Do you guys believe any of the testimonials on this "Peyronies Disease HELP" site?

[MikeSmith0]

They all sound too good to be true.

Has ANYONE had any success with ANY supplement or drug?  I have yet to hear much.  I've been on ubiquinol, acetyl l-carnitine,  pentox, arginine, a variety of vitamins, and more than i can even remember.

Testimonials from the Peyronie's Disease Institute : Peyronie's Disease Institute

It's in Illinois... If it is real (and i think they would be sued if it was BS) - then isnt it worth a visit? Or should it be reported to the AG/FDA for fraud?  They are claiming their stuff CURES a disease - which is FDA territory.

[Jonbinspain]

I suppose the short answer would be No!  I've seen this site before and dismissed it as a scam. Looking again, my opinion hasn't changed. Most of what's in his "plans" is widely available far cheaper, and has been widely discussed on this forum.
I'm not up with U.S. law, but surely the guy should at least be challenged to provide full names and addresses of the people giving these "testimonials"

[ashtown]

I would take it for granted that any and all sites making remarkable claims about cures for Peyronies are run by scam artists. To the best of my knowledge not one of them can claim to have the backing of a top medical Peyronies expert and that probably tells us all we need to know. I've only been on the same sort of treatments as MikeSmith0 for a few months but I'm already beginning to wonder why I'm not yet seeing any obvious signs of improvement that medical studies would suggest I would be likely to see after a while.

Perhaps I'll see some rapid progress soon but I sure wouldn't be spending money at some poorly designed website making bold claims about overpriced supplements they offer.  

[goodluck]

I agree with ashtown.  The site is run by a DC who said he cured his own Peyronies disease.  It is a very commerical site and if you notice, the tesimonials are all written in the same style.  

Sometimes you can see remarkable testimonials on Amazon for self help books that tell you how to cure some terrible condition.  They offer high praise, are very light on details and often are written in the same style.

I have not been on that site in a few years but I was left with the feeling it was mostly hype to sell specific products.  I suspect it has not changed much.  It is more about capitalism than Practicing medacine.

Keep in mind that some people improve over time while doing nothing.  I try to keep an open mind.  He may now recommend some of the ideas backed by sound studies (Like Co-Q10 and ALC) but much of it is shot from the hip and aimed to  take advantage of desperate people.  I have not seen anything reputable that suggest iodine or castor oil works.  If you have some extra money and want to experiment on some of it, why not.  But just research what you are trying first and make sure it will not be counter productive with what you are currently doing.

The other thing that makes these boards seem disingenuous is where are all these healed people?  You would think a few would come on this board and share their wonderfull success?  I know I would. People who have Peyronies have been through alot emotionally.

Even if you have been a self centered SOB your whole life, this condidtion has a way of getting you to feel empathy and compassion for others with it or a similar condition.

So come on and share your success.  Please.  We need the moral support.

[Skjaldborg]

MikeSmith0,

I had success with pentox. I was on it for 8 months total and within weeks it got rid of the considerable pain I experienced during erection. In the last 2 years, some of the deformities have lessened and I have gained back some length, all while doing nothing. I'm not 100% what I once was but probably 90% of what I used to be size-wise.

Pentox does work, it's not a cure all but taken during the acute phase it is very beneficial. Some studies have shown that it reduces calcified plaque even after the acute phase.

Skjald

[skunkworks]

In my mind those who have little or no results from treatments that are known to be beneficial, would be well served by having a blood test to check for inflammation ie/ erythrocyte sedimentation rate(esr), C-reactive protein(CRP) and plasma viscosity(PV).

And/or changing up your diet and removing sugars and grains.  

[ashtown]

By grains I take it you just mean bread or would you include other items like porridge and rice? If so I may need to completely change my diet. Also how bad is sugar for Peyronies? Is a teaspoon here and there in coffee best avoided?

[skunkworks]

I personally have removed all grains but that is very hard for most to do, and yep I think sugar in coffee is a problem. But the main aim is to reduce insulin and avoid insulin spikes. Getting rid of wheat and processed sugar (especially soda) would be a huge step in the right direction, as would adding sprints and resistance exercise to your week.

[ashtown]

I start practically every day with a bowl of porridge and honey. We also eat quite a bit of pasta and rice, so I'd need to think how it would be practical to change all that bearing in mind the way it would interfere with the usual family cooking plans. I don't eat any real junk though.

