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

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Kimo

WGW,,,

About vita-E.....Yes, the natural is the best but you should becareful how much you take and for how long...It's my understanding that Vita-E is a blood thinner...I took 400 to 800 iu's for about 6yrs and was really getting light headed and didn't understand why until i found this out...I stopped taking it and it went away,,,i was dizzy all the time and it's not a good feeling....I think that the E helped some, but be careful how much you take.

This is just my opinion,,,,,,,,,kimo

Old Man

WGW:

Kimo is right about the vitamin E dosage. It is a blood thinner and over extended periods of time toxic buildup can occur and lead to further medical complications.

In my case, I took huge dosages of E when first trying to get rid of my Peyronies Disease around the age of 50 or so. I had no problem then. Now that I am much older and take 81 mgs of aspirin a day for heart problems, I have to limit my daily intake of E to one 400 I.U. gel per day. In addition, I have to get liver function blood tests at least every 6 months.

So, bottom line, as Kimo says, be extremely careful to check out all the parameters of any med before embarking on taking them, etc. In other words, like the old axium, look before you leap.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

nemo

Guys, I decided to try the Acetyl L-Carnitine - just ordered a bunch.  I'm already taking L-Arginine, and of course, Vit-E.  

Can anyone tell me what the usual dosage ALC people are taking?  I'm taking 3-3.5 grams of Arginine a day.  

Thanks,
Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Tim468

Some of us mixed propionyl L-carnitine with ALC in an about 50/50 mix at about a total of 3-4 grams a day in divided doses.

In some folks, notably Italians, it seems to lead to improvement.   ???

For those of us here it does not seem to confer the same benefits. I would definitely try it though.

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

pal-31

I am taking 2 x 500mg Acytel-L-Carinitine daily. I have noticed the pain lessened while I am on this supplement. I am also taking Pentox, Vasoflow, and VitE with no notice of improvements yet.

I am slowlely loosing faith in this treatment but will stick with it for another 3-4 months to complete the 9-12 months window.

Best Wishes,
Pal

hascal

I tried Neprinol for 1 year. I also was taking Vit-e. Vit-c - ALC. I bought only the best and purest I could find. After I took all my pills and supplements I had no appetite for a couple of hours. I saw no noticeable results. So I found a URO who treats with topical Verapamil & ionto and am into my third treatment so far. I swear the placque seems to be getting smaller but I have had no opportunity for an erection  >:( to check it out. I have added two more appts giving me a total of 7 so I will advise every couple of treatments. Don't know what I would do without all of the input I get from you guys.  :) Holla back later - HASCAL

hector

When I joined this forum a few months back, most folks here recommended I try to the PAV cocktail with traction or VED.  Now, 8 months, two urologists and $700 since I was initially diagnosed with Peyronies Disease, I can't get a doctor to prescribe the P and the V. (I've already started taking the arginine and am back on Vitamin E.)  

Both of the urologists I saw said they'd never heard of the PAV cocktail.  The second one, billed as the region's expert on Peyronies Disease, said he and his colleagues had never heard of Pentox.  He claimed they had done all kinds of research looking for it.  A 10 second Google search later, I left him a voicemail politely explaining that Pentox was short for Pentoxifylline, the generic form of Trental.  He never called me back.  A week later his secretary advised me to try faxing information.  I sent a dozen pages.  He never called me back.  I left an angry voicemail another week later and, surprise, he never called me back. (Gotta love this healthcare system and some of the dedicated, caring professionals who profit from it.  And I'm only 28... I can just imagine how much I have to look forward to!)

What makes this all the more frustrating is that I think my condition may be worsening.  I have noticed what may be a new nodule and am having a harder time achieving distal erection (that's the term for your head getting hard, right?)

So, my question is, does anyone know of a urologist in Ohio, western Pennsylvania, West Virginia, Kentucky, or eastern Indiana who is aware of the PAV cocktail and likely to prescribe it?  Any help would be greatly appreciated.



bodoo2u

OK, I don't really have a sensitivity to Vitamin E, I just can't tolerate the soybean oil in it, which all of the full-spectrum brands seem to have. In light of that fact, is it allright for me to take another form of E for treatement of Peyronies Disease. Also, If I've had the disease for two years has my plaque already calcified. What are the best treatment options for me at this point. Presently, I use traction a lot more than I use the VED. I know I've been on the board a long time to be asking these questions, but here I am.  

Old Man

boodoo2u:

Concerning which vitamin E to take, there are several varieties on the scene. Since you can not tolerate the soy bean variety, try other regular brands. I had stomach problems with the high potency varieties. I take the regular E OTC from Sam's Wholesale Club with no problem. The gamma versions are the best, but if you cannot tolerate them, try the others, etc.

Now, about the VED versus Traction therapy you mentioned - based on my experience along with others on this forum, I strongly urge you to use the VED therapy each and every day. Consistency in VED therapy is the key to success with it. Traction has its place in Peyronies Disease therapy, but you should endeavor to use the VED on a regular daily basis along with the traction.

Constant stretching the penis with a VED on a daily basis affords a better atmosphere for helping with Peyronies Disease symptoms. So, again, I urge you to try the daily routine for a while (several weeks at least) before reverting back to the traction and spasmodic use of the VED.

Regards, Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

George999

Hi all,

After moving sideways for a while with some subtle improvement which I personally attribute more to diet than anything else, I am planning to take my next big plunge.  I am really stoked right now regarding that whole AGE scene.  The diet I am on should be severely limiting AGE formation and so now I am looking at starting to take multiple supplements that are known AGE-breakers in an attempt to break up existing plaque.  I find the whole AGE-breaking approach fascinating.  They tried AGE-breakers in the test tube and they worked spectacularly.  They tried them on animals with equally spectacular success.  Then the human studies were a huge disappointment with a conclusion that they wouldn't work in "longer living" species.  That is a conclusion that I find hard to swallow since it would be just too convenient a way to terminate what had previously been a promising study.  There is really no evidence that they ever considered any other possible cause of the observed outcomes.  Like, for example, whether the AGE-breakers might actually be working, but that the plaque creation process might be outrunning it.  In any event, I want to try these substances in the presence of a rigorous diet targeted toward stabilizing insulin levels.  One other thing that really troubles me about the AGE-breaker failure is that there was, in fact, at least one study that indicated that Acetyl-L-Carnitine, an AGE-breaker, actually worked.  I also find it fascinating that the one product that has shown a glimmer of promise lately, Pentoxifylene, is also an AGE-breaker.  There is something out there in this realm that deserves a second look and now that I have all of my other significant health issues resolved, I plan to look into this thing.  - George

Hawk

George,

You use the term "AGE-Breaker" and "AGE formation" like it is a term discussed a length here before or perhaps a common term that most people are familiar with.  I am not familiar with the term and questioned if you were using it as the word age (meaning old) or if the letters "A" "G" "E" form an acronym since you use them in upper case.

I appreciate any clarification.

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

George999

Hawk, Its an acronym for Advanced Glycation Endproduct.  http://en.wikipedia.org/wiki/Advanced_glycation_endproduct  It is a process that is generally associated with Diabetes, but it is also at the heart of both fibrosis and aging.  Another interesting commentary is:  http://longevitymeme.org/news/view_news_item.cfm?news_id=3315.  What is becoming more apparent is that any amount of elevated blood sugar, elevated insulin, and elevated animal protein levels accelerate the AGEing process.  This whole thing seems to be really key in the case of Peyronies and we really need to get up to speed on it.  - George

Here is another very good article explaining AGE: http://www.nyas.org/annals/annalsExtra.asp?annalID=28

california

Does anyone here still take colchicine?  How long have you (or had you) taken it and can you attribute ANY improvement to it?  I have been taking it as well as pentox and although the science behind pentox makes more sense to me, I dare say either has done much.


Hawk

California,

I took it for 60 days way back in the beginning but it was suspected that by white blood cells took a significant drop so they took me off of it.  In retrospect my family doctor says my white count is usually borderline low and he thinks it was in a high spike when Dr. Mulhall took the initial blood count.

