Hand and foot pain

The pain in my hands and fingers that I wrote about in my last post continues to trouble me.  I am becoming less and less convinced the pain is due to re-activated Shingles.  For one, the pain has migrated to my left hand too.  From what I understand, Shingles will never cross over to the other side of the body--it always stays on one side.  Also, I never did develop a rash this time, and the problem doesn't seem to be improving with time.

A couple weeks ago, I started feeling the same pain that I have in my fingers in my toes too.  And even when my toes aren't hurting, both of my feet feel twitchy.  It's a difficult sensation to describe because my feet and toes never actually twitch.  They simply feel twitchy.  I don't know if there's a word for that sensation, but it obviously has something to do with the nerves.

At the same time, I have also been feeling that pain and twitchy-ness in my throat.  When it's particularly bad, it also feels like there is a lump in my throat and it feels like it's difficult to swallow.

The one bright spot is that the headaches and brain fog that accompanies this recent cluster of symptoms at the onset has disappeared.  That only lasted the first week or so, which is a huge relief.

Because of this new cluster of symptoms, I recently made an appointment with a neurologist.  (She is booked until late June, so I have to wait a little while.)  I have never before consulted a neurologist before, but I think it's time for some testing.  Other ME patient friends have warned me not to expect much.  I do understand that the neurologist may simply run a couple basic tests and that these basic tests aren't likely to result in useful information.  I understand that's a possible, maybe even likely, outcome but I need to try something.  

Shingles update

I've now had shingles for 16 days (if you count from the first day the pain started, even though there was no visible rash until 3 days later.)  After the visible rash appeared, prompting me to see my doctor for a diagnosis, and to begin taking Valacylovir (500mg 3x/day for 7 days) and L-Lysine, the rash continued to worsen for another 3 or 4 days.  The rash grew from initial spotty patches on the right side of my abdomen until it eventually formed a more-or-less complete band stretching from my navel around the right side of my torso, to my spine.

I would have never thought it possible that the mere touch of clothing to the skin could be painful, but that's exactly what happened.  Even the gentle touch of cotton shirts has become fairly painful. On the other hand, the pain isn't so excruciating that I can't focus on other things if needed.  Most of the time, I can ignore the pain and focus on other tasks.  But when my mind is unoccupied, and especially when I'm walking around (thus creating more friction between my shirt and my abdomen) the pain becomes fairly intense.

As of today, the rash is slowly disappearing but the pain continues to wax an wane.  It is the "waxing" part that concerns me slightly.  The pain had been trending less severe along with the fading rash until yesterday, when it started to become more painful again.  Today again, the pain is as intense as it ever was.  So I will continue to evaluate my options and perhaps seek more Valacylovir from my doctor.

Why did this happen?  Other than the obvious--that I have a weakened immune system due to ME—this happened because I "pushed" myself too hard.

I felt the first symptoms on a Sunday.  The prior Thursday, I'd experienced a very poor night of sleep. I was already in the midst of period of increased stress in my life.  [Trigger warning for severe ME patients]  Then I did a stupid thing: I went to a concert on Friday night, as if I was a normal, healthy person.  I even drank a beer.  Then, after the concert, I had another poor night of sleep because of the stimulation of the concert, its late ending, and the alcohol.  Then, the next day, apparently having completely lost my mind, I attempted to go to a museum with some friends.  This was far more than my ME-depleted system could handle. By Sunday I knew I had overdone it and there would be a severe price to pay.  I felt like hell.

I was correct that there was going to be a price to pay, but I couldn't have predicted that it would take the form of shingles.  But sure enough, that Sunday is when I felt the first strange symptoms as I noticed that my clothing hurt.

Lesson learned...

For anyone interested in further reading, here are two articles regarding possible connections between ME and the VZV virus (the shingles / chicken pox virus.)

http://phoenixrising.me/archives/5806

http://sacfs.asn.au/news/2014/06/06_03_link_between_shingles_and_cfs.htm

Final note:  Is it me, or is shingles a particularly nasty word?  It evokes all sorts of disgusting images in my head.  It's as if roofing tiles are going to grow out of my skin.  (*shudders*)  Ew.  

