Lyme as well as the coinfections remains a clinical diagnoses as the test are not always accurate. Therefore, often the doctor will go by your symptoms as well as your response to therapy to come up with answers. Sometimes treatment for Lyme can be compromised from underlying coinfections. Given that you did not respond very well to IV antibiotics for Lyme, he is probably just testing your response to determine if you may have underlying coinfections interfering with treatment for Lyme.
I've read (from doctors/ researchers, not patients) that IV should always be followed by orals for the best results.
However, how long a person stays on IV is a well-discussed and debated matter. :) I know several people who were on IV Rocephin for 6 weeks and felt they had achieved a great remission. (They were put on orals afterwards but I can't remember for how long.)
Others, myself included, were on Rocephin for a much longer time and although it didn't throw me into remission I do know that it did help to some degree. (Bicillin injections were my saviors. But that's not to say that would be true of everyone)
As a non-medical person but with many years on the forums I would say that your doctor's decision sounds reasonable. Whether it's right for YOU------ since no one get better on the same protocol/drug---- it would be difficult to point to the one best way.
About Bartonella----- do you have a copy of your test results? Were co-infections tested along with Lyme? (BTW, if you haven't already, please keep copies of ALL your test results.)
Since some of your symptoms do sound a bit like Bart perhaps that's why the tx for Bart? But that's just guessing on my part.
It's interesting to see that one of the fluoroquinolones isn't rx'd for Bart. Perhaps their horrible side effects for many people have started to cool down doctor's use of them.
Would you post the initials of your doctor? It's believed that doctors names should not be posted in this forum but initials are o.k.
Welcome to Lyme, but sorry you have reason to be here --
Looks like from your screen name that you are a paramedic -- if so, I'd say to remember through your current situation that Lyme never got the rule book on infectious disease, so a Lyme infection acts in ways not usual in a straightforward bacterial infection.
There is a war on between the IDSA and a separate, dissident group of MDs who have formed ILADS, International Lyme and Associated Diseases Society. In a nutshell, IDSA says Lyme is rare, hard to get, and easy to cure with a couple weeks of doxycycline. ILADS docs (though they are not all of one mind, because ILADS is a developing field of study) know that Lyme is immunosuppressive, and the usual IDSA-type tests (which rely on immune response) are often not accurate.
I'd suggest if you feel up to it to walk through Burrascano's treatment guidelines at ILADS [dot] org. It explains the ILADS point of view in practical detail.
There is no need to post MD names or initials here -- it does not add to the conversation imo. The reason NOT to identify or risk identifying Lyme specialists is to protect them from problems stirred up by the IDSA who view ILADS-type docs as quacks and try to damage their reputations and practices. The true problem is that the IDSA is out of step and behind, unwilling to see developing knowledge about Lyme and its coinfections that it is not, notwithstanding the IDSA's statements, hard to get and easy to cure. We are in a situation much like the early days of AIDS, when the medical established held firmly to the notion that you couldn't get AIDS unless you were gay or Haitian, because at that point, those groups constituted the entire AIDS population.
That you were tested at IGeneX and your doc is on the lookout for other infections that are not currently obvious is, to my untrained view, a very good thing. Lyme and its co-infections are subtle diseases, and they require a cunning and persistent MD.
Do stay in touch, and best wishes -- Lyme can be beaten. I'm living proof.
Oops, I see that you said your tests for co-infections was negative. Sorry, I'd missed that before.
There are many people here and other forums who say that their co-infections tests didn't always represent what was really happening and that getting treated for them did improve their symptoms. Of course, as many microbiologists say, the one thing you can NOT rely on is antibody serology for Lyme.
Tom Grier states in his Complexities of Lyme article:
"the use of antibody serology cannot be used as the endpoint for treatment, or for determining cure. It does not use adequate methods to document the presence of live bacteria."
My Bart test, after a positive test result and subsequent treatment, showed negative. Then a month later----- positive. Then negative again! And so on.
I'm fortunate to have an insurance that will allow for multiple tests for the same reason during one year Not every one can do that.
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