Info on naltrexone

[randrk]

Hi. My name is Rand. I posted most of this under “new guy”. I would like to hear from anyone about their experiences with Low Dose Naltrexone.

I was officially diagnosed with PPMS in 2008. A month ago I was so weak and fatigued I was sure I would be in a wheelchair in a matter of weeks. While surfing the net, without hope, I found Naltrexone, researched it, and have been taking it since Aug 31.

After three weeks, and a beer, I walked a block, bought an ice cream and sat for 15 min, then walked four blocks home, with a one min rest after three blocks. And the next day I wasn’t sore or stiff from the exercise.
Since then, I have the occasional mild forehead fever, still get stiff muscles, but they’re stronger. I have been having trouble sleeping, but that may be because of my environment (two teenage sons). I can now work physically for a couple of hours a day, now and again, which I haven’t done for a couple of months.

The regime I’m following now includes;
Modafinel – Two in the morning (down from three, started six months ago)
Famphyra – Two a day, 12 hours apart, for walking and balance
MM and ibuprofen for pain
Naltrexone – 2 ml morning and night
I also use an electrical muscle stimulator (EMS), about the size of a transistor radio, most days, to exercise different muscles. I'm on a healthy diet and beginning an exercise program. I began physiotherapy three years ago, once every two weeks, last year, once a week, and now twice a week for massage and adjustments.

Anecdotal evidence suggests progression could stop for some people with LDN, and if that happens and this is as good as it gets, I’d be fine with that. I’m working on increasing muscle mass and if I do, so much the better.

In the meantime, please respond with your thoughts about LDN.

[GinnyRuth]

I am very glad this is helping you. All I know about it is that no doctor I have asked about it is willing to prescribe it.

You might want to do a search on here because I am pretty sure there are other threads on it.

[Seasha]

You might want to do a search on here because I am pretty sure there are other threads on it.

Here is the stickied thread about LDN in case you haven't seen it. http://www.msworld.org/forum/showthr...DN-Information

So glad to hear you've found a good combo of meds to help you, especially the ldn. My doctor nor my naturopath will prescribe it for me. I need to keep searching around to find someone who will. I've heard good things about it!

[JerryD]

I was diagnosed with PPMS, in 2009. I took LDN 4.5 mgsfor at least 5 years. I think it helped my balance and sleep, but my neurologist saw a drop in my blood counts and suggested that I discontinue the LDN. I feel ok now but I think my balance has suffered. I don't know if I am doing the right thing . Hope you continue to have good luck with this drug.

[GinnyRuth]

It is so hard to know what to do. Did your blood counts improve after you stopped taking LDN? Maybe you could try going back on it?

I was diagnosed with PPMS, in 2009. I took LDN 4.5 mgsfor at least 5 years. I think it helped my balance and sleep, but my neurologist saw a drop in my blood counts and suggested that I discontinue the LDN. I feel ok now but I think my balance has suffered. I don't know if I am doing the right thing . Hope you continue to have good luck with this drug.

[perkylady]

I congratulate you and want to encourage you, Rand, in your pursuit of health. If you don’t mind, I will quote Jayne Crocker a LDN advocate in the UK,

“The benefit fromtaking LDN comes from the ‘rebound effect’. For those of us wishing tostop/slow down the progression of our diseases, it is important for us to understand this. The ‘rebound effect’ is what happens when the drug you have taken clears your system providing you with the benefits of its actions. So in the case of LDN, all the good things start to happen when LDN is no longer blocking the receptor sites but allows the upregulation of the yourbody’s own natural supply of endorphins/enkephalins to interact with the receptors. Specifically the enkephalin known as OGF (Opioid Growth Factor)and its receptor (OGFr).”

Here is a link you may already have on how LDN works, http://www.sciencedaily.com/releases/2011/09/110902133047.htm

I know several people with MS who are using LDN successfully. The most common MS dose, I believe, is 3 mg. But many take 4.5mg and have become almost religious about that dosage. However, there appear to be sound scientific reasons why 3 mg might be better. But it can become anargument so I usually avoid the subject among the entrenched and offer the opinion to the open-minded. I have spoken with notable LDN researchers and believe there is a basis for my opinion.

3mg for a nightly dose is common but there are differences among people. Some people are extremely sensitive and may require far less; some may require more than 3mg. I have not heard of taking 2mg twice per day. I don’t believe there is much to be found in scientific lit regarding taking LDN twice per day so I might suggest experimenting with once a day before bedtime, if you like.

I don’t post often so please allow my rudeness if I don’t respond to queries, won’t you? I just wanted to encourage you because for some people LDN works well in improving QOL, slowing MS progression and improving over-all health. I have a firm conviction in believing that.

Last opinion, it is unlikely that LDN would influence blood count significantly, I find no evidence in literature to that effect. Remember, it isn’t naltrexone full strength, it is low dose naltrexone. That makes a huge, huge difference. Doctors often react to naltrexone without knowing or realizing that LDN acts just the opposite of full strength naltrexone. If you have studied LDN briefly you already know more about it than most doctors, if they haven’t looked at it at all.

[randrk]

I was diagnosed with PPMS, in 2009. I took LDN 4.5 mgsfor at least 5 years. I think it helped my balance and sleep, but my neurologist saw a drop in my blood counts and suggested that I discontinue the LDN. I feel ok now but I think my balance has suffered. I don't know if I am doing the right thing . Hope you continue to have good luck with this drug.

I'm no authority but sometimes "less is more". Give some thought to trying a lower dose, say 2.5, and see if there is any improvement.

[Mamabug]

Following.