Aprl 1, 2015 PDI Newsletter
Greetings to all PDI and DCI Warriors,
Welcome to this April 2015 PD Institute newsletter. I trust all my friends are doing well with their self-treatment. It will be great to have this winter weather behind us; let’s hope we are able to finally enjoy the pleasant climes of April.
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I believe the most important lesson of this email discussion you are about to read is this: It is necessary to increase treatment dosages until the correct level is found that assures tissue changes continue to improve. Treatment dosages are usually not static; they have to be increased in the initial period of care when the body is beginning to respond to the improved nutrition you are supplying. Even though a person notices that small progress has occurred in the early stages of a standard DCI or PDI Alternative Medicine plan, it is often necessary to change or modify that first few dosages every 7-10 days in order to continue stimulating those positive and desirable tissue changes that spell treatment success. Since everyone is different, with different nutritional needs and different metabolisms, there is no way to know exactly how far it is necessary to increase a plan to keep those good changes happening. Everyone has to study their unique situation, monitor their dense and contracted tissues for any small signs of tissue change in order to find a way to make their body respond in the best way possible. It takes focus, persistence and determination to find the correct dosages that causes the PD and DC tissue to change for the better.
We have not reviewed an email correspondence in the last few newsletters. So, this month we will again feature the popular and instructive format in which I present a series of emails from someone who has Peyronie’s disease or Dupuytren’s contracture that offers the opportunity to review important treatment information that will benefit the entire reading audience regardless of which problem they have. Since PD, DC and LD (Ledderhose disease of the foot) are so similar in many ways, treatment is also similar; what can be done for one problem can also be done for the other.
As you are about to learn, THXXXX has a very severe and rapidly developing case of Dupuytren’s contracture. My reason for presenting a few recent emails from her this month is to show everyone – those who have Peyronie’s disease as well as Dupuytren’s contracture – four extremely important characteristics displayed by the people who do well in their self-treatment programs:
- People who successfully treat their DC or PD tend to get involved in their care; they are not passive; they think and take action like they are the captain of their one-person team, not a bystander waiting to for something to happen.
- People who successfully treat their DC or PD tend to take action; they expect results and they do not wait endlessly for good treatment results; when the results they want do not appear they get busy and do something to help themselves. The don’t just wish for improvement, they work.
- People who successfully treat their DC or PD tend to follow the suggestions for treatment that are displayed on the DCI and PDI website.
- People who successfully treat their DC or PD tend to ask questions, and heed the answers they are given.
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 THXXXXX and the text in red is from me.
Thank you for your kind letter. See below for my comments within your email…
Sent: Thursday, March 5, 2015 9:43 PM
Subject: Thank You and Request for Guidance
My name is THXXXXXXXX and I’d like to thank you for all of the assistance and resources you provide to those dealing with Dupuytrens and in my case Ledderhose disease. I ordered your large program and added the Super CP Serum as well as hot water soaks twice a day to this protocol. I experienced positive results after 2 weeks (more details shortly). Pretty incredible! That is a very fast tissue change in your DC that you mention, although I have had other people report the same kind of progress in a short time. However, it seems the majority of people begin to see some small tissue changes in the first 6-12 weeks or so, some longer. Onset and speed of recovery varies widely for reasons I have not yet determined. For that I’m very grateful and I’d like to continue to make progress but I’m confused by my current state, thus why I’m writing for assistance.
