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DS16 is still suffering from a lot of OCD, not as much as before but still too much.

 

If we can successfully treat the Bartonella, will that help with the OCD?

 

I know that I should know that the answer is yes, but 100% seems so far away most of the time.

 

CBT has not made any progress with the bathroom rituals, he just wont believe in it.

 

I know we are so much better than we were, but I cannot be content with a kid who cannot do things he wants to do because OCD wont allow it.

 

 

Thanks in advance,

T.Anna

 

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I think you are asking the $10,000 question:

 

Treat/ eradicate all underlying infections and PANS is gone,

or reset the immune system and PANS is gone,

or treat/ eradicate all underlying infections and then reset the immune system (if necessary)

and PANS is gone.

 

D.) All of the above.

 

The kids in recovery have all done each individually to achieve, I believe, there is no set formula- for the most part.

What I do know about Bartonella, and Lyme disease,

is that they can be difficult to eradicate if chronic (had > 1 year)

and it takes time. And slogging through die off.

And it's hard work, all the detox protocols, note taking, research.

 

I also know first hand with my dd leaving them untreated, when symptomatic,

is a poor quality of life.

It is quite challenging with Lyme infections and PANS,

and oh yes I think Bartonella can be destructive and cause OCD in our kids.

But there is hope.

I have hope again since starting my daughter back up on antibiotics for Lyme and co- infections.

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Our DD who had more Lyme induced ASD symptoms than traditional PANS symptoms but developed OCD on two noted occasions. One time when we rotated antibiotics she developed OCD as a die off symptom that resolved fairly quickly - two months (bartonella). Second time was when a tree fell on our house and we had a plume of debris come through that included mold/asbestos/lead. The second time the OCD hung around for at least six months and is trending better and better as we detox her for these environmental toxins. Her speech has improved and regressed with herx's and exposures to new infections/toxin's as well. Slurring, stuttering, inability to pronounce certain words correctly that were previously fine, baby talk, age regression, increase in non-verbal communication.

 

Our kids are not fully related to each other or me (product of donor egg) but were carried in-utero by me. All the kids have had some type of OCD at one point or another and a similar degree of other symptoms. I strongly come from the position that this is predominately a environmental issue and perhaps there is some genetic switching that occurs due to those environmental issues. For example, all the kids have gluten sensitivities and antibodies for Celiac's for us this seems to be more of a mold issue than a genetic issue.

 

Unloading their immune system of 'whatever' issue we uncovered has brought us towards recovery. It has been an extremely slow process. It was way more than just strep.... we truly had it all. We have done many off label treatments that have helped in various ways. We are hopeful for all our kids futures.

 

Keep treating with whatever works for your son. I think the most difficult aspect of treatment has been seeing them herx for extended period of time 'worse before better'. We have learned to truly understand herx's and strategically plan around them.

Edited by sf_mom
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DD's OCD symptoms were thankfully very mild. They consisted only of drawings of stick-figure girls with their hands held in awkward positions (Egyptian hieroglyphics-like). These pictures would cover her school work, school agenda, homework and any other plain piece of paper lying around the house.

 

Before abx and during the first year of bartonella treatment her handwriting was very primitive and these pictures covered everything. She knew she should be working on assignments, but was forced to draw these pictures every chance she got.

 

I did notice the amount of drawing increased during herxes resulting from changes and increased dosages of bartonella abx. By the time abx treatment was discontinued, the pictures were few and far between, and the handwriting much improved.

 

The only time I have seen the pictures show up since beginning herbal protocols was during a yeast infection resulting from a lack of probiotics. With one 500mg tablet of diflucan and an increased probiotic regimen the OCD has resolved again along with the yeast.

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