Supplements, nootropics, vitamins, herbs:... - Cure Parkinson's

Cure Parkinson's

19,551 members20,559 posts

Supplements, nootropics, vitamins, herbs: how do they interact? which are not compatible, which work synergistically and timing?

Sept. 7, 2021: I’m adding this preface. Thank you for your responses! I did not anticipate this! Please do not have expectations of my efforts culminating in anything that is not very basic, already known by most people on this forum, or more than what is easily accessible on the internet. I use the term “report” the way a teacher would not a researcher. I’m wholly unqualified but am very curious and just want to learn. Thank you!

I am embarking on researching all of the supplements listed below and will be writing a report to the best of my laymen ability on each. Then I need to research which supplements, nootropics, vitamins, and herbs work well together and conversely what combinations should be avoided. I also intend on researching optimum timing and bioavailability. An example being that curcumin has extremely poor bioavailability which is improved greatly (David Sinclair) when taken with a fat whereas B vitamins bring water soluble I believe should be taken between meals. The complexity goes on and on and creates quite a tangle.

I am asking for help!

If anyone has information or resources on interactions to help me embark on this, please share. I will file every tidbit I receive. I want to avoid reinventing the wheel. This is going to be a lot of research but I believe it will be valuable. Hearing opinions that are pulled out of the air confuses me so please provide some reasoning or sources.

I should first at least be able to categorize what I’m going to research. Any help with that, how to categorize, would be excellent. Please help!

For now, a list:

B1 thiamin

B2 Riboflavin

Niacin

B6

Folate

B12

Biotin

D3

Vitamin C

K2

NAC N-Acetyl L Cysteine or N-Acetyl Cysteine

Magnesium (many forms: magnesium carbonate, magnesium L-threonate, etc)

CDP Choline / Citicoline

TUDCA

Ubiquinol (Reduced form of Co-Q10)

Lithium Orotate

Acetyl L-Carnitine

Silymarin (milk thistle)

Zinc / L-Methionine Sulfate

Vinpocetine

Sulforaphane (supplements such as Brocco Max and broccoli sprouts)

Turmeric / curcumin

Mannitol

Xylitol

Ashwaganda

Lions Mane

Ceylon Cinnamon

Cocao

Marine Collagen & collagen peptides

Melatonin

Taurine

L-theanine

Potassium Iodide / Potassium Chloride

Berberine

Quercitin

NMN

Trans-Resveratrol

I feel better now than 6 months ago and I owe that to what I have learned from the researchers and experienced PWP on this forum. Thank you to those who endeavor to help us help ourselves!

135 Replies

wow that's something i've considered but never quite had the courage to undertake! i will check my functional doc's notes on the supps she's prescribed, check them out re; research if i can find any, and pass it along. may take a while, yesterday i had my first serious "PD fall" while out walking and fractured shoulder was the result! so one handed at the moment and for the next few weeks at least.

in reply to rebtar

I’m so sorry to hear about your fall and injury! I’m going to start using a cane early bc I fear falling so much. I really appreciate your help with my undertaking this!

I bet Laurie Mischley discusses interactions. I hope she does anyways.

rebtar profile image
rebtar in reply to

I've never heard her discuss them. and actually she doesn't prescriba a lot of supplements.

PixelPaul profile image
PixelPaul in reply to rebtar

Dr. Mischley does prescribe some supplements, but only to address known deficiencies. She does not believe in taking unproven supplements in hopes they might be of some benefit.

in reply to PixelPaul

Do you have a list of what she prescribed based on deficiencies? I know she recommends omega 3 and lithium orotate.

PixelPaul profile image
PixelPaul in reply to

I can only speak to what she has recommended for me, which is based upon blood labs and hair test: fish oil, lithium, glutathione, vitamin D and vitamin B12.

Despe profile image
Despe in reply to PixelPaul

Exactly the same that she recommended to my husband.

crimsonclover profile image
crimsonclover in reply to Despe

Despe, PixelPaul, Missy0202 Does she do anything to address gut biome? Or speak as though that is an issue to be addressed (as if it is of importance)? So far I've only heard her speak about lab tests to correct deficiencies, and things she has noticed from her ProPD project.

edit: although she has mentioned gut biome in passing, but not like she is doing anything to correct it other than advising a varied diet.

She does believe that the gut biome plays a role in PD, but she has indicated that not enough information is available at this time for her to recommend any supplements to address this issue. I believe there is a video on her PD School course where she discusses this.

Thank you, and thank you for the lead to her video.

Despe profile image
Despe in reply to crimsonclover

No, that I am aware of. She addresses anomalies based on hair and blood tests.

Missy0202 profile image
Missy0202 in reply to PixelPaul

She recommended the same for me, minus the lithium

laglag profile image
laglag in reply to

This may seem like a silly question and I'm going to ask it anyway. This is for anybody not just cc... Has anyone ever come up with a list of supplements , herbs, things that PwP 's are usually deficient in (similar to CC's list) and used it as a panel of items to test (hair and/ or blood) as many PwP's as possible for dificiencies. I imagine it would be time consuming as well as expensive but so are all the trials going on. For example, most PwP's are deficient in D3. They may be deficient in their kidneys or? also. My internist tests my blood for a few certain "standard" things, so I would think there would be one specifically for PwP's. Let me know if I'm "out in left field".

