If 1st dx'd PANDAS then LD...did PANDAS ever reall play a role?

[thereishope]

Let's hope you don't ever have to find out how he reacts to another confirmed infection! There's always a chance he won't contract it again. Here's hoping and praying...

 

 

The true test will be when he eventually off antibiotics and we do confirm strep....... but I suspect he still has another year of treatment at this point.

[sf_mom]

Thanks Vickie... I'll take the hoping and the praying!

[RNmom]

I'll admit, I have a very hard time reading these studies...God Bless Madeleine for being able to design and run them!!!

 

Is the bottom line in this which came first; chicken or egg debate that these scientists determined the predisposition for auto-immunity comes first, not that the auto-immunity is caused by these two manifestations of Lyme (joint & heart)?

 

I think this is a very complex question. Please allow me to share that I have a history of Rheumatic Fever (an autoimmune disorder related to strep). Over the years I have been able to manage my residual, occasional joint pain with Augmentin. I would joke that I knew I had been exposed to strep when certain joints became painful. Now, however, I have near constant joint pain that is not responding so well to a few weeks of Augmentin. I also have the Bartonella rash. I am waiting to see a LLMD and get tested. For me, the possibility that someone predisposed to autoimmunity to strep. could also be similarly predisposed with regard to Lyme is an important question.

 

Even more so because my ds14 who was a "poster child" for catastrophic PANDAS last January has now been diagnosed with Lyme and Bartonella. His treatment is rocky because the die-off stimulates the PANDAS symptoms. This is yet another reason to wonder about the relationship between Lyme and PANDAS along with how that might effect individuals predisposed to autoimmune responses.

Edited November 18, 2010 by RNmom

[sf_mom]

You know when it comes to predisposition.... you'll always get a battle from me. Thanks to ART (assisted reproductive technology) my twins children were conceived via donor egg and carried by me in utero. Our older son is only half biologically related to the twins. The odds of us having 3 children with PANDAS was very low due to genetic make-up.

 

If you are interested and have time, I recommend reading some of Paul Ewald's books. He also presented at the most recent ILADS conference. Its a whole new perspective on germ theory.

 

http://en.wikipedia.org/wiki/Paul_W._Ewald

Edited November 18, 2010 by SF Mom

[PacificMama]

I've been off the board lately and have not read all that's been written in this post. You are obviously going to get some different opinion on this issue. But I think it's very complicated, and much research is being done on various things that relate to some of these questions.

 

My thoughts:

As to Dr. Cunningham, I've been in touch with her periodically regarding lyme and her research. I would never attempt to speak for her on this board, but it's no secret that she is working with several prominent lyme doctors and running the same research on their patients who have the neuropsych symptoms. And of course many people here are reporting back to her that they have subsequently been diagnosed with lyme. So perhaps soon she will publish more on this topic. But really, there has been and continues to be research going on in as to these pathogens.

 

Neuropsych symptoms (such as those classified as PANDAS here) have always been listed as possible symptoms for lyme and related pathogens. The medical literature is full of discussion, and has been for years and years.

 

If you go to any of the lyme boards, there are all kinds of people who report these symptoms about themselves or their kids. Rarely do they mention PANDAS. They only know these symptoms as just something that happens with lyme. With treatment, the symptoms resolve.

 

I personally would not say a person is "predisposed" to lyme per se. But why is it that while there may be great numbers of people exposed to these pathogens, only some present with symptoms? Or maybe it's years down the line that the symptoms emerge into illness? Autoimmunity and other hereditary factors may play a role (lots of research now on the role of autoimmunity and lyme). But certainly it seems reasonable to say that there is some reason one person's immune system handles the pathogen, and another person's doesn't.

 

I know lots of people here say "PANDAS and Lyme". But I think if you've got a confirmed diagnosis of one of these pathogens (borrelia, bartonella, myco, babesia, RMSF, Erlichia, etc), then that is your true problem. And all these other layers pile on top of that. I think it is Dr. Harris' slide that shows lyme as the hub, and all the other spokes radiating away (viruses, other bacterial infections, allergies, mold, yeast, etc). And as has been pointed out, llmd's are now referring to things as Multiple Infection syndrome. So yes, it's complicated. But unless, and until, the underlying pathogenic infection is addressed there will not be permanent or lasting recovery.

