A Human Feast
March 28th, 2007
New Science, Divided Doctors and The Alarming Implications For Lyme Disease
By Todd Morehead
New Science, Divided Doctors and The Alarming Implications For Lyme Disease
By Todd Morehead
A couple of years ago Tallahassee, Florida police responded to reports of a disoriented man wandering half naked in front of an apartment complex who was clambering atop parked cars and menacing traffic. When they arrived on the scene they found the man, Wyatt Sexton, star quarterback at Florida State University, talking aloud to himself and doing push ups on the sidewalk. As officers approached Sexton he reportedly seemed dazed, declaring, “I am God,” before he became violent and ultimately had to be subdued with pepper spray. In the weeks that followed it was discovered that drugs, alcohol or a preexisting mental condition didn’t cause Sexton’s incident. He was suffering—unbeknownst to himself or his regular physician—the effects of late-stage Lyme disease.
According the Centers for Disease Control (CDC) the number of reported cases of Lyme disease, also called Lyme borreliosis, doubles in South Carolina every decade. The disease is often difficult to diagnose, symptoms vary wildly among patients and the medical community is split on effective means of treatment despite the rigid treatment protocols set forth by the CDC. As the number of cases continues to rise so too do the number of published scientific research reports about the nature of the disease and specifically the seemingly indestructible bacterium behind it all. Yet, these reports are largely left to languish in obscure medical research journals and seem, to many in the medical field, to be brushed aside by the CDC. Meanwhile, patient advocates say, thousands of people continue to suffer ineffective treatment while thousands more may be suffering from the disease without having been properly diagnosed.
Borrelia burgdorferi, the bacterium responsible for Lyme disease, is a nasty little corkscrew-shaped microorganism called a spirochete, which is transferred to humans primarily through tick bites. Many believe that the bacterium is transferred through other insects as well though so far the CDC has been hesitant to conclude that for certain. Like its cousin, Treponema pallidum, which is spread through sexual contact and causes syphilis, B. burgdorferi uses a twisting motion, like a screw, to bore through viscous tissue and attack virtually any part of the human body.
In 2001, according to The Journal of Clinical Microbiology, professors from Georgia Southern University, the University of North Florida, and researchers from the U.S. Army isolated 56 different strains of B. burgdorferi in the southern United States. They concluded that B. burgdorferi is actually part of a complex genospecies of similar spirochetes that can interbreed. According to the report, seven different strains were cultured from ticks, cotton mice, cotton rats and wood rats in South Carolina and Florida alone. A strain similar to the B. bissettii genospecies found in South Carolina has been isolated from ill patients in Europe.
For starters, Lyme borreliosis can attack the brain, nervous system, joints, the heart, the G.I. system, or the urinary tract and the strain on the immune system can cause other sicknesses to manifest more easily. It can entrench itself deeply within tissue, often beyond the reach of antibiotics, can migrate with impunity and cause multi-system illness that is often baffling to physicians. As a result, many sufferers of Lyme disease are often misdiagnosed with other diseases such as multiple sclerosis, lupus, rheumatoid arthritis, or psychiatric disorders.
According to some doctors, if it’s not caught early, it can be almost impossible to eradicate. According to others in the medical field, a simple round of antibiotics will clear it right up. But more on that debate later.
Regardless of the debate over the chronicity of the disease and its methods of treatment, recent data shows that the number of Americans infected by B. burgdorferi is on the rise.
Thomas Parkman, president of the Lyme Disease Network of South Carolina, worries that many in South Carolina’s medical establishment may be unwittingly downplaying the severity of what many would consider a Lyme disease epidemic in South Carolina due to inefficiencies in reporting cases of the disease, tracking the spread of disease vectors such as black-legged ticks and policies of following what he believes to be outdated scientific data.
“We have a systematic policy of denying its existence in the state,” says Parkman. “We have people dying in this state from Lyme disease and the whole thing is being ignored.”
The CDC Web site states that, “a county in which Lyme disease is endemic is one in which at least two confirmed cases have been previously acquired or in which established populations of a known tick vector are infected with B. burgdorferi.”
According to the CDC, there were 130 cases of Lyme disease reported in South Carolina between 2000 and 2006, more than the number of cases reported in the 1980s and 1990s combined. And the number of reported cases appears to be doubling each decade, the key phrase being reported cases.
“Surveillance for LD [Lyme disease] is subject to several limitations,” stated a recent CDC study. “Studies from the early 1990s suggested that LD cases were underreported by six to 12-fold in some areas where LD is endemic.”
If the cases in South Carolina are underreported 12-fold, as suggested by the CDC, then the total number of actual infections could be closer 1,560.
