My Lyme Update

Discussion in 'Fibromyalgia Main Forum' started by happygranny, Dec 29, 2005.

  1. happygranny

    happygranny Member

    Some of you might remember that I saw a LLMD (Lyme Literate Medical Doctor) Nov 15th of this year. He gave me a clinical diagnosis of Lyme Disease after an exam and a lot of questions about my symptoms.

    He ordered blood tests and gave me a prescription for ABXs - Ketek and Falgy.

    I started the ABX on the 24th and had a herxing within a few days. Afterwards I had a few weeks of feeling quite good. I even shopped for 5 hours at a time which was unheard of for me prior to that.

    Today I am in the 6th day of misery like I have never experienced. I think this is what is referred to as the Four Week Herx. A herx from hell, especially the pain. The pain in my feet, legs, hands and arms is so awful I am groaning out loud sometimes. I am taking Tylenol 3s, but not supposed to use much of them because of the liver problems while also taking Flagyl.

    Blood tests came back on Dec 21st and though I didn't test positive for Lyme ( I didn't expect too using the Canadian labs) I did test positive for Erlichiosis and Bartonella. ERlichiosis can only infect soemone through a tick bite and Bartonella through ticks or a cat's scratch. I never go near cats..

    I am still waiting results of the Babesiosis.

    Maybe I will spend the money for the Western Blot test, however I think my herxing reaction to the ABX, my symptoms and the positive test results for Erlichiosis and Bartonella tell me I have Lyme.

    Next week I will see an infectious disease doctor. This might be a waste of my time as I am not sure how Lyme literate he is. The LLMD that I did see is in BC and I live in Manitoba, so I am hoping to find a doctor who can help me here in Manitoba.

    That is about it for now, I await a happy ending.

    Here's to our Good Health!

    happygranny
  2. victoria

    victoria New Member

    It's hard to herx, but stick with it, it is an up and down kind of thing! I'm glad you got some positives on the blood tests, makes it easier for other MDs to believe you!

    all the best,
    Victoria
  3. Jen102

    Jen102 New Member

    thanks for the update. I may have to go this route at some point, so try to absorb what others are doing. What do they tthink will happen next? how many of these nasty herxes do they expect? when do they think you will get ahead of the lymes? Thanks for the info. Blessings to you. Jen102
  4. happygranny

    happygranny Member

    Jen, It is hard to say how many herxes and how long they will last.


    From what I have read the reactions to ABX treatment are very different. I know a woman who after 5 months is doing a lot better, and never found her Herxes to be too bad as far as pain goes. Hers were more mental confusion extremes and absolute fatigue.

    On the other hand I have also read at Lyme sites of people who have been on treatment for months and not noticed any improvement at all.

    I can't wait for my next good wave. I need a break from this pain if only for a few days...

    happygranny
  5. dreamharp

    dreamharp New Member

    I was wondering what were your main symptoms that led your
    doctor to diagnose you as having Lyme?

    Thanks
    Dreamharp
  6. happygranny

    happygranny Member

    My main symptoms.....

    -PVCs (irregular heartbeats) very strong, causing shortness of breath and pain in chest around heart
    -pain in hands, wrists, arms, feet and legs, sometimes a 3or 4, often a 7 or 8
    -pain in spine, esp. between my shoulder blades
    -neck pain and tightness, clicking in right jaw
    -LOUD tinnitus
    -cognitive difficulties, memory, concentration
    -Acid Reflux
    -numbness on the outside edge of my left leg and now my left arm
    -sometimes feel like I am filled with cement, hard to move
    -hit-the-wall fatigue, shakey all over, lots of 'pings' in my musles when I lay down and try to rest.
    -breasts sometimes feel engorged
    -tender lymph nodes
    There are probably some I have forgotten, but these are the basics.

    happygranny