I do not have PD; I have SCA1. SCA1 shares similarities to PD in it's pathology but progresses faster and is always fatal. No one should ever try anything based on some comments on the internet without first consulting with their personal physician. I have eliminated my symptoms and feel better than I have in a decade so I just wanted to share what I am doing. First, here is the why:
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EDIT: I want to emphasize at the outset that I firmly believe the single most important element that I am doing is exercising 30 minutes 4-5 times a week. I realize how difficult that may be but even if it's on a stationary bike I have to believe it would be helpful.
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Using a multi-pronged approach to neurological disorders:
I want to emphasize that I had symptoms including: inability to stand on one foot, difficulty walking downstairs, difficulty with clear speech, diminishing handwriting, fatigue, and inability to use exercise to increase strength or endurance. All my symptoms are now gone and I am gaining strength and endurance again. Here is what I am doing:
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1) Treadmill running 4-5 times a week for 30 minutes at 80% max heart rate followed by 10 minutes cool down
2) A diet mostly vegetarian with little or no dairy, processed food, sugar or meat and rich in cruciferous vegetables. Lots of oatmeal, egg white omelettes, salads, broccoli, spinach, Kale, brown rice, chicken breasts, and salmon.
3) Supplements: 40g trehalose in 2 cups of coffee, 3 squirts of trehalose infused water per day in my nose, 500 mg of niagen twice daily, 300 mg once daily of benfotiamine, 100 mg of pterostilbene once daily, 2000 IUs of vitamin D once daily, 20 mg once daily of PQQ, a vitamin B-complex vitamin from Natures Way once daily, 2 cups of green tea daily.
4) yoga 3 times a week
5) meditation weekly
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Joe in NY
Written by
sunvox
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Thanks for sharing. However I've yet to see a complete human study with Trehalose in Parkinson's or other neurodegenerative disease .
A recent study “Trehalose does not improve neuronal survival on exposure to alpha-synuclein pre-formed fibrils” (2017)
Trehalose exposure alone for 14 days did not change endogenous αSyn levels, while at 1.0 µg/mL or 2.5 µg/mL PFFs significantly increased total high molecular weight αSyn, even in the presence of trehalose, again suggesting trehalose fails to remove PFF induced aggregations.
Actually trehalose was the first supplement I tried exactly BECAUSE it DOES have human evidence from a human clinical trial in a neurological disorder virtually identical to mine:
Bioblast Announces Phase 2a Results of Trehalose in Patients with Spinocerebellar Ataxia Type 3 (SCA3)
I am in contact with doctors in the US that are currently moving this to a Phase III clinical trial. The single scientific issue that confronts us is whether any meaningful amount of the molecule enters the brain when taken nasally or orally, but that is why I linked to the one and only existing human clinical trial of oral trehalose. (BioBlast is administering trehalose by injection and they plan on a price tag north of $100k per year with a patient needing weekly injections for life.) In addition, if you read my posts you would find correspondence I have had with Dr. Schmahmann of Harvard Med as well as Cambridge researchers that are all interested in my thoughts. Lastly, as I have mentioned, trehalose was the first supplement I tried on myself, my father, and my aunt. The results for us were dramatic AND I now have more than a dozen people worldwide that have tried trehalose and of those that have maintained contact more than half are reporting positive changes in their life.
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In addition you didn't read the complete study you posted. From the same study you quoted where they found no change in aggregates, they did find improved cellular survival so the mechanism is not described, but the results are the same:
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"Although trehalose does not appear to remove αSyn aggregations, it may help remove toxic species of αSyn that are below detection sensitivity. Alternatively, it may physically interact with the αSyn aggregates reducing their toxicity or assisting in clearing cellular organelles damaged by αSyn, and thus attenuate cell death. To test whether trehalose alone alters the basal viability of neurons in culture, we exposed primary neurons to 3 different concentrations of trehalose over a 15-d period. We saw no change in cell viability at 1 mM but beginning at 10 mM and continuing to 25 mM we saw significant increases in cell viability with trehalose exposure alone (Fig. 5A)."
