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ASO still hi, DNASE-B AB normal, no PANDAS?


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Hi,

 

Just received blood test back...

 

ASO AB 375...3 months ago it was 368

DNASE-B AB 189...normal

Streptozyme Screen....Positive A

 

We've been treating lyme for 2 years then found Babesia, treating this for 1 year when I thought possibly he could also have PANDAS..only came across the ASO AB test after I had him tested because I had strep.

 

My DS (23) doesn't speak, mentally disabled by all this, was "normal" before this all started.

 

His babesia level is now 1:64, 3 months ago it as 1:1024 (normal is under 1:256) so I guess were doing much better as far as that's concerned...numbers going down.

 

Now treating Bart (suspected). Last test was negative.

 

So does this mean my DS does not have PANDAS? Within the 1st year this all started he did exhibit some PANDAS symptoms (looking back) OCD, rage. Both have "gone away". Didn't know about PANDAS back then.

 

any thoughts?

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Has he ever cultured positive for strep? (Many PANDAS kids get strep w/out typical symptoms.)

 

Did he get any increased symptoms when you had strep?

 

Negative strep titers (ASO or anti dnase b ) do not in any way rule out PANDAS. Many PANDAS kids have normal strep titers http://www.latitudes.org/forums/index.php?showtopic=16476

 

So your son was normal until 2 years ago?

Edited by EAMom
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Hi,

 

thank you and yes, he was normal until 3 1/2 years ago (Dec. 09) when this whole nightmare started.

 

Started acting strange literally overnight (first didn't sleep for 3 days and then wouldn't get out of bed for 3 days and actually wet the bed...we were completely stunned, he was 19 at that time)...brought to regular doc who first said he's depressed and gave Paxil (we knew that we BS but figured give it a try for a bit), after a couple of weeks we brought him back and said to test for everything and blood work came back positive for lyme, all bands positive and rocky mountain spotted fever.

 

Doc gave usual 30 days doxy...kept declining in symptoms, forgetfulness, memory...doc added amoxicillin and another 30 days doxy after begging...still declining. Brought to LLMD, had additional test, confections (babesia/bartonella) negative. Clamydia Pne. positive.

 

Stayed with that LLMD for 6 months, DS still declining. Was extremely aggitated, mad, hitting walls, slamming doors. Now looking back would have stayed with that LLMD but at the time we didn't know what we were dealing with. Didn't know lyme could get like this.

 

Switched LLMD's (stayed with this one for 1 1/2 years) during that time started with OCD (washing hands/going into bathroom and sitting for long periods of time without going) got so bad we had to shut water off in house. Also had the need to confess things that happened over a year ago...actually called the police to confess an minor car accident he had the previous year when he was normal. Didn't know about PANDAS then and LLMD never mentioned it. These behaviors "went away" gradually. Again declining, not speaking, laughing on/off daily uncontrollably, completely lost.

 

Then switched to another LLMD but for only a few months before we could get into the LLMD we currently have. Also had metals tested and that's when blood test for Babesia came back positive. Started treating that, by this time DS kind of leveled off like he is now. Doesn't/can't answer questions, his main symptom is the laughing which is very bad, lost, no reaction to anything good or bad, just sits or walks around house laughing. Actually didn't sleep one wink last night because of it.

 

He's mentally disabled now, cannot be left alone-goes to adult daycare, just does what we say or ask...needs guidance with everything. Sleeping is a crap shoot.

 

Now starting to treat Bartonella (suspected) with Rifampin/Minocycline and pulse Tindamax...still on Malarone/Art.

 

He's been on multiple meds (too many to list), Doxy IV for 9 months, takes tons of supps, probiotoics. Actually starting IV chelation this week because lead came back 34 (normal is 2). Is there another way to rid of lead besides IV?

 

Basically at our wits end....never any better except some random days, he might have a good one...by that I mean no laughing, might actually answer a question correctly.

 

Been seeing same psych doc (Dr. Bransfield) since this whole thing started. Nothing he prescribes works/helps. Is on Seroquel randomly, it does sometimes calm him from laughing.

 

Sorry so long...Just found this PANDAS forum a few months ago and after reading many posts (old and new) PANDAS symptoms seem to fit....lyme is a lot of physical pain and my son never had any, still doesn't, physically he seems fine....its all mental.

 

Brought up PANDAS at my last appt. with LLMD and they agree, could be PANDAS as well. Was going to go to Dr. T but from what I gather, same meds treat both (lyme/babesia/PANDAS) so I canceled appt.

 

Money is getting very tight, trying to spend it only where needed.

 

I have learned more from this forum then from anywhere else.

 

 

Any insight or help is always greatly appreciated.

His Mom

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whoops, sorry, didn't answer your question.

 

A few months ago I had strep so I had him tested just to be safe, again he can't/doesn't tell us when anything is wrong. We never know if something is hurting him or not.

 

He did not have symptoms but I told my doc to swab him just in case. The swab came back negative but his ASO titers were very high so she put him on Augmentin XR (?) for 30 days, didn't help.

 

That's when I searched for Strep/Lyme and found the PANDAS forum.

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if he is on many supplements, they or their dosage may be in part responsible for the symptoms. when our kids overdose, their main symptom is laughing. we then stop supplements for a few days and start again with smaller doses.

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