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Author Topic: Highlights of Alternative Treatments for Peyronie's Disease  (Read 31186 times)

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Liam

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Highlights of Alternative Treatments for Peyronie's Disease
« on: September 13, 2006, 09:27:24 PM »

This area contains highlights from the main Peyronies Disease Discussion Forum topic on "Alternative Treatments for Peyronie's Disease ,...".  This area contains discussions on alternative treatments that do not fit in other categories. 

As with all the topics on this newly diagnosed board, these topics are read only highlights copied from the main forum.  Go to the main forum to join in the exchange by posting questions and comments.


 
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Angus

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Highlights of Alternative Treatments for Peyronie's Disease
« Reply #1 on: December 18, 2006, 08:05:06 PM »

 

      The following is a one-post compilation of highlights from hundreds of posts in the Alternative Treatments for Peyronies Disease thread. Individual posts have been copied into this page and no grammar or wording has been changed from the original post. Entire posts have been copied where possible to retain the context of the original post. The posts are entered in chronological order from the top of the page to the bottom, so the oldest posts will be read first and the most recent posts will be read last. This IS a work in progress and will be added to and edited so check back often.

               Highlights of Alternative Treatment For Peyronies Disease Thread





Joshua           « Reply #1 on: August 22, 2005, 05:11:33 PM »    Quote

________________________________________
I have had some recent good fortune of ABOUT a fifty percent plaque nodule reduction! The reduction has come within the last thirty days. I think it has been even sooner but I am going to go with 30 days to be safe. This is an absolute reduction. I can plainly tell that the plaque nodule went from about the size of a half of a marble to half of a pea. My wife even felt the nodule and stated that she thought it was almost gone now.

I am going to go through the forum and enter the exact treatments I have been using within the last thirty days in the appropriate topics areas.

I am posting this for information only. I can’t promise and don’t promise any results if you follow what I have been doing. I don’t know if the results were based on what I have been doing or if I have just experienced a natural regression.

This section I will tell about a treatment that I have been using for a couple of weeks which absolutely falls into “alternative treatments”

My philosophy on Peyronies Disease treatment is that if it seems safe and there is a shred of evidence something might help, then I use it! I will throw everything but the damn kitchen sink at my Peyronies Disease.

In reference to the hyperthermia report that was posted on the news section. I was fascinated by that report and did some research on the net. I decided to make a home treatment system using an infrared lamp (250 watt bulb). I then covered all the exposed areas of my penis except the area with the plaque nodule and allowed the heat lamp to warm the nodule area. I position myself to about 12-16 inches. I get as close as I can stand the heat. I allow the heat to penetrate for 30 to 40 minutes. I have done this every other night for about the last two weeks. It does something because the nodule is usually sore after using this treatment. My research shows that at that distance and with that amount of wattage I should get about 3 to 4 inches of infrared heat penetration. 

Objective: Previous experience in the treatment of plaque with hyperthermia in orthopaedics led the authors to investigate the effectiveness of this approach in patients with Peyronie's disease.Patients and methods: The study population comprised 60 patients (aged 36-76 years) with advanced Peyronie's disease. Patients were divided into two groups (A and B), with 30 in each. Group A patients underwent local hyperthermia treatment, with 30-min treatment sessions twice a week for 5 weeks. Patients received a total of 10 applications, which reached a local temperature of 39-40 degrees C. A second cycle was repeated after a 1-month interval for a total of 20 treatment sessions. Group B patients were treated with intra-plaque infiltrations using 10?mg verapamil; they received one infiltration once a week for 3 months. Differences between the two groups, as well as between variables (before and after treatment), were analysed using Student t-test and Fisher test.Results: Hyperthermia significantly reduced plaque size and penile curvature and led to an increase in mean scores of erectile function (EF) domain, while verapamil had no such effects. Haemodynamic parameters were not significantly modified in either group. Hyperthermia caused significantly fewer side effects than verapamil infiltrations and was significantly more effective in preventing disease progression. There were no significant differences between the two groups in terms of pain reduction during erection.Conclusions: Results of this study stress the efficacy of hyperthermia in the treatment of advanced Peyronie's disease.






Nick                      « Reply #20 on: August 26, 2005, 01:24:45 PM »    Quote

________________________________________
there honestly wasn't much else but the center specializes in Infrared therepy. The also specify Peyronies Disease. Here's the link.

http://www.healthmedicineinstitute.com/body.cfm?id=49#infrared

these are all the conditions
 http://www.healthmedicineinstitute.com/body.cfm?id=8





Hawk                             « Reply #31 on: August 30, 2005, 09:13:29 PM »    Quote

________________________________________
Quote from: Joshua on August 30, 2005, 07:26:52 PM
I think it is important to remember: you are not trying to heat the skin to 102-103 you are trying to penetrate and heat the plaque nodule to that temp.
Joshua[/color]

First, I don't know about you, but if I heat a few inches deep thru the diameter of my penis, I am likely to be starting a fire on the other side.    The tunica is only a small fraction of an inch from the surface.  How deep can plaque go?  Next, are we SURE they used microwave?  I suspect they could only measure the temperature of what they applied to the skin.  I have had microwave on the knee for 30 minutes 3 times a week and there was no way to even estimate the internal temperature other than telling me to let them know if felt too hot.  I am only guessing, but I think they are talking about skin temperature and suggesting 30 minutes at that temp will penetrate the needed half an inch to the deepest plaque.  I cannot imagine that 106 degrees would do damage however, because many heat treatments exceed that temperature.

