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

[MasterShake]

thank you george999

[cowboyfood]

. . . Its extended release and taking it with meals gives good coverage during the day when inflammation seems to be higher for me.  

George999 and others,

Can you describe more specifically what you mean by inflammation?  I'm thinking that it is distinguished from "progression" (worsening, despite the fact of any deformity consequences - improvement or not).  

Is this something that you feel, physically; or, something you notice visually?

CF

[slowandsteady]

For me it's when plaque areas are painful. When it happens the plaques seem harder/swollen.

[George999]

I see inflammation as driving progression.  I would agree with slowandsteady that severe inflammation causes pain and burning.  But I also believe that low level inflammation can be painless.  I also believe that the palpable "plaques" are not actually plaques, but are pockets of inflamed tissue.  I believe the actual plaques are tissue that is not distinguished so much by its thickness as by its inability to stretch and flex.  I realize that this represents a rather unorthodox view, but these are my perceptions, that inflammation as it travels through tissue in waves of "plaques" leaves behind the actual plaque that is simply trashed tissue which is no longer supple and stretchy like it once was, but is as lifeless as an old rag.  In the early stages of Peyronie's people can have "plaques" and no deformity, BUT that inflammation will eventually lead to deformity if not quickly controlled.  On the other hand, some people never have "plaques".  They experience low level inflammation and only observe progressive deformity.  This is why I believe that cranking down on inflammation needs to be the first priority for the Peyronie's patient.  This is why I so value Pentox and vitamin D and why I am rather hopeful about LDN.  Pentox is an immuno-suppressant while Vitamin D and LDN are immuno-modulators.  Immuno-modulators would be superior to immuno-suppressants since they leave other important immune functions unhindered.  But it is not yet clear whether currently known immuno-modulators are capable of sufficiently suppressing inflammation.  - George

[skunkworks]

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

Looking forward to hearing updates re LDN. What are your treatment goals though? Better erections, less curvature, diminishing of plaque size?

[newguy]

Looking forward to hearing updates re LDN.

Me too. I think the primary aim of LDN would be to reduce or elimination inflammation. If this occured then in theory at least further damage would not occur (or would be diminished) which would ensure that the condition didn't worsen beyond the damage already done. Without inflammation the body might be able to better repair the damage that has already taken place. In addition to that, the oral supplements and mechanical treatments (VED etc) would likely be better able to do their job too. I would think that pentox would be even more useful in conditions where inflammation is not continuous in nature. It' hard to repair existing damage, when the inflammatory process shows little sign of ending. If we had better control over the inflammatory phase, then there would be much less risk at exploring other options (injections etc) because if anything nasty started to occur it could be snuffed out pretty quickly.

I joined a pretty active LDN yahoo group to have a nose around. Unfortunately there are no posts relating to peyronie's or similiar conditions, so it's a bit of a shot in the dark. It is useful in a great number of autoimmune conditions though, so we're bound to learn something from trying to it. If it is of use to us it will  put us in a powerful position to be able to better deal with this conditon. If it isn't, we'll continue our search and stick with what we know.

[RichB]

Well, last week I had some pain in the groin region very similar to my first bout of what I assumed to be Peyronies Disease, and I decided to take some L-arginine and vitamin E to ease the pain and help the healing process. Well, I took 500mg of l-arginine during the day but later decided to take 1 vitamin E pill and some l-arginine before bed. Later I awoke dizzy and just feeling overall strange, and as if I hadn't even slept. Over the course of the next couple of days I started to feel very strange, my vision became "snowy," and I can't seem to focus. I am not sure what is happening and I really just want it to go away, it has happened before when taking these but it has never lasted so long. I know that in any possible way that the amount my blood pressure was lowered could not cause any brain damage or anything of the sort, but I am just worried that I have caused something catastrophic in general. Has anyone else felt this way while taking these supplements?

I know stress can manifest itself in the body a number of ways and I feel like this is one of them. Last time I felt this way, a talk with my brother made everything subside over the next day or two after talking with him. He is training to be a nurse and put some things in perspective. But I am still not sure. I just feel very disconnected. Any help or advice is appreciated.

