How I went from 13 to 4 a day (Carbidopa 25/Levodopa 100)?

[Gcf51]

How I went from 13 to 4 a day (Carbidopa 25/Levodopa 100)?

I started taking my L-dopa on an empty stomach (no eating 30 minutes before or 1 hour after). My prescription was written for 1-1/2 tablets 6 times a day (9 a day). With my Movement Disorder Specialist’s knowledge, I was taking 1 tablet every 50 minutes using keeping my neck pain to a medium as a gauge (13 a day). I first switched to 3 tablets 4 times a day and started taking Advil and a muscle relaxer for my neck pain (as needed). It is not recommended to quickly change your dose of L-dopa, so I reduced by ½ tablets a day every other day. By the time I got to ½ tablets every 4 hours, I had lost 25 pounds that I did not need to lose; I have since switched to 2 tablets twice a day (more time to eat) and have managed to gain the 25 pounds back.

There are two good reasons to have an empty section of small intestines before and after taking Levodopa:

1) Gut microbes eat our medication…For most patients, only about 1 to 5 percent of the drug [Levodopa] actually reaches the brain… If less of the drug reaches the brain, patients are often given more to manage their symptoms, potentially worsening the side effects... Carbidopa [has been added], to block unwanted L-dopa metabolism [in the body, but does not block gut microbes from doing it]. news.harvard.edu/gazette/st... .

… Even with… (Carbidopa), up to 56% of L-dopa fails to reach the brain… [Researchers have found a that], (S)-α-fluoromethyltyrosine (AFMT) prevented L-dopa decarboxylation by… and complex gut microbiota samples from Parkinson’s patients. science.org/doi/10.1126/sci... .

2) Protein competes with L-dopa for adsorption.

** I cannot find AFMT anywhere and to the best of my knowledge it has not been added to any formulations of L-dopa. Therefore (in my opinion), time release formations where L-dopa would be exposed to gut microbes for extended periods of time and/or taking more than 3 times a day, is a bad idea (maybe they have added AFMT). Also, it is widely accepted that there is a multitude of side effects of Carbidopa /Levodopa, one being dyskinesia (1).

And, does Vagus Nerve somehow carry dopamine to Brain.

1. Dyskinesias are involuntary, erratic, writhing movements of the face, arms, legs or trunk. They are often fluid and dance-like, but they may also cause rapid jerking or slow and extended muscle spasms. They are not a symptom of Parkinson's disease (PD) itself.

[johntPM]

I think that Gcf51's post is worth discussing. Perhaps the timing of the dose away from the time of eating will work for other people, perhaps it won't. (The advice is normally to separate eating protein from dosing.) But, the success of the regimen change for him goes to show that if your drugs are not functioning well, it is worth experimenting with alternative strategies.

[Gcf51]

I can't say that I have any improvements in my PD. Just making the most of L-Dopa. Maybe, I will avoid some of the supposedly side effects of taking L-Dopa.

Only the L-Dopa that makes it to your brain makes a difference.

I wonder if Ongentys is AFMT? Does Ongentys work in the body or the gut?

[NewHope1961]

So basically you are saying that try to keep a empty stomach as long as possible before and after taking C/L? Thx

[Gcf51 in reply to NewHope1961]

Less often too. That's unless you have off times.

[Gcf51]

Trying to avoid grabbing numbers out of mid-air so using numbers from original post

1) 1 to 5 percent of the drug [Levodopa] actually reaches the brain

2) Even with… [Carbidopa], up to 56% of L-dopa fails to reach the brain

So, where does the other 44% go?

I feel, I gained a good portion by not eating at least 30 minutes before or 1 hour after taking my l-dopa. My “14 a day down to 4” may be just a small portion of that remaining 44%.

My feeling is Ongentys saying “take on empty stomach, avoid eating 1 hour before and 1 hour after”. Ongentys’ is taking my “small portion of” and I hope adding some to it. Would I benefit taking Ongentys – maybe.

We can all agree we are after the remaining 44% when Carbidopa is added, in hopes of avoiding the supposed side effects of excess l-dopa, dopamine, Carbidopa… whatever causes the side effects.

Where does it go? Maybe some of it passes thru our gut untouched into our toilet, maybe some is eaten by bacteria, and maybe some is converted by enzymes in the body by some means other than what Carbidopa inhabits.

Bottom-line: l-dopa does us no good unless it crosses the BBB and is converted to dopamine there.

[Smittybear7 in reply to Gcf51]

I take 1 c/l 25-100mg every 8 hrs immediate release

about 21/2 hrs after I take it I get some side effects varying in frequency and intensity..Lip quivering, increased tremors, sometime gait and arm swing are affected. Varies from day to day ,some days nothing at all. .After about another couple of hrs everything goes back to normal until 21/2 hrs after next dose. Movement specialist says it can be either peak dose or not enough c/l. Very frustrating. I take many supplements, exercise and use a sauna once or twice a week. Trying to take as little meds as possible. I am also taking b1.Having trouble determining right dose. Interested in what you find. Good luck.