How I Completely Eliminated The PD Relate... - Cure Parkinson's

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How I Completely Eliminated The PD Related Pain

Kia17 profile image
57 Replies

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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57 Replies
theAfrican profile image
theAfrican

Did Dr C help you to the correct dose of thiamine (3g) . How long it took you to find the right dose.? Why 6 days instead of 7 ?

Thank you Kia

Kia17 profile image
Kia17 in reply totheAfrican

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.

in reply toKia17

Fantastic results, Kia!!

Who would have thought that leaving one day off the schedule would make such a difference......oh yeah, it was Dr. C!

Art

Kia17 profile image
Kia17 in reply to

Thank you Art

Kia

Grumpy77 profile image
Grumpy77

Welldone and thanks for sharing

With so many indoor cycles around with varying cycling postures and advantages, how do you find the right one to use?

Kia17 profile image
Kia17 in reply toGrumpy77

Thanks Grumpy77

I do RPM and Trip from Les Mills for 40 to 45 minutes 3 to 4 times a week.

Grumpy77 profile image
Grumpy77 in reply toKia17

thank you

Despe profile image
Despe

Hello, Kia! Are B1, D, K and magnesium the only supplements you take? What is "Bulletproof coffee"? Thank you. :)

Kia17 profile image
Kia17 in reply toDespe

Hi Despe, The above are the only supplements that I am taking. Bulletproof coffee:

blog.bulletproof.com/how-to...

I donot add ghee or coconut oil to my coffee.

I love the taste and aroma.

Despe profile image
Despe in reply toKia17

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!

Kia17 profile image
Kia17 in reply toDespe

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.

Despe profile image
Despe in reply toKia17

He is on a "soft" Keto diet. No sugars or carbohydrates, but he loves to eat fruits which is OK with me as I grew up on the Mediterranean diet.

Kia17 profile image
Kia17 in reply toDespe

Despe ,All the best, Kia

enjoysalud profile image
enjoysalud

Hurrah!!! I am happy for you.

Kia17 profile image
Kia17 in reply toenjoysalud

Thank you enjoysalud!

Springfield78 profile image
Springfield78

I note you do not use coconut in coffee - do you use it in your diet otherwise?

Congrats on your success!

Kia17 profile image
Kia17 in reply toSpringfield78

Thanks Springfield

I don’t take any coconut oil at all.It makes me restless but I add pure C8 MCT oil and organic butter into my bulletproof coffee.

Springfield78 profile image
Springfield78 in reply toKia17

Thanks!

Kia17 profile image
Kia17

I just want to highlight the importance of insulin sensitivity again.

Do you want to eliminate your pain , fix the insulin resistance.

The pain will be there as long as you have not corrected the insulin response.No anti depressant or Dopamine related medications could help.

I amnot diabetic but surely had insulin resistance and since I rectified that I became pain free.

Despe profile image
Despe in reply toKia17

Love to read good results, Kia. Keep up the good work!

Kia17 profile image
Kia17 in reply toDespe

Many thanks Despe

Kia

in reply toKia17

Hi. How do you know that you were insulin resistant? What tests did you have?

Kia17 profile image
Kia17 in reply to

Hi Osidge

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.

jeeves19 profile image
jeeves19

Kia how often do you fast and for how long? Thanks

Kia17 profile image
Kia17 in reply tojeeves19

Adam

I do everyday . Not eating anything from 6pm to 1pm next day. I only take the bulletproof coffee at 10 AM.

Connie18 profile image
Connie18

How do you find out about insulin sensitivity and what to you call soft keto diet thx

Kia17 profile image
Kia17 in reply toConnie18

Connie,

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.

Despe profile image
Despe in reply toKia17

Kia, do you eat any fruits at all?

Kia17 profile image
Kia17 in reply toDespe

Despe, just berries

Connie18 profile image
Connie18 in reply toKia17

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

Kia17 profile image
Kia17 in reply toConnie18

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.

Kia17 profile image
Kia17 in reply toConnie18

Connie,

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!

Despe profile image
Despe in reply toKia17

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.

Kia17 profile image
Kia17 in reply toDespe

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.

Despe profile image
Despe in reply toKia17

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).

Connie18 profile image
Connie18 in reply toKia17

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

Kia17 profile image
Kia17 in reply toConnie18

Connie,

If you are taking 500grs grapes a day then you need to re-consider your diet.

I am taking Sinemet too but a low dose. I managed to follow my diet strictly without messing up with my Sinemet.

I think the main reason for your pain and other symptoms is taking too much carbohydrates.

Connie18 profile image
Connie18 in reply toKia17

Thx will look into

jeeves19 profile image
jeeves19

Blimey Kia. That’s pretty hardcore fella. But good for you! I’d better get my skates on I reckon.😊

Kia17 profile image
Kia17 in reply tojeeves19

I am used to it now Adam. I donot feel hungry or crave sugar and lost 9kg just in a few months.

Antonette61 profile image
Antonette61

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.

Kia17 profile image
Kia17 in reply toAntonette61

Hi Antinette

I would suggest to contact Dr Costantini. I am sure he will give you a proper advice. It’s worth it. Believe me!

Fredzu profile image
Fredzu in reply toKia17

How do I contact Dr Costantini? I started B1 yesterday. I take 4x500mg

for breakfast and lunch.

Kia17 profile image
Kia17 in reply toFredzu

Fredzu

Please see this link for his contact details and more information;

healthunlocked.com/parkinso...

LAJ12345 profile image
LAJ12345

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?

neverb4coffee profile image
neverb4coffee in reply toLAJ12345

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.

LAJ12345 profile image
LAJ12345 in reply toneverb4coffee

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.

neverb4coffee profile image
neverb4coffee in reply toLAJ12345

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.

LAJ12345 profile image
LAJ12345 in reply toneverb4coffee

vitacost.com/enzymedica-enz...

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.

Kia17 profile image
Kia17

LAJ12345

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.

healthabc profile image
healthabc

r u taking any meds?

Kia17 profile image
Kia17 in reply tohealthabc

Sinemet 12.5/50mg 3 times a day

PDGal4 profile image
PDGal4

Someone mentioned iron. I just read from a study on a link that I believe was posted here that iron was associated with faster progression.

scienceofparkinsons.com/201...

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)

Hikoi profile image
Hikoi

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.

Kia17 profile image
Kia17

Hikoi

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.

Kia

Kia17 profile image
Kia17

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.

jimcaster profile image
jimcaster

I'm just curious. Why don't you include coconut oil with your coffee?

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