To FFC or Not to FFC? I Don't Think I'm Rich Enough

Discussion in 'Fibromyalgia Main Forum' started by chaps, Jun 17, 2008.

  1. chaps

    chaps New Member

    Some of you know I've been posting on this board once in a while over the course of well over a year. I've been having symptoms that can be Lyme, FM or CFS. I've been through all kinds of medical diagnosis.

    Since I do have pain in my knees, hips, shoulders, and most recently, the knuckle on one of my fingers I'm thinking there's a chance it could be Lyme, even though I live in Florida. Someone on this board recommended that I have Igenex labs test me for Lyme. I called, got the kit and have the forms to give to my doctor to request the test. The test costs in excess of $400, depending on which or how many tests they do.

    Then, I received some literature from the FFC (Fibro and Fatigue Center)in Atlanta. They said that if I went to them, on the first visit, they'd order extensive bloowork and the Lyme test would be included. So I figured, why should I have Igenex do the Lyme test and if it's negative, then I'm only going to go to FFC and pay for the same test again included in their battery of tests.

    When I talked to the FFC on the phone, (or should I say, their representative at the call center in India) they tell me that their "package" for people who have to travel quite a distance to see them costs $1300 for the initial visit and two remote follow-ups. They won't tell me how much the bloodwork that they will order is going to cost. And they don't divulge how much the treatment or supplements, drugs, whatever they recommend will cost. I understand that different cases require different things but they should at least give a range of what it could cost. Since this stuff is not covered under insurance, I don't have the big bucks that this will likely require.

    I also have my doubts about the FFC too, because from what I've seen and heard from them, they seem more concerned with milking me as a cash cow rather than helping me. They have all kinds of fancy marketing materials, complete with a call center in India so they don't have to pay Americans their modest call center wages so that the fat cat (and this case, it's literal) at the top of the organization can get richer. One of the people at the call center (disguising herself with an American name) even called me today to try and ramrod me into making an appointment. Can you believe it? SALES PRESSURE from a health care facility! It really turns me off that they are so eager to get me to commit to spending a fortune with them, yet they don't want to answer my questions or give me any idea of how much that fortune might be.

    There's a Homeopath in my area who thinks he can help me. So I'm wondering do I get the Igenex Lyme test and narrow it down and let the Homeopath take it from there, or do I sell my house in order to go to the FFC?

    Has anyone here been to the FFC? Was it as expensive as I'm envisioning, and most importantly of all, did it help? What can I expect it to cost?

    Are facilities like this regulated? Who holds them accountable? Without regulation, it is rife with potential for them to be a big ripoff organization that exploits people who are vulnerable and desperate to feel better and be well.

  2. spacee

    spacee Member

    Personally, (but I am no doc) I would go with the homeopath. BTW where do you live and can I have his name??? Sorta kidding but I am beginning to get greatly annoyed at having to be my doc's research assistant. Even for my son's tinea vericolor. I had to print out the meds that were prescribed to treat it and that show him that the diflucan that he had been using for several years was NOT one of them. (rolling my eyes).

    I had heard good things about the woman doc at the FFC in Atlanta but sounds like things have changed. Your description did crack me true.

    I have had the IGENex. It was negative. Yet deeply hidden within the 4 pages they did mention that some of the bands were indeterminate and could be repeated in 6 weeks...more money. My sis who is a medical technologist found that part, my pcp didn't. But why would he since negative was written in two places in large print on the cover page.

    I feel for you...don't sell the house.

  3. msbsgblue

    msbsgblue Member

    After those initial visits she was plunking out $500. or more each time, 2 times a week sometimes

    Her insurance would not cover it.

    They had her on so much stuff that she sounded out of it when I called her.

    She lost so much weight from getting so sick from it that she looked like death warmed over.
  4. Slayadragon

    Slayadragon New Member

    I know that a lot of people here recommend that IGeneX test, but I'm not convinced that it's that important.

    There are lots of symptom lists that you can look at to see if you're a match. A lot of LLMD's make diagnoses based on symptoms rather than the IGeneX test anyway.

    If you've got a lot of weird symptoms (total dysfunction, burning skin, high or low body temperature, etc.), I would suspect a co-infection like babesia. Those actually are parasites rather than bacteria, and can be very severe. (They're much more similar to malaria than most classic CFS symptoms.) If I had anything like that, I'd read as much about babesia/etc. as possible. (There's at least one book on that, written by a guy named Dr. Schaller.) Then I'd get to a good LLMD as fast as I could. Those seem nothing to screw around with.

    If your symptoms are more modest and CFS-like, I'd suspect just regular lyme (without co-infections). It's my strong belief that most CFS sufferers have lyme as one of their many infections. Dr. Cheney says that it does well in the relatively anaerobic environments of our bodies, and our defective immune systems don't do well at handling it.