Bottom line: And this is important, we are all guessing.  Someone, go buy the report and tell us.  I am certain that the report is copyrighted information and canNOT be posted on the forum.







J            « Reply #34 on: August 31, 2005, 08:45:06 PM »    Quote

________________________________________
Guys, I'd be very careful about this.

Collagen (including the type involved in Peyronie's) is a protein.  Peyronies Disease is an unwanted accumulation of collagen molecules cross-linked in a chaotic way that makes them inelastic and unstretchable. All the cells of your body are also made up of protein molecules bonded in various ways.

In the cooking process described earlier, heat causes collagen bonds to break. But when cooking meat we aren't concerned about damage to the cells. It may be that there is a temperature range where the collagen bonds break but the protein structures in the surrounding cells aren't harmed.   But it seems to me that range might be narrow, and hard to determine except by destructive experiments. 

If heat is actually being successfully used to break up scar tissue, someone must have researched this carefully and I'm guessing that the units supplying the heat must be accurately calibrated.

If you go beyond this range and start to 'cook' the surrounding tissue it's going to become tougher and less elastic. Exactly what we don't want.








Joshua           « Reply #59 on: November 02, 2005, 07:15:16 PM »    Quote

________________________________________
Quote from: change2005 on November 01, 2005, 11:52:47 PM
Has anyone else had success with the Infra red light? It sounds like something that has a good chance of working.

I have never heard of anyone having success like this before.
If anyone has any new feedback I would love to hear it.

Joshua, are you still having success?
I must admit I have cut back on my heat treatments. I would estimate that I am down to once every two or three weeks. I plan resuming regular treatments soon. I think it was of huge benefit to me. I did see plaque nodule reduction during the time I was using it. I am assuming it was part of the reason. I did some light pulling and stretching of my penis while it was “under the light”. I have reduced my curve to almost a natural curve. I have no pain. My erections are 100%. My main Peyronies Disease symptoms are now some indentions where the missing plaque was. I also feel like I may have had about 3/5 to1 inch loss in length.
Yes, I do recommend heat therapy.






Joshua                     « Reply #61 on: November 03, 2005, 08:01:17 AM »    Quote

________________________________________
Quote from: steven on November 03, 2005, 12:27:32 AM
Hey Joshua,

Were you also trying the VED with the above treatment? or just the infared treatment alone?

Steven
I was not seriously using the VED. I did have one and played around with it every now and then. However, I am about to get serious with my VED treatment to attempt to eliminate the indentions.







Jaysom                   « Reply #79 on: November 26, 2005, 10:47:09 PM »    Quote

________________________________________
Joshua, I was very intrigued by your IR treatment comments and I have now done the 30-40 minutes 4 times (once every 3 days). I am using the same bulb as you and use between 12 and 18" as a good "warm" distance. After the first time, I most certainly noticed that "something" was going on with the marble-sized nodule. After the 4 treatments, I have seen some reduction in this nodule, but, more importantly to me, I have noticed a filling-in of an area that has been flat for the last 12 years, and overall, a much fuller erection.






Joshua             « Reply #98 on: February 25, 2006, 08:06:32 PM »    Quote

________________________________________
The infrared heat treatment might have benefited me. I realized a great reduction of plaque and curve while using it but I of course have no proof that it had anything to do with the heat treatments. I was very aggressive with the amount of heat and length of treatment. I suggest if you are not seeing any benefit to increase heat and time before you give up on it.






Flexor                     « Reply #118 on: March 22, 2006, 11:57:25 AM »    Quote

________________________________________
Interesting article on pentox at:

http://www.medicalnewstoday.com/medicalnews.php?newsid=38297









Roadblock                       « Reply #120 on: March 30, 2006, 10:54:15 PM »    Quote

________________________________________
Gents,

   Pentoxifylline also is active in reducing TGF-beta which has been implemented in the development of the fibrous plaques in Peyronies Disease. It seems to me that this is a reasonable treatment with a relatively small potential for serious side effects. Also, Dr. Lue is a well-respected physician in his field with an impressive CV. I know that I'm going to pursue the initiation of this medical therapy, and if any member has any experience with it please post!

roadblock




Tim468                           « Reply #132 on: April 26, 2006, 10:20:16 AM »    Quote

________________________________________
Let me try to copy/paste the results here - previously the table format looked weird so I will have to do a little typping and reformatting...

"Results:

"All patients in both groups showed complete disappearance of the pain after a few treatment sessions, with a reduced pain score at the end of treatment. Hyperthermia significantly reduced plaque size in 60% of the patients treated. Indeed, the plaques disappeared completely in 10 patients (35%), seven patients (25%) showed a volumetric reduction of the plaques and the plaques remained stable in the other 12 patients (40%) (Table I and Figure 1).

