Now you've done it. You've opened a can of worms. Ha. My short answer - both.
The age-old and perhaps most important question, do you start meds when your symptoms interfere with the quality of life or when you're diagnosed? I know the Mayo Clinic along with the major Parkinson organization's position is that there is no reason to delay the use of prescribed therapy, but I still of a mindset to do everything else possible first.
Thanks. I am taking levocarb and Sinemet and supplements. I’m taking 5 levocarb daily and the doctor tells me the maximum is 6 per day. I’m getting close. So what then?
I'm not making the case that it is either or because, in general, supplements and prescribed meds have different missions. Among other things, supplements mitigate oxidative stress and inflammation, correct deficiencies, bolster nutrients, aid in digestion and absorption, etc., etc., etc., and some, such as thiamine/vitamin B1, as has recently been reported here, are, apparently, performing near miracles, while PD meds mostly seek to conserve or produce dopamine. (I just got my two bottles today. Wee-ha!)
hobartpitman, I won't live long enough to read half the research that's been done on supplements and much of it that is relevant to PWP has been posted here. If you take a couple days and cruise around, click on the relevant tag words and titles. Many have posted their regimens and their is a lot of overlap. Because everything works a little different on everybody, like the rest of us, you're just stuck doing some reading and then a lot of trial and error.
After reading all this intelligent discussion my head is spinning. Let’s get back to the beginning. MBAnderson.... how many worms per day are you eating?
I can not understand why anyone would delay using meds. If they improve your quality of life use them. You only have a limited amount of time on this planet. Don't suffer any pain or endure any symptoms that meds can help.
Using supplements.
If you only use supplements you will have to figure out on your own. If you use meds you have highly trained doctors to guide you. Meds that at least go through the process of being tested and approved. Supplements can be made by anyone and you don't know if they contain what they say they have in them. Also Supplements are drugs are not natural and are made by the same people and process that are used to make your meds.
Thanks, I understand what you’re saying about taking Rx. It might be different if the meds would cure the disease. But if my choice is “ if you take ‘xyz’, your tremors will decrease but by taking ‘xyz’, you run the chance of having heart attack, cancer, etc”. Then I may rethink what I take as my quality of life might even get worse.
For me i don't worry about possible bad side effects. If we allow possible side effects to stop us from taking meds we will not take any meds including supplements. We will not drive a car or ride in one because side effects of doing it can be death 1.3 million people die in cars every year 30 to 50 million are hurt. But we still drive. There are possible side effects in every thing we do. Sex can cause a baby. Eating we could choke.
Why does it matter what BIG PHarma does or does not do. If a drug helps then use it.
Why are people who have PD scared of our meds. The concept of not using a drug because it does not cure you come from. When you reach my stage of PD i think you will change your opinion of meds. If i miss a dose i will start hurting i will start to have a panic attack my legs feet and arms and hands will stiffen to a point i can no longer use them. I will completely shut down. With meds i can do any thing i can run a mile or two i can dead lift 415 pounds (my best).
It is clear that taking prescribed meds for you is the right thing to do and you should feel good about your decision, but the analogy of driving a car and taking drugs doesn't work. We don't know for sure that driving a car will lead to a bad consequence. I'm 71 years old and have never had an accident. We do know with certainty that if you take Sinemet over long period of time during which the dose is increased, there will be side effects.
Antibiotics can cure infections and some chemo gives remission of cancer but besides that what illnesses are their cured by meds rather than the meds just alleviating symptoms?
Would you use the same argument for not taking insulin if you were diabetic?
Big Pharma has over a $5 billion advertising budget and not all of that goes to direct to consumer advertising. A good bit of it goes to planting lies in medical journals in favor of prescription meds and against supplements. I documented this extensively here: When Good Doctors Prescribe Bad Medicine tinyurl.com/zvgcu79 and here tinyurl.com/y8m6moaj. Consumer labs is a subscription site that tests supplements. According to their results the vast majority of supplements have exactly what they say they have.
That said, the various levodopa formulations are good for symptomatic relief. They are safe from any serious adverse effects as long as you are also taking vitamin B6, but take it two hours apart from taking a levodopa-based medication.
