Open Questions on Peyronies Disease (That won't fit under any of our current topics)

[jackp]

I was on Plavix just after my stents and was using the VED all wrong and caused a bad blister. The key is not to pump and just keep the pressure for a long time. Start slowly with just enough pressure to get a good seal. Pump and hold for 15-20 seconds and then release. Repeat for several minutes but do not pump to the point of pain or any discomfort.
Read old man's post on proper use of the VED. It will work.
Jackp

[Old Man]

isitgone:

Yes, you will do well to heed Jackp's caution about overpumping the pressure. Taking any blood thinners presents a different approach to VED therapy. Since the blood is thinned down somewhat and flows faster than when not using thinners, caution should be exercised in pumping vacuum. Many side effects can and will occur with the higher pressures.

As Jackp says, work slowly and methodically with the protocol whether you are using the one cylinder models or the three cylinder models. The small cylinder of any VED model requires more caution since the penis will be confined more and will have a greater pressure on the penile shaft overall. So, work with moderate pressures, watch for any symptom of edema, redness, any pain or discomfort and if they occur, wait until these have healed before resuming the therapy with less pressure.

The above was learned from experience first hand with my VED usage over a period of many years. So, keep a regular schedule of exercises and if you are following the 26 week protocol, don't skip any days. If for any reason you miss a week or more of the protocol, start over with week one again.

Best to you, Old Man

[isitgone]

Those Select Tension rings with the Vitality OTC look small and do not have a lot of stretch. Are they supposed to be many diameters smaller than the penis to hold the blood?  

[Old Man]

isitgone:

Yes, the tension rings are designed to be smaller than the penile shaft. If they were not smaller, they would do not good. They have to be tight enough to hold the blood that is pulled into the corporal chambers in order for the erection to be firmed up and held long enough to complete the sex act.

However, when using the tension rings one must be extremely careful not to use one that is actually too small which can and will result in further damage to the penis.

Extreme caution should be exercised at all times whether one is going for ED therapy or Peyronies Disease therapy. Remember that too high a pressure usually results in some form of damage.

Old Man

[thunder]

I just descovered last night I have the symptoms of this disease. I had noticed pain but was shocked when I saw an obvious bend. Looked it up on the internet and discovered what I now believe I have is Peyronie's Disease. Should I stop having sex and/or jacking off for awhile??? Been reading posts and will look for a good Dr, I live in Cleveland Ohio. Any advice is apreciated!

[Iceman]

old man - should I be wasting my time on Larginine if i am taking ALC + Pentox - or should I be taking LA + pentox and dump the ACL or do I take all 3 together - am i duplicating the supplements and wasting money and effort - i feel i am doing as much as I can with the ved on top of this - is there anything else i should be taking that will help??

[Old Man]

Iceman:

Have no clue about the supplements. You should be asking George999 about these as I consider him to the the "guru" in that department. He has a vast knowledge of supplements and should be able to put you on the right road with them.

Old Man

[bodoo2u]

Have any of you ever experienced a strange feeling in the area of your Peyronies Disease during strenuous exercise. Once, when I was doing leg extensions on a weight machine, It felt like electricity or tingling in my penis in the area of the plaque/scar tissue. The other day, when I helped someone move an entire household of furniture, I felt pressure in my penis. And no, I didn't strain myself too much; it just felt like some of the pressure was in my penis.

Is there a possibility that heavy lifting can have an adverse effect on Peyronies Disease? I sure hope not.

Bodoo

[miller798]

Ok, gentlemen,

Went to local urologist (at major medical center), seen by resident and attending physician, who both felt my plaque, and said that if I was not having pain, difficulty with intercourse, or ED, then I should watch and wait.  I have practically no curvature at this time, but I do have an indentation when erect.  Suggested next steps?  Try some Vit E on my own??

miller798

[Angus]

  You have recieved an unfortunately classic reply and recommendation. Many such recommendations from urologists are documented here on the forum by many men. You must choose what steps to take, if any, on your own. The steps to choose from are also documented on the forum. You must decide which direction you would like to take if you should choose to act on therapy. Vitamin E can do no harm... but you should read the supplements thread on the varied types of vitamin E and dosages. If you want to move forward with any of the therapies discussed in the forum, decide what you are comfortable with, choose the thread where your choice is discussed, read as much of the thread as possible, then post questions you may have.
  Watching, waiting and vitamin E is often the first thing recommended by a urologist; from there they sometimes move along to recommending surgery to those they feel this would work for. Since you are not in that category, watching and waiting, along with vitamin E, is the only other thing in the urologists choice of treatments more often than not. The therapies discussed and used in the forum certainly cause no harm when used with care, and one or more therapies may provide relief. If you decide to move forward, chime in with your thoughts.  

