The BEST supplements : When you read... - Cure Parkinson's

Cure Parkinson's

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The BEST supplements

Discogs_discogs profile image

When you read through NIH studies, you can easily find 100 supplements to take for PD. It's confusing and it is overwhelming. It is impossible to take 100 supplements anyways. Even this forum is overwhelming with all of the suggestions on here.

Ultimately, my question is this: Can anyone offer a short list of supplements which are tried-and-true to slow the progression of PD? Is there a supplement or two which you absolutely swear by - - one which you are positive has helped your symptoms and/or reversed PD progression (not including the obvious one, thiamine)?

59 Replies

My list of interventions that may help reduce progression. Thiamine, exercise and cinnamon particularly helping me:

• Vigorous daily exercise

• High-dose thiamine, courtesy of Dr. Antonio Costantini highdosethiamine.org/ healthunlocked.com/cure-par...

• Cinnamon, extensively researched by Prof. Kalipada Pahan, PhD. My report healthunlocked.com/cure-par...

•Mannitol parkinsonsnewstoday.com/202...

healthunlocked.com/cure-par...

• Ambroxol healthunlocked.com/cure-par...

jamanetwork.com/journals/ja...

Hello park bear. Most people whom I've read received no benefit from mannitol. Only a small minority did, based on my limited reading. Did it truly work for you? I seem to recall a post in which you mentioned that it got your energy back (no fatigue), but nothing else?

No, I was never able to give mannitol a proper try because it caused me uncomfortable blurting and excess gas. I have included it on the list because of reports by some that it did help them.

It helps me. It's cheap, so always worth a try especially if you are constipated with a loss of sense of smell

Nothing is generally accepted (which I infer 'tried-and-true' to mean) to do what it is you are after. You have to make your own calls.

The niacin B3.

frontiersin.org/articles/10...

Lizzy9 profile image
Lizzy9 in reply to GioCas

From what my little brain could gather from this article, it sounds like niacin should definitely be in the PD stack. Thank you for sharing this!!! (I have recently started my HwP on TruNiagen. Hopefully time will tell if it’s worth th me cost!)

GioCas profile image
GioCas in reply to Lizzy9

Here we talk about vitamin niacin b3NA. (NA nicotinic acid).

I had to study a lot to understand the difference between the forms of vitamin B3.

In my opinion the best is Niacin B3NA taken a single dose of 100mg to 250mg (your choice) is the best form.

some links for any newbies:

scienceofparkinsons.com/201...

scienceofparkinsons.com/201...

mdpi.com/2072-6643/13/1/28/htm

faridaro profile image
faridaro in reply to GioCas

There is a very good book "Niacin: The Real Story: Learn about the Wonderful Healing Properties of Niacin" by Abram Hoffer. It covers different forms of niacin with the exception of nicotinamide riboside, if I remember correctly.

GioCas profile image
GioCas in reply to faridaro

Thanks Faridaro, your great knowledge is equal to your willingness to help and this is the responsibility.

faridaro profile image
faridaro in reply to GioCas

Thank you Gio for your kindness and also willingness to share your knowledge - I always enjoy your posts. We are so blessed to have this forum and to know that there are kind caring souls out there willing to help each other in this battle we are going through.

Lizzy9 profile image
Lizzy9 in reply to GioCas

Thank you!! I started reading these this morning and I saw that I need to print them off!! A lot of information!!! I would love to find a form of niacin that wasn't so expensive, but both my HwP and myself have had the "Niacin Fire"!! Neither of us like it so that is why I have him on TruNiagen. But I wonder if it is really worth the high cost?!?

Anyway, thank you a ton for the links!!!

Have a fabulous day!!!!!

GioCas profile image
GioCas in reply to Lizzy9

the "niacin fire" is the fun part or not? :-)

, however, it tends to disappear over time (more or less a week) at a constant daily dose without interruption or increase.

Lizzy9 profile image
Lizzy9 in reply to GioCas

I kind of lost enjoying the "niacin fire" the last time I took niacin. I had been taking it for a bit slowly increasing it, but the last time the "fire" lasted a little too long ~ about an hour. I can't remember now what I was doing. Maybe I should start all over again. Just frustrating!

Have a fabulous day

GioCas profile image
GioCas in reply to Lizzy9

Lizzy . I understand you!