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They also found that trehalose enhanced "autophagic flux" and other research on protein aggregations have brought into question whether it is the aggregate or the misfolding that is toxic. The point would be that it is possible trehalose does nothing to reduce existing aggregation, but rather prevents misfolding and thereby slows future aggregation.
Also, and most importantly - no one should try anything without first talking to a doctor, BUT the reason I posted is because this is working for me and a couple other people around the world with ataxia and Huntington's. Unfortunately for us patients, none of these supplements have human clinical trial data to support their use for our illnesses nor are they likely to ever attract enough money and interest . . and THAT is a sad fact. As a result, the best we can do for now is try on our own and share our results. My results with this regimen have been very good.
I apologize. I should not have gone negative at all. Your intent is to bring to light facts that are important, and that is a good thing. Keep posting your concerns. All I ask is that you read my posts thoroughly. I deleted my negative comments. Joe
and, I would note when you read the study you find they were trying to test the effect of lower doses of trehalose to find if there was a threshold level that impacted aggregation. They clearly maintain the potential value of trehalose but were trying to further the investigation of the cellular mechanisms involved.
It appears that 1) target dosing 2) duration of therapy and 3) ability to cross barrier are the main factor for the efficacy of trehalose as disease-modifying therapy . I see that a fund is granted by Michael Fox foundation since 2013 for the oral use of Trelohalose for Parkinson's. "Development of Trehalose as a Disease-modifying Treatment for Parkinson’s Disease", michaeljfox.org/foundation/... . I haven't seen any update since. Bioblast Pharma adopts the IV approach in their studies to readily cross the brain barrier.
Hope the price tag won't reach that high as mention for a cheap natural compound. Yes oral route is possible given the right dosage for a specific disease.
Pharmacokinetics associated with an efficacious dose of trehalose, an autophagy enhancing disaccharide in development as a treatment of Parkinson’s disease.
It is the JNX3001 based on Trehalose as treatment for Parkinson's which funded by Michael Fox Foundation. Currently seeking for funding ($6.5M) for the second phase clinical study!
Eventually there should be a global fund to invest all those clinical trials that stalling for years or even cancelled, otherwise they depend on the financial interest of the inverstors and the pharmaceutical corporations (if it can be developed as drug and patented) and the good will of the non-profit foundations.
This may be a totally stupid question, but could there be some relationship between trehalose (a reducing sugar) and mannitol (sugar alcohol) that makes them both beneficial neurologically?
(I took a tbls+ of mannitol daily for six months with no effect.)
I am not familiar with mannitol and will have to do some research before answering, but I will say this about "no effect". IF and that is a huge IF, but if trehalose is working all that would happen would be a slowing down of progression. One would not feel any different, and not until a decade had passed could a person even begin to guess whether it was helping because only then could you say: "yes, I have progressed slower than most" or better yet "my progression stopped a decade ago." Trehalose MAY be able to prevent damage, but it would NOT repair damage. IF mannitol is similar it may have the same "effect", and so hoping to feel better MAY have been unrealistic. Feeling the same would be a win.
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To me, my opening link is the key to my post. It's not about one supplement or one therapy or one drug. It's the combination of little pieces that together "fix the holes in your roof".
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I have a hobby of saltwater aquariums. I have been recognized globally as a leading hobbyist. My single most often given piece of advice when people are starting out is to find an aquarium they like and copy exactly what that person is doing because that dramatically increases an individuals chances of success.
There is some research out of Israel that mannitol has benefits to PWPs. There is a website, clinicrowd.info where they are collecting data from PWPs. Anecdotally, many people have reported improvements.
Thank you for sharing this very valuable info. I’m glad you are finding something that helps. Exercise is of vital importance, when one has PD and/or Ataxia, in my opinion. Keeping up on research studies, and participating, and helping yourself is very positive, and will help you, for sure.
