So, I see that PQQ (Pyrroloquinoline quinone) has been talked about off and on for years on this site, and some people have indicated they were taking it. First question: who out there is taking or has taken PQQ, and what is/was your experience?
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-Next here is a post I copied and slightly edited from the Ataxia group where I am also active:
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Remember: Never try supplements based on comments from some quack on the internet. Do your own research and talk to your doctor first!!!
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This supp is new to me, and this tid bit was the first item that caught my eye:
Neuroprotective effects of pyrroloquinoline quinone against rotenone injury in primary cultured midbrain neurons and in a rat model of Parkinson's disease
and buried deep in that paper there is this finding:
"PQQ attenuated APO-evoked rotational behavior and reduced the neuronal loss in PD model rats . . . APO-evoked rotation was significantly reduced in PQQ low-, medium-, and high-dose groups"
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Well that's just fine right . . . but what the heck is APO-evoked rotation?
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"The apomorphine test using a rotameter has proved to be a popular test for screening the behavioral effects of a wide variety of lesions, drugs, and other experimental manipulations on the brain of rodents.
This test is widely carried out in experiments using animal models of Parkinson disease with unilateral lesions in the dopaminergic nigrostriatal system in which the number and direction of animal rotations is quantified after apormorphine treatment."
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I'm still not there Joe - what does it MEAN!?
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Rats that had neurologically induced trouble with rolling gait ran straighter on a rotarod with less rolling motion after they were treated with low, medium, or high doses of PQQ!
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Does this mean it will work in humans? Who knows. A LOT of stuff that works in rats and mice doesn't work in humans, BUT - there actually are a couple tiny studies of PQQ in humans. Sadly they had nothing to do with Parkinson's, but at least there is something in there about humans:
Dietary pyrroloquinoline quinone (PQQ) alters indicators of inflammation and mitochondrial-related metabolism in human subjects
And finally there is this article that is a promotion for PQQ being sold by Life Extension. The article isn't so important since it's written with the intent to get you to buy the stuff, BUT at the end of the article are all the references to the actual science behind PQQ, and THAT is very interesting (at least to me )
Anyways, I ordered 3 bottles of the 20 mg capsules and will add them to my list of daily supps and report back any changes
Joe
and then I posted this today:
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As a brief side note PQQ is not some weird man made chemical. It is a "micronutrient" found in food including breast milk! - one study in mice showed that when pregnant mice were deprived of PQQ in their diet the offspring had stunted growth.
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Reading more today on this supplement, and all I can say is wow, wow, WOW!! Let's start with this little gem. In this study they say this:
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" PQQ has been drawing attention from both the nutritional and the pharmacological viewpoint. Recently, it has been proposed that PQQ be classified as a new B vitamin. Thanks to the inherent antioxidant and redox modulator property of PQQ in a variety of systems, the possible pharmacological applications of PQQ are also being investigated. Recently, PQQ has also been reported to show neuroprotective effects."
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Pyrroloquinoline quinone inhibits the fibrillation of amyloid proteins
Basically these studies are showing the same effect of PQQ on misfolded proteins. Sadly it's all in test tubes and animals. What we need is more human research! Clearly, this is another example of a chemical that deserves serious study in numerous disorders, but it is being ignored because a) there's no money to be made and b) it's outside "normal" western medicine's view because it's a "supplement". Thank heavens for researchers who are interested in science and not profit!!
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Anyways, I'd love to hear from folks that are taking it or have taken it!
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Joe
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sunvox
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Hi Reb! Thanks for the reply! I found your post from a year ago when you joined. I'm sorry to here that you have had trouble with depression. My family has several members that suffer as well, and I am keenly aware of how difficult it can make life.
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Would you mind sharing what supplements you take, and since taking supplements would you say you have seen progression stop? I also commented in your exercise post. Are you still exercising 30 mins at 80%?
I wouldn't say progression has stopped but it's very slow. I haven't been doing the 30 min 80% exercise for the past month or so, holidays and then a trip have made it difficult but I plan to get back to it. I do exercise almost every day, however. I went to a workshop with Joaquin Farias in Toronto and am doing his protocol, and will be starting low level laser therapy. I'd be interested in your supplement list as well.