[slowandsteady]

Pentox is an immuno-suppressant while Vitamin D and LDN are immuno-modulators.  Immuno-modulators would be superior to immuno-suppressants since they leave other important immune functions unhindered.

My thoughts exactly. I took my first LDN dose last night (about 2.5 mg). To be honest, I didn't notice much. I'll try 4.5 mg tonight. I did manage to get a prescription for it, so I'll see if how a version made by a local compounding pharmacy (this one happens to be transdermal) is different from the overseas version.

Still thumbs up on the heat treatment. This might make a difference over time.

s&s

[George999]

Well, last week I had some pain in the groin region very similar to my first bout of what I assumed to be Peyronies Disease, and I decided to take some L-arginine and vitamin E to ease the pain and help the healing process. Well, I took 500mg of l-arginine during the day but later decided to take 1 vitamin E pill and some l-arginine before bed. Later I awoke dizzy and just feeling overall strange, and as if I hadn't even slept. Over the course of the next couple of days I started to feel very strange, my vision became "snowy," and I can't seem to focus.

Rich,  I would not be too worried about this at this point.  But I would make an appointment with the doctor to discuss it.  I don't see how either Vitamin E or L-arg could cause something like this, but the vision issue troubles me a bit.  The risk is that there may be something going on that is completely unrelated to the supplements and that perhaps taking them is unmasking something that needs to be checked.  I don't think its an emergency or cause for any huge concern, but I do think it needs to be checked out.  Also if you are taking certain heart/hypertension meds, they just might interact in a bad way with the L-arg.  - George

[RichB]

Well, last week I had some pain in the groin region very similar to my first bout of what I assumed to be Peyronies Disease, and I decided to take some L-arginine and vitamin E to ease the pain and help the healing process. Well, I took 500mg of l-arginine during the day but later decided to take 1 vitamin E pill and some l-arginine before bed. Later I awoke dizzy and just feeling overall strange, and as if I hadn't even slept. Over the course of the next couple of days I started to feel very strange, my vision became "snowy," and I can't seem to focus.

Rich,  I would not be too worried about this at this point.  But I would make an appointment with the doctor to discuss it.  I don't see how either Vitamin E or L-arg could cause something like this, but the vision issue troubles me a bit.  The risk is that there may be something going on that is completely unrelated to the supplements and that perhaps taking them is unmasking something that needs to be checked.  I don't think its an emergency or cause for any huge concern, but I do think it needs to be checked out.  Also if you are taking certain heart/hypertension meds, they just might interact in a bad way with the L-arg.  - George

I actually think I may have an on and off sinus infection that has gone on for quite some time. I think I'll take your advice and get it checked out.

[skunkworks]

Just as a quick recap, recommended oral treatments include:


pentox
trazodone
viagra

l-arginine
vitamin e
vitamin d3
Acetyl L-Carnitine (ALC)

horny goat weed
maca powder
cocoa
aloe vera

possible:

low dose naltrexone

what have i missed?

[cowboyfood]

skunkworks,

I would add ALC and Vitamin D3

[slowandsteady]

I find taking pycnogenol with l-arginine makes it many times more effective. For stopping inflammation, curcumin mixed in oil is tops.

LDN day 2: I went with 4.5 mg last night. I am having the sleep disturbances people who start LDN talk about, and a little night sweating. I'm not too worried about those symptoms since they usually resolve over a couple of weeks.

My last curcumin was yesterday morning. I may be getting the beginnings of relief from the LDN already. Lately I've been having some minor finger joint pain but not this morning.

I'm going to try getting some D-phenylalanine. It keeps endorphins around longer, so may be somewhat immunomodulatory too.

s&s

[skunkworks]

I find taking pycnogenol with l-arginine makes it many times more effective. For stopping inflammation, curcumin mixed in oil is tops.

LDN day 2: I went with 4.5 mg last night. I am having the sleep disturbances people who start LDN talk about, and a little night sweating. I'm not too worried about those symptoms since they usually resolve over a couple of weeks.