In any regard, i cannot say that I could tell colchicine did anything but I had ED issues from prostate surgery and it may have stopped the progression of Peyronies Disease for a time but it is hard to say.  Colchicine can have some nasty side effects so stay on top of blood count etc.  It can also cause hair loss.  It is almost like chemo.

I think 60 days or even 120 days is way to soon to evaluate pentox.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

antony

Hello,

Concerning pentox, as anyone had any good returns or personal improvement from that?  

I've taken it for 2 months (with vit E) -so by the way i listen Tim's advice- , and my doctor knew that concerning fibrosis in general, she told me she had already healed some cases of real fibrosis , but she had no clue about penile fibrosis, she only knew for fibrosis in the shoulder or back. I have for the moment no positive effect at all.

Concerning viagra daily , i'm scared too by side effects at long term (the generalist doctors told me to really avoid it). But i replace it by cialis , that we can take less often coz the effect stays more longer. Do you know if both cialis and viagra have the  same suposed effects to help VS penile fibrosis, combined with pentox and vit E ? Or if its ONLY viagra which is suposed to help?

Also do you know if it's possible that the WHOLE "structure' of penis has changed? i mean i have big loss of size, girdth, etc, but even the form at flaccid and elasticity have changed so much, i mean is it possible not to have a 'plaque' or even 'several plaques', but a total change of the tunica and corpus, that would have gone from a 'spongie tissue' to a hard tissue (but not only at one or 2 areas but everywhere -don't know if it's clear?)

thanks

youngPD

Hi Antony and everybody ,

About using Cialis or Viagra on a regular basis(cialis every 2 days or so) ,I have heard this recommendations some times and considered it. it has some similarity to the Pentox (pentox is PDE4 inhibitor and Viagra/cialis/lavitra are PDE5 inhibitors). however ,those PDE5 inhibitors caused me weird side effects like flush on the face ,headaches ,weakness of muscles or fatigue of muscles and red eyes.so I used them only occasionly ,rather than daily. Another thing that really prevented me from using it on a daily basis was the phenomena called "NION", which has been reported by patient who used it too often (it is a stroke of the eyes -- causing blindness).whereas I am aware of the rarity of those occasions ,it is still bothering when you consider using it daily.

About the whole structure of the penis - I have exactly the same phenomena of Defused plaque which is anywhere ,rather than hardened specific areas.

Following George's advices I try to lower the sugar in my diet. it supposes to help preventing maybe farher progress of the plaque.

As far as I heard ,there may be two kind of plaques/fibrosis in the penis. a focal (a plaque in a specific area but not in most of the penile tissue) and a diffused one (meaning it may be found in wide areas of the penile tissue). I can logically assume that the impotence in the latter cases should be more severe (as in my case) ,since a wider area of the penile sponge tissues become inelastic and thus unable to push back and shut the vains which drain he blood out of the organ.

All the best,
Ron

George999

It is pretty much proven that Pentox attacks fibrosis in general.  My observation is that if ones body is creating plaque faster than Pentox can resolve it, Pentox won't help an awful lot.  There is a whole lot of positive research out there concerning plaque busting.  I am convinced that the problem comes when the process of plaque creation is outrunning the efforts to dissolve it.  ALL plaque has one thing in common.  It is created when glucose attaches itself to protein and forms abnormal tissue.  In the case of Peyronies the protein involved is collagen and the process is referred to as Glucose-Mediated Crosslinking of Collagen.  It is basically modulated by the amount of glucose available in the tissues, which in turn is modulated by a person's total caloric intake.  *This means more than just sugar - REMEMBER - the liver manufactures glucose out of fat and even protein if necessary and if your diet is high in ANY kind of calories, your body will turn that into glucose which will fuel the problem.*  The process itself generates inflammation which is why people with higher caloric diets have a greater level of systemic inflammation than those on restricted calorie diets.  Unless one knows how food "works" and applies that knowledge, one cannot lower caloric intake because hunger will drive them to consume excessive calories.  The bottom line is that foods that rank high on the glycemic index are calorie dense and will cause your glucose to increase.  Additionally all sweets, even zero calorie sweets, stimulate hunger whereas certain other foods satiate hunger.  So what you have in your refrigerator will predetermine whether you end up with an unhealthy calorie dense diet that fuels fibrosis (among other things) or a nutrient dense diet that stifles it.  Trust me, there is plenty of science out there to back this up.  The problem is that people want an easy solution that comes in the form of a pill and doesn't require a lifestyle change.  So the answer becomes, you can wait for the magic pill, which isn't here yet and may not be here for a long time, or you can take advantage of current scientific knowledge and stand a good chance of making headway against this extremely difficult to treat disease.  The choice is yours.  - George

George999

Note to Ron and everyone else.  Just to clarify, it is not only sugar that is the problem, it is ALL foods that rank high on the glycemic index.  Sugar and even artificial sweeteners are especially an issue because they drive hunger.  But ALL high glycemic foods are calorie dense, tend to dump glucose into the body at a high rate, and problematic.  Low glycemic food are OK even though they may contain sugars, because they release those sugars into the body slowly and in a way that doesn't stimulate hunger.  Excessive intake of fats is also a concern and trans-fats should NEVER be consumed while saturated fats should be consumed in careful moderation.  Unsaturated fats have numerous health benefits and can satiate hunger and cause one to eat less, thus lowering total caloric intake.  - George

Tim468

Several random notes:

NO data yet but reasonable to assume that any PDE5 inhibitor will work. Using common sense, it seems a dose that "works" for you for Viagra and for Cialis would be reasonable to transpose to this realm. Therefore, if 50 mg of Viagra works for ED, and 10 mg of Cialis works for ED, then the rule for you would be: 25 mg Viagra daily would be equivalent to 5 mg of Cialis daily or every other day. The ratios , though, may not really hold up. Rather, since we are trying to make changes over time, I would start low and titrate to side effects. I am becoming aware that Cialis (which does not cause head aches for me like Viagra) may be causing me back aches. I may try the third one - see how it works.

I bought a bunch of Cialis and it was expensive - I have been using HGW instead, and I add Cialis if things seem more active.

For George, I think that glycosolation is really important, and perhaps centrally important, but I do not think it underlies every case of Peyronies Disease. I thin there will turn out to be those who make to much TGF-B1, those who have an immune modulated cause, those who have abnormalities in glucose metabolism, and those with other inflammatory conditions.

The important things is this: what can we DO??

Dietary changes are hard, but they are something that are under our control - we can be in charge of them. And they have the added benefit that if we fail to make Peyronie's better we will make virtually everything else about our lives better while we are trying.

So George, tell me this - would you be willing to write down a typical two or three days diet for you for us to read? I am interested in what you actually eat - where you buy it, what attention do you pay to organic vs non-organic, etc. IOW - details! I know this is asking a lot of you, ut I am determined to make diet the next major change I make. I have taken this tack - I am making very small gradual changes on a weekly basis. This week, I started eating better lunches and I have been eating better breakfasts too. My exercise still suffers due to lifestyle issues (ie I work too damn much). I am sleeping better too, which has an enormous effect on my metabolism and well-being. Sleep deprivation increases one's secretion of ghrelin, which stimulates appetite (it also leads to less leptin production, as well as desensitation to leptin, leading to problems in eating too much.

So my sleep is better, and my diet is starting to improve. I would really like some ideas for what to eat to make it even better.

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

j

Since I also have Dupuytren's (and Lederhose, frozen shoulder, Garrod's knuckles, the whole constellation) I've been interested in the insulin theory since it first appeared.  Unfortunately as yet there hasn't been any clinical interest in this idea; but there's certainly a lot of research into diabetes that might apply, someday.  

I'm thin and in pretty good shape; but I have to admit, I've always been the King of Carbohydrates. I don't eat sugary treats but do consume a lot of bread, baked goods, trail mix and so on.  As you all know it's really hard to avoid sugars unless you stay completely away from processed/packaged foods.  


antony

Hello,

To Tim: what do you call the HGW ?  
Do you mean that cialis is causing your back aches (not sure about the sense of your sentence)?
As for me, the doc wants me to take 5mg every 2 nights, coz there are new boxes of 5 mg available now. But i'm quite scared about regulare use on long term. Moreover, even higher dose helps me so few for erection that i dont know if it will really help.
What do you call the 'thrid one'?

