PENTOX 2010 (where to get it and does it work?) - My Experience

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luka-brasi

took pentox for over a year my urologist (female, best dr. i've ever seen so far) is very supporting and said ok, when i gave her the dr. lou study i have found here.

bottom line: it did nothing for me i'm still in pain and my testicles are in pain too, nothing changed.

greetings from germany

luka

p.s.
i did not notice any sideeffects psychically or physically.

newguy

luka-brasi - I'm sorry to hear of your lack of success with pentox. Do you have any idea what the testicular pain is?

George999

I rather think that testicular pain is extremely unusual with Peyronie's, and for a year, virtually unheard of.  But this is just one more testimony as to how this disease presents in so many different ways and defies the medical communities attempts to define it.  As I have stated many times before in my posts, I believe this disease results from multiple factors.  Pentoxifylline addresses some, but not all, of those factors.  In the case of luka-brasi, it obviously isn't addressing enough of those factors to produce relief.  I have faced a similar challenge with neurological pain.  But with persistence, I think I am identifying a combination of different strategies, that, when combined, are providing me significant relief from pain.  I think it is probably the same way with Peyronie's.  For some of us, one strategy, such as Pentox, can halt the disease.  In my case, I am finding that multiple strategies, like the addition of Vitamin D with dosages modulated per blood test results, are proving helpful.  Others are finding that Pentoxifylline + Acetyl L Carnitine are doing the job.  I think with each of us it is kind of an individual thing, although Pentox has certainly proven helpful to more people around here than any other one oral treatment.  Others are finding that combining Pentoxifylline with a non-oral treatment approach like VED or traction to be helpful.  So I think the best strategy is not to give up, but to keep on trying to nail down a regimen that works.  - George

luka-brasi

Quote from: newguy on July 13, 2010, 11:38:18 PM
luka-brasi - I'm sorry to hear of your lack of success with pentox. Do you have any idea what the testicular pain is?

no idea! i even had an varicocele surgery on my left testicle, no result. i feel the pain all the way down the prostata sometimes thinking that it comes from the prostata but
i went through all possible analysis an urologist can do (belive me), all with no result.  the last four year i checked my urologist more often than an average men does in five lifes.

c u

luka

luka-brasi

@george

right now i'm only taking L-arginine and pycnogenol twice a day.
i tried a lot as all of you. i'm getting really tired about this situation and i don't better even think about my future.
i'm 33 my friends have fun with woman or are fathers and i'm scary about being an old and loney and very frustrated old man one day.

ok, enough for the daily whining.
i just wrote a pm to Old Men regarding the VED although i'm scared about this device a bit and the pics of pumped penises that i saw on the internet.

good to have this place, thanks to all the guys that made it possible.

stay thirsty my friends!

luka

ComeBacKid

Has anyone noticed congestion or sinus headaches, or mucus drainage since being on pentox?

Comebackid

Fred22

Pentox Update: Still off the pentox and the "free floating' anxiety has subsided although I still have a fair amount of situational anxiety/depression regarding the lockups described in a previous post, which cause pain and of course more anxiety.  My Psych NP (got to get a rel psychiatrist) upped my Valium to 30 mg and added trazodone which I dropped in less than 2 weeks after reading that one of the side effects was urinary hesitancy, the last thing I need right now. Also hope to go back down on the Valium as I get this thing under control.   When I get with my new therpist I hope to be able to get these anxiety issues under control and possibly start back up on the pentox.  He has a very good reputation as an expert on these conditioned response syndromes.  He works with the local swat team and undercover cops, who I'm sure have many of these types of issues.  My friend who's a therapist says I've developed a Pavlovian type response to these urinary lockups...fear that it will happen and cause pain, therefore it does...self fullfilling prophecy. The only thing that's holding me back is the shy bladder syndrome which has turned me into a virtual recluse.  For those who don't have this condition many think, "If you have to pee, you'll eventually pee if you have to go badly enough", but you can feel like you're about to piss your pants, go to a strange restroom and the urge disappears.  People have literally held it for 48 hours. I just hope I can get it together give the pentox another try.  Let me state also that I'm not convinced 100% that it was the pentox which caused this episode of anxiety in the first place.  But it was a strange concidence of events.


Fred

 

Skjaldborg

Fred22,

The urinary anxiety that you mentioned is actually pretty common among men to one degree or another. I used to get the old "shy kidney" on occasion in restrooms that offered little privacy (like when the urinals are really close together). I remember one time in college, I was 6 beers in at a bar and couldn't get a drop going until I switched to the stall. It was weird. Luckily, this went away as I got older.

Anyway, you might want to try finding a therapist who deals with this on a regular basis. They might be able to help you through this with techniques such as guided imagery, which has apparently been useful in treating PTSD and such like. You might also want to check with your doctor if the meds you are on can cause this. Worth a shot.

In the short term, is it possible to have any positive urinary experiences? Maybe go out in the country and pee in the woods on a star filled night? Maybe enjoy a nice whiz in your own bathroom when no one else is around? How about peeing in the shower? I am only half-joking about these...if you can trick your mind into enjoying it then maybe the fear aspect will fade away.

