Wednesday, November 28, 2012

Overwhelming Follow Up

It seems like every follow up here lately has left me feeling extremely overwhelmed.  Today's visit was absolutely no exception.  I arrived a little bit before 9 to fill out all appropriate paperwork and was called back at 9:15.  I was in the the PA and my LLMD for at least an hour.  He talked about his most recent ILADS conference.  I love and hate when he comes back from those conferences.  I love it because he usually brings back with him a new piece of information that might help solve the puzzle of my illness.  I hate it because I usually leave extremely overwhelmed by all the information he gives me and usually it involves a change in treatment plans.

The antibiotics are the same.  The days I'll take them - VERY different.  Over the next six weeks, I"ll be on five different pharmaceuticals.

  • "M" will be taken twice DAILY instead of pulsing like we've been doing. no time off unless I'm struggling.
  • "Z" is better taken 4 days in a row in order to get blood levels to a therapeutic level - so "Z" will be taken twice daily Monday through Thursday and I won't take any on Friday through Sunday.  Two weeks on, one week off, two weeks on, two weeks off. 
  • "F" will be taken on the 2nd week of antibiotics - twice daily on Friday and Saturday only.
  • "O" will be taken on Monday, Wednesday and Friday.  Two weeks on, one week off, two weeks on, two weeks off. 
  • "N" to be taken on whatever day I'm taking antibiotics which will be daily (unless I go a "M" respite)

In addition to these, I'll be on a multitude of supplements. There are probably 15 bottles of supplements that I'll be taking 2 or 3 times a day.  There are also about 10 bottles that I'm not sure if I'm supposed to be on or not so I sent an email to my supplement lady.  A lot of them are detox remedies so I feel like I should probably be on them with all of the antibiotics I'll be on, but - adding an additional 10 items twice a day in combination with everything else - seems very overwhelming.

Over the last six weeks, my fatigue level has sky rocketed.  Most nights I'm in bed by 7pm and if I have to work -  I'm rudely disturbed by the alarm at 5.  However if I don't have to work, I sleep a good 12 hours if not more.  One night I went to bed at 6pm and slept until 7am the next morning. I didn't even realize I had slept all night and wondered where my husband was when I got up.  It wasn't until I made my way to the computer and saw AM on the time stamps that I realized I had slept 13 straight hours.  That same day - I napped an addition 3 hours twice and then slept an other 12 or 13 hours the next night.

I've also had spells of dizziness.  Most of the time I attributed it to a new pharmaceutical that I'm supposed to be on to increase my sodium levels.  My Sodium levels are in the toilet again.  So I've got to try to see if I can get those up over the next few weeks before my next set of blood work again.  One set of liver enzymes were elevated from my last set of labs, but not out of the normal range.  Then the other set of liver enzymes were elevated out of range.  We all think it's due to the antibiotics and we're keeping an eye on it. A few of my new supplements are to help support liver function.

Sorry I've been so quiet.  I've had a rough month and I just tend to get really quiet when things get really bad. 

1 comment:

alyson1derland said...

I had the same experience with my LLMD, too. She was full of new ideas from the ILADS conference as well. Lol. Hope you start feeling better soon!