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

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MUSICMAN

As I look down the topics in the forum I find that "Success" was 16 down from the top. It would seem that if we had more success or real improvement that topic would float a little higher up. If you read the success stories most are from surgery, implant, ved usage. When I was first diagnosed I hoped to be one that would recover naturally. Remember how most urologists take the wait and see course of action. Don't forget to take your vitamin E as that will help. Please continue taking your vitamins, herbs & supplements as even if they don't cure you they probably won't hurt. I would like nothing more that to take a hand full of pills and my bent penis would return to as it once was. That is desperation dreaming. If you have a 35 deg. bend and what you use or take seems to bring some improvement, good for you. If I had a 35 deg. I would consider myself cured. The truth is that I don't think the pill has been developed yet that will dissolve scar tissue. Surgery can cut it out. (Most people don't want to hear the word cut) If I was a person of financial means I would sign up for surgery today. A real drug like Xiaflex may bring some improvement. (I was told that Xiaflex may lessen my bend but never bring me close to being straight) A real cure will come sometime down the road but I doubt if it will be for adding a little more vitamin D in our diet. Lets get off desperation dreaming and get the professionals to find us a real answer.

Beano

S&S,
The thread on LDN you posted is interesting.
Here is a quote from post#59

Ive just had my total testosterone checked
Its come back high after 1 month on 3-3.5mg LDN
Testosterone 30 nmol/L (range is 9.9-27.8 nmol/L)
not a huge amount over range..however Im not taking anything other than LDN that could make this elevate..this is rather high for a 43 yr old.
On the positive side my Thyroid Antibodies have dropped from
900 to 290...a huge drop..
Also my Liver Function Test 'GGT' dropped from
130 -> 76 ...getting closer to normal.
25 OH D is 100 nmol/L (range 60-110 nmol/L) so pretty OK no need to supp...
so to wrap up LDN appears to be doing good..however some bad as well...previous to this I had mid-range normal levels.
Im still experimenting with dose..and will get it all checked again in month.

On a personal note.
I am finding the lack of sleep with LDN becoming a drag. I go back to work offshore on Wednesday for 6 weeks, so may try daytime dosing while at work.
My wife has had no sleep problems with LDN. But, has developed flu like symptoms this morning.

slowandsteady

Quote from: Beano on August 07, 2009, 11:46:23 PM
S&S,
The thread on LDN you posted is interesting.
Here is a quote from post#59
[snip]
On a personal note.
I am finding the lack of sleep with LDN becoming a drag. I go back to work offshore on Wednesday for 6 weeks, so may try daytime dosing while at work.
My wife has had no sleep problems with LDN. But, has developed flu like symptoms this morning.

Are you taking any melatonin? I take 6g at night. Hopefully I'll sleep through it when my LDN comes in. How much naltrexone are you taking, and has it helped with pain? With my twice daily 2g curcumin mixed in oil, I've been pain-free (even discomfort free) for over a month now, with no curvature progression.

s&s

George999

Just a word of caution on melatonin.  Most melatonin products now carry a warning regarding people with autoimmune issues using it.  I would be very cautious.  I ended up with neuropathy and discovered that melatonin greatly aggravates it.  I wouldn't say that it CAUSES it.  But I would say that it is probably capable of TRIGGERING it if you are susceptible to it.  - George

slowandsteady

Thanks George. Melatonin and autoimmune is something to dig deeper into.

PMID 19435479:
QuoteConsequently, estrogens (especially in patients affected by B-cell-driven immunity) and melatonin should be avoided, and glucocorticoids (as replacement therapy) and vitamin D are allowed in the treatment of autoimmunity.
I'll have to dig deeper into this.

