Well. It behooves me to give an update, doesn’t it?

Honestly, I just live with it. I’m fortunate–and superstitious enough that I’m knocking on wood. I have a few more tiny spots, but you don’t really see them. It seems that every summer, as I start getting tanner, I start freaking out because my vitiligo is noticeable (if you look) above my eyebrows and on my nose. After a month or so, it evens out. I have a new little spot on my chin, but you can only see it in direct sunlight. I have a spot on my lip, but I don’t care anymore. And the areas that are getting worse are places that I can’t see, and no one else can either. So I don’t care.

And that’s what it all comes down to. All that freaking out, and I don’t think about it very much. In fact, I so actively don’t think about it that I forget to take all my vitamins. And then I try to be good, and am consistent for a few weeks–because they do WORK for me–and then it falls by the wayside again.

But I do have a few observations. First, I believe that four genes are now implicated in vitiligo. I had thought that the vit probably came from my Indian father. Last summer, however, my mother came to visit, and I saw a white patch on her leg. I think she has it, but is so fair that it doesn’t even show up. Add this to the fact that her mother was grey by the time she was my age, and her aunt was completely grey at 18–and well, it makes sense. (People with vitiligo grey prematurely. Sadly. Thank heaven for hair color.)

Second, beware of tyrosine dosages, if you’re taking it. I was having panic attacks earlier this year, and chalked it up to stress, then the pregnancy that turned out to be ectopic. At the time, I was being good about supplements, which included a fairly high dose of tyrosine. I added the tyrosine back in two days ago, and have noticed being nervous again.

As I mentioned, my face was vitty again at the start of the summer. Honestly, I think repigmenting my face is as simple as b12 and folic, combined with sunlight. Again, knock on wood. There have been some studies to show that this combo works. No protopic. No dovenax (not that I ever tried that on my face). Just the supplements and sunlight.

So that’s about it. Please, feel free to comment, and if you’ve posted before, I’d love to hear how things are going.

BTW, has anyone else noticed that ever since Michael Jackson died you don’t have to explain to people what vitiligo is?

For a couple of months, it’s seemed like the area over my eyebrows is a little lighter again, and I have studiously been avoiding it–but dreading getting tan in the summer all the same. Now it looks like it may be getting worse, and to make matters even more distressing, there’s some hyperpigmentation above the lighter areas. It doesn’t look all that bad to anyone but me. With my hyphochondriac tendencies, however, I am stressed over it.

It’s also interesting because I’ve been very stressed and overworked for the past couple of months, and it seems like some of the spots (under my left arm, one spot in an unmentionable space) that were closing in have expanded again. Again, it’s not that big a deal, but I do wonder about the role of stress. I also have not been consistent with taking my supplements every day; I probably average about 3 or 4 times a week. So I need to be better about that.

I hate this thing. I keep telling myself that what I have is minor–and it’s true–but I still feel as though my body has betrayed me. I have always been a little bit of a hypochondriac, but I find that I’m really stressing out over pretty much anything that seems out of the ordinary. I wonder how much of the vit anxiety I’ve transferred to other things, and I need to redirect all this energy that I spend on fretting to something more productive. I just don’t know how.

No, what apparently interests you is “vitiligo porn.”

So the progress:
1) My face has completely repigmented. There are a couple little section that are still paler, but it looks like normal, uneneven skin tone rather than anything else. I’m still using Protopic on my face, though I’m down to once a day, rather than twice.

2) My wrists and inner forearms seem to be getting better, though this could be because I’m losing my tan. I noticed a few weeks ago that the fleshy pad at the base of the hand (what is that thing called, anyway) is losing its color right at that section where you go from the palm color to your regular color. Sorry, that was very awkwardly stated, but I don’t know how else to describe it. It’s worse on my left hand than on my right, but the right is starting to go a little too.

3) I’m getting a little bit more on my fingers, right around the nail. On my hands, this started around my thumbs, and now is on my fore and middle fingers as well. It’s not major; you can barely see it, so it doesn’t really bother me that much. I have a couple of small spots on the back of my hands too–and every time I see another one, I freak–but at this stage, they’re the size of a pin head. I have the same thing around some toes. It’s not super noticeable unless you look. I haven’t been using Protopic either on my fingers or toes.

