Sunday, December 6, 2009

Ticked Off: Installment III of my Lyme Disease Journey

Things have been majorly sucking here lately. I am being treated for suspected Bartonella, a co-infection of Lyme Disease. One of the reasons that Lyme is so debilitating now, versus 15-20 years ago, is that most people who get infected with Lyme now also are infected with 1-8 other viral or bacterial co-infections. Your immune system can't easily fight off that many assaults, so it goes haywire, which is how you end up with a perpetually ill patient like me. Additionally, I've been diagnosed with intestinal candida (yeast); we're working on how to treat that since the fungicide the yeast is resistant to is severely contraindicated with another pharmaceutical that I take. I have been feeling very down, angry, and cynical. I'm totally pissed off that I'm 33 and have been knocked on my ass sick for so long. My husband (and several other people) gently suggested that I might be here to be of service to others. My response to this is basically, "Fuck service! I don't want to be of service in this way. This really fucking sucks, and I'm tired of it. Tell me my life isn't merely to be an example to others." I still feel that way most of the time, but I think it would be a real pity if someone suffering in the same way I've been didn't get a chance at healing just because I'd rather write about vampires than the rough stuff I'm living with. So, in the spirit of service, I'm getting back to telling my Lyme Disease journey. See Installments I and II if you missed them.

IV Rocephin=Good

When I reflect on how sick I was at the time my doctor diagnosed my Lyme just before Passover in spring 2007, it feels like a hazy, bad dream. I could not wash my hair, because I couldn't lift my hands above my chest level. I don't know what I would've done if I hadn't been married; I have no family here whom I would feel comfortable showering with. I could not chop a vegetable. I couldn't always sign my name; I certainly couldn't write any more than my name without excruciating pain. I could not type. I could not turn on my computer without feeling an electric shock traveling up my arm, nor could I push an elevator button for the same reason. I couldn't open the door to a commercial office building because I was too weak to do so. My arms burned deeply all the time, and I felt like I was being tortured. I had constant numbness and pins-and-needles feelings.

I almost wept with relief when I finally got a diagnosis. My disease had a name, and it was treatable! I wasn't really looking ahead to a time of wellness; I just dreamt of some pain relief. My doctor first prescribed a month's worth of oral doxycycline, a really common antibiotic that I used to take for acne. That plus acupuncture got rid of the worst of the pins-and-needles sensation, but nothing more. I knew that intravenous (IV) antibiotics were usually needed to treat Lyme as severe as mine, but I was shocked when I had to suggest it to my neurologist. He shrugged, "You want to try the IV? Sure." Typing that kinda takes my breath away; it's one of about 1,500 health care moments that I can identify that if I wasn't who I was, with the resources (including chutzpah) I have, I would have a very different life than I do now. I will do a whole post on this some other time; I had such a moment earlier this month trying to get information about when to stop my drug for my digestive study.

Anyway, eventually I'm sure I would've sought a second opinion that would've led me to a truly Lyme-literate doctor who would've prescribed IV antibiotics, but any delay would have been detrimental. In hindsight, I wonder if I needed more than just a month of IV meds.

I had to get a peripherally inserted mid-line catheter placed in the vein in the crook of my arm (see here for drawing). It was a thin, plastic tube that snaked way up my arm, came out of the vein and was covered by a thin piece of plastic to keep it sterile. I remember driving to Reston, VA to have it placed; the nursing company would come out to my house for other care, but told me in no uncertain terms that I would not want to clean up the mess in my home that would result from placing this line. The nurse was very skillful, but it hurt like hell; yet, at the time, I distinctly remember feeling exhilarated, thinking it might be "the trick" to get me well. Sitting here two-and-a-half years later, I can see how naive that was, but I'm grateful for that innocence because it would've crushed my spirit to not have it.

I had a home health nurse who came every week to change the dressing covering the midline insertion site and check for infection. She showed me how to sterilize the cap, flush the line with saline, and hook up the IV Rocephin that was shipped here weekly from the nursing company's pharmacy and that was stored in our refrigerator. I'd be lying if I said I didn't like having the midline or using the IV every day; medical stuff is cool. When else was I going to get the chance to give someone an IV? My friend Dionne, God bless her, knit me a little cuff to keep the long line from blowing in the breeze; I could tuck the plastic tube up into the cuff when I wasn't mainlining. That was good because any time that tubing got caught, it pulled painfully at the skin in my arm and I lived in fear that I was accidentally going to rip it out.

Four weeks of the IV Rocephin had a noticeable impact on me. The pins-and-needles and electric shock sensations subsided. A lot of the other details of when I saw improvements have escaped David and me; was I able to wash my hair again immediately post-IV, or later? Who knows. I couldn't write well enough to take notes, nor did I care to. I lived one day at a time, trying to find a way out of this pain. I was heavily sedated by narcotics, which took the edge off the pain and made me sleep.

There was a lot more to healing; I need to go to sleep but will remind myself here to write about: Cathy, physical therapy, cranial-sacral therapy, etc. Good night.


Anjali said...

My husband found out he had Lymes a year and a half ago. His legs kept filling up with so much fluid, he couldn't bend his knees or ankles. Walking and even driving was difficult.

To make a long story short, my husband's doctors did not think he had Lyme's. The test was positive, but still they were nonbelievers. My husband wrote himself a two month prescription for oral antibiotics. His swelling cleared by the middle of the second month and he's been symptom free since. If he hadn't had treated himself, I doubt he'd be walking today.

I hope you have better luck with treatment and results.

Syrinx said...

Thank you. I heard on a podcast today of a man who had Lyme in the '80s but couldn't get diagnosed and treated. Now he has myelinating neuralgia; his myelin sheaths are being stripped away because of the Lyme 20 years ago (they've since confirmed that he's remain infected). I'm so glad that oral antibiotics helped your husband; that's' great!

S said...

"Tell me my life isn't merely to be an example to others." Sweetie, then what would you have it be?


Rick G said...

Thanks for the post...... I guess I'm at the FUCK THIS phase. I read blogs everyday in hopes of finding one that tells a story of being completly healed.

Sarah said...

Rick, I get the "fuck this" phase. Please keep reading, and maybe we can cheer each other on. I have a post in the works about Lyme politics. Feel better.

Steven said...

Thanks Sarah, for the detail and honesty and anger. Keep fighting.

Anonymous said...

I know a whole family that cntracted Lyme's Disease. The mother who was paticular freind of mine could barely eat, brush her hair, or drive for fear of getting lost. After a several unsucessful courses of antibiotics the whole family did an extensive detoxing program and hyperbaric oxygen therapy in Larkspur CA. They are now completely "non-symptomatic" i guess. So there seems to be some light at the end of the tunnel.