My last curcumin was yesterday morning. I may be getting the beginnings of relief from the LDN already. Lately I've been having some minor finger joint pain but not this morning.

I'm going to try getting some D-phenylalanine. It keeps endorphins around longer, so may be somewhat immunomodulatory too.

s&s

From what I have read if the side effects are bothering you enough that they cannot be ignored, drop the dose for hte first few weeks. Most actually recommend starting o the 2.5 or 3mg dose and then building up.

[slowandsteady]

From what I have read if the side effects are bothering you enough that they cannot be ignored, drop the dose for hte first few weeks. Most actually recommend starting o the 2.5 or 3mg dose and then building up.

I dropped to 1.5 mg last night and slept well. I read that the mood effects of LDN show up quickly, but the autoimmune effects are optimally effective after 4-6 months.

s&s

[newguy]

That's quite a long time. Hopefully it would be somewhat incremental. If not, should it have a role in the fight against peyronie's it might be so slow at kicking in that it could partially render itself ineffective anyway. It will be interesting to see if you do start experiencing some level of relief though of course. That is my hope. I don't know how realistic that hope is though. Fingers crossed.

EDIT: For those interested in exploring LDN further, there is a very activate yahoo group relating to it here:  http://health.groups.yahoo.com/group/lowdosenaltrexone/

[George999]

I would most certainly be willing to wait 6 months for benefits from LDN.  I am willing to wait 5 years for benefits from vitamin D.  But I suspect their will be an incremental aspect.  Additionally, I think it is a mistake to focus on just a reduction in deformity and not pay more attention to the value of inflammatory relief AND potential protection from even more life threatening diseases.  I found this blog very interesting:

http://blog.impactwp.com/?p=473

One thing that makes this drug extremely interesting to me is the fact that it is known for working on a number of diseases that other extremely expensive and highly touted drugs fail at controlling.  The shear breadth of diseases that it has been reported to be helpful with gives me much hope that we will also benefit.  At this point I am just waiting for a series of MRIs followed by an appointment with a local neurologist who is known to support the use of LDN.  I am thinking that I may be able to actually get off the Pentox and shift completely over to LDN at that point, but we will see how that works out.   - George

[newguy]

George - LDN certainly appears to be hold promise in a vast number of autoimmune conditions. We can only hope that it is of use for peyronie's. I'm sure its positive use for us is an question that wll eventually be answered, and I really do hope that it works. I could've perhaps of phrased my previous message better. My concern was that 4-5 months is a long time for inflammation to be occuring for, and as such if LDN does work but takes that long to reach its full potential, for many men it may well mean that it's actually too late to prevent serious damage from occuring. Of course this is all guesswork, but that was my concern. If it works at all for peyronies that would of course be something I welcome.  

[slowandsteady]

That's quite a long time.

Well, that's for "optimally effective". I expect to get relief before that. I've been able to taper off my curcumin to about 750 mg.

Some quotes from the yahoo group:

I had RA for almost 11 yrs. I have not had any medication in the last 4 yrs. I started LDN on March 2nd. I took 1.5mg for 2 weeks and I did great, mainly the stiffness was significantly less.

I've been on LDN for only two weeks, but am having less pain. I have fibro + CFS with some thyroid issues thrown in.

I have been taking LDN for two weeks for CFS; I have had great improvement in myhealth.

Ive been on LDN for about two weeks [for multiple sclerosis] and I am thrilled. I no longer wake
up with that awful pain in my legs and feeling like the tin man.

