May 15, 2007
Lyme disease: It's complicated
I have a piece in today’s Washington Post about the battle over Lyme disease. Mainstream science says it’s a readily treatable, tick-borne bacterial infection, but patient advocacy groups and some doctors say it can become a chronic, debilitating ailment. The groups have organized themselves like political activists and aren’t hesitating to wield their strength, much to the chagrin of mainstream medical groups.
One Lyme blog has already posted my e-mail address and a four-year-old photo of me. (Those sideburns? No more.) Should be interesting to see what the day brings.
Update: I should have anticipated this, but this blog has gotten a lot of visitors from people upset by the Post story -- as you can see in the comments, which, of course, people are more than welcome to make. So, in the interest of not being misunderstood, I removed the flippant tone that generally defines this blog. (The original version of this post was titled "Ticked Off?" and had a picture of the cartoon character The Tick -- something I later worried could be considered a taunt, instead of how I meant it, which was a lame pun to describe all the frustration portrayed in the story.) Nobody’s actually contacted me about this, but it seems the right thing to do. If you want flippancy, please direct yourself to anywhere else on the site. Thank you.
Posted by Jason Feifer at May 15, 2007 09:04 AM
Comments
Ha, ha. I thought you meant they posted a picture of you when YOU WERE FOUR. A four-year-old photo.
Now that would have been awesome. "This toddler has no clue what he's talking about!"
Posted by Sara at May 15, 2007 04:53 PM
Honestly your article was more harmful then helpful for patients dealing with Lyme disease and tick co-infections and I can not believe the Washington Post even printed it.
I think before you write your next article on Lyme disease and Lyme patients you need to take the time to interview people who have had Lyme disease for some time and others who have gone un-diagnosed for years as well.
You do not seem to have a real grip on the reality of the disease or the facts and it would help if you took the time to educate yourself on the subject first. Your article was journalism at its worst and it was incredibly irresponsible.
Check out openeyepictures.com with an open mind.
Perhaps you should interview Amy Tan for your next article on tick illnesses.
Marjorie Morgenstern - I went 16 years un-diagnosed with Lyme disease and babesia - I was finally diagnosed in 2006 after years of trying to get medical help and answers and much suffering.
Jason,
We both blog. That's where the similarities end.
I typically fact-check my articles before putting them up there for the whole world to pick apart. If I wrote for the Washington Post, I would do even more fact-checking.
I also let my biases, if any, be well known, rather than trying to masquerade myself as a "neutral" commenter.
Heard of "Google" and "PubMed"? Next time you write on a medical subject you know nothing about, you may want to check out those neat little resources to keep you from looking like a complete idiot.
If you _ever_ get bit by a tick, do yourself a favor and run -- don't walk -- to the nearest Lyme-literate doctor to get treatment that may actually cure you before the illness becomes chronic.
Or, do the Lyme community a favor: Go to an IDSA-guideline-following doctor and get treatment. Then, 2 years later, when you're bed-ridden and wracked by pain, go to a Lyme-literate doctor to help get your symptoms under control, and then when your hand stops shaking long enough to hold a pen to paper, put your writing skills to good use and help the cause find a cure.
Perhaps you aspire to become known as the Jayson Blair of Lyme reporting?
Posted by Kevin at May 16, 2007 01:23 AM
This was an interesting piece to read. I do not have Lyme disease but have been consistently tested and retested since I was 15 as I show similar symptoms. Last summer, my younger sister was diagnosed with Lyme disease but it hasn't been as deferential as some cases.
I don't necessarily understand the uproar with the two schools of thought. A standard diagnosis and course of treatment seems logical. Patients need to have faith that their doctors aren't idiots and will change a course of treatment if the standard is not ideal for the patient.
I'm just surprised that this topic is so controversial
Posted by ジェニー at May 16, 2007 03:12 AM
this was an incredibly irresponsible piece of journalism (if it can even be called that). next time you think about lambasting lyme patients, why don't you actually take the time to interview someone who is afflicted with the devastating chronic form of this illness? there are thousands upon thousands of us, and thousands more who have been misdiagnosed, denied treatment, bounced from doctor to doctor without help.
i can only hope, for your sake, that neither you nor anyone you love is ever forced to deal with this disease. the illness itself (though totally debilitating, life-halting, and sometimes fatal) isn't even close to being the worst part. far worse is the widespread ignorance (both in the medical community and the general public), spread and bolstered by 'journalists' such as yourself, that lyme patients must battle every single day of our lives.
