Lyme Disease General Information Packet (Version 1.1)
Thank you for your interest in the services provided by the Sound Clinic. We hope this document offers some answers to frequently asked questions. We also hope that it provides some insight into our philosophy as a clinic, as the philosophical alignment between patients and providers is an important part of an effective relationship. We also need it to function as a kind of informed consent. That’s why we are asking you to sign off on receiving it and why we have assigned a version number, which should match that on the signature page. With your help, we hope to improve future versions. Please take the time to read it carefully, more than once if necessary. We encourage you to share this information with others you know but we respectfully request that it not be posted online. Please don’t hesitate to contact us with any feedback or questions.
As much as possible, we strive to meet the needs of a broad spectrum of prospective patients. We make it our top priority to provide care that is both effective and affordable. But what we do isn’t for everyone. Lyme and related tick-borne diseases are inherently challenging when they aren’t caught early. Most patients caught in this situation soon discover that ‘conventional’ medicine has little to offer them. We feel that an aggressive and comprehensive approach that integrates the best prescription and ‘alternative’ treatments is a superior option for most patients. We don’t claim to know the only path to health for our patients but we do feel that we are offering an excellent combination of performance and value.
The term ‘Integrative Medicine’ gets thrown around a lot these days, mostly because health care consumers are looking for more natural approaches or have failed to achieve their healthcare goals using the conventional avenues. This can be at odds with the perspective held by the medical establishment, an ill defined but ultimately conservative entity that believes in a ‘standard of care’, which is driven by published research and the guidelines that come out of it. Guidelines are usually a good place to start, but one size doesn’t fit all. Non-prescription solutions often don’t get the space they deserve in published guidelines because there’s no pharmaceutical money to study or promote them. When following the guidelines doesn’t lead to recovery, it’s reasonable to reach for the next rung on the ladder. That may come in the form of more individualized treatment or returning to the diagnosis stage and casting a bigger net. In most cases it means going to a place where there is less published research upon which to base important decisions.
Most medical interventions carry some risk and some are obviously riskier than others. A big part of being a provider of medical care is weighing the pros and cons of different treatments in an attempt to create the greatest benefit with the least amount of risk. Because different people have different degrees of risk aversion, it’s important they be informed consumers. Unfortunately, we can’t know the future and so we must discuss risk and reward in terms of their relative statistical probability. But even that can be difficult to estimate in the context of all the variables at play in any given case.
One of the important questions is the probability of recovery. It should come as no surprise that those who are sicker to begin with are more likely to fail the more conservative treatments and more likely to relapse after a period of recovery. But even this is variable: a few cases that initially appeared as though they would be easy didn’t budge and a few others that looked like a lost cause made a complete and lasting turnaround. We feel that our overall success rate is very high by any standard. We feel that we are able to achieve higher levels of success because of our willingness to consider and address a greater number of variables. We would love to be able to prove that claim. But the complexity of chronic tick-borne disease is practically impossible 2 to reduce down to the kind of double-blind, placebo-controlled, outcome-based research study that has become the gold-standard of biomedical research. Misguided attempts to do so – such as the Klempner studies, which will be discussed later – have only contributed to the unnecessary and damaging controversy that has plagued the field for years.
The experience of treating over a thousand Lyme cases has made it clear that there are many variables at play. Bacteria called borrelia cause Lyme disease. But among all the cases we have treated, less than 1 in 50 were limited to this infection alone. An overwhelming majority was clearly co-infected with babesia. Those who have harbored borrelia for at least a few years almost invariably suffer from opportunistic secondary infections – pathogens that their immune systems might have been able to eradicate (or at least better contain) were it not for the immunosuppressive effects of the borrelia. A comprehensive program that addresses borrelia, co-infections and secondary infections while supporting detoxification will work more than half the time. For the remainder, we have other aces up our sleeves.
Unfortunately, many of these other infections are more difficult to diagnose than even the borrelia itself. There is no test for the biotoxins that these infections secrete continuously as a means by which to stay a step ahead of one’s immunity. Yet it’s equally clear that biotoxin burden is for many patients a greater contributor to symptoms than the infections themselves.
Laboratory Testing for Tick-Borne Infections and Related Diseases
Patients and providers alike yearn for better lab tests, both for the initial diagnosis and to monitor the response to therapy. Reliable objective evidence is also the answer to insurance denials, but it’s hard to come by. There is no perfect lab test for Lyme. It’s hard to understand the limitations of any testing methodology without understanding the meaning of two terms used to describe how accurate a test is. Sensitivity is the probability that a given test will come back positive in someone who has a given disease – a ‘true’ positive. A Lyme disease test with 80% sensitivity will come back positive 80 times if run on 100 people who all have Lyme disease. Specificity is the probability that a test will come back negative if run on someone does not have the disease. If the same test had 90% specificity and was run on 100 patients, none of whom had the disease, 10 of these patients would be assigned a false-positive result. In an ideal world every test would be 100% sensitive and 100% specific. In reality, almost none of them are. As a general rule, if you try to ‘raise the bar’ on a test in order to make it more specific, you simultaneously make it less sensitive.
The CDC recommends a two-tier testing process for Lyme disease in which only those who test positive on an ELISA will get the opportunity to get tested again on a Western Blot. Only those who test positive on both get a positive overall. This methodology makes sense when you have one test that is sensitive but lacks specificity (i.e. it can ‘catch’ the true positives but also has too many false positives) and another that is more specific and can thus be used for confirmation. Thus, a positive Western Blot confirms a positive ELISA. Unfortunately, both of these tests (because they are based on the detection of antibodies) tend to become, at least in some individuals, less sensitive as time goes on and antibody levels fall. Since a positive overall result necessitates testing positive twice, the problem of false negatives is compounded. By some estimates, more than half of those who have been infected long term will fail at least one of the two steps. For this reason, we do not recommend this two-tier testing approach. In fact, we do not recommend the ELISA at all. Instead, we favor going straight to an improved version of the Western Blot.
IgeneX lab specializes in tick-borne diseases and has taken steps to improve the sensitivity of the Western Blot. To better understand why this test is superior, it is necessary to understand a little more about how it works. The Western Blot detects antibodies which are proteins made by the immune system. Antibodies bind only to other proteins called antigens that are present on the surface of pathogens. Since antibodies only bind to specific antigens, it’s possible to infer from the presence of a given antibody what antigens the immune system has been exposed to. Some antigens are more predictive of exposure to a given pathogen than others. For example, an antibody that weighs 41 kilo Daltons (kDa) binds to an antigen that is present on the surface 3 of borrelia but also present on other spirochetes. Another antibody, weighing 39kDa binds to an antigen thought to be unique to borrelia. Someone who tests positive just for 41kDa is therefore more likely to have Lyme than someone who tests positive for neither antibody but less likely to have Lyme than someone who is positive for 39kDa. Stated another way, there are four possible outcomes if a person can be positive or negative for each of these two bands. Listed in increasing order of probability of having Lyme disease, they are as follows:
1. Negative for both
2. Positive for 41kDa only
3. Positive for 39kDa only
4. Positive for both 41kDa and 39kDa
Keep in mind that this is a simplification. The IgeneX WBs used twelve different antibodies instead of just two. The CDC version uses 3 on the IgM test and 10 on the IgG. This makes for thousands of possible outcomes. It would be ideal to know the real probability of every possible outcome but these turns out to be difficult to estimate with precision. So instead we end up with arbitrary cutoff points. But where is the right place to draw the line? How many anti-borrelia antibodies does someone need to have in order to be confident that they have the disease? It depends on how specific those antibodies are and how confident you want to be. If you lower the bar in order to miss fewer true positives you end up with more false positives. IgeneX has added antibodies 31kDa and 34kDa to their test because doing so makes it possible, by means of an alternate interpretation criteria they developed, to increase sensitivity (reduce false negatives) by about 16% while decreasing specificity (increasing false negatives) by only 3%. We think that 3% for 16% is a good trade-off, especially if you consider (as we do) that it is worse to miss an opportunity to help someone who has Lyme than it is to attempt treatment on someone who doesn’t. The 31kDa and 34kDa bands were removed from the CDC-recommended version because they were used in an ill-fated attempt to make a Lyme vaccine. Those who were vaccinated should test positive on these bands so they were removed to prevent false-positives on those patients. Since vaccinated individuals should remember being vaccinated, the bands probably shouldn’t have been removed in the first place. Since 31kDa and 34kDa are highly predictive bands, they should have been put back in long ago.
