Catch 22

I had to stop my new round of treatment (IV Rocephin) about 5 days ago because I had too much pancreatic and gall bladder pain. My doctor made me come in for a physical exam a few days ago (she always manage to poke my organs in ways that are ridiculously painful). "Does that hurt, Mona?" "Um, yes, it hurts when you jam your four fingers like a jackhammer under my rib cage into my liver."

Anyways, my lab tests were abnormal and my extreme nausea (looking at food made me want to barf) and stomach problems made it clear that my body was not going to tolerate the new round of IV Rocephin (despite the fact that it helped my Lyme immensely and I was doing so much better on it in just a week).


I keep running into this problem - this is now the 3rd or 4th time in the last 7 months that I've had to stop treatment and my body (mostly my organs and my stomach) will not let me take the treatment. Messing around with your organs is no small matter, and my Lyme doc knows the risks of treatment. I am unusually sensitive to everything, so of course my little body throws tantrums and my organs freak out at many meds even though they are the only thing that help kill the Lyme Disease (for me I mean - I tried herbs for 6 months but after a while, got much worse and needed the big drugs as opposed as I am to them). It's a Catch-22 that I have struggled with a lot now.

Stay on the meds, health improves! Then my organs are in excruciating pain or I have acute pancreatitis or my liver or gall bladder or are in writhing pain and I am hunched over crying from that pain. OR Get off meds, health deteriorates quickly (because the Lyme is no longer being killed and Lyme symptoms rebound quickly), and lay in bed til 4 pm all day with chills, pain, fever, and hopeless that I will never beat this disease and feel like an 80-year old woman forever.

When I first had this issue back in April (extreme organ pain and rejection of meds, and having to go off meds for a month at a time), I basically lived at the hospital - had to see tons of GI and liver specialists, and undergo tons of different tests, an endoscopy (honestly the sedation part of that procedure might have been one of the best hours of the last year - on the way home from the hospital, I kept taking pictures of myself in the car with my phone laughing like a drunkard while my Dad kept shaking his head), a barium X-ray, abdominal ultrasound, CT scan, tons of lab tests, and an MRCP (basically an MRI of your biliary ducts to see if they are clogged). They were all normal for the most part, but every hospital gown I put on and every injectable dye or substance that went into my veins or my mouth was another painful rung on this ladder towards confusion and still no answers. I had a minor pre-ulcer, and then found out I possibly had had PSC (primary sclerosing cholangitis), what can be a very serious liver disease. Of course I read online about it and IMMEDIATELY (Jo, you can relate to this one) thought I was going to die and cried for 2 days. My friend even said she would donate her liver to me. I love my friends. The Internet can be very dangerous at times, and I panicked because if I was going to die in 20 years, well, damnit, I wanted to know! Luckily, I later found out I did NOT have PSC, but it was a good lesson into DON'T GO THERE MONA UNTIL YOU HAVE TO.

Back to the current story....The catch-22 is where I am tonight. Cannot take meds and stomach and organs hurt so bad. Want to barf. Don't know why, but know cannot take this round of treatment. I feel trapped. Like I cannot win. I cannot take the meds. I cannot NOT take the meds. Either way, I feel like shit. I feel hopeless, like I will never get better. Like this is the rest of my life. And then I start freaking out. I start peering into the future wondering if this is my life. It can't be. Can it? But just ten days ago, I was feeling so much better than I had (because of the IV Rocephin), and sure enough my body rejects it and says no.

There is no question here - stopping this medication is necessary because damaging my organs is not an option. But what about my suffering in the meantime until my doctor says I can resume treatment (and try another drug, probably IV Doxy is what she told me today) next round? She has no answer for me..do all the normal detox routines that can help me feel a little better but at the end of the day I am huddled in the fetal position on a Friday night totally confused about my life and what is happening to me. Four steps forward, two steps back, four steps forward, eight steps backward, eight steps forward, 1 step backward, on and on and on it goes for years until you feel like you are in some sort of TORTURE WHEEL.

Mentally, it's unbearable. I tried to call a few friends. Nobody was answering - it's Friday night after all. Maybe I shouldn't bother them - I always feel guilty (even though I should not) about bothering friends with my problems related to Lyme. I then start thinking about Lindsay, my friend with Lyme who took her life, and wonder what would have happened if she had just picked up the phone. Then I start bawling hysterically, crying, and crouch to my knees because I cannot bear the pain of her loss or this disease or the world from a standing view. I keep asking myself why she did it, why she did it, even though I know the anguish she experienced. I am in physical and emotional pain but how could she do it...she told me she never would.

I am in the midst of a big transition and her death came as a horrible shock. I'm still grieving. I'm still angry. I'm still sad. I'm still scared as shit some days like today.

Will I ever be OK again? Dear God, I hope so.