Sunday, December 19, 2010

2 Part 3: Critique of Chicago Tribune's "Chronic Lyme Disease: a dubious diagnosis"

[ Ed. - This is part 3 of a multi-part critique of the Chicago Tribune's article, "Chronic Lyme Disease: a dubious diagnosis".]

When we last left off, our authors were claiming that people say that all diseases are Lyme...
"They are finding that people who are diagnosed with ALS, Parkinson's, fibromyalgia -- it is all Lyme disease," she said. "It is faster-growing than AIDS or cancer."
Who is "they"? How are "they" finding out that these people have Lyme Disease alone or Lyme Disease in conjunction with these other conditions?

I think part of the problem here is actually correlation and causation. While there are some cases of ALS which were later determined to be misdiagnosed Chronic Lyme Disease, patients have to be wary of leaping to the conclusion that all cases of ALS are Chronic Lyme Disease. Sometimes these diseases occur concurrently, and there is some speculation that certain conditions are caused by Lyme Disease. But until more research has been conducted, it cannot be said with certainty that all cases of ALS, Parkinson's, and fibromyalgia are in fact Chronic Lyme Disease. This is something that must be determined by research, because very similar symptoms can have different causes. This can also be determined by physicians who can do serological testing as well as offer a clinical diagnosis after looking at all differential diagnoses and perhaps antibiotic challenge testing.

Stating that Lyme Disease is faster-growing than AIDS or cancer needs a bit of clarification: Lyme Disease is the fastest growing vector-based disease in North America. 

In the next section, the authors begin to state a strange relationship between the Chronic Lyme movement, and data gleaned from uncited sources about infected ticks.

"Many of these ideas are central to the chronic Lyme movement, which has gained such momentum that support groups have popped up in just about every state, even though infected ticks live mostly in Minnesota, Wisconsin and the Northeast."
 It should be noted that data about infected ticks is important in establishing the existence of Lyme Disease as a whole, whether or not the reader believes in the existence of Chronic Lyme Disease. But here, the way the data is being used can leave the reader to believe that they cannot or are highly unlikely to contract Lyme Disease if they live in states outside the above endemic areas.

Bad authors, no biscuit.

You're doing the readers a major disservice, because they can contract Lyme Disease in locations outside of these states, and the actual rate of infection is suspected to be higher than reported through surveillance.

To their credit, there is some truth to the authors' statement and perhaps they tried to represent reality fairly, if they based it on this CDC map of Lyme Disease case distribution. However, if you look at the map, a fair number of cases are reported on the west coast, and the CDC has stated that Northern California and Washington state are seeing an increasing number of cases.

The CDC has also said that this surveillance data is incomplete, and perhaps 6 to even 12 times more cases are out there that go underreported in endemic areas - if the trend to underreport has continued through early 2000s. It is also important to note that the CDC has stated that "This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis."

In other words, the surveillance definition of Lyme Disease required for reporting it is not the same as the clinical diagnosis as found by a doctor. Certain criteria must be met to report the case to the CDC, but not meeting the surveillance definition does not mean the patient does not have Lyme Disease. And we're talking garden-variety, everyone-knows-it's-Lyme-Disease - not Chronic Lyme Disease. 

One way to cross-correlate this data from the CDC would be to look at veterinarian Lyme Disease reports on case distribution for the pets they see across the continent, since pets are known to romp in tall grass and get far more ticks frequently. Because veterinarians file more surveillance reports, this should give people a better idea of how prevalent these tick-borne diseases are in the ticks in different regions, and one could extrapolate the possibility of human infection from there.

"In Illinois, Lyme cases that meet the CDC surveillance definition and are reported to the government are rare, yet enough patients think they have chronic Lyme that multiple support groups exist around the state."
The authors report that cases that meet the CDC surveillance definition are rare. But again, the CDC has stated that the surveillance definition should not be relied upon for diagnosing Lyme Disease. Lyme Disease is determined by a clinical diagnosis.

It is possible that the number of actual Lyme Disease cases outstrip those which are diagnosed and reported for surveillance purposes. Given the rate of return on pet-related Lyme Disease cases, perhaps an investigation is in order to determine if Lyme Disease is being misdiagnosed and under-diagnosed in humans on a larger scale.