Posted by heather at May 16, 2007 03:41 AM
I am not a "lyme activist". I am a Registered Nurse that educates the general public about the dangers of ticks and how to prevent Lyme disease. I have seen first hand how damaging Lyme disease can be to patients when misdiagnosed and untreated for years. It is quite unfortunate that your article about Lyme disease implies that there is no such thing as chronic Lyme.
Obviously you did not do your homework on this assignment. Shame on you... you get an "F" for failing to educate the public about the seriousness of this disease.
I have had patients in wheelchairs with brain damage and have had patients that have died from chronic lyme disease. Patients died from multiple organ failure and motor neuron disease caused by Lyme and on autopsy these patients had great evidence of the bacteria and the neurological and systemic damage it causes.
There is a great amount of literature documenting the persistence of the bacteria and its damage despite antibiotics. These seriously ill patients only seek treatments to alleviate their pain and suffering.
As a medical professional I have seen patients in all "disease" communities try alternative treatments that may or may not help. What would you do with a serious and disabling illness... lie down and give up? No, you would fight to try to get well until you could no longer.
People with chronic Lyme disease deserve respect. The evidence is there that verifies chronic persistent Lyme disease. You just don't know where to look, because you are an amateur.
Posted by Paula, RN, BSN at May 16, 2007 04:08 AM
A big "oops" Mr. Feifer. You forgot to include mention of the ILADS Lyme treatment guidelines which appear on a Federal Government website, which offer a different diagnostic and treatment plan for lyme and associated tick-borne infections. Here it is:
http://www.guidelines.gov/summary/summary.aspx?view_id=1&doc_id=4836
The bottom line is that when their exist two polarized approaches to Lyme diagnosis and treatment every patient should be informed of the two approaches and be provided a choice. Rather than continue to label lyme patients as "activitists" and making this a political matter, when it is a medical matter, doctors should allow patients to make the choice, after being fully informed of all risks of all treatments or non-treatments.
Let's get to the real issue, namely, insurance companies not wanting to pay for long-term treatment. Who is making our health choices for us? Not you, but the IDSA and your insurance company. If you had a brain tumor and your doctor said it was inoperable, wouldn't you get a second opinion? If the second opinion said it was operable, but you would be paralyzed, well, not such a great choice either. But, at least you would know your options and you could make a choice. The IDSA has effectively eliminated choice in the matter of tick-borne disease.
There exist thousands of studies documenting the devastating effects of untreated tickborne disease, yet they ignore those studies and pick and choose which studies support their theory.
I strongly recommend that anyone who is concerned about their health to become proactive and not rely on IDSA guidelines which deny the reality of lyme. The other guidelines exist, yet, they are not publicized. Why is that? Take charge of your health, become informed, and don't let insurance companies and doctors tell you you do not have a choice. You do.
My entire family, including a very sick 7 year old, have experienced both "treatments" and we are effectively cured because of techniques of ILADS doctors. IDSA doctors told us we had lyme, but it wasn't serious and to just wait and see. Would a doctor tell you to wait and see what syphillis does to your body, as it is also a spirochete bacteria like lyme? I believe that could be classified as malpractice, to let an infection run rampant without treatment. Fortunately, more and more juries are agreeing.
Lyme bacteria has the most DNA of any known bacteria. It changes form and hides in the body, in the heart, joints, brain. It is passed in utero to unborn children and is passed in blood donations. It has been found in mosquitos and biting flies. It has been found in the brains of Alzheimers patients. Frequent misdiagnoses included MS/Lupus/ALS/Alzheimers/autism/bi-polar/fibromyalgia. It is a much larger problem than is admitted and it is time for health officials to investigate why it is increasing at such alarming rates and how to properly test and treat it, rather than to deny its existence.
Stay tuned for an ABC News Special on the frequent misdiagnosis of lyme as "MS" and for a documentary coming out this summer entitled "Under Our Skin."
Finally, Mr. Feifer, why did you not even mention the numerous tick-borne coinfections? You had an opportunity to write about babesia WA-1 and babesia microti, HmE and HgE, bartonella, mycoplasma fermentans, Rocky Mountain Spotted Fever, STARI. Do you know that coinfections are the rule, not the exception? Do you know that several coinfections require different antibiotics/treatments than what is used for lyme? Do you know that babesia is a protozoa like malaria and can result in death in immune-impaired individuals?
