ORAL TREATMENTS - GENERAL - Vitamins, Prescriptions , Herbs, Supplements

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Freddie

Go to broken penis, and peyronies on his site- Im not against the pump, Ive said that Dr.Lin does recomend to those only if you cant get a natural erection. And than he recomends Cyclic pumping 3min, let go 3min let go a few times a day to get fresh blood for healing. Its not what you do sometimes its HOW you do it. Freddie

mikesb

Freddie, how old are you anyway? I thought I saw a reference in one of your posts that said 17? If that is so, there are gentlemen on this site that have been dealing with Peyronies for longer than you have been alive. Please, listen to them. They are wise.

Iceman

thx guys - as always I will follow your advice - this forum is awesome and as I have said before :  god help those poor bastards who had to suffer like I did,  without the help and aid of the forum and the people on it...
Prior to this forum i was a slave to neprinol and pain - now my pain is gone and the curve has diminished somewhat -  

ComeBacKid

Iceman,

I may have missed something?  What treatments did you start since coming to the forum that helped you?  We always like to hear positive stories, and any effective treatments, including side effects.

Comebackid

Freddie

Mike, Im 32. I am paying attention to the posts.  Trying to not be so stubborn w my opinions. For pain, I found that Cortizone-10 works really good, followed by a warm towel wrap (105 degrees) It softens scars nice. Any agree? Freddie  Also, again I apologize for my rude and ignorant and stubborn behavior the last 2 days. And Hawk , sorry for calling you a knucklehead- you are wise, and I respect your site and Im checking out the methods you guys have   Night,  Freddie

Hitman


Hawk

Quote from: Freddie on February 25, 2009, 01:25:53 AM
Hawk , sorry for calling you a knucklehead- you are wise, and I respect your site and Im checking out the methods you guys have   Night,  Freddie

:) Freddie, I accept that apology more because you need to make it than because I need to hear it.  That comment literally bothered me least out of most of the things that you said.  Our forum is here in part because we oppose censorship.  We do not have to agree with you to welcome you to the forum.

I am sincere when I say that if you intend to stay I suggest you do a little background reading rather than starting your interactions here with assumptions.  It does not have to be read all at once but the essentials to know what we share and what we know and do not know cannot be understood without reading:

The forum rules under Read This First about censorship, using quotes, personal attacks, etc.  Do not assume you know what the rules are: https://www.peyroniesforum.net/index.php/topic,6.0.html

The Newly Diagnosed Highlights that are a condensed read only (no posting) version of the forum https://www.peyroniesforum.net/index.php/board,18.0.html

Finally, Our Resource Library that has educational and resource material including some interesting studies, theories, diagrams, and treatment protocols. https://www.peyroniesforum.net/index.php/board,10.0.html

(all of these areas are for reading and not posting).  Posting is done on this our main forum or in the Off Topic area.  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

UK

Post Removed for posting copy right material from another site in its entirety without approval of the owners of that material.

MrDenberg

Hello,
    From your guys experience is a bent penis while flaccid something to be concerned about? I believe it is the result of a fracture i sustained during intercourse about 10 years ago. I remember a distinct popping sound at the time but did not go for any treatment. I am now 40 years old.  When erect there is no bend.  The only other strange thing I get is twitching in the penis once and awhile but there is no pain.  Is this something I should begin to treat or just leave it alone as long as I can get and erection and it is straight.

thanks

jon

Quote from: Tim468 on February 24, 2009, 04:35:19 PM
A drop off in the amount of semen suggests reduced prostatic function, and that is often secondary to decreased testicular production of testosterone. A finding of reduced production of semen, and smaller testes, should prompt an evaluation.

Tim
as an additional point, it could also be a symptom of retrograde ejaculation caused by the bladder neck not sealing completely, for a number of reasons including neuropathy

Tim468

Mr. Denberg,

Other than peeing onto the floor instead of into the toilet, I don't think a penis that bends when flaccid is a problem, if it is straight when erect.

That said, something happened, and it might be worth it to read up here about how to keep a penis healthy.

For me, I would avoid rough sex, not take propecia, not use a VED to extreme pressures or otherwise do anything that might damage my penis.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Freddie

 Hi Hawk-ok- what Id like to do is have a post somewhere maybe ubder "new or controversal or whatever theory" of how to cure this. I would explain which products I used from GNC so you and everyone doesnt think Im trying to sell for Dr. Lin, and most important, the concept of how to soften and dissolve scar. Yes, everything I learned was from Actionlove.com, and although it seems like a quacky site site to everyone here, the CONCEPT is excellent. The concept is really basic- 1. restore hormones and circulation to get a natural full erection(which would require detoxing liver to produce hormone exchanges) 2. Lightly massage erection to induce prostaglandin E-1 and E-3, and nitrous oxide for healing and 3. Apply a cream(which can be made from peppermint and a few other ingrediants) and massage penis a few times a day, and than  wrap in damp towel (100-110 degrees) to help soften scar. Im not saying it could help everyone, and or heal everyone fully, but I really do believe from my experience that this is the way to go. Its been proven that lightly massaging scars promotes healing. First you have to Soften scar, which takes 3-12 months, and than the scar begins to Dissolve(sort of like a wound or cut on your arm-Sort of- Freddie

Hawk

Quote from: Freddie on February 25, 2009, 07:45:31 PM
Its been proven that lightly massaging scars promotes healing. First you have to Soften scar, which takes 3-12 months, and than the scar begins to Dissolve(sort of like a wound or cut on your arm-Sort of- Freddie

Are you suggesting that dermal scars can be eliminated with this method.  In other words I can get rid of my visible scars like this???  You say it has been proven.  Do you mean there is some evidence or "proven"?  Who proved it.  Quote the study or the accepted medical practice.

Freddie,

Why don't you take one point at a time, like establishing studies or proof that massaging an erection induces prostaglandin E-1 and E-3.  I can tell you right now that no one here will accept that on a real MDs word much less on the word of an engineer's who is trying to sell something.  Either you expect to show objective scientific evidence that these things actually cause the physiological response you say they do or you want us to have faith in your treatment.