/sorry it's a bit off topic, just trying to address the previous post

-Skjald

Fred22

Quote from: Skjaldborg on July 15, 2010, 07:17:44 PM
Fred22,

The urinary anxiety that you mentioned is actually pretty common among men to one degree or another. I used to get the old "shy kidney" on occasion in restrooms that offered little privacy (like when the urinals are really close together). I remember one time in college, I was 6 beers in at a bar and couldn't get a drop going until I switched to the stall. It was weird. Luckily, this went away as I got older.

Anyway, you might want to try finding a therapist who deals with this on a regular basis. They might be able to help you through this with techniques such as guided imagery, which has apparently been useful in treating PTSD and such like. You might also want to check with your doctor if the meds you are on can cause this. Worth a shot.

In the short term, is it possible to have any positive urinary experiences? Maybe go out in the country and pee in the woods on a star filled night? Maybe enjoy a nice whiz in your own bathroom when no one else is around? How about peeing in the shower? I am only half-joking about these...if you can trick your mind into enjoying it then maybe the fear aspect will fade away.

/sorry it's a bit off topic, just trying to address the previous post

-Skjald

I've been referred to an excellent therapist as I mentioned in my post, but the very thing that needs treatment (shy bladder) is keeping me from going through with it.  The treatment of choice is graduated exposure therapy...starting with a "safe" restroom and moving gradually to more challenging situations.  I do pee in the shower and even go out in my back yard at night and enjoy a nice pee under the stars.  Hopefully I'll get it together enough to see this therapist.  He's an expert at these conditioning type things as I mentioned.  Thanks for the support.

Fred

George999

Quote from: PubMed

CNS Neurosci Ther. 2009 Summer;15(2):128-33.
Omega-3 fatty acids in depression: a review of three studies.

Osher Y, Belmaker RH.

Ministry of Health Beer Sheva Mental Health Center, Faculty of Health Sciences, Ben Gurion University of the Negev, Beer Sheva, Israel. yamy@bgu.ac.il
Abstract

We review three studies of omega-3 fatty acids in the treatment of depression that were carried out by our research group at the Beer Sheva Mental Health Center. The first study examined eicosapentaenoic acid (EPA) versus placebo as an adjunct to antidepressant treatment in 20 unipolar patients with recurrent major depression. The second study used omega-3 fatty acids in childhood major depression; 28 children aged 6-12 were randomized to omega-3 fatty acids or placebo as pharmacologic monotherapy. The third study was an open-label add-on trial of EPA in bipolar depression. Twelve bipolar outpatients with depressive symptoms were treated with 1.5-2.0 g/day of EPA for up to 6 months. In the adult unipolar depression study, highly significant benefits were found by week 3 of EPA treatment compared with placebo. In the child study, an analysis of variance (ANOVA) showed highly significant effects of omega-3 on each of the three rating scales. In the bipolar depression study, 8 of the 10 patients who completed at least 1 month of follow-up achieved a 50% or greater reduction in Hamilton depression (Ham-D) scores within 1 month. No significant side effects were reported in any of the studies. Omega-3 fatty acids were shown to be more effective than placebo for depression in both adults and children in small controlled studies and in an open study of bipolar depression. (This review discusses three studies, all from our group, completed before the clinical trial registry was initiated.)

PMID: 19499625 [PubMed - indexed for MEDLINE]



Fred22

Quote from: George999 on July 15, 2010, 09:27:58 PM
Quote from: PubMed

CNS Neurosci Ther. 2009 Summer;15(2):128-33.
Omega-3 fatty acids in depression: a review of three studies.

Osher Y, Belmaker RH.

Ministry of Health Beer Sheva Mental Health Center, Faculty of Health Sciences, Ben Gurion University of the Negev, Beer Sheva, Israel. yamy@bgu.ac.il
Abstract

We review three studies of omega-3 fatty acids in the treatment of depression that were carried out by our research group at the Beer Sheva Mental Health Center. The first study examined eicosapentaenoic acid (EPA) versus placebo as an adjunct to antidepressant treatment in 20 unipolar patients with recurrent major depression. The second study used omega-3 fatty acids in childhood major depression; 28 children aged 6-12 were randomized to omega-3 fatty acids or placebo as pharmacologic monotherapy. The third study was an open-label add-on trial of EPA in bipolar depression. Twelve bipolar outpatients with depressive symptoms were treated with 1.5-2.0 g/day of EPA for up to 6 months. In the adult unipolar depression study, highly significant benefits were found by week 3 of EPA treatment compared with placebo. In the child study, an analysis of variance (ANOVA) showed highly significant effects of omega-3 on each of the three rating scales. In the bipolar depression study, 8 of the 10 patients who completed at least 1 month of follow-up achieved a 50% or greater reduction in Hamilton depression (Ham-D) scores within 1 month. No significant side effects were reported in any of the studies. Omega-3 fatty acids were shown to be more effective than placebo for depression in both adults and children in small controlled studies and in an open study of bipolar depression. (This review discusses three studies, all from our group, completed before the clinical trial registry was initiated.)