I think that if the Chicago Tribune wants to do an interesting investigative piece, maybe starting with an article on the difference in number of tick-related illness cases reported for pets versus humans and why that difference occurs would be fascinating.

And oh, Tribune, don't worry about whether it will sell or not - you could always frame it in terms of the Culture of Fear, and it will sell. Just consider how many eyeballs scanned articles on the TSA's new screening procedures and you see what I mean...

The authors switch horses yet again, dragging reins behind them:
"Robert Bradford, founder of the Robert Bradford Research Institute in California, has called Lyme the "potential plague of the 21st century," likening it to the Black Death, estimated to have killed one-third of the population of medieval Europe. Bradford said Lyme disease might be a contributing factor in as many as half of all cases of chronic illness."
 Who the heck is Robert Bradford, what is his research institute about, and why should the reader care? What are his qualifications? Why is his opinion on Lyme Disease important for them to know?

What is Bradford's evidence that as many as half of all cases of chronic illness have Lyme Disease as a contributing factor? That's a pretty major bit of news if true, and a lot of people will want to see the evidence.  The authors once again fail to give us the evidence he has or point us to resources where the reader can learn more for themself, regardless of the plausibility of Bradford's hypothesis.

Later on in this article, we learn what Bradford has to say should be taken with a grain of salt - but why mention him at all if that's the case?

But now we are getting more to the nitty-gritty of things, because the authors are calling in the experts...
"Yet the nation's largest professional organization for specialists in infectious disease scrutinized the evidence and concluded that there is "no convincing biologic evidence" for a Lyme infection that persists and continues to sicken despite the recommended treatment, usually a few weeks of antibiotics."
Which evidence did the specialists in infectious disease scrutinize? Why was it not convincing to them? What evidence do they have that Lyme infections cannot persist and continue to make patients sick despite a few weeks of antibiotics?

"Three panels of experts from that organization, the Infectious Diseases Society of America, and one panel from the American Academy of Neurology came to the same conclusion: The diagnosis is suspect, and treatment with antibiotics long-term is unsupported and risky."
 Who were these experts from the IDSA and the AAN? What are their qualifications? Do they have any conflicts of interest? Do they have any past disciplinary actions on their records? What kind of experience do these professionals have in treating patients and curing them?
"Even Dr. Allen Steere, the physician who discovered Lyme disease, agrees.

"I don't think of it as a mysterious disease that causes a lot of vague symptoms," said Steere, a professor at Harvard Medical School who has spent decades studying Lyme disease and sat on two of the expert panels. "It doesn't."
Now, I actually like this, even if I don't agree with everything Dr. Steere has had to say.  Dr. Steere is simply quoted as saying Lyme Disease doesn't cause a lot of vague symptoms. Patient reports on Lyme Disease show that there is a lot of overlap and commonality in symptoms between patients who are shown to have Lyme Disease.

If I wanted to be like the authors of the article, though, I could spend some time pointing out Dr. Steere's own history, too.

If the authors are going to point out Dr. Raxlen's disciplinary action history, it would only be fair to point out that the IDSA's own doctors have been under investigation and disciplined as well. Patients have taken several of the more prominent members to court themselves.

One of those well-known IDSA doctors, Dr. Allen Steere, has a history of patient complaints against him. Going back as far as 2000, many complaints were filed against Dr. Steere within weeks. Citing the New York Times:
"In recent weeks, Dr. Steere has become the subject of seven formal complaints and four letters of complaint filed with the Massachusetts Board of Registration in Medicine by patients who accuse him of misdiagnosing or mistreating their conditions and causing their health to worsen. Copies of their complaints were obtained by the New York Times.

Nancy Achin Sullivan, executive director of the board, said that she could not comment on the pending case but that 11 such complaints would be considered a high number."
So, see, one could write as if they have their own agenda against IDSA doctors if they just pick out one with complaints and disciplinary actions against them, much as the authors zoomed in on Dr. Raxlen. Surely there are IDSA doctors with no disciplinary actions against them and no formal complaints were lodged - just as there have been doctors who have treated Chronic Lyme Disease who have no formal complaints or disciplinary actions lodged against them.


The depressing thing about reading that entire article from 2000 is that it very well could have been written today.  

Nothing has changed in an entire decade.

You would think that the issue of whether or not Lyme Disease bacteria of any genotype could persist would be put to rest by now and we would have done research with major populations over longer periods of time by now - but no.

