Re: News segment on the Whittemore Institute

[Guest guest]

The person speaking in the video clip is Judy Mikovits, PhD. She doesn't say

that her lab

expects to discover THE virus. She says, " " We have identified and are in the

process of

isolating A new virus that MAY cause CFS in this cohort... That was discovered

here, in

this lab. "

Perhaps I'm naive, but it seems to me that she talks like a scientist and that

her

credentials and experience are outstanding:

http://www.wpinstitute.org/about/about_execboard.html

Mikovits also said in the video clip, " The one [test] we have developed with

the five

cytokines and chemokines could within the next year be validated as a diagnostic

for CFS,

clinically. " In the video clip she doesn't say how it might be validated.

I posted this only because it's research, along with other research, that gives

me hope.

Many on this list, at least in the past, had RNaseL and NK cell testing done.

The

Whittemore- website says they are " ...building on previous studies of NK

cells by

Dr. Klimas and the RNase L work of Drs. Suhadolnik and Silverman...

The study titles and descriptions of the basic research are here, and contain

the names of

many familiar researchers:

http://www.wpinstitute.org/research/research_basic.html

All the researchers are working from the same samples, which come from their own

repository--the world's largest for CFS/ME.

Sue B.

> [Moderator: If it is a new virus that causes CFIDS to add to the known list of

those that

can induce CFIDS -- that is good new.If they are asserting they may discover THE

virus --

then they are very likely wrong and approaching the issue with a major false

assumptions]

>

[Guest guest]

I must confess that I still sit around shaking my head. They think

they might find a new viral cause. They think cfs is caused by a

virus. BUT THEY TAKE EVERY PATIENT WHO TESTS POSITIVE FOR BORRELIA

AND REMOVE THEM FROM ANY STUDY OF CFS SAYING THEY DON'T HAVE CFS,

THEY NOW HAVE LYME????? Am I the only one who thinks this is assinine?

I know, I know, we don't know how all the viruses and bacteria

interact to destroy the immune and endocrine system, but still, how

can you just arbitrarily take borrelia off the table?

I do not think these people are smart, and I cannot respect their

work. They are getting funding to study viruses and definitions of

cfs symptoms. That's just the old " look for what you can't find under

the lamppost. Never mind that you lost it in the dark alley. "

a Carnes

[Guest guest]

Hi, a.

In defense of Judy Mikowitz (who, by the way, is VERY smart) and the

group at the Whittemore- Institute, I suspect that they are

studying samples from the original Incline Village outbreak that Dr.

has kept frozen for 20+ years, and I don't have trouble

believing that this outbreak might have been caused by a very virulent

virus. I think Dr. believes this, and I know for a fact that

Dr. Cheney does.

As you know, I have suggested that genetic predisposition is an

important factor in the sporadic cases of CFS, but I have been careful

to say that I think the genetic factor is less important in the

epidemics or clusters, because so many people in one place were

involved during the same limited period of time, suggesting that their

genetic makeup may not have been very important in determining whether

they " caught " it.

The CFS population as currently defined is very heterogeneous. Let's

give this group credit for studying at least one subset, and actually

the original subset that brought the CDC into the picture and at least

led to a case definition and some recognition for the disorder, even

though the definition is not very precise, and even though they

probably should have taken a closer look to see if they were actually

dealing with ME in Incline Village. I believe in the divide and

conquer approach to the CFS subsets, because I think it is the only way

we are going to succeed, and this group seems to be taking that

approach.

I don't disagree that more attention is needed to the connection

between Lyme disease and CFS, and in fact, as you know, I'm planning to

present a poster paper on a possible link at the March 2009 IACFS/ME

conference in Reno, which has been accepted.

Best regards,

Rich

[Guest guest]

Well CFS is a syndrome as its defined. A (rather large) set of symptoms with no

officially

known cause. Many of these symptoms can be caused by other (known) illnesses.

To get

the diagnosis of CFS in the first place, they are supposed to exclude those

illnesses. Some

of those illnesses are hard to diagnose and don't have reliable tests (such as

lyme). So in

the strictest sense, if you have the symptoms of " CFS " and then are later found

to have

Lyme disease, you no longer have the " syndrome " CFS, but you technically have

Lyme

disease.

With respect to the WPI, they probably feel they are screening people for Lyme

adequately

and concentrating on those who appear to have symptoms that qualify for " CFS "

(meaning

they can't find what causes them). Whether it is possible to accurately rule

Lyme out with

todays testing is another story...

Its all semantics and technicalities. They chose not to research Lyme because

they think

CFS is a different entity than Lyme. Time will tell if they are right...