We know this information is technical and difficult to assimilate even for those without cognitive symptoms. Don’t hesitate to ask us questions and/or consult Dr Google. But since good information can be difficult to come by, and because it’s an important issue, we want to make one more point about the IgeneX Western Blot. Unlike other labs, IgeneX reports indeterminate bands. They label them ‘IND’ and don’t count them towards the overall interpretation. But what do they mean? As you may have guessed, it’s complicated. Antibodies appear on a Western Blot as bands. The relative darkness or intensity of the bands is reflective of the quantity of a given antibody present in the sample (Fig. 1). But even very small amounts of an antibody should be considered positive. So the threshold for being positive should be low – just high enough to be sure. So how do they decide where to set the bar? They compare it to a control. In the image, that’s column 1. Therefore, band 24 on column B must be interpreted as negative – after all, band 24 on the control column is clearly darker. But is this band truly negative? Would you be comfortable telling someone suffering from a Lyme-like illness that they don’t have Lyme if the diagnosis hinged on something this subtle?
The interpretation of the Western Blot is obviously very important. Like most Lyme-literate providers, we believe that the CDC has raised the bar too high for a positive result and many Lyme-infected patients are failing to clear it. The IgeneX interpretation criteria is more reasonable but ultimately still too conservative. If the ‘IND’ bands are counted as positive towards the IgeneX criteria then the interpretation comes into line with our clinical suspicion and also the findings suggested by Autonomic Response Testing.
FIGURE 1. An example of a Western Blot. Column 1 is a control positive and column 2 is a control negative. Columns A, B and C represent 3 different samples. The labels on the far left correspond to any bands in the sample columns that they are horizontally aligned with.
What other lab tests might be useful?
Imaging and laboratory testing are cornerstones of the modern conventional medical experience. Those who have sought care for even a few minor problems are accustomed to the routine of getting an x-ray, swab or blood draw. A scenario in which treatment decisions are based primarily on the results of these tests is also familiar to the providers. Part of the reason that Lyme is controversial can be traced back to the way it deviates from these norms. Most Lyme victims have mostly normal scans and blood work. As discussed above, this all too often applies even to the results of conventional tests for Lyme and associated coinfections.
Most medical students are still wisely taught to not order any test that doesn’t have the potential to change their treatment plan. It would be great if there were some lab test that indicated the presence, for example, of some chronic smoldering viral infection. There are tests for anti-viral antibodies for a lot of different viral infections and some correlation has been shown between the presence of some of these antibodies and symptoms consistent with the diagnosis of chronic fatigue syndrome. But most healthy adults have antibodies to at least one of the viruses. That makes it dubious in our opinion to dedicate limited resources to antiviral antibody testing – especially when it’s been our experience that about 90% of the time we can take chronic viruses out of the picture with about $100 in supplements. As stewards of limited healthcare dollars we don’t think it makes sense to spend hundreds or even thousands of dollars in lab fees looking for something that can be treated safely and effectively for a fraction of that price. A careful history, a thorough symptom review and ART (see below) is in our experience a more reliable means by which to determine who is most likely benefit from treatment.
It therefore becomes necessary to base treatment decisions on other kinds of information. Since the physical exam is usually also unrevealing, the history becomes an even more important part of making the diagnosis. Changes in symptoms are similarly important in guiding changes to the treatment regimen. Since even these elements can be highly variable from one patient to the next, the kind of clean decision points that both patients and providers would like to have are often hard to come by. In situations like this, it’s extremely valuable to have another clinical tool at our disposal.
FIGURE 1. An example of a Western Blot. Column 1 is a control positive and column 2 is a control negative. Columns A, B and C represent 3 different samples. The labels on the far left correspond to any bands in the sample columns that they are horizontally aligned with.
What is ‘Muscle Testing’ and how does it work?
For those healthcare providers who have committed themselves to the successful treatment of patients that fall between the cracks of the conventional medical paradigm, there is an emerging consensus that chronic infection is a dominant force. As discussed above, this reality is largely a function of the inadequacy of modern diagnostic testing as a clinical tool for the detection of chronic infectious diseases. A thorough examination of this phenomenon would require volumes, but ample published literature shows that the host’s antibody response to sophisticated pathogens is highly variable. Chronic, low-grade but active and clinically significant bacterial and viral infections often cannot be distinguished from resolved infections on the basis of antibody testing. Unfortunately, most traditionally trained physicians are under the impression that antibody test kits available through Quest and LabCorp represent the last word on the clinical status of infectious diseases. All too often, even antibody testing is prohibitively expensive or not commercially available for emerging strains of important stealth pathogens.
Increasingly, healthcare providers dedicated to this field use some kind of “muscle testing” to help them devise a treatment plan that is likely to be both effective and well tolerated. Perhaps best described as an adjunct to more conventional medical information gathering strategies such a history taking, reviewing symptoms and performing a physical exam, muscle testing as a phenomena was first documented in the 50s by a chiropractor named George Goodheart Jr. Goodheart observed that simply touching a diseased/dysfunctional body part caused a decrease in the apparent strength of muscles throughout the body. In the years that followed, he incorporated acupuncture and clinical nutrition into a comprehensive system that he named ‘Applied Kinesiology.’ For more information consider going to the website for the International College of Applied Kinesiology, www.icak.com.
Advocates of Goodheart’s paradigm often say that if he had been a physician he would have been awarded the Nobel Prize in medicine. While this may or may not be true, there is no denying that it forms the foundation of a number of different but related schools of thought which are utilized daily by hundreds of respected practitioners of alternative and/or integrative medicine. Even the ‘electrodermal’ testing methods such as Vega/Voll and Biomeridian operate on the same principles (more on this later).
When faced with the prospect of using these modalities in their search for better health, patients invariably want to know how they work. Answers to that question can be hard to come by since a thorough understanding requires working knowledge of graduate-level physics and physiology. Some aspects remain theoretical. Within the time constraints of an office visit, patients are usually left with a few nonspecific buzzwords like ‘energy’ and ‘resonance.’ This is good enough for some but the paragraphs that follow endeavor to provide a more substantive explanation.
Molecules generate subtle electromagnetic fields when they are exposed to energy. Since every different molecule is comprised of a different combination of bonds, you might say that every substance sings a slightly different song. A growing body of scientific research shows that humans and probably all living things are able to perceive these frequencies – to hear the songs. The best way to dive deeper into this phenomenon is to read ‘The Field,’ by Lynne McTaggart. This well-researched and highly readable volume is sure to change the way you look at the world.
Examples of electromagnetic field perception abound in the biology literature: sharks can hunt in dark murky water; birds know cardinal directions and turtles navigate with an instinctive understanding of both latitude and longitude. The mechanism by which information in the Field is translated into a neurological response remains to be elucidated. Dr Klinghardt (see below) says that a subclass of nerves was discovered in the skin but its function was never determined. It’s possible that these nerves, assuming they exist, convey information about the biofield to the central nervous system.
The next principle that must be understood relates to the physiological changes that stress creates in the body. Stress begins in the central nervous system but its effects are most easily measured elsewhere in the body. The most familiar application is the polygraph, or lie-detector test. For most people, telling a lie is stressful. That stress causes changes in physiological parameters like blood pressure, heart-rate variability and skin conductivity. ‘Electrodermal’ practitioners also take advantage of the fact that exposing people to the computer-generated frequencies unique to certain, say, nutritional supplements causes temporary changes in ability of the skin to conduct electricity. These changes can be observed with a voltmeter that is connected to the same computer. Muscle testing is just a different way of observing the same phenomena.
Various different healthcare visionaries have contributed to the art and science of muscle testing over the years, but perhaps none more significantly than Dietrich Klinghardt, MD, PhD, developer of Autonomic Response Testing (ART). Klinghardt’s strong background in physics and autonomic physiology provided the foundation upon which he built a more powerful and practical application. Klinghardt realized that what others thought was simply a weakening of muscles was actually representative of a change in the amount of stress present in the patient’s autonomic nervous system (ANS). This branch of the nervous system is well known to manage both the rest and digest (a.k.a. parasympathetic) and fight or flight (a.k.a. sympathetic) responses. Acupuncturists have been familiar with the two branches of the ANS for thousands of years. They refer to them as Yin and Yang.
We’re all familiar with the muscle tension that stress can bring, especially to the neck and shoulders. This is driven by the effects of autonomic innervation of microscopic ‘Golgi tendon organs’ that determine the gain (like setting the volume) for information feeding back to the brain about the amount of tension in our muscles. When the patient is exposed to the unique electromagnetic frequency of a pathogen that it is actively fighting, it will go into a stress response or a state of relatively increased sympathetic tone. Presumably this is because the body assumes that its enemy has just gotten bigger. Similarly, exposure to a beneficial frequency causes the opposite response because it decreases the level of stress. For example, if a person is infected with a fungus, the frequency generated by that fungus may cause a stress response in a patient and a remedy such as Caprylic Acid (which has antifungal properties) decreases or counters this same stress response. Once the correct remedy is added to the biofield the pathogen no longer creates a stress response so the muscle goes back to being strong. If the stress response is still present, the pathogen might not be vulnerable to the remedy or two remedies may be required.
