Consider the possible implications
 

There have been a number of weird reports about PD and the hunt for a cure. Amgen, of course. Years of insisting it was all about ldopa when it was known otherwise. Olanow's patent grab on mucuna that serves as a fine lid on further research. Olanow's resignation from a top position at the same time as the Mother Jones piece on the $3M received from the industry his research was supporting. And, as the "Death in Edmonds" thread revealed, a retraction of a paper that would be ludicrous were it not so sinister.

So what the heck is going on? Here is a theory for the more paranoid of you. You know who you are. Don't we? :D

PD is intimately connected to dopamine circuitry. That is, in turn, integral to the reward system of the brain. Sex. Gambling. Cocaine. All work through the reward system.

What if it is known that anything that fixes PD will also fix the damaged circuitry that causes people to engage in those other activities? We have pondered the huge sums we generate for BigPharma but that is a speck on the planet compared to those others. If that is true, we will never see a cure my friends.

Rick, as you know, I truly believe you're onto something - and it's not just cuz we're brain damaged or on drugs. (:cool:) Between Monsanto, General Foods, our own top neurology specialists, the insurers and the pharmaceutical companies - these alone - their methods are worse than bombs.

When I met with my own neurologist this week, I said to my doc and two other neurologists who were sitting in on the session, "No one is really working on a cure, are they?" My doctor said, "No. They're not. They're making too much money the way it is." With that, I gave him a hug and said well, I'm going to have to be taking care of myself pretty much then.....

Onward. Or underground. Or whatever. I intend to live and live better than they ever thought I could. He asked me to walk down the hall for them. I walked down the long hall and felt like I was on a runway...click-click, click-click, turned and looked back at their three small faces as the doctors stood there watching me. I walked back, perfectly, shrugged, and my doctor whispered to the others, "18 years.... " It feels really energizing to take the reigns of your own life, whenever you can, however you can....Nobody has a say over your own personal life energy.

Fiona and Rick, you are definitely in the thick of it now. I have been reading and truly appreciating yours and many others'
contributions. If you see it elsewhere don't be surprised. Rick, you are a strategist with your own style. It takes courage to say how you feel - but so few can for whatever reasons - of course I'm paranoid; but i'll just use it to agitiate and idealize. - is no one else....lol

Fiona - your article about the "deal" between some of the most successful researchers really made me kinda sick.

pipeline has some good summary and analysis coming about all canceled treatments. It may also make you kinda sick.

I think we might just be hearing more about these types of business deals, that I'm sure were thought to be well deserved and incredibly fortunate of them to be sought after.

So much to do....

paula

drug therapy
 

Use of Ibogaine/Ibocaine to increase GDNF in alcoholism ---and thus a BIG potential for PD could be included in this thread. The timeline in the text of a conference on Ibogaine I am currently reading includes the date the FDA determined further study on Ibocaine was useless--there is a note that there were several pharmaceutical executives who were at this meeting and "helped" the FDA reach this conclusion. Ibogaine is banned in the US and Britian--though used in Spain, Mexico, Belgium, and in many island countries for addiction. reputed to have cured Eric Clapton and Keith Richards of their addictions.

Parkinson's
 

Thank you for your information, I am not up on all of this. I'm newly diagnosed with PD - the only thing that worked for me was the Neupro patch, which they have recalled. Been trying different meds, nothing helps with tremors. I keep hoping the Michael J Fox's Foundation's funding will bring assistance/cure - unfortunately, I may not see in my life time, but hope my children will see a cure.

Sharon

Rick,

I came to this conclusion ages ago. There's no incentive for a cure if Big Pharma can keep the cash cow alive. They have way too much money/power so they can control any study and possible cure from ever making its way through the FDA. If anything, they'll find other uses for the same drugs so they can expand their profit base more, i.e. Mirapex and Requip for RLS, etc.

John

to add to the paranoia
 

I wrote a reply to Rick's this morning which had several points and it would not go through. I sent it again, and again, would not go through. There were no links to websites, no copyright issues, nothing, so my paranoia is making me think big brother or perhaps something else is keeping if from going through? Anyone ever had this happen, and if so, how did you resolve it?

If this post goes through, and my one from this morning didn't, then I'll REALLY be paranoid!

Where do those posts that won't go through get routed? Anyway to get it back from cyberspace?

slow browsers cause this. the page times out before it is posted.

make sure you clear your cache and your cookies often. closing other programs helps, so does not having too many windows open.

they just go poof. try typing a reply on a word document or notepad, then just copying and pasting if you keep having this problem.

when i was on dial up, this happened many times. very frustrating. i'm sorry it happened to you. pm me if you need any help.

third time's a charm...
 

and here's the gist of the first message I sent earlier, the one that got snagged, twice.

