Any advice?

[artguy]

I am 43 years old, married with one daughter that is going to be 3 in a few months. I was diagnosed with Peyronies Disease in July of 2012. It started out as a sharp pain I would get when erect. I let this go for about three weeks to see if it would go away. When it didn't I started to do some research online and talked to a doctor who said it may be Peyronies Disease. I ended up going to a urologist who said it is Peyronies Disease and that basically there is nothing that can be done about it. He offered one drug that you have to take like 20 some times a day and said it usually causes intestinal issues. He also said that if it gets too bad and I can not have sex anymore I could get surgery but advised against it.

Needless to say I did not want to do surgery and the drug he suggested just didn't seem right so I decided to go to a Naturalist who is also does acupuncture. She put me on an anti inflammatory diet (dairy free and glutton free) and I started taking the following since August 2012:
Fish Oil - 2100mg a day
AscorbateC - 3000mg a day
Nattokinase - 100mg 4 times a day
L-Carnitine Tartrate - 1400mg a day
Vitamin E - 4000mg a day
then I rotate every ten days - Wobenzym - 2 tablets 3 times a day and Vitalzym - 2 tablets 3 times a day

After doing this for a few weeks the pain went away but a small hard lump appeared about the size of a dime on the top of my penis almost at the base and I started to get an upward curve. I did some more research on the internet and found this site (thank god). I have been reading the info on here for a while and decided to add the following to my treatment. Lucky for me my PSP wrote me the scripts. I have been doing this for the last 3 weeks.
Pentox - 400mg 2 times a day
Cialis - 2.5mg 2 times a day
Ubiquinol CoQ10 - 100mg 2 times a day

I am thinking about flying to Chicago to see Dr Levine but I am not sure this will help since I think I am doing everything I can right now. I also bought a traction device but have not used it consistently because I fear that any type of trauma may make it worse.

I have went through an emotional roller coaster with this. I think I may have gotten this from a past injury during sex, but that was years ago so I don't understand why it would take so long to catch up with me. I used to always have sex, ejaculate and continue to have sex with my partner. I was able to stay hard enough to keep going so I think maybe this caused it also. In reality I just don't know.

I still can get erections and have sex with my wife, who has been extremely supportive. I have lost about 1.5" - 2" of length and the scar tissue or plaque has grown to the size of a quarter and feels like the edges on the sides of the penis curve down. It also feels as if the scar may be starting to go farther up my shaft. My upward bend is about 45 degrees and it is hour glassed in that area.

I am considering acupuncture but the Naturalist said it has to be done locally on the effected area. Considering this would be slightly embarrassing and I fear that it may cause more trauma I have not made a final decision on whether to do this or not.

Sorry for the short novel. I just wanted to get this off my chest and see if anyone had any additional advice on what to try or do. Praying that there is a chance that this will stop and go away but from what I have read it looks as if that is a slim chance of happening. I may feel down sometimes from this but I can not give up. That is not part of my nature considering people tell me I have a strong type A personality.

For those of you who read this and respond, thank you. It has taken me quite some time to actually post something here.

[Hawk]

Artguy,

Welcome to the forum.  I am not sure what took you so long to post but I am glad you did.  If I were taking the Pentox I would not hesitate to use traction.  You will likely gain at least some of your length and girth back.  

My view in order of importance is:
You are taking a low dose of pentox and should at least up that to 3X a day.
Stay with the low inflammatory diet,
Use traction starting light for a couple hours a day and work up to more than 4 hours with increased tension.
drop the Ascorbate C since it may actually have a negative effect.
Stay with the L-Carnatine
Take no more that 400 - 800 IU of full spectrum Vitamin E with Beta and Gamma Tocopherols (probably won't help but some say it will)
Drop the enzymes unless the cost is no issue because they will do no good.  

I agree that at this point a urologist will not do a lot more for you if you are not a candidate for surgery (and you are not by your description).  

I want to stress the importance of getting 4 exact objective measurements of: erect girth (base and behind the glans) - BPSFL - degree of deformity.  You can add bone pressed erect length for a 5th measurement since you still seem to get good erections.  Without these measurements you will have no idea if you or the Peyronies is winning.

Good Luck

Hawk

[funnyfarm]

Everything Hawk said.

And a few other things
-I continue to do the accupuncture to reduce the side effects of pentox and general inflam.
-for me low inflam. diet meant low sugar, NO grains except brown rice, and diary is fine.  but you need to experiment and see how it effects pain levels.
-the natto makes my pain worse and did nothing for scarring.  Be careful of taking too many "natural" supplements, over time they have a tendency to raise inflammation.  it is better to get nutrients from whole (preferably non-gmo organic) foods.
-I am taking 5 pentox pills a day.  2 may not be enough.
-I would recommend only the best quality fish oils (like nordic naturals) the cheaper brands also made my pain worse (no idea why).  be open to experimenting with different brands.
-be patient, progress is measure in months not weeks.

