Tuesday, May 15, 2007

Lyme disease week 15

I've been on high level antibiotics (Doxycycline) now for 15 weeks. I'm doing OK, my activity level is 50% of what it was when I was well, ie 15 years ago. It is about 500% higher than when I was at my worst last autumn. I've had a few problems with the dreaded fungal attack but with a judicious dose of Diflucan once a week and by taking high dose probiotics I now have it all under control. The worst aspect is my high susceptibility to sunburn which is a small price to pay for such a brilliant recovery. This week it's no bother at all, having had wall to wall rain for the last 10 days (ever since my visitors arrived!)

I see Dr Thomas Stuttaford in The Times yesterday was writing about the perils of Lyme which seems to have become headline news over the last few weeks. One of the points he makes is this: if left untreated, about 60 per cent of patients who have had Lyme disease develop severe arthritis. Well stone the crows, my Rheumatoid Arthritis isn't rheumatoid after all. Actually we had already decided that. Despite the fact I am taking absolutely no medication whatsoever for Arthritis, it is going, I can move, the swelling is going and best of all the hard lumps which I had on the palms of my hands and the soles of my feet have gone. Completely. Bloods taken last week revealed, as the nurse reading them out to me said " better results than you have had for about 20 years". Markers for infection and arthritis were almost normal.

Now for the sting in the tail. A consultation with my GP last week made clear that although I was recovering better than anyone had hoped, the practice partners had had a meeting and confirmed their earlier decision not to prescribe any more of the antibiotics as they are "off licence". I must get them via a private prescription from my private consultant, for which of course, I must pay.

OK, I have posted on this topic before, but that was before I had definite proof that the treatment is really working.

You know what, NICE sucks and so does the NHS. I have been unable to work for 15 years, I finally have a treatment that is working but hey, as if I am not disadvantaged enough already, I have to pay for it myself. No matter that 2 years of NHS time and money was wasted trying to find an arthritis medication to which I was not allergic and pain relief for a condition I didn't have.

4 comments:

Anonymous said...

I'm so pleased for you Jas, shame about the NHS though....

Unknown said...

Thanks flower,xx

Anonymous said...

Very happy this is working for you Jas.

I am just back for 12 days for my yearly check up tests, osteodensity, mammogram and an ultrasound on my aortal aneurysm.

Sure am glad this is improving your quality of life, afterall, what else is there.

Best regards for continuing improvement.

Unknown said...

Hi Terry,
How's the Lake??

Hope you get on OK.
xx