Fibromyalgia and Fatigue centers

[Guest guest]

I heard about the FFC's a few months back and was quite

excited, as they were planning on opening a Seattle office by the

end of this year. Now I see no mention of Seattle. Not that I

could afford it anyway -- I'm sure most of their treatments aren't

covered by insurance. So many of the tests and drugs or

supplements we need are considered " experimental " and not

covered. And I doubt they accept Medicaid.

They do sound like they have a quite thorough 6-step approach,

which seems to fit with many current treatment protocols, so I do

wish I could see them.

The only thing that I find troubling is their claim that of the over

" 3,500 patients in over 5 years, Holtorf's success rate is

outstanding. He estimates that over 85% of his patients have

more than 80% improvement in pain and energy levels within the

first six - eight months of treatment and most eventually achieve

complete resolution of the symptoms. "

Then why are there only THREE testimonials on their website,

and two of them are those of the FOUNDERS of the clinics?!

I wrote to them months ago asking this question. No reply.

>

> I just ran across a discussion on the Immunesupport.com

> message board. There are two ladies and their children who

> have been to the Center in Cleveland, and are getting positive

> results so far.

>

> Has anyone been to one of these centers and if so, what kind

of

> results have you gotten?

>

>

http://www.fibroandfatigue.com/fibromyalgia_fatique_center.htm

>

> They started opening up across the country about a year ago;

> there are now 7 centers with plans for about 30 by the end of

> 2006.

>

> It was started by Dr. Kent Holtorf.

[Guest guest]

As it just so happens, I saw Dr. Larry Sharp, who is part of the Dallas

center, this past September,while he was still in Fort Worth. As to results,

well, that's a complicated story. (And long.)

First, I had a very lengthy (and expensive) examination by him. For

starters, he said that I had some nerve damage that was impacting my feet

and legs, and some other evidence of neurological damage. We discussed how I

had been examined by a neurologist 6 years ago for possible multiple

sclerosis, and the neurologist after a not very thorough examination decided

I didn't have multiple sclerosis. But Dr. Sharp said that in his assessment,

he didn't think it had been ruled out in my case, and I very definitely had

some specific symptoms that were specific for multiple sclerosis. He said

that if I don't have improvement, down the road he'd like to do some more

evaluation with that in mind.

I've also been diagnosed with Lyme by Dr. Sharp with a positive IGenex

Western Blot on both IgM and IgG. Diagnosed for the second time, but this is

the first time I've actually been tested. The first was with Dr. Shoemaker,

a year and a half earlier. I had requested Lyme testing by Dr. Shoemaker,

but he insisted it wasn't accurate, and so refused. But I did test positive

on his genotyping as a type that he claims he only sees in people with

long-term Lyme, and he diagnosed me based on two bulls eye rashes that I

reported, and an extensive tick bite history. The positive Western Blot

test result is after some Lyme treatments that I've done over the last year

and a half; a 3 week course of doxycycline that Dr. Shoemaker allowed me to

do, followed by two and a half months of cholestyramine and being told by

Dr. Shoemaker that I couldn't possibly still be infected with Lyme, so my

problem must be permanently damaged MSH pathways in my brain, and then 10

months of Samento that I did on my own, and then a short course of cipro and

then ceftin. And I still tested positive even on the IgM part of the test,

with bands that definitely positive and very specific to Lyme.

I was also diagnosed with Hashimoto's by Dr. Sharp. (Interesting

coincidence, in light of the report by Rich on Dr. Hyde's talk at the CFS

meeting in Madison last month.) I've been asking doctors to run more

complete thyroid panels FOR YEARS, and they always ignore me. In the past,

they've only run TSH, T4 and free T3, and pronounce me fine. And those

levels were fine this time, too. But Dr. Sharp also ran reverse T3 (which

was very high) and antithyroglobulin antibodies, which was also very high. I

definitely have Thyroid problems. But the low TSH is because of hypothalamus

problems, and the normal ranges of T4 and free T3 don't say anything,

either.

