posted
Can someone verify this for me...I rec'd it from tofulymegroup
I can't seem to find any online references to it anywhere else.
Lyme Tests- A Lemon?
As Maryland climbed the ladder to become the 4th highest in the country for new cases of Lyme disease, Johns Hopkins released the results of a two year study indicating blood tests missed 75 percent of the people with Lyme. Hopkin's latest results confirmed what the International Lyme and Associated Disease Society (ILADS) has been stating for years- "up to 90 percent" of people with Lyme were being missed using the standard testing methods.
The recently released study admits the sensitivity required for Lyme testing is still "not obtainable", causing a potential nightmare for those who were told they didn't have Lyme due to a negative test and therefore, were denied treatment for a serious and potentially chronic infectious disease.
The study determined skin biopsies of the rash and cultures can be inconclusive. In addition, waiting for results, which may take a month or more, may delay necessary treatment. Without prompt and adequate treatment, the Lyme infection can become more entrenched and more difficult and costly to treat. Testing spinal fluid, an invasive procedure with risks to the patient, has also been determined to be of little diagnostic value.
According to Hopkin's, months after becoming infected, untreated patients can develop chronic major manifestations and can experience serious neurologic, cardiovascular, or musculoskeletal disorders.
To compound the diagnostic problems, less than 50 percent of those with Lyme disease recall a tick bite or remember having a rash. Tick borne infections, such as Lyme, Babesiosis, Bartonella, Ehrlichiosis, STARI, and Rocky Mountain Spotted Fever, which are being detected in Maryland patients by physicians experienced in treating Lyme, can have devastating consequences and can increase the severity of the illness, increase treatment time and associated costs, and can cause permanent disability. An increasing number of deaths have also been associated with Lyme and tick borne infections.
Lyme disease, often referred to as the great imitator, has been misdiagnosed as Fibromyalgia, Multiple Sclerosis, Parkinson's, Lou Gehrigs, depression, panic attacks, arthritis, Alzheimer's, heart related disorders, scleroderma, ADD and growing pains (especially in children), as well as other conditions.
Blood and tissue specimens for the Hopkin's study were collected from 86 Maryland and Pennsylvania residents who were evaluated at the Johns Hopkins Medical Institutions in 2001 and 2002. The results were not published until October, 2005.
Anyone who suspects they may have Lyme disease should contact a knowledgeable physician who follows ILADS guidelines and is familiar with sensitive, up-to-date testing methods which can be utilized to aid in a proper clinical diagnosis.
For more information, please contact the Lyme Disease Association's toll free number, 1-888-366-6611 or visit the following web sites: www.lymediseaseassociation.org AND www.ilads.org Posts: 144 | From British Columbia | Registered: Sep 2002
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posted
This is great . I should print this out and give it to people suffering diseases related to lyme...uuhmmmm
Posts: 983 | From The sky | Registered: Feb 2005
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Re: using C 6 antibody titer to determine if treatment for lyme is or is not effective...take a look at this!
Clin Diagn Lab Immunol. 2005 Sep;12(9):1069-74.
A decline in C6 antibody titer occurs in successfully treated patients with culture-confirmed early localized or early disseminated Lyme Borreliosis.
Philipp MT, Wormser GP, Marques AR, Bittker S, Martin DS, Nowakowski J, Dally LG.
Department of Bacteriology and Parasitology, Tulane National Primate Research Center, Tulane University Health Sciences Center, Covington, LA 70433, USA. [email protected]
These results indicate that a decline in anti-C(6) antibody titer coincides with effective antimicrobial therapy in patients with early localized or early disseminated Lyme borreliosis.
Pre-treatment and post-treatment assessment of the C(6) test in patients with persistent symptoms and a history of Lyme borreliosis.
Fleming RV, Marques AR, Klempner MS, Schmid CH, Dally LG, Martin DS, Philipp MT.
Department of Medicine, Boston University Medical Center, 650 Albany Street, Room 620, Boston, MA 02118, USA.
