LDN

[Kimflow]

We see doc. on Monday. One of the things I will ask about is LDN.

 

Would you all share your experiences with LDN with regard to PANDAS/LYME? Do you find the pill or cream better for your situation and why? At what time do you give and what dose did you start at and end at? Were there any side effects initially? What were your positives?

 

Thanks.

Edited July 22, 2012 by Kimflow

[mdmom]

LLMD started my DS14 on LDN early into Lyme and co-infection treatment. Started with liquid and worked up slowly (every 3 days increased .5 mg) to the max dose of 4.5 mg. I did not see any negative side effects. LDN is immune-boosting and immune-modulating, I believe. My son takes it at bedtime around 9:30 each night.

 

I also take it and it the only effect I have felt is that I am sleeping better. I take it at bedtime as well. Dosage is indicated between 9pm and midnight. I also took the liquid at first (it tastes really bad) and worked up to the 4.5 mg dose. Now I take a capsule.

 

It has to be compounded so we order from a compounding pharmacy and have it shipped.

 

Hope this helps.