The bottom line is that after only 2 weeks on ldn,I have a quality of life.[person with MS]

So it looks like there can be a great response after two weeks followed by peak improvement after 6 months. Here's hoping.

s&s

[George999]

I agree completely.  There has to be effectiveness against inflammation immediately for this to be of value.  From what I know about the way it works, I would be surprised if it does not achieve this handily.  All these other things it is being used for are inflammation driven and it is getting a lot of rave reviews.  I see no reason why it wouldn't be just as effective against Peyronie's inflammation, but I guess there is always the possibility of an exception to the rule.  But lets indeed hope it does for us what it is doing for so many others.  - George

[young25]

I bumped on the article somehow, seems interesting but is a Rx type 2 diabetic drug

http://www.ncbi.nlm.nih.gov/pubmed/16831155

http://www.biomedexperts.com/Abstract.bme/18445362/Effects_of_pioglitazone_on_erectile_dysfunction_in_sildenafil_poor-responders_a_randomized_controlled_study

[George999]

This does not look like something particularly useful for Peyronie's to me BUT it does look like something potentially VERY useful for corporal fibrosis, and thus is a real cool find.  Anyone with a corporal fibrosis problem should be looking closely at Low Dose Pioglitazone.  Since it is seemingly a custom low dose formulation, it would probably have to be formulated by a compounding pharmacy.  The trade name for the base drug is " Actos".  Its a relatively new "on patent" drug meaning it is likely expensive, but certainly, an off label prescription might be possible. - George

[slowandsteady]

A quick update on the LDN. I'm finding that half the contents of a 4.5 mg capsule to be a nice dosage. I'm still adjusting to it's effects at night with the lighter sleep and more vivid dreams. As long as I don't short change my self on sleep hours I feel fine the next day. On doses of 3mg and up I feel a bit blah the next day, so that might be indicating a bit too much antagonism of my opiate receptors.

I had some inflammation yesterday, but I think that's because I dosed 2g of ALC; perhaps I just don't need that much. No inflammation today.

One nice benefit: my recovery from exercise is noticeably quicker. I'm building up my push up numbers, and I was only a little sore the day after I added more to my total. Maybe when one's body isn't so busy fighting itself it has energy left over.

My mood is subtly enhanced too, which is quite nice. I'd be willing to bet that low endorphin levels are correlated with Peyronies Disease.

s&s

[cowboyfood]

George999 and others,

What oral treatments should be used to keep down or eliminate inflammation, and should they be used when one is not experiencing inflammation?

CF

[newguy]

slowandsteady - Thanks for the LDN upates.  It sounds like it's giving you some benefits already (exercise recovery etc). In your view is the jury still out on its effectiveness for peyronie's? I want to get a few solid opinions before going down this route myself. Being that the forum structure has made it a possibility, maybe we should create a Low Dose Naltrexone thread?

I can't help but notice that you've mentioned a couple of times now that ALC has possibly been the cause of inflammation for you. I wonder if this is common at doses at that level. Do you take it with Alpha Lipoic Acid?  

[George999]

George999 and others,

What oral treatments should be used to keep down or eliminate inflammation, and should they be used when one is not experiencing inflammation?

CF

My personal opinion on this is that IF you have Peyronie's, you HAVE an inflammation problem whether you are experiencing pain or not.  And personally, I think the major keys at this point are 1) vitamin D3 in softgel form.  I would get vitamin D levels tested and boost vitamin D levels up to 50-70ng/ml UNLESS you also have known prostate cancer issues.  In any case, IF you do work on getting your vitamin D levels up, I would watch the vitamin D level with periodic testing, watch serum calcium levels with periodic testing, and watch PSA levels with periodic testing.  I would also get a traditional prostate exam before and during.  Some of us around here are more concerned about vitamin D possibly promoting prostate cancer than others.  I am less concerned than most.  I think there are other factors involved in aggressive prostate cancer that we should be more concerned about such as:  Obesity Tied to Prostate Cancer Recurrence  But it is an issue, so be forewarned.  There is that risk, but I believe there is a greater risk from having depressed vitamin D levels.  50-70ng/ml is the typical reading found among people who get plenty of sun and I believe that level represents what should be the norm.  There is a lot of disagreement on this right now, but there is more and more evidence that vitamin D is hugely anti-inflammatory and is an immuno-modulator which is the best tonic for a failing immune system.  2) Pentoxifylline.  I really believe that at this point Pentox is still pretty much the gold standard when it comes to anti-inflammatory treatments for Peyronie's.  It is an immuno-suppressant that is very effective at knocking down the inflammation associated with Peyronie's.  I highly recommend it.  It is safe, easy to take, inexpensive, with few and mild side effects.  It has a long and proven track record as a drug.  I really can't say enough good things about it.  Some will have a problem with it because if you have major immune deficiency problems you will likely have problems with any immuno-suppressant.  As for the future, I believe that LDN is promising since it is pretty much a proven immuno-modulator that is showing itself effective in dealing with a number of auto-immune diseases.  Additionally, it is being shown useful in treating infectious disease (HIV/AIDS) AND cancer.  But at this point we know nearly nothing about its actual impact on Peyronie's which a handful of guys on this forum are currently exploring.  So you will also want to key an eye on that one.  Those are the major oral options out there right now.  Of course I could add to the list a string of bit players from ALC to Mangosteen juice etc.  That list is endless and different things on that list will likely prove helpful to different people.  But the same thing that helps one person might not help another.  That is why I favor the use of vitamin D and Pentox.  - George

