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wounded duck

Hello,
I am new to this site, but already am very impressed by the collection of knowledge and first hand data from a lot of the posts.  I am a 46 yr old male, married with two small kids, who has had Peyronies Disease for about 18 months.  I have what seems like a typical story of going to a good urologist at the time who diagnosed it as Peyronies Disease, told me it was "self limiting", there was nothing I needed to do, and it would likely heal itself, ugggh!

Back then it was only pain, now I can feel at least three scars/nodules, and have curvature in two points at the base and top.  I got serious about this three months ago as it had progressed and gotten worse.  I have read alot--this forum, Amda, articles by Dr. Hellstrom and Levine and many individual sites like PDI (Ted Herazy), Sexual Healthy Man (the noted "contractor" John Parks) and My Peyronies. I have been trying a bunch of things simultaneously as long as they seemed not harmful and some seemed to have scientific support--Ubiquinol, Acetyl L-Carnitine, L-Arginine, and topical Dmso/Msm/Vit-E/Potassium Iodine/Copper peptide serum, and considering traction.  I am unfortunately getting an allergic reaction to Pentox which seems to be proven effective.  

I have been waiting to see a specialist to get some systematic advice on all the treatment options including traction, injections and oral/topical things and finally had an appointment with Dr. Mulhall in nyc last week after waiting a couple months.  Unfortunately he would not go through any treatment options with me until I come back to have an injection to force an erection so he can measure it.  He also generally responded that since this is stable/chronic at this pt, there is no urgency and nothing I can really do to change it, he did promise to go my questions and options after I do the erection injection.

So, here goes with my three questions:

a) Has anyone done an erection injection test, is it worth doing and is there a risk (it seems totally unnecessary to me since I do not have ED and I know what the curve looks like erect)?  I have done 20-30 hours of reading/research and just want an hour with an expert to systematically go through the different options.

b) Are the main options that have some science behind them (Pentox, ALC, L-Arginine, cialis,  traction, etc.) effective on chronic/stable peyronies or only if you catch it early/acute?

c) Finally, I read some member comments that the PDI/Herazy site is a "hoax" and wasted people's money and time.  Is there a consensus on what part of his stuff/site is the hoax/ineffective part (is it the topicals, enzymes, or vit-e)?  (He does advocate Acetyl L-Carnitine which seems to have some soft science behind it).

Apologies in advance for such a long email, and really appreciate any responses or info anyone is willing to share with me.  Thanks
 

George999



Quote from: wounded duck on August 17, 2013, 02:14:38 PM

a) Has anyone done an erection injection test, is it worth doing and is there a risk (it seems totally unnecessary to me since I do not have ED and I know what the curve looks like erect)?  I have done 20-30 hours of reading/research and just want an hour with an expert to systematically go through the different options.


A much safer approach is just to take pictures of a naturally induced erection and take them to the doctor.  Dr Lue does it that way and so do others.  But Mulhall has his own approach.  I suggest you read up on reviews of Dr Mulhall posted in the Urologists and Other Doctors topic.


Quote from: wounded duck on August 17, 2013, 02:14:38 PM

b) Are the main options that have some science behind them (Pentox, ALC, L-Arginine, cialis,  traction, etc.) effective on chronic/stable peyronies or only if you catch it early/acute?


A number of us here including myself have found Pentox and CoQ10 useful in the chronic/stable phase.  Many have also found VED useful in chronic/stable phase.  There are even published case studies indicating calcifications corrected in the chronic/stable phase by Pentoxifylline.  When doctors tell you otherwise, it is not science, it is more like religion, it is what they believe.  First you go to them early on and they tell you wait and see, then you go back to them and they tell its too late.  Its a cop out on the doctor's part.  They don't like to deal with it unless the solution is surgical.


Quote from: wounded duck on August 17, 2013, 02:14:38 PM

c) Finally, I read some member comments that the PDI/Herazy site is a "hoax" and wasted people's money and time.  Is there a consensus on what part of his stuff/site is the hoax/ineffective part (is it the topicals, enzymes, or vit-e)?  (He does advocate Acetyl L-Carnitine which seems to have some soft science behind it).


