Emerging Infectious Diseases, March-April 2000
"In North America, Lyme disease and endemic relapsing fever pose the greatest threat to human health and have received the most attention of the borrelial diseases. Approximately 14,000 cases of Lyme disease are reported in the United States each year; however, the actual number of cases may be 10-fold higher (2)."

MMWR January, 2002
"The findings in this report are subject to at least three limitations. First, because LD is reported through passive surveillance, LD is underreported, and the distribution and demographics of reported cases could be biased. Second, LD is underreported in areas where disease is endemic and might be overreported in areas where disease is nonendemic. Third, not all LD patients present with typical manifestations; other conditions might be confused with LD and laboratory testing might be inaccurate."

MMWR April, 2000
"As with a majority of diseases reported through a passive surveillance system, Lyme disease is underreported. Studies in Connecticut and Maryland estimated 7--12 unreported cases for each reported case (20,21). Additionally, the case definition has limitations of sensitivity and specificity."

CDC Website
"The overall incidence rate of reported cases in the U.S. is about 5 per 100,000 population, but there is considerable underreporting."

The public health impact of Lyme disease in Maryland
(Referenced in CDC publications)
"Results show that LD is underreported by 10- to 12-fold in Maryland,"

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Lyme Disease Information Online:
http://www.lymeinfo.net
Lyme Disease Information By Email:
http://groups.yahoo.com/group/lymeinfo/
New Yorkers, please see:
http://www.lymeinfo.net/newyork.html
 

Or perhaps they are on your LymeInfo website already, huh? (Sorry, but I have trouble keeping up with all the websites and other info out there myself.)
 

I am posting it on The Iowa Lyme Disease Assoc's Physicians Page.

Trout Scout
 

------------------
Lyme Disease Information Online:
http://www.lymeinfo.net
Lyme Disease Information By Email:
http://groups.yahoo.com/group/lymeinfo/
New Yorkers, please sign up:
http://www.lymeinfo.net/newyork.html
 

Even though I had a poss. test from another lab.

So, I know mine was never reported. I asked him why with the fact that he treated me 4 wk. doxy and other tests. Did not have a answer, except we are just experimenting with you, but since you got sick on doxy and you still are sick your problem is mostly fm.

I asked about my history of all the bites and then in hosp. with viral meningitis. Doe`s that make sense now. Since all the docs could not figure out why I had meningitis at my age and then was never well again? He just wanted to get rid of me then. He hates to get involved in anything, even SSD, he is noted for backing down as I fouund out later.
 

From CDC Website: http://www.cdc.gov/mmwr/mmwr_wk.html

The MMWR weekly contains data on specific diseases as reported by state and territorial health departments and reports on infectious and chronic diseases, environmental hazards, natural or human-generated disasters, occupational diseases and injuries, and intentional and unintentional injuries. Also included are reports on topics of international interest and notices of events of interest to the public health community.

 

EXCERPT:

Thank you for your correspondence. Regarding your third question: (3) What percentage of Lyme patients who meet the "surveillance criteria" are not reported? What percentage of patients are not accounted for according to the criteria for surveillance?.

There are several issues here. Anecdotally the CDC has stated that perhaps only as many as one of every ten Lyme cases are reported. There may be many factors that contribute to this situation: Some people may never recognize their symptoms and do not seek medical attention, physicians may not recognize the disease in some persons or may not fulfill all reporting responsibilities, there may be cases not reported due to errors in the state reporting system. Finally, if people do not meet the surveillance criteria per se, but rather present with unidentified cases that do not meet all the criteria the physicians do not report them. Physicians do not report to the
state how many people partially meet the criteria, therefore there are not accurate numbers to know how many people are thus described -- i.e. there are no figures on how many others are seen in physician's practice who are NOT reported, nor how many people do not seek medical attention.

Email to me from the CDC, July 1999:

"Per your inquiry, CDC has no specific program dealing with "chronic" Lyme disease. CDC Lyme disease program focuses on the surveillance, epidemiology, prevention and control of Lyme disease, and does not have a treatment protocol or guidelines on management of LD patients."

From the CDC case definition:
http://www.cdc.gov/mmwr/preview/mmwrhtml/00047449.htm

"This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis."

 

Health Insurance Companies
 

It said that public health hospitals were more likely to report cases than private physicians, and that it was common to have diseases be greatly underreported. So this seems to be part of the system, not a plot against Lymies, although it certainly does work against us.
 

I think she can read my mind!

quote:

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Originally posted by Tincup:
Not only excellent information.. as usual.. but perfect timing too!

I think she can read my mind!

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