A bit of background about me. I’m a 49 year old female. I developed Dupuytren’s contracture in both hands 4 years ago and Ledderhose disease in both feet 2 years ago. As these things go, you developed your problem at a slightly younger age than average. This poses a long-term treatment strategy problem for you, in that you have a long life ahead of you during which your Dupuytren and Ledderhose conditions can potentially worsen. Because you are so young to have this fibrous tissue to develop so severely in all four extremities, I want to mention a thing or two about surgery. You need to keep in mind that these hand and foot problems typically only worsen over time if left untreated, and that they also recur or return if they are disturbed surgically. That is the dilemma of DC: it worsens if you leave it alone and it worsens if you surgically stimulate it. The longer the time available for worsening, the greater the potential problem. For those people who resort to surgery thinking it is a quick fix to their problem, they ALWAYS learn eventually that their problems recur even after surgery. Many people enter into DC or LD surgery because they have the false assumption that it will solve their problems, only to learn that Dupuytren and Ledderhose surgery merely gives a brief reprieve followed by a downward spiral as the problem soon recurs. Sometimes the recurrence takes many years, but most usually the recurrence happens in just 2-4 years, and sometimes in a year or less. The terrible thing about this recurrence is that it will ALWAYS recur into a Dupuytren or Ledderhose condition that is worse than the original status (before surgery); not only that, but it triggers the progression of the next recurrence at a rate faster than the first recurrence. This means that if the first recurrence took place in two years, the second recurrence will likely happen sooner than two years. The result is that each surgery for Dupuytren and Ledderhose precipitates a worse case of Dupuytren and Ledderhose that will recur faster than the one before. It is like stepping onto an accelerating merry-go-round – you quickly return back to where you were and continue on the ride. Someone who is in their 70s or 80s and develops Dupuytren’s contracture can think about surgery more realistically, because they unfortunately do not have as many years ahead of them to develop any recurrence. But someone in their 40s who has a Dupuytren’s surgery has a long time ahead of them to develop a worse case of Dupuytren’s or Ledderhose disease, again and again. Each time a Dupuytren or Ledderhose surgery is done a small or large amount of tissue is removed by the surgeon, depending on the unique condition of each individual. If a person has 2-3 such surgeries over the years they eventually run out of tissue for the surgeon to work with. In these cases the surgeon will finally not be able to do any more surgeries – no matter how bad the contractures and cords, or how bad the pain and distortions – because there is no more viable tissue remaining in the hand or foot to work with. It is like the person who has a dress or a suit altered by a tailor too many times; eventually no more alterations can be done because there is not enough cloth left to work with. In cases where a few DC surgeries are done the surgeon is finally left with no good option but to tell the patient to simply endure the problem as it gradually worsens, or consider amputation. I wanted to bring this out to you because at your age, in my opinion, I think your best option is to get ahead and stay ahead of your problem with non-surgical Alternative Medicine methods. You need to speak to your doctor about these treatment issues. I received radiation therapy that ended in July, 2014 which was unsuccessful in stopping the progression of the disease. My left hand has nodes and pits and cords in all 5 fingers (confirmed by two hand surgeons). Unusual for all fingers to be involved. My left pinkie has a 47 degree contracture, 4th finger 20 degrees, and 3rd finger 5 degrees. My right hand is less impacted and I have multiple pea-sized nodes in my palm and cords in my 2nd, 3rd and 4th fingers. As my left hand has cords in all 5 fingers, I’ve experienced contracting across my entire palm which decreased my ability to spread out my fingers. I added measuring the spread of my fingers from the outside nail bed corner of my pinkie to the center of the tip of my thumb as a baseline. I experienced a stunning 9 mm improvement in my left hand spread after the first 2 weeks. My right hand, which is much less impacted, experienced a 3 mm improvement. The pathway to recovery is not always a straight line, THXXXX, and the recovery does not always continue as it starts out. There are sometimes inexplicable detours and even regressions that occur. And like a lot of travels, delays can happen. I do not want you to think that just because so much progress has been given to you at the beginning, that this is how your recovery will continue. For many reasons the degree and rate of recovery can change when we are dealing with any of the fibromatoses like Dupuytren’s contracture, Peyronie’s disease or Ledderhose disease. I do not want to see you discouraged in the least if your recovery takes a turn, as it sometimes does. If you stay in communication with me I will be able to offer ideas and suggestions to consider that might be of some help to your eventual recovery. (Please let me know if you’d like to see the images which show the caliper measurements as well.) Yes, I would like to have those images for my records. In addition to sending those images I would appreciate any kind of detailed background information about the condition of your hand before and after treatment, as well as detailed information about the dosages of the various therapy products you are using.
