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

[T_Mom]

Hi All--

I am FASCINATED by observations expressed by Dr T.

 

He noted: 80% to 90% of the Ps children he has seen have tested positive for the P41 Band on the Western Blot. Our younger d did, and it was my understanding that P41 represents someone seeing actual bacterium w/ a tail present.

 

Dr T also noted that it was very rare to have any of the Ps patients, that he has seen, test pos. on the Western Blot.

 

He appears to speculate that the P41 may provide clues for our children.

 

HOW many of us on the forum have children who tested positive for band P41?

 

Thanks--

 

Dr T.'s Study:

"Results: Only 4 of 72 patients studied met standard

CDC serological criteria for Lyme disease, and in each of

these cases, there was evidence of concomitant chronic

streptococcal infection and/or chronic infection with Mycoplasma

pneumoniae. However, 92% of patients showed IgG

antibodies to p41 flagellin only, with 60% of patients

showing IgG and IgM anti-flagellin antibodies. Immunoreactivity

to p41 is not specific for Lyme disease, but may

reflect exposure to a number of flagellated bacteria, with

common signaling through a Toll-like-receptor-5 (TLR-5)

pathway.

Conclusions: These results suggest exposure to flagellated

organisms, and potential TLR-5 activation, is a common

and early finding in children that have a PANDAS-like disorder

as operationally defined above. CDC-defined Bb

Lyme disease is unlikely to be an exclusive explanation for a

PANDAS-like illness"

 

from (close to the end of the program pages):

http://www.childneurologysociety.org/assets/annual_meeting/2010/CNS_Program_Bklt_2010.pdf

Edited April 25, 2011 by T.Mom

[Worried_Dad]

Our PANDAS ds was positive for band 41 on the IGeneX Western Blot (IgG and IgM).

[NancyD]

My DD15 is positive for band 41 (IgM and IgG) as well as several other Lyme specific bands. So am I.

[tpotter]

Very interesting. Both my DSs had band 41 positive, and so did I. DS15 had only band 41 positive, DS 18 had 4, and I had 2 IgG and 1 IgM. DH had band 41 IgG and 2 bands on IgM.

 

But, I don't see reference in Dr. T's article about how many people in the general population have band 41 positive on testing. Did I miss that? Did he refer to that somewhere else? I think that would be significant.

[philamom]

My dd9 is positive for band 41 (plus other bands) with Igenex. But, even though band 41 is not lyme specific, it's usually one of the first bands to show up with lyme (Bb). My dd is also positive for Bartonella with Specialty lab and RMSF with Quest.

Edited April 25, 2011 by philamom

[butterflymom]

==

Edited February 3, 2016 by butterflymom

[MichaelTampa]

Very interesting. Both my DSs had band 41 positive, and so did I. DS15 had only band 41 positive, DS 18 had 4, and I had 2 IgG and 1 IgM. DH had band 41 IgG and 2 bands on IgM.

 

But, I don't see reference in Dr. T's article about how many people in the general population have band 41 positive on testing. Did I miss that? Did he refer to that somewhere else? I think that would be significant.

 

 

I have an article at home on a study of prevalence of these in the population. It was something like 40% of the general population positive for band 41, and about 80% for those diagnosed with lyme. It is on this basis that band 41 is frequently considered the LEAST specific band for indicating lyme. For example, contrast with band 39, where the difference is much more dramatic ... going from more vague memory here, but the general population was something like 2%-5% positive for band 39 whereas those diagnosed with lyme were something like 80%-90% positive for band 39. I think this study had only like 850 people in the general population category, and did not discuss geographical or other stratifications, which I think could be important. So, since 850 is such a small number and there was no discussion on what steps the took or did not take to make it representative, the numbers need to be looked at with a bit of "grain of salt", but, it's really the only data I've ever seen in this category.

[chodnett]

we are 41 positive too.

[JAG10]

From Pg 63-64; I have one girl + band 41, one negative (both seen during that 11/09-4/2010 window.) Both whose symptom elevation correlate to their antibody profile; particularly the anti-DNAse B. I realize it is reported the antineuronals causing chaos, nonetheless that correlation is there for mine just the same.

 

It appears of the pool of 181 patients, 47% did NOT have elevated strep exo titers, which is higher than the 1/3 rate reported in the past. But if I read the article correctly, the improvement rate from abx was only reported for those 53% who did have elevated titers and "improvement" was recorded for 88% of that group.

 

I put "improvement" in quotes because X% improved of significantly messed up is still....well, really messed up when it's your kid.