[George999]

Iceman,  My apologies for taking so long to answer your post.  Not so long ago, I would have advised you to continue with the other supplements.  But now I have some real concerns about ALC.  As you may or may not know, a few weeks ago I got really wacked with a reaction to it and I still am not sure what the longterm consequences of that reaction will be.  That experience has made me much more cautious about recommending ALC.  I got some really excruciating flu-like pain symptoms that I finally, after weeks, traced to the ALC.  I have not been able to find any reference on the web to such a risk from taking ALC.  In my case I was taking 1.5g per day.  I would advise anyone taking ALC to not go over 500mg per day on the dosage.  I would also advise anyone able to use Pentox instead of ALC to do so.  I am currently using high dosage Mangosteen extract while I await an appointment with Dr. Lue.  But high dosage Mangosteen extract may also have some degree of longterm toxicity and at this point I will feel much more comfortable with Pentox, in which case I will greatly reduce my intake of Mangosteen.  So my advice would definitely be to dump the ALC.  The L-Arg should probably be judged on its own merits.  If you can get along without it, so much the better.  But if stopping it makes things worse, probably better to continue.  In my case, I have stopped the VasoFlow at this point simply because my libido is in top shape and the VasoFlow no longer seems necessary.  In fact, I had already stopped the VasoFlow when I got the ALC reaction.  Another thing that I have to say bothers me about ALC is the fact that I have NEVER seen its pharmacology clearly explained.  It is kind of a mysterious substance in that regard.  It DOES work and it works very well, or it least it did for me.  But no one seems to know quite how it works.  We know, for example, that it is NOT an anti-inflammatory.  Drugs that are not clearly understood really bother me in terms of their potential safety aspects.  When you don't know how something is achieving what it is achieving, that is a red flag because you really don't know what price you might be paying for what you are getting.  - George

old man - should I be wasting my time on Larginine if i am taking ALC + Pentox - or should I be taking LA + pentox and dump the ACL or do I take all 3 together - am i duplicating the supplements and wasting money and effort - i feel i am doing as much as I can with the ved on top of this - is there anything else i should be taking that will help??

[jayhawk]

George999,
I had the same reaction you had with ALC, I quit taking it about 8 weeks ago and the symptoms went away. Pentox appears to be the most effective treatment for me. Supplements have not seem to be very effective. I have read that Mangosteen kills fruit flys, this is not a good sign for consumption if you ask me!
Jayhawk
   

[George999]

Thanks so much for sharing that.  I think it is extremely important that we document these kinds of things for the benefit of those coming behind us.  - George

[Hitman]

well I've had a positive result from ALC/ALA combo regarding my pain so I plan to continue taking it until otherwise. It should be ideally taken with ALA to quench the free radicals.

[George999]

Just for the record, I was taking ALA (and a number of other anti-oxidants) along with ALC when I encountered the problem.  Hopefully, it will not affect you.  But IF you have flu like leg pain or any other type of flu like pain sensation, suspect the ALC.  As I said before, it DOES work, and for many of us that can't obtain Pentox, there simply aren't that many choices right now.  My big concern about ALC is that the Acetyl component is related to Acetic Acid and my understanding is that metabolic processes actually dump Acetic Acid in the bloodstream when we are taking ALC.  This must then be cleared by the kidneys.  That is why ALC tends to produce a distinctive oder in the urine.  The problem here is that if the kidneys fall behind in clearing the acetic acid, one can experience a toxic accumulation or buildup in the bloodstream.  This could be really hard on our internal organs.  The kidneys and liver might be quite vulnerable to damage from such a buildup, so I would advise caution.  This is only my understanding of how ALC gets metabolized, it may or may not be correct.  If ANYONE here knows any more about this issue, please by all means share that information.  I would be delighted to be corrected on this if I am wrong.  - George

[bodoo2u]

You all are scaring the HECK out of me with all the negative talk about ALC.  I take 1000mg every other day, along with Pentox, which I have been taking sine June 19. I might stop taking the ALC until more people on the forum can post comments on how it works.