In theory and the more reacts the more the dose has reached an area of ​​deficiency. Solving deficiencies of various kinds is what niacin does, it's not just NAD. It is essential for more than 600 enzymatic processes and PWPs are very deficient in it.

Quote: "We previously reported that individuals with Parkinson's disease (PD) present with lower vitamin B3 levels compared to controls. It may be related to carbidopa interaction, defective tryptophan metabolism, and stresses of night sleep disorder. “

But an hour of flushing is annoying.

If one day you want to take vitamin B3NA again I can tell you how I can gradually increase the dose thus avoiding long periods of flushing.

Lizzy9 profile image
Lizzy9 in reply to GioCas

Thank you ~ I would appreciate any niacin “coaching” . I actually thought I was taking it slow enough, but I guess not.

This is what I take daily. There is evidence that each is beneficial. I cannot attribute any specific benefit to any specific supplement. I do not take any pharmaceuticals for my PD, (or otherwise) although I have tried some in the past. My symptoms first showed up in 09.

Exercise = I walk 3 mi/day and do 1 hour of calisthenics, 3 times a week, in a Zoom meeting with a VA PD physical therapist, plus 1/2 hour in the gym 5/week, but I should do more.

Diet = Mediterranean

Sleep hygiene

Intermittent fasting = 18 - 22 hours/day, 5/6 days/week.

Red Light Therapy = Coronet Duo

Niagen = nicotinamide riboside

Lithium Orotate = 20 mg/day

Multiple vitamin, whole plant, one per day with meals

EGCG = epigallocatechin gallate, green tea extract

Melatonin; 20 – 40 mg/day at bedtime.

Turmeric curcumin

NAC

DHA = Omega-3

B1 1g/day

Vitamin D = 5K – 10K IUs/day

Quercetin

Super B Complex; 100 mg. 2/week

Magnesium L-Threonate;

MB Anderson, can you point to any particular one or two of these supplements that you specifically recall made a difference?

No, sorry, I cannot. I think the most important factors are my diet, exercise, sleep, and fasting.

kevowpd profile image
kevowpd in reply to MBAnderson

PTT doesn't warrant a mention...?

MBAnderson profile image
MBAnderson in reply to kevowpd

Thank you for reminding me. Considering the cost, you would think so.

Discogs, I have had bilateral PTT, but it is not supplement I take every day.

Fascinating! I must look up your experience with PTT on other posts here on health unlocked. I assume that your recovery and success has been discussed there before, so I don't want to digress too far off the topic of supplements here. Still, I would love to hear whether you recommend PTT (and especially bilateral PTT) based on your experience and post - recovery lingering symptoms. I will post a separate question on an older thread if I can find one. Bilateral PTT must be rare on here, isn't it?

look under my profile. You'll fine post there ad nauseam.

What is p t t?

As for your Mediterranean diet, doesn't Dr. Laurie Mischley recommend eating no meat at all? The Mediterranean diet has lots of fish in it. I recall at least red meat appearing as something that accelerated PD progression in her presentations, but I cannot recall what she wrote about other types of meat. I read somewhere (I can't remember where now) that total veganism is recommended for PD.

You may be right about veganism but, I LUV Salmon.

Here it gets tricky because there are doctors, nutritionists, scientists, and data that supports every diet ever conceived of and it’s well beyond most of us to know with absolute certainty which one is best, so we’re on our own here, which is too bad because diet is as important as sleep and exercise. Further, since we are all different, especially the composition of our microbiome, there may be no such thing as a one-size-fits-all best diet. I believe the Mediterranean diet, minus wheat, dairy, gluten, and sugar is best for me.

Dr. Mischley’s recommended diet includes eating fish. Basically vegan plus fish. Although eggs are neutral. She has points associated with different food groups. Highest points go to fresh fruits and vegetables and grains such as farro, teff, quinoa, buckwheat.

Lizzy9 profile image
Lizzy9 in reply to MBAnderson

Hello MBAnderson ~ I was wondering if you were taking TruNiagen and if so why that particular one and is it worth the high cost?

Thank you for your help ~ Gail

MBAnderson profile image
MBAnderson in reply to Lizzy9

Gail,

I think the brand is TruNiagen.

I think nicotinamide riboside (NAD+) is important, but it is expensive. I don't take it all the time. I probably take it half the time. (I don't take any of my supplements religiously.)

