about lymedisease.org SAVE THE DATES West Coast Conferences in October Volume 25 Number 2 We advocate nationally for quality accessible healthcare 2013 for patients with Lyme and other tick-borne diseases. We two important events are happening on the West Coast are committed to shaping health policy through advocacy, during early october. legal and ethical analysis, education, physician training and medical research. Lyme patients to protest IDSA We communicate our message in print and online. in San Francisco October 5 We connect and educate the patient community through the infectious diseases society of america networking and state online support groups. We take the is having its annual conference in San Francisco, and LymeDisease.org is pulse of the Lyme community through patient surveys. going to protest on October 5. Will you join us? We analyze and archive information in our quarterly journal, The Lyme Times, and maintain an educational The IDSA is the private group of doctors whose controversial Joshua Verhoeven, the Netherlands the Verhoeven, Joshua website at lymedisease.org. We publish regularly in peer- Lyme treatment guidelines, endorsed by the U.S. Centers for Three little girls join the Worldwide Lyme Protest in Den Haag, The Netherlands. reviewed medical and health policy publications. Disease Control and Prevention, make it difficult for Lyme online support groups patients to get properly diagnosed and treated. The guidelines define the disease so narrowly that even many early acute Participate in education and advocacy activities in your cases are left out. Furthermore, the IDSA insists that chronic, NEWS & EVENTS 5 | OPINION state. Learn about local resources and receive technical long-term Lyme doesn’t exist. (Insurance companies love this. 7 | NEWSMAKER FEATURES Lyme label limits understand- support for your efforts. Exchange information and pa- Why pay to treat a disease that isn’t there?) Kerry Clark, PhD ing of worldwide borreliosis 16 | Worldwide Lyme Protest tient support conveniently from your home. To find your Groundbreaking research epidemic The IDSA is meeting for five days at San Francisco’s Moscone on lone star ticks may solve Activists around the globe unite to demand by Alan MacDonald own online state-based group, go to: diagnostic mysteries in the Convention Center. Join us to protest on Saturday, October 5, effective diagnosis and treatment health.groups.yahoo.com/group/(yourstatename)lyme. Southeast 5 | OPINION on Howard Street between 3rd and 4th. For more details, go to by Liz Schmitz by Lisa Hilton CDC revises their official case Website www.lymedisease.org. 20 | Yolanda Foster Lends Celebrity to the Cause count although questions 10 | SPOTLIGHT ON THE NEWS remain Visit our extensive educational website at Beverly Hills Housewife makes her personal Rash of media coverage spurs by Dorothy Kupcha Leland lymedisease.org. Discover the basics at Lyme 101, read ILADS in San Diego October 18-20 public interest in controversy experience painfully public news and analysis, and check the events calendar. Sign up Lymewalk & Rally Oct. 19 by Pamela Cocks by R. Tim Haley 6 | OPINION Writing off Lyme as “all for our free email newsletter. 12 | HIGHLIGHTS FROM 22 | Lyme Leaders Confront the CDC in your head” invalidates the international lyme and associated diseases soci- Facebook THE BLOGS Centers for Disease Control and Prevention invite dialogue legitimate disease ety - the doctors who recognize , know how to by Jennifer Crystal Keep on top of developing news and share your own Lyme Policy Wonk and receive criticism from Lyme leadership treat it, and are helping our families get better - is having its Entrenched Researchers by Phyllis Mervine experiences and opinions by joining the conversation on annual conference in San Diego. For conference specifics, visit Produce Dead-End Science 30 | ASK THE EXPERT our Facebook page: facebook.com/lymedisease.org. www.ilads.org. by Lorraine Johnson 26 | LymeDisease.org Founder Speaks Truth to Power Ten steps to feeling better on less than $32 a month twitter 14 | ADVOCATES IN ACTION After decades of disappointment, pioneering advocate by Jerry Simons On Saturday, Oct. 19, in conjunction with the conference, the questions CDC trustworthiness Receive our tweets on your phone or computer. Maine passes bill despite San Diego Lyme Support Group and LymeDisease.org will vigorous opposition by Phyllis Mervine DEPARTMENTS Follow us at: https://twitter.com/Lymenews sponsor a Lymewalk & Rally at the adjacent park. For further by Constance “Happy” Dickey 13| PATIENT VOICES Join the effort details and a map, visit www.lymedisease.org. Lyme in “Tick” State Park COLUMNS by Stephanie Dorris Participate in the Lyme community and make our 2 | EDITORIAL collective voices even stronger. Visit lymedisease.org or A number of ILADS doctors will address the rally. Guest CDC Boosts Lyme Count 15 | LEGISLATION speakers include Dr. Richard Horowitz, who will bring copies to 300,000 Patients urged to advocate complete the membership form in this issue. of his new book, Why Can’t I Get Better? Solving the Mystery by Phyllis Mervine for federal bills of Lyme and Chronic Disease. You’ll have an opportunity to by Sharon Hawkes 3 | OPINION FRONT COVER: Despite struggling with only 60% of see Dr. Horowitz in person, and purchase a signed copy. LDA president challenges 28 | TBD BASICS her normal , Beverly Hills Housewives star Yolanda CDC persistent denial Common co-infections compli- cate diagnosis and treatment Foster maintains her demanding professional schedule and Stay up to date on these events and more at our website: of chronic Lyme LymeDisease.org. by Pat Smith World-renowned and much-loved pediatrician Charles Ray Jones addresses by Doug Fearn adds her celebrity status to help Lyme patients everywhere. the NYC Worldwide Lyme Protest. To help him pay for the practice monitor Photo of Yoland Foster by Jim Jordan ordered by the CT Medical Board, supporters have opened a fundraising website for him at indiegogo.com.

A2 The TheLyme Lyme Times Times Volume 25 Number 2 The Lyme Times about lymedisease.org SAVE THE DATES West Coast Conferences in October Volume 25 Number 2 We advocate nationally for quality accessible healthcare 2013 for patients with Lyme and other tick-borne diseases. We two important events are happening on the West Coast are committed to shaping health policy through advocacy, during early october. legal and ethical analysis, education, physician training and medical research. Lyme patients to protest IDSA We communicate our message in print and online. in San Francisco October 5 We connect and educate the patient community through the infectious diseases society of america networking and state online support groups. We take the is having its annual conference in San Francisco, and LymeDisease.org is pulse of the Lyme community through patient surveys. going to protest on October 5. Will you join us? We analyze and archive information in our quarterly journal, The Lyme Times, and maintain an educational The IDSA is the private group of doctors whose controversial Joshua Verhoeven, the Netherlands the Verhoeven, Joshua website at lymedisease.org. We publish regularly in peer- Lyme treatment guidelines, endorsed by the U.S. Centers for Three little girls join the Worldwide Lyme Protest in Den Haag, The Netherlands. reviewed medical and health policy publications. Disease Control and Prevention, make it difficult for Lyme online support groups patients to get properly diagnosed and treated. The guidelines define the disease so narrowly that even many early acute Participate in education and advocacy activities in your cases are left out. Furthermore, the IDSA insists that chronic, NEWS & EVENTS 5 | OPINION state. Learn about local resources and receive technical long-term Lyme doesn’t exist. (Insurance companies love this. 7 | NEWSMAKER FEATURES Lyme label limits understand- support for your efforts. Exchange information and pa- Why pay to treat a disease that isn’t there?) Kerry Clark, PhD ing of worldwide borreliosis 16 | Worldwide Lyme Protest tient support conveniently from your home. To find your Groundbreaking research epidemic The IDSA is meeting for five days at San Francisco’s Moscone on lone star ticks may solve Activists around the globe unite to demand by Alan MacDonald own online state-based group, go to: diagnostic mysteries in the Convention Center. Join us to protest on Saturday, October 5, effective diagnosis and treatment health.groups.yahoo.com/group/(yourstatename)lyme. Southeast 5 | OPINION on Howard Street between 3rd and 4th. For more details, go to by Liz Schmitz by Lisa Hilton CDC revises their official case Website www.lymedisease.org. 20 | Yolanda Foster Lends Celebrity to the Cause count although questions 10 | SPOTLIGHT ON THE NEWS remain Visit our extensive educational website at Beverly Hills Housewife makes her personal Rash of media coverage spurs by Dorothy Kupcha Leland lymedisease.org. Discover the basics at Lyme 101, read ILADS in San Diego October 18-20 public interest in controversy experience painfully public news and analysis, and check the events calendar. Sign up Lymewalk & Rally Oct. 19 by Pamela Cocks by R. Tim Haley 6 | OPINION Writing off Lyme as “all for our free email newsletter. 12 | HIGHLIGHTS FROM 22 | Lyme Leaders Confront the CDC in your head” invalidates the international lyme and associated diseases soci- Facebook THE BLOGS Centers for Disease Control and Prevention invite dialogue legitimate disease ety - the doctors who recognize Lyme disease, know how to by Jennifer Crystal Keep on top of developing news and share your own Lyme Policy Wonk and receive criticism from Lyme leadership treat it, and are helping our families get better - is having its Entrenched Researchers by Phyllis Mervine experiences and opinions by joining the conversation on annual conference in San Diego. For conference specifics, visit Produce Dead-End Science 30 | ASK THE EXPERT our Facebook page: facebook.com/lymedisease.org. www.ilads.org. by Lorraine Johnson 26 | LymeDisease.org Founder Speaks Truth to Power Ten steps to feeling better on less than $32 a month After decades of disappointment, pioneering advocate twitter 14 | ADVOCATES IN ACTION by Jerry Simons On Saturday, Oct. 19, in conjunction with the conference, the questions CDC trustworthiness Receive our tweets on your phone or computer. Maine passes bill despite San Diego Lyme Support Group and LymeDisease.org will vigorous opposition by Phyllis Mervine DEPARTMENTS Follow us at: facebook.com/lymedisease.org. sponsor a Lymewalk & Rally at the adjacent park. For further by Constance “Happy” Dickey 13| PATIENT VOICES Join the effort details and a map, visit www.lymedisease.org. Lyme in “Tick” State Park COLUMNS by Stephanie Dorris Participate in the Lyme community and make our 2 | EDITORIAL collective voices even stronger. Visit lymedisease.org or A number of ILADS doctors will address the rally. Guest CDC Boosts Lyme Count 15 | LEGISLATION speakers include Dr. Richard Horowitz, who will bring copies to 300,000 Patients urged to advocate complete the membership form in this issue. of his new book, Why Can’t I Get Better? Solving the Mystery by Phyllis Mervine for federal bills of Lyme and Chronic Disease. You’ll have an opportunity to by Sharon Hawkes 3 | OPINION FRONT COVER: Despite struggling with only 60% of see Dr. Horowitz in person, and purchase a signed copy. LDA president challenges 28 | TBD BASICS her normal energy, Beverly Hills Housewives star Yolanda CDC persistent denial Common co-infections compli- cate diagnosis and treatment Foster maintains her demanding professional schedule and Stay up to date on these events and more at our website: of chronic Lyme LymeDisease.org. by Pat Smith World-renowned and much-loved pediatrician Charles Ray Jones addresses by Doug Fearn adds her celebrity status to help Lyme patients everywhere. the NYC Worldwide Lyme Protest. To help him pay for the practice monitor Photo of Yoland Foster by Jim Jordan ordered by the CT Medical Board, supporters have opened a fundraising website for him at indiegogo.com.

