Personal Statement from Jentri Anders, PhD
For the last seven years, as of 2009, 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 various of my publications on the subject, I have 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 downplayed 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:
- they were never bitten by the right (wrong) kind of tick or tick-nymph,
- if they were bitten, they were lucky enough to find the tick,
- if they found it, they removed it properly (didn’t squeeze it, didn’t scratch it off in their sleep, didn’t pull it apart while removing it),
- if they removed it properly, they removed it soon enough,
- if they didn’t remove it soon enough, they were lucky enough to have classic symptoms,
- if they had classic symptoms, their doctor was well-informed enough to recognize their symptoms,
- if their doctor recognized their symptoms, she or he gave them a sufficient dose of the correct antibiotic,
- if they got a sufficient dose of the correct antibiotic, they got no other tick-borne diseases from the tick and,
- if they had no other tick-borne diseases and got the appropriate treatment, they have had no Lyme symptoms since.
All portions of the above list are widely disputed by Lyme researchers and, don’t forget, you must also be sure of all of that 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 mainstream of sources, the vast majority of doctors and certainly every doctor I’ve ever seen in Humboldt County since the tests were invented (1980s) relies on the same two unreliable tests sent to the same labs, which do not specialize in Lyme testing and are often in error.
These are the two most readily available and cheapest tests, and the only two that MediCal or CMSP will pay for. They can give you false-positives or false-negatives. Doctors who derived their experience from actually treating patients, as opposed to treating Petri dishes, 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, because of what I would call industrial sabotage, it has not been approved by the Food and Drug Administration and is thus considered experimental by insurance companies and they won’t pay for it. This is the urine test invented by Igenex Labs in Palo Alto CA.
If Lyme disease 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 Lyme bacteria, but they aren’t transmitted; 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 long-term, low-level, chronic and/or intermittent late-stage symptoms that screw up your life and can escalate at any time but don’t make you sick enough to trigger serious efforts to diagnose you; you get 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 or because you had Lyme but were misdiagnosed with something it looks like and received the wrong treatment, or more accurately, non-treatment. (Eg, Lyme causes fibrocystic breasts, which make breast cancer detection harder, or various auto-immune diseases, including ALS). There is now research suggesting that long-term Lyme disease can either eventually become or cause ALS, MS, Parkinson’s and Alzheimer’s disease. I am personally aware of people known to have long-term Lyme disease who were much later diagnosed with Parkinson’s and of at least four people I strongly suspect had Lyme disease who ostensibly died of ALS.
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 (I have received this exact diagnosis at least once). 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. (One study actually revealed a statistically significant difference between women with vague symptoms who got diagnosed with Lyme disease and men with vague symptoms who got diagnosed with Lyme disease. The authors were at a loss to explain why men got diagnosed more than women. I felt like contacting them and explaining it, or referring them to their local chapter of NOW.)
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 (chutzpah/moxie, irreverence, 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 federal government (CDC, National Institutes of Health) or the American Medical Association 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, consulting fees and protection of their own patents.
Statistics available through public health offices are distorted in such a way that they include only a fraction of the actual cases. (If you go to the last link, the statistics part is halfway down the page.) Even the CDC states that its incidence figures, based on strict reporting (but not diagnosing) criteria, should be multiplied by a factor of 10 to learn the true incidence of Lyme disease in any given area! Research funding 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:
- only 2 percent of CA ticks carry the Lyme bacterium – a 1989 Mendocino County study (Robert Lane, UC Davis) found 14 percent were infected and that number could very well be higher in particular nooks and crannies in northern California, in one spot in the study area, 41% of ticks were carrying Lyme disease.
- you have to have a very specific kind of rash to have Lyme disease – in some studies up to 50 percent of Lyme victims who had tested positive on the best 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 lot more in its appearance than Humboldt County doctors realized in the 1970s and 80s, when many of us Humboldtians were infected.
My purpose here is to make myself available to anyone seeking the information their doctor didn’t give them. You can email me with questions, but the price is that I get to keep your email for my database, with the caveat that I would never use your name in any way without permission.