There are constant questions about tests on this thread and also complaints and comments about doctors, treatments etc. In order to make the case for the presence of Lyme disease in South Carolina I have submitted the following memorandum to the various officials in South Carolina and it is going to as many doctors as we can think of and anybody else for that matter.
It is technical in nature but if you persist you will find an comprehensive explanation of the present situation with lyme testing, diagnosis and treatment and that will help you understand the difficulties the doctors are facing. What I have written could apply anywhere. Lyme disease is one fiend of a disease, to put it mildly.
Also you will see the errors, confusions and blatant stupidities. I hope this is of value. I believe your preseverence in reading it will be well rewarded. I have sweated blood and pulled hair out of my head, gone nuts and cried writing it. Cheers. Thomas Parkman
Memorandum on Lyme Disease in South Carolina Thomas M. Parkman
1. Lyme disease is present in South Carolina. It is an extremely dangerous, even life-threatening disease. It can attack the heart, brain, neurological system, blood, connective tissues, and just about any other part of the body. A disabling and painful illness, it can cause, among other things, arthritis, disabling fatigue, fibromyalgia, heart disease, depression, severe neurological problems and gastrointestinal problems.1 The causative pathogen of the disease, members of the species Borrelia, is endemic in South Carolina and has been located in birds, rabbits, rodents, ticks and lizards.2,3 While the level of infection among the various vectors is complex and variable, the reservoir small animals in the coastal region of the state have presented a level of infection comparable to the endemic areas in the Northeast.4
2. Lyme disease is a complex clinical entity. There is, as Steven Phillips et al., noted in a November 2005 issue of the ``Lancet'' ``a growing problem with Lyme disease: while what is known about the basic science of this tick-borne illness becomes more complex, the clinical science remains relatively simplistic and uninformed. This divergence has produced a disconnection between the recognition of B burgdorferi as one of the most invasive and elusive bacteria known to man, and the clinical perception that Lyme disease is `hard to catch and easy to cure'.... Although this might be true of promptly treated acute B burgdorferi infection, chronic infection that allows the spirochaete's pathophysiological mechanisms to unfold can result in tenacious tissue invasion that is extremely difficult to eradicate.''5 Lyme disease simply does not behave like other ``normal'' bacterial diseases, which is why the medical professions have been so challenged by it. Given the debilitating effects of this disease, however, a prompt and accurate diagnosis is critical.
3. The extent of the epidemic in South Carolina is unknown. In their MMWR report of May 7, 2004, the Centers for Disease Control state: "Surveillance for LD is subject to several limitations. Studies from the early 1990s suggested that LD cases were underreported by six to 12-fold in some areas where LD is endemic; the current degree of underreporting for national data is unknown. In addition, differences in the demographics of reported cases among states with above- and below-average incidence suggest variation in diagnostic and reporting practices among states. Clinicians are reminded that the LD case definition was developed for surveillance purposes and might not be appropriate for clinical management of individual patients."6 Two specialists in Lyme disease practicing outside of the state have informed this writer that they are currently treating in excess of two hundred patients from South Carolina for Lyme disease.
4. Current serological testing for Lyme disease is subject to serious limitations.7,8 As stated above the CDC has established case definitions and a two-tiered testing approach for reporting active disease and previous infection. It was intended for surveillance of health events in populations. Such definitions require uniformity, simplicity, clarity and brevity. There is no pretense of 100% specificity or 100% sensitivity.9 Unfortunately these definitions and protocols have become the standard for Lyme disease diagnosis, a purpose for which they were never intended.7
5. The result has been a situation which cannot in any way be described as uniform, simple or clear. As a screening test the ELISA test is inadequate.8,10 The causative agents of this disease are highly variable organisms,3 with many different immune evasion mechanisms and evasion strategies similar to those used by the mycobacterial agents that cause chronic infections such as leprosy or tuberculosis.5 As a result antibody response in patients fluctuates over time.8,11 Thus in Western Blot testing, serial testing of the same patient can exhibit significant variations in results3,8,11 as is characteristic of the variability observed in the immune response of other diseases7,8 or may never present positive results even when the patient is actually infected with the causative pathogen.11,12 If false results are to be feared, obviously it is the false negative result which holds the greatest peril for the patient.
