My First post : Parkinsons Disease

[John_morris71]

Hi everyone,

Have been reading the board and thought I can share my input and glean from the personal stories portrayed here.

Mother, now 75 years old has PD ( was diagnosed in 2011, when she was 67).

PD MEDICATION: Taking Carbidopa Levodopa (C/L) 25/100 since approx. 2 years. Dose started at 4 tablets : 1-1-1-1 and then in a year became 8 tablets: 2-2-2-2; now I have made it 5 tablets in all : 1-1.5-1.5-1 (for the past 6 months). Based on research and reading done over the years have added supplements that have helped in certain ways. I am not a doctor and am not suggesting that you follow what I am doing on a day-to-day basis. This is only as a means for sharing information and should not be considered as medical advice as I am not qualified or authorized. Please do your own research before trying out anything detailed below.

After having dinner at around 7.30pm in the evening....the next day regimen starts as given below

6.30am - C/L (1)

7.30am : No breakfast only Bullet Proof Coffee 250 ml inclusive of all contents

BULLET PROOF COFFEE : 2 Tablespoons (30 ml) of organic virgin coconut oil +2 Tablespoons of MCT oil (Bulletproof or any good brand) + 1 Tablespoon of unsalted Butter (KerryGold Grass fed-Cows - important that it is grass fed); No sugar added; some people add a bit of Stevia for sweet taste; also some folks add extra teaspoon of Butter; Blend all these along with hot coffee brew - preferably organic coffee. Supposed to be filling and checks the spike in glucose - has to do with ketones,fasting overnight and benefits of ketosis, good for cognitive health... ( pl. do research on the web, you tube etc.)

11.00am - Dose of PROBIOTIC - KEFIR with C/L (1.5)

PROBIOTIC - KEFIR diluted (100ml+ 100 ml water) ; Lifeway or any other brand - preferably one that has less sugar and more diverse bacteria cultures - more types the better it is. Helped ease constipation and is now almost normal.

12.30pm : Lunch (lot of vegetables and a handful of rice)

1.30pm : Just before going to bed for an afternoon nap I give the following cocktail

CINNAMON + BRAZIL NUT + IODINE+ AMLA. Mix all in 250 ml water and take with Iodine tablet.

CINNAMON - 5gms (Ceylon type only, not the other one, cassia? which can be toxic in the long run. Get the sticks and break it up into pieces by hand - easy to do and then powder it dry in a blender). Note/Caution : Acts as a blood thinner and aids in stabilizing blood glucose.

BRAZIL NUT - 1 nut has enough Selenium which acts with12.5 mg of Iodine (nut is grated and given along with iodine - Selenium helps the iodine to be absorbed by converting it into Thyroid hormones T3 and T4 and also negate any iodine toxicity

IODINE - 12.5 mg tablet (Gave 25 mg for 4 months and now have reduced it to 1 tablet of 12.5 mg)

AMLA - 5 -10gms Indian gooseberry - known for its high antioxidant property that is around 60 times that of blueberry ?? - pl. do google search/research; easily available in powder form on the internet or if you go to any Indian grocery store you can find it in the frozen section - make a paste using a blender and keep in the refrigerator). High source of Vitamin C in addition to antioxidant benefit,

3.00pm C/L (1.5)

6.30pm - given with C/L(1)

GINGER + TURMERIC + PROBIOTIC (GOOD BELLY) - Mix all 3 to make 250 ml and give with C/L.

GINGER - 5 to 10gms (grated and blended in a blender into a solution by adding water) 150 ml solution - helped with stopping nausea in a couple of days. Remember that Ginger is a blood thinner; Supposed to help in regulating blood glucose. Best to make ginger solution and keep it refrigerated so that it can be used on a daily basis. (I take about 4 pounds of fresh ginger root, wash it nicely, grate it, then blend it with water - use about 1 gallon of water and use a sieve to get the ginger solution after squeezing the residue for any content, before throwing away the waste; then use around 150 ml of this solution); Feel free to use the residue if you can handle it and get more fiber content.

TURMERIC - 5 gms paste obtained by blending the root ( root is available in many grocery stores either in fresh form or cut into pieces and frozen; I do not get powder from any store); Add a pinch of black pepper powder to increase bio availability of curcumin in turmeric by 20x

PROBIOTIC (GOOD BELLY): 2.7 Oz / 80 ml Plus Shot that has 20 Billion bacteria. Helped ease constipation.

7.30 pm - Dinner

9.30 pm Time to sleep.

Thanks

J

[park_bear]

Welcome and thanks for sharing, John!

[John_morris71 in reply to park_bear]

Thank you and hoping to get more insight so that I can reduce C/L further and try to enhance quality of life for my mother.

