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. 

Gridlock on Capitol Hill - Part II

There were six witnesses who testified at the hearing. In part II of my Lyme disease hearing coverage I’ll share summaries of what the first three witnesses listed below testified. Yes, this is turning into a three part post. The digital age has broadened our horizons in almost every aspect of life, while also shortening our attention spans. I do not want to present an epic post that would cause your lovely eyes to glaze over and lose interest in my quest to arm you with Lyme-knowledge.

Witnesses:

• Patricia Smith, President of the Lyme Disease Association
• Stephen W. Barthold, Ph.D., Distinguished Professor of the Dept. of Pathology, Microbiology and Immunology Center of Comparative Medicine, School of Veterinary Medicine at the Univ. of California
• Raphael Stricker, M.D., Vice President of the International Lyme and Associated Diseases Society
• Mark Eshoo, Ph.D. Director, New Technology Development, Abbott Laboratories
• Evan White, Lyme disease Patient
• Ms. Stella Huyshe-Shires, Chair, Lyme Disease Action

Patricia Smith

Patricia Smith has traveled the country for the past 20 years listening to patients, scientists, doctors and government officials discuss Lyme disease. Her testimony was full of jaw-dropping information, and is available here in written form. It is two pages long and worth the read as it shows the effect that the controversy surrounding Lyme disease has on patients and their families. 

Patricia Smith referred to Lyme disease as a medical and political debacle. She stated that many doctors refuse to diagnose outside certain limited federal criteria and subsequently insurance companies can refuse to pay for care. She also lamented the fact that thirty-seven years after Lyme was recognized, sick patients cannot get diagnosed and not be treated because of antiquated, unsubstantiated tests which may pick up 50 percent of cases.

Stephen W. Barthold

Dr. Barthold has been researching Lyme disease for 25 years in animal model systems, with funding provided by NIH. One of the things that has intrigued him the most is the fact that Borrelia persists in its immunologically competent hosts as the rule, not the norm, thus proving that persistence is part of its biological behavior. This has been shown in 100 percent of mice, rats, hamsters, guinea pigs, gerbils, dogs, and nonhuman primates--two different species of nonhuman primates. He explained that when you have an organism that is a professional at persisting and evading host immune clearance, you have a problem when you approach it with antibiotics. The antibiotics are likely to fail under some circumstances, if not many circumstances.  By stating these facts gathered through his research, Dr. Barthold finds himself in a rather unique spot. He started in the mainstream of Lyme disease research and is now considered somewhat of a pariah, in terms of the established medical opinion.

Dr. Barthold’s studies in animal models have found that early treatment during the pre-immune phase of the infection can cure the animals. But during persistent infection, (advanced Lyme disease)100 percent of the animals remain persistently infected after antibiotic treatment. This has been described in a number of different laboratories: One in Finland, one in New York, one in Louisiana, and one in Connecticut. It has been described in mice, in dogs, in nonhuman primates. It has been described with a number of different antibiotics, including ceftriaxone, doxycycline, tigecycline, amoxicillin, azithromycin. In his written testimony, Dr. Barthold included some unpublished data, which will hopefully will get published in the next year or so, that shows after a 12 month Lyme disease treatment of mice they saw a resurgence of spirochetes in very large numbers, equivalent to numbers of wild-type infection in which the animals had not been treated with antibiotics. “The significance of continued infection indeed needs to be better understood, it is time to recognize that Lyme disease is not a simple bacterial infection”. He also mentioned that researchers follow the money and that if enough incentives were given, there would be more research done. He underscored that people on both sides of the issue are “good” people but that they just look at the issue from a different perspective

Raphael Stricker

The International Lyme and Associated Diseases Society (ILADS) point of view was represented by Dr. Stricker. He emphasized the fact that the Infectious Diseases Society of America (IDSA) clinical guidelines only address the immediate bite. [Julie’s Commentary: For people like me who never saw a tick on their being, let alone knew they were bitten, these guidelines are useless]. He also stressed the need for national protection for doctors who treat chronic Lyme disease and better diagnostics from NIH. He urged the group to look at the evidence of persistence infection from Borrelia burgdorferi (Bb).