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...

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.

Possible relapse - very frustrating

I keep a daily rating of my overall health, then I tabulate an average at the end of each month to track my progress.  March, 2015, was my best health month since I first became ill in the Summer of 2011. Even before I tabulated the average, I could tell March was going to be a blockbuster. I only had one or two days in the month when I didn't feel like I could accomplish about 90% of the things I needed to do (work, errands, child care) and maybe 80% of the things I wanted to do. Short of any cardiovascular exercise (which still induces a crash), I was, if not exactly "living large," living upper-medium.  

As March continued, I started wondering if I should consider myself "in remission."  I wasn't close to my pre-ME/CFS self, but I was wondering if I should nonetheless consider myself more-or-less in the category of "regular people."  I still regularly experienced symptoms like "air-hunger," swollen lymph nodes, and random inflammation, usually in the area of my kidneys and pelvic floor, and many others.  But over time, these symptoms had reduced in severity to the point where I felt I could live with them without too great of a reduction in quality of life. March was the pinnacle of this.

So naturally I went nuts during the month of March, despite my better judgement.  I started drinking coffee on a daily basis and running around doing errand after errand like I'd never heard of ME/CFS.  "What's this Myalgic Whatchamacallit you speak of?"  I let myself work later and later hours.  I even worked a weekend, despite reservations in the back of my mind.  It's easy to say now, "I should have known better not to push it so hard." But then again, as I improve, how will I know what my new limits are unless I test them?  Plus, who has the discipline not to fall back into old habits, i.e., being a regular person?  If you do, you're stronger-willed than me.  

On Friday, April 2, body-wide inflammation swept over me and I knew it was something significant.  It's only been 5 and a half days since then, so maybe it's too early to call it a relapse.  Sunday was a so-so day.  And even in my current state, I'm more functional than many patients.  It's nonetheless disappointing.  I keep holding out hope that this is just a "bug" (sick on sick), but it doesn't feel like it.  Unlike with a typical viral infection, the symptoms aren't localized to any particular area of my body.  They are everywhere: brain fog, swollen nodes, shortness of breath, kidneys inflamed, gums inflamed, cold hands and feet, weakness, pain in pelvic floor muscles.

Another possible explanation for this downturn is that I recently started experimenting with eliminating certain supplements and prescriptions from my daily routine.  So far I've cut out OraKidney, potassium, PS Complex, Valacyclovir, and B-complex With Metafolin.  I also cut Vitamin D-3 down from 10,000 IU per day to 5,000.  I cut back on Testosterone injections too because I thought it might be contributing to pain in my pelvic floor muscles.  Just to be safe, I'm going to start going back on those supplements until I get this figured out.  

It will be interesting to see how this one plays out...

In the meantime, I got a bunch of test results back from my new doctor.  I owe this blog an update on those results too...coming soon.  Short version: CD57 (a type of Natural Killer Cells) is pathetically low.

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. 

Is the Rifampin working?

I wrote in an earlier post that my ME/CFS specialist, Dr. C, recommended a drug called Rifampin that has been shown to "correct" the flagging immune systems of some PWMEs.  Dr. C prescribes a one week course of the drug.  When it works, the patient usually develops a flu about one to two weeks after starting the drug (so, sometime after finishing it).   I started Rifampin two weeks from yesterday.

I woke this morning feeling crashed and flu-ish.  My wife asked, "could it be from that medicine?"  To be honest, I had forgotten about the Rifampin when nothing happened after about 10 days.  Just another failed experiment, I figured.  Plus, it seems like months ago that I took Rifampin.  I had to check and recheck my calendar to verify that it wasn't.

I dragged myself in to work today and, as I started to feel worse and worse, I gained more and more hope that this could be it.  This could be the flu that resets my immune system.  I'm perspiring on a cold day!  I'm achy all over!  I can barely sit up in my desk chair!  Sniffles!  Surely I have a fever.  Hallelujah!