Public misconceptions about the transfer of Lyme disease
As borreliosis infections continue to rise in the state, many public misconceptions about the disease still linger. For instance, deer are often associated with the disease because the main B. burgdorferi vector, the black-legged tick, is commonly called the “deer tick.” It is still labeled “deer tick” on the S.C. Department of Health and Environmental Control’s Lyme disease fact sheet. Yet, deer are rarely infected with the Lyme spirochete. The only role they play is in the transportation of the tick.
In 1991, the Southeastern Cooperative Wildlife Disease Study (SCWDS) at the University of Georgia attempted to infect five whitetail deer with B. burgdorferi by injecting them with a dose of “approximately 20 million” spirochetes per animal. While only one of the deer showed a minor infection of the bacterium in its ear, they easily recovered the spirochete from various tissues in the hamsters they used as a control group.
“The possibility that deer are important in passing infection to feeding ticks appears unlikely,” a transcript of the study states.
A SCWDS study from 1993 states, “Research has shown that deer are only indirectly important in Lyme disease by serving as hosts for adult ticks … Many wild mammals, birds, and even reptiles also are involved in the tick’s life cycle, and wild mammals other than deer, especially rodents, are vertebrate reservoirs of B. burgdorferi.”
The ratio of Lyme borreliosis infection in relation to deer population in South Carolina quantifies the SCWDS findings. In stark contrast to the increase in reported cases of Lyme disease, the S.C. Department of Natural Resources (DNR) reports a decline in the deer population in recent years.
“The deer population maxed out in the 1990s,” says Charles Ruth with the SC DNR Deer and Turkey Project. “Since that time there has been a 20 to 25 percent decline in deer numbers statewide.”
With birds and most other mammals considered primary hosts for the black-legged tick and with urban sprawl placing more people into newly developed rural habitats, many are misinformed by the notion that Lyme disease primarily afflicts hunters and outdoorsmen.
The hotly contested Lyme disease treatment guidelines from the Infectious Diseases Society of America (IDSA) so far only implicate ticks as transmitters of the disease, though some researchers in the field now disagree that ticks are the sole vectors.
Data now exists that implicates other possible carriers like fleas and mites. In 1998 a study in the Czech Republic claims to have isolated a genospecies of the burgdorferi spirochete, B. afzelii, from a mosquito. B. afzelii, like other burgdorferi offshoots, is a human pathogen and also causes the infamous bulls eye rash typically associated with Lyme disease.
A few researchers believe that B. burgdorferi may also be both congenitally and sexually transmitted. Tessa D. Gardner, M.D., of Washington University School of Medicine conducted extensive research and found evidence that B. burgdorferi was transmitted from mother to fetus. Neonates often showed symptoms of Lyme disease, though she found that cases of congenital borreliosis transfer are relatively rare, estimated at around 40 cases per year in the United States.
The Lyme spirochete has also been found in human sperm, though no viable research has yet been done to prove that Lyme disease is sexually transmitted. However, there has also been no viable research to prove that it is not.
The CDC disregards congenital, gestational, or sexual transfer cases.
Are they sick or crazy? What the new science indicates
Two camps have formed in the medical community over Lyme disease. On one side are the self-proclaimed “Lyme literate” doctors, who disagree with the IDSA treatment guidelines and believe that long-term treatment is needed to fight the disease. On the other side are those who follow the prescribed methods put forth by the IDSA and the American Medical Association, who disbelieve in the existence of a long-term, chronic form of Lyme borreliosis.
Yale University professor, Stephen Malawista, M.D., and research fellow Allen C. Steere, M.D., identified the disease in 1975 after mothers in Lyme, Connecticut, insisting that an infectious agent was responsible for the arthritic swelling of their children’s joints, spurred their research. Yale maintains that Dr. Malawista proved a brief dose of antibiotics will almost always cure the disease in its early stages and are usually effective in later stages as well.
Six years later, in 1981, Dr. Willy Burgdorfer discovered the spirochete associated with the disease. But, the scientific community’s treatment guidelines remained the same.
Many sufferers of the disease, like Thomas Parkman, worry that a few in the medical industry have managed to dictate policy to the majority of health care organizations through a closed process that rejects dissenting views and theories. As a result, say sufferers, the majority of the medical industry follows the lead of the seemingly one-sided process, often at the cost of their patients.
“Here you have an explanation of Lyme that came out in 1975 that is completely erroneous,” Parkman says. “There is a whole body of research which refutes it and these people have ignored it.”
Mainstream doctors, on the other hand, are concerned that a few “quacks” are misleading the general public.
