Lets Create A Database and Find Our Own Cure
Posted , 21 users are following.
I am frustrated. I don't feel doctors or pharrmaceutical companies are doing enough. It occurs to me that if we create a database of our experiences we can help eachother and possibly find a cure together. I am sick of putting strong pharmaceuticals on my body. Maybe there is something else. It's possible that there isn't but have we really compiled all the date from all the people to see what is working.
Right now I am trying pure vitamin E oil on my labia. If it doesn't work, I can share that. If a few other people try it and it doesn't work, we can discard it as an option. We can track clobetasol, protopic and every other idea in the same way. Let's see if anything is actually working.
If vitamin E doesn't work and I realize it probably won't, my next idea is pure aloe right from the plant. Unless we work together to systematically rule out options, I believe we'll never move beyond heavy duty pharmaceuticals.
Is anyone interested in this idea?
Paula
5 likes, 91 replies
anna80050 paula92906
Posted
jackie73005 anna80050
Posted
kskms14 paula92906
Posted
They have learned much more about this disease since then, but still not
near enough.
lizziewizzie kskms14
Posted
margaret289 paula92906
Posted
margaret289
Posted
bennetta margaret289
Posted
My doctor diagnosed me without doing a biopsy at all. I suppose we could also post what our specific symptoms are.
claire12259 paula92906
Posted
bennetta paula92906
Posted
That being said, yes something should be documented. I'm convinced my use of the IUD Mierena and/or my tubal ligation surgery set off my condition. No one I'm aware of in my family has it. I also have insufficient breast tissue so maybe it's a hormonal thing in me. Don't know and my doctors are clueless other than providing me with clob/elidel
paula92906
Posted
lizziewizzie paula92906
Posted
liz
hanny32508 lizziewizzie
Posted
kskms14 paula92906
Posted
your age
when symptoms began
the medical fiasco involved in finding your diagnosis
your detailed symptoms
what you've tried and the result, both prescribed and self treatment
your partner's (spouse) views, opinions, frustrations, etc
anything else you find pertinent
Bringing the whole picture to light and getting it published would be instrumental in getting the attention of the research arena of the medical profession.
This is a miserable disease and most unknown because it is "delicate" in nature and humiliating or embarrasing to discuss.
Just my thoughts...
anita1951 paula92906
Posted
I went on holiday to Devon for a week and all my symptoms cleared, couldnt believe it, it was heavenly. On returning home it all came back with a vengance, after some working out I found the only thing different was the water. There is no flouride in the water in Devon, but there is in Birmingham where I live.I had a water filter jug and a water filter fitted in my kitchen and also bought bottled water. Things have improved dramaticaly I did have a slight relapse so I put steroid cream on for a day and changed the filter in the jug and under the sink and it seems to have done the trick. If everybody kept a food diary to see if it is an allergy causing theirs it might help, I am convinced mine is water, I have even got my Daughter to have a water filter fitted for when I visit her. I do not drink carbonated drinks, I had a sip of my husbands coke to take some tablets and I was in great discomfort.
Please let me know if any of you try bottled water for drinking, cooking etc and it helps
Best wishes
hanny32508 paula92906
Posted
My 'staples' still are: Baking soda baths and rinses, coconut oil, globetasol (for when it really gets bad)
Experimenting with new items but not sure yet what 'does the trick'. I can still not say that 'I have found a permanent cure". It is more a constant maintenance and diligent looking after LS.
Diet seems to make a difference. My intestines fair well with it.
Stress is still a major trigger. So is sugar, alcohol, gluten, cheese.