0 xkcd on sickness and science

Taking a break from the critique of the Chicago Tribune article to post this comic from xkcd...

Credit: xkcd.com

I think that science has done a lot to improve doctors' ability to diagnose illness and deal with major trauma. Vaccines, modern anesthesia, pain medication, antibiotics, X-rays, CT scans, MRIs, chemotherapy, and advanced surgical techniques have saved many lives. Science still has yet to catch up in coming up with effective treatments and cures for some of the worst diseases in history, though, and has to leave politics and profit margins at the door.

When we look back on this moment in history, we may be shocked at the degree that last bit played in decisions that affect future generations to come. What happened to the role of science in basic research, and how can we return to that role?

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0 Part 4: Critique of Chicago Tribune's "Chronic Lyme Disease: a dubious diagnosis"

[ Ed. - This is part 4 of a multi-part critique of the Chicago Tribune's article, "Chronic Lyme Disease: a dubious diagnosis".]

"Tell people often enough that their pain is in their head, that their debilitating symptoms are medically unexplainable, and they will endure just about anything for a solid diagnosis and a possible cure."

This paragraph alone can be the subject of several doctoral dissertations.

This is a two-sided problem. On the one side, patients can be told that pain is in their head when the doctor cannot find a cause for their pain. On the other, with the introduction of managed care and ten minute diagnostic triage appointments, a lot of family doctors have limited time to do a more thorough investigation of the cause of pain in their patients - especially when the cause is not obvious.

A patient without an obvious cause for their symptoms may be told their symptoms are caused by stress or depression, since those are such common outcomes of our modern lifestyles. So then they are treated appropriately, based on that diagnosis. But it may not be what is wrong. It could be other conditions or multiple conditions causing their symptoms.

Patients are diagnosed with the most common ailments in the population for their demographic, and the old medical saw is that when you hear hoofbeats, think of a horse and not a zebra. Meaning, don't go look for the more exotic cause of symptoms when it's mundane.

But the problem with this is that many family doctors think that Lyme Disease is exotic and rare - when it's not. When you refer to statistics linked to in part 3 of this critique, it's clear that there may be many more cases of Lyme Disease that go undiagnosed and unreported. And Lyme Disease is the fastest growing vector-based disease, surpassing West Nile Virus which everyone hears about in the news every summer as mosquito breeding season sets in.

Lyme Disease should therefore be considered as a differential diagnosis far more frequently than it currently is, especially in its acute stage - for if far more cases are caught and treated early on, the issue of whether or not there is Chronic Lyme Disease will be less likely to come up.

Setting this problem aside, though, the second half of the paragraph can be treated as a different issue, too:

"...they will endure just about anything for a solid diagnosis and a possible cure."

This is human nature. Anyone with uncertainty wants certainty. When anyone is sick and wants to get better, they need to know what they have in order to find a way to treat it - and better, cure it. But it is true that medicine and science do not always know what causes some conditions, much as we'd like them to have an answer for everything.

This does not mean that the symptoms are all in the patient's head, though. This means the simple fact that no one knows what is causing their symptoms.

When this really does happen, the patient does have an obligation to seek answers. They only have one life to live. But the patient also should not fall prey to the idea to try absolutely everything to fix their problem, because not everything is safe or effective or worth the risk they entail.

"In addition to being given antibiotics for months, people in search of answers and hope have allowed doctors to infect them with malaria, to treat them with weedkillers, to inject them with a heavy metal -- all for the promise of killing elusive Lyme bacteria."

 This is one of the things that is problematic about the Chronic Lyme patient community, from a scientific perspective and from a public relations perspective. Those patients who choose to engage in risky and unproven treatments are at risk of doing something worse (if not lethal) to themselves than managing and recovering from an infection, and in the process end up being representational of all Chronic Lyme Disease patients. Those who do not support the existence of Chronic Lyme Disease and those whom especially think it is a medically unexplained illness - one that may have psychological origins to boot - will look at the level of risk and kinds of risk patients are taking in these cases and consider the case clinched: These people must be crazy to try such things.

Using an unproven treatment for Chronic Lyme Disease such as Miracle Mineral Salts (MMS) is dangerous. Some patients choose to continue taking it, because they believe the FDA (which issued a warning on MMS) is working for Big Pharma and trying to shut down the use of their own alternative treatments because they want more money to go towards pharmaceuticals. The irony is that most Chronic Lyme Disease patients have tried antibiotics or continue to take antibiotics - the very same drugs which Big Pharma makes.

While more research is needed to determine the cause or causes behind Chronic Lyme Disease - since it might exist - more proven treatment is needed for this condition, too. Or at least more proven alternatives and some trust in knowing that when a drug or product gets a warning or is pulled from the market by the FDA, it is serious. The same FDA is often chastised for not pulling pharmaceutical drugs with serious side effects off the shelves sooner. Can we have it both ways?

