Re: fibromyalgia and fatigue treatment centers

[Guest guest]

Thanks, Sara.

I can see the possible benefit of the extensive blood testing to eliminate

or identify all possible problems. But I've heard some say insurance has

not re-imbursed when they (the ffc) said it would. I've heard of several

patients saying they bought hundreds of dollars of supplements only to

find out they did not help or could not tolerate them. I've heard several

say that improvement was not nearly as fast as the 3-4 months ffc says

it should be. The most disturbing was from someone who goes to the

Bellevue (seattle area) clinic. She said that the doc there did not know

how to interpret some of the blood tests!

On the other side, my chiropractor does have another patient who goes

there who found out she had- I think- malaria, and is having alot of

improvement in the pain area. I've gotta log off, so I'll end this by saying I

have not written them off just yet, need a lot of convincing (and $!) before

I will seriously consider it.

>

> I'm a patient at the FFC in LA, and have been very, very happy so far

> with my treatment. The tests are expensive, yes; but they also yield

> much of the information required to address that long list of " new

> issues " you listed:

> As for " unpleasant: " One morning of fasting, one detour from the

> doctor's office to the lab, 15 vials of blood, 10 minutes. Not

> something I'd want to do every day for fun, but it hardly ruined my

> afternoon.

>

> > That's what FFC is actually trying to do: pare things down to the

> most targeted list of tests that will deliver the most information,

> and offer a targeted range of treatments that seem to give good

> benefit to the widest range of people.

>

> My doc in LA is an endocrinologist by training. He seems to have a

> decent grasp of the biochemistry, and the stuff he's given me to try

> has, with just one exception, been right on target. I haven't dealt

> with the Seattle office (though I may be switching there in the

> coming months, since I live a whole lot closer to Seattle than LA),

> and am curious to know what you've heard about them. The doc may

be

> coming from a different background, and thus treat differently.

>

> >> I'm going to be talking soon a doctor that is a medical doc that

> >> treats

> >> fibro with standard and alternative methods, which interests me

as

> >> I've

> >> found naturopathic alone does not work for me. He seems to know

> >> about many of the things I've mentioned above, but I'm not ready

> >> to jump

> >> in just yet. I need some direction, please!

>

> I saw a doc like this -- Tim Guilford -- in the Bay Area. He gave me

> a few things that were quite helpful (NAC, a B6-mag combo, and an

> herbal hormone balancer that did wonders for a long time). But I

> didn't get the huge energy, sleep, FM, and overall healing

> breakthroughs I'm getting with FFC.

>

> Sara

>

[Guest guest]

On Jan 7, 2006, at 3:58 PM, sedanmann wrote:

> I can see the possible benefit of the extensive blood testing to

> eliminate

> or identify all possible problems.

it definitely narrows down the many possibilities, allowing you to

eliminate false leads and stay focused on the areas where *you* are

likely to make the most progress. If there's one thing I've learned

in my years mothering a dyslexic kid, it's that good, thorough

testing up front is an investment that pays off over and over.

The choice here is a stark one. You can fritter away gobstopping

amounts of money and waste years trying this, trying that, and mostly

barking up the wrong trees. Or you can find out right now, once and

for all, what's really going on -- and get directly to work today on

fixing it.

As far as I'm concerned, this is a no-brainer. Even if it's you own

money. *Especially* if it's your own money.

> But I've heard some say insurance has

> not re-imbursed when they (the ffc) said it would. I've heard of

> several

> patients saying they bought hundreds of dollars of supplements only to

> find out they did not help or could not tolerate them.

FFC doesn't seem to be operating directly in the CFS mainstream --

but they've got a protocol that seems to work for an awful lot of

people.

I was prescribed nine things at the LA FFC. Three of them worked

spectacularly well -- took me to a whole new level. Four gave me

enough of a boost that I'm continuing with them. One helped, but

caused unpleasant side effects (though I'm considering making another

run at it). The ninth one is still on the shelf, waiting for me to

try it.

That's seven out of nine hits, with the two remaining still on

" pending " status. When I consider that most of these were things I'd

never have tried on my own, I figure I've gotten my money's worth.