4) My shins aren’t getting any better. I think they’re getting worse. Not quickly, but they are.

5) My underarms, well, I think there’s something going on there. It’s always been worse on my left side; my right side was trying to play catch up for a while, but it’s almost completely gone on the right. On the left, the spots are still there, but it seems to me that they’re not quite as white.

6) Ahem, there. Now this is really interesting, because while the spots are definitely there, they are smaller. A couple of months ago, it seemed to be spreading like wildfire, with large swaths obviously in the process of depigmenting. Now, there are two or three spots. They are smaller than they were before, and the depigmenting spots have stopped depigmenting. So what’s the interesting part, you ask? Simply this: I have not done a darn thing for those spots: No Protopic ever.

7) There are also a couple of other areas that I haven’t been Protopic-ing: One small round area on my shoulder; a dime-sized area smack in the middle of my chest, another dime-sized bit high up on my ribs; and a little section at the base of the spine. Interestingly, the rib one is getting progressively smaller. Actually, I just looked, and it’s now the size of a pencil eraser.

Ultimately, I think Protopic is really working–it started working on my face almost immediately once I started getting some sun. But obviously there’s some other stuff going on too. I think the supplements are helping–a lot. And I wonder about some other stuff, which are all listed below. I know that my posting some of these things will probably make you doubt my credibility. Not that I should be relied on as being credible in any case, because I’m just one person and so this is all anecdotal. But for a lot of this, I figure, what’s the harm in trying it. So here they are, in no order of importance:

1) I’ve abandoned commercial deodorant in favor of either this or of my own mixture of cornstarch, baking soda, and arrowroot powder (with some rose absolute thrown in to make it smell good). Both work surprisingly well.

2) I’ve replaced lotion with a straight coconut oil and CoEnzyme q10 mix. If you google coconut oil, you’ll get all sorts of stuff about how great it is for you. I take a lot of this with a grain of salt, but I will say that my skin looks better than it has for years. The q10 is for the oxidative stress theory, and I think that’s working too.

3) Regular kefir drinking. Kefir is supposed to be incredibly wonderful for you; among other things it is claimed to be an immunomodulator. Who knows if all this is true, but it’s like drinking yogurt, and can’t hurt.

4) I’m really trying to eliminate processed foods as much as possible. We’ve never been big fast food eaters, but we often rely on Trader Joe’s frozen stuff. I’m trying to cook more, using whole ingredients, limiting white flour, etc. I’m also going the organic, no hormone food route.

5) I’m also cooking with coconut oil these days instead of olive. This is kind of an experiment here. As I said before, it you google coconut oil, you’ll get all these pages about why it’s good for you, how people never had heart disease when they used it, and blah blah blah. There are even people who take coconut oil by the tablespoon plain, which is, in my book anyway, just another reason to take it all with a grain of salt. However, there were a few things I found really interesting. First, unsaturated oils oxidize at high cooking temperatures, creating free radicals, which then contribute to oxidative stress. Second, coconut oil is high in Omega 6 fatty acids, which my naturopath has me on fish oil for anyway. And third, coconut oil appears to have antimicrobial effects, and is claimed to have antiviral effects too (though I was unable to find objective research–i.e., not on a coconut oil site–to back it up). Including cytomegalovirus. Stay with me here. A while ago, I found (and promtly forgot to bookmark) a very obscure research paper that said that all subjects were treated for cytomegalovirus and had their vitiligo disappear. There MAY be a causative link between cytomegalovirus (search cytomegalovirus and vitiligo at pubmed.com). So I figure it can’t hurt.

6) I’ve discovered how much I like juice fasting. But I really wish that there were some true studies about whether it’s a healthy thing to do. If you search juice fasting online, you get all sorts of weirdos, fanatics, pseudo doctors, and people who just plain want to believe that it does something and thus get a placebo effect. If you believe all you read, juice fasting will cure everything and solve that nagging question of world peace to boot. I don’t know. But at the risk of devolving into the worst of alternative quackery, I have to add this. I like the way juice fasting makes me feel.

