Over the weekend, I had the privilege of attending the LDA and ILADS sponsored conferences on Lyme Disease. I left Pittsburgh worried that I would find the three days of talks I planned to intend incomprehensible, boring, or simply overwhelming. I returned having soaked up hour after hour of information. The material engaged me in so many ways. As a person with Lyme Disease I found myself learning to understand my own condition, hearing about how doctors actually make treatment decisions, discovering with scientists new knowledge and promising possibilities for tackling the beast inside me. As a researcher studying Lyme disease I was delighted to discover other social scientists studying its effects in the schools and in the workplace, and to make contact with possible collaborators in the activist and scientific communities. Perhaps most surprising was the power I felt from being in a room full of other people who all understood, cared about, and had been forever changed by their encounters with Lyme Disease.
A room full of people who care about Lyme disease
October 28, 2009 at 9:09 pm (research)
Tags: activism, doctors, thoughts
Drawn in by false hope
June 24, 2009 at 9:59 am (my story, tests, treatment)
Tags: alternative, doctors
I was hesitant to even write about this experience, because who wants to admit it, but I wasted a lot of time and hope on something that I shouldn’t have. The reason I am telling you this is that if you are ill you have probably faced the same temptations I do, and maybe we can all learn something from my experience.
What exactly happened? I desparately want a cure, and I fell for the promise of one…
Ways of knowing
December 19, 2008 at 12:37 pm (thoughts)
Tags: doctors, knowledge, lyme-wars, thoughts
I just finished an interesting book, “Patient from Hell” (Schneider and Lane). The central thesis of the book has to do with the types of evidence that can lead to knowledge about how to treat something and how the medical profession fails to make use of some of those types of evidence. A second key point in the book is that certain types of decisions should be in the hands of patients, not just doctors. Let me try to clarify these points, since I think they are very relevant to the experience of Lyme disease. As a side note, the book itself is a little difficult to follow, this is not necessarily a recommendation of the book, just my attempt to restate their conclusions in terms that make sense to me and relate to Lyme disease.
The type of knowledge that is most commonly used in medicine is called “frequency knowledge” by Schneider and Lane. This is the knowledge that is created by trying something over and over again and seeing what happens. For example, flip a coin enough and you’ll know if it’s balanced or not. Give long term antibiotics to enough people with Lyme disease and maybe you’ll find out whether it can help them. This kind of knowledge is relatively easy to generate in an easily controlled, repeatable situation (like flipping a coin). However, it is much harder to get solid frequency knowledge in a more complex situation where every coin you are flipping is different (or every person with Lyme disease is different). Clinical trials generate frequency knowledge, and in the case of Lyme disease, they will probably be at least partly inconclusive until many more trials are run.
A different, equally valid type of knowledge that is sometimes ignored is “process knowledge.” This kind of knowledge complements frequency knowledge, but is sometimes not considered to be truth by doctors because it is “untested”. As an example, consider the image at top right. It’s made with wooden blocks that can be put together in any number of combinations. No “studies” have been done of this particular construction, yet you can look at it and with a fair amoutn of certainty, you can predict where the red marble will end up (even though you do not have complete informatino about the structure). Not only that, you can predict with complete certainty what will happen if I remove a critical block. You are using logic to draw valid conclusions about the world that are likely to be true even though they are untested. The wonderful work being done to understand Bb’s life cycle, the ways in which it may resist antibiotics, and so on, are all examples of process knowledge. This knowledge can be used by researchers to infer potential was of treating lyme disease. It can also be used by patients and doctors to decide, now, given a lack of frequency knowledge, what the best choices are. This is one part of the path taken by LLMDs.
Up and down, up and down
March 24, 2008 at 3:20 pm (symptoms, thoughts, treatment)
Tags: chronic, doctors, fatigue, memory, pain, work
It’s been a while since I made an entry in this blog, though I often think of things I’d like to write about. A big reason for this is that I’ve been trying very hard to return to my working life (somewhat unsuccessfully). As a result I cut out from my day everything that isn’t directly benefiting the kids (computers and the kids just don’t mix) or my job. You might note that no where in that sentence did I refer to the things that benefit me, and that’s probably part of why this attempt was unsuccessful, though my illness of course also contributed. But all of that is a topic for a separate post.
