I. My Story
I was one of those annoying kids that
rarely got sick. I had lots of ear
infections as a kid, and then kind of grew out of being sick. I remember in college never catching colds or
stomach flu that circulated the apartment.
With the rare exception of bronchitis my junior year, I pretty much
NEVER was out due to illness.
Things changed a little as I married
and started having kids in my early 20s. Being pregnant,
nursing or trying to get pregnant makes you more aware of the quality of your
health, or lack thereof. For about a
decade I was thus embroiled. But about a
year after I had my youngest (my mid-30s), I started to notice that a few of the seemingly
minor health issues that had joined me during childbearing weren’t going
away. In fact, they were getting worse,
and inviting friends along for the ride.
The chronic anemia that I assumed came from frequent gestation
accelerated (despite no more gestating) and eventually caused me to have to receive
iron transfusions from a hematologist annually.
Illness, big & small became much more frequent and other things like
achy joints, chronic sinus pain, persistent mid-grade fevers, drenching night
sweats, brain-fog, insomnia, and the dreaded gut issues came to dominate my
life over the next 5 years. Where I used
to get by okay on 8.5 hours sleep, I now needed almost 10. I couldn’t keep up with my household work,
much less plans for further education and employment. Any extra time I had was generally spent
catching up on the many nagging tasks. I
found little time to keep up with friends and even less time for hobbies that
required more than sitting on the couch.
At first, I figured that most of the
issues came from premature ovarian failure due to having one of my ovaries removed
over a decade ago for endometriosis.
Diminishing hormones could definitely be the cause of many of my
symptoms. I also pursued the advice of
many specialists: ENT for the inner ear disease (which was eventually diagnosed
as Meniere’s), gastroenterologists for the GERD & IBS, OB/Gyns for the
hormonal issues (including 4 year of infertility treatments that failed), the
aforementioned hematologist for the chronic anemia, and an orthopedist for a number
of different joint issues. When I asked
why this was happening, I was told over and over that there wasn’t any specific
reason for all my diagnoses. Things like
Meniere’s disease, IBS, joint pain, and anemia just happen to some people. (My hematologist recently told me that it was a bit of a "head scratcher"). Also I was approaching 40, so of course some
of these things come naturally with age.
I just nodded my head and thought, if things can get this uncomfortable
at 40, I am REALLY dreading 80!
During the fallout of my many, many
failed fertility treatments, I was talking to a friend about hormone
replacement. I felt like 40 was just too
young to be seeing such a drastic change in my monthly cycle and worried that
it would leave me prematurely vulnerable to certain female cancers. Quality of life was also a concern as I was soaking
my bed nightly with those wicked night sweats, and feeling really dragged down
despite having more time to sleep with my kids all in school full-time. She eventually found and recommended a doctor
who only prescribed bio-identical hormones, and seemed open to more natural
supplements and approaches than your average American doctor. The only catch was that it was a 6-month
waiting period for the first appointment!
My appointment day finally came and
I met this doctor. He seemed nice enough
and very knowledgeable. After going
through an extensive medical history, he said he wanted to draw a number of
vials of blood for lab work before we would meet again in 2 weeks. He told me that he felt like many people who
have multiple systemic issues tended to have one unifying link, usually of the
infectious disease variety. I thought
that sounded good, but figured it would be a matter of some kind of auto-immune
disorder. For the past year, as my
health tail-spinned, I had told Derek over and over again that I think I had
something serious that was hijacking my body and causing my overall health to
degrade, like an auto-immune disorder.
Two weeks later we met. He mentioned that my hormone panel wasn’t
quite as out-of-whack as I had expected.
My progesterone was slightly low, as was my testosterone and thyroid,
but my FSH/LH levels were just fine. I
was also grossly anemic, but had had an iron infusion done during those two
weeks. (Oops, I forgot to mention that I
see a hematologist regularly. How does
that slip one’s mind I ask?!) He was
still in search of something that would tie together all of my random symptoms,
and suggested I get a few more labs drawn that day: another HNK1 panel, another
CBC (complete blood count) and a Western Blot Lyme test. The HNK1 panel that was previously done is
used to suss out Epstein-Barr (aka mononucleosis, aka kissing disease, aka
tonsil-hockey), AIDS, or Lyme disease.
Since some of the first tests that he also ran were negative for both
mono and AIDS, one serious contender was left: Borrelia burgdorferi, otherwise
known as the Lyme bacterium. In order to
better draw out the source of the supposed infection, he asked that I take a South
American herb called Cat’s Claw every day for 4 weeks. Then I would return and have my labs drawn.
A month later I gave up some blood, and
less than a week later, I got a surprise call from his office asking that I
come in as soon as possible to discuss the results and possible treatment. To my great surprise, I found that I had Lyme
disease. And I didn’t just have a couple
positive bands on the Western Blot test: I had all three bands positive on the
IgM portion of the test. That is
considered “CDC positive”. See, here is
where the real tension in my diagnosis starts.
