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My Alternative Therapy for SCA1 and other polyglutamine disorders.

ataxia huntingtons disease

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#1 2Sunny

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Posted 06 December 2019 - 07:52 PM


This is copied from a post I update regularly on another website, but after a brief reminder today, I have decided it deserves to be maintained here as well.  This is not a recommendation for anyone to try anything without first consulting their own doctor(s), but I will add that I am now going on almost 4 years since reversing my symptoms of a disease that is known to progress steadily once it begins so the chances that I am experiencing some type of placebo effect are very low.  Anyways here is a link to the actual post and a copy of what it says: (Also please keep in mind that the website where I maintain this post has many users with a far lower education level than that found here so some of what I have written has been over simplified intentionally.)

 

My Alternative Therapy for SCA1

 

My name is Joe Peck. I am 53 years old and in 2013 I tested positive for the SCA1 genetic mutation. I am neither a doctor nor a researcher, but I do have a strong background in science and graduated with honors from Dartmouth College. Over the last several years I have read hundreds of research papers some of which are linked below. Also, starting in 2016 I noticed early symptoms, but now I am symptom free and feel better than I have in a decade and here is what I am doing that I believe is making a difference.

 

 

First, this isn't about any one aspect. I believe it's the combination of ALL the elements listed below that are allowing me to keep my symptoms at bay. The concept of using a multi-pronged approach to treating neurological disorders was studied in 2014 by Dr. Dale Bredesen and his work is the key to what I am trying to do. In his study 10 patients with Alzheimer’s used numerous alternative therapies TOGETHER and amazingly they got better something individual therapies never before accomplished.

https://www.ncbi.nlm...20/#!po=69.3548

Second, although I just said it's not about any single element, I do believe the most important piece of this regimen is my running on a treadmill 30 minutes 3 times a week at 80% max heart rate. I use this exact type, amount and level of exercise because there is scientific evidence that it and ONLY it stops progression of a neurological disorder. That means not 70% heart rate, not 20 minutes, not cycling and not boxing, but 30 minutes on a treadmill at 80% max heart rate.

https://www.webmd.co...ow-parkinsons#1

 

I know not everyone with SCA or other genetic disorders can run on a treadmill but even if one can't run I am certain most people can stand on a treadmill and hold the handrails while walking and there is ample research showing that any exercise is better than none.

 

Aside from the concept of a multi-pronged approach the second key to understanding what I am trying to do is to understand that SCA1 is like many other neurological disorders in that at the heart of the disease is a protein that misbehaves and hangs around too long so anything that keeps the protein from misbehaving (forming an oligomer) and cleans out the protein (increases autophagy) might be helpful. It is true that if any of the supplements on my list are actually getting to the brain it is in teeny tiny quantities, but my hope and belief is that since these genetic disorders take decades to appear then maybe tiny quantities, WORKING TOGETHER, are enough to change the course of the disease. Certainly that is the basis for Dr. Bredesen's ideas. Also, it is my belief (based on the science in animals and cell cultures) that some of the items on the list work on the bad protein issue while others work to enhance general cellular survival and efficiency and still others work to provide extra energy to cells. Each piece of my regimen plays a slightly different and tiny role but, again, I think that TOGETHER they are making the difference. It is VERY hard to argue that I am experiencing some kind of placebo effect after nearly 4 years symptom free, when SCA1 is known to be one of the fastest progressing if not the fastest progressing SCA. Finally, I would note that all the supplements on my list have numerous human toxicity studies showing they are safe even at much higher levels than I am consuming, and many have human studies showing health benefits in general.

 

In 2016, I had symptoms including: inability to stand on one foot, difficulty walking downstairs, difficulty with clear speech, diminishing handwriting, fatigue, and inability to use exercise to increase strength or endurance. All my symptoms are now gone and I am gaining strength and endurance again. Here is what I am doing:

 

 

1) EXERCISE: Treadmill running 3 times a week for 30 minutes at 80% or more max heart followed by a 5 minute cool down walk (5.7 mph at 0% incline first and then 3.7 mph and 7% incline) plus additional weight training particularly leg lifts for my quadriceps and kettle ball dead lifts. Daily 20 minute dog walk. Twice weekly upper body weight training.

 

 

2) DIET: - I am now a VEGAN and am no longer eating any animal products. This includes no cheese, eggs, or fish. My primary reason for doing this was to control my cholesterol and blood pressure. I still avoid processed foods and simple carbs, and try to focus on fresh produce and whole grains.

 

3) INTERMITTENT FASTING: eating only between 3 and 7PM

 

 

4) YOGA, STRETCHING, and MEDITATION

 

 

5) SUPPLEMENTS: (amounts are daily total)

1 cup of Green Tea

40 g trehalose AM in coffee (2 heaping Tbs)

-AM&PM-

1200 mg Niagen by Chromadex (4 pills AM 4 pills PM)

180 mg bio-available curcumin (Theracurmin HP) (1 pill AM, 1 pill PM)

400 mg Ubiquinol (2 pills AM, 2 pills PM)

1333 mg NeuroMag (magnesium L-threonate) ( 1 pill AM,1 pill PM)

2000 mg taurine by Life Extension (1 pill AM, 1 pill PM)

-AM-

2.5 g thiamine HCl/vitamin B1 by Solgar (5 pills AM)

400 mg Chinese Skullcap by Swanson (1 pill AM)

-PM-

100 mg Pteropure by Chromadex (1 pill PM)

5 mg lithium orotate (the PURE brand) (1 pill PM)

20 mg BioPQQ (1 pill PM)

 

not taken for ataxia, but treatment of apthous stomatitis and general health:

1000 mcg B-12 (methylcobalamin) (1 pill AM, 1 pill PM) (contains mannitol)

1000 IU vitamin D (1 pill AM)

 

 

 

 

And, here is the science behind why I have chosen to do what I am doing:

 

 

Why treadmill running? Neuroplasticity and autophagy.

