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Anyone have any experience with either Notatum or Naltrexone???? We've started both.... I think the Notatum caused dd's flare to worsen, and may be seeng a "shift" in her with Naltrexone but its too soon to tell.... I'd never heard of either before, so I'd love some feedback :)

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DD had been on low dose naltrexone for 10 months. Saw improvement in her depression within a few days and in her sensory struggles within a week. We started at 2.5 mg and then moved up to 4 mg. I stopped it over the summer, thinking it wasn't helping anymore, but added it back about 2 months later. There is too much going on with her immune system and I think the LDN helps bring things down a notch.

 

Here's a good article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

you can find additional info at http://www.lowdosenaltrexone.org/

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Thanks llm :) somehow I was counting on you to respond! Did you start Naltrexone on our doc-in-common's recommendation? I haven't had a chance to research it yet, so thanks for the links. Dd has had 3 doses so far, and while I hate to say it out loud, I can almost say that I think I may be seeing a "shift" in her. She had circumstances this morning that (given her condition over the past week) should've set her off, but she was fine. Seems and looks tired, but is agreeable... So far. Can't wait to learn more.

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Yes, thru our common dr. I think you can believe in the changes you're seeing. LDN really does help. It hasn't been a cure-all, but definitely supportive and definitely something we'll be keeping on board until DD has come thru the other side of this illness. What's the notatum supposed to do?

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