Carbidopa will irreversibly bind to vitamin B6. So if you do not do anything about it, over time it will destroy the vitamin B6 system. On the other hand if you take carbidopa and B6 the same time, they will bind with each other in the GI tract, thus inactivating both. However, if you take them at different times, the B6 will get into circulation where it is needed. The carbidopa will get mostly used up in the GI tract, where it is needed. The leftover carbidopa that gets into circulation will bind to vitamin B6, but that is okay as long as you take enough vitamin B6. I take 100 milligrams every morning.
Word of caution regarding the following article - Marty Hinz thinks his protocol is the only way to handle the problem, but is only one way to handle the problem:
Thank you.......it seems very interesting to me,,,,,but I have to find someone in Europe (the best in Germany or Switzerland) who is an expert in that protocol.....and I am doubting,....if I will find one single person.¨¨
I am blaming myself, that I went to Dr. Herman in Florida 2016 and not to Dr. Hinz, that would be probably better......., now, I have to see, because financially it's getting difficult...........
But I'm so glad, that I discovered this forum ! Dr. Costantini would I probably not discovered ......and some other things who helps me to have a more realistic view......
I always have to justify my taking of supplements to my colleagues, because they are saying....you don't know what is in it , the label is not good, etc....
To be clear, I believe that if prescribed meds improve the quality of one’s life, they should by all means take them. I am not recommending PWP not follow their doctor's advice, (I don't make recommendations - I only say what's good for me) although this forum is filled with stories of PWP having the misfortune of falling in with truly ignorant doctors, I recognize the sub-Saharan study concluded there is no reason to delay C/L therapy.
Is there a bevy of other studies that draw the same conclusion? Are we making a decision that early intervention levodopa therapy is best based on one study?
There are a lot of people on this forum taking high doses of Sinemet, I daresay a majority of them, who are researching Mucuna Pruriens and otherwise trying to figure out how to reduce their dose. Why not try to figure out how to avoid or delay getting to that point?
I like to think of myself as a person who responds to scientific data, so I don't know if it's instinct or genetic mutation in my lineage or what, but if, and until, I can squeeze by without exotic drugs with serious consequences, I'm going to try.
Now I understand what you meant when I was opening a can of worms. I didn’t realize this would happen. I thought this platform was to help find alternatives. Of course, it’s great to have both point of views.
It is a helpful platform to find alternatives. If we all agreed with each other it would be less helpful. I believe our disagreements are all in a constructive spirit. I can't find out when I'm wrong unless I say what I think and so I appreciate people correcting me. I hope others feel the same way. I do believe we wish each other the best whether we agree on everything or not.
Thanks MB. You say so much of what I feel. I am reassured to go by my gut feeling now. I don’t understand the science and reading research papers overwhelms and frustrates me. I end up with a list (as long as Santa’s naughty or nice)
of more things I must research
if I want to understand.
To keep my sanity, I “step away” from the topic and such forums.
The trials and abstracts are well above my pay grade, too. A lot of people on this forum do a great job of summarizing and simplifying them for us. I do pretty much the same is a lot of PWP. My wife and I have modified our diet significantly. We are about 90% adherents to Ketogenic diet. I've reduced by 90% alcohol, soda pop, red meat, dairy, bread, sugar, lectins, gluten, processed food, and fried food. I've replaced about half my meals with freshly juiced, lectin free vegetable juice. (I've lost a lot of weight which concerns me. I'm down from 210 to 165. I'm 6'2". I wonder, can a person die from being too skinny?) From the reading I've done, not all lectins are bad and I'm not trying to eliminate all of them. I take the usual antioxidant and anti-inflammatory supplements, but mostly I'm working on my exercise. Currently, I walk an hour every other day and on alternate days, I spend 45 minutes in the gym. My resolution is to double that, that is, walk/run every day and spend 75 minutes in the gym every other day. Every time I go for my walk, I try to increase the amount of running I do if even by a 10 or 20 feet, believing that over the course of a few months it will add up. I take extended-release 25/100 Sinemet about three times a week, usually when I go out to dinner or to a social event and sometimes before bed. I was misdiagnosed as having essential tremor in 2010 and diagnosed in July 2011. I feel my progression has been slow and I am very determined and believe that if I can ramp up my exercise, I can stop it. I use voice recognition software because I can't type anymore using the mouse is hit or miss.
😮 your exercise program is impressive. Great attitude! Thank you so much for sharing. I really appreciate it.
Interesting that you only take meds going out. I guess you tolerate the inconvenience of tremors the rest of the time? Or is it that the stress level increases when you go out?
