Need smart PANDAS/LYME Moms to weigh in..

minimaxwell · August 2, 2012

Wondering if anyone would mind giving me their opinion? I tend to trust groups like this more than most docs My daughter has PANS,fatigue is a big part of it (along w/ OCD,anxiety and panic). She got 70% better with lVlGn and currently takes Augmentin 500 BlD Negative Western Blot with Quest so we did basic Igenix 4 months post lvlG lGG **23-25 **31 **34 **39 **41 kDa + **83-93 lGM **23-25 **31 kDa IND **34 **39 **41 kDa IND **83-93 So the only one that really worried me was band 31. We did an additional band 31 epitope that is 95% accurate. It was NEGATIVE. So my Question is-- can I relax now and say she doesn't have Lyme. Also never herxed from abx (aug. & doxy) or lVlG. Never got worse with prednisone. Thanks!

rowingmom · August 2, 2012

I'm not sure about the smart part. All I can do is give you DD10's Igenex results. If the LLMD and I had this figured out, I would be so happy!

DD10 began ticcing (motor/vocal)(dx probable Tourettes) in 2008 after a bite with atypical rash (non-EM). After much thinking I also realized that she had her MMR booster (our Family doctor reassured me, I was very skeptical and totally uninformed) in the summer of that year as well. She showed other PANS symptoms - rages, inability to concentrate (dx ADHD), poor executive function, urinary frequency with bed wetting, decline in fine motor skills, decline in ability to socially interact (dx Aspergers). These symptoms would wax with strep throat infections and wane with Abx treatment. After a while she was reacting to viral infections as well and with no abx treatment for those, all these symptoms became her new normal (finally dx as PANDAS, but we were told to live with it, as no treatment is available in Canada unless the patient is completely incapacitated).

Before all of this happened she had displayed pretty much all of the symptoms Dr Jones lists as belonging to children born with congenital lyme (light/sound/touch sensitivity, hypotonia, low growth percentile etc.). She lost her speech and a large part of her fine motor development with her first MMR vaccination. 3 years of private speech therapy for oral apraxia and occupational therapy for motor skills had gotten her back to some level of normal.

Bartonella pain symptoms began Jan 2010 after a stressful family situation.

A light went off one day while I was reading this forum (I can not thank these parents enough for being so informed and for sharing their research) and I found an LLMD to treat her in NY. Her Igenex test was PCR positive for bartonella. The lyme IgM was IND for 41 kDa and the lyme IgG was IND for 34 kDa and 39 kDa, ++ for 41 kDa.

Our LLMD feels she is not testing highly positive for lyme because it is most probably congenital and DD's immune system does not recognize it as foreign.

DD has never had IVIG. She has had herx reactions to bactrim, biaxin, rifampin, tindamax and A-Bart.

Hope that helps.

Edited August 2, 2012 by rowingmom

sf_mom · August 2, 2012

We did the Epitope Band 31 as confirmation for me and it was positive. My understanding of the test is when positive it is meaningful and when negative it does not confirm there is no Lyme. You might PM Philamom about their experience with the test. Additionally your DD's symptoms seem very Bartonella like... have you tested for co-infections yet?

philamom · August 2, 2012

Before we saw an LLMD I asked our ped to run the Igenex western Blot and complete panel on my daughter. The Igenex WB IGM was positive, but nothing else. One of her positive bands was 31. I was skeptical so I ran the 31 epitope confirmation, which was negative. I decided to move forward with an LLMD appt anyhow. In our case, the LLMD said he would've never ordered it since she had other significant positive bands as well. In December, my daughter had a positive culture done with Advanced Labs, which gives you a picture of the spirochettes cultured in the blood sample.

also- even though my daughter's co-infections were negative with Igenex, her LLMD found Bartonella & RMSF through another lab.

Suzan · August 2, 2012

My dd when she was first tested by Igenex had negative test results. Her IgM had only band 41 positive and IgG results were below. Based on her symptoms and history (and a mom and sister with positive Igenex testting) she was treated. 3 months later we did another Igenex test and her test had become positive. Her primary symptoms were anxiety and fear, just right OCD, explosive emotions and limb pain.

IgG

**31 IND

**34 IND

**41+

HUGS!

Susan

Sign In

Need smart PANDAS/LYME Moms to weigh in..

Recommended Posts

minimaxwell

rowingmom

sf_mom

philamom

Suzan

Create an account or sign in to comment

Create an account

Sign in

Browse

Activity

Support