"Around the country, chronic Lyme patients say they've spent tens of thousands of dollars each on therapies that made them sick for an illness they never had."

 Earlier, the authors stated that Chronic Lyme Disease is a disease which might not even exist. Now they are stating that Chronic Lyme patients are sick with an illness they never had.

There is more than a shade of difference between claiming something might not exist and never did. This is an oversight, and the authors should be more consistent to maintain their position throughout the piece.

One thing to note is that intravenous antibiotics on their own cost thousands of dollars, and oral antibiotics are considerably less. But this bit about therapies that make people sicker? Well,  truth is, if one truly has Lyme Disease (acute, late, or chronic - chose your label, it doesn't matter here), they will get sicker on treatment at first before they get better.

This is because when the bacteria die off, they produce a Jarisch-Herxheimer reaction to that die off. Patients will be more symptomatic and feel sicker while the bacteria dies off, then gradually improve. Lyme patients refer to this in their own terms as "herxing" and consider it akin to a badge of honor because it is a sign the antibiotics are working; even if they are feeling crappy now, at least they are finally on the road to recovery.

The problem in this is that some Lyme patients believe that every time they feel worse it must be because they are herxing. They may not be. They may be experiencing side effects from the antibiotics they are taking or some other medication they are taking concurrently. They may be feeling worse because of the infection's activity itself. So in their desire to feel bad because that means treatment is working,  patients will often endure terrible pain for a long time because it is the trial by fire one must endure to be well.

Which would be fine if it could be proven it is a good thing to be in a long bout of herxing - if herxing is in fact what is happening. It may not be. There is a possibility there are recurrent J-H reactions during the course of treatment, but this has seldom been documented by scientific research. Patients need to report to their doctors any change in their symptoms if they become severe or change dramatically or things get worse for a prolonged period of time and they aren't getting better. It might be the treatment and not the infection. It might be the infection is actually getting worse and the choice of antibiotic is the wrong one or some other medication is the wrong one.

Also, there is evidence that Herxheimer reactions can overwhelm the immune system and lead to serious problems and even fatality. So it is more something to be aware of and monitor, rather than be proud of enduring.

"Dr. Carol Ann Ryser, a Kansas City, Mo., doctor, has faced malpractice lawsuits from 11 former patients who say she misdiagnosed them with Lyme disease and harmed them with antibiotics and other medicines. Ryser's malpractice insurers have paid more than $2 million in settlements to former Lyme patients, court records show."

Reading this, any reader's impression is going to be,"this is not good". What was written about Dr. Raxlen earlier wasn't good, but this is worse. Seriously worse.

"Crystal Hotchkiss, a 21-year-old Kansas woman who sought treatment for pain, said Ryser misdiagnosed her with Lyme. Hotchkiss said she suffered a heart attack, vomited blood and spent three weeks in critical care in 2008 at a Kansas hospital after undergoing months of infusions of antibiotics and other treatments Ryser ordered, according to court records."

This also does not sound good. This sounds very serious, and something seriously went wrong. A heart attack and vomiting blood are not typical effects of Lyme Disease, nor are they typical effects caused by antibiotic treatment, either. To have a heart attack at 21 years of age is incredibly unusual.

From some Chronic Lyme patients' perspectives, they may think it is the infections Crystal had which led to her heart attack and vomiting. If so, wouldn't months of antibiotics have prevented such severe problems from happening if it were caused by the disease? Usually antibiotics lead to some improvement after several months.

Or, is it possible the antibiotics and other treatments were the cause of her heart attack and vomiting blood? Even if she had Lyme Disease?

"FBI agents raided Ryser's office, home and car in September 2009, carting away 211 patients' charts, computer hard drives and other files, Ryser said in a deposition in one of the malpractice cases. She has not been charged with a crime.

The Missouri medical board is seeking to discipline Ryser, alleging that she misdiagnosed patients with Lyme disease and overcharged them for unnecessary treatments that "might have been harmful or dangerous." One patient cashed in her 401(k) account to pay the $15,000 monthly fees for treatment, the board said."

Whether or not Chronic Lyme Disease exists is irrelevant in these proceedings. If Dr. Ryser did misdiagnose her patients and her treatments were unnecessary and caused harm, then that is worse than Dr. Raxlen's accusation of misdiagnosis alone.

There is a question of accountability and responsibility to the patient here to ensure their safety and take well-founded risks. The doctors who are treating Lyme Disease (acute, late, or otherwise) are just as accountable for their actions and the well-being of their patients as any other doctors are.

