January 1, 2018 PDI Newsletter
Greetings to all PDI and DCI Warriors,
Welcome to this January 2018 Peyronie’s Disease Institute newsletter. Happy New Year to all! Here is to your health, happiness and prosperity in the year to come.
This first newsletter of 2018 will be a little different. I have selected these two emails because they both discuss a similar topic and problem. It is an important and confusing topic problem related to how Peyronie’s disease progresses and improves when Alt Med treatment is successful. And, I fear, it is a topic I have failed to adequately discuss and sufficiently explain in the past.
Several weeks ago I got an email from a medical doctor who has Peyronie’s disease and has been using the PDI treatment concepts. He has written me several times in the past with many questions, as you can imagine. One of the interesting points about his treatment was that he started with a very low therapy dosage across the board and continued that way for several months. His weak treatment plan was greatly slowing his rate of improvement; and he was discouraged. He finally felt comfortable with higher dosages and things began to improve for him, as you will see. After a few months of good changes I was rather surprised when I read from him that he was going to discontinue care. In fact, in a different email I received from him before this one he said, “My girth, length, and curvature are improving nicely (60%-70%).” Yet, just a few weeks later, he was sufficiently discouraged that he wrote an email to me saying he was stopping care.
What was his reason for the change of direction? To find out, once again we are going to use the popular format of presenting a redacted email exchange I had about an issue that needs to be explained and discussed more. Every reader will benefit from these two email exchanges even those with Dupuytren’s contracture because Peyronie’s disease is so similar in many ways with similar treatment, but different rate and routes of progression once the body begins to eliminate the foreign fibrous tissue.
Keep in mind that the medical term “Rx” or “rx” means treatment.
Sent: Wednesday, December 6, 2017 5:46 PM
To: Theodore Herazy <email@example.com>
Subject: Re: Update of TGXXXXXXX’s Peyronie’s disease
I’ve stopped all peyronie’s disease rx for a while. Started in May and have progressively increased all rx to my max tolerance. U/s 10 minutes 5x/wk, enzymes 20+/day in 2 doses e.g. 8/12, plus stretching and dmso and nutritional drugs. I got about 2/3 better then past month I seemed to lose most of my gain. Did U/s re-injure shaft causing re-scarring? I’ve heard you say pd can be reversed after a decade so I should be able to re-start if I want, right? Sorry to disappoint.
From: Theodore Herazy
Sent: Thursday, December 7, 2017 8:27 AM
Subject: RE: Update of TGXXXXXXXX’s Peyronie’s disease
No, you didn’t hurt yourself with the ultrasound therapy. Something else is going on.
Don’t have a lot of time currently to explain what you are reporting, i.e. progress, followed by apparent regression. If you look at my book, “Peyronie’s Disease Handbook,” you will see that I report the very same kind of progress/regression/progress/regression pattern of scar tissue variability you noticed while I was treating my own PD. This is yet another weird thing about PD that is unlike any other disease state. Over time what happens is that the periods of regression become less significant and shorter in duration, meaning that the periods of progress become more significant and longer in duration, until eventually only the state of progress persists. In fact I think I discussed this common phenomenon in one of the recent monthly newsletters. If you look at either source you will see it discussed and explained in more detail. In fact, I would assume if you checked yourself out right now you would notice a difference (improved state with less size or density) in your PD scar. These changes are common and frequent desultory states of the fibrous material as it slowly makes progress. I would hate to see you not understand this since you have done so well, and you are not as bad off as you think you are. It would be ironic for you to stop now that recovery is within reach.
Yes, you can restart later, but the course of recovery is not always the same and nothing is guaranteed. Lastly, one other thing to consider is that because of my age I might not always be doing this work when you decide you want to take up the banner again in a few years.
Good luck to you.
