July 1, 2015 PDI Newsletter
Greetings to all PDI and DCI Warriors,
Welcome to this July 2015 PD Institute newsletter. I trust all my friends are well. A belated Happy 4th of July to you. Our early summer has been untypically mild and pleasant here in the Midwest; hope nothing changes that. We had a summer here a few years back where it got into the 90s only once or twice – it would be nice to repeat that.
This month we have a short email conversation to review that took place between a DC warrior and myself. Since treatment for Peyronie’s disease and Dupuytren’s contract is so similar, except for the obvious anatomy, men with PD can certainly learn and benefit by reading these email exchanges about Dupuytren’s treatment. There are a lot of dosage ideas and treatment strategies below, so everyone should be taking notes.
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In the following email exchange with THXXXXX you will see two things: Even though this conscientious lady with Dupuytren’s contracture is making progress with the fibrosis in her hands (Dupuytren’s contracture) and feet (Ledderhose disease), she still vigilant and dedicated to staying on track and making progress. She is taking nothing for granted.
The second thing you will notice in this email exchange is that THXXXXX is not a bystander. She is not expecting me to take over her treatment plan and tell her what to do; she is in charge. As the boss of her plan she is taking the time to ask me a few questions to see if she can be doing better. This is exactly how it should be and it is the way I see so many of the truly great DCI and PDI success stories take place. You can read between the lines of these few emails from THXXXXX and sense that she is not messing around, hoping for the Fairy Godmother of Miracles to tap her on the head. She is working her DC treatment plan like someone who is all business, who knows that getting back the full use of her hands (and feet) is totally up to her. I am delighted to assist her with the ideas and observations I have developed over the last 13 years.
Take a moment to look inside where you keep your motivation and personal energy. If you see that you are not approaching your treatment plan in the same way – change, and get with it. Hoping, wishing, and timidly “trying” a little of this and a little of that simply will not be effective against the evil trio of Peyronie’s disease, Dupuytren’s contracture and Ledderhose disease. These are complex and tenacious problems to deal with, that typically earn very poor results with the traditional medicine approach to treatment – this is why your MD gave you such a warm and positive welcome in his/her office.
In the email below you will see reference to Ledderhose disease (LD). For those in the readership who are not familiar with Ledderhose disease, it is a fibrous tissue disease that affects the soles of the feet. Under the microscope and in life LD affects the involved tissue very much like PD and DC. Painful nodules and lumps of variable size develop on the bottom of one or both feet, but only rarely is there ever contracture or cord development of the involved toes. Usually there is a lot more pain associated with LD than in PD or DC because of the extreme and constant pressure that is applied to the bottom of the feet.
Also, in the emails below when you see a notation like 2/1/2, it is a dosage reference that describes exactly how often and how much during the day a particular supplement is being taken. “2/1/2” means that whatever therapy product is being discussed is being taken on this schedule: 2 in the AM, 1 in the mid-afternoon, and 2 in the evening or before bed. Along a similar line, a 3/4/5 dosage schedule for any of these products would be taken 3 in the AM, 4 in the mid-afternoon, and 5 in the evening or before bed. OK? This system is a great way to make dosage notes for yourself and when sending me emails about your own treatment plan. It is a fast, simple and easy way to convey treatment details. Please do not write to me and say, “I am taking 4 Neprinol a day.” This information does not tell me what I need to know. In this case you should tell me, “I am taking Neprinol 1/1/2” or however you are taking your Neprinol.
