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MYCOPLASMA! could this be the key to some cases?


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This is interesting. My son had pneumonia when he had his sudden onset of PANDAS this summer. It was his 6th bout with pneumonia. He also had pneumonia when he had what we think may have been his first (undiagnosed) PANDAS flare 4 years ago. I'll have to go back through his records, but I don't remember any tests for Mycoplasma and I've read all the labs at this point. In fact, I wasn't even aware of Mycoplasma until now.

 

Thank you for posting this Dr. Trifiletti! Can someone tell me - is elevated IgM the definitive test for this? His IgM was low end of normal 6 1/2 weeks after the pneumonia was diagnosed.

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IgG is the definitive test.

IgM indicates a current infection. As tests are run mostly after the actual infection, if that one is ever noticed and diagnosed correctly, and results usually take about 2 weeks to come back, IgM have little meaning in the case of PITANDS or even IANDS (I find PANDAS the worng name as it relates only to a certain age group and underlying cause, while it is obvious the age group is of no importance and the Strep has never been the only cause) because the assumption is that the entibodies and not the actual bacteria are the element that attacks the Basal Ganglia in the brain causing the neuropsychiatric symptoms. It has long been noted that unknowledgable doctors test for Strep throat as if that were a prerequirement and dismissing cases on the basis of the smear being negative. AS for MycopP IgG, that too takes some time to rise, but then, in a normal case of walking or community pneumonia it should also subside, like mine did, and very much unlike Sandra's levels which are high, and strongly fluctuating within the high spectrum even 5 years after the preliminary infection. This means that the bacteria we initially believed was handled by the standard protocol antibiotics did remain formant suring the good year after the entibiotics short treatment had an effect and was retrigered by the (upper resp. tract) infection a year later. Makes sense tht only IVIG took care of it and that the treatment ebing stopped for no good reason allowed the situation to deteriorate after 4 good months.

I have to mention that 5 years ago and during all these years until now we were made to believe that Anti-DNase-B was not available in Finland and only 2 weeks ago she was finally tested for AST (negative) and this week for Anti-DNase-B (no results yet).

We now started a new trial at long term Zithromax, with the hope that the 2 past eyars of no treatment will not be a hindering factor in saving her young life.

 

Bat-Sheva

 

 

 

 

 

This is interesting. My son had pneumonia when he had his sudden onset of PANDAS this summer. It was his 6th bout with pneumonia. He also had pneumonia when he had what we think may have been his first (undiagnosed) PANDAS flare 4 years ago. I'll have to go back through his records, but I don't remember any tests for Mycoplasma and I've read all the labs at this point. In fact, I wasn't even aware of Mycoplasma until now.

 

Thank you for posting this Dr. Trifiletti! Can someone tell me - is elevated IgM the definitive test for this? His IgM was low end of normal 6 1/2 weeks after the pneumonia was diagnosed.

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Dear Parents,

 

I have just encountered two cases of acute sneezing tics in which there was acute (markedly elevated IgM) Mycoplasma infection plus possible strep co-infection. Mycoplasma responds to zithromax specifically and not other antibiotics ...as well as IVIG. So I'm certainly considering this in the differential diagnosis of PANDAS-like illnesses.

 

I wonder if there is some sort of interaction between Mycoplasma and Strep at the immunological level ....

 

Have any of your children been tested for this ....

 

Sorry for the short post --- very very busy today

 

Dr. T

 

Hi - I am new to the board I have been reading through this discussion board for a few weeks and came across this post from Dr. Trifiletti yesterday. My daughter is 19 and fits the critera of Dr. K's older children symptoms to a "T" We had the blood work done and strep did not show up but the Mycoplasma was high. Her symptoms really kicked in after being exposed in Junior year of high school to strep, her boyfriend had it and she was exposed to him before he realized it was strep and treated. She never presented with strep at the time but does remember feeling not great it was during mid terms so she pushed herself to get to school, that was January, by February she was a different kid. We struggled to get her to school and finally by end of March she wasn't going at all. There is a lot more to her story keeping it short here. We have just begun with Dr. K she is on augmentin now, we realize that is not the antibiotic for the mycoplasma, and have discussed this with Dr. K and once this round of augmentin is done we will discuss this further, for right now he wants her on this...she has felt better, still not great but seeing some improvements. This board has been so helpful for me. Thanks to all of you for your post.

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My son had pneumonia and sudden onset of PANDAS. We did not have a blood test as the diagnosis was via X-Ray. My brother was exposed to my son with pneumonia (prior to diagnosis), and came down with a horrible case of pneumonia thereafter. He was sick for a long time. I also think that my son has co-infection with strep, whose source still baffles me? My thinking is that it could have started in the throat and migrated to the gut.

 

IVIG, PEX, and antibiotics have helped a great deal, but we are still not out of the woods! Quite frustrating! Could it be that this combination of sources requires a different protocol than the "traditional" strep only source?

 

We are planning to switch from Augmentin to Zithromax.

