I started back on Sinemet two days ago; 100/25 One half tab TID for one week, then one tab TID for one week then 1.5 TID for one week then a recheck. The neuro said it's important to take it with food.
When I tried Sinemet last year I remember something about taking it on an empty stomach--either one hour before or one hour after a meal--and avoid high protein meals. All to improve absorption I assume.
So what has changed? This neuro said it's to prevent stomach upset and vomiting. I'm happy with that.
My breakfast: steel cut oatmeal microwaved with almond milk and crunchy peanut butter.
Lunch: Peanut butter and banana sandwich OR cold cuts sandwich.
Dinner: Steamed veggies. Lot of them.
On top of the Sinemet my only medication is Bisacodyl. Having one 5mg tab with lunch ensures a BM--albeit with a lot of grim effort--the following morning.
All day I sip a smoothie made from almond milk, cruciferous veggies and fruit.
Now that it's cold enough for snow I've lost my taste for beer. Makes it easier to stick with this diet.
I don't know that the Sinemet is doing anything positive or negative. For a brief period yesterday evening I noticed almost no dominant hand tremor.
When I see the neuro in three weeks I'll ask about B1, cinnamon, mannitol and maybe marijuana, all things I've read about on this forum. I don't know whether it's legal in Connecticut but I have family in Colorado who could sent it here. In fact my younger brother might jump on his Harley and deliver some to me.
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kaypeeoh
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first; if you are at the beginning, i warmly suggest you to consider to try other natural solutions before Sinemet (es. B1, fast walking, gut healing, mucuna + turmeric ).
Levodopa/Carbidopa meds are highly addictive drugs.
Once you begin with them after a few weeks to withdraw may (may) be impossible or even lethal.
L/C meds have two effects, one short term (minutes/hours) on the frontal cortex and the other long term (weeks/months), on the ancient deep brain (limbic system - autonomous).
levodopa in meds is far much more than the missing (and needed) and it reaches the neurons in huge quantity. To try to manage the flood, neurons will stop creating their native dopamine and with the time they will loose the capability to produce it. In addition it competes for absorption with other amino acids in the gut creating in the long term a nutritional deficiency (especially of tryptophan) likely causing the side effects of the drug (insomnia, ansia, fatigue). This is a drug induced PD (ie. if you take insulin every day you can become diabetic)
But this huge quantity is what make the meds effective (when they work) in the short term. In a few minutes symptoms may magically disappear (rigidity more often than tremors) to come back after a few hours.
much less levodopa (10 to 100 times less) can be effective (when it is) in the long term (weeks/months).
in ancient India they use natural mucuna pruriens (5% of levodopa) without carbidopa (5 to 6 times less absorption) and taken with food (fat or milk) to slow down absorption in the gut (no peaks and hurts to brain).
In this way levodopa reaching the brain is much less than with L/C meds and it can be used by neurons without switching off their native production.
An even smaller amount of levodopa will reach within weeks the deep brain (where the problem is) and will reduce symptoms.
dose adjustments should be done after 10 to 12 weeks and when effective reduced of half the last increase. this regimen gives to your brain the minimum that it needs without excess and can last for the rest of your life without the need to increase or the side effects of meds.
You will not see fast response but will not see fast downs (wearing off). This is good because after intake L/C meds can take 20' to 40' to onset (kick in), while they take 5' to leave you blocked.
pls bear in mind that drugs accumulate in the tissues and the brain giving an inertia effect both rising up and down. This inertia in the deep brain can last weeks if capability to produce native dopamine is preserved.
Said that, if you remain on L/C meds, if i were you, with my current knowledge, i would take it with food if possible (at the beginning generally it is) to avoid peaks but you will also slow down onset.
remember: right meds do not heal you, they masks the problem in the short term, the more you get from them the more they take from you.
right life style (food, supplements, no stress, exercise) can stop progression or even heal you but it takes time
last but not least.... food is very important with Sinemet but may be more with PD.... new theories say it can come from dysbiosis in the gut, that gives a bad absorption of nutrients, that gives a nutrition deficiency and a shortage of amino acids (mainly tyrosine and tryptophan).
and to end: a good part of levodopa is destroyed by stomach acids. the longer the transit the less the quantity absorbed. It is absorbed (via active carrier) in the small intestine after being in parte attacked and further reduced by potent gut enzyme.