For quite a while just walking down the road was often painful enough with Peyronies if everything wasn't in the perfect position, so I've deliberately avoided sprints, which I was doing just before all of this struck but maybe I could start looking at that again now. Somehow I like the idea of skipping with a rope better. I was also doing kettle bell swings just before this started and I've always had a lingering doubt that it might even be partially responsible for triggering the Peyronies, which is a pity because it's a great all round exercise. I'd like to go running with the dog but she's keeps jumping up in front of me!

[goodluck]

Ashtown,  It is a process to change your habits especially diet.  Have a longterm goal to reduce grains by 80% over some time frame.  You can switch to brown rice instead of white rice as it has a much lower glycemic index.

You could also try rice pasta instead of wheat pasta as I believe that has a lower index but you still want to eventually cut way back if not eliminate pasta.  You will be well served.

I personally don't think anyone is well served to drink soda.  Drink good clean water or tea.  I use to drink 2-3 cans of Coke or Pepsi a day.  I loved the stuff.  Now, I have not had a soda in years.  It just takes some time to eventually eliminate it.  If I drink fruit juice I cut it with water.  After a while your tast buds change and you don't like sweet drinks.

You are not much better of with diet soda.  The artificial sweeteners are either carcinogens or adictive.  just drink water.  That is what nature intended us to drink.

[rd]

Ashtown,  It is a process to change your habits especially diet.  Have a longterm goal to reduce grains by 80% over some time frame.  You can switch to brown rice instead of white rice as it has a much lower glycemic index.

You could also try rice pasta instead of wheat pasta as I believe that has a lower index but you still want to eventually cut way back if not eliminate pasta.  You will be well served.

I personally don't think anyone is well served to drink soda.  Drink good clean water or tea.  I use to drink 2-3 cans of Coke or Pepsi a day.  I loved the stuff.  Now, I have not had a soda in years.  It just takes some time to eventually eliminate it.  If I drink fruit juice I cut it with water.  After a while your tast buds change and you don't like sweet drinks.

You are not much better of with diet soda.  The artificial sweeteners are either carcinogens or adictive.  just drink water.  That is what nature intended us to drink.

Just a note, I have kept my diet pretty clean very little processed foods basically paleo. I have one cheat meal a week. I did however miss spaghetti but found a way to have pasta without pasta. I use spaghetti squash as a substitute for the pasta. I cut it in half put just a bit of olive oil on the inside of both halves and salt and pepper a tiny bit and bake in the oven for about 40 min, then when you take it out you scrap the inside of the spaghetti squash with a fork and get the pasta like strings hence the name spaghetti squash. I use this whenever I want something that includes pasta.  

[skunkworks]

I should add George99 has made some great posts about reducing inflammation and the effect that has on the resolution of fibrosis. One in particular was a list of studies, I will try to find it.

[Jonbinspain]

If you really can't give up Pasta for one reason or another, try Durum Wheat Pasta. It takes longer to cook, but has a low G.I. Rating.  

[Jonbinspain]

Thinking about the original question, I suppose the conundrum for me, and many others, would be this: Many of us, me included, have taken the " throw everything at it" approach. In my case, so far, I can't really say that there's been much improvement - however, my condition has not worsened, at least.
If, as I hope, I do eventually get some progress, what would I put it down to? I take Pentox, ALC, L-aginine, CoQ10, Bromelain,etc, etc. so what I'm saying is, would it be one of those individually? Or maybe a combination of all of them?  I wouldn't know.
I suppose all most of us can do is hope and pray for some relief, and worry about what to give the credit to afterwards.

[ashtown]

It's not that I have to eat pasta. It's just become a large part of our diet because we lived in Italy for over ten years, so we more or less continued after coming back to the UK. Overall the British diet is pretty unhealthy in comparison.

I think soda is one of those obvious things we need to cut out but I've only had a couple glasses a year for at least a decade. My understanding is that the sweetener used in the US is even worse than we have in Europe and this extends to many different foods. There was a program over here on TV explaining it all not so long ago.

I'm inclined to agree with Jobinspain that during the early stages in particular while we have our best chance of beating this there simply isn't enough time to try one thing at a time for a few months each and see how they work out so we throw everything at it and just hope the combination works. Just like Jobinspain if this cleared up tomorrow I wouldn't have a clue what had really helped and for that reason alone I think many of these studies need to be viewed with that in mind.

