Why is Publishing a Number for the Lyme Disease Epidemic Guesswork?

Why is Publishing a Number for the Lyme Disease Epidemic Guesswork?

Lately, most people either know someone personally who is suffering with Lyme disease, or they know someone who is close to someone suffering with Lyme disease.

Unfortunately, even though the Lyme disease Epidemic (better referred to as Borrelia Epidemic) continues to snowball, there are no real numbers that can be tallied.  And other than the occasional, yet steadily increasing news stories, we have to rely on word of mouth to get a feel for the spread of this disease.

It is a normal reaction to look at the CDC (Center for Disease Control), whose federal mandate is to keep an accurate count of the number of people exposed and/or infected by a contagious disease. However, the CDC admits that they don’t really know the exact number of people infected each year:

“Limitations of surveillance data”

  1. Under-reporting and misclassification are features common to all surveillance systems.  Not every case of Lyme disease is reported to CDC, and some cases that are reported may be due to another cause. Under-reporting is more likely to occur in highly endemic areas, whereas over-reporting is more likely to occur in non-endemic areas.
  2. Surveillance data are subject to each state’s abilities to capture and classify cases, which are dependent upon budget and personnel and varies not only between states, but also from year to year within a given state. Consequently, a sudden or marked change in reported cases does not necessarily represent a true change in disease incidence, and should not be construed as such without knowledge of that state’s historical surveillance practices.
  3. Surveillance data is captured by county of residence, not county of exposure.
  4. States may close their annual surveillance dataset at a different time than CDC. Thus, the final case counts published by CDC may not exactly match numbers published by each state agency for a given year.
  5. Following its implementation in 1991, the national surveillance case definition for Lyme disease was modified in 1996 and again in 2008.  Changes were generally minor but may have had some impact on surveillance and must be considered when attempting to interpret trends.

See: http://www.cdc.gov/lyme/stats/survfaq.html;  Also of interest:

How many people get Lyme disease?

Each year, approximately 30,000 cases of Lyme disease are reported to CDC by state health departments and the District of Columbia. However, this number does not reflect every case of Lyme disease that occurs in the United States every year.

Surveillance systems provide vital information but they do not capture every illness. Because only a fraction of illnesses are reported, researchers need to estimate the total burden of illness to set public health goals, allocate resources, and measure the economic impact of disease. CDC uses the best data available and makes reasonable adjustments—based on related data, previous study results, and common assumptions—to account for shortcomings and missing pieces of information.

See: http://www.cdc.gov/lyme/stats/humanCases.html

So this is all about good guessing.

How can any organization get even close to a true number of Americans infected with Borrelia (or Lyme disease) without an accurate diagnostic test? We now know that there are at least 300 species of Borrelia.

If we can’t even accurately diagnose one species, Borrelia burgdorferi,  how can we possibly follow the increasing numbers of those infected with other Borrelia species?

Also, you probably have heard that only 50% of people who are diagnosed with Lyme disease ever had a bulls-eye rash (or EM for erythema migrans, the technical name for the rash) – that is just for people who are diagnosed.

But the truly frightening consideration for all of us to consider is that many people who are infected never see the rash AND never feel sick initially.  So if a person suddenly feels fluish and their joints get achy, or they begin to feel one or more of the hundreds of symptoms Borrelia can present with, what do they do?

Typically a person will wait and see if the symptoms resolve themselves which many times they do. So cases of undiagnosed Borrelia get worse and worse breaking down the immune system until the chronic condition becomes acute at which time doctors refuse to consider Lyme disease (unless they are extremely lucky and happen to have a doctor that is open minded and up-to-date on the strange manifestations of Borrelia.)

Do you have Fibromyalgia? MS? ME/CFS? Gulf War Syndrome? Thyroid disease? Autism? These are all diseases that can be misdiagnosed, and without clear diagnostics for Borrelia than all of these diseases could actually be Borrelia making the Epidemic even larger.

Continue this thought process  with Dr. Scott Taylor’s updated article about Lyme disease. He includes, important medical facts, Q & A, research to consider and even  some alternative treatments with helpful supplements and herbs:  http://www.ra-infection-connection.com/Scott%20Taylor%202004%20CHRONIC%20LYME%20DISEASE.html.  The original article was published back in 2004, and it was considered sensational and non-scientific.  Now it is considered prophetic.

So we can understand why Lyme disease is sometimes called the “hidden” epidemic.  I think that is extremely appropriate.  As the other diseases it mimics such as MS, chronic fatigue syndrome, fibromyalgia, Bells Palsy and dozens more including a host of psychiatric diseases, they all have similar symptoms as Borrelia and most knowledgeable doctors agree that many people are misdiagnosed with these other conditions.

 

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