rick--think that drug may be "ibogaine"--I just posted about an MJF funded study on "cogane"--wonder if it is the metabolite of ibogaine which is reputed to have no hallucinogenic activity.

lots of good commentary here. I do think that consumers beginning to be able to share info among themselves and then start to try to make treatment decisions is a powerful and necessary agent - unfortunately it leaves us all floundering around without really proven reliable sources of information that would help us with these decisions - so right now, you have to go to your own instincts about whose words or experience speaks to you...but I think this trend of the medical consumer speaking up for him or herself, and saying to their doctor, this is the information I have, and this is what I want to do with it, now how can you help? - is a whole new thing, and may be part of trend of real change.

Re: the hallucinations or whatever you want to term them that accompany ibogaine - I think I've said it before but here I go again - why do we somehow accept the possibility of the side effect of hallucinations in many FDA approved medications (I hallucinated for three weeks on Fentanyl and Oxycodone in the hospital and believe me, these were neither visionary or revelatory, but everyone saw them as an unavoidable side effect), none of which medications are curative, but in the case of something like Ibogaine which could actually represent a cure possibly, they seem unacceptable. Hell, people hallucinate on cocktails at the bar every night and they're quite legal without a prescription.

In the traditional use of ibogaine, the 'hallucinations' are part of a necessary visionary process of self-examination which accompanies the confrontation of an illness and an essential part of the healing. Now I know we don't really have a mainstream format for that kind of thing in our society. But the whole thing about something as powerful as ibogaine is that it works on multireceptor sites, and in ways again perhaps not reduceable to the action of a single chemical. And it seems that Parkinson's is a complex and mysterious enough ailment to warrant a possibly more complex solution than a single missing vitamin or whatever...and also that some kind of psychological component to the treatment could be of great value. A rad idea, I know, but maybe we need rad.....

Fiona, could not agree more. My concern about hallucinations is that mainstream medicine will eschew its use based upon this side effect--the adverse effects of compulsive gambling, sexual addictions, etc from dopamine agonists are "acceptable" side effects because of the medical model of "risk/benefit" for the greater good--and dopamine agonists are a pharmaceutical product with all the physician detailing, DTC advertising, $$$, and , from their designed trials and statistical analyses, positive clinical trials behind them. Obviously the adverse effects do not occur in 100% of patients taking dopamine agonists.
Following excerpted for the book "Ibogaine, Proceedings of the First International Conference" edited by Kenneth R. Alper and Stanley D. Glick, London, San Diego, San Francisco: Academic Press, 2001:
"March 1995: The NIDA Ibogaine Review Meeeting is held in Rockville, Md, chaired by the MDD Deputy Director, Dr. Frank Vocci. The possibility of NIDA funding a human trial of the efficacy of ibogaine is considered. Opinions of representatives of the pharmaceutical industry are mostly critical, and are a significant influence in the decision not to fund the trial. NIDA ends its ibogaine project, but it does continue to support some preclinical research on iboga alkaloids."
I continue to be interested in the supplement, Cogane, manufactured by Phytopham in the UK. MJF has funded clinical trials to determine safety and efficacy of the supplement. Would really like to know if Phase 2 clinical trials have begun. The description of the supplement is very similar to the description of "ibogaine".

http://www.michaeljfox.org/research_...s_3.cfm?ID=392

Effects of PYM50028 in Reversing Dopaminergic Neuronal Degeneration and Behavioral Impairments in Parkinson’s Disease
Therapeutics Development Initiative -- Industry Track 2007

Objective/Rationale:

The objective of this project is to assess the effects of oral administration of Cogane™ in reversing the changes in the area of the brain involved in Parkinson’s disease and the associated movement disability using two pre-clinical models. In addition, this project will establish the therapeutic dose levels and duration of treatment that provide these benefits in these models to gain essential information on the appropriate dosing and design for a Phase II clinical study in Parkinson’s disease patients.

I will email MJF staff again with the question of status of this study and if the supplement is related to ibogaine.
thanks again for your perspective, madelyn

Deborah Mash has a clinic in St. Kitts for drug addicts and the treatment is ibogaine (this I read yesterday, could be old news, maybe she doesn't even have it anymore but I doubt it)...the cost is less than one would expect, I remember the sum of $10,000.00 which is peanuts compared to the $$$ we shell out on drugs, doctors visits, supplements, etc. I think others have similar clinics in other places.

Does anyone think they would let a parkie in there to try ibogaine? What could it hurt, compared to how so many feel already? Now THAT would be interesting...talk about a white rat!

I have read there are ibogaine clinics in Mexico, Spain (barcelona) and Belgium, as well as the caribbean islands. I wonder if someone with PD has not been treated for addiction with ibogaine? would be interesting info if one had access to people who run these clinics. given the incidence of PD in the population, maybe someone with PD has availed themselves of the therapy for treatment of alcoholism or addiction.

Hi everyone - I am so into this, and have a couple of contacts in the "ibogaine world," but am in the countryside right now away from consistent internet contact - will write back in a day or so.....