LYMEPOLICYWONK: TO TELL THE TRUTH. . . Reports of Antibiotic Lyme Death Have Been Greatly Exaggerated.
Dr. David Resnik at the University of Wyoming is a plainspoken public health care policy ethicist. When he describes the obligation that governments and others with positions of authority in health care have when communicating with the public, he may sound a bit like your mother. It is "to tell the truth, the whole truth and nothing but the truth". The obligation is to tell the public the information that they need to be able to make individual choices. This includes not exaggerating or preying upon fear to manipulate people-even if you do so with good intention. A recent case study, anecdote if you will, violates each of these tenets, one by one. . . More after the jump.
A recent article written by members of the Minnesota Health Dept., “Death due to community-associated Clostridium difficile in a woman receiving prolonged antibiotic therapy for suspected Lyme disease”, is written to prey upon fears rather than inform. It focuses on a single death caused by C. difficile (a bacterium associated with the use of antibiotics). Deaths caused by antibiotics in Lyme disease, while tragic, are very rare. Yet the article paints the death as though it were commonplace.
Equally important are the things the article leaves out. It does not say that any disease treated with antibiotics runs the risk of C. difficile superinfection. (And, of course, it does not suggest avoiding treatment for chronic infections like tuberculosis and leprosy because of this risk.) It also does not talk about the risk of death from Lyme disease itself. While not common, there are 23 peer-reviewed articles documenting death from Lyme disease. It also does not point out the risk of failing to treat a serious disease that causes disability equal to that of congestive heart failure.
This selective attention is a form of manipulation. It fails to tell the whole truth. It distorts an element of truth to manipulate the public and to create unnecessary fear and anxiety. The funny thing, of course, is that it is an anecdote, a single case. Well then, are anecdotes useful only when they support a particular view point? Is what’s good for the goose, good for the gander? Do public health officials have an obligation to tell the whole truth and inform rather than manipulate the public? What do you think?
You can follow additional comments on Lyme policy at www.lymepolicywonk.org. You can contact Lorraine Johnson, JD, MBA at firstname.lastname@example.org.
- January 25, 2011 at 1:14 am
Did (IDSA) ever learn their ABC's?
How many cancer patients are saved, and how many die, from extensive chemo and radiation? (more than one?)
- January 25, 2011 at 12:00 pm
I just read that article by the Minnesota Health Department, published on behalf of the IDSA. This is an absurd example of the IDSA capitalizing on the massive, intentional gaps in chronic Lyme research. They are denying that she should have been in treatment for Lyme because she was IgM positive but IgG negative. This is tragic on so many fronts. Of course there is little funding to develop better Lyme testing, because then it would be harder for the IDSA to manipulate the public.
Also, Community-associated Clostridium difficile is on the rise and their is great scientific debate about what the risk factors really are, including how much antibiotic use is a risk.
- January 25, 2011 at 1:02 pm
I am SO tired of the lies and deceit the public is receiving about LLMD's and the controversy over long-term antibiotics. By the time I was finally DIAGNOSED CORRECTLY, the Lyme & 3 other co-infections (Babesia, Bartonella and Erlichia) had me near death. That is not an exaggeration.
To complicate matters, I had mycotoxicosis from toxic mold that forced us to abandon our house.
I have an IV port – I am on my second one. Long-term antibiotics have saved my life. Literally. Because my conditions are complicated due to the "interweaving" of what damage is being done by which "bug", we have had to experiment with different regimes.
If I had to do it all over again? I would certainly want to get to the LLMD much sooner than I did, but I would not change one aspect of the treatment I am receiving.
I was misdiagnosed for six years, and the "toe-hold" these diseases had on my body would certainly not have been resolved with three – or six – weeks of oral antibiotics. The damage that they do to your body – particularly with the "watershed" of autoimmune diseases – make oral antibiotics often ineffective.
I am a LIVING example that long-term antibiotics can a) save your life and b) increase your functional ability. I'll take the odds any day.
- January 25, 2011 at 5:43 pm
According to the CDC, the Clostridium difficile–related mortality rate was 23.7 per million population in 2004. In 2004 the US population was 292 million.
That means that 292 times 24.7, or approximately 7,200 people died of Cdiff related problems that year alone.
That's a lot of people.
It's terribly sad that anyone dies of it, but we don't hear much about which diseases these people were being treated for…except Lyme.
- January 26, 2011 at 2:00 am
Nancy, that is an interesting point, c. difficile is a big problem that should be dealt with across the board. Here, though it is one case and the spotlight is on Lyme–it is a way of distracting people from the real issues in Lyme.
