Lyme Disease especially NY, NJ, PA MA, CT & RI

[runnynose]

erlichia

In Lyme endemic areas though, appearence of erthyma migrans or fever and very suggestive symptoms, most docs will start tx and retest in a couple of weeks to confirm. Its one of those diseases that most state Health Departments track, so testing is necessary for epidemiologic studies. However, with health ins, etc, some docs will forgo and help a pt out with antibiotics and not test.


actually lyme is a clinical diagnosis and serologic testing is not required for reporting. and if treated very early in the acute stage the labs may not turn over at all.

good point about the erlichia

 

[una_dogger]

I'm fairly certain (unless this has changed -- ) that if erythema migrans is present,that is confirmatory and dr must report to NYSDOH -- in terms of reporting requirements for labs in NY -- definately positive Lyme Titers are to be reported to NYSDOH, the labs I've been in; anything positive is reported and anything equivocal is reflexed to western blot.

I'm sure states differ, though!

Sabrina

 

[una_dogger]

and if treated very early in the acute stage the labs may not turn over at all.

good point about the erlichia

Oh, I think I understand what you meant, tx early stage = no immune (Ab) response. Got ya.

Are you a Doc?

 

[rhihn]

Reflexed to western blot? IgG? Flagella of Borrelia burgdorferi? Titers?

As a layperson I don't know if reporting is required or not, but my doctor did say something about reporting my case.



Dick

 

[una_dogger]

Sorry
other poster sounded like a medical person!

B burgdorferi = the bacteria that causes lyme, transmitted by tick bite
titer= fancy lab word that just means how diluted the sample was that was still giving a positive result
IgG= the class of antibody your body makes (or given as a vaccine) for lifelong recognition of invader
flagella=tail like structure on some microorganisms
reflex testing= a test that is done automatically if a previous test is positive, a confirmatory step
western blot= a more sophisticated test that looks deeper into the problem than a screening test will

 

[Umsaskis]

A note of serious warning: it is VERY easy to have Lyme disease for a long time (years) and not know it, and furthermore, it can be VERY difficult to get your doctor to acknowledge that you may have it, to test you for it, and to treat you if the test comes up negative. My sister had the disease for 7 years before she was diagnosed, and her diagnosis was not on the basis of a test (both tests came up negative) but rather on the basis of symptoms. Her sister-in-law had it for 9 years before being diagnosed. At that point, for both of them, there were serious consequences - the sister-in-law had to quit work and has been struggling with neurological problems ever since, and my sister had serious back and joint problems, was frequently sick, and literally couldn't think clearly (she walked into a closed door, unplugged the telephone while she was talking on it, and that sort of thing).

If you think you have potentially contracted Lyme disease, with or without a rash, fever, or other symptoms, PUSH for your doctor to test and treat you. Ask for the Western Blot test, not the ELISA, because the Western Blot is more accurate (although can still have a failure rate of 20%). If your doctor will treat you, be sure to get 6 weeks of antibiotics, not the standard 3 - 3 weeks is not long enough to cover the complete life cycle of the bacterium.

Again, very few doctors will treat Lyme disease without a positive test, and they can be reluctant to test you without symptoms, so you have to be your own advocate. This may mean getting second or third opinions. It's a pain but it beats having all the problems that can result from not getting treated.

 

[Sara]

Thanks for the info...

This thread couldn't have come at a better time. Just this past weekend we pulled a fully engorged tick off our chocolate lab. We were shocked to think that that was possible as early as March 19th, but there it was.

Although we have her vaccinated annually for LD I still worry. Each year it seems we're pulling off more and more ticks.

 

[bobmak]

I can't stress enough how important it is to take this seriously, especially the posts by Umasaskis and una_dogger, among others. I now personally know of two people that have now been diagnosed with chronic Lyme several years after originally being infected. They both had gone through the medical system for years, through a long list of reputable physicians, only to be misdiagnosed repeatedly. One is, for all practical purposes, a shut-in and has been told that at this time there is no cure. The other is dealing with constant fatigue and joint pain.

I live north of Boston in Essex county; my area is a hot bed of Lyme activity. It is not difficult to find people that are living with this and have been for years. There are several articles a year in the local papers about people that are living with this in a chronic state; there are even support groups for infected people and their families run by the local hospitals. Last year, a meeting at the State House in Boston to discuss this drew a standing room only crowd of patients and their families. For those of you in NH, this is from an article I read in the Union Leader last year regarding a study in which they actually collected ticks and tested them for Lyme:

"What they found was that more than half the ticks collected in Lee and Durham were infected — and in the Concord site, it was over 70 percent.

"So what this tells us is that in both of these places, the Seacoast and the Concord site, it clearly has been established for quite some time," Eaton said. And he added that a similar incidence of infected ticks is likely in most of the rest of the state as well."

Deer ticks are very tiny and hard to see. Be careful friends, this is serious stuff.

 

[runnynose]

bad advice

A note of serious warning: it is VERY easy to have Lyme disease for a long time (years) and not know it, and furthermore, it can be VERY difficult to get your doctor to acknowledge that you may have it, to test you for it, and to treat you if the test comes up negative. My sister had the disease for 7 years before she was diagnosed, and her diagnosis was not on the basis of a test (both tests came up negative) but rather on the basis of symptoms. Her sister-in-law had it for 9 years before being diagnosed. At that point, for both of them, there were serious consequences - the sister-in-law had to quit work and has been struggling with neurological problems ever since, and my sister had serious back and joint problems, was frequently sick, and literally couldn't think clearly (she walked into a closed door, unplugged the telephone while she was talking on it, and that sort of thing).

If you think you have potentially contracted Lyme disease, with or without a rash, fever, or other symptoms, PUSH for your doctor to test and treat you. Ask for the Western Blot test, not the ELISA, because the Western Blot is more accurate (although can still have a failure rate of 20%). If your doctor will treat you, be sure to get 6 weeks of antibiotics, not the standard 3 - 3 weeks is not long enough to cover the complete life cycle of the bacterium.

Again, very few doctors will treat Lyme disease without a positive test, and they can be reluctant to test you without symptoms, so you have to be your own advocate. This may mean getting second or third opinions. It's a pain but it beats having all the problems that can result from not getting treated.

i am hearing a suprising large amount of fear and distrust towards the medical profession and misinformation about lyme. the bottom line is the western blot is standard procedure these days and it is not necessary to PUSH for it. and 6 weeks is NOT the recommended treatment based on ANY medical literature out there. the current recommendation for acute lyme disease is 21-28 days, and tertiary lyme, which the author is referring to is treated entirely differently (usually requires iv antibiotics) dependent upon the specific symptoms present. the incidence of lyme is so high it is routinely tested at the drop of a hat and often at the request of an asymptomatic and anxious patient merely for reassurance purposes. if your level of mistrust of your primary care practitioner is that high there are ample infectious disease specialists available and i personally would not undergo long term treatment for "lyme disease" without consulting with one given the complexity of tertiary lyme. there are good medical people out there. i seem to be hearing so much mistrust and hostility toward the medical profession on this and the other lyme post. lyme is still a fairly "new" disease and there are cases that were misdiagnosed at a time when it was less prevalent; however, given the sheer quantity of ticks and the numbers of cases of lyme, it is now considered a pretty straightforward diagnosis. if you dont believe me, a random poster, please ask your doctor. help quiet the fear and misinformation!!