The Lyme Times VolumeVolume 25 25Number Number 2 2 The Lyme Times1 EDITORIAL www.lymedisease.org VOlUme 25, NUmBer 2 CDC Boosts Lyme Count to 300K Published by LymeDisease.org Library of Congress No. 92-595999 By Phyllis Mervine, Editor-in-Chief PrODUctiON staff Breaking news as we go to press! The CDC has just editor in chief: upped its official count of Lyme disease cases in the Phyllis Mervine, EdM U.S. to 300,000, ten times the previous number, and managing editor: the media have been having a field day. What does Pamela Cocks, MPH, MLS it mean? See page 5 for “Touched by Lyme” blogger Dorothy Leland’s take on this startling development. contributing editor: Why did they do it? A cynic might believe they are R. Timothy Haley, MA just trying to soften up the market for the new Lyme mental Health editor: vaccine, after the debacle with the old one. But the Sandy Berenbaum, LCSW, BCD overall effect might be good for advocacy. Online editor: Dorothy Kupcha Leland Our cover story features a special person who wants sponsorship manager: Haider Ajina to use her celebrity to make a difference. It can’t be easy to keep working then you’re operating at about 60%, as Yolanda Foster told Production & Design: Jay Gamel us she was. But she knows that celebrity can bring attention and, better yet, cred- Graphic Design & illustrations: ibility to our cause, so she is continuing to pursue her career, at some personal cost, Michele D. Lott I suspect. For her interview with The Lyme Times, she was willing to call us from membership correspondence: Italy in the midst of her busy modeling and acting schedule. She also attended the LymeDisease.org Worldwide Lyme Protest in Los Angeles. We are fortunate to have this talented and P.O. Box 1352 Chico, CA 95927 determined lady on our side. Yolanda’s story begins on page 20. Researching our story on the Worldwide Lyme Protest was an eye-opener. On (U.S. funds only) May 10 and 11 patients turned out in countries around the world: the U.S., Neth- editorial correspondence: erlands, England, Germany, France, Australia and many others. I don’t know how P.O. Box 1423, Ukiah CA 95482 they accomplished all they did, but some managed to have public buildings and [email protected] even Niagara Falls lit up green. Thousands turned out for fund- and awareness- Original articles preferred. raising walks. People tied green ribbons on trees, on mailboxes. Many more people lymeDisease.org were present in spirit and shared photos on Facebook and other websites. There chief executive Officer: were many compelling signs and posters. My personal favorite: “SHHH!! The CDC is SLEEPING.” Lisa Hilton, U.S. protest coordinator, tells how it all came about, Lorraine Johnson, JD, MBA starting on page 16. chairman: Phyllis Mervine, EdM Speaking of the CDC ... the Centers for Disease Control may have been re- VP of education & Outreach: sponding to the pressure of slurs on its reputation, or just trying to disarm the op- Dorothy Kupcha Leland position when they invited a select group of advocates to a face-to-face meeting in senior Vice President and secretary: Fort Collins, Colorado, in June. If we can believe their words, they hope to build Barbara Barsocchini, MBA bridges with the Lyme community. Did they succeed? Read our feature story be- ginning on page 22 and place your bet on the outcome. treasurer: Mitch Hoggard This year LymeDisease.org enters our 25th year of advocacy, and we are planning staff: JoAnne Vidal to feature this special anniversary in the next issue of The Lyme Times. If you have Disclaimer been with us for a while, or even if you haven’t, please let us know what your asso- The articles in The Lyme Times are not intended ciation with our advocacy organization has meant to you on your Lyme journey. as legal or medical advice regarding the treat- ment of any symptoms or disease. Medical When I began, I fully believed my job would be over by now, but instead, it has advice of your personal physician should be ob- only gotten more intense. Luckily, we have learned some lessons over the years. tained before pursuing any course of treatment. Many new and capable people are involved, and we’ve got all of you at our back. So The Lyme Times makes no express or implied warranties as to the efficacy or safety of any thank you for sticking with us. If you would like to contribute your reflections on treatment in its articles or letters and disclaims our 25th, please get in touch with me at [email protected], and please send all liability for any use of any such treatment. Opinions expressed in articles are those of the us any photos you think might have historic value authors alone and are not necessarily those of The Lyme Times or LymeDisease.org. Publication of any portion of The Lyme Times without written permission is prohibited. Please contact the Editor in Chief if you wish to duplicate articles. © Copyright 2013 LymeDisease.org 2 The Lyme Times OPINION LDA President Rebuts CDC’s Arguments Email exchange highlights persistent Lyme disease dilemmas By Pat Smith of privileges. Labs were continuously in- symptoms exist. vestigated and attempted to be shut down. One fleeting admission in one Editor’s Note: Pat Smith, president of Research has been kept out of medical newspaper cannot wipe the slate clean of the Lyme Disease Association (LDA), an- journals, research funds denied, and the long-term abuses cited in the above swered statements by Lyle Petersen (LP), opinions trashed in prestigious medical paragraph. Right now, it is considered director of the CDC’s Division of Vector- journals, often without the ability to lip service from an agency that has been Borne Diseases, in an exchange of emails. respond, even with 600 words [Ed. Note: perceived over a couple of decades as not Petersen’s comments are in italics. Petersen had complained that his response listening to or taking seriously patient First, I want to thank Betty Maloney to The Poughkeepsie Journal articles was concerns. Repetition of that new position for her comprehensive analysis of the limited to 600 words]. and more open discussion will help that treatment trials including their flaws in perception change. Additionally, as you design or conclusions. The only comment know, persistent symptoms and persistent I would make is that chronic patients have It is not practical infection are not the same. been denied anything but palliative care LP: Third, I mentioned that there is no based upon those particular study con- or necessary for all widely accepted definition for chronic Lyme clusions and the IDSA Guidelines, the laboratory tests to be disease. If there is one with some degree of latter which appear almost punitive in specificity, I have not seen it. nature. FDA-approved for clinical It is difficult to develop a widely -ac Second, Lyle [Petersen], I am not sure implementation as long cepted definition of something people in why anyone would be surprised at the re- government and mainstream medicine actions to your letter [to The Poughkeepsie as other standards and deny exists. Researchers applying for Journal]. regulations are met. government grants who don’t believe in LP: At best, I was called ignorant; at worst chronic Lyme, however, sometimes use a murderer. This just highlights the need to Those who have wanted to associate that term in applying for and receiving bring this discussion to some reasonable with LDA or the Lyme community have grants for research. terms, as you point out in your email. continued to be pressured by their peers ILADS attempted to define it in their Twenty-five years of information sup- into submission. They have been told they Guidelines. They close the definition pression will not disappear in a second, would not receive research monies or be section with one sentence, which sadly, nor should it. Violations of trust by en- able to publish if they cooperated with us. nine years after publication, was not tities, both governmental and non-gov- Several years ago at a meeting in Europe, allowed to happen in an unfettered climate ernmental, charged with helping people one researcher was told publicly that his for clinicians and researchers. but instead abandoning them to their own work (which always has been and con- LP: Fourth, the four double-blinded pla- devices, are not easily rectified, forgiven or tinues to be impeccable science pub- cebo-controlled trials did not consistently forgotten. lished in the best journals) should not be show lasting benefit for long-term anti- For years we have tried to have rea- discussed at that meeting because LDA biotic therapy. I also mentioned that this sonable discourse with those who control funded it ‑ he should not accept money treatment is not without risk, which I think disease definitions, to little avail. Many of from such an organization. Never mind we would all agree on. us offered to work with those entities, to that the organization that the complainer This issue was already discussed at be ignored and told at best to butt out, that represented had members who had no length in this group. we were ignorant or did not understand problem getting tens of millions of dollars LP: Fifth, I mentioned that some labo- the science, that we were gullible and from government for the “same old, same ratory tests for Lyme disease have not been being taken for a ride by doctors looking old” Lyme research annually, the same or- validated by an external source such as the to make a quick buck, that were bilking ganization that brings in millions of dollars FDA. Many of these labs say they are CLIA- patients, had vested interests (amazing annually and has a public agenda to kill all certified, but CLIA does not do clinical vali- how helping patients who have been dis- patient-initiated Lyme legislation. dation. carded by mainstream medicine and gov- LP: Second, I acknowledged right up front It is not practical or necessary for all ernment can be spun). And most impor- that some people have long-term symptoms laboratory tests to be FDA-approved for tantly, doctors, researchers, other health after standard therapy. So I’m somewhat clinical implementation as long as other care providers, who disagreed with those baffled about the patient’s comment copied standards and regulations are met. It seems entities, were brought up on charges, fired below implying that we deny that persistent from hospitals or threatened with removal Continued on next page

Volume 25 Number 2 3 that the objective of raising the issue of cluding me, have spoken to prominent tomatic and got the shot. At the time, FDA approval, however, is to make readers researchers and clinicians who privately there was much discussion about people and listeners believe that tests have re- have said that the trials (going back who developed Lyme “from” the vaccine, ceived little scrutiny, have not undergone before Fallon) had no real generalizability a trigger perhaps, and oh so many people any type of meaningful validation or ver- outside the scope of the specific patients in forced to take it due to their jobs – people ification, and are, therefore, unreliable if the trials. Sadly, almost without fail, such who did not want to take it and who were not outright fraudulent. The laboratories researchers would swear you to secrecy crippled after doing so. which run such “Lyme tests” are portrayed out of fear of losing access to funding The Air Force invited me to talk about as being run by unscrupulous charlatans sources. Yet these same trials are cited the vaccine to their men and women, and out to bilk gullible patients via phony sci- over and over and over by the medical I told them I was the wrong person, since entific tests. I believe that it is such inac- establishment with the justification that I could not endorse it. They said that was curate – but intentional – generalities and they are all that exist. The clinical envi- exactly why they wanted me to speak. portrayals that lack honesty. ronment is also one in which individuals They were tired of their men being guinea I am not a testing expert, but I am are told that Lyme is almost non-existent pigs for government vaccines. I presented confident that it is generally true that in non-endemic areas, and if a physician as objectively as I could the research both the tests and the laboratories are com- is foolish enough to order a test against before the vaccine, (e.g., Callister, Shell, pliant with rigorous scientific and regu- the advice of experts, then any positive hamster study), and problems we heard latory standards. I would be interested must be a false positive. later from patients and physicians. This sit- to see some of the other FDA-approved uation is another example of what happens labs survive the scrutiny that the CLIA- The IDSA guidelines rely clinically in a field not being known, un- approved labs performing Lyme testing derstood or perhaps ignored by those who are subject to. I believe honesty dictates on a small number of are responsible for public safety. a more extensive explanation of concerns underpowered clinical LP: Last, I indicated that there is no regarding testing, including that most defined treatment regimen for lasting tests are at a minimum scientifically ac- trials to make broad symptoms of Lyme disease, which raises the curate, and that the tests and labs have generalizations that are question of how to define treatment success. undergone extensive scrutiny. If you are looking to “open the Again, not being a testing expert, I un- not supported by the cookbook to p.12 for exact treatment derstand that you raise valid issues con- design and execution of regimens for Lyme,” you will not find cerning “clinical validation” – issues it, of course. Strain variations, perhaps which are both large and nuanced at the the trials they cite. even other vectors we are not acknowl- same time. However, I question what edging or are unaware of, human genetic would be a “rational approach,” for intro- variations, other TBDs, immune system ducing Lyme tests into the clinical labo- So I ask you: What is a “rational ap- variations, all contribute to a difficult ratory. The clinical environment has been proach” to Lyme disease testing in this treatment picture that our clinicians have one in which Lyme has been defined by “clinical environment?” At a minimum, struggled with, on their own under fire, the experts to exist only in a very small, I believe that a conscientious person for 25+ years to provide help for the tens well-defined box; where the IDSA has should not allow laboratories and scien- of thousands of Lyme patients abandoned said (2008 letter to Congress) that post- tifically valid tests to be misrepresented by mainstream medicine. Coming from treatment persistence is microbiolog- and ridiculed. an education perspective, I want to say ically implausible – regardless of issues Finally, we do know that FDA, while it that even public education with all its such as how long the individual had the generally adds significant value to public flaws recognizes that not all students are disease prior to treatment. The clinical health protections, is also subject to inap- created equal, and all cannot follow the environment is one in which treatment propriate influences by vested interests. A same learning plan due to some serious guidelines certainly seem to ignore sig- case in point is the FDA-LymeRx debacle variables. Those students’ needs are nificant scientific evidence for how per- where we saw a vaccine that the FDA ap- provided for in programs with different sistence may occur; the IDSA guidelines proved with the most “provisos” of any teaching and learning strategies, and their rely on a small number of underpowered vaccine on the market. We saw the ap- learning has different measurements for clinical trials to make broad general- proval process for what it was, viz. a caving success. izations that are not supported by the to vested interests over public safety. The I am glad to have the opportunity to design and execution of the trials they vaccine was only 79% effective. It had present these viewpoints to individuals cite. Look at the specific quality issues not even been fully vetted for the three- who have the ability not only to see the with the trials and their generalizability shot regimen. The company itself said need for changes being made, but also noted by Betty Maloney, MD. they did not know what would happen to have the power to effect those changes. Furthermore, many advocates, in- people who had Lyme, but were asymp-

4 The Lyme Times OPINION Case Numbers Skyrocket in New CDC Estimate CDC methodology for counting 300,000 cases remains a mystery By Dorothy Kupcha Leland diagnosed by doctors who are covered by insurance but eventually diagnosed by doctors who are not covered by insurance. Thus, sig- The U.S. Centers for Disease Control and Prevention grabbed nificant numbers of Lyme cases will never be reflected in insurance national headlines on August 19, 2013, by releasing a revised es- claim information. timate of how many people in the U.S. contract Lyme disease an- The lab survey looked at data from several clinical labs. We’ve nually. Overnight, the figure jumped from 30,000 to 300,000. asked the CDC for specifics. In the meantime, according to a CDC Actually, the CDC merely confirmed what Lyme advocates have spokesman, we do know this survey did not include data from long maintained—that the agency’s strict surveillance methods IGeneX Laboratory (heavily used by Lyme-literate doctors). leave out far too many cases, making Lyme disease seem much less The final survey included a few questions about Lyme disease prevalent than it actually is. in a general questionnaire that covered a wide variety of other In announcing the revised number, CDC spokesman Paul Mead, health topics. MD, said, “We know that routine surveillance only gives us part of The methodology from these surveys suggests that the real the picture, and that the true number of illnesses is much greater.” number of Lyme cases is probably significantly higher than 300,000. The CDC says it based the new number on findings from three Furthermore, the CDC’s estimate fails to address other tick- studies. The first one looked at medical claims information for borne diseases, such as , Borrelia miyamotoi, and the about 22 million insured people over a period of six years; the Powassan virus, serious illnesses spread by the same ticks that second surveyed clinical laboratories; and the third analyzed self- carry Lyme. reported Lyme disease cases from a survey of the general public. LymeDisease.org agrees with the CDC that Lyme disease is a As of this writing, the CDC has not released details of any of “tremendous public health problem.” We hope this new estimated these surveys, which raises many questions. For instance, because number is merely one step in a long list of actions needed to of widespread adherence to the IDSA Lyme diagnostic and combat it. treatment guidelines, many cases of Lyme disease are initially mis- Borreliosis Epidemic Goes Global By Alan MacDonald, MD Military service personnel in Germany are vulnerable to Eu- ropean borreliosis, especially when their tour of duty involves ma- All of our disagreements will “go away” if we agree to divorce neuvers in the Black Forest region of the German Federal Republic. Lyme from other European-type burgdorferi group Borrelia in- Travel to resort areas of Mexico, Central America, and Brazil may fections. result in “European-type borreliosis infections” due to endemic “Lyme” in its divorced domains is codified, narrow in its clinical areas of Garinii type borreliosis in these geographies. Borrelia in- profile, hard to get, easy to treat, managed by the CDC criteria for fections in Australia and China are different from U.S. Lyme. case definition, and geographically limited in the U.S. to the areas Sixty percent of metropolitan New York and perhaps a sub- in the northeast, Minnesota and Wisconsin. stantial fraction of Greater Boston Metro blood centers are sup- “Borreliosis” in its divorced domains is wide in its clinical profiles, ported by imported blood donations from — the European com- easy to get, difficult to treat, not managed by CDC criteria for case munity. Germany alone had one million government-reimbursed definition, and a worldwide public health problem. Dimensions medical treatments for its citizens in 2012. of Garinii borreliosis, Afzelii borreliosis, and related European-type The divorce of Borrelia infections from the simpler short list borrelioses of the burgdorferi sensu lato group of microbes are as of U.S. Lyme infections would allow the medical community to remarkable in their complexities as is the US. burgdorferi sensu tolerate two tracks of diagnosis and treatment. Render unto bor- stricto borreliosis (USA Lyme agent B31 Shelter Island, NY, strain) reliosis that which is borreliosis, including the newly recognized is in its simplicities. miyamotoi form of borreliosis, spread by Lyme ticks – Ixodes scap- European burgdorferi strains (sensu lato) may produce stroke, ularis – and render unto Lyme a simpler (and in the words of Dr. death verified by autopsy studies, dilated cardiomyopathy, , “often self-healing”) medical condition. carditis cases treated with heart transplantation, malignant lym- Divorce is well past due for the entities “Lyme” and “other burg- phomas of the skin, and a host of skin conditions which are never dorferi group human borreliosis” conditions – worldwide. diagnosed in the U.S.; the premier being acrodermatitis chronica Alimony is neither requested nor required in such a “no contest” atrophicans, from which squamous cancers and malignant lym- parting of the ways. phomas may emerge. See more at lymedisease.org/news/lyme_disease_views/guest- We are a global society. European borreliosis infections may be blog-is-it-time-for-a-lyme-divorce.html#sthash.EGDx3otq.dpuf difficult to diagnose when patients return to the U.S.