PMID: 19499625 [PubMed - indexed for MEDLINE]



George,

What do you know about the NatureMade fish oil?  On the label it says USP verified (whatever that means).  It purportedly is made from anchovy and sardine; also contains soy; Omega 3 fatty acids (EPA DHA and "other" 720 mg.)  2 softgels provide 1200 mg. fish oil.  I'm a little leary as you find this brand at Walmart, Kroger, etc.  Do you have an opinion Re the NatureMade brand?

Fred22

Quote from: Fred22 on July 16, 2010, 12:24:56 PM
Quote from: George999 on July 15, 2010, 09:27:58 PM
Quote from: PubMed

CNS Neurosci Ther. 2009 Summer;15(2):128-33.
Omega-3 fatty acids in depression: a review of three studies.

Osher Y, Belmaker RH.

Ministry of Health Beer Sheva Mental Health Center, Faculty of Health Sciences, Ben Gurion University of the Negev, Beer Sheva, Israel. yamy@bgu.ac.il
Abstract

We review three studies of omega-3 fatty acids in the treatment of depression that were carried out by our research group at the Beer Sheva Mental Health Center. The first study examined eicosapentaenoic acid (EPA) versus placebo as an adjunct to antidepressant treatment in 20 unipolar patients with recurrent major depression. The second study used omega-3 fatty acids in childhood major depression; 28 children aged 6-12 were randomized to omega-3 fatty acids or placebo as pharmacologic monotherapy. The third study was an open-label add-on trial of EPA in bipolar depression. Twelve bipolar outpatients with depressive symptoms were treated with 1.5-2.0 g/day of EPA for up to 6 months. In the adult unipolar depression study, highly significant benefits were found by week 3 of EPA treatment compared with placebo. In the child study, an analysis of variance (ANOVA) showed highly significant effects of omega-3 on each of the three rating scales. In the bipolar depression study, 8 of the 10 patients who completed at least 1 month of follow-up achieved a 50% or greater reduction in Hamilton depression (Ham-D) scores within 1 month. No significant side effects were reported in any of the studies. Omega-3 fatty acids were shown to be more effective than placebo for depression in both adults and children in small controlled studies and in an open study of bipolar depression. (This review discusses three studies, all from our group, completed before the clinical trial registry was initiated.)


PMID: 19499625 [PubMed - indexed for MEDLINE]




George,

What do you know about the NatureMade fish oil?  On the label it says USP verified (whatever that means).  It purportedly is made from anchovy and sardine; also contains soy; Omega 3 fatty acids (EPA DHA and "other" 720 mg.)  2 softgels provide 1200 mg. fish oil.  I'm a little skeptical as you find this brand at Walmart, Kroger, etc.  Do you have an opinion Re the NatureMade brand? I'm also taking several tbsps. of ground flaxseed mixed with yogurt, on salads, etc. which I understand contains Omega 3 and 6.



Fred22


Please disregard this one. I accidently made a double post.

Old Man

Fred22:

Since you are the author of the duplicate post, you can remove it by clicking on the remove link in your copy of the post on your computer. Suggest that you modify your post where you stated you duplicated it with an edit note that the post, by number, you remove is annotated that is was deleted by you as the author.

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

OM - There are NO remove links for most of us.  Hawk disabled them a long time ago to keep people from maliciously corrupting threads by leading a conversation and then removing all of their posts, thus rendering the thread meaningless.  Some of you may still be able to see the remove links, but most of us can't.  - George

George999

Fred,  The Nature Made brand looks fine to me.  I do not see where it has been tested for dioxins, but it looks clean for everything else.  - George

Fred22

Quote from: Old Man on July 16, 2010, 04:08:12 PM
Fred22:

Since you are the author of the duplicate post, you can remove it by clicking on the remove link in your copy of the post on your computer. Suggest that you modify your post where you stated you duplicated it with an edit note that the post, by number, you remove is annotated that is was deleted by you as the author.

Old Man

Sorry Old Man, don't understand.  Please explain again as I'd like to know how to remove a post. Thanks.

Fred

Fred22

Old Man,  I just read George's post above your's which explains the issue.  Sorry for the duplicate post.  I'll be more careful.

Fred

Fred22

Quote from: George999 on July 16, 2010, 07:00:14 PM
Fred,  The Nature Made brand looks fine to me.  I do not see where it has been tested for dioxins, but it looks clean for everything else.  - George

George,  Would you be concerned about this report RE NatureMade fish oil?

A California environmental group is suing several producers of popular fish oil products for excessive contamination in their fish oils. The group, Mateel Environmental Justice Foundation, found that fish oil supplements from CVS Pharmacy, Nature Made, Rite Aid, GNC, Solgar, Twinlab, Now Health, Omega Protein and Pharmavite contained excessive levels of PCBs. California law requires that consumers not be exposed to more than 90 nanograms of PCBs, but some of the products sampled contained up to 850 nanograms, nearly 10 times the legal amount!