...until I took my temperature with a spare thermometer from my desk drawer.  97.7.

I suppose that this "flu" that Dr. C speaks of might not require a fever, per se, but somehow I doubt it.  Probably this is just another crash...the worst in months.

As of yesterday, I was scheduled to examine witnesses in two all-day depositions today and tomorrow, but thankfully they were postponed late yesterday afternoon.  I would have been in a "world of hurt" if I were trying to take a deposition today.  Now, I just have to hold on for the next two hours, pick up my daughter from daycare, drive home and get in bed.

Digestive enzymes = crash?

Over the last couple of weeks, I have been dutifully taking various Basic Support supplements from Yasko's protocol, adding a new one each 3 or 4 days.  So far, I've added pyconegol, General Inflammatory RNA support, Adenosyl, and the general multivitamin called Neurological Health Formula.  Everything has been going well...until today.

I added digestive enzymes this morning, taking only 1 pill (2 are recommended).  Within a half hour it was clear that I was spiraling down into a very bad crash with nausea, brain fog, and neuro symptoms in the legs and arms (numbness and incoordination).  The crash has lasted all day and shown no signs of letting up.  In fact, I'm struggling to type this because of the neuro symptoms.

Ordinarily, I would have left work and gone home but I have a deadline this week and simply couldn't miss work today.  Frankly, it was miserable.  Trying to concentrate when my brain is fighting against me is not fun.  Worse is trying to act normal with my cooworkers when they are attempting to discuss complicated topics with me.  I put on my best business face and did the best I could.  I'm not sure if they noticed anything was wrong, but I wouldn't be surprised if they did.  At times, it was clear that I wasn't making much sense.  

Hopefully if I stop taking the digestive enzymes, these symptoms will disappear quickly.  But of course, I can never be 100% certain of the cause of any crash.  There's always a few other suspects hanging around, creating doubt.  Could this be delayed effect of the adenosyl, i.e. hypokalemia? Or just a crash from the hectic activity of the last few days?

I'd be interested in hearing from anyone else who had a similar experience with digestive enzymes.  I'm not even sure exactly why Dr. Yasko recommends them, so I'll have to research that issue as well.

Thanks for reading today.  

What a week! (Cold weather and CFS - a personal update)

It's been one of those weeks where I look back and think, "Patrick, you're pushing it too hard.  You need to learn to cut back on the activities."

Last Saturday, my wife wanted to take our daughter to the local zoo.  At first I declined; my body was warning me that it needed rest.  I said they should go without me.  But then the thought of missing my daughter's first trip to the zoo sort of became unbearable and I changed my mind.  I figured, "I'll just sit down as often as I need.  We'll make it a leisurely stroll through the zoo.  No big deal."

My daughter barely blinked as she stared at the exotic animals, particularly the hog-sized bald eagle.  She's fascinated with birds.  Her mother and I, it seemed, were more content watching her watch the animals.

It wasn't the walking that got me so much as the weather.  It was freezing by Southern California standards--48 degrees--and I made one of the cardinal mistakes a CFSer can make...I went out underdressed.  And to make matters worse, the zoo had a policy (probably for liability insurance reasons) against selling hot beverages of any kind.  Damned lawyers!

I made it through the day without crashing, although I shivered through much of it.  By the next morning, still feeling somewhat robust, I thought maybe I had gotten away with "the great zoo caper"....until around noon.  I went from light housework to couch-locked in the span of a half hour.  The crash hit hard.  

And boy did this crash have legs.  It just went on and on all week.  Before this crash, I thought maybe I'd passed the stage where weeklong crashes were possible.  It turns out I just needed to push myself a little harder.

My work schedule didn't make the situation any easier.  (Here I'll insert the my usual acknowledgement  that I'm indeed lucky to still be able to work. Many of us aren't.)  In one of my cases, I'm up against a team of lawyers from South Florida whose ethics have always seemed questionable.  Last month they filed three large motions on a date that would ensure all three of my oppositions would be due on Christmas Eve.  I guarantee that was not a coincidence.