So: empty stomach generally gives the best result in terms of onset and duration;
carbo: impact is limited (may be even better because a little carbo can activate insuline that speeds up nutrient absorption by cells)
fats: slow down the absorption, it can be good because it may slow consumption and increase but, if too slow, with the risk to not reaching the effective concentration in the blood stream.
proteins: they reduce the amount absorbed (competition for the active carrier in the gut), so risk of poor concentration and ineffectiveness but if L/C meds have always priority, risk of nutritional deficiencies of other amino acids in the long term use
mix of two or more: even less and longer absorption of the single elements(may be intentional)
cacao, green tea, turmeric, grapefruit, coffe, and more can interfere with absorption and duration (increased)
hope this helps (BTW I'm not a doctor, thus consult with your neuro before taking any action based on what i've written here)
In part. Much of what this poster writes is not supported by evidence. His/her strategy is to write such long posts that no one can summon the energy to rebut the claims.
But I'll try:
"L/C meds have two effects, one short term (minutes/hours) on the frontal cortex and the other long term (weeks/months), on the ancient deep brain (limbic system - autonomous).
levodopa in meds is far much more than the missing (and needed) and it reaches the neurons in huge quantity. To try to manage the flood, neurons will stop creating their native dopamine and with the time they will loose the capability to produce it. In addition it competes for absorption with other amino acids in the gut creating in the long term a nutritional deficiency (especially of tryptophan) likely causing the side effects of the drug (insomnia, ansia, fatigue). This is a drug induced PD (ie. if you take insulin every day you can become diabetic)
But this huge quantity is what make the meds effective (when they work) in the short term. In a few minutes symptoms may magically disappear (rigidity more often than tremors) to come back after a few hours.
much less levodopa (10 to 100 times less) can be effective (when it is) in the long term (weeks/months).
in ancient India they use natural mucuna pruriens (5% of levodopa) without carbidopa (5 to 6 times less absorption) and taken with food (fat or milk) to slow down absorption in the gut (no peaks and hurts to brain).
In this way levodopa reaching the brain is much less than with L/C meds and it can be used by neurons without switching off their native production.
An even smaller amount of levodopa will reach within weeks the deep brain (where the problem is) and will reduce symptoms.
dose adjustments should be done after 10 to 12 weeks and when effective reduced of half the last increase. this regimen gives to your brain the minimum that it needs without excess and can last for the rest of your life without the need to increase or the side effects of meds."
Pretty much all of this is made up. On the off chance that some snippets are sorta-true, I'll address the primary claim:
"this regimen gives to your brain the minimum that it needs without excess and can last for the rest of your life without the need to increase or the side effects of meds."
This is false. Or at least, never demonstrated. There's no evidence that mucuna users can adopt a stable dose (forever) and will suffer no side effects, and all of the evidence points to the contrary.
"right life style (food, supplements, no stress, exercise) can stop progression or even heal you but it takes time"
Heal?? Who has been healed?
There's no progression stopping formula that we know about yet and no one has been "healed". And no, pdrecovery.org is not evidence until they are willing to subject their claims to scientific examination, which they are not. The fact that a woman is willing to be interviewed about her recovery from PD doesnt mean she has actually recovered from PD. The fact that multiple men have had the hubris to write and sell books (or consulting services) about their recovery from PD does not mean they have recovered from, or even ever had, PD.
IMMO, Who knows this and prevents from reporting this risk to a newly diagnosed PwP is a criminal. Simply
- "His/her strategy is to write such long posts that no one can summon the energy to rebut the claims."
This comment seems to come from a PwoP more than a PwP and you are 101% wrong in this. this is not my strategy.
I don't spend my precious time ON to write long posts to avoid rebuts. i know I don't own the truth and I'm open to discussion old and new ideas and i like proven rebuts therefore I write these things for the pure hope and spirit to help someone not to make my mistakes at the beginning of his journey with this disease.
where is the risk to find an open minded doctor and discuss with him the opportunity to use mucuna pruriens natural for some months at the beginning of the disease?
Answer is by common sense.
- "This is false. Or at least, never demonstrated. There's no evidence that mucuna users can adopt a stable dose (forever) and will suffer no side effects, and all of the evidence points to the contrary."
There is no evidence because none pharma company is interest to do testing to discover that poison could be effective and safer at 1/100 of the dose they suggest. Simple.
But there are anecdotical stories in the blogs and documented results for other meds (see Naltrexone and Low Dose Naltrexone).
It is not dangerous to eat 5/10 grams of a bean as a supplement (or powder with pharmaceutical grade of levodopa) every day and then see what happens. Safer is better than faster.
Don't let big-pharma doctrine to replace common sense.
Toxicity is first in the dose
- "There's no progression stopping formula that we know about yet and no one has been "healed"." you missed the untold "and none will be"
If you really think this, then what are you on this site for?
