Fact Sheet

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The CDC states Lyme disease is vastly underreported, with only 10% of cases that meet its surveillance criteria being recorded.  This translates into more than 300,000 new cases of Lyme disease in the USA each year.  Lyme disease can be found world wide with over 80 countries reporting evidence of infected ticks, animals and/or humans.

Thirty three cases of Lyme disease were reported in Washington DC in 2013.  Many of these people will not be adequately treated in the early stages of the disease, if at all.  Of those treated with 2-4 weeks of antibiotics, up to 40 percent will relapse and may experience the long-lasting chronic symptoms requiring additional treatment.

Lyme Disease- Not Just a Rash and a Swollen Knee

The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite.  It is called the “great imitator,” because the symptoms can mimic lupus, arthritis, MS, fibromyalgia, dementia, ALS, ADD, chronic fatigue, Parkinson’sAlzheimer’s and even autism.

Animal studies indicate in less than a week the Lyme spirochete (Borrelia burgdorferi) can be deeply embedded inside tendons, muscles, tissues, the heart and the brain.  As the spirochetes invade tissues they replicate, then destroy their host cell as they emerge.  The cell wall can collapse around the bacterium, forming a cloaking device (or biofilm), allowing it to evade detection by many tests and by the body’s own immune system.

The Lyme disease spirochete (Bb) is pleomorphic, meaning that it can radically change form.  This protective measure allows the spirochete to hide and protect itself from the threat of the immune system and antibiotics.  Once the threat is removed, the spirochetes can change forms once again, multiply, continue to damage tissues and organs, and patients may relapse with varying symptoms.

In humans, infection with the Lyme disease bacteria can lead to early symptoms such as headaches, debilitating fatigue, fever, joint and muscle pain and possibly skin rashes.  Late stage infection can affect the central nervous system and can negatively affect the brain, heart and muscular-skeletal system. Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.  The later stages have been described in studies as being equivalent to having moderate cognitive impairment combined with a level of physical dysfunction comparable to those with congestive heart failure, and fatigue comparable to patients with multiple sclerosis.

Approximately 63% of Lyme patients in Maryland had no known tick bite and approximately half of the counted reported cases did not have the classic “bulls-eye” rash.  More than 50% had serious brain or central nervous system involvement, with many requiring hospitalization.  Over 40% of Lyme patients in near-by Maryland reported arthritic symptoms such as painful joint swelling.  When treated with less than six weeks of antibiotics, up to 40% of patients with Lyme disease continued to have symptoms, or relapsed after receiving what was once considered to be “adequate” therapy.  

A recent study (2014) by an international team of researchers indicates Lyme can be sexually transmitted.  Spirochetes that cause Lyme disease (related to syphilis) have been detected in breast milk, umbilical cords, the uterus, semen, urine, blood, the cervix, tears, the brain, and other body fluids and tissues.  Often entire families are found to be infected.

Lyme Disease Tests 

According to a study from Johns Hopkins, Lyme tests miss 75% of the people who are infected with Borrelia burgdorferi (Lyme disease).  Some medical literature indicates up to 90% of patients are missed using the current testing procedures.  

Maryland patients, for example, spent approximately $3,000,000.00 per year in the past on these inaccurate Lyme tests, with many patients leaving their doctor's office with no diagnosis and no treatment for Lyme as a result of these faulty tests.  

Outdated, Inaccurate, Insurance-Friendly Treatment Guidelines 

The outdated, highly contested Infectious Diseases Society of America (IDSA) 2006 Lyme disease treatment guidelines (favored by insurance companies) recommend that patients should have not one, but two positive Lyme tests before receiving treatment.  Insurance companies routinely use IDSA studies and its guidelines as a basis to deny reimbursement for diagnosis and treatment of Lyme disease.

CT Attorney General, Richard Blumenthal (currently US Senator), ordered a lengthy investigation of the IDSA guidelines development process and issued the results of his investigation in May 2008.  He uncovered serious flaws in the IDSA guideline development process.  Blumenthal stated in his press release, "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.”  

Due to pressure from the IDSA (some guideline authors and its editor are from Johns Hopkins) these guidelines remain in effect and are the number one reason people are suffering from a chronic phase of the illness the IDSA and Hopkins insists doesn't exist.

