Hudson Resident Spearheads Lyme Disease Investigation

July 10, 2015

 

by Rhiannon Snide

Unresolved fatigue and unexplainable neurological problems haunted Hudson resident, Carl Tuttle, for 12 years before he became one of the 300,000 people diagnosed with Lyme disease in the United States every year.  The disease is transmitted through tick bites and can be transmitted in less than 24 hours.  According to the Center for Disease Control and Prevention (CDC) “Lyme disease is the most commonly reported vector borne illness in the United States,” and while the disease is so commonly diagnosed it “does not occur nationwide and is concentrated heavily in the northeast and upper Midwest.”  This places New Hampshire directly in the center of a high-risk Lyme disease area.  A NH tick study conducted by UMass Amherst that 77 percent of ticks in the Litchfield, New Hampshire area carry the disease.

Mr. Tuttle reaped the negative effects of the disease for 12 years before finding a cause to his sudden illness.  Do to the prolonged exposure to the bacteria without proper treatment, Tuttle now tests positive for the Epstein-Barr virus.  “Lyme undiagnosed or untreated for an extended period of time can reactivate the Epstein-Barr virus in an individual that harbors the virus already” Tuttle explained.  In Tuttle’s case the virus causes severe fatigue.  He commented “People may see me walking the street to the local pond and think I am well, but they don’t see me while I’m on the couch sick, it can be a few hours every day and until that is actually resolved I haven’t had the energy to work full time.”  This chronic fatigue was just one of the symptoms that caused Tuttle to leave his 25 year career as a sales executive for a national reseller of Sun Microsystems servers and software.  For seven months Tuttle was placed on  high dose IV antibiotics and after his diagnosis in 2008 he was bedridden and put on oxygen.  The most devastating effect he faced was his loss of verbal fluency.  Public speaking was a large contributor to the success of Tuttle’s career, and his neurological problems stripped all confidence he had built up throughout the years.  “I was forgetting the names of my co-workers that I had worked with for 25 years, I didn’t know where I was on my commute home, and was being tested for early Alzheimer’s disease” he commented.

Between Mr. Tuttle, his wife, Janet, and daughter, Erika, who both also have been diagnosed with Lyme disease, an excess of $100,000 has been spent on treatment plans.  Erika now tests positive for the Epstein-Barr virus as well.  She went about four years without proper treatment or diagnosis of the disease, which ultimately caused her to develop an Attention Deficit Disorder.  The disorder forced her to miss a semester at college so she could take high dose antibiotics; she now is prescribed stimulants to help control her condition.

Janet’s Lyme disease left her with no neurological problems, but after six years without proper treatment she developed severe joint pain in her knees.  Carl Tuttle explained “she could barely walk up stairs without excruciating pains, it got to the point where we were discussing knee replacement surgery.”  Luckily, after three years of antibiotics the joint pain resolved and she has gone six months without any residual effects.

The variations of Lyme disease symptoms within the Tuttle family alone was enough for Carl to realize that something was off about how the disease is being dealt with by the medical community.  After years of research, he has decided to spearhead a congressional investigation of the CDC, Infectious Diseases Society of America (IDSA) and American Lyme Disease Foundation (ALDF).  So far Tuttle has created a petition on Change.org that has collected over 28,500 signatures in the last two years alone.  Each signature provides a comment explaining how Lyme disease has affected the petitioner.

Tuttle explained some of the flaws within the standard treatment plans for Lyme disease “We’re not even sure the standard treatment guideline is ideal for Lyme; Johns Hopkins conducted a study and 36 percent of acute Lyme patients developed additional symptoms after they stopped the treatment plan.”

While the disease can be diagnosed clinically, blood tests are the preferred form of diagnoses.  Antibodies toward Lyme disease do not develop for four to six weeks after the initial bite test results are often negative and patients are told they do not have Lyme disease.  “The biggest problem we have today is there is no way to gauge treatment failure or success so we don’t know if we have gotten Lyme out of the system.”  The antibodies that develop after Lyme is contracted may remain in a person’s system for years after the disease is eradicated, this leaves doctors with very little concrete information as to how persistent the disease is in most cases.

The CDC refuses to recognize the “Inadequate treatment, inadequate testing, and inadequate classification of the disease” that is causing so many cases to go unreported and thus cause irreversible damage to those infected.

Tuttle has spoken with representatives from both the State House and Washington, D.C. to initiate the investigation.  He believes the lack of recognition and responsibility for the mistreatment, and diagnoses of Lyme by the CDC can only be stopped if brought to a national level.  For more information on Lyme disease Carl Tuttle recommends visiting the International Lyme and Associated Diseases Society website:  http://www.ilads.org.