The Herazy site is not a hoax, but some of the treatments he is pushing are useless and he is making plenty of money off of them.  Other treatments on his site are marginally effective and he is selling them at a fair and reasonable price.  But Pentox, CoQ10 and VED are the go to first line treatments and he is NOT offering any of those that I know of.  I would suggest staying clear of Herazy.  I'm not prepared to label him a "quack" but he is not going to get you anywhere meaningful with the stuff he is offering.

wounded duck

George-
Thx very much for your thoughts.  I actually offered to bring mulhall a photo and he refused. I read the reviews on the forum you suggested (very helpful) and my experience was similar--I spent most of the time with his residents, he came in for 5-10mins to examine but didn't want to take questions, has an assembly line/factory and wants to push you through it (nxt step injection/erection exam, then i'm sure it will be VI injections from his nurse practitioner, doesn't have time to answer quests and help patients make an individual plan).  I did slip a few questions in on pentox, ubiquinol, alc, and he quickly said coq-10 data was falsified in the Iranian study, only study on alc had marginal improvement over tamoflex, and the rat model that pentox and l-arg helped studied effect on penile scarring which are very different than plaques.  This seems at odds with what other top Peyronies Disease docs believe and what is anecdotally working for PDS members.

Thx for thoughts that pentox, ubiquinol, ved helping chronic condition. Do you or others have a view on VED versus Traction, i have read alot of posts today on positive experience with both?

Also, I found the long list of md's around country, I may try to set up a call with Dr. Levine or Hellstrom to to review options, see if they would take the time if let them name their price to do that kind of consultation/conversation, if you could speak with any doc in country who would u say the top 2-3 are (would u include Dr. Lue or others)?

 

inkhorn

Duck- Sorry you ended up with a "broke dick" doctor, as many of us has. I use both traction and VED to compliment my treatment. Regards Inkhorn

George999

Personally I consider Drs Lue and Levine to be the top two Peyronie's docs in the USA, but that is just my personal opinion.  Dr Lue really pushes Pentox because that represents his prime area of expertise, Dr Levine is probably more open to other treatments.  Additionally, there are an increasing number of small town general urologists, along with urban medical center urologists, who are very up to date on Peyronie's and very willing to prescribe Pentox and VED/Traction when indicated and generally able to accomplish as much or more than either Dr Lue or Dr Levine.  The problem is in finding them.  But when you call a uro for an appoint, just so you don't waste your precious time, it would be a good idea to check first whether that doc is comfortable prescribing Pentox and working with patients using VEDs/Traction Devices, if not, don't make an appointment, move on to another doctor.

PS - I am personally very suspicious of docs who push a single proprietary treatment like VI or Potaba.  I just can't help but wonder what sort of perks they are getting in return from the companies behind those products.  I see a lot of not so hidden conflict of interest in the medical profession these days.  I really don't think it is malicious on the part of the docs, but I certainly do feel that it clouds their judgement and causes them to make unprofessional statements about other potential treatments in order to sell the patient on their proprietary solution.  There is an awful lot of potential to make money in medicine these days and the making of that money is not always in the patient's best interest.  Again, those are just my own private opinions as a patient and for the sake of disclosure, I am not a medical doctor.

wounded duck

Gerorge thanks.  I had a phone conversation with Dr. Lue and he was extremely helpful.  I asked a question on a prior post from another member and can't locate it and I think you may have answered--the question is: has anyone seen positive results from any of these methods (Pentox, ubiquinol, arginine, alc, traction/ved) for chronic (2 yrs old) peyronie's?  

According to Dr. Lue (who is a big fan of Pentox), Pentox will only prevent new scar tissue from forming by clearing out inflammation and will also dissolve calcification, but it won't help existing scar tissue and won't help curvature.  I think you mentioned that you and other members have had success with pentox/ubiquinol/ved even with chronic peyronie's, what kind of results have you seen?  Would appreciate comments from any members.  Thanks


btw,  I heard that they are expecting a decision on Xiaflex from the FDA sept 8th.  

kuaka

Do you play one on TV?

Quote from: George999 on August 18, 2013, 10:28:33 PM
...for the sake of disclosure, I am not a medical doctor.

My opinion of the medical profession is summed up by the concept of "practice" verses "performance".  I don't pay professional athletes or musicians to practice, why should I pay a Dr. or Lawyer to practice?