tag:blogger.com,1999:blog-75067342432428248052023-11-15T22:46:40.930-08:00BbBostonSharing information about living with Borellia Burgdoferi (Bb, aka Lyme Disease) in Boston.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.comBlogger49125tag:blogger.com,1999:blog-7506734243242824805.post-13450116757771545942010-08-07T16:57:00.000-07:002010-08-10T17:36:34.667-07:00Who Knew? The Feds.We're battling from state to state to gain recognition for the epidemic which is Lyme, to protect doctors who want to treat patients with Lyme, to force insurance companies to cover said treatment and to push for more research for better testing and treatment options. State by state, inch by inch, taking years to get even one of those goals met in one state. Why does it take so long? One reason is that everybody claims there is no understanding for the need. We must prove our case each and every time anew.<br />
<br />
Yet, who did know that the "widespread misuse of the current Lyme disease surveillance case definition" was being "misused" to set a standard for care? Who did realize that for proper tracking, research and care we needed to "to include a broad range of scientific viewpoints"? Who has already understood that some patients "have encountered some difficulty when applying for assistance through SSA offices"?<br />
<br />
Well, the federal government did. Look at the text of this bill signed by President Bush in 2001:<br />
<br />
<blockquote><b><span style="color: #0000a0; font-family: Arial;">Public Law 107-116</span></b> <br />
<b><span style="color: #0000a0; font-family: Arial;">Departments of Labor, Health, and Human Services, and Education, and Related Agencies Appropriations Act 2002</span></b></blockquote><blockquote><b><span style="color: #0000a0; font-family: Arial;">Signed by President Bush 1/10/02<br />
</span></b> <br />
<div><b><span style="color: #0000a0; font-family: Arial;">(Passed by the Senate (11/06/01, 12/20/2001) and House (10/11/01, 12/19/01) and included as part of the final bill was signed into Public Law)</span></b></div><dl><dt><b><span style="color: #0000a0; font-family: Arial;">Centers for Disease Control and Prevention Lyme Disease</span></b> </dt>
<dt><b><span style="color: #0000a0; font-family: Arial;">The Committee is deeply concerned about the safety of the Lyme disease vaccine (LymeRix). Over 1,000 adverse event reports were filed with the Food and Drug Administration from December 1998 to October 2000. The Committee encourages CDC to work closely with the FDA to ensure that all adverse event reports are thoroughly and expeditiously investigated to ensure public safety as the vaccine is being distributed. Investigators should pay particular attention to patients' reports of arthritis when evaluating these reports.</span></b> </dt>
</dl><div><b><span style="color: #0000a0; font-family: Arial;">The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment. The vaccine clinical trial has documented that more that one third (36 percent) of the people with Lyme disease did not test positive on the most sophisticated tests available. The ramifications of this deficit in terms of unnecessary pain, suffering and cost is staggering. The Committee directs CDC to work closely with the Food and Drug Administration to develop an unequivocal test for Lyme disease.</span></b> </div></blockquote><blockquote><div><span style="color: #0000a0; font-family: Arial;"><b>The Committee is distressed in hearing of the</b> <b><span style="color: yellow;">widespread misuse of the current Lyme disease surveillance case definition.</span> While the CDC does state that `this surveillance case definition was developed for national reporting of Lyme disease: it is <span style="color: yellow;">NOT appropriate for clinical diagnosis,' the definition is reportedly misused as a standard of care for healthcare reimbursement, product (test) development, medical licensing hearings, and other legal cases.</span> <span style="color: yellow;">The CDC is encouraged to aggressively pursue and correct the misuse of this definition. This includes issuing an alert to the public and physicians, as well as actively issuing letters to places misusing this definition.</span></b></span> </div></blockquote><blockquote><div><b><span style="color: #0000a0; font-family: Arial;">The Committee recommends that the CDC strongly support the re-examination and broadening of the Lyme disease surveillance case definition by the Council of State and Territorial Epidemiologists. Voluntary and patient groups should have input into this process. Currently there is just one definition (`confirmed case') of seven possible categories. By developing other categories while leaving the current category intact, the true number of cases being diagnosed and treated will be more accurately counted, lending to improved public health planning for finding solutions to the infection.</span></b></div><div><b><span style="color: #0000a0; font-family: Arial;">The CDC is encouraged to include a broad range of scientific viewpoints in the process of planning and executing their efforts. This means including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates in planning committees, meetings, and outreach efforts</span></b></div><dl><dt><b><span style="color: #0000a0; font-family: Arial;">National Institutes of Health - Office of the Director Lyme Disease</span></b> </dt>
<dt><b><span style="color: #0000a0; font-family: Arial;">The Committee recommends that the NIH improve its communication across Institutes in order to better coordinate Lyme disease research and outreach to public and private scientists with the goal of stimulating research interest in this field. The Committee encourages the Office of the Director to involve NIAID, NHLBI, NINDS, NEI, NIMH, and NCCAM in promising areas of research. The Committee urges NIH officials to identify appropriate NIH advisory committees for Lyme disease representation and ensure the appointment of qualified persons. <span style="color: yellow;">The NIH is encouraged to include a broad range of scientific viewpoints</span> in the process of planning and executing these efforts, including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates.</span></b> </dt>
<dt><br />
</dt>
<dt><b><span style="color: #0000a0; font-family: Arial;">Social Security Administration<br />
The Committee understands that some <span style="color: yellow;">patients with Lyme disease and other tick-borne disorders have encountered some difficulty when applying for assistance through SSA offices</span>, due to SSA employees' unfamiliarity with these illnesses. SSA is encouraged to work on developing educational materials for SSA employees to facilitate a better understanding of the potential debilitating effects of these disorders. The Committee suggests that SSA collaborate with clinicians who have expertise on the multi-system chronic effects of Lyme, as well as patient and voluntary communities, to accomplish this goal."</span></b></dt>
</dl></blockquote> Thing is: it's 2010 and none of these issues have been addressed. That's nine years later. What happened?Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-49863512638488780972010-08-01T14:39:00.000-07:002010-08-01T14:39:09.542-07:00MA Protects Physicians Who Treat Lyme<div><div class="separator" style="clear: both; text-align: center;"><span style="color: black; font-family: Arial; font-size: x-small;"><span style="font-size: 10pt;"><span style="font-family: Times New Roman;"><a href="https://mail.google.com/mail/?ui=2&ik=de498b843e&view=att&th=12a2ec1275a3aa78&attid=0.0.1&disp=emb&zw" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="133" src="https://mail.google.com/mail/?ui=2&ik=de498b843e&view=att&th=12a2ec1275a3aa78&attid=0.0.1&disp=emb&zw" style="min-height: 200px; width: 320px;" vspace="5" width="200" /></a></span></span></span></div><blockquote><div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: center;"><span style="font-family: Arial; font-size: 8pt;">Massachusetts Lyme disease advocates pose with Governor Deval Patrick in his office following his signing of the FY2011 budget, which included legislation which will protect physicians who treat Lyme disease longer than 30 days. From left to right to right: Robin Lemieux of Groton; Susan Fairbank-Pitzer of Danvers; neurologist Luz Jacqueline Ruiz, M.D., of Harvard, MA; Donna Castle of Groton; Governor Duval Patrick; Representative Robert Hargraves (R-Groton); clinical psychologist Sheila Statlender, PhD, of Newton; and Jayme Kulesz of Groton.</span><span lang="0" style="color: blue; font-family: Arial; font-size: x-small;"><i><br />
</i></span><span style="font-size: 10pt;"><span style="font-family: Times New Roman;"><b><span style="font-weight: normal;"> </span></b></span></span></div></blockquote><div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: left;"><span style="color: black; font-family: Arial; font-size: x-small;"><span style="font-size: 10pt;"><b><span style="font-weight: normal;">Last Fall, I testified at the Massachusetts State House. I was there to support legislation which would protect physicians who treat patients with Lyme Disease. There has been a chill in doctor's offices across this state. It is a traumatic challenge when you are unlucky enough to end up with a case of Lyme which leads to persistent, debilitating health problems and discover that you can't find a doctor in your state who is willing to help you. They are unwilling to help either because they have been grossly misinformed or they are afraid of being punished by the state health board and shunned by their peers.</span></b></span></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: left;"></div><div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: left;"><span style="color: black; font-size: x-small;"><span style="font-size: 10pt;"><span style="font-family: Times New Roman;"><b><span style="font-weight: normal;">It was a long, uphill battle, but dedicated advocates trudged on year after year and we finally have a first step in the legal process which will potentially give patients a chance to find a treating physician. Here is the press release from the Lyme Disease Legislation Action Group: </span></b></span></span></span></div><div align="center" class="MsoNormal" style="margin: 0in 0in 0pt; text-align: center;"></div><blockquote><div align="center" class="MsoNormal" style="margin: 0in 0in 0pt; text-align: center;"><span style="font-family: Arial; font-size: x-small;"><span style="font-size: 10pt;"><b>For Immediate Release:</b></span></span><br />
<div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Times New Roman; font-size: x-small;"><span style="font-size: 10pt;">Jayme Kulesz , Lyme Disease Legislation Action Group </span></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Times New Roman;"><span style="font-size: 10pt;">978 448-2696 (h)</span></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Times New Roman;"><span style="font-size: 10pt;">978 273-0037 (c) </span></span></div><div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Times New Roman;"><span style="font-size: 10pt;"><a href="mailto:jkulesz@charter.net" target="_blank" title="mailto:jkulesz@charter.net">jkulesz@charter.net</a></span></span></div></div><br />
<div align="center" class="MsoNormal" style="margin: 0in 0in 0pt; text-align: center;"><span style="font-family: Times New Roman;"><span style="font-size: 10pt;"><b>Lyme Disease Legislation for Physician Protection signed by Governor Patrick</b></span></span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt;"><span style="font-family: Arial; font-size: 10pt;">Massachusetts Governor Deval Patrick signed Lyme disease legislation into law as <i>outside section 67</i> of the FY 2011 budget, effective July 1. "The intent of the law is to protect the freedom of Massachusetts doctors to treat Lyme disease comprehensively according to their best professional judgment, citing specifically the option for extended antibiotic treatment beyond 30 days," according to Brenda Boleyn, Chairperson of the Cape & Islands Lyme Disease Task Force, an advisory group appointed by the Barnstable County Commissioners. </span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-indent: 0.5in;"><span style="font-family: Arial; font-size: 10pt;">The legislation provides the definition for Lyme disease which includes, “the presence in a patient of signs and symptoms compatible with acute infection with <i>Borrelia burgdorferi</i>; or with late stage or persistent or chronic infection with <i>Borrelia burgdorferi</i>, or with complications related to such an infection.” In addition, the legislation provides for updating the Lyme disease definition if other strains are found to cause Lyme disease. </span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-indent: 0.5in;"><span style="font-family: Arial; font-size: 10pt;">The legislation also legitimizes and defines the “clinical diagnosis“ of Lyme disease. This may be based on knowledge obtained through medical history and physical examination only, or in conjunction with testing that provides supportive data for such clinical diagnosis, as determined by the treating physician. </span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-indent: 0.5in;"><span style="font-family: Arial; font-size: 10pt;">Governor Patrick’s signing of this important piece of legislation is the result of months of work by a core legislative action group, who worked with Representative Robert Hargraves (Groton-R) and Senate Majority Leader Fred Berry (Peabody-D) in drafting the bipartisan legislation and meeting with a number of state officials over the last year. “We are deeply grateful to Representative Hargraves and Senator Berry for taking time to meet with us and to understand the reasoning behind this law,” said clinical psychologist Sheila Statlender, Ph.D., a member of the legislative action group. </span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-indent: 0.5in;"><span style="font-family: Arial; font-size: 10pt;">“Representative Hargraves and Senator Berry led a large team of legislators that supported this law and spent countless hours working to insure it was headed to the Governor’s desk for signature,” added Statlender. “This is an initial step towards helping the many Massachusetts residents suffering from chronic Lyme disease, and perhaps will lead to their being treated in their own communities, instead of having to travel hundreds of miles out of state for treatment.” </span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-indent: 0.5in;"><span style="font-family: Arial; font-size: 10pt;">Representative Hargraves expressed gratitude for the outpouring of support from Lyme disease patients across the Commonwealth who sent letters to their legislators, the Governor and the Department of Public Health. “This groundswell of support from Lyme patients and their families was key to the signing of the legislation by Governor Patrick,” said Hargraves. </span></div><br />
<div class="MsoNormal" style="margin: 0in 0in 0pt; text-indent: 0.5in;"><span style="font-family: Arial; font-size: 10pt;">Following the signing of the legislation, Governor Patrick took the time to meet with members of the legislative action group and Representative Hargraves, and expressed his support. </span></div><div class="MsoNormal" style="margin: 0in 0in 0pt; text-indent: 0.5in;"><span style="font-family: Arial; font-size: 10pt;">Massachusetts joins Connecticut, Rhode Island and California as the fourth state in the country to sign legislation that protects physicians who treat Lyme disease long term. Language of the legislation is posted on the <span style="color: blue; font-family: Arial; font-size: 10pt;"><a href="http://www.mass.gov/bb/gaa/fy2011/os_11/h67.htm" target="_blank" title="http://www.mass.gov/bb/gaa/fy2011/os_11/h67.htm">Governor’s website. </a></span></span></div></div></blockquote></div><div class="MsoNormal" style="margin: 0in 0in 0pt; text-align: left;"><br />
<span style="color: black; font-family: Arial; font-size: x-small;"><span style="font-size: 10pt;"><span style="font-weight: normal;">I say "first step" because we all know that the real key to getting treatment is getting your health insurance to pay for it. Sick people, particularly when the illness is debilitating and you become unable to generate an income, can't afford to pay for the treatment on their own. We buy health insurance specifically for this reason. Even if we wanted to, the cost of some treatments is so exorbitant only the extremely wealthy could afford it. We need our insurance policy to actually insure that our health care needs are met.</span><br />
<br />
Still, your doctors have to be legally protected from sanctioning first, so this is a critical, foundational first step. We must acknowledge the accomplishment here and the significance. Its has required very arduous work and our community is both small and living with illness. So, this has been no small feat. We hope the world can understand that we might need to rest and rejuvenate before setting our sights on the next huge goal: requiring that insurance companies cover treatment ordered by a licensed physician.<br />
