Dave's Topical Steroid Withdrawal: 2016

Regarding my Fukitol List Item #2, the "Aron Regime", the following exchange took place between Jeff Kastner and myself on the "Topical steroids - TSW / TSA / RSS - an alternative (AR)" Facebook page. It happened late last night and when I got up this morning I was banned from the group and this conversation no longer exists. I figured this would happen, so I copied it before I went to bed. Here it is. I do not know if Jeff ever responded to my final question. Jeff, if you read this, please post your answer. For those not wanting to plow through the conversation, let me summarize it for you. Jeff and Dr Aron believes that all problems associated with the nonexistent "TSW" is due only to an underlying staph infection that makes the eczema worse. My question to Jeff is that most of my symptoms that I have experienced for the last three years are not associated with a staph infection in any way. What caused those symptoms?

Note: Jeff brought up several things that I intended to address, such as Briana's experience, my comparison to heroin addiction, TSW vets, etc. Also, if I were to do it again I would be more careful with my words. It was nearing 3:00 in the morning and I'd had a couple margaritas. :-)

Khai Shuen

April 8 at 7:44am

Just some odd questions I've been thinking lately. So all of us know a little about tsw right? My question is, since it exist and actually affect thousands of people, although healing process takes LOTS of time, but you can still see improvement in them and why does that happen ( the healing) ? Since the staph is out of control without antibiotics?

PS not trying to confuse or give any wrong info. Just want to know more about what you guys think.

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Michelle Zaparaniuk well first off I think staph is a problem for most but not all, also those TSW people are still often on other meds...just not steroids, the successful ones often radically change diet as well and lastly I think very few actually totally heal. Overall it is a lot if unnecessary suffering in my opinion...I have done TSW and Dr. Aron's plan and know what I would choose..just my opinion

LikeReply3April 8 at 2:41pm

Jeff Kastner Michelle has made some excellent points and motivated me to respond. smile emoticon

I don't think TSW exists at all. It's a social network driven phenomenon but there's zero proof it exists. The doctors who brought TSW to the public were witnessing the same thing that every doctor, at that time and today, was seeing; when you give TS without addressing the staph element, the skin gets worse. When I've looked into each doctor's approach at that point, there's nothing special any of them did.. no studies, no specific protocol to prove/disprove TSW. Instead, they speculated.. and just went with it. I even contacted Dr. Rapaport and asked him about his specific process of discovery and he replied that he saw what the steroids were doing so he knew people needed to stop taking them - that "it wasn't too hard to figure out". That's bad doctoring 101. He created this network of fear because people naturally trusted a doctor must know more than they do but in fact, he's simply got it wrong - as most all other doctors agree. He then put extra work into creating papers to try and create a name for himself instead of spending that time trying to scientifically affirm his theories - which is what he should have done.

So to your question.. it's a good one and one I've considered as well. First off, consider that the majority of people going through TSW do not heal. If you check out the forums, there are people who have been doing the process for years and they're "ok" with raising the time limit after it doesn't work. "I thought I would heal in 2 years but I guess it might take 3" is a pretty common thing to hear. 3 turns to 4 and so on. Many people talk about how they "get better" but is that healing? No.

Why do some people get better? It's quite common to see people finally doing all the things they should have when they start down TSW. They hear about the pain and suffering and they decide to 100% commit to diet (often for the first time) and stop eating tons of sugar, greasy fried foods, etc. They "get better". Also popular to TSW now is moisture withdrawal. What happens when we stop providing staph the means to spread so easy while fine-tuning diet? They "get better". How many people start taking other medications they never took before and suddently, they "get better".

You can take any percentage of the population with skin problems and evaluate them over time. Some of those people will be better after time, regardless of what they do. That's the nature of skin. In time, it improves for some and gets worse for others. The mistake with the TSW phenomenon is that people assume it's a cause/effect relationship of TSW - because the "lucky" percentage who go without treatment and "get better" will post pictures and say "hey look what TSW did for me?!" You see it often in the TSW groups that someone will post and several comments will follow with "Wow.. I was getting ready to give up but you have given me hope so I'm sticking with it" or "that's just what I needed to see today as I was having a really bad day". It spurns people on, but.. the more important question: How many people are actually healing from TSW? From the time I've spent in those groups, it looked like maybe 10% overall would simply improve and very few of those would actually completely heal. That's quite a deviation from the promise that TSW will completely heal. Why is there a "Long Term Vets" section on the itsan website where people admit being in TSW for over 7, 8 and even 10 years.. and still not healed?!