In 2000, the Journal of the American Medical Association published the results of a study of the long-term outcomes of patients with Lyme disease, which was conducted by a group of researchers from the Yale University School of Medicine. Studying 678 patients from a random sample of reported cases in Connecticut between 1984 and 1991 against 212 age-matched persons without the disease, the researchers claim to have found that even though the Lyme patients reported increased symptoms (fatigue, arthritis, etc) years after diagnosis, the frequencies of these reports “were similar to the frequencies of such reports among age-matched controls without Lyme disease.”
Could some people who believe they are suffering the prolonged effects of Lyme disease actually be suffering from other more common ailments? Leonard Sigal, a researcher in the Lyme Disease Center at Robert Wood Johnson Medical School, chalked up chronic Lyme disease symptoms to simple hysteria and media hype in a 2002 issue of Environmental Health Perspectives.
“Because of confusion over conflicting reports, anxiety related to vulnerability to disease, and sensationalized and inaccurate lay media coverage, a new syndrome, ‘chronic Lyme disease,’ has become established,” Sigal writes. “Chronic Lyme disease is the most recent in a continuing series of ‘medically unexplained symptoms’ syndromes. These syndromes… meet the need for a societally and morally acceptable explanation for ill-defined symptoms in the absence of objective physical and laboratory findings.”
Another research team from the Long Island Jewish Medical Center took it one step further by claiming those who believe they suffer prolonged Lyme disease symptoms must instead be suffering from a mental disorder. “…[T]raumatic psychological experiences predating onset of Lyme disease symptoms may play an important etiologic role in the chronicity of these symptoms,” they concluded. But not all scientific researchers believe that people who claim to suffer chronic Lyme disease have a preexisting mental disorder or have fallen victim to media hype.
In 2002, researchers from the Department of Parasitology at Tulane University found that the spirochete B. burgdorferi uses an immune system evasion mechanism. After they inoculated Lyme-infected lab rats, an antibody developed to attack the spirochetes’ OspC transcript (the outer-surface protein C gene). In response, some of the spirochetes simply “turned off” the OspC gene and thus became invisible to the antibodies. When those spirochetes were isolated and injected back into healthy non-inoculated rats, the OspC genes reappeared. They postulate that what they witnessed is “an immune evasion mechanism that contributes to spirochetal persistence.”
In effect, antibiotics might not be curing the disease after all.
There are other evasion mechanisms, as well. In response to penicillin researchers have documented B. burgdorferi spirochetes coiling themselves into balls, coating themselves with an outer mucous membrane, and forming cyst-like encasement structures that were impenetrable by the antibiotics. Once the threat passed, the spirochetes reconverted to their spiral forms. Some have been observed making the transformation from spirochete to cyst in as little as 15 fifteen minutes.
B. burgdorferi can also break itself apart into separate spore-like “granules” in adverse conditions. When conditions improve for the spirochete, the granules, like individual beads on a necklace, reattach themselves to reform the full spirochete.
The highly esteemed medical journal, The Lancet, published a report that stated, “…the immune evasion strategy used by B. burgdorferi is similar to strategies used by the mycobacterial agents that cause chronic infections such as tuberculosis or leprosy.”
In fact the Lyme spirochete is so vexing and seemingly indestructible, the U.S. government considers it a possible bioterrorism agent.
According to the CBS News affiliate, KWTX, in Waco, Texas, the University of Texas at San Antonio recently opened a new research lab for bioterrorism.
“There,” according to the report, “researchers will study such diseases as anthrax, tularemia, cholera, Lyme disease, desert valley fever and other parasitic and fungal diseases. The U.S. Centers for Disease Control and Prevention identified these diseases as potential bioterrorism agents.”
Though the U.S. Centers for Disease Control possibly consider the Lyme spirochete a potential bioterrorism agent, the CDC Web site states, “Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics.”
Questionable diagnosis and treatment
It should be clarified that a clinical diagnosis is made for the purpose of treating an individual patient and attending doctors consider the many details associated with that particular patient’s illness. By contrast, surveillance case definitions are created for the purpose of standardization, not patient care; they exist so that health officials can reasonably compare the number and distribution of cases over space and time.
Paul Mead, an epidemiologist with the CDC, addressing the Connecticut Department of Public Health and the Connecticut Attorney General’s Office in January 2004 warned, “no surveillance case definition is 100 percent accurate. There will always be some patients with Lyme disease whose illness does not meet the national surveillance case definition … Given other compelling evidence, a physician may choose to treat a patient for Lyme disease when their condition does not meet the case definition.”
The CDC case definition for Lyme disease also warns, “This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.”
