OK, Really Frustrated Right Now!

[MamaOnAMission]

she was on antibiotic for bartonella/lyme for approximately 6 monts. not the full dose, because she was too aggressive and mean. dr. j. retested for bartonella and said she tests negative right now. seems odd to me, since she is/was so so mentally ill, and she was not on antibiotics for long, and not on full dose. i am really wondering about these tests. i also did not see much improvement with antibiotics with her symptoms. i am really looking for some feed back. i thought the bartonella tests were pretty accurate. i hear there on "no" false positives. any thoughts are REALLY appreciated!!!!

[JuliaFaith]

she was on antibiotic for bartonella/lyme for approximately 6 monts. not the full dose, because she was too aggressive and mean. dr. j. retested for bartonella and said she tests negative right now. seems odd to me, since she is/was so so mentally ill, and she was not on antibiotics for long, and not on full dose. i am really wondering about these tests. i also did not see much improvement with antibiotics with her symptoms. i am really looking for some feed back. i thought the bartonella tests were pretty accurate. i hear there on "no" false positives. any thoughts are REALLY appreciated!!!!

So sorry for your frustration -have been there myself! It seems you may want to find an LLMD that treats based on symptoms and/or tests. That way you are, at least, starting treatment and seeing some improvement while tests are being done. This is what I did and it was the best decision I have made so far.

 

Was just reading info. from this LLMD and thought you might like to see her slides from a recent conference:

 

http://www.betterhealthguy.com/joomla/blog/259-biomedical-tips-and-tricks-with-amy-derksen-nd

 

Very interesting to read.

 

Your frustration tells me you are on the right track and getting closer to healing! Mother's intuition is not to be underrated! Keep healing and posting.

[MamaOnAMission]

I am still a bit confused. Her first test said she was "positive" for bartonella, and I hear that there is not question, when it comes back positive. She is DEFINITELY positive for bartonella. Well if it comes back negative, is the child POSSITIVEo7 negative, or can it be false negative?

 

Her symptoms are so weird. Not just OCD, but very odd psychotic thoughts, hallucinations, etc. There has to be something more than OCD, but now I don't even have a bartonella diagnosis. Not sure what our doctor will do, I still have to talk to him. He is an LLMD and tops in his field. I am hoping Monday, that he has some direction for us.

[KaraM]

Hi,

 

My dd tested clearly positive for Bartonella as well through IgeneX in March of last year(ordered by Dr. B. She had already been on Zithromax for close to a year for PANDAS. We added Bactrim to the mix. We then saw Dr. J. in July. He re-tested her for everything. That time the Bartonella came back negative. He did not stop the treatment though. We are still treating her to this day. His philosophy is to treat for 2 months after all symptoms have cleared.

 

When she tested negative, she was still exhibiting symptoms. It's been a slow but relatively steady climb. She would herx along the way but would usually come out stronger on the other end of the herx. I believe we are getting close to the point where we may be able to start our two month count down.

 

My dd's primary symptoms were OCD, rages/depression/emotonal lability, ADHD like behavior, some academic deterioriation.

 

What were your daughter's Lyme and other co-infection results? My dd's IgeneX results for Lyme were negative. However, this past November, when we looked back at some records from a few years ago, when Dr. B first ran a Lyme test through a regular lab, one specific Band did show up (making the test look negative to most doctors, but indicating to Dr. J. that there had been exposure to the Borrelia bacteria that causes Lyme). At that point, Dr. J. added Tindamax on the weekends in addition to her Zithromax/Bactrim mix. The theory is that the Lyme was in Cyst form due to the antibiotics she had been on. The Tindamax breaks open the cysts so the Zithromax and Bactrim can reach the bacteria. He thought that this might be the treatment that would get her to the finish line.

 

Kara

Edited March 11, 2012 by KaraM

[SSS]

My first thought upon reading the post was:

What about Lyme, have you treated for that?

Usually bartonella travels side by side with borrelia infection (Lyme.)

[Bill]

she was on antibiotic for bartonella/lyme for approximately 6 monts. not the full dose, because she was too aggressive and mean. dr. j. retested for bartonella and said she tests negative right now. seems odd to me, since she is/was so so mentally ill, and she was not on antibiotics for long, and not on full dose. i am really wondering about these tests. i also did not see much improvement with antibiotics with her symptoms. i am really looking for some feed back. i thought the bartonella tests were pretty accurate. i hear there on "no" false positives. any thoughts are REALLY appreciated!!!!

 

The test results seem pretty normal to me based on our experience and many others on this forum. Positive results are great; negative results seem to be pretty meaningless. Based on my experience, Dr. J. and any other LLMD will recommend continued treatment based on symptoms. He is very aware of the relationship between lyme/bartonella/babesia (if you test positive for one - probably have others). Six months is a long time but in the world of lyme, seems like we are talking about years in many cases. I get the sense that it's important to treat things in the right order - but - I'm not sure what that order is and whether or not it is the same for every person. I don't believe anyone really does at this point.

 

bill

[MichaelTampa]

Yes, false negative on bart very possible. Among other reasons, there are so many strains, and the immune system can be so messed up, hunting around for just this or that antibody isn't going to cover the substances the body makes in reaction to presence of various straing.

[MamaOnAMission]

My child tests positive for bartonella/Lyme and to be honest... I can't get an answe out of LLMD as to wether we are treating the Lyme. She's on o clime & Bactrian. On one visit he said this combination will target Bart. And Lyme , then on next visit he said this combination does not treat Lyme. Can't get straight answers from him.