Part Ten: Living with Chronic Lyme Disease: a long and difficult journey

Part Ten: Lyme Disease Diagnosed, and Still Doctors Don’t “Get it” 

My new "out-of the-mainstream-doctor/nutritionist" had been a God-send. The diets and supplements made me much healthier, but my doctor also noted the dips in my health that seemed to be cycling with some regularity, so after almost two years on her special diet and supplement regime, she tested me for Lyme Disease using the Western Blot IgM and IgG Blood tests.

These blood tests were sent to Igenex, a special lab for tick-borne illnesses, along with my medical history. At the time little was known about this special lab by regular mainstream doctors. This lab has both extra-sensitive testing equipment as well as specialists in tick-borne illnesses to properly review the histories as well as the lab results. Their conclusion was that I definitely had Lyme Disease and needed proper treatment. My IgG test was Negative (indicates current or old infection) and the IgM test positive (indicates current infection).

Because my IgG test was negative, but the actual test result paper read “equivocal” for all but one band, other doctors I worked and consulted with were not so sure that I should consider extensive antibiotic treatment without further testing to rule out a false positive test. Confused and not wanting to believe that I had Lyme, I took the advice of the regular mainstream doctors and asked my personal doctor for more testing. She agreed and a series of 24 hour urine tests were done following medication that was taken to flush out any potential antigens from my bladder walls. These test were positive. Lyme Disease could no longer be denied and as I read about this illness, I realized my history all made sense. My doctor also told me, what it took years for me to fully understand, that I was far sicker than I ever imagined.

I have since learned that testing for lyme disease is extremely difficult.  There are many different strains of Borrelia (lyme infection), and it is able to escape detection and treatment by mutating into a cyst form and hiding so that the immune system doesn't produce antibodies to kill it.  For this reason diagnosis by tests alone is NOT recommended and clinical findings must be considered as well, though in my case, my blood IgM test for active infection was positive, as were my urine antigen tests.

I then asked about my children and whether or not I could have passed it onto them during pregnancy as my pregnancies were so difficult and I had had the false positive syphilis (VD) test when I was very young. My doctor helped me to understand this false positive test had likely picked up the presence of my Lyme spirochete infection in my early twenties. I learned what many doctors do not know: Lyme can be passed in utero and my doctor agreed to test them as well. The results of their tests returned with a “strong positive”. Apparently they tested more positive than I did as their immune systems were not as damaged, having had the illness less time than me.They too had never had a tick bite or any rash excepting those that came with the usual childhood illnesses.

Their history indicated that their Lyme was most likely congenitally acquired.   Many doctors do not know that Lyme Disease can be passed in utero, and it is suspected that it may also be passed sexually. Fortunately, my husband seemed to be without clinical findings and went on to have a negative Western Blot test.  (to be continued....)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen

 (*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Part Four: Living with Chronic Lyme Disease: a long and difficult Journey

Part Four: Life Continues and New Problems Arise

As my biological clock was ticking, and my daughter's and my symptoms were abating, we decided to have we had a serious talk with my GYN doctor about having another child. The issues I had during my first pregnancy were frightening and we wanted to better understand what had happened and whether or not having a second child was a safe option.

He assured us that as my symptoms had largely come and gone and with it my first and only serious diagnosis, it was foolish to let a seemingly “fluky health incident” destroy our dreams of a bigger family. This was the advice we wanted to hear and I was soon pregnant with our second child.

This time I took greater care of myself and though I seemed to do better in some ways, my second pregnancy still did not go well.  I "spotted" during the first trimester and my GYN didn't think I would carry my second baby to term. He told me I would likely spontaneously abort her, the way it was going. We were all pleasantly surprised that I did manage to carry her full term. I was more lucky than I realized at the time, as many mothers infected with Lyme Disease cannot. I, of course, still did not know that I had Lyme.

By the end of pregnancy I had experienced carpal tunnel in both of my wrists and after giving birth, I became sick with pneumonia and pleuritis (yet another “itis”).  Still being watched by rheumatologists, the diagnosis that followed was Chronic Fatigue Syndrome/ Fibromyalgia.  There wasn't much known about it at the time, but it legitimized what I was feeling: very tired with pains that would come and go!

As I struggled to adapt to what I thought was to be a chronic state of exhaustion, I used both my skill sets as a nurse and special educator not just to do my job, but to live my life. I became an expert in setting goals and doing small incremental tasks to accomplish them and found ways to become better organized, more efficient, plan ahead in the extreme and when I could, execute everything according to plan. It was my way of compensating for my lack of energy and achieving what I wanted in my life.