Volume 25 Number 2 5 OPINION Lyme Patients Blamed for Their Own Illness Healthcare professionals all too anxious to write off Lyme as “all-in-your-head” By Jennifer Crystal anxiety are often effects of tick-borne illness, of depression, whether that depression was but they are not the cause. categorized as chemical, situational or con- Almost every Lyme Anyone who is sick for a long time, trived. And as it turned out, I was right. patient I’ve ever met sometimes with worsening symptoms and As soon as I was properly diagnosed and was confronted, at some no end in sight, is bound to get depressed treated for tick-borne diseases—as soon point in their quest for about the situation. He/she is bound to as I started to break free of the restraints of diagnosis, with the “all- get anxious. Being sidelined from a happy, convalescence, I started to become my old, in-your-head” write-off. productive, active life to a debilitating ex- happy self again—not because chemical de- The first doctors and istence isn’t just enough to make someone pression had been cured, but because the nurses I encountered mad—it should make someone mad. factors causing situational depression had when I got sick back in 1997 quickly moved to this condescending, all-encompassing “diagnosis” when routine lab work showed nothing awry. Instead of looking deeper, doing more specialized tests, or asking me more specific questions, these practitioners whispered, “Maybe you should see someone in counseling about these problems.” Because these doctors and nurses couldn’t solve the problem themselves, they turned it back on me, insinuating ugly labels like “hy- pochondriac” and “hysterical.” I was told to learn to better manage anxiety and stress. The problem with this type of write-off is two-fold: it invalidates the patient narrative of physical disease—which can, at times, mirror or accompany psychological illness; and it invalidates legitimate depression and anxiety as contrived conditions that do not deserve recognition or care from doctors Michele Lott Designs Michele Lott treating physical ailments. Depression is not a diagnosis of elimi- People who accept this lifeless life as their slipped away. nation. It is not something that doctors fate should see someone in counseling. Diagnosis of both depression and tick- should land on as the solution when no But never ever should they be convinced borne illness can be tricky. Neither have other answer can be immediately found. that their situational depression and wit’s perfect tests. But doctors do have the ability Depression is a chemical imbalance in the end anxiety is the root of their demise. It to ask questions that can differentiate brain, and proper medication can ame- is merely an ugly, snarled off-shoot that, physical and psychological illness; they liorate, if not cure, symptoms for people le- when guided appropriately, can actually have the clinical capacity to work with pa- gitimately suffering from it. fuel a patient’s will to get better. tients to find root causes of illness; and they Tick-borne disease is also a legitimate Moreover, these patients should not be have the training and expertise to recognize illness. It is caused by the bite of an in- convinced they have a major depressive the difference between cause and effect. If fected tick, not by a person’s presumed in- disorder, a true chemical imbalance, causing both doctors and patients explore this re- ability to handle stress or a propensity for their Lyme symptoms. Some symptoms of lationship, people suffering from illness moodiness. Tick-borne bacterial and par- Lyme and depression do overlap: a certain of any kind can hope for easier and more asitic infections cannot be treated with anti- level of fatigue, moodiness, sleep distur- accurate diagnoses. Doctors will become depressants. Depression and anxiety are bances. Other symptoms of Lyme have no more accountable to validating all types of often effects of tick-borne illness, but they correlation to depression. I never believed illnesses, the exterior or interior factors that are not the cause. that my fevers, hives, burning extremities, may cause them, and the treatments that That bears repeating.Depression and joint pain and muscle spasms were a result can help eradicate them.

6 The Lyme Times NEWSMAKER – KERRY CLARK, PhD Researcher Debunks Dogma About Lone Star Ticks Clark Lyme spirochetes in Southeastern ticks and patients By Liz Schmitz are designed to detect just one strain of star ticks. Fewer than 2% collected were this species – B31. Using Clark’s findings, black-legged "deer" ticks. Groundbreaking research from the Uni- testing procedures may now be modified A similar study in 2001 on Gibson Island, versity of North Florida's Kerry Clark, PhD, to help diagnose Lyme infections possibly Maryland, showed that 95% of ticks col- and colleagues stands to change current caused by Borrelia americana and Borrelia lected there, too, were the aggressive lone thinking about Lyme disease in much of the andersonii. star species. Although many island res- United States. The study, “Lyme Borreliosis idents claimed they had developed Lyme in Human Patients in Florida and Georgia” Lone star ticks & Lyme disease disease, their complaints were dismissed was published in the May issue of The In- Lyme disease bacteria (Borrelia burg- based upon the low prevalence of black- ternational Journal of Medical Sciences. It dorferi) have been documented in lone star legged ticks. For years across the South, could explain why so many people claim ticks in several published studies. This tick thousands of patients have reported con- they have contracted Lyme disease in areas species is highly aggressive, biting humans tracting Lyme disease, but again, based on where there is an absence or low prevalence frequently. Lone star ticks are the most tick species, their cases have been denied, rate of infected black-legged “deer” ticks. missed and unreported. The research team's findings may also help to solve other mysteries, including the un- Ed Masters fought with CDC reliability of Lyme disease testing as well as Though many researchers have con- the condition called Southern Tick-Asso- tributed important evidence suggesting ciated Rash Illness (STARI). an association between lone star ticks and In the study both the lone star ticks and Lyme disease (Sculze, Bowen, Rawlings, the patients who removed them tested Feir, Felz, etc.), the late Dr. Ed Masters doc- positive for the same species of bacteria rec- umented the most cases. Masters worked

ognized to cause Lyme disease in the north- CDC, James Gathany by Photo tirelessly for years to get Lyme Borreliosis eastern U.S. - sensu This female lone star tick, Amblyomma recognized in the South. Many of his pa- stricto (Bbss). americanum is found in the Southeastern and tients tested positive for Lyme disease and Believed by many to be incapable of Mid-Atlantic United States. It is a vector of several had symptoms identical to patients suf- transmitting Lyme disease, the new data zoonotic diseases including human monocytic fering in the Northeast. Spirochetes, which strongly implicates lone star ticks as a cause ehrlichiosis and Rocky Mountain spotted fever. evidence indicated were Lyme Borrelia, of “regular Lyme disease." Clark and his were seen in his patients' erythema migrans team tested lone star ticks, Amblyomma tissue samples. But the Centers for Disease americanum, and the symptomatic patients commonly found species biting humans Control (CDC) refused to acknowledge who removed them. Both the ticks and the in the southeastern U.S., but have been re- much of Masters' data, reportedly even patients tested positive for Bbss, exactly the ported for decades, too, by doctors and positive test results obtained by the agency same species of bacteria already known to Lyme disease patients in the Northeast. itself. Masters' courageous and contentious cause Lyme disease in North America. A 1908 U.S. Department of Agriculture battle with the CDC is described in Chapter New Bb species reported report documented lone star ticks in Mas- 28 of Pamela Weintraub’s book, Cure sachusetts, New York, Pennsylvania, New Unknown: Inside the Lyme Epidemic. Dr. Clark’s team also found two species of Jersey, and Michigan as well as in various Instead of Lyme disease, CDC officials Lyme disease bacteria, previously unknown states throughout the southern U.S. The called the illness spread by lone star ticks to infect humans, in symptomatic patients species is now reported almost halfway “Masters' Disease,” now known as STARI. living in the southeastern U.S. The team across the nation - from the Deep South to It was once believed that the relapsing used molecular methods to detect Borrelia as far north as Canada. fever spirochete, Borrelia lonestari, was the americana and Borrelia andersonii. These In 1984, New Jersey researchers were the culprit, but after research failed to detect it Lyme bacterial species have been docu- first to report that lone star ticks may be a in STARI patients, that idea was discarded mented in nature, but never in humans second vector of Lyme disease (Schulze, et some years ago. until now. The Lyme disease tests currently al.). They documented two human cases CDC officials continue to insist that lone available to medical providers and patients and reported Lyme spirochetes in lone star star ticks cannot transmit Lyme disease are not designed to detect these species. ticks in Monmouth County, New Jersey. In despite conflicting evidence, including their Only the single species, Bbss, is cur- that same county from 1978-1982, 96% of own. They present an incomplete, biased rently recognized to cause Lyme disease in the ticks collected during May, June and reference list to support their stance, and North America. Typical testing methods July – when Lyme cases peaked – were lone and interpretation criteria used in the U.S. Continued on next page

Volume 25 Number 2 7 argue that lone star tick saliva kills Lyme Borrelia, forgetting to mention that it fails to eliminate all of the spirochetes. (In one study, 13% were still viable.) It's often reported that STARI is a mild illness with no serious after-effects, yet no long-term, broad-scale studies prove the disease is mild, and thousands of an- ecdotal reports suggest otherwise. Ig- noring Masters' clashing data, some CDC officials have dangerously suggested STARI may not even be infectious, may not need to be treated, and may only be a hypersensitivity reaction to a tick bite. The term, "STARI" has likely obstructed the diagnosis, treatment and reporting of southern Lyme disease cases for years. What we don't know is this: How many southerners may actually be infected with Lyme disease? Most Lyme Borrelia in the SE Though rarely cited by public health officials, scientists have documented CDC map Borrelia burgdorferi in thousands of tick CDC says they don’t know the cause of Southern Lyme disease, which they call “Southern Rash-Associated and animal specimens from across the Tick Illness,” or STARI. South in published research spanning 20 years. Researchers have now identified that were reportable as Lyme disease and infection rate of the “deer tick." In more Lyme Borrelia species and strains in the northeastern U.S. were routinely fact, Yale University recently released a in the southeastern U.S. than in any other dismissed across the South. (Georgia new Lyme Disease Risk Map funded by a region of the country. Still, the CDC dis- dropped from 715 in 1989 to only 10 re- $2.9 million CDC grant, which was hotly courages doctors from testing humans ported cases in 2010.) contested by many. Yale researchers failed outside currently accepted "endemic" In endemic states, case numbers soared to note that state reported case numbers areas claiming that testing in such places because patients with the Lyme rash alone are incomparable with many other states increases the chances of "false positives." are reportable as cases, no positive test due to drastically different surveillance False positive Lyme test results are rare. needed. Not so in most southern states, practices employed outside the Northeast. Despite the low reported case numbers, where rashes following tick bites are rou- Moreover, Yale's risk map is based solely Lyme disease groups and organizations tinely dismissed and even left untreated. on black-legged ticks. And, after testing a have heard for decades from thousands With no test, no known cause, and the in- total of only nine black-legged ticks from of people living in the South who claim sistence that lone star ticks can't transmit a few southern states, the Yale research they have contracted Lyme disease with Lyme disease, cases of STARI are not re- team declared there was little risk of Lyme no travel history. Some report multiple portable. disease to humans living in the Southeast. family members infected or people con- Southern patients are told by doctors Along with past studies that also im- tracting Lyme disease multiple times. This they cannot have Lyme disease based on plicate lone star ticks associated with doesn't occur in regions where a disease is the low reported case numbers across the Lyme disease cases, Clark's new findings uncommon. region. These patients report that medical suggest otherwise. Curiously, Lyme disease cases were ac- providers often turn them away, refusing Clark's evidence significantly expands knowledged in southern states years ago. to treat them – even patients with histories the geographic area where Lyme disease In 1989, Georgia was the 4th highest state of tick bite, rash, compatible symptoms should be considered by medical pro- in the nation in CDC-reported Lyme cases and positive Lyme disease tests. Their viders and citizens alike. Lone star ticks with 715 on record. Back then, the CDC positive test results are often dismissed as are known to bite humans so frequently reported finding native human cases in "false," adding to the reporting problems. that even if only one percent are able to 27 Georgia counties as well as in several The belief that only the black-legged transmit Lyme disease, it would still pose counties in Florida and Alabama. tick, Ixodes scapularis, can transmit Lyme a tremendous threat to public health. New With the advent of the term STARI, re- disease has been widely publicized for risk maps are needed. ported cases of southern Lyme disease decades. Thus, Lyme disease risk has been plummeted. Suddenly, thousands of cases largely calculated based on the prevalence Continued on next page

8 The Lyme Times Ticks carry multiple species Kerry Clark's ongoing research may help thousands of lone star tick bite patients obtain proper diagnosis and treatment at last. His work may provide answers for so many chronically ill people living in areas where Lyme disease wasn't previously recognized. “This study’s findings suggest that multiple Borrelia species may be causing Lyme disease in the Southeast, another tick species may also be transmitting it in the Southeast, and that it may be much more common here than was previously thought,” says Clark. “Additional evidence presented suggests that some people may develop chronic infections, and the current antibody testing approach for Lyme disease may not identify the infections.” Called “The New Great Imitator,” Lyme disease is often mistaken for illnesses such as , , lupus, multiple sclerosis, rheumatoid , Lou Gehrig's disease, Parkinson's, ADHD, and even Alzheimer's. The new evidence indicates that medical providers should never simply dismiss Lyme disease as a possible cause in symptomatic patients living outside areas currently recognized as Lyme endemic.

About Kerry Clark, PhD Kerry Clark is a Lyme and tick-borne disease researcher at the University of North Florida. He also teaches courses in epidemiology and environmental health sciences at the Brooks College of Health. Clark holds a BS in Public Health, a MA in Public Health Epidemiology, and a PhD in Envi- ronmental Health Sciences with an emphasis on arthropod vectors and vector-borne disease ecology. Collaborating with researchers from Georgia Southern University, Clark helped to document the first isolation and characterizations of Bb in South Carolina. He has docu- mented the presence of three separate Lyme Borrelia species infecting ticks, lizards and small mammals in Florida and South Carolina and was the first to report finding Lyme disease spirochetes infecting wild reptiles. Clark has presented during conferences held by the CDC, the Lyme Disease Association, and the International Lyme and Associated Diseases Society. He shared his valuable insight with the Institute of Medicine’s Tick-Borne Disease Committee’s regional teleconference, the Virginia Lyme Disease Task Force, and GALDA’s Lyme Disease Awareness Program at the Georgia State Capitol. GALDA is proud to have worked with Dr. Clark over the past four years col- lecting patient case data, providing technical assistance,

Photo by L. Schmitz by Photo and raising funds to support his research. For a complete list of Kerry Clark’s research publications, visit GeorgiaLy- The author collected over 100 ticks in two hours near her Georgia home in July. The majority were nymphal Amblyomma americanum ticks, shown here in a meDisease.org brown plastic pill bottle.