Brooke

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I think that the reseatrch definition that lead to the "diagnosis" symptom list drawn by Swedo needs to be challenged.

The P has no valid basis. Sandra was 15 when she suddenly developed it.

The S may not be the only cause. There is in fact no proof that only Strep is the cause.

Loking at Sandra for the past 5 years and reading all I can find on Mycop. I am convinced that she could be MycopP and not Strep at all (we still ahve to see what the recent anti-DNase test will tell us). I am certain Mycop started it. Was tehre Strep in the past? No idea. It certainly was not present when this saga started.

Who knows how many people are out there who have been misdiagnosed and wrongly classified as TS or OCd or other mental health related conditions and still suffer. Could they still be helped? Can Sandra still be helped? I intend to find out, no matter what.

 

Bat-Sheva

 

 

 

 

 

My son had pneumonia and sudden onset of PANDAS. We did not have a blood test as the diagnosis was via X-Ray. My brother was exposed to my son with pneumonia (prior to diagnosis), and came down with a horrible case of pneumonia thereafter. He was sick for a long time. I also think that my son has co-infection with strep, whose source still baffles me? My thinking is that it could have started in the throat and migrated to the gut.

 

IVIG, PEX, and antibiotics have helped a great deal, but we are still not out of the woods! Quite frustrating! Could it be that this combination of sources requires a different protocol than the "traditional" strep only source?

 

We are planning to switch from Augmentin to Zithromax.

Brooke

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I do not know about other cases but Sandra clearly had pneomonia concurrent with Influenza A or right thereafter (post infection) and kept being weak and caughing hard dry caughs until we got the MycopP antibodies results and put her on Microlised antibiotics. We did not guess at the time that it will come back and did not know to guess that later on long term abx would be suggested as an effective treatment..... I wish we were.

 

During the past 5 years, esp the last 4 as the first was symptom free for a whole year after the Zeclar and Prednison short course I have heard her caughing in that Mycop way at times but did not know to think it may have some information regarding the condition. Now that I am thinking about it, I certainly think it might and that her dog may carry it too. Should manage to find the time to have her tested (we have 3 abd she is the only one caughing dry at times, which we thought was hairballs) and getting to a vet that can run such tests is a huge thing in this small country town and I am so Sandra bound that time too is an issue, but it should be done soon.

 

I wonder, how many parents can like us point the exact illness that triggered the entire condition, not the abrupt start of the symptoms.

 

I also wonder what it is that has made so many of us believers is the single possible cause of the condition. Maybe Strep is not the trigger of the condition but only one that exacerbates?

 

 

 

 

Are there any symptoms for it or would it be asymptomatic for PANDAS kids? Asking because my son is asymptomatic for strep.
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Have you ever considered or have the possibility to test for antibodies for pneomonia causing bacteria?

Did your son tested positive to Strep?

 

Adn again, what did you mean by "My thinking is that it could have started in the throat and migrated to the gut." I wonder if you mean intestinal pain and other digestive problems because Sandra certainly has them as well as joint pains (negative Rheumatic tests) and we were wondering could it be that the MycopP is somehow the cause for those.

 

 

 

 

 

 

 

My son had pneumonia and sudden onset of PANDAS. We did not have a blood test as the diagnosis was via X-Ray. My brother was exposed to my son with pneumonia (prior to diagnosis), and came down with a horrible case of pneumonia thereafter. He was sick for a long time. I also think that my son has co-infection with strep, whose source still baffles me? My thinking is that it could have started in the throat and migrated to the gut.

 

IVIG, PEX, and antibiotics have helped a great deal, but we are still not out of the woods! Quite frustrating! Could it be that this combination of sources requires a different protocol than the "traditional" strep only source?

 

We are planning to switch from Augmentin to Zithromax.

Brooke

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I think the majority on here know that other things can cause this disorder to surface.

 

Strep was definitely the trigger for my son's original exacerbation. The only other thing I can think of that would have been a red flag that something was wrong with his immune system was his recation to the chicken pox vaccine at one year old.

 

It also may not be an illness that causes this disorder, but other factors. It is the illness that is the finally part to the equation. Meaning, could kids have PANDAS as part of them but not ever have it activated? Does that makes sense?

 

I really think each child is different. What started the PANDAS process in one may vary from another. Take cancer as an example. Some are gentically prone to it some get it due to the enviormental factors. It may not be a clear cut cause and effect.

 

I wonder, how many parents can like us point the exact illness that triggered the entire condition, not the abrupt start of the symptoms.

 

I also wonder what it is that has made so many of us believers is the single possible cause of the condition. Maybe Strep is not the trigger of the condition but only one that exacerbates?