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That work will require going head to head with the gargantuan power of the insurance industry. Not something we look forward to. For now, we will celebrate this victory and envision doctors coming out of their offices and into their reception areas to welcome all the Lyme patients who need their care.</span></span><br />
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</div>Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com1tag:blogger.com,1999:blog-7506734243242824805.post-54850932620560047412010-07-26T08:33:00.000-07:002010-07-26T19:13:40.875-07:00Beast of BurdenI've been reflecting lately on the concept of people being a "burden to society." The topic is in the air with our economy in the tank and the political battles over extending funding for unemployment benefits. In modern U.S. politics, one of the defining differences between Republicans and Democrats is about whether to see those who can't provide for themselves as a burden to society or as vulnerable members who deserve our support, because "there, but for grace, go I."<br />
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Being a burden is not an abstract concept for anyone who lives with a chronic, debilitating illness. While the levels of financial, social and emotional support vary for each of us, I feel fairly confident in stating that almost every person living with illness has had to grapple, at some point, with feeling that she has become nothing but a burden.<br />
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Beyond the cultural messaging and the immediate context of illness, I was also put in the ring with this beast by my father. While some of the things I will describe are brutally blatant, I know that women, throughout history, have been handed this legacy. A legacy of having our very worth as a human being quantified by dowries and zeroed out if there is not a father or husband to claim us. Certainly, it is less so in our so-called feminist era, but the inherited psycho-social patterns aren't erased that quickly. We still see the messaging everywhere. This is a very known issue. It's Women Studies 101. I probably can't add anything to the body of work on the larger cultural phenomenon.<br />
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What I can speak to is the impact on a personal level, both as a woman and as a person living with chronic illness.<br />
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My father had a knack for rather crassly expressing that which is generally more subtly expressed in our society, particularly when it came to male/female relations. Sometimes I'm thankful for that. At least it's made very clear what you're up against. For example, he made it very clear that he considered children a financial burden which he looked forward to being released from. He often said to me when I was a child, "when you're 18, you're no longer my responsibility." He said it as though he was relishing the day. Though he had always told me to do well in school, because I could go to any college I got into, when the time came, he paid for only one year. I turned 18 during my freshman year. In the summer before my sophomore year he told me I had to pay for it myself from then on. Later, even when I asked him to co-sign a $17,000 student loan, which I was paying, he would tell me that I had owed him that money because it was on his credit report. Somehow, I owed both the lender and him.<br />
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I grew up with only sisters, no brothers. So, I have no way of knowing if the concept of "children as financial burden" would have applied to sons. There are hints, however. As I got good grades and was an accomplished athlete in school, my father would encourage me to do anything I could to ensure that I would be able to provide for myself as an adult. That's a fine principle, until his personal motivation for that is explained. The subject of being self-sustaining was always coupled with "because otherwise you'll be a burden to a man." As adults, my sisters and I learned that as long as we were self-sufficient or transferred our burdensome selves onto another man's accounts he loved us and was proud of us. If another man would take us on, he would even reward us with financial gifts. Really, he was rewarding the man.<br />
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Here's a stark example of how my father's accounting of his children played out. About 15 years ago, my youngest sister got married. She and her husband received from my father $20,000 for a downpayment for a house and he self-financed their mortgage at a very low interest rate. It was a lovely gift and not such an unusual thing for a financially well-off father to do for his child. On the face of it it sounds awesome, particularly as he publicly proclaimed that my other sister and I would receive the same gift if we got married.<br />
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However, its not that simple. My other sister was a single mother. She had gone on welfare to survive. She was struggling, but was going to college to finish a degree in the hopes of a better life. It was galling to think that he sat in that room, with all those guests, looking like such a loving and generous father when sitting right next to him was a child in need. This man who saw welfare as an unfair burden to "those of us who earn our way" and who lived a financially comfortable life, did not offer any financial support to his daughter in need, but offered support beyond expectation to the one who would have been fine without it. The gift wasn't for his daughter. It was for his new son-in-law, to lessen his burden. I'm happy for my sister and brother-in-law, what a wonderful gift to receive. The questions and emotional complexities come from something else: why does a daughter have to get married to receive the financial support for a home?<br />
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Fast forward two years later. I get engaged. Do I receive the wedding gift? No. Why? "Because I've gone through all my checkbooks and you've cost me more than any of my other daughters." (That would be that student loan and a legal bill he helped me with when I was younger.) I have been too much of a burden. I was no longer worthy.<br />
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Until five years ago, I knew that this concept of being a burden was in my psycho-emotional makeup, but I didn't really have to face it down. I was self-sufficient. In every relationship I was in, I made sure to be an equal financial partner. I earned my keep. I was smart and worked hard and was resourceful and felt confident that I would always be able to provide for myself. The beast was caged.<br />
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Until I got sick. It might have been easier if I'd gotten something really clear and obvious, too. If I'd had a physical accident, the moment of my disabling would have been stark. I would have qualified for the disability benefits I'd been contributing to during all my working years. If I had something like cancer, tests would have revealed a tumor or bad blood cells and the travails of treatment would be more familiar. Perhaps, just perhaps, if it were something like that, the normal social expectations for those conditions would have lessened how big the beast would be when he escaped the cage.<br />
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Instead, I got sick slowly and vaguely. I was so tired. I was achy. It came on gradually and not linearly. My knees and feet would hurt so much I couldn't walk. Later, it would be a gripping pain in my neck that would make me stop the car in tears unable to move. Was I forgetting things a lot? I had a young child and new business. Maybe it was just stress.<br />
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By the time I knew that something was really wrong, I was so far past the first stage of my illness that it took two years to get a diagnosis. Two years of sliding into further and further cognitive and physical disability. Why am I getting lost all the time? Where did those hours go? I never feel organized, I need a new system. I just did that yesterday? I can't see in the morning. My skin is burning from head to toe. Are you talking to me? Are those words? When did I say that? I did what?!<br />
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I crashed. The business crashed. My life crashed. Right into a jungle and there was a trail of debris. Like any jungle, the chronic illness jungle has a vast array of flora and fauna. When you're in it, it is a universe unto itself. It is dense and you can't even see that there is a world beyond its confines. There is the warming sunshine of friends, the nourishing fruit of caretakers, the gigantic insects of symptoms and the scary predators of your fears. When I crashed into my jungle, one of the predators was the Beast of Burden, released fully grown from its cage. <br />
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In five years, I don't think one single day has gone by in which I haven't worried about when and how I will generate an income again. When I eat, when I buy clothes, when I need or want anything at all, I am reminded that I am a burden. That I do not contribute. I feel guilty for having needs, much less desires. I berate myself for not having figured what I might do. I'm not reliably available cognitively. Some days I can barely walk from the pain. Others I'm too profoundly tired to move. One day per week is lost to a 6-hour medical infusion and the ensuing sleep. I have a daughter who needs what little energy I have. Who would hire me? I spend a lot of time trying to imagine what I might be able to do to earn a living.<br />
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There it is: "earn a living." Its built into our vocabulary. It is our vernacular perspective. One has to earn the right to live. So, what does that mean for those who, for whatever reason, cannot generate an income? What if you aren't earning your living? Are you no longer worthy? Are you simply a drain on society? A burden?<br />
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<br />
I struggle with these questions every day. While people might say, "you need to focus on healing", that's not really possible. A mortgage must be paid. Food must be purchased. Medical bills pile up. Its always the rainy season. The protective canopy wouldn't exist without it.<br />
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I've said this before and I'll say it again. I've been lucky. I separated from my husband in 2001. We have a daughter. So, when it was clear that I couldn't support myself, I accepted his generosity of letting me move back into our house and be financially supported. Neither of us had any idea, at the time, how long this would go on. I hadn't even gotten a diagnosis, yet. Four years later, we're still here. We both talk about finding a way to live in separate homes so we can get on with our lives. It is not fair to him to have been saddled with me, financially. He never, not once, has said anything to make me feel guilty about not contributing financially, though he is clearly stressed. We have come close to losing our house. Still, he will tell me that I need to focus on my health.<br />
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Yet, I can't. Every time I forget to do something. Every time I burn something in the oven. Every time I incur a medical cost not covered by insurance - even eyeglasses. Every time I need $5 for public transportation. Or I am gifted a book or a meal. Every single thing I do and don't do, I think about the costs and the increasing size of that beast. He's bigger than Sasquatch. The bigger he grows, the less worthy I feel. He looms there in the jungle, breaking twigs and rustling leaves so that I know he's there. His appetite his huge.<br />
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<br />
Maybe he'll eat the whole jungle one day.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-62871367823892092232010-07-05T10:46:00.000-07:002010-07-05T10:46:43.467-07:00Lyme is a 4-Letter WordI had in interesting encounter last night. I was at a friend's house for a BBQ. Her father was visiting from out of town. He's a doctor from New York. A hematologist.<br />
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In a rambling discussion of topics ranging from family backgrounds to the study of languages, I mentioned being at NYU and having a professor who spoke English with such a heavy Chinese accent that I couldn't understand a word he said. My friend's father had gone to NYU. He got both his undergrad degree and his medical degree there. He lives and practices north of New York City now, so I asked him if he still had connections to the NYU Medical Center.<br />
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I told him that I had been to a neurologist connected to NYU last year. This piqued his curiosity and we talked about the tests I'd had done there. I explained that I'd had nerve biopsies that confirmed abnormal morphology and nerve conduction exams that confirmed conduction issues. I told him that two neurologist had determined based on these tests that I have Chronic Inflammatory Demyelinating Polyneuropathy and Dysautonomia.<br />
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He started questioning: "Well, was there an MRI?", "Was the nerve biopsy definitive?", "Were there any other tests to confirm this? "What kind of tests have you had?" He was skeptical of the diagnoses. A hematologist is questioning the neurological diagnoses of two neurologists.<br />
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What struck me right off the bat, was how little he knew of me and my history and how willing he was to jab at the work of other doctors. I was not seeking his medical advice. I was relating a positive encounter with an NYU doctor.<br />
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When I explained to him that I had been displaying neurological symptoms to doctors since 2005 and that these tests were definitive and the only other tests I'd ever had that came up with definitive positives were Lyme tests, he stiffened right up and said, "So, you had Lyme once, doesn't mean its active."<br />
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Wow. I hadn't said that it was. In fact, I was explaining that since there seems to be no consensus on what all the Lyme tests mean, we were actively pursuing other explanations for my symptoms. I did inform him that I'd had a recent test that supposedly did confirm active infection, but that I wasn't left with any sense of confidence about that, either, given so much conflicting documentation.<br />
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His retort - and I say retort, because at this point, he clearly seemed to have stepped into conflict mode, when we had been simply discussing my experience with a doctor from NYU as a matter of people making connections - "There is no controversy about Lyme tests, the IDSA is just having to stand up to a lot of quacks."<br />
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Conversation over. He barely spoke to me the rest of the evening, after having been energetically engaged up to that point.<br />
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Lyme is a four-letter word. Those of us who have had to live with Lyme, know it as a kind of curse, certainly. Apparently, the mere utterance of the word is a curse, an offense. It certainly has power.<br />
<br />
I was not trying to discuss Lyme. Nor was I at all interested in going through the history of my medical journey, since it doesn't reflect well on the profession and I had no need to cast any shadow on this man I did not know. In fact, I was relating one of my better experiences of a doctor as a way of praising NYU. Further, I was purposefully highlighting the concept that my neurological symptoms could be explained with diagnoses other than Lyme. I even avoided mentioning that the docs think having Lyme generated these disorders. Still, in response to his questioning about whether I'd ever had any definitive tests, I mentioned Lyme, just mentioned it and the conversation derailed. His entire demeanor changed.<br />
<br />
Here we can see how progress on this topic is impossible. By generically labeling those who oppose the IDSA stance as quacks, he has summarily dismissed any consideration of their viewpoints. It doesn't matter that the IDSA admits that their guidelines are based on opinions, not evidence. It doesn't matter that there is a growing body of research which contradicts the IDSA opinions. If a proof-positive piece of research came from someone who contradicts the IDSA, it would not be given a chance at daylight, because they are "quacks".<br />
<br />
This is how you stifle dissent. You make it clear that you are willing to be personally offensive to anyone who disagrees, rather than simply hearing someone out and pointing out any flaws in their ideas. In short, you are a bully. I certainly wasn't going to provoke a debate about this as a guest at someone else's house. I'm not well-enough equipped to have the debate with an entrenched doctor, anyway. <br />
<br />