 

https://jamanetwork....bstract/2664948

https://www.scienced...71223134846.htm

http://europepmc.org...cles/PMC3232424

http://journals.plos...al.pone.0190160

http://www.exercisep...fisher_2013.pdf

https://www.ncbi.nlm...les/PMC3703838/

https://www.ncbi.nlm...les/PMC4461979/

https://www.ncbi.nlm...les/PMC5817333/

 

Why trehalose or mannitol? Autophagy, anti-oligomerization.

https://link.springe...0109-004-0632-2

https://www.globenew...e-Diseases.html

https://academic.oup.../15/1/23/613091

http://nebula.wsimg....0&alloworigin=1

https://scienceofpar...0/23/trehalose/

https://scienceofpar...05/30/mannitol/

https://link.springe...1064-015-1530-4

http://www.jbc.org/c...5/43/33252.long

https://www.scienced...044743116300446

http://www.jbc.org/c...8/24/17579.long

https://link.springe...2035-015-9173-7

https://www.scienced...161813X14001351

https://www.scienced...006291X15304666

 

 

one clinical trial of oral trehalose for vascular health:

 

https://www.ncbi.nlm...ing-08-1167.pdf

 

 

An older study that shows that mannitol passes thru the stomach wall undigested at a rate of 0.5 to 2%:

 

https://www.research...lity_for_Sugars

 

 

Why Niagen and NOT other B3s? Cellular process enhancement, Sirtuin activation.

https://clinicaltria...ogenesis&rank=1

http://www.cell.com/...4131(16)30482-X

http://www.cell.com/...4131(14)00452-5

https://www.cell.com...1247(18)30742-3

https://scienceofpar...s.com/?s=Niagen

https://www.ncbi.nlm...les/PMC4203351/

https://www.ncbi.nlm...les/PMC4113526/

https://www.ncbi.nlm...les/PMC4823968/

https://www.scienced...969996110002767

https://www.ncbi.nlm...les/PMC4963347/

https://www.ncbi.nlm...les/PMC5312101/

https://www.nature.c...1514-017-0016-9

https://www.research...mice_and_humans

 

 

Why thiamine? Anti-oxidant, cellular energy.

 

https://www.ncbi.nlm...les/PMC3604288/

http://www.advances....17/26/5/751.pdf

https://www.ncbi.nlm...pubmed/27596507

https://www.ncbi.nlm...pubmed/27488863

https://www.scienced...002090?via=ihub

https://www.scienced...197018601001206

https://www.scienced...197018610003591

https://www.ncbi.nlm...pubmed/28724340

https://www.scienced...197018616301401

https://www.ncbi.nlm...les/PMC5567484/

https://clinicaltria...otiamine&rank=1

https://www.ncbi.nlm...pubmed/27825907

https://www.ncbi.nlm...pubmed/28506637

https://fafysio.word.../11/03/im-here/

https://healthunlock...anyone-tried-it

 

 

Why pterostilbene? Sirtuin activation and anti-oxidatiion.

 

https://www.scienced...89158491731256X

 

https://www.ncbi.nlm...pubmed/27107941

 

https://www.ncbi.nlm...pubmed/29328494

 

https://www.ncbi.nlm...pubmed/29737568

 

https://www.scienced...014299916304873

 

https://www.ncbi.nlm...pubmed/29168580

 

https://www.ncbi.nlm...les/PMC4099343/

 

https://www.scienced...014299916300954

 

https://www.nature.c...e-global=remove

 

http://www.pterostilbene.com/

 

https://scienceofpar...rra-still-bean/

 

https://www.nature.c...598-018-26905-4

 

https://www.scienced...021949816301855

 

https://www.ncbi.nlm...pubmed/29315886

 

https://www.ncbi.nlm...pubmed/29210129

 

https://www.ncbi.nlm...les/PMC4981604/

 

 

Why Ubiquinol (mitochondrial health)

https://healthunlock...aking-ubiquinol

 

 

Why Green Tea? Autophagy, anti-oligomerization, anti-oxidation.

https://www.ncbi.nlm...pubmed/28633380

 

https://www.ncbi.nlm...pubmed/25030034

 

https://www.ncbi.nlm...pubmed/16893904

 

https://www.ncbi.nlm...pubmed/29263416

 

https://www.ncbi.nlm...les/PMC3289976/

 

https://scienceofpar...ns.com/?s=cuppa

 

https://scienceofpar...om/?s=green tea

 

http://www.mdpi.com/...9/23/6/1297/htm

 

https://www.michaelj...hp?grant_id=187

 

https://www.ncbi.nlm...pubmed/29363729

 

https://www.ncbi.nlm...pubmed/28835392

 

https://www.ncbi.nlm...pubmed/28667699

 

https://www.ncbi.nlm...pubmed/28238838

 

https://www.ncbi.nlm...pubmed/27364962

 

https://www.ncbi.nlm...pubmed/27268025

 

https://www.ncbi.nlm...les/PMC4983279/

 

https://www.ncbi.nlm...pubmed/26831259

 

http://www.fegt.org/...with-green-tea/

 

 

Why Theracurmin? Autophagy, anti-oligomerization, anti-oxidation.

 

https://www.scienced...064748117305110

 

https://www.ncbi.nlm...les/PMC5858819/

 

https://www.ncbi.nlm...pubmed/26728250

 

https://www.ncbi.nlm...les/PMC6051027/

 

https://www.ncbi.nlm...pubmed/24008671

 

https://www.ncbi.nlm...pubmed/28204864

 

https://www.michaelj...hp?grant_id=539

 

https://www.tandfonl...rnalCode=ktib20

 

https://www.ncbi.nlm...pubmed/29027056

 

https://www.ncbi.nlm...pubmed/28409389

 

https://www.ncbi.nlm...pubmed/28818104

 

https://www.ncbi.nlm...pubmed/27338805

 

 

Why lithium (autophagy enhancement, cellular health, GSK3 inhibitor)

 

https://healthunlock...lement.-lithium

 

https://www.ncbi.nlm...les/PMC3867580/

 

https://www.ncbi.nlm...pubmed/27878228

 

https://www.ncbi.nlm...pubmed/23812869

 

https://www.lifeexte...eration/Page-01

 

 

 

Why Chinese Skullcap? Autophagy, anti-oligomerization, anti-oxidation.

https://www.ncbi.nlm...les/PMC6025220/

https://www.ncbi.nlm...pubmed/29545515

https://www.ncbi.nlm...pubmed/24406245

https://www.ncbi.nlm...les/PMC2573395/

https://www.ncbi.nlm...in AND oligomer

https://www.ncbi.nlm...les/PMC5577282/

https://www.ncbi.nlm...les/PMC5566482/

https://www.scienced...006254?via=ihub

https://scienceofpar...2/01/baicalein/

 

 

Why PQQ? Mitochondrial health and memory.

https://www.ncbi.nlm...pubmed/27526146

https://www.ncbi.nlm...pubmed/26782228

https://www.scienced...955286313001599

https://www.function...es/56592277.pdf

https://www.scienced...028390816301654

 

 

Why taurine? Anti-oxidation and muscular health.

https://www.ncbi.nlm...pubmed/11274790

https://www.ncbi.nlm...pubmed/24032423

https://www.ncbi.nlm...pubmed/16337998

https://www.ncbi.nlm...pubmed/22903433

https://www.ncbi.nlm...pubmed/29568078

https://www.ncbi.nlm...pubmed/26004911

https://www.ncbi.nlm...pubmed/19239132

https://www.ncbi.nlm...pubmed/28979213

http://www.lifeexten...Taurine/Page-01

 

 

Why nano-magnesium (Magtein) ? Cellular process enhancement.

