Greed & Avarice


From: Sandra Smith,
Organization: Lyme Awareness Now!
This e-mail was sent along with many other from Lyme patients to media and government officials on 15 Nov 99. Lyme Disese can be very painful and is often misdiagnosed as Fibromyalgia, Lupus, ALS, MS, CFS, Parkinson's Disease and other, as there is more money and less politics involved with these other symptoms and illnesses. Lyme Disease has been ignored to death for over 20 years and is in every state except Montana (or they don't report it).  Read for yourself, a friend or loved one, Lyme Disease is not easy to diagnose and treat and requires Lyme literate doctors, i.e. ones who treat Lyme patients on a daily basis. Sorry, this is long, but there is no simple short way to tell the story of Lyme Disease.
I am writing to make you aware of the hundreds of thousands of patients world wide who are being denied adequate medical treatment, condemned to living the rest of their lives, seeking minimal treatment to keep from ending up as Alzheimer's patients, or worse or as suicides due to the physical and emotional pain suffered daily. These patients are suffering from active infection know as Lyme Disease, that a very small percentage of the medical and research establishment would have you to believe is nonexistent after a short course of antibiotics.
One of the biggest names in the group of naysayers, is Alan Steere, and I do not give him the title of doctor as I believe he is not due that honorific because he single handedly has caused harm and even death to so many victims of this disease both directly and indirectly, that he does not deserve to be called doctor. Quack maybe, but not doctor. And along with him in the guilt for not standing up for the truth include all the sycophants who uttered his mantra of over diagnosed and over treated in connection with necessary medical treatment for people diagnosed with Lyme Disease even with both ELISA and Western Blot testing confirming the disease.  Because, if Lyme patients are lucky enough to get positives on both these limited tests, then we're told they are "false positives" and we are only just suffering from "Post Lyme Syndrome", or we're addicted to antibiotics.  Other idiotic statements attributable to Alan Steere, his sycophants, which include Yale, and members of the United States Government, all for their own reasons.
Let me explain the testing referred to as ELISA and Western Blot testing. The CDC states that Lyme Disease is a clinical diagnosis because these tests are so inaccurate. In fact the government tested labs on two different occasions sending specimens known to be positive for Lyme Disease, only to have over 50% return negative findings both times. Only a handful of labs in the United States are capable of diagnosing Lyme Disease due to excellent scientific practices. So when the average non informed patient is tested for Lyme by a non Lyme literate doctor, with labs sent to a "normal" lab, the likelihood of the testing reflecting the patient has Lyme Disease is zero. Yet the patients are consoled because they have tested negative for Lyme Disease, and some years later after unnecessary surgeries, and or other expensive medical procedures do they finally learn the truth about the Lyme disease testing, but often it's too late to spare them life long illness and debility and often disability.
It is also well known in the Lyme Community at large that the CDC left off two bands specific to Lyme because when Steere and company were testing patients to find out the reactive bands that showed up the most, these two bands did not show up as often as the ones in use for the Western Blot testing. However, that sample was taken from a very specific part of the population and not across the country, and many people tested have reacted to these two specific bands reactive only to Lyme bacteria, yet have been told they did not have Lyme Disease because they had these two reactive bands along with enough others to test positive had these bands not been left off. Today, 20 years later, it's still true, that this testing excludes these two specific bands and is totally negligent of the CDC to allow them to continue being left off. The poor testing still 20 years after the rediscovery and renaming of Lyme Disease, is inexcusable unless our government does it on purpose to keep from having more Lyme endemic cities and states.  There can be no other reason for letting this inequity in testing remain. Lyme literate doctors and labs know to request or show all reactive bands, thus the Lyme literate physician who knows of these specific bands being left off (and they all do know) can get a truer picture of the patient's tests to support the clinical diagnosis of Lyme Disease.