"The effects of hyperthermia on penile curvature are shown in Table I and Figure 1. There was a significant reduction in penile curvature after two cycles of treatment. Recurvatum completely disappeared in two patients and all patients reported better ‘elasticity’ of the treated area, which resulted in an improvement in intercourse.

"Verapamil did not significantly reduce either plaque size or penile curvature (Table I, Figure 1). None of  the patients in Group A presented disease progression, whereas disease progression was observed in five cases (20%) in Group B. Following two treatment sessions, only Group A patients showed an improvement in sexual performance, including improved erection and increased mean EF domain scores. The effects of treatment on right cavernosal artery PSV, EDV and IR, outlined in Table I and Figure 2, show that hyperthermia and verapamil did not significantly modify these haemodynamic parameters.

"All patients tolerated hyperthermia treatment very well with no side effects. However, five patients (20%) submitted to verapamil infiltrations presented side effects, including mild loss of libido in three patients and mild epigastralgia in two. Despite these side effects, none of the patients withdrew from treatment."

"Discussion:

"In this study, the authors have shown that, in patients with Peyronie’s disease, penile tissue can be safely, selectively, uniformly and effectively heated to 39–40 C using computercontrolled 40.68MHz microwaves, for an established period of time, according to the following characteristics: heating efficacy (ability to reach the required therapeutic temperature), homogeneity while heating the selected area, lack of over-heated zones, maintenance of the established temperature for the required time, selectivity (electromagnetic waves reach only the selected area) and ability to reproduce the same conditions for each treatment.

"Hyperthermia has two main mechanisms of action. The first consists of dilatation of the micro-vessels with increased arterial and venous blood flow in the treated area by generating heat with an increased amount of oxygen, red and white cell components to repair cell and tissue damage and better venous drainage to eliminate toxins and oedemas [15, 18]. The second consists of an increased rate of cell metabolism resulting from the increased temperature, with consequent improvement in repair of cell and tissue damage [22, 23].

"Hyperthermia, due to the positive effects previously outlined, is indicated mainly for a wide range of acute and chronic muscular and skeletal conditions due to vascular damage and resulting fibrosis involving tendons, ligaments and muscles [14–23].

"The advanced stage of Peyronie’s disease represents a clinical problem for which various types of treatment, including extracorporeal shock wave treatment, have been used [11, 12, 27]. To the authors’ knowledge, though, these were not controlled studies and these findings, therefore, cannot be considered valid. It should also be pointed out that, in 10–20% of patients, disease progresses despite treatment, thus precluding the possibility of surgically correcting the penile deformity.

"Patients suffering from advanced Peyronie’s disease could reap remarkable benefits from hyperthermia. On the one hand, the increased blood flow is responsible for a sort of ‘gymnastics’ of the penile vessels, with improved erection. On the other hand, the increased possibility of repairing cell and tissue damage could result in lysis or modification of the plaques as well as the fibrosis related to this condition. In regards to the analgesic effect, hyperthermia acts on the nerve endings, inducing production of endorphins and reducing afferent fibre transmission [19, 20].

"Hyperthermia may lead to changes in cell metabolism and treatment at a high temperature (45C) can result in irreversible cell damage, even cell necrosis, as reported in the literature [16–18]. However, at a lower temperature (39–42 C), provided the time of heating is limited, changes in cell metabolism do not lead to permanent cell damage. Mild heating promotes the above-mentioned effects that result in a beneficial therapeutic action. Indeed, it has been reported that damage incurred in tissue is related not only to temperature but also to length of heating time [28].

"A temperature of 39–40 C, with a limited time of heating, has been chosen in the present treatment protocol to avoid the risk of possible cell damage involving the underlying anatomical structures, with particular attention being focused on the penile neurovascular bundle and urethra. The plaques in the penis can never be more than a few mm from the surface and even the deepest are only a few mm between the albuginea and the skin. Therefore, the surface temperature is similar to the deep plaque temperature.

"The choice of a temperature of 39–40 C was based upon that used in studies carried out in the orthopaedic setting in which no adverse effects on the tissues had emerged and only beneficial effects had been recorded. The majority of investigations or studies on Peyronie’s disease are prospective series without controls and have been criticized for poor patient characterization [11, 12, 27]. The present study was a controlled study in which verapamil-treated patients acted as controls. Use of a positive control (verapamil infiltrations) was preferred to placebo, since these proved to be the most effective in the case of fibro-calcific scars. Also, verapamil infiltrations currently represent the treatment of choice in patients with advanced Peyronie’s disease [12].

"Patients were observed 6 months after the last treatment. This period of follow-up was a deliberate choice, as the improvements observed would be due to the effects of treatment and not to spontaneous changes in severity of disease, as may occur. Qualitative data (pain reduction and disease progression) were analysed before and after treatment using Fisher test. Quantitative data (plaque size, penile curvature and mean scores of EF domain, PSV, EDV, IR) were analysed before and after treatment using
Student t-test.

