Lyme and CFS

[Guest guest]

Note the date: I understand testing has become more powerful since then, Beach.

Adrienne

Lyme and CFS

Because several people have mentioned Lyme and CFS in the same

breath, I thought that I would mention the following:

According to a medical paper published by Dr. Bell, titled " Risk

factors associated with chronic fatigue syndrome in a cluster of

pediatric cases " by Bell KM, Cookfair D, Bell DS, Reese P, L and

published in Rev Infect Dis. 1991 Jan-Feb;13 Suppl 1:S32-8,

Dr. Bell tested all his patients for Lyme and they all tested negative!

FYI,

Beach

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

> Because several people have mentioned Lyme and CFS in the same

> breath, I thought that I would mention the following:

> According to a medical paper published by Dr. Bell,

titled " Risk

> factors associated with chronic fatigue syndrome in a cluster of

> pediatric cases " by Bell KM, Cookfair D, Bell DS, Reese P,

L and

> published in Rev Infect Dis. 1991 Jan-Feb;13 Suppl 1:S32-8,

> Dr. Bell tested all his patients for Lyme and they all tested

negative!

>

> FYI,

> Beach

This means absolutely nothing, it depends what tests were used, most

are useless in late onset Lymes disease.

Pam

[Guest guest]

I don't think that would be significant at all. I would like to know the

testing methods though--like did they use the highly innaccurate ELISA just like

my ignorant CFS doc did in VA when I first went to him with a request to test

me for lyme, skipping the WB test alltogether (it's amazing b/c when I went to

Labcorp office after finally seeing a LLMD they were surprised I was getting

WB's w/o and thought WB is done only after getting a pos on ELISA, yet

any lyme literate person knows ELISA is practically worthless except for if one

has very recent tick bite exposure)? Even people I know who were bit by

ticks and got lyme showed up neg for CDC standards using Labcorp western blots,

so

taken back in 1991 I'd say it would be virtually irrelevant that Bell found

it in none of his patients. In fact, even a lyme skeptic should realize that

there are always going to be crossovers and misdiagnosis and folks who got lyme

from a tick bite but never recognized it and walked around thinking they are

CFS, so the fact that none of his patients showed up as lyme when at least a

few should have just based on misdiagnosis ought to suggest the high

inaccuracies of testing. FWIW.

In a message dated 4/17/2004 2:58:10 AM Eastern Daylight Time,

writes:

Because several people have mentioned Lyme and CFS in the same

breath, I thought that I would mention the following:

According to a medical paper published by Dr. Bell, titled " Risk

factors associated with chronic fatigue syndrome in a cluster of

pediatric cases " by Bell KM, Cookfair D, Bell DS, Reese P, L and

published in Rev Infect Dis. 1991 Jan-Feb;13 Suppl 1:S32-8,

Dr. Bell tested all his patients for Lyme and they all tested negative!

[Guest guest]

Yes, technology has changed over the years regarding testing....it

always does.....but read on:

Lyme disease is the most prevalent vector-borne disease of humans in

the United States and is transmitted by the bite of Ixodes ticks.

Infection is caused by the bacterium Borrelia burgdorferi resulting in

an illness affecting various organ systems of the body. The clinical

implications of Lyme disease can be seen in dermatologic, neurologic

and rheumatologic manifestations.

No matter what causes the manifestation of Lyme disease, the key to

avoiding serious effects is prompt diagnosis and treatment of the

underlying disorder. Unfortunately, making a definitive diagnosis of

Lyme disease during the early stages can be difficult, especially when

the characteristic rash is not evident. Other symptoms, such as

flu-like complaints, which can be caused by many other factors, are

added to the severity of the problem. Moreover, available blood tests

for diagnosing Lyme disease detect antibodies that, in most cases, do

not appear in the blood until several weeks or months after the onset

of infection. This property makes the current laboratory diagnosis of

antibody detection unreliable. The diagnostic value of antibody assays

is unsatisfactory in early disease due to low sensitivity, serological

cross-reactions and the inability to distinguish between active and

inactive infection due to antibody persistence after therapy.

The pathogen can also be detected by culture; however, the sensitivity

of this technique is low, ranging from 30 to 70% for culture of skin

biopsy specimens to less than 5% for culture of cerebrospinal fluid.

This lack of sensitivity of culture methods is due to the low number

of organisms in clinical specimens.

