[smithclayriley]

For your info post.

I have been taking Zandopa for around two months. It has helped me reduce the Sinemet dramatically, fast, and surprising it was quite easy. I seem to have a new problem. I am addicted to the Zandopa. I feel more like a drug addict than ever before. I start getting edgy well before my med. schedule. Similar side effects I had with the high (1500 mg) Sinemet a day that I was once on (not too long ago) showed up again (vibrating legs, calf pain, no energy) Huh? That was fast; I started reducing Zandopa today.

I am having good results with L-Tyrosine and Dopavite at night so I will substitute that for the Zandopa while I try to reduce my Sinemet CR 100/25 from four to three a day. I did try three for about a week by changing to a 6 hour med schedule from 4 hours. I wasn't ready physically or mentally when I started to notice what effect Zandopa seemed to be having.

Sometimes one wonders if they will ever have a stable period in their life again. I'll keep those interested in reducing their dopamine posted.

Bonnie

[Fiona]

Hi Bonnie,
you know I also find that the mucuna I've been taking has stopped working for me and that the Sinemet actually is working better than it used to right now....weird. But I've also just had these extreme acupuncture implants, so my chemistry is going through many changes...but I am going to now give the kind of mucuna that Rick and Ibby take a try, along with the ginger and ashwaganda, and see whether that's different or not.

But had a revelation lately that I don't think it's ultimately all about dopamine for us, and the constant emphasis on dopamine is wrong somehow. I think serotonin is much more of the underlying avenue of approach....I am basing this entirely on instinct and revelations through deep meditation about my body, and struggling not to have a nervous breakdown these days. Realizing about all the corruption in our medical world in the last few weeks has taken a big toll on me....I knew, but I didn't know how really bad it was, and I feel devastated. But I digress. Anyway, I think serotonin is somehow the healing elixir, and we skew our chemistry by focusing so much on dopamine, making our bodies very adrenalized...or something like that. This is the opposite of hard science. It's very personal, completely uninformed and subjective science, a bright new field of inquiry for the future!!!

[reverett123]

Bonnie- What sort of dosages and timing are you using? And have you tried any form other than the Zandopa? Also, that was a lot of sinemet you were taking so any changeover should be gradual.

I agree with Fiona, there is much more than a natural form of Ldopa at work. And it doesn't take much either. I'm taking one teaspoon with a half tab of Sinemet CR 200/50 two to three times daily. I figure that to be five to eight grams. The studies say that 30 grams is an effective dose but that is too much. I also have good results when I leave the Sinemet out altogether but it doesn't last as long. Finally, combining it with a ginseng capsule also is effective for me.

What it is doing I have no idea, but I do feel that as I finetune this that I am improving overall. That feeling and the fact that ayurvedic use is of a cure rather than an indefinite ongoing treatment of symptoms makes me think that it is changing something and it seems for the better.

My wife (non-PD) tried it and the effect was almost like a tranquilizer. (She is very sensitive so a little goes a long way.) So it may be acting on the stress element as well.

It may also be adaptogenic. In fact that is what I am hoping for - something a little more subtle.

[smithclayriley]

Rick, back at you soon. I need to take care of this back and not sit too long.

Bonnie

[smithclayriley]

Rick,

I was taking 1 tsp of MP powder with 1 Sinemet CR 100/25 four times a day. After two months I noticed the MP makes me feel like I need more and that scares me. I have not had any problems with L-Tyrosine and I have been on it for approx. 4 or 5 months. I wouldn't do more than 500 mg daily to start with. I can take 1500 mg but mainly take 1000 mg between 6pm to 6am with Melatonin. I stopped taking Creatine and L-Glutamine on a regular basis until I get into a regimented exercise program.

[lou_lou]

Name of medical problem: Parkinsonism/ Parkinson's disease
Ayurveda name: Kampa Vatha

According to the principles of Ayurveda, Parkinson's disease develops because of aggravation of Vatha dosha in the nerves in the brain. Aggravated Vatha dosha can dry up the nerves with adverse affects.

The disease usually develops during middle age or old age. According to western medical views the loss of dopamine - the nerve transmitter is one of the main causes of the disease.



