For those treated for LYME by the FFC...

Discussion in 'Fibromyalgia Main Forum' started by meowchowchow, Jun 13, 2006.

  1. meowchowchow

    meowchowchow New Member

    What meds and supplements did they prescribe for it? I'm trying to work with my internist because I can not afford the FFC anymore. Any info would be appreciated. My internist just doesn't know much about Lyme.

    Thanks,
    Meow
  2. pumpkinpatch

    pumpkinpatch New Member

    Thankfully the Denver FFC Doctor recommended testing for lyme at my first appointment. When it came back she started me on biaxin, doxycycline and once a month for a week flagl. At the same time working on hormones, immune, sleep etc.

    Can you make an appointment with a LLMD specialist. I started seeing one in Feb. You might also have co-infections. Do you have a drug plan? I just started mepron for babs and it's really expensive but my night sweats have stopped!!

    Cindy

  3. meowchowchow

    meowchowchow New Member

    Thanks for your response. The Dr. in atlanta at the FFC really was not ready to test me for Lyme but I pushed for it. She wanted me to do heparin, thyroid etc first. I had already started all the supplements and it was costing a fortune!

    I do have a health plan and drug plan. How long have you been taking the antibiotics and how do you feel? Did you test positive on the WB or just some + bands?

    Thanks...
  4. meowchowchow

    meowchowchow New Member

    Also Cindy, there are no LLMD's in Ga and I'm really not financially able to travel to NC or FL to see one. Why did you switch to a LLMD...were you not happy with the dr. at the FFC or what?
  5. pumpkinpatch

    pumpkinpatch New Member

    yes, I was happy with the treatment at the Denver FFC and the Dr. was very open minded. The only problem was I live in Canada and was getting harder to continue but I lasted from June-Feb. and then decided to seek out a LLMD in Canada. He is a 8 hr. drive for me.

    I was retested by the FFC in Sept. and alot of my readings were within range example: T3 and Reverse T3 plus pregnenolone, dhea etc.

    One added bonus it I'm finally getting an appetite back!! Was always nauseated and no energy. Just couldn't eat. Now I'm eating nutritional meals, lots of veggies.

    Cindy

  6. victoria

    victoria New Member

    the protocol is basically the one that LLMDs follow, esp the use of the flagyl once/month to dissolve cyst-form.

    Meow - I left you a message on your post at the Lyme board here.

    all the best,
    Victoria

  7. hopeful4

    hopeful4 New Member

    I think that some of the protocol is individualized. For example, I started on doxycycline but could not tolerate it. I was switched to azithromycin (Zithromax) 500 mg./ 1x/day. Now I'm doing that 3 weeks on, 1 week off.

    Boluoke (lumbrokinase) 1/ 2x/day - 30 minutes before brkfst and dinner
    Artemisinin 1/ 2x/day - 30 minutes before brkfst and dinner
    Nystatin 500000 IU (not sure if I got all the zeros) 1/ 2x/day
    Probiotics (Jarrow) 2 in a.m. on empty stomach

    The Nutrimedix herbal tinctures: Cumanda, Samento, Burbur
    These are given in a specific protocol and must be built up over time. Then are cycled. Some taken 2x/day before meals; burbur taken 4x/day 30 min. after the first two.

    Soon to add in:
    Cholestyramine
    Amantadine
    Flagyl
    Omnicef
    Mepron

    If after 3 months on all of these my progress is not what it should be, I will start on 3-4 months of IV Rocephin.

    Then there are a number of supplements: COQ10, Fish oil caps, multi, immune boosters, etc.

    If your internist doesn't know much about Lyme, it is in your best interest to find someone who does. This illness is extremely difficult to treat. As a patient you need the support of a doctor who can help you through the rough times of treatment, and know when to make changes according to your progress.

    If you had a really bad toothache, you would go to a dentist. If you had heart disease, you would be going to a cardiologist. If you had cancer, you must see an oncologist. Get my drift!

    As I've mentioned before, it is possible to find an LLMD who will partner with your local doctor, and guide him/her through your treatment.

    In the meantime, please print off a copy of Dr. Burrascano's 2005 Diagnostic and Treatment Guidelines. You can read it for yourself, and share a copy with your doctor.

    Wishing you the best,
    Hopeful4
    [This Message was Edited on 06/13/2006]