October 1, 2015 PDI Newsletter
Greetings to all,
This month we will once again look at a recent email sent by one of our PD/DC warriors, and my response to him. Using emails in this way is popular because people like the conversational tone of these detailed exchanges that focus on natural PD or DC treatment philosophy and the practical application of those ideas.
Because we all use spam filters on our email accounts I had to edit the content of this email from EBXXXXX more than a little. He naturally and appropriately uses the words P_ _ _ S, INTERC_ _ _ _ E, and S_X several times in his emails. If I used those words in this newsletter as many times as he writes them, none of you would receive this newsletter; just one or two of these words brands a document as undeliverable. To avoid this problem I have replaced the “P” word with SHAFT, the short “S” word with PERSONAL RELATIONS and other appropriate substitutes that made his meaning clear while not triggering anyone’s spam filter.
You will see that EBXXXX is a man who must deal with two excess collagen soft tissue problems – Peyronie’s disease (shaft) and Dupuytren’s contracture (both of his hands). He has done fairly well so far, but he wrote to me because he doubts he can make more progress. In this discussion all treatment ideas apply to either problem since they are similar, except location in the body, so no matter which problem you might have this newsletter should present ideas that can be helpful to you.
Additionally, for those who are in our DCI readership who are playing with the idea of surgery, please note the history EBXXXX gives. He reports that both his mother and an uncle had failed hand surgeries, and that his mother eventually had an amputation of her little finger. I suppose this is why he is so keenly interested in using natural Alternative Medicine concepts to overcome his PD and DC; he has seen firsthand how limited and problematic this kind of surgery can be. I find that many people limit themselves to “just” 2-3 hand surgeries not because after the 2nd or 3rd surgery they are well and the Dupuytrens is finally eliminated or corrected, but because by the 2nd or 3rd surgery they finally come to understand they are getting worse after each surgery; they simply refuse to have any more surgery for fear of more pain, more scar formation, more numbness, more weakness, and more loss of function. The other reason is that sometimes by the 2nd or 3rd surgery the surgeon has simply run out of normal tissue to work with and cannot do anymore surgery, other than amputation.
People with Dupuytrens get started with these hand surgeries thinking they will actually solve their problem, and only learn later that Dupuytren’s contracture is never solved by surgery because the hand contractures will ALWAYS come back given enough time; surgery gives only a temporary reprieve from the problem, often 1-5years, followed by a return of the problem that is always worse than before the surgery. (The same can be said of Peyronie’s surgery – the PD scar formation will return in time.) Even so, I am not completely anti-surgery for DC or PD; I am anti-rushing-into-surgery. I say, explore and completely exhaust every natural and non-surgical treatment option for as long as possible before even considering surgery. There are many advanced and complicated natural treatment options to explore that I do not discuss on the PDI and DCI sites because too many people would be using them too early or inappropriately. Just keep in mind that the list of things you can do to help yourself is a lot longer than you realize, and you just need to give your tissue the time and opportunity to heal.
Read these two combined email likes the back-and-forth discussion of two people talking when one occasionally interrupts the other to make an important point or answer a question. To understand the flow of the conversation, keep in mind that the text in black is from EBXXXX and the text in red is from me.
On Sept. 16, 2015, at 11:31 AM, Dr. T. Herazy wrote:
Greetings EBXXXXXXX,
See below for comments… Regards,
Theodore Herazy, DC, LAc
Peyronie’s Disease Institute
Dupuytren’s Contracture Institute
From: EBXXXXXXX
Sent: Tuesday, September 15, 2015 8:22 PM
To: herazy@comcast.net
Subject: DC and PD
Dr. Herazy,
Thanks for the last newsletter, they are always appreciated each month because I need all the help I can get as I am one of those lucky people who has both DC and PD. 2 years ago I found your website when I was looking for help because I know how fouled up your life can get when you have severely bent fingers. I wanted to see if anyone was using natural methods to treat Dupuytrens and was happy to find you, and the DCI site led me to the PDI site.
