I've known Josey for about 7 years and every year is filled with adventures and so many great memories. We used to hang out all the time and I would force her to dance and sing karaoke with me. During middle school she started to show symptoms of Lyme disease, although at the time no one knew what it was, and everything started to change. I tried to always be supportive and understanding but as a 13 year old I found it difficult to comprehend what was happening to my best friend. I can't even begin to know what must have been going through Josey's mind as she experienced all of the change being brought upon by the Lyme symptoms. Watching her struggle and be in pain is so hard but I know how strong she is. I have always been a pessimistic thinker and Josey always tried to teach me to be more optimistic. She finally broke through and I began to be more positive but it's sad because now I have to remind her to be positive. It's just sad to see your best friend lose hope. I mean it's sad to see anyone lose hope so I am very proud of Josey and her mom for persisting and finally getting a diagnosis. All the Chronic Lyme information is available on another one of the posts and I really encourage everyone to go read it if you haven't already. I really want to focus this post on the joy of being best friends with Josey. Her mom asked me to write for their blog and I agreed. I never really knew what I was gonna write about. I think she asked me to write at the beginning of May. Since then I have spent endless hours with Josey. We spent an entire weekend together earlier in the month and just hung out. We went bowling just the two of us and I bragged about being good but she managed to beat me, haha. We like to cook and we watch movies all the time. We plan to live together during college which I'm excited about not only because she cracks me up but also because she wants to be a chef which means I get lots of yummy food! We always joke about being like adults because we take care of each other and plan our apartment and cook but it's just fun. She lets me be myself and although she won't admit it I know she thinks I'm funny :). We always pick on each other and I think a lot of people actually think we don't like each other which is so funny to us because they couldn't be more wrong. Anyway, enough rambling! If any of you have personally met Josey Busby you know how wonderful and kind and beautiful she is. I am so thankful God has put her into my life and I know she brings happiness into lives of many others. Josey fights Lyme everyday but she's still my funny weird best friend and I love her. :)
The initial intentions of the "fight Lyme with Josey" bracelets were to raise awareness, show support for Josey, and collect funds to assist in a trip to The Mayday Project, a protest outside the Infectious Diseases Society of America. We've had to make a choice between going to the protest and making a trip to meet with a new LLMD. There's just no reasonable way to do both.
This new doctor is a leader in the field of Chronic Lyme treatment and after extensive research, we chose him and his staff because we believe they will treat the whole person - addressing Josey's pain more aggressively, her severe neurological symptoms, and her difficulties with sleep. They, like most LLMDs, do not accept insurance for any part of the payment for their services. The tragedy of having to choose between the protest and the doctor, is that we want to be a part of the change that is so needed in the medical and insurance industries, but can't because we need to travel out of state to a doctor who cannot accept insurance and continue to effectively treat Chronic Lyme.
Josey is disappointed about a decision not to go to the protest but desperately needs to meet with this new physician. He is in the Washington, D.C. area, near the protest, but we couldn't get an appointment that coincided with the protest dates. If you have a bracelet, please wear it and post pictures to Twitter, Facebook, or Instagram with the hashtag #fightlymewithJosey in the title or tagged on the picture, tweet, etc., as we enjoy checking this to see who's posting these. Several people used the hashtag but we can't see it because it's in the comments, so FYI.
Those who bought bracelets or donated toward a trip to The Mayday Project protest, check in with us and let us know if you're okay with us either donating the money to a Lyme disease foundation or using it toward the trip to see the doctor. We will be responsible with what we have been given. Thanks for supporting Josey and for both learning about Lyme and sharing the information with others.
If you'd like a bracelet, either comment on this post, send me an email (there's a link on this blog) or contact me via Facebook or Twitter. Thanks again.
Hey guys! Jenna here. I’ve known Jo for about 4 years, and she’s been like a sister to me. I even call her mom “momma”. It’s scary when your best friend has surgeries that normal 50+ year olds have. Telling me all the ridiculous theories (or so called diagnoses) doctors had, including malingering (which means faking it), had me concerned that they would never figure it out. Then she said someone had it- Lyme disease. I thought that meant this was all going to be over with some doxycycline and a nap. I had no idea how complicated Lyme was, and chronic Lyme baffled me. A few months later I was presented with my greatest academic challenge yet, a argumentative research paper worth 50% of my grade. I was so excited because I was going to dedicate my paper to my best friend. Grammar mistakes caused me to get a 90 (a B where we’re from), but I’m still very proud of my paper because I got to support Jo. Although I plan to be an orthopaedic surgeon (at least as of now), I know that no matter the field I’m in I will listen to my patients, fight for the right diagnosis, and always have Lyme in the back of my mind.
