I was diagnosed with Parkinson's in July 2020. In the last year I have lost weight by around 3.5 kg
I went to a nutritionist because of the weight loss and, in particular, the loss of muscle mass.In addition to a diet and the recommendation to continue going to the gym twice a week for bodybuilding, he recommend taking 3 to 5 g of creatine and Whey protein daily.
I've been doing some research on the forums and don't seem to be any restrictions. Do you have any opinion on this subject?
Whey protein is made from dairy which a lot of pwp avoid.
If the dairy issue is a problem, another consideration is astaxanthin which I wrote about here :
healthunlocked.com/cure-par...
In addition this 2024 meta analysis of multiple studies adds a bit more confirmation to what I wrote :
pubmed.ncbi.nlm.nih.gov/382...
Here is a relevant quote from the meta analysis :
' The effects of astaxanthin supplementation for 8-12 weeks on cognitive accuracy were marginally significant (SMD: .12; 95% CI: -.02-.26) and on reaction time was not significant (SMD: -.08; 95% CI: -.26 to .10). Remarkably, astaxanthin supplementation combined with regular training could enhance the fat oxidation (SMD: 2.56; 95% CI: 1.24-3.89), and significantly improve the physical performance (SMD: .62; 95% CI: .17-1.06). The subgroup analysis further showed significantly greater benefits when performing the aerobic exercises performance (SMD: .45; 95% CI: .13-.76), when the dose was ≥ 20 mg (SMD: .37; 95% CI: .11-.63), and when the supplementation duration was > 12 weeks (SMD: .66; 95% CI: .13-.63). We conclude that astaxanthin supplementation could significantly enhance aerobic exercise efficiency, especially at higher doses and for longer durations. '
Art
Don't use Whey protein as it is made from cows milk, is inflammatory and increases the risk of PD, dementia and several cancers, as well as osteoporosis.
Use pure pea protein or hemp protein; they are much better and will be kind to your body and nervous system.
Creatine is fine but I have not seen great benefits from it n my patients.
I have not sen any convincing scientific evidence that cow milk is inflammatory. Some studies have indicate that resultat. But there are studies studies where the resultat were anti inflammatory or neutral as well. Even so, it is not for sure that it have any implications to whey protein. The advantage with whey is that it is metabolised fast which could make it easier to time with levdopa intake (avoid protein at the same time as levdopa). But other from that, it should be fine to substitute with some other type of protein supplement.
Creatine will boost the energy system for booth the muscle cells as for the brain. Some smaller studies have indicated that it could be neuro protective in combination with Q10. But some people get stomach ake from Creatine supplementation.
The main reason for the weight loss is probably a negative energy balance due to increased muscle tonus in rest and in antagonist muscles in movement. I would focus on that first. Otherwise the protein will be used as energy and not to increase the muscle mass.
There is unequivocal evidence that those consuming animal dairy (except butter) have up to 60% higher risk of PD. Plus all the others I mentioned.
Please share links to the evidence as I have not seen any and I would appreciate it!
Google dairy and neuro inflammation.
I have and that is not specific to whey. I also found that only low fat dairy has been found to be the issue, not regular fat dairy. That is why I asked for specific studies on whey. I have added what I found to this thread. Please add specific links if you can so I can review them. I would like to be as informed as possible. Here is the overall dairy link I found:
here's a few:
13 Gutierrez, David: “Dairy Consumption Increases Parkinson’s Risk in Men”; naturalnews.com/z022463_dai...
14 Walia, Arjun: “A Massive New Study Shows How A Cow’s Milk Does NOT Do The Body Good”; thespiritscience.net/2015/0..., September 12, 2015.
15 Hyman, Mark MD: “Dairy: 6 Reasons You Should Avoid It at all Costs”; drhyman.com/blog/2010/06/24....
16 Goldschmidt Vivian: “ALERT: New Study Confirms Dairy Harms Bones”; saveourbones.com/alert-new-...; December 2018.
I am busy helping people recover from Parkinson's so don't have time to dig through all my research files for more.
Thank you for all of the information and your time. Have a great day!
Not two PD patients are alike! The body will protest if a nutrient is doing harm! Two snow flakes are not alike. Raw milk and grass fed full fat milk have all the good nutrients that missing in low fat and fat free conventional milk. There are posts about Whey Protein on this site, too.