After reading a big part of your website, the “PD Handbook” plus “Peyronie’s Disease and Sex,” and two years worth of PDI newsletters I think l have a pretty good idea of what you are going to tell me as answers to my qustions, but I have to ask because I want to be sure. I have made more improvement than I hoped for when I finally started to work with your system like you describe even though I started out not using your products or doing it your way. Even though I was skeptical when I first found DCI I started to use some of the ideas you mentioned about vitamins because I did not see anything else out there that I could use that might help me. I thought, what the heck. But I thought I could help myself by doing bits and pieces of your ideas and found it did not work. After a few months I got desperate enough to do it the way you suggest. Since getting on the big PD program my hands have improved and the personal relations with my wife are coming back because my PD is better, and now that it is working I want to make sure I get as much progress as possible so I can be normal again.
First some background. My Norwegian mother and her two brothers all had Dupuytren’s in both of their hands. One of my uncles also had hard lumps on the bottom of one of his feet that made him limp, although no one ever said anything about him having something as personal as PD. When I was a kid I remember my father complaining sometimes that his fingers were stiff and tight, but he died when he was in his mid 40s, so I do not know much more than that about his situation regarding DC or PD so maybe he had it but I can’t say. That’s why I think I have a serious heredity issue going on. I am almost 60 and because I play the piano and guitar professionally on the weekends and practice a lot I am always working my hands heavily. About 9 years ago I started to notice a dense button of tissue in both palms (left definitely worse) that were located near the base of the ring fingers, and thin cords has been slowly growing on each ring finger and my left pinkie for the past few years. Lately I think I am seeing knuckle pads starting on fingers 2-5 on the left hand and 3-5 on the right. At first the dense button tissue on the palms looked like a callus and did not change or bother me much, but for the last 18 months both are getting thicker each month especially the left. Fingers 4-5 have started to pull down toward the palm and ache. My family doctor had me see a hand specialist who wants to use either Xiaflex or a needle plication, he has not decided which way to go. I do not want to start cutting or sticking them because I am really worried about the complications, side-effects and the lumps coming later anyway. My mother and an uncle both had a few surgeries that had bad results (my mom eventually had her pinkie amputated) so I do not want to get involved that way if I can keep from it. Too bad DCI was not around for your mom and uncle. Oh, well. I hear many stories like yours of a strong genetic predisposition that when coupled with a history of prolonged hand stress can trigger a case of DC; I have noticed over the years that musicians who hold their hands tense and tight for hours at a time are very prone to DC. It would be good for you to re-evaluate your playing technique with both instruments and try to learn how to keep your hands looser and more relaxed while you play. No matter how relaxed you think your hands are, try to loosen them up even more as you play. Based on my family history I know how my problems would be going if I was not using your ideas and products, so I want to do all I can to keep my progress going in the right direction.
My PD began almost 5 years after an injury during private relations when I slipped right out of her during orgasm while she continued to thrust down on me and bent my shaft on her pelvis. The pain was unbelieveable at first and slowly got better over a few weeks but was still pretty strong at times. A few months later I found a lump right where I got folded over. Pretty soon an upward bend started where the lump was and a little later I started to get shorter until now I am almost half the size I was the PD started and the pain has reduced some when I get hard. When I get erect I found at the base of the shaft a group of 4 or 5 nodules the size of peas that felt hard like a pencil eraser that are laid out like a belt around the area where I get narrow. Probably the most difficult scar pattern to study and monitor is the “overlapping nodules” or “string of pearls” that you describe. A large single mass of tissue is much easier to monitor. But you have to work with what you have. Keep on evaluating the tissue every 7-10 days and you will likely notice that the mass of small lumps should eventually seem like they are separating from each other as