FAIR WARNING: You may not want to read this while eating if you are sensitive to "icky stuff".
Points I took from this story in no particular order:
- It amazes me how long people will keep going to doctors for help when they continue to not deliver results.
- Why do many doctors act like they have ALL the knowledge possible? Is their ego that strong that they truly believe that if someone has not gone though the same education and training that they went through, then they do not have the ability to perform studies using the scientific method to test their theories?
- Is this a case of "We didn't think of it so it must be wrong!"?
As a response to "the patient's" story, one of the head honchos of a university said "We don't make medical recommendations based on a single case report." Der...everyone, meet Captain Obvious. Wouldn't you want to investigate this case? I completely agree that you should not jump to conclusions based on a single case, but isn't it worthy of noting the experimental treatment's success? I would definitely like to see proper studies to test out the possible usage of this treatment as an option. Option being the key word because it may help in some cases and cause harm in others. Wouldn't you like to know these things?
Then, Sir Superiority states, "It's ridiculous and incredibly inappropriate." Hum...A patient goes to doctor after doctor after doctor for years upon end and none of them can give him the slightest bit of help, so he takes matters into his own hands and finds something that not only helps him deal with the symptoms, but actually shows to have reduced the signs of the disease. Let us visit our good friend Webster for a moment...
Ridiculous: arousing or deserving ridicule : extremely silly or unreasonable : absurd, preposterous
Inappropriate: not appropriate : unsuitable
So, what Senor Superiority here is saying is that educating yourself and searching for a cure to your disease on your own after doing what your doctor tells you to do does not produce any results is deserving of ridicule, extremely silly and incredibly unsuitable. Damn, that was harsh!
Having let all that out, I must also make the point that I do not have some all-encompassing distrust or angst against all doctors or researchers. Many of them have their heart in the right place and have a humble attitude about medicine and treating/healing disease. The honorable P'ng Loke is a shining example of this lack of ego and open-mindedness that I am alluding to. It is those with the attitude of Dr. Stephen Hanauer that inhibit the progress of medical research.
If a patient wants to take a chance on an unproven treatment, they should be able to release the doctors of liability and go for it. I would think that fits under what we mean when we say this is a free country. You are free to cause harm to yourself by taking an unapproved treatment if you so choose as long as you release all those involved from any liability.
This is another rant for another day, but I'm guessing that one of the reasons this is not possible is some asshole lawyer would attempt to sue one of the people involved if things had unfavorable results in spite of the release of liability. Even if the lawyer was unsuccessful, just battling the case would cost the accused significant money. So, many would still be afraid to help the patient out no matter what legal protection was offered to them.
If a lawyer doesn't get them, someone in the press will spew venom at them attempting to make a story for themselves. I just see many people being afraid to "stand up to the system" and take such a huge gamble with their reputation. For these people, their reputation is their means of income and that is the last thing that they would risk. So, they just say, "Sorry, but I'll have to pass on that..."
In conclusion, if you are having problems and being bounced around between different doctors because none can help you with their limited toolbox of approved treatments from their governing authorities, you have found the end of the beaten path. Now, you can either stop and give up, or you can get out your machete and begin your journey of education and experimentation through the wilderness, but be extremely careful and watch your back. Don't expect very much help, but be forever gracious to those that do choose to help.
If you are successful, congratulations and best wishes for continued health and happiness. If you are not, at least you didn't give up and maybe you were able to help someone else out as a result of your journey.
You never know what you will find on the other side of the mountain where no one from your village has ever visited to report back from. Personally, I would rather take the chance of encountering unfriendlies on the other side and deal with that situation if it arises than give up, sit down, and wait to die.