Post about message under Alternative Treatments but again, unless you show objective evidence no one will by into your testimonial.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Freddie

Hawk ok - you can soften and dissolve fibrosis- yes!- visible scars- you would have to send Lin a pic I guess or really explain your condition to him about the visible scars. I dont know how much you can dissolve depending on the severity- but yes Hawk- the key is heat- thats why he made that cream- but you could also use I believe peppermint extract with alcohol, and dhea cream and massage to bring the heat and wrap with warm towel. That gets it from the outside and the whole part about the erections and balooning gets it from the inside. You need to feed your penis hormones, dhea, nutrinents and amino acids with erections to soften and dissolve scars. You can either at least improve your condition and or heal up to 95%. For the tenth time- - if you are sceptical- than buy the products elsewhere, ok. But use his methods.  Again Hawk, I know how tough this whole thing is, I have studied that site for three straight years. The balooning is for real, and is a big part in healing. But first you need to boost your test which may take a while to get an erection without erection drug or pump to begin healing. When I was at my worst, I felt completely hopeless, but US doctors offered no real solutions, except vit E, and never really explained everything. Thats what may have driven me the most batty- not knowing what the hell was going on. The reson I stuck to that site was because the more you explore it, the more answers you get- even if sometimes its not what you want to hear.  As far as all the scientific proof and studies, he does have many links on his site. You need to get a natural erection because thats when you know you have the correct hormones to give the special penile tissues the elasticity. Thats the signal that you can produce your own Prostaglandins. Also, DO NOT get prostaglandin E1 injections for erections- injections into penis will make peyronies worse. Your body has to recooperate and detox and make its own. You should also check  out cupping sets to give yourself deep tissue massage on muscles and joints. If you dont buy from Lin, go to Amazon.com- and type in I believe cupping. The stress hormone from the stress we go through and the inflamatory hormone from the scars travels throughout your body and gives you conjested muscles and stiffness in back, shoulders, neck. As far as those that had prostate surgery, I would write Lin, because I just dont know if they can produce the prostaglandins that you need, but he may offer a solution.  Freddie

G.

Freddie,

I'm hesitant to wade into this topic, but there are a couple of things you're repeatedly suggesting, that strike me as not good ideas:

Cortisone cream - in a couple of posts, you suggest applying Cortizone 10 and then putting a warm towel over that (in one post you say it's good for pain, and in another post you say it's good for dissolving scars). I have no medical expertise, but I just can't image that it's safe to do that long-term - first of all, the skin on the shaft is very thin so you're going to absorb more cortisone through it than through other parts of the body, and applying a warm towel over that is just going to amplify the absorption. As far as I know, you don't want to be taking cortisone into your body long-term, unless you absolutely have to - and probably especially dangerous to use this long-term on your penis.  It would be worth your looking into the safety of this practice, before you suggest it to folks here.

DHEA:  again I'm not an expert, but from what I've read, it's a hormone precursor, and not at all safe to take especially long-term.  My understanding is that taking DHEA shuts down your body's own production of essential pre-hormones.  Maybe OK to do under supervision of a doctor, but to just broadly recommend using it here, without medical supervision, this could be dangerous, and doesn't reflect well on your judgment.

Lastly, you emphasize that you can't heal Peyronie's without regular erections, and also you shouldn't ejaculate too often.  Well, by those criteria, I should be healed of Peyronie's already, but I'm not:  I'm 53, but in super physical condition, so I'm lucky enough to still get plenty of erections naturally - probably get them every night while sleeping.  And due to schedule and geographic issues, my girlfriend and I only get together about twice a week, so I'm definitely not over-ejaculating. (and at 53, I don't feel the need to 'blow a load' several times a week, like I did when I was younger - am happy to mostly save it for my gf)  So I'm definitely getting lots of circulation, hormones, prostaglandin, whatever, to my penis every day but guess what? - it's had no impact on my peyronie's.  It hasn't gotten worse in 3 years, but neither has it gotten better. (I'm currently in the Xiaflex trial, but not seen any help from that so far.)

Don't want to get into any long debate here, but a number of the things you're tossing out here sound either dangerous or just besides the point.

G.

Freddie

Hey G, Hows it going  Ok Cortisone I did say you should take day off-apply one time a day 3 days- one day off to avoid thinning tissue- I use it only when irratated or pain occurs. Dhea levels drop after 25, and every study has reported that it is a supplement and your body doesnt get addicted. I use 25mg before balooning, and 25mg bedtime for nightime erection support.Now for you- you obviously dont need it for strong erection- good news for you! you are a healthy one! You should practice the balooning method on his site, and when penis is balooned, very gently massage scars, very gently for 5 minutes a day, and than wrap in warm damp towel about105 degrees ok. Check out his site. When you get erection, you massage base of penis near scotum and you should feel a test burst shoot up your penis- thats balooning practice 10 min a day with massage. If you dont feel test burst, take 50 mg dhea hour before balooning to do it. Than always take lowest dhea you can. ok.  Freddie