they get smaller; this should help you to understand their size, shape and density as well as how they are laying in relation to each other. I had a similar formation when I had my PD in which three scars were layered half on and half off each other, making it very confusing to picture what was going on below the surface. The real difficulty arises because you will see that eventually each one will respond at a different rate and in a different way. Just hang in there and use your imagination to follow the changes and write down your descriptions so you will be able to compare the tissue later. The shaft diameter at this point was also slightly reduced or narrower and went into an upward 80 degree bend started. I got hard enough for entry only sometimes before treatment started but now that is better. I also had a dull ache when erect that became sharp during any kind of personal relations, and that is also better now. Your description of your PD and subsequent progress is typical. My family doctor first prescribed vitamin E, and then POTABA, but neither of these made any difference to my PD. By itself vitamin E does not often make much difference to these two problems. As for the POTABA, a drug that is similar chemically to PABA, a vitamin, I can only say that most men’s stomach’s get too upset by the drug to use it for very long. I suppose this could be the reason I have not run into anyone who has used POTABA with much success. PABA does not irritate the gastric lining and works well in anyone’s DC or PD plan. As I mentioned above, it is essential to use multiple natural therapies – not just vitamin E. MDs are fond of suggesting vitamin E because of the good research reports that it was initially given, but they fail to know anything about how to use it correctly. Most give no specific advice how to use vitamin E, they just say to “take one or two a day.” If you follow the recommendations for using the vitamin E you will find on the PDI and DCI websites you will get much better results than if you use the inferior grade products sold at the average vitamin shop or drug store. I had my doubts about using vitamins and the other things you say to use because the vitamin E I used under my MDs orders did not help me, so I dabbled with ideas I got from your books by making a few changes to my diet and tried taking acetyl-l-carn and PABA I got at GNC on my own without knowing how to do it. While I was doing these things my DC and PD kept getting worse. A little later after that I read on one of the PD forums where some of these guys were using serracor so I stopped the l-carn and PABA and took some serracor for awhile, but that got me nothing because I was guessing how to use it like I guessed with the other things I did. I am not a big fan of Serracor because I have not run into any independent person who has used it with success; I have found many people who get great results have used Neprinol. Your lack of response was obviously because your small “a little of this and a little of that” effort did not cover enough of your nutritional needs to encourage a good response from your immune system. You were playing around with the DCI and PDI ideas; you were dabbling rather than treating yourself aggressively. There are NO ONE OR TWO THERAPIES that are going to make a difference to Peyronie’s disease or Dupuytren’s contracture. It is good that you made dietary changes, but it is essential to also simultaneously use a broad range of several internal and external therapies to get ahead of these multiple problems you have. The dietary part of treatment is extremely important, but that by itself will probably not help the average man. Over and over again I see that it is necessary to aggressively throw a large group of different internal and external therapies at Peyronie’s disease to make a difference. How much therapy? Which therapy? No one can answer that for you. You must figure the specifics out for yourself; do the work of treating yourself, then watch and compare the structure of the fibrous tissues of the shaft and hand while observing for changes that signal you are using the right dosages and combinations. Only then while you are working with your problem using the group of therapies you have selected will you know how your shaft and hand tissue responds in terms of changes in the size, shape, density and surface features of the different fibrous tissues. We begin with an idea of what might work, and then carefully observe and compare in miniscule detail the fibrous tissue to look for positive changes that prove your tissue is responding. I have recently written a very helpful two-page outline of how this approach is put into action. I hope you have read this paper carefully because it is the best description I have ever done that explains the basic steps clearly.
