Sassy Style Talk With AJ: Life With a Splash of Lyme, by Anita Roberts

In 2006, I was attacked by a vicious creature in my own home.  I never saw it coming.  One moment, I was an energetic, happy-go-lucky, active, sharp-witted redhead virago; the next moment I was being devoured by a monster, fangs in me, sucking the life from my flesh.  And I almost didn’t see it happen!!  If it hadn’t been for the large mirror placed just so adjacent to my shower room, I might have missed the tiny pinhead-sized bump at my waistline.  I’m busty, OK?  I have to bend at the waist to see my own feet!!

I noticed the bump and assumed it was a pimple, maybe from the rubbing of my pants or tights.  We had just left the warmer season in Morgantown, WV, and I’m an outdoor kind of girl.  It’s very pretty there, and I lived in a wooded area at the edge of a river.  Some evenings, I would have to wait for as many as seven deer to scatter before I could pull into the driveway of my apartment building!  Oh those cunning deer.  They helped facilitate the attack.  I had no idea they were setting the groundwork for this most hideous of incidents.

Over the course of the next few days, I picked at the bump.  I was surprised to find it tough.  Hard.  Not flesh-like at all.   About three days in, I realized with horror that it was a tick.  Not just any tick, but a very specific type: Ixodes scapularis.  Upon my horrified realization at what was feeding on me, I dug the tick out.  Blech!  I had read that you got a specific type of rash and that if you didn’t have that, you didn’t have Lyme disease.  Oh boy.  Is THAT ever wrong!  I had been duped, and deceived.  And I’ve paid for it for six long years.  Only about 50 to 60 per cent of infected individuals develop the rash.  It is NOT a requirement for Lyme disease.  Do not let a doctor sell you that BS.

In fact, Lyme disease, dubbed the great imitator, is often thought to be something else and treated improperly.  Even I was being treated for seronegative rheumatoid arthritis (whilst my body exhibited the symptoms, it did not show up in my blood tests).  The only fortunate thing about that is that I rejected the harder medicines in favor of Plaquenil, an antimalarial that also just happens to have some success against Lyme disease.  The proper diagnosis is often passed over in favor of other diseases like RA, MS, fibromyalgia, depression (oh yeah, THAT old standby when no one can figure you out!!) or other neuromuscular illnesses, in spite of testing negative for all of them.

So, no bulls eye rash, no problem, right?  I went on, believing myself unscathed.  Whew.  Dodged a bullet.  Nope.  I was hit, and my body was on its way to years of misery the likes of which I had never anticipated.  I now know so much more about this condition, and I can tell you that it’s spreading like wildfire throughout the nation.  It’s gone international as well.  So don’t let anyone tell you that “there is no Lyme in (insert country, state, county, here). Lyme is now almost everywhere.  And to be clear, Lyme is just one of a series of infections passed on by ticks.  There are a host of tick-borne illnesses that often travel together, overlapping with symptoms and ravaging the bodies of their hosts.  The most common infections associated with ticks are: Lyme borreliosis, Babesiosis, Ehrlichia, and Bartonella, or cat scratch disease.  Bartonella is the only one of the unholy grouping that I definitely don’t have.  Lyme and Ehrlichia are certain.  Probably Babesia as well, but that one is nearly impossible to even test for.

And at this point, almost no one cares to engineer tests that actually and accurately show the presence of these illnesses.  The most common test, the western blot, is massively inaccurate and inadequate. For the record, I am a textbook case of Lyme disease, tick present, and classic progression of symptoms, and my western blot has come out as equivocal, negative and positive.  The most recent test popped up as a positive after I began treating the Lyme again.

Lyme is tricky.  It hides in cells, burrows in and walls itself off, but wreaks havoc and causes the immune system to go on full alert, causing high inflammation levels and tons of damage to multiple systems in the body.   The body knows something is very wrong, but the stealth attack of the spirochetes confuses it, confounding its ability to tell friend from foe, so the immune system decides to “kill ’em all and let the liver do the sorting!”  The Lyme burrows into the actual structure of cells in the body.  Deep into crevices, in joints, organs, even into the brain.  The immune system kills cells, but the spirochetes have a defense mechanism that regular cells don’t have.  They can throw up a cyst wall around themselves, nestle in with popcorn and watch the fireworks from the safety of their enclosure.  Then, when it’s a good air quality day, they pop out, reproduce and a new little bunch of hell is unleashed into the already beleaguered body.  So, in its blitz attack, the body destroys all kinds of important cells and functions, but leaves most of the Lyme hale and hearty.

Eventually, left untreated, Lyme disease may occasionally resolve itself if the infected body has a strong enough immune system.  And it’s a rare body that can actually do this.  Oh, they mention it in the books and websites.  But that scenario is by far the least likely to happen.  For someone like myself who started the whole situation out as immunocompromised: definitely not gonna happen.

