ROBIN'S LYME JOURNEY

I grew up in the Lyme Connecticut area.  In fact, my family originally settled the town of Old Lyme, where this story all begins.  As a child playing in it's woods in the 60's and 70's, I was bitten by many ticks;  I was infected long before anybody realized how such a tiny creature could destroy one's life.

As a child, I recall laying in bed, crying at night with severe limb pain.  The doctors dismissed it as growing pains.  During my adolescence, they called it "bursitis" and treated me with steroid injections, which, we now know, harmed me more than helped.

In my late teens, I underwent two exploratory surgeries and was sent to Yale Medical Center where I was part of an experimental program for unexplained chronic pain.  I received no answers and without  diagnosis, was sent to a psychiatrist and told it was all in my head.

As the years passed, I was shuffled from doctor to doctor, each with a different diagnosis; most often being told it was psychosomatic but some said I had fibromyalgia, lupus, chronic fatigue syndrome, even MS.  I had to work hard at being healthy, went on a macrobiotic diet, drank Chinese herbals teas, had weekly acupuncture and practiced Tai-Chi but I came well enough to live a fairly normal lifestyle, working, traveling and even enjoying kayaking, skiing, scuba and other extreme sports.  I left college twice for medical reasons, but finally after eight years, graduated with a B.S. from Univ New Haven.

In 2001, now living in Lake Tahoe and after a spider bite, I became acutely ill; my previous symptoms returned with a vengeance  and I was finally diagnosed with Lyme Disease.  The doctor that diagnosed  me, treated me with 30 days of zithromax, and I additionally had IV H202 treatments; All symptoms seemed to resolve completely.

Six years later and now living in S. California, but on vacation in CT, I found a tick on my leg after crabbing in the beachgrass with my son.  I reported the tick, and turned it in to a state agency, where they confirmed that it was a fully engorged nymph deer tick, from a highly endemic beach.  A local clinic suggested a "wait and watch" approach given my multiple drug allergies.  They told me what to look out for so when six weeks later (and now back in S. Cal) I became extremely ill for a period of about two weeks, I got a prescription.  I became so ill immediately after the first dose and chalked it up as a drug allergy.  My symptoms cleared quickly without any drugs so I thought I was okay.   I believed if it were Lyme, my symptoms would have persisted longer. But within 6 months my health took a bad turn; first fatigue, then very rapid weight gain, swollen joints and memory problems all leading me to suspect I had been reinfected with Lyme Disease.

I immediately went to my dr, told him of my history and my most recent tick bite but he insisted there was no such thing as Lyme in Cal.  I know that to be untrue, but still stressed I had been bit in the most endemic area of the country, the absolute epicenter.  Still, I was dismissed, told I was "anxious" and simply given antidepressants.  It had become clear that the HMO doctors would be of no support, so I sought out a local ND, one from back east and familiar with Lyme, who agreed to work with me.  He drew and sent my blood to IGENEX labs in California, known in the Lyme Community as the single best for testing for tick borne illness.  My test results revealed a positive Babesia microti infection, and very likely chronic lyme, although equivocal.  At the time I was totally ignorant to the politics surrounding Lyme and naively thought now that I had a positive test, to get treated and quickly get back to my life.  Little did I know what little I knew; I could never have imagined what lay ahead!

I found myself having to pull over to take naps or shutting my eyes for a moment or two at red lights.  My knees became severely swollen.  I began using a cane, then a walker.  Then I started forgetting things, like which side of the road to drive on, my phone number or address, even the names of my pets!  I gained 40 lbs in a matter of weeks!  Some days I was fine, other days I felt fluish; I experienced vertigo and double vision.  When the tremors started, I knew something was seriously wrong.  The neurological symptoms were disabling, very strange, and I was terrified.

I will never forget October 13, 2008.  I had just arrived at work when my entire body began buzzing and shaking with tremors.  I felt like my brain was untethered and bouncing around in my skull, causing debilitating vertigo.  I went to a co-worker, simply said, "I need to leave, Now!" and never returned.   That would be the last day I would ever work.

 I would lay on the couch, covered in blankets (in S. California) with a winter coat and hat on,  my teeth literally chattering.   I spent almost all of time between a hot bath, uncontrollably shaking, or sleeping for as many as 15-20 hours a day.  I was scared....I was certain I was dying.  Weird brain sensations made me think I was going mad but yet I was aware of it.  I felt impaired, almost drunk most of the time and at times my speech would slur.  I was taking no medications at the time.  My head felt swollen and hurt so bad I would pack it in ice.  Still, at times the vertigo got so bad, I just lay still for hours without moving a muscle, holding on to a piece of furniture or the sides of my bed.

