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

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Hawk

Quote from: slowandsteady on November 20, 2008, 12:49:07 AM
On the same note, anyone try Fibrozyme? Both it and WobenzymN are made by the same company.

I've tried serrapeptase and nattikinase separately (Doctor's Best brand), but didn't notice anything immediately.

If you search those words with the forum search feature you will see they have been discussed.
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

bent70

I asked this question earlier but it may have been missed. Is anyone taking ALC whilst on mediacation for hypothyroidism? A lot of the sites that sell ALC state this warning:

"Carnitine is thought to affect thyroid hormone by blocking its action in cells. This suggests a potential concern: Carnitine might be harmful for people who have low or borderline thyroid levels to begin with."

I had been hoping to take ALC - but if the conflict is a problem I'll stick with L-Arginine.

Anyone with any experience?


Hawk

Bent,

To say every body is different is an understatement.  I see it all the time,.  That is why we get different diseases.  Since body is different and reacts differently to foods, allergens, and drugs,I think the warning you mention should serve as your warning.  Every case of hypothyroidism is certainly somewhat individual.  Even if a member or two with those conditions took ALC with no problems, that would not address what will result with you nor will it void the warning.
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

I just discovered a safety problem with using quartz halogen lamps.   :(  There are warnings on the net about the amount of UVC they put out.  Though it is not very much, solar UVC is filtered out 100% by the earths atmosphere and it is potentially dangerous.  Clear glass filters out virtually all of the UVC while passing most of the UVB, so I will no longer be using my lamp without its face glass.  My apologies to anyone who has purchased one of these lamps, but I was unaware of this information and now that I am, I am posting a warning.  - George

slowandsteady

An earlier posting dealt with a possible response of one person's Peyronie's to high dose vitamin K. The amazon.com poster in particular used the synthetic version of K1 called phytonadione. Some on this board thought the poster was suspect. I don't necessarily agree.

I find the hypothesis that vitamin K might be beneficial to Peyronie's plausible. Besides its role in blood clotting, vitamin K plays a role of shepherding calcium where it needs to go (bone) and keeping it away from where it shouldn't be (soft tissue). The drug verapamil is a calcium channel blocker.

I'd like to give high dose vitamin K a shot. The Japanese use high dose vitamin K for osteoporosis, so it does have a track record. FWIW, people with cystic fibrosis also seem to be deficient in vitamin K.

I'm surprised that the synthetic version of K1 (assuming the post was made in good faith) beat out the natural version. I'll try that first, but I will also try the MK-4 version of K2. K2 also has a MK-7 version (some background on these two forms, but keep in mind they sell the MK-7 form) which has a much longer half life (like 100 hours vs 5 hours for MK-4). I am a little hesitant to take large doses of a vitamin with a very long half life.

slowandsteady

George999

Regarding Vitamin K, I believe that anyone who is taking either Vitamin E or Vitamin D should be taking Vitamin K.  Vitamin K prevents bleeding AND prevents calcium accumulation in soft tissues.  Both of these are concerns for people dealing with Peyronies.  I have taken Vitamin K off and on for some time and continue to take it.  The only major risk that it seems to present if for those people taking blood thinners for any medical reason.  They should NOT take Vitamin K without getting a go ahead from their physician since it can counter the effect of their medication and result in serious consequences.   - George

George999

There is currently available in most of the US a very affordable test for Vitamin D levels.  The cost is reported to be between $60 and $120.  The lab that does these tests with the most economic method is Quest Diagnostics.  They have a page dedicated to explaining Vitamin D testing along with a patient FAQ.  I think that in the end, getting tested is probably the only way to either rule out Vitamin D deficiency or discover it with certainly and deal with it in a deliberate fashion.  There is some uncertainty about appropriate levels of Vitamin D in the blood, but the safe range seems to be 30-60 ng/ml.  Anything below 30 ng/ml is insufficient, and anything above 60 ng/ml poses risks over the long term.  Anything over 100 ng/ml poses very short term risks.

One issue noted in the study pointed out by Hitman below is that people vary widely in response to Vitamin D supplementation.  This is one thing that terrifies physicians.  There are a few people whose blood levels of Vitamin D shoot up rather quickly in response to supplementation.  Many of the Vitamin D experts are pointing out that far more people are at risk due to deficiency than would be at risk with higher intake.  But for the practicing physician, the issue is that they will not be held responsible for all cause deaths or sickness resulting from Vitamin D insufficiency, but they WILL be held responsible if they don't warn against supplementation an and a patient is sickened or dies.  - George

slowandsteady

Quote from: George999 on November 22, 2008, 01:11:52 PM
There is currently available in most of the US a very affordable test for Vitamin D levels.  The cost is reported to be between $60 and $120.  The lab that does these tests with the most economic method is Quest Diagnostics.

