FFC information

Discussion in 'Fibromyalgia Main Forum' started by LouiseK, May 8, 2006.

  1. LouiseK

    LouiseK New Member

    Hello all,

    I would love to hear what treatments/effects any of you have had who go to the Fibromyaliga and Fatigue Centers. I went once but chickened out on taking the (scary seeming) medications they prescribed but want to go back now as I have gotten even sicker and perhaps braver about ingesting a bunch of stuff.

    Would love to hear what they have done that has or has not worked for you.

  2. findmind

    findmind New Member

    Sweetie, just put FFC in the search box by Topic and GO...

    Don't try to read it all at once LOL...

    You'll get tons of info, more than you ever wanted no doubt....

    Good luck if you go to FFC...I think they are the best USA has to offer right now...

  3. intensemom

    intensemom New Member

    I know just how you feel. I felt the same way...but I do not regret even a little bit going to the FFC!!!! It was the best thing I ever did for myself!!!

    Keep in mind that everyone is different. Stick with it...you may feel worse before you get better....and it may take some time....so be patient. Good Luck and be sure to keep us all posted of your progress!!

    Stay Positive,
  4. hopeful4

    hopeful4 New Member

    Hi Louise,
    I've been going since last year. They have done for me what no other doctors have been able to in six years: diagnose me properly, get to the bottom of my illnesses, and treat me. Wow.

    They found I had mycoplasma pneuomoniae, candida, echovirus, hypo-thyroid, low hormone levels, low NK cells, and the big one: Lyme Disease.

    I'm curious about what the testing you had done revealed. Also, what "seemingly scary" medications did they suggest you take?

    There have been medications I tried from them that did not work out for me and I stopped taking them. There have been others I decided to not take. We worked these decisions out by communicating and discussing them.

    When I started a new medication, or supplement, I started one at a time, for several days. That way, if I had a reaction, I would know which medication it was.

    I still have a long way to go, and the lyme treatment is not a picnic. But, at least, I have a fighting chance now to recover.

    If you are inclined to go back, bring up your concerns about the "scary" medications, and become a partner with your doctor in your treatment.

    Best wishes,
  5. LouiseK

    LouiseK New Member

    Thank you so much for your responses. I will look through the old postings. To answer the question about what they gave me to take it was something for Parkinson's disease (Mirapex) and cortisol. They did no testing but asked me to bring in what I had on the next visit and asked me to have my regular MD test a couple of things which, of course, her lab couldn't even do . . like serotonin.

    There are "scary" side-effects to taking these things -- and I don't mean how they might make you feel in the short-term but rather what they may be doing in the long-term, under the radar. For instance, taking cortisol will cause your body to stop making it's own (like taking thyroid). Also, there are domino effects to every chemical change we make in the body. You see what I mean. I'm not sure one can just take this and that and then just stop taking it and things will just pop back to their original condition.

    I feel like I'm in hell with this! It's been two years; only two years. It's getting harder and harder to picture multiplying what I've been through with this (the illness itself, money problems, work problems, you all know . . .)and multiplying it by 10 or 20!

    Thanks for you support.

  6. ldbgcoleman

    ldbgcoleman New Member

    First thay do not make you take anything you don't want to. If you have a problem with something there is often another alternatice. I took tincture of licorice instad of cortisol which made me break out.

    Second you are not on most of the things forever. i am in maintnence now and I still take fatigued to fantastic drink, fish oil, transfer factor, miyake mushroom and Vtimin B12. For RX I still take thyroid, ambien and Zithromax. The only reason I am still taking antibiotics is the doxy didn't work on my mycoplasma. I expect to get off of the zithromax when I have that problem solved.

    I think that there are plenty of healthy people taking a multivitimin and fish oil for good health. I have gone from collapsing most days by 2 or 3 to going and feeling good almost every day until night time when I should be tired.

    You can go slow and aks your Dr anything you need to and research everything they ask you to take before you buy it. Thats what I did. I found very few side effects or long term side effects with most things I researched.

    I know all this is very scary but it seems to me it is scarier to never get better or to get worse. Lynn
  7. jane32

    jane32 New Member

    what type of fish oil are you taking?

    Louise I have seen a slow improvement sicne I have started. I still get nervouse taking new things but I do add one at a time and I tell him point blank if I do nto want to take something. You are the one in control for me the risks outweigh everything else b/c I want to get better.

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