Vitiligo update

The big news is that I am INCREDIBLY disgusted with doctors right now. At least, I’m disgusted with my dermatologist–very pleased with my naturopath.

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.

Comments (9)

  1. kevin wrote::

    could you tell me the exact amounts of your vitiligo regimen such as the copper, zinc, c, tyrosine, b12 and folic acid?

    Sunday, July 22, 2007 at 7:52 am #
  2. Zia wrote::

    hi Kevin,

    Per the naturopath, these are my exact pills:
    –1000-1800 mg l-tyrosine
    –”2 to 3″ pills a day of a folic acid (800 mg) and vitamin b12 (1000 mg)
    –1 cap of 1 mg copper with 15 mg zinc (the copper needs to be bound)
    –1 pill with 500 mg of vitamin c and 500 mg bioflavenoids.

    I should note, however, that I also got a book called Vitiligo, Nutritional Therapy, which is pretty interesting (although rather expensive), and this guy has had really good success with a b12, folic and c combo. He recommends at least 500 mg of folic a day, so I’ve actually increased my consumption of that in the past week or so.

    AND, I’ve been reading on vitiligosupport.com that for some people, vitamin C causes the vitiligo to SPREAD. It seems mine is, though whether that’s because it’s activeo r because of the vitamin c is unknown. So I’ve been taking other things for my antioxidants instead just to test the theory. I’ve been taking milk thistle, and gingko, and drinking a lot of green tea.

    Interestingly, I’ve also been using a face lotion with q10 in it–not because of the vit but because I’m a sucker for all those get rid of wrinkles potions–and have since found out that many docs also recommend 50mg of q10 a day.

    Have you been dealing with this for a long time? It’s so nice to see you here!

    Monday, July 23, 2007 at 7:51 am #
  3. sunil wrote::

    i am taking recolouer supplement

    they claim improvement but it seems very slow

    hi pls tell me more about homeopuctue

    Thursday, October 4, 2007 at 9:19 pm #
  4. Ellie wrote::

    Aloha from Hawaii

    You have my sympathy — I’ve had it for ages too. Seems to stay fairly slow spreading. Dermablend helps a lot and those indoor tan milks work too to cover. I also just read recently abt the folic acid – so am taking 5 pills of 800mgs each a day (the dose was said to be that – very high – ) and the B12, so lets see what happens. Good luck!

    Saturday, March 15, 2008 at 12:16 pm #
  5. Rubbi wrote::

    “Because many people with vitiligo also have stomach malfunction, they do not absorb vitamin B12 and folic acid very well. This may be part of the reason why these nutrients, along with vitamin C, are often successfully used as part of a vitiligo repigmentation program. Suggested doses are 5mg folic acid and 1000mg vitamin C, twice daily. For the best chance of success, the vitamin B12 should be given by injection, 1000mcg weekly. Several months are usually required before early repigmentation is seen.”
    “Another early report describes the use of PABA, or para-aminobenzoic acid—a factor that is commonly associated with the vitamins of the B-complex family. Persistent use of 100 mg of PABA three or four times per day along with an injectable form of PABA and a variety of hormones tailored to the individual patients, resulted in repigmentation of areas affected by vitiligo in many cases.”

    Sunday, June 1, 2008 at 10:47 pm #
  6. Kara wrote::

    Have you experienced repigmentation yet? How long did it take for repigmentation to normalize using your vitamin regimen?

    Tuesday, March 17, 2009 at 4:45 pm #
  7. Zia wrote::

    I answer all this in subsequent posts. Check out the vitiligo link at the top of the page.

    Tuesday, March 17, 2009 at 5:06 pm #
  8. Riz wrote::

    Is 10mg (1,000 mcg) of Vit B12 the correct dosage for my vitiligo? I am currently taking 5mg (5000 mcg) and I can already see patches 2 days after taking the tabs.

    Monday, May 4, 2009 at 6:32 am #
  9. Zia wrote::

    At risk of sounding snarky, why would you ask me for medical advice? I don’t know what the correct dosage of b12 for your vitiligo is. I can tell you–and have done so above–what I have taken, but I don’t know you, your body, your vitiligo, or really anything at all about medicine.

    Monday, May 4, 2009 at 8:18 am #

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