I could no longer read more than a paragraph or two without falling asleep....instantly.  I could hear myself snoring and hear things around me but I was asleep...I would take a little nap, then wake and read a few more paragraphs and sleep again.  My brain actually hurts when I use it to think, problem solve or try to calculate figures, like balancing my checkbook.  It feels so swollen, like it is going to explode; those are the times I stay awake all night in fear I won't wake up.

My limbs became so numb that at times they became paralyzed and I could not move.  Other times I couldn't speak.  The worst was my over-sensitivity to noise.  Loud stores on a bad day became a nightmare....I could hear every single voice all at once.  Walking down the aisle I got tunnel vision and literally become lost....all I wanted was to find the front of the store and leave and sometimes became totally disoriented.  So, I no longer went into a grocery store, and avoided public places at all costs.  Even joining the family at the dinner table can be a "trigger" if more than one person speaks at the same time.  I can no longer listen to music to this day; it excites my brain and I become very confused, disoriented and dizzy. Many many more symptoms began to surface ranging from cardiac to psychiatric;  at last count I was now suffering from over 100 symptoms , many of them disabling just by themself .

I lived in total recluse, even from my mother in the next room.  I wore custom made earplugs,  dark blankets hung over my windows, I could not speak on the phone or receive visitors.  Even the sound of a fork hitting a plate could "put me down" for days.  I lay curled in a ball in bed, for days, crying and begging to God; Begging God to take me , begging God to save me and begging God to forgive me if I had to take my own  life .

Many days, I couldn't open my eyes.  My sister, who lives just two blocks away, I was too sick to visit.  Even normal conversation was difficult on a bad day.  I have gone from a very outgoing, social, enthusiastic person, to a shell of a person, scared to even leave the house.  I have lost all but a few friends; I can't tell you the last time I even was up to going out for a cup of coffee, let alone a movie or dinner; years now. To have to watch your friends continue with their lives when yours has stopped is not easy . While you would never begrudge them for living their lives , it reminds us just how much we're missing . With social media sites like Facebook , we can "keep up "with the world without being in it; perhaps a mixed blessing for although it helps us keep in touch it reminds us how out of touch we really are with the real world .

The last six years of my life are somewhat of a blur and much of it I cannot even remember today..  I have actually blacked out many months here and there, perhaps as a coping mechanism , and looking back today, seriously do not know how I ever survived.  I remember begging my family to let me go, begging for their forgiveness as I planned my exit.  I was obsessed with suicide, and thought about it night and day.  It was the only realistic "fantasy" with a happy ending; an end to the agony.   I tried on three different occasions to say good-bye to my son; I couldn't do it.  Then came the miracle, the impossible answer to the prayer I had been repeating over and over for years; another way out.  A gift from a friend that would ultimately save my life.  Enough money to get myself to a clinic and get healed!!  The treatments helped tremendously and while I am still unable to return to work , it allowed me to get to "the next level"  and now I am learning to Live with Lyme rather than die from it.

As I look back, what's so puzzling is how I could be so very sick and many people didn't even know for the most part.  I can't tell you how many times I have heard "but you look fine" or "you sound great"!  No bandages, no scars...I guess that's why. They say pain is invisible; so are the many symptoms of Lyme.

These many invisible symptoms of Lyme lead others to disbelieve those who are suffering, minimizing the severity of the disease and labeling them as hypochondriacs.  I know I am far from alone in the "social death" I had experienced as a result.  Outwardly I appeared to be fine, while inside my body was shaking with tremors, my head spinning with vertigo and the brain fog made it impossible to follow even a normal conversation. Still worse, doctors would report "no visible sign of acute distress" in their notes, having seen me for a total of ten minutes in a "controlled (quiet) environment", which they then would forward to Social Security.  I am on my 6th appeal for disability as a result, and have been without any income whatsoever since October 2008.

What's so disturbing is that I sought help by seeing dozens of doctors, from primary care to infectious disease, rheumatologists to neurologists.  Even with a known tick bite, a history of Lyme Disease, positive titers and classic text-book symptoms, I was denied a diagnosis and therefore appropriate treatment.   That delay is responsible for this turning from a very treatable condition to a chronic and disabling one and has cost me a decade of my life.   It was only by my insistence and perseverance, that I did finally get the diagnosis, and find someone to treat me, though I have doctors still that insist "it absolutely can not be Lyme".  This is where the problem lies, and this ignorance (or conspiracy, depending what you believe) is costing people their lives and society more money in the end.