For those who are new to the PD Institute readership, read the following 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. What you will see below are two different emails that you might say are overlapping each other, switching from one writer to the other. To understand the flow of this email conversation, keep in mind that the text in black is from THXXXXXX and the text in red is from me. Here we go:
On Fri, Jun 5, 2015 at 5:08 PM, Theodore Herazy <herazy@comcast.net> wrote:
Greetings THXXXXXXXX,
See below for comments…
Regards,
Theodore R. Herazy, DC, LAc
Peyronie’s Disease Institute
Dupuytren’s Contracture Institute
From: THXXXXXXXXXX
Sent: Friday, June 5, 2015 2:56 PM
To: Theodore Herazy
Subject: Switching from Inflamazyme to Neprinol
Hi Dr. Herazy-
I hope you are doing well. I could use your guidance in how I make the transition from Inflamazyme to Neprinol. As we discussed at my phone consultation I have been slowing increasing my Inflamazyme (alternating with increasing PABA, Acetyl-L-Carn and Fund Sulf) Good. This way you are increasing your enzymes faster than you are increasing your other support therapies. This is good strategy. so that I am now at the following schedule:
Acetyl-L-Carn 0/3/0 Possible 6-8/day. Consider spreading this dosage out during the day to something like 1/1/1, then 1/1/2 or 1/2/1/, then up to 1/2/2 or 2/2/1 when you are ready for 5/day, etc. ***See below for comments
Fund Sulf 1/1/2 Possible 6-8/day.
PABA 4/0/0 Possible 6-8/day. Consider spreading this dosage out during the day so you are not just taking four PABAs at the same time in the AM. If possible go to something like a 2/1/1 or even a 2/2/0 pattern if the last part of your day is not easy for you to take your therapy supplement. As you increase your dosage from the 4/day up to the next level then you could try a pattern like 2/2/1 or 2/1/2, then at the next level up a pattern like 2/2/2 or 3/2/1 etc.
Quer Br 2/0/0 Possible 3-4/day. Consider spreading this dosage out during the day so you are not just taking two at the same time in the AM.
Scar Free 1/1/1 Good
Inflam 1/3/5 Good.
Vit E 2/0/0 Good. Consider spreading this dosage out during the day so you are not just taking two at the same time in the AM.
Don’t make these changes all at once. Consider these increases as possible GOALS for your dosage; to eventually work up to these numbers.
Once you have topped out at these dosage suggestions I want you to call me for another 15-30 minute discussion. We might want to discuss broadening your plan to include CoEnzyme Q 10 or others. Keep me posted about what is going on with you maybe in a month or so, OK? There are several more strategy changes and alternate plans to throw at your double-whammy DD+LD. I feel optimistic for your situation because you have already shown progress, but yours in not the usual situation so there might be some bumps and detours in the road.
I have in my notes that when I was taking approximately 8-9 Inflamazyme you recommended that I switch to Neprinol. As the two supplements have different makeups, I’m not sure if I should just replace Inflamazyme capsule for capsule with Neprinol or if you’d recommend something else. You could start Neprinol at 6/day, with slow gradual increase up to 10-12/day. Continue with more of this enzyme in the PM than the AM, as you are doing now. So if you are taking 6/day, you are doing it on a 1/2/3 schedule that would later become 1/2/4, and then 1/3/5 as you gain dosage strength. As an example a 12/day schedule often looks something like 3/4/5, or 2/4/6 or 2/3/7. For some reason I have not determined, there are some people who do better on one pattern than the other. This is exactly why I stress that every 7-10 days you change your plan in some way to see how your tissue responds to these tweaks. You do not know until you try.
***You will note that I am stressing to you that only enzyme products (Neprinol, Inflamazyme, Bromelain, Nattokinase, Fibrozym) are best taken with this increased dosage at the end of the day (as in a 1/2/3, or 2/2/4, 2/3/6 etc. pattern). Other non-enzyme therapy products (MSM, acetyl-L-carnitine, vitamin E, Ubiquinol/coenzyme Q10, PABA, etc.) are not subject to this suggestion, and can be either spread out evenly throughout the day (1/1/1, 2/2/2, 3/3/3, etc.) or taken in other patterns that might be more conducive to your work schedule or other factors that affect how many pills you can carry around with you during the day. For example, a school teacher just might find it impossible to take any therapy products in the early afternoon or middle of the day, so only a 2/0/2 pattern might work for her. Or a police officer might not be able to take supplements in the PM so in this case only a schedule of 3/3/0 might be practical.
Keeping exact track of dosages and frequent changes in your patterns is exactly why I have started to include those little “Current Strategy” pads of paper when you get your order from DCI and PDI. These note pad pages will help you keep track of all the little strategies you try from week to week. Once you hit on the strategy and dosage that your body needs, the amount of tissue change and the speed at which it happens can be amazing and rapid. You do not know until you try. But I guarantee that after a few weeks of making dosage changes you will not be able to remember your previous dosage experiments. You must keep these pages for reference. I see the directions on the Nepronil bottle say that 9 capsules is the therapeutic dose so that seems logical but I thought I would double check with you. Any direction you can provide is appreciated.