This recent news, along with a recent UK study by the Food Standards agency (the UK equivalent of the FDA) that found many brands contained excess levels of dioxin, underscores the importance of only buying fish oil products that are certified toxin free by the International Fish Oil Standards program. The IFOS program is a voluntary third-party testing organization that tests fish oil along the strictest standards in the world.

Here are IFOS' testing criteria for a product to receive 5-star certification:

Passes All CRN/WHO Testing Categories
PCB Levels Less than 50% of CRN Standard
60% Omega-3 Concentration or Higher
Oxidation Levels Less than 75% of CRN Standard
Dioxin Levels Less Than 50% of WHO Standard
CRN is the Council for Responsible Nutrition, and WHO is the World Health Organization. The IFOS program was created in response to the lack of regulation of fish oil products around the world. While the CRN limits PCB levels to 90 part-per-billion, many IFOS certified fish oils have close to 1 part per billion!

While other countries like Canada and Norway strictly regulate their fish oil supplements, the United States is much more lax in their regulations. As such the IFOS program is most important for consumers in the US.


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George999

Fred,  I hadn't seen that.  It would definitely cause me to avoid the Nature Made product.  I also find it interesting that Now Foods apparently has the same problem.  My naturopath recommends Nordic Naturals.  I am currently using the Life Extension product.  I guess the fact the Nature Made product was not tested for dioxins should have been a red flag.  For sure Nordic Naturals should be clean.  And then there is krill oil.  - George

Fred22

Quote from: George999 on July 19, 2010, 09:21:11 PM
Fred,  I hadn't seen that.  It would definitely cause me to avoid the Nature Made product.  I also find it interesting that Now Foods apparently has the same problem.  My naturopath recommends Nordic Naturals.  I am currently using the Life Extension product.  I guess the fact the Nature Made product was not tested for dioxins should have been a red flag.  For sure Nordic Naturals should be clean.  And then there is krill oil.  - George

How about this new prescription fish oil, Lovaza?  I could probably get it with an insurance copay.  Know anything about this one?

Fred

George999

Quote from: Fred22 on July 20, 2010, 08:24:43 PM
Quote from: George999 on July 19, 2010, 09:21:11 PM
Fred,  I hadn't seen that.  It would definitely cause me to avoid the Nature Made product.  I also find it interesting that Now Foods apparently has the same problem.  My naturopath recommends Nordic Naturals.  I am currently using the Life Extension product.  I guess the fact the Nature Made product was not tested for dioxins should have been a red flag.  For sure Nordic Naturals should be clean.  And then there is krill oil.  - George

How about this new prescription fish oil, Lovaza?  I could probably get it with an insurance copay.  Know anything about this one?

Fred

Its VERY overpriced.  There are some really good brands out there like Nordic Naturals that should be OK.  And the reality is that they have done studies with these fish oils that demonstrate that, even with the contaminants, the benefits far outweigh the risks.  The reality is, that in spite of everything, they extend life spans.  That, of course, doesn't mean that I think we should be consuming sups we know are contaminated.  It does mean that I think we can get over exercised about it to the point that we do nothing and there is a price to pay for that as well.  I might also add regarding Lovaza, that PRESCRIPTION meds have been known to be contaminated as well.  So there are no real guarantees.

Fred22

Quote from: George999 on July 20, 2010, 08:51:07 PM
Quote from: Fred22 on July 20, 2010, 08:24:43 PM
Quote from: George999 on July 19, 2010, 09:21:11 PM
Fred,  I hadn't seen that.  It would definitely cause me to avoid the Nature Made product.  I also find it interesting that Now Foods apparently has the same problem.  My naturopath recommends Nordic Naturals.  I am currently using the Life Extension product.  I guess the fact the Nature Made product was not tested for dioxins should have been a red flag.  For sure Nordic Naturals should be clean.  And then there is krill oil.  - George

How about this new prescription fish oil, Lovaza?  I could probably get it with an insurance copay.  Know anything about this one?

Fred

Its VERY overpriced.  There are some really good brands out there like Nordic Naturals that should be OK.  And the reality is that they have done studies with these fish oils that demonstrate that, even with the contaminants, the benefits far outweigh the risks.  The reality is, that in spite of everything, they extend life spans.  That, of course, doesn't mean that I think we should be consuming sups we know are contaminated.  It does mean that I think we can get over exercised about it to the point that we do nothing and there is a price to pay for that as well.  I might also add regarding Lovaza, that PRESCRIPTION meds have been known to be contaminated as well.  So there are no real guarantees.

Is the Nordic Naturals the one you're taking?