One issue to consider is the lab you use. In the July 2008 newsletter from the vitamin D council, Quest was singled out for a potential issue with their test:

QuoteLong story short: if your lab report says "LabCorp" on the top, it is probably accurate; if it says Quest Diagnostic, it may be falsely elevated

Dr. Cannell goes into his reasoning in more detail in the newsletter. I've used LabCorp for my testing.

Here's what I was able to find about K1 safety: Vitamin K1 was found to be safe in dosages of 5 mg intravenously. This source claims that K1 was found to be nontoxic in doses of 20 mg.

Phytonadione comes in 100 mcg pills, so I need to take a whopping 50 of them to get up to 5 mg. I'm on day 2 now.

slowandsteady


George999

Quote from: slowandsteady on November 22, 2008, 02:13:42 PM
One issue to consider is the lab you use. In the July 2008 newsletter from the vitamin D council, Quest was singled out for a potential issue with their test:

Thanks so much for posting this.  The newsletter is full of useful information.  I have seen other Vitamin D advocacy organizations steering their people to One Lab which has been acquired by Quest.  What are we to do when even our medical lab work by huge providers can not be believed?  Such is the sad state of our medical institutions.  Who knows how many people are literally dying because of other tests they are screwing up?   - George

George999

I recently met with my primary physician to discuss Vitamin D.  As a result of that conversation, I am now realizing that anyone wanting to resolve Vitamin D issues will face the same kind of obstruction as one deals with in trying to get a prescription for Pentoxifylline.  Most physicians are like ten years ago when it comes to Vitamin D knowledge.  For them, when you are talking about Vitamin D, you are talking about bones, not things like Peyronies.  Therefore, I think it might be wise to carry a bit of information along with you if you choose to pursue that strategy.  The two relevant articles I recommend on the subject are:

Quote from: Johns Hopkins Gazette

Low Vitamin D Levels Pose a Large Threat to Health, Researchers Say

"Our results make it much more clear that all men and women concerned about their overall health should more closely monitor their blood levels of vitamin D, and make sure they have enough," said study co-lead investigator Erin Michos.  ...  "Now that we know vitamin D deficiency is a risk factor, we can better assess how aggressively to treat people at risk of heart disease or those who are already ill and undergoing treatment," said Michos, who added that test screening for nutrient levels is relatively simple. It can, she said, be made part of routine blood work and be done while monitoring other known risk factors, including blood pressure, glucose and lipid levels.  ...  Michos, an assistant professor at the Johns Hopkins University School of Medicine and its Heart and Vascular Institute, recommends that people boost their vitamin D levels by eating diets rich in such fish as sardines and mackerel, consuming fortified dairy products, taking cod-liver oil and vitamin supplements and in warmer weather briefly exposing skin to the sun's vitamin D — producing ultraviolet light.  ...  Michal Melamed, study co-lead investigator, who started the research as a clinical fellow at Johns Hopkins, says that no one knows yet why or how vitamin D's hormonelike properties may protect the heart, but she adds that there are plenty of leads in the better known links the vitamin has to problems with muscle overgrowth and high blood pressure, in addition to its control of inflammation, which scientists are showing plays a stronger role in all kinds of heart disease. But more research is needed to determine the nutrient's precise biological action.


The above is mainly cardio-vascular oriented, but it should get any physicians attention, since it is authored by researchers at Johns Hopkins, the same school where years ago Dr Alfred Blalock pioneered the first heart surgery ever.  When these people say that anyone concerned about their "overall health" should have their Vitamin D levels monitored, that should speak loudly.

Quote from: ProHealth

Vitamin D Experts' "Call to Action" Urges Major RDA Increase to 2000 IU

Anthony Norman, PhD - whose discoveries shape what is known today about vitamin D – has joined a group of 18 experts in urging the US government to increase its recommended daily vitamin D intake dramatically, to 2000 IU. At the same time they issued a joint statement "in support of the use of vitamin D for reducing incidence of several types of cancer, type 1 diabetes, and cardiovascular diseases."  ...  "The consensus among UC scientists who signed this statement is that 2000 IU per day of vitamin D3, a form of vitamin D, is the appropriate intake for most adult Americans,"  ... Norman explained that a 2000 IU daily intake of vitamin D can be achieved by a combination of sunshine, food, supplements, and possibly even limited tanning exposure.  ...   In its call to action, the group of 18 UC scientists, which includes researchers from the Riverside (3), Davis (3), Los Angeles (4), San Diego (5) and San Francisco (3) campuses, also issued a joint statement in support of the use of vitamin D for reducing incidence of several types of cancer, type 1 diabetes and cardiovascular diseases.