Where, please, is your research? What is the point of writing such an article if you do not provide information to the public about how to recognize these illnesses? Our family has tested positive for almost all of these coinfections. In Virgina. They are here, they exist and they cause illness, and most doctors don't even know about them. My ER doctor never told me to be tested for those when I presented with a bulls-eye rash. But, then again, that hospital failed to report my case as required by law so yet another lyme patient falls through the cracks and well statistics, you know what they say, lies, damn lies, and statistics. Certainly true when it comes to lyme.
As this epidemic grows the truth will become known and articles such as yours will be regulated to the junk heap, you know, like those people who kept claiming the world was flat or who insisted the stomach ulcers were caused by stress when two brave doctors suggested a bacterial link. Open your mind, do the research, talk to everyone, not just those who support your view.
Posted by Linda at May 16, 2007 10:16 AM
The reason why Lyme disease is so controversial is that some patients with chronic Lyme disease fail the standard 4-week treatment and/or relapse after treatment is ended. Despite treatment failure, these patients are denied further treatment, because guidelines by the Infectious Disease Society of America restrict therapy to four weeks.
In the case of other infectious diseases, it is standard medical practice to treat as long as therapy is beneficial. For instance syphilis (another Borrelia infection in the same family as Lyme disease) is treated with open-ended antibiotic therapy until the patient recovers. HIV patients receive continued treatment to manage their infection.
Why shouldn't Lyme patients demand the same standards of care?
Unfortunately, Feifer's article about the Lyme disease debate was uninformed, and fail to explain the basic issues at stake.
Posted by Mike at May 16, 2007 10:30 AM
Mr. Feifer,
Judging from some other articles on your blog, I think its safe to assume you're on the liberal side of the political spectrum. From there, it's not too big a leap to also assume that you would be in the camp that believes the "mainstream media" got it completely wrong during the buildup to the Iraq invasion.
If the "mainstream media" can be so wrong, why can't "mainstream science" also be wrong? Don't be so quick to judge the Lyme community simply because it disagrees with "mainstream science."
There was a time when "mainstream science" said the earth was flat. That turned out to be wrong.
Posted by Kevin at May 16, 2007 12:37 PM
that girl on the real world had lyme disease and then that dude threw her teddy bear in the river. how dare you!
Posted by mike at May 16, 2007 08:44 PM
We applaud this move, Mr. Feifer.
For those who may not have seen the original post, in its full snarky glory, here is a copy.
Posted by Kevin at May 16, 2007 09:38 PM
Below is the research you should have done before you printed the uniformed piece on lyme disease that participates in maiming thousands. The day will come when the Infectious Disease Society of America will be exposed for their government ties, their political needs to squash the subject of chronic lyme, and the harm that they inflicted on children and adults in the U.S. population and abroad. What will you have to hide behind then? Better to print a retraction or something discussing what has been brought to light since your first comments.
One thing I learned when doing my Master's Degree was critical thinking skills. That afforded me the ability to discern where truth falls. You see, when there are thousands of dissenting voices, one would have to ask how that would be possible if there weren't some degree of validity. How could such a huge grass roots movement come to be? The question begs to be answered. Then, the investigative process would begin, including looking closely at the reasons for the dissenting voices. This is the part of the process you left out.
Aren't you supposed to be an investigative reporter?
Do you really trust all "institutions" to the degree that you will not hold them to the critical process? Such trust smacks of VERY youthful naivete. I would think that a newspaper reporter would need to question a bit more!
It has happened countless times in medical history that a few enlightened physicians have been persecuted by the mainstream.
Read below for enlightenment.
Mary
victim of lyme politics
three daughters victims of lyme politics
husband victim of lyme politics
family of five with chronic lyme
1. "The Semmelweis Syndrome" Excerpt from the following link: http://www.home-school.com/Articles/phs21-marypride.html
"Semmelweis, ... was the first to discover that when doctors washed their hands before delivering babies, the mothers didn't die of "childbirth fever." At the time, 12 out of every 100 Hungarian women who gave birth died of this disease, which we now realize was caused by the doctors' own unhygienic practices. A doctor would go straight from an autopsy, where he was cutting up a corpse riddled with disease, to the bedside of a woman in labor. With the same hands that had recently been covered with putrid bodily fluids, he would probe around or inside the woman's body in the course of delivering her baby. Naturally, the incidence of infection was high. There were maternity hospitals in Budapest ...where the mortality rate from childbirth fever approached 100 percent - which is why women had their babies at home, if they possibly could.
