Newly diagnosed with Parkinson’s - Parkinson's Movement

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Newly diagnosed with Parkinson’s

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Hi, last Monday I was diagnosed with Parkinson’s and my daughter says I should consider the hallucinogenic drug ibogaine! Info on sources, experience, dose etc would be welcome.

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I don't know anything about Ibogaine, but I believe high intensity exercise at least three times per week is the best thing you can do. Google "High intensity exercise for Parkinson's Disease" and you'll get lots of inspiration. Here is one of many stories.

parkinsonsnewstoday.com/201...

kaypeeoh
kaypeeoh in reply to jimcaster

I did an HIIT workout earlier today, following Dr Mercola's method. He recommends an elliptical trainer but I do better using my treadmill. I walk for 10 minutes as a warm-up. Then set the machine to 8% incline and 6MPH speed. When the machine hit 11 minutes I jumped on the rolling tread and ran for 30 seconds then jumped off straddle the tread. 90 seconds later the treadmill said 11 minutes and I jumped back into a run on the tread. I followed the pattern til the last sprint at 24 minutes. For each 90 second rest I was bent over the machine gasping for air.

I've done this regularly for 4 years. Obviously it hasn't prevented my getting PD but maybe it's why I don't have any signs other than micrographia and tremor in one hand,

kevin

Others will provide additional advice, but I highly encourage you to click "Read More" on MB Anderson's profile, which I have attached below. High Dose Thiamine is also highly recommended.

healthunlocked.com/user/mba...

I think the idea on exercise is a very good one. So much of the human body has been based on the idea of "use it or lose it," or at the very least, "use it reasonably to keep it, and you'll be surprised for how long that lasts." Into your nineties if the people I live with in my retirement community are any indication. Seems to be a universal phenomenon where the body and mind are concerned. Very good indeed.

Now I don't think you need to be an extremist, and the science I am aware of also seems to say "Don't be so compulsive as to wear it out." There is a goldilocks zone for most of us. Think "golden mean." There are a couple of people on this list who can help flesh that out.

rescuema
rescuema in reply to MarionP

This is true. The healthiest and most robust elders are the ones that hardly sit around for long and tend to stay very active, and almost never overdo anything.

Now, a little about ibogaine. Since it has some interesting properties, it is really important to ask that doctor (or daughter, or anyone really) "What were you thinking, and why that choice instead of some other ones you could have made?"

Never ever be afraid to ask a doctor "why" and "why this not that?" and to explain it to the point that you feel you yourself have some understanding. After all, it is your body and a reasonable practitioner will appreciate, rather than become impatient, with you asking followups so that you get the reasoning.

The best first -off general commentary about it, without having had any explanation or background information from you, is what the general introductory summary at wikipedia says. You can make of it what you will and research it further.

It starts out with some very very cautionary language. To whit:

"Ibogaine is a naturally occurring psychoactive substance found in plants in the family Apocynaceae such as Tabernanthe iboga, Voacanga africana, and Tabernaemontana undulata.[3] It is a psychedelic with dissociative properties.

Preliminary research indicates that it may help with drug addiction;[3] however, there is a lack of clinical research.[4] Its use has been associated with serious side effects and death. Between the years 1990 and 2008, a total of 19 fatalities temporally associated with the ingestion of ibogaine were reported, from which six subjects died of acute heart failure or cardiopulmonary arrest. The total number of subjects who have used it without major side effects during this period remains unknown.[3] It is used as an alternative medicine treatment for drug addiction in some countries. Its prohibition in other countries has slowed scientific research.[5] Ibogaine is also used to facilitate psychological introspection and spiritual exploration. Derivatives of ibogaine that lack the substance's psychedelic properties are under development[6]. However, analogs of Ibogaine such as 18-MC, are not psychedelic nor psychoactive,[7] and have shown a positive safety profile in clinical trials.[8]