[Hawk]

I had some inflammation yesterday, but I think that's because I dosed 2g of ALC; perhaps I just don't need that much. No inflammation today.

What would lead you to consider ALC an inflammatory.  That seems to be contrary to research and most anecdotal accounts here.

[Hawk]

personally, I think the major keys at this point are 1) vitamin D3 in softgel form.

Why do you put that much stress on gelcap form?

[George999]

personally, I think the major keys at this point are 1) vitamin D3 in softgel form.

Why do you put that much stress on gelcap form?

Because I have read accounts by doctors complaining that they were unable to get patients blood levels up with the dry form and thus consider it to have problems with assimilation.  I think that is a serious red flag.  I also think the fact that so many people are on fosomax after years of taking dry D with calcium indicates that something is wrong with this approach.  It has always been attributed to lack of assimilation on the part of the calcium, but I suspect the real problem was that patients were not assimilating the dry D which led to problems assimilating the calcium.  I definitely do not trust the traditional dry form of vitamin D to be biologically available and thus warn people to use the oil based softgels instead.  - George

[George999]

I had some inflammation yesterday, but I think that's because I dosed 2g of ALC; perhaps I just don't need that much. No inflammation today.

What would lead you to consider ALC an inflammatory.  That seems to be contrary to research and most anecdotal accounts here.

I have had similar experience with ALC.  Mainly it seems to be anti-inflammatory, but at times its seems to do just the opposite.  I used it successfully for years, but consider Pentox to be a lot more reliable.  I would not discourage its use, I believe it is generally helpful, but would caution users to be aware of a possible underlying Jekyll and Hyde factor in rare cases.  - George

[Hawk]

I have used over 3G of ALC daily and have been far more on-again off-again with ALC than I am most supplements.  I have never seen anything out of ALC except clear indications of its ant-inflammatory effect.  I have only seen documentation from clinical trials that it mitigated inflammation in everything from heart, arterial, peyronies, muscular, and induced inflammation in rats.

I would have to believe ALC preceding inflammation had nothing to do with that inflammation.  I think it is far more likely that the inflammation was the result of a subtle unidentified environmental, dietary, or internal agent or process that was independent of ALC (possibly even held in check by the ALC)

[George999]

Hawk,  I certainly don't question your experience.  But I am reporting my experience and you can doubt it or try to explain it if you like.  On multiple occasions I experienced a relief from inflammation when stopping ALC.  Now that may represent multiple coincidences, I really don't know.  But I have had no such experience with Pentox and thus view it as being more dependable from my own experience.  If someone is getting benefit from ALC, I would certainly recommend they keep on using it, but if things start to go down hill, I would recommend that they try to shift over to Pentox.  But you are certainly correct in stating that there is not a shred of objective evidence to indicate that ALC might be inflammatory.  Not a shred.  - George

[Hawk]

George, I do not doubt your experience in the least.  I do doubt your conclusion in this instance and I generally doubt the established unreliability of anecdotal accounts.  Because of the millions of unidentified issues that impact our bodies, anecdotal accounts as you know are unreliable. Hundreds of posts keep reminding us of that.  It is obvious that we are oblivious to these millions of variables that impact upon our bodies daily.  We seldom even put stock in a clinical trial with small groups for that very reason.  If assessing "A precedes B so DOES A cause B" were that easy to conclude, research would be child's play.  