Dr. Sharp also diagnosed me with blood hypercoagulation problems. He said I

had the worst kind, whatever that means. He thinks I've had it for many

years, and that I have significant microcirculation damage. This, after I

saw Dr. ph Brewer in Kansas City two years ago, and he claimed I didn't

have a problem with hypercoagulation, in spite of the fact that I'd had

ruptured blood vessels in my hands and feet on many occasions, just out of

the blue, from no apparent cause at all. I could feel it coming on, and

watch it happen. But in spite of the fact that I went to Dr. Brewer

specifically because he was involved in the research on the ISAAC panel, and

I thought he'd be most open to ordering an ISAAC panel on me, and in spite

of the fact that I specifically requested it, he didn't order it. He said he

was going to order it, and then the lab didn't draw the blood for it. They

claimed they didn't draw it because it wasn't covered by our insurance. But

we were prepared to pay out of pocket, and they never even asked us. (I also

asked for pathogen testing, but that wasn't done, either.) And after I tried

to convince my own doctor that the ruptured blood vessels in my left hand

that left half my hand black and a loss of feeling in the outer part of my

hand that he thought was somehow from some damage I accidentally caused by

jamming my fingers somehow, but I knew it just happened out of the blue, and

I watched it happen, about 30 minutes after having blood drawn. (You know,

I'm glad I didn't have to say that out loud. If that wasn't a run-on

sentence, I don't know what is!)

I have the worst luck convincing doctors to run tests, and prescribe things!

They all look at me like I'm some sort of hypochondriac, or self-mutilator

or junky trying to ask for drugs or something. In spite of the fact that I

generally AVOID prescription medications, and I've been certified sane by my

therapist. I HATE DOCTORS!

And I can't say that my experience with Dr. Sharp has been tremendously

better. But at least I've made some progress with him. (And he has the most

congenial bedside manner I've seen in ANY doctor) We went over all the

possible options for treating me. He prefers to do naturopathic, when

possible, but I've tried everything naturopathic that he had to recommend.

So finally he agreed to do what I wanted to do, all along. I think if I

hadn't already tried so many things, he wouldn't have been willing to try my

suggestion.

The reason I went to see Dr. Sharp is that I'm interested in trying the

Marshall Protocol. So we also tested my 25 D and 1,25 D. And my 1,25 D was

elevated above the lab normal ranges, and my 25 D was on the low end of the

lab normal ranges, giving me a ratio of about 3.3. And that was after 6

weeks of avoidance of all vitamin D foods, and trying to avoid sun. So I

definitely have Th1 inflammation. It's been two months since I had those

tests done, so hopefully it will have dropped further by now, because I've

religiously been avoiding foods with D in them, and trying to perfect my sun

avoidance skills.

I had to wait 6 weeks to get my test results back, because Dr. Sharp was in

the process of moving his office from Fort Worth to Dallas. And they lost

some of my records. I still don't have copies of all the lab reports. And

the only way we got the ones that we did get was that my husband called

their office every day for a week. And finally they faxed part of it to us.

But the faxes are such poor quality that I can't photo copy them, and get

readable copies. They're barely readable. And they're missing pages of parts

of the reports.

I had to have a comprehensive metabolic panel done locally, because it

wasn't drawn for some reason while I was down in Fort Worth, so I just got

the results of that back two days ago. Those test results were basically

normal, except my albumin and globulin were not the appropriate ratio. My

globulin is higher than the ratio should be, probably because I've had

chronic infections. But supposedly I should be ready to start the MP by now,

except that I'm having to wait on some other things.

I've been waiting for an eternity for NoIR glasses! I got one pair (for

outdoor use - it took almost a month, even though I ordered it and requested

that it be delivered second day. It was delivered ground, by mistake.), and

I've been told that they won't be working on the other pairs till the end of

November. And then it will be several weeks before I get them after that! So

I'm still depending on my other sunglasses for indoor use for now. I hope

that I at least get them by the time I'm ready to start minocycline.

I'm also still waiting on the pharmacy to fill my prescription for Benicar.

They filled 30 tablets, and gave me a note saying they would mail me the

remainder the following day. But they told my husband that they were going

to have to check into the prescription, because they questioned the

quantity. It's been more than a week, and I'm still waiting for the Benicar,

(which would only be 1 day by mail) so I'm assuming that there's been a

hold-up with that which we're going to have to have straightened out. I

can't have them hassling me every time I get it filled. Dr. Sharp at least

wrote it for enough that I can take it as frequently as required, but he

only wrote it for 5 months worth. So I suppose he wants to see how I do on

it. But I think it is a little optimistic to assume that I'll be doing

better in 5 months, considering how drastic my 1 25 D levels were, and how

long I've been sick. And if I have to argue with the pharmacy every time I

get it filled, I'm going to scream! The last thing I want is delays every

time I need it refilled.

