How to find an LLMD (Lyme Literate Medical Doctor)
By Bryan Rosner, author of The Top 10 Lyme Disease Treatments
Due to political controversy and legal challenges facing Lyme doctors, most of them prefer to keep a low profile. For this reason, they can be difficult to find. Additionally, good etiquette in the Lyme disease community dictates that when discussing doctors in public (including public internet discussion groups), their names should be kept private. If your doctor tells you that he or she is okay with his or her name being public, then you may be able to ignore this etiquette. However, when in doubt, assume that the above is true. Many people expect to find a list of Lyme doctors on the internet, where they can just grab a name and a phone number. However, as a result of the political and legal climate, this is not possible. Instead, you must contact one of the below Lyme disease organizations and request a doctor referral. With these caveats in mind, here are the instructions for how to get a Lyme-literate physician referral in your geographic area:
Lymenet.org “Seeking a Physician” Forum: You can get a custom referral to an LLMD from www.lymenet.org. When you reach the homepage, click on “Flash Discussion,” and then click on “Seeking a Doctor.” You will be asked to provide your city, state, and contact information, and a Lymenet.org forum member will contact you with a physician referral.
Lyme Disease Association Doctor Referral Service: Visit www.lymediseaseassociation.org and click on “Doctor Referral.” You will be asked for your contact information and a doctor referral will be provided.
International Lyme and Associated Diseases Society (ILADS). Contacting ILADS is also a method for getting a physician referral. Use their website: www.ilads.org or email them at email@example.com. ILADS is the "gatekeeper" for most Lyme-literate physicians in the USA. This website also offers extensive information and video interviews with top Lyme doctors. Furthermore, they coordinate the largest Lyme-related conference in the world. Learn more at www.ilads.org.
Another helpful tool is to understand how Lyme doctors are treating Lyme disease before you even have your doctor's appointment. We recommend you purchase our newly published book on how 13 LLMDs currently treat Lyme disease in their practices. Click here to learn more. (Advertisement)
Now, a very important note about finding an LLMD doctor:
Whatever you do, do not simply walk into any random general practitioner’s office or general infectious disease doctor’s office thinking that you are going to get good Lyme disease care! Awareness of Lyme disease already very low among U.S. physicians. By seeing a doctor who is not versed in the condition, you are almost guaranteeing that you will be sent out of the office empty-handed, if not ridiculed. Presently, Lyme patients have a difficult time gaining recognition and validation in the United States. In fact, most U.S. physicians do not even acknowledge the existence of chronic Lyme disease. The first step toward placing the odds in your favor is to start with the most knowledgeable physician you can find instead of wasting time trying to educate other, potentially closed-minded doctors.
The one exception to the rule of finding a Lyme-literate physician at the outset is if you should happen to have a strong relationship with a general practitioner who is not aware of the condition but who has instead proven to you over past relationship that he or she is open-minded, accommodating, humble, and inquisitive. Such a physician (often a family friend, or, perhaps, a relative) may be able to help you by mere virtue of the fact that he or she may be willing to do what it takes to become educated on Lyme disease. After all, when it comes to Lyme-literate physicians, the key qualities to seek are open-mindedness and humility. To educate your local physician on Lyme disease treatment strategies, you might consider buying him or her this book, which is based on interviews with 13 LLMDs and describes how they treat Lyme disease in their practices.
However, if you approach this trusted doctor and they are hostile toward your hypothesis that you or your child may be suffering from Lyme disease, then run the other way! There is no point in wasting your time trying to change a doctor’s mind when you can instead spend your time and energy cultivating a professional relationship with one of the hundreds of physicians out there who will be accommodating and helpful to you. The simple fact is that most physicians are not only ignorant of Lyme disease, but they are actually taught in medical school that it is a simple, rare infection that they will never see in their practices. This type of dogma is ingrained in most physicians. Instead of fighting it, just accept that the Lyme disease of medical practice field is years ahead of its time, and find someone who is already "on the right bus," so to speak.
The importance of finding a helpful, informed physician cannot be over-stated. Countless parents and patients have lost years of life, spent thousands of dollars, and endured immeasurable stress in hopeless arguments with closed-minded physicians, all the while unaware of the helpful and resourceful physician who may be practicing medicine just a few blocks down the road.
Also keep in mind that simply finding a Lyme-literate physician is not enough. In addition to such literacy, a physician must also prove to you that he or she has an open mind and is willing to pursue ongoing education. The reason for this requirement is simply that Lyme disease is currently not well understood, and any physician who successfully cares for patients of the disorder must be committed to remaining on the cutting edge of modern medical science and interventions. This is especially difficult for physicians given their demanding work schedules and lack of time for keeping up with new research and ideas. You need to make sure your chosen doctor can dedicate the time it takes to not only become educated, but also stay educated. This is one of the reasons why we published our newest book which focuses on cutting edge treatments physicians are using in their practices in modern times.
Additionally, make sure your physician knows that Lyme disease does not just involve Borrelia infection, but also dozens of other co-infections, including Babesia, Bartonella, Ehrlichia, mycoplasma, and many others. Or, if he or she does not already know this, make sure that he or she is open-minded enough to consider the possibility.
