How do I think (and act) rationally and prudently regarding potential lyme disease?
June 1, 2012 12:41 AM   Subscribe

I'm a bit panicked about lyme disease and having trouble thinking things through rationally--I've heard nightmare stories about late-stage untreated lyme and that's outweighing whatever I read. Hope me?

I've been hiking a lot (6-10+ mile hikes every weekend) for the past several months. I try to check myself for ticks afterward but sometimes I've forgotten, plus I've read that some ticks are tiny enough that you'd never know they're there (even once they're engorged.) The only ticks I've knowingly seen myself were giant dog ticks on my childhood dog years ago, but people I hike with have said they've found ticks on themselves after getting home. I've never seen the bullseye rash that indicates lyme disease but I've read that not everyone gets that (possibly only 50% do.)

Several weeks ago I had several days of achiness and chills, along with a sore throat. It didn't register as "sick" or "a cold" to me because my body usually does colds in one specific way, not like this (and that includes a runny nose. This didn't.) The achiness and chills have gone away. The sore throat mostly gone, though it morphed into laryngitis which has morphed into a dry cough. I don't think I have lingering fatigue (I hiked 9 miles on Sunday and have been doing couch to 5k with no trouble.) I've had some slightly unusual-for-me digestive stuff too. I'm not clear on whether/how much some of this matches with lyme disease--both the symptoms going away on their own after a while, and some of the things like sore throat. There are lots of not-quite mainstream/not .gov or .edu sites that list a broader range of potential symptoms. Generally I believe in mainstream science-based stuff, but it sounds like lyme might be a bit of a medical mystery, so I'm having a hard time limiting myself to things like just the Mayo clinic or NIH sites.

ANYWAY--I started thinking about this and worried, especially because my illness was both flulike (the ache and chills) and so atypical for my body, that this could have been the early stage of lyme disease. I've heard a LOT about people who somehow had untreated lyme disease which has progressed, and in the later stages it becomes pretty profoundly disabling and hard to treat. So now I'm really worried--I don't want to be one of those people!

I have an appointment with a random doctor from my (large) practice on Saturday--I figured I'd snag a weekend appointment while I could. Basically, though, I'm worried that the doctor won't think this could be lyme, and what if it is and goes untreated and I end up like all those people I've heard about? I've also read about how some of the tests are not that sensitive/don't always correctly show a positive for lyme disease when it's present. Should I try to be pushy about wanting antibiotics they'd use to treat early stage lyme's (not something I generally do or believe in) just in case it is lyme? How can I be super cautious but also rational? Am I being crazy?
posted by needs more cowbell to Health & Fitness (22 answers total) 4 users marked this as a favorite
I had Lyme in September of last year. I worked in the woods all summer, never getting a bullseye rash and only ever getting a few ticks that I can remember. I only found out that I had Lyme after developing Bell's Palsy in the right side of my face (while in Central America, which caused it's own set of problems). Even then, I was only diagnosed after specifically asking for the bloodwork to be done once I was back in the states. According to my doctor, I could have had it for up to three months before I was diagnosed; and Bell's Palsy is usually considered a "Stage Two" symptom.

Even after all that, I was sent home with a four week course of Doxycycline and was given a clean bill of heath after that. I'm going to get tested again in a couple months, just to be sure (it's a pretty basic and quick blood test), but that's just me being cautious.

What I'm trying to say is that when people talk about undiagnosed Lyme really messing people up, those people have usually had the disease for years before getting a diagnosis. Take the blood test, take the antibiotics. You should be just fine. If you want to get pushy about it, a month of Doxycycline isn't going to be terribly harmful even if you're negative. My brother did exactly that; got a negative result and asked for the drugs anyway. I think most doctors would humor you; you're asking for a relatively weak antibiotic, not opiates or anything.
posted by daniel striped tiger at 1:27 AM on June 1, 2012 [3 favorites]

As someone with a family member battling serious chronic lyme right now (and constantly battling it for the past 2 years) I'd absolutely push for antibiotics if you've been hiking somewhere high risk and then had flulike symptoms.