Here again, this article does not reference Peyronies, but it certainly references health issues that are of concern to most of us.  And it carries plenty of authority by the fact that it is authored by no less than 18 experts from a single highly regarded University system.   This should be enough to tell your doctor, "look, I am concerned about this and I want to find out what my Vitamin D level is and I want it to end up at or above 50ng/ml and stay there."  - George

nemo

George, my Vitamin D tested at 32 so my Doc has me on 10,000iu per day.  When I read about calcium affecting the soft tissue, I got worried because of Peyronie's.  What amount of Vit K do you think I should be taking to safeguard against this?

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.

bent70

QuoteBent,

To say every body is different is an understatement.  I see it all the time,.  That is why we get different diseases.  Since body is different and reacts differently to foods, allergens, and drugs,I think the warning you mention should serve as your warning.  Every case of hypothyroidism is certainly somewhat individual.  Even if a member or two with those conditions took ALC with no problems, that would not address what will result with you nor will it void the warning.

Thanks for the reply Hawk

George999

Quote from: Nemo on November 24, 2008, 11:21:47 PM
George, my Vitamin D tested at 32 so my Doc has me on 10,000iu per day.  When I read about calcium affecting the soft tissue, I got worried because of Peyronie's.  What amount of Vit K do you think I should be taking to safeguard against this?

Nemo

I really don't know how to assess this.  I can tell you that I am currently taking 500mcg of K1 simply because I have a bunch of K1 tabs around.  Eventually I will probably shift to K2 which I prefer, if I need to continue taking the D3 for an extended period.  - George

slowandsteady

After four days of 5 mg phytonadione, I don't really have a lot to report in the way of changes. Phytonadione is synthetic, which I generally avoid in a supplement. I've switched to natural vitamin k2, specifically menaquinone-7 from natto, at 900 mcg/day (10 of the Jarrow 90 mcg softgels).

As a dish (and I might try to find out whether my local Japanese restaurant serves it), it supplies 1000 mcg per serving, and in some regions of Japan this is eaten several times a week, so I feel that it should be safe at this level.

slowandsteady

Iceman

anyone - does anyone think that peyronies is linked to low testosterone levels - Ive started taking tribulus - does anyone have any comments regarding this??

thx

George999

Quote from: slowandsteady on November 25, 2008, 02:02:35 PM
After four days of 5 mg phytonadione, I don't really have a lot to report in the way of changes. Phytonadione is synthetic, which I generally avoid in a supplement. I've switched to natural vitamin k2, specifically menaquinone-7 from natto, at 900 mcg/day (10 of the Jarrow 90 mcg softgels).

As a dish (and I might try to find out whether my local Japanese restaurant serves it), it supplies 1000 mcg per serving, and in some regions of Japan this is eaten several times a week, so I feel that it should be safe at this level.

slowandsteady

I agree with s&s on this.  The Jarrow product is the best K product I've taken by far.  I also recommend it.  Worth the little bit extra it costs.  - George

George999

Quote from: Iceman on November 25, 2008, 07:54:05 PM
anyone - does anyone think that peyronies is linked to low testosterone levels - Ive started taking tribulus - does anyone have any comments regarding this??

thx

I am certain that testosterone plays a role in Peyronies vulnerability.  The key question is "what is causing low testosterone levels?"  Depending on the answer to that question, Tribulus may or may not be helpful.  In my case, it was not helpful to any perceptible degree.  My gut feeling about low testosterone is that it is a most often a result of a metabolic syndrome type thing.  And I now view metabolic syndrome to be a result of bad diet, insufficient exercise, and/or low vitamin D levels.  These three are the scourge of our modern world and are the root of most of the ill health and skyrocketing cost of health care.  - George

slowandsteady

Quote from: Iceman on November 25, 2008, 07:54:05 PM
anyone - does anyone think that peyronies is linked to low testosterone levels
Have we done a survey of testosterone levels? Mine are on the upper end of normal:

free testosterone: 18.5 pg/mL
serum testosterone: 780 ng/dL

slowandsteady

seaside2

And mine is chronically low. Have used the synthetic T via gels, could not tell any difference in Peyronies Disease or how I felt. Stopped using it after approximately 1 year. It appeared to be causing my testicles to shrink. ???

slowandsteady

Quote from: seaside2 on November 26, 2008, 12:45:51 PM
And mine is chronically low. Have used the synthetic T via gels, could not tell any difference in Peyronies Disease or how I felt. Stopped using it after approximately 1 year. It appeared to be causing my testicles to shrink. ???
Synthetic hormones seem to be consistently bad news. I believe that women taking bioidentical estrogen do better than with synthetic estrogen, for example.