I certainly would trust my own observations, but I would never ever trust my own conclusions that ALC is anti-inflammatory just because it seemed so to me.  For that conclusion I would have to find supporting evidence to evaluate and that is all I was looking for in this case.

We always have to force ourselves to go back to objectivity and evaluating hard evidence as summarized on our PDS web Site.  It cannot be read in its entirety too many times.(Thanks in large part to Tim) http://www.peyroniessociety.org/evaluating.htm

I view it as one of the main purposes of this site to help the thousands who come here to step beyond the old subjective traps that muddy the evidence and deepen the mystery of Peyronies Disease.

[cowboyfood]

George999 and Hawk,

Your responses are appreciated.  

As I've posted before, my daily intake includes Pentox (1200 mg), D3 (but, dry not softgel), ALC, L-Arginine, Isomer Vitamin E (GNC) and Viagra.

My urologist's office is doing a blood test for me soon (the P.A. told me that, generally, many uros prefer one's "general" physician to do this or someone else).  They are going to test testosterone levels at my request.  I'll see if they can check Vitamin D levels, I'll bring in a hard copy of your previous post regarding this.

I'll switch to D3 softgel; I saw only 5000 IU available at puritan's pride.  But, here is a lower dosage by Jarrow at Vitamin Shoppe: http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=JF-7339

CF

[slowandsteady]

What would lead you to consider ALC an inflammatory.  That seems to be contrary to research and most anecdotal accounts here.

I get pain with 2g. I wonder if it's better taken when one isn't having pain. Perhaps 2g for me is on the other side if the U curve. How much do you weigh? I'm at 145 with about 12% body fat.

[cowboyfood]

George999,

based on your reply, it sounds like I (and, others) should assume we are in an inflammatory state.  This sounds like a wise and "aggressive" viewpoint in my opinion, and one that I agree with.

In my own case, I don't understand how I can tell whether I am literally in an inflammatory state or not.  

Are there any traditional symptoms of inflammation?  I'll guess that pain and discomfort are symptoms.  But, they are also symptoms from the VED treatment (from "overpumping").

CF

[George999]

I'll switch to D3 softgel; I saw only 5000 IU available at puritan's pride.  But, here is a lower dosage by Jarrow at Vitamin Shoppe: http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=JF-7339

Now Foods produces D3 softgels in 400IU, 1000IU, 2000IU and 5000IU potencies.  - George

[Hawk]

I saw only 5000 IU available at puritan's pride.  But, here is a lower dosage by Jarrow at Vitamin Shoppe: http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=JF-7339

Cowboy, just go to Puritan and type D it the search box.  It takes you to this page http://www.puritan.com/d-vitamins-534?searchterm=d&rdcnt=1 Puritan has 400 IU, 1000 IU, 1200 IU, and 5000, IU  gel caps all on this page.  Right now they are running their best buy one get 2 free sales.

[newguy]

cowboyfood - Since many men experience sudden curvature without any symptoms of pain I think it's safe to say that it's possible to have damaging low level inflammation without ever being aware of it. This makes sense as people experience all kinds of health problems due to inflammation without necessarily being in noticable pain. It therefore follows that it's possible that those who experienced pain from peyronies and are now pain free are not actually inflammation free. With this theory in mind I think it's useful to stay on an oral treatment regime even after symptons of pain are gone. At least for a while. Please don't take this to mean that I think that men with peyronies 'always' suffer from inflammation, as it seems to be the case that for the majority of men their condition eventually stabalises after a period of time.

[George999]

Are there any traditional symptoms of inflammation?  I'll guess that pain and discomfort are symptoms.  But, they are also symptoms from the VED treatment (from "overpumping").

