How many of you have tried Acetylcholine boosters or Acetylcholinester

[trggirl]

Oops, my title did not print fully. How many have tried Acetylcholine boosters or Acetylcholinesterace inhibitors? I would love to hear any experiences with these drugs if you have them.

Edited June 17, 2011 by Trg girl

[peglem]

We used CLO and bethanechol years before we knew PANDAS. Initially, we see a very prominent increase in awareness and ability to communicate(is even able to say a few words), better sleep, better appetite, better mood, improved fine motor. But, the improvement is not sustained.

Edited June 17, 2011 by peglem

[trggirl]

That's interesting Peg. I wonder why it wasn't sustained?

[peglem]

That's interesting Peg. I wonder why it wasn't sustained?

Me too. We went on and off twice. Both times going on we got the nice improvements for awhile. Going off, not much difference, but went off during rough times, to see if the bethanechol was contributory. I'm thinking of trying to go back on to see if we get the improvements. She has mostly stayed on the CLO, and I do notice a downward difference when she doesn't get that. I wonder if the Bethanechol just unblocks something initially and its the unblocking that triggers improvement.

[trggirl]

What is CLO?

[peglem]

What is CLO?

Cod liver oil. You're supposed to prime the system with it before adding bethanechol- that's according to Dr. Megson's paper on it.

http://www.megson.com/readings/MedicalHypothesis.pdf

Edited June 17, 2011 by peglem

[trggirl]

Ok, thanks!!! I thought that was what you meant but I was getting confused with how it related to Acetylcholine. Thanks for the link too! I don't think I have seen that one before.