My action plan to reverse the disease

Maybe Im crazy, maybe Im a genius, but here goes. Based on my personal research, I have developed an action plan for myself. Follow along if you want to, but beware, I am not a physician. I welcome any input from my friends up here. Im not putting down the doses, this will vary based on numerous factors such as body mass, severity of disease, how crazy you are, etc...not saying anyone else should do this but we should all always BEWARE OF INTERACTIONS IF YOU ARE CURRENTLY TAKING SUPPLEMENTS AND Rx MEDS PLEASE!!

1. Mannitol - to reduce the burden of sticky misfolded alpha synuclean plaque buildup in the brain.

2. PQQ - to prevent future misfolds of alpha synuclean. Also to regenerate mitochodria in cells.

3. Turmeric / curcumin - increases Glutathione, reduces alpha synuclean burden, reduces inflammation and pain.

4. Whey Protein Isolate - increases Glutathione and precursor amino acids.

5. Vitamin C high doses - powerful antioxidant.

6. St Johns Wort - reduces anxiety and apathy, restores damaged nerve tissue. Do not use if you are on antidepressants or MAO-B inhibitor.

7. Vigorous aerobic exercise -as much as possible. walking, swimming, biking, eliptical machine - key to Neuroplasticity

8. NAC - increases Glutathione, ongoing studies indicate may reverse PD.

9. Isradipine - calcium channel blocker currently in phase III trial for PD neuroprotection, may slow the death of neurons.

10. Hypnosis - I tried this and it helped so much, Im not kidding. There is a case study on the web, heres the link ncbi.nlm.nih.gov/pubmed/234...

11. Looking in to Allithione, an oil based form of B1.

12. Chiropractic care.

13. High doses of good quality fish oil.

14. Ketogenic diet

I will edit this post as i learn new information.

I am comparing the brain to a leaky bucket of water. Need to fill the bucket faster than the water leaks out. Reduce plaques faster than they can re-form and at the same time, grow new neurons faster than they can die off. There we have it! The reversal process right there. However, it may be a never ending process until some sort of gene therapy comes along.

thank you for your thoughts and feedback. I may modify the plan as I learn new things, but this is where I am so far. My final disclaimer - do not take my advice because I am not a doctor. Does that get me off the hook from ever getting sued?

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  • 11. allithiamine

  • Interesting! Looking into it. Thank you!

  • Have you tried it? Does oral work? Thank you.

  • It works as well as any of the numerous supplements, vitamins, herbs, fish oil or snake oil that currently in use. They each give PwP hope where little else is to be found.

  • Yes it does, I took it for a month and I'm giving it a rest and I will take it again. I definitely felt better Mary

  • Which brand do u use and at which dosage pls. How does it help? Thanks

  • Ecological Formulas (the only brand I know of)

    100mg twice a day/ twice a week

    I believe it works

  • I TAKE 100 MG 2X DAY FOR 2 DAYS THE SAME BRAND. WHAT DID YOU NOTICE SO FAR.

    AND ICE COLD APPLE HARD CIDER I RECOMMEND

    "ANGRY BIRDS"

  • My vision improved and strength increased as evidence of ease of entering and covering myself at bedtime. It gives me hope.

  • There are different forms of thiamine. Do some not work and some do? I have a B complex here that has 100mg thiamine mononitrate in it. You think that its ok?