PixelPaul profile image
PixelPaul in reply to laglag

Not a silly question. I’m a patient of Dr. Mischley, and she has a standard blood panel of things she tests for. I did not specifically ask, but I would assume the things being tested for would be things that are commonly deficient in PwP.

laglag profile image
laglag in reply to PixelPaul

Yes, I took her summer class last year and she did mention something like that but it was just about five or six things. I'm thinking more like 25 or 30 or more that seem to be involved in PD. Make it a standard thing for everyone that's diagnosed Parkinson's, either newly diagnosed or someone already diagnosed. Thanks for your reply.

crimsonclover profile image
crimsonclover in reply to laglag

From Dr. Mischley's website:

The Parkinson’s Disease Panel is made up of 16 tests:

HsCRP

Homocysteine

TSH

Standard Lipid Panel

HBA1c

Comprehensive Metabolic Panel

Ferritin

Iron and IBC

Vitamin B12

CBC with Auto Diff

Uric Acid

Vitamin D 25 OH

Omega Check

DHEA-S

F2 Isoprostanes

Methylmalonic Acid

She also does a hair test.

In the video linked below, she gave this list of supplements to slow progression -- said she has updated data that is better than what she published previously, but isn't going public with it as she doesn't want people self-dosing without the supervision of their physician:

- glutathione

- pharmaceutical Azilect (generic Rasagiline)

- CoQ10

- fish oil

youtu.be/DHylAb_OZRA?t=4366

laglag profile image
laglag in reply to crimsonclover

Thank you!

in reply to crimsonclover

Supplementing with glutathione which has terrible absorption instead of precursors? CoQ10 instead of Ubiquinol which has much better absorption?

Folate?

D3?

I heard her recommend Choline instead of Citicoline. And I’ve never heard her recommend Acetyl L- Carnitine which I believe is better for PD than Choline. (They work together)

Anyways, this combined with her lack of biome discussions and dietary misses leads me to undertake researching myself.

in reply to laglag

That’s the sort of thing I have in mind Laglag! I’m listening to a talk from the UC Davis ALZ institute and the professor says that for dementia and brain degeneration “sub optimal levels” of B vitamins can lead to dementia. I will post a link. Oxford professor has said similar

Astra7 profile image
Astra7 in reply to rebtar

I broke my foot last week after a fall at tennis, so am hobbling around in a moon boot.Did you freeze then fall? I cannot find anything to help me with this freezing/falling problem🙁.

Hope your shoulder is ok.

rebtar profile image
rebtar in reply to Astra7

i've never been aware of freezing, i don't think that's the problem. Seeing ortho surgeon tomorrow. i know it's a months long process but i'm hoping to avoid surgery.

GioCas profile image
GioCas in reply to rebtar

Hi Rebtar

Mi dispiace molto, ma non ti preoccupare se non ricordi il momento precedente la caduta perché è una cosa normale. Quando potrai tornare sul luogo della caduta i ricordi torneranno. 😜 Ti auguro una pronta e piena guarigione e un saluto dal lago di Como -Italia . Gio

Ma dello del Lario. Como lake
rebtar profile image
rebtar in reply to GioCas

beautiful

gginto profile image
gginto in reply to rebtar

Yes I would strongly suggest u do your own research. It's my experience that doctors just don't know much about all the different supplements out there..

rebtar profile image
rebtar in reply to gginto

my functional med doc does extensive research, which she shares with me if i ask...

Thank you for taking this on.... I have closely followed the advice of others rather than re-inventing the wheel.... so I look forward to seeing what this wonderful group comes up with.

Fantastic- I’ve been thinking it was so important to get the most of your supplementation and I’ve been losing my way of late

I’m using supplements from seeking health, Ben lynch. His research is extensive regarding individuals responses to supplements according to their genes

in reply to Manypony

I hadn’t heard of him. Thank you!

Laurie Michley recommends taking powdered vit C with l.dopa to get the most benefit from the medication

Should we just add them when we think of them?

in reply to Annieartist

Yes please! That would be great. Then over time I will create a post for each and update it as info trickles in.

laglag profile image
laglag in reply to

You are amazing cc!

in reply to laglag

No I’m not but I sure love being told I am anyways! ☺️ ❤️

PDsux_10 profile image
PDsux_10 in reply to Annieartist

Hi How much powered C does she recommend and how often,l? Do you add it to every dose of L Dopa?Thank you

Mel

Annieartist profile image
Annieartist in reply to PDsux_10

Let me replay the video and check - I do a level teaspoon with it when I do take it as I can’t stomach more

PDsux_10 profile image
PDsux_10 in reply to Annieartist

Ok great thank you. My husband take 1000mg tablet with his doses, just if powder is better I want to make sure I don't overdo it.Cheers

Mel

Annieartist profile image
Annieartist in reply to PDsux_10

Yes it’s 500mg in powder or 30 mg lemon juice - not in tablet form so I assume it needs to mix higher up the digestive track

You might want to double check the label and see how many mg you are taking. The one I am taking has 1,100mg in 1/4 teaspoon. Dr. Mischley recommends 500mg ascorbic acid powder OR 30ml lemon juice (see my post downthread for a link).

