Testing

The information outlined here on testing for Lyme disease and related co-infections is based on my own personal experience.  It may not be an all-exhaustive analysis of possible testing options and is not intended as a substitute for your own research.  Many of the comments represented are opinion as there are numerous debates in the arena of Lyme testing.

It is important to differentiate between tests that look for antibodies and tests that look for antigens, or the actual organisms (or DNA of the organisms themselves).  Antibody testing can be highly unreliable (as can antigen testing).  Lyme disease often evades the immune system and thus false-negatives are not uncommon.  It may be only after the start of treatment that one finds a Western Blot, for example, becoming positive. This is generally due to the recovery of the immune system and the immune system's ability to now begin to mount an attack and recognize the foreign invaders.

1) ELISA (Enzyme Linked Immunoassay) -  a simple, inexpensive test for detection of antibodies created as a response to an infection with Borrelia Burgdorferi (the main causative agent in Lyme disease).  Personally, I do not believe this test is of any significant value and may represent a doctor that is not well-versed in diagnosing and treating Lyme disease.  It may be a sign to turn and run to find a new doctor if your doctor is relying on an ELISA test to determine the course of your care. In one study, the test was found to be 55% inaccurate.  Thus the odds are better with a simple coin toss.  The test is not recommended until at least four weeks after exposure. Reference The C6-peptide ELISA is a more accurate form of the ELISA test.  A positive ELISA must be followed up with a Western Blot.

2) Western Blot - This is likely the most commonly used test for Lyme disease.  It is still an antibody test and thus false negatives are not uncommon, but it is, in my opinion, the best place to start.  Western Blot test results will include both IgG and IgM assays.  In many traditional infections, IgM is an indication of recent infection whereas IgG is an indicator of late infection.  With Lyme Disease, there appears to be a cycling between IgM and IgG and thus, these are not accurate indicators of the length of time the infection has been present in most cases.   In my opinion, IGeneX is the best place to have this test performed.

It is critically important that one not look at the NEGATIVE or POSITIVE summary result of the Western Blot test.  That criterion is based on CDC guidelines which many argue are not appropriate for Lyme disease.  Instead, it is important to look at all of the bands and map those to the known Lyme-specific bands (those bands that represent evidence of serological exposure to Borrelia Burgdorferi).  According to Dr. Charles Ray Jones, these are:  18 23 30 31 34 37 39 83 93 Reference Other doctors focus on 23 31 34 39 93 as the most important bands.

Additional information on the specific bands and what they mean can be found here.

If any of these bands appear in either IgG or IgM, that is an indication of past or present infection with the causative agent in Lyme disease.   Thus, that is NOT a clear "negative" test result; "something" consistent with infection with Borrelia was observed.  Some labs reports only + (positive) and - (negative) and ignore equivocal or IND (indeterminate) bands.  This is, in my opinion, an error.  If anything is visible, this is not negative. Quest, for example, does not report IND bands whereas IGeneX does.  In my opinion, testing for Lyme disease via Quest, and most other major labs, is a waste of time and money.  Something else to consider is that most labs in the US only test for Borrelia burgdorferi.  This may miss many strains of the Borrelia organisms, especially those from Europe.

IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test.  If results from the initial Western Blot are positive for bands 30 or 31 only, it is possible that these could be due to cross-reactivity with several different types of viruses.  In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses.

3) PCR (polymerase chain reaction) - a sensitive method of testing where minute amounts of DNA are looked for.  Though many consider this method of testing to be useful, I have not found that to be the case.  In a January 2006 presentation that I attended by Dr. Aristo Vojdani (head of Immunosciences Lab), it was noted that PCR tests are positive somewhere between 6% and 15% of the time.  Thus, it was stated that this is not generally a useful test for the evaluation of Lyme Disease.  For PCR to be useful, it should be expected that it may take repeated tests in order to get a positive result.

4) Lyme DOT-BLOT is an assay for the direct detection of Lyme antigen in the urine.  The Reverse Western Blot is an antigen detection test in urine where the urine is exposed to rabbit antibodies for Borrelia Burgdorferi.  More information can be found here.

5) IGeneX offers the IFA (immunofluorescence assay) for Borrelia.  It has shown many people that have had consistently equivocal or negative results that, in fact, they do have infection consistent with Lyme disease.

