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
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