Coenzyme Q10/Ubiquinone - Ubiquinol

[sgtnick]

dio............

It could take a long while, two weeks is not very much time to determine if it will help you.  Some people get no relief from anything.  I tried everything for 3 years and got no relief (so I got implanted).  Some men get immediate relief, it appears.  One thing Peyronies Disease will teach you is patience!  You probably need to try everything that you read about here, provided you have no adverse reaction.

Are you taking Pentox, L-Arginine, are you doing VED therapy?  Try anything that is safe and within acceptable medical practice.  Also, try to read new postings everyday.  I have been reading for three years and have had no adverse reactions from what I cleared with my doctor.
Remember:  No two men are exactly the same, what works for you may not be what someone else needs.  This disease is BAD, however, there is a solution for YOU.

Good luck, and God speed.

[George999]

I agree completely with Nick.  It takes a LOT of time to really be able to tell whether something is going to work or not.  Months not weeks and probably more than two.  And, unfortunately for some, nothing works.  You have to be patient, methodical, willing to learn and keep learning and tenacious.  You have to be very determined, follow the science and have extreme patience when trying those things like Ubiquinol and Pentox that have been shown effective to various degrees in multiple patients.  - George

[goodluck]

What is the recomended dose of ubiquinol to be effective?  I hear it is more efficient that CoQ10 to in therory you don't need to take as much.

How long before any reduction in symptoms would be noticed.  in other words, how long should i give it to tell if it will work for me.

[crashbandit]

There's another thread in this section with the exact same header, "Ubiquinol".

All the info you will need about doses and much more.

[goodluck]

OK, thanks.  It looks like most feel that on 300mg a day it reduces pain.  I assume that it is sustained if you stopped or cut back.

Interesting that some said they added PQQ which is suppose to help with rebuilding the mitochondria.

It has been about 6 months since some folks said they were taking it.  Anything to report about the PQQ?

[George999]

The 300mg (100mg 3x per day) comes from what was used in the successful study.  As with anything else, if you cut that back, you will see the beneficial effect diminished.  By how much will be different for each individual.  How much benefit you get will be different for each individual.  But I wouldn't necessarily expect any benefit until you have used it religiously for at least 6 months.  Some of us have been using PQQ to varying degrees.  PQQ, although certainly interesting, has NO research showing any benefit for Peyronie's and therefore, I would not waste time and money on it UNLESS I was already using and planning to continue to use Pentoxifylline AND Ubiquinol/CoQ10, the two oral treatments WITH research evidence behind them.  - George

[newguy]

I hope another study comes out sometime. It would be great to contrast two studies on Ubiquinol. If it was successful once again, hopefully urologists will start to take note.

[George999]

Indeed!  What I would like to see at this point as well is a well designed study looking at a combination of Pentox and Ubiquinol.  That really worked like gangbusters for me and I think the results of a study would be doubly impressive.  - George

[goodluck]

I am all new to this so I may be asking some dumb questions.

I was wondering if all the gains obtained from taking oral treatments such as Ubiquinol, pentox et al. would be sustained if you stopped taking or reduced dosage.....  if would seem to reason that if the scare tissue is reduced, stretched and soften it may stay that way.  But I don't know.  What, if any, experience do folks have if they cut back or stop oral treatments.  Do they regress backwards?

[mike67]

Hi George999
I have been on these meds , including Pentox & L'Arginine, and VED ( since June 2010)since last November but so far I have seen no improvement at all in my bend. I have no pain but still the bend. I realize it is hard to say on an individual basis when to expect something positive .When you say that they have really worked for you , I don't doubt it. Can you state exactly what they did for you?
What can we , should we , expect from taking these meds on a daily basis? Do you think there is an outside timeline where one should give it up and start preparing for Verapamil injections or worse - surgery?
Hard to say I realize. Just interested in how they have worked for you.
Mike67

[George999]

