- Diseases, Disorders & Conditions
Lyme Disease: Hidden Epidemic of Arkansas
"..........In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease.........." Dr. Kenneth Liegner.
Is There Lyme Disease in Arkansas?
The topic of whether Lyme Disease actually exists in the state of Arkansas is a matter that's become controversial, especially in the past decade. According to University of Arkansas' Division of Agriculture, "Rocky Mountain spotted fever, ehrlichiosis, tularemia and Lyme disease are reported nearly every year in Arkansas" (see 'Tick Borne Diseases in Arkansas')
Looking at the Arkansas State Health Department's statistics, one would assume there have been no cases of Lyme disease. But how accurate is this reporting method? And why does Arkansas, specifically, omit reported Lyme from the chart? Does this merely mean there's been no reported cases since then or have cases of the disease in the United States dropped sharply in the last decade?
Let's take a look at the national statistics from the Center for Disease Control. 'Confirmed cases' of Lyme Disease in the U.S. rose from 17,029 in 2001 and peaked at nearly 30,000 in 2009. 'Confirmed cases' are backed up by either a positive Lyme test (by CDC standards) or manifestation of the bulls-eye rash. At one time, the CDC voiced concern that for every confirmed case of Lyme, there are ten times as many unconfirmed cases, not to mention the numbers of instances when the disease is not recognized at all. The CDC has only recently admitted that the actual number of Lyme Disease cases is in excess of 300,000 per year; not counting the thousands of misdiagnosed cases!
Lyme Disease Cases Have Risen, Nationwide!
Lyme Disease cases, overall, have increased in the last decade, not decreased, as it's been reported by Arkansas. Why, then, would Lyme Disease cases drop sharply for Arkansas, yet rise elsewhere? Did the ticks carrying the borrelia bacteria simply pack their bags and go across the state line?
Reported Lyme disease cases in Arkansas were much higher from 1994-2001 (statistics supplied by ADH), peaking at 27 confirmed cases in 1996 & 1997. In fact, the Department of the Army's Center for Health Promotion & Preventative Medicince performed a Lyme Disease risk assessment in 1995 (see here). The study found that "the risk of contracting LD at LRAFB is presently moderate to high, this conclusion is based on the results of the survey combined with information from the Arkansas Department of Health (ADH) regarding human case reports and LD vector tick collection records from sites relatively near LRAFB".
No confirmed cases of Lyme Disease have been reported by the Arkansas Department of Health since 2007.
To answer the question "have Lyme Disease cases dropped sharply (nationwide) in the last decade?": NO. The answer takes us back to our original question of "is there Lyme Disease in Arkansas?": Absolutely YES.
The Problem With Testing & Reporting Methods For Lyme Disease
Arkansas, like other states, uses the same testing process: The Elisa and the Western Blot This is, perhaps, the number one reason for the inaccurate discrepancy in reporting Lyme cases. There are over 100 peer reviewed journals demonstrating that the tests for Lyme disease and other spirochetal infections can be falsely negative. In fact, this is possible when all clinical symptoms are present. The CDC once stated that the testing procedure was developed for Surveillance purposes and was not intended to be used to diagnose the disease, relaying that Lyme Disease is a clinical diagnosis based on symptoms and physician assessment.
Second, it appears that Arkansas and other southern healthcare practitioners are not being educated and informed to look for the disease in their state; alluding to the repeated statement "there is no Lyme here", which couldn't be further from the truth. The result is that patients are diagnosed with some other ailment like Fibromyalgia, Chronic Fatigue syndrome or Lupus. In the matter of Arkansas, some individuals have reported that that their physician won't even test them for the Lyme bacteria (see 'My Letter to Representatives in Arkansas comments) or the doctor gives them the most common tick borne disease diagnosis in the state: Rocky Mountain Spotted Fever (RMSF). While verified cases of RMSF in the state of Arkansas are on the rise, this could account for the reduction of reportable Lyme cases in the state; possibly misdiagnosing as RMSF.
In addition, Lyme Disease reporting methods appear to be different for southern states, compared to our northeastern counterparts. According to the Georgia Lyme Disease Association, " the states we checked, COMPLETELY different reporting practices were used, much different than those employed in the Northeastern United States! And, apparently federal officials are fully aware of this, but somehow, they fail to note these incredibly significant discrepancies on the National Case Map." (see Undisclosed Flaws in CDC National Lyme Disease Case Map Limit Chances of Early Diagnosis and Treatment for Southern Patients).
