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

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

Thursday, May 9, 2013

Personal Update: Significant Setback

First the good news.  A few weeks ago, I wrote about an upcoming court trial at which I was scheduled to act as lead attorney.  It was set for mid-June, and I was concerned about how I would handle the long hours needed for trial preparation.  What would I do if I crashed during trial?  

Despite my prediction, the case settled last Monday.  This was a major relief.  While it's only a matter of time before another trial of that size comes along, I can rest easy for now.

Now the bad news. Two weeks ago today, I crashed fairly hard and haven't been able to pull out of it since.  The average of my daily health rating for these last 14 days is the worst 14 day stretch since I was in my "acute phase," which ended in about November, 2011.   What's more, an old symptom has returned with it: kidney pain.

It was only last month that I finally removed the "kidney pain" column from my daily health chart.  It had been one of my "big three" symptoms for most of the past 2 years, but I had noticed that the numbers slowly tapered off over the last 6 months to the point where it was mostly zeros for the past several months.  So I thought I was done with kidney pain.  Now it seems to be back as strong as ever.  I've made an appointment with a nephrologist for later today.  This will be a second opinion.

It's very difficult to pinpoint what might have caused this crash.  As usual, I have a number of theories, but they all have problems.  Here there are in order of likelihood:

1.  Rifampin:  My course of Rifampin treatment ended 8 days before I crashed.  Dr. C said if the Rifampin worked it would make me feel fluish for a few days before I started to feel better.  But it's been two weeks now.  Maybe I didn't have the rebound that Dr. C anticipated?  Rifampin is known to have strange effects on the immune system. 
2.  Yasko's methylation protocol.  I started Step 1 of Yasko's protocol about a two months ago.  It's possible that even this first step was enough to cause my body to start "pushing metals," thereby taxing my liver, kidneys, and generally making me feel ill.  I didn't think this process would start so soon (in Step 1). 
3.   To implement Yasko's protocol, I also stopped taking certain supplements to make room for others. For instance, I stopped taking a powdered multivitamin in favor of her NHF Multivitamin tablets.  I stopped taking NT Factor (because of it's calcium content, which Yasko warns against) and started taking more magnesium. 
4.  Other Supplement Changes: I recently switched brands of D-Ribose to save money.  I went from Douglas Labratories to Sedona Labs.  I also switched back to regular Coenzyme Q10 from the more active form: Ubiquinol. 
5.  A couple weeks before the crash, Dr. W had me switch from testosterone cream to injections because the cream wasn't showing any results in blood tests.  (Some people's skin has enzymes that prevent he cream from absorbing).  Could this be a reaction to testosterone?  I doubt it, but I stopped taking the injections right away after the crash.
6.  As much as I hate to even acknowledge the possibility, other patients keep telling me that stress can be a crash trigger for PWMEs.  I don't think of myself as stressed, but I suppose it's possible that the looming trial was already causing stress that I was unaware of.  But I still doubt that a little stress could cause a big crash like this one.
So, as most of you know, it gets very complicated trying to figure out the cause of a crash.  For now I just have to accept that the progress I've made over the last two years might have evaporated.  If so, I won't be discouraged.  I just have to keep fighting and renew my efforts to work with doctors to get me as functional as possible.

In the mean time, the new baby is doing fine.  Now that she's about six weeks old, she's starting to become more alert and is awake for longer portions of the day (and night!).  Just in the last couple of days we've started to see her first social smiles.  Meanwhile, her older sister (20 months) tries to be helpful about 95% of the time, "reading" books to her and patting her back after feedings.  The rest of the time she's whining and trying to draw attention back to herself.  We, of course, were told to expect that behavior, so the only surprise is that we haven't seen more trantrums.

Crash or not, life goes on.  I'm glad my family is there to make me laugh through it.


  1. Congratulations Patrick!!! I didn't realise you had just had a new baby, she sounds adorable! I'm sorry about the crash though, they can be discouraging but hang on in there, you will get through it!

  2. I assure that with time it gets much much easier to figure out the cause of crashes. Major crashes usually include other new weird symptoms that after you get checked out by the doctor and find that it's not some new disorder, are just something to accept as a new crash-induced symptom and will probably go away once you have re-gained some strength. The best thing is not too get too stressed about the symptoms once I doctor has checked them out.

    1. I look forward to the day when these crashes start to make sense :)

      Thanks for letting my know your experiences.

  3. Hey Patrick, so sorry to hear about the crash you are experiencing right now. I am 2.6 years into this whole deal for me, and my crashes are starting to come into focus in regard to cause. For me it is lack of quality sleep, over exertion, or allergies that compound the underlying condition that ME is. Trying to minimize the random onsets of crashes can make life a bit easier. Anything unknown to most humans causes a lot of stress and anxiety. For me the combination of NT factor, small testosterone injections weekly (which get me in the middle of the normal range), D ribose, and Vyvanse (small dose, 30 mg) have kept me at an even keel so to speak. I too have certain periods at my job where you need to answer the bell, and put in more time. I tread lightly now versus trying to be a tough guy and just gut it out. Keep us posted on the crash Patrick, and this too shall pass!