Medicine/Supplement Regime (Mucuna etc)

[pdkid]

I just thought I'd share my dad's current medicine regime in case it will help other people.

After so many months of trial and error, we have finally found a dose that works for my dad. He takes it every 2 hours and 45 minutes with little freezing, has less dyskinesias, not much pain, a better appetite and no more shortness of breath issues (a form of breathing dyskinesias). His nightmares are gone (and with reduction of his neupro patch from 16mg to 12mg, his hallucinations are gone and he's sleeping better). Prior to this, this neurologist was recommending that he take 2.5 sinemet (100/25) tablets every 2.5 hours. This did not work. It was taking 30-40 minutes to kick in and lasted less than an hour. This is when we started turning to mucuna. So since January, we have reduced his sinemet intake from 17-20 tablets down to 5.5 a day (this needs to be done carefully and slowly!!). We are working to further reducing his sinemet in the coming months. My dad is coming up on 14 years of being diagnosed. He is waiting for surgery, which would help him the most. I'd like to add that LSVT BIG, a specific physiotherapy program for pwp, recommended by Dr. Jeanmonod in Switzerland has been extremely beneficial for my dad (why hasn't anyone else recommended this to him?!?)

We are still slowly adjusting this schedule, including slowly further reducing his sinemet and increasing his B6. Also, these measurements could still be a bit off, and we are still slowly doing some trial and error, but this is the first time in a while that he hasn't experienced 20-30 minutes of freezing between each dose. He currently has no freezing, or only a few minutes of it at a time. Also, 8 grams of mucuna is quite cumbersome to consume 6 times a day, so we are going to try Hormone Synergy's 60% mucuna extract to help reduce some of the mucuna powder intake. Dopaboost works for my dad but its not sustainable (1 bottle would only last 10 days), and for some reason, Barlowe's 40% causes him pain in his right shoulder. This formula partially mimicked Dopaboost.

Remember, everyone is different! And you need to consult your doctors as much as possible but you also need to do your own research, research, research!

MEDICINE/DOPAMINE REGIME

(Every 2 hours and 45 minutes; Meals 30 minutes after doses; Protein intake is measured and kept to minimums):

FIRST THING IN THE MORNING 5mL of CBD 


Dose One: 1 Sinemet, 8 grams of Mucuna, 1 gram of Matcha Green Tea + Tyrosine (500mg) + Quercetin (500mg)

1.5 hours after dose - B6 (100mg)

Dose Two: 1 Sinemet, 8 grams of Mucuna

Dose Three: 1 Sinemet, 8 grams of Mucuna, 1 gram of Matcha Green Tea + Tyrosine (500mg)

1.5 hours after dose - B6 (50mg)

Dose Four: 
1 Sinemet, 8 grams of Mucuna, Tyrosine (500mg) + Quercetin (500mg)

Dose Five: 1 Sinemet, 8 grams of Mucuna, 1 gram of Matcha Green Tea + Tyrosine (500mg)

Dose Six: 1/2 Sinemet, 8 grams of Mucuna

SUPPLEMENT NOTES:

(People need to do their own careful, extensive research before taking anything!! Also, be patient in introducing new supplements and in seeing results)

CBD

- half life is 1-2 days

- acts like grapefruit juice: inhibits CYP3A4 that breaks levodopa down in the body, so less dyskinesia, but also, more levodopa gets to the brain

- PD Therapeutic Dose: 75-300mg/day

medicalnewstoday.com/articl...