Thank you Dr. Herazy! You were able to help me accomplish what radiation therapy had not. I’m grateful for my improvement and it was such a blessing to experience this early on as it gave me an immediate boost to continue.
I’m taking the minimum dose recommended for each oral supplement, utilizing hot water soaks, the topical Vitamin E, Super CP and DMSO twice a day. I utilize the ultra sound 3 days a week for 10 minutes per hand. I apply the ultra sound after the hot water soaks, Super CP, Vitamin E and DMSO have been applied. I use the continuous signal mode and make the small circular pattern you recommend. That all sounds good, so far.
Here is where it gets a bit confusing and I’d appreciate your assistance on what to do next. Over the past 6 week, I’ve diligently continued with the program and seen no further improvement. What is a bit more concerning is that I’ve noticed the cords in my 4th finger have thickened slightly as I can no longer remove my wedding ring. Have you actually measured your cords, or are you only making that assessment on the basis of your recollection? The cords in my right hand have thickened slightly as well. Again, have you measured these cords, or are you relying on your visual memory? I suggest you stop right now and use the special caliper you got from DCI to measure all of the hand cords – and write down your findings for later comparison. You are right now entering into an important phase of your self-treatment and you want to collect facts to guide you ahead. If you do not have facts, but only recollections, your decisions will suffer. However, I haven’t lost the improvement in hand spread that I gained in the first two weeks. In the early stages of treatment it is not unusual for one aspect of DC to improve (as in your case, gaining range of motion) while another aspect of the problem gets worse (as in your case, tissue thickening). Not all aspects of the problem respond at the same rate or in the same way, unfortunately. I think the next month or two will tell you much more about the degree and rate of recovery your tissue is able to respond to this kind of conservative non-drug non-surgical care. No one can anticipate how much and how rapidly anyone will respond, or even if someone will respond. There are no guarantees in this kind of work. You do your best and you see how (or if) you are able to influence your own recovery. So far, so good. I don’t know if that means I should make changes in my program or if I should just continue ‘as is’ for the next couple of months to see what happens. First, get a set of accurate and objective measurements of all aspects of the size, shape, density, surface features and degree of adhesion of your palm nodules and pits. If you do not know how to do this, please arrange for some time to speak with me and I can instruct you how to go about do these things. I had been approved for Xiaflex but decided to hold off and try your program. I am not a big fan of Xiaflex, or injectable collagenase, because even from the beginning I had my concerns about it. The entire PD/DC/LD-community would like to think that Xiaflex is the answer to everyone’s problems. But, alas, in the real world the reality of Xiaflex is proving that it is not the easy path to a cure that everyone hoped it would be. There are unfortunate drawbacks and limitations of Xiaflex that did not show up in the clinical trials that are becoming more apparent as time goes on. Do not let anyone tell you a Xiaflex procedure is not surgery. Like all Dupuytren surgeries a Xiaflex procedure will result sooner than later in a recurrence of the original Dupuytren’s problem – and the recurrence is always worse than the original problem, but in the case of Xiaflex use it has been found that the recurrence rate is usually faster than outright surgery with a scalpel. Perhaps the faster recurrence with Xiaflex is due to the larger area of tissue destruction that occurs when the collagenase is injected into the hand, as opposed to surgery with a scalpel. Anyway, more and more doctors are turning their backs on Xiaflex. Over the last few years I have heard of some Xiaflex horror stories; not all have immediately terrible outcomes, but it does happen. For someone like you who has gotten prompt improvement without drugs or surgery, I suggest that you work in this direction long and hard before considering any kind of surgical intervention. I’m happy to pay for a consultation with you, but thought this would provide some background.
A couple of other points. Overall, I eat a whole foods, predominately plant based, minimally processed diet and have for the past 3 years. I’m virtually sugar and alcohol free (1-2 glasses of wine in a month). My mother, developed DC in her late 60s but only has nodes (thank goodness). Mom is now 73. I’m also treating my feet but can’t effectively measure the nodes as they can only be palpated. There are other ways to evaluate and monitor progress of the Ledderhose nodules on your feet. More about that if you decide to set up a phone discussion with me sometime in the near future.