Some people think the debate was already resolved, but obviously others do not. It continues.

Moving along... the authors finally decide to mention something about those clinical studies they mentioned ages ago. Structurally, it would have made more sense had they written this section closer to the statement mentioning them on page 1:
"The evidence against the effectiveness of long-term antibiotic therapy is especially strong -- supported by four randomized, double-blind, placebo-controlled clinical trials."
What is the design of these studies? How many people were involved? Was there a healthy control group or did they have medical problems? Could any of the controls have had undiagnosed illnesses that would have affected the outcome? How long-term was the antibiotic therapy? Did the test group have any tick-borne coinfections that would have interfered with the improvement of symptoms under a treatment program used for Lyme Disease? How long were the patients followed up on after ending the trials? Were they examined and interviewed at regular intervals a year and several years after the trials?
"Patients in three trials receiving long-term antibiotic therapy did not do significantly better than those receiving placebos. In one other trial, patients receiving antibiotics felt significantly less fatigued than those receiving the sham treatment, though many of the antibiotic patients figured out they were receiving medicine, a grave flaw in the study."
More would need to be known about these three trials to make an assessment of how reliable the data is from them. The fourth trial may be beneficial to conduct again with an assurance that the antibiotic patients will not figure out they were receiving the medicine.

But here's the thing: What if the patients figured out they were receiving the medicine because they really did feel better? How do we separate their physical response to the antibiotics from their potential knowledge that they knew they did not have the placebo? How did they know they did not have the placebo?
"Dr. Robert Bransfield, a psychiatrist and president of the nonprofit International Lyme and Associated Diseases Society, said that the trials had too narrow a definition of Lyme, weren't representative of the typical patient and didn't treat the subjects with the proper antibiotics for enough time."
Is Dr. Bransfield correct or incorrect? What qualifications does Dr. Bransfield have? Does he know a lot about microbiology and Borreliosis? What is a case definition for Lyme which is suitable for trials? What is "the typical Lyme Disease patient"? And what are the proper antibiotics for enough time? How does one determine what those are and what the duration is?
"Lyme bacteria "do not dance to the three- to six-week rumba" of antibiotic treatment, said Raxlen, the Lyme doctor honored by the Turn the Corner Foundation, adding that scientists who say chronic Lyme doesn't exist are part of "the flat Earth society."
What is "The three-to-six-week rumba? In scientific terms, what does this statement mean? If Lyme bacteria do not "dance" this dance, what do they do, in microbiological terms? Dr. Raxlen could have done more to educate the authors on his view of Borrelia's life cycle, and by extension, the reader. Instead, he throws in a jab at the scientists who dispute the existence of Chronic Lyme Disease.
"I see a persistent population of very ill people that respond to aggressive long-term antibiotic therapy," Raxlen said. "It literally turns their lives around."
How many people respond to aggressive long-term antibiotic therapy? What determines success of treatment and how is it measured?

The authors could have interviewed doctors, patients, and their families and friends, to see if there were observable signs of improvement in patients treated with aggressive long-term antibiotic therapy.
"However, the clinical trials on long-term antibiotic therapy found it can cause serious, even life-threatening problems. In one study, one-fourth of the patients suffered severe problems linked to the treatment, including blood clots, infection and the loss of a gallbladder."

The authors are mentioning treatment that occurred during long-term antibiotic therapy during the trials involving intravenous antibiotics. With a little research, the authors would know that blood clots and infections are directly related to the use of PICC lines and intravenous drugs, and gallbladder problems are specifically linked to a drug commonly used to treat Lyme Disease, IV Rocephin.

What the authors fail to mention is that these risks would be present with any patient who is taking intravenous medication for any condition. They are risks present for many people needing intravenous medication at home as well as in the hospital.

In order to truly understand how risky treating Lyme Disease with intravenous antibiotics is, a study needs to be conducted to compare its intravenous treatment against other conditions which are treated using intravenous antibiotics and perhaps another study against the use of intravenous drugs in general.

Intravenous antibiotics are said to be useful for patients who have had proven neuroborreliosis and also those who have had digestive issues which prevent them from taking oral medications. Rather than prevent patients from using them entirely, if they are indicated for combating infection they should be administered with caution.

