Lyme Testing if you have elevated C3D complexes

[LNN]

Thanks everyone for your help re: lyme testing. I keep reading posts that if your child has elevated immune complexes, you can get a false negative on lyme tests. Is this true for all the tests (Western Blot, ELISA and Igenex)? Or will Igenex, by nature of covering more antibodies, still give you reliable information?

 

Son - definite Pandas. C3D = 53. No positive bands on Western blot or Elisa. Previous joint pain and cognitive fog but joint pain has resolved post-ivig and fog is improving. Previous prednisone tapers (3/4 weeks) have made him sharp as a tack (can I assume this wouldn't happen if he had Lyme?)

 

Daughter - episodic OCD but no definite link to infections, reflux and GI complaints (seeing GI specialist in 2 weeks), eosinophils normal, no clinical lyme symptoms, no joint pain, no 4 week cycle of behaviors, but C3d = 25, P41 positive on western blot. Could be H Pylori - past or present?

 

We'd need to wait another 2 months post-ivig to do anything on my son, but I'm concerned that high complexes might make the results unreliable and don't want to throw away $400 to test both kids only to get a piece of paper I can't count on. Anyone have any input?

[philamom]

I don't have any info. on the elevated C3D but wanted to say that heartburn/reflux and GI distress is on the symptom list for Lyme. Look at the symptoms of Lyme Disease "The Basics" at www.LymePa.org. You could also Call IgeneX and ask them.

Edited July 29, 2010 by philamom

[sf_mom]

Laura, I would definitely call Igenex and specifically ask how their test is more accurate than the typical Elisa and Western Blot.

 

Was your son on any antibiotics at the time of testing previously? Did you test for the co-infections at the time?

 

Remember my friend's son was negative for Lyme but positive for two co-infections and his Dr. hopes to DRAW out the positive response to Lyme via treatment. It is highly unlikely to have Ehrlicia without Lyme.

 

These are just his Lyme results:

 

IgM band 41 Indeterminate,

 

IgG band 31 Indeterminate, band 39 Indeterminate, band 41 ++

 

From what I understand those bands are very specific to Lyme and all double starred bands via Igenex.

 

I know the $400++ is hard swallow and believe me I feel your pain since we are testing the entire family. Unfortunately, I am symptomatic and extremely worried I gave them the underlying infection that created the inability to fight additional bacteria's. I just want to cry.... The only saving grace in all of this is 'ALL MY CHILDREN' are doing much, much, much better since antibiotics. I don't know about you but I had some very long talks with Dr. K about the potential of underlying chronic infection verses auto-immune. When we last spoke he was weighing it all in his mind and trying to figure out the reason for improvement on high dose antibiotics with some of the kids. Sorry, that I don't have a better answer for you on the circulating immune complexes other than they can suppress the response and produce a false negative. My friend's son does not have high immune complexes and probably still has a false negative.

 

-Wendy

Edited July 29, 2010 by SF Mom

[LNN]

Thanks Wendy. My son has been on antibiotics daily since May '09. Prophylactic zithro until Oct 09, 800 mg/day augmentin since Oct 09. His Lyme test was Mar '10. So over 6 mos. high dose abx before the test. Yes, we tested for co-infections - all negative for both kids.

 

Given all this, things point away from Lyme. I keep thinking about his response on prednisone. But the cognitive fog piece makes me want to make sure I don't over look anything. I'm just not clear how the daily abx and elevated complexes effect results.

[sf_mom]

Laura, I would think Igenex would know the answer but I can always ask Dr. Steve Harris for you when I see him on the 9th. Perhaps if you see a regression post this treatment prior to another IVIG would be the time to check for Lyme again.

Edited July 30, 2010 by SF Mom