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Today, Joe and I drove to New York state to see my infectious disease specialist, Dr L,, who is treating me for something that many such physicians believe does not exist: chronic Lyme disease. No matter that he keeps finding the Lyme bacterium -- or its DNA -- in my blood or urine, proof that I am still infected; no matter that I become symptomatic in a month or two when taken off the antibiotics, or that the symptoms disappear within 48 hours of being put back on them. No, according to the Establishment, which is commanded by Yale University so you know it must be Right, right? (HAH!) according to the Establishment the disease is always curable by 3 weeks of antibiotics and there is no such thing as a recurrent or chronic Lyme disease. You have continuing symptoms? Well, they are simply "residual symptoms" (ie symptoms without a cause, because there is no infection anymore!)
Anyhow, my Lyme disease has taken many forms, from causing hip disintegration that looked for all the world like avascular necrosis, but which healed by itself instead of getting worse and necessitating a hip replacement and immense weakness and fatigue due to nerve damage in my muscles, to central nervous system symptoms ranging from memory deficits to increased psychosis.
Lyme, though known at first as Lyme arthritis, is a neurotropic disease, meaning that it is directed first and foremost at neural tissue, at least according to what I have read. This means not only the CNS but also peripheral nerves, and neurons of all sorts. Because of this, manifestations of the disease are legion; in fact it has been called the Great Imitator, because it can mimic so many different diseases while being none of them. (It has even been known to masquerade as ALS, at least before the differential diagnosis.) For me, the first symptoms seem to have been gastrointestinal but soon multiplied, after the initial tick bite and rash (which I ignored, not knowing a thing about Lyme ticks or rashes); I wound up in the ER at least twice for dehydration, having spent the day vomiting for no known reason; I was found to have a chronic B-12 deficiency and resultant neuropathy; there were clear changes on my brain MRIs nine months apart, one with scar tissue, one without. I also startled way too easily. I startled when someone knocked on my door or called my name, I startled when someone jostled me or touched me, I startled even at thoughts that "surprised" me. I couldn't anticipate everything, so almost everything startled me, most especially lightning, which made me scream involuntarily each time it flashed, though I wasn't the least bit afraid of it, only embarrassed by my screams.
Eventually, a Lyme-knowledgeable psychiatrist heard about this from Lynnie, who was doing her best to find out what was wrong with me, and said she had never seen this sort of reaction, a kind of startle reflex you mostly see in infants, except in CNS Lyme disease. We made an appointment for me to see her ASAP and she confirmed her suspicions, telling us that I should make an appointment with a "Lyme literate physician" at once, so that antibiotic treatment could be initiated. That's how I cam to see Dr L.
I have seen him now for about 3-4 years and have been on and off antibiotics, the last time off from April 2006 to August 2006, which is when I was in the hospital. The reason this is so significant is that I believe that the only reason I had my relapse, the only reason that the voices overwhelmed me, that my father's illness overwhelmed me, was because the Lyme disease had started creeping back by then (July) and had lowered my resistance to stress. I think this because I also experienced rage reactions in the hospital, which characterized the first episode of Lyme disease as well, and has done so since, and because as soon as I was put on antibiotics both the rage and the startling ceased within 24 hours, about the time it takes for antibiotics to start working. The brief but extraordinarily vivid and detailed paranoid plots that sprang up and then popped almost daily were also reminiscent of those that characterized my initial bout with the disease, quite separate from the underlying unchanging theme of paranoia that runs my life.
Since then, I have not had a problem with startling once, nor any episodes of rage or the brief outlandish plots whatsoever. Sure, I've gotten pissed off, but I haven't screamed and thrown things and gotten out of control the way I did in my Lyme-induced rages. I honestly believe that if I was paranoid and psychotic anyway, the Lyme disease made it ten times worse, and probably made the hospital necessary rather than avoidable. It surely extended my stay and exaggerated my native paranoia.
Lyme disease is in fact epidemic in this country, despite what the Establishment says. Lynnie has seen a great deal of it in her practice, with patients who do not get better and do not get better until she has them tested for Lyme, and they come back floridly positive, start on ABs and finally respond to treatment, both psychiatric and medical. Now, the tests are not very good, in that a negative test means NOTHING. The negative test does not mean you do not have Lyme, it merely means that the test did not detect it this time for some reason or another. Some people with Lyme never test positive. But a positive test is gold, because it is the proof the Establishment needs in order to justify treatment. It's a lousy situation, but the fact is, there is no way to directly test a person for Lyme disease, so the diagnosis is often iffy and often derived more from clinical observations than from test results.
Nevertheless, I am convinced that Dr L knows something the establishment is in denial about, because whatever they choose to believe, longterm ABs have worked for me and every time they have been interrupted, I've had a relapse of one sort or another.Posted by pamwagg at October 11, 2006 07:30 PM