 

https://www.ncbi.nlm...les/PMC4927823/

 

https://www.ncbi.nlm...pubmed/27458051

 

https://www.ncbi.nlm...pubmed/26319097

 

https://www.ncbi.nlm...ooks/NBK507269/

 

https://www.ncbi.nlm...ubmed/20152124/

 

https://www.ncbi.nlm.../?term=25213836

 

https://clinicaltria...lzheimer&rank=2

 

https://www.alzdisco...tings/magnesium

-

-

Why vitamin B12? Treatment of apthous stomatitis.

 

https://www.ncbi.nlm...pubmed/26025792

 

https://www.ncbi.nlm...pubmed/29508904

 

https://www.ncbi.nlm...pubmed/28267610

 

https://www.ncbi.nlm...pubmed/27886078

-

-

Why vitamin D? General health.

https://academic.oup.../5/1004/4577000

 

https://www.ncbi.nlm...les/PMC3812066/

 

https://www.ncbi.nlm...pubmed/20625085

 

https://www.ncbi.nlm...les/PMC5700019/

 

https://www.ncbi.nlm...pubmed/26538263

 

https://www.health.h...ns-20101130862v

-

 

-

Why a combination of therapies?

 

Using a multi-pronged approach to neurological disorders:

 

https://www.ncbi.nlm...les/PMC4221920/

 

 

-

 

-

 

Why a diet rich in cruciferous vegetables?

 

https://scienceofpar...09/30/broccoli/

 

 

-

 

Why daily/intermittent fasting?

 

https://www.ncbi.nlm...pubmed/29510748

 

https://www.ncbi.nlm...pubmed/28537332

 

https://www.ncbi.nlm...pubmed/29107505

 

https://www.ncbi.nlm...pubmed/27810402

 

https://www.ncbi.nlm...pubmed/29302618

 

https://www.ncbi.nlm...pubmed/26485309

Joe in NY

-

-The role of oligomers and autophagy:

 

https://www.ncbi.nlm...les/PMC4462648/

 

https://www.ncbi.nlm...les/PMC6422678/

 

https://www.ncbi.nlm...les/PMC4020154/

 

https://www.ncbi.nlm...pubmed/29545515

 

https://www.ncbi.nlm...pubmed/29416016


Edited by 2Sunny, 06 December 2019 - 08:16 PM.

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#2 2Sunny

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Posted 22 February 2020 - 02:10 PM

I made some minor tweaks to the stack:

 

SUPPLEMENTS: (amounts are daily total)

 

                    

-AM&PM-

100 mg sulforaphane glucosinolate (1 pill AM, 1 pill PM)

180 mg bio-available curcumin (Theracurmin HP) (1 pill AM, 1 pill PM)

300 mg Pterostilbene (1 pill AM, 1 pill PM)

600 mg Niagen by Chromadex (1 pill AM 1 pill PM)

800 mg Ubiquinol (4 pills AM, 4 pills PM)

1333 mg NeuroMag (magnesium L-threonate) ( 1 pill AM,1 pill PM)

2000 mg taurine by Life Extension (1 pill AM, 1 pill PM)

 

 

-AM-

3 g thiamine HCl/vitamin B1 by Solgar (6 pills AM)

50 g trehalose AM in coffee (2 heaping Tbs)

100 mg PURE brand Green Tea extract (1 pill AM)

 

 

-PM-

5 mg lithium orotate (the PURE brand) (1 pill PM)

20 mg BioPQQ (1 pill PM)

 

not taken for ataxia, but treatment of apthous stomatitis and general health:

500 mcg B-12 (methylcobalamin) (1 pill AM) (contains mannitol)

1000 IU vitamin D (1 pill AM)

 

 

 

 

I think the changes include:

1) increasing Ubiquinol from 400 mg to 800 mg per day

2) increasing B1 from 2.5 g to 3 g

3) increasing trehalose from 40g to 50g

4) replacing Chinese Skull Cap with Green Tea Extract

5) increasing pterostilbene from 100 mg to 300 mg

6) reducing Niagen from 1200 mg to 600 mg

7) add sulforaphane to my stack

 

1) I did because I reviewed this study again https://www.ncbi.nlm...les/PMC4674072/ and this time I noted that there was one patient with my exact disorder that had a score of zero on their SARA test and that patient was taking 2000 mg of CoQ10 (note: Ubiquinol is the more expensive version that has 3 times the absorption rate hence my taking 800 mg Ubiquinol which should equal about 2400 mg CoQ10)

 

2) I have been steadily upping my B1 based on the recommendations of Dr. Constantini's research https://highdosethiamine.org  and the anecdotes of other users on Health Unlocked.  

 

3) 50 g was just a more accurate measurement of what I was actually eating.

 

4) I stopped Green Tea because of concerns on toxicity but upon further reading I felt the concerns were not enough to stop my taking a small amount.

 

5 and 6) I found a new study tying benefits in ataxia to Sirtuin activation  https://pubmed.ncbi....taxia Type 7 soI upped my pterostilbene and reduced my Niagen to focus more on Sirtuin activation and less on NAD+ production plus reviewing the clinical data on Niagen one sees that the benefit of going from 600 to 1200 is way less than 100 to 600 so I picked 600 mg per day as a happy medium not to mention that it works out to 1 pill AM and 1 pill PM and NAD+ level start to fall off after 10 hours

 

7) added sulforaphane based on the discussions on this site

 

Edited by 2Sunny, 22 February 2020 - 02:22 PM.