Many Lyme literate supporters are baffled that with one hand the CDC urges physicians to use their own clinical judgment when diagnosing potential Lyme cases, yet on the other it gives specific, some say “dogmatic,” directions on how to treat it.
So far, according to the CDC, the most reliable way to isolate B. borgdorferi, is to perform an Enzyme-Linked Immuno Sorbent Assay (ELISA), which is also often used to isolate HIV, followed by a Western Blot test.
In May 2001, the FDA approved an updated ELISA test called C6, which uses a synthetic hybrid molecule derived from the surface of the Lyme spirochete. A positive C6 test appears to correlate well with acute cases of Lyme disease, they say, and it does not appear to cross-react with a related tick-borne pathogen.
Yet in 2005, researchers from Johns Hopkins University released findings from a 2-year study which showed that the CDC’s two-tiered testing method misses up to 75 percent of Lyme cases.
The Journal of Clinical Microbiology and The Lancet have published reports indicating that as the Lyme spirochete traffics between tick and mammalian hosts it expresses proteins differently and changes its outer surface proteins in order to adapt to the drastic biological differences in the two environments. According to the reports, it also appears to express proteins differently in living tissue than it does in lab cultures. In theory, the same strain of spirochete cultivated in a petri dish—which is used to provide the antigen base for the Western Blot test—may express proteins differently in the living patient and thus may not even appear on the test though the patient is actually positive for the disease.
As a result of such conflicting science, many who suspect they have Lyme disease often pay out of pocket for second opinion tests at Lyme literate labs that usually don’t or can’t take health insurance as their tests aren’t sanctioned by the CDC and state medical boards.
In 2005, the CDC and FDA issued a warning about “commercial laboratories that conduct testing for Lyme disease… whose accuracy and clinical usefulness have not been adequately established.”
Indeed Lyme suffers should use caution when investigating alternative testing and especially treatment. A new breed of snake oil salesman has emerged to prey on sufferers of ill-defined symptoms, often misdiagnosing them with Lyme disease and subjecting them to all manner of alternative treatment techniques.
In 2005, James Shortt, a South Carolina doctor specializing in alternative therapy for Lyme disease (in the form of hydrogen peroxide fed intravenously) was initially charged with homicide after the widow of a man who died of prostate cancer filed suit following his death. According to the negligence and reckless conduct suit that followed, Shortt misdiagnosed Michael Bate with Lyme disease, began intravenous hydrogen peroxide therapy—a practice that has never been approved by the FDA or any credible science—and also prescribed testosterone, which caused Bates’ cancer to rapidly advance, resulting in his death about six weeks later.
As the disease and its Internet exposure continues to spread, some in the medical industry are concerned that what they consider disinformation about chronic Lyme disease will attract scores more desperate patients to unqualified for-profit physicians each year.
According to some research journals, the Internet has become a powerful mechanism for organizing patients and presenting poorly documented information to the public. The owner of one private Lyme diagnostic lab recently told Forbes, “Patients, because of the Internet, have become my best salesmen.”
Because of the varying standards of care and conflicting science surrounding the Lyme disease issue it remains unclear if the standard 28 days of antibiotics actually eradicate the disease. And the effectiveness of many popular alternative treatments is spotty at best.
One popular alternative treatment method is the use of high-pressure (hyperbaric) oxygen (HBO) chambers. HBO therapy is legitimately used to treat deep-sea divers suffering from decompression sickness (“the bends”) and smoke inhalation. According to Dr. Joseph Jemsek, a NC based Lyme literate doctor, one scientific study of HBO therapy, conducted by William Fife, Ph.D. at Texas A&M Hyperbaric Laboratory, indicates that Lyme bacteria are debilitated in high oxygen environments. Despite the fact that HBO therapy has not been proven to effectively cure Lyme symptoms in humans, patients across the U.S. continue to pay up to $4,000 for each 90-minute session.
Another controversial alternative treatment method, outpatient intravenous therapy, is a multi-billion dollar per year business. Many Lyme sufferers claim to experience positive results from the treatment, though the practice still remains largely unregulated and subject to malpractice and fraud.
During the 1990s, the CDC documented 25 cases of antibiotic-associated biliary complications among persons with suspected Lyme disease who had undergone the treatment. In 2000, physicians reported the death of a 30-year-old woman who died from an infected intravenous set-up that had been left in place for more than two years. She was being treated for a case of “chronic Lyme disease,” which could not unsubstantiated.
Yet, malpractice charges are filed every year in a number of medical fields.
Parkman readily concedes that there are quacks out there who are hurting the already beleaguered Lyme literate cause and giving legitimate scientists a bad name. As president of the Lyme Disease Network of South Carolina, he believes that the primary goal of Lyme literate support groups like his should be to warn and educate patients and to provide accurate information and documented research so they can make informed decisions.
