A lot of patients are feeling vindicated that longer term treatment with antibiotics is gaining more support when they see a doctor who used to hew tightly to the IDSA Lyme disease treatment guidelines has changed his mind.
What made the difference for the doctor in this article? To quote from the source:
"What changed my mind? Personal experience. A family member began to suffer a wide variety of strange symptoms 12 years ago, including facial numbness, slurred speech, problems with balance, abdominal pain, and headache. After a few baseline studies, her physician informed her that she was depressed and offered antidepressants. She told the physician she had read about Lyme disease and requested testing. He refused, stating (as I had to several of my patients) that her lack of history of tick bite and the classic rash disqualified her from any consideration of Lyme disease. But she worked and lived on a farm, had pets in the house, cut her own firewood, and spent much of her day outdoors. Deer (carriers of the primary Lyme disease vector, the blacklegged deer tick) were as plentiful as cows on the farm. The ingredients were all there...
She changed doctors and her new physician agreed to order an ELISA antibody screening study for Lyme disease. It was negative, she was reassured, and further workup was deferred. But the symptoms persisted, gradually worsening with time. She developed heart rhythm disturbances, migratory joint and muscle aches, and increasing weakness. The Lyme studies were repeated, this time including the Lyme Western Blot. Again, she failed to meet Centers for Disease Control criteria for Lyme disease. Multiple specialists, including neurologists, rheumatologists, and cardiologists, saw her; no one could figure out what was wrong. I kept thinking, “This seems to fit Lyme disease, but the tests are negative ... Hey, what do I know, these guys are specialists; I’d best keep my mouth shut.” Finally she was seen by a Lyme specialist. He initiated aggressive therapy for what he recognized clinically, and what was shown on repeat testing, to be a raging untreated case of Lyme disease. After years of misery and tens of thousands of dollars in medical costs, she is gradually getting better."
This is one doctor's story about one patient, but there are many similar stories that have been told online by other patients.
Based on this, one doctor changed his position on what Lyme disease was about, and now sounds supportive of longer term treatment - at least for someone with this specific background and case.
This is only one short article. I wonder how many other patients this doctor has seen and has wondered if they, too, have been struggling with Lyme disease.
I can't say that long-term antibiotic treatment is the right treatment for all patients in every situation; clearly some people can't tolerate them and their long-term effect on people is not entirely known. They are not risk-free, and they do not work equally well for everyone. At the same time, for patients in which they do work and it helps them get their life back, I have to wonder why there isn't more research being conducted on those who have already improved and reclaimed their former lives - and to compare them in some objectively measurable way against those patients who are acutely infected or have been suffering with long-term symptoms.
I keep thinking back on my own doctors who treated me for multiple ear and sinus infections with multiple courses of antibiotics, and how there was no external scrutiny from their peers or the insurance companies over whether or not my doctors could switch my antibiotics or give me more antibiotics in order to rid myself of such infections... There was no required blood test that I had to take in order to receive more and/or different antibiotic treatment. Objective evidence of infection wasn't necessary; I returned to the doctor and told them I still felt lousy, described my symptoms, and he or she gave me a new prescription.
Lyme disease is treated differently from a sinus infection. Differently from an ear infection. Differently from a urinary tract infection. Different from skin wound infections. All because for some reason, the idea is that Lyme disease has been properly treated after 2-3 weeks of the same antibiotic. In every case. For every person.
But is that correct? The word "guidelines" is supposed to mean precisely that. If an individual doctor determines a patient needs more treatment, then to provide more is at the doctor's discretion, based on an examination and the patient's response to treatment.
How does one support more treatment in one instance without providing any objective evidence, and deny it in another instance, while requiring objective evidence?
Is the goal for a physician to improve the quality of life for a patient, maintain their quality of life to prevent it from getting worse, or to cure a patient?
Is the goal of a physician - and the role of a physician - at odds with the goal of a clinical researcher and their own role?
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CO Quote:
ReplyDeleteThis is one doctor's story about one patient, but there are many similar stories that have been told online by other patients.