Specific symptoms:

Patient may develop tremors (shaking) of hands or fingers. This is present before starting work (Movements of fingers like pill rolling). Sometimes this can be seen even in the rest of the body. But once he/she starts to do something, the tremors will stop.

Patient feels stiffness (rigid) present in muscles.

When walking, patient cannot turn at once.
Ayurveda Treatments


Internal treatment:

Usually a set of decoctions (herbal medicinal drinks) is given. At the beginning decoction should contain ingredients to achieve a balance of Vatha dosha and later the decoctions should have nutritious or rejuvenating value. The decoctions contain masha (Undu) - Phaselolus radiatus, Babila - Sida cordifolia etc. and are very effective decoctions
Dasamula Arishta which contain several ingredients including herbs and roots such as Aswenna, Polpala, Ela batu, Katuwelbatu, Hin nerenchi, Beli, Midi, Thotia, Palol, Et demata and other herbs, are also given orally to balance the Vatha dosha and as a tonic.
Ashwaganda Choorana - orally taken herbal powder. Dosage, one teaspoon, twice a day with milk. It contains medicinal plant namely Ashwaganda-Withania somnifera, which has mainly a rejuvenating property and acts as a nerve tonic.
External treatment:

Following treatments are also given depending on the patient's condition.


Shiro Abhyanga and Shareera Abhyanga (special head and body oil application)

Shiro Dara Treatment (special head oil treatment)

Pinda Sweda Treatment (Mild oil massage is administered to the patient with the help of special milk rice medicinal bundles made of cheesecloth.

Shiro Vasti treatment (Keeping oil over the head with the help of special cap)

Nasya karma (drops inhaled through the nose)

Rasayana karma (Rejuvenation)
Prospects of cure:

Depends on the severity and complications of the disease. If in the early stages, disease can be retarded, and symptoms can be controlled.
Minimum period of treatment in order to see improvements should be more than four weeks.

http://instituteofayurveda.org/english/casestudies.htm
http://www.toddcaldecott.com/ayurvedic_book.html

[rosebud]

It seems to me we have found something beneficial in another culture, but we have taken a typical western approach by extracting that element from its natural place and plunking it down in our pile of "things that work". But we overlook an important feature...it is part of a package, sort of like a full meal deal at McDonalds....

Life is not always a smorgasbord, and that may be the downside of this approach. Also don't forget that all you are doing really is trading one style of levodopa, for another. You are possibly just confusing your body, which is causing chaos in your brain ( or vice versa??)

Just my thoughts on the whole matter. We have to learn to walk before we can run.

[smithclayriley]

Hi Fiona,

Like you I have other things going on. I am seeing a physio-therapist for numbness on my left side of my face. I don't have any noticeable paralysis or facial dis-figuration but it is odd and has been going on for a year. It may be as simple as how I hold my head. My lumbar problem has a lot to do with my posture which affects everything else. I notice sometimes I am so out of tune with my body I even forget to breath properly. Sometimes I catch myself holding my breath.

Boredom from years of this affects me psychologically. That is where the Serotonin comes in. Right now I am taking 200 mg of Zoloft a day, I will lower it to 100 mgs and go off it completely. I have done this a few times. Do you take an anti-depressant?

I do feel down even though I have made great strides in lowering my dopamine. I am finding it difficult to relax. I have the adrenaline problem back again as well. Maybe this is natural.

In some cases I wonder if it may have a lot more to do with emotional personalities than dopamine. Which compliments your theory. My observations are based on very limited information of course. I noticed a higher number of teachers received a pd diagnosis than in other careers. Why, viral or control? And is this fact or fiction?

My family history is all about physical pain and how badly it was handled. My Mom and sister spent half their lives in bed popping prescription drugs for pain. My Dad is riddled with arthritis and does no drugs of any kind but his life has been miserable because of pain. And their pain and now mine may have control issues. I felt controlled by them and I know my children feel the same about me. This is what I want to change in my life.

I thought I had escaped being the tomboy, athletic, and going for it. I feel dragged in. I am not feeling sorry for myself just po'ed at.........I can't remember anymore! Oh yeah the pain. But upwards and onwards

Bonnie

[leonore]

Hi, Fiona, and the rest of you. Fiona, you are so on my mind. And I agree that there is something about the serotonin in mucuna/zandopa that leads me to "feel" better, across the board. That said, I have yet to figure out how to titrate even a very small daily amt of Mucuna powder, as in, 1/4 teaspoon, (mixed with zandopa) for myself CONSISTENTLY, with my Stalevo, without running into dyskinesias galore, or, a jumpy manic-ness I do not like at all.