“We don’t tell people what to do and we don’t diagnose,” he says.
The state of California, recognizing the apparent benefit of long term antibiotic treatment, recently amended sections of its Health and Safety Code to formally recognize the treatment: “Recent cogent scientific and clinical experience reviews of Lyme disease have documented that long-term antibiotic therapy, varied by clinical symptoms has, in general, substantially improved patient health and that discontinuation of such therapy while clinical symptoms remain commonly results in relapse and further disability.”
As research universities and state governments are beginning to explore alternate approaches to the diagnosis and treatment of Lyme borreliosis, Parkman hopes that the medical insurance industry will follow suit. So far, insurance companies have placed their economic clout behind the less expensive, short- term treatment protocols. Parkman believes that insurance should also cover credible alternative treatments like long-term antibiotics if those treatments appear to work for the patient.
“Over the long term, I believe it’s far more costly not to treat people with Lyme disease,” Parkman says. “Because these people are sick, they’re not inventing things. They’re not imagining things. But they’re going to the doctors, the hospitals, the emergency rooms, they’re not working, are on disability. It seems that it would be more cost effective from the bottom line point of view to properly diagnose the disease and treat it.”
“These insurance companies are being very short-sighted,” he says. “In addition to the enormous amount of human suffering, there’s an enormous economic cost as well.”
In the meantime, the medical battle rages on. In November 2006, Connecticut Attorney General, Richard Blumenthal filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA during the drafting of the treatment guidelines concerning Lyme disease. A few weeks later, Congressional Representative Chris Smith (R-NJ) wrote a letter to the CDC questioning their support of the IDSA guidelines and suggesting that they show support for alternative guidelines developed by other research.
So far, the CDC has declined to do so.
talkback@columbiacitypaper.com
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April 3rd, 2007 at 02:32 PM Finally a Real Reporter!!!!
April 3rd, 2007 at 02:42 PM THANK YOU FOR THE LYME ARTICLE!!! I had to pay $50,000 cash for 9 months of IV Rocephin to get my life back- thank goodness- it was worth every penny!!! I was going into dementia at the age of 29 and my experience and that of others like Wyatt Sextons has convinced me that a lot of Alzheimers is Lyme disease. I was 29 years old and could no longer remember the name of my two year old. But insurance companies are running the Lyme wars- they didn't have to pay for my IV even though I had a tick bite, rash at bite site and subsequent positive tests. They got away with diagnosing me with Post Lyme Syndrome after paying for a month of antibiotics- and THEN when it was clear that I was still sick my insurance company guideline RULED doctors diagnosed me with "a multi-system progressive neurological disease TRIGGERED by post-Lyme Syndrome". MAy THEY ROT IN HELL WHERE THEY BELONG! Being bedbound, incontinent and going into dementia is not a life I wanted any more at the age of 29= and in agony around the clock. Oral antibiotics did nothing for me- I was on them a year and kept declining. Then IV- and if I had not *known* I had Lyme I would never have believed it- because nothing happeend for 6 whole months- and then- one day- for one minute- this tiny part of my hand was NOT in agony- it was so strange- and then the next day- and the next- I was betetr every day- and I stopped choking on food- stopped getting weaker- and soon I wa able to KEEP MY BALANCE and WALK AGAIN (although it took a full year before I could walk a full block and months before I could falter to the mailbod up the driveway). And for the last 3 months of IV brought me bnback to life. I have no pain today and have lived normally for the past 6 years. I was able to go back to work full-time. THAKN GOD for longterm antibiotics- and my angel LLMD! May the IDSA and insurance affiliates ROT IN HELL! Sincerely, S Olson
April 3rd, 2007 at 06:59 PM A really fine article, and one that is rare in actually understanding the problems with lyme diagnosis and treatment. This disease was initially investigated about 30 years ago, but it is still an "emerging infectious disease" apparently. Why is it taking so long for the government health agencies to get this right? If I had not gotten antibiotic treatment longterm, I would have been incapacitated or dead by now. Unfortunately, many have been injured or lost due to the failure of the medical profession to believe that bacterial infections can be chronic. They know it is true of other bacteria, so why is it so hard for them to believe that the lyme bacteria can too?