Planning ahead, I made it my goal to finish and file all three oppositions by Friday the 21st so I could enjoy the four day holiday weekend.  Not to prolong the suspense: I did it, but last week was fairly miserable.  While I'm lucky that brain fog is not one of my usual symptoms, working so hard while physically crashed was brutal.  I was a cranky, angry bastard by Friday afternoon and I may owe one or two of my coworkers apologies.

We (the family and I) have now returned to my "ancestral homeland" about an hour up the coast from our house: my parents' house.  We're here for four days, and it's a little like regressing to childhood.  I take long naps on the couch and pretty much just watch football and enjoy my family's company all day.

My mom, who knows about my diet from reading this blog, secretly purchased the same "Low Carb Gourmet" cookbook that my wife uses and is making a few paleo-friendly dishes for our big Christmas dinner.  My brother is giving me a good-natured ribbing for being "difficult."  But, hey, I didn't ask for that.  But I'll certainly take it!  Just wait until I get my hands on the pumpkin chiffon stevia pie.

My brother and his family are here from San Francisco.  This is the first time that my daughter (16 months) and his daughter (23 months) have spent any significant time together.  They toddle around from room to room, following each other and exploring all the knick-knacks of grandma and grandpa's house; a couple of curious little two-foot princesses.  I think (hope) we're watching the beginning of a life-long bond.

With that, I want to wish everyone Happy Holidays.  Stay stress-free and warm and enjoy whatever it is that makes you happy this time of year.

....and bad news. (Hint: Food Poisoning)

Honestly, you can't make this stuff up!

Yesterday, I wrote about how I hadn't had a crash in five weeks.  I noted that I felt a possible crash coming on at the time of writing, but I was hopeful that it was another false alarm.

About two hours later, I was sitting in front of the TV innocently munching from a tub of mixed nuts from Trader J__'s.  Within five minutes, I started to feel stick to my stomach, so I stopped eating the nuts.  For the rest of the evening, I felt slightly sick to my stomach, but the feeling wasn't too concerning.  It felt more-or-less like the discomfort when one has eaten too much...almost like bloating.

I went to bed around 8:30.

At 10 I woke up with a raging storm in my gut and full fledged crash symptoms.  I snuck out of bed and went downstairs to the garage and grabbed a bucket.  I then spent the next three hours lying in a fetal position on the couch, occasionally vomiting into the bucket (and then, of course, cleaning out the bucket.)  At the risk of saying too much, I was also running to the bathroom frequently due to plumbing problems on the other end.

After a few hours, the stomach storm died down enough to attempt sleep, but we all know that's just the beginning of another battle.  Once the crash symptoms have been awaken, sleep usually proves elusive.  True to form, I lay on the couch attempting sleep for the rest of the night but never quite achieving it.

So now I'm home from work today with all the usual (for me) crash symptoms: body aches, muscle twitches, shortness of breath, tachycardia, and of course extreme flu-like malaise.  This not a good week for me to miss work because we have a deadline on a big motion opposition.  Luckily, I got ahead of the game and drafted the vast majority of the opposition last week, just in case another crash came along.  (I manage my time much better now with ME/CFS).

My co-workers will have to pick up the slack - there's simply no way I could be at work in my current condition.  I can barely get out of bed to take care of my basic needs.

What did I learn from all this?  First, that it was an incredibly unlucky coincidence to get food poisoning a few hours after writing about how great things were going.

Second, I'm not surprised that the food poisoning made my stomach feel bad, but I am a little surprised that it triggered a full-blown crash.  One thing I didn't mention in yesterday's post was that, over the last five weeks, I actually caught a cold that didn't trigger a crash.  I got the usual cold symptoms, but not the full-blown crash.  This was a first since getting ME/CFS.  I was hoping it was a sign that my immune system had healed itself somewhat.  

