Tuesday, November 26, 2013

Moisturizer Withdrawal - ITSAN - And Other Ramblings Rant

All information posted on this web site is the opinion of the author and is provided for educational purposes only. It is not to be construed as medical advice. Only a licensed medical doctor can legally offer medical advice in the United States. Consult the healer of your choice for medical care and advice.

I recently received an invitation from the office of my last dermatologist to be a part of a study on a new drug. My Derm is going to do another research on the efficacy of a new drug on steroid induced eczema, which by the way, he thinks is atopic dermatitis, or eczema. I guess technically he's correct, but he is overlooking what's causing the majority of the symptoms of the atopic dermatitis in the first place. This is the same guy who happens to be a very respected professor (amongst his peers) at an extremely well known hospital, and is considered to be "the" top dermatologist on the west coast of the United States. The same guy that screamed the words, "eczema is a chronic disease!" at me near the top of his voice at my first, last, and final visit with him. His voice still echoes in my head along with my response of "I will never take steroids again!" This is the same guy that told me I would have to be on steroids for the rest of my life. The same "expert" that would not accept my conclusions that topical steroids had caused my current rash, and what he was really looking at on my body was STEROID INDUCED! Not regular eczema! Topical steroid induced eczema you moron!

This man is at the top in his field, at the pinnacle of his career. He spends a lot of his time researching and setting up studies, writing papers, etc., on the efficacy of new steroid drugs that the pharmaceutical companies make, in an effort to try and cure the rash caused by the other steroids the pharmaceutical companies have already made. Pure madness! He must be working for them, not his patients who pay him for medical care. So why do I call him "my" doctor? Shouldn't I refer to him as "the big pharmaceuticals company's doctor?" Or, for short, "Big Pharma's" doctor. He certainly isn't working in my best interest. The ironic thing is, I'm the one that pays for his service, for the drugs, and for the added pain and suffering as a result of "my doctor" really being "Big Pharma's" doctor.

What a nice little biz the medical industry has going. Design drugs to treat symptoms of drugs that mess you up. Then design new drugs to treat the symptoms of the ones that messed you up in the fist place. It's an endless merry go round designed to make more and more money. But at whose expense? They do it with every disease known to man. When was the last time you have heard of an actual cure for a disease. There is no money in cures. However, there are trillions of dollars involved in treating disease symptoms!

Why was he so resistant to what I told him about my body being addicted to topical steroids? Surely, he has seen thousands of cases nearly identical to mine. So, the question remains why. I think most of us can figure out the reasons if we think about it long enough.

Prevention is the key to avoiding most disease, and most disease can be prevented but not cured. Does one cure cancer? Of course not. One can only prevent it, and if one gets it they can treat it's symptoms and try and bring the body back into balance. But you don't actually cure it. You bring the body back to the healthy state it was in before the cancer took hold, so that it can no longer take hold. Yet, there are claims everywhere that cancer can be cured. So many non profit organizations have racked in so much money in the name of "finding a cure" over the decades, it makes my head spin just thinking about it.

We can break a leg by accident. Can we cure broken legs? No, not really.  We can mend or fix them but not really "cure" them. Can one speed up the healing of a broken leg? Probably. I imagine one can slow healing as well. Can one speed healing of withdrawal from drugs?  Or, does it takes an exact set amount of time?

I've been seeing several people have decided to try moisturizer withdrawal and are discovering good results. I am so happy to see this. Elated actually :). I don't know of anyone who has done it and found it to be the wrong way to go. Just a few old vets who tried it for a couple days and never really gave it a chance to work. They still cling to their false beliefs about moisturizing.

See Tracy's recent attack on my character in a different blog. Another obvious attempt to discredit me. The fact that he can't control me and others must be driving him nuts. Maybe he has serious control issues, who knows. For those of you who aren't aware of who Tracy is, he is one of Itsan's biggest cheerleaders on their forum. He is always there to tell all the people new to tsw to not waste their time and money on diet, and just do what makes yourself comfortable. And, to moisturize to your heart's content. Oh, and last but not least, "the only known cure is time". That is his and Itsan's mantra. They all seem to overlook a commonly known phenomenon called "the placebo effect" when it comes to that last erroneous statement.

Yes Tracy, attack all you want. It only makes your true colors show. You have a real talent for insulting and  ridiculing people, and making them appear to be wrong even when they are right. You should work for the Government. Perhaps be a politician.

Here's my "conspiracy theory" for you Itsan cheerleaders! Moisturizing during topical steroid withdrawal makes the symptoms any where from 2-10 times more difficult and uncomfortable to deal with than does not moisturizing. Moisturizing during topical steroid withdrawal prolongs healing of the skin. Put that in your pipe and smoke it you Itsan cheerleaders.

How much freakin evidence do you need!!!