April 4th, 2007 at 04:20 PM Many thanks for your excellent article. Here in California, where many doctors still believe we "have no lyme disease", I was bitten by an infected tick in my own back yard. In spite of repeatedly positive tests, it took eight years to find a doctor educated to effectively treat lyme disease. Chronic lyme results when doctors do not identify, or treat early enough to completely defeat the bacteria. Many of us who had to wait years for proper treatment can now only manage the disease, though we have not given up the hope of a cure. Ann Krakauer Healdsburg, CA
April 4th, 2007 at 10:25 PM It is a relief to see such a thorough, balanced article on Lyme disease ("A Human Feast," March 28), which from all appearances is moving silently but rapidly into the human population. It is an insidious disease that, as your article reflected, is responsible for many serious questions about our medical and insurance systems and their ability to deal with the public health implications. I have a family member with classic symptoms of "chronic Lyme." Before the symptoms appeared, she was a young, healthy, active woman in her late 20s. She works in the medical field, and her Lyme symptoms went UNRECOGNIZED for a full year while she was tested for many of the diseases this incredible syndrome mimics. She suffered from memory loss, numbness, general chronic fatigue, periodic shooting pains, blurred vision, severe joint pain. You can imagine how scary this was for her, and it finally took a non-MD to finally recognize what was going on from the cluster of symptoms she described in conversation with a fellow nurse. Treatment, so far, has been complicated by the unenlightened approach of the insurance industry and the lack of appropriate protocols from medical regulators. It is horribly discouraging. I have come to believe Lyme disease is a true threat to the general welfare, and it needs to be jerked out of the closet that the medical establishment is trying to keep locked. Nelda Holder Asheville, NC
April 4th, 2007 at 10:28 PM Thank You for writing such an awesome article about the truth behind Lyme disease. I became sick 6 months after I got married to my college sweetheart and went undiagnosed by my HMO for 1 1/2 years until I went to a LLMD and he diagnosed me with Lyme disease. I am currently under IV treatment for the past 3 months and am now able to function. I was unable to get out of bed before due to severe dizziness, lightheadedness, balance problem, headache, and other symptoms. Before I got sick I was 33 years old, a dietitian, 20 mile/week jogger, and in tip top shape. This disease knocked me down to a sickly 145Lbs, and all my HMO drs would do is laugh at me because they said I looked like an AIDS patient. I was tested for everything under the sun, all normal or negative. Thank you for bringing out the truth and being your brothers keeper. We are fighting an uphill battle to expose this severely ignored disease. THANK YOU!!! Sincerely, Richard Briseno
April 5th, 2007 at 08:42 AM I read the excellent article "A Human Feast" by Todd Morehead. Thank you for publishing his well-written, and obviously well-researched, discussion of the issues and controversy surrounding Lyme disease. I live in San Diego and was infected nearly three years ago while staying in a log cabin in the backwoods of the Ozarks during my July Fourth holiday. I am still trying to get a diagnosis. Not even the University of San Diego Medical School is current with the research and developments surrounding Lyme disease. Thank God for the Internet, or I would have never known why I am so sick. I just wish that doctors would take the time to use it. In moments of cynicism, I think there is a conflict of interest: If doctors cure the disease, they lose their long-term revenue stream. So they just address the symptoms. Be well, Connie DePalma San Diego, CA
April 5th, 2007 at 11:13 AM at age 38 my husband began suffering first with shoulder problems which soon after led to numbness in his hands. He said he hadnt "felt" right in 2 years prior to that. Once he began to suffle in his step we got very worried. Upon doing someonline searching i found a support group and began talking with a woman within driving distance to us that turned us onto her husbands dr and sure enough, when tested it was lyme . Unfortuantly my husband , being an advide gym goer also used steroids with in case happened to MULIPLY the lyme bacteria to apoint that even though he had stopped and was under a drs care on antibiotcs/iv did not make it. He fought the battle hard but in the end the bacteria had spread too far into his nervouse system and he passed at age 40. I at the time was also tested and took 5 months worth of antibiotics and now feel fine. Thank God and the Dr for that. Just a note,,,if you are taking steroids for any reason and have been DX with Lyme please please talk to you Dr about it. Hopefully one day everyone will be as lucky as i was to recover.
