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Parkinson's Movement
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Evidence for supplements?

I suppose the title of the post says it really! Like everybody else, I spend lots of money on NAC, Alpha Lipoic Acid, Co-enzyme Q10, Resveratrol etc etc. I'm about 2 years in and feel okay but the disease is progressing slowly despite all of my strategies. Therefore, I ask myself, is there any point in these supplements? Is there any scientific evidence to support the claims and if so, does oral ingestion make them significant? For example, I was reading a study done for instance on NAC and the lead scientist declared that for it to make any difference to Parkinsons it had to be administered intravenously. Any thoughts welcomed. Hope that you're all doing as well as can be expected.

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Supplements, This is the biggest disappointment. I am not now taking, nor do I intend to ever take again any supplement that is not prescribed by a medical doctor . I have tried and tested many, spent hours reading and huge dollars at the health food store, all wasted. ( If the only place you can get it is at the Health food store or from a guy behind the pool hall, do not buy it.)

The purveyors of miracles from snake / coconut oil to Q10 will have to get their money from somebody else. (and I am sure they will )

Baby Boomers , we can buy our way out of anything except mortality. I am on the leading edge of the boom, millions more are coming, PD is growing and they are all ready to spend. Health food stores will be every where for a short time but just Like the store with the red balls in Canada, ( what was their name ? ) they will quickly disappear.

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I am wondering the same after two years of phafing around. Seems like I'm spending a lot if money and energy, yet feel the slow decline. I'm beginning to think excercise, veggies and prescription meds are the way to go.

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I think it would be a mistake to categorically rule out taking supplements. Vitamin D has been hugely beneficial in treating my Parkinson's illness. Four years ago my symptoms were progressing rapidly, foot drag, balance problems, drooling and painful dystonia in my right arm. All of these symptoms improved dramatically and quickly when I began taking vitamin D. I no longer stumble when walking and have not drooled since. I also suffered from chronic insomnia which I don't experience any longer since I take tart cherry juice extract capsules and tart cherry juice concentrate juice at bedtime. Tart cherries are loaded with natural melatonin and tryptophan which are important for natural, restful sleep, thus avoiding pharmaceutical sleeping pills, which can be dangerous and addictive. The mineral boron has significantly improved my arthritic shoulder and I no longer experience pain. For those with arthritis, boron is very effective and very cheap. It also works quickly. Do I still have Parkinson's? Yes. Some supplements can work quickly and offer symptomatic relief. Other supplements may work slowly and their efects may not be as noticeable. Remember, you didn't get Parkinson's overnight, so It may be important not to expect improvement too quickly. I might add that many folks have been taking Mucuna pruriens and prefer it over sinemet. If you think big pharma is going to rescue you with a miracle drug anytime soon, that is afforable, good luck with that one. For me, I'll continue trying and experimenting with supplements. To do otherwise is tantamount to giving up. Imho.

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Interesting. Thanks🙂

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Keep posting- your results are duly noted, @Blackfeather

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Black feather,

I wake up around,4-5 in the morning and have trouble going back to sleep. Do you know if tart cherry juice or tablet would help?

I also have had some form of tendon pain in my right arm on and off for years. Currently, I have been diagnosed w tennis elbow. You say you have distonia. I hate to sound so ignorant, but can you tell me your symptoms? I am wondering if I might be misdiagnosed. At my yearly my doctor said i was low on vi t D.

I also have had terrible balance for the past 2-3 yes. My Dr has put me on sinemet and I have seen no improvement. However I think it gives me brain fog at times. I have not tried adding vi t D yet as I think I get a descent amount of sun exposure.

I take tumeric daily and just started drinking tea with tumeric and ginger. It helps a little during the day.

We have many similar symptoms. I would really appreciate any advice you can give me. Sleeping 5- 6 hours a night and my tendon pain are making me crazy.