6. The bacterium itself expresses proteins differently in vivo from in vitro.13 This means that the same strain of bacterium cultivated in vitro and used to provide the antigen base for the Western Blot test may express proteins differently in the living patient and thus may not even appear on the test even though the patient is actually positive for the disease. A further difficulty arises in the matching of the protein bands in the Western Blot due to the probable use of different strains of B. burgdorferi as the antigen source.11 Thus there are a number of serious limitations, such as the lack of sensitivity, specificity and significant variability of serological assays used for detection of B. burgdorferi antigens not only between laboratories but within individual laboratories themselves.14
7. These difficulties in serological testing are greatly compounded by the fact of the broad and complex genetic heterogeneity of the known pathogen, a complex of genospecies known as Borrelia burgdorferi sensu lato. This heterogeneity presents a confounding problem for the serologic diagnosis of Lyme disease.13 One study of this genetic heterogeneity in the southeastern United States identified 56 strains of B. burgdorferi broken into three genospecies, along with two hitherto unknown probable genospecies and a number of variant strains. The serological responses in patients with Lyme disease or Lyme-disease like disease were found to be variable and sometimes unpredictable with, on occasion, no response at all. The authors suggest that the genospecies B. burgdorferi sensu stricto causes some Lyme disease cases in the southern United States but that a significant number of cases of Lyme disease or a Lyme-disease like disease is caused by alternative Borrelia species or some novel uncharacterized infectious agent.3 The discovery in recent years of ``southern tick-associated rash illness'' (STARI) and of the putative agent,15 a new species of Borrelia, tentatively named Borrelia lonestari,16 would appear to confirm this hypothesis. The vector, Amblyomma americanum, (ie. the Lone Star tick) has been shown to parasitize human beings from all sections of South Carolina and Georgia, as has the vector for B. burgdorferi, Ixodes scapularis (ie. the Deer tick).17,4
8. Kerry L. Clark of the College of Health in the University of North Florida in a private communication to the writer has noted : ``I suspect that there is a very diverse array of Borrelia species present in the southeastern US, with strains representing relapsing fever group species, Lyme group species, and other as-yet-undefined Borrelia groups, and genetically variable strains that fall within these diverse groups based on evolutionary divergence. It may be that we should stop looking specifically for Lyme Borrelia or relapsing fever group Borrelia in human patients, and look for just Borrelia species period. The European literature is more ripe with papers describing Borrelia species strains that fall between Lyme and RFG species. I believe it is at least possible that much of the Lyme-like illness in humans in this region of the US may be due to an altogether different Borrelia species that is like Lyme Borrelia species in some ways, and like RFG species in some ways, and altogether different from either in some ways. This group may be a more ancient ancestor of both Lyme and RFG species....This hypothesis is the only one that explains all of the strange human disease manifestations and test result ambiguities.'' Given the fact that there is limited or no testing for these variant forms, whole strains of the causative pathogen may well be overlooked.
9. The International Lyme and Associated Diseases Society in its position paper has stated that the CDC two-tiered protocol may miss between 40 and 50 percent of actual cases of Lyme disease. Lyme disease is a problematic diagnosis. The misunderstanding and misuse of this surveillance protocol and the positions adopted by the CDC which have oversimplified a complicated clinical condition, have, unfortunately, had the unintended consequence of compounding an already difficult problem.8
10. The Centers for Disease Control have repeatedly stated the Lyme disease is a clinical diagnosis. One does not see what one does not look for. Doctors have been told or seem to believe that there is no Lyme disease in South Carolina. Thus they do not report the disease as they are not looking for it. The public health authorities then report on the basis of what the members of the medical profession have told them. The result has been the creation of a vicious cycle in which patients infected with a dangerous pathogen are not diagnosed or misdiagnosed and do not receive the medical care they urgently need. They remain sick, suffer terribly and their health continues to deteriorate. Hundreds then have gone out of state to receive medical diagnosis and care that they cannot get here.