To Georges: but what do you think about fibrosis due to bad scar after a trauma? do you think its linked to glucose or food too?

To Ron : yes i think (im sure) we have difuse fibrosis everywhere in the penis, not only isolated plaques. In fact the spongy tissue is no more a spongie tissue, its a hard tissue. And at the moment pentox does not help.

I'd like to know, has someone have an idea, if its better to try to have sex with cialis to make the blood circulate, or not to have sex for avoiding creating new scars?

youngPD

Antony :

Regarding your question about blood circulation .I think you should be like a "rope-walker" here . your penis needs to get some blood circulation, however in some stages ,rushing too much blood there may cause further damage like micro injuries or so.so I do not think it would be good to stimulate some blood into the organ,but one should be very cautious with it.

Tim468

Antony:

HGW is horny goat weed.

The "third one" is Levitra. Google the terms cialis and viagra and the title "Cialis, Viagra and Levitra to Treat Erectile Dysfunction" is the first hit.

Multiple prior posts about back aches for cialis:
https://www.peyroniesforum.net/index.php/topic,23.msg12002.html#msg12002


Multiple prior posts about why we take Viagra - it is not for erections:
https://www.peyroniesforum.net/index.php/topic,22.msg6934.html#msg6934
https://www.peyroniesforum.net/index.php/topic,48.msg11921.html#msg11921
https://www.peyroniesforum.net/index.php/topic,84.msg11442.html#msg11442

I don't know what to say to your concern about taking Cialis longterm. It has seemed to me that you are more afraid about never getting back your penis function.

You said "Moreover, even higher dose (of viagra) helps me so few for erection that i dont know if it will really help."
Many times we have stated that this is for anti-inflammatory effect and not for erections. In your second ever post to the forum you said,m in response to me:

"I tried to take cialis during last month two times a week. In my case, the problem is that the penis has changed of anatomy. I would say the cialis 'works', but the induced erection is now small, with curvature (not a big one, that's not the problem), paintful, with no sensation, and totally hard, with no elasticity in the penis. In fact my penis becomes very very hard and 'sticks itself' to the belly and navel (if you see the image), it doesnt go in 'normal direction' like before, i mean pointing right. There is definitely a big organic problem. It's for that reason i would like treating the fibrous tissue if it's possible, and not only take medicine like cialis or viagra, coz they are not very useful in my case."

I believed that you needed help and so I took the time to post back:

"The Viagra or Cialis is not intended to promote erection for fibrosis, but to promote healing. Getting harder erections is simply a good side effect! Rather, the viagra, and arginine promote what are called "nitric oxide" (also known as 'NO') biochemical pathways in the body. This will promote an anit-inflammatory healing, and allow recovery better than when such drugs are not given."

Since then I have said the same thing again and again.

Do you sense some frustration here in me?

All the above helpful information was easily accessible to you with doing the small amount of work I just did - for you.

I wrote the above post to you in August of this year. I have repeated it at least twice more in posts directed to you personally.

I took the time then to even add for your benefit the literature that you needed to read to learn more about this:
Valente EG et al. (2003) L-arginine and phosphodiesterase (PDE) inhibitors counteract fibrosis in the Peyronie's fibrotic plaque and related fibroblast cultures. Nitric Oxide 9: 229–244

Schwartz EJ et al. (2004) Sildenafil preserves intracorporeal smooth muscle after radical retropubic prostatectomy. J Urol 171: 771–774

Rajfer J. Gore JL. Kaufman J. Gonzalez-Cadavid N. Case report: Avoidance of palpable corporal fibrosis due to priapism with upregulators of nitric oxide. [Case Reports. Journal Article] Journal of Sexual Medicine. 3(1):173-6, 2006 Jan.

Aslan A. Karaguzel G. Melikoglu M. Severe ischemia of the glans penis following circumcision: a successful treatment via pentoxifylline. [Case Reports. Journal Article. Research Support, Non-U.S. Gov't] International Journal of Urology. 12(7):705-7, 2005 Jul.

Evliyaolu Y. Kayrin L. Kaya B. Effect of pentoxifylline on veno-occlusive priapism-induced corporeal tissue lipid peroxidation in a rat model. [Journal Article] Urological Research. 25(2):143-7, 1997


So I am frustrated because it DOES seem that you are going in circles, but not really hearing what I say. Moreover, it feels like you are essentially asking others to do your work for you. Curiosity is good, but dialog is more helpful.

This is where my frustration comes from or a sense that you need to DO something. Yes you are doing some things, but when I am asked the same questions again and again, I am not going to do all the work for you any more.

This stuff is not easy. If you do not know what an abbreviation means, do a search for the term. If you think you heard something before here, do a word search in the box in the upper right corner of the page you are looking at right now.

Read the archives. Search out confusing terms - but I am tired of repeating myself, and this is not just about the topic of attitudes and hope. I find myself repeating myself on a lot of topics.

And, perhaps, you should read this post carefully, perhaps print it out. Perhaps consider why it is that information given to you does not seem to "stick" well. That is your work. I have my own work to do now.

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

Hawk

Antony,

I can only hope you appreciate the huge amount of work that Tim just did to help you.  He gets noting in return.  THAT is the meaning of compassion.

I also want to to say that I notice that you seem to want reassurance that a treatment will cure or very greatly improve you before you commit to trying it.  While that is understandable, you must understand that you will not get that for your condition.  We know what items MAY work.  We can tell you what treatments seem to have reasonable theory behind them.  We can not give more assurance than that.  We are careful to recommend those things which are VERY UNLIKELY to do harm but that have some likelihood of helping to some degree.  Some of theses treatments have reduced beds by way more than half in some people.  Some of these treatments have helped some men to regain almost all of their size.

You cannot know the end result before you begin.  If I were you, I would have started PAV and VED / traction 2 months ago.

for a definition of PAV go to http://www.peyroniessociety.org/glossary.htm

PS: I am concerned that you said the quality of your ejaculate or the actual look of the fluid has changed.  I do NOT think this can be associated with Peyronies Disease since semen is produced in the prostate and sperm is produced in the testicles neither of which are affected by Peyronies Disease.


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

antony

Hawk:

But i do appreciate!! Sincerly! but I just don't understand why there is such a agressive tone. I had started to explain that just before you posted your post, so i post it, even if you will say that i complain or whatever, its not the case, i just tell what i think.
I of course not ask for to be sure that a treatment will work, when even the doctors dont help and dont know, but i ask for if people had already tried them long time, did they get a benefit?
I dont know if its because its in english and by writting, but dont 'interpret' (not sure of the word) wrongly what i say, i am really pleased for help, but of course i'm very chocked, down, weak by what happened and can't hide it, yes.
Thanks for definition of PAV.
I just maintain the response i had started to type for Tim, coz i REALLY apreciate what all you do, but i dont know why being 'frustrated' and each time speak 'cynically or agressively' , and judge what i do or think or feel.
I also know you care of us and of everybody, i have never told the contrary, on psycholigical part we were just explaning that acording to people situation and gravity of the problem, we dont live the things in the same way, and it does not have same consequences on life.
Cheers

Tim:
Thanks youfor answers, but i dont know why you use 'agressive' tone.
You say i don't listen to what you say, it's wrong, i do it (or what is the use to ask for help?)
Yes you are right that my first fear is to never recover penis function, and that is normal, so yes i asked questions in this sense. But It's also normal that i ask myself question about long term uses of cialis, if one day i recover penis function ( and i bet no), but if it's to have after heart problem or being blind at 35, it's no use too. So, i just check , if people experimented it.
You speak agressive when you just answer to some totally despaired and lost young people. Despaired does not mean i do not listen to you, or does nothing, or me to wait for others do things for me. I ask you some advice, because i bet you know it, so what is the problem to answer nicely, even if you have repeated it 2times?
As for me, all what i know, what i did, exams i passed, symptoms, or even help about pudendal nerve or other problems i am well informed on them, i would share with no problem to everybody who would need them, even if i repeat one or 2 times the same thing.

