A new study that points to sexual transmission has added to the controversy.
Blacklegged ticks are known carriers of the pathogenic bacteria that causes Lyme disease.
PHOTOGRAPH BY JIM GATHANY, CDC/PHIL/CORBIS
PUBLISHED FEBRUARY 28, 2014
Part of our weekly “In Focus” series—stepping back, looking closer.
Rampant disagreement over what constitutes Lyme disease—in particular, who may have contracted it and how, and how long it lasts—has spawned the larger question of how best to treat it. A new study pointing to the possibility of sexual transmission of the pathogen adds fuel to the fire.
Amid the uncertainty, a patient-led lobby (the counterculture, as someone has called it) that includes doctors as well as Lyme sufferers advocates a broader definition of the disease, both for treatment and insurance purposes.
But the medical establishment asserts that too liberal a definition—and what are seen as renegade practitioners—has led to irresponsible and potentially dangerous treatment of unrelated maladies misidentified as Lyme.
It’s also unknown how many people have died because of Lyme. A 2011 study found that of the 114 deaths reported over a five-year period listing Lyme as a partial or direct cause, only one was consistent with clinical manifestations described by the International Classification of Diseases.
In December 2013, the Centers for Disease Control and Prevention (CDC) confirmed that Lyme carditis—a condition in which the Lyme bacterium infects the heart—caused three deaths over the past two years. Between 1985 and 2008, only four other fatal cases were confirmed.
While the course of the illness varies greatly from person to person, initial manifestations can include a unique skin lesion known aserythema chronicum migrans, headaches, musculoskeletal pain, coughing, sore throat, conjunctivitis, and minor neurological impairment.
If the diagnosis is confirmed early enough, Lyme is treated almost exclusively with short-term antibiotics, often penicillin, which are almost 100 percent effective. But if Lyme goes untreated, symptoms can progress. (Watch related video: “The Deer Tick”)
In Lyme’s second stage, typically between one and several months after the initial infection, neurological abnormalities can arise, such as meningitis, encephalitis, and cranial neuritis, which can manifest as facial palsy. Some patients develop cardiac problems.
In the third stage, which can take several months to years to show up, many patients develop chronic arthritis as well as an increase in neurological and cardiac symptoms, the severity of which can ebb and flow.
Voices in the counterculture argue that Lyme’s symptoms are more intense and longer lasting than the medical establishment acknowledges. They say that symptoms of chronic Lyme disease are responsible for related deaths, including suicides from depression about the disease or from the trauma of persistent debilitating symptoms such as arthritis, heart problems, and cognitive impairment.
And now, further complicating the picture, a study published this January contends that Lyme disease may be sexually transmitted. It shows that the Lyme pathogen, Borrelia burgdorferi (Bb), has been found in both male and female sexual secretions, raising the question of whether people are at risk through intimate contact.
Bb is one of only six known spirochete bacteria, named for their coiled spiral shape. (One of the six is the bacterium responsible for syphilis.)
A study of Bb last year revealed that it’s the first known organism that doesn’t need iron to survive. This allows it to evade an iron-inhibiting hormone called hepcidin, produced by the liver, which can starve intrusive bacteria.
Instead, Bb thrives on manganese, which it uses to make essential enzymes for survival—something researchers who made the discovery last year believe could play a role in ultimately combating the pathogen.
Origins: Did Ötzi Have Lyme?
In 2012, a team of researchers claimed that the 5,300-year-old mummy known as Ötzi the Iceman, discovered along the Austria-Italy border in 1991, had contracted Lyme.
Some claim that the disease first appeared in Germany in the 1880s or France in the 1920s; others say it took root in the U.S. around the time of the Great Depression.
In the summer of 1975, 39 children living relatively close to one another in Lyme, Connecticut, were recognized as sharing common symptoms consistent with juvenile rheumatoid arthritis.
Polly Murray, whose 11-year-old son, Todd, was one of those affected, alerted the state health department after the local orthopedic doctor was stumped. “He had a different answer for everybody,” says Todd, who is now 49.
As his mother began drawing attention to the strange epidemic, a doctor at Yale University named Allen Steere began sleuthing the problem.
In a 1977 paper in the medical journal Arthritis and Rheumatism, Steere identified a new disease transmitted by ticks. He called it Lyme arthritis, and soon after it became known as Lyme disease.
