What I Wish My PCP Knew RE: Lyme Disease

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(Updated April 2016) Growing up in Wisconsin, I was familiar with ticks.  I remember being told to check yourself and if one was embedded on you that antibiotics would probably be needed—just in case.  What I wish my primary care physician knew about Lyme disease was that all cases are not easily cured, as I was led to believe.

I wish I knew the view that doctors took towards the treatment of Lyme disease and the other associated diseases.  I also wish I knew the difference between a physician of the Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS). I wish they knew of the two standards of care for the infectious disease, Lyme disease. 

If I had known more about the differences of opinion on the treatment and that the current CDC guidelines were insufficient, I would have never become bedridden and lost my job. 

In my research, I found that ILADS offered an outline on What Every Primary Care Physician Should Know About Lyme Disease.  If I had not found an ILADS doctor, I would have never been able to reach the top of my “Climb”.    “The diagnosis and treatment of Lyme disease remains controversial because the scientific understanding of this illness continues to evolve and basic questions remain unanswered. The root of the controversy is the lack of reliable biological markers and diagnostic tests for the disease.  Until we can separate the infected from the non-infected and the cured from the uncured, arguments over diagnosis and treatment approaches will continue.”  (See Videos of PA Lyme Hearing or findings of VA Lyme Task Force.)

Two schools of thought (standards of care), (exemplified by ILADS and IDSA), have developed with regards to the diagnosis and treatment of Lyme disease. IDSA takes a narrow view, defining the illness in strict terms with limited treatment options. ILADS takes a broad view,…” You can read more at the ILADS website, Primary Care Brochure.

Some of the other things that I wish my PCP knew and I had known in the beginning:

  • Not all people show the bulls-eye rash, I found that only 30% get a rash.
  • The tests for Lyme Disease are only 50% accurate. Also, if you are positive you are positive, why take a chance of it becoming worse and going into late stage Lyme Disease when so many have been debilitated by this time and are struggling for years to recover. I was considered negative and my case was pretty clear cut; I had the rash.
  • It can be transmitted inter utero and sexually.
  • The tests only cover a handful of different strains to test for—there are about 300 different strains worldwide and 100 in North America.  (Look at Lyme 101 or ILADS for more thorough information.)
  • Ticks carry many more diseases than just Lyme Disease, such as Babesiosis (Babesia), Bartonella, Ehrlichiosis (Ehrlichia), Rickettsia, Rocky Mountain Fever, etc. which most people just don’t have Lyme.
  • There are hundreds of diseases that the later stages of Lyme Disease are often misdiagnosed of some include Multiple Sclerosis, ALS, Fibromyalgia, lupus, and so many more severe diseases. Why? It is because in the later stages Lyme Disease affects your central nervous system and peripheral nervous system.
  • The conflict of interest of the Infectious Diseases Society of America (IDSA) panel which is the board that has written up the Centers for Disease Control (CDC) treatment guidelines for Lyme Disease which as of yet has really been reviewed. There was an investigation, however, the IDSA failed to play by the rules. ( See Lyme Policy Wonk)

These are just a few things I wish my PCP and I knew.  I also wish I knew that there are so many out there that the treatment as outlined by the CDC does not work for about 20% which I feel is uncalled for with a treatable disease. 

Newly diagnosed with Lyme?  What do I do Now?

The Stages Of Lyme Disease And Symptoms

Testing & Forms of Lyme Disease

Great sources for information:  (Just to name a few, please look under the “Resources” for all the great organizations)

International Lyme and Associated Diseases Society

National Capital Lyme and Tick-Borne Disease Association

LymeDisease.org (formerly California Lyme Disease Association)

Lyme Disease Association

Tick-Borne Disease Alliance (formerly Turn the Corner Foundation)

 If you click on the states, you will also find what is available in the particular state such as organizations, support groups, testing laboraties, websites, and blogspots.  This is a work in progress and will be updated as information becomes available.

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Keywords:  infectious diseases, tick-borne diseases, pearls of insight, standards of care, treatment alternatives, lessons learned, lyme disease, babesia, ehrlichiaLessons Learned:  Pearls of Insight:

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