Mike, all I can tell you is that the improvements I have seen, which include significant improvements in girth which would imply scar tissue regression, have occurred slowly over a period of years.  I think that anyone who demands short term gains will end up flitting from one useless treatment to another and *never* see improvement.  So it is a matter of staying the course.  Even the VED takes time to do the job for many guys.  And some guys do all of this and never see improvement.  But its something you have to throw every proven concept at.  Certain stuff has been shown to work for some guys.  You have to stick with those things.  Diabetes has been shown to greatly increase the chances of ending up with Peyronie's.  So you have to fight to get your blood glucose levels as far away from the diabetic area as possible.  If diabetes provokes it, you want to be as far from that as possible.  Whoever is serious enough about Peyronie's *will* *eventually* see results.  Of that I am confident.  Over the last three months I have been working on the whole blood sugar issue.  I struggled to get my fasting levels down to 103.  Over the last few months I have discovered some new strategies that have allowed me to get that down in a short time to 95 while still consuming a lot of fruit which I am loath to give up for nutritional reasons.  I am now working to extend that further since I really want my fasting blood sugar levels no higher than 87.  I am determined and confident that I will make that happen and that I will see significant further results in terms of Peyronie's as well as overall health as a result.  - George

[mike67]

Thanks George. Very encouraging. I guess  having been on the meds for just 5 or 6 months I am showing too much impatience.
I admire you for your perseverance in pursuit of improvement and the wealth of knowledge you have gained. Fortunately blood sugar levels don't happen to be an immediate concern of mine. Heart health - well that is another story. I know they are intertwined but mine has more to do with specifics , i.e. blocked arteries.
In the words of Chief Dan George ( in The Outlaw Josie Wales) "I will endeavor to persevere ".
Mike

[George999]

Just as long as you are aware that serum glucose is inflammatory and the more of it you have, the more inflammation you have.  It also tends to elevate serum insulin which is also inflammatory, so double whammy.  - George

[Fred22]

Still on the ubiquinol and ALCAR and still in pain.  I saw my surgeon yesterday and I'm scheduled for robotic prostatectomy on September 22.  He said that I should not be experiencing any symptoms with PCa at the stage I have it.  My biopsy indicated a Gleason 6, T1c tumor (basically a stage 1 cancer).  However, the whole prostate gland can't be biopsied so they won't know exactly how advanced it is until they get it out.  Just wish I could resolve this pain before surgery because that's going to pile pain on pain.  I'll also have to wear a Foley catheter for about a week or so.

[Farinthesouth]

Fred: I wish you all the best. Keep strong and faithfull.

Regards

[fubar]

Fred 22 I have followed your post sense before I joined the forum. I know your battles with stress and depression. I know your struggle with pentox.

With all that is going on with you I am sure they will help you with the pain.

If they do not demand what you need.Suffering is not going to help your situation.You need to be advised that after surgery poses alot of other therapy. I have heard that they clamp the penis back during surgery.

Not a good idea for a Guy having Peyronies disease and having prostate surgery.I have read alot of guys get Peyronie's from the clamping.I wish you the best Fred be aware of all that they do.

Fubar

[Fred22]

Fred: I wish you all the best. Keep strong and faithfull.

Regards

Thanks...Greatly appreciated.

[Gap]

To clarify, is the CoQ10 just for the pain, or does it have other benefits in relation to the Peyronies? Thank you.  

[newguy]

Indeed!  What I would like to see at this point as well is a well designed study looking at a combination of Pentox and Ubiquinol.  That really worked like gangbusters for me and I think the results of a study would be doubly impressive.  - George

Yes, i've been taking that combo for months now (and cialis). I also take vitamin E with the pentox, which I didn't do before. That's pretty much the extent of my oral regimen right now though.

To clarify, is the CoQ10 just for the pain, or does it have other benefits in relation to the Peyronies? Thank you.

The study indicated reduction in curvature too etc. Its effectiveness in the study went well beyond improvements in pain. It was only a single study though.

[goodluck]

At this point in time, does anyone know the theory(ies) as to why Ubiquinol works?

[George999]

It works because it is an anti-oxidant that protects cellular mitochondria.  Mitochondria provide energy for human cells.  When enough mitochondria become damaged, the cells become senescent or prematurely aged.  That is, they become dysfunctional due to lack of energy.  One of the results of this is tissue fibrosis.  Ubiquinol is able to at least partially reverse this process by protecting cellular mitochondria.  There is accumulating evidence that mitochondrial dysfunction is behind multiple degenerative diseases.

