Boston Globe Article about Diagnosing Chronic Lyme Disease

Boston Globe Article about Diagnosing Chronic Lyme Disease

If you have not read the article in Sunday’s Boston Globe (10/20/2013), please read it now:

I was honored to be interviewed and selected for inclusion in the article in spite of the fact that the journalist and I “agreed to disagree” regarding the validity of Advanced Labs test, and her insistence that there was intentional deceit involved in the promotion of the test.

Ms. Daley asserted her desire to be intellectually honest and yet she chose to rely on a derogatory letter written by a New York investigator over the process of the test itself. (For those of you who believe in a conspiracy theory, or that the media is internally biased, I did not find this to be the case whatsoever, Ms. Daley is a conscientious and courageous journalist.)

Having just completed my first draft of “Scientific Evidence of Chronic Lyme Disease (click here to reserve your copy of the ebook which will be released next month), I feel qualified to evaluate the various difficulties in proving the existence of chronic Lyme, and the desperate need for a reliable diagnostic test.  My ebook is close to 100 pages and includes almost as many excerpts from published research papers. What amazed me as I dove into this project is how long the evidence has existed – the first report I cite was published 1977!

However, even with the dozens and dozens of peer-reviewed medical research papers that show not only the existence of chronic Lyme but the mechanics of why Borrelia becomes chronic, the medical establishment continues to ignore the mounting evidence (from research and the patients they have vowed to treat), and they ignore the growing number of people who have a recurrence of symptoms after being treated according to the IDSA guidelines; many who recover for a week or even a month and then denied further treatment when symptoms return, why keep their collective heads in the sand?

I was relieved to find a thinking person (Ms. Daley) who can look at the evidence, and see at least the most basic truth in this raging medical controversy, that chronic Lyme does in fact exist – in spite of what the IDSA says or anyone else.

However, when I discussed the test process with Ms. Daley, and explained why I believe in the validity of the test she declined to look at my viewpoint objectively stating that she chooses science over faith. I respect that idealistic view, however, if you really think about it, all medical practice boils down to faith.  

Doctors have faith in their teachers at medical school and the guidelines issued by the governing board of their medical specialty.  Patients have faith in their doctors even when they are often wrong as proven by billions of dollars awarded in malpractice suits over the years, and the frequent practice of second opinions (lack of faith.)  

Doctors used leeches to “blood” sick patients for hundreds of years believing their methods to be scientifically based.  On the other hand, imagine a medical board insisting that there is no such thing as bubonic plague during the epidemic in the fourteenth century because testing could not confirm the illness at that time.  It is laughable because obviously people were dying everywhere (scientists estimate that one third of the human population was killed during that plague.)

Before this test became available, the following quote summed up the state of Lyme diagnostics in America:

“…(The Western blot for Lyme is so flawed that even its major manufacturer says he has found numerous “band” patterns more accurate than the one in use today.) Instead of relying on flawed 20th century technology, we must look to the science of the twenty-first century, including state-of-the-art genomics and proteomics that allows for the sequencing of every gene and protein involved in every stage of Lyme. With evidence of this calibre we won’t have to fight over the truth: We will know what’s going on.  –  from Disappearing a disease: when guidelines lack balance, patients suffer by Pamela Weintraub;  Psychology Today website blog-Emerging Diseases, February 5, 2009 

Major complaints regarding Advanced Lab Services Borrelia blood culture are validation and contamination.

How the test works: Your doctor or nurse technician pulls numerous vials of blood at a predetermined time to get the blood to the lab by a certain time to be handled promptly and carefully.  At this point unless the needle your doctor used is contaminated with Borrelia, there is no way for the test to be “contaminated.

Then your blood is placed in a number of petri dishes to culture the blood. Technicians use sterile gloves (and as we all know Borrelia is not airborne), and the waiting begins. The building where the lab is located may be old, but Borrelia is notoriously hard to grow in labs, and certainly just because a building is old or even dirty does not mean that there are spirochetes lurking in dust bunnies or peeling paint.

Advanced Lab Services prides themselves on using the highest standard of excellence in handling blood samples.  The big difference with this test is the length of time the lab waits for their culture to grow spirochetes AND the verification process.

If the culture grows Borrelia bacteria (as mine did after 16 weeks), it clearly shows due to immunostaining.  Then PCR and DNA tests are performed. 

Most people do not know that teams of researchers at Stony Brook University Medical Center have spent years mapping the DNA genome sequences of over a dozen species of Borrelia for the very purpose of positive diagnosis and the possibility of developing an effective vaccine

To understand the incredible achievement this represents , and how reliable DNA verification is, consider the following (compiled by from MibrobeWiki.) 