Because he understood the electromagnetic and autonomic natures of the phenomenon, Klinghardt was able to improve the practical application in various ways. The clear blocks he calls ‘signal enhancers’ amplify the frequency of herbs, homeopathic remedies, drugs, foods and pathogens that they are in contact with, allowing them to be tested with greater reliability. His explanation for this phenomenon draws an analogy to a tuning fork. A tuning fork will also make another fork of the same pitch start ringing if the two are brought in close proximity. The blocks seem to be capable of ringing at whatever electromagnetic frequency – or singing whatever song – they are exposed to. Like nearby tuning forks, other signal enhancers sharing the same ambient light source will sing the same pitch. The underlying physics, like most in the quantum realm, are complicated and often counterintuitive. But the blocks have interesting optical properties; unlike glass, they don’t refract (or bend) light. From there it’s not hard to imagine that supplying the blocks with electromagnetic energy in the form of ambient light and then placing them close to the source of a given frequency might allow that frequency to resonate throughout the block, thereby amplifying it.
If necessity is the mother of invention, AK practitioners looking to find a way to test young children probably stumbled upon surrogate muscle testing – the use of a third person acting as an intermediary. The surrogate is in contact with the patient and the provider tests the patient through the surrogate. For some skeptics this has been the last straw. But when you understand the principles it’s not a big stretch. We’re all electrical and therefore electromagnetic beings, constantly emitting and perceiving all manner of signals. Since EMF signals get smaller logarithmically as the distance from the source increases, it’s easy to see how people in close proximity affect each other’s autonomic nervous systems much more than when they are further apart. Contact brings this communication to another level but since we’re not dealing with purely electrical signals, skin-to-skin contact isn’t necessary. It’s true that the surrogate adds another variable – and therefore a potential source of error – but a reasonably healthy surrogate enhances the reliability of the testing in several ways: first, by preventing a scenario in which the untrained patient, being tested directly, tries harder to overcome weakening effects of the frequency being tested; second, by reducing the influence of the doctor’s preconceived notions; third, by buffering any health problems the doctor may be dealing with; and fourth, direct testing can be exhausting to both parties and can even lead to shoulder injuries.
Sometimes the biggest impediment to a person’s growth or recovery is his or her belief system. Preconceived notions are everywhere and can be insidious. Our subjective experience of the world tells us important things about how to better interact with it, but it doesn’t tell us the whole story. Oxygen gas, for example, is invisible, odorless and tasteless but we wouldn’t live long without it. Seemingly solid matter is 99% empty space. Even the act of observing something fundamentally changes it. In the end, we are all more deeply connected to the world around us than we initially think. Coming to this realization is a step that we must all eventually take on our own individual paths toward greater understanding.
What to Expect Once in Treatment
We hope that patients will choose to give us six months to get them moving in the right direction. We estimate that about two thirds of all patients are in treatment for between 12 and 18 months. The remaining third is about evenly split between those who require less time and those who require more. Having said that, there are those who respond almost immediately and those who finally got better after more than two years in treatment. As you might expect, those who have had Lyme for longer or are older tend to be more challenging. But overall health at the start of treatment is a better predictor. The symptom questionnaire (see below) is a reasonably good way to gauge the severity of illness.
Anybody considering treatment for Lyme who hasn’t come across a description of the infamous ‘Herx’ response hasn’t done enough research. Technically named the ‘Jarisch-Herxheimer’ reaction after two German physicians who treated syphilis at the dawn of penicillin, the Herx is classically characterized by an exacerbation of existing symptoms in response to the initiation of effective treatment. Like Lyme disease, syphilis is caused by spirochetal bacteria. Killing this type of bacteria causes them to release endotoxins, increasing the body’s total toxic burden. Since most symptoms are secondary to the toxins released by infections rather than the infections themselves, it stands to reason that die-off of various different unwelcome microbes might exacerbate the symptoms that said microbes are ultimately responsible for. In contemporary parlance, the term Herx is also getting used to describe treatment-related adverse reactions to fungal, parasitic and sometimes even viral infections. Aspirin or ibuprofen can be helpful but we find that detox supplements and/or drainage remedies are especially useful for reducing the severity and/or duration of the Herx.
It’s worth remembering that a Herx response to treatment is not only confirmatory of the diagnosis of a chronic infection, but also of the efficacy of the treatment. Herbs and prescription antimicrobials may cause nausea, diarrhea or even a rash as a function of intolerance, but if they exacerbate existing symptoms, especially classic ones like a pain, fatigue or cognitive impairment, or if they seem to trigger a flu-like illness, it’s safe to assume that the patient is experiencing a Herx and the treatment is working. Generally speaking, the sicker someone is, the more toxic and heavily infected he or she is to begin with. It therefore shouldn’t be surprising that minimally symptomatic patients sometimes don’t Herx at all and sicker patients sometimes need to dial back treatment to reduce the severity of the Herx. Most of these individuals will be able to find a balance between a debilitating symptom exacerbation and the overly passive approach that leaves some of the more timid folks at sub-therapeutic doses even after months of treatment. Obviously we want to avoid the ER as much as possible, if only because they don’t usually know what to do to help Herxing patients and can run up quite a bill. Don’t hesitate to take a break if you have to. A glutathione push (see below) is more likely to be helpful than, say, ketorolac (an ER favorite). Hydration is often helpful but a Meyer’s cocktail is even better. We offer all of these services (during regular business hours); we can bill insurance for many of them and we can usually provide them on short notice.
Opinion is divided even within the Lyme community about just how much Herxing is too much. We believe that some Herxing is almost inevitable but when excessive or prolonged it can be detrimental. A severe Herx or one lasting more than a week or two can and should be mitigated by decreasing the intensity of treatment or temporarily discontinuing it altogether. Our experience is that only a few patients are so excessively ‘Gung Ho’ that they keep pushing too hard and need to be pulled back. Sometimes it’s necessary to stop all of your treatments until you feel better. Then restart one-at-a-time, adding a new treatment every few days, until you find the one that is triggering the Herx or the adverse reaction. If the Herx wasn’t terrible, the offending agent can be reattempted once the others have been added back in. It’s also acceptable to wait for the next appointment since ART testing can shed some light on the murky distinctions between medication allergy/sensitivity vs. Herx. Prescriptions are inherently more likely to cause both, so it’s best to reintroduce these last. Samento is the exception – it seems to be the biggest Herx trigger of all. Conveniently, it’s a liquid and can therefore be started at just a single drop and easily micro-adjusted in single drop increments. Sometimes endgame treatments (especially tinidazole) aimed at the ‘Cyst form’ of borrelia can trigger a significant Herx even after months of treatment. Babesia treatments can definitely cause a Herx even though babesia isn’t a spirochete.
The Symptom Questionnaire
Dr Joseph Burrascano is a Lyme pioneer who retired from clinical practice a few years ago after treating more than 10,000 Lyme patients. He developed a questionnaire based on symptoms he frequently heard. It’s a 5-point scale with a ‘5’ indicating that the symptom is very severe. ‘Never had’ and ‘Resolved’ both count for zero points. We put this questionnaire into a web-based application that totals the score for us. It helps us to gauge the response to treatment. In most cases, the score goes up before it goes down. It’s important to score your symptoms on the basis of your recent symptoms. ‘Recent’ to us means over about the last week on average. Done this way, a particularly good or bad day won’t obscure the trend.
The questionnaire also helps us to efficiently document the need for treatment and the effects of treatment. This can be helpful (but is by no means a failsafe) in the event that a health insurance company doesn’t want to pay for something. One day (if we can find someone with the requisite computer and statistical analysis skills) we hope to be able to use the results as raw data in a study that proves the efficacy of our approach to treatment.
A Note About Forms and Disability
We know that Lyme patients have legitimate and often severe symptoms that can be disabling. But we excel at getting these patients well again, not helping them get approved for disability. The burden of proof required for approval is high and deserving applicants fail to clear it. Disability insurers are in the business of making money and they’re inclined to deny any claims they can. That makes them interested not in our opinions but in the available objective evidence. Those who have been diagnosed with other disease states, even fibromyalgia or chronic fatigue syndrome (which many consider to be diagnoses of exclusion) may be better off pursuing approval under the auspices of these labels (with the help of the doctors who used them) than under the Lyme umbrella. We strongly recommend specialized legal representation as those who go without counsel can make mistakes in their applications that will haunt them later even if they end up hiring a lawyer. If you need special accommodations at work, please don’t simply ask us for ‘a letter.’ Most employers have special forms and even those who don’t have an annoying tendency to find letters inadequate for their needs. If you know what the letter needs to say, you can write it for us and Amie will edit it as needed. But forms can seldom be completed in less than 20min and that’s with the help of the patient. Those needing a letter must therefore make an appointment or a phone consult with Sheri or Mike.