Want to keep up with our Lyme updates? Follow us on Facebook now! Also, don't miss our latest books, many of which were published in 2012 and 2013.
Finally (are you getting tired of all the requirements yet?), do not forget that you, as the patient (or patient’s advocate) are ultimately responsible for your healthcare. Do not buy into the lie that you are a “consumer of prepackaged health care.” Contrary to what the medical establishment would have you believe, there is no success to be found with blindly relying on the medical establishment. The responsibility for your success or failure in healing lies with no one other than you, and you alone! Do not cave in to the enticing desire for easy answers from a physician or specialist who seems to know it all. While it may feel comfortable to blindly rely on decrees passed down by medical professionals, the truth is that such comfort is short-lived and the only real road to success requires your active questioning, participation, and intellectual engagement in the healing process. For additional information, click here to find out how 13 of the nation's top Lyme doctors treat their patients.
When treating Lyme disease, it is important to remember that not all doctors are Lyme-literate. In fact, most physicians in the USA do not believe in chronic Lyme disease. So, you can waste a lot of time and energy going to the wrong doctor. Therefore, you should be very selective and invest the time and energy up front to select a physician who understands Lyme disease and can help you establish an effective, aggressive treatment campaign for chronic Lyme. For more information, see The Top 10 Lyme Disease Treatments paperback book. (Advertisement directly below)
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The following are specialty areas and geographic locations for which LLMDs are available:
City, ST, Specialty, Mobile, AL, Lyme Specialist, Hematologist, Scottsdale, AZ, CAM, Vancouver, BC, , Aptos, CA, Holistic, Chico, CA, Neurologist, Chico, CA, , Chico, CA, General Practice, Corte Madera, CA, , Los Altos, CA, , Los Altos, CA, GYN Reproductive Endocrinologist, Los Gatos, CA, GYN Endometriosis, Nevada City, CA, Family Practice, Oakhurst, CA, Family Practice, Ojai, CA, , Ojai, CA, Palo Alto, CA, San Cruz, CA, San Francisco, CA, San Francisco, CA, San Francisco, CA, San Francisco, CA, San Francisco, CA, San Jose, CA, Santa Rosa, CA, Naturopath, Santa Rosa, CA, Family Practice/CAM, Santa Rosa, CA, Family Practice/CAM, Santa Rosa, CA, Family Practice/CAM, Santee, CA, Family Practice, Torrance, CA, Integrative, Trazana, CA, , Hope, BC, Family Practice, Centennial, CO, Fibro and Fatigue Clinic, Lafayette, CO, Family Practice, Steamboat Springs, CO, Internist, Greenwich, CT, Psychiatry, , , Mystic, CT, Buhner Protocol, New Haven, CT, Pediatric, Adolescent, Norwalk, CT, Fibro and Fatigue Clinic, Orange, CT, Neurologist, Ridgefield, CT, Internist, Southport, CT, Neurologist, Stamford, CT, Psychiatry, Westport, CT, , Wilton, CT, Internist, Wilton, CT, Psychiatry, Delray Beach, FL, Internist, Lauderdale Lakes, FL, Neurology, Miami Beach, FL, Internist, Geriatrics, Naples, FL, Neurology, Naples, FL, Psychiatry, Marietta, GA, Fibro and Fatigue Clinic, Marietta, GA, Rheumatologist, Louisville, KY, Neurology, Pineville, LA, , Boston, MA, Infectious Disease, Newton Centre, MA, Clinical Psychologist, Waltham, MA, Fibro and Fatigue Clinic, Bel Air, MD, Internal, Occupational, Holistic, Easton, MD, Gynecology, Gaithersburg, MD, Family Practice, Gaithersburg, MD, Medicine, Laurel, MD, Family Practice, Lutherville, MD, Internist/Infectious Disease, Lutherville, MD, Cardiologist, Lutherville Timonium, MD, Internist, Pocomoke City, MD, Family Practice, , Rockville, MD, Internist, Integrative, Towson, MD, Environmental, CAM, Towson, MD, Internal Medicine, Andover, ME, , Freeport, ME, Internal Medicine, Kennebunkport, ME, , Lincoln, ME, Internal Medicine, Troy, MI, Fibro and Fatigue Clinic, Washington, MI, , Bloomington, MN, Family Practice, Duluth, MN, Infectious Disease, Forest Lake, MN, , Minneapolis, MN, , Minneapolis, MN, Consults Only, Winona, MN, Family Practice, CAM, Columbia, MO, Infectious Disease, Columbia, MO, , Kansas City, MO, Infectious Disease Teacher, Springfield, MO, Family Practice, Ocean Springs, MS, Internal Medicine, Huntersville, NC, Infectious Disease, Epping, NH, Family Practice, Portsmouth, NH, Naturopath, Wolfeboro, NH, , Absecon, NJ, Infectious Disease, Basking Ridge, NJ, Rheumatology, Brachberg, NJ, Ophthalmology, Cherry Hill, NJ, Pain Management, Chester, NJ, Psychiatrist, Psychopharmacologist, Chester , NJ, Pediactric, Egg Harbor Twp, NJ, Pain Management, Engelwood, NJ, Clinical