(end quote)
Although it is encouraging to read that a doctor has figured out that some people with Lyme disease are falling through the cracks, the medical community is still largely uneducated and frankly clueless when it comes to tick-borne illnesses. Although there may be no simple answer(s), the present state of affairs continues to defy any type of reasonable explanation(s).
It is disheartening to think how long it might take for every single doctor to learn about Lyme disease through personal or family experience as opposed to being educated in medical school or through various means of continuing education.
While this article is getting exposure throughout the Lyme disease community, I can only hope that it gets the recognition it needs and deserves through mainstream media outlets. It will no doubt be chalked up to "anecdotal" evidence by most doctors and therefore ignored. It remains easier for them to do so when certain authors are busy writing articles and letters that highlight the frustration expressed by some Lyme disease patients and their advocates as opposed to writing about the illness itself and what can be done to alleviate suffering.
I still don't fully understand how things got to the point where the controversy over Lyme disease has stood in the way of patients getting basic medical care. I'd prefer not to point a finger at individuals or a group, but it certainly is tempting.
I can't help but wonder how many more times similar stories need to be told before the medical community at large starts to take notice. It would be very helpful if Dr. Sayer and others like him would submit this to respected medical journals in the form of an article or even a letter.
Rita,
ReplyDeleteWelcome back. How are you doing after all the flooding? I recall you were helping family out, just wanted to know if everything went okay. I am out of the flood zone now, but I have relatives who have seen more than their fair share and don't want to see another raindrop.
Regarding your comment...
I think the current state of affairs regarding Lyme disease has gotten out of hand, and I want to know why middle ground is so hard to find. Why has this issue been so polarized? I would think that a certain amount of research would unravel some of the mysteries of this disease and resolve the issues. Instead, it looks like a cat fight between two entirely different parties is what rules the day.
It's problematic from both sides of the fence. From the patients' point of view, the IDSA can't do much right and some patients begin going down the conspiracy path, losing credibility in doing so. From the IDSA panel's point of view, they seem to think they are in the right, and that LLMDs are squarely in the wrong and taking advantage of people. From the LLMDs' point of view, they are trying to treat patients that were either clearly missed cases or patients who had already been thoroughly examined before and no conclusive evidence found at the time as to what was wrong with them.
All around, there are issues. Blumenthal's investigation stated that the IDSA panel had conflicts of interest in the dealing of Lyme, and now, in that recent Lancet letter, the IDSA panel is stating ILADS and LLMDs have conflicts of interest. Tit for tat, there. And it really doesn't solve anything to drag out these conflicts even as they need to be addressed in order to see if people can be impartial and unbiased. This is why I often say we need an independent research group for Lyme disease which is neither affiliated with the IDSA or ILADS.
This aside, when you say that cases such as these will likely be chalked up to "anecdotal" evidence, this is something I was trying to touch upon:
How much of what a doctor does in his clinic actually is about anecdote, when you really look at a number of everyday clinical situations? And how much of being a researcher or research physician is less about clinical situation and more about codifying and trying to standardize procedures based on research and data?
Doctors are not typically acting as scientists even if they use deductive reasoning to determine how to treat a patient. They're looking to treat the patient and see how the patient responds to treatment on an individual and not an aggregate group basis - unless they are doctors who are running case studies and clinical trials.
If I get a sinus infection, and I'm really miserable, the doctor will give me more than one course of antibiotics until I'm better. When this happens, I haven't received a blood test in the meantime to see if I still have a sinus infection or not - unlike Lyme disease.
The doctor sees how I respond and makes decisions based on me because he knows, perhaps, I've been under stress and my immune system is weakened, I have an underlying condition that leads to longer sinus infections (allergies, perhaps), and other factors. The codified nature of guidelines means they are not written for me, per se, but written for the average case.
