6 responses to “CFS & Fibromyalgia: The Meaning of Recovery”

  1. Laura Henze Russell

    Based on things I have learned in the past two years, I think that some people get fibromyalgia and/or CFIDS and/or ME from infectious and biotoxin triggers, some from heavy metal toxicity triggers, some from chemical exposure triggers, and some from some combination of the above; and that all of this is mediated by gene type that determines how your immune, methylation, metabolic pathways react to toxins. I had classical fibromyalgia for two decades, then two years of escalating, bizarre, multisystemic health challenges.

    By luck – after giving up hope – I learned I had reactivity to dental materials, in particular to mercury in dental amalgam; the problems began soon after I stopped breastfeeding and had deferred dental work including removal of amalgams by a regular dentist without special safety equipment or protocols as I now needed some crowns. I also had amalgam in two bicuspids, and had gold crowns placed next to composite crowns that had bits of amalgam underneath, leading to a galvanic reaction that causes degradation. The load of mercury did a number on my gut, causing me to become allergic to more and more things.

    With remediation by a biologic dentist using materials that were safe for me from biocompatibility dental materials testing, and working with a functional medicine/integrative MD to look at genetic susceptibilities and allergy and immune triggers, and addressing them, I experienced a dramatic recovery. Over the past two years, I also addressed mold toxicity for which I also have a genetic susceptibility, chronic lyme with a non-generic form of a common Rx, and some hidden dental/jaw infections with the biologic dentist.

    All the pain, fatigue, balance issues and brain fog have gone away, it is like I am back in my 30s, at almost 60. Sleep is still a bit of an issue, but I feel refreshed.

    I have met other people around the country who have recovered. But a good friend has not, I believe her bad combinations of genes and bio, chem and heavy metals toxins are not yet fully understood.

    I found it essential to get out of the medical orthodoxy box I was in for 20 years, where doctors gave palliative Rx but did not know how to peel the onion and diagnose and treat multiple systemic issues with genetic susceptibilities as a factor.

    I founded Hidden River Health Challenge to help people learn about the impact of toxins, share, and take action to help themselves and others. Please join us, and please sign my petition for a Surgeon General Report on Dental Amalgam and Mercury Health Risks, at http://www.credomobilize.com/petitions/for-good-health-end-dental-mercury-poisoning .

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  2. Rich

    Great article, beautifully written, and a pleasure to read. My take away is one of hope–patients truly can have a big impact on their disease by the choices they make. In the absence of a cure or effective treatment, it is important for patients to know that food choices and lifestyle choices do make a difference. This is a horrible disease that can be made much worse by eating a crummy diet. Having this mecfs means that you need to have extra respect your body like a temple and lavish it with organic foods, vegetable juices, and TLC

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  3. Citygirl

    Did Lisa actually go to Dr Bell’s lecture?

    I don’t think that there is anything positive to spin about his patients failure to recover to pre-CFS levels.

    Recovery is the absence of disease.

    Remission is remission

    Improvement is improvement

    Please don’t try to distort this. It harms us when you do.

    The news that some of his CFS patients has improved is great. Some have not improved. I sure bet that the CFS patients who have improved but not to pre-CFS levels would love to get completely better.

    Please so not distort this message to try and argue that CFS can be “managed”. Tell that to all the patients who are dying early of cancer, heart disease and suicide.

    I’m largely bedbound and in pain and with viral symptoms each day. When I exercise I get much worse. I can’t work, have a social life or look after myself. That’s reality.

    The message from Dr Bell at the IiME conference was that his CFS patients, even those who thought of themselves as being “recovered” hadn’t. That’s the message we should be getting across, that few recover.

    We need research into the causes and proper treatment. Arguing that improvement is “recovery” harms our chances of this incurable neurological disease being taken seriously. It also implies that symptoms can be “managed” and that’s just plain wrong and dangerous.

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  4. victoria

    Once again, having heard a comment about a follow-up study of an outbreak in Lyndonville, NY, I wondered if it was merely a “trigger” that caused the outbreak that accounted for the very few that recovered. I’m sure all those who have not recovered would have been positive for the very first biomarker found for autoimmune diseases as thousands of patients worldwide were tested and all were positive.

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