I have been taking PQQ for 7 months now. I have noticed a few things:
1. PQQ is probably the strongest of any supplement out there at boosting Nerve Growth Factor (NGF). This means that it will protect the cholinergic neurons, which are responsible for producing the brain's most important neurotransmitter, acetylcholine. The cholinergic neruons are located behind the nose and they project deep into other areas of the brain. These neurons get damaged more and more as PD progresses, and their damage plays a big role in cognitive issues in PD. A large portion of those with PD will suffer cognitive decline, memory problems, and eventually dementia as the disease progresses. By boosting NGF, PQQ helps maintain the health of these neurons. Not to mention that NGF helps boost the health of a good bit of other brain tissue as well.
2. The other incredible thing is that PQQ boosts NGF for the peripheral nervous system. In PD and other synuclein based diseases, the peripheral nerves are attacked and clogged up with alpha synuclein. This means that your brain can no longer communicate to the rest of your body very well. One reason for this is that in PD, the peripheral nerves slowly shrivel up and die. For example, the optic nerve (which provides you with eyesight) was shown to be significantly thinned out in those with PD, and this is probably ONE reason why those with PD suffer from issues with vision and depth perception. Anyways, this peripheral nervous system dysfunction plays a role in autonomic dysfunction encountered in PD, such as constipation, urinary dysfunction, and orthostatic hypotension. The more that autonomic symptoms are present, the higher the risk of cognitive decline, dementia and death. Particularly the most troubling of these is orthostatic hypotension, because it's occurrence and severity is very strongly correlated with dementia and death. However, the incredible thing is that the body's nerves can regenerate quite nicely. Yes all these nerves can grow back, however NGF is required for the regeneration to occur. The other thing that is required for nerve regeneration is stimulation of the nerves. I use a hot bath at 105-106 F for 30 minutes to strongly stimulate nearly every nerve in my body (sauna would work for this as well). Occasionally, i'll also go for a massage which tickles the nerves as well. This stimulation + PQQ will result in the peripheral nervous system regaining a decent amount of its function. Your brain will more easily be able to communicate with the rest of your body (aka your organs: eyes, intestines, skin, muscles, etc). However, this regeneration will be somewhat limited because alpha synuclein is blocking this process somewhat. If you could figure out a way to deal with the synuclein, the nerves would regenerate much more easily and their health would be much better. Nevertheless it will regenerate slowly but keep in mind that this process doesn't happen overnight.... smaller nerves (like those on the skin) can grow at 1mm per day, and bigger nerves can grow at up to 3mm per day if there is sufficient stimulation.
Someone on this forum said that PD is a muscle wasting disease, and they are correct. This is because muscle doesn't simply exist on its own. Muscle requires significant communication with nerves and the nervous system in order to maintain itself or to grow. If the nerves surrounding muscle are not healthy or are dying, the muscle will not maintain itself very well. This is ONE reason for the weight loss / muscle loss issue that is encountered in PD. For this reason, if you do things such as take PQQ and regularly stimulate your nervous system, this may make it a bit easier to maintain muscle or gain muscle.
The other issue is that neurotransmitters are used to send signals down all these nerves and in PD there is a lack of these neurotransmitters in the nerves. I'm referring to neurotransmitters like acetylcholine and norepinephrine. These things are REQUIRED in the peripheral nervous system. For example, if you want to fix your orthostatic hypotension issue, you're going to need to boost norepinephrine and fyi one of the best ways to do it is with the sauna or hot bath. Using the sauna or hot bath causes a nice (and very signficant) upregulation of norepinephrine for at least 48 hours afterwards.
3. PQQ will promote the production of new mitochondria, and help support existing mitochondria. That's a pretty amazing thing, and there aren't too many supplements out there that will do this. I am able to feel a mild but noticeable boost in mental energy for about 5 hours after taking PQQ, particularly if I was tired beforehand.
The half life of PQQ is 3-5 hours so for me it makes the most sense to take it twice a day. I take 20 mg pills, for a total of 40 mg daily. I seem to notice the effects of PQQ a bit more if I take it with food.
Thanks for the reply. I am very interested in the fact that you are taking 20 mg twice a day as I was considering doing the same!
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If you click on my screen name and search through my posts you will find that I am intimately aware of the science involved with PD as well as my own illness which is SCA1.
