May 20, 2016

I’m sitting here in my naturopathic physician’s clinic, receiving IV alpha lipoic acid which is what my pain dr. and mito specialist recommended.  So I thought I’d post a short update. 🙂  This is my third time here….last week, the ND gave me IV glutathione with taurine and B12.  But so far, I haven’t noticed any benefit..  It’s a blessing that this dr. is so close to our home. 🙂  Not sure how often I’ll be able to see him because it’s very expensive.  I asked him if he’s had any mitochondrial disease patients, and he said no.  He does know about it and how bad it is.


Unfortunately, my kidneys have been spilling more magnesium, so my blood Mg level has been lower than my usual. 🙁  When that happens, I start dealing with more headaches, muscle cramping all over, and an achy back.  My nephrologist is trying to figure out a plan, but in the meantime, my GI dr. is going to add more magnesium to my daily infusions which means I have to be hooked up to the IV pump even longer.  I asked if I could receive infusions like every other day, but that would make my Mg levels wonky and they’d get very low. 🙁


My nephrologist has been trying to stabilize my blood Mg levels with oral Mg on top of the infusions, but nothing is really helping.


The cultures from my j-tube infection grew both gram negative and gram positive bacteria—haemophilus parainfluenzae (not related to the flu…lol) and veillonella parvula…!  My GI surgeon needed to switch me to a different, more sensitive antibiotic.  I had to pack the wound site with gauze for a whole week which was no fun.


This coming Monday is my appointment with the palliative care dr.  Tuesday I see the spine specialist regarding my spinal nerve root cyst.  And Wednesday is my bilateral lumbar sympathetic nerve block for the neuropathic pain in my feet.  It’s gonna be another busy week!  I’ll try to update on all these upcoming appointments sometime next week as well.  Thank you for continuing to pray for me. 🙂



Post written byKerissa

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