My 10 year old son's Igenex results are back

He tested negative for Lyme and positive for Bartonella. LLMD office called and asked us to come back on April 26th.

Is it normal for a LLMD to withhold treatment for Bartonella for a whole month, until next appointment, on April 26th, given a positive Igenex test? What is the point? Can't he prescribe something right away, NOW? Any thoughts on this?

Post Edited (Simela1) : 3/27/2015 11:50:39 AM (GMT-6)

I don't know, I asked for a copy of the test and the receptionist said she will give you a copy in a month, when we go see the doctor. I have no idea about any bands. Not happy right now :( I am thinking I should call back and demand treatment and test results. But I always take a bit of time to think things over and than make a decision.

You can call IGeneX and have them send you a copy of your results. They won't fax it which is RIDICULOUS but they will send it by mail so it takes a few days to a week. That's your best bet, to see the results and than post them on here for us to interpret, also to send them to your LLMD so he can understand them better.

Simela, if anything, the Lyme test would be more accurate because he took it after antibiotics, I think. I would call Igenex for the results so you can see them yourself.

Too bad that you have to wait until end of April.

My LLND does 15 minute phone appointments if needed.

I guess your LLMD is just being cautious...not wanting to prescribe without seeing and evaluatins?

Simela1 said...
The question is: is his test for Lyme negative because he doesn't have it, OR is his Lyme test negative because he was tested only 3 days after he finished a 10 day Cefdinir prescription (for a ear infection)? Maybe the timing of the test for Lyme was wrong? He did get the Bull's eye rash in 2013, so he had Lyme for sure. Now, he is magically cured?

His lyme test may be negative because of bartonella-induced immunosuppression - antibody reaction to infection will be low, thus WB (which tests antibody response) will return non-reactive or IND.

Even though IND bands are not counted as positive, any reactivity of borrelia-specific bands would indicate infection. You don't need a positive test result to prove you have lyme. Any lyme-specific reaction is an indication.

While K was being treated for bartonella, her Igenex WB became increasingly more positive for lyme, while at the same time she was becoming progressively more asymptomatic. The LLMD and I took this as an indication that her immune response was coming back on line.

Don't fuss too much about the 1 month wait if you like this doctor. Your child has had this infection for a long time, and you have been doing well keeping him relatively healthy. Keep up the good work and use the time to investigate bartonella. Time will fly by.

Our LLMD never did treat lyme. I think she assumed that 2 years of multiple combo abx for bartonella would also take care of borrelia.

rowingmom said...

Simela1 said...
The question is: is his test for Lyme negative because he doesn't have it, OR is his Lyme test negative because he was tested only 3 days after he finished a 10 day Cefdinir prescription (for a ear infection)? Maybe the timing of the test for Lyme was wrong? He did get the Bull's eye rash in 2013, so he had Lyme for sure. Now, he is magically cured?

His lyme test may be negative because of bartonella-induced immunosuppression - antibody reaction to infection will be low, thus WB (which tests antibody response) will return non-reactive or IND.

Even though IND bands are not counted as positive, any reactivity of borrelia-specific bands would indicate infection. You don't need a positive test result to prove you have lyme. Any lyme-specific reaction is an indication.

While K was being treated for bartonella, her Igenex WB became increasingly more positive for lyme, while at the same time she was becoming progressively more asymptomatic. The LLMD and I took this as an indication that her immune response was coming back on line.

Don't fuss too much about the 1 month wait if you like this doctor. Your child has had this infection for a long time, and you have been doing well keeping him relatively healthy. Keep up the good work and use the time to investigate bartonella. Time will fly by.

Our LLMD never did treat lyme. I think she assumed that 2 years of multiple combo abx for bartonella would also take care of borrelia.

Although I don't think I would be comfortable assuming that Lyme was taken care of with Bartonella treatments - I agree completely with Rowingmom on this.