Melanie Reber
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posted
Study finds Lyme disease tests unreliable By STEVE NERY Staff Writer December 29, 2005
BALTIMORE -- A Johns Hopkins University School of Medicine study reinforces what many people familiar with Lyme disease have been saying for years -- existing testing methods are not accurate for detecting the disease in its early stages.
Lyme disease, named after the Connecticut town where it was discovered in the `70s, is caused by bacteria generally transmitted to people by deer ticks, although it can be carried by other insects and mammals as well.
If not properly treated, Lyme disease can lead to major chronic problems, including severe arthritis, fatigue, fever, headaches, and muscle and joint pains, according to the Centers for Disease Control. Ultimately, untreated Lyme disease can kill.
In the early `90s, fewer than 10,000 cases were reported annually nationwide. In the past few years, the number has hovered at and above 20,000, according to the CDC, the vast majority of which were reported in June, July and August. There were 891 reported cases of the disease in Maryland in 2004, according to the Maryland Department of Health and Mental Hygiene.
Different studies have estimated that for every case reported, however, between four and 12 cases go unreported.
Hopkins doctors performed different tests in samples from 86 people with Lyme disease symptoms in 2001 and 2002, but did not release the report until recently. They determined some tests to be wholly ineffective, while combinations of other tests proved more successful.
``Although the laboratory testing for diagnosis of Lyme disease is improving, the degree of sensitivity needed for a high level of assurance at the time of early Lyme disease is still not obtainable, even through combinations of various laboratory tests,'' the Hopkins report concludes. ``Thus, clinical suspicion based upon well-recognized cardinal features of Lyme disease is still the most appropriate approach.''
The virus' trademark symptom is a bullseye-shaped rash, which can appear anywhere within a month after the bite. The CDC says the rash shows up in only 68 percent of those diagnosed with Lyme disease, however, while others' only symptoms may be headaches, pains, fatigue, chills or fever.
Many people who come down with Lyme disease do not recall being bit -- about half, according to the International Lyme and Associated Disease Society (ILADS). Further complicating the matter, the disease's symptoms often mimic those of other illnesses, earning it the nickname ``the great imitator.''
The World International Lyme Disease Emergency Rescue (WILDER) Network, consisting of doctors and Lyme disease educators, lists 48 illnesses Lyme disease has been misdiagnosed as on its Web site, www.wildernetwork.org.
Because of this, people such as Lucy Barnes, founder of the Lyme disease education organization ``After the Bite,'' do not have faith in many doctors' ability to clinically diagnose the illness or provide proper treatment. Barnes, who was misdiagnosed herself in the early `80s, has helped thousands of others who have also been misdiagnosed find proper treatment for nearly two decades.
Barnes said she would like doctors -- including those at Hopkins -- to gain a better understanding of the disease's many facets as well as the importance of early treatment. For instance, on Hopkins' online reference for Lyme disease, last updated in June, editor-in-chief Dr. John Bartlett's comments contradict those of several other organizations, including the CDC.
``Patients with chronic fatigue, joint stiffness and/or muscle aches should not have Lyme disease serology (blood tests) and should not receive Lyme disease treatment,'' Bartlett's post reads.
Barnes, who is also working with doctors and the Maryland Department of Health and Mental Hygiene to attempt to establish Lyme disease treatment guidelines, advises anyone who suspects they may have the disease to contact the Lyme Disease Association at 1-888-366-6611 or to visit www.lymediseaseassociation.org or www.ilads.org.
Please let the Star Democrat know that we are happy with the article by emailing them at [email protected] Or calling at 410-882-1500
[ 30. December 2005, 10:43 AM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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trueblue
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posted
Thanks for posting this, Melanie!
I've emailed them. If I could do it any one can.
Ok, who's next?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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cantgiveupyet
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posted
I emailed them too :-)
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
E-mailed them also. It is important to take a few minutes to do this!!! Lymelady
Posts: 484 | From Fredericksburg, Va USA | Registered: Sep 2004
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-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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Foggy
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Now we need a academic hospital in Boston to admit and publish the same findings.
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Michelle M
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posted
"The virus' trademark symptom is a bullseye-shaped rash,"....
Sorry to nit-pick, but it ain't a virus...
Otherwise, nice job!
Michelle
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Melanie Reber
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posted
Thank you SO much for taking the time to write to this paper in appreciation.
Hopefully, it will encourage the paper and the reporter to continue uncovering the truth as 'we' know it about TBDs.
My best, Melanie
(and yes, although heartbreaking...there have been numerous fatalities associated with TBDs)
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
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Good catch Michelle.
BTW, just a very simple 'Thank you' is all that is necessary for you to make a difference! Posts: 7052 | From Colorado | Registered: Mar 2003
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This is out of MD and is one of those sites that requires registration to read this particular article, but you can register for 10 days only, and it is quick and relatively painless to do so.