Psychologist, Essex Fells, NJ, Pediactric, Flemington, NJ, Vector-Borne Disease Consultant, Hammonton, NJ, , Howell, NJ, Internal Medicine, Howell, NJ, Pediactric, Jackson, NJ, Internal Medicine, Margate, NJ, Pain Management, Morristown, NJ, Psychiatrist, Mountainside, NJ, Psychologist, Parsippany, NJ, Clinical Psychologist, Red Bank, NJ, Neuro-Psychiatry, Red Bank, NJ, Neurologist , Riverdale, NJ, Rheumatology, Sewell, NJ, Pediatrician, Somers Point, NJ, Infectious Disease, Somerville, NJ, Ophthalmology, Treehold, NJ, Psychotherapist, Washington Twp, NJ, Pain Management, Watchung, NJ, , West Caldwell, NJ, Rheumatology, Santa Fe, NM, Internal Medicine, CAM, Las Vegas, NV, Fibro and Fatigue Clinic, Armonk, NY, Internist, Critical Care, Brewster, NY, Family Practice, Brewster, NY, Pscyotherapy, Buffalo, NY, Environmental, Chazy, NY, Family Practice, Hyde Park, NY, Internist, CAM, Mamaroneck, NY, Clinical Psychologist, Mount Kisco, NY, Internist, Epidemiologist, New York, NY, Psychiatrist, New York, NY, , New York, NY, Neurologist, New York, NY, Neurologist, New York, NY, Chinese Medicine, Pleasantville, NY, Ophthalmology, Port Jefferson Station, NY, , Rhinebeck, NY, Family Practice, CAM, Rhinebeck, NY, Family Practice, CAM, Middleburg Heights, OH, Fibro and Fatigue Clinic, Beaverton, OR, Fibro and Fatigue Clinic, The Dalles, OR, Naturopath, Allentown, PA, , Bala Cynwyd, PA, Internist, ID, CAM, Bloomsburg, PA, Emergency Medicine, Coatesville, PA, Clinical/Child Psychology, Colamar, PA, Family Practice, Downingtown, PA, General Family Practice, East Stroudsburg, PA, Family Practice, Exton, PA, , Glen Mills, PA, CFS, Hermitage, PA, Internist, Family Practice, Hermitage, PA, Family Practice, Holland, PA, Psychiatry, Kennett Square, PA, Family Medicine, King of Prussia, PA, Fibro and Fatigue Clinic, Lancaster, PA, Neuro-Opthamology, Paoli, PA, , Philadelphia, PA, Research physician, Philadelphia, PA, Holistic doctor, Pittsburgh, PA, Fibro and Fatigue Clinic, Shillington, PA, Hormones, Williamsport, PA, Radiation Oncologist, Williamsport, PA, Internist, Rheumatology, York, PA, Family Practice, Hodges, SC, Family Practice, Dallas, TX, Fibro and Fatigue Clinic, Ft. Worth, TX, Fibro and Fatigue Clinic, Richardson, TX, Cardiologist, CAM, Victoria, TX, Pediatric, Murray, UT, Fibro and Fatigue Clinic, Fairfax, VA, Rheumatology, Portsmouth, VA, Family Practice, Sterling, VA, Family Practice, Vienna, VA, , Brandon, VT, Integrative Family Physician, Brattleboro, VT, Buhner Protocol, Waitsfield, VT, Buhner Protocol, ,
|The following is an excerpt taken from the
Beginner's Guide to Lyme Disease,
written by Dr. Nicola McFadzean.
Dr. Nicola McFadzean is a doctor in San Diego; she practices medicine as a Naturopathic physician.
You can learn more about her at: http://www.restormedicine.com
The book is available for $39.95 by clicking here.
The following is an excerpt taken from the book, The Beginner's Guide to Lyme Disease, written by Dr. Nicola McFadzean.
Testing for Lyme disease is yet another aspect that fuels the controversy and exacerbates the issue of misdiagnosis and under-diagnosis of Lyme. This is because many Lyme tests are not sensitive enough to catch all cases. This is truer of some types of tests than others, as we will see.
The thing to stress before we launch into a discussion on lab testing for Lyme disease is that Lyme disease is primarily a clinical diagnosis which can be made based on a person’s history, symptom picture and physical examination. Laboratory findings should be used to back up, or confirm, clinical presentation. Many cases of Lyme disease are not diagnosed because of negative lab results, even in the face of a textbook presentation of signs and symptoms, or a strong enough case history to warrant the diagnosis. In many cases a therapeutic trial of an agent that would kill the Lyme bacteria, such as an antibiotic or an herbal antimicrobial, can give valuable clues into the presence of infection. Theoretically, if the person did not have Lyme disease, a course of antibiotics would not dramatically affect their symptom picture. An antibiotic trial that validates the Lyme diagnosis might give a response of either an improvement, or a worsening of symptoms consistent with a Herxheimer reaction (this will be explained in more detail in later sections). Either way, some shift in symptoms would be expected.
In Section One in our discussion of the inherent political challenges in Lyme disease, we learned that the CDC surveillance criteria were initially designed for epidemiological purposes, such as, to track prevalence of Lyme disease cases. They were never meant to be used for diagnostic purposes.