I totally remember when you told me that cialis or viagra , in this case, were not to have erection, but to fight VS fibrosis condition, yes. But waiting for that i was also asking myself how i could try to have intercourse with gf, if the doses of viagra or cialis were working less and less.

Moreover, if i've repeated some questions, it's because, sadly, there is a bad EVOLUTION in this problem. What i wrote in august is no more available, coz things go worse and worse, DESPITE the fact i followed some of your advice, i'm under several treatments, i'm treated psychologically too, but at the moment nothing helped, and worse than that, things go worse and worse. So i re ask me some questions again, seeing the evolution.

Also , you had told me that combination of pentox, viagra/cialis , and l-arginine would help to heal fibrosis -it has worked on animals you told me-, so i was just asking if anybody had healed with this combination? It's long time , expensive and side effects treatments, so of course i try to take information about people who did it, in the same way i would answer to people who ask it to me, if it made good or bad effects on me, to share my experience...
With 'heavy' treatments, we sometimes need to be sure, and sometimes ask several times the things, moreover when it's not in your original language and when you have your head 'empty', because of a so big change in your life so sudden, it's still recent.

And i take lots of time to do my own searches too, ok, i've spent hours of discussions with doctors, on the net, on the french sites , etc, sorry if  it's not so complete and precise here than in the USA ... We only discover now that pentox can work on fibrosis in france...
Then, to re-read hundreds of sites or explanations in english is a big effort for me, maybe you think it's easy coz i can write english about clearly, but it asks me great efforts and veyr high concentration (which i lose sleeping so few and being depressed) each time. So yes, i thank you to give precise answers to some questions, even if you did the work before, the goal is to share it isn't it?

I have read some of the links you had given me, and i had thanked you for that. One again, big litterature in english, moreover medical one with specific terms, is not so easy for me to understand. I do my best anyway.

Maybe you seem to be frustrated, but you would be very frustrated too if, like me, you would have lost all your money in really bad doctors who took your problem like 'dont mind, its nothing' (coz they know they can do nothing). I'm not isolated case, other french guys had the same crap 'road'. Here doctors are like this, and the truth is that they are not competent in this type of problems, exept 'take viagra, take viagra, take viagra'. (they mention it for erection, not for a 'anti fibrosis action).  And then , you discover that there is really few chances for you, and the only positive things you can learn come from forum not in your own language. It's frustrating too.

What i don't like is that you just seem to think wrong things about me (or us like Ron ie) , and have bad jugdements (like 'i be you dont have any emphaty for others' (!!!) ) with no reason, i sincerly thank you for information you give to me, but it's ok if you don't want to do, ok , i dont know , you speak about 'frustration', so what could i say in my situation?

Concerning the things i've done, ok:

i saw doctors, sexologists, urologists, surgeon, acupuncturist, physiotherapist, tried medical herbs, cialis regularly, viagra sometimes, pentox, vit E, made MRI, doppler, injection, tried to continue intimate relations with gf despite this horible situation, saw psychologist, psychiatrist to help,did relaxation, spent hours on sites to get information, shared 'medical trip' with other guys in same condition, do my best to take information on forums , even not in my own language; i mentioned several times that one doctor said one thing (take cialis regularly, use VED), the other one said the oposite (it will damage more the tissues) -and both are 'famous ones', i was said (like lots of us) that my symptoms were 'in my head' (i know that at least 7 persons were told the same) when there is impotence , huge shrinkage, twisting, torsion, no more elasticity, sometimes total hardness of tunica, sometimes totaly soft as if penis skin was 'empty', change of sperm structure (probably no more fertile sperm, cool), no sensation at all, small curvature, perineal problem. I gave up my projects coz i can't do them anymore, it broke my intimate life, i have passed from totally independant to ask for social help, etc etc etc, so i have real reasons to be frustrated too,yes.

Sorry to have bothered you, thanks for your answers anyway, but it's ok i will not ask you anymore. I am, myself, answering questions on another forum, and each time there are new cases, and when a guy just starts his 'infernal trip', is scared of what happens, and asks me questions, even several times the same, i quietly answer, coz i know what he feels, and understand his fears when you enter in such a hell.

Regards

Antony

Hawk

Antony,

I read 3 sentences of your post and then saw how long it was, jumped to the bottom and read 2 sentences and stopped.  Most members will not even read posts that long.  I often do and at times I write long posts but you need to break your posts into short comments or questions on one single topic if you expect responses.

I wish you COULD understand Tim's frustration (not aggression because he showed NO aggression) because he explained the reason for his frustration very well in his post.  I am afraid if you cannot understand it you will just have to accept it since it was explained as clearly as it can be explained.

I also recommend that you not keep telling us how very bad your penis is over and over in every post.  You made it very clear in almost every post and we understood it the first time.  You would also get less frustration if you did not try to tell us how we would react if we had it as bad as you have it.  You clearly have no idea how we would react.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

antony

Hawk,

i take note of that,it's ok. i fell it like agressive tone and there is no way to speak roughly i think. and i just told speaking about frustration, i can feel what frustration is. He tells frustration because we do not listen to him, when we do. Frustration because i speak and do nothing, but i did all what i can!
I understand what he explains, but  understand me that i can't understand someone telling 'you don't listen what i say', when i do it.
I'm now looking on PAV, thanks.

Tim468

I was aggressive - I am frustrated.

When I go to the effort to make a point, I do not usually want to make it again. It is one thing to post something I have written before to a newcomer. It is another to post the same thing to the very same person again and again.

Antony, I do not want to beat up on you. I want to get your attention and respect. I believe it is disrespectful to ask someone for something that they have already given to you and which is sitting in your own pocket, so to speak. It seems lazy.

It is not only seeming lazy or like you are not paying attention - it makes me feel like I am being treated like a library book getting checked out whenever you need to look something up. So I do not agree with you when you say: "I ask you some advice, because i bet you know it, so what is the problem to answer nicely, even if you have repeated it 2times? " See above.

Mostly, when I sense despair (and you show lots of despair) I am used to seeing the "paralysis of analysis". You can talk yourself to death and never do anything. It is time to make a choice of what is the best choice for you and to then do it. Leave no stone unturned to find a doctor willing to prescribe PAV, and get a VED and go to work.

I know that you do not get some of what we write because of the language barrier. You may have missed the post on the effect of "stretch" on the production of TGF Beta-1 (production goes down - giving a potential mechanism for the VED to help heal). So, OK, maybe that is out of your comfort zone for English of science.

But at some point you have to make some choices and live with uncertainty. You cannot be sure that you are going to keep your vision, I guess, if you took Viagra. Or you can say "that almost never happens, and no one ever posted about it, so maybe I should drop THAT fear and move ahead." Instead, months later, you are asking me the same questions again. So at some point my sense of "poor kid -  he has it bad" starts to change to "poor kid - he is unable to move ahead for fear".

I suggest that you start to treat this like a problem to be tackled. Make a notebook and start to organize your thoughts and what people have said. Print out some of the better review articles to go back to when you are not sure about something. Get some perspective and make choices and MOVE.

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

George999

Tim, Here is just a rough outline of my diet:

Breakfast:  Always fruit.  I keep a gallon container in the fridge stocked with chopped fruit.  In it goes whatever fresh fruit might be in season, apples, pears, strawberries, you name it.  It gets chopped and thrown in.  Add to that some frozen fruit, mainly it add berries (black berries, raspberries, blueberries, etc.).  Then I fill it all off with some canned fruit cocktail, the kind packaged in pear juice with no sugar added.  And always grapefruit, some people might not be able to have this, but its healthy if you can.  The more color the better!  To this I add some fiber, typically either apple fiber or grapefruit fiber, and cinnamon always cinnamon.  And I shake it all up and thoroughly mix it.  Every morning when I serve myself about one cupful of this mix, I add some walnuts or pecans, some whey protein, some truly low glycemic cereal.  This adds crunch!  The best cereal I have found is made by Food For Life (http://www.foodforlife.com).  This company makes really great products.  It is one of a handful of companies that you can run down the label and not find one junk food type ingredient in virtually any of their products.  This morning I also began adding chia seed (http://www.chiaforhealth.com).  I typically eat this with a couple of slices of flourless toast (Food For Life again).