Also, with a little research, authors would know that many patients being treated for Lyme Disease and its coinfections are using oral antibiotics, which are lacking these risks. Partly because oral antibiotics are cheaper and more likely to be covered by insurance, but also because they are convenient to take and do not require special care from a home health care assistant or nurse. And for coinfections such as Babesia, oral medication in the form of Mepron and Zithromax is the gold standard for treatment.

"Given the lack of benefits, "why take needless risks with people's lives?" said Dr. Paul Lantos, a pediatric infectious disease physician with Duke University Medical Center who served on the latest Lyme disease review panel."
How do you know these are needless risks? How do you know there is a lack of benefits? Is this opinion based on four limited clinical trials? True, there are risks, but there are risks for any medical treatment. And if people might be able to get a persisting infection that requires more antibiotic treatment, which is worse: the risk of taking the medication or the risk of letting the disease progress? I admit, sometimes these things are a hard call, and sometimes the patient will lose either way. But if they are infected, and that infection carries serious consequences (especially if it is infecting the brain), then the risks are likely worth taking the medication.

"Last year, a 52-year-old chronic Lyme patient in Minnesota died after 10 weeks of antibiotic use allowed a drug-resistant strain of bacteria to develop. Two of her doctors found no objective evidence to support a Lyme diagnosis before a third prescribed antibiotics long term, according to a letter in the journal Clinical Infectious Diseases."
I love this stuff. Pure gold.

This is not to say I'm without sympathy. I am. I think what has happened to this patient is terrible. It is a tragedy, and I myself am afraid of taking antibiotics because of this possibility. But getting C. Diff isn't uncommon. It is the main risk associated with taking any antibiotic.

Usually, though, it doesn't kill you.

What the authors fail to say is that someone treating a urinary tract infection with a 10 day course of antibiotics can also get unlucky this way, and someone who has been in the hospital to get hip replacement surgery can be unlucky this way.

It is an unfortunate truth that contracting C. difficile infections can occur because antibiotics in a person's own system can kill enough of the "good" bacteria that allow existing "bad" bacteria like C. difficile to grow out of hand, produce toxins, and cause severe diarrhea. It is also unfortunate that in a study on nosocomial infections, 21% of all hospitalized patients were infected in the hospital with C. difficile infections. Sometimes these infections are caused by antibiotic use; sometimes they are spread by hospital staff themselves.

It is an unfortunate truth that hospital-acquired MRSA is on the rise, and also community-acquired MRSA as well. These infections aren't caused by antibiotic use, but have become more prevalent and harder to treat. A number of these infections occur around surgery and lead to extended hospitalization if not a return visit shortly after the patient returns home. Some are even fatal.

What needed to be pointed out is that much shorter treatment courses using antibiotics can also lead to infections which can be quite severe, and just being hospitalized puts people at risk for contracting an infection without any antibiotic use at all. By emphasizing this case of death from secondary infection that occurred during antibiotic treatment, the authors seem to be somehow treating Lyme Disease treatment as a special case where such a thing can happen - sadly, nothing could be further from the truth.

Oh, and the treatment for C. Difficile and MRSA? More antibiotics. Flagyl and vancomycin to start, for C. Difficile. Ironically, Flagyl has been prescribed by doctors to treat Chronic Lyme Disease.

No comment can really be made on the diagnosis either way, but if the patient truly did not have Lyme Disease or any other infection requiring antibiotic treatment, then this was a very grave error on the doctor's part. All doctors should make sure to rule out the cause of their patient's symptoms and if symptoms still point to Lyme Disease and/or other infections, look at those next. It is not revealed here how thorough a diagnostic workup and medical history analysis this patient received.

"Such use of antibiotics poses a potential danger to the public, as some of the drugs prescribed to chronic Lyme patients are society's last-resort weapons against deadly bacteria. The more we use antibiotics, the faster bacteria become resistant, making these lifesaving medicines obsolete. Already, drug-resistant bacteria kill thousands of people every year in the United States."
If Lyme Disease is the fastest growing vector-based disease and the treatment is antibiotics, then antibiotics are going to be used to treat it. That is what is needed - it's a bacterial infection. If Lyme disease can persist - or relapse - then it needs more antibiotics.