The fee of $15,000 a month - even when a patient uses intravenous antibiotics for the entire 30 days -  is extremely overpriced. After surveying Lyme patients discussing what they pay for intravenous antibiotics,  it is possible to get a month of IV Rocephin for $700 including supplies, and a month's worth of IV Zithromax for around $450 if taken every other day. A low of $300-400. a month was cited if patients are willing to mix and prepare all their Rocephin themselves. If the IV is fully prepared in advance, it's possible to pay closer to $2,000 for that Rocephin, too, depending on the supplier. Nine weeks of IV Rocephin and of Vancomycin can cost around $9000. when given in the hospital, and that is only that high if insurance does not cover any of it.

So if it costs a bit less than $4500. per month for two daily IV antibiotics in the hospital without insurance, where on earth is $15,000. per month worth of services and supplies coming from?

It sounds like the doctor is gouging the patient at that price, and I would be angry too given the prices I have just quoted - especially if I was too ill to work and perhaps didn't even have health insurance or the plan I had would not cover my treatment.

At that price, they'd better be treating people at the Ritz Carlton, with turn-down service and professional massage therapists and gourmet meals. But at best, they get a hospital bed with all the nifty buttons.

"Ryser denied the allegations in the malpractice cases and the medical board complaint. Her civil settlements included no admission of liability, said her attorney, Jacques Simon. "She treated them properly and the patients were getting better," he said."

There is no comment on this without further investigation of the patients and their claims, and more knowledge of the actual proceedings. 

"A handful of the promoters of chronic Lyme disease have criminal records. Bradford, who sounded the alarm about the Lyme "plague," pleaded guilty in September to a federal felony conspiracy charge. He admitted that he inflated fears about Lyme so he could sell drugs to treat it, even though they were never approved by the Food and Drug Administration, according to his plea agreement."

 Again, this is something I wish to point out about the authors of this article: They are taking the worst elements of the medical profession and alternative medicine scene in order to support their arguments against the existence of and treatment of Chronic Lyme Disease.

This is part of building a straw man argument, and it is also selective framing of the information available. Saying "a handful of the promoters of chronic Lyme disease have criminal records" means that it is also true that a majority of the promoters of Chronic Lyme Disease do not have criminal records.

Shame on Bradford, if it's true he inflated fears about Lyme so he could use drugs to treat it.

Why on earth make something that is bad enough even worse?

"Bradford, who is not a medical doctor, and his co-conspirators earned more than $400,000 from sales of the drugs, which were made with chemicals never intended for use in drugs for humans or animals, according to the plea agreement. One of the Lyme drugs, which Bradford called bismacine, contained the heavy metal bismuth, high levels of which can cause kidney failure."

Bradford is not even a medical doctor, and he used drugs that were not meant to be used in either humans or animals, and used bismacine, which can cause kidney failure. Frankly, this is unconscionable. This is a charlatan taking advantage of and preying on people who are ill and often already financially strapped.

"Bradford was no stranger to questionable medicine: He has a 1977 federal conviction for conspiracy to smuggle a banned cancer treatment.

Michael Harris, Bradford's attorney in the current Lyme case, said his client has a narrower view of the conspiracy detailed in his plea agreement. Harris said Bradford admits it was a crime that his family's company was not registered with the FDA to manufacture drug components, adding that the company earned less than $5,000 from the sale of bismacine.

Treatment with bismacine has had deadly consequences, according to the plea agreement. Beverly Wunder, a Kansas Lyme patient, lapsed into a coma after she was infused with bismacine in 2005. She died a year later at age 47.

Dr. John Toth, Wunder's physician, was indicted along with Bradford and pleaded guilty to a felony conspiracy charge in October. Toth also pleaded guilty to a state charge of reckless involuntary manslaughter in Wunder's death and served time in a Kansas prison."

As stated earlier: The doctors who are treating Lyme Disease (acute, late, or otherwise) are just as accountable for their actions and the well-being of their patients as any other doctors are. 

Some of these people treating Chronic Lyme Disease patients are not doctors at all but act as if they have the cure - and some of them are unscrupulous doctors who are using unproven and dangerous treatments on patients who are guinea pigs.

It is understandable to want to cure a disease and relieve oneself of symptoms, but is the treatment worth the price of admission if either a) so little is known about it it's impossible to say how it will affect the patient - or b) enough is known about it that the risks outweigh the benefits?

At least oral and intravenous antibiotics have had years of study behind them in general and it is known what many - if not most - of the risks are for their use. At least a doctor who understands how to test a patient to look for problems with their immune systems, deficiencies, existing medications, and other underlying conditions will have an idea of how to proceed with a treatment individually tailored to their needs and conditions. The random charlatan like Bradford has none of this skill and training - only the ability to sway patients to his side.

Dr. Toth here is the worst of the worst, in a way, because he was supposed to have this expertise and engender trust - when he used a treatment for Lyme Disease that was highly questionable.

It would be more forgivable if a patient had been warned of the use of antibiotics potentially leading to a serious C. Difficile infection that made them ill - at least the issue would be out on the table before treatment, and there are ways to help prevent such infections from developing or worsening. In this case, one shot of bismacine and it's over.