Destroying tiny hopes? Fold every PwP to accept your same way to go? Keeping (trolling) PwP in the folder (business) of conventional (symptomatic and hopeless) medicina?
What PwP decide in this phase can be fundamental for his future and in my point of view "Safer is better than faster."
I don't spend more of my ON time to answer to someone' comment that focused on criticizing more then helping members to understand
where is the risk to find an open minded doctor and discuss with him the opportunity to use mucuna pruriens natural for some months at the beginning of the disease?
It is so dangerous to eat 5/10 grams of a bean as a supplement (or powder with pharmaceutical grade of levodopa) every day and see what happens?
your profile is clear and i understand the ratio behind.
But if people come to sites like this it is because they fell they miss something that can not be found in conventional doctors and medicine and are looking for something new, an inspiration, a new scope, an address, a reference, an alternative or simply a tiny hope for their future
Discovery/Progress/real changes do not happen when we get new/more data, but when we look at the what we have with different eyes. This is the first step to take to resist to the disease. Healing doesn't necessarily means to get rid of the disease - and we know that meds an drugs are only symptomatic so don't heal, but can also mean to accept the new condition and find an acceptable balance or life with it.
These kind of comments blocks this process and tries to bring back the sheep in the (hopeless) fold (business) of conventional medicine.
As far as taking advice from medical amateurs, I will say that the "movement disorder specialist" neurologist I have been seing has prescribed levodopa from which I get almost no benefits but hughe side effects. Then, pescribed more meds with more side effects to "counter" first meds... resulting in meds' symptoms worse than the disease. Then, when I asked about DBS, this specialist only replied that DBS is not for patients that don't do well on levodopa...
So, having a degenerative disease for which there is no cure and being offered such treatment options by my movement disorder specialist, turning to "amateurs" I learned about magnesium for toe cramps, B12 for tingling, glycine for insomnia, diet for help with dystonia, etc, etc, by members like Rescuema, Chartist, Kia17, etc, that actually helped me manage my symptoms, but most of all, I learned about FUS PTT procedure by Lenamm, Trixiedee and MBAnderson, which actually give me some hope for the future.
Some of these generous people have lived with PD for many years and are very knowledgeable.
As a matter of fact, they actually make the difference between having hope for a future at age 58 and being left totally hopless by my "specialist".
Very well said Parkie! It's great to discuss problems with others that are dealing with the same issues. I'm not going to burden my Dr with small potatoes. There are many bright people here who are book smart and experienced. Where else you gonna go and get this kind of support? Folks here have no problem understanding their Dr is their medical professional calling the shots.
I agree too!! And I’m being cheeky but you mention diet for dystonia. Could I ask you to elaborate as my husbands tremor is getting difficult for him to manage and we want to try all we can before he has more meds if possible. Thank you everyone for your most informative posts!!
Thank you. Interesting although I can see trouble ahead with a vegan diet 🤣 he does so love, well, FOOD!! I may have to adopt a gently gently approach with that news! Lol. Thank you though. Knowledge is power and all that 😊
Sinemet can give you an upset stomach if you are just starting out with it. Sin equals without. Emet equals barfing. That's why your doctor wants to have a not empty stomach. As you get used to it and want to do more with the minimum dosage of sinemet you can optimize by planning your meal and snack times wisely.
I would think you’d want to take it with some food or some Ginger ale or something. They’re just more worried about protein. My doctor said that not everyone is sensitive to that protein effect, maybe later you can experiment. She told me an hour between medication and protein. The carbidopa in the levodopa should help the nausea, or maybe he’ll prescribe a separate pill for carbidopa to give you a little bit more if nausea does bother you. I wonder sometimes if they tell people empty stomach because they’re just afraid you know they’re gonna smash it up against proteins or some thing and it’s just easier to say don’t eat anything LOL.
Thanks for the replies. 40 years in medical-related field I had a long history of reading journal articles. Specialists know the material but also know the outliers in the Bell curves for every new article. That's the problem in my mind. They give too much credo to the outliers.
I saw this often in vet practice. In school we were taught never to treat a horse with tetracycline. Then once I was in practice the experienced vets told me that tetracycline was such an important drug they wouldn't be able to practice without it.
I think laymen here do the same thing; Put too much emphasis on the outlier while missing the body of the article.
I see a motion specialist in three weeks. I plan to ask about B1, cinnamon, mannitol, marijuana, and FUS.
Again, thanks for the replies. No criticism meant, this is just my experience over 40 years.
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