Freddie

To G and all- Remember, I am a student of Dr. Lin and his site from reading many of his links on his site, and writing him, and calling him. His site and advice has helped me a great deal. However, I dont want to be responsible for answering for him. Check out his site, write him if you want, ok. Now that Im thinking, maybe he told me 2 days on cortisone- 1 day off cycle- Im not perfect, and Im not a brain surgeon, so I too struggle understanding much of what he says.  But if you read my interpretation of my experiences following his advice, its not that difficult the once you get the hang of it. Ive read many of the posts here, and it seems some guys get going on the right track, but because the right track does take long, they go to another track. I am no better. Just a little bit more lucky, only because I was too afraid to try the traction, ved, injections. And like I said, his site was at least answering my questions that were driving me insane, so I took a leep and went for it on a long shot. Sure enough, although Im still not perfect, and I hope to be one day or at least close, I can tell you with confidence that his advice is the right advice, ok. So like I said, if you are sceptical, than buy your products elsewhere but get to that site. It will still be a long road, but its the best chance you have. Through my 3 years battling this(even though I had it longer) I have visited this site, but was scared away by some of the ways- traction, ved, injections. I doubted Lin's site much, but like I said, it drew me in because I kept finding answers there that made sense, and his site didnt present any dangerous methods to healing, and warned against what not to do. So now I come to you all as a caring, helping man, not a scam or marketer for Lin, but as someone who isnt a selfish dog, in a dog eat dog world because I do care about others suffering and feel their pain, especially going through it myself. I feel confident enough with my progress to tell you guys about his site and advice.  And I am very sorry, and pray for anyone who learns that they may not be able to heal, if their condition is that severe.  Like I said, I myself even though Im doing good, may not get that 25%, but I really do feel and pray that I will. And I do pray for all suffering from all  problems like this every night, - because I know now how tough it is.  But I think in the end, its always better to know the truth, than not to know the truth.  Even if the truth isnt what you want to hear, at least you could accept, and move on, and find other gratifying things to fill in the void.  Just a few extra notes- when you learn the balooning and light massage- massage scar very lighly, and Dont massage more than 10 min a day-dont overmassage, because thats too much inflamatory hormone. Also after you get erection and baloon, stand up and squeeze butt cheeks together (please dont ask lol ;D) it helps control premature ejac, which is the most difficult task. To start go to Actionlove.com- go to premature ejac, peyronies, penile damage, penile pains, and youll see links everywhere for balooning. Visit other categories as well. and learn.  Remember, everyones different- but in general, most men need to limit ejac to 2 times a week to preserve hormones so they are ready to baloon when they massage. Alright guys- if you want, check it out, and good luck. But please dont keep writing to me with all this debating and not check out the site. I really dont have that much free time to spend on here for a while(2 jobs starting next week)  God Bless! Freddie

Attica!

Hawk,
  I am not for censoring anyone unless of course for ad hominen or profane attacks. But our boy Freddie is just a shill for for Lin and his voodoo. He spouts drivel. I bet he is actually Lin himself. If he wants to advertise for Lin, make him pay advertisement rates.
   Enough!

Hawk

Freddie, read this carefully because patience is wearing thin.  You only have so many chances to respond to the questions and you have done nothing but avoid them.

I have heard about enough of Engineer Linn who you unethically refer to as Dr.  Stop spamming the forum with his name.  If you have a treatment mention it.  If you have objective proof state it.  If you continue to expect us to accept all this on faith then post it under religion in the Off Topic area of the forum and stop cluttering the main forum with faith based healing strategies.

Just as I expected, you have done everything to side-step my questions.  I do not think that was an accident.  Again, you said it is "a proven fact that scar tissue dissolves from message" yet when I asked for the clinical studies or widely accepted treatment protocols of that proof you posted 3 posts with pages of more claims without a shred of evidence much less proof.  Answer the question!  It is beginning to sound like you either don't even understand the definition of those words (proof, evidence) or you deliberately sneak to avoid backing up your statements with any objective evidence.  Either of those make you totally unreliable and untrustworthy as a source of information.

I have about 20 of these questions but for now we will try just two!

I repeat, where do you find the commonly accepted "proof" that massage dissolves scar tissue even on the arm?  Who proved it.  Quote the study or the accepted medical practice.

Where is the objective proof or even some possible objective evidence that massaging an erection "induces prostaglandin E-1 and E-3."  Either you expect to show objective scientific evidence that these things actually cause the physiological response you say they do or you want us to accept your treatments based on faith.  That is unacceptable.

Don't just clutter the forum by repeating the same type of thing you have already said ten times.

It is time to put up or shut-up as the saying goes.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Jonny13

Hi everyone,
I was considering taking ginkgo biloba since I have suffered from some ED problems since I performed those exercises 3 years ago.  I am currently taking pentox on the recommendation of a urologist.  (I'm 24).  I have very rare morning erections, and when I do they are of very low quality...much lower quality and number than prior to the exercises.

1.  Would you recommend this ginkgo for ED and numbness problems, or is the pentox with occasional cialis when I have a problem obtaining an erection sufficient?

2. Are there dangers in combining ginkgo and pentox?

3.  If so, how much ginkgo would you recommend for daily use?

4.  Any other advice greatly appreciated.  I'm learning...

George999

Jon,  Here are some thoughts:

1)  I used Ginkgo for some time and found it not very useful.  I still have a full unopened bottle.  I tried different brands and different formulations.  I found no benefit for Peyronie's and as far as ED goes, I was also using Horny Goat Weed, an analog of Cialis and Viagra and I can tell you that Ginkgo DOES NOT do what Cialis does.

2)  Both Pentoxifylline and Ginkgo are blood thinners.  Therefore there are POTENTIAL risks to using both Pentox and Ginkgo concurrently.  That does not mean you can't do it.  You just have to be aware of the risk of combining blood thinners.  Vitamin E is also a blood thinner so it is easy for guys with Peyronie's to get to many blood thinners going in concert and risk bleeding issues.

3)  How much Ginkgo you can use safely depends on how many other blood thinners you are using and also your personal sensitivity to them.  I ALWAYS recommend starting at the lowest does and NEVER exceeding the label recommendations unless you REALLY know what you are doing and understand the risks.

4)  I certainly think their are better options for dealing with ED.  Cialis of course would be numero uno.  Arginine would also be helpful.  And long term, of course, I believe that getting Vitamin D blood levels in order would be beneficial.  Other long term strategies are diet and exercise focused on losing any excess waist circumference.  All of these long term strategies may seem off topic considering how this ED issue came about in your case, but actually they promote healthy healing which needs to be your long term focus.  Short term, of course, nothing beats the old PAV strategy.  PAV (PENTOX, ARGININE, VIAGRA) was Dr Lue's original strategy against Peyronie's and I believe the AV still have value along with the P.  Incidentally, PAV not only is useful in terms of stopping Peyronie's, there is also a Case Study demonstrating its usefulness in dealing with Corporal Fibrosis which I find VERY interesting.  - George

Freddie

Alright, I did my best to share with you what worked for me. Im sorry you are not interested . This time I will go for good.  I wish everyone one the best. And no, I am not Dr. Lin, or a shill for Dr. Lin. God Bless!Freddie

Tim468

I would have been happy with indentation and paragraph returns...

