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My Alternative Therapy for SCA1 and other polyglutamine disorders.

ataxia huntingtons disease

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#31 Neurocryo

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Posted 23 January 2022 - 08:18 PM

I have been taking 1.5 g of Niagen daily now for 4 days, and I can report a very dramatic improvement in my balance, fatigue, and after workout recovery feeling. Standby for an update in 6 months to see if I still feel better, and if there are any contra indications in my blood work or heart.

Glad to hear it!  I met and talked to Brenner on a few occasions as an undergrad when he was at my institution.  Very cool guy, haven’t tried NMN yet because I trust his research.



#32 2Sunny

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Posted 06 March 2022 - 06:29 PM

Glad to hear it!  I met and talked to Brenner on a few occasions as an undergrad when he was at my institution.  Very cool guy, haven’t tried NMN yet because I trust his research.

 

 

Dartmouth?  I'm an '88 myself.



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#33 Neurocryo

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Posted 20 March 2022 - 12:16 AM

Dartmouth?  I'm an '88 myself.

University of Iowa.  



#34 2Sunny

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Posted 16 April 2022 - 02:22 PM

For anyone following along please be aware that many cheaper versions of NMN are not really NMN.  The product I purchased was tested independently and found to contain Niacin not NMN.  I am back to buying the expensive Niagen which has quality I trust and is verified.



#35 2Sunny

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Posted 16 April 2022 - 02:29 PM

I want to keep it fairly simple for anyone interested in what I am doing to see my latest routine and so with that in mind I will post the following summary:

 

Diet: vegan but not intermittent fasting

 

 

Exercise: Daily walk in the woods with the dogs 30 minutes. 3 times weekly 15 minutes treadmill run at 4.5 mph and 15 minutes walking at 7% incline at 3.5 mph plus squats with a 20 lb kettle ball plus basic weights for upper body.

 

 

Stretching/yoga: 3 times weekly

 

 

Sleep: 8-10 hours per night in bed by 9-10 up at 5-7.

 

 

 

 

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

1500/mg TruNiagen (3 x 300 mg in AM 2 in PM)  -------------------- $5.56

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

6000 mg creatine (pills of 750 mg each - 4 AM/PM) ------------------$0.56

 

-AM-

70 g trehalose AM in coffee (3 heaping Tbs)---------------------------$0.60

 

500 mcg B-12 (methylcobalamin) (1 pill AM) (contains mannitol) ----$0.37- I found a study that showed chewing increased absorption so now I chew the tablet

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

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

 

Wow, I just realized the price for NM went up almost 20%. I am so sorry for those that are on a tight budget.  That is awful.  I think I will contact the makers and see if they can't offer some discount to people with Neurological disorders.


Edited by 2Sunny, 16 April 2022 - 03:06 PM.


#36 aribadabar

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Posted 17 April 2022 - 01:12 PM

For anyone following along please be aware that many cheaper versions of NMN are not really NMN.  The product I purchased was tested independently and found to contain Niacin not NMN.  I am back to buying the expensive Niagen which has quality I trust and is verified.

 

Which vendor(s) is that?

 

Definitely not Prohealth (the link I provided) as I am using it and can tell the difference in taste alone - NMN is distinctively sour (not bitter). Plus, one can't hide the Niacin flush at 100mg+ if unaccustomed and given that NMN dose is 500mg+ , there is no way Niacin can pass as NMN even without lab analysis.


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#37 2Sunny

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Posted 24 April 2022 - 02:31 PM

Which vendor(s) is that?

 

Definitely not Prohealth (the link I provided) as I am using it and can tell the difference in taste alone - NMN is distinctively sour (not bitter). Plus, one can't hide the Niacin flush at 100mg+ if unaccustomed and given that NMN dose is 500mg+ , there is no way Niacin can pass as NMN even without lab analysis.

 

 

 Sadly I tried to go even cheaper.  In the end I decided to stick with Niagen mostly because I only found NMN cheaper in powder form, and I prefer pill form.  In pill form the prices I found were actually higher for NMN versus Niagen.  Am I mistaken?  Is there a cheaper pill form of NMN?

 

 

 

 

 

Also, my last update left out lithium. I still take lithium so the correct list is as follows:

 

I eat a plant only diet, exercise regularly, stretch and do yoga exercises, and take the following list of supplements.  

 
My list of daily supplements:
  -AM&PM-
40 mg     PQQ (1 x 20 mg AM/PM)
140 mg   PURE Green Tea extract (1 x 70 mg AM/PM)
150 mg   Pterostilbene (1 x 75 mg AM/PM) 
180 mg   Theracurmin HP (1 x 90 mg AM/PM)
475 mg   Avmacol (1 pill AM/PM)
1500/mg TruNiagen (5 x 150 mg AM/PM)
800 mg   Ubiquinol (2 x 200 mg AM/PM)
1333 mg NeuroMag ( 1 pill AM/PM) 
2000 mg taurine (1 x 1000 mg AM/PM)
2000 mg vitamin C (1 x 1000 mg AM/PM)  
6000 mg creatine (4 x 750 mg  AM/PM) 
 
-AM-
70 g trehalose AM in coffee (3 heaping Tbs)
 
500 mcg B-12 (methylcobalamin) (1 pill AM)  I found a study that showed chewing increased absorption
1000 IU vitamin D (1 pill AM)
2000mg thiamine (4 pills AM) 
 
-PM-
5 mg lithium orotate 
 
 
 

Edited by 2Sunny, 24 April 2022 - 02:33 PM.


