Lyme Disease as the New Great Imitator: Neurological and other non-arthritic cases
Syphilis used to be called The Great Imitator, because the secondary and tertiary stages of infection led to and mimicked a host of other diseases. Many cases of bone, skin, heart, brain, mental and other illnesses caused by syphilis were missed or misdiagnosed. The primary lesions of syphilis were easy enough to diagnose, but before the advent of effective antibiotics there was no effective treatment. The primary lesions naturally disappeared after a short time, and the infection progressed to secondary and tertiary stages. These later stages could take decades to manifest, so they seemed unrelated to the original illness. Often, the original infection was forgotten. Even long after antibiotics were used to cure primary syphilis, tertiary cases continued to crop up and be misdiagnosed.
Syphilis has now been treated in its primary stage with antibiotics for so long that there are few, if any, late-stage “imitator” cases. But there is another disease that has become the new Great Imitator: Lyme Disease (Lyme). Lyme, a spirochete infection like syphilis, typically presents as an arthritic-type illness. But it can also cause atypical illness in the brain, spinal cord, pericardium, gastrointestinal tract, endocrine organs and glands, skin, and other tissues and systems. Unlike syphilis, the ability of Lyme to mimic other diseases does not depend on having a long-term infection. These atypical manifestations of Lyme can occur with or without the typical arthritic illness, at the initial onset of infection or at some later time. Lyme can appear in any of these combinations, with their corresponding clinical results of imitating other illnesses and being un/misdiagnosed:
1. Typical arthritis-like illness, by itself: At least half such cases remain un/misdiagnosed due to a high rate of false negatives on tests
2. Typical arthritis-like illness, plus one or more other (atypical) organs/systems affected at the same time: In addition to half the arthritis-like illnesses being un/misdiagnosed, virtually all of the other organ/system illnesses remain un/misdiagnosed
3. Same as #2, but the atypical symptoms do not appear at first, and only appear months to years after the arthritic symptoms, whether the arthritic symptoms remain or are resolved with (or without) treatment: Virtually all of the other organ/system illnesses remain un/misdiagnosed
4. Without typical arthritis-like illness, with one or more other organs/systems affected: Virtually all of the other organ/system illnesses remain un/misdiagnosed.
If one examines the possible outcomes of Lyme described above, it becomes apparent that it is indeed the new Great Imitator. The number of diagnosed cases of Lyme is just the tip of the iceberg of un/misdiagnosed illnesses caused by Lyme. There is an epidemic of Lyme cases that are either unsuspected as being Lyme and/or have been determined falsely not to be Lyme. In fact, there are many more cases of un/misdiagnosed Lyme than confirmed Lyme.
There are many reasons for this unfortunate situation. The problem starts with inaccurate conventional criteria for the diagnosis of Lyme. Most of the time, Lyme is only diagnosed correctly when there is:
1. the pathognomonic onset of a tick bite surrounded by a bull’s-eye lesion
2. and subsequent joint inflammation, malaise and pain
3. and a positive blood test.
The first problem with these criteria is that many people are bitten by a tick, but don’t remember the bite. They may not have even felt or seen the tick. It is easy for a deer tick to bite and then either drop off or be knocked or scratched off without the victim’s awareness.
Even when there is a known tick bite, Lyme can be transmitted without the pathognomonic surrounding bull’s-eye lesion. But the public and many physicians are taught to ignore tick bites unless they have a bull’s-eye lesion.
Also, the original infective tick bite may have been years or even decades earlier. One patient of mine suffered from a case of CNS Lyme from a tick bite received more than three decades earlier. Without prompting from the physician or some alternative method of evaluation, such distant causes may never be discovered. Most patients do not remember tick bites from the distant past, even if they were aware of them at the time. At most, the patient might remember a period of time during which they did receive tick bites or lived in areas where ticks were common.