The ELISA and Western Blot testing is "supposed" to be used in support of a "clinical diagnosis" and the CDC states that the results of these tests should not be relied upon to dismiss Lyme Disease as a diagnosis. The two tests measure the body's immune system reaction to antibodies specific to the Lyme bacteria, spirochetes. However, the spirochete has the ability to shed it's outer surface and hide in the tissues so that the body's own immune system does not know the invader is there and DOES NOT make the antibodies needed to register on these tests. This is why Lyme Disease is still a clinical diagnosis based on extensive medical history, exam, and the physician's knowledge of Lyme Disease and the many ways it presents itself even in the same family, infected from the same source at the same time. Also treatment for Lyme is equally individualized based on the symptoms predominant in each patient, there is no cook book recipe for treating Lyme Disease just as there are no cook book tests that can identify Lyme Disease 100%.
For the most part, the doctors you would think to be most involved with diagnosing and treating Lyme Disease, would be infectious disease doctors, not so. Not all, but most of the doctors in this specialty do not diagnose and treat Lyme Disease. Why? Good question! It seems that with all of the repetition of the Steere mantra, of over diagnosed and over treated, plus the numerous articles of his published in medical journals, and the fact that it is well known that to diagnose and treat Lyme Disease is in fact, death to your career, the infectious disease doctors don't want to touch it with a hundred foot pole and put it in the category previously held by Fibromyalgia, basically a waste basket disease to the infectious disease doctors. This is also true of many other doctors as well. They are extremely guilty of knowing little or nothing about bacteria and of believing everything they read in medical journals.  The editors of the journals who are also doctors for the most part, accept far too many of Steere's articles not based on fact or scientific test, but on his own opinion! While turning down many articles that give opposite information to what Steere has to say, so many doctors who might be persuaded to at least be open minded about Lyme are not. The medical journal articles give them a bias against Lyme Disease, and they simply repeat the "stupid" things Steere has had to say over the years. Most of the doctors graduated from medical schools in the last 20 years do not have a solid background in bacteria and infectious diseases because after all we had antibiotics and we had kicked booty with them for so many years, it just wasn't practical to teach or learn much about bacterial infections.
I am not talking about an exotic disease which is not known, I am talking about Lyme Disease. For over two decades now, we've been listening to people like Alan Steere who have been stating that Lyme Disease is both over diagnosed and over treated.  To be honest living in Texas, it never crossed my mind to suspect this disease in my twenty-some odd years seeking better health which really started at age 14 though I didn't know it at the time, with a trip to a large hospital due to swollen neck glands and pain which was described as "a mono like illness" and was never treated because I did not have a temperature.
Alan Steere, originally worked with one of the women, Polly Murray, (author of THE WIDENING CIRCLE), who brought the number of children being diagnosed with juvenile arthritis in a relatively small community to the attention of the Public Health Officials. Alan Steere of late has been given all the credit for his being so astute and wonderful to have discovered Lyme Disease when he did not.  He has mistakenly received accolades, gold coins, and other compensation for his role in discovering in error Lyme Disease since it was discovered by Willy Burgdorfer and named after him, Borrelia burgdorferi Bb, and Polly Murray and the other woman did their own sleuthing to make the Health Department aware of the strange illness affecting their community.
The problem is, if you are unfortunate enough to have Lyme Disease or to be a physician on the front line treating Lyme like Joseph Burrascano, Jr., M.D., then it's a completely different story.  Dr. Burrascano, at this time is facing a board of inquiry due to an anonymous complaint concerning his treatment of Lyme Disease patients. He is the physician who risked all in 1995 going before the Senate Sub Committee hearing and telling the truth about The Lyme Disease Conspiracy. For 12 years he has published guidelines for other Lyme literate physicians (i.e. those on the front lines treating Lyme patients on a daily basis vs. researchers or academians) who are compassionate and willing to risk all by diagnosing and treating Lyme Disease patients.  Most of us cannot get help of any kind and are written off as hypochondriacs even when the physician's are aware of Lyme Disease. They will not diagnose and treat and they will not tell the patient that Lyme Disease is a differential diagnosis for the symptoms they report to the doctor.
At first not all that much was known about Lyme in the mid 70's when it was "rediscovered and renamed" since it's been known about since Panolethic times. Recently Dr. Kenneth Leniger, using high-tech DNA amplification found evidence of this bacterium dating back to Paleolithic times. The doctor has stated that even though this agent was not known to exist until recently he is confident it has been affecting us for millennia.
