Christmas in the Big Apple

"I am writing to ask you a special favor. Would you like to be a photographer in an Indian newspaper? Now is the chance, but you must act quickly. It is 5 PM where I am, and by noon tomorrow I need a photo or two emailed to me showing a Christmas scene in the states. Please snap a photo on your camera/phone/whatever and email it to me sometime on your Sunday before you sleep, and by Tuesday in India your photo may be in the paper along with my story about Christmas".

That is an excerpt from an email that appeared in my inbox on December 23, 2012. I immediately sprang into action. Before you shake your head thinking I have become extremely gullible as I continue to battle Lyme disease, I would like to mention that this email was sent to me by my sister.  Dee Dee was in India working as an editor/reporter for a three month internship at the New Indian Express in Chennai and had been assigned to write about Christmas in the United States. My family doesn’t celebrate Christmas but that did not stop her from writing her story, nor did it stop me from riding around DC and taking photos of Christmas decorations, per her request. 

I had gotten so wiped out by my trip to the burbs of NYC for Thanksgiving to visit my parents, they decided to come down to DC for the holidays so I could rest and not add to my cloud of exhaustion with holiday travel. Mid-afternoon on the day after they arrived I insisted on taking them on a walking tour of my neighborhood even though my mom kept asking me if it was a good idea for me to be outside walking. It turned into a two hour plus walk in the crisp cool air. By the time we made it back to my condo I was limping and in need of a major nap. Four plus hours later my mom woke me up with a reminder that I needed to take my antibiotics and eat dinner. For the rest of the night I was groggy and complaining about my leg and back pain. The next day we were lounging around and enjoying each other’s company when the assignment from India rolled in. While I sat in the passenger seat of my car taking photos, my mother sat in the back battling motion sickness while claiming my dad was driving like an animal. Deep down I think she enjoyed our wonderful driving tour around town which enabled me to capture the holiday spirit in a series of photographs that I sent off to my sister. Dee Dee loved the photos and wrote me back telling me that she was using the one of the Capitol in her article and I was going to get photo credit. 

As the story goes, when my sister left work on Christmas Eve, they were still laying out the December 25, 2012 edition of the New Indian Express. On the front page of the Chennai "City Express" section her article along with my photo was above the fold. The next day when she saw the paper a different Christmas story had been published accompanied by my photo; without photo credit. The caption (pictured in blue) below my photo is language they pulled from my sister's article about Christmas that was not published. It reads: BIG APPLE IS ICONIC SYMBOL OF X'MAS - In the United States, New York City has become the iconic symbol of Christmas. Thousands of people visit Manhattan daily from November through early January, hoping to catch glimpses of the ornately decorated Christmas windows on 5th Avenue". 

My photo of the Capitol labeled as New York City provided me a much needed laugh as 2012 was coming to an end. So there you have it; I am now an uncredited published photographer in India! If you would like my autograph, it can be arranged. 

A Hazy Shade of Fall and Winter

Runners and missing toenails go together like peanut butter and jelly; the longer the distance the more likely you are to have a toenail casualty. Back in my running days shedding toenails was a frequent occurrence which often led me to paint the nail bed where my nail used to be in order to give off the impression that I had ten toenails. In fact I was thinking of writing a book called “If I only have 7.5 toenails, can I get a pedicure discount”? I never got further than the title, but it did elicit laughter from those I mentioned it to. September of 2011 is the last time I was able to run. Imagine my surprise when in January of 2013 I took my shoes off one night and discovered that one of my big toenails was dead and partially separated from my nail bed. I removed it myself with a nail clipper, and it didn’t even hurt. Upon closer inspection of all of my toe nails I realized a few of my other nails were well on their way towards needing "medical attention". 

Fatigue is a common symptom experienced by Lyme disease patients; it can be prolonged and very debilitating. The fatigue can be accompanied by either excessive sleeping or insomnia. Some patients may experience the fatigue intermittently or after exertion, while others may be bedridden.  Since my treatment has started I have experienced both excessive sleeping and insomnia. I haven’t been bedridden for weeks or months at a time, but there have been a handful of days when I haven’t been able to muster the energy to get out of bed.