Another seldom-mentioned problem has to do with assumptions about the vector cause. Conventional medical dogma states that Lyme is only transmitted by deer ticks, with the slight possibility of transmission from other tick species. But it is entirely possible that other vectors like fleas, mosquitoes, gnats, other insects, rodents and even humans can transmit or spread the disease. Unfortunately, if a patient claims no history of a tick bite, Lyme as a possible diagnosis is dismissed by most clinicians. This creates a self-fulfilling limitation on our understanding of how Lyme is spread.
Even if Lyme is suspected by a physician and a blood test is done, many cases of Lyme are missed because the tests for Lyme have a notoriously high rate of false negatives. Despite the type of test done, the rate of false negatives is more than 50%. Unfortunately, a false negative test can have devastating results. The current physician and all subsequent physicians think they have ruled out Lyme. Despite a growing recognition that Lyme tests are inaccurate, patients still want to believe in tests. If a test result comes back as a false negative, that usually ends the inclusion of Lyme as a suspect in any of the patient’s health problems, whether they are from typical or atypical Lyme.
Conversely, when a doctor suspects and treats for Lyme without test results or with negative test results, this also creates problems. Patients doubt the diagnosis and may abandon treatment, or they lack patience and compliance for a treatment program. Or, the patient may seek additional tests from other doctors. If these come back with a false negative result, doubt and lack of compliance may ensue.
On the other hand, some labs and blood tests for Lyme produce an exceedingly high level of positive results … so high that either everyone in the country has Lyme, or the tests have a high rate of false positives. I suspect the latter is true.
Another problem occurs when Lyme is suspected but unconfirmed, and it is treated with antibiotics as a therapeutic test. The results are often ambiguous. It is well known that many cases of Lyme do not respond to antibiotics. But often a patient is treated with antibiotics anyway “to see if it will work,” with the assumption that if it doesn’t, it is not Lyme. Even though this is faulty logic, many patients with Lyme are told by their doctors that “It must not be Lyme, because there was no response to the antibiotics.”
There are also cases of CNS neurological Lyme, in which the patient has a negative blood test and a positive diagnosis on testing of cerebral-spinal fluid (CSF). Very few doctors think of or are willing to order a spinal tap for testing CSF, and even fewer patients are willing to go through with this invasive and expensive procedure. While a spinal tap could confirm Lyme in many cases, its use is usually either unknown or rejected.
Where does all this leave us in diagnosing Lyme? Personally, I rarely order a blood test. Either patients have had them before, or the risks of a false negative are too high. Since most patients don’t understand the issues of false negative tests, they are apt to go elsewhere if the doctor, as an ND, wants to start a long and potentially expensive treatment program without a conclusive diagnosis.
I sidestep this problem by using Electrodermal Tests (also known as EAV or Meridian Stress Assessment). Of course, I also try to correlate history, symptoms and the natural course of the illness with a diagnosis of Lyme. Dealing with Lyme in this way is really a diagnosis of exclusion. Many of my patients have already been to a variety of doctors and had most or all of the tests required for an exclusionary diagnosis. Such tests include those for RA, Lupus, ANA, other infections, chem screens and diagnostic imaging (depending on the type and location of symptoms).
If I “diagnose” Lyme in a patient who has not had other exclusionary tests, I offer them the choice to proceed with more tests or with treatment. Most of my patients trust my use of Electrodermal Testing and/or do not want the expense, delay or inconvenience of further testing. However, it is important for the doctor to know what the problem is or is not. For example, if the patient is having severe headaches from a case of CNS Lyme, the other typical causes of headaches should be evaluated. It is also helpful to explain the issues to the patient, and to obtain informed consent.
Ironically, NDs may find themselves being judged by a double standard in diagnosing and treating patients with unconfirmed or atypical Lyme. Other types of general practice physicians may doubt the ND’s assessment. But many MDs who specialize in treating Lyme approach it as an ND might. The emerging standard of care among Lyme specialists is to treat for Lyme whenever the doctor strongly suspects it, even without confirming laboratory tests. The main difference is in the type of treatment.
