Help with daughter's Igenix Results

[eljomom]

Hello,

 

Someone on the pandas forum told me I should post my daughter's Igenix results here for help understanding them. Dr. Latimer's receptionist (the pandas neuro. we saw last month, who ordered the tests after daughter's CamK was very high, and also LabCorp Lyme had IgG and IgM band 41 positive) left a message that her results were "negative." I don't want to force my daughter into a Lyme diagnosis, but just want to understand these results. Looks like according to Igenix they are negative too. Daughter will be 7 next week. We live in Virginia--Shenandoah area. Her symptoms were ocd-ish stuff past couple years, then a few tics late spring. High fever in June for one day, then within a week or two, multiple tics from head to toe, with no waning. Also had impetigo off and on all summer. Thanks for any info.

 

IFA B Burgdorferi G/M/A 1:40 Titer

 

CD57 NK Test "Lymphocyte count is above normal limit. test result may be compromised."

CD57 NK Cells Absolute CT 243

CD57 NK Cells (5 Lympho) 5.40

 

Lyme IgM Western Blot:

 

IGENIX IGM RESULT Negative

CDC/NYS Result Negative

 

18 -

22 -

**23-25 -

28 -

30

**31 ++

**34 -

**39

**41 IND

45 -

58 +

66 +

73 -

**83-93 IND

 

Lyme IgG Western Blot:

 

IGENIX IGG RESULT Negative

CDC/NYS Result Negative

 

18 -

22 -

**23-25 -

28 -

30 +

**31 -

**34 IND

**39 -

**41 ++

45 -

58 +

66 -

73 -

**83-93 -

[Suzan]

Our LLMD would consider this a positive test (or conservatively, she would consider, with symptoms present, it is worth treating and test later to draw out the positive result). Most LLMD's are now considering any positive band that is lyme specific to be a positive test. I'll have to find the post that explains each band but I think 31 and 83-93 and maybe 58 are lyme specific. Don't quote me on those though, I think SF Mom posted the band specific results.

 

HUGS!

 

Susan

[Suzan]

Oh here, I found this from SF Mom's post.....

 

This is what Dr. Ann Corson Pediatric Lyme Specialist says about WB results.

 

"A positive Western Blot need only show one species-specific band to demonstrate exposure to Bb therefore confriming a clinical diagnosis of Lyme Disease.

 

These species-specific bands are: 18, 23-25, 31, 34, 39, 83-93"

 

 

 

Western Blot Bands description:

 

9 cross-reactive for Borrellia

12 specific for Bb

18 unknown

20 cross-reactive for Borrellia

21 unknown

22 specific for Bb, probably really the 23/25 band

23-25 outer surface protein C (OspC), specific for Bb

28 unknown

30 unknown; probably an outer surface protein; common in European and

one California strain

31 outer surface protein A (OspA), specific for Bb

34 outer surface protein B (OspB); specific for Bb

35 specific for Bb

37 specific for Bb

38 cross-reactive for Bb

39 is a major protein of Bb flagellin; specific for Bb

41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia

45 cross-reactive for all Borellia (sometimes people with Lyme who have

this band positive also have the co-infection Ehrlichiosis)

50 cross-reactive for all Borrellia

55 cross-reactive for all Borrellia

57 cross-reactive for all Borrellia

58 unknown but may be a heat-shock Bb protein

60 cross reactive for all Borrellia

66 cross-reactive for all Borrelia, common in all bacteria

83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane

93 unknown, probably the same protein in band 83, just migrates differently in some patients

[sf_mom]

Our Dr. would also treat with those results and pursue alternative testing. Your daughter definitely has some very Lyme specific bands plus titer response and would probably respond well to proper antibiotic treatment. I would recommend making an appointment with a good LLMD to investigate further especially for co-infections.

 

If you are willing to travel to Dr. Latimer there are two very able LLMDs in that particular area and will PM you their names.

 

-Wendy

Edited December 13, 2010 by SF Mom

[sf_mom]

Where do you live we might be able to refer someone closer.

 

-Wendy

Edited December 13, 2010 by SF Mom

[momofgirls]

I agree with the other's who have posted...lyme lyme lyme. As Keithandelizabeth said there are many reasons for low antibody response. Elevated immune complexes, hidden in the tissues and organs. Often times these results become more positive with treatment. Dr. Latimer is great but I would definately see and ILADS doctor for treatment. Visit the ILADS.org website for doctor referral and information. Good luck and keep us posted, its a journey.

Kim

[eljomom]

So why would Igenix say the results were "negative?" I thought they were more geared towards saying things are "Lyme" than not.

How long will it take to get in with a Lyme doc? We live in Warrenton, VA, which is west of DC. Dr. L is about an hour 15 from us, so not bad. Any in Virginia? Specifically pediatric??

