I recall an alternative to mannitol being mentioned in a post. Can anyone advise? I left for a 2 week break, forgot my supply and can’t get it locally. Thought the alternative might be worth a try. Fingers crossed!
Mannitol alternative?: I recall an... - Parkinson's Movement
Xylitol or Trehalose are both sugar alcohols, not identical, but close enough.
If you are not familiar with this website you most definitely want to start reading it:
also this is a link from the article above:
This is utterly interesting, Sunvox. Too bad it cannot be tested on humans the way mannitol is...
My opinion . . . there is no money to be made from a sugar, and trehalose was being studied by another Israeli firm, Bioblast. BioBlast tried to patent an injectable solution of trehalose for treatment of SCA3 and got as far as Phase II trials before going broke. Notably the Phase II trial actually had positive results: globenewswire.com/news-rele... but they still went bankrupt before they could get it to market. Junaxo, the virtual firm, linked above is stalled with no funding. Meanwhile pharma companies continue to spend millions on drugs and medical procedures that would be outrageously expensive. Honestly, I don't think trehalose or mannitol alone is an answer, but as I always advocate I think there is a combination of supplements that will work to slow progression for nearly all neurological disorders, but getting researchers to try a multi-modal solution and funding such research seems impossible so we are stuck with anecdotal evidence that we share online. Also the fundamental problem with trehalose and mannitol is that only the tiniest amount could possibly be making it to the brain which is why I use eyedrops made of trehalose ( thea-pharmaceuticals.co.uk/... ) and sniff a tiny pinch of mannitol once a week. The eyes and the nose turn out to be excellent conduits for chemicals to reach the brain.
This funding question is revolting. Health is not a merchandise, it's a human right.
Your idea of using eye drops is pretty smart. I could give it a try myself.
Autophagy seems to always play a role in the possibly healing process.
My way of activating autophagy is through fasting.
Commentaries very welcome.
Couldn't agree more You are definitely on the right track. I think intermittent fasting is the single best lifestyle change PwP can take after exercise.
Any thoughts about the most efficient IF method ?
5:2 ( two times 36 hours fasting every week) is what I am doing now.
Thinking of eating only in the evening, plus maybe long fasts every 3 months or so.
I believe Jim C. is also doing IF. Maybe he can chime in as well. I am not hard core about my IF. I'd say 4-5 days a week I do not eat between 7PM and 3PM the next day, but on the other days I will eat after 11 in the morning. I don't know if I'm defeating the purpose or not, but I do feel less sluggish on the days when I fast.
I follow much the same routine, Joe. Approximately 4-5 days per week, I don't eat until 3:00 p.m., but I eat at noon other days because I frequently have lunch dates with friends or former coworkers or clients. One thing which intrigues me is that my sense of smell is improved on the days I eat later.
Joe, I assume since it's basically sugar water that no prescription is needed. Is that right? How many drops in the eyes do you take each day? Equal amounts in each eye? Thank you for sharing your knowledge and innovation!
Hi Jim, I was pleasantly surprised to learn of the eyedrops from another HU member. They are an over the counter treatment of dry eye, and do not require a prescription. I do one drop each eye morning and night. I have a hard time doing it. Some weird anti-eyedrop reflex
Thealoz : amazon.com/THEA-392-7142-Th...
I have a terrible time putting eye drops in. My body reacts with more stress than it does when I give myself injections.
Hi sunvox, your information about Trehalose is interesting and original. How did you find it? Is it useful for you? Do you think that it can adequately to replace Mannitol by mouth? Thank you.
Hi Fed - I do not have PD, but rather Spinocerebellar Ataxia Type 1, or SCA1. They are, however, very similar in many ways. In any case, 6 years ago I used to visit a forum that was maintained by the National Ataxia Foundation. That forum has since closed down, but it was there that I first heard about trehalose and ran into people that had been taking it by mouth for years with apparent benefit. Then I came across Prof. Serbin's blog ( curehd.blogspot.com/search?... ). He has Huntington's disease but is now a decade past when his mother first showed symptoms, and he remains symptom free. He takes only trehalose, blueberry extract, and Creatine.
I am not a scientist, but based on my reading of the available scientific literature, I believe mannitol is superior to trehalose in it's ability to cross the blood brain barrier, but for me mannitol causes severe intestinal difficulty so I stick with trehalose. Once either molecule enters the brain, the available research seems to show that trehalose and mannitol act the same in attaching to mutant proteins and cleaning them out.
Yes, I definitely believe trehalose is helping. I have now been taking trehalose for just over 3 years. I had early symptoms including inability to stand on one leg (balance issues), slurred speech, shaky handwriting, fatigue, and inability to use exercise to regain strength. I would note that the symptoms were mild, and I could mask them well enough that I looked "normal" to the outside world. Today, though, I am 100% symptom free.
However, I have gone well beyond just taking trehalose. Here is a page that I update regularly that explains what I am doing and why:
Do you think one sniff of mannitol is enough per week? Others seem to take half a tsp a day ? Is that because it gets absorbed better that way??
I also take a heaping Tbs of trehalose daily. I only sniff mannitol once a week because I do not have access to pharmacy grade mannitol so I have no idea what contaminants may or may not be in the mannitol plus the sniffing is in addition to eating trehalose and taking eye drops so it's just one part of what I am doing.
So what is the main purpose of trehalose pls? Can you get tablets rather than powder ? I looked at those eye drops you suggested. Do they have enough trehalose in them ? Thanks so much for all the info
There are several theories that researchers have recently proposed regarding root causes that all Parkinson’s patients may share. Those include things like Calcium channel trouble, gut biota trouble, and most likely to me, a bad protein called alpha-synuclein. Trehalose is like mannitol in that scientists demonstrated in the laboratory both in cell cultures and animals that mannitol and trehalose can attach to the bad protein and allow the body to remove it before it causes damage in the brain. So the hope is that by eating, sniffing, and taking eye drops one can get a teeny tiny amount of mannitol or trehalose to reach the brain and clean out some of the bad alpha-synuclein protein.
No I do not believe it comes in a pill form and yes the eye drop have a teeny tiny amount in them, but it is my opinion that since PD takes decades to progress that means the damage from alpha-sy is happening slowly so perhaps all it takes is a teeny tiny amount to slow the process down.
I should note there are other supplements that scientists discovered that do the same thing such as Chinese Skullcap (baicalein) and curcumin. That is why I also take Theracurmin which is a scientificly engineered form of curcumin designed to reach the brain. Scientists made it to help with general mental health, but I take it in hopes it is helping to clean out the bad protein in my brain. (I also take baicalein otherwise known as Chinese. Skullcap)
Joe in NY
Joe in NY, you are an inspiration to us. Ordered the eye drops, but they haven't arrived yet. Both my husband and I use moisturizing eye drops, so "kill two birds with one stone."
The info exchange here is terrific. So thanks all for sharing. Well done. As much as i understand autophagys benefits, I find it difficult to fast for any appreciable amount of time. I understand there are substances that can mimic the effects of fasting. If I recall correctly, resveratrol, nicotinamide riboside are two.
I agree about the shamefulness of greed in establishing standard of care. Dr. Dale Bredesen seems to be going against the grain successfully with his Alzheimer's protocol. Fascinating and brilliant man. Check out his lectures on youtube and podcasts. There are very similar parallels to PD in what he is doing.