I have several unconventional beliefs.

For example, I think that chronic Lyme disease exists and is due to continued infection. This might sound like a mundane claim (that an infectious disease exists) until you realize the extent of the controversy over chronic Lyme disease/post-Lyme syndrome.

The “official” position, espoused by the IDSA, CDC and most doctors, is that chronic Lyme disease, a condition that thousands of people claim to suffer from, doesn’t exist and that patients’ symptoms can’t be due to continued infection.

My personal experience makes me believe otherwise. I got the bulls-eye rash and some hardcore Lyme symptoms in June and took six weeks of antibiotics. However, since ending the prescription last week, my original symptoms are returning full-force. My doctor says there’s no way I can still have Lyme and that it must be “post-Lyme syndrome,” but not an active infection. However, this sure feels like an active infection to me, given that I’m getting back serious, clear-cut symptoms I haven’t had ever since the antibiotics cleared them up a few weeks ago.

There are reasons to believe that Lyme bacteria can survive short-term antibiotic treatment, given that the bacteria may hide out in cystic form and in the nervous system (where standard antibiotics do not reach) to return when conditions are more favorable. It’s been shown that mice get chronic Lyme disease and sustain persistent infections from which other Lyme-free mice can become infected. The International Lyme and Associated Diseases Society reports that between 30 and 62 percent of Lyme patients show treatment failure (i.e. relapse) within three years of short-term antibiotic treatment thought to be effective for treating the disease, so there’s reason to think at least some bacteria can survive the initial course of antibiotics.

I can understand the arguments that something besides an active infection may be a factor in persistent Lyme symptoms. Anyone who’s had a die-off reaction when they started antibiotics knows that the bacterial lipoproteins from dead bacteria can cause serious symptoms. However, if chronic Lyme disease is only due to inactive leftover toxins, then why do symptoms alternately flare up and die down in the absence or presence of antibiotics?

I can also understand studies showing that continued antibiotic treatment for chronic Lyme may not always be effective, but to me, that’s because Lyme disease can be difficult to eradicate, not because it’s not due to an infection. Whatever the cause of chronic Lyme disease, we can’t just give up trying to treat it. It’s not something you can just live with. The symptoms I’m dealing with now are serious enough that it’s hard to write this column. Complications from disseminated Lyme disease include arthritis, bone pain, Bells palsy, memory problems, difficulty finding words, vision changes, hallucinations, paralysis, long-term fatigue and inability to work; it can severely affect people’s lives, as seen in the recent documentary “Under Our Skin.”

It’s hard when you have serious symptoms from a serious infectious disease and doctors say that you don’t have anything wrong with you. There’s shame from being told you’re making it up, frustration at your symptoms not being acknowledged and most of all, fear about how to treat a worsening condition — when the people who are usually best at that (doctors and Western medicine) are not helping you.

I have to wonder why Western medicine abandons chronic Lyme patients. Does it have something to do with insurance companies not wanting to cover long-term treatment for chronic Lyme disease? It’s ironic that you can be denied insurance coverage on the basis of having chronic Lyme disease, but then if you already have insurance, it often won’t cover treatment for that same condition (with reasons for this including that the doesn’t exist or that treatment is experimental).

Something’s going on with the politics of Lyme disease, to the detriment of thousands of patients. It may be a while before we understand the situation, much less sort it out, but we can take care of ourselves in the meantime.

Educate yourself about Lyme disease so as to catch it early in yourself or others, when it has a much better prognosis. Understand that you can have Lyme disease even if you never have the rash and if you test negative for it. Try to avoid getting Lyme disease in the first place by avoiding tick bites. For anyone who has or has had Lyme disease, read Brian Rosner’s book, “The Top 10 Lyme Disease Treatments,” and watch the recent documentary about Lyme disease controversy (most of which is on YouTube), “Under Our Skin.” And, write to me about what you think or what you’ve experienced.

Andrea Runyan can be reached at monandreamichelle "at" gmail.com or http://freeideasblog.blogspot.com/.