success getting rid of OCD related to Lyme?

[jan251]

Looking for success stories. What treatments helped your child's OCD the most? What didn't help the OCD? Can you describe how long it took to see various levels of improvement in the OCD once you started the "right" treatment(s)? If you had to start all over again, knowing what you know now, how would you proceed?

 

Does anyone combine antibiotics with herbals or is it best to focus on one or the other, and in what order?

 

Thank you for any thoughts or suggestions you can share!

[nicklemama]

I'm not sure I can directly answer your question. We didn't know our son had lyme when we started PANDAS treatment. He was given biaxin, initially, and that helped tremendously. But he wasn't kept on it and he backslid and did not get better. He had IVIG and was again, tremendously better. Prophylactic dose abx just couldn't hold him and his improvement. Then he got mycoplasma pneumonia 19 months after IVIG and he really fell off the cliff. He had second IVIG and it did not help. We sought out a new doctor and she tested and found lyme coinfections. Double antibiotics have drastically improved him. Somewhere along the way, he was tested and found to have MTHFR mutations that are being treated. He takes supplements for MTHFR, inflammation and two abx for lyme/co. He's doing really well. No real OCD. At least not that would be considered to be noteable.

[jan251]

Thank you, nickelmama!!! That's really encouraging as that's actually quite similar to our situation (strep, myco, MTHFR, and now lyme). Haven't started treatment yet for lyme and I am worried about getting the antibiotics right and about long-term gut effects (as there is a history of gut issues). What combo has been working for you? Have you had to rotate through different combos - how long did it take to see improvement once you started the combo? What are you using for inflammation? I'm sorry for being so nosy, but you know how it is... I'm feeling desperate as we wait for our lyme appointment and I want to go in with a good idea of what I'm looking for. My head is spinning from all the reading I've been doing, trying to separate the wheat from the chaff...

[nicklemama]

DS has been on biaxin and augmentin for two years. Despite all the things you read, he has not rotated abx and he's pretty much a typical kid now. He has taken a good probiotic, Klaire Thera Detoxification Suppurt and saccromyces boulliardi for 3-4 years. He takes 600mg of Enhansa 2x day, for the last 2 years. He also takes 1000mg of Omega 3. He takes two forms of B12, P5P, Folate. He takes a low dose iron because his ferritin levels were very low. He takes Vit C, D, E. A multivitamin. Zinc. ALAMax CR, Diflucan for yeast, Interphase Plus.

 

I didn't just buy these and try them. He sees an integrative doctor who did quite a bit of testing to come up with what he needs based on the results of the labs. Its really tempting to buy things and try them when you read about good results on these boards but I have steadfastly kept my foot on the prescribed peddle, so to speak and I can tell you my son is about as typically functioning as I think he's going to get. He was 5 when this all started(now 11) so we think what we have today is our son. We lead a very normal life, as I type this. It could all change in a second so we don't take it for granted and we are trying to savor the moment every day.

 

He had strep this summer w/out a flare. As long as we avoid fluoride at the dentist, he has not had tics.

[jan251]

Thanks for all those details, nickelmama! Very helpful!!