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

[Joshua]

I do think extra lubrication for intercourse could be helpful for men with high degree curves. I noticed when my curve was at ist worse that a good lubricant helped prevent truama.

Joshua

P.S Happy New Year to everyone!

[jagxjr]

Usually masturbation causes less trauma on the plaque than intercourse (that's what my dr said). He said that frequent erections is of great benefit for Peyronies Disease (increased blood flow, elevated cGMP and NO (anifibrotic !). But intercourse often increases pressure on the plaque and causes further inflammation. he said to use plenty of lubricant.

Mike

[droberts10]

I am on my second bottle of the chelation therapy spray. I do want to stay on it for a while before I give a recommendation to try it for the 100 bucks a bottle that it costs. There are so many things that we have tried that sometimes we fool ourselves that things are getting better when they are not. But I am still upbeat about the product and hope that it will improve my condition. I should say that I added cialis to the treatment.

I will continue to keep you posted, GOOD LUCK ALL!!!!!!!!!!

[roadblock]

Hey guys,

  I added Gotu Kola to my regimen today. For everything I'm taking (see earlier post in "Oral Treatments") I've been able to find reasonable data on different university websites, medical sites, etc. which makes me feel that at least there may be some reason to believe they will do something along the lines of what they are proposed to do. If Gotu Kola is used medically to improve wound healing and reduce scarring as well as increase blood flow to areas of inflammation, guess I'll give it a shot.
  As always, I'll keep everyone posted! Hope everyone is having a good New Year so far and welcome to all of the new members!

[steven]

Mastrubation is constant repetition on the same area  - likely causing mini trauma on the same area -- then causing plaque in that area, whereas with intercourse there is some variety, and unlikely to hit exact same area everytime you have intercourse. IMO

Steven

[bob]

The more we delve into Peyronies Disease, the more difficult it seems to come by an official answer. If you ask 10 world-renowned Peyronies Disease docs the same question, you'll get 10 different answers. I've seen at least four different answers to the masturbation/no masturbation query. ("Don't do it, you'll make the problem worse!".... "Fine, do it... but be VERY cafeful!"... "Jerk off to your heart's content, it will make no difference in your condition!".... "Masturbation is NECESSARY to curing Peyronies Disease. It makes your penis healthier!" et al.)

The same reasoning can be applied, by extension, to sexual intercourse.

The same holds true with respect to VEDs. Last month I had a visit to Dr. Mulhall in NYC for a follow-up on the completion of my verapamil injections. He gave me a prescription for a VED, upon my request, but cautioned that, in his view, a VED is of no use in treating Peyronies Disease. He stated this not as a matter of opinion, but as a settled fact.

Now, I read more recently that his friend and colleague, Chicago's Dr. Levine, has a completely different take on VEDs....

More food for thought.

Bob

[Old Man]

Bob:

I will answer your post under the VED topic, so please go there for my reply to you.

Old Man.

[cortong]

Where can you buy this VIP cream ? Ive some some organic ACV so i'll give it a go. I have been on all the vits for a 2months and whilst it hasnt got any worse its not improve. My abnormal curve suddenly appeared after  a long period with no activity due to work pressures so there must be a lot to say for a daily hard on.

regards

Grant  

[learn4life]

Where can you buy this VIP cream ? Ive some some organic ACV so i'll give it a go. I have been on all the vits for a 2months and whilst it hasnt got any worse its not improve. My abnormal curve suddenly appeared after  a long period with no activity due to work pressures so there must be a lot to say for a daily hard on.

regards

Grant

Hey Grant, are you adding ACV with the Fish oil massage ?

Also did you manage to find the above posts regarding Vip Cream?

Im confident that if you do daily massages with Evening Oil/Fish oil plus ACV you should see a reducement from your curve.

Be patient as it could take several days to weeks to see improvement.

If you have damaged the deep nerves/arteries/veins of your penis then rejuvenation will take several months.

It depends on how much damage has been done ... Is it just the 1 scar or or is it all over ?

Do you experience inflammation ? Do you experience pain from normal erections?

Cheers and hope this helps !

P.S Remember that daily blood flow plus prostaglandin E-1 and Nitric Oxide will dissolve the penile colagen scars IF it can get into the penile scars !

[roadblock]

Just wanted to post some early results. After beginning the regimen I posted previously on 12/30/05 (that is the date I began the regimen), today I can say that for the first time my pain has been reduced about 80%!

This happened in one week...prior to beginning the medicines I had little to no change (more like a fluxuation) over 3 months. I realize that the accepted prognosis of Peyronies Disease is that pain will resolve in almost all cases in 6-15 months, which I read on many websites. However, I would find it hard to accept as coincidence the swift resolution of pain immediately after beginning these meds.

I also would reject that it is a placebo effect. I had no such effect when I began taking Vitamin E. Also, a subjective decrease in pain secondary to a placebo effect I would expect to be fairly immediate. I didn't notice a change until yesterday and moreso today, about a week after the beginning of the regimen.

Now with all that said my pain is not entirely gone, but I am hopeful. I didn't expect any immediate results, but am pleased so far. I am going to continue the current regimen for the three months as I stated, and I am hopeful that I will continue to experience beneficial results from these medicines.