Magnesium- vitamin C- vitamin B1 & B6 warning dose level.

Copy as received:

Magnesium is also important as it is a catalyst to B1 , Some people will not get response if magnesium levels are not brought up. Reference the US National Library of medicine B1 and magnesium.

B1 Thiamine HCL is one form of B1 available on the market . Online and pharmacies ,B1 Thiamine HCL is non toxic in supplement even in high therapeutic doses by itself not in a complex. Well tolerated for the majority .According to current medical and history

Other B vitamins such as niacin and B 6 in a complex should not be given in a high dose as high doses of these do have warnings and side effects in supplement.

B1 Thiamine HCL is what the Great Neurologist doctor Antonio Constanti recommends to use for high dose therapeutic supplement .

An extremely brave Neurologist. Also kind.

Doctor Antonio Constantini points out that there is no medicine or drug that is able to effects all organs and systems of the body.

Where as all organs and systems function Thanks to B1 Thiamine . An important detail is that Thiamine therapy brings no collateral damage over time.

We are not saying the vitamin C is not important it is important for virus it is proven extremely beneficial . For virus with upper respiratory infection as well as for seniors . Both for treatment and prevention of virus and even in a small dose in supplement. Reference the NIH and vitamin C for seniors with upper respiratory infection . Also NIH vitamin C and virus .

But for sepsis .

Which is what is the major cause of serious complications and death from flu, virus and Corona virus ,infection and trauma, and much more. any critical illness according to all modern science , heart failure .

They are clear it is the B1 that is what is halting and reversing the metabolic and immune dysfunction, the storm and heart failure , multiple organ failure the massive inflammation and the low oxygen to the brain and all the other dangers such as renal failure which is kidney failure

. Also B1 is a catalyst for vitamin C. Also B1 is absolutely critical to halt virus and infection all by itself and effective even for TB. Having a severe virus or flu any infectious disease is actually is a big sign B1 levels are very low in the first place .

Doctor Mercola has a an article called B1 Thiamine is Critical for Fighting Infectious Disease/

Lew Rockwell .com has an article posted called the Alarming Reasons Why Some People Die From the Flu by Doctor Mercola that features Dr, Marik's work also a good cross post of a typical Allopathic telling you the warning signs for sepsis ,(which are identical to the serious aspects of Corona virus) and that you need the right antibiotic right away. Modern science says that you need therapeutic B1 right away so does all medical science historically for acute B1 deficiency which are those symptoms .

Vitamin B1 Thiamine deficiency drastically increases the susceptibility to infectious disease and internal infection.

This is all well documented and public knowledge . But you have to research it. They are not actively educating the public.

Or following professional protocol for treatment . If you become critically ill or your child or infant and you are in a hospital ANY AGE any critical illness . MAKE SURE YOU ASK for B1 Thiamine therapeutic dosing and get it . It is the first thing and the most critical thing B1 thiamine therapeutic doses. If you do not have access to a hospital and IV. Advanced medical Naturopathic specialists recommend three to eight grams of B1 by itself , this is 3000 to 8000 mg of B1 HCL For adults . generally comes in 50 to 500 mg capsule or tablet, capsule is better as the tablets taste awful. This is available online, health food stores and most pharmacies \

Naturopathic specialists recommend this for acute situations as well as some chronic diseases of B1 deficiency. We have repeatedly seen this get people out of heart failure . For adults daily . . The high dose is needed in case the patient is not getting activity . The high dose supplement Green Med Info explains causes a passive uptake and activity. I could only find a few reference for children for stressed situations one was by Doctor Lonsdale and it was one thousand milligrams for, I believe, the boy was a six year old.

GrandmaBug profile image
GrandmaBug in reply to RoyProp

Roy, I am in the process of finding the dosage I need of B1 HCL. I am slowly working my way up and and at 600/600 a day. so far so good. I also take a B complex and am wondering if I should stop based on your comments about B6 and niacin. I take Neuro Active 6. It includes:Thiamine mononitrate, 5mg....417% daily value

Riboflavin, 5mg....385%

Niacin as niacinamide, 20mg....125%

Vitamin B6 as pyridoxine HCL, 5mg....294%

Vitamin B12 as methylcobalamin, 500mcg....20,333%

Plus some other stuff, but basically want to run the B vitamins by you. What do you think? just find a Vitamin B12 by itself?

RoyProp profile image
RoyProp in reply to GrandmaBug

B12 alone. Maybe test blood for level

GrandmaBug profile image
GrandmaBug in reply to RoyProp

Thank you so much. Glad for your extensive post above. I'm still working to fine tune this B1 HCL. I've been at it a couple months, still working my way up. I'm not on any meds yet, just supplements, diet and exercise. Hoping maybe never to have to use meds if B1 can stop what small progression I have.

gginto profile image
gginto in reply to RoyProp

Hi Roy- Do you feel you are much better taking B1/Thiamine? Like would you say since you started taking it you feel you are: 10, 40, 70% improved? Have you definitely noticed certain pd symptoms have gone away/relieved? Thanks a lot, and keep well!

Hello, I try to run everything by the Natural Medicines professional data base mostly to check for interactions.

As an example the following is a restriction on magnesium:

LEVODOPA/CARBIDOPA (Sinemet)

Interaction Rating = Major Do not take this combination.

