Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, May 28, 2015

What I learned from a vacation

In that wake of a recent vacation I took to Croatia, I have to rethink much of what I thought I knew about my illness.  Since the beginning of April, I have been in a crash that was severe enough that I wondered if it should actually be called a relapse.

The day of the vacation arrived and I was feeling about as ill as I've felt at any point the last two years or so.  I was really beginning to regret that I had ever thought I could manage this vacation.  I was lying on a bench at Los Angeles airport with this weird brain-foggy headache that had become my worst symptom in the prior two weeks. It comes with painful knots in my shoulders and sometimes swollen glands in my neck.  It's a new type of headache that I hadn't previously experienced.  I wondered how I would manage an 11 hour flight, a 5 hour layover in Germany, and another two hour flight.  Then a cab ride.  Then a walk up three flights of stairs to a rented apartment in Dubrovnik.

I figured if I could just manage to get to that apartment, then I could repose for an entire week.  I rationalized that, even if I was never able to leave the apartment, at least I would have a view of the Adriatic and fresh salty breezes.  At least I'd have a new stamp on my passport.

My wife had some migraine medicine and she suggested I try it.  I had nothing to lose so I popped the pill.  At around that time, I noticed that the airport had a day-spa right there in the terminal.  There was plenty of time before the flight was supposed to board, so I decided to buy a half-hour neck and shoulder massage by a professional masseuse.

I still don't know if it was the massage or the pill, but by the end of that massage session, I was feeling 85 to 90% better.  I couldn't believe it.  My symptoms continued to improve on the flight to Frankfurt.  By the time I landed in Frankfurt, I actually felt well enough to leave the airport during the layover and get coffee and lunch in the city's center.

Once in Croatia, I was like a person just out of a coma.  Sure, on a few days, I felt the brain-fog/headache, but it was barely noticeable--a background inconvenience.  As I do sometimes on special occasions, I forgot about my diet for the week and ate and drank whatever I wanted. Croissants.  French fries. Baguettes.  Cappuccinos. Gelato.  Beer!  Notwithstanding the time difference and jet lag, I felt more or less like a normal person for that week.  Perhaps strangest of all, the white film that's usually on the back half of my tongue (indicative of candida) was mostly gone all week, despite my broken diet.

So I figured this vacation happened to correspond with a turning point in my crash.  Maybe it was a coincidence, I thought.

I flew back on Sunday, still feeling good.  Had Monday off of work.  Still felt great.  Tuesday morning I wake for work and that weird headache is back just a little.  It's barely noticeable when I first wake.  By the time I get in the car to drive to work, it's raging again.  I think, "what the hell is going on here?"

The symptoms have persisted on and off (mostly on) since Monday.

Most ME/CFS patients will read this and probably think: "There you go. You've proven that your ME/CFS has an environmental trigger.  You're obviously reacting to something in your home, car, or work."

I suppose that may be true, but it doesn't explain why so many other past experiments with changing my environment haven't made any difference, nor why I felt so well (relatively) in my home/work environments over the past year, up until April.

Another possibility is that the symptoms are caused by a supplement.  I did leave a few of my supplements behind to save space in packing.  I'll experiment more with this, but I'm doubtful.

Still another possibility (and believe me I hate to acknowledge that this is even possible) is that stress associated with work is somehow triggering my symptoms.  This still wouldn't explain why my immune system is so screwed up in blood tests, but I suppose it's possible stress could exacerbate immune dysfunction.   My reaction to this possibility is: it doesn't make sense because I'm fairly laid back and don't think of myself as a stressed-out person.  But I suppose stress could be affecting me on a level I'm not aware of.

Bottom line: this vacation has given me a lot to  think about and evaluate with my doctor.  I never expected to suddenly feel great on the vacation and I never expected to suddenly regress when I returned.  This certainly seems to be a strong clue, but I don't yet know what it means....

Excellent Article on Anti-Inflammatory Diet

"If the balance shifts by consuming excessive omega-6, the cell membrane produces chemicals called cytokines that directly cause inflammation."
Every once in a while, I find that I need to remind myself of why I've adopted an anti-inflammatory diet.  Most of the time, I don't find it difficult to stick to my diet, but sometimes I'll allow myself a little taste of a sugary dessert or bread.  When I do, sometimes it's very difficult stay on the wagon--to not go crazy and bury my face in a pile of confections.  Articles like this are perfect reminders of why I need to stay on that wagon.

Friday, May 15, 2015

Why it's so hard to tell what's causing an ME/CFS crash

I have a very hard time determining what's causing a crash.  I often go back and forth between two possibilities.  (1) One is that I caught a simple cold virus or flu virus and my weakened immune system is having a difficult time clearing it.  (2) The other possibility is that the crash is more of a normal ME/CFS cycle, where existing chronic viral infections (opportunistic infections that take advantage of a compromised immune system, like EBV, HHV6, CMV, enteroviruses, etc.) suddenly "rally." Sometimes the "rally" can be brought on by stress or overexertion or anything that can further weaken the immune system.

I'm not excluding other possible causes of crashes, but those two seem most likely in my case.