  • ncbi.nlm.nih.gov/pubmed/978282

    "...Oral administration of lipid-soluble allithiamines [thiamine propyl disulfide (TPD) and thiamine tetrahydrofurfuryl disulfide (TTHF)] rapidly increased thiamine activity in whole blood, red blood cells, cerebrospinal fluid, and urine in normal and thiamine-deficient subjects. These thiamine congeners also restored red blood cell transketolase to normal in alcoholics with thiamine deficiency. Such repletion equaled that produced by parenteral, water-soluble thiamine hydrochloride (THCl) or thiamine pyrophosphate (TPP). Oral administration of water-soluble thiamines (THCl, TPP) neither elevated thiamine activity in biological fluids nor restored transketolase activity to normal in alcoholics with thiamine deficiency presumably due to their rate-limited intestinal transport. Oral administration of TPD eliminated lateral rectus palsy in patients with Wernicke's encephalopathy. Orally administered allithiamine vitamers are therefore recommended for prophylaxis and treatment of thiamine deficits because while having essentially the same biological properties as parenterally administered water-soluble thiamines they have not produced any untoward effects after long-term administration and are far more efficiently utilized."

  • and I can brush my teeth with my right hand without my hand "freezing". Normally I brush my teeth with my left hand or use electric tooth brush. Yesterday I caught myself brushing using my right hand. I was surprised. I thought before I tell my wife the good news I will wait and see next time. Next time was the "proof in the pudding". Add that to and thank allithiamine.

  • Hallelujah, Brother!

  • I take it to waiting forever

  • Catlou you've been taking it a long time and having no positive effect?

    RoyProp How long have you been taking it?

  • maybe 3 months

  • Same here your the one Roy who suggestestrd this type.

  • A member of weareparke a group from Italy told me about it. I ordered it from England from biovea. It's a vitamin B1 High potency 500 mg with magnesium 100mg. He told me they are as good results with that as with injectable B1 period I decided against injectable B1 because in us they are all made with aluminum.

    Www. Biovea.com

    1 800 961 4750

  • Do you notice a difference? Is it worth taking? Thanks Deb

  • I think I have noticed the difference I think I'm feeling better sorry to be sounding so wishy-washy. I have started it again after not taking for about 3 weeks. I will take it for about a month now again. Mary

  • What is pqq ?

  • google.com/amp/michaelrucke...

    Here is some basic info to start

  • Also - have you heard of mucana - natural levodopa ? I also read good research on light therapy

    .

  • Yes, mucuna is great for symptoms but is it a cure? I dont think it treats the cause. I do take it once per day. I looked into light therapy and i dont think its practical, and not sure the benefits are long term, if it even really works. Retinas prodhce dopamine, says the theory, but does it get back to the parts of the brain where we need it?

  • What about problems wiith vision like depth perception, and having all things look fuzzy or like u r underwater? Neuro-ophthalmologist reviewed hubby's records from regular eye doctor we have seen for years who also happens to be an ophthalmologist. This neuro said we don't need to see one that we need to see a cornea specialist. His vision has been corrected and these things continue. we see with our brains, not with our eyes.

  • Levity is the best of healers, keep your good mood going my friend. If you feel better keep doing what you did.

  • Simple but effective advice👏🏻🙋🎈

  • Sounds like a good plan to me. What about diet? A relative of ours is trying to convince us to go vegetarian with no dairy at all.

  • I have seen evidence of ketogenic diet being good for brains, as well as anti inflammatory diet. Probably good to avoid dairy, gluten.

  • I went the keto route with no good accomplished. I will not go gluten free.

  • Personally i run best on ketogenic, but its difficult to stick to with kids and living in America!

  • Good list! I would be concerned about whey protein isolate/concentrate/extract since these products contain glutamate which is excitotoxin and after the age of 50 supposedly the body's ability to tolerate excitotoxins declines.

    I would also be concerned about vitamin E - there is a lot of controversy about it supplementation - some studies show that it might be increasing inflammatory cytokines in some genotypes:

    "In healthy control subjects, the effect of α-tocopherol supplementation on the production of inflammatory cytokines appears to be dependent on an individual's genotype. These genotype-specific differences may help explain some of the discordant results in studies that used vitamin E."

    ncbi.nlm.nih.gov/pubmed/225...

  • I like your plan very much. Not sure about St John Worth, vitamin E, Vitamin C though.

    I would (will?) definitely add intermittent fasting to the treatment.

