April 1, 2017 PDI Newsletter
Greetings to all PDI and DCI Warriors,
Welcome to this April 2017 Peyronie’s Disease Institute newsletter. Strange winter, eh? But then again, most seasons take some quirky turns.
Once again we are going to use the popular format of presenting a recent email exchange I have had with someone in which I have blended my email response directly into their original email − like two emails in one. This is how I often reply to people’s questions since it is a faster and more accurate way to communicate. This email was selected because it discusses the topic of changing dosages as a person improves, something that applies to both Dupuytren’s contracture and Peyronie’s disease treatment.
There are two important themes in this email exchange. First, it shows the value of an aggressive treatment start. So many people wait a month or more before making any increase of their dosages. Yet they wonder why they have not made any progress after 2-3 months of low dose care. These folks conduct such a slow and hesitant plan that they get tired of treatment before they reach a good therapeutic dosage level. Second, this exchange discusses Xiaflex in some detail. This particular subject seems to be very popular lately so it is important to highlight it here. I am not fundamentally against the use of Xiaflex injections. However, I am against the use of it as a first-line effort if a more conservative approach has not been used first. The Xiaflex injection procedure is not like getting a simple shot at the dentist. What one shot of Xiaflex does to the body changes a person forever, sometimes for the better (at least until the next go-round of Dupuytren’s contracture or Peyronie’s disease recurrence), or for the worse when side effects and accidental tissue destruction occurs (which is more common than patients are being warned about).
Most of you with Peyronie’s disease and/or Dupuytren’s contracture have considered Xiaflex injections at one time or another. It sounds like an easy way out of a bad situation: Get a little “shot,” no cutting involved, fibrous tissue dissolves, and presto you are back to normal. Right? Isn’t that pretty much the way it is presented? There is actually a lot more to it, and then some. There is a dark side to Xiaflex injections that is not being told to the people I communicate with before they receive it. On a doctor’s recommendation a person will receive a series of Xiaflex injections without knowing much more than what their doctor tells them – which is often times as little as possible. Doctors have found that if they give too much information about the risks and negative side of some procedures the patient might not cooperate with how the doctor wants to treat the patient’s problem. This is not something the doctor wants. To keep the patient more cooperative doctors sometimes do not present all details, risks and extent of the negative outcomes involved with Xiaflex injections. It is informative to read some of the comments about Xiaflex on the forums and various Peyronie’s disease and Dupuytren’s contracture websites.
For better Xiaflex treatment results there is probably nothing more important than the skill and experience of the doctor giving it. To become authorized to inject Xiaflex the only additional training and education required for a doctor is to watch a 15-20 minute online video – that’s it. No special competency testing is required. And there is no easy way to know how many Xiaflex injections any doctor has done, or how well they have turned out. Considering some of the horror stories you can read on the PDI and DCI website, and forums throughout the internet, there can be huge problems when things go wrong.
Side effects and mistakes with Xiaflex can be minimized to some degree by doing everything possible to use an excellent doctor. This is why you really want someone who gifted with the hands of an angel performing this procedure. Use a doctor who is highly skilled and experienced treating Peyronie’s disease and Dupuytren’s contracture with Xiaflex injections. You must appreciate the difficulty of doing a Xiaflex injection correctly, and how easy it is to make a mistake: the doctor is working blind and cannot see what structures (nerves, blood vessels, tendons and ligaments) are below the skin as he/she advances the needle that is filled with the collagen-digestive enzyme (Xiaflex). These collagen-dissolving enzymes will destroy any tissue that contains collagen they come in contact with; this includes skin, muscles, tendons, ligaments, nerve sheaths, blood vessel walls. Xiaflex should only come in contact with the fibrous Peyronie’s disease scar or the Dupuytren’s contracture cord. If it leaks out of the fibrous tissue or is deposited by mistake near or onto normal structures they will be partially or completely dissolved. For these reasons anyone thinking about getting a Xiaflex injection would be well-served to spend a lot of time finding the very best doctor they can afford to administer it.