Why won't doctor's diagnose and teat Lyme Disease with few compassionate exceptions? Alan Steere, Yale, and like minded cronies have been publishing medical papers based on opinion not fact, and the often repeated phrase describing Lyme Disease as being over diagnosed and over treated, has caused more then one physician to lose their license to practice medicine for daring to go against this medical clique of power. Dr. Burrascano's current problems to with Lyme Disease can be laid at the door of this same clique directly or indirectly, the result is the same.  Dr. Burrascano, a compassionate human being trying to help treat his patients to the best of his skill and knowledge is going against the clique, and it's been long enough from his testimony before congress, that whoever brought the anonymous charges feels like they can discredit Dr. Burrascano now.
Some doctors have even stated that they have read Steere's limited treatment for Lyme Disease and acted accordingly only to find their patients returning later with worse cases of the disease as it has taken over their bodies. Lyme Disease is a multi-systemic disease, which can and does affect every organ in the body from the brain to the bones. It often starts with what people believe is a case of the flu, along with aching muscles and headaches. After a while the person realizes they are over the flu, but they still have symptoms of the flu. Lyme Disease can present so differently in members of the same family, infected at the same time, and from the same source, and because there is no cook book recipe for treating Lyme Disease, contrary to published reports in medical literature to the opposite, even the members of this same family may all have to be treated with different antibiotics, combinations, doses, and lengths of time as everyone's immune system is different.
The facts are these, soon after the Lyme Disease was being investigated, we learned of AIDS. And when the government finally devoted the sum of money needed to do something about AIDS, the horrible infectious killer disease, it was too late for too many people. It was right that the money was allocated to AIDS, don't misunderstand me, but in the process everyone because of the money became AIDS researchers overnight because of the reality of the tremendous amount of money available for research when many were struggling, so Lyme Disease got swept under the carpet becoming the unwanted child, and it took until last year for the NIH to even begin a study based on people with late stage fully disseminated Lyme Disease. And, all of the researchers working on the study are in the Steere camp except for the head of  the program, Mark S. Klempner, M.D. who had this to say after the NIH study was started and patients found who could meet the stringent criteria of the study, but who are not representative of the vast majority of people suffering with late stage Lyme Disease, in that they are not able to test seropositive on the ELISA testing.
This article originally appeared in the January - March 1993 Issue of the Lyme Times
Six months into the extramural arm of the NIH funded chronic Lyme disease study, the research team is making wonderful progress, according to principal investigator Mark S. Klempner, MD, of the New England Medical Center (NEMC) in Boston.  While no conclusions are possible this early, they are receiving some very strong impressions from the patients they are seeing. Klempner shared some of those impressions in an interview with the Lyme Times.
The study has five basic goals: to determine whether a specific treatment regimen benefits patients with chronic Lyme disease; to identify, if possible, evidence of ongoing infection; to investigate the possibility of coinfection; to find new diagnostic tests; and to determine whether there are specific markers which predict who will, and who will not, respond to the treatment regimen.
Most remarkable, according to Klempner, is the extraordinary degree of debility they are seeing in this group of patients. Prior to this study, no one had profiled what chronic Lyme disease patients really complain about. The term "vague complaints" has been widely used as a pejorative to trivialize the patients' symptoms.  Now, using a well established and professionally respected scale which measures health related quality of life, the NEMC doctors are discovering that patients do indeed experience striking limitations from chronic pain.
"Their complaints are not 'vague,'"states Klempner, "but, on the contrary, are very quantifiable.  These patients are in a condition worse than patients with marked congestive heart failure. They are two and a half standard deviations [a statistical term] from normal - among the most deviant of any
chronic illness."
Mark S. Klempner, M.D.
Also, I believe two other factors influenced the ignoring of Lyme Disease and equating it to a case of the flu. One being the government did not want to admit that we, the citizens of the United States and the world, had two infectious disease for which no cure was known. Secondly, I believe that too many in power believed there would be a tremendous drain on our nation's and our world's medical resources and so determined to ignore Lyme Disease as much as possible and let be known that it was a regional thing so the rest of the nation would not have a clue that this could possibly happen to them too.
