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

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

jackisback

Quote from: George999 on April 28, 2008, 10:10:32 AM
Years ago researchers concluded that only the Alpha Tocopherol form of Vitamin E is important because Alpha Tocopherol is the ONLY form that the human body is capable of storing.  Over time that conclusion became a sort of common wisdom in the medical community.  But recently new discoveries have been made:

1)  Supplementing with Alpha Tocopherol causes the DEPLETION of the levels of some and perhaps ALL of the other seven Tocos in the body.

2)  Supplementing with ANY of the other seven Tocos causes levels of Alpha Tocopherol to rise INDEPENDENT of Alpha Tocopherol supplementation.

3)  Continuing research is showing the other seven Tocos to be just as important and perhaps more important nutritionally than Alpha Tocopherol.

4)  A lot of the benefits of the OTHER seven Tocos are related to things like Nitric Oxide metabolism and thus are potentially very important in dealing with issues like Peyronies.

Based on the above points, I am moving to supplements that provide very little Alpha Tocopherol and substitute large quantities of the other Tocos.  For example, I am now taking 1200mg of Gamma Tocopherol with only 200IU of Alpha Tocopherol.  In any case, READ THE LABELS if you want to know what you are getting.  Anything saying simply "mixed tocopherols" does not supply much other than Alpha Tocopherol.  Those products supplying significant quantities of the other Tocos will list the amounts in milligrams on the label.  I am currently using these two products:  Jarrow Gamma EJarrow Toco-Sorb  - George

Hey, thanks for the information, George. I'd like to ask the other members of this forum: is this generally the consensus here that everybody follows? it makes sense to me.  my current E is like you said "mixed toco"s.  I will purchase this Gamma E 300, but the other one you cited is out of stock :(

If anyone else thinks they have an optimal regimen of the types of E to take, please do state which ones it is, since it can be hard to navigate the different brands online to find the best one.

jackisback

Also, many have mentioned that you need to check your bloodwork frequently if taking excess E. But how does one do this? I have had just one bloodtest, and it required a prescription. How could I check this more frequently? Would I have to tell the doc "oh I am taking over 1000 mg of E every day". I don't think many docs are going to like that.

Old Man

jackisback:

That is a good question as to how you can get doc to get blood tests for you. It is probably based on what insurance plan you have, and, if you are on Medicare in the USA or whatever your insurance plan will allow for bloodwork.

I have Medicare plus two other supplemental plans and they pay just about all expenses for my medical needs.

Suppose that you could tell your doc that you are taking E, just don't tell him how much. But, you understand that you need to have the check to preclude a toxic buildup in your blood stream. Most docs will comply with you when you work with them.

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

Jack, Vitacost has the Toco-Sorb product in stock (Jarrow Toco-Sorb).  They also have a similar product by NSI (NSI Tocomin SupraBio Palm Tocotrienol Complex).  - George

ThisSux

Hi everyone,

I know some here on the forum (including myself) take Maca for libido raising purposes (among other reasons) and by chance I stumbled across some info that seems a bit worrying.

It seems that Maca may raise levels of Insulin-like growth factor -1 (IGF-1) according to this study: http://tinyurl.com/69535k and a few other references I have seen online, though I admit to not being a doctor/researcher and not thoroughly understanding these studies.

Whereas apparently there are some studies that show IGF-1 can extend lifespan and rebuild damaged joints, according to http://tinyurl.com/67h9sd "Elevated levels of circulating IGF-I have consistently been associated with increased prostate cancer risk. "

Does anyone with a more thorough knowledge of the subject have any insight into this?

TS


Iceman

jackp - thank for your reply - do you think that if you had taken pentox 12 years ago when first diagnosed with Peyronies Disease you would not have have these further complications? What Im trying to ascertain is,. do you feel that medicine has come along a bit further and is a bit more sophisticated in its dealings with Peyronies Disease; and I am particularly referring to pentox and ACL and L arginine etc.

