The thing is, with diseases such as yours or others that are hard to find the cause and/or cure/treat you have to become your own doctor. First, realize when people offer up suggestions they are trying to help you. Second, while 3 doctors may have spent their career studying something it doesn't mean that a specific diet or treatment will not help you.
A friend of mine has hives. He's seen a ton of doctors and none of them have any clue what is causing them. Other than having a few hives almost all the time he's perfectly healthy. So he has had to become his own doctor and at least attempt a process of elimination with foods and other things that he comes into contact with on a regular basis. At a minimum he gets some illusion of control and is working a process that may find something.
I agree that they might have been just been trying to help, but it's important accept that you might have limited knowledge of something when giving people advice, especially medical advice.
My doctor has prescribed medication that has done a good job of treating the illness so I haven't had to seek alternative remedies.
I'm actually starting a new startup centered around patients sharing their experience with various treatments.
I'm actually starting a new startup centered around patients sharing their experience with various treatments.
That's a great idea! After helping my friend research I think the most challenging part of what you're doing is getting people who are cured to talk about their experiences. It's the old problem that those that are happy without any problems are not the ones who post all day long :)
A friend of mine has hives. He's seen a ton of doctors and none of them have any clue what is causing them. Other than having a few hives almost all the time he's perfectly healthy. So he has had to become his own doctor and at least attempt a process of elimination with foods and other things that he comes into contact with on a regular basis. At a minimum he gets some illusion of control and is working a process that may find something.