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#3 2Sunny

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Posted 08 March 2020 - 01:35 PM

I experienced a slight decrease in my pace on the treadmill after my recent change in supplements and so I went back to:

 

1200 mg daily of Niagen

2.5 g daily of thiamine

 

I also am starting 5 g daily of creatine monohydrate effective today.  I have 4 reasons for starting creatine monohydrate:

 

1) I recently have had a harder time recovering from exercise feeling a heaviness in my legs the day after exercise.

2) This gentleman (who has gone more than a decade past when his mother had symptoms) took creatine for years - https://curehd.blogs...arch?q=creatine - Although, he stopped taking the supplement I disagree for reasons I state next.

3) The CREST-E study that showed no efficacy in taking creatine for Huntington's passed over two simple data points that I choose not to ignore.  Namely 13 of the patients who took creatine for 4 years showed a large difference in primary outcome on the very last check.  Second, the researcher found a difference between men and women in response with men having a positive response.  My unproven suspicion is that these patients likely had lifestyles that included multiple aspects chosen to attack their illness showing that creatine alone is not efficacious but when combined with other therapies is part of a complete complimentary therapy that IS efficacious.

4)  The enormous amount of research in humans and animals that show benefit from creatine on overall muscle strength and health.

 

https://www.ncbi.nlm...pubmed/28701493

creatine.jpg


Edited by 2Sunny, 08 March 2020 - 01:38 PM.


#4 2Sunny

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Posted 08 March 2020 - 01:50 PM

I should note that I have been banned from the website linked in the first post.  In January of 2020, I was forced to make the decision to stop feeding my father, and he subsequently died within a month.  There was an individual on that website who would post threads stating that supplements were dangerous every time I posted information on a new supplement.  She also is a moderator on a US based ataxia forum where she banned me for discussing supplements because she felt I crossed the line of their policy on "describe and don't prescribe"  although I almost always state that people should talk to their doctor before trying anything new. On the night I made the decision for my father I drank heavily and sent her an email that was inappropriate, and although I tried to apologize the next day I was banned for attacking another member in a PM.  I'm not excusing myself for the inappropriate PM, but rather just want to be open and honest in case someone goes to the other website and sees the post on my being banned.


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#5 2Sunny

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Posted 13 July 2020 - 11:40 AM

Update with minor changes:

 

 

 

 

Daily - walk 30 minutes in the woods with the dogs

3 times a week - 20 minute jog and 40 minutes of weight training

Every other day - yoga/stretching

no longer intermittent fasting

at the moment went back to eating meat and fish because 2 of my children are home from college because of COVID so it's just easier

 

SUPPLEMENTS: (amounts are daily total)

 

                       -AM&PM-

40 mg     BioPQQ (1 pill AM/PM)

100 mg   PURE brand Green Tea extract (1 pill AM/PM

180 mg   bio-available curcumin (Theracurmin HP) (1 pill AM/PM)

300 mg   Pterostilbene (1 pill AM/PM)

475 mg   sulforaphane glucosinolate (Avmacol) (1 pill AM/PM)

600 mg   Niagen by Chromadex (1 pill AM/PM)

800 mg   Ubiquinol (2 pills AM/PM)

1333 mg NeuroMag (magnesium L-threonate) ( 1 pill AM/PM)

2000 mg taurine by Life Extension (1 pill AM/PM)

 

 

-AM-

500 mcg B-12 (methylcobalamin) (1 pill AM) (contains mannitol) - this is a "lozenge" that I now suck on once daily as intended rather than my previous habit of swallowing twice daily

2 g thiamine HCl/vitamin B1 by Solgar (4 pills AM)

40 g trehalose AM in coffee (2 heaping Tbs)

1000 IU vitamin D (1 pill AM)

 

 

sometime around lunch - 10 g Creatine with OJ

 

 

-PM-

5 mg lithium orotate (the PURE brand) (1 pill PM)

 

 

The changes:

1) Increased Creatine from 5 g to 10 g - the study cited above used 40 g, the recommended daily amount on the package is 5 g, I felt 10 g was a better compromise.

2) reduced Niagen from 1200 mg to 600 mg - back to the human study showing most of the increase in NAD+ occurs at lower doses.  Higher doses probably do not dramatically increase levels.

3) reduced Thiamine from 3 g to 2 g - same as above

4) increased PQQ to twice daily - read that the PQQ may enhance the uptake of Ubiquinol

5) went back to twice daily EGCG because its cheap and has SO much research showing potential benefit

 

I also want to relay some information on my exercise changes.  First, I had a terrible fall in May where I really strained my Glutes, and almost at the same time I developed Patellar Tendonitis.  Turns out (according to my sister who is a physical therapist) that the machine exercise I was doing where one sits at the weight machine and straightens ones legs with a weight at your ankles is one of the worst possible exercises an older individual can do and almost always results in injury to the knee.  I, of course, was doing it even worse because I was "throwing" the weight with my legs which is even worse than simply doing the exercise itself.  Anyways, long story long, the two injuries forced my to rest for several weeks performing only gentle stretching, and what I found was that all the stiffness I was experiencing almost daily went away.  When I returned to a lower level of exercise intensity the feeling stayed. So . . . based on my own personal experience I no longer run at 80% heart rate for 30 minutes but rather I walk for 30 minutes everyday and then jog comfortably as often as I can but only for 20 minutes and then do some basic core training such as sit ups, lat pulls, chest press, squats with light weights, etc.

 

Also, I want to emphasize that I feel quite strongly that the addition of 10 g of Creatine has been beneficial in eliminating the stiffness and making workout recovery better.  My wife, who is 61, also started taking Creatine at the same dose.  She runs every other day 4-6 miles and times herself with one of those iPhone health apps.  Since taking Creatine her time changed from about a 10 minute mile to a 9:30 mile.  Obviously this is all anecdotal and nothing more, but there it is . . .

 

Best Wishes to All,

 

Joe in NY

 

 

 

 

Edited by 2Sunny, 13 July 2020 - 12:13 PM.


