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Dan Neuffer's CFS Unravelled

Posted Mar 01 2013 12:00am

I highly recommend Dan Neuffer’s for anyone with ME-CFS, FMS, Gulf War Syndrome, Lyme, CIRS, and other NEIDs (neuro-endocrine-immune diseases). I also think it will help family members to understand more about the variable symptoms we have and to support us in our efforts to heal.

Dan has a knack for simplifying complex science and presenting it quite clearly to a lay person. He wrote the book after healing himself from CFS, which disabled him for 5-6 years. After recovering sufficiently to exercise and return to a full life, he began meeting other people with ME-CFS, some of whom had recovered and some who just wanted to know what he had done. Dan’s generosity and desire to help others was made further evident in offering his book FREE as a Kindle book through Amazon. If he hadn’t done this, I never would have found the book due to the fact that I’ve stopped reading books, blogs, and forums on ME-CFS unless I’m searching for information on a specific issue.

Dan reminded me of the strategies I used to recover from CFS three times! (Okay, so maybe that's not a TRUE recovery, but each time I recovered to 90% and was able to live a productive, joyful life.) I did these things partly intuitively, and partly because I had no idea what was really making me sick and figured the best I could do was heal the things I knew were wrong, such as my gut, my endocrine system, my emotions, and my chattering mind. Each time I (almost) recovered, as I thought about getting back to work and even took some steps in that direction, some very stressful thing happened in my life, and this stress plunged me back into ME-CFS even though, when I first came down with it, I was having a much less stressful year than my normal life as a college professor.

The first time I relapsed I was still working hard. It had been six years since I had come down with a virus that affected my brain, but I thought I was cured and just having a few problems of aging or stress.  However, the man I fell in love with during a year in Florence on a research grant, and stupidly married, turned out to be extremely abusive. When I escaped from him, in abject terror, my adrenals were in overdrive, my body was depleted of nutrients, my cell membranes were damaged from oxidative stress—all things that Neuffer points out contribute to the pathophysiology and chronicity of ME-CFS.  Worse, I had PTSD and could neither sleep nor relas. I found yoga, meditation (using the Centerpointe technology) and energy work to bring calm into my life. I also made an effort to improve my diet thanks to the advice of a local, holistic doc. In sum, I followed Dan’s recommendations because they came to me as the right thing to do.

The second time I relapsed was six years later. When a former renter set fire to the rental house I owned I went into shock. Arson had been attempted the week before and I’d called out the arson squad to investigate. I felt vulnerable, considering that the fire was started shortly after I finished cleaning the house and drove home. My adrenaline rush was a normal response, but I couldn’t shut it off.  For weeks I was so charged up that I had to go out running every morning to burn off energy (and I’m definitely not a runner) but this gave me a great sense of pleasure after many years of being unable to walk around the block or around a supermarket.  However, because I could only sleep every other night, I surely was burning out all the reserves I’d accumulated over the past few years of careful rest.  

I went to the Tree of Life Rejuvenation center in Patagonia for a vacation, decided to see Dr. Cousens, and followed his recommendation to stay an extra week to do on an (un)supervised raw juice fast. While the fast calmed down my system, it did so by depleting amino acids needed for detox, burning up muscle as well as fat, and within two days of returning home, I developed severe orthostatic intolerance.  Within six weeks, my peace of mind was gone, my blood sugar regulation shot, my sleep disturbed, and my brain unable to concentrate. The work and diet that had helped me heal no longer seemed to make any difference.  And so I started taking classes in natural healing.  I soon became a certified naturopathic endocrinologist and built myself up by supporting my adrenals and other endocrine glands. I healed my gut by going gluten and dairy free (not cheating was really important here) and, with the help of a pharmaceutical drug, rid myself of an intestinal parasite that had weakened me since 1974.  I studied hair mineral analysis and balanced my body’s minerals while doing gentle metal chelation with OTC supplements.  All this greatly improved my functionality and had me teaching yoga daily, writing my memoirs, and starting to take care of things I’d let slide for the past four years. When I got to the point where I could hike for an hour and ride my bike at a decent pace, I thought I’d never crash again.

Yet I did. This time it was the stress of ending a long term relationship in 2007. I crashed, worse again this time than ever before, with a new set of debilitating symptoms that didn’t respond to any of the previous supplements, meditation, exercise, and non-toxic lifestyle regimes I’d explored.  I’m still building myself back up after five and a half years.

The one thing that has helped me the most this time was understanding the role of environmental toxins, such as indoor mold, in creating physiological stress.

What do I mean by physiological stress?  I mean the kind of stress happening in the body as it attempts to eliminate and contain toxins and pathogens, or as it attempts to adjust body temperature, blood sugar, and electrolytes to cope with changing conditions. This stress is a challenge to the body, just like strong emotions, over-exercising, or having too much to do and not enough energy to do it. A healthy body deals with it easily. A body living with a chronic NEID does not.

