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12832842 tn?1448728801

Fatigue? This is worth another look

Hi..
So I posted a question awhile back wondering if anyone has heard of " mito-Q".. Which is a patented antioxidant targeting the mitochondria. It descended from discoveries of coenzyme Q-10 which has been around for years. However unlike q-10 ., this particular " version" penetrates and performs better. This is my non scientific language. Science20.com offers an explanation more than I can!! I think it was originally meant to target the anti aging community.. And I'm sure there may be some benefit there.. But the neurological science was discovered. As many accidental discoveries are. If I'm correct.. Copaxone was found by accident to help aid in ms treatment.

The reason I'm posting is because my husband , in his research and love for molecular science, decided there is a lot that makes sense in terms of mitochondrial disfunctions. There are such more eloquent and verbal exchanges with regards to particular data on this! I'm just speaking plainly!!

So anyway......my hubby went and got this stuff anyway, I was very skeptical and went into taking these supplements with absolutely no expectations. I was just making him happy by trying. Well.. It's been almost 3 months and I have been 98% better with fatigue and weakness to which I suffered almost daily. I think I've had one day I can remember feeling some slight ( very slight) weakness / fatigue that lasted maybe 15 min. And I've not changed my routine-schedule-eating habits-excersise routine- nothing.
I'm sharing this because if this can possibly help some of you out there with fatigue, as it seems to have me.. Then I just have to put it out there. No.. This is not a cure..not some miracle product i'm endorsing.. And it won't be helpful to everyone as there isn't such a product that would ever exist. But I really believe it's worth a try.
Amazon carries it and you can read reviews. There are quite a few from people with MS. If it is too expensive to experiment with.. Then I'd suggest ubiquinol , a reduced form of co Q10.
I just want to help.. I figure anything I can talk about I have personally experienced , then it's worth it!!  
All the best!!--Andi
14 Responses
667078 tn?1316000935
I was suppose to be in a study at NIHS for cQ10 for PPMS 6 years ago. I do not know how the study came out. There is probably something to it.

Alex

5112396 tn?1378017983
To be honest, this product and that website to not pass my sniff test. There are too many red flags, from the lack of scientific studies on the product to the lack of peer review on the site you mentioned. In the world of drug treatments, anecdotes don't count. I'm glad you feel it's doing something for you, but absent evidence that I couldn't find, I'm not lightening my wallet.

Mentions on various websites found via google are cut-and-paste press releases, not 'articles'. The phrase "a dozen years ago" pops up in internet mentions from 2012, 2013, 2014, 2015, 2016 in word-for-word form. It's a sales pitch.

I can not find a legitimate study on PubMed relating to MitoQ. If you have one, please link to it as I would be curious to read it. Accidental discoveries become innovations when they can be replicated and stand up to scrutiny. This just feels like another product that slipped through the dangerous supplement loophole in the FDA.
5265383 tn?1483808356
You might be interested in this article, Andipw3 -- not sure it will link, but if not, search "Is multiple sclerosis a mitochondrial disease?" Peizhong
http://www.sciencedirect.com/science/article/pii/S092544390900146X
My naturopathic doctor agrees with the mitochondrial link to ms; for the moment I am supplementing with a few things.  It might help.  It might be a colossal waste of money :P.
12832842 tn?1448728801
Thank you! I'll look into it.. I think there's something to mitochondrial connection.. I agree.. We all have to be careful. I don't think the FDA approves any vitamin- supplements..? Isn't that true?
12832842 tn?1448728801
Hi there.. Check out ( Google) mitochondrial dis function and neurological diseases.. There's great info out there.. By the way Q-10 has been used for Parkinson's ( high doses). And it's not so much mito -Q specifically as opposed to Q-10 - ubiqionol. I think it's best to study mitochondrial disfunction in neurological diseases and you'll see more about Q-10 . Mito Q is just a more absorbable form of it. Let me know what you think!
12832842 tn?1448728801
I remember you mentioning that. I'd love for you to look into ubiquinol.. It's more absorbable than coq10.  Less expensive than the  mito-q" .  Coq10 has been proven safe and as I mentioned, used in high doses to treat Parkinson's and I believe Alzheimer's. As far as ms goes I think it's worth trying to see if it helps with fatigue, and energy. I've also noticed I'm much more " clear headed". Not as foggy as I've been.
Research what you can and of course talk with your doctor.
12832842 tn?1448728801
By the way, I'm not sure how " best answer" came up?!??  Lol! I must have hit something???
5112396 tn?1378017983
It's the lack of information regarding the 'brand name' formulation that raises my antennae. Whether or not Co-enzyme Q10 as either the ubiquinol or ubiquinone molecule is useful in certain conditions is another discussion. It's the sales pitch and claims of this particular, apparently untested formulation that has me very skeptical.