(As an aside: my husband has chronic IBS that really drains down his

energy, so I hauled him down there last time I went. The doctor gave

him stuff that totally cleared and repopulated his gut flora; then

started him a couple weeks ago with some hormone and other

supplements. The results, so far, are amazing. The guy I spent the

day with today is someone I haven't seen in probably five years --

happy, eager, full of strength, buzzing with good energy. So that's

two.)

> I've heard several

> say that improvement was not nearly as fast as the 3-4 months ffc says

> it should be. The most disturbing was from someone who goes to the

> Bellevue (seattle area) clinic. She said that the doc there did

> not know

> how to interpret some of the blood tests!

That last is a bit disconcerting.

Mine couldn't explain to my GP exactly why he was giving me IM

glutathione. *I* had to go online and find some of Rich's stuff,

print it out, and take it to my local doc to get his cooperation with

giving me my shots. (After my husband learned to give the shots, this

wasn't an issue anymore). Yeah, it was a bit annoying. The doctor is

a very smart guy, and I was impressed with him in general (he was a

student of Weil's), but it was surprising he didn't understand

the science behind the (very helpful) things he was doing.

It's pretty clear that my FFC doc, at least, is also wayyyy out of

the loop on a lot of the stuff we discuss here on this list. He's

just not tuned into the mainstream of CFS medicine (such as it is) at

all. Never heard of the Canadian critieria before I dropped it on his

desk; and still wasn't sure he needed to see it (though he's very

clear that the CDC criteria are bogus).

It's OK, though. I don't care about his politics, as long as he gets

results. And he does.

I'm starting to wonder how much variation there is between the

treatments offered at the various FFCs. My B12/AMP/glutathione shots

are made up at the FFC in LA; I have to have them airlifted overnight

to Canada at prices that are breathtaking. (And their shelf life is

just 4-6 weeks, so I can't stock up more than a few.) So I was

looking into getting them sent up from the Seattle offices instead,

which would be faster, easier, and cheaper.

Turns out Seattle doesn't offer the same shot. Didn't really know

what I was talking about, even. So, yeah, that suggests that they're

not offering anything close to the same treatment at their various

outposts.

Given that experience, plus the new input from you, I think I'll just

keep seeing the doc in LA.

Sara

[Guest guest]

Hi

what as supplements is he taking?

regards

Cs

[Guest guest]

Sara,

I'm glad to hear both you and your husband are having improvement. It's

really hard for me to say- about the Bellevue FFC. I've only heard from

two people who have gone there, both second hand. One had good

experience, one not. It is really not enough for me to go on. I suppose I

could just go there for the tests, and then go somewhere else for

treatment but that wouldn't make them too happy. I've been told the

patient (or the one I spoke to) did not get a copy of lab results- maybe

that's why.

The fact that people are stuck with expensive supplements because

they couldn't tolerate them is disconcerting (can't remember what they

were- I'll see if I can find the e-mail and re-send to you if you want to

p.m. your e-mail address to me) When I mentioned this to the doc, she

just said " if that happens, we try something else " . They shold look at

the patient's medical and treatment history, and see a pattern of what

type of product the patient reacts negatively too so they avoid wasting

time/resources. This is what my psychiatrist does -he knows from

looking at my history not to try me on certain meds (he's an expert in

treating people with cfs/fms)

The one thing you did not mention is the IV's. I've heard folks say they

want you to have one a week- at $115 a pop. The bellevue doctor

said " we can work around your financial limitations " . But if I don't do

IV's, then will they not want to guarantee results? Oh well, 100

messages a day here- I've got to get moving!

Sedanman

>

> > I can see the possible benefit of the extensive blood testing to

> > eliminate

> > or identify all possible problems.

>

> it definitely narrows down the many possibilities, allowing you to

> eliminate false leads and stay focused on the areas where *you* are

> likely to make the most progress. If there's one thing I've learned

> in my years mothering a dyslexic kid, it's that good, thorough

> testing up front is an investment that pays off over and over.

>

> The choice here is a stark one. You can fritter away gobstopping

> amounts of money and waste years trying this, trying that, and

mostly

> barking up the wrong trees. Or you can find out right now, once and

> for all, what's really going on -- and get directly to work today on

> fixing it.

>

> As far as I'm concerned, this is a no-brainer. Even if it's you own

> money. *Especially* if it's your own money.