Lunch:  Veggies, always veggies.  I keep yet another gallon container in the fridge stocked with chopped veggies.  In it goes whatever fresh veggies might be in season.  I try to include a lot of cruciferous types, broccoli, cauliflower, etc.  Lately I have been making sure that I also include raw cruciferous veggies as well since these have properties that cooked stuff loses.  Also stuff like avocados are great to include.  Sometimes I even chop up things like chard, cole, or spinich and put that in.  Once again, the more color and variety the better.  To this I add frozen mixed vegetables to fill up the container, either with or without lima beans.  To this I add flax meal and corn fiber (http://www.ztrim.com), along with canola oil, olive oil and a bit of balsamic vinegar.  Then shake, shake, shake until thoroughly mixed.  I work during the day, so in the morning I just put a cupful in my little seal able container (I like Lock & Lock containers and use them for the fridge bins as well).  To the mixed veggies I at this point add a handful of cashews, some whey protein, some of the same cereal I use for the fruit, and now I am also trying the chia seed with this.  I also like to add a little fresh salsa to this since it is extremely healthy, but lately have been to lazy to make the salsa (basically just some chopped tomato, chopped jalepenio's or serrano's, chopped onion, chopped cilantro, and a bit of lime juice).  Then I just close it up, shake it, throw it in my bag, and I'm off to catch the bus.

Supper:  Supper is more varied.  I will eat something like a meat sandwich, typically turkey, chicken, or tuna (And yup, Food for Life makes healthy hamburger buns!  They also make healthy hot dog buns, but stay away from those because what you put in them might not be good for you).  In terms of condiments, watch out for sugar and corn syrup.  Or I will have soup, green salad with olive oil/balsamic vinegar topped with cereal crumbs, or some other dish that avoids refined and high glycemic carbs like the plague.

And in between meals I ALWAYS carry around one of those sealed Lock & Lock containers filled with RAW nuts.  Peanuts, Walnuts, Almonds, these are all healthy if you are not allergic to them.  Nuts are a great healthy snack.  They fill you up without adding a lot of calories.  Occasionally I will eat a slice or two of swiss or cheddar cheese.  Now and then other things, but the above are my staple diet.  But I try not to eat ANYTHING after 8pm and to get to bed in time to get at least seven hours sleep.  Recent studies indicate that as you cut sleep time below seven hours, you increasingly put yourself at risk for cardiovascular disease, and as you increase it over eight hours, you put yourself at increasing risk for cancer.  So seven to eight hours seems ideal.  Too bad that the world we live in and the requirements it puts on us are far from ideal, but we just have to do the best we can.  Recent research seems to show that those who try to implement these diet and exercise steps in their lives, even though they can't really get it right due to the constraints of life still have far better health outcomes than those who simply refuse to even try.  For example they are finding out that actually ten minutes plus ten minutes later on plus another ten minutes later is pretty much equal in benefit to a continuous 30 minute exercise routine.  Same with food.  Sure there are those times when we just can't refuse that choice piece of junk food being offered by someone of special significance.  So enjoy it!  Just don't pig out on it and don't keep 'em in your fridge and KNOW that when you do eat it it has a cost, so eat that stuff in careful moderation.  It doesn't have to be religious, just common sense stuff.  Anyway, this is what works for me.  - George

Tim468

Thank yo so much for that! I am printing it out and going to start to make some of your recommended changes tomorrow morning.

Was that organic chocolate bar I just ate gonna have to go away? ;)

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

George999

Quote from: j on December 12, 2007, 09:02:45 PMI'm thin and in pretty good shape; but I have to admit, I've always been the King of Carbohydrates. I don't eat sugary treats but do consume a lot of bread, baked goods, trail mix and so on.  As you all know it's really hard to avoid sugars unless you stay completely away from processed/packaged foods.

j, a couple of comments.  First of all, the problem is not carbs, but rather the type of carbs.  Our bodies NEED carbs and the nutrients that high quality carb foods contain.  But most bread and baked goods are loaded with the wrong kinds of carbs and often the wrong kinds of fats.  Trail mix is ho hum.  It usually contains nuts (good), and dried fruit (good), but the dried fruit is often soaked in corn syrup (bad) and sometimes candy is included (bad).  Secondly, the more you avoid processed/packaged foods, the better.  They are indeed the root of the problem because they are usually loaded with mass market universally unhealthy ingredients and tend to be calorie dense rather than nutrient dense.  That is why nutritional experts STRONGLY advise shopping the "outside aisles".  The sad fact is that most of the healthy ingredients in processed foods have been stripped out and thats what ends up getting sold as 'vitamins' and 'supplements'.  Lastly, being thin does not necessarily indicate a good diet.  It just means that you have 'good' genes in this regard.  Unhealthy diets result in all kinds of maladies.  Which one(s) you end up with are determined by your genetic vulnerabilities.  Just because someone is consuming to much high glycemic carbs does not mean they will necessarily end up fat, or diabetic.  But they may end up with Peyronies, hypertension, arteriosclerosis, or any of a number of other mysterious and unfortunate diseases that spring forth from that lifestyle.  Its not about being fat, its about a process, a process that begins with eating too much high glycemic, calorie dense food and ends with something giving up somewhere from all of that excessive glucose and insulin being shuttled around your body.  And since glucose and insulin are very dynamic, it doesn't even require that you be diabetic.  Fasting glucose measurements do not give a clue as to where your glucose and insulin levels are going when you have just eaten that piece of cake or pie or even that sandwich made with mass market bread loaded with refined flour and flavor enhancers like corn syrup.  And those spiking glucose and insulin levels are tearing up your body and its the weakest genetic link that fails first.  - George

George999

Quote from: antony on December 12, 2007, 10:33:15 PMTo Georges: but what do you think about fibrosis due to bad scar after a trauma? do you think its linked to glucose or food too?

Antony, A scar IS a type of fibrosis.  You ask if I think trauma induced scaring/fibrosis is due to food?  Yes, I think it is linked to one's diet.  Of course it is also linked to ones genetic make up.  Some people just have good genes in this regard.  They have lousy diets and they will NEVER have problems with fibrosis no matter what kinds of injury they sustain.  But when bad diet and bad genes cross, watch out!  And guess what?  You CAN'T change your genes, but you sure can change your diet.

By the way, I think that everyone here CARES about you and is trying to help you.  You are getting a huge amount of great advice.  But only you can act on that advice and reap the benefits.  But you have to stop focusing on YOURSELF and on YOUR problems and start being thankful for what you have and for so many people right here who care about you and are trying their best to help you.  - George

George999

Research has shown that rats on calorie restricted diets have very few health problems and tend to live far longer than rats on conventional diets.  What does this tell you?  Almost all the health problems that rats ordinarily have are do to excessive calorie intake.  And all the evidence indicates that in the case of humans, its no different.  The answer of the experts, of course, is that the healthy rat diet is simply impractical for humans.  I'm not sure about that.  I rather believe that if one gets rid of the known bad stuff, the rest will tend to take care of itself and we will find ourselves consuming far fewer calories, and the less, the better.  But too many popular diet plans try to cut calories without boosting nutrients.  That is a prescription for disaster and the reason that many dieters suffer from maladies associated with malnutrition.  The point is NOT to starve ourselves and if you are hungry all the time, that is a danger sign.  The point is to get rid of the empty calories which ONLY serve to put us at risk of disease.  Nutrient dense calories, on the other hand, are essential for good health.  - George

Hawk

George,

I am not sure I have the time to engage in this conversation but first, I wonder if this should not all be moved to "A New Theory" topic.