While someone with this style may think he has won something, what he lost was my respect. Additionally, he left the scent of fear. The establishment is feeling threatened. That may be a good thing. As long as, the threat is out of a search for truth and not based in fear, itself.<br />
<br />
I'll write about the fears that surround Lyme tomorrow.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com2tag:blogger.com,1999:blog-7506734243242824805.post-54847903427495416612010-06-25T10:20:00.000-07:002010-06-25T10:21:16.860-07:00Bacterial Disease, Not A CrayonThis does not cause Lyme Disease:<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://bioweb.uwlax.edu/bio203/s2008/clarin_bria/Images/deer-tick.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="314" src="http://bioweb.uwlax.edu/bio203/s2008/clarin_bria/Images/deer-tick.jpg" width="320" /></a></div>Lyme is not a big bug that you can see.<br />
<br />
That tick is one delivery agent of this: <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://cellbiology.med.unsw.edu.au/units/images/lyme.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="246" src="http://cellbiology.med.unsw.edu.au/units/images/lyme.jpg" width="320" /></a></div><br />
It is a spirochetal bacterium called Borrelia Burgdorferi. It can only be seen under a microscope. It invades tissues throughout the body.<br />
<br />
I wish we would stop using the tick image as almost the logo or branding for Lyme Disease. Certainly, knowing about ticks is key to prevention. But it is not the tick which we fight when we fight for our lives. It is a bacteria. A very serious bacterial disease. I think people lose sight of that when we associate so much of the discussion of Lyme with the images of ticks.<br />
<br />
I'm also a little dismayed by the trend of late to associate diseases with cute colors. I know it seems natural since this disease was originally identified in Lyme, CT to use the lime color for PR and awareness. But there's is something about the whole idea of this which diminishes the gravity of it all. Besides, if I had to pick a color for having lived with the ramifications of this disease, it would be grey. My life has gone grey. Not even the sharpness of black. A dull, neutral grey. A grey fog of cognitive issues, physical pains and the mystifying world of our broken medical system. I lie in wait to get my life back. That said, even grey is still associating a disease which can imperil your life with a crayon. Somehow, I don't think we're going to get the world to pay attention to how serious this is by being so cutesy.<br />
<br />
I have seizures. Sometimes I can't see. Some days my fingers don't work or I can't walk. I am being driven insane by the sounds of the everyday world due to hyperacusis. I don't want people thinking about the cheery lime green color and feeling that you can deal with Lyme Disease by swiping ticks away.<br />
<br />
I want people to realize that we need research. Lots of it. I want people to see the <a href="http://www.lymedisease.org/news/lymepolicywonk/443.html">admitted opinions - not evidence-based science</a> - of the conflict-ridden IDSA are being used as de facto law in such a way that thousands of people are suffering due to their self-interests. So, can we stop using a crayola color and macro-sized bug to represent this disease. How about a microscopic image or a photo of someone with Lyme Palsy? How about videos of shaking patients or people struggling to walk? Or interviews with folks who can't remember their names or how to get home from next door?<br />
<br />
Its not a pretty scene, living with Lyme. Its not a cheery green color. Its not cute. Lets start making that clear, shall we?<br />
<br />
Just my little rant for the day. Thanks for indulging.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com1tag:blogger.com,1999:blog-7506734243242824805.post-79920494458644766572010-06-10T12:47:00.000-07:002010-06-10T12:47:00.065-07:00Action Alert: Protect MA Physicians!<div style="color: #e06666;">Please forward to everyone you know! While this action is needed from MA residents, supporters outside the state are urged to contact anyone they may know in MA to encourage their participation. Many thanks!</div><br />
ACTION ALERT re: MASS. PHYSICIAN PROTECTION LEGISLATION<br />
<br />
In Brief (detailed explanation available in next post):<br />
<br />
The time has now come to contact Governor Deval Patrick! Language to protect physicians* who treat Lyme disease has been included in an outside section of the FY11 Budget.** Help us make the Governor aware of our (or a friend or family member’s) difficulties in finding appropriate treatment for Lyme disease in Massachusetts and our need for this legislation!<br />
<br />
<ol><li>We must ALL urge Governor Patrick to sign the Budget, with this section intact. The IDSA has opposed this legislation at every turn and <b>we fully expect that they will pressure Governor Patrick to veto this section</b> of the Budget Bill. We have already been told that the Legislature will not have enough votes to overturn such a veto. Please send letters, fax, call or email Gov. Patrick (contact info below, including a sample and some tips for your letter) to let him know how important this is to <b>so many</b> of his constituents. Politicians DO take notice when they receive many letters and calls on the same topic – so help us get his attention!<br />
<br />
Governor Deval Patrick <br />
Massachusetts State House <br />
Office of the Governor <br />
Room 280 Boston, MA 02133 <br />
Phone: 617.725.4005 <br />
888.870.7770 (in state) <br />
Fax: 617.727.9725 <br />
TTY: 617.727.3666 <br />
<br />
Or use this link to <a href="http://www.mass.gov/?pageID=gov3utilities&sid=Agov3&U=Agov3_contact_us">email Gov. Patrick</a>.<br />
</li>
<li>We have also been encouraged to contact the Commissioner of the Department of Public Health, John Auerbach (contact info below), as Governor Patrick is likely to seek his opinion on the matter. If you send a letter or fax to Gov. Patrick, you can just send a copy to Commissioner Auerbach as well. We need Commissioner Auerbach on our side.<br />
<br />
Commissioner John Auerbach<br />
Massachusetts Dept. of Public Health<br />
250 Washington Street<br />
Boston, MA 02108<br />
Telephone: (617) 624-6000<br />
TTY/TDD (617) 624-6001<br />
<br />
Or use this link to <a href="http://www.mass.gov/?pageID=eohhs2terminal&L=4&L0=Home&L1=Government&L2=Departments+and+Divisions&L3=Department+of+Public+Health&sid=Eeohhs2&b=terminalcontent&f=dph_g_feedback_form&csid=Eeohhs2">email Commissioner Auerbach</a>. <br />
</li>
<li>It would also be helpful to send a copy of your letter to your own State Senator and State Representative (find yours at: http://www.mass.gov/legis/ ), so that they also are aware of the large number of us that want and need this legislation to pass. It is an election year, after all – and they can also urge the Governor to sign.<br />
</li>
<li>Trouble emailing or using the online form?<br />
Simply email a copy to <a href="mailto:lymebill@gmail.com">lymebill@gmail.com</a> <br />
<br />
We will print and submit a hard copy of your letter to both the Governor and Commissioner Auerbach. Again, you can send your letter to: <a href="mailto:lymebill@gmail.com">lymebill@gmail.com</a></li>
</ol><b><br />
</b><br />
<b>TIPS FOR YOUR LETTER TO THE GOVERNOR</b>:<br />
a) Please personalize your letter -- don’t just copy the sample and send it, if at all possible! Form letters are not taken as seriously as a personal letter. However, a form letter MUCH better than nothing, if that’s all you can manage right now.<br />
<br />
b) Keep your letter brief and to the point—no more than one page! As much as we’d like them to, they won’t read all the way through our long, very sad and usually infuriating stories. <br />
<br />
c) If you are writing about yourself, and particularly if you are writing about a child under 18, please consider the fact that this is <b>not</b> private correspondence. You do not need to mention your child’s name, your doctor’s name, or any specifics about your treatment.<br />
<br />
d) Be sure to include your full name and address.<br />
<br />
e) Good points to mention:<br />
<ul><li>If you (or a family member or friend) were unable to find a doctor in Massachusetts to diagnose or treat you appropriately for Lyme disease – and especially if any Massachusetts doctor indicated that they couldn’t or wouldn’t diagnose or treat you for Lyme disease because they were afraid of the consequences, or because they needed to follow the IDSA guidelines. Please don’t mention names.<br />
</li>
<li>If you went to a physician out of state because of this.<br />
</li>
<li>If long-term antibiotics helped you.<br />
</li>
<li>If the delay in treatment caused additional health problems.<br />
</li>
<li>It’s also good to mention the financial toll this has taken on you and your family overall.<br />
</li>
<li>Your desire to be able to choose a treatment which is alternative to those prescribed in the IDSA guidelines.</li>
</ul><br />
<b>SAMPLE LETTER TO GOVERNOR</b>:<br />
<br />
The Honorable Deval Patrick<br />
Governor of Massachusetts<br />
Massachusetts State House<br />
Room 280<br />
Boston, MA 02133<br />
<br />
RE: Outside section of the Conference Committee Report of the FY11 Budget pertaining to long-term treatment of Lyme disease<br />
<br />
Dear Governor Patrick:<br />
<br />
I want to urge you to sign the FY11 Budget with the section pertaining to long-term treatment of Lyme disease intact. This is extremely important legislation for my family and our state.<br />
<br />
(INSERT YOUR SHORT STORY HERE)<br />
<br />
This Legislation will allow physicians to clinically diagnose a patient with Lyme disease and will enable very ill MA residents to choose treatment options that best meet their needs, while the medical community works to find better consensus on LD treatment guidelines. Please sign it into law and allow the citizens of Massachusetts a choice in the treatment of Lyme disease.<br />
<br />
Sincerely,<br />
Jane Doe<br />
435 Maple Street<br />
Anytown, MA 00022<br />
<br />
If you would like a Microsoft Word template for this letter to be emailed to you, send an email to <a href="mailto:lymebill@gmail.com">lymebill@gmail.com</a> with the word ‘TEMPLATE’ in the subject field.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-7253716107905807652010-05-21T11:52:00.000-07:002010-05-21T13:18:12.952-07:00My Diagnosis StoryOne of my DailyKos <a href="http://www.dailykos.com/user/LymeDiseaseAwareness">Lyme Disease Awareness</a> cohorts had the wonderful idea to seek out and publish the stories of how DailyKos members were <a href="http://www.dailykos.com/storyonly/2010/5/18/866072/-Updated:-11-Kossacks-Tell-Their-Lyme-Diagnosis-Stories-">diagnosed with Lyme Disease</a>. Of course, I was to be included. When she asked me, I thought, "Oh that's easy. I must have written that up on my blog. I can just give a copy of that." Only, I hadn't. So, as part of the personal context to my writings here, I will paste what I submitted:<br />
<div><br />
</div><blockquote><span class="Apple-style-span" style="color: #222222; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 12px; line-height: 16px;"></span><br />
<span class="Apple-style-span" style="color: #222222; font-family: Verdana, Geneva, Arial, Helvetica, sans-serif; font-size: 12px; line-height: 16px;"><div style="line-height: 1.5em; margin-bottom: 0.67em; margin-left: 0px; margin-right: 0px; margin-top: 0.64em;">I had been tired alot, but I thought that was to be expected, as a business owner and mother of a young child. However, by the summer of 2005, I knew something was wrong. I had purposefully structured my schedule to make sure I was getting rest for the past 6 months and still, I was profoundly tired. Moreover, I was waking to powerful burning/tingling feelings in my hands and feet and lips. My early thoughts were that I had been poisoned, as I had had similar feelings with MSG poisoning years ago. I was also experiencing cognitive changes. Where I had always been a compulsively organized person, I couldn't keep an organizational system going and my "to-do" list was falling apart. I was forgetting very important things and losing things all the time. Me. The person who had the same pair of sunglasses for 12 years. I think I'd had my keychain for about 20. Those were gone. And my constantly organized house was a mess.</div><div style="line-height: 1.5em; margin-bottom: 0.67em; margin-left: 0px; margin-right: 0px; margin-top: 0.64em;">I became very concerned when I started having so much pain in my feet and knees and hips that I couldn't walk. When I woke up one morning unable to see - it was as if I were looking at the world through a wall of rushing water - for a couple of hours, I knew it was time to do something. Not inclined to go to the doctor (hadn't seen one in 15 years), I went to my acupuncturist. After a couple of visits, he gave me a clear directive, "you have Lyme disease. Go to a doctor and get antibiotics." My acupuncturist who loathes antibiotics was telling me to go get them. We'd known each other for about 12 years, so I took him seriously. In August of 2005, I had an appointment at a local clinic. Here's what ensued:</div><blockquote style="background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-color: rgb(255, 204, 0); border-bottom-style: dotted; border-bottom-width: 1px; border-left-color: rgb(255, 204, 0); border-left-style: dotted; border-left-width: 1px; border-right-color: rgb(255, 204, 0); border-right-style: dotted; border-right-width: 1px; border-top-color: rgb(255, 204, 0); border-top-style: dotted; border-top-width: 1px; color: #222222; margin-bottom: 10px; margin-left: 25px; margin-right: 25px; margin-top: 10px; padding-bottom: 10px; padding-left: 20px; padding-right: 20px; padding-top: 10px;"><div style="line-height: 1.5em; margin-bottom: 0.67em; margin-left: 0px; margin-right: 0px; margin-top: 0.64em;">* Tested negative for Lyme in August 2005<br />
* Was sent to a neurologist in Feb 2006, hospitalized, then told it was just stress<br />
* Went to a recommended doctor in Spring '06, who diagnosed me with "chronic heavy metal poisoning"<br />
* after 9 months of chelation, was getting worse - more debilitating pain and weird cognitive episodes of profound confusion doing common activities, getting lost in my own neighborhood, unable to recognize friends<br />
* Spring of '07 was told by PCP that I was a psychiatric case<br />
* Summer of '07, was informed by acupuncturist of 55% inaccuracy of Lyme test<br />
* Aug '07, paid $1,000 out of pocket for more tests, which came back definitively positive for Lyme<br />
* Tried oral antibiotics for 6 months, but couldn't tolerate them.<br />
* Moved to bicillin injections in May '08. Saw some improvement<br />
* Was retroactively denied the bicillin by my insurance company in July '09</div></blockquote><div style="line-height: 1.5em; margin-bottom: 0.67em; margin-left: 0px; margin-right: 0px; margin-top: 0.64em;">In April of 2009 I tested positive for two auto-immune disorders - Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Dysautonomia, which explained why I wasn't responding well enough to the antibiotics (tests I would not have gotten if it weren't for ellinorianne and the amazing community of dKos). I needed a much more serious treatment to get my immune system functioning, something called intravenous immunoglobulin (IvIg). IvIg costs anywhere from $4,000 to $17,000 per treatment. I needed to have it 4 times a month for at least 9 months and possibly years. This wasn't going to happen unless insurance covered it. Insurance wouldn't cover it unless I found an in-network neurologist to confirm the diagnosis and issue the orders. Given that the etiology of my diagnoses was Lyme, that proved challenging. Doctors in Massachusetts run screaming from Lyme patients. It is a particularly hostile state to docs who try to treat Lyme patients with anything more than 4 weeks of antibiotics. Though CIDP can be a stand alone diagnosis and the well-established treatment is IvIg, every doctor wanted to see my entire history and couldn't look past the Lyme Disease implications. Finally, I found one who would see me, only she had her own health problems. I was scheduled to see her in September of 09, but that was delayed until February of 2010.</div><div style="line-height: 1.5em; margin-bottom: 0.67em; margin-left: 0px; margin-right: 0px; margin-top: 0.64em;">Since then, a change from HMO to PPO has meant that my out-of-network neurologist is now recognized by the insurance company. I have had 4 treatments of IvIg so far. The first real ray of hope in 4.5 years. And, I'm a lucky one.</div></span></blockquote>Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-39983888660191111902010-05-13T11:33:00.000-07:002010-05-13T20:32:29.605-07:00Been Bitten by a Tick? Prevent Lyme!cross-post from <a href="http://www.dailykos.com/storyonly/2010/5/13/866092/-If-Youre-Bitten-By-a-TickPrevent-Lyme-Disease">DailyKos</a>:<br />
<br />
We've <a href="http://www.dailykos.com/storyonly/2010/5/4/863249/-Lyme-Disease-Awareness:-Prevention" target="_blank">discussed</a> how to best avoid tick bites and today we'll discuss what to do if you been bitten by a tick.<br />
<br />