Not to be the nay-sayer, but I am not sure Rick is right. Although it does appear that big pharma has no interest in cures, inasmuch as I have not seen one in my lifetime, yet, and that is despite the millions, and billions, of research done, for cancer, AIDS, diabetes, fill in the blank with the "disease" (they even are drugging young children now and migrating them onto a drug-dependent regime for life, unconscionable). And no cure for anything, at least that I know of.

But there will have to be a cure. As more and more people move from being tax-payers to benefits-receivers because of disability (for PD, MS, AIDS, whatever) things will have to change, if only from a pure mathmatical standpoint. Our society is simply not sustainable unless the majority of people in it are paying ample taxes to support it. And I don't see those taxes going down anytime soon, if ever!

As for the point about a connection between a cure for PD and vice, we should keep in mind that the vast majority of gamblers in Vegas (and folks watching the porn in their hotel room) are not compulsive, in that they are able to stop themselves. Thankfully, the vast, vast majority of those same folks also do not have PD. There is much more involved with PD, as researchers are now finally acknowledging, and therefore I don't think a cure for addiction will necessarily equate with a cure for PD. Research from one may help shed insights into the other, but I don't see "one cure fits all" in this case, simply because of the complex nature of PD.

Besides, more and more people are turning away from traditional medicine in favor of alternative treatments that work better than the drugs, for them. Just look at this forum, where so many are trying alternatives, and this is only one forum, for one condition. There are many, many others where people are educating themselves (no doctor is going to do that!) and taking charge of their own health. Communities are seeking to DE-flouridate their water (the first town in the US to flouridate water is now considering taking it back out-big news up north), parents are no longer slathering their innocent kids with sunscreen, more parents are choosing to delay vaccinating their kids, or not vaccinate at all, in all aspects people are learning how to be healthy and AWAY from hospitals, doctors, and drugs. With more and more folks taking charge of their own health, that is bound to yield additional insights into how we all function, with and without PD.

And, my favorite thought in all of this: for every pill that someone passes up in favor of a non-Rx alternative, there goes several dollars off big pharma's bottom line. Think this is not making an increasingly significant difference to that bottom line? Even as I type this there is a strong movement to regulate the vitamin and supplement industry, just as the Rx industry is. Just think, clinical trials for Vitamin C! If you want to have to get a prescription so you can take mucuna, or milk thistle, or ginseng, don't bother contacting your congressman to let him/her know how outraged by this proposal you are. But I digress...

Then there's the greed, both a blessing and a curse (ever notice how "curse" is spelled the same as "cure" but without the "s"?). Just as we feel big pharma's insatiable greed drives it to find only treatments and not cures, milking those treatments until the patent expires, then finally repackaging the same old drug for "new" uses, there are scores of companies waiting in the wings to get in on all of that lucrative disease action. They are the ones coming up with the gene therapies, the DBS, and whatever else is in our future. They are highly competitive, focused in on the goal, and skilled enough to achieve it. We just have to stay as healthy as possible until they do.

I would love to see a charity, to be formed, the sole purpose of which is to pay for the expenses (hospital, travel, meals, lodging, etc.) of a parkie who is unable to pay for a treatment which would get him back on his feet. I fancy it would function like the Heifer organization (google it if you don't know), where someone who received its benefit would then, once he got on his feet again, contribute to the charity so that a fellow parkie could be helped. This would be particularly appropriate if there were a treatment (in or outside the US) that was not approved by the FDA or covered by insurance (for those lucky enough to have it) or medicare/medicaide. This would free parkies from the limitations of only FDA/insurance-approved treatments, and if the charity were big enough, it would encourage researchers to look for solutions outside the confines of the "FDA approved only" box. And, for every person who got back on their feet, and off the meds, that would be one less person sustaining Big Pharma, and as more and more people got on their feet and off the meds, then one day, perhaps Big Pharma just might not be so big anymore...

just one example
 

Suppose, just suppose, that in some lab somewhere there is a pill. This pill will do two things. It will eliminate PD symptoms by unblocking some hypothetical dopamine relationship. The other effect - from the same source - is it will eliminate the ability to get high from cocaine. The first effect eliminates a one billion dollar market controlled by BigPharma. But the other eliminates a 500 billion dollar market controlled by the most powerful men on the planet. That pill will never see the light of day. Hypothetically of course. (Hmmm. Odd. Don't see many black helicopters around here....) :D

drug
 

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

would they allow a parkie to try it?
 

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!

clinics
 

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.....