I have been on a somewhat self-made diet on low glycemic index food, very minimal transfats, high omega 3 fats and minimal saturated fats.  I offer an opinion or two on your diet and a suggestion or two on other items.

First, as you no doubt know, MANY fruits have a high glycemic index, bananas, and raisins are just two.  Syrp like that in many canned fruits and fruit cocktail is as bad as anything we can consume from the point of glycemic index.  When we do include a higher glycemic index food, it can be buffered (its effects diluted) by consuming some protein  & good fat just prior or with the higher glycemic index food.

My diet offered with no professional insight is like follows.

Breakfast: Old Fashioned Quaker Oats with 2 tablespoons of ground flax seed, and 10 grams of whey protein added.  I throw in about a 1/2 cup of blue berries and half of a banana and use good tasting vanilla soy milk.  The soy milk is my preference.  It is actually worse on the glycemic index scale but lower in fat and better for prostate cancer issues.  The flax seed and the whey help buffer the sugar present in the banana and soymilk by upping the protein and good omega3 fats.

Other meals amd snaks always include a mix of fat, protein and good carbs.  Nuts are good (easy to over do), omega 3 hard boiled eggs, wild Alaska salmon, frozen vegetables, (califlour/broccoli) easy on carrots, corn, and potatoes.  Lots of greens like Kale, etc.  (iceburg lettuce does not count, it is poor in nutrients).  I eat lots of fish and chicken very little red meat (once a month)

GREAT Snack/treat - Requires a powerful hand blender to help reduce clean-up.

1 cup of triple-berry (frozen rasberry, black berry, blue berry mix)
1/2 banana
one small organic red delicious apple with only the seeds removed
a 1" cube of extra firm tofu
24 grams of whey protein
one small orange or tangerine
enough soy milk to make a thick or thin shake to your liking.
Ground flax or yogurt is optional.  This is as good as ice cream (and I love ice cream)

Chop apple, orange and banana into thumb sized chunks.  Chop the tofu smaller and blend all this in a LARGE diameter glass.  This will almost replace a meal if you want it to.  It is great after workouts and good before a meal to help you avoid stuffing bad foods.   It is also great to cool off in the summer.

TIPS: It is easy to eat right even in a rush once you learn how. In a pinch, there are decent easy items like SpaCusine frozen diners by (LeanCusine).  These are usually no transfat which means not only none on the nutritional chart (a loose standard) but also no partially hydrogenated fats in the ingredients list (a strict standard).  They have Alaska salmon dinners, also many others  There are the "Birdseye Steamfresh" veggies you can steam right in the bag in 60 seconds.  Great to add to the frozen dinner or with any home cooked meal.

A big pot of vegetarian chili packed with veggies, can be frozen and fixed in minutes.  Keep Packs of tuna,  low sugar (read label) whole wheat bread, boiled (omega 3 eggs) available for hunger moments.

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

Hawk

I think most of us could restrict calories resulting in a benefit to us.  I am leery however of the restricted calorie diets that result in longevity of worms, small animals and other species.  A lot of serious minded nutritional experts feel they do not have the same application to humans.

I think this is a very different topic than that of low glycemic index foods and insulin resistance.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

antony

Tim : i understand what you say .
The fact was when you tell me 'you don't listen or re ask the same', no, i do listenn, as i told you, i am already taking pentox, vit E, and i just replaced viagra by cialis. I had not asked about fear concerning vision before, so i just wanted to check, it's normal that it's scary, but your're right i should put this idea away from my head, but you can understand that i ask me some interrogations, it's not a small thing that taking daily viagra during 1 year ... The only thing i haven't taken yet is l-arginine, and it's not because i don't listen to you but doctor had told me it was useless, but i will try it. I had also bought a VED ,one doctor adviced, a cheaper one (i have few money) in a sex shop , and sadly i lost my money coz it does not work at all (i bet there is not enough pressure in it).
So i do understand all what you say, but don't say i'm not listening, but because i have some fears and there is EVOLUTION (in the bad way) in my problem, i had to re-ask (to check) one question, that i thanked you to answer.
I don't consider you like a library book (??!!) but sometimes check general information coz i supose you have already passed by this trials and it's efectively easier for me you give me a clear response (if of course you know it), than checking it in hundreds pages of information in english (in the contrary, if you were on french forum, you would feel the same). It's as simple as that in my mind, sorry if after there are misunderstandings acording to language.
And i admit there is often dispair in what i say...i understand what you mean in 'paralysis of analysis' but i do the work however. And i just bet you can understand this despair -even if you do believe that its not a good choice to stay in it, that i agree of course (but its stronger than me).
And i've always thanked you for each precision, i do apreciate this help, of course less being agressive.

Antony

antony

Georges, i understand that combination of genes (that we can't change yes) and bad diet can lead to scar/fibrosis , but once it is done and it has already bad scared, after a trauma, do you think diet is able to help to dissolve the scar done? I was seeing an acupuncturist who dealt also with herbs and food, he was telling me that good diet was something to know at the younger age when you are child, and it was very important in 'preventive' of illness, for avoiding it to appear. But once done, that it would not permit you to heal.

George999

Quote from: Hawk on December 14, 2007, 12:54:24 PMI am not sure I have the time to engage in this conversation but first, I wonder if this should not all be moved to "A New Theory" topic.

Hawk, I totally agree that this is off topic for this thread.  However, I think it is much more relevant to Peyronies than many of you would like to admit.  I also think it is off topic for the "New Theory" thread because there is just so much scientific data to back up the relevance of diet that to label it as "New Theory" borders on the ridiculous.  For example, it is a known fact that Peyronies cross-linking is based on the glucose-protein interaction that causes the very same problems suffered at a high level by people with diabetes.  The link is there and it is only being reinforced by new studies left and right on a daily bases that demonstrate the huge impact that diet has on health and the what are now obvious links between diet, fibrosis, cancer and all the rest.  So move it all if you like or you can be proactive and start a new link on the whole glucose/protein link and AGE topics.

Quote from: Hawk on December 14, 2007, 12:54:24 PMFirst, as you no doubt know, MANY fruits have a high glycemic index, bananas, and raisins are just two.

I am not sure about "many", I would consider bananas one of a few exceptions and not extremely high either.  At 51 on a scale of 0-100, that sounds more like moderate.  They are often referred to as "high" since they are on the high end for fruit.  Pineapple is another example at 66.  As for raisins, they are only dried grapes and grapes are not high glycemic food.  They are a little higher at 64, but the real problem with dried raisins and MOST other dried fruit is that they usually soak them with corn syrup as part of the processing.  READ THE LABELS!   I steer completely clear of dried fruit for this very reason.  Most of the bad stuff comes in supposedly healthy, even organic type stuff that is really just more unhealthy processed food that is marketed with a stealth "healthy food" sales pitch.  But if you mix your fruit up you will come up with a good balance and a real decent overall GI number.

Quote from: Hawk on December 14, 2007, 12:54:24 PMSyrp like that in many canned fruits and fruit cocktail is as bad as anything we can consume from the point of glycemic index.

Canned food IS processed food by definition and therefore reading the label is absolutely mandatory.  The ONLY canned fruit I will touch is the stuff packed in fruit juice (usually pear juice).  I even avoid canned fruit with artificial sweetener, since that can increase hunger (unlike pear juice) AND research is showing that diet soft drinks promote diabetes just like conventional ones.

Quote from: Hawk on December 14, 2007, 12:54:24 PMWhen we do include a higher glycemic index food, it can be buffered (its effects diluted) by consuming some protein  & good fat just prior or with the higher glycemic index food.

So why not try to stay with lower GI food and buffer that?  The whole idea is to get glucose and insulin down as low as possible.

Quote from: Hawk on December 14, 2007, 12:54:24 PMBreakfast: Old Fashioned Quaker Oats with 2 tablespoons of ground flax seed, and 10 grams of whey protein added.  I throw in about a 1/2 cup of blue berries and half of a banana and use good tasting vanilla soy milk.  The soy milk is my preference.  It is actually worse on the glycemic index scale but lower in fat and better for prostate cancer issues.  The flax seed and the whey help buffer the sugar present in the banana and soymilk by upping the protein and good omega3 fats.

