Has your child been repeatedly exposed to strep since starting tx?

[FallingApart]

Hello,

 

Some may know our story, some not. In short, we have 2 children 17 mos apart. The older is the PANDAS/Lyme child. It took us 2 years after the onset of symptoms to discover that the younger daughter was a strep carrier. We successfully eradicated younger DD's strep in November 2010.

 

But, things are never easy, are they? Through observation, we have observed that my mom is also a carrier. However, her GP isn't PANDAS savvy and isn't likely to prescribe rifampin and clindamycin together when she doesn't test positive for anything.

 

For the first time in 3 years, DD was trending upwards and life was flowing somewhat steadily. Then my mom came and boom, DD went nuts. Now, if I want to be rational, this time it's not as bad as it has been in the past and the exacerbation took a lot longer to come on than it has in the past.

 

So I have 2 questions. Have any of your PANDAS/Lyme children been this bombarded by strep since starting Lyme tx? If so, what was the initial journey like?

 

Also, my terrifying question is: do any of you have a carrier in your house that you successfully erradicated, only to have the carrier state return? I'm slightly concerned that younger DD could possibly have strep again.

 

Needless to say, my name fits me well tonight.

[Suzan]

Oh no! HUGS! I don't have much experience so I am mostly offering support. My Dad was a carrier years ago. He kept giving it to my siblings at one point. He did get treated and suposedly all is OK now. However, my girls also seemed to get worse while visiting so I was wondering the same thing about it coming back.

 

Hang in there. It's so much to handle all at once.

 

Susan

[sf_mom]

My husbands ASO is 244 and anti-DNase-B is 980 currently. These numbers are up from when we treated him for strep carrier state last year. He had minor Lyme symptoms since childhood that have all resolved when treated with combo'd antibiotic. This was prior to discovering Lyme/co-infections for the rest of the family. We have finally tested him for Lyme as well. He has some positive/IND IGG bands... so possible exposure or past infection with no IGM bands present. We proceeded with Lyme provocation testing and he was negative. It is truly a mystery. We will provoke with herbs and are still on the hunt for potential Lyme/co-infections to ensure my husbands long term health. We also want to be assured he is not re-exposing me to Lyme over and over.

 

We tested extended family members strep titers at one point and found my nieces to also have extremely high ASO and Anti-DNase-B titers.

 

The good news. Last year our older son was reactive to strep. We had documented cases in his class about every two weeks last winter with a rise in symptoms. This year he has not been reactive to strep at all that I know. It is possible to contract strep on combo antibiotics and have difficulties resolving due to underlying chronic infection. At one point, our LLMD felt DS had impetigo due to rash on his face. It turned out not to be impetigo but would have rotated antibiotics to treat more directly if it was positive. Currently, we only notice an increase in symptoms when there is an antibiotic rotation or change in herbal protocol.....so, herx response. Even that response is starting to settle. Our Dr. refers to it as a hyper immune response (reaction to exposures and new viruses/infections) that needs to be turned down and normalized. One thing we do additionally, is we put antibiotic ointment into our kid's noses fairly regularly to provide an extra layer of protection from harboring any bacteria's and being exposed to additional bacteria's. Our son has also been physically ill with a cold or what looked like 5th disease three times since last November and exposed to the flu over Christmas from family members with no increase in symptoms.

 

My current perspective is... We do not expose our children to 'obviously' sick individuals. BUT, I can not control who or what our children are exposed to unknowingly or keep them away from their father who has high titers. We are doing everything possible to help them deal with these continued assaults/infections that crop up while the hyper immune response turns down/off. As a result we have chosen to focus on gut health. There are a number of ways to go about rebuilding the gut but we have chosen the following: rebuilding mucal lining wall with Ketotifen, hd probiotics, a ton of daily detox and food sensitivity elimination diet.

 

We also believe that re-exposure to bacterias/viruses is critical to the process to essentially retrain their bodies to respond at some point to illnesses properly. We have kept our twins out of preschool but will be entering them in the fall as a result. We have one child's strep pneumo titers beginning to turn around. He was originally deficient in 13 or 14 serotypes. Now he is deficient in 10 of 14 serotypes so we are making improvement. Hopefully via better health and future exposures he will gain proper immunity.

 

As the bacterial load comes down the reaction decreases and they are better able to handle new infections. All this takes time as you eradicate one infection/virus at a time.

 

-Wendy

Edited April 6, 2011 by SF Mom