The Phantom Menace
Chronic Lyme disease is the culprit of a divide in the medical community; yet, according to the Infectious Disease Society of America’s (IDSA) guidelines, it does not exist. IDSA guidelines state that there is insufficient evidence for Lyme disease to be considered a chronic infection after regular antibiotic treatment (“The Clinical Assessment”). Instead, it is a psychosomatic disorder, classified as post-Lyme Syndrome that is caused by “hypochondria and laziness” (“The Clinical Assessment”; Rosner). Yet, “10-20% of treated patients suffer from symptoms…for months and even years following treatment” (“Lyme Disease Study”). This discrepancy has led to a medical debate that limits physicians’ abilities to treat patients with chronic Lyme, which devastates patient care (Gebhart). In order to protect those suffering from chronic Lyme disease, the government should ignore IDSA’s guidelines and support Lyme Literate physicians and fund research for the cure.
IDSA guidelines are too controversial to mandate full government support of treatment regiments. The Attorney General found evidence that the guidelines were manipulated and “excluded opposing views from its panel” (Klotter). According to the current Lyme Guidelines, a patient will be improperly treated if they have chronic Lyme, which is worse than not receiving treatment (Hoppel). Guidelines are also influenced by politics. Johanna Ferguson, who won the Dean’s Award for Health Law at the University of Boston, says, “Often, practice guidelines reflect the industry's interwoven relationships rather than the best available medical knowledge”. The statistics about Lyme are skewed because Lyme disease is not only underreported, but misdiagnosed (Gebhart). The symptoms of Lyme disease are not specific (Hoppel), which makes the disease difficult to diagnose. The only tell-tale sign of Lyme disease, a bulls-eye-shaped rash, is seen in about 30% of cases (“Lyme Disease Test”). The tests are extremely inaccurate, with “50%-70% rate of false negative results” (Gebhart), and “sick patients cannot get diagnosed and not be treated because of antiquated, unsubstantiated tests” (qtd in Rep. Smith). If these statistics are the basis for widely accepted guidelines, shouldn’t they be accurate?
Because Lyme disease is a bacterial infection, physicians expect patients to be healthy after a round of antibiotics. Those who refute the existence of chronic Lyme disease argue that the disease does not remain in the body post-treatment; rather, patients with persistent symptoms are not getting enough antibiotic to kill all of the bacteria (Barbour). This claim was discredited when doctors saw their patients getting better after extended antibiotics (Ferguson). “At least 19 independent societies representing the USA and numerous European countries have produced remarkably similar clinical practice guidelines for Lyme disease, discouraging the diagnosis of chronic Lyme disease,” says Paul Lantos, M.D. from Duke University Medical Center, but these 19 other societies have no listed scientific credentials in the article- a technique used by Lantos to bolster his argument without any proof. IDSA and others are concerned about long time use of antibiotics (Hoppel), which causes a problem when bacteria become resistant to drugs. Being overcautious has left patients to “dangle in the gap between two sides of an academic debate” (Rosner). Treatments or doctor’s visits that deviate from IDSA guidelines are not covered by insurers, and doctors who want to treat the diseases can lose their licenses (Klotter; Ferguson), which depletes available patient care.
IDSA guidelines are used as a basis for the Center for Disease Control’s (CDC) guidelines, which are what doctors use for their diagnoses, and what insurers use to determine coverage (Klotter; Rosner; “Rep Smith”). Because of this, patients are “terribly underserved” (Gebhart), and their care suffers. Most of the money for research is from the National Institute of Health (NIH), which gives funds based on public health needs (“NIH research planning”). If one study found that most patients still had remnants of the bacteria’s DNA in their blood (Rosner), while another found that most of the patients diagnosed with chronic Lyme disease more likely have fibromyalgia or chronic fatigue syndrome (Lantos), then more research is needed before chronic Lyme patients and their doctors are discredited. And since the 30,000-40,000 patients with Lyme may only represent 10% of all cases, this is an issue of public health (“Lyme Disease Study”).