And yes Tracy, Itsan does owe me a public apology. They allowed people like yourself (readers, do not confuse this guy with the very sweet female also named Tracy) to publicly insult and ridicule me and others, and then deleted my posts when I tried to defend myself against the attacks. While you're at it, tell Itsan to feel free to return the $150.00 I donated to their organization. I didn't realize at the time what kind of organization I was supporting, and wholeheartedly regret making that donation. I despise the idea of my money supporting a small group of people who have so much influence over so many ill and distressed people seeking answers, being used in a way that leads people down a path of unnecessary pain and prolonged suffering. Especially when you have been shown over and over again your beliefs on methods of healing from tsw are dead wrong. yes, I'll say it again. Dead wrong! Does that hurt your egos or something? It must be something because I have never seen anyone so resistant to new (and valuable) information like I have seen with you people!

Yes, my dear readers, I know I sound bitter. Who wouldn't? Most people who have been banned from Itsan have had lots of valuable information to contribute. It's people such as these that helped make Itsan the most prominent voice out there on tsa/tsw, so why does Itsan ignore these people? Why is Itsan is so cold and heartless in the way they treat their own supporters who try to express alternative ways of healing, which are all better than what Itsan promoted in the past? Things change. New things are learned. Itsan isn't changing with the times like they should be. Lots of questions here but no answers. Maybe Tracy will come along and throw out some more insults. I somehow doubt it though as he doesn't have the balls to debate an issue on facts. Or, even debate an issue for that matter. He prefers to throw insults and run and hide. Itsan, your mealy minded minions aren't helping, and only making you look worse than you already are. End of rant.

Thursday, November 21, 2013

Is "A One Size Fits All" Approach Appropiate For Topical Steroid Withdrawal?

 Please bear in mind, I'm not a doctor and the following are only my opinions. Do not take anything you read on my blog as medical advice, because it is not intended to be. I can be dead wrong in why opinions and conclusions. The following is for informational purposes only.

Is there a "one size fits all approach" for topical steroid withdrawal? Let's examine the question. Joey had an extreme case of tsw due to 40 years of ts use. From pictures I've seen, she had really major edema, red skin syndrome, and nearly full body symptoms. See Joey's Pictures. She had a very bad case. Kristina Ventura is a board member who eventually connected with Joey via Facebook after a long desperate search in finding a cure for her daughter. I think Kelly had a pretty bad case of tsw but not quite clear on that.

Since some on the the board, Joey, and many of the few vets on the forum seem to have all experienced extreme tsw cases, this might be why they hold so strong to their beliefs about moisturizing. Their approach is based on their own experiences, along with experiences in helping other people with extreme cases of tsw.

However, I'm not sure if a "one size fits all" approach is appropriate in tsw when it comes to moisturizing. Not all who do tsw have extreme symptoms such as these people had. I personally have suggested all people to not moisturize, but I have to wonder if that should apply to the most extreme cases or not, as it might not be possible for them to not moisturize early on in tsw due to their extreme condition. I would consider my own tsw as "middle of the road". Not extreme but not mild since I lost 90% of the use of both hands for 2-3 months. MW enabled me to regain the use of my hands sooner than if I had continued to moisturize, but still, my case wasn't as bad as these "vets" had in their experiences.

From all of the blogs I have read so far, it appears the severity of various peoples tsw symptoms varies widely due to many factors such as length of time they used ts, ts strength, how much applied, and how addicted they are to it. It is clear to me that moisturizing prolongs skin irritation and healing. But, if one has full body symptoms they might need to moisturize initially, and then after a period of time, say within a few weeks, do moisturizer withdrawal at that point.

In conclusion, I have to assume most tsw cases fall somewhere in the middle as far as severity goes. Therefore I believe most people doing tsw should not moisture at all during MW. But people who have used a lot of topical steroids for decades may consider very light moisturizing in the beginning of tsw. I would strongly urge anyone who does moisturize to only use natural moisturizers like white palm oil for a short period. Avoid all products with man made ingredients derived from petroleum. And to keep in mind that companies often advertise moisturizers as "natural" when they are not. Read the ingredients. If there is more than one ingredient don't use it.

Also, bear in mind, even using the most natural of moisturizers, such as white palm shortening, irritates the skin due to the skin's super hypersensitivity in the early stages of tsw. So, if one begins tsw by moisturizing, one should consider moisturizer withdrawal within a reasonable amount of time before the moisturizing causes more problems.

Monday, November 18, 2013

Discover My Secret To Speeding Up Topical Steroid Withdrawal

My disclaimer: All content provided on this blog is for informational purposes only. The owner of this blog makes no representations as to the accuracy or completeness of any information on this site or found by following any link on this site. The owner of this site/blog will not be liable for any errors or omissions in this information nor, for the availability of this information. The owner will not be liable for any losses, injuries, or damages from the display or use of this information. Everything I publish on this blog are  my opinions only, and should not be taken as medical advice in any way, shape, or form.