Lyme ticks are active year-round, other than during subfreezing weather, but spring is the most dangerous season. That’s when the baby ticks, or nits—so tiny as to be almost invisible—are born.
One theory—compelling but controversial—about the sudden emergence of the disease in Connecticut blames the accidental release of infected ticks during experiments at Plum Island Animal Disease Center, on Long Island Sound about eight miles south of Lyme.
Originally operated by the U.S. Army, then by the Department of Agriculture, and now by the Department of Homeland Security, the facility’s official mandate is defense research relating to agricultural bioterrorism.
A book by Michael Carroll called Lab 257 cites post-World War II experiments on Plum Island that involved using ticks as disease vectors for germ warfare.
Officials have denied the allegations, but Carroll and others—including former Minnesota Gov. Jesse Ventura—allege the government has used the facility to develop various diseases intended for delivery as biological weapons.
When Is Lyme Lyme?
For his discovery of Lyme and subsequent work on the disease, Allen Steere started out as the counterculture’s golden boy. But he came to believe that too many symptoms were being labeled chronic Lyme without proof. He says he’s now a pariah to advocacy groups and Lyme sufferers, and he avoids involvement in the increasingly polarized controversy.
Gary Wormser, head of infectious diseases at New York Medical College in Valhalla, agrees that misdiagnosis of Lyme is rampant. “I don’t think it’s helping patients. I don’t think it’s helping science,” he says.
Lyme, Wormser says, has become a catchall for a constellation of symptoms that elude diagnosis: “If I can’t figure out what you have, it must be Lyme disease.”
He puts some of the blame on medical science’s failure to find answers to a range of symptoms that include headaches, joint and muscle aches, depression, chronic fatigue, irritable bowel syndrome, and cognitive impairment. These ailments often seem to be subjective, with no physiological cause.
“For a lot of people who are not feeling well, those people are the most vulnerable to turning to the types of practitioners that don’t follow mainstream practices,” Wormser says.
“I’m not saying there aren’t some [Lyme] patients that have been debilitated by some of these symptoms, but it seems to be a really small percentage—far less than you’d be led to believe.”
Todd Murray, one of the original Lyme children, grew up to be an emergency department physician. He believes he still suffers from symptoms relating to the original infection.
“I have weird things I attribute to Lyme,” he says, including a permanent heart condition diagnosed in 1989.
As a doctor, Murray recognizes the dilemma of anecdotal evidence. “I can see both sides, because physicians have to go on evidence-based medicine. So to try to use therapies which have not been shown to be beneficial in clinical studies doesn’t make sense.”
He cites, for instance, hormone replacement therapy for post-menopausal women, which was ultimately shown to increase coronary artery disease, stroke, and breast cancer. “A lot of things in medicine would seem to intuitively make sense. However, when they’re studied, the outcomes may be found to be different than expected,” Murray says.
Challenges of Treatment
Identification of Lyme usually begins with the telltale bull’s-eye rash. But patients don’t always present with the rash, or sometimes it has a different shape and appearance, which means the disease can progress before a course of antibiotics is prescribed.
In Lyme’s later stages, antibiotics are still used, with dosages and duration increased. But there’s disagreement as to whether antibiotics should ever be administered for longer than three months, even in extreme cases.
“The ideology of the counterculture,” Steere says, “is to simply treat symptoms with antibiotic therapy, [and] the Infectious Diseases Society of America [IDSA] has said in essence that’s not correct.” The IDSA notes that “using antibiotics for a very long time [months or years] does not offer superior results and in fact can be dangerous, because it can cause potentially fatal complications.”
Counterculture doctors treating patients whom they believe have chronic Lyme will recommend not only long-term antibiotic treatment but also various other therapies, such as holistic curatives, physical therapy, and counseling.
Because some people who have Lyme elude detection, “you have to ask the right questions when you make a diagnosis,” Murray says. “I think there needs to be a standardized, reliable protocol for testing.”
Culturing the Lyme spirochete, Bb, to determine the presence of Lyme would provide a definitive answer. But it’s costly and time-consuming, and therefore rarely done.
Instead doctors usually check for the presence of Lyme antibodies through a blood test. According to the CDC’s recommendations, if the test, known as an enzyme-linked immunosorbent assay (ELISA), proves negative for the antibodies, no further test is recommended. If it comes up positive, a second test—an immunoblot test—is recommended to confirm Lyme.