George999

Nope.  I have joined the Life Extension Foundation and am thus using a lot of their products now.  I am currently using their fish oil (4 per day) plus a bit of fish oil from Natural Factors (1 per day).  I am planning to start using fish oil from iOmega in place of the Natural Factors, but, in any case plan to continue using the Life Extension product.  I kind of figure that if I can't trust them, I'm not sure who I can trust.  - George

Fred22

Quote from: George999 on July 21, 2010, 07:24:46 PM
Nope.  I have joined the Life Extension Foundation and am thus using a lot of their products now.  I am currently using their fish oil (4 per day) plus a bit of fish oil from Natural Factors (1 per day).  I am planning to start using fish oil from iOmega in place of the Natural Factors, but, in any case plan to continue using the Life Extension product.  I kind of figure that if I can't trust them, I'm not sure who I can trust.  - George

George,

I checked out the Life Extension foundation website.  What is it that makes you trust this organization any more than many others of the same type?  I'm definitely interested in the concept and would love to have access to a source of this kind that is 100% trustworthy.

Fred

George999

I'm not sure there is anything or anybody in existence that is 100% trustworthy, but the fact that LEF is a non-profit is, for me, a strong point in their favor.  If you know of similar non-profit health advancement organizations, they may be just as reliable.  Certainly any institution can make mistakes, but all too many "mistakes" go unaddressed because addressing them would conflict with an overriding profit motive.  As I have said before, I do think there are exceptions.  Nordic Naturals has a strong reputation for producing clean fish oil products, and there are likely others.  I use Consumer Lab as well (another non-profit), but they are not yet testing for PCBs in fish oil products.  They are beginning to test for dioxins.  They have a bit of catching up to do.  Another issue of course is how many different things should we be testing for?  There are so many new pollutants being introduced all the time that it boggles the mind.  Somehow we all manage to survive (or mostly so).  Isn't that amazing.  - George

slowandsteady

Quote from: George999 on July 22, 2010, 07:02:04 PMI use Consumer Lab as well (another non-profit), but they are not yet testing for PCBs in fish oil products.
I'm a bit leery of their business model. My understanding is that, for a "membership fee", if they find any issue with your product they will hold off on publishing their finding until you fix it. If you don't pay them, they publish. They also accept ad revenue from manufacturers they review. Can you imagine if Consumer reports did that?

George999

Quote from: slowandsteady on July 25, 2010, 02:09:08 AM
Quote from: George999 on July 22, 2010, 07:02:04 PMI use Consumer Lab as well (another non-profit), but they are not yet testing for PCBs in fish oil products.
I'm a bit leery of their business model. My understanding is that, for a "membership fee", if they find any issue with your product they will hold off on publishing their finding until you fix it. If you don't pay them, they publish. They also accept ad revenue from manufacturers they review. Can you imagine if Consumer reports did that?

I KNEW somebody would come up with that issue.  I would indeed agree with the point IF it were not for the fact that testing these supplements is an extremely expensive endeavor and you won't generate enough revenue to do that just through consumer subscriptions.  A lot of what Consumer Reports does is really customer satisfaction stuff.  They just recycle a tremendous amount of "consumer ratings" and this generates them a huge consumer base, via which they can do some of the more expensive actual product testing.  And I would not be surprised if there are manufacturers who actually donate their products to CR as well in order to have them tested and listed.  I would certainly agree that the squeaky clean model of CR is preferable to CL's.  BUT, show me ANY other organization without these conflicts of interest that is routinely testing sups and providing data and I will join up in a second.  But I don't think you can, so CL is the best source out there right now and is, in my opinion, doing a pretty good job with what they have to work with.  Does anybody really trust the FDA?  Look at all the conflict of interests in their neck of the woods.  Personally, I have full confidence in CL's ratings.  The problem is that they are nowhere near concise.  The fish oil PCB issue is just one example.  NOBODY in the fish oil industry is openly testing for PCBs.  But some ARE openly testing for dioxins.  A product that is clean of dioxins is much more likely to be clean of PCBs than a product that is not tested for dioxins.  As I also mentioned, there are alternatives like krill oil, flax oil, etc.  But they all have their own issues.  And then, I repeat, you are up against the fact that there is research out there that shows that people who use moderate amounts of CONTAMINATED fish oil are better off health wise than people who don't.  There are no easy choices.  So knock CL all you want, but show me someone who's doing a better job and I will be impressed with that.  - George

Fred22

[[/quote]

As I also mentioned, there are alternatives like krill oil, flax oil, etc.  But they all have their own issues.    - George
[/quote]

I've been using ground flaxseed lately...a tbsp in my non=fat plain yogurt, in oatmeal, etc.  I'm working my way up to 4 Tbsps. a day.  Just ordered a fresh supply from Puritan's Pride.  What are the issues you refer to RE flax?
Fred

George999

Quote from: Fred22 on July 25, 2010, 03:39:53 PM
Quote from: George999 on July 25, 2010, 11:41:10 AM
As I also mentioned, there are alternatives like krill oil, flax oil, etc.  But they all have their own issues.    - George

I've been using ground flaxseed lately...a tbsp in my non=fat plain yogurt, in oatmeal, etc.  I'm working my way up to 4 Tbsps. a day.  Just ordered a fresh supply from Puritan's Pride.  What are the issues you refer to RE flax?
Fred

Flax is a harvested grain product and as such can potentially contain pesticide residues.  Products like flax can also contain heavy metals depending on where they are grown and how they are processed.  This problem will be much less so with ground flaxseed than with flax oil due to the fact that the flaxseed is not highly concentrated as are the oils.  Not a reason not to use it, just that it has its own problems and I would hesitate to say that it is inherently "safer" than fish oil.  And you would have to be using a lot of flaxseed to get an appreciable amount of omega 3s.  - George

Tim468

CR does not ever take donated material to test. They purchase products always, to my knowledge, to avoid any conflicts of interest.

