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?