I should add that I have added Gotu Kola to the regimen I previously posted, one tablet a day in the evening (I believe it is 500 mg). In fact, I will re-post my regimen so that anyone interested can view it. It is interesting that I have experienced a marked resolution in pain over 48 hours ago...and I started the Gotu Kola 48 hours ago! It wouldn't be responsible to correlate these two things, although it is noteworthy. Gotu Kola is supposed to be helpful in wound healing and decreasing scar formation. I found it interesting that in the research cited (granted, nothing specific was mentioned so I take it all with a grain of salt) increased levels of Gotu Kola was found in inflammatory tissues. Could it be that it also helps to increase the delivery of the other supplements to the inflamed areas as well? Hard to say.

I can't tell you specifically which of the medications are of the most benefit, but if I had to get rid of all but one of these, I'd hold onto the acetyl-l-carnitine which is receiving attention from reputable websites (i.e. not trying to sell anything) including the most recent report on emedicine. Of course, many of you have read the study head to head of acetyl-l-carnitine vs tamoxifen. Although it was a small study and I wasn't able to read the entire publication, the abstract seemed very positive, especially with regards to the statistically significant improvement in curvature, pain and plaque size not only before and after in the acetyl-l-carnitine group, but when compared with the relative improvement in the tamoxifen group. One thing I would be worried about in a study as small as this is that if these guys are anything like us, they are taking handfuls of everything they can find to improve their situation which might confound the data. Now certainly, the investigators would have the participants agree to not take anything else OR at least all be on Vit E,  etc...some type of standardizations. But a certain number will inevitably take something else which might taint the results.

I want to add one more thing, since the majority of my focus on this forum as well as in my current treatment of my Peyronies Disease is the oral treatments. I never was a big proponent of herbal treatments. As a medical professional, I am always skeptical when there is limited science behind any claim.  But having limited medical options for Peyronies Disease treatment, I turned to alternative treatments and kept an open mind. I would like to think that with the help of the members of this forum as well as my own research I have found reasonable options. They are providing me with hope as long as I keep reasonable expectations.

But I want to make two points with regards to alternative and herbal treatments while I'm thinking about it...

1) Always be skeptical when reading about a new product. If you can only buy it on one website and they are making outrageous claims, these are not good signs! Think about it...as you read the posts there are a handful of members who have been dealing with Peyronies Disease for many years, who are well-read, reasonable people with open minds to new treatments. If there was a miracle cure out there, wouldn't we all be on it? It's unfortunate the thousands of individuals and websites selling worthless products to vunerable individuals with difficult medical problems.

2) Any and all of these medications have toxicities and side-effects, even if they are not provided. The reason they are not provided is because these products are not regulated by the FDA so they are not required. We all take these pills at our own risk! They might interfere with the metabolism/excretion of other prescription meds, so make sure to provide a list to any physician who is treating you!

Again, just posting to update you all on one patient's struggle. Look forward to reading more from everyone else, especially the new members!

[learn4life]

Just wanted to post some early results. After beginning the regimen I posted previously on 12/30/05 (that is the date I began the regimen), today I can say that for the first time my pain has been reduced about 80%!

This happened in one week...prior to beginning the medicines I had little to no change (more like a fluxuation) over 3 months. I realize that the accepted prognosis of Peyronies Disease is that pain will resolve in almost all cases in 6-15 months, which I read on many websites. However, I would find it hard to accept as coincidence the swift resolution of pain immediately after beginning these meds.

I also would reject that it is a placebo effect. I had no such effect when I began taking Vitamin E. Also, a subjective decrease in pain secondary to a placebo effect I would expect to be fairly immediate. I didn't notice a change until yesterday and moreso today, about a week after the beginning of the regimen.

Now with all that said my pain is not entirely gone, but I am hopeful. I didn't expect any immediate results, but am pleased so far. I am going to continue the current regimen for the three months as I stated, and I am hopeful that I will continue to experience beneficial results from these medicines.

I should add that I have added Gotu Kola to the regimen I previously posted, one tablet a day in the evening (I believe it is 500 mg). In fact, I will re-post my regimen so that anyone interested can view it. It is interesting that I have experienced a marked resolution in pain over 48 hours ago...and I started the Gotu Kola 48 hours ago! It wouldn't be responsible to correlate these two things, although it is noteworthy. Gotu Kola is supposed to be helpful in wound healing and decreasing scar formation. I found it interesting that in the research cited (granted, nothing specific was mentioned so I take it all with a grain of salt) increased levels of Gotu Kola was found in inflammatory tissues. Could it be that it also helps to increase the delivery of the other supplements to the inflamed areas as well? Hard to say.

I can't tell you specifically which of the medications are of the most benefit, but if I had to get rid of all but one of these, I'd hold onto the acetyl-l-carnitine which is receiving attention from reputable websites (i.e. not trying to sell anything) including the most recent report on emedicine. Of course, many of you have read the study head to head of acetyl-l-carnitine vs tamoxifen. Although it was a small study and I wasn't able to read the entire publication, the abstract seemed very positive, especially with regards to the statistically significant improvement in curvature, pain and plaque size not only before and after in the acetyl-l-carnitine group, but when compared with the relative improvement in the tamoxifen group. One thing I would be worried about in a study as small as this is that if these guys are anything like us, they are taking handfuls of everything they can find to improve their situation which might confound the data. Now certainly, the investigators would have the participants agree to not take anything else OR at least all be on Vit E,  etc...some type of standardizations. But a certain number will inevitably take something else which might taint the results.

I want to add one more thing, since the majority of my focus on this forum as well as in my current treatment of my Peyronies Disease is the oral treatments. I never was a big proponent of herbal treatments. As a medical professional, I am always skeptical when there is limited science behind any claim.  But having limited medical options for Peyronies Disease treatment, I turned to alternative treatments and kept an open mind. I would like to think that with the help of the members of this forum as well as my own research I have found reasonable options. They are providing me with hope as long as I keep reasonable expectations.

