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    What wonderful comments! A few things I haven't seen covered:

    Hook up with one of the support/advocacy groups, this is what my husband & I belong to:

    for all the usual reasons, PLUS that they can steer you to a doctor (hopefully local) who understands the illness and won't get bogged down with defensive non-diagnoses.

    You might check out the "Wheldon Protocol", here's a site:

    Which details this British doctor's theory that these illnesses can be the result of bacterial infections which have become chronic as a result of the bacterial reproductive machinery moving into the cells of the body and parasitizing their functions. The body no longer produces antibodies for them, thus evading detection, but short-term antibiotics won't cut it, you need long term cycles of specific, cheap antibiotics and certain metabolic antioxidants to take the pressure off the immune system.

    This line of thinking makes a lot of sense to me because one of the parts of auto-immune disorders that present medicine just throws up their hands about is WHY the body would start this immune overdrive which creates all the painful symptoms... the parasitic bacteria theory explains why so many of these sufferers have such allergic over-reactions to common substances; the body is at an extreme stage of invasion alert and can't handle it. This theory holds that there IS a source of the immune system overactivity and that must be addressed.

    This is the approach we are using with our own doctor at our next appointment, because my husband is at the stage where he not only gets whatever is going around, he gets it a dozen times and it's not going away.

    We are going to ask for the long term antibiotic therapy that is also what ILADS (The International Lyme and Associated Diseases Society) recommends. Our society thinks it's okay to give people with acne long term antibiotics... so why not for something that has much greater health implications?

    The diet theory holds much promise, especially with undetected food allergies, and this is where our best success has been by going AGAINST most prevailing dietary advice: my husband has had his greatest success by eating low carb.

    He has the type of CFIDS that has resulted in slow and steady weight gain, from lack of exercise (you can't recondition people who can't even walk across the room sometimes without exhaustion, the PUSH-CRASH syndrome works against you, and one setback will result in loss of conditioning again. And yes, your wife's condition, wherein she pushes until she crashes, has this name.)

    By eating low carb most of the time he has lost 50 pounds and gotten his blood pressure and lipid numbers into much better ranges. Here's the thinking behind this type of illness and why low carb works:

    The body has two metabolic engines, which they can run either/or, not simultaneously. There's the ketogenic engine, which runs off proteins & fats, and is the evolutionary daddy of them all, and there's the carb engine, which became adapted as a result of agriculture, and runs off carbohydrates.

    The bacterial invasion the CFIDS/Fibro patient is invisibly battling also runs off the carb engine. By eating low carb, your body is using the ketogenic engine for its needs, and impairing the carb engine the disease uses.

    I know someone with Fibromyalgia who goes into complete remission when she sticks to a low carb way of eating. My husband lost weight and improved his health for the last three years this way. It's something to think about if, as so often happens, someone who feels ill reaches for high carb "comfort food" as all they feel like eating, and then adds blood sugar highs & lows to the equation.

    A few more things before I have to go... she's depressed because she's sick! She's NOT sick because she's depressed! Okay? Does everyone have this straight now?

    One thing that really helped us was seeing a good Cognitive Behavioral Therapist. He realizes that any depression my husband feels is because of the real issues he is struggling with, and what we discuss is Coping Strategies; how to pace, how to work around the concentration difficulties, how to deal with people who don't get it, what treatment strategies are worth our limited resources.

    One of the big problems we have with family (because our friends understand, being voluntary) is that my husband doesn't LOOK sick. When he girds up all his strength for a long awaited family dinner or outing, he seems somewhat okay. But he's not. He rested for a week or two to get here, and he might have to rest for a week or two after, just to get this far: seeming normal for a few hours.

    He's not a slacker! Why would he walk away from a high powered professional job and give up his just-starting-to-really-make-it artistic career for a life of sitting on the couch and feeding the cats? He doesn't have the concentration to paint anymore, and that is terrible for him. A slacker wouldn't get as far as he did before. Your wife WANTS to accomplish more. She can't, because of this disease.

    Make no mistake about it, she has a disease. I'm a citizen lobbyist who goes to DC every May to walk the marble halls and try to get more funding and recognition for the MILLION people who are struggling with mysterious, unclassifiable symptoms just like your wife. They were bright driven people before they were sentenced to the living hell they have now. And I do it because THEY CAN'T.

    The last time I went there was another lobbying group which included a quadriplegic. And HE COULD. Yes, he has serious difficulties, but he can travel, he can go up and down the halls and plead his case. My husband can't do that. He just can't.

    In closing, you might not know the story of Lauren Hillenbrand. At 19, she got CFS (now CFIDS.) She's been mostly housebound ever since. Sometimes she could only write ten minutes out of the day, or not at all. She researched with the phone, internet, and networks of friends who did legwork for her. And she wrote Seabiscuit, which became a bestseller and led to an Academy award nominated movie.

    What's she worth? Exactly what she was before she was a bestselling author, and after. She's a strong, brave, passionate woman who is doing the best she can, and is valuable enough to have people who care for her not because of what she can do, but for what she is.

    And that, in the final analysis, is what we will be judged on.

    I try to live by the Three Reality Principles.

    by proudlattedrinker on Sun Jan 28, 2007 at 07:42:56 AM PST

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