The horror stories you're reading are can be pretty accurate. And I mean, you may not even have it, but the small risk of side effects from the antibiotics would be better any day than dealing with the fallout of contracting a major, life altering illness. Especially one with so much controversy in how to treat it right now, which might prevent you from getting proper care if the disease did develop later.
posted by Sweetchrysanthemum at 1:34 AM on June 1, 2012

Firstly, try not to panic. Vague symptoms like that can be an early warning sign of a million different things (like not getting enough sleep) in addition to Lyme, and you are (understandably) focussing on that possibility because you've been hiking.

Secondly, your GP will be in a much better position to assess your risk based on one bit of information you seem to not have (or not mentinoed)--the prevalence of Lyme disease in your area. If it's going around, they may antibiotics may be a good idea. If it's not present in your area at all, it's could be highly unlikely that you would be the first/only case and also have only the vaguest of symptoms.

Also, what DST and SC said. If you are worried with good reason, taking the antibiotics in this case is not the same as demanding antibiotics from a GP for what is obviously a viral cold.

IANAD, this ain't medical advice.
posted by K.P. at 1:37 AM on June 1, 2012

Stop reading about health on random internet websites. If you do, check out the skeptics too, for a more balanced view. Science Based Medicine is a good start. Their linked article links to another article about how chronic lyme doesn't exist (which of course doesn't mean that people aren't suffering, just that the diagnosis is not correct) which links to an article in a scientific journal saying the same thing.
posted by davar at 2:25 AM on June 1, 2012 [9 favorites]

I had something similar after a backpacking trip--sore throat, fever, chills, no rash, about a day after the trip. I went to the doctor and explained that I had been in the woods and got sick afterwards and wanted to check about Lyme's. He gave me a white blood count test, and it did not show that I was fighting anything serious like Lyme's. I have been fine since! But I felt really good about my decision to get checked.
posted by shortyJBot at 3:32 AM on June 1, 2012 [1 favorite]

I had Lyme disease! We have no idea when I got it and do not remember any tick or flu-like symptoms. I had a bunch of neurological stuff (sudden onset!) which put me in the hospital for a couple of weeks and had me using a cane for a few more. I have some leftover problems years later - a little clumsy with my feet and some funny sensations in my legs sometimes - but nothing grave.

I know two other people who had Lyme disease who had long bouts of fatigue - a year or so of being really out of it and needing a lot of work/social support. They too were not diagnosed or treated right away, which substantially prolonged the fatigue thing. Both are absolutely fine now.

The take-away is twofold: tell your doctor that you were hiking in an area where Lyme was present, had a bout of flu-like symptoms and would like to be tested/treated for Lyme; and remember that while there are some really bad chronic cases of Lyme, many people have problem symptoms that respond to treatment quite well and make a full recovery. Oh, er, two point five fold: Many, many people do not see a tick or notice a bullseye bite. If for some reason your doctor dismisses your concerns on these grounds, get a second opinion. Most doctors are aware that folks don't always see the tick, etc.
posted by Frowner at 4:30 AM on June 1, 2012