Sounds reasonable to me.

Quote from: Hawk on December 14, 2007, 12:54:24 PMOther meals amd snaks always include a mix of fat, protein and good carbs.  Nuts are good (easy to over do), omega 3 hard boiled eggs, wild Alaska salmon, frozen vegetables, (califlour/broccoli) easy on carrots, corn, and potatoes.  Lots of greens like Kale, etc.  (iceburg lettuce does not count, it is poor in nutrients).  I eat lots of fish and chicken very little red meat (once a month)

I would disagree on nuts.  I find it VERY hard to over do on nuts.  The reason is that I simply don't buy processed nuts.  It is the nuts that are salted and/or roasted that I can't get enough of, but they are unhealthy anyway so why have them around.  I always carry around raw peanuts or almonds.  No problem with over consuming those, my gut tells me when I've had enough and that doesn't take long.  But a lot of nuts on the market are even laced with corn syrup (its everywhere).  You eat those till your gut bursts and not be satisfied.  Nuts are hugely maligned by nutritionists for just this reason but some really top nutritional experts are really advising nuts right now, RAW NUTS.  As for potatoes, I avoid them entirely except for an occasional treat.  Although they are not terribly high on the glycemic index, they are loaded with starch which presents other problems.  Starches are actually as bad as sugars and transfats and in some ways worse than sugars.  They should be consumed very sparingly.  Sweet potatoes and yams are much healthier.


Quote from: Hawk on December 14, 2007, 12:54:24 PMGREAT Snack/treat - Requires a powerful hand blender to help reduce clean-up.

1 cup of triple-berry (frozen rasberry, black berry, blue berry mix)
1/2 banana
one small organic red delicious apple with only the seeds removed
a 1" cube of extra firm tofu
24 grams of whey protein
one small orange or tangerine
enough soy milk to make a thick or thin shake to your liking.
Ground flax or yogurt is optional.  This is as good as ice cream (and I love ice cream)

I like ice cream and frozen yogurt as much as anyone, but frozen yogurt is far worse for the health than ice cream in spite of its healthy reputation.  That is simply because yogurt is incredibly sour and in order to make it palatable, it is loaded down with sweetener.  VERY BAD.  We have had people comment to us that their diabetes is out of control and they can't figure out what the problem is.  It doesn't take very long to find the problem.  Their doctor has told them that all manner of yogurt is fine for them to consume.  So they are sucking in the sugar without even being aware of it.  Lots of people have no clue as to how much sweetener goes into yogurt products.  And all forms of sweeteners are bad.  I love it, but I avoid it as much as possible except for an occasional treat and then I make sure I am aware of the cost.

- George

George999

Quote from: Hawk on December 14, 2007, 01:21:05 PM
I think most of us could restrict calories resulting in a benefit to us.  I am leery however of the restricted calorie diets that result in longevity of worms, small animals and other species.  A lot of serious minded nutritional experts feel they do not have the same application to humans.

I think this is a very different topic than that of low glycemic index foods and insulin resistance.

Hawk, the whole effort to lower consumption of high glycemic foods is a strategy to lower calorie intake.  The problem is NOT just the carb content or carb quantity, but it is also the overall caloric intake.  They are all linked together because if you could cut your carb intake to zero, you could still have a blood glucose problem because our bodies are very good at converting foods from one type to another.  Fat to glucose, protein to glucose, etc. That is precisely why people abstain from fats and can't understand why their cholesterol levels are so high.  The docs answer is that its "your genes".  They say that its your body that is "creating" the fat.  Well thats all very convenient for the drug companies.  The answer of course is an expensive pill every day.  In reality the problem is that these people are consuming too many calories, sugar, starch, protein, whatever, and their liver is merrily converting all of that to fat.  So in spite of their rigid diet, their cholesterol remains out of control.  The same with diabetes.  You can restrict sugar all you like, but if your calories are out of control you will get nowhere.  The doc will likely just chalk it up to bad genes and stuff you with insulin till your kidneys give up.  If you carefully study the whole process of AGE creation, you discover that this whole dietary nest is interlinked and the root key IS calorie restriction.  And a major key to ACHIEVING calorie restriction is avoiding high glycemic foods.  But this is still not the whole story.  When you sufficiently restrict calories, you activate the SIRT1 gene releasing sirtuins that have the effect of protecting the bodies cells.  This whole area is huge and offers huge benefits to people with Peyronies.  - George

meanmrmustard

You guys might want to check out pomegranates, seems to be a very powerful fruit in terms of anti-oxidation and so on http://en.wikipedia.org/wiki/Pomegranate

kind of time-consuming to prepare though. a plus is, that it tastes really good, especially the juice! (if you like sour, that is)
24 yrs, ED for 5 years after bending erection sharply, getting worse and worse, no diagnosis, no Peyronies Disease

George999

Quote from: antony on December 14, 2007, 01:58:48 PM
Georges, i understand that combination of genes (that we can't change yes) and bad diet can lead to scar/fibrosis , but once it is done and it has already bad scared, after a trauma, do you think diet is able to help to dissolve the scar done? I was seeing an acupuncturist who dealt also with herbs and food, he was telling me that good diet was something to know at the younger age when you are child, and it was very important in 'preventive' of illness, for avoiding it to appear. But once done, that it would not permit you to heal.

The problem is that the problem is ongoing.  And the question is: Do you want it to potentially get worse from here?  Good diet may not fix the problem, but I may very well prevent more damage.  And if you can stop the continuing damage, there is then greater possibility that you can use Pentox or whatever to repair the existing damage.  But you are not going to be able to fix the damage already done if you don't stop the process from continuing.   - George

antony

Georges, yes i see what you mean. But in order to stop continuing damage (for pentox or others have greater chances to heal then), so do you think it's better to stop intercourse too? I have no response from doctors too, they tell me contrary advice on it (one says to continue, the other to stop). I feel as if i continue intercourse (even in very crap condition and with cialis, can't do without medicine), i damage more the tissues, coz penis is weak, and so i will never stop the process  continuing, so maybe after medicine like pentox can't be used to heal. But if i do not practice sex at all, then the penis is ALWAYS dead and NEVER moves, so it's not good too, coz everybody, with not activity at all, will have some fibrosis after a moment. So i don't really know how to act, and it's not the doctors who know it...

George999

Quote from: antony on December 14, 2007, 02:37:26 PM
Georges, yes i see what you mean. But in order to stop continuing damage (for pentox or others have greater chances to heal then), so do you think it's better to stop intercourse too? I have no response from doctors too, they tell me contrary advice on it (one says to continue, the other to stop). I feel as if i continue intercourse (even in very crap condition and with cialis, can't do without medicine), i damage more the tissues, coz penis is weak, and so i will never stop the process  continuing, so maybe after medicine like pentox can't be used to heal. But if i do not practice sex at all, then the penis is ALWAYS dead and NEVER moves, so it's not good too, coz everybody, with not activity at all, will have some fibrosis after a moment. So i don't really know how to act, and it's not the doctors who know it...

Antony, I think the point is not whether to participate in sex or not to participate in sex.  The point is to be prudent and do it in a way that does NOT cause further damage.  Just try to be cautious.  In this sense masturbation is probably safer because you are in complete control while having sexual relations with another person puts you at risk that no matter how careful you are, they may not be careful since it is your problem, not theirs.  Additionally, even in a sexual setting, one of the warning signs can be pain, and it is probably easier to respond appropriately to pain in a masturbation setting than in an intercourse setting.  And in terms of penis health, masturbation can provide just as much beneficial stimulation as intercourse without the associated risk.  Sorry to be so blunt here, but I am just trying to express this as clearly as possible.  I would also hasten to add that a VED might be an even better solution since it offers far more benefits than either intercourse or masturbation in terms of penis health and it is very likely to relieve your symptoms to a large degree.  - George

antony

Ok thanks George, i see what you mean. In other words it would be better to stop all intercourse, exept very very careful ones (that is not really possible to ask to the girl)....
I was feeling the same, even if living without that is a ****, and will definitely break my couple, but if i have no choice...
I would add that when i tried with cialis, i had no pain during intercourse (but no sensation), but real pain the days following...
Anyway, i will see for buying a VED soon. Antony

pal-31

Hi End_t,

I just wanted to say that you could try Acytel-l-carnitine. It is a supplement that seems to help with the pain. I take 1 x 500 mg of this supplement twice a day before a meal and it has eliminated 98% of the pain.

