Monday, March 10, 2008

The end of the Lyme

A couple of weeks ago I took myself off to see my Lovely Lyme Doc (LLD) in another part of the country. Alone. This in itself was a novelty, it was to be the furthest I have driven alone for 15 months. I took it slowly, arrived in time to have lunch in a wonderful cafe nearby and stock up at the Indian food shop around the corner. Thus fortified I sallied forth into the consulting rooms.

Apart from having a slight performance removing my clumpy, ankle-high walking boots, the consultation went very well. So well I had to stop and pinch myself afterwards to make sure I wasn't dreaming, and celebrate in style with the worst plate of supermarket fish and chips I had ever eaten. That brought me back to reality.

In a nutshell I am improving, vastly and quickly now too, every day brings some new realisation or surge of energy. A greater improvement than the LLD had dared hope and certainly better than I had ever dreamed about. I'm losing weight too, freed as I am of some of the medications that have coaxed me into life the last 16 years, and which I KNEW were causing me to gain and then retain weight. The end is beginning to be in sight. I remain on the treatment until May, when the sun and our family holiday in Corfu will pose problems anyway. This time it will be different however, I won't re-start unless I start to experience severe symptoms again, in which case I'll be racing back to LLD and begging for more antibiotics.

How long this break will be is unknown, it could be weeks or even months before those little hidden bugs come creeping out of their hiding places and make their presence felt. The worst case scenario is that after 4 weeks I will be sick again as I was after last year's holiday, the best case is that I remain well indefinitely, in which case we will know that all those horrid spirochetes have been zapped into oblivion.

Some of the symptoms will never completely go; WH asked LLD last visit what the prognosis was and was told a 95% recovery was possible in theory. This passage from Todors Online Journal of Bacteriology explains why:

Several antibiotics are effective in the treatment of Lyme disease. The present
drug of choice is doxycycline, a semisynthetic derivative of tetracycline. Even
patients who are treated in later stages of the disease respond well to
antibiotics. In a few patients who are treated for Lyme disease, symptoms of
persisting infection may continue or recur, making additional antibiotic
treatment necessary. Varying degrees of permanent damage to joints or the
nervous system can develop in patients with late chronic Lyme disease. Typically
these are patients in whom Lyme disease was unrecognized in the early stages or
for whom the initial treatment was unsuccessful.

My GP remains supportive even though she is not allowed to prescribe my treatment on the NHS. Odd really, as she can see that I am so much better than I was 12 months ago. Thank goodness I found out the real cause of my illness when I did. The state I was in last year leads to me think that by now I might not have been around.

Who cares about the odd 5%? You've got to agree, 95% of life is a much better prognosis than none at all.

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