The Team-Based Approach to Lyme
In order to maximize the number of patients that can be helped, Sheri, Mike and Dr Naylor need to share the workload. Initial appointments are more time-consuming and there’s often a need to answer a lot of basic questions. We therefore try to leave them to Sheri and Mike so that Dr Naylor can focus on the most challenging patients. Most patients will be starting to improve within the first four months. We hope that most of these ‘early responders’ will stay with Sheri and Mike for at least as long as they continue to improve. They will also identify those most likely to be challenging and can usually get them in to see Dr Naylor within two months of their initial visit. Dr Naylor trained Sheri and Mike, so they have similar approaches to treatment. We want to give our patients what they want as well as what they need. Please help us to balance this perspective with our desire to also provide good care in a timely manner to as many Lyme victims as we can.
General Information About Antibiotic Therapy
Concerns about the use of antibiotics are on the rise. Some of these concerns are more legitimate than others. It’s important to understand the potential downside to any intervention, hence the discussion below. But it’s also important to understand the consequences of not using any particular tool. Treatment options for Lyme abound, so it’s understandable that some patients want to avoid antibiotics entirely. This is appropriate for some patients but not necessarily the ones who take that stance. They’re not the ‘be-all end-all’ but they’re a very valuable tool and the associated risks can be managed. We respect the autonomy of our patients and also hope that they will keep an open mind to all the available options. Supplements and/or botanical antimicrobials are easy to underestimate but overall they tend to be slightly less powerful and somewhat less likely to trigger adverse reactions. For the vast majority of patients, a balanced combination of both is clearly superior to one or the other.
Drug companies are highly regulated. Overall, that’s a good thing. But sometimes too much disclosure can make it difficult to see the forest for the trees. The list of potential side effects of most drugs is very long because it’s required to contain all adverse reactions that were reported. One birth control pill lists ‘broken leg’ as a side effect because one was reported in a treatment group during a clinical trial. In most cases, these effects are mild, rare, and quickly disappear when the drug is discontinued. It’s not feasible to exhaustively examine the whole list with the provider at the time of an office visit. Even those side effects that are relatively common and significant can’t always be discussed in the time allotted. Since discussing a side effect has been shown to dramatically increase the probability that a patient will experience it, one could reasonably argue that it may be better to not discuss it. Having said that, there are a few key points below that deserve consideration.
Taking antibacterial drugs has been shown to increase the probability of getting diarrhea and sometimes this diarrhea is the result of resistant bacteria called clostridium difficile, or c diff for short. Antibiotics thin the heard of healthy bacteria that would normally crowd-out the c diff. The concurrent use of medications that block stomach acid production increases this risk, probably because c diff spores that are ingested are more likely to survive in reduced stomach acidity. Most patients are unaware that they already have c diff when they start an antibiotic because up until then, the healthy bacteria were controlling it. Exposure to this contagious bacteria is more likely in a healthcare setting, so it’s best to wash your hands with soap or use hand sanitizer coming in and going out of any clinic, hospital or nursing home. Different antibiotics can usually eradicate c diff. In rare cases when these fail, some have responded to novel fecal transplant procedures. This sounds drastic, but c diff can be serious, especially for elderly and/or debilitated patients. We estimate the probability of c diff-related problems at less than 3%. We have found the combination of antibiotic discontinuation, high-dose probiotics and oral vancomycin to be effective in the vast majority of these cases. Most of those who have had this infection report distinctively foul-smelling peanut-butter-like unformed stools and malaise. These symptoms should therefore provoke a prompt call to our office.
A less dangerous but more common consequence of antibiotic use is candida overgrowth. For many with tick-borne disease, yeast is a problem even before antibiotics are introduced. The use of antifungals is therefore best regarded as a necessary treatment of an independent problem rather than as management of an unintended consequence of the antibiotics. Those who claim (typically on internet forums) that antibiotics exacerbated or even triggered gastrointestinal symptoms were usually, based on our experience, untreated or undertreated for c diff, candida overgrowth or intestinal protozoa. These are independent problems that are usually pre-existing and easier to treat than they are to diagnose. If these problems are adequately addressed, which in our clinic usually happens on the first few months, the body is quick to re-cultivate a healthy intestinal bacterial microbiome, even after months of oral antibiotics.
Allergic reactions to medications are always possible and some medications are more allergenic than others. Herx rashes and allergic rashes can be difficult to differentiate from each other. Both are unpleasant but ultimately self-limited. Benadryl usually helps but is sedating. Second-generation antihistamines like loratadine (Zyrtec) are less sedating but also less effective. Anaphylactic reactions are very rare in our practice but potentially very dangerous. Swelling of the tongue and/or throat can obstruct the airway. If you have had an anaphylactic reaction in the past you will remember it; and you should have an EpiPen on hand, at least when you’re trying something new. If you require a prescription for a new EpiPen we are always happy to provide one. If you think you may be having an anaphylactic reaction, don’t hesitate to use your Epipen; if you don’t have one, don’t hesitate to call 911.
Weight loss and weight gain are both fairly common in the throes of aggressive Lyme treatment. More often than not, the weight changes go in the wrong direction. This can happen even in the face of better dietary choices, which are described below. We’re not sure why this happens but for those who gain weight we could imagine an analogy of a country at war that’s disinclined to let energy reserves run low. It might need them later if the battle takes a turn for the worse. Weight loss on the other hand, is a hallmark of many disease states.
Mild hair loss is a complaint we hear from time to time. It usually comes from women but it’s possible they’re just more likely to notice it than men. It’s reasonable to check a thyroid panel but this has yet to yield fruit. We suspect the phenomenon is biotoxin-driven. It tends to self-stabilize within a few weeks. Like a milder version of the hair loss this is typical in chemotherapy, the hair tends to grow back later.
Specific antibiotics and problems that they sometimes cause
All antibiotics that kill bacteria probably create some predisposition to c diff or candida overgrowth. This isn’t true for prescription medicines used to kill viruses (which are rarely used in our office), those used to kill yeast or fungus (which are often used to prevent and/or treat candida overgrowth) and those used to kill parasites (including but not limited to babesia) since they don’t typically have any effect on healthy bacteria. The paragraphs that follow are meant to summarize the most common and/or significant problems that we encounter. They do not represent a complete list of medicines we commonly use. Medicines not listed have not proven sufficiently problematic to warrant special consideration at this time.
Doxycycline (‘Doxy’) is a powerful, broad-spectrum and (until recently) inexpensive anti-bacterial agent that goes by many different brand names. It is ‘sun-sensitizing’ which means that those who take it can get a sunburn-like rash in response to amounts of sun exposure they would normally be able to tolerate. Often this happens on the backs of the hands. Fair-skinned individuals are more susceptible. Sunscreen helps. It can also be upsetting to the stomach and should therefore be taken with food, even if your pharmacist says to take it on an empty stomach. It’s a great place to start when treating Borrelia and associated infections, but in our opinion it usually exhausts its usefulness in a month or two. Sometimes it returns late in treatment to help finish off the bartonella.
Azithromycin (Zithromax) and clarithromycin (Biaxin) are also broad-spectrum generic antibacterial drugs. They are generally well tolerated, but in rare cases need to be discontinued because they cause or exacerbate ringing in the ears, also called tinnitus.
Tinidazole (Tindamax) and its more caustic cousin metronidazole (Flagyl) are keys to the anti-borrelia endgame. Alcohol should be avoided since they act like a hangover multiplier. Some patients can have a drink or two and get away with it. Rarely, alcohol-sensitive patients find that they need to put alcohol-based tinctures in hot tea before taking them or else they get headaches. Like a lot of substances, metronidazole has been shown to trigger cancer in laboratory animals when given in doses and durations exceeding those typically prescribed. In rare cases, they can also trigger nerve dysfunction, called peripheral neuropathy, which is characterized by numbness and/or tingling, usually of the hands and/or feet. At the lower doses we now use, this seems to happen less than 1% of the time. In each case we have seen, the symptoms resolved with a few days or weeks after discontinuation of the drug. Some providers who have seen this happen recommend supplemental magnesium, vitamin B6 and B12 to facilitate recovery. Because these medications can sometimes also irritate the liver, we usually check for elevations in liver enzyme levels after 10-14d of treatment using a simple blood test. We typically prescribe these medications at about half the usual dose, which seems to significantly reduce the already fairly low probability of these unintended consequences. We prefer tinidazole because all the potential side effects of the class seem to be less frequent than for metronidazole.