1) Deer ticks are invisible to the naked eye.
2) I'll come back on my laptop to find the map, but your profile says you're in California. Deer ticks are, to the best of my memory, pretty rare there.
3) I live in the area of the highest concentration of deer ticks in the world. I got Lymes and it was diagnosed after a month. One month course of antibiotics and I was fine. And that was only after I felt like I was dying, because I was one of those people who just tries to suffer through. I had soooo many symptoms: fatigue, joint pain, achiness, mental confusion/memory problems, skin rashes all over my body (like the bullseye, but 36 of them indicating the infection had reached my blood) that were spreading a lot each day, swelling under the rashes, and probably a couple others. My symptoms mostly disappeared after 24/48 hours on antibiotics. It took a while to recover from the deeper stuff (exhaustion and swelling in my joints in places skin rashes were over them) but it wasn't a horror story in the sense of untreated Lymes.
My mom has had Lymes twice, once developing Bells Palsy from it. Same thing, a month on antibiotics each time and she was fine.
4) I was brought up on alternative medicine, but I am actually pretty sure Lymes (even chronic) is treatable with mainstream medicine. Most cases are cured with antibiotics - it is a resistant bugger, which is why it's a heavy antibiotic and for a long time, but if taken correctly it handles it. I know someone who claims she has chronic Lymes, but it's never been diagnosed as such. And she's been trying to get it diagnosed as Lymes for years, so she's had several doctors deny it. Another person I know did have chronic Lymes in the 80s - almost dies from it, in fact. His wife found him wandering the streets at night, drooling from dual Bells palsy, having no idea where he was. This was in the 80s before Lymes was well known about, so it was a long time before they got a correct diagnosis. They did a spinal tap or something rather drastic and actually cleared the neurological infection. It was a long recovery (one to two years) but he was cured.
posted by DoubleLune at 5:15 AM on June 1, 2012

Even if the OP has a slim chance of having Lyme disease due to his geographical location, general comment for anyone in this situation: Don't hesitate to be a pest at your doctor and insist that you get the tests you need. IIRC, I had to go to my doctor's office three times before he agreed to do the bloodwork to check for Lyme disease. He had himself convinced that the bullseye rash I was exhibiting was from a spider bite. Idiot.
posted by missmobtown at 5:42 AM on June 1, 2012 [1 favorite]

Hi there -- do go and get yourself checked out, BUT if it's any consolation, my entire family spent the month of May dealing with a virus with EXACTLY the symptoms you describe. It was like a weird, slow-moving flu that morphed into a cold/laryngitis/cough thing with digestive stuff (and even vertigo), and it took forever to go away (like, a 15-day course). The strange thing is, even though I'm on the east coast, I heard from friends in CA that they were also sick what sounded like the same thing. It went through the whole family, as I said, and was unlike any flu or cold I've ever experienced. Anyway, it's worth getting checked out for Lyme. just to allay your fears, especially with you hiking/time spent in nature history—but it also sounds like you might just have this odd, slow-moving flu thing.
posted by mothershock at 5:52 AM on June 1, 2012

Here are the maps. One shows where the deer ticks are, the other shows the reported cases.

The other thing I forgot to say earlier is that your doctor probably won't be as skilled at diagnosing Lymes in an area where it isn't super prevalent. My doctor literally took one look at me and said it was Lymes (didn't bother with a blood test because it doesn't always show up right away). So if you aren't convinced that the diagnosis is correct, feel free to insist on more testing. FWIW, the symptoms you have are only mild Lymes / not official symptoms, and it sounds nothing like I felt at any point I had it, but at the same time, everyone is unique and doesn't get all the symptoms.
posted by DoubleLune at 6:10 AM on June 1, 2012

Also, I can't urge you enough: WEAR BUGSPRAY. This is the only preventative measure against ticks, but is incredibly effective and well worth it.
posted by DoubleLune at 6:17 AM on June 1, 2012

Doctors can be really... problematic with Lyme. I had to go to three doctors to get diagnosed. (And this was in a super-heavy Lyme area! And I'd been covered with ticks repeatedly!) I had basically paralysis on one side of my body, an incredibly high fever, twitches and tics, and splotchy rashes. And two doctors were like "Hmm, NO CLUE WHAT THIS COULD BE." It was amazingly idiotic. And they weren't even willing to provide antibiotics. (Still kinda mad!)

Go see this doctor. If you don't like the answers, go see another doctor. This very well may not by Lyme, and it doesn't sound much like it to me, without any neurological symptoms or joint pain, but that's why there are blood tests. Which you should have. Also, the doctor culture of fear of antibiotics is totally nuts (in my non-medical opinion!), and there's no reason likely that you shouldn't do a course.

