Just a note to let anyone who comes here know: This blog is on hold for now (probably at least for a year, maybe longer). I am on sabbatical (read about that here) and taking a vacation from all things lyme :). Hopefully the bugs will give me the break I want! Best wishes to all.
Dog update
June 21, 2011 at 10:39 pm (dog)
Tags: antibiotics, diagnosis, dog, treatment
After a couple of months of doxycycline (no one balked or questioned it when I went past the initial prescription of one month, and the question about whether to increase the dose hung only on whether my dog could stomach it — how different from how humans are treated), my dog has stabilized. It is a relief to see her feeling and acting like herself again, and we were able to stop the antibiotics entirely a few weeks ago. When we did, her urine test (a measure of kidney disease) even improved slightly. She seems to be stable.
The really frustrating thing about this, though, is what the vet in New York said when I brought her out to visit (we moved her from Pittsburgh to New York because my family and I are going on sabbatical out of the country for the next year). His comment? “We see this all the time in this area.”
Support #2
June 15, 2011 at 2:43 pm (thoughts)
Tags: advice, support
I’ve posted before about the importance of finding support; attended support groups; recommended mailing lists. I’m one of those people who naturally seeks mentorship and support wherever I am as a way of coping with whatever I’m going through. But recently I’ve also realized just how lucky I am to find support in everyday places — the colleague/friend at work who listens and thinks through my illness with me, the husband who takes on extra duties, the parents who, though at a distance provide unending ideas, are willing to pitch in with labor and looking, believe in my experiences. Sure, I’ve had days where it seems that no one cares enough to call, friendships lost and regained only when I had the energy to pursue them again, days when I was on my own with too much expected of me and too little energy. But overall, even without support groups and other formal mechanisms, I am supported.
Unfortunately, not everyone is as lucky. Having recently had my name in the paper in an attempt to raise local awareness about Lyme disease, I have been contacted by a number of people who are also struggling with it. While these individuals are uniformly motivated and active in fighting for their health (they all made the effort to find me, after all), the varied experiences they have been through reminded me again of what has been shown for other illnesses: a complex ecology of support and connections exists among those who need support and those who give it [1], and dependence on individuals ranging from the helpful clerk who loads a car to a close friend can make independence possible. So if you find yourself refusing help (or needing it), please remember: asking and receiving are another way you can be strong, and a natural part of the human experience.
[1] Forlizzi, J., DiSalvo, C., and Gemperle, F. (2004). Assistive Robotics and an Ecology of Elders Living Independently in Their Homes. Journal of HCI Special Issue on Human-Robot Interaction, V19 N1/2, January, 2004.
Raising Awareness
April 22, 2011 at 4:28 pm (activism)
Tags: activism, bill, news, thoughts
I have to admit … there is a reason I don’t post as often: my motivation for posting on this blog for many years was the need to tell my story, reflect on my experiences, and (hopefully) help others in the process. As I’ve gotten better, the urge to post has gone down (aside from the obvious continual relapses, worries about my kids, my dog, and so on), and I think it’s likely to stay that way until I begin to find a new role, and a new reason to share. Right now, that reason is raising awareness in my local community and more broadly.
In recent weeks, I’ve had the unusual experience of working closely with a reporter to tell both my own story and that of my research. The results can be found in two articles ([about my research] and [about me]). The goal was to spread the word to folks in Pittsburgh that Lyme is here and spreading, and to watch out for ticks.
I’ve never done something like this before, told my story in such a public forum, and given someone else control over the words used, the supporting (or debunking materials), the photos, every aspect of how I was presented. Despite that, having written a blog gave me a feeling of familiarity. Little did I know how different it would be: The readers of this article, the folks who have contacted me, include almost everyone I know in my personal life, many of whom I have never spoken to about my Lyme disease. Read the rest of this entry »
Dog-gone Lyme
March 15, 2011 at 9:11 pm (dog)
Tags: antibiotics, dog, organs, relapse, vet
Lyme has been, for the most part, less of a factor in my life in recent months. Sure, it’s there, and sometimes worse than others (or is that just the bronchitis I spent a month fighting back from?). But it is something I can push to the side — it’s part of the routine, and it’s not my focus. It requires no meds, and the naps & other symptoms are not getting in the way. Perhaps I just need to push it aside — I hardly realized how many headache’s I’d had at one point, until the day I was pain free and even then the first reminder I had that something was different was all the comments I got from others on how perky I looked. Suddenly I realized that a weight really was off my shoulders for that day.