Now I know that the immune balance I seem to have achieved over the last five weeks is still delicate.  Any moderate to severe insult to my immune system is enough to trigger a crash.  The true test will be in how long it lasts and if it remains as severe as it is right now.  I'm hoping to wake up tomorrow morning after a full night's rest and feel at least 50% better.  We'll see....

The Perfect S--t Storm

I lost my grandfather on Sunday--as in, he passed away.  It wasn't unexpected, as he'd been in bad shape for a while and we knew that he could pass at any time.  Still, as much as I thought I was prepared for it, it's a shock when it happens.  Preparation is one thing, but grieving is another, and I hadn't started the grieving process until he actually passed on.

I'm almost reluctant to dovetail this topic into a discussion of ME for fear of appearing to have my priorities misplaced.  But this blog is, after all, about ME, so I'll set aside my grief for a moment and talk about how it has affected my health.

It's a double-jeopardy situation.  First, there's the emotional stress.  More experienced PWMEs tell me that emotional stress can cause crashes.  This is my first go-around so I'll have to take their word for it.  It certainly hasn't helped.

Then there's the unplanned, last minute trip to the funeral.  Missing this funeral is simply not an option unless I, myself, am dead.

My grandfather happened to live on Santa Catalina Island, which lies about 26 miles off the California coast.  So that's where the funeral is.  This means we're making last minute ferry reservations and last minute hotel reservations. It also means travelling with an infant and probably 100 pounds of luggage, mostly baby equipment.  That trip begins tomorrow.  Sounds like a crash in the making, right?  As the late Billy Mays would say, "but wait, there's more!"

Yesterday I woke with a sore throat.  By late afternoon, it was clear that a pretty serious crash was building.  The body aches and heavy fatigue were setting in and my body temperature had dropped to 96.7, as happens sometimes when I crash.  By this morning, my nose was stuffed and it was clear that this crash would be among my worst.  I'm certain that this is a "sick on top of sick" situation, meaning I caught a virus that precipitated the crash.  

I'm in survival mode right now.  I just need to get through this weekend somehow.

Making matters worse is that we're supposed to travel across country next weekend for my cousin's wedding in New York.  We'll see how this crash progresses, but I may have to back out of that trip.  I just need to do whatever it takes to get back on my feet, so long as "whatever it takes" doesn't mean missing this funeral.

On Camping and Trying to Pinpoint my Crash Threshold

The family and I went camping with friends this weekend at a spot on the coast just north of Santa Barbara, called El Capitan.  It's difficult to get a reservation at El Capitan because of its unique location on a wooded bluff overlooking the Pacific.  But due to Mrs. Calvin's foresight and quick-draw keyboard fingers, we secured a coveted reservation back in February.  So despite my hesitation, we decided to go for it.  Part of this decision was that I also wanted to test my theory that camping might be an ideal "activity" for a moderately ill PWME.  After all, the whole point of camping is to go into the woods and just chill out.

Well, the weekend turned out great ... until we returned home Sunday evening and I crashed.  But, the good news is that this crash may help me pinpoint my crash threshold.  

We arrived at the campground on Friday morning and, over the next three hours, took our time leisurely setting up the tent and the rest of the camp.  Although this activity involved brief spurts of intense energy, I went about it slowly and rested between tasks.  No problem.  I felt fine that evening and the next day.

On Sunday morning, however, we had to pack up the camp more rapidly because we'd made plans to leave at the same time as our friends and meet for lunch in Santa Barbara.  This packing process was essentially the same process as the unpacking process, only in reverse.  So theoretically, it should have  taken about the same amount of energy and thus, no crash.  The difference I believe was, this time, I crammed the whole process into about an hour.

As usual, I felt fine during the activity, but as soon as it was over and there was a letdown (i.e. getting in the car and sitting down), I could tell I'd overdone it.  I felt extremely weak.