Good luck and let us know how things go

Pal

Tim468

Wow = I like it when I learn new things.

Several comments. Thanks to Antony for your comments - it helps to hear. Please learn that you will do better when yo listen and act. There is a limited value to misery - it IS a choice.

George and Hawk, thanks for your thoughtful comments on diet. I am making gradual changes i intake, but it is clear that I still let too much concentrated starches and fats into my diet.

The VED allowed me to take care of my daily needs for an erection without going crazy. I was torturing myself emotionally by trying to have sex (with myself or with others) and the VED allowed me to finally get my penis filled with blood and stretched out on a daily basis without it being linked to the complicated fact of impaired sexuality for me. That is, trying to have intercourse whe nI felt sad or miserable about my Peyronie's Disease was hurtful to me. Looking at porn to get hard when I was alone was hurtful to me. Now I have a healthy way to take care of that need without it driving me crazy.

And very careful sex can be extremely erotic with the right partner.

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

Hawk

Quote from: George999 on December 14, 2007, 02:19:35 PM
Hawk, the whole effort to lower consumption of high glycemic foods is a strategy to lower calorie intake.  The problem is NOT just the carb content or carb quantity, but it is also the overall caloric intake.  
George, I have a significantly different understanding.  The effort to lower consumption of high glycemic foods is to prevent glucose/insulin SPIKES.  It is of course true that we can overdo anything which was my point that calorie dense unprocessed nuts can be overdone.  Even olive oil is fat, and fat is calorie dense.  Andrew Weil M.D.warns about this is several of his books (not my favorite author).  The problem is not glucose alone since glucose is the ONLY thing our muscles can burn.  Our legs, heart, and brain need glucose to live and work.  The problem is the rapid release of glucose that in turn spikes insulin.  This rapid release comes from foods with relatively high glycemic characteristics not from the slow steady conversion of fat to glucose.   The biochemical/ physiological results of glycemic foods are complicated but include many things such as; locking out fat conversion to glucose, insulin resistance  (making weight loss more difficult).

QuoteThey are all linked together because if you could cut your carb intake to zero, you could still have a blood glucose problem because our bodies are very good at converting foods from one type to another.
I do not think a person is LIKELY to have a high glucose problem if they could cut to zero carbs or very restricted carbs) as you suggest.  Their levels would be very steady and maybe low in the beginning until the body regulated itself. Everything I read indicates the problem is the qlucose rush that is followed by the insulin spike.  These are is the result of refined carbs and other high glycemic index foods, especially when they are dumped in a digestive system containing no fats and protein to slow absorption.

Nicholas Perricone M.D. is one author/lecturer that discusses his process in detail, along with the collagen problems that result.  He also recommends  diets to prevent this process.

PS: for claity to other readers.  I was not advocating ice cream.  I was stating that even as an ice cream lover, I am pretty satisfied by the very healthy fruit smoothy in my previous post.  :D
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

George999

Hawk, You are actually half way there with your understanding on this.  Consuming high glycemic foods does indeed create glucose/insulin spikes in the bloodstream and this is indeed bad in its own way.  But it is precisely these spikes that stimulate cellular insulin resistance which in turn raises basal insulin levels which in turn causes us to gain weight which in turn causes us to experience more hunger which in turn causes us to consume more overall calories which in turn causes us to enter a continuous weight gain cycle/syndrome which in turn fuels all of these health problems including Peyronies.  Having said that, I would add that some people, due to their genetic makeup, tend to skip some of those steps.  Some might not have a lot of obvious weight gain, for example, or even pronounced rise in their insulin levels, but they still end up consuming ever more total calories and the result is health issues.  That is why some very thin and athletic people, who are "able to eat everything", end up having cholesterol problems AND cardiac issues.

I also disagree with you on the idea that cutting carbs to zero would eliminate the glucose problem.  I would suggest that an insulin dependent type II diabetes sufferer could have high glucose levels even without consuming carbs in the absence of their insulin injections, since the body could easily produce glucose faster than it could eliminate it.  But I admit that that is all a theoretical abstraction and of no great use to our discussion other than to point out that ALL serum glucose comes from our diet and not from "our genes" as the drug company PR likes to suggest.  The whole "genetic" argument is just one big excuse for people not to address issues with their diets.  Everybody just wants a pill or a shot so that they will not have to accept responsibility for their lifestyles in terms of diet and exercise and I suspect that that is all about to come crashing down with the health care crisis and the reality that social security and medicare are quickly running out of money with no real relief in sight.  And I am not intending this to be pessimistic, but I do think that in the absence of people being willing to take charge of their own health, we will see some not so good things coming in the near future.

I say all of this as one of those same people, who finally got tired of the dependence on drugs and, through diet, have been able to eliminate two major problems from my life.  First of all, long standing hypertension, and second, a problem with a bladder that, two years ago had lost enough of its elasticity that I was not able to empty my urine and was constantly fighting urinary tract infections and now it, after a recent ultrasound test, it is looking completely normal.  Thats what can happen when you decide you don't want to live the rest of your life with a catheter and take positive action to do something about it.  And a huge part of that positive action was diet.  - George

Hawk

Quote from: George999 on December 14, 2007, 02:01:33 PM
As for raisins, they are only dried grapes and grapes are not high glycemic food.  They are a little higher at 64, but the real problem with dried raisins and MOST other dried fruit is that they usually soak them with corn syrup as part of the processing.

George,  I actually put few foods in my mouth without reading the label in detail.  We buy 2 major brands of raisins and neither of them are sweetened with corn syrup.  Both common grocery store brands have only one ingredient -> Raisins.  In fact I do not recall ever seeing any actual packaged raisins that were sweetened.  Raisins themselves are often used to sweeten other foods.  They are naturally sweeter than grapes because they are dehydrated and thus the sucrose is concentrated.  This raises the topic of one reason fruit juices are not usually a wise choice.  I would also argue that a glycemic index food of 64 is pretty high to be throwing in on an empty stomach.  Combining it with some good fat and protein is likely to be healthier even though it may be an increase in calories.

George, we clearly draw some different conclusion from our study. These are far from simple clear cut issues.  Many argue that cholesterol of any kind is not the culprit by itself.  My mother had cholesterol of of 320 - 340 (HDL/LDL ratio were not good).  It was known to be at that level for almost 2 decades.  She had an angiogram when she was near 80 and the cardiologist told her she literally had the arteries of a 16 year old girl with no beginning signs of arterial or heart disease.  He explained that it is not really rare that he finds similar cases where high cholesterol does not translate into an enemy.  This cardiologist mentioned that he had a heart attack at 48 years old with very good cholesterol readings.  Many suggest that poor arterial health from lack of nutrients like vitamin c is the real factor.  Clearly genetics do play a huge role.


PS: it is getting time to move these posts because they are far off the topic of whatever topic this is supposed to be. :D
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Kimo

Hawk,,I know this is off topic, but just to back you up on this cholesterol issue...High numbers run in my family. My grandmother had a number well over 400 for many years, didn't watch what she ate and died at 96 yrs of age with alzhiemers,,,i used to watch her eat a lot of sweets....My mother's numbers have always been arond 350 and she's 84, she has been able to get her's lowered...Where as for me, i have always watched my diet very close and my numbers would run around 275,,,low sugar, low to no fat in my diet....I just had my cholesterol checked yesterday and i finally got it down to 239 and i really watch what i eat closely,,so it has paid off for me....My doc said i was fine and not to worry, just keep doing what i have been....

I do read labels a lot,,but thats because of my wifes diabetes too,,,but it's good for both of us...

kimo