Editorially, Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

Hawk

Apparently Freddie preferred leaving to answering a direct question.  Seemed like a simple request but clearly not simple enough.  He is obviously more at home on a forum that accepts any claim without, evidence, clinical studies, or rational theory.

This is the second time he has deleted his id.  This means he orphaned posts under both registrations and they are now listed as "guest posts".  His abuse and cluttering of this forum have been tolerated but not appreciated.

I am interested in member opinion on deleting these posts.  Please respond by voting in this poll. https://www.peyroniesforum.net/index.php/topic,792.msg18534.html#msg18534

Poll is at the top of the page on this link.  Voting is anonymous.  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Jonny13

THank you George, that was very helpful.  Now to straighten my mind and thoughts out...

despise

Quote from: mikesb on February 24, 2009, 07:47:59 PM
Freddie, how old are you anyway? I thought I saw a reference in one of your posts that said 17? If that is so, there are gentlemen on this site that have been dealing with Peyronies for longer than you have been alive. Please, listen to them. They are wise.

thats me dude. im sorry i agree that site is a sham but about you guys argueing about what cause peyronies. all i have to say is that i caused mine by masterbation. im not saying everyone got it like that or anything im just stating a simple fact between me and my penis. so are you guys done argueing? can we talk about vitamins damnit? ok so what can i take other then what im taking to be beneficial? fish oil? im taking vitamin d 1000 vitamin e and mk7. can someone please tell me what else i should be taking that could be beneficial? im in hell here guys help would be appreciated. and yes george i will keep taking vitamin d.

Exile999

Im actually very new at this and im also rather shy about it. However, I'm not exactly sure if I even have this disease, but i believe I do. I plan to visit my student health center in my college to see what they think about it tomorrow, but as for now I have no idea what to really do. I'm actually 18 years old and I know that most people my age do not suffer from this. I know that everyone says that I will need to see a urologist but I'm actually sorta scared. However to explain my situation first:

I'm not exactly sure how I received this bump on the right side of my penis, but its there. When I push on it its squishy feeling. The result, it bends to the left. I didn't know hard it was to have sex until I actually tried it. It wasn't painful, but it was simply difficult to...well go all the way in. I honestly didnt even really notice too much about it until my girlfriend pointed it out. In addition I also found it pretty hard to maintain an erection (ED?) when I was standing, however when i was sitting down or lying down I would be able to maintain it. It seemed very bizarre to me.

So...first things first, I will actually try to get a hold of a doctor, however I also want to know what everyone thinks will work. Creams, medication, etc...? I've actually heard that vitamin E works, however I guess eating a lot of spinach doesnt really help the causes x_x. Thank you everyone for the advice in advance!

LWillisjr

Exile999,
What you described so far doesn't seem enough to me to diagnose Peyronie's Disease. The bump being squishy implies to me you have a pooling of fluid, maybe a bruise. You stated this causes curvature, do you mean while flacid, or while erect? And how much of a curvature would you estimate?

You are on the right track by seeing a doctor. I remember at your age myself being nervous about dropping my pants for any doctor. I still don't like doing for my annual physical. But you do need to get a professional opinion on your symptoms. It could quite possibly be something minor that will absolve and go away on its own. I would be hesitant to give you any advice until we know for sure what we are dealing with.

You will for sure want to make an appointment with a urologist and not waste time with the campus med center. I'm not dissing the campus center, but unless you are at a medical university I don't think any of them will have a proper urologist on staff.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Exile999

hmm...i visited the med center doctor today and all she could say was that it wasn't anything abnormal just difference in structure.

As to answer your question willis, this squishyness actually causes a curvature both while being flaccid as well as erect, even more curved when erect. Now is the bump supposed to be hard (if i may ask under this topic?)

Hawk

"Is the bump supposed to be hard?"

I don't know how to answer that.  It could be a natural vein or a golf ball sized tumor.  There is much about your description that is just unclear.  When did you first develop the curve?  It seems strange you would fail to notice something on your own penis that your girlfriend would notice.  Most people notice minute details about their body that others never notice.  Likely your girl friend knows which of her breasts is the largest.  You probably have a 50/50 guess.

Can you tell me what the credentials were of this person at the student center that examined you?  Was it a General Practitioner (MD), Urologist (MD), or possibly a nurse or a physicians assistant?

I could use a bit of my off-beat humor here but I don't want you to think I do not take this seriously because I do.

Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Tim468

IT is not hard, it is impossible, to figure out what is going on with your penis. Partly, as a brand new member of the site, much of the language we use here is going to be new to you, but even the idea that you have Peyronie's is new, and so there is much you have to learn. You could not walk into a class in archeology and ace the final without first learning the stuff taught there.

I suggest that you read the "Child Boards" here to catch up on the various things we talk about.

A couple of questions:

Has it always been like this?
Is it severe?
Does it hurt?
Is there a change in texture, shape or color of the skin over the affected area?

I can think of lots of other questions.

I am wondering if the "bump" on the right side is normal penis tissue and the abnormal tissue is on the left, since you curve left. Sometimes if the tunica is taut, fibrotic or dense, then it will feel woody or abnormal, but what it will not feel is "fleshy" or squishy. On the other hand, the normal penile erectile tissue on the other side may appear to pooch out and feel like a lump, when contrasted to the less compliant left side. Just a theory, but as others have suggested, go to a urologist, not a campus clinic doc in the box.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

George999

I have another suggestion for Exile.  That is this.  If you seek medical attention and what the doctor or nurse or whatever is telling you doesn't make sense or explain things for you, go back and seek a further explanation.  If that doesn't clear things up, seek a second opinion.  Don't just get stuck and don't just go and try to get an answer on the Internet.  The Internet and forums like this will be totally USELESS to you UNLESS you have a diagnosis.  That is what doctor's are for.  Most of us ARE NOT doctors and even of those who are, most are not urologists.  And even if I were a Peyronie's specialist of top caliber, I COULD NOT tell you anything useful without examining you and very likely doing some in office tests.  So, even if the doc you have already seen is a urologist, if you haven't gotten a satisfactory answer, which you obviously haven't, then either GET ONE or GO TO ANOTHER DOCTOR.  Can we make it anymore simple than that?   I think all of us are dancing around the same bush here and it is time for you to pay attention and do yourself a favor by doing the right thing.  OK?  - George

Jonny13

Not sure if this post is in the right place so go ahead and move it if need be.  