It hasn’t done a darn thing for the vitiligo as far as I can tell, and I don’t know whether the “detoxifying” stuff is valid, whether the “retracing” thing is for real, or the “healing crisis” bit is true or any of the rest of it. However, I can tell you how I feel about it and you can make up your own mind. I do feel “detoxified” after I’ve done it. Of course, one goes for days without eating solid food, so that can be part of it. The first time I did it (6 days), I felt like crap for three days, slept 15 hours a day, and emerged feeling really great. The second time (3 days) and third time (5 days), I slept normally and felt fine. In all cases, I ended the fast when I got to the point where I felt like I needed to eat real food again, and felt energized at the end. This is, I know, purely subjective and can be contributed to eating again as well as to a host of other things. But I confess: I like it.

This last fast, I was very, very itchy, got a whole bunch of rashes, hivey looking things, and pimples that all appeared and disappeared within the space of less than six hours. I can’t explain this because the rashy stuff wasn’t going on before. I should, however, add that ever since I started using Protopic, I’ve been itchy all over–and not just in the places that I apply the medication. Of course, being me, I worry that I have chronic urticaria now, psoriasis, AND eczema concurrently, and also that by this time next year, I will be completely vitiligoed (apparently, vitiligo can make some people itch). But I think it’s the Protopic because I didn’t use it at all for the week we were in Oregon and I stopped itching altogether. (If there is anyone else who has experienced this, I would love to hear from you.)

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.

The bad news is that I’m still in the active progression stage. It’s getting worse on my shins and underarms. I also have spots on my inner forearms that first started appearing a little over a month ago and are pretty much growing every day. And of course, it’s hard to tell what’s new and growing, and what is just more obvious because I’m getting tanner. It’s a bit of both–but the sad fact is that it is spreading. Strangely, it seems to get worse faster on the areas I’m applying Protopic. I don’t know whether it’s coincidental or not. On www.vitiligosupport.com–a great, great site–many people say that the think it gets worse with Protopic before it gets better. So, as of three days ago, I’m conducting an experiment. I have a tube of Dovonax–a topical vitamin D analogue that works in conjunction with sun exposure–that I’m using on my shins and underarms. We’ll see.

I’m also in the process of getting a home narrowband UVB thing, so I can continue with the phototherapy over the winter. Dealing with insurance is a nightmare, and I will spare you the horrors, particularly as it seems that my last many posts have been incredibly negative. Well, I’ve been feeling pretty negative, so there you have it. But I just keep reminding myself that my face IS repigmenting and that’s a really, really good thing.

By the way, I also ordered a book called Vitiligo, Current Knowledge and Nutritional Therapy, written by an Argentinian doctor who has seen incredible results using a combination of b12, folic acid, and vitamin c. I’ve upped my dose of folic acid to his recommended levels–5 mg a day (his minimum). His treatment takes a really long time, but it is used without sun exposure. That german clinic I mentioned before uses a similar approach.

My derm told me that you get enough D just walking to your car every day—and the naturopath said that just indicated that she’s not up on the latest research. He was very mild about it, but did say that the problem is that vitamin D is cheap and you can’t patent it—so it doesn’t receive that much attention. BUT the number of prescription medications that are essentially various forms of vitamin D is astoundingly high.

The other thing that is irritating me about my derm is that she never told me that protopic doesn’t work unless you get sun exposure. In fact, NONE of the treatments works without UVB rays. So I’ve been doing moderate sun exposure (10 minutes without sunscreen).

Also, I think there’s this attitude in the medical community that there is a single cause for something—when in fact there are many different factors that tip one over into having a disease. In my own case, he suspects—and I concur—that the following issues are coming into play: vitamin D deficiency, low cholesterol (apparently, it all goes straight to my fat stores!!), low levels of zinc (which weren’t tested), relatively low B vitamins, possibly achlorydia (the inability of your system to process differing substances, in my case protein), and possibly oxidative stress. To that I add a possible genetic predisposition; despite all statistics saying that all races are equally affected, it seems that Indians (I’m half) seem to have vitiligo more often. SO, he put me on:

–massive quantities of vitamin d (5000 IU a day)
–l-tyrosine (an amino acid that helps create melanin)
–zinc and copper (copper works with l-tyrosine)
–b12 and folic acid
–vitamin c with flavenoids (this is for the oxidative stress theory/angle)

This German clinic has the same supplemental approach, and they’ve posted before and after pics, which are amazing. I keep coming back to this when I feel a little hopeless:

http://www.vitiligo-vitiligo.de/10701/22913.html

Right now I’m trying to balance being hopeful with not having too high expectations. And don’t get me wrong—I’m grateful for the standard medical community, but it just seems to leave so much out.

