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

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

Wednesday, July 31, 2013

That precarious feeling

Do you ever get the feeling that you're balanced precariously between crashed and not crashed?  Like you could tip in either direction at any time?

I've been feeling that way  ever since about two weeks ago when I caught a mild bug. Unlike other bugs, it was actually so mild that it didn't cause an immediate crash.  The only reason I know that this bug is still hanging around is that it has left me with constant sniffles and post-nasal drip.  That and the return of an old symptom that I thought I had rid myself of after the first year with ME/CFS: morning flu.  During my first year of illness, I would get this particular flu-like feeling that would surface in the morning hours between 7 and 9 a.m.  Then it would usually just dissipate.  Well that's back too.

So I almost feel like a spectator to my own health.  Of course I've upped the zinc and vitamin C doses (still within safe limits), and tried some other tricks, but nothing has resolved.  It's as if all I can do is wait and watch to see which direction I tip.

This past weekend, my wife and I took our kids to my parents' house to spend some quality family time. Everything went well until Sunday when, out of nowhere and within minutes, my wife became ill with a severe flu.  It came on quite strong, with body-racking chills and a high fever.  So we drove home soon after the flu's onset and prepared to enter into a sort of survival mode just to get through the week.

It's not even 3 days later now and Mrs. Calvin is back on her feet nowit was a 48 hour bugbut two things struck me while she was ill.

First, for a brief 24 hour period, I was actually the more functioning, capable member of the team, and boy did I relish every second of it.  It was like I was trying to make up for two+ years of her helping me when I'm down.

The second thing was how quickly Mrs. Calvin recovered.  Within about 30 hours, she had rocketed past me on the functionality scale.  By Tuesday she was attending an important meeting and supervising our daughter's swim lesson.  All the while I'm cringing and trying to cajole her to cancel her obligations and rest up.  Mostly, she shrugged off these suggestions and was no worse for the wear.

It made me realize that in two short years I seem to have lost all perspective of what it's like to have a normal, functioning immune system.  I used to be like her too.  No flu or cold could keep me down for more than about 48 hours.  All that seems like a different lifetime.  

Saturday, July 20, 2013

My shockingly poor circulation

In ME circles, keep seeing articles and research about poor blood circulation.  I wrote about one recently.   For me personally, this is a key issue, but I can't figure out how it ties into my other symptoms.  I just know that it does tie in...somehow.

It all starts with the arms and hands for me.  For others, it seems to start with the legs and feet.  This is a problem that has become much more prominent for me in the last 6 months.

What happens?  I can't have my arms or hands anywhere above the level of my heart for more than a few seconds without them becoming tingly and numb.  For example, do you ever lean back in a chair, interlace your fingers behind your head in order to relax?  When I do this, my arms and hands immediately being to tingle and fall asleep.

And my arms don't even need to be that high for this to happen.  For instance, when I do light yoga, even holding my arms out to the side at about chest level (the same level as my heart)--as in Warrior 2 pose--I experience the same problem.  When you think about it, that is insanely poor circulation.  How can my heart not even mange to pump blood horizontally to the hands that are two feet away?

Some people believe that the brain fog we experience in ME/CFS is less from inflammation as it is from poor blood flow to the head.  I'm not sure I agree with that, but I do think that inflammation is somehow also involved in these poor circulation issues.  I know this because when I'm crashed and feeling overall  inflammation, my hand numbness gets even worse.

I haven't spoken with many others who specifically experience the poor circulation in the arms and hands, but I'd like to hear from others how & where you have poor circulation.

I'll also leave you with a few links to other articles & studies about poor circulation in ME/CFS, besides the one linked above:
Then there's the question of how poor blood circulation relates to low blood volume, (which is more the issue with POTS, OI, and sometimes tachycardia) if at all.  They are often treated as separate issues in the medical literature, but then again, it's hard to see how low blood volume wouldn't contribute to poor circulation.

Incidentally, the one treatment that I have found to help with poor blood flow is D-Ribose. When I forget to take D-Ribose or am late with a dose, the problem is worse.