Have you ever tried the testosterone precursor DHEA for raising testosterone levels? There is another form 7-keto-DHEA that only influences DHEA levels without affecting testosterone. Some good DHEA discussion here.

slowandsteady

nemo

George, what you're saying about low Testosterone and metabolic issues sounds very familiar.  A couple months ago I flew to Monterey, CA to be seen by Dr. Romeo Mariano, one of the country's most knowledgeable docs on male hormone issues (he's quite well known anywhere on the internet where there's a discussion of TRT, etc.) He's also just frighteningly smart on endocrinology and internal medicine (plus, he's a psychologist on top of that).  I met with him for 2 hours.  

I've had three testosterone tests over the last year and a half.  The first was 235, then 434, then 460.  I'm only 37.  Dr. Mariano had a whole lot of other blood work done and found that my Estradiol was 10, which he said was too low and could result in ED issues in and of itself, beyond the Testosterone level.  Beyond that, he didn't like my Vit. D level and some other aspects of my blood work.  

Rather than put me on supplemental Testosterone, he said he thinks my problem is twofold: lack of proper nutrition and lack of restorative sleep.  He said it's a metabolic issue that has my hormones all screwed up, operating in fits and starts, never very consistent.  He's got me taking numerous supplements: Vits E, D, C, B125, B12, Multivitamin, DHEA, and a prescription for deeper sleep.  I was impressed that he wants to get to the heart of the problem, not just slap on Testosterone.

He was not very familiar with Peyronie's but I did ask him if he thought the Propecia I took for two years (about a year before I got Peyronies Disease) could have played a factor.  He was inclined to think not, but said he couldn't really ever know for sure.  

Interesting stuff ... I believe my Testosterone level came up (the little it did) because I'd been supplementing with Arginine and Zinc, and he told me I could keep taking that stuff (along with the Pentox), because my erectile performance is much better since I've been doing it.  I hope the nutrition and sleep will increase my hormone levels even further.  I guess the old saying is true - you are what you eat.

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.

George999

Nemo,  When it comes to things like Testosterone, I increasingly believe that it pays to take a hard look at external or environmental factors.  It is all too easy to try to cut to the chase and do Testosterone replacement directly, but the body is a veritable chemical factory when it comes to hormones and they are all interlinked.  Messing with any of them is asking for trouble.  I have sort of learned that lesson over again myself with Melatonin.  It is not that these hormones are harmful in and of themselves.  It is that the body seeks to maintain a balance among them in order to maintain health.  When you disrupt that balance, problems ensue.  The unique thing about Vitamin D is that it is probably the ONLY hormone that we are allowed to control, since all of it comes from external or environmental sources without exception.  The reality is that even the people who rail against the use of Vitamin D as a supplement are controlling it externally by unnaturally restricting it.  Note that those same people usually have no problem with sun blocks that completely eliminate natural Vitamin D production from sunlight.  The result is that Vitamin D is probably the most unnaturally modified nutrient in the human environment.  And this is precisely what we should be looking to correct, not all the downstream stuff that ends up being trashed.  So I think your endocrine doc is very smart and is on precisely the right track by attacking at those points that are environmental in nature rather than try to use pharmacological short cuts.  I believe this approach will pay off hugely in the long run.  - George

gerMike

Interesting to hear. My sleep was never good. I rarely sleep more than 6 hours in the week. This could be a reason for low testos and numerous problems I got. Thanks for the hint.

Nemo: What was your sleep duration at night before testos level increased again?  

nemo

It wasn't a matter of sleep duration for me, it was a matter of never getting prolonged deep REM sleep.  I would wake up frequently during the night (to roll over, for instance) then go right back to sleep.  These constant interuptions keep me from getting deep, restorative sleep, which we all need.  I'd wake up feeling as tired as I did when I went to bed, it would make no difference if I got 5 or 8 hours ...

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.

jackp

Sleep problems, feel tired even after a nights sleep?
I had that problem for about 20 years.
What caused it? Sleep Apnea
Go to a sleep clinic and get checked. You will be glad you did.
Jackp

nemo

George, we've addressed my concerns with large doses of Vit D before, but my hormone doc also has me taking 2000mg of Vit C a day.  Somewhere, I seem to recall concerns about too much Vit C and Peyronie's.  Does this worry you in any way?

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.

George999

Quote from: Nemo on November 28, 2008, 08:37:08 PM
George, we've addressed my concerns with large doses of Vit D before, but my hormone doc also has me taking 2000mg of Vit C a day.  Somewhere, I seem to recall concerns about too much Vit C and Peyronie's.  Does this worry you in any way?

Nemo

Not really.  Personally I prefer the time release version with large doses, but I would not really be concerned about any kind of toxicity.  Some people *might* have a kidney stone issue, but as I recall, a little bit of magnesium can help avoid that.  But 2,000mg of Vit C is not really that much.  - George

slowandsteady

Here's a current update on my vitamin K efforts. I do notice a reduction in inflammation in my active plaques with vitamin K. Whereas I had some low level pain during the day, with vitamin K the inflammation is minimal and the pain goes away. My working hypothesis for the mechanism is that vitamin K prevents soft tissue calcification.

