"Dr. Nick Harris, president of IGeneX .......who spoke on laboratory testing for Lyme disease, further emphasized the testing problem created by low tissue densities of spirochetes, noting that serial sections of a patient who had Lyme carditis revealed only one spirochete................He stated that 'the PCR is a very sensitive tool, but there are some pitfalls. The laboratory has to recover at least one organism, or the DNA from at least one organism. A positive test says, 'yes, we've found the DNA of Borrelia.' aA negative says 'that sample is negative'......"from:
"While the Lyme spirochetes grow to high densities in ticks.....in mammals there is an extremely low density, probably less than one spirochete per gram of tissue or blood. This fact plus the probable abitlity of the spirochete to bind IgM antibody to itself are two reasons why it is so difficult to test for the presence of Lyme disease."
"Regarding the PCR, Dr. Burrascano believes it is a technique which looks promising but has serious limitations. One very important thing to remember when considering antigen-capture tests in general, he stated, is that 'the spirochetes of Lyme do not live in the liquid portions of the body; they are deep tissue infections'. He stated that it is a very rare occurence , especially in later Lyme, to find spirochetes in the spinal fluid, in the urine or in the blood, and he feels that this is a big limitation of the clinical usefulness of PCR testing which needs to be studied further. "
"Dr. Burrascano also emphasized the complexity of Lyme disease, particularly chronic disease, and he too recommended an article, a 'very, very important' article by Kenneth Liegner in the Journal of Clinical Microbiology, August 1993, 1961-1963 that deals with the very basic questions that need to be addressed in diagnosing and treating Lyme disease:
He noted that
' At the time of otherwise asymptomatic EM you can find evidence of infection in the central nervous system. The bacteria of Lyme disease ...is not blocked by the blood-brain barrier. It can EVADE host defenses. So that you are set up with a systemic infection. ....even early Lyme disease cannot be taken lightly .especially since the CNS disease can then become latent for long periods, up to 14 years. He sees patients who were not treated early and who present sometimes 14 years later with
Treatment for early Lyme disease has to be designed to penetrate the CNS, even if it is an asymptomatic person with EM, '
'The best correlation of this with other illnesses, of course, is syphilis, and we all know about the TUSKEGEE STUDY WHERE SYPHILIS WAS PURPOSELY NOT TREATED to see what would happen. Patients who are not treated or who are given minimal treatment may go on to progress.'
'The bottom line is not just how does the patient feel next week, or does the treatment make the patient feel well, or is the joint better? The better question is:
I basically recommend that until we have more technology to tell whether the patient is infectious, they be followed for life."
- Is the whole person better?
- How long do we follow these people?
- For a month?
- Three months?
- Six months?
"With regard to diagnosis, Dr. Burrascano emphasized that serologies are not reliable, and that several groups have been able to culture Borrelia burgdorferi spirochetes in the CSF of patients who had negative serologies both on blood and CSF. Lyme disease is not diagnosed with a blood test; it is diagnosed with the whole clinical picture, the background of the patient, the exposures, the symptoms, the evolution of symptoms over time, ....taking the whole picture into account.' "He warned that in his opinion it is the patients who are much more ill who remain seronegative or only weakly seropositive for years ......His experience suggests that these patients also in general respond much more poorly to therapy, and he is concerned that they are not studied at all by groups which limit their patient poplulation to CDC-defined cases of Lyme disease, which require seropositivity.
"Dr. Burrascano noted that there is controversy related to how long someone is supposed to be treated. Articles often state that treatment should consist of two to three or sometimes four weeks of antibiotics, but he asserted that this is an arbitrary time period, that...'Never in the entire history of this illness has there ever been a single study that has proven by any scientific method whatsoever that x number of weeks was enough to kill the spirochete. If you look at the the science of this, there are many studies of failures of four weeks or less of treatment, proven by positive antigen capture and culture and so forth.'
He said that this is particularly true for late stage Lyme. He stated that if treatment is stopped when patients are still sick, they are still going to be sick, and that the hard part for the clinician to decide is when the patient is over the active infection.' There is no test for a cure, ' he said, 'and there probably will not be one, because of the nature of the beast. So what you have to try to do is discover, from close work with the patient, what the symptoms are that are indicative of an ongoing, active infection, as opposed to some permanent damage or autoimmune phenomena that may or may not be occurring .'For example,
Dr. Burrascano finds that if patients have such signs, and treatment is stopped,
- 'some ongoing low grade fevers or night sweats,
- with the low-grade fevers often occurring in the late afternoon at about 4 o'clock, are a sign if you exclude other sources of fever.
- Patients who have migratory polyarthritis or polyarthralgia, when it's in the elbow for two weeks and then it moves to the knee and it moves to the wrist, something is moving around in there, and that is a sign of ongoing infection.''either they are never going to go completely back to normal, or they will relapse fully after they have been treated, and this is what makes the treatment of Lyme so difficult.'
- Some patients in his practice, he observed, have had Lyme disease for over five years, undiagnosed and untreated, and have had one month of amoxicillin and were absolutely fine, and in five to ten years of followup never have been sick again.
- On the other hand, other patients in his practice have been on antibiotics for more than three years and have been found by objective cultures or by electron microscopy to harbor living spirochetes.
"Dr. Burrascano discussed some of the means by which the spirochete might resist both detection and antibiotic therapy. These include
- dormancy or latency,
- residence within intracellular structures,
- residence within certain organisms of the body which are resistant to both immunologic defenses and antibiotics, and the
- ability of the spirochete, as described by Dr. Dorward, to coat itself with a gel-like substance including immunoglobulins which may well insulate it from detection by the immune system and from the effects of antibiotic drugs.
"With respect to dormancy/latency, he reported a study done in 1991 by McDonald which cultured spirochetes from EM lesions and found that, in the same medium and using the same techniques.
- some spirochetes grew for a month or two,
- some spirochetes did not appear to grow until several more months went by, and
- one culture lay dormant for over 10 months before it started to regrow.
This correlates with observations
and Dr. Burascanno noted that if the laboratory findings hold true in human systems, this is very important in as much as antibiotic therapy kills spirochetes only in their growth phase.
- on latent periods and
- relapses in human symptomatology,
"With respect to intracellular residence, he noted that several different scientists have found the spirochetes
- inside the cells of the body,
- inside fibroblasts and
- inside macrophages.
If spirochetes actually take up residence in these intracellular structures for more than a transient passing through, he observed, then they will be resistant to drugs like cephalosporins, which don't penetrate cells.
He also reported that in New Jersey a well-known opthalmologist in the field of Lyme disease has shown electron micrographs of spirochetes that have been cultured from the inside of the eyes. The eye is well known as an immunologically favored site and can serve as a persistent locus of spirochetes that can keep a person infected, or can reinfect them when antibiotics are stopped....."