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Posted

Last week our LLMD made a very interesting comment about chronic strep. She said that in most of her chronic strep patients, the ASO will drop significantly with lyme treatment, but it never quite goes back into the normal range. She said she has patients in the high 700s and 800s, and they will drop to 150, but then won't change. I found this fascinating, especially as my child has both lyme and PANDAS, and after 5 months of lyme treatment his ASO is FINALLY falling. (Currently 306, after being in the 500s for years.) I'm not quite sure what to make of this, and quite frankly it scares me. If he has high levels of strep antibodies in his blood will PANDAS ever go away? Any ideas, thoughts, comments? Has anyone here seen ASO return to normal levels? Anyone with ASO that just won't get back to normal?

Posted

We've never tested ASO, so I can't answer all of your questions, but the first thing that struck me was to remember that Pandas is about auto-antibodies, not antibodies against strep. So the ASO isn't the enemy and it's not a measurement of how many auto-antibodies you may have floating around.

 

The fact that you're seeing numbers drop, to me indicates that a chronic infection is being reduced/eliminated. So don't lost track of that great indicator!

 

The second thing is that some of the integrative doctors I've read/spoken to feel that auto-immunity, especially when it comes to Pandas, can "go away' once chronic infections are eliminated and the body's balance is restored. That T-reg cells - the ones that regulate B cells (the ones that get out of control in Pandas) - increase and become more effective once the immune system is restored. Some think bacteria like lyme can hijack the immune system and suppress it, with metals, nutritional deficiencies et al and when you get on top of these issues, "auto-immunity" ends up being more "over-whelmed/ineffective immunity". Eliminate the hijackers and you get a "normal" immune system back.

 

I don't know if this is true, or if our kids will always be prone to issues. But it sounds like things are moving in the right direction and you shouldn't lose sight of that. If ASO never returns totally to baseline, does it matter? Do the kids who stay a little high continue to struggle? Or is it just a number and the rest of the clinical picture is vastly improved? I think that's what matters.

Posted

My DD's ASO and anti-DNASE B levels have been in the normal range for well over a year and they were always consistently high (anti-DNASE B was often in the 3000 range). She had chronic strep for 13 years. For the first time in a long time she had a sinus infection a few months ago and anti-DNASE B was up in the 500 range. Just re-did it and am waiting to see if it went down.

 

Last week our LLMD made a very interesting comment about chronic strep. She said that in most of her chronic strep patients, the ASO will drop significantly with lyme treatment, but it never quite goes back into the normal range. She said she has patients in the high 700s and 800s, and they will drop to 150, but then won't change. I found this fascinating, especially as my child has both lyme and PANDAS, and after 5 months of lyme treatment his ASO is FINALLY falling. (Currently 306, after being in the 500s for years.) I'm not quite sure what to make of this, and quite frankly it scares me. If he has high levels of strep antibodies in his blood will PANDAS ever go away? Any ideas, thoughts, comments? Has anyone here seen ASO return to normal levels? Anyone with ASO that just won't get back to normal?

Posted

At PANDAS onset our older son's ASO was 244, Anti-DNase-B was 0. Several month into treating for PANDAS with antibiotics our son's ASO was 205 and Anti-DNase-B still 0. About a year ago his ASO was in normal range and Anti-DNase-B was 90. I was actually excited that he was producing anti-DNase-B.

 

Husband's ASO hovers from 240s to 280s and Anti-DNase-B 680s to 980s. When he was treated as a strep carrier his ASO titers went to 244 and anti-DNase -B went up and seemed to stay stuck at the higher number. Now that he is being treated for Lyme we are hopeful these titers will also resolve into normal range but haven't tested him lately.

 

Remember some of this stuff might be wrapped up in biofilm's as well releasing itself/toxins periodically and perhaps when you get to treating biofilm's along with Lyme treatment you'll have better resolution titers... At least that is my hope for DH.

 

Here is part of a discussion on Facebook regarding strep and biofilm's:

 

"Cohen: I start with enzymes like nattokinase and lumbrokinase, as well as other mucolytic enzymes, to get the best, broad fibrinolytic effect. Dr. Usman feels nattokinase is particularly good at degrading strep biofilms and I think that strep is a very big player in these childrens’ health. I will run strep titers and they will be extraordinarily high. And these children—and certainly some adults as well—will manifest strep as a comorbid infection that has significant implications for neurological function. They will have very OCD type tendencies, and sometimes almost psychotic outbursts. There isn’t a precise, sudden onset with obvious symptoms."

 

http://www.facebook.com/topic.php?uid=44960753282&topic=13555

 

 

-Wendy

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