I was diagnosed in March last year but had some symptoms for years. Before starting Thiamine, I had pins and needles and bad pain on the left side of my body (affected side) 24/7. The pain subsided greatly after starting high dose Thiamine but still had some. Few more things have helped me to eliminate the PD related pain 100% including:
✅Thiamine 3grs a day / 6 days a week
✅Intermittent fasting
✅MagTech and Aximagnesio
✅Soft ketogenic diet
✅No gluten
✅No sugar
✅Dark chocolate (85% to 100%)
✅Mannitol
✅Vitamin D3 and K2
✅Bulletproof coffee With NO coconut oil
✅Indoor group cycling
✅Mindfulness practice
I have had no pain for the past few months.
I mostly give the credit to Thiamine hcl and soft ketogenic diet then magnesium followed by the vitamin D3, K2.
Kia
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Kia17
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Initially, took a few months to find the correct dosage with every month and sometimes every week contact with Dr Costantini. A few months ago I noticed a reduction in my left side arm swing. I contacted Dr Costantini and he advised to reduce the Thiamine dosage from 3grs a day to the same amount but for 6 days a week . He was right and since then my affected side’s arm swing (left side) become normal.
Thank you! I will show this site to my husband to see is he is interested in "Bulletproof coffee." He used to love coffee and drank 3-4 cups every morning. Since his diagnosis in March 2018, he can't stand it!
Normally people who take bulletproof coffee have reduced their carbohydrate intake significantly. Taking high carbs diet and bulletproof coffee (high fat diet) at the same time won’t help and do more harm than good.
Had my pain getting worse as soon as I ate something sugary. Had brain fog and concentration problems. My hbA1C and FBS was normal though.Havenot done Glucose tolerance test.Now I can think clearly, doing much better multi tasking with no brain fog with 0 pain.I have lost 9kg in 4 months.
Is your pain getting worse after eating a piece of bread or pasta, or a cookie?Do you have fat around your waist or belly ? Any family history of diabetes or high blood pressure ? Have you checked your Fasting blood sugar or Hb A1C and it wasnot normal?Do you have high cholesterol and Triglycerides? Don’t you have enough activities in a daily basis? Do you have brain fog or concentration problems?If the answers even for some of them is yes,then you might have insulin resistance, IMHO
My definition of Soft ketogenic diet is a combination of intermittent fasting + low carb diet+ high intake of good fats+ no refined sugar at all.
Yes I would like to know if you eat. I eat a lot especially black/red grapes. I get through about 500g as it is one of the rare foods that doesn't effect my Sinemet
Connie, I only eat berries. No other fruits. But take a rich salad with leafy green vegetables, avacados, broccoli, beets,,, with apple cider vinegar and olive oil with my dinner.
Each 100 grs of grapes have almost 15 grs of sugar. Like you said You have been taking 500 grs grapes or 85 grs sugar. I think that’s too much to take.That’s 20 teaspoons of sugar!
Kia, there is no comparison between natural sugars from fruits to cane sugar. The body doesn't process those two sugars the same. Black/red grapes are capsuled in a bottle and sold as a supplement! Eating natural resveratrol is the best way! Everything in moderation is the key to a good diet.
Thank you Despe, I thought that Connie was referring to natural grapes.I never heard of Black/red grapes as supplements! Thanks anyways. In my opinion sugar is sugar.Refined ones are more harmful.
Kia, berries do have sugar too, not as much, but if you eat a lot of those daily, you still get more sugar than the keto diet suggests. My husband eats a variety of fruits, but in small quantities and one kind of fruit every day. He has lost 30 lbs on a "soft" keto diet which includes fruits and legumes. Legumes, especially beans, are very rich in natural L-dopa, yet they are NOT recommended on a keto diet. Cane sugar, sweets, pastries, bread, and pasta have been completely eliminated from our diet (not that I personally ate these foods).
I was refering to grapes. I eat at least two bananas a day as well as an apple or two. What can i,do if eating fat and protein meat and fish don't let my,Sinemet work and fruit does. I would be off all day if I had a high fat diet unlesss I came of Sinemet. I think i need to look at my diet more closely but I can't eat coconut oil unless it is just in cooking as it also stops Sinemet working
I ve been suffering from low blood pressure dyskinesia and off balance would the thiamine help me. And only 5 hrs of sleep and freezing for 3 to 5 hours. Most days I cannot get out of bed.
