For
those close to me, you probably know the transition my health has taken
over the last several years. But for those who are new to my life or
those who may just be on the outskirts or might not understand how my
Lyme disease has affected me, I want to summarize it. It also helps me
to put things down on paper so I can see the progress I've made on days
when it feels like all I do is move backward.
I want
to state blatantly, though, this post isn't for sympathy or for someone
to tell me how strong I am. I'm not. I'm a survivor. That doesn't make
me strong. Please lend your understanding, but keep the sympathy for
someone who deserves it.
Lyme disease is caused by
spirochete bacteria (they look like little corkscrews)
called borrelia bergdorferi. They are typically vomited into the body by
a tick after it bites and feeds on your blood. Sometimes there's a rash
and flu-like
symptoms. In my case, there were not and I don't remember the bite. So, I
could have had it from just a few months before testing positive, or I
could've had it since I was a kid...or anywhere in between. Symptom
wise, I believe I was infected somewhere between 2004 and 2007. For
those who are immediately diagnosed, treatment is quick, usually simple
and while the antibodies are always there, generally speaking, it's
"cured" by most definitions. Testing is incredibly difficult because
accurate testing has not been developed. It's a hit-or-miss kind of
thing, so the fact that my tests came back positive is miraculous
enough. Most Lyme patients don't get solid proof that they have it.
For
those of us who are bitten and don't
realize it, it turns from acute Lyme disease to chronic Lyme disease.
It's also incredibly difficult to treat because the CDC does not
recognize chronic Lyme disease as an actual disease. They (along with
most medical doctors) believe that once a round or two of antibiotics is
administered that the disease is cured. Any symptoms beyond that
treatment is considered "post-treatment Lyme disease treatment" and "in
rare occasions lasts more than six months". Considering the hundreds of
thousands of people with ongoing Lyme disease, this is not the case.
It's not "rare" that it lasts longer than six months. Almost everyone
who has been treated for Lyme disease beyond the immediate period
following an infected tick bite goes on to suffer from months and years
of ongoing symptoms, if not a lifetime of fighting relapses and risks of
reinfection. It's important to know that while the CDC is one of the
most knowledgeable sources on most diseases, for years they refused to
recognize the sheer volume of patients diagnosed with Lyme disease. They
hid the truth from the public, and they've hidden treatments, tests and
other truths about the disease itself from those who suffer from it. I
caution anyone with Lyme or if you think you may have Lyme to research
as much as you can, but seek treatment from a Lyme Literate Medical
Doctor. These doctors have been specially trained and certified for the
diagnosis and treatment of Lyme disease and its co-infections.
Anyway, back to my truths...
Those
corkscrew bacteria are Satan in a molecule. They are like teenage
boys: they screw EVERYTHING. Cells, organs, blood, tissue, muscles,
brain, eyes, ears....you name it and it's going to penetrate it. In the
late-stage chronic lyme sufferers (like myself), when it penetrates the
brain, it literally drills into the gray matter in your skull and
permanently damages everything in its path, microscopically speaking.
For me, it started in my thyroid and moved up my spine, through my
cerebellum and into my temporal lobe. It has affected memory, hearing,
speech, body temperature balance, ability to think of correct words and
phrases, moods, and caused me increased sensitivity to noise,
temperature and smell. I have muscle fatigue, pain in most of my joints,
exhaustion in general as well as everything I mentioned above.
Sometimes, I have good days. Most of the time, I'm average. But my bad
days are bad. Those are when I stay in bed, limit my interaction and
sleep - not just for recovery, but for the sake of saving relationships
because my moods are volatile and I can't control them well. Anxiety
attacks can come out of nowhere, last for hours and take days to recover
from. So can bouts of rage and anger. These mood swings zap energy from
me and it takes me a long time to get over them, much less the
repercussions of the people who are in the path of my tornadic
destruction.
It also affects my balance, my equilibrium, my organ function, my
immune system, my breathing/cardio abilities, and my energy levels.
You'll sometimes hear me refer to having -or not having- spoons. That's
based on the Spoon Theory, which describes what many chronic illness
sufferers deal with:
http://www.butyoudontlooksick. com/articles/written-by- christine/the-spoon-theory/
Again...the
symptoms aren't all the time...and not all symptoms at once
(usually)...but my bad days can cover quite a few symptoms in varying
degrees of strength.
As
far as the timing of my diagnosis, I can only go off of what my
symptoms were and when they developed. While depression and anxiety have
been lifelong issues for me, the majority of the other symptoms began
in the mid-2000s. My
mother-in-law remembered me talking about being bitten by a tick in 2004
after we'd taken in some baby bunnies who'd been abandoned by their
mother, and I
remember picking numerous ticks off of them when we first brought them
inside. I don't remember the bite, but my MIL did. By January 2008, I
had dealt with several episodes of Bells Palsy (where it looks like
somebody's had a stroke and half their face is sliding off their skull),
which is usually a symptom of late stage Lyme. I had major health
issues in 2012 when my reproductive organs began failing. I lost
my right ovary in Feb 2012 to a dermoid teratoma tumor, then lost the
uterus and cervix in May that year. Six months later, I went back under
the knife a third time so the doctors could repair what didn't heal
correctly. Menopause began shortly after that and I've dealt with
numerous hormonal changes. This was also when the major mental and
emotional
issues began. They never seemed to get better. I blamed all the
anesthesia, but as it turns out, most likely, it was Lyme related. I was
finally diagnosed in 2014 at the urging of several friends, and it has
pretty much consumed my life since
then.
I have taken a plethora of antibiotics, both
oral and intravenously. I have changed dietary habits, added numerous
vitamins and supplements, hormone replacements, anxiety and depressive
medications as well as hordes of natural and homeopathic regimens to
help ward off the symptoms I deal with.
I have, during
the course of my treatment, felt suicidal and hopeless more often than I
care to admit. I also push people away who either aren't strong enough
to deal with the ugliness of this disease or lack the strength of
dealing with me while I fight this disease. I am incredibly difficult to
love right now. I tend to keep to myself as often as possible.
Again,
I don't want sympathy or pity. But I will happily take your acceptance.
I'll take your attempt at understanding. I'll take your commitment to
learn more about it. I'll take your proactive approach to preventing it
in your own lives and the lives of your pets and children. I'm not
strong. I'm not a hero. And I don't deserve your admiration for
persevering through this hideous disease. But I will gladly help you
learn more so you don't wind up like me.