In the mean time, Dr. Sharp wanted me to try using several different things,

and I've had horrendous reactions to all of them, except one, which was

something that I'd been taking already, but he recommended a different

brand.

He wanted me to do the oxygen/rebreathing thing. Unfortunately, the company

that we ordered the oxygen from at first refused to file with our insurance,

because they thought Dr. Sharp wasn't a legitimate doctor, (he is, the guy

at the company is a jerk) and then when they finally submitted it, Insurance

came back and demanded more information from my LOCAL doctor, who doesn't

have a clue about what I'm doing, because I haven't asked him, or told him

anything, since seeing Dr. Sharp, except when I went in and spent all of 30

seconds asking for him to run the comprehensive metabolic panel that Dr.

Sharp hadn't done. The oxygen company guy somehow told the insurance company

to request the information from our local doctor, instead of from Dr. Sharp.

So now we have to get that straightened out. And I didn't tolerate the

rebreathing, anyway. I'm not surprised that I herxed on it. But the herxing

kept getting more and more severe, and lasting longer and longer, and

started driving me downhill, and has flared up my inflammation problems

horribly, even after having stopped it for several weeks. I think that it is

causing damage along with the herx, and I simply don't have sufficient

growth hormone to repair the damage. Or else it is driving the Lyme deeper

into brain and joints, or something. Either way, it got to the point that

even after days of not using it, I'd go back and try it again, and have an

even bigger negative reaction, and find myself two steps lower in function

that I can't seem to regain even after days of not doing it. So I finally

decided that maybe in conjunction with antibiotic therapy, or Benicar or

something, it might be more tolerable, but on it's own I think I am just

causing more damage.

At the least, when I went down to Fort Worth, I was already pretty much

following the protocol that Dr. Sharp normally prescribes, and had been for

years. And it hasn't done me any good. I'm not sure what that says about

having someone else see him, because my problems are unique, and without a

doubt I DON'T have just CFS. I've been sick for more than 29 years, and

although for years I only had CFS symptoms, over the last 5 I've had

progressively more non-CFS symptoms.

I think my problem is that I have Lyme, and it wasn't suspected until I saw

Dr. Shoemaker, and wasn't adequately treated by him. So I have a pretty

tough infection to deal with that's had more than a quarter century to dig

in and has resisted all the short courses of antibiotics that I've done over

the years. Dr. Shoemaker refused to put me on long-term antibiotics, and

even Dr. Sharp has real quelms about long-term antibiotic use. But he at

least is open to the low dose pulsing done on the Marshall Protocol. He has

a few patients on it, but I think he's very hesitant to put anyone on it at

this point in time, unless they definitely have Lyme, or autoimmune

disorders, because of it's experimental nature. And I don't think he would

have been willing to try it with me, except that I'd already tried so many

other things. So I don't want to be encouraging everyone whose interested in

the Marshall Protocol to go running to Dr. Sharp. It might be faster and

easier to see someone else.

So that's where I currently am, 2 months after seeing Dr. Sharp. Still not

having started the protocol that I went down there to do. The funny thing is

that I became convinced almost 6 months ago that I was a good candidate for

the Marshall Protocol, and it's taken me this long to try to get all the

ducks in a row to start it. I know that some people are able to make an

appointment, walk into their doctors office several days later with a stack

of papers from the sarcinfo web site, and walk out with Benicar prescription

in hand, go straight to the pharmacy, and have it filled the same day. But

it's been considerably more complicated for me.

Once I get the full Benicar prescription, then I have to worry about how

long it's going to take for me to get the minocycline prescription! And I

also have to deal with all the major life-style changes that this

necessitates, and the herxing, and any other complications that come up.

Either way, this is not a short term solution, and it's not going to be

easy. And right now, I'm so sick of having to fight constantly. (Okay, it's

almost 2 a.m., and I have a headache, and I've had a very bad week, and so

I'm probably more crabby than usual. You can tell I'm crashing physically,

because a) I ramble, and I post at all, because usually I have the common

sense to just keep my mouth shut so that I can stay out of the Lime Lite

(should that be a pun in my case?) and not be battered by people who have

some fanatical health belief, or someone who just has an ax to grind with

anyone that they can pick on.

lindaj@...

Fibromyalgia and Fatigue Centers

>

>

> I just ran across a discussion on the Immunesupport.com

> message board. There are two ladies and their children who

> have been to the Center in Cleveland, and are getting positive

> results so far.