My nursing knowledge and skills were also invaluable, for without realizing it, I was constantly evaluating and treating us and only seeing  a doctor when it was absolutely necessary.  Doctors, I learned, didn't seem to provide any real answers to what was happening to me or my kids. It seemed that most often my issues were blamed on this inexplicable illness and I was simply advised to take better care of myself, though I didn't have the energy I needed to work and care for a young child and baby? They didn't seem to understand that however I managed, my exhaustion disrupted any sort of routine or resolve I might have for leading a healthier life.

My second daughter was also colicky, and was born with “benign birth defects”.  We didn't know at the time that she too suffered with Congenital Lyme Disease. Her colic issues were worse than my first daughter's and we nick named her "our cry baby" as her colic lasted six months. Her belly was distended and she suffered severe consitipation that doctors thought was due to an extra crink in her bowel.

We were led to believe that her Pectus Excavatum, although rather extreme, was a benign condition. This is a birth defect where the end of the breast bone is indented.  Sometimes heart issues accompany this deformity, but luckily not in her case.  We weren't done with the issues that her Pectus Excavatum caused, though we didn't know it at the time and were given many years before we had to revisit it.

Life wasn't getting easier! We didn't understand at the time just how ill I was and that we were raising two children that were equally as ill. I did master the art of compensating which meant that I was the only one in my neighborhood to have my holiday shopping done, along with my Christmas cards ready for mailing before I returned to my school job every fall, for I knew I would likely be so exhausted by December vacation, that I would be ill and spend much of my vacation in bed recovering before starting the second school term after which I would crash again.

I called after-school time with my kids parties which meant my oldest would run for the crackers, while I got the games and books and headed for bed. I had to go horizontal after a day of work. We even got a bigger bed. All Martha Stewart ideals of home-making were adjusted as well. Casseroles and home-made TV dinners were made and frozen on the weekends and simply popped into the oven each evening. Our life schedules were altered to meet the demands of raising kids and working a full time job that exceeded my physical energy.

Our family roles were flexible and accommodated the demands that our illness was causing. We simply did as we needed to do to keep up with raising our kids and working, and could only wonder why others doing the same were not so stressed.  My husband’s evenings were spent doing laundry and household tasks, while I took the children to bed with me right after dinner.  I read to them until I fell asleep, and then the oldest would get her dad to tuck her and her sister into bed.

At the same time we felt so stretched, little help was available from our extended families, as my husband's parents lived out of town and  my parents were struggling to deal with the return home of my younger brother who was suffering from a serious atypical MS that would kill him eight years later. My doctors speculated later that his Multiple Sclerosis was possibly lyme-related. My younger sister suffered with drug addiction problems. Her drug of choice seemed to be "speed", likely self-medicating through similar issues with fatigue as I was having, though not perceived that way at the time. As I was putting up meals for our family on most weekends, I took to putting up special meals for my brother and would offer support as I could for medical emmergencies that my parents struggled to know how to handle. We were all on overload!

Paying for child care while we worked was no small expense, and while we moaned about the stress, we were grateful to our wonderful neighbors across the street who would occasionally take the kids so Tom and I could have a couple of hours to ourselves to grab a quick hamburger out. As one of my favorite authors wrote in her book, The Hiding Place, "this was but preparation of what was to come." (to be continued....)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give-up on living their life to the fullest extent possible.)

Part Three: Living with Chronic Lyme Disease: a long and difficult Journey

Part Three: My Symptoms Increase and More Challenges Ensue

Although my symptoms and complaints increased they were often discounted by my doctors or worse, were attributed to anxiety, or even being a hypochondriac. This is not uncommon to those who have invisible and undiagnosed illnesses. Lyme often produces strange, inexplicable symptoms that come and go and leave doctors perplexed. What cannot be explained is often attributed to having a psychological basis.

There was good reason for my concerns, as well as the anxiety that accompanied them. If inflammation is enough to be systemic, the brain will also experience inflammation and cause anxiety. I was more than willing to to seek psych support as I knew that I needed help, though I didn't understand, nor did my doctors that many of my issues really could not be helped with counseling. My symptoms still weren't being recognized as being connected to the serious infection raging in my body and brain.

I learned in my nursing school days that the name of any bodily organ with “itis” at the end means “inflammation of” and my list of "seemingly acute illnesses" ending in “itis” grew longer through my twenties and then into my thirties. Along with my many “itises” I also went on to have heart irregularity that stymied cardiac specialists. Doctors noted that this irregularity was fortunately benign, not life threatening. This was just yet another of many documented and seemingly random bizarre symptoms.  I later learned that Lyme is a disease that causes inflammation as well as heart irregularity, which for some can, indeed, be life threatening.

When I became pregnant at age thirty-five, my symptoms finally got the attention they deserved from medical specialists. Pregnancy can further tax a body that is already stressed with an underlying disease process, causing symptoms to worsen.  For me, it was a time of fevers, joint instability, allergic reactions, and skin break outs as never seen before.