I tried vegan but I wasn’t eating properly and didn’t have energy or time to follow proper healthy vegan diet. I’ve been gluten free for about 2 months now. I’m going to take another serious look at ketones. My husband is the cook and it would be nice if we could eat the same meals. Maybe if I explained it as a beneficial weight loss program, we can have a win win for both of us.🙂
I’m so happy this group provides us with so many different possibilities to help us. Although it is a costly experiment.
I take Sinemet when I go out because I find being around other people, even close friends, makes my tremors worse, but I do tolerate them at home.
Trying to get one's spouse on the same page for diet is often tricky. He will absolutely lose weight on a Ketogenic diet if that matters to him. I found once I got away from those foods, especially bread, dairy, sugar, and processed food, for month or so they have no appeal to me. I wish I would've discovered this diet 30 years ago. Get him a copy of "The Complete Ketogenic Diet for Beginners" by Amy Ramos. It's paperback. $11. If he tries it for a couple weeks, he'll thank you.
My take is to work hard on nutrition (food and supplements) and exercise so as to work with the lowest meds dosage I can for an acceptable quality of life. I always planned to do that as I grew older ...
Did your neuro suggested there was a "prescription wall" ahead ? - mine painted a picture of prescription options (all symptomatic of course). Currently on one half sinemet CR so some way to go.
Thanks Kevin. After over 6 years, my doctor has finally suggested exercise. I have been doing yoga and stretching but now I see I should be focusing on more strenuous activities.
Kevin, can I ask what your nutritional regiment is like. I tried to go Vegan but I didn’t eat enough protein. Now I’m testing gluten free and eating fresh foods only. Are there foods you totally avoid? Any suggestions?
Two things- be sure you aren't blaming the symptoms of advancing PD on the meds you take and be sure to take enough meds to exercise, as that has been found to be the one thing that really does slow down the progression of the disease.
I vote for natural herbal supplements, Vitamins and amino acids. My reason is to avoid getting worse. Nature has a remedy for everything. So far its working for me.
Why do you believe supplements would be better? The supplement manufacturers are in business to make money also. I’ll guarantee you that the “drug” companies have done more research on their products than the supplement companies have on their products.
The short answer is "hind sight is 20/20" Otherwise you and anyone else won't know until you pick a path and if its the incorrect path - we can't go back in time.
The movement disorder specialists I respect say the sooner you get started on Sinemet or something similar the better. More and more people are being transitioned to Rytari however to cut back on the yo yo effects of on and off symptoms from sinement as Rytari is more long acting. The people with parkinson's i stay in contact with that do the best do high intensity exercise at least 3-4 days a week and remain social and active in their community. I know quite a few taking supplements and the like and I am not convinced. Also important to note - everyone with PD is different - have not met any 2 the same in 10 years in over 400 clients.
There is Hope!- Take a look at the research Georgetown university is doing currently in phase 2 trials with Nilotinib - also picked up by Harvard to study its affects on Alzheimers I believe. They had to "heavily negotiate" with Novartis the owner of Nilotinib to allow Georgetown to study its potential positive effects on PD. But Georgetown eventually won and is now testing its effectiveness. if successful -would not be cure but could potentially reverse some effects. Looks promising- I know a few in the study.
You can go to clinical trials.gov to find current research studies going on. I could also put you in touch with people with PD who they themselves have been in research studies and keep up with all these studies.
( I work and stay in contact with hundreds of people with parkinson's ) - I am a Speech-Language-Pathologist and aside from treating, leading communication practice groups, leading teams of health professionals, fundraising, educating, being a speaker, and advocating for you... I do everything I can to help my clients which means lots of reading , networking, and asking lots of questions of them.
Thank you rebtar! I love what I Do and the people I do it for are all wonderful and deserving people. I would expect you to be no different. You deserve to have your health care professionals understand the complexities of your condition , anticipate your needs and have resources available to you as needed. Sadly however these professionals are hard to come by. Just as you are doing here, just keep advocating for yourself and build yourself a team of professionals you can trust.
