“The debate over chronic Lyme disease — what the CDC calls “post-treatment Lyme disease syndrome,” affecting 10 percent to 20 percent of patients — reflects two polar viewpoints on Lyme: On one hand, it is a disease that is difficult to catch and easy to cure; on the other, it is a long-term threat that withstands medicine’s best pharmaceutical defense.”
Dr. David Heitz Healthline
“These are high-functioning people — couch potatoes don’t get Lyme disease,” he said. “They are not crazy, and the doctors who treat them are not evil. These are desperate people trying to get better, and well-intentioned doctors who are trying to help them.”
Dr. John Aucott New York Times
When a person is diagnosed with cancer, even strangers show compassion and sympathy. Family and friends gather in support while doctors take extreme measures to find treatments to cure and/or treatments to alleviate the fear and suffering.
However, when a person is diagnosed with Lyme disease that does not go away after one to three weeks of antibiotics (depending on the medical practitioner), most everyone in that person’s life – many times even the patient themselves is left in confusion and debilitating pain.
Unfortunately my story is common.
The first infectious disease specialist I went to see when I became too sick to function was part of the Harvard Medical School in Boston, Massachusetts. He agreed that all of my symptoms pointed to Lyme disease but I had already taken a 6 week course of Doxycycline and he was convinced that any infection would already be eliminated.
When I asked him about “chronic “ Lyme disease he said that he “didn’t believe in chronic Lyme disease” and refused to even test me for it. He prescribed pain medication and anti-depressants.
Five years later, still suffering and completely disabled by symptoms that had since been diagnosed as “chronic Lyme disease” by a Lyme specialist (who unfortunately left his practice due to the difficulties he had treating patients in Massachusetts, leaving me without a Lyme doctor), another infectious disease specialist, this time from Yale Medical School in Connecticut diagnosed me with “PTLDS” (Post Treatment Lyme Disease Syndrome.)
“Chronic Lyme disease” describes an active disease which continues to cause symptoms while “PTLDS” refers to a disease that has been treated but left behind lingering symptoms from damage that occurred during the active infection.
On the surface you can see how PTLDS just doesn’t make sense if someone is treated for the disease just weeks after being infected, and then suffers an increase in the number of symptoms and severity of symptoms. The logic is completely missing when there are three decades of peer-reviewed research papers that show scientific evidence of the bacteria persisting in animals (from mice to rhesus monkeys) who have been treated extensively with antibiotics.
In 2013 Dr. Keith Berndtson wrote in a peer-reviewed paper published in PubMed:
“Is chronic illness in patients with Lyme disease caused by persistent infection? Three decades of basic and clinical research have yet to produce a definitive answer to this question. This review describes known and suspected mechanisms by which spirochetes of the Borrelia genus evade host immune defenses and survive antibiotic challenge.
Accumulating evidence indicates that Lyme disease spirochetes are adapted to persist in immune competent hosts, and that they are able to remain infective despite aggressive antibiotic challenge. Advancing understanding of the survival mechanisms of the Lyme disease spirochete carry noteworthy implications for ongoing research and clinical practice.”
“Based on well-designed post-treatment animal studies and ongoing delineation of Bb’s mechanisms for host immune evasion and persistence, we can reasonably conclude that some, possibly many, chronic Lyme disease patients suffer from symptoms related to persistent infection with Bb. As inevitably happens in the evolution of scientific ideas, new research proves that the reality is more complex than we thought, and the time has now come to move beyond the divisiveness of the past into a more reality-based paradigm for research, education, and patient care.
The question is no longer whether LD can survive an antibiotic challenge in order to become a persistent infection. High quality studies show not only that it happens, but they also show how it happens, and why we should not feel surprised that it happens. Our task in the new era is to determine which patients suffer from persistent LD, and to keep pressing for evidence-based wisdom to guide the physicians called upon to treat them.”
Perhaps the time is quickly approaching when the facts revealed by ongoing research will end the debate, and replace opinion with fact and provide solutions for cured
The Lyme Disease Guessing Game:
The CDC changed their estimate of annual new cases of Lyme disease from 30,000 to an estimated 300,000 new Lyme patients each year in the US. However, according to Dr. Horowitz, that number is much closer to one or two million.
However, as was described in great detail under the Diagnosis/Testing section (add hyperlink), without accurate and reliable diagnostic tests, there has not been a way to permanently end the debate.
The two-tiered system requires a positive ELISA first and then a positive western blot; however, Dr. Sam Donta, who practices infectious disease at Falmouth Hospital in Massachusetts, has observed that 52% of patients with chronic Lyme disease are found negative by ELISA but positive by Western blot. His findings suggest that not only are greater than half the patients being tested receiving false negative results, but carries significant implications for the efficacy of the Western blot.