Read the full story of the southern Lyme connection at these links:
- Rebel with a Cause: The Incredible Dr. Masters, Part 1 | Psychology Today
The story behind Edwin J. Masters, the doctor involved in hand-to-hand combat with the Centers for Disease Control over the existence of Lyme disease in the southern United States.
- Rebel with a Cause: The Incredible Dr. Masters, Part II | Psychology Today
"Ed Masters' story sheds light not only on Lyme disease but also the dangers we all face when medicine is politicized and studies skewed. His great persistence finally led to recognition of Masters' disease, the Lyme of the south." Pamela Weintraub
Are Lyme, Master's Disease & STARI Related?
In 1988, Dr. Edwin Masters of Missouri began to see several patients that met the clinicial definition criteria for Lyme Disease. Because there were variations and differences in the agents and microbiologic makeup of the southern version of the disease, it was referred to as 'Lyme-like Illness' and, later, 'Master's Disease'. Others prefered to give the illness the label of STARI, Southern Tick Associated Illness. In spite of the evidence presented, Dr. Masters was continually denied acknowledgment that the disease was present in Missouri ticks. With his colleagues, Dr. Masters proved the denials to be in error. Even with Dr. Master's findings, the struggle has continued to convince acceptance of the southern version of the illness as Lyme. This most certainly proves that the southern areas affected by STARI or Master's Disease would positively include the state of Arkansas. So why the denial?
- ArkansasLyme : Arkansas Online Lyme Support
Arkansas Online Lyme Support is a virtual meeting place and source for information and emotional support for people with Lyme and other tick-borne diseases living in Arkansas. It is sponsored by LymeDiseease.org leading national patient advocacy.
Is Arkansas the State of Denial?
Why would a state continually deny the existence of this one disease, yet acknowledge and accept all other tick borne diseases? What's at the root of this blatant denial? There could be several explanations:
1. Reluctance of state officials: Examples: An anonymous source stated that when calling the AR state health department to report the case, they were told they would rather not, because AR is the natural state and it's economy is based on people coming to hike, float the Buffalo River, and enjoy outdoor activities, so they don't like to report such things. Still another shares that when they asked a medical professional why there was such a stigma asociated with Lyme, they were told that when the first cases were reported in Missouri, that one of the first statements from someone in the state government was that “this will really hurt tourism". Finally, another person reports they tested positive for Lyme and RMSF and received a call from the ARDH asking questions about the RMSF. When asked if they were going to inquire about Lyme, the person was told they (ARDH) don’t collect statistics on Lyme disease because the ticks in AR don’t carry Lyme.
2. Doctor's aren't reporting their finding to ARDH: Examples: Another source shares that he had Lyme Disease and even with a positive test, he was still told (by his doctor) that he did not have Lyme (when the Lyme panel was positive) He states the doctor recanted the original diagnosis, which led the patient to believe that the doctor either didn't send anything to ARDH or CDC, or was pressured by the ARDH to recant so they didn’t have to report anything.
3. Healthcare Practioner's Refusal to test for the disease: Example: A woman states that she had this issue with her child but was denied testing for the disease, declaring that UAMS and Arkansas Children’s Hospital denied the disease in the state. Neither hospital would test for it. She stated she has a letter from Arkansas Health Department that Arkansas has no Lyme. Still another patient was told, after the doctor reviewed the Lab results from a different lab he told her she did not have Lyme and the lab company was not reputable. She asked him to do his own test & he said “NO, Arkansas has no Lyme”.
4. Ineffective testing: As mentioned above, the testing for Lyme disease is inaccurate and was never meant as a diagnostic tool.
With all these possible explanations, testimonials, and the repeated instances of bold refusal to even consider that Lyme Disease definitely exists in Arkansas, we still don't know why it has been continually denied to exist in this state.
Other Tick Borne Diseases In Arkansas
Other tick borne diseases are on the rise in Arkansas. Cases of Ehrlichiosis, Rocky Mountain Spotted Fever and Tularemia have jumped sky high since 1994. Why, then, has Lyme dropped to zero? It doesn't take a person with a high IQ to ascertain that if other tick borne diseases are increasing, all vector borne diseases would be escalating, as the national statistics prove.
Rashes From Tick Borne Diseases in Arkansas.
At right you will see various photos of rashes on individuals in the state of Arkansas. I'm adding their actual accounts.