By the time we'd parked the car on State Street in Santa Barbara, I'd recovered a little.  We did meet our friends for lunch, and I'd regained some energy.  I was hoping that whatever I'd felt in the car had been just a false crash.  But any hope of it being a false crash was extinguished about an hour after arriving home when I went into full crash mode, with aching, flu-like symptoms and shortness of breath.  I woke this morning in an even worse state.  So, I think I may have learned a valuable lesson about pacing, namely: 


DO IT!

I should mention that there are a few other possible causes of this crash, although I think they are less likely.  Nevertheless, I want to record them for my own future reference:

• I switched from Famciclovir to Valacyclovir on Saturday night when the Famciclovir ran out.  Could this be a start-up reaction?  Probably not.
• Both of the babies on the trip were sick, and C once sneezed directly on my face.  Could this be a regular viral illness?  
• I forgot my B12 supplementation on Sunday.  Could that cause a crash this severe?  Doubt it.

    

Lessons learned about 2 of my supplements: Ribose and SAM-e

My wife, baby, and I just returned home from a weekend at my parents' house.  My parents live about an hour's drive up the coast, which usually isn't too tedious of a trip for me (although I felt too sick to drive - my wife had to handle that part).  The original point of the trip was for me to attend a class reunion, but by the time we arrived at my parents' house, I was too crashed to attend.  But the weekend turned out fine anyway.  It's always gratifying to watch my parents fawn over their granddaughter.  I've learned that babies are as addictive as crack cocaine to grandparents.

When packing for the trip, I remembered all of my supplements except D-Ribose.  I usually take 5g of Ribose twice a day.  By the time Sunday morning rolled around, I'd missed two doses and was feeling a type of malaise that I hadn't felt since before I started taking Ribose back in November.  I was shocked at how quickly the effects set in.  It's scary to think that my ability to function on a semi-adequate level each day may be due to this one supplement. It's as if the Ribose, alone, is artificially propping me up enough to do my limited daily activities. 

When we reached home late Sunday afternoon, I immediately took 5g of Ribose and felt a return to "normal" within a half hour.  That will be the last time I forget to bring the Ribose when I leave the house!

The other revelation I had is that SAM-e is powerful, and needs to be taken with plenty of potassium.  I've been on Fredd's active B12 protocol since February, but had not added any of the optional cofactors, such as SAM-e, until last week.  Fredd is clear that one needs to watch his/her potassium levels when increasing dosage of B12, or when adding cofactors.  I thought I had covered my bases by increased my potassium intake by 400mg/day at the same time as the SAM-e.  This was clearly not enough.  Beginning Friday, I came down with the same neuro symptoms - the same crushing brain fog and muscles twitches - that I'd experienced when I first started taking B12 back in February.  So I backed off of the SAM-e and B12 yesterday, and increased my potassium intake, and by today the neuro symptoms had almost completely disappeard.  

Lessons learned.

ME/CFS yanks my leash

ME/CFS does't seem to want to let me get too cocky.  I'd been on a pretty good streak of non-crash days and was starting to get a little uppity I suppose.  I was hoping that the Equilibrant was slowly clearing the way to better health...and maybe it still is.  But starting yesterday afternoon, ME decided to remind me that I'm still a long way from healthy.

I got the flu and I got it BAD.  I feel like I've been hit by a bullet train.  Weak, achy muscles, tight chest, and what feels like a temperature.  If fact, when I took my temperature, it was above 98.6, which is unusual for a PWME.  Given that, like most PWMEs, I'm usually around 97.2, that's a fever for me.

I'm home laying in bed now trying to regain my strength.  I'm going to nap now and the hopefully I'll see some of you on the message boards later.

Suspending LDN....for now

Unfortunately, I am going to suspend the low dose naltrexone (LDN) experiment....for now. I have been on a moderate crash since Wednesday, which is about when I started taking the LDN. The crash and the LDN may be completely unrelated--in fact I think they probably are--but I can't take the chance.  Even if I only have a slight suspicion that a treatment is making me worse, it is extremely difficult to push forward with that treatment in spite of the suspicion.

