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Detailed info on Lyme and related Testing


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Im posting a copy/paste from the website. I found this very useful. Many parents at work also find this info useful. I thought I would post it. It helps put together a list of tests that can be done before an LLMD visit if you have a cooperative pediatrician or another doc. This helps parents maximize benefot from the long awaited LLMD visit.The explanations about regular labs v/s lyme labs are useful too.







One of the most crucial elements in the successful treatment of Lyme disease is an accurate diagnosis of Lyme and of its potential co-infections. The sooner the diagnosis can be made from the time of the initial infection with Lyme or its co-infections the better. As we have discussed in previous chapters, treating Lyme disease when it is still in a localized condition offers the best hope of a long-term recovery. However, accurately diagnosing this disease is not always an easy task. Symptoms of Lyme disease manifest in a wide variety of ways, making its detection more challenging. In addition, the most commonly used diagnostic screening tests for Lyme can often yield unreliable results. They often fail to indicate Lyme when it is present in the body, with up to one third of cases of the infection being missed due to a high rate of “false negative” results. For these reasons, I recommend that all patients who suspect that they have Lyme disease seek out doctors who are most knowledgeable about Lyme disease and its co-infections for accurate diagnosis and effective treatment.


Diagnosing Lyme Disease


The most challenging problem with Lyme disease is that there is no universally accepted method for making its diagnosis. The only exception is the presence of the erythema migrans (EM) rash. This rash is considered prima facie evidence of the infection, and Lyme’s presence does not require further confirmation with diagnostic tests to undergo a full course of Lyme disease antibiotic therapy. Although there are a variety of diagnostic tests that are available to evaluate a possible case of Lyme disease, there is no single perfect test. Even the more accurate types of available tests can still fail to detect Lyme disease because of the manner in which the Bb bacteria can “hide” as its spreads throughout the body. I want to next discuss some of the key issues concerning Lyme testing.



Pitfalls of Lyme Testing


As we have previously discussed in this book, the standard Lyme screening tests have a major problem of “false negatives.” That is, they have a large potential to miss cases of true Lyme disease by calling the person “negative” when the person does in fact have active Lyme. However, not all positive test readings for the disease mean that Lyme is an active problem at this time. In some cases, positive readings are only an indication that at some point in a person’s past he or she was infected with the Bb bacteria, at which time the body developed antibodies to combat it. In other words, the antibodies may have been produced by the body during its successful past campaign to destroy and eliminate the Bb bacteria. However, the continued presence of these antibodies against Lyme may mistakenly be taken by a physician as a sign that the disease is still active. Also, there are times when viral illnesses (such as those of the herpes family) or other infections (such as syphilis, gingivitis, bacterial endocarditis) may trigger the body to make antibodies against Lyme, even though there is no active Lyme infection itself. Either of these scenarios, in turn, could lead to unnecessary treatment with antibiotics.


Lyme-aware physicians rely not only on diagnostic tests, but also on their own clinical judgment and experience. Fundamentally, Lyme is a “clinical” diagnosis. This means that an accurate diagnosis depends on the astute physician’s wisdom as he/she puts together the whole clinical picture—symptom patterns, risk factors, exposure history, examination findings, test results, and other clinical indicators such as response (or lack of response) to treatment. One of the most useful tools for helping you to decide whether Lyme is a possibility for you is the Symptom Checklist that I shared with you in chapter 2.