"I am enclosing pictures of the rash I got, and I still get this rash. These pictures are not at the site of the bite (or the tick I recalled pulling off) but I never had ANYTHING like this on my body until I was positive for Lyme. My pcp confirmed this is NOT ecxema, or psoriasis (sp) which my youngest son has.en these spots occur, they always occur when I am having a relapse or am very symptomatic, they slowly fade."
"There was some central clearing that was more visible than what this picture shows. The rash was about 3 inches at its widest part. The first doctor saw it and immediately started writing a script. He said Lyme disease is not something to take lightly and he wanted me treated immediately. . .I have several young friends that are physicians ranging in age from 30 to 40 and they have all been shocked when I said I got it here. They respond with "but Lyme doesn't exist in Arkansas." ............"
"The bump appeared & it was about 4 weeks after being bitten. It felt hot to the touch, but wasn't sore. I eventually opened it up after it turned purple. It bled I soaked it in Epsom salt daily until it cleared up. The tick didn't bite me there, either. The tick bites were in the groin area. My doctor couldn't really say it was a bulls eye, but he couldn't say it wasn't related to the tick bites, either. My sister & brother took one look at the red bump and saw how bad I felt & said "I bet that's Lyme."
Arkansas's Hidden Epidemic
The average individual may not have the scientific knowledge or microbiology degree to prove, without a shadow of doubt, that Lyme Disease exists in Arkansas. The proof is already evident in the personal narratives and accounts from people in the state who all have similar experiences, the bulls eye rashes, and the numbers of clinical diagnosis' that have not been reported. The misdiagnosis, denial, and refusal to "look outside the box" are affecting residents daily. Individuals from all over the state are seeking help from the best hospitals in Arkansas, yet they are being told "Lyme does not exist in Arkansas."
The Lyme community finds it necessary to become it's own subculture to support each other, make referrals for care, suggest alternative treatments and warn others about the danger of the disease. For the past two years, individuals from across the country have joined together in Washington DC for a national day of Awareness. Protests have risen against the current IDSA treatment guidelines for Lyme Disease, as people realize it's simply not adequate protocol and appears to fail in most cases. Awareness has grown internationally. Recently, Australia has joined ranks with the movement. France and Germany united on September 15, 2012 for a national day of protest, demanding attention to the existence of the disease, the plea for unbiased education for doctors and to unify the effort for activism and attention. The fact that concern for recognition and attention to the issue of Lyme Disease has spread worldwide attests to the urgency for understanding and change.
So, you see, the ignorance and denial of Lyme Disease, STARI, Masters Disease, or whatever else you want to call it, exists everywhere, not only in Arkansas. Nothing will ever change as long as we continue to do the same thing, over and over. Perhaps the time has come to ask ourselves this question: What are we going to do about it?
Trailer for 'Under Our Skin'
Watch "Under Our Skin", the true story of the Lyme epidemic, for free on Hulu
- Under Our Skin: Movie Documentary
In the 1970s, a mysterious and deadly illness began infecting children in a small town in Connecticut. Today it's a global epidemic. A real-life thriller, this shocking festival hit exposes the controversy surrounding chronic Lyme disease.
- Personal Accounts from Arkansas Individuals
Postings from people from all over the state who have Lyme disease and very similar stories.
Other Suggested Reading and/or Links:
- ILADS - Lyme Disease Educational Videos, Lyme Disease Conferences, and LymeWall
ILADS - professionals share their knowledge of the management of Lyme disease, Babesia, Erlichia, Bartonella and other lyme associated diseases. Lyme Disease Educational Videos, Lyme Disease International Conferences, and LymeWall.
- LymeDisease.org - central voice for Lyme disease and all tick-borne disease issues
LymeDisease.org) is a non-profit corporation acting as the central voice for Lyme disease and all tick-borne disease issues.
- Arkansas Department of Health
- Centers for Disease Control and Prevention
CDC Centers for Disease Control and Prevention - Your Online Source for Credible Health Information
- The Hushed Truth About Lyme Disease: A Lyme Disease Recovery Story, Part 1
Amidst the storm of controversy over Lyme Disease, there remains the truth: it's not easily curable. This story shares my chronicle of hope. It's the first section in my narrative battle with Lyme Disease.
- The Lyme Disease Controversy: Information, Links, and Help
Learn Lyme disease facts and disturbing information regarding the spread and prevalence of the disease in the US. Participate in poll to determine where cases are coming from. The information will shock you.