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Internet research

Posted by barbaracat on October 5, 2005, at 14:27:03

In reply to Re: reporter seeks interviews AmyHarmon, posted by Laurie Beth on October 5, 2005, at 12:06:23

> In fact, I just thought of a third area where patients are doing a lot of internet research and then finding doctors who will at least discuss treatment options with them: thyroid disease, see

**Put me down for fibromyalgia. Mainly because most doctors don't have a clue what causes it, it's an orphan condition, and if you want to improve, you'd best do your own footwork or learn to just live with greatly diminished quality of life.

I'd like to answer your question Amy, since this format is fine with me and I look forward to reading others' opinions. It's the private contacting and covert feeling of discussing our board that way that doesn't feel right.

So, I consider myself my primary care physician with my other doctors as my healthcare team. I am not a licensed doctor but have much of the science background and so am not flying blind. For acute illnesses and accidents my first choice is my GP or the ER, for wellness and chronic conditions, I go to a naturopath. For mental health, both conventional and alternative modalities have been necessary. But the most help and information I've gotten has been through boards like this and my own research which I will then pass on to my heathcare team. Unfortunately, I do not have utmost confidence in any one of them alone, but I'm tired of looking and as a group, there's hope.

In fact, I'll stick my neck out and say any condition that is chronic and not immedidately life threatening, does not respond well or long term to drugs OR the patient cannot afford healthcare is a candidate for do-it-yourself healthcare and self-medicating, whether it's through the internet, or just talking with friends and family. In other words, there's been an erosion of trust in the current healthcare system and people are going elsewhere.

Many of us get disgusted with the inconsistency of our healthcare and eventually look for something alternative, like a naturopath, herbalist, who usually take much longer per session to become familiar with the underlying dysfunctions, and tend to suppport wellness instead of focusing on disease. They'll consider underlying conditions that most managed care physicians today don't have the time (or experience) to sleuth out. Unless those underlying conditions are addressed, the symptom will return.

But alternative practitioners aren't perfect by a long shot either. Sometimes you just run out of healthcare people because no one has the experience or talent to deal with the environmental illnesses that are coming to light. Unless you luck upon a talented specialist, the others simply aren't much help.

This is certainly true in my fibromyalgia condition. I've gotten bits and pieces from the many types of doctors I've seen but I've had to take the time and energy I've had very little of to put the pieces together and understand the 'why' of things - something rarely discussed in a doctor's visit for lack of time.

I'd boil it down to saying that managed care has removed the 'care'. Too much beaurocracy for someone who is desperate to feel better. And although I'd venture to say that the majority of people are pretty disgusted with managed care, they're either not aware of or can't find a good integrative care doctor where they might fare better.

Eventually you realize the necessity of doing your own detective work because we finally have the means (the Internet) and we make the time because we have the greater incentive. We'll do whatever it takes to get better.

Unless it's something mechanical, like removing or repairing something or employing wonderful high-tech machinery, conventional medicine is lacking. Most doctors cannot seem to look outside the pharmaceutical box, which is where you have to go for more than just relief from acute illness.

If they're not taking the time or interest to talk to us, to find out why we're sick, how we got that way and how we can keep well, then it's up to us, but unfortunately we're not always our best doctors either. The internet empowers our self-care, either for good or for making big mistakes. - Barbara




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