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For the last two years, I have been researching the published
and online information available about Lyme disease--for
both personal and scientific reasons. What I have learned,
as the result of both my reading and my personal experiences
is, frankly, quite appalling. In a three-part series I did
for the Garberville Independent last winter, I tried to
sketch out some of the complexities of the disease and the
absurdities of a political situation that I’m sure has led
to many initial misdiagnoses, including my own.
Failing to diagnose and properly treat Lyme disease during
the window of opportunity that occurs immediately after
infection can be both painful and fatal. For that reason,
I want to call public attention to what I feel is an important
public health problem being shined-on by those who should
be fixing it.
Here are the people who don’t need to look at the rest
of Lyme information on this website--those northern California
residents who can be sure: 1) they were never bitten by
the right (wrong) kind of tick or tick-nymph, 2) they were
bitten but were lucky enough to find the tick, 3) they removed
it properly (didn’t squeeze it, didn’t scratch it off in
their sleep, didn’t pull it apart while removing it), 4)
they removed it soon enough, 5) they were lucky enough to
have classic symptoms, 6) their doctor was well-informed
enough to recognize their symptoms, 7) their doctor gave
them a sufficient dose of the correct antibiotic and 8)
they have had no Lyme symptoms since. All of above are widely
disputed by Lyme researchers and, don’t forget, you must
also be sure for your children.
An awful lot of people fall through the cracks indicated
above, particularly, and this is an important point, because
THE TESTS ARE NOT RELIABLE. In spite of warnings from every
direction, including the laboratories themselves and the
most “establishment” sources, the vast majority of doctors
and certainly every doctor I’ve seen in Humboldt County
since the tests were invented (1980s) relies on the same
two unreliable tests sent to the same lab, well-known for
its unreliability in Lyme testing. These are the two most
readily available and cheapest tests, and the only two MediCal
or CMSP will pay for. They can give you false-positives
or false-negatives.
Doctors who derived their experience from actually treating
patients, often themselves, say those two tests are up to
40 percent unreliable. That means you could almost do as
well tossing a coin. In addition, it is well-established
that the longer you have hosted the Lyme bacteria, the less
likely it is that you will test positive with these two
tests. There is now a better test, but it costs $400, you
can only get it from one of two doctors north of the SF
Bay Area (Ukiah and Sonoma) and they don’t take MediCal,
even if MediCal would pay for it, which it won’t. I don’t
know if private insurance companies will, but I doubt it.
If not treated properly, several different things might
happen, some of which are nightmares. There are experts
who support all of the following non-treatment scenarios:
the tick had Lyme bacteria, but you don’t get them; you
get them, and host them indefinitely, but you never get
sick; you get sick, but you get better on your own and stay
that way, whether tests can find the bacteria later or not;
with or without early symptoms, you get longterm, low-level,
chronic and/or intermittant late-stage symptoms that screw
up your life and can escalate at any time; you get acute,
severe, possibly life-threatening symptoms months or years
after the tick bite; you die directly from the Lyme symptoms,
or indirectly from conditions caused by Lyme symptoms (eg,
Lyme causes fibrocystic breasts, which make breast cancer
detection harder).
It is very difficult to figure out if you’re one of the
people who fell through the cracks, given the tenacity of
outdated research, the combination of ignorance and arrogance
to be found in most doctor’s offices and the ease with which
you can be summarily dismissed as a hypochondriac. We can
throw a little genderism in there, as well, in the case
of women--anything a woman has that doesn’t show up on a
test is likely to be called female hysteria or guilt, the
result of her refusal to stay barefoot and pregnant in her
kitchen. If a woman researches her own case and insists
on a fair hearing, she opens herself to all the malice experienced
by any uppity woman speaking to a male who feels his authority
threatened. Women, be especially aware of this.
Because of my own frustrating and often humiliating experiences
with the medical establishment as it is represented in Humboldt
County, I greatly fear and suspect that there may be quite
a few people in the county--and probably in the surrounding
counties--with late-stage Lyme disease. I know how hard
I have had to fight to be taken seriously by anyone who
could help me and I have more resources than most people
(chutzbah/moxie, irreverence for authority, professional
skepticism, tolerance for reading dense scientific articles).
How must it be for people who worship their doctor and hate
to read?
The disease is incredibly complex. One widely-circulated
symptom/risk factor list, available on this site, has 45
items you can check. Some of the mental-processing symptoms
are extremely subtle and overlap with the symptoms of marijuana
intoxication--surely a diagnosis problem in Humboldt County.
There’s a very long list of things people get diagnosed
with instead, many of them even less curable than late-stage
Lyme disease.
Also, having it once and being treated does not render
you immune. You can be infected again. You can get several
different doses at different times, with different strains
and with or without other tick-borne diseases. And, given
the unreliability of the tests, there is really no way to
know if you ever really got rid of the bacteria, whether
it’s a reinfection or just the resurgence of bacteria that
escaped the antibiotics first time around.
Doctors back East are killing each other off professionally
(licenses being revoked) over the best way to diagnose and
treat Lyme disease. Doctors all over the country and definitely
in Humboldt County often think they know something about
it, when all they are doing is uncritically taking as gospel
whatever the feds or the AMA says. That is, they accept
the pronouncements of their more-powerful colleagues who
often have a vested interest in scientific positions based
on their own distorted research data. As a scientist, I’m
ashamed to say just how depraved my colleagues can get in
pursuit of research funding and consulting fees.
Statistics available through public health offices are
distorted in such a way that they include only a fraction
of the actual cases. Research funds and the public interest
are then based on those distorted statistics. And how much
of a chilling effect on honest discussion derives from a
concern over the effect truth might have on tourism? Officials
in Lyme, Connecticut, are very unhappy that their town is
now known worldwide--for its ticks. Such a dynamic in tourist-oriented
Humboldt County would come as no great surprise to me.
The ramifications are endless. The one that most concerns
me is people being sick because of ignorance and misinformation.
I have seen flyers emanating in recent years from local
health providers that are still saying that the tests are
reliable. This is appalling. Don’t believe it. Other pieces
of misinformation: 1) only 2 percent of CA ticks carry the
Lyme bacterium--a recent Mendocino County study found 14
percent were infected and that number could be very well
be higher in particular nooks and crannies in northern California,
2) you have to have a very specific kind of rash to have
Lyme disease--20 percent of Lyme victims who tested positive
on the unreliable tests never had a rash or never noticed
it (no way of knowing that number for those who have symptoms
but never tested positive) and the rash varies a hell of
a lot more in its appearance than Humboldt County doctors
realized in the 1970s and 80s, when many of us were infected.
My purpose here is to make myself available to anyone seeking
the information their doctor didn’t give them. I will be
glad to call you or write you, but you can’t call me (answering
the phone is hard for me.) My email address is jentri@tidepool.com.
Or Jentri Anders, PhD, 3883 Patricks Pt. Dr. , Space 12,
Trinidad CA 95570. |