Some patients do respond well to an initial treatment with antibiotics if treated soon after being infected, but many do not. Although this article is not about Lyme treatment, the subject does merit a few comments. As many NDs know, Borrelia burgdorferi is very tricky to kill with drugs or medicines. It is suspected of having a variety of defenses, such as:
1. A variety of mechanisms for developing antibiotic resistance
2. The ability to shift to a cyst form that is impervious to antibiotics (pharmaceutical or natural)
3. The cyst form can be dormant for a long time, until it shifts back to the active form and causes a “relapse” or what is mistaken as a new condition
4. In addition to cysts, other antibiotic-resistant shapes and forms have been seen
5. It is suspected of incorporating host DNA into its cell membrane, allowing it to “hide” from the host’s immune system.
One patient had been treated for more than two years with IV antibiotics without any effect. When the patient asked her Lyme specialist MD what to do next, he said, “I guess we’ll have to stimulate your immune system to do the job.” When she asked, “How do we do that?” he replied, “I don’t know.” That’s when the patient came to see me.
There are countless natural medicines and treatment protocols for treating Lyme. One reason for this follows an old maxim: The less effective treatments are, the more of them there are. I heard from a patient who tried drinking salt water as a cure, because he had read about it on the Internet! Needless to say, he did not get rid of his Lyme this way, but he did get diarrhea.
Some natural medicines seem to be more effective than others for treating Lyme, but I’ve found that the most effective treatment is the standard naturopathic approach: Find obstacles to cure and remove them. I’ve had many cases of Lyme that have apparently been cured, even without using medicines that are supposed to kill Borrelia burgdorferi or stimulate the immune system. While it may be useful to stimulate the immune system, this approach is overemphasized by the public and physicians alike. Usually the immune system is quite capable of stimulating itself when whatever is repressing or suppressing it is removed. See the accompanying case studies for some of these cures based on removing obstacles, along with a representative sampling of atypical Lyme cases I’ve seen.
I have diagnosed and treated dozens of Lyme cases in which the patient did not have typical arthritic symptoms. Some of the other atypical conditions or symptoms caused by Lyme include pericarditis, testicular pain, abdominal pains, gastro-intestinal dysfunction, visual changes, rashes, pleuritis, chronic fatigue, fibromyalgia and vestibulitis. In most of these cases, cures have been achieved primarily by finding and treating obstacles to cure, rather than by following the allopathic paradigm of killing the pathogen with a drug … even when the “drug” is one or more natural medicines. The types of obstacles to cure can run the whole range of human experience, from metal or pesticide toxicity to improper nutrition to deep psycho-spiritual issues. If I have learned anything in treating patients in general, it is to suspect Lyme with almost all patients. If I have learned anything from my patients with Lyme, it is to focus on basic naturopathic principles. Whether one’s diagnosis of Lyme is confirmed or not, it is hard to go wrong with this approach.
Shandor Weiss, ND started the Arura Clinic in Ashland in 1989. Licensed by the state of Oregon as an ND and acupuncturist, he also has specialty training in homeopathy, environmental and body-mind medicine. Dr. Weiss received his undergraduate degree in ecology and environmental studies from Hampshire College in Amherst, Mass., then moved to Berkeley, Calif, to study natural and holistic healing. He completed his education in Portland, graduating in 1988 from NCNM and the Oregon College of Oriental Medicine. Dr. Weiss served as a research consultant to the National Institute of Health’s Office of Alternative Medicine; has written many lay and professional articles on health; and enjoys reaching the public through lectures, teaching, radio and television. As an ND, Dr. Weiss integrates environmental medicine and an ecological model of evaluating patients as an integral part of his practice.