> I must confess that I still sit around shaking my head. They think

> they might find a new viral cause. They think cfs is caused by a

> virus. BUT THEY TAKE EVERY PATIENT WHO TESTS POSITIVE FOR BORRELIA

> AND REMOVE THEM FROM ANY STUDY OF CFS SAYING THEY DON'T HAVE CFS,

> THEY NOW HAVE LYME????? Am I the only one who thinks this is assinine?

[Guest guest]

>

> Hi, a.

>

> In defense of Judy Mikowitz (who, by the way, is VERY smart) and the

> group at the Whittemore- Institute, I suspect that they are

> studying samples from the original Incline Village outbreak that Dr.

> has kept frozen for 20+ years, and I don't have trouble

> believing that this outbreak might have been caused by a very

virulent

> virus. I think Dr. believes this, and I know for a fact

that

> Dr. Cheney does.

*****Rich, there is a kind of intelligence that will win a chess

game. It is not the kind that gets excited about every pawn on the

board. It looks at how various pieces of the game interact. Was there

a virus that went through the school at Incline Village? Was there

toxic mold in the building? What about exposure to mycoplasma?

Certainly tick borne pathogens could play a role in northern

California. What genetically was true of the folks in the building

who never got sick? (Is anyone listening to Mold Warrior?)

>

> As you know, I have suggested that genetic predisposition is an

> important factor in the sporadic cases of CFS, but I have been

careful

> to say that I think the genetic factor is less important in the

> epidemics or clusters, because so many people in one place were

> involved during the same limited period of time, suggesting that

their

> genetic makeup may not have been very important in determining

whether

> they " caught " it.

*****I don't think there is a case of cfs that isn't an epidemic. My

small town in South Carolina had over 100 folks with fibromyalgia

around 1997. This was unheard of in the 50s and 60s. These people

were sick with something. Most of them worked in gardens and fished

at the river on weekends. We all got tick bites. We also worked in

toxic buildings with air conditioning and locked windows.

>

> The CFS population as currently defined is very heterogeneous.

Let's

> give this group credit for studying at least one subset, and

actually

> the original subset that brought the CDC into the picture and at

least

> led to a case definition and some recognition for the disorder, even

> though the definition is not very precise, and even though they

> probably should have taken a closer look to see if they were

actually

> dealing with ME in Incline Village. I believe in the divide and

> conquer approach to the CFS subsets, because I think it is the only

way

> we are going to succeed, and this group seems to be taking that

> approach.

*****Most of the subset you say they are studying are still sick or

have died. I think you should ask if any of them are still being

studied. Also, what will they test for in the blood samples. I have

been tested for every commonly tested virus and bacteria there is -

but that didn't even include bartonella, babesia or borrelia except

for a western blot without including all the bands, so negative. But

I have several positive bands at IgeneX and positive urine antigen

with a positive reverse western blot on that.

Cheney is in North Carolina. He took no interest in my case - none

when I already had a postive PCR for mycoplasma and evidence of white

blood cell infection under microscopy. I am sorry, but that is not

science or smart. He wasn't treating Incline Village. He was treating

patients in North and South Carolina. I was the only patient in the

Charlotte, NC support group who recovered at all. I have to add that

I am not fully recovered and have been severely harmed by quinolone

antibiotics, so I am not about to claim that there is some magic fix

for borrelia infection or c. pneumonia or HHV6 etc. I am claiming

that ignoring bacterial infections and claiming you have adequate

tests to diagnose such is ignorance of the worst sort.

>

> I don't disagree that more attention is needed to the connection

> between Lyme disease and CFS, and in fact, as you know, I'm

planning to

> present a poster paper on a possible link at the March 2009 IACFS/ME

> conference in Reno, which has been accepted.

*****Yes, bless your heart, I am so pleased that you include this. I

also am turning increasingly toward your study indicating a need to

treat the damaged immune and endocrine system of folks like myself

using your approach. I'm trying some of your approach and hope to

post more on how I am doing soon. I'm being treated by a doctor in

California who is using a lot of your information.

Right now I am focused on cataract surgery tomorrow and will be able

to focus on more cfs details later.

a Carnes

>

> Best regards,

>

> Rich

>

[Guest guest]

Dr. Cheney, told me he spent many years of his CFS career " chasing bugs " .

And, treating bugs. Even when clearing some of " the bugs " , the disease remained.

In the case of antibiotics, many of us can barely tolerate them or a limited

number of them.

(This is pretty scary, when after many years ill, one has significant Cardiac

abnormalities, and gets an antibiotic resistent Pneumonia, with an ever

shortening list of abx to try).

He has also said why make his patients " gut cripples " w/antibiotics, when they

do not cure their CFS?

He still believes there was a viral onset, but he told me in 2005/6, he had

stopped chasing bugs, and was focusing on " the terrain " . If that is understood

and corrected, the bugs will go, too, by the body's natural processes.

{ Scientists already have long debated the " bugs vs. terrain " question}.