Thanks

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Goodman,

Tart cherry juice concentrate is what I use for good sleep. I have tried different brands but I prefer Cherry Bay Orchard. Tart cherry juice is very high in trytophan and melatonin. You can Google tart cherry juice and sleep to see more info on this. I also use tart cherry extract in capsules, and for this I like 1,000 mg capsules from solgar. As for vitamin D, it is very important for brain function and unless you get direct sun exposure on two thirds of your body on a regular basis daily basis, for 30 minutes or so, your more than likely vitamin D deficient. Google "vitamin D and nuerology " to read about the link between vitamin D deficiency and Parkinson's. I take 10,000 iu of vitaminD3 by solgar in a gell cap. As I mentioned, vitamin D literally cured my balance problem and my drooling. So I am a big believer in vitamin D. It also relieved a good lot of pain and contraction I experienced with dystonia. I have dystonia in my right arm, which can be painful because of the muscle contractions that extend down into my hand and fingers. My hand is twisted along with my fingers. So it is a deformity. I hope this helps! Feel free to ask me any more questions you may have.

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Black feather, thank you so much for sharing. Sounds very promising

Do you have any suggestions on how to start with the Tart Cherry Juice and the capsules. Ex 1 cup and 1 capsule at dinner time ?

And should I feel immediate results or does it take a few days to help w sleep and inflammation?

I am also not a very large person so should I drink less(98 lbs)?

Thanks

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thanks for the info! i will tell my mom to try boron for her osteoarthritis of the knee. i have to disagree, though, with your statement that we didnt get pd overnight. some of us did.....i was mercury poisoned by my dentist who removed amalgam fillings improperly. i showed neuro damage within days. most dentists & mds dont (or wont) acknowledge the connection. youre right, big pharma will not come to the rescue. were on our own....

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I am new to this but I appreciate all the advice and opinions. I was diagnosed in June of 2015 confirmed by Datscan results. It took that to make me believe it. I was a 65 yr old man who had never had a prescription drug in my body never antibiotic and never a medical dr other than my company physical. Worked for same company since 1974 and just retired Oct 2017. I began only with symptoms my wife noticed and forced me to see her internalist who sent me to Cleveland Clinic Fl Nero. I had the datscan which proved a 50% dopamine loss. I was devastated as well as my family. I continued to work 13-15 hours daily until I had open heart surgery to repair mitral valve leak in March. I have been a manager for a surface coal mining company for 43 years with no family evidence of PD. I began researching supplements immediately and started on organic Mucuna Puriens powder 1 tablespoon 2 per day mixed with 1/2 cup cranberry juice. Horrid to take that way but was advised it was better observed. I began vitamin B12 shot bi-monthly lots of exercise playing golf on weekends and walking, watching my diet. When my tremor in right hand became noticeable I was prescribed Rasagiline. In August this year I was prescribed Carb/Levo (sinemet) due to increased tremors in right hand moved into left slightly. I continue with the organic Mucuna puriens, b-12, Resveratrol and Vit E. I walk 3 miles per day and swim. I am getting a lot of advice from you all and appreciate you. This is new for me but I need all the info I can get. I see my neuro at UAB twice yearly and in between it is like I am on my own. I have no dyskinesia no depression and most days feel great. I value my Mucuna Puriens supplement and my neuro told me to keep with it. The supplement helps depression fatigue and boosts energy. I also drink a Shakeology daily. It is loaded with fruits and vegetables and also helps with energy. I agree with most that PD is what it is and that is why neuro sees you, prescribes meds and lets you go to figure it out tweaking dosages but state of mind and determination of each individual contributes to better well being. I was preparing to retire and spend the rest of my life boating, playing golf, snuggling with my wife of then 41 years and spending lost time with my children and grandchildren when diagnosed and could have sank into depression but faith and dang good ole family and friends support and determination pulled me through the acceptance issues and today I feel that no matter what, I will get through this. I have changed my Mucuna powder to organic tablets and see no difference compared with the powder. I value all of your opinions and I am thankful that my wife found this site. We all have important experiences and opinions to offer.

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Welcome. I wish you the best.

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Congrats on your attitude!

So, Does your neurologist endorse MP, that you procure in your own? What is your source for MP and how do you know if it’s quality (perhaps a risk worth taking)?