>

> > But I've heard some say insurance has

> > not re-imbursed when they (the ffc) said it would. I've heard of

> > several

> > patients saying they bought hundreds of dollars of supplements

only to

> > find out they did not help or could not tolerate them.

>

> FFC doesn't seem to be operating directly in the CFS mainstream --

> but they've got a protocol that seems to work for an awful lot of

> people.

>

> I was prescribed nine things at the LA FFC. Three of them worked

> spectacularly well -- took me to a whole new level. Four gave me

> enough of a boost that I'm continuing with them. One helped, but

> caused unpleasant side effects (though I'm considering making

another

> run at it). The ninth one is still on the shelf, waiting for me to

> try it.

>

> That's seven out of nine hits, with the two remaining still on

> " pending " status. When I consider that most of these were things I'd

> never have tried on my own, I figure I've gotten my money's worth.

>

> (As an aside: my husband has chronic IBS that really drains down

his

> energy, so I hauled him down there last time I went. The doctor gave

> him stuff that totally cleared and repopulated his gut flora; then

> started him a couple weeks ago with some hormone and other

> supplements. The results, so far, are amazing. The guy I spent the

> day with today is someone I haven't seen in probably five years --

> happy, eager, full of strength, buzzing with good energy. So that's

> two.)

>

> > I've heard several

> > say that improvement was not nearly as fast as the 3-4 months ffc

says

> > it should be. The most disturbing was from someone who goes to

the

> > Bellevue (seattle area) clinic. She said that the doc there did

> > not know

> > how to interpret some of the blood tests!

>

> That last is a bit disconcerting.

>

> Mine couldn't explain to my GP exactly why he was giving me IM

> glutathione. *I* had to go online and find some of Rich's stuff,

> print it out, and take it to my local doc to get his cooperation with

> giving me my shots. (After my husband learned to give the shots, this

> wasn't an issue anymore). Yeah, it was a bit annoying. The doctor is

> a very smart guy, and I was impressed with him in general (he was a

> student of Weil's), but it was surprising he didn't understand

> the science behind the (very helpful) things he was doing.

>

> It's pretty clear that my FFC doc, at least, is also wayyyy out of

> the loop on a lot of the stuff we discuss here on this list. He's

> just not tuned into the mainstream of CFS medicine (such as it is) at

> all. Never heard of the Canadian critieria before I dropped it on his

> desk; and still wasn't sure he needed to see it (though he's very

> clear that the CDC criteria are bogus).

>

> It's OK, though. I don't care about his politics, as long as he gets

> results. And he does.

>

> I'm starting to wonder how much variation there is between the

> treatments offered at the various FFCs. My B12/AMP/glutathione

shots

> are made up at the FFC in LA; I have to have them airlifted overnight

> to Canada at prices that are breathtaking. (And their shelf life is

> just 4-6 weeks, so I can't stock up more than a few.) So I was

> looking into getting them sent up from the Seattle offices instead,

> which would be faster, easier, and cheaper.

>

> Turns out Seattle doesn't offer the same shot. Didn't really know

> what I was talking about, even. So, yeah, that suggests that they're

> not offering anything close to the same treatment at their various

> outposts.

>

> Given that experience, plus the new input from you, I think I'll just

> keep seeing the doc in LA.

>

> Sara

>

[Guest guest]

On Jan 8, 2006, at 7:25 PM, sedanmann wrote:

> I'm glad to hear both you and your husband are having improvement.

> It's

> really hard for me to say- about the Bellevue FFC. I've only heard

> from

> two people who have gone there, both second hand. One had good

> experience, one not. It is really not enough for me to go on.

Bear in mind that every doctor on the planet has patients who didn't

get what they came for, whatever that might have been. You can find

pro and con opinions on any doctor.

My long experience with this illness has been that (so far, at least)

it's unrealistic to expect that any one doctor is ever going to have

THE answer. Yet, through the years, there have been a good half-dozen

who have given me at least one critically important answer (or two or

three). They've all got their theories, and their areas of expertise.

They're comfortable with the part of the elephant they know best,

which is why they'll often think you're a bit daft if you try to

describe other parts of it and try to insist that it's part of the

same elephant, too. So you shut up, and take what they have to offer

-- even while you look for another doctor to take those other

questions to.