Hawk

As George pointed out, Melatonin is a at least a suspected if not a documented problem with most autoimmune diseases.  Unfortunately it is an immune enhancer and beneficial in several forms of cancer prevention.  It becomes the age old quandary of damned if you do damned if you don't  :)
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,  I believe the problem with Melatonin is NOT its immune enhancement qualities.  Both melatonin AND LDN raise endorphin levels and endorphins are immune enhancing.  BUT Melatonin creates problems and LDN relieves problems.  So the problem more likely has something to do with another of melatonin's functions.  Most of these hormones have multiple functions and coexist in a delicate balance.  That is the problem with directly repleting individual hormones.  When things get out of balance, bad things can happen.  I know that stimulating the immune system in the case of autoimmune disease is counter intuitive, but so is suppressing the immune system in the case of cancer, and we do that all the time.  The immune system is far too complex and nuanced to be described as "strong" or "weak".  The immune system gets out of kilter in multiple ways and the challenge is not to "strengthen it" or "weaken it" but rather to balance it.  That is the beauty of vitamin D, the ONLY hormone that we NATURALLY supplement all the time since our body is not capable of manufacturing it without rare food sources or exposure to sunlight.  Thus it is the only hormone completely subject to lifestyle decisions. - George

newguy

Have any other members started on Low Dose Naltrexone yet? I'm interested to see how people get on with it. From looking at the life extension site and peoples reactions to it over a period of time,  even in low doses it does sounds somewhat heavy duty compared to many supplements people are taking here. I suppose that has to be weighed up against the possible potential to deal with peyronie's inflammation though. It's at least one treatments that should be fairly obvious and unambiguous as to whether it works or not.

I supposeit depends somewhat on the cause of peyronie's disease in the individual. If someone has immune issues I can see how it can be useful. If a person appears to have no such issues and instead their conditions seems to tally more with the "trapped inflammation" theory, maybe it won't be of as much use. I really don't know, but it will be interesting to see how this one unfolds.

Hawk

Quote from: George999 on August 09, 2009, 11:42:50 AM
I know that stimulating the immune system in the case of autoimmune disease is counter intuitive, but so is suppressing the immune system in the case of cancer, and we do that all the time.  The immune system is far too complex and nuanced to be described as "strong" or "weak".  The immune system gets out of kilter in multiple ways and the challenge is not to "strengthen it" or "weaken it" but rather to balance it.

George, I don't argue the point that it is a tuned immune system that is the goal (or problem) rather than strong vs weak.  Your other point however leaves me racking my brain for any cancer treatment that is designed to or intended to suppress the immune system.  Some do as a undesired side-effect, but huge effort and expense are always directed to prevent that from happening.
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,  I believe that a number of currently used cancer meds are immune suppressive.  And I understand that this is not a desired effect, but is rather an undesired side effect as you note.  My point is that in the case of drugs useful for autoimmune disease, you may well end up with the same case.  A beneficial drug may have the unwanted side effect of being immune strengthening and still might be useful as it might have other beneficial effects on the immune system that outweigh the unwanted effect.  My concern is that people fought LDN use for autoimmune disease based on that very argument in the face of case studies indicating positive results and they are still fighting that battle in the face of preliminary controlled trials in spite of the fact that everyone of these trials has ended in success.  It is the same sort of attitude that vitamin D researchers are facing in spite of overwhelming evidence on the side of the need for major increases in vitamin D intake.  Fortunately, in the case of vitamin D, these people are finally losing ground.  Creighton University just received $4 million from the NIH to do an extensive (2300 individual) follow up on their study finding heavy vitamin D supplementation in older women resulting in an astonishing 77% reduction in cancer risk within two years.  And the WHO is planning a massive vitamin D study soon as well.  Scotland is also now in the forefront of vitamin D research.  I believe that they will eventually find that vitamin D supplementation will result in a massive health benefit to 95% of the population.  A few it might prove deadly to, but that is the case with most modern medications such as statins which a few people regularly die from.  It will be up to the individual to decide if the risk/benefit ratio works for them.  Personally I have already decided.  But I hate it when people are obstructionist based on their own personal prejudices.  There are so many approaches out there just reeking with potential value that are being buried in ignorance rather than being responsibly investigated.  - George