I am continuing to do hot water soaks 1-2 times per day and using Copper, Vit E and DMSO twice a day and doing daily treatments with the ultrasound. As I have both hands and feet to treat no area is being treated more than once every other day.
My current results are that I had gained 29 mm in the spread on my left hand since Jan, 2015, but recently lost some of that spread in the past month and now have a 19 mm gain. My right hand had gained 9 mm but I have also regressed over the past month and am now at 4 mm gain. I’m not overly surprised by this because I have new nodes that have developed and some of my cords have thickened as well. Any idea why you regressed this way? A pause in your therapy plan? Stress in your life? Trauma to your body in the form of sickness? Trauma to your hand in the form of yard work or falling on it? The circulation in my hands and feet has dramatically improved and remains that way. Many people report this kind of circulation change during therapy; a nice benefit. No more cold hands and feet and they were freezer cold when I started. I literally had to sit with a heating pad on my hands and feet to be comfortable. I am so grateful that those days are gone.
Just as a refresher I have a pretty aggressive case of DD and LD with all 5 fingers on the left hand affected and 3 fingers on my right hand Unusual to have so many digits involved. and am a 50 year old female. If there are any other changes you’d recommend that I make to my treatment plan I would certainly appreciate your input. Keep on checking for positive changes in tissue and range of motion every 7-10 days. If no positive response then increase dosage. Once good things start to happen then just keep therapy plan the same as the changes should continue to accrue. I am very happy that I have made gains, but would like to get to a point that I can stop the disease from progressing.
Make sure you are spending time during the day frequently applying MILD GENTLE stretch to the hands, not the feet. The feet get enough stretching while you walk. If not sure how to do this please call for appointment.
Would you object if I used this email exchange in an upcoming monthly newsletter? TRH
Warm Regards,
THXXXXXXX
Regards,
Theodore R. Herazy, DC, LAc
Peyronie’s Disease Institute
Dupuytren’s Contracture Institute
On Fri, Jun 5, 2015 at 6:16 PM, THXXXXXXX wrote:
Thanks for the quick and detailed response Dr. Herazy. Of course you can use this in an upcoming newsletter. I hope it helps someone else.
By the way, I appreciate your last newsletter that concerned the rude guy who argued with all your ideas, but didn’t know what to do to help himself. Because of what you wrote I went back and revisited my plan to make sure I wasn’t misinterpreting anything. Even though I had read the information through several times, I did find one area that I needed to tweak. Just want you to know that what you do is appreciated. Have a wonderful weekend.
Warm Regards,
THXXXXXXXXX
Greetings THXXXXXXXXX,
Please see below…
From: THXXXX
Sent: Monday, June 22, 2015 2:58 PM
To: Theodore Herazy
Subject: Re: Switching from Inflamazyme to Neprinol
Hi Dr. Herazy-
Although it has only been a little over two weeks since I sent you that last email about the progress with my hands I wanted to provide you with a brief update of how I”m now doing. First the great news, I have regained ALL of the millimeters I had previously lost last month. Last month I lost 10 millimeters in the spread of my left hand when measured from the outside corner of my pinkie to the center tip of my thumb. I since have gained those 10 millimeters back. That is great news. Thanks for sharing. That is a sure sign that your tissue is responding to your therapy plan. If your observations and notes are detailed and accurate I suspect you should soon see reduction of the size, shape, density, surface features of your hand nodules and cords, or increase of the degree of movement.
