My Not Good FFC Experience

Discussion in 'Fibromyalgia Main Forum' started by livin4him, Sep 12, 2006.

  1. livin4him

    livin4him New Member

    For anyone interested, just wanted to share my not good experience with the FFC. Just keep in mind they are all not the same, each one has different doctors. If you are too tired, just skip to the bottom for the summary.

    I have CFIDS/FMS/MPS, have been sick for 12 years. Last 6 have been progressively getting worse with CFIDS. Disabled. I'm Housebound I live in Birmingham. It is a 4 hour trip one way to FFC.

    I went to FFC as a last resort. My goals were to get the labwork needed. My expectations and hopes were high.

    Started in 10/05 with the Atlanta FFC, Dr. Bullington. I had to drive myself each time I went so it is extremely hard for me to go. It takes me about 1-2 weeks to even get over the trip.

    I recorded each appt.

    My first appt. when I went in I felt like I was out of place with no makeup or hair done. I don't ever have the energy. So this kind of tipped me off that these people probably have not been sick that long.

    During the appt. I realized that I knew more than she did about most of it. My hopes were deflated and it just went downhill from there. She did not get a complete picture of my history. I took my medical records and gave them to the nurse before the appt. so that she could copy them. When the appt. was over, she said oh can you just leave them with us and get them next time. (The audacity) No, thank you. I took them with me and was never asked for them again.

    But, I was getting the labwork done and that was my goal. However, to me it's all a rip-off because they keep you coming back to get more labwork instead of doing the tests all at one time.

    She wanted me to get the "creamed corn" iv and the energy shot which I did. Boy, that lady did not know what she was doing. It killed me. She just said it is usually worse the longer you have been sick. Hello? Finally, she gave me some lidocaine but it was still killing me. I did not feel very taken care of and when you are really, really sick it becomes very discouraging. I was really sick going home.

    She prescribed a ton of supplements on me with a ton of compounded prescriptions. Needless to say when I got home and tried to follow her protocol I got deathly sick. So, I adjusted it by myself and was still really nauseous on alot of it. So, I called and asked about what to do about the nausea. The "nurse" told me that I would have to wait until my next appt. to discuss that with Dr. B. I said no, I need to know what to do. She said okay just stop taking whatever is making you nauseous.

    I couldn't believe it, the audacity these people have. So, I just did the adjustments myself.

    Then I went back for the results from the "first labworks". She went over all of that with me. This was the most helpful thing so far, so that I could actually see the results. They were not good at all. Now at this time, they could have ran the other bloodwork for the infections, but they did not.

    Then I got really, really sick with with my gallbladder, colon, everything. Had all those scopes done. Then got worse, went to internist, heart doctor, lung doctor - none of them caught it. Thought I was going to kick the bucket for sure. Went to an urgent care place and the doctor (thank God) ran bloodwork - mycoplasmas. So, went on antibiotics then that was about 5 months ago.

    Finally was able to go back to FFC for my 3rd appt. last week. I thought it was going to be an hour. Turns out it was just 30 minutes. During this appt. I was sighing as usual because of fatigue and she said do you have a headache? Oh, these people. I said no I'm exhausted.

    She comes in 15 minutes late. And at the end of our appt. (30 minutes later), she said okay gotta run, I'm late for next appt. but we ran over because you haven't been here in so long. (yeah, right).

    They drew blood for the infections finally and now I have to go back to get the results. More money for their pockets.

    While I was there I got the blood drawn for the lyme and put it on hold at Igenex. Wanted really to see what other tests show before having to spend another $190. out of pocket for the lyme if I am gonna be on antis anyway.

    Anyway, during these appts and calling the nurse, they are clueless and their best response is you will have to wait until your next appt. I never felt like I was being taken care of.

    However, I did get the bloodwork done finally that I need. If I can just get all that then I can work with other doctors that are covered under my insurance to try and get better.

    SUMMARY, In my opininon:

    Pros: Will run all the labwork needed
    (not all at once though).
    Will prescribe medication.
    Probably would help if not too sick.

    Cons: Have one treatment mindset.
    Very expensive.
    Favorite Line: You will have to wait until you come back for your next appointment for that. In other words we need another $185.00 from you before we can answer that question.
    Not very experienced with fatigue.

  2. Shannonsparkles

    Shannonsparkles New Member

    I got much sicker on the program. I reacted badly to the suppliments. They told me to come off everything. There wasn't anything more they could do for me.

