??? for FFC'ers who have lyme

Discussion in 'Fibromyalgia Main Forum' started by Countrymom, Feb 3, 2006.

  1. Countrymom

    Countrymom New Member


    I was wondering if anyone who is using the FFC that has lyme has gotten better with their protocol. I am starting my 6 months under their protocol and feel much worse...still

    I know many are feeling better that don't have lyme and I think they are great with CFS/FMS, I just worry that they don't have enough experience with lyme patients.

    Ya know, us lymies are very hard to treat...even by the top guys

    I guess I may just need some encouragement,hopefully I will soon turn the corner and start to heal.

    Thanks,
    Dani
  2. toronto133

    toronto133 New Member

    I had some positive bands for Lyme on the Quest test given by the FFC and then pushed for an Igenex (wanted to know for sure). The results were very positive as per CDC guidelines.

    After a telephone consult this morning the doctor there said 4 months of antibiotic treatment was all that was needed and if symptoms continued then herbs and IVs. Therefore, I have decided to see a Lyme specialist.

    I think the FFC's vary greatly in terms of the expertise and background of their physicians.

    Lyme doesn't seem like like something you want to fool around with. Many people seem to bounce around for years being undertreated and never really getting better.

    Denise


  3. victoria

    victoria New Member

    My son, who has had many of my symptoms, was dx'd firmly with active/chronic Lyme by a LLMD; he has been on oral abx for last 10 months.

    They have tried different combinations of abx to see what he reacts best/worst to, ie, the more of a herx, the more it is doing but the worst he feels. There are over 100 variations of B. burgdorferii (Lyme), so they respond differently to different abx.

    He experienced some improvement right away, but not much in the past 6-7 months... altho the abx have been changed several times; plaquenil has now been added to help abx to cross into brain, helps with inflammation...

    If he doesn't respond better in the next 2 months, he will probably be headed for IV abx...

    So don't know if this is encouraging or not? I have read that for many it can take a year or more to actually start feeling better... but they should be trying different abx from what I've read, at least.

    all the best,
    Victoria
  4. Frecker777

    Frecker777 New Member


    I was diagnosed with lyme through the FFC and have been on their lyme protocol since November—def no improvement here. I decided to give them 3 months and now I have an appt with an LLMD. I agree they are a bit too inexperienced with lyme and I think if that is my foremost problem I should be seeing the best—or at least a specialist.

    Not to mention the FFC I go to just changed docs and the new doc is from the “Lyme disease is over-treated” camp—so it’s a struggle to say the least. I take doxycycline, flagyl (one week a month), cumanda, samento, and probiotics—are you on a similar protocol?? What are they telling you about your non-progress on the protocol?
    -Carrie
  5. Countrymom

    Countrymom New Member

    I am on the same protocol, without the flagyl and am taking artemisinin as well

    I have several co-infections so they say that may be why and I also still need to start treatment for my EBV.

    Are you registered over at lymenet? My handle is Kentucky girl over there, you can send me a private message over there and we can do some deep discussion if you would like.

    Thanks everyone for the replies.

    Dani
  6. pawprints

    pawprints New Member

    I am on herbs for the Lyme through the FFC. No antibiotics. Anyone else making progress or not making progress with the treatment of Lyme through the FFC?

    Thanks for your replies.
  7. pawprints

    pawprints New Member

    Glad you are doing a bit better with the LLMD. Wishing you continued success.
  8. karatelady52

    karatelady52 New Member

    Have you read Stephen Buhner's book called Healing Lyme?
    He uses 3 core herbs and adds others as necessary. There's a lot of discussion on it over at Lymenet.
    (I can't remember if I've discussed this with you?)

    I'm using them in conjunction with the Rife machine but I've just started the herbs so I can't say if they are working. They do cause me to herx so they must be doing something.

    There's a lot of discussion over there on this book and the herbs. One of the core herbs is Cat's Claw which would be like the Samento that you are taking.

    Sandy

  9. hopeful4

    hopeful4 New Member

    I'm being treated at the FFC for lyme. Just recently got started with it, so too early to tell. Although my Dr. is new at treating lyme, I'm happy with her abilities so far. She is the one who picked up on the idea that I should be re-tested by Igenex due to my persistent and suspicious lyme symptoms, and then diagnosed me.

    I'm keeping in mind that at some point I may prefer going to an LLMD.

    Hope everyone is finding success in their treatment.

    Hopeful4
  10. maria7

    maria7 New Member

    I heard a lot of great feedback about a homeopathic remedy used for Lyme that was developed in Belgium. I have CFS, but heard Lyme can mimic CFS, and also that it's not always detectible in the blood. Anyway, the website is www.lyme-resource.com. There's a highly-informed woman Nicky who you can call and speak with. I think the whole treatment costs something just over $200. I had another friend who thinks he cured his 4 year long lyme disease by taking colloidal silver. I know that you have to know what you're doing with that stuff. Again I do not know if I have lyme, but both treatments came highly recommended, the first by a publisher of an alternative medicine magazine of high repute with no possible financial gain. Good luck!!!
  11. dolfenn43

    dolfenn43 New Member

    Could you tell me what FFC is? and are you talking about a treament for lyme the tic? If so what is your treatment. I was told one time with my symptoms of pain and a fever for 1 yr.And where I lived. The opinion of this specialist was that I could have lyme disease. Ive never had a work up for this. That doctor was filling in for my doctor that was on vacation and nothing else was ever said.She was gone when I came in for my next appt.
    I feel like some doctors look at it as a "made to big of a deal thing and most people dont have it". And that there is no good test for it. If there is I would like to get it.
    Dolfenn43