Since IDSA guidelines govern multiple aspects of patient care, the best way to help those suffering with chronic Lyme is awareness. A survey of New England residents found that “public opinion can alter how the disease is treated” (Closter). Senator Blumenthal from Connecticut is currently trying to pass a bill to receive research funds for Lyme disease (“Senator Blumenthal”). Congressman Smith from New Jersey pushed for patients of chronic Lyme to receive treatment despite the guidelines (Rep. Smith). Patients with Lyme disease cannot sit and wait for the government to sort out the problem. Since May is Lyme disease awareness month, the Mayday Project encourages patients to peacefully protest in front of IDSA’s headquarters. The best way to change the opinion of the government and physicians is to continue research for the cure and inform people of the dangers of Lyme disease (“Lyme Disease Study”). Physicians also must be educated about Lyme disease. Since Lyme Literate physicians are “few and far between” (Gebhart), educating our doctors can reverse the way patients are treated. Making people aware of chronic Lyme disease may be the push that leads to support, and physician support will only increase the credibility of the argument.
Discovered in 1977 (Hoppel), Lyme disease is still a major threat to people. As one of “the fastest growing vector borne diseases in the country” (qtd in “Lyme Disease Study”), Lyme disease is a serious infectious disease. The debate as to the existence of chronic Lyme may never be resolved, but this cannot affect patient care. As long as there is no decision, patients suffering with chronic Lyme should have access to fair medical treatment, which includes insurance coverage and funding to research the cure. Just as it is the role of scientists to debate, it is the role of the government to defend the people, and in the case of chronic Lyme disease, bypassing IDSA’s guidelines does just that. Public demand for support can achieve this, but people and physicians must become aware of what is going on. If, “treating Lyme is a marathon” (Gebhart), then it is up to the public to demand support for those who are running in it.
Barbour, Alan. "Remains of Infection." Journal of Clinical Investigation. 2012. General OneFile. Web. 31 Mar. 2014. <http://go.galegroup.com>.
Closter, Linda, et al. "Long-term Lyme Disease Antibiotic Therapy Beliefs among New England Residents." Vector-Borne and Zoonotic Diseases. 2011. Academic OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.
Ferguson, Johanna. "Cure Unwanted? Exploring the Chronic Lyme Disease Controversy and Why Conflicts of Interest in Practice Guidelines May Be Guiding Us Down the Wrong Path." American Journal of Law & Medicine. Spring 2012. General OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>
Gebhart, Fred. "Compounding for Lyme Disease." Drug Topics. Dec. 2011. General OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.
Hoppel, Ann M. "The Lyme Wars: Debate Rages about Treatment." Clinician Reviews. Apr. 2008. General OneFile. Web. 31 Mar. 2014. <http://go.galegroup.com>.
Klotter, Jule. “Lyme Guidelines Still Unchanged.” Townsend Letter. Jul. 2010. General OneFile. Web. 31 Mar. 2014. <http://go.galegroup.com>.
Lantos, Paul M. "Chronic Lyme Disease: The Controversies and the Science." Expert Review of Anti-infective Therapy. 2011. Academic OneFile. Web. 2 Apr. 2014. <http://go.galegroup.com>.
"Lyme Disease Study Author Dr. Keith Berndtson Finds Need for New Guidelines for Treating Persistent Lyme Infection." PRWeb Newswire. 22 May 2013. Academic OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.
"Lyme Disease Test is Badly Flawed." Guelph Mercury. 15 Aug. 2011. General OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.
"NIH Research Planning - About NIH - National Institutes of Health (NIH)." U.S National Library of Medicine. U.S. National Library of Medicine, n.d. Web. 10 Apr. 2014. <http://www.nih.gov/about/researchplanning.htm>.
"Rep. Smith Holds Lyme Disease Hearing." Targeted News Service [TNS]. 18 Jul. 2012. General OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.
Rosner, Brian. "Chronic Lyme Disease: Real Disease or Medical Myth?" Townsend Letter. July 2009. General OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.
"Senator Blumenthal Continues Push for Lyme Disease Awareness and Prevention." New Haven Register. 22 Mar. 2014. General OneFile. Web. 31 Mar. 2014. <http://go.galegroup.com>.
"The Clinical Assessment, Treatment, and Prevention." IDSA Guidelines. Infectious Disease Society of America, n.d. Web. 28 Mar. 2014. <http://www.idsociety.org>.
Below are links to four other internet sites from teens who have Lyme disease. These brave girls are in the fight of their lives but still reaching out, sharing information, and leading the way so hopefully someday soon this disease is widely recognized and correctly treated. Sharing their stories gives them power, a voice, and tells other teens what's really going on behind that kinda-healthy-looking facade. It also lets others dealing with Lyme know how strangely similar their stories are, giving a sense of community, no matter how many miles between them.
Check out their stories and share.
*Also check out the Facebook group "Teens with Lyme" started and admin'd by Cassidy.https://facebook.com/groups/182999315180556/
Abby, in junior high, was given an assignment a few weeks ago to write about someone she admires. This is the essay. Abby is pretty awesome, too.