Green Tea Extract

- Over 800mg /day is bad

- Half life is 3-5 hours, peaks at 30-60 minutes

- Different for plain green tea, which is less potent than the extract (one pill is like 3-5 cups of tea)

- Helps mucuna cross blood brain barrier

- Mitochondrial health, Intracellular signalling pathways, Anti-aging agent

B6

- Only take pyridoxal-5-phosphate kind\

- Take at least 90 minutes away from sinemet, ideal if 2 hours

- Carbidopa depletes B6 in brain so necessary to take to maintain delicate brain amino acid balance, necessary for functioning

- Seems like we need to be taking as much B6 as we do carbidopa

Tyrosine

- Maximum upper limit is 500mg-2grams a day (some pwp seem to take more)

- Avoid taking at night

- 200 mg of vitamin C helps with bioavailability

- Building block for dopamine, epinephrine, norepinephrine and thyroid hormones; Replenishes cognitive resources used in memory

Quercetin

- Half life is 3.5 hours

- Doses greater than 1gram a day can cause kidney damage

- Improves L-Dopa absorption

- Has ComT activity like Entacapone

- Reduces mitochondrial dysfunction, Reduces neuroinflammation, Protects dopaminergic neurons from degradation, Protects cognition, Protects from EGCG damage (stuff in green tea)

Other supplements my dad takes: iberogast, probiotics, aloe juice, digestive enzymes, liposomal vitamic c; B12, D3, dhea, homocysteine factors, liposomal glutathione, omega 3, HDT B1, lithium orotate, magnesium complex, melatonin (w/ cbd), lion's mane.

A FEW OTHER PERSONAL NOTES:

- I am grateful for this forum and the people who have been generous with sharing all their experiences and knowledge. Also, for the internet

- I still can't believe that my own research has helped my dad more than his two different neurologists, family doctor and naturopath, and I continue to be really annoyed with the western medical system (as great as it is) and capitalist pharmaceutical companies.

- I am disappointed and upset that his sinemet is covered, but we have to pay for the mucuna and all the supplements that help him so much more. (I feel lucky that though we are not wealthy, we can actually afford these... but it sure does add up, especially since these supplements are like water for him, very much needed)

- I am really frustrated that its difficult to source some of these supplements in Canada. Mucuna is really hard to find in powder form. Mucuna in extract form is not available here. Lithium Orotate is not available here. HDT B1 is not available here. I can get mucuna powder from two different sources in Canada, but the rest (extract, lithium, hdt b1), cannot even be ordered into Canada. I am grateful and lucky to have friends in the US who order and mail it over for me. I have to look into the laws that keep these specific supplements from coming in.

**JULY 02 ADDITIONAL NOTES:**

- My dad consumes his mucuna doses with lemon water

- I've attached the drawing from Dr. Maldonado's paper that shows sinemet - mucuna powder equivalents

*** MARCH 20, 2021 UPDATE:**

- My dad is now down to 3.5 Sinemet tablets a day! And since coming down to this amount, his recurring shoulder pains have disappeared! Turns out it was the Sinement, not the Barlowe's causing him this pain. We will be down to 3 Sinemet tablets in a couple of weeks. So his updated regime, taken every 2.5 hours (6 times a day) is:

1/2 Sinemet, 1 Dopaboost, 1 Barlowe's, 5grams Mucuna

[parkie13]

Good son.

[pdkid in reply to parkie13]

Even better... I'm a good daughter

(thanks!)

[parkie13 in reply to pdkid]

You are right. Simply wonderful. I have two words– perseverance and love.

[ConnieD in reply to pdkid]

Is your dad having surgery in Switzerland ?

[pdkid in reply to ConnieD]

Since surgery doesn't help freezing when wearing off, Dr. Jeanmonod suggested that we do LSVT BIG physiotherapy to try and manage my dad's freezing first. He said we could check in in the fall and see if my dad is a good candidate then. I'm hoping that he is!

[ConnieD in reply to pdkid]

That’s good to know thank you!

[John_morris71]

From a daily dose of 17-20 Sinemet tablets to 5.5 - Simply wonderful ! Hopefully, next time when you give us an update there will be more good news and even less Sinemet. Keep it going and best wishes.

John

p.s.

Do not worry about doctors and their dismal approach.

[pdkid in reply to John_morris71]

Thanks for the encouragement, John!!

[pdkid in reply to John_morris71]

We are now down to 3.5 Sinemet tablets a day! (will be down to 3 in a couple of weeks)! Will post a complete update down below... his recurring shoulder pains have disappeared...

[John_morris71 in reply to pdkid]

NICE ! and very happy; less medicine is good.