I have tried two forms of vitamin K1 and two forms of vitamin K2. The only two that had an effect for me were the K2 forms, MK-4 and MK-7.

One supplement that has had a pro-inflammatory effect and that I don't recommend is resveratrol (despite my really wanting it to work for me, since it has numerous health benefits). In doses of 5g down to as low as 250 mg (taken with whey protein to enhance bioavailability), 99% t-resveratrol increased inflammation and pain in my plaques. I wonder whether this is because resveratrol chelates copper.

I'm never one to quit, so while continuing with the vitamin K, I will pursue other hypotheses.

1) perhaps the condition can be improved with more local administration of vitamin D. D3 from a softgel and DMSO?
2) infectious agent: could Peyronie's be caused by an infectious agent like those that cause lyme? I realize that this area is somewhat of a can of worms...

slowandsteady

Tim468

I am interested in the idea of vitamin K being helpful but have not experienced it. After reading some of the forums regarding supplementing with it, it seems I may have been using the wrong kinds.

What sorts, brands and from what sources do people actually buy?

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

George999

Quote from: slowandsteady on December 02, 2008, 02:28:17 PM

Here's a current update on my vitamin K efforts. I do notice a reduction in inflammation in my active plaques with vitamin K. Whereas I had some low level pain during the day, with vitamin K the inflammation is minimal and the pain goes away. My working hypothesis for the mechanism is that vitamin K prevents soft tissue calcification.

I have tried two forms of vitamin K1 and two forms of vitamin K2. The only two that had an effect for me were the K2 forms, MK-4 and MK-7.


I agree that Vitamin K may be helpful, especially in combination with Vitamin D.  Right now I am taking K1 just because I have a lot of it on hand.  But when its finished I am going back to Jarrow's MK-7.  Its the very best when it comes to vitamin K.

Quote from: slowandsteady on December 02, 2008, 02:28:17 PM

One supplement that has had a pro-inflammatory effect and that I don't recommend is resveratrol (despite my really wanting it to work for me, since it has numerous health benefits). In doses of 5g down to as low as 250 mg (taken with whey protein to enhance bioavailability), 99% t-resveratrol increased inflammation and pain in my plaques. I wonder whether this is because resveratrol chelates copper.


Funny thing!  I had to quit Resveratrol as well.  It gave me a rash.  I found that the rash was intense with some brands and very minor with others.  My conclusion was that I was probably not reacting to the Resveratrol, but to the Knotweed that it was extracted from and that some brands were better refined than others.  But that was just speculation.

Quote from: slowandsteady on December 02, 2008, 02:28:17 PM

I'm never one to quit, so while continuing with the vitamin K, I will pursue other hypotheses.

1) perhaps the condition can be improved with more local administration of vitamin D. D3 from a softgel and DMSO?
2) infectious agent: could Peyronie's be caused by an infectious agent like those that cause lyme? I realize that this area is somewhat of a can of worms...

slowandsteady

A natural form of transdermal Vitamin D delivery is via UVB light and it doesn't carry any of the risks that DMSO does.  But its expensive and you need to make sure you don't overexpose yourself and get burned.  I have been using a halogen lamp for this but after discovering that it exposes me to risky UVC, I am getting an expensive mecury vapor lamp with a UVC filter in place to block the UVC.  I have been a bit concerned about this issue but have just discovered that commercial sunlamps sold prior to the 1970's era all emitted UVC and only recently has this been recognized as a danger.  So a bit of exposure that I had probably won't be enough to do me in.

As for the infectious agent theory, anything is possible, but I think that is unlikely.  More and more evidence seems to point in the direction of a metabolic cause, namely a deficiency in Vitamin D3.  That is why top Vitamin D experts are advising that the RDA be raised immediately from 200IU to 2000IU.  - George

Hawk

Quote from: George999 on December 02, 2008, 11:02:54 PM

A natural form of transdermal Vitamin D delivery is via UVB light and it doesn't carry any of the risks that DMSO does.  But its expensive ....

You can buy UVB bulbs at any good pet store and the cost is modest $10-$15 for a bulb.  You must make sure the label says UVB and not just UV or full spectrum etc.  I use them for my little lizard (with 4 legs).
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

Quote from: Hawk on December 03, 2008, 12:33:10 AM
Quote from: George999 on December 02, 2008, 11:02:54 PM

A natural form of transdermal Vitamin D delivery is via UVB light and it doesn't carry any of the risks that DMSO does.  But its expensive ....

You can buy UVB bulbs at any good pet store and the cost is modest $10-$15 for a bulb.  You must make sure the label says UVB and not just UV or full spectrum etc.  I use them for my little lizard (with 4 legs).