And finally: don't panic. Martha Stewart has had Lyme disease like five times. It is treatable.

(Also, since you're out west, well, not to give you something new to freak out about, but: Rocky Mountain Spotted Fever is very dangerous. But that's not something I think you have. At all.)
posted by RJ Reynolds at 6:23 AM on June 1, 2012

IANYD. I have to say as a physician, thank god everyone out there who has symptoms of a viral upper respiratory infection doesn't come to the doctor's office and demand Lyme testing and a course of antibiotics. It would overwhelm our healthcare system and be a huge waste of money.

Also, contrary to what was said above, doxycycline is not "a weak antibiotic". It's a great antibiotic that works well for a variety of common infections such as skin infections and pneumonia. If everyone is taking it when they don't have to, that greatly increases the risk of resistant bacteria out there. One of the reasons why doxycycline is great is that it still works for the resistant superbug MRSA. I'd like that to remain the case.

Doxycycline also has fairly common side effects including sun sensitivity, nausea/vomiting/diarrhea, and yeast infections.

Lyme disease is treatable even at a later stage. I am highly suspicious of the accounts you will read, both here and elsewhere on the inter webs, of people saying "I know I have chronic Lyme, but they have done all the tests and they were negative, and I've had the treatment and it didn't work." One reason everyone thinks they have Lyme is that the symptoms are pretty vague. You can certainly ask your doctor about it, but if you feel fine and he doesn't think further testing and treatment are needed, please consider the likely possibility that your symptoms were not caused by Lyme disease.
posted by treehorn+bunny at 7:16 AM on June 1, 2012 [8 favorites]

RJ Reynolds, have you ever seen a 12 year old girl die of MRSA pneumonia? I have. It only takes about 48 hours for her to go from feeling like she has the flu to death. Have you ever seen someone die of C. difficile colitis? It can be fast and brutal as well. Maybe if you saw some of these things, you'd understand the "doctor culture of fear of antibiotics".
posted by treehorn+bunny at 7:20 AM on June 1, 2012

It's not the upper respiratory symptoms that's making me think lyme, AT ALL. I'm not worried about those things and wouldn't be seeing a doctor (much less asking for antibiotics) for those. I just mentioned them because they also happened (almost 3 weeks after the flulike stuff.) It's the chills and achiness (and, I just went back and checked my notes), headache and skin being mysteriously tender to the touch, like a sunburn but I didn't have a sunburn), which are now over. Those seemed really strange (but tolerable) to me when I had them.

I've taken antibiotics once in the last 20 years--prescribed by the ER prophylactically when I got bitten by a dog. I'm aware of issues with antibiotic resistance, I believe in science, and generally dislike the idea of demanding antibiotics. I've also glanced at some things which suggest that the tests for lyme are flawed/not that sensitive for various reasons. In general, I believe in being anti-alarmist, but I'm having a hard time given the stories I've heard + this being about my own long-term health.
posted by needs more cowbell at 7:44 AM on June 1, 2012

Just for the sake of your own sanity, don't go looking at web sites for symptoms, ever. Especially for vague stuff like tiredness or aches. You'll think you have everything from Lyme disease to cancer.

Just go to the doctor, present your symptoms, present all the relevant information and let the go through their diagnoses. There's no need to start disease hunting unless that process seems to not be working.
posted by empath at 8:45 AM on June 1, 2012

nthing simply asking for a blood test. my mother had undiagnosed late stage lyme, and went through 11 doctors that told her she had everything from a brain tumor to god knows what, yet NONE of them suggested a blood was our veterinarian who finally did! interweb disease hunting will do you no good, and much more mental harm, and there's no reason not to question doctors, as for second opinions, or any kind of testing you want. it's YOUR HEALTH. asking for a few tests won't cause any harm, and at the very least will give you peace of mind. if your doctor refuses, for god's sake find a new doctor.
posted by assasinatdbeauty at 9:33 AM on June 1, 2012