Dr. Alan Vinitsky worked with me to get to the bottom of my failure to recover, by doing tests that no doctor had ever done before. He’s a brilliant physician, and because he studied with Bill Rea and Ritchie Shoemaker, among others, he has a very broad knowledge base.  He found that, in addition to Lyme which had never been diagnosed before (he used Neuroscience’s new test, My Lyme I.D.), that I was a classic mold illness patient.  Just before I got the test results back, I read Shoemaker’s Surviving Mold, in a moldy hotel resort where I experienced an exacerbation of all my symptoms.

When I got home, I did what nearly everyone does: I got a remediator to clean up my house and tried to save everything I could. Within a few months, I had to leave the house and the town where  I lived for most of my adult life. Because of the dampness in that area, I was inhaling mold spores and mycotoxins daily.  Shoemaker has shown that people who don’t detoxify mycotoxins on their own develop a chronic inflammatory condition in which the immune system is always activated and damages cell membranes until vision, brain hormones, and other functions cease to work effectively. Thus, the body’s own response to toxins and pathogens creates a continuing physiological stress which leaves us vulnerable to any major increase in stress.

Amazingly when, thanks to Lisa Petrison and Erik Johson sharing their recovery stories, I left my house and belongings and moved into a tent in the desert (which was actually quite stressful on a physical level), about 18 of my 25 ME-CFS symptoms disappeared. It still amazes me that oftentimes I find myself standing at the table reading my e-mail when there are empty chairs nearby.  I never did this in the past, not since before the onset of ME-CFS in 1987.  Orthostatic intolerance was the one symptom I could never get rid of until I took this radical journey. 

Things aren't perfect, however.  I still have pretty severe cognitive deficits, a rigid ANS, a poorly regulating hypothalamus, and now a new, amazing sensitivity to infinitesimally small amounts of mold which keeps me from going into many buildings, sleeping on a real bed, and living in a normal house.

Many well educated professionals consider CFS to be an illness of toxicity. Because of this theory, people with CFS explore various detox protocols. But they rarely work! In reality, most everything that pushes detox makes us worse. Dan Neuffer understand this and doesn’t recommend detox, since he doesn’t give much credence to the toxicity theory. But just because detox rarely works does not mean the toxicity theory is wrong.

Cellular toxicity CAN and does cause all the symptoms of ME/CFS.  Dr. Bill Rea of the Environmental Health Center has documented this in great detail in his books. For many of us, it is the missing link, as it was for Lisa Nagy, MD, who is now recovered sufficiently to travel the US lobbying and teaching about environmental illness. Her recent lecture at the University of Pennsylvania Medical school is worth the hour spent listening here:  http://present.knowledgevision.com/account/kv-pr/subaccount/vpm/link/Nagy_Penn_Feb2012.

Toxins damage the ANS, CNS, and ENS (e.g the nervous system), affect all cellular processes and the functionality of the extracellular matrix. One class of toxins made by mold (the mycotoxin tricothecenes) was found to create adrenal failure in a research study Nagy discusses. Those same tricothecenes were used by the Soviets in biological warfare, as explained by Dr. Dennis at http://www.sinusitiswellness.com/articles/mycotoxins-cancer.html

One of the things I learned in my naturopathic study is that the body won’t be able to detox when it has weak adrenals.  Nor can it put the energy into eliminating toxins when it is caught in the stress of surviving.  Neuffer makes this point and therefore recommends that CFS patients work to heal gut and adrenal issues first.  I would add that, even before addressing these areas, a patient has to find out whether mold, pesticides, or other environmental toxins are triggering their system from outside or inside.  There are tests of body fluids from Genova/Metametrix and Real Time Laboratory as well as ERMI and HERTSMI-2 tests of home or workplace interiors, The Shoemaker panel of tests can also help your  physician determine whether you have CIRS, chronic inflammatory response syndrome.

Neuffer’s recommendations can make a huge difference for individuals who are not extremely toxic, or for those whose detox pathways have not been badly damaged by toxins. Shifting to an organic, non-toxic lifestyle, reducing stress, and cultivating hope and positive mental states aids recovery from every illness. However, those with damaged detox pathways, genetic SNP’s that slow their detox, and who live in the presence of environmental toxins may not make significant progress with such changes – not because they fail to follow one of the steps, but because their bodies cannot eliminate stored toxins as fast as they take them in.

Until one eliminates the provoking agents, the immune system, the endocrine system, the nervous system, and every connected organ in the body will continue to act and react in the natural effort to bring homeostasis.

Thanks for your work Dan.  May your book and website help many people recover their health and their lives. You are doing a great service to the ME-CFS community.  I hope you reach out to the greater community of NEID (neuro-endocrine-immune disease), which includes GWS, Lyme, PTSD, and EI.  What you have to say will make a big difference in the lives of all these individuals. 
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