Hawk,  I think the problem with these units is 1) how much UVB do they actually put out?  would it be a sufficient amount? and 2) do they filter out the supposedly harmful UVC?  Other than that, they might well work, especially on a small area of the body and might be quite helpful, in fact their small size might actually make them preferable to the larger more expensive units.  My larger concern would be the UVC question as to long term use.  Perhaps somewhere that issue is documented.  - George

Hawk

Some reptiles need UVB and UVA, some only UVB.  It seems ,in doing research lately I read one manufacture that specified in detail the amount and type.  If I find it I will post it.  It is however probably small amounts since it is designed to remain on most of the day.

You are probably way past this but as a general issue I just found this entire Wikipedia article very interesting.
http://en.wikipedia.org/wiki/Ultraviolet
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,  Thanks for the Wikipedia link.  I read it before sometime long ago, but it was a good read as a refresher.  It really doesn't include too much info on the the Vitamin D side though.  The recent research I have read indicates that the most beneficial Vitamin D regimen is frequent (daily) brief (5-10 minutes) UVB exposures.  This limits the amount of exposure time (carcinogenic risk) and maximizes the amount of benefit (anti-carcinogenic Vitamin D generation).  There is still a huge battle going on between the pro-UVB people and the cancer hysteria anti-UVB types who continue to insist that any amount of exposure is too much.  But current evidence is pointing in the direction that the human body is designed too deal with and thrive on sunlight and that the risks are mainly associated with excessive, infrequent exposures.  As you note, the small reptile lamps are designed to provide continuous low level exposure which might not be practical for humans.  I think I would probably find it a bit embarrassing to explain to my boss what I am doing with my new plug in accessory.  ;D  - George

slowandsteady

Quote from: George999 on December 02, 2008, 11:02:54 PM
I agree that Vitamin K may be helpful, especially in combination with Vitamin D.  Right now I am taking K1 just because I have a lot of it on hand.  But when its finished I am going back to Jarrow's MK-7.  Its the very best when it comes to vitamin K.

Quote from: slowandsteady on December 02, 2008, 02:28:17 PM

One supplement that has had a pro-inflammatory effect and that I don't recommend is resveratrol (despite my really wanting it to work for me, since it has numerous health benefits). In doses of 5g down to as low as 250 mg (taken with whey protein to enhance bioavailability), 99% t-resveratrol increased inflammation and pain in my plaques. I wonder whether this is because resveratrol chelates copper.

Funny thing!  I had to quit Resveratrol as well.  It gave me a rash.  I found that the rash was intense with some brands and very minor with others.  My conclusion was that I was probably not reacting to the Resveratrol, but to the Knotweed that it was extracted from and that some brands were better refined than others.  But that was just speculation.

I may have to take back that resveratrol claim of mine -- now I'm not so sure. Let me explain: I usually take resveratrol with whey (Jarrow chocolate) to enhance its bioavailability. I also throw some berry green and some soy lecithin. I made my shake yesterday without the resveratrol and had a similar inflammatory response, so now I'm a little confused. I took 500 mg of resveratrol mixed in fish oil, and no reaction.

Quote from: George999 on December 02, 2008, 11:02:54 PM
A natural form of transdermal Vitamin D delivery is via UVB light and it doesn't carry any of the risks that DMSO does.  

Now transdermal D3 with DMSO (I just broke open a tab of D3, applied it, and mixed some DMSO on top) on the other hand has in just a day and a half shown surprising promise in symptom relief, especially in an area of constriction (hourglassing), as opposed to a painful active plaque area. I'll keep it up and see what happens. I do know that DMSO can ferry lots of different chemicals across the skin, so you have to be careful.

slowandsteady

newguy

Is it important to buy vitamin 'D3' capsules, as I bought some 'vitamin d' capsules a few days ago but it doesn't specify anytimir beyond that and the i.u amount?  Also if the appropriate D3 to vitamin k ratio is not known could it be possible to do more harm than good in terms of excess calcium levels in soft tissue?

slowandsteady

I like this vitamin D3 softgel made by Jarrow.

Health Pro Labs also makes a transdermal vitamin D3 cream, which might be an interesting product. They make many different transdermal products; I would imagine that they have developed an expertise in transdermal delivery. I'm going to email them to see whether they know how much of their product gets through the skin. In general, the larger the molecule, the harder it is to get through.

slowandsteady

George999

There have been several posts dealing with Vitamin K lately, one including a question about appropriate dosing.  Here is an article discussing a recently completed study dealing with Vitamin K.  I think it includes some interesting and informative tidbits, so I pass it along here:

Quote

Vitamin K Slows Insulin Resistance in Older Men

The three-year study, by researchers at the Jean Mayer Human Nutrition Research Center on Aging at Tufts University in Boston, included 355 non-diabetic men and women ages 60 to 80. One group took daily multivitamins containing 500 micrograms of vitamin K (five times the recommended level), along with a calcium and vitamin D supplement. The other (control) group took no vitamin K supplementation but did receive the multivitamin and the calcium and vitamin D supplement. Both groups were told to keep eating their normal diets. ...  By the end of the study, the men who took vitamin K had improved insulin resistance and lower blood insulin levels than men in the control group. The study was published in the November issue of the journal Diabetes Care.