Volume 25 Number 2 9 SPOTLIGHT ON THE NEWS Rash of Media Attention Heightens Public Awareness Major publications catching on to tick-borne disease issues By Pamela Cocks, MPH, MLS The NYT welcomes suggestions from Lyle Petersen, MD, MPH readers - give it a go. After decades of misinformation, the Director of the CDC’s Division of Vector- press seems to be on a roll answering the The Boston Globe Borne Diseases public’s questions about Lyme disease. Beth Daley, environment reporter at While Dr. Petersen grants that Lyme While the Wall Street Journal raised a few the Boston Globe, has included several disease is a serious and “sometimes long- issues of concern to patients last year, 2013 tempting topics in her special series on lasting illness,” he maintains that those has set a new pace - an unprecedented rash Lyme, including ongoing medical and sci- treated early will recover. Although some of media interest in the Lyme controversy. entific uncertainty while the number of symptoms may persist in some patients, Especially interesting coverage has ap- altered lives rises. Check out all the Boston the CDC is not convinced that chronic peared recently in The New Yorker, The Globe’s impressive Lyme related stories. symptoms actually indicate chronic Lyme New York Times, The Boston Globe, CNN Jennifer Crystal’s responses to the Boston that would benefit from “prolonged courses online, and The Poughkeepsie Journal. Globe (published in August) and The New of .” According to Petersen, an Although not all journalists have gotten Yorker are posted on lymedisease.org. extended treatment strategy is not war- ranted, is dangerous, and lacks support it exactly right, this uptick in publicity CNN Online appears to be a welcome plunge into the from published scientific studies. He mainstream media. Pam Weintraub’s opinion, published by further maintains that standard laboratory To read the full articles referenced below, CNN online in July, describes her family’s testing is adequate “when done correctly visit lymedisease.org/news/touchedbylyme/ nightmare with Lyme (“Why you should and performed with proven methods.” He lyme-nat-media.html be afraid of Lyme disease”) and helps dismisses methods used by proprietary set the record straight on the disease. laboratories as unvalidated, despite ample The New Yorker Weintraub is the author of Cure Unknown: evidence that “standard” tests are insen- In the July 1 issue, Michael Specter Inside the Lyme Epidemic, winner of the sitive. He also objects to a Lyme diagnosis examined “The Lyme Wars.” Shortly 2009 American Medical Writers Asso- by “clinical judgment” alone, since it lacks thereafter, NPR’s Terry Gross interviewed ciation book award, and executive editor specific criteria for treatment success. him on Fresh Air. Despite some enlightened of Discover magazine. Lorraine Johnson, Raphael Stricker, MD reporting, Specter repeated too much IDSA CEO of LymeDisease.org, picks up on standard misinformation. The New Yorker Weintraub’s remarks in her blog, “Lyme Past president of ILADS and medical di- published only one letter (Phillip Baker of Policy Wonk. Read the full text on page 12 rector of LymeDisease.org the IDSA-aligned American Lyme Disease of this issue of The Lyme Times. In presenting the CDC’s point of view, Dr. Petersen propagates myths about Lyme Foundation), while our website published The Poughkeepsie Journal several responses to the piece disease. Let’s follow the facts from the In- Over the last year, The Poughkeepsie ternational Lyme and Associated Diseases The New York Times Journal published a series of investigative Society (ILADS). The August 11 NYT opinion pages gave reports on Lyme disease. Most recently, Myth No. 1: “Most people with Lyme wide coverage to the Lyme controversy. As they detailed 3,000 emails showing how disease, if diagnosed and treated early, will part of Room for Debate, they gathered a federal health officials at the CDC and recover quickly after a short course of an- group of revealing letters: Deconstructing NIH have been cozying up to one side tibiotics. Nevertheless, some patients will Lyme Disease. Don’t miss opinions by of the Lyme debate - championed by the have persistent symptoms after treatment.” Richard Horowitz, Richard Ostfeld, Amy Infectious Diseases Society of America Fact: Based on a study of more than 4,000 Tan, Monica Embers, Brian Palmer, (IDSA) and its minions, to the detriment Lyme patients, a large number are not “di- Lyle Petersen, and Eugene Shapiro/Gary of Lyme patients and their doctors. agnosed and treated early” and go on to Wormser. But it was in Lyle Petersen’s response to develop chronic Lyme disease with a con- In their July 8 Personal Health section, Mary Beth Pfeiffer’s May 20 investigative stellation of life-altering musculoskeletal, Jane E. Brody looked at the “often mis- piece (“Chronic Lyme disease: Is it real?”) neurological and cardiac symptoms that diagnosed and mistreated chronic Lyme that the CDC afforded Lyme advocates can be devastating. disease.” While she gives fair coverage to the an opportunity to express their reasoned Myth No. 2: “Laboratory testing is controversy over long-term antibiotics, she counterpoint to their same old, same old helpful for patients in the later stages of gives undeserved credibility to researchers position: “Long-term antibiotics are not disease when done correctly and per- who have misinterpreted studies. She also warranted for Lyme treatment.” Some of formed with proven methods.” leans on the “post-treatment LD syndrome” the responses are summarized below. Fact: The commercial laboratory testing nomenclature and the bias it carries. Continued on next page

10 The Lyme Times approved by the Food and Drug Admin- of Lyme disease patients with prolonged from adult ticks do not develop a bull’s-eye istration is abysmal; sensitivity hovers symptoms.” rash. Ahern criticizes Petersen for failing around 46 percent for later-stage Lyme Fact: The limited studies alluded to by to discuss how insensitive “standard” and misses more than half of patients. They Dr. Petersen had significant design flaws. Lyme tests are and how the highly adapted should not be used for diagnostic testing Among the problems that invalidate these Lyme pathogens evade antibiotics and as they exclude patients with clinical Lyme studies: lack of generalizability, inclusion subvert the adaptive immune system. He disease symptoms. of patients who had already failed the same neglects to mention flawed design and Myth No. 3: “Although it’s true that treatment, relatively short courses of “long- conclusions in the studies he references, standard Lyme disease tests are not sen- term” therapy, insufficient study and that other published trials show a sig- sitive during the first few weeks of illness, power to draw conclusions, and unre- nificant improvement in symptoms from these methods are much more sensitive alistic outcome expectations. These limited extended treatment. Ahern submits that when patients have been infected for a studies cannot be used to exclude longer when all data is considered, the unbiased month or more.” treatment for chronic Lyme. Other studies conclusion does not support the CDC’s Fact: This myth is based on circular rea- have shown that such patients may benefit recommended practice of withholding soning: in the few studies claiming in- from longer treatment when short-course longer-term antibiotics from patients who creased test sensitivity, patients with later- antibiotic therapy has failed. are desperately ill. stage Lyme disease were selected because Myth No. 7: “While some physicians and Dorothy Kupcha Leland they had positive Lyme tests, and then treated patients can claim anecdotal success Vice President Education and Outreach, they had positive Lyme tests! This is anti- with such therapy, such ‘success’ stories are LymeDisease.org scientific. often very misleading. Even worse, patients Leland calls out the CDC for stubbornly Myth No. 4: “Since ILADS guidelines have died from this treatment.” adhering to its party line – useless policies provide no definition for chronic Lyme Fact: Many “success” stories have been and guidelines - denying care to suffering disease, anyone with persistent symptoms documented in medical literature. In Lyme patients. Instead of addressing issues from nearly any cause can be labeled as contrast, Dr. Petersen’s fear-mongering as- raised by The Poughkeepsie Journal article, having Lyme disease.” sertion that “patients have died from this Leland points out that Dr. Petersen under- Fact: Because commercial Lyme testing treatment” is based largely on anecdotal scores the tired CDC position on Lyme. is so inaccurate, physicians often rely on reports of patients who were poorly su- Dorothy’s family has been kicked to the clinical evidence for diagnosis. Several pervised, often because infectious disease curb by doctors who follow the CDC’s studies have outlined the constellation doctors refused to participate in their care. Lyme recommendations. They wheeled of musculoskeletal, neurological and These doctors wouldn’t hesitate to treat their daughter into her first appointment cardiac symptoms seen in Lyme patients. other chronic infections with months to with an ILADS doctor, and although Thus Dr. Petersen’s description of these years of antibiotics, considering such treatment was slow and difficult, things typical clusters of symptoms as “persistent treatment necessary and relatively safe. got better. symptoms from nearly any cause” shows a Infectious disease principles go out the “Tens of thousands of Americans face basic lack of understanding of the clinical window, however, when it comes to Lyme a similar situation, and the CDC does approach to Lyme disease. disease. nothing for them. Worse than nothing: Myth No. 5: “Some advocates of the By propagating these myths, Dr. Pe- same-old, same-old. CDC policies effec- ILADS guidelines claim that standard tersen shows that the CDC and the IDSA tively deny access to lifesaving care. The testing algorithms are insensitive, instead are still part of the vast problem with Lyme CDC doggedly adheres to out-of-date promoting laboratories that use unpub- disease. Let’s hope that someday they will treatment guidelines and ignores scientific lished, proprietary laboratory methods become part of the solution. reality. This does as much harm as the spi- that have not been validated.” Holly Ahern, PhD rochete that causes this insidious disease!” Fact: “Standard testing algorithms” for Lyme are insensitive and miss many pa- Associate professor of microbiology and Lorraine Johnson, JD, MBA researcher at the State University of New tients. In contrast, the tests preferred CEO of LymeDisease.org York Adirondack in Queensbury. by ILADS have been validated in large Dr. Petersen restates the IDSA/CDC According to Ahern, the CDC’s rigid numbers of Lyme patients, and their paradigm patients have long heard: Lyme definition of Lyme disease limits its clinical diagnostic accuracy is appropriate disease is easy to diagnose and treat. criteria for diagnosis and treatment. “At for later-stage Lyme. They are much better But, as Johnson points out, their recom- the heart of the issue are the effectiveness than the inadequate commercial testing mended treatment is both ineffective and of short-term antibiotics and the appli- endorsed by the CDC and the IDSA. dangerous for those with chronic Lyme. cation of longer-term treatment.” The Myth No. 6: “Four double-blind, pla- While Johnson agrees that prevention CDC considers Lyme an acute infection, cebo-controlled treatment trials con- as well as early diagnosis and treatment and excludes other pathogens in the ducted by leading academic centers failed are laudable goals, she insists that they disease definition. They ignore the fact to show lasting benefit of long-term anti- should not be at the expense of treating biotic therapy in reducing the symptoms that the predictive value of the bull’s-eye rash is less than 10 percent, and that bites Continued on next page

Volume 25 Number 2 11 HIGHLIGHTS FROM THE BLOGS Lyme Policy Wonk IDSA cronies hijack Lyme research agenda and suppress vital science By Lorraine Johnson, JD, MBA uments showing that CDC and NIH gov- acting too soon and the risk of acting too ernment employees have collaborated with late. Does it matter if alternative treatments Pam Weintraub’s IDSA researchers to defeat legislation and are available? Who decides? These are commentary to other efforts to instill accountability into matters of public policy involving moral CNN online spot- the research process. values, not science. They are matters of lights key problems Science depends on the free marketplace right and wrong. Public policy determi- in Lyme research of ideas. Few scientists refute their own nations need to involve stakeholders af- and treatment. The theories; their rivals do. What happens fected. real travesty here when researchers supporting one paradigm The Institute of Medicine recognizes that is that for the past “get hold of some institutional position for guidelines to be trustworthy, patients ten years research of power (a scientific journal, a research must be involved when the questions are funding has gone institute) and impose their favorite line framed and guidelines are reviewed, and to a small group of of research there?” [Labinger J, Collins H, guideline panels must include “those af- researchers with a preconceived mindset on editor. The One Culture? A Conversation fected” by their recommendations. Why? Lyme. Researchers who pursue persistence, about Science. University of Chicago Press; Because those affected by public policy de- like Stephen Barthold, DVM, PhD, find 2001] If you can successfully exclude your terminations should have a voice in them. themselves unfunded because they are on rivals, you have the whole playing field to Patients also need a voice in setting the re- the ”wrong side of the tracks” in terms of yourself. But what is produced is dead-end search agenda. research paradigms. During Congressman science that does not improve patient care; New government institutions like Smith’s 2012 hearing, Barthold testified you get what Congressman Smith refers to Patient Centered Outcomes Research In- that, “Because of firmly entrenched opinion as ”the lost decade” of Lyme research. You stitute (PCORI) recognize the importance within the medical scientific community … squander public trust and public funds. of patient involvement in setting research research proposals submitted to NIH that Today, Dr. Wormser says “So what?” to agendas to achieve outcomes that matter feature persistence following treatment are the mounting evidence for persistence. A to patients. (I serve on the Patient En- likely to receive prejudicial peer review new article by Dr. Stricker and me sum- gagement Panel of PCORI.) It’s time to in the contentious environment of Lyme marizes the 23 studies demonstrating per- create a “no fly zone” in the Lyme Wars by disease.” sistence of the Lyme bacteria in animals and including all stakeholders at the table and What Barthold is saying is that the peer 27 published case reports of persistence in instilling accountability into the research review system for government funded Lyme humans. What constitutes “good enough” funding and guideline setting processes. disease research is broken. A comment evidence to treat? You may contact Lorraine at lbjohnson@ he received to his last rejected grant ap- A decision to intervene and provide care lymedisease.org. plication made it clear that the rejection is a value judgment based on the risk of was based on politics rather than science: “The lay public that has so far denied the validity of scientific data will misun- Media Attention — from page 11 derstand the significance of…[persisting non-cultivable Borrelia burgdorferi]…and seriously ill patients. use it as additional evidence to support the Johnson cites the growing health crises - more patients becoming ill and sicker with Lyme idea of treatment-resistant Lyme disease.” every year. According to LymeDisease.org’s published survey of over 4,000 patients, 65% In the same vein, a recent grant appli- had to cut back or quit work/school at some point in their illness. cation approved (perhaps in the same Johnson criticizes Petersen for dismissing studies by Oksi, Donta, Cameron, Fallon and cycle) for Gary Wormser, MD, chair of the Krupp when he claims that patients quote only anecdotal evidence, or for interpreting ev- IDSA guidelines panel, engendered con- idence in a manner that denies patient care. troversy when one of the CDC peer re- Those charged with our public health are not even trying to determine the optimal viewers returned his honorary stipend over treatment for Lyme, maintains Johnson. “Short-term treatment fails for over 90% of pa- perceived process irregularities. tients with chronic Lyme.” This “do nothing” approach denies patients access to the only ef- Peer review is broken in Lyme because ficacious treatment option. “For seriously ill patients, waiting is not an option.” a small insular group of researchers have Johnson recognizes that both the IDSA and the CDC are suffering a crisis of credibility a lock on research funding. A Freedom of with patients. “Decision making by those who are neither impacted nor accountable to pa- Information Act (FOIA) request by Kris tients has gotten us into this crises. Public policy must involve all stakeholders—not simply Newby of Open Eye Pictures exposes doc- those of a single special interest group with a vested interest in maintaining its lock on re- search grants.”

