Parkinson's Disease Tulip


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Old 07-23-2008, 03:49 PM #11
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Funny you should mention blockages - my wife and I were talking about that just last night. So much of what I experience are subjectively blockages of one sort or another. You could describe it as being of nerve transmission or qi and I would not argue with either term. When I wake up there is a fifteen minute period where, for no apparent reason, my left foot wants to scrunch up but then suddenly changes its mind. Thirty minutes later the meds start coming on and it is like valves are opening and something begins flowing into the lower chakras or, if you prefer, a collection of neural plexi in the area from the solar plexus on down into my legs. Accompanied by much grunting and mumbled curses and repeated stretching, the flow increases and then, suddenly, it is as though the sun jumped above the horizon and birds are singing like an old cartoon. This whole episode takes an hour or so normally, but is cut to fifteen minutes if I have a little mucuna. If I take a little too much I get dyskinetic and my head and neck twist this way and that. It takes much less if with sinemet.

In the evenings or if I forget to take something or if I get an MSG hit, I go off over a fifteen minute period and it is like the gates of a canal lock closing - again a flow is blocked. It is a recurring part of the experience and makes me more and more interested in the idea of energy flowing along routes or meridians. A strange disease indeed.

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Originally Posted by Ibken View Post
I've been using mucuna since mid '05 , both w/ sinemet and without. sometimes with just carbidopa (lodosyn) and I have - and still do - experienced what i call dyskinesia as a result. It manifests during both the 'on'' period - 1st 30 miin or so after taking it - and when it begins to ''wear off' about an hour or more. What i'm calling dyskinesia is initially a sudden involuntary muscular walking up on my toes. Then an outward stretching out of my left leg and foot, followed by a twisting - writhing action of the ankle - then more toe walking, etc and I'm 'on'. There is some sort of blockage in my left leg that seems to be the reason for these strange movements... and it must be getting worse wiith time, as this so--called dyskinesia diddn't happpen early on. Read MJF's description of what he experienced after taking l-dopa. The off dysk is worse, painful left ankle twisting, can't walk - have to go lie down.

Maybe those w/out such a block don't expperience this ''resistance" effect? One more reason for white rats to cage in clusters, yes, learning from each other!

Hard to talk about such things, when we don't really know what means what!

ibby
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 07-23-2008, 07:54 PM #12
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Default blockages, again

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Originally Posted by reverett123 View Post
Funny you should mention blockages - my wife and I were talking about that just last night. So much of what I experience are subjectively blockages of one sort or another. You could describe it as being of nerve transmission or qi and I would not argue with either term. When I wake up there is a fifteen minute period where, for no apparent reason, my left foot wants to scrunch up but then suddenly changes its mind. Thirty minutes later the meds start coming on and it is like valves are opening and something begins flowing into the lower chakras or, if you prefer, a collection of neural plexi in the area from the solar plexus on down into my legs. Accompanied by much grunting and mumbled curses and repeated stretching, the flow increases and then, suddenly, it is as though the sun jumped above the horizon and birds are singing like an old cartoon. This whole episode takes an hour or so normally, but is cut to fifteen minutes if I have a little mucuna. If I take a little too much I get dyskinetic and my head and neck twist this way and that. It takes much less if with sinemet.

In the evenings or if I forget to take something or if I get an MSG hit, I go off over a fifteen minute period and it is like the gates of a canal lock closing - again a flow is blocked. It is a recurring part of the experience and makes me more and more interested in the idea of energy flowing along routes or meridians. A strange disease indeed.
rick, shortly before pd symptoms appeared, i saw an acupuncturist for the first time - felt like i needed a tune up or something after my bout w/ hep A . he said i had low chi on the left side and needled it...when he twirled the needles i felt the chi shoot down my leg and slam into a brick wall a couple of inches above my left ankle - approximately where i now feel the block. there is a temp dif above & below the block and the sensation is different.

JW-H says people w/ pd have chi blocks along the stomach channel from the denial of old injury. her theory is brilliant and convincing - too bad her therapy didn't work. i'm still trying to get the blockage cleared. have tried a little electro accupuncture but am cautious with that - not sure it is the right approach. have you read her books?

ibby
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Old 07-24-2008, 12:41 PM #13
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A lot to reply to here. Aquario, yes, I have experience with ayahuasca in the mediation of PD. Its main component, the banisteriopsis caapi vine, was actually the subject of promising studies decades ago in the US for PD - abandoned because unpatentable, I believe...

