Welcome to the Lyme Wars
Lyme disease infects a minimum of 300,000 people per year in the United States and millions more throughout the rest of the world. Symptoms run from mild lethargy to severe arthritis to heart disease to incapacitating mental dysfunction. Although tests have improved over the past decade, they are still not completely reliable, and antibiotics are only partially effective. Up to thirty-five percent of those infected will not respond to antibiotic treatment or will relapse.
Healing Lyme examines the leading, scientific research on Lyme infection and its tests and treatments, and outlines the most potent natural medicines that offer help, either alone or in combination with antibiotics, for preventing and healing the disease. A bestseller for more than a decade this new version of Healing Lyme has been significantly updated, fully revised, and expanded to reflect the increased understandings from extensive contact with more than 25,000 people affected by Lyme, including depth-treatment experiences. Healing Lyme is the primary text in print on what Lyme bacteria do in the body and how natural approaches can heal the disease. Below is an excerpt from author Stephen Harrod Buhner’s introduction.
In 2004, when I began working on the first edition of Healing Lyme, I did not expect to be entering a war zone. But I was. Unfortunately, in 2015, as I now revise that original book, I have discovered that the war, if anything, has intensified. The war is not, however, a conflict between human beings and Lyme disease organisms but a battle between people holding competing theories of Lyme disease and its treatment. During my review of journal papers published since the first edition of Healing Lyme came out, I was particularly saddened to see statements such as this one (Auwaerter et al., 2011) scattered among them.
Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudosceintific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.
Tick-borne Borrelia burgdorferi has been advanced by some as a frequent explanation for medically unexplained symptoms such as continual fatigue, musculoskeletal pains, and subjective neurocognitive dysfunction. Often called “chronic Lyme disease” by adherents of this philosophy, it is loosely defined, and practitioners liberally prescribe nostrums, including prolonged antimicrobial therapies… Proponents of this theory have developed their own meetings, literature, activist groups, and substantial internet activities to advance their views. …While neither logical nor evidence-based, “Chronic Lyme disease” harnesses corrosive energies that taint modern medicine and society.
Feelings have regrettably reached religious intensities among many. It has become, in most instances, a rather vicious conflict between different groups of specialists, all with differing paradigms, in all possible combinations: medical/medical, medical/herbal, and herbal/herbal. Caught in the cross fire are those with Lyme disease who are trying to understand what is happening to them and struggling to discover how best to deal with it. This is, in my opinion, reprehensible. The point, as too many healers have apparently forgotten, is finding the most effective way to help people heal. The purpose is not to be right about one’s pet treatment regimen or belief paradigm.
A broad review of thousands of peer review journal papers on Lyme disease rather easily reveals that much of the conservative medical world’s treatment is not based on any real understanding of the disease. It is, unfortunately, often based not on evidence or a clear understanding of the disease organisms in question but merely researcher or physician opinion. As Lee and Vielemeyer (2011) comment in their review of the Lyme treatment guidelines promoted by the Infectious Diseases Society of American (IDSA) between January 1994 and May 2010, “More than half of the current recommendations of the IDSA are based on level III [i.e., personal opinion] evidence only. Until more data from well-designed controlled clinical trials become available, physicians should remain cautious when using current guidelines as the sole source guiding patient care decisions.”
Most physicians are in fact basing their understanding and treatment interventions of Lyme disease on incorrect, inadequate, and ineffective information. What is disturbing is that the medical community as a whole appears to have little interest in rectifying the problem.
When I began my initial examination of Lyme disease in 2004, I expected to find a lot of research material on Lyme. And I did. (The intervening years have produced even more.) I expected that nonpharmaceutical approaches to treatment would not be included in mainstream medical practice — and this, too, turned out to be true (and still is a decade later). What I did not expect to find is that significant amounts of reputable research is being ignored by the mainstream medical community. But, I did, and, regrettably, it’s still true (though not quite as much as it was), and this troubles me considerably.
Science, though it often is, should never be the plaything of the powerful nor used to control the less powerful simply for the accumulation of power and profit. It is through this perversion of science that science and its practitioners lose the credibility they must have for science to continue to be used effectively in this world.