Thx

jackp

Iceman
I can not give an honest answer as to new treatments. The one thing that I wish would have happend is that the doctor had let me know what to expect.
If I knew then what I know now I would have been using the VED from the start.
I also would have had the implant when first diagnosed with Venous Leakage, and not used shots for Erectile Dysfunction.
Hind sight is a wonderful thing????
I keep looking to the future. Looking at implant doctors and trying to make an informed decision on which to use or let the original doctor retry. A tough decision!! Have an appointment June 3 with another implant doctor whose bio was on the AMS web site.
How long have  you had Peronies? If less than 18 months you have nothing to loose trying todays meds. I got lucky in a way that the curve corrected, but da## it left all these side effects.
Use the VED like Old Man says. It can save you from loss of size, and other side effects. IMHO
Lots of Luck
Jackp

[url=http://www.peyroniesforum.net/index.php/topic,890.0.html]My History[/url]

Iceman

jackp - ive had Peyronies Disease for 5 - 6 months now - but I am a little reluctant to use VED. Firstly my uro said not to use this and secondly I am unsure of how it works and the benefits versus the negatives - can you advise please..

Thx

Old Man

Iceman:

First, this post should be under the VED topic and Hawk may move it there after a few days.

Now, about VED usage from the start of observing Peyronies Disease symptoms. Most uros/doctors are not familiar with VED usage and its effects on Peyronies Disease symptoms. After many years of trying just about everything, I discovered a secret about VED usage. If used properly with extreme caution and good judgement, it can and will help most Peyronies Disease cases. There is little danger in causing further damage to one's most valuable prized body parts if it is used in moderation and not causing pain or discomfort while using it.

There are many of us on this forum that have had at least some success with VED usage. I can understand your caution in not using it since your doctor would not recommend its use. However, my personal uro has had many years of VED therapy for her patients in private and VA hospital practice. She maintains that proper use of it can and will help most Peyronies Disease sufferers. She is responsible for me trying a modified protocol and it proved very successful for my case.

So, you might want to solicit the advice of a second opinion from another uro as to whether or not it would be advisable to use the VED.

If you have any questions about its use and how to, etc, let me know and I will be glad to help in any way possible.

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.

Iceman

Has anyone out there had any success with Neprinol ?? - I originally bought 4 bottles and have gone through 2 of them in the past 3 months - it would be great to get some feedback from any people out there...

George999

As one who went through a lot of Neprinol, I would have to say that it is worthless when it comes to treating Peyronies.  It was definitely helpful in curing my chronic bronchitis, but it did nothing beneficial for my Peyronies.  At this point, I have some of it left which I will eventually use up and I will not be ordering more.  I do NOT recommend it for Peyronies.  - George

jackp

Iceman
I can only agree with Old Man. Most uro's do not have a clue at least mine did not over 12 years ago. Mostly interested in cases where he could make the big bucks. I can say that now that I have seen at least two others.
I do not know if the curve would have corrected without the Vitamin E and Potaba or not. I have to give him credit for putting me on it and God the credit for the curve reduction.
I was given the prescription for the VED for Erectile Dysfunction and not Peronies, but that was over 10 years after the first Peronies symptoms.
I can not help but say if it is not good for corporal fibrosis, like the uro said, why would it not be good for Peronies?
A second opinion is always a good idea.
Lots of Luck
Jackp
[url=http://www.peyroniesforum.net/index.php/topic,890.0.html]My History[/url]

ComeBacKid

Iceman,

I don't believe that 30% of sufferers of peyronies disease will heal on their own, I simply don't believe it from all the people I talked to.  As far as the VED, I did use it and it will enlarge your penis while you use it, the effects lasted for me for about a month after I quit using it.  It did seem to help my erections "fill up," the key is to be light with the pumping and not overpump your dick!  I remember the first time I tried it, I put the pump down and didnt like it.  I then picked it up weeks later and got used to it.  I'm getting ready to go back on a course of pentox as well.

comeback
[url=http://www.peyroniesforum.net/index.php?topic=899.0]My History[/url]

Iceman

comeback kid - you said youre going back on pentox - why did you give it up and did you have any success with it???

jackp

Iceman
I need to proof what I wrote last time. What I ment to say was.
If a VED is good for corporal fibrosis why would it not be good for Peronies!
Jackp
[url=http://www.peyroniesforum.net/index.php/topic,890.0.html]My History[/url]

jayhawk

Guys,
After 14 months, my peyronie's has stabilized, the pain and discomfort which comes with this disease is gone, is there any benefit in continued use of pentox?
Thanks,
Jayhawk

Iceman

jayhawk - how long have you been pain free?? - is there any bend remaining or has it cured itself since the disease has stabilised- ie..whats the state of the old fella..

jayhawk

Iceman,
I still have a curve, up and to the left about 20 degrees and I can still feel the plaque, but no pain. The curve has improved, as well as the firmness of my erections.
Jayhawk

Tim468

JayHawk

First off, I am so glad for you. What you are left with sounds like better than you thought might be the case. Funny how life can change and what seemed intolerable, later can seem great. a 20 degree curve without Erectile Dysfunction is a lot better than it could be.