This past fall and winter I was blaming the cold, damp weather for my increased achiness and fatigue. As it turns out, the weather wasn’t the only thing that was working against me and my already annoying enough Lyme symptoms. During a visit to my doctor in January to review my blood work and discuss my on-going treatment and symptoms I learned about Candidiasis. Candidiasis is a fungal infection caused by yeasts that belong to the genus Candida. There are over 20 species of Candida yeasts that can cause infection in humans, the most common of which is Candida albicans. Candida yeasts normally live on the skin and mucous membranes without causing infection; however, overgrowth of these organisms can cause symptoms to develop. Symptoms of candidiasis vary depending on the area of the body that is infected. 

In layman terms this means I was diagnosed with a systemic yeast infection. Yes, it is about as exciting as it sounds. My toenails were a causality of the candida. Factors including stress, poor diet, a suppressed or compromised immune system, toxicity and the extended use of antibiotics, alcohol and steroids can lead to a candida infection in both men and women; my compromised immune system and extended use of antibiotics are what led to my infection. Hilariously enough, I started taking another antibiotic to combat it. There are a host of symptoms that come along with Candida overgrowth that affect your nervous system, digestive system, skin, eyes, hair, etc. Fatigue, muscle and joint pain and irritability are just a few of the issues someone with a Candida infection may experience. My Candida infection is under control for now, but it is my understanding that I won’t be able to get rid of it completely until I am healthy again and not on any antibiotics. Click here to learn more about Candida. As it turns out, my strict Lyme disease diet is a natural way for me to battle the Candida.

But wait, there is more. My blood work also showed that my Vitamin D had taken a dip. My doctor told me it could be one of two things:  Seasonal Affective Disorder (SAD) or my body having trouble absorbing Vitamin D due to my on-going treatment; both result in fatigue. Judging by a notable change in my fatigue ever since the days have gotten longer, I would venture to guess that winter made me SAD. I’ll get the medical answer at the end of the month at my next appointment. 

It was a perfect storm of Lyme, Candida, Vitamin D deficiency and the weather that increased my discomfort throughout the fall and winter. With no end date in sight regarding my recovery I must admit that sometimes it gets tough to just grin and bear it. Lucky for me on a lazy Sunday afternoon in late November a plan to kick off the spring with some fun in the desert sun was hatched. It gave me something to look forward to while I was feeling very crappy. Rachael and I had fallen behind on season 3 of "Ice Loves Coco" and were in the middle of watching four episodes back-to-back when Coco announced on the show that she had been asked to headline "Peepshow" for a limited amount of time while the current star was on maternity leave. "Peepshow" is billed as Las Vegas' only striptease spectacular. Within a matter of days I had roped my friend Marisa who lives in Arizona into joining us in March for a girls weekend. Marisa had no idea who Coco was when she agreed to come to Vegas to hang out with us and see the show. If you don't know who she is either you can always look her up on the internet --NSFW. Planning the trip and looking forward to some fun in the sun with my friends was just what I needed to help me push through my annoying set back. 

Lucky Dog

Meet Oz. He resides with my parents. He is very intellectual. He is a great swimmer (runs in the family). He sheds a lot. If you turn your back on him at the beach he’ll eat as many dead fish as he can before he is yanked away from the seafood buffet. He gets upset when you sit in “his” spot on the couch. He is not named after Ozzy Osbourne or the Wizard, he is named after Oswald State Penitentiary. He makes friends everywhere he goes. He has been vaccinated for Lyme disease.

Wait… what?

Yes, vaccinated for Lyme disease. Man’s best friend can be vaccinated for Lyme disease, but man can’t. 

You can read more about that here: http://www.wbur.org/2012/06/27/lyme-vaccine

Ripped from the Headlines

I am a huge fan of baseball and the NY Yankees. But today I am turning my attention to Tom Seaver and that other NY team... The Mets. For you non-baseball fans, Tom Seaver is a legendary pitcher whose career spanned 19 years. He played for four different teams but his time with the NY Mets is the most noted.  He was elected into the Baseball Hall of Fame in 1992 with 98.8 % of the vote; the highest voting percentage ever. He and his wife own a vineyard in Napa that produces Cabernet Sauvignon in limited production (between 400-500 cases per year). Tom Seaver has Lyme disease and he recently spoke out about his battle. 