Under the psychoactive effects of Ayahuasca, I generally am symptom-free, but they return as soon as it wears off -at least for me. But I have also been afraid to go fully into El Grand Remedio, as it is known down there, because many of its most powerful curative effects are achieved through the purging -vomiting and diarrhea - that generally accompany a full dose, and I'm uncertain as to how that could stress my Parkinsonian body and what interaction it could have with my meds. Many ayahuasca healers won't work with people on PD meds, altho some will, but I have not been able to get a clear answer from anyone whether it's a risk or not. The wonderful healers I work with in South America say they are not sure because they just don't understand anything about these modern meds - and I don't blame them, the whole intent behind Western PD meds seems not to cure but at best to maintain, and make a profit....

However, I really believe in Ayahuasca on many levels, and have been daily taking a very small non-psychoactively significant dose as a general tonic. I want to experiment further. As a spiritual healing agent, it is by far one of the most significant experiences I have had, and an amazing array of completely magical occurrences have accompanied my journeys with it. Be aware it is illegal in some countries - in the USA was 'decriminalized for religious purposes only' by our Supreme Court a year or two ago. One of the issues with its safety is its status as an MAO inhibitor, which we're not supposed to combine with PD drugs...however I know it is a mild reversible MAO - well, either just A or B inhibitor - just one of those, which is similar to mobeclomide - sorry, my science is bad and don't have time to fix it this moment - but mobeclomide is allowable I think with PD drugs. I think recent ideas about Ayahuasca is that it gradually helps regenerate dopamne and serotonin receptors...certainly works to rewire the brain and for the better - have seen this many times work in other people.

MDMA, illegal just about everywhere, totally erases the symptoms while under its effects, and possibly for even a day or two afterwards, and I think gradually acts as a restorative...well, I'm saying this hypothetically because since it's illegal, I can only imagine experiences such as these....or something like that......as to its causing PD, as widely reported as represented by a later retracted single study in which it turned out that they used the wrong bottle - whoops! those whacky guys in white coats sure know how to have fun ad pay attention in the lab - and used an entirely different substance than MDMA. The fact is that MDMA has been used every weekend by millions worldwide, and I think we would be hearing a lot more about Early Onset PD by now if it did that. Incidentally, MDMA causes less visits to the emergency room yearly -something like less than any other 'abused substance,' and certainly much less than alcohol does....

As for Ibogaine, I have been very interested in finding out about this. Got this response from friend of friend privately, someone very familiar with low-dosing techniques with Ibogaine (names cited not given in the interest of some kind of confidentiality:

-----
"The problem with ibogaine is that it's tremorgenic in and of itself; without doing any research or having first-hand experience with dosing individuals who are suffering from Parkinson's, I would say that dosing them with ibogaine is an extremely poor idea...basically, the Dept. of Neurology, the Brain Bank, the Ibogaine Research Project, all actually live within the Parkinson Foundation building, which pays the bills on a tremendous amount of research. If there was even the slightest hope that ibogaine would be a good thing for Parkinson's, 'Professor X' would have issued 25 different patents covering all the bases, before even starting human research. She never bothered.

Preliminary research seems to indicate that ibogaine does have profoundly positive effects on a variety of conditions other than drug dependence. 'Researcher Y' is running around with the, "Ibogaine lowers viral load in Hep C patients" stuff; which is ... mostly unproven at this point. But, it also lowers viral load in people who are HIV-positive. And some research coming out of Japan seems to demonstrate that when drug-resistant cancer-patients are treated with ibogaine, after this event ... suddenly, the drugs that were doing nothing; start working...

All of this is pretty fascinating, but ... it's extremely unlikely that ibogaine itself will ever be used for any of these purposes; it's more of a molecule that has this entire spectrum of interesting effects we really don't understand yet, and in the process of unraveling what it does, 2nd and 3rd generation drugs based upon this science, will eventually hit the market.