As a reminder the CDC surveillance criteria entail a two-tiered approach to testing, and dictate that a positive sensitive ELISA or IFA must be followed by a positive Western Blot with a defined number of approved antibody bands to be considered positive.
We will see, however, that this two-tiered approach is a flawed system and leaves many people inaccurately diagnosed, and without the medical support and treatment they need.
So that you know what all these tests are, let us get some definitions and descriptions out of the way.
In broad terms, tests for Lyme disease can be categorized as direct and indirect.
Lab testing efficacy is determined by sensitivity and specificity. Sensitivity is how likely the test is to find the infection if it is present. A highly sensitive test has a high probability of finding, or measuring, a particular criterion. Specificity, on the other hand, is how accurate a test is in measuring a particular organism, species, or substance. If a test is specific it will clearly define a marker, without too much variability, confusion, false positives or false negatives. In other words, a highly sensitive test will find a needle in a haystack. A highly specific test will tell you for sure that it is a needle.
PCR stands for Polymerase Chain Reaction. It is a test whereby the DNA, or genetic material of the bacteria, is detected in the blood, serum or other bodily fluids such as the cerebrospinal fluid (CSF) or urine. The downside of the PCR test is that the bacteria often like to hide in the tissues, not simply float around in the blood, so they are difficult to detect. The upside is that the PCR test is not dependent on immune reactions or immune function. A person with a dampened immune response is just as likely to show a positive PCR as a person with a strong immune response. This may not be true of indirect tests, which rely heavily on immune response.
A PCR test that detects a spirochete in the blood is quite specific. While there is some possibility of a false positive, a spirochete visualized is a spirochete visualized; it is specific. The test is not that sensitive, however, as spirochetes may not be easily found in the blood due to their burrowing and hiding in the tissues. If the spirochetes are not hanging out in the blood stream, looking for them there may be a futile endeavor. For this reason PCR tests may be more useful in the early stages of infection when spirochetes are more likely to be in the blood.
PCR testing is also limited by the number of Borrelia strains it can identify. Since there are several strains of Borrelia worldwide known to cause disease in humans, a PCR must assess a range of those strains to be most sensitive.
The culture test for Borrelia has not been widely used clinically to date, although a culture test is now available in the United States.
In a culture test, a small amount of the patient’s blood is removed from their body and introduced into a specific medium that promotes growth of a certain type of bacteria. The bacteria that grow are identified by their cell characteristics and growth characteristics, further confirmed by immuno-staining. To go one step further, PCR testing can be run and various strains identified from the sample. In simple terms, the blood sample is put into a specific medium, allowing some time for the Borrelia to grow, then double-checked that it is Borrelia by examination of its traits and its DNA.
The Borrelia culture is a step forward in that it is deemed more reliable than the Western Blot test, and more sensitive than a PCR. Advanced Laboratory Services, Inc. in Pennsylvania, USA, now offer a spirochete/ Borrelia culture test, which at the time of writing it is only available within the United States.
Advanced Laboratory Services, Inc.
501 Elmwood Ave
Sharon Hill PA 19079
A biopsy is another direct test as it measures the actual microbes, not an immune response to a microbe.
Biopsies are tissue samples that are taken from almost anywhere on the body and evaluated for different infections. Although biopsies are not commonly done in the Lyme community, they can be helpful especially when there is a localized zone of infection, such as at the site of a recurring EM rash. Biopsies are also sometimes done to assess small fiber nerve degeneration, which is linked with neuropathy and progression of Lyme disease.
A biopsy is a more invasive procedure than a blood draw, and is not among the first-line lab tests performed to evaluate or diagnose Lyme disease.
Lyme Direct Antigen Test
An antigen capture test looks for Borrelia bacteria, or parts of Borrelia bacteria, in the urine. Again, it is a direct test as it is not relying on an immune response but rather looking for the microbe itself. The antigens are parts of the Borrelia bacteria – when isolated from the urine, they are combined with rabbit antibodies specifically targeted to B. burgdorferi antigens. These antigen-antibody complexes are treated with a color developing solution, which turns blue-purple and shows the presence of the Borrelia.
The urine antigen test is often done with a "provocation". By giving antibiotics a few days prior to the collection, thus provoking the bacteria, we can accelerate their destruction making their remnants more likely to show up when measured in the urine.
The ELISA test, the problem child of Lyme testing and diagnostics, is the mostly widely run test in the general medical community, and also one of the least useful. Unfortunately, it is the test that is used as a first port of call for many doctors, and a negative result on the ELISA, also used as a screening test for Lyme disease, is used, often incorrectly to rule it out. The ELISA test is offered by many labs worldwide and is often covered by insurance (in fact, insurance often requires that it be the first test run, and will not cover other tests without the ELISA).
There are some fundamental problems with relying on the ELISA test to diagnose Lyme disease. First, the ELISA test does not have adequate sensitivity to fit the two-tiered approach recommended by the CDC. The group responsible for Lyme disease proficiency testing for the College of American Pathologists stated that a screening test must have at least 95% sensitivity to provide an adequate screen, and that the ELISA test simply does not have that level of sensitivity.1
In fact, studies have shown that in patients with culture-positive Lyme disease, only 65-70% show an antibody response. Therefore, a full 30-35% of confirmed Lyme cases would have been missed with ELISA testing alone.