Severity = High • Occurrence = Probable • Level of Evidence = B

Magnesium can reduce the bioavailability of levodopa/carbidopa.

- Details

Clinical research in healthy volunteers shows that taking magnesium oxide 1000 mg with levodopa 100 mg/carbidopa 10 mg reduces the area under the curve (AUC) of levodopa by 35% and of carbidopa by 81%. In vitro and animal research shows that magnesium produces an alkaline environment in the digestive tract, which might lead to degradation and reduced bioavailability of levodopa/carbidopa (100265).

With this information I make sure I get a couple hours between when my HWP takes C/L and magnesium.

Fat soluable vitamins and supplements need to be taken with food with a little fat (A,D,E,curcumin, coq-10) etc. for maxium absorption.

NAC and Glutathione are difficult regarding absorption. Need to be preferrably lipsomal and on an empty stomach.

Another example from natural medicines DB is vinepocetine - it came with alot of warning and the FDA is investigating whether it should be sold over the counter. The only warning to date is pregnant women should not take it. However, it did have a warning on immunity and with Covid spiking that could be a concern: Vinpocetine has been associated with leukopenia in some patients. Vinpocetine should not be used by immunocompromised patients because it might increase the risk for opportunistic infections.

in reply to Sydney75

Natural medicines.therapeuticreseach.com?Is this the site you use?

Thank you!!

yes that is the website, I joined because I got nervous about supplement side effects and drug interactions. Very informative, although our neuro MD said some of the interactions are theoretical.

in reply to Sydney75

Much appreciated!

It’s a very similar list to what my husband is on except he takes all the vitamins and minerals in the Hardys extra vitamers DEN which is easier than managing all the orders and quantities of individual bottles. My method is to take everything with food spread over the day with L/C taken between to avoid interactions with that. That way compounds in the food might help absorption or at less stop it irritating your stomach or overwhelming good bacteria by dumping it in your intestines where gel cap happens to dissolve.

Mannitol is the exception which is dissolved in the coffee.

I notice you don’t take any omega3 oils. My hubby takes fish oil with high epa, krill and hemp oil. Ubiquinol and maybe some others needs oils but probably if you eat with food you would have eg olive oil in your meal?

in reply to LAJ12345

I take Omega 3. I forgot it. Thank you! And probiotics boot I’m putting that in with nutrition, a whole other report. Do you have suggestions of supplements to add to my research?

LAJ12345 profile image
LAJ12345 in reply to

Ambroxol is one people are trialing. Hubby is only taking 2x2 twice a day which is much less than the trials but he always overreacts to medications so I decided to go low and he is feeling great at the moment. (Not necessary the ambroxol of course).

He takes pantethine 600mg, rhodiola rosea 500mg, glutathione 500mgx2.

Restore gold is his other which has

tyrosine 1,600 mg

TUDCA (Tauroursodeoxycholic Acid) 1,200 mg

Grape Seed Extract 240 mg

Green Tea Leaf 400 mg

N-Acetyl Cysteine (NAC) 1,600 mg

Acetyl L-Carnitine 400 mg

Alpha Lipoic Acid (ALA) 400 mg

He did a 3 month course of toxaprevent which I think was helpful.

He also got off the final tiny amount of antidepressants he had been weaning off for 2 years. So getting off them helped I believe. Are you taking any?

Also the red light hat and apolloneuro are not supplements but I think are helpful. And one off costs which you don’t have to be shelling out for over and over.

crimsonclover profile image
crimsonclover in reply to

For nutrition report (I guess? Although it also affects levodopa availability):Dr. Laurie Mischley - 500mg ascorbic acid powder OR 30ml lemon juice to augment stomach acid. She says approx. 50% of PwP don't make enough HCl. youtu.be/DHylAb_OZRA?t=2332

eta: I'm doing this with meals for better digestion (not taking levodopa).

LAJ12345 profile image
LAJ12345 in reply to

Oh, I forgot citrus bioflavonoids.

I got the idea for rhodiola and bioflavonoids from the Energyblueprint products Energenesis and ultrabrain as they have man6 of the other things he is taking already

store.theenergyblueprint.co...

Butyric Acid

Cod Liver Oil

Fisetin

Inositol

Krill Oil

MSM - Methylsulfonylmethane

Propolis

Royal Jelly

Selenium

Vitamin E

I recently read a great article about the synergy between Vinpocetine and Gingko Beloba for brain health. It was a science type article so try googling it.

Good list at

greenmedinfo.com/disease/pa...

Also concerned about ways to measure the deficiency before supplementing as proof that it is required.

CC,

I just looked at your new post. I don’t see any “facts” as you have been expecting . All are personal experiences and some quotes from a naturopathic doctor. Being in this forum for over 4 years, I have seen people looking for approval than “fact”.

Hope you find what you are looking for.

crimsonclover profile image
crimsonclover in reply to Kia17

"...and some quotes from a naturopathic doctor."

With a link to the video where she cites her sources. Although, admittedly I do not recall a source for that particular one.

Enjoy recycling 4th hand information.

in reply to Kia17

“Just trying to be nice” doesn’t apply to this post?Have a super duper day! Don’t forget your common sense!

