Re: spinal tap?

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In a message dated 9/15/99 10:57:43 PM, Namkrats3@... writes:

<<I would never consider a tap just to Dx LD. Yes, it can rule out other

diseases, but it is a crappy diagnostic tool for Lyme.

To anyone considering one, think twice..>>

Hi Joan

Thanks for your input! I am sorry you are in so much pain!

I have decided, that if the neurologist can tell me what she is

looking for specifically (other than Lyme) I will consider the tap.

However, I am going to make certain that there is NO other way to

test for whatever it is she might be looking for. I would prefer to

have a PCR done, if she is looking for real evidence of Lyme. I had a

normal cranial MRI and SPECT.

Here is the problem, my Lyme has gotten worse over

the course of the treatment. I was on 200 mg of doxy for 30 days with

no marked improvement (the fatigue and fuzzy head cleared), Next I

was on Tetracycline for 6 weeks, again no real improvement with the

neuropathies and parasthesias. Then on the Ceftin (1500 mg) for 30 days

I became so sick, I ended up homebound for over a week. Now I am on

3,000 mg of amox and 300 mg of doxy, the neuro psych symptoms are much

improved, and the neuropathies and parasethias aren't as bad. I am not

well by any means, but better than when I was taking the Ceftin. I'm certain

that the Ceftin caused the Lyme to flare and progress. Stupid me thought

it was a " herx " !

So, am I just drug resistant? I am seeing an allergist next week to

determine if I am allergic to biaxin. There have to be others having trouble

getting the right combo of meds? This disease is so confusing. There are

no absolutes. No black and white... just shades of gray! Just like my WB

results... equivocal... 4 out of the 5 bands for Lyme were positive!

If anyone has any thoughts about further testing and/or treatments they

have found helpful... I sure would like the input before my appointment with

my neurologist. BTW Not one of my doctors has suggested that this isn't

Lyme!

Sorry this is so long... I'm rambling!

Take Care Everyone and Keep Polishing those Silver Linings!

{{{hugs}}}

Jane