First paragraph addresses mitochondrial anti-oxidant capabilities of Ubiquinol:  http://lpi.oregonstate.edu/f-w02/coenzymeq10.html

This paper ties Cystic Fibrosis to mitochondrial dysfunction due to over oxidation of a Ubiquinol related protein:  http://www.ncbi.nlm.nih.gov/pubmed/21518732

This study ties anti-mitochondrial antibodies to fibrosis:  http://www.ncbi.nlm.nih.gov/pubmed/21374662

This study ties Ubiquinol (CoQ10) to inhibition of liver fibrosis, note the link to TGF-beta1:  http://www.ncbi.nlm.nih.gov/pubmed/19647758

I could continue on with a long list, but you should be getting the picture.  While Pentox blocks TGF-beta1, Ubiquinol also blocks TGF-beta1 indirectly by its anti-oxidant effects on mitochondria.  Mitochondrial dysfunction and resulting cellular dysfunction could be a trigger for immune system response involving over expression of TGF-beta1.  Thus Ubiquinol deficiency appears closely tied to this sort of syndrome.

At this point in time, does anyone know the theory(ies) as to why Ubiquinol works?

[goodluck]

George,

Thanks for the info.  I have not read it all  yet, but I will.

Seems it maybe the same or similar mechanism as to why ALC works too.

Using the same thought process the PQQ products by LEF may also help as they help support damaged mitochondria. .....At least in theory.

Good Luck

[George999]

I believe that it is similar to ALC, but far more effective.  I, too, find PQQ interesting, but not interesting enough to pay for it when there is no objective research supporting its effectiveness.  That is the HUGE problem about stuff that is likely to be effective.  You could exhaust your bank account and take pills 24hrs a day based on what *might* be helpful.  I really prefer to concentrate as much as possible on those things with some degree of legitimate evidence of their effectiveness.  - George

[goodluck]

I understand your feelings.  The PQQ products are priced rather high.  

I would hope PQQ would be near the top of the list for Peyronies reasearchers to test based on the results of Ubiquinol and ALC.  It seems like it may nicely complement the other two supplements.

Interesting that these are the same supplements that are recommended to Fibromyalgia and Chronic fatigue sufferers to help with mental/physical stamina.  The relationships here may not be not obvious but it strikes me both conditions  have to do with how the body heals and regenerates itself.

Not to get off topic, but has anyone looked at items that help generate ATP (Adenosine Triphosphate) in the mitochondria.  Like B2(riboflavin) and B3(no flush niacin).  Also, people with mitochondia disfunction have trouble making D-ribose and supplement with it.
Has anyone tried supplementing with it?
If there is interest to discuss, and folks have experiences to share, lets start a new topic.

[Fred22]

I'm having no luck in the pain department with either ubiquinol or ALC...I've completely stopped the ALC but still continue to take 300 mg. ubiquinol per day.  Today my pain is pure hell!! Good luck to everyone who is suffering.  I wouldn't wish what I'm going through on my worst enemy!!.... Fred

[crashbandit]

Fred,

Have you tried Celebrex? Your pain sounds alot worse then mine but I've seen near complete resolution of my pain since starting Celebrex full-time (every morning 200mg) 2 weeks ago. One big problem I'm having is stomach pains and constipation so I had to stop today:(

Highly recommend Celebrex for pain.

[George999]

Fred, I agree.  I would give Celebrex a try.  I think it has a lot more potential than hypnosis.  - George

[Iceman]

ive been on ubiquinol for about a year now and i think its fantastic at getting rid of the pain - in combination with pentox i firmly believe that i have got the pain side of things under control.

[newguy]

That's great news Iceman. Let's hope that more men start taking it so we can get further reports on how effective people feel that it is!

[Fred22]

Fred, I agree.  I would give Celebrex a try.  I think it has a lot more potential than hypnosis.  - George

George...I was NEVER seriously considering hypnosis...just saw the post where the guy was hawking his website and was seeing what reaction I'd get if I asked if anyone was considering it.  I'd love to try celebrex but already battle severe chronic constipation due to Klonopin and Remeron.  I'm afraid adding celebrex would jam me up beyond belief.  I'm not even taking ibuprofen, which has helped me with my pain, due to constipation.  I've done enemas, milk of magnesia, I'm now trying Miralax (Walmart generic Clearlax...same thing) but it doesn't work very well and I think drawing all that water into my colon may very well be contributing to my pain.  I know that often a good BM will relieve my pain...However, sometimes it increases the pain...just no rhyme or reason.  This along with the upcoming surgery is about to drive me over the edge.  I often really question if my life is worth living which is not my nature at all.
Any suggestions in the constipation relief department.

