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Re: Kara - 5%

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My dd is still on antibiotics. She takes two twice daily (Zithromax and Bactrim)

and a cyst buster (Tindamax) on weekends only. Our doctor's philosophy is to

continue antibiotic treatment until two months after all symptoms have subsided.

I'm hoping we are getting close. (we also give her pro-biotics to replace the

good bacteria in her gut that the antibiotics destroy).

When her OCD appeared in the past, we do ERP therapy on our own with her

(originally we did it with a therapist). But her OCD is almost non-existent now,

so there is no need for the ERP on a regular basis.

Usually, when there is a spike in a PANDAS/PANS behavior (OCD, ADHD, emotional

lability) we attribute it to " herxing " (die off of the bacteria causing and

uptick in symptoms)and try to help " detox " by doing epsom salt baths and giving

activated charcoal. We usually do this a day or two after we've given the cyst

buster, Tindamax. This is pretty common stuff in the Lyme world. I'm not sure

how much this detoxing works...but it's certainly not harmful and makes us feel

like we are doing something. The spikes are now pretty short lived, lasting a

few minutes, a few hours or at most a day or two.

If PANDAS/PANS is at the route, my understanding (and our experience) is that

therapy will help very little until the infection or autoimmune component is

being treated. Once that is addressed, the therapy can help healing and

retraining the brain.

Kara

>

> That is wonderful to hear - what are you doing for last 5%? Is she still on

meds? Do you do maintenance stuff? I'm trying to understand where to go next

with son. He says his contamination thoughts have come back some but so far no

rituals. <<<yes!!>>> :)

>

> We are seeing therapist once/week or 2 weeks but because he has no rituals,

she has not assigned erp, just told him to keep touching door knobs. :) She has

OCD herself so she has credibility with him.

> Rhonda

>

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My dd is still on antibiotics. She takes two twice daily (Zithromax and Bactrim)

and a cyst buster (Tindamax) on weekends only. Our doctor's philosophy is to

continue antibiotic treatment until two months after all symptoms have subsided.

I'm hoping we are getting close. (we also give her pro-biotics to replace the

good bacteria in her gut that the antibiotics destroy).

When her OCD appeared in the past, we do ERP therapy on our own with her

(originally we did it with a therapist). But her OCD is almost non-existent now,

so there is no need for the ERP on a regular basis.

Usually, when there is a spike in a PANDAS/PANS behavior (OCD, ADHD, emotional

lability) we attribute it to " herxing " (die off of the bacteria causing and

uptick in symptoms)and try to help " detox " by doing epsom salt baths and giving

activated charcoal. We usually do this a day or two after we've given the cyst

buster, Tindamax. This is pretty common stuff in the Lyme world. I'm not sure

how much this detoxing works...but it's certainly not harmful and makes us feel

like we are doing something. The spikes are now pretty short lived, lasting a

few minutes, a few hours or at most a day or two.

If PANDAS/PANS is at the route, my understanding (and our experience) is that

therapy will help very little until the infection or autoimmune component is

being treated. Once that is addressed, the therapy can help healing and

retraining the brain.

Kara

>

> That is wonderful to hear - what are you doing for last 5%? Is she still on

meds? Do you do maintenance stuff? I'm trying to understand where to go next

with son. He says his contamination thoughts have come back some but so far no

rituals. <<<yes!!>>> :)

>

> We are seeing therapist once/week or 2 weeks but because he has no rituals,

she has not assigned erp, just told him to keep touching door knobs. :) She has

OCD herself so she has credibility with him.

> Rhonda

>

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Thanks for explaining - the connection between the immune system and OCD is

fascinating to me and I'm trying to figure out if there's a link for my son.

They put him on two abs in the hospital for a couple infections and I have to

wonder if that helped with his OCD as well. I know it cleared up his skin very

nicely! :) We use bentonite clay for cleansing - I forgot about activated

charcoal.

Rhonda

Re: Kara - 5%

My dd is still on antibiotics. She takes two twice daily (Zithromax and

Bactrim) and a cyst buster (Tindamax) on weekends only. Our doctor's philosophy

is to continue antibiotic treatment until two months after all symptoms have

subsided. I'm hoping we are getting close. (we also give her pro-biotics to

replace the good bacteria in her gut that the antibiotics destroy).

When her OCD appeared in the past, we do ERP therapy on our own with her

(originally we did it with a therapist). But her OCD is almost non-existent now,

so there is no need for the ERP on a regular basis.

Usually, when there is a spike in a PANDAS/PANS behavior (OCD, ADHD, emotional

lability) we attribute it to " herxing " (die off of the bacteria causing and

uptick in symptoms)and try to help " detox " by doing epsom salt baths and giving

activated charcoal. We usually do this a day or two after we've given the cyst

buster, Tindamax. This is pretty common stuff in the Lyme world. I'm not sure

how much this detoxing works...but it's certainly not harmful and makes us feel

like we are doing something. The spikes are now pretty short lived, lasting a

few minutes, a few hours or at most a day or two.

If PANDAS/PANS is at the route, my understanding (and our experience) is that

therapy will help very little until the infection or autoimmune component is

being treated. Once that is addressed, the therapy can help healing and

retraining the brain.

Kara

>

> That is wonderful to hear - what are you doing for last 5%? Is she still on

meds? Do you do maintenance stuff? I'm trying to understand where to go next

with son. He says his contamination thoughts have come back some but so far no

rituals. <<<yes!!>>> :)

>

> We are seeing therapist once/week or 2 weeks but because he has no rituals,

she has not assigned erp, just told him to keep touching door knobs. :) She has

OCD herself so she has credibility with him.

> Rhonda

>

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Thanks for explaining this Kara! Again, so glad your daughter is doing so much

better. Hope she CAN get off the antibiotics soon, sounds like you are close :)

Interesting about the epsom salts baths. So maybe when I tell my 20yr old " OCD "

son to go soak his head, I should tell him to add epsom salts, might actually do

him some good - got to have humour!!!

Warmly,

Barb

> >

> > That is wonderful to hear - what are you doing for last 5%? Is she still on

meds? Do you do maintenance stuff? I'm trying to understand where to go next

with son. He says his contamination thoughts have come back some but so far no

rituals. <<<yes!!>>> :)

> >

> > We are seeing therapist once/week or 2 weeks but because he has no rituals,

she has not assigned erp, just told him to keep touching door knobs. :) She has

OCD herself so she has credibility with him.

> > Rhonda

> >

>

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