"In addition, we have reviewed newly published research on the application of NR as a potential therapy against infections with several pathogens, including SARS-CoV-2. "

pubmed.ncbi.nlm.nih.gov/324...

Lizzy9 profile image
Lizzy9 in reply to MBAnderson

Hello MBAnderson ~ TruNiagen is what I just started my husband on ~ very expensive!! I give him 600 mg/day. I was wondering why you only take it half the time? This week I am gong to go over those links you posted and see if I can make a more informed decision as to what niacin supplement to give him.

For myself, I recently started taking ATO Cofactors. it's niacin as Inositol Hexinicatinate and has some Ribflavin in it. It isn't quite as expensive.

Again, thank you for your time and help ~

Blessings ~ Gail

MBAnderson profile image
MBAnderson in reply to Lizzy9

Thank you for the tip. I suspect that if you take any supplements over long period of time, and I have taken niagen for several years, you are getting enough.

Lizzy9 profile image
Lizzy9 in reply to MBAnderson

Good thought!! I’ll keep that in mind!! Thank you!

I am a believer in melatonin and it has 6 studies to confirm its benefits in people with PD at 2 mg to 50 mg/day.

pubmed.ncbi.nlm.nih.gov/324...

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

pubmed.ncbi.nlm.nih.gov/335...

pubmed.ncbi.nlm.nih.gov/324...

pubmed.ncbi.nlm.nih.gov/327...

pubmed.ncbi.nlm.nih.gov/290...

Quote from study #1 that used 10 mg/day :

>>> ' Overall, melatonin supplementation for 12 weeks to patients with PD had favorable effects on the UPDRS part I score, PSQI, BDI, BAI, hs-CRP, TAC, GSH, insulin levels, HOMA-IR, total-, LDL-cholesterol, and gene expression of TNF-α, PPAR-γ and LDLR, but did not affect other metabolic profiles. ' <<<

Quote from study #2 that used 50 mg/day :

>>> ' At the end of the trial, in patients who received melatonin, we detected a significant diminution of lipoperoxides, nitric oxide metabolites, and carbonyl groups in plasma samples from PD patients compared with the placebo group. Conversely, catalase activity was increased significantly in comparison with the placebo group. Compared with the placebo group, the melatonin group showed significant increases of mitochondrial complex 1 activity and respiratory control ratio. The fluidity of the membranes was similar in the melatonin group and the placebo group at baseline and after three months of treatment. In conclusion, melatonin administration was effective in reducing the levels of oxidative stress markers and restoring the rate of complex I activity and respiratory control ratio without modifying membrane fluidity. This suggests that melatonin could play a role in the treatment of PD. ' <<<

Quote from study number #3 at 2 mg/day :

>>> ' In this preliminary open-label study, administration of sustained-release melatonin 2 mg was found to be safe for clinical use and was associated with significant improvements in night-time frequency and nocturnal voided volumes in PD patients. ' <<<

Quote from study # 4 which also used 2 mg/day in PD patients :

' >>> PRM (prolonged release melatonin) is an effective and safe treatment option for subjective sleep quality in PD patients and beneficial effects on sleep quality are associated with improved non-motor symptoms and quality of life in PD patients. ' <<<

The animal studies are able to show significantly more benefit as they use significantly higher dosing with no ill effects. In those studies they are able to show the mitochondria optimizing and protective effects of melatonin as well as protective effects of melatonin on dopaminergic neurons and return of elevated inflammatory and oxidative stress parameters to healthy control levels.

Melatonin has been shown safe in humans at dosing of 250 mg/day (recent studies) in diabetes patients and higher in other studies. Melatonin only has an LD50 that was estimated because no animal has ever died from melatonin at any tested dose. High dose melatonin has also shown in studies to significantly reduce symptoms, cytokine storm, ARDS and death from Covid-19. Melatonin is protective of the heart, lungs, brains, liver and all major organs as proven in multiple studies. It helps prevent or treat CVD, stroke, osteopenia and osteoporosis .

Now we know that we can get melatonin without having to supplement it, by helping the body to produce more of it naturally.

Art

Astra7 profile image
Astra7 in reply to chartist

The past 3 weeks I have been feeling better, even forgetting to take my meds for a few hours and slightly reducing my meds overall.

First reduction in 6 years.

Only 2 things have changed- I’m taking 3mg slow release melatonin every night, and I’m on annual leave.