    Rationale for IF :

    ncbi.nlm.nih.gov/pubmed/205...

    Keep us posted !

  • yes intermittent fasting. i lost almost 20 lbs so far but i ' m not hungry, ,more so in the morning. so i eat 1 meal i really like and try to keep under 600 caloris tonight is pizza delivery. too hot out. 95-98 degrees. and i love crab cakes. dockside has them premade at most grocery stores. 4 f0r about $8. had a slice cinnamon toast with cream cheese and blueberries. good coffee with carmel creamer and manitol which im almost out of. saw manitol sippy sticks on Amazo. back to my Angry Bird. google it.

  • Love crab cakes too ! :-)

  • Mannitol sippy sticks on Amazon? Like freeze pops? Vs powder?

  • Most concise, realistic and understandable plan of action I've seen so far, looks like you have done a lot of research. This is just what I've been looking for. Will look into this and follow with interest.

  • You forgot vitamin b complex ,magnesium and CBD. My sense of smell has come back since CBD. Not sure about vitamin c and e.

  • I agree about the vitamin B complex, especially if you have damage from Carbidopa. I have not looked into Mag. I cant take CBD because of my job.

  • look into macuna puriens.

  • Try Non THC CBD - Hemp

  • mine too. weird. the CBC helps with anxiety, B complex plus B12 a few days/wk.

  • Does Non THC CBD work?

  • I believe that it does. now using CW Everyday Plus. its stronger. there is no "high". it is neuroprotective. also use organic canadian hemp oil. I think I am also getting a benefit from the lima beans. it takes several hours to work but keeps tremor down for many hours. noticethe mornings are better if I take the bean smoothie before bed. its all guesswork as I seek to understand how all this affects me.

  • what is your dosage on CBD.? How long to get smell back?

  • dropperful (20 drops) of the Everyday Plus from CW. add some thc drops if needed.

    dont smoke or vape

  • Will Reputable companies deliver THC drops across state lines (I wonder)?

  • I think it is against the law :( unless you have a friend willing to help.

  • the Everyday Advanced uses less. the recommendation is 5 drops

  • Coconut oil, meditation. Cannnabis. Oil,

  • I have eaten a sht-ton of coconut oil over the past few years and didnt do zip for me. Although the theory looks good.

  • changed from Coconut oil to organic canadian hemp oil plus fish oil and CharlottesWeb CBD

  • how much coconut oil do you take a day pls?

  • CBD w or w/o THC?

  • CBD oil - w or w/o THC?

  • Dosage of each please?

  • 3T/d Coc Oil?

  • Thanks for all the info. Can u pls send us the dosages that you take. Have you noticed an improvement. Of all of these supplements which one is the most important do you think. Thanks

  • Charlottes Web CBD...ck the dosage as Everyday Plus is not as concentrated as Everyday Advanced. to the bottle I add some cbd with thc oil. since I am not medicated yet, I use the thc mix to help with the tremors, anxiety and appetite. the plain cbd oil as a nutritional supplement, but it helps even without the thc. I have been using the enhanced mix for about 6 months .

  • How long have you been trying your method and what results can you report? Thanks

  • Honesty, the first session of hypnosis did the most good. Freed me from the dreadful unfounded anxiety and reduced my r leg tremor a great deal. Ive been on some of the items six months, some six days. Like i said, its ongoing and you have to replace the water faster than it leaks out of your bucket. There is no "cure" that i have found. Yet

  • i cant believe i just typed s full page on hypnoterspy and its gone. well i dont have time now but i have all the books an over the next few days i will try to post for free to all my parkison friends some methods/suggestions for self hypnotherapy. i owe St Jude a favor in his name.

  • Looking forward to it thanks

  • Looking forward to it too !

  • But, my friend. Take note. All placebos (via a positive attitude, a hopeful attitude, faith, happy friends, hope via sugar pills) improve your outlook/function by 40% over baseline in most blinded PD studies. Choose the right stimulus and you have no significant costs or side effects. I am a surgeon retired by PD. Looking for next mission that is not influenced by lack of nimble fingers.