When deciding to do topical steroid withdrawal, most people will do just about anything to ease the pain and itching they experience. The symptoms are often so severe that we can't help but try and find ways to make ourselves as comfortable as possible while we wait for the body to begin producing it's own cortisol once again. This takes time and we all want to speed this process up in any way possible. We research diets, which moisturizers are best to use....wait, did I just say which moisturizers are best to to use? Let's find out.

After we stop using topical steroids, the skin becomes extremely sensitive to any and all stimulus for a quite a while. The skin can’t even tolerate the most natural of moisturizers, much less tolerate moisturizers that have skin irritants in their ingredients. The skin reacts to various stimuli and the eruption is similar to original eczema. However, it is merely steroid induced eczema and is usually misdiagnosed by physicians as atopic dermatitis. It is the eruption of atopic dermatitis, but it is caused mainly by long term topical steroid use, not by things that typically might cause atopic dermatitis. Remember that original atopic dermatitis itself has a tendency to be healed naturally, as does childhood eczema. Steroid induced eczema is only healed by cessation of topical steroids.

Quitting topical steroids puts our bodies in turmoil because we are no longer producing cortisol on our own due to using synthetic cortisol (topical steroids) for too long of a period of time. Without the cortisol, the blood vessels in the skin stay open, creating inflammation, nerve pain, and intense itching. At the beginning of withdrawal, the steroid induced eczema initially becomes much worse. Steroid induced eczema will also often erupt on areas of the body where we never used topical steroids. Even these areas are often hypersensitive.

Gradually our bodies re-learn how to produce the cortisol on their own and the symptoms lessen as time goes by. The skin slowly heals and the steroid induced eczema slowly disappears. The skin's hypersensitivity will vary in degree and length of time, depending on many factors, with the biggest factor being whether one uses moisturizers or not during the withdrawal process.

Since the skin is extremely hypersensitive in the beginning stages of topical steroid withdrawal, one should avoid using moisturizers of any kind. Using moisturizers during this period only irritates the skin, prolongs healing, intensifies itching. People are lead to believe that they need to moisturize during this time which is very unfortunate. Using moisturizers during the early stages of withdrawal is likely why so many people have such a difficult and long recovery period, and why so many have such horrible flares or rebounds.

Hypersensitivity after withdrawal decreases as time passes. For me, it took nearly 5 months. I'm currently at month 5 and my skin's hypersensitivity has decreased by about 90% now. I used various moisturizers in the first two months with very poor results. So I quit moisturizing, and after the initial moisturizer withdrawal, I started healing much more quickly. Actually, that is when I started healing in a significant way.

Most people who begin their withdrawal process use moisturizers with the idea they are helping relieve their symptoms when they are actually doing just the opposite. As a result, these people often have extremely difficult recoveries. Ask yourself, if my skin is super hypersensitive, should I be putting things on it that irritate it? Clearly the answer is no. Think about it. Common sense and logic suggests the very worst time a person can apply moisturizers to their skin is during the withdrawal process due to the skin's hypersensitivity. 

Hypersensitive skin does not react well at all to any stimuli, so slathering Vaseline, or any other product on your skin does not do you any favors, despite conventional wisdom. If you are already using moisturizers you should stop and allow your skin to heal naturally. Otherwise, you will likely experience a much longer withdrawal period, and much more pain. 

The skin barrier is severely damaged in the areas where we used the topical steroids the most, and as a result, this is the areas that have the thinnest skin and are the most hypersensitive. This is the last place you want to put anything on your skin. 

The skin will heal in time but you can support your body and skin in healing by doing the right things. And, by avoiding the wrong things. Moisturizer withdrawal during tsw is "a hard landing" as Dr. Fukaya puts it. However, you need to ask yourself, do you want to experience even more pain than what you're experiencing now just for one week in order to be able to recover in a faster and more pain free way for the rest of the duration? Or, do you want to have a long drawn out recovery with skin splits and wounds that never seem to heal, along with all the other problems that continuous moisturizing causes. 

Moisturizing with many common over the counter products can actually contribute to further damage of your skin barrier. Even moisturizing with natural moisturizers for extended periods of time have negative effects on the skin.

I haven't heard from many whom did tsw without moisturizing in the beginning, but would like to hear from those people who have. Many people in Japan do it this way. I imagine it is an easier way to go than to have to withdraw from it after initially using it. But, it's well worth the effort anyway. I have posted my own experience with withdrawing from moisturizers two months into tsw, and how I did it, in other posts on this blog for those who want to know what to expect and how to deal with that first difficult week. I'm always available for you if you have any questions. Others that have posted their MW experiences here are available as well. 

So, which moisturizer is the best one to use during topical steroid withdrawal? Based on all available information that I have learned from my many months of intensive research, and personal experience, I would have to say your own body is your best moisturizer. Let your body heal naturally. You will be glad you did. 