Kia17 profile image
Kia17 in reply to

Please say hello to “Fact” for me if you ever find it. Likewise have a great day.☺️

in reply to Kia17

Now that was a good one. “Fact” is elusive isn’t he. I will have to just hope for his cheaper cousin “Source.”

Despe profile image
Despe in reply to

I don't wish to be "the devil's lawyer," CC, but Kia is one of the most respected and knowledgeable members. Nothing is absolute, what may work for one, it may not work for the other. It is a personal and error/trial experience.

Kia17 profile image
Kia17 in reply to Despe

Hi Despe,Thank you for your kind words. Like you said nothing is absolute.

Despe profile image
Despe in reply to Kia17

:) It's all true! How are you doing, Kia? Hope all is more than good.

Kia17 profile image
Kia17 in reply to Despe

I am very well thank you. Hope you and family are keeping well.

in reply to Despe

Despe, I was referencing a different post where our exchange included her telling me to “use common sense” etc etc when I asked what she meant. I was warned to not mess up my mitochondria with mixing supplements and it scared me but “using common sense” was not helping. I know she knows a lot. I do not. But I’m trying.

Despe profile image
Despe in reply to

Long time ago, I believed Kia was a "she." It's a "he." :)

Farooqji profile image
Farooqji in reply to Despe

BTW by virtue of which thing you both misinterpreted his gender?

Kia17 profile image
Kia17 in reply to Farooqji

Good question.

Despe profile image
Despe in reply to Kia17

:) :)

Kia17 profile image
Kia17 in reply to Despe

Despe, we discussed this long ago. Don’t think about it.☺️

in reply to Kia17

I apologize Kia. I had a female friend named Kia so I wrongly assumed.

People on here assume I’m a retired grandma. I’m only 46.

Your statements “the worst mistake people make”. “Don’t mess with your mitochondria” “use common sense” scared the heck out of me. I know so very little but am really trying to learn.

Kia17 profile image
Kia17 in reply to

Don’t worry. No need to apologise . That’s fine with me. You are young and determined and surely you can find a solution.

I very much hope in finding a universal cure for Parkinson’s by the world scientific community as everyone has right to live fully.So we won’t see each other here and will then create another forum naming it “People Cured from PD”.😊

All the best

GioCas profile image
GioCas in reply to Kia17

CCL, KIA,

"I very much hope in finding a universal cure for Parkinson’s by the world scientific community as everyone has right to live fully.So we won’t see each other here and will then create another forum naming it “People Cured from PD"

I'm there too, I want to do it (the cure) by the end of next year: December 2022!

Gio

👍👍

Kia17 profile image
Kia17 in reply to GioCas

👏👏

Coconut Oil

Research Document

Document under FILES.

PARK . nouva.pdf

"Parkinson's disease"

Vitamin B1 use instructions :

Join my Facebook group Parkinson’s thiamine hcl m.facebook.com/groups/23226...

Great Idea! How did you come to the supplements on the list? There are some supplements/natural products that are not on this list that are evidence based and beneficial such as:

Gotu Kola, Grape Seed Extract, Wheat Grass, Blueberry, Acai, Rhodiola... I've added these , among others, and find they especially can relieve cognitive issues such as anxiety, sleepiness, focus, memory.

If you are open to other supplements along with your list you could have even more information that could be of benefit ..

This, along with regular EXERCISE (and other things) will boost our defence against pd..

We cannot expect drugs alone to do the trick.

Wow, thanks for taking this ginormous task on. The info will be extremely valuable. Thanks again

in reply to PalmSprings

Please do not have high expectations

Have fun 😉

I would be interested to know what you will accept as proof of effectiveness?Maybe follow the ethical pharmaceutical industry standards of double blind studies in at least five different locations ?

A fervent belief in something is not proof.

I do not take any vitamins or supplements, but I will, as soon as there is evidence of effectiveness.

Despe profile image
Despe in reply to condor39

". . .ethical pharmaceutical industry standards of double blind studies in at least five different locations ?"

Subject to interpretation. . .

There is rarely proof - as you well know. It's about research and knowledge accumulation, faith and hope. Without a need to demonstrate efficacy, then the goal is to master detailed information. Activity as a substitute for achievement. All of which is post-hoc review of other data because nobody is in a position to carry out any sort of meaningful trial. ParkBear and ccl's interpretation of a CoQ10 study, open label, with no placebo control for 7 patients over 10 months treating orthostatic hypertension (OH) was a recent example. They concluded that CoQ10 was an effective treatment for OH. The correct conclusion was drawn by the authors of the paper -vis "it merits further investigation"

But that investigation is rarely possible, and even more rarely achieved. And when it is, and it produces an answer which contradicts the faith - it is just conveniently ignored - as in the case of the phase 3 study of CoQ10 in PD. It quite clearly didn't work - but the likes of Perlmutter and Mischeley "feel it is helpful in their experience"

You can't beat a feeling in this game. And there is no point in trying. It's not about rigorous scientific proof. It's about trying something and feeling better for having done so.

in reply to WinnieThePoo

Well that sure is dismissive and insulting. The CoQ10 for OH is not only based on one small study. Your justifying eating sugar has no sound science either. Your reasoning is ridiculous actually and there is loads of information disproving your silly theory.

Best of luck sir.