Today I’m here to talk about my symptoms, and my doctors, and the frustration of how badly the two are interacting. At the bottom of this post you’ll see a very nice little diagram showing my symptoms (yellow line) and the other factors that may interact with them. Anything below the 0 line is bad. For example, I started tracking my sleep around 3/11, and you can see that for the first two days, I got *less* sleep than I should have. In contrast, you can probably see that my symptoms were better than normal around 2/12 and 2/26 but worse than normal around 1/15, 2/19 and 3/11. Details on the scales and what I was tracking can be found in the caption below the image.
Now, I made this chart because I’m a scientist and I like data, but because I’m a scientist, I also know that this chart is almost meaningless. Less meaningless than my daily symptom logs (which I’ve almost stopped doing at this point, nothing new seems to come up) but still meaningless. First of all, I don’t have anyone else’s charts to compare with. Second, it’s a lot of data, but way too little to conclude anything. Maybe after a year or so I could reach conclusions, but right now it’s impossible to correlate behavior with results.
So why am I keeping a chart? A couple of reasons.
- First off, my memory is shot, so it’s hard to report clearly what’s happening without recording the data. At least that way I can be concrete with my doctors.
- Second, my memory is shot, so I need something like this to prove to myself and others I’m still sick — look, this, today, is not the normal me — remember, I once lived without pain. You might think that I don’t need to do this anymore, but at this point is exactly when it seems to be necessary once again. In the last week, I had two alternative docs tell me that they had nothing more to offer me, that I just had to stop worrying so much and I would start to improve. Not quite as bad as saying I’m just imagining being ill, but not exactly the help I was hoping to get. The only doctors who are still truly checked in and helping at this point are my MD/homeopath (who still seems unsure of how to help me) and my therapist (who is great, but can’t give me a cure).
- Third, science may not be able to draw conclusions, but sometimes you have to trust your gut. I hope that with the help of this data to supplement my memory, my gut may start to reach some conclusions about what is helpful and what is not. I have to decide whether to do yoga or not, how important sleep is, and so on. Science can’t help me, my doctors can’t help me, my intellect is running out of ideas, so maybe at least I can help my gut guide me.
So I’ll keep the chart, and I’ll keep adding to the chart, and I’ll keep waiting. The increasing numbers of days with energy give me hope. The increasing numbers of days with lots of sleep provide affirmation that I’m doing what I can to help myself. And maybe one day the whole picture will either tell me what I’m doing is working, or show me what to do.
Chart 1: a history of my symptoms. I track
- cold: whether my I had a cold or the flu (since my immune system functioned so badly when I became infected, the hope is that we will see an improvement now that I’ve been treated). Scale is -1 (sick) to 0 (not sick)
- symptoms: (scale is -2 (lots of symptoms like pain and fatigue) to 2 (lots of energy plus no symptoms)
- period: since it seemed to match up with downturns. Scale is 0 (no) or 1 (yes)
- hrs sleep (only tracked since around 3/11). If I get 7.5 hours of sleep (exactly enough when I’m energetic) that maps to 0 on the scale. If I get less than 7.5 hrs, I subtract 1 for each hour less. If I get more than 7.5 hours, I add 1 for each hour more.
- Whether I did yoga (only tracked since around 3/11). 0 means I did yoga morning and evening, -.5 means I only did it once, -1 means I didn’t do it at all.
Who coordinates the doctors?
January 2, 2008 at 11:37 pm (my story, treatment)
Tags: doctors, massage, yoga
Perhaps one of the reasons lyme is so hard to deal with is that it falls between specialties. Is it an infectious disease? An auto-immune problem? Are you simply sick in the head as many will claim? Lyme literate physicians come from many walks of life, and the treatment for lyme itself necessitates recovery — long term antibiotic therapy can lead to yeast overgrowth and other syndromes that may themselves cause fatigue and malaise.
So far (as of 1/1/08), I have discussed or received treatment for different aspects of my disease and its treatment from a: massage therapist, homeopath/naturopath/MD, cranio-sacral therapist, infectious disease specialist, kinesiologist and lyme literate physician (formerly family practice, now lyme specialist), neurologist, ear nose and throat doctor, and several pediatricians (to learn about whether my children could be infected and how it might have occurred). In the near future I plan to see a dentist (since my teeth have turned black, presumably from the antibiotics) and begin yoga for strengthening, stress relief and immune support.
At first, I found that I had to carry around a packet of my test results and prove to each doctor that I had lyme. I also found my spreadsheet invaluable and brought printouts of it to almost every appointment. Every one of them (excepting the lyme literate physician and massage therapist) approached me with an attitude that implied they thought that I could be one of those poor folks who thinks they have lyme when they don’t. While this skepticism is valuable in helping folks who are in that situation, it is intimidating to have to prove something rather than simply to be able to say “My doctor says I have lyme, can we now discuss what comes next?” I quickly learned which test results to emphasize when telling my history.