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Yes my Dr approves the Mucuna in a pure form organic supplement. I have done a lot of research on the best to buy and believe that I take the best that I can get. I am doing well with no additional symptoms except slower movements. I get the powder online st Starwest Botanicles and for traveling I use Himalayan organic pure form caplets from Iherb.com

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I also go to UAB. I see Dr. Yucobian. Their answer was more Senimet. Has not worked.

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Hi Blackfeather. My husband cannot walk or even stand because of his Parkinson's. How much Vit D3 do you take daily?

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What time of day do you take your D3, Blackfeather, and do you have it before or after meals? I am now doing John Pepper's fastwalking. I am 82 and he said to begin slowly. I am up to 30 minutes at a time.

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I take vitamin D usually with lunch. I normally don't have breakfast.. O believe most supplements are best taken with food.

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Thankyou, Blackfeather. :-)

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I’m w you, Blackfeather.

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Boron- at what dose and duration did you notice benefit, Blackfeather?

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If a pwp is taking supplements and their progression is being slowed, there is no way to know that. Slowed - compared to what? Keep in mind that assertions that supplements do or don't work are valid only for the person making the assertion since they have no way of knowing what others experience. If you monitor PD forums, you'll easily figure which forums are more research focused and which participants do the most competent research. There, you will find instances of where pwp have found compounds that work for them. A good example, google Parkinson's forums Mr. Fritz TUDCA and you'll find a competent researcher (Mr. Fritz) who has found a compound (TUDCA (a bile salt)) that clearly works for him. Also, on that thread you'll find others for whom it does and doesn't work. I tried it and it didn't work for me.

Studies show oxidative stress and inflammation are present in all pwp, contribute to toxicity and are more pronounced in late stages than early stages. No one claims that these factors cause PD, but the consensus indicates we are well advised to try to minimize their impact.

IMHO, some supplements slow the progression to some degree in some people (because they mitigate factors that become more severe as the disease progresses.)

Longvida formulated Curcumin is a potent anti-inflammatory for the brain (whereas meriva formulation is for the gut.) To be clear, I do not make recommendations because I don't know what is best for others. I only share my research and personal experience. I don't tale Curcumin because I can't take any drug, food or compound which is an inhibitor of the CYP3A4 enzyme which Curcumin is. If you take prescription drugs, it is wise to research possible counter indications with supplements.

I take NAC, Mucuna Pruriens, resveratrol, and occasionally others. I was diagnosed 7/11 and have yet to take a prescribed drug. I shop carefully for price and buy (NAC as a) powder (from Nutrivita) whenever the dose doesn't have to be precise. I don't believe NAC has to be taken IV.

I use Google Scholar a lot and Longecity has good, research focused forums.

PS All of us get frustrated because we'd like to take a pill and make it go away.

Hang in there.

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I also have to avoid Curcumin due to a homozygous variant on CYP3A4 which inhibit enzyme production.

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Thanks for the sound (generic) analysis and mention of resources.

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Great info, balanced and reasonable, MB! I have been taking high dose B1 THIAMINE HCL and Glutathione Injections for 2 weeks now, carefully watching for any “changes” and if nothing else, understanding that some benefits are not seen or felt—cellular changes . I keep researching and consulting w professionals to fortify my understanding. I enjoy your cautionary advice and experience. -Amy

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Sounds like you probably don't live in the US?? I don't know if doctors are too keen on prescribing thiamine injections here. At least, the VA won't do it. Seems like everybody's getting injections feel good about the results. Keep us posted.

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Whoops. I just looked at your profile and see that you are a retired naval officer in North Carolina. Thank you for your service. Do you have your thiamine prescription from a private doctor or the VA?

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Oral intake of curcumin markedly activated CYP 3A4: in vivo and ex-vivo studies.

Sci Rep 2014 Oct 10;4:6587.

ncbi.nlm.nih.gov/pubmed/253...

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Interesting, I remember reading that curcumin inhibits CYP3A4. Does it mean that it is Ok to take curcumin if you have homozygous (inhibited) CYP3A4?

