EAMom Posted October 18, 2017 Report Share Posted October 18, 2017 Hi, I'm interested in learning more about Low Dose Naltrexone. Please comment if you have any information or experiences! Thank you! Link to comment Share on other sites More sharing options...
Eliself Posted October 19, 2017 Report Share Posted October 19, 2017 LDN caused a severe flare/reaction for me, and I actually ended up in the ER. I was using the topical cream. The day after stopping it I was 1000 times better. Link to comment Share on other sites More sharing options...
EAMom Posted October 19, 2017 Author Report Share Posted October 19, 2017 Hi Eliself, Do you know what dose you were giving? Did the flare happen immediately after the dose? Was this for you or your child? Link to comment Share on other sites More sharing options...
bobh Posted October 19, 2017 Report Share Posted October 19, 2017 We tried a pill form for our PANS son a couple of years back, but we did not seem to see an effect one way or the other. Try searching "low dose naltrexone" or LDN in the search dialogue box at top right. Be sure you are in this forum, and it says "in this forum" to the left as you start typing in that dialogue box. Link to comment Share on other sites More sharing options...
NancyD Posted October 20, 2017 Report Share Posted October 20, 2017 Hi EAMom, My DD21 has been on LDN for almost a year. We started at .5 mg nightly and slowly built up (over the course of many months) to 4.5 mg, then backed down to 4 mg. It has helped with sleep, OCD, and mood dysregulation. We originally started it because she was trying to do Low Dose Immunotherapy (LDI) for Lyme, strep, mold, and autologous but her body reacted negatively to the most diluted doses. We had two amazing weeks from LDI autologous, which we repeated a few times but we could not get any improvement over that. So after being on LDN for almost a year we are about to restart LDI autologous to see how it works now. From what I have heard from others, LDN works better if you are gluten and dairy free. Not sure why, but I'm guessing that would be true even if you were not taking LDN since gluten and dairy can cause inflammation. I have not seen any research about this. You need to get it compounded by a good compounding pharmacy. The cost is not that bad, depending on the pharmacy, especially is you buy 3 months at a time. I am not on this forum often so if you have any questions it may be best to PM me. Best, Nancy Link to comment Share on other sites More sharing options...
4Nikki Posted October 28, 2017 Report Share Posted October 28, 2017 DD used it for about 6 months from her pandas, it didn't appear to have any positive affect. DD's neurologist said it was useless for her and had us drop it. Link to comment Share on other sites More sharing options...
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