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.)