Support your body's natural ability to heal itself through good diet habits, positive thinking (believing), and don't smother your skin with anything. That folks, are the basics of speeding up topical steroid withdrawal! Be sure to watch for my future posts on this and related subjects to topical steroid addiction and withdrawal. And, be sure to view comments on my blog from others who have had a much easier time of tsw than most do. Our combined experiences reveal what you want to know about tsw but rarely hear anywhere else :). 


Monday, November 11, 2013

Quote Of The Year!

"It's a completely well known phenomena where the body simply stops producing oil in response to external moisture. It's so basic my hairdresser knows it."  

The quote above is by a poster on my blog named jsan. See the thread titled "Itsan - A Hand Holding Forum" if you would like to see what else jsan had to say. jsan is one of a just handful of us who have done tsw without the use of moisturizers.

Friday, November 8, 2013

5 Months Off Topical Steroids - Can Topical Steroids Cause Eczema?

Today marks my 5th month since stopping my topical steroid use and I want to give an update. First, a brief history. I used betamethasone dipropionate ointment USP, 0.05% very sparingly on a spot about 1/4" in size on my lower extremities about once every other day for 18 years. This spot was biopsied at the time as Psoriasis. It didn't really bother me much and I only used the ts on advice from my doctor. After using it for about a month, I complained that the red spot kept coming back and was told to apply it daily even when the spot was clear, as that would keep it away.

Fast forward about 18 years and what appeared be be eczema showed up in a small spot on the palm of my right hand. So, I started applying the ts on that spot too. Over the course of about a year that spot grew and spread over the entire palm and fingers. Then it spread to my left hand and by a year later I was covering both hands with this powerful drug like it was a moisturizer 2-3 times per day. I didn't know the drug was as dangerous to use as I later found out. Various doctors over the years would always renew my script without ever once talking to me about the effects of using ts long term. My last doctor had called in my script for 5 tubes of the ts ointment when I had asked to renew just the one. I assumed the drug must be half way safe if he is prescribing 5 tubes for me and hasn't warned me about any bad effects from using it. Wrong assumption!

About 6 months ago I tried doing prednisone for a week in a desperate attempt to rid myself of this rash unsuccessfully. I had reached the point where the ts were no longer effective, and my hands were a bloody mess with multiple skin splits, deep fissures, swollen, and raw as hamburger. The ts had completely destroyed the skin barrier in my hands. My hands looked as bad as the worse case I have ever seen in any picture so far. I jumped on the internet searching for answers because after seeing my doc and two derms, I was in such bad condition from further treatment with even stronger steroids that I wanted to die. I knew they were killing me but wasn't sure how or why. After spending countless hours over several days of researching I finally found my answer. We all know what that is. I was addicted to topical steroids. Well, not I, rather my body was addicted to the drug. Thanks to Dr. Rapaport, Dr. Fukaya, the Itsan website, and the many blogs that tsa/tsw people have made I was able to figure out what was wrong with me. Actually, I already knew, but confirming what I thought I knew made it all fall into place for me. I truly appreciate all of you and your efforts to expose the truth. This is why I started my own blog, to help others who go through what I had gone through. Doing my own blog will help someone else in the future so it feels good to pay it forward. That's the least I can do.
OK, at 5 months I am doing very well. I have suffered immensely but in spite of it all I feel pretty good. I truly believe that is due to not moisturizing. I still have the sleepless nights, the zingers, the intense itching etc., but all these symptoms were greatly lessened by moisturizer withdrawal 3 months ago, and both my skin and symptoms are slowly improving week by week. After initially stopping the steroids I had what appeared to be eczema pop up on both my arms and legs in large patches, where I had never used ts. These areas are now 99.9% healed and the skin appears normal. My hands are the last to heal since that is where I applied most of the ts, especially the area on my right hand where I first started applying it. That spot has been the most difficult to heal, has the thinnest skin from the ts, breaks open the easiest, and will obviously be the last place to heal. Oddly enough, the original spot on my lower extremity didn't react much to tsw and is just slowly disappearing.

The eczema that popped up on my arms and legs is what's called "steroid induced eczema". So, is the eczema that is on my hands. Real eczema in adults is fairly rare. As Dr. Rapaport noted, childhood eczema burns itself out in adulthood. That is how it worked with me and everyone in my family. Like Dr. Rapaport says, doctors today are confusing steroid induced eczema with real eczema. They haven't ever seen real eczema so they confuse it with the rash that topical steroids cause. It looks like eczema but doesn't "act" like eczema. It is steroid induced eczema, a side effect of prolonged ts use.