Dr. Stricker is a practicing physician in San Francisco with a specialty in internal medicine and he currently has 2,000 Lyme disease patients. He treats patients from Canada to Costa Rica, from Great Britain to Brunei, and from Germany to Japan. Many of these patients have been ill for years and have been unable to find a medical provider who can diagnose and treat them for Lyme disease. Dr. Stricker stated that in spite of the fact that the disease is so common, medical providers are often ignorant about how to diagnose and treat Lyme disease. There are a number of reasons for this ignorance:

• The telltale bullseye rash that is a classic sign of Lyme disease may be absent in more than half of Lyme disease patients
• Patients are often unaware of a tick bite, in many parts of the world the black legged tick that transmit Lyme disease may be no larger than a poppy seed
• Lyme disease has a wide range of symptoms, and physicians are often unaware of the various manifestations of the disease
• Testing for Lyme disease remains problematic. Most laboratories around the world use tests that are unstandardized and insensitive; these tests give negative results in about half the cases of Lyme disease
• Treatment for Lyme disease has evolved in a haphazard fashion; the “standard of care” put forth by specialty medical organizations such as the IDSA only address acute infection immediately following a tick bite. The IDSA standard ignores the more common and severe chronic form of Lyme disease.

To Be Continued...

Gridlock on Capitol Hill

On July 17, 2012 Lyme experts testified at the first-ever Congressional Hearing on the global challenges of Lyme disease.  The vast majority of committee hearings are open to the public, so I took advantage of the fact that I live in Washington, DC and attended the hearing. This was the first time Congress had looked at the global implications of Lyme disease and chronic Lyme disease with a focus on science and putting patients first. Witnesses gave testimony about how policies and actions by government agencies such as CDC, NIH and the Infectious Diseases Society of America (IDSA) have hindered research on chronic Lyme disease in turn hindering patient diagnosis and treatment. Solid science was presented for the record showing persistence of Lyme disease in animal studies, and cutting-edge testing for Lyme was examined. Viewpoints from a treating physician, advocate and patient were finally able to become part of public record.

Sounds pretty cool huh?

“As I have met scores of patients suffering the devastating effects of Chronic Lyme—who only got well after aggressive treatment by a Lyme-literate physician—I have been dismayed and angered by the unwillingness of some to take a fresh, comprehensive look at this insidious disease,” said Chris Smith, who co-chairs the House Lyme Disease Caucus. “It will be necessary for the physicians, scientists, government leaders, and media to be discerning – 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.  We need scientists to speak out in an unfettered way.  We need government agencies to show leadership and to forcefully say what we know and what we don’t know based on the best available evidence.”

The hearing turned out to be an eye opening experience. I went home that evening realizing that the chronic Lyme disease diagnosis I had received thrust me into the middle of a controversy that is hindering forward progress on diagnosis and treatment, which of course is the opposite of what anybody who is currently being treated for chronic Lyme disease wants to hear.

Congressman Chris Smith of NJ, Chairman of the House congressional panel that oversees international global health issues ran the hearing. On May 5, 1998 he introduced a comprehensive, bipartisan Lyme Disease bill, H.R. 3795 Lyme Disease Initiative Act of 1998, which had at its core, the establishment of a task force—an advisory committee—to comprehensively investigate Lyme with at least four things in mind; detection, improved surveillance and reporting, accurate diagnosis and physician knowledge. He reintroduced the bill again in 1999, 2001, 2004, 2005, 2007, 2009 and 2011. The following comment he made during his opening remarks really stuck with me, and summarizes a huge issue with Lyme disease research and treatment: "In 1998 I also introduced a comprehensive law to combat Autism. Despite significant opposition in Congress and at NIH and CDC that paralleled the Lyme bill struggle, it became law in 2000. Last year I authored the Combating Autism Reauthorization Act of 2011 which was signed into law in the fall, with the support of NIH and CDC.  If only we had done the same with Lyme disease legislation in the late 90s, a missed decade on Lyme”.

