It looks like TUDCA is one of two ingredients in a drug now being sold to treat ALS, under the brand name Relyvrio in the U.S. (but at an extortionate list price of $158,000 a year) and ALBRIOZA in Canada. Co-formulated sodium phenylbutyrate/taurursodiol (PB/TURSO). Approved by the FDA in Dec. 2022 and a few months earlier in Canada in 2022. Meanwhile, TUDCA is readily available OTC/online.
Has anyone been using Restore Gold or TUDCA, short or long term, with good effect?
I don't have any info on Tudca, but there was a trial on phenylbutyrate at the University of Colorado that, I think, was going really well and then they lost their grant.
I am a bit suspicious as phenylbutyrate was an orphan drug and the less trusting part of me thinks they stopped the trial so they could combine phenylbutyrate with something else to make it patentable.
What is AMX0035, and Why Is It Important for All of Us? healthunlocked.com/cure-par...
Thank you, Bolt, I see you research very extensively, you contribute greatly to this forum.
What I've read about TUDCA seems very compelling to me so far, from what I read about it from studies and anecdotally. I'm not sure if this article has been shared yet on this forum: scienceofparkinsons.com/201...
Tauroursodeoxycholic acid: a potential therapeutic tool in neurodegenerative diseases.
More research is being directed with Tudca and ALS but this is good info.
These are interesting, have they already been discussed here?
pubmed.ncbi.nlm.nih.gov/227... "Tauroursodeoxycholic Acid Prevents MPTP-Induced Dopaminergic Cell Death in a Mouse Model of Parkinson’s Disease"
ncbi.nlm.nih.gov/pmc/articl... "Tauroursodeoxycholic acid: more than just a neuroprotective bile conjugate"
I take TUDCA for its general neuroprotective effects as I age; I don't have PD but my sibling does (I don't carry the risky gene).
yes, my husband has been on restore gold for over 4 years now. He is doing really well at the moment and has been good for 6 months now. He also takes Hardys daily essential nutrients with added vitamers and some other supplements mainly extra vitamins and omega3 oils.
Thank you very much for sharing, LAJ12345, it's wonderful to hear good news that your husband is doing well. Do you mind me asking, how long after diagnosis did he start taking Restore Gold, how are the level of his symptoms nowadays compared to when he first started on it, and does it seem as if he's been able to slow down the rate at which he needs to increase his PD medication?
I am going to take a closer look at Hardy's, since you mention it.
Check the B6 on Hardy's I don't think it is P5P.
the one with added vitamers has a mix of b6. I’ve written to ask them about it and sent that paper to them that was posted the other day to see what they say. They have a team of scientists there who look into things. He has been on it over 4 years. My friends son has been on it (the plain one) since he was 7 as he had adhd and he is now 18. It is the only thing that helps him function. My son was displaying adhd symptoms the past 2 years and failing at school and has been taking it now from the beginning of the year. He is now able to do school work and is 3/4 through the year at uni getting excellent grades considering he basically missed 2 years school work.
Hardys has over 15 years clinical trial data which shows it’s effective.
We find it works well. That’s what makes me wonder if it is the administering b6 without a balance of other nutrients that cause the side effects. Or perhaps some people are affected more than others.
He had severe lack of energy, apathy, depression, anxiety 5 years ago when diagnosed and had been on SSRIs and mirtazapine for depression. The SSRIs made him suicidal and the mirtazapine made him so sleepy and dulled down mentally he wouldn’t get up or do anything and could barely walk around the block.
I got him off those medication slowly weaning him and started him on Hardys which after 3 days made a noticeable effect to his mood. Then restore gold.
His other symptoms at diagnosis were severe rosacea that he had been on continuous doxycycline for year for. He couldn’t smell, had a fixed mask face, smelt of PD (that musty smell). He had erectile disfunction, and urinary urgency. He had rigidity and slowness and mild tremor and his hands stopped working. He was overweight and had a distended belly.
. On diagnosis I implemented a strict diet eliminating sugar and gluten and seed oils and anything with additives with vegetarian/vegan alternating every second day with meat or fish and we have most stuck to that pretty religiously. We also began walking every day but at first he struggled to get far and was difficult to get moving.
After about 6 months he had lost 20kg weight. His hands and rigidity were annoying him so he decided to try sinemet and he has had severe ups and downs on the madopar as he seems to be only able to take a very small dose before becoming suicidal and agitated in the evenings, constipated and insomniac.
He added 1/2 dose entacapone with the madopar now and that seems to be successful.
Symptoms that have resolved are his mask face, PD odour is gone. Sense of smell has partially returned. Depression, anxiety, apathy has gone and he has plenty of energy. He is organising holidays, going to bridge 4 times per week. Walking 1 1/2 hours per day and doing household chores again. He sleeps well and wants to do things like take the dog to the beach and go to movies although sometimes he has a panic attack eg in movie theatre if there are too many people, and he gets a bit impatient eg in restaurant if he has to wait too long and will start pacing. He is working on his OCD and trying to be a bit more patient and make small talk with people. He has a tendency when sitting chatting to someone to suddenly walk off mid conversation.