Economic factors play a big role now in why very sick Lyme patients are not getting necessary medical treatments. The HMO's came into being around the same time or shortly after and even treating Lyme with antibiotic infusions outside the hospitals in the patient's homes was more costly that the bottom line people wanted to be paying. So, they along with the doctors in the HMO's allowed Alan Steere to be the voice for Lyme Disease and began paying the Lyme Disease experts for their testimony in cases involving Lyme Disease.  Alan Steere, and his association with Yale, made him a favorite son, so to speak, and Yale along with Steere became a font of misinformation on Lyme Disease, stating that it could be cured with 10-14 days of antibiotics, or if there was heart or arthritic involvement, 30 days of infusions.  This never ever took into account the hundreds of thousands of patients never diagnosed and never treated for Lyme Disease who had it most of their lives and found out by accident or found a physician who would tell them that Lyme Disease was a differential diagnosis for their by now plethora of symptoms.
Not only would more people be identified as having late stage Lyme Disease, but others would be caught soon after infection when there is still a chance to be cured, before the disease is fully disseminated throughout the body. Right now only a handful of antibiotics are known to be effective in treating Lyme Disease, and they are not expensive.  What becomes expensive is continued treatment with I.V. antibiotics as seems to be required after the Lyme has gone so long undiagnosed and untreated. Truthfully, many of us are no longer able to work through no fault of our own and are kept that way by insurance companies denying the antibiotic infusion so necessary for our improvement and possible remission.
Why? The Steere faction and other naysayers are hired by the some of the insurance companies to review files of patients who have Lyme Disease, who have tested positive, and once a doctor from Yale, or Steere, and others, review the files, even people positive on both tests are said to be testing false positive and the doctors deny necessary medical treatment based on their opinion reviewing medical records but never examining the patient they are stating does not need necessary medical treatment even though Lyme Disease is based on clinical diagnosis! The doctors and insurance companies have denied treatment because there is "no known cure" for late stage Lyme Disease, but because is a multi systemic bacterial infection any idiot in the medical profession knows that antibiotics can and do work effectively on bacterial infections. Yet, the insurance companies also deny treatment with antibiotics and infusions of antibiotics calling this "experimental medicine", how insane!  A plus B equal C. Bacterial infections are helped by antibiotics so why not let the patients have them and possibly allow them to go into remission? The bottom line, of course! Now that there are so many people who never received immediate attention or only received 10-14 days of antibiotic treatment, we have a sub culture of very sick people with a Pandora's Box full of medical problems. Not only is it next to impossibly to get the correct diagnosis unless you are fortunate and see a Lyme literate physician, once you receive the diagnosis, it's next to impossible to receive the necessary medical treatment with antibiotics. We actually have greed and avarice, both gods of Alan Steere to thank for this state of affairs. His overused mantra of over diagnosed and over treated, when speaking of people with Lyme disease, it's diagnosis and treatment, plus his own made up "Post Lyme Syndrome" that has no basis in scientific fact. He just determined that people who are still sick after the minimum amount of treatment are suffering from this made up syndrome he coined, and or that we are simply "addicted to antibiotics, also a Steerism, if you will.
I began having leg pains at 16, but ignored them the best I could by taking hot oil baths before going out on a date after working. At age 28 after what I thought was a bout of the flu, the aching in my muscles and joints lingered so long that I sought out a doctor to check for arthritis. The findings were negative for RA. and I was sent to a pulmonary specialist as one doctor suspected I had arcoidosis.   The pulmonary specialist did not agree on the basis of what is called an ACE test.  But he did tell me that I should be glad I had so much pain in my joints because it would probably spare my other organs. I didn't understand what he meant and didn't know enough to ask at that time, but hindsight tells me now that this doctor had to suspect or know that I had either Lyme or Lupus at the time, but never bothered to let me know about it. At age 28, mostly, I just got on with my life and dealt with the pain as best I could utilizing Tylenol until that became a problem for me. I had been offered steroids, but knew better than to take them unless a life or death situation (due to my pets having been on Prednisone). Once in a while I would be tricked into thinking it was gone forever but it would come back, just like a bad nightmare. At age 30 I started having upper back problems, at 35, the first acute lumbar sacral strain on a previously injured side, and at age 39, a second acute lumbar sacral strain. Only the second time the pain spread to encompass my whole body after a few weeks.  It was 8 months before I could get into see a doctor considered a specialist with Myofascial Pain and also Fibromyalgia Pain Syndromes. By that time it was too late, the pain had spread to cover every inch of my body waking and sleeping, and my sleeping had been steadily declining since age 28 at the onset of all over joint pain.