I want to say one thing here I feel is important. Many people fear clearing their tsw and then rebounding. Many people have had horrible rebounds after many months of improvement. I have feared rebounding as well due to reading about it. However, I no longer fear it because I no longer believe it will happen to me. Why do I believe it won't happen to me? Because I have come to the conclusion that the majority of people who have experienced rebounds have rebounds due to moisturizing during their recovery. I could be very wrong on this so we will have to wait and see. Something must be causing these rebounds as it doesn't make sense for them to happen without some kind of external cause. I know tsw "doesn't make sense". I have heard that too many times now but need to make sense even if it's not probable. When any healing is set back it is usually due to an external source and not from the actual disease. It can be due to stress, changes in diet, attitude, and many other things. I just don't believe tsw is that different from any other healing crisis.

I have had a couple "mini flares" but that's about it. I continue to slowly improve and it is very noticeable when measured by comparing this week to last week and so forth. My hands haven't improved in a discernible way to the naked eye by looking at a picture since posting my last pics so will post new pics later this month. All I want to know at this point is when can I call myself a vet? Just kidding!!

Tuesday, November 5, 2013

Itsan - A Hand Holding Forum?

My disclaimer: All content provided on this blog is for informational purposes only. The owner of this blog makes no representations as to the accuracy or completeness of any information on this site or found by following any link on this site. The owner of this site/blog will not be liable for any errors or omissions in this information nor, for the availability of this information. The owner will not be liable for any losses, injuries, or damages from the display or use of this information. Everything I say on this blog is only my opinion and should not be taken as medical advice in any way, shape, or form.

I say the following with plenty of reservations because Itsan has done so much in getting out the word on tsa/tsw, and has been a great place where all tsw's can come together (except for myself and a few others). My purpose here is to educate and to open up much needed debate on a couple of important issues that affect all tsw sufferers. If enough people come to the same conclusions that and others have, then possibly things will change on the itsan forum for the better.

I want to share my experience on the Itsan forum, a forum where most new suffering tsa/tsw people find their way to, and end up relying on the veterans of the site for their information and support. Itsan isn't just your average forum. Itsan is a support forum for tsa/tsw sufferers, of whom most are extremely ill, and are searching for answers.

Most so called "vets" and forum staff have been on the forum the longest and have either finished topical steroid withdrawal, or have been in tsw for well over a year, and in some cases much longer. However, I learned practically nothing of value from these people while being a member of the itsan forum. What I did learn from the "vets" there turned out to be dead wrong. Why did I learn so little from such a big support group sharing so many ideas and experiences? Am I just too full of myself? Do I think I know it all already? No, no and no. The answer is really quite simple. Itsan is a private forum and all content shown on the site is controlled by the owners of the site. Members are only allowed to see what information itsan wants them to see on their site, and everything else is deleted as fast as it gets posted. This is their right since it is a private forum and one must agree to the terms and rules before being allowed into the group. However, I doubt these people realize what side effects this kind of information controlling can have in a forum that is relied upon by seriously ill people. I certainly didn't at the time.

So, here is my story on what I experienced on the itsan forum. It is not my intention to disparage itsan here, only to share my experience so others can have a better understanding of how a private forum works and not fall victim to falsehoods like I did. I am not into bad mouthing anyone. I want to be clear about that. My intentions are honorable and meant to simply educate others so they don't make the same mistake I did. And hopefully, to get the "vets" to rethink their stance on these issues so that they perhaps will change what they tell new people to tsw. And, to ignite debate on both issues of speeding up tsw, and the effects moisturizing has on tsw healing.

Itsan is a private forum. One must always keep that in mind when searching for information there. It seems to be much more of a "hand holding" support forum than it is an informational support forum. I strongly believe people new to tsw are looking for information much more so than they are looking for kind words of encouragement. I also believe that access to all information is key in what these people need. Therein lies the problem. What I found so difficult to deal with being a member of the itsan forum was it's freedom of speech rules. When any forum, private or public, or any community for that matter, only allows certain viewpoints deemed appropriate by it's owners, or whoever is in control of said community, it creates a situation where only one side of the story is presented, instead of both sides. They limit information under the guise of not wanting to confuse or set expectations in the minds of new tsw sufferers. Admirable, but they apparently don't realize they are already setting expectations by what they do say.

Itsans forum guidelines and stance on speedier healing as of a few weeks ago were as follows:

"As many years of combined medical research and numerous anecdotal experiences have borne out, no treatment has shown to accelerate the healing from topical steroid rebound, red skin syndrome, or withdrawal.  With our current body of knowledge, the only true indicator of healing is the passage of time."

In the itsan forum for example, members are basically told one side of the story by forum staff and "vets", mainly that tsw can not be sped up, so don't bother trying to speed it up via diet, meditation, moisturizer withdrawal, or anything else. The staff and "vets" there tell everyone the only way currently known to get through tsw is the passage of "time". Members are forbidden to disagree, or present their own opinions on this. They can not contradict what staff or the "vets" say or their posts are deleted. Itsan staff and it's vets can make their claims with no real data to back them up, but newer members can't.

