December 1, 2016 PDI Newsletter
Greetings to all PDI and DCI Warriors,
Welcome to this December 2016 PD Institute newsletter. Holy Cow! This year is just flying by. Seems like we just celebrated Christmas and the calendar says it is again coming over the horizon.
This month we will once again use the familiar and popular format of reviewing a simple exchange and blending of emails between one of the many people who send emails to me asking for my assistance and my response to it. This particular email was chosen from the stack because it pertains to both DC and PD so there is something here for everyone. This particular email exchange was selected because it shows how someone with a 50 year old case of Dupuytren’s contracture is benefitting from our DCI treatment concepts, and lastly because it discusses the universal problem of discouragement and treatment burnout.
I use this approach because Peyronie’s disease and Dupuytren’s contracture cause a similar fibrous lesion in the body, and we have repeatedly seen how successful Alternative Medicine treatment is almost identical for these two problems. For this reason it is beneficial for people with PD to read about DC treatment, and for people with DC to read about PD treatment; everyone on our mailing list should benefit from learning the treatment principles and ideas found below.
As you read along with these two blended emails between JLGXXXX and me, see if any of the thoughts, circumstances and treatment approach is similar to your situation; see if anything applies to you. If so, perhaps you can make a few changes in your thought process or your self-treatment approach. I was really pleased to read in JLGXXX’s email that he said because of reading past newsletters he was comfortable in increasing his treatment plan. As such, he shows there is a real benefit to periodically read these emails that discuss a variety of treatment topics.
I think fundamentally JLGXXXXX is a very conservative person by nature and this causes his treatment approach to also be conservative. Unfortunately, conservative treatment does not always get results; aggressive treatment is often required to stimulate and support an adequate immune response against Peyronie’s disease and Dupuytren’s contracture. Most people have to work in a higher range of therapy dosages before they can see positive change like he has. Fortunately for JLGXXXXX his body is able to make nice tissue changes using the conservative plan you will see described below in his email. We all have to find what works for us, based on determining what dosages and treatment intensity is required to change the size, shape, density, surface features and degree of adhesion of the problematic fibrous tissue that is Peyronie’s disease and Dupuytren’s contracture.
For those of you who are new to our monthly newsletters, please simply apply the ideas expressed here about Alternative Medicine treatment and dosage to what you are doing for your DC or PD. Since Peyronie’s disease and Dupuytren’s contracture are similar in so many ways, treatment is also similar; what can be done for one problem can also be done for the other.
Read these bicolored and 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 JLGXXXXX and the text in red is from me.
So you think you know how I will answer you, eh? Please see below for comments…
I’m almost hesitant to send this note to you, pretty much knowing how you are going to reply. But….
I’m getting ready to place another reorder, but feel I’m at a crossroads. I’ve written to you in the past about my rather long history with DC and PD. To jog your memory, I’ve had eight surgeries to both hands staring in 1969. The last was on ’98, after which my left small finger started to bend in 2010, Sounds like you went through a real nightmare; no one has eight surgeries because the results were good. All DC surgery is only a delay tactic, since it always comes back; there is always recurrence which will be worse than the initial problem. That is just the nature of the DC animal. Direct surgical removal of tissue and Xiaflex degradation are not great solutions but they are the only approaches traditional medicine has to offer. Xiaflex recurrence is showing to be faster and more dramatic than simple surgery recurrence, with sometimes devastatingly bad side effects. But if it took 12 years for your little finger to start to flex again you went longer than most people for your recurrence. You were at least lucky in that way. I developed PD and discovered your website. Through your guidance I’ve been fairly successful managing the PD, and in 2011 DC resurfaced on my left index finger. Not only are eight surgeries a lot, but by my calculations your hand problem started with your first surgery when you were just a puppy by DC standards. If you are 72 now that means that you were born around 1944, so when you had your first surgery you were just 25 years old. Must have been tough on you. On top of that you developed PD six years ago and you are also dealing with that. The reason I point this out to you is that you must have a strong genetic predisposition to fibrous tissue hyperplasia that can be expressed in the body as in a variety of ways, such as DC, PD, Ledderhose disease of the feet or Garrod’s knuckle pads. Your history, because of such an early age of onset, suggests that you are very prone genetically to this kind of soft tissue problem, and in these early-onset cases the problems can be more severe and more tenacious than average. This, my friend, looks like the cards you were dealt. How you play them is your business. So far it sounds like you have done as well, or better, than anyone could have under the circumstances, and for that I congratulate you. You could have rolled up in a ball and put your thumb in your mouth, but you didn’t – you have been successful in doing what you can to treat a very tenacious and difficult problem. I feel compelled to remind you that when you fight with a health problem that is based on genetic predisposition you are in for a battle. That is just the way it is. With stretching and what I call “maintenance” therapy I’ve been able to keep it straight along with keeping my small finger from getting beyond about a 20% arch following your strategies. All acceptable.