[Hidden in reply to John_morris71]

John_morris71,

Some forum members who are taking or testing the HDT/B-1/Thiamine protocol have reported that they were able to lower their C/L dose once they added HDT to their regimen. Here is a link to comprehensive information on HDT :

healthunlocked.com/parkinso...

Art

[John_morris71 in reply to Hidden]

Thanks; will take a look at it.

[John_morris71 in reply to Hidden]

Just started - today ,giving my mother Thiamine HCL. Going to start with 500mg x 2 before lunch in the morning for a week, plan to slowly ramp it up to 500mg x 3 for another week and then finally make it 500mgx 4 ( 1000 mg x 2 times) if necessary. Given her body weight, height, current condition and time since PD, I am hoping 2000 mg (1000mg x 2 times), before lunch should suffice. Once again, thanks for letting me know about Thiamine - saved me a lot of time and effort searching.

[Hidden in reply to John_morris71]

John_morris71,

Just a suggestion, but instead of planning on an escalating dose regimen, it might be more effective to see how your mother responds to the initial dose in order to help determine whether a dose adjustment either up or down is needed. Keep in mind that some people have reported benefit with as little as 100 mg/day of B-1 while some have required 6,000 mg/day!

Good luck with your mom in testing HDT!

Art

[John_morris71 in reply to Hidden]

Art,

oh, did not know that a dose as little as 100mg has helped some people.Thanks for the input. Point noted and will consider doing what you suggest. (Anything that helps )

[Hidden in reply to John_morris71]

Actually it was just one person who reported the 100 mg dose to be effective, but there are several members who found their optimum dose at 200 mg / day!

Art

[Hidden in reply to John_morris71]

Just remember that thiamine is one of the 12 vitamins of the B-complex. If someone takes just one of those vitamins alone for a long period of time, that may cause a deficiency in the rest of the B-complex vitamins. Wouldn't be a bad idea to try a formula that already include all the B-complex vitamins. There are in liquid form including a dropper.

[park_bear in reply to John_morris71]

As Art says, high dose thiamine is the most important.

Other things you can look at in addition would be mannitol, N-acetylcysteine usually abbreviated NAC, and vinpocetine

[John_morris71 in reply to park_bear]

Thanks for the input. Tried mannitol for almost a year (with appropriate dosage related to weight) , but no encouraging development.

[Hidden]

John, some time ago I read that carbidopa used chronically depletes a life-sustaining enzyme called AADC, causing with that a severe deficiency in the enzyme and consequential deletion of a neuroprotective gene encoding the enzyme. I decided to ask Google more about AADC deficiency, and I was in shock with the answer. AADC deficiency causes an array of awful symptoms. Then i compared those symptoms with a large list of side effects induced by carbidopa and ... voila ... the coincidenice couldn't be greater.

By the way, one of the best things for the worst of constipations I know about (by experience) is called multy fiber super cleanse. The quality of the water is very important. Distilled is the best, but as well important is to find out what causes constipation in PD, in first place. I found out that mutations on an otherwise neuroprotective protein called alpha-synuclein cause this protein to misfold and accumulate in the enteric neurological system long before than in the brain, and one of the symptoms associated with protein misfolding accumulation in the gut is constipation. L-dopa and carbidopa DO NOT address any of the problems associated with protein misfolding.

[John_morris71 in reply to Hidden]

Ayekila,

Thanks for the details. Will look into it and definitely try multy fiber super cleanse.

[Hidden in reply to John_morris71]

CORRECTING ... (sorry about the mistake)

I have the bottle in front of me Multi-Fiber Colon Cleanse ... very effective ... you need to take it with at least 8 oz of water. By the way, you may address protein misfolding with curcuma extract containing at least 85% curcuminoids, adding at least 500 mg of sunflower lecithin for super absorption (don't dare to use soy lecithin. most of soy products come from genetically modified frankenstein soy). Most curcumin formulas include generous doses of boswelia serrata, an extraordinary medical food used in Ayurveda for severe inflammatory conditions (Parkinson's is one of them), but be cautious, BOSWELIA, BEING A RESIN, CAUSES CONSTIPATION ... But what's the problem, you have the remedy. Good luck!

[John_morris71 in reply to Hidden]

Thanks for the correction. Interesting to know about curcuma + sunflower lecithin. Will do some DD and try it out. I buy the turmeric root and make my own paste - so may be need to add sunflower lecithin to the paste. Good info there. Also, ginger and probiotic seems to work very nicely for constipation. The former also addressed the nausea issue for my mother once and for all in just 2 days. She never had it again.

[Hidden in reply to John_morris71]

OH, BY THE WAY, THERE IS LECITHIN IN POWDER, TOO (!!!)