But I want to make two points with regards to alternative and herbal treatments while I'm thinking about it...

1) Always be skeptical when reading about a new product. If you can only buy it on one website and they are making outrageous claims, these are not good signs! Think about it...as you read the posts there are a handful of members who have been dealing with Peyronies Disease for many years, who are well-read, reasonable people with open minds to new treatments. If there was a miracle cure out there, wouldn't we all be on it? It's unfortunate the thousands of individuals and websites selling worthless products to vunerable individuals with difficult medical problems.

2) Any and all of these medications have toxicities and side-effects, even if they are not provided. The reason they are not provided is because these products are not regulated by the FDA so they are not required. We all take these pills at our own risk! They might interfere with the metabolism/excretion of other prescription meds, so make sure to provide a list to any physician who is treating you!

Again, just posting to update you all on one patient's struggle. Look forward to reading more from everyone else, especially the new members!

Good Post Roadblock

Iam glad you are getting much better and down 80% pain in a short time span of 1 week !

So is their any other herbs that are similar to Gotu Kola  and its effects?

[roadblock]

learn4life,

  I'm not sure what you mean...many of the herbal remedies, even if they do what they report to do, do so via unknown mechanisms. That is to say, there don't seem to be "classes" of drugs like you have in traditional medicine. For example, Lipitor and Zocor are "statins" but although they have similar actions and may indeed be similar molecules, might have slightly different efficacies due to differences in absorption, lipid solubility, penetrance and activitiy at the receptor sites. However, from what I know many herbals are ground up plants or in which the active ingredient often isn't even identified. All that is known is that people have been eating such and such a plant and report that they have had some benefit.

The upside of that is for the most part, many people have taken it and if there are side effects they are well known. Of course the downside is that there is no way to scientifically correlate the herbal with the effect without removing all other variables as best we can. Gotu Kola, for example, has many reported effects but I was not able to find anything discussing the actual mechanism of action. It also listed "tumor growth" as a possible side effect. No idea how that was established but we all should take these types of cautions seriously because without a study behind it I assume that there were pretty significant numbers to support that statement!

One more thing...just remember that anytime we take anything that has a biochemical effect on the body, it certainly can be having effects in many other places that we are unaware of at this time...and not always good effects. The rule in medicine is as few medications as possible to reach the desired effect. We, the patients with Peyronies Disease, must weigh the risk vs benefit of any unproven treatment. It's a risk...but a risk many of us are more than willing to take because Peyronies Disease is a pretty big issue for most of us.

I'm by no means an herbal expert...these are just my opinions and observations.

[learn4life]

learn4life,

  I'm not sure what you mean...many of the herbal remedies, even if they do what they report to do, do so via unknown mechanisms. That is to say, there don't seem to be "classes" of drugs like you have in traditional medicine. For example, Lipitor and Zocor are "statins" but although they have similar actions and may indeed be similar molecules, might have slightly different efficacies due to differences in absorption, lipid solubility, penetrance and activitiy at the receptor sites. However, from what I know many herbals are ground up plants or in which the active ingredient often isn't even identified. All that is known is that people have been eating such and such a plant and report that they have had some benefit.

The upside of that is for the most part, many people have taken it and if there are side effects they are well known. Of course the downside is that there is no way to scientifically correlate the herbal with the effect without removing all other variables as best we can. Gotu Kola, for example, has many reported effects but I was not able to find anything discussing the actual mechanism of action. It also listed "tumor growth" as a possible side effect. No idea how that was established but we all should take these types of cautions seriously because without a study behind it I assume that there were pretty significant numbers to support that statement!

One more thing...just remember that anytime we take anything that has a biochemical effect on the body, it certainly can be having effects in many other places that we are unaware of at this time...and not always good effects. The rule in medicine is as few medications as possible to reach the desired effect. We, the patients with Peyronies Disease, must weigh the risk vs benefit of any unproven treatment. It's a risk...but a risk many of us are more than willing to take because Peyronies Disease is a pretty big issue for most of us.

I'm by no means an herbal expert...these are just my opinions and observations.

You mentioned the effects of the herb. Although you are not sure if it was the herb that caused it :

I should add that I have added Gotu Kola to the regimen I previously posted, one tablet a day in the evening (I believe it is 500 mg). In fact, I will re-post my regimen so that anyone interested can view it. It is interesting that I have experienced a marked resolution in pain over 48 hours ago...and I started the Gotu Kola 48 hours ago! It wouldn't be responsible to correlate these two things, although it is noteworthy. Gotu Kola is supposed to be helpful in wound healing and decreasing scar formation. I found it interesting that in the research cited (granted, nothing specific was mentioned so I take it all with a grain of salt) increased levels of Gotu Kola was found in inflammatory tissues. Could it be that it also helps to increase the delivery of the other supplements to the inflamed areas as well? Hard to say.

Do you take any other herbs ? Why did you decide to choose this specific one without proven studies?

