Outrage! 79% of tick-borne diseases not being reported!!

Abstract

Lyme disease (LD), anaplasmosis, babesiosis and other tick-borne
diseases (TBDs) attributed to /Ixodes/ ticks are thought to be widely
underreported in the United States. To identify TBD cases diagnosed in
2009, but not reported to the Minnesota Department of Health (MDH),
diagnostic and procedural billing codes suggestive of tick-borne
diseases were used to select medical charts for retrospective review in
medical facilities serving residents of a highly endemic county in
Minnesota.

Of 444 illness events, 352 (79%) were not reported. Of these, 102 (29%)
met confirmed or probable surveillance case criteria, including 91 (26%)
confirmed LD cases with physician-diagnosed erythema migrans (EM). For
each confirmed and probable LD, probable anaplasmosis and confirmed
babesiosis case reported to MDH in 2009, 2.8, 1.3, 1.2 and 1.0 cases
were likely diagnosed, respectively.

These revised estimates provide a more accurate assessment and better
understanding of the burden of these diseases in a highly endemic county.

doi.org/10.1111/zph.12291


79% of tick borne illnesses are NOT reported!!! And, this is just on ONE community! Imagine if they extrapolated that out to include all of the communities in the US, as those in the South or West are even more often misdiagnosed because these infections are not believed to be endemic there!!

Physicians do appx. 3.4 MILLION lyme tests per year... There are several contributors to underreporting of lyme disease.

Primarily, most lyme cases don't qualify per the CDC's surveillance case definition criteria. Here is more info on that (scroll down to my post in this thread):
www.healingwell.com/community/default.aspx?f=30&m=3656205&g=3656280#m3656280

But here is more info on underreporting:

State health departments forward or “report” to the CDC only cases that fit the national surveillance criteria. Subsequently many reports of clinically-diagnosed Lyme never reach the CDC (and the tough cases to diagnose that MDs are also treating are never reported). Public officials and physicians report that often, physicians, who've spent time and money documenting clinically-diagnosed cases, eventually grow discouraged. Some stop reporting to the health departments for these reasons.

This study showed MDs were diagnosing 40 cases for each one counted by Georgia’s State Health Dept. (in other words, the total cases the state’s Health Dept. reports to CDC).

In California, a single lab reported these comparisons: (This particular lab been challenged and aggressively investigated several times and always passes with flying colors. In addition, they are approved by CLIA and by the state of NY, which has the most stringent requirements. Later in my posts I’ll share why limiting “viable labs” is important to those trying to minimize the appearance of LD diagnoses and you’ll more clearly understand the motivation behind undercounting cases.)

Reported by lab in 2005 (Sept - Dec) = 401; Reported by Cal. DHS to CDC = 27

Reported by lab in 2006 (Jan-July 1) = 435; Reported by Cal. DHS to CDC = 21

As was shared during a recent “Lyme Innovation Hackathon” proposal, according to Catherine Brown, DVM State Epidemiologist at the Massachusetts Department of Public Health, 35% of cases reported to DPH went unconfirmed (and therefore unreported to CDC) due to lack of clinical information. While mandated, reporting is manual and extremely cumbersome in a paper network. The Health Dept. has to interview the physician for each patient, which takes 45 minutes. It’s unlikely that DPH from other states are much more effective and Lyme experts estimate there is significant underreporting across the board.

-p

Post Edited (Pirouette) : 7/12/2016 1:11:40 PM (GMT-6)

My cynical side also thinks MDs might avoid reporting because they do not want to keep a low profile.

-p

The other thing to keep in mind is that this study was done 7 yrs ago... Probably not much improvement since then (this study was referenced in a recent Pro Health(?) article but they are always posting articles about old studies but don't identify them as old, which can give the impression that they are recent.)

-p

Well - that's exactly it ---- VERY LITTLE HAS CHANGED. If you look at the majority of the studies/articles/papers used to refute the IDSA or CDC in whatever misinformation of disinformation they're selling, are usually a decade old. It's unconscionable.

So yes, I agree that much of this info is worth repeating and reposting, the other part of the story is that there is relatively no new info. We're just repeating ourselves.

-p
-p

Hi Traveler!-

Thank you for posting this information. This whole thing is sad and frustrating!!!

When I tested positive. I tested positive for both CDC and IGENEX standards.

My doctor said that his patients that tested positive would receive a call from the CDC. He said that the CDC used to call the person within days after a positive diagnosis.

After a while, patients said that it was taking months until the CDC would call them.

I was diagnosed Lyme positive February 2015!!! And I have not yet received any type of communication with the CDC!!!

My doctor said that when the CDC calls you, they will ask some questions.
-How long have you had symptoms?
- Did you get a rash?
- What county/ state did you get infected in?
- What are your symptoms?

And some other basic questions.

I am probably not even one of the statistics of Lyme disease!!

GRRRRR!!!!!!!!

I just don't get it. What is the issue with accepting that this is rampant and that it exists? The only thing that I can think of is that somewhere along the lines, the government did some experiments that have yielded this outcome. Perhaps this is their way to not have people digging deeper and uncovering a big fat nasty lie. When government denies, denies, you better believe that they are involved in some way, and it's always on the wrong side of the issue. And to the point of running doctors out of business, heck yeah there is a cover up.

It's more than just a "coverup" unfortunately. It's bad science, it's tax-payer funded research to support bad science, it's a SHOCKING lack of basic information we should have by now-35 years after the first official case, it's negligent Health care, it's organized disimformation, and it's collusion at the highest levels in our government. It's institutional failure at all levels. And now it's endemic.

I just got done reading through a 500-page documentation of a 2010 National Academy of Sciences Institute of Medicine Lyme "workshop"... I am compiling more into my a piece I'm writing regarding why this epidemic has occurred. I'll be posting at some point later in the summer... Takes a long time for my lymebrain to do this kind of stuff but one very telling commentary by one of the researchers painfully sums up why we are nowhere... I'll share that soon - typing on my phone right now!

-p

It is ironic to read this thread this evening as I have been increasingly become more fed up with the whole '"Lyme system" and how it fails the patients. I was actually contemplating contacting my state representatives as well as my Congressman and Senators today to start DOING something about this epidemic! I am so sick of being sick.

Just today I was reading another medical journal search on Lyme and read about how in late stage Lyme, the arthritis is actually destructive...it is the first time I had seen that in print (ok, on my computer screen) but I KNOW that my right hip and left shoulder were asymptomatic before my illness onset last September and I have diagnosed labral injuries in BOTH joints since December! I had surgery on my hip 5 weeks ago (and it is doing great thankfully) and will see the surgeon next Monday about getting surgery to fix my shoulder (which has calcific tendinitis, bursitis, a SLAP labral tear, and acromial impingement).

We collectively have a very large voice and presence...