>

> Has anyone been to one of these centers and if so, what kind of

> results have you gotten?

>

> http://www.fibroandfatigue.com/fibromyalgia_fatique_center.htm

>

> They started opening up across the country about a year ago;

> there are now 7 centers with plans for about 30 by the end of

> 2006.

>

> It was started by Dr. Kent Holtorf.

[Guest guest]

My god , what an ordeal you've been through.

As I mentioned earlier, I've never heard a good outcome from

Shoemaker.

I wonder if the Fatigue and Fibro Centers would like to post your

testimonial!? In fairness to Dr. Sharp, it sounds like he's just

getting started on the learning curve, but hopefully he will get you

on some protocol, Marshall or whatever (has he at least given

you something for the hypercoagulation or the damaged blood

vessels -- like bioflavonoids, quercetin?).

Hope things come together for you very soon. You're a true

survivor!

d.

> As it just so happens, I saw Dr. Larry Sharp, who is part of the

Dallas

> center, this past September,while he was still in Fort Worth. As

to results,

> well, that's a complicated story. (And long.)

>

> First, I had a very lengthy (and expensive) examination by him.

For

> starters, he said that I had some nerve damage that was

impacting my feet

> and legs, and some other evidence of neurological damage.

We discussed how I

> had been examined by a neurologist 6 years ago for possible

multiple

> sclerosis, and the neurologist after a not very thorough

examination decided

> I didn't have multiple sclerosis. But Dr. Sharp said that in his

assessment,

> he didn't think it had been ruled out in my case, and I very

definitely had

> some specific symptoms that were specific for multiple

sclerosis. He said

> that if I don't have improvement, down the road he'd like to do

some more

> evaluation with that in mind.

>

> I've also been diagnosed with Lyme by Dr. Sharp with a

positive IGenex

> Western Blot on both IgM and IgG. Diagnosed for the second

time, but this is

> the first time I've actually been tested. The first was with Dr.

Shoemaker,

> a year and a half earlier. I had requested Lyme testing by Dr.

Shoemaker,

> but he insisted it wasn't accurate, and so refused. But I did test

positive

> on his genotyping as a type that he claims he only sees in

people with

> long-term Lyme, and he diagnosed me based on two bulls eye

rashes that I

> reported, and an extensive tick bite history. The positive

Western Blot

> test result is after some Lyme treatments that I've done over

the last year

> and a half; a 3 week course of doxycycline that Dr. Shoemaker

allowed me to

> do, followed by two and a half months of cholestyramine and

being told by

> Dr. Shoemaker that I couldn't possibly still be infected with

Lyme, so my

> problem must be permanently damaged MSH pathways in my

brain, and then 10

> months of Samento that I did on my own, and then a short

course of cipro and

> then ceftin. And I still tested positive even on the IgM part of the

test,

> with bands that definitely positive and very specific to Lyme.

>

> I was also diagnosed with Hashimoto's by Dr. Sharp.

(Interesting

> coincidence, in light of the report by Rich on Dr. Hyde's talk at

the CFS

> meeting in Madison last month.) I've been asking doctors to

run more

> complete thyroid panels FOR YEARS, and they always ignore

me. In the past,

> they've only run TSH, T4 and free T3, and pronounce me fine.

And those

> levels were fine this time, too. But Dr. Sharp also ran reverse

T3 (which

> was very high) and antithyroglobulin antibodies, which was

also very high. I

> definitely have Thyroid problems. But the low TSH is because

of hypothalamus

> problems, and the normal ranges of T4 and free T3 don't say

anything,

> either.

>

> Dr. Sharp also diagnosed me with blood hypercoagulation

problems. He said I

> had the worst kind, whatever that means. He thinks I've had it

for many

> years, and that I have significant microcirculation damage.

