I recently saw a woman who had just recently discovered a tick on her chest. In the several days after she had removed the tick, she developed a "bull's eye" rash at the bite site—a circular reddened ring with a clear center. She lived in a rural area outside of Seattle and came to my office not only because of the rash but because she felt a bit ill. Her history and rash was classical for Lyme disease. As there is no blood test that can reliably show up a several day old Lyme infection, I made the diagnosis entirely on these clinical grounds and prescribed a month of doxycycline, an antibiotic in the tetracycline family. Her rash cleared and she felt herself again, but much more importantly she did not go on to develop Chronic or Disseminated Lyme Disease.
A Tick Bite and Bull's Eye Rash Not Required
I wish the majority of my Lyme patients were as easy to diagnose and treat as this woman. Unfortunately, most of these patients show up at my office many months if not several years later and do not remember ever having been bit by tick or ever developing a rash. Less than half of those diagnosed with Lyme disease ever remember these telltale signs. They do not remember the bite because it was on part of the body they could not easily see (or fell off before discovering it) or it could have been a tick in its nymph form, a baby tick so to speak, hardly the size of the head of a pin and very hard to see, though just as infective as a fully grown tick.. And many Lyme patients (less than 50%)simply never get the bulls eye rash or even erethema migrans, a spreading uniformly red rash—the other rash characteristic of Lyme.
However, many of these Lyme patients certainly remember the approximate onset when they began to not feel well, and with my questioning, they can usually trace a pattern of emerging symptoms and gradual health deterioration that lead me to suspect underlying Lyme disease and/or one or more of the associated infections caused by other organisms transmitted through the tick bite along with Lyme—Babesia, Bartonella, Erlichia, Mycoplasma and others. Incidentally, Lyme, Bartonella, and Erlichia are bacteria and Babesia (like Malaria) is a parasite.
Chronic Lyme, The Great Masquerader
How these infections affect our health, the symptoms they cause and the conditions they mimic are both fascinating and frightening. I have seen many ill patients over the thirty years I have been in practice—those who came to me long after having been diagnosed with and having suffered from a chronic illness such as Chronic Fatigue Syndrome, Fibromyalgia, Rheumatoid Arthritis, Multiple Sclerosis, Lupus, Sjogren's Syndrome, Undifferentiated Autoimmune syndrome, Vulvadynia, Interstitial Cystitis, Plantar Fasciitis, and many others. Many of these patients also turned out to have Lyme disease and one or more of the associated infections.
I have seen those who had been diagnosed with a common mental or psychiatric disorder such as Depression, Bipolar Syndrome, Anxiety Disorder, ADD, and others, and many of these patients as well have had Lyme disease and associated infections contributing to or causing their mental/emotional dysfunction. There are patients with acute episodes of optic neuritis, Bell’s palsy (facial paralysis) or uveitis who actually have Lyme disease.
And of course there are all of those patients I have seen who had not been given an official name for their ailments but who simply were not well—those with fatigue, joint and muscle pains, headache, stiff neck, numbness and tingling, night sweats, recurrent fevers, recurrent flu and other respiratory infections, heart arrhythmia/palpitations, mental deterioration (foggy brain, memory problems, concentration difficulty, cognitive dysfunction), sleep disorders, mood disorders (depression, anxiety, anger control issues), ringing in the ears, equilibrium difficulties, and stomach and bowel complaints such as nausea, diarrhea, abdominal pain. The list goes on and on. (For a more detailed discussion of the signs and symptoms of Lyme disease and associated infections, visit www.ILADS.org and www.lymediseaseassociation.org . Also visit www.Igenex.com.
In some of these patients, the treatment of Lyme completely reverses their previously diagnosed conditions or unnamed ailments, and in some there chronic conditions, though not cured, are greatly ameliorated. It is truly gratifying to see the ever escalating downhill course of these patients change toward the better. Incidentally, some Lyme patients are quite ill and medically disabled whereas others may have isolated persistent or recurring symptoms and may not seem to be all that sick.
Why Doctors Miss The Diagnosis of Lyme Disease
These Lyme and associated disease patients have not been diagnosed before coming to my office for a variety of reasons: Their doctors were likely not aware that these patients’ histories and symptom constellations fit the Lyme picture. (For probably the first fifteen years of my practice, I was not aware of the myriad symptoms and masquerading conditions that Lyme and the associated diseases can cause.) Until a doctor develops a special interest in tick-borne illness and reads a journal article or book written by a Lyme literate practitioner or even non-medical writer or attends a medical meeting where a lecture or workshop is offered by a Lyme literate physician or one that subscribes to the practices of ILADS (International Lyme and Associated Diseases Society), this doctor is destined to miss one of the most important diagnoses of patients that visit his/her office. I know that in the past I missed the Lyme diagnosis of many of these patients.
