Plantago ovata husk (psyllium) administra... - Cure Parkinson's

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Plantago ovata husk (psyllium) administration caused a smoothing and homogenization of levodopa absorption

Thal profile image
Thal
34 Replies

Plantago ovata husk (psyllium) administration caused a smoothing and homogenization of levodopa absorption, providing more stable concentrations and final higher levels, resulting in a great benefit for patients.

ncbi.nlm.nih.gov/pmc/articl...

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Thal
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johntPM profile image
johntPM

Pharmacokinetics, what the body does to the drug.

Pharmacokdynamics, what the drug does to the body.

n = 18. "... there were no significant differences in any of the pharmacokinetic parameters studied." Nevertheless I see this as an important piece of work - optimizing the performance of levodopa is important to just about all of us, either now or in the future.

What would be useful is to repeat the process using pharmacodynamics tests, such as the side-to-side tap test. This could be done by PwP with just a laptop.

jrg54321 profile image
jrg54321 in reply to johntPM

It sounds like they are concluding that psyllium doesn't change maximum amount or the time it takes to reach the maximum amount of Levodopa in the bloodstream, but it does reduce peaks that could cause dyskinesia, etc.

sharoncrayn profile image
sharoncrayn in reply to johntPM

"Nevertheless I see this as an important piece of work..."

This study using POHusk was very weak in its design (i.e. very early PD, only n= 9 interventions, short duration, etc.). It didn't "optimize" anything.

Basically an almost worthless study unless you somehow believe smoothing the sine wave of AUC and the smoothing and homogenization of levodopa absorption will occur at all levels of disease progression and is critical or relevant at all levels. I doubt that it is. PD and its progression isn't that simplistic.

sharon

johntPM profile image
johntPM in reply to sharoncrayn

Sharon,

I think it "important" because it discusses an area of PD that affects PwP enormously: the variation in the effectiveness of a levodopa dose from one taking to the next. When it works, you might have a near normal day; when it doesn't, you may be stuck in a chair all day.

Moreover, there seems to be only a limited amount of research on the modulation of the response to levodopa using nutraceuticals. I contrast this to , on the one hand, research on levodopa itself and, on the other hand, a research on diet itself. The power of levodopa is such that any intervention that affects the performance of levodopa is, I believe, likely to have a larger effect than an intervention independent of levodopa. An example of this combined approach is the use of grapefruit juice with levodopa.

John

pdpatient profile image
pdpatient in reply to johntPM

Excellent response, @johntPM. The curse of this human condition is that no one else other than the PwP can understand the enormity of the pain that he or she or "they" go through.

You are spot on. There are days that I am and feel absolutely "normal". So normal that I can pretend to not have the disease. It is difficult to explain to anyone who has not watched me 24 hours a day, every day that as a YOPD patient, I have normal moments and abnormal moments and that I am not faking either.

People without Parkinson's need to chill out and consider at least brief moments of compassion.

RKM

sharoncrayn profile image
sharoncrayn in reply to pdpatient

So, 11 years working with 2 supports groups of 110-120 per year gives me no insights?

pdpatient profile image
pdpatient in reply to sharoncrayn

I don't dispute that you do have a unique perspective of a disease that the ordinary person doesn't have. But try as you might, you cannot possibly empathize or fully understand the "Parkinsonian experience". The desperate need for us to latch on to something, anything that offers a glimmer of hope for possible sustainable relief is palpable.I just want to wake up the next day without dreading that it is a new day and anxious about what it might bring forth.

My MDS once told me that he could never fathom the level of misery that I was going through and the emotional, physical and psychological pain that his patients go through on a daily basis. Compassion, attentive listening and understanding were his only "tools".

All I am saying is that I would expect the same from you, given the opportunity that you have here to demonstrate the positive impact that you can make using the insights that you have. Instead of being summarily dismissive and judgemental, why not let your responses be gentler, kinder and more mellowed?

The world that we PwP's used to live in, no longer exists for us and it has forever vanished, only to be replaced with a new normal that barely passes for real. In that context we expect better from you .

Makes sense, Sharon?