So thanks to Dr. Page, who first told me I was sick, not crazy. And

Dr. , who has given me seven years of good night's sleep. There

was Dr. Shames, who defied Dr. Page when she called him a quack, and

gave me thyroid anyway; Dr. Blessing-, who discovered my silent

asthma and allergies (even if I found her treatments intolerable);

Dr. Guilford, who was the first to address my hormones and

methylation, and actually fixed the allergies; Dr. Tenenbaum, who

balanced out my metabolism and decided I needed my glutathione

straight up; and Dr. Village, my current GP, who continues to keep

faith with me with open interest, healthy skepticism, and good humor

even when he's frankly bewildered by the whole situation.

Every one of those doctors had shortcomings. They overlooked the

obvious, ignored blatant symptoms, failed to follow through, let

their biases get in the way of their better judgement, and committed

a host of other sins. I could warn people away from every one of them

on some pretext or another -- not because they're bad doctors (a few

of them are world-class experts in their fields -- the Bay Area's

good that way), but because they're fallible and very busy human

beings, most with very narrow specialities.

But every one of them left me holding another critical piece of my

recovery. For that, I owe them all the respect you owe anyone who

gives you back your life.

The moral of the story is: Your doctors are not your friends. Nor are

they God. They are advisors. Choose them carefully -- but don't

expect they'll give you anything more than useful information. If The

Cure was out there, they'd all have it. As it is, those of us who get

better have almost all done it on our own, through dogged

persistence, exhaustive research -- and an endless willingness to try

anything that made sense, see it fail, and go out and try again.

> I suppose I

> could just go there for the tests, and then go somewhere else for

> treatment but that wouldn't make them too happy. I've been told the

> patient (or the one I spoke to) did not get a copy of lab results-

> maybe

> that's why.

This should not be a problem. The lab results, by law, belong to you.

It's your body; you paid for them; and other doctors who treat you

deserve to have access to all existing information. Ethically and

legally, they cannot refuse to give them to you.

I wasn't given a copy of mine, either, at first; but when I asked for

them on the second visit, he had a copy made right up, no problem.

> The fact that people are stuck with expensive supplements because

> they couldn't tolerate them is disconcerting (can't remember what they

> were- I'll see if I can find the e-mail and re-send to you if you

> want to

> p.m. your e-mail address to me) When I mentioned this to the doc, she

> just said " if that happens, we try something else " . They shold look at

> the patient's medical and treatment history, and see a pattern of what

> type of product the patient reacts negatively too so they avoid

> wasting

> time/resources. This is what my psychiatrist does -he knows from

> looking at my history not to try me on certain meds (he's an expert in

> treating people with cfs/fms)

Gee, this is precisely what I liked so much about FFC/LA. As I said:

Nine products, all very precisely targeted, none that I'd tried yet.

So far, seven have been hits. In the end, I may end up on all nine,

feeling 50% better than I did before.

Not that all of them were hits right away. Remember that ME patients

frequently have very strong, dramatic reactions to most drugs: if

there's a side effect, we're likely to have it. I took the nine FFC

supplements one at a time, taking the time to find the right timing

and dosage for each one before moving on to the next. There were some

seriously uncomfortable days, particularly with the hormones (too

much! not enough!), until I got it all balanced right. Often,

something that was intolerable on Day One was indispensable by Day Ten.

It took five months to integrate those seven items into my routine.

Getting to know any new supplement isn't something I can rush.

> The one thing you did not mention is the IV's. I've heard folks say

> they

> want you to have one a week- at $115 a pop. The bellevue doctor

> said " we can work around your financial limitations " . But if I

> don't do

> IV's, then will they not want to guarantee results? Oh well, 100

> messages a day here- I've got to get moving!

I don't get IVs, so it's not been an issue. My impression, in LA at

least, is that the treatments are tailored to the individual. Which

means you only get what you need -- and by no means everybody needs

or gets an IV treatment.

I do get the shots, which are $20 each plus the (gulp) overnight

international shipping -- that was $15/shot at first, but I've now

figured out how to get it down to $4.50/shot. At first, my GP gave

them to me weekly. Now, my husband does it every four days.

Sara