Update to the surfing post

Recently I wrote a post about my first, very mild attempt at surfing since coming down with ME/CFS.  Afterwards, my big concern was: would it make me crash?

My attempt at surfing was on Sunday.  I was doing fine...even great...for the first half of the week.  Of course, nearly every muscle in my body was sore because surfing uses uncommon muscle groups.  But it was a good kind of sore--something I've "sorely" missed in the last couple of years. (Sorry, that was bad).

At about Midday on Wednesday, I began a two day mini-crash, but I don't think  it had anything to do with surfing.  It was, once again, due to a bug going around my family, most likely brought home by my two-year old daughter from daycare.  

So this gives me encouragement to possibly try surfing a little longer the next time I'm feeling decent.  Thanks for reading.  

Monday, July 15, 2013

What Happens in Vagus, Stays in Vagus: ME/CFS a viral infection of the vagus nerve?

This article from the HHV-6 Foundation website describes recent research suggesting that ME/CFS may be due to viral infection of the "vagus nerve," a cranial nerve that controls all sorts of important functions like heart rate, blood pressure, and the ATP cycle.  (See, Wikipedia here)
"Herpesviruses and certain intracellular bacteria establish latency in the vagus nerve and reactivate during periods of stress or illness, causing the release of proinflammatory cytokines. HHV-6 is a highly neurotropic virus and potent inducer of cytokines such as IL-6 and NFkB, which many groups have proposed as an etiological theory for the role of HHV-6 in neurological conditions such as seizures and epilepsy. If this low-level “chronic” infection is localized to the vagus nerve it would be undetectable in the plasma, but could be demonstrated through analyzing tissue biopsies of the vagus nerve, VanElzakker suggests. HHV-6 is well known for invading the hippocampus and other parts of the limbic system, and also establishes residence in the human sensory ganglia along with other neurotropic herpesviruses including HSV-1 and VZV (Hufner 2007)."
One problem with testing this theory is that viral infection of a nerve cannot be detected through simple blood plasma samples.  That appears to be why the researcher behind this theory, Michael VanElzakker, proposes testing the theory by taking tissue samples from PWMEs who have "died prematurely from other causes."  Apparently, what happens in vagus stays in vagus.

Sunday, July 14, 2013

Now I've really gone and done it!

My life's passion before ME/CFS was surfing.  Both my wife and I would surf whenever we had free time.  But in an ugly irony, my doctor (Dr. C) believes that I probably contracted ME/CFS due to an enterovirus I ingested while surfing in dirty water.

Lately, when I'm feeling up to it, my wife and I have been spending our summer Sundays at the beach. I tend to feel better and more energized when I get a large dose of Vitamin D from the sun.

Today we packed the car as soon as the kids woke up and were at the beach by 9:00 a.m. with our two baby girls and a veritable supply train of infant care supplies.  Of course, these days we only pack one surfboard (my wife's) instead of two.  I set up a half-tent cabana, settled into my beach chair and prepared for a morning of beach chair riding.

My wife brought her old longboard instead of her newer, shorter board.  It's an eye-searing hot pink and looks hilarious among the usual white boards of the other surfers.  I love to watch Mrs. Calvin surf on this hot-pink abomination because (a) it's comical, and (b) it's so easy to spot her in the line-up.  She can be picked out from 70 yards, no problem.  And this makes it simple for me to point her out to our older daughter, C, as Mrs. Calvin catches a wave.  "Look, there goes mom!"

"Mommy surf!" says C, clapping her hands.

After 45 minutes, Mrs. Calvin came back to shore, took a seat, and began breastfeeding the baby.  We watched the other surfers.

On my very best days, I can sometimes convince myself that I am close to normal.  In reality, I am not close.  My physiology is too deranged in too many ways for that to be true.  I sometimes indulge the fantasy anyway.  Lately, I've been further encouraged by the testosterone injections that I've recently started taking.  They do nothing to treat the root cause of ME/CFS, but they make up for some of the weakness caused by it.  (That's a topic for another post).