And thanks for asking...I AM doing well! Working full time and pretty much back to good most days. Posts: 7052 | From Colorado | Registered: Mar 2003
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Ann-OH
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posted
Thank you for the article.
Good to see our friend is still in there carrying on the good fight and in this article getting a bit of recognition.
posted
Thanks much for posting this. I just fired off an email to the newspaper.
-------------------- Posts: 703 | From Almost Heaven | Registered: Aug 2004
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lymeloco
Unregistered
posted
Well, it's great that they're saying that, but today's article looks like it's trying to blame the very thing that helps lyme...for being the cause of something else. Notice the names in both articles.
posted
anyone have a link to the publication that this article refers to? I haven't been able to find it myself.
thanks in advance
Posts: 15 | From Denmark | Registered: Mar 2005
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Lydie
Unregistered
posted
This article actually implicates heartburn drugs more than antibiotics, if you read to the end. They get rid of stomach acid, which, when present, keeps overgrowths down. It says that at present, many C. Difficile patients have never been on antibiotics at all.
None of us would claim that antibiotics are without risk...chemotherapy, steroids and most other meds, actually, have bad side-effects and can be fatal. It is a serious decision to treat Lyme, but often a necessary one.
The "other side" thinks that Lyme patients are incurring these risks casually, or for reasons that are scientifically unproven.
The fact that tests are unreliable, and clinical diagnosis is open to question, has greatly contributed to this situation. There is nothing "objective" to go by and, if the antibiotics cause harm, the MD's are liable.
We need better tests and more research!
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Melanie Reber
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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]
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trueblue
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posted
Thanks for putting up the study results, Melanie.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Melanie Reber
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posted
Below is a message from Tincup:
Just so you ALL know...
Your responses to the newspaper made a BIG difference and this article has been published now in 4 different newspapers in 4 days! Since it is copyrighted it can't get into other papers as is... so I am busy writing up additional articles about the Hopkin's blood test study for other papers.
But before I do I wanted to say.... THANKS so much for supporting the ongoing efforts! This stuff wouldn't get published without YOUR support and efforts! When folks take time to thank the reporters who write decent articles about Lyme and the newspapers who publish the articles, it makes them see this is important to readers and they will continue.
The reporter- Steve Nery- is new to this paper and this state. He had a couple of dozen responses from you guys... and he is already asking me for more information to write another article! He wants to do some really hard hitting stuff.. and I can barely keep up with his requests for more info!! I think as a reporter who normally does NOT do medical articles.. and who didn't know Lyme at all.. he has done a great job here.
Yes.. I have warned him this is NOT a topic some ducks will appreciate.. but he is still researching and reading.. and my warnings have not slowed him down a bit! I wish we had a hundred like him out there!
The Editor's of these papers KNOW Lyme is a BAD problem.. and thankfully they are willing to assist in getting the truth out there and getting folks some help. Bless their hearts.
And bless YOURS! Keep up the good work! Thanks for helping!
And please note- I miss you all very much! Except of course, Lyme tutu... cause she is a GOON!
I just read the article entitled ``Study finds Lyme Disease tests unreliable'' by Steve Nery and found it to be informative and well done. As someone who's been battling with Lyme disease and other tick-born diseases for 20-plus years, I'm particularly grateful that someone is putting the word out that it exists, testing is inadequate and it needs to be treated early and not brushed under the rug. Thank you for printing this article.
Regarding the study that finds Lyme disease tests unreliable, this is an excellent article! At last, a newspaper has the wisdom and courage to print the truth about this terrible disease that is so devastating to those of us who have it.
I have chronic nervous system Lyme disease diagnosed two years ago after being misdiagnosed by every specialist I could find. I was confined to bed for two years and just recently have begun to make some progress.
This disease which mimics so many other complex diseases appears to be ``under the radar'' of most conventional medical doctors, including infectious disease doctors. The testing is atrocious and there are only one or two labs which can test correctly for this disease which is one of the fastest-growing infectious diseases in the United States.
Lucy Barnes should be congratulated for her hard work over the years trying to help others with this devastating disease and the medical community in her efforts to educate them about the testing, symptoms and treatment.
In his recent article, ``Study finds Lyme disease tests unreliable'' Steve Nery does a wonderful job of reporting on the fact that the tests are not what they should be. After 30 years, there still is not a decent test or a reliable treatment for Lyme disease. Seems unbelievable. Thank you so much for this piece and for quoting Ms. Barnes and all she does to help people with Lyme disease.
ANN Ohio
[ 07. January 2006, 11:22 AM: Message edited by: lymelady ]
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trueblue
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Apparently, this article has been (or will be) run in at least 8 newspapers. The paper was very happy that folks bothered to reply.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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