Improving With Nutritional Supplements
Dear Ed: What a great website. I have psoriatic arthritis (for 6 years) and do not want to take Methotrexate because the doctor said it ruins fertility and I'm a newlywed with a little baby. Even though I have been in bed for months and am finally starting to walk (my PA was in remission during pregnancy and came back 10-fold after birth) I don't want to take MTX. A friend of mine, whose own PA was, according to doctors "the worst case they'd seen," went completely into remission with dietary changes and months of nutritional supplements (high quality) supervised by a doctor. He discovered he had parasites. I have also heard and read psoriasis is really an intestinal disorder. Since the use of these high quality supplements, I've been getting better.
I love your website: what a camaraderie for all of us with this horrible disease. It's great to laugh about it for a change. -Susan J.
Ed's Response: I'm glad you enjoy FlakeHQ, Susan, and I'm also glad you bring up the subject of diet and P (or, in your case, PA). I am grateful to be reminded of this periodically. For anyone who cares to collect them, there are reams of testimonials from people like yourself who have found major or minor, apparently permanent but at least prolonged relief from their P through diet and/or nutritional supplementation of some kind. (Two links on this subject, from the Archives, are at the bottom of this page.)
Since last I wrote about it, I've watched the videotapes from the October 98 National Psoriasis Foundation Annual Conference (the videotapes are for sale; visit NPF on the web for more info). One of the recorded panels dealt with "alternative medicine," a category under which dietary therapy for P falls. It pleased me to see NPF does not denigrate these approaches, they merely refrain from endorsing them. That set of therapies based on links between P and digestive parasites (and yeasts) was mentioned. "Acceptable studies" either haven't been done or haven't been "statistically conclusive." This is an obtuse way of confessing ignorance. You may ask (I do) what constitutes an acceptable study and why, in the absence of them, is the medical community mostly tight-lipped about alternative therapies? Acceptable studies appear to be limited to empirical experimentation of the kind we learned about in General Science classes. These involve control groups, blind and double-blind procedures (i.e., processes in which the operating agents do not know precisely what they are doinglike administering a substance with a code name that could either be a medicine or a placebo). Acceptable studies are also replicable, meaning if one batch of researchers gets these results, another entirely different batch of researchers should get them, too, by following the same procedures. The outcomes of acceptable studies should logically be pretty dependable ... dare I say it? ... pretty true. You and I both know lots of truths exist that haven't been proven through empirical experimentation. Some alternative therapies may fall into this category: true but unproven. Why, then, aren't more docs willing to discuss them or recommend them? Some docs will tell you the downside to not having positive results from acceptable studies is not just ignorance about whether something works, it is also ignorance about side effects. This is, I imagine, especially true about radical dietary therapies. I say "especially true" because, when you monkey with the digestive system, you are potentially monkeying with every system, since every system inside you must be nourished. Liabilities start to multiply fast.
So why haven't more radical dietary therapies been empirically studied? Hah! One lady derm on an NPF panel was brutally honest: She said (I'm paraphrasing), If the result isn't something to be manufactured and sold for a profit (medicine or health products) the primary sources of empirical research dollars (pharmaceutical and other for-profit entities) aren't going to invest in the research. Why should a pharm spend money proving that your condition might improve if you lay off tomatoes for a decade? ... What about government-sponsored research? Shouldn't it not be so bottom-line oriented? Well, it shouldn't be, and it might not be, but there are only so many government grants to spread around.... And there is another problem specifically about dietary research: It can take a devilishly long time. Maybe decades. In some cases we are talking about adjusting quantities of elements or compounds that are pervasive in our bodies' tissues and linger until those tissues are replaced by cell attrition. (ASIDE: I'm being influenced here by an interesting book titled Reverse Aging, by Sang Whang, available via Amazon.com for about $14 including shipping.)
There are more arguments targeting or surrounding dietary therapies for P. Periodically someone will report convincingly that some dietary supplements aren't what they claim to be, or are more or less than they claim to be, and not much is to be done about it since FDA oversight of non-prescription, non-medicinal (i.e. natural) products is scant....
None of which alters the fact that peoplelike your friend who went from "worst case seen" of PA into complete remissionare getting relief from their P or PA through non-traditional dietary therapies. So, what's a flaker to do?
Try it. Try them. Don't be afraid. Unless your P is debilitatingkeeping you off work, in bed, in constant painyou are able to experiment. Forget double-blind, replicable, statistically significant research. Pshaw! What have we to lose by trying some of these things? A few more flakes? A bit more itching? ... Or possibly far fewer flakes and far less itching? We are cautionedand I will caution younot to do something potentially dangerous without conferring with your doctor. But ask those doctors the right question.
Correct: "Will doing THIS (or taking
THIS) put me at any risk?"
In responding to the correct question, narrow-minded docs may snort and say, "Yes, you're risking letting your P get worse." But you and I know that's a risk and that it is not going to kill you. On the other hand, you will never get an encouraging answer to the wrong question ... unless, perhaps, you ask the "doctor" who is hocking the alternative therapy.
So ... Good luck, Susan. I hope things go terrific for you! Please, puhleeeease, keep us apprized. Okay? -Ed