My experiences with specific concerns addressed in this thread (sorry so random and LONG just wrote them down as I read them):

Now I know why I am cutting my hair and nails so often! You learn something new everyday...

I have not had a problem when I have had a drink or a few while on LDN.

My best friend is on a higher dose (25mg) for PTSD and she also takes Ambien without issues. My PTSD flashbacks have improved significantly even on such a low dose.

I have not taken any opiates since being on it, so I can't say what would happen there. However I do have a friend who had surgery on LDN. She stopped 72 hours prior to surgery, but she still required twice the usual dose of one of the opiate based drugs. She also happens to be a nurse so she was very on top of the whole situation. She had no issues with after the surgery pain meds.

LDN can also enhance physical pain, making it stronger than normal. I have absolutely noticed this with my situation. My best friend also has at 25mg.

There is anesthesia that can be used that are not opiate based. It is what they use on me anyway because Versed does not work.

With a surgery the only issue is the pain meds. Trying to find pain meds that are not opiate based after major surgery like a hysterectomy... is not fun. When you tell a doctor you would rather not have pain meds and keep your LDN... they look at you like you need anti psychotics more than anything else.

One idea for finding a doctor who prescribes LDN is to call your pharmacy. Ask them if they have compounded LDN in low doses and if they have, ask them what doctor's those prescriptions came from.

If that doesn't work, there is a doctor who gives prescriptions for it over the phone. He does it for MS, depression, chronic fatigue, etc. He requires documentation of course but will prescribe it and do all dosage adjustments for a year. It costs $200. LDN is generally very cheap to get since it's an older drug, I wouldn't even worry about insurance covering it.

Dr Ayre's website is here is anyone needs it: http://contemporarymedicine.net/ I emailed info@contemporarymedicine.net and got his daughter. She was extremely helpful and kind.


My story:

I was diagnosed in June 2007 after 5 years of symptoms. I later found out I had an MRI with lesions in 2004 that I had been told was normal. So I had MS for at least 3 years before being diagnosed. I had 2 babies in 2003.

When I started LDN (quite reluctantly) I was using a cane most of the time and a wheelchair for outings like the zoo. I was in constant pain. I needed Neurotin as well as a muscle relaxant and was considering other meds (bladder spasms, esophageal spasms, etc.) I wanted an option that I could afford to purchase by myself in case health insurance wasn't available. This is what ultimately convinced me to try LDN, it was cost effective and safe.

I started at 1mg and worked up very quickly to 4mg. (2 weeks at the most, I had no effects from moving up quickly and patience has never been my strong point) I eventually settled on 4.5mg. Any higher than that and I have spasticity. I use liquid LDN (just crush the 50mg pill in 50ml of water) so it was easy for me to move up. I take my LDN around 11pm each night.

I have been on it for almost 9 months now. I haven't even SEEN my cane in 8 months. I take Neurontin very rarely (30 pills in 6 months) when I really need it. The only other med I am on is Wellbutrin.

My spasms, burning pain and numbness have essentially vanished. I have my bad days (like when I have to see the in laws, I'm sure my blood pressure doubles then too) but other than that do very well. I missed one dose of my LDN while my daughter was in the hospital in July and I swore it would NEVER happen again. I was in so much pain it was awful.

I have nightmares and sleep issues, so I wouldn't have noticed those as side effects. I noticed occasionally a headache right after taking it but I think it was coincidence. I also don't drink water, so that could have been it.

The LDN I humored a friend by trying has made my life 100% easier and less painful. The spasticity was a HUGE issue for me and the LDN has all but taken care of it.

My neurologist said if I came in now, he would never guess I had MS from my physical exam. He is very interested to see the results of my MRI on Tuesday. I haven't had one since I was diagnosed. He says he is sure that there is major improvement because of my neurological exam being so much closer to normal. He was amazed that I was the same patient.

I still can't tolerate the heat but I am happy to work around the temperature issues. It also has not helped my cognitive issues. I am exhausted still but that is likely other health issues.

There is no doubt in my mind that I would be in a wheelchair right now without LDN. Instead I have taken my girls to the zoo and the dinosaur park, places I never could have gone last year.