My Lyme

Upon seeing this blog entry my wife is likely to sigh and roll her eyes, not that I blame her.  As both she and our son have also had Lyme disease, it has hijacked a significant portion of our lives.  We just want it to go away, but it won’t.  I’m not looking for sympathy, though it is a bit cathartic getting this out there.  I am writing because similar stories by others have helped me cope.  They confirm that others are dealing with the same symptoms and frustrations and I’m not just the complaining nut case I sometimes feel like. Those stories also help me better understand the disease so I can best manage my own treatment.  Maybe my story will help others.

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It was a sunny and brisk Sunday afternoon in mid-September about eight years ago. I was out with my camera at our community’s sports fields when I first noticed feeling a bit off. “Oh great”, I thought, “I’m getting sick”.  Sure enough, Monday morning I woke up with aches and chills. The dreaded swine flu had arrived in the U.S. and I figured it had found me. News reports said healthy adults had little to worry about and just needed to ride it out.

The following Thursday around 2:00 AM I woke my wife and asked her to drive me to the hospital. Something was seriously wrong.  After two nights of drenching sweats I felt like someone was driving a giant screw through my head.  It couldn’t be just the flu. Forty five minutes later we were at the emergency room and a doctor saw me quickly.  He drew some blood and disappeared.  Upon returning he simply looked at me and said, “You’re not going home.  Your liver enzymes are off the chart.”

So began my fight with Lyme disease.  You won’t hear this from many Lyme patients, but I consider myself somewhat fortunate.  During the three days I spent in the hospital that week I was under the care of an infectious disease doctor who had seen this before.  That next morning she told me she didn’t know what I had but was almost sure it was tick borne. She immediately started me on intravenous Rocephen, a powerful antibiotic that has been effective against Lyme and many of its co-infections.  After a battery of tests, they sent me home with a thirty day supply of oral doxycycline as a follow-up to the Rocephen. I was already feeling much better and assumed that was the end of it.

Of all the tests, only one came back positive.  It showed slightly positive for Borreliosis (Lyme disease), but with low confidence.  Years later, based on a comparison of my symptoms with the continuously-growing body of clinical data, I realized I’d probably contracted both Lyme and Babesiosis. It wasn’t a surprise I’d been bitten by a tick, as we lived in southeastern Pennsylvania (or ‘Lyme Central’ as I now sometimes call it) in a suburban neighborhood surrounded by fields and hedgerows. Deer ticks were everywhere and I’d pulled more than a few off myself over the years.

What was a surprise was getting sick again eight months later while on a business trip, this time complete with a red rash over one-third of my body. My primary care physician listened to my new symptoms and thought I probably had Lyme again. Whether or not I had gotten another bite (likely, given where we lived) or it was a resurgence of my initial infection (also likely) doesn’t really matter. This news marked the beginning of my never-ending roller coaster ride that is chronic Lyme, post-treatment Lyme disease syndrome (PTLDS), or whatever else they might be calling it.

There’s no denying that Lyme sucks.  It’s an insidious disease that is reaching epidemic levels around the world, and we have just barely scratched the surface in its understanding.  Hard to diagnose in time to treat it effectively, its symptoms can mimic so many other diseases that victims feel like full-blown hypochondriacs.  These thoughts also pass through the minds of family and friends.

Since existing tests for Lyme are woefully inaccurate and inconclusive, and may not show positive until months after contracting the disease, the diagnosis is largely a clinical one.  It is very much a diagnosis of omission – if you’ve checked everything else that might be causing a symptom, it might be Lyme.  Do this for enough of the myriad of odd symptoms, and the probability increases. I’ve personally consulted neurologists, rheumatologists, orthopedists, audiologists, and optometrists for symptoms that ultimately came down to Lyme.  People have been diagnosed with MS, ALS, fibromyalgia, chronic fatigue syndrome, and Alzheimer’s to find out – sometimes years later – that it was Lyme. Sometimes they never know for sure, and that may be its worst aspect. Even when you know you have Lyme, you’re always wondering if any given symptom might be caused by something worse you don’t yet know about.

Though there are many similarities, Lyme affects everyone differently.  It depends on their overall health, genetics, how long it has gone undiagnosed, and what co-infections they might have also contracted.   My personal list of symptoms attributable to or exacerbated by Lyme over the years includes:

  • Flu-like fever, chills and aches (Yup, just like that).
  • General feeling of malaise (Didn’t want to do anything).
  • Fatigue (So bad I could barely get out of bed).
  • Red rash covering one-third of my torso (That was pretty).
  • Tendinopathy in both shoulders.
  • Finger joint pain (To the point I could barely hold my camera).
  • Joint crepitus, mostly in the neck and shoulders (Everything creaked and cracked).
  • Brain fog (Also called Lyme brain – cognitively ‘slow’ with difficulty concentrating).
  • Tripping over words (Not being able to find the right words or get them out).
  • Tinnitus and hyperacusis (Painful sensitivity to sound).
  • ‘Odd’ body odor (Yeah, this is a strange one, but real).
  • Jitteriness and decreased fine motor coordination.
  • Vertigo and dizziness (What it sounds like).

These symptoms have continuously waxed and waned depending on my treatment and who knows why else.

I regularly research what’s new in Lyme knowledge and treatment, hoping for that ‘ah ha!’ moment, but based on the current understanding of the disease I don’t expect to be ‘cured’ anytime soon.  It is still an ongoing battle.  I am, with the help of a good doctor, doing a pretty good job of managing it, though.  I feel about 85-90% most days, am able to function, am very active, and am not spending a fortune on my treatment.  Thus I do consider myself one of the luckier ones.  I basically knew what I had when I first got sick and have been able to control it.  There are many, many people out there who are not as fortunate.  In the worst shape are people who have traveled from doctor to doctor with their long list of seemingly unrelated symptoms, and yet go undiagnosed for years.  Some of these doctors are simply not familiar with Lyme, and some still hold the outdated belief that there’s no such thing as a chronic form of the disease.

My own treatment includes oral antibiotics (and try to keep those to a minimum), supplements to support my immune system and overall nutrition, eating as healthy a diet as possible (which includes severely limiting – if not eliminating – sugar and all other simple carbohydrates), and exercising daily (especially aerobic exercise).  Note that the last two on this list are good advice for everyone, not just sick people.  The research indicates that the borrelia bacteria loves sugar and hates oxygen.

The good news, if it can be called that, is that the increase in reported cases and the associated publicity is resulting in an increase in research for better tests and improved treatments.  We all hope these will be found sooner than later.  In the meantime, in the words of Kathleen Spreen, DO, we should “Never give up.”

-Russ

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