I would like to hear from anyone who tested negative for Bartonella and was treated anyway with Bartonella meds such as Levaquin, Zithromax, Cipro or Rifampin.

Did your symptoms improve? Did/do you have mainly GI or neuro symptoms? How bad was the herx and what symptoms did you have?

I wish there was some way to know if my husband really has Bartonella before we spend any more time and money chasing what may be a ghost.

For me it helped a lot - I never had a test but I have symptoms of Bart.

the lyme lab at University of Rhode island has this data ...they do research on ticks etc...

says sometimes depending on what abx you have been on, or even sometimes as the nature of the disease..

he will get repeated negative blood pcr's and also negative antibody tests, only to have bartonella (and/or mycoplasma) show up in the spinal fluid.

It can become encapsulated in the CNS.

(btw, in his experience, though not formally studied, he has also found that IV Claforan is effective against both bart and lyme cns infection)

In our experience with myself and my son, as well, all our treating LLMD, LL neuro, and Doctor Jones, ect. suspected bart strongly as neurological symptoms got worse while in treatment for Lyme.

(in our cases it was noted that long term zithromax at high doses may have contributed to 'driving bart' into the cns)

They tested his spinal fluid and didn't find the DNA, but also expected there was a good chance they may not pick it up in the testing specimin, and treated for bart anyway with Rifampin. It may not be worth tapping the patient if the Docs will treat for bartonella empirically and watch for response, and if response indicates infection..continue therapy long enough.
The yeild is low in pos cns pcr, tho - in many cases it has been found, which goes to show it can be there when not found in the blood.

One of the initial improvements on the drug was that he too became much more lucid..
a return of his personality.

Improvement continued from there. He was on 300mg 2x a day..for a year and a half.

Rifampin is given a minimum of 9 months in children with TB, and requires longer tx at a high enough dose I believe in cns bart/lyme infections.

Some Docs are skiddish of the drug, but those with experience (and TB Docs) know it can be a safe therepy as long as liver functions are monitored once a week, every two weeks at the least.

Best,
Mo

I am now on Zithromax and FLagyl and have worsening of my bowel symptoms, unabated for 5 months since before Lyme was confirmed.

Just wanted to know how the liver functions are checked weekly if can't get to office that frequently and insurance won't cover labs?

Most places have a local blood draw facility (like qwest or tricore)you can go to before work or after work or whatever. The hopsital also has labs to do these tests.

Your local doctor (pcp) should order them so that insurance covers them.

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Originally posted by trails:
It is routine lab testing...nothing special really. Your insurance doesnt cover basic CBC and CMP panels? Man, I thought MY insurance was bad. They do pay for me to get checked every 2 weeks. Standing orders.

Most places have a local blood draw facility (like qwest or tricore)you can go to before work or after work or whatever. The hopsital also has labs to do these tests.

Your local doctor (pcp) should order them so that insurance covers them.

Trails

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I keep bringing it up to my pcp, but she's not buying the antibiotcs for this long.
She thinks the bacteria should be gone by now!

I think ducks have an ego problem!

For me, the bart symptoms are pretty clear. They are continuous instead of relapsing, and include:

Insomnia
Splitting sinus headache
Swollen lymph glands from the base of my neck to my ears
Short fuse, revved adrenals
Scritchy eyes