"In the state case, Wunder's daughter, Melanie Bezner, said in a courtroom packed with Toth's supporters that her mother never had Lyme disease.

"But a doctor's greed and disregard for medical regulations and the value of human life cost my mother hers and has forever altered mine," Bezner said." 

This is an element of the Chronic Lyme Disease patient community that requires explanation, but doing it justice is difficult: Most Chronic Lyme Disease patients who are receiving long-term antibiotic treatment from doctors do not want to see any of these treating doctors lose their practice, for if they do, there are fewer doctors they can turn to for treatment. So they will come to the support of those doctors who treated them and improved their health - even though they may have made a mistake in treating another patient.

Some of them may even think that in this instance, Melanie Bezner did not understand her mother's illness and was a Chronic Lyme denier if she would testify against Dr. Toth in court.

While that might be true, there is another possibility, too: that Dr. Toth was wrong. And did the wrong thing by Beverly Wunder, who at 47 should have had many years ahead of her.

It is unknown how much experience Dr. Toth has had in diagnosing and treating Lyme Disease and its coinfections, and also other conditions as well. But in this case, he made an error in judgment and the result was death.

It is fair to say that other doctors in other fields treat other diseases and get it wrong all the time, too. But in any of these fields, they must be subject to scrutiny and held accountable for their actions as Dr. Toth was, even if they did not harm other patients and helped many.

"Rather than be alarmed by doctors who have drawn scrutiny, chronic Lyme advocates have feted many of them, packed medical board hearings in support and appointed them to their boards.

Five of the 20 members of the medical advisory board of the Turn the Corner Foundation -- the Lyme group that says it has raised more than $4 million -- were disciplined by state medical boards or agreed to stricter oversight by state medical authorities in order to avoid misconduct charges."

As stated above: The doctors who are treating Lyme Disease (acute, late, or otherwise) are just as accountable for their actions and the well-being of their patients as any other doctors are. 

In some cases - such as disciplinary actions lodged against doctors who try to get insurance companies to cover intravenous antibiotic treatment for their patients - these are questionable charges, and in some cases, indicative of problems with the current health care system. But these disciplinary actions are in no way on the same scale of action when one is talking about medical malpractice and giving patients unproven treatments that can seriously harm or kill them.

It seems unusual to support such doctors given their histories.

And at the same time, more questions should be raised: How many patients have not been treated for Lyme Disease who later went on to be seriously harmed or killed by the disease or complications related to the disease? Does anyone have these statistics? Did the authors of this article investigate this side of the story, even if they did not write about it here?

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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.

Anyway...

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...]

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

[ Ed. - This entry is part 2 of the first entry of the critique on the Chicago Tribune's "Chronic Lyme Disease: a dubious diagnosis". ]

And so, when we last left off, the authors were conflating professional medical doctors who treat Lyme Disease with intravenous antibiotics with alternative healers and pseudoscientists.

The authors wrote:

"Google "ALS" and "treatment" and results include a site touting deer antler therapy for amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. Google "cancer" and "alternative treatments" and you'll find a "grape cure," among others. Message boards are packed with patients trading treatments, often including detailed prescription information."

What does this have to do with Lyme Disease, chronic or otherwise? What does this have to do with its existence as a disease?

The internet is an opportunistic market. Alternative treatments both proven and unproven are promoted and sold ad nauseum all across the internet, both for conditions modern medicine does not have a cure or treatment for and for ones it does.

Why single out Lyme Disease in the mentioning of this, unless there is something significantly different about how alternative treatments are marketed towards those with Lyme Disease?

"In this world, skeptics are vilified as part of a vast conspiracy involving tainted government agencies, drug companies, the media and conventional physicians."

So, in part 1 of my critique of this article, the authors mentioned that patients were seeing medical doctors in order to get diagnosed and treated for Lyme Disease - a treatment which entails antibiotics whether or not the condition is chronic.

Now the authors are talking about skeptics who are vilified (which skeptics? who are skeptical of what, exactly?) and that skeptics are part of a vast conspiracy involving tainted government agencies (which ones?), drug companies (which ones, and why, if antibiotics are the primary treatment used to treat Lyme Disease?), the media (which part of the media? any specific outlets?), and conventional physicians (which conventional physicians, and why are they being vilified?).

It's an awkward segue that requires a smoother transition: Why are the authors speaking about doctors who prescribe intravenous antibiotics at one point, then talking about skeptics who do not trust drug companies and conventional physicians at another? 

Antibiotics are the product of the modern pharmaceutical revolution and have made our lives better; physicians use them all the time to treat anything from a mild infection to life-threatening ones. If you're skeptical of Big Pharma and you're using antibiotics, then you have chosen the complicated position of recognizing that the pharmaceutical industry has its good and bad side and you are benefiting from it.