During the past decade, I and my partner, Julie McIntyre, have had contact with (in the neighborhood of) twenty-five thousand people struggling with Lyme or one of its coinfections. This contact has ranged from minimal email correspondence to in-depth work of a year or more for those with multiple infections and who are experiencing extremely damaging neurocognitive effects. During that time, we have worked as diligently as we can to deepen our understanding of this group of stealth pathogens as well as refining the sophistication of suggested treatment interventions. In the process, we have heard thousands of difficult and often painful stories of the toll the illness has taken on people’s lives. Regrettably, many of them included descriptions of disparaging, dismissive, and denigrating treatment by physicians (and sometimes alternative practitioners, most commonly naturopaths). Researchers who take the time to ask Lyme patients about their experience of medical treatment are continually told of such denigration. As Ali et al. (2014) have noted, “Negative experiences were associated with reports of dismissive, patronizing, and condescending attitudes.” These revelations are often accompanied by descriptions that include the exhaustion of life savings and terrible descents into nonfunctionality as technological treatment failed to help.
Despite our desires to do so, we have not been able to avoid the Lyme wars, nor will anyone who works to help those with Lyme disease. I wish there was an easy solution. There isn’t. The best I can do is to tell you that the conflict exists and that, as you explore the disease more deeply, you will hear a lot of conflicting things about Lyme disease. Some of it will, irritatingly, make little sense — you may begin to feel as if you have been researching the best dieting plan (“Only eat elk”). And if you are one of those whom a short course of antibiotics failed to help, or if you are a practitioner working with Lyme, you will spend a lot of time in the midst of the conflict.
You should understand up front that many conservative physicians will not agree with portions of the material in this book; in fact, some will disagree almost violently with it — especially on the subject of herbal medicines, which too many physicians still insist are holdovers from our cave-dwelling, prescientific, superstitious-laden past. (Point to keep in mind: There are no physicians who are trained in the use or understanding of herbal medicines while in medical school in the United States; doctors, as a rule, don’t actually know anything about them.)
Some herbal and naturopathic practitioners will have trouble with the material in this book as well, nearly always because they believe they are in possession of “the one true way” to treat Lyme and its coinfections. Nevertheless, the truth is … there is no one way to healing in the treatment of Lyme disease.
Over the past decade we have found that nearly everything suggested for treating the Lyme-group of disease organisms does help some people and does not help others. Sometimes a short two-week course of antibiotics can completely reverse the disease; sometimes it cannot. Sometimes herbal protocols alone will bring someone back to health, sometimes they won’t. Sometimes a combined antibiotic/herbal protocol is the only thing that will work. Sometimes this herb will help, sometimes that one. For other people, neither of them are any good.
Nevertheless, what I share herein in terms of treatment is based on what I have found by: (1) reading extensively through thousands of peer journals (the references in the bibliography are extensive), especially the work of microbiologists, field researchers, and herbal researchers in countries other than the United States; (2) my own (and my partner Julie’s) extensive contact and work with those who have Lyme and/or coinfections; (3) the reports of people’s experiences with various treatment interventions; (4) the reports of other practitioners; and (5) the historical use of these kinds of plant medicines (often over millennia) for similar conditions.
Healing is possible in Lyme disease, we have seen it over and over again — even in the most intractable cases.
There is hope, don’t give up.
A few Lyme war specifics
While things are definitely improving for the better, there is still far too much conflict about this group of disease pathogens. I will talk a bit more about this in different sections of the book but I will just briefly touch on four issues here: 1) rates of infection in the United States; 2) the mode of transmission of the disease; 3) their geographical range; and 4) the effectiveness of antibiotics.
For an extremely long period of time, the Centers for Disease Control and Prevention (CDC) in the United States refused to acknowledge how widespread, and common, Lyme infections were. In 2004 they insisted only 20,000 infections occurred yearly and that such infections were geographically limited. This led many physicians to dismiss their patients’ requests for Lyme testing and to insist that the many patients they were seeing with neurocognitive damage could not possibly have Lyme, a coinfection, or a post-Lyme chronic disease condition. So a great many off-the-cuff diagnoses were made, often attributing the symptoms they were seeing to early onset multiple sclerosis or Alzheimer’s disease, or psychiatric problems. Many people were inappropriately treated, others, egregiously, were involuntarily hospitalized in psychiatric wards.
Despite the fact that Jonathan Edlow (and other researchers) at Harvard, over a decade ago, noted that, “Epidemiologic data suggest that the actual incidence of Lyme disease could be as much as 10 times higher than CDC data indicate,” the CDC refused to alter its official position that only 20,000 new cases of Lyme were being diagnosed per year.