  • Im all for placebos!

  • Ah beware: the Placebo!

  • I love the attitude ,if im going down im going down swinging ..heck ya

  • recently diagnosed as well. Also in your frame of mind trying lots of things to arrest progress. And most of them are on your list! I make a green smoothie in a.m. with 1/2 c. canned and drained lima beans, veggie juice, avocado, fresh pineapple, banana, kiwi, kale, berries, papaya, hemp seeds, vit c. I make a big blenderfull. divide it into 3 jars, freeze two. saves labor and mess... CBD oil first thing in a.m. for anxiety. A couple of tbsp of beans with lunch. Flat beans are a natural source of dopamine.

    I exercise 2x a day, walk, bike, swim, weights etc

    I have found three products from "Life Extension" helpful. DopaMind, Mitochondrial Optimizer with bqq and Super Ubiquinol with Bqq. I also take Lions Mane and Phosphotydl serine/Choline with NA Cysteine, Carnitine and Choline which I rotate. I take niacin and fish oil at night with melatonin (4x wk.) so far my energy is lots better, tremor is reduced by the beans and CBD, general outlook better and Neuro says keep doing what works. My next step will be Macuna Puriens and Isradapine. Good Luck to us and all the others seeking answers...

  • It was my thought that I would drop my first dose of alprazolam. Who needs anti-anxiety first thing in the morning? ME

  • yeah, thats me.. surge of energy upon waking that is over the top. I take a dropper of cbd oil with a very scant amt of enhancement. since I added the beans, the tremor is ever so much better as well

  • May I ask what kind of beans, fresh, frozen or canned?

  • the fresh ones have cyanide in them that has to be cooked off before eating. no kidding.! I used canned, unflavored flat beans (butter beans, lima beans, etc). been doing this for 2 weeks. 1/2 cup per daily smoothie. starting to slowly get back my energy and hand tremor is better. we will see where this goes, but at the minimum, its packed with nutrition and helping me to keep my body healthy.

    I am one giant one personal clinical trial. :).

  • I take Irasdipine even tho the data is weak. Look into Inosine. The data is more robust. Also, check out UDCA. U of MN is beginning a trial. TUDCA is the same thing as a supplement. I hope your stack works for you.

  • We have as many anti Parkinson's protocols as we have number of people on this list. Something just has to work. Here is another one and it is prayer. It has always been very hard for me to pray. People that have Parkinson's can be very spiritual, I always lacked something in me.

    I have found a book by Lisa Barnet "From questioning to knowing"

    73 prayers to transform your life.

    The prayers were given to Lisa by the akashic records Masters, she just wrote them down. If anyone is curious you could take a look at the book on the Amazon. They are more Spiritual than Physical prayers. However you do get a physical cure

    They give you directions for opening up your heart to start the prayer.

  • Never underestimate the power of prayer

  • ARE YOU TAKING ANY MUCANA. WHAT AND HOW MUCH.

    PLAN - WAITING FOR ECGC

    MORNING AND LATR AFTERNOON - MUCACA ? DONT KNOW HOW

    MUCH OF THIS WITH 1 ECGC KRILL OIL & ittamin c

    at lunch and betdtime - WILL TAKE MP WITH QUERCET W/BROMELADE

    STILL WAITING ON DELIVERY

    I HAVE ISRAPADINE & NAC

    WILL GET PPQ

  • I take 2 capsules of now dopa mucuna first thing in the mornings. If you dont have egcg yet, drink a cup of green tea. Its just as good or even better. Egcg comes from green tea.

  • Anyone has idea & personal experience on taking Vit D3? I have been living with PD for about 8 years. I started to take D3 for a month. Not notice any change yet.

  • I have been taking D3. Cant hurt but no profound effect.

