Avoiding Triggers and mast cells- anecdotal experience

I’ve decided to split my post on mast cells into two posts- one focused on my anecdotal experience with a little science thrown on, and one focused on scientific evidence with a little anecdote thrown in. This post is going to focus on my experience.

The last few weeks I’ve been hiking about every other day in the dry Montana mountains.  My hikes have usually been somewhere between 4 and 8 miles long, with about 800-1500 feet in elevation change and a base typically around 6000 ft.  Compared to my friends averaging 20 miles a day hiking the Pacific Crest Trail this is nothing, but compared to most people with CFS each hike might as well be an ultra-marathon.

Most importantly, when I complete the hike I often am more energized than when I started out, although my calves are usually not as excited.  If I am experiencing any PEM, it is subtle.

But when I go back indoors I slowly feel my energy ebbing away.  No matter how much caffeine I drink, I can’t focus my eyes or write a sentence.  I have even tried cheating with adderall, but had no energy boost.

What’s the explanation?  My current theory is that my mast cells are over-reactive, and I am experiencing brain inflammation when I am indoors.  I think mold/mycotoxins are likely my main trigger, but suspect there are others.  Mast cells did not likely evolve in order to render their hosts disabled at the slighest hint of a trigger, so mast cell degranulation is not the “root” of my illness, but I think it may be the mechanism causing my most debilitating symptoms.

I am still not 100% when I am outdoors on my hikes- my concentration is limited compared to before I got sick, and my shortness of breath is still present (although interestingly doesn’t worsen when doing physical activity.)  But my vision is sharp and I get to remember what it was like to feel energetic.

When I lived in San Francisco I felt maybe a 10% boost from being outdoors, but nothing compared to when I am in the dry Montana climate.  The mast cell hypothesis can also potentially help explain my experience in Joshua Tree.

I want to try to anticipate a couple of obvious questions people may have about my experience:

Um, are you sure you have ME/CFS?  Maybe you just have mold illness/MCAS/depression/[insert random disease]? 
I think most people would make this leap immediately, but there are reasons to think otherwise:

• A lot of people with CFS hate the current diagnosis criteria.  They are vague and could easily lead to people with other diseases, such as depression, being diagnosed with CFS. So the goal is to get to a diagnostic test.  We are not there yet, but there are several promising tests, and I’ve had several of them done.




• My NK cell function was 7 LU as tested by Stanford.  Dr Peterson has stated that NK cell function is low in some other illnesses, but not as low as it is in CFS.  This reflects the findings in a lot of CFS research studies.  There are people with CFS who have a 1 or 2 for NK cell function, but a single-digit value is still considered to be really bad.


• In a recent Stanford research study, my Anaerobic Threshold was found to be 93 on day 1 and my VO at AT was 7.6. These are even worse than the average well-characterized CFS patient and the average patient with heart disease.  Most people with these levels would have trouble walking, let alone hiking, and the results can’t be faked.


• I don’t even fit Fukuda anymore, yet fit the CCC, which is usually more accepted by patients.  I have POTS as diagnosed by Vanderbilt and it would be too painful to reveal the results of my neuro-psych test in a research study.




• There aren’t any other diagnoses that fit my experience that are accepted by mainstream medicine.  Ask your average PCP about mold illness and you will likely get a blank stare or a statement about there being no known illness causes by mold other than allergies.  I think Shoemaker is onto something real, but there isn’t much published research corroborating his observations.  MCAS is still being defined, and the official definition in UpToDate (many doctors’ bible) does not cover all the CFS symptoms and does not cover persistent symptoms.  And several mast-cell researchers consider mast cells to be potentially behind many of the symptoms in CFS and fibromyalgia, but not part of a competing diagnosis.

Even if you have “CFS”, are you simply a member of a small subset that is affected so strongly by the environment?
This is certainly possible. I had an insidious onset with primarily digestive and neurological systems rather than viral symptoms. I do know several other people who feel much better in the desert/mountains who had acute viral onsets, but I don’t know if “avoiding triggers” will work for everyone or even most people. But a lot of people on PR report doing better away from allergens and away from mold and they seem to be a varied lot in terms of symptoms and onset.  Once CFS is better understood we could turn out to be a subset; sadly there doesn’t seem to be much research that will help clarify this as far as I can tell.  I will go more in detail on this topic in my next post.

For various reasons I am not going to go into what my version of “trigger avoidance” entails right now, so this isn’t at all a how-to.   I just want to share my experience with the occasional passer-by.  If people have questions please feel free to ask them in the comments or email me directly.