Discussion in 'Fibromyalgia Main Forum' started by lilbird, Jan 25, 2006.

  1. lilbird

    lilbird New Member

    We keep missing each other. I haven't been on much lately. How are you doing? Are you having any luck with the FFC?

  2. june-bug

    june-bug New Member

    Hello friend! I havent been on much either. I'm rethinking the FFC. Im too sensitive to side effects to try all of these meds they want me on. Their IV made me sick for over a week, the coQ10 which seems so safe made my abnormal nerve sensations worse, and Im scared that they are wrong about the hormones I need. He wants me on Cortisol/aldosterone. That is the hormone that makes you fat and can bloat you I have trouble losing weight already. Also testosterone, progesterone and T3. I havent tried them yet, I have them. Also, the tests they run actually are all normal results but they use their own reference range. Dr. Drier and the therapist(MFT) I see who also has fibromyalgia are urging me not to go this route. He did a lyme test which came out negative and wants to retest with the IGENIX test. I took one of those before when I saw Dr. Kremmer in 2003 and mailed it to him. that one was positive IGM and Neg. IGG but Dr. Kremmer used it to diagnose me as positive a year and a half ago. He said I tested positive for babesia, though , another tic disease and I have almost all of those viruses positive. Epstein barr, candida, cytomegala, HHv6, chlamidia pneumonia, parvovirus, and more I think. He said I have twice the viral load of any client theyve had yet. He wants me on 2 antivirals and diflucan and 2 antibiotics plus I swear 30 different supplements. What can this do to my liver??? Kidneys??? None of that is for lyme/babesia either, hes still waiting for my Igenix test. Scary. Also, its hard to deal with a dr so far away. Im feeling like a big chicken because Im already so sick and dont want to feel worse. Also the nerve damage in my face is getting worse and I still dont know whats causing that. He says one of the viruses. I know they say none of this makes us look sick but i feel UGLY like a mr potato head some one put the eye on crooked on one side. Enough rambling, I want to hear about your lyme disease stuff. I may cave in and see a Dr. here too. How did FFC make you feel? Did you take hormones? write me back when you have time, Okay?
    Hope your well, June-Bug
    [This Message was Edited on 02/02/2006]
  3. lilbird

    lilbird New Member

    Its good to hear from you. We need to get together and talk. I started shopping at Olivers because they have such a good selection of organic stuff. Not for there prices thats for sure. Anyway I'm there every week or so and think about you.

    I started going to the Dr. that we talked about. The one where you guys heard that someone got Hep from there office. I got past that and made an appointment with him. I have to say I was very happy with my first appointment. We are testing for Lyme and all the co-inffections through Ingenex as well as some gene testing through Lab-corp. The gene testing shows what you are predisposed to, Lyme, Mold and other nirotoxins.

    Anyway, I have an appointment this morning so I have to run but get back to me.
  4. june-bug

    june-bug New Member

    Thats good that your following up on lyme disease. If Dr. Gordons office were really guilty of that stuff they wouldnt be in practice so it must have been rumour. If your at Olivers you should stop by and see me. Im never in until 3 or 3:30, though and only weekdays. Or just call the club and see if Im in. A lot of times Im not that busy. Are any of your Lyme tests positive at all or equivilent? Or do you know you have it from history and symptoms? I know I have fibro. but im also aware that there is something a little more neurological that sets me apart from all of the other fibro patients and I think its the Lyme (my tests are negative IGG and Positive IGM on Igenex WB test and Negative IGG / Equivelent IGM on standard WB tests). I also have a borderline positive Babesia test, you think that would give them a clue that I have been bitten by an infected tick, But you know how these Dr.'s can be.
    Keep In Touch,
  5. june-bug

    june-bug New Member

    Bump for Lilbird
  6. lilbird

    lilbird New Member

    I will stop by next time I'm in your area. I was thinking today that I am due for a groc. shop. Living out where we are, a person really needs to stock up.

    I tested positive to bands 41, 45,58 and IND to bands 31 and 39 on the IGG

    and positive to bands 41,45,58,66 and IND to band 39 on the IGM.

    So not positive to CDC standard. But positive enough that I want to be treated.
  7. lilbird

    lilbird New Member

    I agree with you about GMA. The office is really clean. I dont think they use needles more than once, not on purpose anyway.

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