[MattFoley]

Artguy,

I agree with everything Hawk and funnyfarm said as well.

I would add this:

Get a full panel blood test done that checks not just your lipids but your testosterone level as well. My emphasis since I started my counter-attack against Peyronie's has been to raise and maintain a high testosterone level. Let me know if you want a list of the things that should be checked.

[LWillisjr]

Artguy,
Are you able to estimate the degree of curvature you have developed? Is intercourse still possible? Is pain your primary deterrent currently?

Dr. Levine is my doctor. Happy to answer any questions you might have.

Les

[ashtown]

Isn't Ascorbate C just vitamin C? Why would that cause any problems for Peyronies? I heard that vitamin C was useful for boosting the effects of Vitamin E.

[Hawk]

While I don't have the information at my finger tips there is some indications that Vitamin C (in mega doses) can worsen the fibrosis in Peyronies.  Vitamin C is a collagen builder which in itself does not mean a lot but it is also fairly well known to be contraindicated in people with osteoarthritis. Both are auto-immune responses.  That information combined with the total lack of evidence it would help Peyronies Disease is enough that I would steer clear of mega dosing with C.

[ashtown]

I swear it feels like I can't get a break with this Peyronies. I've been taking 3xRDA for Vitamin C together with 3xRDA for zinc because I've heard it would help with testosterone levels.  

[Hawk]

Don't take my word.  My memory is fallible.  I formed the view years back when I was researching vitamin C and cannot call the specifics that I based that conclusion on.  George would be a good first step.  If  find specifics I will post them.  In fact I think I have before.  I will do a search.  

[Hawk]

Ok,  I took some time to do some digging for you.  Here are 3 links.  Problem is most are to my prior posts.  They hold clues but no real answers.  It is worth reading any related posts and quotes within the post.  It is all I can offer for now.  This is the point when I like to kick things around with George.  

PS: One of these contains a link stating that topical verapamil contains a warning not to use over 400 mg of vitamin C per day.

[artguy]

To all thanks for the advise. I will up my Pentox dosage and make a few more adjustments to my regime.

Hawk - I think I am going to keep the Vitamin C in there just lower the dosage. This is the first winter I did not get the flu or any colds and my wife and daughter have had a few. I think the Vitamin C helped stave those off. The enzymes I take do put a dent in my wallet but they did help take the pain away after taking them for a week or two. I will talk to my Naturalist about this and maybe lower doses.

Funnyfarm - Nordic Naturals is one of the brands I use. The food in our house is all organic, GMO free & range fed. Still staying with the no dairy or glutton also. I'll talk to my Naturalist about the acupuncture. Is yours done locally on the effected area or are your acupuncture points elsewhere?

MattFoley - Please send me the list and I will ask my PCP if I can get the tests done.

lwillsjr - about a 45 degree bend upward. Hour glass at the base. Still having sex when possible with a 3 year old around and no pain anymore.

All - I read the post about stem cell injections. This sounds very positive to me but it is quite costly and I doubt insurance would pay for that. If anyone else tried it I would like to hear more about it.

[funnyfarm]

Hello Artguy,  It sounds like you are already doing a lot of things right, good job.  I have only cleaned up my diet for a few weeks and it took me 14 months of Peyronies Disease to realize it was time to cut out GMO's and meats that were not range free.   So I think my body still needs time to get the full benefit.

Regarding the acupuncture, it is not local as I go to a community clinic (everyone in the same room).   Both doctors I asked about local needling said it is good for scar tissue, but if you also have pain/swelling like myself it is not a good idea.   I got the impression it will increase blood flow, but I have already accomplished that with pentox and do not want to risk irritation from the needles.   If you have a hard scar, with no pain, local treatment would be indicated.

Also I was told to try moxibustion locally at home to increase qi and bloodflow, but I did not feel any immediate benefit, so I got lazy and stopped..  

I do sleep better and have less anxiety with the acupuncture treatments, so that makes it easier to deal with things and most likely aids the healing process.  

[MattFoley]

artguy,

Consider having your doctor check the following:

Testosterone Free
Testosterone Total
Thyroid Panels (T3, T4, TSH)
IGF-1
CMP Profile
Lipid Profile
CBC w/Diff profile
PSA
C-Reactive Protein
DHEA-sulfate
LH
Estrogens
Vitamin D

[goodluck]

A couple of observations and experiences.