This, after I

> saw Dr. ph Brewer in Kansas City two years ago, and he

claimed I didn't

> have a problem with hypercoagulation, in spite of the fact that

I'd had

> ruptured blood vessels in my hands and feet on many

occasions, just out of

> the blue, from no apparent cause at all. I could feel it coming

on, and

> watch it happen. But in spite of the fact that I went to Dr. Brewer

> specifically because he was involved in the research on the

ISAAC panel, and

> I thought he'd be most open to ordering an ISAAC panel on me,

and in spite

> of the fact that I specifically requested it, he didn't order it. He

said he

> was going to order it, and then the lab didn't draw the blood for

it. They

> claimed they didn't draw it because it wasn't covered by our

insurance. But

> we were prepared to pay out of pocket, and they never even

asked us. (I also

> asked for pathogen testing, but that wasn't done, either.) And

after I tried

> to convince my own doctor that the ruptured blood vessels in

my left hand

> that left half my hand black and a loss of feeling in the outer

part of my

> hand that he thought was somehow from some damage I

accidentally caused by

> jamming my fingers somehow, but I knew it just happened out

of the blue, and

> I watched it happen, about 30 minutes after having blood

drawn. (You know,

> I'm glad I didn't have to say that out loud. If that wasn't a run-on

> sentence, I don't know what is!)

>

> I have the worst luck convincing doctors to run tests, and

prescribe things!

> They all look at me like I'm some sort of hypochondriac, or

self-mutilator

> or junky trying to ask for drugs or something. In spite of the fact

that I

> generally AVOID prescription medications, and I've been

certified sane by my

> therapist. I HATE DOCTORS!

>

> And I can't say that my experience with Dr. Sharp has been

tremendously

> better. But at least I've made some progress with him. (And he

has the most

> congenial bedside manner I've seen in ANY doctor) We went

over all the

> possible options for treating me. He prefers to do naturopathic,

when

> possible, but I've tried everything naturopathic that he had to

recommend.

> So finally he agreed to do what I wanted to do, all along. I think

if I

> hadn't already tried so many things, he wouldn't have been

willing to try my

> suggestion.

>

> The reason I went to see Dr. Sharp is that I'm interested in

trying the

> Marshall Protocol. So we also tested my 25 D and 1,25 D. And

my 1,25 D was

> elevated above the lab normal ranges, and my 25 D was on

the low end of the

> lab normal ranges, giving me a ratio of about 3.3. And that was

after 6

> weeks of avoidance of all vitamin D foods, and trying to avoid

sun. So I

> definitely have Th1 inflammation. It's been two months since I

had those

> tests done, so hopefully it will have dropped further by now,

because I've

> religiously been avoiding foods with D in them, and trying to

perfect my sun

> avoidance skills.

>

> I had to wait 6 weeks to get my test results back, because Dr.

Sharp was in

> the process of moving his office from Fort Worth to Dallas. And

they lost

> some of my records. I still don't have copies of all the lab

reports. And

> the only way we got the ones that we did get was that my

husband called

> their office every day for a week. And finally they faxed part of it

to us.

> But the faxes are such poor quality that I can't photo copy them,

and get

> readable copies. They're barely readable. And they're missing

pages of parts

> of the reports.

>

> I had to have a comprehensive metabolic panel done locally,

because it

> wasn't drawn for some reason while I was down in Fort Worth,

so I just got

> the results of that back two days ago. Those test results were

basically

> normal, except my albumin and globulin were not the

appropriate ratio. My

> globulin is higher than the ratio should be, probably because

I've had

> chronic infections. But supposedly I should be ready to start

the MP by now,

> except that I'm having to wait on some other things.

>

> I've been waiting for an eternity for NoIR glasses! I got one pair

(for

> outdoor use - it took almost a month, even though I ordered it

and requested

> that it be delivered second day. It was delivered ground, by

mistake.), and

> I've been told that they won't be working on the other pairs till

the end of

> November. And then it will be several weeks before I get them

after that! So

> I'm still depending on my other sunglasses for indoor use for

now. I hope

> that I at least get them by the time I'm ready to start

minocycline.

>

> I'm also still waiting on the pharmacy to fill my prescription for

Benicar.

> They filled 30 tablets, and gave me a note saying they would

mail me the

> remainder the following day. But they told my husband that they

were going

> to have to check into the prescription, because they questioned

the

> quantity. It's been more than a week, and I'm still waiting for the

Benicar,

> (which would only be 1 day by mail) so I'm assuming that

there's been a

> hold-up with that which we're going to have to have

straightened out. I

> can't have them hassling me every time I get it filled. Dr. Sharp

at least

> wrote it for enough that I can take it as frequently as required,

but he

> only wrote it for 5 months worth. So I suppose he wants to see

how I do on

> it. But I think it is a little optimistic to assume that I'll be doing

> better in 5 months, considering how drastic my 1 25 D levels

were, and how

> long I've been sick. And if I have to argue with the pharmacy

every time I

> get it filled, I'm going to scream! The last thing I want is delays

every

> time I need it refilled.

