Dispelling the myths by Tom Grier (microbiologist) adapted by Jenny O’Dea
[NB: My notes have been placed inside brackets in italic bold!]
(Full article “Lyme on the Brain” with references can be found at): http://madisonarealymesupportgroup.wordpress.com/2010/08/09/tom-grier-lyme-lecture-outline/
Myth One: Length of Tick Attachment: A tick must be attached for at least 36-48 hours. WOW! How could you ever make that conclusion on the sparse veterinary and human data we have? In fact the data suggests this is not true. Studies that looked at improper removal of a tick showed much shorter attachments are possible.
What happens when a tick attaches?
This is the essence of the pathogenisis of Lyme disease: if you understand this concept of infection, you begin to understand why the conservative viewpoint of Lyme is causing latent morbidity and mortality.
In several mammal studies in the late 1980s, it was shown in many species including dogs that within hours of tick attachment that the Lyme organism is with every beat of the heart circulating through the entire body. The spirochete’s motility allows it to position itself into the cracks and folds of a blood vessel wall. Borrelia burgdorferi has a tropism or an attraction to attach to the endothelial cells lining blood vessels. Once the bacteria has attached it traps tissue plasminogen that converts to plasmin and this begins the process of inflammation.
The net result is within 24-48 hours we can measure the breakdown of the blood-brain- barrier in dogs that peaks at 48 hours and lasts for up to 14 days! So are we really going to say that a tick has to be attached 48 hours? This animal model suggests that the infection is potentially already established within the brain. This study was done by tagging normal blood albumin with radioactive Iodine and tracking it into the CSF of the dogs. (1989 Immunological Methods of Borreliosis Cold Spring Harbor)
Why is there such an absolute dictatorship in our guidelines when we have direct animal studies since 1989 that suggest that not only does Borrelia bacteria penetrate blood vessels and enter the brain, but once the blood-brain-barrier closes up 10-14 days after initial infection; the sequestered bacterial infection within the brain is undetectable by serology tests.
Myth Two: Elisa & Western Blot Tests are the gold standard for testing Lyme Disease
Short-comings of the current antibody based Lyme serology tests:
To create these tests we need a representative source of the wild bacteria as a source for specific antigens that can be used to detect the specific antibodies that patients produce as a result of an infection from their local area.
Since Borrelia bacteria are genetically equipped to change their antigenic appearance (strain variation) it is important to use tests that are designed using the best representation of the bacteria that is found in the local area. There can be tremendous variation in Borrelia isolates even those found within close proximity to each other. There are well over 1000 Borrelia isolates of Borrelia burgdorferi that are strain variations in the USA alone. This is not even counting the greater variation that we see if we look at other related geno-species such as Borrelia lonestarrii in Missouri, or Relapsing Fever Borrelia in the SW USA, or the genospecies Borrelia garinii and Borrelia afzelii found in Europe, or the dozens of other related bacteria in the world that cause Lyme-like or Relapsing-Fever-Like diseases caused by various variant strains of Borrelia bacteria.
[Benjamin Luft, M.D., Professor of Medicine, Stony Brook University Medical Center, and a team of medical researchers have determined the genetic blueprint of 13 strains of the bacteria that cause Lyme disease. Dr. Luft and colleagues point out in the study that improved diagnostics are needed because the best clinical sign of Lyme disease, the erythema migrans skin rash, does not always occur in patients. In addition, diagnostic assays and vaccines developed before their blueprint of the entire genome of B. burdorferi have had less than satisfactory results. http://www.physorg.com/news/2010-10-genetic-blueprint-bacteria-lyme-disease.html]
Once you see this global picture you can never look at Lyme as an isolated disease ever again. It is part of a global-pandemic called Borreliosis. But the tests that have been chosen for us, and dictated that we use are not based on any Borrelia found in nature! Why? Since Borrelia identity changes quickly by inserting variant plasmid genes into its larger linear chromosome, the bacteria will always have built in variation unless you eliminate plasmids. (Borrelia burgdorferi has about 31 circular or linear plasmid-chromosomes that facilitate genetic variation, it is estimated that over 60 genes can insert in at least three different chromosome loci resulting in over sixty to the 3rd power variations in the bacteria or potentially over 200,000 possible variations that could be predicted based on what we currently know.) This creates an economic and practical dilemma for manufactures of Lyme serology tests who want consistency and reproducibility without the expense of isolating local bacteria from local ticks and growing them in the lab which is very difficult, time consuming, inconsistent and expensive. For this reason manufacturers use a strain that was developed in a lab that resists variation.
