karatelady- re: FFC and lyme (or anyone treating for lyme at FFC)

Discussion in 'Fibromyalgia Main Forum' started by sickasadog, Sep 15, 2005.

  1. sickasadog

    sickasadog New Member

    I just sent directly this to the lgcoleman, as I thought she went to the FFC and had lyme, but she said i got her confused with you!

    Anyway, I was just diagnosed w/ chronic neuro lyme after being diagnosed w/ CFS/FM for 10 years. I am now going to a LLMD for treatment. Prior to this, I was thinking about going to the FFC for treatment. I do have a friend who is going there now and was also just diagnosed with lyme, but she was not happy with the way the FFC handled things- she had to ask for the Igenex test even when lyme is so prevalent in CFS/FM patients and when they told her the diagnosis, it was like no big deal. (This was a different FFC from the one you go to I believe) Anyway, I was just wondering, as I am sure the FFC is very knowledgeable about CFS/FM, how comfortable do you feel in them handling the lyme and are they following you closely on meds? They put my friend on doxy and didn't really make a big deal about the lyme. My LLMD seems to think that the lyme is a huge part of my problem and has most likely created many of the symptoms which are now linked to CFS- meaning, it suppressed my immune system and gave the impression of CFS. He also feels that I do have FM, but that itis secondary to the lyme.

    Anyway, was just curious about the FFC and the way they are handling your lyme treatment. As I said, I go to a LLMD who does many of the things the FFC does (supplements, yeast, boost immunity, etc). I also started attending a lyme support group and they felt my friend should be seeing a LLMD rather than the CFS dr since lyme is so very serious and you really need someone very experienced with it (BTW- my friend's CFS dr at the FFC said it was the first case of lyme they had there, so obviously she has not treated manyt cases)

    What are your thoughts on this??

    Thanks,
    SD

    P.S. Hope you are feeling much better!!!
  2. lilbird

    lilbird New Member

    Hi, I am going to the FFC in Los Angles. My Lyme test has been neg. But because of the symtoms I am having and that I have had serveral ticks, one with a rash, the Dr. is treating me for it.

    The Dr. is treating me with herbs. I am on Cumanda and Samento and using Burbur to detox. He tells me that ABX will not work as well in cronic lyme. I don't know what is better. I know the LLMD's are using ABX. What are you on?

    Anyway that is my only concern. Other than that I am happy with my treatment. I am going to give them a chance and if it doesn't work I will seek out a LLMD.

    Please tell me your experiance with you LLMD. Also, where are you from.

    Cathy
  3. sickasadog

    sickasadog New Member

    Actually, my LLMD said that with chronic lyme, even more reason to treat aggressively. I am on doxycycline and plaquenil and i am already having a horrible herx, which the dr said is good.

    So, when you said, your test was negative, was it the Igenex test or just the regular test for lyme?? Many of the regular tests for lyme are negative. I had the igenex test.

    Let me know how things go w/ your protocol. I am nervous to be on abx but also would be nervous to be on something not as carefully studied.

    SD
  4. sickasadog

    sickasadog New Member

    just curious..... how did the FFC dr handle your lyme diagnosis? AS I said, i have a friend at a different FFC (won't say which one) whose dr just presented the lyme diagnosis as no big deal and just an incidental infectiona along with the other ones she has. My LLMD seems to think chronic lyme is a VERY big deal, as do many of the people I have met with chronic lyme. Just curious. Have your FFC dr treated many with lyme? Does he or she feel it is at the root of your symptoms?? Lyme can mimic CFS and often cause fibromyalgia.

    SD
  5. pumpkinpatch

    pumpkinpatch New Member

    I'm being treated for lymes at the FFC. I started my first dose of antibiotics July 25. The plan was 4 100 mg. doxycycline and 2 500 mg. biaxin and on the third week another for the cysts.

    Anyway I'm still on the doxy but dropped the biaxin for now and will start back on 1/2 tomorrow. Just felt too nauseated. My pain level has really increased, a prickly pain and even my eyeballs are sore, fuzzy vision again. I think I might be herxing getting all that bacteria out. Will be talking to Dr. Labair soon.

    I seen to have more energy these days and my guess is from for all the hormones and immune boosters I've been taking.

    I do know and have sent an e-mail to a LLMD in B.C. who comes highly recommended if need be. For now I'm hanging in there.

    Cindy
  6. lilbird

    lilbird New Member

    My Dr. does beleave that Lyme is at the root of my problems and said it will take some agressive and long term treatment. I do have to say though, that he did not act like it was that big of a deal. It was more like, you have this, you have that and I think you have lyme.

    I am wondering why the FFC is putting some people on ABX and others on herbs.

    Cathy
  7. sickasadog

    sickasadog New Member

    i believe they gave my friend a choice.
  8. sickasadog

    sickasadog New Member

    did you have a positive Igenex test? how did he diagnose lyme?
  9. lilbird

    lilbird New Member

    I was tested through Labcorp. Again not sure why some FFC's are using IgeneX and others are using what ever. I have had three neg tests with them.

    I had a tick when I was a kid that producted a very red round rash. Thats all I remember about it. I also had three ticks between, say, 1980 and 1995. I started to have pain sometime in the mid 1990's. And because the smytoms I am having are like Lyme, the Dr. thinks it a good possibility that that is what I have.

    I have been on the medication for 21 days. I have been herxing for the last 10 days or so. Lots of burning type cramping in my lower ab, the burning is going down my thighs. This is something I have never had before. Then comes the diarrhea. I look at this as a good sign.

    Cathy
  10. sickasadog

    sickasadog New Member

    my friend had to push her FFC dr to test her through Igenex.
  11. sickasadog

    sickasadog New Member

  12. pumpkinpatch

    pumpkinpatch New Member

    I have to say for myself Dr. Labair mentioned Lymes right away and said that the test would be through Igenex. I never had to ask for it. Lymes was at the top of her list. We were to test for Lymes and then test for other infections and viruses. Start going down the list looking for problem areas.

    My Igenex IgM western blot came back IN which is slightly positive, had enough bands to treat me. My thinking is they could be well hidden and the antibiotics will knock them out.
    So I'm on the antibiotics, hormones, vitamins, supplements and meds and hopefully everything will come together.

    Cindy
  13. ldbgcoleman

    ldbgcoleman New Member

    Why don't you call the FFC and ask?? They are always nice about answering anything and they deal with skeptical people all the time. OR have your friend call. I question Dr B and what we are doing every time I go. They really have treated me as a partner and a customer they don't act like end all be all gods. They are open minded. At least thats my experience. Good Luck Lynn