I have read a few larger studies that demonstrate that fish is better for you than fish oil. Cannot recall the details now (ie did they really use adequate dosing of fish oil). One thought is that small fish do not bio-concentrate toxins like PCBs, especially compared to bottom fish like Flounder. So eating sardines is likely to be better than eating large fish.

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

George999

Quote from: Tim468 on July 26, 2010, 12:53:20 PM
CR does not ever take donated material to test. They purchase products always, to my knowledge, to avoid any conflicts of interest.

I have read a few larger studies that demonstrate that fish is better for you than fish oil. Cannot recall the details now (ie did they really use adequate dosing of fish oil). One thought is that small fish do not bio-concentrate toxins like PCBs, especially compared to bottom fish like Flounder. So eating sardines is likely to be better than eating large fish.

Tim

Tim,  Good points.  One thing that helps is to look at the label to see what type of fish the fish oil comes from.  Naturally low levels of common toxins is a point in favor of krill oil.  The challenge is to get therapeutic levels of omega 3s WITHOUT the unwanted fat and toxins.  As for CR, I would continue to assert that none of these organizations is infallible.  A case in point for me would be the whole iPhone flap.  CR made a big deal about downgrading ratings on the iPhone due to the antenna issue.  Now all sorts of evidence is indicating that the other phones have exactly the same issues.  As much as I value CR and I am an off and on member of CR, I sometimes wonder how they come up with some of their conclusions, although usually they are pretty close and their ratings are helpful.  But the stuff they are doing is quite different than what CL is doing and they have a much larger base of support.  - George

Fred22

In Dr. Andrew Weil's book "Spontaneous Healing" he recommends taking no fish oil at at all due to the contamination issue.  He recommends having salmon, mackerel or sardine 2 to 3 times a week.  Don't know how credible a source he is, but I've read quite a bit of his material that makes a lot of sense.  Also used some of his suggestions to good advantage.

Also RE the pentox.  I still have a 2 month supply just sitting here and I'd really like to give it another try.  However, I'm still worried about the anxiety issue.  The anxiety subsided when I stopped the pentox, but I also started taking a lot more Valium at the same time.  So is it the Valium or stopping the pentox that has lessened my anxiety?  Of course, I still have some anxiety related to Peyronie's and this urinary problem which is still with me.  If I'm under pressure to pee (waiting for student to show up, time constraints, or even randomly for some unknown reason etc.), I'll  still sometimes get the shakes, stream weakens or stops which leads to more pain>anxiety>etc.  I still haven't gotten up the courage to make an appointment with the therapist because of this problem....  having a painful lockup before I go or sitting in his office with a bursting bladder and not being able to pee.  I even paid a visit to his office and checked out the bathroom.  I know the receptionist probably thought I was crazy, but of course they're in the business of dealing with "crazy" people.  

Fred  

George999

The problem is that toxics are everywhere.  Fish, even the shorter living fish, has toxic stuff as well.  And if you eat a lot of it, you get a lot of toxics.  Fish oils, unlike fish, usually undergo a process to strip them of toxins.  In any case, fish or fish oil is not likely to help with anxiety.  It does, however, help with depression.  As for the issue of toxics, there has just been a discovery that the stuff they put in antibacterial soap is absorbed by the body and messes with hormones.  Apparently the industry has been aware of this problem for some time and the FDA has done nothing to deal with it.  Also, we now are learning that simple cash register receipts are loaded with BPA which is also absorbed through the skin and messes with hormones.  And this is not even to mention whats in the water and the food.  Ever wonder why people are having a problem keeping their sanity?  Look no further than all the toxic chemicals one is exposed to at every turn in life.  But these things are not important.  Jobs and the economy are what people care about and regulations just get in the way.  Oh well.  - George

BrooksBro

I have been struggling with sleeping long enough while taking Pentox.  Some suggested earlier in the evening.  I have been trying to do that @ 6 pm, with a small snack, like a granola bar.  I have not seen a significant improvement in how long I sleep at night.  

A trial of Rx 5 & 10 mg Ambien was no better than OTC Benadryl.  I tried a combination of melatonin and benadryl, which only gave me a headache the next morning.