The only research I am aware of was done by Japanese doctors and their findings were moisturizer withdrawal is essential for recovery.

Itsan has a large influence over many newly suffering people due to it's increased exposure and support from people such as myself. I feel obligated to speak out since I supported this organization that I feel has unknowingly misled many suffering people. Since I did give financial support to this organization with the idea in mind they were a support forum, I feel a certain responsibility to the people itsan has an influence over after discovering what the truth really is on speedier healing and the damaging effects moisturizing has on people going through tsw. In my opinion, Itsan has a moral obligation to do what is right by these people.

Please bear in mind, that I did not make claims of faster healing on itsan, I ONLY asked that since members can't make claims of different methods to speed up the tsw process, can  staff and "vets" stop making claims that nothing can speed the process, since after all, they don't have studies to back those claims either. I asked this question in response to a reminder post to a different person who was talking about diet. Staff was reminding everyone to be sure and not make any claims of speedier healing for the umpteenth time.

My question made the hypocrisy all too apparent! My post was deleted and I was sent a warning. So, I emailed back a long email expressing my concerns.

It seems to me that it is a dangerous thing for a support forum for sick people to operate under the guidelines of a few people knowing what's best for all others, because if the few are wrong, many suffering people can be misled down the wrong path. And, that has the potential to cause much unnecessary pain and suffering.

Early on I believed what the vets were saying about how we shouldn't bother trying to speed up the tsw process with diet, and how it's a waste of your time and money. Forget ideas about MW. The only healer is the passage of "time". I even found myself parroting the same BS. It really disgusts me that I had done that. I remember deleting a post where I had done it sometime near the end of my welcome on the forum. I had believed what they were saying and was doing the same thing they were. But, in short time I knew this was all wrong and attempted to try and effect policy change. However, Itsan's rules state you aren't allowed to contact forum staff in any effort to change policy.

The belief system is the most powerful thing we have in healing. If we are led to believe that tsw can not be sped up, then that reality will surely manifest itself physically as sure as the sun will rise. If you disagree with my line of logic just look at the placebo effect.

It seems very apparent to me that tsw can indeed be sped up by a number of ways, as can most any healing crisis can. It would be much more supportive for itsan to allow this and other important information to be made available to the people and let them decide for themselves. At least don't constantly tell people that nothing can speed it up. That lends to hopelessness and despair in most people. It also influences people to feel like they have no power over their condition.

Since plenty of evidence has come out showing this line of logic to be completely wrong, I truly expected itsan to make some much needed changes to it's forum guidelines in respect to this matter in light of the information available. And, since it is much more supportive to tell people that yes, it's possible one can speed up tsw, but we just don't know how yet, than it is to tell them not to even bother trying.

Below is a copy of a post I made on a blog belonging to a well know itsan "vet" a few weeks ago whom I will leave nameless. It was deleted right away and I never did get an answer. 

My past post on a well known "vet" blog which was deleted:

(name omitted), with all due respect and sincerity, my opinions on whether tsw can be sped up are not based on how long I've been in tsw. They are based on my life experience and knowledge gained from what I have learned from fighting and beating a deadly disease I had at one time many years ago.

Please tell me approximately how many vets you are referring to in your statement...

"The "vets" on the forum have tried and tested many methods of relief, including diets, supplements and various therapies and have all come to the same collective conclusions about healing times: that nothing really speeds up TSW and it has to run its course."

I would be very curious as to the numbers. Are we talking thousands of vets who have completed tsw, hundreds, or 10's? Also, approximately how many have done it without moisturizing throughout most of the process? I look forward to your answer on this as it will shed a lot of light.

I have recently managed to get myself banned from the forum due to breaking the rules once too many, and apparently offending forum staff. It was not my intention to offend anyone, or break rules, but I am very passionate on the subject and can't keep my mouth shut when I feel a great injustice is being done.

I have tried to make what I felt was a very valid argument as to why tsw can be sped up to no avail. So, I then only asked that since members can not make claims of being able to speed recovery, that staff compromises on the issue for the sake of all tsw sufferers who are looking to the vets for answers, and cease telling members that nothing can speed up tsw healing as well. It would be so much more productive to simply say we really don't know, and not set that "belief" system in place in people.

I feel it is highly hypocritical for the vets and staff on itsan to make such claims with such little evidence, and at the same time not allow members to make the opposite claims with just as much, if not more evidence to the contrary.

The reasons given are there are no real data or controlled studies to back up any claims of speeding tsw. So, I tried to make the argument that there are also no real data or controlled studies to back up the vets claims, other than a small handful of people and their collective conclusions.

The fact is the vets have not tried everything there is to try. And, obviously they don't understand the placebo effect, the power of the mind, or the simple fact that things like good diet, certain supplements, exercise, positive thinking, and many many other things can speed up recovery of all disease symptoms arising out of any disease. That really is not a difficult thing to understand. But it sure seems to be with the vets.