To understand how indirect tests such as the ELISA work, we must understand some basic facts about the immune system.
Antibodies are immune cells, and there are two different kinds of antibodies that are evaluated in Lyme testing (and really, testing for any infection). One is the IgM antibody and the other is the IgG antibody. Typically an IgM antibody is going to present much earlier in infection, approximately two to four weeks after exposure. The IgM antibody may stay elevated, indicating an ongoing active exposure. It may also convert to an IgG response. The IgG antibody has a slightly different role. It is not a "first responder" like the IgM antibody. It comes in later, after several weeks of infection, and may stay elevated for long periods of time – months or even years after the initial infection.
Think of the IgM antibodies as the marines (M for marine). They are the first on the scene when there is a threat or invasion; they attack first and ask questions later. The IgG are the ground forces (G for ground). They let the marines check out the situation first then come into play later, maybe several weeks or even months later. Both arms of this immune system military are necessary and have their strategic roles. The timing of each becomes relevant according to which diagnostic tests are ordered in which time frame post-infection.
Even though they are first on the scene, even the IgM antibodies take a few weeks to appear, typically within 2-4 of the initial infection. One can see then, that a patient presenting with an EM rash a few days after infection needs to be immediately evaluated and diagnosed clinically. By the time antibodies appear, the infection may already have been present for a few weeks and valuable treatment time been lost. I would go so far as to say that a flu-like illness with a known exposure to ticks, such as through camping or hiking, should be viewed this way.
IgG antibodies can be confusing as they can also show exposure to an infection without an active infection. An example of this might be after a vaccine, where a variant of a microbe is introduced to the immune system to force it to have an immune response. That way, IgG memory cells are formed, and if that individual encounters the infection again, the IgG memory cells recognize it right away, direct the immune system into action (quick, send in the Marines!) and mount a quicker, more efficient response to the microbe. IgG antibodies may reflect an individual being exposed to Borrelia without becoming sick with it.
One of the problems with this testing is when it measures immune response. Since Lyme disease is known for dampening (weakening) the immune response, this becomes very problematic. The bugs in this case reduce a person’s capability to mount an immune response – the indirect tests such as ELISA are measuring an immune reaction – and so negatives arise even in the presence of disease. Further, in more chronic infections, IgG antibodies may be absent 50% of the time, posing further complications for diagnosis in chronic illness.2,3,4 Subsequently we also evaluate IgM antibody response in persistent or recurrent disease.
The other limitation of antibody testing is that if an individual is treated with antibiotics early, to the extent that the infection is mostly eradicated, it can reduce or completely quell their antibody response. Therefore, they could test negative but still have some infectious process in their body. At a later stage, if symptoms return, most of the antibody markers may not be present.
ELISA testing is also hampered by the actual testing methodology. Testing must be developed to detect more unique and specific antigens for Borrelia. Most commercially available kits use a whole cell sample of the Borrelia microbe. More sensitive testing would recognize and use smaller, more specific pieces of the bug that are known to be reactive, not the whole thing lumped into one.
We can see a double-pronged problem with the ELISA testing. First, the test itself is not sensitive enough. Second, the Borrelia microbe curtails immune response so that the signals necessary to trigger a positive result are lower. Together, it is a profoundly unreliable system.
Let’s use the analogy of sound. If a microphone recorded sound, it would need the sound to be at a certain decibel (volume) level to be able to record it, but the microphone would also need to be of good quality with a decent level of sensitivity. If either the volume was too low or the microphone was of low quality (not designed to record lower and higher notes, just the central ranges), then the sound would not register or be accurately recorded. If both were present – poor sound output and low microphone quality - the chances of a great recording would be doubly jeopardized.
This is how it is with ELISA testing for Lyme disease, and why it is so crucial to combine laboratory findings with the clinical picture to make an accurate diagnosis. Indirect lab tests alone, especially ELISA tests, leave a lot to be desired in terms of sensitivity, and many very ill patients will go undiagnosed. Despite CDC guidelines and their two-tiered approach, a negative ELISA test cannot rule out Lyme disease and should never be used as a stand-alone test.
Another indirect test is the Immuno Fluorescence Assay, or IFA test. It detects antibodies against B. burgdorferi, but it pools the various antibodies (IgG, IgM and IgA). Therefore, it is looking for an immune response but is not as variable based on time after infection in comparison with the ELISA. The IFA is typically run in conjunction with Western Blots. It should not be used instead of a Western Blot.
The IFA test is useful when run with other tests, to make up part of the picture. It is not necessarily a stand-alone test and is not necessarily diagnostic in and of itself. While concerns have arisen over time as to the specificity of the IFA for Lyme-specific antibodies and for its potential for cross-reactivity with antibodies to other spirochetes, studies have shown that with high quality testing procedures and highly experienced lab technicians, the IFA test has good specificity and sensitivity. Therefore the IFA should be run through a lab that specializes in Lyme testing to increase its validity.
Western Blot Test
The Western Blot test is one of the foremost tests used in the evaluation of Lyme disease. It is also an indirect test, as are the ELISA and IFA; however it is a more sensitive test if performed by a laboratory that looks for all the bands that are related to Borrelia. IgM and IgG antibodies are evaluated separately, with the IgM being detected as early as one week post-exposure.
