This is an update to my previous post about protein and PD meds.
I am a 68 year old female diagnosed in 2002. I take 1 Sinemet 5X daily and 2 Rytary 3X daily. For the past four years, I have been struggling with what I thought were blood sugar issues, in that I would battle fatigue throughout the day. It was as if my meds would suddenly stop working and I would "freeze" (which is my normal Parkinsons symptom). Tests for diabetes and low blood sugar came back negative. I had every blood test conceived by man and they all came back normal. I was told for four years that I was amazingly healthy for someone that had Parkinsons. I even had the diagnostic test for Parkinsons, which showed that the diagnosis of Parkinsons was correct. Two weeks ago, I called the physician for the Himalaya Co regarding their Mecuna Puriens to ask what their recommendation was for taking it either with meals or on an empty stomach. The doctor told me that I should not be taking any PD meds on anything but an empty stomach, but for sure absolutely no proteins. I knew that Sinemet was supposed to be taken between meals, but NO ONE had ever sat me down and really educated me about this. I immediately consulted a nutritionist and as a result pulled ALL proteins from my diet for 3 days. It was a miracle to say the least. I felt amazing, and was able to cut down the number of meds I was taking. I have slowly added non-animal protein sources such as seeds and nuts back into my diet, so long as I didn't get an "off med" reaction from them. I have also been able to add salmon and am going to try chicken next week. Some dairy products, such as string cheese and cottage cheese are okay in small (1/4 cup) amounts. It is critical that I get sufficient protein each day, so I make smoothies as least once a day and add a non-soy, vegetable protein powder. I feel so much better - wish someone had taken me aside 14 years ago...
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annmariebaird
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Hi.. I have the same problem with my medication as well... I love chicken but if i eat a large quantity it feels as though my medication is not working..(off period.) Will have to give smoothies a try.. Thanks for the post...
My favorite smoothie has strawberries, coconut milk, oatmeal (uncooked), protein powder, banana and a wee bit of stevia. pretty yummy if you also throw in some blueberries!
Hi Annamarie. I want to offer you an alternative to medication! There is no medication on the market that does anything to slow down or stop the Parkinson's. So why take them? They are designed to temporarily mask some of the symptoms, but the body soon gets used to them and you have to take more and more of them until you get to the point where you can't get any benefit at all. That is not a nice place to be in
With fast walking your body produces a natural chemical called GDNF (Glial Derived Neurtrophic Factor). Glial cells are the cells in your brain that have been attacked by the Pd. Neurotrophic means 'Nerve Repair'. The name therefore tells us that these glial cells produce their own REPAIR KIT. Now why aren't w told this when we are first diagnosed?
I have found, through sheer luck, that FAST WALKING helps the body produce more GDNF and over a period of 6 years I slowly got better. In 2002 I felt so much bbetter that I wrote a book about it. That book did not go down well with certain members of the medical profession, who did everything they could to stop me going ahead selling my book, including telling people that I don't have Pd and they should not listen to what I say.
Nevertheless, I am still here, at the age of 81 and still living a good life. I can understand them not wanting people to get better, it isn't good for business, but fortunately not all doctors think that way
Thanks John - I have read your book and now that I am able to move about easier, I will begin this next step. Thanks for your contribution to this site!
I read your article about Isaac Jennings and it might interest you to know that when the former USSR tumbled, they were short of major tranquilizers for psychiatric patients and they discovered that just getting away from their daily lives, sleep and food and shelter was sufficient for many patients to return to their problems/family.
Your posts are refreshing, John. One doctor diagnosed me with PD after a 15 minute exam in his office. One thing he did was push me very hard and because I took a step back and I had told him I had compromised handwriting and poor balance, he concluded that I had PD and prescribed Carbodopa/Levodopa . I was on it for 2 weeks and had terrible dizzy spells and nausea. Once I had to leave work and go to the emergency room. I told my Neuro about this and he told me to cut down on the dose (which was 2 10-125 pills/day). I cut it down to 1/4 pill 4 times a day and that worked for a bit but the brain fog and headaches and dizzy spells were still present. He told me to wean off entirely and call him in 10 days to report. I had no more side effects after off C/L for a few days. I told him I did not want to do anymore synthetic drugs and was going to look for natural products. I said I would keep our appointment in 4 months and tell him how I was doing.
I found two natural products that I have been using for 2 months. The first is
IMMUNOCAL from a company called IMMUNOTEC. It is a whey protein that helps the body produce and absorb Glutethione (the body's own super antioxident). After 2 weeks on this product many of my symptoms were reduced and after two months about 95% have been alleviated. I also started taking CBD oil which is a derivative of Hemp. It helps the nerves.
I feel like I can live forever with the amount of symptoms I have now. I exercise regularly (walking on an incline on a treadmill, rowing and stationary bike). 3-4
times/week. I think a person who is motivated to get healthy has options beyond the medical community and synthetic drugs if that is what they choose. Thanks, John, for being a good role model.
