Seelos Therapeutics’ experimental drug SLS-005 is IV Trehalose. SLS-005 contains the active ingredient trehalose… that has been shown to penetrate muscle and cross the blood brain barrier.
Trehalose Fast Tracked (by FDA) for Spinocerebellar Ataxia empr.com/home/news/drugs-in...
You can google SLS-005 and find a multitude of links.
Very interesting. Good find Gcf51!
"The designation is supported by data from an exploratory, randomized, parallel-group, dose-escalation and dose-controlled phase 2a study (ClinicalTrials.gov Identifier: NCT02147886), which evaluated 14 patients with SCA type 3 over a 6-month period. Patients were randomly assigned 1:1 to receive either 15g or 30g of trehalose via intravenous infusion once weekly for 24 weeks.
Results found that on average, the Scale for Assessment and Rating of Ataxia (SARA) remained stable in all patients at 6 months; 6 patients who received treatment for 12 months continued to maintain stable SARA scores. Normally, during the natural progression of the disease, patients with SCA3 would see an increase on SARA within 12 months, indicating worsening symptoms."
ie. Fast Track: when a drug in a Trail shows so much promise, it shouldn't be held back.
And, in diseases involving plaques (where it is believed that dormant cells are still alive) there may be complete reversal.
This is a truly interesting and hopeful development. Even if the underlying science is a bit of a white knuckle ride. I miss being able to ask my Dad about this sort of stuff.Fast-tracking by the FDA should not be viewed as an endorsement of efficacy. Rather, it indicates an urgent need for a therapy where currently none exists.
I'm tempted to fall into the trap of jumping the gun and finding the home-brew version. A popular hobby on this forum. Not that I kid myself it's going to work. The rat dose works out to a full half kilo bag a day, and even then it appears that the human intestinal function would further inhibit absorption to the blood stream by oral ingestion. No- iv is the way to go (and I'm not about to start shooting up my own sugar solution)
But I have a recipe for lemon squash (lemonade I think it's called in the colony) which uses 4 lemons and a kilo of sugar. I think this sugar is half the sweetness of glucose. Gotta give it a go. If it tastes OK (and the glucose version is delicious) I can pretend it's a health tonic.
I'll let you know 😉
When converting animal to human dosage an adjustment is needed due to differing metabolic rates. In the case of rats, that means dividing by their dosage per kilogram by 8 to arrive at human dosage.
I use 1 - 2 teaspoons most days which was recommended by my Functional Med Doc (who is a highly regarded one) Maybe I shouldn’t bother. I don’t understand how to calculate the dosage. I don’t want to increase and risk C-diff. Have you seen the other studies on it?
Why IV administration is highly preferred:
ncbi.nlm.nih.gov/labs/pmc/a...
"In a recent open-label study without placebo arm in SCA3 patients, daily administration of 100g trehalose via oral route exhibited a mild improvement in the severity of the disease. Gastrointestinal side effects were reported in seven patients, and two withdrew due to severe diarrhea. In humans, around 99.5% of oral trehalose is enzymatically metabolized in the small intestinal epithelium [to glucose] and is not readily absorbed as an intact molecule, hence larger doses of trehalose is required to achieve adequate blood concentrations and this might lead to gastrointestinal symptoms such as diarrhea and flatulence."
jpet.aspetjournals.org/cont...
"Single Daily Administration of Trehalose Increases Putamenal Dopamine and DAT in AAV1/2-HourA53TaSynLesioned Macaques. Macaques receiving AAV1/2-hourA53T-aSyn and treated with trehalose (2.67 g/kg per day) had significantly higher putamenal dopamine."
The human equivalent dose is about .86 g/kg, about 50 grams daily for a 60 kilogram human.
So based on the foregoing data points, a useful daily oral dose of trehalose would be 50-100 grams which is quite a lot.
If it were sugar that would be 12 teaspoons. Doing it once a week would be okay if it made a difference. Worth it?
C-diff associated with high consumption.
This is unfortunately an example of why we must research all this to great depth because this is one of if not the only substances that I did not deep dive research because I invested a lot of money in a doctor who put in writing, 1 teaspoon Trehalose a day.
Thank you Park Bear!
So should I scrap it completely?
1 dose a week?
I need to dig more.
I posted a couple other substances you might find interesting. Huperzine A is an example. I’m researching how to reduce glutamate Excitotoxicity. To actual researchers I am like a kid playing dress up but I’m giving it my best while I presently have time to.
The numbers I cited were for daily administration. Only you can decide how to proceed. Here are some other ideas worth looking into - My list of interventions that may help reduce progression. Thiamine, exercise and cinnamon particularly helping me:
• Vigorous daily exercise
• High-dose thiamine, courtesy of Dr. Antonio Costantini highdosethiamine.org/ healthunlocked.com/cure-par...
• Cinnamon, extensively researched by Prof. Kalipada Pahan, PhD. My report healthunlocked.com/cure-par...
•Mannitol parkinsonsnewstoday.com/202...
healthunlocked.com/cure-par...
A recent study came up with no effect but some people have said it helps.
• Ambroxol healthunlocked.com/cure-par...
park_bear, Your post sounds like oral is out of the question and a visit to the hospital once a week for IV therapy would be required.
Yeah. As I said the (lack of) absorption in the human intestine means iv is the only option for any therapeutic effect. Hopefully the trial results will be available soon
"lemonade I think it's called in the colony"
Dream on WTP! Shall we reverse that? 
Very interesting. It looks a lot like mannitol. I wonder if it’s worth a try as we would have to take it orally.
Since oral is pretty well out of the question, I guess we have to wait for approval and possible off label use. Do cancer patients go to a hospital or a clinic for Chemo? Hum... Misfolded proteins, maybe should be a Chemo drug.
amazon.com/Thealoz-Trehalos...
Eyedrops that Joe from NY was/is (?) using and recommended. Husband is using them twice a day.
Joe from NY had suggested and was using it himself these eye drops. That is what my husband has been using for quite some time. He needs eyedrops, why not these that contain trehalose?
amazon.com/Thealoz-Trehalos...
Interesting thought, optic nerve possible direct connection to brain. Bypass possible adsorption in body and go straight to brain.
Despe Has your husband noticed any improvements or side effects?
Attempted to see if topical would work.
ncbi.nlm.nih.gov/labs/pmc/a...
I wonder if the huge oral quantity needed for effectiveness would be more effective than Ambroxol? To have the same dose as the Ambroxol trial, one has to ingest 42 pills a day. That makes a bowl full of Trehalose seem not so bad.
I have searched adsorption, Haven't found anything other than so to speak a protective layer. But the article says "has been shown to penetrate muscle" so maybe.
You might be curious about farnesol.This Trehalose discussion reminded me of it
I will post on it
Before being active in the forum I researched Farnesol. I was basically unable to find a source. DoTerra told me that it was not present in any of their products in significant quantity. I did try 5 drops a day of turmeric oil (aromatic turmerone (ar-turmerone)). And, still take a BCM-95 cap a day.
Oh... Almost forgot I did buy a product sold as additive for cosmetics, but it had more preservative than Farnesol.
If you can get the 75mg/cap, you won't need 42 pills a day but a lot less. This is what I purchase for my husband. He has 8 pills a day not 42.
Trehalose is anti fungal. Farnesol is anti fungal
Both look “promising” for PD.
Is PD fungal or made worse by a fungal infection? Is our brain trying to fight off a fungus?
Why is Ambroxol not approved by the FDA? 
Best way to track changes?
Intermittent fasting 
Fasting for Parkinson's 