Just a point on losing fat fast... my husband lost 10 kg fast and he felt good initially but then not so good. I have also been eating similarly and have just lost a few kg over the last 2 weeks and I feel not that great this weekend. I wonder if it is impurities in the fat in the body being flushed into the body as the fat is burned?
My husband has lost over 50 pounds in the last 20 months since being diagnosed with MSA and as a result ended up with gallbladder problems (sludge, not stones or polyps). The GB pain was horrible and caused him to be nauseated for 9 days straight, so he rarely ate or drank as a result and became dehydrated. His digestion then slowed and, combined with the chronic constipation, was miserable for weeks until I put him on a diet to repair his leaky gut, flush his gallbladder and added some choice supplements to help support his digestive system. gutsense.org/index.html The supplements have helped tremendously with the digestive issues and constipation, but he still occasionally suffers with the pins-and-needles pain whenever gas builds up. (He's now also gluten-intolerant, apparently.) I'm going to give the B-1 therapy a try. I'm already convinced that using the correct form of some of the B's is absolutely necessary, especially after switching to Life Extension's bio-active form of B-Complex and noticing he had more energy right away.
Are you taking the full dose of that b complex? I have my husband on 1/2 a dose ie 1 cap per day but it seems so strong I am bit scared to give him the 2. His bio active multi vitamin has 400 mcg folate and so has the b complex so he has one of each instead of 2 so he has 400 folate total as I don’t want to overdose him on that.
Yes he takes the full dose: one cap twice per day (because ONE niacin flush reaction in a lifetime is enough for anyone. lol). He's not on a multi vit at the moment, mostly because I haven't found one I'm satisfied with that doesn't contain iron.
This is the one mine takes but I would prefer it not to have folate. I checked with them about the folic acid and it is the methyl folate extracted from a plant. It seems to have close to the rda for most vitamins but lower on minerals.3 mg of iron. I don’t mind that small amount of iron as we have cut meat right back.
Our body has only learned to use carbs as energy and it takes sometime for the body to adapt for using fat as energy source. In that transitional period people may notice some symptoms such as keto flu, but as soon as get Keto adapted the symptoms will go away.Electrolyte imbalances ( Sodium ,Potassium, Calcium, Magnesium)are the main causes of keto flu symptoms.
I participated in this online study. Here are some of their food conclusions:
From Bastyr Study
* Foods associated with slower progression included: fresh vegetables, fresh fruit, nuts and seeds, non-fried fish, olive oil, wine, coconut oil, fresh herbs, and spices.
* Foods associated with faster progression included: canned fruits and vegetables, diet and non-diet soda, fried foods, beef, ice cream, yogurt, and cheese. (Beef also showed up but may be attributed to iron)
It is good that you are doing well Kia and that you are attending to your wellbeing. What I find difficult is understanding how you can be so sure what has stopped your pain.
You give credit to a number of things in order of importance but omitted to mention Sinemet in your list of substances you take. Somebody finally askd you if you took meds. I would guess it is Sinemet and exercise that is the main ( though probably not he only) reason you have no pain. I think if you were not on sinemet you would have some pain especially if you didnt exercise.
I think you are about 18 months diagnosed so 150mg day may be making quite a difference to you.
Thanks for your comments. In fact, you raised a good point that I had thought about it myself months ago. While I was taking Sinemet but still had pain but after started adjusting insulin response I noticed that the whole pain was gone therefore It wouldn’t be Sinemet effects. No doubt that Sinemet hepls greatly but I think the pain reduction to 0 isnot something from Sinemet.
Dr Costantini has also recently reduced my daily intake of Sinemet to half. Now ,I am taking 25 mg x3 times instead of 50mg x 3 times a day and Thiamine from 7 days a week to 6 days and I am well responding to the tweak. He believes that as a result of his treatment my Dopaminergic cells have been restored and I would need less Thiamine and Levodopa.
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