Lyme Disease : A Death And Resurrection
My life had never been particularly difficult. In fact
I often felt guilty that others appeared to be struggling so, while for
the most part, I seemed to sail smoothly along. Of course I had my
little ups and downs but never really experienced the tragic in life.
About 17 years ago, as I was driving to work one day, I vividly remember
a conversation I had with God. Dear God, I said, I am truly grateful
for all the good in my life but I feel as if I am spiritually stagnant,
not growing, learning and helping others the way I feel I should be.
So...if I need an experience to help me evolve and grow, please....just
don't make it too difficult to bear. Looking back, I can't believe I was
saying this! Little did I know what I was about to experience.
As the year progressed, I gradually began to acquire odd unexplainable
symptoms, such as tingling and numbness in various parts of my body,
lower back pain, headaches, stiff and painful finger joints and
fluctuating anxiety. I remember visiting our general practitioner for
tingling and numbness in my arms and hands. Without testing of any sort
I was handed Valium. Of course, the Valium did not help.
During this time I was working in the cafeteria where my small children
attended school. This worked out well as I had the same schedule as my
children. When school let out for the summer that year, we looked
forward to our traditional activities....camping and boating. I will
never forget the camping trip where my life was changed forever. One
morning I woke up in our camper and felt extremely ill. It seemed as if
I had the flu but the symptoms were in some ways atypical. I was very
weakened and sick but yet I could not sleep. What was the most
unbearable to me however, was the free floating anxiety or panic....for
no discernible reason? I would find myself pacing the floor,
desperately trying to get away from it. I remember saying to myself
that I would not wish this experience on anyone...not even my worst
enemy.
In the weeks and months to follow, I would plead with my dear family,
who was so supportive and understanding (even though they couldn't
really understand ), to just put me away in a mental institution because
I felt as if I was losing my mind and I did not want to be a burden. I
made an appointment with our family doctor and was given three weeks of
antibiotics...just to be sure.....in case I had Lyme Disease. This was
around 1989. They did not test me for Lyme at this point. I was told
that it would be too early to show accurate results. It was assumed that
if I did have Lyme that it must be from a recent bite. However, I feel
the illness had been simmering in my body for quite some time. The
treatment did not seem to touch my symptoms at all and in fact, I felt
worse. The panic/anxiety became so intense that I was prescribed
tranquilizers.
For several months, when I was at my lowest point, I was unable to care
for myself or my children so we temporarily moved in with my husband's
parents while my husband stayed at our home to continue working. Then
the doctor decided that depression must be my problem so he prescribed
antidepressants. He informed me that if needed, I could take up to three
at a time. That night I did end up taking three pills because they
didn't seem to be working and in fact ended up making the situation
worse. I woke up in the early morning in a state of fear and with the
thought that I needed help. As I went to the top of the stairs to call
for assistance, I fainted and fell down the stairs. My seven year old
son called the ambulance which took me to the hospital. At the hospital
the doctors performed several tests, including a CAT SCAN of the head.
When the doctor found nothing discernibly wrong with me, I was asked
what I liked to do in my spare time. I told him I enjoyed boating with
my husband. His only suggestion, before he sent me home, was to take
more rides on the boat with my husband and that this would most likely
make me feel better.
When summer came to a close, it was time to return to work at the
school. I was barely able to function but wanted to press on for fear
that if I gave up and quit that my life would be over. At least this
way, I thought I could keep up some sort of normalcy. My coworkers were
not very understanding.....to say the least. At times I was so
lightheaded and weak that I would immediately have to lie down on the
cement floor in the stockroom to get the blood flow back to my head.
With me, it wasn't a matter of sleepiness but a simple inability to stay
upright for very long. The women I worked with would say to
me...."well, we get tired too sometimes you know, but we don't have to
lie down!"
Time went by, as I struggled every day to function, and I was diagnosed
with Chronic Fatigue Syndrome. Even though there was no cure, it felt
good to have some diagnoses besides depression. I knew something was
seriously wrong with me and that it wasn't just "all in my head."
Actually, most of it was in my head, but in an organic way...not
psychologically. Every couple of weeks a strange new neurological
symptom would add itself to the others already in my repertoire.
One of the most difficult parts was that most people just did not
understand. How can anyone be so sick for so long while the doctors
can't find any concrete cause? I can't blame them really. One has to
have had this disease to appreciate the full implications of it's
diabolical fluctuating nature. Because I didn't want people to feel
that I was lazy or mentally ill, I set out to prove that I was really
and truly organically sick. This drive led me to begin researching the
vague diagnosis of Chronic Fatigue Syndrome (CFS). I would bring all my
research to my doctors, hoping desperately that they would take an
interest. My family doctor was very supportive but all the specialists I
was sent to told me to accept my diagnosis, that I was depressed and why
was I doing all this researching? The doctors would tell me that
diabetics for instance...they accept their disease and get on with their
life so why couldn't I do the same. My neurologist told me that I should
stop all the researching because I wouldn't want her to get the wrong
idea and that other doctors would also get the wrong idea about me. She
was insinuating that I was crazy. I went home that day in tears. No one
who is sick should have to be treated this way. Many patients with vague
diagnoses, such as CFS and Fibromyalgia, often express the idea that
they almost wished they had cancer so they would be taken seriously.