Mefloquine (Lariam) is an important part of the babesia endgame for about 40% of patients. Its use has reduced the incidence of seemingly incurable babesia infection in our clinic by at least that much. It causes adverse reactions in the majority of babesia patients who take it. Subsequent rounds of the medicine tend to trigger less severe reactions, revealing that the majority of them are Herxheimer reactions rather than side effects. Nausea and dizziness are the most common and we have seen these symptoms take the form of both true intolerance and Herxheimer reactions. About one percent in our estimation will hallucinate. In both such cases we have seen, the effect lasted only a few hours. About equally common is an exacerbation of mood problems that seems to last about 2 weeks. Recent reports of neuropsychiatric adverse events led to a blackbox warning that it not be prescribed for malaria prophylaxis in patients with major psychiatric disorders. Reactions persisting after discontinuation of the medication have been reported in this population; fortunately we haven’t seen them in ours. Mefloquine should never be taken with Biaxin/clarithromycin and even the related Zithromax/azithromycin should be avoided for two weeks or more after mefloquine is discontinued.
Ceftriaxone (Rocephin) is an antibiotic that is not well absorbed orally and is therefore only available as an injectable. We are able to avoid the use of injectable antibiotics in more than 90% of our patients and about half of the remainder can get to goal using Bicillin, a long-acting form of penicillin that is administered intramuscularly. This avoids the pitfalls of ceftriaxone, which include gallbladder problems and the complications associated with the use of peripherally inserted central catheters (PICC lines). These include but are not limited to skin infections and blood clots. We have a separate consent form for patients requiring this form of treatment.
Do I need to take probiotics?
Probiotics have been shown to be helpful for both the treatment and prevention of antibiotic-associated diarrhea. They say that an ounce of prevention beats a pound of cure, so it’s hard to make a case against them. Of course if a problem is fairly uncommon and easy to treat in the event that it does arise, money spent trying to prevent it might be better spent on something else. To illustrate, assume that probiotics prevent 50% of all cases of antibiotic-associated diarrhea (the actual number is closer to 40%). Next we’ll assume that 10% of those given an antibiotic get diarrhea from it. Using those numbers, it takes 20 courses of probiotics to prevent one case of diarrhea. This is known as the ‘number need to treat’ or NNT. The NNT with statin drugs to prevent a heart attack is much higher. Since that one case of diarrhea can usually be treated successfully with probiotics and discontinuation of the antibiotic, it doesn’t seem cost-effective to automatically recommend probiotics to every patient. With statins, the heart attack that was prevented might be fatal – so it makes sense to use them even though the NNT is high. We therefore encourage the use of probiotics and stock versions that we believe to be of superior value. But since they don’t tend to come up on ART testing except in those with active diarrhea we don’t generally put them in the protocol. If you choose to take probiotics do not take them within one hour of taking antibiotics. For most patients, this means taking them at lunch.
What dietary changes should I make?
It’s increasingly clear that refined carbohydrates, especially sugar and flour, are major causes and/or contributors to a host of lifestyle-related diseases like obesity, diabetes and heart disease. Minimizing the consumption of these empty calories is in the best interest of all of us whether we’re sick or not. Wheat sensitivity affects the majority of our patient population to some degree. This problem is best viewed as a continuum from those who are tolerant of wheat gluten (but still better off without it) all the way to those with Celiac Sprue. Only those on the far end of the spectrum test positive for Celiac. Negative results on these tests do not rule out one’s potential position on less severe portions of the spectrum. Individuals on said spectrum find that strict avoidance works much better than just a reduction in total wheat/gluten consumption. Since the inflammatory response to gluten can last several days, those who eat it only twice per week may not be much better off than they were when they were eating it daily. In many cases the only way to determine if you are sensitive to wheat is an elimination diet: start by strictly avoiding the food for a month. If you feel better, you have your answer. If you still aren’t sure, eat some pasta and pay attention to what happens next. Symptoms of sensitivity often come in the form of abdominal cramping, pain indigestion, fatigue or cognitive impairment.
If you can avoid wheat and reduce sugar you will be avoiding most of the refined, nutrient-poor foods that none of us should really be eating anyway. This seems to be enough for most people. Others advocate for more severe dietary restrictions: no sugar (including fruit), no starch (including potatoes and rice), no alcohol (or anything fermented), no caffeine, no dairy, etc. For those eating a typical American diet, this can be very challenging at first. But for those with stubborn candida overgrowth, following a ‘candida diet’ is often a necessary part of a successful treatment protocol. This also happens to be our advice for those wanting to lose weight.
You can start with: ‘if it’s white, it’s not right.’ This is meant to discourage the consumption of refined carbohydrates, especially sugar, flour, potatoes, corn and rice, in that order. Alternatively: ‘eat like a caveman.’ Advocates of so-called ‘paleo’ diets accurately point out that most of us haven’t had time to adapt to the dietary changes that came about with the advent of agriculture. Asians and Northern Europeans have been eating rice and potatoes, respectively, for long enough to have partially adapted to the effects of these foods on the body. Africans and indigenous people were hunter-gatherers quite recently (from an evolutionary perspective) so they tend to be relatively more vulnerable to diabetes and obesity when they eat refined foods.
You don’t need to be draconian in your avoidance of refined food right off the bat unless that’s your personality. Reducing portions, avoiding refined food in the grocery store and making better choices in restaurants is a good place to start. Be aware of the sugar content in beverages, even sports drinks, coffee and juice. Don’t call yourself a failure and give up because you ate the ice cream – it takes too much discipline to resist the junk food that’s in the pantry or refrigerator all day long; it’s far better to be disciplined for an hour in the grocery store once per week.
We believe there is some validity to the notion that blood typing may allow for personalized dietary recommendations. There’s a lot of interest in dietary approaches to heart disease because it’s the leading killer in the developed world. Yet a consensus opinion remains elusive; one camp believes that animal 13 protein and fat should be avoided and another sees sugar and other refined foods as the culprit. Both camps point to published research to support their disparate positions – but they both at least agree that we should all eat more vegetables). In his book ‘Eat Right for Your Blood Type’, Dr Peter D’Adamo makes the case that cavemen carried only type ‘O’ blood. Type A blood evolved in response to dietary changes that came with the advent of agriculture. He says that type O’s do better on a Paleo diet (high in animal products and low in grains) while Type A’s do better on a vegetarian diet. Type B’s and AB’s are more versatile. D’Adamo’s book is well referenced but the critics say his science is thin. We have no data to sway the debate but anecdotally we have found that O’s who try to go vegetarian feel lousy and A’s who try to go Paleo have high cholesterol.
“So what can I eat?” you say. Vegetables. With reckless abandon. Try not to cook them to mush. There should be at least a little protein with every meal, especially breakfast. Consider a scoop of a meal replacement powder (such a PaleoMeal) with a scoop of protein power (such as hydrolyzed whey or pea protein) with fruit, plain Greek yogurt and frozen kale for breakfast or as a meal replacement. Quinoa is a terrific grain.
It’s difficult to overestimate the therapeutic power of dietary interventions. For the most part, we know this because of what we hear from patients when we ask them on intake what changes have done the most to help then get better. Often the most dramatic stories come from those who have cut out both dairy and gluten. Since removing just one or the other from one’s diet can be daunting at first and since dairy is a nutrient dense food, we think it’s best to start with ‘no-gluten, low sugar.’ But for those who have mastered this and are ready for more, a trial of dairy avoidance is well worth a try. Dietary changes are low cost, low risk interventions.
What about exercise?
Exercise has powerful beneficial effects on health. Having said that, there is such a thing as too much of a good thing. Listen to your body: if it takes you two days to recover from a workout, you did too much. Mile for mile, walking provides most of the benefits of more demanding activities with less risk of injury. Lifting light weights with high repetitions is excellent exercise. But when you’re sick, it’s best to not further deplete the adrenals by ‘digging deep’ to push out that last rep.
What are the risks of treatment?
It should go without saying that nearly any intervention carries some risk. Even the safest medicines have a laundry list of possible (though typically uncommon) side effects. Most of our patients are more sensitive to medications than is the average individual, making them more likely to have a bad reaction. It’s quite clear to us that the use of ART reduces the frequency of adverse reactions, but it doesn’t eliminate them. During the course of treatment, most patients will attempt more than two-dozen treatments, so it’s statistically likely that one or two of them won’t go well.