12 The Lyme Times PATIENT VOICES California Infection Triggers Decades of Misery Dorris caught Lyme in Garrapata State Park. Garrapata means tick in Spanish By Stephanie Dorris I have had Lyme, Bartonella and Babesia for 25 plus years, although I have only been diagnosed and under treatment for eight years. My early problems were au- toimmune related. I had severe endome- triosis for 10 years (including 14 surgeries), but in early 2000 I began extreme fatigue, major migraines, chronic pelvic pain, multiple shingles attacks and cognitive issues. Needless to say, I got way worse before I got better, and it took four more years before a correct diagnosis through IGeneX. I travel from Illinois to California for my Lyme treatment, but am happy to do so. About a year ago, after being on daily doses of a variety of IV antibiotics for over 700 straight days, I started to get better - dramatically. I went from sleeping 20 hours a day down to nine. The "fog" virtually lifted.

Each day continues to be a challenge, and S. Dorris by provided Photos I have to constantly remind myself not to AFTER Lyme disease, Stephanie Dorris suffered multiple health issues and had to give up her job. take things too fast. Having said that, I have been able to accomplish things that were to be incredible and safe, is also new and allowed my body to finally begin healing beyond my grasp for 10 years (reading a controversial. We used ketamine. It was a the Lyme and co-infections. My current book, taking a walk, playing golf or having a low dose delivered over a 30-minute drip, path is to conclude the IV antibiotics in the drink). Although I was on heavy pain meds every day for 2 weeks. next six months (which will total a little for the chronic pelvic pain, my physician Each day I would get a period of pain over three years of daily infusions). I am introduced a new treatment two years ago relief after the treatment and each day that again hopeful that one day I can go back that "reset" my brain, and the pain was gone pain-free period grew until after two weeks to work as I have been unable to do since in two weeks. My treatment, while I found the pain went away forever. I did require a 2001. My mind still isn't 100%, but it is couple of treatments six months surely clearer today than two years ago or later but the pain never got even just nine months ago. another hold. We now believe that I was infected I recently spoke with a during a hike in a California state park woman in Florida whose son when I was in my early 20s (I'm 50 today). is taking larger dose ketamine Shortly after the hike, I had a high fever, treatments for his horrible pain. horrible body aches, and throbbing in my This protocol puts patients in ears. I lost muscle control of my tongue. I coma-like state over 3-4 hrs was on a very short course of an antibiotic for several days in a row, in a (in case I had strep) and I got better – for hospital setting. They are using a bit. Turns out the name of the park is it for complex regional pain Garrapata State Park, which I now know syndrome but Lyme patients will means "tick" in Spanish. So to sum up, I often fall into this category. went to the "tick" park to get Lyme disease. It took me almost a year to get The universe does seem to have a sense of off pain meds, however I have humor. BEFORE Lyme disease, Stephanie Dorris was a CFO for high tech been narcotic-free for a year. I Stephanie Dorris lives in Belleville, Il.. start ups in the Silicon Valley. believe that conquering the pain

Volume 25 Number 2 13 ADVOCATES IN ACTION Maine Passes Lyme Bill Despite Vigorous Opposition

Maine Governor Paul LePage signed a Lyme bill requiring the Maine Dept. of Health and Human Services website to inform the public of the options for the treatment of Lyme disease, including “extended treatments.”

By Constance “Happy” Dickey, RN sociation, provided stellar testimony in the House with a vote of 122-18, making Governor Paul LePage signed LD 597 support of LD 597. this look like an easy win. Wrong! Once on June 25, 2013 at a ceremonial signing The bill was assigned to the Health and the bill passed to the Senate, the road- that included many of the key players who Human Services Committee, which held a blocks began. The bill was actually on the worked the bill through a long and con- public hearing on March 13, 2013. More calendar 16 more times. Much of the anti- tentious battle in the Maine legislature. than 20 people, including some infectious lobbying was coming from physicians in In the fall of 2012 Lyme patients Diane disease doctors from around the state, the House and Senate. The Maine Medical Farnum and Rhonda Buker met with Rep- provided testimony. Twelve-year old Sally Association cited physician autonomy as resentative Sheryl Briggs(D) and Senator Jordan soon becoming the “poster child” the reason for lobbying against it. Even- John Patrick(D) to discuss Lyme legis- of Lyme for the H&H committee. Sally’s tually, Rep. Briggs reported that there lation. The first step of the three-year mom, Lisa, sent over 800 emails to garner were other large organizations opposed to plan they devised would give patients support for this legislation. the bill; many believed that passage of the the “Right to Know” via the state’s CDC Committee members removed ILADS Lyme bill would affect the passage of their website. The initial bill asked the Maine from the language and replaced it bills based on politics and having nothing CDC to include a link to ILADS on its with patient-oriented websites such as to do with the actual content of the bill. website. MaineLyme.org and the LymeDiseaseAs- A few of us became extremely hesitant At this point MaineLyme board sociation.org. At the last minute, Rep. Deb about continuing legislation at this members Susan Holmes and Happy Sanderson (R ) threw in language from point. It is so easy for things to go wrong Dickey, RN, and MaineLyme medical the recently passed Virginia bill that re- and for a well-meaning group to make advisor Beatrice Szantyr, MD, joined the quires physicians to notify patients that it worse for Lyme patients. As a person effort to provide credible information a negative Lyme test does not mean you or group pushing for legislation, you owe from national sources. Both ILADS di- don't have Lyme. The final vote was 12-2, it to the Lyme community to be open to rector Robert Bransfield, MD, and Pat “Ought to Pass as Amended.” them, ask for their assistance and input Smith, president of Lyme Disease As- From this point LD 597 sailed through when necessary, and make things better

14 The Lyme Times Lyme Bills Attract Bipartisan Support in U.S. Congress By Sharon Hawkes, MLIS The Centers for Disease Control and Prevention’s (CDC) recent press release may help pave the way for tick-borne diseases to receive better attention from Congress. The CDC recently ad- mitted that actual Lyme cases are ten times higher than what it has been reporting – 300,000 cases a year instead of 30,000. Lyme ad- vocates have quoted the larger numbers for over a decade, based on studies done in Connecticut, New Jersey, and Wisconsin as far back as 1996. Regardless of who is doing the reporting, it is clear that Lyme disease has not been stopped or even slowed down by current practices. A handful of federal legislators has been calling for change in US policies and practices regarding Lyme and tick-borne diseases. Democratic Senator (CT) has introduced a bill, S.719, to create a Tick-borne Diseases Advisory Committee that will examine means to better diagnosis, reporting, education and treatment of Lyme and other tick-borne infections. On the Happy Dickey, President of MaineLyme House side, Republican Chris Smith (NJ) has introduced H. 610 for them, not worse. to appropriate $250,000 for the Committee’s work each year Susan Holmes made it her mission to attend all but two sessions and H. 611 to apply an additional $20,000,000 annually toward in order to stay right on top of everything happening behind the reaching its goals, with the CDC receiving the majority of the scenes, and to let the Lyme community know what was needed. funding. Smith prefers HR 611 but thinks HR 610 is more likely Bill Whitten, Lyme patient and lobbyist, was often there sup- to pass. So far over twenty co-signers of the bills, mostly from porting us, working the halls and helping Susan understand the highly Lyme-endemic areas, are lending support. The bill is un- process. To my surprise, the initial response to the bill from leg- likely to be discussed unless many more legislators sign on. islators was good, suggesting that the timing for success was right Lyme disease advocates can help move these bills into a based on the legislators’ personal experiences and the public’s. hearing, and ultimately a vote. Each can speak to the federal rep- concern about Lyme disease, which has exploded in the last four resentative and senator in his or her district. Calling the office years. and registering your opinion with an aide takes a few minutes. Rep. Sanderson said LD 597 taught her how serious this issue is Making an appointment when legislators are in their home offices for Maine citizens. “The debate about Lyme disease was one area can set the stage for an effective face-to-face meeting. where the divide was not party line, but rather a bipartisan sup- Legislators should be asked to sign on as cosponsors if they ported battle fought vigorously against members of the medical have not already. Members of the Subcommittee on Primary community to increase access to information,” she said. “Passing LD Health and Aging (overseeing the Senate bill) and the Subcom- 597 was a tremendous example of how advocates and legislators mittee on Health (handling the House bills) would be especially from both sides of the aisle can join forces and do what is right. It's important to have as supporters. By requesting that our federal a victory for Maine.” officials take over the lead on building a healthier and safer USA, Sen. John Patrick carried the bill in the state Senate. Dickey said we can send a message that the status quo when it comes to Lyme that without his tenacious determination to make this happen, disease is not tolerable. “we would have been dead in the water.” To find your legislator, type in your ZIP code at thomas.loc.gov. Dickey also praised Rep. Briggs, who was unavailable for Sharon Hawkes is the moderator of the online group Massachu- comment for this article. “She was a tremendous powerhouse settsLyme. during the entire process,” Dickey said. “She was never willing to back down, even when the bill seemed doomed. She worked tirelessly for us, believing in the cause more than we could have imagined.” Farnum said the process was long and complicated but HAVE A NEWS ITEM? the patient advocates hope use the next two years to get ready to Send your news to educate the legislators about the doctor issue. “We need to re- search other states' doctor protection laws and craft a really good [email protected] bill for the next legislative process,” she said.

Volume 25 Number 2 15 Activists Protest in Thirty Countries Around the World Michele Lott Studio Michele Lott By Lisa Hilton every Lyme patient to be a part. We all know how it is Switzerland, the United Kingdom and the United though, what we want to do in our heads is not what we States. The United States alone had over 30 protests or Thousands of people around the world who are are usually able to do physically. Everyone struggled. awareness events. touched in some way by tick-borne illnesses gathered Trying to get volunteers got harder, yet these state co- About 37 states participated, some having several on May 10 and 11 to try to get recognition that Lyme ordinators kept on. It was truly amazing. protests in each state, for example, Florida had three. and other tick-borne diseases are serious illnesses re- Some really awesome ideas came out to play for this New York and California had two. Some had protests, quiring urgent attention and research. protest. We made it clear that we didn't care what kind while others lit buildings up with green lights to let the In October, 2012, 30 countries came together to of event that each state had, just that each state have public know about Lyme disease. plan the “Worldwide Lyme Protest.” Swedish organizer something, whether it was making a tick out of sand A crowd of over 400 people came to Union Square in Charlotte Therese Björnström created the Worldwide on the beach in Florida, or a Lyme walk arranged by a New York City to hear speeches by several prominent Protest Facebook Group to try to gather activists from mother/daughter team, or a big rally in a big city with Lyme researchers and doctors. California and Arizona other countries around the world so they could join Lyme doctors speaking, or a whole town hanging up both protested at medical centers that deny that chronic in. I'll never forget the day I did a "Google Video Hang Lyme Green ribbons on their front doors or mailboxes. Lyme disease exists and refuse to treat patients that are Out" with Charlotte from Sweden, Joan Nielson from It didn't matter. The only real goal was to get the word sick with Lyme disease. Yolanda Foster, from The Real Denmark, and Karen Smith from Australia. Hearing out about Lyme disease in any way you could. Housewives of Beverly Hills, and Erica from Chicago’s the accents, seeing that it was dark in their windows Countries involved were Australia, Austria, Belgium, “The Loop” both showed up to help Lyme patients while it was morning here, was totally surreal. Yet all of Brazil, Canada, Czechoslovakia, Croatia, Denmark, protest. Erica’s mother was protesting in Chicago at the us from across the world were joining hands fighting for the Faroe Islands, Finland, France, Germany, Greece, same time. Lyme Disease Awareness, so others would not get sick Hungary, Iceland, Ireland, Netherlands, Norway, Illinois protested in front of the Chicago Tribune to like us, so others who were sick already could get help. Poland, Romania, Russia, South Africa, Spain, Sweden, encourage that paper to retract their article debunking We did not want any “stars” in this project, we wanted

16 The Lyme Times Activists Protest in Thirty Countries Around the World

Switzerland, the United Kingdom and the United Chronic Lyme and asking them to do an evidence- have a lot of family support. States. The United States alone had over 30 protests or based article about Lyme disease. This protest went on A group in Napa, California, demonstrated outside awareness events. for two days. Several interviews came out of it. WGN Bottle Rock 2013, the largest musical fundraising rock About 37 states participated, some having several radio station invited Lyme advocates to do an interview concert Napa has ever put on. Thousands of people protests in each state, for example, Florida had three. that was broadcast all over Chicago. were walking by. Having a booth was prohibited, but New York and California had two. Some had protests, New Hampshire held an awareness rally at their state they handed out fliers and some bracelets stating “Lyme while others lit buildings up with green lights to let the capitol. They had a ceremony involving the governor Disease, End IDSA guidelines.” Near the end of the day public know about Lyme disease. declaring Lyme Disease Awareness Month for May. they met with an official representative ofBottle Rock A crowd of over 400 people came to Union Square in They also held a “flash mob dance.” who wanted to know more about why they were pro- New York City to hear speeches by several prominent Iowa protested at the Des Moines Capitol Bldg. More testing. Lyme researchers and doctors. California and Arizona than 400 people showed up for a Lyme run in Kansas. The big news regarding next year’s protest is that both protested at medical centers that deny that chronic Others states with walks, info booths, Mayday and the Worldwide Protest will be joining Lyme disease exists and refuse to treat patients that are showings and other events included Alabama, Florida, forces. Organizers Josh Cutler and myself along with sick with Lyme disease. Yolanda Foster, from The Real Maine, Connecticut, Maryland, Michigan, Minnesota, the team from Mayday have decided to combine Housewives of Beverly Hills, and Erica from Chicago’s Wisconsin, North Carolina, Ohio, Pennsylvania, South smaller events so more people will attend fewer events. “The Loop” both showed up to help Lyme patients Dakota, Tennessee, and Texas. This will increase chances of press and media covering protest. Erica’s mother was protesting in Chicago at the One mother/daughter team putting on a rally to- these events, and will be less work for people who are same time. gether (Nikki and Connie Murray) really touched me. too sick to organize events. Just getting to the events is Illinois protested in front of the Chicago Tribune to Seeing a family member reaching out to do this for her all a Lyme patient should have to do. encourage that paper to retract their article debunking daughter was heart warming. I know people don’t all Continued on next page