It is a fact that most people going through TSW will not heal. Some may improve for reasons cited above or other reasons none of us may know (environment/geographic location/food choices or vitamins specific to that single person, experimenting with other drugs, etc) but most are suffering for an imaginary condition of "steroid dependence". Doctors who purport the condition/success of TSW (and there are very few) without really understanding it have a lot to answer for. Unfortunately, it's something that will further snowball until the treatment of AE is changed, antibiotics are included as used in the Aron Regime, and people are no longer needing to look for a reason why their skin in seemingly worse after conventional treatment. The "all natural" allure of TSW sounds intriguing after conventional treatment fails. Unfortunately, it's not the answer. If TSW was true, there could not be thousands of people who start the Aron Regime (many of them, months and years into TSW) showing zero signs of steroid dependence - and weening off of topical steroids in time -- and all the while healing.

LikeReply6April 8 at 3:17pm

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David Bupp Jeff, I am nearing my third year of TSW and I have been lurking in this group for a while, afraid to speak up lest I be banned from the group. The Aron Regime is fascinating to me for several reasons and I would like to stick around, not only to learn more about it, but also to defend TSW only when there is mis-information spread about it. I must say that your post is almost as far from the truth as possible. I am one of those "long term vets" that you speak of, and I have heard and done most everything related to TSW. Diet changes? Been there, done that. Infection treatment? Staph, MRSA, yeast, been there done that. Are you, or anyone else, interested in what I have to say? If not, and I am banned, my intentions are to create a Facebook group where there are no limitations on who can join and what is posted. There's a need for that in my mind because anti-TSW's are banned from TSW groups and anti-AR's are banned from AR groups, so a lot of mis-information is spread on both sides, as is evidenced by your post. I would much rather engage in a constructive conversation here. I belong to ITSAN of course, but I am not officially associated with it in any way or form, and in fact many of my posts have been removed from their forum. I merely seek truth. Do you?

LikeReply14 hrs

Jeff Kastner David Bupp Hit me! smile emoticon

UnlikeReply113 hrs

David Bupp Thanks Jeff, I really appreciate that. I will wait, however, until an ETSIN Mod agrees.

LikeReply113 hrs

David Bupp In the meantime, I'll give you a little background. 61 years old, born with eczema, and used topical steroids since they were introduced. The hydrocortisone that you can by in a 3-pack at Costco was a prescription drug back then, and was considered strong stuff. I was told as a child I would grow out of it, but never did. I had moderate eczema primarily on my fingers that was fairly well controlled with topical steroids that would increase in strength as years went by. About 13 years ago I moved from Seattle to Dallas and my eczema got worse, covering my arms. My dermatologist prescribed strong cream and even stronger shampoo (clobetasol). Eventually, nothing worked and I started the classic RSS symptoms. It took me a year or so of suffering and going through several dermatologists until I found ITSAN. I literally had every single symptom. The next dermatologist told me I could not go cold turkey and must taper off (sound familiar?) and convinced me to go even stronger creams and shots. When that didn't work he did a skin biopsy that showed a "drug reaction" (and no infection) and he literally walked me to the door and told me to come back when I needed steroids. At that point my GP sent me to the experts: The dermatology department at UT Southwestern, one of the leading dermatology medical facilities in the US. I consulted with an intern and the University Dermatology Department Chair, and they agreed to help me through TSW, even though they chose their words very carefully, as 3 years ago TSW was not the documented condition it is today. It's been a rollercoaster ride, but they were amazed at my progress. Several times I have been tested for infections. Sometimes positive, sometimes negative and when treated it made no difference to my condition at all.

LikeReply13 hrs

David Bupp You mention that positive results are the result of dietary changes, but Dr. Rapaport has stated that diet changes make no difference at all, and I am an example of that. I tried a few times to eat better, but it made no difference and I essentially ate like a pig through the worst parts. I lost 25 pounds because my body was pouring out heat. I was a blast furnace that downed milkshakes, hot chocolate, sweets, anything that gave me comfort, and I still healed. To be honest, the ITSAN support groups drive me nuts as everyone seems to want to try diet changes, probiotics, homeopathy, salt baths, all kinds of crap. It's a normal human response to try to make themselves feel like they are in control. They are not. If you go TSW, it runs its course in its own time.

LikeReply13 hrs

Jeff Kastner You and I sound like we share very similar opinions about diet. I am not a believer that diet will affect eczema for most people. It certainly didn't for my son and we tried everything. What I was saying above is that a small % of people going through TSW get better and they tend to be all the motivation for the vast majority who never heal. These healed people tend to be people who make several lifestyle changes at once.. and they see an improvement.. and then they holler how TSW works, when it has nothing to do with it. But there is a percentage who will improve with diet. I see it in Eczema Parent FB group every once in a while.. .where a Mother shows a before/after and excitedly announces that "all I did was remove dairy" or something to that affect - and the results do look impressive. Lots of causes for eczema, right? My point is that it works for some but I definitely believe the majority to be small. I will then see that Mom telling everyone to "stop dairy and you'll be healed!" (as an example) but like you, I just have to shake my head because I know that diet will not affect eczema for most. How many times do you hear to "heal the gut and the skin will follow!" ? If only it were that easy. It works for very few. I say let's heal the skin (the largest organ) and the gut will follow. And homeopathy? Salt baths? Stephanie's magical balms? You may as well rub kool-aid on your skin.

LikeReply112 hrs

David Bupp Yup. Homeopathy is complete bullsh*t. As is most, if not all, alternative medicine. I do not agree with your assessment that only a small percentage of those going through TSW heal. My personal experience and the majority of those I am in contact with going through it DO heal. Not sure where you get that information. I do agree that it takes many people longer than expected. Not me though. I knew, as a long time steroid user that it would take me a very long time. It also depends on your definition of "healed". I describe myself as "95% healed" because I look, act, and feel completely normal, but the tops of my feet and fingers still have itching issues. Nothing I can't handle, and otherwise I feel fantastic, and they are slowly improving. And I have introduced no steroids of any type into my body since July 9, 2013. Zero. There's a phenomenon related to TSW that I have experienced with TSW that may lead to your conclusion that not very many people heal: It's a horrific experience, and once you get through the worst parts and start to feel normal again, the last thing you want to do is re-live it by going on FB or forums. I have a blog that I have abandoned for months because I do not feel like going "back there". Maybe its a form of PTSD, I don't know, but it takes effort. Every once in a while a statement like yours is made on the ITSAN forum and the result is a people coming back and saying things like "sorry, I am healed and find it difficult to come back here to post" or some such. There's a lot of healed people Jeff. I stay active partially because I have become a bit of an anti-steroid activist and have actively taken on companies like Baby Pibu that markets a hydrocortisone product for babies.

LikeReply12 hrs

Jeff Kastner I have an itsan forum account and a best friend who's FB account allows me to visit the TSW forums quite frequently (though I've become quite bored with it in the last few months so rarely do anymore). I've probably been a member longer than most everyone in there. You can go there now and find very few "I'm healed" posts. I have seen the same people posting for the last couple years. I see kids that could have been healed in 2 weeks, with quality of life fully restored, still suffering after several years, because their parents are convinced that TS are the issue and they're simply not. It's a phobia and unhealthy. What's happening is a culture is being created whereby it's "ok" for children to suffer for years because they're "warriors". None of these kids care about being a warrior as much as their parents do. Topical steroids aren't hurting these kids - the bacteria is when the inflammation is reduced. It's allowed to run rampant so then, of course the TS get blamed. How do I know? Not a single kid, out of hundreds who were in TSW, have come over to the Aron Regime and suffered from any kind of dependency. I don't believe the junk about people moving on. The Aron patients are usually the most severe around. I will contend that when TSW gets to be too much for some, that's when they go to Dr. Aron. These are the worst of the worst.. and not a single person is affected by TS? And why do these people, most of who were equal or worse than most TSW people, stick around? There are thousands in the group who extol the Aron Regime. Why are there only dozens in the TSW group who stick around? Why do I see kids in there who are 4 years in TSW and still suffering from steroid dependency? It's because they're suffering from a wrong self-diagnosis (most often a Mom who thinks all natural is the best way to heal). Why are there people 7, 8 years and more in the itsan forum and still suffering?

LikeReply111 hrsEdited

David Bupp Honestly Jeff, I think there is a fundamental difference between children going through TSW and adults. Being an adult, obviously, I cannot vouch for, nor do I personally know, any children going through it, and when I talk about those successful with TSW, I'm referring to adults. That's one of the reasons I don't blow off AR, and you will not get arguments from me about AR regarding children. I am not convinced it's not the way to go if you are a child. I'm not advocating it either, mind you... I just don't know. One of the reasons I say this is that eczema is a childhood disease. I don't know how many times I was told when I was a kid that I'd grow out of it. Seems if a child has a terrible experience with topical steroids, however he or she gets through it, whether it is through TSW or AR, he or she will likely still have eczema until they really do grow out of it. I am convinced, however, that what I have had my entire life since adulthood is not eczema, but rather it was steroid-induced-eczema. I am fully convinced that my only recourse was TSW. When I am 100% healed, I am convinced I will not have eczema at all anymore. I already don't where I had it before. The palm side of my fingers, where I had eczema my entire life is completely normal. Not only that, but the skin thinning that I always had is going away. My hands are durable like they have never been before. I watched all those AR promotional videos, and they were all children except for one adult, and that adult was still on steroids and antibiotics. In fact, every testimony I have ever heard save one or two regarding AR is that they are still on it. I guess I don't quite understand how this is different than putting a heroin addict that is going through terrible withdrawal symptoms back on heroin. Can you put them back on heroin then slowly reduce the dose of heroin to get them cured? Perhaps you can. But cold turkey worked for me. Like I said when this conversation started, I do not intend to discredit AR, but only to give TSW a voice as it has worked for me. And the "moving on" thing that you refer to as "junk"... I guess you just called me a liar, but hey, that's okay Jeff. I know what I feel. And blaming it all on bacteria is junk to me. Virtually everyone I know going through TSW, including me, has been repeatedly tested for infection and the treatment, when it was warranted or not, has made no difference. We have staph and bacteria on our skin all the time. All the time. If you swab it it will show up positive. I've had actual bacteria and staph infections before and it's a totally different animal that usual TSW symptoms. Dr Aron's treatment isn't effective because of the antibiotics, its because he is putting the addict back on heroin. Did you watch The Doctors show with Brianna going through TSW where they were all smug at the end for determining all her symptoms were the result of infections? It was edited to make her look like she was so thankful they figured out what was wrong. She has continued to post, as I am sure you are aware, and the result of the treatment for her infection? Made no difference at all. Just like me.

LikeReply11 hrs

Jeff Kastner I actually agree with most of what you say.. including the fact that many adults way be dealing with something else, though I don't believe it's dependency. For adults suffering, they are usually the worst of the worst.. people with severe skin. I think many adults have used too many TS over the course of a lifetime. They used to prescribe the stuff like candy.

Don't get offended now. I had to smile at a couple of your above comments where you told me my post was as far from the truth as possible. I thought.. "Hmm... you mean, you have a different opinion?" It's easy to feel attacked when you view the complete opposite side. I don't agree with TSW at all and think it's an imaginary made-up condition, so that is true.. and I can't hide how I feel about that... but no disrespect to you. I must confess that when I used the term "junk" it's because your comment immediately reminded me of what Joey continually says in an effort to keep morale up.

Heroin and TSW? I see that comparison drawn a lot in the TSW groups a lot. They are nothing alike. Heroin is medically proven to be highly addictive - an opiate that triggers dopamine. TS are only thought to be by TSW groups and Dr. Rat, who can't even give an explanation as to why, other than offering a far-fetched theory on nitrous oxide levels. There's nothing in the medical literature anywhere that can prove TS is addictive in any way.

To your question though.. here's how it's different. My son suffered severely under conventional TS prescriptions. He would get burning inflamed skin immediately following a round of TS and from the time we started TS (at 2 years old), the skin only got worse after every round of TS. It was 10X worse in the 3 years that followed. When I found Dr. Aron, he said "stop doing TS! You're making it worse. That's highly infected!" In one week of combining TS with antibiotic, he was sleeping through the night for the first time ever. We put 6 apps a day on, then 5 and 9 1/2 months later, just as needed. Today, I might put an app or two on every couple months. We don't think about eczema. He lives life and loves it. He's not some heroin-like addicted TS addict. That is a TSW way of thinking only. Doctors don't think that way, nurses, people using the Aron Regime, my current doctor who knows nothing about AR. It's a belief system instilled in the TSW community. There's no merit. My final thought on this.. if over 5,000 people in the group are using the Aron Regime, and not a single person is having a TS side effect, why do people care.. even if they want to call that addicted? If my son maintains perfect skin, has no side-effects and a full quality of life, using TS once or twice every couple months, feel free to call him addicted!

Brianna is a perfect example. I have followed her posts and she seems very sweet. I've always liked her but her problem is bacteria. The Doctors were right but she has gone out of her way to try and prove them wrong. When I read her posts, I can tell where her line of thinking has gone wrong each time.. People do that when they try to convince themselves they know what is best. She had a doctor swab her and prove to her and she was immediate to say in the TSW groups that they were wrong.. on the same day the video was released before she even checked anything out. She had already convinced herself. If she got on the Aron Regime, I would be willing to bet her pain and suffering would be gone for good. She wouldn't be addicted but would be managing with a medical prescription. No side effects and quality of life restored. If that's addicted.. sure beats suffering the rest of her life for a cause.

Keep in mind that there are people on the Aron Regime (AR)who were diagnosed TSA by Dr. Rap himself and they healed up almost immediately on AR after TSW didn't work at all.

LikeReply10 hrsEdited

Jeff Kastner Here's a better explanation on the staph. Of course we have it on our skin all the time.. but much different for those with eczema - and it requires a completely different (longer primarily) method of treatment. http://eczemasense.org/eczema-and-staph/

LikeReply10 hrsEdited

David Bupp That's a website promoting Dr Aron. Sorry, but when I found that out I didn't even read it. It may be true I suppose but it has zero credibility. Would you give credibility to red-skin-syndrome.com?

Understanding Red Skin Syndrome | RSS Causes and Cures

RED-SKIN-SYNDROME.COM

LikeReplyRemove Preview10 hrs

Jeff Kastner Not at all. I've actually communicated with Dr. Rap. He's completely one-sided in his opinions and he and I had some dialogue going for a while. When I continually questioned his methods, he went quiet. His papers have no verifiable evidence. His latest 'white paper' looked like a high-schooler wrote it... but I read it.. every bit of it. I'm astounded people believe anything he has to say.

I thought you were interested in the truth? You're black-balling a site because it goes against your belief system? That's a report on how staph/eczema works... backed with scientific papers.

LikeReply9 hrsEdited

Jeff Kastner I just noticed you weren't in the Dr. Aron site either. I guess I'm wasting my time here. You won't read sites because they promote Dr. Aron and you don't join them because of that either? It sounds like you don't want so much the truth as having it your way. Here's the thing.. I've read and studied everything you have (probably more) but you've read nothing I have because of your bias. That's not a guy looking for the truth. Come back after you read up and we'll have a real discussion. Not being rude but you can't possibly understand all of this if you haven't looked into it for some time.

LikeReply9 hrs

David Bupp So Jeff, what do you think I have gone through for the last three years? I have been repeatedly tested for infections by the country's leading dermatologists and sometimes they turned up positive, usually negative. Whenever they were positive, I followed the doctors recommendation and took the antibiotics. It had no effect on my symptoms. None. Most of my symptoms were not indicative of infections anyway. The itching, the lack of temperature control, the edema, the elephant skin, the insomnia, the zingers, the changes in hair (I used to have straight hair, it's curly now). Are you saying that all these symptoms, all of which I have never had in my entire life, were due to staph infections that the doctors could not find and that medication did not affect? I am cured now, and the only thing I did was stop steroids. That's it. No diet changes, no probiotics, no vitamins, no herbs, no colloidal silver, no blood-letting, no voodoo, no prayer, not even a conversation with Dr. Rapaport. And most important, no steroids of any kind. You say I am black-balling AR. I am not, and in fact and telling you it may very well work for children. Heck, even for adults, although I have not heard of any that are totally free of steroids. They may be a ticking time bomb. I don't know. Time will tell. What started this whole conversation was you blowing off TSW and mis-representing ITSAN members, not me blowing off AR, because I haven't. I am happy for your son. You hurl insults. I don't belong to any AR sites other than this one simply because I'm not going through AR. I've gone through TSW and simply wanted to let people know that people like me exist. The whole staph infection thing makes no sense whatsoever in my case and has been explicitly ruled out, as it has been for many others going through TSW. I'll ask again: What do you think I have been going through for the last three years?

LikeReply9 hrs

Dave's Topical Steroid Withdrawal

Monday, November 21, 2016

Friday, November 21, 2016 - Knocking on Wood

Sunday, July 3, 2016

Sunday, July 3, 2016 - 3 Year Anniversary Flare

Tuesday, June 14, 2016

Sunday, June 12, 2016 - Goji Madness!

Saturday, April 30, 2016

Saturday, April 30, 2016 - The Aron Regime - A Conversation with a Supporter

Khai Shuen

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