Nevertheless, in 2013, in response to tremendous pressure from activists and accumulating data from research, it altered its position. The CDC now notes that while there are around 30,000 reported cases of Lyme the true incidence is at least ten times that — some 300,000 new infections each year. A CDC release (August 19, 2013) commented that “this new estimate supports studies published in the 1990s indicating that the true number of cases is between 3- and 12-fold higher than the number of reported cases.” The most shocking aspect (for me) in that statement, is that the CDC has known this for 20 years but still refused to make it public until researcher and advocate pressure forced them to.
Secondly: Lyme disease is believed to be spread by ticks alone, the main reservoirs for the disease are considered to be mice and deer, and the disease is (still) considered to be geographically limited. Regrettably, this is just as incorrect now as it was in 2004. Although tick transmission appears to be, and probably is, the primary route of human infection, regrettably little research has been conducted on other routes of transmission — and there are other routes of transmission. For one thing, Borrelia spirochetes are present in a variety of other biting arthropods, such as mosquitos, mites, fleas, and biting flies, and transmission through some of these routes has been documented (e.g., Luger, 1990). Relevant, too, is the presence of coinfectious microorganisms in considerably more than those four biting insects.
Additionally, human-to-human transmission is a great deal more common than physicians realize. For example, Borrelia spirochetes, nearly immediately, colonize the urinary bladder of all infected animals — irrespective of species; they are then expressed out of the body in urine; Chlamydiae bacteria do this also. (You did wash your hands, didn’t you?)
The tendency for the spirochetes to heavily infect just this organ and to pass live out of the body through the urine is not happenstance. Organisms with the length of survival history as Lyme spirochetes do not “accidentally” colonize the urinary bladder and “accidentally” get expressed out of the body in urine. It is a mechanism of both survival and transmission that is common among many bacteria because it works. and it works very well.
To take it a bit further: When they are “starved” or attacked, Lyme spirochetes undergo alterations in their physical form. They change into an encysted form from which they can emerge when conditions improve. (Chlamydiae bacteria also utilize this survival strategy.) Ninety-five percent of starved spirochetes can encyst within one minute of expression. These encysted forms have been shown to remain viable for as long as ten months. Other types of spirochetes have been shown to be viable up to 2.5 years after encysting. Lyme spirochetes in their encysted form have been shown to survive both freezing and thawing and to still be capable of infecting test animals.
These encysted forms of the organism, because of the constant urination of infected animals, liberally cover the soil and plants in areas where Lyme disease is endemic. Animals that then take these encysted forms inside themselves through browsing on ground foliage can be infected by viable spirochetes; Lyme spirochetes do infect in the intestinal tract quite easily and can spread from there throughout the body (Chlamydiae organisms do as well). Reconversion to motile forms begins within one hour though it has taken up to six weeks for full reconversion in some studies. There is significant potential for spirochete transmission in urine.
Given this, it is not surprising that, despite contrary assertions by many medical practitioners, the spirochetes are also present in human (and animal) semen and vaginal secretions (e.g., Middelveen et al., 2014). This is why couples are commonly found to be infected with identical Borrelia genotypes.
A note here: Despite statistical analysis showing that couples were much more likely to be coinfected with Lyme Borrelia than random chance would expect and research that routinely discovered spirochetes (from other genera) in semen and vaginal secretions, no PCR analysis or studies occurred with humans until 2013 … another casualty of the Lyme wars.
Human breast milk has been found to contain Borrelia DNA (Schmidt et al., 1995). Again not surprising as spirochetes (e.g., Leptospira) routinely infect animal breast milk (Gordon, 1977; Bolin and Koellner, 1988). And further, spirochete antibodies have been found in tears (Parma et al., 1987), indicating bacterial activity in that medium. Again, no current research has taken this any further, as Middelveen’s team did with semen and vaginal secretions in 2013. (My exasperation levels rise again — all spirochetes utilize similar infection strategies, why is this so hard to understand?) Some of the Lyme confections are, as well, spread via these routes. (Chalymdiae, for example, are now considered to be one of the primary human STD organisms known.) Many of the Lyme-group of diseases, including Lyme itself, have been shown to be transmitted to babies in the womb.
The conventional medical insistence that transmission occurs through ticks alone has stalled research into other modes of transmission and the rates of transmission that occurs through them. These other routes play a much greater role than is currently recognized.