A Summary of the Opening Remarks

In Europe, Lyme disease syndromes were described as early as 1883, and by the mid-1930s neurologic manifestations and the association with Ixodes ticks were recognized and known as tick-borne meningoencephalitis. In the United States, Lyme disease was not recognized until the early 1970s, when a statistically improbable cluster of pediatric arthritis occurred in the region around Lyme, Connecticut. In 1981, Dr. Willy Burgdorfer, an NIH researcher at the Rocky Mountain Laboratories, identified the spiral-shaped bacteria (or spirochetes) causing Lyme disease and made the connection to the deer or black-legged tick, Ixodes scapularis.

Lyme disease is the most common vector-borne illness in the U.S. and is also endemic in parts of Europe and Asia, and recently has been confirmed to be endemic in the Amazon region of Brazil. In Europe, the highest rates are in Eastern and Central Europe. Recent surveillance studies have described growing problems in Australia and Canada. In the US, Lyme disease has been reported in 49 states and is most common in the northeastern and north central states, and in Northern California into Oregon. Over 30,000 confirmed cases were reported to the Centers for Disease Control and Prevention (CDC) in 2010, making it the 6th most common reportable disease in the US and the 2nd most reportable in the northeast. CDC has estimated that actual new cases may be 10 times more than the reported number,  indicating roughly 300,000 new cases in 2010 alone.

The “Lyme Wars”

Few diseases have aroused such a high level of emotion and controversy among the public, physicians, and researchers than Lyme disease. There are two distinct views of Lyme disease; each citing scientific evidence to support its claims, while outcomes research is limited and conflicting.

• View 1: Promoted by the Infectious Diseases Society of America (IDSA), is that the disease is “hard to catch and easy to cure” and denies the existence of chronic Lyme disease or persistent infection with the Lyme bacteria. Any treatment other than a short course of antibiotics is considered too risky. Patients’ who do not fit the paradigm may have few options outside of psychiatric evaluation.
• View 2: Promoted by the International Lyme and Associated Diseases Society (ILADS) and also by numerous academic researchers in the US and around the globe, is that the science is too unsettled to be definitive and there can be one or more causes of persistent symptoms after initial treatment in an individual who has been infected with the agent of Lyme disease. These causes include the possibility of persistent infection, or a post-infectious process, or a combination of both.

Three areas central to the controversy are: the quality of diagnostics, post-treatment persistence of Borrelia, and available treatment options in light of clinical guidelines.

DIAGNOSTICS

Current diagnostic tests commonly used do not detect the spirochete that causes Lyme disease, rather, they detect whether the patient has developed antibodies to the pathogen (serological testing). CDC recommends two-tier serological testing, but cautions that the 2-tier system should be used only for surveillance purposes and not for diagnosis. Part of the difficulty in clinically managing suspected Lyme disease is that the CDC protocol is frequently not only used, but required for diagnosis.

PERSISTENCE

IDSA has repeatedly stated that there is no “convincing” evidence that the Lyme Borrelia persists after standard antibiotic treatment. However, there are numerous documented case studies of persistence in humans after antibiotic treatment. Studies have been conducted of the mechanisms by which Borrelia may evade the immune system and antibiotics. Studies have suggested that resistance to antibiotics might be due to formation of different morphological forms of B. burgdorferi, including cell wall deficient forms and biofilm-like colonies. Research also indicates that Borrelia can exchange genetic material, possibly contributing to its ability to avoid detection by the immune system.