Nothing motivates me to want to surf like watching people who are doing it wrong.  Summer brings out all the beginners and "kooks" (people who think they know what they're doing, but really don't).  When I analyze my feelings toward them, I realize it's nothing more than jealousy.  These kooks call themselves "surfers" and play up the image of a surfer, and they don't deserve it.  I suppose I feel like I actually deserve it, but of course I can't because of ME/CFS.  It seems unfair.

For over 4 hours, I debated with myself about whether to attempt surfing today, which, if I did it, would be the first time since I came down with ME/CFS over two years ago.  My default position was, "no, it's not worth the crash."  I changed my mind 7 or 8 times.  The matter of the hot-pink abomination also factored into my decision making.

You can probably guess where this is going.  At around 1p.m., I decided to catch one single wave.  I would accept whatever consequences came.

Once I'd made the decision, I felt surprisingly nervous.  Would I remember how to do it?

I paddled out through the breakers and into the lineup easily.  It felt natural.  I drew some stares from the other surfers for the hot-pink board, but nobody said anything.  In surfing circles, an osentatious board or wetsuit usually means the owner is either a complete kook or a phenomenal talent.  I am neither, but they didn't know that yet.

The most exhaustive part of surfing is paddling out through the breakers, so I decided that I would only do this once.  That left no margin for error.  If if paddled for a wave and didn't make the drop, I would allow myself to wash back to shore.  No do-overs.  For that reason, I wanted to make sure that whatever wave I chose was wide open (no other surfers competing for it) and relatively easy to make.  I wanted to take my time and wait for the perfect wave.  This could be my last wave ever.

Waves come in sets of about 4 to 10.  After waiting 20 minutes for the right set, a large set of waves came through.  The other surfers in my area cleared out as they caught the earlier waves in the set.  By the end of the set I was alone.

I paddled for the last wave in the set and didn't think I had caught it.  I made a second effort and felt the wave pick me up.  I popped up to me feet, made quick bottom turn and rode the face for a few seconds before the wave quickly closed out.

Two years ago, this ride would have been a unmemorable low-light of a long surf session.  Today, I felt pretty good about it.  I had no trouble popping-up and maintaining my balance on a wave that was quickly closing out.  It felt natural.  All my skills came immediately back to me, which was an enormous relief.

Back on shore, I was greeted by the beaming smiles of C and Mrs. Calvin.  The latter knew knew how much this seemingly unremarkable ride meant to me.

Now, we wait.  Six hours later, I still feel fine, but let's see how I feel tomorrow.

Meet an MD with ME...

Due to a recent commenter on my blog, I was alerted to a new blog by an MD with ME.  In fact his/her blog is called "MD with ME."  I wish I had a name to call him/her, or even a gender, but so far his/her blog is anonymous (which I completely understand.)  Even though the ME/CFS blogosphere is pretty crowded, I think a blog from the perspective of "the other side" (doctors) while at the same time also being on "our side," could add a valuable and unique perspective.

Here's a small excerpt that I found interesting:
I went to a few more local doctors who could not figure out what was wrong with me even though they had to admit something was wrong since normal people don't have a 60 beat per minute increase in their heart rate from lying down to standing, but they were downright unwilling to listen to anything I had to say regarding ME or even postural orthostatic tachycardia syndrome (POTS), which was blatantly obvious! Those doctors had never heard the term ME and clearly thought people with CFS were in some sort of gray area that they didn't really know what to do with, even though when questioned, actually had no idea what CFS really was other than that it involved "fatigue" in some way 
So, as it turns out, even a fellow MD has difficulty getting his/her medical colleagues to take ME/CFS seriously.  Makes you wonder what hope the rest of us have.

