Fatigue & Fibromyalgia Center

[Guest guest]

Hello,

I was wondering if the guy that went to the Fatigue & Fibromyalgia Center

could give an updated report. They support group leader here in Sacramento

wanted to share some information at the support group meeting this Sunday

afternoon.

Thanks,

Du Pre

Website: http://www.angelfire.com/poetry/soareagle/index.html

" By words the mind is winged. " Aristophanes

[Guest guest]

Hi Steve,

The Fatigue & Fibromyalgia center called Monday for the phone consult.

There was 26 pages of test results. And we went though them one bye one.

I had 18 abnormal tests.

A lot of the typical virus I see others talking about. Epstein-barr etc.

I was way off on 3 on of the test. Thyroid Perroxidase AB 82 (normal = >35)

Rnase - Activity 20 (normal = 1

-10%)

NK Cell activity 6.10 (normal =

20-50)

They added NK-Stem, and something for the thyroid, (I can't spell it but is

cheap about $20.) to the other 8 items they want me to take.

(CoQ10, ENADA, FM relief, NT factor, Super Multiple (probably vitamins),

ProBoost, Enzyme Rx, Rest & Restore. )

The plan is to get stronger for about 4 more weeks they start with the

anti-biotics.

(So far I can only take very small amounts of the supplements, except for the

proboost. (The proboost is great.)

I am slowly able to take more every few days.) It feels like once I can take the

full amount of NT Factor I'll be much better.

They also said when you kill a virus the toxins in the cell get release and that

makes the person sicker. And that is how this stuff feels. But when I stop for a

few days, I'm noticeably improved.

I'm not sure if this was posted to this group.

http://www.hhmi.org/news/chen.html

But it seems they now know the exact protein the body is missing, causing the

non-functioning immune-system cells to stay non-functioning. (The

non-functioning cells need to self destruct so that new working ones can replace

them.)

It seemed to me the center did not have an explanation on whats going on, but

have seem may others, (They claim about 3,000 in this first year.) have recover.

And if it is true that the problem is with the non-functioning immune-system

cells, that don't self destruct, then the supplements to boost the cells makes

sense.

When I feel up to it I hope to scan the test and post them. These are normal

test that any doctor can do, and all were covered bye insurance.

Hope this helps,

Ron

________________________________________________________________________

Message: 2

Date: Tue, 30 Aug 2005 19:33:31 -0700

From: " Du Pre "

Subject: Fatigue & Fibromyalgia Center

Hello,

I was wondering if the guy that went to the Fatigue & Fibromyalgia Center

could give an updated report. They support group leader here in Sacramento

wanted to share some information at the support group meeting this Sunday

afternoon.

Thanks,

Du Pre

Website: http://www.angelfire.com/poetry/soareagle/index.html

" By words the mind is winged. " Aristophanes

[Guest guest]

Sounds like they know what they are doing. It's great to know there's someplace

people can go where they get it. Did they test you for mercury? Anything

involving mold?

Doris

----- Original Message -----

The Fatigue & Fibromyalgia center called Monday for the phone consult.

There was 26 pages of test results. And we went though them one bye one.

I had 18 abnormal tests.

A lot of the typical virus I see others talking about. Epstein-barr etc.

I was way off on 3 on of the test. Thyroid Perroxidase AB 82 (normal = >35)

Rnase - Activity 20 (normal =

1 -10%)

NK Cell activity 6.10 (normal

= 20-50)

They added NK-Stem, and something for the thyroid, (I can't spell it but is

cheap about $20.) to the other 8 items they want me to take.

(CoQ10, ENADA, FM relief, NT factor, Super Multiple (probably vitamins),

ProBoost, Enzyme Rx, Rest & Restore. )

The plan is to get stronger for about 4 more weeks they start with the

anti-biotics.

[Guest guest]

I sincerely hope Ron improves. But don't bet the house on this

Medical Group. I got a call from the nurse at their Torrance location

last Friday following up on a request that I made of them 4 months ago

telling me that she just got it that week. When I asked her to look

at the date of the letter and postmark, she had not idea where the

envelope was.

As to their theories, they had no knowledge of Cheney's new findings

on heart failure. The nurse wanted Cheney's telephone number and I

told her Dr. Holtorf already had it and if not he could call me

personally. Needless to say I haven't heard from Dr. Holtorf or his

nurse.

Not only does this group make money from their consultations, but they

also sell you the supplements you need. Only their compounding

pharmacies can make up the thryoid medication they use and their

supplments are far superior...

Finally, no legitimate doctor has claimed any fame to have cured 1000s

of patients and I can assure you that if they were able to cure 3000

patients with chronic fatigue or fibromyalgia, none of us would still

be sick. Even Cheney, one of the best has not claimed he has cured

anyone... But this group has cured 3000 just this year alone. Mighty

impressive, considering all the members on this list - how many of us

have left the list saying we have recovered?

I, just as you, are looking for the help. Beware of any organization

that makes statements that make you wonder. I certainly hope I wasn't

on their cure or recovery list. The only thing they helped out a lot

with me in the long run, was thinning my wallet.

