Lyme is a Heinous Carousel

Photo borrowed from http://mentalcigarettes.wordpress.com/

Lyme is a heinous carousel ride.  From the start, no matter where it is you begin, there is a cycle of ups and downs that never seems to end.  Many don’t remember even getting in line for the ride in the first place.  There is no memory of a tick, its bite, or the dreaded bull’s-eye rash that would indicate the beginnings of the disease.  A deer tick can start out as small as the head of a pin, and if it were to feed on your scalp or back, you may never know it was even there.  Once it’s had its fill of your blood, the tiny insect will easily remove itself, engorged and enlarged, and move along its happy way.  And so will you, or at least most of you might.

Nasty little bugger.

Each year, however, more and more people like No. 1 are completely unaware that they have suddenly become host to one of the nastiest bacteria around- one that, eventually, if it is allowed to do enough damage, can kill.  But first, this tiny, spiral-shaped bacillus will find a nice place to lodge itself in the body- generally soft tissues like cartilage, major internal organs, and the brain (these bacteria may even go dormant for awhile, happy to sleep and hide in your system until some stressful event in your life stirs them up again).  Some might notice some joint pain, aches or weakness in their muscles, headaches, or other flu-like symptoms and simply write these symptoms off as signs that they are getting older or working too hard.  This was the case with my husband.

The Teal Monstrosity

When we moved into our little house eight years ago, we knew it would take a lot of work to get it the way we wanted.  The previous owners had done some renovating in the kitchen, but the bedrooms were rinky-dink, and the fifteen-foot retaining wall in the back needed some major help. The top third of the brick structure leaned in so far over the backyard, that I was afraid for anyone who might be standing near it.  Two sets of buyers before us had pulled their offers off the table due to the enormity and potential cost of the project.  But No.1 really wanted to get into the housing market before it got any crazier, and, being the super-smarty-pants engineer that he is, he decided he was up for the challenge.

We noticed ticks around the property, on the cats, and even in the house from time to time but thought of them more as a gross annoyance than a personal danger.  And so, we didn’t think much about protecting ourselves once work got started up on the foothill that was pushing its way into our backyard.  During the twelve months or more that construction continued, we never found a single tick lodged in our bodies.  (Obviously, we know now that this doesn’t mean much, but people do ask us this question a lot, and so, no, we never saw the tick or the bite.  Is it possible he was bit somewhere else entirely, like back east or in the Northwest?  Absolutely.

Almost done!

But since he has no memory of ever being bitten by a tick and has been living with them in our midst for the last eight years and working in the grassy, tick-infested sagebrush of the Ventura County foothills for almost two, we believe he was bitten at home.)  When the work was complete, we invited all our family and friends over to marvel at No. 1’s ingenuity and craftsmanship.  Five years later, the new wall continues to look beautiful and stand strong.  Unfortunately, No. 1 did not fare so well.

In the fall of 2005, shortly after work had been finished, No. 1 was offered a new job.  It was a position with a biotech startup company, and a former coworker was eager to bring him on-board as one of the lead engineers.  If the company did well, the potential was limitless, and No. 1 started at his new job excited and honored to try to help design a machine that had the potential to make a big impact in the field of cancer detection technology.  It didn’t last.  Just a few months later, during our Valentine’s dinner date at Chad’s (the same restaurant where he’d proposed nine years earlier), the first symptoms began to surface, looking like the flu.  Looking back, it is likely that the high-stress at work (even if completely exciting) and very long hours brought the spirochetes out of hiding.  But we can’t really blame the job or the extra hours.  The same might happen to a person trying to plan a wedding, finish a degree, or have a child.  Whatever it is that can put extra stress on the body has the potential for shaking things up and creating the perfect habitat for Lyme to come out of hiding and thrive.