“B. burgdorferi has a very unique genome. It consists of one large linear chromosome that is 910,725 base pairs long. This chromosome contains approximately 853 genes coding for basic functions such as DNA replication, transcription, translation as well as transport and metabolic systems. However, in addition to this chromosome, the bacterium also contains 21 other linear and circular plasmids that add an additional 533,000 base pairs of DNA. The genomic organization of B. burgdorferi is unique due to the high number of plasmids.”

And just days ago, on October 10th, 2013 the following research paper was published by BMC Genomics (read here) called:

“Inter- and intra-specific pan-genome of Borrelia burgdorferi sensu lato: genome stability and adaptive radiation” 

COLLABORATION: Emmanuel F Mongodin, Sherwood R Casjens, John F Bruno, Yun Xu,Elliott Franco Drabek, David R Riley, Brandi L Cantarel, Pedro E Pagan,Yozen A Hernandez, Levy C Vargas, John J Dunn, Steven E Schutzer,Claire M Fraser, Wei-Gang Qiu and Benjamin J Luft

The entire report is fascinating to read, but for the purpose of this post, I quote the following: 

“… Yet gene-acquisition rates in B. burgdorferi s.l. are among the lowest in bacterial pathogens, resulting in high genome stability and few lineage-specific genes…”

This shows the stability of using DNA to identify a great variety of Borrelia strains (as is done in the Advanced Lab Services test), and yet another reason that has been long suspected (the quickly morphing species of Borrelia) to get a reliable diagnostic test which the Advanced Lab Services test has shown to be 94% accurate based on comparing CDC positive samples to their own positive results on the same samples. (One of the comparisons the Lab was criticised for NOT doing – they actually are in the process of enlarging the study that has already done a comparison of a significant number of CDC positive test results.)

I would say that 94% is far better than the 40% or lower percentage of reliable results that come from the 2-tier testing!

Advanced Lab Services is not given any credit for forging ahead to get the very specific verification that is being requested of them in spite of the fact that DNA itself is a very strong verification method on its own.

Here is a refresher on DNA science  taken from Wikipedia:

Deoxyribonucleic acid (DNA) is a molecule that encodes the genetic instructions used in the development and functioning of all known living organisms and many viruses. DNA is a nucleic acid; alongside proteins and carbohydrates, nucleic acids compose the three major macromolecules essential for all known forms of life.

DNA is well-suited for biological information storage, since the DNA backbone is resistant to cleavage and the double-stranded structure provides the molecule with a built-in duplicate of the encoded information.

Genomic DNA is tightly and orderly packed in the process called DNA condensation to fit the small available volumes of the cell. In eukaryotes, DNA is located in the cell nucleus, as well as small amounts in mitochondria and chloroplasts. In prokaryotes, the DNA is held within an irregularly shaped body in the cytoplasm called the nucleoid.

The genetic information in a genome is held within genes, and the complete set of this information in an organism is called its genotype. A gene is a unit of heredity and is a region of DNA that influences a particular characteristic in an organism. Genes contain an open reading frame that can be transcribed, as well as regulatory sequences such as promoters and enhancers, which control the transcription of the open reading frame.

A gene is a sequence of DNA that contains genetic information and can influence the phenotype of an organism. Within a gene, the sequence of bases along a DNA strand defines a messenger RNA sequence, which then defines one or more protein sequences. The relationship between the nucleotide sequences of genes and the amino-acid sequences of proteins is determined by the rules of translation, known collectively as the genetic code. 

The development of forensic science, and the ability to now obtain genetic matching on minute samples of blood, skin, saliva or hair has led to a re-examination of a number of cases. Evidence can now be uncovered that was not scientifically possible at the time of the original examination. This is called “genetic fingerprinting” or “DNA profiling”

[So DNA can put a person in prison but it can’t get insurance companies to pay for treatment for a disease that is diagnosed by DNA samples.]

You may not know this, but chronic syphilis was disputed prior to the discovery of penicillin.  The medical community was divided in a collision of egos, differing opinions and contradictory patient responses.  This will be further discussed in another blog post about the numerous comparisons of the biologically related pathogens, and the happy ending we all wish for those of us suffering right now from chronic Lyme.

By the way, Beth Daley, the journalist of the Boston Globe article agrees that if this test is “properly validated” that it will be front page news.  So lets keep watching because its only a matter of time that “genetic fingerprinting” will be conceded to be validation in and of itself.

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4 Responses to Boston Globe Article about Diagnosing Chronic Lyme Disease

  1. Pingback: Boston Globe and the Diagnosis of Chronic Lyme | TICKTalkLyme

  2. don mau says:

    It’s not the Borrielia that is the real problem it is the Bartonella and its ability to create tumors inside people that sequester pathogens. Biofilms are a very minor problem in comparison.

  3. Having reazd this I thought itt was very informative. I appreciate
    you taking thee time and energy to put this article together.

    I once again find myself spending a significant amiunt of time
    both reading and posting comments. Buut so what, it was
    still worthwhile!

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