TREATMENT GUIDELINES

The final major area of controversy is the significance of the IDSA’s treatment guidelines which directly impact patients and their ability to get treatment. Guidelines should be developed based on the best science, and there has been extreme controversy regarding the restrictive nature of the IDSA guidelines. The guidelines do not allow for the possibility of chronic infection and severely limit physician discretion on treating the disease. Supporters of the IDSA guidelines point to dangers of the prolonged use of antibiotics and the possibility of treating when an infection has not been established. IDSA and supporters place heavy weight on certain clinical trials of Lyme treatments supported by NIH. There has been much controversy of the quality of those trials and their generalizability to broad populations of patients. It is disturbing to the lay bystander that the controversy has ensued for so long without resolution. Certainly there are numerous unknowns about the bacteria and the disease; however, the public questions why the “experts” can’t even agree on whether these small numbers of clinical trials are well designed, well executed, and of sufficient power (whether they have a large enough number of patients), and the degree to which they can be generalized to other patient populations.

Congressman Smith ended his opening remarks by announcing the following: “I am looking forward to hearing the valuable perspectives that each of our witnesses brings to this hearing. I regret that, today, we will not be hearing from NIH, CDC, or a representative from the IDSA. They all were invited, but declined, the IDSA expressing that their potential witness had a scheduling conflict. I will reissue an invitation to them, and expect they will testify before our subcommittee”.

Old Man Winter is Kicking My Ass

It is not writer's block that has kept me from delivering the next installment of my Lyme disease journey, it’s exhaustion mixed with increased achiness and a side of grumpiness. It turns out that cold, damp weather exacerbates my symptoms. The roller coaster winter we are experiencing is zapping me of my energy. It is also making the rusty feeling in my joints worse. If you live near me there is no need to tune into the weather channel, contact me and based on the intensity of my joint and muscular pain, I will provide you with the most accurate forecast in town! 

I love winter. In fact I am usually annoyed by the lack of snow in the DC area. Right now I am thankful for the fact that the big blizzard forecast for this weekend is way north of us. I probably wouldn't be able to get out of bed if that storm hit here. Speaking of getting out of bed, I have written a haiku that I hope captures the grace of my morning ritual when it is cold and damp outside. 

Thump

Slide to side of bed, 
cascading over the edge.

Wow, the floor is hard. 

One Strange Trip

Early Morning - May 9, 2012 

I was at happy hour. It was loud and the location seemed familiar, but judging by the look on my face I was confused as to why I was there. I was focused on the crowd. I thought I kept seeing my friends in the distance but as I moved closer to them they morphed into strangers. I grew increasingly frustrated and walked up a long staircase. I found myself in a dimly lit room with an oak bar and large paintings on the wall. I was looking at a gaudy gold picture frame wondering where I could get one for my condo when I heard a deep voice say “Julie, I’ve been looking for you”. I turned around expecting to see one of my friends, and there was nobody there.  A large mirror hanging behind the bar drew my eye up to a missing ceiling tile. A scaly snake with large black diamonds along its back lowered itself down from the ceiling and looked at me. It flicked its tongue and said “You are not going to find anybody here that you are looking for”. I really wanted to run downstairs but instead I just stared at the talking snake and asked why it had been looking for me. The snake grinned at me and bared its huge cartoonish like dagger-shaped teeth. I was startled, but once again I didn’t move. I just watched the snake as it bobbed and weaved in the air above my head while it said “Why do you think I’ve been looking for you”? I didn’t answer because I wasn't sure why a talking snake would be looking for me. The snake, growing impatient with my silence announced, “Julie. I’m going to kill you”. It lunged through the empty ceiling tile while gnashing its teeth. I turned around to start running and then felt sharp pain in my knees. I loudly cursed my Lyme disease joint pain while frantically searching for the door to the stairwell that I had just walked up. The snakes laughter filled the room as I realized there was no door. As the snake lunged at me again I pulled a candlestick off of a shelf with the intention of beating the snake over the head with it, but I ended up watching myself exit the room as the shelf spun around like a secret door in a James Bond movie. I ended up in a brightly lit room with no furniture and no windows. A rumbling noise caused me to look up and I saw the whole ceiling retract and then hundreds of snakes with cartoonish teeth dove out of the ceiling at me. I woke up. I was curled up in the fetal position in my bed with horrible stabbing pain in my knees, and my heart was pounding. I tentatively reached my hand out to make sure there were no snakes in my bed. When I was sure my bed was snake free, I rolled over on my back and saw bright orange neon tarantulas crawling all over the ceiling. I catapulted myself out of my bed and turned on the light. There I was shivering and simultaneously dripping with sweat as I clutched the lamp in my bedroom while looking for signs of the neon orange tarantulas I had just caught sight of on my ceiling. I had a pounding headache, my leg was throbbing and my knees hurt. As everything started slowly coming into focus I blurted out to an empty room, “wow that was alarming, maybe I should take a shower’.

