Re: Fibromyalgia and Fatigue Centers

[Guest guest]

I went to one of these. It was a nightmare. Not only do they charge you like

crazy for every little thing, they keep you coming back constantly so you

have to pay the office visit rate of $185.00 after the initial expensive

visits. My nightmare has gone to the office of civil rights.

There is nothing they do in their clinics that you have not already read

about on most CFS lists. IMO, they are in it for a huge profit. They know a

few things here and there that your average GP doesn't know but that is not

saying much. Do your own research, then go to a CFIDS specialist.

[Guest guest]

After I posted this, I looked into this organization some more, and I

got kind of leery about them. Also, someone posted on another group

a slight warning there are no rheumatologists on board, and they

didn't like the idea of paying by credit card. Just thought I'd

share the flip-side!

K2

>

>

> Hi everybody,

>

> Just wanted to tell you about this organization called Fibromyalgia

and

> Fatigue Centers. They treat FM and CFS and non-specific fatigue

> disorders. They are a private corporation, and it's expensive.

They

> take Care Credit (which, for those who don't know is like a credit

card

> that some physicians/organizations accept for medical payments not

> covered by insurance).

[Guest guest]

Thank you yellerdog. I heard back from several people about this off-

list, and my original thought that I was leery of this organization now

rings very true. I should always trust my gut feeling. I appreciate

your feedback.

BTW: I have a yellow Lab/Shepherd mix. He's like Old Yeller. They

tell me he's part Black Mouth Cur.

K2

> I went to one of these. It was a nightmare. Not only do they charge

you like

> crazy for every little thing, they keep you coming back constantly so

you

> have to pay the office visit rate of $185.00 after the initial

expensive

> visits. My nightmare has gone to the office of civil rights.

[Guest guest]

Hello All,

This is long, so feel free to delete if you have no time nor inclination

to hear a personal story.

K2 wrote recently about the Fibro and Fatigue Center, which I've been

going to. I had written earlier here about the results of my first

couple of visits and what was found. That was before you joined, I

think, K2. As a summary, I go once a month and had my 5th visit day

before yesterday. Since some people seem to be interested in what is

happening, I'll give a brief synopsis of what happed this time. Last

month, my Dr. had re-checked all of the blood tests that had come back

as abnormal 4 months ago. This included low iron, low growth hormone,

cholesterol, triglycerides, C-Reactive Protein, all kinds of

inflammation markers, high insulin, way too much reverse T3 and not

enough T3, every sex hormone out of whack, adrenal insufficiency, and

blood coagulation defects. I was diagnosed with CFS, FM, sleep

disorders, and a number of other things related to the blood tests.

They had also had me on an anti-yeast diet for the first three months,

but I'm off that now. Two months ago, he checked me for viruses and the

only active antibodies that showed up were Epstein Barr. I've been on

Famvir, an anti-viral, since then. I'm also on quite a few supplements

as well as bio-identical hormones, and T3, cortisol, fludrocortisone,

and Lunesta (for sleep) and Ultram (for pain so I can sleep). We're

trying to get my insurance to approve Xyrem for sleep as well.

Every time I go, I have an hour-long interview with the Dr. (the first

two times it was almost 2 hours). We update meds and supplements each

time, and I ask a laundry list of questions. I then get two IVs, one

that is an anti-viral and one that is for memory. Local patients can to

these once a week, but unfortunately, I can only do once a month. I can

tell a difference when I get them. For the first 4 months, instead of

an anti-viral, I got an IV for joint and muscle pain. I'd feel somewhat

better when I went home and then over the month, I'd deteriorate back to

what I felt like before. However as the months progressed, I didn't

deteriorate quite as far as before. During the last two months, with

the anti-viral IVs, I've had just a bit of a Herxheimer Reaction -- an

expected die-off of the nasties in your system. The liver can only

clean them out so fast, so you feel kind of achey and tired until

they're gone. That's actually a good thing as long as it doesn't get

too bad, because it means that you're getting rid of the things that are

making you sick.