Murray says ELISA and blots in tandem are currently the best method, along with more complicated cerebrospinal fluid tests in cases where symptoms are apparent but the first two tests are negative.
But with these methods, false negatives are still a significant possibility. It’s also possible that Lyme cells can alter their outer surface protein and escape detection, and that different spirochetes can cause symptoms that look like Lyme but aren’t. All this, Murray says, means research must be targeted toward finding better tests for the disease.
Follow the Leaders—Or Off With Your Head!
Daniel Cameron, president of the International Lyme and Associated Diseases Society, speaks for the counterculture. He believes that “thought leaders” in the medical community prevent acceptance of what he considers strong evidence that Lyme is both underreported and ineffectively treated. “Who wants to question Dr. Wormser?” he says.
“Even though the evidence is accumulating [that Lyme can be chronic], doctors have a tendency to have to wait for a thought leader to change their mind, otherwise they’ll get criticized, or the medical board might drop the ax on you,” he says. “Off with your head! So it becomes high risk to become a doctor who treats chronic Lyme. Most doctors don’t want to have to.”
Cameron says many state medical boards are pursuing lengthy “chart-by-chart” investigations of doctors using long-term antibiotic treatment for Lyme. These can continue for years prior to legal action by boards aimed at revoking a doctor’s license.
But five states—California, Connecticut, Massachusetts, New Hampshire, and Rhode Island—have passed laws protecting physicians from reprisal or harassment when treating Lyme patients with long-term antibiotics.
While he’s careful not to use the word “cure,” Cameron says that with long-term treatment, patients who have had Lyme for years can go into remission and be symptom-free.
He’s not particularly impressed with the CDC’s latest announcement that the number of Lyme cases in the U.S. is likely ten times the30,000 or so generally reported each year.
“In epidemiology, every time you have a surveillance system, you always at least have a tenfold underreporting. There have been studies that show it might be as much as 40 times that.”
He also questions the fact that 95 percent of the reported cases come from just 13 states, mostly in the Northeast, along with Minnesota, Virginia, and Wisconsin. People in other states are less likely to report cases if the official view is that Lyme is rare and geographically restricted, according to Cameron. “That’s a little bit of a reporting problem.”
Could the CDC’s admission of greater numbers be related to the preparation of a new Lyme vaccine?
“They had one vaccine,” Cameron says—LYMErix, which was available for about five years until 2002. It was then shelved because of low sales and, some say, questionable effectiveness. (Ironically, Lyme vaccines are available for dogs but not humans.)
“The buzz on the street is that, of course, one of the reasons the CDC recognized more cases is that in order to get a vaccine through the pipeline, you have to have a problem,” Cameron says.
Raphael Stricker, a San Francisco–based internist who co-led the sexual transmission study, says the possibility of Lyme spreading that way would “change the whole picture.” It means that potentially ticks aren’t the only culprits.
“What I think this is going to do is that it’s going to move treatment to another level,” he says.
Jarret Liotta is a freelance writer. Follow him on Twitter.
What happened to investigative reporting, NatGeo? This report by Jarret Liotta has failed to mention some of the most important information about Lyme disease. First, Lyme does not come alone. It is almost always accompanied by a co-infection, or two, or three, courtesy of the tick. And one of the first thing an ILADS MD, aka “counter-culture doctor”, will do is test you for those co-infections. Would your doctor know to test for these?
Most infected ticks carry more than one disease, up to 10-12 possible. Bartonella, Babesia, rickettsias, anaplasmosis, the list goes on and is growing as more are discovered. As we have learned from our “counter-culture” doctors, Lyme is difficult to cure if there is a co-infection. So those are usually treated before the cunning Lyme bacteria.
I think the white-footed mouse deserves a mention here, rather than blaming it on the deer, since the mouse is the biggest carrier of Lyme. Deer transport the ticks, but the mouse, and other small rodents, are the meal than passes Lyme from ticks to other mammals. Like a dirty needle, the ticks collect disease as they feed and pass it all along to… you.
Dr. Todd Murray was involved in one of Alan Steere’s early “studies” with Lyme, as Steere was looking for an antibiotic cure. Steere treated some people with antibiotics and did not treat the control/placebo group. Dr. Murray was in the placebo group. Without treatment, Borelia burgdorferi multiplies. Dr. Murray still has odd symptoms, years later. He is very kind mentioning, in a recent interview, that he didn’t think Steere meant to use him as a guinea pig.
