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Posted

I'm new to the LYME forum, my sons have been suffering from PANDAS symptoms for years undiagnosed. The last few years have been under treatment and doing pretty well for the most part, but never back to baseline. They both present differently with PANDAS symptoms and the more I research the more I keep coming back to LYME.

 

My kids have a postive ANA titer and so do I. I switched from Negative to postive on the test 2 years after my youngest son was born and my health changed for the worst. A lot of my symptoms fit what I have read about LYME and ofcourse my sons have every PANDAS symptoms between them my youngest is much more severe.

 

Are positive ANA titers common in LYME? Rheumatologist said I do not have Lupus and that the test is non-specific but I have high sed rate indicating inflammation and so do my kids. Pediatric rheumatologist said the same thing about my kids and recommended ibuprofen. So we don't fit the Lupus symptoms at all.

 

I want to get Igenex testing but its expensive and from reading this forum not sure it is really conclusive. Like PANDAS seems like clinical diagnosis is what we should rely on.

 

Please let me know if this is a common finding in LYME. Just beginning to understand and explore possibility of Lyme and co-infections. Thank you.

Posted

My son's ANA is normal, don't think we ever tested my DD. Both are clinically lyme, but DS also has a clinical Pandas dx. Clinically, I think you can advocate for either based on such a high symptom overlap. I think what makes some families opt for lyme (speaking strictly from a clinical picture) is that a lyme protocol seems to produce better results. But then, most ultimately end up doing labs to confirm their suspicions and reassure that it's the right course.

 

There are labs you can run that are covered by insurance (C3a and C4a immune complexes, CD57 (but not sure how reliable this is for kids), bartonella, ehrlichia and babesia labs through Specialty Labs - a division of Quest). These are things you can run before Igenex (tho keep in mind many insurance cos will reimburse you for 50-80% of the Igenex test - it's just that you have to pay out of pocket up front and seek reimbursement on your own). And you can get a 15% discount from Igenex if you test more than one family member at the same time.

 

As for ANA, I know a few Pandas and/or lyme kids who have elevations. But I don't think it tells you much. Just that something is amiss. But not what to do about it. I'd probably speak with a doctor about getting the other labs run or consider Igenex for piece of mind/direction. There's also a new lab test that can culture spirochettes from a blood sample - which removes any doubt - if you can see a spirochette, no debate about whether you have lyme. But it too only has an 80% accuracy rate - no false positives- a spirochette is positive, no debate- but 20% could get a negative and still have lyme (if I understand their stats correctly). Unfortunatley, it's almost $600 and not yet covered by insurance.

Posted

My daughter (lyme/bartonella) has had two positive ANA (speckled pattern) titres. Her lab results read that the "speckled pattern is consistent with mixed connective tissue disease, scleroderma and Sjogrens Sicca complex". Other tests came back negative for lupus. These tests were run by her pediatrician before I suspected lyme and contacted a LLMD.

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