Semmelweis discovered a simple procedure which put an end to childbirth fever in his patients. So what was the reaction of the medical community? Ridicule. Persecution. The attacks against Semmelweis were so severe that, overcome with depression, he took his own life.
Lister and the Discovery of Antiseptic Medicine
Meanwhile, a man you probably have heard of, Joseph Lister (in whose honor "Listerine" is named), was developing his own theory of "anti-sepsis." The very year Semmelweis died, Lister began performing the first germ-free operations. At the time even the smallest surgical procedure carried a 50 percent risk of death - not due to the surgery itself, but to the seemingly inevitable infections that would follow (again, transmitted by unsterile instruments and unwashed doctors).
The results of Lister's innovations were stunning. Patients who were expected to die, didn't. And again, persecution was his immediate reward. You'd never know this from reading the World Book Encyclopedia entry, which only mentions Lister's contributions and his eventual honors, received decades after his initial discoveries. But Lister's discovery, and his theories that germs caused wounds to get infected, earned him immediate, scathing, constant denouncements from the day's top medical authorities. If you read a biography of Lister, you'll probably be awed, as I was, by his remarkable perseverance and self-sacrifice as he continued striving, year after year, in the face of incredible discouragements.
Eventually Lister did prove to everybody's satisfaction that he and Semmelweis were right - but only after tens of thousands had died needlessly as a direct result of their doctors' refusal to examine the evidence for themselves.
Why...did those doctors not listen to poor Semmelweis?" ...Because they didn't want to admit they had been responsible, even unwittingly, for harming their patients. One doctor did believe Semmelweis. He had delivered his daughter' baby with unwashed hands, and she had died of childbirth fever. Stricken with remorse, he killed himself. Meanwhile, his thicker-skinned colleagues merely continued killing their patients.
Doctors Can Be Wrong
It is important for you to understand this, ....Doctors are not always right. In fact, they have often been wrong. But they are trained to be certain that they are always right. This makes it very hard for them to change their minds about anything."
2. Then there is the story of Drs. Robin Warren and Barry Marshall who showed the bacterium Helicobacter pylori plays a key role in the development of both stomach and intestinal ulcers. Marshall suffered a lot of problems getting the medical establishment to believe him, and it took at least 20 years, during which time he suffered persecution by the medical community. Warren and Marshall eventually won the Nobel prize for their contributions to medicine.
3. Also the following critique of Medicine's 10 Greatest Discoveries by Meyer Friedman (Author), Gerald W. Friedland (Author)
Discussion found at the following: http://www.amazon.co.uk/Medicines-Greatest-Discoveries-Yale-Nota/dp/0300082789
"I read with extraordinary excitement Medicines 10 Greatest Discoveries by best-selling author Dr. Meyer Friedman and his co-author Dr. Gerald Friedland. They brought to life the intriguing stories of scientists who made the worlds most significant contributions to medicine. Crawford Long, for example, was severely bruised after a party in which he and the other guests were intoxicated by inhaling ether. Yet he felt no pain. This realization led him to try successfully using ether as an anesthesia during surgery. Before then surgery was performed with no pain killers. Torture! The authors spared no detail explaining the barriers each had to overcome to bring the field of medicine closer to where it is today. Persecution and even death at the hands of religious leaders. Shunning by medical colleagues. Withholding of research opportunities. In some cases Medicines 10 Greatest Discoveries gave credit to scientists long forgotten. For instance Ross Harrison, inventor of tissue culture, attended both Johns Hopkins and Yale universities. Neither school had commemorated him nor knew of his connection to tissue culture until the authors pointed out this fact to their presidents."
4. Also consider the publication at the following link. There you will find Persecution of Innovative Therapies. - Politics in Healing: The Suppression and Manipulation of American Medicine - Review - book review
http://findarticles.com/p/articles/mi_m0ISW/is_2001_June/ai_75178719
5. Additionally, see a sneak peek at Science, Money, and Politics: Political Triumph and Ethical Erosion. By Daniel S. Greenberg. Published 2001 by University of Chicago Press.