There is no scientific evidence that chronic lyme disease exists. While it is possible to have lyme disease without the distinguishing 'bullseye' red splotchy thing, it is very, very rare, especially in adults. Look yourself over - if you do not have the rash, it is unlikely, though not entirely impossible, that you have lyme. Go to the doctor and ask him - but stop (and I say this as a medically anxious person prone to this habit) looking your symptoms up online and self-diagnosing.
posted by Lutoslawski at 11:44 AM on June 1, 2012

Where are you located? Certain parts of the country have very little to no Lyme disease, so if you live or were hiking there, you don't have to worry.
posted by Fister Roboto at 11:52 AM on June 1, 2012

Don't panic, but don't fool around with this either. The chronic forms are quite uncommon but in nearly every case it became chronic because the warning signs were dismissed. Lyme Disease is often mis diagnosed because the indicators (red bullseye) don't occur consistently and the symptoms are so varied. An added problem is that the blood test is unreliable during the early stages when you really want certainty.

I don't advocate taking antibiotics lightly, but you have enough symptoms going that it is a reasonable precaution. Doxycyline is the most common one prescribed for this.

My only qualification here is that I fought off this sickness two years ago and it involved about 2 months of frustration with about 2 weeks of grave concern about what was happening with my health.
posted by dgran at 12:15 PM on June 1, 2012

I also live in DoubleLune's area and am outdoors a lot. A large proportion of the people I know have had Lyme, often repeatedly. Few have had lasting effects.

I think you should demand a test but it could be any number of things or just a cold you had so I don't know that I'd go demanding antibiotics if the doctor doesn't recommend them. The early tests were pretty fuzzy but I've heard they have improved. Even being very familiar with it, the couple times I thought I might have it turned out to be something else (mono, lack of sleep, some flu thing).

I'm not sure if this is still the case but I know years ago when I was having a horse tested, the tests were unreliable simply because everything in this area had been exposed so the leftover antibodies would sometimes register and sometimes not.
posted by sepviva at 7:13 PM on June 1, 2012

I have an immediate family member who falls prey to the worst quacks imaginable. Sadly, her latest thing is "chronic lyme syndrome." She's found a physician calling himself a "lyme literate doctor" who charges her thousands for long-term IV antibiotics and supplements. Such LLDs, as they call themselves, have formed their own lobby/interest groups/professional associations to further their agenda.

Which means there's a contingent of people in healthcare--from nutritionists to chiropractors to physicians--who are making money off people by peddling the notion that chronic lyme syndrome (aka the persistent presence of the bacterial parasite in the body) is common and that mainstream docs are either too ignorant to diagnose it or are in some sort of conspiracy to deny it.

IANAD but from what I understand, lyme is not really a medical mystery. Blood tests can reveal it. Yes, some tests are more sensitive than others. And if you have it, up to 4 weeks of antibiotics are the recommended treatment.

HOWEVER, some labs are more given to providing positive results than other labs. And you'll find that "lyme literate doctors" use that/those lab(s) almost exclusively, because the LLDs are in the business of treating lyme (for cash mostly, mind you, since most insurance won't cover their unorthodox treatments), so they're very interested in saying you're positive for lyme disease. And of course, the longer they can charge you cash, the more revenue they bring in.

I tell you all this to caution you that internet research on this topic may lead you very, very astray as you try to figure out what's ailing you. There's a ton of absolute quackery about lyme on the internet; sadly, I've seen too much of it. There are "professional associations" comprising member doctors with this questionable agenda. They publish. And you may have already found some of their "research."

Sorry for all the scare quotes, btw. This is obviously a touchy subject for me personally, but it's also a controversial topic in medicine, since many physicians are upset that some of their own--scientists, by training--are engaging in unscientific and possibly unsafe practices.
posted by ImproviseOrDie at 5:45 AM on June 3, 2012

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