But, he still prescribed anti-virals, antibiotics, anti-fungals, as deemed

appropriate.

I believe he revisits the viral issue as more Science and more antiviral

treatment and data emerges. (Current times would seem to be an example).

Katrina

>

> > From: pjeanneus <pj7@...>

> > Subject: Re: News segment on the Whittemore Institute

> >

> > Date: Tuesday, December 16, 2008, 9:35 PM

> > >

> > > Hi, a.

> > >

> > > In defense of Judy Mikowitz (who, by the way, is VERY

> > smart) and the

> > > group at the Whittemore- Institute, I suspect

> > that they are

> > > studying samples from the original Incline Village

> > outbreak that Dr.

> > > has kept frozen for 20+ years, and I

> > don't have trouble

> > > believing that this outbreak might have been caused by

> > a very

> > virulent

> > > virus. I think Dr. believes this, and I know

> > for a fact

> > that

> > > Dr. Cheney does.

> >

> > *****Rich, there is a kind of intelligence that will win a

> > chess

> > game. It is not the kind that gets excited about every pawn

> > on the

> > board. It looks at how various pieces of the game interact.

> > Was there

> > a virus that went through the school at Incline Village?

> > Was there

> > toxic mold in the building? What about exposure to

> > mycoplasma?

> > Certainly tick borne pathogens could play a role in

> > northern

> > California. What genetically was true of the folks in the

> > building

> > who never got sick? (Is anyone listening to Mold

> > Warrior?)

> >

> >

> > >

> > > As you know, I have suggested that genetic

> > predisposition is an

> > > important factor in the sporadic cases of CFS, but I

> > have been

> > careful

> > > to say that I think the genetic factor is less

> > important in the

> > > epidemics or clusters, because so many people in one

> > place were

> > > involved during the same limited period of time,

> > suggesting that

> > their

> > > genetic makeup may not have been very important in

> > determining

> > whether

> > > they " caught " it.

> >

> > *****I don't think there is a case of cfs that

> > isn't an epidemic. My

> > small town in South Carolina had over 100 folks with

> > fibromyalgia

> > around 1997. This was unheard of in the 50s and 60s. These

> > people

> > were sick with something. Most of them worked in gardens

> > and fished

> > at the river on weekends. We all got tick bites. We also

> > worked in

> > toxic buildings with air conditioning and locked windows.

> > >

> > > The CFS population as currently defined is very

> > heterogeneous.

> > Let's

> > > give this group credit for studying at least one

> > subset, and

> > actually

> > > the original subset that brought the CDC into the

> > picture and at

> > least

> > > led to a case definition and some recognition for the

> > disorder, even

> > > though the definition is not very precise, and even

> > though they

> > > probably should have taken a closer look to see if

> > they were

> > actually

> > > dealing with ME in Incline Village. I believe in the

> > divide and

> > > conquer approach to the CFS subsets, because I think

> > it is the only

> > way

> > > we are going to succeed, and this group seems to be

> > taking that

> > > approach.

> >

> > *****Most of the subset you say they are studying are still

> > sick or

> > have died. I think you should ask if any of them are

> > still being

> > studied. Also, what will they test for in the blood

> > samples. I have

> > been tested for every commonly tested virus and bacteria

> > there is -

> > but that didn't even include bartonella, babesia or

> > borrelia except

> > for a western blot without including all the bands, so

> > negative. But

> > I have several positive bands at IgeneX and positive urine

> > antigen

> > with a positive reverse western blot on that.

> >

> > Cheney is in North Carolina. He took no interest in my case

> > - none

> > when I already had a postive PCR for mycoplasma and

> > evidence of white

> > blood cell infection under microscopy. I am sorry, but that

> > is not

> > science or smart. He wasn't treating Incline Village.

> > He was treating

> > patients in North and South Carolina. I was the only

> > patient in the

> > Charlotte, NC support group who recovered at all. I have to

> > add that

> > I am not fully recovered and have been severely harmed by

> > quinolone

> > antibiotics, so I am not about to claim that there is some

> > magic fix

> > for borrelia infection or c. pneumonia or HHV6 etc. I am

> > claiming

> > that ignoring bacterial infections and claiming you have

> > adequate

> > tests to diagnose such is ignorance of the worst sort.

> > >

> > > I don't disagree that more attention is needed to

> > the connection

> > > between Lyme disease and CFS, and in fact, as you

> > know, I'm

> > planning to

> > > present a poster paper on a possible link at the March

> > 2009 IACFS/ME

> > > conference in Reno, which has been accepted.

> >

> > *****Yes, bless your heart, I am so pleased that you

> > include this. I

> > also am turning increasingly toward your study indicating a

> > need to

> > treat the damaged immune and endocrine system of folks like

> > myself

> > using your approach. I'm trying some of your approach

> > and hope to

> > post more on how I am doing soon. I'm being treated by

> > a doctor in

> > California who is using a lot of your information.

