|Sep-Oct '08 | briefing |mail | interviews | articles | psorchat | don't say this |flaker creativity | flakers' jargon | other places | archives | send mail | ed dewke | search |acknowledgments | legal stuff | Flake: Confessions of a Psoriatic | ©2008 Ed Dewke|
A Diet That
Works For Me
Dear Ed, Thank you so much for FlakeHQ. Your website and kind responses are a light in a frustrating battle.
I developed acute guttate psoriasis on June 29, 2007 (one year ago). I was diagnosed on August 5, 2007. I did a lot of crying in July not knowing what was going on with my body. My arms, torso, legs and feet were covered in bright red bumpy, flaky lesions — over 100 on a single foot and thousands upon thousands elsewhere. [arm photo taken 8/14/07].
Once I was diagnosed I could look back and realize the trigger for this psoriasis was probably strep throat in mid June followed by an atypical diet of acidic and sweet food plus 2 glasses of wine each evening for a week leading up to the guttate psoriasis eruption. I had strep throat many times before, but usually don’t drink or over-eat plums and other acidic foods which is possibly why psoriasis never presented before.
I suspected diet was involved and your website gave me the Pagano link and other diet resources. Once I started the diet, the itching stopped and I slowly improved (my skin did get worse before it got better). I still had many re-eruptions but they started to taper off. Five months after starting the diet, I could wear short sleeves again and my torso was pretty much clear. I started wearing shorts again in June 2008 and my pigment spotted legs aren’t always noticeable [arm photo taken 4/24/08].
I tell you this to thank you for the resources and to share my treatment in case someone else may be helped. My treatment started and continues with prayer. Next, the dermatologist added Keflex for 40 days and steroid crème Triamcinolone Acetonide Cream USP 0.1%. I’ve tried a few other ointments as well like Taclonex, Dovonex and Clobex. I’m not sure if any of these helped although my preference is Taclonex. I also took daily baths with Aveeno Oatmeal and BeautiControl Therapeutic Bath Minerals (with Dead Sea Salts) and spent time out in the morning sun. I had immediately cut out alcohol and fruit but discovered the good fruits I could eat from Pagano’s book.
In mid-August, I began following this Pagano-inspired diet and that’s when I started getting better.
My Psoriasis Diet
I also started to see an alternative doctor (www.healthquestlosgatos.com). Dr. Bartsen was recommended to me 10 years ago and I finally had a strong enough reason to make an appointment. I started a supplement regimen based on my unique health indicators. Now that my body is getting more in balance, we are peeling away the layers of issues to get at the heart of the toxicity that is causing the psoriasis. Mercury levels were double the maximum they should be so I am getting rid of mercury. My liver was stressed so I supported my liver with supplements. The liver cleansing diet is very similar to the above diet and also eliminates corn and soy. My body is still very acidic, but I feel awesome and I have a plan for continual improvement.
Ed’s Response: Thanks for sharing this wonderful report on your well-earned success. If there were such a thing as a Doctorate bestowed on self-learned psoriatics, you’d be a recipient with honors.
If we all analyzed and recorded the onset (presentation) and progression of our psoriasis, and kept written track of the things we have done to treat it, we’d be better off. For this reason, I think KK’s report warrants an explication.
Three things complicate a flaker’s search for relief.
The variability of psoriasis starts with its onset. Many people don’t know what triggers their P. (For the past 20 years, “stress” has become the straw dog. I’ve always questioned the usefulness of blaming “stress” because, without a clinical understanding of how our stress is manifesting, we are simply bandying about a very vague concept.) The only health event known to trigger P when an individual has a genetic proclivity to flake is strep throat, which triggers, typically, guttate psoriasis. Because KK had strep prior to her first onset of P, and because her first onset was guttate-like, strep as her trigger is a safe bet.
Another wide and significant variable of P is its severity. We use an index that ranges from mild (up to 3% of one’s skin affected), through moderate (3-10%), to severe (more than 10%). The surface area of the palm of your hand is considered 1% of your skin. This severity index is useful in studies and determining appropriate therapies to try, but it fails to indicate variables in the overall effect psoriasis has on one’s life. While it can be assumed true that someone with over 10% coverage is “severe,” it’s not always true to assume someone with 2% is not severe. If that 2% occurs on the face or hands, for example, the consequences can be severe.
