Treated for Lyme with ABX since November

Discussion in 'Lyme Disease Archives' started by happygranny, Jul 12, 2006.

  1. happygranny

    happygranny New Member

    Hello,

    It has been a long time since I have posted at Immune Support. As one Dx'd with FMS & CFS, I spent a lot of time at that message board until I heard about Lyme Disease last fall.

    A friend who had the same DX as me went to a Lyme Literate doctor and started treatment. After 5 months she phoned me to tell me how much better she is doing.

    Of course I went to that same LLMD in Hope, British Columbia. After exam with a lot of symptom questions I was given a Dx of Lyme. Blood test was negative, but did test low positive for Erhliciosis and Rocky Mountain Spotted Fever.

    I started the ABX treatment Nov 23rd 2005. He prescribed Ketek, 400 mgs twice a day and Flagyl 500 mgs twice a day.

    I herxed big time, and cut the flagyl down to 250 twice a day.

    It was a miserable 5 months with only the occassional day of feeling good. I was getting discouraged. Then it seemed I turned a corner and started feeling a lot better.

    After seeing the LLMD in early May, he changed Flagyl to Tinidazole because of the Peripheral Neuropathy I was experiencing. That helped with the burning, tingling, aching extremities.

    I did start taking Neurontin/Gabapentin for the general body pain and it really helped, but the improvment in my energy level is astounding.

    At this point I think I could consider going back to work as far as my energy levels go, however there is still little if any improvement in my cognitive difficulties.

    If there is only one subject I have to think about or act on, I do fine. I even was able to make a presentation at a meeting I attended. But don't ask me a question on another subject - I am lost. Don't talk to me when I am baking or even making coffee, I am bound to mess it up, and never, ever expect me to double a recipe!!!

    Because of my inner furnace that turns on and off whenever it feels like, and because of my heart palpitations, my LLMD thinks I could also have Babisiosis and wants me to go on a 6 week course of Mepron. That is a very expensive drug, $1200.00 for 6 weeks, so I am waiting to see if our Insurance will cover it. There is a less expensive med, but it has many more side effects and much harder on the liver.

    Will I ever get 100%? I doubt it, but it is great to have a day when I don't need to lay down frequently, and great to have enjoyed the visit I just had with my beautiful grandchildren, and be able to play with them.

    So, that is my story so far.

    Happygranny (aka Jeannie)







  2. victoria

    victoria New Member

    I'm not surprised, more and more of our population are turning up with one or more of these infections...

    After my son was dx'd with Lyme, one of our local support group went to get tested and she too came up positive even according to CDC standards, just like my son did... even tho it is not supposed to be in our state. There's another lady who knows she had it over 12 years ago and has never felt right since but can't get her doctor to even test for it, sigh. Another is going to go in a couple of weeks to be tested.

    So glad you came back to post!
    Victoria

  3. ANNXYZ

    ANNXYZ New Member

    for sharing. I also have lyme and wonder if ANYONE EVER REALLY IMPROVES . PLEASE COME BACK and keep us updated on your progress, as we need the feedback.