Hi guys. I've been searching near and far since my vitiligo is starting to spread more then ever. Guess I'm looking to put out the inevitable fire if you will. I've read up a lot on this doctor and clinic in Germany that is treating it's patients with PCAT (pseudocatalse) and UVB treatment. They even offer a trip to the Dead Sea once a year for a couple weeks of treatment under the rays there in Jordan. I want to know if any of you out there have any input about this trip or the doctor and what your results were. It sounds very promising. Thanks.
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Hey guys I just found this site and happen to be starting a PC-KUS / UVB treatment myself.
A little background I have had vitiligo for maybe 15+ years trying various treatments along the way. The one treatment that has made a dent in my vitiligo is NB UVB. I bought a home lamp some time ago and have been using it on and off for about a year and a half. I would say that my main patch of Vitiligo on my neck has repigmented about %40 but recently it has been VERY stubborn and this last bit of it just will not recolor.
This brings me to where I am now I have purchased a PC-KUS formula on ebay that is in powder form that you mix with water and lotion yourself because the substance itself is known to break down as soon as it is mixed that way I will have it at maximum potency.
As far as taking a trip to Germany or the dead sea that is out of the question for me financially. So to get the benefit of dead sea bathing I have purchased a 20 pound bag of Dead Sea bath salt and with be bathing in it regularly. I think that part of the successful repigmentation comes from the minerals that are absorbed in the skin through dead sea salt bathing.
On top of all that I am taking quite a few vitamins and supplements. The main ones being Green Tea extract, D3, Folic acid b-12 Fish Oil and NAC. I am also trying to watch my diet limiting consumption of meat dairy and sugars.
I'm really hoping that all of these things together will be the last push my body needs to recolor this stubborn bit of vitiligo.
So my treatment as of now is twice daily application of PC-KUS along with UVB activation of the cream and possible sun exposure. I will also be bathing a few times a week in Dead Sea Salts at home. I will continue taking my vitamins and supplements and watching my diet and hope to see results within a few weeks.
SORRY, for the long post not used to writing much about my vitiligo but it feels good to talk about it and to know that I'm not giving up on treating it and moving forward towards being more confident in myself.
Hey Baxter. Best of luck with your treatment. I hope it works out well for you.
Good report.
It seems you are on the right track.
More details at www.vitiligomap.com and www.vitiligomap.com/protocol.html and www.vitiligomap.com/tip.html.
I wish you success!
I owe everyone here an apology for not posting my results from the PC-KUS+UVB treatment sooner. The reason for the delay is that I wanted to give the treatment enough time, to be sure of what I was reporting.
I have been doing the treatment for nearly 5 months now. There are no noticeable side-effects and I've found the treatment to be easy to fit into my day since it takes only a few minutes.
Overall however, the treatment has been disappointing for me, so far. I have seen some small benefits in a small number of areas (mostly on my back, face and neck) but it's nothing amazing, and my vitiligo is still progressing in other areas despite the treatment. I think that the UVB is actually encouraging the vitiligo to progress as well.
I will continue the treatment for at least another 7 months to make sure I give it a proper chance. I will post more updates if anything changes.
:Edit: So 11 days after I posted this, I'm actually starting to see some better results. It's only very slight, but the spread does appear to have slowed or stopped and I've noticed a couple of spots of pigment on my neck where before there were none. Fingers crossed and I'll post another proper review of the treatment in a couple more months.
Excellent.
Don't forget to consider following a Functional Treatment, which is pretty much the combination of all actions you have heard from Friends. Suggestion at www.vitiligomap.com/protocol.html.
Hi Tom, Thanks for the updates.
UVB-NB (narrow band) does not stimulate vitiligo. Sometimes it shows the contrast of some vitiligo that was there already, but not noticeable.
You have to follow a complete Functional treatment to have better/faster results and also untrigger vitiligo.
Check www.vitiligomap.com and also it's sub-homepages. It might help you.
Hi Flavio,
For me, it's not a case of unnoticeable patches becoming noticeable. I am 100% certain that the patches did not exist 4 months ago. In my case, the vitiligo must be spreading in spite of the treatments then. Either way, it's disappointing for me.
Interesting you asked before about anti-oxidants. Prof. Schallreuter did not mention this at all. I am considering trying that in addition to the PC-KUS+UVB.
Professor's anti-oxidant contains:
- L-Methionine ( http://www.amazon.com/gp/product/B000H820Q2/ref=oh_aui_detailpage_o... )
- R-Lipoic Acid (http://www.amazon.com/Pure-Encapsulations-R-Lipoic-stabilized-vcaps... )
- L-Cysteine ( http://www.amazon.com/NutraBio-N-Acetyl-Cysteine-NAC-600-Vegetable/... )
- Ascorbic Acid or Vitamin C (I don't recommend it)
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Thanks Flavio for the information.
Interesting that Prof. S. didn't mention these things to me at all. Maybe she considered them unecessary for me for some reason.
I should have mentioned that she thought I had mixed vitiligo, rather than NSV on it's own. So I'm pretty unique, within a pretty unique group. Typical, as my wife would probably say! :)
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