Volume 25 Number 2 17 Whether their event was big or small, advocates worked endlessly trying to spread Lyme disease awareness often with a minimum volunteers or outside help from family or friends. I will never understand: where are our family and friends to help us get this disease recognized? — Lisa Hilton, Wisconsin

“We decided to have our protest at UCLA Medical Center because doctors at this institution had told several patients in our group they did not have Lyme or Lyme isn't in California. Although we notified the media, no one showed, even though we had Yolanda” — Caryn Brady. California

“Joining the WLP helped me transcend another layer in my chronic Lyme healing path and helped me reclaim a power, a light inside of me. Connecting with Lisa Hilton and an amazing family of Lyme fighters nationwide and internationally through the WLP helps me feel safe, loved, and not alone.” — Erin Doty Senger, Virginia

18 The Lyme Times “As a result of the Worldwide Lyme Protest, there has been a notable increase in news reports on television, radio and newspapers about tick-borne diseases. Some local county parks and recreation departments have already updated their web sites to inform the public on medical best practices. We have been invited to have an information table set up at the next annual state school nurses’ convention early this fall.” - Jim Berger, Illinois All photos by Chrysa Pikramenos taken at the Worldwide Protest in New York City. York in New Protest Chrysa at the Worldwide by Pikramenos taken All photos World-renowned pediatrician Charles Ray Jones, left, listens intently to Shelly Holden, whose daughter Vanessa organized the NYC event. Dr. Jones was a featured speaker at the protest.

“Lyme patients came from across the state to help spread the word about Lyme disease. We set ourselves “We did this for those adults and up in a park right across the street from Bellin Hospital. children who are suffering the Every doctor and nurse needed to walk through there on unbearable crippling effects of Lyme. the way to their cars. We will continue each year until The best medical institutions should Bellin decides to train someone to help us here.” be available to all, the fact that Lyme patients are being turned away and — Jennifer Christie, Wisconsin possibly misdiagnosed is just not right..” — Laurie Myers, Arizona

Volume 25 Number 2 19 FEATURE The Not-So-Great Real Life of a “Beverly Hills Housewife” Yolanda Foster shares personal details of her struggle with Lyme Photos by Laura Landau by Photos Yolanda Foster poses with daughters Bella, 16, and Gigi, 17, at the Lyme Research Alliance Gala in Greenwich, Connecticut on April 6. Yolanda also has a son, Anwar, 14. Her family was key to her recovery, she said.

By R. Tim Haley it – and dozens of medical professional expert on chronic fatigue syndrome. Con- opinions later, all she got was an unsat- versing in her mother language, he told her Yolanda Foster, who gained national ce- isfying and intangible diagnosis of chronic he had never seen such a detailed workup. lebrity as a star on the reality TV show The fatigue syndrome. He ordered another two-day round of Real Housewives of Beverly Hills, recently “They tried to tell me I was just over- testing and sent her home. Six weeks later found herself in a not-so-picture-perfect worked,” she said in our interview, “but he told her a simple test had shown spi- role as a very sick person with persistent I said, no, that’s what I’m good at, I’m a rochetes in her spinal fluid. “... [H]e di- symptoms and no diagnosis. genius at juggling 100 things at once.” agnosed me with chronic Lyme neurobor- In an interview with The Lyme Times, She and her family already ate a healthy reliosis and a handful of co-infections,” Yolanda recalled that in the last season of diet, and she exercised six days a week. according to the speech she gave for the Housewives, she had to finally let go of dis- This diagnosis was just not concrete 2013 New York Gala to benefit the Lyme cipline and face the fact that something enough, her intuition was telling her. “I Research Alliance. was seriously wrong in her brain and body. couldn’t tolerate any sound or write or read Since she had passed the point where she She spent the next seven months in bed. or get out of bed. Inside, everything was could be cured with 28 days of treatment, Her husband David Foster’s wealth just gone ... life just leaves your body” she Yolanda had a port inserted surgically gave her access to an army of different said in our interview. in her chest and began receiving intra- doctors and quality medical care, she said. Yolanda, who is from Holland, flew to venous antibiotics. For 90 days she was But despite two weeks of probing and Belgium to see Professor De Meirleir, an mostly bedridden and, she remembers, not prodding – “extreme testing,” she called

20 The Lyme Times allowed to take a bath. She “met Mr. Herxheimer” and “it was absolute hell. I felt like I was going to die,” she said in our interview. “After 60 days, I started to see a bit of improvement, but minimal. Unfortunately, my body had become a toxic waste dump by then. The yeast started to come out of every part of my body,” she said in her Gala speech. Although she did not want to spend a month and a half away from her children, her friend Suzanne Somers convinced her to spend six weeks at Sponaugle Wellness Institute in Florida to take a holistic view of her illness. When she returned home, she decided not to go back on anti- biotics. She does colonics, filters her blood with ozone, and does vitamin drips as well as other holistic measures. By her calcu- lations, she has come back to about sixty percent of her normal functioning, “seventy percent on good days.” Yolanda’s husband and her three teenage children - ages 14, 15 and 18 - were not only supportive but became her health network as well as handling the family chores. Her husband learned the nurse’s duties and became her private nurse. Yolanda still has joint pain and extreme fatigue and considers herself to have had a kind of brain injury, but her brain function has improved, and she is not bedridden, she said. Taking the per- spective that she has a brain injury has allowed her to focus on her curative journey. Yolanda, right, and a friend joined the Worldwide Lyme Protest in Los Angeles to She does not want to blog or write about what she has done on draw attention to Cedars Sinai and UCLA medical centers’ failure to treat Lyme. The child, Alex Frizat, also has Lyme. her chronic Lyme journey because she is still seeking a cure. Until she feels 100% confident she has found something that works, she to use to bring awareness to this cause of Lyme disease.” doesn't want to share half-information with people. “I won't stop until I figure it out,” she added. Yolanda did make an exception about speaking out on the At 60% or even 70% of her previous capability, this determined, subject of Lyme disease. At the 2013 Lyme Research Alliance Gala focused woman said she thought she had been picked for this a few months ago, her speech surprised a well-heeled New York journey, and she intends to do something about finding answers. audience with an impassioned keynote outline of the terrors of Then, she says, she'll have a book to write. Even if her cure is not Lyme disease. It was followed by a few uncomfortable questions for everybody, she thinks it will be for somebody. about our healthcare system and its Lyme disease policies. She She asked the Gala audience “…where does one turn when di- helped raise over $1 million that night for Lyme disease research, agnostic testing in the U.S. fails, and doctors keep sending people speaking on behalf of her fellow Lyme warriors. “I went from being like us home with prescription drugs to mask our symptoms?” an outspoken, multitasking, social butterfly to being trapped in a “... We don't have proper diagnostic testing for chronic Lyme mentally paralyzed cocoon,” she said in her speech. disease, and there is no defined treatment protocol or cure. As She had the discipline to get through the last season of hard as this journey has been for me, I feel I was given this ex- Housewives. But during the final day of filming, as she was arguing perience for a reason. I'm here to represent all my fellow Lymies. with a fellow cast member, she found she could not form a sentence We will no longer allow this disease to terrorize our lives. We or find the right words. Finally, in frustration she blurted, “You’re must break the silence, we must speak up for those who cannot an asshole,” she revealed in her speech. Looking embarrassed, she be heard, we must restore hope for those who have given up, and added, “We don’t even have that word in my language.” we must share our stories with the world,” she said at the end of Yolanda believes that the efforts of her husband David to save her Gala speech. his bride from a health catastrophe kept her going and is the main During our interview, looking back, she speculated on where reason she is alive. “I honestly stared at the ceiling for so many she might have gotten bitten. She travels often but thought it months that I still remember every light bulb in it. My children's might have been when she and her husband David were building after-school smiles at my bedside were the only bright spot in my a new house in Malibu three years ago. days. It was for them and my husband that I found the strength “I would go up and sit on the hillside every day for hours, to fight this lonely battle and continue to breathe and live in this watching the beautiful deers on our five acres and thinking I was body that once belonged to me,” she told the Gala audience. so blessed to have nature this close,” she said. In our interview Yolanda explained, “If you say you have cancer, The reader can find Yolanda's speech on a link at Lymedisease.org/ people are sympathetic, but with Lyme disease, people don't un- news/lyme_disease_views/yolanda-gala-speech.html. derstand, and it is isolating. The little celebrity that I have, I need

Volume 25 Number 2 21 FEATURE CDC photo Advocates report tight security at the CDC’s new Biosafety Level 3 lab in Fort Collins, where they met with officials in June. In addition to diagnostic and prevention programs, the lab deals with bioterrorism preparedness and response programs related to vector-borne disease. Advocates Accuse CDC of Harming Patients CDC’s search for common ground looks like same old, same old By Phyllis Mervine, EdM attend. We’ve met with them before and without it costing anything?” [Mervine, nothing good ever happens. Let them and Schmitz joined the conference by On June 11, a group of patient advocates watch the video if they are so interested in phone, as did Kathy White (see below)] from around the U.S. converged on the Ft. patient concerns. Collins, Colorado, facility of the Centers Longstanding mistrust drives Other advocates said they were grateful for Disease Control and Prevention (CDC) for the opportunity, and thought an actual skepticism at the invitation of Ben Beard, PhD, chief meeting might be more fruitful than In his opening remarks, Lyle Petersen, of the Bacterial Diseases Branch, Division previous efforts to communicate, though director of the DVBD, went out of his way of Vector-Borne Diseases (DVBD). In the most didn’t believe the CDC would actually to assure attendees that he and his col- end, six Lyme advocates attended in person do anything to address their concerns. leagues hoped the meeting would promote – at their own expense – while three joined The agenda was designed to allow mutual understanding and help find by phone. The decision to attend was each advocate a 10-minute slot to share common ground. “We’re here to listen,” fraught with debate, however. concerns, which left some wondering how he said. CDC’s Chris Prue added that they Patient groups generally do not trust much the CDC really wanted to hear. Liz hoped to “build relationships” and discover the CDC because there has been a fun- Schmitz, president and founder of the if there are “things we could do together damental and longstanding lack of trans- Georgia Lyme Disease Association, was after today.” parency, exclusion of patient viewpoints, especially incensed. For years the CDC Advocates wasted no time telling the and favoritism towards the Infectious has refused to count Lyme cases in the CDC about the serious harm they are Diseases Society of America (IDSA), a Southeast, she alleged. causing Lyme patients. Tacitly acknowl- private medical specialty organization. “Ten minutes!” she fumed. “I could use edging the historic tensions between the Not hopeful that a face-to-face meeting 10 days to address these issues! Why should CDC and the Lyme patient community, Ben would lead to any significant change, I sug- I spend money to fly to Ft. Collins for 10 Beard told invitees that one of the purposes gested that we send the CDC a video of minutes when I can call Dr. Beard and talk of the meeting was to “encourage trust.” His New Jersey Congressman Smith’s federal with him on the phone for a whole hour statement was greeted by skepticism. Lyme hearing they hadn’t bothered to

22 The Lyme Times Top complaint During the course of the morning, ad- vocates touched on many issues, including former NIH Lyme program officer Phil Baker’s infamous remark about “Lyme loonies” recently uncovered in a FOIA (Freedom of Information Act) request by Under Our Skin producer Kris Newby. They also charged CDC with misrepresenting the science. But their top complaint was the CDC’s endorsement of the diagnosis and treatment guidelines of the IDSA and the prominent link to them on the CDC website. The guidelines cause many people to go undiagnosed, and limit treatment to two-to-four weeks, making a bad situation worse, they said. “Whatever you call it – post-treatment Lyme, chronic Lyme – it doesn’t matter,” said Jill Auerbach, chair of Hudson Valley (NY) Lyme Disease Association and STOP (Stop Ticks On People), an educational nonprofit dedicated to preventing tick- borne diseases. “With the huge number of infected people and under-reporting, what is this disease really costing our society? CDC can help by not promoting the IDSA guidelines.” Betty Maloney, MD, medical advisor of the Minnesota Lyme Association, said the IDSA guidelines portray Lyme in black and white. This prevents doctors from realizing that there are a lot of gray areas, she stated. The science is still “evolving and unsettled,” she said, and “there’s an unwillingness to recognize uncertainty.” Dr. Maloney also complained that the CDC is not transparent about their infor- mation sources. “We want to know who your sources are.” In addition, the CDC J. Der Bedrosian by Photo website provides a handy link to the IDSA This poster at the Worldwide Lyme Protest in New York City expresses a sentiment shared by many patients. guidelines, “which conflict with some of put her presentation together, which she just in the Northeast and Upper Midwest, your own findings,” she said. described in an email: she thinks. This causes many doctors to fail “The number one thing is your website,” “My handwriting has been bad, and to diagnose it and even refuse to test for it. asserted NatCapLyme Association (Wash- typing is now very difficult, so I dictated “If a patient does persuade a doctor to ington DC) executive director Monte the speech to a high-school aged hospital give the test, and the test is positive, the Skall. “You could change this whole thing volunteer (who now knows a lot more doctor often says, ‘Your test was a false overnight, just by taking down the IDSA about Lyme),” she wrote. “A member of our positive because we don’t have Lyme guidelines.” support group then came over and typed disease here.’” White said. We don’t have Lyme here it up.” Patients in Texas hear the same thing all Kathy White, corresponding secretary White thinks the CDC can easily prevent the time, according to Texas Lyme Disease of the Lyme Association of Greater Kansas many cases of Lyme by making doctors Association (TXLDA) board member City, called in from her hospital room aware that the disease is in every state. Debra MacGregor, a nurse. Introducing where she was recovering from a stroke. Statements on the CDC website mislead herself by saying she wasn’t a “loonie or She had to overcome some challenges to doctors into thinking that Lyme disease is Continued on next page