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Hmmm... Thank you for this. Just proves for any study that says one thing, there's a study that says the opposite.

sciencedirect.com/science/a...

onlinelibrary.wiley.com/doi...

Support as anti-inflammatory

online.liebertpub.com/doi/a...

It'll take me a little while to evaluate your link. I haven't brought the jury in, for myself, on Curcumin. I hope it turns out it doesn't inhibit 3A4 and I can get over the other hurdles in my link. I'd like to be able to take it. There is also a school of thought that purports that just as L-Dopa works better when taken as Mucuna Pruriens, Curcumin works better when taken as Turmeric Curcumin. Have you read that?Anay other info would be welcome. Thank you.

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The effects of omega-3 fatty acids and vitamin E co-supplementation

on clinical and metabolic status in patients with Parkinson's

disease: A randomized, double-blind, placebo-controlled trial.

ncbi.nlm.nih.gov/pubmed/283...

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Carnosine [corrected] increases efficiency of DOPA therapy of Parkinson's disease: a pilot study.

ncbi.nlm.nih.gov/pubmed/187...

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This is a vast subject because science is scratching just a tip of the iceberg in human biochemistry. So many new substances and compounds are yet to be discovered and the ones we now assume to be beneficial may prove to be harmful tomorrow as is it was the case with supplementation of calcium, beta carotene, etc.

Also, there is always a risk of heavy metal contamination and inclusion of all kinds of fillers, binders and flowing agents which might be toxic. We don't know how fresh the products are and the storage conditions. As soon as something is extracted or ground it is subject to oxidation process which to some degree can counteract the benefits.

On top of all this, there is an individual biochemistry. I've been looking into genetics for the past 2 years after my son developed a mental disorder (seemingly overnight) and found out that some genetic variants call for a certain vitamin/nutritional support, but for a different gene variant in his genetic report this very vitamin was contraindicated. So after spending big $$$ on doctors, tests and supplements I am still not sure what is good and not, especially that some substances can undergo change during processing, as the case with algae - fresh algae plants contain real vitamin B12, but dried algae contain only pseudo-B12 which can block absorption of the real B12.

So, having said that, I still take supplements because our food supply is depleted in minerals and I feel that some of them are essential, especially magnesium and zinc, as well as vit. D, K and B-complex (to keep homocysteine from being elevated). I also take probiotics - fermented foods would be a better choice but I have issues with clearance of histamine and have to avoid aged and fermented products. Haven't tried NAC yet, although purchased some a while ago.

There is still a lot of homework to do even with this limited list of supplements because they come in different chemical forms which can affect methabolic pathways in a different manner.

There are so many aspects to this subject, it is like a bottomless pit trying to figure it out - takes way too much time and after doing all the research you finally realize that there is no magic bullet and the best thing is to focus on basics - limit toxin exposure, get enough sleep, and do some fun activities to keep you sane.

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Thanks very much🙂

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Well said. We all stand a better chance if we keep sharing our research and own experience with food, drugs, and supplements.

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Research ? This is not research.

It is false hope, the money better spent,

The hope better placed

Baby Boomers , just throw more money at it or form a committee or maybe a club to raise money, go to Mexico, buy a miracle.

One can not deal with reality until we face it head on and denial has many forms.

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Why are you angry at us? We're just trying to help each other out.

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I am not angry

The search for a magic cure is not an innocent game . It gives many false hope. It costs money and may be dangerous . It uses energy that could be used to plan and facilitate change that will be needed. It leads to ever more serious searches and paths. The street drug called Ecstasy is very available and very dangerous and is now being tried by many Parkies.

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Everyone knows there is no magic cure. That's not what we're looking for. We're just trying to make the best of a bad situation. Even if it is all for naught, it keeps hope alive and without hope we wither. I said merely, "IMHO, some supplements do some good for some people." I would invite you to reconsider throwing cold water on those of us who believe that. it is comforting and healthy to feel part of a community facing down such a challenge together.

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GymBag, why is Ecstasy being tried by parkies? is the medical community testing it?