Diagnosing the Co-infections


As discussed in chapter 2, many Lyme patients are also infected with co-infections. These microorganisms may be transmitted to a person at the same time that Lyme is transmitted, or they may enter the body at a different time than does Lyme. A high percentage of so-called “Post-Lyme Disease Syndrome” individuals that present to the offices of Lyme-aware doctors have undiagnosed co-infections. As with Lyme disease, the diagnosis of these organisms can be very challenging. Many times the diagnosis of a co-infection is made by an experienced physician based purely on clinical grounds. This frequently happens when laboratory testing does not confirm the diagnosis. Dr. Kenneth Liegner, co-author of Coping with Lyme Disease, clearly states the problem encountered by physicians who are attempting to sort out the confusing clinical picture of Lyme and the other tick-borne diseases (TBDs):

With tests for several tick-borne illnesses not always reliable, and with overlapping non-specific symptoms, the treating doctor is often confronted with a dilemma. The problem faced by the doctor, responsible for improving the health of an often very seriously ill or debilitated patient, is that he or she must often resort to empiric treatment based on educated guesses, inferential reasoning, and observation of response (or lack of response) to trials of therapy. In other words, often the doctor must rely on “playing the percentages” in terms of what most likely is going on with the patient. While this approach may seem “unscientific,” this analytic approach is often necessary given the unsatisfactory diagnostic testing tools available today.

I agree with Dr. Liegner that often in order to help severely ill patients with Lyme and other TBDs, doctors must rely on their clinical experience and judgment, rather than testing alone, in order to help patients recover their health.


The following diagnostic tests are recommended when screening Lyme patients for the possible tick-borne co-infections. Let me reemphasize that it is very important for these infections to be considered because they are such important co-factors in a patient’s symptoms. I will discuss the diagnostic approach to the major co-infections.



This is the parasitic organism that causes babesiosis. Babesia is rarely detected using one diagnostic test alone. To effectively screen for Babesia, Lyme-aware physicians generally screen for 2 strains—Babesia microti and WA-1 (Babesia duncani)—by testing for antibodies (by IFA or ELISA testing) made by the body against those organisms.


Another very useful test for Babesia is known as the FISH (fluorescent in situ hybridization) test. The FISH test is performed on thin blood smears (tests used to detect germs in white blood cells) and is able to detect the RNA (genetic material) of Babesia. If this test is positive, it is very strong evidence of the presence of active Babesia. The advantage of the FISH test is that it will detect other subspecies of Babesia in addition to B. microti and B. duncani. (A direct thick and thin blood smear using a staining technique called “Giemsa” can also be done by one’s local or commercial labs to look for Babesia organisms in red blood cells; however, it is an insensitive test except during acute Babesia, particularly when fever is present.)


A final potentially useful test is the Babesia PCR (polymerase chain reaction). Unfortunately, in my experience it is also not a sensitive test and is the least useful of the three tests mentioned.


All three of these tests—Babesia IFA, FISH, PCR—are available through IgeneX, a laboratory specializing in Lyme disease and other tick-borne organisms. Medical Diagnostics Laboratory (MDL) has two of the tests—Babesia ELISA and PCR. Both labs are excellent and I utilize both regularly. (See the resources section for more information.) However, as mentioned, Babesia can frequently escape detection by diagnostic tests. Therefore, many times babesiois must be a clinical diagnosis made by physicians who are experienced in its detection and treatment.



This bacterium is perhaps the most challenging of all the co-infections to identify. Common strains of Bartonella, such as B. quintana and B. henselae, can usually be detected using antibody tests that are available at most medical laboratories. The PCR test can also be used to screen for Bartonella. See the resources section to learn of labs that perform Bartonella PCR testing.


Antibody tests may fail to detect Bartonella even when it is present by PCR testing. Many times the diagnosis of Bartonella (or BLO as we discussed in chapter 2) is a clinical diagnosis, in that it is based on a patient’s symptoms, the doctor’s examination, and the elimination of other possible diagnoses.


There is one test that may be useful in screening patients suspected of being infected with Bartonella. This test may also be particularly useful in the follow-up of patients with Bartonella/ BLO. This blood test is called “vascular endothelial growth factor” (VEGF). This test measures a substance that is produced by the Bartonella microbe in order to facilitate its entry into the body tissues it likes to inhabit. Elevated levels of VEGF often (but not exclusively) mean that a patient is infected with Bartonella. By monitoring VEGF levels during the course of treatment, physicians can monitor the progress of treatment (antibiotics). When VEGF levels return to normal, it generally means that the antibiotics have been successful and can be discontinued. The VEGF test is available from standard commercial laboratories.