This is how I think guidelines should be used - as guidelines for the average case. The question remains as to how many people really fall outside what has been viewed as average, and if the statement "My Lyme disease is not the IDSA's version of Lyme disease" does in fact apply in reality because of either individual factors in a given group of patients and/or differences in Borrelia strains which infect people (and for how long they've been infected).
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(Rita - more)
ReplyDeleteWhat can be done to turn around the anecdotal part? I think keeping scrupulous records of every patient, to start, case studies, and clinical trials for the specific subset of Lyme disease patients which Alison Delong said are most responsive to longer antibiotic treatment. Perhaps if that subset could be more clearly identified and set apart, then treated and followed up for improvement - then that could be a start on this path.
But one has to argue in a scientific manner versus a clinical approach-based way in order to address this issue or it won't get taken seriously by the scientific community. That's scientific community at large, as a whole, with a few exceptions. The practice of medicine is not exactly the same as the practice of clinical research. They are related, but they don't completely overlap, and their goals are different.
CO,
ReplyDeleteI've sent you an e-mail because some of the content isn't appropriate to post here. My focus has certainly been on Vermont for much of the past two weeks although I never left Toronto. Despite some of the logistical challenges, as well as a few of my own medical appointments, it was nice for a change to be thinking about something other than Lyme disease. My contribution has been as coordinator of information and moral supporter rather than physical labour. Walking and even standing are challenging for me, and a problem with one hip that I reported 4 years ago is just now being acknowledged, so I'm not all that mobile these days.
As you pointed out, it would require scrupulous record keeping to translate clinical experience into data that could then be analyzed as far as patient outcome is concerned. Part of the challenge is that people may be dealing with more than one infection and the longer a person is unwell, the harder it is to distinguish between Lyme disease and other possible reasons for health challenges. Unless testing is able to identify the strain of Lyme disease and genetics are accounted for, it will make it more difficult (if not impossible) to determine treatment outcomes. Long-term follow-up would also be an important component to evaluating how successful treatment has been.
The day-to-day practice of medicine relies in part on recommendations that may come out of clinical trials. Some recommendations may be more helpful than others, and I know my doctors have experimented a bit from time to time when I don't respond to typical treatments. I think that type of knowledge is something that comes with experience and maybe even a bit of intuition. I know some people are probably shocked that the practice of medicine is still a blend of science and art -- but I firmly believe it is.
I'll be sure to check back next week -- and take a look at Round 2 of the Scavenger Hunt. Even if I don't make the deadline, I still want to go through the research exercise because I always learn something unexpected along the way.
I'm glad you're not in a flood zone. It's been very stressful for my very elderly parents and other members of my family.
Rita,
ReplyDeleteJust letting you know I received your emails. Thank you. I may respond to them later. For now, I think it's great that you are offering support in whatever way you can, even from a distance.
I am trying to offer moral support to others as well, since I can't go over to their homes and help them clean up after flood damage. Some of them have lost a lot - their entire first floor of their house pretty much had to get tossed. They know others who have lost their homes.
Yes, one of the more difficult aspects of tracking persisting symptoms is ensuring the cause. If there is a coinfection, that could be producing more symptoms. If there is more than one strain of Borrelia, it may be harder to beat - but I don't know if that's a given or how well understood co-Borrelial infection is. There is also the issue of the wild card - the disease that has yet to be identified.
And then as you put it, the longer someone is ill, the harder it is to distinguish between Lyme disease and other problems or conditions. Some conditions would have arisen independently of the Lyme disease in a certain percentage of the population. And some conditions could arise because the Lyme disease was a triggering event. It's sometimes an independent issue; sometimes a chicken-and egg problem.
I think clinical trials are necessary, but I also think well-designed clinical trials have to be developed in two directions at this point if the Lyme controversy is to be put to rest. On one side, more research on how Lyme disease affects the immune system, and on the other, some method of determining what sets apart those patients who have been successfully treated with long-term antibiotics from those who have not been successful.
I'm glad I'm not in a flood zone either, but I will say I am dealing with something else that has been absorbing more of my time and attention - thus why I have been a little less prolific here lately.