Lyme disease: just how screwed am I?

October 19, 2012 9:14 AM

LymeDiseaseFilter: Have you or someone you're close to had Lyme, had it treated, and more-or-less lived to tell the tale? I'm seeking anecdata to help me calibrate exactly how freaked out I should be about this diagnosis.

So I recently got a definitive diagnosis of Lyme borreliosis via an antibody test (Western blot) that's apparently fairly unlikely to produce false positives. I've spent days reading over all the recent literature, but it's unfortunately a super-politicized field, with a big angry split between researchers who think it's no big deal, just take some antibiotics and it'll go away, and researchers who claim it's a persistent infection that might just never fully clear with current treatments. Plus bonus accusations and counter-accusations of ethical violations and evidence suppression, fun!

I'm to the point where I'd really just love to hear some real people's experiences with the disease, to help me figure out some sort of realistic middle ground between Ehh, no biggie and Congratulations on your new future of inevitable agonizing pain and increasing cognitive dysfunction!

Bonus points if anyone can comment at all on:
-- Disease/treatment courses that depart from the "classic" mold. Part of what has me worried is that I'm fairly sure I got the Lyme erythema-migrans rash AFTER completing my first course of antibiotics: I'd gone to the doctor in early August with the post-tick-bite swollen-glands-and-fever part of the disease (no rash), and was prescribed 21 days of amoxicillin, but then ended up getting a fairly small (3cm) solid oval rash in early September, about two days after finishing the antibiotic. (Full disclosure: I missed about 5 pills of the 63-pill course due to flightiness, but surely that shouldn't completely inactivate the treatment, should it?)

I spent most of September hoping that perhaps the rash was something else and I'd never had Lyme at all, until the positive Western Blot, plus some very mild but definite knee pain, plus the mysterious disappearance of the mystery rash on exactly the expected timeline for EM, pretty much clinched the matter. I started 21 days of doxycycline about a week ago, and the knee pain is pretty much gone, but I'm concerned that if there IS a biofilm-forming, refractory, brain-eating strain of the disease out there, the failure of the first course of treatment might mean that that's the one I've got. (I know the antibody test should stay positive whether I've got working Borrelia or not, but the new symptoms seem suspicious for ongoing infection... right?) So any anecdotal reassurance (or confirmation :( ) on that front would be awesome, as well.

-- Tips for dealing with docs. I will of course be seeing a rheumatologist ASAP, but I'd like to figure out beforehand exactly how aggressive I need to be about seeking ongoing treatment or assessment.

-- And lastly, dynamics of the disease with pregnancy/childbirth (another disputed topic among the experts). This is particularly rotten timing because we were planning on trying for another kid in late November.

Basically, tl;dr-- please tell me about your experience with Lyme disease. Thanks so much!

posted by anonymous to health & fitness (28 answers total)

fwiw, people I know who've had their Lyme's disease diagnosed within a couple of months of getting it (which is rare and amazing) and go through the nauseating battery of antibiotics have gotten over it completely. (Apparently. Maybe it comes back when you're 70, like shingles. Who knows?)

The people in my life who are totally fucked are the ones who've had it for 20 years with various amorphous symptoms and finally get properly diagnosed (often after getting diagnosed with CFS, depression, etc etc). By then they've got nerve problems and are all sorts of a mess.

Speaking strictly anecdotally, the second scenario is more common, and it's compounded by the insurance companies prohibiting it as a diagnosis, or requiring extraordinary and expensive burdens of proof that they won't pay to get until the diagnosis is reached, sometimes years later, at which point they MAY reimburse you. There is even one insurance company that declares that Lyme's disease doesn't exist.
posted by small_ruminant at 9:26 AM on October 19, 2012 [1 favorite]

I had Lyme disease when I was 13 (and it was still new, exciting and there was much less fear-mongering on the internet). I had neurological symptoms and a course of IV treatment. I never found a rash and only discovered that something was wrong when the symptoms showed up. It took about four months for me to be back to my usual state and meaningful improvement took about a week after diagnosis. I still have a few very minor parasthesia-type things that I assume will never, ever go away, but it's been more than 20 years and I have not had other problems.