Later, through more hindsight, I realized the headache from hell I'd been having since age 19, prior to being involved in a serious car wreck were caused by the Lyme Disease. For all the years I suffered so much I blamed it working in a factory office combination my first job out of high school. Nothing would work on the headaches, none of the migraine medications would touch the pain. The first one I had for over a month but never made the mistake of telling any doctor that fact again after the first time I told it and got such strange looks.  But, it was over a month long, and I could understand even then, though it was not my mindset, why people could be driven to commit suicide due to never ending pain. I had these headaches most of the month with a few days where I was headache free for most of my life.
In the last decade I had seen about 20 doctors seeking to find a way to stop the chronic all over body pain that resulted from I thought the second acute lumbar sacral strain. I had every kind of physical therapy, massage therapy, strength building therapy, myofascial release therapy, osteopathic manipulation to help keep my body from being a brick and to allow more range of motion, but in the end each and every doctor would tell me that s/he didn't understand why I still had so much pain. One doctor, the specialist it took me 8 months to get in to see, one day tried to chastise me for not taking responsibility for my own wellness. When I confronted him, he told me to my face that I must have misunderstood him. The next day I brought my husband to therapy with me and we both confronted him and he denied saying the things he said to me, speaking directly to my husband and ignoring me completely. People like me, with undiagnosed and untreated Lyme Disease that spans decades, end up being called hypochondriacs, malingerers, drug seekers, and many similar names, and these things are written in our charts so each successive doctor further discounts us too.
It is a living nightmare. Once and only once, when I finally realized that the doctors were not going to find the problems, fix them, and stop the pain, I got too close to the edge. It was during "vacation" when I spent the week between Christmas and the New Year in bed dealing with the pain, as I had only been allowed a maximum of two 4-6 hour pain pills for every 24 hours for 8 years. I realized during that week that I suffered from chronic pain and it seemed I was never going to get any effective treatment or medication to help relieve the pain. I became more and more withdrawn, and my husband had taken the week off too.
Finally, I admitted to my husband that I was having suicidal thoughts and he told me that he knew that because I had become so withdrawn. We talked about it and together we made a deal to find me effective help with the pain I had suffered so long, so I would not ever have to feel like the only way out was suicide again. In 1998 after first having to go to another state to get help with the pain I suffered, I picked a pain management clinic out of the Yellow Pages. I saw a doctor there in January and at the first appointment took all of my 8" thick file of medical records. At the first appointment the pain doctor asked me if I would mind being checked out for Lyme Disease, "to rule it out" in the chronic pain I had suffered almost a decade. I agreed, as I didn't want to leave any stone unturned, but I didn't know anything about Lyme Disease other than the vague notion that it was caused by ticks.
I was referred to another doctor, and in April 1998, was diagnosed as having late stage Lyme Disease with CNS involvement accounting for the very strange and scary things that had been happening to me since September 1997. I was on oral treatment for a long time as just plain Amoxil would cause horrific increase in the pain I lived with, and the fatigue I had became total exhaustion. I had been declining in mobility since 1990 after suffering the second acute lumbar sacral strain, due to the pain and fatigue, and plethora of other medical problems. Finally by May 1998 my body quit on me, and no matter how hard I tried, I could not make my body do what it could no longer do as the exhaustion was total, the pain overwhelming, and my ability to walk very far at all was severely limited. I ended up going out on temporary disability and then that became long term disability. I was forced to file for disability under the Social Security Act as it was implied that if I didn't the private long term disability carrier would cease making the payments that allowed me to keep my medical insurance. So I filed, and was so sick when turned down by the SSA, that I had to hire someone to handle the appeal for me, as I was unable to do so myself.
