HELP! Igenex interpretation, AGAIN!

Been a while since I've been online, was out of town for a while with no internet access and have been very busy since I got home.

Here's my dilemma: I tested my niece through Igenex. She's been diagnosed with Lyme by LLMD. Her 3yo daughter has been sick since she was an infant, so she saw a LLMD (pediatrician) In Albany and had her tested through Igenex. The LLMD told her today that her daughter does not have Lyme. She told her that she does have Lyme, but her daughter doesn't. HUH???

These are my grandniece's results:

IGG WB:
31 +
39 IND
41 +++

IGM WB:
23-25 +
31 IND
41 IND

These are my nieces results:

IGG WB

18 +
23-25 IND
31 IND
34 +
39 +
41 +++

IGM WB
31 IND
39 IND
41 ++
83-93 IND

According to what I've learned here, they both have it. Am I wrong???
What's with this LLMD???

Thanks, Denikeef. I feel so discouraged about this...she is the only local LLMD pediatrician that I know of. I have sent many clients to her. I thought maybe there was something I'd missed...

She had problems with a state investigation in the past, but won her case...I can't imagine why she told my niece that this test was definitly negative for lyme!

So frustrated... :(

This MD was investigated by the state, had a gofundme campaign and won her case...I thought she was legitimate.

My niece definitely did not hear wrong and the MD did not confuse the two. My niece has seen many, many, MANY doctors through the years, none of whom could figure out what was wrong with her or her little girl.
I have been reassuring her that most likely her little girl also has lyme and that all would be okay once she finally got the diagnosis from a bonafide LLMD. Now, this????
I give up.

This, from the "LLMD" gofundme page:

The NYS DOH Office of Professional Medical Conduct has closed Dr. ... case without further action anticipated.

According to her lawyer, this may set an important precedent that physicians will no longer be investigated or charges threatened or levied when the issue is solely extended antibiotic therapy for patients being treated for Lyme disease (or suspected Lyme disease).

Dr. ... case demonstrates the power that the Lyme community can 'muster' when they unify behind a righteous cause.

It also is a testament to Dr. .....courage under fire as she refused to back down or 'cop a plea' when she knew she had done nothing wrong whatsoever.

Due to the generous contributions of many loyal supporters, Dr...... has been able to meet the costs incurred in engaging her lawyer to represent her. Fortunately, it does not appear there will need to be ongoing or 'open-ended' fund raising on her behalf.

Dr. .....has greatly appreciated the positive response from the entire Lyme community including colleagues, patients & families of patients & well-wishers. This response has helped to 'steel' her resolve and 'stick to her guns' in the face of a very threatening situation.

Dr. ......would like to personally thank all who lent their moral and/or financial support. Through the efforts of many people and contributors over $35,000 was raised and THE CASE IS CLOSED! "


THIS DOES NOT MAKE SENSE.

Kathie - I think the reason she is saying your grandniece does not have lyme is she only has + on 31 and 41 on the IgG. (And one band positive on the IgM - 23)
Igenex standards say if the two bands positive are 31 and 41 it is IND and can only be changed to a positive if the epitope test is done. Now, I'm not sure if they also do the epitope for IgG - they do for IgM and that was my husband's case. He paid $100 to have them do an extra test that would verify band 31 was lyme.

And for the IgM - I guess she's not considering the IND as 'weak' positives.

Your niece IgG has three bands positive: 34, 39, and 41 that's why she is saying she has lyme.

Sounds like the LLMD is not using the test as just a back-up for a clinical diagnosis.

Even Dr. Horowitz says it's significant if any one of the following bands are positive: 23(OspC), 31(OspA), 34(OspB), 39, and 83-93 kDa

Here is a link to the interview where he says this:

www.publichealthalert.org/-interview-with-dr-horowitz.html

At the Lyme Disease Summit - Dr. H. said it's very rare for band 31 to be EBV and not Lyme.

If your LLMD is diagnosing on clinical grounds, then for me, the grandniece's test would be sufficient evidence for me to continue with treatment.

But if your LLMD is using the test as the sole basis for diagnosis, then the epitope test is probably a good idea. To be honest, I'd be leary of a doctor who treated Lyme this way, seeing how unreliable the tests are.

To say the test is negative, you have to assume:

The 31kDa would be a reaction to a virus, or cross-reacting to the 41 (which Igenex admits happens, it's the reason that the epitope test is there).

41kDa could be the tail of another spirochete. There aren't a ton of spirochetes, and I've seen people say that it's not just spirochetes, but other bacteria as well. I honestly don't know if I've ever seen an Igenex without a reactive 41.

Then it gets more interesting. If the test is a negative, you have to completely ignore the 39IND, and the 23+, both of which are, as mentioned, very specific to Lyme.

Heck, if your nieces 41 was a + instead of a IND on the IgM, she'd be CDC positive.

The long and the short of it:

These are both positive tests.
If the LLMD isn't going to treat your grandniece, get the epitope test and hope its positive, or find another LLMD.

Post Edited (Mustard Seed) : 6/22/2016 7:24:29 AM (GMT-6)

I don't understand, Traveler. Stood her ground?

I thought LLMD's treated based on the clinical picture!

I told my niece that she'd finally get appropriate treatment once she saw a legitimate LLMD. I told her to stop making the rounds of specialists (rheumatologists, pulmonologists, GI docs etc etc) with her daughter, because she probably had Lyme and needed to be treated. My grandniece has a history of several tickbites, has a mother who has Lyme (probably had it while pregnant and nursing) and has had myriad health issues since she was born.

The LLMD told my niece that her daughter DEFINITELY does not have Lyme. This is crazy making!
Fortunately, my niece has done enough research (I have invited her to join us here, but she already found her own support group elsewhere) and knows enough to trust her instincts. She found another LLMD in Connecticut who is willing to treat both of them. 1st appointment...end of July. Meanwhile, my grandniece is taking steroids for persistant croup! :( They pass out steroids like candy these days!

Right? UGH!