> >

> > Right now I am focused on cataract surgery tomorrow and

> > will be able

> > to focus on more cfs details later.

> >

> > a Carnes

> > >

> > > Best regards,

> > >

> > > Rich

> > >

>

[Guest guest]

Hi Cort,

Okay, how about I write that no one at Incline Village completely

recovered?

Since I have been in the Lyme community for a few years I have to say

that I haven't seen anyone there completely recover either. My

husband and one son are doing well, but they still have symptoms at

times. Antibiotics are not the magic fix, but neither is it wise to

not use antibiotics at all.

As to rapid or slow onset, I tend to think this is a product of genes

and general health. The doctor thinks my son has had borrelia since

birth, but he is very healthy and young, so he may be able to

withstand the chronic infection. Some of the top Lyme specialists say

that a rapid onset is the tick that broke the camel's back - the last

tick bite you got finally pushed you under. I am sure this is true in

my case. (a combo of many tick bites,mycoplasmas, viruses and a toxic

building)

As to the studies testing patients for Lyme - the reality is that

there aren't good tests for borrelia or babesia. IgeneX is the best

using western blots and reporting on all the bands. Then a reverse

western blot on any positive urine antigen samples. Dr. is

not doing that.

One more thought, I seriously doubt that borrelia was a key player in

the Incline Village outbreak. My hunch would be airborne mycoplasma,

c. pneumonia, and toxic mold in the building. Through in a couple of

viruses and you get a perfect storm that is all but untreatable.

But to say the underlying cause is genetic, no matter the locus,

makes no sense. We did not suddenly become a world of genetic mutants

whose immune systems do not work. Something happened to produce new

bacteria and new routes of transmission. Nothing else makes sense in

terms of cause.

a Carnes

>

> No one's listening to mold warrior.

>

> My understanding is that Cheney has long given up the belief that

the initial trigger, whether its a virus or whatever, is important. A

good portion of the Incline Village subset had a gradual onset as

well. The physicians there found no reason to differentiate the

infectious onset and gradual onset patients. If that was an important

factor in Cheney's treatment we would have seen it in his protocols;

ie separate protocols for each group.

>

> It's also not true that most of the Incline Village patients died

or remained severely ill. Check out the end of Osler's Web; some

remained very ill but a surprising number improved substantially. A

follow up study found the same thing - that most had improved

greatly. It actually sounded like many had recovered - which brings

up the question whether there are two types of illness; a post-viral

fatigue illness - that is EASIER to recover from than CFS and CFS.

One study suggested this was true.

>

> (Check out the overview of Symposium on Viruses in CFS)

>

> I believe the WPI is taking a very open ended look at pathogens: my

understanding is that they trying to check for every pathogen in

existence using their gene expression (or whatever) tests. This means

they are not ignoring Lyme disease. If it shows up in large

quantities then it does, if it doesn't it doesn't. I'm sure there are

people with Lyme in this disease or enterovirus or HHV6; lots of

different subsets. The lucky ones have a primary infection that can

be treated and the unlucky ones have a co morbid secondary infection

that can be suppressed and something else wrong that cannot at this

time be successfully treated.

>

> Good luck with the surgery!

>

> Cort

>

>

>

>

> > From: pjeanneus <pj7@...>

> > Subject: Re: News segment on the Whittemore

Institute

> >

> > Date: Tuesday, December 16, 2008, 9:35 PM

> > >

> > > Hi, a.

> > >

> > > In defense of Judy Mikowitz (who, by the way, is VERY

> > smart) and the

> > > group at the Whittemore- Institute, I suspect

> > that they are

> > > studying samples from the original Incline Village

> > outbreak that Dr.

> > > has kept frozen for 20+ years, and I

> > don't have trouble

> > > believing that this outbreak might have been caused by

> > a very

> > virulent

> > > virus. I think Dr. believes this, and I know

> > for a fact

> > that

> > > Dr. Cheney does.

> >

> > *****Rich, there is a kind of intelligence that will win a

> > chess

> > game. It is not the kind that gets excited about every pawn

> > on the

> > board. It looks at how various pieces of the game interact.

> > Was there

> > a virus that went through the school at Incline Village?

> > Was there

> > toxic mold in the building? What about exposure to

> > mycoplasma?

> > Certainly tick borne pathogens could play a role in

> > northern

> > California. What genetically was true of the folks in the

> > building

> > who never got sick? (Is anyone listening to Mold

> > Warrior?)