Even worse, ironically,and paradoxically, is a sort of kick-back effect whereby I actually have felt, since introducing mucuna, more deeply depressed at times, following a slow but significant improvement in mood and a sense of calm well-being --on the heels of the introduction of mucuna into my life back in April. Until recently, Celexa, (10 mg) for the past five years, had fully eliminated the PD-induced depression that had slowly crept into my normally upbeat. "go-getter" psyche, due, I'm certain, to organic changes from PD. Then my neurologist told me this past January that he'd heard compelling enough anecdotal reports and reseach that of all the SSRI's, Celexa is implicated the most in worsening motor symptoms, and strongly suggested I switch to Lexapro, which I did..

Being that major family medical stressors seemed to make me more syptomatic this past winter and spring, I'd been increasing my Celexa to 20 mg., and while I felt less stressed, I had, indeed, been getting worse and worse motor symptoms. So, I switched to Lexapro, (maybe did a little better motorr-wise)and a few months later, added mucuna. This is when I experienced the surprise of a definitely better mood, and somewhat better "on" stretches. But....conversely, when I went "off," the emotional piece was far worse, too!

So what was it? Interesting to hear all of your dimilar stories out there in Neuro-talk-land. Disappointment and let-down after feeling "teased" by genuinely feeling better, or ...is it something about mucuna? An addiction high and low? I wish I knew. Cycling between highs and lows is unfamiliar to me, and never has been part of my experience. I'd heard and seen plenty about it from my private-practice therapy clients, for sure. But my psyche is more familiar with plain old run-of-the-mill depression and anxiety, greatly exacerbated by PD and until lately, relieved by Celexa. Thus, the mucuna-induced jumpiness and depression, alternating with, honestly, the most "normal" and undepressed I'd been in years, took me by surprise, and has been really frustrating! Nowadays, I'm very cautious with mucuna, and am using it as a "rescue" remedy when I'm off.

Like Fiona, the details of the corruption and greed of PD docs who sold out welders for a salary from industry also took a terrible toll on my PD health. Since PD, my old resilience seems to have vanished, and being confronted with malevolence actually shuts down my dopamine. And yet I feel compelled to confront it, and take it on, something I was fed with mother's-milk. Sometimes activism galvanizes me and turns on my dopamine/serotonin or whatever! "feel-good neurotramitter" reserves, but that comes from brainstorming and problem-solving with kindred spirits. But confronted most recently, over past six months, it seems, with mean-spirited, small-minded, close-hearted, door-slamming forces which stand stubbornly and determinedly in my path, I crash. That is not the old me. I hate this new fragility.

I consider myself an idealist, but also a realist, and not an innocent by any means, and yet, and yet... I literally was knocked off my feet by the idea of physicians who dedicated their lives to helping those with PD, being willing to travel for a price to the underbelly of our human vulnerabilities, climbing under the bedsheets with the likes of Bush and his cohorts. It really undid me.

So, folks, those are my thoughts today. In fact, I am getting shut randomly on and off all day long, these days, by no clear forces whatsoever, as of late, without much mucuna at all. Heat, humidity? Maybe. But I am also, surprisingly, not very depressed, either--just frustrated as all hell. My doctor started me on long-acting once-daily Requip this week, to reduce my dystonia and prevent my climbing above daily dose of 350-400 mg of Stalevo. The news today, though, about 8.2 million payout to Mirapex gambler makes me uneasy, as too-much-extreme-sleepiness made me give up agonists long ago, and I hate re-introducing them.
And then there's the appearance on an unexplained "node" found in my stomach during an endoscopy my doctor ordered last week because of stomach discomforts, and "node" is now awaiting biopsy. It could be benign, says my intern. Apparently, however, "node" means lymph node, and that doesn't sound great. But it could explain my recent downturn. Or, maybe Cape Cod 2-week vacation as of Friday will cure me. signing off, and wishing you all well, and thanks for listening....your new buddy, Leonore
__________________
“WHEN I DARE TO BE POWERFUL, TO USE MY STRENGTH IN THE SERVICE OF MY VISION, THEN IT BECOMES LESS AND LESS IMPORTANT WHETHER OR NOT I AM AFRAID.”
Audre Lorde: (1934-1992) African American, lesbian-writer/poet/warrior, who gave us the gift of her courage, before cancer stole her away


