Is anybody on Naltrexone? How is it working out?

[MichaelOM]

[MichaelOM]

... Guess not!

[Moderator_1]

Michael this is any interesting question and one I have flagged for further discussion sometime. Can I ask what prompted you to post this question. Have you had experience of this medication?

[MichaelOM]

No. A woman on a dating site post-scripted about it (after she rejected me). Sounded like a cure-all for a lot of things. I'll paste her comments here in another post. I just wanted more info before I ask with my neurologist. Thanks for asking.

[Moderator_1]

Michael

You will be referring to Low Dose Naltrexone - if you google search that you may get more useful information.

[MichaelOM]

Thank you moderator. Here is that woman's email ...

... after reading your profile I couldn't help but contact you about a little known medication that may be helpful to you. I have had some health challenges myself (not Parkinson's, but an immune-related disease) and once I started taking Low Dose Naltrexone (LDN) my life had completely changed.

Naltrexone originally was created to fight opiate addiction. At 80 mgs it completely blocks the endorphin receptors that opiates lock into. Some researchers from Penn State in the 1980's found that low dosages of this drug (4.5mgs) only block the receptors for a few hours and the body responds by producing more endorphins and more receptors. Once the drug wears off, the body has a flood of endorphins. I didn't realize this until I started researching LDN, but endorphins play a key role in immune system regulation. LDN has been helping people with Parkinsons, MS, RA, Fibrmyalgia, CFS, and, because the met enkephalin endorphins regulate cell growth, cancers. The anecdotal evidence is overwhelming.

So why might you not have heard of this, you ask? By the time this off-label use of this drug was discovered, the drug had become generic. There has been no profit motive for drug companies to fund clinical trials. Without clinical trials doctors are loathe to prescribe anything. There have been a few trials--Stanford did one for fibromyalgia and found it to be effective, Penn State did one for Chrohn's and found it to be effective. Other trials are underway. But in any case I have read the testimonials in LDN forums of Parkinsons patients who have been helped significantly. At the very least it keeps the symptoms from getting worse.

Side effects? Vivid dreams sometimes and sometimes trouble sleeping at first. That's it. I had neither.

Drug interactions? None except for opiates. You can take it with your present regime most probably---if your doctor has an open mind or if you have the will enough to make your own decisions about your health.

Cost? It's generic but must be compounded into the smaller dose. It costs me about $35/month including shipping.

It took my pain down from an 8 to a zero. I can think again. I have energy again. I can exercise again. So I am LDN's biggest cheerleader and I want to spread the word. Take a look at these websites and see if what they say make sense to you. lowdosenaltrexone.org ldnscience.org

Please feel free to contact me through Match if you have questions or need to find a doctor who is willing to prescribe it.

[windwsprer in reply to MichaelOM]

Any in central Florida? (I'll see if I can find a listing.) It would be nice to be clear headed. I can't wake up. This year I have forgotten the memory of alertness. Had a complete meltdown. Happened to see my neurologist during this time and he was totally flummoxed at my reaction to such a small (?!) problem. He recommended a psychiatrist - in the nicest way. Next time I'll ask him for a test of my endogenous blood opiates levels. Wonder how that will fly?

[maryalice]

MichaelOM

I have been researching LDN, Low Dose Naltrexone , on the internet. Just google Low Dose Naltrexone - Parkinson's, and you will find a wealth of information. it sounds very promising! I'm trying to get some testimonies as well as scientific information together for my doctor. That is how I came across

your question about LDN.

I hope to get a prescription and start taking it by next week. I'll let you know how it works out for me.

Blessinngs,

Maryalice

[windwsprer]

Thanks so much for bringing this back to my attention (such as it is) I tried to talk my new doctor over 10 years ago (prior to PK diagnosis) into this as I was suffering from unbearable pain (the gun is with me) that relented to a bearable level after 3 days of intensity (the gun is in the drawer) but life was still not worth living - tho life is very persistent. He turned around from his computer and said, "Oh, I've got a reader! He then asked for my whole story (Bless you Dr. B) and listened for about 40 minutes. He then said I had problems for too long (50 years to one extent or the other) and didn't think it would work for me. I would have liked to try it. Please keep us updated as this may be a boon for those of us with fibromyalgia, ME/CFS, and Parkinson's.

Maybe it's not too late. I'd love to go out of this life with a few years of feeling comfortable in my body