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If you are interested in cleaning out more of your alpha-synuclien misfolded protein aggregations, you may want to research trehalose. It was the first supplement I and my family started taking and about 75% of the people who have tried it around the world and contacted me via email have reported results similar to what my family experienced which is essentially a stopping of progression of their SCA symptoms. Most SCAs are the result of a mutant strand of DNA that produces a misfolded protein which forms aggregates and cause neuronal death just like alpha-synuclein in PD. Anyways here's a list of some of the research I have collected on trehalose:
All that aside though I was wondering if you could tell me a little more about what your diagnosis is, what symptoms you have, what supplements you take, and whether or not you have noticed a change in symptoms.
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Lastly I would offer a tiny bit of advice. We each make our own choices in life so in the end people can do as they see fit, BUT sci-hub is a Russian pirate site. The information you collect there is stolen and makes the person using it a criminal. People on this website have been banned for suggesting it's use.
sunvox, what do you make of this article regarding trehalose?
"A Common Sugar Additive Might Be Driving The Rise of One of The Most Aggressive Superbugs
Antibiotics are only part of the problem.
DAVID NIELD 6 JAN 2018
A sugar additive used in several foods could have helped spread a seriously dangerous superbug around the US, according to a new study..
The finger of blame is pointed squarely at the sugar trehalose, found in foods such as nutrition bars and chewing gum.
In this case, trehalose is being linked with the rise of two strains of the bacterium Clostridium difficile, capable of causing diarrhea, colitis, organ failure, and even death.
The swift rise of the antibiotic-resistant bug has become a huge problem for hospitals in recent years, and the timing matches up with the arrival of trehalose."
That is some wild science. Thanks for sharing! It seems to me to raise more questions than it answers, but my VERY brief look at the literature seems to point to one important factor: the majority of people who get the "super bug" have IBD and just got discharged from a hospital so thankfully I'm hoping this is not a "epidemic" of global proportions. How did you come across that?? Do you know someone that was infected?
No, I do not know of anybody who has been infected, my wife and I are concerned and vigilant about microbiome intestinal health, as she's had microscopic colitis.
I don't know if I have IBD, (I have had stomach pain the past few weeks and I'm a hypochondriac, ha) but, I thought most of us PWP have compromised microbiome health which might include small intestinal bacteria overgrowth and/or H. Pylori, (both of which I just recently decided to be tested for) so, might this exacerbate that?You must not feel there is a meaningful threat to encouraging bad bacteria overgrowth or do you feel we can mitigate that through nutrition and supplements? I like that it up regulates autophagy. I'm a DIY user thereof Nilotinib for the same purpose.
Sunvox. Do you have any thoughts on the tricyclic anti-depressants such as Nortryptaline and Amytriptaline? Both appear to suppress choline (and the latter I use to help sleep) which isn't a good thing I realise this but as you probably know there is a Canadian scientist who argues that these break up Alpha Sy. The scientist who you sometimes cite similarly appears to support the argument that the tricyclic's are a boon rather than a bane. Would be interested to hear your thoughts.
Members of my family suffer from depression as well so based on my personal experiences I would say that if nortriptyline helps with your depression than by all means you should continue. The fact that it MAY help reduce alpha-sy is just a bonus. In theory reducing alpha-sy could slow progression so even though PwPD did not see a reversal of symptoms they may have been slowing the progression with nortriptyline and didn't even know it.
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Bottom line: I am NOT a doctor, but as an educated patient it is my opinion that if your doctor is recommending it, and it helps your depression symptoms then that is a real plus and makes it worth taking.
While it’s true that there is less money to be from sale of supplements, there are other problems as well. It takes millions to do blind studies on products and those millions have to come from somewhere. future sales, usually involving cornering the market on a product via patent, raise that R&D money. Supplement companies can’t afford to fund this kind of expensive research.
One would like to think supplements might be recommended by one’s doctor but that won’t happen... he can only use tested product or he risks a knock on the door from the trial lawyer.
Yes! I am acutely aware of that fact as I have been working with doctors at Harvard medical to try and get a clinical trial of trehalose, but the cost estimate is $3.5 million. Collecting that kind of money is NOT easy.
Thanks for the link! Have to add that to my list of trehalose research papers. What an incredible tragedy trehalose has been ignored for a decade or more.
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