posted
Hi, I just discovered Fibromyalgia & Fatigue Centers. I would like to hear from anyone who has been under treatment at their Houston or Dallas location.
I've been treated w/ lots of RXs for many years for rheumatoid arthritis, but I've always felt it could be a misdiagnosis. My life has been very unhappy for many years due to the physical and mental limitations.
Thank you for your thoughts! Gina
Posts: 7 | From San Angelo, TX | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Best to find an ILADS-educated LLMD, even if you have to travel.
Also ask at your local lyme support groups and the CFS and Fibromyalgia support groups. Ask people if they are being assessed for a full range of tick-borne infections and, if so, are they getting treatment.
Most of these around the country do understand the fatigue issue but most will not assess or treat lyme. They offer lots of pretty good band-aids but if lyme is the problem, band-aids are not going to work.
It can vary from state to state but, and even if they say they treat lyme, you need to do a tremendous amount of homework to be sure they are truly ILADS-educated and literate in all matters.
it's still best to see a true lyme expert if you can. One with lots of experience who has helped many patients get better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I agree with Keebler. Many patients have spent tons of money at the Fibro & Fatique Centers and remained undiagnosed.
That said, even if they test you for pathogens, you will have to find an LLMD for proper treatment. (And they may not use the right tests!)
quote:Originally posted by gnadec: Hi, I just discovered Fibromyalgia & Fatigue Centers. I would like to hear from anyone who has been under treatment at their Houston or Dallas location.
I've been treated w/ lots of RXs for many years for rheumatoid arthritis, but I've always felt it could be a misdiagnosis. My life has been very unhappy for many years due to the physical and mental limitations.
Thank you for your thoughts! Gina
Posts: 4 | From Henderson, KY | Registered: Jan 2010
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posted
Hi Gina: I am going to Fibro and Fatigue in Atlanta. Have gone for 4 months. They ran a ton of tests and with my diagnosis of Lymes and a coinfection I am being treated. I no longer have the Lymie arthritis and the brain fog is lifting.
I got bit by a tick 8 months ago.
I am on several Rxs and supplements. They are slowly repairing the damage to my adrenal gland and thyroid.
I have heard of several success stories from fellow patients about recovery of others from Lymes at this clinic.
Hard decision to make, from another Gina
Posts: 4 | From Henderson, KY | Registered: Jan 2010
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
It was cost prohibitive for me and the testing was very broad and not specific for TBD.
I went after my Lyme treatment but they were trying to get me to pay the $2000 fee per month for treatment and I thought it was way to high for not treating anything specific.
What I did instead was go to an endocrinologist for the fatigue and am on HGH injections instead which has helped me tremendously and is a whole heck of alot cheaper.
Also going to a specialist helped pinpoint the cause of my lingering fatigue after Lyme treatment.
Hope this helps.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While many of the F & F centers do not adequately address TBD and all the nuances, for anyone going to a F & F center that is doing a good job in this area, PLEASE contact the leaders of all the lyme support centers in your region so that you can share your experiences.
For many, in the rare case that a F & F gets lyme or TBD right (or even with some limitations), this may be the only option for some patients in states where there are no LLMDs. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i have a friend who goes to the one in dallas.
i'm positive she has lyme. they, however, diagnosed as bi-polar and a ton of other psychiatric illnesses.
she's got at least 20 bottles of all kinds of medicine and it ain't good.
she got a disability based on her diagnosis and is now considered fully disabled. i doubt if she will ever work again.
i wish she would listen to me, but she stays pretty medicated.
shame.......
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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