Theodore R. Herazy, DC, LAc
Peyronie’s Disease Institute
Dupuytren’s Contracture Institute
This next email exchange with JSSXXXXX took place just a few days earlier than the one with TGXXXX, and it covered basically the same problem and question, “Why is my PD progress coming and going back and forth?”
Read this combined email like the back-and-forth of two people talking while 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 JSSXXXXX and the text in red is from me.
From: Theodore Herazy
Sent: Thursday, December 1, 2017 4:51 PM
Subject: RE: Can you explain
Please see below for comments…
Sent: Friday, December 1, 2017 10:04 AM
Subject: Re: Can you explain
Hi Dr. Herazy,
This is a follow-up to our phone session a couple of weeks back. I put all your suggestions and information to work right away. Thanks. After I upped my MSM and L-arginine I rebalanced the enzymes toward the end of the day, with your lighter way to stretch my hands the lumps especially the right hand now are fading faster. Two lumps on my right hand are 50% smaller and the one on the left shrunk even more than that.
The 3rd & 4th fingers move almost normal now and I can do all the things at work now without getting help.
Which brings me to my question. The progress with my DC is good but my Peyronies progress is changing back and forth lately, where some days it is pretty good and then after a few days I lose that progress, and then after losing the progress it will all come back again for a few days and everything looks much better again. What’s goin on? Don’t get me wrong, the PD is lots better but it just does not stay that way from one time to the next when I check it. Even on a bad day when the PD has come back and is not as good as it was the time before, it is still better than when I started. It is discouraging that just when the scar looks like it is just about gone the next time I check on it it will be bigger and harder again for a few days. Then when I check it again in a few days it will be softer and smaller again. It is driving me crazy. I have never heard of anything like this before. Shouldn’t be one way or the other? What you are describing is a fairly common response of Peyronie’s disease scar tissue in the early stages of recovery when it vacillates back and forth between progress and reverse of progress. It doesn’t always happen. This variable back and forth of recovery is just another one of those strange things about Peyronie’s disease. When it happens it is usually during the first 1-2 months of recovery until it finally calms down and just continues to show progress with fewer and fewer bouts of temporary regression, until the regressions stop I can tell you that it happens, I can describe what happens when it happens, I can share your frustration and disappointment with you when it happens, but I cannot tell you why it happens. I really wish I knew because it would help a lot of men feel better about it when it happens to them. As far as I know I was, in my book “Peyronie’s Disease Handbook” written in 2002, the first person to describe this oscillating or vacillating reaction of PD scar tissue as it is improving. You can read a more detailed description of it there. You can also take small comfort to know that many men have gone through the same fascinating and frustrating reaction as what you are experiencing. All I can tell you is to hang in there and wait it out. Soon the amount and duration of regression will decrease and the length of time between the improvements and regressions will improve in your favor; the improvement will last much longer and the regression will last much shorter. Eventually the regressions will stop, and only the improvements will continue and you will only have to deal with the progress. When you get your DC treatment dosages and other therapies up to where they need to be, the tissue will often change (about 8-10 reports of moderate to marked success for every one report of failure) – just like in Peyronie’s disease. But Dupuytren’s contracture improvement behaves differently. The difference is that I have never heard of regression of the soft tissue changes in DC as occurs in PD. In Dupuytren’s contracture the soft tissue softening and elimination proceeds forward without temporary reversal or regression, although the rate of improvement appears to be slower than in Peyronie’s disease. If you continue using your plan as you are, you can look forward to this progress that has already started with you. You are on track with your treatment because you are reporting earlier and faster improvement with your Dupuytren’s contracture compared to your Peyronie’s disease.