    Other than symptom analysis, the easiest way to find out how severe your problem is seems to be just to try treating it to find out. If you take a short course of doxycyline, minocycline, zitro or similar, you can gauge your herx reaction. If it's strong, you may want to consider (again) an LLMD. Most regular doctors won't be inclined to give you a long course of antibiotics (which you may or may not need....there's disagreement on that), but a lot of them will give you a short course.

    I've not been to an FFC, but their reputation here on the board is as being really terrible at treating lyme.

    Unfortunately, there aren't a lot of doctors who take a broad-spectrum approach with regard to CFS. I am crazy about my own doctor (as are all of the other patients of his that I've encountered), but he's not cheap either.
  5. PVLady

    PVLady New Member

    FFC is fine if money is no issue. You may or may not be helped. It sounds like you have already made up your mind...

    Recently with my regular family doctor she ran tests for Epstein Barr and many other things and the bill was $3,500.!

    Nothing is inexpensive these days.

    [This Message was Edited on 06/17/2008]
  6. SGR

    SGR New Member

    Well, I'm a patient of FFC Portland, OR and I think they have been great. I am not resolved, but I am MUCH better than when I first went to see them. I believe I pay $199 for the office visit when I go, so I don't understand the package deal figure and given that they spend an hour with me, it's a darn good price. The labs are covered by my insurance, so I don't know what they cost. I found the initial tests to be very helpful and they have been the only real source of information I have about what my body has been through. They have never forced any treatment on me, they have listened to me when I have asked for treatments they haven't thought of first. There have been many things I have declined, some of them stupidly so, but I eventually figure out the wisdom. I don't think their lyme test is full spectrum enough to say with certainty, but it sounds like there are doubters about Igenx. So I would recommend going, but I would pay very close attention to all the costs involved and decide each purchase individually. People on this board can give you feedback about what we have done or used that has been helpful. The bad news is you are going to have to be your own expert, you're going to have to decide what you think will be helpful. It really stinks especially since part of this DD is brainfog for crying outloud. I am not located near any of the pioneers in this field, so I have not found any other doctor in my part of the world that has as good an understanding of our biology - and sadly even that understanding is incomplete. Best of luck to you.

  7. wanderingbluedragon

    wanderingbluedragon New Member

    I just wanted to ask if they have tested you for anything else? It could be Rhuematoid Arthritis, Lupus, etc. My doc thinks I have a connective tissue disorder but that they haven't figured out which one it is yet. It's not RA or Lupus but there are many others. Anyway, just a thought.

  8. marti_zavala

    marti_zavala Member

    Grammy - that was a very helpful post for me. Thanks.

    Chaps - I don't think anyone has all the answers so I don't think you are going to do any better than a very very good local doctor, unless you are going for the paper trail for disability, in which case, by the time you add up all the copays for local docs, you may as well have gone to a place like FFC to get the testing done. (You mostly have to beg for testing to be done, even at the good docs offices, in my experience).

    I would try contact an FFC office by going to the number on the website. You may get a different feel for them.

    I wouldn't put my home at risk for their care, I think you could do just as well or better with a functional medicine doc or naturopath or homepathic doc. Less testing but you could be feeling better sooner.


    LISALOO New Member

    I think it depends on your insurance. Mine covered 80% of quest tests after my deductable. Still cam eup to about 4000 after insurance. Just for labs. They paid 40% of my appointments.

    I think it was good for me to get my tests done for all the viruses, but after that, not helpful at all. Thousands in apts and pushing me on hormones I didn't need (and I'm still reeling from). I also got worse.
  10. gapsych

    gapsych New Member

    "have pain in my knees, hips, shoulders, and most recently, the knuckle on one of my fingers"

    There could be a myriad of things causing these symptoms. To me and I am not a medical doctor, it sounds like something a rheumatologist might want to take a look at.

    While, I would not rule out Lyme, and not to diminish the pain and suffering it causes, do not stop there. We are not doctor's and therefore can not diagnose from these few symptoms.

    If you are worried about Lymes and want more information, I would suggest posting this on the Lymes board. They have valuable information there.

    Have you been to your regular doctor about the new symptoms? You might want to try this if the doctor has been seeing you for a while and is familiar with your history. Then if you need a rheumatologist he/she can get you a referal.

    If you go to the FFC, I assume they would have a rheumy there.

    Not an easy decision.

    Unfortunately, as another person stated above, sometimes we have to do our research.

    Take care, GA

    [This Message was Edited on 06/18/2008]
  11. chaps

    chaps New Member

    Thanks for all of your collective inputs.

    To answer a few of the questions, I spent a few months going to the Cleveland Clinic in Weston, FL. The 11 "specialists" that I saw there included a rheumatologist, infectious disease specialist, and a neurologist. None of them felt that I had a problem that was within their respective baileywicks. I know a good doctor when I see one and unfortunately, the docs that I saw at Cleveland Clinic seemed to be either too young and inexperienced or just unaccomplished flunkies/hacks. The original Cleveland Clinic in Ohio has a great reputation, but don't forget--this is Florida, where all the worst of the worst of the construction and medical professions seem to flock like Canadian geese. Exceptions are very rare. One of the docs there told me flat out that there aren't any special standards or criteria for landing a gig at the Cleveland Clinic in FL. Basically anyone can work there providing they haven't been sued a dozen times already.