Lorraine Johnson, JD, MBA (Chief Executive Officer of LymeDisease.org) pointed out in a recent article, “Two-Tiered Lab Testing for Lyme Disease—No Better Than a Coin Toss. Time for Change that the CDC bases their satisfaction with the 2-tier system on a study of only 11 patients with late neurologic Lyme disease. Yet to enroll in the study, the patients had to first test positive. So of course all 11 patients tested positive again and conveniently gave the results that were desired. Ms. Johnson calls this “circular reasoning, a logical fallacy where the reasoning begins with the conditions desired at the end.”
Cost of Treatment for Lyme Disease:
It is tempting to end here with the research speaking for itself, but the issues around diagnosis and treatment affect more than just the patient, medical practitioners and medical researchers. It also affects who pays for the treatment of a disease that, if acknowledged, could cost up to $20,000/year according to Dr. Horowitz speaking at the 2014 Norvect Conference in Oslo Norway.
Are people with Lyme disease any less deserving of expensive treatment than people with cancer or HIV?
An illuminating article written in October 2014 by David Heitz, published by Healthline states:
A key player in this fray is the state Office of Professional Medical Conduct, which oversees physicians and is obliged to investigate all complaints against them. Statistics show half of 8,501 complaints filed for all reasons in 2010 came from the public, and a small number, 3 percent, were filed by insurance companies, which are feared and viewed with suspicion by doctors who treat chronic Lyme disease.
“Physicians who care for patients with chronic Lyme disease are often ‘red-flagged’ by insurance companies” for incurring big costs, said Dr. Kenneth Liegner, a Pawling Lyme specialist, at a May conference at Skidmore College in Saratoga Springs. They “risk being subjected to sanctioning and ‘de-selection’ if they participate with insurance companies.”
Hence, many don’t, requiring considerable upfront payment — from $650 to $1,800 — that limits care to those who can afford it. Treatments are also costly: about $750 a month for drugs and supplies alone, some covered by insurance, plus $1,000 to $3,000 to insert an arm catheter that feeds drugs to the heart.
While costs are hefty, there is no evidence that insurers have reported Lyme doctors — complaints are confidential — and two companies declined requests to comment. One physician said state licensing officials began a probe just after a claim for antibiotic treatment was questioned by an insurer. At the same time, the licensing office itself was found to have contacted patients of a Dutchess County physician several years ago to encourage them to file complaints, two sources with direct knowledge told the Journal.
Opposition to Treatment for Lyme Disease:
More than the apparent concern regarding cost of care, the major contention that IDSA leadership has with the doctors who treat chronic Lyme disease revolves around the necessity for long term antibiotic treatments.
Some find that hypocritical when there are medical conditions that are already treated that way such as treating teenagers with years of antibiotics for acne, or the need for years of antibiotics that are required for tuberculosis. So why the angst over Lyme disease?
Some believe it is the “tail wagging the dog” with insurance companies dictating to doctors what they will cover in treatment costs. Unfortunately this approach is pushing the problem off and making it bigger because many doctors observe that the longer a person is infected, the longer it takes to recover.
Physicians who treat chronic Lyme say that medicine is sometimes an art as much as a science that calls for practitioners to try things in the service of healing. Some use oral or intravenous antibiotics, or even a combination, sometimes “pulsing” drugs in a week-on, week-off rotation. Some add alternative therapies and vitamins. “Ultimately, you have to use your clinical judgment as a physician,” said Dr. Daniel Cameron of Mount Kisco, Westchester County. He frequently finds long-term oral antibiotics successful and prescribes intravenous drugs if needed .
At an outpatient clinic at Vassar Brothers Medical Center, about a quarter of the patients receiving intravenous medications are under treatment for Lyme disease, many for longer periods than the guidelines suggest. The guidelines, essentially treatment recommendations, do not preclude such care.
But Carmela Legari, the infusion center supervisor says, ”I’ve watched people come in who couldn’t walk, and then as the treatment continues you watch the symptoms slowly dissipate.”
Dr. Steven J. Bock, a family doctor and alternative practitioner in Rhinebeck, said he has treated 7,500 Lyme patients; he initially resisted the idea of antibiotics preferring alternative treatments. “When someone has been sick with a lot of multiple symptoms,” he said, “and then they go on antibiotics longer than the usual but they turn out on the other end 95 percent better — that to me is a clinical success.” He acknowledged that some respond better than others.
Dr. Kari Bovenzi, one of only a few pediatricians who treat advanced cases of Lyme disease, believes longer antibiotic courses are necessary to beat back the hearty Lyme spirochete.
“There is something about this bacteria … it is a survivor,” said the Albany physician, who began treating Lyme after her own Lyme infection in 2009. “It took lots of antibiotics and other treatments for me to feel I could think again.”