I thought it was hard having failing health. What I didn’t realize is that just getting a
Lyme diagnosis within the traditional Western medical community was difficult,
but treating the disease was orders of magnitude more arduous. As I visited with my doctor, he outlined the
most current treatment plan in practice by other Lyme specialists in the
medical community. I would be “pulse
dosing” three different antibiotics for over a year. Amoxicillin twice a day MWF, Ceftin twice a
day MWF, and the big gun, Flagyl twice a day only on Fridays. I would cycle like this for three weeks, and
then take a week off before starting the antibiotics again. I must admit, all I felt was shock. And no small amount of disbelief. Was a little tick bite really the cause of my
continuing poor health? It seemed so insignificant,
perhaps even slightly less glamorous than saying I had fibromyalgia or rheumatoid
arthritis. It also didn’t seem like
something that would “tie-up” all of my symptoms into one pretty package. How little I knew then! But I was grateful to at least have a name to
put on the cause of my discomfort.
II. Lyme Disease Fundamentals
I was slow to comprehend the nature
of the medical
battle I found myself in. There is a
growing community of medical professionals who have rejected the simplistic CDC diagnosis, treatment and expected
outcome of Lyme and other tick-borne diseases.
One of the biggest ones is ILADS
(International Lyme & Associated Diseases Society). They disagree with each other on the
prevalence of infection, the rate of transmission, symptoms, and diagnosis
among many other issues. One thing they
do seem to agree on is that the sooner antibiotics are started after
transmission, the more likely the positive outcome. And there’s the rub: most people don’t know
they were lunch for a tick, nor do they get the distinctive bulls-eye rash (it
could look like a spider bite or a bruise if they even get a rash at all). And to make matters even more complicated,
the borrelia
bergdorferi bacteria is one smart little bugger. Shaped like a corkscrew (thus named a
spirochete), it can morph between at least three different forms within the
body, allowing it to leave the blood stream and invade all different kinds of
tissues within the body. It’s great at
outsmarting the immune system and has even been videoed swimming away from
white blood cells (it’s twice as fast) and ultimately
escaping by burrowing into tissue.
But by far its most useful adaptation is its ability to switch between
(at least) three
different forms: the spirochete (the aforementioned corkscrew shape), the
L-form, and the cystic form. The last one is the genius of the three
iterations because of its ability to go into a state of suspended animation that
makes it safe from antibiotics, the host’s immune system, and temperature &
ph changes. This complexity is one of the reasons why Lyme disease is so very difficult
to cure, much less treat.
One other super important thing to
note: Lyme disease can be a multi-systemic
infection. The bacterium can and
will invade any and all parts of the human body given enough time. Different tissues have different amounts of perfusion
(the circulation of blood through the vascular bed of the tissue), which
means some parts of the body are fantastic places for wily bacteria to hide. Some examples include peripheral tissues
(those located near the outside of the body, like skin & mucus membranes)
and joints.
III. Prescription Treatment
Because of these factors, the most
up-to-date treatment for Lyme Disease is the pulsing
method of oral antibiotic administration.
This consists of using up to three different antibiotics at one time (to
defeat the three different cell forms of borrellia bordorferi) in pulses. The theory is that you eradicate the active
forms of the bacterium, then back off and let those in a state of suspended
animation (also known as persister
cells) come out to play when they sense the antibiotics have been cleansed
from the system. Then you hit them again
hard with the next cycle of antibiotics.
It’s been proven
effective in test-tubes and has had great success anecdotally. There are other good reasons to go with
pulse-dosing: long-term antibiotics are terribly
disruptive to the friendly bacteria within the gut (and lead to social
embarrassment!), and damaging to
the liver. Pulse-dosing lowers that
load on the body and gives it time to rest from the toxic effects of long-term antibiotic
chemotherapy.
Here’s one other significant reason
to pulse-dose: when someone is being treated for a chronic infection, they are
likely to experience a Jarisch-Herxheimer
reaction (known colloquially as a “herxing”). This occurs when dead and injured
bacteria start leaking endotoxins into the bloodstream and tissues faster
than the body can remove them. The immune
systems ramps up and sudden onset of symptoms like fatigue, fever, joint pain, and
headache can appear or worsen if already present. Pulse-dosing
allows breaks for the body to process these toxins and regain strength before
hitting the antibiotics again.
IV. Alternative Treatments
Prescription
medication isn’t the only tool in my arsenal though. I’ve added a number of supplements and practices
to my daily routine to help both fight the infection as well as reinforce my
body’s own healing processes. I take
NAC, S. Bourlardii yeast, Grapefruit Seed Extract, Magnesium, DHEA, and SOOOOOOO
many probiotics that I’m practically peeing yogurt. I don’t know if it’s because of these
supplements or the chronic constipation I’ve dealt with my whole life, but I’ve
hardly had problems with the runs at all.
The other two really big things I do
are try to get as much sleep and rest as I feel I need, and continuing to exercise. Mostly that means near daily runs with my
dog, and nightly walks with the dog again (get a dog people! It will MAKE you exercise.). I feel very fortunate that I have so few
expectations of me. I doubt I could even
work a part-time job right now, or care for a baby or young child. (Shout-out
to my sugar-daddy who has really had to pull double-duty as financial provider and
main parental unit. XOXO) I consider it a successful day if I slept
enough, got a run in, and did one or two things on my miles-long To Do
list.
V. Special Consideration: Women's Issues
In the not-quite 2 months that I
have been following this treatment plan, I have noticed that there is another
factor that is barely examined in the medical community: the effect of a women’s
menstrual cycle both on symptoms of late-stage Lyme disease as well as
herxing. There is no question there is
an effect, and not in a good way. In
fact, I didn’t actually feel like I ever herxed until those few days
leading up to my period. I look forward
to seeing what I think will be a change for the good after treatment as
well.
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