In writing this blog, I suppose a few statements are in order.
On chronic Lyme disease as a persistent infection
There is evidence in a few human case studies and animal studies that Borrelia burgdorferi spirochetes can survive antibiotic treatment. I look at this as pointing to the possibility that chronic infection can occur, though I do not know how often it occurs or in how many people.
The IDSA guidelines panel would say someone in my position has Post Lyme Disease Syndrome - that I am someone who has a history of a tick bite, EM rash, and positive serology, and was treated for Lyme disease with antibiotics but continued to have symptoms after initial treatment. They would say my condition is now not infection related and possibly an autoimmune condition. There is some evidence for this hypothesis regarding molecular mimicry and Lyme arthritis, but more evidence is required to move this hypothesis to theory.
The vast majority of patients in my situation would argue against this autoimmune model, and state that a chronic infection (or combination of tickborne infections) is the source of the problem, and call this problem chronic Lyme disease. They make this claim based on their experience of having improved after taking longer courses of antibiotics than the IDSA guidelines have stated - even though studies exist which state longer term antibiotic use is not that effective for patients with persisting symptoms which occur after initial (and often delayed) antibiotic treatment.
To add to the confusion, there could be people who genuinely have developed autoimmune conditions as of a result of infection with Lyme disease.
Who is correct in this matter? I don't know. Perhaps there isn't a uniform answer that fits every patient.
What has happened to all of us is not well understood. It requires more research - research which is not receiving adequate attention and funding through the usual channels.
I don't particularly care what the cause turns out to be as long as patients can get their lives back and the pain and suffering we experience is alleviated.
On long term antibiotic treatment
I have taken antibiotics longer than the standard IDSA panel guidelines state should be given for treating Lyme disease. I have also been treated for babesiosis. It is my experience that longer term treatment and treatment for babesiosis helped me get through the most debilitating symptoms and pain I have had in my life. Period.
I don't have a control version of myself to see how I would have fared without antibiotics during this time - but frankly, I wouldn't want to. I was begging to die because the pain was that bad.
This all said, I can't advise a particular treatment plan or advocate that everyone take antibiotics for a certain period of time. Patients must consult a qualified medical professional for proper diagnosis and treatment. Each individual has different issues after receiving an infected tick bite, and it would be presumptuous of me to diagnose and advise any specific treatment based on my own clinical history.
I made my own decision; I don't expect everyone else to do the same. Educate yourself and talk to a doctor who has experience in treating tickborne diseases.
I did take longer term antibiotics and they did help, but I want to say it wasn't easy... and to be frank: I hate taking antibiotics.
A number of the oral antibiotics taste vile, no matter what I drank to wash them down. Some left a metallic taste in my mouth for months to come. They've messed with my digestive system, no matter which ones I have taken and how many probiotics I consumed around them.
There is always the risk of allergic reaction (been there), the risk of side effects (too many to list here; I experienced some of them - some worse than others), and risk of secondary infections (C. difficile, staph, others).
So you get the idea that I think taking this stuff isn't so great? Yes, I know, these are drugs which must be respected for what they can do, both good and bad. At the same time, if you can barely walk and think, and taking them helps you walk and think, well... what are you going to do? Things can get really nasty for some people with this disease. They got really nasty for me.
If you don't support the use of long term antibiotics for persisting symptoms of Lyme disease, then be a positive force for change in this situation. Instead of riding me for the decision I made to try it, advocate for more research on my condition and for development of better tests and treatment for my condition. I really rather take a different drug that clears infection and balances my immune system than take more antibiotics. Give me a choice to try something different where there's evidence that it works and is safe, and I will.
On IDSA, ILADS, and Lyme disease politics in general
Really really tired of the Lyme disease controversy, the involvement of politics in medicine, the fact that there are sides over how to properly diagnose and treat Lyme disease, and how the media in general portrays the controversy over Lyme disease. Really sick of all of it.
Please stop all the nonsense. It's already two generations old. None of us are getting any younger.
Can we just look at the data, do research, and work on the damn problem, NOW?
And in the meantime, be both a) honest and b) compassionate towards patients - regardless of what you believe?
On this blog
This blog is exploratory in nature. And while it is exploratory and may give way to speculation and hypothesis at times, I do my best to write using documented sources and offer citations unless something is clearly a rant or commentary.
When it is an opinion piece, citations may not be included. But otherwise, when discussing topics of a scientific nature, I usually refer to abstracts, articles, and papers from major science media web sites and peer reviewed established journals that are accessible outside paywalls such as Elsevier.
If you are working in biology, microbiology, entomology, molecular biology, genetics, or immunology, and you read something on this blog which you think is an error, please feel free to email CampOther at gmail or leave a comment pointing out the error and offer citations along with your correction. I will not be offended - in fact, I will be relieved you have pointed it out. I also will be ecstatic if you offer a better source on the same topic that patients and the general public can read and follow (in other words, nothing on the order of a Krebs cycle chart, please).
Note that from time to time, I independently review former blog entries and revise them for content. If my understanding of a subject improves or I see there is new information that makes something in an existing entry outdated, I will edit old entries and make an edit note on them to inform readers the content has changed - or I will leave additional new notes in comments.
Unfortunately, because this is Blogger and not Wikipedia, there is no change control system where you can track which content has been removed or added. If the nature of such edits concerns you, please copy those pages on items in which you take most interest and save them to compare them against any new changes which are made.
In general, keep in mind that the entries in this blog and their content are time dependent, and over time how Lyme disease and chronic Lyme disease are discussed and understood by owner of this blog and other contributors will change. Older entries, therefore, may not as accurately reflect the state of the science on Lyme disease and other tickborne infections as much as newer entries do.
This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.