Dr T's comments re: being positive for Lyme band P41 and PANDAS

[HT's Mom]

What if anything is the treatment for a positive band 41??

[Guest pandas16]

Western Blot test was run twice on my son (Dr. T). The first time was at onset of PANDAS and the second was three months later after being on several antibiotics. Here are the results:

1st test:

IgG: P23,P66

IgM: P41

 

2nd test:

IgG; P66

IgM: negative

 

He also ordered the erlichia, babesia, and bartonella tests through LabCorp as per my suggestion. All came back negative. My son has no symptoms of lyme and has never had a tick bite that I know of.

 

 

That's really interesting, aren't all IgM's supposed to turn into IgG's over time if in fact there is a real infection? Is your son's blood work proof of cross reactivity then?

[T_Mom]

What if anything is the treatment for a positive band 41??

 

Hi HT'sMom-- It is my understanding that P41 alone may not qualify a person as lyme positive, but may encourage additional tests to rule out lyme certainly. -- especially if physical symptoms are present.

 

TPotter--good point re: What is the percentage of people w/ positive P41 in the general public!

 

Would be interesting if those in the area of Ps research could screen for this as they do blood samples. sigh.

[MichaelTampa]

What if anything is the treatment for a positive band 41??

 

 

This depends entirely on the doctor and what else the doc sees in the big picture (symptoms, family members test results/diagnoses/etc).

 

If the doc is most familiar with PANDAS, and thinks just band 41 means it can't be lyme, and they see PANDAS-like symptoms, they may give a PANDAS-like treatment (antibiotics, perhaps IVIG, ...).

 

If the doc is most familiar with lyme, and they see lyme symptoms, they would very likely be given lyme treatment. Months ago I ran across an article on the internet giving one such lyme docs opinion saying, basically, he knows if he treats the band-41-only people who have lyme symptoms as if they have lyme, 90% get well, so he is less concerned about whether lyme is the cause and more concerned about the result for the patient. An experienced lyme doc will also have seen plenty of western blot re-tests following treatment where more bands show up positive, so that will be in the back of their mind as well.

 

All docs are going to do what makes sense to them in their experience, and so the actual treatment for those with such an inconclusive test result (band-41-only) is naturally going to vary quite a bit by the doctor.

[pixiesmommy]

dd3 is +IgM and +++IgG for 41

dd10 is ++ IgM and ++IgG

Both girls have PANDAS

 

DH is ++IgM and ++IgG

I am IND IgM and ++IgG

 

DH is not dd10's bio father

[browneyesmom]

DD 11's results:

 

IgM Result:

All negative except:

**41 kDa = Ind

 

IgG Result:

All negative except:

**31 kDa = Ind

**39 kDa = Ind

**41 kDa = ++

[aidansmom]

I thought this study was interesting

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC265062/pdf/jcm00026-0126.pdf

 

they compare particular bands in patients with Lyme disease to the normal population

 

I especially liked figure 3 which shows how the different bands compared in the 2 groups in this study. 87% of those with Lyme had band 41 + and 43% of the normal population did (if you look at Table 1 you will see that they also compared to samples of those with syphilis and 75% of those were + 41).

 

But band 39 was + for Lyme: 81%, normal: 1% and syphilis: 10.7

 

I have not thoroughly read this study and wondered if it has been discussed here or if anyone has any additional insights into it

 

Aidan was

IGM

23-25 IND

39 IND

41 +

 

IGG

30 +

41 ++

58 +

83-93 +

[Christianmom]

Western Blot test was run twice on my son (Dr. T). The first time was at onset of PANDAS and the second was three months later after being on several antibiotics. Here are the results:

1st test:

IgG: P23,P66

IgM: P41

 

2nd test:

IgG; P66

IgM: negative

 

He also ordered the erlichia, babesia, and bartonella tests through LabCorp as per my suggestion. All came back negative. My son has no symptoms of lyme and has never had a tick bite that I know of.

 

 

 

 

That's really interesting, aren't all IgM's supposed to turn into IgG's over time if in fact there is a real infection? Is your son's blood work proof of cross reactivity then?

 

I am ignorant of the lyme stuff, so I don't know how to answer your question. Can anyone else answer? Also, Dr. T actually ordered the Western Blot test three times (10/10, 1/11, 3/11). The second and third times the results were identical.

[MichaelTampa]

I thought this study was interesting

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC265062/pdf/jcm00026-0126.pdf

 

they compare particular bands in patients with Lyme disease to the normal population

 

I especially liked figure 3 which shows how the different bands compared in the 2 groups in this study. 87% of those with Lyme had band 41 + and 43% of the normal population did (if you look at Table 1 you will see that they also compared to samples of those with syphilis and 75% of those were + 41).

 

But band 39 was + for Lyme: 81%, normal: 1% and syphilis: 10.7

 

I have not thoroughly read this study and wondered if it has been discussed here or if anyone has any additional insights into it

 

Aidan was

IGM

23-25 IND

39 IND

41 +

 

IGG

30 +

41 ++

58 +

83-93 +

 

 

Good job finding this. FYI, this is the study I was referring to in the post above, so, for anyone reading this there aren't two studies--one with the numbers I quoted and one with these numbers--this is the study I was referring to but I was just going from memory.

[MichaelTampa]

.

Edited April 26, 2011 by MichaelTampa

[JenniferG]

My dd had a +41band.

[MIAS_MOM]

Another positive 41 band here.

[nicklemama]

Negative Western blots in Oct and Mar.

[sptcmom]

Here is the Bands info thread I posted on the Lyme forum. I found it to be very informative.

Dr T is very open minded and is finally coming around to this whole Lyme PANDAS thing and researching more into Lyme. He's a great doc.Needs to use more Lyme labs though. Ds's all FIVE Quest plus Labcorp Western Blots and other tests came back false negative for Lyme and Coinfections from March 2009 to August 2010. We wasted all that time just becuase most docs unaware of Lyme labs like Igenex, Specialty, Shiel etc.

 

http://www.latitudes.org/forums/index.php?showtopic=11842&st=0&p=99085&fromsearch=1entry99085

Edited April 30, 2011 by sptcmom

[MIAS_MOM]

Here is the Bands info thread I posted on the Lyme forum. I found it to be very informative.

Dr T is very open minded and is finally coming around to this whole Lyme PANDAS thing and researching more into Lyme. He's a great doc.Needs to use more Lyme labs though. Ds's all FIVE Quest plus Labcorp Western Blots and other tests came back false negative for Lyme and Coinfections from March 2009 to August 2010. We wasted all that time just becuase most docs unaware of Lyme labs like Igenex, Specialty, Shiel etc.

 

http://www.latitudes.org/forums/index.php?showtopic=11842&st=0&p=99085&fromsearch=1entry99085

This is just what i wanted to see ! I now can understand bands 58 and 41, Thanks so much, and I will take his information with me to our next ped visit. ( God help us!)