Avoid Ticks (and Lyme Disease) This Summer

The woman was doubled over in pain, all joints swollen and stuck.  The backs of her legs were restless with rippling spasms crawling under the skin.  Her burning arms rendered sleepless nights.  Her fear of the unknown fueled her anguish.  No professionals were supplying answers.  She had nowhere to turn and did not have any idea what could be done to help her.  The pain, discomfort, hopelessness, and lack of help created a living nightmare.

Have you ever felt this way? Have you ever had a child or loved one in a similar situation?

Hundreds and thousands of people thought to be suffering with syndromes like “fibromyalgia” and “chronic fatigue syndrome” may want to know that there could be a treatable alternative.  Lyme disease is often misdiagnosed as other illnesses. (Misdiagnosing Lyme Disease, The Great Imitator by Dr. Daniel Cameron. Go to www.danielcameronmd.com.)

Here in the United States, we refer to Lyme borreliosis as “Lyme disease” because in 1975 a team of rheumatologists were summoned by desperate parents in the town of Lyme, Connecticut, where a cluster of children and adults were manifesting arthritic symptoms.  In 1981, Dr. Willie Burgdorfer finally isolated the causative organism—a spirochete-- from a tick vector; and it became known as “Borrelia burgdorferi” in the United States.  Most refer to this infection as “Lyme disease” simply because that is the name of the town in which the common thread of tick exposure was detected.

Lyme disease is the most commonly reported vector-borne disease in the U.S.  It is known to be carried and transmitted to animals and humans by certain types of ticks; infected ticks and other vectors can exist from coast to coast.  Some areas of the country are more of a hotspot than others.  The same type of tick (Ixodes pacificus) extends into Oregon and Washington. Yes, ticks are here in our area.  Due to the fact that the CDC's data only represents confirmed cases, the actual quantity of Lyme disease cases may be far greater. We estimate a minimum of 140 true cases of Lyme disease in Hood River County (www.tickcheck.com).

The following syndromes lack any known causative agent but mimic the symptoms of Lyme disease to varying degrees:

   1. Fibromyalgia (literally in Latin “muscle pain”);

   2. Chronic Fatigue syndrome, or ME/CFS;

   3. Multiple Sclerosis;

   4. Parkinson’s Disease;

   5. ALS --“Lou Gehrig’s Disease”;

   6. Crohn’s Disease;

   7. Lupus erythematosis

   8. Rheumatoid arthritis  

Many people with a positive diagnosis of Lyme disease were initially diagnosed with one or more of these other conditions and spent months or years struggling with debilitating symptoms before a correct diagnosis and suitable treatment were achieved.  For one truly infected with Lyme disease, a misdiagnosis can mask the progression of the disease and lead to a more debilitating situation and a more challenging treatment regime once a correct diagnosis is made.

My own experience is typical of many sufferers:  I probably contracted Lyme decades ago without seeing a tick or a bulls-eye rash, but only began exhibiting early-stage symptoms in 1998.  I had been a major athlete and was terrified that I lost energy and use of my body. I asked for two Lyme tests in Virginia in 1999, and three more in Oregon in 2003 & 2004.   Four came back “negative” and one was “maybe.”  From 2003 until 2005, I was misdiagnosed with “piriformis syndrome”, arthritis, “hip pain syndrome”, MS, “adhesive capsulitis”, “early onset menopause”, “depression”, and “fibromyalgia”.  One doctor actually tried to send me to a psychiatrist, a common experience for those with Lyme disease.   I was effectively bedridden by early 2005.  I was astonished and frustrated and questioned the myriad misdiagnoses – no one could give me a straight answer!  The diagnoses kept changing, and no treatment regime offered long-term relief. This is when my husband and I began to be self-advocates.  We started researching online.

One person in Hood River saved my life – not a medical doctor.  That person led me in the right direction and urged me to test again.  This time we sent my blood sample to IgeneX, one of the best Lyme-testing labs in Palo Alto, California.  In February 2005, I was finally diagnosed with Lyme disease by a California physician because there are no Lyme-treating M.D.’s in the entire State of Oregon. This time, the treatment protocol (long-term antibiotic therapy) was successful and has led to steady improvement over time. After only four months of antibiotics, I could get out of bed.  I was able to walk again. Six months later I was jogging.  My “restless leg” symptoms, cramps, spasms, convulsions, tremors, and burning had disappeared.  By December 2005, severe arthritic pain, spasms, and stiffness disappeared.  By February, 2006, fatigue disappeared.  In March, 2006, I could ski again.  By August, 2006, some cognitive capacities had returned – better comprehension and retention. (I could not read or write for two years.)  Major depression disappeared ~ I became a new person!

Lyme disease is treatable. Extended antibiotic therapy and supplements saved my life …and the lives of countless other sufferers. Looking back on my own experience following just 30 days of treatment (the standard guideline), my improvement after just 30 days was marginal and far short of my current situation. For me as for many others, long-term treatment was the key to success.  Note: the typical treatment for tuberculosis is at least 6 months of antibiotic therapy. 

Here’s what you can do:

  • If you are in a tick-infested area, examine yourself regularly and remove any ticks promptly with tweezers using a firm, steady motion – do not use Vaseline, alcohol, gasoline or heat. Do not twist or squeeze the tick as this could force pathogens into your body.

If you are bitten by a tick and can save it (e.g. in a small vial with a blade of grass), consider having it tested. Save and send the tick in for testing.  It’s much easier and significantly cheaper to test the tick than it is to test a person. An infected person may take weeks or months to test positive ‐ tests catch only about 50% of the cases. Some people infected with Lyme disease never test positive on any Lyme test.

  • If you see a bulls-eye rash around a recent tick bite, that is a given diagnosis for Lyme disease.  You don’t even need to get tested.  What to do?  Call your nearest Lyme-literate health-care provider.  Contrary to popular belief, the rash does not always look like a bulls-eye and in fact may not even occur.  It can occur about 40-60% of the time.  In the state of Oregon, a positive diagnosis for Lyme is reported to the state if a physician personally sees a rash and blood test results are positive.  

It is important to know that there is a two-tiered testing system for Lyme disease in the U.S.  “If the first tier (ELISA) is positive or unclear, a second test (Western Blot) is recommended to confirm the disease. However, the ELISA is falsely negative nearly 50% of the time. Sadly, many people are never tested beyond this point and are told they do not have Lyme disease when in fact they may be   infected.” (www.globallymealliance.org “Lyme Disease Testing”)

Lyme is treatable. To investigate further, go to www.lymedisease.org.   For testing information, you may try www.igenex.com, or www.ILADS.org.

Another great resource is www.cangetbetter.com.  It is Dr. Richard Horowitz’ site about his second book, “How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease.”

The local Mid-Columbia Lyme Disease Support Group meets virtually once a month. For questions or information on how to attend a meeting, contact Elaine Walker 541-490-4019 or Pam Ritzenthaler 541-399-4214.