#442

What do you think of the top impactful items indicated in the 10 years MVP summary report?
For instance Ginkgo biloba, NAD+, 5-MTHF, etc.?
Plots from that reports here

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#443

Yes, I follow everything Laurie Mischley publishes. This comes from her 2023 paper: Parkinson Symptom Severity and Use of Nutraceuticals

It’s a survey so a weak level of evidence. Still, if there’s strong signal I think it can show something. So the only interventions with the lower bound of the CI < -100 (what I think is a strong signal) are ginkgo biloba, oral glutathione, Q10, and curcumin/turmeric. Low-dose lithium and NAD+ are close to that and I suspect outcomes depend on the form and dose so maybe if the survey had “Lithium orotate” and “High dose NR” those would show better results. Among the strong signals (+ those you mentioned):

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#444

Oh, good idea. Actually, I’m going to order a small amount from apollo scientific and compare the properties. Thx.

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#445

@adssx If anyone can beat this, it’s you.

I know I will learn a lot about Parkinson’s while you do :muscle:

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#446

Apologies for posting a study that has been posted before, I wish the software alerts when posting links were more reliable telling us when it’s a double.

Anyhow, now I’m afraid to post links in case it’s already been posted :sob: - I went through this entire thread, and I hope I have not missed the paper below… though there are other papers scattered throughout the site, so it may still fail.

It’s a review type paper, but what’s useful in these is often the citations and being alerted to other papers and studies that we may have missed. So for this reason alone I think there is some value.

Recent Advances in Drug Therapy for Parkinson’s Disease

Some other thoughts - PD is a heterogeneous disease, so it’s likely that there are many classes of PD patients, falling into distinct pathologies. It seems pretty important to identify your particular case, because based on that you can start devising treatments, instead of randomly trying everything. Example: B2 vitamin superdoses don’t work for you, you don’t have a deficiency in absorption or insufficient intake. So you must look elsewhere - but where? Best way to determine that is to figure out what your specific case of PD is. To begin with, I think it would be useful - you are probably already doing this? - to do an excel spread with all your symptoms in great detail and everything you have tried. All of your biomarkers and test results in great detail. Even a very small detail might provide a clue as to what is the most fruitful potential treatment - even small things like: are you becoming more risk averse? Do you hate gambling? That could provide a clue about progression. Everything should go into the database with dates, so you can query it at any moment and cross reference - maybe even using AI, that way you could find novel correlations, this could be super informative. I realize this is a ton of work, but once you establish such a database, it will be easier to update it and keep it current.

Separately, you might want to keep a database of all the papers you have looked at relevant to PD, even tangentially. I know I could benefit from something like this, because often I lose a paper and then can’t find it. But in your case, it could be valuable as a handy reference - funny thing is, talking to researchers, it has happened more than once that even some scientist in their narrow field is not aware of all the papers that are relevant! Anyhow, it could be a good resource when talking to specialists in the PD field, something that you can bounce off of.

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#447

I bring recommendations from sources you probably won’t see:

So they say Parkinson’s comes from copper deficiency. Copper controls Iron through ceruloplasmin. Make sure you have enough copper.

Also they say to use Niacin to improve NAD:

https://orthomolecular.org/resources/omns/v20n04.shtml

They also say the exercise is essential. You need to do it like you mean it.

This is from the alternative community, orthomolecular medicine. Vitamins and minerals as medicine. Maybe crazy but I read them with any problem I have because of the safety and low cost.

Good Luck,

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#448

@56:05 of the video might be of some help, it’s 5+ minutes long. Mentions caffeine and nicotine products, and vit b3. Not sure how up to date the video is being from 2001.

So you might want to drink more coffee, or try caffeine tablets.
Perhaps look into nicotine products.
Even though wikipedia mentions anticholinergics for parkinson’s medicine class, it also mentions in the page for other drugs is cholinesterase inhibitors. Also mentions various serotonin/dopamine/noradrenaline reuptake inhibitors.

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#449

Thanks @LukeMV :pray:

@CronosTempi: thanks for the link. Yes, the heterogeneity of this condition is a challenge. I’m trying to take notes but symptoms vary during the day and from one day or week to another. Symptom X can improve while symptom Y gets worse. It’s hard to identify patterns. (That’s what Laurie Mischley is trying to do with her database of patients). And yes, I have dozens (hundreds?) of notes on Notion with papers. And I post the best ones here as well :wink:

@Bicep: thanks. I think Laurie Mischley had a thesis around Copper (or was it Cobalt?) so I tried them both: perfectly normal/optimal levels (in hair though, I might do a serum test). Wilson’s disease (excess copper) can be misdiagnosed as Parkinson’s disease so many people with PD get tested for copper and ceruloplasmin: it’s therefore unlikely that copper levels are related to PD. Regarding NAD: yes there’s something but RCTs aren’t clear yet whether supplementation with precursors (NR, NMN, niacin, etc.) helps or not. New RCT results soon…

@Ambient: old video indeed, now outdated. Coffee helps up to a certain point: Dietary Caffeine and Brain Dopaminergic Function in Parkinson Disease 2024:

  • “Chronic caffeine intake prompts compensatory and cumulative dopamine transporter downregulation, consistent with caffeine’s reported risk reduction in Parkinson disease. However, this decline does not manifest in symptom changes.”
  • “In one controlled randomized trial of PD patients undergoing 6–18 months of treatment with caffeine, there was no clinical improvement, but there was increased dyskinesia, leading to the conclusion that caffeine cannot be recommended as symptomatic therapy for parkinsonism.”
  • “Although our findings strongly suggest reduced DAT binding in PD patients with high caffeine intake, the loss of DAT binding itself may not be harmful. Studies on other psychostimulants indicate that decreases in DAT binding following chronic exposure are transient and do not imply permanent neuronal loss. However, these transient changes in DAT have been observed primarily in healthy individuals or those without specific functional loss in the dopaminergic system. Considering the progressive decline in DAT binding in our study, along with the lack of beneficial clinical symptomatic effect or potential exacerbation of dyskinesia associated with caffeine consumption, our results do not support advocating caffeine treatment or increased coffee intake for newly diagnosed PD patients. Instead, a cautious approach to caffeine-based treatment may be warranted due to the progressive deficit in DAT, regardless of the possible underlying downregulatory mechanisms.”

So I take one cup a day (in the above paper they defined “High Coffee Consumers" as ">3 cups/day”, with an average of 5 cups/day in this group).

Nicotine: definitely not. See: Parkinson's disease - #77 by adssx

B3: as I said above, it’s promising but potentially risky. Everyone is waiting for the phase 3 results expected this year… Let’s hope :pray:

Then all the drugs you cited are unfortunately symptomatic treatments: they don’t slow down the neurodegenerative process (they might even make it worse!).

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#450

I’m looking but I need to find more info, like a CAS number or a peptide sequence.

#451

DA5-CH is also called KP405. It’s a proprietary compound, and I think that on purpose, they didn’t release much information about it. There’s an ongoing Phase 1 trial in PD. They developed it specifically to cross the blood-brain barrier, and it showed protective effects in animal models of PD. I can’t find much more information…

#452

:slight_smile: found it
The DA5-CH peptide aa sequence is YXEGTFTSDYSIYLDKQAAXEFVNWLLAGGPSSGAPPPSKRRQRRKKRGY-NH2 (X = aminoisobutyric acid)
(Feng et al., 2018).

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#453

I hope the diagnosis is incorrect. I’d look at the same protocol as I have for ApoE4’s to mitigate that I just put up.

This is an unacceptable situation to have such a wonderful individual having disease at 32 years of age.

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#454

Got three opinions, so at this stage, I’m afraid it’s correct… But thanks for your support :pray:

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#455

That is unacceptable. Life is a bitch sometimes. I’m sorry. Michael J Fox has gone along for a long time … but he is 30 years ahead of you. I genuinely hope the things we know right now pan out and benefit you, and more things to come mitigate disease.

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#456

PD cases differ amongst themselves pretty substantially. Hopefully, Antoine’s is milder and more treatable. It’s a question of hanging on, because new treatments and new research results are coming out every year. Even trying to pin down the etiology is hard. Pesticides might be one cause, then there are studies claiming that is not true. I even remember some thirty years ago, there was a rash of PD cases in young people in Los Angeles - transpired, they were taking some synthetic street drug, that was destroying the substantia nigra, resulting in PD-like symptoms. I suspect treatment should be individualized depending on each case presentation and etiology, but we are not there yet. Reading through pubmed papers I can see how overwhelming it is trying to get a good handle on this disease, PD is incredibly complex.

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#457

In the spirit of throwing things against the wall….

A few years ago I saw something about Valter Longo’s fasting mimicking diet and neurodegenerative diseases, including Parkinson’s.

I just looked at perplexity and saw this (pasted below). I wonder if it would be worthwhile trying to contact Longo? (Probably a waste of time to talk to anyone at Prolon)

I know you can have a meeting with him through his Create Cures Foundation in CA, for a price. I talked to them once and it’s mostly about giving you nutrition advice, and for more and more money, you get extra perks, and at the top, you get access to him. I ultimately didn’t do it because I’ve never met a nutritionist who could teach me anything, but I wonder if there is a way to bypass all the noise to get to him? He also has something in Italy, and perhaps you can more easily get access to him there? I’ve always thought if I did get a bad diagnosis, he’d be an early call of mine. And keep in mind, my knowledge base on all this stuff is very limited and this might not be helpful!!!

True North in CA also does some magical things, but those are super long fasts and I have no idea if they can help with Parkinson’s. I watched a special on it after learning Longo was doing some studies with them and was shocked by the stories.

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#458

I tried short and long periods of fasting. Didn’t see much improvements. There’s not much data for it: https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd230264

I try to have early & light dinner though, as I sleep better when sticking to that, so in practice I do “time-restricted eating”.

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#459

If we are not out to dinner with others, I usually have dinner by 3pm! It significantly helps my sleep too.

I needed to eat late recently and didn’t drink, yet my oura stats made it look like I was having wine with dinner.

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#460

Life isn’t fair. I’m truly sorry to hear this news

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#461

What a horrible, shocking news. I’m so sorry to hear this :slightly_frowning_face:. As others have expressed, hopefully you will have a (much) milder form of PD, and hopefully research will progress fast. I’m hoping for the best for you. And I definitely agree with what DeStrider said:

You are a brilliant young man and you are taking positive steps to slow or halt the progression of the disease. I wish you the best in your battle. If anyone can find a way to halt or overcome it, I believe that you can!

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