[roadblock]

I had seen Gotu Kola mentioned on this website, and looked for more info on the internet. Since many herbs are not FDA regulated and not prescription, sometimes it is hard to find good info. However, if legitimate medical websites (i.e. websites not attempting to sell the herb) are providing information, they would not do so unless the statements are true to a reasonable degree based on what is known by the medical community.

http://www.umm.edu/altmed/ConsHerbs/GotuKolach.html

Now, just because a substance is reported to aid in wound healing and increase concentration of antioxidants in inflamed tissue does not mean it will do anything for Peyronies Disease...but then again maybe it will. Certainly, most of us are on Vitamin E and other meds for Peyronies Disease...could Gotu Kola aid in the delivery of these substances to the tissues we are targeting? It is possible. The tunica albuginiea does not receive a direct blood flow and therefore it is difficult for substances to reach it. This is also a big reason why a sprained ankle heals in days to weeks while Peyronies Disease pain resolves in "6-15 months from onset" according to most urologists.

So, ultimately, I think it is a a very reasonable addition to any Peyronies Disease regimen when taken as directed, observing the contraindications and precautions mentioned.

[roadblock]

I have seen wogonin mentioned on this site...anybody have any experience with it?

Also, most of the stuff I have been taking I get from GNC but I am open to suggestions if members have had a good experience with any online dealers.

roadblock

[cortong]

Having  searched high and low in the local health shops I cant seem to find  vit e with gamma. Does anyone out there know of an internet supplier ?. I was a bit concerned to find out that to much alpha can actually suplant the gamma in your system  which as the gamma is supposed to be the one that does Peyronies Disease most good is a worry.    

[Hawk]

I ordered some from www.puritan.com about 2 months back.  The site is also has a pretty good nutritional information section.



Specifically, I think this will take you directly to the Gamma E
http://www.puritan.com/pages/file.asp?xs=BF5172BAFB80472291F15754BD17C9ED&PID=4414&CPID=6898&np=1

[peter]

has anyone tryed COXFREE ?

[august]

Had a chance to read through this enitre thread and found one mention of Potaba. It was not a positive statement - does anyone have something else to say about it/ did anyone take it for 3 months? If i continue with it I have to have the prescription rewritten - it was written for 200 pills which will only last 7/8 days at a cost of $60.00... yikes!

My Doc, who uses TV for his Peyronies Disease patients, says that Potabo works and is about the same cost as TV.    I do not know if the has personal experience prescribing Potabo.

[Hawk]

August,

I have NO knowledge of pototaba but I have a negative impression based on the little I have heard.  I have not heard enough to have an intelligent opinion however.  My understanding is that you can get a generic form much cheaper from places such as Hope pharmacueticals.  If it doesn't help, the fact that it is cheaper is certainly no bargin.  If you are committed to taking it, I guess cheaper is better.  

If you click of search right under the map pf the globe at the top of this page,  then type in potaba, you will see there are several other referrences to potaba scattered through the forum.

Like you, I would be looking for conclusive clinical studies, or at least a significant pattern of patients giving positive first hand reports.  If you find and solid information, let us know.

Good luck

[peter]

does anyone know if COXFREE works

[Hawk]

does anyone know if COXFREE works

Peter I have never heard a discussion on coxfree, I have only a guess what it would be.  I did a very quick search on the web and found no obviious link.  If coxfree is as it sounds, a cox2 inhibitor, they do reduce inflamation.   I was on Zyflamend (Natural Cox2 Inhibitor) that is recommended by Columbia University's Holistic Urology Department for supressing prostate cancer cell proliferation.  Any Cox2 inhibitor will generally reduce inflamation which is an underlying element in many conditions.  I have no indication that it had any impact on my Peyronies Disease, especially since I got Peyronies Disease while I was taking it.

I personally don't think there is anything that "Works" in the sense that it reliably cures or stops Peyronies Disease.  I think there are some things that can  have a positive impact in some people.  I never got an impression that a Cox2 inhibitor had any impact on my Peyronies Disease.

If Coxfree is something other than a Cox2 inhibitor, please fill us in.

[soxfan]

Peter,

The ingredients in coxfree are natural and at worse they are harmless. A two  month's supply costs about forty dollars so do what I did and order a couple of bottles and see if it works.

Cheers.

http://www.vitaminusa.com/coxfr60tavi.html

[Hawk]

My concern would be the MSM and Collagen.  That along with vitamin C and L-lysine are the building blocks that spur collagen production.  I have mentioned before that I have seen medical warnings by a few medical doctors, for Peyronies Disease patients to avoid collagen producing supplements .  Keep in mind the investigative drug that holds some hpe AA4500 works by breaking down collagen.  Also consider that there are many types of collagen in the body.  Over deposits of inflexible collagen is in fact what Peyronies Disease is. Collagen types in cartilage are not elastic.

yesterday I used the search feature and stumble accross a very interesting post by Mark501 under this topic that I had missed.  It supports the warning against collagen producing supplements.

jay, reference your question about glucosamine. For those using topical verapamil, the directions say not to take glucosamine while on tv. It also mentions others not to take. Quote 'DO NOT TAKE SUPPLEMENTAL GLUCOSAMINE/CHONDROTIN, L-LYSINE, OR GREATER THAN 400MG SUPPLEMENTAL VITAMIN C PER DAY. Best regards, Mark.

Zyflamend is an all natural Cox2 inhibitor without the MSM and collagen.  
http://www.costlessvitamins.com/store/stores/CostlessVitamins/Browse_Item_Details.asp?Item_ID=190&Shopper_id=77711211751427771

I make no claim that it does anything  for Peyronies Disease

[peter]

what about enzymes? i heard a product called wobenzyme N helps,is that true?

[hopeful]

Can you please tell me what is VIP creme.. and where can you get it?  Also what is ACV ( Apple Cider Vinegar) and how are you applyiong fish oil.. any response yet..