"Hyperthermia significantly reduced plaque size and penile curvature (Table I, Figure 1) and increased mean scores of EF domain (Table I, Figure 1), while verapamil did not cause any change in these parameters. Haemodynamic parameters were not significantly modified in either group (Table I, Figure 2). Hyperthermia caused significantly fewer side effects than verapamil infiltrations and was significantly more effective in preventing disease progression. There were no significant differences between the two groups in the reduction of pain during erection.

"Use of hyperthermia in andrological disorders, which has not previously been reported in the literature, showed encouraging results, suggesting that hyperthermia is an effective conservative treatment for advanced Peyronie’s disease because it is well tolerated and causes no serious side effects. It is of considerable benefit in reducing pain, plaque size and penile curvature and it increased the possibility of coitus in a significant number of patients. Moreover, considering the mechanism of action and results obtained, hyperthermia could also play an important role in the treatment of erectile dysfunction.

"The beneficial effects observed in this investigation were based upon direct observations on the patients during the treatment. This study described a completely new treatment approach and the ‘recognized mechanism’, as already pointed out, is ‘the increased ability in repairing cell and tissue lesions with lysis or modification of the plaques and fibrosis’.

"The beneficial effect of the hyperthermia treatment was documented via direct patient observation and assessment. A completely new treatment approach was described, that suggests microwave heat at a moderate thermal dose can increase the cell repair in plaque formation and in fibrosis. Studies involving more patients and longer follow-up are necessary to determine the optimal thermal dose, treatment protocol and efficacy level."

References:

1. Gelbard MK. The natural history of Peyronie’s disease. Journal of Urology 1990;144:1376–1379.
2. Davis C Jr. Microscopic pathology of Peyronie’s disease. Journal of Urology 1997;157:272–275.
Hyperthermia and Peyronie’s disease 373
3. Nachtsheim DA, Rearden A. Peyronie’s disease associated with an HLA Class II antigen HLA DQ5 implying
an autoimmune aetiology. Journal of Urology 1996;156:1330–1334.
4. Ralph DJ, Brooks MD, Bottazzo GF, Pryor JP. The treatment of Peyronie’s disease with tamoxifen. British
Journal of Urology 1992;70:648–651.
5. Gelbard MK, Linder A, Kaufman JJ. The use of collagenase in the treatment of Peyronie’s disease. Journal of
Urology 1985;134:280–283.
6. Giannotti P, Mancini P, Cuttano MG, Pistolesi MD, Ponti F, Morelli G, Ciardini E, Sicolo M, Farina F,
De Maria M. ESWL in the treatment of Peyronie’s disease: Preliminary results. Journal of Endourology
1993;7(Suppl.1).
7. Riedl C, Pfluger H. Iontophoretic treatment of Peyronie’s disease. Journal of Urology 1995;153:972.
8. Cavallini G, Biagiotti G, Kovereck A, Vitali G. Oral pronionyl-l-carnitine and intraplaque verapamil in the
therapy of advanced and resistant Peyronie’s disease. BJU International 2002;89:895–900.
9. Carson CC, Coughlin PW. Radiation therapy for Peyronie’s disease: is there a place? Journal of Urology
1985;34:684–686.
10. Incrocci L, Wijnmaalen A, Slob AK, Hop WC, Levendag PC. Low dose radiotherapy in 179 patients with
Peyronie’s disease: Treatment outcome and current sexual functioning. International Journal of Radiation
Oncology, Biology & Physics 2000;47:1353.
11. Hauck EW, Mueller O, Bschleipfer T, Schmelz U, Diemer T, Weidner W. Extracorporeal shock wave therapy
for Peyronie’s disease: Exploratory meta-analysis of clinical trials. Journal of Urology 2004;171:740–745.
12. Belgrano E, Breda G, Carmignani G, Giannotti P, Maver A, Mirone V, Soli M. Induratio penis plastica: Stato
dell’arte. Ospedaletto (PI): Pacini Editore; 1999.
13. Pontalti R, Cristoforetti L, Valdagni R, Antolini R. Absorption rare density computation in macrowave
hyperthermia by the finite-difference time-domain method. Physical Medicine Biology 1990;35:891–904.
14. Marino C, Mauro F. Razionale biologico dell’Ipertermia come modalita` terapeutica nella cura dei tumori.
Microonde, SMA Erectile Dysfunction. 1990;10:1–4.
15. Lehmann JF, Dundore DE, Esselman PC, Nelp WB. Microwave diathermy: Effects on experimental muscle
hematoma resolution. Archives of Physical Medicine Rehabilitation 1983;64:127–129.
16. Sichirollo AE, Zonca G, Ogno G. Quality control of a hyperthermia system. Advances in Experimental Medical
Biology 1990;267:161–166.
17. Noonan TJ, Best TM, Seebor AV, Garrett WE. Thermal effects on skeletal muscle tensile behaviour. American
Journal of Sports Medicine 1993;21:517–522.
18. Stryckler T, Malone T, Garrett WE. The effect of passive warming on muscle injury. American Journal of
Sports Medicine 1990;18:141–145.
19. Leon SA, Asbell SO, Edelstein G, Arastu HH, Daskal I, Sheenan S, Plunkett DH, Gutttmann GG, Packel AJ,
Leon O. Effects of hyperthermia on bone. Heating rate patterns induced by microwave irradiation in bone and
muscle phantoms. International Journal of Hyperthermia 1993;9:69–75.
20. Diederich CJ, Stauffer PR. Pre-clinical evaluation of a microwave planar array applicator for superficial
hyperthermia. International Journal of Hyperthermia 1993;9:227–246.
21. Leden UN, Herrick JF, Wakim KG, Krusen FH. Preliminary studies on the heating and circulating effects of
microwaves (radar). British Journal of Physical Medicine 1947;10:177–184.
22. Giombini A, Casciello G, Di Cesare MC, Di Cesare A, Dragoni S, Sorrenti D. A controlled study on the effects
of hyperthermia at 434MHz and conventional ultrasound upon muscle injuries in sport. Journal of Sports
Medicine & Physical Fitness 2001;41:521–527.
23. Ueberle F. Shock wave technology. In: Siebert W, Buch A, editors. Extracorporeal shock waves in
orthopaedics. Berlin: Springer; 1997. pp 59–87.
24. Rosen RC, Riley A, Wagner G, Osterloh IH, Kirkpatrick J, Mishra A. The International Index of Erectile
Function (IIEF): A multidimensional scale for assessment of erectile dysfunction. Urology 1997;49:822–830.
25. Kelami A. Autophotography in evaluation of functional penile disorders. Urology 1983;21:628–629.
26. Beers MH, Fletcher MB. The Merck manual. 17th Erectile Dysfunction. West Point: Merck and Co.; 1999.
27. Levine LA, Goldman KE, Greenfield JM. Experience with intraplaque injection of verapamil for Peyronie’s
disease. Journal of Urology 2002;168:621–626.
28. Dewhirst MW, Viglianti BL, Lora-Michiels M, Hanson M, Hoopes PJ. Basic principles of thermal dosimetry
and thermal thresholds for tissue damage from hyperthermia. International Journal of Hyperthermia
2003;19:267–294.