Beano

I have been trying to take the 4.5mg dose of LDN like a man. But alas, it looks like I'm not up to it (squeak squeak). So, I've dropped the dose down to 3mg the same as the wife is taking with no problems, and had a wonderful nights sleep last night.
As stated previously, My multiple allergies have stopped since the first dose of LDN, the RA in my right big toe, the pain stopped after the first dose of LDN and since then the swelling has gone. Which I think is miraculous considering I have been in pain with this for over a year. My psoriasis on my elbows has improved but I still have some rough skin.
As for the Peyronies Disease, I'm not sure how much improvement there has been. To me the plaque feels softer and my erections feel harder, but it may be only wishful thinking. I am also taking since the beginning of March L-Arginine and a Thai root herb for night time erections thats called Butea Superba. If you google it, there are plenty of write ups and I highly recommend it.

slowandsteady

Quote from: Beano on August 09, 2009, 10:28:07 PM
I am also taking since the beginning of March L-Arginine ...
Have you tried pycnogenol with your l-arginine (see my earlier post)? I would say it works better than viagra, but I've never tried viagra. ;) I'm taking 2.5 g of l-arginine and 100mg of pycnogenol on waking.

Beano

No, I'm not using pycnogenol. But it looks interesting, I will give it a go if I can find some.
I started taking Alpha lipoic acid and ALC a couple of days ago, I read were it is recommended with LDN

George999

Quote from: Beano on August 09, 2009, 10:28:07 PM
As stated previously, My multiple allergies have stopped since the first dose of LDN, the RA in my right big toe, the pain stopped after the first dose of LDN and since then the swelling has gone. Which I think is miraculous considering I have been in pain with this for over a year.

WHOA!  You boosted your immune system with LDN and your RA problem is resolving.  Will wonders never cease!  I wonder how the immuno-phobic LDN skeptics would explain this?  - George

slowandsteady

Quote from: George999 on August 10, 2009, 10:55:25 AMWHOA!  You boosted your immune system with LDN and your RA problem is resolving.  Will wonders never cease!  I wonder how the immuno-phobic LDN skeptics would explain this?  - George
;) To be fair, the mechanism of LDN's impact on the immune system is not well understood. It increases the levels of beta-endorphins:
QuoteThe brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood in the following days. Animal research by I. Zagon, PhD, and his colleagues has shown a marked increase in metenkephalin levels as well.

Beta-endorphin is "used as an analgesic in the body to numb or dull pains" (wiki).

Also,
QuoteIn general, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body's normal production of endorphins is the major therapeutic action of LDN.

I was unaware of this take on the cause of autoimmune disorders. The above quotes come from the low dose naltrexone site.

Also at the site is a page on "LDN and Autoimmune Disease":
QuoteThere is growing recognition in the scientific community that autoimmune diseases result from immunodeficiency, which disturbs the ability of the immune system to distinguish "self" from "non-self". The normalization of the immune system induced by LDN makes it an obvious candidate for a treatment plan in such diseases.

So, if any of this is true, it may be more of a retraining of the immune system.

s&s

newguy

If the possible application for LDN in peyronie's disease is to impact the inflammatory response, then it will be pretty easy to tell if it isn't has an application here. If someone takes it for two or three months and experiences no change then it likely isn't for them. If multiple people try it with no positive response then I guess its positive effects don't stretch to peyronie's. Hopefully it will hold an application for us though. It's not beyond the realms of possibility, and it'd be a shame not to find out through lack of trying.

George999

Anyone who has concerns about the effect of vitamin D on the calcification of soft tissue will want to read this article:

Coronary Artery Calcification Linked to Vitamin D Deficiency


- George

skunkworks

Quote from: newguy on August 10, 2009, 02:57:29 PM
If the possible application for LDN in peyronie's disease is to impact the inflammatory response, then it will be pretty easy to tell if it isn't has an application here. If someone takes it for two or three months and experiences no change then it likely isn't for them. If multiple people try it with no positive response then I guess its positive effects don't stretch to peyronie's. Hopefully it will hold an application for us though. It's not beyond the realms of possibility, and it'd be a shame not to find out through lack of trying.