"Scientific studies are cited but are invariably of poor quality or misinterpreted. Patients are directed to small specialty labs offering tests that can be misleading."

Again, this is something I asked further upstream: Which scientific studies are the authors thinking of when they wrote this statement? Why are they of poor quality or misinterpreted? Could the authors find studies which both supported their position as well as studies which refuted it?

The authors provided no information, no citation or attribution to back their statement.

And which speciality labs offering these tests were patients directed to? Why were these tests considered misleading? Were they fully accredited labs? Did they pass inspections? What were their own internal operating procedures and standards? How well-trained were their technicians? On which data did they base their testing profiles? How did these labs compare to other labs on each point?

The authors decided to switch horses again, proving there is a possibly a 20-mule team involved and no longer a small carriage:

"And advocacy groups are aggressive and sophisticated about spreading their messages, raising money and influencing state and federal lawmakers."

What relationship does this mention of these advocacy groups have to any of what was just written about skeptics of the government, drug companies, and conventional physicians?

From what I have read so far, this is a separate issue. Those who are suffering from an illness that needs more research and fund-raising are by nature going to be aggressive and sophisticated about spreading their messages -- although I'd have to say "aggressive" is a pretty strong word the authors need to demonstrate.

Patients suffering from many different conditions and their families have had to repeatedly ask for more funding to fight cancer in all its hideous forms, to battle multiple sclerosis, to get attention for diabetes, and to petition the government to change its stance on issues such as stem cell research in order to improve the lives of many. The process for spreading awareness and getting support is no different for those patients and their families who are affected by less-understood and less-researched conditions such as chronic fatigue syndrome, fibromyalgia, Gulf War Syndrome, and persisting forms of Lyme Disease.

I charge that these things -- the treatment of Lyme Disease by medical professionals and those who are skeptical about Big Pharma -- are entirely separate from the issue of patients advocating for themselves.

"There is no better example than the world of chronic Lyme, a disease that might not exist and one for which the most common treatment, months or years of antibiotic use, poses a threat to us all by sapping the power of those drugs to fight disease."

The authors make the statement that Chronic Lyme Disease might not exist.  Which also means that it might exist, too. Either way, they still have not brought any evidence to the table demonstrating that it does or does not exist.

Because there is doubt inherent in the phrase "might not exist", if evidence does point to its existence, then by denying infected patients proper treatment, the authors condemn them to disease, suffering, and possibly death. If patients are infected, they need antibiotics. This is the purpose for which antibiotics were made - no one says it is a good idea to take someone off antibiotics in the middle of treatment for tuberculosis, and the standard treatment for that is many months of antibiotics - over a year of treatment sometimes.

And arguably, compared to the fraction of the population who are treated for Chronic Lyme Disease, there are bigger fish to fry when it comes to use of antibiotics: the modern factory farming system. Hundreds of thousands of animals are packed into crowded conditions and fed an ongoing diet of antibiotics from womb to slaughterhouse. This is where resistance starts on a large scale, and where change should first be addressed.

If Chronic Lyme Disease does not exist,  the authors have still not made any convincing argument proving it does not. So far, it is conjecture and opinion.

The article continues:

"Kimberly Frank describes herself as always "going, going, going" before she got sick about 10 years ago. At the time, she was running two bridal shops, raising her four children and caring for two foster children.

Then the Ingleside mother developed crippling fatigue and an array of symptoms that baffled doctor after doctor. She says a physician diagnosed her with multiple sclerosis. Later, a different one told her she had Lyme disease."

 This woman went to doctor after doctor. Either she didn't accept the diagnosis, or the doctor misdiagnosed her, or it was hard to diagnose her condition. Perhaps all of the above. How does the reader know which doctor is right?

By now, the reader may not be sure what to believe, but for anyone who has had their own battles in getting the proper diagnosis, this should be a familiar story.

"To feel better, Frank says, she has taken up to 76 pills a day. She says she has been on oral or IV antibiotics for three years. Two of her children also have Lyme, she says, and have been on antibiotics."

Seventy six pills?  How many of them directly relate to her Lyme Disease versus other conditions? How many are supplements not prescribed by a doctor?

Did the authors interview her doctor? Do the authors have confirmation of her condition and that of her children? Do the authors understand which tests were taken and the medical reason given for treating with antibiotics?

"Frank, who runs a northwest suburban Lyme support group, told the Tribune in an interview that she suspects Lyme is "man-made" and was developed at the federal Plum Island Animal Disease Center in New York."

This kind of statement, unfortunately, is what makes any patient look a little cracked. When the fodder of Jessie Ventura's conspiracy theories are part of the interview - whether there is truth behind those conspiracy theories or not - the interviewee's credibility is questioned by readers.

Between statements about taking 76 pills and Lyme being man-made, the patient loses credibility, and by extension, the disease does - especially when the authors do not investigate the facts and let the statements remain without comment for the reader to make their own deductions.