Strain B-31 that was originally isolated from the NE USA ticks, and was created through high-passage selection until it remained consistent from division to division.
B-31 is never found in nature, and when B-31 tests were compared and tested by independent researchers in Madison WI, France, Austria, and United Kingdom, B-31 had short comings and never had the essential antibody detection that the tests developed from local wild-strains produced. One can make an argument for B-31 consistency, but never for its local strain selectivity.
What makes this discussion about what strain we use to make Lyme serology tests completely moot; is the one fact that we completely ignore in the United States:
Once Borrelia bacteria breach the brain’s defenses, absolutely no Lyme serology test short of an autopsy can rule out infection within the human brain!
The nearly arbitrary decision to eliminate species specific antibody-bands from the reporting of the Western Blot tests definitely made the Western-Blot test less accurate. This change in accuracy did not come about from changing the actual test but rather by enforcing a reporting-bureaucracy that made the test less sensitive. Make no mistake the labs that do this test still see the positive bands that are banned from reporting, but are legally unable to report them. Then to further cloud the already muddy waters of accuracy it was decided that all laboratories across the USA have to report all Western Blots as either positive or negative and not report the essential bands.
Not reporting significant Western Blot Band is to a scientist, tantamount to saying: There are no contaminates in your drinking water, so please don’t waste your time testing the well water, and if you do test the waters and find something that we haven’t reported, we have already deemed that the contaminates are unimportant and benign.
Well the contaminates (bands 31, and 34) aren’t as benign as we are told. Let’s look at the old Western Blot reporting criteria on 66 kids with a tick-bite and bull’s-eye rash compared with the new reporting criteria. This is the same test and same patients, but we are now using the Dearborn MI “Dressler” criteria for Western Blot reporting.
Western Blot and False Negatives in Children:
1995 Rheumatology Symposia Abstract # 1254 Dr. Paul Fawcett et al. This abstract showed that under the old criteria, all of 66 pediatric patients with a history of a tick bite and, Bull’s Eye rash who were symptomatic, were accepted as positive under the old Western Blot interpretation. Under the newly proposed criteria only 20 were now considered positive. That means 46 children who were all symptomatic, would probably under the previously mention YALE Criteria be denied treatment! That’s a success rate of only 31 %.
[The Elisa test which is used as a 1st tier test (meaning do not use Western Blot unless Elisa is positive) can also be hit & miss: Department of Microbiology and Immunology, Pomeranian Medical University, Poland:The serological tests for borrelia routinely done in laboratories often produce ambiguous results, which makes a proper diagnosis rather complicated and thus delays the implementation of an appropriate treatment regimen. Thirty-seven outpatients and eight inpatients with suspected borreliosis diagnosis hospitalized at the Clinics of the Pomeranian Medical University (Szczecin, Poland), participated in the study. In order to detect the antibodies against Borrelia sensu lato three kinds of serological tests were used: indirect immunofluorescence assay (IIFA), enzyme-linked immunosorbent assay (ELISA), and immunoblot. The IIFA and immunoblot tests conducted on 45 patients (100%) produced positive results for both the IgM and IgG antibody types. In the case of ELISA, positive or borderline results were observed in only 24 patients. (53.3%). Therefore using only ELISA as a screening test or for diagnosing Lyme borreliosis seems debatable. http://www.ncbi.nlm.nih.gov/pubmed/21258869]
[Interestingly the Scottish labs recently changed their Western Blot criteria to make it more sensitive: This study reviews the Lyme borreliosis Western blot interpretation process, including what bands are classed as specific, the number of bands needed for a positive result, the role of band intensity and the use of clinical information. New interpretation criteria and a testing algorithm were developed. The revised criteria changed the results in 109/3688 (3%) patients and produced significantly more Western blot-positive and weak-positive patients than with the current criteria (485 vs. 442, P<0.0001). In total, 76 patients who were negative/equivocal became positive, which may have led to a change in their management. http://www.bjbs-online.org/article.asp?id=438]
See http://www.lymeneteurope.org/info/the-complexities-of-lyme-disease for more information on Lyme Testing
Myth Three: Now consider this: Recently a Lyme disease expert stated nationally that there is no evidence of transplacental transfer of active infection from mother to fetus. We have actually observed in culture Borrelia burgdorferi penetrating umbilical vein. We also have nine case histories 1987-1989 that confirmed by either culture or direct tissue staining that in fact Borrelia burgdorferi does cross the placenta, and has caused still-births including infections within the fetal brain. [For references please go to: http://madisonarealymesupportgroup.files.wordpress.com/2010/08/part-5-references-corrected-lyme-on-the-brain-by-tom-grier-9-1-10.docx (word doc) & type in fetal or gestational for more information]
Myth Four: Absolute treatment: Two weeks of doxycycline is adequate despite persisting symptoms: I am curious: Has two weeks of tetracycline ever cured a case of acne??? [For an interesting look at other infections that require long term antibiotic treatment including acne, rosacea, reactive arthritis & crohn’s disease go to: http://www.campother.blogspot.co.uk/2011/05/report-lyme-disease-antibiotics-more.html
How antibiotics work:
In most cases bacterial lethal exposure occurs only during cell division. For a spirochete like Borrelia that is a slow divider (24 hours under good conditions) to get the same lethal exposure during cell-wall synthesis as say treating strep bacteria, you would have to treat for one year and five months. Using the old microbiology formulas for tuberculosis from the 1950s, we would expect both TB and Lyme disease to require in many cases over one year of antibiotics including combination therapy. Well we learned our lesson with Tuberculosis but not yet with Lyme disease.
