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    Old 08-21-2007, 02:37 PM   #1
    debroueche
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    Question Fibro and Fatigue Centers

    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?

    Last edited by debroueche; 08-22-2007 at 06:34 AM.

     
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    Old 08-24-2007, 03:43 PM   #2
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    Re: Fibro and Fatigue Centers

    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.

     
    Old 08-31-2007, 02:29 AM   #3
    ladyfairhair
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    Re: Fibro and Fatigue Centers

    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

     
    Old 08-31-2007, 07:17 AM   #4
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    Re: Fibro and Fatigue Centers

    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 View Post
    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

     
    Old 08-31-2007, 12:40 PM   #5
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    Re: Fibro and Fatigue Centers

    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.

     
    Old 09-06-2007, 04:49 AM   #6
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    Re: Fibro and Fatigue Centers

    Thats it elmhar- what she said.

    Well its called the Fibro and Fatigue Center in Bellevue/Seattle Washington. I will call her Dr. M - she is the BEST DR> I have ever seen. She is an excellent Dr. I cant say enough about her and her ideas, thoughts, compassion, her Brain(she is so intelligent) and her overall care.

    So it cost me - lets see - the labs were and form what I heard- covered by alot of the insurnace co's out there. They have the LAB right there in their office although they are Seperate as well. They took 31 vials of blood- dont know what that cost me.

    First visit was about 300- then each visit after - about 180 . I only needed to go see her about 5 or 6 times... with occasional blood tests to check my Thyroid levels - to make sure they are optimal. (She doesnt charge me that to just check my thyroid) I had no idea I was Hypothyroid because no other Dr. bothered to test it. I was found to have a bunch of things wrong-(posted in other areas of this board)


    {rstarre} -Ill make it brief- dont want to write all this out and you dont revisit this thread. Done it a thousand times - we all have probably- so I could elaborate on anything you might want to know- later if you read again.

    you asked about the treatments they gave me- Thyroid meds- Cortef for adrenal exhaustion- stuff for my hormones- help with Anemia (again was never even tested for that) ruled out Lymes or ruled it in (thats another story) Mitochondrial (help with that) another thing...
    Just knowing is half the battle. If you can get a Dr. to test all of this and can take proper care -then go there(heck even getting a Dr. to believe is a big part of it) With insurance it wont cost you .

    When I was seeing a rheumy for all of this and he had me on pain meds- it cost me 6 hundred dollars a MONTH to keep myself in meds and once you are there you have to buy it -so you dont have any withdrawl -from NOT having it. I hated it. SO i got off it all. So going here actually saved me money - thats $6,000 in less than a year. (10 months) And it wasnt the right thing in my own case. I was complete Zombie and still in pain... as opposed to being in pain ...but not a Zombie. Plus it cost me 105 dollars every month and sometiems every other month depending on when he decided he needed to see me and would spend honestly about 5 mins each visit. Plus... cost of meds! wow.

    Anyway- each situation is different of course and some people do well going to FFC- some do well on just meds.. its whatever works...thats what ya gotta do. WHATEVER works.

    I cant speak for the other clinics so I dont know what they do... but from what I know- they DONT always follow the same exact protocol. Some of the Drs. in other clinics might feel a certain way about something in the protocol and they wont use it. I do remember wondering why a certain clinic wasnt havign their patients do a certain thing or whatever- I just dont remember- they have the same name and I assumed they did the same thing, but they didnt. And like Elmhar said - it really depends on the Dr. and Seattle has a great one. Very excellent rep.

    So any questions about this place I will gladly answer. its nice to keep your options open. I would have to say that whatever clinic you called - wouldnt tell you what they do there... thats just wrong. Didnt they offer to send you a brochure explainign what it is that they do there? Then again thats not the same place I go so I dont know.

     
    Old 09-09-2007, 07:14 AM   #7
    debroueche
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    Re: Fibro and Fatigue Centers

    LadyFairHair,
    Thanks so much for responding. That's what I wanted to know, just that they helped someone..I've pretty much decided to go already, and your response is appreciated. For anyone else that is interested, they are listed on the internet as Fibro and Fatigue centers, their treatment plan is pretty much spelled out and the treatment costs are listed. The only thing that is not listed is the cost of lab work, and it is done by Quest. So if your ins covers Quest, you're ok.
    Also, from what I understand, one of the founding members of these clinics wrote the book "From Fatigue to Fantastic" so I've been reading that. It is pretty informative, like - I didn't know that a low level of magnesium causes muscle cramps/spasams. I have a supplement called CALM (got it at an Herb Shop) which is calcium and magnesium, but I had not been taking it until I read that, I have a lot of muscle cramps, so I figured it is certainly worth a try.
    Thanks again, d

     
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