The only thing I've seen lately that made me sit up and take note was a study on tadalafil commonly known as Cialis, which made me wonder if it shouldn't be considered the key ingredient in beating Peyronies. I've only been on it for 3 months now but the results shown here over 6 months of usage are downright impressive for reducing penile scarring http://www.ncbi.nlm.nih.gov/pubmed/21324095

[james1947]

I will answer to MikeSmith0 first post.
I know this site for a long yime, I am very sorry that it was not me that started it (together with the respectfull Dr. Herazy).
I would have enough money to fly to the US in First Class, have an implant surgery, stay for two months in a 5 stars hotel until everything was working perfect.  

James

[goodluck]

When you google on Peyronies the top choices are those sites sponsored by large companies selling Serracore or Neprinol and similar products.

The Not for profit sites like this one may be on the second or third or even forth page.

People understandably want a fast and easy fix and they can fall for the aggressive marketing like that on the site referenced below.

It is hard to get the word out about this site.  After all who wants to put it on their facebook page???  The sensitive nature of the topic makes it hard to talk about and openly share with the general public.

[james1947]

I forget to say in my previous post that if I was the owner of those fast remedies www, I was spending my two months in the US in Nashville, listening to country music, drinking Wiskey and beer for fast healling (or helling) after the implant surgery.

James

[Jammer]

They all sound too good to be true.

Has ANYONE had any success with ANY supplement or drug?  I have yet to hear much.  I've been on ubiquinol, acetyl l-carnitine,  pentox, arginine, a variety of vitamins, and more than i can even remember.

Just revisited the site and saw the testimonials. The one thing I have an issue with is the pics seem professionally done verse what you may find when couples have pics taken. And why hide thier name but show thier face?  

[lgrace]

If we needed "proof" that that PDI site is a scam, for me this is it. Those pictures are grotesque. It is very rare to come across the facial picture of a man having or having had Peyronies Disease. It's not something people want to boast about.
The owner of the site would probably try to argue that nothing says that the pictures are those of the people writing the testimonies. Which just tells you what kind of site/man it is.  

[Skjaldborg]

Those photos are probably clip-art purchased by the site administrator. They are too "professional" to be on a site like this. In fact, the inclusion of photos at all is very suspicious. Any actual doctor would seek to protect the confidentiality of his patients over the marketing value of the pictures. If the product actually worked, you would not need high production values to lure in customers: your product would already have a patent, be FDA approved and be readily available in any physician's office. If this stuff worked, none of us would be here complaining about bent ding-dongs on the internet

-Skjaldborg

[funnyfarm]

Here is one of the pics.  It can be licensed for one dollar, funny.

Cute couple in 30s share a moment cover photo - 11724603 - Timeline Images

If you do a google image search you will see they are all clip art as someone pointed out.   And if someone is willing to license their picture for a dollar, I would assume you could purchase fake testimonials for that price or less.  So to answer the topic of the thread, no I do not believe these are real, although I could be wrong.

[Skjaldborg]

funnyfarm,

I tried to do the same thing, but my google-fu was too weak. You are the internet detective we need.  

It would be great if someone could design a script that could run on browsers that would point out when clip-art or other dodgy photo practices were being used. I wish I knew how to code...

-Skjald

[MikeSmith0]

I just don't understand people what could motivate someone to set up a site like this.  Not only is this site is targeting such a tiny % of the population with such a personal medical problem...I don't see who would fall for it without checking out boards like this one & looking into it further.  It's both unethical and stupid.  This should be reported to the FDA.  I am going to do it when I have a minute

"Here's How to Cure Your Peyronies Disease Plaques" (from the site) = In violation of federal law per FDA

"The FD&C Act defines drugs, in part, by their intended use, as "articles intended for use in the diagnosis, cure, mitigation, treatment, or prevention of disease" and "articles (other than food) intended to affect the structure or any function of the body of man or other animals" [FD&C Act, sec. 201(g)(1)]." per FDA site below

Is It a Cosmetic, a Drug, or Both? (Or Is It Soap?)

They need to be shut down. It's very confusing, though, on the FDA site - where to send a report to the FDA.

If FastSize got pulled off the market by the FDA (when it was actually working for some people) - this site needs to go.  I just don't know how to report them at the moment (just looked briefly - seems like it's easier to report existing drugs w/ false advertising than non-drugs).

