Question

[P_Mom]

I have a question for those who believe that their children's "PANDAS" was caused by Lyme....that it is the result of a chronic infection and not immune dysfunction....which in turn lead to the misdiagnosis of an autoimmune disorder and not chronic infection. The PANDAS/Lyme thing has a lot of people confused.....is Lyme at the root of PANDAS? Does my kid really have Lyme (not PANDAS) and Lyme caused their immune dysfunction?

 

I was thinking about this the other day.....perhaps someone can shed some light on it, or, perhaps this can shed some light for some people. I KNOW there are real cases of Lyme here..I am not refuting Lyme...just for those with clear cut PANDAS cases...think about this.....

Take into account Cunningham's mouse study:

 

"Using a mouse model of PANDAS, Mady Hornig, MD associate professor of epidemiology at Columbia University Mailman School of Public Health, and colleagues(Cunningham) demonstrate this suspected link between GABHS antibodies and the psychiatric symptoms of the disorder. Immunizing mice with an inactivated form of the bacteria, CII researchers found that the mice exhibited repetitive behaviors reminiscent of children with PANDAS. Injection of antibodies from the immunized mice into the bloodstream of non-immunized mice replicated these behaviors.

 

“These findings illustrate that antibodies alone are sufficient to trigger this behavioral syndrome,” said Dr. Hornig.

Edited November 24, 2010 by P.Mom

[dcmom]

Thanks PMom! Very reasonable.

 

I think there are several cases:

 

PANDAS- which by definition is an autoimmune disorder triggered by infection

 

PANDAS with chronic infection- pandas (see above), complicated and more difficult to treat because of an ongoing active infection (mycoplasma, lyme, maybe intracellular strep, etc) This category may include some of our kids who were originally diagnosed pandas, and subsequently lyme.

 

Lyme- Neuropsychiatric lyme, which is a chronic infection that may cause many of the same symptoms of pandas (possibly even temporary autoimmunity?) Maybe some kids her were maybe diagnosed with pandas, when they should have been diagnosed with neuropsychiatric lyme.

 

Finally, I think pandas is an autoimmune disorder, which (for most) once triggered, may not be able to be cured. If the immune system's b cells have created a memory- there is not a known way to erase this.

 

I am thinking most lyme parents are led to believe that when you rid of the infection the child is cured? The autoimmunity is resolved- no b cell memory?

 

Although- I have read about lyme relapses- does that mean the bacteria is dormant but not gone.

 

I know many don't like to get stuck on diagnosis or labels- and I agree (a little bit)- it is just important to do what works. That being said, as a parent it helps me to have more of an idea of what is really going on, and what to expect, so I can deal with the present and the future. Pandas, Lyme and pandas with lyme, would create different implications and questions in my mind.\

 

Would like to hear everyone's thoughts

[norcalmom]

I agree with dcmom. I believe that once Cam Kinase and Anti-neuronal antibodies are produced at many times normal rates, it is proof that this is an auto-immune disease.

 

When they say “These findings illustrate that antibodies alone are sufficient to trigger this behavioral syndrome,” Dr. Horning - to me this means NO infection took place. The fact that the antibodies (without any infection) can cause the symptoms, is proof that it is an auto-immune disorder. I also think I recall that all the mice they used were bread to have genetic susceptibilty to react? Not juts any mice were immunized...I'd have to check the study on that, I haven't read it in a long time.

 

Weather Lyme can cause neuro-phychological without the raise in the Cam K and aintineuronals, I don't know. Seems possible. Are there alot of Lyme patients with with Neuro-phyc symptoms, and normal Cam k (and anti -neuros?).

 

My interpretation of Dr C's studies and the mouse study, and information passed from Dr C's office, is that CERTAIN infections - including strep, Lyme, and mycoplasma pnemoniae, can ALL trigger this auto immune reaction. There may be (and probably are) other infections that can trigger it.