RKM

sharoncrayn profile image
sharoncrayn in reply to johntPM

Yes, the issue is important.

pdpatient profile image
pdpatient

Hmm, this probably explains why I have been feeling a lot better with Rytary than usual ever since I was forced to turn to Metamucil as I have been transitioning to a calorie reduction diet. Very interesting. Thanks.

RKM

ConnieD profile image
ConnieD in reply to pdpatient

How much Metamucil are you taking?

pdpatient profile image
pdpatient in reply to ConnieD

Hi @ConnieD, one tablespoon of Metamucil 3 times a day, mixed with one capful of Miralax. I take with each meal so that I can continue to follow the Rytary dosing and meal separation routine. I have diphasic dyskynesias which means I can get them on Ramp On [right after I take Rytary] as well as Ramp Off [as the time for taking the next dose approaches].

After I resumed Metamucil, my episodes of dyskynesias are almost gone. Since that's a "benefit" that I have long since written off as unachievable, I didn't connect the Psyllium with the improvement I am seeing now until I saw the article. I hope that I am correct and I will keep everyone posted if I do still see steady and sustainable improvement.

One thing is becoming increasingly clear. Our food habits and our gut plays an outsized role in our disease/condition and this knowledge is a mixed blessing for a food addict like me😭🍔🍕😍. I can do intermittent fasting, but this routine of eating tiny meals during the day was and still is driving me nuts. Good news is that I can feel full and satiated with Metamucil and it helps that its sweet and delicious.

Brand name Metamucil comes in rich orange flavor and comes in both sugar free and real sugar versions at Costco and at the best prices of course. However, you may find more flavor variations at other stores.

RKM

ConnieD profile image
ConnieD in reply to pdpatient

Very interesting, I take Metamucil on occasion and you’re right the orange flavor is good! I also suffer from dyskinesia only during on Time. I will experiment too, Please keep me posted. What type of diet are you on? Keto?

pdpatient profile image
pdpatient in reply to ConnieD

Calorie restriction😂LoL. Strictly enforced by my wife and I am forbidden from the kitchen which means I can't help myself.

So, this means that I can eat whatever I want in very small / tiny portions and strictly calorie counted. Exactly the same concept as Jenny Craig and Nutrisystem. The limited food obviously helps with Rytary absorption and Metamucil adds the fiber and kills my hunger.

I can't get my diabetes care team at Stanford to endorse anything else other than calorie restriction or intermittent fasting.

RKM

ConnieD profile image
ConnieD in reply to pdpatient

Do you use the sugar free version ? Metamucil is supposed to be good for cholesterol and of course the fiber is always what I mainly think of. Interesting as helping with hunger too. Was that a suggestion of your dr.’s.? Once you started the diet did you immediately add Metamucil?

What I’m wondering is did you notice an improvement in your dyskinesia on diet alone ? Thank you 😊

pdpatient profile image
pdpatient in reply to ConnieD

Yes, the sugar free version and it's as good as the real one. But my taste buds are not very discriminating just FYI 😂.

Metamucil was indeed my doctor's recommendation along with Miralax for regularity and three times a day was the recommendation for me. I was taking less before. The role of Metamucil in relieving hunger is something that is part of their marketing and advertising as well as proven for the base product that is called Psyllium or Isabgol and known in Ayurvedic medicine for over 400 years. Sounds familiar? Same story as in Mucuna Pruriens or what is today redefined as levodopa! Need I say more?

😂 bottom line, its not a scam. It even says that it's good for diet control on the bottle/can. But you have to be very careful about drinking water frequently. The bulk that three tablespoons a day makes is enormous and you can get into trouble by not drinking enough water. I drink at least a liter minimum and sometimes even two a day. You have to or else you might end up with bowel blockage which is dangerous.

Lastly, no, dieting alone didn't help with the dyskynesias.

RKM

ConnieD profile image
ConnieD in reply to pdpatient

Thank you. You have been most informative!! Please keep me posted or DM me, I would definitely like to know how you are doing! One last question are you on cd/ld or mucuna pruriens?

pdpatient profile image
pdpatient in reply to ConnieD

You are welcome. I am on Rytary. I am not on Mucuna Pruriens anymore because I used to travel extensively for work and it was difficult to explain to the TSA.