    I feel in my gut that I have either CFS, FibroM, or Lyme, or maybe either of the former two with a "twist" of Lyme.

    I went to a holistic guy about 8 mo. ago. He took all of my symptoms (and I was very deliberate about pinpointing all of the symptoms, leaving none out) and entered them into a software program that correlates them to diseases and comes up with a list of possibilities. Lyme was one of them. Systemic candida was another. Candida was ruled out with urine and blood tests performed by a specialized lab in Miami. A Western Blot was done by Quest labs and it came back negative.

    I was talking to a friend of mine who lives in Connecticut and he said he had Lyme for two years. His Western Blots came back negative and he later had the Igenex test done and came back positive. He's been treated and is fine now.

    I've lived in Florida for quite some time and my primary care physician is very doubtful about Lyme because we supposedly don't have deer ticks here. But before I came down with all of this, I did lots of fishing in a lake near my house and could have been bitten by a variety of other bugs that might have been carriers.

    My case doesn't seem to be that severe in comparison to those I read about on this forum. My heart goes out to those who are nearly bedridden with this. I work 40 hours a week and my employer doesn't have a clue that I'm sick. Physically, I feel about 70-80% of my old self on good days, but on bad days, it's more like 50%. I don't usually have good or bad individual days, it seems to run in weeks, I have good weeks and bad weeks. I am determined to get well and beat this thing. But I don't think my will can do it alone.

    My symptoms have sort of changed over time. At the onset, they were:

    Interrupted Sleep
    Tingling in fingers and toes, mostly left side
    Mild headaches, I called it a head-buzz
    Muscle weakness/sluggishness particularly noticeable in throat and forearms
    Muscle pain in lower back, particularly where I experienced torn muscle about 15 yrs ago.

    These symptoms felt primarily neurological at the onset. I feared it was MS, but an MRI showed negative.

    Today, my symptoms seem more neuromuscular and joint related, including:

    Not as much shakiness
    Very sluggish muscles all over upon waking in A.M.
    Still feel fatigued
    Not so much tingling in fingers and toes anymore
    Sleep is better. I sleep through the night 70% of the time.
    Knees sometimes feel sore without provocation
    Left hip is often sore
    Shoulders have gotten sore and I don't recall straining them with activity.
    Knuckle in middle finger of right hand feels sprained, but I don't recall spraining it and it's felt this way for at least 3 weeks.

    It's the recent joint pain that has me thinking about Lyme again.

    I'm going to read all your posts again before coming up with a game plan. Maybe FFC is not the answer.

    Thanks again for the input.
    [This Message was Edited on 06/18/2008]
  12. spacee

    spacee Member

    I agree with you. Florida docs are the worst of the worst. I have heard that it is because good docs don't want to come here because of the malpractice suits are ridiculous.

    Have you tried contacting Lyme support groups in Florida to see if they can recommend LLMD docs here. I just googled Lyme Support Groups Florida and it brought up some sites.

    To me, having had CFS for 22 years. Your symptoms don't seem to meet the CDC criteria. I could be wrong. I have read Mayo's CFS criteria a couple of times recently and your symptoms seem "off".

    Now, my twin went to see Dr. Cheney years ago when she got sick. He told her that she was missing part of the CFS "constellation" of symptoms. But we think that she did have it cause I had it...we think she caught it from me.
    She had swollen lymph nodes, insommia from hell, ran a fever but didn't have any cognitive issues. That is what Cheney said was missing.

    She continued to work (hiring out all the jobs around the house) and after some very horrible years, pulled out of it.

    That is our story but contacting some Lyme support groups might shed some light on your situation.

  13. chaps

    chaps New Member

    I didn't mention that at the very onset of my illness, I had a day or two of flu-like symptoms, chills, possible fever, unsettled stomach and the dizziness. Then I had two days of extreme fatigue right after that. After those two days, I felt kind of "punk" for a couple of months. Then in December of '06, that's when I started having the neurological symptoms.

    I do get swollen lymph nodes from time to time. I have also shared on this forum before that when I have a herpes outbreak, I feel much better. Some have theorized that when my body raises the antibodies to fight the herpes, the same antibodies attack whatever is causing the other symptoms. I haven't had a herpes outbreak in a quite a while now. I was taking the supplement L-Carnitine, which is supposed to help if you have CFS, but it was actually causing my herpes outbreaks. Once I stopped taking the L-Carnitine, no more outbreaks. L-Arginine has the same effect.

    But you're right, I don't have the cognitive disorders. I seem to function fine at work and I seem to have better factual recall than plenty of people whom are well.