Thursday, November 10, 2011

A reply to comments

I thought I’d take up the challenge of answering Karen J.  She wrote, in comments to my most recent blog,
You "felt the lethargy and fatigue of" your "WORST CFS", so you took a swim, did some yoga, and were still tired?  Can you see what's wrong with the picture Janis? Seriously. Talk about stressing or overstressing your overstressed, overtaxed adrenals.
I still don't know what you're running from. I hope you'll address this in your next post.

Okay.  I can see that someone who doesn’t know me and my activity level would find my wording vague and confusing.  I intended to convey the quality of the fatigue and lethargy, not the degree of it.  Obviously, during my worst times, I wouldn’t even go in the water on a warm day because I’d feel too cold.  But those of us who live with this illness know that fatigue doesn't even get close to capturing it what we feel.  It’s a close approximation, and sometimes moving around, cooling off, or getting fresh air can transform one from turtle mode to rabbit mode.   Then, I used the wrong word.  I didn’t 'swim' using any action that propelled my body from one side of the pool to the other.  I just took a dunk and cooled off, then hung over the edge of the pool. 

I often do yoga when I’m very tired.  I have yogini friends with CFS or Lyme or CIRS who also do yoga. Our practices vary, but they don’t entail 108 sun salutations.  Mine often has consisted of a practice entirely on the floor on back and belly.  I start this way, stretching slowly and breathing.  Sometimes I feel energized enough to do some standing poses or downward facing dog.  Other times I move from supine poses to seated forward bends.  It all depends on how the breath and the movement affects the energy flow in my body. 

I know there are lots of PWC's much worse who can't tolerate even a tiny bit of stretching. Throughout my 23 years of illness, stretching has saved me by reducing body pain, increasing circulation, reducing depression, opening up channels of energy flow.  During my worst relapses, I'd do an hour or two daily of restorative yoga, which involves putting the body in supported positions with bolsters and blankets.  When orthostatic intolerance turned into severe POTS, I did an inversion practice (headstand, shoulderstand, etc) twice a day.  Otherwise, I couldn’t function and could barely digest my food.  Yoga postures have a profound impact on the body, opening the flow of prana through the nadis and meridians.  When I do yoga, my tissues become better oxygenated and my organs function more effectively.

Lastly, Karen asked what I am running from.  My answer is that I am running to not from. But I’m not actually running.  I’ve been strolling leisurely, making my way from Ohio to California too 40 days.  I didn’t know where I was headed exactly.  I followed my inner guidance, and the suggestions of helpful friends who’ve found healthy environments in dry climates in different parts of the country.

I am looking for a place that appeals to my spirit and has clean air that my body likes to breathe.  I check the data from the EPA and other organizations if I like an area.  I look at the horizon, the visibility, the clouds.  When I find the place I’m supposed to live in, I’ll know it.

I won’t return to the part of Ohio where I got sick because of the high concentration of mold and mycotoxins in that high humidity air.  I’ll find an arid or semi-arid climate.  I won’t be in a big city, and I won’t be living near industry, but I’ll be close enough to civilization to purchase organic food and locally grown food.

I saw Dr. Janette Hope yesterday in Santa Barbara.  She confirmed my suspicion that I’m dealing with fungal infection in my sinuses even though the nasal cultures have thus far come up negative.   Because of this chronic infection (as my friend Robin explained to me from her contacts with Dr. Dennis), whenever there is moisture and whenever there are mold spores in the air, the sinuses get worse as the colony grows.  Dr/ Hope likes to treat this with anti-fungal nasal spray.

She confirmed my experience that the desert is an easier place to heal from mold illness.  Furthermore, at this stage, where I have only been away from the toxic environment for 6 weeks, I’m experiencing some unmasking, that is, reacting to things that I didn’t seem to react to before but which were toxic to me.  It’s my body’s way of making sure I get what I need to heal– clean air and clean water.

Mold and high particulates in the air we breathe all contribute to toxicity, tax the detoxification system, and in some of us, trigger a rapid inflammatory response in the brain and throughout the body.  Dr. William Rea has written many well-regarded books on this, starting the field of Environmental Medicine. He found that people who become toxic from a variety of causes have similar symptoms due to the way toxicity effects the nervous system, digestion, immune response, and cardiovascular system.  He actually started out as a thoracic surgeon and found that toxicity was at the root of the heart disease in his patients.

Similarly, Dr. Shoemaker has found that multiple biotoxins create a similar pattern of illness.  Mold, dinoflagellates, algae,and Lyme disease create an inflammatory condition that is chronic which is diagnosed by 6 or 7  biomarkers.   Once and individual has become sensitive to certain triggers (whether mold, pesticides, metals, BPA), the  inflammatory response creates a cytokine storm which is responsible for the symptoms we associate with fatigue syndromes.  Although neither Shoemaker nor Rea talk much about viruses, both acknowledge the important depletion of T regulatory cells in illness created by toxic overload.  Viruses and other infections take advantage of the weakened immune system and establish themselves. 

I know it's common to blame CFS on adrenal exhaustion (I was a practicing naturopath with graduate certification in natural endocrinology and worked all the time with salivary adrenal hormone testing).  However, in CIRS and most CFS, the adrenals are not the driving force behind the symptomology, and nearly all programs to 'fix' them fail to work because of the chronic stimulation of the inflammatory cytokine response.  While adrenal fatigue often responses to bioidentical hormones and glandulars, until the drain on the body is removed, the adrenals will remain stressed.  Hence, detox becomes a very high priority for those who wish to heal from this illness.

Detox involves supporting all organs of the body involved in detoxification (e.g. skin, liver, bowel, kidneys) as well as removing oneself from a toxic environment.  As long as the inflammatory response is still being triggered by whatever the body has become sensitized to, healing will be impeded.  Thus, getting into a healthy environment is step 2 of Shoemaker’s 12 step protocol, and a key part of Rea’s program. 


Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.