[George999]

Any suggestions in the constipation relief department.

Fred, So so sorry you halving all these problems going on at once.  I have found that fiber works well for me.  But the one that has never failed me is prune juice.  - George

[KAC]

Fred,

And also bacteria.  I used to make my own kefir which seemed to do wonders for my digestive tract.  It's not hard to do--I just ordered the grains from some place in Ohio--but it takes work to keep making it every day. (I originally did it for my wife who has autoimmune problems, but she didn't like the taste and I did, and I felt really good during that time.)  Now I just eat yogurt and sometimes make my own (and let it sit for 24 hours).

Sorry about what you're going through.

[goodluck]

Fred,
It is likely you are not making enough HCl to digest properly and your natural intesatinal flora is wrecked.

I have started to take a product called Zypan from Standard Process.  It helps with HCl production and has some enzymes to help you absorb your food better.  I have also been told it can help those with high blood sugar over time lower it. I don't know, but I thought I would pass this along.

I have also started taking 1 table spoon of apple cider vinegar after breakfast and dinner.  After about 2 weeks It has helped my digestion.  But it works slowly so don't expect immediate results.

If you don't like the taste of Kiefer you can take a good probiotic.
If you can't get the Zypan take digestive enzymes with each meal.  You can find them at any health food store.  

For pain related to inflamaiton you can take Tumeric, 400mg 3x a day.  Make sure it is standardized to 95%. I have found this excellent for tendonitis and some say it helps the digestive track.  It certainly won't harm it like Ibuprofin.

Good Luck.

[George999]

Without doubt, good quality probiotics and digestive enzymes can work wonders.  - George

[George999]

Oh, and what has REALLY helped me with my pooping is Konjac noodles.  They are marketed under the name "Miracle Noodles" at http://www.miraclenoodle.com.  - George

[Fred22]

I've tried the Phillips Probiotics Colon Health, but maybe not regularly enough.  The first time I took it it seemed to bloat me, so I laid off for a while.  Then started back, but still not regularly.  I still have some left.  Anybody know if this is a good product?  RE the prune juice.  It used to work for me but since I've taken laxatives and enemas so much I'm afraid my "natural intestinal flora" may be wrecked as Gooluck said.  The Miralax is strange....I may get several BMs a day from it, but they're very small amounts.  It also gives me severe gas.  I do eat prunes with breakfast and a few after lunch, but the juice may work better.  Haven't tried it in a long time.  I used to drink one of those tiny little cans and head straight to the john. Really need something that works.  I get so much gas and pressure from (I assume) poop that needs to be passed that I think it may be putting pressure on my prostate or bladderneck and actually exacerbating the Peyronie's pain.

[Fred22]

Oh...one more thing.  RE yogurt.  I read conflicting info on whether it's good for constipation.  George or Goodluck, I'm sure you know the answer to this one.  I get the Kroger plain non-fat certified by the National Yogurt Ass. for Live and active cultures.  I sweeten it with stevia.  Should I be eating this and taking the Phillips Probiotics? It contains1.5 billion cells Lactobacillus gasseri, Bifidobacterium bifidum and Bifidobacterium longum (the one that's supposed to make you poop).

[George999]

I certainly cannot see how yogurt could make anything worse.  - George

[Fred22]

I certainly cannot see how yogurt could make anything worse.  - George

How about the Phillips Probiotics?

[goodluck]

Fred,

I would not bank on the yogurt doing much for your situation.  It is typically recommened as maintenance or for those with a mild issue.  Personally I, would stay away from all cow dairy for now as it may cause digestion issues that you don't need. You could try organic goat yogurt, if you really want yogurt.