However, 2015 nodules developed at based of both thumbs, (right hand more pronounced), with cords up the thumbs. Left thumb bending some.
I increased my “maintenance” plan to the following:
1/0/1 Quercetin- Bromelain
1/0/1 Unique E
1/1/1 Fundemental Sulfer (MSM +C)
0/0/1 dusaSal DMSO
Unique-E applied with DMSO
Super CP serum with DMSO
Every 3rd day – Ultasound
If the above increase is greater than your everyday maintenance plan then your maintenance plan must have been very light, indeed, by comparison to most treatment plans I review. Given your history I am not at all surprised that you developed more thumb problems while on a very light maintenance dosage. I am not complaining that you are not following my suggestion, nor am I deriding you based on you limited finances, I am just pointing out the reality of what is going on here in case it is possible for you to you put more effort into a deeper plan that could help you more. I am obliged to point this out, with the hope that it might motivate you to do more for yourself.
Things stabilized, and with stretching (primarily the left thumb) things improved some. The fact you can report that not only did your problem stabilize so late in the game, but it improved, is really remarkable. That your Alt Med plan has made a positive impact on a case of Dupuytren’s contracture that is almost 50 years old, and has been operated on eight times, is truly commendable. You should be proud of yourself, and if you think about it perhaps a bit less pessimistic about your DC. You are simply tired of the daily grind of living with and treating your DC – and you have a good right to be. Treating DC and PD this way is real work, as we full well know, but at least you are seeing benefit from your labor. Reading your newsletters however, it seemed I was being too conservative so I stepped up as follows:
1/1/1 Quercetin- Bromelain
1/1/1 Unique E
2/2/2 Fundemental Sulfer (MSM +C)
1/0/1 CoEnzyme Q10
1/0/1 DusaSal DMSO
Unique-E applied with DMSO
Super CP serum with DMSO
Every 2nd days – Ultasound
There are only a few general comments I suggest about this most recent current treatment plan you increased a few weeks ago:
1. Do not increase your vitamin E intake.
2. You are not taking any vitamin C; you might want to think about working your way eventually up to a 2/2/1, or so, dosage of vitamin C.
3. You did not list hand stretching as a formal part of your treatment plan. so I do not know how often you are doing it, but you did mention that you do stretch your hand. I hope the stretching you are doing is based on the PDI principles of gentle manual stretching; too aggressive stretching can injure the Consider getting the PDI stretching video since it is a very economical addition to your DC and PD plan, and it would greatly diversify and broaden your self-help treatment. Even though the information on the PDI gentle manual stretching is about treating PD, that same information and approach can be applied to the hand/fingers. To use the Peyronie’s stretching information effectively all that is required is a bit of imagination and experimentation to do it correctly for Dupuytren’s contracture. Folks who get that PD video and use it for their DC later report good changes because of using those same ideas and techniques.
4. The rest of your therapies can be increased slowly over time using the ideas DCI has provided on the stuffers you have received.
I have been on this now for about 20+ days, noting measurements and changes. Great. You seem to respond well to what is still a relatively light program – you are certainly doing more than you did before, but by comparison it is a much smaller dosage plan that most people must use to get positive results. Perhaps you are one of those guys who can get results on a smaller/lighter plan. If so, see what a lucky guy you are after all! The left thumb nodule has softened some and the cord relaxed a little, Nice improvement in response to just a small bump-up with your dosage, and it happened in only 20+ days. but the right thumb nodule has grown and is expanding around the base of the thumb. Bad news. The cord up the thumb is becoming more pronounced and in the morning I’m noticing stiffness and some slight pain. This is new. It is almost like the step-up has aggravated things. I think not. If the small dosage step-up were a harmful or incorrect change to your treatment plan you would not have noted the left thumb nodule become softer and less tension in that cord. I think what is going on might be as a consequence to old surgery in that right hand. Or perhaps there has been some recent hand trauma or even simple overuse (digging a few post holes or playing hours on the guitar) that could explain the unusual response. Did you have more surgeries or more extensive surgeries to the right hand than to the left? I have had people with DC that worsened in some areas while under treatment, while actually improving in other ways and other areas; both good and bad things going on at the same time during their treatment. Most of the cases I get these mixed bad/good reports indicate that the bad reactions were explained by either old trauma (surgeries, fractures, falls, etc.) making those areas weaker and more prone to a slower recovery than the other areas that were never subjected to trauma, or some new direct injury. I can only speculate since I do not have all your details, but what you report does not make me feel pessimistic about your recovery pattern since I have heard it before many times and it usually results eventually in a positive and satisfactory outcome.