When I got discouraged after I realized my GNC approach was not working I read the “Peyronie’s Disease Handbook” for a second time because I started to feel guilty that I was failing my wife who never complained. So about 10 months ago I finally got serious about these two problems of mine. I ordered the large PDI plan and really studied the notes that came with the order. I also started to use that staggered way of taking Neprinol you told me about when we spoke once on the phone. The first thing I noticed after a week on the large plan was that my painful erections went away which was a real blessing. Maybe by the 6th or 7th time I increased my enzymes and support therapies I was pretty sure the chain of lumps at the base were fading away meaning they were getting both smaller and softer. I am making the plan more aggressive by pushing more increase of the enzymes by mixing in Inflamazyme and Serracor into the mix with the Neprinol. Each time I increase the number of one of these up by one every week. I also got the stretching video and really think it is helping me because I feel that dull ache most of the time when I am hardly do anything to stretch my shaft. I hardly press down and out and something deep down feels achey. It is really a weird experience to be hardly touching yourself yet feel so much response. A light touch is the way to go. You can also use the same video about stretching the PD scar to learn how to stretch the DC cords and nodule tissue. The information crosses over nicely, so you can do that also for your hand although it is rare to feel any ache in the hand. When working with the shaft, do not get careless or over-confident. Some men get sloppy and change their technique over time without realizing it, by gradually changing how they use the technique by adding too much force and then wonder why they cannot feel a response. You are describing a good level of progressive treatment that should continue to promote nice tissue changes and good results for you. Small and occasional effort does not seem to get results for anyone with PD or DC. Since I started on the large plan 10 months ago like you describe on the websites my hand situation has improved, the lumps on my hands are smaller and softer, and I have gained almost ¾ inch of movement of my ring fingers toward my palm and maybe more than that on the right. The lumps at the base of the shaft are not so easy to locate and they are softer like overripe grapes. Even the narrowing of shaft is improved a little and my wife thinks I am regaining some size. The reduced pain and reduced bend of your shaft are due to the reduction of your scars that no longer press on the layer of tissue known as the tunica albuginea. As the scar material becomes smaller and weaker your body should return to a more normal appearance and improved function. Please do not make the mistake of only paying attention to the more obvious appearance of the shaft. Pay close attention instead to the internal structure of the fibrous material, or in the case of your hands, pay attention to the structural condition of the cords and nodules. The distortions of the shaft and fingers you see are only a partial reflection of the fibrous material you do not see. As you shift and modify your plan looking for the combination that makes most tissue changes please make notes of what will happen to the size, shape, density and surface feature of your scars and the ability of the palm nodules to move around under pressure. If you do not know what I mean by this please send me an email and I will explain this important point to you. It is critically important that every 7-10 days that you makes notes about what you are doing and what changes you observe in your body in order to learn how to fine tune your plan. This is a very scientific way to determine the “cause and effect” of good DC and PD treatment. This is how everyone who has improved their DC and PD has done it. For some reason some people will fight and ignore this basic strategy and then wonder why their condition does not improve. There are no easy answers, quick fixes or magic bullets to get out of the trouble you are in; it is all hard work. I wish it were some other way. I know I have more work to do because the curve is still at 30 degrees but with better quality erections I am almost able to perform like I used to. Your appearance (size and bend) should improve as your internal scar structure changes. You have seen both start to happen already. With continued effort there is no reason I can see to think that your tissue should stop responding.
But now my problem is that for the last month or more I have not noticed any new progress or changes in my shaft or hand when I do my 7-10 day evaluations and increases. I have now made at least 4 or 5 different changes and none of it has made any difference. I am stuck because nothing seems to be working lately every is the same and I do not know what to do to get things going again. OK, you made 4-5 changes recently and your plan still is stalled, but you are stalled with smaller scars, less curvature and fingers that bend more than before. That is good. And that might be all the change you will ever make, but you will never know unless you try harder to make additional changes. How long you try to do that is totally up to you, but I have never seen a truly stalled situation go on for longer than 8-10 weeks. But be careful because I have also found that a lot of people merely think their progress has stalled, only to find out later that they were just not careful or accurate or sensitive enough to detect small tissue changes that were going on unnoticed right under their noses. You have to be accurate and detailed with your evaluation so you do not miss tiny evidence of progress – that is proof that your plan is actually working. Right now you just need to figure out how to get things moving again. Stalls can be deep and prolonged for reasons I cannot explain. They do not happen to everyone; some people never stall; everyone one seems to be different. Some stalled treatment plans take just a small increase of only one or two therapies, while other stalled treatment plans require a lot of extra time and complicated alterations of the basic plan to put back on track. No one can tell you which group you belong to, but you do know when your current plan stops being effective you must change your plan. I think the best strategy is not to change everything you are doing, but to change little things; keep the basic outline of your plan that brought you to this current level of success, but carefully and slowly modify it in small ways. As I often say, “Do not get off a winning horse.” Or in your case, “If your horse was winning, but he is not now winning, be careful what you do to him lest you change too much and he no longer resembles that winning horse.” Sometimes – and this might apply to you – we are simply over-eager and we expect too much too fast, especially when we get our hopes up because we have seen progress. We expect progress to continue and even increase – and never slow down – and that can be an unrealistic idea.