How do you know if you've been bitten by tick? The most obvious case is that you've found a tick attached to you or someone you know. It is most often cited that the tick must be attached 36 hours for transmission of Lyme to occur, but it is <a href="http://asp.cumc.columbia.edu/lymedisease/askthedr/for_pt/displayanswer1-lyme.asp?Departments=LymeDisease&Controlnumber=2861" target="_blank">possible for transmission to occur more rapidly</a>. The first thing you need to do is remove the tick. This has to be done properly, to ensure that you really do remove the entire tick. Luckily, we have Dr. Oz to demonstrate the proper method:<br />
<br />
<img border="0" height="0" src="http://counters.gigya.com/wildfire/IMP/CXNID=2000002.0NXC/bT*xJmx*PTEyNzM3NjE5MzM1OTMmcHQ9MTI3Mzc2MTk*NDM5MCZwPTcxNDQ4MSZkPSZnPTEmbz*zODFmMzU1NjE3ZGI*ZWMxYTFj/MTA1YjlhN2NjOWY1ZiZvZj*w.gif" style="height: 0px; visibility: hidden; width: 0px;" width="0" /> <br />
<a class="active" href="http://www.doctoroz.com/videos/avoid-bite-lyme-disease" target="_blank"><img alt="" class="imagecache imagecache-300x200" height="200" src="http://www.doctoroz.com/sites/default/files/imagecache/300x200/media/image_thumb/1_151_03_LymeDiseaseSTILL.jpg" title="" width="300" /></a><br />
<div><br />
</div> <br />
Another possibility is that you see a bite, but the tick is no longer attached. How do you know if it's a tick bite? A few things to look for:<br />
<ol><li value="1"> Is it a single bite or a series of bites? With ticks, there is usually just a single bite.</li>
</ol><ol><li value="2"> Did you think, "this might be a spider bite?" This is one of the most common mistakes. If you think its a spider bite, reconsider.</li>
</ol><ol><li value="2"> Is there a rash? Not a welt - where the skin is raised but not red, a rash where the skin is red. A few things about the Lyme rash from the <a href="http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html" target="_blank">Columbia Lyme and Tick-Borne Disease Research Center</a>:</li>
</ol><blockquote>This rash is most often circular with a clear edge, but oblong and other shaped rashes may occur as well in response to the tick bite. This rash is known as erythema migrans or EM. This rash usually starts about 3-30 days after the tick bite. Sometimes this rash is mistaken as a "spider bite". It is called "migrans" because it grows in size, gradually expanding over several days to greater than 2 inches across; some rashes can cover very large areas, such as an entire back. If the center of the rash clears, the rash may take on a bull's-eye appearance. The rash is usually not itchy or painful. Sometimes, other rashes occur in other parts of the body far away from the initial tick bite. This is because the spirochete gets transmitted quite rapidly in the bloodstream after the initial tick bite. Wherever the blood goes, there too will the Borrelia spirochete travel. </blockquote>There are some strong myths about the rash associated with Lyme, so I'm going to reiterate a few of the points made here:<br />
<ol><li value="1"> The rash may not be circular</li>
</ol><ol><li value="2"> You can get the rash in more than one location, even with one bite</li>
</ol><ol><li value="3"> The rash is not itchy or painful.</li>
</ol><ol><li value="4"> The rash can appear several days after the initial bite.</li>
</ol>One of the biggest myths about Lyme is that you have to have had this rash to have a case of Lyme Disease. If you read further up in the page from Columbia, they say this: <br />
<blockquote>In about 60-70% of cases, a rash may develop at the site of the tick bite. </blockquote>That is, 30%-40% of patients do NOT get the rash.<br />
<br />
So, the rash is a fairly definitive sign, but never think you're out of the woods just because you don't see the rash.<br />
<br />
A simple tick bite might look like this: <br />
<img alt="Simple tick bite" src="http://i43.photobucket.com/albums/e365/CirclesKnitting/Lyme/SimpleTickBite.jpg" title="Simple tick bite" /><br />
<br />
A bite with a "bull's eye" rash might look like this: <br />
<img alt="Tick bite with bull's eye rash" src="http://i43.photobucket.com/albums/e365/CirclesKnitting/Lyme/BullsEyeRash.jpg" title="Tick bite with bull's eye
rash" /><br />
<br />
Another type of tick bite rash might look like this: <br />
<img alt="Tick bite with multiple rashes" src="http://i43.photobucket.com/albums/e365/CirclesKnitting/Lyme/TickBiteRashMulti.jpg" title="Tick bite with multiple
rashes" /><br />
<br />
Sometimes it can even look like a bruise: <br />
<img alt="Tick bite that looks like a bruise" src="http://i43.photobucket.com/albums/e365/CirclesKnitting/Lyme/TickBiteBruise.jpg" title="Tick bite that looks
like a bruise" /><br />
<br />
You can see, there is a wide variety of tick bite expressions. So, if you've been outside near any tall grasses, wood piles, or trees - it doesn't take much, as the ticks we most commonly acquire are carried by birds and mice and other small animals - and you see a bite which looks like any of these, you should be considering the possibility of a tick.<br />
<br />
To be clear: Lyme Disease is now reported in all 50 states. You do not have to be in the countryside to be at risk. I acquired Lyme Disease inside Boston. Mostly likely at a nearby park, but could have been in my backyard. I know children in the neighborhood are getting it without leaving their yard.<br />
<br />
Ok. You think its a tick bite. What now?<br />
<br />
Go. To. A. Doctor.<br />
<br />
Here's where it can get a bit tricky. Doctors are not necessarily well-educated about Lyme. In fact, there is lots of mis-education going on. So, you may have to insist on what you need. Frankly, you may have to go in <a href="http://www.ilads.org/lyme_disease/Primary_care_brochure_08_08.pdf" target="_blank">armed with information</a> (pdf) and you will need to have formed your own opinion about what to do. Why? Because the range of advice you can get from a doctors office is from: "don't worry about it" to "don't do anything unless we get a positive ELISA test result" to "take 1 dose of doxycycline and you'll be fine" to "its best to take a prophylactic course of 30 days of antibiotics and to continue testing."<br />
<br />
### Opinion Alert ### <br />
Here's where we move from me simply sharing info to me citing my own opinions based on my own experiences. Please read this with that in mind and the understanding that I am not a doctor and have never played one on television. I did play doctor as a child, but I'm sure that doesn't give me any credentials, either. ;-) I simply have had to face all of this for a long time and have become as well-educated as I can.<br />
<br />
How do you decide what's right for you? I don't know. I can tell you how I came to my conclusions and, perhaps, others will tell you why they have their opinion on the matter. I have a long post on my <a href="http://bostonlyme.blogspot.com/2009/07/its-imperative-to-treat-immediately.html" target="_blank">BostonLyme blog</a> about this, which I'll just summarize here with few links for your perusal:<br />
First and foremost, in my mind, is that you need to do everything you can to avoid the very devastating possibility of acquiring <a href="http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html" target="_blank">"late disseminated" or "neurologic"</a> Lyme. Just read the description, noting that "this can occur in a matter of days": <br />
<blockquote>If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2nd or 3rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain). The typical constellation of symptoms associated with disseminated Lyme disease may include severe fatigue with a need for naps during the day, low grade fevers, muscle and joint pains, sleep disturbance, irritability, headaches, light or sound sensitivity, sharp stabbing or shooting pains, and/or numbness and tingling. </blockquote>For me, the risks of Lyme far outweigh the risks of 4 weeks of antibiotics.<br />
Because this thing can disseminate so quickly, it doesn't make sense to me to wait for test results. Here, I'll quote from my blog about the problem with waiting for tests: <br />
<blockquote>The initial screening test for Lyme, used quite universally, is called the ELISA. The ELISA is known to be inaccurate up to 55% of the time.(1) That is, it only correctly determines whether Lyme antibodies are present 45% of the time. At least 35% of the patients told that they do not have Lyme Disease because their ELISA test came back negative, actually do have Lyme Disease. This is called a false negative. That is to say, that the ELISA will miss over 1/3 of the cases.<br />
Additionally, our bodies do not produce enough antibodies to register on an ELISA screen for up to eight weeks after the onset of infection. So, to be sure that you have the best chance of an accurate test you must wait 8 weeks. </blockquote>Do you want to rely on a test which is 55% inaccurate? Do you want to wait 8 weeks, given how quickly this disease can spread to something much more difficult to treat?<br />
<br />
There is a lot more to say on the topics of testing, mis-education and the challenges for patients when they have to determine for themselves who to trust on such an technical matter. Lyme Disease is a complex topic in and of itself because there are different strains. It is further complicated by the prevalence of co-infections. Those docs that point to research citing that Lyme is cured in 4 weeks, are pointing to very flawed studies that do not include patients with delayed diagnosis or co-infections, for instance. The studies don't do long-term follow-up of the patients. Nor do they look at multiple medicines or the more than 100 strains of borrelia. The picture of what research has and hasn't been done gets muddied by the fact that medicine is a for-profit industry.<br />
<br />
I wish it were more straightforward. For me, the bottom line is that acquiring Lyme is not worth any risk. Whenever I know of anyone who has been bitten I arm them with information and tell them this: <br />
<ol><li value="1"> Demand 4 weeks of antibiotics as a prophylactic</li>
</ol><ol><li value="2"> Demand that you get both the ELISA and the Western Blot test</li>
</ol><ol><li value="3"> Demand detailed results of the tests, not just the lab's overall assessment</li>
</ol><ol><li value="4"> If you are still symptomatic after 4 weeks of antibiotics, demand more treatment.</li>
</ol><ol><li value="5"> If your doctor doesn't respect your input, find one that will.</li>
</ol>Here are some links I offer up for more information: <br />
<a href="http://www.ilads.org/lyme_disease/about_lyme.html" target="_blank"> International Lyme and Associated Diseases Society</a> <br />
<a href="http://www.lymedisease.org/lyme101/ticks/about_ticks.html" target="_blank">California Lyme Disease Association</a> <br />
<a href="http://www.lymeneuroborreliosisprogram.org/index.html" target="_blank">Lyme Neuroborreliosis Research Program</a> <br />
"<a href="http://www.presspubs.com/articles/2010/05/11/columns/doc4be9b94bb8d6d984575095.txt" target="_blank">Learn the Truth About Lyme</a>" <br />
<a href="http://ilads.org/lyme_disease/written_testimony/5%20Maloney-Prophylaxis.pdf" target="_blank">PDF of letter challenging common prophylactic recommendations</a><br />
<a href="http://www.lymedisease.org/news/files.php?file=Volkman_address_removed_Text_3_09_115176301.pdf" target="_blank">Volkman Letter</a> about evidence of persistence, unreliability of testing, blocking of good research and much more... (pdf) <br />
<br />
(1) Bakken LL, Callister SM, Wand PJ, Schell RF. Interlaboratory comparison of test results for detection of Lyme disease by 516 participants in the Wisconsin State laboratory of hygiene/College of American Pathologists proficiency testing program. J Clin Microbiol 1997; 35: 537-543.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com2tag:blogger.com,1999:blog-7506734243242824805.post-21392698984536898682010-05-06T10:26:00.000-07:002010-05-06T10:30:51.423-07:00#IDSAFailThat's a "hashtag" on Twitter now. I don't know if it was used before, but I saw it fly into action last week after the IDSA (Infectious Disease Society of America) made this <a href="http://www.idsociety.org/Content.aspx?id=16499">announcement</a>:<br />
<blockquote>After nearly two years, a special independent Review Panel has agreed that no changes need be made to IDSA’s 2006 Lyme disease guidelines at this time.</blockquote><br />
I'm slow getting to this due to momentous things happening for me, right now, however I can't let it pass.<br />
<br />
I'd like to say I was shocked, but I wasn't. <br />
<br />
I wasn't shocked because, from the beginning of their <a href="http://www.ct.gov/AG/cwp/view.asp?a=2795&q=414284">antitrust settlement </a>(link to PDF of the agreement is near the bottom of the page) with the CT Attorney General, they made it clear that they weren't taking the need to reconsider their position seriously. Though the Attorney General said this:<br />
<blockquote><span style="font-family: Verdana,Arial,Geneva; font-size: x-small;">This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.</span></blockquote>the President of the IDSA <a href="http://www.theday.com/article/20090803/OP05/308039963">said</a> this:<br />
<blockquote>IDSA's signing the agreement was not, as he alleges, an admission of guilt, but an effort to end a fruitless investigation that was costing our organization (and presumably Connecticut taxpayers) thousands of dollars.</blockquote>Denial, denial, denial. All this denial of conflict when we know that some members worked with the CDC to develop a Lyme vaccine and we know that some had consulting contracts with the insurance industry. Both of these areas of work have a significant influence of whether patients can get testing treatment. Yet, they were allowed to police themselves.<br />
<br />
In light of that, let's look at the recent announcement more closely. The sentence above is their <a href="http://www.idsociety.org/">home page</a> summary of the fuller announcement. It's one sentence, with so much packed into it. Let's start with the depiction of the review panel as "independent".<br />
<br />
How "independent" was that panel? When the IDSA announced their selections for the panel - oh, wait... <i>They</i> got to select who would be on the panel to review themselves? Is that "independent"? When I'm accused of a crime, may I pick my jury members, please?<br />
<br />
But I digress. When they made the announcement, they gave the professional background of the person they appointed as <a href="http://www.idsociety.org/Content.aspx?id=13310">Chair</a>:<br />
<blockquote>She is a past president of the National Foundation for Infectious Diseases (NFID) and IDSA.</blockquote>Past president of IDSA? Doesn't that constitute a conflict of interest? Somehow, I don't see someone, whose own professional background could be tainted by a negative finding, as independent. Even if she was not on the Lyme Guidelines Panel, the reputation of the entire IDSA, and certainly any officer, is at stake here. After all, if the guideline process was as flawed as the AG says it was, how did the IDSA allow a panel with conflicts of interest and a bullying approach to scientific review to exist? If they didn't self-police the ethics of that panel, how many of their other panels have similar issues? There is an institutional need to vindicate the Lyme Guidelines Panel, isn't there?<br />
<br />
It boggles the mind. Why didn't the antitrust settlement state that the members of the panel had to be free of past associations with the IDSA? At least at an officer level or having held any prominent position?<br />
<br />
I don't see this panel as independent. They were selected by and paid for by the IDSA and chaired by a past president of the IDSA.<br />
<br />
Onto the other assertion in that announcement: Did this panel recommend no changes? Actually, if you read through the <a href="http://www.idsociety.org/Content.aspx?id=16510">report</a>, they did recommend some changes. As the announcement states, they didn't direct the IDSA to make the changes "at this time" but said they should make for the next release of guidelines in 2012. Since these recommendations directly impact whether a patient can get testing or treatment, it seems negligent to wait. I'll give one example of what I mean.<br />
<br />
Perhaps, the lengthiest discussion section in the review panel's report had to do with one piece of the Executive Summary of the Guidelines:<br />
<blockquote><i>Clinical findings are sufficient for the diagnosis of erythema migrans, but clinical findings alone are not sufficient for diagnosis of extracutaneous manifestations of Lyme disease or for diagnosis of HGA or babesiosis. Diagnostic testing performed in laboratories with excellent quality-control procedures is required for confirmation of extracutaneous Lyme disease, HGA, and babesiosis</i></blockquote>By "extracutaneous", they mean a case of Lyme where the patient did not present the erythema migrans rash. <br />
<br />
There is a lot of back and forth in the discussion. I'll point out one bit:<br />
<br />
<blockquote>On the other hand, the Panel felt that in clinical practice, the presence of certain classic complications of Lyme disease such as aseptic meningitis, AV nodal block, inflammatory arthritis, and cranial or peripheral neuropathies, in a patient with epidemiologic risk of Lyme disease and in whom alternative diagnoses have been excluded or are unlikely, may be sufficiently convincing as to constitute an exception to the statement in the Executive Summary.</blockquote>In other words, there are cases where clinical judgment is appropriate for diagnosing an extracutaneous manifestation of Lyme.<br />