So, what exactly does happen when a body like mine gets Lyme disease???  It takes about 48 hours for the Lyme to really set in and be racing through the veins and into the system.  Now, each person has their own unique experience, but there are some typical experiences that most of us have over the course of the first five months after infection.  Within a month or so, you will get sick.  Massively, gravely ill.  Pneumonia sick.  I was desperately ill and it took almost three courses of antibiotics, and prednisone to get me back to near normal.  Only, I never returned to normal.  It’s almost certain that rashes will spring up somewhere on the body.  I got an irregular ellipse-shaped rash down on my calf that lasted for several months.  Then I rapidly developed strange dermatitis type reactions on my hands.  The offending areas would wrinkle, peel, then heal.  Then start all over again.  Over and over and over.

I never did get my energy back, either.  In fact, the advancing fatigue was crushing.  Slowly, a deep lethargy crept in and I found it difficult to even muster up the energy to cook or clean.  I would often just sit and stare vacantly, wondering what was wrong with me.  I find the fatigue to be one of the most disturbing parts of the whole experience as I was previously filled with nothing short of boundless energy.

I developed a foul, sewer-like stench in my nose and a taste in my mouth that made most foods unpleasant.  I began to have difficulty finding comfortable positions on the couch or while trying to sleep.  I didn’t know at the time, but my tendons and muscles were under attack and my whole body structure was changing with the damage.

I became confused and foggy-brained.  This is a common problem with thyroid disease as well, and even though it hadn’t been one of my symptoms before, I just attributed it to that cause.  Soon, though, I was unable to remember simple things. Words, people’s names, details I had just been told.  I would mean to go somewhere like the grocery store and end up somewhere else by mistake.  It was jarring.

I began to have difficulty sleeping, difficulty straightening my legs out.  I could no longer work out and couldn’t understand why.  My balance became compromised and I became very clumsy.  My muscles began to atrophy.  Just five months prior to this, I could bench press 125 lbs.  Suddenly, I could barely open doors!  My eyesight began to deteriorate.  It had been perfect.  I developed large dark floating specks in my eyes, I could see them swimming in there like little threads.  I still have them.

Then, suddenly one day, my joints seized up and the rheumatic-like joint damage was well underway.  My knees went first, then my ankles, then my elbows locked up and it spread from there into my wrists and hands.  I had difficulty breathing.  My heart began to have odd syncope and racing or pounding.  My stomach began to give me tremendous amounts of difficulty.  This is the primary list of symptoms, but is by no means comprehensive.

Having the Hashimoto’s thyroiditis set me up for a number of complications, in and of itself.  I knew I had some issues, but little did I realize I now had the whole subscription.  It’s been assumed by the doctors that my already challenged immune system only aided and abetted the Lyme.  About 11 months after infection, I was finally diagnosed.  I didn’t have insurance, so I was put on the cheapest regimen possible and hoped for the best.

A few months later, myself and the man who is now my husband trekked off to China to start our life together in the exotic South China region.  I tried my best to keep fighting the Lyme without assistance from a doctor but it turns out that I failed.  Half of the meds sold in that area are either fakes or expired.  And no one knew anything about Lyme disease.  During that time, I managed to grow an alarming amount of candida as a result of the medicines.  I slowly deteriorated until in 2009 I had four surgeries to enable me to walk again.  This year marks the 6^th year that I have been ill and in pain.  Combined with the thyroid difficulties that were only exacerbated by the Lyme, I was in sad shape.

We have recently moved back to the US and I’m living close to Seattle, WA.  I have stumbled onto an amazing general physician, whom I adore, as well as a specialist in chronic disease and Lyme disease.  Between the two of them, I’ve had an intense round of lab tests done that both prove I still have Lyme disease and that my immune system is decimated.  In fact, my natural killer cells are at critically low levels.  I have access to information and assistance and am now on a program that is difficult, grueling and is actually beginning to work.

It’s been just about three months since I began a hard-core level of treatment.  I take thousands of milligrams of antibiotics, antifungals, antimalarials, along with adrenal support herbs, super doses of vitamins, probiotics, natural anti-inflammatories,  and pain meds when needed.  I avoid gluten and most dairy, save yoghurt and kefir.  I’ve gone on a partial liquid cleanse diet and am managing to keep the candida to a minimum, as well as slowly lose weight.  I am able to do up to 18 minutes of exercise at a time now, and have noticed that my leg muscles are beginning to come back.  In fact, I can sometimes walk up the stairs almost normally.  The pain level, which had been a constant 7 to 9 out of 10, is now often as low as 1 or 2.  I am now able to actually clean the apartment, do laundry and often cook a meal in the same day.  Other days, I can’t get out of bed.  Those days are becoming fewer as the weeks go by.

It’s been a long road from that morning in West Virginia, to the surgeries, and to last weekend and my trail walk with Dean.  I’ve often thought of what I would do if I could only go back to that first morning, there in that bathroom.  But, in the interim, I’ve married a wonderful man, traveled around the world scuba diving and hiking in exotic locals and meeting incredible people.  I’ve managed to have an incredible life and series of adventures in spite of this illness, and I see no reason to let it decide my future or dictate the terms.  If discipline and education will help me win the battle for my health, then that’s what I’ll pursue.  So far, I’m still in the driver’s seat and cruising right along.