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

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I was wondering if anyone is being told by their doctor that their child doesn't have PANDAS because although the CamK II is elevated (above 150), the anti-neuronals were normal. Are most of your doctors telling you in this situation that you child still has PANDAS based on the CamK alone?

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Our pandas doc wasn't settled on pandas with just our Cam K (which was 168). Said the antineuronals were more telling....

still not really sure I understand the whole thing, as many times as I've reeled it around in my head :wacko:


Who was your doctor? And what were they expecting to see in the anti-neuronals before they would diagnose PANDAS?

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Please let me know if you find out anything. Our Camk was high, but antineuronals were normal. We have not gotten a clear answer as to what this means. My daughter does respond to antibiotics. I did talk to Dr. Cunningham at one point and she said that probably there was another antibody that she wasn't testing for that was high in my daughter's body. I would be curious if she still feels that way.

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Well, this really goes right along with my "theory"---Cam K being high could be from infection? Seems they are now seeing Cam K is high with "Normal" kids with active strep, or could be active anything for all I care. I have a theory that kids with high Cam K and normal antineuronals are the ones who have a good response to antibiotics. Then the kids who ALSO have high anti-neuronals...these are the kids who have a true autoimmune response going on, and are NOT usually kept in check with antibiotics alone. Just a theory....interested in hearing more though!


Dr. L is the doc who said the antineuronals are more telling to her.


If I had normal antineuronals AND my child responded to antibiotics, I would prefer this I think. Just don't really know...

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Hi Eljomom, I hope I did not mislead you. My daughter does respond to antibiotics, but things are far from perfect. She tics, has bad thoughts, has repetitive behaviors, brain fog, etc. We are going through a rough period right now and it is tough. Still, for the third time she has gone from almost unfunctionable to able to get through the day, albeit roughly. Like a lot of folks on this site, it seems like each time is harder to recover from. So, although antibiotics do help, she is a long way from a 'normal' kid even though the antineuronals tested were normal. I wish I knew why the CamK was so high???!!!

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The first time we took the test my son's CAM Score was 161 and his antineuronals were the highest end of normal. After three ivig's we took the test again. We waited 10 weeks post his last IVIG to test. His CAM score came down to 149 and his antineuronals were ski high.

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Guest pandas16

Phillypa: so the IVIG made his anti-neuronal antibodies go up? how many g/kg of IVIG did you have if you don't mind me asking?

Edited by pandas16
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They do not know why that happened. I didn't ask the lab, I asked his pandas doctor. No idea. However, about a week after his blood was drawn his brother got mycoplasma pneumonia. It caused chaos for both of my pandas sons. I don't know. Maybe it was just demonstrating the battle going on in his brain. Maybe it is like that for everyone. Who get's the Cunningham test that often? Technically I don't think you are suppose to get the Cunningham test until 12 weeks post ivig so we did get it two weeks earlier than we were suppose to. But, I wanted a new lab report to be available for our next appointment with our pandas doctor/neurologist. I plan on doing it again after this next round of IVIG's.


I think I will e-mail the lab and ask them about it. I will let you know what Cunningham tells me.

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My DS6 who got the mycoplasma never had IVIG. His pandas was caught early and it is manageable. He is on augmentin daily. However, when he gets an illness and starts pandas behaviors he needs azithromax to really pull him out. His doctor put him on azith for 5 days because of the myco. I then put him back on augmentin. The augmentin didn't take care of his pandas behaviors so I put him back on azith for about three weeks and the azith pulled him out of it. It took about 6-7weeks for all the pandas behaviors to go away. After the pandas behaviors went away I put him back on the augmentin. The goal of the augmentin is so that he does not get strep. However, if he does get an illness, the azith gets rid of his pandas behaviors and he gets back to baseline.


My DS8 had the IVIG. Is he back to baseline - no. He had serious encephalitis-like regression from PANDAS and he had it for 2 years and 9 months before diagnosis. He got pandas at age 5 and he is now 8 (almost 9). Picture it like this - Picture a country after a devestating earthquake and the whole city is flattened. That was my son's brain. After IVIG several houses are rebuilt and progress is being made but the whole city is no where near being rebuilt. IVIG helped him very much. It provides him much relief. However, normal for us is the way he was at 5 years old. It was the whole beautiful city. It is hard for me to say what percentage better he is because he is not back to baseline, no where near it. For me nothing is acceptable except baseline. IVIG allowed the workers and equipment to get back into the city. Some houses were built, we got water running again and a steady stream of food. We have beds and a comfortable place to sleep. However, the subway is not up and running and I would really like to tour the city again. It is just going to take time to rebuild.


My other son's mycoplasma crashed my DS8 progress. That is why we have to do another round of IVIG. Although he did not get the mycoplasma, he reacted to it. When he started to get a cough like his brother's, I quickly put him on azith. It helped but he still needed another round of ivig. He had his first at the end of January and he goes back for his next one next week. He is back on the upward trend. IVIG is really remarkable and he starts to get relief immediately. (Well, after the 24 hours of a headache and vomiting.)

Edited by PhillyPA
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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.




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.

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