Certainly this report will not answer all the questions, but it does present a rational for Vitamin K supplementation which intersects with Peyronies issues and the 500mcg/day dosage gives some sort of benchmark level to work from.  - George

slowandsteady


newguy

George - Thanks for posting the study link. It really does help when different parts of the puzzle come together like this. Of course I'm not so optimistic to assume that a vitamin regime is a cure for peyronies but since visiting this forum I have come to the conclusion that I'd be foolish to exclude making it a meaningful part of the regime. There is science to justify it.

Currently I take:

Basic Multivitamin Pills
Vitamin E (Jarrows Gamma E 300)
Arginine
Omega 3,6,9 Oils
Acetyl L Carnitine
A further Carnitine supplement (Jarrows Carnitall 600)
L-Carnisone
N-Aceytl-L-Cysteine

Vitamin D
Vitamin K

I am always wary of going too far with any approach and as such like to keep the the amount of vitamins I take under control. As such I'm thinking that at some stage I might drop the supplements I've underlined from my regime, with the thinking being that ALC may suffice in that regard. I'd like a secind opinion though, so do you have a view on this approach?

In addition to the above supplements I have a very healthy diet compared to years back. I eat mainly fish, chicken, nuts and vegatables. Again I feel that for the sake of my sanity the occasional treat is acceptable, but I do make sure that it's very occasional.

Last but certainly not least, I take pentox 2-3 times a day. It's difficult to get a prescription for it for peyronies in the UK (which is absurd), and whilst I did manage to once, I have now looked online for my supply. I still have some left so I had time to explore sources. The mexican meds site listed here was the route I intended to go, but I send them an enquiry via email and it bounced back with a "mailbox is full" message. This to me is unprofessional and either means that they are getting masses of customer complaints or that they have not replied to peoples enquiries in a very timely fashion. For that reason I decided to give it a miss (they may well have legit pentox though, i have no way of knowing - other members here seem happy). I appear to have found a supply via http://www.inhousepharmacy.co.uk/ . This is ideal as I have dealt with the site in the past and they are reliable. It's not a primary product on the site, but they are ordering it in for me. I took the time to sign up to a user driven forum whose members effectively vet and comment on online pharmacies and the site also gets the thumbs up there.  When the product arrives I will let you all know what I think, then maybe others in the UK can have a "hopefully" reliable source if they are not able to obtain pentox through any other means. It's a last resort, but a useful one too.





George999

Newguy,  I can only tell you what I am taking right now.  I have dropped the Vitamin E, Arginine, ALC, and NAC.  It is not because I think these are ineffective, because actually they were very effective for me especially the ALC.  It is just that I am trying to concentrate on what seems to be working really well.  And for me, that is the Pentox and Vitamin D.  I am also taking the Omega 3 stuff, the Carnosine and the Vitamin K, along with a few other general purpose supps.  I do like ALA and PolyPC for example and continue to take those.  I also like Aloe Vera very much and am back on that.  But my major goal right now is to get tested for serum Vitamin D and try to get that up to 50ng/ml and keep it there.  - George

slowandsteady

I found this study interesting, Green tea attenuates diabetes induced Maillard-type fluorescence and collagen cross-linking in the heart of streptozotocin diabetic rats (PMID 17336542):
QuoteGreen tea administration to diabetic rats significantly (P<0.05) decreased the fluorescence (0.73+/-0.02) whereas increased the solubility of collagen (41.5+/-1.04) indicating the reduction in advanced glycation end products and collagen cross-linking. The present study reveals that green tea by ameliorating myocardial collagen characteristics may provide a therapeutic option in the treatment of cardiovascular complications of diabetes.

The dosage was 300 mg (kg body weight)(-1)day(-1). Given the factor of 6 loose rule of thumb, that's still a bunch of green tea extract at 3.4 grams for a 150 pound human. OTOH, this site

Green tea polyphenols also suppress collagen formation in benign skin tumors called keloids ("Keloids are benign skin tumors characterized by collagen accumulation and hyperproliferation of fibroblasts"). It also reduced the "cross-linking of tail tendon collagen" of diabetic rats (PMID 17884275). In case you're wondering about the use of rats with induced diabetes, the high glucose found in diabetes increases the rate of formation of advanced glycation endproducts, which do bad things like harden arteries, cause kidney failure, and harm the retina.