11. Lyme disease can cause immense and unnecessary suffering and if not diagnosed in time can be incurable. It can even result in death.1 In addition the economic costs resulting from lack of diagnosis and proper care and treatment are very great. Thus it becomes extremely important that members of the medical profession learn to recognize the disease, diagnose it and give it adequate treatment in the earliest stages of the disease as possible.
References:
1. Lyme Disease Symptoms and Characteristics: A compilation of peer-reviewed literature reports. September, 2005. Lyme info. www.lymeinfo.net. 2. Clark, Kerry, et al. 2005. Molecular Identification and Analysis of Borrelia Burgdorferi Sensu Lato in Lizards in the Southeastern United States. Applied and Environmental Microbiology. 71, no. 5, p. 2616-2625. 3. Lin, T. et al. 2001. Genetic Heterogeneity of Borrelia burgdorferi Sensu Lato in the Southern United States Based on Restriction Fragment Length Polymorphism and Sequence Analysis. Journal of Clinical Microbiology. 39, no. 7, p. 2500-2507 4. Clark, Kerry, et al. 2002. Prevalence of Borrelia burgdorferi Sensu Lato Infection Among Rodents and Host-Seeking Ticks in South Carolina. J. Med. Entomol. 39 (1), 198-206. 5. Phillips, Steven E., et al. 2005. Lyme disease: scratching the surface. The Lancet 366: 9499 (Nov. 19, 2005): p1771. 6. Centers for Disease Control. 2004. MMWR-Weekly. Lyme Disease--United States, 2001-2002. May 7, 2004/ 53 (17); 365-369. 7. Harris, Nick S. 1998. An Understanding of Laboratory Testing for Lyme Diasease. Journal of Spirochetal and Tick-borne Diseases. Vol. 5, Spring/Summer p. 16-26. 8. International Lyme Disease and Associated Diseases Society. 1999. ILADS' Position Paper on the CDC's Statement Regarding Lyme Diagnosis. 9. Melski, John W. Language, Logic, and Lyme Disease. Archives of Dermatology. 135, no. 11, 1398-1400. 10. Bakken, Lori L., et al. March, 1997. Interlaboratory Comparison of Test Results for Detection of Lyme Disease by 516 Participants in the Wisconsin State Laboratory of Hygiene /College of American Pathologists Proficiency Testing Program. Journal of Clinical Microbiology. 35, no. 3: pp. 537-543. 11. Engstrom, Suzanne M., et al. 1995. Immunoblot Interpretation Criteria for Serodiagnosis of Early Lyme Disease. Journal of Clinical Microbiology. 33, no. 2, p. 419-427. 12. Felz, Michael, W. et al. 1999. Solitary Erythema Migrans in Georgia and South Carolina. Arch Dermatol. 135: 1317-1326. 13. Goettner, Gereon, et. al. 2005. Improvement of Lyme Borreliosis Serodiagnosis by a Newly Developed Recombinant Immunoglobulin G (IgG) and IgM Line Immunoblot Assay and Addition of VlsE and DbpA Homologues. Journal of Clinical Microbiology. 43, no. 8, p. 3602-3609. 14. Cyr, T. L. et al. 2005. Improving the specificity of 16S rDNA polymerase chain reaction for detecting Borrelia burgdorferi sensu latu-causative agents of human Lyme disease. Journal of Applied Microbiology. 98, 962-970. 15. Moore, Victor A., et al., 2003. Detection of Borrelia lonestari, Putative Agent of Southern Tick-Associated Rash Illness, in White-Tailed Deer (Odocoileus virginianus) from the Southeastern United States. Journal of Clinical Microbiology. 41. 1, 424-427. 16. Varela, Andrea S., et al. 2004. First Culture Isolation of Borrelia lonestari, Putative Agent of Southern Tick-Associated Rash Illness. Journal of Clinical Microbiology. 42. 3, 1163-1169. 17. Felz, Michael W., et. al. 1996. Ticks Parasitizing Humans in Georgia and South Carolina. Journal of Parasitology. 82. 3, 505-508.