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Update on my mom and everything else joellelee2000 The Stumble Inn 14 04-07-2008 09:00 PM
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ot update mamafigure Parkinson's Disease 3 09-01-2007 05:55 PM
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Hi, Fiona, and the rest of you. Fiona, you are so on my mind. And I agree that there is something about the serotonin in mucuna/zandopa that leads me to "feel" better, across the board. That said, I have yet to figure out how to titrate even a very small daily amt of Mucuna powder, as in, 1/4 teaspoon, (mixed with zandopa) for myself CONSISTENTLY, with my Stalevo, without running into dyskinesias galore, or, a jumpy manic-ness I do not like at all.

Even worse, ironically,and paradoxically, is a sort of kick-back effect whereby I actually have felt, since introducing mucuna, more deeply depressed at times, following a slow but significant improvement in mood and a sense of calm well-being --on the heels of the introduction of mucuna into my life back in April. Until recently, Celexa, (10 mg) for the past five years, had fully eliminated the PD-induced depression that had slowly crept into my normally upbeat. "go-getter" psyche, due, I'm certain, to organic changes from PD. Then my neurologist told me this past January that he'd heard compelling enough anecdotal reports and reseach that of all the SSRI's, Celexa is implicated the most in worsening motor symptoms, and strongly suggested I switch to Lexapro, which I did..

Being that major family medical stressors seemed to make me more syptomatic this past winter and spring, I'd been increasing my Celexa to 20 mg., and while I felt less stressed, I had, indeed, been getting worse and worse motor symptoms. So, I switched to Lexapro, (maybe did a little better motorr-wise)and a few months later, added mucuna. This is when I experienced the surprise of a definitely better mood, and somewhat better "on" stretches. But....conversely, when I went "off," the emotional piece was far worse, too!

So what was it? Interesting to hear all of your dimilar stories out there in Neuro-talk-land. Disappointment and let-down after feeling "teased" by genuinely feeling better, or ...is it something about mucuna? An addiction high and low? I wish I knew. Cycling between highs and lows is unfamiliar to me, and never has been part of my experience. I'd heard and seen plenty about it from my private-practice therapy clients, for sure. But my psyche is more familiar with plain old run-of-the-mill depression and anxiety, greatly exacerbated by PD and until lately, relieved by Celexa. Thus, the mucuna-induced jumpiness and depression, alternating with, honestly, the most "normal" and undepressed I'd been in years, took me by surprise, and has been really frustrating! Nowadays, I'm very cautious with mucuna, and am using it as a "rescue" remedy when I'm off.

Like Fiona, the details of the corruption and greed of PD docs who sold out welders for a salary from industry also took a terrible toll on my PD health. Since PD, my old resilience seems to have vanished, and being confronted with malevolence actually shuts down my dopamine. And yet I feel compelled to confront it, and take it on, something I was fed with mother's-milk. Sometimes activism galvanizes me and turns on my dopamine/serotonin or whatever! "feel-good neurotramitter" reserves, but that comes from brainstorming and problem-solving with kindred spirits. But confronted most recently, over past six months, it seems, with mean-spirited, small-minded, close-hearted, door-slamming forces which stand stubbornly and determinedly in my path, I crash. That is not the old me. I hate this new fragility.

I consider myself an idealist, but also a realist, and not an innocent by any means, and yet, and yet... I literally was knocked off my feet by the idea of physicians who dedicated their lives to helping those with PD, being willing to travel for a price to the underbelly of our human vulnerabilities, climbing under the bedsheets with the likes of Bush and his cohorts. It really undid me.

