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More thought on the p41 IgG/M observation


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I call the patients who ONLY show p41 IgG/M positivity "Lyme-like illness" just to keep an open mind.

 

I'm aware this could be Borrelia burgerdorfi (Bb) Lyme disease. In fact, with this finding it's our obligation to do the best we can (and it's very hard, I know) to rule Bb infection in our out.

 

 

However, p41 is a very interesting protein. It is called FLAGELLIN, so these patients have anti-flagellin antibodies.

 

The p41 is a major component of the bacterial tail found in those bacterial that are flagellated, i.e. have a motile tail, similar in function to that on a sperm cell.

 

Now p41 is found on many bacteria that (seemingly) have nothing to do with what generally think about. It is NOT found in streptococci or mycoplasma, so infection with those can't be confounding this result.

 

Spirochetes, in general, are flagellated, so there are many possible non-Bb candidates.

 

 

 

BUT THE PLOT THICKENS ...

 

 

p41 is found on many enteric (pathogens such as Campylobacter, Giardia, etc.)

 

The interesting thing is that the immune response to p41 is HIGHLY specific. p41 activates Toll-like receptor #5 (TLR5), and another (minor) pathway. Furthermore, p41 is the only known activator of TLR5.

 

 

 

Recently, it has been shown that TLR5 knockout mice develop severe colitis. It is now widely believed that the physiological function of TLR5, which is highly expressed in gut endothelial lining, is to protect us from nasty food-borne bacteria.

 

http://www.ncbi.nlm.nih.gov/pubmed/18066550

 

 

 

Now, is there any example of a flagellated enteric pathogens leading to a NEUROimmune response - absolutely! Camyplobacter is the major cause of Guillain-Barre syndrome (don't worry if you don't know what that is)

 

http://www.ncbi.nlm.nih.gov/pubmed/20157729

 

But pathogenic Campylobacter, while flagellated, plays a trick on the immune system to avoid TLR5.

 

 

So this could be the link to stomach pain experienced by many of our patients before the onset of PANDAS. See Dr.K's discussion on "adolescent variant" of PANDAS!

 

http://www.webpediatrics.com/pandas.html

Dr. T., Have you ever tested your patients who are band 41 positive with the Igenex test to see if they have bands 31 and 34 also?

 

No, I literally began finding this over the past few weeks.

 

If you just ask for "Lyme titers", you will come up empty as Western blot done only as a reflex if titer exceeds a pre-defined threshold (<0.91 in my geographic area).

 

Now I routinely ask for LYME WITH WESTERN BLOT, and we find the p41 IgG and IgM bands in almost all "PANDAS" patioents (LabCorp testing in most patients).

 

There is so much BS about lime out there I have to follow my gut instincts (no pun intended)

 

You bet these patients need thorough Igenex testing for p31 and p34 at least. Would you also recommend the Igenex co-infection panel?

 

Also, can you send me any contact information on Dr. Charles Ray Jones? (you can reach me best at trifmd@gmail.com)

 

I'm going to start to screen for common flagellated enterics as well.

 

Dr. T

 

That is interesting. I told my lyme doctor about this today. Your observation dovetails with my lyme doctor's comment that 60 to 70 percent of the kids he treats with PANDAS are also infected with lyme or a co-infection of lyme. The lyme specialists we use are more than wiling to share their knowledge with other doctors. Both my doctors allow other doctors to come shadow them to learn about treating lyme. I will email you contact info for Dr. Jones and my local holistic lyme MD. Dr. Jones does a lot of testing for lyme and the co-infections every time we see him. He repeats the tests after antibiotic treatment b/c sometimes a negative test turns positive with treatment. Apparently the co-infection tests are highly unreliable too-you can have it but not test positive. Tomorrow I will pull out my kids' tests and note which tests he runs and email you.

Lyme Mom

 

Dr. T, These are the tests that my lyme specialist doctors ran on my kids:

Igenex Western blots (igg and igm) and Specialty Labs Bartonella Henselae Igg and igm abs. Also Dr. Jones tested for other coinfections with babesia fish (rna) and babesia duncani antibody panel from igenex. He also tested for mycoplasma Pneumoniae igg and igm, Human Granulocytic Ehrlichia HGE, E chaffeenis-hme (monocytic) igg and igm and mono and epstein barr and strep tests from labcorp. One note of caution-these co-infection tests are unreliable b/c there are so many strains of these co-infections. For example, there are 13 known strains of Babesia and they can only test for two. My son tested negative for Bartonella at least 4 times and yet he clearly has it b/c he didn't get better until rifampin was added to his antibiotic regime. Dr. Jones would check him for a Bartonella rash at every visit (cat scratch marks on the torso). One day 18 months into his lyme treatment it finally showed up, an unmistakable Bartonella rash on his chest. His doctors think it was part of a herx or die-off.

lyme mom

 

Do you know if insurance will cover Igenex testing? A few parents have asked about this.

 

Dr. T

 

I think it depends on your insurance. I have not submitted ours and I should have. I had assumed that they do not cover it b/c Igenex does not handle insurance. I think you can submit it to your insurance company and they may pay for it. Someone told me that our insurance provider, United Healthcare, actually owns Igenex, which is very interesting. Many of the tests that Dr. Jones ordered were covered such as the Specialty Labs test for Bartonella. They can give you advice about which ones are usually covered.

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