As you will learn from this email exchange, LCXXXXXXX had a bad reaction from his Dupuytren’s contracture Xiaflex injections. However, his large plan is making positive changes in the hand, as well as his Peyronie’s disease. As his problems improve he asks for ideas about applying more treatment. However, he hesitates because he is concerned about intestinal reaction to the heavy enzyme intake he is using. I offer him advice about managing his current plan, as well as ways to avoid diarrhea, gas and bad breath that occasionally occurs in the early use of higher enzyme doses. Since Dupuytren’s contracture and Peyronie’s disease are so similar in many ways, treatment is also similar; what can be done for one problem can also be done for the other. So read on.
Read these two 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 LCXXXXX and the text in red is from me.
On Mar 11, 2017, 9:51 AM -0400, Theodore Herazy <firstname.lastname@example.org>, wrote:
Please see below for comment inserted into your recent email…
Sent: Thursday, March 9, 2017 9:22 PM
To: ‘email@example.com’ <firstname.lastname@example.org>
Subject: Dupuytren’s treatment question
I got a DC large plan almost 4 months ago and I need to ask a question after some background. I am trying to help my Dupuytren’s contracture but also the bad reaction from Xiaflex injections 2 years back. Lately it seems I am receiving more reports of bad reactions to Xiaflex for Dupuytren’s contracture and Peyronie’s disease. I suppose there are people who have good results from Xiaflex − there must be − I just do not hear from them; I hear from those whose hands and shafts have been ruined by the collagenase enzyme of Xiaflex. All drug and surgery use has to be evaluated in terms of risk and reward, For any possible reward what is the risk involved? But, Xiaflex is different from most drugs because even if you get a great result from a Xiaflex injection, the reward is rather short-lived. Meaning, if the Xiaflex dissolves your foreign fibrous tissue only, and does not destroy normal hand and shaft tissue, the Peyronie’s disease and Dupuytren’s contracture will still come back in a few years – sometimes even in less than a year. That is a lot of risk for fleeting reward. Dupuytren’s contracture recurs because the tissue destruction caused by the Xiaflex will start another cycle of inflammation that again results in more fibrous tissue in the hand than the first time; each recurrence is worse than what came before it. To minimize risk it is always best to seek out and use the most highly skilled doctor you can find. It seems that most stories of poor Xiaflex outcomes I encounter occur when a person has the injection done by their family doctor or one with limited experience and a poor skill level. Getting a Xiaflex injection is not like getting a flu shot; there is a real art to delivering the Xiaflex exactly where it belongs and nowhere else. I started your treatment because I had nothing to lose because my right hand was so bad after the Xiaflex so I really went heavy gung-ho into it and not looked back. My hand was driving me crazy and I wanted to get results fast. That is the way to do it. People who get the best results with the DCI or PDI treatment protocol hit it hard and really push themselves for at least 3-4 months. If our natural Alt Med approach is going to work it will happen because of aggressive intake of these vitamins, minerals and enzymes. Those who are more aggressive take a shorter time to reach the higher dosage range. There is nothing like seeing your fibrous tissue start to fade away to motivate treatment and stimulate confidence. I am definitely having less pain and more finger movement for the first time since after the Xiaflex messed me up. I had to take early retirement because my hand was pure misery and I could not do my job. I pray that in time I can have a more normal hand.
