I know that this is going to sound ridiculous, but after living with Parkinson’s “disease” for 5 years, it is becoming impossible to deny that eating protein is causing my condition. When I was first diagnosed, five years ago, I also started to have peripheral neuropathy. Quite by accident, I noticed that if I didn’t have lunch, my Parkinson’s symptoms seemed a bit better and so did the neuropathic pain. Through some trial and error, I found out that eliminating meat from my diet had the most noticeable effect and I became vegetarian. My neuropathic pain became very much improved and my Parkinson’s symptoms were a bit better for a while. After about a year, I noticed that dairy was affecting my symptoms and I changed to a vegan diet, with again an improvement in my symptoms. I am now at the stage where any sort of protein causes extreme neuropathic pain about three hours after I eat it. I obviously have to eat some protein, but I am now starting to dispair as I have been passed around various specialists and none can find a cause. My blood tests don’t show any problems and I have also been tested for a metabolic disorder, which was negative. My medical team just tell me to eat protein and I decided to have a burger at a family bbq. I got the severe burning pain three hours later, but my off state, especially during the night is now significantly worse. I am surely not the only person to have had these symptoms and I believe that if I could get in front of the right specialist, they could help me. My line of thought is that it could be gut related, but I do not know where to turn. I just wanted to share my story in case anyone had heard of anything similar. I am planning to have written on my gravestone “I told you protein was killing me”
welcome back to the forum, I am sorry you are having such problems and as you say I am sure you will not be the only one experiencing such issue. Hopefully the Parkinson’s community will share their experiences, in the meantime please do have a look at our information on Parkinson’s and protein at https://medium.com/parkinsons-uk/parkinsons-and-protein-what-s-the-connection-41e6c820e071. I hope this helps.
Sue - Moderation team
very interesting; my experience after 6 yrs diagnosis is that my conditions of dyskinesia/bradykinesia are hugely worsened an hour after eating absolutel any protein…if i were in your shoes, and told I had a biologic need to ‘up’ my protein, then i’d remember Bowie’s ‘space oddity’ song (!), and take a protein ‘pill’ last thing at night !
I fully understand where you are coming from. I have been experimenting with my food for a month or so.Protien within 2 hours or more before my sinemet often has a devastating effect and won’t work at all. I now keep my protien intake, as far as i can, to a.m and try not to eat any after that. It does make a huge difference. Sometimes i think these specialists just think we’re a bunch of hypochondriacs…
I read this with interest, even though it doesn’t appear to be relevant to me. For many years I worked in Horticulture, and don’t get me wrong, I don’t think you are a plant. However, there is a Plant condition called Monsoon/ Drought syndrome, don’t bother googling it as it is not officially recognised.
Basically, a plant dries out, and the well intentioned human gives it 20 gallons of water, then promptly forgets the plant, which dries out, and the guilt ridden human repeats the dosage etc. Each time the plant recovers, then wilts, but each recovery weakens the plant.
Just a comparison, but the effects do sound remarkably similar. Hope you get yourself sorted out
HI, sorry to hear of your problem. Yo don;t mention if you are on medication for PD. If you take L-Dopa, it is an amino acid and is carried to the brain from your digestive system by the came carriers in your blood that distribute protein. If you eat protein, these carriers are used on the food and there is nothing left to pick up the L-Dopa so your brain can’t use it Hence the worsening of the PD symptoms. Dairy is full of protein and cheese has a particularly bad effect on the uptake of L-Dopa though I don’t know why.
My partner doesn’t eat protein all day so the meds work, then gets her daily protein in the evening, which basically writes off the evening but at least offers some freedom during the day. A large amount of food in the gut may also worsen the uptake of L-Dopa. If it was me, I would try to avoid protein at a time when you want to be active, then eat it when you can tolerate some worsening of your symptoms, and maybe leave an hour’s gap minimum between eating it and taking your meds.
I hope your symptoms improve soon.
very interesting, thanks
Very interesting, it’s highlighted something very important. I think there’s little research on this - no money for drug’s companies.
Another issue we find carbohydrates do not help absorption of Parkinson’s drugs. My husband (diagnosed 14 years) eats normally fruit for breakfast, salad for lunch and meal with meat/fish and 2 veg in the evening ie we don’t eat carbs. It is essential for him to take his meds before a meal. This all seems to work well but yes, when we drop the calories to lose weight, his mobility is best of all.
Many thanks for replying. As well as the protein causing peripheral neuropathy, my Parkinson’s symptoms seem to get permanently worse. I had a burger at a family bbq about a month ago and my symptoms at night have been much worse since. I am convinced it is a gut issue, but not sure if gut bacteria could be producing anything toxic?
Could be processed meat, unless the burgers were. Not factory made…
Either way, may your Gods protect you
My husband finds chicken the worst but fish and prawns not so bad. We are on another forum called Health Unlocked, a very informative and knowledgible website, and a lot is being researched about gut bio. It certainly will do no harm to take a probiotic. One reccommended is Bio-Kult Mind. It is worth a try and the company is doing research into the benefits of it for PD. It is also a British company.
Many thanks, I have posted on health unlocked without much luck. I have also tried some probiotics, but will give your suggestion a try.
You don’t sound ridiculous!. Most of us PD folk suffer from digestive problems of one sort or another and it is clear that the digestive system has a great deal more to answer for than just being one of PDs “symptoms”. It is an integral part of the disease.
The NHS offered me no help with this so I went to a private nutritional consultant who ran a comprehensive set of tests (including some for which blood samples were sent to the USA). Based on this analysis the nutritionalist transformed my digestive system using the Auto-immune Paleo diet (AIP) and a carefully selected set of dietary supplements. It has been literally a great relief!
We are now concentrating on addressing other aspects of PD that are amenable to dietary adjustments.
I have no illusions about finding a cure; but impeding the progress of the disease and making life considerably more comfortable are realistic objectives.
Have a look at EntireWellbeing.co.uk. That’s where I went for my advice and help.JCPB
Many thanks for taking the time to reply, I will certainly give this a go
WE should not take Ldopa 1 hour before, or until two hours after a protein meal. The Madopar etc leaflet and the guidance your Chemist attaches to the prescription are completely wrong. According to the Mayo clinic expert Dr Ahlskog in his book “The new Parkinson’s disease treatment book”.
A ‘must read’.
Many thanks for taking the time to reply, I will give the book a read. In my case, it is not that eating protein stops levodopa from working, it makes my off state permanently worse.