#38 aribadabar

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Posted 24 April 2022 - 02:46 PM

 

 Sadly I tried to go even cheaper.  In the end I decided to stick with Niagen mostly because I only found NMN cheaper in powder form, and I prefer pill form.  In pill form the prices I found were actually higher for NMN versus Niagen.  Am I mistaken?  Is there a cheaper pill form of NMN?

 

They do offer capsulated NMN too: https://www.prohealt...ns/nmn-capsules

 

Pricing varies depending on the pack size, but even at the most expensive version of а single bottle of 60x300mg you can do much better than $5.56 per 1500mg.


Edited by aribadabar, 24 April 2022 - 02:51 PM.


#39 2Sunny

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Posted 16 May 2022 - 12:41 PM

A short tragic aside that I believe is relevant.  If anyone from Health Unlocked reads this, please, please, please understand I in no way mean to be disrespectful, I just wish to share what I feel is an important difference of opinion.

 

When I first joined Health Unlocked back in 2016 there was a member, who was very kind to me and supportive when i was banned the first time for recommending trehalose.  She had a genetic diagnosis virtually identical to mine.  She did try some of the supplements I suggested, but ultimately found it too difficult to continue taking even one.  Also, quite sadly she was starting from a lower level of fitness and by her mid-50s she was using a walker and a wheelchair.  Tragically she passed away this month at age 60 from complications associated with her SCA1.  I am deeply saddened by her death, but I also believe it shows how different a person's life experience can be based on how hard one fights their condition.  I am 56 and only 3 and a half years younger, but I maintain a full life including keeping my job as a B777 Captain traveling the world.  She believed people with SCA1 had different rates of progression because of genetics.  I believe genetics play a role, but I also believe how hard one tries to fight the disease is even more important.  


Edited by 2Sunny, 16 May 2022 - 01:07 PM.


#40 2Sunny

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Posted 21 June 2022 - 04:47 PM

Update:  I realized today when a doctor sent me a text asking where I had come up with my dosage for Niagen I had not clearly linked the relevant info.  So, here it is . . .

 

https://movementdiso....1002/mds.28788

 

 

 

Patients and Methods

In this single-center, interventional, open-label, proof-of-concept study, 24 patients with A-T were treated with NR (25 mg/kg bodyweight per day) during four consecutive months and subsequently followed during a 2-month period without treatment.

 



#41 ambivalent

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Posted 22 June 2022 - 01:28 PM

Hi again 2Sunny, 

 

Thanks for all your diligence - I trust you are good and well. A few thoughts:

 

Study with transgenic mouse with vitamin D - I didn't see this listed in your links. 

 

https://www.thetimes...tions-hs7nw2slx

 

I wonder if you have read Breath by James Nestor - I passed the book on before reading the second half, but thought given how fundamental breath was to maintaining good health (perhaps an order of magnitude more than imagined) could it be worth incoorporating, say, mouth-taping at night (I note you include yoga in your recommendations/protocol)

 

Fecal microbial Transplantation FMT) for Parkinsons - might there be a role for Huntingtons, SCA1?

 

https://journals.lww...py_for.103.aspx

 

Personalised nutrition based on gut bacteria study to optimise blood sugars:

 

https://joinzoe.com/home?beta=true

 

There is a chapter in Rebel Ideas by Matthew Syed on the subject, with I believe a US company taking samples and providing diet data.

 

Not sure how well known this is but according to Sinclair the reason why he takes NMN over NR is because the molecule already has the phosphates the NAD molecule needs, whereas NR doesn't so NAD needs to retrieve the phosophates from somewhere else. So if stcking with NR, perhaps supplement phosphates?

 

https://youtu.be/n9I...mBusuw?t=3658  

 

Finally, learn, keep practising a second language? 

 

https://www.mdsabstr...ngtons-disease/

 

Best

 

 

 


Edited by ambivalent, 22 June 2022 - 01:29 PM.


#42 2Sunny

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Posted 22 June 2022 - 01:47 PM

Thanks for the links!  I am particularly intrigued by the vitamin D info that led me to further research.  Glad I was already taking some.  It seems to be another very important vitamin in general.



#43 ambivalent

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Posted 22 June 2022 - 03:21 PM

It might be worth looking at Jeff Bowles' books - this is the one I caught the HD / vitamin D study from, the ambitiously named Cure for and prevention of all diseases.

 

https://jefftbowles.com/books/


Edited by ambivalent, 22 June 2022 - 04:12 PM.


#44 ambivalent

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Posted 22 June 2022 - 05:28 PM

I wondered too if you'd considered Turnbuckles Mitochondrial protocol (the latest will be in his profile)

 

https://www.longecit...drial-dynamics/

 

 



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#45 ambivalent

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Posted 26 June 2022 - 06:06 PM

There are probably worse ways a soil a post than to link to a member of the current British Cabinet but they are few in number currently (just to clarify) 

 

So here is the mouse vitamin D / HD link:

 

https://pubmed.ncbi....h.gov/27685770/

 

(if a moderator can replace link in the other post and delete this that would be great)


Edited by ambivalent, 26 June 2022 - 06:45 PM.






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