Ehrlichia and Anaplasma

These organisms are in the family of bacteria known as Rickettsia. Remember, as I discussed in chapter 2, the diagnosis and treatment of these microorganisms should be prompt and based on clinical grounds. Treatment should not be based on test results alone, which results may be negative early in the course of the infections. As far as lab reliability, standard commercial lab tests generally do a good job of detecting antibodies (IgM and IgG) for both human monocytic ehrlichiosis (HME) and human granulocytic anaplasmosis (HGA), formerly known as human granulocytic ehrlichiosis. In some cases, however, blood smears or the PCR test may be considered, as well.


Rocky Mountain Spotted Fever (RMSF)

This infection is caused by another organism in the family of bacteria known as Rickettsia. In general, it is believed that RMSF only rarely, if ever, becomes a chronic infection. Therefore, unless there is a clinical history that strongly suggests RMSF, most Lyme-aware doctors do not screen for RMSF. However, if it were going to be tested, standard commercial laboratories do an adequate job in detecting RMSF. Remember, as with HME and HGA, treatment must begin with suspicion of the infection and not upon confirmation with antibody testing.



Most people have been exposed to a small “atypical” bacterium called Mycoplasma. Interestingly, many of the symptoms of chronic Mycoplasma are similar to Lyme symptoms. From the standpoint of testing, serology for Mycoplasma has only limited usefulness; however, PCR is useful to detect active cases of Mycoplasma.


Acute and Chronic Virus Infections

Often patients who are chronically ill and who test negative for Lyme and other coinfections are suffering from chronic viral infection. There are well-documented times when viral infections have been known to cause “false positive” Lyme antibody tests. For this reason, I recommend that chronic viruses be considered as possible offenders when one is undergoing evaluation for tick-borne illnesses. There are several common culprits that may require testing, including the following:

-West Nile virus

-Cytomegalovirus (CMV)

-Epstein-Barr virus (EBV)

-Herpes zoster virus (HZV)

-Herpes simplex 1 (HSV-1)

-Herpes simplex 2 (HSV-2)

-Human herpes virus 6 (HHV6)

-Parvovirus B19

-Colorado tick fever

-Powassan encephalitis

-Eastern equine encephalitis (EEE) and Western equine encephalitis (WEE)—these should be suspected in cases where meningitis is suspected.


-Hepatitis viruses—B and C

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I also would like to mention that my daughter has elevated IGG's for many of the infections mentioned here (CMV, EBV, all the Herpes, Mycoplasma, few others). I assumed we had a false positive lyme test. Fortunately, we saw an LLMD who ran more tests, and determined she had co-infections (Bartonella, RMSF) as well. We are now treating all.

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Really nice information on that link. I like the info about false negatives and false positives and other viral infections that it could be if not lyme.


I was the one who had the VEGF testing. Our LLMD uses it as a tool if she suspects Bartonella. I had it done through Labcorp. My LLMD suspected bartonella for me and my result was a little high so she will watch it and see what happens with treatment.



Edited by Suzan
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Really nice information on that link. I like the info about false negatives and false positives and other viral infections that it could be if not lyme.


I was the one who had the VEGF testing. Our LLMD uses it as a tool if she suspects Bartonella. I had it done through Labcorp. My LLMD suspected bartonella for me and my result was a little high so she will watch it and see what happens with treatment.



Susan- Is the VEGF used with children as well?

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Susan- Is the VEGF used with children as well?


I don't know, she did not request it for either of my dd's yet but in our orig. appt with her, she did not suspect co-infections so maybe she just started with me. I will let you know if I find anything out about it. I don't meet with our LLMD until end of January.



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