I also was given an injection for energy -- AMP, B-12, and glutathione

(if I remember correctly). We have this here at home and my husband

gives me these shots every week. That helps some, but I think of it

more as a means to prevent the deterioration and keep the energy I have

going, rather than an energy boost. This time he has started me on

Heprin injections for my " sticky blood " because the supplements weren't

getting enough of the clotting fibers out of my system. They helped,

just not enough. Two shots a day for 4 months. They don't hurt

though. He's still increasing my T3 too. The hormones are better, but

not quite right, so he's adjusting them. Almost everything else has

improved -- triglycerides down, iron up, cholesterol dropped 30 points

(due to getting yeast under control), the insulin is still high, but has

been cut in half from what it was. He thinks the supplements will

continue to increase cellular insulin sensitivity over time. Growth

hormone and cortisol are improving. He's pretty sure that these will

get better once I can get the inflammation completely out of my system,

which I can only do after we clean the fibers out of my blood, hence the

Heprin. He doesn't guarantee a cure, but he thinks I can come a

substantial portion of the way back into functionality.

The people at my center (in Atlanta) are wonderful -- very personable,

patient, understanding of my mental lapses, and they remember who I am

when I call in the middle of a month with a question. K2 is right, it

is pricey. I spend around $1K a month between the Dr., IVs, meds, and

supplements. For this price, I get an expert in CFS/FM in a center that

belongs to a network of centers with Teitelbaum as their Medical

Director (he's the author of " From Fatigued to Fantastic " and " Pain

1,2,3 " Before I would go to my GP, wait 3 months to get into an

endocrinologist he referred me to, wait 3 months to get into a

rheumatologist that the endo. referred me to, etc. None of theme would

talk to the others, each only looked at their specialty. The one thing

I've learned in all this is that CFS is a very interwoven web of many

systems malfunctioning all at the same time and all have to be treated

synergistically in order to improve. Yes, I'm going into major debt, but

I don't see any other way to ever have a hope of any improvement. My

insurance covers the labs (done by Quest in-house), the doctor's time

(after deductible at 80%), most of the meds, and none of the supplements

or travel expenses.. I've had to get the office to write a letter of

medical necessity on one or two of the meds that they wouldn't cover

otherwise, but the center is happy to do that. They just won't file

insurance for you. You have to do that yourself. You can also email or

phone in questions during the month if you are a long distance patient

like I am (I live 8 hours away) -- they're very good about returning

calls and emails.

Wow, I had no idea how long this was getting. Apologies. But I wanted

to let those who are interested know what my personal experience has

been with this group, in case anyone is considering contacting them.

And, no, I have no financial connection to them (I wish!), even though I

sound like a walking commercial.

K2 wrote:

>

>

> Hi everybody,

>

> Just wanted to tell you about this organization called Fibromyalgia and

> Fatigue Centers. They treat FM and CFS and non-specific fatigue

> disorders. They are a private corporation, and it's expensive. They

> take Care Credit (which, for those who don't know is like a credit card

> that some physicians/organizations accept for medical payments not

> covered by insurance). If you have PPO insurance, you can get

> reimbursed for the costs. Their web site is www.fibroandfatigue.com

> They treat the core issues of the disorders instead of " masking the

> symptoms " (their words, not mine), and use a holistic approach. It

> requires a commitment of several appointments, and is quite pricey, but

> it looks like something I might try so I thought I would pass it on to

> others.

>

> K2

>

>

[Guest guest]

i also go to a dr. that does all those things,

hormones, vitamins, etc.... i take so much thyroid, T3

and T4 that an ordinary dr. would laugh (!) and he has

helped me more than i can express!!!! REALLY!

tikva

--- Sikes wrote:

> Hello All,

>

> This is long, so feel free to delete if you have no

> time nor inclination

> to hear a personal story.