Here are the results, sort of in tabular form:
****************************************************************************
                                     Before                         After                          p value
Mean variable (SD) 
                                 A            B               A             B           Before vs      Before vs      A vs B
                                                                                            after A        after B

Penile curvature      50.8 (2.9)   49.8 (2.7)   22.4 (2.9)   47.9 (2.9)    <0.01          NS            <0.01
Plaque size, mm2     36.8 (3.    36.6 (3.4)   21.3 (6.1)   35.8 (3.6)    <0.01          NS            <0.01
Mean scores of
EF domain               22.1 (7.1)   22.4 (6.   25.5 (3.9)    22.8 (6.4)   <0.01          NS             <0.01
Right cavernosal
artery PSV, cms 1   35.5 (4.3)   35.3 (4.4)  35.6 (4.6)    35.5 (4.5)      NS           NS              NS
EDV, cm s 1           5.3 (3.5)      5.4 (3.5)    5.4 (3.7)      5.6 (3.      NS           NS              NS
RI, %                      85 (10.2)     84 (10.3)  84.6 (10.     83.6 (10.7)  NS           NS              NS
Left cavernosal
artery PSV, cms 1   35.7 (4.4)    35.6 (4.3)  35.4 (4.6)     35.2 (4.7)    NS           NS               NS
EDV, cm s 1             5.5 (3.3)      5.6 (3.3)   5.4 (3.       5.5 (3.7)    NS           NS               NS
RI, %                       83 (9.1)        82 (9.2)    81.9 (9.4)    83.4 (9.7)   NS          NS                NS
**************
NS¼not significant, PSV¼Peak systolic velocity, EDV¼End-diastolic velocity, RI¼Resistivity index.

What I think it means...

1) Arterial blood flow is not the issue and is not affected, but placque size and curvature is affected

2) How the heat is applied might make a big difference, and heat can have deleterious side effects, such as decreasing fertility by exposing gonads to direct heat.

3) The stats are OK, not great. They did not correct for multiple comparisons (called the Bonferroni correction), which makes the "power" of the study less - AND since the effects of verapamil were less than published data suggest should be seen, this increased the sensitivity of the results. IOW, if they had seen a good result in those injected with Verapamil, then the heat treated group would not have been statistically different from them.

The main thing I want to see is how heat could be safely applied without using their gizmo - which I have looked for online and cannt find.

Tim








Tim 468                             « Reply #134 on: April 26, 2006, 04:52:48 PM »    Quote

________________________________________
Quote
While that is true, even at the same rate or chance of improvement, who would not prefer hyperthermia to Verapalim Injections.  As a physician, do you have a guess why is this not more widely used.  Is it simply a lack of education or do economics factor in?
I think the main issues are as follows:

1) Hyperthermia does not make that much "sense", and it falls into a more non-traditional form of therapy. I believe that doctors often (irrationally) reject some ideas if they are not "scientific" enough.

2) This is a recent study and is not too well disseminated yet.

3) It was published ina second tier journal, and the discussion is spectacularly weak ("the increased blood flow is responsible for a sort of ‘gymnastics’ of the penile vessels" ??). Vague ruminations about "improved blood flow" do not at all give us a sense of physiology, or why it might work.

