I thought I'd post this just in case anyone wants to try this place.
I was ill for 9+ years & they were the ones who actually found out I had Lyme... not Fibromyalgia.
They do alot of tests & they are helpful. They are also quite expensive. That's why I stopped going. They may be of help for getting testing done. They are very thorough. There is a cross-over between Fibro & CFS & Lyme...
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Posted by Keebler (Member # 12673) on :
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It is fantastic that you were able to get dx there. I'm glad to hear that because I called them when they opened near me a while back.
It depends upon the state in which one lives as to if the F & F center would either dx or treat lyme.
In my state (where the medical board says there is no lyme) they do not do the right tests. They also won't treat chronic lyme for anyone coming in already dx. (But, then, no other MD will treat in this state, either).
Be sure to call ahead to find out from the office manager. Be absolutely certain which labs and what tests - and if they will treat or not beyond 10 days or 3 weeks.
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Posted by bettyg (Member # 6147) on :
others have sent me info too that their state will NOT TEST OR TREAT LYME!
good for others things but NOT LYME!
Posted by seekhelp (Member # 15067) on :
I called just to get pricing. They sound like they just want you in the door to make more $$$. I've honestly had enough tests. I highly doubt they can find anything my LLMD, holistic doc, PCP, and many, many specialists couldn't detect.
They say there's a detailed 24 page questionnaire you complete before coming.
I DO NOT want to pay $395 for a F/U visit if my results are OK. They may be good to use as a lab resource. Basically, I'd go in there, obtain a script, and tell the lab to send the results to other docs. In other words, use them for your ability to test diagnostically.
Here's the kicker everyone: $100 for initial consult. THEN, they charge $395 to get your results at the next 1 hr appt. They seem to push IV treatment for $150-$200 a pop (maybe even at first session) along with supplements. I would venture of course they sell all their own supplements. Am I right?
Follow-up 1/2 hr visits are $195. They do all lab testing through Quest / LabCorp so scrap all the TBD stuff, right?
One can get in there in a week. That doesn't say much for their popularity in my eyes.
As always, they participate with no networks. Same old same old.
Sparkle, did you find they ran lab work that other docs never considered? Did the results of that unusual lab work, if done, help you wiht a treatment plan?
Posted by Lymeorsomething (Member # 16359) on :
There's one of these in CT. I'd be interested in hearing feedback from anyone who used it....
Posted by Kingneptune11 (Member # 17751) on :
I went to the one in Cleveland Ohio a few years ago.....when I thought I had CFS/Fibro.....The clinics vary in "quality", depending on the doctor working there......
They are definitely a "money maker" for the owners......Any time you have these "franchise" health care clinics.....they are going to be about the money......
Like Seekhelp said, they are good for getting the testing done, if you want a comprehensive blood work to evaluate your situation.....But to do the bait and switch with the fees is just PATHETIC.....These clinics are going to crash and burn under the economy we are facing for the next few years......People dont have thousands of dollars to just spend randomly......Personally, I dont have good feelings for these clinics.....in case you cant tell......lol They really push high dollar treatments.....in my experience
By the time you figure out its not helping, you have already spent thousands out of pocket.....They sell you the sky, but rarely deliver......I do like their supplements, but you can find them cheaper on the internet.....
Thanks for posting this Sparkles......I guess it depends on which doctor you get at the clinic.....SOme are really good, some are just mediocre......
Posted by sparkle7 (Member # 10397) on :
I went to the one in CT. My doctor there was excellent but he has left. They have a deal with Quest & they have cheaper prices for lab work than if you get it yourself through another doctor (unless your doctor has a special deal, somehow).
At the time, I had been to many doctors in NJ. None of them had a clue about Lyme. You would think in NJ, they would know about this... I wasted 9+ years thinking I had fibromyalgia. So, the tests & diagnosis were worth it.
I spent a bundle @ the FFC. The drips, IV, shots & vitamins/supplements were not worth it in my opinion. You can do much better on your own over the internet or elsewhere.
You can tell them that you don't want any treatment until after the tests come back. This will save you money for stuff you may not need.
They don't mind if you get supplements from other places then them. They do overcharge for these things. You can buy them yourself over the internet.
The tests & consultation were worth it. They saved me another 10 years or more of going from doctor to doctor.
Many people here are very savvy. If you are knowledgeable - it may just be worthwhile to go there for all the tests they do. I've heard that some LLMDs don't do all of the testing.
We really need to know what we are fighting in addition to Lyme. The FFC is very thorough in assessing the viruses, bacteria, mycoplasmas, etc.
I can't believe they won't let them treat people with Lyme in many states... it's just unbelievable! One suggestion is to not say you have Lyme if you know you do - but would like to use their treatments/tests... Don't tell anyone I said this - LOL.