I asked earlier and no one answered, so I'll ask again. Can anyone tell me how long it takes before Pentox changes the shape of the blood cells? I really want to know. Also, if I have an job interview and do not want the lab to detect it in my system, how many days do I have to abstain so that it will not appear in my urine sample. I wouldn't want the lab folks to tell the employer, because the employer might think I have a serious medical problem.

Am I overly cautious or what? LOL

[Iceman]

George999 - im having NO issues with ALC - I find the ALC + Arginine + Pentox a good combo... - anything to take the pain away...

also I am seeing my uro next monday - should i ask him to prescribe me Pirfenidone?? - ive read on this forum that it may help - hes a cool uro and is open to ideas..please let me know.

thx

[George999]

You all are scaring the HECK out of me with all the negative talk about ALC.  I take 1000mg every other day, along with Pentox, which I have been taking sine June 19. I might stop taking the ALC until more people on the forum can post comments on how it works.

All we are suggesting here is to KNOW that ALC can cause problems and to be cautious.  Caution might mean to be alert for any flu like symptoms, to be alert to any burning sensation that follows arteries or veins, or to get occasional blood and/or urine tests done to make sure that nothing is amiss.  In any case, just KNOW that like many medications, this supplement CAN cause serious side effects.

I asked earlier and no one answered, so I'll ask again. Can anyone tell me how long it takes before Pentox changes the shape of the blood cells? I really want to know. Also, if I have an job interview and do not want the lab to detect it in my system, how many days do I have to abstain so that it will not appear in my urine sample. I wouldn't want the lab folks to tell the employer, because the employer might think I have a serious medical problem.

Pentox should cause beneficial changes in blood cell shape right away.  But the beneficial effects of those changes might not be apparent right away because it takes time for tissue to heal even when the environment that promotes healing is restored.  As for the job interview, employers usually are looking for illicit drugs, not things like Pentox.  I don't think you need to worry about this, but that is only my opinion.

Am I overly cautious or what? LOL

When it comes to ALC, I think you need to be cautious.  As far as Pentox showing up in an employment screening, I think  you are being overly cautious.  Two thirds of the population is on some sort of prescription drug(s).  Employers EXPECT this.  Its a fact of life.  - George

George999 - im having NO issues with ALC - I find the ALC + Arginine + Pentox a good combo... - anything to take the pain away...

As above, just be alert to possible problems.

also I am seeing my uro next monday - should i ask him to prescribe me Pirfenidone?? - ive read on this forum that it may help - hes a cool uro and is open to ideas..please let me know.

I don't care how cool your uro is, he is not going to prescribe Perfinidone for you.  Perfinidone is still in Phase III testing.  It is not approved to treat anything at this point, which means even the pharmacies don't have it, which means a prescription would be useless.  People who are getting Perfinidone at this point are obtaining it directly from the manufacturer which basically requires a dispensation from God.  And I guarantee you, you won't get one.  But it is indeed looking very good and should be approved within the next few years for IPF, which means that the pharmacies will begin to stock and theoretically, if your uro was cool enough and daring enough, he could prescribe it to you off-label.  The next challenge would be figuring out how to pay for it since it will probably sell for $250 per pill.    - George

thx
[/quote]

[Hawk]

Guys,

I remind all to CHANGE THE SUBJECT OF YOUR POSTS TO REFLECT WHAT YOU ARE POSTING ABOUT It would help an over worked administrator and all who read this forum.

About ALC.  I have taken 3000 mg a day for long periods with zero side effects.  I find nothing indicating the connection to the symptoms George or Jayhawk report.  Does that prove it has no side effects?  The answer is clearly "NO", but as George pointed out, neither does isolated anecdotal reports of 2 people who think the ALC caused the symptoms they experienced.  ALC is used with positive results for several health conditions.  None of my extensive reading from objective sources has ever suggested such side effects.  I have also never read anything even suggesting the metabolic breakdown.

My big concern about ALC is that the Acetyl component is related to Acetic Acid and my understanding is that metabolic processes actually dump Acetic Acid in the bloodstream when we are taking ALC.  This must then be cleared by the kidneys.  That is why ALC tends to produce a distinctive oder in the urine.  The problem here is that if the kidneys fall behind in clearing the acetic acid, one can experience a toxic accumulation or buildup in the bloodstream.  This could be really hard on our internal organs.  The kidneys and liver might be quite vulnerable to damage from such a buildup, so I would advise caution.  This is only my understanding of how ALC gets metabolized, it may or may not be correct.

