Another Question for Mikie....

Discussion in 'Fibromyalgia Main Forum' started by amymb74, Sep 19, 2002.

  1. amymb74

    amymb74 New Member

    You take the guai & antibiotics.......How do you know which is doing what? Or do you think the combination is helping? just curious.........AMY
    [This Message was Edited on 09/30/2002]
  2. amymb74

    amymb74 New Member

    You take the guai & antibiotics.......How do you know which is doing what? Or do you think the combination is helping? just curious.........AMY
    [This Message was Edited on 09/30/2002]
  3. Mikie

    Mikie Moderator

    Dear Amy,

    This is why it's a good idea to give a new treatment about three months before adding something else.

    I started with the Guai. It almost immediately cleared up a lot of my Fibro Fog. Then, it produced a couple of the dreaded Guai flares, which were really no worse than a regular painful flare. It started producing some good days and I had some pretty good remission periods after a while. I've been on it about a year and a half. My tender spots are not nearly as tender for the most part now. I haven't had to use Morphine for pain in ages. I believe it has really improved my Fibro.

    The antibiotics almost immediately produced a big Herxheimer effect signaling that there was a big kill off of parasites in my system. The Herx for me is characterized by a burning sensation in my torso from the inside out. When I'm on the antibiotics, my chronic sore throat, swollen lymph nodes, migraine-type headaches, and IBS are mostly gone. When I try to cycle off them, by the third day, the symptoms have returned. Now, when I try to cycle off, I can tell by day two the symptoms are starting to return and I immediately go back on them.

    I believe that I would be feeling much better if I didn't have CFS as well as FMS. Also, the level of stress has been so great lately that this is not a typical period for me. I have really been fatigued.

    I have started taking thyroid even though I was testing in the normal range. I still test normal but am feeling a little better. I seem to wake more alert and become more naturally sleepy in the evening rather than depending on the Klonopin itself to make me feel sleepy.

    The Klonopin helps me get restful sleep and I get up to eight hours of quality sleep, usually without interruption. I do think it will take some time as I went for years without quality sleep.

    These are the four medications which are helping me. None is a cure, but each one works a little bit. My zapper and colloidal silver help keep parasites down. Stress reduction and therapy round out my regimen along with whatever exercise I can manage.

    After reading about Syndrome X, I am making further changes to my diet as well as getting back on the stick in getting supplements every day.

    I know you didn't ask about all this stuff, but I wanted to provide a complete picture because I think our approach to wellness has to be done in many areas depending on our symptoms and possible triggers.

    Love, Mikie
  4. amymb74

    amymb74 New Member

    for taking the time to answer..AMY
  5. amymb74

    amymb74 New Member

    100 mg of Doxycycline 2x a day - she said all lyme tests can be innaccurate and wants to see if antibiotics will help me (CFIDS for 9 years but sice I had many tick bites growing up in CT and summer camp in old lyme she thinks lyme disease is a possibility) She said if they are helping then I will feel horrible for about 2 weeks & gradually improve after that. I wanted her to test for mycoplasmas but she won't so I figure taking Doxycyline might help me figure that out without the tests. I wanted your thoughts on this & also wondered if the dose was enough to have results - any info. from your exp. would be appreciated......thank-you..........AMY
    Also, she said if it seems to be helping she'll keep me on it for 6 months or so.
  6. Mikie

    Mikie Moderator

    Your doc is smart. It is not necessary to do the expensive tests which often produce a false negative. You will know if the antibiotics are working if they produce a Herxheimer effect, making you feel as though you have the flu. This is caused by the toxins in the body from a massive kill off of bacteria. I'm not familiar with the antibiotics used for Lyme's Disease, but this is just the right dose for mycoplasmas. I'm assuming that the Doxy is the med of choice for Lyme's Disease as well. Have you done any research on Lyme's on the web?

    In any case, bacteria which have been thriving in the body over years usually aren't significantly killed off in the first six months. After that, you try to cycle off them every six weeks to two months. You will know if you need to go back on them.

    Since we know my illness was triggered by a mycoplasma infection, my doc didn't bother with the tests. I'm glad because if the tests showed a false negative, I might not have received the antibiotics which are helping me.

    Love, Mikie
  7. amymb74

    amymb74 New Member

    I'm just excited that for the first time in 9 years I am being offered any kind of treatment option. I did look up Lyme Disease but sounds like if I have had lyme for this long IV antibiotics should be started before oral. I'll see what happens.......thanks again....AMY