The CDC states Lyme disease is vastly underreported, with only 10% of cases that meet its surveillance criteria 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.
IF YOU DON'T LOOK FOR IT, YOU WON'T FIND IT!
The Florida Department of Health reports that between 2002 and 2011 only 23% of its Lyme cases were acquired in Florida, and 77% were acquired while the person was traveling in another state or country. Although these statistics are far from accurate, they are a slight improvement over the once promoted claim "there is no Lyme disease in Florida". This inaccurate portrayal of the situation caused residents to be misdiagnosed, which led to the unsuspecting becoming chronically ill and disabled, while some, unfortunately, died.
Of the tick borne infections acquired in Florida, the majority, according to the Florida DOH, were reported from counties in the northern and central regions of the state. This region has a number of dedicated volunteers working hard to educate the public and health care professionals in spite of the Florida Department of Health's claim Lyme was not of concern. The more education and awareness efforts, the more people typically are diagnosed.
Between 1990 to 2012 approximately 12,730 new cases (using the CDC's 10-fold figures) of Lyme disease were reported, making Florida one of the Top 20 States with the most cases of Lyme disease in the USA. Unlike some geographical locations, due to the mild winters in the south, Lyme disease cases are typically reported in Florida year-round.
More than 3 people every day are contracting Lyme disease in Florida. Many will not be adequately treated in the early stages, if at all. Of those treated with 2-4 weeks of antibiotics (the current, but inadequate recommendations published by a handful of infectious disease doctors and supported by insurance companies), up to 40% of those people 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’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 spirochetes to hide and protect themselves from the threat of a persons own immune system and antibiotics. Once the threat is removed (antibiotics are stopped, for example), the spirochetes can change forms once again, multiply, continue to damage tissues and organs, and patients may relapse, experiencing 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. Later 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 experiencing moderate cognitive impairment combined with a level of physical dysfunction similar to patients with congestive heart failure, and fatigue comparable to patients with multiple sclerosis.
On average, patients with chronic Lyme disease demonstrated symptoms for 1.2 years before being correctly diagnosed, with some patients suffering with debilitating symptoms for ten or more years before receiving a proper diagnosis. At the highest risk of acquiring Lyme disease are children. In a study of children with Lyme disease, researchers noted that an average of four doctors were seen before a proper diagnosis was made.
As many as half of the cases of Lyme disease report having no known tick bite or the classic “bulls-eye” rash. In one report more than 50% of patients developed serious brain or central nervous system involvement, many requiring hospitalization. Over 40% of Lyme patients have reported arthritic symptoms, such as painful joint swelling.
The latest study (2014) by an international team of researchers indicates once again that 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. This is one reason those experienced with treating chronically ill Lyme patients say- "forget the test, treat the patient".
Outdated, Inaccurate, Insurance-Friendly Treatment Guidelines
The seriously 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 guidelines as a basis to deny reimbursement for diagnosis and treatment of Lyme disease.
CT Attorney General, Richard Blumenthal (currently a US Senator), ordered a lengthy investigation of the IDSA guidelines development process and issued the results 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 that 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 detect exposure to ONE of the Borrelia (Lyme) strains.
Over 20 strains of Babesia (a tick borne infection) are unable to be detected in humans using 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 both of these strains.
The Florida Department of Health states: "Babesiosis is not considered a significant human health issue in Florida. However, it is important to be aware of the disease as human cases continue to be diagnosed in northeastern states. Babesiosis is not currently a reportable disease in Florida." Again, if you don't look for it, you won't find it.
As for Rocky Mountain Spotted Fever, according to the Florida DOH: "In Florida, the reported incidence has increased markedly in recent years, possibly to increased disease awareness and reporting. 163 cases of RMSF were reported from 2002 through 2011. Of these, 77% were acquired in Florida and the rest were acquired while the person was traveling in another state or country. Of the infections acquired in Florida, the majority were reported from counties in the northern and central regions of the state [again, where volunteer support groups are educating the public]. In Florida, cases of RMSF/SFR are reported year-round without distinct seasonality, though peak transmission typically occurs during the summer months."
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. Lab tests were not designed to detect antibodies to Lyme disease until 30 or more days after a person has been bitten by an infected tick.
The Florida Department of Health states: "STARI has been discovered in Florida and research on the occurrence of the disease is underway. A recent study has suggested that some STARI cases in the southern US may be attributable to previously undetected B. burgdorferi sensu lato. However, it may take some time before all the necessary information can be collected since much is still unknown about STARI."
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 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 all 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 and 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. If there is cardiac involvement the 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 in the early stages and becoming, as a result, chronically ill and disabled. Children are often unable to attend school and costs for educating them are increasing. Using your tax dollars, the federal and state government foots the bill for many of the misdiagnosed and chronic Lyme cases, a responsibility insurers purposely fail to acknowledge thanks to the Infectious Diseases Society of America.
A preponderance of the evidence indicates 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 re-evaluated and tested for additional tick borne diseases, then treated appropriately. The most current recommended Lyme and tick borne disease treatment guidelines can be found here. https://sites.google.com/site/marylandlyme/tick-borne-diseases
*** 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, Florida Department of Health and the Maryland Department of Health and Mental Hygiene (DHMH).
For more information please contact Lucy Barnes- AfterTheBite@gmail.com