As far as the probiotic you mentioned.  I put it in the same class as One A Day Vitamins.  Good marketing but a weak product. It won't hurt but it is under powered. I took a quick glance at some products advertised in a handy issue of Better Nutrition magazine and the two Probiotics advertized had nearly 10x or more the cultures than the Philips product you referenced.

This is what I found:

Natures Way Primadouphilus:  14 strains and 35 Billion CFU  (I assume per gram)
Body Dynamics Total Digestion Pro Biotic:  50 billion CFU/gram

You may want to up  the dose of the Philips for now but I would get something else per the recomendation of your local Health food store.  You need professional strength.

You may also want to consider colonics.  It is a good way to clean out any intestinal plaque.  A good practioner will implant a probiotic at the end of the session depending on your particualr need.  

I am far from an expert here so I hope others will chime in who have specific knowledge.

Good Luck

[Fred22]

Fred,

I would not bank on the yogurt doing much for your situation.  It is typically recommened as maintenance or for those with a mild issue.  Personally I, would stay away from all cow dairy for now as it may cause digestion issues that you don't need. You could try organic goat yogurt, if you really want yogurt.

As far as the probiotic you mentioned.  I put it in the same class as One A Day Vitamins.  Good marketing but a weak product. It won't hurt but it is under powered. I took a quick glance at some products advertised in a handy issue of Better Nutrition magazine and the two Probiotics advertized had nearly 10x or more the cultures than the Philips product you referenced.

This is what I found:

Natures Way Primadouphilus:  14 strains and 35 Billion CFU  (I assume per gram)
Body Dynamics Total Digestion Pro Biotic:  50 billion CFU/gram

You may want to up  the dose of the Philips for now but I would get something else per the recomendation of your local Health food store.  You need professional strength.

You may also want to consider colonics.  It is a good way to clean out any intestinal plaque.  A good practioner will implant a probiotic at the end of the session depending on your particualr need.  

I am far from an expert here so I hope others will chime in who have specific knowledge.

Good Luck

Sounds like good advice to me.  I had thought the Phillips to be a commercial underpowered over hyped product (check out their stupid commercials on TV)...I'll check out iHerb or Swanson's or maybe a health food store.  Thanks.   Fred

[George999]

Of Course  ... part of the problem here is that if your gut is full of BAD bacteria, no amount of good bacteria you throw at it will do much good.  There are products out there that aggressively kill off undesirable intestinal flora, but that requires some stool testing to find out what your personal population entails.  Its a job for a good naturopath.  Our naturopath got my wife cleaned up in a way that revolutionized her life.  A year later or so we got invited out to one of those cheap chain restaurants and she ended up having to go through the whole thing all over again.  These products are a whole lot easier than colonics and a lot safer also.  - George

[Fred22]

Of Course  ... part of the problem here is that if your gut is full of BAD bacteria, no amount of good bacteria you throw at it will do much good.  There are products out there that aggressively kill off undesirable intestinal flora, but that requires some stool testing to find out what your personal population entails.  Its a job for a good naturopath.  Our naturopath got my wife cleaned up in a way that revolutionized her life.  A year later or so we got invited out to one of those cheap chain restaurants and she ended up having to go through the whole thing all over again.  These products are a whole lot easier than colonics and a lot safer also.  - George

Guess I'm out of luck in that department....no naturopaths in Memphis area.  What's the next best solution?  Thanks to all for your help..I really believe that some if not most of my pain is related to the constipation issue...as a good BM often alleviates the pain...

[crashbandit]

Hey Fred,

I'm surprised there are no Naturapaths in all Memphis?? Are you sure? I live in a city of 1 million and there are tons of them... how many are good is another question...

To avoid internal NSAIDS, you should use the topical NSAIDS. I have been using Diclofenac 10%, which is a topical aniti inflammatory since Celebrex burnt my stomach up bad! BEWARE with those NSAIDS!!! They work but at a great sacrifice to your gut. I'm having really good results with pain with this topical stuff, the same results the Celebrex gave me! Most people tolerate this stuff very well too.

