LDN

[Kimflow]

Posted this also on PANDAS board.

 

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.

[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.

[mama2alex]

My ds, 80lbs, takes LDN 1mg (pill form from Koshland Pharm) at bedtime (btwen 8:30 and 9:30). We had no negative side effects. He is sleeping through the night, but I'm not sure if that's from the LDN or not. It's possible it has helped his asthma - he was taken off his controller (steroid) med in April because his lungs were doing so well - but again, not sure. I'm keeping him on it just in case its helping his immune system, and am going to ask whether he should be on a higher dose for his weight. Good luck - hope it helps your child!