I Can't Keep Up This Stack :(: Update 6/2... - Cure Parkinson's

Cure Parkinson's

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I Can't Keep Up This Stack :(

Bolt_Upright profile image
54 Replies

Update 6/29/22: Berberine may be neurotoxic. It is off of my stack: healthunlocked.com/cure-par...

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You all are so much stronger than I am. Or maybe you are living your lives instead of obsessing over things that can't be changed. I know I got carried away with supplements, but no more. It is just too much. (for those unfamiliar, I have not been diagnosed with PD. I have REM Sleep Behavior Disorder, a sore left shoulder and leg, poor balance, and seborrheic dermatitis).

So here is my new simplified stack.

1. Follow the Solar Cycle: I get up when the sun comes up. Got to bed no later than 11:30 PM. Wear blue blockers after 8 PM.

2. Specific Carbohydrate Diet: Has been shown to normalize the microbiome. I have been moving towards carnivore.

3. Circadian Diet: Only eat when the sun is out.

4. Intermittent Fasting: Only eat during an 8 hour window. Usually sometime between 10 AM and 6 PM.

5. Broccoli Sprout Tea (or a bowl of raw broccoli sprouts) for Sulforaphane: Drink it between 8:30 AM and 10:00 AM so I am boosting Nrf2 while my circadian rhythm is on the upstroke.

6. lactobacillus Casei Shirota (Yakult): Anti-bacterial, anti-fungus, anti-inflammatory, anti-viral, reduces cortisol levels.

7. Dr. Matthew Best Prebiotics and Probiotics for Women. It has (among other things):

- Lactobacillus acidophilus

- Lactobacillus reuteri

- Bifidobacterium bifidum

- Lactobacillus fermentum

8. Berberine: 400 mg. Neuroprotective. Note to self: Identify more reasons why you are taking this. May need to take a break from this after 12 weeks

9. Vinpocetine: 30 mg (with food or your body absorbs nearly none of it). Supposed to increase blood flow to the brain.

10. 2 teaspoons of Brewer's Yeast on my food once a day.

11. Niacin 250 mg Time Released: 1 hour before bed.

12. CBD Oil: Right before bed.

13. Exercise: 20 minutes on the treadmill. Long walks when the weather is nice.

14. L Methylfolate (Starting today. Should help with depression and lower homocysteine levels).

15. Magnolia Bark Extract.

16. S Boulardii.

17. Cod Liver Oil.

18. B12.

These are the things I am taking a break from:

19. High Dose Thiamine (B1): Currently 1500 first thing in the morning, taken with 2000 mg of Magnesium L-Threonate.

20. Selenium plus Inositol: 100 mcg L-Selenomethionine plus 750 mg Inositol: May lower anti-thyroid antibodies (I have Hashimoto's).

21. Curcumin BCM-95: (BCM-95 means it has Curcumin oil in it) 650 mg. Antioxidant.

22. Saffron: 50 mg.

23. NAC 1200 mg with Taurine 1000 mg: 1 hour before bed.

24. Mixture of 1 teaspoon ground Chamomile Flower, 1/2 teaspoon ground Nigella Sativa, and one teaspoon Ceylon Cinnamon (my teaspoons are heaping), and 600 mg of Organic Licorice Root Extract 20:1 Powder. I just eat this dry a little at a time with a spoon twice a day (well before my first mean and well after my last meal). I chew it some and let it sit in my mouth as long as possible so it goes down my throat slowly. These are all antibacterial, anti-fungal, and anti-inflammatory. I'm trying to treat my microbiome from gut to mouth.

25. Exercise plus Red Light: 20 minutes on the recumbent bike with the red light shining on the back of my head. I follow this with hydrogen water.

I stopped Melatonin again also. I don't know why, but I feel it makes my depression worse.

I feel good about my top 18. Fingers crossed.