> >

> >

> > >

> > > As you know, I have suggested that genetic

> > predisposition is an

> > > important factor in the sporadic cases of CFS, but I

> > have been

> > careful

> > > to say that I think the genetic factor is less

> > important in the

> > > epidemics or clusters, because so many people in one

> > place were

> > > involved during the same limited period of time,

> > suggesting that

> > their

> > > genetic makeup may not have been very important in

> > determining

> > whether

> > > they " caught " it.

> >

> > *****I don't think there is a case of cfs that

> > isn't an epidemic. My

> > small town in South Carolina had over 100 folks with

> > fibromyalgia

> > around 1997. This was unheard of in the 50s and 60s. These

> > people

> > were sick with something. Most of them worked in gardens

> > and fished

> > at the river on weekends. We all got tick bites. We also

> > worked in

> > toxic buildings with air conditioning and locked windows.

> > >

> > > The CFS population as currently defined is very

> > heterogeneous.

> > Let's

> > > give this group credit for studying at least one

> > subset, and

> > actually

> > > the original subset that brought the CDC into the

> > picture and at

> > least

> > > led to a case definition and some recognition for the

> > disorder, even

> > > though the definition is not very precise, and even

> > though they

> > > probably should have taken a closer look to see if

> > they were

> > actually

> > > dealing with ME in Incline Village. I believe in the

> > divide and

> > > conquer approach to the CFS subsets, because I think

> > it is the only

> > way

> > > we are going to succeed, and this group seems to be

> > taking that

> > > approach.

> >

> > *****Most of the subset you say they are studying are still

> > sick or

> > have died. I think you should ask if any of them are

> > still being

> > studied. Also, what will they test for in the blood

> > samples. I have

> > been tested for every commonly tested virus and bacteria

> > there is -

> > but that didn't even include bartonella, babesia or

> > borrelia except

> > for a western blot without including all the bands, so

> > negative. But

> > I have several positive bands at IgeneX and positive urine

> > antigen

> > with a positive reverse western blot on that.

> >

> > Cheney is in North Carolina. He took no interest in my case

> > - none

> > when I already had a postive PCR for mycoplasma and

> > evidence of white

> > blood cell infection under microscopy. I am sorry, but that

> > is not

> > science or smart. He wasn't treating Incline Village.

> > He was treating

> > patients in North and South Carolina. I was the only

> > patient in the

> > Charlotte, NC support group who recovered at all. I have to

> > add that

> > I am not fully recovered and have been severely harmed by

> > quinolone

> > antibiotics, so I am not about to claim that there is some

> > magic fix

> > for borrelia infection or c. pneumonia or HHV6 etc. I am

> > claiming

> > that ignoring bacterial infections and claiming you have

> > adequate

> > tests to diagnose such is ignorance of the worst sort.

> > >

> > > I don't disagree that more attention is needed to

> > the connection

> > > between Lyme disease and CFS, and in fact, as you

> > know, I'm

> > planning to

> > > present a poster paper on a possible link at the March

> > 2009 IACFS/ME

> > > conference in Reno, which has been accepted.

> >

> > *****Yes, bless your heart, I am so pleased that you

> > include this. I

> > also am turning increasingly toward your study indicating a

> > need to

> > treat the damaged immune and endocrine system of folks like

> > myself

> > using your approach. I'm trying some of your approach

> > and hope to

> > post more on how I am doing soon. I'm being treated by

> > a doctor in

> > California who is using a lot of your information.

> >

> > Right now I am focused on cataract surgery tomorrow and

> > will be able

> > to focus on more cfs details later.

> >

> > a Carnes

> > >

> > > Best regards,

> > >

> > > Rich

> > >

>

[Guest guest]

Cheney did not, to my knowledge, test his patients for mycoplasmas in

the late 1990s. I have never heard of him using IgeneX to test for

borrelia in any patients.

He told an audience that he worried about antibiotics damaging the

gut. At the question time I stood and mentioned that Zithromax had

cured all my gut problems. The audience went nuts. One woman asked

Cheney if she should take Zithromax.

He kind of freaked out, turned red in the face and said, " We don't

relly know what Zithromax is doing. " Then he changed the subject.

I don't consdier that " chasing bugs. "

What am I missing?

I believe in treating the terrain. Obviously antibiotics are not

CURING Lyme or cfs. Neither is Ampligen or Valcyte. We are going to

have to put the whole thing together. We are probably not going to

see a cure in our lifetimes. But we might get better.

a Carnes

>

>

> Dr. Cheney, told me he spent many years of his CFS career " chasing

bugs " .

>

> And, treating bugs. Even when clearing some of " the bugs " , the

disease remained.

>

> In the case of antibiotics, many of us can barely tolerate them or

a limited number of them.

>

> (This is pretty scary, when after many years ill, one has

significant Cardiac abnormalities, and gets an antibiotic resistent

Pneumonia, with an ever shortening list of abx to try).