I am sure their are speech language pathologists in Europe. Those who are LSVT LOUD certified clinicians (lsvtglobal.com) have taken special training to understand how to address the speech and voice changes that can occur in Parkinson's disease. They also understand changes in swallowing and thinking. knowing what I know about the condition If I was diagnosed with PD aside from finding the right medicine dosage I would want to know what exercises I can do now to possibly prevent the progression of it affecting my gait, voice, swallowing. All of my people agree they work better in teams or groups so if these groups do not exist in your area I would go to the group of health professionals in your area that claims to be the best with PD and tell them you want them to organize practice groups where you can exercise and socialize together. The great thing about starting groups is once you get started - anyone in the area interested in Parkinsons will want to copy it. You can be the one who started it!
I live in Canada. There doesn’t appear to be many clinical trials here. My name is on many research groups. I am always willing to participate in research.
Regarding you're not being convinced about supplements, I'd like to make three points. First, I believe the emerging school of thought is that the most effective therapy for Parkinson's is multipronged. Second, supplements and drugs have two different missions, and, third, there are people on this forum who say that because of their multipronged approach, of which supplements are an essential component, are healthier now than they were before they were diagnosed. There are even people in this foruum who claim they are symptom-free which they attribute to their regimen. There are no people on this forum who make such claims based exclusively on drugs. We all understand that anecdotes are not the same as data, but, for example, if a whole lot of people on this forum swear that their symptoms are significantly reduced due to thiamine/vitamin B1, that means something to PWP.
The multipronged approach means vigorous daily exercise, sleep hygiene, social engagement, stress management, nutritional changes, correcting deficiencies, and addressing possible issues with gut microbiome, leaky gut, small intestinal bacteria overgrowth, and the like. The drugs which address these issues, like Humira, come with serious risk.
There is no combination of Parkinson's drugs which, IMHO, come close to what can be accomplished by the strategies I've mentioned.
Lastly, there is that ton of research on the safety and efficacy of many supplements. There are hundreds of links on this forum providing such data.
MBAnderson. Well put! I agree with everything. and thank you for welcoming me into your community. I am more like you than you may think (explained below). Your points make for good discussion. Maybe "I'm not convinced" was a poor choice of words. Those who are implementing so many interventions are clearly "driven" people,. And I think just by that personality type they are going to do well because they refuse to give into something. Those who take the placebo in research studies feels positive effects upwards of 50% of the time depending on the study you look at. Also They say ~ 40% of people are clinically depressed even before they are diagnosed with Parkinsons disease. Lets say we take those 40% and give them feel good B vitamins that they may be deficient in and Vitamin D which most people around 60/70 are deficient in and we take them from purposeless exercise to goal driven exercise- I'd say 100% those people will end up feeling better than they have felt in years if not decades. I can say this with some certainty because unlike many health care professionals you will come in contact with is I was born with and live with an uncommon condition that most Doctors I've run into say they have heard of it but don't know much about it. Basically I was on my own to fumble through the first 20 years of life. The benefit of this is I had to overcome many struggles that you are just heading into: Difficulty attending, difficulty learning, difficulty reading, fatigue, low strength, fading self confidence, social isolation, low bone density, ,looking different, acting different etc, not understanding why or how your different... I had to find internal motivation and "Drive" to push myself beyond what my body wanted to offer me which takes a lot of physical and mental strength and not sure I could have done it on my own. I achieved this largely through intense exercise with crew/rowing and strength training and good upbeat music and the drive to defy my condition! Compared to others with my condition ...I am doing very well! I share this with all of you so you don't just see me as Health professional because if I were only that I am not sure how much I could do for you other than offer support and regurgitating what comes out in print. We are human beings and we all need to LIVE...We need to Exercise, sing, dance, LAUGH, meet with others and empathize(as you are doing here- seeing each other would be even better though) and believe in yourselves and most importantly know that others believe in you.
A powerful and moving story. Perseverance personified. Inspirational stories l like yours make me glad I just have Parkinson's. Thank you for sharing and welcome.
PS. I agree with you about the placebo effect. PWP are especially vulnerable to it, but if I can get a placebo effect to last a few months, I'll take it. Ha.
BeenthereB4, I recognize that many PD healthcare professionals say that you're better off starting C/L therapy early but, I've never heard an articulate explanation as to why -- since prescription drugs only provide short-term relief on a daily basis, are not neuroprotective and don't slow, stop, or reverse progression, why would PWP be better off?
Of course, a person is better off getting relief from their symptoms, but they can accomplish that with a multipronged regimen without the dyskinesia or any of the other side effects.
