posted
I'm noticing a few parents with Lyme+PANDAS/PITANDS kids on the board. Have you heard of any kids with
PANDAS/PITANDS symptoms recovering? My son has congenital Lyme and hasn't improved
with any abx or alternatives.
Just looking for a ray of hope.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
How long has your child been on treatment? Symptoms? Any treatment on co-infections?
Yes, they get better. For mine I thought it would be quicker, but unfortunately it hasn't been.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
We started out with a PANDAS dx, did PANDAS treatments- the improvements never held. We did 2 high dose IVIG's.
I kept hearing about Lyme with the PANDAS kids- sounded too far out to me.
Did a Labcorp WB, daughter came back positive on band 23.
Went on to more testing, here we both are.
We are only in month 5 of Lyme and co. treatment- and, there are more health layers to deal with.
Daughter waxes and wanes- herx, etc.
Too soon to tell anything- I do see overlap with pandas and Lyme- and my daughter fits the pandas criteria perfectly.
Chronic infections causing neuro symptoms in children.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
My son had been on antibiotics for a while. I've been flooding the internet telling everyone that
it was two years, but now I'm not so sure... maybe 1 1/2 years. I'll have to call my doctor.
He (we) were treated for yeast/fungi with diflucan along with the antibiotics. Neither of us have
been tested or treated for co-infections.
We visited a Lyme friendly doctor who was willing to work with us, but admitted he is not a lyme
specialist. We stuck with him because our insurance covered it,
and he was open to learning and helping us.
The problem with him is that with every new antibiotic he would get more sick. That's why we
stopped treating about a year ago. He started with Tourettes syndrome, joint pain, and heart palpitations.
He ended with every single symptom on the PANDAS list.
They never entirely go away. Ups and downs... but my son has never returned to normal. I got
frightened that he would go completely non-verbal and stopped all treatment.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I am by no means an expert, just my own experience, coupled with compulsive reading ;-)
You might want to look into getting more testing done. Did your child test positive for strep? Have strep titers pulled? You haven't had any Lyme testing?
I wonder if treating yeast, with antibiotics, might have led to gut bacteria for your child- it can be a tricky balance.
I will tell you- when my daughter is in a herx, or exacerbation of some kind, it all looks like PANDAS.
Vocal ticcing, copralalia, OCD, and wicked impulsive/ loss of control (which Dr. J. says is the hallmark of Lyme in children.)
She does well in school, holds it together, let's it all out at home.
HTH-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Thanks surprise. I'll have to look into that.
My son tested negative for strep. He was one band short of being CDC positive for Lyme. He fits the list here EXACTLY - http://webpediatrics.com/pandas.html
It's like the list is describing my son. The only things that are not a daily occurrence are the hyperactivity, aggressiveness, anorexia, and hallucinations. But he's had them.
He's a teenager and for much of the day he behaves like a toddler. If I could only get rid of this one symptom (or the terrible anxiety!) my heart would hurt so much less.
Hearing about another child getting rid of these symptoms would give me hope.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Hi-I know that website, and know that symptom list well, we fit it, too- Yes, the age regression part-YES, the anxiety-
I will say that I have read parents testimonies that this is really Bartonella- and when the child is treated for Bart, Lyme, et al, there IS recovery.
I would not be spending my life savings for LMMD treatment if I did not believe in my heart this was true, my last hope with this.
Also, at our first LLMD appt. for my daughter (I hadn't been tested yet, yes, I have it too)
I said: We've been treating PANDAS for the last year. She fits PANDAS to a 'T'
As the Dr. looked over her Lyme testing I had already done and brought with me, the Dr. said: 'It is Lyme. PANDAS is over diagnosed."
I am not saying you child doesn't have PANDAS- I don't know. Just sharing our story- similar to yours.
Wish you the best, hang in there, I know it is a hard road.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Thanks surprise... (Looks like I'm living on lymenet! LOL)
I don't believe it is PANDAS/PITANDS. My instincts tell me this is NOT auto-immune. But I use the label because it fits so well.
So interesting about the bartonella. My symptoms keep leading to bartonella...
I'm confused though... how is bartonella treatment different? We've been on many different abx and some are bart ones.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
My son is PANDAS, not lyme and his strep titers are normal! There are 5 criteria for pandas. if PANDAS is over diagnosed, then I am a monkeys uncle! I had to take my on to the NIH to get a diagnosis.
Posts: 3905 | From USA | Registered: May 2007
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
Surprise has lots of great advice.
Sadly, there is more than one infection that can cause PANDAS type of symptoms.
Detox also plays a crucial part in all of this.
I know I sound like a broken record....but....please also check for Mycoplasma infections.
We were spinning in circles until this was addressed.
My heart goes out to you - this is a horrible road that no child should ever have to go down.
Posts: 1408 | From Tx | Registered: Nov 2009
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Over diagnosed meaning:
It is NOT just strep.
Myco. P, Lyme, co-infections, strep.
Hence the new name: PANS
to take the strep only infection part out.
I thought for a year we were only dealing with strep. I had one of the best PANDAS Dr.s treating, said it was only strep, did not offer other testing, we never had high strep titers, either. I also phone consulted with another PANDAS Dr. on the East coast- never mentioned testing for other infections- everyone assumed strep.
That is all I am saying.
Thankfully, with the name change to PANS, there is now more awareness that other chronic infections can cause the neuro symptoms of PANDAS.
We had to spend thousands and thousands of dollars on PANDAS treatments that didn't provide any lasting relief to figure this out.
Just sharing, that is it from me-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
We went down the Panda route too. I thought my youngest just had strep. Unfortunately, she also had myco, lyme, bart & babs. Strep titer is normal now, but was slightly elevated prior.
Strep is serious though, so never discount it. While my older one went straight to the LLMD as her initial diagnosis was lyme, it is the strep titer that is keeping her on meds.
For strep, I think once it's in the house, everyone needs to be checked. My titer is/was off the charts too.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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