If you would like to try the IMMUNOCAL go to this website:
Hi cowgirlauren. I am pleased that you have been able to come ff the medication. I have no experience with Immunocal, but I don't need anything to help me with my Pd, as long as I keep up the fast walking.
Hi John. Can you tell me the name of the substance you were taking long ago that helped you retain your own dopamine? I follow you and you are a good role model. I'm going to get your book. Thanks for your response.
How much Mucuna do you take and can the Himalaya Co. advise you on dosage etc. I take Mucuna from the health food shop but basically dose myself. I was not aware of the effect protein had on us and really appreciate your post.
I have not started yet - one thing at a time for me. You can call them and ask for the doctor on staff - she works mornings I believe. They are very helpful.
You have to eat protein. Find a nutritionist that will help you through this - that is a must! It is the timing and type of protein meals that helped me. Do not do this without help!
Protein competes with levodopa. I conclude that when not taken with protein, you would need to take less levadopa. The incidental anti-nausea effect of the carbidopa element of sinemet only works when you get to three pills or more because you need at least 75 mg of the carrbidopa to get and anti-nausea effect. Conclusion number two is that if you suffer nausea you shoyld be taking domperidone for this. Otheer may correct me on this. It would take a bit of searching to find chapter and verse but I am pretty certain of my facts although defo.not medically qualified.
Isn't it amazing how little instruction we get? Don had been diagnosed for ten years before ever hearing that protein interferes with C/L. Suggest you also get tested for sleep apnea....another test that ought to be automatic upon diagnosis. Very easy test using a finger monitor and chest strap while sleeping for one night. Then a Spectrocell test to learn what nutrients are in your cells. Often pharmaceuticals destroy certain nutrients and those need supplementing to keep up....another test which should be automatic but isn't. Suggest you read my other posts.
I don't known what's going on with meat anc C/L. I have been Dx with PD for 4 years, I'm 81 and take C/L @ 6:30, 10:30, 2:30 & 6:30. EVERY day, with dinner, I have 1 or 2 cups of red wine; my diner is ALWAYS some type of meat (beef or pork or lamb or poultry or sea food) and that is the time for my fourth dose of C/L and I feel no different! Usually in bed by 9 and sleep 8 hour.
I have learn that all PD manifest in different ways, shapes and forms to different pwp, I thank God for mine. I pray to God that He empowers me to fight this disease.
Its the wine. Beer will give the same benefit, overcoming the medications ineffectiveness following a protein. Also you are consuming fresh meats that are not so bad. You have done well.
It is a mind blowing tale of woe. Don't beat yourself up, someone that you went to for health services needs to at least apologize for not making it clear to you that ingesting protein blocks the metabolic pathway for carbidopa levodopa. But I am not writing to encourage you to be angry with your physician. Glad to know you have been able to reduce your need for Rx by limiting proteins in your diet. When I read how much sinemet AND rytary you took I was surprised, until I read that you had not adjusted your diet to restrict proteins. My suggestion is you continue to carefully add proteins back, especially avoiding processed ones. I have found that fresh sources, even red meat are not all that much of a problem as cured or processed proteins are. Eat smaller servings of them. There is also something, a digestion aid, you can take before a meal containing protein that helps get through the increased symptoms that inevitably follow a protein meal. That is a compound of bromelain and quercetin (extracts from pineapples and apples) that reduces the time it takes for your tummy to break down and use the proteins. I just ate a 2 egg omelette with fresh baked turkey no cheese and olive oil based margarine and ate two of those digestion capsules and that was an hour an a half ago and i experienced no exacerbation of my tremor, for example.
Yes I use MP, raw levodopa source, as adjunct for C/L, for example, when I "feel" that my generic dose of has not provided the right potency, or else I had food in my tummy and it isn't getting absorbed good, I will follow-up with one capsule of MP. It isn't a perfect solution. There is a wise man on this bulletin board that is expert on this topic. Just search mucuna puriens you will find a lot of information on how to use MP. I have a supply of raw MP (that is finely ground red velvet bean from India) that some mornings I mix up with hot pineapple juice just for grins. That powder is supposed to be 3-5% levodopa. It makes me a little high and I find it rewarding. Just saying when you're old and have a chronic neurological problem ... what the heck.
I've been on Rytary now for about a year and am very pleased with the results. Am 62 years of age, diagnosed 15 years ago. Deep brain stimulation surgery at the Cleveland clinic 7 years ago has given me extended life. Without it I can hardly move and I'm locked in dystonia. I also discovered the same thing that you have, that if I totally eliminate protein for a few days it's unbelievable how much better I feel and can move. No freezing. Couple of days ago I gave into eating protein rich food and I'm paying for it now. Thanks for sharing what you've already learned. I'm now going to go into the experimental protein addition as you are doing.
It is also amazing how eggs can get into so many food items. I am very careful with my protein, as I go through the adjustment period after my surgery. More later.
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just for grins. That powder is supposed to be 3-5% levodopa. It makes me a little high and I find it rewarding. Just saying when you're old and have a chronic neurological problem ... what the heck.
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