Due to poor sensitivity and specificity of serological tests for Lyme

Borreliosis, and since clinicians tend to rely upon these tests as the

primary indication of infection, laboratories are required to

participate in a proficiency-testing program. In fact, based on these

proficiency tests, 55% of laboratories participating in the Wisconsin

Blind Testing Program could not accurately identify serum samples from

Lyme disease patients containing antibodies against Borrelia

burgdorferi. In addition, up to 27% of laboratories identified as

positive serum samples from individuals with no known exposure to B.

burgdorferi. This false positivity in the antibody reaction is related

to the cross-reactive spirochetes, to which healthy controls may have

been exposed before.

To overcome problems related to the presence or the absence of

antibodies during the active or chronic phase of the infection and to

solve specificity, sensitivity and false positivity of Lyme disease

diagnosis, one should apply DNA technology. Detection of B.

burgdorferi-specific DNA fingerprint in the body fluid indicates the

presence of the whole organism, since spirochete DNA would be unlikely

to persist very long after the spirochete that carried it had perished.

PCR for the diagnosis of infectious diseases has been directed

primarily toward the detection of organisms for which conventional

diagnostic techniques either lack sensitivity or specificity. Unlike

other bacterial and viral disease, the number of organisms in clinical

specimens in Lyme disease is extremely low. Although there can be up

to 4,500 spirochetes per infected tick, the number of genomes in the

urine or blood of infected patients is generally less than 50 per ml

and rarely exceeds 5,000/ml.

By utilizing PCR, a targeted sequence of DNA may be amplified at an

exponential rate providing a detection capability unmatched by any

other diagnostic procedure. The ability to detect one copy of a

specific sequence of Borrelia burgdorferi has made PCR methods

attractive in the laboratory diagnosis of Lyme borreliosis. The

advantages of PCR over other methodologies are its speed, its high

degree of sensitivity and specificity, and its cost-effectiveness.

FYI,

Beach

> Because several people have mentioned Lyme and CFS in the same

> breath, I thought that I would mention the following:

> According to a medical paper published by Dr. Bell, titled " Risk

> factors associated with chronic fatigue syndrome in a cluster of

> pediatric cases " by Bell KM, Cookfair D, Bell DS, Reese P, L and

> published in Rev Infect Dis. 1991 Jan-Feb;13 Suppl 1:S32-8,

> Dr. Bell tested all his patients for Lyme and they all tested negative!

>

> FYI,

> Beach

[Guest guest]

Here's the current CDC view of Lyme, from their website:

From the CDC website:

Diagnosis: The diagnosis of Lyme disease is based primarily on

clinical findings, and it is often appropriate to treat patients with

early disease solely on the basis of objective signs and a known

exposure. Serologic testing may, however, provide valuable supportive

diagnostic information in patients with endemic exposure and objective

clinical findings that suggest later stage disseminated Lyme disease.

When serologic testing is indicated, CDC recommends testing initially

with a sensitive first test, either an enzyme-linked immunosorbent

assay (ELISA) or an indirect fluorescent antibody (IFA) test, followed

by testing with the more specific Western immunoblot (WB) test to

corroborate equivocal or positive results obtained with the first

test. Although antibiotic treatment in early localized disease may

blunt or abrogate the antibody response, patients with early

disseminated or late-stage disease usually have strong serological

reactivity and demonstrate expanded WB immunoglobulin G (IgG) banding

patterns to diagnostic B. burgdorferi antigens. Antibodies often

persist for months or years following successfully treated or

untreated infection. Thus, seroreactivity alone cannot be used as a

marker of active disease. Neither positive serologic test results nor

a history of previous Lyme disease assures that an individual has

protective immunity. Repeated infection with B. burgdorferi has been

documented. B. burgdorferi can be cultured from 80% or more of biopsy

specimens taken from early erythema migrans lesions. However, the

diagnostic usefulness of this procedure is limited because of the need

for a special bacteriologic medium (modified Barbour-Stoenner-

medium) and protracted observation of cultures. Polymerase chain

reaction (PCR) has been used to amplify genomic DNA of B. burgdorferi

in skin, blood, cerobro-spinal fluid, and synovial fluid, but PCR has

not been standardized for routine diagnosis of Lyme disease.

FYI,

Beach

> Because several people have mentioned Lyme and CFS in the same

> breath, I thought that I would mention the following:

> According to a medical paper published by Dr. Bell, titled " Risk

> factors associated with chronic fatigue syndrome in a cluster of

> pediatric cases " by Bell KM, Cookfair D, Bell DS, Reese P, L and

> published in Rev Infect Dis. 1991 Jan-Feb;13 Suppl 1:S32-8,

> Dr. Bell tested all his patients for Lyme and they all tested negative!

>

> FYI,

> Beach