Ticks and The Diseases They Carry

Over 300 strains of Lyme (Bb) have been identified and the list continues to grow.  Standard tests only designed to detect exposure to one of the Borrelia (Lyme) strains.  

Over 20 strains of Babesiosis (a tick borne infection) are unable to be detected in humans using the standard blood tests; however, two strains are currently known to infect patients in growing numbers (Babesia microti and Babesia duncani- WA1).  Tests can be ordered for these strains, with one Maryland lab reporting a 4.5% infection rate in 2009.

According to the Maryland DHMH the highest number of positive tests recorded at its lab for Rocky Mountain Spotted Fever and Ehrlichiosis between 2008 and 2011 were 8.2% and 4.2 % respectively.  

More recently discovered Borrelia organisms, such as Borrelia miyamotoi and STARI (Southern Tick Associated Rash Illness) cannot be detected using current Lyme disease tests on the market.  Studies indicate these spirochetes may be found in 10-20% of ticks studied and there are other identified and unidentified microbes present in the ticks.  Researchers are advising physicians to change their approach to diagnosis and treatment of tick bites, including treating the bite immediately and adequately instead of waiting for symptoms to appear or tests to become positive.  Tests were not designed to detect antibodies to Lyme disease until 3-4 weeks after a person has been bitten by an infected tick.

Lyme diseaseBabesiosisBartonella henselae and quintana (cat scratch fever and trench fever), Rocky Mountain spotted feverRickettsia amblyommiihistoplasmosisBrucellosisehrlichiosisanaplasmosisQ-feverBorrelia miyamotoiSouthern Tick Associated Rash Illness (STARI), Tularemia (rabbit fever), Mycoplasmaleptospirosisparvo B-19 virussalmonellaMorgellons, and Masters disease are some of the various infections (some life-threatening) that may be passed to animals or humans through the bite of an infected tick or other vector.  People with chronic Lyme disease may also test positive for trichinosis and Epstein Barr virus.  

According to the CDC, deaths due to Lyme disease over the last few years are currently equal those of Rocky Mountain Spotted Fever.  

Many health care professionals are not familiar with the the growing number of infections found in ticks and other vectors; therefore, they are not testing, diagnosing, reporting or treating them.  Untreated or undertreated patients can quickly advance to late or chronic stages of the tick borne diseases.  Once reaching the chronic stage, Lyme disease and tick borne infections are more expensive, time consuming and more difficult to treat or cure.

Reports are on the rise concerning the death of people receiving donated blood that contained tick borne disease organisms.  The Red Cross admits their storage procedures do not kill the spirochetes that cause Lyme disease, nor do they kill Babesia or Bartonella organisms.  Our nation’s blood supply is not routinely tested for vector borne infectious diseases, putting many American’s at risk.

The Financial Cost to Society

The long-term cost of Lyme disease to families, school systems, the health care system and the economy is shocking.  The average diagnosis and treatment costs and lost wages related to chronic Lyme disease are $61,688.00 per year per patient for those with neurological involvement.  If arthritis symptoms occur the cost goes up an additional $34,354.00 per year. If there is cardiac involvement costs increase an additional $6,845.00 per patient.    

Mothers and fathers are losing their jobs and their homes due to the inability to work and the cost of chronic Lyme disease treatment.  Many must apply for disability after failing to get a proper diagnosis and treatment and becoming chronically ill or disabled.  Children are often unable to attend school and costs for educating them are increasing.  The federal and state government foots the bill for many of the misdiagnosed and chronic Lyme cases that slip through the current system and their numbers continue to grow at an alarming rate.

Treatment Considerations

A preponderance of the evidence indicates that active ongoing spirochetal infection is the cause of the persistent symptoms found in chronic Lyme disease patients.  Extended antibiotic treatment has been effective in improving the quality of life for many who are chronically ill.  All patients who fail to sustain lasting improvement after initial Lyme treatment should be evaluated and tested for additional tick borne diseases and treated appropriately.  

***  The above facts and figures were gleaned from reports by the CDC, FDA, NIH, International Lyme and Associated Disease Society (ILADS), Lyme Disease Association (LDA), Yale, Johns Hopkins, National Library of Medicine and the Maryland Department of Health and Mental Hygiene (DHMH).

For more information please contact Lucy Barnes-