Variability complicates a flaker's search for relief because characteristics of onset and current indexed severity are too often considered the only indicators of an appropriate treatment. Someone who starts mild and over years has a slow enlargement of affected area may never seek special medical help for the problem. They have time to adapt. They “put up with it.” They suffer because they expect to. In the days before numerous effective drugs were available, this was a matter of course for the slow-to-worsen flaker. People over 50 today come from those years when “adaptation” was more accepted because alternatives were few.
Another variability has to do with “flares” and “rebounds.” A “flare” is a sudden worsening of P that may come as a surprise or be predictable. One thing is certain: If you don’t keep track of your flares (a diary is a good idea!) it will be hard to guess and harder to determine what triggers your flares. As any seasoned flaker will tell you, avoiding triggers is an important part of controlling the disease — but you must know what those triggers are.
“Rebounds” are cases of worsening P after a treatment, or therapy is stopped. Some of us have terrible rebounds, others hardly rebound at all. The important thing is to determine what your rebounds are like and to take appropriate countermeasures. When I was dependent upon topical corticosteroids my derm and I concocted a rotating regimen that worked me through various potencies at intervals. This helped primarily because topicals tend to “wear out” their effectiveness over time, but it also helped prevent rebounds. My most severe rebounds occurred when I stopped using any systemic medicine (oral meds or injected biologics). My doctors and I quickly learned the best way to control my rebounds from systemic meds was to step down use of the current one while overlapping and gradually increasing dose size of the new med. Please note this isn’t necessarily a recommended approach. It is simply an approach that works for me.
Treating psoriasis can be complicated. I think I’ve illustrated this in my discussion of variables. The most complicated aspect of treatment is finding one, or a combination of multiple drugs or therapies, that works within the parameters of your disease as defined by your variables. The second most complicated aspect of treatment derives from the fact that your variables will probably change over time. What worked well for you five years ago may no longer work that well. Something you tried unsuccessfully two years ago might work today if you tried it again. And the third complicating aspect is our human nature to become complacent when something we try works and we are given a few weeks or months or years of freedom from P.
As we all know, right now we have no cure for P, and that means effective treatments are palliative (subduing the symptoms without curing the disease). The more I learn, the more I am inclined to believe complacency itself is a P trigger — at least for me. That’s why it is important to keep notes. When a lesion pops up, note it. What can you think of that might have triggered it? Some break in routine? A breach of diet? A too festive night out? Started or stopped taking medicine for something else? A vacation? Lack of a vacation? It could be anything you might think of or something you don’t think of. The thinking alone combats complacency. The next thought, of course, is “What should I do about it?”
Managing psoriasis is costly. Frankly, I’m amazed that so many people who are uninsured or underinsured can sometimes manage it so well. KK’s therapy documented here tells an eye-opening story. The topicals she has used under a doctor’s prescription aren’t necessarily cheap, but her dependence on them is durable. Her diet is what has been most responsible for her improvement and is probably what she can depend upon the longest (if she doesn’t become complacent!). All P diets of which I’m aware tend to raise the family grocery bill, at least initially, but there are tradeoffs involved that tend to level the costs somewhat. (If you have been used to fresh ribeye steaks a couple times a month and move to KK’s diet you might actually SAVE money!)
The most effective group of P meds are, frankly, unaffordable unless you are well-insured. I mean, of course, the whole family of biologics (Enbrel, Amevive, Raptiva, Humira, Remicade ... the list is growing). I’ve tried Enbrel, Raptiva and Humira and learned from all of them that I had to take double the typical dosage. Their costs exceeded $2,000 per month. My co-pay has been $45-$75 per month. If I lose the insurance coverage, I’ll likely lose the biologics, too. What would I do in this case? I can’t say now, but I know I’ve got options, thanks to KK and John Pagano and Dierdre Earls and a host of other FlakeHQ correspondents. When I stop to think about it, the ironies make me smile. If I lose my insurance I won’t be able to afford ribeye steaks. Ironically, that’s not because I’ll be spending the money on biologics, but because I’ll be depending, in part, on a better diet (no red meat!) in lieu of my biologic injections.
KK did not forgo doctors, she traded one for another (a western traditionalist for a naturopath/chiropractor). She did not forgo medicines, she traded traditional topicals for dietary supplements (hoping to address the causes rather than the symptoms). Most importantly, KK took charge of her disease. Her report (this email) is her testament to that fact. In my mind she has earned all that she currently enjoys. If there were a way to virtualize a standing ovation on a web site, I’d be leading one right now. -Ed