<br />
If that's true, shouldn't that be updated immediately?! I have a case of Lyme where I am unaware of ever having a rash. It took me years to get anyone to run tests other than the ELISA, which is known to miss up to half the cases of Borrelia, due to a lack of sensitivity. I'm "lucky" because, once I did pay for more testing (out of pocket, because insurance wouldn't cover it due to these IDSA guidelines) my test results came back definitively positive. They continue to do so. And I continue to be negative for anything else. But because of the required 2-tiered testing system laid out by these guidelines, I was two years delayed getting a diagnosis.<br />
<br />
That's two years while I'm having trouble walking, getting lost in my own house, having seizures, unable to bear light and sound, losing feeling in my fingers and feet and so much more. I have verified peripheral neuropathies. So, my case fits the type they are discussing here. How can they make anyone else suffer like that when they know that the guidelines are wrong? Why wait 2 years? I simply don't get it.<br />
<br />
If the guidelines acknowledged this possibility, when my peripheral neuropathies were confirmed, y doctor could have, based on the fact the I lived in New England and walked two dogs in the woods all the time, have made a clinical diagnosis without fear of the insurance companies reporting her and the state board threatening her license. Instead, she was trained that patients like me are crazy. And that's what she told me. I fired her that day and found a new doctor. One who recognized that something was wrong. She still felt constrained by the system, but she supported me seeking out an avenue to get to the bottom of it. I was "lucky".<br />
<br />
Patients like my shouldn't have to get lucky to get treatment. This review panel knows it. So, why aren't those guidelines changes immediately? Who is it serving to wait.<br />
<br />
I could go on about things that have a suspicious nature in this review process. They were supposed to have 9 members to avoid a tie and the IDSA didn't make a timely announcement when one member left the panel. One of the votes ended in a tie.<br />
<br />
All of the other votes are unanimous. Its a hotly contested subject. There are no definitive studies to back the IDSA's opinions, which is what these guidelines are: the opinions of those on the panel. They turn to two small and very limited studies about long-term antibiotics, where the patients were all diagnosed in early stage and didn't have co-infections, and base all their opinions on that. The review panel admits there are clinical observations that need fuller studies to be confirmed and the studies haven't been done. So, how is it that all the votes are unanimous? As Dr. Stephen Phillips <a href="http://www.greenwichtime.com/default/article/National-panel-concludes-chronic-Lyme-doesn-t-459159.php">noted</a>:<br />
<blockquote>...he's never seen a scientific panel reach a unanimous finding, which, he said, raises the question of whether the panel was interested in science, or "simply the rubber-stamping on an intransigent ideology.</blockquote>The investigation by the Attorney General was never about him or his office having an opinion on the science. It was about the ethics of the guidelines panel. He reported that their process was clouded with ethical improprieties that effect the business system for researching, testing for and treating Lyme Disease. Seems to me, if you want to get rid of that shadow from that cloud, you need to have impeccable ethics in your process of exonerating yourself. Such is not the case here. There are far too many places in which sunshine was not allowed to penetrate the cloud, leaving us all in the dark and rendering everything they say and do suspect.<br />
<br />
I'm not a doctor or a scientist or a lawyer, but when something smells fishy, the fish is already rotten. <br />
<br />
Hence the prevalence of the #IDSAfail hashtag in the Lyme-related Twitter stream.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com1tag:blogger.com,1999:blog-7506734243242824805.post-19332940264376946352010-05-05T05:54:00.000-07:002010-05-05T05:54:06.335-07:00Double DutyAs May is Tick-Born Disease Awareness Month, I find myself with double writing duty. I'm a member of a <a href="http://www.dailykos.com/user/LymeDiseaseAwareness">small team</a> at <a href="http://www.dailykos.com/">DailyKos</a> (a web site for progressive democratic political activism with over 200,000 subscribers and millions of page views) who keep the community there apprised of the issues surrounding Lyme Disease. We post sporadically throughout the year, but May is more intensive.<br />
<br />
Thus, I may be cross-posting and putting what I write for DailyKos here. I simply don't think I can keep up with two sets of writing. There will be posts here that are not on DailyKos, though. So, stay tuned.<br />
<br />
Thank you for your understanding.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-64249621458903249292010-05-05T05:46:00.000-07:002010-05-05T05:46:47.114-07:00May is Lyme Disease Awareness MonthI prefer to think of it as Tick-Borne Disease Awareness Month. I know. It's a mouthful. But, the truth is, all too often, those generous little ticks like to share more than one microscopic critter with us. When we think about Lyme, we also need to be thinking about Babesia, Bartonella, Erlichiosis, Rikketsia and others. You can see a full list <a href="http://www.columbia-lyme.org/patients/tbd_babesia.html">here</a>.<br />
<br />
Here's a fun little chart:<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbUqtJxjm3fSKQkxGJsZCmDgcPJMlsUpNXDI11PK0cS4cTXgP0qTp-DJVHu8phUhB9ECHg26gMD-wvraF_PWcVIaZRmQLFE8nATIC85tQEh0b8bK5LWiye-L-3Do9Fwi9V0BxuZOfzcK4/s1600/Diseases.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbUqtJxjm3fSKQkxGJsZCmDgcPJMlsUpNXDI11PK0cS4cTXgP0qTp-DJVHu8phUhB9ECHg26gMD-wvraF_PWcVIaZRmQLFE8nATIC85tQEh0b8bK5LWiye-L-3Do9Fwi9V0BxuZOfzcK4/s640/Diseases.jpg" width="492" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Click on the chart to see a fancier version, with pictures for identifying the ticks.<br />
<div style="text-align: left;"></div></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br />
</td></tr>
</tbody></table><br />
There you have it. Many of us get two or more of these. This is why I'd like to change the name "Tick-Borne Disease Awareness Month."Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-62091030820955731852010-04-26T17:03:00.000-07:002010-04-26T17:03:16.258-07:00Tech-i-nical DifficultiesPlease forgive me being so slow to follow up. The short of it is this: while there is an experience to relate, the treatment went well enough that it was deemed I could continue. However, since then I have felt as though a truck ran me over.<br />
<br />
I had two small social things to host this weekend and it was all I could do to appear functional and tolerate the stimulation. Sunday morning I lay in bed for hours unable to move. The full body pain was intense, as if everything had simply seized up into one giant cramp.<br />
<br />
A little better today.<br />
<br />
Will write more soon.<br />
<br />
Thank you for your patience.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com2tag:blogger.com,1999:blog-7506734243242824805.post-35459073252816141962010-04-24T20:29:00.000-07:002010-04-24T20:29:27.942-07:00Treatment: Day 1 pt 1I thought I might be able to "live-blog" yesterday, but it didn't work out that way. With all the time in the car (3 hrs each way), I needed to know how to post from my phone and I hadn't looked into that. As it turned out, I wasn't able to do much while sitting for the 4 hours of the infusion, either. So, I offer this report after a good night's sleep: <br />
<br />
It was a fairly uneventful 3+ hour drive down. We did run into some traffic on The Turnpike and had to call to let the clinic know we would be late. No big deal. As is usual for me, these days, I was disoriented most of the time. Before we even got to the highway, I was asking, "Where are we?!" After 5 years, this is still disturbing to me. I used to be so good at navigation. Just one more reason to appreciate my iPhone. (a recent acquisition, so I'm still in the honeymoon phase with it.)<br />
<br />
I had been told that I needed to be well-hydrated with electrolytes, so we had a couple of big bottles of Recharge on hand and a bag of sea-salted chips. I was also told that I could eat during the transfusion, so we stopped and picked up lunch at <a href="http://vernon.reinsdeli.com/ordereze/default.aspx">Rein's Deli</a>, our favorite stop anytime we're heading south on I-84. As a ex-New Yorker, I miss the delis in Manhattan and Reins offers me a moment of '<a href="http://en.wikipedia.org/wiki/Saudade">saudade</a>'. (wow. what *isn't* on the internet any more?! I can give a link to explain 'saudade', that's awesome.) While I'll often indulge in a Reuben, yesterday I got an egg salad sandwich. Yum.<br />
<br />
I wasn't in the mood to talk much. Early mornings are really difficult for me and getting in the car with the roaring of the tires, all the sounds of traffic, the morning sun burning my eyes, etc leaves me very unsociable. Add to that the anticipation and anxieties of heading to a first intravenous treatment and I was downright curmudgeonly with not the slightest amount of grace about getting the worst cup of tea. Ever. (ya know, tea won't steep if you put the cream in right way?! and it really won't be palatable if its only lukewarm to begin with. ugh. sigh. Yes, I still adore Rein's but they need a tea education.) I buried my self in a <a href="http://www.amazon.com/Eye-World-Wheel-Time-Book/dp/0812511816?ie=UTF8&tag=bostonlyme-20&link_code=btl&camp=213689&creative=392969" target="_blank">fantasy book</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=bostonlyme-20&l=btl&camp=213689&creative=392969&o=1&a=0812511816" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" />. (I'm not sure how I feel about starting a story with at least 13 volumes. Will I feel unsatisfied with such a long term of incompletion? Or will I enjoy having this world to be absorbed in? Sometimes, I actually grieve a little when I finish a book or a series, having loved the experience and the characters I'd been drawn into.)<br />
<br />
We arrived at about 11:20 for an 11:00 appointment and were told it would be another 15 minutes. I love my doctor and I admire that everyone working there seems to be in good spirits and enjoying their work. I can't stand the new offices, particularly the waiting room. Buzzing green fluorescent lights, tight space with video arcade machine and wide screen TV, a door that slams shut when not closed with care and the receptionist window which slides on ball bearings to make a sound which feels like your brain is being ripped open with a zipper pull. I have to manage the growing rage that comes with the ongoing sensory onslaught. You'd think a neurologist would have more sensitivity to this. I do realize that as a doctor who has opted out of the insurance game and is doing all he can to treat patients in desperate need, that he likely can't afford opulent office space and is keeping his overhead costs down. That's the rational part of me, appreciating his devotion and sense of mission. My lizard brain doesn't process it that way. <br />
<br />
I brought knitting, but couldn't really focus on what needed to be done next because it required some thinking and planning, so I just wove in ends. There were plenty of ends to weave in and that's a tedious task, so this was a good use of that time.<br />
<br />
"That time" was considerably more than 15 minutes. I was finally called back into the infusion room at about 12:30.<br />
<br />
Things were lively, nearly hectic, in the infusion suite. Two people were already in the room filled with reclining chairs. Each with their own satellite tower holding their personal container of fluid, connected to them via long, supple tubing. Another woman was getting a 'midline' installed and receiving her operating instructions and being oriented about what to expect when the nurse comes to her house once a week. She was cheerful, but clearly a bit anxious and seemed overwhelmed. I'd be overwhelmed, too. They handed her a box that was about 30" cubed full of supplies which have to be refrigerated. If I had to put all that in my fridge, there'd be no room for food. We joked about the infusion diet, but you could tell hers was nervous laughter.<br />
<br />
I waited for the nurse to finish up with her and to prepare my setup. I was informed that it was standard practice to give the patient Tylenol and Benadryl before an immunoglobulin infusion. There was concern that my system is very sensitive. The two nurses talked to each other about what to do and then one of them went to talk to the doctor. It was decided that I would have Claritin, instead of Benadryl. I've never taken either, as I don't recall ever using an antihistamine, so I have no idea why Claritin would be better than Benadryl. I simply complied and swallowed.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com4tag:blogger.com,1999:blog-7506734243242824805.post-39086860925895992672010-04-24T08:41:00.000-07:002010-04-24T08:41:34.866-07:00At Least They Published ThisBefore I continue critiquing news articles that fraught with journalistic fail, I'd like to acknowledge that after printing one of these articles, the Star Tribune in Minneapolis/St. Paul did, at least, print this follow-up opinion piece:<br />
<h1><span style="font-size: large;"><a href="http://www.startribune.com/opinion/commentary/91867889.html">Elizabeth Maloney: We've much to learn about Lyme disease</a></span></h1><h1><span style="font-size: large;"><span style="font-size: small; font-weight: normal;">Given that Dr. Maloney opens with a rather scathing criticism of the paper itself, I give kudos to them for having the forthrightness to publish it:</span></span></h1><blockquote><h1><span style="font-size: small;"><span style="font-weight: normal;">The April 12 article about the resolution passed by the Minnesota Board of Medical Practice ("Activists and doctors divided over Lyme disease treatment") brought many questions to mind, including: "When did the Star Tribune morph into Fox News?" The article used buzzwords and themes known to inflame physicians, and it misled readers regarding the professional credentials and capabilities of physicians who recognize that persistent/chronic Lyme exists.</span></span><span style="font-size: large;"><span style="font-size: small; font-weight: normal;"> </span></span></h1></blockquote>One of my main criticisms of the journalism surrounding Lyme Disease is exactly what she points out here: all too often, proponents of the Infectious Disease Society of America (IDSA) and their "guidelines" are presented as the only ones who have professional credentials and the prestige of a legitimate medical association behind them. Those who recognize the persistence of the disease are presented as "Lymies" who are not professional, or, if they actually quote a doctor, the impression is given that this is a rogue outlier and they are not linked to the larger association of medical professionals who recognize this truth: the International Lyme and Associated Diseases Society. Any reader who is not already educated on the subject is likely to discount the word of a "Lymie", don't you think?<br />
<br />
I'm not sure why the Star Tribune has taken a step in the right direction by publishing Dr. Maloney's piece. I would like to think that their own sense of integrity was intact. Perhaps, it is. Perhaps, they got enough letters and comments from people after their April 12th piece that they felt compelled to publish it. If they really wanted to do the right thing, though, they'd do a more well-researched, in depth news piece that gives the public a more serious look at the issue.<br />
<br />
We're talking about a topic that effects the lives of tens of thousands, perhaps hundreds of thousands, or people. If the news industry is really interested in doing the public a service, perhaps they could begin by focusing on one question: how is it that after the IDSA has been shown to have had major conflicts of interest - that is, ethical issues - it was allowed to essentially police itself, <a href="http://www.lymedisease.org/news/lyme_disease_views/400.html">hire a past president of the IDSA</a> to chair the policing, and then violate the terms of the antitrust settlement which set the rules for the policing? When do we stop seeing them as a credible source of information and strip away their rights to authority? When do we start talking about them as the "Lyme Deniers"? How blatant does someone's lack of integrity have to be?<br />
<br />
