Treatment update, Ted Grossbart, Facebook debates, Dead Sea and the Blog

Sorry, again….

I’ve had a number of comments asking for updates and I know it’s been a long time since the last post relating to my treatment. My work has been very hectic and I’m in the process of changing jobs. The timing has all come together pretty well, I finish my old job on the day I fly out to Jordan for the Dead Sea Treatment with Dr Schallreuter, I then return and start my new job in London 🙂

So, when I returned from Germany and from my consultation with Dr Schallreuter, I ordered a Dermalight 80 UVB lamp and started a half arsed photo-therapy treatment. I say half arsed because I didn’t order any of the PC-KUS Pseudocatalase cream, I only used the lamp. In truth, this was probably due to my cynicism towards the effectiveness of the cream but now I think about it, after spending £1000 to go to Germany and a I’ll be spending a further £3000 on the treatment at Dead Sea it’s seems counter productive not spend an extra 90 Euro per bottle and use it to follow  Dr Schallreuter’s treatment plan properly. I’ve ordered two bottles to take with me to the Dead Sea.

My lamp treatment had mixed results. I followed a treatment plan of 33 seconds a day for 30 days and then increased to twice a day thereafter and I only used the lamp on my face. My eye saw 75% repgimentation but then stopped, the parts of my eye that had repigmented continued to get darker whilst the remaining part of my eye that had Vitiligo remained the same. This got to a stage where I didn’t want to continue as it looked like I had a black eye and decided to wait until the Dead Sea and give it my full attention and dedication.

My eye remained the same for about 2 months, the tanned repgimented parts slowly faded back to normal skin colour. I then went Paleo and started taking Ginkgo Biloba and St Johns’ Wort and saw more repigmentation occurring! Unfortunately, recently I got hit with a very stressful time, Paleo diet suffered, I stopped taking any supplements and I lost some of the pigment that I regained with the lamp.  This didn’t affect me too much, my focus now is to get on track at Jordan, follow a strict treatment plan whilst taking supplements(including Ginkgo Biloba and St John’s Wort) and working on my diet and watching what I eat.

On the topic of Stress…. It’s obvious that I deal with it very, very, badly. My work consumes my life and personal issues often overwhelm me. I decided I wanted to tackle this issue head-on  and speak to someone who can give me real life tools to get my mind into a manageable state when I’m faced with emotional stress. I’d heard Ted Grossbart’s name mentioned a few times in the Vitiligo community, he is a Harvard Medical School trained Psychologist. He deals specifically with  people who have medical issues that have created emotional stress or emotional stress that has triggered medical problems that usually manifest themselves via the skin.

It looks like his usual clients suffer from things like severe acne or eczema but I believe he sits as an advisor to the National Vitiligo Foundation and he has previously treated people with Vitiligo. My personal experience is that stress made my Vitiligo much worse, so this seemed like a sensible step to take in treating one of the contributing factors. Ted has a book out that I’m half way though reading called Skin Deep: A Mind/Body Program for Healthy Skin (or you can get the free eBook here) where he teaches self hypnosis techniques to address the root cause of problems relating in skin complaints. He is based out of Boston, US, so I’d planned to have 7 initial sessions over Skype. It’s not cheap at $210 for 45mins but for me I believed it would be worth it.

Unfortunately,  I received an e-mail from Ted saying he could no longer make the sessions due to personal complications but hoped we may reconvene in the future. I was very disappointed but I’m going to see if I can find someone locally in London in the coming months following the Dead Sea Trip.

I joined a Facebook group for Vitiligo with over 3000 members and it opened my eyes how much misinformation exists on the internet. It must be extremely daunting for anyone newly diagnosed with Vitiligo to try and cypher the facts from the crap and biased opinions that are out there.  A number of discussions of treatment methods are met with ignorant replies of “there is no cure, get over it” even though these people asking questions are often aware there is currently no cure, but are looking for methods to improve the physical appearance of the condition and improve their standard of living. Then on the other hand, there are those who have arrogance about treatments they’ve had success with and they deliberately discredit other treatment methods. Most people with Vitiligo understand that each case is different and people do or don’t have success with different treatments so it just breeds negativity and stupid arguments. I’m working on a side project for an on-line resource for unbiased Vitiligo information that is supported by medical publications and multiple references , more to come on this in a blog post at later date.

In other news, two weeks today I fly out to Jordan!

I’m pretty excited, it’s going to be a fantastic experience and hopefully will benefit my Vitiligo greatly. I’m going to try and blog a handful of times whilst I’m over there and with some photos too!

Finally, it seems the blog is getting a little traction! I’m getting many more unique hits a day and it’s moving  up the Google rankings so that’s positive. I’m enjoying writing it but as you can tell, I often struggle to find time. I’m going to make a concious effort to update on a more frequent basis and possibly make the posts and content more interesting with pictures.

This has been a long-ish one so well done if you made it to the end! As always, feel free to leave a comment below, I try to reply to all of them.

Next time you hear from me I’ll be in Jordan! 🙂