In other inflammatory syndromes where reversal has been achieved it has been through extremely aggressive anti-inflammatory therapy.  Thus I am assuming that a continued fibrotic state is indicative of low level inflammation.  - George

[George999]

Hawk,  Let me put it this way.  If someone is taking ALC and having pain, then obviously the ALC is not doing the job regardless of what the objective data shows.  So at this point it is time for them to move on, and Pentox is the obvious choice.  - George

[Hawk]

Hawk,  Let me put it this way.  If someone is taking ALC and having pain, then obviously the ALC is not doing the job regardless of what the objective data shows.  So at this point it is time for them to move on, and Pentox is the obvious choice.  - George

George you know better than make that conclusive statement.  Why do trials have controls?  Because the control group could exhibit the same, a better, or a worse response than the study group.  You can conclude ALC did not stop the inflammation at that dose for that duration.  You cannot however conclude that it did not reduce the pain over what it would have been and you surely cannot conclude it caused the pain.

[slowandsteady]

slowandsteady - Thanks for the LDN upates.  It sounds like it's giving you some benefits already (exercise recovery etc). In your view is the jury still out on its effectiveness for peyronie's?

Still too early to say. Things should be more clear by the middle of next week.

[skunkworks]

Are there any traditional symptoms of inflammation?  I'll guess that pain and discomfort are symptoms.  But, they are also symptoms from the VED treatment (from "overpumping").

In other inflammatory syndromes where reversal has been achieved it has been through extremely aggressive anti-inflammatory therapy.  Thus I am assuming that a continued fibrotic state is indicative of low level inflammation.  - George

Which conditions? Do you have a link to any write ups of such a reversal?

What did they use to fight the inflammation?

I always thought that in the case of auto immune diseases, the inflammation was a symptom of the disease rather than the disease itself.

[Hawk]

I always thought that in the case of auto immune diseases, the inflammation was a symptom of the disease rather than the disease itself.

I think your understanding was always the assumption but in recent decades research has indicated more and more that inflammation is, or at least triggers, many diseases rather than simply being a symptom of the disease.  Interestingly enough it seems to be the root of both coronary disease and cancer along with a host of autoimmune diseases.

[George999]

Inflammation is produced when the body's immune system damages the body's own tissue.  To some point this is inevitable as the immune system does its job.  But when the immune system is not appropriately focused in its attacks, body tissue suffers excessive damage.  This is what is referred to as the autoimmune factor.  In order to stem this damaging process, the traditional treatment has been to suppress the immune system.  This has the effect of relieving inflammation, but it also leaves the body more vulnerable to things the immune system is designed to deal with from alien invaders (viral, bacterial, parasitic, fungal, etc) to the body's own deviant cells (cancer, etc).  Thus a better approach is to refocus the immune system which is the point of vitamin D, LDN, and a number of what are referred to as "small molecule" drugs currently making their way through trials.  Suppressing inflammation by either method slows or stops the progression of the disease.  If the suppression is sufficient, actual reversal can occur.  - George

[George999]

Hawk,  Let me put it this way.  If someone is taking ALC and having pain, then obviously the ALC is not doing the job regardless of what the objective data shows.  So at this point it is time for them to move on, and Pentox is the obvious choice.  - George

George you know better than make that conclusive statement.  Why do trials have controls?  Because the control group could exhibit the same, a better, or a worse response than the study group.  You can conclude ALC did not stop the inflammation at that dose for that duration.  You cannot however conclude that it did not reduce the pain over what it would have been and you surely cannot conclude it caused the pain.

