Topic: Lyme Disease Concerns: A Ticking Health Time Bomb
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
This article is in The Aegis newspaper, Friday January 13, 2006 (Harford County, Maryland).
If you can, please email or call the paper and thank them for publishing it. Anytime we respond with positive feed back, the more they will continue to publish articles the public wants to see. As you know, not many papers are Lyme friendly, so keeping the doors open to the ones who will help us, is always a good idea.
Harford County has one of the highest rates of Lyme disease in the state. The bad news is- a new study from Johns Hopkins confirms Lyme disease tests are "unreliable". The other bad news- the guidelines that recommend treatment for patients with Lyme are, at best, inadequate and have, for years, been based on studies that depended on blood test results.
The Hopkins study determined "no single test, including culture from plasma [blood] or skin, achieves a high rate of diagnostic sensitivity." They also noted that a high level of confidence is still "not obtainable" even when using combinations of various tests.
They feel in certain circumstances people should be treated for Lyme, positive test or not. "When the typical or classical clinical presentation and exposure are evident", Hopkins determined, "it is usually appropriate to treat patients, since additional laboratory testing does not improve the posttest probability of infection." Bypassing the unreliable tests in the early stages of Lyme disease will reduce medical costs and encourage prompt treatment of the infection before it advances to the later stages.
The methods Hopkins used when testing samples from patients in Maryland and lower Pennsylvania were based on procedures used by members of the Infectious Disease Society of America (IDSA). This same group of infectious disease doctors (Wormser, et al) also developed Lyme disease treatment guidelines which have been utilized by physicians and insurance companies across the country. To the detriment of many patients and their families, the guidelines were based on studies that depended on Lyme testing methods currently deemed "unreliable". The guidelines do not address the fact spirochetal infection can be responsible for chronic Lyme disease, which Steere, et al reported was the likely reason for relapse after antibiotic treatment.
At the same time they placed a great deal of focus on "cost-effective" treatments which actually reduced available treatment options rather than allowing patients and physicians to determine the best course of action. The good news is- the IDSA guidelines, published in 2000 are, by their own standards, outdated and should not be used.
A growing number of physicians and patients have adopted the up-to-date evidence based diagnostic and treatment guidelines provided by the International Lyme and Associated Diseases Society (ILADS) which, unlike the IDSA guidelines, includes treatment recommendations for tick borne co-infections found in Maryland, additional diagnostic aids, and recommendations for addressing chronic Lyme disease. According to ILADS physicians, "laboratory testing is meant to contribute to rather than to supersede physicians' judgment". They also contend, "duration of therapy should be guided by clinical response rather than any arbitrary 30-day treatment course".
Unfortunately, physicians dependence on Lyme test results and adherence to the subsequent IDSA treatment guidelines have contributed to people receiving an incorrect diagnosis and/or improper treatment for their condition. Hopkins study warns, "Months after infection, untreated patients can develop chronic major manifestations." Lyme disease has been misdiagnosed as Multiple Sclerosis, Alzheimer's, Parkinson's, Lou Gehrigs (ALS), Guillian-Barre Syndrome, connective tissue disease, hepatitis, cardiac problems, Fibromyalgia, ADD, ADHD, Lupus, depression, candidiasis, mononucleosis, viral illnesses, hypoglycemia, stress-related illnesses, anorexia, anxiety and arthritis, to name a few.
Patients whose lives have been forever altered by physicians and insurance companies using these tests and guidelines can not be compensated for what they have lost. One frustrated patient, after being refused treatment by a number of Maryland doctors and becoming totally disabled from Lyme disease stated, "For years I was told by infectious disease doctors, neurologists, rheumatologists and other doctors that I did not have Lyme disease and I did not need antibiotics. They were dead wrong! A proper diagnosis and long term antibiotics saved my life. Without the help from the ILADS doctors my tombstone would have simply said... I TOLD YOU I WAS SICK!"
posted
Thanks for posting this, Melanie. I read it this morning. I live in Bel Air, Maryland.
I hope that a lot of doctors around here read it, too. I had a hard time with the numerous docs I saw when I was trying to convince them that I had Lyme. They rely so heavily on the rash, joint paint, and the Elisa test and nothing else.
So many people around here are contracting Lyme. The support group is getting larger and larger.
Cinder Posts: 60 | From USA | Registered: Nov 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
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Hi Cinder,
You are most welcome.
I'm sorry that you had such a difficult time finding doctors to properly diagnose your condition. This is exactly why it is so important to keep accurate TBD information in the public eye.
Hope you are feeling better soon. My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
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thanks Melanie for psoting this article.
Right on the mark.
I will write a letter thanking them.When someone gets the facts right they should be congraduated for doing the research & getting it right.
Thanks
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Melanie, Do you have a link or reference( date & jounal)for this new John Hopkins study?
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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NP40
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Member # 6711
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Great article !
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
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Johns Hopkins Re-affirms Lyme as a Clinical Diagnosis - Accuracy numbers confusing J Clin Microbiol. 2005 Oct;43(10):5080-4.
Two-Year Evaluation of Borrelia burgdorferi Culture and Supplemental Tests for Definitive Diagnosis of Lyme Disease.
Division of Medical Microbiology, Department of Pathology, The Johns Hopkins University School of Medicine, 720 Rutland Avenue, Ross 624, Baltimore, MD 21205.
Lyme disease is usually diagnosed and treated based on clinical manifestations. However, laboratory testing is useful for patients with confusing presentations and for validation of disease in clinical studies. Although cultivation of Borrelia burgdorferi is definitive, prior investigations have shown that no single test is optimal for Lyme disease diagnosis. We applied high-volume blood culture, skin biopsy culture, PCR, and serodiagnosis to a cohort of patients with suspected Lyme disease acquired in Maryland and southern Pennsylvania. The study was performed to confirm the relative utility of culture and to identify laboratory testing algorithms that will supplement clinical diagnosis. Overall, 30 of 86 patients (35%) were culture positive, whereas an additional 15 of 84 (18%) were seropositive only (51% total sero- and culture positive), and PCR on skin biopsy identified 4 additional patients who were neither culture nor seropositive. Among 49 laboratory test-positive patients, the highest sensitivity (100%) for diagnosis was obtained when culture, skin PCR, and serologic tests were used, although serologic testing with skin PCR was almost as sensitive (92%). Plasma PCR was infrequently positive and provided no additional diagnostic value. Although culture is definitive and has a relatively high sensitivity, the results required a mean of 3.5 weeks to recovery.
The combination of acute-phase serology and skin PCR was 75% sensitive, offering a practical and relatively rapid alternative for confirming clinical impression. The full battery of tests could be useful for patients with confusing clinical signs or for providing strong laboratory support for clinical studies of Lyme disease.
PMID: 16207966 [PubMed - in process]
Posts: 7052 | From Colorado | Registered: Mar 2003
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
It is a great article, however I wish they would have documented the study, as Melanie did. Don't know whether that was TC's problem or the editor's.
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