Next week I go back to work and I will discover which one is the key!

i want to know, too! thanks for posting your question... i already have spent $$$ and have over 40 different supplements!

I constantly try new supplements as I see them recommended on here but my mainstay are NAC, NADH, Mannitol, and B1 and a Melatonin/Magnesium/B6 tablet at night before bed.

When you look for NIH funded studies of supplements, using a randomized controlled clinical trial (the gold standard) , I promise that you won't find hundreds of studies. Not even close. You want to look for studies in humans, not other animals or preclinical trials. I found two randomized clinical trials of supplements for PD , doing a quick look. pubmed.ncbi.nlm.nih.gov/283... and

pubmed.ncbi.nlm.nih.gov/246... . What did I miss? Exercise. There's LOTS of clinical trials showing the benefits of exercise for PwP. For example: thelancet.com/journals/lane...

pubmed.ncbi.nlm.nih.gov/303...

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

And that's just skimming the surface. Exercise is the one treatment modality that appears to reduce PD symptoms.

Probably the most exciting thing happening in exercise for people with PD is Phase 3 study looking at long term effects of high intensity versus moderate intensity exercise. They are even looking at changes in DATScan imaging to determine whether exercise increases the number of functional dopaminergic nigrostriatal neurons.

This "SPARX3" trial is a huge investment by the NIH in understanding how exercise changes PD symptoms. sparx3pd.com/home/volunteer

Thank you, Raphaëkg. I see your point about human trials. Much of what I have been reading about are trials on rats. There are literally dozens of them. With every single one, the scientists chemically induced parkinsonism in the rats, and then proceeded to conclude that a supplement/medication dramatically improved the rats' symptoms. There is no way of knowing whether the rats would have improved on their own after poisoning, and obviously rats cannot be tested according to the uniform Parkinson's scale. I have not read everything that there is to read by any stretch, but I have seen far more studies on rats than on humans within the online publications that I have come across.

..and so far, NONE of the rodent trials even for traditional pharmaceuticals have translated into successful human PD drugs when submitted to randomized controlled clinical trials. Some argue that we should ignore rodent studies altogether. Our brains are too different from rodents. They don't have dopaminergic neurons with neuromelanin. Only humans (and perhaps some very closely related primates) do. So, I basically ignore the rodent research.

MBAnderson profile image
MBAnderson in reply to Raphaekg

When I put "dietary supplements and Parkinson's disease" in clinical trials.gov, it brought up 64 studies. clinicaltrials.gov/ct2/resu...

Here are 3 .

1. “An Exploratory, Randomized, Blinded, Placebo-Controlled Trial of Folic Acid and L-methylfolate in Parkinson's Disease”

clinicaltrials.gov/ct2/show...

2. The Effect of Psyllium and Wheat Bran on Body Weight in People With Parkinson's Disease and Constipation Symptoms (NRO)

“….participants will be randomized to receive 10 grams daily of psyllium, coarse wheat bran, or maltodextrin (placebo) for 8 weeks…”

clinicaltrials.gov/ct2/show...

3. Gut Health and Probiotics in Parkinson's (SymPD)

“This is an exploratory study with a randomized, double-blind, placebo-controlled design…’

clinicaltrials.gov/ct2/show...

Discogs,

I don't pay attention to rodent studies either, but, competent studies of supplements in people do not necessarily have to be limited to people with PD. Considering there are millions of molecular processes going on in our body continuously the vast majority of which are not relevant to and do not affect dopaminergic neurons, but do have an effect on the myriad of other systems and processes.

You're correct to believe that there are hundreds of studies of supplements in people that apply to us.

Marc

I take the following. I can't say for sure they work, but it seems my condition is staying the same. Also, I exercise about one hour a day:

Levodopa Four Times A Day

Rasagiline / 1MG Morning

Omeprazole / 20MG Morning

Simvastatin / 40MG Evening

B12 1,000 / MCG Morning

Multivitamin Morning and Evening

Coq 10 / 100MG Morning

Vitamin B1 / 500 MG Morning

Green Tea / 315 MG Morning

6 omega 3d 2Nac

3 Co Q 10

Vitamin C 1000

D3 10000

2 Turmeric

2Arthritis factors

1 mega Sporebiotic

2 magnesium complex

1dropper of homeopathic adrenal support, 1 dropper heavy metal detox, 1dropper cholesterol high, 1 dropper cortisol high

