Declaring War On Your Illness
How To Begin
The solution is to ignore the typical Doc and listen to the $30K/person/yr Doc. They understand CFS/FMS. To hear from them without spending much money, one can read their books. The above referenced books are an excellent start. If you want to visit one, you may need to travel to a clinic that digs deep, or find a $3K to $30K/yr Doc in your area. Clinics that dig deep are sometimes referred to as "Chronic Fatigue" or "Functional Medicine" Clinics. A typical result of a CFS clinic is for 50% of patients to feel 60% or so better after 90days after dropping $2.5K. Recall that medicine and money are the same thing. Spending more will provide better results. Sometimes, a problem is found that cannot be easily overcome, yet understanding it helps craft a response to alleviate symptoms as best possible.
If you want to approach this on the cheap, one can read the primary books and then try different meds (some Rx, some not) to see if one feels better. Another way to save money is to purchase medical tests through the Internet (e.g. you send money, they send test kit telling you how to take a sample, you send the medical testing company the sample, and then they send you a report). The disadvantage of doing it on your own is you can easily waste time and money out of ignorance. George, the example case featured at this web site, found that only about a third of the tests that he bought through the Internet were useful. Yet he was willing to spend the money he spent to get the results that he got. He decided that he had to do it, or his life was ruined, and he was not going to let that happen without a fight.
Fire Your Traditional Doc and Make Yourself Responsible
It does not help to delegate the responsibility of resolving your CFS/FMS issue to the Traditional Doc who you have being seeing for some time and who has not helped you to any significant extent. Parking this responsibility with that Doc will mean you will get more of the same, going forward. Making yourself responsible is a better option. In a sense, you may have to "mentally" (not literally) fire your Doc. Meaning, you continue to see and talk to him/her, yet you don't think of him/her as being the solution to your problem, and you seek solutions elsewhere. In a sense, you become your own Doc.
How To Practice Medicine On Yourself
The questions you are probably asking yourself is, "How does one practice medicine on themselves when they don't know medicine". For details on how to do this, please click here.
Suggestions on How One with CFS/FMS Can Proceed
If you have CFS/FMS/GWS, it is suggested that you proceed with the following:
1) Budget (i.e. commit to spending) something like the following to fight your battle:
* 1 year
* 1 hour a day reading about CFS/FMS and medicine
* $3000 for 15 tests
* $500 for Rx medications and supplements
* $1000 for Docs
2) Read the various pages at this web site, including many of the hyperlinks.
3) Set up a 3ring notebook. Place dividers in the notebook. Label them: Digestion, Detoxification, Allergies, Heavy Metals, Fungi, Immunity, Neurotransmitters, Adrenal, Thyroid, Kreb's Cycle, Viruses, Docs, Test Labs, Drugs, Vitamins, Web Resources, Books, My Vitamins, My Journal. Place paper at each section.
4) Read the main books (i.e. Lipski, Conley, Burton, Ali, Bock). As you read, you will see things that can cause your symptoms. They may be obscure. You may think they are not you. Ignore this tendency for now, and for each disorder that can cause a symptom you have, generate 1 page for it. Place the name of the disorder at the top, and the test for it. And then include several notes. Note that when you start your battle, you do not need to know too much about any one disorder. It is only after you get a positive on a test that you need to seriously study what you found. On the first pass, you want to know disorders, tests, and a few things about the symptoms. Expect to spend something like 1Hr a day for a year or two, "studying" medicine.
5) As you search for pathologies, do not expect to find one big item that is responsible for everything. Instead, think of your body as a puzzle. Each test result is a piece of the puzzle. Some pieces are big and important; whereas others are less so. Expect to find 1 to 3 pathologies that are somewhat serious (i.e. could be responsible for the bulk of some of your symptoms), 1 to 3 that are important yet may not be directly responsible, and 3 to 30 things that are minor and can be related to your symptoms, yet only indirectly.
6) If you have FMS, click here for a more detailed strategy. If you have CFS, please click here for a more detailed strategy.
Do You Want To Fight This Major Battle?
Consider Step #3, "Read the Primary CFS/FMS" books a little test to see how much energy you are willing expend to fight this battle. If you do not read these books, this web site probably cannot help you. This is because this site advocates a system that requires that the patient be somewhat knowledgeable in a comprehensive CFS/FMS medical approach. Knowledge of this approach is necessary in order to manage it's implementation, even if much is delegated to Doc's who specialize in CFS/FMS. If what needs to be done is not understood by the patient, they will probably delegate to the wrong people, causing time to slip by while little progress is made. And the patient is surrounded by many Doc's who do not understand CFS/FMS. Possibly 98% of the Doc's a patient meets do not understand CFS/FMS, no matter how "highly regarded and esteemed" they may be. Also, YOU need to be able to deal with the "how much should I spend on each test" issue. Since it is your money, you are the one that makes these decisions. And if you do not read these books, you will not know how to buy; in which case, you may freeze up like a deer in headlights and do nothing. In summary, you got to read. If you don't like to read, stop complaining and start reading.
In order to fight this battle, you must be in the same mode you were in while in school. Desk. Books. Pencil. Paper. Notes. Read. Think. Organization. Reading 4 books is just the tip of the iceberg. It is only a small portion of the work, if you are lucky. Also, you must combine this with a willingness to get on the phone, and call 5 or so clinics and ask them about costs, percent of patients that get better and in what period of time and how much better, etc. And contact 5 or so Internet Docs that specialize in CFS/FMS and ask them similar questions, availability of tests, costs of test, etc. And, the patient must be willing to capture all information into their notebooks or computer files. One cannot be sloppy with information. All information must be captured. You got to get organized.
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