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absolutely! we know our bodies best. im forever amazed at how many people trust big pharma, and mainstream doctors & dentists (not to mention the gov) to keep us safe from toxins, provide us with safe, useful and affordable medications & find a cure. they are the ones who got us in this mess in the first place. its all about money & power. were on our own to research everything that is recommended to us, and to find safe alternatives whenever we can.

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"Like everybody else"? Not me!

I take one cod-liver-oil capsule daily (because I don't like to eat fish). I eat fresh food and avoid junk.

Generally I find it best to live as well as I can with my PD, without dwelling on it too much.

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A concise review of several supplements.

Management of the aging risk factor for Parkinson's disease.

Phillipson OT.

Neurobiol Aging 2014 Apr;35(4):847-57.

ncbi.nlm.nih.gov/pubmed/242...

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good one

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Most of us are trying to do a cost benefit analysis re supplements because they're expensive, i.e., up side vs downside. The downside is they may do little or no good and we'll spend $$$ for nothing. But, what if in 5 years from now, studies prove unequivocally that 10 supplements make a meaningful difference? If that comes to pass, in part or in whole, foregoing supplements could be a serious regret. 5 years from now, will I rather have the money or my health - for another 5 to 10 years?

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Dear MBA

You have left out one scenario.

What if 5 years from now you have done serious damage to yourself with the "supplements " AND have also spent the money leaving you with nothing .

You and I will not agree. I see it in your name

A cost benefit analysis ? Why of course , every Boomer knows you can buy your way out. All that we need do is throw some more money at it.

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Good point. Possible, but there are enough studies now that measure safety to make that unlikely.

What is in my name that tells you we won't agree?

"...every Boomer..."?? pretty broad generalization. I'm poor.

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Hi there. Recently diagnosed as stage 3. At the moment take Vit D as a blood test showed I was v low. Black cumin oil and lions mane mushroom. I feel so much better. Am going to keep it at this for a while and investigate things that others use

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PD will always progress, supplements or not. I think the better question is:

How do u want to feel?

I, like Gymbag, would only recommend Dr prescribed supps. As they are regulated...

I recommend going to an Integrative Med Dr

Do blood test to see exactly what u need or don't need

For example, I have celiac. You'd be surprised to learn how many vitamin producers use gluten & wheat fillers

Suppliments are just that ... supplements

They are meant to supplement/enhance the nutrients we aren't getting from diet

And as everyone else says .....

Exercise exercise exercise

Which doesn't have to be tedious/ boring gym workouts

Hike, bike, everyday chores

As long as u keep ur mind & body busy

I hope this helps

Be well

C!

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jeeves19 the simple truth is that there is credible evidence that some supplements help, and not just with Parkinson's, but other issues as well, sometimes related to PD. A simple search on google or this website will provide evidence. For example, I now take a magnesium tablet every night in order to reduce leg cramps at night, and it works for me, and obviously works for the people who suggested it, on this very website. Bee pollen helps many men with enlarged prostate glands, and that is most men over 40 years old. It does not work for everyone, but it helps me, and some others that I have told about it. A combination of curcumin capsules and olive leaf extract can clear up urinary tract infections. This is a better choice than antibiotics which kill all gut bacteria. Hard science has linked gut bacteria to PD, and the idea should be to encourage good bacteria, not kill all gut bacteria. In my country, many G.Ps readily admit to taking co-enzyme Q10. Most doctors who have read about it, end up taking it. Ask your own doctor about this. Regular medical doctors would not take co-enzyme Q10 unless the evidence is there. There is a great deal of evidence that curcumin or turmeric in various forms helps with a wide range of health problems. This is also true for probiotic foods such as plain Greek yoghurt, kefir, sauerkraut, some cheeses, cinnamon, garlic, and some other foods and spices. Many foods can be used as an alternative to drug based supplements, such as beetroot juice, and greens such as spinach for reducing high blood pressure. If your mind is made up, then just disregard my words, and disregard google search results based upon my words, and continue to complain about lack of evidence for supplements. Everybody is different, and supplements that help others, may not be useful to you.

