Nom de Plume

It’s nearly 3 in the morning and the only reason I’m awake is so I can get all my work done and Steve and I can go on our what-is-becoming a routine-late-August vacation tomorrow. Which essentially means that I needed a little procrastination before I get cranking again. Which led to a “short perusal” of google analytics. Which, of course, led to a whole half hour wasted. Which in its turn led to this blog post. So let me begin and stop nattering away.

I am shocked–SHOCKED–at how many hits I’m getting on various google combos of vitiligo with vitamin d, tyrosine, vitamin c, deficiency and so on. Not, you understand, that I don’t want you here or begrudge any information–quite the opposite, in fact. Welcome, grab a chair. Oh you probably already have one. I forgot; it’s appallingly late at night, or early in the morning depending on how you look at it.

No, what shocks me is that there’s very little readily accessible vitiligo information that deals with various vitamin, mineral, amino acid, yaddah yaddah deficiencies (except for the b vitamins and copper). And when anyone connects the dots and says, “Wait! Vitamin D is implicated in autoimmunity! Vitiligo is an autoimmune disease!” what they end up getting is my site. If you google vitiligo and vitamin D deficiency, I’m ninth.

That’s scary.

And it’s frustrating becuase unless you’re an obsessive researcher, you’ll probably believe what your dermatologist tells you–that protopic, corticosteroids, and so one are the only method of treatment.

So for the record, here are some guidelines for what I’ve learned about vitiligo sources (and some other general information) from my obsessive researching:

1. Pubmed is your friend. Except when you don’t understand it, which, alas, is much of the time. You can read all sorts of scientific abstracts, and if you’re in any doubt that vitamin D deficiency may cause vitiligo, please research autoimmunity and vitamin D at www.pubmed.com. There’s a mother lode. Incidentally, if you chance upon the vitamin D council web site and decide to e-mail all its research scientists whether they know of any published research between vitiligo and vitamin D, or whether they can hypothesize, I will save you the trouble. All, save one, will send you nice, short e-mails talking about a vitamin D analogue topical cream. Totally different. It was very nice of them, and they took the time out of their day. The remaining one will write you a very, very thoughtful e-mail saying that he has a grad student with vitiligo and has wondered the same thing. BTW, I was (am?) deficient in vitamin D and am taking a whopping 5,000 IU a day.

2. Vitiligosupport.com is also your friend. Although there are a lot of people who genuinely believe that rubbing unadulterated bergamot oil and then going out in the sun is a good idea, there is a lot of great info and very, very supportive people. Also, great success stories for those days when you just feel like curling up in a ball and crying. Registration is free, but the $25 bucks to be a supporting member is well worth it, just to be able to see the photo albums of people repigmenting.

3. Tyrosine is phenylalanine. A lot of naturopathic, complementary, and alternative vitiligo treatments include l-phenylalaninewith quite a bit of success. This stuff converts to l-tyrosine in your body (as well as other stuff). When tyrosine oxidizes, it reacts with copper to create melanin, i.e., pigment. Please excuse the simplistic, and probably not completely accurate, description; my point is merely that phenylalanine is often used, but it’s essentially the same thing as tyrosine. My naturopath is in love with tyrosine for whatever reason (he uses it himself), so that’s what I’m talking. I think either would work. If there’s anyone out there who can correct me, please do. I have wondered why more places just don’t go directly to the tyrosine.

4. Sunlight or nUVB. Your dermatologist will probably tell you to stay out of the sun, especially if you’re using protopic. As far as I’ve been able to tell, no treatment works without it. In fact, some studies show that b12 and folic acid with sunlight or nUVB alone work–without any of the other stuff. Getting tan sucks because it makes your spots show up more (and you see more of them), but my face has almost completely repigmented in the month that I’ve allowed myself to get sun. And we’re not talking a lot–lying out in the sun for 15-20 minutes 3-4 times a week.

5. Snake oils may work–but don’t waste your money. There are lots of “guaranteed cures” out there. Alas, with vitiligo, nothing is guaranteed, except the fact that, as one googler put it, “vitiligo sucks.” Well put. Now, I think some of these probably DO work, because as far as I can tell, they all work on the same principal: Photosensitization. Remember that whole sunlight thing? A lot of people find that if they get the spots pink, pigment starts coming back. A lot find that if they get the spots burned, it comes back even faster. Bergamot essential oil, psoralea, khalla, and a whole bunch of other stuff makes you more sensitive to sun, ergo you pink faster, ergo you repigment. Personally, I haven’t reached this frustration level yet, but who knows? I may just yet. But the point is, you can make something that will fry you to a crisp much more easily and cheaply than sending off to India for it. Plus, your packaging will probably be nicer.

6. Vitamin C confuses me. Dr. Montes (who wrote a book on a nutritional approach to vitiligo) has his patients on massive amounts of vitamin C. Over on vitiligosupport.com, I’ve discovered that many people find their spots spread with vitiligo. As for me, the jury’s still out, so I’m confused on this one.

7. Expect to educate your doctor–and never settle. I was dissatisfied with my dermatologist, which I’m discovering is far from unusual, and went to a naturopath to get complete tests. Best move ever. I love the naturopath and his resident. At this point, though, I know more about vitiligo than they do; they, quite happily concur. In fact, as they say, “You are your own best doctor.” It’s true.

8. You can always depigment. This has been strangely comforting to me, but if you get really really bad, you can always depigment. I’ve seen pictures of people who have done it, and they look pale, but not oddly so.