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Bolt_Upright
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54 Replies
Lizzy9 profile image
Lizzy9

You are Brave!! My HwP is doing very well so I'm not changing anything right now.

Keep us posted of any changes and what you can (if so) attribute them to.

Have a fabulous weekend ~ blessings

Gail

Bolt_Upright profile image
Bolt_Upright in reply toLizzy9

Thank you Gail! Yes, good idea sticking to what is working for your HwP. Good luck and you have a great weekend also.

Astra7 profile image
Astra7

Still so many! I dropped to just melatonin and NAC, with occasional Mg and CBD (and my meds).

Otherwise I felt all I was doing was taking things.

Has anything helped with balance?

Bolt_Upright profile image
Bolt_Upright in reply toAstra7

Yes, still too many :)

One thing about taking so many is the ratio of food to supplements gets crazy. It seems unnatural.

There is a good chance I have had crap balance since I was a child. I could never even walk on a downed tree without falling off.

Shorebird profile image
Shorebird

You are very strong in my opinion. The mere fact that you are being so proactive shows incredible strength and bravery. I am relatively new here - but I have really appreciated your sharing. Take good care.

Bolt_Upright profile image
Bolt_Upright in reply toShorebird

Thank you Shorebird. I always hope my posts are helpful to others.

Is there science behind what you are taking a break from or are you just choosing to take a break? Why take a break from magnesium?

Bolt_Upright profile image
Bolt_Upright in reply to

I don't know if there is science behind my choices. Hopefully there is logic. I wanted to take more time to cut the list down, but I just could not wait so I kept the things I could not force myself to cut. I still have some faith in things I cut, but if you forced me to pick 18 from my list, the ones I kept would be those 18:

5 of the 18 are lifestyle changes. Can't go wrong with those, and they don't weigh down my psyche.

I will go through the list tomorrow and write up why I could not cut the remaining 13 items.

Gioc profile image
Gioc in reply toBolt_Upright

Perhaps you should relate them to a context of the function and structure to which they apply. For example, the B1, taking 2000 mg of thiamine which is by definition "the spark plug that starts the engine" and zeroing the sugar which means turning it off is contrasting in the context of cellular energy function for example. So you have to choose if you want more energy and an "engine that running and doesn't hit in head" or a stopped engine that doesn't wear out, maybe . There is always a real situation of Structure and Function that must be understood in order to better align things. It is not the short road but the one that goes through the problem that leads us out.

🌍
in reply toGioc

Homeostasis

Gioc profile image
Gioc in reply to

CC, you can be right.

Let's contextualize homeostasis a little. Who controls homeostasis?

treccani.it/enciclopedia/co...

Just what was injured in PD, the brain.

Bolt_Upright profile image
Bolt_Upright in reply toGioc

Thank you for the good advice Gio. You seem to be doing well. Can you please tell me what would be on your list?

Gioc profile image
Gioc in reply toBolt_Upright

Better not, you would be very disappointed.😁

Bolt_Upright profile image
Bolt_Upright in reply toGioc

I think your list is very short. Sunshine and Niacin?

Gioc profile image
Gioc in reply toBolt_Upright

Hi Bolt_Upright.

I have the PD ,

and I will not answer the question as you would like because I see that you love to make lists and then cancel the items with yes / no / maybe. The speech is serious should not be done in person, but we do what we can. Let's get to the point. To make a list, you need a question, like 'what disease could I have, doctor?' And so you make a list. But what if all the items are wrong? We may forget the question over time, but we keep searching and listing in answer without knowing what the original question was, to which we didn't get a correct answer the first time.

Very upsetting for the person.

Tip:

1) stop making lists.

2) face life as it is now and resolve.

Keep in mind that what I write may fall into a list of wrong answers if it seems so to you.

PS. If someone thinks this answer incomprehensible and lunar, yes it is.

Bolt_Upright profile image
Bolt_Upright in reply toGioc

Thank you Gio (and apologies). You always provide wisdom and I appreciate that.