So I really thought of Lyme as something that I could put behind me, at least for now. In fact, my focus was on the sad signs of my beloved dog’s slow progression through old age towards the end of her life — kidney issues, less energy, and so on. A few weeks ago, this became more acute, with vomiting, diarrhea (even in the house), and a loss of bowel control. She became desperately ill, barely able to move, clearly in pain, and I took her to the vet. Her pancreas was inflamed, her kidneys necrotic, her abdomen seemed swollen, a mass inside, and the diagnosis was abdominal tumor, unlikely that she’d make it through the next month… They called an ultrasound to confirm, and found …
RePost: Open Letter to Lyme Youth
February 21, 2011 at 9:48 pm (activism, kids)
Tags: activism
Dear Lyme Youth,
Hello, I am glad to have a chance to have “met” you online, or at least received notice from Julia that you want to join us. Thank you for getting involved. As I’m sure you all know, our cause is a crucial one. Every step we make towards advocacy and awareness builds prevention. We don’t want anyone else to have to suffer from Chronic Lyme! I know we can all work together and support each other through this battle.
I guess a short introduction is in order. I’m Ariel, and I’m organizing LymeYOUTH for Lyme Action PA. I’m twenty-three, and I have Lyme and co-infections. I was studying community organizing at the University of Pittsburgh, but I am on medical leave due to my illness. So I have a double stake in this—I am dedicated to social justice and I want to spread awareness about this terrible disease. But I’ve never been a leader before, so please bear with me as I learn. My biggest hope for our movement is that future Lyme sufferers will get prompt, adequate and respectful treatment within the medical community.
We are organizing right now for a march on Harrisburg during Lyme Disease Awareness month. Hopefully, I’ll see you and other Lyme fighters there. Senator Greenleaf, who has been instrumental in trying to pass the Lyme bill for years, will definitely be there. We might even get Darryl Hall, who has Chronic Lyme disease, to play at the rally.
I am organizing the stories of youth with Lyme Disease and trying to create a database of your experiences. If anyone feels comfortable sharing their personal story with me, please let me know. I’d love to talk to you over the phone or through e-mail, whichever is best for you. If you aren’t comfortable, that’s alright, too. I have created an anonymous survey, which you can take right here.
How does all that misinformation online affect Lymies?
February 5, 2011 at 8:15 pm (activism, research)
Tags: activism, lyme-war, lyme-wars, thoughts, work
I have been working toward this for two years now, and I can finally talk about the work we’ve done with the help of many volunteers. My paper, “Competing Online Viewpoints and Models of Chronic Illness” will be published at the premier venue in my field, the 2011 conference on Computer Human Interaction. For those of you with a medical background, in my field, this is equivalent to a journal publication in impact. Needless to see, I’m very excited to have finally gotten the work to this point, and extremely grateful to all of my co-authors, who helped me with every aspect of the research and writing, and all of the lymies who helped us to collect the data on which the study is based. I could go on for a long time about the personal accomplishment this represents and what it means to me (and I may in another post), but what I want to do here is say a little about what we did.
I am not a doctor, and however much I would have liked to do so, I am not qualified to conduct research that can identify a cure or otherwise directly affect the medical experience of individuals with Lyme disease. Rather, my area of specialty is information technology, and how people interact with it. Because of this, my work focused on how people with Lyme disease use online information in the course of their illness. I specifically wanted to understand how people negotiate the competing viewpoints present online (consider the contrast between the IDSA/Mayo Clinic/CDC/Wikipedia style information and that found on websites such as CALDA and ILADS). I knew that I personally had encountered both sets of information when I was diagnosed, and as a result I ended up putting my trust in doctors who did not treat me correctly. In my study, I wanted to document what happened to others, and identify possible solutions to any problems we discovered. My next step will be to begin to implement these solutions.