Unfortunately, a trio of old symptoms which I thought had been resolved, have returned with this crash: shortness of breath, swollen tongue, and G.I. distress. None of these are normally reported side effects of LDN.  I have also experienced the usual side effect of LDN: insomnia.

If/when I return to normal functioning within the next few weeks, I plan to eventually resume the LDN and see if these symptoms return. For now, I'm disappointed, especially since I was doing so well before this crash. I almost wonder if I got too greedy and should have simply left well enough alone and not taken the LDN. There's always a temptation, when we get a little better, to push ahead and try to improve even further. It seems many times, we end up backsliding instead.  Having said that, I'm not ready to write off LDN.  I will give it another chance in the future.  If it fails me again, I will probably drop it at that time.

My hot streak ends, but there's good news on the horizon

Finally, after 15 days of high functioning (above 75%, with only mild flu-like symptoms), I came crashing back down today.  But this time, instead of bemoaning the crash, I just feel thankful for an unprecedented run of good days.  I knew it had to end some time, so I tried to enjoy every minute of it while it lasted.  I haven't strung together 15 good days since I became ill in June, and one of those days was my best ever (based on my personal rating scale).  I'm not sure if the Famvir or the methylation protocol had anything to do with it, but it's certainly possible.  

As for what caused the crash, I have two theories.  1) I ran a couple of errands yesterday and allowed myself to become stressed out.  I ran late for two appointments, and found myself speeding around and yelling at other drivers.  It felt so good to be part of the world again, I got carried away.  While I wouldn't normally think this could cause me to crash, I've been warned by so many veteran ME/CSFers that days like this can cause a crash, that I tend to defer to their expertise. I simply have to learn to take it easy when I'm feeling good, or I'll be doomed to repeat this cycle.

2)  The other possibility is that the crash is a reaction to taking low dose naltrexone (LDN).  I began taking it last night, starting with a very low dose of 1.1 mg.  But, the commonly reported side effect of starting LDN is insomnia, not fatigue, so I'm less inclined to give credence to this theory.

Finally, the good news!  I've been on the waiting list for my first choice ME/CFS specialist doctor, but his schedule is so impacted, he couldn't see me until late August!  I just learned a few minutes ago, by a stroke of good fortune, my appointment has been moved up to April 27th--four months earlier than expected!  I'd do a little dance if I had the energy.  If you're reading this, thank you to the person who helped move my appointment -- you know who you are!

Crash update

I went to my GP today because this crash has been getting worse day by day, and I began to wonder, "where's the bottom?"  "How bad can this get?"  My doctor (we'll call her Dr. L) took one look in my throat and whipped out the prescription pad so fast it was like she had it on a holster.  For a moment, I balked.  "Do I really need antibiotics?"

I was thinking back to all the times in the last six months when I read about the perils of antibiotics and how they decimate the "good bacteria" in the gut, and how I promised myself I wouldn't take them again unless I was on my deathbed.  In fact, I was posting about that just this past Friday.

My GP frowned, put the Rx pad away, and continued by listening to my breathing and concluded that I have a respiratory infection and possible strep throat.  "You need antibiotics," she said.  I agreed wholeheartedly.  Funny how your resolve melts away when you're sick.  I can always repopulate my microflora with a strong probiotics later.  I need relief NOW.

As far as the severity of this crash: This is as bad as it's ever been.  The only thing I can compare it to is when this whole thing began back in June.  Of course, back then I thought I simply had a bad virus and I'd be back to my normal self in a few more days.  Ah, the good ol' days.  

Does this mean I'm back to square one in terms of healing?  Did this crash set the clocks back to June?  I certainly hope not.  

Big Crash

Unfortunately, I'm in the middle of one of the worst crashes I have yet experienced.  Even getting out of bed to go to the bathroom or kitchen is a big effort.

I'm not exactly sure what caused this crash because there are two obvious possibilities.  The first is that I am experiencing B12 protocol start-up symptoms, as I'd been warned about.  The other possibility is that I simply caught the cold/flu that my wife and daughter have been struggling with all week.  Actually, I think this second possibility is more likely because I have other symptoms consistent with a cold/flu, like a raging sore throat and a stuffy nose.  It seems very unlikely that I will be able to go to work tomorrow at this rate.

