Western Blot results from Igenex

[sptcmom]

Igenex Western Blot results for my friend's DS14

IgM only Band 41 IND

IgG Band 34 IND and Band 41 ++

Two NYC docs infectious disease specialists have told her its a totally negative result, not even a remote possibility of Lyme. So far he's had a PANDAS diagnosis, 4 IVIGs and are now suggesting plasmapharesis. This child has serious debilitating neuropsychiatric self harming symptoms.

I thought an equivocal result like this one is ruled positive by true LLMDs and further provocation with abx is done to see if the results become clearer.

Any thoughts?

Jodie

[lyme_mom]

I agree. There is no way to definitively rule out Lyme with any test result, let alone one with an indicative band 34. Some of the sickest Lyme patients do not make antibodies to lyme because they r so sick. I would not go to an infectious disease doctor for an opinion about Lyme, period, unless the doctor is an ilads doctor like the id doctor in dc, Jemsek. If this child is so sick they should be open to a trial Lyme or bartonella treatment if a llmd suspects any of these diseases.

Edited December 4, 2010 by lyme mom

[Suzan]

My dd9 had an IgM +41, IgG +41, 31IND and 34IND. Our LLMD believes she has lyme based on her symptoms (and the fact that dd8 and I are positive for lyme) so she will treat and test later to see if we draw out a positive result.

 

I believe too that she needs to see and LLMD with these results and her child's symptoms.

 

Susan

[LNN]

I thought an equivocal result like this one is ruled positive by true LLMDs and further provocation with abx is done to see if the results become clearer.

 

 

I agree. For what it's worth, we did pex and it helped a great deal, even tho my DS may have had lyme at the time. It removed the autoantibodies and it gave him relief (tho it did not remove the underlying infection, so we still had to find the lyme/bartonella and treat it before we started to see sustainable improvement. So pex may help, but it will also screw up any future testing for lyme for awhile, because you'll be removing most of the existing antibodies that would show up in any test. You'd have to wait for the body to make new ones.

 

I don't regret pex at all. But twice a day, I reach for my son's $3 bottle of bactrim and marvel at the irony that it has done more for DS than the $20,000 pex treatment.

 

I'd suggest a trip up the NY thruway or eastbound I-95 into CT to see an LLMD. But I suspect you already knew that.

[sf_mom]

He also needs to be checked for co-infections with those results. My girlfriend's son had similar Lyme results but came back positive for Bartonella and Ehrlichiosis. Now that he is further into treatment and no longer has those two co-infections they are working on drawing out a positive Lyme results.

 

-Wendy