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”.

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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.