I have a friend who had Lyme disease the produced fatigue. It took her about a year to really recover and she still has some fatigue problems occasionally. However, she had an underlying health issue before the Lyme.

As with almost every other medical problem I or a family member has ever had, IMO the people who post on the internet are the small minority who either have unusual cases or have psychological concerns which make getting better harder for them. When my partner got gallbladder problems, I read a bunch of message boards and was convinced that most people got "post-gallbladder syndrome". Which certainly sounds horrible and I have no doubt is real and crippling...however, I have since talked to a number of people who have had their gallbladders removed with no ill effects even over years, so it seems likely that there is a sizeable population for whom gallbladder surgery really is pretty undramatic. Similarly, I absolutely believe that there are people who suffer gravely from Lyme for many years, but I don't think it's common.
posted by Frowner at 9:29 AM on October 19, 2012 [2 favorites]

I have known many people with Lyme. They were diagnosed fairly early, took the recommended course of antibiotics, and that was the end of it. They are all happy and healthy and do not complain about any lingering symptoms or discomfort. The worst case I personally know of is a friend who was diagnosed in 1989. She was on an antibiotic IV--it took care of the Lyme but apparently pretty much wiped out her natural biota and she suffered some severe intestinal issues--but once that was taken care she was fine.
posted by Seymour Zamboni at 9:30 AM on October 19, 2012 [2 favorites]

My ex's father had untreated Lyme disease for a long time before he was treated. I had suspected (but not confirmed) Lyme this summer.

My ex's father's experience, as I recall: Intermittent periods of feeling crappy, He let it go on long enough that he ended up with some kind of nerve damage. As I understand it, the nerve damage persists, but stopped progressing when he was treated. He doesn't have a "syndrome", but he does have lingering issues. You have to remember, though: He wasn't aware he had Lyme for quite some time. At least months, maybe a year or more.

My experience: I had a tick bite. I went to the doctor a few weeks later because I felt bad. He gave me antibiotics because he suspected Lyme or something like it. It cleared completely up, and there has been no fallout thus far.

Good luck.
posted by Coatlicue at 9:30 AM on October 19, 2012

I guess after reading these other comments I should add: I did have wacky intestinal symptoms for a couple of weeks. I did have scary and dramatic neurological problems at onset. I did and do have some lingering nerve stuff - some permanent numbness, some numbness that comes and goes and my feet seem to get cold easier. I also think I'm a bit clumsier on the feet than I might otherwise have been, but it hasn't kept me from dancing, biking, etc. So my point is that you can have "nerve damage" and so on and still have it not be that bad - nerve damage can vary a lot. Honestly, the worst long-term effect was that for years I was convinced that the tiniest, tiniest symptom of anything was Something Terrible, since the onset symptoms for Lyme were very small but escalated rapidly, with the whole process taking just long enough to go from "huh, my feet feel weird" to "OMG, I have to go to the ER now!!!!!" in a couple of hours.
posted by Frowner at 9:35 AM on October 19, 2012

And I add that we have no idea when I got Lyme - was it months of incubation? Years? No notion. Not a clue.
posted by Frowner at 9:37 AM on October 19, 2012

Seconding small_ruminant - I have friends who caught it quickly and have recovered fully after antibiotics. I have friend who didn't catch it quickly and have been on antibiotics for years now and seem somewhat better but not at all "back to themselves". You are on the side of "caught it quickly", compared to their timelines. I agree that there is a ton of conflicting information out there.
posted by ldthomps at 10:09 AM on October 19, 2012

My dad got Lyme disease last year. Was getting pretty sick there for a minute. Started his antibiotics and was sick as a freaking dog for about a week. Now he's fine. Something similar happened to a few friends in college.

Then again, a friend of mine had these sort of chronic, poorly differentiated and diffuse symptoms which were apparently rather severe, and she bounced between diagnoses of IBS, CFS, fibro myalgia, and Lyme for quite some time.

Here's the deal. Lyme disease, as such, is a bacterial infection that everyone pretty much agrees about how to treat. You take a course of antibiotics, you frequently get worse before you get better--read up on the Jarisch-Herxheimer reaction, which occurs when large numbers of bacteria die all at once--but you do, in fact, get better. That's uncontroversial.