>

> In the mean time, Dr. Sharp wanted me to try using several

different things,

> and I've had horrendous reactions to all of them, except one,

which was

> something that I'd been taking already, but he recommended a

different

> brand.

>

> He wanted me to do the oxygen/rebreathing thing.

Unfortunately, the company

> that we ordered the oxygen from at first refused to file with our

insurance,

> because they thought Dr. Sharp wasn't a legitimate doctor, (he

is, the guy

> at the company is a jerk) and then when they finally submitted

it, Insurance

> came back and demanded more information from my LOCAL

doctor, who doesn't

> have a clue about what I'm doing, because I haven't asked him,

or told him

> anything, since seeing Dr. Sharp, except when I went in and

spent all of 30

> seconds asking for him to run the comprehensive metabolic

panel that Dr.

> Sharp hadn't done. The oxygen company guy somehow told

the insurance company

> to request the information from our local doctor, instead of from

Dr. Sharp.

> So now we have to get that straightened out. And I didn't

tolerate the

> rebreathing, anyway. I'm not surprised that I herxed on it. But

the herxing

> kept getting more and more severe, and lasting longer and

longer, and

> started driving me downhill, and has flared up my inflammation

problems

> horribly, even after having stopped it for several weeks. I think

that it is

> causing damage along with the herx, and I simply don't have

sufficient

> growth hormone to repair the damage. Or else it is driving the

Lyme deeper

> into brain and joints, or something. Either way, it got to the

point that

> even after days of not using it, I'd go back and try it again, and

have an

> even bigger negative reaction, and find myself two steps lower

in function

> that I can't seem to regain even after days of not doing it. So I

finally

> decided that maybe in conjunction with antibiotic therapy, or

Benicar or

> something, it might be more tolerable, but on it's own I think I

am just

> causing more damage.

>

> At the least, when I went down to Fort Worth, I was already

pretty much

> following the protocol that Dr. Sharp normally prescribes, and

had been for

> years. And it hasn't done me any good. I'm not sure what that

says about

> having someone else see him, because my problems are

unique, and without a

> doubt I DON'T have just CFS. I've been sick for more than 29

years, and

> although for years I only had CFS symptoms, over the last 5 I've

had

> progressively more non-CFS symptoms.

>

> I think my problem is that I have Lyme, and it wasn't suspected

until I saw

> Dr. Shoemaker, and wasn't adequately treated by him. So I

have a pretty

> tough infection to deal with that's had more than a quarter

century to dig

> in and has resisted all the short courses of antibiotics that I've

done over

> the years. Dr. Shoemaker refused to put me on long-term

antibiotics, and

> even Dr. Sharp has real quelms about long-term antibiotic use.

But he at

> least is open to the low dose pulsing done on the Marshall

Protocol. He has

> a few patients on it, but I think he's very hesitant to put anyone

on it at

> this point in time, unless they definitely have Lyme, or

autoimmune

> disorders, because of it's experimental nature. And I don't think

he would

> have been willing to try it with me, except that I'd already tried

so many

> other things. So I don't want to be encouraging everyone

whose interested in

> the Marshall Protocol to go running to Dr. Sharp. It might be

faster and

> easier to see someone else.

>

> So that's where I currently am, 2 months after seeing Dr.

Sharp. Still not

> having started the protocol that I went down there to do. The

funny thing is

> that I became convinced almost 6 months ago that I was a

good candidate for

> the Marshall Protocol, and it's taken me this long to try to get all

the

> ducks in a row to start it. I know that some people are able to

make an

> appointment, walk into their doctors office several days later

with a stack

> of papers from the sarcinfo web site, and walk out with Benicar

prescription

> in hand, go straight to the pharmacy, and have it filled the

same day. But

> it's been considerably more complicated for me.

>

> Once I get the full Benicar prescription, then I have to worry

about how

> long it's going to take for me to get the minocycline

prescription! And I

> also have to deal with all the major life-style changes that this

> necessitates, and the herxing, and any other complications

that come up.

> Either way, this is not a short term solution, and it's not going to

be

> easy. And right now, I'm so sick of having to fight constantly.