When I was born, I had no esophagus. At 1 day old doctors at Yale New Haven Hospital operated on me and made me an esophagus. They told my parents, I would never play sports and would always have trouble eating. My father was an Hungarian immigrant. My first bike came from the junk yard. I wanted to go to a private school in town and everyone said I could never do it. I worked 8 jobs and got money from friends, family, and the school and went to the private school where I was the captain of several varsity teams and the school valedictorian. After that I went on to get a full scholarship to attend Dartmouth College, one of the nations most elite schools.
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My whole life people have been under estimating me, and even though I know this sounds incredibly like bravado, I believe in my heart and my brain that this routine or a slight variation of this routine is one possible solution for some patients with neurological disorders. Illnesses like Parkinson's, Huntington's, Alzheimer's, and SCA are late onset slow progressing diseases. It literally takes decades for the damage to accumulate. I believe science has shown us that if we attack this slow degradation with a multi-pronged response, some patients CAN beat their illness or at the very least slow the progression to a point where their lifespan is essentially normal. The key is separating the "snake oil" from what really works, and that is where researchers of today and the internet give us, the patients, an incredibly powerful new tool.
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Not everyone can do this nor is it likely to help people who already have serious symptoms, but for patients who are either asymptomatic with a genetic diagnosis or patients with early mild symptoms, I believe a multi-pronged approach combining exercise, diet, supplements and mental fitness provides the means to alter the course of their disease.
Wow! You are a hero in my book, Joe! You overcame unbelievable odds. I could tell, by your writing, that you, obviously, are highly intelligent and well educated. It isn’t bravado. I’m glad you shared that with me. I, also, have overcome a lot; however, not to the extent you have. I’m glad you are a champion of this cause, Joe. People, like me, we need people like you to help us pursue, lcauses of these neuro-degenerative ailments, that are so destructive. I was born a blue baby, and have a defect where a vertebral artery is attached to the cerebellum, where cranial nerves connect to the cerebellum. Therefore, it is inoperable, and I’ve had Cerebellar Ataxia symptoms my entire life. I’ve always had balance problems. I’ve never been able to walk a straight line, stride a balance beam correctly, or ride a bike, or skate. Additionally, I had childhood non-paralytic polio, which made me walk a little awkwardly. I had my legs in braces as a child. So now, I deal with post polio syndrome, plus Cerebellar Ataxia, and last year was diagnosed with Parkinson’s, after a number of years of symptoms getting progressively worse. In my younger years, I had learned to walk better, so it wasn’t too noticeable, and I managed to get a four year full scholarship to college. My parents couldn’t afford to send me to college, having four other children to raise. I worked throughout my six years of college and went to several well known schools, including Case-Western Reserve University in Cleveland, Ohio. I managed to eventually land a job at one of the biggest companies in the world, in supervision/management, so I had a good career, in spite of my medical problems. Working hard to accomplish one’s goals, and doing it on your own, like you have done, and I, to an extent, has made us tougher to withstand the difficult physical challenges that have come our way. Thanks again for sharing and championing research for these neuro-degenerative ailments. I will spend some time analyzing and improving my workout routine. I modify my workout to fit what I can do. I know it’s important to get my heart rate up. I will look into some more supplementation that might help too. Presently, I’m participating in a research study, with the Michael J. Fox foundation, and 23 and Me, DNA genetics. They are examining the role of genetics and other causative factors, in patients, who have been diagnosed with PD. I am on the Mediterranean diet. So, I also, am using a multi-faceted approach to helping myself be the best I can be, in spite of the physical ailments that I have. Wishing you the best, Joe. Doug
Holy Shimoly! You deserve the Lifetime Perseverance Award! Thank YOU for sharing. I hope people read your story and realize it's never so bad we should stop trying so long as we have air in our lungs and a brain that is thinking!!
At the risk of being the odd man out, I’m hoping you’ll share your thoughts on this link which I posted on the other thread. Seems like it's a serious consideration?
PWP are known to have a higher than average frequency of compromised gut health. Many of us have small intestinal bacterial overgrowth, leaky gut, etc. In other words, are not PWP more likely to have an infection from C. difficile?
sciencealert.com/common-sup...
