I'm wondering is there is a scientific guidance or a rule of thumb about how much Sinemet is too much for PWP. I have been very careful about the intake of C/L because of the side effects will come with the long time use of this drug but my panic button was activated when I read a post from a member here about "Parkinson's disease death rate: carbidopa and vitamin B6" from a link to ncbi.nlm.nih.gov. It's about the increased death ratio in PWP because of the carbidopa component and the depletion of the coenzyme 5'-PLP which the research refer as a nutritional catastrophe.
A question arise to me, will Vitamin B-6 mitigate this damage? I have been with PD for 13 years now and I'm taking C/L 3 1/2 a day 50/200 ER. and mucuna pruriens capsules just to relieve symptoms. In addition I'm taking a lot of supplements to fight the disease, high intake of veggies, fruits and exercise. Sometimes I take an additional c/l pill if I have to go to an extra event at night because my last dose of the day is about 3:00 to 5:00pm. I feel like I'm on the border of my limits as more than 3 1/2 pills a day cause me some dyskinesia (head movement notable) and that's annoying and do not allow me to sleep. My goal is to reduce to 3 c/l a day (to feel I'm at a maximum safe level) but it has been very difficult to achieve as it seems that the 1/2 pill I take first time in the morning along with another full pill makes the difference to allow me make my morning exercise routine. If I get started just in one c/l pill my off period comes very early and can not exercise. Exercise is what make me still walking. Past month I went to visit family overseas for two weeks. I didn't exercise that long and my diet changed completely. I came back very afraid could not walk anymore almost confined to a bed or wheelchair. I hurt my lower back/right hip and could not exercise for another week. I have to go to ER and get a steroid shot have relieved me and finally had been able to catch up with my exercise and diet again this week. I'm planning to apply to a medical marijuana license next week looking for some additional help with the symptoms that allow me to cut back Sinemet intake if possible to none. Recommendations welcomed!
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marnegro
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Hi. This is exactly the type of info that I find useful for my own efforts to reduce my L-dopa. In return, I'll try to share what I *think* I know about it. There's a lot to unpack in your post. First off, just because that paper was on a govt server doesn't mean it's based on reality; anyone can publish their medical-related ideas there. Here's a link to a skeptic's page about it: quackwatch.org/11Ind/hinz.html And a quote:
"Several people (or their relatives) have told me that they had sought Hinz's treatment because they were afraid that standard treatment might make them die sooner. Hinz is orchestrating this fear. His Parkinson Clinics Web site states: "A review of the Center for Disease Control data revealed the death rate for the disease has increased by 390% since the first full year of marketing of this drug occurred." The review to which he refers is a journal article he co-authored in 2012 [43]. He is correct that the number has greatly increased, but does not prove that carbidopa was responsible. CDC itself has indicated that "the increase might be attributable to multiple factors, including an aging population, greater awareness of the disease, and improved identification of cases." [44]. Recognition of the disease has increased significantly since the 1970s, partly because there are more effective drugs to treat it, so diagnosing the disease has value. Experts I have consulted agree that the death-rate increase Hinz trumpets is far more likely to be due to more accurate diagnosis than to carbidopa toxicity."
So, B6 might not be the problem that you think it is. But if you still want to cut down on the carbidopa you take, one possibility is to drink grapefruit juice. It's complicated and not for everyone, but do a search for it on this forum.
Third, I agree with your diet as you describe it. I turned vegan 2 years ago and I'm pretty sure it's helped. And I understand what you're saying about exercise; for me, it's a balance that I'm still working on. My approach has been to reduce persistently but slowly. Over the past 3 months, I've reduced by 16%. That's before I started experimenting with GJ, which might screw up my calculations if I'm not careful.
I'll keep checking every 2-3 months to see if I can reduce any more. I'll try to reduce by no more than 10% every 10 weeks. I get these numbers from a free online book written by someone who helped many PwP to reduce, some down to 0. Here's a link to "Once Upon a Pill": pdrecovery.org/wp-content/u...
Although I've found this book to be useful, it can be hard to decipher, and some of her claims of "recovery" are controversial.
Levodopa Medications, Vitamin B6, and the Hinz protocol
"According to Marty Hinz, carbidopa will deplete your vitamin B6 and cause declining health. This is a bit of an exaggeration. It is true that if a molecule of B6 encounters a molecule of carbidopa they will bind together irreversibly and thus disable each other. That will happen if you take them close together in time - they will meet up in your stomach or small intestine. So do not take vitamin B6 and levodopa medication together! Allow at least two hours between one and the other.
Once the B6 is clear of your GI tract the carbidopa will meet up with the enzyme that converts levodopa to dopamine, and disable it, which is what is supposed to do. Some carbidopa may get into circulation, bind to and disable some B6, but this doesn't matter as long as you have plentiful B6 in circulation. "
In the comments to the post silvestrov added some expert commentary of his own. Also a Hinz proponent expressed his point of view.
If I understand you correctly, your medication is 3.5x200 C/L ER per day, i.e. 700mg /day. The bioavailability of ER is about 70% of IR. So, your levodopa equivalent daily dose is about 500mg. You also take macuna, but you don't say how much. Unless you're a small person, it seems to me, that 500mg is on the low side.
The problem with ER pills is that they can be inconsistent in their effect. This means that they can clock in at different times on different days. You have 3 doses per day, but no further control. One pill could start late while the next could start early. This could explain the levodopa induced dyskinesia. You can reduce the ups and the downs by taking smaller doses more frequently.
I would document everything: when you take the pills, when you are stiff, tremor is present, dyskinesia is present, when you eat - gastric emptying and protein competition can be problems.
Rather than try to solve the whole problem at once, I'd focus on one part: the start of the day is usually the easiest time to work with. You could start with 100mg C/L IR + 200mg C/L ER. Ideally you would take these on an empty stomach and not eat for a hour. The IR pill should give you a boost over your present regimen. If it works, make a second move. If not, go back a step.
Ever since I was diagnosed with Parkinson’s disease, it seems like so many people have stated that “People don’t die from Parkinson’s Disease”, thus making it sound more like a benign condition, rather than a serious disease, that can cause disability, etc. I have found this prevalent belief, means that some people don’t realize how difficult the disease process can be, and how it can really affect many of the body’s systems. Parkinson’s is a neuro-degenerative Disease, as is Alzheimer’s, and amyotrophic lateral sclerosis. Therefore, there can be some severe, life-altering problems, for some PWP. The progression of PD with me, has affected my walking, balance control, cogwheel rigidity affecting hands and feet, swallowing, vision, temperature control (autonomic system), constipation, orthostatic hypotension, taste, smelling, bladder control, peripheral neuropathy, numbness in face, hands, feet, and a few other symptoms as well. So, when I’m having a bad day, and fall backwards, hurting my shoulder, ribs, and twisting my knee, or have a freezing episode, where I can’t move for a few moments, then I fall face forward, causing blunt force trauma, and a concussion, because I am frozen, can’t move to stop my fall, the last thing I want to hear, is that “Oh, it’s just Parkinson’s. People don’t die with Parkinson’s, so you could have it much worse!” This isn’t just a diatribe, complaining of my problems. Rather, this is what living with Parkinson’s, is like, for many people. This is the reality of living with advancing, progressing Parkinson’s! It would be great if a research breakthrough would occur, and PD could be controlled better, by finding a way to curtail or prevent progression. Finding a cure would be miraculous, and one can always hope!
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