[albachiara2]

Grazie per la tua disponibilità a condividere i risultati ottenuti con notevole dispendio di tempo e di energie .

[pdkid in reply to albachiara2]

So happy to share - - - I feel like we were able to get to where we are because of other people's willingness to share. Community, baby!

[Juliegrace]

I’m not sure, but possibly for the mucuna doses taken with Sinemet you might be able to eliminate the green tea since the carbidopa is there.

[pdkid in reply to Juliegrace]

This is probably true but we basically found that Dopaboost worked so well for my dad, that mimicking the dopaboost content was ideal. We have been "experimenting" since January, and wanted to do whatever we could to reduce his very debilitating freezing as soon as possible. Also, figured that the green tea has a whole lot of other beneficial things in it that it isn't causing harm. Further, I think having the green tea already in place will hopefully make reducing sinemet easier.

[Rosenmu]

Thank you for the information, I'm a bit sloppy on my time table, especially compared to you. I know how much time the research has taken you, I do my share of it to know. He must be grateful for your help and you are lucky he is willing to do what he needs to in order to feel better.

[pdkid in reply to Rosenmu]

Omg, feel so lucky that he is willing to do what he needs and what is suggested! And happy that my mom is supportive too. I've been to a few support groups for (adult) kids whose parents have pd and it seems like a lot of others have a lot of trouble navigating close-mindedness and stubborness from either the pd parent or non-pd parent.

[Not4evr]

It's encouraging to know of your dad's improved condition. I congratulate him on having a daughter like you. Could you please tell me what brand of matcha tea do you use ?

[pdkid in reply to Not4evr]

Thanks! He currently uses an organic matcha green tea from Costco. The brand is "elan". I think any good quality green tea should work. If anyone is willing to experiment with different kinds of green tea, this guy at a supplement store once told me that one may be able to buy matcha green tea in bulk at a lower cost from a bakery that makes green tea cakes and other goods. The quality of green tea used in bakeries is a bit lower but may still work.

[albachiara2]

Da quando ho visitato il link che hai pubblicato è come se si fosse spalancato un mondo nuovo davanti ai miei occhi: questo prof. Monaldo mi sembra veramente attento alla salute dei pazienti ed impegnato a vagliare aspetti e cause della malattia che altri neanche considerano! Grazie

[pdkid in reply to albachiara2]

Yes, his work has been really eye-opening for us too. He is based in Grenada and does consulting from a distance. We checked in with him once and he is very thorough and kind.

Here is his email address: [e-mail]

He also has this book that talks about other natural therapies for Parkinson's:

amazon.ca/Natural-Remedies-...

Buona fortuna a te!

[albachiara2 in reply to pdkid]

Non vorrei apparire pignola, ma a volte la traduzione non esprime fedelmente quello che vogliamo dire.

Quando dici “ ci siamo registrati una volta con lui” intendi una semplice registrazione tramite mail, oppure come fanno molti neurologi, prima ti visitano e poi ti seguono facendo la consulenza a distanza. Grazie 😊🌹

[Bron60]

It is clear how loved your Dad is. Well done.

[jeeves19]

Fascinating. These seem to be huge amounts though! How on Earth do you afford it financially? Also. Do you take the Tyrosine and Quertin in capsule or powder form? Thanks and congrats 👍

[pdkid in reply to jeeves19]

Thanks!!

I know, its a lot and it drives me crazy that our medical system will cover the sinemet but not mucuna or these other supplements!! Now that we have figured out a formula that works, I am working on figuring out how to make this as cost effective as possible. For example, instead of using Dopaboost, trying a 60% mucuna extract and separately getting tyrosine, quercetin and green tea will be way more affordable. (We have already stopped using the dopaboost but are looking to reduce the mucuna powder intake. The 60% extract is supposed to arrive today!) (I happen to have a friend visiting his mom in the US right now. If the extract works, he is going to bring a bunch of bottles up for us to Canada).