I know of no data to really guide your hand. I note that one patient in the medical literature went for two years, as he saw continued improvements and wanted to keep going. It seems reasonable to go a bit longer to see if you can gain any more back - but for how long? Just guessing, I thin that if six months of therapy continue without firther gains, then that is it. OTOH, if stopping leads to worsening, then I would not hesitate to restart it.

Are you using the VED with your use of Pentox? That might lead to further gains in angulation or length (as might also using a traction device).

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

jayhawk

Tim,
Just started the VED, will give it a go and keep using the Pentox.
I guess my question is about possible side effects of Pentox with long term use? if there are none I will keep using for a few Months and see if I can notice anymore improvement.
Jayhawk

ComeBacKid

I had to give up the pentox cause I got a virus and had to keep my immune strength at full throttle to battle it off, it was a skin virus.  It has finally cleared up and I'm ready to go back on pentox.  I like jayhawk also saw increased firmness in erections, better quality all around and my flaccid lenght was bigger.  I was doing ved for some of the time i was on pentox, then i quit the ved and kept taking pentox for at least 9 months.  After i had to quit pentox I figured my penis would go back to being bad again but it did not.  It has stayed pretty good now.  Now i'm fired up and ready to go, i got so much pentox its not even funny, i got bottles of it.  I didn't wwant my prescription to run out, so i just kept getting it and not using it.  It is still good though.  I had absolutely no side effects from pentox, except jittery legs in the beginning, but that went away after awhile.  If it has helped you i wouldn't quit it, I would stay on it and just keeping it, it is proven to be very safe unless you have a pre-existing condition.  Dr. Lue has many studies that show it works, just keep taking it, take it longer than six months, you need to be on it like a year.  It takes awhile to work and kick in, i think some people give up to early.  I'm getting ready to get on it again. 

Comeback
[url=http://www.peyroniesforum.net/index.php?topic=899.0]My History[/url]

Iceman

comebackid - ive been using pentox for 3 months now and there are no side effects and Im quietly confident its working - i originall bought neprinol and natto so i am taking these as well so I dont feel like I am wasting my money ( im also on ACL + L arginine) - do you think this is too much of a cocktail of medicine???
Also, at what stage did you notice improvement  using pentox ( after how many months??))



old man - thanks for your reply - I really think you are wonderful in helping so many people - youre a champ

Tim468

Hey comebackkid - good to see you again (once I figure out who you are with all the name changes - good thing that old posts get their name changed too). It sounds like some good stuff is happening. I hope that has buoyed your spirits.

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

George999

Its good to see that some of you are seeing some positive results with Pentox.  I am absolutely convinced that Pentox works.  It can only work slowly since its effectiveness is limited roughly to the rate of collagen turnover, since it cannot repair existing damage, but can only prevent new damage.  This is very important because when collagen "turns over" within an affected area, the surrounding damaged tissues and the cytokines they emit will cause the new tissue to be damaged very quickly.  This is what Pentox prevents from happening.  And as new undamaged protein is slowly added, affected tissues will gradually regain flexibility. Its a frustratingly long process, but it is possible.  I am happy for you all.  Thank you so much for sharing.  Hopefully many more will benefit from Pentox.  - George

newguy

George999 - I certainly believe that medication-wise pentox is perhaps the most powerful weapon in Peyronie's sufferers arsenals. It's just such a shame that knowledge of the condition is so very limited, and culturally those with intimate injuries tend not to seek immediate help. Not to mention that urologists are often in the dark about even some of the treatments that are regularly discussed here.

Imagine the /pre-cautionary differences between someone, who following penile injury, is just told to 'go home and see how it goes' only to see their condition worsen, compared to someone immediately starting meds, VED and gentle traction as a preventative measure. I think there would be a world of difference with their end result.



