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.
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.
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.
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.
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.
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.
Edited by 2Sunny, 24 April 2022 - 02:33 PM.
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.
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.
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.
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.
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.
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/
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.
Posted 10 July 2022 - 01:37 PM
A brief update. I think this is important to note, but in January and February of '22 I spent 6 weeks in Denver training to be a Boeing 777 Captain for United Airlines. During that time I ate restaurant food and never once exercised. I also stopped taking creatine because when I took creatine in powder form mixed with OJ it often caused diarrhea and that would not have been ok when I was in a simulator session. When I returned home after the training I found my ataxia symptoms were much worse. My treadmill times had fallen to a 4.3 mph pace, and more importantly it really hurt to run. The feeling of ataxia in my legs while running on the treadmill had become so severe that I felt as if any minute I would have to slow to a walk and that I simply would need to give up running. At work I found myself feeling horribly unsteady while walking on airport moving walkways and when walking in downtown settings on concrete sidewalks.
Since, returning home from training I have been eating a mostly vegan diet, exercising one day then taking 2 days off, and I switched to taking creatine in pill form so my daily intake became precise at 3 g twice daily, and as I have noted above I am taking 25 mg per kg of body weight Niagen (1.5 g daily). I can happily report that I have actually experienced a minor improvement in my ataxia symptoms. My treadmill speed has increased from 4.3 mph to 5 mph. I no longer feel unsteady on sidewalks or moving walkways, but most noticeably that feeling on the treadmill of pain and potentially needing to walk and not run is totally gone.
When I discuss my regimen with doctors or others with SCA1 most everyone immediately attributes my success at controlling SCA to family genetics. They point out that everyone is different. Well, maybe, but maybe not. Personally, I like to think that what I am doing is actually making a difference. I can say for certain that my father and 2 aunts that also had SCA suffered much faster progression and were using a walker soon after onset of symptoms, so I'm pretty sure my success at keeping my symptoms at bay are not just because of family genetics.
P.S. As a result of the research I read above and other research I have increased my daily vitamin D intake to 2000 IUs.
P.P.S Also I upped my intake of B12 by 400% mostly to try and combat canker sores, but I am beginning to wonder if B12 doesn't play a bigger role in numerous ailments.
So here is my latest "stack":
My list of daily supplements:
Edited by 2Sunny, 10 July 2022 - 01:58 PM.
Posted 11 July 2022 - 03:04 PM
Here is a consolidated list of the most important research for what I will call my "Big 3": trehalose, Niagen, and creatine. If people with SCA1 try nothing else I hope they will try taking these 3. Most importantly and this is critical to understand, IF these do anything all they can do is SLOW progression. This means after taking these supplements for a month one should NOT expect to feel different, but that does NOT mean one should give up. I would hope that if one commits to trying this combo that person would stick with it for a couple years at a minimum. Personally I will take my list of supplements until I die whether or not they have ultimate proof of efficacy because there is no other alternative AND it MIGHT be helping.
Anyways here are links to what I think is the most important research:
Trehalose in Mice with Huntington's and SCA
Human Clinical Trial of Trehalose for SCA 3
Trehalose Fast Tracked for SCA
Niagen in Mice w/ Ataxia Telangiectasia
Niagen in Humans w/ Ataxia Telangiectasia
Niagen for Parkinsons in Humans
Creatine in Health and Disease
Posted 27 July 2022 - 01:01 PM
Have your vitamin D levels been tested? If not it might be worthwhile doing, it seems quite a conservative dose - maintenance rather than therapeutic, possibly?
I also wonder whether the increased ataxia effects but in part the supplement-withdrawal, before the body compensates homeostatically - to the cutting off of the supply line?
Posted 27 September 2022 - 04:26 PM
Hi Sunny,
I noticed looking at your protocol fisetin was not included. I wonder if you were aware of the following (2011) HD mouse study:
https://www.ncbi.nlm...les/PMC3005900/
"Given the positive results with fisetin in both the cell- and Drosophila-based assays, we decided to test the effect of fisetin in a mammalian model of HD, the R6/2 mouse. This transgenic mouse line expresses human mutant exon 1 of huntingtin with a highly expanded repeat from the mouse Htt promoter, and has been widely used as a model for testing novel therapeutic approaches to the treatment of HD [e.g. (25–27)]. Since the overall goal was to determine if oral administration of fisetin could be useful for the treatment of HD, fisetin was fed to genotyped R6/2 mice and their wild-type littermates in the food at 0.05% beginning at ∼6 weeks of age. The mice were tested on the rotorod from ∼7 to 13 weeks of age and survival was followed. At the time of acquisition of the animals, rotorod performance was already impaired in the R6/2 mice when compared with their wild-type littermates (Fig. 7A). However, the performance declined significantly more rapidly in animals on the control diet when compared with those on the fisetin diet (Fig. 7A). Similarly, as shown in Figure 7B, while the median lifespan of the R6/2 mice on the control diet was 104 days, that of fisetin-fed mice was increased by ∼30% to 134 days."
