Still PANDAS when anti-neuronals are normal but CamK is high?

[Kayanne]

Does your child make strep pneumoniae titers? Just curious - my son has issues with that (only makes one of 14, and I won't revaccinate) So, I'm wondering if mycoP kids also have this strep pneumoniae issue.

 

Which vaccine did your son already have? Pneumovax23 or Prevnar7? I'm just curious. Thanks.

[norcalmom]

actually just found out he didn't have either. we went back and checked his immu's - he missed the cut off date by weeks for this. Born in 1999, the year they started recommending this vaccine.

Immunologist I met with last week says it doesn't matter - he should make the antibodies regardless, he's been exposed to the virus (undoubtedly - he had pneumonia twice).

So, today we draw blood for B-cell subsets, which is another way to look at the function of these antibodies. Not as good as revaccination(or for my son - vaccination), but another way to look at what is going on to confirm that this is an issue. It may be a non-issue. Since he doesn't get frequent bacterial infections (for example -pneumonia twice a year, which is when my insurance considers it problematic enough to cover ivig)

 

Have you ever checked your sons titers?

[PhillyPA]

norcalmom - Thanks for the information. Yes we tested my DS8 for Lyme. Yes, we tested for mycoplasma. CHOP tested for the mycoplasma. About 5 doctors tested for Lyme. All negative.

 

My DS6 pandas started with strep and is completely under control. He gets perfect test scores, is extremely well behaved. His teacher said not only is he extremely well behaved but he is also shows a lot of leadership qualities. He is totally fine. Yes, he got mycoplasma pneumonia this past Novemeber and he DID react to it, but he is completely recovered. I have zero worries about him harboring a chronic infection. So far, if he gets sick, we know our plan of attack and it can be treated.

 

My DS8, I believe started with strep. He and his brother were both sick at the same time. His brother tested positive for strep and he did not. I think it was a poorly done swab. I think he had strep. But - before his collapse, he did have a cough that would not go away. Mycoplasma, although he always tested negative, has been a worry. But, it could have been strep pneumonia. His MRI showed a sinus infection. So, it could have been strep in the sinuses.

 

I am curious, how do they treat chronic mycoplasma infections?

Edited March 7, 2011 by PhillyPA

[norcalmom]

similar to lyme, according to what I've read. 6 weeks of Doxycycline (usually, but not always...) and then rotate antibitoics -6 weeks on, 2 weeks off. Doxy, Azith, and other anitbiotics that are considered "intracellular"...and sometimes augmentin or ammox used in the 2 week off period, or in conjunction - the entire time. Titers are a problem - most people don't make IgM for subsequent infections. And IgG can stay elevated for years, after an infection (this from last immuno visit) but I can't find any studies on that. So, titers don't measure much except if you child is in the middle of an infection - and its URI. Chronic - is not the same.

 

Just got back from blood draw ..what a nightmare. I'm gong to have to get something to "take the edge off" next time (30 minutes in the little room with 3 nurses and me to get him in chair...so tense - vein collapsed - kicked a nurse, I thought he was going to pass out, he was hyperventilating and crying. He just infromed me that he was so scared he wet his pants a little) At least I'm going to need something to take the edge off. He's 12 in 2 weeks - weight almost as much as me - we aren't talking about a little kid.

 

He always been nervous - but his was BEYOND- he's been freaking for days. And he told me in car that it isn't just the fact he hates needles, its the pandas that makes it so he can't think of anything else when he's oging to have ablood draw (even though he knows it isn't that bad..)

 

I

[eljomom]

norcalmom--this is very interesting! just trying to find a doc to do the testing has proven impossible for us.

A couple questions:

 

Do kids with "chronic myco p" have any symptoms? Lingering cough? If my dd had walking pneumonia a year ago, but healed (no symptoms), and IgG and IgM were both non-existent in tests done in October, is there any reason to do PCR?

 

Also, is Swedo starting a pitand study? Or just writing criteria in case someone else does down the road?