It’s weird, I know, but really, I don’t enjoy being out in the sun. Living in the Pacific Northwest is perfect for me, with oodles of rain and lots of cloudy days. Steve, who loves the sun, thinks this is weird–and he has been contending that all my skin woes are because I’m deficient in vitamin D.

Turns out, he’s right.

The naturopath called to tell me my test results were back. Most things looked pretty good, but there are a few things, she said, that needed to be tweaked. We all know I’m a worrywart, so I asked what they are. So first off, I’m deficient in vitamin D. My protein was a little low, and my cholesterol, she said, was too low. (I never knew cholesterol could be too low.) Also, my DHEA levels were high, and she said she was going to look at my testosterone levels and cortisol levels. She said that there was probably some hormonal stuff going on. I don’t really understand that whole DHEA thing (apparently, many vitiligo sufferers have low DHEA), but the followup appointment is week after next where we’ll go through it all.

What is really interesting though is the vitamin D stuff. I couldn’t find anything from a google search on vitamin D deficiency and vitiligo–but when I changed the search to vitamin D deficiency and autoimmune, a bunch of research started coming up. To begin with:

Immunity

Vitamin D in the form of 1,25(OH)2D is a potent immune system modulator. The VDR is expressed by most cells of the immune system, including T cells and antigen-presenting cells, such as dendritic cells and macrophages (6). Macrophages also produce the 25(OH)D3-1-hydroxylase enzyme that converts 25(OH)D to 1,25(OH)2D (7). There is considerable scientific evidence that 1,25(OH)2D has a variety of effects on immune system function that may enhance innate immunity and inhibit the development of autoimmunity (8).

Then, I found this study, which is fascinating: Vitamin D: its role and uses in immunology

And then I found this site, which lists recent vitamin D and autoimmune research.

There’s a lot more too–and while I haven’t been able to find any studies directly linking vitiligo to vitamin D, the fact that it’s classified as an autoimmune disease suggests that there may be a correlation, just that it hasn’t been explored fully. Most studies focus on the debilitating autoimmune diseases.

So that’s where we are today; I’m feeling pretty hopeful.

Vitiligo affects 1-2% of the population, and it affects all races equally. It’s just more noticeable in darker skinned people. I’m fortunate that I am not super dark. Even so, if it affects 1 or 2 people out of a hundred, why is it that I don’t encounter it more often? I remember seeing some people in India years ago with it, and I had an African-American professor in college who had some patches on his hands. But that’s pretty much it. People are coming out of the woodwork though; whenever it’s mentioned, people mention someone they know who has it. My neighbor Nicki came home from her weekend in Portland and told me, “My friend has what you have!” Her friend told me to contact her if I need support, and that’s been wonderful. I should probably go to a support group, but I don’t know if I’m up for that yet.

There are spokespeople for everything. Breast cancer. Prostate cancer. Incontinence. Impotence. Why are there no spokespeople for this thing? The closest we’ve come is Michael Jackson, and let’s be frank: He’s not a good representative of normal people who live with vitiligo. He’s not really a good spokesperson for anything. It’s sad that he’s done so much to himself that people question whether he really has vitiligo and chose to depigment himself because it was so severe or just wanted to be white.