Click here to read an article that ran in the Daily News on March 15, 2013.

Click here for another article about Tom Seaver, where he is applauded for speaking out about his struggle with Lyme disease. 

Directly beneath the headline in the first article I linked to about Tom it reads: “It’s been a living hell of uncertainty, confusion, depression and downright fear". You hear this a lot when you speak with patients about Lyme disease, but for the most part it is spoken to each other in support groups and not written about in a national newspaper. It is a big deal that he chose to speak out about it, as evidenced by the second article I linked to which stated: “Tom Seaver continues to show his greatness and courage off the field as he did as one of the greatest pitchers in baseball history,” said David Roth, co-chairman of the Tick-Borne Disease Alliance. “Thousands suffer from Lyme and other tick-borne diseases around the country and are afraid to tell family, friends or co-workers about their suffering because of the stigma attached to these devastating diseases. Tom Seaver has demonstrated that being open about tick-borne diseases is the critical first step to raising awareness as well as government and public support for research to eradicate these terrible illnesses. Everyone at TBDA wishes Tom Seaver and his family well during his recovery from Lyme.”

And now a smooth transition from baseball to "The Real Housewives of Beverly Hills" 

I have never watched RHOBH, but a few months ago a friend of mine who is an avid fan of the show mentioned to me that Yolanda Foster, one of the women featured on the show, had been diagnosed with chronic Lyme disease and was openly discussing her experience. I did some research on her, and I am now a huge fan. She has a large on-line presence and interacts with all of her followers and fellow "Lyme Warriors". She recently received the Star Light Award from the Lyme Research Alliance (LRA). She was selected for the honor because she has spoken openly about her struggle with chronic Lyme disease and her strenuous treatment. Click here to view the speech she made at the LRA "Time for Lyme" Gala. It just shy of twelve minutes, but it is a very moving speech which gives a glimpse into the struggle that so many chronic Lyme disease patients go through. If you would like to know more about The LRA and their event, here is the full press release. 

I haven't been shy about discussing my experience with chronic Lyme disease, but it appears I am running against the norm. I do not have the social clout of Tom or Yolanda, so I am appreciative that they have chosen to share their stories as part of the effort to bring more awareness to a disease which is literally in our backyards. I hope this type of advocacy on behalf of Lyme disease patients eventually leads to more support for the research which will ultimately produce clearer guidelines for diagnosing and treating the disease. 

CliffsNotes

Leading up to my diagnosis (the abridged version): 
March 2011: I awoke with a fever and a mysterious traveling rash that moved around my face and neck for about a week and then vanished; the source was never discovered.

Spring and Summer: A spike in joint and muscular aches/pains was easily explained away by my constant training for triathlons; which I continued to participate in despite my body being cranky and suggesting I slow down.

Late August:  I lost feeling in my hands and feet, along with some cognitive function.  My short term memory and ability to focus were also severely impaired.

Early September: Blurry vision was added to the mix. I made an appointment to get a physical. I explained my symptoms to the physician as well as the fact that I had previously been treated for Lyme disease in 1994 and was 100% certain I had it again; the vision and memory issues were what plagued me the first time. A good amount of blood was drawn, and I was tested for everything under the sun. All of my blood work came back negative or normal. I was told I was in good health.

Late November: I visited a different physician (it took me awhile to get an appointment) who began treating me on the spot.  The symptoms l outlined during our first meeting, coupled with a “barely positive” Lyme disease test from November of 2009 that was in my medical records I was asked to collect prior to my first appointment, left this doctor with zero doubt that I had Lyme disease. This was also the first time the results of my Lyme disease test from 2009 were discussed with me. 

Mid-December: During my return visit to the doctor to discuss my blood work I learned that in addition to treatment for Lyme disease I was going to be treated for 3 other tick-borne infections; Babesia, Bartonella and Mycoplasma.