Thanks,

Wendy

[sf_mom]

You've got a lot of catching up to do with regards to Lyme politics and how CDC established guidelines for 'reportable' Lyme cases...... You have a negative result on the Igenex due to the fact that your child is not meeting CDC reportable 'status'. Two recommendations: read Cure Unknown, purchase the documentary on Lyme 'Under Our Skin' for $34.00 http://www.underourskin.com/store_home.html.

 

Also, here is an on-line video link that gives you a brief overview on Lyme from ILADS website.... Dr. H does discuss manifestations in younger children briefly (he is our Dr.) http://www.ilads.org/lyme_disease/lyme_videos_1_d.html

 

Here is another three links discussing WB results.

 

http://www.latitudes.org/forums/index.php?showtopic=10804&pid=91617&start=&st=#entry91617

 

I did refer two wonderful Dr.'s in DC area via PM but unfortunately I don't think there is anyone closer.

 

-Wendy

[eljomom]

Sorry to keep asking questions, but doesn't Igenix use a different criteria than CDC? I mean, they are BOTH listed as negative on the IGenix results---Igenix negative AND CDC negative.

 

You've got a lot of catching up to do with regards to Lyme politics and how CDC established guidelines for 'reportable' Lyme cases...... You have a negative result on the Igenex due to the fact that your child is not meeting CDC reportable 'status'. Two recommendations: read Cure Unknown, purchase the documentary on Lyme 'Under Our Skin' for $34.00 http://www.underourskin.com/store_home.html.

 

Also, here is an on-line video link that gives you a brief overview on Lyme from ILADS website.... Dr. H does discuss manifestations in younger children briefly (he is our Dr.) http://www.ilads.org/lyme_disease/lyme_videos_1_d.html

 

Here is another three links discussing WB results.

 

http://www.latitudes.org/forums/index.php?showtopic=10804&pid=91617&start=&st=#entry91617

 

I did refer two wonderful Dr.'s in DC area via PM but unfortunately I don't think there is anyone closer.

 

-Wendy

[Suzan]

Sorry to keep asking questions, but doesn't Igenix use a different criteria than CDC? I mean, they are BOTH listed as negative on the IGenix results---Igenix negative AND CDC negative.

 

 

It is possible to get a "probably" that is still negative based on the Igenex criteria. The lyme could be hiding and dormant or your child could not be producing good antibiodies for the test to read. If your child does have lyme, after a good round of lyme antibiotic treatment, a positive result is often drawn out. I guess Igenex had to designate some standard and the LLMD's are still reading yet another standard.

 

One of these is the case with my dd9. She has a positive and two IND on lyme specific bands so Igenex said it was negative. But her sister and I both had positive Igenex tests. Based on that, and her clinical presentation, she will be treated for lyme. We'll test later and will hopefully see it positive. I say hopefully since this will give our LLMD what she needs to move forward with no question, even though she doesn't really have any doubts.

[sf_mom]

The only thing Igenex does differently is test a wider range of Lyme specific bands. The CDC guidelines dropped those specific bands when a vaccination for Lyme was available and produced FALSE POSITIVES. The vaccination has since been taken off the market and the CDC never revised guidelines.

 

There is a lot of information about the above... you just got the cliff notes from me and hope it helps.

 

-Wendy

[momofgirls]

Eljomom

I see what you are asking...even Igenex reports your daughter's results negative. We are more concerned with the lyme specific bands for which your daughter tested either positive or IND. For example on her igm she is double pos on band 31 and IND on 41. Band 31 is considered very lyme specific and if the 41 was positive instead of IND then her test would be considered positive by Igenex. The IND band suggests something weakly triggered band 41. Same goes for her IgG portion... If I remember right she was IND on band 39 (another lyme specific band) and band 41 was actually positive on this portion of the test. So if there was a little more response on band 39 it would also have been considered a positive test. Also bands 83-93 and band 58 are lyme specific bands. There was reactivity in those as well. Long story short, a good lyme doctor will look at which bands she reacted to and if there are lyme specific bands with symptoms then they will usually do further testing or treat. There are many factors that should be considered in reading the western blot and diagnosing lyme but a good doctor will help with this.

Not trying to push anyone in to a lyme diagnosis but these results look suspicious to me.

 

Sorry to keep asking questions, but doesn't Igenix use a different criteria than CDC? I mean, they are BOTH listed as negative on the IGenix results---Igenix negative AND CDC negative.

 

You've got a lot of catching up to do with regards to Lyme politics and how CDC established guidelines for 'reportable' Lyme cases...... You have a negative result on the Igenex due to the fact that your child is not meeting CDC reportable 'status'. Two recommendations: read Cure Unknown, purchase the documentary on Lyme 'Under Our Skin' for $34.00 http://www.underourskin.com/store_home.html.

