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

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

Saturday, April 20, 2013

Treatment and Personal Update

Rifampin:  As I described in this post from March, Rifampin is an antibiotic that also has antiviral properties which have helped a number of ME/CFS patients improve dramatically, according to one of my doctors, Dr. C.  Dr. C advised me to take Rifampin when I had time off of work because, if the drug had it's intended effect, I would undergo strong flu-like symptoms.  The idea is that the flu is supposed to "kick the immune system back into regular functioning."

This past week, I took time off of work to bond with my new daughter, so I also seized the opportunity to take the Rifampin.  So far, nothing has happened.  If something was going to happen, it's supposed to happen about 7-14 days after beginning a week-long course of the drug.  I began taking Rifampin about 10 days ago and finished 3 days ago.  It doesn't feel like anything is going to happen, but I wasn't holding my breath anyway.

Nutrigenomics:  I'm still implementing Step 1 (Basic Supplement Support) of Dr. Yasko's plan, and taking my time with the process.  Trying to be patient.  In the meantime, I received results of a blood ammonia test which confirmed that I have high serum ammonia levels (the highest number it can be without being out of range.)  This is more confirmation that I have the CBS & BHMT mutations, so I hope to use these results as further motivation to stick with the Yasko protocol.  The protocol is somewhat expensive and a hassle to track, but when I put all of the evidence together, it seems abundantly clear that my methylation cycle is deficient and needs to be treated.  (For background on this, see the Nutrigenomics tab on the right-hand side of the page).

Personal:  Having a second baby around the house certainly has not been easy, but at the same time, it has not been as difficult as we had been lead to believe by others.  Some of our "couple friends" had cited the mantra that 2 kids somehow equals 3 times the work.  So far, it hasn't been that bad.  Of course, it's been harder on my wife because she's the one who stays awake half the night breastfeeding, but even still, she agrees that it's been about as much extra work as we would have expected--that is, about double.

Right now, 3 of the 4 of us have colds, my wife being the only one that was spared (so far.)  It's hard to see my newborn daughter struggle to breathe through a stuffy nose, but there isn't much we can do but wait and occasionally use a rubber-bulb nasal aspirator.  As for myself, I started attacking the cold with zinc, liposomal vitamin C and thymic protein at the first signs of symptoms (5 days ago), and I truly believe these treatments worked.  Some cold symptoms still linger (sniffles & slight cough) but it doesn't seem to be making me feel much worse.

In the meantime, I returned to work yesterday and learned that one of my cases is likely to go to trial in mid-June.  I had sought a continuance, and had very good reasons to support this request, but the judge inexplicably denied it.  This means that the next two months will be insanely busy, and that I will have to conduct a two-week federal jury trial with millions of dollars at stake.  This upcoming trial makes the last trial that I wrote about in February seem like a mere traffic court hearing.

My firm has already determined that I will act as lead counsel for the trial, but the good news is that I will have a second attorney helping me.  If I have a crash in the middle of trial, I will have to "power through" somehow, but it is also nice to know that I have backup.  What I'm more concerned about is the large volume of work and long hours that are ordinarily required to prepare for trial.  I've asked the firm for extra support and "manpower" so that I don't have kill myself just getting to trial.  Before ME/CFS, I might have tried to handle it all myself, working 14 hour days and weekends. Now, no.

With two sick babies at home and a major trial on the horizon, it's unlikely there will be many times in my life as chaotic.  But a few years ago, this trial might have made me more anxious.  The combination of having kids and getting ME/CFS has given me perspective about what's most important.  Of course, it's always easy for me to sound calm when, as now, I'm feeling fairly decent today.  Let's see how I feel when it's, say, 3 days before trial and I'm in the middle of a crash.  When I'm at my baseline, it's often hard for me to imagine ever crashing again, until I do, and the cycle starts over.  For now, I try to focus on the sense of accomplishment I will feel when the trial is over.

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