Had anyone heard of Fibro and Fatigue Clinics (FFC)I've emailed and they do treat lyme with long term IV or oral abx and they test using IgeneX.
They also test for coinfections,viruses, hormonal, adrenals and etc...
The only thing that is weird is they sell their services in packages. She said I would have to commit to a 12 month plan... She said they first test and treat abnormalties of the immune system, hormones, and etc... and then treat the lyme. They usually start on 3 months of IV. She said I would then follow up monthly. She said being that I lived overseas I could come for the iv treatments, then do the monthy follow ups by phone, and then come back every 4-6 months to see the dr.s.
She said to treat lyme, viruses, coinfections, and hormonal, and immune issues would all be about 5000-6000 dollars a year. Supplements and meds are included as I beleive are the labs (I think).
Does this sound weird? It almost sounds too good to be true?
I'd like your opinions...I'm new to all this and don't really know...
Thanks for your help.
Posted by Parisa (Member # 10526) on :
I don't have personal experience with these clinics but it seems to me that over the years I've been here that I haven't heard great things either. I think the 12 month financial commitment is a huge red flag although if everything is included (labs, meds, supplements) for $5,000 that would be a bargain.
Posted by kareamber (Member # 20110) on :
It all sounds good.. their treatment, their labs, etc... but I can't figure why the plans? That is what makes it suspicious...
It looks like they recognize that Chronic lyme exists, that it is underdetected/undertreated, and the other functions such as immune, hormones, and coinfections must be addressed...
Anyone else?
Posted by Keebler (Member # 12673) on :
- Yeah, they may recognize it but only to a slight degree.
They will not TREAT lyme disease - other than loading you up with tons of supplements that can help only if the underlying infection is also adequately treated, which they will NOT do at F & F centers.
-
Posted by kareamber (Member # 20110) on :
So it's probably not a legit place for lyme treatment? It looked so promising... I guess that's the point...
Thanks.
Posted by Keebler (Member # 12673) on :
- They are very deceptive in their marketing.
And for some folks with exhaustion NOT from chronic stealth infection, they may be a good choice. But if infection is involved, they miss the mark.
Unless they are extremely LL, they simply cannot treat the immune system of a patient with lyme like they would that of a patient w/o lyme.
Now, if by some miracle, the particular center about which you inquire does things differently, you may have a chance.
But I'd sure want to see the particular doctor who will be treating you, find out their background in detail and exactly what the options of treatment they have.
Is that doctor an ILADS member? At least, is that doctor ILADS-educated in that s/he has seen all the DVDs of past seminars and attended some in person?
Even if a doctor varies from ILADS or Burrascano treatment guidelines they MUST know all about them as well as the way the spirochete functions, etc.
When you call the center in the location closest to where you will be living, ask for the medical manager. I really grilled mine and at first they were all "Sure, we can treat lyme if that is what you have" but after 5 minutes, the broke down and admitted they they will not use a long protocol of antibiotics and they never even heard of ILADS.
Now, in my state, no doctor is allowed to treat lyme beyond a few days. So, it may be that in my state the F & F centers are not allowed to treat lyme but it took me 5 minutes to find out that they say things they don't mean.
She kept trying to get me to go in for testing first. I said I'd been tested and she just would not hear of that. They wanted to do all the testing themselves which, if they were LL, might be good.
Before you spend a dime, really interview them as if your life depends on it because it does. But doctors generally charge us to interview them well enough for us to make decisions about their knowledge base. -
[ 12-31-2009, 07:32 PM: Message edited by: Keebler ]
Posted by Lymetoo (Member # 743) on :
It costs way more than $5,000 from what I've heard. I THINK the one in TX is "OK"...I have the name of the LLMD there.
But like I said, I think it's way more than what they're telling you.
Posted by Blackstone (Member # 9453) on :
Magic centers with secret protocols promising wellness? Admittedly I've not delved into the ad linked, but as a rule these are usually opportunistic crap.
They may or may not be headed up by an unscrupulous physician or in states that don't regulate ND or other natural medical degrees, a two-week ND from a mail order faux college. They typically will refuse to explain their complete protocol and what makes them so different from other physicians or centers. Of course, they take no insurance and expect thousands out of pocket for their therapies, not to mention all the supplements and surcharges. In the past, some have even been fronts for cults and other organizations like Scientology.
They are the lowest of the low, promising "secret" healing to people who are desperate enough to sign over their house. Don't fall for these tricks!
Posted by seekhelp (Member # 15067) on :
Scam for sure I think. I think they're headed by Joseph Teitelbaum, M.D. The guy writes books and seems to care about sick people and at the same time charges a mini-fortune to see him. I think it makes LLMD fees look like peanuts. Obviously, it's all about the $$$$. Sick of that.
Posted by BTTaylor (Member # 14342) on :
I had experience with the FFC outside Seattle before I knew I had lyme. They diagnosed me with chronic fatigue and didn't even test for lyme until a year later. Expensive if you don't have insurance and they push their supplements. My doctor left(fired really) because she wouldn't push the supplements. I was fortunate because my insurance covered all the blood tests. Personally I would look for a LLMD.
Posted by jarjar (Member # 8847) on :
Run don't walk from these places. They have been around for awhile and seldom do you hear anything positive about them. Save your money and find a good llmd even if you have to travel out of state. In the long run will be less expensive.
Posted by cottonbrain (Member # 13769) on :
If you go to the Prohealth board, lots of people there have gone to these centers -- you can get more first-hand accounts there. good luck.