  • Yes vitamin D3 is far better than plain D (which is toxic by the way in larger dosages). The best Vitamin D3 is from sunshine, so to try and get a 1/2 hour in daily - sit outside with bared arms, legs (from knees to feet) and face exposed ... any time you can do that is great: reading a book, knit or crochet, talk on phone, etc., whatever to make that 1/2 hour fly - it will be a great time for R & R for de-stressing which is important.

  • Welcome bassofspades to the world of reversal. I do not claim to have reversed my PD but am managing withou meds for 11 years. Was diagnised in 2003 and stopped meds in 2007. Exercise, yoga and diet all help a lot. Will send link to my story "My Tryst with PD" shortly

  • The link to the article is

    Link: helplibrary.blogspot.in/201...

    Pls let me know how you are faring

  • What a journey. Mary

  • NAC is interesting. I am taking 600 mg (pill form) 1x morning and 1x bedtime to mirror a clinical trial which began over a year ago. The trial, which was a combination pill and infusion, showed promising results:

    "This study reveals a potentially new avenue for managing Parkinson's patients and shows that n-acetylcysteine may have a unique physiological effect that alters the disease process and enables dopamine neurons to recover some function," said senior author on the paper Daniel Monti, M.D., M.B.A., Director of the Myrna Brind Center of Integrative Medicine, and the Brind-Marcus Center of Integrative Medicine at Thomas Jefferson University.

    In this study, Parkinson’s patients who continued their current standard of care treatment, were placed into two groups. The first group received a combination of oral and intravenous (IV) NAC for three months. These patients received 50mg/kg NAC intravenously once per week and 600mg NAC orally 2x per day on the non IV days. The second group, the control patients, received only their standard of care for Parkinson’s treatment. Patients were evaluated initially, before starting the NAC, and then after three months of receiving the NAC while the control patients were simply evaluated initially and three months later. The evaluation consisted of standard clinical measures such as the Unified Parkinson’s Disease Rating Scale (UPDRS), a survey administered by doctors to help determine the stage of disease, and a brain scan via DaTscan SPECT imaging, which measures the amount of dopamine transporter in the basal ganglia, the area most affected by the Parkinson’s disease process. Compared to controls, the patients receiving NAC had improvements of 4-9 percent in dopamine transporter binding and also had improvements in their UPDRS score of about 13 percent.

  • I'm taking a granular form of NAC (in water) twice a day for the last week. Generally feel better but has also totally eliminated my thick spit and drooling at night. Mouth feels cleaner all the time. First morning I had very very dry mouth but this has stopped now.

  • Israpidine is also a clinical trial underway and is a drug used to treat high blood pressure. Anyone with high blood pressure and PD should ask their doctor for Israpidine according to the literature.

  • What about starting to do regular exercise?

  • Of course! Thats on my list as #7. Best way to regenerate neurons.

  • It looks like they took all the snake oil cures and the desperate people and put them in one place, which is handy in case you want to go back to 1890. Have you considered that you might be poisoning yourself ? What does your Doctor, think about this. You are quite sure you understand the interactions ,side affects and long term affects of all of that. Are you going to mix it all together in a big vat or take each one separately or just soak in it ?

    This is without a doubt the most ridiculous post that has appeared here:

    - did not even include Garlic, Witch Hazel, eye of newt, coconut oil, A535, anything from the onion family ,tobacco, coffee, or bats wings , ridiculous, although it had to happen eventually. Thank goodness for the Food and Drug Administration.

    Lets have a vote

    1/ This is a foolish idea that could hurt someone ( Hit like on this reply)

    2/ I am dead wrong and should be more careful that I might upset some one and should be more sensitive and politically correct ( hit like on the the first post or hit report here.)

    enough

  • Seriously, i appreciate your feedback. I could take traditional symptom treating meds approved by the fda and continue to get worse or i can take matters into my own hands and fight with everything ive got. I may kill myself trying but i will not give up and submit to a fate of being unable to control my own body. There is research out there for us to pore through. I will make myself a human chemistry experiment if there's one chance in a million that i can beat this thing. And i will .watch me. The good lord only gives us s challenge if he thinks we can handle it. Maybe i got this disease for a reason, and that is to find a way through this and take others with me to victory. God help us all.