The psychoactivity of the root barks of the iboga tree (Tabernanthe iboga), from which ibogaine is extracted, was first discovered by the Pygmy tribes of Central Africa, who passed the knowledge to the Bwiti tribe of Gabon. French explorers in turn learned of it from the Bwiti tribe and brought iboga back to Europe in 1899-1900, where it was subsequently marketed in France as Lambarene. Ibogaine-containing preparations are used for medicinal and ritual purposes within African spiritual traditions of the Bwiti, who claim to have learned it from the Pygmy peoples. Although it was first commonly advertised as having anti-addictive properties in 1962 by Howard Lotsof, its Western use predates that by at least a century. In France, it was marketed as Lambarène and used as a stimulant. Also, the U.S. Central Intelligence Agency (CIA) studied the effects of ibogaine in the 1950s.[9][citation needed]

Ibogaine is an indole alkaloid that is obtained either by extraction from the iboga plant or by semi-synthesis from the precursor compound voacangine,[10][11] another plant alkaloid. The total synthesis of ibogaine was described in 1956.[12] Structural elucidation by X-ray crystallography was completed in 1960.[13][14]

Psychoactive effects

Ibogaine is derived from the root of the Tabernanthe iboga, a plant known to exhibit psychedelic effects in its users.[15] The experience of ibogaine occurs in two phases, termed the visionary phase and the introspection phase. The visionary phase has been described as oneirogenic, referring to the dreamlike nature of its psychedelic effects, and lasts for 4 to 6 hours. The second phase, the introspection phase, is responsible for the psychotherapeutic effects. It can allow people to conquer their fears and negative emotions. Ibogaine catalyzes an altered state of consciousness reminiscent of dreaming while fully conscious and aware so that memories, life experiences, and issues of trauma can be processed.[16]

Uses

Ibogaine-containing shredded bark of Tabernanthe iboga for consumption

Medical

See also: Ibogaine § Research

Ibogaine is not currently approved for any medical uses.[3] Clinical studies of ibogaine to treat drug addiction began in the early 1990s, but concerns about cardiotoxicity led to termination of those studies.[4] "

So far it seems to a very risky chemical indeed. Myself, I wouldn't go near it. I'd ask your daughter if she is a licensed physician, and if so, whether she has her professional liability insurance premiums paid up and has no conflict of interest, say, of inheriting from you after the stuff kills you. Meanwhile, what it has to do with PD, I sure wasn't able to dig up.

rescuema
rescuema in reply to MarionP

Oh my... that last bit made me chuckle but I'd hesitate to question the daughter's pure motive.

It's still in a theoretical stage, but there are some evidences that ibogaine may have therapeutic benefits for PWP.

"The theoretical case is based on the fact that both ibogaine and its metabolite noribogaine have been shown to lead to an increase in levels of glial cell line-derived neurotrophic factor (GDNF) in the brain.2 It has also been shown to have neuroprotective qualities promoting the survival of both dopaminergic and motor neurons....Ibogaine therapy, especially low-dose regimens, may facilitate the expression of GDNF without the side effects of other medications or the difficulty of other avenues of administering neurotrophic factor. Anecdotal reports suggest that at least several people with Fibromyalgia, Multiple Sclerosis, and Parkinson’s who have been treated with ibogaine have seen an extended remission of symptoms."

ibogainealliance.org/ibogai...

youtube.com/watch?v=a7M3t1K...

youtube.com/watch?v=6Nb5OYg...

I recommend exercise to naturally increase GDNF safely along with thiamine therapy.

MarionP
MarionP in reply to rescuema

Think of it as typically British understated humor combined with American hyperbole. What can you do, they'll let just about anybody in here. What was it Groucho Marx said? "On no account would I be a member of any club that would have me."

Personally I would prefer (and do use) large oral doses of (the easily obtained) L-Tyrosine. It's a dopamine precursor (and tyrosine is an amino acid) that crosses the blood-brain barrier (which actual dopamine cannot do) BEFORE it is manufactured into dopamine, so as to be able to take advantage of,or at least better fuel, the dopamine producing capabilities of those dopamine producing cells you have left in that critical region where the disease is the die-off of those dopamine producing cells.