So what did we find? We found many examples of people who grappled with the mix of information online. Surprisingly, the kind of information that people trusted seemed to be affected by their diagnosis experience/initial beliefs about Lyme disease: Read the rest of this entry »
CD 57
December 10, 2010 at 9:47 am (tests, thoughts)
Tags: advice
— update —
After posting the information below I discovered an additional article from 2000 by Stricker & Winger. They evaluated 73 patients with chronic lyme disease. Six of those patients were tested repeatedly over 4 months. They found significant differences between those with chronic lyme, and various comparison groups. This constitutes (I believe) better evidence than any of the other studies I cited. The findings contradict the conclusions below. I’m not sure what to think — it appears that knowledgeable Lyme literate medical experts have concluded that the CD57 is not trustworthy, yet this (early) study seems to indicate a big difference between groups. Here’s my understanding of what they did and found:
Sample:
- 10 acute Lyme disease patients (within 1 month of a tick bite)
- 22 patients with HIV and CD4 counts < 200 / microliter
- 73 patients with chronic lyme disease (huge variety in this sample: 3 months to 15 years sick; 31 hadn’t been treated and 42 were in or post treatment; 48 had primarily musculo-skeletal symptoms and 20 had primarily neurological symptoms). Of these, 6 were tested repeatedly over 4 months and 1 was followed for 9 years
Results
- pre treatment 100% had abnormal cd57 counts; during treatment 50% did; post treatment 0% did (difference from pre treatment significant: p < .001)
- acute LD 0% had abnormal cd57 counts; HIV 18% had abnormal cd57 counts. Both groups differ significantly from the pre treatment lyme group.
- those with musculo-skeletal symptoms had higher cd57 counts (average = 58) than those with primarily neurological symptoms (average = 30); this difference is significant (p = .002), both groups improved during treatment.
- in the 6 tested >2 times, 4 had clinical improvement (and all doubled their CD57 counts or more) and two did not (and their counts stayed low). The patient who was followed for 9 years had persistent symptoms and persistent low CD57 counts. This case was in submission and probably corresponds to reference [2] below.
Absent the testimonials below, this seems to be fairly convincing evidence that the CD57 count is meaningful. I’m very curious to hear any explanations for the differences in opinion here, and I don’t believe my medical knowledge is sufficient to judge them.
— end of update —
Some investigative blogism seems in order as I’ve just been given a new test (the CD57, also known as the Stricker NK panel) and need to understand how to interpret it. I’ll start by summarizing what I found: Although CD57 is biologically associated with Lyme disease CD57 cells are not a reliable clinical marker for the level of disease in chronic lyme patients, although C4a cells (according to Savely) and/or the vitamin D reversal pattern (according to LymeMD) may be (hopefully I will get a chance to investigate those in future posts). That’s not to say that CD57 has no meaning, only that it’s not as straightforward to interpret, on average, as we would like. Here is my summary of the literature on CD57 to back up the statements made in this paragraph. I’ll start by trying to explain what the CD57 measures, and then I’ll discuss the clinical and medical evidence that it is not a valid marker for Lyme.
There are two summaries available online that try to explain what the CD57 cells are (one by Ginger Savely, R.N. who says elsewhere that it is not a reliable clinical marker, and one by LymeMD who says that in his experience the CD57 count has not been a good indicator of the needs of his patients). Free Ideas’ summary of other’s opinions about the CD57 leads to the same conclusions: don’t trust the CD57. It also includes a great illustration of how T-cells work.
Despite the skepticism of the bloggers mentioned above, the summaries are pretty accessible. Basically, they say that CD57 cells are a type of white blood cell. White blood cells, and specifically lymphocytes, are one way the body fights off infection. CD57 cells are type of lymphocyte, natural killer T cells. When the body is fighting and infection (such as Lyme disease), the number of natural killer T cells increases. Most of these are CD 56 cells, but a smaller subset has the CD 57 marker. The presence of CD57 cells can be measured using flow cytometry.
But why should we care about CD57 cells? According to Focosi & Petrini (2007), CD57 cells increase naturally with age and with diseases “associated with immune dysfunction” including conditions like multiple myeloma and rheumatoid arthritis as well as infectious diseases such as HIV, CMV, TB & Lyme (but they cite the Stricker & Winger papers (2002 & 2003) which argue that the CD57 count decreases with Lyme, so their statement is a little hard to interpret).