WinnieThePoo profile image
WinnieThePoo in reply to

In human study with 7 participants. (Thank you Park Bear for sharing this.)

My conclusion of this report: CoQ10 can help with Orthostatic Hypotention

Your text - my emphasis

Despe profile image
Despe in reply to WinnieThePoo

Do you think that a Mayo MDS mentioned COQ10 to us based on your claim?? Come on, WTP, your scientific mind won't let you see beyond your nose. :)

WinnieThePoo profile image
WinnieThePoo in reply to Despe

Well, nobody has mentioned the conclusive published research they based their advice on. It's harmless (other than to your wallet. I expect your MDS has a feeling about it

WinnieThePoo profile image
WinnieThePoo in reply to

Your justifying eating sugar has no sound science either. Your reasoning is ridiculous actually and there is loads of information disproving your silly theory

The standard response - name one

(edit - my understanding of how mammals are designed to run on carbohydrates makes the fairly obvious point that mother nature could have designed milk to be oils & fats, protein, trace elements and water ONLY if she had wanted to. She custom builds milk for different species, and its not hard to leave carbs out.

But it was further explanations from David Frape of Cambridge too - although horses are his specialist subject he designed the dog and cat food we made at Oscars, and gave me a lot of useful insights and explanations)

WinnieThePoo profile image
WinnieThePoo in reply to

Your justifying eating sugar has no sound science either. Your reasoning is ridiculous actually and there is loads of information disproving your silly theory

C6H12O6 + 6O2 -> 6CO2 + 6H2O + ATP

😉

in reply to WinnieThePoo

Go enjoy your modern day farmed fruit especially daily and year round. ☺️ Just like we evolved to! Yep. ☺️

WinnieThePoo profile image
WinnieThePoo in reply to

I apologise - I wasn't playing fair giving you just the formula. The formula was for cellular respiration. To work, cells need to produce energy (all that mitochondria and fuel cell stuff) and to do that our cells need glucose. Sorry - basic fact of life

We don't need to ingest glucose in Haribo , Hagen Daas, or Mojito's - indeed we don't absolutely NEED to ingest any form of carbohydrate (although even cats do) - but we do need to make glucose from somewhere (or ingest it). It's much easier to make glucose from carbs than from oils and fats or protein

Oils & fats contain about 2.5 times the calorific value of carbs (per gram) but it is a slow process metabolically making glucose out of oils and fats. "Like running the engine with the choke left on"

Protein has the same calorific value per gram as carbohydrate, but its an even more messy stressful business for the body to convert proteins into glucose, which puts a considerable strain on the liver and kidneys - in the long term leading to serious harm to these organs

But the summary point is that, whether it suits your fads or not, you HAVE to have glucose to fuel the cells in your body. Whether you ingest it (efficient) or make it from other substances (slow and suppressed) C₆H₁₂O₆ is essential for life. Soz

in reply to WinnieThePoo

Producing it vs ingesting itHuge distinction which you did not make until now

So

Back to my point that ingesting large quantities of sugar is unhealthy which you have argued with silly reasoning on other posts

Go enjoy your peaches ☺️

Au revoir for now

WinnieThePoo profile image
WinnieThePoo in reply to

But mother nature puts it in milk for babies and young animals to ingest??

in reply to WinnieThePoo

Yes and I’ve pointed out previously milk for who? Old men or babies? How about research the difference between old men and babies? ☺️ Babies produce a lot of ketones btw

WinnieThePoo profile image
WinnieThePoo in reply to

Does mother nature produce a food for old men? Why do you suppose she would exclude sugar from it?

WinnieThePoo profile image
WinnieThePoo in reply to

I'll pick a few wild CoQ10 berries whilst I'm there 😂

in reply to WinnieThePoo

What ingredient in these CoQ10 berries is widely known to be harmful? It is naturally produced by the body like your good friend glucose. Glucose deregulation is highly associated with so many detrimental health problems. Name one health problem associated with CoQ10 berries?

WinnieThePoo profile image
WinnieThePoo in reply to

Your studies that you quote about sugar are about refined sugar. Glucose. Although glucose is the form sugar is needed in for cellular fuel it is generally supplied in another form for easy conversion to glucose. Lactose in milk. Fructose in fruitI am intrigued to see the study linking fructose with health problems

If you check back, what I originally told you is our bodies are designed to run on carbs. That is fundamentally true - at a cellular level we have to burn glucose as fuel. We are built to run on sugar

in reply to WinnieThePoo

This is fun and all Pooh but it is also a bit silly. You are intentionally missing my point. For example, fruit which you defend which I am saying is often detrimentally high in sugar is very obvious.

“We are built to run on sugar.”

Such a dangerous over simplification.

The reason I even bother with time wasting exchanges like this is bc I fear for PWP who read misguided and over simplified info like this and take it as justification to ingest sugar to their detriment. Insulin resistant is prevalent amongst PWP.

I think you want to be right more than you want to be helpful and I find that frustrating bc I am deeply concerned about PWP.

Your conclusion “we are built to run on sugar” is not going to age well as it is becoming more widely known the effects sugar has on the brain and biome. Please, think first of the wellness of PWP and less on a need to one up the person you are conversing with.

WinnieThePoo profile image
WinnieThePoo in reply to

We are built to run on sugar is not a dangerous oversimplification. It's not my fault you were unaware of how our cellular metabolism operates nor the importance of glucose for cellular respiration.