Polly Murray said in her book, The Widening Circle, that at first she was pleased to help Alan Steere study Lyme, but by the end of the book, she was disappointed that Steere decided to only use the arthritic symptoms and fatigue to describe Lyme when she, and by then many others, knew that Lyme did not stop there. Her own family had been ravaged by the disease with a myriad of symptoms, including heart, neurological, intestinal, psychological problems. Steere’s definition is the one used today by the CDC, even though many of our “counter-culture” Lyme MDs have taken it upon themselves to listen to their patients and have redefined Lyme with symptoms that affect every system in the body. And why not. Lyme is a spirochete like syphillus which was called the great imitator because it mimicked so many diseases. But with Lyme you get more, since it’s bigger and smarter than the syphillus bacteria, has the ability to change its cloak (confusing our own immune defenses) and burrow into the body’s tissue. So why wouldn’t Lyme be more difficult to cure and cause lots of different symptoms. Dr. Wormser?
Vaccine? The last vaccine developed by some of our most prominent infectious disease doctors didn’t work because some vaccinated people were taking on the symptoms of Lyme -permanently. Smith Kline Beecham took it off the market because they were being sued. Turns out 1/3 of the population has a genetic marker that makes that particular vaccine permanently debilitating.
If you really want to do some investigating… Check out the Pookeepsie Journal’s Lyme chronicles. Now that’s journalism. There us so much more to this story. The IDSA’s $earch for a new vaccine, the $ymbiotic connection$ between the CDC and the IDSA. Why the CDC calls people with symptoms other than the IDSA’s “Lyme loonies”. Yes, folks, direct from the pages of the CDC reports that took five years to be released (longest ever) under the Freedom of Information Act, and came out mostly redacted. Redacted. Why would the government have to hide anything about Lyme disease?
This isn’t a simple “he said, she said” situation that can be summed up in a short article. I’m surprised National Geographic didn’t dig deeper and discover the truth in a story that continues to grow, not only in the shameful way doctors who are trying to find the truth are treated ( ” counter-culture” really? Is that the current buzzword for MDs trying to get to the cure, treating patients with compassion, and respect, and succeeding in getting a good number back on their feet and back into life) but also because we are being cheated out of treatment and cure for this ever-growing menace by an unduly limited IDSA/CDC definition of Lyme AND it’s co-infections.
Please step up and do a real story on Lyme. Someone needs to get to the bottom of this. And if you think, Jarret, that Lyme is easily cured, and unless you dare to go to a “counter-culture” doctor, I’d stay out of the woods.
While I found this piece to be a balanced view of the controversy over Lyme disease, I am disappointed that National Geographic chose to continue the use of “counter culture” to describe tens of thousands of Lyme patients and their physicians. The definition of counter culture is “a way of life and set of attitudes opposed to or at variance with the prevailing social norm”. This implies a choice. Lyme disease is not a way of life or a set of attitudes. There is not a single lyme patient who has chosen to be sick. There is not a single physician treating lyme patients who wanted to be in the position to potentially loose their medical license. These doctor’s listened to their patients and bravely found a way to treat them and bring them back to health. By using the term “counter culture”, the CDC and IDSA choose to demean patients and their doctors. It feels like when you are loosing the argument, attack the other side. I am quite surprised that National Geographic did not challenge this viewpoint. I would hope that a followup article would include a full review of the changing facts and science and more importantly interviews with patients. Tens of thousands would line up to tell their story.
Proof has now been presented for both sexual transmission and congenital Lyme. With less than 50% experiencing the rash/tick bite, many are being left to suffer for years with this disease and whole generations are living with it. Why is a bacteriological infection (something mankind has been curing for years) not being cured now? Is the medical authorities in this world wanting to bury their heads in the sand for the sake of money? Diseases will always be in the world, but the adults and children who can create the revenue for the economies won’t be 😦 something has to break eventually
Lyme and Aggressive/progressive MS:
I took chronic Lyme antibiotic combinations for two-and-a-half years including babesia treatment and we stopped the MS process and I was 90% better overall. I’m grateful. I continue to improve with antibiotics, finding and caring for other complications, supplements and herbs and I am now 94% better. Others with Lyme and MS have similar results.