This is a few days late, but I strongly vote to leave Freddie's posts up.  As a newbie to the disease, I was looking everywhere, including on that ridiculous "Mr." Lin site (I thought it is illegal to use the term doctor if the use misleads people into thinking it is a medical degree.  THis is the case with the JD, so maybe the PhD. doesn't hold here).

Well, the truth is I was skeptical, but it wasn't until I came here where I read Freddie's posts and your intelligent responses before I realized that his site is probably little more than hocus pocus.  If Freddie's comments and your responses were not up, in my desperate state I might have followed his advice.

So, for newbie's like me, I think leaving the posts up is a very good thing.  

ComeBacKid

Jonny,

Your reply should go under the general topic "Member Polls," under the topic "Deleting Orphaned Posts."  I'm sure hawk will move your reply, but you need to go there to vote for yourself.

I voted to leave up the posts for exactly why you are saying.  As a newbie you can come and see the nonsense and see how we all replied and how much good thought is here in our forum.  You can see the nonsense rubbish of freddy for what it is...

Comebackid

George999

This is slightly off topic, but I know that some here have concerns as to how vitamin D might affect prostate cancer risk.  Fortunately, this is an issue that is being pursued by researchers.  Here are several recent abstracts:

Quote1: Br J Cancer. 2009 Feb 10;100(3):450-4. Epub 2009 Jan 20.

Association between serum 25(OH)D and death from prostate cancer.
Tretli S, Hernes E, Berg JP, Hestvik UE, Robsahm TE.

The Cancer Registry of Norway, Institute of Population-based Cancer Research, Oslo, Norway.

Based on observations that for certain cancers, mortality varies according to sun exposure, vitamin D has been proposed to influence on disease progression. This study aims to investigate whether serum levels of 25(OH)D are associated with prognosis in patients with prostate cancer. In total, 160 patients with a serum sample in the JANUS serum bank were included. For 123 patients a pre-treatment serum sample was taken, whereas 37 of the patients had received hormone therapy prior to the blood collection. The serum level of 25(OH)D was classified as low (<50 nmol l(-1)), medium (50-80 nmol l(-1)) or high (>80 nmol l(-1)). A Cox proportional hazard regression model was used to assess the association between serum 25(OH)D and cancer mortality. During follow-up, 61 deaths occurred, of whom 52 died of prostate cancer. The median time of follow-up was 44.0 months (range, 1.2-154.6). Serum 25(OH)D at medium or high levels were significantly related to better prognosis (RR 0.33; 95% CI 0.14-0.77, RR 0.16; 95% CI 0.05-0.43) compared with the low level. Analysis restricted to patients receiving hormone therapy gave a stronger association. The serum level of 25(OH)D may be involved in disease progression and is a potential marker of prognosis in patients with prostate cancer.

PMID: 19156140 [PubMed - indexed for MEDLINE]

Quote1: Ann Epidemiol. 2009 Feb;19(2):96-102. Epub 2008 Jul 10.

Vitamin D and intervention trials in prostate cancer: from theory to therapy.
Schwartz GG.

Departments of Cancer Biology and Epidemiology and Prevention, Wake Forest University School of Medicine, Winston-Salem, NC, USA. gschwart@wfubmc.edu

Studies of vitamin D and prostate cancer have advanced rapidly from the hypothesis that vitamin D deficiency increases the risk of prostate cancer to intervention trials of vitamin D administration in clinical cancer. The hormonal form of vitamin D, 1,25(OH)(2)D, exerts prodifferentiating, antiproliferative, anti-invasive, and antimetastatic effects on prostate cells. Moreover, normal prostate cells synthesize 1,25(OH)(2)D from serum levels of the prohormone, 25-hydroxyvitamin D. The autocrine synthesis of 1,25(OH)(2)D by prostatic cells provides a biochemical mechanism whereby vitamin D may prevent prostate cancer. Many prostate cancer cells have lost the ability to synthesize 1,25(OH)(2)D but still possess 1,25(OH)(2)D receptors. This suggests that whereas vitamin D (e.g., cholecalciferol) might prevent prostate cancer, existing prostate tumors likely would require treatment with 1,25(OH)(2)D and/or its analogs. The major obstacle to the use of 1,25(OH)(2)D in patients therapeutically is the risk of hypercalcemia. Several maneuvers to reduce this risk, including pulse dosing and the use of less calcemic 1,25(OH)(2)D analogs, have been explored in Phase I-III clinical trials. Once merely a promise, vitamin D-based therapies for prostate cancer may soon be medical practice.

PMID: 18619854 [PubMed - in process]

Quote1: Ann Epidemiol. 2009 Feb;19(2):84-8. Epub 2008 Mar 4.

Vitamin D and cancer incidence in the Harvard cohorts.
Giovannucci E.

Channing Laboratory, Department of Medicine, Harvard Medical School and Brigham and Women's Hospital, Boston, MA, USA.

Since the hypothesis that vitamin D reduces the risk of some cancers was initiated in 1980, this hypothesis has been studied in the Harvard cohort studies, including the Nurses' Health Study (NHS), the Health Professionals Follow-Up Study (HPFS), and the Physicians' Health Study (PHS). Three approaches have been used, the study of circulating 25(OH)vitamin D (25(OH)D) level, of dietary and supplementary intake, and of predicted 25(OH)D. These cohorts strongly support an inverse association with colorectal cancer, because this association has been viewed in both the NHS and HPFS cohorts, for cancers and adenomas, and for plasma, diet, and predicted 25(OH)D analyses. In the NHS, about a 30% reduction in risk was observed for breast cancer comparing the highest with lowest quintiles of 25(OH)D levels. Vitamin D intake also was associated with a lower risk of pancreatic cancer in both men and women, but studies of plasma or predicted 25(OH)D level or dietary intake have generally not been supportive of a major role of vitamin D status in middle-age or elderly men on prostate cancer risk. Results from the HPFS also suggest that the poor vitamin D status generally in African-Americans contributes to their higher incidence and mortality from various malignancies.