"Frank says Lyme is tragically underdiagnosed, that tests endorsed by the Centers for Disease Control and Prevention are unreliable, and that research into the disease will unlock many mysterious and devastating illnesses."

 Here are facts that authors could more reliably research and report on, but do they? They do not. They do not even look, when just a few minutes using Google would tell them both sides of the story regarding CDC case definitions and surveillance of Lyme Disease, testing, and research done on testing for Lyme Disease.

[... to be continued... Part 3 coming soon...]

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0 Part 1: Critique of Chicago Tribune's "Chronic Lyme Disease: a dubious diagnosis"

Well, where do I even begin with this piece of poorly investigated, tabloid-style, sensationalistic, unfounded "journalism"?

There is so much. I think I'm going to have to dissect it over several entries, starting with today's entry.

Let's start at the very beginning and begin shredding the subtext, one section at a time, shall we?

"With a lime-green Lyme disease advocacy ribbon pinned to his dapper black suit, Raxlen joined partygoers sipping martinis below a stained-glass skylight bigger than most New York City apartments. Money was in the air. The "Unmask A Cure" gala invitation listed Goldman Sachs, New York Private Bank & Trust and Marquis Jet as sponsors. The event raised money for the Turn the Corner Foundation, a Lyme nonprofit on whose medical advisory board Raxlen sat."

Those with money are donating money at a gala for Lyme Disease. In particular, Chronic Lyme Disease. Obviously the authors thought it was a brilliant idea to show how well-heeled the backers were and somehow this was important to share and...why? Many charities have their own races for the cure and galas for the cure and telethons for the cure and they have their own sponsors and private backers. Breast cancer, anyone? This is no different, really.

And folks, you do know that Goldman Sachs has been encouraged to give up its executive bonuses during the past year and give more to charity, don't you? It was in the news earlier this year. I bet this is one of many charities Goldman Sachs gave to, rather than up their salaries again. Good for them, I say!

I would have to say that when it comes to the issue of funding for Lyme Disease research,  it would be more important to the reader to know if Turn the Corner was somehow misusing the money donated to them and not disclosing their budget to donors. Or to somehow find out that only a small percentage of their budget went towards actually, well, unmasking a cure.

But the Tribune authors weren't after that. No, they were looking for far, far lower hanging fruit. So low, in fact, that they were digging up root vegetables.

"The scene was light-years from the institutional brick building where the Connecticut Medical Examining Board was considering disciplinary action against Raxlen for the fourth time in 10 years. Raxlen had been accused of telling a woman dying of Lou Gehrig's disease that she had chronic Lyme disease, an illness that might not even exist."

So here we have a doctor who is on the board of a charitable organization to help find a cure for Lyme Disease (Neuroborreliosis or the chronic form) who has also had disciplinary actions against him four times in 10 years.

Does it make a difference to know what those actions are and what the outcome was? Were they minor disciplinary actions? Were they justified? Were they from insurance companies or were they from patients? Does he still have a license to practice or has it been suspended?

Of course, having any disciplinary actions at all on his record does not look good. But readers are lacking the full story here, which would have been good to investigate.

As it stands, the authors leave readers with the impression - intentional or not - that since Dr. Raxlen was accused of misdiagnosing one patient that all these other cases of disciplinary action on his record may also be about the same charge.  

Not so.

With a few minutes on Google, this information on Dr. Raxlen showed up on casewatch's site.  While I am not a huge fan of casewatch, the actual charges here can be verified elsewhere:

"The Connecticut Department of Health has disciplined him twice. In 1999, Raxlen was charged with (a) refusing to send a patient's record when the Health Department requested it, (b) inappropriately prescribing several drugs to a patient, and (c) failing to maintain malpractice insurance as required by state law. [...] He was reprimanded and ordered to pay a $20,000 civil penalty. In 2004, Raxlen was charged with failing to provide the records of 15 patients requested by an insurance company even though each patient had signed a written release. When the Health Department repeated the request, he submitted 13 records and stated that he had lost one patient's records. Under a consent agreement, he was reprimanded, ordered to pay a $15,000 civil penalty, and ordered to present new patients with a notice stating that he may be required by law to supply records to insurers and the Health Department. The New York State licensing authorities subsequently fined him $2,500 each for these cases."

Most of these are insurance and malpractice insurance related charges. And if the authors did a bit more research on the nature of such charges, there is a possibility that they may be related to arguments with insurers over coverage for intravenous antibiotics - which is just one example of many cases where insurers deny coverage, even when treatment is necessary.

Either way, having these actions on one's record is not great for the reader to see, and the one that sticks out in most people's minds is going to be that (b) part, about inappropriately prescribing several drugs to a patient.