In talking with those unfamiliar with Lyme, I have found the average person to be blind to the many roadblocks Lyme victims face.  The day I packed up the few belongings that would fit in the car, and along with my son and pets, was forced to leave our home and with nowhere to go, drove to the park, homeless, scared and without a clue what to do next, was a day I am sure I will never forget.  For months after, we bounced from donated hotel rooms and friends sofas, until my son graduated H.S. and then sold the last of my family jewelry for plane tickets back east to stay with my elderly mother.  It was bad enough going homeless, selling every last possession, but now to watch my mother suffer financial ruin herself because of me was more than I could bear.

What angers me most is the way Lyme patients are treated.  I have been thrown out of doctors offices, merely by mentioning the word Lyme…and more than once.  Doctors just don't want to hear it.  They are turning their backs on us and we are suffering even more  because we have nowhere to turn.  We are being forced to become our own doctors,...our own advocates.  And then are ostracized for it, accused of being "fixated" and told we have a mental disorder as a result.  I have been labeled as "difficult" and "argumentative" by several I.D.S.A. doctors merely for going before them, presenting them with my medical evidence and asking for help to get well.  My current neurologist  admitted to me, finally, after a year with no other possible explanation, that I most likely do have chronic lyme yet  refuses to put it in writing.  She simply shrugs her shoulders and sends me on my way, along with a number of prescription anti-depressants.  My last MRI revealed lesions on my brain, they admit it verbally, yet won't write it in the MRI report. And IDSA doctors still insist I am suffering from depression!!  I have a documented history of Lyme Carditis,  heart and lung damage, spinal damage and a recent abnormal EMG; yet they insist I have no "medical evidence" and as a result, I was denied SS again!

  I was earning in excess of $10,000 a month when I left my job; and had worked decades to get to that position.  I am now on food stamps, and otherwise penniless.  Toothpaste, shampoo and clothing are all donated, or I go without.  I recently had to go to a clinic for an infected tooth; the only way to be seen for free was to apply for the homeless program, which, after sharing my story with them, was assured that I did meet the very definition of "homeless" and indeed qualified for the program.  Although very grateful for the assistance, I cried myself to sleep that night, shocked at how this ever could have happened to me.

 I fight so hard everyday just to survive; but to have to fight politics and poverty, doctors and lawyers, hunger and deprivation, is simply too much to ask of anyone.   I can recall on all too many occasions, crying in the grocery store parking lot, after learning my food card was depleted and I had many days to go until I could buy more food.  At one point, I was living and supporting my son on $14 a month.  While my son was a minor, I was eligible for $514 welfare a month; $500 got us a room, the rest is what we lived on.  Welfare.... that from a six figure income.  I cannot even begin to describe the humiliation.  Though grateful, it all could have been avoided.  Prompt treatment and I would have been back to work long ago.  And, I was covered through my employer for disability, so regardless, it should never have gone this far. That too, was quite a lesson in the ways of the world.   During a  legal meeting regarding my long term disability claim, the judge himself, admitted to me that while he believed I was indeed very ill,  I would most likely lose because I was up against a very large and powerful insurance company who  "simply doesn't want to pay".  It seems my losses are acceptable in today's society.

 After seven years bouncing between family and friends' sofas, donated hotel rooms, house sitting opps and blow up beds, I recently met a compassionate and unbiased judge on my final appeal for Social Security Disability benefits and was just awarded a favorable decision.  While it is certainly no substitute for the paycheck I was once capable of earning, I will now be able to survive day to day and perhaps afford some treatments and therapies I could otherwise not afford to pay for.  Unfortunately, I will still be unable to afford housing so still am very much dependent on others.

I am currently working with physical therapists to address joint/back damage and with a speech therapist to help with my cognitive issues. While these lingering symptoms are invisible to others, they are very real and very disabling to me and are standing in the way of my most important goal; to be independent again.  My doctors want me to consider surgery for my back (degenerative disc disease and seven herniated discs) but prolozone (ozone) injections could be a better alternative and I can now pay for them.  I found an excellent acupuncturist that charges only 20$ and hope to resume in an effort to finally get off the last of my pain medications.  And looking into to blogging  (very) part time from home until my sound sensitivity improves, still my most disabling of residual symptoms.

I hope to help others still in the thick of it by hosting film screenings and offering online support through various groups and I someday hope to take all my notes, journals and documentation and turn it into a book.  The hurdles and eventual solutions I found to them could serve as a roadmap to others in the days to come.  And while I hope and pray that we find a cure or at very  least effective therapies for TBD's, as long as the powers to be continue to allow money and greed to influence our medical care, the numbers of victims will continue to rise.