Link to book review at the following: http://content.healthaffairs.org/cgi/content/full/21/3/274
Excerpt: "Dan Greenberg began covering science in 1961 as the first "News and Comment" editor of Science, published by the American Association for the Advancement of Science. From 1971 through 1997 he wrote and published his own fortnightly Science and Government Report. He has written a marvelous book, jam-packed with detailed analyses of federal science agencies crying all the way to the bank. His scope is broad and includes the two agencies that support academic research—the National Science Foundation (NSF) and the NIH. Major themes include the following: Anxiety about funding crises for the support of scientific research are out of whack with the reality of sustained budget increases over time; the rhetoric of crisis enlivens the scientific community’s misleading presentation of its case to Congress; more funds are never enough; and the fear of a fickle public drives continuing attention to "public understanding of science."
Although Greenberg pays more attention to the NSF than to the NIH, his chapter on "The Ethical Erosion of American Science" focuses exclusively on medical science. He deplores the penetration of pharmaceutical industry money into academic medical research; examines controversies at both the Journal of the American Medical Association and the New England Journal of Medicine; reviews recent turmoil within the world of institutional review boards (IRBs), which were instituted to protect human subjects of research; and concludes with an account of the death of Jesse Gelsinger, an eighteen-year-old enrolled in a gene therapy clinical trial at the University of Pennsylvania. His judgment? "If their ethical senses were outraged by these events, the major institutions of science successfully concealed their distress from public view. Comfortable within the scientific ghetto, deft at raising public expectations and thereby stimulating generous support, the politicians of science are not comfortable with the seamy underside of their glittering enterprise. But they are not moved to do anything effective about it."
Let's turn now to the story of the AIDS epidemic and the role of patient activists.
6. See the following source for the below discussion and excerpt: Against the Odds: The Story of AIDS Drug Development, Politics And Profits by Peter Arno and Karyn L. Feiden.
Reviews: Editorial Reviews
From Publishers Weekly:
Freelance writer Feiden and health analyst Arno illuminate the profound effect that the AIDS patient community has had on the process of pharmaceutical testing, treatment and approval. Ten years into the epidemic, patient-activists have become increasingly involved, aware and influential in their interactions with pharmaceutical manufacturers, federal regulatory agencies and international underground trafficking. The book details how the travails of AIDS therapies have caused the emergence of parallel-track testing and community-based clinical trials, redefined placebo standards and private-use pharmaceutical importation, and recast the Orphan Drug Act and medical journal publication embargos. Extortionate pharmaceutical pricing and the absence of quality care for the disenfranchised are only a few of the book's sad revelations. This is an incisive view of how health activism has become an invaluable tool in dislodging the bureaucratic U.S. health-care system. Most alarming is the assessment that the tragedy of the stalled AIDS response could be easily replicated by a federal health-care system as yet ill-equipped to respond to a national emergency.
Copyright 1992 Reed Business Information, Inc.
From Library Journal
This is a fascinating account of how government and drug company bureaucracies have held up the development of such life-saving and life-prolonging AIDS drugs as AZT, ddI, bactrine, pentamidine, ganciclovir, and compound Q. At the same time knowledgeable activist and patient communities, frustrated and impatient, work heroically to change the policy and procedures of drug testing, pricing, and availability, thereby inspiring a new wave of health activism. Like Bruce Nussbaum's Good Intentions: How Big Business and the Medical Establishment Are Corrupting the Fight Against AIDS ( LJ 12/90), this scathing indictment of our political and medical establishment points up an unforgivable lack of leadership. Strongly recommended for all collections.
- James E. Van Buskirk, San Francisco P.L.
Copyright 1992 Reed Business Information, Inc.