I appreciate George reporting his suspicions.  It is important to weigh that information with the fact that sites reporting side effects and over-dose information on supplements, state that ALC is very safe at high dosage.

[Tim468]

I think that there are two issues here, perhaps three.

First, ALC may have caused a certain side effect in George. Now, I say "may" because, as George will admit, this is not science and we are not gathering statistics. Rather, he is trying to interpret the meaning of his physical sensations in light of lifestyle choices he is making. Thus, coming off of a medication and having resolution of symptoms, and having them come back when you resume the medication is highly suggestive of a relationship, but not "proof". Proof is hard to find in one individual. Nevertheless, we need to alway try to make connections - just realize we may make mistakes in interpretation.

An example of this is the use of leeches. Leeches were used for blood letting, and oddly enough, patients often improved. Now, we mostly think that it was coincidence - improvement followed applying leeches, but was not caused by the leeches. it took over 300 years for them to figure that one out.

Secondly, we are here to learn from each other - with the caveat that the other may be  "wrong", or what is right for him is wrong for you. IOW, ALC may cause a side effect in George, but in almost no one else. Nevertheless, all we can do here is our best. Even though the medical literature suggests that intralesional verapamil is a good thing, the completely non-scientific assessment of that by members of the board drives newcomers away from that choice. If we affect behaviors because of our non-scientific opinions, then why should George's opinion be discounted because he is the only one to share his experience here.

I think the answer to this is that if a problem (or good outcome) is seen by but one person, it makes sense that it is less likely to happen to all of us. Kimo got better with verapamil cream - how many of us can say that?

My reading about ALC is that this side effect is not reported at all. If two alert guys come here to post about it, then we need to pay attention. But in the end, we need to go by what our bodies tell us. I could surmise a method for it to hurt one guy but not another, but I'd be guessing...

Finally, I think that readers here need to work on not catastrophising information learned here. If someone reports a side effect, then listen to it and think it through. If you are doing well, then perhaps you can relax a bit. I took ALC for a long time, but it did not help me at all (at least, I think it didn't), so I stopped it. No side effects except a sort of giddy excitement when I took it on an empty stomach - a feeling that subsided with time.

Tim

T

[George999]

Tim and Hawk,  Thanks for the additional perspective on ALC.  Certainly my intention is not to spread panic, but it is sometimes difficult to state something strongly enough to get people's attention and yet include enough disclaimers to avoid mass panic.  I always try my best to achieve that lofty goal, but would be the first to admit that I often fall short.  I would also admit that their is a whole lot I don't know about this.  It could be a result of interaction between multiple supplements, interaction between ALC and some unique metabolic condition that I might have or any one of a number of other possibilities including that I could have been unlucky enough to get a contaminated or mislabeled product.  I think one of my major concerns here is that the ONLY indications were flu-like.  In my case I continued the ALC for weeks because flu-like symptoms are common and because absolutely nothing like this is documented relating to ALC.  So, I think it is important for anyone taking ALC long-term to be aware of this and to realize if it happens to them it *might* be the ALC.  On the other hand, what you have pointed out about ALC's safety record is comforting and would lead me to back off on my assertion that if you don't absolutely need it, don't take it.  Instead, I would say at this point, take it if it is helpful, but be aware of this potential side-effect.  There is a lot of wisdom in group thinking and that is one of the reasons that I value this forum so highly.  Thank you both so much for taking the time to enrich our understanding on this issue.  I am here to learn as well as to share!  - George

[aerosick]

Assuming the following information is accurate, rather than helping Peyronies Disease through antibacterial activity, these antibiotics are likely having a disrupting effect on the collagen/scar process.

Here is some information off of a couple websites.

Fluoroquinolones are synthetic antibiotics that effectively inhibit the metabolism, proliferation, and invasion of fibroblast cells reducing scar tissue formation. This technology differs markedly from other methods of scar tissue prevention by providing for the systemic delivery of a fluoroquinolone by oral or intravenous administration. It exploits the discovery that fluoroquinolones found at serum levels following recommended oral and intravenous dosing have an inhibitory effect on fibroblast metabolism and proliferation, as well as matrix, collagen, and proteoglycan syntheses.