>

> He has also said why make his patients " gut cripples "

w/antibiotics, when they do not cure their CFS?

>

> He still believes there was a viral onset, but he told me in

2005/6, he had stopped chasing bugs, and was focusing on " the

terrain " . If that is understood and corrected, the bugs will go, too,

by the body's natural processes.

> { Scientists already have long debated the " bugs vs. terrain "

question}.

>

> But, he still prescribed anti-virals, antibiotics, anti-fungals, as

deemed appropriate.

>

> I believe he revisits the viral issue as more Science and more

antiviral treatment and data emerges. (Current times would seem to be

an example).

>

> Katrina

[Guest guest]

I felt that the qustion on mold was also avoided by them/the lecture

by dr peterson that I attended.

amy

>

> I must confess that I still sit around shaking my head. They think

> they might find a new viral cause. They think cfs is caused by a

> virus. BUT THEY TAKE EVERY PATIENT WHO TESTS POSITIVE FOR BORRELIA

> AND REMOVE THEM FROM ANY STUDY OF CFS SAYING THEY DON'T HAVE CFS,

> THEY NOW HAVE LYME????? Am I the only one who thinks this is

assinine?

>

> I know, I know, we don't know how all the viruses and bacteria

> interact to destroy the immune and endocrine system, but still, how

> can you just arbitrarily take borrelia off the table?

>

> I do not think these people are smart, and I cannot respect their

> work. They are getting funding to study viruses and definitions of

> cfs symptoms. That's just the old " look for what you can't find

under

> the lamppost. Never mind that you lost it in the dark alley. "

>

> a Carnes

>

[Guest guest]

Thats a good question. What *is* Zithromax doing? I have heard completely

opposing

opinions from various Drs. The Lyme guys say its treating a bacteria, the

CFSIDS guys say it

" modulates the cytokine response " and some other docs say it just supresses bad

bacteria in

the gut. Considering a subset of CFS people seem to respond well to this drug,

shouldn't the

researches be trying to figure this one out?

I'd be curious to see how many people feel better on Zithromax, maybe I should

start a poll...

and do people who take it " herx " , or get worse before getting better?

Where is the science that says it does one thing or another? Is there any basis

for the claim

that it " modulates cytokines " or " treats lyme " or whatever? Citations?

A

> He kind of freaked out, turned red in the face and said, " We don't

> relly know what Zithromax is doing. " Then he changed the subject.

>

[Guest guest]

Cort said "

> No one's listening to mold warrior. "

That's not exactly true. There is a band of second-battalion mold

warriors who are actually doing quite well by following 's

mold-avoidance techniques, myself included.

K

>

> > From: pjeanneus <pj7@...>

> > Subject: Re: News segment on the Whittemore

Institute

> >

> > Date: Tuesday, December 16, 2008, 9:35 PM

> > >

> > > Hi, a.

> > >

> > > In defense of Judy Mikowitz (who, by the way, is VERY

> > smart) and the

> > > group at the Whittemore- Institute, I suspect

> > that they are

> > > studying samples from the original Incline Village

> > outbreak that Dr.

> > > has kept frozen for 20+ years, and I

> > don't have trouble

> > > believing that this outbreak might have been caused by

> > a very

> > virulent

> > > virus. I think Dr. believes this, and I know

> > for a fact

> > that

> > > Dr. Cheney does.

> >

> > *****Rich, there is a kind of intelligence that will win a

> > chess

> > game. It is not the kind that gets excited about every pawn

> > on the

> > board. It looks at how various pieces of the game interact.

> > Was there

> > a virus that went through the school at Incline Village?

> > Was there

> > toxic mold in the building? What about exposure to

> > mycoplasma?

> > Certainly tick borne pathogens could play a role in

> > northern

> > California. What genetically was true of the folks in the

> > building

> > who never got sick? (Is anyone listening to Mold

> > Warrior?)

> >

> >

> > >

> > > As you know, I have suggested that genetic

> > predisposition is an

> > > important factor in the sporadic cases of CFS, but I

> > have been

> > careful

> > > to say that I think the genetic factor is less

> > important in the

> > > epidemics or clusters, because so many people in one

> > place were

> > > involved during the same limited period of time,

> > suggesting that

> > their

> > > genetic makeup may not have been very important in

> > determining

> > whether

> > > they " caught " it.

> >

> > *****I don't think there is a case of cfs that

> > isn't an epidemic. My

> > small town in South Carolina had over 100 folks with

> > fibromyalgia

> > around 1997. This was unheard of in the 50s and 60s. These

> > people

> > were sick with something. Most of them worked in gardens

> > and fished

> > at the river on weekends. We all got tick bites. We also

> > worked in

> > toxic buildings with air conditioning and locked windows.