 

I was trying to understand the abstract in the second paper, but this threw me: "as the borrelial seronegative patients also exhibited elevated anti-neural antibody levels." Not understanding this statement....I thought only PLS patients showed high. Didn't the PLS seronegative patients show no antineuronals? Confused....

 

Thanks for all the insight and info.

 

 

Philly

Have you checked both your kids for chronic infection? Its a pain in the butt - but worth doing. Chronic mycoP does not go away on one anitbiotic alone. I'd recommend the PCR testing - the igg and igm are only telling if you have an active URI. Since your kids just had it, they will probably have elevated IgG regardless - and the IgM usually only is high in the early part of the disease. My son's igG was 2450. No IgM. I have several different opinions of what that could mean, so now have to do the PCR test - should have just done that in the first place.

 

Does your child make strep pneumoniae titers? Just curious - my son has issues with that (only makes one of 14, and I won't revaccinate) So, I'm wondering if mycoP kids also have this strep pneumoniae issue.

While we can protect kids from strep throat, I don't know if there is anything that can protect them from mycoplasma (or strep penumoniae) if they are incapable of making this antibody.Chronic mycoP has phcyological and neurological symtoms. Also, its known cause of autism.

 

If you are going to do PCR testing, go to a lab that will tell you the strain. Below is link to a lab that does this testing, but your immunologist or infectious disease may have a lab as well.

 

We are looking into Lyme too- and if you are interested in that (and I'd suggest it - since mycoP is very common in people with lyme). Also, a big pain in #$%!

 

Yours was a good analogy. Our son's didn't go on for that long before ivig - I could see part of his city was being bombed. And now, he is backsliding after ivig (7 months ago - he still reacts to viruses) and his "baseline" is sliding in the wrong direction. So, I'm looking at another, in conjunction with investigating and treating any and all possible chronic infections. Basically the treatment is different antibiotics, rotated in, probably in somewhat higher doses and sometimes in combinations depending on type of infection they have.

 

In lyme (and other chronic infections?) I've read that it causes immune system dysfunction. Which leads to getting other infections (and basically messed up immune function - exactly what our kids have).

 

I'm not saying that all pandas kids have this. I believe that there are several causes of pandas. Lyme, strep, mycoplasma..perhaps more. And perhaps in conjunction. Swedo is already writing the study criteria for PITANDS. I just wish we were in on the fact they know what else causes it. We should all be checking for mycoplasma and lyme as well. God knows I've done sooo many tests on my kid - whats a few more - esspeically if they are tests KNOWN to cause the symptoms (and the high cam K / anitneuronals)

 

So - multiple chronic infections. Here is a link to a page fromt he bioloigist that discovered that Gulf War Syndrome was really mycoplasma. He's a bit of a conspiracy theory guy when it comes to war (be believes that exposure to weaponized mycoplasma, along with the 20 or so vaccines the soldiers got just prior to deployment casued Gulf War Syndrom, as well as a HUGE number of austistic children born to these infected soldiers) - but if you can get beyond that (not that I don't believe it, I just have no room in my brain for it)- and look at his papers and research on chronic infection, it seems to make sense. He has a list of common coinfections - once you have one, much more likely to have more because of immune dysfunction (his theory not mine - but he ran the tests to see the % of coinfections).

 

And strep - nothing that says that your kid doesn't also get strep and react to strep. So an underlying chronic infection + strep = immune system cluster#$%& in our kids.