>

> K2 wrote recently about the Fibro and Fatigue

> Center, which I've been

> going to. I had written earlier here about the

> results of my first

> couple of visits and what was found. That was before

> you joined, I

> think, K2.

[Guest guest]

Wow, Thank you . I am still debating going or not. The part

about the IV's really scares me. I have never had an IV in my life!

It just seems like chemotherapy. I actually emailed back and forth

with a woman at the center near me, and explained this to her, and

she said they won't do anything I don't want them to do. I have

hereditary spherocytic anemia (my body kills my red blood cells) so I

have to be careful about stuff. I live 48 miles away from the

center, and I thought THAT was bad (an hour drive). You live eight

hours away! Holy!! The woman told me I could get on their " long-

distance " plan (that's not the name of it, I can't remember what it's

called) but it means you go for the first visit and then a couple

others but the rest is done by phone and email. I can certainly

afford it financially, that's not an issue, it's my time and the IV-

pumping that keeps me from taking the plunge!

Thank you again for the information.

K2

>

> K2 wrote recently about the Fibro and Fatigue Center, which I've

been

> going to.

[Guest guest]

Here's my 2 cents: I've been a patient at the Denver Fibromyalgia &

Fatigue Center for the last 5 months or so. Yes, it's expensive. And I

find their somewhat over-slick marketing materials irritating (I'm

allergic to marketing in general anyhow). I tried the recommended IV's

a few times, and then discontinued that aspect of treatment because I

didn't feel any particular improvement from them. And the supplements

-- ye gods, what a lot of pills to take! I probably won't stick with

all of those over the long run.

BUT after years of going from doctor to doctor, and having them all

tell me " your test results are normal " , Dr. Deborah Sainer at the F & FC

in Denver was willing to believe me when I said I didn't feel well.

After the first round of blood tests and supplements produced no

particular improvement, she ordered a second round of blood tests for

infections, and guess what? It came back positive for Lyme Disease and

several other co-infections. NO OTHER DOCTOR HAD EVEN MENTIONED LYME

DISEASE. It seems the symptoms for Lyme are almost identical to those

of CFS. I'm learning that Lyme is notoriously hard to detect, and

chronic Lyme is difficult to treat. But having a start at a diagnosis

is HUGE for me. I've started in on antibiotics targeted at mycoplasma

pneumoniae, and am experiencing what I believe is the mentioned

Herxheimer reaction--fever and aches, kind of a flu-like

feeling--which is supposed to be a good sign. After this round of

antibiotics, the next step is a round of anti-virals (for Epstein-Barr

& cytomegalovirus), and then probably a different kind of antibiotic

to target the Borrelia (the organism that causes Lyme Disease).

So far I've been very happy with the care I've received from Dr Sainer

at the Denver F & FC. Since I just moved to the Boston area, I'm

planning on following up with the Boston F & FC, and hope I will like

that doctor as well. If I don't, there are a lot of other options in

the Boston area and I'm sure some research on my part will turn up

someone who's up to date on this stuff.

Not all doctors are right for all patients. But I'm glad I went to the

Denver F & FC.

Marcia on

Salem, Massachusetts

[Guest guest]

The IVs are merely a concentrated version of supplements that you *can* take

orally if you really don't want to use an IV. In addition, you can have the

same IV ordered for you at your local doctor's office for a fraction of the

cost of going to the F & F clinic without the ridiculously high office visit

fee. Even better, your local doctor can order a vial of the IV concoction

and you can inject it subcutaneously at home. For example, B-12 shots are

very easy to give and not at all expensive.

If you have insurance and plenty of money, then the cost of visits and IVs

shouldn't worry you. If you are disabled by CFIDS or FM and live on

disability, you are out of luck. The clinics do not take Medicare. The cost

of an IV, the supplements, and the doctor's time is also not covered by

Medicare. The clinics specifically opted out of the Medicare program.