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Respect ✊

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Incredible discussion. I have lots to say but really you've said it all. Our nuerologist push more drugs. I think they prescribe way too much and we're better off with moderation. Keep the sinamet dose low and excercise. Take the supplements that u think are helping. Balance your meds and supplements with good organic foods. Destress your life. Meditate. Sleep well and have fun with others. Give and be grateful. It's better to feel lucky than feel wealthy. So buy a few good supplements and try them. There will be a cure!

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Succinct & inspiring ~👩‍💻~

I'm w Bev !

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I'm resisting some supplements although fascinated/tempted we simply don't know enough of long term negative-unintended impact to other systems in the body.

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Worse than the PD drugs? I doubt it.

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Fairly often we run across comments on the PD forums asserting that supplements do no good or that there is no hard evidence they do any good. The way we know with absolute certainty that some supplements do some good for some people is, all studies aside, based on what pwp say. Over the years, I’ve read hundreds of accounts from pwp who write posts saying, unequivocally, that a certain compound or combination of compounds helped them. There is no shortage of people who say that. Are they all wrong? All of us pay extremely close attention to our symptoms. To ignore these posts is to assert these people are mistaken about their own health/conditions – that they cannot tell when their tremor is lessened. Of course they can. That said, there are studies that confirm some supplements benefit some people. The trick is, same as drugs, what works for one person may be worthless to another person. Its trial and error, just like life.

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I was prescribed Madopar after really bad side effects with pramiplexole. After nearly 2 years I have to yet start taking it. I went to see a leading Parkinson nutritionist. I did blood tests and was prescribed quite a number of supplements. I also take Mucuna Pruriens. Also on request I did metal tests. I was find to have very high levels of aluminium. I drink a lot of volvic water to remove the aluminium. I exercise but neglect my diet somewhat. As I have been pretty stable with only right hand tremors and sometimes voice problems I will keep taking the supplements even if they cost me a lot of money.

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BONZU,

How did you find a PD nutritionist?

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Lucille Leader. Was recommended by a nutritionist I found on Google. Not cheap. But she is world renowned on Parkinson.

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thanks

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Hi ! How do you think you're doing, now..9 mos later ?

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I think supplements have a role but maybe to be used less intensely than some recommend. For example I take a range of them a couple of times weekly now whereas once I took them daily.

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be careful with alpha lipoic acid if you have any mercury amalgam in your mouth (silver-colored fillings). it will disrupt the mercury and it will go right to your brain. the fillings should be removed properly by a biological dentist, and the mercury removed from your body using dr. huggins method in order to prevent any more damage.

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Jeeves, Thanks for sharing. I am right there with you. I am a little over a year with PD and, like you, take numerous vitamins in addition to Azilect. I also take NAC. I exercise. Like you, I see PD is progressing. Though we are starting to see some promising results, we won't see a cure for PD available to us for at least 2 -3 years (I guess) anticipating extensive testing, approvals, etc. What frustrates me is that it moves so slowly.

Where we do see good progress, for example with NAC - an OTC supplement, we can't get too far because we need an infusion of NAC - oral absorption is relatively low (6–10%) and variable. I hear about glutathione injections, which are reportedly complicated and expensive but also that glutathione inefficiently crosses the blood-brain barrier. Yet those infusions are going on. NAC does appear to cross bbb, but I don't hear about NAC infusions-yet. When results are published for current Thomas Jefferson University NAC trial, set for March 2018, maybe we will see NAC infusions available to PwP - maybe. Meanwhile, I dug this up:

"The NAC was obtained from the Jefferson Pharmacy as Acetadote (Cumberland Pharmaceuticals). Pharmaceutical NAC is an intravenous (IV) medication most commonly used for the treatment of acetaminophen overdose. Acetylcysteine is the nonproprietary name for the N-acetyl derivative of the naturally occurring amino acid, L-cysteine (N-acetyl-L-cysteine, NAC). Acetadote is supplied as a sterile solution in vials containing 200 mg/mL acetylcysteine. The pH of the solution ranges from 6.0 to 7.5. Acetadote contains the following inactive ingredients: 0.5 mg/mL disodium edetate, sodium hydroxide (used for pH adjustment), and Sterile Water for Injection, USP. Acetadote doses were prepared for each patient by a trained study nurse. The dose was 50mg/kg mixed into 200ml of D5W infused over approximately one hour 1x per week. Subjects took the 600mg NAC tablets 2x per day on the days that they did not receive the IV NAC."

scienceofparkinsons.com/201...

journals.plos.org/plosone/a...