Most of the reason for cutting my stack was to get me away from obsessing. I think it is helping!

Do you like to travel by Streetview? In Kampala the temperature rarely goes below 60 degrees or above 88 degrees. I would so like to forget all of this and live in Kampala: google.com/maps/@0.2741945,...

Gioc profile image
Gioc in reply toBolt_Upright

wonderful thank you.

It's my favorite sport and I call it: “creating new spaces by changing point of view“.

I'm the best after you. I am serious.

There is nothing to apologize for, there is nothing wrong with what you do, indeed it is highly appreciated by many and especially by me.

I understand your upset and I know how difficult it is to manage. But there are things that look huge but are just shadows of the mind.

Just as you create space by controlling what to look at, so you can control the shadows by directing your attention out of your thoughts and towards things, objects, animals, plants, rocks.

What would I step up on your list?

certainly point 13 # by multiplying it x5 outdoors by observing things carefully.

If done every day several times a day, even for a short time, it could make a lot of difference. the key point is extroversion of one's attention from oneself to the environment, it's not easy. !! but it works!

Bolt_Upright profile image
Bolt_Upright in reply toGioc

100% agree Gio!

I was watching "The Professor" playing basketball yesterday. Everybody playing basketball and sweating and thinking about basketball. Basketball and landscaping my yard, that will be my summer (starting on Monday!).

If you have never seen The Professor, he is pretty cool: youtu.be/pFX4CC5UiOY

Gioc profile image
Gioc in reply toBolt_Upright

LoL very funny, I stayed with the Harlem globe-trotters. 😁

A warm greeting from Italy.

Como lake Today -2 + 12 degrees centigrade.

Lungolago Europa

goo.gl/maps/8T1BTcQVx1HDzhRC8

google.com/search?rlz=1CDGO...

Bolt_Upright profile image
Bolt_Upright in reply toGioc

Very nice! I am going to walk around and see if I can find George Clooney's house :)

Traghetto
Gioc profile image
Gioc in reply toBolt_Upright

😂 LoL

That is Villa Oleandra is on the other side of the lake. It's dinner time here and there's a good restaurant upstairs near the Rockefeller foundation.

bellagiolakecomo.com/en/bel...

rockefellerfoundation.org/b...

in reply toBolt_Upright

Am I looking for reasoning when maybe this is emotionally based? I don’t know of any rationale in a break from magnesium , NAC, selenium & curcumin. Since you shared that you are ceasing these, can you share any reason based on research? I’m asking because does this apply to others as well? Concerned others will follow your lead and stop things that are important like magnesium based off of your sharing this news despite no reasoning other than apparent burn out. I’m concerned for everyone’s wellness.

Gioc profile image
Gioc in reply to

Everyone who?

in reply toGioc

PWP who like me, really value Bolts contributions and are therefore inclined to follow his lead.

Gioc profile image
Gioc in reply to

so I understand better. IMHO if there is a group of which Bolt is the opinion leader, it is right that he motivates his decisions to the people of this group.

Smittybear7 profile image
Smittybear7 in reply to

I do also.

Bolt_Upright profile image
Bolt_Upright in reply to

Thanks CC. Good point. I added a reply to explain my logic and lack of logic. Thank you.

Grumpy77 profile image
Grumpy77 in reply to

But he doesn't have PD... if you have PD then no matter how wise his list of choices are, you have to note that he has chosen them for REM and other things not for PD

Also Bolt hasn't explained why he dropped exercise- an essential for all PwP and red-light therapy- which has helped me (to some large extent) overcome brain fog

Bolt_Upright profile image
Bolt_Upright in reply toGrumpy77

I kept exercise. I dropped the exercise with red light for no good reason except I am depressed and it is too much for me.

I hope I do not have PD, but I have more symptoms than just REM Sleep Behavior Disorder. But I agree that nobody should be following my lead.

