Sorting through Lyme Disease Groups (Patient Advocates vs. Non-Advocates)

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Acronyms abound in the lyme world and I haven't fully learned yet how to keep track of who is who amongst all the various lyme groups.  When you are newly diagnosed or newly interested in lyme disease, they all sound just about the same.  There's obviously and L and a D, then an organization or association in there somewhere.  But the really horrible ones sound just as good as the truly good ones when you first hear their names (the movie Under Our Skin helps distinguish amongst the major players and serves as a good primer).

In most cases, if you were to read through the position statements and home pages of groups that sound objective or patient focused, as a person without any lyme disease familiarity, the differences wouldn't pop out right away.  Until you started to see certain trends emerge (that wouldn't sound too ominous at first, unless you are actively seeking diagnosis or treatment, in which case they slam into the side of your skull with great force):

• Only a few states have lyme disease present to an extent that warrants testing residents with lyme symptoms
• Many people only think they have lyme disease and waste public resources seeking treatment
• If you don't live in one of those states you don't have lyme (they will count you if you recently traveled to tick endemic area, but good luck getting treated when you've returned home and become sick, as many doctors get stuck on their beliefs regarding the prevalance of lyme in their state and fail to properly assess the symptoms of the patient)
• Only deer ticks carry lyme disease (I haven't seen any compelling biological/clinical evidence of this)
• Even though many areas are not looking at tick distribution, we know for sure that deer ticks only occur within the estimation bubbles on CDC's occurrence map
• The idea of chronic lyme is a misnomer (lyme requires urgent treatment, but apparently if you don't get treated it just magically disappears)
• If the tick wasn't imbeded for 24 hours, you don't have lyme disease
• If you didn't see a rash, its not lyme disease
• I you aren't proficient in tick identification, you don't have lyme disease
• If your state is not proficient in tick identification, you don't have lyme disease

The tenets of scientific inquiry do not support the chain of logic these groups (unfortunately including NIH and CDC, amongst other entities you might assume you can trust) use to support or even to test their claims.

Lyme patients don't sound like conspiracy theorists because they have far fetched notions about their illness.  We sound like this because logic and science support very different conclusions than oversight agencies and lyme organizations not based on sound science or the interests of patients.

The first viewing of movies like Under Our Skin or the first read through of a true advocacy group's position, given the wide gaps in logic and process that exist within lyme politics and guideline development, do tend to sound conspiratorial.  But when you look at the position of the CDC and IDSA, and then take any time at all looking into their claims with any degree of dilligence or rigor, you quickly see that compared to their claims, research states otherwise, experts with actual research experience in this field state otherwise, and the experiences of millions of people with lyme disease state otherwise.

The frustrating trends noted above go far beyond general misinformation and keep millions of people from getting timely treatment around the world.  Robbing people of their youth and vitality and costing hundreds of thousands of people their productivity is a far greater waste of public resources that it would be to treat them all.