negative lyme and strep test

[momto8]

I have a lyme literate doctor. This spring my dd (4) was tested for lyme and got 2 positive bands and was treated. We see a peds. Neurologist on the 12th of Oct to address the tics.

Until then, I am wondering more about the PANDAS. What should I ask the Dr about the tests that he did? What should I make sure that he does to cover all angles? He is very open and willing to explore all the possibilities of a co-infection, but I just want to make sure that he does everything he can. He told me himself that he knew about PANDAS, but had never seen a case.

 

[msimon3]

Do you recall which bands were positive and which lab you used?

 

If you were positive on Lyme, you might want to focus your efforts there. Here is a list of common coinfections: https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/

 

There are tests for these coinfections and some of these tests have specificity (false positive) or sensitivity (false negative) percentages that should be considered with any result.

 

One line of testing that was very helpful for us was to run monthly red and white blood cell panels. We saw a trend in those test that indicated a sustained infection, and we eventually hit on a treatment that reduced the symptoms and also indicated resolution of infection on the white blood cell panel.

[mama2alex]

With Lyme, the devil's in the details. Here are some additional things to consider with regard to the Lyme:

- Did the doc test for co-infections?

- Did they look for other issues that often accompany Lyme and can cause neuro symptoms - chronic viruses, mold, methylation, vitamin deficiencies, heavy metals?

- What was the treatment? What antibiotics, supplements?

- how long did they treat? How did they determine the Lyme (and coinfections) we're completely gone?

 

I'm posing these questions because the idea of treating Lyme for a few months and then stopping when your dd is still symptomatic sends up all kinds of red flags. My son has needed 5 years of rotating abx and other medications for Lyme and co. We stop abx in a month, but even then he'll still be treated with herbals and supps for a time.

 

I'm wondering if you are truly finished with the Lyme. PANDAS and Lyme/coinfection symptoms overlap A LOT, and most kids need to be treated for years.