[url=http://www.peyroniesforum.net/index.php/topic,893.0.html]My History[/url]

sams

Hello,
I am also a new sufferer of this disease or whatever you call it, and has recently experienced curvatur to the left, along all the other symptoms related.  The doctors appointment is not before a month from now, and i am convinced that there wont be any conclusions from that meeting.  However, i believe that i probably find myself in the early stages, and would like to do something about it.
What do you gentlemen in this forum suggest i should do to stop/treat this problem in effective way, which maybe could make a difference in the end as you state?

newguy

Just my view:

I would suggest that you immediately start on:  Vitamin E - Pentox - Acetyl-L-Carnitine (don't make the mistake of buying L-Carnitine - make sure it's the 'aceytl variety). I'm not entirely sure how the health system works in the states, but you really should try to get hold on pentox.

and begin using a VED and maybe even start very light traction.

With all of those tools in your arsenal, you should find yourself in a better position than you otherwise would. Having to wait a month for advice that, in my opinion, will not provide you with anything of additional value to what I've mentioned is not the best start. I think, as you're currently in an active phase of the condition, you should act as soon as you can.

For are more sounded view of the condition and treatments, check here: http://www.peyroniesforum.net/index.php/board,18.0.html
[url=http://www.peyroniesforum.net/index.php/topic,893.0.html]My History[/url]

sams

I live in Norway, and It is impossible to get these things here.  I might get prescription for pentox from the doctor about a month, however i can not see how that and ACL can help with the disease which improve the bloodflow.  In my opinion bloodflow increase could be done with physical activity which i have lots of (3hrs of tennis, running...). 
VED/Traction therapy devices don't exist here, but could it cause any harm? Have anybody's symptoms really improved? I would of course like to do something, without causing anymore damage.

jackp

Sams
I would suggest that you start Vitamin E 400 IU at least twice a day. VED therapy would be a great help. Old Man may be able to tell  you how to get a VED in Norway.
Follow his routine it will be slow but help a lot. After all this time I have gained back between 1/4 to 1/2 inches with the VED.
Over 12 years ago when Peronies hit my Uro put me on Vitamin E 400 IU three times a day and potaba. About 18 months later my curve corrected but left all the ugly side effects, loss of size, Erectile Dysfunction, Venous Leakage and finally corporal fibrosis.
I firmly believe that if the Doctor had put me on the VED when the Peronies first started I would not have lost so much size.
Good Luck!
Jackp
[url=http://www.peyroniesforum.net/index.php/topic,890.0.html]My History[/url]

Tim468

Sams.

If you can find us, you can find the tools to try to get better. true, you might fail, but it is unlikely that what we recommend will make you worse.

Note: we do not tend to recommend surgery, injections or other radical attempts to get better that many of us have had make us worse.

What we do recommend has either helped us, or helped someone else, or at least helped keep us from getting worse.

You need vitamins? I think they sell those in Norway. Sex aids? Yup - you can get them there too. Even Norwegians like to spice up their sex life!  ;) Even on remote fjiords on the sea, you can get mail eventually. No privacy? Take a trip to the big city. Not only are there sex shops in Oslo, but there is also internet access to international outlets for VEDs or traction devices.

For instance, on this web page, a Norwegian "expert" on sexuality discusses the recent upswing in use of penis enlargement devices:

http://www.dinside.no/php/art.php?id=349672

Here is a source of vitamins online - they discuss shipping to Norway and other countries and tell what might cause trouble:

http://www.iherb.com/info/shipping/ShipOtherCount.aspx

See? Without too much work you can find ways to solve problems, or to at least begin to work on them.

The bigger hurdles will be in learning as much as possible about Peyronie's Disease so that you can intelligently discuss options with your doctor. Good luck on this journey. Remember - many of us have walked down these pathways before and can stand here to help show the way. I am glad that you are here to ask for help.

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

newguy

Sams - You need to try to be proactive :). You will have no issues buying Vit E and should also be able to purchase ALC too, though if it proves more elusive there are many internet sites, which I'm sure would have no issue with shipping to Norway. The same applies to the VED. I bought mine from the states, even though I live in the UK. I did the same again with the fastsize device. I wouldn't immediately advise you to try to buy pentox online as there are no doubt lots of fake sites around. However, if you can't get a urologist to prescribe some to you, then I wouldn't blame you for exploring other avenues. The main thrust of what I'm saying is that I'm sure most companies ship to Norway even if you can't find these items on home soil.

