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...

Six types of ME/CFS crashes

Part of the reason that it is so incredibly difficult to control and predict ME/CFS crashes is that there are at least six different types of crashes—probably more—each with it's own cause.

A Little Background

About a year ago, I began an ambitious and naive effort to solve the mystery of my crashes.  I added three new columns to my daily health chart, one for "Activity level," one for "stress level," and one which assigned a binary numerical value (1 or 0) to whether or not the day was a work day.  In addition, I was already keeping track of my daily health rating and my "big three symptoms": flu, shortness of breath, and flank pain.  

The plan was this: after a year of tracking all three of these potential causes, I would use the spreadsheet's automatic graphing feature to create graphs showing the relationships between those three potential causes and my daily health rating (the effect).  This would, in theory, show me what caused crashes, what my crash threshold is, and any lag time between cause and crash.  

Well, after 8 months of tracking the three potential causes (ending in January), I figured I had enough data and made the graphs.  What did I find?  Nothing.  Absolutely no patterns emerged whatsoever.  Usually if you're really looking for a pattern, you can find one, even if there's no actual cause/effect relationship.  But the data defied all attempts to make sense of it.  Sometimes a particularly "active" day would be followed by a crash, but other times, not.  The same went for a particularly stressful day or a work day.

I came away from this experiment resigned to the fact that crashes (and their causes) are simply too complicated to hope to gain much, if any, control over.  Since then I've spent more time thinking about why my experiment failed, and I've come to believe that it's because there are too many different types of crashes.  As an example, the six that are most prominent in my life are:

The Dirty Half-Dozen

1.  Post Exertional Malaise:  This is the kind of crash that seems to get the most ink on ME/CFS forums and blogs.  It's where the patient surpasses his/her anaerobic threshold (AT) for too long or too often in a given day.  The crash sets in 2 to 3 days later as the body attempts to clear out the excess oxidization created by crossing the AT.  It feels exactly like the name suggests - utter and complete malaise of a type that only a PWME can understand.  Then your AT becomes even lower.  Suddenly your heart rate spikes with even the mildest of efforts.  People sometimes try to avoid these crashes by wearing a heart rate monitor.

2.  PEM - the other kind:  Crashing doesn't always require crossing one's AT, does it?  I wish it were that simple.  For those of us who are lucky enough to be able to stand and walk without surpassing our AT, we know that even if we stay under our AT and don't do anything that raises our heart rate too much, we can still crash from simply standing too long, or walking too long.  For those with bad POTS symptoms, even sitting upright for too long will do it.  And for others, mental strain will do it as well.  The feeling of this type of crash is similar to the first type of PEM - utter malaise.

3.  Bugs:  We encounter a whole slew of viruses and bacteria every single day.  People with healthy immune systems fight off the vast majority of these invaders before the person ever feels the slightest symptom.  For us, it's different.  In the bodies of PWMEs, otherwise weak pathogens find a place where they can hang out for a while and spar with our weak T-cells and B-cells.  I don't know if it's the pathogens themselves or the immune system's reaction that makes us feel so awful, but I recognize this type of crash by its symptoms.  These crashes come with sniffles and coughs, sore throats, respiratory issues and other traditional cough and cold symptoms.  

4.  Herx.  Ah, the mysterious and possibly mythical Herxheimer reaction, also known as the "die off" effect.  Supposedly this means that whatever medicine or supplement regimen you embarked on is working.  The problem is, few if any can really distinguish between a Herx reaction and a plain ol' bad reaction.  Some say they can tell the difference, but there's no consensus on exactly what that feels like.  The only thing I know for sure about Herx is that, if you're feeling blue about a crash, you can often convince yourself that it is actually a good sign.  This is almost never the case, but it feels good to think it anyway.

5.   Adverse reaction:  Different from Herx, this is when you simply didn't react well to a new treatment.  This can feel like anything, it just depends on the treatment and your body chemistry.  Maybe you added a new supplement that started a reaction which stripped your body of another critical nutrient.  If you're lucky, you can trace it back to a supplement you started the day before.  But sometimes it can take months for your body's reserves of a particular nutrient to be depleted, and good luck tracing that back to its origin.  I hope you like pouring through 86 page threads on Phoenix Rising, looking for a few nuggets of scientific truth among mountains of speculation.  About half the new treatments I try end this way.  For some people I know, it's more like 100%.   