Medication

Seventeen months and counting… my treatment shall remain on-going until I am symptom free. I have been on as many as seven antibiotics at one time. Currently I am on five.  I have been on up to 21 supplements per day; currently I am on about 18. I get blood work done every 8-10 weeks to make sure my organs are functioning properly, as well as other random tests that are important markers for my Lyme disease battle. My symptoms ebb and flow with antibiotic changes, dosage adjustments, physical exertion and bad food choices. 

That’s News to Me!

My current Lyme disease experience has been very different from my first experience in 1994 when I was treated for a month with IV antibiotics and told I was cured. Here are a few things I have learned since my chronic Lyme disease diagnosis:

• There is a deep division in the medical community over whether there is such a thing as “chronic Lyme disease” and there’s an ongoing debate over how to help/treat people who suffer from long-term effects of Lyme.
• Lyme Literate Doctor’s (LLMD): Due to the issues with the Lyme disease testing that I have documented throughout my blog it is sometimes necessary to seek out a physician with the expertise to consider clinical symptoms in addition to blood tests to get treatment for Lyme disease.
•  Insurance companies do not cover the majority of treatment provided by LLMD’s, because  LLMD's  treat their patients for a disease that is not acknowledged as a disease by the NIH, CDC, WHO, etc.
• Co-infections: I had no idea there were other tick-borne infections one could catch from deer-ticks until the day I was diagnosed with three of them.
• I had never heard of, let along experienced a Jarisch-Herxheimer Reaction (Herx), until two months into my treatment. I wish I was still in the dark about them. They are very unpleasant and of course do not come without controversy.
• Certain foods can effect illness and injury

About that testing

What is a barely positive Lyme disease test anyway? I don’t remember the explanation, but I will be sure to ask my doctor to explain it to me the next time I see him. Hey, cut me some slack, I was in bad shape the first couple of times I went to his office for my appointments.  

… Now back to the point of this post!

"Antiscience and ethical concerns associated with the advocacy of Lyme disease”; the article that I shared in my previous post was written from a point of view that I have trouble understanding since my life has totally been changed by chronic Lyme disease. The article reflects the degree of hostility toward chronic Lyme disease patients, the physicians who treat them, as well as the Lyme charities that were formed in order to support education and research on behalf of the patients. There are numerous Lyme disease non-profit organizations, some of them not as informed as others. The article says that they are all well-intentioned, but ignorant and ill-informed; that is not an accurate portrayal. Many of the charities have established medical and scientific advisory boards to advise their organization. Casting a wide net to discredit research on Lyme disease because some of it has been partially funded by Lyme disease charities is disturbing. These types of efforts have led some researchers to initially submit research studies and not list all of the funding sources because they find that when presenting findings to government officials or other scientists, there has been more interest in the funding sources than the actual research itself.

Previously I mentioned that a discussion regarding this article during the Lyme disease hearing on Capitol Hill that I attended led me to read it.  In the article the authors stated that the public’s health will be endangered “unless responsible physicians, scientists, government leaders, and the media firmly stand up for an evidence-based approach to this infection that is based on high-quality scientific studies.”  And now to paraphrase Congressman Smith's remarks regarding this statement from the hearing: In fact, this is exactly what the Lyme community wants; however, it will be necessary for the physicians, scientists, government leaders, and media to show good judgment – to evaluate the evidence to see if it is based on the best science and to scrutinize the studies and the critiques of those studies to determine whether they are of high quality. Scientists who represent both sides of the debate need to be able to speak without restriction about what their studies have found.  Government agencies need to show leadership and to forcefully say what is known and what is not known, based on the best available evidence. 

Within the last month I’ve experienced a minor set-back with one of my co-infections; I’ll get to that eventually in the coming weeks. In the meantime while I get treated for chronic Lyme disease, which is no picnic, I will continue to get frustrated by the Lyme disease debate. As the debate rages on the people who are suffering the most are the ones who can’t obtain diagnosis and treatment as their quality of life goes down hill, the doctors who are shunned from the medical community for believing in something that “defies science”,  and people like me who finally got diagnosed and are constantly being bombarded with negativity surrounding their treatment. 

