30 June 2011 ~ 9 Comments

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 6th 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.

 

9 Responses to “Sassy Style Talk With AJ: Life With a Splash of Lyme, by Anita Roberts”

  1. Pam 19 July 2011 at 10:57 am Permalink

    Thanks for sharing, Anita. You are brave and I greatly admire your positive attitude toward life. I’m enjoyed getting to know you via FB. I feel your pain somewhat as I suffered from severe eczema since I was a child up until my college years, and have had a couple of bad years due to Graves’ Disease. Glad we can help educate and advocate for patients’ rights and empathy. Keep fighting the good fight! xoxo

    • anita 19 July 2011 at 6:05 pm Permalink

      i feel the same way pam. very glad we met. it’s been an exchange of fun and support, and i look forward to knowing you for a long time! our support and information sharing is what will make us stronger and healthier! so we’ll fight the good fight as a team. rock on! ( to NKOTB, of course!)

  2. Pam 19 July 2011 at 9:26 pm Permalink

    And A Perfect Circle! 🙂 Three cheers for Dean as well! I just read your other post about how supportive he’s been. Oy, I meant “I’ve” not “I’m” above. Darned brain fog!

  3. Jan 18 August 2011 at 1:35 am Permalink

    Oh Anita,

    What an incredible cautionary tale!!

    I’ve heard that the co-infections can really nail a person. How dare they not have accurate tests for this?

    How much ‘evidence’ do Evidence Based Binary Thinkers need, anyway? Or is Lyme et al an ‘all-in-your-head’ anecdotal kind of thing that keeps ‘conspiracy theory types’ occupied?

    And now there is a new Erlichia strain found in Wisconsin and Minnesota I believe. The NEJM just published this in August, 2011.. thanks to the Mayo Clinic. (Its never going to end). arrggghhh!!!

    Thanks so very much for writing this, Anita.. love love love your style!! 🙂

    (Sarah, you’re the best, too!) xx

    Take care,

    Jan

    • Sarah Downing 18 August 2011 at 12:58 pm Permalink

      Thanks for commenting, Jan. All too often it seems that Lyme is either misdiagnosed or diagnosed much too late. It’s very sad when you think what long-term impacts it has on Lyme sufferers such as Anita. I once read something on Wikipedia about plans for a vaccine, but then I read that they weren’t bringing it out because it would be too expensive … WTF?!!!

      Take care of yourself and keep up the good work, Jan! I’m happy to have Anita on board. Her articles are always a pleasure to read:-).

      Love,

      Sarah

    • anita 18 August 2011 at 7:08 pm Permalink

      hello jan, and thank you for writing. cautionary tale, indeed, eh?? whew. and yes, they’re paying enough attention now to be discovering all kinds of odd little critters, some slither, some twirl, some roll thru our bodies, cells and blood and just ruin us. and it’s an odd topic, but it’s one we’re bound to see explode in the next 5 years as the lyme literate docs believe as many as 200K are infected, half of those improperly diagnosed or clueless about what’s wrong with them.

      many have a story like mine, doctors swearing they don’t have lyme but insisting on treating them for other illnesses they test negative for, because that’s what makes the doc more comfortable! i started plaquenil and felt better within two weeks. then hit a wall with it and began to backslide. they refused to believe it could be lyme in the face of obvious proof. so, theres a belief in lyme as an illness, but a LOT of politics clouding it’s diagnosis, it’s etiology and it’s cure. and with each year, startling new discoveries are made that the main lyme board either squashes or they literally prosecute the doctor and take away their license. these are the docs who actually go off label and have tremendous success, with patients flying in from all over the world to see them. it’s literally a crime. but the whole notion of treating chronic, long standing lyme with 3 seeks of doxycycline is bunk. it doesn’t work. i have had many evil little fantasies about infecting that board (um, half of whom receive salaries from insurance and pharma companies, btw. conflict of interest much???) and letting them writhe under the misery of infection, and THEN see what they come up with. we’d have research, we’d have proper tests and a vaccine. you betcha!!!!

      until then, we keep fighting and striving. and telling ppl about it. i don’t want anyone else to get this!

      • Sarah Downing 18 August 2011 at 7:16 pm Permalink

        Hey AJ,

        I was just wondering about your statement about the three weeks of Doxycycline not working. My previous doctor found that my Lyme antibodies were ever so slightly elevated and so he did put me on a 3-week course of the antibiotic Doxycycline. If I understand you correctly, you are saying that Doxycycline doesn’t work for those cases where the Lyme has already set in, but if diagnosed right at the very beginning the antibiotics should indeed do the trick. I’m still skeptical as to whether I even had Lyme because I never even found a tick or a rash, although I know that the rash isn’t always present and that ticks can probably fall off unnoticed. That said, this was last December and I seem to be doing OK now.

        Love,

        Sarah

  4. anita 18 August 2011 at 7:29 pm Permalink

    like i said, for deeply entrenched, highly symptomatic cases of lyme, no, doxy for 3 weeks is insufficient. and you know if you have lyme. it’s not really one of those “gosh, i’m stunned, i had no idea i was sick” kind of things. i’m more impressed that he just went ahead and did the doxy! that’s commendable, actually. there are so many docs who don’t get it, and would rather let you get really sick before they would treat you, not understanding that at that point, treatment becomes super challenging. once you’re displaying symptoms of mid to late stage lyme, then your likelihood that simple abx will set you to rights becomes significantly less with each passing month. you might have had some kind of parasite tho. or none. like i’ve said before, the lyme tests are notoriously unreliable, and often wrong. i’ve tested negative while in the worst phase of my infection, and positive when i felt better. weird. so, i was diagnosed on a combo of test results and clinical observation. and then there’s the way my body responded to treatment, that also fits the lyme etiology when abx are introduced. you may have had erlichia or bartonella, early stages and responded fine to the meds. or not. shrug. it’s a big crapshoot at this point. which sux.

    • Sarah Downing 18 August 2011 at 7:35 pm Permalink

      Hey Anita,

      Thanks for clarifying. I wanted to ask this for my own piece of mind, but also for those of our readers. Yes, I do think with Lyme it’s better to be safe than sorry. I had suspected the test to be unreliable at the time, but I guess I will never really know. I also had the impression I’d have known by now if I had it because I know all about your horrible symptoms and how debilitating it can be, but then you know I am a born worrier! The flipside of your diagnosis is that you have become pretty much an expert in Lyme disease and now you can raise awareness and help others:-). That said, I wish from the bottom of my high that you didn’t have to suffer as you do.

      Love,

      Sarah


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