April 5th, 2007 at 01:44 PM The article by Todd Morehead was brilliant. Thank you so much for an intelligent presentation of the Lyme debate. I was diagnosed with LD 14 years ago, after suffering lyme-related meningitis. After a hospitalization and intravenous antibiotics followed by a course of oral antibiotics for several months, I was declared cured. Seven years later, this disease roared to life inside my body. Little did I know that I was one of millions experiencing this reoccurrence. Thanks to a quick-thinking internist in Greenville, I was sent to Dr. Joseph Jemsek in Huntersville, NC, and, yes, he saved my life. I hope your article is the spark that ignites alarm among the SC medical community. There are scant few Lyme literate physicians. I am blessed that the physicians who have become part of my life are caring, compassionate people who understand the sinister way LD burrows into cellular structure. The healthcare industry in SC is exploding. There is a huge opportunity in, especially, the upstate to create an infectious disease clinic, together with a research facility, that will not only help people suffering with this disease, but educate the greater public about their risks and other physicians about clinical diagnosis. In order to make this endeavor a realty, the SC legislature must pass protective legislation similar to what has been done in several Lyme-impacted states. California is an excellent model. Thank you for writing one of the best descriptions of LD I have ever read. Karen Iacovelli Greenville SC
April 5th, 2007 at 01:58 PM Thank you for a thorough article. Even though I disagree with the CDC and some of the information (like the Elisa test being the best. See the book "Everything you need to know about Lyme Disease by Karen vanderhoof-Foorschner and forward by Dr. Willy Burgdorfer who discovered Lyme Disease), I felt that it was an article that was well researched and balanced. True journalism that allows for debate, but is not slanted one way or another. Having been sick and sent to Dr. after Dr. for over 4 years with no results and being told that I had "allergies" etc., and slowly becoming more and more disfunctional, I can tell you that the Medical Community is not being taught about this epedemic. At age 30 I began to have symptoms, they were very slight and so I did not share them with friends or family. But slowly they kept getting worse along with many other symptoms. When you have been to Dr. after Dr. with no solutions or real diagnosis, you begin to think you are crazy and you stop looking for - or asking for help. I ended up living in a bed for the most part of three years in my 30's, and even my parents in their 70's had to care for me in their home for 6 months. My husband would have to come visit me. At that time I was finally diagnosed and under treatment. I got well moving out of the treatments of antibiotics and into the world of alternative medicine. I am Lyme free. These types of treatments are used in the medical community in Europe and are well respected. Yet here they get bad press. Of course you must reserach who you are going to and their reputation just like any western medical Dr.'s. Not all of them are good, but not all of them are bad either. Please keep following up ont his story and there are thousands of us out here willing to share our stories! Sincerely, Linda Stephenson, KS
April 5th, 2007 at 04:23 PM Thank you for writing this article. There are thousands of us out here needing help and hoping for people like you to help raise awareness about the misconceptions and prevelance of Lyme Disease. How many people are being misdiagnosed with ALS, MS, Autism, Aspergers, Chronic Fatigue, Fibro-Myalgia, Migraines, Restless Leg Syndrome, Meniere's, Sleep Apnea, Rheumatoid Arthritis, Lupus, Etc.? The need for long term antibitics in Lyme Disease is so important, as is early diagnosis. Thank You Thank You Thank You.
April 6th, 2007 at 06:13 PM Houston, Texas
April 6, 2007
Subject: My testimony as a Lyme patient
Dear Mr. Morehead:
Thank you for writing that article on Lyme disease. Although all articles can be improved, yours is very much better than most!
The remainder of this letter describes my Lyme disease experiences and those of my wife.
I am a 70-year-old man. My 64-year-old wife, our four children, and our five grandchildren also are infected. About half of us live in southeast Texas.
Clogs were found in three of my coronary arteries, one of which was treated by angioplasty and a stent. But long after that and even after I had taken oral antibiotics for a long time, I still had congestive heart failure. A walk of 100 yards would cause blood to back up from blocked coronary arteries and drip into my lungs. The common term for that is "shortness of breath." My own theory is that the bugs caused inflammation in my coronary arteries and that bodily systems put plaque ("lesiions") at the points of inflammation.
Later, I began taking the antibiotic Rocephen intraveneously (IV) through a portacath[eter]. I'll describe it. A surgeon inserted the portacath under the skin of the left top part of my chest and stitched the skin back into place. The sharp end of the portacath needle was semipermanently inside a vein feeding into my heart. A short line attached to the portacath hung on my chest. Each day, four days a week, I opened the valve of the exterior line and pumped in Rocephen and some auxilliary fluids.
The portacath was removed after the three months because my Lyme-literate physician no longer was around to authorize time extensions; originally he had said I needed IV for a year. Though some symptoms were improved, I still was infected and had arthritis. The arthritis is becoming progressively worse. Spirochetes and probably some protozoan coninfections seem to still be in my body, though weakened and/or in "hiding."
One day during the three months on Rocephen, I realized that my symptoms of congestive heart failure had disappeared! Last year , for instance, while visiting family and friends whose homes are in the Sierra Nevada and Cascades (mountain ranges), I walked and jogged for miles, including up hill on unused logging roads, almost daily.