[MikeSmith0]

Here's the message I just sent them (feel free to add your own - my "comment is awaiting moderation" which means it will be deleted):

I am a little shocked by this site.  The fact that you make statements like this is borderline illegal:

"Here's How to Cure Your Peyronies Disease Plaques"  is in violation of federal law  [FD&C Act, sec. 201(g)(1)] below

"The FD&C Act defines drugs, in part, by their intended use, as "articles intended for use in the diagnosis, cure, mitigation, treatment, or prevention of disease" and "articles (other than food) intended to affect the structure or any function of the body of man or other animals"

Is It a Cosmetic, a Drug, or Both? (Or Is It Soap?)

If you are claiming to cure a disease, where is the FDA approval?

Why are you doing this?  No men on the peyronie's disease message boards have had success with Neprinol or believe a word of this.  Success with verapamil is close to 0, and success with Trental is sporadic.  We've tried all of the erection drugs, vitamins, supplements, traction, VEDs, omega-3s and more.  Very little works.  Why are you selling snake oil to men who are already suffering immensely with this disease?  There is no proof anywhere that you have a "cure" for this.   I doubt I am speaking to anyone with the ethical wherewithal to understand the nature of what you are doing, so I am probably wasting my time... but I just wanted to let it be known that nobody on any Peyronie's message board believes a single word on your site.  Your images are stock clip art images, and your testimonials are likely 100% fake.  Taking advantage of patients with this devastating disorder is wrong & I hope the FDA shuts you down for your unsupported claims.  An alkaline diet and homeopathy have had tenuous empirical support (and that's being generous).

The one drug that MAY be approved (xiaflex / collagenase) only showed a 30-40% benefit in a multi-million dollar trial.  But, you are claiming a full cure with NO data to back it up and NO R & D expense at all?  Just eat alkalizing foods and stretch your penis?  This is unbelievable and unconscionable (and illegal).  I'd love to see how you would defend yourself...as would the rest of the Peyronie's patients who have read this.  There no empirical data, no anonymous photo data, no FDA approval, and only doctors (and patients) who say Neprinol does NOT work....and 100s of patients who have tried *everything* with no results.  Your own testimonials are BS, and the images attached do not even match the people.  They are clip art that can be licensed for $1 or (in some cases) stolen by you entirely.  For example, (URL removed for their privacy) shows up on your site - and this is a couple in TEXAS, not Kansas as you claim.  I'd tell you how I found the pic, but then you'll just find ways to avoid it in the future.  Who on earth would want their photo next to this anyway??

[Jonbinspain]

I think you've pretty much covered it. As you say, I very much doubt that what you have said will trouble the consciences of the these people.

Those who seek to profit from the suffering and or gullibility of others really are the lowest form of life.

I'll be interested to see if they even try to justify themselves.

[MikeSmith0]

The site is a total scam.  The woman & her husband who are photographed on there are PISSED that their pic is being used too.  I emailed them on the website where I found their real photo.  She said it is absolutely fake & they never saw the doctor (and know nothing about Peyronies Disease).  See proof here:

Part 1 - Peyronies Disease Help Website uses fake couples pic (I blurred it for their privacy):

imgur: the simple image sharer

Part 2 - Reply from the wife of the man who was supposedly "cured" of Peyronies Disease by "Doctor Herazy" - I found their pic on a home rental website using google image search

imgur: the simple image sharer

[funnyfarm]

Amazing they would not spend one dollar for licensed photo's but instead had to resort to stealing an innocent couples image from a real estate rental site.  The victims could very easily hire a contingency lawyer and it will cost PDI quite a bit more than a dollar just to respond to a legal complaint !   Good detective work MS !  

Jobin we are suffering but not gullible !

Lets see if they remove the picture ?

[funnyfarm]

The picture of the couple  with  the caption "Got my life back" also appears to be hijacked:

Bios | Live the good life |

[Jonbinspain]

Funny farm;

If you read my comment again, you will see that in no way was I inferring that members of this forum are especially gullible. It was a general comment on the morals (or lack of) and motivations of people like this "doctor"

[IhatePD]

When I first found out that I had Peyronies Disease in August 2012, I searched the internet and found the Peyronies Disease Institute as well as other sites selling various cures.  The traction devices were not very appealing and surgery was something I wouldn't even consider at that time. So, I tried all the topical and natural oral solutions on the PDI site since my urologist had the wait and see and try vitamin E approach.

Six months later, my Peyronies Disease progressed and I found this forum. Thank God! I found another urologist from the recommended list and now I am on Pentox, daily Cialis, L Arginine, Ubiquinol and traction and feel as if I am now really fighting this disease.