#6 2Sunny

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Posted 07 September 2020 - 12:16 PM

Update:

 

After reducing my Niagen intake I found I was wanting to lay down for an hour or two in the afternoon and my morning balance was not so good as I started having trouble balancing on one leg when putting my pants on so . . . I went back to 1200 mg per day of Niagen and the fatigue and balance got better.  Was it because of Niagen or was it psychscosomatic?  Who knows.  Also, chalk it up to old timers disease, but I changed Creatine brands and didn't read the label and only recently realized that I was taking 5g per day not 10.  Since there has been no adverse change I've stuck with 5g per day of SixStar brand that I get at CVS.

 

SUPPLEMENTS: (amounts are daily total)

 

                       -AM&PM-

40 mg     PQQ (1 pill AM/PM)-------------------------------------------$0.66

140 mg   EGCG/ PURE brand Green Tea extract (1 pill AM/PM)----$0.64

180 mg   bio-available curcumin (Theracurmin HP) (1 pill AM/PM)--$1.50

300 mg   Pterostilbene (1 pill AM/PM)---------------------------------$0.28

475 mg   sulforaphane glucosinolate (Avmacol) (1 pill AM/PM)----- $1.00

800 mg   Ubiquinol (2 pills AM/PM)------------------------------------$2.15

1200 mg  Niagen by Chromadex (2 pill AM/PM)----------------------$2.92

1333 mg NeuroMag (magnesium L-threonate) ( 1 pill AM/PM)------$0.50

2000 mg taurine by Life Extension (1 pill AM/PM)--------------------$0.46

 

 

-AM-

500 mcg B-12 (methylcobalamin) (1 pill AM) (contains mannitol) ----$0.37- this is a "lozenge" that I now suck on once daily

40 g trehalose AM in coffee (2 heaping Tbs)---------------------------$0.75

1000 IU vitamin D (1 pill AM)--------------------------------------------$0.03

 

 

sometime around lunch - 5g Creatine with OJ------------------------$0.13

 

 

-PM-

5 mg lithium orotate (the PURE brand) (1 pill PM)---------------------$0.21


Total = $11.60 daily / $350 monthly / $4200 annually


Edited by 2Sunny, 07 September 2020 - 12:52 PM.


#7 2Sunny

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Posted 07 September 2020 - 01:19 PM

It has gone past the allowed edit time but I wanted to add one more change:

 

"Was it because of Niagen or was it psychscosomatic? Who knows, but I would note this is the second time I tried to reduce my daily Niagen intake and felt I noticed a difference."



#8 2Sunny

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Posted 13 March 2021 - 12:23 PM

I missed the 2g of Thiamine in the AM. Plus I have reduced my Niagen and Pterostilbene by half this time with no change so I'm keeping it that way.

 

Tomorrow is my 55th birthday and 5th year of symptoms remaining unchanged for a disease that is supposedly untreatable and that progresses rapidly.

 

SUPPLEMENTS: (amounts are daily total)

 

                       -AM&PM-

40 mg     PQQ (1 pill AM/PM)-------------------------------------------$0.66

140 mg   EGCG/ PURE brand Green Tea extract (1 pill AM/PM)----$0.64

180 mg   bio-available curcumin (Theracurmin HP) (1 pill AM/PM)--$1.50

475 mg   sulforaphane glucosinolate (Avmacol) (1 pill AM/PM)----- $1.00

600 mg  Niagen by Chromadex (2 pill AM/PM)-----------------------$1.46

800 mg   Ubiquinol (2 pills AM/PM)------------------------------------$2.15

1333 mg NeuroMag (magnesium L-threonate) ( 1 pill AM/PM)------$0.50

2000 mg taurine by Life Extension (1 pill AM/PM)--------------------$0.46

 

 

-AM-

40 g trehalose AM in coffee (2 heaping Tbs)---------------------------$0.75

 

150 mg   Pterostilbene (1 pill AM)---------------------------------------$0.14

500 mcg B-12 (methylcobalamin) (1 pill AM) (contains mannitol) ----$0.37- this is a "lozenge" that I now suck on once daily

1000 IU vitamin D (1 pill AM)---------------------------------------------$0.03

2000mg thiamine (4 pills AM) --------------------------------------------$0.50

 

sometime around lunch - 5g Creatine with OJ-------------------------$0.13

 

 

-PM-

5 mg lithium orotate (the PURE brand) (1 pill PM)---------------------$0.21


Total = $10.50 daily / $320 monthly / $3840 annually

 

 


Edited by 2Sunny, 13 March 2021 - 12:35 PM.


#9 2Sunny

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Posted 13 March 2021 - 01:40 PM

So I reposted this because after more research this morning I am adding vitamin C to my list of daily supplements.  The research on vitamin C as a general aid against neurodegeneration is quite extensive:

 

Does Vitamin C Influence Neurodegenerative Diseases and Psychiatric Disorders?

 

I missed the 2g of Thiamine in the AM. Plus I have reduced my Niagen and Pterostilbene by half this time with no change so I'm keeping it that way.

 

Tomorrow is my 55th birthday and 5th year of symptoms remaining unchanged for a disease that is supposedly untreatable and that progresses rapidly.

 

SUPPLEMENTS: (amounts are daily total)

 

                       -AM&PM-

40 mg     PQQ (1 pill AM/PM)-------------------------------------------$0.66

140 mg   EGCG/ PURE brand Green Tea extract (1 pill AM/PM)----$0.64

180 mg   bio-available curcumin (Theracurmin HP) (1 pill AM/PM)--$1.50

475 mg   sulforaphane glucosinolate (Avmacol) (1 pill AM/PM)----- $1.00

600 mg  Niagen by Chromadex (2 pill AM/PM)-----------------------$1.46

800 mg   Ubiquinol (2 pills AM/PM)------------------------------------$2.15

1333 mg NeuroMag (magnesium L-threonate) ( 1 pill AM/PM)------$0.50

2000 mg taurine by Life Extension (1 pill AM/PM)--------------------$0.46

2000 mg vitamin C (1 pill AM/PM) -------------------------------------$0.15

 

 

-AM-

40 g trehalose AM in coffee (2 heaping Tbs)---------------------------$0.75

 

150 mg   Pterostilbene (1 pill AM)---------------------------------------$0.14

500 mcg B-12 (methylcobalamin) (1 pill AM) (contains mannitol) ----$0.37- this is a "lozenge" that I now suck on once daily

1000 IU vitamin D (1 pill AM)---------------------------------------------$0.03

2000mg thiamine (4 pills AM) --------------------------------------------$0.50

 

sometime around lunch - 5g Creatine with OJ-------------------------$0.13

 

 

-PM-

5 mg lithium orotate (the PURE brand) (1 pill PM)---------------------$0.21


Total = $10.65 daily / $320 monthly / $3890 annually

 

 

 

 

#10 Nami Landavazo

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Posted 10 April 2021 - 11:28 AM

Hi Joe-
I finally found you since the incident on Ataxia UK site...