The following antibiotics are Fluoroquinolones and interfere with fibrin formation:

   * Avelox 6
   * Cipro 1
   * Cipro I.V. 1
   * Floxin 8
   * Floxin I.V. 8
   * Levaquin 4
   * Maxaquin 5
   * Noroxin 7
   * Tequin 3

There is some info on a commercial site www.careforscar.com

FDA issues warning on Cipro, similar antibiotics

Tue Jul 8, 11:25 AM ET

WASHINGTON - Federal drug safety officials have imposed the government's most urgent warning on Cipro and similar antibiotics, citing risks that they can cause tendon ruptures, a serious injury that leaves some patients incapacitated.

The Food and Drug Administration on Tuesday ordered makers of flouroquinolone drugs — a potent class of antibiotics — to add a 'black box' warning to their products, which include Cipro, Levaquin, Floxin and other medications.

Patients should immediately stop taking the medications if they develop any tendon pain, swelling or inflammation.

[Hawk]

Aerosick, you are very correct.  The warning about the side effect you mention, has been on cipro and related drugs for years (at least 5 years).  Before I understood that these drugs disrupt certain collagen formation I always wondered how an antibiotic could impact a tendon.  That was before I ever had Peyronies Disease.  I think it is to be expected that anything that systemically disrupts collagen formation could have some potential unwanted side effects.  It does however speak to strong evidence that it could disrupt Peyronies Disease plaque formation.

Cipro is still a very commonly prescribed drug for everything from prostate infections to anthrax exposure.

[Tim468]

Funny to see the post here about Cipro. I give it to a lot of patients and we are gearing up for the inevitable phone calls about ruptured achilles tendons (not one of which I have seen personally).

So I log on here and see that Cipro might be able to play a role in decreasing scar formation in Peyronie's disease!

::sigh:: - see how complicated this gets?

And don't forget - many drugs have more than one effect. Zyvox, now a useful antibiotic, was first tested as an antidepressant,

Tim

[hornman]

I was on cipro in the beginning stages of my peyronies because the uro thought I had Prostatitus.  I still went on to develope plaque along with a dent and hourglass shape.  I also did develope pain in my joints and I,m sorry to say a sore moist rectum which I still have 5 months later.  Cipro is wicked stuff.  I don't think I would use it again.

[phil]

My uro also thought I had a prostate infection and I was on cipro, levaquin, and tequin.  I did not develop any curvature until 1 yr after pain started. The antibiotics probably helped for the time I took them.

[George999]

You know, in a sense, I think this is a somewhat pointless discussion, because even in Cipro were a perfect Peyronies drug (which we all know it is not), it would not be used for Peyronies because it is a valuable antibiotic and subverting it for use against Peyronies would devalue it as an antibiotic.  You simply cannot prescribe antibiotics for long term use without generating drug resistance on the part of dangerous microbes.  So, while all this is interesting, it is not terribly useful information.  - George

[Tim468]

George, I do not think that anyone will end up using Cipro for Peyronie's, but I do think that the discussion is valid. And I would not hesitate to take it if it would cure my Peyronies Disease.

Tim

[Iceman]

oldman or tim246 - i just found a responce from Dr Lue from when I went to see him regarding my Peyronies Disease, it goes like this:  'Yours is not a typical Peyronie's disease. It is a septal fibrosis after minor injury to the penis. If I recommend surgery, it will be minor procedure to correct whatever is bothering you at that time. It can recur if you injury the penis again in the future. '

Im not sure what this means - have you heard of it - does this mean I dont have full Peyronies Disease - and should I be using a VED if this is the case..

his response also included:


Department of Urology, University of California-San Francisco, San Francisco, California 94143-0738, USA.
PURPOSE: Classically Peyronie's disease presents with penile curvature and/or pain, and is associated with a palpable penile plaque. We frequently examine patients with suspected Peyronie's disease ultrasonographically and have noted a subset of patients in whom we could identify only a circumscribed septal lesion. We identified characteristics of these patients. MATERIALS AND METHODS: Of our series of approximately 650 patients with Peyronie's disease 47 were identified with these lesions. RESULTS: Of the 47 patients 22 presented with penile curvature with or without accompanying or preceding pain. Of the 47 patients 17 had a significant history of trauma, although only had the classic stigmata of penile fracture. A total of 16 patients had no history of curvature, 7 presented with only penile shortening or focal lack of rigidity and 5 were incidentally found to have lesions during assessment for other complaints. Three patients presenting after trauma were noted to have septal liquefied hematomas, which we aspirated under ultrasound guidance. Followup ultrasound revealed minimal septal thickening. In 1 of these patients the hematoma was adjacent to more typical-appearing septal fibrosis. CONCLUSIONS: We theorize that these hematomas are due to septal fractures and may represent a forme fruste or possibly a precursor lesion of more typical septal fibrosis. Ultrasonographic evaluation may allow earlier identification and treatment of occult septal injuries or lesions and prevent subsequent fibrosis and its associated symptoms.