Third: A deeper look at this group of pathogens has found, unsurprisingly, that they are not nearly so geographically limited as many people have insisted. They are not just endemic to New England, the Wisconsin/Minnesota area, and Northern California. They are also endemic in the southeastern US, in the Ohio River Valley, in the Pacific Northwest, in Canada, in Texas, and sporadically throughout the desert Southwest. (The organisms are widely present in lizard populations who do in fact serve as reservoirs for the disease.) Most of Europe, especially the northern temperate areas, Eastern Europe, Russia, and parts of Asia, South America, northern Africa, and Australia/New Zealand are also endemic. Borrelia are also, counterintuitively, endemic in the Arctic and Antarctic. Despite insistence by numerous physicians and government bodies to the contrary, few places on Earth are exempt from global ecology.
And finally: Antibiotics are thought by most physicians to be highly effective in treating Lyme disease — and for many people they are. I do wish to stress this: for many people they are. The turnaround in symptoms for some of the very ill people who take antibiotics is, in fact, (no other word is appropriate here) miraculous. People have gone from being wheel-chair bound and incapacitated as to any normal life to fully functional after a proper diagnosis and a course of antibiotics. Unfortunately, an in-depth review of the literature reveals that antibiotics are not nearly as effective as they are purported to be. Studies show that the effectiveness rates for antibiotics run anywhere from 70–95% depending on the study (and the antibiotic). Rarely included in these statistics, however, is the fact that there is often as much as a 35 percent relapse rate. Additionally, live spirochetes are regularly found in people who have undergone repeated, very potent, more time-limited antibiotic regimens – and even in some who have take antibiotics long term. (Please see the chapter on chronic Lyme disease for more on this.)
The Lyme organism, and the coinfectious pathogens, are highly adaptable and able, in a large minority of instances, to evade antibiotic regimens — even those of long duration. Continual antibiotic dosing can sometimes keep the organisms at low levels in the body (or counteract borrelial inflammation), but studies regularly find that it often does not eradicate them. The longer a Lyme (or co-) infection is untreated, the greater the chance that it will not respond to antibiotic therapy. Given the difficulty of early diagnosis (the characteristic bull’s-eye rash only appears in about one-third of those bitten by ticks, only some bacterial genotypes generate it), the numbers of those who are treated within one month of infection are low. After this time period (one week to one month), the disease becomes progressively harder to eradicate.
I admit to a bias. In general I am not a fan of antibiotics, and I have written about their overuse and antibiotic-resistance problems in a number of my books, in most detail in Herbal Antibiotics, second edition, and The Lost Language of Plants. Antibiotics, like many pharmaceuticals, are terribly overused in the United States, and despite what advertisers say, our health as a nation is not the better for it. We are far down on the list of the industrialized nations in both life expectancy and our quality of life. Antibiotic resistance among some very dangerous organisms is a growing problem because of antibiotic overuse. And despite regular alerts from such organizations as the CDC, nothing seems able to slow that use in either hospitals or among physicians.
My standard criteria for antibiotic use, very different than the majority of physicians, is that they should not be used except in instances where there is a strong possibility of death or disability. Otherwise, as most bacterial researchers have stated, we will soon not have them as a treatment option at all. That has ramifications that few of us really wish to contemplate.
Nevertheless, the level of disability that can occur during Lyme infection makes the use of antibiotics warranted in this disease (even by my criteria). Again, antibiotics are spectacularly effective for many people. This does not mean they work for everyone or even a large majority of people who use them. It is, in part, that failure of effectiveness that drives the need for alternatives that are well considered and that can help in the treatment of the disease.
There is a reason so many Lyme sufferers seek out alternative treatments. It is not because they are insane, uneducated, overly hysterical, stupid, or gullible. It is because they are ill, they know they are ill, and conventional medical treatment has not worked for them. (Just because someone is ill does not mean that, as far too many physicians think, they have suddenly become stupid.) Too often, when they turn to their physicians for help after antibiotics fail, they are told it is all in their heads or that they will just have to live with their reduced functionality or that they actually are better – they just can’t tell. Too often they find themselves in the middle of the Lyme wars where the paradigm of treatment becomes more important than the health and happiness of the patients themselves.
Healing is possible in Lyme disease, we have seen it over and over again — even in the most intractable cases.
There is hope, don’t give up.
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