He still has rigid back, and hands still don’t work any better, erectile function and urinary urge still a problem. These have stayed about the same and medication doesn’t seem to have helped them. Tremor occurs if he is excited or worried about something and if medication wears off. Now he takes madopar 50/12.5 it is hard to compare before and after as when drug wears off he comes to a stop.
So the movement type things haven’t resolved but all the other mood and bodily disfunction has resolved.
He takes supplements in photo and fish oil with high epa. So I don’t know what has helped but he is living a much better and happier life than he was when first diagnosed.
Wow thank you for sharing all you researched for your HWP. Digestive enzymes have helped my husband. We are taking many of the same supplements. Take additional supplements for nerve pain, having surgery soon as nerve is compressed. We are taking a supplement for prostate health Prostate shield gummies (he is getting tired of pills). L'Arginine good for erectile dsyfunction.
naturalmedicines.therapeuti...
mm that sounds worth trying. It’s his saddest symptom at the moment.
He has had digestive enzymes before for a while. I struggle to get him to remember to take them but I feel his digestion is working better now as his rosacea and odour and acne has been gone for ages.
(“Conclusions: Different prostaglandins significantly alter the metabolism of arginine. Prostaglandins from omega-6 fatty acids increases arginase I expression. By decreasing arginase I expression, prostaglandins from omega-3 fatty acids may increase available arginine. The specific combinations of dietary fatty acids and arginine should be considered when tailoring dietary regimens.” so avoid seed oils and take omega 3 if you want to preserve arginine” )
I truly appreciate you sharing your hard-earned knowledge, the context, and this protocol! The photo of supplements is very helpful too. I am struck by the gains made, and the fact your husband is living such a full life seems quite remarkable to me. I can appreciate the kind of unwavering and earnest effort you must be dedicating to your husband's care ... you have been his best doctor and advocate, so to speak.
How fascinating to hear that the Hardy's nutrients have had such a positive and pronounced impact on your husband, son, and your son's friend.
(In my case, based on a genetic test, I may need to supplement with individual vitamins that are non-methylated, and avoid the tocopherol form of Vitamin E. But I'm noting the kinds of ingredients in the formula.)
As you mention that the back rigidity continues, perhaps the Shakti mat (original brand, and the advanced version, which is extra sharp) might possibly be of some help in easing tension. It has likely been mentioned on this board.
I'm just curious what supplement might be in the Dr. Mercola bottle in the photo? I'm not able to see clearly.
Many thanks!
Regards,
Kathy
That is liposomal vitamin c 1000mg.
I will look into the mat you mention. I do wonder if the rigidity in his back is due to his lack of movement of his shoulders and neck forming a rigid sheet of fascia which potentially could be causing the problems with his hands or trapped nerves.
I myself have had issues with weird feelings in the back of my head which have now almost completely resolved with stretching neck, face, tongue then moving down my body over time to side, hips and feet with tissue releasing as I work on it. It makes sense to me why qigong works now as I can feel the strings of fibres release as I instinctively do qigong type movements trying to free up frozen joints and get them back into their natural range of movements.
I think long periods of bending over iPad caused my issues. It is hard to know which of my husbands issues are structural in nature and which are chemical. Others are emotional I think with stress making them worse.
His gene test also came back with avoid methylated vitamins but he had been already taking the Hardys for some time when he had that test done and he had a good response to them so I am not sure if it always applies.
His worst period so far has been when they changed his meds and overdosed him. At that point he was so completely disabled he couldn’t get onto his bed by himself or even toilet himself I had to hold it for him. 😢. I think the entacapone has been helpful. He apparently has a fast dopamine beta hydroxylase which the gene report says leads to “bad outcome” so I think the entacapone although not slowing that down is a COMT inhibitor so might help by slowing other pathways to offset the fastness of this one. Anyway he has been very good and relaxed for 6 months now, the longest good period in his 5 years since diagnosis. At the start he would come down with fluey symptoms cycling every 4-5 weeks. I think our diet has rebuilt his micro biome and got rid of some bad stuff too and he no longer gets the fluey thing and has lots of energy.
Thank you very much, these further details are interesting, including the genetic test and your husband's tolerance of the Hardy vitamins despite methylation.
If you do choose to go with a Shakti mat, you can roll a towel under the neck and place the mat so it also goes under the neck, it hits the neck/shoulder muscles too. I have the Shakti mat and it quickly loosens tense muscles, helps with tension headaches, and brings so much blood circulation to the back. It can be used on legs too.
To your point about structural issues, joints, and qi gong, it reminds me of why exercise like qi gong is so key for those with PD, as an isometric exercise. Isometrics -- i.e., exercise to maintain joint strength and stability -- help ward off frailty (frailty being one of the leading factors in all-cause mortality) in a way that aerobic exercise (everyday walking, etc.) doesn't.