[Old Man]

Iceman:

Based on my experience with working with many guys with Peyronies Disease and those using the VED as well as other methods of therapy, I know of no reason why using the VED under moderate conditions would cause any further complications.

Again though, I urge all users of the VED therapy protocol to use caution if their approach to VED usage. VED therapy for Peyronies Disease is definitely where less is usually better than more. So, use moderate vacuum pressure and do not over over pump at any time. Any pain or discomfort should be the warning sign that too much pressure or some other problem has occurred.

I would say continue the VED therapy protocol unless you are experiencing problem of any kind.

Old Man

[Iceman]

thx oldman - have you heard of septal fibrosis??

[Old Man]

Iceman:

Yes, that is the fibrosis that occurs on the septum portion of one's penis. It can be caused by injury/trauma to the penis as the result of any accident in the groin area. It can also be caused by microtrauma from rough sex or heavy sexual activity over a period of time.

It is quite similar in nature to any other fibrosis that can occur in the penis. However, it may take longer to see any results from VED therapy or any other form of therapy due to it being more or less vertical between the two corporal chambers.

Old Man

[Tim468]

I would recommend getting the full text version of Lue's article on septal fibrosis and reading it carefully. It will tell you what you need to know (plus some). Take your time, look up medical terms that you do not know, and take the time to understand it - I think it is a very good article, but frequently not read completely or understood by many (for reasons I do not get).

Tim

[Iceman]

oldman - does this mean I wont see any benefit or is it just a matter of time for me?? - so does the 26 week protocol mean it has to be done again with VED usage??

Have you heard or spoken to anyone whos had this?? - what im trying to say is that does this mean i am stuffed and theres no hope?? - i mean i am trying everything mention here...

[Iceman]

tim468 - do you know how to get this article - is there a link i can go to??

[Old Man]

Iceman:

By all means continue your VED usage with the 26 week protocol. If it does nothing more than keep a good blood supply flow into your erectile chambers, it is worth the effort. However, I would dare say that you will see some benefits with the septal issue also.

There are probably more of the septal plaques than we realize. Plaque has a way of appearing in various ways and in many places, especially in one's penis.

This does not mean that you are doomed so to speak, consider it as just another problem to overcome. I know that you should keep up any and all treatments/therapy you are doing.

Old Man

[Iceman]

thx oldman - your words keep me strong...

[Old Man]

Iceman:

No problem, just keep the faith and something good will happen for you.

Old Man

[Tim468]

I googled Lue septal fibrosis Peyronie's and got the following links:

http://www.medicalnewstoday.com/articles/62103.php

http://urology.ucsf.edu/faculty/facLue_pubs.html

I can get to the article, but it does not work unless you are with a medical school library (as am I).

Tim

[phil]

Re:antibiotic use.

I think the taking of antibiotics helped to hold off the developing of a plaque and curvature.  I'm not advocating taking cipro because it is a very powerful antibiotic that has some side effects.  I did take ampicillin and one other one.  If a low dose may forestall developing Peyronies Disease it is worth noting.  At the time if I knew that taking it might be helping my developing case of Peyronies Disease it might have been worth trying a low dose maintenance program.  Plus, I don't think anyone has totally ruled out, as completely impossible,  an infectious cause for some peyronies cases. I'm not saying that's what happened.  More likely the antibiotic interfered with the collagen and scar formation.  

[Tim468]

Interesting observations Phil. However, I don't think that ampicillin/amoxicillin is comparable to Cipro when it comes to an effect on collagen formation.

The thought about a low grade infection is intriguing. I think some have thought of this in the past, but epidemiological studies did not support Peyronies Disease being related to a sexually transmitted disease, though it could be a different sort of infection (not transmitted sexually). Remember how far-fetched it was to imagine that ulcers might be due to infections (everyone blamed stress and acidic foods), but it is now accepted that helicobacter pylori causes this.