Hopeful

Where can you buy this VIP cream ? Ive some some organic ACV so i'll give it a go. I have been on all the vits for a 2months and whilst it hasnt got any worse its not improve. My abnormal curve suddenly appeared after  a long period with no activity due to work pressures so there must be a lot to say for a daily hard on.

regards

Grant

Hey Grant, are you adding ACV with the Fish oil massage ?

Also did you manage to find the above posts regarding Vip Cream?

Im confident that if you do daily massages with Evening Oil/Fish oil plus ACV you should see a reducement from your curve.

Be patient as it could take several days to weeks to see improvement.

If you have damaged the deep nerves/arteries/veins of your penis then rejuvenation will take several months.

It depends on how much damage has been done ... Is it just the 1 scar or or is it all over ?

Do you experience inflammation ? Do you experience pain from normal erections?

Cheers and hope this helps !

P.S Remember that daily blood flow plus prostaglandin E-1 and Nitric Oxide will dissolve the penile colagen scars IF it can get into the penile scars !

[hopeful]

Fairly new member- have Peyronies Disease for about 6-7 months now.. am trying to think and research out of the box.. as I do not trust any of the so-called Peyronies Disease specialist.. as I have been to (3) thus far and each one has a different remedy.. plus I feel that the so-called ED specialist are just SCAMS..  whatever.. $1400 out of pocket so-far...

I have done research on Iontophoresis.. according the company and the one doc that I went to that they are having a 50% improvement rate ( average) which I would be delighted especially at a 35% bend.. have not ordered yet from Physion  www.physion.com $1,000 for the device plus 30- applications of Verapimil- have heart arthymia.. and was concerned about Verapimil.. and have learned when applied via Ionoto.. that it does not become systemic...

I am a big believer in Enzymes...however, due to the nature of the disease ( scar tissue) I felt that taking enzymes orally would take forever and began looking into an enzyme creme that could be delivered via Ionotophoresis.. I approached one of the largest enzyme manufactures.. they formulate for just about everyone including the high-priced Neprinol... with my theory.. they got back to me and introduced me to a small company that has been making a creme and has been using it to treat  Lymhodema... it has worked.. I introduced the company to Peyronies Disease.. their treatment eats or destroys the fibrous tissue.. which is the main thing for Peyronies Disease...

Clinical Trial- I told them that I want to try and organize a small clinical trial with myself and some other Peyronies Disease patients under the supervision of a medical professional....would you be interested as a medical professional???

They want me to start applying it topically.. as my main idea was to apply it using Ionotophoresis ( need to have study done to see if it can be delivered this way ) and/or through a needlesless injection ( a new syringe that uses pressure instead of a needle) more on this later...

Your comments please

Hopeful


quote author=roadblock link=topic=22.msg1684#msg1684 date=1136572779]
Just wanted to post some early results. After beginning the regimen I posted previously on 12/30/05 (that is the date I began the regimen), today I can say that for the first time my pain has been reduced about 80%!

This happened in one week...prior to beginning the medicines I had little to no change (more like a fluxuation) over 3 months. I realize that the accepted prognosis of Peyronies Disease is that pain will resolve in almost all cases in 6-15 months, which I read on many websites. However, I would find it hard to accept as coincidence the swift resolution of pain immediately after beginning these meds.

I also would reject that it is a placebo effect. I had no such effect when I began taking Vitamin E. Also, a subjective decrease in pain secondary to a placebo effect I would expect to be fairly immediate. I didn't notice a change until yesterday and moreso today, about a week after the beginning of the regimen.

Now with all that said my pain is not entirely gone, but I am hopeful. I didn't expect any immediate results, but am pleased so far. I am going to continue the current regimen for the three months as I stated, and I am hopeful that I will continue to experience beneficial results from these medicines.

I should add that I have added Gotu Kola to the regimen I previously posted, one tablet a day in the evening (I believe it is 500 mg). In fact, I will re-post my regimen so that anyone interested can view it. It is interesting that I have experienced a marked resolution in pain over 48 hours ago...and I started the Gotu Kola 48 hours ago! It wouldn't be responsible to correlate these two things, although it is noteworthy. Gotu Kola is supposed to be helpful in wound healing and decreasing scar formation. I found it interesting that in the research cited (granted, nothing specific was mentioned so I take it all with a grain of salt) increased levels of Gotu Kola was found in inflammatory tissues. Could it be that it also helps to increase the delivery of the other supplements to the inflamed areas as well? Hard to say.

I can't tell you specifically which of the medications are of the most benefit, but if I had to get rid of all but one of these, I'd hold onto the acetyl-l-carnitine which is receiving attention from reputable websites (i.e. not trying to sell anything) including the most recent report on emedicine. Of course, many of you have read the study head to head of acetyl-l-carnitine vs tamoxifen. Although it was a small study and I wasn't able to read the entire publication, the abstract seemed very positive, especially with regards to the statistically significant improvement in curvature, pain and plaque size not only before and after in the acetyl-l-carnitine group, but when compared with the relative improvement in the tamoxifen group. One thing I would be worried about in a study as small as this is that if these guys are anything like us, they are taking handfuls of everything they can find to improve their situation which might confound the data. Now certainly, the investigators would have the participants agree to not take anything else OR at least all be on Vit E,  etc...some type of standardizations. But a certain number will inevitably take something else which might taint the results.