This threatens the MS industry profits. That’s politics and profits. There is little profit in antibiotics
It is as wrong as it gets to deny very ill people, what helps them.
Fikrig and Flavell et al found that band 41kDa was specific, accurate, and homologous to borrelia. It is useful, and that’s why it’s even included in the CDC’s “5 out of 10” bands test. It is never variable like the others, so clinical symptoms + 41kDa should still remain a good test method.
The new Flagellin method should work, too. The reason two-tier testing sucks is because of antigenic variation and immuno-suppression. You are only going to be CDC positive if you have a hyper-responsive immune system.
The whole ILADS vs IDSA should stop. It is a false dichotomy. Neither should be in control of these matters because it obviously too emotional for both sides. Not to say the IDSA docs can’t do science, but they are merely wrong. The original serodiagnosis of Steere et al’s was that Lyme was chronic and disabling. And then, nobody could have “Lyme” unless it was just EM rash and arthritis. Brain invasion was basically thrown out, since band 23 produces low sera anyway on the WB. The WB at Dearborn was found to be 15% effacious, way below standards for other diseases. So, the WB misses 85% of cases. NEW TESTS ARE NEEDED, FIRST. THEN NEW DRUGS. ABX ARE ANTIQUATED AND FAIL.
Controversy is not really there. Lyme is a TLR2 agonizer basically that sets off an explosion for other infections to become activated. No mystery there. Find drugs for TLR2 agonism and you’d be rich. 🙂
BTW, anecdata is not evidence. You need lots of proof to make an extraordinary claim. The problem here is, Steere’s extraordinary claim was validated with his own peers in the eighties and early nineties, and then it was just thrown out for whatever reason. Which should be a red flag. Their initial hypotheses were correct, which is why it worked.
Understanding Lyme Disease and the co-infections that most people who have been bit by an infected tick also have,takes a lot of research.There are competing medical opinions and no real solid evidence because Borrelia Burgdorferi cannot be cultured.There is no reliable test for it and it is ridiculous for people to have the impression only deer ticks transmit it.All species of ticks have forms of it,and it has been found in mosquitoes.I personally know many people who were bit for only a few minutes and got the disease.So the media and most of the Medical Community misrepresent a lot of information about this illness.The most important aspect is that Lyme Spirochetes have at least a 21 day lifespan.The purpose of antibiotics is to kill 1,000’s of cycles of germ life,so the initial Medical Precedent set by the Infectious Disease Society of America is ludicrous and should be criminal.Literally every person is under-treated,if they are even lucky enough to get any treatment at all.Dr Wormser is known as one of the worst if not the worst spokesman for Lyme issues being that he was part of the IDSA that wrote the initial treatment guidelines.They were sued and lost an anti-trust lawsuit brought about by the Conn. state Atty. General,because the same Drs were trying to market and profit from a vaccine they concocted that did not work and further sickened people.If anyone wants real information about Lyme Disease that is not biased please go to the website for the Drs and scientists from ILADS (International Lyme and Associated Diseases Society).Lyme Disease is literally the #1 epidemic in the world now,present everywhere and most countries you cannot even find a Dr willing to treat you.
Thanks for writing this article. One thing missing was the latest discovery in August 2013 of Borrelia Miyamotoi, a new Lyme Disease bacterium strain that was found to be present in the U.S. This form of Lyme Disease does not show up on the standard lab tests but produces most of the same symptoms. A few weeks ago, a Standford University study showed that many ticks in California are infected with the Miyamotoi strain. There is currently no lab test for the detection of Miyamotoi, but the possibility of infection is very real and the symptoms are debilitating. The current level of funding and research for Lyme is lacking and almost nonexistant, but the Miyamotoi discovery shows just how much research is still needed. While it’s good to hear both sides of a controversy, I don’t think it’s fair to portray one side as a “counterculture”, especially when there are strains of this disease that don’t even show up on a test. And it would also be ineresting to find out the percentage of Lyme patients who are part of this so called counterculture. My guess is 80% because it’s the only way they are getting better.
@Carol WebsterSerously, if “There is currently no lab test for the detection of Miyamotoi”, then how did Stanford show that many ticks are carrying it?