WinnieThePoo profile image
WinnieThePoo in reply to

I maybe should express that more directly. I try to avoid to avoid upsetting your very sensitive nature, but I place much more credence on lengthy explanations by an expert in animal nutrition like David Frape than I do in the simplistic neuroses of a forum member with evidently limited understanding of the subject. However well intentioned

in reply to WinnieThePoo

Spin it and justify it however you want. On a public forum for PWP, singing the praises of sugar is not helpful. Almost no one will read the in depth reasoning. They at most will hear, "sugar is okay." and proceed accordingly which is detrimental. That is what you are promoting. You say I'm sensitive. Yes, I am sensitive to the best interests of PWP. Enjoy your ego boost of "being right." It is still not helpful.

in reply to condor39

So studies at Oxford and UC Davis are irrelevant by your standards. Both of which have strong evidence of the importance of B12 and D3. I do not see any purpose to your comment and others of yours I’ve read other than to dissuade people from being proactive. While you sit on your hands waiting for a pharma to drop in your lap, I and others are doing what we can with what we have. I know you are a retired doctor. I’ve already heard this. I have plenty of doctors in my family none of whom know beans about Epi genetics or nutrition.

condor39 profile image
condor39 in reply to

If “Hidden” is to research 37 different supplements, I assume there will be some kind of standard of criteria of benefit ? And this should be spelled out.A strong belief, however sincerely held, is not proof.

My daughter worked for a large pharmaceutical company. To get a new drug to market, approved by the FDA , it had to be tested in five different locations, . The cost to test each drug was three million dollars. And only one in three became approved, so to get one approved drug, cost $9,000,000. And you wondered why drugs were expensive? And nobody, nobody would get anything dubious past my daughter.

Your doctor friends, like most of us, are probably too busy using medications that have been proved to be effective, to chase after every supplement that someone thought had helped them. Add me to the ones that know nothing about Epi genetics.

I am easy to convince, all I ask is some proof. I am just as anxious for a cure to be found as anyone else.

Good luck to you.

He everyone! Thank you for your responses. Please, have no or at least very low expectations.

I’m just going to research to the best of my ability and type up my notes.

I have researched each supplement I’m taking but need to revisit sources and organize my notes.

That’s all.

I’m totally unqualified and it will be of very little use to anyone.

All info i use is readily available just via the internet and YouTube.

ccl,

Your idea may be a difficult one and it may turn up nothing or it might turn up something useful. You never know for sure until you look, but if you never look you never know! So thank you for taking the time to do it!

On a some what related note, I would like to mention something that I think most people on this forum who do a lot of reading of PD related studies can relate to. Often times when I start out on a path such as you are about to, I am very focused on where I think I am heading, but things come up as you read that get you started in another direction and these little "detours" can sometimes lead you to new areas of reading and new discoveries for you which can sometimes also be useful, so imo, looking is the important step because if we never look we never find new or better ideas!

Good luck on this road you are starting on and I hope you keep us updated on your findings, especially the detours!

Art

kevowpd profile image
kevowpd in reply to chartist

For you, it is a hobby. That is a not a criticism, but it appears true by definition.

If you enjoy it, then it's no different to any other hobby.

If, however, you do it because of some projected future pay-off, then how much time do you think that a PWP in their 40s with two school aged kids should spend undertaking this kind of research that you have described?

laglag profile image
laglag in reply to kevowpd

As much time as she wants to. Her idea is good & it could end up being a useful tool. Cc is very determined. I'm sure she & we will learn a lot from her wisdom and determination.

kevowpd profile image
kevowpd in reply to laglag

Are you familiar with the concept of 'opportunity cost'? It's especially relevant to PWP.

laglag profile image
laglag in reply to kevowpd

Yes, it involves choosing the best possible solution in the options you have and not lose out on a better solution. Her outcome could do that, couldn't it?

kevowpd profile image
kevowpd in reply to laglag

Anything could happen. Will it? Probably not, no. In the meantime, what have you sacrificed?

If we are talking about the discovery of a formula to alter the course of PD (be it in one person or in many), how do you measure these things? Its not even possible to evaluate one substance in this regard, nevermind 10 or 20 at the same time.

Cc is in early days of her diagnosis. Who is to say that she will not succeed [eta: in at least slowing progression so that she is not affected so badly], and then the skeptics can all say "She was misdiagnosed!"

This is from a cancer center, emphasis mine:

"Always hold on to hope. Positive expectancy is very powerful. Surround yourself with people who believe you can get well. Find the spiritual practices and the support environments that will nurture you. Live every day of your life with the deep awareness of what a gift it is. Appreciate that which is good and life-giving."

Do you want to have a shot at answering my question?

Presumably you'd agree that 168 hours a week of research would be too many. Clearly, it's going to be more than 0 hours a week.

What would you consider a reasonable number of hours, considering the circumstances as you understand them to be?

As many hours as she wants to.

Do you also monitor what she does in her spare time? How many hours per week do some people sit staring at the television?

Not to mention that she is a homeschooling mother. There are a lot of teaching opportunities available through this too, so her children may benefit as well.

in reply to crimsonclover

Exactly. You understand. And I don’t like TV at all, boring. I genuinely love to learn. Thank you.