I want to add one more thing, since the majority of my focus on this forum as well as in my current treatment of my Peyronies Disease is the oral treatments. I never was a big proponent of herbal treatments. As a medical professional, I am always skeptical when there is limited science behind any claim.  But having limited medical options for Peyronies Disease treatment, I turned to alternative treatments and kept an open mind. I would like to think that with the help of the members of this forum as well as my own research I have found reasonable options. They are providing me with hope as long as I keep reasonable expectations.

But I want to make two points with regards to alternative and herbal treatments while I'm thinking about it...

1) Always be skeptical when reading about a new product. If you can only buy it on one website and they are making outrageous claims, these are not good signs! Think about it...as you read the posts there are a handful of members who have been dealing with Peyronies Disease for many years, who are well-read, reasonable people with open minds to new treatments. If there was a miracle cure out there, wouldn't we all be on it? It's unfortunate the thousands of individuals and websites selling worthless products to vunerable individuals with difficult medical problems.

2) Any and all of these medications have toxicities and side-effects, even if they are not provided. The reason they are not provided is because these products are not regulated by the FDA so they are not required. We all take these pills at our own risk! They might interfere with the metabolism/excretion of other prescription meds, so make sure to provide a list to any physician who is treating you!

Again, just posting to update you all on one patient's struggle. Look forward to reading more from everyone else, especially the new members!
[/quote]

[j]

hopeful,  I've seen the abstract of the study on Acetyl-L Carnitine vs. Tamoxifen. The thing that I notice is that the amount of improvement they're claiming is so small as to be almost insignificant.  From the average values given you can infer that many in the study group had curvature so slight that it probably fell within the range of normal. And the amount of improvement was so small that I question the measurement techniques. In short I think they took a bunch of guys with very mild Peyronies Disease - if indeed it was Peyronies Disease at all - convinced themselves that things were 10% better on average after ALC and called it a success.  

I've seen a number of guys post that they've taken ALC for extended periods with no improvement noticed.

There does seem to be serious research interest in ALC for other reasons, but nothing I've read suggests it would have any effect on fibrosis.

[dcaptain]

Hey guys, here's one for you.  I found the following article on the PubMed site:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16430041&query_hl=1&itool=pubmed_docsum

Did a little digging and found that these Urologists have done four studies on the use of "propoleum" for Peyronies Disease.  However, I have no idea what propoleum is, and haven't been able to find it online.  The article abstracts are in Spanish, translated to English, so I'm going with what the abstract says.  

Anyone know of this propoleum?

[Hawk]

However, I have no idea what propoleum is, and haven't been able to find it online....Anyone know of this propoleum?

It seems that it is bee propolis (the glue honey bees produce/process from plants).  Maybe it is a Spanish variation of the word.  I used to have a few bee hives.  Where are they when I need them?

[j]

This came and went on the BSTC forum sometime last year. A bunch of posters bought the stuff and tried it. As far as I know it did nothing.

These researchers are Cuban. Cuba has a big beekeeping industry and is trying to build it up. As they produce more honey, they end up with more propolis as a by-product. So they're probably trying it on all sorts of things, looking for ways to market it.


From www.wowcuba.com:
"Cuba is increasing honey production to better meet European demand. Cuba collected 7,200 tons of honey during 2003, the largest yield in 12 years. This year Cuba is set to produce more than 700 tons of specific honey from campanula and mangrove plants, highly sought after for the honey's clarity and freshness. Cuba also has the certified potential to sell 1500 tons of organic honey.

     There are 200,000 hives on the island but only 144,300 are currently functioning. Production has been increased in both the horizontal and vertical sense by increasing the number of containers in order to raise the amount of honey stored. A digitized map of Cuba's vegetation allows a more productive placement of the hives. Payment to the over 2500 local growers has also been streamlined to better reflect the quality and time to harvest. Honey is also being more widely used in domestic creams and nutritional products."

[Joshua]

I am a big believer in Enzymes...however, due to the nature of the disease ( scar tissue) I felt that taking enzymes orally would take forever and began looking into an enzyme creme that could be delivered via Ionotophoresis.. I approached one of the largest enzyme manufactures.. they formulate for just about everyone including the high-priced Neprinol... with my theory.. they got back to me and introduced me to a small company that has been making a creme and has been using it to treat  Lymhodema... it has worked.. I introduced the company to Peyronies Disease.. their treatment eats or destroys the fibrous tissue.. which is the main thing for Peyronies Disease...

Clinical Trial- I told them that I want to try and organize a small clinical trial with myself and some other Peyronies Disease patients under the supervision of a medical professional....would you be interested as a medical professional???

They want me to start applying it topically..

Hopeful:
Have you started this topical treatment? What is Lymhodema? I have never heard of that before. What is the topical ointments ingredients?
iteresting... Keep us updated and good luck

[Old Man]

Joshua:

Lymphodema is the swelling that occurs in any part of the body that has mucuous membrane or delicate tissues. It can occur on the penis in the forskin if not circumcised or in the tissue left after circumcision, etc. I had it occur several times when I first started using the VED after my radical.

It can occur when the body has too much fluid buildup for any reason.
I believe (not clinical proof) that someone who had congestive heart condition is subject to having this occur more frequently than one without the failure, etc.

Maybe someone else will have a better picture of it.

Old Man

[Joshua]

Thanks Old Man. I am going to google it and read about it as well. Has this ever been accused of relating to peyronies?

[Old Man]

Joshua:

As far as I know, there is no relation of this disorder with Peyronies Disease. It just seems to develop when the tissue gets slightly damaged or fluid builds up in the tissue.