Case Studies and Discussions
The first neurological Lyme case I saw was the patient mentioned in the main article, whose doctor gave up on using antibiotics. This woman, in her late 30s, had been working more than full time at a challenging job. She also was a mother, wife and community activist. In other words, she was busy most of the time and had the energy to be so busy. Then she became ill. Her symptoms were profound fatigue and a loss of sensation in both lower legs. She could not feel the ground with her feet. It was difficult to walk. There was no joint pain, but since she lived in area with an epidemic of Lyme, she was tested for that. Repeated tests were negative. She saw three neurologists and had several MRIs. The images showed swelling around the spinal cord in the upper cervical area. MS was suspected, but all three neurologists did not feel that was a correct diagnosis. The first two MDs basically patted the woman on her head, told her it must be “all in her head” and told her to go home and get some rest and perhaps counseling. Since she was so fatigued, rest was all she was getting already. The third MD said to her, “We don’t know what is causing your illness, but you can be sure something is. I hope you find what it is.”
Eventually the woman was referred to an Lyme specialist by a neighbor. This fourth MD did a spinal tap and found high levels of Borrelia burgdorferi antibodies in the CSF. When I saw her after two years of failed antibiotic therapy, I found the obstacle to cure was toxicity – in particular, DDT toxicity. After a detox treatment with homeopathy and a few supplements, the patient recovered completely … even without any medicines to kill the bacteria. Her own immune system did the job.
CNS infection with Borrelia burgdorferi is a common atypical form of Lyme. The symptoms can mimic MS, migraine headaches, cervical subluxations, brain tumors and many other conditions. One patient I saw had already been to an orthopedic doctor and a neurologist. Neither could diagnose the cause of her symptom: a loss of grip control in her right hand. This woman, in her 20s, kept dropping things. That was her only symptom. I diagnosed the cause as Lyme, even though she had no memory of a tick bite. Since this patient was from another state, she went back home and asked her neurologist to test for Lyme. Fortunately, in her case the blood test was positive, and she responded well to antibiotic treatment.
Most CNS cases of Lyme present with neck pain and headaches. The neck pain can look like pain from any other cause, and it can even respond temporarily to cervical manipulations. But the benefits of such treatments do not last. Also, the pain feels “deeper” and affects the patient more systemically, or diffusely. Some patients feel the pain in a specific area at times, while at other times the pain is felt more as a generalized sense of stress. This stress can be so extreme as to cause panic attacks. Even though the cause is from inflammation and edema in the spinal cord, the patient is not able to localize the discomfort. One of my patients with CNS Lyme needed benzodiazepines to manage the stress and panic caused by cervical inflammation. She gradually was able to manage the pain and stress without drugs, and recovered by dealing with deep-seated psychological issues that had been depressing her immune system. But recovery took a long time. Such cases require skill, persistence and patience. Unless MRIs are performed, the patient has to be reassured that some other, more frightening illness is not present.
It appears that in CNS cases, Borrelia burgdorferi usually infects the meninges and/or the other layers surrounding the brain and cord. For a complete understanding of the symptoms this can cause, it’s a good idea to review the signs and symptoms of meningitis.
It is likely that Borrelia burgdorferi also can infect brain and cord cells themselves. To make matters more complicated, Herxheimer reactions from bacterial die-off can result in neurological or psychiatric symptoms. It seems that bacterial components act as neurotoxins. These toxins can cause almost any symptom, from intense migraine headaches to hallucinations.
One of my patients with CNS Lyme suffered from fatigue, debilitating neck pain, occasional migraine headaches and depression. The depression probably was a result of the changes in this man, who was in his 40s. He had been an extreme sports enthusiast, but could no longer enjoy these activities. He also was facing a mid-life crisis of sorts. To make a long story short, the obstacle to cure in his case was that he was on the wrong track in life. This patient’s cure included spiritual studies, meditation and a career change. Of course, all of this really meant creating a new identity of self, from a life devoted to fun to one that had more of a sense of purpose. Even though this patient was taking a variety of medicines to “treat” Lyme, he only really made progress when he started to meditate. Ironically, meditation itself resulted in Herxheimer reactions. He had to stop meditating for a while until the painful effects of his self-stimulated, de/repressed immune system had subsided.