Thursday, July 11, 2013

Two Year Sick-iversary

I passed my two year sick-iversary recently.  For many PWME's, that's not very long at all.  For me, nonetheless, it was disappointing.  When I started researching ME/CFS about a year and a half ago, the fist thing I wanted to know was, "what are the chances of recovery?"   (I posted my findings here and here).   A common mantra on message boards was:  You have the best chance of recovery within the first two years.  Yet here I am two years later, slightly improved from my initial "acute phase," but still a long way from recovery.  Hence my disappointment.

On the other hand, I've heard different versions of the 2-year mantra.  Sometimes it's 3 years, sometimes 5 years.  This website says that prime range for recovery is 3 to 6 years, which would mean I haven't even reached the first milestone yet.  So I'm keeping hope alive.  I'll save the pity party for when I pass the 6 year mark.

Tuesday, July 2, 2013

Summary of 5th Appointment with Dr. C

I had my 5th appointment with Dr. C today.  For those that don't follow my posts about Dr. C, he is one of the most respected ME/CFS specialists on the West Coast.  And I say that, not to try to impress anybody, but just to make clear that Dr. C is not a typical PCP who knows nothing about ME/CFS.  He is constantly researching it in the laboratory and publishing findings.

We first reviewed the fact that my experiment with the drug Rifampin had failed.  If it had worked, I was supposed to experience a strong flu for several days--indicating that my immune system had kicked into gear--after which I would supposedly feel better.   Instead, it just caused me to crash, starting about two weeks after I had finished taking the Rifampin.  The crash lasted for about 3 weeks, which is one of the longest crashes I have ever had.  Dr. C said that he has had a few other patients (out of more than 70 who have tried Rifampin), who have had these delayed crashes starting 2 weeks after the Rifampin.  To be fair, I don't know with certainty that the Rifampin caused my severe crash, but I can't think of anything else that might have caused it.

With that, Dr. C admitted that he was "out of tricks."  So to review, the first treatment we tried, Equilibrant, worked and continues to work.  I still take 6 tablets of Equilibrant per day.  It shortened my crashes and made them less frequent.  While it didn't make the high's any higher, it made the lows less low and less frequent.

After that we experimented with a number of other drugs & supplements that Dr. C often prescribes in conjunction with Equilibrant, including Inosine, Amantadine, and Rifampin.  The purpose is to trigger the patient's immune system into shifting back toward Th1.  None of them worked.  Dr. C concluded that I'm going to have to wait until we have better drugs to treat ME/CFS.  Since I'm classified as "moderately ill," I'm not eligible for (nor would I want to take) more advanced treatments like interferon and IVIG.  So I'm now on Dr. C's extended appointment calendar, where my appointments will be spread out by at least 6 months to give time for new research developments to happen in between appointments.  Now my next appointment is scheduled in late December.

Dr. C stated that there is a well-known drug manufacturer who, within the last year, hired an enterovirus expert.  He believes they are working on a drug that is specifically targeted toward RNA strand enteroviruses (which Dr. C says is the cause of ME/CFS).  He believes, with time, an effective drug will be developed to combat ME/CFS, but how long that will take is anyone's guess.

Another thing that struck me about our discussion is that Dr. C is absolutely, 100% convinced that ME/CFS is caused by an enterovirus, and he seems to have a small chip on his shoulder about it (in his own, understated way).  At one point he said that he has proved that enteroviruses are the cause of ME/CFS and he seemed almost exasperated that the rest of the ME/CFS medical community hasn't fully recognized his research.  This will be interesting to follow...

Finally, our appointment concluded, as it always does, with a quick physical examination.  Dr. C noted that my left lymph node is swollen.  Swollen nodes are of course common among ME/CFS patients, but I no longer even notice it.  He also noted that the left side of my tongue is swollen in the back, also the result of immune system (Th2) activation.  Since I was feeling pretty decent today,  I was a little bit surprised by this.  It was a good reminder that even when I'm at my baseline and the only symptom I have is fatigue (like today), there are other symptoms that can be physically observed by a doctor even if I no longer even notice them.  I have simply gotten used to living with these discomforts and they are now simply a part of life that I hardly pay any attention to.