I'm always on the lookout for new treatment methodologies. Don't get me wrong, I'd like nothing better than to go to a regular doctor, have him/her run some tests, tell me I have ME then prescribe the standard ME treatment plan -- you know, the one that has been arrived at by research.
Unfortunately, that option isn't available to those of us with ME. If we're lucky, our Dr. may have heard of ME, but that's where it stops. They usually then break into a mini lecture on what it is - which really means what they think it is, not what it actually is. Their version is quite often full of wrong information and harmful treatments which make us worse. BTDT and noooo thanks, I am not going there again. I learned this the hard way.
In almost all other illnesses (or perhaps all illnesses), having to educate the Dr. on what the disease is, is unheard of. Imagine having heart disease and having to explain to the Dr., what the heart is, how it's supposed to work, what heart disease actually is, why/how your heart isn't working and convince him/her it's actually a real disease. Literature must be gathered then taken in to backup the claim -- not too much literature because it will put the Dr. off. Not too little information because there needs to be enough to actually educate him/her. Given it's such a complex disease, this initial 'education' must be on a basic level with hopes it will lead them to look into it further.
You can spend hours collecting such info and there's no guarantee they will actually read it. Many times, it ends up in their garbage can. Their time is important after all, your time, not so much apparently.
This treatment is demoralizing to say the least, especially when it happens time after time, Dr. after Dr.
Even if you are fortunate enough to find a Dr. who believes in heart disease or better yet knows about it, there isn't any real treatment anyway.
This is the way it is with ME. We are therefore left to research our illness on our own and hopefully come up with things that will help. Seeing as there is no cure available YET, symptom control is where it's at for now. Reducing the severity of symptoms is better than nothing.
There are some helpful books. Other ME sufferers are a wealth of information, so it's good to connect those folks. There are lots of websites with helpful information.
There are also many 'alternative' health practitioners which help reduce the severity. This can run into a lot of money though, with no guarantee of any improvement.
Enter my newest practitioner -- a chiropractor. This husband and wife team does not seem like a 'regular chiropractor' (or what I think of when I hear chiropractor). The intake assessment appointment alone was at least an hour, probably longer. In addition to my full health-history, which they went over with me in depth, they did a several different tests, including a thermal scan of my spine to see the state of my autonomic nervous system. I was most interested (and excited!) in this test as I've read (whether it's true or not, we're not sure -- we're still waitin' on that research too) our autonomic nervous system is out of sync with our brain.
I'm very anxious to see what my scans show, the treatment plan and most important, if this helps reduce the severity of some of my symptoms. I know this will not cure ME, but at this point dealing with the symptoms is the best we can do. Any reduction in severity is a help.
Stay tuned! I'll share the details, results of my scans and the progress of my treatment.
Seeking...
Balance....despite the chaos!
Unfortunately, that option isn't available to those of us with ME. If we're lucky, our Dr. may have heard of ME, but that's where it stops. They usually then break into a mini lecture on what it is - which really means what they think it is, not what it actually is. Their version is quite often full of wrong information and harmful treatments which make us worse. BTDT and noooo thanks, I am not going there again. I learned this the hard way.
In almost all other illnesses (or perhaps all illnesses), having to educate the Dr. on what the disease is, is unheard of. Imagine having heart disease and having to explain to the Dr., what the heart is, how it's supposed to work, what heart disease actually is, why/how your heart isn't working and convince him/her it's actually a real disease. Literature must be gathered then taken in to backup the claim -- not too much literature because it will put the Dr. off. Not too little information because there needs to be enough to actually educate him/her. Given it's such a complex disease, this initial 'education' must be on a basic level with hopes it will lead them to look into it further.
You can spend hours collecting such info and there's no guarantee they will actually read it. Many times, it ends up in their garbage can. Their time is important after all, your time, not so much apparently.
This treatment is demoralizing to say the least, especially when it happens time after time, Dr. after Dr.
Even if you are fortunate enough to find a Dr. who believes in heart disease or better yet knows about it, there isn't any real treatment anyway.
This is the way it is with ME. We are therefore left to research our illness on our own and hopefully come up with things that will help. Seeing as there is no cure available YET, symptom control is where it's at for now. Reducing the severity of symptoms is better than nothing.
There are some helpful books. Other ME sufferers are a wealth of information, so it's good to connect those folks. There are lots of websites with helpful information.
There are also many 'alternative' health practitioners which help reduce the severity. This can run into a lot of money though, with no guarantee of any improvement.
Enter my newest practitioner -- a chiropractor. This husband and wife team does not seem like a 'regular chiropractor' (or what I think of when I hear chiropractor). The intake assessment appointment alone was at least an hour, probably longer. In addition to my full health-history, which they went over with me in depth, they did a several different tests, including a thermal scan of my spine to see the state of my autonomic nervous system. I was most interested (and excited!) in this test as I've read (whether it's true or not, we're not sure -- we're still waitin' on that research too) our autonomic nervous system is out of sync with our brain.
I'm very anxious to see what my scans show, the treatment plan and most important, if this helps reduce the severity of some of my symptoms. I know this will not cure ME, but at this point dealing with the symptoms is the best we can do. Any reduction in severity is a help.
Stay tuned! I'll share the details, results of my scans and the progress of my treatment.
Seeking...
Balance....despite the chaos!
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