There is another phenomenon that’s good to be aware of: sometimes people become intolerant to a medication when it has exhausted its usefulness. It seems that when you give the body something that it wants and needs, it knows just what to do with it; and when the infection that it was killing has been eradicated, the medicine becomes a hot potato: the blood doesn’t want to absorb something useless that will require limited resources to metabolize and excrete – and the gut doesn’t want to retain something that will be hard on the healthy bacteria further down the digestive tract. This only happens in about 20% of patients but when it does, it can be revealing of useful information: typically the departure of an unwelcome organism. It you think you may have become intolerant to something (usually manifested by gut symptoms such as nausea, indigestion or diarrhea) discontinue it. If you feel better, you probably didn’t need it anymore. Herxing almost never comes in the form of gastrointestinal symptoms except during the treatment of relatively severe intestinal parasitosis.
It’s always best to get all your prescriptions from the same pharmacy since they will run an interaction check against all the other medications you are currently using. We make a deliberate effort to avoid drug interactions but our patient population is typically seeing multiple providers and suffering to some degree from cognitive symptoms. This makes it difficult for us to maintain a current and complete medication list for the purpose of continually checking for any drug-drug interactions. When asked at check-in if there have been any changes to your prescription medication regimen, please take the question seriously.
Where does all the controversy come from?
Those new to the Lyme debate often assume that blame for the failures of timely diagnosis or effective treatment falls on some government or commercial entity such as the CDC, FDA, Big Pharma or the health insurance industry. We do have a beef with the CDC but the single biggest reason why patients suffering from tick-borne diseases fail to get the help they need is the Lyme disease guidelines committee assembled under the auspices of the Infectious Diseases Society of America (IDSA). If there’s a villain in this story (and there is) his name is Gary Wormser. Dr Wormser’s powerful position in the committee has allowed him to surround himself with like-minded naysayers, thereby creating an illusion of consensus opinion. If Wormser and his cronies were to spend a few months shadowing a Lyme-literate physician they would surely see the majority of patients gradually improving. But life in the Ivory Tower of academic medicine usually has more to do with publishing papers. In the case of Lyme disease, much has been published but no study has attempted to treat chronic patients in a manner that would address their opportunistic secondary infections or even their tick-borne co-infections. This isn’t surprising because (as previously discussed) both groups of infections are difficult to test for, especially in the immunosuppressed Lyme patient. But even in the existing literature, different papers reach contradictory conclusions. Instead of acknowledging this ambiguity, the guidelines committee tends to favor their own publications and/or preconceived notions. I think we can agree that’s not how guidelines should be written.
As if this weren’t enough, some within this community have leveraged their status as publishers of clinical research to place what amounts to opinion pieces in prominent medical journals. These articles can be even more biased than the guidelines themselves. They can be also be very influential, as naive but good intentioned medical providers who stumble upon them come away with strong and negative opinions of those who suffer with Lyme (or are willing to treat it).
The main problem with the IDSA guidelines is that they casually dismiss the reality of treatment resistant and/or chronic infection. Lyme is difficult to find using culture or PCR testing even under ideal circumstances. Positive results on this kind of testing become much harder to come by after just a few doses of antibiotics. This isn’t even that unique – every resident learns to get a blood culture before starting antibiotics in those presenting to the hospital with suspected cellulitis or sepsis. Yet the committee members point to negative culture and PCR results in those have been treated with antibiotics and assume that they must be cured. They suggest that those who still have symptoms must be suffering from ‘post-Lyme syndrome’ but fail to provide any evidence to support this notion. This is especially troubling since the publication in 2012 of the study by Embers et al.
A new army of Lyme conspiracy theorists was born in 2012 when the study by Embers et al was finally published. It proved that borrelia can and does survive even extended courses of antibiotics, at least in monkeys, a close evolutionary relative. It had been completed a decade prior but mysteriously withheld from publication. How could such a fundamentally important and expensive study have been withheld for so long, if not because it flew in the face of conclusions stubbornly maintained by the IDSA? Ironically, the Embers study was designed to parallel the Klempner studies that have so often been quoted in defense of the IDSA’s dismissive approach to chronic infection and the consequent denial by insurance companies of longer courses of treatment. The Klempner studies showed that patients with confirmed Lyme and persistent symptoms despite short-term treatment failed to respond to retreatment with slightly longer courses of poorly chosen antibiotics. This led to the erroneous conclusion that ‘long-term antibiotics don’t work for Lyme disease,’ a conclusion promoted with unprecedented vigor by the IDSA, which even hired a publicity firm. It seems that they felt vindicated by the Klempner findings and there’s no doubt that the publicity storm won over a lot of skeptical/undecided and uninformed physicians.
There are several significant design flaws to the Klempner studies but perhaps the most important is that no consideration was given to the co-infections (like babesia and bartonella) or to the opportunistic/secondary infections (like yeast overgrowth, viruses and intestinal protozoa) that so often plague these patients. Any Lyme-literate physician worth his or her salt knows that Lyme is a multifaceted disease and needs to be treated as such. A patient who presents with a ‘target-like’ rash after a recent tick bite will probably recover completely if given 3-4 weeks of doxycycline, since this antibiotic also targets most co-infections. Early treatment prevents the establishment of the immunosuppression that sets in and opens the door for the secondary infections. But the vast majority of our patients weren’t treated early. Klempner merely proved that 30 days of IV Rocephin followed by 60 days of oral doxycycline isn’t the right approach to the chronically ill victim an infected tick. These people need individualized treatment aimed at all their infections if they want to have a statistically significant chance at a meaningful long-term recovery. Even the right antibiotics aren’t going to work if they aren’t given at the right time. This kind of treatment is reasonable to hope for in the office of a good Lyme-literate physician but it simply doesn’t lend itself to the double-blind placebo-controlled study; it’s nearly impossible to individualize a comprehensive treatment when you’re supposed to be giving every subject the same treatment and half of them are getting placebos anyway. For this reason, we’re not holding our breath for a research study to validate what we already know to be working for the vast majority of our patients. Wormser says he doesn’t “care” that the Embers study disproved the cornerstone of his false paradigm because it still doesn’t prove that long-term antibiotics work better than placebo in human subjects. On some level he must know that the only study that would convince him is impossible to perform. Yet he would have tens of thousands suffer unnecessarily for a study that may never come.
Is Lyme disease curable?
This is a tough question that gets asked a lot. If you define ‘cure’ as a return to an average state of health, the answer is a resounding ‘yes.’ Whether or not borrelia, babesia and bartonella can be completely eradicated from the body is harder to say. We believe that eradication can be achieved in most cases. Compared to most other experts in the Lyme world, we tend to be relatively optimistic on this point. We believe that our approach to treatment (the combination of natural and prescription agents under the guidance of ART testing) allows us to be more consistently successful even if success is defined as definitive treatment. We have had patients who got better and relapsed and those who never got better in the first place, but most of those who relapsed required just a few months of re-treatment to achieve lasting remission (or was it a cure?) and those who never respond to treatment are rare.
A fair number of those treated successfully for Lyme come back to the office months or years later for our opinion on a new problem, to accompany a friend or relative in search of a second opinion on their own health problem or just to tell us that they’re still doing well. Are all of these people still harboring tick-borne infections? Are they just ticking time bombs waiting to relapse in the face of some stressful event? Some of them probably are. But we think that in most of these cases the infections have indeed been treated definitively. Like with so many other questions pertaining to the Lyme phenomena the question of cure is hard to answer in absolute, ‘black or white’ terms.
Can you get Lyme without getting a tick bite?
Vertical transmission (from an infected mom to her unborn fetus) is definitely a reality in our experience. Clear-cut cases of sexual transmission between partners are hard to come by. One recent published case revealed the same strain of borrelia in the semen of a man and in the vaginal secretions of his partner. This caused a stir but it’s possible that they just got bit by two different ticks from the same hatch. It seems that here, as elsewhere in the Lyme debate, there is an attempt to apply black or white conclusions on a reality that has fifty shades of grey. Our stance is that borrelia is not optimized for sexual transmission but since it is inherently sophisticated and resourceful, it manages to do so from time to time.
Skin is an excellent barrier to infection, at least until it gets breached by, say, the head of a tick. Mucous membranes (like the vagina) are more vulnerable but still have some immunity. Consider a scenario in which a woman has a smoldering, low-grade vaginal infection: perhaps her pap smear needed repeating, there was some candida overgrowth, or a chlamydia infection that went undetected or managed to survive a short course of antibiotics. Given its similarity to syphilis, the notion that Lyme may be able to get a foothold in this scenario doesn’t seem like a stretch. On the other side of that coin is the woman whose healthy vaginal immunity met the challenge and defeated it. She should have some anti-Lyme antibodies to further protect her in the event of future exposure. For that reason we believe that getting Lyme on a one-night stand is quite possible but long-term monogamous couples who didn’t transmit it early in their relationship probably never will.
