Positive Lyme P 41 band

[JenniferG]

Hi

 

I usually post on the PANDAS wall, but have some Lyme questions. My dd7, PANDAS tested positive for the P41 band. Her PANDAS MD said we probably don't need any other testing. Last year they were negative. Should we test for anything else? Or, should I leave well enought alone?

 

Thanks.

[MichaelTampa]

Hi

 

I usually post on the PANDAS wall, but have some Lyme questions. My dd7, PANDAS tested positive for the P41 band. Her PANDAS MD said we probably don't need any other testing. Last year they were negative. Should we test for anything else? Or, should I leave well enought alone?

 

Thanks.

 

 

That result does not scream lyme, but does not clearly say there is no lyme either. [Although, some lyme docs do treat a positive on band 41 only as lyme, with the idea that most patients get better from the treatment, and their goal is more to help the patient than to prove what condition they had. Of course, if/when they don't respond to lyme treatment, then they need to keep looking for other potential causes.] What you might do depends a bit more on the details of your situation--what leads you to believe PANDAS is involved, what testing has confirmed it, what treatment has been given, what was the response to treatment, what symptoms are there that aren't typical PANDAS (such as chronic fatigue or joint pain)?

[sf_mom]

Two of our children were band 41 positive only and we choose to do additional testing with an LLMD (after a year of PANDAS treatment for our older son). We did end up finding Lyme/co-infections and all three of our children are being treated for congenital Lyme/Babesia/Bartonella. I believe it is very important to rule out chronic infection as best possible in advance of PANDAS diagnoses. If chronic infection is involved often the child does not fully recover from PANDAS treatments of PEX/IVIG and low dose prophylactic antibiotics.

 

Some easy to do 'additional' testing would be binding immune complexes C3A and C4A and perhaps labcorp CD57 (not always reliable in young children). These might help give you an indication.

 

You could also provoke a little with your older child to see if they herx or become more symptomatic with Samento. http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=5 Samento is a very powerful herb for Lyme. You would start out with one drop in juice in the am/pm and work up toward 15 drops am/pm over the course of two weeks. Watch for an increase in existing symptoms and potentially new symptoms. Perhaps even a complaint of joint pain, headaches, fatigue. If there is even the slightest herx response I'd then make an appointment for LLMD to investigate further.

 

We found the Lyme via Urine PCR testing and provocation with antibiotics and not antibody testing. A good LLMD could help with particular protocol and testing. I believe you have 3 1/2 year old twins.... We do too and thankfully one of them did produce antibodies and is positive for co-infections as well. So, if might be helpful to test the other children as well if they have even mild symptoms.