I had lived from 1990-1998 a prisoner in my own bedroom. Limiting myself to going to work, coming home, going to bed, with heated waterbed, electric blanket, and heating pads, to help deal with the pain I suffered since I could not get effective help or adequate pain relief even in a state with a pain law on the books. The pain law stated that I could be treated with opiate type medications to control pain where every other means of controlling the pain had failed. I did not have to live as I did for all those years, which contributed to the total physical collapse I suffered. I spent all weekend in bed too, so I would be able to work again the next week.  I could have stopped working, but that was not my work ethic, and never had been even recovering from a near fatal accident at age 19. It was the only way I knew to be able to deal with the pain and continue working so it's what I did, and all of my physicians before the new ones in 1998 knew that I used these methods of coping with the unrelieved chronic pain. Yet, even with a pain law they did nothing in 8 years to really help me with the pain except minimal amounts of pain medication so I apparently would not get addicted. In other words they knew nothing about chronic pain and how the pain itself eats up the opiate medication dulling the pain and how it's nearly impossible for chronic pain patients to become addicts. Yes, chronic pain patients can develop a tolerance to different pain medications just as people without pain can develop a tolerance to other medications, the difference being the class of the medication and the stigma attached to opiate medications.
Somehow, in this past year I slipped through the cracks and got approved for home infusion service with antibiotics. I had a number of weeks on I.V. Rocephin, and so many things began to change for the better that I was amazed.  I got to have a glimpse of how my life could be even after all these years with undiagnosed and untreated Lyme Disease, if only I could receive the infusion treatment long enough to effect remission. But that didn't happen, and the plethora of symptoms is either returning or worsening when they had gotten better, and I can no longer get any kind of approval for antibiotic infusions. At times I wish I'd never been given that glimpse of how my life could be again, because then I would not be so angry about being semi invalid, dependent upon my worn out spouse who is the care taker for both of us. We no longer have friends, they disappeared, even after 20 years of friendship, because people are funny and even if they know what you have isn't catching unless under rare circumstances, they don't want to be around people who are chronically ill. Not because we complain all the time, but because we're ill and cannot do all the things we once could do.
Even the CDC, Center For Disease Control, states that the true number of Lyme Disease patients shown by their figures is only a tip of the iceberg. So why don't they correct the way that they allow Lyme Disease to be determined, and honor what they say and not what they practice. Lyme Disease can and must remain a disease determined by clinical diagnosis and upheld by the CDC instead of the CDC allowing doctors and insurance companies to use the testing to support Lyme Disease (if possible due to the nature of the tests and the disease itself) as a way of refusing patients necessary medical treatment. We the patients are prevented by ERISA from doing anything except doing what we are, forming grass roots movements, working together to hopefully shame the powers that be into dealing with this disenfranchised segment of the population who have no where to go except to failing immune systems and opportunistic diseases. Perhaps that is what is wished by the powers that be after all. Why else would government agencies listen to the Steere "madness" and give it any credence at all?

Unfortunately, Lyme Disease, has now surpassed AIDS as the fasting growing infectious disease and children make up over 50% of the new cases confirmed each year. There are many more that are never confirmed until like me, the neurological manifestations of the disease become apparent to everyone around them. Too many are shunted off to nursing homes, victims of premature Alzheimer's disease, MS, Lupus, Parkinson's Disease, ALS or given diagnosis of Fibromyalgia Pain Syndrome which is now finally being paid attention to since Lyme Disease is the new waste basket disease and not Fibromyalgia. Far too many people have sought help in vain for 10-20-30 years not unlike myself, and to be given a diagnosis finally of Fibromyalgia, will not even listen to the fact that they may have an underlying undiagnosed disease causing the Fibromyalgia, which is true with me. Instead, they ignore the similarities, and being asked to at least "rule out Lyme Disease" and cling to their diagnosis like a frantic child to a favorite toy.

