Naivete crashes against the rocks of reality

When I first was diagnosed with Lyme Disease, I optimistically, naively, assumed that having caught this thing early and gotten antibiotics, I'd finish taking my medicine and be done with it.

Not so fast.

What I have now learned is that Lyme is an incredibly frustrating and confusing disease to get. Not the least of which because there is so much disagreement about it and so much that is simply not known for sure.

Everyone agrees that ticks carry a variety of disease that can be transmitted to humans, of which Lyme is merely one (and the most well-known). Everyone agrees that an organism called a spirochete is responsible, and that a tick bite can transfer spirochetes to a human. The spirochetes multiply in the human body and cause various symptoms, including fatigue, aches, chills, joint pain and fever. Everyone agrees that certain antibiotics are generally effective in treating at least some cases of Lyme, and that if left untreated, the spirochete will infest the nervous system and may cause a parade of horribles including facial paralysis, arthritis, multiple sclerosis and more.

But here's where the body of conclusive knowledge ends and the frustration begins.

It is very difficult to diagnose Lyme. Lab tests are notoriously unreliable and frequently give false negatives. Why? Not sure. Could be some people are tested too early, before antibodies are made; people who take antibiotics like me may not make enough antibodies to show up; labs may not be sensitive or careful enough; or maybe we just don't know enough to know why there is such a high rate of false negatives. If you get the famous bull's-eye rash (think the Target logo), oval or circular, sometimes with a white center, that is considered a conclusive diagnosis of Lyme. But if you don't get the characteristic rash (and some people don't; estimates range from as high as 70% to as low as 20% of Lyme patients do NOT get the rash) or if you don't see it (if it's on a part of your body you can't see well, like your back, or that is covered with hair, like your back scalp, and the blood tests are negative, you may not get treated quickly enough or at all.

It is also difficult to treat Lyme. There is widespread debate about what it takes to knock out the spirochete. The most conservative say 7 to 10 days of antibiotics; others say 4 to 6 weeks; some say a minimum of 6 weeks of treatment is required because the life span of the spirochete extends for at least a month so you have to treat long enough to be sure you've killed all stages of it. Some say oral antibiotics are enough; others say intravenous are necessary, at least in some cases. Some say 100 mg of Doxycycline twice a day is enough; others say at least 300 to 600 mg per day is the minimum required; some say other drugs are better. Some doctors scoff at Lyme patients, saying it's all in their head and referring them to shrinks if their symptoms last longer than the doctor thinks is reasonable.

As a newly-diagnosed patient, I took my meds but now am seeing additional symptoms crop up. The most troubling of these is joint stiffness, swelling and pain. It may horrify you to know that IT'S AFFECTING MY KNITTING. (It horrifies me, too.) I've never had any of these symptoms before (e.g. a strange creepy-crawly sensation on my skin, like brushing against a spiderweb but there's nothing there; to the point where I've scratched the skin raw in places) and they are well-documented in the Lyme literature so I have to think there's a connection.

My regular internists pretty much have dropped the ball. When I phoned to report additional symptoms, their reaction was to ask for a blood test to make sure I really have Lyme's. Not helpful. (See, for example, the Center for Disease Control website: "Validated laboratory tests can be very helpful but are not generally recommended when a patient has [the classic bull's eye rash]." or WebMD: "If you have symptoms of Lyme disease but test results are negative, treatment should not be delayed. " and "Detecting antibodies to the bacteria that cause Lyme disease does not always mean that the infection is active.") If the test is accurate, it will certainly show antibodies since I had the disease (hence the rash), but it won't tell whether the infection is active and on-going or merely leftover antibodies. If it's not accurate, it'll suggest I don't have Lyme, which I suppose will mean it's all in my head.

So I decided to consult an expert, someone who really knows Lyme, who can tell me if I've been "cured" and these are just residual symptoms, or if I need more treatment. There aren't that many specialists in Lyme, and ones that are considered Lyme-friendly, meaning they won't send you to the men in the clean white coats if you complain of long-term symptoms, are highly sought-after. The first doc I called had a one-year waiting period for new appointments, took no insurance, and charges $750 for the first visit plus over $2000 in required lab tests (only 25% of which might be covered by your insurance, if you're lucky).

I ended up with an appointment with a doc in New Jersey. Here's hoping he understands why a disease that interferes with my knitting MUST BE ERADICATED.

And the sooner the better.