I've thought about getting turquoise killifish (a model for aging and considered by some to be a natural model for Parkinson's) and doing simple (and humane) experiments at home. I've thought that if I got some experience I could put out instructions that kids could use to do their own experiments for science fair projects. I think kids might find it fun if it turns out they are not too hard to rear. You could test stuff like red light exposure, red light plus ubiqiunol, red light plus dietary chlorophyll , etc.

in reply to crimsonclover

That is beautiful and I appreciate it very much! 🌸

crimsonclover profile image
crimsonclover in reply to

We were a homeschooling family too.

WinnieThePoo profile image
WinnieThePoo in reply to laglag

Since this has strayed into my area of professional expertise...That is incorrect. You are describing the modelling concept of optimization. In fact, that solution can only be considered in the simplest of models - and surely not in complex real life situations. The modelling simulation used in real world solutions is "satisficing". You evaluate alternatives until you find one that's just good enough and use that.

Opportunity cost is the cost of not doing something. The opportunity cost of not building a factory is the profits which could have been made if you built it

Despe profile image
Despe in reply to WinnieThePoo

Reading all your comments here, WTP, or rather Dr. WTP, what did you do to stop PD before you were diagnosed? Did you put your theories to work? Did they work?

WinnieThePoo profile image
WinnieThePoo in reply to Despe

Actually my last comment although responding to the posts had nothing to do with PD. It drew on my Bsc in business management.I haven't claimed there's a cure. I have been open about the solutions I have tried from trial participation to red light and exercise. I keep hoping something important will come along but recognise it's a progressive condition. I appear to be happier with my results than you are with yours, but then I'm not experimenting on somebody else, so I can't blame their personality for my situation

I added to my post to clarify my intentions and lower LOWER expectations. 😊.

A book on herbal medicines interactions:stonybrookmedicine.edu/site...

CCL So you scare the hell out of those poor people at bigpharma, as you can see they immediately ran screaming like crazy not to do it.

you terrified them.! (not that it's hard to do)

👏👏👏

LOL Extra Lol 😂😂😂😂

Not sure if anybody addressed vitamin D and vitamin K interactions which gets quite confusing when you see them combined in many supplements. According to Consumer Labs:"A laboratory experiment using intestinal cells from mice found that uptake of vit. K was reduced by approximately half by vitamins A, D and E - likely due to competition for absorption among these fat soluble vitamins."

pubmed.ncbi.nlm.nih.gov/254...

Although we know that mice studies do not always translate to humans, but still it may be better to take vit. D and K at least 3 hours apart according to Consumer Labs recommendation unless there are some new findings.

in reply to faridaro

Thank you! That is the kind of info I’m looking for! Would timing D3 with fish oil be good? And K3 with second dose of fish oil? Turmeric absorbs much better with a fat so maybe take then too?

To your knowledge, can the B vitamins all be taken together? And B s should be away from food but not too late in the day bc of sleep issues?

I’m wondering how acidic foods like coffee work in this equation?

I will look at the study

in reply to faridaro

I hope my edit comes up Additional questions

faridaro profile image
faridaro in reply to

According to Consumer Labs vitamin D is best absorbed when taken with a meal containing fats or oils, so fish oil can only help with that. Not sure about vit. K with fish oil, sorry don't have information on that.

Regarding B vitamins I think they are OK together and taken with food, unless there are some new discoveries. If i find anything new on that, will let you know.

Good question regarding coffee and I wish I would have an answer, may be some forum members can shed light on that.

Please see Farooqji's latest post. It is a book on herbal interactions. It may be a big help !

in reply to KERRINGTON

Thank you! I definitely will!

Buck Institute researchers have stated that a fairly large percentage of 'geroprotectors' - anti-aging substances - seem to have negative interactions based on studies in nematode worms (surprisingly good model organism for screening large numbers of substances), but not all the findings have been published yet:

youtu.be/_EgfN8b1PhA?t=2202

cell.com/developmental-cell...

~

NAC interferes with benefits of sulforaphane (the active from broccoli sprouts) in an in vitro model of cancer - no telling what happens in a whole mouse or human when they are combined.

doi.org/10.1080/16546628.20...

Hello all, I am taking an extended break from this forum. I will be doing my learning and laymen researching on my own for a while as I think that will be a more efficient use of my time. I get too side tracked with discussions & debates over things not related to my intentions and not what I think I should be focusing on. If my self discipline for reducing phone and computer distractions was better this would not be a problem.It is my hope that my efforts can culminate in information worth sharing with you all. Thank you for your kindness and support.

GioCas profile image
GioCas in reply to

You are sure you want to have a serious discussion with Winnie the poo quoting Mother Nature as a scientific cause,… IMO it's best to take a break 👍.

No!

About sugar I quote what Father Time told me, ie that at the last Council of legendaries with Santa Claus, his wife Mother Nature invented sugar to be able to send the Tooth Fairy even to the elderly.

Also present were the Easter bunny, the SandMan and Cupid.

Here is the video: youtu.be/DCIUwXGH0ig

😂

Rhyothemis profile image
Rhyothemis in reply to

Maybe keep a blog with notes - that's what I (try) to do. Hope to see you again when you are ready.

You may also like...