A big question is: to what extent is the cross linking in Peyronie's similar to that in diabetes? To slow down AGE formation, supplements like benfotiamine and pyridoxamine are available. Lowering blood glucose through good diet choices is a good idea for anyone.

slowandsteady

Edit: from wikipedia, "A fibroblast is a type of cell that synthesizes the extracellular matrix and collagen, the structural framework (stroma) for animal tissues, and play a critical role in wound healing. They are the most common cells of connective tissue in animals."
On keloids, "Biologically, keloids are fibrotic tumors characterized by a collection of atypical fibroblasts with excessive deposition of extracellular matrix components, especially collagen, fibronectin, elastin, and proteoglycans." This doesn't seem terribly unrelated to Peyronie's.

George999

Quote from: slowandsteady on December 12, 2008, 04:14:20 PMA big question is: to what extent is the cross linking in Peyronie's similar to that in diabetes?

I think they are the same thing with the same causal factors.  But that is just my opinion.  I have used Green Tea in the past and have quite a bit on hand.  I have always considered it interesting and probably useful and still do.  - George

Old Man

Note to all:

Green tea is now considered one of the better antioxidants in the supplement field. We have been using for quite some time since my wife has Type 2 diabetes. It seems to be working well for her. Our regular dinner tea is also Green tea and it works well for both of us too.

So, whether or not it has a place in the realm of Peyronies Disease, who know? At any rate we'll continue to use it.

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

You know, I just can't stand the taste of Green Tea ... I have started drinking lots of unsweetened Black Tea (brewed myself from Lipton's loose leaf) ... I realize it's not as good as Green in most instances, but the taste/benifit trade off is one I'm willing to make.

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.

newguy

Nemo - You could always try green tea capsules. I know it's easy to become a little pill popping mad, but they are a decent alternative if you don't like the taste.

slowandsteady

Quote from: George999 on December 12, 2008, 08:06:23 PM
Quote from: slowandsteady on December 12, 2008, 04:14:20 PMA big question is: to what extent is the cross linking in Peyronie's similar to that in diabetes?

I think they are the same thing with the same causal factors.  But that is just my opinion.  I have used Green Tea in the past and have quite a bit on hand.  I have always considered it interesting and probably useful and still do.  - George

I don't have a particularly high hemoglobin A1c number at 5.4% (this test tells you about your body's AGE load; the reference range is 4.8-5.9%). There must be something else to it, otherwise diabetics would get Peyronie's in high numbers ...

After a google search, I found this study, "The Relationship between Diabetes mellitus, Impotence and Veno-Occlusive Dysfunction in Peyronie's Disease Patients":
QuotePeyronie's disease is an ill-defined condition that often leads to severe penile deformity and sometimes erectile dysfunction. Penile Doppler studies indicate veno-occlusive dysfunction as the principal cause of poor rigidity in Peyronie's disease patients. Diabetes mellitus is also a known cause of impotence and its prevalence tended to be higher in patients with Peyronie's disease. ... We believe there is a close relationship between diabetes mellitus and Peyronie's disease, considering our high incidence. We also conclude that diabetes mellitus is not the main cause of impotence in patients with Peyronie's disease.

I wasn't expecting to find that. It looks like there may a stronger link than I thought.

slowandsteady


George999

We now know that Vitamin D accomplishes key functions in the body related to regulation of genes and DNA.  This is such a low level function in the body that it underlies virtually everything else.  Indications are that blood levels of 50ng/ml are required in order for Vitamin D to accomplish this function optimally.  As Vitamin D levels decline, things begin to go wrong on the genetic level in areas that relate to an individual's particular and unique genetic weaknesses.  There are always "things" that can "help" these specific genetic anomalies and the physical manifestations (disease) that results, but the underlying issue is often (but not always) Vitamin D deficiency.  So this is why people who exhibit one of these diseases are often at risk to develop others.  They all flow in the generalized stream of systemic inflammation and localized glycation hotspots.  Since the underlying issues are at the genetic level, they manifest over a long period of time reflecting slow genetic decay in vulnerable genetic areas unique to the particular individual.  Thus, the cure is probably equally elusive, requiring approximately five years of stable and optimal Vitamin D levels to gradually pull the individual's genetic map into an ordered state.  But all of the research on Vitamin D is revealing it to be the closest thing to the "holy grail" of health that has ever been discovered previously.  - George

hornman

I could bet that I an very low in D even though I havn't been tested.  The only parts of me that have seen the sun in the past twenty years are my head, face and arms.  Not very often for them either.  I have also not been a milk drinker.  I am now taking supplements and next summer I will make it a point to sun myself.