6.  New symptom:  Sometimes a new symptom just hits you out of the clear blue sky.  You have no idea where it came from or why it chose that particular day to reveal itself.  You know it's somehow related to ME/CFS because you never suffered such random attacks before ME/CFS. But you don't have the faintest clue how it fits into 'the big scheme of things.'  You figure you won't even bother telling your doctor about this one because she won't have the faintest clue either.  Sometimes it goes away in a few days, as mysteriously as it appeared.  Sometimes it becomes a new recurring symptom and now it's not a crash anymore.  Congratulations, it's your new baseline.  

I'm sure that there are other types of crashes that I am forgetting, or that I haven't experienced...yet.  I know others have spoken about stressful life events leading to crashes.  I can't speak to that yet, but some day I just might.  Hopefully not.

My Conclusion

Of these six types of crashes, the only one that I feel I have the slightest modicum of control over is the first one: traditional post exertional malaise.  To a lesser extent, I may have some control over 2 and 5, but I'm unwilling to stop tinkering with treatments and I'm not going to shut down all activity unless/until I ever get to the point where I'm housebound.

I'm usually pretty good at managing my lifestyle and avoiding PEM crashes, yet I still crash all the time.  It's because there are still 5 other types of crashes waiting to come up on the ME/CFS wheel of fortune.  For me, number 3 ("Bugs") is by far the most common type of crash I experience.  So, like most of us, I do the best I can to minimize my chances of crashing while still accepting that most crashes are beyond my control.  And somewhere in the margin are a handful of #1 & #2 crashes to whom I say: bring it on.  It's worth it. 

Trying to rule out Lyme when you have ME/CFS: not easy!

When you have ME/CFS, from time to time, people will suggest that you might actually have Lyme disease.  The symptoms of Lyme are virtually identical to ME/CFS.  In fact, Dr. Paul Cheney apparently believes that ME/CFS and borrelia infection (the bacteria that causes Lyme)  are "exactly the same" illness.  He states that borellia just happens to be the trigger of ME/CFS's cascade of symptoms for some, while for others, the trigger is some other pathogen.  Basically, there are different routes to the same destination, borellia being just one of many.  (Again, this is an oversimplified paraphrasing. The full comment can be heard here at 13:00 to 16:32)

If that's the case, does it matter if you have Lyme of ME/CFS?  Yes, actually it does matter because your treatment options will differ if borellia is at the root of your illness.  In that case, long courses of antibiotics are usually indicated.  But if you don't have borellia, or some other chronic bacterial infection, most doctors will tell you to stay away from long courses of antibiotics.  Antibiotics will destroy your "good gut bacteria", potentially weakening your immune system, so it's best not to use them unless necessary.

So it becomes pretty important to know if you have Lyme or not.  But of course the problem is that Lyme tests are notoriously inaccurate.  My results to a Western Blot test were negative, but if you believe some, that means virtually nothing.  People will tell you that you have to find a really good LLMD (Lyme literate medical doctor) for a diagnosis based on a clinical evaluation.  I'm extremely skeptical of this.

Without a specific recommendation from someone I trust, I can only search the internet for so-called "Lyme experts" in my area.  There are a few.  But when I look carefully about what other patients are writing about these doctors, it seems that they basically diagnose anyone with a pulse with Lyme disease.  I don't want some B.S. diagnosis just for the sake of a diagnoses.  Call me crazy, but I want to know whether I actually have borellia in my system or not.  You wouldn't think it would be too difficult to get an answer, but apparently borrellia is just that tricky.

In the absence of an easy answer, I had recently decided to ignore the Lyme issue for now while I worked on other issues (like methylation).  But, as luck would have it, my friends at HealClick recently posted this great piece on more advanced Lyme screening options.  It really is worth the read.

I do wonder how difficult it will be to get one or more of these tests ordered, however.  I will look into it at upcoming doctor appointments and update this post later.

Gallery of Dead Possessions

Being newly diagnosed (within the last two years) I find that reminders of my past life are everywhere. It's difficult to open a door, or a cabinet, or a closet in my house without seeing something that reminds me of my former healthy lifestyle.  These objects—these remiders—are everywhere.  I'd imagine that other newly diagnosed patients deal with the same issues.  What are we supposed to do with this stuff?  Will we ever use any of it again?