Volume 25 Number 2 23 member of a Lyme cult,” she related that their licenses yanked by the OPMC, the sight, and no one knows which ones are when her son caught Bartonella and Babesia state’s official disciplinary body. Several pathogenic. in addition to Lyme and was terribly sick, NY doctors who treat chronic Lyme are Skall called on the CDC to “do the right she was horrified by the ignorance of the currently under investigation, and patient thing,” to validate the sick, work to cure medical professionals they sought help groups are pursuing legislation to protect their illnesses, prevent others from be- from, including their pediatrician. them. Other states have already passed leg- coming ill, and stop disparaging patients. “First he said we don’t have Lyme in islation to protect doctors who treat Lyme “This is not a ‘disease du jour,” she said. Texas. Information he did not give us outside the IDSA box, including Cali- The South is freely available to anyone who wants fornia, Connecticut, Massachusetts, New to find it,” she said. “Why would a very Hampshire and Rhode Island. The South has a special problem with smart, board-certified physician affiliated MacGregor believes physicians should Lyme disease, according to Schmitz. In with the Texas Medical Center not know have the freedom to treat according to 1989, Georgia was fourth highest in the about this?” their own clinical judgment. The CDC has U.S. with 715 cases. The CDC confirmed After what MacGregor called “a million the power to change the climate of fear and native cases from 27 Georgia counties. dollar workup,” which found swelling of the should start by creating a “collaborative All that changed with the invention of the optic nerve, brain lesions and 20 subjective panel that includes all stakeholders, in- term, “STARI” – Southern Tick-Associated symptoms, many IDSA doctors refused to cluding ILADS doctors and patients,” she Rash Illness. Then, instead of tracking cases see her son, even with a referral from the suggested. by county as instructed by the CDC's case definition, they declared entire states in pediatrician, so they ended up going out of Testing must be improved state for care. With appropriate treatment the South “nonendemic” for Lyme disease. for co-infections the boy recovered and is According to the CDC website, the Therefore, rashes alone were not reported doing well. narrow case definition is intended for sur- as cases as they were in most northeastern Linda Lobes, president of Michigan Lyme veillance, not diagnosis, but doctors often states where experts estimate 70% of re- Disease Association, complained of the don’t make this distinction. Most follow ported cases represent rashes alone. same problem in her state, and described the IDSA guidelines, which adopted the Southern case numbers plummeted. By some of the studies her group has worked surveillance case definition for clinical 2010, Georgia reported only ten. In a Catch on to help establish the fact of Lyme disease diagnosis. They also require a screening 22 nightmare, the CDC started saying in Michigan. They have been involved in ELISA followed by a confirmatory Western Lyme was rare in the South, discouraged tick dragging and testing, bird netting, and blot, despite published studies that show the testing of patients outside “endemic” a canine study where they teamed up with the tests to be insensitive – around 50% areas, and instructed medical providers to veterinarians. – which is not sensitive enough for a dismiss positive test results as “false pos- screening test. CDC advises this approach itives” without investigation. Doctors afraid to treat despite their earlier disclaimer. “Why wouldn't the CDC encourage Advocates hold the CDC responsible Advocates complained that many pa- medical providers to test symptomatic pa- for the climate of fear felt by doctors on tients can’t get diagnosed because CDC is tients in an area where more Lyme Borrelia the front lines, because of CDC’s close ties identified so closely with the IDSA. Skall species and strains have been documented with IDSA and their strict guidelines. Mac- said her group had to go to the legislators to than in any other part of the country?” Gregor graphically described the fear by fix this problem. Virginia recently passed Schmitz asked. listing some of the excuses doctors use not legislation requiring doctors to tell patients Schmitz also pointed out that lone star to see Lyme patients. that the test results may be falsely negative. ticks are common in the South and are ag- “They say, ‘It’s too political,’ ‘The medical Lobes said if doctors report a case that is gressive biters. The first cases of lone star board says I can’t treat you,’ ‘We follow the positive through IGeneX, a specialty lab tick-associated Lyme were documented in CDC guidelines,’ ‘I just can’t take the risk,’ in California, “the state throws your test a New Jersey county in 1984. A study from ‘You must be depressed,’ ‘You don’t have a results in the garbage.” 1978-1982 in the same county showed that bull’s-eye rash,’” She added, “We have 1,000 Other advocates called attention to the 96% of the ticks collected during May-July people in our TXLDA registry. When does multiple strains and species of Borrelia when Lyme cases peaked were lone stars. common sense come into play?” in the U.S., and the fact that there are no Yet, according to the CDC, lone star ticks Michigan doctors are also afraid of tests at all for many of them. Liz Schmitz do not transmit Lyme, she said. losing their licenses, Lobes said. One of the pointed to the diversity of Borrelia species Schmitz accused the CDC of embracing early cases of doctor prosecution by a state in the South, where the CDC refuses to “the myth that only one species of Borrelia medical board for overdiagnosis and over- recognize Lyme at all. Making bad things causes Lyme,” while people in the Southeast treatment of Lyme happened in Michigan. worse, a recent FDA advisory tells doctors are getting ill from the so-called “STARI.” [Ed. The doctor was vindicated on 35 of 37 to use only tests made with the B31 Shelter The CDC dismisses STARI as “not Lyme cases. See report in The Lyme Times #14, Island, New York, strain, she said. disease” and “mild,” but no one has ever 1996] I added that this doesn’t make scientific done long-term studies. Auerbach chimed in on the same topic: sense when people are discovering new “Are we going to change the disease Doctors in New York are afraid of having Borrelia species every year, with no end in name every time a new Lyme strain is dis-

24 The Lyme Times Research Alliance (LRA), a leading non- profit funder of cutting-edge research. Over the last 15 years, LRA has evolved from a group of parents concerned about their children, to raising awareness through, among other things, a cur- riculum (with Merryl Streep), to the civil investigation of IDSA with CT Attorney General Blumenthal, to funding for the Lyme Research Center at Columbia Uni- versity for which they raised the lion’s share. “We stay out of the limelight,” Wild said, “because our researchers will take a lot of heat if they take money from people who are out on the barricades.” Currently the FDA has approved a clinical trial for one of their researchers who has developed a treatment for a subset of chronic Lyme pa- tients. Another researcher is developing a new diagnostic test. Another is investi-

Photo by J. Thomson by Photo gating persister cells, the spirochetes that Since the CDC didn’t allow any photography at the Ft. Collins lab, we share this archival photo of Pat Smith, survive treatment. LDA president, and Ben Beard, PhD, CDC Chief, Bacterial Diseases Branch, Division of Vector-Borne “It’s clear we need accurate numbers,” Diseases at the 2012 LDA conference in Philadelphia. Wild said. “With an accurate count we would have ten times the current cases, covered?” she asked. In my speech, I sug- their conclusions on testing a grand total and that would shine a spotlight on Lyme. gested that substituting the term “bor- of nine ticks from the Southeast!” she said. The $25 million funding the NIH currently reliosis” for Lyme, STARI, and diseases Policy may also be based on old and in- spends would start to look like under- caused by other Lyme Borrelia would go a correct information, Smith said. A 1998 Il- funding.” Bigger numbers would also open long way to solving this problem. linois study, for example, showed infected doctors’ eyes, he suggested. “Everyone Outdated Research ticks in eight counties, while a 2011 study would recognize it as a big problem.” documented infected ticks in 26 counties. MacGregor concluded with a heartfelt Lyme Disease Association President Pat In addition, the new study showed statement. “If the CDC knew what was hap- Smith focused her talk on the evolving state higher rates of infection in prairie rather pening all over the U.S. on a daily basis, you of the science of tick-borne diseases and than woodland areas, in contrast to the would be horrified,” she said. “Patients are the failure of health policy makers to keep Northeast and the Far West, where wooded being treated as disposable. You’ve gotten up with it. She cited recent studies contra- areas are considered higher risk areas. into trouble before for ignoring illnesses. dicting previous research. Smith cited studies from South Dakota, Why repeat history?” Lyme policy may be based on limited where in 1993 officials claimed ticks Postscript data, she stated, citing the CDC map em- couldn’t live; today they have found ticks phasizing Lyme in the Northeast and in five counties. In Tennessee, health com- Advocates wound up the meeting with a Midwest, while ignoring what is happening missioners’ 2003 map said they didn’t have tour of the multi-million dollar Level-3 lab- in the rest of the country. ticks; researchers have now found ticks in oratory and an informal barbecue at Beard’s “It implies that the disease does not occur 32 counties. The Army declared Kentucky home. They say they will be watching to see nationwide,” Smith said. “Wrong!” She ex- a “medium risk” state, but doctors there are if the CDC takes any action on their com- plained that the U.S. has 3,000 counties or still not reporting cases. plaints, but most remain cynical about the county equivalents, and only 99 returned “The bottom line is that many of our chance for any positive change. the surveillance questionnaires on which earlier notions have been shown to be Inauspiciously, the week following the the map was based. “You can’t say there are wrong,” she said, emphasizing the im- CDC meeting in Colorado, New York’s no ticks if the reports are just absent,” she portance of keeping up with current Poughkeepsie Journal (PoJo) published an said. “The truth is, we don’t really know.” science. op-ed by Lyle Petersen, his response to a Schmitz seconded this by criticizing a series of PoJo articles critical of the CDC. tick map Yale recently produced thanks to Unified message Petersen touts the familiar party line; his a $2.9 million NIH grant. She complained “We’re all saying similar things in dif- excuse was that he sent his piece to the that the CDC uses limited data to make ferent ways. The message is clear,” stated paper before the advocates’ meeting with sweeping generalizations. “They based Peter Wild, executive director of Lyme the CDC.

Volume 25 Number 2 25 FEATURE Trusting the CDC After decades of broken promises and government neglect, a leading patient advocate remains cynical By Phyllis Mervine, EdM The following text is excerpted from Phyllis Mervine’s remarks delivered by con- ference call to a CDC meeting in Ft. Collins, Colorado, June 11, 2013, at the invitation of Ben Beard, chief of the CDC Bacterial Diseases Branch, Division of Vector-Borne Diseases (DVBD). I am joining you today to express the concerns of the Lyme patient community and to discuss areas of potential collabo- ration. NIH Klempner clinical trial My first collaboration with the gov- ernment was in 1995. NIH invited me to be a patient representative on the ad- visory panel for the clinical trials for the Klempner study. I hoped the study would benefit Lyme patients. Was I ever wrong! I don’t have time to go into detail, but people promised things they didn’t What would people say if we did the government credibility while actually deliver. Klempner and NIH overstated something like this to cancer patients? harming patients. Promises made by gov- the conclusions, and the trial ended up Part way through the study, the other ernment are too easily broken. hurting the very people we were trying patient rep and I talked about quitting the So it should not be news to you that to help. The Lyme patient community se- panel. We knew NIH was just using us so CDC relations with the Lyme community verely criticized me for my role, calling they could say they involved patients. But are not good to this day. Patients have long me naïve, and maybe I was. I was actually we thought no one would care if we quit, felt that the CDC continues to take them shocked by what happened. and we might have more influence if we on a long ride to nowhere. Actually, it’s Klempner started the trial thinking that stayed on. So we did. worse than that because big government what he was calling “intensive” treatment Still today, the NIH website has the has the capacity to do big harm. Going was unnecessary, and that’s what he found. same headline proclaiming “Chronic nowhere would be better than going in The protocol he chose wasn’t “intensive” Lyme Disease Symptoms Not Helped by the wrong direction, which has been our by any stretch. All the patients had failed Intensive Antibiotic Treatment,” a con- experience. the same or similar courses of antibiotics clusion that then-NIH Lyme program The institution you work for — the CDC prior to enrollment. The trial was not even officer Phil Baker promised us would — is actually hurting Lyme patients. For fully enrolled, but that didn’t stop Kl- not be made, and that contradicts the example, by restricting testing options and empner from drawing hard and fast con- conclusions of subsequent NIH-funded limiting case counts to the B31 strain of clusions from a very small sample size. clinical trials. Borrelia (from Shelter Island, New York), Not only that, NIH rushed to put up their Lessons learned the number of “true Lyme” cases appears clinical advisory, as if to make sure people to be getting smaller and smaller; that is, Like other advocates, I have horror didn’t get an extra single “unnecessary” according to CDC officials, the Borrelia stories about collaborating with gov- day of antibiotics. TheNew England slice of the pie is shrinking (see graphic). ernment. It can be treacherous business. Journal of Medicine expedited the publi- This doesn’t make sense when people are Patients can be used as window dressing cation of the study. And we started getting discovering new Borrelia species every without having their concerns ad- more reports from patients that their year, without an end in sight or knowing dressed. Patient participation can offer doctors were cutting off their treatment. which ones are pathogenic. We should be