That is exactly how I feel about it. Can't hurt, might help and there is enough information suggesting that it might help to make it worth a shot.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

newguy

Quote from: skunkworks on August 11, 2009, 10:19:31 PM


That is exactly how I feel about it. Can't hurt, might help and there is enough information suggesting that it might help to make it worth a shot.

Agreed, I'm looking forward to those trying LDN getting back to us with their thoughts soon.

slowandsteady

I see after reading this post that the full text of the "Low-dose naltrexone for disease prevention and quality of life" paper is available (PMID 19041189).

I've just started reading it; I find it well written, interesting, and potentially applicable for Peyronies Disease. Excerpt:
QuoteRecent studies have shown BE [beta-endorphin, which LDN raises] concentration in circulating
blood cells to be dramatically low in rheumatic diseases such as
arthritis, lupus and gout, with significant inverse correlations between
BE and both rheumatoid factor and erythrocyte sedimentation
rate and hence the likelihood of inflammation [25]. Levels of
BE were as low as 1/8 to 1/4 normal in other autoimmune-related
diseases, including fibromyalgia [26], Crohn's disease [27], multiple
sclerosis [28], chronic migraine [29] and cluster headaches
[30] and endometriosis [31].
[...]
Recent work on collagen-induced arthritis in rats have found BE
treatment to reduce clinical arthritis manifestations by shifting the
balance of TH-1 and TH-2 cells toward TH-2. This comes from
down-regulating the NF-kappa2 pathway, including tumor necrosis
factor alpha, Interleukin-1beta, Interleukin-6, inducible nitric
oxide synthase, and mRNA for matrix metalloproteinase-2 and
mmp-9 [32]. Dr. Sacerdote and her colleagues in Milan have
reached the same conclusion that BE increases ameliorate autoimmune
diseases by suppressing TH-1 and augmenting TH-2 cells[33].

So, are circulating levels of beta-endorphins low in our case, as would be expected if there is a strong autoimmune component to Peyronies Disease?

For further reading about its effect in mood and focus, there is another good thread I googled at mind and muscle.
s&s

MasterShake

Im looking into getting L-arginine, What dosage and frequency should i take?
also, i talked to my urologist about pentox and he said he personally doesnt prescribe it, so how should i go about getting it?

slowandsteady

In pigs, quercetin bioavailability was enhanced with MCT oil. Quercetin seems to enhance curcumin's bioavailability too. Time for a curcumin and quercetin in coconut oil nightcap.

newguy


Interesting about it being more bioavailable in oil. I had been taking it in pill form 15 mins before taking curcumin with oil. Silly me. I may as well just add them both. Also, maybe it'd make sense to add Genistein too, though best to give piperine a miss unless for those taking other supplements/medications:

http://www.delano.com/ReferenceArticles/curcumin-enhancement.html

Genistein study:

QuoteOBJECTIVE: To observe the effects of Genistein on TGF-beta1 expression and the intracellular free Ca2+ concentration in human hypertrophic scar fibroblasts, and to discuss the mechanism of the anti-fibrosis effect. METHODS: Fibroblasts were derived from human hypertrophic scar tissue and cultured in vitro. Genistein in different concentrations (25, 50, 100 micromol/L) was administrated to the fibroblasts, respectively. After 48 hours of co-culture, the expression of TGF-beta1 mRNA and protein were examined by RT-PCR and Western-Blot assay respectively. The intracellular free Ca2+ concentration in hypertrophic scar fibroblasts pretreated by Genistein was determined by laser confocal scanning microscopy with or without the stimulation of bFGF. RESULTS: Genistein inhibited the expression of TGF-beta1 in hypertrophic scar fibroblasts on a concentration-dependent manner. bFGF significantly elevated the intracellular free Ca2+ concentration, however its stimulating effect was remarkably alleviated when the fibroblasts were pre-treated by Genistein. CONCLUSIONS: Genistein can reduce the expression of TGF-beta1 and block the accumulation of intracellular free calcium induced by growth factors. It maybe one of the possible mechanisms of Genistein's antifibrosis effect.
-
http://www.ncbi.nlm.nih.gov/pubmed/19119629?ordinalpos=5&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