[Guest pandas16]

P41 IgG positive- did not treat it as Lyme.

[lismom]

My son who started as PANDAS was positive IgG 41. but he was also positive on band 31 IgM. We had the standard CDC western blot and came back neg. If we all went by the CDC standards none of our kids would be treated for a disease that hides and mutates. Dr. T's info is only valid to those who believe in the CDC's test. Which after research and discusions with Dr.'s who treat, I for one realize why my son was ill for so long and why he is on the road to recovery.

[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.

[KaraM]

My PANDAS dd has IgM Band 41 IND, but ++ on IgG Band 41 - no other bands

 

My nonPANDAS ds has IgM 41 IND, as well as 31 and 83-93 IND; for IgG, he in ++ on 49, + on 30 and IND on 39

[sf_mom]

I am positive LD via Igenex with very Lyme specific bands present 18, 34, 31 IND, and 41... We pursued further confirmatory testing and I am positive for band 31 also. I am also positive for mycoplasma and 3 viruses. I had Fibromyalgia like symptoms that are resolving with treatment.

 

All my children are serologically negative for Lyme Disease via Igenex and BAND 41 POSITIVE ONLY for two of three children. We did not unravel Lyme until we did further testing of Urine PCR that looks for DNA of Lyme and tested for co-infections. We now have positive results for Lyme/Bartonella/Babesia/HHV6/Coxsackies for our children. Our children are believed to be serologically negative and BAND 41 POSITIVE ONLY because it is congenital LD and their body does not recognize the bacteria as foreign and therefore does not produce antibodies to the bacteria. It truly takes a good LLMD to help someone determine 'more likely or less likely' the presence of Lyme/co-infections. All my children are responding to treatment. Older DS had a sudden on-set 3 weeks post annual vaccinations, strep related illness and exposure to a child with a virus. He had high ASO titers at the time. For our family, it was so much more than just strep and one child with PANDAS.

 

Unfortunately, none of the PANDAS Dr.'s are skilled enough 'YET' on Lyme Disease and co-infection. If Lyme is of concern or PANDAS treatment is not working as anticipated, I highly recommend being evaluated by an LLMD to help you make the proper determination for your child with a variety of tests.

Edited April 25, 2011 by SF Mom

[smartyjones]

the general population would largely test positive for this and that it just indicates some kind of bacteria with a flagella and is very common. I'm wondering if it could really mean that much.

i wonder if it's like so many other things that a 'healthy' individual wouldn't show symptoms but one who is compromised by who knows what can handle much less.i guess that related to the realm of IVIG i just can't seem to get. it's always made sense to me if you did it monthly -- i don't get the 1, 2, 3 times. perhaps, it bumps the immune system to deal with the troublesome things that it 'should' be able to handle, as in, most of the population has it but it's not to troublesome but this particular person is having trouble -- ?? -- like EBV.

 

my kids also test for things that traditional med wouldn't believe they have b/c 'if you really had that, you'd be very, very sick'. my thought is that some of those things affect certain people in ways different from being really, really sick. i guess like many of our kids that don't get traditional strep b/c of course, if you've got strep - you're throat really hurts or you're notably sick.

 

my ds6 -- pretty classic pandas, 'sudden' onset, high titers, positive culture -- had a completely non-reactive quest western blot -- all bands non-reactive. we did not do igenex. he wasn't healing and we consulted an integrative MD. through a type of ART testing, he tested positive for lyme -- borrelia only.

 

i just skimmed but did i read it correctly that dr t - i think the other presentation -- was hypothesizing about type of infection correlating with symptom presentation? i think there's got to be something to that so i may have been reading into it. ds6 did have quite high titers. i wonder in those with band 41 if there is a correlation with low titers - ? - just a thought.

 

for ds9, i do not have the breakdown of bands -- lab corp. the test reported neg -- but really just done for curiousity b/c we see the integrative MD. though integrative tesing, shows trouble with all TBI.

 

there was just a post on the lyme board -- really concerning mold -- but of a dr shoemaker in the chesapeake bay region. he got into neurotoxin disorders due to pfisteria outbreak in 1997 (remember that, tmom - ?). pfisteria is a dino-flagellate. i don't know if that would react for this test but a bit disheartening that dr t termed it something like "yet unknown". i think there is treatment for pfisteria -- ?

 

i know, i know -- i'm crazy woman in favor of testing for any and all toxin/bacteria/virus!

Edited April 25, 2011 by smartyjones