The mess the medical establishment and the government has made by considering the Steere sayings to be "the gospel according to Steere", have caused untold pain and suffering for people in this country and all over the world since other countries look to the United States for the latest in health care information and are ignoring their citizens just as U.S. citizens are being ignored to death, quite literally, because once the immune system wears out opportunistic disease will step in. Lyme Disease does not kill many outright, it kills over decades, first the soul then the body, but no one seems to care except for a handful of compassionate physicians who are so threatening to their peers that they are turned over for malpractice for daring to diagnose and treat Lyme Disease because no one else will. They are accused of endangerment because of the larger amounts, and longer doses of antibiotics necessary to effectively treat Lyme Disease. But, in the past 20 or more years, no one has come up with anything else, are we who have Lyme Disease supposed to wait to be treated until someone gets around to it in the next millennium?
If caught in the beginning, it takes very little to cure Lyme Disease, and it's not a big money maker at that point. Only when misdiagnosed as so many other diseases or syndromes does it become a moneymaker for doctors and pharmaceutical companies alike. Greed and avarice are the two biggest problems facing people with Lyme Disese. No one gets rich off of oral and sometimes limited antibiotic infusions for a disease that is easily cured if caught at onset. However, everyone gets to get a piece of the pie, when people with Lyme are diagnosed with other more exotic illnesses. The only one who really loses is the patient. You might argue that the government loses too, but that's not so. If our government can keep the lid on a second infectious disease that has no known cure once it is full blown, then they don't have to admit we have this terrible problem, work at informing the public, and end up paying tremendous amounts in disability benefits if people don't know that they have a progressive disease and struggle to keep on working until their bodies collapse or quit on them preventing them being able to work. It's kind of like cancer, little money to be made in curing cancer as opposed to treating it so long until remission or death. And, often it's true that people with Lyme Disease are not allowed to collect Social Security Disability Benefits, because now they're called Social Security Awards. Go figure. If people are not aware there is a name for the many symptoms they've had most of their lives and which finally forced them from the workplace, then there's no way they can file for and receive the SSA Awards is there?
I was told an interesting story that I believe to be true by a Lyme literate doctor. I was told that one of the main reasons my body did not respond to 8 years of treatments of all kinds was because it couldn't until the underlying disease was diagnosed and gotten under control. I was told by this same doctor that s/he believes all too often that other doctors are too quick to put a label on patients to get them over and  done with and on to the next patient, and will diagnose Fibromyalgia other syndromes or diseases without proper testing to rule out Lyme Disease. It's true, doctors do not want to diagnose and treat Lyme Disease as it reflects back badly on them and can and does effect the economy of the city or state they live in.
Cities and States found to be endemic for Lyme, lose valuable income from tourists and corporations alike.  Tourists will not want to visit Lyme endemic areas and corporations will not want to relocate to Lyme endemic states. Thus, each case of Lyme Disease reported to the CDC is a black mark against the doctors doing the reporting and sooner or later the state medical board or a peer will file malpractice charges against these compassionate doctors who will treat us even risking their ability to earn a living.
Finally, I cannot quit without sharing the blame for Lyme Disease as well as other infectious diseases being resistant to antibiotics.  Unless you've lived under a rock, anyone who is of Baby Boomer age, or follows after, has been fed a steady diet of antibiotics not from our doctors as media would have us believe, but from the cattle, poultry, swine, and dairy industries, who found out a long time ago that feeding antibiotics to their stock cut down on loss and increased profits. All of these industries share a blame, as does our government for allowing it to continue today!
The Lyme Disease patients and the compassionate doctors still willing to treat them with the higher and longer dose antibiotics are not to blame because this disease exists.  Ignorance and greed are to blame and smack in the middle is Alan Steere who is no friend to anyone with Lyme Disease.
These words are my own and may be reproduced in their entirety word for word, by anyone wishing to do so. I only ask that not one word be changed for any reason, my mistakes are my own.

Wishing us all health and freedom from pain, both physical and emotional.

Sandra Smith
(c) copyright Nov./99