Garberville Independent – June 2003
For the last year, 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 the three-part series I did for the 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 once again call public attention to what I feel is an important public health problem being shined-on by those who should be fixing it. In the name of brevity, I’m now going to make some flat-out assertions and just assure Indie readers that I can support them, if required to do so.
Lyme disease is caused by a species of bacteria (Borreliosis burgdorferi, Bb, I call them B-flats). They are spread by a certain species of tick. The disease has an early stage and a late stage. If treated immediately and sufficiently with antibiotics, it is usually easily cured, ie, there’s never a late stage. I personally think that happens less often than most people realize.
Here are the people who don’t need to read the rest of this letter. Those SoHum residents who can be sure 1) they were never bitten by the right (wrong) kind of tick or tick-nymph (ie, tick-baby–they’re tiny), 2) they were bitten but were lucky enough to find the tick (some people feel it, some don’t) and 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) soon enough (some say 4 hours, some say 48 hours) or, 4) they didn’t remove it properly in time, but were lucky enough to have classic symptoms, so 5) they went to a well-informed doctor that recognized the symptoms, then 6) gave them a sufficient dose of the correct antibiotic (at least four week’s worth, erythromycin and tetracycline not the best choice) and 7) they have had no Lyme symptoms since. Don’t forget, how sure are you about all these factors with regard to your children?
An awful lot of people fall through the cracks in that last paragraph, 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 “establisment” 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 B-flats, 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 Lyme is 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 the B-flats, but you didn’t get them; you get the B-flats, 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 B-flats later or not (for the last two, no one knows yet if that means for the rest of your life); with or without early symptoms, you get long-term, low-level, chronic and/or intermittent 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 disease (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 must be female hysteria or the result of her refusal to stay barefoot and pregnant in her kitchen and if you research your own case and insist on a fair hearing, you open yourself to all the malice experienced by any uppity woman speaking to a male who feels his authority threatened. But, I digress.
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 SoHum 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 (chutzpah/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 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 SoHum. There’s a very long list of things people get diagnosed with instead, including arthritis, MS, ALS, chronic fatigue syndrome, fibromyalgia, degenerative disc disease and various kinds of depression.
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 B-flats, whether it’s a reinfection or just the resurgence of B-flats 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. (I’m a scientist, I know how they think and what they want–research money. Therefore, I get to bash them.)
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.
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 B-flats—a recent Mendocino County study found 14 percent were infected and that number may very well vary with microenvironments (could be higher in some nooks and crannies). 2) you have to have a very specific kind of rash to have Lyme disease–50 percent of Lyme victims who tested positive on the bad 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 than Humboldt County doctors realized in the 70s and 80s, when many of us were infected.
Go ahead, call me an alarmist. I’m afraid that’s what I called Tom Grover years ago when he was buttonholing people and providing them with similar information. That’s ok. My purpose here is to make myself available to anyone seeking the information your doctor didn’t give you. If you have access to the Internet, I can get you started with websites. If you don’t, 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 email@example.com. I am putting together a packet of info, resources, bibliography, symptom lists, etc., which I will be glad to mail to anyone who asks for it.