 

I have an autoimmune disorder, and was told "in 50% of the cases we know it is triggered by Lupus, Hepatitis C, or exposure to mercury (amalgam fillings!)" in the other 50% we don't know what sets it off. But the fact is, it doens't much matter what the trigger is..It has been pulled. It could have told me I have lupus or Hep C - which they tested me for, but I didn't. Whatever set it off is gone (probably amalgam issues I had 6 months prior), as far as I know but the condition persists...even years after it went away.. in times of extreme stress (like when pandas entered our life!) - it rears its ugly head. While its important to make sure the trigger is eliminated, it seems that the trigger has pushed something in my immune system that can never fully be undone.

 

I wonder if the underlying reason certain individuals are susceptible is genetic, or perhaps they have another chronic infection that had gone undiagnosed. I think right now we think.. genetic disposition + exposure + (BBB breach?) = disorder. What if it is not genetic but is another type of infection/or immunce disorder, like say Lyme (or Lupus, or MS)..or a different combination of things that need to be there.

 

The other thing I often wonder is if other parts of the immune system (IgG, IgA, pnemoniae antibodies, subclasses) get more and more messed up the longer the kids have pandas , or if some of them had messed up immune systems in the first place, making them more susceptible. What came first, the chicken or the egg? since from what I know there is a feedback loop - and the immune system has a memory, it learns from itself..Are PITAND kids more messed up than pandas? Are pandas kids going to turn into PITANDs if they don't get intervention? Does ivig work for pitands as well as it does for pandas...While we are getting more and more answers, I feel it is so slow I will die never knowing.

 

Oh an ANOTHER thing...there are so many people talking about the gluten / celiac connection - I wonder if celiacs disease + strep = pandas (or high Cam K). Or celiacs + lyme...or...you get the picture. Sorry, my ruminations are not very productive!

[sf_mom]

I am in a little bit of hurry this morning but wanted to add to the discussion.

 

When we were initially pursuing PANDAS treatment I had several conversations.... elevated to heated discussion with a Dr. K - Strep Specialist out of MN not Dr. K PANDAS specialist. We even exchanged numerous e-mails and he reviewed our children's history, labs and was aware of the cluster of children. His opinion at the time was..... that my children and friend's son were indeed sick but still felt there was no way strep could create the PANDAS like on-set. He has been neutral or negative in his comments about PANDAS the entire time. I remember being so angry because my children were responding to treatment. I of course, at the time.... felt he was wrong and continued on our path of treatment. It is only now that I can appreciate his cautious tone with me and his depth of knowledge.

 

Unfortunately, enough is not yet known about PANDAS and everyone needs to remember it is not well studied. We are fortunate that there have been a few Dr.'s willing to stick their careers on the line to help our children and treat for PANDAS. I also feel our pooled experience is way ahead of the research and we are asking the Dr.'s to play CATCH - UP. There heads are spinning as well.

 

Sorry could not finish my thought.

[thereishope]

SFMom, this doctor you saw, what is his general opinion about PANDAS (not specific to your case)?

[dcmom]

I have also had several in depth conversations with this doc, he is a strep expert. He is a lovely man- but not a pandas believer. What he , and a close friend of his and doctor have relayed to me is they are not satisfied that the research has proven the hypothesis of pandas, not emphatically that it doesn't exist at all. Unfortunately we as parents cannot wait for science and mainstream docs to catch up and treat our kids, Lyme or pandas, equally as controversial.

[thereishope]

I was just curious whether this doctor is making blanket statements or if it was in reference to a specific case. When the topic of Lyme comes up, I just want to make sure it is said that there are kids that have PANDAS w/o Lyme or even without coinfections. As said before, this is the case with my son and I don't want him and his suffering to be dismissed or forgotten. I don't tell anyone they don't have Lyme. I don't want anyone to tell me my son does not have PANDAS.

[P_Mom]

I was just curious whether this doctor is making blanket statements or if it was in reference to a specific case. When the topic of Lyme comes up, I just want to make sure it is said that there are kids that have PANDAS w/o Lyme or even without coinfections. As said before, this is the case with my son and I don't want him and his suffering to be dismissed or forgotten. I don't tell anyone they don't have Lyme. I don't want anyone to tell me my son does not have PANDAS.

