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We have our first LLMD appt next week. I just need reassurance -- the kids with tics and OCD as their primary Lyme symptom are getting better/cured with LLMD treatment, right?


I know this seems silly to ask, but DS9 seems so atypical -- his tics and compulsions seem to be brought on by specific events (especially reading) that I keep wondering if they are related to eye movement or head position, rather than a disease. I want reassurance that if we go down this heavy duty antibiotic path, these neurological symptoms will get better. That's what's happening to a lot of our kids, right?



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My dd9 does not have tics but her OCD is often triggered by whether or not she thinks I'm mad at her or if things are too loud or too messy. This has already gotten a lot better with lyme treatment. When she gets sick with a cold or other virus, things will ramp up and she will start to get triggered again but the last time, it calmed back down about a week after.


If the symptom is caused by lyme, I believe it will go away. Our LLMD believes that pandas and lyme can coexist and that treatment of pandas may be necessary after treatment for lyme. I am hoping all symptoms will be gone with lyme treatment and I think we are going in that direction, but we may not know until they get strep again.



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Our LLMD has helped many children with only TICs and OCD related to multiple chronic infection.... full sustained remission of symptoms. He does not distinguish between Lyme/Pandas. He believes the immune system is having a hyper response to a chronic infection/s. Auto immunity occurs because there is a chronic infection and the body goes haywire trying to find it and kill it. Eradicate infection, auto immunity stops.


None of my kids have distinguishable OCD anymore, our older son at sudden on-set presented with predominately TICS. We only experience TICS in older DS when we force a HERX by a rotation of antibiotics. The TICS tell me the infection/toxins are still present in his body and further treatment is required. I have seen TICS come and go so many times now with these rotations my confidence there. With each regimen change the symptoms are fading. His only indication he has Lyme right now is a mild cough (lumping in TIC category but debatable), dyslexic errors (which might be age appropriate issue).... dilated pupils are a lot less frequent so I'm assuming its resolving. The cough was the very first symptom he had at 4 1/2 years of age and now almost 7. Unfortunately, we were told the cough was a habit and now we know better.


We've been treating older DS for PANDAS/Lyme for 19 months now and still believe we have a good 6 months to year of treatment left. I believe it takes a long time for the immune system to cave and it takes a long time to recover as well.


Hang in there.



Edited by SF Mom
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With Our DS4 with Lyme/Pandas we noticed a motor tic and mild OCD and then sought help. Retrospect, it was a lot of neuropsych symptoms that we didn't recognize. Can't help too much with treatment since we're still seeing up and downs with the tic. Although the OCD seems to be clearing thanks to 2 antibiotics.

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