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Hi All:

I first posted a couple of weeks ago. Since then things have gone from bad to worse to bad again.

After 1 week of the doxy iv I ended up in the hospital. The effects of the tx were more than I could handle. I was extremely dehydrated and weak. While in the hosp. a million more diagnostic tests were run. All the hospi docs could come up with was fibro and depression.....same old, same old.

Last week the Bowen test of my jawbone biopsy came back positive for borrelia. This latest result plus my equiv. Western Blot and positive erlichiosis tests are strong evidence that I do in fact have Lyme. We are convinced now.

We are now working with Dr. S in SF. Had our first appt with him today. My latest abx protocol is rifampin and ketek...both oral. The herx from the doxy iv was just more than I can currently handle....we'll see if at some point I have to move back to iv. Dr. S seems to think we can fight things pretty hard with just oral combos...hope he's right....now that I'm picc line free, I'd hate to have to put it back in.

Oh yeah, also found out I have a problem with gluten and need to start on a gluten free diet. This could help to alleviate a lot of my symptoms : )

I'm still wearing a fetanyl patch to deal with the pain. But will start trying to wean from this soon. Hopefully the abx and anti-inflammatory meds will help lower the pain.

We're feeling a little more hopeful today...we know we have a long hard road ahead of us, but feel good to be working w/Dr. S.

Lots of Docs in SF for the weekend Lyme seminar...interesting time to be dx and tx for lyme .

I'll try to keep you posted on my progress..as my health condition permits it.

Hope you are all faring well.

Warmest Regards, Lisa
Hi:

One doc who's seen how bad I herxed from doxy recs:

150 rifampin 2xday
200 ketek 1xday

once feel settled with this:

300 rifampin 2xday
400 ketek 1xday

finally

300 rifampin 2xday
400 ketek 2xday

The final is what the second doc recommends to start with immediately...but he hasn't seen how bad I herxed on the doxy.

Another llmd who was present for initial consult with the second doc also felt the titred approach is better for ppl like me who herx so bad.

I apparently have a very high bacterial load.

My cd57 NK cell count was an extremey low 8.

This seems to confirm to llmd's that the bacterial load is extreme.

Feeling OK today...however I have extreme back pain....upper right ribs....uugh!!!

Thanks, Lisa





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