Anyways, I know you are familiar with the benefits of intranasal delivery to bypass the blood brain barrier and wanted to let you know about a NAD+ nasal spray I have been using. Any ingested supplements have to go thru first pass metabolism whereas the nasal spray does not and can be more bioavailable. I’d be interested in your thoughts.

Nami

#11 2Sunny

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Posted 10 April 2021 - 11:32 AM

Hi Nami!  So glad you found this site!  I have not heard of a nasal NAD+ spray, but would be most interested in learning more.  Does it have a name brand name?  Was it recommended by your neurologist?  Thanks so much for coming over here!!  Joe



#12 2Sunny

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Posted 10 April 2021 - 11:46 AM

To my friends from Ataxia UK.  I read up on Lion's Mane.  It appears to be similar if not identical to broccoli seed extract, Avmacol, in it's biological impact.  The difference is Avmacol has been studied several medical trials and found to have great general health benefits in humans as a matter of scientific fact.  My though would be to take Avmacol instead of Lion's Mane, but just my thoughts :)

 

Neurohealth Properties of Hericium Erinaceus Mycelia

 

 

#13 Nami Landavazo

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Posted 10 April 2021 - 12:15 PM

I actually had been looking at another therapy administered intranasally and was researching different methods of intranasal administration. That lead me to a compound pharmacy that compounds a NAD+ nasal spray. It’s by prescription only but I had been taking 600mg-900mg of Niagen for the past 3 years already so my dr called a RX in for me. Of course my neurologist didn’t suggest it, as they are very conservative in “treatments”. I found it on my own as with pretty much everything I take... What is ur email address? I’ll send you info.

#14 2Sunny

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Posted 10 April 2021 - 12:54 PM

Super . . . I'm at peckja@aol.com



#15 2Sunny

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Posted 08 July 2021 - 12:36 PM

Tiny change in the list and found a big mistake in the math.  I was under counting the Niagen by 50%.  It wasn't $1.46 per day; it was $2.92 per day, but now I'm switching to Basis which is made by a competitor of Chromadex, but includes Pterostilbene in the pill and is a tiny bit less expensive, but I haven't made up my mind as to whether or not I'll go to 750 mgs per day or down to 500 mg per day.  For the moment I think I'll go up to 750 which will be a slight increase in cost, but then what's $500 more per year if it really slows my disease for the coming decade.

 

SUPPLEMENTS: (amounts are daily total)

 

                       -AM&PM-

40 mg     PQQ (1 pill AM/PM)-------------------------------------------$0.66

140 mg   EGCG/ PURE brand Green Tea extract (1 pill AM/PM)----$0.64

180 mg   bio-available curcumin (Theracurmin HP) (1 pill AM/PM)--$1.50

475 mg   sulforaphane glucosinolate (Avmacol) (1 pill AM/PM)----- $1.00

750/150 mg  Niagen+Pterostilbene (3 pill AM/PM)-----------------------$4.00

800 mg   Ubiquinol (2 pills AM/PM)------------------------------------$2.15

1333 mg NeuroMag (magnesium L-threonate) ( 1 pill AM/PM)------$0.50

2000 mg taurine by Life Extension (1 pill AM/PM)--------------------$0.46

2000 mg vitamin C (1 pill AM/PM) -------------------------------------$0.15

 

 

-AM-

40 g trehalose AM in coffee (2 heaping Tbs)---------------------------$0.40

 

500 mcg B-12 (methylcobalamin) (1 pill AM) (contains mannitol) ----$0.37- this is a "lozenge" that I now suck on once daily

1000 IU vitamin D (1 pill AM)---------------------------------------------$0.03

2000mg thiamine (4 pills AM) --------------------------------------------$0.50

 

sometime around lunch - 5g Creatine with OJ-------------------------$0.13

 

 

-PM-

5 mg lithium orotate (the PURE brand) (1 pill PM)---------------------$0.21


Total = $12.70 daily / $381 monthly / $4572 annually

 

possibly if I go to 2 pills of Basis:

 

$11.37/$341/$4093.


Edited by 2Sunny, 08 July 2021 - 12:40 PM.


#16 2Sunny

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Posted 23 July 2021 - 12:02 PM

Small changes . . . so for those that like stories I'll post a longer bit below, but for those that want to skip the details just know that I no longer follow the 80% heart rate recommendation and instead simply a) walk my dogs in the woods for about 20 mins then b) jump on the treadmill for a 15 minute easy jog and a 15 minute fast walk on an incline plus I reduced my Basis (which is Niagen and Pterostilbene together) to 4 pills per day (2 AM and 2 PM) so now I'm taking 500 mg daily of Niagen and 100 mg Pterostilbene.  Also, I'm back to being vegan with an occasional cheat.

 

Here's why I changed my exercise routine  and went vegan.

 

I'm a pilot for United Airlines by profession and as such I get a required physical every 6 months.  At a certain age pilots are required to have an EKG as part of their physical at least once per year.  Last year I got a letter from the FAA telling me that my EKG showed a Premature Ventricular Contraction which can be benign, but can also be a sign of something more serious and as such I needed to have extensive testing done to show my PVC was not serious.  The testing included a Nuclear Stress Test, a full blood panel, an Echo cardiogram, and an evaluation by a cardiologist.  I had 2 months to prepare.  So, I upped my exercise routine, went full vegan, ate oatmeal everyday, and stopped drinking wine altogether.  2 months later I went in for testing and passed with flying colors.  When all was said and done I was tired of exercising everyday and decided to try a break and see what happened.  My break turned into 8 months of no exercise and generous helpings of Shake Shack burgers with fries. Finally I saw a picture of my fat face and realized it was time to get back on the treadmill and to start eating well again. As a result I returned to a life of veganism and restarted my daily exercise.  Having seen no difference in my balance after 8 months of no time on the treadmill, I decided that perhaps the 80% target was not really a major player for SCA patients.  The study on which I based my original belief in 80% was done on patients with Parkinson's not SCA, and studies done on SCA patients involving exercise actually showed benefits just by walking so . . . long story short I decided to try easing up a bit on my treadmill work.  It makes the workout much more pleasurable and easier to convince myself to get my butt downstairs to my home gym.  I also still include light weight training.

