research

Lyme Research Progresses

As a scientist with Lyme disease, the early years of my illness were distinguished by a frustrating lack of information in the published literature. I had to really dig to find relevant literature, and what literature there was seemed minimalistic, narrow, and or contradictory with either my own experience or other articles. The doctors most skilled at treating Lyme disease were (for the most part) not researchers, and the researchers were (for the most part) not listening to the patients or those doctors.

Skip forward a decade, and boy have things changed. While many of the researchers I mention were doing their research even in 2006, the body of work has grown in a satisfying and very extensive fashion. In addition, several Lyme specific funding agencies exist including the Bay Area Lyme Disease Foundation, the Lyme Disease Association, Lymedisease.org, and the Lyme Research Alliance, and the Dr. Paul Duray Research Fellowship Endowment, Inc. Not only are these agencies helping to fund critical research, but they are beginning to find ways to encourage new people to study Lyme disease. For example, Stanford Medical School has formed theLyme disease working group to study Lyme disease thanks to the work of the Stand4Lyme foundation

I want to highlight some of the people whose work is worth watching:

Dr. Eva Sapi, associate professor at the University of New Haven, was a biologist and cancer researcher who contracted Lyme disease in 2002. She eventually abandoned her cancer research to study Lyme disease. She has published about different strains of Borrelia’s in-vitro response to antibiotics (basic research that will eventually help to guide treatment); studied the role of Borrelia in Morgellon’s disease, studied the formation of biofilms by Borrelia, and most recently developed improved methods for cultivating Borrelia (again, critical basic research that will help with testing and proof that Borrelia was not just present in the past, which antibodies show, but is currently living in the body). She has also helped with first steps toward exploring whether or not Borrelia can be transmitted sexually (a question this blog also considers) by showing that Borrelia can be present in vaginal fluids and semen along with Ralph Stricker.

Dr. Raphael Stricker is an Internal Medicine specialist in private practice. His research experience originated in the 1980s, when he was an HIV researcher associated with the University of California School of Medicine. After a lengthy break, he started doing Lyme research in 2002, and has over 60 published articles on Lyme disease, co-infections, and Morgellons. Some of his articles are highly specific, dealing with topics such as musical hallucinations and optic neuritis. Others tackle critical issues such as the use of long-term antibiotics. Still others help to address the lyme wars head on, including his work on guidelines, the patient-reported impacts of Lyme disease on quality of life, gender bias in lyme disease, and sexual transmission.

Lorraine Johnson, J.D., M.B.A. is the executive director of the Lyme Disease Association (LDA), a lawyer, a blogger on Lyme policy, and an advocate for all of us. She regularly conducts surveys through LDA’s network of patients, along with the broader network of people on the state-by-state Lyme mailing lists. This group of patients represents primarily those with chronic Lyme disease. She often collaborates with Dr. Stricker and I have been lucky enough to co-author with her as well. Some of her works includes a review article on Chronic Lyme and an article on the severity of symptoms compared to other chronic diseases and a meta-analysis of cases demonstrating persistent infection post treatment.

Dr. Brian Fallon is a professor of Psychiatry in the Columbia University College of Physicians & Surgeons, where he directs the Lyme and Tick-Borne Diseases Research Center, which I believe is one of the the first if not the first center associated with a major medical research university to explore issues relating to persistent symptoms and longer-term treatments (including a meta-analysis of 4 published studies which became famous during the recent case between the connecticut attorney general and the IDSA about their guidelines), including psychiatric manifestations of lyme, changes in the brain associated with persistent lyme symptoms. He is on the advisory board of the Lyme Disease Association, and his bio there nicely sums up more recent work of the center, not all of which I could find publications for, on topics such as identifying a more sensitive Lyme Western blot, identifying unique proteins associated with  Lyme encephalopathy (but not chronic fatigue syndrome or healthy controls), post-mortem studies of patients with chronic Lyme symptoms and identifying of biomarkers to help guide treatment recommendations.

