-I can never get these links to work so I'm afraid that you might have to paste it!-
It sounds as though this could be of real benefit to a wide range of conditions- particularly MS. Not sure if it can help with Lyme, I think it can help with a lot of the symptoms but from what I've read it doesn't sort the underlying cause.
It'd be great if anyone has any experiences of it to add to this.
Posts: 229 | From United Kingdom | Registered: Jul 2005
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posted
I took it for a little over a year and just got thru tapering down and off completely. I was primarily hoping for improved speep but I could never see that I got anything of value, at least that I noticed, from it.
After a year I finally had to give in and take a sleeping pill, Lunesta and it does put me to sleep and most often gives me 6 hrs but I still wake exhausted.
I havnt noticed any changes since stopping but then its only been about a week. I did slowly ramp down over a few weeks.
Its such a low dose I thought it was pretty safe to try and hoped for the best but I have to saw it was like everything else - zero
Posts: 561 | From connecticut | Registered: May 2004
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I have been taking it for over 2 years. It totally stopped the progression of my MS sx for 8 months. Then it started progressing again. My friend in a similar situation has been taking it for a long time. For her it slowed the pregression. She didn't think it was helping and went off it and 3 weeks later started progressing rapidly. She went back on it.
Then someone wrote to her and said she noticed that those who continued to progress were later dxed with lyme. So we both got tested and were strongly positive. We are both in LD tx. Both continuing to take it. She feels it helps the immune sys and quite a few people she knows stay on it with the abx.
I am afraid to stop at this point. Perhaps when the abx start helping, I will taper off.
There was recently a conference on LDN and it was extremely informative. I'm sure you can Google it. Let me know how you do in a few weeks. Is your lyme tx working well?
Posts: 830 | From Colorado | Registered: Mar 2005
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Hi Sofy and Aliyalex, Thanks for your replies. If I start taking this will I be able to get off it- when you stopped, were your symptoms worse than they were before you started taking it? From the website info it sounds like a pretty amazing drug.
Posts: 229 | From United Kingdom | Registered: Jul 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
milly,
I was on it for 2 years...started to get "worse" but with pain, swelling, ortho problems. Found out lyme induced MS. I couldn't take it with the abxs. Got sick about an hour after taking the LDN- nauseous, light headed, felt faint. I just don't tolerate when on the abx.
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