For some reason, the authors have singled out treatment for Chronic Lyme Disease as the major cause of antibiotic resistance in this piece, when other causes such as large-scale antibiotic use in factory farm feedlots is a bigger problem.

It should be noted that there are many medical situations for which long-term antibiotic use has been prescribed and there is no mention of them here: patients with HIV, immune deficiency conditions, and organ transplants are often prescribed ongoing prophylactic courses of antibiotics because of weakened immune systems; patients with tuberculosis are prescribed nine consecutive months (or more) of antibiotics to treat their infections; patients with severe acne are prescribed long courses of antibiotics; patients with sinus infections often get repeat courses of antibiotics to treat them.

All of these have varying levels of medical necessity which must be determined by doctors and discussed with their patients, but it is very clear in many cases that the benefits of antibiotic treatment outweigh the risks.

And if we're going to look at a trip into the medical bizarro world here, remember what your own primary care physician told you and what every label you've seen on your antibiotic bottle has stated in the past: "Take all doses of this medication even if symptoms improve and you feel better, and do not stop taking it early or your infection may become resistant and return". Why offer this advice unless stopping antibiotics is a serious issue?  By this logic, those patients who are on long-term antibiotics for specific reasons are probably better off continuing them.

 Why there has been doubt about the question of persistence in Lyme Disease in particular is never completely revealed here. It's mentioned as an opinion only, or relying on the opinion of experts - experts who do the same thing and do not prove that Lyme Disease cannot persist.

It is a curious thing to observe based on what is known about what bacteria can do, and curious based on what we have not learned as well.

It is already a pretty well-known fact that some diseases have a relapsing form. If untreated, these diseases can continue to cause waxing and waning symptoms that worsen with time. Some are even treated properly - like malaria - only to return some time later and produce the same symptoms over again.

The same is true of some of the strains of bacteria that cause Lyme Disease. Scouring of the internet will turn up that it's not only some Borrelia like Borrelia hermsii that can cause a relapsing-fever disease, but also a specific strain of Borrelia that is becoming more common, Borrelia miyamotoi. What if regular Lyme Disease blood tests reveal a person has Lyme Disease, but it cannot reveal that the person is infected with this particular strain that causes a relapsing disease which may require more rounds of treatment? Borrelia lonestari apparently can also cause a relapsing-fever-like disease.

True, what is written so far about these relapsing fever diseases is that a few rounds of a few weeks of antibiotics should cure the patient - which is still a shorter treatment length than those for which Chronic Lyme Disease patients  are advocating support. But existing research points to the possibility that Borrelia can persist in tissues and collagen long after it has left the bloodstream, and the hypothesis of persistence must be considered until proven to be false.

There is a lot that isn't being printed in the public about studies on Lyme Disease and Borrelia bacteria that people can find if they just read around PubMed and other research sites. It takes time to understand it, though, and it helps to learn how to read the research and not just read it. Part of the issue is in interpreting the data presented, and part of it is figuring out what is not said that needs to be known. (More on this issue to be explored in a future entry on "Bad Science".)

[... to be continued... part 4 coming up next...]


  1. This is interesting stuff. I contracted lyme in Manitoba in 1985. in 1991 I wrote Dr. Allen Steere, as my doctor here said there was no Lyme in Canada, Dr. Steere without seeing me sent me a letter that he did not know where I lived but that There is no Lyme in Canada and diagnosed me without seeing me and said I did not have lyme,
    Just a week ago I came across an article that said a researcher had read the info on line and proceeded diagnose the people who were on line.

  2. Hi Anonymous,

    Welcome to Camp Other blog.

    I don't know if you intended to respond to this post - I suspect you intended to respond on a more recent one about Lyme disease in Canada.

    I am finding your comment interesting, too. You contacted Dr. Steere and he told you there was no Lyme in Canada? I don't even think in 1985 they knew where the Lyme was and wasn't. It was a relatively new disease in terms of its recognition and surveillance.

    Dr. Steere should not have diagnosed you without seeing you. If anything, a doctor should have seen you if you had been bitten by a tick and were unwell... you could have contracted any of a number of infections, let alone Lyme disease. It is rash to jump to conclusions without collecting more data.

    What were the circumstances around your illness? Do you remember a tick bite and where you were bitten?

    Do you know what article you read about this researcher? Who was it?

    Interested in hearing more about what happened. How are you doing now, healthwise?


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