The National Institute of Health
"A new study in the journal Nature indicates that trehalose-laden food may have helped fuel the recent epidemic spread of C. diff., which is a microbe that can cause life-threatening gastrointestinal distress, especially in older patients getting antibiotics and antacid medicines [1, 2]. In laboratory experiments, an NIH-funded team found that the two strains of C. diff. most likely to make people sick possess an unusual ability to thrive on trehalose, even at very low levels. And that’s not all: a diet containing trehalose significantly increased the severity of symptoms in a mouse model of C. diff. infection."
I read the link and the study you posted the first time, and honestly it's a "ho hum" to me. Truthfully I do not agree with the conclusions being drawn. I do not believe that trehalose was the cause of the outbreak, and even if it is the cause there is no correlation between trehalose ingestion and increased chances of getting the bug. It obviously is a preferred food source for the current mutated version, but it could just as easily have been some other molecule that fit a particular mutation. Also the prevalence world wide is tiny in absolute terms. Now if you happen to be one of the incredibly unfortunate individuals hit by this debilitating bug then obviously you will have a different opinion.
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Here's another story from my life that perhaps better explains my thoughts: I live in New York in an area that is heavily forested. You can not see any neighbors from my house and everyday I walk my dogs in the woods on a trail behind my house. As a result I and the dogs are frequently bitten by ticks. Several years ago a news story broke in the local papers because a teenage boy was bitten by a tick and died two days later. Upon careful investigation the doctors discovered an incredible tick born super virus had been the cause. Even worse researchers in the area found that 80% of all the ticks in the area carried the virus. My initial reaction was "let's sell the house and move to Phoenix". However, after much research it turns out most people who have grown up in this area carry an antibody to this exact "super virus". In other words the poor boy happened to have a particularly virulent reaction to this virus and that was tragic, but the "super bug" was not a danger to the general population so in the end there was no need to move to Phoenix.
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Now, having said all that, I must emphasize that I am neither a doctor nor an epidemiologist so this is simply the opinion of an educated person who read one report on a new "bug".
Appreciate the post/links, sunvox, but am curious how you arrived at your personal trehalose dosage of "40 g/day" - plus a couple nasal squirts - when the positive results of cited animal studies involved a dosage of 2.67 g/kg/day (80kg human conversion ≈ 213.5 g/day, or 7.5 oz/day).
Given the shortage of studies/results or 'evidence' available thus far (and the subsequent collapse of your argument in favor) I have a tough time understanding the degree of enthusiasm you appear to have for, and the extent of credit you give to, this particular 40 g/day of dissacharide for your current state of well-being (vs exercise, pqq, etc., etc).
Like 'MBA', I think the "new study in the journal Nature [which] indicates that trehalose-laden food may have helped fuel the recent epidemic spread of C. diff" will keep me on the fence - at least until a more definitive study comes along (I don't think I have a C.diff antibody).
C-diff is very, very bad. My Dad got that while in a nursing home. He had a stroke and had to have care in the nursing home. They had to quarantine him, and visitors had to wear protective clothing. It was horrible, a nightmare for him. Diarrhea all the time, and then he became demented on top of that. Just before he died he had become so thin, he looked like he had been in a concentration camp. I, for one, want nothing to do with C-diff.
I've read all the post and all the links, but have not studied them thoroughly. Still, it seems to me, the data linking it to Parkinson's is minimal. I have a hard enough time researching Parkinson's much less trying to figure out whether therapies that affect other neurodegeneration will affect Parkinson's in the same way. I can easily imagine what works for one illness has little effect on another. Secondly, aside from the issue of the risk the PWP, is the issue of contributing to what the health professionals in the links I posted described as a serious epidemic for a benefit with such thin data. Third, there are a lot of supplements where the data is more robust regarding both their effectiveness and connection to Parkinson's.
Considering the severity of the consequences for being wrong on this one, for myself, I cannot bring in the jury.
