I consider an article such as this one to be a far better one than "Chronic Lyme: a dubious diagnosis" which was published in 2010 in the Chicago Tribune, because this one focuses on patients, their symptoms, and outcomes of their treatment in the face of information which contradicts their reality.
These two paragraphs tidily sum up the sort of information chronic Lyme disease patients are faced with when they first receive their diagnosis and begin treatment:
"I began my research on the Web site of the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health. “Lyme disease can usually be successfully treated with 3 to 4 weeks of antibiotic therapy,” it stated. “After being treated for Lyme disease, some patients still report non-specific symptoms, including persistent pain, fatigue, impaired cognitive function . . . . These patients . . . may be diagnosed with post-Lyme disease syndrome. Studies have shown that more antibiotic therapy is not beneficial and the risks outweigh the benefits.”
I was puzzled. Why did the NIH say long-term antibiotic therapy was not effective? Although it was only one case, my friend’s daughter had apparently been cured by it. And at this point, Pat had been taking a single antibiotic for about six weeks and was clearly getting better. After a week on the drug, the numbness in his hands started to recede. After a month, he stopped gagging while he drank. But he was still extremely sick, and it seemed clear that stopping the treatment would be a disaster."This is, as they say, where the rubber meets the road.
Once you begin antibiotic treatment and your symptoms begin to improve, the decision to stop them earlier doesn't make sense. When your symptoms are so severe that you cannot function and other alternatives you have tried have not worked, what else are you doing to do?
I have stopped treatment during the course of my disease - only to find my symptoms returning within a few days after antibiotics were stopped. Even after the worst of my symptoms began to fade, I have also gone without treatment for months, where I hovered back and forth between a state of flu and arthritis to fibromyalgia and functional fatigue - never living, just vaguely existing - only to improve when I began antibiotics again.
Inbetween the antibiotics, I tried painkillers and sleeping pills. I tried trigger point release therapy, gentle massage, and acupuncture. Of these, acupuncture worked the best. But beginning antibiotics again often not only brought the pain down - it gave me some energy and focus back.
As one person without a control version of myself, I can't really tell you how my control version would have fared without antibiotic treatment. But it's not a thought I want to contemplate, because I do remember just how much more worse off I was when I first found myself ill with Lyme disease and how I declined without treatment:
I could not understand what I read even if I read it multiple times and could not follow conversations around me. I remember crawling on my hands and knees to the bathroom, and not being able to wash my own back. Raising my arms became impossible. They were too heavy to lift. And at one point, I would fall asleep sitting up against many pillows and try hard not to move even the slightest amount because even that would send severe pain jolting through my entire body. From my head down to my fingertips; from my neck down to my toes. Every.single.joint. Every.single.muscle.
With antibiotics, I went from nearly bedridden to being able to walk. At first to the front door. Then to the mailbox. It was slow going. Agonizing.
But eventually, I did manage to get out more and walk further, and have life become at least a little closer to something resembling normal. Not in every respect - but not the hell it was when I first contracted Lyme disease, either. And I still have some distance to travel before I am more or less back to my old self.
This is just one report from one person. It's anecdotal. It's not the result of a clinical trial or published in a peer-reviewed well-established journal - unless we consider Rita, TicksSuck, Joanne, Heidi, Claudia, and others who comment here to be peers and this blog to be the journal.
I wish I had evidence I could give everyone to tell people that they helped me. That I improved, and when I went off of them for extended periods of time, it was like turning the clock back. Progress could be undone.
But I don't have hard scientific evidence to hand you on this one. I can say, though, that I went from doing next to nothing and wanting to die from severe pain to beginning to think again, read and write again, and sleep through the night without stabbing pain waking me. That, for me, was evidence enough that more antibiotic treatment helped. That's why I continued when I did.
Anyway... quit hanging out around here and go check out the entire Washington Post article, "The doctor diagnosed chronic Lyme disease, but many experts say it doesn’t exist": http://www.washingtonpost.com/national/health-science/the-doctor-diagnosed-chronic-lyme-disease-but-many-experts-say-it-doesnt-exist/2012/02/06/gIQA4aMHtR_story.html
This work by Camp Other is licensed under a Creative Commons
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CO,
ReplyDeleteI think it's a great article -- one that describes the situation that Lyme disease patients and their families so often find themselves in.
Your blog could well be considered a journal of sorts, couldn't it? I know I come here for information, great analysis, support, encouragement and hope that needed changes can be realized in time.
Your scientific knowledge and obvious compassion for your fellow Lyme disease is such a welcome change from some of the rhetoric that is so easily found on the internet. The "middle ground" you have created in this blog is truly a refuge for me, and the safest place I've found so far to share some of my experiences -- some of them quite personal.