Now do we have random associations or third hand claims or do we have valid and replicated well designed scientific studies detailing mechanism relationships? Because I sure would like to know more about the actual relationship of milk to body health in their specific effects that have some demonstrated mechanism basis.
So I am going to take my high school education (I did graduate in the top two thirds of my class!) and weigh in on this:
One of the weaknesses in all of the "dairy bad" research is that it lumps all dairy together.
I found this study: Intake of Fermented Dairy Products Induces a Less Pro-Inflammatory Postprandial Peripheral Blood Mononuclear Cell Gene Expression Response than Non-Fermented Dairy Products: A Randomized Controlled Cross-Over Trial: sci-hub.se/10.1002/mnfr.202...
According to this trial, fermented dairy products are less pro-inflammatory than non-fermented dairy products. They compared fermented products (cheese and sour cream) with non-fermented products (butter and whipped cream). "In this study, we have shown that intake of a high-fat meal composed of fermented dairy products, and especially cheese, has a less pro-inflammatory effect than intake of the non-fermented butter and whipped cream".
So the study says fermented dairy is okay, non-fermented dairy, not so much.
This lines up with the SCD Diet advice. The SCD diet allows hard cheeses and yogurt that is made to specific guidelines. If you have read my posts, you know I am a fan of the SCD: The Specific Carbohydrate Diet (SCD) has been shown to normalize the microbiome in people with Crohn's ncbi.nlm.nih.gov/labs/pmc/a... and UC. ncbi.nlm.nih.gov/labs/pmc/a...
The Wahls Diet also allows hard cheeses.
For me, I only have cultured dairy products: Cheddar Cheese and Sour Cream. But I also have butter every day and every couple weeks I have ice cream but I swear I am going to stop ice cream!
Did I mention I only have a HS Degree. Buyer Beware.
As far as causing inflammation, it's most likely the sugars in dairy and in the diets of everybody except the seriously allergic sugar food allergy people (and its in them too its just that they have serious allergic reactions all the time and have to have everything from antihistamines on up to those things that shut down part of your immune system so that your immune system doesn't get as triggered to rain inflammation down on you, or in you I guess...those same drugs risking killing you because toning down your immune system's inflammation response also lets in bugs that sometimes kill you...so there is a saying I use now, "there are no solutions, only tradeoffs."). You wouldn't believe how much excess sugars and carbs (which are basically sugars that just have more "wrapping paper" our bodies have to unpack to get to the sugars) get into us. And yes it is ironic that the one thing your brain runs on for energy is a sugar.
Now about the particular proteins causing rigidity for some people in the presence of (fill in the blank for me because I need someone who knows because I don't, caffeine? creatine? levodopa? B6?), that "sounds" about right.
". ..negative energy balance due to increased muscle tonus in rest and in antagonist muscles in movement. I would focus on that first".where I can find literature ou studies about this?
Thanks
You can google "energy balance equation". If you consume more energy than you eat, you will lose weight. If your energy intake is larger than what you consume. you will gain weight. If you have a negative balance for a long time you not just using stored body fat for energy, but also proteins from the muscles.
If you are eating well (not a negative balance or too much protein restricted diet) and do resistance training, you will gain muscle mass without any supplements. Extra protein intake could make it a bit more efficient. You might achieve the same result in 80% of the time it would take without it.
Creatine will quickly give you around an extra kilo of lean body mass. But that comes from that it will bind more water in your tissue and will disappear when you stop using creatine. The long term effect comes from that you are able to train harder. But if you are new to weight training, that effect is minimal.
Are you saying creatine stimulates muscle activity that generates calories and increases muscle mass because there is more muscle because there's more flexor activity? Because the first part of your paragraph made it sound like extra weight is just really due to water retention.
Isn't it also not about weight purely, since muscle weighs more than fat so if you are lean you were going to be heavier then if you didn't have that muscle mass. So if Crepe is losing weight, is it maybe because that's the direction Crepe's weight should actually be going anyway?
So can you resolve the conflict where it sounds like you're saying really what creatine does is make you retain water and that's where the additional weight comes from, not muscle mass where muscle is more heavy than water and adipose tissue. Just a bit confused here.
Sorry about the confusion, I was trying to say that PD could make you get into a negative energy balance. And you have to focus to correct that first, otherwise you will not gain any weight.
A short description of how creatine works supplied by the chat bot Gemini;
"Energy for Your Muscles: Creatine helps your muscles produce more adenosine triphosphate (ATP), the main fuel source for short, intense bursts of exercise like weightlifting. With more ATP available, your muscles can train harder for longer, leading to more potential for growth.