Take a minute to think about this. There are more people with CFIDS than

with breast cancer. Most of them have, at some point, become disabled and

not been able to work. This clinic makes it impossible for someone who is

severely ill and not independently wealthy to get medical help from their

clinics.

[Guest guest]

Thanks Marcia. I'm in Mass., too. But I'm 50 miles from the FFC. I

have been tested for Lyme because it's so prevalent here in Mass. I am

always exposed to ticks because I go in the woods with my dogs and I

cuddle with my dogs all the time. I've found ticks ON me, but never

BITING me. I am a little obsessed with checking myself, so I am not

aware of a bite, but from what I understand it's the teeny tiny ticks

that cause Lyme, not the ones you can see. I fully believe that I do

have Lyme, even tho my tests came back negative. That is very common

because most labs don't do the expensive test that costs like $250. I

know seven humans who have Lyme and are being treated for it, and both

of my dogs had Lyme and were treated for it. I'm still thinking about

the FFC. Thank you for the information, it is very helpful. (P.S.

Since I'm in sales and marketing, well, I don't have a problem with the

slick materials lolol!)

K2

> Here's my 2 cents: I've been a patient at the Denver Fibromyalgia &

> Fatigue Center for the last 5 months or so. Yes, it's expensive.

[Guest guest]

For me, the finances are not an issue. The thought of a needle or IV

gives me the heeeebie jeeeebies. I also had a bad reaction to anti-

biotics the ONE AND ONLY time I ever had to take them in my life. In

fact, that is when all of my FM/CFS started, so I'm very shell-shocked

about anti-biotics and drugs/supplements in general, since I always

react so sensitively to substances. One time, I was given a mouth

rinse for dental problems. The label said in " rare " cases, the patient

can have psychotic episodes. Guess what? I had a psychotic episode.

From a flippin' mouth rinse! lolol!

K2

> The IVs are merely a concentrated version of supplements that you

*can* take

> orally if you really don't want to use an IV. > If you have

insurance and plenty of money, then the cost of visits and IVs

> shouldn't worry you.

[Guest guest]

The IVs ARE optional. Nothing is required. They ask me every time if I

want them. Of course, I do, I know both from research and personal

experience that they help. YMMV. I have a few odd conditions, but

nothing as life threatening as yours. My Dr. loves me to bring him new

info as I find it, but he almost always knows about it when I bring it

in. He is also very patient with my list of questions that I bring in

each time.

I know there are people who do the Long Distance approach. They offer

that to me every time, but I really like the IVs. Either way, the Dr.

and nurses, and office staff are available 4 days a week, by phone, and

24/7 by email. Even if you don't do the IVs, I would still have

benefitted hugely from getting the blood tests done and at least

treating what I could using that approach. The IVs are more just

support for everything that is done to treat the problems, anyway. The

various organ systems that are falling down on the job are all

interrelated, even if I had waited all those months for trips to the

rheumatologist, endocrinologist, etc. They never would have spoken to

each other. These guys do the jobs of all of them as they relate to

CFS/FM and nothing else. They have weekly conferences with all the

other doctors in the network and their Medical Director, Dr. Teitelbaum.

There are other CFS/FM clinics around besides the Fibro and Fatigue

Centers. I'd recommend that approach to anyone. I am very happy with

that approach as opposed to using individual, unrelated specialists --

at least in my case.

Hope it helps,

K2 wrote:

>

>

> Wow, Thank you . I am still debating going or not. The part

> about the IV's really scares me. I have never had an IV in my life!

> It just seems like chemotherapy.

[Guest guest]

Yellerdog,

I can understand that these clinics are not for everyone, and are

especially unavailable to someone who can't afford it. (I've always

wondered why there are no non-profits around to help with payment for

things like that.) I can understand your being angry about the

unfairness of it. In an ideal world, everyone who needs a particular

therapy should get it. I agree 100%. However, I'm very glad that they

exist, unfair policies notwithstanding. Before I can help anyone else

get out of this pit, I have go get myself out. I'll take whatever help

I can get. (They maybe I can start that non-profit.) Yes, the cost is

high, but no higher than any other specialist I've gone to. I pay $185

for at least an hour of personal one on one with my doctor (sometimes

more than an hour).