7. See also, And the Band Played On: Politics, People, and the AIDS Epidemic
by Randy Shilts and William Greider
Book review excerpts:
From School Library Journal
YA Investigative journalist Shilts em ploys a case study approach to expose the alarms, disregard, and misinformation about AIDS that has been promoted by the government, gay and straight organizations, news agencies, and medical researchers. He indicts the political agendas of government officials, ego- driven scientists, and profit-conscious blood bank executives, all of whom impeded early AIDS research. In addition, he gives a fascinating account of the detective work needed in discovering new diseases. Although focusing his re ports on San Francisco and New York's gay communities and research centers in Atlanta and the Washington, D.C. area, Shilts dramatically explores the international problem of AIDS. Students will use the index for assigned papers, but it is the volume of information and the vignettes about real individuals that make compelling cover-to-cover reading. Alice Conlon, University of Houston
Copyright 1988 Reed Business Information, Inc. --This text refers to an out of print or unavailable edition of this title.
From Library Journal
In one of the most important books of the year, Shilts, who has been covering the AIDS crisis since 1981, sets a gripping narrative of human tragedy against a background of political and scientific controversy. His implication: the AIDS epidemic in the United States might have been averted had it not been for resistance from the government, scientists, the media, and the gay community. Shilts has the ability to draw the reader hypnotically into the personal lives of his characters. That, and his monumental investigative effort, would have made this a best-selling novel if the contents weren't so horribly true. Highly recommended. Judith Eannarino, George Washington Univ. Lib., Washington, D.C.
Copyright 1987 Reed Business Information, Inc. --This text refers to an out of print or unavailable edition of this title.
8. There are those enlightened few, as always, that strive to make favorable change in the status quo. See the below article at the following link:
http://muse.jhu.edu/login?uri=/journals/journal_of_health_politics_policy_and_law/v026/26.2havighurst.pdf
Havighurst, Clark C.
Evidence: Its Meanings in Health Care and in Law
Journal of Health Politics, Policy and Law - Volume 26, Number 2, April 2001, pp. 195-215
Duke University Press
Journal of Health Politics, Policy and Law 26.2 (2001) 195-215
"In April 2000 the Institute of Medicine (IOM) and the Agency for Healthcare Research and Quality (AHRQ) jointly hosted a one-day workshop to explore an intriguing and important intersection of medicine and law: the courtroom presentation of science-based medical evidence and expertise. This workshop was inspired by a concern that legal uses and interpretations of science-based medical evidence, particularly population studies and the findings of controlled clinical trials, may diverge substantially from the uses and interpretation of that evidence by the medical and health care researchers who produce it and of the practitioners and health plans that use it in making clinical decisions and policies. Recognizing that a preliminary discussion among professions was needed even to describe the nature of their differences, the IOM and AHRQ, at the instigation of John M. Eisenberg, director of AHRQ, convened about twenty clinicians, epidemiologists, health services researchers, health plan executives, practicing and academic lawyers, jurists, and social scientists in the field of legal medicine ..."
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Surely, with such examples from numerous cases of misinformation, distortion, lies, and ethical violations, one could not POSSIBLY trust all government agencies and medical institutions at face value!
My own investigation into the truth began with a very simple realization. I was very sick. Bed ridden. When given antibiotics, my bells palsy went away and the neurological and arthritic symptoms improved. But then I was denied antibiotics by the medical "industry", and I completely relapsed.
My body was the "in vivo" study. I sought a lyme literate medical professional, who continued my antibiotics, in different combinations and strengths. I improved further this time. It continues to be the case that if I am denied antibiotics, I regress quickly, four years later.
So, in the beginning, I had to ask....what is going on? Why the barrier to getting treatment. The truth of chronic lyme was indisputable. I just needed to find out why I was denied treatment.
Enlightenment followed.
Jason, if you so wished, I could send you a lengthy article I have been working on regarding the politics of lyme disease, explanations for the top research scientists blocking information on chronic lyme disease, including a data base of peer reviewed, annotated medical articles establishing chronic lyme disease.
I you wish to become enlightened, and print a newer version of the politics of lyme in the Post, let me know, and we can begin a friendly exchange of questions and answers. It's up to you and what posterity will think of such articles as "There's No Neutral Ground in War Of Information About Lyme Disease." You can choose to be on the cutting edge. You can choose to be part of the fight for justice.
Mary
I am confused as to why you are receiving so many passionate, angry responses. Obviously, this outpouring confirms the volatile nature of Lyme disease treatment and the parties involved.
However, the comments I have read seem to be missing the mark. The issues you brought to light have nothing to do with what is "right" in the minds of Lyme sufferers. It seems these folks are very protective of their disease.