In your position I would start taking action now. Even if you think ACL won't work, there is a chance that it will help, so I wouldn't automatically overlook it. Sure it's relevant to have a good diet, exercise and so on, but as Tim states since you've found this place, you should try to be open minded about recommended treatments.
[url=http://www.peyroniesforum.net/index.php/topic,893.0.html]My History[/url]

sams

Thanks guys for your advice.  I appreciate this. I have started with Vitamin E 1000IU, but not sure if i should start with Traction or VED.  Do you have any suggestions?
jackp, you are talking about other sideeffects including venous leakage.  Is this something that happens often in peyronie or do sufferers experience it sometimes while other times the erection is sustained. 
I have experienced venous leakage sometimes not always. I have read that if the bend/deviation is too much then it will cause Erectile Dysfunction.   Is venous leakage common in peyronie's disease that always/often happens or can it be controlled in some cases?

George999

Sams,  You need to understand that combating Peyronies is not just about increasing blood flow.  It is about stopping fibrosis.  Fibrosis is a process that tends to be progressive and very difficult to bring under control, let alone cure.  Those things other forum members have suggested below are things which have helped many of us around here to at least stop this thing from progressing and from becoming more debilitating.  Tim mentioned iherb.com.  I have ordered from them for some time now and found them to be very reliable.  Other major suppliers shipping internationally include VitaCost.  I wish you the best!  - George

sams

Thanks George,
except frmo Vitamin E, what is  appropiate to order from these websites?

ComeBacKid

Iceman-  I noticed increased erection quality immediately, this led me to believe that that pentox thinning the blood was helping the penis fill up and the effects weren't permanent.  Overtime I definately noticed an increase in flexibility, some of the "hardness," that time and i have discussed before seemed to go away, but not all of it.  Still if i get shrinkage in a cold shower, or run, my penis will still shrink and harden.  But over all when flaccid in (non cold temps) my penis hangs better and is more flexible.  I would say by no means am i cured, but it is more comfortable and finally exciting to see something that is doing something...  I've tried just about every treatment option available, tried iono, spent hundreds on topical verapamil, overall I've easily spent thousands to combat this crap.  Now i'm reloaded with pentox and ready to go, I was taking 3 pills per day, the max you can go and will do it again.  I'm deciding whether to mix in acetyl l carnitine, and vitamin e.  When i saw the improvements before I was only on pentox, nothing else. 

Tim,

My spirits are buoyed my friend, and yes i had to make some changes.  But i'm back with more pentox than ever now!  Hence my new name Comebackid!

comeback
[url=http://www.peyroniesforum.net/index.php?topic=899.0]My History[/url]

George999

My absolutely top recommendations would have to be:

1) Pentoxifylline.  Pentox will likely show early on good effects because it modifies the red cells that carry oxygen to the tissues so that they are more flexible and can fit through damaged blood vessels, thus delivering oxygen and nitric oxide to damaged tissues.  But its effects long term go way beyond this.  It actually inhibits glycation as well, thus shutting down the flow of harmful cytokines like TGF-beta-1 and oxidants which continue the process of tissue destruction.  This allows the slow process of tissue repair to proceed without the new tissue being quickly destroyed.  This is actually the most important part of what Pentox does and this is what will produce the long term benefits.  Both of the above qualities play a large role in Pentox's huge anti-inflammatory capabilities.

2) Acetyl-L-Carnitine.  ALC is yet another proven anti-glycation substance that actually has a study behind it indicating it possibly beneficial in the treatment of Peyronies.  While it will not give the short term relief that Pentox does, it should be useful over the long term in inhibiting glycation and slowing and possibly halting the fibrosis allowing natural healing to go forward.

3) VED.  Not an oral treatment, but I absolutely do want to mention it here.  I don't want to put down traction, but traction has no where near the evidence behind it that the VED does.  Countless people here have benefited from VED and it likely is able to physically counter the glycation process and bring some of the same benefits as the above mentioned products.

4) Vitamin E.  The best Vitamin E is the natural kind.  I found the common synthetic forms to be virtually useless.  I also have a deep suspicion that the seven less common Tocos, especially Gamma Tocopherol, are more effective than the common Alpha Tocopherol form.  Right now I am using only Jarrow Formulas Gamma Tocopherol and TocoSorb products.  But certainly I would make sure to at least use a good full-spec product like Now's Advanced Gamma T formula.