PMID: 18291673 [PubMed - in process]

Quote1: Clin Cancer Res. 2009 Jan 1;15(1):190-200.

RRR-alpha-vitamin E succinate potentiates the antitumor effect of calcitriol in prostate cancer without overt side effects.

Yin Y, Ni J, Chen M, Guo Y, Yeh S.

Department of Urology and Pathology, University of Rochester Medical Center, Rochester, New York, USA.

PURPOSE: To determine the antitumor efficacy of using calcitriol combined with RRR-alpha-vitamin E succinate (VES) on prostate cancer. EXPERIMENTAL DESIGN: The effects of VES or VES in combination with calcitriol on the calcitriol target genes were evaluated by Western blot and real-time PCR. The antiproliferation effect of the combination in prostate cancer cells was evaluated by the combination index method. The role of the vitamin D(3) receptor (VDR) in the enhanced antitumor effects of the combination was confirmed by small interfering RNA knockdown strategy. Xenograft-bearing mice were used to reaffirm the antitumor efficacy of this combination. Pathohistology analyses and expressions of VDR and its target genes were analyzed in untreated and treated tumors. RESULTS: VES selectively increased VDR protein in different prostate cancer cells. Low doses of calcitriol combined with VES were significantly superior to the additive effect of individual treatments against prostate cancer cell proliferation. The expression of VDR target genes involved in antiproliferation were further sensitized in the presence of VES. Knockdown of VDR expression abolished the combination benefits in LNCaP and PC3 cells. Consistently, in prostate cancer xenograft models, VES enhanced the therapeutic efficacy of a tolerated dose of calcitriol yet without overt evidence of systemic toxicity and hypercalcemia. This notable in vivo effect was also accompanied by up-regulation of VDR target genes. CONCLUSIONS: Low-dose calcitriol combined with vitamin E analogue could be a solution to the calcemic side effect. The demonstration of superior antitumor activity of low-dose calcitriol plus VES provides the preclinical basis for developing a useful therapeutic strategy for prostate cancer.

PMID: 19118046 [PubMed - in process]

It is often useful to look at multiple studies in order to get a better picture of what is actually going on.

From the first study on the list, we learn that lower serum vitamin D levels are associated with more aggressive prostate cancers.

From the second study we learn that prostate cancer cells can lose the ability to process vitamin D which could explain why some studies are showing that vitamin D is NOT protective against prostate cancer and in fact may increase prostate cancer risk.  The solution of course would be to deliver higher doses of vitamin D which would deliver higher doses of D hormone externally to the cancer cells and kill them.  The problem with that of course is the risk of hypercalcemia.

The third study reflects the above conundrum fretting about the percieved ineffectiveness of vitamin D against prostate cancer as opposed to its percieved efficacy against other cancers.

The fourth study provides insight into a potential solution to the above problem by offering a synergistic candidate that would possibly make the use of vitamin D against prostate cancer feasible.  The one problem with this candidate, a form of vitamin E, is that in order for it to be effective, it cannot be taken orally, but researchers are working on that issue.

These studies are all recent and are representative of current research on the relationship between vitamin D and prostate cancer.  - George

ComeBacKid

If one takes a multivitamin that has 400IU of vitamin D in it, how much of that vitamin D can they expect to actually absorb from the vitamin, half of it?   Anyone know?

George,  You explained to me that taking D3 vitamin D is better than a multi-vitamin, why do you think this?  

Comebackid

Jonny13

I just went out and bought 500 mg l arginine pills.  Can someone recommend a dosage to begin with?  The bottle says 1 pill per day with food, but it seems that others on here are not following this from previous posts.

I'm currently taking 3 pentox per day and a daily men's multivitamin.

Believer

Levine told me to take 1000mg twice a day. So you'd have to take 2 500mg pills in the morning, and 2 in the evening.

George999

Quote from: ComeBacKid on March 03, 2009, 09:24:46 PM
George,  You explained to me that taking D3 vitamin D is better than a multi-vitamin, why do you think this?

The problem is that 1)  The amount of Vitamin D contained in a multi is typically not enough and 2) only the oil based softgel form is uniformly and reliably absorbed by the body.

Hitman

i think doctors are pushing the RDA to be upgraded to 2,000IU/day

George999

The whole problem with Vitamin D is that it really is a hormone and not a nutrient.  Nutrients are usually supplied sufficiently by foods and, with the exception of Vitamin A, usually have few side effects if you get too much.

Vitamin D, being a hormone (actually a pro-hormone) is much more of a problem if a person is deficient.  It also has a couple of much more dangerous potential side effects if things go wrong.  This is why it really needs to be managed by a physician.  There is an emerging Vitamin D level in the blood that is needed to promote health.  This is the range of 50-70ng/ml.  This is the level that is commonly found among people who literally live in the sun.  This is the level one should strive for, but achieving and maintaining that level requires blood tests until you know how much your body requires.

There are also things that can go wrong.

1)  If you have an underlying undiagnosed para-thyroid problem, you can end up with too much calcium in the blood as a result of taking vitamin D.  Approximately 1% to 3% of the population have this problem.  This is a very serious problem that can result in death.  In that case, the parathyroid problem needs to be taken care of first, before raising vitamin D levels.

2)  If you have had prostate cancer in the past, taking vitamin D can make that cancer more aggressive if any of it remains.  This is not well understood, but there is a study out there that indicates it to be a potential risk.  It is likely due to the fact that normalizing vitamin D levels can also raise testosterone levels and thus fuel prostate cancer.  If you have NOT had prostate cancer, vitamin D is actually preventative against it.  In any case every guy should be getting their prostate fingered annually AND be watching for any changes in their PSA.

3)  If you are taking the vitamin D capsules, it is possible to reach a toxic level in your body.  According to the latest from the NIH that seems to be somewhere over 200ng/ml.  The exact level is not real clear.  Another reason why you need to monitor blood levels every few months when starting and thereafter annually.