 

Dr. Monica Embers (faculty at the Tulane National Primate Research Center, and one of several researchers funded by the Bay Area Lyme Disease Foundation), along with Dr. Barthold and others studied persistent infection using monkeys. This allowed them to study persistence in ways that are not possible in human patients. Lorraine Johnston summarizes the implications for treatment and explores why this study was published 12 years after a parallel study by Wormser (of humans) in her policy blog. Dr. Embers also studies a variety of other topics including how Borrelia evades the immune system, the impact of slow growth rates of Borrelia on its persistence in the presence of antibiotics and the history, pros and cons of vaccination strategies.

Dr. Alan MacDonald runs the Dr. Paul Durray Research Fellowship Endowment. He has worked on issues such as long term persistence, but some of his most unique and impactful work focuses on the impact of Borrelia on the brain, including work on Alzheimer’s disease and the possibility that associated plaques are actually caused by Borrelia; Dementia and the presence of spirochetesMS and its relationship to Lyme disease; and Borrelia biofilms.

I am certain that this is an incomplete list, and for example it does not touch on the set of people who have been instrumental in writing treatment guidelines, nor does it highlight most of the research on Lyme in animals who can get it (e.g., dogs), studies of how Lyme spreads in the ecosystem, and so on. That said, I encourage you to keep an eye on the work of these outstanding researchers. We are lucky to have them, and their work spans the gamut from test-tube studies to surveys of patients to field studies of treatments.

 

symptoms, thoughts

Relapse #n

Or maybe I should call this YAR (yet another relapse). Who’s counting, anyway? This one (maybe) was triggered by international travel and possibly stress. I’m about a week in, and as usual it’s both new and the same. Started with night sweats (while still on the trip), transitioned to nausea (new) and dizziness and now some pain as well (headaches, back and shoulders, etc). Not to mention the fatigue, sometimes just putting my own boots on gets me out of breath (those zippers!).

As usual, I find myself trying to make something new of this, because I have to do something. In the past I’ve developed new treatment plans, explored disability accomodations, and explored new doctors. This time around … I went shopping for canes (I had tossed my old one in a fit of hope and because it was falling apart). I’m heading to a conference at the end of April, and I’ve always found “seat canes” to be particularly helpful in that sort of setting, so I invested in a much nicer one than last time around. It arrives Monday, and I hope it will be as nice as it looks online! I’m using a hacked together cane at work right now (an old broomstick with rubber bands so it doesn’t slip!) so I also invested in a very simple wooden cane to replace the broomstick.

Really though, I want something more satisfying to do than shop for canes or try to sleep through it. Lying here in my office (in my lovely zero-gravity reclining chair; another investment in comfort when ill) a few minutes ago I tossed around feeling sorry for myself and even tried to work up to some tears or a good primal scream, but really it just didn’t feel right. It wasn’t going to change anything, after all.  Then I thought about working, but I guess I need a better project in my line up because none of my current ones were appealing enough to pull me out of the haze of pain I was in. So here I am writing a blog post instead (and it is helping :).  Continue reading “Relapse #n”

research, thoughts

Disability Accommodations?

I have spent the past two weeks exploring what it means to work with Lyme disease from a new perspective. I’ve blogged before about why I think it’s valuable to view Lyme disease through the lense of disability. I’ve also blogged extensively about work and Lyme disease. However, I’ve never really put the two together. An important question, for those of us who work with Lyme disease is what accommodations, if any, are appropriate to ask for, and how one might go about doing that.

First, it is important to know about the Americans with Disabilities Act (ADA), which protects people with disabilities from discrimination. The ADA specifically prohibits discrimination by employers with 15 or more employees, public entities, public accommodations, telecommunications, and so on. It was passed in 1990 and progressively narrowed by the courts in terms of the situations to which it applied. Thanks to an amendment in 2008 it was broadened again to ensure that it focused on discrimination across a wide range of disabilities. Because of that change, Lyme disease is now covered by the ADA.  Continue reading “Disability Accommodations?”

activism

Repost: Thanksgiving in the Lyme World

For those of you not on the CALDA (California Lyme Disease Association) mailing list, I wanted to share the message they just sent me. I joined their list because they are extremely well organized and I often keep an eye on their site because it’s full of great information. It’s inspiring to me to see how many things folks in the Lyme world are accomplishing. Here’s their message:

Scientists sequence Lyme disease genomes

Researchers have determined the complete genetic blueprints for 13 different strains of Borrelia burgdorferi, the bacteria that cause Lyme disease. The wealth of new genetic data should help scientists develop improved ways to diagnose, treat and prevent Lyme disease. Click here to read more about it.