This I found from a more extensive paper on the potential benefits of fisetin in treating and precenting neurlogical disorders
The paper quotes a 139 rather than the 134 day figure for fisetin. Also worth noting that in an in vitro study using fisetin dissolved in DMSO, telomeres shortened, though were relatively preservative under stress. DMSO, though would seem to be no innocent onlooker of a solvent, without having been shown to demonstrate apoptopic tendecies at much weaker concentrations. Although through informal correspondence, there was suggestion that this was not witnessed in the adult brain. Even so, DMSO, appears quite a confounder.
Telomeres shortening is an effect of HD, though it isn't clear whether lengthening telomeres would be of benefit, I wonder if telemorase activators have been tried on HD, and related diseases.
Aside from that in vitro Fisetin/DMSO paper, study after study appears to demonstrate Fisetin's remarkable effects which may have much to do with inducing Sirt1.
Edited by ambivalent, 27 September 2022 - 05:21 PM.
Posted 08 December 2022 - 08:40 PM
Just a brief update. Based on the research linked above I decided to increase my daily Pterostilbene intake to 300 mg daily, and based on the recommendation of my Primary Care Physician I have increased my daily vitamin d to 500 mcg.
Latest supplements list update:
Edited by 2Sunny, 08 December 2022 - 08:50 PM.
Posted 08 December 2022 - 10:06 PM
Thanks for the update Sunny - I hope you find this paper very interesting, also posted in the c60 forum - quite remarkable results in rats using c60 dissolved in DMSO on an HD model:
https://www.ncbi.nlm...les/PMC8196695/
Incidentally, I used to have a lot of mouth ulcers which I have retrospectively put down to candida (which I likely treated with fisetin) - searching around I note literature connecting B12 deficiency with candida.
Posted 10 January 2023 - 05:12 AM
Here is a consolidated list of the most important research for what I will call my "Big 3": trehalose, Niagen, and creatine. If people with SCA1 try nothing else I hope they will try taking these 3. Most importantly and this is critical to understand, IF these do anything all they can do is SLOW progression. This means after taking these supplements for a month one should NOT expect to feel different, but that does NOT mean one should give up. I would hope that if one commits to trying this combo that person would stick with it for a couple years at a minimum. Personally I will take my list of supplements until I die whether or not they have ultimate proof of efficacy because there is no other alternative AND it MIGHT be helping.
Anyways here are links to what I think is the most important research:
Trehalose in Mice with Huntington's and SCA
Human Clinical Trial of Trehalose for SCA 3
Trehalose Fast Tracked for SCA
Niagen in Mice w/ Ataxia Telangiectasia
Niagen in Humans w/ Ataxia Telangiectasia
Niagen for Parkinsons in Humans
Creatine in Mice w/ SCA1
More Lucky Mice w/ SCA3
Creatine in Health and Disease
Posted 10 January 2023 - 11:44 AM
Hi 2Sunny hope you’re doing good and getting better, I would like to ask if you know that all your amazing treatment help for SCA3???
Hope You can answer me to make a decision thanks! And god bless you!
My father in law have sca3 +15 years now barely walk but my wife is on risk too so that I would like to recommend for hem and for prevent my wife.
We have been in Mayo Clinic to help in a research and dr told us about riluzol but is extremely expensive in Mexico.
And you’re the miracle I was looking for, hope we can talk some day!
Edited by Daniel Cooper, 13 January 2023 - 03:44 PM.
Posted 11 January 2023 - 03:41 PM
Hi 2Sunny hope you’re doing good and getting better, I would like to ask if you know that all your amazing treatment help for SCA3???
Hope You can answer me to make a decision thanks! And god bless you!
My father in law have sca3 +15 years now barely walk but my wife is on risk too so that I would like to recommend for hem and for prevent my wife.
We have been in Mayo Clinic to help in a research and dr told us about riluzol but is extremely expensive in Mexico.
And you’re the miracle I was looking for, hope we can talk some day!
Edited by Daniel Cooper, 13 January 2023 - 03:45 PM.
Posted 11 January 2023 - 09:08 PM
Thank you very much for your answer 2Sunny, I feel very glad to find your history, hoped I could found you before to help my father in law but always is a good time.
