low/no titers for strep or myco...even after documented cases....

[eljomom]

I'm on forum overload today, if you haven't noticed. So dd7 had a positive rapid about 4-5 weeks ago. Pandas doc and ped. said no need to test titers...they aren't really helpful, etc. ENT ran them anyway, which was about 3 weeks after positive rapid. Her ASO was "6." When we first tested her ASO back last fall, her ASO was....."6." EXACT same number, which I find just a little weird.

 

DD has had pneumonia 4 times. The last time was in March 2010. She had had a cough and fever, seemed to get a little better (well, fever did), but then tanked again about a week later, with another high fever with the cough. Records say "myco p ?" I will have to look back and see if we x-rayed for that one. Nonetheless, she took abx and got better really quick. Maybe it wasn't mcyo p, but strep instead with the second fever? That's irrelevant. And maybe the other pneumonia's were viral (but I remember one of the docs saying the way the x-ray looked it was likely bacterial) or from something other than strep. Tested myco p IgG and IgM in November, and it was negative.

 

To boot, dd's immune panel was "normal." How can this be? You don't mount an antibody response to strep (thus no titers)....doesn't this sound like some sort of immune issue in and of itself?

 

Just curious...again...

[airial95]

We have the exact same scenario - 8 positive cultures, never a rise in titres and annoyingly normal immune panels. We went to the immunologist yesterday for the first time ton see what the he'll was up. She was referred to us by Dr Murphy's office and was AWeSOME! My son is in full flare right now and was in rare form (the type of thing you want when you're in a skeptics office!). She understood PANDAS, and described my sons situation this way: his immune system is functioning normally, he mounts a proper response to strep, and since it's doing it's job, you won't necessarily see a rise in titres, the problem is that the strep antibodies he produces are "defective" in some way, which is why they misdirect to the brain. Unfortunately, there's no test for defective antibodies, just if you're not producing enough or too many.

 

She said his immune system looks great, we're "just" dealing with PANDAs ( that's a pretty big "just" if you ask me). At this point she's indicating that we might need tonsils out in the future (ped just recommended that last week, so we see the ENT next week).

 

It made sense to me when she was explaining it, I'm sure I didn't donut justice here.

[dcmom]

Eljomom_

 

I will try to get my science right. I think most of this is in the pinned threads above- which, if you haven't, you should read...

 

30% of people (or children?) do NOT make high ASO and Anti D Nase titers in response to strep. Therefore, normal titers are (or can be) meaningless, while raised titers indicate previous infection. There IS a paper on this somewhere....

 

Also, ASO and Anti D Nase are titers in response to the toxins released by strep, not the strep itself. I do not believe that there are any thoughts that low titers after infection equate to any deficiency or inherent problem.

 

Both of my kids have "normal" immune numbers. In fact they have been normal on every test except for Dr Cunningham's anti neural antibody test (which is not being done at the moment). It is frustrating, but it is good not to be dealing with other problems.

 

One more thing- your child may not be pandas, on this forum we tend to want to open the tent to everyone who comes by, BUT it is also documented somewhere, that many of the kids who get pandas, do so with a case of strep without typical symptoms. We were very luck to culture at onset of ocd because we learned of pandas- both dd's had strep at the time, and their symptom was only fatigue. Would have been very easy to miss, without the psych issues. Strep can resolve on its own without antibiotics, so in that case, it may be impossible to have definite proof if your child was initially triggered by strep.

 

 

If your daughter did have pneumonia, and it seemed somewhat chronic- that does sound like myco p could be a factor. I believe Dr T finds a lot of myco p in his patients, and has some luck with biaxin- so that could be an antibiotic to consider.

 

I used to live right near Dr L, and could recommend a cardiologist, ENT, and LLMD if you are in need of these docs in the DC metro area.