The vit C RDA for an adult male is 90mg.  This is considered pretty low by most ND's, functional medacine or holistic doctors.  3x that is still considered low by that group.  Keep in mind vit C is not synthesized by the human body.  You need to get it through diet.  If you can get your vit C from food rather than and isolated vitamine, I feel  that is certainly ideal.  I am hearing more arguments to that end.  To me, this  makes lots of common sense.    You are giving your body the nutrition in the form it has been getting it since the begining of time.  I don't know how long that is but it is a very long time relative to the time humans started to consume isolated vitamins in a pill or powder.  

Perhaps the problems identifed with taking Vit C and lysine have happened becasue people were taking a synthetic form of C and not a whole food form?  I don't know the answer.  I am only posing the question.

You can google on this topic and find lots a broad range of sources talking about this.
Below is one I am sharing becasue it is brief and to the point.  But there are many out there.

Synthetic vs. Natural Vitamins

My experience with the enzyme blend called Wobenzym has been positive.  When I have pain (any where) I take 3 tablets 2x a day on an empty stomach.  Occationally, when my pain has been more severe, I have taken 3 tablets 3x a day.  Some times I compliment that with topical analgesics or anti inflamatories.

I know Wobenzym is expensive, but eating the lining of your digestive track or damaging your liver is not an option I want to deal with.   Most of us in the industrialized world have already abused our diegestive track enough.

I have never use the Vytalzym product.  I know it is different and more used for removing fibrinogen. it is also more expensive.  

I have been studing nutrion for a long time and got more deeply involved in the past few years.  I have seen fads come and go around diet.  Looking back, many are centered around someone trying to sell products or services (i.e. dieting plans, wieght loss, fountain of youth etc.) and had very effective marketing. I have seen broad brush rules of thumb come and go out of favor.

The two general rules of thumb that I have yet to see dismissed or be taken over by something else are these:

1. Drink penty of good pure water every day.
2. Eat mostly fruits and vegtables every day.  

You will see different variations of these that give more detail.  i.e. eat organic and non-GMO fruits and Veggies.  Drink non- flourotated or non-clorinated water.  These are just removing the components man has added to or altered from nature.

This is so simple and commonsensical people dismiss it.

[Hawk]

They say opinions are like *&^%S, everybody has one.  I feel I have extensively researched supplements for over 30 years.  I am certain that of the 4,000 members here no more than 2 or 3 have taken as many supplements as I have.  I have read a lot, bought into a lot, rejected a lot, and I am left with a layman's view of what i think makes sense.  Problem is, it is all only as good as my logic, and logic cannot replace hard data.  There are few objective, well conducted studies.  Furthermore the nutrition industry in my view has no room to criticize the pharmaceutical industry.  They are at least as unethical.  They often mix supplements in proprietary formulas and refuse to tell you what you are taking and in what quantities.  They then charge you 8 or 9 times the price you could buy the same supplements for and try to tell you this is the only hope to stop your cancer.  I get pretty annoyed when supplement pushers talk about "big pharma" and FDA conspiracies.

They would have us brainwashed with conspiracy theories, that we all need colon cleanses, that we walk around with 15 lbs of waste in our colon like corrosion on the inside of an old pipe, all conclusively proven to be false.  The crap (no pun intended) goes on and on.  Even Dr. Oz who has some decent credibility has gotten caught up in it to push out one more show with ratings.  He has one nutritional gimmick after another. Several that contradict guests that were on just the week before and he seems to agree with or promote most of them.

I don't buy that any vitamin C is better or worse than ascorbic acid unless possibly C ester (not to be confused with ester C).  I think the expensive enzyme fad is a total rip off no better than a placebo.  (And I have taken them all). And I don't think any of us are having our digestive tracts eaten out by decent regular food.  And I think that we are almost to the point that there are as many harmed by too many supplements as there are by a lack of nutrients.

These issue are far too involved for the  introduction topic.  This is an easy place for new members say hello, introduce themselves and their major concerns, and ask some initial questions.  Usually the new member should move onto the main boards after the topic is 10 - 20 posts long.  The introduction board is where we can give some basic crucial advice that most agree on.  It is a place where new members and guests can easily find and read those important basics.  Lets keep it that way.  If we want to get in depth with our personal unproven theories, let's do that under some other more appropriate board.  

[MattFoley]

I agree on the enzymes. I haven't seen anything substantial online that makes me motivated enough to go out and get any.

I try to keep my program based around supplements and diet that increase testosterone and increase nitric oxide and "Peyronie's killers".

I'll wait on everything else.