Today my wife went to the hospital to take a MR because she just start 3 weeks ago whit a double vision, everything else is normal so far, and we hope my wife had another different thing easy to cure, but im glad to see your post because now we have a hope to stop the progression to my father in law and to start to give this supplements to my wife just to stop before any other symptom appear (if she is positive).
I will talk to my wife and their family and let you know more news in the days so.
One more question, trehalose, creatine, niacin and pterostilbene need a prescription???
and All the supplements you take where do you buy it? in any pharmacy??? thanks again, and see you on the air!
Posted 13 January 2023 - 04:31 PM
At a minimum, I would recommend taking 100g daily of trehalose, and 6g daily of creatine since these are cheap, and if there is any way you can afford it I would recommend Niagen and Pterostilbene.
Joe in NY
Are you using trehalose to increase autophagy?
The problem with trehalose is that humans have an enzyme in the gut called trehalase which breaks down trehalose into two molecules of glucose before it hits the bloodstream. Mouse studies on the effects of trehalose aren't very applicable to humans since as far as I know mice don't make trehalase in their gut or at least produce it in minimal quantities.
IV infusions of trehalose will of course get it to the bloodstream. It might be possible to do some sort of liposomal encapsulation of trehalose that might get past the gut. Also it might be put in a suppository and absorbed that way.
If you're going to do it orally, I'd probably consume as much as possible at a time since you might overwhelm the available trehalase and get some to the bloodstream without being broken down that way. If we had something that would inhibit trehalase production temporarily that would be a route as well.
Posted 13 January 2023 - 09:11 PM
Are you using trehalose to increase autophagy?
The problem with trehalose is that humans have an enzyme in the gut called trehalase which breaks down trehalose into two molecules of glucose before it hits the bloodstream. Mouse studies on the effects of trehalose aren't very applicable to humans since as far as I know mice don't make trehalase in their gut or at least produce it in minimal quantities.
IV infusions of trehalose will of course get it to the bloodstream. It might be possible to do some sort of liposomal encapsulation of trehalose that might get past the gut. Also it might be put in a suppository and absorbed that way.
If you're going to do it orally, I'd probably consume as much as possible at a time since you might overwhelm the available trehalase and get some to the bloodstream without being broken down that way. If we had something that would inhibit trehalase production temporarily that would be a route as well.
Thank you for your concern, but I am keenly aware of the limits associated with taking trehalose orally versus intravenously. The intravenous route has gone through numerous trials and shown great efficacy unfortunately the first company trying to bring the therapy forward went bankrupt. Hopefully the current attempt will be more successful. Unfortunately the company is looking at a price tag in the $100s of thousands to cover the cost of development.
To your point, however, somewhere above I linked to 3 trials that are relevant to the issue of why I decided to take trehalose orally at the dose I did. First is a study showing some patients experience as much as 2% of trehalose passing directly into the blood stream. Second, was a study of patients who took trehalose orally and showed dramatic effects on heart health tests (I forget the exact data now), but bottom line what that showed was that some trehalose was, in fact, entering the blood stream and impacting the body in positive ways. The patients in that study were eating 100g per day. Unfortunately patients who were unable to moderate other aspects of their diet ended up gaining weight. The final study was done in Malaysia and with SCA3 patients taking trehalose orally. Only patients with early or mild symptoms saw benefit, but the recommendation of the researchers was that further study was warranted.
Bottom line: SCA1 is progressive and fatal and has no known treatment. I have shown zero progression for almost 7 years now. Something I am doing is making a difference, and until I find evidence that what I am doing is harmful (which 70 g of trehalose daily is definitely NOT) I fully intend to continue.
Now I see you are a moderator and I have been banned from other sites for making recommendations. If that is the ultimate concern then I hope you will let me rectify my comments but allow me to continue to share my ideas.
Again, thank you for your interest in my situation.
Joe in NY
Posted 13 January 2023 - 10:31 PM
Thank you for your concern, but I am keenly aware of the limits associated with taking trehalose orally versus intravenously. The intravenous route has gone through numerous trials and shown great efficacy unfortunately the first company trying to bring the therapy forward went bankrupt. Hopefully the current attempt will be more successful. Unfortunately the company is looking at a price tag in the $100s of thousands to cover the cost of development.
To your point, however, somewhere above I linked to 3 trials that are relevant to the issue of why I decided to take trehalose orally at the dose I did. First is a study showing some patients experience as much as 2% of trehalose passing directly into the blood stream. Second, was a study of patients who took trehalose orally and showed dramatic effects on heart health tests (I forget the exact data now), but bottom line what that showed was that some trehalose was, in fact, entering the blood stream and impacting the body in positive ways. The patients in that study were eating 100g per day. Unfortunately patients who were unable to moderate other aspects of their diet ended up gaining weight. The final study was done in Malaysia and with SCA3 patients taking trehalose orally. Only patients with early or mild symptoms saw benefit, but the recommendation of the researchers was that further study was warranted.