4)  If using a sunlamp you can overdue and risk skin cancer.  More than twenty minutes a day is probably too much.  Also, using a sunlamp while not maintaining your vitamin D levels can raise the risk of skin cancer.  Sunlight causes skin cancer.  Vitamin D protects against skin cancer.  The reason for high rates of skin cancer is too much sun (or sunlamp) exposure and too little vitamin D in the blood.  This needs to be balanced.

I have probably not covered all of the points.  Once again, the information on vitamindcouncil.org and grassrootshealth.org needs to be read and reviewed with your personal physician.  I am not a doctor.  I am just trying to provide information.  When it comes to vitamin D, it is essential to read the professional advice from doctors on the above websites AND discuss it with your own doctor.  - George

daysdrag

Hello, I've been a lurker here for a while- but that's besides the point for the time being.  I don't have much time, but I would like to respond to what Freddie has been saying about Dr. Lin here.  

A while back I had injured my penis, and unfortunately the first thing I came across was Dr. Lin's site.  I wrote him and took his advice; this consisted of taking his pills throughout the day, and cost me around 150 dollars everytime I ordered from his site.  I would write him back and ask him why it hasn't been working yet, and he tells me to take more of his pills; then my hair starts falling out, and to this day, I believe his supplements jumpstarted my hair loss.  He's selling stuff that tweaks with our hormones, without telling us all of this.  He just wants a quick buck.  I had better results from Arginine and Viagra, and all of that costs me a fraction of what he was selling his destructive stuff for.

While many men have had great success from ballooning- Dr. Lin is not the first one to come up with this theory.  Rather, I believe he is taking fragments of information from actual Chinese Doctors.  He's just a pseudo-urologist.  Sorry for taking such an offensive end in my post, but I really am pressed for time right now, and would prefer people not to fall victim to his overpriced 'potions'.

ComeBacKid

Daysdrag,

Assuming your post is completely honest (which I have no reason to believe its not)  thanks for your reply, we need to hear from people like you who have been sold dangerour or ineffective stuff.  This is why I advocate the usage of pentox which is cheap and somewhat proven to work, and an incredibly safe drug!  I don't know own stock in the company that makes it nor do I work for them!  

chris  

George999

1) VITAMIN D AND FIBROSIS, COLLAGEN, TGF-BETA1, ETC

Quote from: PubMed 1:J Endocrinol. 2009 Feb;200(2):207-21. Epub 2008 Nov 26.
   Vitamin D reduces the expression of collagen and key profibrotic factors by inducing an antifibrotic phenotype in mesenchymal multipotent cells.
   Artaza JN, Norris KC.

   Department of Internal Medicine, Charles Drew University of Medicine & Science, Los Angeles, California 90059, USA. jorgeartaza@cdrewu.edu

   Hypovitaminosis D is an important public health problem. Serum 25-hydroxyvitamin D (25-OHD) is now recognized as an independent predictor for cardiovascular and related diseases (CVD) as well as other chronic medical conditions. However, the biologic pathways through which these effects are mediated remain poorly understood. We hypothesized that exposing mesenchymal multipotent cells (MMCs) to the active form of vitamin D would increase the expression of selected antifibrotic factors that in turn would ameliorate the progression of chronic diseases. MMCs were primed with 5'-azacytidine to induce a fibrotic phenotype and then treated with active vitamin D (1,25D) or ethanol <0.1% as vehicle in a time course manner (30 min, 1, 5, and 24 h, and for 4 and 7 days). The addition of 1,25D to MMCs promotes: a) increased expression and nuclear translocation of the vitamin D receptor; b) decreased expression of TGFB1 and plasminogen activator inhibitor (SERPINE1), two well-known profibrotic factors; c) decreased expression of collagen I, III and other collagens isoforms; and d) increased expression of several antifibrotic factors such as BMP7 a TGFB1 antagonist, MMP8 a collagen breakdown inducer and follistatin, an inhibitor of the profibrotic factor myostatin. In conclusion, the addition of 1,25D to differentiated MMCs displays a decreased profibrotic signaling pathway and gene expression, leading to decrease in collagen deposition. This study highlights key mechanistic pathways through which vitamin D decreases fibrosis, and provides a rationale for studies to test vitamin D supplementation as a preventive and/or early treatment strategy for CVD and related fibrotic disorders.

Quote from: PubMed 1: Nephrol Dial Transplant. 2009 Mar;24(3):778-87. Epub 2008 Oct 1.
   Calcitriol ameliorates capillary deficit and fibrosis of the heart in subtotally nephrectomized rats.
   Koleganova N, Piecha G, Ritz E, Gross ML.

   Department of Pathology, Insitute of Pathology, University of Heidelberg, Heidelberg, Germany. nad_ko@gmx.de

   BACKGROUND: Remodelling of the heart, characterized by hypertrophy, fibrosis and capillary/myocyte mismatch, is observed in patients with chronic renal failure. Low vitamin D levels have been associated with increased cardiovascular risk. In the present experimental study, we studied the effects of non-hypercalcaemic doses of calcitriol on microvascular disease and interstitial fibrosis of the heart. METHODS: Three-month-old male Sprague-Dawley rats were randomized to subtotal nephrectomy (SNX) or sham operation and received calcitriol (6 ng/kg) or vehicle starting immediately thereafter. Blood pressure was measured by tail pletysmography. Albuminuria was measured by rat-specific ELISA. Capillary length density, volume density of interstitial tissue, immunohistochemistry and western blots (vitamin D receptor, collagen I, III, TGF-beta(1), MAP kinases and nitrotyrosine) were assessed after 12 weeks of treatment. RESULTS: After SNX blood pressure, albuminuria and heart weight were elevated, capillary length density reduced and interstitial fibrosis increased. Treatment with calcitriol reduced albuminuria and prevented reduction of capillary density and expansion of interstitium without affecting significant blood pressure and heart weight after perfusion fixation. Calcitriol left high VEGF unchanged, but upregulated VEGF receptor 2 (presumably reversing VEGF resistance). Calcitriol reduced expression of profibrotic TGF-beta(1) and the accumulation of collagens I and III. CONCLUSIONS: Non-hypercalcaemic doses of calcitriol ameliorated, directly or indirectly, cardiac remodelling in sub- totally nephrectomized rats.