Dr. Richard Horowitz of Hyde Park (State),- who has treated more than 12,000 Lyme patients, the majority from outside Dutchess (State),- holds a similar opinion, saying this of those who will not recognize the Lyme problem: “They are basically saying Lyme is easily diagnosed, easily treated and (those with lingering problems) are dealing with an auto-immune reaction,” said Horowitz, who lectured on Lyme in China recently at the request of the Chinese government. Dr. Horowitz denied the popular opinion using information gathered from his vast experience. He sees more and more people becoming infected, and many coming to him when the 3 weeks of antibiotics fail to eradicate the symptoms. Also, Dr. Horowitz was convinced “beyond a doubt” that re-treatment (with antibiotics) helps the patients.
Medical Controversy Regarding Lyme Disease:
Tempers have become so extreme, and the positions of the factions are so firmly entrenched that some in the media call the debates about Lyme disease “The Lyme Wars”. Sadly it is the patients who are hurt the most in this controversy
But the stakes are high.
The doctors who are willing to take drastic measures to help people with chronic Lyme disease are often taken to court by other doctors who try to get their licenses taken away. Some of these cases cost upwards of a million dollars and in most cases the doctors are allowed to continue practicing medicine. Thankfully there has been legislation passed in dozens of states to protect doctors from these lawsuits, with even more states proposing similar legislation.
It is not just an argument regarding the chronic nature of Lyme disease. There is also the argument about treating people with months or even years of antibiotics, and the possible damage that could cause even though there is a precedence for using antibiotics for long periods of time with TB and even acne. Long-term antibiotics can be taken safely if taken responsibly, and people who don’t want to take that risk are still capable of exploring alternative treatment.
Adding to these hotly debated arguments are the medical doctors who just don’t have the time to get the answers. They are more ignorant than most patients about Lyme disease. It is understandable when you consider how very little time the average medical practitioner has to research specific diseases that are as complex as Borrelia. Good doctors are always very busy, and insurance companies require a certain time minimum AND maximum for each patient. So, it is understandable that a busy doctor would choose to pick up their IDSA (Infectious Disease Society of America) guidelines or go to the CDC website for answers.
Most physicians follow the guidelines closely, in particular as nonconforming doctors have been targeted for discipline. Adding to the ambiguity is the fact that many doctors simply have not taken – and cannot spare – the time necessary to fully understand Lyme disease and its accompanying infections.
Dr. Tom Grier, a microbiologist who was forced to put his career on hold due to Lyme disease said in 2010:
“Just one brain-autopsy that finds spirochetes post antibiotic treatment, can disprove the misguided position that a few weeks of antibiotics is sufficient to “cure” Lyme disease, and that work has already begun.”
There are over one hundred peer-reviewed articles in medical publications by researchers who have found active Borrelia infections after antibiotic treatments in mice, rabbits, monkeys and humans.
In spite of this evidence, Dr. Alan Steere, the head of the IDSA and the top authority on Lyme disease at Harvard University and for most every infectious disease MD states emphatically:
“There is no evidence that the Lyme bacteria are resistant to any of the antibiotics commonly used to treat the infection. In rare cases, additional therapy beyond the recommended doses may be used for brief periods of time (typically one month). However there is no evidence that additional treatment with any antibiotic results in improvement of slowly resolving symptoms.”
Contrary to Dr. Steere’s assertions, Dr. Berndtson shares his findings on how Lyme disease evades antibiotics. In his 2014 publication, he writes:
The illnesses resulting from such transmissions can produce polymicrobial infections whose interaction effects pose serious challenges for researchers investigating the etiopathogenesis of tick-borne illnesses, and for clinicians who would diagnose and treat the illness dynamics caused by them. Some aspects of the morbidity seen in post-treatment Lyme cases are likely caused by post-infectious immune processes, but this line of research is not the subject of this review. This paper reviews the known and suspected mechanisms by which Bb evades the immune systems of animal hosts. The review sections cover notable capabilities of the Bb genome, which encodes Bb’s ability to:
- Exploit tick salivary proteins to delay early host immune responses.
- Deceive alternative complement pathways by masking surface antigens.
- Usurp the host’s plasminogen activating system.
- Continuously vary its surface antigens to frustrate humoral immune responses.
- Translocate using uniquely agile motility skills.
- Use chemotactic and niche-seeking traits to evade host immune traffic.
- Engage in quorum sensing and in biofilm-like behavior.
- Upgrade its genetic code through horizontal gene transfer (HGT).
- Assume atypical morphologies that differ from its spirochetal form.
- Potentially form persister cells able to tolerate antibiotic challenge (thus far unproven).