Increased Phosphocreatine Stores: When you take creatine supplements, you increase your muscle cells' stores of phosphocreatine, a molecule that readily donates a phosphate group to ATP, allowing for its rapid regeneration. This essentially refuels your muscles faster during exercise.
Improved Strength and Performance: By enhancing your muscles' ability to produce energy, creatine supplementation can lead to increased strength and improved exercise performance. This, in turn, can stimulate muscle growth as your body adapts to the demands of tougher workout."
Which might clarify what I meant by that the long term effect comes from that creatine could make it possible to train harder.
This kind of blanket overstatement is not helpful. If there were conclusive evidence to support it, we would all have seen it by now. And I would probably be suffering from having taken 50g of whey protein isolate per day -- in addition to dairy at every meal -- instead of having the slowest progression my MDS has ever seen 8 years after diagnosis. He runs a PD research center that is a Parkinson's Foundation Center for Excellence, has hundreds of patients in his clinical practice, and has written approximately 300 published articles on PD, so you'll forgive me for taking his advice over an unsubstantiated claim that "dairy is the devil."
here's a few:
13 Gutierrez, David: “Dairy Consumption Increases Parkinson’s Risk in Men”; naturalnews.com/z022463_dai...
14 Walia, Arjun: “A Massive New Study Shows How A Cow’s Milk Does NOT Do The Body Good”; thespiritscience.net/2015/0..., September 12, 2015.
15 Hyman, Mark MD: “Dairy: 6 Reasons You Should Avoid It at all Costs”; drhyman.com/blog/2010/06/24....
16 Goldschmidt Vivian: “ALERT: New Study Confirms Dairy Harms Bones”; saveourbones.com/alert-new-...; December 2018.
I am busy helping people recover from Parkinson's so don't have time to dig through all my research files for more.
OK, so I read all of these, and it is pretty thin gruel. The first "article" (it's 17 sentences long) refers to data pulled from a cancer study that indicates a correlation between dairy intake and PD, based on nothing specific, just an "as yet unknown characteristic" of milk. Correlation is not causation, the original study had nothing to do with PD, and it certainly doesn't address the question at issue, i.e., whether whey protein isolate (which has virtually no components of dairy left in it) causes PD or inflammation that exacerbates PD.
The second "article" (it's a webpage) refers to a Swedish study that found higher milk consumption to be associated with more frequent bone fractures. Again, correlation is not causation, and the study had nothing to do with PD. The third and fourth citations are to webpages consisting of completely unsubstantiated claims by individuals (one a doctor, one an MA) who ... don't like dairy.
If this is what you consider conclusive scientific evidence, then we are on different planets. Please don't misunderstand me: it may even be true that dairy is in fact bad for most people and that my metabolism, which thrives on it, is unusual. I just haven't seen any evidence that comes close to supporting the kind of blanket advice you are giving people with a serious disease. You could at least make a good-faith disclaimer, like "some studies may indicate" or "some practitioners believe" rather than making conclusive statements that are not supported by equally conclusive evidence.
Hi Crepe. I too have PD I’m 75
No two of us are alike. My doctor found a high creatine level in my blood which signals possible kidney damage. I was using creatine for the same reason. I was wasting away. I thought it was a great idea but having proper kidney function is preferable in my case. She’s still concerned
Listen to your doctor's advice. I don't question she is right.
I just want say that taking creatine supplement will mess up the p-kreatinin marker often used to measure kidney efficiency. Because it will give false alarm since it is calibrated against normal natural creatine levels. If you have used creatine for a while it will buffer upp in the muscle tissue for around a month. Stop using creatine for 3-4 weeks and have another test. There is some alternative marker for the kidney as well that is not affected by creatine supplementation. But I could not find it right now.-
Are you possibly confusing creatine with creatinine?
Your body breaks down creatine into creatinine, which is then filtered out by your kidneys and eliminated in urine.
I am aware of this. Parkylot stated that his/her doctor ordered a 'creatine' level. More than likely it was a creatinine test, probably with BUN. Hence my post.
How much creatine is too much for kidneys?
Rhabdomyolysis (breakdown of skeletal muscle tissue) and sudden kidney failure was reported in one case involving an athlete taking more than 10 grams daily of creatine for 6 weeks. People with kidney disease, high blood pressure, or liver disease should not take creatine. mountsinai.org/health-libra....