(Okay, it's

> almost 2 a.m., and I have a headache, and I've had a very bad

week, and so

> I'm probably more crabby than usual. You can tell I'm crashing

physically,

> because a) I ramble, and I post at all, because usually I

have the common

> sense to just keep my mouth shut so that I can stay out of the

Lime Lite

> (should that be a pun in my case?) and not be battered by

people who have

> some fanatical health belief, or someone who just has an ax to

grind with

> anyone that they can pick on.

>

>

> lindaj@h...

>

>

> Fibromyalgia and Fatigue

Centers

>

>

> >

> >

> > I just ran across a discussion on the Immunesupport.com

> > message board. There are two ladies and their children who

> > have been to the Center in Cleveland, and are getting

positive

> > results so far.

> >

> > Has anyone been to one of these centers and if so, what kind

of

> > results have you gotten?

> >

> >

http://www.fibroandfatigue.com/fibromyalgia_fatique_center.htm

> >

> > They started opening up across the country about a year ago;

> > there are now 7 centers with plans for about 30 by the end of

> > 2006.

> >

> > It was started by Dr. Kent Holtorf.

[Guest guest]

The idea was to get me started on the Marshall Protocol, which will address

all of my problems, including the hypercoagulation problems. But it

significantly complicates things if I start on thyroid medication, or

heparin just before starting on the Marshall Protocol, because they'll

require more intense monitoring than I have available to me, and will have

to be rebalance repeatedly as my pathogen load changes. And to start both at

the same time will make for one really rocky start. So we decided my best

option was to just get started on the Marshall Protocol, and then down the

road look to see if I still need to do something to resolve the thyroid and

hypercoagulation problems. I've been living with these problems for years,

and a few more months isn't going to make a significant difference to me one

way or another. But the sooner I can start treatment with the Marshal

Protocol, the sooner I will be well, and not have these problems to have to

deal with in the first place. That's part of why I'm so frustrated with how

long this is taking to get started.

I've been taking bioflavanoids and quercetin for years. Actually, I've been

doing a lot of things for years that have probably helped reduce the

problem. For example, I've been using curcumin and bromelain for years, and

using EPA fish oil and vitamin E, which have helped, though they haven't

addressed the underlying cause of the problems. And I've been using the

right dose of selenium, which is probably why my T4 and T3 levels have been

normal. I've been closely following what's been coming from Dr. Cheney for

years, which is why I was already doing pretty much what Dr. Sharp

recommends, because he closely follows Dr.Cheney's protocol. But in my case,

it hasn't helped, because it hasn't addressed the underlying cause of my

particular problems.

lindaj@...

Re: Fibromyalgia and Fatigue Centers

>

>

> My god , what an ordeal you've been through.

>

> As I mentioned earlier, I've never heard a good outcome from

> Shoemaker.

>

> I wonder if the Fatigue and Fibro Centers would like to post your

> testimonial!? In fairness to Dr. Sharp, it sounds like he's just

> getting started on the learning curve, but hopefully he will get you

> on some protocol, Marshall or whatever (has he at least given

> you something for the hypercoagulation or the damaged blood

> vessels -- like bioflavonoids, quercetin?).

>

> Hope things come together for you very soon. You're a true

> survivor!

>

> d.

[Guest guest]

Hi (or anyone else who knows, i.e. Carol),

Are you saying that Dr. Sharpe has moved to Dallas to the FFC

center on Hillcrest Road? That center is about 2 miles from where

I live. I called them when they first opened, and although I don't

remember the conversation, they sent me some literature which I felt

was pretty much marketing stuff for CFS/FM patients. Anyway, my

first impression is that they, FFC/Sharpe are real expensive and

probably two steps or more behind Dr. Cheney. If anyone knows

anything else, please let me know, I have an open mind.

Mike C. (BTW, the FFC center in Dallas is in a very expensive part

of Dallas-house sell for $400,000 and up in that area).

> I had to wait 6 weeks to get my test results back, because Dr.

Sharp was in

> the process of moving his office from Fort Worth to Dallas.

[Guest guest]

FYI-It is my understanding that Dr. Sharpe studied with or has

collaberated with Dr. Cheney for several years, so he *should*

be closer to the upper end of the learning curve.

Mike C.

In , " kdrbrill " <kdrbrill@y...>

wrote:

>

> My god , what an ordeal you've been through.

>

> As I mentioned earlier, I've never heard a good outcome from

> Shoemaker.