So what, exactly, is the evidence that CD57 cells might be a good measure of how ill someone is with Lyme disease? There are three published works that deal explicitly with the prevalence of CD57 in Lyme disease ([1, 2, 3] below). Two are longitudinal but anecdotal at best in the quality of their evidence ([1 & 2]). Stricker & Winger, 2003 present a case study of two patients with neurological Lyme with the unusual symptom of musical hallucinations. Over the course of 8 months, both patients were treated with oral and then IV antibiotics. One patient showed increased CD57 counts (she had received significant prior antibiotic therapy and began with a normal CD57 count). The other patient did not, and also only received temporary relief from her symptoms. Stricker, Burrascano & Winger (2002) is a case study of one patient over a 10 year period, who experienced consistently depressed CD57 levels. Marques, Brown & Fleischer (2009) is a sample study, meaning they gathered information from a much larger number of people, allowing it to use statistical tests to compare them. It finds no significant difference between those with lyme disease (divided into “post lyme syndrome” and “recovered”) and healthy volunteers. All three groups have a large range, and the means and standard deviations overlap a lot. This last study is to be trusted more than the longitudinal case studies because it looks at more people, however it tells us nothing about how CD57 levels change over time.
So here’s my summary: While CD57 cells are part of the immune system, and therefore have some relationship to how it is functioning, there is no clear information about whether they are associated at all with level of illness in Lyme disease [1, 2, 3]. The available data tells even less about possible cause and effect. However, although it is mentioned in the Burrascano guidelines as a possible measure of infection, there are two respected lyme literate healers (a doctor and a nurse) who have blogged independently about its unreliability (mentioned above). In the end, all we know for sure is that CD57 counts may be affected by infection [4], as well as age [4]. How they are affected, or what we can learn from that, is hard to say. I plan on looking elsewhere for quantitative measures of how my disease is progressing.
[1] Stricker R. B. & Winger, E. E. (2003). Musical hallucinations in patients with lyme disease. Case report, Southern Medical Journal, 96(7):711-715. (html version)
[2] Stricker, R. B., Burrascano, J. J. & Winger, E. E. (2002). Longterm decrease in the CD57 lymphocyte subset in a patient with chronic lyme disease. Case report, Ann Agric Environ Med, 9:111-113. (pdf)
[3] Marques, A., Brown, M. R., Fleisher, T. A. (2009). Natural killer cell counts are not different between patients with post-Lyme disease syndrome and controls. Clinical Vaccine Immunology. 16(8):1249-1250. (doi:10.1128/CVI.00167-09)
[4] Focosi, D. & Petrini, M. (2007). CD57 expression on lymphoma microenvironment as a new prognostic marker related to immune dysfunction. Journal of Clinical Oncology. 25(10):1289-1291. (DOI: 10.1200/JCO.2006.10.2251)
Repost: Thanksgiving in the Lyme World
November 23, 2010 at 9:56 pm (activism)
Tags: activism, news, repost, resources, support
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.
The energizer bunny
November 18, 2010 at 10:26 pm (my story, my-daughter)
Tags: alternative, fatigue, flare-up, pain, thyroid, yeast
I’m starting to feel like chronic illness just keeps going and going and going …
I know that’s the definition of chronic, but I keep getting my hopes up. I suppose the right thing to focus on is that life goes on too. And for the most part, I do. But this is my space to talk about other things. Like my daughter, who is continuing to complain of daily belly pain even after the constipation treatment. We’re waiting on the results of an x-ray to see if constipation is still the cause, but she’s complaining of headaches now too and I am not hopeful.
While she is obviously a focus of my concern, my own situation is also not so great right now. I’ve experienced a lot of pain, fatigue and brain fog recently, some temperature regulation problems, ear ringing is back, and so is napping and a little dizziness. I am ramping up the yoga again and taking frequent salt baths. I am also trying to get my sleep patterns back under control. My homeopath/MD suspects yeast, and gave me a bunch of supplements and diet change (low carbs/sugar) to help with that, but I’m also going to see the endocrinologist because my appetite has been out of control, which happened the last time I was hyperthyroid. Tomorrow bloodwork, then we’ll see.
Anyway, I’m surprisingly cheerful despite all this, and I’m still hopeful it’s a temporary symptom uptick. As I said: my bigger concerns are with how to help my daughter. But I wanted to give an update nonetheless. No interesting stories or major insights today, just the realities of ongoing chronic illness.