A normal person who doesn't have ME/CFS might think, "we all know what a cold or flu virus feels like.  Can't you tell if you feel like you have a cold or a flu?"  The answer is "no" because one's immune system changes when he/she contracts ME/CFS.  It reacts differently to pathogens -- even ordinary cold and flu viruses. This change is often described as an imbalance between two sides of the immune system: Th1 and Th2.  The famous ME/CFS doctor Cheney describes the problem (as transcribed by one of Dr. Cheney's patients, with permission):

Researchers have demonstrated that most CFIDS patients end up stuck in Th2 mode. This has several consequences. When the Th2 system activates, it blocks the Th1 system. This suppresses the Th1 weapons, particularly NK function. Accordingly, there is also an increase in the Th2 weapons - the white cells and antibodies. Most notable is increased antibody production. Dr. Cheney said that if you measure antibodies to anything a CFIDS patient has ever been exposed to, they will very likely be elevated.... 
Cheney notes that other problems ensue. Patients get into trouble on both sides: they overreact to things on the right side and under-react to those on the left. When they are Th2 activated, they no longer have the defense mechanisms to keep dormant all the things they caught in the past. They cannot suppress or control them anymore, and the EBV, chlamydia pneumonia, CMV, etc. reactivate. The yeast also begins to appear. 
The only defense against being eaten alive at this point is RNase L....RNase-L cannot kill any of these things. It only stops them from reproducing. According to Cheney, "It's a line in the sand saying 'No more replication', and it waits for Th1 to come and kill them. But Th1 never comes. RNase L sits there and grinds away, possibly going up and down as the pathogens activate and reactivate. But they never get wiped out. RNase L holds the line, waiting for the cavalry that never arrives.

The Th1 side of the immune system is the side of the immune system responsible for, among other things, attacking and clearing pathogens that are "intra-cellular"--that live and replicate inside human cells. The Th1 immune cells know how to find and destroy viruses that hide inside cells.  Even ordinary cold and flu viruses fall into the this category of intra-cellular that replicate inside cells, meaning a person with a Th2 dominant immune system would have a harder time clearing these viruses.

When a Th2 dominant PWME contracts a cold or flu virus, the virus still triggers the immune system. But it triggers the immune system in a new and different way.  Other aspects of the immune system try to compensate for the deficient Th1 response.  Th2 is turned on (further) when Th1 should be turned on.  So when a Th2 dominant ME/CFS patient contracts a new virus, we don't feel the same as when a normal person encounters a new virus.  Our immune systems becomes triggered, but in all the wrong ways.  These "wrong ways" make us feel horrible - but not "horrible" in the same way a normal person feels when they get a cold or flu.  It's much different.  And it lasts longer.  It comes with neuorologial symptoms like brain fog, muscle twitches, numbness, and a long list of other oddball symptoms.

Because of this, I often can't distinguish between the two types of crashes I described in my first paragraph.  They essentially feel the same -- with the possible exception that a cold or flu- triggered crash might bring more typical symptoms like sore throat, and runny nose, in addition to the "oddball" symptoms.  On the other hand, I can't rule out that a "rally" type crash might also bring on those symptoms.

Sometimes I wonder if all of the crashes I've ever had fall into only one of the two categories.  I have this pet theory that I wonder about sometimes.  Maybe all of the ME/CFS crashes that I've ever had are due to me encountering run-of-the-mill every-day viruses that my weak immune system struggles to neutralize. We all (healthy and sick people) people encounter viruses nearly every day, but a healthy person's immune systems manages to clear most of these viruses without the person every feeling symptomatic. It's only the occasional, more robust virus that makes the person feel symptomatic.  It's possible that having ME/CFS--at least my version of it--is simply a state of having my immune system constantly triggered in a defective way.

(For many of my ME/CFS friends who react to mold or other environmental triggers, it's essentially the same thing except the catalyst that triggers their immune systems is different.  Rather than being viral, it's environmental.)

The only way I could test this theory would be spend time in a hermetically sealed bubble like the famous Seinfeld "bubble boy."  My suspicion is that if I ever spent time in an environment free of pathogen exposure, I'd feel great.  Since that's obviously not realistic, I'll just have to wonder...

Friday, May 1, 2015

April - my worse month in two years

I just calculated my daily health chart average for the month of April and it was my lowest daily average for any month since May, 2013.  The difference between April's average and all other averages of the past 12 months was enormous.

I'm still trying to determine the cause of this crash: is it a bug or could the stress of a recent arbitration have weakened by immune system?  Or a combination of both?  

I continue to have symptoms of a regular cold, like a cough and nasal congestion, but it's difficult to tell if that's the root of the crash or more symptoms of it.  Since coming down with ME/CFS, my immune system reacts differently to colds.  In my pre-ME days, cold symptoms were limited to...the usual cold symptoms.  They tended to be localized, i.e. in my sinuses or lungs.  But now, a cold seems to trigger my dysfunctional immune system in funny ways.  Inflammation runs rampant.  I get brain fog, achy kidneys, very swollen lymph nodes, sleep disturbances, and many other problems. That's why, after your system goes out of whack with ME/CFS, it's very difficult to determine what's going on when you're crashing.

I'm holding out hope that this is just a particularly bad cold, and not a more significant set back.