I want to share my unsuccessful experience. I started keto diet couple of weeks ago. By the end of 1st week my PD symptoms progressed dramatically up to the point that I could not go to work one day. Basically medications did not kick in at all or lasted for an hour or so. I was taking one pill after another, nothing worked, had multiple dystonia spasms, and so on. My guess was that I depleted a glycogen supply while body did not quite switched to burning fats, and therefore could not make an energy efficiently. I was willing to keep going hoping that it should get better with time. Couple of days ago I had an appointment with a new neurologist. Here is his interpretation. He said that they looked into keto diet in regards with dystonia (one of my main PD issues) and did not find it beneficial. His take on it was that worsening of the symptoms was related to protein competing with levodopa absorption. When glucose is not present, body looks at protein as a next energy resource as fat digestion requires more energy (9 kcal fat vs 4 Kcal protein). As a result, protein from the food as well as the body muscles gets digested into peptides and amino acids and all these bio products being present in much higher concentrations than levadopa interferes with levadopa absorption. Levadopa absorbs nonspecifically, through passive diffusion and therefore significantly higher concentrations of competing reagents reverse dynamic equilibrium. To make it even worse this protein/levadopa competition happens in two places: guts and brain. With guts we can try to time food and medicine intakes, but in the brain protein seats pretty much all the time. These are just some bullet points that I recall from the doctor visit, take it as a disclaimer. So, to conclude this story, I stopped keto diet and feel great - medicines work, and most important my fear of atypical PD plus condition gone at least for now (this scare of atypical PD hunts me all the time when symptoms progress). But the sad part is that I was so happy with losing weight on the keto diet, and now my fear of PD + gone together with the hope of wearing bikini this summer.
I wonder if those of you who are doing or tried to keto diet had a similar experience. I am going to give it another try with cutting significantly protein consumption, eating mostly greens with oil during the day and adding protein in the evening. Though I am concerned by my neuro explanation, if indeed the body goes after protein from the muscle for the energy instead of fat because it requires 2 times less energy to digest, then it will always decrease effectiveness of dopamine supplementation. Any thought, experiences?
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Lana666
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I think your neurologist is right interms of competing L/Dopa with the released amino acids as a result of keto diet .
I tried Keto Diet strictly few months ago for 12 days. I reached the ketosis within few days of starting keto. Did everything to balance electrolytes specially Potassium. I ended up with a very bad panic attack . I went to A&E and they check the Electrolytes. Everything were normal but had a T tall in my ECG (an index for hyperkalemia or rising potassium in blood) though my blood test was indicating normal potassium level.
I stayed in ER overnight and checked the ECG again on the following day.
The ECG was normall and they discharged me. I had that panic attack for almost 2 weeks after that but finally it stopped. I searched alot and noticed that coconut oil and other foods contain MCT ( medium chains triglycerides) can cause panic attack.
The doctor in ER advised me to stop Keto asap( Doctors normally choose the simplest way without looking at the advantages that Ketodiet may provide ) So I quit Keto diet as soon as left the A&E.
The euphoria and mind clarity , plus disappeared PD symptoms that Keto diet gave me I had never experienced in my whole life.
I wish if I could try it again but fears of having panic attack again due to having high fat diet specially coconut oil doesn’t let me to do that.
The challenging part of Ketogenic diet is how to sustain it.
sorry for the short answer, I was at work. I have found that the HiInz Amino Acid Protocol does a good job of balancing out the neurotransmitters. Dopamine, adrenaline, norepinephrine and serotonin compete for the same amino acid precursors. 5-HTP is a good one to help the serotonin out but I cant say how much because every person is different. For me, I take a small small amount and Im good, but if I take none I go nuts.
It's a good thing that we are all so finely tuned to our body response, so we can make adjustments in our regimen.
I've been on the Keto diet for about nine months (could be longer ) without any issues, but I'm not a rigid adherent. I eat more protein than is allowed, I don't take levodopa therapy, I drink a lot of Gatorade for electrolytes. My weight went from 210 pounds to 165 pounds (I'm 6'2",) but I think some of that is the muscle wasting aspect of PD. But, who knows? Were all different. I do believe that, in general, reducing lectin intake is a good thing.
It looks so far that keto works well for alleviating PD symptoms in people who are not on L/Dopa, which totally makes sense. Hope to hear from those who are taking any kind of L/Dopa medications.
MB Anderson, may I ask how long has been since your diagnosis?
While nearly all of us will, over time, end up increasing our dose of Sinemet, I don't think it's ever too late to mix in Mucuna, although, as you know, you have to be careful with dosing because it is so difficult to know precisely how many milligrams of L-dopa you're getting with the MP. I do believe there's a lot of people on this forum who have done it successfully (in order to reduce their dose of Sinemet.) I think there are a lot of other compounds in MP that serve the same function as carbidopa does in Sinemet. I'm just now starting to research MP, but so far it seems clear that it is more bioavailable, acts quicker, last longer, and with less dyskinesia.
It is a beautiful Sunday today where I am in St. Paul, Minnesota. The air is cool this morning and the sun is warm -- perfect combination. I'm about to take my beagle/hound/mutt for a long walk on a nice, heavily wooded, bike path that crisscrosses over a creek. I LUV St. Paul, Minnesota because of its Park system.
I have been on Keto off and on for a couple of years. Usually not very strict except when I try to loose weight. I also take levodopa and I have never had an issue with absorption. When on Keto, I really don't eat any more protein than when I am not. I just seem to swap fats for carbs and I usually start feeling bad after a week or so after I start eating carbs. I feel bloated and my leg edema gets a lot worse.
Maybe try to slowly start cutting back on carbs and eating more green vegetables. Switch to full fat varieties of milk, cheese, butter, and use more good fats like coconut oil. After switching to eating more like the Keto diet, my cholesterol went from 200 to 100, and triglycerides were cut by over half.
For those who has not done keto before, you need to take it slow!! I switch to keto over 2 months time slowly dropping carb each week. I started with 300 and drop 50 grams each week till i hit my 50 or less. I used a keto calculator and kept protei the same and adjust carb and fat only. Everyone need to slowlh add more salt ro fhe diet as well unless you have a salt issue.
I don't PD but my dad has. He is NOT on keto but i am. Not everyone will respond to keto the same way in PD. It depends on the trigger or cause of your pd.
Interesting--I am on strict keto diet and it's worked wonders for me (my MDS actually said: if I didn't know you had PD I wouldn't diagnose you with it right now!)
...but I don't take Ldopa yet, so maybe that makes a difference? And I keep my protein low, as well as my carbs. And it was true, for the first almost-month I felt pretty grungy (I had been warned to expect that tho).
PD 3 yrs now, multiple annoying DaT scans to prove :o(
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