After using the US unit for about 6 weeks in a 7mo plan that was getting just OK results I think the US helped my progress to increase greatly more then anything else. It may be the best thing I’m doing. Even though you might feel that way, you are wrong. I agree that US therapy is helpful for DC and PD, there is no way you or I can prove how much any one particular therapy of all that you are using is contributing to your current hand improvement. I think a lot of people have a favorite therapy they use; they might enjoy using it more or they have read some good things about it, and for whatever reason they believe it is doing more for them than the others they use. I know you have a more difficult battle with your Dupuytren’s contracture than most because of your family history with PD and DC, difficult digestion that limits your therapies and your botched Xiaflex procedure. You are lucky you are such a tenacious (stubborn?) person that you have stuck with it through the slow early stages of treatment. Is there anything I can add to my treatment plan to keep this progress going even better? No. Stay with what is working. Considering your history of gut sensitivity and the limited number of therapy items available to you, I do not have confidence in anything else that might help Dupuytren’s contracture. You have tried a lot of different things in a short time, and what you are taking is good to your gut and is helping you. I suggest adding nothing new but perhaps trying different dosages and combinations of those therapies that are working for you. Sure, there are always some new discoveries that people promote, but I think what we have listed on the DCI site represents the best and most reasonable list of scientifically approved therapies.
My stomach forces me to emphasize on the topical treatments and only some on the vitamin and enzyme approach. This is why I was happy to try the US unit 2 mos ago to my plan that was going slow. Most of my plan is limited by what my stomach tolerates, so I have been careful about the enzymes and other things. Here is what I am doing now that is working, but I want to do more so what can I do?
Vitamin E 1/1/0
Natto 1500 2/2/4
PMD DMSO 2/day sometimes 3/day
Vitamin E oil 2/day
Super CP 2/day
Hot packs 10 mins before DMSO
US 3/wk 10 mins each time each area
Stretch hand and shaft daily 20 mins each
Nei Gung 5/wk
All this looks good to me. Since you are making progress with this recent plan I suggest to continue doing what you are doing. Make changes to it only if your progress stalls for any length of time. Short periods of time when no changes are being made are not uncommon; only be concerned if no progress or changes occur for a few weeks at a time.
Hope you can explain why the good changes from one problem are stable and the other one changes so much. I have already told you I do not have an explanation, so this is only an educated guess: Dupuytren’s contracture is a kind of superficial fibromatosis of common connective tissue involving common connective tissue that is found everywhere in the body, and in DC just happens to be in the hand. Peyronie’s disease is also a superficial fibromatosis but it occurs in the tunica albuginea which is a unique kind of tissue that starts out in the abdomen of the developing fetus. This abdominal embryotic tissue moves around and eventually winds up in just two small areas of the body (covering the testicles and internal chambers of the penis [boy] or the ovaries [girl]). Perhaps this irregular and vacillating route to recovery of the scarred tunica albuginea in Peyronie’s disease has something to do with the fact that very unique tissue is involved, making it behave unlike common soft tissue as it heals. Hope this helps. TRH
Well there you have it. Both TGXXXXX and JSSXXXX were both making progress, everything is proceeding nicely and according to a common and strange way that Peyronie’s disease behaves in the early phases of recovery. But, neither of them knew this was a common and somewhat “normal” way for Peyronie’s disease to improve when using natural Alt Med. They were unaware because they did not read, did not remember, or were not told, about this quirky way that Peyronie’s disease can often vacillate or fluctuate between improvement-regression-improvement-regression in the early stages of recovery.
When a person recovers from a health problem the rate and direction of recovery is generally constant and continuous, unless something happens to reverse or set back improvement. Not so with Peyronie’s disease. But then again, a lot of things about Peyronie’s disease are weird – great variability of symptoms, defiant to standard kinds of drug therapy, slow rate of progression and recovery, tendency to recur after surgical intervention. Why not more weirdness with a variable and fluctuating recovery as it is healing?
Hopefully, you now know about it and you will not get spooked if it happens to you.
I will try to do a better job in the future about reminding my readers more often about it so that no one will stop care because they do not understand what is going on.
Again, Happy New Year.
See you next month. Stay in touch and send your treatment questions to me so I can give you some ideas to work with. Contact me at firstname.lastname@example.org TRH