> Sounds like they know what they are doing. It's great to know

there's someplace people can go where they get it. Did they test you

for mercury? Anything involving mold?

>

> Doris

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

> The Fatigue & Fibromyalgia center called Monday for the phone

consult.

> There was 26 pages of test results. And we went though them one

bye one.

>

> I had 18 abnormal tests.

> A lot of the typical virus I see others talking about.

Epstein-barr etc.

>

> I was way off on 3 on of the test. Thyroid Perroxidase AB 82

(normal = >35)

> Rnase - Activity

20 (normal = 1 -10%)

> NK Cell activity

6.10 (normal = 20-50)

>

>

> They added NK-Stem, and something for the thyroid, (I can't spell

it but is cheap about $20.) to the other 8 items they want me to take.

>

> (CoQ10, ENADA, FM relief, NT factor, Super Multiple (probably

vitamins), ProBoost, Enzyme Rx, Rest & Restore. )

>

> The plan is to get stronger for about 4 more weeks they start with

the anti-biotics.

>

>

[Guest guest]

Ron,

I live in the Kansas City area and I have had CFS for 14 years. I

have been on disability since " 98 " . I can understand your

frustration, but don't see that your complaints will help individuals

decide whether to give FFC a try. It looks like they are guilty of

administrative failures, but that will hold true for nearly any

medical office. Yes, they are trying to make a profit, but the

practice of medicne is a profit making endeavor. They charge $995

for four hour long office visits, which is less than doctors usually

charge.(Time your next Dr. visit then do the math). They use Quest

Diagnostics for testing to gain as much insurance coverage as

possible. My supplements cost around $200 per month. The doctor told

me they would try to reduce the use of supplements over time. It does

not seem unreasonable to me.

I decided to give them a go after looking into it for a long

period of time. Like many of you I have chased down different ideas

and protocols. Fortunately some have helped, but most have not. I

visited the Dallas Clinic last week. I really feel there are some

strong positives. They consolidate into one place and one program a

great array of methods and testing. It would take me years to find

physicians to perform these tests and follow up on them. Even if I

could accomplish this on my own, treatments from several doctors

would not be coordinated and it is difficult to know what works and

what doesn't.

I think their methods are preferrable to the alternatives.

Either go at it peicemeal, or pay the mega-specialists exhorbitant

fees for one extreme visit with little follow up.

A look at their website shows they do not claim a high cure

rate. They do claim that 90% of patients improve. In fact they

advise to be careful of physicians who claim they can cure the

disease.

The doctor I saw did not make a big deal out of the initial

round of supplements or insist that they be purchased from them. I

probably will look on the interenet to buy them cheaper if I can, but

I want to give their program a real chance. If their program does

not help me get better, so be it. I will still be satified because I

will have the benefit of comprehensive testing and an answer to many

questions. This will allow me to narrow things down as I continue to

fight the disease.

Dan

> > Sounds like they know what they are doing. It's great to know

> there's someplace people can go where they get it. Did they test

you

> for mercury? Anything involving mold?

> >

> > Doris

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

> > The Fatigue & Fibromyalgia center called Monday for the phone

> consult.

> > There was 26 pages of test results. And we went though them one

> bye one.

> >

> > I had 18 abnormal tests.

> > A lot of the typical virus I see others talking about.

> Epstein-barr etc.

> >

> > I was way off on 3 on of the test. Thyroid Perroxidase AB 82

> (normal = >35)

> > Rnase - Activity

> 20 (normal = 1 -10%)

> > NK Cell activity

> 6.10 (normal = 20-50)

> >

> >

> > They added NK-Stem, and something for the thyroid, (I can't

spell

> it but is cheap about $20.) to the other 8 items they want me to

take.

> >

> > (CoQ10, ENADA, FM relief, NT factor, Super Multiple (probably

> vitamins), ProBoost, Enzyme Rx, Rest & Restore. )

> >

> > The plan is to get stronger for about 4 more weeks they start

with

> the anti-biotics.

> >

> >

[Guest guest]

I agree Dan. is extremely bitter about his experience,

throwing blame here and there, and making false statements

about the centers.

, please give us a link where they specifically say how

many people they have CURED. I heard their talk here in Seattle,

and they made a point to say they cannot cure anyone, but they

do have a high rate of patients who improve over time.

As for not knowing of Cheney's latest theories, remember, it is a

theory, nothing else. Dr. Cheney is an extremely admirable man,

a champion for our cause, but he is not God. He is only human,

and got so sick himself that he needed a heart transplant to

regain his health.

d2

> > > Sounds like they know what they are doing. It's great to

know

> > there's someplace people can go where they get it. Did they

test

> you

> > for mercury? Anything involving mold?

> > >

> > > Doris

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

> > > The Fatigue & Fibromyalgia center called Monday for the

phone

> > consult.

> > > There was 26 pages of test results. And we went though

them one

> > bye one.

> > >

> > > I had 18 abnormal tests.

> > > A lot of the typical virus I see others talking about.