  • Oh a mission from God. Well that's a completely different thing. Sure go ahead. Great idea.

  • Thats right, and im getting the band back together! Lol

  • Thank god for that too

  • Interesting plan. Have you taken into account the need for a transport mechanism across the blood / brain barrier?

  • Egcg, my friend!

  • I am now feverishly studying Dr Hinz's amino acid protocol. Its very complicated, requires precision and lots of lab testing to get the balance perfect. A very individualized approach is crucial. Hard to just screw around with.

  • Thank you for sharing I want to follow your posts.

  • you are welcome. We're all in this together and if we all put our heads together, we will win the battle.

  • I've been using almost all of the same supplement and therapies, and the several more. I'm finding that using a dual approach of neuroprotective suppliments, and dealing with alpha syncnuclean has helped improve my symptoms tremendously. I am suprzed you have not looked at Mucuna and the Hintz protocol?

  • @Chandleram Oh i sure have! I use mucuna daily. As for the hinz protocol, it looks like it requires careful monitoring to get it right. Tell me how you approached that please.

  • They say "massive doses" owner how much they were using? ultimaedizione.eu/costantin...

  • 100 mg 2x day, twice per week is the consensus here. The article seems to suggest 10mg per kg.

  • Can I add that I wd choose whole food vit C, like acerola powder or Camu Camu powder.

    Also I take Magnesium Malate, and about to start magnesium threonate. I also have Epsom baths, interspersed with magnesium chloride baths. Epsom baths detox the body mag chloride puts magnesium into the body.

    Hope this helps

  • When taking any magnesium supplement internally -- be sure to include citrus: orange juice, mandarins, grapefruit, grapefruit juice, (any fresh-squeezed juice is preferred here over pre-packaged or concentrate) tangerines, navels, etc., in conjunction, so magnesium malate is absorbed properly. Otherwise the body sloughs it off. Good luck!

  • How does magnesium help halt or reverse pd progression?

  • Great list. Might prove pricey to do them all though but we're worth it as the advert says.

    Another one for you - Trazadone. I have trouble sleeping, or rather staying asleep, and felt I hadn't had a good nights sleep for 3 or 4 years - long before diagnosis. Mentioned to my PD nurse who recently prescribed a new medicine for sleep - or rather a very old one repurposed.

    She had also that week been reading the research into Trazadone and PD and couldn't see the harm given it has so few side effects and is already used for insomnia (off label) but could potentially stop my condition from getting worse.

    First week I took half a 150mg tablet just before bed (recommended to). Didn't help me sleep and just left me groggy.

    Second week I took the full tablet. Knocked me out (especially after wine) and kept me asleep all night. Woke up, slightly bleary eyed but feeling refreshed - and almost symptom free (FYI, most people don't guess I am a PwP as I'm generally still well and capable enough to hide my issues).

    This lasted for about 2 weeks in total before fading off a bit. It no longer knocks me out (unless after wine) but I still sleep the whole night through although not as deeply as at first. I will wake if my children disturb me which I prefer.

    I don't feel as refreshed or well as I did the first 2 weeks but it is still a vast improvement on before I was on it. Whether the long term effect of stopping the degeneration pans out only time will tell but the sleep benefits alone have been worth it.

  • Wine is a good theraputic. Must be the resveratrol, plus it relaxes us a bit. I just drink a small glass once or twice a week and i always feel better the next day. Alcohol usually amplifies the effect of medications, especially sleep meds. Personally, i have more trouble staying awake than falling asleep. I recommend you try a session with a hypnotist. I promise you, it helps!

  • Most excellent summary.

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