Still fumbling in the dark about treatments for LS

Hi Pitta,

I'm 66 and have had LS for about the same length of time as you. I find the doctors frustrating, and I know they find me frustrating too because I'm always trying different things - diet, healthy creams. Changing my diet was a good one. Vitamin creams were good for a while, then I couldn't use them because eventually they'd cause a flare reaction.

I keep trying because I think that cortisone is not a treatment. It deals with the symptoms but it does nothing for what's causing the disease and it thins skin that's already thinning.  

I tried testosterone cream once - didn't work. More recently I went to an acupuncturist because I read somewhere there was some good work being done with LS there. I left off cortisone for three weeks and used the stuff from the acupuncturist and the LS got worse. I think he was a fraud, to be honest. If I were to do it again, I would look around and talk to a few acupuncturists before I went ahead with anything.

So my recommendation would be: talk to a few different doctors before trying anything.

All the best with whatever you decide to do!! It's an interesting, sometimes crazy journey, isn't it?

Andrea

I have been on HRT for nearly 30 years. It was when I had a large bleeding polyp and was pushed into substantially reducing the dose and type of HRT from a combined pill to a mirena coil and an minute dose of premarin...After a few months a massive ITCH ie redness skin loss swelling fusing splitting tearing- you know the usual things in a flare up - and the diagnosis. I was told by another gynae - I refused to go back to the first one- that a sudden change in hormome levels combined with stress can  flip into an auto immune condition.. All that cortisol flowing around with nowhere to go. So do try  to manage your stress.

I am also coming around to thinking that  our DNA will make us more suceptible to autoimmune conditions and that it is worth while to  have a genes test to discover WHAT our individual vulnerablities are. One sensible person said that while we cant change our genes we CAN change the way they operate - ie by our diet and our behaviour (stress management etc)

There are on line sites that will undertake gene testing however if you can get it done by your GP referral to a genetics clinic so much the better - it will make the explanation of how to manage the information so much better.

in the meanwhile i imagine you have seen the Dr Goldsteins webinar- that is the most detailed protocol the medics have come up with to date. However Do check out the methods others have found to help manage their conditions

Good luck 

 

Dermovate is the only thing that works for me.  I have tried natural remedies but this is the only thing that keeps it away and if i have an outbreak i use a small amount every night until it clears i am now down to once a week.  People on this site say it thins the skin but to a point that is what you want because the lichen thickens it. Good luck and try not to stress i refuse to let it rule my life as i am only 59 years old.

LS is indeed a skin disease that is hard to get 'a grip on'.  If it wasn't for this website/forum I don't know how I would have managed.  The mental strain, for one, is enormous.  

Dr Goldstein sheds some good light on things. Though I had to watch it several times to really absorb what was being said and shown.  

Going over various comments from people, I think you can detect similarities.  We are not as different from each other as one may in first instand think.  It just is often a different way of expressing, yet, boils down to the same. 

I still use hormone replacement and think it is beneficial to me.  I don't, however, use premarin.  That one drove me literally and figuratively bananas.  I use a different one called Bi-Est (estrogen, just a very small drop each day in the morning) and Progesterone (small capsule) every evening.  (My age is 65. Due to hysterectomy I had an instant early menopause at age 42)  I have been using the hormone replacement since I have been trying to get a handle on LS.  I have noticed that I benefit in other ways as well.  More strength while doing yard work for instance.  

Furthermore, I think that it is 'the whole package' that has made my living with LS manageable - glob, HRT, baking soda baths and rinses, coconut oil, diet (no sugar, no alcohol, no gluten, limited dairy)