6) CD-57 - We have all likely heard of people with HIV/AIDS getting their T-cell counts or CD-4 cell counts checked on a regular basis.  Current information suggests that there is a similar population of NK (natural killer) cells called CD-57 cells that are known only to be suppressed in the presence of Lyme disease.  Generally guidelines are that a score of < 20 indicates advanced or highly active Lyme disease.  Scores of 20-60 are indicative of active Lyme disease where scores > 60 start to suggest that the Lyme infection is less active.  A normal test result would be > 200.  It is the opinion of some doctors that treatment is necessary until the CD-57 test score is 150 or above.  The lower the result, the more likely a relapse if treatment is terminated.

The test can be an indication of progression of disease or of progress in treatment.  However, it should be noted that it is not uncommon to see only small changes in the results until the end of treatment where the results often then jump quickly to higher levels.  It may be the case that this test can both be used as an indicator of Lyme disease presence and as a marker for when to consider stopping treatment.  Unfortunately, there are people that feel they are recovering and still have low CD-57 scores as well as those that have high scores and are still quite ill.  The test doesn't seem to provide consistent value for every patient.  For more information on the CD-57 test from a recent article in the Public Health Alert, go here.

7) In mid-2007, I did the new "Borrelia Burgdoferi Direct Fluorescent Antibody by Flow Cytometry" from Central Florida Research.  The result was "NEGATIVE" which hopefully is a good sign after having treated for almost two years.  I'd welcome the experiences of others with this test as well to help me form a more complete opinion.  I think it is worth considering though as of late 2009, I still have not heard many doctors using this lab. The one downside I have heard is that they may not look at any strains of Borrelia other than Borrelia burgdorferi and thus may miss infections with other strains of the disease.

Update: In November 2008, I was contacted by a reader of my site indicating that they had done both Central Florida Research and NeuroImmunology Labs (no longer available).  The Central Florida panel reported that they were entirely "NEGATIVE' while the NeuroImmunology results showed abnormal levels for Borrelia, Ehrlichia, Babesia, Bartonella and unrelated spirochetal infections.  The reader contacted me suggesting that CFR might not be the best recommendation to give to others looking for testing advice.  Given that my result was also negative, it does lead one to some questions about the usefulness of the test.

Another reader of my website contacted me regarding the Central Florida Research testing.  They concur that the lab seems to have many false-negatives when the same patient is positive by other labs such as IGeneX.  They, however, shared that the same CFR test that runs around $500 dollars is available for $252 without a doctor required to place the order through a site called mymedlab.com.  The patient receives a test kit, gets the blood drawn locally, and waits for the results.  According to the lab, there is no difference in the test ordered through this site and CFR directly.

8) Fry Clinical Laboratories offers a number of tests for Lyme and co-infections.  I think they are a very good option and one of the few, if not the only one, labs that looks for Babesia and Bartonella in a blood smear.    I had them perform an ANA and antibody tests for Anaplasma, Babesia, and Bartonella.  My tests showed Ehrlichia antibodies as well as Bartonella antigens (the actual organism) in the blood smear.  I did not have a positive result for Babesia, however, I have seen other test results from this same lab that did show clear indication of Babesia.  I would welcome further feedback if you have done these tests as well.  To see my blood smear results, go here.  Contact by phone at 480-991-4555 to request a test kit or you can order the kit online at www.frylabs.com.

Update: While I do believe that Dr. Fry is finding some very exciting things and may eventually change the face of how we think about and approach Lyme disease, the lab is still evolving their understanding of what exactly they are seeing on their tests.  Early on, lab results often suggested Bartonella.  This later changed to haemobartonella and later changed again I believe.  I'm excited about the work that this lab is doing and look forward to hearing more of their findings, but the results may not yet provide practitioners with a clear understanding of what is being observed and what to do to treat it.

9) The latest lab on the block for Tick-Borne Illnesses is Clongen.  As I have most of the information I need with regards to Lyme at this point, I have not any tests run by them, but some of the big docs are starting to use Clongen.  I would welcome any feedback on this lab.

I am particularly excited to see that they offer testing for other strains of Borrelia such as Borrelia afzelii and Borrelia garinii.  I'd like to do their Brucella testing in the near future as that has been one microbe that has come up for me in several different bioenergetic testing systems.  A list of their tests can be found here.