2010 CALDA Lymewalks raise research funds, awareness

San Francisco, Sacramento, Los Angeles, San Diego, Ukiah and Humboldt County were the sites of six CALDA Lymewalks held in September and October. In addition to increasing public visibility of Lyme disease and collecting funds for research, the events became Lyme community-building events as well.

Lyme-TAP program offers financial help to patients in need

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program offered by Rotary Club of Ferndale Foundation in coordination with Humboldt Lyme Awareness Group. It can provide reimbursement for up to 75% of the cost of diagnostic testing for tick-borne diseases. Click here for more information.

Massachusetts passes Lyme doctor protections

Governor Duval Patrick posed for this photo with Lyme activists after signing the 2011 Massachusetts state budget, which included an amendment to protect physicians who give long-term treatment for Lyme disease.

Increased media coverage of Lyme disease

Maine television station WSCH6 ran a 4-part series on chronic Lyme last summer. New Hampshire public TV station WMUR devoted a one-hour special to the subject. Almost every day, articles about Lyme disease appear on TV, radio, newspapers, magazines and on the internet. Many of these articles come about because Lyme patients contact media outlets suggesting coverage. Keep up the good work!

More in-roads into medical journals

CALDA board members Raphael Stricker, MD, and attorney Lorraine Johnson have co-authored some 30 Lyme-related articles which have been accepted for publication in professional medical journals. Their most recent one, published in Philosophy, Ethics, and Humanities in Medicine is the third most accessed article for all time in that journal, with over 10,000 hits.

Restructure of IOM hearing and the Congressional Record

After CALDA and other patient groups pulled out of an Institute of Medicine Lyme disease workshop to highlight a highly biased process, the IOM restructured the session to be less biased. With the help of Congressman Chris Smith (NJ), we entered our “state of the science” report into the Congressional Record.  Click here to read it.

Increased Lyme activism

Becoming informed and staying connected are critically important for members of the Lyme community. More patients than ever are helping themselves and each other by joining CALDA’s network of on-line state Lyme support groups. And they are keeping abreast of Lyme-related news via the Lyme Times, as well as CALDA’s blogs, Facebook page and Twitter.

thoughts

Assistive Technology — don’t forget to use it!

It seems silly in retrospect, but one of the things that took me longest to integrate into my daily experience with Lyme disease was simple devices that would increase my mobility, strength, memory, and so on. Many of these things are inexpensive or even free, and all of them helped to reduce the impact of the symptoms I was suffering from.

Here are some top things that I made use of. Please comment on this post with your own ideas and maybe we can build up a nice list of things that anyone who is suffering from Lyme disease can draw from.

Continue reading “Assistive Technology — don’t forget to use it!”

research, thoughts

New hope for Chronic Fatigue patients

When you live in the nether world of questioned diagnosis, you spend a lot of time wondering if perhaps those doctors who say the problem is in your head, your lifestyle, and your diet are right. In my case, I was lucky to have a variable enough illness that I was constantly reminded that I was not the cause — as soon as I felt better I did more, no matter how short a time it lasted. I never had to think about it, plan it, or convince myself to do so, I just DID.

Lyme disease patients at least have the existence of a known pathogen to hold onto when they fight the external discrimination, and associated internal questioning, that characterizes their disease. For those with Myalgic Encephalomyelitis (known popularly as Chronic Fatigue Syndrome), until this week, that did not exist. On October 8th, the journal Science published an article by Lombardi et al. titled “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.” (also see this discussion by the author of Osler’s Web). Pamela Weintraub, in her blog Emerging Diseases reflects on the continued efforts of physicians and researchers to label diseases like Lyme disease and Myalgic Encephalomyelitis (ME) as pyschiatric illnesses. This is a form of discrimination and institutionalized myopia that has systemic negative affects on patients. It stifles research, reduces access to treatment, and forces patients who are already fighting a difficult disease to also fight for respect. Perhaps worst of all, they must devote mental and physical energy to all of this, while simultaneously fighting the internal battles necessary to keep believing in themselves despite a lack of definitive anything and constant encounters with naysayers. Continue reading “New hope for Chronic Fatigue patients”