease specialists in dealing with Chronic

Fatigue Syndrome. Many of them don't feel it has anything

significant if they just show a positive Epstein Barr viral capsid

antibody, IgG, etc.

I want you, , to give me your email address for the audience.

Dr. Cheney

Yes, the email address is... we have a website which is

pcheney@....

Dr. Mazlen

And also I want to mention that if people are interested in getting

research information on Immunocal they can call 212-875-9930 after

the show or call my office at 516-352-9483 for some general

information. We're going to have the patent holder and discover of

the Immunocal process for production, Dr. Gustavo Buonos will be our

guest on March 28th along with Dr. Sommersall and others.

They'll be here live from Montreal so we can pick up on this at that

time. We have a caller on the line, let's go to Caroline. Caroline,

do you have a question?

Caroline

I actually have two. One is that College Pharmacy is selling a

generic Immunocal and I wanted to know whether Dr. Cheney thinks

that is as good or if he's familiar with it and the second is that

if you have the test for the RNase L marker for ampligen and you

don't have that activated pathway, are you definitely not a good

candidate for ampligen?

Dr. Cheney

Very good questions. Regarding generic type products of a whey

protein concentrate, we do know from the patent application

involving Immunocal that in comparison with the typical whey protein

concentrates, the Immunocal product is far superior in it's ability

to improve glutathione status. With regard to other generic products

that might be available however, I can't comment. I haven't looked

at them. Theoretically, in my view it would be possible to make a

generic that would work, I just don't know if a particular generic

will work and that would have to be looked at carefully.

With regard to RNase L itself, if it's not activated doesn't

exclude, in my opinion, a response to ampligen, but rather reduces

the chance somewhat, I don't know how much, but I think there are

people that definitely responded to ampligen to did not have

activation of this pathway because ampligen may do more than just

modulate this enzyme pathway. It has other effects.

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

-----------

Transcribed by

Carolyn Viviani

carolynv@...

Transcript Copyright © 1999 - Carolyn Viviani

Permission is given to repost, copy and distribute this transcript

as long as my name is not removed from it.