 

 

Well said, Vickie! We don't need anymore blanket, dismissive statements about PANDAS that can hinder the research/acceptance progress even more. We know what we know...lived what we lived... we saw what we saw.

My boys are also two kids who have PANDAS and No lyme (yes..for the record..we did even more extensive testing and evaluating), nor do they have any kind of co-infection.

 

 

Sf mom...."Unfortunately, enough is not yet known about PANDAS and everyone needs to remember it is not well studied." EXACTLY!

 

Cunningham is also a strep expert...has researched it for years. Grows it in her lab...injects it into mice...etc. She believes 100% in the auto-immune dysfunction of PANDAS cause by strep. So, maybe your doctor is wrong?? Maybe Cunningham is wrong? Again...can we stay away from absolutes?

Edited November 24, 2010 by P.Mom

[sf_mom]

Vickie,

 

The Dr. K I am referencing... We did not see in person but only had several discussions via phone and e-mail. I would say he has been mostly neutral or negative on the notion of 'PANDAS' and only willing to call it PAND. He was invited to the conference back in June along with all the typical nay sayers but did not attend. He is the Head of the World Health Organization Collaborating Center for Reference and Research on Streptococci. That particular information might provide a clue as to who I am referencing.

 

-Wendy

[thereishope]

Now I connect the dots. Can you see the lightbulb light over my head?

 

Vickie,

 

The Dr. K I am referencing... We did not see in person but only had several discussions via phone and e-mail. I would say he has been mostly neutral or negative on the notion of 'PANDAS' and only willing to call it PAND. He was invited to the conference back in June along with all the typical nay sayers but did not attend. He is the Head of the World Health Organization Collaborating Center for Reference and Research on Streptococci. That particular information might provide a clue as to who I am referencing.

 

-Wendy

[sf_mom]

DCMom,

 

We did tested all our children's T and B cells over at Stanford and all came back with normal range and they were telling me no auto-immune disfunction was occurring. BUT, yet we had elevated CaM Kinase and clinical symptoms. BUT, was that because my kids have congenital Lyme, do not have proper antibodies and 'it' is not recognized as foreign to their bodies (even though one child does make antibodies).... Who knows why every thing 'LOOKED' normal other than IgGs, Strep Pneumo Titers, Low WBC, Low RBC. They implied it could have been anything even a virus to cause the immune issues.

 

Yes, in the Lyme world some Dr's believe no auto-immunity in absence of chronic infection.... The question is can you 'get' all infection or can you get the immune system to operate properly enough to handle remaining bacteria without relapse. These are the issues that keep me up at night and we are focusing on getting the immune system to operate properly. Our Dr. tells me we'll see the IgGs turn around and 'perhaps' my children will even begin to make antibodies for Lyme. We've got half the immune system and essentially no strep pneumo titers, all were deteriorating over time..... so, I'll believe it when I see it.

 

We've got a long ways to go before I anticipate for those issues to turn around. For now, as long as they are making steady improvement I am willing to hang in there but do not rule out any treatment at this point.

 

-Wendy

Edited November 24, 2010 by SF Mom

[AmbersMommy]

I think my daughter had Lyme before she had PANDAS. She was diagnosed with Lyme on August 20th of this year. The blood was drawn in July. The results of one of the tests indicated that she has had Lyme for over a year. We are seeing Dr. Moorecroft, a LLMD who is a member of the International Lyme And Associated Diseases Society...I think that is what they call it. Our first PANDAS exacerbation happened around Mother's Day 2010. She started hallucinating, auditory and visual, OCD behaviors, etc. She also had been diagnosed one week prior with Strep!!!! I really think that if she did not have Lyme, she would not have gotten PANDAS. I do, however believe in BOTH diagnoses!!! I think they are related in some way. What if Lyme completely wears down the immune system and then Strep, or a similar bacteria causes some type of horrid auto-immune response? I'm not saying that every child with PANDAS necessarily has Lyme. I can imagine there are many diseases that could infect our children and wear down their immune system to the point that a bacteria would push it over the edge. Just my thoughts. Very curious about what everyone else thinks.