Tics, PANS, and Lyme

[socalmom]

Hi, Can anyone with a child dx'd with Lyme,PANS and motor tics share their story or tell me how long in treatment before tics subsided? I've been treating DS since March.

 

Thanks

[LNN]

My son had all of these. Tics went away for 18 months in our Pandas days thanks to Pex. They returned for 4 weeks when we used tindamax to treat lyme cysts - I think due to herxing/toxins. They went away once we stopped tindamax. it made me realize that at least one thing making DS tic was a reduced ability to get rid of toxins. So you may want to consider two things - adding more to your detox program and/or slowing down on how aggressive you're being with the lyme. Controlling inflammation is also critical.

[NancyD]

My DD got rid of her tics before we started treatment for Lyme and Bartonella, thanks to HD IVIg, and thankfully they never came back. DD was 13 at the time and she had severe motor and vocal tics. About 10 weeks post-IVIg she was ~70% and within a year she was 100%. BUT, IVIg never helped her anxiety/OCD -- in fact, it got worse. It did help to put her others symptoms (rages, sleep problems, mood dysregulation, etc.) into remission for a year at a time until we treated Lyme and co-infections. DD is 16 now and we're still trying to get to the bottom of the anxiety/OCD (her only remaining symptom), two years post-Lyme/Bartonella/MycoP treatment.

 

Hi, Can anyone with a child dx'd with Lyme,PANS and motor tics share their story or tell me how long in treatment before tics subsided? I've been treating DS since March.

 

Thanks

Edited June 2, 2012 by NancyD

[rowingmom]

DD10 started treatment for lyme (bactrim/biaxin/supplements) in May 2011, and added rifampin for bartonella in July 2011. Her motor/vocal tics had declined to almost non-existant after a month on rifampin. Our LLMD discontinued rifampin in Oct 2011 and tried to cover bart with herbals, but all DD's bart symptoms had returned (including motor/vocal tics) by Jan 2012. Two weeks after re-introducing rifampin in Jan 2012 tics had again resolved. When we started pulsing tindamax in the beginning of May DD's tics would increase on the "on" days and resolve a couple of days afterwards (looked like a herx). These cycles have flattened out now (after a month) and we do not see any more ramping of symptoms. Her OCD (quite minor - drawing stick figures over and over) seems to wax and wane with her tics. When she is having problems with ticcing she also has trouble with OCD and Aspergerish symptoms - inability to figure out social cues or nuances of speech, rage etc.

[hugs2day]

my oldest son is similar to yours has PAndas/PANS and lyme with main symptoms of tics vocal & motor. The tics went away after switching from Azithro to Penn VK (so did the horrible intrusive thoughts **ugh). The tics only (no ocd) came back 3 months later with loss of a tooth. Then we added omnicef and they subsided in about a week. Then tics came back with sinus infection recently I added xclear saline nose spray and sach b in addition to the daily custom probiotics he was taking. He seems to have gut issues now too. I have come to the conclusion he is PANS and is triggered by inflammation, virus, and bacteria. PANDAS dr. wants us to try steroid burst but we just added the omnicef again to the PENN VK so I am giving that a chance now. My main focus is too clean up his gut per llmd.

 

He is able to go into remission for months at a time when healthy. I am starting some new supplements with him trying to build the immune system.

 

Are there any other health issues lingering around that need to be addressed like the gut? I was overlooking that piece. Good luck.

[lismom]

My son 15 is now at 95% for tics. This after a year of lyme/bart treatment. They have diminished most after we have treated for the cyst form. He has been on daily cyst busting for 2 months. Before that it was pulsed and low dose. I think all those years treating PANDAS with zith made it turn to cyst form. LLMD says if you don't get the cysts there will be no resolution to this. I can finally see many improvements.

[socalmom]

Thanks, I do think the gut is an issue with all these kids, there's a second brain in there and it's clearly impacted.

 

As for controlling inflammation I try with diet what else is there?

 

 

 

We did IVIG, DS lost all OCD , The tics are a killer, it's heartbreaking to look at.

 

I think detoxing is an issue, with him as well as me.

 

Any suggestions for adding to detox protocol?

 

We already do MILA, PGX, and magnesium baths.

[socalmom]

my oldest son is similar to yours has PAndas/PANS and lyme with main symptoms of tics vocal & motor. The tics went away after switching from Azithro to Penn VK (so did the horrible intrusive thoughts **ugh). The tics only (no ocd) came back 3 months later with loss of a tooth. Then we added omnicef and they subsided in about a week. Then tics came back with sinus infection recently I added xclear saline nose spray and sach b in addition to the daily custom probiotics he was taking. He seems to have gut issues now too. I have come to the conclusion he is PANS and is triggered by inflammation, virus, and bacteria. PANDAS dr. wants us to try steroid burst but we just added the omnicef again to the PENN VK so I am giving that a chance now. My main focus is too clean up his gut per llmd.

 

He is able to go into remission for months at a time when healthy. I am starting some new supplements with him trying to build the immune system.

 

Are there any other health issues lingering around that need to be addressed like the gut? I was overlooking that piece. Good luck.

 

I thought steroids are a no no for Lyme? We did a steroid burst before DS was dxd w/ Lyme.

Edited June 3, 2012 by socalmom