This is all I could find on Whey supplementation and it's all positive. If anyone has anything to add, positive or negative, please add it. I am currently using whey so if it's the wrong thing to do, I would like to know as well.
medicalnewstoday.com/articl...
journeywithparkinsons.com/2...
parkinsonsdaily.com/protein...
here's a few:
13 Gutierrez, David: “Dairy Consumption Increases Parkinson’s Risk in Men”; naturalnews.com/z022463_dai...
14 Walia, Arjun: “A Massive New Study Shows How A Cow’s Milk Does NOT Do The Body Good”; thespiritscience.net/2015/0..., September 12, 2015.
15 Hyman, Mark MD: “Dairy: 6 Reasons You Should Avoid It at all Costs”; drhyman.com/blog/2010/06/24....
16 Goldschmidt Vivian: “ALERT: New Study Confirms Dairy Harms Bones”; saveourbones.com/alert-new-...; December 2018.
I am busy helping people recover from Parkinson's so don't have time to dig through all my research files for more.
Be careful with creatine if you also ingest some form of caffeine: pubmed.ncbi.nlm.nih.gov/263...
Disease progression increased for those taking caffeine and creatine.
I use both whey protein (isolate) and creatine daily: 50g and 5g, respectively. For what it's worth, I was diagnosed 8 years ago and have had minimal progression.
Whey protein isolate digests very quickly and therefore makes it easier to get your protein while avoiding uptake conflict with carbidopa/levodopa.
You might find this thread helpful:
healthunlocked.com/cure-par...
I would love to know if there is anything else you are doing/taking that could contribute to your slow progression.
Hi, I started taking 1 complex of B vitamins and 1 magnesium two days ago as a supplement. Daily medication is 3 sinemet and 1 rasaline.
Physical exercise per week: 2 one-hour walks, 2 hydrogymnastics classes, 1 joint mobility class, 1 Pilates class and 2 hours of weight training in the gym.
Thanks for the information. Sounds like I'm close to what you're doing. 4 carb/levadopa a day, 2 magnesium, 1 b complex, vitamin d, mucuna & exercise. I do 4 20 minute HIIT workouts a week, 30 minute walk per day, Qigong 5 days a week, Yoga once a week. I definitely need to do weight training but haven't been able to fit that in consistently yet.
Good day, check out the below article prior to deciding how to mange your weight loss. I was diagnosed with PD around the same time as you and I went through exactly the same experience. I started using creatine 5 g a day for approximately the last year and then discovered it was causing higher rigidity, although I was getting more strength from it and had put on an extra 7 pounds the benefits did not outweigh the side effects in my case and to be clear I’m not recommending anything here just sharing.
Regarding the type of protein that you take I would consider looking at vegan forms of protein, such as pea protein with zero sugar I use Vega brand which is available on Amazon again just sharing my experience not recommending anything.
Best of luck to you, my friend. This is a journey that is different for all of us.
I am 100% sure a scoop of whey protein isolate and creatine daily, along with regular weight training, is going to make a noticeable difference in a positive way. I’ve done it for years.
Whey doesn’t have any lactose, so don’t worry about that.
Whey has all the essential amino acids, including cysteine, which is a precursor for glutathione.
Creatine will help muscle growth and recovery as well.
Trust me, it will help.
Hello! Here´s a link about Creatine that might help you. instagram.com/reel/CyqddTTL...
There's a lot of discussion about dairy. Personally I think a lot of our weight/muscle loss problems stem from poor gut health; particularly a lack of nutrient absorption. I have found the Plantarum and Licheniformis probiotics have helped along with keto porridge made with pysillium husk, linseed and walnut etc.
"I think a lot of our weight/muscle loss problems stem from poor gut health; particularly a lack of nutrient absorption."My problems are probably due to a lack of nutrient absorption.
Can you explain the dosage of the probiotics mentioned and how long you wait until you got results.
Licheniformis is available from kiki-health.com/shop/body-b... and others but if buying from an online store DO check their reviews first because there are a lot of scammers out. Plantarum can be purchased from iHerb who is reliable supplier nz.iherb.com/pr/swanson-l-p... The dose rates are at these links. Some folk struggle with probiotics; I don't but tend to start with a low dose.
Keto and protein 
Is weight loss common with PwP?
Parkinsons Disease and anti-depressants