Some have even expressed the thought that at least with cancer, many die
and get it over with.
After 8 years of having "Chronic Fatigue Syndrome," my research led me
to Lyme Disease. I noticed the symptoms of CFS and Lyme were extremely
similar and decided I wanted to check this out. I made an appointment
with a Lyme literate doctor and began my still ongoing recovery. I was
tested for Lyme Disease by this doctor but the results were negative.
However, I was treated anyway based on my history, symptoms and the fact
that I lived in a very endemic area. At first my symptoms became worse,
as I was warned. I was told that this was a good sign and meant that
the antibiotics were hitting the target. I was on a high dose of oral
doxycycline and it took four months before I even began to see any
improvement and then finally, little by little, some of my symptoms
began to fade away. It was a very slow process with many setbacks and
flares....but each month these cycles of flares would be reduced in
severity. I learned that the setbacks and cycles were almost always
temporary. I would often tell myself not to worry when an old scary
symptom would reappear. Usually in three to four days the particular
symptom would disappear and another one would take it's place. Again,
in my experience, each month the symptom cycles were less and less
severe.
After 4 months of antibiotic treatment, I was retested and was now
positive. The explanation I was given for this, which makes sense to
me.....is that those who are the sickest, most likely have the heaviest
load of the Lyme bacteria. Many times all of one's antibodies are tied
up to these bacteria in immune complexes. When the bacteria begins to be
killed off, this frees up some of the antibodies which can now be
measured. So...in other words....it is often those who are the sickest
and chronically ill who test negative for Lyme Disease when using
antibody testing.
Two years ago I had to switch to another doctor who specialized in Lyme
Disease. I was beginning to slip backwards because of breaks in
treatment. I had never really been on consistent long term treatment.
This new doctor had me tested with the Bowen test and I tested positive
for Lyme and Babesia. Now that I am finally being treated consistently
for the Lyme and the first time for Babesia, I feel as though I have my
life back.
During those many years in limbo, I felt as if I had lost my connection
to God. Lyme Disease had pretty severely affected by brain and nervous
system which made it difficult even to think....never mind to experience
spiritual feelings. I couldn't understand why I would have to go through
a trial or experience, which would make it so difficult to feel God's
presence.
As my thinking became clearer with treatment, my feelings of
spirituality gradually began to reappear. I spent more and more time
reading inspirational books. I wasn't trying to be healed nor was I
asking or seeking anything else material or specific. I just wanted to
feel and be aware of the presence of Spirit or God. I wanted the joy and
love and goodness I was receiving from God to flow through me and
envelope those around me. As I focused in this way, I felt as if I have
emerged from an egg into a new world of excitement, happiness, joy and
love. So many wonderful people have crossed paths with me and for this
I will be eternally grateful.
Intuition seems to have increased, Synchronicity abounds and everyone I
come into contact with is trying to serve humanity in their own special
way. I have improved a great deal and seem to have acquired new
abilities that I had never even dreamed of. It's like watching a play
unfold....a good play. I now feel as if I have a purpose in life. The
thought of growing older and losing vitality now never crosses my mind.
I am finding just the opposite to be true. Not that I will now be free
of all problems nor am I totally cured but this illness has brought me
to a point where I appreciate life and those around me...so much more.
While I personally don't believe that God sends evil or trials to us, I
think our experiences reflect the degree to which we try to abide in
Spirit. We all have a desire to know God and to feel God's love so
perhaps when we are focused on the wrong things something inside us
creates circumstances to head us in the right direction. So, despite the
fact that I still have memory and organizational problems and the world
seems to be falling apart around us, I am experiencing a more consistent
joy and assurance that in reality God is on the scene but that our real
need is to open our awareness to this fact.
Lyme can be a devastating disease but there is always hope....especially
when we look for it in the right places. I am sensing...along with a
growing number of others, that despite what the media is telling
us....more and more people are coming together in the spirit of love and
cooperation. This spirit of love is the only thing that will truly heal
our lives and the world. While, as many of you know, I feel we need to
expose the corruption which is seemingly taking place all around us....
It mustn't be with a sense of hate, fear or revenge.
I can actually say, even though the Lyme journey has been a very
difficult struggle, that if I could, I wouldn't want to change a thing.
I feel that the Lyme experience has brought me to a whole new
place....one of wonder and amazement.