 

Anyways, there it is.  I took an 8 month break from exercise and maintained no change in symptoms, but now I am returning to a life of moderate daily exercise not because it is important for my SCA, but simply because it is important for health in general, and MAYBE it helps slow the progression of SCA as well.

 

Last comment:  I'm bringing my Niagen down to 500 mg daily to see if I notice anything longer term say 6 months from now.  I really believe the combination of all that I am doing is far more important than the total amounts of each supplement and the science in humans shows that even 500 mg daily of Niagen does a great deal to boost NAD+ production and that is all that really matters.


Edited by 2Sunny, 23 July 2021 - 12:05 PM.


#17 2Sunny

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Posted 11 August 2021 - 04:00 PM

Latest update.  I am a test subject of one and can never be certain that what I feel or don't feel is the result of something I'm doing or not, but it's all I have to go on, and so far what I've been doing has clearly been "doing" something.  Anyways, after just a couple weeks of 500 mg daily of Niagen I noticed a tiny change in my balance.  Mostly I felt it when on the treadmill and in the morning when I first got up and was going downstairs.  Given that the only change I've made in months was the reduction in Niagen I decided to re-up the amount so I actually went back to 1000 mg daily, and you guessed it . . . my balance on the treadmill began to feel normal.  Today felt 100% normal, and I walked downstairs in the AM without holding the rail, and put on my sweat pants right after waking up one leg at a time without holding on to anything (that is one of my personal indicators of balance I experience daily).  I am going to go back down to 750 mg daily now that my balance is back to normal, but I just thought it was interesting that going down to 500 mg daily seems to be a cutoff level as I was at 600 for months before that.

 

Summary: I'm back to 750 mg daily of Niagen which I take in the form of Basis which is a combination of Niagen and Pterostilbene.


Edited by 2Sunny, 11 August 2021 - 04:01 PM.


#18 Kentavr

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Posted 11 August 2021 - 06:23 PM

Good afternoon!
 
I advise you to take a look at https://alivebyscience.com/ and carefully read all the arguments that relate to NR and NMN. You will learn a lot. In particular, taking large amounts of NR can be risky.
 
Also pay attention to peptide drugs. Many of the peptides give very good results. 


#19 2Sunny

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Posted 13 August 2021 - 10:46 AM

 

Good afternoon!
 
I advise you to take a look at https://alivebyscience.com/ and carefully read all the arguments that relate to NR and NMN. You will learn a lot. In particular, taking large amounts of NR can be risky.
 
Also pay attention to peptide drugs. Many of the peptides give very good results. 

 

 

I'm old an old curmudgeon so forgive the me for being rude, but you linked to an ad not research.  I take large amounts of NR because I have a disease that has a 100% fatality.  The research I linked to above shows clearly that increasing NAD+ has benefits in repairing damage from protein mis-folding.  There are also Clinical Trials ongoing wherein patients are being given 1000 mg daily of NR.  When or if I ever find research showing more harm than good, I will reconsider my daily NR consumption, but until then . . . not so much.



#20 Kentavr

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Posted 13 August 2021 - 11:02 AM

I'm old an old curmudgeon so forgive the me for being rude, but you linked to an ad not research.  I take large amounts of NR because I have a disease that has a 100% fatality.  The research I linked to above shows clearly that increasing NAD+ has benefits in repairing damage from protein mis-folding.  There are also Clinical Trials ongoing wherein patients are being given 1000 mg daily of NR.  When or if I ever find research showing more harm than good, I will reconsider my daily NR consumption, but until then . . . not so much.

 

Please, here:

 

Instability in NAD+ metabolism leads to impaired cardiac mitochondrial function and communication

 

https://elifescience.../articles/59828

 

"In addition, we show that myocardial mtDNA damage in combination with high dosages of nicotinamideriboside (NR) causes an inhibition of sirtuin activity due to accumulation of nicotinamide (NAM), in addition to irregular cardiac mitochondrial morphology. Consequently, high doses of NR should be used with caution, especially when cardiomyopathic symptoms are caused by mitochondrial dysfunction and instability of mtDNA."

 

In short, NR decomposes to NAM, while NAM has the exact opposite effect. But you may not notice this effect from taking a lot of NAM because you are taking a lot of other supplements.



#21 Kentavr

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Posted 13 August 2021 - 12:26 PM

Additionally, read this thread

 

https://www.longecit...na-damage-mice/

 

 



#22 2Sunny

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Posted 07 October 2021 - 11:34 AM

Please, here:

 

Instability in NAD+ metabolism leads to impaired cardiac mitochondrial function and communication

 

https://elifescience.../articles/59828

 

"In addition, we show that myocardial mtDNA damage in combination with high dosages of nicotinamideriboside (NR) causes an inhibition of sirtuin activity due to accumulation of nicotinamide (NAM), in addition to irregular cardiac mitochondrial morphology. Consequently, high doses of NR should be used with caution, especially when cardiomyopathic symptoms are caused by mitochondrial dysfunction and instability of mtDNA."

 

In short, NR decomposes to NAM, while NAM has the exact opposite effect. But you may not notice this effect from taking a lot of NAM because you are taking a lot of other supplements.

 

I am keenly aware that NAM inhibits Sirtuin activity, but there is zero evidence that at the dosage I am taking NR creates excess NAM.  In fact, there is extensive research showing NR at the levels I take enhances Sirtuin activity.  The "high" dosage given to the mice in the study was the equivalent of more than 2 GRAMs daily for me.  I'm taking .6.  Also, the study is for heart problems not neurological disorders AND NAD+ levels in adults decreases with age naturally, but the amount of NR I take does not boost NAD+ levels even to the level my body produced naturally as a youth.  Sorry - you're making a case for an issue that doesn't exist.

 

Note: For anyone following along I would add that I went back and forth on 750 versus 600 and opted for 600 mg daily of Niagen mostly just because of cost.  I have been at that level for about a month now, but was at that level for most of 2021.  Only briefly did I increase to 750.
 


Edited by 2Sunny, 07 October 2021 - 12:00 PM.