Grumpy77 profile image
Grumpy77 in reply toBolt_Upright

Thanks for clarification

Dap1948 profile image
Dap1948

I think you’ve thrown the baby out with the bath water and you are keeping a lot of useless bath toys!! 🤣😂 But then I would!

Bolt_Upright profile image
Bolt_Upright in reply toDap1948

I think you might be right!

Missy0202 profile image
Missy0202

Sometimes gut feelings are the right ones to listen to. I hope your new regime proves to be great for you!

Bolt_Upright profile image
Bolt_Upright in reply toMissy0202

Thank you Missy. I do believe in the supernatural. I am so looking forward to Monday when it will be warm and I can spend the day outside not thinking about this.

Agnes1234 profile image
Agnes1234

Just curious...what do you estimate is the monthly cost for all of these?

Bolt_Upright profile image
Bolt_Upright in reply toAgnes1234

Good question. Most of the things I kept were fairly cheap. I am going guess here:

- Dr. Matthew Best Prebiotics and Probiotics for Women is about $25 a month.

- Yakult is about $18 a month. Less if you turn it into yogurt.

- S Boulardii is maybe $10 a month.

- Berberine is maybe $6 a month (more if I took it twice a day, but I don't).

- Vinpocetine is maybe $6 a month (more if I took it twice a day, but I don't).

- B12 is so cheap. Big bottle of tiny pills.

- Niacin about $8 a month.

- Magnolia Bark Extract about $8 a month.

Dang. $80 a month!

ForViolet profile image
ForViolet

That's interesting that you are eliminating the thiamine rather than adjusting the dose. It just hit me cuz thiamine has helped my husband. For example, he was unable to swallow pills without choking, but when he started thiamine he was able to swallow better within a day.

He's taken magnesium for many years to help with muscle cramps and now it's still part of his "packet". He used to take it at bedtime, but it began to bother his tummy, so he takes a little with his morning B1 and a little with his afternoon B1.

He did a trial of boulardii and maybe it did him some good, but nothing he noticed.

I can see the merit in your wanting to simplify for sure. It will be interesting to see how it goes and you'll learn a lot.

Bolt_Upright profile image
Bolt_Upright in reply toForViolet

Thanks for sharing that B1 works ForViolet. I think HDT is probably the most likely great thing I cut from my list. I might add it back. It is a morning supplement, which fits with my plan.

PalmSprings profile image
PalmSprings

I say try what you think works for you! Best of luck and I hope you feel better!

Bolt_Upright profile image
Bolt_Upright in reply toPalmSprings

Thank you PalmSprings!

Bolt_Upright profile image
Bolt_Upright

To anybody who thinks I chose my list of things to keep in my stack scientifically, or that this new list is a recommendation, please do not think either of those things.

CC made a good point. I am burnt out. As the title of my post said, I "can't" keep up this stack so I had to cut things.

I believed in all the things that were in my stack, so by cutting a bunch I did cut things I believed in. Especially B1 and Cinnamon.

I made my choices on what to keep based on my symptoms, my philosophy on root cause, and where I am on this journey:

- My main symptoms are RBD, sore left arm, sore left leg. Magnolia Bark Extract should help me sleep and also has evidence it might help with PD: healthunlocked.com/cure-par...

- I believe my condition started with a pathogen combined with lifelong gut dysbiosis. The 3 probiotics I am taking address both pathogens and gut dysbiosis. Berberine is also good for gut dysbiosis and leaky gut AND for pathogens.

- I have major depression. Magnolia Bark Extract is supposed to help with depression. L Methylfolate should also help with depression, lower homocysteine levels, and I think lower cortisol. I think lowering homocysteine is a big deal and there are studies showing L Methylfolate lowers homocysteine in people with Hashimoto's (like me).

- There is too much good information out there on sulforaphane. It is good for gut dysbiosis, inflammation, pathogens, etc... so I had to keep the broccoli products.

- Niacin has the Auburn study going for it. That was enough for me.