So, folks, those are my thoughts today. In fact, I am getting shut randomly on and off all day long, these days, by no clear forces whatsoever, as of late, without much mucuna at all. Heat, humidity? Maybe. But I am also, surprisingly, not very depressed, either--just frustrated as all hell. My doctor started me on long-acting once-daily Requip this week, to reduce my dystonia and prevent my climbing above daily dose of 350-400 mg of Stalevo. The news today, though, about 8.2 million payout to Mirapex gambler makes me uneasy, as too-much-extreme-sleepiness made me give up agonists long ago, and I hate re-introducing them.
And then there's the appearance on an unexplained "node" found in my stomach during an endoscopy my doctor ordered last week because of stomach discomforts, and "node" is now awaiting biopsy. It could be benign, says my intern. Apparently, however, "node" means lymph node, and that doesn't sound great. But it could explain my recent downturn. Or, maybe Cape Cod 2-week vacation as of Friday will cure me. signing off, and wishing you all well, and thanks for listening....your new buddy, Leonore
__________________
“WHEN I DARE TO BE POWERFUL, TO USE MY STRENGTH IN THE SERVICE OF MY VISION, THEN IT BECOMES LESS AND LESS IMPORTANT WHETHER OR NOT I AM AFRAID.”
Audre Lorde: (1934-1992) African American, lesbian-writer/poet/warrior, who gave us the gift of her courage, before cancer stole her away


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Similar Threads
Thread Thread Starter Forum Replies Last Post
Update on my mom and everything else joellelee2000 The Stumble Inn 14 04-07-2008 09:00 PM
Update GreyHoundLover Reflex Sympathetic Dystrophy (RSD and CRPS) 3 12-19-2007 08:24 PM
ot update mamafigure Parkinson's Disease 3 09-01-2007 05:55 PM
Update on new SCS junk4myemail Reflex Sympathetic Dystrophy (RSD and CRPS) 0 08-24-2007 03:18 AM
Update junk4myemail Reflex Sympathetic Dystrophy (RSD and CRPS) 4 07-20-2007 08:51 PM



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Update junk4myemail Reflex Sympathetic Dystrophy (RSD and CRPS) 4 07-20-2007 08:51 PM



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Originally Posted by Fiona

Hi Bonnie,
you know I also find that the mucuna I've been taking has stopped working for me and that the Sinemet actually is working better than it used to right now....weird. But I've also just had these extreme acupuncture implants, so my chemistry is going through many changes...but I am going to now give the kind of mucuna that Rick and Ibby take a try, along with the ginger and ashwaganda, and see whether that's different or not.

But had a revelation lately that I don't think it's ultimately all about dopamine for us, and the constant emphasis on dopamine is wrong somehow. I think serotonin is much more of the underlying avenue of approach....I am basing this entirely on instinct and revelations through deep meditation about my body, and struggling not to have a nervous breakdown these days. Realizing about all the corruption in our medical world in the last few weeks has taken a big toll on me....I knew, but I didn't know how really bad it was, and I feel devastated. But I digress. Anyway, I think serotonin is somehow the healing elixir, and we skew our chemistry by focusing so much on dopamine, making our bodies very adrenalized...or something like that. This is the opposite of hard science. It's very personal, completely uninformed and subjective science, a bright new field of inquiry for the future!!!

[reverett123]

One thing that has impressed itself on me is that a little mucuna goes a long way. Also, it potentiates (or maybe even synergizes with) sinemet and maybe even requip. So it definitely should be used with caution with other drugs. If I take a little too much sinemet with it, I get dyskinetic and I would expect the same reaction with stalevo.

I am having pretty good success with manipulating it and controlling most of that. However, the anti-depressants and possible interactions there is another matter entirely and I would be very careful there. In fact, my personal choice would be one or the other but not both. Depression can be deadly.

Also, the traditional use is not ongoing and open-ended like the other drugs we use and there is surely a reason for that. It might be, too, that a little every few daysmight be better.

But, with all those cautions, there is still something of value here. I will continue to sneak up on it and see what I can find. But I will respect it.

Finally, as to the evil and greed, the "hollow laughter in marble halls", I can't help but feel that the tide is turning. I hear rumbling and squeaking down in the hold of the SS BushCo and I think we are about to see rats leaping over the rail like lemmings. With a little luck, maybe they will misjudge the distance to the shore.