> > >

> > > The CFS population as currently defined is very

> > heterogeneous.

> > Let's

> > > give this group credit for studying at least one

> > subset, and

> > actually

> > > the original subset that brought the CDC into the

> > picture and at

> > least

> > > led to a case definition and some recognition for the

> > disorder, even

> > > though the definition is not very precise, and even

> > though they

> > > probably should have taken a closer look to see if

> > they were

> > actually

> > > dealing with ME in Incline Village. I believe in the

> > divide and

> > > conquer approach to the CFS subsets, because I think

> > it is the only

> > way

> > > we are going to succeed, and this group seems to be

> > taking that

> > > approach.

> >

> > *****Most of the subset you say they are studying are still

> > sick or

> > have died. I think you should ask if any of them are

> > still being

> > studied. Also, what will they test for in the blood

> > samples. I have

> > been tested for every commonly tested virus and bacteria

> > there is -

> > but that didn't even include bartonella, babesia or

> > borrelia except

> > for a western blot without including all the bands, so

> > negative. But

> > I have several positive bands at IgeneX and positive urine

> > antigen

> > with a positive reverse western blot on that.

> >

> > Cheney is in North Carolina. He took no interest in my case

> > - none

> > when I already had a postive PCR for mycoplasma and

> > evidence of white

> > blood cell infection under microscopy. I am sorry, but that

> > is not

> > science or smart. He wasn't treating Incline Village.

> > He was treating

> > patients in North and South Carolina. I was the only

> > patient in the

> > Charlotte, NC support group who recovered at all. I have to

> > add that

> > I am not fully recovered and have been severely harmed by

> > quinolone

> > antibiotics, so I am not about to claim that there is some

> > magic fix

> > for borrelia infection or c. pneumonia or HHV6 etc. I am

> > claiming

> > that ignoring bacterial infections and claiming you have

> > adequate

> > tests to diagnose such is ignorance of the worst sort.

> > >

> > > I don't disagree that more attention is needed to

> > the connection

> > > between Lyme disease and CFS, and in fact, as you

> > know, I'm

> > planning to

> > > present a poster paper on a possible link at the March

> > 2009 IACFS/ME

> > > conference in Reno, which has been accepted.

> >

> > *****Yes, bless your heart, I am so pleased that you

> > include this. I

> > also am turning increasingly toward your study indicating a

> > need to

> > treat the damaged immune and endocrine system of folks like

> > myself

> > using your approach. I'm trying some of your approach

> > and hope to

> > post more on how I am doing soon. I'm being treated by

> > a doctor in

> > California who is using a lot of your information.

> >

> > Right now I am focused on cataract surgery tomorrow and

> > will be able

> > to focus on more cfs details later.

> >

> > a Carnes

> > >

> > > Best regards,

> > >

> > > Rich

> > >

>

[Guest guest]

I'm a little confused because is a sufferer of CFS, not a doctor

or a research scientist. I'm under the impression that he would

dearly love for a doctor or research scientist to look into this

completely and come up with a technique. But it shouldn't be up to .

Although, those of us who have experimented with his ideas have

achieved a great deal of improvement. In my case, for instance, I

started following his advice and achieving improvement long before we

confirmed mold in my house. I left the house for a period of time

and, following his clues, felt tremendous improvement within a month.

Going back to the house, however, darn near killed me. Later, we did

actually discover the mold in between the walls.

I was also under the impression that was in the original Incline

cohort, so I'm not sure how we could identify his case as " atypical "

if he was of that group. I suppose, though, that you could consider

it " atypical " if you are talking about CDC-CFS.

Anyway, it's helping me. I can walk my dog for a mile and back,

whereas a year ago I couldn't go to the bathroom by myself. That's

something. And it's helping others. I'm not saying it's for you, or

that everybody must do it. All I'm saying is that it's working for a

growing number, and therefore I guess it should be talked about as

another Experimental approach.

[Guest guest]

Doris, that's pretty much my story too. Almost verbatim.

Khaly

>

> Exactly.

> I am 100% cured and although I had numerous problems (mercury

poisoning, EBV, HHV6, CMV, antibiotic resistant staph in my sinuses,

hypercoagulation, poor immune function, hypotension, multiple chemical

sensitivities, and more), it was getting away from the mold that cured

me. Then one by one, everything else went away.

>

> Doris

>

> ----- Original Message -----

> From: khalyal

>

> Cort said "

> > No one's listening to mold warrior. "

>

> That's not exactly true. There is a band of second-battalion mold

> warriors who are actually doing quite well by following 's

> mold-avoidance techniques, myself included.

>

> K

>

> . _,_._,___

>

>

[Guest guest]

Thanks, Cort. It's stachybotrys that he had a problem with, and it

appears to be my problem as well.