Another reason for doctors missing the diagnosis of Lyme is the fact that most doctors simply order the wrong tests. If doctors suspect Lyme and do blood testing, they usually order the ELISA antibody test for Lyme, a test that would have a very poor likelihood of showing up the infection (it misses approximately 35% of the time). A more meaningful test is the IgM and IgG Western Blot for Lyme, but most doctors order this test only if the ELISA test is positive. Well, as it is not often that the ELISA test is positive, many patients do not "qualify" for the Western Blot.
It even gets stickier from here. Most commercial labs use an FDA approved Western Blot kit for Lyme that omits two of the most Lyme specific bands, bands 31 and 34. So even if a Western Blot is run, it might not show up Lyme in a Lyme patient. The same blood sample might very well show up the Lyme using a Western Blot kit that tested all 16 bands. Sending samples to only Lyme specialty labs would ensure that all bands will be tested. Please do not be assured that simply because you may have seen an infectious disease specialist, that the right tests have been ordered. Most infectious disease specialists subscribe to the guidelines set by the IDSA (International Disease Society of America) and these guidelines, although fortunately being revised, may not currently all be in patients' best interest. (The story behind the ISDA Lyme guidelines is, as you might suspect, quite political.)
Ticks and Lyme Do Not Recognize State Borders
And then there are other reasons patients are not diagnosed. Many doctors are not aware that Lyme disease is in every state in the USA, and is, in fact, nearly worldwide. Information from the CDC suggests that Lyme is limited to certain endemic areas, but the fact is, Lyme carrying ticks have been identified in every state, and patients have contracted Lyme disease in every state. Some doctors are aware of Lyme disease and its symptoms, but are under the false notion that their particular locale is Lyme free and so if their patient has not been traveling out of that locale, then Lyme will not be considered. Also there is the fact that co-infection tests such as those for Babesia, Bartonella, and Erlichia are rarely run. Although official reports state approximately 30,000 plus Lyme cases were diagnosed last year in the US, it is estimated, due to underreporting and under-diagnosis, that there are over 200,000 cases. Lyme is known to be the number one vector borne illness in the US.
Even The Best Laboratory Tests For Lyme May Miss
And even if all of the appropriate tests are run at the very best laboratories specializing in tick borne infections, some patients with Lyme and associated infections will still not show up the infections. For antibody tests which rely on immune system recognition of these bugs, the bugs have to be in the blood stream for lymphocytes and macrophages to recognize them and to initiate an antibody defense against them. Well, these Lyme and the co-infection bugs live inside of cells and try to stay out of the blood stream. If they have been out of the blood stream long enough, then antibody production will be minimal and the tests will not likely show up the infections.
There are other tests, DNA and antigen tests, that do not rely on immune recognition of these infections, but these tests require that at the time of the blood draw or urine collection, the bugs or their antigens are in the blood stream or urine. As you now understand, these bugs do not spend much time in the blood stream. To further compound the difficulty in laboratory diagnosis, there are more strains of Borrelia burgdorferi (Lyme's official name) than there are tests for. The same goes for Babesia and Bartonella—there are many strains. As helpful as lab tests are when they confirm my clinical suspicions, the tests are not as helpful when they are negative, that is when they do not show up evidence of infection. A negative test for Lyme or any of the co-infections does not help me rule out these conditions.
There is another lab test I use, a CD 57 natural killer cell test which, if low enough, is indirect evidence of Lyme disease. When this test is low and all the other lab tests I have ordered do not show Lyme, I am very motivated to continue my pursuit. Even if the CD 57 is normal however, I am still very motivated to keep looking because this test can be normal in a Lyme patient. We need to examine so carefully the history and symptoms and utilize other methods of diagnosis.
Autonomic Response Testing and Quantum Reflex Analysis
It is quite a challenge to figure out what is causing someone to be chronically unwell and often medically disabled, particularly someone who has seen five to ten specialists and has had nearly every medical test there is, including the best tests at specialized laboratories. As you now understand, a very careful and detailed history is paramount and may provide the only substantial clues. Here is where the art of medicine comes into play!!!
However, there are other tools I utilize that assist me, not only in diagnosis, but in establishing what treatment will be most effective and best tolerated. What has become increasingly important in my practice is the utilization of kinesiology testing, a form of muscle testing. I use specifically the Autonomic Response Testing (ART) technique as well as the Quantum Reflex Analysis (QRA) technique. With such techniques we are able to actually ask the body 1.) What the current issues are (infections, toxicities, deficiencies, interference fields or blockages), 2.) What treatments will be effective for these conditions that I find, and 3.) What treatments will or not be compatible with the person being tested (will they cause side effects or create new problems).