despise

Hey guys despise here. I have been really busy lately and well im trying to do more treatment for my peyronies disease. Only problem is I don't have the time to read up on all of this and catch up. Basically all im taking right now is Vitamin E 400 full spec gama beta's either once or twice a day, Vitamin D3 1000 once a day. I'm 18 with peyronies and am trying to do the best I can for it but sadly this is all I have been doing so far. What other vitamins or anything should I also be taking? I want to start taking the best oral supllements etc... I possibly can and do a lot of physical exercise. Help would be really appreciate thanks!

Iceman

can someone let me know more about LDN and if they have :
1) used it
2) the results
3) if positive where do i buy it

im needing some other meds other than pentox and others here in the forum

pLEASE!!!

Skjaldborg

Quote from: MasterShake on August 12, 2009, 10:12:08 PM
Im looking into getting L-arginine, What dosage and frequency should i take?
also, i talked to my urologist about pentox and he said he personally doesnt prescribe it, so how should i go about getting it?

Try showing your current Uro the study I have attached. It shows positive results for using pentox for Peyronie's and may help persuade him to prescribe it. Failing that, ask your urologist to refer you to someone who does prescribe Pentox.

I really have no idea why a uro would not prescribe. It's cheap, has low toxicity and much like vitamin E, it can't hurt. Some of these urologists are a real disgrace to the medical profession.

I'm not sure about L-arginine dosage. The brand I take says you can have 500 mg 3 times a day for a total of 1,500 mg/day. Hope that helps.

Best,

Skjald

Attachment deleted from this post - It can be found at this link https://www.peyroniesforum.net/index.php/topic,772.0.html

Hawk

George999

Some uros simply have a policy set in virtual stone that they do NOT prescribe off label period.  They will, however, usually be more than willing to grant a referral to a Peyronie's doc who WILL prescribe Pentox and they will have no problem at all following you up once the Peyronie's doc has given his blessing to Pentox.  I think they will be more flexible over time in this regard.  So what we need to know from MasterShake is what area he is in.  That way someone in his area can point him to a doc in his region that does Pentox.  - George

cowboyfood

Quote from: Skjaldborg on August 13, 2009, 11:21:06 AM
Quote from: MasterShake on August 12, 2009, 10:12:08 PM
Im looking into getting L-arginine, What dosage and frequency should i take?
also, i talked to my urologist about pentox and he said he personally doesnt prescribe it, so how should i go about getting it?

I'm not sure about L-arginine dosage. The brand I take says you can have 500 mg 3 times a day for a total of 1,500 mg/day. Hope that helps.


Attachment deleted from this post - It can be found at this link https://www.peyroniesforum.net/index.php/topic,772.0.html

Hawk


I'm taking 3g per day (three 1000mg tablets).  And, I actually can't defend why I take that dosage.  I'll check some older posts because that is why I picked that dosage.

That being said, Skjaldborg gave me a good idea . .. read the label.  So, I'll check that tonight.  

Also, it's time for me to reorder L-arginine, and I think I'll try the S.A.N. Vasoflow brand because of what others have posted about this brand on the forum.  

I've been ordering L-Argnine from puritanspride.com, but I'll have to go elsewhere for the Vasoflow.

CF
Currently:  L-Arginine (2g), Vit D3)

slowandsteady

Quote from: newguy on August 13, 2009, 12:13:54 AM
Interesting about it being more bioavailable in oil. I had been taking it in pill form 15 mins before taking curcumin with oil. Silly me.

To enhance bioavailability even further: mix lecithin in water, stir, let sit for a few minutes, stir again. Mix up the curcumin (2g) and quercetin (1g)  in coconut oil (2-3 tablespoons). Pour the oil mixture in the lecithin mixture and stir. You'll see the oil dispersed in the water due to the surfactant action of the lecithin. Breaking up the oil mixture into little beads should help absorption.

