Erin,

I am a member of the Neurotalk Parkinson's forum. I offer the following information regardiing my experience concerning LDN in case others on this forum might be interested in exploring a possible alternative which does not require a physician's prescription.

Another member of the Parkinson's forum, AshleyK, reported that she was using LDN to attempt to ameliorate the progression of Parkinson's symptoms, since she had read on the LDN web page that some people were using it for that purpose, with positive results. She reported that LDN has apparently been effective in slowing her symptom progression.

A couple of years after I was diagnosed in 2001 at age 63, I did some literature research about naltrexone and related morphinan drugs. I discovered that Dr. J. S. Hong, a neuro-pharmacolagy scientist at the National Institutes of Environmental Health in North Carolina, who was studying inflammation in nervous tissues, discovered that, in addition to naltrexone at very low concentrations, dextromethorphan, a drug that is available over the counter in cough preparations, at the same low concentrations as naltrexone, was equally effective in suppressing inflammation in brain tissue cell cultures.

Because I wanted to try the LDN type of approach, but was reluctant to ask my neurologist to prescribe LDN, I decided to try low-dose dextromethorphan (LDDM) to slow my Parkinson's progression. In addition to my typical daily Parkinson's medications, I have been taking LDDM (1/2 tsp. of "Pedia Care Cough" containing 7.5 mg DM per tsp.,) every night for the past 6 years. The dosages of this pediatric preparation recommended for cough supression in children is 10-20 times higher that that.
During that time my symptom progression has been very slow, compared to that of other Parkinson's patients at comparable times after diagnosis.
Several other Parkinson's patients at early stages of the disease have also begun LDDM with good results. I have since shared my use of dextromethorphan with my neurologist, who continues to be delighted with my lack of significant progression.

I do not know whether or not dextromethorphan might be effective in modifying the progression of MS, but am aware that neuroinflammation is common to the progression of several neurodegenerative diseases including both MS and Parkinson's disease.

Although I am a scientist, trained in biochemistry and molecular biology, I am not a physician, and I want to be clear that I do not share this information as a recommendation for anyone else. It is only a case of self-experimentation which I have found safe and apparently effective in my own case.

Robert

Erin, did you ever call Skip's to see if they could recommend a doctor in your area who will prescribe?

Robert, I have read several of your posts over in the Parkinson's forum. A lot of what you address re: PD has come up in my research about MS.

No, I hadnt called them yet. Was waiting to see what the neuro said. I'll probably call them soon.

Would it be safe to assume that LDN and LDDM taken together would be a safe combo? I get spasticity if I take the largest recommended dosage of LDN so I have reduced mine to 3.0 mg each night. I wonder if I took that and the LDDM together I'd get a double benefit?

I would be hesitant to take both drugs at the same time since both are presumably interacting with the same receptors, and it is my understanding that the very low dose is critical for the effect. By taking both, one would probably be essentially doubling the concentration of drug, possibly defeating the "low dose" effect.
Robert

RLS, could you link us to information about this drug & MS on the internet? I've run into a fair bit about how it may be helpful for depression/emotional lability, but not much in the way of how it might be helpful for progression, or any anecdotal reports in that regard.

Thanks, Cherie

Hi Desinie,

In reading your post, I notice that you're going to an MS Specialist in a practice devoted only to MS. If I may ask, what part of Pennsylvania are you in? If you don't want to say here, please feel free to PM me. In this part of the state, Northeast, there don't seem to be any MS Specialists. Thanks for any info you can give me!

As far as I know, there are no other references to LDDM other than the posts that those of us on the Parkinson's forum have made. I have never seen it associated with MS treatment. I began using it on the strength of Dr. Hong's research in which its effect on animal models of Parkinson's, and the fact that it had identical effects with naltrexone, ie, suppression of inflammation in mouse midbrain tissues in culture.

I was dx with fibromyalgia many years ago, and had read tons of articles that dextro stuff was great in very low doses for the inflammatory response. I had forgotten all about it till it was just brought up here.

I also was told about guaifenesin. now I will have to look both of these up today. you got me wondering stuff. that could be dangerous to get me started.


I think I am gonna do some googling today.

Hi Judy,
I'm about a half hour from Reading. I see an MS Specialist at Penn State Hershey Medical Center , which is about an hour from me.