#431

I think reducing acidity generally is useful. Randox do pH measurements of urine.

#432

So sorry to hear about your diagnosis at such a young age. 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!

You have my heartfelt best wishes.

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#433

Thanks :pray: Even though I’m doing a lot and I believe that these interventions work (some of my symptoms are better today than 3y ago), I’m slowly coming to accept that, unless a magical cure comes, it’s a battle that one cannot win… That being said, I think a magical cure is possible:

  • Bemdaneprocel stem cells are entering phase 3. Results in 2 years. If positive it would mean stem cell therapy available in 2027. I’m not sure it would stop the decline but it could “reset” the brain cells to their pre-disease state and gain a few years (or decades?) while waiting for a treatment that stops the neurodegenerative process.
  • Multi-arm multi-stage trials are starting in France, the UK, Australia and the US so they’ll more compounds quicker. I’m sure they’ll find something that can slow down by at least 10% per year the decline. 10% less decline isn’t much but if it compounds over time and if you combine it with stem cell therapy you’re sorted I think.
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#434

Yeah, Antoine, this sucks. I read your diagnosis announcement and it was a gut punch. I really wasn’t expecting it, you are a good researcher and I believe if anyone, you can pull off a victory here. I’ll try to focus more on PD in the course of my habitual PubMed reading. And yes, hypoxia looks good, we’ve had hints of this since the original smoking connection - I think this is productive directionally, if we also explore the possible mechanism; why does hypoxia work in PD - if we can start to understand that, we might be able to address the same cascade through other means than oxygen deprivation.

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#435

By coincidence, I was looking into riboflavin for brain health, so I may as well throw this one out (caveat, Saudi Arabia):

Riboflavin Has Neuroprotective Potential: Focus on Parkinson’s Disease and Migraine

It’s not some great revelation, just a generalized review, but perhaps worth giving riboflavin a look.

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#436

Thanks a lot.

Yes, if we understand why hypoxia works, then we might create “hypoxia-in-a-pill” as this Harvard team did last month: JCI - Therapeutic hypoxia for mitochondrial disease via enhancement of hemoglobin affinity and inhibition of HIF-2α

I looked at riboflavin (see this thread: Riboflavin and Neurocognitive Decline ). I tried it a bit and saw no improvements (I actually felt a bit unwell). I then tested my serum riboflavin: perfectly normal. So I gave up on riboflavin until there’s more evidence…

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#437

Sorry, I didn’t see that thread, thanks. If ribo doesn’t work for you, no sense in hammering it. But before I let go of ribo, I thought I’d throw in this red meat factor (I don’t know your diet!):

High doses of riboflavin and the elimination of dietary red meat promote the recovery of some motor functions in Parkinson’s disease patients

OK, no more about riboflavin!

#438

Yes but the evidence is a bit weak looking at other papers:

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#439

I think PD and Aging are both driven by aspects of mitochondrial deterioration.

Chronic Hypoxia I think reduces the rate at which mitochondria deteriorate. The body has systems to improve mitochondria hence if you can hold back the deterioration then the body can improve mitochondria.

Varying pO2 by a reduction stimulates HIF 1 alpha which acts to improve mitochondria.

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#440

@adssx That’s bad luck for sure. You might have PD but it doesn’t have you.

I know you are not a fan of blood donation but look into iron and PD. Here’s review paper.

I look forward to learning what you find helpful.

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#441

Thanks, yes iron metabolism is dysfunctional in PD. I looked at it and it’s very complex:

:exploding_head:

So people are looking at more subtle ways to fix that. The most promising interventions are:

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#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.