 

Interestingly enough - Cunningham's got a paper on Cam K and lyme..and guess what they inject the mice with? ...strep. Something about the strep antigen and lyme antigen (b.burgdoferi) proteins being so similar....I don't understand the paper very well, and it looks to be investigating heart and joint aspects of lyme (this is how cunninhgam fell into the pandas stuff - investigating cam K and heart issues after strep infection - the whole ARF and Syndeham Chorea connection) - but its clear she is making connection between lyme and strep on molecular level. Below is an excerpt:

___________________

We first compared amino acid sequences of Streptococcus pyogenes M protein, a known inducer of antibodies that are cross-reactive with myosin, and B. burgdorferi and found significant homologies with OspA protein. We found that S. pyogenes M5-specific antibodies and sera from B. burgdorferi-infected mice reacted with both myosin and B. burgdorferi proteins by Western blots and enzyme-linked immunosorbent assay. To investigate the relationship between self-reactivity and the response to B. burgdorferi, NZB mice, models of autoimmunity, were infected. NZB mice infected with B. burgdorferi developed higher degrees of joint swelling and higher anti-B. burgdorferi immunoglobulin M cross-reactive responses than other strains with identical major histocompatibility complex (DBA/2 and BALB/c). These studies reveal immunological cross-reactivity and suggest that B. burgdorferi may share common epitopes which mimic self-proteins. These implications could be important for certain autoimmunity-susceptible individuals or animals who become infected with B. burgdorferi.

 

and here is a different study - Chandra not cunningham - saying basically same thing for lyme-

____________________________________

Brain Behav Immun. 2010 Aug;24(6):1018-24. Epub 2010 Mar 18.

 

Anti-neural antibody reactivity in patients with a history of Lyme borreliosis and persistent symptoms.

Chandra A, Wormser GP, Klempner MS, Trevino RP, Crow MK, Latov N, Alaedini A.

 

Department of Neurology and Neuroscience, Cornell University, New York, NY 10065, USA.

 

Comment in:

 

Brain Behav Immun. 2010 Aug;24(6):1025; author reply 1026.

Brain Behav Immun. 2010 Aug;24(6):1027; author reply 1028.

 

Abstract Some Lyme disease patients report debilitating chronic symptoms of pain, fatigue, and cognitive deficits despite recommended courses of antibiotic treatment. The mechanisms responsible for these symptoms, collectively referred to as post-Lyme disease syndrome (PLS) or chronic Lyme disease, remain unclear. We investigated the presence of immune system abnormalities in PLS by assessing the levels of antibodies to neural proteins in patients and controls. Serum samples from PLS patients, post-Lyme disease healthy individuals, patients with systemic lupus erythematosus, and normal healthy individuals were analyzed for anti-neural antibodies by immunoblotting and immunohistochemistry. Anti-neural antibody reactivity was found to be significantly higher in the PLS group than in the post-Lyme healthy (p<0.01) and normal healthy (p<0.01) groups. The observed heightened antibody reactivity in PLS patients could not be attributed solely to the presence of cross-reactive anti-borrelia antibodies, as the borrelial seronegative patients also exhibited elevated anti-neural antibody levels. Immunohistochemical analysis of PLS serum antibody activity demonstrated binding to cells in the central and peripheral nervous systems. The results provide evidence for the existence of a differential immune system response in PLS, offering new clues about the etiopathogenesis of the disease that may prove useful in devising more effective treatment strategies.

 

____________

you can also find case studies on mycp and autoantibodies (anti neuronals) but no big studies. Swedo mentioned that they did a small study of 5 kids - 2 with mycoplasma - (one chicken pox, one chicken pox vaccine and one H1N1 I think)(listen to her recent blog talk radio interview) - I think she called pandas subgroup. I haven't been able to find that study, but basically kids presented just like pandas. They had pandas (except the autoimmune component wasn't triggered by strep but by other infection).

 

Here is a link to that microbiologist that has done a lot of mycoplasma and chronic infection research. Ithink he has his protocat for treating chronic infection (or chronic mycoplasma) on there somewhere.

 

immed.org

 

Please let me know what you find, or have already found on other infections. We are in the middle of our hunt right now. I'm even doing antibiotic challenge on myself for lyme, to make sure DS didn't get from me (I'm from lyme territory originally and my sister had it, and I've had sooo many old neighbors that had it, I feel that if DS has a lyme issue - he probably go it from me, since he has very low risk of tic exposure), but I've had many tic bites.