The Other Point of View

An article that was published in September 2011 called “Antiscience and ethical concerns associated with the advocacy of Lyme disease” was mentioned by Congressman Smith during the Lyme disease hearing on Capitol Hill which I attended last year and wrote about this past February and March in this blog. He stated that the article reflected the degree of hostility toward patients, treating physicians and the Lyme charities that were formed to support education and research on behalf of chronic Lyme disease patients. He also posed the question, "wouldn’t it be much better if instead of belittling, insulting, and smearing patients, treating physicians and advocates, the authors of that study had asked themselves and posed the question to others, what can we do to better understand and address the needs and concerns of patients, physicians and advocates.”?

Here is a quick refresher about Lyme Literate Doctor's (LLMD) from my November 7 post titled “I’m Going To Need A Bigger Pill Box”.

“A physician with the expertise to consider clinical symptoms in addition to blood tests may be preferable to one who relies solely on blood results. Many LLMDs will treat suspected chronic Lyme cases with antibiotics even in the absence of the early symptoms the CDC requires and will track a patient’s symptomatic response to antibiotics known to mitigate the disease. Long-term treatment with higher doses of antibiotics is the norm while getting treated for chronic Lyme by an LLMD. Due to the political controversy and legal challenges facing Lyme doctors, most of them prefer to keep a low profile, and for this reason can be difficult to find. Most accept new patients only by referral from one of the Lyme disease patient support associations or from other Lyme patients”.

Click here for the article. It is four and a half pages and quite an alarming read; especially for somebody who is about to start month 17 of treatment for chronic Lyme disease. The stark contrast between the testimony I summarized from the Lyme disease hearing and the information discussed in this article really highlights the polarizing views in the on-going chronic Lyme debate. 

More on this next time. 

Thirty Five Shades of Brown

Spoiler Alert: This is not an erotic romance story with explicit scenes featuring bondage and dominance.

Mid-May 2012

“Julie, where have you been getting your evening sun in this weather” asked my colleague Brian as day three of steady rain could be heard pelting the office windows that were nowhere near either of our cubes. I turned away from my computer to face him and asked “Do I look like I am getting a tan”? And he said, “Yes, every day this week you have come into the office a shade darker than the last, and I want to know your secret”. 

A few days earlier... 

While volunteering at a triathlon, I spent a couple of hours outside in the early morning sun wearing long pants and a tank top. I thought my eyes were playing tricks on me the next day when I woke up with what appeared to be an even tan all over my body.

A Brief History of My Relationship with the Sun

After a day spent in the sun I usually look like a streaky lobster.  The streaks come from my inability to evenly apply sunscreen; my ability to burn was inherited from my dad. An evenly bronzed tan has never been a part of my repertoire. 

I immediately panicked after the conversation I had with Brian and called my doctor thinking that my liver was failing. I don’t want you to think that I jumped to the “oh my God my liver is failing, I must be jaundiced” conclusion lightly. My relationship with the sun detailed above, coupled with the fact I was on seven antibiotics, and scores of supplements, made me fear the worst when my skin color started to change. Lucky for me I had just been to the lab to get blood drawn and my doctor was able to assure me right away that my liver and kidney functions were fine. It turned out that I was having a reaction to Minocycline; one of the antibiotics I was on. My doctor told me to discontinue taking it, and that my reaction which was triggered by a couple of hours of sun exposure wouldn’t be permanent. 

Every morning, throughout the summer, I woke up a different shade of brown, regardless of whether I was spending time in the sun or not. Even fifteen minutes outdoors during lunch made me noticeably darker. How dark did I get? The men who congregate on the street corner by my house started yelling dirty things to me in Spanish instead of English when I walked by. I relish all opportunities to practice the small amount of Spanish I remember from high school. 

One late afternoon after lounging poolside for most of the day, I met up with my friend Megan who told me I had a purplish hue to my skin tone. I laughed at her and told her she was seeing things. An hour later another person who had not heard our conversation mentioned the same thing to me. As July rolled around and the weather in DC got too hot for my liking, I chose to stay indoors to avoid the sweltering heat and to avoid turning purple. I slowly began to fade. Slowly being the operative word; at some point in October I returned to my usual pale white color. 