We recently switched from Tyrosine capsules to Tyrosine powder, again because of cost-effectiveness. Its way more affordable to buy one of those big cylinders of powder than get the capsules. I guess a lot of body builders use some of the same things that pwp do! I now have to source Quercetin in powder form. My dad has a little scale that he uses, and prepares all his powder mixtures into their own containers, the night before for the next day. I forgot to mention that he drinks his powders with a glass of lemon water.

[pdwife41yrs]

You are an amazing daughter... God bless you! Thank you for sharing.

[pdkid in reply to pdwife41yrs]

haha thanks mom

[rebtar]

I'm curiousw what the original mucuna brand is that you've been using, where you need to use the 8 gram dose? What is the l-dopa concentration in it?

[pdkid in reply to rebtar]

The mucuna powder we use is a no-name brand, just raw mucuna powder from a distributor here in Toronto. I think for raw powder, the L-Dopa concentration is an average of 5%.

sunrisebotanics.com/product...

According to Dr. Maldonado's studies, 250/25 Sinemet = 30grams of mucuna (1000mg levodopa, at 3.33% l-dopa).

I think a lot of studies say that part of why western doctors and neurologists don't recommend using raw mucuna powder, is because the l-dopa content isn't always consistent, ranging from 3%-7%. They recommend using mucuna that clearly states the l-dopa content, which obviously makes a lot of sense. This source we found seems to be consistent for my dad. It is also more cost effective than zandopa. They did once give us a batch that was sandier in texture and more difficult to consume, but they exchanged it.

[faridaro in reply to pdkid]

I think you meant to say 30 mg of mucuna not 30grams

[pdkid in reply to faridaro]

I definitely meant 30 GRAMS !

I attached the image at the top of this post!

[faridaro in reply to pdkid]

Saw it - thanks!

[Farooqji]

Thanks for the detailed information. You are great as you take so much pain for your father's well being. The information about CBD that it actually can be used as alternative to grape fruit juice is new to me. I am interested in knowing the source of CBD oil and the timings of its use

[pdkid]

Thanks Farooqji... I feel like I have become some kind of PD amateur naturopath! (as have many people on this forum). I don't have the links at the moment, but I do have notes that I have taken based on what I found: therapeutic dose of CBD for Parkinson's is a wide range, 75-300mg/day.

I don't remember what the half life is CBD is, but my dad takes it first thing in the morning, in the afternoon around lunch and then in his CBD/Melatonin blend at night. Because there is no THC in it, it doesn't make him high at all. You will have to experiment a bit to see what works for you. I did find this CBD calculator, though not sure how accurate it is. There must be others: cbddosagecalculator.com/start/

We get ours from a company in the west coast of Canada. Its pure CBD: motacannabisproducts.biz/sh...

[pdkid]

UPDATE:

My dad is now down to 3.5 Sinemet tablets a day! And since coming down to this amount, his recurring shoulder pains have disappeared! Turns out it was the Sinement, not the Barlowe's causing him this pain. We will be down to 3 Sinemet tablets in a couple of weeks. So his updated regime, taken every 2.5 hours (6 times a day) is:

1/2 Sinemet, 1 Dopaboost, 1 Barlowe's, 5grams Mucuna

He reduces the Mucuna in the later doses to lessen the dyskinesia at the end of the day.

[KERRINGTON]

Thanks for all your information. I frequently read it. I have noticed a difference between Barlowe's white and brown mucuna, with the brown being more effective, but harder to get... Are you off the lithium ?

[pdkid in reply to KERRINGTON]

Interesting, I think my parents currently get the white but I'll get them to try the brown. My dad has been on Lithium all year and is currently taking a break... not good to mix Lithium with psilocybin... currently on a 5 week microdose schedule that will end soon. What is your supplement schedule?

[parkinsonshereandnow]

pdkid, it is a privilege to read you.

I find what you do and write brilliant and inspiring.

Thank you for sharing it.

Dr. Gonzalez Maldonado seems to me the most important popularizer I know in the entire modern history of Parkinson's disease. His "Heterodox treatments..." helped me to wake up.

Thanks a lot.