I have been having surprising success with Calms Forte, a product containing many different flower extracts, such as Chamomile.  I found it at GNC; 100 tablets @ around $5-6.  3 tablets before bed (IMMEDIATELY before bed for me!) have been more effective than anything else I've tried.  Now, it is rare that even a night time erection wakes me up.  

The label says Calms Forte can be use in single tablet doses throughout the day for anxiety.

I suggested this product to a friend who had been having trouble sleeping.  She took two while she was still running errands.  It was a very good thing she was not driving!   The next morning, she had great difficulty waking up for the day, and was late for work.

George999

Quote from: BrooksBro on July 30, 2010, 05:28:01 AMI have been having surprising success with Calms Forte, a product containing many different flower extracts, such as Chamomile.

I have had similar success with these types of products and highly recommend them.  Another good one is "Valerian Nighttime" by Nature's Way.  It is actually manufactured by a German Pharmaceutical company and is very good for relieving anxiety as well.  - George

fubar

George999:
I bought Valerian brand (Oregon's wild harvest) , do you know if it is a reliable brand?I have my entire life struggled to fall a sleep. I am in great need of away to fall asleep. I would rather find a
natural way than a pharmaceutical.

Fubar:  

George999

Sorry, I am not familiar with that one.  I would suggest to try it and see how it works out.  Personally I found the Nature's Way product worked best for me so you might want to give that a try when you finish the Wild Harvest, or even perhaps if the Wild Harvest doesn't do the job.  - George

Fred22

Quote from: George999 on July 29, 2010, 05:39:19 PM
The problem is that toxics are everywhere.  Fish, even the shorter living fish, has toxic stuff as well.  And if you eat a lot of it, you get a lot of toxics.  Fish oils, unlike fish, usually undergo a process to strip them of toxins.  In any case, fish or fish oil is not likely to help with anxiety.  It does, however, help with depression.  As for the issue of toxics, there has just been a discovery that the stuff they put in antibacterial soap is absorbed by the body and messes with hormones.  Apparently the industry has been aware of this problem for some time and the FDA has done nothing to deal with it.  Also, we now are learning that simple cash register receipts are loaded with BPA which is also absorbed through the skin and messes with hormones.  And this is not even to mention whats in the water and the food.  Ever wonder why people are having a problem keeping their sanity?  Look no further than all the toxic chemicals one is exposed to at every turn in life.  But these things are not important.  Jobs and the economy are what people care about and regulations just get in the way.  Oh well.  - George

That's why I didn't see the point that Dr. Weil was trying to make when he suggested eating salmon, mackerel and sardines instead of taking fish oil.  If the oil that is extracted from the fish is polluted then the fish are polluted as well...unless I'm missing something.

George999

I just want to say that I have more than a little respect for Dr Weil, but I am afraid that I disagree with him on this point.  I do think that if we use fish oil regularly, we have to be careful to get the cleanest possible fish oil.  It IS possible to remove most of the pollutants in the refining process.  - George

Fred22

Pentox Update:  Still haven't tried going back on the pentox.  I'm currently taking 2g acetyl l carnitine, but no change so far.  Some days the pain is pretty bad.  Still getting anxious at times and having stream stop which causes more pain. It's gotten to the point that this happens mostly at night now, just before I go to bed.  I get anxious about that final pee and it's a self fulfilling prophecy...lockup and stream stops.  I usually can wait a few minutes and void, but the damage is already done then and I'm in pain.  The stream stopping is, I feel sure, caused by the paruresis, but the pain....don't know if it's from the Peyronie's or from the external sphincter suddenly slamming down on the urethra.  Whatever it is it's frustrating (and painful) as hell!

Fred


Briden


Hello all,

This evening, with fingers crossed for a good experience this time around I have begun taking Pentox ...

My complications in the past were very severe anxiety and depression along with very strange suicidal thought processes. My doctor and I are unsure if these complications were caused by Pentox.  I am bi-polar. The first two stints with Pentox were a year ago...I was not stable with my bi-polar condition then...it has been over a year since I took pentox.  Now my bi-polar is at a state of balance. My doctor and I are going to try Pentox for a third and final time.

I am starting with (1) pill at dinner for a week...so far (as expected) I am experiencing some jittery feelins...like I have had a bunch of caffenine...I have had a few flush moments with dizzyness...and I seem very restless...It is 2:30am and I dont see sleep in sight....all of this was expected..

Hoping I can take tyhe one thing that seems to be the most respected spec of hope we have...

-Briden

Fred22

Quote from: Briden on August 21, 2010, 05:22:25 AM

Hello all,

This evening, with fingers crossed for a good experience this time around I have begun taking Pentox ...

My complications in the past were very severe anxiety and depression along with very strange suicidal thought processes. My doctor and I are unsure if these complications were caused by Pentox.  I am bi-polar. The first two stints with Pentox were a year ago...I was not stable with my bi-polar condition then...it has been over a year since I took pentox.  Now my bi-polar is at a state of balance. My doctor and I are going to try Pentox for a third and final time.