Since my open heart surgery in 2004, I am taking Lasix generic to keep down fluid buildup in my feet and legs. This is supposed to help keep down lymphodema too I am told.

Old Man

[hopeful]

100% special (non-plant enzymes) do not have formula as it has taken this company over 4 years of research.. they are modifying a batch for the Peyronies Disease test for me.. will keep you posted.. Also, with regrads to lymphodema.. just as any injury including Peyronies Disease it is part of the healing process of the body....producing the fibrin and sending it to the affected area....  
Hopeful//


Still researching.......

I am a big believer in Enzymes...however, due to the nature of the disease ( scar tissue) I felt that taking enzymes orally would take forever and began looking into an enzyme creme that could be delivered via Ionotophoresis.. I approached one of the largest enzyme manufactures.. they formulate for just about everyone including the high-priced Neprinol... with my theory.. they got back to me and introduced me to a small company that has been making a creme and has been using it to treat  Lymhodema... it has worked.. I introduced the company to Peyronies Disease.. their treatment eats or destroys the fibrous tissue.. which is the main thing for Peyronies Disease...

Clinical Trial- I told them that I want to try and organize a small clinical trial with myself and some other Peyronies Disease patients under the supervision of a medical professional....would you be interested as a medical professional???

They want me to start applying it topically..

Hopeful:
Have you started this topical treatment? What is Lymhodema? I have never heard of that before. What is the topical ointments ingredients?
iteresting... Keep us updated and good luck

[peter]

what about the enzyme product WOBENZYE N is that a good enzyme

[hopeful]

I have been unable to connect with anyone in their lab to find out what enzymes they are using.. whether plant or something else...will keep trying ..

what about the enzyme product WOBENZYE N is that a good enzyme

[flexor]

For whatever it means:

It says on the label:

3 tablets = 1 serving.

Amounts per serving:

Pancreatin 56,000 USP-units protease (pancreas) Sus scrofa  300mg
Papain 492 FIP-unit Carica papaya 180mg
Bromelian 675 FIP-unit Ananus comosus 135mg
Trypsin  2,160 FIP-unit (pancreas) Sus scrofa 72mg
Chymotrypsin 900 FIP-unit (pancreas)  Bos taurus 3mg
Rutosid  3 H2O (Rutin) Sophora japonica 150mg

"FIP-unit is the measurement of enzyme activity according to the test
methods of the Federation Internationale  Pharmaceutique"

[Hawk]

For what it is worth.  I took a recommended dose of Wobenzyme and a recommended dose of Fibrozyme.  Both are manufactured and marketed by the same company.  Wobenzyme is the oldest and by far the most popular enzyme mixture in Europe.  Both of these were taken together for about 2 months and I continued the Wobenzyme for another month.  Many of the ingredients were the same as those listed by flexor except the Fibrozyme also contained protease and serrapeptase.  

I noticed no slight improvement and also did not notice any of the many other health benefits supposedly brought on by proteolytic enzymes.  I do think they can help reduce swelling from an injury but I was not impressed.

[hopeful]

FYI- Prior to Peyronies Disease, I have ben taking oral enzymes to control blood clots in my blood as well several other issues- very effectively- primarily protesease, bromelian etc.. since Peyronies Disease, ,I have added natokanaise..I strongly reccomend this protocol to any one who has a heart problem- especially arythmia - (when happens can easily throw a clot)- not a big fan of regular drugs.. Plus I suggest you might want to check into Live Blood Cell microscopy- do a google- saved my life 5 years ago...as I was a walking time bomb.. blood was filled with clots....  just had another test less than 3- weeks ago- NO CLOTS...Clean as a whistle.. The enzymes also eat...choletsterol and plaque...and fibin! However, I belive with Peyronies Disease.. it is going to take something a lot stronger in severe cases.. that is why I think collaneges may be effective..just dont like the needle injection...and exploring this other creme that uses diffenerent enzymes...serapeptaise etc..

Hopeful

For what it is worth.  I took a recommended dose of Wobenzyme and a recommended dose of Fibrozyme.  Both are manufactured and marketed by the same company.  Wobenzyme is the oldest and by far the most popular enzyme mixture in Europe.  Both of these were taken together for about 2 months and I continued the Wobenzyme for another month.  Many of the ingredients were the same as those listed by flexor except the Fibrozyme also contained protease and serrapeptase.  

I noticed no slight improvement and also did not notice any of the many other health benefits supposedly brought on by proteolytic enzymes.  I do think they can help reduce swelling from an injury but I was not impressed.

[hopeful]

Thanks,

These are good enzymes.. this is in tablet form  what about creme as I have not ben able to source  it???

For whatever it means:

It says on the label:

3 tablets = 1 serving.

Amounts per serving:

Pancreatin 56,000 USP-units protease (pancreas) Sus scrofa  300mg
Papain 492 FIP-unit Carica papaya 180mg
Bromelian 675 FIP-unit Ananus comosus 135mg
Trypsin  2,160 FIP-unit (pancreas) Sus scrofa 72mg
Chymotrypsin 900 FIP-unit (pancreas)  Bos taurus 3mg
Rutosid  3 H2O (Rutin) Sophora japonica 150mg

"FIP-unit is the measurement of enzyme activity according to the test
methods of the Federation Internationale  Pharmaceutique"

[flexor]

Wobenzym creme is available from www.betterhealthinternational.com  2oz $9.95.

It needs to be transdermal rather than just topical. Maybe their Nanoshpere technology does that ?


