Dr_Rosario_Trifiletti

More thought on the p41 IgG/M observation

16 posts in this topic

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

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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?

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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

 

So interesting. Gat has long, historically, has long, healthy remissions of more than a year at a time during which he has absolutely no stomach issues at all. The only time he has stomach pain is when he's in a backslide and then the stomach pain is every bit as life limiting as the anxiety. Thank you so much for your continued work and offering hope to these worn out kids and their parents!

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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

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Dr. T,

 

Glad you are still sorting through the 41 band connection.

 

This may be helpful... are you aware of the Coumbia University Lyme and Tick Borne Research Center? Right in your neck of the woods.

http://www.columbia-lyme.org/index.html

 

It's an excellent resource. Here is a link to their current research studies, as well as past studies.

http://www.columbia-lyme.org/research/cr_research.html

 

Surely they have notions or findings on just the sort of things you are considering. The head of research is Dr. Brian Fallon -- I think it would be a worthwhile conversation. Here is his bio:

 

-----------------------

Brian A. Fallon, MD, MPH, Associate Professor of Clinical Psychiatry at the Columbia University College of Physicians and Surgeons, is the director of the Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center. A graduate of Harvard College, he obtained his M.D. degree from the Columbia University College of Physicians and Surgeons, as well as a master's degree in public health epidemiology from Columbia University. He did his research training and an NIH fellowship in biological psychiatry at Columbia Presbyterian Medical Center and the New York State Psychiatric Institute. Dr. Fallon’s research has focused on neuropsychiatry – the discipline that studies the behavioral and mood effects of diseases that affect the brain. His particular areas of research focus in Lyme disease include phenomenology, diagnostics, neuroimaging, biomarker, and treatment studies. His expertise in psychiatry includes neurocognitive testing, clinical trial development, obsessive compulsive disorder, and hypochondriasis. Dr. Fallon has published over 100 peer-reviewed articles, review papers, and book chapters and he has served as a reviewer for many journals, including JAMA, Journal of Infectious Disease, Clinical Infectious Disease, and the American Journal of Psychiatry.

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We have severe stomach issues, onset with PANDAS (or whatever it is that responds to abx and Pred :wacko: ) - after Endoscope, found Gastric Ulcers (8!!!) with no sign of H.Pylori. Responds well to combo of abx & Prevacid. Never tested for Lyme or Mycop, and now on abx for 6 months, assuming no point in running test now?

 

She is doing well overall & we try to limit testing when possible.

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Dr. T - I highly recommend talking to Brian Fallon if you're going down this route. He was my doctor for a while, and was sure that I must have Lyme - but my tests never came out totally positive. He did fully recognize what I had was an autoimmune disease, though. I asked him a thousand times if he thought I was "somatasizing" and he responded 1000 times that I did not "look like" a somatasizer but rather looked like an infection-triggered autoimmune case. But then I moved west and that's when Dr. Ketter took over with confirming the whole thing.

 

PANDAS was not coined at the time but I am sure that Dr. Fallon would be onto it by now.

 

 

Dr. T,

 

Glad you are still sorting through the 41 band connection.

 

This may be helpful... are you aware of the Coumbia University Lyme and Tick Borne Research Center? Right in your neck of the woods.

http://www.columbia-lyme.org/index.html

 

It's an excellent resource. Here is a link to their current research studies, as well as past studies.

http://www.columbia-lyme.org/research/cr_research.html

 

Surely they have notions or findings on just the sort of things you are considering. The head of research is Dr. Brian Fallon -- I think it would be a worthwhile conversation. Here is his bio:

 

-----------------------

Brian A. Fallon, MD, MPH, Associate Professor of Clinical Psychiatry at the Columbia University College of Physicians and Surgeons, is the director of the Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center. A graduate of Harvard College, he obtained his M.D. degree from the Columbia University College of Physicians and Surgeons, as well as a master's degree in public health epidemiology from Columbia University. He did his research training and an NIH fellowship in biological psychiatry at Columbia Presbyterian Medical Center and the New York State Psychiatric Institute. Dr. Fallon’s research has focused on neuropsychiatry – the discipline that studies the behavioral and mood effects of diseases that affect the brain. His particular areas of research focus in Lyme disease include phenomenology, diagnostics, neuroimaging, biomarker, and treatment studies. His expertise in psychiatry includes neurocognitive testing, clinical trial development, obsessive compulsive disorder, and hypochondriasis. Dr. Fallon has published over 100 peer-reviewed articles, review papers, and book chapters and he has served as a reviewer for many journals, including JAMA, Journal of Infectious Disease, Clinical Infectious Disease, and the American Journal of Psychiatry.