Which physicians and therapists/therapies should I spend money and time on? How in the world do I coordinate amongst them all so that they work in synergy instead of simply working in parallel (best case) or against each other (worst case)?
Finding a doctor…
November 1, 2007 at 1:51 am (my story)
Tags: doctors, thought
It is amazing how having a diagnosis lit a fire under me. I suddenly felt justified–this was not just in my head, it was real. Also, I suddenly knew what to do next, a novel feeling after a year of being lost in a catalogue of endless symptoms that I had the guilty feeling I probably should just grit my teeth and ignore. First, I did research online. I read about lyme and confirmed that it matched my symptoms. By Nov 2nd, I had begun a diary that included a history of everything I could remember to date and a daily cataloging of my symptoms (based on a list of possible symptoms I found online). I knew this would be invaluable when I faced the next skeptical doctor. Next I talked with a friend of the family who answered some of my questions. This, combined with my online research, was my first introduction to the lyme wars, as I like to call them — he was so strongly in one camp that I felt unable to even ask many of the questions bouncing around my head. Last, I began looking for the right doctor… not nearly as straightforward a process as finding a good Massage Therapist.
My MD/homeopath, who ordered the tests that led to the diagnosis was smart enough to know that she should not treat me without the consultation of an expert. For this I am very grateful, as it is very important that any expert know his or her limits. She also apologized for not catching this sooner for me. Although I dismissed the need for an apology at the time, I have since come to be very grateful that she could say that to me. In reality, I am very lucky, as many people with the sorts of symptoms I have are misdiagnosed for years before, if they are lucky, they find out what is wrong. Also, her approach to treatment of my symptoms up until that time ensured that I had not been treated with remedies such as steroids that might have harmed my chances of healing.
I made appointments with three doctors, after getting recommendations:
The first, who’s office was 1.5 hours outside of Pittsburgh, was recommended to me by a staff person in my MD/homeopath’s office. This doctor falls into the controversial side of the lyme wars, and my MD/homeopath was quite upset that I was considering seeing him when she heard his name had been given to me. His nurse spent 45 minutes on the phone answering my questions about lyme when I called her at home to ask about making an appointment. She was compassionate, willing to answer any question, and absolutely wonderful. At the appointment itself, we spent about 3 hours speaking either with the nurse or the doctor, and again they were extremely compassionate and full of information. Also, they were very experienced, since their office specialized in Lyme patients. Unfortunately, they were not covered by my insurance and far away. Worse yet, the doctor had been on antibiotics for 18 years and seemed upset when I did not wish to begin a course of antibiotics that would last 2-4 months or longer. He fell squarely into the controversial camp, and was almost as inflexible as the doctors I encountered in the other camp. Even so, my husband and I left this office believing that we had probably found the people who would help us navigate this illness.
I next called every infectious disease specialist who any one recommended to me as having experience with lyme in Pittsburgh to try to get an appointment. I felt experience was important for obvious reasons, but especially important since there was disagreement about how lyme should be handled, but no question that someone who had been ill as long as I was more likely to be a complex case. One measure of experience was whether their office would be willing to see me right away, and this eliminated all but one office. Even that office could not get me an appointment with the doctor I wanted to see, but at least let me see another who was also highly experienced. Unfortunately, this office was not covered by my insurance. This doctor was also compassionate and willing to answer questions, though the appointment was much more typical in length. He was definitely in the other camp, but willing to discuss my questions in a more balanced fashion than the other two doctors. Also, he took certain symptoms I experienced seriously enough to recommend a more aggressive treatment than the previous doctor, and we believed that this was warranted.
The third appointment was with a “standard” infectious disease office covered by my insurance. He knew the doctor from the second appointment, and agreed to prescribe what that doctor suggested (thus ensuring that it would be covered by my insurance). His attitude was a little condescending, and he did not seem to like my questions. We had no urge to continue seeing him aside from financial need.
The best doctor of all is one I encountered a month later in an attempt to find someone truly willing to answer questions. I have only met him by email and by phone, but his willingness to talk, to discuss both camps in a balanced fashion, and to even discuss specific research papers has been tremendously helpful. More on my conversations with him and with the microbiologist who introduced me to him in a different post. Suffice it to say that stepping out of the doctor patient relationship and approaching a lyme researcher as an informed citizen asking their help made a big difference for me.