Hmm, perhaps adding vitamin E would help too, judging by this patent. While I'm at it, I may as well add my vitamins A, D3, and K2-MK4 (they do synergize, as we saw).

s&s

slowandsteady

Resveratrol and curcumin are apparently involved in immune system suppression.

QuoteA faulty immune response plays a pathogenic role in a wide spectrum of inflammatory diseases, including hypersensitivity responses to environmental antigens (allergic disorders), false recognition of self-antigen (autoimmune diseases) and immune attack against alloantigens during transplantation. Hence, it becomes crucial to suppress the immune system to control the damage done to the self-tissues. Even though several immunosuppressive drugs are available, their mechanism of action is still not known precisely.

These results tie in well with the auto-immune theory of Peyronies Disease that has been discussed on these forums; perhaps this is why I'm getting the relief I am from curcumin and resveratrol.

If so, curcumin and resveratrol would appear to be addressing the symptoms (reducing inflammation through immune suppression) rather than the cause (auto-immune response). This situation isn't ideal, since you'd like your immune system to be robustly attacking pathogens, not weakly attacking yourself. Low dose naltrexone has the potential to address the cause, and I'm looking forward to trying it soon.

s&s

George999

Both LDN and Vitamin D are focused on immune enhancement rather than the traditional immune suppression approach.  While I believe that this is clearly the way to go, it still remains unclear whether we can get enough mileage out of this approach at this time.  If we can, that would be clearly the better alternative.  Immune suppression risks increased vulnerability to both infectious disease AND cancers, while the opposite is true of immune enhancement.  There is currently one FDA approved immune enhancement drug targeted at MS (Copaxone), but it is so feeble as to be practically useless although many MS patients feel relief with it.  A number of new immune enhancement drugs (referred to a "small molecule" drugs) are at the threshold and at least one of them will likely be available within five years.  This is the future or autoimmune (and cancer AND infectious disease) treatments.  They work toward FIXING the immune system and not just trying to push it out of the way.  - George

MasterShake

I ordered 1000mg L-arginine pills and more natural vitamin e.  as of this exact moment I cant get the pentox, but I'm going to try calling other urologists as soon as possible, but in regards to it, how many miligrams are the pentox dosages and how frequently?

Do you guys think thers any more chance of improvement just by adding the l-arginine into my vitamin e regime?

also the dr. who doesnt prescribe pentox is dr. Sadeghi at  the Hackensack med center in NJ, and he seems to know A huge amount about peyroines.  He told me if i do get pentox and l-arginine he would like to know how it works for me tho, and have follow up appts.  Im currently in upstate NY in sullivan county, 2 hours north of nyc, and soon relocating for the semester to Oneonta NY, near albany and bighamton.  

nemo

I've got an apt with my Men's Health doctor, Dr. Mariano, in Monterey, CA in October.  He's been succesful in getting my Testosterone up and some other good things as he goes about treating what he considers my adrenal fatigue, but I'm also going to talk to him about LDN.  From what I'm reading here and elsewhere, it could be of use in addressing both my Peyronie's and my Vitiligo, which is an auto-immune skin disease.  I'll be sure to report back his thoughts on the subject.  He's a behavioral neuroendocrinologist, psychiatrist and nutritionist, so I'm sure he'll have some thoughts on LDN, the question is can I comprehend what he tells me!  

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.

Iceman

just bought some tumerick  - they say its meant to be a great anti inflammatory - lets see what happens.

slowandsteady

I trialled stopping curcumin for a day and only taking quercetin. Result: pain and inflammation started up again. But my mild sore throat cleared up.

So, despite quercetin's potentially beneficial interactions with collagen, it also upregulates the immune system. One possible conclusion (and my working hypothesis) is that it pays off more to dampen down the body's immune system than it does to address the collagen issue with quercetin. I'm really looking forward to my LDN trial.

s&s

George999

I noticed the same thing with Quercetin.  It makes allergies go away, but the autoimmune stuff gets aggressive.  - George

Iceman


stnlycp

Hi, I have peyronie's disease...have not been to doctor but I am sure I have it by viewing pictures and reading many articles. It is all so confusing and frustrating...surely for my wife as well. I understand what's going on down there but what to do is a different story altogether. I mean, should I try vitamins? Surgery? what? I know someone will say go to the doctor...I am still pondering that aspect. What works for you guys?  