Finally, I just finished reading a good article on why fluoroquinolones (including cipro)are not as bad for tendons as people are saying - the risk is primarily for those with renal failure and/or concurrent use of steroids. Here is the abstract:

"With the expanded use of fluoroquinolones for the treatment of community-acquired respiratory infections and reports of tendon injury linked to the use of these agents, we reviewed the literature to investigate the frequency and strength of this association. Ninety-eight case reports were available for review. The incidence of tendon injury associated with fluoroquinolone use is low in a healthy population but increases in patients who have renal dysfunction, who are undergoing hemodialysis, or who have received renal transplants. Pefloxacin and ciprofloxacin were most frequently implicated, but tendon injury was reported with most fluoroquinolones. The median duration of fluoroquinolone treatment before the onset of tendon injury was 8 days, although symptoms occurred as early as 2 hours after the first dose and as late as 6 months after treatment was stopped. Up to one-half of patients experienced tendon rupture, and almost one-third received long-term corticosteroid therapy. Tendon injury associated with fluoroquinolone use is significant, and risk factors such as renal disease or concurrent corticosteroid use must be considered when these agents are prescribed."

Tim

[phil]

Tim,

Back in 2006 in the prostate subject area I related that my Peyronies Disease started the same time as my infection.  I believe Angus also had a similar experience, and over the years maybe one or two others had mentioned similar coincidences.  Yes, ulcers caused by bacteria! amazing when you think about all the studies, upper GI's, scopes, etc and antacids, tagamet etc and millions of people over the years with ulcers being treated and no detection of an infectious agent.
I took cipro for 2 weeks, followed by levaquin for 21 days, followed by tequin for 30 days.  I developed muscular pain and so after a vas sample my uro switched me to ampicillin for 60 days to knock it out.  I had several positive cultures over that time for enterococcus.  I know staph causes scarring in certain infections.   Who knows?

Phil

[sflo]

Hello all im pretty new to the forum.  I am kind of in a predicament and need help. I got peyroines not too long ago maybe 10 months ago.  I am 21. I started taking vitamin E in combo with ALC, enzymes and what not. My uro recently prescribed me trental and said i should be fine with that and ALC, but i was still seeing problems with my skin and face especially. The plaques started to go away and my monster one started to go away as well. I started to see serious side effects though. My face started to scar like acne scarring but without acne, just skin loss. I also started to wrinkle on my face and body as well. even holes of loss skin on my body although small but still there. I started to put two and two together preformed some reasearch and realized that it was all the supplements because they inhibit collagen formation and inhibit fibroblasts information.  

I tested my idea by gettin off everything, and noticed my skin get better imediatley, but my penis got worse. aka shrinkage, and distrotion. But once back on i see increased gains in normal size and shape.  I have been going on and off to test this and I believe I am correct. Between researching every supplement and its affects on other parts of the body, it totally makes sense. other people  have been on these supplements and what not and take many at once and have not had such effects.

Most importantly I realize vitamin E is truly very effective for me, because once on it i feel the blood flow, and the plaques soften and diminish. I recently tried dmso with vitamin E tablet popped open applied topically and it worked wonders for me. No lie. This was not natural healing either because once off everything I lost serious length, and girth, but regained it once I got back on.  I guess because I am young and my body reacts strongly to everything I take. This is the catch 22 though. It really has affected my face and skin over my body bad. I really dont know what to do.

I have contacted old man and looked into VED to try and maybe attack it that way. Just kinda torn at this point I posted earlier with my problem but no one has commented and really need some advice. I really know I can combat this monster, but it will leave me with other battle scars literally. I know some might look at this and scoff and think i should be happy to have such pronounced effects to the supplements  to alleviate peyroines but again my face is very important to me as well as my body and I dont want it to be destroyed in the process. I have went to the derm too and  of course she said get off everything except a multi, and I should see a lota of healing in my skin. But again what about my member???I am expected to meet with Dr mulhall the peyroines specialist at Cornell.

I thought topically would be the way to go hence the DMSO and vitamin E but I instantly saw affects in my face due to the strong penetrating ability of DMSO. Can anyone give me some advice or what not. I kno my case seems truly unique but I would appreciate it.

sflo  

[George999]

My uro recently prescribed me trental and said i should be fine with that and ALC, but i was still seeing problems with my skin and face especially.

