Your
article on Lyme disease (”Professor lands grant for tick and Lyme
disease research,” Times-Standard, Sept. 1, Page A1) implies that there
were only five cases in the last five years in Humboldt County. That is a
misleading statement. The County Health Department only reports Lyme
cases that meet the Centers for Disease Control criteria for
surveillance. This relies on very insensitive tests that miss more than
50 percent of those who are truly infected. There are far better tests
available now that can be used to confirm what is a clinical diagnosis.
Go to
lymedisease.org for more on
this. I personally have met over 60 people with Lyme disease and only
two of them were CDC positive. Hence, all the rest of us are not
reported to the Health Department. They can't know how many cases there
are until they start counting all of us. Also, by saying that there are
only a few cases, doctors don't consider it as a diagnosis and the
public doesn't take the threat seriously. When you count everyone who
has been diagnosed, it shows that Lyme disease is a huge problem here.
In the late 1980s, I had my first Lyme screening test at the
County Health Department. They did say that it was an inaccurate test.
It came out negative and it was wrong. I spent the next 20 years with
declining health. It started with arthritis that moved around,
gastrointestinal problems, debilitating fatigue, depression and anxiety
with lots of reoccurring stomach
flu. It slowly evolved into severe neurological problems that included:
Slurred/garbled speech, loss of balance, weakness, dizziness, nausea,
Bell's palsy, trouble swallowing, light and sound sensitivity,
stiff/frozen neck and shoulders, heart palpitations, insomnia,
migraines, shortness of breath, blurred vision, twitching eyes, intense
muscle spasms and skin sensations that go from numb to crawling,
prickly, cold , burning or intense pain.
I was finally diagnosed
with Lyme disease in 2007 and have been treating it and several
co-infections on and off since then. When I go off of antibiotics, I
start to relapse after three weeks. There are many animal studies
showing the persistence of the organism after antibiotic treatment. I
don't find the treatment to be too harsh and it has enabled me to get a
whole lot better.
At the same time, it is very disheartening to
continue to see such ignorance about Lyme in the medical comm
unity.
Peoples' lives are being destroyed by this neglect. We desperately need
our primary care doctors to become more Lyme literate, especially those
who treat the poor. It's a terrible thing to let so many people become
so sick and disabled when we could do something about it.
The problem is not the ticks or even the bacteria, it is the ignorance.
Janis Taylor resides in Fieldbrook.