Saturday, August 27, 2011

Trip to the CFS Doctor

I went to see my two CFS docs on Monday.  This is partly the cause of my week long crash.  I figured if I had to make a 45 minute car trip I might as well see both of them at once.

Doc #1
This is the diet/infusion doc at the Marino Center.  He is the one that sent me to the nutritionist for the elimination diet (see Diet From Hell) that made me crash for over a month.  This was my first visit back with him since then.  First we went over some lab tests I had done months ago (I have been avoiding him since spring).  Turns out I am free from any yeast or fungal infections.  Which kind of shocked me since I've had some sort of skin rash going for over a year now.  I figured I was full of yeast or fungal overgrowth or both.  But I have neither.  Yeah!!  Small but significant victory.  I won't have to go through hell to kill off the little beasties.

Second we discussed my horrible reaction to the diet.  We decided that my body isn't getting rid of toxins very well.  He needs to get my body functioning better before we try detoxing again.  So I am now supposed to schedule three glutathione infusions.  I will get one a week for three weeks at increasing dosages each week.  We'll see how I do with these and then decide where to go from there.  If they work and I feel better, then a very gentle and controlled detox will be done.

He tweaked my supplement regimen to increase my anti-inflammatories and we ran out of time.

Doc #2
This guy is my primary CFS doc until I see Dr. Komaroff in October.  We went over the same lab tests and also the blood work my regular primary doc ran on me the week prior.  We went over supplements again with some more tweaking.  Then discussed the steroids.  He upped the dose again.  I'm now at 20mg/day but we spent a lot of time figuring out the proper dosing schedule.  He hadn't realized that I was nocturnal and I was taking the pills at the wrong time of day.  He also put me on fish oil so that I could stop taking the Fenofibrate my regular doc put me on.  The stuff gave me horrible chest pain from heartburn so I wasn't taking it daily like I was supposed to anyway.

He did the usual weight and blood pressure check on me.  We talked about my mobility.  He was glad I had a walker so that I wasn't totally restricted to the wheelchair to get around.  More exercise.  Hah, he doesn't know I don't make it past the end of my driveway with the thing.

Then he sent me off for more blood work.  He is checking my magnesium level again.  Apparently my regular doc checked serum levels (blood level) and not cellular level.  Serum level only tells you how much of it got from my stomach into the blood not how much the cells are actually using.  He also checked my B12 again and something else that I've forgotten already.  I still haven't got my test results back.  It takes longer for these guys since the tests are out of the ordinary and have to be sent half way across the country.

Anyway, the action plan is for me to do the infusions, increase my steroid dosage and carefully watch for a reaction, and alter my supplement dosing.  On wards and hopefully upwards.  And I still hate fish burbs!!

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