    I am trying to work with local doctors who I can afford, and to go slowly.
  3. TXFMmom

    TXFMmom New Member

    I got the impression that they intentionally just run half the lab work, so they can get you back, and then run the other half, and get you back, so they can give you IV's each time.

    The IV I received HURT, AND I AM NO WEAKLING, and the thing hurt in my hand and arm, got an ice pack, then it made me viciously ill, as in nauseous and vomiting, and it was 1:00 p.m., NPO for the labs and still vomiting bile, and started shaking like a leaf, and I was NOT IMPRESSED WITH THEIR NURSING CARE.

    Then, when I refused the IV's the next time because they would not tell me what was in them, WE HAD A SERIOUS DISAGREEMENT.
  4. sleepyinlalaland

    sleepyinlalaland New Member

    what's in the IV's?


    I had cautious hopes for these centers, but if that is their usual stance, I have no more hope of their credibility....even though I understand that they have been helpful on some level with many.
  5. auntyemnga

    auntyemnga New Member

    I'm sorry you had a bad experience with the Atlanta FFC. I also had started the Atlanta FFC in Oct 05 but quit going in Jan06. They had messed up hormones something bad.

    I started going to a board certified Internal Medicine physician located in Conyers, GA. He uses an alternative treatment called Field Control Therapy. It's a slow process but I am feeling better but not 100% yet.

    The FFC had diagnosed me with CFS and FM. The new doctor also diagnosed me with high mercury toxicity.

    If you think you could make the drive over to Conyers (approx 30 miles east of Atlanta), I feel it would well be worth it. You can go look at some of my previous posts to read more about it. You would need to make the trip about every 2 - 3 weeks.

    Another option would be to travel to New York and see the doctor who actually developed FCT. You only need to see him once to be tested and then it's just a matter of sending him a urine sample. My doctor is not to that point yet, he's only been practicing FCT for a year.

    You would also need to follow the Candida Yeast diet. Please read some of my FCT posts and see if it's something you might want to do.

    Good Luck,
  6. livin4him

    livin4him New Member

    Everyone here is so understanding, I often forget how it is, because I have been too sick too even post lately.

    Right now, I think my best bet will be to go ahead and go back to get the last results. She said she could do it over the phone, but I am not comfortable with that. I am going to have to do a little research to see if anyone else has had success with the phone appointments.

    One of my major things I am fighting right now are the mycoplasmas. I was diagnosed by a urgent care place here at home and have been on doxycycline for about 5 months now. So, I'm now wondering, although she did not say anything if that will affect my lab results from the infectious panel. I have the lyme test on hold right now until I actually get that confirmation back from her that it will not.

    I have debated on whether to spend the out of pocket money for the lyme, but everything I have read says that it will be worth it.

    I am just really tired. These mycoplasmas make you feel deathly ill, esp. antibiotics and yeast, etc. yadda, yadda.

    Anyway thanks guys. Good health to everyone.

    ANNXYZ New Member

    Mycoplasma is a frequent co-infection of lyme disease .

    I really would be CERTAIN to get an igenex labs lyme test .

    I was ill with a myco infection and was later in shock to find that I also had lyme disease .
  8. JolieLuLu

    JolieLuLu New Member

    Because the total volume of blood drawn is 250cc. That is the equivelant of donating a pint of blood. If more blood were taken health risks would cetainly be involved and of course liability.

    It takes 30 days for red blood cells to regenerate. As sick as we are, taking blood cn be quite an ordeal. It took me a few weeks to not feel faint after my bloodwork.

    Im sorry you were treated this way. I am shocked that the FFC centers are so different. The one in Philly is good.

    Love and Light,
  9. mollystwin

    mollystwin New Member

    So unfair!!! I have never been treated this way at Detroit FFC. Except that they were a bit agressive with the hormonal treatment but we worked it out together.

    I am treated like family at the Detroit FFC. I get a return phone call the same day I call in with a question. They actually tell me to call in sometimes to tell them how I am doing in between dr appts.

    Your experience sounds more like a traditional dr office! I would not put up with that type of treatment after spending so much $$$$.

    They also had me start my supplements slowly, one new one every 3 to 5 days so that if I had a reaction, I would know what caused it.

    [This Message was Edited on 09/16/2006]
    [This Message was Edited on 09/16/2006]

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