As I’m getting ready to do another reorder, I can almost hear you saying I’m not doing enough. Nope, not me. That is up to you to decide if you are doing enough. All I am going to say is that “you should do as much as you can, be as aggressive and faithful as you are able to help yourself.” In short, what I want to say is just like your mother always told you, “Do your best.” What else can a person do? Your best might be different from another person’s best. We all have different stories to tell. But the thing is, this is becoming wearisome. Hell, yes. It is very wearisome if you are doing it right. What a pain in the butt it is to be watching the clock all the time and planning your next batch of pills to pop in your mouth, or your next stretching or US treatment, or “should I do the DMSO treatment now or should I do it when I have more time after I go grocery shopping?” Treating these problems is a royal pain. Sorry. That is just the way it is. I didn’t make these rules up, it is what I discovered the body requires for sufficient help to create a healing response. I am just reporting what I have figured out and what I have observed in hundreds (thousands?) of people to help them. Keep in mind we are talking about getting positive results with DC and PD using Alternative Medicine when it is not supposed to work at all. Keep in mind that the average MD would not believe the progress you have observed. It is not supposed to happen that way, What you are doing for your self is that special, so you should be happy and excited about your success. I know I am. PD and DC are supposed to require only surgical treatment, (I consider the Xiaflex procedure to be a surgical procedure) otherwise there is supposed to be nothing that helps. So if you can honestly say your nodules and cords are softer and you note more finger movement after all that you have been through, what a great thing that is. My hat is off to you. I’m 72 years old, semi-retired with limited funds. The reality of life. I do not want (will not do) surgery again, nor injections or otherwise. I know you recommend doing a lot of experimenting to get the right combination. But weighing things in balance, at this point I’m wondering if I should just go back to a maintenance mode, and ride this out and live with my condition. Your call, my friend. You know what I think. What is most important is what you think. Right now you are tired and aggravated. This might not be the best time to make any decisions. Cool off a bit and see how you feel tomorrow. You can always decide to stop treatment in a few days after you have given yourself some time to think about the next step you are thinking of making.
I know I sound frustrated, but I appreciated the progress I have made and what I’ve learned from you. But when I say I’m semi-retired, I have many commitments, and time is precious and it is difficult to maintain this regimen. Maybe it is time to just figure out how to live with this and get on to more important things. You are entitled to feel tired and fussy – you earned it. But you really cannot feel discouraged based on the positive tissue changes you see in your left hand. At the end of the day you still need both hands and all fingers to be as good as you can get them to meet those obligations you have. If you quit on yourself now you will have a lot of time in a few years to begrudge the fact that you night have avoided the problem you are in if you did just a little bit more to help yourself. Coulda, woulda, shoulda.
Well, now I’m venting, but I would like to know your thoughts. Perhaps if you want to talk you can give me a call; we can throw around a few ideas. 847-873-8888. TRH
I spoke to JLGXXXXXXX a few days after I responded to his email. As I recall that conversation he said that he did indeed have considerably more surgery and trauma to his right hand – the one that is seems to be worsening while the left hand paradoxically is showing progress. This confirms what I have observed in so many cases like his in which PD and DC progress can be slowed or stalled when surgery has been done previously.
This concludes our discussion for this issue of the newsletter. I hope everyone found this issue of the PDI Newsletter interesting and informative so you can do a better job of helping your own PD or DC condition. If you want to contact me with a question, please do so through the “Ask Dr. Herazy” Q & A section of either website at Peyronies Disease Institute or Dupuytren Contracture Institute.
Merry Christmas to all my friends and Warriors. Enjoy your holiday with those you love, and take care of yourselves. See you next year – it’s coming fast at us! TRH