I decided to start liquidating some of it—selling it on Craig's List.  Not all of it.  Just some. I figure, not only will this help me move on in my life, but it should emancipate a nice chunk of cash that's currently locked up in useless possessions.  

So this post is a sort of tribute to some of my favorite old possessions. (Man, that sounds corny).  I'll miss you, but I have to move on.  

*Incidentally, these pictures served two purposes.  If they look like they're arranged to be appealing to a Craig's List buyer, you're right!

This is the world's greatest beer pong table. We had some good times together. 

In surfing, your board collection is called a "quiver."  This is a small-ish quiver -- serious surfers have 6-10 boards.  You want to have a board for every mood and every sea condition.  I'll probably keep the longboard in case I improve well enough to do some lazy surfing in the future.  If not, my daughter can use it as a starter board some day.  The others must go.

Ahh, the hot tub.  Sadly, they say that PWMEs should avoid chlorinated water because the chlorine absorbs through our skin and our defective detoxification mechanisms can't deal with it effectively.  We'll see.  I might still use it occasionally.

Here's a little wetsuit drying rack I built out of PVC pipe.  It will still get some use from my wife's wetsuits, but  not nearly as much.

Mrs. Calvin doesn't drink much hard alcohol, so this stuff just gathers dust. 

Dry foods.  It's mostly carbs (except the nuts).

My work bench, my baby.  I shouldn't say these tools are completely useless to me now -- I still use them sometimes, just not nearly as often.

Three wetsuits: one for Winter, one for Spring & Fall, and one for Summer.  I can't tell you how much I miss suiting up.  It's like wearing a full-body compression sock: you're heart doesn't have to work nearly as hard to circulate blood. It's pretty relaxing

Sports equipment.  I'll probably keep the golf clubs - golf sounds like a reasonable possibility in the future.  

Snowboard gear.  It kills me that I might not be able to teach my daughter how to ski or snowboard.  I had always looked forward to that. 

This is a roof rack that allows you to strap surfboards to your car. 

Nintendo Wii.  Believe it or not, most of these games will cause me to crash if I play them.  

Backpacking gear.  Drive-in camping is still doable, but backpacking and hiking is out of the question right now.

Power tools.  I feel good just looking at these things.

Never used 'em much anyway.  I won't shed any tears over this stuff.

Actually, I might use these weights again some day, but I'm sticking to Tai Chi for now

Yerba Mate' accouterments.  Yerba mate' is a type of loose leaf, high caffeine tea from the lower half of South America.   You're supposed to drink it out of these gourds, as the natural flavor of the gourds leeches into the tea.  The metal straws (called bombillas) filter the tea leaves.  Unfortunately, the high caffeine content doesn't agree with me now.  It also supposedly robs one of B vitamins, which is the last thing I need.

Yoga mat.  I can still do some light yoga, but not enough to attend classes (which is where I used this mat).

Running shoes. Look at them--they're begging me to take them out for a run.  Sorry guys.

Breathalyzer.  People love these things at parties, I'm not kidding.  Apparently, folks like to see who is the drunkest at the party.  After it left my hands at a party, it was often hard to get back. 

Oh Bev Mo.  You're like the Toy'R'Us for adults.  I miss you.

TideMaster watch. This sucker tells you what the tide is at any given moment at thousands of beaches across the world.  It's based on the beaches' latitude and the position of the moon.

And finally, here's a small sampling of the clothes that don't fit any longer due to weight loss.  Some I've had altered, others are going into storage in case I gain the weight back.  

OK, that felt good to unburden myself.  Thank you.  In the future, I hope to do a more positive post about all of the items that have become more useful to me with ME/CFS.  I seem to have shifted my focus to more creative pursuits, which comes with a whole different array of fun supplies.

The 5 Stages of Dealing with ME/CFS

I was having lunch with a fellow patient yesterday and we started talking about how many patients  pass through the same stages of dealing with ME/CFS.  This is evident when you talk to other patients online or in person.  We realized that very little changes over time in the ME/CFS community.  Patients who get ill today will basically follow the same path, trying the same treatments (often in the same order) as patients who first became ill 5 or 10 years ago.  Here's my attempt to define the stages of dealing with ME/CFS.