The only good thing about this crash is that it came on a weekend, and apparently - and I never knew this - the TV airwaves are full of movie matinees on Sunday.  I'm trying to decide between The Replacements and Rocky III right now...

Low Potassium Crashed Me

For several weeks, I'd been flirting with the idea of trying one of the vitamin B12 protocols.  Once I finally decided to try it, I had to decide between the two protocols suggested on Phoenix Rising.  Then there's the matter of figuring out the most current version of the protocol and exactly which supplements are to be taken in which amounts.  It's not as clear as you'd think.

As I digested all this information, I happened to have a bottle of vitamin B12 (methylcobalmin) lozenges lying around.  So I thought, "what the hell.  I'll get a little head start on whichever protocol I choose."  I figured, both protocols involve B12 supplements (along with at least 5 or 6 other things) so I might as well start popping the B12 while I make up my mind.

Yes, I had read the several, emphatic threads on PR warning about potassium depletion when starting the B12 protocols.  Apparently, it's critical to supplement potassium when you're on an active B12 protocol.  But, honestly, who thinks a few days head start with the B12 is going to harm anything?  (Actually, it was more like a week)

Well...last Saturday, I developed a brain fog like nothing I'd experienced before.  It lasted three days, and came with a general crash and a new type of headache.  I thought, could this be potassium depletion already?  After Googling the symptoms of low potassium, I decided it probably wasn't.  Wrong!

A day later, my muscles began to twitch...all over my body...non-stop.  Nerves were randomly twinkling like Christmas lights.  My heart rate increased, brain fog returned, and for the first time in my short run with ME, I truly, truly experienced depression.  It wasn't anything like I thought it would be...it was much worse.  One does not just will himself into a happier state of mind.  I understand now why depression is described as a chemical change.

This lasted for another 48 hours.

While the brain fog could have been caused by any number of things, the twitching and depression pointed unmistakably to potassium deficiency.  I rushed out and purchased a bottle of potassium supplements. Within a few hours of taking the potassium, my symptoms began to resolve.  Now, three days later, I'm still feeling the occasional twitch, but they are slowly fading.

I guess I've learned not to mess around with these protocols.  I had a tendency to think, "it's all just vitamins! This is over-the-counter kiddie stuff."

Not so much anymore.  Lesson learned.

Crashing Again

I was doing well all week, with more energy than I've had since I first became sick in June.  My energy and mental clarity at the office were at almost pre-ME levels.  But unfortunately I crashed yesterday.

Throughout the week, my wife and I had been looking forward to Saturday's dinner reservations at new restaurant.  This would be one of our first times eating out since our daughter was born in August.  Then I awoke yesterday morning feeling like  I'd been hit by a nasty flu bug.  It was the same, familiar flu-like illness.

We still made the reservations, and I tried to forget about how I was feeling.  This dinner was important to my wife, as it was a celebration of her year-end bonus from work.  I'm glad I forced myself to go.  Seeing my wife smile and enjoy her few hours of freedom from the routine of breastfeeding and swaddling our baby was worth the struggle.  

As far as the causes of the crash, I have two theories.

1.  I took an oil of oregano capsule for the first time on Friday.  It is supposed to be powerful anti-fungal to fight candida, and boosts the immune system.  It often causes Herx reactions.

2.  I recently increased my B12 intake, and switched from the inactive to the active form of B12 (methylcobalmin.)    Supposedly when people start this protocol, their immune systems often "switches back on."  But another possibility is that the B12 is causing a deficiency in potassium or folate, as explained in this thread. 

3.  Then again, there's always the possibility that this is yet another unexplained crash--just part of the cycle of ME. 

I suspect that it's probably the oil of oregano, since I'd been on the active B12 for about a week already.  I'll lay off of it for a few days and then try it again and see if the same thing happens.