Not to start up the whole Lyme debate again, but....

[GraceUnderPressure]

In the book "Cure Unknown", it discusses how there are a number of different types of borrelia. One researcher came up with 20 (if I'm remembering right, but that's close, I believe) and found that 4 seemed to be particularly virulent to humans. Northern borrelia seems to cause more severe problems than the southern varieties. The microbe has an impressive ability to mutate.

 

Using the term "endemic areas" seems so misleading anymore since there is no mandatory reporting & everyone agrees that Lyme is significantly under-reported. If reporting were mandatory, I'm pretty certain that Missouri would be a hotspot, too. It is bizarre for anyone to think that CT Lyme is not travelling - esp since researchers believe that it was imported here from Europe.

 

We live in a part of TX that is a major migratory pathway for birds. People actually come from across the country to birdwatch here. The birds carry ticks. They also get bit by ticks up north, then come down to the south with the diseases that were transmitted, and then get bit by ticks here and so on. I'd be shocked if there were not some variety that was endemic here as well.

 

"Cure Unknown" talks about how the specificity of the tests is a major reason for the false negatives - because borrelia is not only capable of changing its outer proteins, but comes in so many different "varieties". So while it is certainly possible that it is some other gram negative bacteria causing the response, the above information inclines me to believe that it is most likely due to a different form of borrelia lighting up only one or two or possibly even no bands.

[MichaelTampa]

I am sure Dr. T. is well meaning, I remember his time on the board, but just for those newbies to the considering lyme, he is looking at lyme in a way that most experts in treating lyme would not look at it. He is basically concluding that the western blots are effective tests because he hasn't seen it give a negative on someone with an EM, but what about all the people who have lyme and no EM rash? It seems he thinks these people don't exist, or perhaps they have all been misdiagnosed. Plenty get the rash after they start treatment, some never get it, but still get better from lyme treatment.

 

He really could be right, all these other cases as not lyme at all, perhaps many have been misdiagnosed with lyme and then gotten better from lyme treatment. In the end there is absolutely no way of proving that anyone, even someone who has lyme symptoms improve with lyme treatment, even someone where borrelia has been extracted from their body, is/was actually suffering from lyme disease. All of symptoms could be from something completely different, it could be a coincidence, really, so true. And maybe someday he will find what that other something is, and if so this would probably be useful for some people somehow, perhaps leading to better treatments. But for someone focused on getting better, it might just be more important what treatments work for people with various symptoms and blood test results, rather than what proof there is that any particular bug is the true cause.

 

Regarding his comment about lyme rarely if ever being the only trigger in a PANDAS case, I could easily see this being correct. Lyme does a great job of weakening the immune system that the patient will likely have some mycoplasma and strep and viruses available to trigger PANDAS, while lyme also causes increased autoimmunity by rearranging DNA.

 

In the end, for a disease so misunderstood like lyme, it is dangerous to rely on someone for diagnostic approaches if they are not experienced at treating patients and seeing the results of following through on treatments with various pateints presenting in different ways.

[eljomom]

I can see the excitement of realizing that 80-90% of PANDAS kids are p41+. However, from what I have read (and I am NOT an expert, so I say this with nothing but devil's advocacy...), it might be that 80-90% of the general population are p41+.

[EAMom]

I can see the excitement of realizing that 80-90% of PANDAS kids are p41+. However, from what I have read (and I am NOT an expert, so I say this with nothing but devil's advocacy...), it might be that 80-90% of the general population are p41+.

 

MichaelTampa said that he read an article that says that 40% of the general population is p41+. Here's the thread: http://www.latitudes.org/forums/index.php?showtopic=13364&st=0

 

Does anyone have a link with these stats?

[MichaelTampa]

I can see the excitement of realizing that 80-90% of PANDAS kids are p41+. However, from what I have read (and I am NOT an expert, so I say this with nothing but devil's advocacy...), it might be that 80-90% of the general population are p41+.

 

MichaelTampa said that he read an article that says that 40% of the general population is p41+. Here's the thread: http://www.latitudes.org/forums/index.php?showtopic=13364&st=0

 

Does anyone have a link with these stats?

 

 

Further down on that same thread, aiden's mom posted a link to the actual study I was citing from memory, so please refer to that study for the actual numbers.

[matis_mom]

Oh My, WD--Very interesting find in the link to Dr T's observation re: p41. WOW! That is what our d had positive too-- and we are not one of the families that were "counted" in his observations, as we have never seen him--I can't help but wonder if many of our kids have p41 positive, as he seems to indicate, and so what IS that?

 

"Note from Neurologist, Dr. Rosario Trifiletti regarding traditional Western Blot test for Lyme versus experimental IGENEX test for Lyme. (2010)

Probably <1% of children with PANDAS/PITANDS have a positive Lyme Western blot by CDC criteria.

I say this with confidence because I have tested a lot of kids from the NY-NJ-PA-CT area where Lyme is endemic I routinely check all new patients - I have over 200 PANDAS patients now in which this was checked, and found a TRUE positive Western blot in only one. There were a small number of patients who show two positive IgM bands (which would be strictly CDC positive) but I elected to do a follow-up test in a month, which was uniformly (100%) negative in follow-up.

In contrast, 80-90% of patients (haven't recalculated data for a while) are positive for p41 (flagellin) on IgG and/or IgM. I think this may be telling us that a presently unidentified flagellated bacterium (or several bacteria) which is NOT B.Burgerdorfi is a strong PANDAS trigger. My goal is to find out what that trigger is ....

I'll be presenting the above in October at the 2010 Child Neurology Society meeting in Providence, RI."

 

Wow again! and thank you Dr T.!

 

I just know he's going to be the one who figures this all out. The 2+ hours we spent with him was amazing. Wouldn't that turn the whole PANDAS Lyme world on it's ear if he finds it's a totally different bacteria that's doing this?

Very interesting! It's always those who think outside the box who make the great discoveries! So refreshing to see someone is still looking with wide-open eyes at this problem