Bottom line: SCA1 is progressive and fatal and has no known treatment. I have shown zero progression for almost 7 years now. Something I am doing is making a difference, and until I find evidence that what I am doing is harmful (which 70 g of trehalose daily is definitely NOT) I fully intend to continue.
Now I see you are a moderator and I have been banned from other sites for making recommendations. If that is the ultimate concern then I hope you will let me rectify my comments but allow me to continue to share my ideas.
Again, thank you for your interest in my situation.
Joe in NY
First, I'm certainly not going to ban anyone here for making recommendations. We're just here to exchange ideas about improving health and longevity and value an open and vigorous discussion. So you have no worries there.
Certainly what you are doing appears to be working. The proof of the pudding is as they say in the eating. So you are to be congratulated on what you've accomplished.
The only fine point I'd make is that given that you're throwing everything including the kitchen sink at the problem (which is exactly what I'd be doing in your situation) there is always the question of what is working and what isn't. It would be impossible to tease everything apart given the myriad of treatments you are running simultaneously (again - exactly what I'd be doing in your shoes). In a situation like this it's likely that you're getting most of your benefit out of a few of your therapies, a lesser benefit from others, and maybe a few aren't doing anything at all (perhaps they work through the same MOA as something else you're doing that has a stronger effect). However if I had stalled a progressively fatal disease for 7 years I wouldn't change a thing. But obviously for the people that don't have the financial means to duplicate exactly what you're doing it would be nice if we knew what compounds were giving you the most benefit.
The only reason I bring up the issue of trehalase is that there may be some strategies to minimize it being catalyzed into glucose that others might have an interest in. I actually talked to one of the authors from that University of Colorado paper the human trial of oral trehalose several years ago. They didn't continue that research path because they were hoping for a larger response than what they saw (but there definitely was a positive effect). They acknowledged that it was probably because the trehalose was getting broken down in the gut before it was getting absorbed. I brought up potentially doing a liposomal encapsulation and they said it was something that they discussed amongst themselves and thought it would help. Also talked about the rectal route which they also believed would improve absorption but most patients were somewhat less than enthused about that route. I actually tried to entice a supplement maker that does a lot of liposomal encapsulations to offer a trehalose product but at the end of the day they didn't think they'd sell enough.
The use of trehalose as a therapeutic is fascinating and has been on my radar probably almost as long as it has yours. Seeing it discussed in a thread usually attracts my attention.
Thanks for sharing your knowledge and your experience with us.
Edited by Daniel Cooper, 13 January 2023 - 10:34 PM.
Posted 14 January 2023 - 01:56 PM
Daniel,
Thank you truly for that reply. I'm afraid my knee jerk response was inappropriate given the further background you provide.
I find it quite fascinating that you spoke with the University of Colorado researchers regarding their findings! I emailed them as well, and they were responsive right away, but discouraged me from drawing the conclusion I did. Having said all that I will add that over time I have tried everything from snorting trehalose to making hard candy that I could melt slowly in my mouth, but have ultimately settled on eating. I do have other minor supportive pieces of evidence that leave me to believe the oral route is not wholly ineffective. I just don't always recall them all at the same time. One more I do recall is a blogger who goes by the name "Gene Veritas". He has Huntingtons Disease which is also a polyglutmate disorder almost identical to SCA1 in it's symptoms, and he has been taking trehalose for decades as well and shows no onset as of yet and nearly a decade after his mother saw her first symptoms. Interestingly enough I think he may have stopped now plus he did not take anywhere near the number of supplements I take although if I remember correctly he did take pterostilbene and creatine as well. He got his ideas from a doctor LaVonne Goodman who ran a blog years ago discussing supplements for Huntingtons and with whom I discussed whether or not to try oral trehalose way back in 2015.
Anyways, thank you for the discussion. You have made me take a new look at what micronutrients might further enhance autophagy. Science is changing almost daily these days and the internet is amazing in making the research quickly available.
Finally and on a wholly separate note I will add that I have tried something new recently that seems a bit "snake oilish" to me, but truthfully the results so far are quite dramatic. Of course, as with anything else I will assume that the early results are pyscosomatic and not real up and until they last for some time. The new discovery actually comes from my sister who is a licensed physical therapist in New Milford, CT. She encouraged my to come to her office and try a new electro-stim machine called a Neubie. So far the change in my balance has been lasting and noticeable. I intend to go back for a total of 4 treatments at my sister's recommendation, but so far I feel as if my balance has returned to almost 90% of normal when I walk.