4) This falls into the category of a "good first report". How many good first reports have those of us watching this literature seen over the years? First it was POTABA, then vitamin E, then it was ultrasound, then it was the nest thing. Each great new thing being replaced by the next great thing - but none of them panning out. Just look at the "gold standard" of verapamil injections - no better with them!

A good rule of thumb, no matter how promising something looks, is to remember that just because a paper is the latest paper, does not mean it is the best paper writtin on a topic.

I like the idea of the tube of warm water - that could be pretty easily regulated to a set temperature. For instance, one could fill a tub of water to the desired temperature and sit in it, or use a VED to drwa up a flask-worth of hot water to soak just the penis in (and replace it as it cools). I am sure we can come up with all sorts of good ideas here...

I can tell you, though, that we will do things to ourselves that no Institutional Review Board would ever allow a doctor to try on a patient because of theoretical risks!

Tim - by the way, all the numbers that ended in "zero" and which were followed by a end-parenthesis sign, look like smiley faces in the data!








Percival              « Reply #214 on: August 20, 2006, 03:13:57 PM »    Quote

________________________________________
Has anyone noticed that the plaque arrives/worsens at times of great stress? Mine did, and eventually gave me a 90 degree upward bend. This was straightened by surgery - the Lue procedure with a venous graft. Prior to that, Potaba and Vitamin E had been ineffective in preventing further plaque.
Recently I took a beta blocker (Timolol) for glaucoma and even the tiny dose used in these eye drops caused the hang to be less full. I have since found out that this medication is not advised for those who have Peyronies. I have now changed eye-drops!
As beta blockers seem to reduce peripheral circulation, I have recently tried Ginkgo Biloba which, it is claimed, increases peripheral circulation. Sure enough, even at 2500 mg/day, it has given me a fuller hang - something to hold on to until the magic cure arrives!
Percival




Blink                         « Reply #215 on: August 20, 2006, 06:07:49 PM »    Quote

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Hi Percy, welcome aboard! I know that when the body is under great stress disease runs rampant. My peyronies plaques seemed to increase slightly recently. I am going through a divorce, her idea, and am under great stress. I have been taking L-Arginine to promote good blood flow. I know that exercise will help reduce stress and promote better blood flow also. At night, I've been taking 25mg of Trazedone. Trazedone helps me sleep, and also causes night erections. The fresh oxygenated blood flowing into the penis at night is replicating what came natural at a younger age and not under so much stress. I just got my soma correct erection device and have started to use it to straighten the penis. A lot of fellows report improvement using this device. I believe that using antioxidants, increasing blood flow, reshaping scar tissue, and eating good with exercise, should show some improvements. Even if I don't see any, my body is feeling much better, and I'm not as stressed, because I'm too busy to dwell on it. When all else fails, I pray a lot!  Keep the Faith...Blink






Percival                 « Reply #216 on: August 20, 2006, 07:03:39 PM »    Quote

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Blink
Thanks for that - I have some L-arginine on order. Also use a VED. Not sure about Trazodone - maybe I'll ask my doctor next time.
Percival






Blink                 « Reply #217 on: August 20, 2006, 08:07:58 PM »    Quote

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Percy, What I can tell you about trazedone is that it is far less expensive than the blue pills. If you are using viagra to achieve erections for treatment purposes, I would rather use trazedone. It is not habit forming, it does not have the adverse affects on blood pressure that viagra has, and you don't see blue when you take it. Any thing that affects my vision is not good for me. Trazedone costs about four dollars for a prescription. I don't think you can get one viagra for the same price. When I talked to my doc, I asked for 50mg tablets (the lowest dose), and cut them in half. I get two months supply of trazedone for 4 bucks! If you must take viagra for Erectile Dysfunction in order to have sex, then I guess that is what you must do. When I talked to my doc, I said that I wanted the trazedone for low level depression, to help with sleep, and for my peyronies disease. He gave it to me with no questions asked. He is aware that I'm a part of this group and that we as a whole have probably dug up more information than any of the docs. He has already referred someone to call me about peyronies. I believe that he will be one of the docs who will sign up for the forum. I will be visiting him again real soon to give him more info on OUR site.   Keep the Faith...Blink



Peterst                    « Reply #235 on: October 15, 2006, 09:10:08 PM »    Quote

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Hello,  I'm new to this site, but was wondering if anyone has used the Peyronie's Disease Institute and any of their treatment approaches?  The host, T.R. Herazy suggests an aggressive treatment using many alternative treatments.  Has anyone tried any of these with any good result?

Also, I can't figure out how to start a new topic.  I looked at all the helps, but I don't get the New Topic button.

Thanks
Tim






Liam                  « Reply #237 on: October 16, 2006, 06:07:43 AM »    Quote

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There is no
magic
happening at the Peyronies Disease Institute.  It appears to be a site promoting a book and some "explicit"  "how to" sex videos on their "sister" site.  I'm not trying to question the character of the owner of the site.  I just believe all the info is out there for free.

I am always skeptical of "helpful" sites that sell something.  Also, I never read one of the testimonials that said, "Thank You I am now 100% healed."



