Update on our PANDAS to Lyme journey

[kmom]

DD and DS were dx'd w/ PANDAS last May/June. Honestly, my DD fit the mold b/c of her stubborn strep throat infection, but my son fell into that dx b/c he ended up w/ neuropsych symptoms a month after DD started w/ symptoms and he had had a positive strep culture months prior but asymptomatic. Both dx'd w/ specific strep immuno deficiency hence they had IVIg in Oct. Symptoms turned even more Lyme-like after that. Kids were dx'd w/ Lyme and Bartonella a month ago right as I was getting major joint/bone pain, nerve issues, extreme fatigue, etc after my flu vaccine. Our LLMD started treating me due to a clinical diagnosis b/c I was in bad shape. I went thru herxing after starting doxy. Yesterday got my CD 57 score. Haven't talked to my LLMD yet but my score is 38. Does that score just make the Lyme/Bartonella dx more believable or is that number reflecting my elevated Myco P results? I was 4.64 for Myco P in May of this year (we tested whole fam for strep and myco P titers when DD was dx'd with PANDAS. I got rechecked in Sept. when I was confused as to why kids were not improving w/ PANDAS treatment. My Myco P was 4.74. I wonder where I am at today. My Quest Labs for WB, Bartonella, C6 Peptide, etc. were all negative. But just being on doxy and supplements, I'm improving...not well but better.

 

My DS6 also had the CD 57 test. He ironically came back w/ a 38 also. I hear that this test isn't always accurate in kids. LLMD reads his Igenex as positive even tho CDC doesn't and treatment is making things better. Thank goodness for Rifampin and Diflucan that was added to their Augmentin and Zithromax that Dr. B had them on for PANDAS. Both kids are responding now that we're targeting their Bartonella infection. I also think Low Dose Naltrexone is helping them too. Just so glad to be treating the whole picture and not just the PANDAS. We were going in circles. Rages and meltdown so much better thank goodness! I pray we continue healing as well as all of you.

[MichaelTampa]

All I have heard regarding the CD57 and bartonella is that bartonella does not affect that score, so I would not read into the CD57 score anything about whether you have bartonella or not. I have heard Dr. Burrascano say that he believes a CD57 score below 60 indicates borrelia (lyme) PLUS mycoplasma. He sees mycoplasma as opportunistic, and suggests treating the rest of the problem (lyme and whatever else) and believes the body will eventually take care of the mycoplasma once the body gets stronger following other treatments.