As to your comments on the IVs, there is a bit of a mistaken assumption

behind them, as I understand it. For many of us, at least when we begin

treatment, we have gastro-intestinal problems that prevent the proper

assimilation of nutrients that are taken by mouth. That's the point of

the IVs, in that they bypass the gut and get the supplements where they

can do some good in the bloodstream. For me, at least, these were a

definite help. They mix the IVs in the office as they are needed,

because the nutrients begin to degrade as soon as they are opened. I

looked into getting some made by a compounding pharmacy for me in my

state, and found one, but they couldn't get it to me fast enough for me

to use it before it degraded. My Dr. doesn't have the office space to

do IVs or I would do them there. The chemo office in the hospital would

do them if they were ordered by a Dr. on staff at the hospital (which

they aren't, being out of state). Visiting Nurses would too, but the

Dr. has to be licensed in my state. Florida laws may be different than

other states. You wouldn't want to inject these -- they total 700 ccs.

While my local GP knows about the treatment, and thinks I'm doing the

right thing, he won't order anything for me himself, due to liability

issues. He hasn't been trained in any of these treatments, and doesn't

want to take on the responsibility. I don't really blame him. I'm not

going to sue him, but our society is ridiculously litigious.

Just wanted to clear that up, Hope it helps.

yellerdog wrote:

>

> The IVs are merely a concentrated version of supplements that you

> *can* take

> orally if you really don't want to use an IV. In addition, you can

> have the

> same IV ordered for you at your local doctor's office for a fraction

> of the

> cost of going to the F & F clinic without the ridiculously high office

> visit

> fee. Even better, your local doctor can order a vial of the IV concoction

> and you can inject it subcutaneously at home. For example, B-12 shots are

> very easy to give and not at all expensive.

>

> I

>

[Guest guest]

Also, just to add that I have heard things vary greatly with different centers.

The center in Atlanta seems to be pretty good while the center in Mass is

horrible at best.

[Guest guest]

i'm not sure i'd want to go to a center, i like an

independant doctor.

the worst of all are the idiots that say nothing is

wrong except your brain.

tikva

[Guest guest]

I'm so sorry to hear about all these reactions to stuff you've had to

endure! All that ever happened to ME was hives twice (antibiotic pills;

isolated incidences)and the time I was in the hospital and they let an

intern practice starting an IV on MY arm. (Had never done it before; I

felt bad for her, but damn it hurt!! They have to learn somewhere...)I

can't remember if I'd posted this before or not, but my doctor has alot

of patients for whom antibiotics either do not work or the person is

horribly allergic. This caused him to become creative in coming up with

his own mixtures(herbal) for various common to us maladies. I can

attest to the fact that they actually do work. Also that he is VERY

conservative and careful about histreatments is somethingI admire; he

does reall thouropugh histories in the beginning and soon. If you can

get to NYC, it's Dr Enlander; www.enlander.com/.

Jane with the hound

> For me, the finances are not an issue. The thought of a needle or

>IV > gives me the heeeebie jeeeebies. I also had a bad reaction to

>anti-> biotics the ONE AND ONLY time I ever had to take them in my

>life. In > fact, that is when all of my FM/CFS started, so I'm very

>shell-shocked > about anti-biotics and drugs/supplements in general,

>since I always > react so sensitively to substances. One time, I was

>given a mouth > rinse for dental problems. The label said in " rare "

>cases, the patient > can have psychotic episodes. Guess what? I had

>a psychotic episode. > From a flippin' mouth rinse! lolol!

>K2

> > > The IVs are merely a concentrated version of supplements that you

>> >*can* take> > orally if you really don't want to use an IV. > If

>>you >>have > insurance and plenty of money, then the cost of visits

>>>>>>and IVs> > shouldn't worry you.