Lyme

[Betty04]

My son is currently 4 weeks post IVIG. I had contacted Diana P to see if she could connect me with other mom's of PANDAS kids with similar histories as my son. In brief, my son is 5 years old with a tic only presentation and low IgA, IgG,and IgM... depending on the immunologist he is either healthy(yeah right!) or immune deficient (we have consulted 4 immunologist with 4 different opinions!). Diana was kind enough to put me in touch with 3 moms who have children with tics only. Well all 3 said to me have your son tested for Lyme as all 3 of their children have co-morbid Lyme and PANDAS. Our history is that we used to live in CT (Lyme central!) and now live in Northern CA. My son tics developed while we lived in CT, we had a Western blot (I'll post those results below, considered negative?), and subsequent to this Western blot he did have a tic bite. The tic was definately latched on as he woke up one morning with it enbedded on the outside of his ear. I took the tic to our local health department. They told me it was not a deer tic that typically carries lyme but a dog tic. They told me this type of tic could carry rocky mountain spotted fever but they would not test for it since we were on the east coast and unlikely to be present. Here are my son's results from IGENEX in 2/08:

 

 

IfA, B BURGDORfERI G/M/A 1:40 TITER

INTERPRETATION Of ANTIBODY TITERS:

<1 : 40 NEGATIVE

1: 40 INDETERMINATE = OR >1:80 POSITIVE

 

18 kDo Negative

22 kDa Negative

**23-25 kDar Negative

28 kDar Negative

.30 kDar Negative

~*31 kDo INDETERMINATE

**.34 kDo Negative

**39 kDa +

**41 kDar +++

45 kDa! Negative

58 kDat Negative

66 kDOl +

73 kDOl Negative

**83-93 kDOl Negative

 

 

Does this warrant further investigation or is this a negative lyme? And truthfully maybe we were neglectful not retesting after the tic bite... but do I need a lyme expert to fully evaluate any co-infections? Thanks for any feedback, I just really was struck by Diana putting me in touch with 3 moms of tic-only presentations and they all have lyme!

Edited May 26, 2010 by Betty04

[KeithandElizabeth]

I would definitely suggest to consult with a LLMD. And you have two great doctors in San Francisco, Dr. Harris and Dr. Strickler. Many lyme doctors consider anything with Indeterminate and 41 to be potentially positive. Indeterminate means that there was "something" there on the band. My daughter presented with mostly Tics (and mood lability) and her tics have almost dissipated with the lyme treatment. And, we live in Colorado, which is considered to be one of the lowest lyme states in the U.S.

 

Of course, I am biased now that both of my children have lyme and PANDAS. I just don't think it could hurt to further evaluate.

 

Elizabeth

[Betty04]

Thanks Elizabeth. I am glad to know we have good docs in the area for Lyme. After hearing your experiences I am starting to think there is no doubt we need to further investigate Lyme and co-infections. Thanks for replying so quickly, I have been obsessively checking for responses since I posted.... when I re-read my post I think, of course look into Lyme, duh!

[MichaelTampa]

Lyme needs clinical evaluation, not just the tests. But, if I were to come to any opinion from just the test there, it is showing positive lyme. You've got 3-4 positive bands, including clear positive on band 39, most specific for lyme. Yes, defininitely look into, good to get a well-respected lyme doctor and see what they suggest.

 

Michael

[coco]

Hi Betty - I agree with all the others...get in touch with a good Lyme's dr. We live in CT and my dd tested positive for band 41 and IND on two other bands and our lyme dr (Dr. Charles Jones) said to definitely treat for it and recommended an alternate antibiotic. I think that these co-infections hold the healing back for pandas so it is critical to get rid of those. Good luck!

[smartyjones]

Does this warrant further investigation or is this a negative lyme?

 

 

betty - my son had a completely non-reactive western blot in june '09. i didn't feel he seemed on a good healing path in jan '10 after we had done much work for strep and he was culturing neg for strep. i asked one of our dr's if we should re-investigate lyme. he referred us to another dr who thought simply based on his symptoms, he very well could have lyme. he does something called auricular medicine and with his testing, my son tested positive for lyme. he has not really had tics (only some slight things that only in retrospect were possibly tics), completely behavioral symptoms.

 

please keep us posted on the results!