Tuesday, March 2, 2010

A Year later...

Well , that time has come. It is my one year 'anniversary' of REAL Lyme Disease treatment - the date i had my first appointment with my much cherished LLMD in Rockville Maryland took place in March of 2009 after a grueling six months of unexplained and frighteningly progressive illness. I wish i could report that i am 'all better' but i am afraid it is much more complicated than that.

I was diagnosed by my primary doctor , given the 30 day 'cure' of Doxycycline and remained sick - in fact worse. I have had a year of pulsed anti-biotic use with a 5 month break in between - a period of time where i started to feel almost 'normal ' again , albeit with some nagging , malingering reminders that all was not well - but exponentially better than i had been in a year's time. I was feeling pretty good , all things considered.

My doctor was not satisfied with letting sleeping dogs lie , however . He felt it was too risky to let my infections off the hook before we really used the full arsenal to lower the load on my body. Partial remission was a good sign but he wants to push through to effect a true remission - one with a stronger immune system and less microorganisms to multiply when no one is looking.
I reluctantly agreed , having come to enjoy about 70% of my health again. I wanted to just move on , be in a form of denial about the realities of this disease and put it all behind me . It has literally been a year and 1/2 of HELL. I wanted my body and my life back .
He convinced me that i wasn't ready , yet. My blood work still had some issues and i did admit , i still had symptoms that wouldn't go away no matter how diligent i was with my diet, herbs and infra-red. I was still carrying too much inside of me to go it alone .

I caved and filled the scripts for Rifampin and Azithromicin this time to target the sleeping dog of Bartonella , while reducing the Lyme load . Next is good ol' Mepron again. I took it faithfully for 4 months and the symptoms of Babesia all but disappeared. I thought i had beat at least THAT one. Unfortunately , i have the strain Duncani that doesn't respond to the typical Malaria drugs used to treat the most common strain of Babesia. I even argued with my doctor that i hadn't any more signs of it . That was about to change.

Sure enough , about a week into the Rifampin & Zith mix , all hell broke loose again. My bladder was the first to act up , then the night sweats came back , the nightmares, chest pains , costrocondritis ( rib pain ) , skull-crushing migraines unlike any other headache on earth .
I am having severe bone pain again that causes me to wake with a cry .
Bartonella and Babesia - still there after all this time . It is so debilitating , so depressing . I feel like i have been fighting this for years upon years , yet my doctor reminds me his basic treatment protocol is 18 months , minimum. I am only 12 months in , 5 months off anti-biotics . I have been on an herbal and homeopathic protocol to give my body a break form abx. Only ! a year of various treatments.
It still feels like a lifetime to me.

My LLMD is patient and kind. He quietly reminds me that Tuberculosis , Malaria and Syphilis
( similarly tenacious infections ) take a year or longer to 'push back' so one's immune system can rehab itself to take over for the medications. It is all about reducing the load. No known true 'cure' in sight. What most doctors will tell you is that you are cured when you are actually in remission. These things never truly go away- they behave more like viruses. They can be tamed but they are still wild on the inside .
Not what we want to hear , but the truth , nonetheless.
My body tells me the truth , too.

This new round of meds has awakened everything. I am in pain again and i am aware of how truly serious Lyme Disease can be. I wasn't one of the lucky ones who caught it immediately.
So i will not see my health return quickly , either. Simple equation , right?
It is incredibly scary how resilient these microorganisms are . But so am i. I can fight back and i will continue until i can reclaim the landscape of my body once more. To feel 70% ok , most of the time, is not really enough for me, not if i am honest with myself. When i suffer a relapse it is like starting at the beginning again. I need to be stronger to maintain my health the way i really want to. So we are on Round Two. It hasn't been easy.
I am still learning to be patient and continue to work with my body . I am painfully aware that i am not 'there' yet.

I am still fighting.

2 comments:

  1. so sorry Zu... you're incredibly strong though and you will beat this in the end

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  2. Bless you Susan.
    I know you do not want just sympathy.
    ...you want to be heard. and seen.
    thank you for keeping your perspective... and trying to help others with what you are learning.
    As you create your own balance between the anger and joy... sadness and awe.
    it helps us all as we try to live this human life.

    thank you.
    beth

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