Info:
"SUPPLEMENT FACTS

ACTIVE INGREDIENT: Menthol (1.25%)

PURPOSE: Topical Analgesic

USE: For temporary relief for minor pains and aches of muscle and arthritic joints, including sports and repetative motion injuries. Nanoshpere technology affords penetrating pain relief.

WHILE USING THIS PRODUCT: After each application, thoroughly wash hands with soap and water. Discontinue use if the skin becomes excessively irritated. In case of persistent symptoms, or recurrence, consult a physician promptly.

DIRECTIONS: Adults and Children 3 years of age and older: Apply to the affected area no more than three (3) or four (4) times a day. This product is not to be used on children under the age of 3 years without consulting a physician

INACTIVE INGREDIENTS: Water, Oryza Sativa (Rice) Bran Oil, Alcohol, Bromelain, Papain, Boswellia Serrata Extract, Palm Oil Glycerides, Harpagophythum Procumbens Extract, Zingeber Officinale Extract, Yucca Schidigera Extract, Polysorbate-80, Laureth-4, Silica, Sodium Hydroxymethylglycinate, Acrylates/C10-C10 Alkyl Acrylates Crosspolymer, Hydrophillic Polyether."

[hopeful]

Thanks.. was aware of this.. Bromolain and Papin are very good.. not sure about the other ingredients.. plus transdermal... that is why I am researching enzymes ( stronger) that can be delivered via IONOTOPHROSES or needless injection, as well as orally...and topically??? It is all over the net for as little as $5.85,,,

Everything I research points to enzymes... the big question is what are the best ones... and what is the best way to administer...I certainly am not a candidate for a needle injection..doesn't make sense... more trauma, more scars, more Peyronies Disease.. HELLO.. I don't think these doctors or drug companies get it...

Hopeful

[jess99504]

My Urologist started me on .6mg of Colchicine aday for the last 3 months..
Not much has happened, we talked about upping the dosage to 1.2mg started that last Saturday. we'll see

[Hawk]

Jess,

My well known urologist had me on 1 .6 mg for one week, then 2 a day for a week, then 3 a day for a week.  

Keep a close eye on your white blood count and other side effects (some can be serious).

I know of no studies showing Cholchicine works.  I don't understand why that does not seem to bother the doctors as much as it does if we try infrared heat or a VED or Acetyl L-Carnitine that have few or no negative side effects.  The importance of clincial studies seems to be used very selectively.

[BlackEyes]

to everyone that istaking or thinking about taking colchicine,
DONT TAKE IT! Well, if u like feeling mildly sick, weak and taking a crap 4or5x a day. I have had a mild case of peyronies for the last three years, and i am very young (19), and the colchicine never did a freaking thing except probably making my overall health worse. i took .6mg almost everyday for five months (took days off when i felt too sick to take it).
Since then, i just decided it would be best for me to treat myself. I have also had a urologist (a year ago)  that made a new plaque on my penis near the gland by just being too tough during a manual examination when he was squEEzing my tool for plaques, which he obviously found, and apologized later for being too rough. Maybe, it was because he was 76 and had STUPID arthritc hands.
DONT TAKE COLCHICINE. its just a waste of time, and you'll feel stupid after 6months of taking this crap with no results.
as of now, my peyronies is getting better b/c of a new regiment i made for myself:
a-l-carnitine, 3 types of vit E, vit c, msm, neprinol, this tea that i forgot the name of but can get it later, dmso+copper spray+vit e oil+leech oil,
and last but not least the Soma Correct VED which has helped the most in the shortest amount of time(only had it for two weeks). VED is def the most important aspect of my treatment, all the other stuff is for preventing exacerterbation of peyronies and for pain management.

[hopeful]

Can you give us you daily consumption and usage of everything you listed...regimem. brand names, amount you are taking, how oftern and how much of each,,,as for the VED.. how often do you use.. and what is your bend?? degrees how severe and where...would like to know..  what do you think the cost is monthly for everything you are doing???

Hopeful

[jess99504]

Hawk.. Last blood test I had all my levels were right where they should be.
I haven't had any side affects with the stuff yet.
The urologist I see at the VA said he's had some good results with the stuff. Don't know how or why it works.. I have noticed that the bend has changed just a tad.. not much, but enough to notice.. Who knows.. Maybe this weekend when I see my girl I'll ask her if there is any difference..  

[BlackEyes]

Jess, im glad that youre not being adversely effected  by the colchicine but at some point u should consider what Hawk said: "i know of no studies showing colchicine works"
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10332485&dopt=Abstract
basically saying that 1 in 3people in the early stage of the disease will improve but not by much (1999 study)
http://www.hisandherhealth.com/articles/Peyronies_Disease_A_Discussion_Explanation_and_Options.shtml (recent)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14973528&dopt=Citation
2004 article saying this stuff is pointless

basically, you'll see the oldest study (7yrs old) is the only study saying that colchicine is beneficial. Overall, for cases ranging from very mild to severe, 1 in 10 might improve, and that one case is probably the most mild.
colchcine is like our modern day tamoxifen...it doesnt really work when compared to more responsive treatment AND LESS OR NO side effects
im not trying to bag on colchicine, but i dont think its going to help someone with peyronies but maybe someone w/ gouty arthritis

hopeful, you should go to www.peyronies-disease-help.com
talk to Dr. Herazy if u can, he's real easy to relate to since he has this himself...i dont think these treatments are a cure but they will def help w pain...id talk to Old Man if u cab about the VED