It doesn't take much digging to see what's gone on behind the scenes regarding Lyme Disease. There are books on the subject. One by an acclaimed science journalist: "<a href="http://www.amazon.com/Cure-Inside-Epidemic-Pamela-Weintraub/dp/0312378130?ie=UTF8&tag=bostonlyme-20&link_code=btl&camp=213689&creative=392969" target="_blank">Cure Unknown</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=bostonlyme-20&l=btl&camp=213689&creative=392969&o=1&a=0312378130" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" />". Others laying out the history, too, such as "<a href="http://www.amazon.com/Beating-Lyme-Understanding-Treating-Misdiagnosed/dp/081440944X?ie=UTF8&tag=bostonlyme-20&link_code=btl&camp=213689&creative=392969" target="_blank">Beating Lyme</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=bostonlyme-20&l=btl&camp=213689&creative=392969&o=1&a=081440944X" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" />".<br />
<br />
So, I applaud the Star Tribune for publishing Dr. Maloney's opinion piece. Still, it doesn't carry the same weight as a news piece. It doesn't begin to help the public see that we have one more case in this country of anointing someone one or some group with authority, which has been abused. That it is up to us, to stand up to that abuse and to stop allowing folks with serious integrity issues to rule the day.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-30874717260693360942010-04-22T17:06:00.000-07:002010-04-22T17:06:17.793-07:00Can't Focus. Tomorrow is Big.I had planned to post a review of a <a href="http://minnesota.publicradio.org/display/web/2010/04/20/hallberg-deer-ticks/">piece that the Minnesota Public Radio posted</a> on its site yesterday. I've begun the draft, but I can't focus.<br />
<br />
Then the IDSA announced that their review committee (that one where those folks who are accused of ethics violations get to oversee the review of themselves and then violate the antitrust agreement which outlined the voting procedure of the review. You know, that one.) has voted to make zero changes to their guidelines. That warrants a significant response. But, I can't focus. <br />
<br />
Tomorrow I start my Intravenous Immunoglobulin (IvIg) treatment.<br />
<br />
That seems like a simple statement, right?<br />
<br />
Yet, there is so much packed in there. I first went to a doctor because I was feeling "poisoned" all the time in 2005.<br />
<br />
I have a plethora of emotions and myriad questions. I'm ecstatic and anxious and hopeful and cynical. Will I tolerate it? Will it work? How long will it take? What will it be like to be well again? Will my daughter like who I am when I'm healthy? What will I pursue to earn a living when I regain my health? What if it doesn't work? How depressed will I get?<br />
<br />
Can I knit for the 4 hours the Iv line is in my arm? Can I walk around? Can I eat? Will it be cold? Or hot? Will it wear me out or energize me? Will my symptoms get worse before they get better?<br />
<br />
Will I be able to perform on the violin?<br />
<br />
Okay. Old joke.<br />
<br />
So, what does any erstwhile compulsive personality do when she's feeling so overwhelmed? She organizes her sock and underwear drawers. Oh yeah.<br />
<br />
I think I've done other stuff today. Not sure, though. I'm nursing a big headache and nausea over sounds or making an effort to think or trying to have a conversation. Very strong burning all over my skin. Worst on my ankles and lower legs. Non-stop yawning. Walking the dog nor caffeinated tea helped.<br />
<br />
So, I think I'm checking out for the eve.<br />
<br />
Hmmm. Maybe I'll liveblog my treatment.....Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-50047415912204491572010-04-20T12:13:00.000-07:002010-04-20T12:13:38.863-07:00Journalistic Fail: Look Through the Keyhole!Today, the Washington Post has a piece about Lyme Disease in their health section: "<a href="http://www.washingtonpost.com/wp-dyn/content/article/2010/04/19/AR2010041903164.html%20">Ticked Off Lymies Challenge Experts</a>", by Maura Lerner<br />
<br />
<b>Synopsis</b>:<br />
A woman who was treated with a short course of antibiotics for Lyme Disease, was devastated three months later when her entire body went numb and she was diagnosed with MS. She learned about the possibility of treating her condition as Lyme Disease, did a 14 month course of antibiotics and recovered her health.<br />
<br />
An infectious disease specialist from the Infectious Disease Society's (IDSA) Lyme Disease Panel in 2006, says that politicians are practicing medicine by passing legislation related to Lyme. He says this woman's treatment "makes no sense" and that the long-term use of antibiotics is dangerous, as there is no evidence it works.<br />
<br />
A second doctor, a family practitioner, says the antibiotic question is not proven one way or another and you have to do something for people who are still suffering after a short-term treatment.<br />
<br />
A third doctor, another infectious disease specialist, says that many of these people who claim to have Lyme don't have it.<br />
<br />
Finally, the patient in the story says she doesn't care about their medical debates, she knows she had Lyme and she knows the treatment worked for her.<br />
<br />
<br />
<b>Review</b>:<br />
<i>Quoting members of the IDSA</i>:<br />
I'm glad to see that Ms. Lerner at least mentioned the anti-trust investigation against the IDSA's 2006 panel. It is a vast improvement over quoting them as the experts without mentioning this at all.<br />
Still, it falls short of clarifying why this investigation is so important. Also, I wish she would do more and get the particulars on the conflicts of interest. For instance, did Dr. Bakken have any conflicts of interest? (Almost every one of them on the panel at the time did.) It profoundly impacts whether you deem his opinions credible. <br />
<br />
<i>Why was the IDSA panel investigated</i>?:<br />
The investigation of the IDSA wasn't solely about conflicts of interest. The key reason for the investigation and resulting antitrust settlement was this:<br />
<br />
<blockquote><a href="http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284"><span style="font-family: Verdana,Arial,Geneva; font-size: x-small;">The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.</span></a></blockquote><br />
If you're writing a journalistic piece and quoting someone from a panel which has been investigated by an Attorney General, aren't you obligated to speak to the AG about said investigation? To understand why he pursued it and what he found? It's not an every day occurrence, a medical panel being investigated this way and being forced into a settlement agreement. In fact, it is unprecedented.<br />
<br />
Isn't it your job, then, to explain to your readers why this is so important? Your readers need to understand how conflicts of interest and suppression of evidence impact people's lives. We're not talking about whether a new color of M&M's is a stolen formula from Skittles. People are losing their abilities to function. They are sick and dying.<br />
<br />
These guidelines issued from these medical panels are used by the CDC, the insurance industry and doctors to determine if someone has a particular disease and how to treat it. If the process for creating those guidelines is corrupted it has a profound impact. Patients deserve better. They have the right to the best possible understanding of their disease and how to treat it, regardless of who might make money or who is protecting their reputation.<br />
<br />
<i>There is more than one Lyme-related medical society</i>:<br />
Ms. Lerner gave the weight of an entire medical society to the opinion held by Dr. Bakken. She then treated Dr. Malloy's opinion as that of a single practitioner. If Dr. Malloy were alone in her view, some rogue doctor, well that would be appropriate. However, this is not the case. In fact, there is another medical society who views the evidence about Lyme Disease quite differently from the IDSA. They are called the International Lyme and Associated Diseases Society (ILADS). Proper journalism would require that you check out whether the IDSA is the only organization that investigates the science and renders an opinion about this disease.<br />
<br />
Where are the references to ILADS, Ms. Lerner? Why is the conflicting opinion presented as such an outlier?<br />
<br />
<i>Unchecked accusations</i>:<br />
When doctors accuse politicians of "practicing medicine", aren't you obligated to investigate whether politicians are? Why do you let that accusation stand?<br />
<br />
The AG's report on his investigation makes it clear that he is not "practicing medicine". Rather, he is shining a light on the investigative process of a panel which wields a lot of power in the world of medicine. You don't have to be a doctor or a scientist to assess an investigative process.<br />
<br />
Legislators are not practicing medicine, either. They are protecting doctors and patients who are being victimized because of a corrupt process that generated "guidelines" which are being used as law. In fact, doctors and insurance companies could be accused of practicing law. Legislators are taking back the power to practice law.<br />
<br />
What do I mean? Well, doctors who subscribe to the IDSA rule of law will file charges against other doctors who are trying to treat patients with Lyme Disease. The sole justification for these charges is that the treating doctor is not following IDSA guidelines. But, if they are "guidelines" and not "law" then why isn't a licensed doctor allowed to treat his patient as he sees fit? Let's be clear, it is not the patients filing these charges. In many of the cases, the patient got better under the accused doctor's care. It is insurance companies (because they love any justification for denying care) and other doctors. They are testifying against doctors at state medical board hearings. That's a legal venue. So, they are stepping out of their role as medical practitioners and into a role as some kind of anointed deputy.<br />
<br />
What legislators are doing is looking at the process, wherein the IDSA panel suppressed evidence, and saying, "You can't then use the results of that process to legally punish doctors and deny patients treatment." They are not dictating how a doctor must practice medicine. They are dictating how the law is being applied to doctors. That is their jurisdiction.<br />
<br />
Don't leave accusations unchecked, Ms. Lerner.<br />
<br />
<i>"Makes No Sense" and "Probably don't have Lyme"</i><br />
These are not quotes based on facts. They are steeped in opinion. How about challenging those opinions? If Ms. Backes was diagnosed and treated for Lyme. When she later became ill, there was no other diagnosis but MS. However, <a href="http://www.ilads.org/lyme_disease/lyme_tips.html">ILADS</a>, the <a href="http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html">Lyme and Tick-borne Disease Research Center</a> at Columbia, the <a href="http://www.ajnr.org/cgi/content/full/30/6/1079">American Journal of NeuroRadiology</a>, the <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2148032/">National Center for Biotechnology</a> and many more, recognize that Neuroborreliosis (Neurologic Lyme) can look like MS. So, why does it "make no sense" that this woman would have been told she had MS and then, in an attempt to see if she actually had something treatable - since she did have a history of Lyme Disease - was cured with a treatment for Neurologic Lyme? And, how do you explain her recovery from supposed MS? It sounds like a throw away opinion given by someone who doesn't want to face that his view on the subject might be incorrect. Shouldn't he be questioned on that?<br />
<br />
Then we have another infectious disease doctor who proclaims that "many of these patients probably never had Lyme disease at all". Wow. Now he's diagnosing patients he's never seen. According to the <a href="http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm">CDC</a>, Lyme Disease is a clinical diagnosis.<br />
<blockquote><div class="body"><span style="font-family: Verdana,Arial,Helvetica,sans-serif; font-size: x-small;">Lyme disease is diagnosed based on <a href="http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_symptoms.htm">symptoms</a>, objective physical findings (such as <a href="http://www.cdc.gov/ncidod/dvbid/lyme/ld_LymeDiseaseRashPhotos.htm" target="_blank">erythema migrans</a>, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are <u>not</u> generally recommended when a patient has erythema migrans. For detailed recommendations on serologic testing, <a href="http://www.cdc.gov/mmwr/preview/mmwrhtml/00038469.htm" target="_blank">click here</a>. <br />
</span></div><div class="body"><span style="font-family: Verdana,Arial,Helvetica,sans-serif; font-size: x-small;">When making a diagnosis of Lyme disease, health care providers should consider other diseases that may cause similar illness. Not all patients with Lyme disease will develop the characteristic bulls-eye rash, and many may not recall a tick bite. Laboratory testing is not recommended for persons who do not have symptoms of Lyme disease.</span></div></blockquote>How is this doctor allowed to make such a spurious claim about thousands of patients whom other doctors have seen and he has not? Just because it doesn't suit his worldview about Lyme Disease? Why do we even report such an unsubstantiated claim?<br />
<br />
Did you ask him about all the patients who have never tested positive for anything else, but have tested positive for Lyme? Why are they denied treatment if they continue to have symptoms after the short course of antibiotics? There is no scientific proof that a) a short course of antibiotics definitively cures a human patient of Lyme Disease and b) that persistence of the disease is not possible. So, when a patient is found to have Lyme Disease and isn't cured with the proscribed treatment, why do you assume that it must not be Lyme? That simply defies logic.<br />
<br />
And what about the myriad cases of ALS and MS that have miraculously been reversed with long-term antibiotic treatment? Or the prevalence of co-infections?<br />
<br />
In this short piece of journalism, Ms. Lerner has actually done more justice to the doctors and patients fighting Lyme Disease than many other journalists have done. Still, it falls far short of informing the public about what is really going on. It doesn't begin to get out the way money and ego trump the needs of patients. How vulnerable people, disabled by a horrible disease have to muster the wherewithal to fight tooth and nail for a chance to regain their health.<br />
<br />
The keyhole into this mysterious world is the investigation done by Attorney General Blumenthal. Journalists need to look through that keyhole and bust open the door.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com1tag:blogger.com,1999:blog-7506734243242824805.post-84746454600072214912010-04-20T11:08:00.000-07:002010-04-20T11:12:36.299-07:00Mission: Lyme JournalismI hereby declare a very specific sub-mission regarding Lyme Disease Awareness:<br />
<br />
I will push back against journalistic weaknesses in every article I read about this disease. It will be an ongoing series on this blog. Want to help me name the series? Post in the comments.<br />
<br />
I get weary reading these stories where there is no digging, at all. As a layperson, I can find more information shining a light on the background of these issues than a journalist?<br />
<br />
I don't think so. I think that journalism is in decline as the industry is taken over by corporations which are not dedicated to the mission of the <a href="http://www.amazon.com/End-Times-Fourth-Estate-Counterpunch/dp/1904859372?ie=UTF8&tag=bostonlyme-20&link_code=btl&camp=213689&creative=392969" target="_blank">4th Estate</a><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=bostonlyme-20&l=btl&camp=213689&creative=392969&o=1&a=1904859372" style="border: medium none ! important; margin: 0px ! important; padding: 0px ! important;" width="1" />. Profits are more important than speaking truth to power. In a world where people are consuming information at a rapid pace, 24 hrs a day, news corporations are more interested in pumping out product than providing meaningful content. They don't have the patience it takes to dig into a story deeply, so they print whatever they can get in the fasted time possible.<br />
<br />
At least that's how it looks.<br />
<br />
Well, I can do my one little part. I know a bit about what's going in the realm of Lyme Disease. And I have a strong sense of logic and discernment. So, when news outlets publish something related to Lyme, I can practically smell the weaknesses.<br />
<br />
I'll sniff out what I can and report what I find here. I hope you find it useful.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-39348948526587183062010-04-16T06:08:00.000-07:002010-04-20T12:07:41.866-07:00Journalistic Fail: "It Just Doesn't Resonate"Local television station WBZ has posted a story about Lyme Disease on their <a href="http://wbztv.com/local/lyme.disease.treatment.2.1633722.html">web site</a>. In the piece there are two patients cited who a) had difficulty getting a diagnosis when they were sick, and b) got better when they were finally put on long-term antibiotics. One of those patients had been paralyzed and the other had been told she had a year to live. After finally getting diagnosed with Lyme and being given long-term antibiotic treatment, both improved. Neither has died.<br />
<br />
