chubbermommy

So non PANS psychiatrist recommended 25mg Zoloft for ds' OCD. Currently treating (or trying to treat) Lyme with abx and supps but would be nice to take the edge off the OCD if possible. I realize it may muddy the waters as to what is working but I owe it to ds to let him try. Hopefully won't regret it. So I believe Dr Swedo or Murphy said 1/10th or 1/4 of a regular dose is a good starting point for pandas/pans kids? Can someone verify?

Does anyone know what dosing of minocycline was used in this study? I can't seem to find?

There is a PANDAS/PANS Ontario Support group on Facebook. We're quite active so please join.

I've communicated with another parent who spoke with Dr. Brill (a psychiatrist) who told her she was no longer interested in PANDAS. The only MD I know of in Ontario treating PANDAS/PANS is Dr. E in Chatham.

Hi there. We are also in Canada! And trying LDI with our ND. I wonder if I know you from Facebook (are you on the PANDAS Ontario group by any chance)? Please PM me to let me know. So far we haven't had much success yet, but I am committed to trying it for 6 months.

rowingmom, the knotweed is also an anti-microbial, so would it not also produce a herx reaction? I've been tempted to try it for inflammation based on your (and others) good experiences with it, but my son is so sensitive, he'd probably herx on it.

cara615, are you still doing the CBD oil? Am I glad I found this thread. I was also told it would take 4-5 days to see an effect and after I gave my son a drop this morning (bigger than I had intended but it's hard to squeeze out), I was pretty sure his tics increased this afternoon. Glad to know I'm not going crazy. I'll need to figure out a way to get a smaller portion out.

How does it taste? Bitter? Grassy? Weedy ?

It's been a few months since this thread was last posted to. I was wondering if those of you using CBD oil are still using it? And how's it going? Doing my research. It seems CBD is like a magic oil, it helps Lyme, PANDAS/PANS, other autoimmune, anti-inflammatory, etc etc etc....

mayzoo, you are still using it and finding it helpful? Have you had to increase dose? Thank you!

Instead of starting a new thread, I found this older one. Just wanted to ask, how do you know how much CBD is in whatever you are giving? The RSHO says a % of CBD on the syringe but I can't find the amount of CBD in the other ones, like Bluebird, Cibdex, etc.

rowingmom, when your weaned your daughter to herbals, did you decrease abx one by one, or decrease dosages of each one? And from your signature, I gather that she is still on some of the babesia herbals for maintenance? Thanks!

Those who are using LDI for infections, are you seeing any flare up of symptoms? My ND and I just recently discussed this and she will be offering it to her Lyme patients. I'm still doing a lot of reading about it before I decide whether DS should have this treatment.

I'm glad to hear it's working so well for your daughter. I have 500mg capsules which I'll have to break open anyway. My son tends to be very sensitive so I will start at a low dose and make sure he doesn't have any adverse effects. I have read some of Dr. Hoffer's writings online, and it seems niacin/niacinamide is good for many of my son's symptoms - slight anxiety, a bit of OCD, hypersensitivity, and of course, really bad tics. So I'm going to try it tomorrow and fingers crossed something good happens.

Thanks for posting about this. I have been thinking about trying it, as DS' tics are not getting any better. How are things going now?