I avoided the camera for most of the summer, but lucky for you guys this awesome picture was captured of me in late August, a month and a half after I had stopped hanging out in the sun. You’re probably wondering how somebody who doesn’t own a cat could find themselves in a situation where they would be dressed like this changing kitty litter. Don’t worry about that, it has nothing to do with the story. The point of this picture is to show you how tan I was.

One other interesting thing happened when I stopped taking the Minocycline. A myriad of symptoms that had subsided during the first seven months of treatment popped back up. Turns out it was one of the most effective antibiotics I was taking. My doctor allowed me to start taking a smaller dosage of the Minocycline again this past October after a five month break. Last weekend I had the chance to soak up some sun while sitting poolside in Vegas. No sunburn for me, and I swear I may be a little tanner today than I was yesterday... 

Gridlock On Capitol Hill - Part III

Political gridlock on Capitol Hill has been dominating the news lately. Take a break from the sequestration coverage and check out what the last three witnesses had to say at the hearing on the global challenges of Lyme disease. 

Mark Eshoo

Dr. Eshoo, the head of new technology at the IBIS Biosciences Division of Abbott Laboratories, spoke about the need for developing better diagnostics for Lyme disease and other tickborne co-infections. He described how Lyme disease becomes chronic in mice by evading the immune system by attacking the skin, the joints and the nervous system. This led into a discussion about the best time to treat Lyme disease being early on, but like I have mentioned previously, Lyme disease is often misdiagnosed as something else if a bullseye rash isn't present. It can take up to three weeks or more after a body has been infected with Lyme disease to build up antibodies to test positive during a Lyme test. Yes, you could end up with a negative Lyme test if you get tested too early after infection. Dr. Eshoo discussed how the IBIS division at the Lab he works at is working to improve the sensitivity of Lyme testing and to make a test that can directly detect the Lyme disease-causing bacteria instead of relying on testing for antibodies against the bacteria.

Two other areas he discussed were the demand for more research on variations in the Lyme disease bacteria and the need to find out why symptoms don’t resolve following treatment in some patients.

Interesting fact from Dr. Eshoo: Babesiosis, the disease caused by Babesia, is frequently mistaken for malaria in many parts of the world. I don’t like to brag, but Babesia is one of the co-infections I am getting treated for!

Evan White

Evan White delivered his testimony via Skype from New York City. He has been an advocate for Lyme disease for 20 years, born out of his unfortunate case of chronic Lyme disease. His story is a real-life case study that illustrates the point that in some cases short-term antibiotic treatment can be devastating and that long-term treatment can reverse the effects. He started off his testimony by stating the following: “Today I am a father, husband, practicing attorney, business owner, employer, and advocate for the rights of Lyme disease patients. Now, I mention that to illustrate a point, not to be boastful. My point is that were it not for long-term treatment by a careful and conscientious Lyme physician, none of this would be possible”. 

Evan was 11 years old, when he missed several days of school due to flulike symptoms. His physician diagnosed him properly with Lyme disease and he was put on a two-week course of antibiotics. The doctor’s response to him not recovering after 2 weeks of antibiotics was one that is very common and unfortunate in the Lyme community; he recommended physical therapy and psychological therapy. Evan was taken off of the medication and his situation deteriorated as he was transformed from an active, healthy, athletic child to one that could no longer care for himself. His doctors were surprised that Lyme disease and other co-infections were still present in his blood after further testing. Meanwhile his weight dropped to about sixty pounds, he experienced muscle atrophy and neurological defects. He said, for lack of a better term by age 13 he was essentially a vegetable. The doctors were baffled by his condition and their solution was to place him full time in children’s rehabilitation care. It was there that they gave him a brain scan that showed the Lyme disease had penetrated the blood brain barrier and caused hypoperfusion (decreased blood flow) in his brain. It offered insight into why he could no longer perform basic tasks like reading, talking and communication. The doctors were still confused about his condition and had no idea what he was suffering from and why. After two years bouncing from hospital to hospital and 6 months in the children’s institution he was sent home to receive outpatient therapy. His parents arranged an appointment with a prominent Lyme disease physician and he began a two year treatment with antibiotics, supplements and therapy. He eventually recovered, but it was a long and slow process that required hard work and support from his family and his doctor. 