Do you think I have too much wrong with me to get over my PD and DC? Is it possible I am as good as I am going to get? While I cannot predict your future, I think it is reasonable to expect more; time will tell. You have responded reasonably well up to this time, and you have not by any means explored all the many treatment options that are available to you. I think it would be silly to get off a horse that was recently winning after trying so few options to get him going again. Making four or five increases of your plan is not really that much to reverse a stall; you might not have done all that is needed to reverse the stall you are in. Frankly, you are nowhere near having tried all the tricks and strategies I know are available to you; you are just getting started. Because I have both DC and PD is it possible for me to get over these problems? Yes, it is possible, but I cannot say for sure how you in particular are going to eventually respond. You have not mentioned anywhere about having any other health problems, and for this reason I will assume you are in good health. If that is true, then that should work in your favor since healthy people tend to recover better and faster than those who are not in good health. Based on my experience I find that men with PD and DC can improve and get rid of both problems, but not all of them, for sure. Some do better than others; some go all the way toward either complete recovery or partial recovery that is great enough to make them happy and satisfied with what they have done. Since you have already proven you do respond to the PDI and DCI Alternative Medicine treatment strategy it is pretty obvious you are not in the last category of those who do not respond at all. Try not to let what could be only a temporary slow-down discourage you. Having both DC and PD only means that your body has more work to do than someone who only has DC or PD. Your particular problem should take more time and effort to improve simply because there is more tissue that needs to respond, but your potential reward is all the greater. Also, and I think very important, I think because you have both PD and DC going on, you could have higher nutritional needs than a person who only has one of these problems to deal with. It might be that all that excess fibrous tissue uses up or absorbs more enzymes, more vitamins and minerals than you have been taking in. It is an idea that makes sense, don’t you think? I could make a case that your intake might be too low compared to your higher requirements. For this reason I suggest that you email to me a detailed outline of your current PD/DC treatment strategy so I can look it over to see if it might be improved. I also suggest you talk to your MD about giving yourself at least another 6-8 weeks of concentrated effort in which you follow the PDI and DCI ideas that make sense to you. If that interests you, please set up some time for us to speak again on the telephone to exchange ideas. I will offer suggestions how to change your current plan that should improve your treatment plan results. I suggest a phone call because I think there are a lot of things that need to be covered and you and it will save us from having to write endless emails back and forth. Congratulations, you should be proud of your accomplishment of going from an 80 degree bend to 30 degrees, regaining some lost size, and regaining some finger movement. Don’t only dwell on the problems that remain. Remember: Glass half full / Glass half empty. TRH
Respectfully,
EBXXXXX
That for now is the conclusion of the email discussion with EBXXXX. He and I spoke a few days ago, and we discussed some different treatment strategies he had never before used. As a result he is more comfortable increasing his plan a bit higher than before, knowing that he has many more options to use to reignite his recovery. So now we will wait and see how he responds to his latest efforts.
Many people are like EBXXXXXXX who get nice results but still lack confidence their body is capable of complete recovery. My personal opinion is that someone who has made good partial recovery deserves a decent chance for a complete recovery; they need to explore and expand their treatment options for at least a few months before deciding they have gone as far as they can. Since I have yet to hear or see anyone develop any problem or side-effects from using the DCI and PDI methods, I think it is reasonable to extend a good effort to encourage recovery by fully supporting the immune response in the way that we suggest. After doing this work for a long time and dealing with many folks I find I become more optimistic with the body’s ability to heal, repair and recover. Sure, there are failures (most often brought about by not correctly using the PDI and DCI ideas), but when you consider that the MDs say none of this ever works, we are seeing some great results here. You won’t know, and you won’t benefit, until you do it RIGHT.
Let me know if you have any questions about what you are doing, please send an email at info@peyronies-disease-help.com
Stay focused to your treatment. TRH
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