It should not surprise me that my first serious diagnosis, albeit a false one, came right after I delivered my first child. Serious back and joint issues ensued and with them more abnormal lab results. Systemic Lupus, an autoimmune disease, was the suspected cause.

I couldn't lift my baby without serious pain and my neighbor had to help me lift her in and out of her car seat when I went back to work. Breast feeding did not go well.  My daughter was colicky and had on-going ear infections.  Pink liquid bubblegum Amoxicillin seemed to be a daily supplement to the usual infant feeding regimen.  I was not a glowing mother, nor was my baby easily contented. Twenty-one years later we would learn that she had been born with Congenital Lyme Disease. Lyme we learned could be passed from an infected mother to her child in utero. We didn't realize that our baby's health issues as well as mine were Lyme Disease induced. We just knew that life was a lot harder and we didn't seem to be like other young parents with their first-born children.

A colicky baby is enough to stress any parent, new or experienced, and we struggled to cope.  Being too tired or too stressed, became our way of life and by the time she was off to kindergarten, we had mostly acclimated to our new "norm" and our symptoms seemed to have abated a bit.  My diagnosis of Systemic Lupus was rescinded by my doctors, though Chronic Lyme Disease had yet to be diagnosed.

I had surgery to repair a badly damaged ligament in my left ankle and still wore ankle splints on both ankles under my socks, to prevent my ankles from turning at the slightest irregularity in the ground surface. I didn't know it then, but I was not only experiencing joint instability problems but neurological issues as well.  My proprioception was altered and I didn't know exactly where my feet were in relation to the ground.  I exchanged beauty for function by wearing “sensible, broad-based flat shoes", that would not easily turn, keeping me safer and preventing further injury! My husband and I were altering our dreams, and adjusting to the new realities of what we thought were random health problems for both me and my child. (to be continued.)

The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give-up on living their life to the fullest extent possible.)

Part Two: Living with Chronic Lyme Disease: a long and difficult journey

Part Two: Abnormal Findings, but Not Considered Significant

Lyme disease is caused by Lyme Bacteria, Borrelia burgdorferi that is often, but not always transmitted to people through a tick or other insect bite. Lyme bacteria takes different forms, but often it is the spirochete form that first penetrates and infects human cells. Spirochetes have life cycles and so I erroneously reasoned that if my symptoms were cyclic, they must be related to the only cycle I knew I had, though sometimes the pattern of feeling good or bad did not seem to coincide with my female hormone cycle.

My hormones were raging and tumultuous at best and with them my menstrual cycles very hard and painful. My girlfriend in college used to laugh and tease me, asking how many days before or after my period, as I blamed everything on them, not knowing that I was in fact harboring spirochetes whose life cycle were truly making cycles of varied states of well-being in my body.

My validation for spirochetes being present in my young adult years, came when I had a false positive syphilis test during a physical when I went to work in a California hospital after my second year of college during my summer break. Apparently a VDRL test was done routinely for employee physicals and the results of mine came back positive. I was clueless, when they asked for ”my contacts”, I thought they meant the ones in my eyes.

It only took a brief examination to confirm that I was indeed a virgin and that naive! The doctor didn’t see then that fatigue, and achy joints along with this false positive test could be significant, though perhaps to gain employment I failed to mention my complaints. Syphilis is a spirochete, similar to the Lyme spirochete and hence showed a false positive VD test.  I also didn’t know, and neither do many doctors that women with Lyme have unusually hard and painful menstrual cycles with exaggerated PMS.

As my symptoms often came and went, I was optimistically fooled as many are, that I simply suffered from different acute and short term illnesses.  One doctor even thought that I was ill more often simply because I was a nurse and exposed to more “bugs”.  At the time this made perfect sense, though as a child I was never sick, and my peers weren't experiencing the same struggle with their health as they practiced nursing.

After college,I thought perhaps my fatigue was related to shift work, which didn't agree with my body. As a newborn nurse, we would often donate blood to assure that our tiny patients received only blood from healthy subjects. Mine was tested and not acceptable due to a positive CID Titer (Cytomegalic Inclusion Disease), another sign that all was not well within, though I didn't feel ill most of the time. I reported this finding to my doctor, but again he had no answer for me. He felt, no treatment was needed, as to him I appeared nothing less than a healthy young woman.  Lyme Disease, I have since learned, mimics many different illnesses and so it is not surprising that my doctors were as fooled, as I was.

I knew nothing of Lyme Disease and even if I had, I wouldn't have given it a second thought. I had never been bitten by a tick or experienced a bull’s-eye rash and my come-and-go-symptoms fit most common acute  illnesses.  I have since learned that many stricken with Lyme don’t recollect having a tick bite or any sort of rash, much less the hallmark symptom of a bulls-eye rash. Rashes can also go unnoticed if they are in an area that is hard to see. I did grow up in the era of Hair and had sufficient hair on my head to cover most of my body. (to be continued...)