What happened? More information there would probably be beneficial, as some tick-borne illnesses are treated with more than one drug simultaneously by all doctors, such as Babesia's gold standard treatment is taking both Mepron and Zithromax together. If a patient has not only Babesia but some other condition or conditions, they may be on many drugs simultaneously. Further investigation is warranted.

Was the accused doctor necessarily wrong about the misdiagnosed patient? Is it possible that a patient could have both Lou Gehrig's disease and Lyme Disease? Even if there are limited records of such comorbidity, isn't it still possible? Certainly a number of other medical conditions are known to have a high comorbidity, like people with diabetes often have heart and circulation problems, and people with HIV often have a number of other infections like pneumonia because their immune systems are weakened.

On a very basic level of reporting, even if I disregard all of the above, I have to wonder why the authors of this article didn't interview the Turn the Corner Foundation itself, and ask the rest of its members why Dr. Raxlen was on the medical advisory board with his record and why he was given an award for his services. It seems like major oversight to not have asked such simple questions.

And if after these interviews, the Tribune authors wrote that the Turn the Corner Foundation's entire advisory board was corrupt (highly unlikely), this still does not change the question of whether or not Chronic Lyme Disease is real and how one should treat it. These would be two distinctly different issues.

One has to ask why the authors of this article decided to highlight one doctor who has helped people with Lyme Disease who has also had disciplinary action against him without also highlighting one doctor who has helped people with Lyme Disease who has had no disciplinary action against him.

The simple answer is this: The authors have an agenda.

This agenda becomes clearer when you read the entire article and see that it is a position piece where the authors are discrediting the existence of Chronic Lyme and criticizing doctors (some of which do engage in questionable practices) and alternative treatments used to cure patients.

Carl Sagan's Baloney Detection Kit would say the authors are using this doctor as a "straw man" or caricaturing or stereotyping a position to make it easier to attack. The authors want this one doctor to be representational of all doctors who treat Chronic Lyme, and will use those doctors who have negative marks on their records to support their position against Chronic Lyme.

But just because this one doctor is being accused of misdiagnosing a patient with Lyme Disease and has disciplinary action against him does not remove the fact that:
1) people do have Lyme Disease,
2) people might have a chronic form of this disease,
3) other doctors misdiagnose patients with other conditions all the time, and
4) other doctors properly diagnose patients with Lyme Disease all the time, including more stubborn cases to beat as in neuroborreliosis.

Mentioning there is one doctor - heck, even several doctors - with a disciplinary record who have treated patients with Chronic Lyme Disease (whether you believe in its existence or not) neither proves nor disproves that the disease itself is real.

The authors continue:

"Lyme disease is real. The bacterial infection, chiefly transmitted by deer ticks, can cause rashes, swollen joints and inflamed nerves, and usually is curable with a round of antibiotics."

Well finally. Someone actually says something about Lyme Disease itself and the first statement is fact, and the first half of the second statement is fact, but the second half of the second statement is only partially true.

But I digress, let's continue...

"But doctors around the country are telling patients with common medical problems such as back pain, poor concentration and fatigue that their ailments stem from a chronic form of Lyme disease that can evade standard treatment and wreak havoc for years. To fight what they believe is a persistent infection, the doctors often order months or years of intravenous antibiotics, which can cost tens of thousands of dollars."

Which doctors? Where? Who did you talk to and how much clinical experience did they have? What were their medical qualifications and certifications?  Had they read the latest academic research from the United States and Europe on Lyme Disease?

Which symptoms did these patients have in common with Lyme Disease symptoms? What were their test results? What were their medical histories? Had they been bitten by ticks? Were they at risk of having been bitten, even if they did not see or recall a tick bite?

Can a chronic form of Lyme Disease evade standard treatment and wreak havoc for years? 

Nowhere in this article do the authors try to investigate this question, which is pretty much THE question underlying the piece. Or it at least should be, if the authors want to support their position.

Did you ask a wide variety of doctors and patients about their diagnosis and treatment? Did you find out if any patients are only using expensive intravenous antibiotics - or are they using oral antibiotics instead - which can cost as little as $50 a month? Did you ask doctors and patients about diagnosing tick-borne co-infections and how they can raise the cost of treatment because they require additional medication to treat?

It would have been nice to see some attribution for this section and the basis for what they did actually print.

"Strong evidence isn't on their side. But in a golden age of dubious medicine, that doesn't matter."

And here is the beginning of a slippery slope.

The authors have not stated what evidence there is to support the existence of Chronic Lyme Disease. Nor have the stated what evidence there is to prove Lyme Disease cannot be chronic. They have simply made the statement that strong evidence isn't on their side.

And to emphasize where things are going next, the issue of dubious medicine is introduced side by side with this first statement - a statement which isn't even verified and proven to be true.

Show me the evidence! Tell me what evidence they have and why it is not strong!

Carl Sagan's saying "baloney" again, right about now, in his grave.