After reading for one hour on this site, I felt as if I knew more about Peyronies Disease than first urologist. He is good at everthing else but like most urologists, he was really are not up to date on Peyronies Disease.

I am not happy about wasting money on the PDI website "cures" but it really pisses me off that I wasted six months while my disease progressed (partially my first urologist's fault as well). I wish I was on the Pentox immediately along with the other recommendations from my Peyronies Disease urologist (above).

Snake oil still doesn't cure anything? What a surprise!

[funnyfarm]

Thanks Jobin, I understand.  It is ashame PDI ranks highly in search results as it sends guys on a path that leads to frustration and empty wallets.  It took me a year to find this forum and as IhatePD said it was a blessing, and helps me appreciate it even more.  Good luck guys.  

[MikeSmith0]

Yeah, it does rank high... that's how I found it & why I posted about it in December.  I knew it sounded too good to be true, but in the 1% chance one of you knew about it I wanted to ask.

The guy who runs the site just deleted all of the photos off the testimonials page...looks like he's reading.   He has an account here and posted here before.  It sounds like he really believes in what he does...though, the fake pics grossly undermine any of that.

History really repeats itself.  3 years ago it was other board members that got pissed over this site.  He actually did reply.  See below:

Alternative Treatments for Peyronie's Disease - Peyronies Society Forums [Page 2]

His youtube video has 390,000 views so that's a LOT of people who at least saw the site.  It's interesting that not one person (credible, like an existing poster) has said anything positive about the site.

He does say he doesn't like traction but is a fan of "other stretching" (described only in his book of course for a fee).  I have had zero success with traction...so... I'd be curious what the other stretching is - but I'd prefer to hear from other patients before venturing into it.

[funnyfarm]

Yes all the pictures are down now.  That is good, but also confirms his lack of character by confirming everything we have discussed.   In all honesty Mike I think your efforts would be better focused elsewhere.  Personally I have no motivation to visit the site again.  I think there may be alternative treatments that help some guys, in some situations, but I would definitely look for someone with more credibility and higher ethics to guide you.

[james1947]

My wife just bought a small bottle of turtle oil here in Bali (not the famous snake oil). At $10 is more than 10% of many people monthly income here.
They say that is excellent for wounds healling.
I may try it for Peyronies  
It is cheaper than Dr. Herazy's oil

James

[MikeSmith0]

lol turtle oil sounds good.

I wish pentox didn't cause sleep problems w/ me... and stomach problems.  If anything, that's the only thing I have seen a consistent effect from (with others - I never stayed on it long enough).

[IhatePD]

I read his stretching book and what he describes is using a very, very light stretching on the plaque (against the curve), using only the amount of pressure you would use to rub you eyeball.  His theory is that you want to sneak up on the plaque with light pressure as he believes that heavy pressure will cause the plaque to respond by producing more plaque.

This is completely the opposite of using the traction devices recommended by many of the urologists aggressively treating Peyronies Disease today.

[james1947]

I am not a native English speaker, so can someone write what the shortenings are in:
Theodore R. Herazy, DC, LAc, Dipl. Ac.
It will give us some more light on the subject.
As I know, shortening for Medical Doctor is MD.

James

[funnyfarm]

James, the abbreviations indicate he is an acupuncturist and chiropractor.

[MikeSmith0]

James, the abbreviations indicate he is an acupuncturist and chiropractor.

Oh no wonder... I was very confused why a MD would run this site.  I didn't realize he wasn't an MD.  His profile was clear that he wasn't an MD but I didn't realize it:  "Theodore R. Herazy has been in private practice for over 40 years, holding two separate licenses - as a chiropractic physician and a board-certified acupuncturist. He has taught acupuncture on the post-graduate level for several years, and worked in multi-disciplinary medical holistic practices for most of his career. It was while he was working in the world-famous Pioneer Medical Clinic that he developed Peyronie's disease. Since no effective medical treatment for Peyronie's disease exists, he worked with his medical colleagues to develop an Alternative Medicine treatment program to treat his problem. Thus began an educational and personal odyssey that eventually resulted in Dr. Herazy starting the Peyronie's Disease Institute and authoring two books about Peyronies Disease."

[james1947]

Funnyfarm and MikeSmith0, thanks for the clarifications.
In any case I will not buy his books and make his treatment, especially after I bought the book ($25) of the doctor that cured himself from prostate cancer without medications or surgery and died after a few years from prostate cancer.  

James