And so, without ever realizing it, No. 1 stepped onto the carousel- his least favorite ride of all time.  In real life, even before he became ill, carousels have made him dizzy and nauseous and put him out of sorts for the rest of the day.  The same has been true of his Lyme infection.  In the ups and downs of treating his disease, he has been robbed of his personality, his energy, his self-assurance, and his beautiful smile.  For a time, I was terrified that it might rob him of his life, too.  So miserable was he, I wasn’t entirely sure that he wouldn’t give up this fight.  But he didn’t give up.  He held on to that damn gyrating horse, kept his eye on the horizon (admittedly with the help of some amazing Lyme-literate docs, his family, and myself), and held on for dear life.

The 'Not-Feeling-Good Face' I've come to know so well.

Relentlessly, he has spent the last five years searching for a treatment that would cure him.  He tried one therapy and the next and the next, sometimes moving forward by inches, other times hitting a plateau that eventually led to enough anger that he would punch inanimate objects and (much to my frustration) break them.  Sometimes, after a couple of good days, or even a week or two, he would crash-land so hard, I could see it breaking his heart all over again.  This was not my husband, but who can any of us say we would become when we are robbed of our former, enjoyable selves.  I couldn’t feel what he felt- the headaches, the sleeplessness, the depression, anxiety, exhaustion, fogginess, dizziness, loss of memory, and on and on.  And what would it help for me to get angry with him for being angry anyway?  Instead, I asked what else he had considered trying.  Garlic?  Acupuncture?  Counseling?  More antibiotics?  We tried dozens of therapies and treatments, some very conventional and others very not.

At this point (oh, come on now, at any point), I would say that India is one of those treatments that is ‘very not’.  Some people think we are crazy or stupid for going through all of this and have even gone so far as to say so, and that’s fine.  We can only respond that we have done all the research (two straight years worth) that was necessary for us, and believe (especially now that we’re here) that we are absolutely in the right place.

Today marks the end of our second week at Nu Tech Mediworld, and while we still have several weeks to go before we come home to show off any miracles of our own, miracles are visible here everyday.  In the short time we’ve been here, we have spoken with spinal cord patients who are feeling again and seeing movement in parts of their bodies that they were told would be forever dead.  We have seen Lyme/ALS patients go from barely being able to sit up in bed to walking down the hallway to our room for a visit.  We’ve seen comparative SPECT scans that would blow your mind and will blow the minds of the patients’ doctors at home.  We have met with Dr. Shroff’s own mother who was treated for stroke, is fully recovered and completely delightful.  We’ve spoken to patients who don’t remember what it feels like to be sick anymore.  They are home now, have been for a while, and plan never to come back except to visit the family they have gained while staying in this tiny little hospital, tucked away in a (relatively) quiet corner of New Delhi.

Our Saturday Night Dinner Group at Nu Tech

This morning, Drs. Shroff and Ashish held a meeting in the lobby for all the patients and caretakers to introduce themselves, describe their afflictions and progress, and ask any questions they might still have had about the stem cell treatments they’ve been receiving.  It was unlike anything I’d ever seen or imagined I would see in any hospital in the States.  Everyone was completely open about who they were, what was wrong with them, and what were their losses and gains.  Throughout the meeting, but especially during the question and answer period, there was a sense that we were all in this together (doctors, nurses, patients, caregivers, really everyone), that healing was a team effort, and that nothing was closed to discussion.  We could ask anything (minus how to make our own stem cell soups at home), and the doctors gave everyone ample room and time to speak.  It felt like healthcare should, like actual care.

Tomorrow we enter week number three unafraid that No. 1 will suffer any ill effects, nor that he will go home without major improvements.  We believe wholeheartedly that we stand at the frontier of such enormous medical breakthroughs that the world may soon be a very different place, and we can’t wait.  So, if you have been unsure or afraid for us in the past, we ask you not to be now.  It is no longer necessary.  And when we get home, and can finally step off this damn carousel, you will see that for yourselves.

I am getting my husband back in India, and we are finally ready to get on a different ride.  I’m voting for the Tunnel of Love.  ❤