I thought about the question you asked regarding what had changed in my life or my treatment program, which might explain why I had lost some of the increased movement I have in my fingers. At first nothing really jumped out at me as I’d been continuing with both my internal and external therapies and had not been sick or under any additional stress. But the more I thought about it I realized that my hot water soaks had become luke warm water soaks and there were days I was skipping soaking altogether. Well, there you go! I knew there had to be a reason you lost a little bit of ground. You apparently cut back on how you were doing your hot water soaks without being aware of it, and that made a big difference in your results. Glad you gave some time to review what you are doing. The important thing is that you did not panic and you did not quit; you dug in and calmly took stock of what you are doing. Moist heat is an important therapy that is often overlooked because it seems so old fashioned and low tech. Please keep up with it. I think I wrote you in the last email that you need to not get overconfident now that you are making some decent progress. I see many people making the mistake of slacking off a bit when they start to see progress happening. I think I know why this happens to some folks: Good DC treatment is very intense and takes a lot of time to get results against this fibrous tissue disease. When improvement occurs, even though we are not consciously aware of it, we take it as a sign we can slack off a bit. I know it can be tiring to keep up such an intense schedule of treatment for months at a time, but that is what is required. Do not get off a winning horse. Don’t let up care until your nodules are gone and your fingers have full movement. I was also rarely doing the stretching exercises you’d recommended so putting them in would be an addition of sorts because I had been doing them so infrequently. Also a highly under-rated therapy. Even though the hot water soaks are a bit uncomfortable as it tends to really heat up the abnormal tissue in my hands, I knew they needed to come back. I can definitely feel the tissue stretching when I soak and spread out my fingers in the hot water.
I’ve also made a much more focused effort to get my gentle stretching in multiple times a day. We all have dozens and dozens of pockets of time scattered throughout the day that you can use to stretch for 30-60-90 seconds that could be put to productive use if you just develop the habit to start stretching. So, get in the habit of stretching those hands. The key is to go about it very gently – so light that you think you could not be helping yourself – but to do it often. I set 4 phone alarms to remind me to do my hand stretches. I’m actually doing my stretches more frequently than 4 times a day, but having those alarms go off or even thinking about the fact that the alarm is going to go off reminds me to stretch my fingers. Good for you. Allow yourself to become obsessed with these little strategies and things that will help you. That way no day escapes me without stretches having been done. Of course this has been combined with my switch over to Nepronil so I am thrilled with recapturing all of the flexibility and span I had lost.
For the first time, I’m also experiencing noticeable tissue changes upon palpitation. I feel a softening of the cord tissue in my hands. Two cords in particular have gone from being hard like an eraser to soft like a gummy bear. Based on what we’ve discussed previously, I believe that means I should stay at my current dosages and see if I continue to make gains. Yes, if your current plan is working do not change anything. Try not to get over-confident. Just keep your head down and keep at working your plan. If I don’t continue with these tissue changes or gains, I will go back to implementing the increased dosages that you recommended. Yes, that is exactly how it is done. If I have misinterpreted your directions please let me know. Nope, you are the expert.
Thanks Dr. Herazy for your encouragement and guidance when I got a bit lost on my path. Trying to improve my DD and LD Of course you know it is possible to apply all these same therapy ideas I suggested for your Dupuytren’s contracture and apply them to your Ledderhose disease. Might be a little awkward to get to all parts of the foot that are need to be treated, but so long as you can reach your foot you can do whatever you do to your hand to the hardened tissue of your Ledderhose problem. You probably do not need to stretch the sole of your foot since you are frequently walking all day long. However, if you do not walk very much during the day (lots of sitting) consider working something out at home where you can passively stretch your foot (toes up toward the head) while you relax during the evening. Keep in touch. Stay focused. TRH has been a real practice in patience but it has been made so much easier by having you and all of the information you share to direct me along the way.
Warm Regards,
THXXXXXXXX
Regards,
Theodore R. Herazy, DC, LAc
Peyronie’s Disease Institute
Dupuytren’s Contracture Institute
So there you have it. This is the conclusion of the very instructive email exchange between THXXXXX and me. I really hope the message gets across that you simply have to keep on top your plan and note how your tissue is responding to your current strategy. Be on the lookout for small changes as you tweak and experiment with your plan every 7-10 days. If you are approaching your treatment plan in any other way, you are playing the foolish game of hoping and guessing that something good will eventually happen to you. With this DCI and PDI treatment concept you will not have to hope; you will know and you will be in control of your treatment. You will feel confident and less stressed about your Peyronie’s disease – or Dupuytren contracture – for the first time in a long time. Wouldn’t that be nice for a change, eh?
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 info@peyronies-disease-help.com
TRH
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