- B12 is like a little piece of candy.

- Cod liver oil (or Krill oil) is omega 3. Everybody seems to believe in them.

I wanted to get down to a list of supplements I could be done with at my first meal of the day. So some when I get up. Some more when I eat. Then I don't think of them the rest of the day until I go to bed (when I take my Niacin and Magnolia Bark Extract).

I am also thinking of skipping supplements altogether on Sundays (except for Niacin and Magnolia Bark Extract).

And I might switch out all my morning supplements on Saturday to (very slowly) use up all of these extra supplements I now have.

So to recap: I kept things I think help, and I cut things that I think help. My choices are not a guide.

kevowpd profile image
kevowpd in reply toBolt_Upright

Have you seen a doctor for the depression you describe as major?

Bolt_Upright profile image
Bolt_Upright in reply tokevowpd

Many times. For over 20 years. Thank you.

kevowpd profile image
kevowpd in reply toBolt_Upright

Ever tried supplementing with Ldopa? 20 years is a long time but maybe you've a dopamine issue?

Bolt_Upright profile image
Bolt_Upright in reply tokevowpd

Thank you kevowpd. That would be interesting if Ldopa helped. I think I am suffering more from a lifetime of making bad decisions. As I mentioned here recently: I put the ass in Asperger's. I am fairly optimistic about the L Methylfolate. Thank you so much.

BDSLD profile image
BDSLD in reply toBolt_Upright

I have had major depressive episodes multiple times which have been helped with SSRI's but what I think was missing was dopamine.Since taking Levadopa/Carpadopa I have not relapsed and have been in the best mood.

Bolt_Upright profile image
Bolt_Upright in reply toBDSLD

Thank you so much BDSLD.

wifeofparky profile image
wifeofparky

did you add all this stuff in groups? You should never add or delete more than one supplement at a time and document how you felt when you stopped or started it and how you feel after you stop it. You take a lot of stuff that you should be getting by eating a well balanced diet with plenty of vegetables and fruits (eat your colors).

Bolt_Upright profile image
Bolt_Upright in reply towifeofparky

Thanks. I am not sure about adding and subtracting one at a time, as sometimes combinations may be effective. Maybe. I am drifting towards carnivore, or carnivore plus greens.

Bolt_Upright profile image
Bolt_Upright

Okay, I added most of my supplements back:

19. High Dose Thiamine (B1): Currently 1500 first thing in the morning.

20. Selenium plus Inositol: 100 mcg L-Selenomethionine plus 750 mg Inositol: May lower anti-thyroid antibodies (I have Hashimoto's).

21. Curcumin BCM-95: (BCM-95 means it has Curcumin oil in it) 650 mg. Antioxidant.

23. NAC 1200 mg with Taurine 1000 mg: 1 hour before bed.

Also added 15000 IUs of D3 a day.

laglag profile image
laglag in reply toBolt_Upright

15000 ??

Bolt_Upright profile image
Bolt_Upright in reply tolaglag

I'm somewhat reckless. Don't be like me.

Sydney75 profile image
Sydney75 in reply toBolt_Upright

I really appreciate your research! I obsess way more than my HWP, mostly because he still likes the mindset ignorance is bliss. Not really, but his Neuro MD said not to dwell on what might happen. His symptoms are worse when he is under stress, so worry about the future of PD is stress.

Some supplements hopefully delay the progression of PD, allieviate symptoms. I tend towards the supplements that are beneficial to other health issues too like berberine, turmeric, omega 3s. Keep posting, I appreciate it!

Have you tried 5HTP for depression? saffron does help mildly with mood as do Omega 3s. Every time my children had a concussion they put them on a high dose of Omega 3s. I believe the military has study Omega 3s and depression on soldiers.

Bolt_Upright profile image
Bolt_Upright in reply toSydney75

Thanks! I can't take 5HTP as I take Prozac. Time for some Cod Liver Oil though!

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