Evan believes that the net effect of the current guidelines that are out there restricting treatment of Lyme disease patients ultimately deprives so many who suffer as he did, from the opportunity to have the healthcare option to seek long-term treatment that is effective, that is proven, and that has worked in allowing him and others to achieve normal, fulfilling, pain-free lives.

Ms. Stella Huyshe-Shires

The United Kingdom has suffered under a contentious environment among different Lyme disease stakeholders very much like that of the US; however the UK is making progress in developing a more cooperative environment. Stella Huyshe-Shires, the Chairman of Lyme Disease Action, in the UK, delivered her testimony via phone from her home.

Lyme disease Action is a non-profit organization striving to improve the understanding of Lyme disease in the UK on behalf of doctors, patients, careers, employers and healthcare providers. Lyme Disease Action is accredited to the UK Department of Health Information Standard; meaning that their information management processes have been verified to make correct, unbiased use of sources of evidence.

There is disagreement on the incidence of European Lyme disease and the possible scale of the problem. Europe is affected by the polarization of the view concerning Lyme disease that has arisen from the Infectious Diseases Society of America (IDSA)/International Lyme and Associated Diseases Society (ILADS) controversy. Health professionals usually claim that Lyme disease is over-diagnosed, but members of the public say Lyme disease is under-diagnosed. Why is Lyme disease difficult to diagnose and what can be done about it? Stella stated that diseases that are rare and difficult take doctors’ time and effort. They need unequivocal tests and clear guidelines. Unfortunately neither of those exist in the UK for Lyme disease. 

The former head of the Health Protection Agency laboratory, an independent body that protects the health and well-being of the population in the UK, served as a consultant to the IDSA panel in the development of 2006 guidelines for Lyme disease, so it is understandable that the views of the IDSA have prevailed in the UK. A small number of UK microbiologists have drawn up, under the British Infection Association, a position paper on Lyme disease. Despite its biased view of the literature, it is used by professionals to support the view that Lyme disease can be definitively diagnosed by serology and does not persist after recommended treatment. Unfortunately, European research shows otherwise.

Lyme Disease Action has started a process, mediated by the James Lind Alliance, which involves documenting doctors' and patients' uncertainties. To engage doctors in this process has been taxing and only achievable because the British Infection Association, following Lyme Disease Actions criticism of their paper, realized that input was important. The collective uncertainties are now being examined against the published literature and systematic reviews, and will result in a list of true uncertainties. The biggest challenge they face is the recognition and agreement on the uncertainties. [This cooperative approach contrasts with the environment in the U.S. A recommendation regarding Lyme disease made during a May 2005 meeting of CDC’s National Center for Infectious Diseases Board of Scientific Counselors, attended by the then President of the IDSA, that CDC should focus on science and not on the concerns of patient groups and that others may need to step in to assist CDC with public interface].

Earlier this year members of Lyme Disease Action attended the European Congress of Clinical Microbiology and Infectious Diseases in London. Discussions with a lot of international delegates were revealing. Northern European doctors face similar problems to the UK, with doctors relying heavily on test results. In Central Europe, where incidence of Lyme disease is far higher, Lyme is a big problem, and the doctor’s stated that they don't have good enough tests, and they don't know how to treat it.

Stella concluded her testimony by stating: “To us here there seem to be two principle aspects to the Lyme disease problem: Politics and the uncertainties of the science. The politics drives patients to seek care away from the UK National Health Service, which is failing them. And it is politics which is preventing recognition of the uncertainties. Politics, prestige, and defense of positions should not obstruct patient care nor hamper the search for understanding”.

--

And that concludes the summary of what I heard and learned at the hearing. In my first post about the hearing I mentioned that representatives from the NIH, CDC and IDSA declined to attend. IDSA did submit written testimony to the Lyme subcommittee. As I’ve just begun my sixteenth month of treatment for chronic Lyme I find this response frustrating and close-minded. You can check it out here.