I also think they are good because they do a range of tests... if you went to separate doctors for all of this it would be more expensive - like endocrine function, bio-identical hormones (if you want them), compounded stuff like thyroid medication, neurotoxin tests & meds, IVs & drips, Immunoglobulin shots...
You can probably ask them for stuff like IV magnesium, growth hormone (if needed), vit. C drips, IV glutathione, Chlorestramine, etc. & they won't look at you like you just landed off of a UFO.
I had a very hard time getting a regular doctor in an alternative medicine facility to authorize a growth hormone test... when my results were off the chart low - she wouldn't prescribe growth hormone shots... I had no problem with this at the FFC.
Posted by Lymeorsomething (Member # 16359) on :
Yeah, sometimes it's good to play dumb and not plant seeds lol
Posted by bettyg (Member # 6147) on :
lymesomething! who is "playing"? what you see is what you get with me! Posted by Hoosiers51 (Member # 15759) on :
How do they treat viruses at these places?
Posted by seekhelp (Member # 15067) on :
Is it possible to get the test results out of this facility? If you go to Quest, can you get them to include another doctor on the results distribution list or will they only send them to the ordering physician(s)?
Do you recall approximately how many vials of blood they took when doing the initial testing?
I'm done buying supplements AT Dr's offices. I think of it as a conflict of interest. If the products aren't marked-up and it's something I truly want, I'll consider. I just see a trend that these vitamin pushers seem to recommend tons of stuff when they have it at the front counter.
Their follo-wup visits are quite costly compared to other holistic centers. The $395 charge is in line locally with similar centers, BUT the $200 follow-up visits surely are not. But, their fees are in line with most local LLMDs.
Honestly, they sound 10x more thorough than my LLMD when it comes to testing. That's a good thing, but if they don't recognize Lyme/co-infs, then it could be bad. From what you said Sparkle, they may have some value if you can afford it.
quote:Originally posted by sparkle7: I went to the one in CT. My doctor there was excellent but he has left. They have a deal with Quest & they have cheaper prices for lab work than if you get it yourself through another doctor (unless your doctor has a special deal, somehow).
At the time, I had been to many doctors in NJ. None of them had a clue about Lyme. You would think in NJ, they would know about this... I wasted 9+ years thinking I had fibromyalgia. So, the tests & diagnosis were worth it.
I spent a bundle @ the FFC. The drips, IV, shots & vitamins/supplements were not worth it in my opinion. You can do much better on your own over the internet or elsewhere.
You can tell them that you don't want any treatment until after the tests come back. This will save you money for stuff you may not need.
They don't mind if you get supplements from other places then them. They do overcharge for these things. You can buy them yourself over the internet.
The tests & consultation were worth it. They saved me another 10 years or more of going from doctor to doctor.
Many people here are very savvy. If you are knowledgeable - it may just be worthwhile to go there for all the tests they do. I've heard that some LLMDs don't do all of the testing.
We really need to know what we are fighting in addition to Lyme. The FFC is very thorough in assessing the viruses, bacteria, mycoplasmas, etc.
I can't believe they won't let them treat people with Lyme in many states... it's just unbelievable! One suggestion is to not say you have Lyme if you know you do - but would like to use their treatments/tests... Don't tell anyone I said this - LOL.
I also think they are good because they do a range of tests... if you went to separate doctors for all of this it would be more expensive - like endocrine function, bio-identical hormones (if you want them), compounded stuff like thyroid medication, neurotoxin tests & meds, IVs & drips, Immunoglobulin shots...
You can probably ask them for stuff like IV magnesium, growth hormone (if needed), vit. C drips, IV glutathione, Chlorestramine, etc. & they won't look at you like you just landed off of a UFO.
I had a very hard time getting a regular doctor in an alternative medicine facility to authorize a growth hormone test... when my results were off the chart low - she wouldn't prescribe growth hormone shots... I had no problem with this at the FFC.
Posted by KirstenS (Member # 15146) on :
Thank you Sparkle for starting this post. I have been going to the FFC for almost 2 yrs now. I started going as a last resort for my fibro and I was also hesitant due to the price.
But if I had not gone and found my dr. I would be in a very bad place right now. He sat and listened to my story and said after that he wanted to test me for lyme.
Finally, a Dr. that will test me and who's listening to me and giving me wonderful feedback. He was positive when I speak about how I feel I still have it.
the Dr sat and explained how your body works and how each hormone and organ feeds off one another and how important your levels must be for everything to work together.
Then he explained what happens when they don't.
The tests he took for me were extremely through. 24 viles of blood I think. I know so much now of what my body needs to make it work and heal.
With the lyme test he took it 2x's. He wanted to try and catch it in a cycle. Which he was able to and it showed him that I not only had chronic lyme but at the same time I was having active lyme.