[George999]

Alas, amazingly it looks like Memphis is a wasteland when it comes to innovative doctors.  In the state of Tennessee, all of the innovative doctors and Tennessee's lone naturopath are located in Nashville nearly four hours away.  But Fred, you might want to think about trying to get a consult with one of these Nashville docs.  I will send you a list via PM.  - George

[goodluck]

Fred,

Do a google search on "Functional Medacine" doctors.  They are typically MD's that are sick of allopathic medecine treating symptoms only and not helping people heal.  They try to use the best practices from all disciplines.  There are not a lot of them around but you may get lucky and find one within a drivable radius of Memphis.  Unfortunately most don't take insurance but any testing maybe covered.

You may also be able to find a holistic nurse practioner or a nutrition councilor.

Be advised that some Chiropractors are calling themselves "Funtional Medacine doctors".  Not that I don't like chiropractors, but many are using this wording in their business title to bring in more patients.  Some DC's are good at giving nutional advice but they are typically selling products which they make more money on than the consult fees.  So be carefull who you work with.

I agree with George that doing the right oral colon cleans is better than a colonic, in general.  It is more gentle and non invasive.  But is can take weeks to work.  If you have a serious problem constipation including toxins and plaque in your colon. A colonic may be a better immediate choice to give you some relief of symptoms.  Google on colonics and educate yourself and decide which approch is best for you.  I know a MD who does a colonic once a year just as maintance.  I personally agree that is good for most people who eat a SAD diet or those who have a tendency to constipation.  It is a good way to rid your self of yeast or toxins that have build up.
 

[Fred22]

Hey Fred,

I'm surprised there are no Naturapaths in all Memphis?? Are you sure? I live in a city of 1 million and there are tons of them... how many are good is another question...

To avoid internal NSAIDS, you should use the topical NSAIDS. I have been using Diclofenac 10%, which is a topical aniti inflammatory since Celebrex burnt my stomach up bad! BEWARE with those NSAIDS!!! They work but at a great sacrifice to your gut. I'm having really good results with pain with this topical stuff, the same results the Celebrex gave me! Most people tolerate this stuff very well too.

I'm well aware of the NSAIDS side effects.  Since I already have chronic constipation they really jam me up...also heartburn, etc.  Haven't heard of Diclofenac...will check it out.  Thanks

[Fred22]

Alas, amazingly it looks like Memphis is a wasteland when it comes to innovative doctors.  In the state of Tennessee, all of the innovative doctors and Tennessee's lone naturopath are located in Nashville nearly four hours away.  But Fred, you might want to think about trying to get a consult with one of these Nashville docs.  I will send you a list via PM.  - George

Got your PM...Thanks so much....I had already done a Google search and came up with basically the same list the last time we were discussing functional medicine.  I just don't understand why Memphis has no one in this field, but Memphis is a wasteland in many ways...Bible belt mentality, etc...Fred

[crashbandit]

Hey Fred,

I'm surprised there are no Naturapaths in all Memphis?? Are you sure? I live in a city of 1 million and there are tons of them... how many are good is another question...

To avoid internal NSAIDS, you should use the topical NSAIDS. I have been using Diclofenac 10%, which is a topical aniti inflammatory since Celebrex burnt my stomach up bad! BEWARE with those NSAIDS!!! They work but at a great sacrifice to your gut. I'm having really good results with pain with this topical stuff, the same results the Celebrex gave me! Most people tolerate this stuff very well too.

I'm well aware of the NSAIDS side effects.  Since I already have chronic constipation they really jam me up...also heartburn, etc.  Haven't heard of Diclofenac...will check it out.  Thanks

I have the Diclofenec 10% in plo kit (exactly what it says on container). My insurance covered it no problem. This stuff works fast. You should notice an immediate relief. If you have an inflammatory problem, this will work, no doubt. I have also noticed that It has made a huge improvment with my flaccid twisting after ejaculation. Once you try it, you will be writing me back to tell me thank you (not to jinx it).

[goodluck]

Fred,

I hope you have found relief with your constipation.  As an after thought, I remembered a Fermented Drink called G.T.'s Synergy enlightened. It comes in a variety of flavors. It is in Whole foods and other health food stores.  It is a fermented raw Kombucha and loaded with probiotics.  in the past I have drank 3 or 4 ounces and felt a big difference in my next BM.  If anyone tries it, start out slowly by only drinking 2 or 3 ounces and see how your body reacts. Build up accordingly.

It should be very good maintenance for anyone trying to maintain a healty flora.

GoodLuck