Liam





George999             « Reply #242 on: October 19, 2006, 01:06:17 PM »    Quote

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Quote
You are taking Neprinol.

Yes, but only one per day, not 9 or 10 as they advise.
Quote
Is is for Peyronies?

I take Neprinol because I like the ingredients and am too lazy to take a dozen other pills to provide them.  I had the Peyronies in mind when I started the Neprinol, but I am not taking it specifically for the Peyronies.
Quote
Has it made any difference?

Perhaps.  I really don't know because I have been taking more different supplements than Carter has pills as the saying goes.  My strategy has been to take a little bit of everything that either seems extremely interesting or has a degree of credible research behind it.  The result has been a tremendous improvement in my Peyronies to the point that, for all practical purposes, it is pretty much gone and forgotten, although a close look would reveal that it has left its mark.  Right now, I have quit all of those supplements to try to sort things out, and after a week off all the supplements, my Peyronies has not gotten worse.  So I am extremely happy about that.  I am convinced that the synergy behind all of those supplements has solved my Peyronies problems.  But I am not sure which supplements contributed what to the general outcome.  So the ultimate answer to your question is "I don't know".  I certainly hope it helped because it cost me almost as much as everything else put together.  So even if it helped, in retrospect, I'm not convinced that it was cost effective.  I would really like to see some truly independent testing to either prove or disprove its usefulness.  Until that happens I can only say yeah, I use it, but I'm not sure I would recommend it.
Quote
Have you tried other successful options?

I tend to take the PDI approach of using a barrage of supplements at once.  Where I strongly differ with PDI is 1) I look closely at the research first, I don't just take a given supplement on the basis of marketing or testimonials, 2) I look closely at the potential interactions and side effects first, there are some very promising supplements out there that I won't touch with a ten foot pole due the risks they present, and 3) I steer clear of 'mega-dosing'.  The "if a little bit helps, a lot should be the cure" approach is very seductive.  Too much of anything can get you in over your head fast (and empty your pocket even faster).  I should also add, that there comes a time when one should temporarily stop all the supplements and reassess things.  Otherwise, you can easily loose sight of the forest for the trees.   And as Liam points out, there are other products similar to Neprinol, like Fibrozym, which are much less expensive.  While the difference in ingredients are small, the larger difference is that Fibrozym has much less marketing pizzazz behind it and its maker, at least in my eyes, exhibits considerably more integrity as compared to the maker of Neprinol.  The maker of Fibrozym has been at this stuff for years and was one of the pioneers of enzyme therapy, yet, in comparison to the maker of Neprinol, they are very restrained in the claims and much more reasonable in their pricing.  And I can also tell you that, in my opinion Nattokinaise, on its own, is a great product, and its pricing is a bargain compared to Neprinol.  In fact, I have also been taking Nattokinaise.  So hope this is helpful,

- George







Howcanthisbe           « Reply #248 on: November 16, 2006, 07:46:41 PM »    Quote

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anyone tried penishealth.com? I have done some google searches and found good things about it. Heres one good thing from a forum post: http://forums.men.style.com/thread.jspa?messageID=60132

www.penishealth.com

I know these exercises can be dangerous. I really think they are like VED use, I think they could really help heal Peyronies Disease. Basically your just making new cells to increase penis size. Anyone ever tried this site?








Hawk                      « Reply #249 on: November 16, 2006, 09:03:11 PM »    Quote

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Quote from: howcanthisbe on November 16, 2006, 07:46:41 PM
anyone tried penishealth.com?

I know these exercises can be dangerous. I really think they are like VED use, I think they could really help heal Peyronies Disease. Basically your just making new cells to increase penis size.

HCTB, 

Are you serious?  Are you saying that as long as you have been here, you consider those good sites    They discuss penis pills   

Share the evidence that makes you think the exercises are like VED use, or that you are making "new cells".



In my opinion those sites are somewhere between laughable and lowlife preying on the desperate, insecure, unbalanced, and ignorant, in society.








Old Man                        « Reply #250 on: November 17, 2006, 12:16:09 PM »    Quote

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HCTB:

I echo Hawk's post below. Get real, listen to the advice of the guys on this forum who have been there and done that. Some of us have had Peyronies Disease since a very early age and have been through the wringer so to speak to arrive at where we are today. We know our way around in the Peyronies Disease world.

My best considered advice to you is listen to what is being told you on this forum and move on with some form of treatment(s) that have been presented here. Consult your uro/MD and listen to their advice if they are qualified in Peyronies Disease treatment.

Penis enhancement with the hand exercises shown on those sites has no value in comparison to the exercises done with the VEDs. Penis pills have not been proven to do anything more than take your dollars and line their pockets with you hard earned money.

There is an old saying that goes like this:  "A word to the wise is sufficient".

Old Man







Old Man                   « Reply #258 on: November 20, 2006, 02:19:10 PM »    Quote

________________________________________
Danny:

In the past, I have tried just about everything for relief of Peyronies Disease. The massaging therapy can be successful if you take it slow and easy, use plenty of lubricant and do not use too heavy pressure. I did them for quite a while before getting into the VED therapy cycles, but about the only thing the massaging did for the old tool was get it a little more stable when I went for an erection.