A longevity expert (Peter Attia) really emphasizes the need for isometric exercise for joint strength/stability, etc., including in his own exercise regime, to ward off frailty as one naturally ages. I'm not able to do justice to what he said, but it was convincing. This is a curious article of a man who lived extremely long (250 years [!] and verified by government records and the NYT): isometric-training.com/Isom...
I recently took a yoga class (Angamardana) that's said to be a total fitness program one can do at home (even weightlifters find it challenging and they're amazed at how it improves their endurance/flexibility), and it really targets the joints, fascia, etc. But it's very strenuous, and qi gong is more gentle yet very effective.
Thanks that is so interesting. Of course in ancient biblical times they were said to live for centuries too. Perhaps they had lifestyle practices or diets that got lost in time. Btw how do you sit like a turtle?😅
** Ok, looked it up.. eek haven't been able to do that since I was 15.
sit like a turtle
youtube.com/watch?v=Mk44bBa...
Walk like a pigeon
youtube.com/watch?v=IFDiiX2...
not sure how to sleep like a dog.
LOL, I like how you attach the video demonstrations. 😂Good guess. I didn't pay as much attention to the quote, but now that you mention it, I first thought child's pose for turtle. But it looks like it's a Confucian saying. Sit like a turtle is to be grounded, still, and quiet of mind (unperturbed), while walk swiftly like a pigeon (I was more perplexed by this one, as pigeons don't walk that fast) is better interpreted as walk spritely.
ah, I can do that! But are you sure. I thought part of his practice was qigong type movements?
Yes, you're very right that he did qi gong, though I'm pretty sure the quote is meant figuratively, not literally. I came upon a link (below) with more details. monmouthspine.com/Articles/...
He did Eight Brocades, which is a classic qi gong routine. The link includes resources for that. The article also lists key herbs he took, as well as a recipe for Spring Wine for male libido (one would need to go to a TCM practitioner for that, given the ingredients!).
If you're interested in qi gong, you could attend in-person or online membership classes or watch a video (available on Amazon) such as this, with explanations from an expert: amazon.com/Simple-Qigong-He...
There's also "medical qi gong," and that is great. A friend told me that one person who was a cancer survivor was grey in complexion but she started to glow after starting this. I took some classes in this and it was very simple and easy to follow.
Among the key herbs Li Ching Yuen took were wolfberry, panax ginseng, fo-ti (I would be wary of fo-ti, though, it can be toxic to liver). ... I'd taken wolfberry in the past, very safe, and it really helped me at the time. But now I'm avoiding nightshades, I can get achy joints, but it may be fine for others.
Thanks! Very useful. I wondered what his herbs were.
I feel like the qi they talk about is actually lymph fluid. And I wonder if it is blockages in lymph flow that cause the alphasynuclean to clump if the fluids aren’t carrying away the waste products in the brain . And the equivalent problem with Alzheimer’s. Interesting that lots of pd people have had knee and hip surgery. I wonder if scar tissues causes flow issues too. It’s interesting for sure.
I'm not sure exactly what qi is, but lymph is part of it. Your thinking is right, scar tissue does affect qi, they say. There's a proteolytic enzyme called serrapeptase that dissolves scar tissue if taken without food. I've taken it in the past to prevent permanent scars and for internal cysts, it really works. It can work for scars from injuries and surgery too. But it can cause pneumonitis in the elderly. Bromelain is another enzyme that works like that, but not as powerful so likely safer.
More info on Tudca, the only thing that makes me think twice about supplementing is possible side effect of muscle pain.
Haven’t seen the obligatory SoPD link yet: scienceofparkinsons.com/201...
I tried Restore Gold for a bit but didn’t believe it was helping much so moved on to other things. RG was a pain to get hold of (in UK) and was held up in customs/overcharged by customs at least once from what I remember.
Also UDCA trial here: cureparkinsons.org.uk/2023/...
Thank you for sharing your experience with Restore Gold, and for the links. Yes, the SoPD link is a great summary.
Clicking into the UDCA PD trial, it looks like they used high doses with good safety profile for about a year…seems interesting:
“Treatment with either UDCA or placebo was commenced at a dose of 250 mg per day and increased by 250 mg every 3 days until the target weight-dependant dose of 30 mg/kg was achieved.”
So if you weigh 100kg, the dose would be 3 grams. Study participants complained about having to swallow so many pills every day.
Not sure how different TUDCA and UDCA are.
TUDCA (UDCA conjugated with taurine) is said to be more bioavailable than UDCA.
supplements.selfdecode.com/...
maybe it is helping get rid of that pd smell if fats are being digested better.
Has any heard of using a stationary bike to help in slowing down PD ?
Safety and Efficacy of TUDCA as add-on Treatment in Patients Affected by ALS TrialA Wise Person Told Me to Not Forget About TUDCA
Have you been cured using the "Recipe for Recovery" by Howard Shifke
Has anyone tried using a laser walker or cane? 