To digress, after I taken IV Rocephen three months, the Lyme-literate physician stopped treating his patients and began full time research (using the data collected from us, his patients) and writing articles that he hoped would be published in medical journals. His primary mission is to inform the medical community of how best to diagnosis and treat Lyme disease.
So, my wife and I found another Lyme-literate physician, located in central Louisiana, and began driving there once a month. After testing us, the physician prescribed oral antibiotics. We have been taking them since mid 2006 but still have symptoms, though hers are worse than mine. Recently, she began taking antibiotic through IV, which has made the blood clots in her leg disappear and the burning sensation on her skin to occur less frequently and be less intense. She still is chronically fatigued and has some arthritis.
She should continue on IV, but the medical insurance company has begun balking. Yesterday, I heard her using the telephone to tell a Cigna representative, "If Cigna stops paying for my IV before it has had time to eradicate the bugs or suppress them long enough for my immune system to strengthen, Cigna will have pronounced my death sentence; I will die!" The representative was polite, but I suppose she did not tell Cigna's decision makers of my wife's concern.
You have my permission to use my testimony and my full name in any future articles. If you do so, you can add that I -- a Christian and retired evangelical preacher -- request those of your readers who pray to petition the Creator on behalf of my wife, Marianne.
April 10th, 2007 at 12:02 PM
Thank you for the story on Wyatt Sexton, who was found disoriented from stage 5 Lyme disease. This is a dreadful disease and it is spreading further and further south. Doctors know how to diagnose and treat it up north as they have been dealing with it for a long time.
My brother, who lives in Raleigh, suffers from this disease. He and many other patients are without adequate treatment as insurers consider the only effective treatment available as “experimental.
My brother was left with more than $30,000 in medical costs because Blue Cross refused to pay. Fortunately, his good doctor wrote it off – not only for my brother, but for many others in the Raleigh area. But, what will happen if my brother and others require more treatment in the future?
The “experimental” treatment my brother was given was very helpful and he is in remission, but his insurance company should be shot! State lawmakers in South Carolina need to be aware that this problem is growing throughout the south and they need to enact laws such as those passed in Connecticut and other states that require insurers to pay for treatment if a person’s doctor prescribes it.
Lyme is very tricky to diagnose. The infection can hide in the blood. It is also difficult to treat and requires mega doses of certain kinds of antibiotics. It can cripple and cause terrible disorientation, pain and anxiety. It is headed our way and I predict a big fat insurance pickle over this one.
Suzanne Larson Beaufort, SC
May 10th, 2007 at 01:03 PM
Thank you for reporting this story! Finally a fair and balanced report on the subject. Again, as with AIDS the “Band Plays On” in the Government as it’s Citizens suffer and die. We can’t claim a prejudice as with AIDS - we aren’t a group deamed “deserving” of the disease, but we are accused of being “stupid” or worse “crazy” in the hallowed halls of medicine. Those who give up or simply don’t have the support or the energy to go on die a horrible death. Those who do try to fight have to sell all our belongings and try and find someone who will treat us… usually someone who isn’t afriad to lose their license.
My body has been attacked by Lyme for quite sometime now and took a huge toll. I just got out of the hospital with heart problems - prior to that it attacked my nervous system and I have a 3mm wide stip of spinal cord missing from C1 to T7. It grows about six CM every six months. At this rate I will be a parapalegic in about five more months. I am less than 40 years old. I lost the ability to function in my early thirties. My kids, my husband, my family, and my so called friends really thought I was crazy when I started passing out, sleeping all the time, and screaming in pain. Finally, I found a doctor who knew immediately what was wrong when I went blind and tests proved it.
There is a new test that actually stains the blood drawn from the patient (buffy coat) and counts the spirochetes in the blood compared to the red blood cells - mine was 128:1 (WOW) saturated. It’s much more effective than the Western Blot and other tests that measure antibodies because Lyme lays the immune system to waste and I personally have no antibodies to the spirochete. My nervous system went first, then my skin, then my thyroid, then my gall bladder, then my pancreas, then my instestines….now my heart. I don’t expect to see 43.
I had the bullseye rash and it was ignored. I was told by immunologists at Vanderbilt that the “Ticks carrying Lyme do not cross into Tennessee”. What, they recognize the state line? How ridiculous is that. Had they given me just a few antibiotics I could have stood a chance, but no. I got no treatment until well after I went blind. Plenty of psychiatric references, but no relief.
I apologize for the long letter, but I thank you for printing the article and raising the issue that Lyme is a killer that will keep propogating while our government does the equivelent of covering their ears and saying “lalalalalalalalalalalalala” while people are screaming for help, begging for help, and burying their dead.
A.D. Harris, Tennessee