It is so common in Lyme treatment for a person to feel much worse before feeling better. This can be from adverse side effects of medications or from Herxheimer reactions or both. Or it can be due to the person's detoxification routes being blocked. (A Herxheimer reaction can commonly occur when an antibiotic or other antimicrobial medication kills the targeted bugs and the bugs release too many toxins for the body to handle and the toxins then elicit a cytokine and inflammatory response from the immune system. What results are symptoms such as headache, body aches, nausea, unusual fatigue, skin manifestations, malaise, toxic feeling and more.) ART and QRA have given me an enormous advantage in both diagnosis and treatment. It took me over twenty five years of practicing integrative medicine to accept the validity of muscle testing (thank you Pam Alboher, PhD), and I feel so fortunate to be utilizing this tool as it has become indispensable in my practice of medicine.
Brief Treatment Overview of the Chronic Lyme Patient
Chronic Lyme and co-infected patients require an integrated approach often combining pharmacologic, nutritional, herbal, hormonal, and immune enhancing treatments. They require intensive nutritional supplementation to replace the deficiencies induced by Lyme—one of which is severe zinc depletion. A state of insufficient zinc will readily disarm white blood cells, the very cells responsible for fighting Lyme and other infections.
We now know that Lyme is capable of inducing Kryptopyrroluria (KPU), which is also known as Hemopyrrollactamuria(HPL). KPU/HPL is a primary mechanism by which one becomes depleted of zinc, manganese, biotin, chromium, vitamin B-6 , molybdenum and other critical nutrients. Not only will these deficiencies impair immune function, but along with impairment of the production of heme, they will render dysfunctional the methylation cycle and other pathways that facilitate the detoxification of lead, mercury and other toxins—which suppress immune function and can cause other widespread adverse effects. KPU/HPL is not limited to chronic Lyme patients by any means, but its incidence is estimated to be about 80% in these patients. When you realize that just zinc alone is required for over 300 biochemical reactions in the body, it is not so difficult to comprehend why Lyme patients are often so compromised and why nutrient supplementation is so important.
Such deficiencies, toxins and metabolic disruptions unattended can explain why Lyme treatment confined exclusively to antibiotics or non pharmacologic anti infective agents will often lead to unsatisfactory outcomes. A foundation of nutritional repletion, heavy metal detoxification, and body-wide metabolic repair usually needs to be laid in order for efforts toward microbe elimination or control to be successful. Foundational efforts for chronic Lyme patients may include adrenal support measures and other endocrine/hormone support including thyroid, estrogen, progesterone, testosterone, and melatonin.
Many of these patients also need measures to enhance the desired effects of sleep: restoration and healing. One commonly overlooked measure is the reduction of electromagnetic fields and microwave (cell phone, WiFi, etc.) radiation polluting their bedrooms (see www.safelivingtechnologies.ca). Some patients require diet counseling, physical therapy to prevent the de-conditioning that frequently happens with an exhausting illness, and some need counseling and anti-depressant/anti-anxiety medications or supplements.
Even incorporating all of these measures, a chronic Lyme and co-infected patient may require a year of treatment or more with various anti-infective agents, whether prescription or herbal antibiotics or other anti-microbial approaches. Prior to and during treatment, it is also usually essential to treat biofilms, a protective shield that Lyme and other organisms engineer to prevent their hosts immune cells and anti-infective agents from gaining access. Overlooking biofilms will commonly sabotage treatment success.
Chronic Lyme disease and its co-infections may be the underlying causes of one’s chronic or recurring multiple symptoms and poor health. These infections may also be an underlying cause of such established diagnoses as Chronic Fatigue Syndrome, Fibromyalgia, and many other conditions. There is often no history of a preceding tick bite and bull’s eye rash. Otherwise competent doctors, even infectious disease specialists, will commonly miss this diagnosis. There are many ways to test for Lyme disease and co-infections. Some laboratory test are rather unproductive and others very useful. However, even the best tests at the best laboratories can miss the diagnosis. Therefore a very careful history and a health professional’s intimate knowledge of Lyme and co-infection symptoms are indispensable. What further increases diagnostic acumen (and treatment success) is the utilization of such tools as Autonomic Response Testing and Quantum Reflex Analysis—kinesiology/muscle testing techniques.
Although Lyme and co-infections are all significant, Lyme is by far the worst, as it suppresses the immune system. If one were to contract only Bartonella or Mycoplasma, it would be less difficult to eradicate, either with treatment or from the immune system's own competence. But when there is Lyme along with coinfections, the coinfections make the Lyme symptoms much worse, and having Lyme makes it harder to overcome the co-infections.
Successful treatment for chronic Lyme disease and co-infections requires an integrated approach that not only targets the infective organisms and their biofilms but restores nutritional and hormone deficiencies, enhances immune competence, detoxifies heavy metals and other toxins, and restores normal sleep. Medication, nutritional and herbal support, detoxification protocols, counseling and, I must say, perseverance are all part of what can achieve the best outcomes.
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