I took the Xiaflex shots because they can be used for Peyronie’s disease and Dupuytren’s contracture. I have both problems so my idea was to I start with the hand because it seemed safer to test it out that way and maybe get the shots for the PD later. My doc gave me a choice between surgery and Xiaflex but he made it sound like this would take care of my hand better than surgery. He never said things could go wrong like they happened to me, so I thought this new procedure was going to be easy but I had major problems right away after the Xiaflex. Before surgery (I consider Xiaflex injections a form of surgery for obvious reasons) doctors tend to tell their patients all the good points and normal outcomes, and not much about bad results. Lots of people go into Xiaflex injections and hand surgery thinking they are going to solve their problem once and for all. Later, when things don’t go so well they are surprised because the surgeon never explained how problems can happen. When the cord was injected the first time I saw stars but I managed to not pass out but two days he did another Xiaflex shot and I passed out this time. It was like my hand was dipped in hot acid. I wasn’t there, of course, so I am only guessing, but what you are describing is when the needle hit a major nerve and then the injected Xiaflex went into normal tissue that was destroyed by it. A few days later I had bruises up and down the arm into my armpit. My hand swelled up and a week later 3 large blisters started near the injection sites that got deeper and I could see the flesh. I had to have surgery to clean up what the doctor called reaction sites and 4 months of PT on my hand but I still can’t make a fist or wash my face, shave or open a door with that hand. Before the shots I had no hand pain just a small bump and cord that kept my ring finger flexed down a little but now the pain goes from slight to extreme with my whole hand stiff, its worse when I use it, with my right finger still bent like before. The hand Dr. told me most of my problem now is from carpal tunnel or arthritis. What a bunch of crap he throws around to protect himself!!! On top of all that my low back pain of many years got worse for no reason like somehow the Xiaflex got into my system and is causing me problems in other parts like I read about on the web. I wish I had a good way to explain this, but I do not. I hear people reporting this same kind of distant pain and even bruising that shows up on the upper arm, back, abdomen or neck after having Xiaflex in the hand. When this kind of reaction is figured out I fear it will not be a good thing: Strong collagen-digesting enzymes flowing around the body into other tissue where they do not belong sounds like trouble in the future.
2 years after my Xiaflex shots I am worse in several ways than before it but the good news is that after just a few weeks on my vitamin plan the hand does not hurt nearly as much or often and even when it acts up after doing to much the hand pain is not bad like before. I can make a fist 50% better than before. I do not think I will ever have a totally normal hand again because a lady PT told me I have nerve and tendon damage in the palm. Your observation is important. Even though you probably have nerve and tendon damage in your hand like your PT told you, your Dupuytren’s contracture treatment plan is doing something good for those damaged tissues. That is not to say your hand is going to be normal again. But, the improved hand pain and better range of motion could not suddenly appear after two years of post-surgical misery if some degree of tissue healing and scar elimination was not happening – you are feeling better because something good is happening to the areas damaged by the Xiaflex. I speculate that your large plan is helping your body to support and encourage a process called “scar remodeling” in which the scar tissue is reduced. This is making your hand feel and function better. This is why these Alt Med treatment plans help Dupuytren’s contracture and why it could help a hand scarred by a Xiaflex mishap. There is no way for anyone to predict how much more pain and stiffness reduction you can expect in the future. All I can say is that I think so long as you can document improvement it is reasonable to continue to do what you are doing. Who knows how much you can help yourself? Don’t make the mistake to underestimate the ability of the body to heal itself. Also my erections are stronger now that each PD scar went from feeling hard like a pebble to feeling like the rubber bulb in a eye dropper bottle, and I think they are smaller but I don’t know how to measure them. I might be straighter but I can’t be sure I never measured myself because I put all my attention into the hand situation. It always leads to problems when you do not properly determine size, shape, density and surface features of the PD scars. Do your best to draw them to scale and make careful notes about tiny details you notice about how smooth or slippery each one feels. All of this important because this information is used to determine when progress is being made, so you know when to stop increasing your plan. Please send me a note the next time you place an order and I will send you information how to do this for Peyronie’s disease.