You’re probably thinking to yourself, how did Julie know the neon orange spiders on the ceiling were tarantulas? Trust me, I know my spiders. Every time I go to Arizona to visit Marisa I look for pictures of scorpions on the internet so I know what I have to kill if I see one in my vicinity. Google always suggests that I may be interested in tarantulas too. 

Evening - May 8, 2012 

Red meat is one of the foods I was told to avoid during my Lyme disease treatment, but that did not stop me from going to Charlie Palmer Steakhouse to celebrate Rachael’s birthday. I had been red meat free for six months before indulging in a steak dinner. I could have ordered fish, but I had no intention of ordering fish at a steakhouse. The food was outstanding. I devoured everything on my plate. In fact, if you live in the DC area I highly recommend you go eat there. 

Shortly after our dinner plates were cleared, I got the chills. There I was, teeth chattering, full of goose bumps wondering if they had turned on the air conditioning full blast. My speech slowed down and became slurred, and then I had a fit of uncontrollable laughter that lasted for at least five minutes, maybe longer. Rachael and Miss S had shared a bottle of wine with dinner, and if you were a patron looking over at our table, you probably would have thought the empty bottle of wine had been consumed entirely by me. Once my laughter and slurred speech came to an end, I told the birthday girl we had to press on and order dessert. Three desserts were ordered. Three desserts were eaten. I sampled all three. They were delicious.

Later that night Miss S emailed my sister about the dinner and told her “It was like feeding a Gremlin after midnight”, in reference to my enthusiasm about dessert. A short time after midnight is when I started hallucinating. 

The Aftermath 

In 1998 Oprah was sued by the Texas cattle feeders for comments regarding beef that she made on her show that they claimed defamed the consumption of beef. I am not trying to bad mouth the meat industry here, nor do I have the following or influence on a large international scale that Oprah has, so I feel like I can state the following without repercussion: The steak f*cked me up! 

Is steak the only thing you consumed from your “Do Not Eat” list during dinner? 

No, steak is not the only thing I ate that night. French fries, asparagus (grilled in butter), and sugary desserts were all a part of my dinner. I went all out. Did I mention it was all delicious? 

Why are you singling out the red meat? 

Much like my experience with Chipotle, which was highlighted in the post “Life is Burrito-ful”, after Rachael's birthday dinner I experienced a spike in symptoms, and ended up dehydrated and feeling bloated. Also like my experience with Chipotle I was totally backed up for four days, and swore that I was five pounds lighter once I was fully operational again. Up until the steak dinner I had experimented here and there with eating dairy, gluten, processed sugar and fried food. These experiments all ended like the Chipotle adventure. Not once did my food experiments cause a drop in body temperature, slurred speech, uncontrollable laughter, vivid dreams and hallucinations. 

When I recounted my experience to my doctor at my next appointment, I began by acknowledging that I did not follow his guidance regarding red meat. He nodded and smiled before he said “Makes you wonder what kind of hormones or chemicals ended up in that cow before it was slaughtered and served to you for dinner. Your body is in a very reactionary state right now and something in that meat caused you to have quite a chemical reaction. I would recommend you stay away from red meat moving forward”. 

Duly Noted!