LYME DISEASE FACT SHEET
The CDC officially updated its reported number of Lyme disease cases when it was proven the numbers were higher than 30,000 new cases per year. In fact, there are more than 300,000 new cases of Lyme disease just in the USA annually. Lyme disease can be found world wide with over 80 countries reporting evidence of infected ticks, animals and/or humans.
Failing To Get It Right
The Maryland Department of Health and Mental Hygiene (DHMH) reported in 2009 that a total of 5,722 reported cases of Lyme disease were never entered in the State's database. The total number of cases reported that year(2009) was only 1,466. In 2015 the numbers continue to remain low with only 1,727 cases recorded by the Maryland Department of Health and Mental Hygiene. Using the CDC 10-fold estimate of cases missed, the number of people in Maryland who got Lyme disease in 2015 was actually 17,270.
If all cases of Lyme disease were counted, Maryland would be number one in the nation with the most cases- not only in 2009, but each year thereafter, as the vast underreporting practices in Maryland continues.
Over 47 residents per day are contracting Lyme disease in Maryland. Many will not be adequately treated in the early stages of the disease, if at all. Of those treated with 2-4 weeks of antibiotics, approximately 40-60% will relapse and may experience the long-lasting, late stage, chronic symptoms requiring additional treatment and expenses.
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, multiple sclerosis (MS), fibromyalgia, dementia, ALS, ADD, depression, anxiety, sleep apnea, chronic fatigue, Parkinson’s, Alzheimer’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.
Evidence of biofilms in human tissue was recently reported (2016) by Dr. Eva Sapi, et al. Dr. Sapi also found an extract made from the stevia plant leaves killed the various forms of Lyme disease better than antibiotics, which have failed many.
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 compromise and overwhelm the central nervous system, negatively affecting 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. Chronically ill Lyme patients often experience new and worsening symptoms over the years, and a relapse can occur with a patient experiencing one or more symptoms at any given time.
The later stages of Lyme disease 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.
On average, patients with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed with some experiencing debilitating symptoms for twenty or more years before receiving a proper diagnosis. At high risk of acquiring this serious disease are children. In a study of children with Lyme disease, researchers noted an average of four doctors were seen before a proper diagnosis was made.
As many as 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 Maryland reported arthritic symptoms such as painful joint swelling.
Recent studies 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), yet Hopkins' doctors continue to rely on them to confirm a diagnosis. Some medical literature indicates up to 90% of patients are missed using the current testing procedures. With additional Borrelia strains discovered each year (none that can be detected on current tests) the number of people misdiagnosed with something other than Lyme disease are potentially much higher.
TREAT THE PATIENT- NOT THE TEST
Maryland patients spent approximately $3,000,000 per year in the past on 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. This problem brings an urgency to the need for all doctors to be properly educated on the various symptoms and presentations to ensure prompt treatment.
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, hated by good doctors and sick patients) 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 a diagnosis and reimbursement for 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.”
The Department of Human & Human Service's National Guideline Clearinghouse removed the IDSA guidelines from its list in early 2016, citing they were outdated and failed to meet minimal standards.
The IDSA has been in the process of updating its guidelines for over two years; however, in 2016 they admitted the task of bringing the guidelines up to a minimal standard set forth by the Institute of Medicine (IOM) was too difficult for them to handle and the process is now in the hands of Tuft's University. In the meantime, many last minute "fluff" articles are being pumped out by some of the guidelines authors & supporters in an apparent attempt to support their own inaccurate theories.
Ticks and The Diseases They Carry
Over 300 strains of Lyme (Bb) have been identified and the list continues to grow. Standard tests are only designed to detect exposure to one of the Borrelia (Lyme) strains. A recent study of deer ticks determined they were carrying 91 different pathogens.
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 Maryland patients in growing numbers (Babesia microti and Babesia duncani- WA1). Tests can be ordered for these strains at speciality labs, 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 (Lyme) 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 can be found in more than 50% of ticks studied on the DelMarVa peninsula 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. www.TreatTheBite.com
Standard Lyme tests were not designed to detect antibodies to Lyme disease until 3-4 weeks after a person was bitten by an infected tick, so they are useless for approximately one month after the initial tick exposure and not much better after that time period.
Lyme disease, Babesiosis, Bartonella henselae and quintana (cat scratch fever and trench fever), Rocky Mountain spotted fever, Rickettsia amblyommii, histoplasmosis, Brucellosis, ehrlichiosis, anaplasmosis, Q-fever, Borrelia miyamotoi, Southern Tick Associated Rash Illness (STARI), Tularemia (rabbit fever), Mycoplasma, leptospirosis, parvo B-19 virus, salmonella, Morgellons, 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 are equal to those of Rocky Mountain Spotted Fever. The old myth that one dose of Doxycycline (antibiotic) will cure Lyme disease in the early stages has been disproven and should not be considered affective therapy. A one page handout with the current treatment recommendations for those experiencing a tick bite can be found here. It should be printed out and taken to your doctor's office with you.
Reports are on the rise concerning the death of people receiving donated blood containing 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 most vector borne infectious diseases, putting many American’s at risk. The practice of testing donated blood for Babesiosis is beginning in some regions of the country as of early 2016.
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 illness, 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.
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- AfterTheBite@gmail.com
Last updated- February 2019