The piece is entitled "Doctors Divided on Treatment of Lyme Disease". The author, Joe Shortsleeve, after giving the history of these two cases, goes on to tell us that getting treatment is difficult. Both patients, though they had health insurance, had to go out of state and pay out of pocket for their treatment. He explains that this is because the Infectious Disease Society of America (IDSA), is against this treatment. He then quotes two different doctors and their opinions on the subject.<br />
<br />
Ok.<b> </b><br />
<b>Rant #1:</b><br />
<br />
What Joe Shortsleeve fails to mention is that the IDSA wields an enormous amount of power in the medical world. That they are the law of the land when it comes to guidelines defining the disease, how it will be tested and accepted treatment protocols. He also fails to inform the audience that the IDSA had to agree to an <a href="http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284">antitrust settlement</a> with the CT State Attorney General because:<br />
<blockquote><span style="font-family: Verdana,Arial,Geneva; font-size: x-small;">"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.</span> </blockquote><br />
He further failed, to report that the <a href="http://www.connecticutplus.com/cplus/information/news/News_1/IDSA-violates-Lyme-antitrust-settlement-agreement-with-Connecticut-Attorney-General73547354.shtml">IDSA violated this antitrust agreement</a> by purposefully manipulating and avoiding transparency in the review process.<br />
<br />
This irks me. It is shoddy journalism to do a report like this where you do not question the credibility of an organization with power. They have been investigated by an attorney general and they have violated the antitrust settlement agreement that resulted from that investigation. Why do they continue to be referenced without pointing this out?<br />
<br />
And what about looking into other medical associations? It is not simply individual doctors who disagree with the IDSA on this subject. <br />
<b> </b><br />
<b>Rant #2</b><br />
<br />
What does the doctor who supports the IDSA approach to denying treatment to sick patients have to say to defend this position,<br />
<blockquote>"The concept that Lyme disease germs can be lurking in one's body open endedly… just hasn't been resonating," said Dr. Mark Pasternack</blockquote>Seriously? You're talking about people's lives in the balance and you support denying them treatment because "it just hasn't been resonating"? Wow, there's a powerful scientific argument.<br />
<br />
Where is the journalistic ethic that asks, "and do you have science that proves that the germs can't lurk?" I mean, look at those two cases up above. You're talking about denying treatment to a woman who was paralyzed and another who was given a death sentence. The reporter thought it was satisfactory to leave it at "just hasn't been resonating?"<br />
<br />
<b>Rant #3</b><br />
The report does, then, mention what the IDSA claims is a concrete reason for denying treatment: Long-term antibiotic use comes with risks.<br />
<br />
You may be completely debilitated but we don't think you should have long-term antibiotics because there is risk.<br />
<br />
Where is that dogged journalistic nature that asks, "Are these risks any greater than the risks taken to treat other diseases?" or "Do we use long-term antibiotic treatment for any other diseases?"<br />
<br />
This irks me to no end. The public needs to understand that thousands of patients across the United States are living disabled lives because of the IDSA. An organization who<br />
<ol><li>was shown to be corrupt in an antitrust investigation</li>
<li>was proven to lack integrity when they violated the antitrust settlement that resulted from that antitrust investigation</li>
<li>who have no science to prove their position and use a lame defense of "it just hasn't been resonating"<br />
and</li>
<li>deem that disabled and dying people should not be able to take risks to recover their health, when those same risks are not denied for people with other diseases.</li>
</ol>Why do we, in this country, continue to give credibility to people and organizations who have clearly demonstrated that they don't deserve it?<br />
<br />
When will get back to expecting quality journalism and quit accepting stenography?<br />
<br />
I'll tell you what doesn't resonate: the IDSA as a credible source of information.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com3tag:blogger.com,1999:blog-7506734243242824805.post-56713912170821818172010-04-14T18:56:00.000-07:002010-04-14T18:56:17.128-07:00OMG! OMG! OMG!Dare I believe it?<br />
Can it be true?<br />
<blockquote><span style="font-family: "Courier New"; font-size: 10pt;">Good afternoon, Mrs. N. My name is S @ I am in the insurance department @ AOM (American Outcomes Management). I want to touch base with you regarding your benefits. We are a participating provider with your insurance carrier, Harvard Pilgrim and authorization has been secured for your IVIG home infusion therapy. You have a $500 deductible and that has been met. Your plan will provide reimbursement @ 100%. I am going to forward that information to you in the mail. There are a couple of forms for you to sign and mail back to me. I will also enclose a letter and you are welcome to call me with any questions or concerns and of course you will have my email address. Please let me know if there is anything I can help you with. Thanks </span></blockquote><br />
After all this time, it seems almost unreal. A quiet little unassuming email. So matter-of-fact. But there it is. My treatment has been approved!<br />
<br />
Am I actually on my way to wellness? Or, at least functionality?<br />
<br />
After all these years. One little change in our insurance. Going from an HMO plan to a PPO plan. Then, my neurologist writes one letter of medical necessity and provides it to this in-network service and, voila!, its done. In a matter of weeks. Wow.<br />
<br />
I'm stunned. I'm thrilled. I'm afraid to be thrilled. I'm almost paranoid. Will the insurance retroactively deny again? Will I start feeling better and then they come along and pull the plug?<br />
<br />
I'm not sure I'll really believe this is finally happening until that IV line is in my vein. But, wow, an approval letter!<br />
<br />
Oh my gawd! Oh my gawd! Oh my gawd! Is my nightmare coming to an end?!Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-80223780991808734832010-04-12T10:50:00.000-07:002010-04-14T11:30:17.042-07:00Write Your Attorney General!Thanks to the <a href="http://www.lymedisease.org/news/lymepolicywonk/389.html">Lyme Policy Wonk</a>, I've learned that the IDSA plans on releasing the results of its guidelines review process some time this month. (The IDSA buried the announcement on their web site and has not done anything else to let everyone know that they are forgin ahead.) As far as we know, they have not responded to <a href="http://www.connecticutplus.com/cplus/information/news/News_1/IDSA-violates-Lyme-antitrust-settlement-agreement-with-Connecticut-Attorney-General73547354.shtml" target="_blank">CT Attorney General Blumenthal's</a> request to re-do their voting, in order to be in compliance with the <a href="http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf" target="_blank">antitrust settlement agreement</a> the IDSA signed.<br />
<br />
To support AG Blumenthal's work to keep the IDSA in compliance, and to raise awareness to all State's Attorney Generals, please write to the Attorney General in your state. Ask your AG to offer public support. Here is the letter I wrote:<br />
<br />
<br />
<blockquote><a href="mailto:ago@state.ma.us">Martha Coakley</a>, Attorney General <br />
<br />
Dear Ms. Coakley, <br />
<br />
I email you today to alert you to an injustice being inflicted upon patients with Lyme disease, not only to those in other States, but to many citizens throughout the Commonwealth of Massachusetts. I believe you are in a position to help rectify this wrong. <br />
<br />
In 2008, <a href="http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284" target="_blank">CT Attorney General Richard Blumenthal announced</a> that the members of the Infectious Disease Society of America (IDSA) were found to have many conflicts of interest which eroded the credibility of their 2006 Lyme Disease Treatment Guidelines. An <a href="http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf" target="_blank">antitrust settlement agreement</a> was reached which required the IDSA to establish a conflict-free panel for a publicly transparent review of those guidelines. <br />
<br />
Now we find that the IDSA is manipulating the voting process to favor no change in the guidelines, in violation of specific procedures laid out in the antitrust agreement. <a href="http://www.connecticutplus.com/cplus/information/news/News_1/IDSA-violates-Lyme-antitrust-settlement-agreement-with-Connecticut-Attorney-General73547354.shtml" target="_blank">Attorney General Blumenthal has confirmed</a> that the IDSA's review panel voting procedure violates the written agreement. He has written them to request they re-vote to be in compliance.<br />
<br />
Patients with Lyme disease in Massachusetts may be negatively affected by these guidelines. IDSA Guidelines can alter insurance coverage and make it difficult or impossible for patients in Massachusetts to receive appropriate treatment <br />
<br />
Along with other attorneys' general in states such as New York and Connecticut, I urge you to show your public support for enforcement of the antitrust settlement. </blockquote><blockquote>What is happening to Lyme patients via the IDSA's conflicts of interest and the insurance industry's priorities of profits over patients is a prime example of the flaws in our medical system. Patients do not and should not have to understand the science behind their illness and the politics behind their care. They should be able to turn to their licenses doctors with the faith that they can readily obtain the best information available about their condition and feel free to treat them as they see fit. When this is not the case, the only recourse open to patients and their loved ones is to turn to higher authorities to put a check on any abuses of power. We don't ask that you assess the science, we simply ask that you support Attorney General Blumenthal's assessment of the process by which the science is being reviewed.<br />
<br />
I hope you will contact CT AG Richard Blumenthal to help keep the IDSA honest and non-biased in their pursuit of Lyme disease guidelines. <br />
<br />
Thank you.<br />
<br />
Sincerely,<br />
<br />
</blockquote>Feel free to copy my letter and edit it to suit your own style. Thank you!Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-14788816005482454852010-04-08T16:37:00.000-07:002010-04-08T16:37:40.748-07:00Tough DecisionsI have a prescription from the neurologist for a <a href="http://science.hq.nasa.gov/kids/imagers/ems/infrared.html">Far Infrared</a> Sauna (FIS). Even with a prescription, insurance won't cover the cost, so we'd have to pay for it ourselves. We can use our Flexible Spending Account (FSA) money for it, but it would use up the entire balance of that savings for the year. And next year, the limit on how much salary you put aside for spending on medical expenses not covered by insurance will be cut in half. The FSA money is intended for the entire family, not just for me. Do we use it all just for this?<br />
<br />
If so, what do we do if I'm approved for IvIg and the doc says I need to go back on antibiotics at the same time? The IvIg is to recharge the immune system and help rebuild nerves so that you reverse neuropathies. Both of these will be almost meaningless if I still have Borreliosis (Lyme), Bartonella, Babesia and Rikketsia (Rocky Mountain Spotted Fever) ravaging my system. So, it makes sense to attack those during the IvIg treatment and hope for some real healing. However, the insurance company has already stated that I'm cured and won't cover further treatment for Lyme. So, we'd have to pay for that ourselves.<br />
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Therefore, I'm thinking that we should hold onto the FSA money.<br />
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That said, no one is claiming that any of this is going to cure me. Those Lyme spirochetes are facile at hiding out and re-emerging. More and more in the world of Lyme Disease, we are facing the reality that "cured" may not ever apply. What you can do is treat well enough that you can manage it. One known effective management tool is FIS. <br />
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Here are the claims of <a href="http://www.goarticles.com/cgi-bin/showa.cgi?C=1617393">general health benefits </a>of FIS:<br />
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<blockquote><b>Health benefits</b> <br />
Detoxification: <b><a href="http://www.cwglive.com/lifestyle/infraredsauna/FarInfraredSauna.php">Infrared saunas</a></b> remove the toxic material of the human body through sweat and urine. This improves the human metabolism. <br />
Improved blood quality: The blood quality improves due to removal of toxins. The average oxygen level of blood improves over the long term. <br />
Skin improvements: The skin is deep-cleansed. Dust and dirt gets removed from deeper inside your skin. <br />
Joint pain removal: The far infrared sauna, being a dry sauna in nature, helps one to get rid of joint pain. <br />
Soft heating effects: The soft heating effect of the FIR sauna provides you a long term benefit on your overall health, including your cardio-vascular system (heart and blood system). As a result you enjoy a longer and healthier life. </blockquote><br />
Infrared sauna is different from regular saunas. It uses <a href="http://www.earthtym.net/ref-far-infared.htm">infrared energy</a> as the heat source:<br />
<blockquote><b><span style="color: #000099;"> Radiant heat is simply a form of</span> energy that heats objects directly through a process called conversion, without having to heat the air in between. Radiant heat is also called infrared energy (IR). Our sun is the principal source of radiant energy that we enjoy daily (some more so than others).</b> </blockquote><blockquote><b><span style="color: #000099;"> Have you ever been outside on a partly cloudy</span> spring day of about 50 degrees F. and felt quite comfortable until the sun was suddenly obscured by a cloud? Although the air temperature had not had time to drop, you felt chilled, as the cloud would not let the warming infrared rays through to reach you. </b></blockquote><br />
Infrared heat penetrates more deeply into the body and raises core body temperature, which is not accomplished by other heat sources. This better stimulates sweat glands and lymphatic systems and circulation. For Lyme sufferers, the lower temperature of a FIS is key, because we become heat intolerant. While summer used to be my favorite season, I can no longer tolerate the light nor the heat. A regular sauna is torture. The second key benefit for Lyme sufferers is that this deep core heat helps the body to release toxins as it sweats. The Lyme spirochete releases neurotoxins which damage the brain and peripheral nervous system. Detoxifying can be key to winning the battle of nerve damage. <br />
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If I am to live with Borrelia Burgdorferi in my body, a far infrared sauna could be key to minimizing symptoms and maximizing functionality. In the long run, its an excellent investment in my health. One could argue its a wise investment in good health in general, but it certainly looks like it could be particularly necessary for me.<br />
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So, what's more important? Getting all the antibiotics to go with the IvIg treatment or getting the sauna for long-term symptom management? These are the types of choices I have to make all the time, as we've been nearly bankrupted by this disease and the cartel-like power of our insurance industry. I'll likely wait until I know whether the IvIg approval comes through before hunkering down and facing the decision definitively.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-85716036924066540352010-04-06T14:29:00.000-07:002010-04-06T14:29:43.985-07:00Silence Equals Death?Part of the challenge of being a patient with Lyme Disease is that I must navigate the medical/political territory with some care. I can't pretend that my writings here are anonymous. Therefore, I do have to consider that my insurance provider could come across my writings and somehow use them against me.<br />
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My bigger concern, however, is for my doctors. At this point, I'm not getting treatment. The insurance company retroactively denied what little treatment I was getting. According to them, I am cured of Lyme. I'm told that Harvard Pilgrim Health Care has a lifetime limit on how much treatment you can receive for Lyme Disease. So, how much worse can it get for me, really? I don't think they can proactively kill me.<br />