The one test he took I feel saved my life. I was making a lot of blood clots and without finding this out I don't know what would have happened to me. My levels were over danger levels. They were at extreme levels.
As for the IV's, I don't get them. He has mentioned them and feels they would help but has never pushed them or tried to sell them.
I have never felt pushed into buying a product. They take their time with you.
But most of all, for me I know my Dr truly cares for my well being. At the times when I was completely depleated he has given me the support that has helped me understand you are very sick and this is not going to be easy but we are working on getting you better.
As you can see, I like my Dr!
[ 18. November 2008, 01:50 PM: Message edited by: KirstenS ]
Posted by karatelady (Member # 7854) on :
I started going to the FFC in Georgia 3 years ago. On my first visit, they took 23 vials of blood! They checked everything except viruses and bacteria on that visit.
They spend an hour with you on that initial visit instead of 15 minutes - that's one of the reason's they are higher. All other visits are 30 minutes long.
My second visit was the summary of the lab findings. It checked for adrenal dysfunction, thyroid - free T4, T3 and reverse T3, Progesterone, Testosterone, growth hormone, risk for blood coagulation defect, iron, high C-Reactive Protein, Abnormal lipid panel, insulin resistance, decreased natural killer cell activity, increased RNase-lactivity, Low Rbc folate, Low B12, High Homocysteine.
Their theory is to try to get a person stabilized before testing for lyme and bacteria (or that was their theory 3 years ago). I wasn't tested for lyme, co-infections, viruses for a couple of months but that may be different now. If I had to do it over, I would ask for the lyme testing right away. But I didn't even know what I had at that point.
They also use alternative supplements along with the abx. I started out with abx plus Samento, Cumanda and Burbur.
They are great about pain meds and don't treat you like you are crazy because you are in pain and need them to function.
I did the IV's for quite awhile since I was giving myself Heparin shots twice a day and had to have my liver checked every 3 weeks. So when I went in for my blood work, I did a viral IV.
After I finished the Heparin - 1-1/2 years later (and it helped a lot), I stopped the expensive IV's.
I now only go every 6 months. Last month was my visit and my doctor mentioned that she was going to the big lyme conference coming up.
I believe they stay under the umbrella of Fibromyalgia and Fatigue (just my opinion) as they list on my bill for insurance ~ Chronic Fatigue Sydrome, Myalgia & Myositis, Unspec Fibromyositis, Insomnia - no mention of lyme. And I was CDC positive.
I've never asked how they get long-term abx covered by insurance but my 6 months worth was covered. The only thing my insurance wouldn't cover was Igenex because "there's no lyme in Georgia." lol
At one time the FFC talked of starting IV abx at the office but I don't know if they are doing that or not. This last time I went in, there were people all over the place and they've added a new doctor. As I waited I overhead a lot of people talking about their lyme disease.
All in all, they helped me a lot. When they ask now if I want to do an IV, I just say no and they don't push it.
For the last 6 months or so, I've been going to a Naturopath and using the FFC for pain maintenance and occasional blood work.
They are expensive but for me, it was worth the initial diagnosis and I'm still using bioidentical hormones. Most of the supplements they offer you can get online cheaper.
I really like my doc and I'm sure it depends on the individual doctor/patient relationship. My doc has been very supportive of all I am doing with my ND also.
Hope this helps.
Sandy
Posted by sparkle7 (Member # 10397) on :
Seekhelp - re: Is it possible to get the test results out of this facility? If you go to Quest, can you get them to include another doctor on the results distribution list or will they only send them to the ordering physician(s)?
Yes! They actually recommend that you have a primary care physician. They act more like a consultant than a regular MD - even though they are MDs.
They tell you if you get the flu or need a GYN exam to go to your GYN or primary care physician. They just handle CFS or Fibro (or Lyme). They are specialists in that area - not primary care.
They prescribe drugs as well as supplements. They don't mind at all if you go elsewhere to get the supplements. I don't think you can get the IVs elsewhere but I'm not too sure how that works.
My doctor was very good & thorough. He really took time to explain everything to me & listen to me. I asked alot of questions & he didn't mind answering everything - even though my hour went over.
I think I probably had 30 or 40 blood tests over the few months I went there. I'd have to dig up my records to see what everything was.
I agree that you should get the Lyme test early if you think that is an issue. They do stretch it out a bit longer then necessary & give you IVs or shots that you may or may not need. It's not harmful but it does get expensive.
I think they are very aware of Lyme. They do have to abide by each state's rules but they are very aware of it. Maybe they are able to prescribe abx to people under the guise of CFS or Fibromyalgia?
Posted by mojo (Member # 9309) on :
My sister and I are victims of the FFC near us. We know of several more victims, as well. Someday they are going to kill someone. Depending on which clinic you go to they can be very dangerous and very expensive.