When my dosages got up to what I see in the newsletters that is when things started to happen to the hand and PD. Any way to make this plan better? I am taking Neprinol 2/5//7, Brom 5000 1/2/3, Inflamazyme 2/2/3, Natto 1/2/3, Vit E, 1/1/0, PABA 3/3/1, A-L-carn 3/3/3, MSM 2/3/2, L-arg 2/3/2, Quer/Bro 1/1/1, CoQ10 0/1/0, Scar Free 2/day, DMSO trio 2/day, US 3-4/wk with hot packs after. I do light hand stretching like we talked about maybe 12/day at least 10 mins each. This is a lot of work but I know nothing was helping until I started doing all this. You are getting results, so my opinion is there is no strong or compelling reason to change anything in your current plan. However, I know that we all have that urge to want to do more and to do better. If this describes how you feel, then make any changes you decide upon gradually and keep excellent records of what you are doing at each step. This way you will know for a fact what is in your plan today before you change it tomorrow. It gets extremely confusing later on if you do not do this. You want to be able to go back to the exact plan you were using when your plan was working well, in case the changes you make are not good and cause your plan to stop working – it happens. If you really want to increase what you are doing, my suggestion is for you to leave your Vitamin E and Quercetin/Bromelain dosages alone, at least for now. The other therapies can be increased, especially the enzyme group. You might also want to consider including Serretia into your mix; even though it is another serrapeptase supplement it can sometimes be the addition that makes all the difference.
My question is when I bumped up the enzymes I noticed the most improvement so I want keep pushing them more but how can I avoid having a lot of gas if I take more enzymes? Yes, most people find better results if they emphasize enzyme dosage more than when they bring up everything equally across the board. If there is a problem with gut irritation from a plan it is usually found within the enzyme group, not the others. If you have a history of gut sensitivity it sometimes happens you can be sensitive to a higher dosages of enzymes; most people have no problem handling very high enzyme dosages. Here is my theory why this happens: These systemic enzymes in our DCI plans do not do anything to your normal healthy gut lining, they only affect inert foreign fibrous tissue like in a scar. But when they are working well these enzymes can overload the intestine with the breakdown products of the foreign fibrous tissue they encounter. This overload of collagen breakdown products can cause foul smelling diarrhea, gas and bad breath. There are two ways to manage this problem: 1. When you were starting out you increased your dosages every 7-10 days. Now that you are getting results at this higher dosage level it might be necessary to for you to slow down how often you change your enzyme dosages to every 14-21 days, maybe more. You have to experiment with yourself to see what works best for you. Chances are you are currently increasing your enzyme intake faster than your body can adapt and accommodate to the release of fibrous tissue toxins released by the enzymes. Everyone has a different tolerance level for these enzymes; you must listen to and respect what your body is telling you. Now that your plan is working, you are at a stage where you can do things a little differently. This is not a race to see how fast you can get to a number. You want results with your Dupuytren’s contracture and Peyronie’s disease. Go slower now that you are working at the higher dosage range. 2. On days when you are busy and cannot tolerate having diarrhea, gas and bad breath, drop down each of your enzyme dosages (usually just one fewer pill for each of the enzymes you take at a time) so that your gut can manage a smaller release of breakdown products it receives. Notice I did not suggest you stop your Dupuytren’s contracture treatment plan or drastically reduce your enzyme intake because this would reduce the effectiveness of your plan and prolong your eventual recovery. You want to reduce the enzymes only as much as they are not making your life complicated. On days when you are at home and can otherwise manage your diarrhea, gas and bad breath, I suggest continuing your enzyme dosages as they are. Over time you should notice the diarrhea, gas and bad breath eventually stops as your gut accommodates and finally does a better job of handling the tissue breakdown toxins coming in. Any ideas would be appreciated. How much more improvement do you think I can expect from the hand? I think that is unknowable. Be grateful you are improving, think happy thoughts, and keep doing exactly what you are doing so your tissue has as much help as possible to clean up the problem that started with the Xiaflex. Please be sure to check with your doctor so he/she approves of any of my suggestions you decide to use. Good luck with your Peyronie’s disease. TRH Thank you for all your help.
I hope everyone found this issue of the PDI Newsletter interesting and informative so you can do a better job of helping your own Peyronie’s disease or Dupuytren’s contracture condition.
If you want to contact me about your problem, or questions about treatment, please send an email at email@example.com
Stay focused to your plan and be successful.