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They can, however, make big trouble for doctors. Did you know that they can file claims against doctors anonymously? Its a twisted used of confidentiality laws which allow patients or employees to make reports without feeling vulnerable to their doctor or boss. I think we need to clarify those laws and limit who can make claims with anonymity. When a corporation with big pockets can file claims, they can ruin the reputation of or bankrupt a doctor just because they don't want to pay for patient care. Even if the cases have no merit, they cost the doctors so much in legal fees that they can no longer practice medicine. Its called harassment, in my book. Since most medical offices receive the vast majority of their income via their patients' insurance companies, they live in fear of the power these companies have over them.<br />
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Even when doctors have no claims that patients have suffered harm under their care, they can be dragged through years of hell in courts. Look at the case of <a href="http://underourskin.com/blog/?p=715">Dr. Jones</a>, the only pediatric doctor in Connecticut who will treat children with persistent Lyme. What is striking about the continuing pursuit by the medical board is that never, in any single complaint, is anyone saying that his patients were not treated well. Indeed, they thrived under his care, most after suffering quite some time under the care, or lack thereof, of other doctors. He is 80 years old and unwilling to shut down his practice because no one else will treat these children. When you read the article, note the punishment handed down to him and what his supposed infractions are compared to other punishments meted out by the state medical board. He is punished for reading test results and consulting over the phone and then prescribing antibiotics - which did help the patients - far more harshly than doctors who are practicing under the influence of mind-altering substances.<br />
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I point out this ridiculously unfair system because I must be sensitive to it as I try to share my experience with fighting for my health care. I have recently had appointments with two different doctors. They reach the same conclusions: I continue to test positive for Lyme & I have demylineation of my nerves. I need treatment for both.<br />
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How to get me treatment and the experiences of each doctor are vastly different. They are different because they are human beings with different temperaments and personal styles and different current life circumstances. They are also different because one of them is beholden to the insurance companies for an income and the other is not. Another difference: one is in a state with a modicum of protection written into the state laws now and the other is in a state where the same law is being held hostage. Both have been threatened with sanctions from their respective medical boards. For one, this creates a wariness. For the other it does not.<br />
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If I were not a patient who was "in the know" about what goes on behind the scenes in the medical world, I would have no idea why I could experience such a range of possibilities. (Of course, the other possibility is a neurologist who denies that I'm sick at all. Who buys into the IDSA claim that all of us who continue to have symptoms after 4 weeks of antibiotics are victims of a psychosomatic syndrome. I fired those doctors.)<br />
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This blog is designed to be informative. I'm a layperson, so I can only inform about the medical particulars in a layperson's way. What I can impart with authority is the patient experience. The painful, frustrating, drawn out experience. The reader can best get a sense of it if I can share details. The devil is in the details, right? The comparison of my last two appointments would be illuminating. It could help other patients know what to look for and what they might be up against, even when working with doctors who want to help you.<br />
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However, I'm not sure I can do that. As soon as I discuss details, I risk the anonymity of my doctors. I also risk them taking it the wrong way. They do their work under a lot of duress and I don't want to add to that. That puts my own care at risk. Frankly, I can't afford to raise the risk that I won't get care. The road to treatment is so precarious as it is.<br />
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Yet, I have long understood the slogan 'Silence Equals Death.' Abusers and oppressors count on it. Our own self-preservation can be dependent on the very ones who abuse and oppress us. The brave souls who risk everything by speaking out at their own peril trigger the beginning of the end of abuse. My concern is more complicated, because it is not simply myself I put at risk. Yet, I'm not sure that, even if it were just me, I would take the risk right now. I need to get treatment. I have two possible paths for getting it. Each has pitfalls. Each could fail. Both could fail. Yet, one might succeed. I'm not willing to risk that, just yet. I guess I'm not that brave. Perhaps later I can craft a way of telling this part of the story without risking others. I'll work on that.<br />
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For now, I'll simply say that the process is frustrating. It's been two and half years since my first diagnosis of Lyme Disease. It took two years to get that diagnosis. I continue to be amazed that everyone can so blithely tell me to be patient. One of the docs informed me that it can take months, once the application is submitted, to get approval from the insurance company for IvIg treatment. I am looking at the earliest possible beginning of treatment in July. That's if all goes well. Nothing has gone well so far.<br />
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Later in the week, I'll write about a test that had not been done for me before: the CD57. As with everything else related to Lyme, it is controversial.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com2tag:blogger.com,1999:blog-7506734243242824805.post-71593552903667722392010-03-29T10:03:00.000-07:002010-03-29T10:03:30.570-07:00Of Lice and LymeOne of the symptoms I live with on an ongoing basis is that the entire surface of my skin itches. I have had to work quite hard to stop scratching myself to bleeding. How this manifests on my head is that it always feels as if something is crawling on my scalp. I have a persistent case of The HeebieJeebies.<br />
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Recently, there was an outbreak of head lice in my daughter's school. She was one of the unlucky souls who ended up bringing them home. Given her waist length hair and her propensity for hugging, I guess we can't be too surprised.<br />
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This was our second round of battling off head lice. My head had never stopped itching from the first round and now I started obsessing about it. I was scratching my head all the time. I did all the treatments we did for her. I was constantly running the professional, metal, nit comb through my hair. As it would emerge from the dense forest on my head with white flecks almost every time, I was convinced that I had a horrible infestation.<br />
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If you've ever had to get rid of head lice, you know its a tedious thing. Put oil on the hair for hours, wash it out with special shampoo, put in special conditioner which you leave on for a while before rinsing out. Then the multi-hour inspection for nits. You have to wash all your bedding, clothing towels. You must spray all your upholstered furniture. For 10 days you must be vigilant and you have to repeat the big hair treatment process at the end.<br />
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We had barely recovered from our previous engagement with lice and I was now really certain that I had a bad case, so we decided to call in a professional to make sure we did all that we could as quickly as possible.<br />
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My daughter invented the title "Professional Lice Expert" (PLE). When our PLE arrived, I told her our history and let her know that after what I was seeing on the nit comb, I was absolutely sure that I was ground zero for apocalypse by lice. I was completely freaked out.<br />
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Four hours and $500 later, I learn that I did not have lice at all. I did have dry scalp. So did my daughter. Those white flakes on the nit comb were dead skin. A few oil treatments for my scalp and even that has been addressed. I was so relieved to realize that I was not ground zero. <br />
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I still have the HeebieJeebies. My head has that creepy crawly feeling, but I'm really resisting the urge to scratch. Its easier to do that when you have confirmation that nothing is actually there.<br />
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Though this is a minor thing compared to all the symptoms I live with, it does demonstrate the challenge of having neuropathies. Our nervous system is supposed to work like the lights on your dashboard: an indicator of some kind of activity. I've lost the ability to know if something is actually happening because my indicator is always lit up.<br />
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Funny, they can't figure out why check engine light in my car is always lit up, either!Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0tag:blogger.com,1999:blog-7506734243242824805.post-58781737523663493002010-03-25T10:47:00.000-07:002010-03-26T09:36:25.252-07:00Dear Mr.'s Stiller and LettermanI saw <a href="http://www.youtube.com/watch?v=6o4v1AILtbo&feature=related">Mr. Stiller's appearance on your show, Mr. Letterman</a>. It's all the buzz in the Lyme community.<br />
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Mr. Stiller reported that he had injured his knee in Africa and that it wasn't healing and they couldn't figure out why. After draining fluid, which they were surprised was not blood, they ran some tests and asked him if he'd ever had Lyme Disease.<br />
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He said that he had not, but he had been in New England last summer and his son had a bout of Lyme Disease.<br />
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You then went on to say, Mr. Stiller, that you would be relieved to have this disease because it was better than having arthroscopic surgery, since Lyme is easy to treat. Mr. Letterman you pointed out that it would be odd for someone in California to get Lyme because its an "East Coast" problem.<br />
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Oh boy.<br />
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First, I offer a prayer: Mr. Stiller, I sincerely hope that if you have Lyme disease, you are one of the lucky ones and a few weeks of antibiotics clears this up. No one could wish the horrors of a persistent Lyme infection on another human being. (Ok, well, maybe a dark little part of me wishes that some of those IDSA panel members would get it. I'll explain that later. Meanwhile, I'll continue to work on purging that demonic impulse.)<br />
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Some of us live with <a href="http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html">serious ongoing neurological damage</a>. Seizures, palsies, tremors, peripheral neuropathies, debilitating pains, brain fog, cognitive losses, profound fatigue, heart issues, breathing problems, digestive difficulties. The list goes on. This is in addition to the rheumatoid concerns of swollen joints which are so painful we can't use our limbs. Some get it in their spines and are relegated to spending their days in a fetal position unable to move. We lose the ability to speak without slurring, or sometimes, speak at all. Our vision is effected. And may no one on the face of the earth ever have to live with <a href="http://www.hyperacusis.net/hyperacusis/what+is+hyperacusis/default.asp">hyperacusis</a> - a growing sensitivity to sound which makes the entire world a heavy metal assault on your sensory system.<br />
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While you're recovering, I'd like to suggest that you and Mr. Letterman get a little bit more educated about the realities of Lyme Disease. Mr. Stiller, being a resident of California, you might acquaint yourself with one of the most prominent and active Lyme groups in the country: The <a href="http://www.lymedisease.org/">California Lyme Disease Association.</a> CALDA is a leading source of information and advocacy on the subject. There are some counties in California with an infection rate as high as that in Connecticut. Every state in the country now has Lyme disease. <br />
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Mr. Stiller, your son is so lucky that he was diagnosed and treated in a timely manner. The restrictive guidelines from the IDSA, whom I mentioned above, which are adhered to as intractable law by insurance companies, actually prevents many, many people from being diagnosed at all. <a href="http://lymedisease.org/lyme101/lyme_disease/lyme_diagnosis.html">Faulty testing and ignoring the clinical signs</a> if there is not a rash present (only about 35% of Lyme patients ever get a rash) are the hallmarks of the undiagnosed patient. Then, if you get diagnosed and you are offered the "Lyme medicine", you'd better pray that the infection is mild enough so that four weeks of antibiotics does the job completely. For a some it will. For many it won't. Whether your symptoms are gone or not, your medicine will be. And you can be much worse off for having begun treatment and having it stopped midstream.<br />
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Mr. Letterman, you would never remember me, but you used to dine in my friend's Chinese restaurant in New Canaan, CT regularly. I would show up at closing time to hang with my friends and you would be there eating by yourself. You came at closing so you could eat in peace. I left you in peace and had a great respect for your desire for some normalcy. We did meet once or twice briefly, as a social nicety.<br />
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I write you now, as I struggle to get my life back. It has been ravaged by Lyme. Due to <a href="http://www.columbia-lyme.org/patients/ld_lab_test.html">unreliable testing</a>, I went for years undiagnosed and the disease got into my brain and nervous system. While I can look normal on a good day, I am far from it. Though I have doctors who confirm that I have a chronic illness and that I have acquired auto-immune disorders, I cannot get treatment. The insurance companies rule the day and what little treatment I was getting was retroactively denied. All based on the work of the the IDSA panel. Your own state Attorney General (<a href="http://richardblumenthal.com/?gclid=CLXK_aWw1KACFclM5Qodi2uRug">now running for Senator</a>) has worked on this topic. He <a href="http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284">investigated</a> that group for anti-trust issues and found many conflicts of interest and that they had methodically dismissed any data or person which did not support their foregone conclusions about Lyme Disease. Don't be fooled by all the talk about an agreement with the Attorney General for a guidelines review process, either. They <a href="http://www.connecticutplus.com/cplus/information/news/News_1/IDSA-violates-Lyme-antitrust-settlement-agreement-with-Connecticut-Attorney-General73547354.shtml">breached that agreement</a> and left the whole thing in limbo. Still, their guidelines are used by insurance companies because it suits them to have any reason to deny having to provide services. Those of us who are sick become even more overwhelmed at the system we have to fight as we try to receive care.<br />
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I would ask now that you take a moment and look into the realities of Lyme Disease and offer us a little peace by helping spread awareness and correcting the misinformation you innocently disseminated. We struggle enough for affirmation and understanding. This segment on a very popular television show did not help. You could more than offset that with a little bit of effort.<br />
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May is Lyme Disease Awareness month. Perhaps you and Mr. Stiller could do a little research and find the time and motivation to create a public service announcement? Or do a segment on the show? We could provide lots of resources and names of knowledgeable people to interview. It would mean so much to so many, we would be eternally grateful.<br />
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Thank you for your consideration.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com4tag:blogger.com,1999:blog-7506734243242824805.post-62610122523563536152010-03-25T09:01:00.000-07:002010-03-25T09:01:16.057-07:00Phew.The doctor is back in the office. I have a new appointment for April 5.<br />
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Its good to be back on track.Una Spenserhttp://www.blogger.com/profile/15267349464421386669noreply@blogger.com0