FFC's: Have they Helped, Done nothing 4 u, or made you Worse???

Discussion in 'Fibromyalgia Main Forum' started by suexi, Dec 20, 2006.

  1. suexi

    suexi New Member

    I'm curious about FFC's. I have recently made an appointment but a part of me feels a little skeptical. My appt is for jan. then i follow up 2 to 4 weeks later; then see them every 3 to 6 months thereafter. They said if i have problems w/the medicine that naturally i call and they would just change or adjust it for me. It just sounds too easy. It seems that a good doctor needs to see you regularly,and monitor you carefully and give you strict guidelines but then again Maybe I'm Wrong. Maybe im missing something here. So im just curious could anyone please let me know of their experiences and opinions.
    oh, btw WHICH ONE did you go to AND what illness do you have??? I have CFS and just recently diagnosed w/lyme (5 years of hell).
    thank you
    susan

    [This Message was Edited on 12/20/2006]
    [This Message was Edited on 12/20/2006]
    [This Message was Edited on 12/21/2006]
  2. Slayadragon

    Slayadragon New Member

    My impression with the FFC's (based on reading this board) is that if you're going to use them, you need to be super-educated yourself.

    Think of yourself as the doctor, and the FFC's as a place to get suggestions, prescriptions and lab tests.

    If you do that, you'll probably do okay. If you put your trust in them, there seems an extremely high chance that you'll have some sort of disaster at some point along the way.

    Which is not to say that they're not useful. If I didn't have a really, really good doctor, I'd use them myself.

    And even though my doctor is good, I still play just as big a role in my healthcare as I would with the FFC. I don't think there's any way to get around it with CFS.

    If you post to the board what the FFC has recommended, you'll get lots of feedback. They seem to recommend just a few treatments to everybody, and so undoubtedly there will be people here who have experience with anything that they suggest you try.

    I would lay off buying the supplements or drugs until you confer here, btw. It seems like they prescribe a lot of stuff at once and that their supplements are expensive, and there's certainly no sense in spending a lot of money on stuff that you're not going to use.

    Hopefully others will give you their own personal experiences, of course.
  3. suexi

    suexi New Member

    VERY INTERESTING POINT....you sound like a very smart person. That's good to know NOT to put ALL my trust in them, to get knowlegeable and become my "own doctor".

    I, myself am doing just that at this time: Getting All the information on my illness insofar as what i feel that i need to do for it. Knowledge is def power with this kind of illness.

    Thank you for the feedback. It's interesting that they "recommend many things"... That makes soo much sense being that it is "CFS".. I feel that even KNOWING that I have lyme is still basically the same. It's just a matter of trying different things: There's no one set treatment for it. Everyone is different and it's all about hoping that they, (whoever it may be, FFC, Dr.) gets the right treatment for YOU. The odd thing to me is I wonder why All these places, including FFC's say "we have a 98% rate. I have heard that so much that i let it go in one ear and out the other.
    ty again
    susan
    [This Message was Edited on 12/20/2006]
  4. grace54

    grace54 New Member

    Wow some educated people here. I agree with all that was said.My experience was a bit overwhelming and I told my DR. at the clinic that. I suggested they warn people with limited funds what to expect to pay including injections, supplements etc.

    There is so much information at the first visit I wouldn't go alone if I could help it. They are very good at what they do but they are still learning I believe. They kept looking for a big sudden change in my condition and I felt discouraged when it didn't happen. Some of us see substantial changes in a short period, I have taken longer about 6 months to see some improvement and I'm not sure what has helped yet but will report back when I do.

    I decided to give it a year and do what they asked as I have been sick about 6 years so thats not much to ask. Patience and good support like coming on here so you don't get too discouraged. Good health to all
  5. PVLady

    PVLady New Member

    If you are in to supplements, you might do fine. I went and had all the blood work, and purchased the recommended supplements which I could not take. I've had alot of digestive problems.

    If my digestion keeps getting better, I may try some of the supplements but at this point, I am scheduled to see Dr. John Chia in early January.

    He is infectious disease specialist in Torrance CA who has researched and treated fibro and CFS for over 10 years. The other doctors in town really respect him and refer alot of patients.

    I spent alot of money at FFC - over $1,000. but I (like many here) am desperate to get better.

    Personally, I would try to see Dr. Chia. In order to get an appt. your doctor has to fax a copy of your medical records. It is a little drive for you, but he is excellent.

    It takes about 3 months to get the appt with Dr. Chia. Also, there is a very good primary doctor for fibro and CFS in Torrance - her name is Dr. Evelyn Dowell.

    She was recently on a panel discussion sponsored by Torrance Memorial along with Dr. Chia - discussing fibro and CFS. She is very knowledgable.


    [This Message was Edited on 12/20/2006]
  6. suexi

    suexi New Member

    hi....btw, i did call Dr. chia...The only problem is that he doesnt diagnose or treat lyme or else i would have went to him. Many docs don't. At the FFC they don't test for it unless they think you might have it. Another reason why im skeptical. hmmmmm, makes me wonder if they would have tested me if I didn't already know that I have it.

    Thank you for all this great advice...hope to get MORE!! :)
    Being on this board is great! Im sure i will save thousands, plus time & effort due to all this great advice. Plus the fact that Im def getting more educated. I'm still learning more so if I do wind up going, I know to tell them what's best For ME & to buy supps off the internet.
    Whew!!!! All this reading, research and THINKING!!! I'm BUSHED..
    susan
  7. dahopper

    dahopper New Member

    My doctor at FFC is treating my Lyme very aggresivly and I am really pleased with him. Infact very pleased with my over all treatment through FFC. I feel like it was a God sent that I found them. I had no plan or treatment before them, I have so much hope now. I wish I could post more but can't at the moment. Good luck Love, Debbie