26 The Lyme Times talking about the whole pie - Borreliosis. Dividing the Lyme disease slices may make sense for microbiologists, but not for patient care. If you really want to help Lyme patients and collaborate with us to do so, you must change some things. We need some ground rules. So here are my ideas. CDC Core Values The CDC states their core values as accountability, respect, integrity, trans- parency, honesty. I don’t think anyone in this meeting would disagree with these. So in principal, we are on the same page. But how are these values applied and im- plemented? For instance, how does CDC’s preferential treatment of the IDSA square with objectivity and not being “influenced by political issues”? How does taking five years to respond to our FOIA request for public information add up to account- Phyllis Mervine used this Powerpoint slide as part of her argument for calling all the different Borrelias “borreliosis.” See Alan MacDonald’s Opinion article on page 5. ability and transparency? And then there are your goals. How does big pie – Borreliosis – into tiny slivers, so new, promising ideas for diagnosis and the CDC’s goal to reduce disease severity none of them will trigger a horrified public treatment. Chronic Lyme exists and is jibe with their promotion of guidelines reaction or pressure the government to studied, and maybe we find a cure. The that leave up to 50% of Lyme patients ill respond to an epidemic. These issues must CDC does not participate in targeting spe- and 25% disabled? How can the CDC be cleared up before we join forces with cialty Lyme doctors or legitimate labs that allow and even praise diagnostic tests that the CDC. patients depend on. LymeDisease.org is regularly miss up to half the true Lyme What couldn’t we do with all the energy able to refer patients to the vast resources cases? This is unconscionable. How is the of advocates coupled with the power of of the CDC because their information is CDC goal to collaborate with the FDA on government moving in the same direction accurate, fair and evidence-based. new diagnostics compatible with helping rather than operating as adversaries? How In my dream, all stakeholders are repre- the patient stakeholders when the FDA can this dream become a reality? sented in public policy decision-making. recently posted an advisory restricting I, too, have a dream Patients and their doctors will have a testing to the B31 strain? This is insane! seat at the table. Paternalism will wither In my dream, the CDC is working on away as people participate in decisions behalf of Lyme patients. It is no longer OK STARI (and other regional and enjoy a medical environment that en- for government employees to call these courages them to express their personal Lyme-like diseases patients “loonies” or “bad guys” and their preferences and values. Informed choice doctors “quacks” or “parasites.” You won’t the CDC introduces) is rules. The Lyme community partners hear a CDC employee say that Lyme is a with the CDC, and our patient advocacy a smoke-and-mirrors yuppie disease that only rich suburbanites network promotes CDC projects of get. You won’t hear doctors cracking jokes invention to divide the mutual interest. at the expense of patients. While we all benefit from building trust, big pie – Borreliosis – In my dream, the CDC renounces trust must be earned; it’s not something any bias that led them to promote the into tiny slivers.... you just bestow. We will be waiting to see IDSA guidelines, and accepts the ILADS what happens after this meeting. The big guidelines as another valid standard of question remains whether the CDC is care. The CDC website is reviewed by a I’ll leave STARI to Liz [Schmitz, willing to meet our needs even half way. balanced panel of stakeholders, and pref- Georgia Lyme Disease Assn.], but in my erential treatment is not given to the view STARI (and other regional Lyme- Phyllis Mervine is the founder and IDSA in setting public policy. The CDC like diseases the CDC has invented) is a president of LymeDisease.org. will award grant money to people with smoke-and-mirrors device to divide the

Volume 25 Number 2 27 TBD BASICS Ticks Open Pandora's Box of Pathogens Alphabet soup of co-infections complicates diagnosis and treatment of "Lyme" By Doug Fearn Q: How is babesiosis diagnosed? and you can get babesiosis over and over. A: There are blood tests, but the test Bartonella Co-Infections and Associated reliability declines a few weeks after in- Diseases fection. These tests suffer from the same Q: What are the symptoms of bar- lack of sensitivity that plagues Lyme tonella? Q: What are the common Lyme disease A: Bartonella often starts with a rash “co-infections” and “associated diseases?” disease testing. PCR tests for babesiosis can be useful if positive, but a negative and swollen glands. The rash is different A: The ticks that carry the Lyme from a Lyme disease bull’s eye and may bacteria also often carry microor- look like long, thin red areas, somewhat ganisms that cause other diseases. The like stretch marks. In many people bar- most common “co-infections” are ana- tonella is a mild disease and the symptoms plasmosis, ehrlichiosis, babesiosis, bar- subside on their own. But in some cases, tonella, and Rocky Mountain spotted bartonella may cause on-going fatigue, fever. Anaplasmosis, ehrlichiosis, and depression, anxiety, headaches, swollen Rocky Mountain spotted fever may be glands, sore soles of the feet, GI problems, cured by some of the same antibiotics arthritis, generalized aches and pains that are prescribed for Lyme disease. similar to the other tick-borne diseases, Babesiosis is a different type of disease, seizures, neurological disorders, and even however, caused by a blood parasite and dementiA: Vision loss and eye infections not a bacterium. Antibiotics alone are not may occur. As with some of the other effective against babesiosis. tick-borne diseases, the symptoms of bar- New organisms such as viruses and mi- tonella tend to come and go. Some areas croscopic worms are being discovered in Anne Kjemtrup Photo have a very high rate of bartonella or- ticks. Their role in human illness is not Giemsa-stained blood smear of a WA-1 type ganisms in ticks, sometimes much higher yet known. Few doctors are familiar with Babesia in human red blood cells showing than the rate for Lyme bacteria. these diseases. They may fail to recognize intracellular morphological variety: Abbreviations: Q: How is bartonella diagnosed? A, ring form; B, ameboid shape; C, tetrad the symptoms or test for these diseases, A: There are blood tests, but as with so many people suffer from untreated in- configuration. The bar in the illustration represents 10 μm. other tick-borne diseases, the tests are fections. The lab tests for these co-in- often inaccurate. Some doctors report fections have many of the same problems success with a series of PCR tests, but as Lyme tests. Often it is this combination result does not rule out the disease. Ex- amining the red blood cells under a mi- tick-borne bartonella has not been rec- of diseases that makes the patient so mysti- ognized long enough to have a reliable fyingly ill and unresponsive to treatment. If croscope may reveal the parasites, but few diagnostic laboratories are skilled at diagnostic testing procedure. Few doctors treatment for Lyme is unsuccessful, suspect are familiar with tick-borne bartonella: tick-borne co-infections. the tedious job of carefully observing the blood cells. The cause of tick-borne bartonella is a Babesiosis Q: What is the treatment for babesiosis? bacterium similar to one that causes “cat Q: What are the symptoms of babe- A: It is important to remember that scratch disease,” which typically is far less siosis? babesiosis is caused by a protozoan serious and has different symptoms. A: People with babesiosis sometimes parasite and not by a bacterium, so an- Q: What is the treatment for bar- have no symptoms at all. However, it can tibiotics alone will not cure this disease. tonella? be life-threatening for someone with a Many people appear to recover without A: Antibiotics are used to treat bar- suppressed immune system. It is also more treatment, but the disease may flare-up tonella, but the antibiotics used to treat serious for people over age 50. Symptoms later. Since babesiosis is closely related to Lyme disease are usually not effective are often the same as for Lyme disease malaria, anti-malarial drugs are used to for bartonella: As with the other tick- (see list in the back of this booklet), but treat it. Usually an atovoquone drug like borne diseases, treatment time can be there may also be a very high fever of up Mepron or Malarone is used along with lengthy. Since this disease has been rec- to 104°F, and anemia: night sweats, chills, an antibiotic such as azithromycin; the ognized only recently, doctors are still severe headaches, fatigue, “air hunger,” combination increases the effectiveness learning which drugs are best. Levaquin, and sleep disturbances are common. You of the treatment. azithromycin, and Rifampin are can get babesiosis from a blood trans- As with most tick-borne diseases, you do commonly used to treat bartonella. fusion from an infected donor. not develop any immunity after infection

28 The Lyme Times disease rash; it is usually smaller and may have raised areas. The rash is more common in children than adults. Children may also suffer from swelling of the hands and feet. Other symptoms may develop later, including nausea, diarrhea or constipation, loss of appetite, cough, stiff neck, confusion, and weight loss. Untreated, the disease can sometimes be fatal in a few weeks, especially in children. Q: How are anaplasmosis and ehrlichiosis diagnosed? A: Although there are blood tests for anaplasmosis and eh- rlichiosis, they vary in accuracy and reliability depending on when the test is performed and the lab performing the test. It is difficult to obtain an accurate test result during the first few weeks after infection. Q: How are anaplasmosis and ehrlichiosis treated? A: Anaplasmosis and ehrlichiosis are usually treated with . Most cases respond quickly when diagnosed and treated promptly. Like Lyme disease, you can get these diseases over and over again from new tick bites. Doug Fearn is the president of the LDA of Southeastern Penn- sylvania. Photo courtesyMichigan U. Photo Rocky Mountain Spotted Fever Q: What are the symptoms of Rocky Mountain spotted fever (RMSF)? A: Despite its name, RMSF is far more prevalent in the South and East than it is in the Rocky Mountains. Like Lyme disease, it is caused by a bacterium. Untreated, it can sometimes be a fatal disease. It is spread by dog ticks as well as the deer tick. After two to fourteen days, most infected people suffer from a fever (sometimes 102°F or higher), headache, and achiness. Most people will develop a rash, which may begin around the wrists and ankles, but it sometimes starts on the trunk. A classic symptom is a rash on the palms and soles of the feet, but fewer than half of the patients will have that. Untreated, about half of the people infected with RMSF will develop permanent neuro- logical problems. If you handle a tick while removing it, be sure to wash your hands thoroughly to minimize your risk of infection with RMSF. There are reports of infection simply from contact with an in- fected tick. Q: How is RMSF diagnosed? A: RMSF requires a clinical diagnosis, which means that it is up to your doctor to evaluate your signs and symptoms to determine if you have the disease. Early blood tests are not ac- curate. Q: How is RMSF treated? A: Doxycycline is the recommended antibiotic. Anaplasmosis or Ehrlichiosis Q: What are the symptoms of anaplasmosis or ehrlichiosis? A: Like Lyme disease, anaplasmosis and ehrlichiosis in- fections peak during May, June, and July with the symptoms typically appearing from a week to a month after infection. The initial symptoms are flu-like and can include high fever, chills, headache, fatigue, and general achiness. Fewer than half of in- This free booklet is available from the Lyme Disease Association of fected people report a rash. The rash is different from a Lyme Southeastern PA at LYMEPA.org.

Volume 25 Number 2 29 ASK THE EXPERT Ten Steps to Feeling Better on Less than $32 a Month By Jerry Simons, PA blespoon daily in water helps with alkalinity anxiety and stress, maintains the ears and aids in digestion. Monthly cost: $5 ability to hear, and helps with memory Having Lyme disease can be painful in 4. Baking soda. Bicarbonate helps alkalize function. Turn on your radio or visit your many ways. In addition to the physical pain the body, creating a hostile environment local library to borrow some music CDs. and psychological burden, we know that for germ growth. Salt helps to stabilize the Cost: $0 Lyme is not a cheap disease to have. Lucky, low blood pressure often seen in Lyme. Its 8. Practice daily positive affirmations. there are many ways you can feel better, a great afternoon pick-me up. If you have People who believe that they will feel better even on $32 a month. high blood pressure or heart disease, check soon often do feel better before those who 1. Low dose Naltrexone. This is a before beginning baking soda. Mix in cold expect to remain ill. Just keeping positive, powerful immune regulator, proven to water with a drop of honey for a cheap af- especially with affirmations, is a powerful benefit auto-immune disease, HIV, and ternoon energy drink. Monthly cost: $3. tool in advancing your well being. Cost: $0 come cancers. Persistent Lyme has many 5. Support/compression stockings. Nu- 9. Emotional release techniques. Since autoimmune features (Lyme invades the merous studies show that something as the 1950s, ERT has been increasing in psy- white blood cells and we start attacking simple as wearing support hose/stockings chological therapy. ERT helps to channel ourselves!). A 50mg pill can be crushed and helps improve venous return and reduce bad emotions/thoughts through our energy mixed with water and taken over 10 days. chronic fatigue symptoms. Wear them pathways. Many informational videos are LDN can help people with both an over when you will be on your feet all day. May available online. Cost: $0. and under active immune system. Monthly be covered by insurance. Cost: varies based 10. Tonic water. Many brands of tonic, cost: less than $2. on strength ($12). including low no sugar tonic waters, have 2. Sunlight. The sun provides vitamin D, 6. A light walk. Its been established that quinine which is a famous muscle relaxer. nitric acid (vital to enhance blood flow). Its even a brief 10 minute walk can help to lift Consider a glass on occasion to help with warm rays are anti-inflammatory and gen- fatigue. No stretching required! Cost: $0. muscle cramps/stiffness. Cost: $10. erally elevates our spirits. Cost: $0 7. Listen to music. Music therapists have Jerry Simons, PA, is associated with the 3. Apple cider vinegar. There are many been touting the benefits of music on the Morrison Center, New York, NY. amazing health benefits of "ACV." A ta- nervous system for years. It helps reduce

Got Lyme? Join an Online Support Group

Want to learn more about Lyme disease? Want to connect with other patients? Your state online support group allows you to connect with other Lyme patients in your area - a virtual meeting place – a source of information and emotional support for people with tick-borne diseases. For help finding your state support group, visit lymedisease.org Click on “Activism” and choose “Not in California” Or visit your state site directly. Enter your state name into the following url: health.groups.yahoo.com/group/(YOURSTATENAME)Lyme (all sites include a state name run together with “lyme”) e.g., Maryland: health.groups.yahoo.com/group/marylandlyme In South Carolina, insert a hyphen between state name and Lyme: (southcarolina-lyme) For Washington DC, go to DCLyme

30 The Lyme Times OINOIN our fight ght forfor patientpatient rights rights and and better better care care for people for people with Lyme with Lyme JJ and otherand tick-borne other tick-borne co-infections diseases by by becoming becoming a membera member of LDo! of LDo! LymeDisease.org is the go-to source for news, information and health-care policy analysis in the Lyme community. We keep you up-to-date via our website, blogs, social media, as well as our quarterly journal Th e Lyme Times. We supervise a national network of online support groups for patients. We provide educational grants to health care professionals who want to learn more about treating tick-borne diseases. We fund research critical to improving the diagnosis and treatment of Lyme patients; and we conduct and publish the largest patient surveys of Lyme-related health care issues. When you become a member of LymeDisease. Join us by mailing in this form, or org, you make our voice even stronger. join online at lymedisease.org

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ILADSSAN DIEGO2013 LYME DISEASE BASICS COURSE

October 17, 2013 | San Diego, California PRE-CONFERENCE SPECIAL For medical professionals who are new to the treatment of tick-borne diseases, or would like a refresher course on the basics. ILADSSAN DIEGO2013 ANNUAL LYME DISEASE CONFERENCE

October 18-20, 2013 | San Diego, California Merging Research and Clinical Skills in the diagnosis and treatment of Lyme disease.

ILADSGALADINNER HELP HONOR A PIONEER IN THE FIGHT

October 19, 2013 | San Diego, California Help honor a pioneer in the fight against Lyme disease at the 1st Annual Gala Awards Dinner: Nick S. Harris, PhD, founder of IGeneX Laboratory