Trelahose?

[neta]

What happened to our trelahose discussion and Joe?

[HarryB Administrator]

Hi Neta

As you know Bioblast were testing the effect of trehalose in SCA3 and had some initial encouraging results. However the safety and efficacy has not yet been established. I am not aware of any further results pertaining to this.

Best wishes

Harriet

[neta in reply to HarryB]

Thanx Harriet. N

[sunvox]

Hi Neta, I'm here. Was waiting to build some more interesting information. Progress is VERY slow. The doctors at Harvard are still trying to build support enough to get funding for a clinical trial of orally ingested trehalose.

I will provide this additional information but NO ONE is to take this as a recommendation for ANYTHING. I am just relaying facts.

Facts:

1) I and my family continue to take trehalose and niagen daily.

2) In addition to putting trehalose in my morning coffee, I have been sniffing a tiny pinch of trehalose in my nose twice daily for about 4 months.

3) My father had his annual SARA test. His score remained unchanged from last year.

4) Approximately 1 dozen individuals worldwide have communicated to me via email in regards to their trying trehalose and/or niagen. 3 individuals have reported feeling some benefit. All 3 have SCA3.

In terms of research I found a paper on vitamin B in the form of niacin that was used successfully to treat mice with Huntington's Disease as well as clinical trials ongoing in England for people with Friedrich's Ataxia being treated with vitamin B. Vitamin B proved DANGEROUS to some people and should NOT be taken without the guidance of a doctor, but I contacted the doctors involved both in the human research and the mouse research and they all agreed that they hope Niagen could be a better answer than niacin since it does not appear to have the same dangerous side effects and the way in which Niagen works in the human body appears superior to niacin, but again I provide this information just to keep people updated on progress or changes.

NO ONE SHOULD TAKE ANYTHING BASED ON AN INTERNET POST!

Cheers

Joe

[Spanner36 in reply to sunvox]

Hi Joe,

thanks for the update. You may have seen that I am trialling ingested Trehalose for my OPMD condition, however I'm just not sure what does I should be taking, as there is no guidance. I'm into my third week now and taking 2 x teaspoons twice/day. We'll have to see if anything improves. Nothing yet. I'll keep you posted

[sunvox in reply to Spanner36]

You have my heartfelt best wishes! I hope you'll share your experience regardless if it's positive or not.

[neta]

Dear Joe,

Good u r okay and thanx for your response. Does this mean that Trehalose (if it works) is just for SCA3? Also what is SARA and/ Niagen? BTW I fired off another email of inquiry to BIOblast. N

[sunvox in reply to neta]

Hi Neta!

SARA stands for Scale for the Assessment and Rating of Ataxia. It is a series of coordination tests designed to give a numerical value to the level of ataxia a person has. Normally patients with any type of SCA progress steadily worse year over year. The fact that my father appears to have halted or slowed in progression is a miracle unexplained by existing science.

No. In theory trehalose MAY be effective for any PolyQ disorder which would include many SCAs and Huntington's Disease, and OPMD. My family has SCA1.

Niagen is the vitamin B alternative I wrote about in my first post. It is my BELIEF without human scientific trial evidence that Niagen repairs damage to Purkinje cells in the brain. Here is a quote from one study in mice. It says mice who were given ataxia and then treated with NR(Niagen) had more Purkinje cells than mice with ataxia who were not treated, and furthermore WT(normal mice with no ataxia) had no change up or down in Purkinje cells. Death of Purkinje cells is believed to be one of the major underlying pathologies of many ataxias.

"the numbers of Purkinje cells in Atm_/_ mice treated with NR or NMN were significantly greater than vehicle-treated Atm_/_ mice, whereas NR and NMN had no significant effect on Purkinje cell numbers in WT mice (Figures 7D and S5A)."

That study was this one:

NAD+ Replenishment Improves Lifespan and

Healthspan in Ataxia Telangiectasia Models via

Mitophagy and DNA Repair

BUT as I said above Niagen is a vitamin B and there are several types of vitamin B on the market today, one of which is being tested in a clinical trial in England, BUT people have overdosed themselves on Niacin (the vitamin B in the clinical trial) and made themselves VERY sick so no one should try Niagen without first consulting their doctor.

However, having said that, it is my belief that the combination of trehalose and Niagen are worth investigating in human clinical trials. The THEORY is that trehalose would clean out bad proteins and Niagen would help repair cellular damage in the brain. That is what I am working hard with the Harvard doctors to get done, and that is why my family and I all are taking both trehalose and Niagen daily.

There have been several human clinical trials of Niagen, but their purpose was merely to establish the safety of the vitamin and to prove that it did in fact raise NAD+ levels in humans. The trials did not have a lot of patients, and they were run by people who have a vested interest in the vitamin.

I hope you hear something good from BioBlast!

Best Wishes, Joe

[neta in reply to sunvox]

Thanx for your detailed response, N