I am starting with (1) pill at dinner for a week...so far (as expected) I am experiencing some jittery feelins...like I have had a bunch of caffenine...I have had a few flush moments with dizzyness...and I seem very restless...It is 2:30am and I dont see sleep in sight....all of this was expected..

Hoping I can take tyhe one thing that seems to be the most respected spec of hope we have...

-Briden

Good luck, Briden.  Please keep us posted on the results.

Fred

Fred22

I got a call from Dr. Brian Christine yesterday.  He's the surgeon from Urology Centers of Alabama.  We were discussing options regarding my pain.  Of course, he said it was difficult to make a diagnosis on the phone, but that having pain for over 4 years was very unusual.  He also said if I had surgery, It probably would not resolve the pain issue, (the same thing Dr. Milam said), and could possibly make it worse.  He then said thay had been seeing positive results with Trental (pentox).  When I told him of my experience with pentox and that it had caused my anxiety level to spike, he seemed to think my best bet is to see a neurologist and then a pain management doctor.  He said my pain could be caused by nerve involvement with the plaques or that there could possibly still be inflammation going on in my case, but that I should be prepared for the fact that the pain may just be something I'll have to live with.  A very depressing thought.
Fred

George999

Fred, You might want to look over the CoQ10 thread.  As newguy correctly notes, its from a bit out of left field, but who knows?  You wouldn't be losing a whole lot to take a crack at it while you are waiting, and see what happens.  - George

Fred22

Quote from: George999 on August 27, 2010, 12:15:27 PM
Fred, You might want to look over the CoQ10 thread.  As newguy correctly notes, its from a bit out of left field, but who knows?  You wouldn't be losing a whole lot to take a crack at it while you are waiting, and see what happens.  - George

I think I will get some CoQ10.  I took it for a while some years back for symptoms of mitral valve prolapse (didn't seem to help this condition which comes and goes from time to time).  I am taking 2g ALC daily.  I had taken it for about a month when I started taking the pentox in June.  I stopped the ALC at that time so if my symptoms improved, I'd know it was the pentox that was helping.  After it turned out I was unable to to take the pentox because of anxiety issues, I resumed the the ALC.  I have about a 3 month supply.  Should 3 months be a long enough trial to se if the ALC is going to help?
Fred

George999

Quote from: Fred22 on August 27, 2010, 02:01:58 PM
I have about a 3 month supply.  Should 3 months be a long enough trial to se if the ALC is going to help?

I can tell you how I look at it.  I don't really care WHAT is helping my problem, ONLY that it is getting help.  So my take would be to continue the ALC and add the CoQ10 at a level used in the Iranian study.  If you are tolerating the ALC OK, there is really no reason to quite.  And who knows?  Perhaps the CoQ10 doesn't help you, but the combination of ALC AND CoQ10 might.  I know that doctors don't look at things that way.  They like everything to be all tidy.  But the reality is that there is a study out there that shows a couple of grams of ALC a day helped some people.  Thats good enough for me, I would keep taking it based on that.  But now we also have a study showing benefit from CoQ10.  So do that as well.  I really doubt that ALC will counter the benefit of CoQ10 or the other way around.  More likely they would be synergistic or at least non-interfering.

newguy

I think that's a healthy attitude George. There's hardly a deluge of viable treatment options, and as there may well be various routes to being burdened with peyronie's disease, I think it makes sense to try to work with what information with have, and share experiences as to what we think is useful for us. It sometimes seems like we are our own (mad) scientists, but much of what we do end up being studied more extensively years after it's been adopted by the community (traction, VED, pentox), so it makes sense to try to pre-empt that process at times.  

Fred22

Right now my main objective is to resolve the pain issue.  I could then resume my VED therapy, etc.  Since I'm not able to take pentox (although I may give it another try at some point), I need to find something that can help me with the pain besides nsaids, etc.  I've been in touch with Dr. Milam at Vanderbilt and Dr. Christine at Urology Centers of Alabama and both agree that my case is very unusual (in that I've experienced pain for over 4 years) and that I should probably go to a neurologist then a pain management doctor.  Just wondering if there are any suggestions here regarding the pain issue that we haven't already discussed.
Fred

Farinthesouth

Quote from: Fred22 on August 30, 2010, 12:23:08 PM
Right now my main objective is to resolve the pain issue.  I could then resume my VED therapy, etc.  Since I'm not able to take pentox (although I may give it another try at some point), I need to find something that can help me with the pain besides nsaids, etc.  I've been in touch with Dr. Milam at Vanderbilt and Dr. Christine at Urology Centers of Alabama and both agree that my case is very unusual (in that I've experienced pain for over 4 years) and that I should probably go to a neurologist then a pain management doctor.  Just wondering if there are any suggestions here regarding the pain issue that we haven't already discussed.
Fred
I have been in pain  ( Flaccid) since november 2009;my Uro says that plaque may be compressing dorsal nerve. Sonogram showed a 2mm lession.
I have tried Ultrasound and Laser therapies with no results so far( 24 sessions) It´s very frustrating.