Also being a precursor to epinephrine and norepinephrine, in doses that are mildly stimulative) it can give you more energy and a better sense of well being. Subtle in the latter effect, but very important. Together, dopamine, epinephrine, and norepinephrine comprise the three catecholamines, and they are all in the same chemical manufacturing chain that starts with L-Tyrosine. As long as you have some dopamine producing cells left in your substanta nigra, it's a gentle way (I believe) of making the most of what you have, by providing them with the basic fuel they need to make dopamine, with no side effects. Think of it as what you would gain from eating fava beans or mucuna pruriens (same thing) to aid your issues that lie outside your CNS (legs, hands, etc.).

rescuema
rescuema in reply to MarionP

LOL -without seeing you say it, I'd be concerned the OP may possibly misinterpret the not so unrealistic humor and confront the daughter or cut off her inheritance.

Yes, L-Tyrosine is good for raising tyrosine which is a precursor for dopa and norepinephrine, but additional options are -

Mucuna Prurien - considered as one of the more effective remedy with its 5% naturally occurring L-dopa. Much stronger than another braod bean, Fava.

L-Theanine - for crossing the BBB to raise brain dopa while also raising Gaba, seratonine along with other neurotransmitters. Also an effective sleep aid and blocks glutamate receptors reducing stress and associated high blood pressure.

Rhodiola Rosea root - improves the dopa reuptake

and intermittent fasting - spares dopamine used for GI digestion

MarionP
MarionP in reply to rescuema

Now how, if I can ask, do you go about obtaining L-Theanine into your body? How does it get past the breakdowns of the digestive system?

rescuema
rescuema in reply to MarionP

Have you tried any L-Theanine supplement?

mdlinx.com/internal-medicin...

ncbi.nlm.nih.gov/pubmed/311...

MarionP
MarionP in reply to rescuema

No, but I shall look into it. Despite Sauron the Elsevier charging me $50 every time I want to read one of the 75% of journal articles they control in the world.

rescuema
rescuema in reply to MarionP

Here you go

agri.ckcest.cn/file1/M00/06...

neurology-asia.org/articles...

MarionP
MarionP in reply to rescuema

Far out, many thanks!!

Ibogaine has been discussed on this forum several times. I believe one or two people were trying it. If you use the search function you will find them.

MarionP
MarionP in reply to rebtar

Love to hear the report back. While waiting, I'll watch the movie Fear and Loathing in Las Vegas to pass the time, until we hear back with what I am sure will be better information. Cheers!

I've had PD for 4 years and I take 2g of b1 in addition to c/l prescribed meds . I noticed that one of my siblings started to show some symptoms of the disease. I told him about high dose thiamine ( B1) therapy and he started on 2g. B1 has low toxicity so he felt that there was little risk in trying it. Interestingly enough after few weeks his symptoms subsided and he also got rid of the joint pain. He recently decided to stop taking it and after 3 day break the pain returned with vengeance. He resumed b1 and the pain went away. I am not sure how much good b1 does for me but subjectively it makes me feel better. This is not a medical advice of course . This is just a description of my own experience. As far as I know iboga is a controlled substance in US ( legal in other countries). You can find few people on this forum who tried it . I understand that they used micro doses so there were no psychoactive effects.

MarionP
MarionP in reply to felixned

"he started on 2g. B1 has low toxicity so he felt that there was little risk in trying it. Interestingly enough after few weeks his symptoms subsided and he also got rid of the joint pain. He recently decided to stop taking it and after 3 day break the pain returned with vengeance. He resumed b1 and the pain went away."

In scientific experimentation, this is known as a 'reversal.' And quite interesting. Thanks for this post!

felixned
felixned in reply to MarionP

Yes MarionP. I want to repeat that these 'sample of one ' experiments have very little s

cientific value . However I was happy that all of the many hours of research I spent reading about pd potentially benefited my brother.

MarionP
MarionP in reply to felixned

Well, that's what we call "case report." "Hey, it works for me, so it counts for me." Legitimate, if not general-isable.

Defo high intensity exercise is more beneficial

Wasn't Ibogaine the poison used in the Swan Princess? it sounds a lot like ketamine. I've tried it and felt different after the use. Had no effect on the tremor that I can recall.

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