I was told that I, too, contracted this infection. I was dosed with massive amounts of antibiotics and enough supplements to kill a horse. My weight had dropped to 103 pounds, yet I was taking 30 pills a day and I could barely force myself to eat (what Lyme treatment advocates would call a "herx" - apparently any ill effects one may feel is rationalized as confirmation that the "bugs" are being killed. This is a dangerous notion, and completely irresponsible). I was so confused as to the proper protocol, that despite my downward spiral, I followed the LLMD's instructions with disastrous results. I developed a wicked allergy to an antibiotic and ceased treatment. My GP explained that if a person continues to suffer symptoms, it is more likely that the disease has moved into another realm; existing in the body as a chronic condition that is no longer infective. Therefore, treating the symptoms is the best approach. I tend to agree his view, especially after my horrid experience.
Your article was necessary. There are many lost people out there who are being taken for a ride by greedy "LLMDs", spending their life savings with the hope of eradicating this disease, and often getting worse or developing complications from the medications.
Unfortunately, a great deal of misinformation exists on the internet, and misinformed souls may get drawn into this vortex. There is no other disease in existence that manifests as so many varied, multi-system symptoms. Doesn't that signal a warning bell? I have seen Lyme sufferers urge patients who have already been diagnosed with MS to stop taking steroids - with the rationale that steroids exacerbate Lyme. Steroids are often the only treatment option for MS patients. This is scary. I have also seen people ask about a symptom or condition they are experiencing; no matter what the issue may be, many Lyme sufferers respond, "it is probably Lyme". This is is harmful.
So thank you. Your coverage is long overdue, and perhaps it will eventually pave the way for logical discussion.
Posted by concerned citizen at May 17, 2007 01:27 AM
Concerned Citizen said: "The issues you brought to light have nothing to do with what is "right" in the minds of Lyme sufferers. It seems these folks are very protective of their disease."
That's pretty inflammatory. We are trying to be allowed the opportunity to have a choice of medical treatments so we can rid ourselves of this disease. Nobody wants it.
Thousands of people benefit from more than one month of antibiotics, inlcuding my family. All treatments should be offered with full disclosure. I'm sorry you had such a bad experience. There is still much to be learned about this subject, but at least LLMD's are trying to learn and do research, and to open minds, whereas IDSA refuses to participate in the debate. Science and medicine are not absolute. Just look at HIV 25 years ago. Much of what is being learned about lyme is based on immune system studies of HIV. There are no absolutes, only choices of bad and worse, in many instances.
Our LLMD's are not greedy at all. We have a $20 copay. Others were dropped by insurance companies because they ordered too many tests. It's all about money, yes, but from the insurance side of things.
concerned citizen:
i'm sorry you had such a bad experience. just because you responded negatively to abx, though, doesn't mean you don't still have a chronic persistent form of lyme. many people are allergic to various antibiotics, or for whatever reason can't tolerate them. i, too, am one of those people. consequently, i've chosen to treat my lyme with natural (herbal) antibiotics and immune-boosting supplements, diet, and lifestyle changes.
LLMDs are not greedy (far from it). insurance companies, backed by the IDSA, are the greedy ones. this is precisely the reason that many LLMDs cannot take insurance. if the mainstream medical community recognized other treatment options as valid (ie, the ILADS guidelines), then insurance companies would cover LLMD visits without question, and doctors who treat chronic lyme would not be putting their careers on the line every time they see a lyme patient.
Posted by heather at May 17, 2007 01:21 PM
Just wanted to clarify a couple of my remarks:
I don't believe all LLMDs are greedy. Unfortunately, there are many who are taking advantage of desperate patients. I've heard so many accounts of people being charged $900 for an initial visit. $75 for a phone consultation. If I had any medical issues, the LLMD would tell me to either go to the emergency room or see my GP. How is this helpful? And unfortunately, this circumstance is quite common. LLMDs who should have their licenses revoked end up being protected under the same umbrella as the good ones. This is a serious problem.
And this was my point about the article. A discussion needs to take place to avoid these complications.
As I see it, it doesn't matter what name my illness is given. I am fine with treating my symptoms. And why? Because I'm feeling great. I don't see the benefit in such harsh treatments when the bottom line is you could always have a "relapse". Or you will have complications regardless. I've accepted this and moved on.
Posted by concerned citizen at May 17, 2007 06:33 PM
I'm sorry you took the direction you did in your article because it will prolong the suffering of so many people.
