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.
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
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 EnvironmentalHealthCenter 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
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.