It appears one formulation HAS been approved by the FDA as an orphan drug for very rare disorders such as coenzyme Q-10 deficiency, as well as conditions resulting in mitochondrial deficiencies. Most of the published data seems to be in relation to heart disease, and the claims of benefit seem equivocal.

The good news is it doesn't seem to be harmful. I'm just not seeing where it's beneficial either. And good quality info on the specific version you mention seems non-existant.
12832842 tn?1448728801

Gotchya! Ok.. Well Yes, I'm thinking that trying the more absorbable q-10 is a safe experiment with regards to energy . It will benefit on the cellular level.. Particularly the mitochondria found in all cells. So I think there may be multi benefits. I have a feeling this mitochondria target is going to be a new buzz word with MS. In a good way. I'm certain there is no money for the pharma companies to make off it .. So it's realky a question of if anyone is interested in additional " help" in a more natural way.  I hope some of you give it a shot. Fatigue is one of the awful , sometimes daily, struggles for so many of us. All I can say is I feel better. I don't know what else to contribute it to. I thought about going off it and see. But I don't want to take the risk! I've been much more " myself" with it.
Also!!!! My MRI came back stable . So I can stay in my copaxone. Yay.
1 Comments
Good news on the MRI!

I know that Dr. Terry Wahls has a video online called "Minding Your Mitochondria". It is a way of eating that she found seemed to help her MS.

I am not a big fan these days of all the seemingly "great for MS"  foods/herbs/supplements.... I think the Internet makes it too easy to be  exposed to these seemingly endless theories and that is all they are until there are studies and trials.

Having said all of that, some of these theories may help people with MS and if you can afford the extra $ that inevitably comes with them, then go for it.

It struck me while reading your thread that looking into all avenues of treatment wholistic, pharmaceutical, dietary...is something a lot of newly diagnosed people do.  That means you intend to fight this disease with all of the power in your arsenal and that is a good thing. No matter what you try, never lose that fighting spirit.

Sorry for the ramble,

Corrie
5112396 tn?1378017983
Actually, the main study I was able to find was co-sponsored by the advocacy group "International Coenzyme Q10 Association" and PharmaNord, a pharmaceutical company. The trope of pharma not being interested because it's not patentable doesn't hold true here. In fact, sales of CoQ10 reached almost a billion dollars in 2008. So, there's plenty of profit there, mixed with almost no regulation of the claims made. I find that a toxic cocktail.

Again, I couldn't find any mention of it causing harm, but no evidence of benefit. I get very protective of our community (the wider MS-having community) when great claims are made. They require great evidence. Corrie is correct that there are many fronts on which we can fight back, but critical thinking is a heck of a weapon. It's the one I prize most.
9745005 tn?1410044366
Very interesting!  I have an appointment later today with my naturopathic doctor and will ask him for his take on this.  I am dealing with CRAZY fatigue and weakness to the point where I am barely functioning, I can't continue like this.

Karen
12832842 tn?1448728801
Hi Karen.. Remember, it doesn't have to be " mito-Q".. Just a more penetrative form of Q-10..  Or ubiquinol. Regular q10 has not shown to absorb as well. Again.. If it's not dangerous.. And affordable. May at least try it. For fatigue. Im still going strong. I just don't know what else it can be. Will be interesting however when the heat arrives. That is quite the trigger.
1 Comments
So I asked my doctor about it and he did say there is no harm in using it, mainly prescribed for those with heart conditions.  He prescribed Calm G which includes the Co enzyme Q10 which "helps regulate glutamate, protect cell membrane lipids from oxidation and promote cellular energy production".   I have higher, within the normal range, of glutamate levels,  which studies have found in patients with MS.  Too much glutamate can lead to excitotoxicity which can damage and kill neurons.  That is the cliff note version of it, still trying to read up and understand it all.  Overwhelming! =0

Karen
12832842 tn?1448728801
I'm wondering when the main study was done on Q-10. The ubiquinol format I think is fairly recent. In any event.. If it's safe.. Reasonably priced.. Data or not I can certainly attest to how I feel.
1 Comments
Fascinating ....
12832842 tn?1448728801
Hi Karen.. In looking at calm g it doesn't really compare to the amount of Q-10 that I'm speaking of which is the reduced form of Q-10. Your doc is correct in that Q-10 is helpful to the heart.. As the heart uses the most energy. The brain is right behind it with energy production.. So what's being looked at is now.. How this is helpful to those who have neurological issues.  I'm certain we'll be seeing more on this as time goes on. First you need to understand mitochondria. Then learn how Q -10 functions with the mitochondria. Then maybe it makes more sense. Again... I'm not advocating a cure, I'm not saying what I'm taking is going to help everyone as there's no such thing. It's more of trial and error within safety zones. My fatigue issues have improved greatly. Not 100 percent. But I'm getting through the day. With much more energy and efficiency. For now anyway.. Time will tell!! Good luck!!
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