(The illustration above is done by Hannah McMillen; figure drawing by Sarah Kate McMillen)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Part One: Living with Chronic Lyme Disease: a long and difficult journey

Doctors are Clueless and So Am I 

I have had Lyme Disease for what seems like forever. I figured that it has been about forty eight years which equals approximately 2,496 weeks, which is getting very close to forever! My symptoms started when I first went away to college. Overwhelming fatigue and joint aches were my complaints, but then I was “burning the candle at both ends” and worked in a kitchen carrying heavy stacks of plates and partied and studied into the wee hours of the morning, so who wouldn't be tired, or have achy hands?

I lived in Colorado and I knew that ticks carried Rocky Mountain Spotted Fever.  Lyme wasn't even a consideration by my doctors or me. Lyme Disease was not a reality for most in the sixties, though it did exist, and was even tested from a prehistoric corpse found not long ago. To date there are no tick fences that have kept it from being everywhere, albeit its prevelence is greater in some areas than others. I just read that currently Vermont ranks second state in the US for highest prevalence of this disease, though I believe that it came with me when I moved from Colorado to Vermont over twenty years ago now.

When I sought early medical treatment, I was told that I needed more exercise, never mind that I had no car and walked everywhere!  More medical advice in the ensuing years seemed equally as useless: perhaps I had just overdone it; needed to have a better diet; or perhaps I was depressed and didn’t know it.  I did know that I ran short of the energy I needed to live my life fully and all medical advice focused on what I needed to do differently, though I appeared to be a healthy specimen, not unlike my peers (appearances deceive many, I have learned, especially doctors).

I heeded my doctor’s well-intended advice, as any young adult would. I simply carried on, tried to avoid excess, though likely NOT when it came to my passion for sweets or life and occasionally crashed and burned and slept for a day or two at a time and didn't seek more medical advice unless I felt like I couldn't live without it. (to be continued...)

(The illustration above is done by Hannah McMillen; figure drawing by Sarah Kate McMillen)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)

Introduction: Living With Chronic Lyme Disease: a long and difficult journey

Doing What I Vowed Not to Do

I have decided to write my own personal story of living with Chronic Lyme Disease.  It is becoming an ever growing passion of mine that Chronic Lyme Disease become officially recognized in the medical community. It is one of the largest growing illnesses of our time, and its chronic form is largely denied by most doctors (ones Lyme patients refer to a non-lyme-literate doctors). I realized how much I needed to write about this when three more of my friends/acquaintances were recently diagnosed and treated for Lyme and still another  goes with no treatment after his parents found yet another tick embedded and his doctors simply want his parents to watch and report any illness that should follow.

None in my family can stay silent when we hear such news, as we personally know that Lyme is a disease that needs to be taken seriously. All of those affected by Lyme, we feel, should be fully informed regarding the status of this disease in the medical community, the different schools of thought regarding treatment and the consequences of not treating it sufficiently. Sadly, some will not want to be informed, though I respect their choice.

I feel sick inside when I hear of so many acquiring this illness, though I forget that for them it may be different.  Perhaps they will be one of the lucky ones that get adequate treatment in time so they will not experience the long term effects of this dreadful illness.  I was not so lucky.

I vowed when I started my blog, not to write about Lyme, politics or religion but I have decided to break this vow.  I am going to tell my story, including the politics surrounding this illness and the faith that keeps me going.  It will be a series of seventeen blogs for those that are interested and I will post them in between my regular home arts blogs.

My intent is not to scare anyone. I will merely tell my story of living with Chronic Lyme Disease.  I consider living with this disease to perhaps be the single most creative accomplishment in my life and perhaps telling my story of going too many years without a proper diagnosis, will prevent someone else from doing the same and avert the struggle that I have lived. Knowledge is powerful and I often wish I knew then what I know now.

I believe that it is a story of hope for whether you are dealing with this illness or another, there is much to be learned spiritually, mentally and physically from dealing with something bigger than oneself. There are many ways to live life to its fullest despite limitations, and I hope that my story will encourage others to do the same or perhaps be of support to those who find themselves in a similar struggle.  For Chronic Lyme Disease patients, this is actually not an uncommon story.

I have intentionally broken up my story into short readings. It is a telling of facts, as best I remember them. I have attempted to cut out the extra drama and complaints, though to be sure, as I struggle with this disease  I have and continue to live with plenty of both. I believe that long term treatment aimed at the cause of the disease rather than its symptoms has enabled me to greatly reduce, if not eliminate many of my symptoms and has increased my hope of arresting this disease once and for all. (to be continued....)

(The illustration above is done by Hannah McMillen; figure drawing by Sarah Kate McMillen)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering any illness.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)