Unfortunately, as has been the case with anything so far relating to CDC criteria, the CDC has also played a role in creating limitations in Western Blot testing and reporting.
A Western blot reports certain numbers, or "bands", which can be positive, negative, or indeterminate. The bands represent certain antigens, which are the parts of the bacteria that the immune system reacts to.
There is a discrepancy as to which bands are clinically significant, and how many of the bands need to be positive to get a positive result. FDA-approved, commercially available kits (such as the Mardx Marblot) are restricted from reporting all of the bands. These rules were set up in accordance with the CDC surveillance criteria. Private laboratories that are not beholden to these rules and criteria are free to produce tests that actually help people get an accurate assessment.
In IgM testing, by CDC criteria, two of the following bands must be positive to record a positive result:
IGeneX, on the other hand, a U.S. based specialty Lyme lab, recognizes the following bands as clinically significant and relevant to Lyme disease:
Their research has shown that the 31, 34 and 83-93 bands are significant and quite specific to Borrelia infection. The 41 band, on the other hand, shows a lot of cross-reactivity with other flagella-bearing organisms, so a positive 41 can be indicative of other types of infections.
Clearly, the expanded IGeneX criteria give a more rounded and inclusive view of Lyme immune recognition, and allow for a more clinically helpful assessment. Many Lyme-literate medical doctors and experts in Lyme disease believe that just one positive or even equivocal of the above bands is clinically significant.
The other benefit of IGeneX testing is that the bands are reported according to a range – from IND (indeterminate, or weak positive), +, ++, +++ all the way through to ++++. The stronger the immune response to a band, the more +’s are reported. Therefore, even if a patient’s test results are negative, but they have, for example, two IND bands (an IND does not "count" as a positive band), it gives clues that the person may be affected by Borrelia. It may seem logical that the more +’s a patient has, the more aggressive and severe their infection, but in fact the opposite might be true. Because Lyme disease disables the immune system, sometimes the sickest individuals have a lower immune response and a ‘less positive’ looking test result; it does not mean they are any less sick.
The IgG Western Blot has even more stringent criteria than the IgM Western blot. At least five bands must be positive (out of a possible 10) to be regarded as positive according to the CDC. The test looks for 10 bands: 18, 23-25, 28, 30, 39, 41, 45, 58, 66 and 83-93 kDa. Results showing four positive bands, or five equivocal (borderline) bands, report as negative and are completely disregarded. Bands 31 kDa and 34 kDa - both of which are significant antigens that appear later in the immune response and are highly Lyme specific - so specific, in fact, that these bands represent the antigens used in developing the Lyme vaccine - are also excluded. How ironic that these antigens were relevant enough for developing the Lyme disease vaccine, but not relevant enough to be included in the laboratory reporting for Lyme. (By the way, the Lyme vaccine is no longer available due to numerous lawsuits by people who believed that the vaccine made them sick and actually infected them with Lyme disease; the manufacturer cites "low sales" as the reason for the withdrawal in 2002).
To demonstrate this, one study showed that although 89% of patients with EM rash developed IgG antibodies as detected by Western Blot some time during their disease, only 22% were positive by the standards of the CDC.5
Another limitation to the Western Blot is the CDC’s belief that an IgM Western Blot should only be used within the first month of infection, even though other studies have shown that the IgM Western Blot can be positive even in recurrent or persistent disease. Some patients who have been ill for many years will still show a positive IgM Western Blot and a negative IgG Western Blot. Other patients with culture-positive Lyme disease will remain seronegative on any kind of Western Blot testing (approximately 20-30% in fact). Such is the challenge of Lyme disease testing.
Although the most clinically useful of all indirect tests, a positive Western Blot still only suggests exposure to Lyme disease, it does not diagnose Lyme disease. Diagnosis is still done based on the clinical picture – a person’s history and exposure coupled with their current symptoms.
TESTING FOR CO-INFECTIONS
Along with testing for Borrelia, it is imperative to test for co-infections. Information gained from co-infection testing can make a significant difference to the treatment path chosen. Different microbes require different medications and different herbs to counter them. Probably the best example of this is Babesia. Babesia is a parasite, while Borrelia is a bacterium. The medications that work well for Borrelia will not work well for Babesia. The consensus among hundreds of Lyme-treating doctors is that undetected and untreated co-infections are one of the key reasons for treatment failure in Lyme disease.
There are a few different ways to test for co-infections. The main types are antibody tests, FISH tests and PCR tests.
The co-infections that IGeneX offers antibody testing for are:
Ehrlichia chafeensis (HME)
Anaplasma phagocytophila (HGA)
Rickettsia rickettsii/ typhi
Antibody testing, similar to what we discussed in the indirect tests for Borrelia, measures the immune system’s reaction to these various microbes. The tests done are IgG and IgM. Remember, IgM is a marker of either a new infection or current/ active infection. IgG indicates either prior exposure or a more chronic/ longer-term infection.
