March 1, 2016 PDI Newsletter
Greetings to all PDI and DCI Warriors,
Welcome to this March 2016 PD Institute newsletter.
The DCI hand stretching research study is generating surprises and good information. Hopefully we will be done in a few months and I can announce what we have determined. In the meantime this latest research project continues to keep me very busy. For this reason we again have a limited newsletter.
This month we will look at an email that was sent just a few days ago from a man with Dupuytren’s contracture. However, even though the email and ideas are specifically about DC, this information is helpful to all the readers who have Peyronie’s disease. Even my comments about Dupuytren’s surgery are also true of Peyronie’s surgery. So read on.
Read this series of combined emails 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 RMXXXXX and the text in red is from me.
See below for comments…
Sent: Wednesday, February 24, 2016 4:27 PM
To: Theodore Herazy <email@example.com>
Subject: RMXXXXX – reorder and radiation RFI
I ordered my small plan at end of Jan and followed your guidance on upping dosage
I have doubled all except vit e now and just reordered the inflammazyme. Good man. That is the way to do it at the start of care. Now you must slowly and gradually add to your plan until you see clear evidence of DC improvement: reduced size, shape, density of the hand nodules, increased “circular movement” of the nodules on your palm, and greater hand flexibility as determined by measurements with a caliper and ruler.
Nodules don’t look smaller yet Too soon for those kind of changes, my friend; you have only been on your program for a month or so. Please do not make problems for yourself by having unreasonable expectations. but my hands fell less sore, more flexible and less “tight ” I think, except for trigger finger sticking of course. Reduction of pain and rigidity of movement are common early findings with DC when people do their DCI plans correctly. You are perhaps feeling initial evidence of some nice early improvement. Congratulations, especially considering that you have been on your plan for such a short time. This is a great time for you to look for ways to measure how your hand has been distorted by your problem, as well as the DC tissue itself, so that you can be sure of improvement and rate of progress in a more definite and clear way: size, shape, density, and “circular movement” of nodules against the palmar fascia. It is wonderful that you notice your hand being less tight, but that is a actually poor way to accurately measure progress. After a few months of progress it seems everyone forgets how they felt and the details of what their problems were like, leaving you to guess about future progress compared to your past condition. You need to find as many ways as possible to objectively put some numbers on your hand problem; this means measuring and evaluating objectively different aspects of your hand. Try tracing the size and shape of each plan nodule with a pen using tiny lines all around the hand bumps (creating an outline by placing dots all around the line where the normal tissue ends and the dense tissue of the bump begins) and then use an office photocopier to make a life-size picture of your hand. Date the photocopier image of your palm, and measure the longest and narrowest part of each nodule. You then have an accurate record of what your palm for later comparison. No more, “Well, I think the lump is smaller, but I am not sure.” Do this every month to guide your decisions about increasing your dosages. I have delayed trigger surgery until working through courses of action with the DC Trigger finger also responds to this work in many cases, so you should be looking for ways to measure angles and distances when your finger locking occurs. You must be patient with your problem and your recovery, especially if you are using the small plan.
Tomorrow I will see a radiation specialist here in Mxxxxxx that has been treating early stage DC ( I am stage N) with radiation for several years for initial consult.
My hand surgeon said nothing he can do until it gets worse enough for xiaflex or surgery (not helpful as I am only 49). DCI is not against surgery for DC, but takes a strong position against jumping into it too early or when the problem is only minor. Give yourself a chance to see how your non-drug treatment will play out before thinking about surgery. Remember, there is always recurrence of DC after any kind of hand surgery (even Xiaflex injections) that will be worse than the initial condition. Surgery does not solve or eliminate the DC, it just gives from 1-10 years of partial improvement during which the recurrence appears in a form worse than the original problem. A second surgery will have a recurrence that appears even faster than the first recurrence’ it is said that the recurrences accelerate. You do not want to start on the surgical merry-go-round if you can avoid it. Once you are on it you cannot get off. At your relatively young age you do not want to get involved in a cycle of surgery-recurrence-surgery. It is always the younger people who suffer most in these cases because they have a longer time to experience surgeries that remove hand tissue until no more surgeries can be done. Then amputation is the only surgical alternative. Xiaflex injections are proving to be not the miracle procedure that everyone hoped it would be. There are far too many cases of bad reactions in which normal tissue is also destroyed by the collagenase resulting in worse nightmares; too many cases where for a brief time the DC looks better but then recurrence occurs that is worse than the original condition. I guess Xiaflex can and does help some people, but I do not hear too much about them for obvious reasons. I hear about the bad results, and there are more of them happening than expected. During the Xiaflex drug trials for Peyronie’s disease a few years ago I received emails from men who participated in those drug trials and experienced actual side-effects and bad reactions to Xiaflex that were reported during the clinical trials. They told me that their reports of these side-effects and drug reactions were not included in the official results of the drug trials, just like it never happened. So, if this is true, it can be seen that the drug trials were manipulated and controlled so Xiaflex would appear to have better outcomes and fewer bad reactions than the reality of the situation. This is how questionable drugs get on the market.
If we decide to go forward with radiation treatment – should I stop or continue my small plan? That is your call, not mine. In my opinion they are compatible, with radiation treatment and Alternative Medicine support therapy done concurrently. You should discuss this subject with your doctor, and then makeup your mind how you really want to proceed. Your decision has to make sense to you. Right now I think you need to keep in mind that the DCI treatment plan is working for you. Talk to your doctor about staying on it for a few months longer to see how far your hand can continue to improve. You might be surprised how much recovery can occur when you help your immune system this way. TRH
Thank you for providing an alternative solution for treatment for DC.
Sent from RMXXXX’s iphone 6
That for now is the conclusion of this discussion with RMXXXXX. I hope you all were able to benefit from this exchange of information. In particular I hope everyone noticed how he is trying hard to understand what he is doing and how he is trying very hard to do things correctly to get great results. I have worked with many people like RMXXXX and they usually do very well with their treatment because they are not casual about their recovery. This is serious business to him, and I appreciate that when I see it. I predict good things for him.
Let me know if you have any questions about what you are doing, please send an email at firstname.lastname@example.org
Stay focused to your treatment. TRH