First, I'm certainly not going to ban anyone here for making recommendations. We're just here to exchange ideas about improving health and longevity and value an open and vigorous discussion. So you have no worries there.
Certainly what you are doing appears to be working. The proof of the pudding is as they say in the eating. So you are to be congratulated on what you've accomplished.
The only fine point I'd make is that given that you're throwing everything including the kitchen sink at the problem (which is exactly what I'd be doing in your situation) there is always the question of what is working and what isn't. It would be impossible to tease everything apart given the myriad of treatments you are running simultaneously (again - exactly what I'd be doing in your shoes). In a situation like this it's likely that you're getting most of your benefit out of a few of your therapies, a lesser benefit from others, and maybe a few aren't doing anything at all (perhaps they work through the same MOA as something else you're doing that has a stronger effect). However if I had stalled a progressively fatal disease for 7 years I wouldn't change a thing. But obviously for the people that don't have the financial means to duplicate exactly what you're doing it would be nice if we knew what compounds were giving you the most benefit.
The only reason I bring up the issue of trehalase is that there may be some strategies to minimize it being catalyzed into glucose that others might have an interest in. I actually talked to one of the authors from that University of Colorado paper the human trial of oral trehalose several years ago. They didn't continue that research path because they were hoping for a larger response than what they saw (but there definitely was a positive effect). They acknowledged that it was probably because the trehalose was getting broken down in the gut before it was getting absorbed. I brought up potentially doing a liposomal encapsulation and they said it was something that they discussed amongst themselves and thought it would help. Also talked about the rectal route which they also believed would improve absorption but most patients were somewhat less than enthused about that route. I actually tried to entice a supplement maker that does a lot of liposomal encapsulations to offer a trehalose product but at the end of the day they didn't think they'd sell enough.
The use of trehalose as a therapeutic is fascinating and has been on my radar probably almost as long as it has yours. Seeing it discussed in a thread usually attracts my attention.
Thanks for sharing your knowledge and your experience with us.
Edited by 2Sunny, 14 January 2023 - 02:01 PM.
Posted 07 February 2023 - 05:12 PM
Hello @2Sunny,
First I will introduce myself. I'm Mike from Poland, 41yrs, genetic Ataxia SCA 1. I have, so far, very little symptoms, slightly worse balance, not so smooth movements and little tremors when performing specific exercises. But my general condition is pretty good. I ride the bike every day, go windsurfing, snowboarding and staying active in general. I'm runing an IT business. I have been following this thread from the begining and I agree 100% with what you wrote here in all your posts. Big THANK YOU for that! Your story truly gives hope!
OK. And now some of my latest thoughts.
I have been taking trehalose orally for around 6 moths now but I'm also concerned about it's oral use effect once it digested as there is very little studies about oral route proved to be stopping the progression of SCA1. Did you at any point consider taking it intravenously and if yes, are you familiar with any brand or trehalose product that could be taken intravenously?
Atother topic: - did you hear about Intrabio company working on IB1000 N-acetyl-DL-leucine https://intrabio.com...s-publications/ which they already confirmed had a substential positive effect on Ataxia -Telangiectasia (about 11.0 points improvement (48.88%) in SARA score). Here is their latest study:
https://pubmed.ncbi....h.gov/35128617/
I know Ataxia -Telangiectasia is not the same as SCA 1 but if this IB1000 N-acetyl-DL-leucine works on several neuro degenerative inherited deaseases (like GM2 Gangliosidosis, Tay-Sachs and Sandhoff) maybe there is a chance it would work with SCA1 too. But I'm not sure if the N-acetyl-DL-leucine used by Intrabio is the same drug (amino acid) that can be found avaible to buy online. As they use their own names like IB1000, IB1001 or NALL.
What I found is this:
2013 trial with acetyl-dl-leucine
https://www.ncbi.nlm...les/PMC3824630/
but they used acetyl-dl-leucine not the N-acetyl-DL-leucine. yet, there was a noticable improvement in SARA score in this study.
My only concern is that the product made by Intrabio (IB1000 N-acetyl-DL-leucine) is a different drug than acetyl-dl-leucine.
this is acetyl-dl-leucine (avaible to buy )
https://www.mon-phar...30-tablets.html
and this seems to be N-acetyl-DL-leucine, but I'm not sure if it's avaible and safe to buy and intake as a regular drug:
https://www.sigmaald...uct/sigma/a1001
I wonder what are your thoughts on these topics.
Have a good day!
Mike
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