MasterShake

Quote from: stnlycp on August 14, 2009, 06:07:04 PM
Hi, I have peyronie's disease...have not been to doctor but I am sure I have it by viewing pictures and reading many articles. It is all so confusing and frustrating...surely for my wife as well. I understand what's going on down there but what to do is a different story altogether. I mean, should I try vitamins? Surgery? what? I know someone will say go to the doctor...I am still pondering that aspect. What works for you guys?

nothing really "works" per say or else we' all wouldnt be here lol.
but in seriousness, theres a lot of things that people have tried. the first and most commonly used is Vitamin E treatment. Although I do recommend you go see  urologist pronto.

Also,
anyword on how much of the L-arginine I should take when it arrives? and also, what dosages and frequency should pentox be taken at? (if it helps Im 5 ft 8in tall, and am 144 pounds)

slowandsteady

Quote from: Iceman on August 14, 2009, 05:07:46 PM
so does this mean tumeick is bad?
Turmeric is the root and the spice. Curcumin is the extract from turmeric.

I don't think curcumin is bad at all. After getting vitamin D levels up, it's great for cancer prevention.

Taking 2g of it twice daily is quite a bit though, and it looks like part of its anti-inflammatory response comes from the way it affects the immune system.

George999

Lately I have been looking for a doctor willing to prescribe me low dose naltrexone.  It hasn't been easy, but I just made a real breakthrough.  I called a local compounding pharmacy and asked if they had ever heard of it.  The answer was that yes a lot of people here are using it.  So I asked which local docs were prescribing it and got a list with no problems.  Turns out a doc at my local medical group is prescribing it and also the lead doc at our local neurology practice.  Also an alternative med doc in a town 20mins away.  So if you are looking for LDN your local pharmacist might be able to give you a clue.  - George

slowandsteady

That's a great hint, George. Thanks.

bmac

First time on and looking for all advice. I live in the Dallas Fort Worth area and have been to the URO once. I have been taking 0.6 colchicine for a couple of weeks and vitamin e for a few months. My peyronies seems to have progressed rather quickly and even if it stops I still have about an 80-85 degree up curve. I have very little if any pain and erections are no problem. A sight member recommended the possibility of a referral to obtain pentoxifylline.

I am open for help.  Thanks.

ComeBacKid

Pentox has helped many people on this site.  Consider checking out our peyronies disease resource library, printing the studies by Dr . Lue and taking them to your urologist to aid in your request for pentox. Other than pentox and VED/traction there have been very few success stories with other treatments.

Comebackid

Iceman


slowandsteady

For the first time in a while, I turned on the heat pad for about 20 minutes before falling asleep (I roll it into a cylinder). My plaques were noticeably softer this morning. Perhaps with the reduced inflammation my protocol now provides, the heat is more effective. A heating pad is fairly low risk, at least when set to medium. ;)

My LDN came in today. I'm going to start tonight at 2.25 mg (a half capsule).

s&s

ocelot556

Quote from: Iceman on August 17, 2009, 06:32:52 AM
can tribulus help with Peyronies Disease???

I was thinking about starting tribulus to fix what I believe (for me) is low testosterone that compounds the difficulties I'm having with Peyronies Disease. I haven't ordered any yet, and would be interested to hear if others on this board have had any success - if not with amelioration of your plaques or curve, at least in an increased testosterone count.

MasterShake

once again. dosage and frequency of pentox? anyone please help, because my mother works at a dr's office and might be able to get the dr's to write me a script for it....

George999

400mg 3X per day.  I take mine with meals.  Its extended release and taking it with meals gives good coverage during the day when inflammation seems to be higher for me.  Also taking it with food all but eliminates side effects for me.

George999

I took tribulus for quite awhile.  I didn't notice any effect from it, but thats me.  - George