Any advice about strep and mycoP titers & immune deficiencies

[kmom]

Feeling confused on some of this...both of my PANDAS kids born and raised until last year in the Caribbean, moved to cold winter in Philly and strep throat became a huge problem then this year from Jan. to Apr. for DD8. Along the way of persistent strep infections we got whole family to have throat cultures. DH and I neg. DS5 pos! Dr. said he's our carrier. DS doesn't complain of sore throats much (nothing to ever have believed strep throat) but has been our sinusitus/chronic ear inf. kid and ironically body/joint pain over the years and many other PANDAS-like symptoms but without the knowledge just honestly thought of him as our tougher child to handle compared to his sister. DD gets T & A and tubes in ears and PANDAS hits likes a flash. After visit to ped, allergist, CHOP, etc. finally see Dr. T and has whole family do bloodwork...focusing on DD @ this point of treatment b/c didn't think DS had PANDAS. Both kids come back with remarkably low strep titers and also low titers for mycoP. It was mind boggling to me at first that we had so much confirmed strep for months and such low strep titers. Then Dr. T explained more. He then tested kids' pneumococcal titers a few weeks later. Here is a part of Dr. T's email response to their results: A normal response is adequate vaccination in 6 of the 7 Prevnar antigens. "DD"shows a good response to 3, and "DS" to 2. Remarkably, this deficiency seems to be serotype specific between the two children. They tend to show weak responses to the same serotypes, and vice versa. This is a very common finding in children with PANDAS and may explain why they never generate high ASO and anti-DNAase B titers. So that explains the low strep titers b/c he said strep and pneumococcal are like 1st cousins and respond similarly. What about MycoP tho? Could that be lurking in them too, especially DS??? I ask b/c the PANDAS seems to manifest differently in the 2 of them. DD--major contamination fears and tics (the biggest issues altho there are more) and DS has more rage, needs everything to be done PERFECTLY, O.D.D, reverts back to childish behavior (cries easily) and some tics. I have read a lot lately where the more rage-filled kids seems to be suffering from MycoP or Lyme. Could MycoP also be compounding the problem but we don't know b/c titers didn't rise? And if so, if Augmentin the best abx choice? He was on Azith and was doing wonderfully (completely new easy going HAPPY boy...DH was AMAZED!!!) but he backslided after a few weeks so we switched to Augmentin. He's doing ok...much better than week he backslided which was horrible but he's not where he was those few weeks when AZith seemed to be working. BTW, both kids having Igenex LD and co-infections test once kit arrives. Any advice is greatly appreciated.

[Fixit]

Feeling confused on some of this...both of my PANDAS kids born and raised until last year in the Caribbean, moved to cold winter in Philly and strep throat became a huge problem then this year from Jan. to Apr. for DD8. Along the way of persistent strep infections we got whole family to have throat cultures. DH and I neg. DS5 pos! Dr. said he's our carrier. DS doesn't complain of sore throats much (nothing to ever have believed strep throat) but has been our sinusitus/chronic ear inf. kid and ironically body/joint pain over the years and many other PANDAS-like symptoms but without the knowledge just honestly thought of him as our tougher child to handle compared to his sister. DD gets T & A and tubes in ears and PANDAS hits likes a flash. After visit to ped, allergist, CHOP, etc. finally see Dr. T and has whole family do bloodwork...focusing on DD @ this point of treatment b/c didn't think DS had PANDAS. Both kids come back with remarkably low strep titers and also low titers for mycoP. It was mind boggling to me at first that we had so much confirmed strep for months and such low strep titers. Then Dr. T explained more. He then tested kids' pneumococcal titers a few weeks later. Here is a part of Dr. T's email response to their results: A normal response is adequate vaccination in 6 of the 7 Prevnar antigens. "DD"shows a good response to 3, and "DS" to 2. Remarkably, this deficiency seems to be serotype specific between the two children. They tend to show weak responses to the same serotypes, and vice versa. This is a very common finding in children with PANDAS and may explain why they never generate high ASO and anti-DNAase B titers. So that explains the low strep titers b/c he said strep and pneumococcal are like 1st cousins and respond similarly. What about MycoP tho? Could that be lurking in them too, especially DS??? I ask b/c the PANDAS seems to manifest differently in the 2 of them. DD--major contamination fears and tics (the biggest issues altho there are more) and DS has more rage, needs everything to be done PERFECTLY, O.D.D, reverts back to childish behavior (cries easily) and some tics. I have read a lot lately where the more rage-filled kids seems to be suffering from MycoP or Lyme. Could MycoP also be compounding the problem but we don't know b/c titers didn't rise? And if so, if Augmentin the best abx choice? He was on Azith and was doing wonderfully (completely new easy going HAPPY boy...DH was AMAZED!!!) but he backslided after a few weeks so we switched to Augmentin. He's doing ok...much better than week he backslided which was horrible but he's not where he was those few weeks when AZith seemed to be working. BTW, both kids having Igenex LD and co-infections test once kit arrives. Any advice is greatly appreciated.

 

I keep hearing the myco p and temperment too..

I am 100% sure the last(current still)onset 4/6/09 was from myco P..ds just ticced/s more...

though as when you feel better you are less grouchey.....

To continue..my thought is even though ds had extremely high myc p igg titers 1 year after onset...i believe there are papers out there that state that mycp can hide in specific organs/spinal fluid...so maybe not on abx long enough like some papers state 6 months..i will try to find them again...i think buster was the original finder of such info or was it pandasdenmark

 

PS i am not dismissing what parents see when they add/change anything

Edited August 27, 2010 by Fixit

[Fixit]

http://answers.google.com/answers/threadview/id/469386.html

 

 

HOW I TREAT: I often prescribe 500 mg of azithromycin twice a week

and/or doxycycline 100 mg twice a day. You may require treatment for

months or years, if your symptoms have gone on for many months or

years: muscle and joint pains, a chronic cough, burning on urination,

severe fatigue or signs of nerve damage. However, long term treatment

with antibiotics is controversial and many physicians disagree with

these recommendations. Discuss your particular condition with your

doctor or health care provider."

Summed up from "MYCOPLASMA, CHLAMYDIA AND UREAPLASMA" by Gabe Mirkin M.D.

http://www.drmirkin.com/morehealth/G144.htm

 

http://www.immed.org/infectious%20disease%20reports/InfectDiseaseReport06.11.09update/PHA_Nicolson_0709_v4.07.pdf

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC523564/pdf/0068-03.pdf

 

fun fact 5 is good

http://s99.middlebury.edu/BI330A/projects/Howard/Mpneumoniae.html

 

still looking for others i have somewhere

Edited August 27, 2010 by Fixit

[kmom]

Thanks so much for the info!!!!