I've read the article a couple of times already, but I'm going to read it once more before leaving a comment for the author. She really has painted what I consider to be an accurate picture of what it's been like for some Lyme disease patients who weren't fortunate enough to be diagnosed and treat in a timely manner.
Many thanks to you too, CO, for your continued efforts to make things better for all of us.
Rita,
ReplyDeleteI think it's a very good article for capturing how Lyme disease if left untreated can progress - and it's also good at capturing the confusion over the difference between what official treatment is for persisting symptoms and the reality of the struggle and improvement people have achieved on long-term antibiotic use.
It is a dilemma for many people at first - when they find out that there is no officially sanctioned treatment for them from major medical organizations for a disease that isn't supposed to exist, how does one proceed? One notable thing about this article is that it was an internist and not an LLMD which made the diagnosis of chronic Lyme disease. So it isn't just LLMDs who are making this diagnosis - other doctors are, too.
It is a hard line for many doctors to swallow. The idea of taking longer term antibiotics for anything doesn't make someone comfortable - even if it is by their definition necessary. It's even harder for someone to decide to prescribe longer term antibiotics when there is so much controversy around this condition and existing clinical trials are not considered supportive of more treatment.
I know patients who have been helped by longer term antibiotics. I know patients who have not been helped as much as they thought they would be. I'm not sure where to go with that, other than it's clear we need to learn more about people with chronic Lyme disease and investigate different approaches to treatment.
Rita said,
ReplyDelete"Your blog could well be considered a journal of sorts, couldn't it? I know I come here for information, great analysis, support, encouragement and hope that needed changes can be realized in time."
I'm glad you get a lot out of it and you're learning something from it. I'm learning while I blog, too. Don't forget that you offer encouragement in return. I thank you and other readers for that.
"Your scientific knowledge and obvious compassion for your fellow Lyme disease is such a welcome change from some of the rhetoric that is so easily found on the internet. The "middle ground" you have created in this blog is truly a refuge for me, and the safest place I've found so far to share some of my experiences -- some of them quite personal."
Aw shucks. Thanks. I do my best. Frankly, this is not an easy job. There is so much to learn about Lyme disease, other tickborne infections, and fields of science which directly relate to it that anything I write can only be a mere scratching of the surface. To really understand the science around Lyme disease, it requires a multidisciplinary education and experience to match - after all of my digging, it's clear we really need a team of people who are well-versed in different fields but working on the chronic Lyme disease issue together to make headway on this condition.
I can't be a one person team. I can report. I can relate. I can share one aspect of Lyme disease or something related to it which is very specific - but to be able to comprehensively lay it all out there is impossible.
This is eating an elephant with a fork - you can only do it one small bite at a time. And even then, once in a while you come across a bad bite of elephant and have to get rid of it - and more thoroughly cook the next one (if that makes sense).
CO,
ReplyDelete(lol) Yes, I believe I've also had a bite or two of elephant that required a bit more cooking. Some of my posts on two forums are actually a bit embarrassing for me to read now, but that's just a reflection of how some of my thinking about tick-borne illnesses has evolved over time. I believe that's only natural, and I hope it's a sign that I'm open to new ideas, while having also developed a slightly more critical eye when it comes to information about tick-borne illnesses.
No one can be a one-person team, but you are amazing nevertheless. Tick-borne diseases are a lot more complex than I ever imagined -- so this is one VERY big elephant we are all sampling.
The Washington Post article has generated close to 500 comments the last time I checked. If nothing else, it has allowed people with various points of view to voice their opinions in a public forum that seems to be well-read.
Rita,
ReplyDeleteThe same is true of me, too. I look back on some of the earlier posts I made here, and I think my perception has changed over time as well as my knowledge of them.
I don't know if I'm embarrassed of the older posts, per se, but I do feel an urge to refine them. If I learn something new or see that I've made an omission or decide that something I wrote in the past could be updated and/or better expressed, I have gone back to a few of my earlier entries and edit them and include a note I've done so - or I add my own note in comments referring to new related research or my changed perspective.
The one thing which has changed the most for me is that after looking at a lot of research, I began to wonder if the chronic infection vs. immune system argument was too simplistic and that the issue of what causes chronic Lyme disease is more complex than a clear "either infection or immune system" problem.
The Washington Post article is very good. I wish more journalists would write about the situation using a similar style and approach. I haven't posted a comment there and I can barely keep up. Fatigue has been hitting me hard the second half of the day.
Take care, CO. Try to get some rest.
ReplyDelete