Thanks for your comment.
- January 26, 2011 at 2:04 am
I missed the IgG and IgM point. That's an issue.
- January 26, 2011 at 8:30 am
I never understood this illogic of dismissing anecdotal evidence out of hand. When thousands of people say something, it should be investigated.
The other side does seem to label our stories as anecdotal and dismiss them, while then going on to accept those other anecdotal stories that agree with them.
- January 27, 2011 at 5:06 pm
Just another case of supposedly intelligent people proudly displaying their confirmation biased opinions in order to sway public opinion. What are they so afraid of? And what are they going to say when the truth is unveiled contrary to their published opinions? They will say they did the best they could with the information available at the time…which will be an admission they were too ignorant to be publishing any opinion in the first place. The IDSA is either ignorant of their ignorance, or untruthful about what they know that we do not know. Either one is bad for public health.
- January 31, 2011 at 3:15 pm
I'm not surprised by this report, nor the comments on it.
When the Chicago Tribune published their article about chronic Lyme disease being a dubious diagnosis, I began analyzing it step-by-step and pointed out many flaws while applying Carl Sagan's Baloney Detection Kit.
"Argument from adverse consequences (putting pressure on the decision maker by pointing out dire consequences of an “unfavorable decision”)
The authors engage in culture of fear tactics designed to encourage the public to get upset about the use of long-term antibiotics by focusing on the negative outcomes of their use for Lyme Disease without focusing on the positive outcomes of treatment and the fact that antibiotic use for other conditions has the same risks."
See the rest of the deconstruction at:
It would be nice if someone would put the entire truth out there – unbiased and unvarnished.
- February 1, 2011 at 10:50 am
Good points, Camp Other. I will look up Sagan's Baloney Detection Kit…sounds helpful for getting through the mire of misinformation.
So far, I think 'Cure Unknown' by Pamela Weintraub is the best attempt at the "entire truth", even though she has her personal biases, they are stated and she presents the viewpoints of the other side, as well as areas that are still gray.
- February 1, 2011 at 11:55 am
Camp Other…just checked out your blog. Excellent!
- February 1, 2012 at 4:09 am
I still don’t understand why the lies and misleading articles. Is it simply to benefit the insurance companies? Why go to these lengths to avoid the truth? People suffer needlessly and even die, because of money? or is there something else I’m missing?
Misdiagnosed for 9 years and I’m living a kind of hell.
I don’t have an official diagnosis (but through elimination and a long phone interview, Lyme seems all that is left…and I have all the classic symptoms of late-stage Lyme), since the nearest LLMD is 6 hours away, but I’m working on it. People like myself need help urgently, we don’t need to fight the medical establishment as well as the disease.
- July 30, 2012 at 10:09 pm
It’s all about a financial interest.
The insurance companies don’t want to pay for long-term antibiotic treatments, they overly expensive (sometimes exceeding $20,000 a month).
Whilst syphilis is a persistent infection (spirochete infection) that clearly damages the body if it’s not treated in its early stages, then so is borreliosis. Late stage lyme disease has very similar symptoms to tertiary syphilis (except the skin rashes) – all the other neurological, psychiatric, joint damage, heart illnesses do occur.
They’re hiding the truth about Lyme Disease for obvious reasons – Lyme induces a series of probably 300 – 400 disease (some of them chronic and severe). All these Lyme induced illnesses require treatments, that are not cheap (who benefits of of the money paid on these treatments?)
The government and big pharma! Now we’re more clear…
If Lyme Disease and other infectious diseases would be recognized, they’d be losing huge amounts of money, they WILL NOT recognize lyme disease. EVER!
Think about it, almost 90% of the people with MS, ALS and other neurological illnesses will turn their backs on their neurologist, probably a billion people world-wide would quit going to their psychiatrist and start treating their infections (almost all systemic and chronic infections cause mental illness, including candida yeast).
They’re not IGNORANT, they’re greedy!
- November 12, 2013 at 2:19 pm
If you think you might have chronic Lyme, don’t mess with AMA trained doctors. The only effective thing you can do is to self-treat with antibiotics. You don’t need insurance coverage or even a diagnostic. You can buy appropriate antibiotics off the internet. I’ve been down the rat hole of AMA trained doctors, and they don’t have a clue. Do your own research, and stay away from “holistic” nonsense. You’ll need major concurrent antibiotics like Clarithromycin, Hydroxychloroquine, Levofloxacin, and anti fungals like Nystatin. Be sure to do 50-70 billion units of pro-biotic every day while on antibiotics. To hell with doctors. They’re nothing but vampires.
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