Thursday, May 25, 2017

Thursday, May 25, 2017 - A Graph





This graph is a symbolic representation of my major symptoms just prior to and going through topical steroid withdrawal.  It is not based on a detail log, rather it is from memory and is filtered to eliminate confusion from the "Zyrtec withdrawal" I went through before I knew what RSS and TSW was.  Note that many lesser symptoms are not shown at all, such as edema (swelling), elephant skin, infections, enlarged lymph nodes, and oozing.  Each major peak shown after starting TSW reflects an approximate one year cycle of major flares, each less severe than the one prior.  Keep in mind that I was born with eczema and am a 50 plus year user of topical steroids across the entire strength range.  You mileage will vary. 


I wanted to use this graph to make a few points:


1.  TSW is one hell of a roller coaster ride.  I was never suicidal, but the peaks were definitely in the "just shoot me now" range.  The magnifying glass thingy illustrates that although the curves shown are smooth, drastic changes can happen on a daily, even hourly, basis.  The analogy is that the main curves are the rollercoater tracks, but it's a wood rollercoaster and you get shaken around a lot.


2.  It is my opinion that there's not a damn thing one can do to make the ride any shorter or less severe.  It is human nature to want to control one's environment, but other than anti-itch medication (hydroxyzine) and sleeping pills (Ambien) there is nothing that has any non-anecdotal evidence that it does anything at all to help.  I've posted about alternative medicine before, and may again, but for now, there's a joke that perfectly summarizes the issue for me:  You know what they call alternative medicine that works?  Medicine.


3. Speaking of alternative medicine, TSW has one primary feature, that roller coaster part, that makes it perhaps the most susceptible condition one can have where false-causal relationships can be made.  Let me illustrate.  Consider Point A on the graph.  If at this point you were to give something a try, say probiotics, you would be absolutely convinced that this change had an awesome affect on your symptoms.  You'd go on Facebook TSW support groups and yell "Benghazi!", oh wait, wrong subject, you'd yell "Gut health!" at the top of your keyboard lungs and feel smug that you had made a discovery that will make you loved and admired. 


For me, and this is a true story, about at the "Point A" time I had given up on diet changes and was eating pretty much anything I wanted.  I was still eating good stuff, my wife assured that I would, but I was eating ice cream, having hot chocolate, candy, whatever made me feel that life was worth living, especially since I was losing weight due to the fact that I was a nuclear blast furnace.  I decided mere ice cream was not enough, so I poured on some of that Smucker's chocolate hard shell ice cream topper crap, you know the stuff full of the bad fats that solidify when cooled, and I was in heaven, at least for the 30 seconds it took to shove it in my pie-hole.  I'm not kidding, the very next day my rollercoaster car pointed down and I accelerated towards normalcy like never before.


Do I think that Smucker's chocolate hard shell ice cream topper was the reason for the sudden improvement?  Of course not.  But the evidence that it was is as strong as any claims I have seen for anything else, such as leaky gut, homeopathy, anti-histamine foods, alkaline water, ph balance, urine therapy, blah, blah, blah.


What could have happened if I decided to pour on the Smucker's at Point B?  Well, I could just as well be convinced that Smucker's hard shell ice cream topper should be tossed in the garbage right along with my Topicort.  And I'd be wrong.  Well, about the Smucker's chocolate hard shell ice cream topper anyway.


Here's the bottom line:  Nobody, and I mean nobody, can claim that anything they have done has had an effect on their healing.  Why?  Because they have no way of knowing what would have happened if they had NOT done it.  This is the definition of anecdotal logical fallacy.


The only folks that could make any claims about changes are those familiar with many cases of TSW and have held their hands through the ordeal.  Dr. Rapaport has done precisely this for thousands of patients and he makes the outright claim that dietary changes have no effect.


By the way, I feel fantastic but minor itching and rash have reappeared on my right hand and right foot.  I am coming up on my four year anniversary and I am hoping that even though I can hardly call this a flare, it is my last one.  Even if this is my steady state condition I would be okay with that.


Hugs from Texas!

3 comments:

  1. Over on the ITSAN Red Skin Syndrome Support Group, I was asked the following great question regarding this graph, and I thought I'd post my answer here

    "David, I agree with your point about causation being very uncertain and unclear. I'm curious to know,though, do you think there's ever a point when you can say that a certain thing caused either improvement or worsening?"

    Honestly, no. The irrefutable logic is that you simply do not know how you would have fared if you did not do that certain thing.

    Here's an example. Early in my TSW my dermatologist suggested I try UVB light therapy. I decided to try it. I did some math and quickly determined that it would be cheaper to buy a light box, and I found a 6 foot, 6 bulb, unit nearly new unit on Craigslist for a grand. I bought it, and have been using it off and on since then. There really seems to be no correlation to my well-being, but I cannot come to any conclusions. If I didn't use it, I may have been much worse, I simply do not know. I presume that it works based solely on the fact that my dermatologist recommended it and I assume that she has seen a lot of patients and thus can form an educated opinion about whether or not it is helpful.

    The same argument goes for virtually everything that folks recommend on here, whether it be dietary changes, herbs, vitamin supplements, Th1/Th2 imbalance, whatever. They claim it worked for them, but they cannot possibly know whether it did or not. And even if they can provide scientific evidence that, say, probiotics helps eczema, the bottom line is that we do not have eczema. We have RSS initially, then the symptoms of TSW if we decide to go that route.

    I know of only one individual, Dr. Rapaport, who pioneered the entire concept of TSA, RSS, and TSW, that can make a valid argument about whether things people try actually work or not. He has held the hands of literally thousands of patients , and he claims outright that dietary changes have no effect. He even claims that adding stuff to baths, such as DSS, has no effect. He relies on only three things beyond time that can help alleviate symptoms, all of which are mainstream medicine: Antihistamines such as hydroxyzine (Atarax) to help itch, sleep aids, such as Ambien, and in severe cases (about 10%) immunosuppressants.

    Continued...

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  2. Continued...

    This is not to say that if you have are-existing condition that requires a special diet or drugs that you can ignore that. Of course not. In my case, I have suffered from eczema my entire life, from birth actually, but I have no other symptoms. I made it through TSW (and yes, I realize it is not over yet) with merely doing whatever it took to make myself feel better, whether it be hot chocolate before bed, spending hours in a hot bath, or slathering myself in a cancer-inducing, petroluem-derived chemical nightmare (if you were to listen to folks here) called Vaseline.

    Every time I post something like this it results in posts like this: "I agree with everything about Dr Rapaport except he is totally wrong about diet!", followed by a description of how a paleo diet, for example, helped them tremendously. This is the definition of anecdotal evidence, and it is literally useless. I am constantly amazed how so many are suffering because a doctor has told them to use TS, yet somehow when anonymous folks on a web page tell them to "jump!", they immediately ask, "How high?". It's normal human behavior to try desperately to control their environment when in fact they have no or little control.

    The reason I come here occasionally and post is I often see advice given that s counter to what Dr Rapaport has testified to (and is supported by my own experience). For example, somewhere on this thread today someone said "Don't take baths!". Bullshit. Baths, sometimes 4 or 5 per day, were a godsend to me, and where the only thing that made me feel even halfway normal.

    Anyway, I'm getting carried away again, but the bottom line advice from me is to relax (yes I know that's not possible, maybe a better word is "accept") and do whatever makes you feel better. When you read about alternative medicine advice, especially if it is stated as fact, before you try it do a little neutral internet checking. Wikipedia, as flawed as it is, is an good place to start. And if someone refers you to a page where a product is sold, whatever claims made there have zero credibility. That doesn't mean the claims are wrong, it just means that that page is not a reputable source.

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  3. I discovered I had blog comments turned off. Fixed! Please feel free to comment!

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