You are not correct that mainstream "science" says Lyme is readily treatable. Of course it's treatable, but up to 63% of patients fail mainstream treatments. No wonder patients have turned to ILADS specialists, who have a much better track record with the chronic form of Lyme and co-infections. Wouldn't you? Dr. Jones, currently on trial in Connecticut, has a 75% or better success rate with his ILADS-style treatments.
Patients with chronic Lyme have been all but abandoned by mainstream doctors. Some of them turn to possibly risky alternatives out of desperation. If you were in their shoes, maybe you would, too.
Testing is equally problematic. Researchers at respectable institutions like Johns Hopkins have decried the insensitivity of mainstream medicine's ELISA, which can miss more than half the cases, and is responsible for consigning many people with Lyme disease to a lifetime of untreated chronic illness and misery.
I thought you would be interested in this little bit of information below:
The ILADS guidelines outclass the (previous) IDSA guidelines in all but 2 of 11 categories. Since the ILADS guidelines were published in 2004, several more studies on longterm treatment for chronic disease have been completed (Fallon, Donta, Cameron). They all found longterm treatment can help.
I was on the NIH Advisory Panel for the New England Medical Center study that is widely quoted as supporting short treatments, saying long, "aggressive" treatments don't work. The evidence from that trial equally supports the claim that the treatment they chose to test was not long enough. In fact, if you look at the worse patients from that trial, they actually improved more on the treatment than the less ill patients, but the researchers chose not to highlight that fact. The trial actually should not be used to prove anything about other treatments that were not tried, including longer treatments and combination treatments. However, it serves certain people (not patients) to have those conclusions promoted, so there they are.
I wanted to post Table 1 from the ILADS Guidelines, which is a Comparison on key IDSA and ILADS guidelines, but the formatting would not come through. I recommend people check it out for themselves on Page 11, ILADS Guidelines, www.ilads.org
44. Table 1. Comparison of key IDSA and ILADS
guidelines.
This is a biased article. I am a molecular biologist, and recently managed to figure out, with the help of the internet, that my husband's worsening chronic illness was Lyme, now confirmed by western blot (which we paid for out-of-pocket because his PCP would not order it). His primary care physician relied on the faulty, insensitive "first tier screening" ELISA test to rule out Lyme in 1999 when my husband's symptoms began, and now here in 2007 we're finally beginning treatment, after much nerve and muscle damage. My husband has continued to work full-time as a scientist during all this, despite much pain and fatigue, and I fail to understand the dismissive attitude so many have adopted toward this disease. We don't laugh at the suffering and long treatment of cancer patients, even though it may not be successful in the end - why on earth would we stigmatize a disease that anyone can get merely by going outside in the summertime? I have read the primary medical literature on lyme and analyzed the data myself, and can confidently state that the "mainstream view" propagated by the Infectious Disease Society of America (IDSA) is not accurate, not scientifically sound, and is doing great damage by creating a large pool of both undiagnosed, as well as diagnosed but inadequately treated, patients. I will not speculate here on why these recognized experts are so impervious to the facts of this desease, but it is perhaps worth an investigative journalist's attention. The current and future cost in resulting suffering and disability is huge. Articles like yours only serve to reinforce the respectability of this faulty view in the minds of the public, and will set back the eventual recognition and resolution of the problem considerably. You are now somewhat responsible for rectifying this, and I would suggest that you do more research, get a clearer picture of what is really going on, and then publish another high-profile article correcting your stand and explaining why it was so easy to be persuaded toward the IDSA view. That would help others, who have fallen into the same trap, rethink their views, and set us all a good example of not defending, but correcting, an error that was made publicly and is causing harm.
Thank you for your time.
Laurie Osborn, Ph.D.
what a wonderful, articulate, and inciteful comment, laurie. thank you so much.
i agree one-hundred percent, and would especially like to emphasize this:
You are now somewhat responsible for rectifying this, and I would suggest that you do more research, get a clearer picture of what is really going on, and then publish another high-profile article correcting your stand and explaining why it was so easy to be persuaded toward the IDSA view. That would help others, who have fallen into the same trap, rethink their views, and set us all a good example of not defending, but correcting, an error that was made publicly and is causing harm.
ABSOLUTELY.
Posted by heather at June 2, 2007 02:27 PM
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