How I went from 13 to 4 a day (Carbidopa ... - Cure Parkinson's

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

Gcf51 profile image
25 Replies

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 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.

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Gcf51
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25 Replies
Astra7 profile image
Astra7

Where do you get AMFT from?

Gcf51 profile image
Gcf51

Astra7 I wasn't able to find AMFT, I searched everyway I could think of.

puretone profile image
puretone

newscientist.com/article/22...

GymBag profile image
GymBag

Did some doctor put you on 13 Ld a day. Read the warnings on the package , quickly reducing to 5 a day could very well kill you. Is there a single other person at Health Unlocked who takes over 10 a day. Did you just decide yourself to take 13. ? Unbelievable

I have been diagnosed now around 20 years and I can not get my Neuro to increase it to 6 a day.

And what is AMFT. Are you just making this stuff up as you go along

JMSL profile image
JMSL in reply to GymBag

I have been on 12 tablets of 25/100 C/L per day (2.5 every 3 hours while awake) per order/recommendation of a MDS neurologist. So I am a "single other person at Health Unlocked who takes over 10 a day"! I am not saying it was a great dose for me but I was on that amount for at least several years and saw other MDS during that time, none of whom recommended lowering the dosage even when I questioned taking that amount. Also FYI Dr. Ahlskog (Mayo Clinic) in his book says "there is no arbitrary ceiling on how much you can take per day." I very gradually reduced the dosage on my own because I wasn't happy with how I was moving. My new MDS supports trying a lower dose but we haven't yet found the sweet spot for dosage and intervals. Please remember that we are all individuals with unique versions of PD and we are all searching for answers, not for put-downs.

jeeves19 profile image
jeeves19

Bit harsh Gymbag?

MarionP profile image
MarionP

I think we would benefit from quite a bit more articulation, and explanation here. How about taking a stab at it, most of us seem not to know at all what the heck you were talking about, but I would like to.

Gcf51 profile image
Gcf51 in reply to MarionP

read ncbi.nlm.nih.gov/labs/pmc/a...

Todd-pw profile image
Todd-pw

hi gymbag i was taking seven 150m co careladopa a day and a modified release 200mg at night which was prescribed by my neurologist. I definitely was not absorbing the medication. i have managed to cut down by changing my diet and also having a fmt treatment. I have never heard or come across AMFT either.

Gcf51 profile image
Gcf51

Those that don't understand - read the link posted again. ncbi.nlm.nih.gov/labs/pmc/a...

Smittybear7 profile image
Smittybear7 in reply to Gcf51

How do you test for that?

Gcf51 profile image
Gcf51 in reply to Smittybear7

I have no idea.

134A profile image
134A

That link doesn’t work. Paywall?

Gcf51 profile image
Gcf51 in reply to 134A

I think the link didn't work because I didn't have a space after, It should work now.

Gcf51 profile image
Gcf51

GymBag To the best of my knowledge, I did not make anything up. There are things that came from other sources. Like Dopamine toxicity pubmed.ncbi.nlm.nih.gov/151... for one.

And to all !!!! I have a degree in engineering and English is not my strong suit. I have reread a few times and question how I can write it more coherent, more articulate... I guess I should be embarrassed to write anything on this forum... :-(

My prescription is for 1-1/2 tablets, 5 times a day, of Carbidopa 25/Levodopa 100 mg. (only 7-1/2 a day). I have a bad neck and my understanding with my neurologist was to take for elimination of neck pain. I now take Advil for my neck pain.

bullet65 profile image
bullet65

I have read the link but would like info on AFMT dosage and is it prescription or a supplement.

Gcf51 profile image
Gcf51 in reply to bullet65

Me Tooooo....

Gcf51 profile image
Gcf51

akgirlsrock AFMT is a substance mentioned in the study that inhibits the bacteria from converting your meds to toxic levels of dopamine in your gut. I don't know how to obtain. A googled shopping search for (s)-α-fluoroethyltyrosine yields many things and I am not sure if any are AFMT.

akgirlsrock profile image
akgirlsrock in reply to Gcf51

I just read article, on Afmt (fluoromethyl tyrosine) Thank you

faridaro profile image
faridaro

This is very interesting aspect of levodopa metabolism. Can you please just clarify this sentence " So, there are two good reasons; To have an empty section of small intestine (less bacteria and no protein), I started taking at least 30 minute after taking and an not eating at least one hour after,"? I assume you are talking about taking L-dopa, but the timing part is confusing.

Gcf51 profile image
Gcf51 in reply to faridaro

I revised the main statement. Hopefully it will be better understood.

Gcf51 profile image
Gcf51

faridaro

There are two good reasons, to have an empty section of small intestine while taking your L-dopa:

1) less bacteria

2) no protein

To have an empty section of my small intestines, I started taking L-dopa at least 30 minutes after eating and an not eating at least one hour after,

Thanks, Sorry, when I read it makes perfect sense..

faridaro profile image
faridaro in reply to Gcf51

Thanks Gcf for clarification!

Gcf51 profile image
Gcf51

Important!!! It is not recommended to make drastic changes (up or dn) of l-dopa.

Gcf51 profile image
Gcf51

…For most patients, only about 1 to 5 percent of the drug (l-dopa) actually reaches the brain…

dopamine outside the brain, the compound can cause side effects, including severe gastrointestinal distress and cardiac arrhythmias…

maybe it’s going to be toxic

news.harvard.edu/gazette/st... .

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