 

I'll admit, I have a very hard time reading these studies...God Bless Madeleine for being able to design and run them!!!

 

Is the bottom line in this which came first; chicken or egg debate that these scientists determined the predisposition for auto-immunity comes first, not that the auto-immunity is caused by these two manifestations of Lyme (joint & heart)?

 

I think this is a very complex question. Please allow me to share that I have a history of Rheumatic Fever (an autoimmune disorder related to strep). Over the years I have been able to manage my residual, occasional joint pain with Augmentin. I would joke that I knew I had been exposed to strep when certain joints became painful. Now, however, I have near constant joint pain that is not responding so well to a few weeks of Augmentin. I also have the Bartonella rash. I am waiting to see a LLMD and get tested. For me, the possibility that someone predisposed to autoimmunity to strep. could also be similarly predisposed with regard to Lyme is an important question.

 

Even more so because my ds14 who was a "poster child" for catastrophic PANDAS last January has now been diagnosed with Lyme and Bartonella. His treatment is rocky because the die-off stimulates the PANDAS symptoms. This is yet another reason to wonder about the relationship between Lyme and PANDAS along with how that might effect individuals predisposed to autoimmune responses.

[RNmom]

I've been off the board lately and have not read all that's been written in this post. You are obviously going to get some different opinion on this issue. But I think it's very complicated, and much research is being done on various things that relate to some of these questions.

 

My thoughts:

As to Dr. Cunningham, I've been in touch with her periodically regarding lyme and her research. I would never attempt to speak for her on this board, but it's no secret that she is working with several prominent lyme doctors and running the same research on their patients who have the neuropsych symptoms. And of course many people here are reporting back to her that they have subsequently been diagnosed with lyme. So perhaps soon she will publish more on this topic. But really, there has been and continues to be research going on in as to these pathogens.

 

Neuropsych symptoms (such as those classified as PANDAS here) have always been listed as possible symptoms for lyme and related pathogens. The medical literature is full of discussion, and has been for years and years.

 

If you go to any of the lyme boards, there are all kinds of people who report these symptoms about themselves or their kids. Rarely do they mention PANDAS. They only know these symptoms as just something that happens with lyme. With treatment, the symptoms resolve.

 

I personally would not say a person is "predisposed" to lyme per se. But why is it that while there may be great numbers of people exposed to these pathogens, only some present with symptoms? Or maybe it's years down the line that the symptoms emerge into illness? Autoimmunity and other hereditary factors may play a role (lots of research now on the role of autoimmunity and lyme). But certainly it seems reasonable to say that there is some reason one person's immune system handles the pathogen, and another person's doesn't.

 

I know lots of people here say "PANDAS and Lyme". But I think if you've got a confirmed diagnosis of one of these pathogens (borrelia, bartonella, myco, babesia, RMSF, Erlichia, etc), then that is your true problem. And all these other layers pile on top of that. I think it is Dr. Harris' slide that shows lyme as the hub, and all the other spokes radiating away (viruses, other bacterial infections, allergies, mold, yeast, etc). And as has been pointed out, llmd's are now referring to things as Multiple Infection syndrome. So yes, it's complicated. But unless, and until, the underlying pathogenic infection is addressed there will not be permanent or lasting recovery.

 

I'll admit, I have a very hard time reading these studies...God Bless Madeleine for being able to design and run them!!!

 

Is the bottom line in this which came first; chicken or egg debate that these scientists determined the predisposition for auto-immunity comes first, not that the auto-immunity is caused by these two manifestations of Lyme (joint & heart)?

 

I think this is a very complex question. Please allow me to share that I have a history of Rheumatic Fever (an autoimmune disorder related to strep). Over the years I have been able to manage my residual, occasional joint pain with Augmentin. I would joke that I knew I had been exposed to strep when certain joints became painful. Now, however, I have near constant joint pain that is not responding so well to a few weeks of Augmentin. I also have the Bartonella rash. I am waiting to see a LLMD and get tested. For me, the possibility that someone predisposed to autoimmunity to strep. could also be similarly predisposed with regard to Lyme is an important question.