2 multivitamin and minerals from Nutritional Frontiers

1 super call plus

1 osteo-guard plus ipriflavone Monday, Wednesday, Friday from Douglas labs

1 opti DHA

11/2 c/l am 1 c/l afternoon, 1c/l night (25-100)started in October

1 5mg baclofen twice a day started in December

Been in PT/OT twice a week since September almost finished

Sauna 2 or 3 times a week

The c/l has helped somewhat with muscle rigidity but not with tremors. When the c/l was increased to 11/2 I find my tremors increased in frequency and intensity and I feel more jittery after the morning dose. Neurologist said to stay at that dosage until I see him this month. I also saw a movement specialist. She had no comment about the increase in Tremors in intensity and frequency still looking for a good neurologist I think the combination of supplements exercise and Baclofen and cl have helped. The physical therapy and occupational therapy the really helped me improve. They're both very surprised and impress with a continued Improvement. I also pray a lot

Smittybear7, which brand of heavy metal detox do you take?

I take homeopathic drops from lifespan Health and Wellness Center. Is located in North Huntingdon Pennsylvania. The doctor has a call in radio talk show on Wednesdays at 12 noon. Channel 620 412 825 6262 is the call-in number.

Kelrjd profile image
Kelrjd in reply to Smittybear7

I live in Monroeville PA! We actually see Dr Gerald there, although I've never listened to the talk show

Smittybear7 profile image
Smittybear7 in reply to Kelrjd

Medical wellness?

Kelrjd profile image
Kelrjd in reply to Smittybear7

Actually medical wellness associates in Jeannette PA.

Smittybear7 profile image
Smittybear7 in reply to Kelrjd

I see dr. Gallagher does dr. Gerald prescribe your dosage of supplements?

Kelrjd profile image
Kelrjd in reply to Smittybear7

I've only been there one time. We tried to get in with Dr Gallagher, but he's trying to retire and not taking new patients. Dr. Gerald did prescribe a few supplements for us, my husband and I. I think their supplements are rather pricey, not sure if they're more effective than any others. What's your opinion on that?We've had all of our blood work done, and did the allergy testing also. We go back February 1st for our results. I'm impressed with the practice. I might do the IV chelation therapy, I want to go the food allergy route first

Smittybear7 profile image
Smittybear7 in reply to Kelrjd

Some of Dr Gallagher vitamin supplements are Douglass labs. Winer wellness center in Greentree carries supplements from several companies. They have 30%off sales 5 times a year. The next one will be in March. The main branch is Nutritional frontiers. I still get some vitamins from Dr Gallagher but mostly from winer wellness. I did 24plus IVS of Glutathione and acupuncture treatment at dr Gallagher 's in 2017. Expensive but I think they helped. Sorry you weren't able to get in with dr. Gallagher. He's really want amazing doctor. You can always call the talk show and ask your questions.Winer Wellness Center is located on Baldwick rd in Greentree.

Kelrjd profile image
Kelrjd in reply to Smittybear7

Thank you for all the info! Greentree is only about 20 minutes from our house, it's worth checking out

Smittybear7 profile image
Smittybear7 in reply to Kelrjd

The talk show is Saturday morning from 9 to 11 on 6:20 a.m. phone number for 12825 6262. Very informative

412-825-6262

Thanks to all for your supplement list. Would greatly appreciate it if you can also provide your dosing regimen along with quantity taken per dose. Example: NAC 600mg 11.00 AM

It would help others with reference points.

My HwP takes pretty much takes all the same supplements listed, but the one I see missing that he takes occasionally that helps him feel calmer is L-theanine. I give it to him if he's extra anxious or needs to try to relax. Seems to help.

Smittybear7 profile image
Smittybear7 in reply to PDsux_10

How much ltheonate does he take? Would that help with anxiety during the day?

PDsux_10 profile image
PDsux_10 in reply to Smittybear7

Hi, sorry it's L-Theanine not theonate I wrote the wrong thing. He takes the Solgar brand which is a 150mg tablet and I think it could help with anxiety or if you know you are going to have a stressful time you can take one beforehand. My husband says they help him.

Discogs_discogs I would like to suggest that you compile a list based on all the replies and add that list to your original question which is on the very top of this page.

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