@Joe Springer @Carol Webster To clarify: There is no commercial lab test for Borrelia Miyamotoi, meaning if you want to send your blood off to a lab to get it tested, none of the labs have the capability to test for it. The Stanford study tested the ticks, not human blood, and they used their own lab. Here’s the link:
30 years of illness. 30 years of doctor’s scratching their heads. Multiple diagnosis’ and labels were given to me. I learned to function despite the pain and fatigue I suffered from. I own two businesses, I worked with children with autism, I earned my 3rd degree black belt. Unfortunately, this past summer my body stopped working. Literally, I couldn’t walk, I couldn’t control my arms and hands, I couldn’t sit up straight. Doctors couldn’t figure it out. They turned me away, telling me I just needed to do more….WHAT?! I couldn’t walk! Do More?! Give me a break. I’m one of the most active people you will ever meet….MY BODY HAD STOPPED WORKING, I COULDN’T DO MORE! I had, over the past 20 years, three ELISA tests that came back negative. I had a spinal tap that also came back negative for lyme. Despite this, at the encouragement of friends who had recovered from lyme I sought out a LLMD. My blood was sent to INGENIX and I soon had a positive western blot. Yes, five bands made it CDC positive. 30 years of being told nothing was wrong with me and I don’t have lyme, only to find out YES I do have lyme. Now, four months in to treatment I am walking again. I can control my arms and hands again, I can read again. Why stop treatment if I am continuing to improve? There are thousands of us who have the same story. The evidence the long term antibiotic treatment can work is in the patients who are recovering. I live in Maine and it seems everyone knows of someone in the area who had chronic lyme, got treated and are now better. I had no idea, until I realized what was wrong me, that chronic lyme is epidemic and that treatment was hard to find.
“For a lot of people who are not feeling well, those people are the most vulnerable to turning to the types of practitioners that don’t follow mainstream practices,” Wormser says.
*****Lets be clear this isn’t about feeling a little unwell – we are talking about major debilitating symptoms. Maybe the patients are turning to alternative practitioners because mainstream medicine has continued to shovel over all studies that say this bacteria can burrow deep and avoid being killed.Lyme,
Wormser says, has become a catchall for a constellation of symptoms that elude diagnosis: “If I can’t figure out what you have, it must be Lyme disease
***********This is a ridiculous statement. The doctors treating these patients are putting their livelihood on the line and being ridiculed by IDSA and CDC and harassed by their states medical boards and it that isn’t enough – they are dealing with patients that have a complex set of symptoms that affects numerous parts of the body. In a nutshell they are time consuming patients and 10 minute in and out is not going to work for the patients with chronic infection from borrelia. Also nobody seems to mention that we are for the most part talking about people that don’t have just one infection from one source but a soup bowl of different infections acquired from the vector of the borrelia and the viruses and such that the patient already had dormant in their body that now have been given free reign by a wrecked immune system from the whole mess.
Enough of the sand throwing lets get down to figuring out why these people remain sick and move to a solution.
Counterculture? How about doing due diligence and taking more than a day to look up information?
Who makes money off of the only two tests the CDC recommends? And do those people (7 of them) sit on the branch of the CDC that makes the recommendations about Lyme? And do those people also control what gets printed about Lyme in medical journals? See, all of this can be found out if NG only tried to actually find out what’s happening.
Why in NYS is PCR testing illegal? Oh right, that would be a test these people don’t make money off of, mmmm…
And here’s an idea. LOOK AT THE BLOOD. Throw blood under a microscope and LOOK at it, low and behold you can see spirochetes. But, that’s only if Lyme is in that stage, but still, it’s not being done. The art of looking at things under a microscope is lost.
The CDC says that in NY in order for a doctor to actually report that they have in countered a case of Lyme, a bullseye rash has to be present. Well a bullseye rash is only present 10% of the time. Therefore, one could say 90% of the cases of Lyme are going unreported.
The CDC also goes against reality when it says that a tick needs to be attached for longer than an hour before Lyme can be transmitted. Oddly enough those individuals that actually work with these parasites, know for certain, that if a tick just gets done biting something and then lands on another host, the fluids containing Lyme could be transmitted IMMEDIATELY.
Yet CDC is the golden wealth of knowledge and the rest of the better informed, more knowledgable world out there is considered the ‘counterculture.’ Odd.