Dr. Berndtson continues to write extensively on each of the points above citing numerous peer-reviewed publications that support his premise regarding chronic Lyme disease. In his conclusion, he writes:
Barthold et al134 demonstrated that neither standard nor more aggressive antibiotic treatments are able to clear persisting Bb from mice, implying that Bb survives antibiotic treatment by shifting into non-dividing or slowly dividing forms that retain viability, and possibly infectiousness. Yrjänäinen et al136demonstrated recalcitrant Bb infection by inducing immune inhibition. Embers et al138 demonstrated that viable Bb persists in nonhuman primate tissues despite antibiotic therapy, which is currently viewed as adequate for achieving complete eradication.
This evidence confronts physicians with a dilemma: we know that viable and infectious Bb can survive an aggressive antibiotic challenge, yet we lack the evidence needed to guide us on how best to treat a persistent infection of this kind. As a result, paralysis on the part of physicians will continue, and patients will suffer for a lack of physicians willing to design an empirical care plan for a persistent infection that is difficult to document and treat.
During the same period of time, a new study published in Emerging Microbes through a team funded by John Hopkins University and headed by Dr. Jie Feng has drawn solid attention from the doctors on the front lines of treating Lyme disease as well as mainstream medical professionals.
The irony of this important research is that the “persister” spirochetes are the focus of the study; the very bacteria that “persists” in spite of antibiotic treatment; the very bacteria that causes chronic Lyme disease. And yet not once does the report actually validate “chronic Lyme disease”.
The researchers continue to call the disease that continues with persistent bacteria “Post Lyme Disease Treatment Syndrome” which is the term initially used by mainstream doctors to describe the mysterious symptoms that continue in spite of treatment – explained away as residual damage caused by the initial infection that was conclusively cured by 3 to 4 weeks of antibiotics. So how do these highly specialized researchers keep a straight face while discussing two opposing points of view as if there were no contradictions?
In their own words from the John Hopkins study:
“Findings that suggest the continued presence of B. burgdorferi in some form indicate that current Lyme disease treatment may not sufficiently eliminate B. burgdorferi persisters or that the immune system fails to clear persisting organisms or bacterial debris, which may be the underlying cause for those who suffer from unresolved Lyme disease symptoms. These factors may also be responsible for antibiotic-refractory arthritis, as suggested in a murine model in which spirochetal antigens appeared to persist around cartilage. To date, there is no effective antibiotic treatment or preventative strategy for those who suffer from persistent symptoms after contracting Lyme disease.”
“The problem of persistent B. burgdorferi infection has been difficult to study for several reasons, including difficulty culturing the persisting organisms after antibiotic treatment; inability of the current antibiotics, doxycycline and amoxicillin, to kill the persister organisms, as demonstrated in various animal models; and a lack of antibiotics that are effective against B. burgdorferi persisters.
While concern remains whether PTLDS is due to persisting organisms, identification of antibiotics that have activity against B. burgdorferi persisters we feel should prompt testing of some antibiotic combinations that could impact either persisters if they exist or presence of antigenic debris, and by whatever mechanisms, study whether such an approach may lead to improved clinical outcomes in Lyme disease including Lyme arthritis or patients with PTLDS.”
This curious turn of events is a marvelous victory for those of us who suffer from persistent Borrelia, chronic Lyme disease is being admitted to here whether or not it is called CLD or PTLDS. Thanks to this research, there is emerging hope that instead of being thrown out of the Hospital (and being told it is all imagined pain our head), we may be treated as serious patients with a serious condition who needs more antibiotics NOT less.
Heitz, D. (2014, October 7). ‘Chronic Lyme Disease’ Debate Reaches US Capitol. Retrieved December 7, 2014, from http://www.healthline.com/health-news/lyme-debate-reaches-capital-100714
Brody, J. (2013, July 8). When Lyme Disease Lasts and Lasts. Retrieved December 7, 2014, from http://well.blogs.nytimes.com/2013/07/08/when-lyme-disease-lasts-and-lasts/?r=1
Berndtson, K. (2013, April 23). Review of evidence for immune evasion and persistent infection in Lyme disease. Retrieved December 7, 2014, from http://www.ncbi.nlm.nih.gov/pubmed/23637552
Emerging Microbes & Infections (2014) 3 , e49; doi:10.1038/emi.2014.53
Published online 2 July 2014 http://www.nature.com/emi/journal/v3/n7/full/emi201453a.html
Johnson, L. (2014, October 9). LYMEPOLICYWONK: Two-Tiered Lab Testing for Lyme Disease-No Better Than a Coin Toss. Time for change? – LymeDisease.org. Retrieved December 1, 2014, from http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-two-tiered-lab-testing-for-lyme-disease—no-better-than-a-coin-toss-time-for-change.html