2)  VITAMIN D AND INFECTIONS

Quote from: PubMed 1: Pediatr Res. 2009 Jan 28. [Epub ahead of print]
The Vitamin D Connection to Pediatric Infections and Immune Function.

Walker VP, Modlin RL.

Department of Pediatrics [V.P.W.], Department of Microbiology [R.L.M.], Department of Medicine [R.L.M.], David Geffen School of Medicine at UCLA Los Angeles, CA 90095.

Over the past twenty years, a resurgence in vitamin D deficiency and nutritional rickets has been reported throughout the world, including the United States. Inadequate serum vitamin D concentrations have also been associated with complications from other health problems, including tuberculosis, cancer (prostate, breast and colon), multiple sclerosis and diabetes. These findings support the concept of vitamin D possessing important pleiotropic actions outside of calcium homeostasis and bone metabolism. In children, an association between nutritional rickets with respiratory compromise has long been recognized. Recent epidemiological studies clearly demonstrate the link between vitamin D deficiency and the increased incidence of respiratory infections. Further research has also elucidated the contribution of vitamin D in the host defense response to infection. However, the mechanism(s) by which vitamin D levels contribute to pediatric infections and immune function has yet to be determined. This knowledge is particularly relevant and timely, because infants and children appear more susceptible to viral rather than bacterial infections in the face of vitamin D deficiency. The connection between vitamin D, infections and immune function in the pediatric population indicates a possible role for vitamin D supplementation in potential interventions and adjuvant therapies.

3)  VITAMIN D AND CANCER

Quote from: Renal and Urology News Elevated serum levels of vitamin D may be associated with a reduced risk of death from prostate cancer, researchers reported in the British Journal of Cancer (2009;100;450-454).

The researchers, led by Trude Eid Robsahm, PhD, of The Cancer Registry of Norway, Institute of Population-based Cancer Research, Oslo, concluded that serum calcidiol levels may be involved in disease progression, and this patient group may benefit from increasing the serum level of vitamin D if it is below 50 nmol/L.

Lots to chew on.  The case for vitamin D in treatment of fibrosis (such as with Peyronie's) and pathogens is pretty clear.  The case for cancer as well except for prostate cancer.  In the case of prostate cancer there is ongoing research and no clear answers yet.  - George

ComeBacKid

Question for everyone on pentox, so far the biggest side effects I've noticed are dry mouth, more than usual sweating even when I'm sitting here typing, and an increase in irritability and aggression.  It seem like small things just make me angry and aggressive, has anyone else noticed this?  I feel like my blood pressure might be up or that I'm stressed out.  I don't know if this even a side effect of pentox or not? It should be noted that some days I can only get two doses in, but the days I get three in, especially after the third pill for the day I notice an irritability in my mood and aggression.  I also noticed especially after taking three pills per a day, I feel like I need to move my legs around and they feel tingly.  Another effect I've noticed is that my erections are much more improved and "fuller" but its harder to ejaculate, similar to the effect I got when I was on anti depressants four years ago, except that was even worse, it was almost impossible to reach orgasm then.

Comebackid

Iceman

comebackkid - ive been on pentox now for 12 months taking 3 per day and ive found no side effects - how long have you been on it??

kenny82

comeback/iceman

Hi,

i've been on pentox for 2 weeks now, minimum dosage 2x 400mg to 3x times,
but i will stay with twice a day, bacause of the stomach problems i get even with food.
I also noticed the dry mouth effect. The psychological effects i would pay to the pentox, as far as it goes with me.

I plan to stay for 6-8weeks till my supply wents.

Bye Kenny  

Tim468

kenny,

By most reports, "weeks" is not the unit that we use to define how long to take Pentox. Rather, it is "months".

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

ComeBacKid

Iceman,

About a week and a half is how long I have been on pentox.  To avoid the stomach getting upset taking the pentox after a meal, and you won't have that problem.  Bottom line is the side effects arent' that severe and wouldn't cause me to stop taking the pentox.  Last time I stayed on it 9 months and it did work.  I plan to phase in the VED soon, but want to give the pentox some time to work and kick in.

Kenny,

You need to be on the pentox at least 6 months, this time I may stay on it a year or even longer, hopefully long enough to cover the time until xiaflex is available, that could be two years...

Comebackid

Hawk

Quote from: George999 on March 06, 2009, 11:09:05 AM
There are also things that can go wrong.

2)  If you have had prostate cancer in the past, taking vitamin D can make that cancer more aggressive if any of it remains.  This is not well understood, but there is a study out there that indicates it to be a potential risk.  It is likely due to the fact that normalizing vitamin D levels can also raise testosterone levels and thus fuel prostate cancer.  If you have NOT had prostate cancer, vitamin D is actually preventative against it.  In any case every guy should be getting their prostate fingered annually AND be watching for any changes in their PSA.

Here in lies my entire concern which I have previously voiced.  Many men that think they have not had prostate cancer, do in fact have it.  I do not speak as an objective bystander.  I have battled both Peyronies Disease and prostate cancer.  To those that think Peyronies Disease is the worst that can happen, I strongly disagree.  There are many fallacies connected with prostate cancer.  It is a subject I know far more about than I do about Peyronies Disease.  The incidence of undetected prostate cancer in men in their 50's is staggering.  The toll for awakening or developing an aggressive line of this cancer is devastating.  The cost is in hundreds of thousands of dollars in treatment for an individual, not to mention the obvious cost of life.  The cost of even a successful battle can be ED and incontinence.  The late stage battle requires total androgen deprivation with far more than sexual side-effects.  It can devastate everything from the skeletal structure to internal organs and mental functioning.  

Since most men on this forum are in the age group likely to harbor undetected prostate cancer, please exercise caution with vitamin D and testosterone replacement.  Few general practitioners are savvy about recognizing the importance of PSA velocity which is far more important than the actual PSA level.  Additionally, the most aggressive prostate cancers often produce little or no PSA.  Digital exams while important, often fail to reveal cancer even to a very skilled urologist because only one side of the prostate can be felt.

Be careful!  Prostate cancer is more common than all except the most common skin cancer.  That is astounding when you consider that it only affects males.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums