There are no miracle cures!

It’s been a little while since my last post as I continue to struggle into my fifth month of TSW. The physical torment and mental torture continues to take its toll on me, although I feel I am staying strong for the most part thanks to understanding and supportive family and friends as well as words of encouragement from fellow sufferers on social media support groups. But damn, it sure is hard.

The topic I want to write about today (at 2am in the morning on another sleepless night) is something just about every one of us going through TSW has dreamed about — finding that miracle cure. Okay, maybe not even a cure, but that one thing that can alleviate the symptoms or speed up recovery enough for us to get back to normality much sooner than otherwise. It could be anything: supplements, changes in lifestyle or diet, exercises and meditation, phototherapy, creams, ointments, herbal remedies, essential oils — you name it, I will try it. And I feel like I have probably tried them all.

I’m going to do future posts on the various supplements, creams and other products I have tried over these past five months and their various perceived efficacies, but the reality is — THERE ARE NO MIRACLE CURES FOR TSW. While I don’t believe time is the ONLY thing that will heal your body — there are scientific ways that should speed up the process — the sad truth is that no matter what we do, we will inevitably have to suffer and suffer for a very long time.

I think it’s important for everyone going through TSW to acknowledge that right from the outset, so there are no unrealistic expectations and devastating disappointment when goals and targets are not met. I, like many others who have embarked on this journey, thought at the beginning that I would be one of the few to make a full recovery in six months or less. I felt I was relatively healthy otherwise and in a positive frame of mind, and I believed I had secret weapons such as potent traditional Chinese medicine remedies, incredible supplements, special creams/sprays, and diet plans. I thought combining all of these ingredients would equate to a super speedy recovery.

Of course, I could not have been more wrong.

I can’t believe when I started TSW on Nov. 15 last year that I thought I might be largely recovered by late February this year, and when that didn’t happen to be still optimistic enough to think it might happen by April. Instead, I have barely left the house for nearly six weeks. Right now, I’m just hoping to be functional enough to leave the house by mid-July. I really want to celebrate my wife’s birthday because she deserves it so much after what I’ve put her through these last few months. That, and because I want to be in tip-top condition when I watch my most anticipated movie of the year, War for the Planet of the Apes!

Having said all that, I don’t want this post to discourage anybody in trying to find some kind of remedy that works for them, something they feel can lessen their suffering or speed up the healing process. As Andy Dufresne once said, “Hope is a good thing, maybe the best of things, and no good thing ever dies.” It’s important to not lose hope during TSW (I’ve seen some people in utter despair after go through this for more than four years, wondering if it will ever end). That is why I don’t understand some people who actively discourage others in trying to find alternative therapies, shooting down any suggestions and insisting that it’s simply a waste of money.

To be fair, I have spent literally thousands of dollars in TSW trying to find something — anything — that even remotely feels like it works. Apart from TCM and acupuncture expenses, new supplement shipments just about every week, and new creams, ointments, sprays, etc from the pharmacy on a regular basis, I’ve also forked out money on a mini trampoline and a red light unit. And the thing is, I don’t know if any of these expenditures have even helped because there’s no alternate reality for me to compare it against. I can’t only trust that I’m doing the right thing and not making things worse or slowing down my recovery. All I can do is conduct a lot of research and discuss it with others who have tried similar approaches.

Now, even IF none of these things have worked, I don’t regret spending that money for one second. Because if just one thing among all the things I have tried has alleviated a bit of my pain and suffering or sped up my recovery by just a little, it would have all been worth it. That’s why I’m still looking around online on most days for any recommendations from TSW warriors, reading articles and studies on the effects of various supplements and therapies. Finances permitting, the agony of TSW is too overwhelming for us to not at least TRY to make the ordeal easier.

The Moisturiser Withdrawal Debate

Whether or not one should use moisturiser during TSW is one of the biggest debates (and in my opinion, one of the profound mysteries) of this world. There are people who swear it was what kickstarted them into healing, while others say it is too agonizing and/or that they did not see sense a noticeable positive difference. I have tried both routes and here are my two cents worth.

One of the first things we learn when we discover we have atopic skin (ie, prone to eczema and other dermatitis) is that we ought to moisturize the shit out of our skin to protect it and thus prevent it from itching. Accordingly, when we go through TSW and suffer severe eczema-like symptoms, the common sense approach is to lather on [enter moisturizer(s) of choice] to alleviate symptoms and make yourself more comfortable.

That is not wrong per se, but TSW is such an unstoppable beast that you will feel like the moisturizer is doing nothing to stop that crazy, itching, flare that cuts deep to your bones. Also, depending on the choice of moisturizer, you are probably very wet or oily or sticky all the time, which cannot be comfortable, and when you scratch, the skin breaks or sloughs off very easily, leaving what’s left behind raw and tender.

That is where the idea for MW comes in. There are several views on why stopping the use of any moisturiser is positive during TSW. The first is actually comfort. To be precise, eventual comfort. When you have used moisturizers all your life — my mother started lathering in on all over my body when I was just a baby — if you suddenly stop it, things can get quite nasty, especially if you are going through something as traumatic as TSW. In other words, your skin will get really dry, and it will itch really bad from the dryness, and you’ll probably be in pain from scratching, and of course the flaking will get even worse. For some, the skin gets so dry that it cracks or splits, which is why it is not surprising that a lot of people can’t stick with MW for more than a couple of days.

However, the MW gurus will insist that, if you stick with it, your skin will eventually feel more comfortable, and it will get very rough, tough, and scratch resistant — once the cracks and splits heal over and the skin starts producing natural oils of its own. If you lose control and go on a scratch fest, chances are the damage will be much less than had you continued with moisturising. How long does it take to get to this point? Most people say a couple of weeks.

Mind you, for some people MW came as a necessity because their skin, especially in the early stages of TSW, could not tolerate anything on their skin. Some even go as far as to say that water would sting. I don’t doubt that for a second because the hypersensitivity is insane during TSW.

The second reason is that MW supposedly speeds up the recovery of the skin. As TSW expert Dr. Fukuya puts it on his blog:

Moisturizing increases the micro-environmental humidity very near to the skin surface. It means the protection by moisturizer works to delay the barrier function recovery.

and

So excessive moisturizing do harm to skin recovery by delaying keratinocyte proliferation. I recommend you should use no or less moisturizer if you want to advance recovery of the skin barrier.

and

The epidermis is proved to produce more cortisol in the dry atmosphere by the experiment using cultured keratinocytes…When the procedure of TSW prolongs and the redness of the skin continues, withdrawal from the whole topical agents sometimes works though it is accompanied by another rebound just like withdrawal from steroids. The mechanism may be the facilitation of recovery of production of inner steroids.

There is a third reason that often gets forgotten, and that’s that moisturising encourages the proliferation of staph bacteria on the skin, which some (such as Dr. Aron) believe is the culprit for the spreading redness and itch seen in RSS. If you stop using moisturiser you don’t give the staph an opportunity to thrive and spread.

On the other hand, there are those out there who believe depriving yourself the comfort of moisturisers is unnecessary and harmful. It just feels non-sensical for some that stopping moisturisers is supposed to help, when the skin is already so dry that it feels like sandpaper and is cracking and splitting, putting the victim through further pain and stress. Furthermore, it is the belief of TSW expert Dr. Rapaport that there is no such thing as moisturiser addiction — ie, the skin cannot get “addicted” to moisturiser like it can to steroids no matter how much you slather on, so it’s not a problem in the long run. In fact, Dr. Rapaport explicitly lists “No moisturizer” as one of the “Misguided Therapies” on his website. And above all, when your face is flaking like crazy (like mine is now), you look like an absolute freak without moisturiser.

For me, doing MW was a daunting challenge but also kind of made sense to me. We humans did not use moisturisers for thousands of years and we ended up just fine, so surely our bodies just find a way to cope with the natural elements. Slathering our skin in moisturiser just prevents your skin from developing that coping mechanism.

Surprisingly, the initial phase of moisturiser withdrawal was not that bad for me. I started about 2-3 weeks into TSW, when my body was at the worst it had ever been, completely red and inflamed and itching like a bitch. In the beginning, I used an assortment of different creams, emollients and oils supposed to keep the skin hydrated — some had antibacterial properties and anti-inflammatory action and added lipids or some missing shit back into your skin — but none of it was working. So I stopped moisturiser cold turkey, and of course it was very uncomfortable, but when your discomfort level is already at 10 out of 10, there’s nowhere to go but down.

So I stuck with MW for the entire second month, most of which was when I was in Japan. I was initially worried because Japan is especially dry during the winter, but as I didn’t take many baths or showers there I wasn’t particularly worried. I did get some splits in my foot from the dry skin and all the walking, so I applied some thick moisturiser there and bandaged it up, but it wasn’t an area affected by TSW.

When I came back from the trip and was entering month 3 of TSW, for some reason I thought I’d try moisturising again. I had this La-Roche “anti-irritation/anti-itch” cream that I had been dying to try. I tried it and nearly died. The cream stung as soon as it was applied to my skin, and then made it itch all night, as badly as that first month had been. I must have scratched away about a month’s worth of healing in that one night.

So it was back on the MW bandwagon again after that, though I didn’t last long again because it was so uncomfortable. A few more weeks later, I got the lauded Avene Xeracalm cream, which is also supposed to be anti-irritation and anti-itch. I spot tested it first this time and it had a calming effect, so I applied it to my entire body. It wasn’t bad, but I couldn’t tell how much it really helped.

Since then, I have gone back and forth between moisturising and MW, and each time I second-guess myself, wondering if I’ve made the right decision. Sometimes I moisturised my body and did MW on the face, and other times I did the opposite. Right now, there is no question: My skin feels much better when moisturised. I have been going through a major face and neck flare for over a month now, and if I don’t moisturise, the skin gets so dry and thick and tight that I can’t move my face or neck without feeling intense discomfort or pain. When it gets real bad I can barely open my eyes in the mornings or open my mouth to eat.

Choice of moisturiser is another huge can of worms.  A lot of say the only thing that doesn’t irritate their skin during TSW is Vaseline (petroleum jelly), and a lot of products are petroleum based, like Dr. Fukuya’s clofibrate ointment, Catrix 10, and several TCM herbal topical remedies I’ve used. However, there are those who say petroleum based products are bad for your skin and overall health, while there are also those who claim it is one of the safest substances around. I don’t know the answer and it’s very frustrating when there is so much conflicting information out there. My personal feeling is that I would avoid it if I could, only because it feels very oily and sometimes can make me itch and hot because I feel like it is sealing in the “heat” under my skin. That said, many have criticised the other “scientific” creams, balms and ointments that I use or have considered using too, citing harmful chemicals in the ingredients. We’re already trying to get rid of on toxin in our bodies (steroids), so why put in another one? It’s all very blood confusing.

If I could offer a parting word of advice, it would be to not worry too much about moisturising or not moisturising and which mosturiser to use — just go with whatever makes you most comfortable at the time. I know it’s sometimes hard to tell because you’re always uncomfortable anyway, but try to listen to your body and do spot or patch tests before slathering stuff on everywhere. Like right now, I’m moisturising my hands and arms because they’re getting so dry an scaly that they literally sting, but I’m not putting anything on my legs because they’re generally fine. The face is still a tough one because it just looks so damn terrifying when it is peeling and flaking everywhere, but putting moisturiser on seems to make it redder and more aggravated. TSW just stinks so bad.

 

 

 

Dr Aron’s Approach — Miracle or Mirage?

Photo caption: Dr. Marvin Rapaport (left) vs Dr. Richard Aron (right)

IMPORTANT UPDATE: I started this blog and wrote this post a while back and totally forgot about it. Why? About 6-8 months into TSW, I finally started seeing improvements. I could finally leave the house without feeling self-conscious. The redness on the body slowly went. The flaking gradually subsided. I would say about a year in, I had about 95% of my life back, and in many ways, it was better than before. I simply appreciated life and everyone in it so much more.

Now, about 18 months in, TSW is deep in the rearview mirror. In terms of skin-related quality of life, I’m at the best I’ve been since…probably my mid-teens (about 20 years ago). I probably still need to shed a couple more layers of skin on my hands, arms and neck before I would say my skin is 100%, but it’s a slow process that I don’t monitor any more. To the naked eye, my skin is entirely normal, better than before I had any flares. I use an oil on my face now (to keep those wrinkles at bay) and nothing on my body. I haven’t tried swimming in chlorinated water yet, but I’ve done Japanese onsens with no problem, and most importantly, I can sweat profusely now without regretting it afterward — one of the biggest issues I had before, even before TSW. I eat whatever I want now, though I try to avoid having too much wheat, eggs, dairy or processed foods when I can and when I can’t, not have it too many meals in a row. The biggest change that still exists is probably that I now have my daily coffee with soy milk instead of regular milk.

But as often as is the case when you’re better, you tend to forget to be good. I’m referring to the diet part. In instances where I’ve eaten lots of the above foods every day and every meal, plus not gotten enough sleep, I still get a bit of an itch on my hands or shoulders. But unlike before, I don’t put anything on it. In the past, it would NEVER go away unless I put a steroid cream on. Now, it just goes away by itself, sometimes in less than 24 hours. 

For total transparency, there are still two lingering effects. The first is sleep. I started taking sleep medication about 7 months into TSW to cope with one of the worst side effects of withdrawal, and I am still on it, mostly because it provides a safety blanket. But I’m tapering off next month after I finish a work project that’s really been keeping me busy and stressing me out. The second is that I have these couple of little growths on the bottom-right side of the back of my left hand, probably about a centimetre apart, about 2-3 millimetres in diameter, less than a millimetre in height. They’re really not noticeable to anyone other than myself. They just keep developing scabs on them, which gradually peel off, but I can still feel the lumps when I run my fingers over them. I assume they will go away eventually, but for now, I kind of like them there, as a constant reminder of what I went through and to cherish what I have.

Anyway, it’s interesting reading back on my TSW experience now. It really does feel like a bad dream. The other day, I started getting a bunch of comments out of nowhere, which brought me back to this blog. Apart from a couple of error corrections (pointed out by readers) in bold, everything else in this post remains the same as when I wrote it.

Anyone who has done their research on RSS/TSA/TSW would have likely come across the so-called “Dr. Aron’s approach”, which is said to offer an effective alternative to the suffering of withdrawal. It sounds almost too good to be true, and yet there are patients who swear by it. I hence thought it would be prudent to have a level-headed discussion about this.

What is Dr. Aron’s approach?

First of all, just what is Dr. Aron’s approach? Whereas Dr. Rapaport suggests total cessation of steroids as the only cure, Dr. Aron believes there is an effective and minimally-invasive method that can achieve the same desired outcome. Essentially, Dr. Aron prescribes his patients a creamy concoction comprising three key ingredients — a moisturiser, a topical steroid, and an antibiotic.

I hear you say, “What? He prescribes more steroids?” Yes, he does, but he claims the harmful effects of steroids are minimised because they are so diluted by the moisturiser, and in any case it appears he does not truly believe in steroid “addiction”. In fact, his view is that the spreading “redness” of RSS is in fact the proliferation of staph, a bacteria we all have on our skins normally but tend to go haywire on eczematic/TSA skin. That’s where his third ingredient, an antibiotic, comes in. The antibiotic presumably kills the staph, stopping the spread of the rashes, while the moisturiser and steroid keep the existing rashes under control.

And according to Dr. Aron and his supporters, his creams can be used in perpetuity if you need, though in many cases he will get you to gradually taper down, to the point where you never have to use it again or only as necessary as maintenance whenever rashes reappear. Sounds pretty good, right? Compared to the agonising suffering of TSW, if I could just apply some cream in a few problem areas every now and then and be no different to a normal person, why the hell would I not jump at it?

Dr. Rapaport vs Dr. Aron

But of course, I remain sceptical. After all, the solution to steroid addiction can’t possibly be more steroids, can it? Besides, Dr. Rapaport has specifically addressed Dr. Aron’s approach on his website and claims to have “debunked” it. The gist is that staph is not the problem and the only reason the cream works is because of the steroids. In other words, it’s just yet another band-aid solution that is merely delaying the inevitable and actually gradually pushing you toward it.

This explanation kind of makes sense to me. While I don’t doubt staph makes our skin more red and itchy, surely RSS is not as simple as that, or else Dr. Aron wouldn’t even need to put steroids in his creams. Besides, I have read posts from people going through TSW who claim to have done skin swabs that show no staph abnormalities. So my guess is that while the antibiotics in the creams may help alleviate the symptoms, it is still the steroids that are doing the bulk of the work. That said, if you don’t believe in steroid addiction, there’s no reason why you can’t keep using them — though that begs the question of why Dr. Aron would advise tapering off (other than to save you money?).

There are other reasons to be sceptical too. For starters, Dr. Aron’s website is called ETSIN (Eczema & Topical Steroids Information Network), which seems conveniently similar to the ITSAN Dr. Rapaport had been affiliated with. It just seems too coincidental to suggest he’s not at least trying a little bit to mislead people. CORRECTION: It has been pointed out by some that ETSIN is NOT Dr. Aron’s website, which is actually www.draron.com. ETSIN appears to be a website created by a group of parents who support the Dr. Aron approach. Secondly, I understand Dr. Aron’s prescriptions are very expensive, upward of hundreds of dollars a month. Contrast that to Dr. Rapaport, who may charge an arm and a leg for a consultation (I hear it’s gone up from US$500 to US$750) but is not peddling any products or miracle solutions — he knows the suffering is bad, but insists it’s the only way. It is not surprisingly why some on the ITSAN and other support forums outright accuse Dr. Aron of being a charlatan. NOTE: Dr. Aron does not sell any creams himself; he provides his special treatment compound prescription for a consultation fee. Doctors who accept Dr. Aron’s approach in parts of the world where the compound can be legally prescribed will prescribe the compound, which is then made by chemists that can do it.

Sadly, there is virtually no calm, constructive dialogue between the two camps. I have joined both TSW and Dr. Aron groups on Facebook, and the vitriol is real and spectacular. As noted earlier, the TSW folk believe Dr. Aron is the devil trying to make a quick buck (I don’t believe that personally; I think he truly believe his method helps people), while the Dr. Aron supporters think TSW folk are idiots for putting themselves through unnecessary suffering (after all, linger eczema may remain after withdrawal), and in cases of putting their kids through TSW, reprehensible parents. I personally think Dr. Rapaport’s curt, sometimes condescending attitude toward those who disagree with him has definitely rubbed some of Dr. Aron’s supporters the wrong way.

Digging deeper

So I went on the Dr. Aron board to ask members whether there are any people who have been completely cured of eczema or RSS using Dr. Aron’s method, and whether they have stopped using his creams forever or need to keep using them in perpetuity. The responses I got were quite interesting. It seems the majority are parents who have put their kids on the regimen because they can’t bear making their children suffer through TSW. And in these cases, the results of Dr. Aron’s approach have been fantastic — either complete cessation of creams or some kind of maintenance dose of once or twice a week. There were a few adults who put their hands up too to say Dr. Aron’s approach worked on them too, but were generally vague about the extent. It seems to me that they are all still on the creams regularly and periodically, but because they can live normal lives, they consider themselves success stories — at least for now. Tellingly, many of them insist there is no cure for eczema (like what dermatologists say), but that Dr. Aron’s approach is the best and safest way to control it.

After reading Dr. Rapaport’s scathing Dr. Aron articles in more detail, I think there is a bit of a misunderstanding here. Dr. Rapaport doesn’t say topical steroids are the devil and that they should never ever be used under any circumstances — in fact, he even prescribes it to some of his patients, but always with strict instructions about dosage, length of use, and a blanket prohibition for use on the face. In seems what Rapaport is railing against is the claim that RSS/TSA — that is, when you are already clearly addicted to steroid use — can be cured using Dr. Aron’s approach. In other words, if you have a bit of eczema and the steroids help, then sure, go ahead and use some. But if you’ve been using steroids for years and have gotten addicted, meaning the rashes rebound and spread upon cessation of use and you’re getting typical RSS symptoms such as the red skin and flaking, then using Dr. Aron’s approach is just making things worse and delaying the inevitable. This is why I think Dr. Aron’s approach might not actually be terrible for children and also adults with only eczema (but not TSA), provided if it’s only short-term use and does not induce addiction.

That said, I believe it is risky. Many of us who have got TSA developed it over a number of years and long periods of clear skin followed by more serious rebounds and spreading. It might be a mistake to think just because Dr. Aron’s approach has cleared your skin for a few months or even a couple of years that you’ve been “cured”, or that you might not eventually develop an addiction before you know it.

Looking back, I truly think my addiction developed when I started using a concoction developed by a Sydney dermatologist for children about five years ago. This regimen was similar to Dr. Aron’s in that it used steroids diluted in moisturiser — there was a morning cream with a thinner moisturiser and a low dosage of hydrocortisone, and a night cream with a thicker moisturiser and a low dosage of Elocon (mometasone). The major difference was that there was no antibiotic, which Dr. Aron advocates insist is crucial. Anyway, I started applying this cream liberally to my entire body and face when my eczema got worse about five years ago. I believed the low dosage meant it was safe, and more important, it worked like a bloody miracle. I had visibly smooth skin with no rashes whatsoever and it made me feel as normal as I had for years. Coupled with Xyzal, an antihistamine, I genuinely thought I had “beaten” eczema for good, and this honeymoon period continued for at least a couple of years before TSA reared its ugly head.

I didn’t use the cream constantly because my skin would be cleared within several days of use each time. But without fail, the rashes would come back eventually, and slowly and gradually, it took longer and longer and more and more applications to clear. Before I knew it, I was flaking skin non-stop and flaring up as soon as I stopped using the cream or tapered down. Even the traditional Chinese medicine that worked so well in the past stopped having any effect. In other words, my eczema had developed into TSA. This I am absolutely certain of. If only, knowing what I know now, I could turn back time and try to heal my eczema naturally from within by avoiding allergens, healing my gut and reducing stress — then perhaps I wouldn’t be enduring the hell I am going through now.

Conclusion

This is what I believe happened to me. I have no way of proving it. What I do hope is that there can be more a more civil discourse between people who have taken the TSW plunge and those who believe Dr. Aron’s approach is the way. We are ALL suffering here and looking to cope the best way we know how. Desperation makes us do desperate things. Some are strong enough to do TSW, while others believe alternatives such as Dr. Aron or immunosuppressants are more practical.

As for my future, I currently have no plans to stop TSW (I’m a little over 4.5 months) and switch to Dr. Aron’s method. I know the road ahead is long and arduous, but I just have too many fears and doubts to go back to a steroid-centric approach. I worry that Dr. Aron’s creams are merely a long-term band-aid solution that merely continues to suppress the symptoms while allowing the immune system to be more compromised, and that it will all eventually come back to bite me even harder down the track. It might be years or even decades later, but I am terrified that there will come a day when his creams stop working and I’ll have no choice but to keep upping the dosage (causing further harm to my damaged immune system) or restart the TSW process — except this time it will be even more severe due to the extended use. That is why I genuinely fear for the babies and kids who might seem to be doing very well right now on Dr. Aron’s regimen. I hope I am wrong. I truly do.

Having said all that, I would definitely be willing to switch to Dr. Aron’s approach if I can be certain that it is a “permanent band-aid” capable of being applied for life without eventually losing efficacy or causing other major health problems. The suffering of TSW is simply too egregious to not consider this alternative. Unfortunately, I have yet to come across a single person with RSS/TSA (as opposed to eczema) who has been on Dr. Aron’s creams for long enough to say definitively that offers a permanent solution. If you’re out there, please let me know.

UPDATE: Someone has come forth on the Dr. Aron Facebook page. They had eczema most of their life before developing TSA/RSS symptoms. After going through TSW for 6 months, they switched to Dr. Aron’s approach and now has near flawless skin. The itch supposedly went away almost immediately and skin was clear after just 10 days following 5 applications a day (3 on face). Now they spot a couple of treat problem areas 2-3 times a week, though on a good week they can go without using the cream completely. They are convinced that they had bad staph skin colonisation, and it was the antibiotics in Dr. Aron’s cream that took care of it.

However, lingering doubts remain for me. If staph colonisation is the main problem of RSS, how does that explain all those people who healed naturally through TSW without even treating the staph? Also, doesn’t using antibiotics to kill the bad bacteria on the skin also kill the good bacteria too? And none of that explains the other symptoms of RSS, such as the weird sweating, the insomnia, the elephant skin, nerve pain, and so forth. Spot treating 2-3 times a week was actually not too far off from where I was at before too, so I feel like things could still eventually spiral out of control. I am however keeping an open mind and will keep my eye on further developments.

 

Does diet really matter during TSW?

That is a loaded question. I’ve read a lot about both sides of the fervent debate and these are my thoughts.

On the one hand, there are those who swear by the advice of TSW guru Dr. Michael Rapaport, who claims that diet and nutrition have absolutely no bearing on the withdrawal process. TSA/RSS is an iatrogenic condition caused by steroids and the only thing that helps is cessation of use — everything else is superfluous. In the FAQ section of Dr. Rapaport’s website, he explicitly states in response to why cutting out gluten seems to help during TSW: “The process of withdrawal takes months to years and there are so many ups and downs spontaneously that no credit can be given to diets, bath additives, anxiety reduction etc. etc. Any perceived benefit is purely coincidental and not causal.”

On the other hand, there are those who take a more holistic approach to healing from TSA/RSS and insist Dr. Rapaport is wrong — diet does play a crucial role in both speeding up the recovery process and alleviating TSW symptoms. Proponents of this stance point to a couple of things to back up their argument.

1. Diet/nutrition can address Th1/Th2 imbalance

I don’t profess to be an expert on this topic, but essentially, the human body has both T-Helper 1 (Th1) and T-Helper 2 (Th2) immune cells. Th1 is more immune stimulatory while Th2 is more immune deficient, and they need to be in balance for our bodies to be fully healthy. Most people tilt toward one side or the other, and if it tilts too far our immune systems develop issues such as eczema (Th2 dominant) or psoriasis (Th1 dominant).

When our bodies go through TSW, the Th2 dominance we likely already have gets tilted even further to the extreme, which is why we get so much inflammation. Some believe recovering from TSW ultimately means rebalancing the Th1/Th2 imbalance, which means increasing Th1 and/or reducing Th2 in the body. This is where diet and nutrition come in, as there are many foods and supplements that naturally shift the body toward Th1 or Th2. Check out this Self Hacked post for more information.

2. Diet/nutrition can inhibit the release of nitric oxide

Again, no expert on this field, but from what I have read, nitric oxide is the main mediator of TSW symptoms in that its release causes much of the blood vessel dilation and skin damage we see during the process. While generally a good thing for healthy bodies, excess nitric oxide release during TSW has been blamed for everything from the red skin to the body odor to the oozing/weeping. It’s nasty stuff, meaning during the TSW process we should avoid foods that boost nitric oxide (here are some examples) and possibly take supplements to inhibit nitric oxide, such as vitamin B12 (only in Hydroxocobalamin form).

I must say that, after reading arguments from both sides, I tend to side with the “diet matters” crowd. There are plenty of people who insist that diet and nutrition makes zero difference and claim as proof their own recovery without watching what they consume. Others say that TSW is such a harrowing and nightmarish process that we should hold on to any pleasures we have in life, and this means being able to eat whatever we want. But we really can’t know for sure whether their recovery would have been faster or if their symptoms would have been less severe had they followed a stricter diet or taken certain supplements. However, I have personally been on a pretty restrictive diet myself (no gluten, dairy, eggs; low sugar and grains in first few months) and I know I keep second-guessing myself, wondering if I am depriving myself of things I could eat for nothing.

That said, my diet restrictions are not random, as I did have allergy tests done which revealed that I am severely allergic to dairy and eggs and moderately allergic to gluten — at least during this current TSW phase (I had consumed these products without any issues all my life). I just think it is better safe than sorry, as TSW is already so difficult that if I could just make my suffering a little less unbearable or speed up the process then it would be worth a try. Importantly, I am also determined to rid myself of eczema once TSW runs its course, and making these dietary changes to rebalance my body could very well inch my body closer to that goal.

I feel Dr. Rapaport might be right in that TSW simply needs to run its course, and that, all other things being equal, diet might make no difference one way or the other. But the thing is, we are not all made equal, and some of us have pre-existing conditions that caused us to reach for the steroid creams in the first place, such as eczema. And many of us know (or are convinced) that diet and maintaining a healthy gut plays a huge role in keeping eczema at bay. I therefore don’t see the risk in improving your diet during TSW or why people can be so against it. After all, it can only help.

In the end, I say go with whatever makes you most comfortable. Like most things in TSW, I believe there is probably a trade off of some kind. In the case of diet and nutrition, it could very well be speed of recovery/severity of symptoms vs being able to eat what you want.

Is it really TSA/RSS or could it be something else?

As someone who reads posts from the Facebook TSW support forums every day, I see a lot of people who are treating their condition as TSA/RSS and undergo withdrawal accordingly, believing that their condition will eventually be resolved by ceasing topical steroid use as claimed by Dr Rapaport.

However, I also wonder how many of these cases are genuine TSA/RSS, and how many are actually just eczema cases with other underlying causes that have not been addressed. This is particularly the case for parents who believe their children have TSA/RSS despite a very short period of usage and/or low potency. It just seems odd to me that children can develop an addiction to topical steroids in say a month or two of normal use or using just a handful of times in a number of years, and yet there are parents out there who force their children to go cold turkey without first looking into other possible causes or solutions.

This highlights one of the biggest problems with TSA/RSS — the vast majority of cases are self-diagnosed. Unless you’ve forked out the money to see one of the few specialists in the world who even acknowledge TSA/RSS exists — like say Dr Rapaport, or Dr Fukuya (when he was practicing) or Dr Sato in Japan — chances are you are merely “guessing” that you have it.

Of course, ceasing steroid use can never be a bad thing, but it’s also dangerous to assume that simply stopping steroid use will solve all your problems. After all, TSW is a harrowing process, a living hell I would not wish upon my worst enemy. And it can take months, if not years. It should be the last thing a child should be subjected to. If you’re going to take the long leap into the abyss, you better be damn sure you’ve actually got it. But how?

A good starting point is the ITSAN checklist which sets out the most common symptoms of the TSA/RSS. For convenience sake, I have reproduced it below.

The problem is, a lot of these symptoms could be just eczema-related or due to other conditions the person has not identified. There are, however, some symptoms that appear to be unique to TSA/RSS, and these would be: Rashes gradually spreading to new areas over time, progressively requiring higher dosage steroids to achieve the same efficacy, flaking of the skin, redness all over the body including areas where steroids were never applied.

For me personally, I’ve had most of the symptoms described above thus far, with the exception of enlarged lymph nodes. Even so, and despite usage that spanned decades, it took me a while before I was convinced that I had TSA/RSS. As I noted in My Story, there came a point when I suddenly realised that my previous treatments for eczema stopped working or almost stopped working. It was so obvious, and it came with serious flaking, which I never had before. It got to a point where I had to either take oral steroids or use topical steroids daily in order to keep the rashes at bay, and as soon as I tapered I knew a flare would be forthcoming.

My only doubt was that I didn’t think I had the “burning” sensation many RSS sufferers were talking about. My skin did get crazy inflamed and felt very hot to the touch, but I wouldn’t go as far as to say it burned. And when I started TSW anyway and suffered beyond anything I could have ever imagined, my wife started worrying that perhaps I had some other factors either causing or exacerbating my symptoms. A TCM doctor took one look at my yellowish/greyish tongue and concluded that I had a very inflamed gut. For a while, I was convinced I also have/had leaky gut and/or candida. The more you read up on these things, the more you become a hypochondriac.

Instead of continuing to pour time into reading more conditions I might have had, some of which was contradictory anyway, or spending thousands more on supplements I probably did not need, I finally decided to do the smart thing and get myself checked out with a series of blood and urine tests. The doctors at hospitals or clinics might not agree with or even know about TSA/RSS, but they can’t refuse to run tests for you.

I’m so glad I did, because it ended up removing a lot of lingering doubts. It wasn’t cheap, but it was worth every penny. I first got a blood test done at a hospital, which was not very comprehensive, but showed that my cortisol levels, at least in the morning, were normal. All other health indicators were within normal range, except for my bad cholesterol, which was slightly on the high end but nothing serious. My eosinophil levels, which indicate an allergic disposition, was also higher than normal, but this was expected given my condition.

I then got a series of more comprehensive tests done through a naturopath, who didn’t really know much about TSA/RSS but was willing to hear me out and keep an open mind. For starters, the tests showed that I didn’t have candida but I had small intestinal bacterial overgrowth (SIBO), which is arguably even more annoying. But there are different approaches to tackling candida and SIBO, and I never would have known this would the tests.

In fact, SIBO could be the very reason why my eczema spiralled out of control in the first place and needed so much steroid use to contain it. You see, about 4 years ago I started taking an antihistamine called Xyzal, and it pretty much liberated me from eczema. I didn’t itch and I didn’t get any rashes for a very long time, which gave me a false sense of security. As a result, I ate very poorly, with lots of sugar, dairy, gluten and fried foods. I also took a lot of whey protein as I was working out a lot, never realising that all of these things, along with the antihistamine itself, was doing serious damage to my gut lining. Later on, a period of serious stress followed by an illness that kept me on antibiotics for a whole month might have been what pushed me over the edge.

Anyway, I am now taking a herbal supplement to kill the SIBO, and I’m also taking probiotics (of course) to put the good bacteria back in. The other thing the tests revealed was that I was lacking in vitamin B6, which came as a surprise as I took a multivitamin loaded with B vitamins, including B6. The naturopath prescribed me an “activated” B6 supplement, and I guess we’ll see how my next test turns out. Importantly, the tests also showed that I didn’t have any thyroid problems as I had suspected (due to family history), and that my liver and kidney functions were normal.

On top of that, my allergy tests revealed that there were no foods I was immediately allergic to (IgE allergy), but I did have some foods I needed to avoid because of IgG allergies, which builds up in your system over time. Not surprisingly, these were wheat (moderate), dairy (severe) and eggs (severe), foods I had consumed practically daily all my life. Interestingly, in the IgG test I had done four years ago, I was severely allergic to wheat but only moderately allergic to dairy. It’s possible that, because I had effectively cut out wheat from the start of my TSW journey, the wheat allergy was already starting to fade. Either way, I’m going to stay away from wheat and dairy until at least October — the recommendation is 6 months for severe allergies, 3 months for moderate allergies, and then sporadic intake thereafter. In other words, it does not mean I would have to stay away from some of my favourite foods (pizza, dumplings, chocolate milk) for the rest of my life. I just need to be careful and consume in moderation after my body is clear of the allergens built up in my body over time.

Diet and TSW is a touchy subject, one I hope to do a post on shortly. For now, all I will say is that I am hoping I will eventually get my old life back for the most part and be able to live on a non-restrictive diet. Several people with medical knowledge, including my current naturopath, have all said to me that you can basically eat whatever you want as long as your gut is healthy. So that is what I am working toward — a healthy gut — which I am praying will also take care of my eczema problem once TSW has run its course.

I’ve gotten off track a little, so allow me to steer the topic back to the question of being sure that you really have TSA/RSS. Can you imagine going through TSW symptoms for months or years and then discovering that you could have rectified the situation through other means? What if you could have spared your child the agony of TSW? That’s why I recommend getting as many tests done as possible to be as sure as you can that you don’t have any other underlying conditions either mimicking TSW symptoms or exacerbating them. You might not find anything in the end, but at least you’ll have peace of mind.