A caveat: there will be plenty of exceptions, as we all have different etiologies, levels of functionality, economic means, and social support.  But in my experience through interacting with hundreds of other patients online, this is generally how it goes.  Admittedly, this might be shaded toward my personal experience, although I've tried to eliminate personal bias.

Also, my sample must be biased toward online patients.  There is an entire subgroup of patients who never do any research and simply trust their doctors implicitly for diagnosis and treatment.  They are not represented here.

Keep in mind, patients are likely to drop out of this progression at any stage if they improve to about 90% or better.

Stage 1 - Pre-Diagnosis

This stage can last anywhere from 4 months to 10 years or more.  Beginning around the turn of the millennium  with the advent of the internet and the increasing acceptance of the ME/CFS diagnosis, it became more common for patients to receive an early diagnosis, i.e. within a year or two of onset.

This is often a time of fear and anxiety, as the lack of a diagnosis causes us to wonder endlessly about the possible causes of our illness.  Usually we visit somewhere between 10 to 30 doctors before receiving an ME/CFS diagnosis (rarely less than 10).  Often the ME/CFS diagnosis is guided by our own "process of elimination," having ruled out nearly every other possible cause of our symptoms before finally seeking out a doctor knowledgeable about ME/CFS.

Stage 2 - Heavy Research & Networking

After diagnosis, many patients begin a period of heavy research, if their cognitive abilities still allow.  Sometimes "brain fog" prevents this.  For those who can manage it, we often dive into ME/CFS literature with the goal of learning everything we can about this illness.  We start with internet sources, including message boards, and sometimes even branch into medical journals and books.  We often begin networking with other patients during this stage, through internet and in-person support groups.

Almost inevitably, the heavy research begins to slow down.  The term "burn out" is often used by patients reflecting on Stage 2.  For others, they don't so much burn out as reach the end of the line.  At some point, one begins stumbling across the same literature again and again and becomes satisfied that they're more-or-less familiar with the general ME/CFS landscape.  This is not to say we feel we've read "everything"—that would be impossible—but we have a working knowledge of most of the major theories of etiology and treatment.

Also during this stage, we usually begin exploring treatments, but maybe with only one or two supplements in combination with lifestyle changes (less work, diet changes).  Maybe a single prescription drug is tried.  Some of us overestimate our chances of a full and quick recovery.  If a patient has any inclination toward activism, it usually appears (and peaks) in this stage.

Stage 3 - Exploring a Multitude of Treatments

There's significant overlap between Stages 2 and 3—Stage 3 usually begins somewhere in the middle of Stage 2.  But eventually many patients find themselves on dozens of treatments (supplements and prescriptions), either at the same time, or in a series of experiments.  Some of us look for the right combination of treatments, while others look for the best single treatment.  This stage is guided by a mixture of doctor advice and ME/CFS community advice.  The research usually doesn't end during this stage (or any other stage) but it slows significantly.  We will still fully explore any new research breakthroughs or "hot button issues" making the rounds on message boards, but we don't actively seek out new information as aggressively as in Stage 2.

There's a wide time frame for this Stage—perhaps 6 months to 10 years or more.

Stage 4 - Settling Down

At some point, we become satisfied that we have explored most treatments that are reasonably available to us (given economic and geographical limitations), and we've ruled out many treatments that didn't help or made us worse.  We settle on one to three treatments that are most effective plus key lifestyle changes.

At this stage, some patients are more jaded and less hopeful for a full recovery.  The goal here is just  to regain some quality of life.  Hope for a full recovery at this stage often rests in the prospect of some future game-changing medical breakthrough.  We study news of ongoing and burgeoning research more closely than past research results.

(Stage 5 - Relapse)

If a patient suffers a major relapse or a sudden deterioration, sometimes they repeat Stages 2 through 4 in an abbreviated way.

                                                            _____________________

If you are new to ME/CFS and you're reading this, you might be wondering, "can't I  skip ahead to Stage 4?"  The answer is, no.  My advice to you would be to go through the these stages like the rest of us did.  If you don't, you'll always be wondering if you might have found something that worked for you.  Good luck and may you never reach the next stage.

[Update 12/31/12:  I submitted a draft of this post for feedback in the Members section of Phoenix Rising.  Many users there offered interesting comments, additions and criticisms.  The discussion is worth reading if you are a PR member.]