 

Even more so because my ds14 who was a "poster child" for catastrophic PANDAS last January has now been diagnosed with Lyme and Bartonella. His treatment is rocky because the die-off stimulates the PANDAS symptoms. This is yet another reason to wonder about the relationship between Lyme and PANDAS along with how that might effect individuals predisposed to autoimmune responses.

This makes sense. Let me clarify too that I wasn't thinking a person could be predisposed to Lyme. What I do wonder about is whether the Lyme disease sets up a "predisposition" to certain kinds of other autoimmune problems - including, possibly, PANDAS. I think that is what you are saying here too - and much more clearly!

 

I was also thinking that PANDAS can occur on its own - and a child with PANDAS could even contract Lyme separately after developing PANDAS (that may be the case with my ds14). However, I believe PANDAS is an autoimmune response to strep similar to that of Rheumatic Fever. While Lyme... it is interesting to watch the medical studies tease apart the role of autoimmunity in this disease process. The little bit I have been able to read seems to indicate that Lyme can set a person up to become autoimmune to things??

 

I would love to hear more about this.

 

I believe my ds14 and I are different in how our illnesses evolved. In my case, I clearly had Rheumatic Fever first @ 47 years ago at the age of 6. My guess is that I did not contract Lyme until we moved to our current property in Northern Virginia a year or so ago. I love gardening and we bought this property in 2005 with the idea that I would enjoy renovating the 21 neglected gardens it came with!! The gardens are now finished (and flourishing) but unfortunately it might all be at the cost of my health. I did check into the possibility of Lyme disease for me a year ago but I used the standard test - which we all know has a high rate of false negatives. In a month or so I will hopefully know for certain if I truly have Lyme. I do think I have the Bartonella rash. Also, our family dog (Fido) contracted Lyme @ two years ago (long story) - we just finally got this confirmed by the vet. Fido, it seems, has functioned as the canary in the mine shaft for our household (he loves our backyard with all those gardens).

 

My ds14 is a different story. I am not certain what came first. There is some thought that he has had PANDAS since he was a preschooler. His PANDAS doc thinks the high functioning Aspergers diagnosis he received @ the age of 7 was really misdiagnosed PANDAS. He became clearly symptomatic of PANDAS two years ago. It "blew up" last January 2010. The question that relates to the the work Dr. Cunninghan is doing is weather my ds14 actually contracted Lyme before he developed PANDAS. The only thing I know for certain is that I first noticed his Bartonella rash in the summer of 2009 (he was 13 and I thought it was stretch marks from his growth spurt). I have no other symptoms of Lyme in my memory for my ds14 before that. It does not eliminate the question for me however. Which came first: Lyme or PANDAS is a question that will bother me for a long while - probably until he is well. In the meantime we battle both...

 

Another (more chilling) thought is that my ds14 had mild to moderate PANDAS for years and upon contracting Lyme the PANDAS became catastrophic. That "fits" the way things have played out best - and makes me very sad that we did not get the PANDAS diagnosed and under control long before his life fell apart. I guess every PANDAS parent feels this way.

Edited November 18, 2010 by RNmom

[PacificMama]

RNMom,

 

Yes, I think we are saying many of the same things.

 

And yes, lyme definitively creates autoimmune problems -- many autoimmune diseases are prevalent in lyme folks. But much of this can be resolved with proper treatment -- the autoimmunity goes away.

 

So hard to say what comes first in situations where there is much as play. Do you feel that there is at all a possibility that the RF from your childhood was not somehow related to lyme, and that you have had it all this time? I'm sure you know that we have many moms on this board who are finding out that they themselves have had lyme, and passed it congenitally to their children. It can play out in so many different ways -- so there is no standard to compare oneself too.

 

In any event, at the end of the day, it only matters that you all get the proper treatment now! Regardless of all possible chicken and egg scenarios!

 

Mary