Everyone I know that went to our clinic was overdosed on T-3 and had super high heart rates. I was the only one out of our crowd that was diagnosed with Lyme although all six of us have it. And I was diagnosed because I read the Igenex test myself and questioned my "negative" result. (they do Quest first and then do Igenex if you are positive on Quest). I was both IgG and IgM positive but CDC negative.
My sister requested a Lyme test and although she spent $12,000 in just a few months they refused to order a test from Igenex because "she didn't have Lyme" Others had Igenex tests and were told they did not have Lyme and they are now with real Lyme doctors being treated.
I would really hesitate to use this facility - it's all about the money at this place.
Posted by seekhelp (Member # 15067) on :
$12k in a few months they charged? OMG, do the owners drive a Rolls Royce? Ridiculous. I'm so sorry to hear you and your friends / family were shafted. They did seem hungry to get patients in the door when I called just for information. There are better places in Michigan. PM me if anyone's interested.
quote:Originally posted by mojo: My sister and I are victims of the FFC near us. We know of several more victims, as well. Someday they are going to kill someone. Depending on which clinic you go to they can be very dangerous and very expensive.
Everyone I know that went to our clinic was overdosed on T-3 and had super high heart rates. I was the only one out of our crowd that was diagnosed with Lyme although all six of us have it. And I was diagnosed because I read the Igenex test myself and questioned my "negative" result. (they do Quest first and then do Igenex if you are positive on Quest). I was both IgG and IgM positive but CDC negative.
My sister requested a Lyme test and although she spent $12,000 in just a few months they refused to order a test from Igenex because "she didn't have Lyme" Others had Igenex tests and were told they did not have Lyme and they are now with real Lyme doctors being treated.
I would really hesitate to use this facility - it's all about the money at this place.
Posted by hshbmom (Member # 9478) on :
In Oct. 2006 the FFC in Marietta, Georgia would submit a Lyme Western Blot test to Igenex, but would not treat with antibiotics.
They would give intravenous or intramuscular injections of supplements, such as vitamins and minerals.
Please check with the office manager to see what they currently offer.
Posted by sparkle7 (Member # 10397) on :
I agree they not not inexpensive!
It's just that if I never went there, I would probably still think I had fibromyalgia. Maybe since it was in CT, they were more adept at diagnosing Lyme? My doctor was very nice & helpful.
I am in NJ, now, & I heard that the local LLMD charges $700 a first visit - not including any tests. I have also heard of & been to "famous" doctors who didn't have a clue about Lyme or all the other factors that can contribute to ill health with Lyme - like viruses, Herpes, EBV, mycoplasmas, etc. & spent thousands on treatments that I didn't need.
I have heard that some people have gone to LLMDs & have never been tested for Herpes, mycoplasmas, EBV, etc.
As they are the "Fibromyalgia & Fatigue" Center - they are not necessarily treating Lyme... I guess it's hit or miss when it comes to them.
They may be helpful to some but they do cost megabucks... I was happy to know that I was dealing with Lyme rather then some non-specific illness... even though the treatment is much harder for Lyme than I expected.
I also feel confident I can rule out some of the other factors like mycoplasmas, Herpes, EBV, etc. since I was tested for these issues there (excluding the fact that some tests may be inaccurate).
Nothing is easy with Lyme...
Posted by karatelady (Member # 7854) on :
I wanted to pull this back up because it was stated above that the FFC in Marietta, GA does not treat with abx for lyme disease.
This morning I made my 6 month appointment with them and talked to the head nurse. I remembered this thread so I asked why they were not treating with abx anymore.
She was a little taken aback and said, yes, they are still treating with abx. So I wanted to set the record straight in case anyone is thinking of going.
Sandy
Posted by randibear (Member # 11290) on :
i have a friend who goes to one in either dallas or fort worth. i am absolutely positive she has lyme.
she's the one that's on oxcy, meth, i don't know what all....i mean heavy heavy painkillers but no antibiotics.
i've asked her to get tested but she says these people know what they're doing and she has fibro.
i gave up, but i don't trust them and think they're doing her wrong.
Posted by karatelady (Member # 7854) on :
They didn't test me right away. They put me on immune builders for a couple of months after they did my labs - 23 vials worth.
After that they did a hypercoagulation test and I was put on Heparin for over a year.
After about 2 months though, they tested through Igenex for lyme. They also tested using Quest CMV, EBV, C. Pneumonia, etc.
On my insurance forms, they never used a lyme disagnosis but used insomnia, Myalgia & Myositis, Unspecific Fibromyositis NOS, Pituitary Dysfunction, Adrenal insufficiency - all the things I did have and my insurance would cover.
My insurance wouldn't cover my POSITIVE lyme test because they said, "There's no lyme in Georgia."
I think they are doing her wrong too if they don't test her for lyme. I thought they had a standard protocol at all the FFC clinics.
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