Couples who have been together for a long time really needn’t worry as long as one of them is in treatment. Theoretically, someone who has been cured should have some immunity. In practice, the issue tends to come to a head when one partner is finally cured and ready to discontinue treatment and the other partner is minimally symptomatic and resistant to the idea of perhaps being a carrier. We’d love to not be dragged in to this kind of sticky wicket. But in the event of a relapse, and especially a second relapse, spouses should at least consider an IgeneX Western Blot.
As for other vectors, we’ve heard from a reliable patient who swears she was healthy until a deer fly bite triggered a textbook Lyme rash. Several others believe it was fleas or bedbugs that did them in. If tics are arthropods, is it a stretch to think that spider bites might be dangerous? Lyme rashes get misdiagnosed as spider bites all the time. Babesia poses a known threat to the blood bank system and to anyone who receives a transfusion. It would be nice if this led to more reliable and cost-effective babesia tests. Thus far, however, none have been forthcoming. If malaria can be transmitted by mosquitos, why not babesia? It doesn’t seem like much of a stretch, but there’s never been a confirmed case. We have also seen patients who were healthy until they got West Nile virus (WNV) from a mosquito bite – but didn’t get better until they were treated for both WNV and Lyme. It’s possible that these patients were minimally-symptomatic Lyme carriers until the WNV, like the straw that broke the camel’s back, tipped the scales. In fact, we often see patients who were probably infected with Lyme years and even decades before they became sick. The trigger is often a stressful event such as a surgery, pregnancy (including the delivery and inevitable period of postpartum sleep deprivation), car accident, divorce or death in the family. Stress is immunosuppressive, mostly because it increases the body’s production of steroids. Prescription steroids like prednisone are given orally or injected into joints, often for symptoms that are common in Lyme patients. We have seen these kinds of treatments activate latent disease, derail effective treatment and even trigger a relapse. They should therefore be avoided whenever possible. Hydrocortisone, a bioidentical steroid hormone, does not seem to be associated with these problems when used appropriately (i.e. in low doses) for those suffering from adrenal fatigue.
A few words about financials
We know it’s gauche to talk about money so we try to avoid doing so. Please allow us to make a quick point on the subject so that it can be put aside. As Americans, we pay a lot for healthcare. We might even feel justified in expecting white glove service to match our steep premiums. But most of the extra cost (relative to that in other developed nations) ends up going to hospitals, which typically collect double or triple the amount their international counterparts do for the same services. Then there’s the pharmaceutical lobby that has shaped the legal landscape in such a way that we pay much more than our share of the world’s drug development and marketing costs.
Studies have proven that a strong primary care system saves money, but American internists and family physicians are burning out seeing 90 patients in 50-hour workweeks while bringing home less than their British or Canadian counterparts. Collective bargaining by physicians is prohibited, which makes it impossible for all but the largest physician groups to negotiate with insurance companies. Like many small practices, we can’t even get annual reimbursement increases that keep pace with inflation. One of the largest insurance companies doesn’t pay enough for a typical 40-minute follow-up to cover the overhead. These factors are driving a trend towards hospital ownership of outpatient practices. A few years ago there was a Lyme-literate physician in Lafayette. He sold his practice to a hospital conglomerate and a few years later the administrators told him he could no longer treat Lyme patients. They told him that long-term therapy was unproven, even though this could also be said for about 30% of all accepted primary care interventions.
Most primary care providers can overcome these economic realities only be seeing double or even triple the number of patients we see in any given span of time. This is possible partly because many of those patients are coming for relatively simple problems like sore throats and blood pressure checks. The simple cases subsidize that are more complex. Lyme-literate providers who accept insurance are nearly non-existent because it’s impossible to give good care to twenty or thirty Lyme patients in eight hours. At the Sound Clinic, it’s only after revenue comes in from ART services or supplement sales that it becomes possible to compensate the providers commensurate with their same-specialty peers. For this reason we hope that patients choose to take us up on our offer to price-match any advertised supplements. Just remember to consider the cost of shipping and handling, as we do not charge extra for either.
Odds and Ends
We usually recommend that our patients go to LabCorp for routine labs because they built an interface with our electronic medical records system, which greatly improves the probability that we get the results in a timely manner. Obviously, if your insurance insists that you go to Quest then you should go there. We don’t draw blood for Quest labs. If you don’t have insurance then you are advised to pay us for your labs at the time of your office visit because we have special prices with the labs that are substantially lower that what you will be charged if you choose to pay the lab directly. We pass on these low prices to you without marking them up but we do charge $15 for venipuncture and specimen handling.
Why Can’t I Get Better?
This segment title is borrowed from Dr Richard Horowitz’s recent book. Horowitz appreciates that ‘chronic Lyme’ patients have a multifaceted disease. As an analogy, he describes a hypothetical patient who goes to the doctor with sixteen nails in his foot. Each nail represents one of the sixteen factors he deems important in the Lyme population. The doctor removes one of that nails but the patient is still in pain. It may be that the patient has several nails that all need to be removed before he will recover. As discussed above, many patients don’t get better because they aren’t treated for co-infections, opportunistic infections or biotoxins. A more comprehensive approach that addresses all of these factors works for the majority of patients. Those who still don’t respond are usually being road blocked by one or more of the following four confounding factors: heavy metal toxicity, chronic mold exposure, methylation defects and unresolved psycho-emotional trauma.
Heavy metal toxicity can be from lead but the culprit is usually mercury. It’s possible to get too much mercury from eating too much seafood (especially the large predator fish) but the vast majority of cases we have seen came from mercury amalgam fillings. ‘Silver’ filling are still placed by many if not most American dentists even though they still contain close to 50% mercury by weight. The debate over the safety of mercury as dental filling material still rages, mostly because the American Dental Association (ADA) still tells its members that mercury is safe. Rumor has it the ADA still profits from a patent on the mercury containing amalgam alloy most dentists use. Whether or not this is true, many people with a mouthful of amalgams are healthy. But what’s safe for some can still be dangerous for others. Consider searching YouTube for the following two short videos: “Smoking Teeth = Poison Gas” and “How Mercury Destroys the Brain – University of Calgary.” It’s possible that the toxin burden carried by most Lyme patients makes many of them less able to excrete the mercury that their fillings are releasing every day. Imagine your detox pathways as I-25; it’s harder to get to your destination during rush hour. In this analogy, the Lyme patient’s detox pathways look like rush hour every day. Many with amalgams and Lyme can recover without having the mercury removed. But for some, especially those with recurrent candida overgrowth, there is no alternative to amalgam extraction. Special precautions are required to minimize the mercury exposure that can result from this process. For that reason we recommend that it be done only by a dentist on the IAOMT.org referral list. After the mercury has been replaced with biocompatible filling materials, it may be necessary to follow a chelation protocol. Chelators are medicines, available as supplements, which bind to heavy metals stored in the body so as to facilitate their excretion. In our experience, chelators come into play only on the downslope of treatment, when the detox highway traffic is back up to speed.
The detrimental effects of chronic mold exposure remains controversial – you guessed it – because it’s difficult to test for. The Environmental Relative Mold Index (ERMI) test offers some insight into how many mold spores are present in a given house – but it doesn’t measure mold toxins. Dr Ritchie Shoemaker (author of Mold Warriors and Surviving Mold) thinks that measuring VIP and MSH can offer some insight into which patients are mold toxic – but even he admits that they don’t represent the last word. RealTime lab is offering a urine test for 3 different mold toxins. The test doesn’t determine if said toxins are coming from mold growing in a patient’s house, office, intestines or sinuses. The combination of ERMI and RealTime tests therefore at least looks promising. We have also been impressed by the work of Jeff Bookout of Biobalancenow.com. Jeff will come to your house with special equipment to look for possible sources of mold spores and/or toxins.
Methylation is a chemical reaction driven by enzymes that facilitate the transfer of a methyl group (a carbon atom bound to three hydrogen atoms) to a target molecule. It’s an important part of phase II detoxification in the liver, where it serves to make toxins more water-soluble so that they can be excreted through the kidneys. Variations in the genes that code for the enzymes make some people ‘poor methylators.’ It’s possible to test for methylation defects. Comprehensive genetic testing for methylation defects and other single nucleotide polymorphisms (SNPs) is available at 23andme.com. The cost is just $99 and a doctor’s order isn’t necessary. An interpretation of the results is available for free to those who enter them manually at geneticgenie.com. More than half of some ethnic groups have at least one, so they’re common. The problems they cause can be partially overcome with special supplements. It’s been our (admittedly limited) experience that our toughest patients often have two or more methylation defects.