I lead a couple of online groups via video teleconference and took the time today to ask them about what vitamins, minerals, and supplements each takes. The cumulative list is as follows: Vitamins: C,D, and E. Vitamin B complex, Multi-vitamin, fish oil capsule. Magnesium and Metamucil I 'm about to lead another group so will get back to you with what they say. Keep up the CAN DO attitude!
WOW BeenthereB4, I am overwhelmed by your kindness! Thank you so much! I am taking all of these except for Vitamin E. I will add it to my daily regiment
Here is the remaining list of supplements I got from other group members with PD...opening a can of worms indeed....A great topic to discuss though:
Potassium, Vit. B12, Cinnamon, Magnesium, D3, Probiotic, Biotin, Melotonin(sleep), Ginko biloba (memory), L-methyl folate (?), Alpha lipoic acid (antioxidant), Tumeric Root extract450 mg (natural anti-inflammatory and suggested it may help prevent the build up of bad proteins in the brain such as Tau - there is research on this, Polyethylene glycol (laxative), Metho-cellulose (laxative), meta mucil (laxative) There was some discussion regarding the stool softeners so as to to avoid taking them near C/L as it is digested in the intestine and may compete with the bodies ability to absorb the C/L.
Some people were taking nothing or just D3 and some were taking up to 8-9 (this is the researcher of the group).
_I am not recommending any of these...just sharing the knowledge.
All of these PWP were on Sinemet, rytari, or azilect and have had the condition from 3 to 25 years. and they were in there low to high 70'syears of age. A few low to mid 80's. All say their list of supplements were approved by their neurologists. All see movement disorder specialists. None report feeling any side effects. ( this was out of 2 groups of about 30 PWP). None had DBS.
When diagnosed in 2012 my doctors answer was to start on meds right away.Like most of us I read as much information and then went to a motion disorder specialist and told her I wanted to wait before taking any medication. She agreed and said at least take Azilect which I've been taking. 2016 my right hand got stiffer and I started taking lowest dosage of medication and it's helped a lot. She never pushed me like the first neurologist and I feel waiting may extend the years I have to get results. I know we're all different but we all have the right to make our own decision while hoping for a cure or medication to help slow it down. As we hear from all experts, exercise is key and it's free !
Again, some people who've been living with Parkinson's for many years have stabilized their progression and some have even become symptom-free. Some of those people use prescription drugs and their own regimen and some use just their own regimen, but none accomplish that with drugs alone. How does that amount the false hope?
I trust Big Pharma more than the supplement manufacturers. Supplement manufacturers are in the business of making money without having to show any proof that their products are of any benefit to anyone, or that their products actually contain any of what is on their label. I have high blood pressure and I take a pill to lower it. The pill doesn't cure me, but as long as I take it, no high blood pressure. Same thing for my acid reflux and high cholesterol. Some things can't be cured, but they can be controlled. Anyone saying that Big Pharma is intentionally not finding a cure for any of the diseases that plague us needs to take off their tin foil hat. A cure would make them tons of profits and the scientist that discovered the cure would win the Nobel prize.
I do take a multivitamin, Niacin, COQ10, and a prescription brain food that contains B vitamins and NAC. All of these were prescribed by my Dr. The COQ10 is the most expensive pill I take because my insurance will not pay for it.
Delaying taking meds doesn't delay PD progression, it only delays relief from the symptoms.
Along with CoQ10 you may want to ask if a magnesium supplement is needed as well as this is also lowered with statins. When your magnesium gets low it can lead to muscle cramping - a symptom of Parkinsons also but may be masked by the side effect of the statin...just a thought
In a discovery that might turn out to be a game changer in Parkinson’s research, University of Alabama at Birmingham researchers discovered that DNA methylation causes L-DOPA to stop being effective after a few years, instead giving rise to dyskinesia — involuntary jerky movements making life even harder for patients
Now, the research team in Birmingham seems to have found the reason.
They discovered that L-DOPA triggered widespread changes in DNA methylation. This process is a common way for cells to change their gene activity in response to environmental factors. When enzymes place the molecular tags — in the form of chemical methyl groups — on the DNA, the genes become either less or more active.
The team found that in some areas, methyl groups were lost, while other parts of the DNA became heavily methylated in nerve cells from striatum — the brain region holding the dying dopamine-producing cells
The sub-Saharan study certainly seemed authoritative, yet this article indicates it's wrong. I'm going to send to Dr. Okun at the Parkinson's foundation and some others and see if the study is changing their mind.
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