I am on Rytary which is just another form of Levodopa.

RKM

in reply to pdpatient

You sure are tenacious RKM. I’m impressed by your traveling for work while being about 10? Years in to PD? And with diabetes. That is a LOT. Work travel wiped me out prior to PD!

in reply to pdpatient

Intermittent fasting is very good for the brain. Frequent small meals is torture bc it stimulates your desire to eat but you can’t. It’s an outdated approach that has been debunked but this knowledge has not hit main stream. Please please listen to Dr. Jason Fung.

He specializes in helping people with diabetes.

pdpatient profile image
pdpatient in reply to

I have been a follower of Dr.Fung for several years, even before he went commercial. I agree with him and you. Unfortunately, you know how the "established" doctors are...especially at prestigious institutions like Stanford and UCSF.

BTW, they all record every conversation, every interaction, and every question you or I pose to them and "review" them if you ever get into trouble with yourself...everything is interconnected. Having two chronic conditions means that I can't go against their "orders" :)

RKM

in reply to pdpatient

I’m glad you are familiar with Dr. Fung. Fasting has changed my life. It sounded insane at first but I’m a believer in it now! Are you familiar with Dr. Charles Westman from Duke? He specializes in keto and diabetes. I have a lot of experience with UCSF. They make absolute certain to play it safe and not be culpable.

pdpatient profile image
pdpatient in reply to

Not familiar with Dr. Westman. I will explore him. Thanks for the lead.

You are right about the need for these institutions as well as the entire profession to play it by the "rules" so to speak. I don't blame them, I know that they pay huge premiums for the insurance coverage. But sometimes they can also become ridiculous. When they say "NO", it becomes hard to get the family to go along with you. Fasting is mostly harmless unless you get into trouble with things like dehydration and bowel movement.

BTW, how is your media platform outreach planning coming along?

RKM

in reply to pdpatient

Dr. Westman has some great YouTube videos. I hope you give them a go. Thank you for asking about my as you put it, “media outreach efforts.” I have had initial meetings with leaders in my area of focus and will be having another meeting at the end of summer to plan how to best proceed. The vast majority of outreach efforts are unsuccessful and immensely time consuming. I’m realistic about that. But I’m not deterred. I’m taking a measured and strategic approach.

cheryldc profile image
cheryldc in reply to pdpatient

Hi pdpatient, my MDS recently diagnosed my foot tremor and spasms in the foot as diphasic dyskynesia. I am taking Rytary 145 3X day along with 1/2 C/L 25/100. I've been very encouraged by your observation that the Metamucil has evened-out and virtually eliminated the dyskynesia for you. Is that still the case? I'm encouraged and would like to try it.Thanks, Cheryl

Mogul1 profile image
Mogul1 in reply to pdpatient

Great info! Have you tried just psyllium powder? No aspartame please. Amazon.

pdpatient profile image
pdpatient in reply to Mogul1

Mogul1 , I have not, but a great suggestion. I will follow up. Thank you.

RKM

Gioc profile image
Gioc

Good old Psyllium, very elegant and common plant, but I've always weed it. I guess I make him my apologies.

luirig.altervista.org/flora...

Very interesting. Thanks.

ConnieD profile image
ConnieD in reply to Gioc

Thank you again, you did mention Rytary in a previous post,my apologies,not quite awake here yet. Once again grateful for this community!

Cagey84 profile image
Cagey84

Also known in the UK as ispaghula husk, the active ingredient in Fybogel

Juliegrace profile image
Juliegrace

???

pdpatient profile image
pdpatient in reply to Juliegrace

The post you just replied to, @juliegrace has a typo. I think that @akgirlsrock meant to say "and not" 🤗

RKM

Juliegrace profile image
Juliegrace in reply to pdpatient

I realize that, I thought she might want to correct it.

kevowpd profile image
kevowpd in reply to pdpatient

Are you aware that you dont need to call people out using @? Everyone using the website (on desktop or mobile) can see who is being replied to.

pdpatient profile image
pdpatient in reply to kevowpd

Sorry didn't realize that it might be annoying. It's a habit long ingrained. I will try to refrain 👍

RKM

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