The second link on YouTube from the 56 conference of the American College of Nutrition was superb and I thank sunvox for that and for sharing all his work.
Thank you. I will continue to study up on as many topics that may have a Parkinson’s/neuro-degeneration connection as I can. One of my favorite mottos is “ knowledge is power”!
I would be very interested in whatever supplements you are talking about:
"there are a lot of supplements where the data is more robust regarding both their effectiveness and connection to Parkinson's."
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Also I vehemently take issue with everything you are saying.
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1) "I can easily imagine what works for one illness has little effect on another".
ALL of the research I linked speaks to the contrary of this point, AND THAT is exactly what the doctors in the video you like are supportive of. These molecules show general neuroprotective benefit THAT is the point. A Parkie brain is suffering multiple failures so any hope to be had must attack different angles of general brain health. Looking for a magic Parkinson's specific bullet is ridiculous. The very nature of Parkinson's defies specificity.
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2) "Secondly, aside from the issue of the risk the PWP, is the issue of contributing to what the health professionals in the links I posted described as a serious epidemic for a benefit with such thin data"
First, I take issue with the words "thin data". Second, you are not contributing to an epidemic. IF you accept the premise of the paper it is the presence of trehalose in the food supply that is a problem NOT your individual consumption PLUS you are only talking about ONE of the supplements.
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3) "Third, there are a lot of supplements where the data is more robust regarding both their effectiveness and connection to Parkinson's."
I will reserve final judgement on this until I see what you post, but I have seen nothing posted on this website that even comes close so I will be VERY surprised if I agree with this assessment as well.
You’ve made a lot of good points. I do not vehemently disagree with anything you said. I agree with pretty much everything you said. I’m just not ready to take Trehalose based on the data you presented. I need to read more about it. I feel like you have misinterpreted my comments or, more likely, I do not express myself well. If you are offended by my comments, I apologize. Thank you again for sharing all your research. Your links are good and have stimulated important conversation, all of which is very much appreciated.
I totally agree that the most effective therapies are going to be multipronged. And I believe that a multipronged approach that benefits one neural degeneration will likely benefit other neural degeneration, but, for example, what cures SCA1, may well not cure Parkinson’s.
You don’t have PD. All I meant was, therefore, technically speaking, whatever it is that has made you symptom-free, may be of no relevance to PWP. More important, because you are administering many therapies, it’s impossible for you to know why you are symptom free. I suspect it is due to the synergy from a combination of therapies, much more so than to one therapy. I believe many of your therapies would be beneficial to PWP and I administer some of them myself.
I consider data to be compelling and robust when there are phase II or phase III trials going on in many locations, which is not that yet the case with trehalose. It looks promising, but because there have not been a lot of peer-reviewed studies, the data supporting Trehalos as a safe and effective therapy for Parkinson’s is speculation and it’s important for us to keep in mind that the vast majority of all trials begin with speculation and end in failure.
When you say, “I would be very interested in whatever supplements you are talking about:” it sounds as though you are questioning whether or not, as I said, "there are a lot of supplements where the data is more robust regarding both their effectiveness and connection to Parkinson's." Surely, you are not questioning whether or not there is more robust data on supplements for Parkinson’s than Trehalose? I must misunderstand you. The data is overwhelming that there are a lot of supplements more effective than Trehalose and I’m surprised that you say you haven’t seen any of it on this website because excellent researchers like yourself have posted hundreds of links with robust, compelling data of safe and effective supplements. (I am not going to, now, go back and find every post. I daresay anyone who reads this forum regularly would acknowledge that there are hundreds of posts of links of robust data regarding supplements.) But, here are two that have been posted in the last few days. (By my posting these links, I am not endorsing every statement, I am simply providing you a list of supplements with data, many of which excels the data on trehlase.)
Alright, thank you for the contemplative reply. I think we can agree to disagree
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I hope you will forgive me though as I continue to offer counterpoints to your discussion because I believe strongly that every piece of the regimen I posted plays an important role, and I fear your hypochondria may prove infectious to others, and I feel that would be unfortunate.