Though the extensive panel for Lyme is over $2000, it is quite an impressive list of organisms that they are testing for:

Borrelia burgdorferi
Babesia microti
Bartonella henselae
Anaplasma phagocytophilum
Mycoplasma fermentans
Borrelia lonestari
Borrelia afzelii & garinii
Coxiella burnetii
Ehrlichia chaffeensis
Ehrlichia ewingii
Francisella tularensis
Rickettsia species (9 species)

10) For Mycoplasma testing, Dr. Garth Nicolson recommends Viral Immune Pathology Labs.  More information on VIP can be found here.

11) MELISA testing was traditionally employed for testing for allergic responses to various metals.  It is also available as a potential method for diagnosing Lyme disease by looking at reactivity of blood cells to different strains of Borrelia.  Details on the LTT-MELISA test for Lyme Disease can be found here.  

For residents of the United States, the test is now being performed by a lab in Canada called ImmunoTox Labs.  The test runs about $450 USD.  As of November 2009, the test is also available through NeuroScience in the US.

12) Bowen Q-RiBb (Quantitative Rapid Identification of Borrelia Burgdorferi) was an interesting test for Lyme Disease.  As of early 2007, the test is no longer available.  It was done by Bowen Research and Training Institute, a research facility.  I personally had the test done and found the information to be of some value.  However, the test is debated and many LLMDs would not use it.  I thought the test may have provided a data point that could have been of value to some especially at the beginning as additional confirmation of the disease.  It should be known that there were only a handful of negative results on this test in its history.  In the eyes of some, this spoke to the prevalence of the organism.  In the eyes of others, it drew questions about the reliability of the testing procedure.  The photos below are my personal results from Bowen Labs in 2005:

Testing for Co-Infections

My experience has been that testing for co-infections is a critically important piece of the puzzle.  My initial Western Blot was equivocal and yet, I had evidence of Babesia, Ehrlichia and Bartonella.  This helped to round out the facts in support of my Lyme Disease diagnosis.  I have had the clearest results from the standard IgM/IgG antibody tests (outside of energetic medicine using ART or EAV which were far superior) from IGeneX and the test above from Fry Clinical Labs when it comes to co-infections.  I also firmly believe that people with Lyme generally have at least one co-infection (in fact I would go as far as to say almost always if not always).  Each co-infection may require different types of treatments and unless all of them are addressed, the chances of recovery are lessened. Here are some additional thoughts on co-infections: Co-infections are the RULE, not an exception The average child with Lyme has 2-5 co-infections with an average of 3. Treatment of co-infections is required and often, they must be treated BEFORE or concurrent with the Borrelia treatment itself. If you don't test for and treat co-infections, you are not putting yourself in a good position for healing. Almost everyone with chronic Lyme likely has 1 or more co-infections. Co-infections require DIFFERENT treatments in many cases. Do not assume that you are covering them with only the Lyme treatment. Many people don't even know which ones they have. Co-infection testing is often unreliable as well and you need to repeat them over time. It took 4 months for my Bartonella to appear and almost 8 for Babesia to finally appear, but they were there. If you think you only have Borrelia, odds are you have not looked closely enough.

For an article on co-infections in the Public Health Alert, go here.

My Recommendations

Panel 6050 from IGeneX which includes Western Blots, the Lyme IFA, and PCR. I would also get a comprehensive co-infection series done as well. I would look at the Master Co-Infection Panel which is panel 5099.

As an alternate approach, the Western Blot from IGeneX, the CD57 from LabCorp, and a co-infection panel from Fry Labs (mentioned above) may be another good option.

If you have been infected for at least six months, I would do the CD57 test. A fantastic article on the test can be found here.  LabCorp test code is 505026.

I would also definitely do a good heavy metal urine challenge test, viral testing, and a good parasite test.  All too often, people focus too much on just the Lyme and in my opinion miss many of the other important things that are also going on.

Labs which I have found useful for testing around Lyme Disease are IGeneX and Fry Clinical Labs.  I'm optimistic with regards to Clongen as well though have not used them myself at this point.  I personally would stay away from most other labs when doing Lyme-related testing.

LIA (Lyme in Autism) Foundation has created an excellent list of tests that are recommended for autism.  It is my opinion that these apply to anyone with chronic illness.  LIA Foundation recommendations can be found here.