Any assistance you can provide would be much appreciated. Probably the best way to provide this kind of assistance would be to set up a phone consultation. When we discuss more details of your problem I can give you many ideas that should get you pointed in the right direction. TRH Again, a big THANK YOU for helping me make progress at all. It’s particularly amazing that even when the radiation failed, your approach has pushed back on my DD.
I appreciate your response to my email. Please see below for more comments…
Sent: Friday, March 6, 2015 2:56 PM
Subject: Thank You and Request for Guidance
Thank you for your quick and detailed response. You shared many insights that have been both reinforcing with new information that I will use. Knowing there will be peaks, valleys and potentially even some regression reassures me and helps me dig in for the long haul. As you said, I plan on being around for many more years so I am more than willing to put the time and effort needed to get the best results.
I too have read many horror stories regarding surgery but I’ve seen much less information regarding Xiaflex so I found your comments particularly enlightening. Both surgeons I spoke with about my hands presented Xiaflex to me as ‘no big deal’. Doctors in general can afford to be very brave and philosophical when it comes to the dangers and risks of taking drugs and using surgery for other people. But I can assure you that when it is their own hides (or hands) they are considering they, as a group, tend to be far more conservative and cautious about using those same drugs and surgery they prescribe for others. I get to work with many MDs when they contact me about avoiding surgery for their own Dupuytren’s contracture (or Peyronie’s disease, a problem of the male reproductive system that affects the tissue similar to Dupuytren’s contracture). TRH I’ve learned over the years to take the least invasive approach possible. I have very long, fine bone hands and fingers with very little tissue so your comments regarding tissue loss carry a particular importance for me.
I have purchased a 30 minute consultation so we can discuss further. I will organize my photos and dosage notes for you this weekend so I can send them to you in an organized fashion. I thought I had done a thorough job of measuring, but I have not measured the thickness of my cords so I will do that as well.
Thank you again Dr. Herazy. I look forward to speaking with you in the future. Have a great weekend.
On Fri, Mar 6, 2015 at 12:26 PM, Theodore Herazy <firstname.lastname@example.org> wrote:
Sent: Tuesday, March 10, 2015 11:18 PM
Subject: Thank You and Request for Guidance
I just wanted to send a short note of thanks for our conversation yesterday. Sometimes just having a bit more of a plan, some words of encouragement and speaking with someone who has lived through it can help lift your spirits. That is exactly what you did for me yesterday. I’m fortunate in that my family is very supportive and I have the time to dedicate to getting better which I know is a huge blessing.
Although I have been dedicated to my treatment program, I was feeling a bit sad about the fact that I had to have my wedding ring cut off on Sunday. The good news, as I tell my husband, is I’m keeping the man! We’ve been married for 25 years and he is definitely a keeper.
Our conversation gave me a much appreciated boost. Thank you for taking the time and the extra time you spent with me. Hope you have a great week.
There you have it. That is how this lady’s Dupuytren’s contracture self-treatment is going thus far in the early stages of her self-care. She is obviously working hard to correct her problem and I will offer her what help I can that might be necessary in her pursuit for relief from Dupuytren’s contracture. Because THXXXXXX is taking responsibility for her self-treatment and seems to be demanding a reasonable amount of progress for her efforts, I expect her to continue to make favorable progress based on her initial response, although anything is possible.
If things are going slowly for you, and you feel discouraged or you are not sure if what you are doing is correct, put that energy into something productive. Contact me and I will do the best I can to help you so that you get the kind of results you want. If you need feel you help with your problem or you have questions about treatment, please click on Peyronie’s phone discussion or Dupuytren’s phone discussion. People are always pleased with the amount of helpful information they can receive during one of these phone calls.
Look again for another PD Institute Newsletter next month.
Stay focused to your plan and be successful. TRH