In interpreting these tests, I regard an elevation in either antibody clinically significant when combined with a symptomatic patient. IGeneX criteria for all the co-infections listed above are the following:
IgM <20 negative
IgM 20-160 may or may not indicate active infection
IgM >160 indicates an active infection
IgG <40 negative
IgG 40-160 may or may not indicate active infection
IgG >160 indicates an active infection
As an example, if a patient has an IgM level of 20 for a particular infection, I would consider treating that co-infection, especially if the symptom picture matches that of the co-infection. Remember, for co-infections as well as Borrelia, the diagnosis is based primarily on clinical presentation.
The Fluorescent In-Situ Hybridization (FISH) test is a direct test - it does not rely on immune response and is a way to visualize the microbes directly - that uses a sample examined as a thin smear in order to identify and mark the ribosomal RNA. Under a microscope, the bugs, whose presence indicates an active, current infection, literally glow in the dark.
The Babesia FISH test detects both Babesia duncani and Babesia microti. It is performed on whole blood, since the parasites exist within the red blood cells themselves.
The Bartonella FISH test detects B. vinsonii, B. berkhoffii, B. henselae and B. quintana, so it can detect several different strains. The FISH test actually shows the microbes fluorescing under a microscope. Bartonella, rod-shaped bacteria, have been stained with a substance specific to mark them so a positive result will reflect the sighting of characteristic bacteria of this shape.
FISH tests have a high level of specificity so there are very few false positives. Remember though, a negative FISH does not necessarily mean that the infection is not present. It simply means that it was not detected in that particular sample.
Like the FISH, PCR tests for co-infections are direct tests. DNA, or parts of the DNA of the bacteria, are evaluated in the blood sample. In my experience, FISH tests are more sensitive than PCR tests for co-infections and are more frequently utilized.
By now you may be asking why we test at all, if the tests are not 100% reliable and if Lyme disease is a clinical diagnosis anyway. The answer is that the more information we can gather, the better. Testing can give confirmation on a suspected illness, shed light on which co-infections are present and help in assessing the severity of an infection. For example, if a patient tests indeterminate on the Lyme Western Blot but has a positive FISH test for Babesia and Babesia duncani antibodies at 80 or 160, then they may have a dominant Babesia infection, and treatment should start there.
Similarly, if a patient shows a positive PCR for Borrelia, a positive IgM Western Blot, and all negative co-infection testing, and unless they have symptoms that are pathognomonic of a specific co-infection, their initial treatment should be tailored around the Borrelia. However, another person can have positive antibodies to Borrelia, Babesia, Bartonella and Rickettsia, and in that case, we know we have a complex situation that is going to require several different medications to address them all.
Lab tests are very useful and should be regarded as important pieces of the puzzle. Alone, they do not rule in or out infection, but when combined with history, symptoms, tick exposures and so on can give very useful information to help shape the big picture.
OTHER TESTS THAT MIGHT BE USEFUL
Not only are there tests for the infections themselves, but there are a couple of other markers and tests that can help assess an individual’s health. This is not a complete list of tests as there are literally dozens of tests that may be useful in various scenarios.
The CD-57 is not so much a test to detect Lyme disease as it is an immune marker that tends to be low in the presence of Lyme disease. CD or cluster designation markers are identifying markers on certain immune cells called T cells and NK cells. They give cells their variance in appearance and function. So far, there are approximately 200 known CD’s, numbered according to their order of discovery. Any T cell or NK cell will carry many different CD markers.
If a cell expresses a certain marker, it is designated with the number of that marker and a "+" sign. So if an immune cell expresses the CD-57 marker, it is written as CD-57+. Through laboratory testing, we can measure the number of cells that carry a certain designation, either on the T cell or NK cell.
Clinically, measuring certain CD markers can help evaluate certain illnesses. Lyme disease has been associated with a low CD-57 count – specifically Borrelia infection (as opposed to co-infections). The sicker the patient, the lower the CD-57 count appears to be.
Measuring the CD-57 count can be helpful for a number of reasons. First, other illnesses such as chronic fatigue syndrome, rheumatoid arthritis or multiple sclerosis might mimic Lyme, but those illnesses will not cause a drop in the CD-57, so this marker can help in determining Lyme disease as distinct from other chronic illnesses with similar symptom pictures. Also, the CD-57 can be used to track treatment progress, as it should return towards normal levels as the infection improves. It also can give clues into co-infections. CD-57 levels are impacted by Borrelia but not significantly by co-infections, so if a patient is still symptomatic despite Lyme treatment and has a rising CD-57 count, it can be a clue that co-infections, not the Borrelia itself, are driving the remaining symptoms.
Of course, nothing is as straightforward as it seems, especially in Lyme disease. Many chronically ill Lyme patients present with a low CD-57 count, and despite long-term treatment and a resolving symptom picture, their counts stay frustratingly low. There are sometimes discrepancies between one lab and another, and numbers can fluctuate up and down between readings in ways that do not seem to correlate with the degree of illness or recovery.
It is important to remember that the lab is running the CD-57 on the NK cells, not the T cells. T cells will express CD-57 markers, but they are not clinically relevant to Lyme in the same way that the CD-57+ NK cells are. Running the CD-57 test on the T cells may be one reason for apparent discrepancies in results.