> > Epstein-barr etc.

> > >

> > > I was way off on 3 on of the test. Thyroid Perroxidase AB

82

> > (normal = >35)

> > > Rnase - Activity

> > 20 (normal = 1 -10%)

> > > NK Cell activity

> > 6.10 (normal = 20-50)

> > >

> > >

> > > They added NK-Stem, and something for the thyroid, (I

can't

> spell

> > it but is cheap about $20.) to the other 8 items they want me

to

> take.

> > >

> > > (CoQ10, ENADA, FM relief, NT factor, Super Multiple

(probably

> > vitamins), ProBoost, Enzyme Rx, Rest & Restore. )

> > >

> > > The plan is to get stronger for about 4 more weeks they

start

> with

> > the anti-biotics.

> > >

> > >

[Guest guest]

I have had a very positive experience with the Fibro

and Fatigue center in Cenntenial, Colorado. Dr. LaBair

knows that she doesn't know everything and is very

open to learning from her patients and elsewhere. Her

office staff is very efficient and friendly.

bb

<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

--- kdrbrill <kdrbrill@...> wrote:

> I agree Dan. is extremely bitter about his

> experience,

> throwing blame here and there, and making false

> statements

> about the centers.

>

> , please give us a link where they specifically

> say how

> many people they have CURED. I heard their talk

> here in Seattle,

> and they made a point to say they cannot cure

> anyone, but they

> do have a high rate of patients who improve over

> time.

>

> As for not knowing of Cheney's latest theories,

> remember, it is a

> theory, nothing else. Dr. Cheney is an extremely

> admirable man,

> a champion for our cause, but he is not God. He is

> only human,

> and got so sick himself that he needed a heart

> transplant to

> regain his health.

>

> d2

>

>

>

>

> > > I sincerely hope Ron improves. But don't bet

> the house on

> this

> > > Medical Group. I got a call from the nurse at

> their Torrance

> > location

> > > last Friday following up on a request that I

> made of them 4

> months

> > ago

> > > telling me that she just got it that week. When

> I asked her to

> look

> > > at the date of the letter and postmark, she had

> not idea

> where the

> > > envelope was.

> > >

> > > As to their theories, they had no knowledge of

> Cheney's new

> findings

> > > on heart failure. The nurse wanted Cheney's

> telephone

> number and I

> > > told her Dr. Holtorf already had it and if not

> he could call me

> > > personally. Needless to say I haven't heard

> from Dr. Holtorf

> or his

> > > nurse.

> > >

> > > Not only does this group make money from their

> consultations, but

> > they

> > > also sell you the supplements you need. Only

> their

> compounding

> > > pharmacies can make up the thryoid medication

> they use

> and their

> > > supplments are far superior...

> > >

> > > Finally, no legitimate doctor has claimed any

> fame to have

> cured

> > 1000s

> > > of patients and I can assure you that if they

> were able to cure

> 3000

> > > patients with chronic fatigue or fibromyalgia,

> none of us

> would

> > still

> > > be sick. Even Cheney, one of the best has not

> claimed he

> has cured

> > > anyone... But this group has cured 3000 just

> this year alone.

> > Mighty

> > > impressive, considering all the members on this

> list - how

> many of

> > us

> > > have left the list saying we have recovered?

> > >

> > > I, just as you, are looking for the help.

> Beware of any

> > organization

> > > that makes statements that make you wonder. I

> certainly

> hope I

> > wasn't

>

=== message truncated ===

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

has a right to his own opinions. After asking many questions

about the FFC center here in Dallas, I came to the conclusion that

they were in in Fibromyalgia/CFS business mainly for the money-

to take advantage of the patients who could afford their office

visits, tests and 'treatments'. Not knowing about Cheney's latest

theories is a dead giveaway that CFS is not their specialty. That

being said, the FFC centers *may* be the best option that some

PWCs in certain locations have. Additionally, if they have to

learn from there patients about CFS, maybe they should pay the

people who decide to go there.

Mike C.

> I agree Dan. is extremely bitter about his experience,

> throwing blame here and there, and making false statements

> about the centers.

>

> , please give us a link where they specifically say how

> many people they have CURED. I heard their talk here in Seattle,

> and they made a point to say they cannot cure anyone, but they

> do have a high rate of patients who improve over time.

>

> As for not knowing of Cheney's latest theories, remember, it is a

> theory, nothing else. Dr. Cheney is an extremely admirable man,

> a champion for our cause, but he is not God. He is only human,

> and got so sick himself that he needed a heart transplant to

> regain his health.

>

> d2

]

[Guest guest]

Not knowing about Cheney's theories is one things, but come on, his latest

theories on the heart have been out for about a month, and it's not like he

makes any attempt to publish them.

How many people have had a doctor who did this much comprehensive testing and

who looked at so many things that are right on? It sure sounds like a better

bet to send someone there to try to figure out how to get better than any other

place I've seen.

doris

----- Original Message -----

Not knowing about Cheney's latest

theories is a dead giveaway that CFS is not their specialty.