I very much appreciate the effort you made to cover the different perspectives and the myriad issues related to Lyme in an objective, professional and thoughtful manner.My family’s treatment was delayed for years because “Lyme does not exist in California.” Never mind that, even if Lyme respects state boundaries, I travel extensively and lived in CT for four years. Also, it would be interesting for you to do a followup piece on the relative tests and why they don’t catch Lyme, and why the IDSA is so dead set against the new culture test. Bringing this kind of odd and dangerous behavior to light could help put scientists back on the path of helping find a cure. Anyway, thank you again for a balanced piece.
I very much appreciate the effort you made to cover the different perspectives and the myriad issues related to Lyme in an objective, professional and thoughtful manner. As a person whose entire family had Lyme (two daughters who were infected in utero and diagnosed 11 years later) I can say that the IDSA’s stance has led directly to my having to pay our of pocket to treat a family of four with devastating late stage neurological Lyme disease. It broke my family financially, once we got treatment at all, because we were told that Lyme does not exist in California. For some reason doctors use that comforting monologue, and never once asked if we had traveled outside the SF Bay Area (which we had- one growing up in Maine and both having spent 4 years in Connecticut). So many problems with the current situation. Perhaps in a followup piece you could address why doctors gie suffering patients that line that they “coulnd’t have Lyme” and refuse even to test them, why the NYT with the IDSA’s help slandered the Igenex labs and continues to state that this lab (which has a more sensitive test) gives many false positives and is unaccredited (not true) and why they have attempted to do away with the new culture test. It’s as if they don’t want to have to admit they were wrong. I don’t need an apology or an admission, I just need to get better. Thanks again.
“The Effects of Lyme Disease.”http://www.flickr.com/photos/kaiwestphotography/sets/72157633961673773/
@Stephanie V. Thanks for pointing to this photo series. I’m not one of those members of the “counter culture” whom I think are often too vocal, a tad irrational, and a little too attached to all sorts of conspiracy theories. However I am a Lyme sufferer (from Europe). Diagnosed much too late, treated even later after having to battle a few docs who didn’t want to treat because “having 3 positive ELISA and Western Blot tests” doesn’t prove active Lyme infection” (never mind the myriad symptoms I had), I benefited greatly from (oral-only) antibiotic treatment to the point where I was able to be back at work full-time 1 month post treatment initiation, after a 7 months absence. Still, it has been almost seven years since my initial contraction of the disease, and I do have lingering symptoms that, as the article puts it, ebb and flow. I just learn to deal with it, and when it gets too handicapping for me to lead my life, I do a short course of antibiotics combined with anti-malaria medication, and it helps resolve the symptoms for another 6-12 months or so.
Anyhow, two photos in the series really caught my attention — the one on the top right corner, and the one on the bottom right corner. These aren’t pictures of people in hospitals, on wheelchairs, or with an IV drip. Like I said, I feel for these folks but I don’t know whether their apparently severe ailments (e.g. paralysis) are Lyme-related or not — my personal experience with Lyme did not put me in hospital, although the neurological and psychiatric symptoms (e.g. inexplicable anxiety) were pretty severe at some point.
What amazed me about these two photos is that they are depicting people that are just dead tired; laying on a bed or sofa, with a blanket on, during the day. If I were to go through my iPhoto collection of the past 7 years, I can harvest a few photos where I am exactly in that pose, because when the exhaustion hits you, that’s just what you do. You can’t do anything else but power down to conserve energy. It’s not a “severe” symptom, being tired, but I can tell you that it has a significant impact on the quality of your life. It affects your work, your family life, your interaction and availability for your kids, the image of you they have, your self confidence, your ability to make plans for the future, and so on, and so forth. And I believe it’s one of the hallmarks of Lyme. I even wonder if what’s called Chronic Fatigue Syndrome isn’t, in fact, pure Lyme (strangely enough, it’s easier to get a CFS diagnosis, even though nothing is known about the cause, mechanisms, aetiology, of CFS, than a Lyme diagnosis…)
That’s all I wanted to say. Thanks for posting the link.
The following petition was created on behalf of the families devastated by Lyme disease who have witnessed first hand a community of physicians influenced by the CDC’s ongoing disinformation campaign aimed at promoting the idea that Lyme is little more than a nuisance disease. This petition provides evidence to suggest that Lyme disease has been intentionally mishandled.California now leads with the number of signatures on this petition but all fifty states are represented as is 21 other countries. (19,277 signatures and growing)