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I don't know much about GI infections. Could this be related to severe constipation? Ds6 has it bad, and worse when PANDAS seems worse. When he finally does poop, it's like a baseball bat - literally 2 inches in diameter and well over a foot long (sorry TMI!). They stop up the potty every time. He was actually hospitalized once or twice with high fevers etc. related to some sort of toxic colon or something. Can't recall the details. It was never followed with testing or any kind of antimicrobial treatment.

 

 

 

 

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

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Dr. T - I highly recommend talking to Brian Fallon if you're going down this route. He was my doctor for a while, and was sure that I must have Lyme - but my tests never came out totally positive. He did fully recognize what I had was an autoimmune disease, though. I asked him a thousand times if he thought I was "somatasizing" and he responded 1000 times that I did not "look like" a somatasizer but rather looked like an infection-triggered autoimmune case. But then I moved west and that's when Dr. Ketter took over with confirming the whole thing.

 

PANDAS was not coined at the time but I am sure that Dr. Fallon would be onto it by now.

 

 

Dr. T,

 

Glad you are still sorting through the 41 band connection.

 

This may be helpful... are you aware of the Coumbia University Lyme and Tick Borne Research Center? Right in your neck of the woods.

http://www.columbia-lyme.org/index.html

 

It's an excellent resource. Here is a link to their current research studies, as well as past studies.

http://www.columbia-lyme.org/research/cr_research.html

 

Surely they have notions or findings on just the sort of things you are considering. The head of research is Dr. Brian Fallon -- I think it would be a worthwhile conversation. Here is his bio:

 

-----------------------

Brian A. Fallon, MD, MPH, Associate Professor of Clinical Psychiatry at the Columbia University College of Physicians and Surgeons, is the director of the Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center. A graduate of Harvard College, he obtained his M.D. degree from the Columbia University College of Physicians and Surgeons, as well as a master's degree in public health epidemiology from Columbia University. He did his research training and an NIH fellowship in biological psychiatry at Columbia Presbyterian Medical Center and the New York State Psychiatric Institute. Dr. Fallon’s research has focused on neuropsychiatry – the discipline that studies the behavioral and mood effects of diseases that affect the brain. His particular areas of research focus in Lyme disease include phenomenology, diagnostics, neuroimaging, biomarker, and treatment studies. His expertise in psychiatry includes neurocognitive testing, clinical trial development, obsessive compulsive disorder, and hypochondriasis. Dr. Fallon has published over 100 peer-reviewed articles, review papers, and book chapters and he has served as a reviewer for many journals, including JAMA, Journal of Infectious Disease, Clinical Infectious Disease, and the American Journal of Psychiatry.

 

 

Dr. Fallon and I have shared quite a few patients over the years. He is a terrific doctor and person and I have no reservation in sending any patient here to him in whom a Lyme-like illness is suspected. I will contact him.

 

Dr. T

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My daughter was positive for the p41 band. At one point last year we did some GI testing done and was positive for H pylori. While H pylori is not a spirochete I think it does have the flagellated proteins associated. I think this is a common infection and could be one of many reasons for a reactive p41 band.

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Well this makes me feel a little less crazy about how I was jumping up and down at my ped 2 years ago when my son had months of persistent stomach pain that corresponded to his downward spiral that lead to panic attacks, school phobia, homebound services, major depression, psychotic rages and eventual hospitalization. When she ran every test she could think of and they came up negative, she told me he had constipation and his continuing stomach pain was psychosomatic...

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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

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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

 

 

Brilliant! And how many of these kids suffer from "belly aches" right before an exacerbation? Most, if not almost all..

Thank God for doctors like you!

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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

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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

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  • Help us learn if blood type has a correlation with PANDAS/PANS   30 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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      • AB -
      • I Don't Know

    Please sign in or register to vote in this poll. View topic