#23 2Sunny

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Posted 08 October 2021 - 12:19 PM

I figure it's probably worth an update since I stopped taking Niagen as Basis which had Pterostilbene included and opted for separate pills, and should probably mention I am 100% vegan again.

 

SUPPLEMENTS: (amounts are daily total)

 

                       -AM&PM-

40 mg     PQQ (1 pill AM/PM) -------------------------------------------$0.66

140 mg   EGCG/ PURE brand Green Tea extract (1 pill AM/PM) ----$0.64

150 mg   Pterostilbene (1 pill AM/PM) ---------------------------------$0.30

180 mg   bio-available curcumin (Theracurmin HP) (1 pill AM/PM)--$1.50

475 mg   sulforaphane glucosinolate (Avmacol) (1 pill AM/PM)----- $1.00

600/mg  TruNiagen (2 pills AM/PM)  -----------------------------------$2.90

800 mg   Ubiquinol (2 pills AM/PM) ------------------------------------$2.15

1333 mg NeuroMag (magnesium L-threonate) ( 1 pill AM/PM) ------$0.50

2000 mg taurine by Life Extension (1 pill AM/PM) --------------------$0.46

2000 mg vitamin C (1 pill AM/PM)  -------------------------------------$0.15

 

 

-AM-

40 g trehalose AM in coffee (2 heaping Tbs)---------------------------$0.40

 

500 mcg B-12 (methylcobalamin) (1 pill AM) (contains mannitol) ----$0.37- this is a "lozenge" that I now suck on once daily

1000 IU vitamin D (1 pill AM)---------------------------------------------$0.03

2000mg thiamine (4 pills AM) --------------------------------------------$0.50

 

sometime around lunch - 5g Creatine with OJ-------------------------$0.13

 

 

-PM-

5 mg lithium orotate (the PURE brand) (1 pill PM)---------------------$0.21


Total = $11.90 daily / $357 monthly / $4343 annually

 


Edited by 2Sunny, 08 October 2021 - 12:21 PM.


#24 Neurocryo

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Posted 09 October 2021 - 01:55 AM

I figure it's probably worth an update since I stopped taking Niagen as Basis which had Pterostilbene included and opted for separate pills, and should probably mention I am 100% vegan again.

 

SUPPLEMENTS: (amounts are daily total)

 

                       -AM&PM-

40 mg     PQQ (1 pill AM/PM) -------------------------------------------$0.66

140 mg   EGCG/ PURE brand Green Tea extract (1 pill AM/PM) ----$0.64

150 mg   Pterostilbene (1 pill AM/PM) ---------------------------------$0.30

180 mg   bio-available curcumin (Theracurmin HP) (1 pill AM/PM)--$1.50

475 mg   sulforaphane glucosinolate (Avmacol) (1 pill AM/PM)----- $1.00

600/mg  TruNiagen (2 pills AM/PM)  -----------------------------------$2.90

800 mg   Ubiquinol (2 pills AM/PM) ------------------------------------$2.15

1333 mg NeuroMag (magnesium L-threonate) ( 1 pill AM/PM) ------$0.50

2000 mg taurine by Life Extension (1 pill AM/PM) --------------------$0.46

2000 mg vitamin C (1 pill AM/PM)  -------------------------------------$0.15

 

 

-AM-

40 g trehalose AM in coffee (2 heaping Tbs)---------------------------$0.40

 

500 mcg B-12 (methylcobalamin) (1 pill AM) (contains mannitol) ----$0.37- this is a "lozenge" that I now suck on once daily

1000 IU vitamin D (1 pill AM)---------------------------------------------$0.03

2000mg thiamine (4 pills AM) --------------------------------------------$0.50

 

sometime around lunch - 5g Creatine with OJ-------------------------$0.13

 

 

-PM-

5 mg lithium orotate (the PURE brand) (1 pill PM)---------------------$0.21


Total = $11.90 daily / $357 monthly / $4343 annually

If I may add, in my youth I took a lot of head hits and cater my supplement protocols and lifestyle to TBI after effects. 
 

I have independtly arrived at a similar group of supplements to you.

 

A few things I may add, I drink my green tea in the early afternoon instead of supplementing.  I’ve found a variety with low caffeine called kukicha which is very calming.

 

Theres a paper out there where ptero increases bad cholesterol which is minimized when taken with grape seed extract.

 

For me, just eating raw broccoli does the trick.  I like to work all day and then eat broccoli, raw, on the drive home,  it’s like a drug.

 

I take turmeric in the early evening, the LE brand packaged with fenugreek is bioavailable but recently I’ve been taking the micronized quality of life brand.  Not sure which is better but I’ll pay a premium for both.

 

Mag threonate works well for me but for you no idea.

 

Ubiquinol doesn’t work for me because I get lazy eye whenever I take it, weird I know, I’ve had surgery for strabismus already and specifically ubiquinol supplementing makes my eye lazy again, FWIW.

 

Good luck looks well researched to me.



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#25 2Sunny

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Posted 12 October 2021 - 02:13 AM

If I may add, in my youth I took a lot of head hits and cater my supplement protocols and lifestyle to TBI after effects. 
 

I have independtly arrived at a similar group of supplements to you.

 

A few things I may add, I drink my green tea in the early afternoon instead of supplementing.  I’ve found a variety with low caffeine called kukicha which is very calming.

 

Theres a paper out there where ptero increases bad cholesterol which is minimized when taken with grape seed extract.

 

For me, just eating raw broccoli does the trick.  I like to work all day and then eat broccoli, raw, on the drive home,  it’s like a drug.

 

I take turmeric in the early evening, the LE brand packaged with fenugreek is bioavailable but recently I’ve been taking the micronized quality of life brand.  Not sure which is better but I’ll pay a premium for both.

 

Mag threonate works well for me but for you no idea.

 

Ubiquinol doesn’t work for me because I get lazy eye whenever I take it, weird I know, I’ve had surgery for strabismus already and specifically ubiquinol supplementing makes my eye lazy again, FWIW.

 

Good luck looks well researched to me.

 

Thank you so much for the post.  I truly enjoy reading about others struggling to find answers, and I am super excited to learn that your research led you to similar conclusions.  As for Turmeric, you should research Theracurmin HP.  The primary research was funded by the makers of the product, but if you read the studies on nano particles leading up to the development, and then the study done by the manufacturer I think it's fairly convincing.







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