Spirochetes are masters at morphing and changing forms. It helps them survive or another way of putting it; it contributes to relapses occurring even after aggressive antibiotic therapy.
[Study by Eva Sapi at el: Studies have suggested that resistance and recurrence of Lyme disease might be due to formation of different morphological forms of B. burgdorferi, namely round bodies (cysts) and biofilm-like colonies. Better understanding of the effect of antibiotics on all morphological forms of B. burgdorferi is therefore crucial to provide effective therapy for Lyme disease.http://www.dovepress.com/evaluation-of-in-vitro-antibiotic-susceptibility-of-different-morpholo-peer-reviewed-article-IDR]
Myth Five: Chronic Lyme doesn’t exist –
[for a look into ‘just some’ of the many studies on chronic Lyme please visit: https://ticktalkireland.wordpress.com/2010/07/28/persistence-seronegativity/ ]
The Emperor’s New Clothes, Chronic Lyme Disease, and the Infectious Disease Society of America
Burton A Waisbren Sr. M.D. FACP, Founding Member and Fellow of the Infectious Disease Society of America
This essay will start with a definition of Chronic Lyme disease: Chronic Lyme disease is a syndrome that results when individuals who have been inoculated with multiple microorganisms by infected ticks and who have not responded to an initial course of doxycycline develop extreme fatigue, intermittent fever, joint pain, muscle pain, brain fog, concentration difficulties, skin rashes, and in many instances symptoms of autoimmune disease to the extent that they impinge upon their quality of life.
It’s a conundrum why a group of respected physicians who are members of the Infectious Disease Society of America have not recognized this and have, instead, written a guideline that essentially denies that the syndrome exists. This guideline has resulted in literally hundreds of patients unable to be treated for Chronic Lyme disease.
Sadly Dr Waisbren passed away & the website below has been closed – have kept here for reference only… http://www.waisbrenclinic.com/chronic-lyme-disease-idsa.html
An article on treatment of chronic lyme patients by Waisbren is available at: https://ticktalkireland.wordpress.com/2010/08/03/treatment-of-chronic-lyme-by-founding-idsa-member/
Interestingly if you are a dog you may be lucky in getting sufficient treatment!
[The antibiotics must be given a minimum of 14 days, but 30 days is recommended. However, some preliminary studies show that some animals may not even clear the organism after 30 days and will relapse once the antibiotic is discontinued. In these cases, the animal may have to be on the antibiotic for much longer. http://www.peteducation.com/article.cfm?c=2+1556&aid=458 ]
I’d like to end by presenting a link to poem When will you see me?
Or more important, when will you listen to me.
We humble patients deserve to be tested, treated & taken seriously. Not turned away with false negative Elisa’s, not ridiculed for all our symptoms & told to take anti-depressants for a somatization disorder we don’t have & not be left under-treated for a condition that is far more serious & debilitating than acne. My challenge is can we achieve that?
Let’s hope so!
*Take care this Summer – if you see ticks here in Ireland please complete our survey to help us track them:
*Planning a trip to a national park or forest area this summer? – how about taking the survey to report if Lyme leaflets & notices are being presented, to warn the general public about Lyme disease:
*Do you or someone you know have Lyme & live in Ireland or (live abroad & contracted Lyme in Ireland) then why not fill in our survey regarding symptoms, treatment & testing? (This is completely anonymous to protect your privacy)..