I have went to the derm too and  of course she said get off everything except a multi, and I should see a lota of healing in my skin.

sflo,  If your dermatologist really told you to quit Trental after the urologist prescribed it for you, you need to find another dermatologist fast because what this one is recommending is not ethical.  If, on the other hand, the dermatologist was only referring to the supplements, that is a sign that the dermatologist is simply being lazy and I would STILL look for another dermatologist.  All of the supplements and the Trental have completely different pharmacologies.  The contention that there is some sort of Collagen link between them that is causing your problem is too simplistic to be believable.  The human body is more complex than that.  One or more of the supplements MAY be causing this problem.  But simply dropping everything, especially dropping the Trental, is NOT the solution to your problem.  - George

[Tim468]

sflo,

I would do what the dermatologist suggested - for a week. Once I saw improvement in the face, I would start to add back medications one at a time. It seems that you have been trying this approach sort of. I would start with the most important ones first (ie the pentox). Hopefully, as you go, you will figure out a balance.

This raises a philosophical question - would you rather save your face or your penis? Wow - what a decision!

If you face seems reparable, then I would favor working on my penis, and assume that I could remedy the face later. Or vice versa. If I had to make a choice, I am not sure how it would go.

Tim

[sflo]

yeah its amazing and annoying because I know I can combat this thing. My penis is very responsive to the therapies when i use em I see the diff. Once i get off them I cant even maintain an erection just to give u an idea how fast the progression is occuring. my skin is important and i always had great skin, and my face especially.  I really dont kno. By the way what has been most effective for me is  vitamin E tablet popped open while rubbing in dmso. More than pentox I would say.  I literally saw such results. Again , yeah i am trying to figure it out.  I dunno. I am considering just going witha  VED, and hitting it like that because although some people argue about pharmacology and collagen content it makes perfect sense. Hence why some people saw no effect with vitamin E while others it worked. Dunno. I will keep you posted, and try to figure it out. I am debating too, should i just hit the meds hard, take it to my face and then hope it heals after or what lol? at least with the VED (which i am waiting on cuz i cant afford at the moment), I wont be throwing off my internal chemistry and just hitting it like physical therapy so to speak. Keep u guys posted.

[George999]

sflo,  My argument here is that Collagen doesn't deposit and get blown away in a period of days no matter what your age is.  So a lump that goes away in weeks or less after starting Pentox is NOT Collagen.  Likewise, the changes in your skin are NOT related to Collagen changes.  The time frame is simply to short for that to happen.  But lumps CAN be caused by inflammation, and Pentox is a major inhibitor of inflammation far in excess of whatever effects it may have on Collagen.  - George

[hornman]

CONCERNING THE PLAQUE. I have noticed that the small bumps I can feel in my flaccid state grow to be a much larger mass that surrounds the base of my member when erect. This creates the hourglass look.  The base is wider than normal and the top half is narrower.  Would this be typical for peyronies?

[Ralf3]

I took cipro for 2 weeks, followed by levaquin for 21 days, followed by tequin for 30 days.  I developed muscular pain and so after a vas sample my uro switched me to ampicillin for 60 days to knock it out.  I had several positive cultures over that time for enterococcus.  I know staph causes scarring in certain infections.   Who knows?

Phil

Phil, I am not aware of any relation of this to scarring condition in my penis tissue, but they discovered Staphylococcus aureus on my glans short after the scarring onset. The doctor told me that Staph could be also inside the penis, but didn`t do anything and sent me home (!!). I applied some creames to the glans, prescribed by dermatologist, but no positive reaction as well as there is no improvement in the scarring    
But I think it probably is connected...

[Tim468]

Wow, some diverse themes here!

Staph infection in the tissue could certainly lead to damage to the tissue, wherever it is in the body. So direct tissue damage could do it. Some of us have wondered whether or not generalized inflammation in the body triggered by infection elsewhere might be linked to Peyronie's Disease (the way that chronic gum disease causes heart disease).

In that case, treatment with antibiotics is important for reducing the infection itself.  In other situations, we been talking about how antibiotics, used to treat infections, may help Peyronie's as a side effect of the antibiotic. These represent to very different ways antibiotics could be helpful for Peyronie's disease.

Hornman,

Small bumps that get larger with erection does not sound like Peyronie's disease to me - it sounds like erectile tissue. Since what you are describing sounds like it is outside of the Tunica it could be vascular engorgement.

Tim