The jelqing methods shown on a lot of the web site ads can and will cause one more damage if they are followed to the letter and with the amount of pressure that some of them recommend. As far as I know, I have never had any contact with anyone who actually gained any dimensions over and above where they were before Peyronies Disease.

If you decide to try them, my considered advice to you is DO NOT USE TOO MUCH PRESSURE WITH YOUR "O" RING MADE WITH YOUR FOREFINGER AND THUMB. As I said above, use plenty lubricant and above all do a warm up session in a hot shower or hot clothes before starting the exercises.

The above are just my observations and comments based on what I have seen and heard other guys talk about. If I can help in any way, just let me know.

Regards, Old Man







DannyOcean             « Reply #267 on: December 14, 2006, 05:51:59 PM »    Quote

________________________________________
Hey all.  Just wanted to post on something that I think is helping quite a bit.  Starting a few weeks ago I begin doing a lot of self-massage in the groin/lower abdomen region.  As anyone who has studied massage knows, it's incredibly helpful for increasing circulation.  Since I couldn't find a (reputable  ) masseuse who would massage that region I figured I'd give it a go myself.

A few weeks later I'm hanging better than ever and having more frequent erections than I can remember in years.  Even though I haven't noticed any big changes in Peyronies Disease yet I do think that improving circulation and bloodflow in that region would make a ton of sense (after all, that's what Pentox does right?) and I don't think this could hurt.

Another thing that's interesting (and unrelated to Peyronies Disease) is that there is a theory espoused by many bodyworkers that "issues get trapped in the tissues" and throughout my life I've struggled with anxiety and a good deal of guilt/shame.  What I've noticed from yoga is that my hips/groin area is very tight and I was wondering if there was a connection.  Then I came across an instructional massage DVD that talked about this very fact and helped to confirm my theory.

Anyway, I'm rambling right now but this seems to me something that most likely won't hurt and could produce some great conditions for the healing of Peyronies Disease.  Let me know if any of y'all notice similar results to what I've noticed.






DannyOcean             « Reply #270 on: December 15, 2006, 09:51:31 PM »    Quote

________________________________________
It's interesting because I'm doing all those things (pentox/arginine/yoga).  I guess I just noticed the fullness since I started doing the groin massage but my guess is that it's probably a combination of all of those things.  I'm going to make 20 minutes of groin/lower abdomen massage a regular routine going forward.  It's a pretty accepted fact that massage helps a lot with other forms of injury so I don't see why this would be any different. 
Quote from: ComeBackid on December 14, 2006, 08:05:31 PM
Thanks for filling us in.  Actually I have talked to one other fellow (can't remember his name cause it was so long ago) who was doing the massage in the groin area.  He at that point had not seen any results, but it was early on in the game.  Keep us filled in and if your seeing more positive results as time passes. Are you taking any supplements such as l arginine, that may help your circulation goal as well.  Are you on the pentox?  When I started it I noticed an increase in bloodflow almost within days, it was pretty amazing you can tell its working or at least doing something.  I think we should look more into yoga and the potential benefits from that as well.

ComeBackid






ComeBackid                       « Reply #275 on: December 17 at 01:02:18 PM »    Quote

________________________________________
Danny,

I'm glad your noticing the same fullness I am, in better flaccid hang, and totally full erections, its like I'm on an ultra-viagra since I've started the pentox.  I've noticed this fullness from the pentox alone.  It would of been interesting if you had just started the pentox first to see if that gave you the fullness first, then added in the l arginine/ viagra/ groin massage.  I just say this cause there are so many variables in regards to this disease, and treatments. What you may conclude(that your massage is causing fullness) could be totally different than what I conclude( that pentox is causing my fullness).  Nonetheless my philosophy is if your on a protocol and anything is working- stay on everything and don't change a thing! Keep us informed if you continue to see positive results- us desperate folks like to hear the success stories! 

ComeBackid






DannyOcean               « Reply #276 on: December 17 at 02:30:17 PM »    Quote

________________________________________
Quote from: ComeBackid on Yesterday at 01:02:18 PM
Danny,

I'm glad your noticing the same fullness I am, in better flaccid hang, and totally full erections, its like I'm on an ultra-viagra...

I'm sure it probably is a combination of factors.  One of the reasons why I suspected that the self-massage was helping was that I noticed the dramatic increase in fullness within a few days of starting the self-massage (even though I've been on Pentox for several months).  Also, when I am massaging that area I get very full even if I am not touching the penis itself.  This could simply be a stimulation thing but either way it's cool by me. 

As for technique, I'd offer two things.  First, if you're not feeling pain you're probably not causing any damage.  The other side of that coin is that if anything does hurt then I would immediately back off.  Second, go to a massage therapist and get a deep tissue massage.  Notice how they massage other parts of your body and then try to imitate that on the groin and lower abdomen area. 

I'm actually contemplating starting massage school later this year because I think that there is a huge amount of benefit that massage brings to overall health.  So I hope to know a whole lot more at the end of 2007 than I do right now! 



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