� Antibodies to C(6) persisted in these patients with post-treatment Lyme disease syndrome following treatment, albeit at a markedly lower prevalence and titer than in untreated patients with acute disseminated Lyme disease. The results indicate that C(6) antibody cannot be used to assess treatment outcome
or the presence of active infection in this population.
PMID: 15243815
They can't find the markers of a lyme infection with accuracy and it appears they cannot access if treatment has been effective or not either!
Guess who was trying to promote their new lyme test (C 6) as being the most accurate?
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
For you... Johns Hopkins Study 2005: found CDC 2-tiered testing missed 75% of positive Lyme cases. Coulter, et. al., J Clin Microbiol 2005; 43: 5080-5084.
Posts: 422 | From CT | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I could not find the info. in the first post connected to JH.
Does anyone have a link for that? It's several years, old, though.
I've been considering going to J H for inner ear surgery, if a certain condition is present.
However, just days ago, I read their main web site's info on lyme and was shocked and dismayed. They are not at all up to speed on this. Not at all. I don't know where that information in the first post above is from, but not from them - or from their site, anyway.
I would not feel safe there as they seem to ignore lyme for the most part. And, they lump it under arthritis, ignoring the other neuro and systemic factors.
Quote: " . . . a positive serologic test result is more likely to be false positive than it is to be true positive. . . ."
I am to assume all the JH doctors follow this illogical train of thought if it is on the JH web site.
I just would not feel safe at JH if I had to be on steroids for some reason around the surgery, but also still having chronic neuroborrelia (which means steroids can be dangerous w/o proper precautions).
So, I'm trying to find out who else does this but am told no one. How great it would be for anyone required surgery or treatment for other stuff to have doctors who would know about lyme and how it interacts, etc.
Lyme Disease Diagnosis by Brian Schwartz, M.D., M.S.
How is Lyme disease diagnosed?
Excerpts:
. . .
Classical later presentations such as unilateral facial palsy, heart block, or frank monoarticular arthritis of the knee, should motivate the physician to obtain appropriate diagnostic tests for Lyme disease and to exclude other causes.
Diagnosis of Lyme disease is aided by serologic testing, which should include antibody testing by ELISA, and if positive, follow-up with Western blot testing for both immunoglobulin G and M antibodies. By 6-8 weeks of infection, most patients will have an appropriate antibody response.
The sensitivity of serologic testing is approximately 50% at the erythema migrans stage, but increases to over 90% by the later stages of the disease.
Serologic testing is thus not very helpful in a patient with classic erythema migrans, who will be treated for Lyme disease regardless of the serologic test result.
The specificity of serologic testing is approximately 90-95% for all stages of the disease.
. . .
As recommended by the Centers for Disease Control, a positive ELISA test result must be followed by Western blot testing. The usual criterion for a positive Western blot for IgM is at least two bands corresponding to proteins of specific molecular weights (two of the following three: 23, 39, or 41 kDa).
For Western blot testing for IgG, the usual criterion is five bands corresponding to proteins of specific molecular weights (five of the following ten: 18, 23, 28, 30, 39, 41, 45, 58, 66, or 93 kDa).
. . .
Other diagnostic testing modalities are available. These include polymerase chain reaction (PCR) testing of blood, skin biopsy samples, cerebrospinal fluid, joint fluid, or urine. Some laboratories are selling a Lyme urinary antigen test.
At this time, these tests must all be considered to be research tools and are generally of limited clinical utility. PCR testing of blood or urine seems to have no clinical utility and is not recommended.
. . .
In the patient with numerous nonspecific symptoms that may or may not be compatible with Lyme disease, the clinician must understand that if the pretest probability of Lyme disease is low, a positive serologic test result is more likely to be false positive than it is to be true positive.
Lyme disease serologic testing should be used with caution in patients complaining solely of nonspecific symptoms such as, for example, chronic fatigue, headaches, or diffuse musculoskeletal
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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