>

> I wonder if the Fatigue and Fibro Centers would like to post your

> testimonial!? In fairness to Dr. Sharp, it sounds like he's just

> getting started on the learning curve, but hopefully he will get

you

> on some protocol, Marshall or whatever (has he at least given

> you something for the hypercoagulation or the damaged blood

> vessels -- like bioflavonoids, quercetin?).

>

> Hope things come together for you very soon. You're a true

> survivor!

Kent Holtorf.<<snip<<

[Guest guest]

I don't know if they're two steps behind Cheney or not, I have an

idea that they just concentrate on different areas, different

protocols -- emphasizing hormonal therapy. But you're right --

sounds like an expensive set-up that caters to the well-off.

As for Cheney, with ALL DUE RESPECT, I think while he's been

fighting hard for us, and has made major advances regarding

pathologies and treatments, he's only human, and I've heard of

some patients of his in hospice care because they didn't get well

(and perhaps got worse) while under his care. But he's only

human, and he's to be commended for his dedication to our

illness.

d.

> > I had to wait 6 weeks to get my test results back, because Dr.

> Sharp was in

> > the process of moving his office from Fort Worth to Dallas.

[Guest guest]

I started with the Fibro and Fatigue Center in Centennial, Colorado (a

suburb of Denver) in August. My friend drove me on the 750 mile trip

from Albuquerque. From then on, I have had telephone appointments.

So far, I feel very positive about it. Dr. LaBair is very compassionate

and patient. It is so nice to have doctor who can answer questions about

my CFS that I have had for years. She is also open to trying new things.

We started with glutathione/AMP, B12 shots which I do once a week. They

make me stronger. All my life I've had a sinking feeling in my chest and

it went away after the first shot. The shots are also curing my

peripheral neuropathy. The neurologist here couldn't treat the

neuropathy because he didn't know what caused it, but the glutathione is

slowly repairing the nerve damage!! In my book, that is a miracle.

My hormones are way out of balance. She said I have no sex hormones! No

wonder I have never had a libido. It will take a while, but I expect a

great improvement when they are finally balanced.

Also, I just started taking cholestyramine and already my terrible

digestive problems are improving. I have never been able to take

nutritional supplements and think this may change that.

It is expensive because insurance won't cover the appointments and

nutritional supplements. They do give you a receipt that you can submit

to your insurance company, but they probably won't pay. This because

insurance companies like to pay for ten minute appointments and the FFC

doctors and nurses spend more time with you. Your insurance may pay for

the tests, however, and possibly the prescriptions. They mostly use

compounding pharmacies, especially to get biologically identical

hormones.

I picked FFC because their protocol seemed right on to me. Time will

tell if I am right.

I'll keep you posted.

Bonnie

[Guest guest]

Just to make this a little more scientific, I went through the

immunesupport.com messages and compiled information on

14 people, who have either have already received treatment or

have appointments scheduled.

Cleveland

1. 14 year old girl - improvement - sick since age 9, often

bedridden for months, now back to school 1/2 days, first time in

6 years, rode her bike this summer first time in 6 years

2. Teenage girl - diagnosed with Lyme and has been improving

enough to participate in school extracurriculars

3. Teenage boy, sibling - diagnosed with Lyme and pneumonia,

just starting treatment, so no report.

4. Lady - often bedridden, after 2 appointments has initial

increase in energy and a string of good days, but still crashes.

5. Lady - sick for 20 years - has seen small improvements so far,

which have given her hope

Torrance / Dr. Holtorf

1. Lady has appt. scheduled

2. Lady has appt. scheduled

3. Lady has appt. scheduled

4. Lady has appt. scheduled

5. Lady has less pain

6. Lady has been getting treatment for 5 months, but no

improvment

Dallas

1. Lady has seen more energy, less pain, and relief from

depression

2. Lady has received treatment and thinks its worth it, did not

report type of improvement

Denver

1. Lady has seen improvement (she also recently posted on this

board)

Tally

Out of 14 people, 8 have seen improvement, 1 no change, 5 not

enough data

[Guest guest]

I just found out about this clinic and called them....they do bio-identical hormone replacement as part of their treatment protocol for those of us who have symptoms of chronic fatigue and fibromyalgia. This is very exciting! They call themselves the Fibromyalgia and Fatigue Centers. Here is their website and, as you can see, they have locations all around the country. http://www.fibroandfatigue.com/center_locations.phpLadies if you have not found answers to your health concerns yet, please consider seeing one of these centers for help.Patty