Ibogaine is a pretty fascinating molecule for studying the brain in a variety of different states. So, to give a very short, simple answer to your question:
So my question to you (since you are the low dosing expert); is it dangerous for a Parkinson's patient to take Ibogaine in low doses?

I'd say it's probably an extremely poor idea. I am also familiar with drug-dependence, and the usual pharmacy of prescription drugs that individuals may also be using (anti-depressants, SSRI's, etc, etc); while I am almost completely unfamiliar with Parkinson's and what specific drugs people are using to manage their conditions. Pharmacokinetics are complex, but the basic starting point is: nothing that competes at cyp2d6 (cytochrome p450 2d6), should be present, at the same time anyone doses with ibogaine."

So there you have that. But it sounds very much to me like these peeps don't really know that much about PD and have dismissed it too summarily. I want to investigate a little further.

Lastly, mucuna - well, after several pretty good months with it, I am finding it less effective, more likely than less to cause dyskinesia, and that ol' Sinemet has been working better for me again. Which in itself is quite remarkable, because it wasn't before, and I have gone off the Neupro patch since without replacing it with anything like Mirapex or Requip....yay! But not sure what to make of the mucuna issue - it's possible its best use is to cycle on and off it periodically, as it says in the bottle, or similarly to its use as fertilizer plant in Central America where they plant it for two years in a field, which can then be replanted with regular crops immediately as opposed to letting a field lie fallow for five years....they say "it gives the land courage."

Meanwhile, I have only been using one kind of mucuna, and am experimenting with other kinds (thanks so much, Ibby, my dear) and maybe that will make a difference.
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Old 07-25-2008, 01:36 PM #14
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Fiona, many thanks for your thoughtful and informative reply. Some years ago I ate peyote and found it a powerful ally in curing me of a nasty and persistent addiction which had rendered me spiritually unfit for life. So with a diagnosis of p.d. a couple of years ago, I began to wonder what in nature’s pharmacopoeia might be beneficial for my current state. I’ve been following the various posts in this forum on the pluses and minuses of mucuna, so one thought lead to the next (is there any other way?), and it seemed to me that tryptamines might be an avenue. I’m not yet on meds so perhaps I can explore some areas that would be “off limits” to me later on. I have a dear friend in Brazil who has spoken highly of the effects of ayahuasca – though only in regard to it’s spiritual potentiators. I did take MDA (a pre-cursor to MMDA) back in the 70’s and found it exceptionally benevolent. In fact there is a govt-backed study now taking place on the east coast to treat returning soldiers who have PTSD with MMDA, as well as a study at Harvard with MMDA and cancer patient anxiety. I wonder if MMDA may well share some of the same molecular structure of selegiline.

And thanks for the alert on ibogaine. It sounds even more explosive than El Grand Remedio (now there’s a cure for constipation). Speaking of things So. American, have you read Wade Davis’ book One River. A remarkable and gracefully written biography of the great Harvard ethno-botanist Richard Evans Schultes, with many descriptions of the effects of banisteriopsis blended with MAO inhibitors.
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Old 07-25-2008, 05:44 PM #15
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Hi Fiona, thanks for the information from your friend. I assume he is discussing Dr. Deborah Mash from Univ of Miami, Fl, in reference to the numerous patents on ibogaine metabolites (she holds at least 2 patents on its metabolites). I spoke with her on the phone and she stated she had never entertained the thought of studying whether Ibogaine had any effect upon PD--she was unaware of any lab or clinical studies of GDNF and PD, or the AMGEN aborted trial. And she has been studying Ibogaine and its metabolites for many yrs (she heads a private clinic on St. Kitts which provides Ibogaine/metabolites as treatment for addiction). Perhaps the people who know about Ibogaine have not even thought about its utility in Parkinson's. The metabolite supposedly is absent the hallucinogenic effect of the parent drug. wonder what effect it has on tremor-producing properties of the partent drug.
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Old 07-27-2008, 11:01 AM #16
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Yeah, Madelyn, you are right about who I was referring to... And yes, my conclusion is that these investigators know nothing about Parkinson's or even more importantly to me, PD meds......which gives me hope because if they haven't thought about it, maybe there are possibilities.

Also thanks Aquario for your response - pressed for time this moment, but will respond more later...
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