Jesus

"It is not healthy to be well-adjusted

to a profoundly sick society."

Jiddu Krishnamurti

[pdkid in reply to parkinsonshereandnow]

Thanks Jesus! I am looking forward to checking out your book... so incredible that it is out for free. Thank you!!

[PDFree]

Thank you! You're a saint to be helping your dad like this and informing all of us about your experiences. I am wondering how you came about adding, and how much to add, of the tyrosine and quercitin? Is it because they are in Dopaboost? Are they both powders? I have been using mucuna for a long time, and take a rather large dose of it like your dad, but just learned about adding matcha to it, and possibly those other two things. I'm going to try the matcha for sure. I think I'm also going to order Gonzalez's book, it sounds like it could be quite helpful.Is your dad also taking B1? Dose, and frequency, if so?

I'm also curious what you think it is you are doing that is lowering his dosage needs for some of the things he is taking?

Thank you pdkid.

[pdkid in reply to PDFree]

Awh, thanks Yes, exactly, we came to the tyrosine and quercetin additions based on the dopaboost. The tyrosine is a powder (amino acid) used by others for other things like body building and the quercetin is in capsule form, used by others for things that include anti-histamine. For sure try the matcha! I think grapefruit juice is supposed to enhance it as well. Glad you will get the Gonzales book. There are a lot of really helpful natural remedies found in there. My dad is on B1. We have been gradually increasing... he takes 2 grams in the morning and 1.5grams in the afternoon. He does this everyday. I believe it is helping him.

I think replacing the Sinemet for the mucuna / dopaboost has been allowing him to reduce his sinemet. The mucuna is just so much more effective for him than the Sinemet. He currently only uses the Sinemet for the carbidopa to help get the mucuna through the BBB. I think the tyrosine and B1 is helping too.

Best of luck, PDFree!! (apologies for the delay in responding!)

[Scrudgie]

Thanks so much for this in depth account of your care plan!! I share your frustrations with the health system’s approach and lack of support for herbal/so-called alternative medicines. I’m going through all the posts and doing so much online research that I’m slowly becoming a scholar in it... like you☀️! Your dads lucky to have you on his team! I’m still trying to figure out what can be expected from an effective regime... will He be able to walk around the block again? Currently, walking down the street past 3 houses and back is the limit (and very unstable). Thanks for the reminder to be patient... it’s tough to wait.

[pdkid in reply to Scrudgie]

Awh, thanks!! Yea, its amazing how we have become some degree of a naturopathic doctor! Overall, yes, my dad is able to walk around the block... last summer he even took a long hike in the woods with me, I was impressed! He is also in better spirits because he isn't freezing as much, isn't experiencing sharp shoulder pains and isn't hallucinating or having vivid nightmares. I think his mood is also certainly better because of microdosing on psilocybins. Do you have access to a treadmill? I heard that that helps a lot with balance. Wishing you the best on your journey. Staying patient and positive for sure will only help

🌸⭐

[Scrudgie]

Can you tell me more about the microdosing amount, what form, when he takes it (day or night), how often etc? My partner is interested in that!

[pdkid in reply to Scrudgie]

I wrote a whole post about it here!

healthunlocked.com/cure-par...

There is a link in that post that will lead you to a site with a lot of info, including how to properly microdose. There are currently two protocols that are most prevalent: Fadiman's and Stamets'. Fadiman's is the one we have used and works great. It is one day on, two days off, for 6 to 8 weeks. After that, there should be a minimum of 2 month break. The microdose amounts vary from person to person, but generally is 100mg (0.1 grams). Stamets' is more intense, recommending four days on and one day off (I think). I don't recommend this, especially if you are just starting out! I think Stamets' suggestion though, of including Lion's Mane (a mushroom that apparently promotes the growth of neurons) and Niacin (to increase bio-availability) to your microdose schedule is worth trying.

It doesn't always work for some, but when it does work, its amazing.

[Scrudgie]

Thanks so much!! Very helpful! I appreciate your time!!

[Hidden]

This is such a helpful post! Thank you!