5) Aloe vera.  Aloe vera's wound/scar healing qualities are legendary and its benefits are likely related to its ability to accelerate collagen turnover.  Right now manufacturers are able to turn out much more potent Aloe supplements due to more advanced purification techniques.  I have personally gone from 100mg soft gels to 250mg freeze dried capsules and 500mg freeze dried capsules are now on the market.  Increasing the rate of protein turnover should increase the rate of getting rid of damaged tissue and replacing it with normal tissue.

6) Diet.  A healthy diet is extremely important.  And that means getting rid of unhealthy food like refined carbs, heavy starches, processed foods, bad fats, excessive red meat animal protein and other stuff that encourages glycation.  The idea is to get the most nutrition possible out of the fewest calories possible.  Reducing calorie consumption is imperative, but starving yourself is not an option since it will only cause other bad things to happen (like rebound weight gain, etc.).  The solution is not in counting calories, but in eating nutrient dense food and training yourself to stop eating when your hunger is satisfied.  This is really difficult in our modern society due to social pressures to devour calories, but it will pay great dividends.  Helpful websites are Dash Diet and Real Age.

7) Exercise.  Exercise is extremely important and can make a huge difference in glycation levels.

8) A lot of other things may be benificial, but the above is where I would start.  Examples of other things would be Arginine, Horny Goat Weed, Mangosteen, etc.

-  George

Iceman

comebackkid - thanks for your reply - quick question - so in your opinion you feel like your curvature has improved because of the pentox regime and nothing else - it makes me wonder if this is the case with you and what george9999 said in his last thread why dont all uros prescribe this??????

newguy

Iceman - They just aren't as up-to-speed on the treatments as they should be. Stories such as the one where the uro looked through an old medical journal and handed out some Vit E are all too common. As for why they aren't aware of new treatments, I suppose it depends on their area of interest. There seems to be a certain lack of compassion towards peyronie's from some quarters. Finding a good urologist is hard, something I haven't been able to do in the UK.
[url=http://www.peyroniesforum.net/index.php/topic,893.0.html]My History[/url]

percival

Pentox treatment continues to sound promising. Is there now enough evidence to show that it really does help cure Peyronies Disease? A members survey would help.
Doctors here in the UK are unlikely to prescribe it unless there is good evidence that it helps (and even then would need a lot of persuasion). So far we have lots of anecdotes. Is there anyone on this forum willing to tie it all together and produce a report? Perhaps there is a proper clinical trial going on - if so when will it be completed? In the absence of any other treatment, it is important to verify the effectiveness of Pentox.
Regards
Percival

Iceman

newguy- to speak to a top uro I flew to san francisco from australia just to spend 30 minutes with Dr Lue - it might be worth a visit for you - have you heard of him??

newguy

Iceman - It's definitely something I'll consider as I have been to SFO on occasion in the past. As you may have read elsewhere I can currently worries that I may have injured myself recently. However, I'm taking all relevant meds and have a VED at hand, and as my recent pain is lessening, it seems that I'm doing all that I can anyway. If I notice any changes I will certainly make the leap to go further afield if I cannot find a urologist well versed in this area in the UK. Should I be fortune enough to not have made the problem worse, I will just continue with the VED and meds for the foreseeable future and give that a solid year or two to see if I can improve my curve, and re-evaluate at that time. In the meantime I will of course look out for any new developments. I know nothing can really move fast enough for us when we're suffering from this problem, but when you consider that pentox is a fairly new addition to the arsenal, it goes to show that there's always hope. Looking forward, I'll be excited to start hearing (hopefully) positive stories bubbling to the surface from the clinical trials that are going to take place in 2008/9.

Quote from: Iceman on May 11, 2008, 09:03:44 PM
newguy- to speak to a top uro I flew to san francisco from australia just to spend 30 minutes with Dr Lue - it might be worth a visit for you - have you heard of him??
[url=http://www.peyroniesforum.net/index.php/topic,893.0.html]My History[/url]

Iceman

newguy - are these clinical trials of pentox? who is conducting these trials and how did you hear about it?

newguy


No sorry, I was talking in a more general sense... the Auxilium trials for instance. As far as pentox is concerned, I have only heard about the tests done on rats that suggested it could be a worthwhile treatment, as well as how it acts upon other medical conditions. I have seen both positive and negative results to studies relating to ALC tho.