 

Also, here is an on-line video link that gives you a brief overview on Lyme from ILADS website.... Dr. H does discuss manifestations in younger children briefly (he is our Dr.) http://www.ilads.org/lyme_disease/lyme_videos_1_d.html

 

Here is another three links discussing WB results.

 

http://www.latitudes.org/forums/index.php?showtopic=10804&pid=91617&start=&st=#entry91617

 

I did refer two wonderful Dr.'s in DC area via PM but unfortunately I don't think there is anyone closer.

 

-Wendy

Edited December 14, 2010 by momofgirls

[sptcmom]

Eljomom

Its a hard decision and tons of info to digest. We were on the PANDAS path too as were many moms here and my DS still reacts to strep. It took 3 months for me to accept and pursue the possibility of lyme.Thanks to the persistence and suppport of so many wonderful moms here.

I did heavy duty Igenex testing for my DS- complete coinfection panel and complete lyme panel and over a thousand dollars later Igenex ruled everything negative. We had many IND band and Bartonella was equivocal meaning = 1:20.

I was overjoyed, relieved, our local DAN doc also an ILADS member (NOT LLMD)said it was all negative and done.

But DH and I decided to keep our appointment with Dr Jones and it was the BEST thing we could've done for our DS at this point.

See, the equivocal for Bartonella was because Igenex testing doesn't go further than that. Dr J sent blood to another lab that goes further and DS's Bartonella titers were actually 1:245 which is pretty high. We started treatment and for the 1st time in 6 years I've seen my DS emerge and begin his journey towards healing.

Please, review all the info, read "Cure Unknown". Lyme is sickeningly political. NJ has lost several good LLMDs to insurance bullying or their affiliated hosp bullying to follow CDC stds and pretend chronic Lyme or coinfections don't exist. Some very good LLMDs have gone over to the "dark side" to maintain their affiliations with insurance carriers and hosp.

Its worth checking out. Lyme is a clinical diagnosis ater all. Not trying to push towards Lyme at all. I don't think anyone would but its worth checking as a rule out and checking how its supposed to be checked out not just lab work, a good LLMD.

Jodie

[eljomom]

Hi Jodie-

Can i ask what your sons symptoms were?? My daughter has NO joint pain, headaches, etc....JUST the ocd/ major tics/ hyper and sep. anxiety.

My fear is that what I've heard is LLMD's basically are totally tunnel-vision lyme---if you go to one, you WILL be treated for Lyme.

 

Eljomom

Its a hard decision and tons of info to digest. We were on the PANDAS path too as were many moms here and my DS still reacts to strep. It took 3 months for me to accept and pursue the possibility of lyme.Thanks to the persistence and suppport of so many wonderful moms here.

I did heavy duty Igenex testing for my DS- complete coinfection panel and complete lyme panel and over a thousand dollars later Igenex ruled everything negative. We had many IND band and Bartonella was equivocal meaning = 1:20.

I was overjoyed, relieved, our local DAN doc also an ILADS member (NOT LLMD)said it was all negative and done.

But DH and I decided to keep our appointment with Dr Jones and it was the BEST thing we could've done for our DS at this point.

See, the equivocal for Bartonella was because Igenex testing doesn't go further than that. Dr J sent blood to another lab that goes further and DS's Bartonella titers were actually 1:245 which is pretty high. We started treatment and for the 1st time in 6 years I've seen my DS emerge and begin his journey towards healing.

Please, review all the info, read "Cure Unknown". Lyme is sickeningly political. NJ has lost several good LLMDs to insurance bullying or their affiliated hosp bullying to follow CDC stds and pretend chronic Lyme or coinfections don't exist. Some very good LLMDs have gone over to the "dark side" to maintain their affiliations with insurance carriers and hosp.

Its worth checking out. Lyme is a clinical diagnosis ater all. Not trying to push towards Lyme at all. I don't think anyone would but its worth checking as a rule out and checking how its supposed to be checked out not just lab work, a good LLMD.

Jodie

[KeithandElizabeth]

Elijomom:

 

A good well known LLMD will look at ALL infections because each infection is targeted with different antibiotics.

 

For instance, our LLMD has seen 6 kids with 'PANDAS" symptoms and only 3 had lyme disease and he diagnosed the other three with mycoplasma plus strep or mycoplasma along with a virus. Mycoplasma is second to lyme in terms of the fact that it lacks a cell wall and can be stealthy.

 

i think it is critical to fully rule out lyme disease before proceeding with the typical PANDAS treatment.

 

Elizabeth