Fibro and Fatigue Centers - Fibromyalgia Message Board

debroueche · 08-21-2007, 03:37 PM

Has anyone been to (or know someone who has been to) one of the Fibromyalgia and Fatigue Centers located in Atlanta, Boston, Cleveland, Dallas, Denver, Detroit, Fort Worth, Las Vegas, Norwalk, Philadelphia, Portland, Pittsburg, Salt Lake, or Seattle? Did it help? Or, is their treatment just another bruhaha? I am considering going to the one in Atlanta, but I have heard the treatment they offer is expensive. I'm just wondering if it is worth it. Any comments?

builder · 08-24-2007, 04:43 PM

I looked into going to a few of them. They all sounded like snake oil salesman. All trying the same thing treatments I have tried with no results. Ambiem, Zoloft, HP5, massage, exersise, diet, etc. They only thing that works for me is pain meds when I get bad. Some of these places want you to pay 300 up front just to talk to the doctor. I have called many of these places just to get an idea of what kind of treatments they use. They won't even tell you anything until you pay upfront with a credit card. I've been to 5 specialists for my Fibro. Rhuemies, Neurologists, Endos and they have no answers to this disease. So these clinics do not have some magical treatments that make you fell any better.

ladyfairhair · 08-31-2007, 03:29 AM

Hi there! Yes I have been and currently still am a patient there- seattle wa actually its in Bellevue Wa.

I will tell you yes it is expensive- I have spent alot of money there. In my case my isurance paid for some things ( LAB fees) and visits I pay myself. In my case they put me on a plan where unlike any Drs I have ever been to... I only went about 7 visits and done. After that they put you on maintenace. Oh and then occasional labs for checking Thyroid Iron levels etc.

First visit they took 31 vials of blood! I havent even had blood work done elsewhere and I have NO idea why they dont do it but they dont- I think it should be one of the FIRST things they even do- very extensive.

They check you for everything under the sun practically and I chose to try to figure this thing out rather wasting my time chasing my tail with Drs, that didnt even believe in my condition anyway.

They found out alot for me- Have severe ANEMIA- Ebstein Barr Virus- Cytomegalo virus- possible Lymes disease- HYPOTHYROID - Adrenal exhaustion - Low Cortisol - and a few other things - these things I would NEVER have found out about if I didnt go there.

So my Dr. is FANTASTIC so I cant say what all the other clinics are like. She has developed a plan - I hardly even go there anymore- dont need to. She addressed each problem with things that actually worked for me.

AM I better? yes I would say so. I was functioning at about a level 3 (with all the pain etc) and now I am at about an 8 so thats very good for me. I used to have almost daily sore throats and those are gone ( I think from addressing the low level viruses) energy was about a 2 at best and I am at a 6 or so - thats been MY real challenge it seems- but still much better. Pain is significantly decreased.

I have a problem with patients- and had to realize that it takes time to heal and I didnt really start feeling better for about 1 and a half years but thats due to my thyroid and that length of time can happen to anyone not just Fibro people. I was spending that much time waiting for something that never helped me before that so at least I ended up with progress after all that time. Hope that made sense?

Anyway... there are alot of things to say about it - Its hard to say if you should go- this is what happened for me there and it was very good for me overall. If you have any questions feel free to ask and I will do my best. There are a few things I learned about going there that may help you if you decide to go- no biggie- just a few pointers thats all.

Good luck in your decision - I know how hard it is- God bless and keep you - LFH

builder · 08-31-2007, 08:17 AM

SO TELL US THE NAME OF THE CLINIC> WHAT DID IT COST YOU AND WHAT TREATMENTS DID THEY GIVE YOU?

Quote:

Originally Posted by ladyfairhair

Hi there! Yes I have been and currently still am a patient there- seattle wa actually its in Bellevue Wa.

I will tell you yes it is expensive- I have spent alot of money there. In my case my isurance paid for some things ( LAB fees) and visits I pay myself. In my case they put me on a plan where unlike any Drs I have ever been to... I only went about 7 visits and done. After that they put you on maintenace. Oh and then occasional labs for checking Thyroid Iron levels etc.

First visit they took 31 vials of blood! I havent even had blood work done elsewhere and I have NO idea why they dont do it but they dont- I think it should be one of the FIRST things they even do- very extensive.

They check you for everything under the sun practically and I chose to try to figure this thing out rather wasting my time chasing my tail with Drs, that didnt even believe in my condition anyway.

They found out alot for me- Have severe ANEMIA- Ebstein Barr Virus- Cytomegalo virus- possible Lymes disease- HYPOTHYROID - Adrenal exhaustion - Low Cortisol - and a few other things - these things I would NEVER have found out about if I didnt go there.

So my Dr. is FANTASTIC so I cant say what all the other clinics are like. She has developed a plan - I hardly even go there anymore- dont need to. She addressed each problem with things that actually worked for me.

AM I better? yes I would say so. I was functioning at about a level 3 (with all the pain etc) and now I am at about an 8 so thats very good for me. I used to have almost daily sore throats and those are gone ( I think from addressing the low level viruses) energy was about a 2 at best and I am at a 6 or so - thats been MY real challenge it seems- but still much better. Pain is significantly decreased.

I have a problem with patients- and had to realize that it takes time to heal and I didnt really start feeling better for about 1 and a half years but thats due to my thyroid and that length of time can happen to anyone not just Fibro people. I was spending that much time waiting for something that never helped me before that so at least I ended up with progress after all that time. Hope that made sense?

Anyway... there are alot of things to say about it - Its hard to say if you should go- this is what happened for me there and it was very good for me overall. If you have any questions feel free to ask and I will do my best. There are a few things I learned about going there that may help you if you decide to go- no biggie- just a few pointers thats all.

Good luck in your decision - I know how hard it is- God bless and keep you - LFH

elmhar · 08-31-2007, 01:40 PM

The Seattle/Bellevue FFC has an excellent reputation. Reports from patients at other FFCs around the country vary.

The commonality is that FFC is expensive; I was quoted arount $700 for each of the first 2 visits at Portland (Beaverton) FFC -- I believe that did not include the labs.

Some of the other FFCs around the country have variable reputations. Since they're all supposed to more or less follow the same diagnostic / therapeutic algorithm, I have to suspect that it may be the providers' personalities that make the diff.

People do vary in how responsive they are to the FFC treatment. Not all is known about fibro & chronic fatigue, so even applying all that IS known may not result in satisfactory improvement for everyone.

Best wishes.