Thanks so much for the update. I just don't understand healthcare. I talked to my family doctor about it and she just looked horrified. I know she would never have prescribed it for me. It's crazy that you were sent back to family med again. They should have known family med couldn't/wouldn't prescribe it. What a waste of money.

That's ridiculous. I'm sorry it was a waste of time and money.

My neuro actually recommended lose dose naltrexone as he was taking it himself for a medical condition and realized its possible benefits for his patients. I was to await a call from the compounding pharmacy as he had to send them the prescription first. 6 weeks went by and never got a call. At my 6 week recheck with neuro he asks how the naltrexone was and he looked like he was expecting happy response. I shrugged and said no one ever called me. That was the track record at that office, the staff "NEVER" followed up on anything, absolutely nothing. No follow-up ever.

So I had the opposite problem that you have. A doc willing, but lousy staff. You can only get LDN thru a compounding pharmacy so the doc would have to send the script to them first and then take it from there. There aren't that many compounding pharmacies so the choices are few.

I hope you find a doc open for alternative treatsments like LDN. My neuro was a neuro DO I think, one who believes in natural supplements/alternatives not just he pain meds etc. so you might want to go that route and ask in advance if the doc believes in LDN. Hope this helps

Thanks for the report on the LDN as I had just read about it a couple of weeks ago and was going to make appt with my GP specifically to get that. Had no idea it was contraversial or had to be compounded so appreciate the heads up. So sorry you had to go through the energy and expense to get nowhere with it. How odd Mayo agreed with it but won't prescribe it. There seems to be no limit to the systems absurdity.

A member of the CFS group by the name of dbergstrom was taking LDN, so maybe he can suggest how to get hold of it. If I remember rightly he also has medical practitioners in his family. He was getting good results with it. He doesn't seem to be very active on DS anymore but you could try to contact him. I was offered LDN by my doctor but didn't end up trying it. There is a compounding pharmacist right next door to her clinic. I'm no help though to you as I'm in Australia. Good luck. I hope you get hold of David as he is in your country.

I take ldn and it is made by a compounding pharmacy. I see an integrative medical doctor (regular md who is also trained in natural medicine). I know there is a ldn site that you may be able to get more information from. I believe it's called LDN trust. They may be able to help you find a doctor who prescribes it. My cost is only $25 with delivery for one month. The LDN is one part of my regimen, along with a paleo diet, medicinal cannabis, Sam E, vitamin D-3, Aqua Therapy, Heat therapy etc. The ldn along with my entire regimen have been a lifesaver for me. I used to come on her pretty regularly, but haven't been here in a while. Best Wishes.

https://www.ldnresearchtrust.org

This is the website I was referring to.

Hello! It has been a year since I have been on here. Shame on me! It seems I come here when I have hit a wall. On the bright side I have been on low dose naltrexone for a year and it has been a lifesaver. Takes the edge off enough that I can function and work at least part time. A true blessing. Had to go out of net work but well worth being persistant. Now my struggle has been with debilitating migraines. Trying botox so far not going well. Just needed a little pity party and a good cry. I'm glad you are all still here! Gentle hugs!