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First - I'd like to revisit the idea that the research is not specific to Parkinson and so not ideal. I have Spinocerebellar Ataxia Type I. Not one of the studies above is linked to SCA1. If I had used that logic I would never have tried. Also, people around the world are achieving success with this regimen and they have conditions as varied as OPMD, SCA6, Huntington's, MLS, and SCA1. I know this because I have received emails from people from Thailand to Canada to Australia to India and numerous here in the US.
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Second, I am intimately aware of Richard Melvin's "stack". It is working for him and that is proof enough for me, but first notice that vitamin B's account for 2000 mg of his "stack" including nicotinamide and thiamine, AND he quotes the same research I do. Furthermore his other research is scant and NOT Parkinson's specific. In other words if you want to list a supplement with a greater amount of research that is Parkinson's specific you'll need to try again. In fact one of the supps he uses CoQ10 actually has a second follow on clinical trial that was a multi year multi thousand person trial proving a complete lack of benefit. Lastly, Richard's video barely mentions supps and the other video you posted is the same one to which I linked above which demonstrates the benefit of a "healthy diet" and exercise, but says absolutely zero about supplements.
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Third, I would point out that each of the supplements I list have been vetted in human clinical trials on actual humans and/or are currently being used to treat various conditions today. So in terms of safety I'm not sure you will find a much safer list. The supplements on my list are 1) sugar that is low cal and good for diabetics 2) vitamin B 3) blueberry extract, and 4) vitamin D. All these items have "poison" studies that essentially prove you have to drown in the stuff in order for it to be harmful. (Except for PQQ)
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My final comment is just to say that no matter what people should talk to a doctor before they try anything, and my point here is just to try to allay the concerns that people may have after reading your thoughts, but each of us has the absolute right to come to our own conclusion so if your decision is this is not right for you then, of course, I respect your choice.
I am a hypochondriac. Ha. I'm wondering if PD or neural degeneration makes us all hypochondriacs? As much research as you do, you're probably hypochondriac, too. Well, you've given me a lot to digest.
Thanks again for being such a civil person online. That is a rare feature, and I truly appreciate that. You are a wonderful "breath of fresh air".
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Now, one more thought . . . every supplement on my list is also on Richard's list except for trehalose, and trehalose will not CAUSE C-diff, but Richard and I are symptom free, and you yourself said Richard's list is a bit too long for your tastes.
As far as Parkinson's, Citicoline ( CPD Choline ) appears to be the only proven-to-work supplement which when taken orally can benefit certain aspects of the disease, such as memory decline, based on real human studies, studies with placebo controls and peer reviews.
Effect of citicoline adjuvant therapy on mild cognitive impairment in Parkinson’s disease
(2016)
81 PD patients including placebo group
"Citicoline, as an important neuroprotective agent and membrane stabilizer, can delay the progression of cognitive impairment in PD-MCI patients; "
Citicoline in the treatment of Parkinson's disease.
85 PD Patients (2 groups)
"It is concluded that the levodopa-saving effect of citicoline could be used to decrease the incidence of side effects and retard the loss of efficacy of levodopa in long-term treatment."
I'm not very confident that we are close to the single wonder molecule that can cure or even delay all the neurodegenerative diseases at once. Even though many of those diseases share similar characteristics, different gene mutations are involved.
There are many of promising therapeutic agents under research like NAC, Thiamine, PQQ, Nicotinamide, Glutathione, Inositol, Trehalose, EGCG, Fisetin, Baicalin and drugs like Nilotinib, Exanadite, but nothing definite yet despite all those studies. Unless the exact mechanism of each specific neurodegenerative disease and their causative gene mutations involved are well understood, we have to depend on the existing literature and the trial-and-error approach on what may work on us or not to possibly delay the progression. Possibly gene intervention drugs is the future.
I am updating my list of supps today and adding mannitol. I have ordered my first kilo of the powder and expect I will take it everyday for the rest of my life.
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Joe
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