If anyone has additional info or is participating in the Thomas Jefferson University please share what you know. Love to hear about it!

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Oral glutathione doesn't cross the brain barrier...that's why people get injections....it worked for us.

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Supplements are also my current question. I take my information from a Great British blog scienceofparkinsons.com/about/

I hesitate between:

- Inosine

- NAC

- sulforaphane

- doxycycline

What do you think of these supplements?

Thank you for your inputs

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Sorry Roger, I'm all out of shots😕. You might find a book by Kedar Prased? Useful to read and it's called Fighting Parkinsons with Supplements. Best of luck.

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Thank you Jeeves for rhe book Best of luck Roger

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Vitamin D definitely helps. It is proven scientifically that PWP's are deficient in vitamin D

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I was tested before and after D vitamin supplementation. My treatment was supervised at a megadose of 50,000 IU and brought my level up to high normal within 2 weeks. I felt a lot better (placebo) and know that my system has been primed with a ‘missing’ nutrient.

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I’m in NC (USA) and take compounded Glutatione, not Thiamine by injection. I take 8 tablets of B1 per day for total 4GM mega dose. I am a Vet, too and despite my rating (disability), am seen by civilians and private pay /insurance and consults with a naturopath as well.

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Google Scholar, Longecity and Fritz (TUDCA)- will look up these references , Thx Jeeves

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Hi, I haven't officially been diagnosed with this, it's something the neurologist has mentioned to me & is calling me back for. What I'm about to mention isn't exactly a supplement, (I'm not even sure if it's legal tbh) but I take 3 drops of cbd oil 80% every morning & it's made a huge difference for me!! It's reinstalled just a little bit of that everyday quality of life I'd lost & I would highly recommend.

All the best, Lorna Xx

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Where do you get yours from Lorna?

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I can't read the whole thread, but skimmed again. I think supplements with caution. Broadly I am wary of cavalierly dismissing mainstream medical science and joining the tree-huggers. Equally, I am well aware how much things get locked in compartments. So - here in France, google Parkinsons and the Francophone world won't list sense of smell as a symptom. My neurologist diagnosed PD early (very early, my UK GP still can't diagnose it) but told me my sense of smell would recover. Loss of smell was my primary reason for the referral to him. To be fair, he looked it up in a text book during my consultation, and is now a French evangelist for sense of smell loss being a PD symptom.

By contrast, 45 years ago, the 12 year old French exchange girl staying with us at the time asked us to get her some yoghurt when the UK GP prescribed antibiotics for an ear infection. It is not uncommon to see French pharmacists prescribe probiotics with antibiotics because of knowledge of the damage systemic antibiotics do to the gut microbiome. Unfortunately, ignorant of the purpose, we bought her fruit flavoured Ski - very unlikely to have any live bacteria in it. Enough waffle - I'll post separately about my supplements

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Supplements 2. One of the things that turned me cold about Colin Potters site, was the "and another thing" approach. It seemed a huge grape-shot approach. "I've found another thing - add that to the list". (I did find his comment " If you have PD and are offered a glimmer of hope..." resonated however)

Of course we all face the dilemma that every day passed waiting for proof is a day of progression in a progressive neurodegenerative disease, and possibly irreversible further neuron damage. (And referencing one earlier post I skimmed, I think it will be more than 2-3 years before a cure arrives. Lead times suggest 10 years if its sitting on the lab bench today). So, that sense of urgency means I am not in a position to carry out controlled tests to see whether any or all of my supplements are unnecessary. In the absence of a suggestion of harm, I am superstitiously inclined to carry on backing an apparently winning team. But I realise there is a dollop of faith in this approach. At least its only half a dozen... so far!

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