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Comment by vanderZwan | Hacker News Reader

My younger sister had lyme and was nearly paralyzed before it was discovered. Both of my parents are GPs.

My aunt caught Lyme when visiting us in Europe (note that the European and American versions are different), and had to visit 5 different doctors before she got her treatment. The first two thought she was just overworked. By the third time my uncle (neurosurgeon, living in Europe) suggested she had Lyme. The third and fourth (Canadian) doctors refused to check it. The last one finally was willing to send a blood sample to the lab.

Lyme is very easily missed. It can manifest itself in a way that has nearly no visible symptoms, with only the patient claiming to be in enormous pain.

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> Lyme is very easily missed. It can manifest itself in a way that has nearly no visible symptoms, with only the patient claiming to be in enormous pain.

This is absolutely true.

My wife contracted lyme disease just after our son was born. It was originally written off as postpartum symptoms or postpartum depression. By the time it was diagnosed, antibiotics were not effective. She felt so awful from the antibiotics that she quit that course of care and switched to homeopathy. Following the homeopathic care, she has gotten remarkably better--but still feels occasional ill effects, including a food allergy that surfaced after her contracting this disease.

Lyme disease is no joke.

> switched to homeopathy

Why did she prefer homoepathic water to regular water?

I know it's difficult to figure out an unusual illness of any kind, but there are far too many cases where physicians insist on one diagnosis even when it does not fit the symptoms. I've seen it first hand with family members, where a cancer diagnosis could've been made far quicker if they hadn't wasted time with useless bullshit that was just treating side effects, not the major symptoms.

This baffles me, and makes me very eager for computerized systems which hopefully won't just ignore important facts about the case.

My son was on an island at a retreat, and his neck and head started hurting like crazy. He was instantly diagnosed by his peers, the counselors and the resident nurse. He was ferried/driven 200 miles to a hospital the same day for antibiotics! So it varies to be sure.

It's probably also true that, in part because of sharply increased infection rates, there's a much greater awareness of Lyme disease in the states where it is prevalent than there would have been even just 10 years ago. When I came down with a high fever and various other symptoms, it was the first thing my doctor thought of. (Turned out to be something else I caught while traveling but Lyme and other tick-borne diseases were definitely on his radar.)

Your son, like most people who get Lyme, probably had a bulls-eye rash and/or recalled being bitten by a tick. A bulls-eye rash is enough to diagnose Lyme disease.

Not only that if you start coming down with symptoms of Lyme right after getting bitten by a tick then diagnosis is very trivial. Those who don't have a bulls-eye rash or recollection of tick bites and don't spend a lot of time in the woods have non-specific symptoms such as fatigue and joint pain. Those are the cases that the diagnosis can very easily be missed.

Nowadays Lyme is so common around here that anyone complaining of any non-specific symptoms gets a Lyme blood test. 10 years ago that was probably not the case. A friend of mine went to the doctor with non-specific symptoms and tested positive for Lyme. If her doctors didn't run the Lyme test they would have missed it. They ran the Lyme test even though she didn't spend any time in the woods or remembered any tick bites because they now know to.

If Lyme isn't on the radar of doctors that is a huge problem for diagnosis of some cases. It probably would especially suck for someone who lives in, say, Utah who went to vacation in Maine and didn't recall a tick bite. Your average Utah doctor has probably never even seen a patient with Lyme disease and probably won't think to check for it or ask if you've traveled somewhere where Lyme is common.

Source: http://www.cdc.gov/lyme/stats/chartstables/reportedcases_sta...

Unfortunately, that's not the case in all areas where Lyme is prevalent. On top of that, the standard Lyme test is not very reliable. Living in New Jersey (filled with deer, mice, and ticks) you would think that doctors would be more aware. But it took several different doctors, emergency visits, hospitalizations, and, yes, a negative Lyme test before my wife was finally diagnosed.

The standard reply in the hospital was that even though they had no clue what was wrong with my wife, they were certain that it wasn't Lyme. And since insurance doesn't cover the Igenix tests, we had to pay the $300+ out of pocket.

Like you said, the standard Lyme test is not very reliable. Even if laboratory tests are ordered, labs are still using immunoassays for confirmation of Lyme (ELISA, then a Western Blot), which have relatively poor sensitivity (~70% or lower[1]) due to low serum concentration of Borrelia or possible absence of antibodies—so they can miss one in four true-positive cases. The newer PCR-based assays have much better sensitivity (>70%, maybe closer to 90%[2]), but the assays are not yet in widespread use, are still being proven, and thus are seen only as adjuncts to immunoassays that can provide further evidence of Lyme. It can also take a couple weeks from when the bullseye rash appears (or when the tick bite occurs) for serology to test positive, again due to the Borrelia/antibody concentration being below the limit of detection. Samples tested are also usually blood, which may not be as good as CSF. It's a tricky bug to diagnose in the laboratory, which is why it comes down to the discretion of the clinician and the doctor's knowledge of the patient and his or her history.

1. http://www.igenex.com/files/should_know.pdf

2. Laboratory Diagnostic Testing for Borrelia burgdorferi Infection, Lyme Disease: An Evidence-based Approach: http://www.cdc.gov/lyme/resources/Halperin_2012_Chap4_Johnso...

The first time I got lyme in like 1995 or so, no one really knew what it was, and these were doctors close enough to Lyme to actually know it as a town. I remember I got passed around the pediatrics office I attended and finally had to go to a specialist in a major children's hospital before it was correctly diagnosed and treated. Its hard to be treated in areas outside normal lyme areas because its most common symptoms are pretty much generic lethargy and pain (the trademark bullseye rash doesn't always make an appearance).

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