This is not a pitiful post, begging for sympathy. Even though I know that this is something I’m going to have to live with, I’m not going down fighting. To be honest, I really like my dermatologist, but felt she was abrupt. She did have me tested for thyroid stuff because about 20% of vitiligo sufferers also have autoimmune thyroid conditions. The test was fine–but I’ve also read that vitiligo sufferers can be low in B vitamins and copper. Vitiligo can be a sign of pernicious anemia, which can prevent absorption of vitamins and minerals. There was a very small study that showed that gingko biloba can help slow the progression. Anyway, the medical approach seems to be to treat the symptoms, so I went to a naturopath last Wednesday. On Thursday, I went to give blood and urine samples, and they’re testing everything. I should be able to go back in a few days to see what the results are. I know it is really perverse to hope for odd levels of vitamins or whatever, but I do.

A couple of months ago, I was shaving my, uh, nether regions, and noticed there were some white patches of skin. I thought it was really weird, but I was super busy work-wise, and I meant to look it up, but didn’t. Then, two weeks ago, I was running out to a client meeting. While I was brushing my teeth, I couldn’t remember if I had put on deodorant, so I raised my arms to check in the mirror. “Wow,” I thought. “I put on way too much!” Rubbed the white patches and they didn’t come off.

I got in a car and called Steve in total freak out mode. He interrupted me when I started telling him about the nether region patches. “Oh you’ve had those forever. You have some under your arms too.”

“Were you planning on telling me this?” I asked. “How long have they been there?”

“I just figured it was another one of your skin weirdnesses and didn’t want to get you all paranoid.” Much as it pains me to admit, he’s right on both accounts: 1) I have weird skin stuff; and 2) I am a complete hypochondriac. So when I got home, I made an appointment with the dermatologist. For the record, on the question of how long they’ve been there, he wavers between “since we’ve been together” and six months. Typical guy.

But then I noticed a patch on my face.

It wasn’t white–but it was definitely paler. Is it my imagination? Is it really there? Is it exactly like the other patches, or could it be something else? What about that red circle around it? And those bumps? So I started in on the Internet research.

I’m good at research. I love research. And I’m also on the computer all day long. At home. Alone. Where I have ample opportunity to imagine the worst. Before long, I was convinced I had both vitiligo and lichen scleroma, but was hoping that it was systemic tinea versicolor–not that the systemic part exists, but one can still hope, right? And my doctor’s appointment was still two weeks off. Then, I met Steve up in Victoria and we spent the day walking around in the sun. The next day, in a client meeting, I excused myself to go to the bathroom and while washing my hands started fixating on the light patch on my cheek.

And then I noticed that the areas above my eyebrows were sunburned.

“Of course, they’re redder,” scoffed Steve in an attempt to comfort me. “They stick out more.” The countdown to my doctor’s appointment began in earnest.

Still hoping that it was tinea versicolor, I started applying an antifungal lotion on my face. They just kept appearing. I hoped against hope that it was the versicolor thing, but I knew different. It was vitiligo.

I was bordering on hysterical. In the course of the next week, I went through all the stages of grieving–including acceptance once I realized that pretty much anything can be covered by makeup. And there’s specific makeup for this. The fact is, I spend less time on makeup than any other American woman alive, so who cares if I need 10 extra minutes every morning.

Meanwhile, I missed my hair appointment and my grays kept on growing in grayer. (I’ve been going gray since I was 25; my grandmother was completely gray when she was 35.) I was examining my head in the mirror, and noticed a patch of white. And then it seemed to me that my hair was thinning. Like seriously thinning. Alopecia (I had a bout of alopecia areata my early 20s) and vitiligo can go hand in hand. Never mind that Steve insists it’s been like that forever. Now there’s more Internet research. And there’s more hysteria.

So in other words, the last two and a half weeks have been absolutely terrible. I haven’t been able to concentrate on anything. I had my appointment this morning. “I didn’t shave my armpits,” I explained, “so you could see that some of the hair is growing in white.” I didn’t even have my shirt off when her ears perked up at the mention of white and she said the dreaded word: “Vitiligo.”

I knew it.

But all is not lost. It’s all over my face–but it’s also early in the game (which means it’s just paler–you can only really see it up close). There are treatments. So we’re starting with Protopic, and she seems to think that repigmentation is more than likely. There are other, more aggressive treatments if the Protopic doesn’t work. And there’s always makeup. After the past couple of weeks, just knowing for sure makes a huge difference.

And there’s nothing wrong with my hair, except for the fact that I’m 33, not 23.