[QUOTE=leonore;339204]Hi, Fiona, and the rest of you. Fiona, you are so on my mind. And I agree that there is something about the serotonin in mucuna/zandopa that leads me to "feel" better, across the board. That said, I have yet to figure out how to titrate even a very small daily amt of Mucuna powder, as in, 1/4 teaspoon, (mixed with zandopa) for myself CONSISTENTLY, with my Stalevo, without running into dyskinesias galore, or, a jumpy manic-ness I do not like at all.

Even worse, ironically,and paradoxically, is a sort of kick-back effect whereby I actually have felt, since introducing mucuna, more deeply depressed at times, following a slow but significant improvement in mood and a sense of calm well-being --on the heels of the introduction of mucuna into my life back in April. Until recently, Celexa, (10 mg) for the past five years, had fully eliminated the PD-induced depression that had slowly crept into my normally upbeat. "go-getter" psyche, due, I'm certain, to organic changes from PD. Then my neurologist told me this past January that he'd heard compelling enough anecdotal reports and reseach that of all the SSRI's, Celexa is implicated the most in worsening motor symptoms, and strongly suggested I switch to Lexapro, which I did..

Being that major family medical stressors seemed to make me more syptomatic this past winter and spring, I'd been increasing my Celexa to 20 mg., and while I felt less stressed, I had, indeed, been getting worse and worse motor symptoms. So, I switched to Lexapro, (maybe did a little better motorr-wise)and a few months later, added mucuna. This is when I experienced the surprise of a definitely better mood, and somewhat better "on" stretches. But....conversely, when I went "off," the emotional piece was far worse, too!

So what was it? Interesting to hear all of your dimilar stories out there in Neuro-talk-land. Disappointment and let-down after feeling "teased" by genuinely feeling better, or ...is it something about mucuna? An addiction high and low? I wish I knew. Cycling between highs and lows is unfamiliar to me, and never has been part of my experience. I'd heard and seen plenty about it from my private-practice therapy clients, for sure. But my psyche is more familiar with plain old run-of-the-mill depression and anxiety, greatly exacerbated by PD and until lately, relieved by Celexa. Thus, the mucuna-induced jumpiness and depression, alternating with, honestly, the most "normal" and undepressed I'd been in years, took me by surprise, and has been really frustrating! Nowadays, I'm very cautious with mucuna, and am using it as a "rescue" remedy when I'm off.

Like Fiona, the details of the corruption and greed of PD docs who sold out welders for a salary from industry also took a terrible toll on my PD health. Since PD, my old resilience seems to have vanished, and being confronted with malevolence actually shuts down my dopamine. And yet I feel compelled to confront it, and take it on, something I was fed with mother's-milk. Sometimes activism galvanizes me and turns on my dopamine/serotonin or whatever! "feel-good neurotramitter" reserves, but that comes from brainstorming and problem-solving with kindred spirits. But confronted most recently, over past six months, it seems, with mean-spirited, small-minded, close-hearted, door-slamming forces which stand stubbornly and determinedly in my path, I crash. That is not the old me. I hate this new fragility.

I consider myself an idealist, but also a realist, and not an innocent by any means, and yet, and yet... I literally was knocked off my feet by the idea of physicians who dedicated their lives to helping those with PD, being willing to travel for a price to the underbelly of our human vulnerabilities, climbing under the bedsheets with the likes of Bush and his cohorts. It really undid me.

So, folks, those are my thoughts today. In fact, I am getting shut randomly on and off all day long, these days, by no clear forces whatsoever, as of late, without much mucuna at all. Heat, humidity? Maybe. But I am also, surprisingly, not very depressed, either--just frustrated as all hell. My doctor started me on long-acting once-daily Requip this week, to reduce my dystonia and prevent my climbing above daily dose of 350-400 mg of Stalevo. The news today, though, about 8.2 million payout to Mirapex gambler makes me uneasy, as too-much-extreme-sleepiness made me give up agonists long ago, and I hate re-introducing them.
And then there's the appearance on an unexplained "node" found in my stomach during an endoscopy my doctor ordered last week because of stomach discomforts, and "node" is now awaiting biopsy. It could be benign, says my intern. Apparently, however, "node" means lymph node, and that doesn't sound great. But it could explain my recent downturn. Or, maybe Cape Cod 2-week vacation as of Friday will cure me. signing off, and wishing you all well, and thanks for listening....your new buddy, Leonore
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