Quote from: Iceman on May 11, 2008, 11:22:33 PM
newguy - are these clinical trials of pentox? who is conducting these trials and how did you hear about it?
[url=http://www.peyroniesforum.net/index.php/topic,893.0.html]My History[/url]

duenorth

hi-- new member as of last week--- i posted on the our histories forum page last week, and have been gearing up for battle, and have a few questions.  any thoughts appreciated. I have in hand the pentox, acetyl l carnitine, l  arginine (as well as other NOS products).  I have on order the VED. I haven't got the aloe vera yet.  Started the pentox today.
           
            As far as the pentox is concerned-- is the standard dose of one 400mg 3 x day what people are taking?

            Similar question about the ALC and L argininine--- how much and how often??

            Where is a good source for high quality aloe vera??

            After looking through previous posts, this is pretty much where i have settled on starting.  As i have no idea what i am doing, i would appreciate any ideas.   thanks

Tim468

My advice is to start slow on the aloe vera. It gave me horrible diarrhea and cramps and I needed to change brands. George may have some specific advice about that.

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

George999

This is what I used to use: Typical Aloe Vera Softgel product.  Note that they almost always use a term like "200:1 extract".  It would give me just a bit of intestinal discomfort starting out.  As Tim says, with aloe you want to take one, wait a day or two and then build up gradually and allow your intestinal tract to adjust.  Same with fiber.  Lots of fiber all of a sudden can give heavy duty cramping.  In both cases much of this has to do with a conflict with intestinal bacteria flora.  Both Aloe Vera and fiber actually cause a change in intestinal bacterial flora over time as some bacteria cannot tolerate Aloe and others, fiber.  These are actually not the best bacteria to have in your gut in the first place so it is really good riddance, but you do have to build up slowly.  The other issue with Aloe is the fact that there are two very different kinds made for different purposes.  The first and most common kind is intended to clean you out.  This is not the effect you want.  It is full of aloe latex and will give you an extreme case of the trots Example).  The other kind is like the one I pointed out above.  In this case most of the latex is filtered out.  I have also used this stronger softgel product Typical Aloe Softgel product in the past without any problem.  The result is a soothing rather than abrasive effect.  Now I have moved on to this "next generation" aloe product that is processed with a freeze drying technique and is highly purified: Typical Freeze Dry Aloe Vera Product.  After taking this product a number of weeks which is significantly more potent than the softgel approach, I have not experienced any intestinal problems yet.  I hope to eventually move on to this product and give it a try: Potent new freeze dry Aloe Vera product.  I have not tried this one yet.  In any case, go easy with it until you find out how you react to it. - George

ComeBacKid

Iceman,

I don't want to come across as ripping urologists and doctors.  However, all the urologists I went to see were totally clueless when it came to knowledge regarding peyronies.  I would say george knew more than all of them combined about possible treatments, when i brought up the ved the resident basically scoffed at me, and laughed me out of the place.  Then the head urologist( who was a heck of a nice guy,) chimed in that the ved will do nothing.  Dr. Lue has some studies that show that PENTOX WORKS!  It is a very safe drug as george and many others have pointed out.  There are some good doctors out there, tim is an example of one, because he continues to learn and engage, and listens to what people have to say.  Some urologists are simply ignorant and only know what they are taught in medical school.  As the times change, they don't.  Plus some doctors are simply obsessed with surgery and making  a quick buck.  I have yet to hear anyones account of a successful peyronies surgery, that left them satisfied.  Another example of the ignorance of some of the american urologists are these doctors who keep pushing infant circumcision to make 300-500 dollars a pop.  I've talked to a few men from around the usa who because they were cut so tightly, their dick couldn't fully become erect and straighten out. 

Frankly put, I've seen more innovative thinking on this forum than all the doctors I went to combined.  If I were you, I'd give pentox a try, unless you have a pre -existing condition.  And no iceman i dont have stock in companies that make pentox  :D

CoMeBaCkId
[url=http://www.peyroniesforum.net/index.php?topic=899.0]My History[/url]

Ptolemy

You guys have motivated me to try Pentox again. It bothered my stomach so I stopped. Possibly the NSAID's I take is part of the problem. This time I've cut caffeine and reduced the NSAID's by 50%. I will take 2 x 400 Pentox daily - 3 will likely be too much. After 1 day this time the only problem is a headache but that may be from caffeine withdrawal.

George, I started Aloe Vera a few weeks back. I've been taking the Gel - 2 ounces twice a day as recommended. How does the Gel compare to the capsules?

George999

Ptolemy, Are you referring to bulk gel or the softgels?  - George