I have read many blogs and just about every tsw sufferer parrots the same thing the vets have said about how "time" is the only healer. It is painfully obvious that these people are left feeling hopeless and helpless believing this falsehood. I even found myself doing the same thing, but then thought "what the hell am I doing"? When I know better.

I think it would be much wiser to allow people to have hope and to feel empowered than the other way around. Telling people nothing can speed up recovery breeds despair.

I'm extremely disturbed that the itsan staff doesn't "get" it. How anyone can not understand that supporting the body and mind can speed recovery is beyond me.

I have shown early on that not moisturizing speeds healing and I have been repeatedly ridiculed and ignored. The recent Japanese conference pretty much confirms what I already discovered on my own, yet it is being treated by certain staff as useless information, since it was not done with controlled double blind studies etc., etc. Many more people are now coming out of the woodwork expressing the same results. Not many have tried doing tsw without moisturizing yet most who have done it were successful.

I'm not saying that not moisturizing speeds recovery. I'm only saying it is possibly one component. I can't believe the resistance by itsan staff on this. But, since the few who have completed tsw did it using moisturizers most of the way, I can understand the bias. The vets need to be a lot more open minded and stop creating an atmosphere of fear on the forum if they want to really help people. I have never seen a forum where I was afraid to speak like I have seen in itsan.

I know the forum has it's rules and to be a member one must adhere to them, so I made the decision that my principles and free speech is far more important to me, and decided to no longer support an organization that I feel is doing so many so much harm. Actually, I didn't decide this completely on my own, itsan decided it for me by not allowing me to express my views to staff, by not compromising, and by banning me.

I have spent hundreds of hours trying to help people on the forum, donated money to itsan, and offered to help raise much more funds and exposure via an eBay charity program. And, all I got in return was ridicule, and treated like an imbecile. (end of post)

OK, it is very obvious to me from my own personal experience, logic, and common sense, that moisturizing not only inhibits, but likely slows healing tremendously. I moisturized in my first 8 weeks only because that was the consensus on how to deal with tsw and I didn't know any better at the time. I relied on what others with more experience had to say (Vets). The consensus was to moisturize throughout the process to stay comfortable since nothing can speed up tsw healing. I strongly feel that consensus was, and still is, flat out incorrect.

My conclusions seem to be confirmed by the information provided at the recent referenced Japanese conference of which you can find a link to in my blog, and in a few other blogs.

Early in my tsw I found that my skin wouldn't heal by being clogged and kept "wet". I concluded my slow healing was due to clogging the pores and not allowing the skin to breathe, dry and naturally heal. So, I quit moisturizing, exposed my skin to the sun early on (also against conventional wisdom) and my skin healed quickly. It took a couple weeks and after my first two days of nearly 90% healed skin I applied a moisturizer again and immediately went back into a flare within hours. It took another 2-3 weeks to heal my skin again by stopping moisturizing and repeating what I did before.

I truly feel if I had never stopped moisturizing I would be a total mess right now. Instead I am doing very well considering, and feel I'll complete my tsw sometime between month 8-12, if not sooner. I'm almost at my 5 month mark and am doing very well considering. I may be totally off base and have a horrible rebound much later down the road but we'll see. If I do, I'll treat it the same way by allowing my skin to breathe naturally which surely enables it to heal quicker than it would by smothering it.

It seems to me that everyone who has completed tsw using moisturizers has taken a much longer time to heal and unnecessarily suffered far longer than necessary. They also seem extremely resistant to the idea of not moisturizing since they themselves didn't take that route. And, also probably due to their strong beliefs in moisturizing. This idea has been pounded into our heads by the medical community for a very long time. So has the idea of using ts!

It is truly a shame I couldn't come to my conclusions via information provided by the so called "vets" on the forum and was led to believe just the opposite of what I ended up having to figure out for myself. It reminds me all too much of how I have been misled by doctors most my life and had to diagnose my self with practically every stinking medical problem I've ever had. However, I do not blame you vets, and do understand why you have acted the way you have. But, I sincerely do hope you will  "adjust" your collective minds and beliefs to this information that is so crucial to healing.

You vets have been so wrong about tsw healing, but yet even in the face of such strong evidence to the contrary, you still hold tight to your collective misguided beliefs like a magnet to steel, regardless of what information is presented. One does not need studies to see and know the obvious. It is beyond shameful for this to continue, because not only has this kept people from learning the information they actually need to know, but it has also contributed to much unnecessary suffering. That has been abundantly clear. I know it's difficult to accept that you all could have possibly completed tsw faster than you did if you hadn't moisturized throughout the process. I know you "vets" don't want to admit you have been wrong, or that you may have unknowingly misled suffering people and caused unnecessary suffering through your misguided beliefs in urging people to do whatever makes them comfortable, and in repeatedly telling members that time is the only healer and nothing else can speed up tsw. We are all human and we all make mistakes. However, It is important to realize when we do make mistakes and try to correct them. This is what I am not seeing and find even more alarming. I also know your intentions were good. But if you really care about the thousands you have so much influence over, as I know you do, you will admit you were wrong and change your mindsets and adjust how you support these poor suffering souls, as well as the new ones that become members of itsan as every day passes.