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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posted
Wow! let's hope that gets some ACTION! Really a great job, Thomas!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Bravo, Thomas Parkman!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Really wonderful job with this, Thomas!
Posts: 2549 | From never never land | Registered: May 2005
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posted
Hi Thomas, This is a really eloquent description of the way things are, thank you for writing one of the best things I've seen. It's so up-to-date, and will apply to us in the UK just as much as in Colorado, except for the lizards! and we have something called EUCALB, instead of the CDC. Best wishes, Andromeda
Posts: 180 | From UK | Registered: Nov 2005
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Thank you for your kind words. The discouraging part about all of this is that one doctor to whom I have sent the memo here in SC has said it is too long and that it does not present any guidelines about what the doctors are suppposed to do. I suppose next, I (underlined) will be writing guidelines telling doctors how to treat Lyme disease?????????!!!!!!
How ridiculous can you get? The other sad part about it was he said that the doctors would never read it. That is the problem. Lyme disease requires effort to understand it. The doctors are too lazy to make the effort and of course there is no immediate money in learning something new and as complicated as Lyme Disease, now is there? Lovely.
So the real problem in Lyme disease is inertia, laziness and ignorance. How you combat that is beyond me. Cheers. ???????? Thomas Parkman
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
You have put much time and effort into what you wrote. I commend you for it.
I have found that the best way to educate doctors so far is one on one. As I see them either personally or as I take a friend or family member to the doctor....I will mention lyme to them.
I always take with me an article or two on lyme, and the Patient's Issue of Lyme times. I explain my story to them simply. Let them know which ONE article would most benefit them to read to get acquainted with lyme, and leave it at that.
They have always been most appreciative.
And my PCP now has lyme on her radar screen. Just yesterday, I learned that she had told someone that lyme was a probable cause of her ill health.
It takes time, but one on one seems to work pretty darn well.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Very professional and well-referenced paper, Thomas - thanks SO much for putting your abilities to use on behalf of all of us. This is really a wonderful piece of work.
This memorandum is so well-written - perhaps your local or regional newspaper would be interested in publishing it, even if they did it in 2 or more "parts"?
Even small newspapers often have health sections. I would think that this would be of interest to many readers since it is written by a "local" writer. And who knows...... it might get picked up by a larger newspaper in your state, too.
Have you considered this?
I would love to see your message go out to the general public, as well as officials and doctors.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Great Job Thomas
Even if just a handful of doctors read and and understand your paper, the ramafications could save many people.
I know your frustration here in SC. My own GP gives my the hand and is always saying" I don't know " and I honestly believe He doesn't want to know.
I can't for the life of me understand this thinking. Other than they don't want to go down the slippery slope with the insurance/medical boards?
Thanks again for your work. I really think one day the doctors will wake up and it is going to take someone as articuate as you to convince them.
Take care dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Hi Thomas, Sorry I wrote Colorado instead of Carolina in my last post! Wherever we are though, we all have to fight the denial that keeps so many people ill, and stops the public being warned. I'll give a copy of your article to my family doctor, and copy it onto my email groups. Thanks so much. Best wishes, Andromeda
Posts: 180 | From UK | Registered: Nov 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thank you for doing this.
you don't have to write the tx part-just attach dr b's or ilads
maybe a cover sheet w/pts 1-11...a short sentence or phrase each-to get their attention
i don't mean to give you more work-it's just too good to have the docs NOT read it...
i'll try to summarize each pt later...maybe...if i can (or maybe someone else can jump in)
this is a real important piece-we shouldn't let it get lost...it needs to be out there
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
To the top for those who may not have seen it. I consider it a "must read!" for everyone.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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