Carl wrote that the following two items (amongst a list of more) are suggested as tools for testing arguments and detecting fallacious or fraudulent arguments:

• Wherever possible there must be independent confirmation of the facts.
• Encourage substantive debate on the evidence by knowledgeable proponents of all points of view.

Okay, Tribune authors? Fail. 

You just haven't made a sound argument here. You are making a statement without backing it up with facts. And so far, I haven't seen any sign of the debate on the evidence using knowledgeable proponents of all points of view.

"These days, advocates can raise big money to "Unmask A Cure" for a disease that already has a cure, and doctors disciplined by medical boards are held up as heroes. Legislatures around the country are passing laws to prevent medical boards from disciplining doctors who treat what they consider chronic Lyme with therapies that clinical trials have shown are dangerous and don't work."

 This paragraph is logically inconsistent in light of what the authors said earlier. First, the authors said Lyme Disease is real and it is curable. Then they said Chronic Lyme Disease is not real. Now they're charging that advocates are raising money for a disease that already has a cure - when "Unmask A Cure" is supposed to find a cure for Chronic Lyme - which they earlier claimed is not real.

Well, which is it? Is this a real disease or not? Please make up your mind.

They write that state legislatures are passing laws so that doctors can treat Chronic Lyme Disease without being disciplined without any explanation of why the state legislatures would do this nor providing the history behind these laws. Why would the legislatures of multiple states do this if it caused serious harm to their constituents?

By now readers must be wondering why the states would choose to protect doctors which the authors are trying to condemn. But they are never given the full story, and are instead led to believe these states are somehow misled and ignorant in passing legislation that permits doctors to use "dangerous and unproven therapies" on them.

Repeating that particular part of the paragraph:

"...that clinical trials have shown are dangerous and don't work."

Which clinical trials? How were they dangerous? Why don't they work?  How were the trials designed?  How many patients were enrolled in the trials? What were their backgrounds? What were the original premises of the trials? How was the data reported?

The reader is left wondering what happened at those clinical trials and will never know from reading this article. The reader will have to dig deep of their own initiative, if they aren't already full of disgust at this point.

Next up, the authors mention the Institute of Medicine in October. Incredible.

"In October, a New Jersey congressman entered into the Congressional Record a statement from three nonprofit Lyme groups chastising the federal Institutes of Medicine for a "pervasive lack of objectivity" when it comes to chronic Lyme."

They knew about this, and yet how could they write about this New Jersey Congressman's statement without mentioning the actual tick-borne illnesses workshop being conducted in October by the Institute of Medicine (IOM) where the statement was made?

That is the event this very statement was about! How could they do that and not even mention the research that was discussed there, including research that pointed to persistence of Borrelia burgdorferi spirochetes in tissues and collagen? (The above link takes reader to a list of webcasts for all the presentations given at the IOM that day - something the authors could have easily cited and linked for more information.)

The next paragraph seems like a non-sequitur. The authors leap from discussing medical doctors and their records to suddenly switching horses and discussing alternative healers and unproven cures; from discussing the use of intravenous antibiotics and pharmaceutical drugs for patients who have Lyme Disease to patients who do not trust doctors and drug companies.

Um... What?

"Fueled by suspicion of doctors and drug companies, Americans are flocking to alternative healers promoting risky treatments and unproven cures. The Internet connects pseudoscientists with the desperately ill, trumpets I've-been-cured testimonials and often dismisses the results of clinical trials as the work of unsympathetic doctors corrupted by Big Pharma money."

So now we've moved on to conflating these doctors who treat patients with intravenous antibiotics for Lyme Disease with alternative healers and pseudoscientists.

Because, you know, when you've rambled off-topic already, you're on a roll and you might as well continue...

[ to be continued... part 2 coming soon...]

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0 Science journalist critiques Chicago Tribune Chronic Lyme Article

Last week, The Chicago Tribune posted an article,"Chronic Lyme Disease: A dubious diagnosis" that was intended to not only dismiss the existence of Chronic Lyme Disease, but also lump it in with discussion on a number of other issues that were not solely the domain of this disease such as doctors who make errors, unproven alternative medicine practices, and conspiracy theories.

The sad question I have to ask after reading it is this: Where is the science? There is nothing educational or informative about this article which reads like a sensationalistic tabloid piece that seems out of place in a newspaper like The Chicago Tribune.

Apparently, Paul Raeburn agrees with me. Or I agree with Paul Raeburn. Either way, he took this article to task today in the Knight Science Journalism Tracker for its lack of attribution and lack of drawing opinions from experts from both sides of the debate over the existence of Chronic Lyme Disease.

So far, only a few people have responded to Raeburn's critique, and most notable to the Lyme patient advocacy community was Pamela Weintraub, author of Cure Unknown. I look forward to seeing more intelligent comments there, and if possible, on the original article in the Tribune.

I have my own thoughts about this and will write more on it tomorrow.

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