Unresolved psycho-emotional trauma is often overlooked as a cause or contributor/perpetuator of chronic illness. This is probably because there is a poor appreciation both in medicine and in the general public for the profound effect that the mind has on the body. Some of the most dramatic turnarounds we have seen came immediately after the right emotional intervention. It seems that the psyche, when faced with something traumatic, sweeps it under the rug by stuffing it down into an organ system. It may be more accurate to say that the problem is swept into a different part of the brain that now disrupts the healthy neurological micromanagement of said organ system. Either way, infections can exploit the resultant vulnerability such that recovery now requires simultaneous treatment of the trauma and the infection. Talk therapy is often adequate as a means by which to effect change but we believe that more efficient and powerful approaches now exist. Eye movements, colored glasses, tapping of acupuncture points and the repetition of affirmation statements are just a few of the amazing tools being used to uproot old traumas and uncouple them from the negative effects they can have on our physiology. The best practitioners are using Neuro-Emotional Technique, or NET. We’re particularly impressed with the work of Lana Weinbarg.
What Else Can I Do?
Because we feel so strongly about providing good value we sometimes end up under-utilizing services that we actually offer. We tend to reserve the injectable and/or intravenous options for those who have failed or plateaued but this sometimes has more to do with cost/value than risk. Those with greater means and a desire for a full-court press may choose a step up in intensity in the early stages. The following section describes some procedures that we have found to be safe and often very useful. The nice thing about the treatments below is that most of the benefits, if any, should be seen quickly.
Even the right combinations of prescriptions and supplements can take months to bear fruit. That can be discouraging. But if you find yourself intuitively drawn to something below, do some research on your own or ask us about it. The risks are minimal and costs are reasonable.
Therapies Offered at the Sound Clinic
1. Acupuncture: Acupuncture is a therapy that is used for a variety of ailments, including fatigue, pain, insomnia, sympathetic excess, immune support, smoking cessation, anxiety, and PTSD. If interested in acupuncture as a part of your treatment plan, please request an acupuncture questionnaire from the front desk and schedule an appointment with Dr. Lyndsay. Acupuncture fees averaging around $40 per session (in addition to the office visit / Evaluation & Management fee) are recoverable from most major health insurance companies once deductibles have been met. You might consider contacting your carrier to see if exclusions apply.
2. Osteopathic Manual Therapy / Craniosacral Therapy / Biodynamics: OMT is a form of manual therapy that integrates the mind, body, and spirit but is mostly used in the treatment of musculoskeletal pain. It comes in many different forms, ranging from the abrupt adjustments (typically associated with chiropractic) to the extremely subtle forces applied by so-called craniosacral therapists. Biodynamic osteopathy is an even more subtle application of craniosacral therapy that seems to reduce the sympathetic activity (stress burden) in the body allowing for patients to feel more relaxed and balanced. This can improve immunity. For many people, it improves sleep, calms headaches and reduces pain. Dr. Lyndsay, Dr. Diamond, Dr. Krembs and Dr. Naylor are both trained to restore symmetry and remove restrictions in the musculoskeletal system using these techniques. For more information, refer to the American Osteopathic Association. To schedule an appointment for OMT, please call or ask at the front desk. Insurance is billed and the cost varies by the number of regions treated.
3. Major Autohemotherapy (MAH): This strangely named therapy requires that about 60cc of blood be removed from the body. It is mixed with saline then ozone gas is bubbled into the mixture. Finally, it’s dripped back into the patient. Ozone gas, (‘O3’) is made from oxygen gas (‘O2’) when the addition of energy allows for three oxygen atoms to bind together instead of the usual two. Ozone is unstable so it breaks down quickly back to O2 and the third oxygen molecule bonds to various biological molecules, forming ozonides. Biological tissues exposed to ozonides utilize more oxygen, which means they make more ATP, the energy currency of the cell. Cells can make energy using oxygen and creating carbon dioxide in a process called oxidative phosphorylation. This process is complicated and slow but yields a lot of energy. They can also make it the quick and dirty way, called glycolysis, which yields lactic acid and only 6% as much energy. It seems that inflamed, diseased or dysfunctional tissues have a tendency to favor glycolysis. By causing them to use more oxidative phosphorylation, ozone therapy appears to make more energy available to sick cells. MAH is often combined with UV Blood Irradiation or UVBI. Refer to American Academy of Ozonotherapy (aaot.org) for more information. The cost is $120.
4. UV Blood Irradiation (UVBI): As with MAH, 60cc of blood is removed but then it is run past an ultraviolet light just before it is dripped back into the body. It is thought to be antimicrobial. For more information, ask us for a free booklet. The cost is $120 or just $40 extra if combined with MAH.
5. Prolozone: Prolotherapy has been used for decades, mostly as a treatment for musculoskeletal pain arising from ligamentous laxity. Loose ligaments can result from overuse or injury. They can be pain generators by 20 themselves or they can cause joint cartilage to wear out faster than it can be replaced. Various injectables have been used over the years to trigger proliferation of ligamentous tissue, but the needle trauma itself may be the primary driver. When ozone gas is used as an injectable the procedure is usually called prolozone. Although a head-to-head study has yet to be done we feel that ozone is both safer and more effective than many other injectables commonly used by prolotherapists. Refer to American Academy of Ozonotherapy (aaot.org) for more info. The cost is $100 per injection.
6. Infrared Sauna: Sweating is a great way to detox through the skin. Far-Infrared light penetrates through the skin where it is thought to mobilize toxins stored in fascia, muscle and adipose tissue. With lower temperatures and less humidity, it’s a more pleasant environment than a traditional sauna – ours even incorporates color therapy and has an iPod jack. The cost is $30 per session.
7. Myer’s Cocktail: This IV nutritional drip can be customized but typically includes magnesium, zinc, other trace minerals, B vitamins, vitamin C, and bicarbonate. It is useful for patients that do not absorb nutrients well and it has been used successfully for a wide range of symptoms. We charge only $90.
8. Glutathione Push: Glutathione is thought of as the body’s master antioxidant molecule. Used-up (‘reduced’) glutathione is a marker for cellular toxicity. We find is most useful as a treatment for severe Herx reactions. It is administered intravenously, often used in conjunction with a Myer’s Cocktail, but it can also be given alone. This cost varies according to dose and a $30 charge to start the IV line applies unless one is already in place.
9. Trigger Point Injections: Procaine is used as an injectable in the treatment of areas of point tenderness that radiate pain to adjacent structures. Common areas of treatment are the head, neck, upper back, and low back. This procedure is billable to insurance, typically for $50 to $135 depending on the number of muscles treated.
*We recommend a conversation with your provider prior to all treatments to ensure that it is a good option for you. Please ask the front desk if you have further questions regarding costs and for scheduling.
Lyme Disease/Coinfection Resource List
We believe that the controversy surrounding Lyme disease makes it even more important that patients be well informed. Conflicting opinions can be unsettling but sometimes conflict can drive progress. Nobody has all the answers and there are different roads to recovery. We recommend starting with the *starred references.
A. Videos *1. Under Our Skin: The Hidden Story of Lyme Disease. This documentary and the more optimistic sequel, Emergence, are both highly recommended
2. LymeLight: Angeli VanLaanen – Professional Skier
3. Ticked Off: The Mystery of Lyme Disease – The Nature of Things with David Suzuki
B. Radio 1. Lyme Light Radio with Katrina Makris
C. Books *1. Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, by Dr. Richard Horowitz
2. Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub
3. Insights Into Lyme Disease Treatments, by Connie Strasheim
4. Freedom from Lyme Disease, by Brian Rosner 21
D. Articles *1. Counterpoint: Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease, by Raphael B. Stricker. Go to http://cid.oxfordjournals.org/content/45/2/149.full
*2. Lyme disease: The Next Decade. Raphael B Stricker and Lorraine Johnson. Go to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108755/
3. Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection, by Embers et al. Go to http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0029914
E. Lyme Search Engine http://slyme.tiredoflyme.com: This search engine that has answers to many common Lyme questions
F. Patient Advocacy and Educational Websites These websites provide a lot of information and express many opinions – they are not necessarily the opinions held by providers at the Sound Clinic. 1. lymedisease.org 2. http://www.stopthelymelies.com 3. http://www.betterhealthguy.com
© Copyright 2015 by Shawn Naylor, DO.