Actually, what he told me was not just to get out of the house, but to

get out of the house without taking anything with me. Then to go to

the most pristine place possible and stay there for as long as

possible. If the mold in my house was the culprit, then staying in a

pristine setting long enough to feel considerably better would allow

my immune response to die down. At that point, going back to the

source of the problem (stachy in my house) should send me into a CNS

episode quickly and severely. That's the intensification reaction,

and that's exactly what happened to me.

Over the course of the last year, with diligent avoidance, the

intensification reaction has gotten so, well, intense, that it just

takes me minutes to realize I'm in a bad place. It goes like this -

change of mood for no apparent reason, then brain compression, then

migraine, then floor. The intensification reaction is a blessing,

because I've learned to leave at mood change, and at least not to push

it past brain compression.

As a result, I can live my life. There are places I can't go to and

stay for great lengths of time. There are not many places that I have

to avoid completely, but there are a handful.

My MCS has disappeared, as have my kidney and gall bladder issues.

Last year I was bedridden, drooling, and headbobbling. I'm not now.

Like he says, a heck of a clue.

Anyway, I know you weren't trying to make him be a research scientist.

And I know he didn't do any blood tests. But we are not bloodtesting

in order to pursue other experimental treatments either, such as

Amygdala retraining. The proof is in the experiment, the guinea pig

being the CFSer who follows the lead and either gets better or doesn't.

>

> > From: khalyal <khalyal@...>

> > Subject: Re: News segment on the Whittemore

Institute

> >

> > Date: Thursday, December 18, 2008, 7:46 PM

> > I'm a little confused because is a sufferer of CFS,

> > not a doctor

> > or a research scientist. I'm under the impression that

> > he would

> > dearly love for a doctor or research scientist to look into

> > this

> > completely and come up with a technique. But it

> > shouldn't be up to .

> >

> > Although, those of us who have experimented with his ideas

> > have

> > achieved a great deal of improvement. In my case, for

> > instance, I

> > started following his advice and achieving improvement long

> > before we

> > confirmed mold in my house. I left the house for a period

> > of time

> > and, following his clues, felt tremendous improvement

> > within a month.

> > Going back to the house, however, darn near killed me.

> > Later, we did

> > actually discover the mold in between the walls.

> >

> > I was also under the impression that was in the

> > original Incline

> > cohort, so I'm not sure how we could identify his case

> > as " atypical "

> > if he was of that group. I suppose, though, that you could

> > consider

> > it " atypical " if you are talking about CDC-CFS.

> >

> > Anyway, it's helping me. I can walk my dog for a mile

> > and back,

> > whereas a year ago I couldn't go to the bathroom by

> > myself. That's

> > something. And it's helping others. I'm not

> > saying it's for you, or

> > that everybody must do it. All I'm saying is that

> > it's working for a

> > growing number, and therefore I guess it should be talked

> > about as

> > another Experimental approach.

>

[Guest guest]

what do you mean by brain compression?

>

It goes like this -

> change of mood for no apparent reason, then brain compression, then

> migraine, then floor. The intensification reaction is a blessing,

> because I've learned to leave at mood change, and at least not to push

> it past brain compression.

>

[Guest guest]

Oh, he HAS done the genetic testing, at Shoemaker's request. He has

the double-dreaded genetic typing, according to Shoemaker - genetic

susceptibility for both mold and Lyme.

>

> Actually, what he told me was not just to get out of the house, but to

> get out of the house without taking anything with me.

>

> >> Most people leave for a week and think that was a good test. The

problem is if your body is completely wacked out and full of

infections and all the other problems, it's going to take a lot longer

than a week. You might need to leave for a month or several months.

>

> Anyway, I know you weren't trying to make him be a research scientist.

> And I know he didn't do any blood tests.

>

> >> Why not? The blood test is pretty simple. A couple hundred bucks

and you know if you are one of the 5% of people who can't detox mold

toxins. It shouldn't be too hard to find a doctor knowledgeable about

Shoemakers book / website. Or your doctor can consult with Shoemaker

or you can go directly to him.

>

> Doris

>

>

>

>

[Guest guest]

Ditto everything you've written, Doris.

However, I'm only " 100% cured " insofar as I avoid mold extremely

scrupulously. My sensitivity to very small amounts (e.g. on my

clothes after I've briefly passed through a somewhat problematic

building) makes it a challenge to stay at that " wholly well " level.

Would you please share how carefully you need to pay attention to mold

in order to feel well?

Thanks.

>

> Exactly.

> I am 100% cured and although I had numerous problems (mercury

poisoning, EBV, HHV6, CMV, antibiotic resistant staph in my sinuses,

hypercoagulation, poor immune function, hypotension, multiple chemical

sensitivities, and more), it was getting away from the mold that cured

me. Then one by one, everything else went away.

>

> Doris