Again, as someone who has donated his hard earned money and countless hours to help educate and help not only the newbies but also the "vets", I have been deeply offended by itsan staff and "vets", and more importantly, have been extremely concerned for the safety of the many who look to you for help and guidance. It is extremely condescending, arrogant, and somewhat ignorant for those who have gone through tsw longer than others to act as though they know more about healing than ones with less time in tsw do. Just because you think you have been there and done that, doesn't mean you did the best thing. It only means that is how you did it, period.

I started off my early days on the forum by contradicting the "vets" on a couple things, like the vets parroting the medical establishments propaganda on colonoscopies, as well as the conventional wisdom on moisturizing, it was a warranted action on my part to try and bring a proper balance and perspective to what I view as one-sided misinformation, and a continuation of propaganda from the medical community, so members could make up their own minds based on facts, and not based only on the ongoing propaganda and on some tsw "vets" and their own personal beliefs. I backed up my claims with links to information that would open anyone's eyes quite wide if they had taken the time to read it and do further research on the subject. So, I only gave an opposing viewpoint and information which is what people really need to come to their own conclusions based on ALL information available.

As I have said many times, people need to be able to understand things if they are to have hope and feel self empowered. Blind faith only goes so far. And, I truly feel the forum has been like the blind leading the blind due to the controlled way information is disseminated by a very small minority who think they know what's best for the majority. Itsan has a moral obligation to do what is right, not only by it's supporters, but also by the members who look to itsan for guidance. People are much better equipped in dealing with any healing crisis when they have access to all information and points of view, then they do with just one viewpoint.

Again, just because it took a handful of vets 2-4 years to recover from tsw doesn't mean it will take everybody else the same amount of time. It only means you prolonged your recovery via moisturizing, and that's all it means. New people to tsw listen to you and take your advice, and because of you, they believe that only the passage of "time" heals tsw. And, to moisturize all you want to make yourself comfortable since you can only wait for "time" to pass. What pure unadulterated bullshit! Itsan, you should be ashamed of yourselves! But no, that isn't going to happen is it? You hold to your beliefs like moisturizers cling to your skin. You need to be like a reed in the wind, not like an Oak tree.

In closing, those of you who agree with my conclusions, please link your blog to mine and do whatever you can to help make ALL information available to new tsw sufferers. Put links to my blog and the Japanese conference information on your Facebook. Tell your friends and family. Let's get ALL the information out so people can make truly "informed" decisions!

Sunday, November 3, 2013

November 3rd - New Picture Update - Topical Steroid Induced Eczema


NOTE: I didn't take pictures when my skin was much much worse in the first 3 months. Believe it or not the above pictures show approximately 85% improvement over what my skin was like before and after starting topical steroid withdrawal. I didn't start this blog until October and taking pictures of myself never even crossed my mind until after I started this blog.

Currently, my skin is dry and feels good as there are no open skin splits or other bothersome areas (other then night time itching). That is difficult to tell from these pics. When comparing to October the skin on my hands looks improved. It is actually much improved more so than what the pics show because my skin is now much stronger then it was then. The skin breaks are now completely healed again and I am having a much easier time of it. I hadn't taken pics of my arms and legs before, but in the beginning of tsw they were pretty bad. The steroid induced eczema on my left arm ran all the way down to my wrist, and my right leg was worse than my left leg, just as bad as the left arm. I have never used ts on my arms or legs and I haven't had eczema in those areas since I was in my teens or early twenty's. And then, it was just a small spot that went away on it's over time. Childhood eczema tends to go away in adulthood and that was my case. But, I would have an occasional small patch that would come and go in different places on my body through adulthood. However, they were so insignificant they never bothered me. And, it was always just one patch at a time and not multiple patches.

The steroid induced eczema on both my arms and legs has almost completely healed, while the hands slowly improve each week. The hands are considerably improved since MW at about the beginning of month three. And 95% of the pain is gone! No itching during the day but plenty at night. Sleep patterns are improving slowly. Again, I used the potent topical steroid betamethasone ointment almost exclusively on my hands. When I think back to the condition of my hands in my last two months before topical steroid withdrawal, and in my first two months of tsw, I am amazed at what I went through. The 24/7 pain and itching was so intense and relentless in those first two months of tsw it made me very despondent at times. It wears one down physically, mentally, and emotionally after a few months of enduring the healing process. And I mean down! This is why my heart goes out to all of you out there that are going through this. There is light at the end of the tunnel!