The CD-57 test is a worthwhile test to run as a gauge of immune response to Borrelia. While it sometimes shows inconsistencies, it may provide another piece of the puzzle and more information to shed light on that person’s case. In the United States, the CD-57+ NK test is available through Labcorp as well as IGeneX.
Fry Labs Advanced Stain for Biofilm
We have already seen that the production of biofilm by colonies of bacteria can create bacterial defenses that are difficult to overcome. The bacterial colonies produce biofilm then hide in it, evading antibiotic and immune attack. The colonies become quite sophisticated – they attach to other structures that allow the flow of nutrients in and toxins out of their milieu, making them very resilient.
Fry Labs (Arizona, U.S.) initially began smear testing to provide assessment of Bartonella and other protozoans in the blood of chronically ill patients. As their work progressed, they saw colonies with biofilm in many of the blood samples. They have further developed their stain techniques and can provide insight into the degree of biofilm involvement, literally giving a visual picture of it. In patients who are being treated with antibiotic therapy and making slow or minimal progress, assessing biofilm may be of great value.
Elispot-LTT (Lymphocyte Transformation Test)
Run by Infectolab in Augsburg, Germany, the Elispot-LTT test uses a different part of the immune system to the antibody testing. Antibodies are part of the humoral immune response; we also have a cellular immune response that involves T cells and NK cells. (The CD-57 cell marker described above is part of the cellular immune system).
A Borrelia infection will activate T-cells as well as antibodies. Activation of T-cells occurs immediately after infection, and stops approximately six to eight weeks after completion of effective therapy or when the infection is resolved. Therefore, measuring T-cell reactivity to Borrelia might be another useful diagnostic tool, as it is not as subject to the variability of antibody responses in different patients and at different times of infection.
According to Infectolab, the Elispot-LTT will detect even a single reactive T-cell, is accurate in both acute and chronic infection, and is a helpful indicator of whether infection is truly resolved at the end of therapy. The Elispot-LTT test is available for a range of infectious agents including Borrelia, Chlamydia pneumonia, Chlamydia trachomatis, Ehrlichia, Anaplasma, Yersinia and the Epstein-Barr virus.
firstname.lastname@example.org (email) www.infectolab.de (website)
Inherent Challenges in Lyme Disease Testing
As you can see, there are several challenges to getting accurate and reliable testing for Lyme disease.
The first is that the ELISA test is the first test administered if Lyme is suspected. We have already seen that the ELISA test is not a sufficiently sensitive test to be clinically useful. Unfortunately, many doctors run the ELISA test, and if the results are negative, make a definitive statement that the person does not have Lyme disease. Any discussion of Lyme disease after that meets with cold response or total dismissal.
In those very few cases where the ELISA test comes back positive, a follow up confirmation test would be the Western Blot. If run through larger commercial labs, the Western Blot test is not going to recognize some of the bands that are necessary to give the complete picture, such as the 31 and 34 kDa bands.
Often, if an ELISA is negative, doctors will not run Western blots at all. They have been taught about the two-tier testing – ELISA first, then Western Blot only if ELISA is positive. That two-tiered system was designed for research and epidemiological purposes; it was never meant to be used for clinical diagnostic purposes and is simply not appropriate or adequate in the clinical setting.
Any of the indirect tests have the inherent challenge that they measure immune response. We know that Lyme can dampen immune response, so the very markers needed to diagnose infection are dampened by the infection itself, leading to a lower chance of diagnosis. It is ironic that the more profound and chronic the infection in the body, the lesser the response may be on indirect testing.
Adequate testing for co-infections is often not performed. This leads to an incomplete picture of a person’s chronic infections and may lead to inadequacies in treatment protocols.
Getting the most out of laboratory testing for Lyme disease
There are ways to get more reliable and comprehensive testing done. Here are some ways to maximize laboratory information:
1-650-424-1196 (fax)email@example.com (email)
firstname.lastname@example.org (email) www.frylabs.com (website)
The most important thing to stress is that Lyme disease is still a clinical diagnosis. We use lab testing to support that diagnosis, to give information on co-infections, and to give quantitative information that we can use over the course of treatment to track progress. The best way to get accurate and reliable information is to do testing through a specialty Lyme lab such as IGeneX and to run a variety of test types (both direct and indirect) to increase the likelihood of revealing evidence of the infection. Co-infection testing is imperative to round out the picture.
1Bakken LL, Callister SM, Wand PJ, Schell RF. Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State laboratory of hygiene/College of American Pathologists proficiency testing program. J Clin Microbiol. 1997 Mar;35(3):537-43.
2Engstrom SM, Shoop E, Johnson RC. Immunoblot interpretation criteria for serodiagnosis of early Lyme disease. J Clin Microbiol. 1995 Feb;33(2):419-27.
3Aguero-Rosenfeld ME, Nowakowski J, McKenna DF, Carbonaro CA, Wormser GP. Serodiagnosis in early Lyme disease. J Clin Microbiol. 1993 Dec;31(12):3090-3095.
4 5Aguero-Rosenfeld ME, Nowakowski J, McKenna DF, Carbonaro CA, Wormser GP. Evolution of the serologic response to Borrelia burgdorferi in treated patients with culture-confirmed erythema migrans. J Clin Microbiol. 1996 Jan;34(1):l-9.
6Patient sample, reproduced with permission.
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