Hawk,  You are making precisely the mistake that most medical professionals make by assuming that current studies are conclusive which is almost never the case.  I don't know how many times new research has literally upended previous research and what doctors knew was ultimately proven to be not quite the case.  Medical knowledge is continually being refined and nuanced by new discoveries.  I, for one, am not going to stand by and try to tell myself that something is working when it obviously is not and neither do I recommend that approach to anyone else.  The results of well designed medical studies are strong evidence but they are not ultimate knownlege and even objective data show Pentoxifylline to be many times more capable of dealing with Peyronie's than ALC.  I respect the capabilities of ALC.  I was on it for years and was greatly benefited by it, but there came a time that I had to move on to Pentox because it was aggravating my neuropathy.  Anyone dealing with a problem with ALC should know that there is a way to move on to something else that can resolve their problem.  Just like people who are having a problem with Pentox need to know that it does suppress the immune system and that vitamin D might be helpful to them in both directions.  - George

[George999]

In other inflammatory syndromes where reversal has been achieved it has been through extremely aggressive anti-inflammatory therapy.  Thus I am assuming that a continued fibrotic state is indicative of low level inflammation.  - George

Which conditions? Do you have a link to any write ups of such a reversal?

Lets look at some examples:

Reversal of cardiac fibrosis and related dysfunction by relaxin.

Renin-angiotensin inhibition reverses advanced cardiac remodeling in aging spontaneously hypertensive rats.

Mini-dose of thalidomide for treatment of primary myelofibrosis. Report of a case with complete reversal of bone marrow fibrosis and splenomegaly.

Reversal of fibrosis: no longer a pipe dream?

Reversal of chemical-induced liver fibrosis in Wistar rats by puerarin.

Halofuginone induces matrix metalloproteinases in rat hepatic stellate cells via activation of p38 and NFkappaB.

Reversal of allergen-induced airway remodeling by CysLT1 receptor blockade.

This list could go on endlessly.  The point is that if you sufficiently block the inflammation, tissues do heal.  Its a slow process, but it does happen.  The hard part is finding ways to block stubborn inflammation without causing dangerous side effects.  - George

[newguy]

This list could go on endlessly.  The point is that if you sufficiently block the inflammation, tissues do heal.  Its a slow process, but it does happen.  The hard part is finding ways to block stubborn inflammation without causing dangerous side effects.  - George

I agree. If peyronie's sufferers are able to get a handle on the inflammation right away, in terms of either knocking it out completely, or reducing it to something the body is better able to deal with, it stands to reason that they will be in a much better position. As you rightly say there is a balancing act between trying to deal with this issue and ensure that the body doesn't become suseptable to other health problems. What we have on our side in such a scenario is the fact that if the right drug comes along we'd probably only need to knock out inflammation for a finite length of time to allow normal healing to take place, and so this window of opportunity for other health problems would be relatively small.

There are likely issues that could make my reasoning invalid (maybe "reducing" a trapped inflammation, if that's what peyronie's is, simply means that it will exist at a lower level of severity but nevertheless will not stop until it's "burned itself out" etc) but hopefully they don't hold true in reality.

[George999]

If peyronie's sufferers are able to get a handle on the inflammation right away, in terms of either knocking it out completely, or reducing it to something the body is better able to deal with, it stands to reason that they will be in a much better position.

There are likely issues that could make my reasoning invalid (maybe "reducing" a trapped inflammation, if that's what peyronie's is, simply means that it will exist at a lower level of severity but nevertheless will not stop until it's "burned itself out" etc) but hopefully they don't hold true in reality.

It is abundantly clear that chances of reversing Peyronie's are far greater when it is identified and treated aggressively in its earliest stages.  That is what is so frustrating with the typical "wait and see" approach.  I think that if Pentox was prescribed at the get go we would see a lot of Peyronie's cases cured.  Once the disease progresses you have "trapped inflammation" as you describe it.  It is low level inflammation within the fibrosis and it is extremely difficult to deliver enough medication to it to be effective.  Delivery of therapeutic medication is dependent on blood flow, and when it is severely compromised it becomes very difficult to accomplish.  At the same time, you can have a deficiency of vitamin D in these tissues even though vitamin D levels are normal on a systemic level.  Inflammation consumes vitamin D and if it is being consumed faster than it can be delivered, you can have localized pockets of vitamin D deficiency.  At the same time, lack of vitamin D promotes inflammation.  That is why it is important to saturate surrounding healthy tissues with vitamin D to the maximum safe level.  - George