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It also may not be an illness that causes this disorder, but other factors. It is the illness that is the finally part to the equation. Meaning, could kids have PANDAS as part of them but not ever have it activated? Does that makes sense

 

Vickie,

this makes sense to me. I look at it like PANDAS is not really an illness in itself but an autoimmune proble where other assaults sort of 'turn it on'. Many kids and adults get strep and virals and pneumonias, etc. but don't necessarily start the process of what PANDAS is, so there has to be some things that come together to create that perfect storm and kind of set the ball rolling. If the symptoms start, (ocd/tics, etc.), then I guess they will remain or get worse as long as that assault is still present or comes back or comes back in some other way. Apparently, once the antibody response is disturbed and begins to attack erroneously (what autoimmune is), it may remain a problem forever, altho there may be ways to manage or reverse it. something like that,...don't really know.....does THAT make sense, :D

 

(oh and sorry about the polish joke, that one breaks me up every time, lol.)...

 

Faith

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Yes, it makes sense. And I told you not to worry about the joke:)

 

That's what I think is important for people to remember. It's an autoimmune issue.

 

You don't catch PANDAS.

 

Although I'm still stuck on the clusters of kids with PANDAS. For them, is it soley the strain that causes the whole autommune disorder to start?

 

I still think it's not cut and dry.

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I think that PANDAS is an absolutely wrong name for the condition, because it delimits the group of "valid and accepted" patients.

That is, they must be pediatric and have Strep, and if they do not, they are not valid for the club.

 

My hunch is that this is a condition, like cancer, in which certain immune related processes take place and affect the brain and cause certain (long possible list) of symptoms and react to certain therapies which nowadays seem to be mainly antibiotics (per bacteria) and immunomodular therapies.

 

Dr T. suggested at some point the name should be changed. What do you think?

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Dear Parents,

 

I have just encountered two cases of acute sneezing tics in which there was acute (markedly elevated IgM) Mycoplasma infection plus possible strep co-infection. Mycoplasma responds to zithromax specifically and not other antibiotics ...as well as IVIG. So I'm certainly considering this in the differential diagnosis of PANDAS-like illnesses.

 

I wonder if there is some sort of interaction between Mycoplasma and Strep at the immunological level ....

 

Have any of your children been tested for this ....

 

Sorry for the short post --- very very busy today

 

Dr. T

 

 

Dr. K mentioned that he has seen possible correlation of mycoplasma and PANDAS. He said that he has particularly noted this in kids who have serious raging/aggressiveness/Katie-bar-the-door behavior. This fit my son. So does the mycoplasma correlation. His IgM was negative, but the IgG was very positive. Where <.9 is negative and >1.9 is positive, Evan's was 3.9. I don't know how high that really is. He also had 780/>1360 for strep titers at the time. We believe that his onset had to have happened prior to two. His medical history is littered with infections (beginning at 10 mo---about a week after I quit nursing him) that are described in such a way that they could have been m. pneumonia and or s.pyogenes. Dawn

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I think that PANDAS is an absolutely wrong name for the condition, because it delimits the group of "valid and accepted" patients.

That is, they must be pediatric and have Strep, and if they do not, they are not valid for the club.

 

My hunch is that this is a condition, like cancer, in which certain immune related processes take place and affect the brain and cause certain (long possible list) of symptoms and react to certain therapies which nowadays seem to be mainly antibiotics (per bacteria) and immunomodular therapies.

 

Dr T. suggested at some point the name should be changed. What do you think?

I think there should be an overall grouping of PIAND (Post Infectious Autoimmune Neuropsychiatric Disorder) with sub-categories that delineate the triggering infections.

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That's actually what Swedo did:

 

In 1994, Swedo selected a pediatric subset of the "infection triggered auto-immune neuropsychiatric disorder" (PITAND).

 

Then in 1998, she started looking at the subset of PITAND where the infection was strep (I suppose it could have been called PSTAND but PANDAS stuck).

 

For the last 12 years she's been fighting just to show that even this subset is distinct and should be treated differently from patients who have OCD/tics without the autoimmune component. This is why she ran the trial with Nicolson in 2000 called "An open trial of plasma exchange in childhood-onset obsessive-compulsive disorder without poststreptococcal exacerbations." That study was a parallel to the Perlmutter 1999 study. In Nicolson it was shown that kids with OCD who did not have exacerbations associated with infections did not get better on PEX. In Perlmutter it was shown that kids with OCD exacerbations associated with infections did get better on PEX and IVIG. There were a bunch of case studies inbetween.

 

What I'm trying to highlight is that Swedo probably got the trouble with the TS crowd because she included tics as her critieria rather than showing OCD symptoms post-strep, then broadening to OCD + tics post strep, then broadening to tic only post strep, then broadening to non-strep infections, ...

 

Buster

 

 

I think that PANDAS is an absolutely wrong name for the condition, because it delimits the group of "valid and accepted" patients.

That is, they must be pediatric and have Strep, and if they do not, they are not valid for the club.

 

My hunch is that this is a condition, like cancer, in which certain immune related processes take place and affect the brain and cause certain (long possible list) of symptoms and react to certain therapies which nowadays seem to be mainly antibiotics (per bacteria) and immunomodular therapies.

 

Dr T. suggested at some point the name should be changed. What do you think?

I think there should be an overall grouping of PIAND (Post Infectious Autoimmune Neuropsychiatric Disorder) with sub-categories that delineate the triggering infections.

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