What's controversial is so-called "chronic" Lyme disease. There are a lot of people with diffuse and widely disparate symptoms, with presentation similar to chronic fatigue or fibro myalgia, two conditions similarly plagued by toxic levels of woo, who believe that their symptoms are related to a previous infection with Lyme disease. Thus far there is no concrete, objective study which confirms this, and most of the reputable epidemiologists and ID researchers who study Lyme do not believe in any connection between these symptoms and Lyme disease proper. But the belief persists.

What seems most likely is that if Lyme goes untreated long enough, the infection can cause permanent damage to various organ systems. This is, unfortunately, pretty common, as the symptoms of Lyme can be pretty subtle and diagnosis is frequently delayed by months or years. So yes, these symptoms may be related to Lyme disease, but taking more antibiotics isn't going to jack squat, because there aren't any bacteria left to kill. The toxins have simply caused irreparable damage which the patient is going to have to live with. Kind of like polio in that respect: just because the viral infection is defeated doesn't mean you can walk again.

The good news is that it's been only a month or so since you were first infected. Everyone I know who's been diagnosed under those circumstances has been back to normal within a week or three.
posted by valkyryn at 10:15 AM on October 19, 2012 [1 favorite]

My whole family, including, I kid you not, the dog have tested positive for Lyme and have received treatment. In the case of my daughter, she too broke out in the "Lyme" rash shortly after treatment. She was sent to a communicable disease specialist specializing in Lyme who informed us that our daughter was allergic to amoxycillin and tired her out on a couple of other antibiotics until he felt comfortable with another one. His initial advice was not to continue treatment at all and not to worry about it, but after a follow up positive test her pediatrician was too nervous and after much wrangling we went with the compromise course of action.

Also the antibiotics gave our dog diarrhea, but we finished the course and got him back to normal.

All family members now test negative.
posted by The 10th Regiment of Foot at 10:24 AM on October 19, 2012

I live (well grew up) in the county that has the highest concentration of deer ticks, and thus the most cases of Lymes, in the U.S. My doctor treats dozens of cases each summer. What he told us is that when you treat Lymes, it goes away completely. It's a bacteria so you're killing the organism. The blood test can react false-positive for months afterwards because the antibodies or something still in your system, so it's not a good way to tell if you "still" have Lymes after a first course of antibiotics. You can get it again -- if you have Lymes, get treated, it goes away, and you get bitten by another deer tick carrying Lymes, you get it again. It's like the flu. Reports of "recurring" cases are 99% people who live in Lymes-prone areas who got a new, distinct infection from a new bite.

I had Lymes. My mom had it twice. We're both fully healed. I know someone who got it 20 years ago (before they really knew what it was), it took them probably a year to diagnose, almost died from it, and after treatment, he's fully recovered. I know someone who *claims* to have lingering symptoms, but she tests negative. Pretty sure she's full of b.s. and attention seeking.

Between me, my mom, and friend #1 (20 year ago case) symptoms included: fatigue, joint pain, mental confusion, 30+ separate skin rashes at once, Bells palsy (one side and both sides of the face), wandering around confused in the middle of the night, etc., etc.

It took a while to fully heal, and I feel like my memory is not as great as it was before hand, but that could easily just be me getting older, stressed out, and overworked.

Specifics:

Case Number One
I had Lymes a few years ago. We caught it a little over a month after I was bitten. I developed 3 separate skin rashes a week or two afterwards. I became completely exhausted, had pain in all my joints, mental confusion, and developed skin rashes everywhere -- easily up to 50% of my skin surface. The rashes grew quickly and covered most of my right forearm, for example. There was swelling underneath, so the slowest thing to heal was my right wrist. From my own research, those rashes show the Lymes was most likely all over my blood stream. I finally went to the doctor (because I was brought up to not go to the doctor until you feel like you're dying, and yes, I felt that way, plus I didn't have insurance). Doctor took 1 look at my rashes and diagnosed -- he said there was no point doing the blood test because it's often not accurate. Put me on a 1 month course of antibiotics (amoxycillin, IIRC). My symptoms started reducing that day, and were basically gone 3 days later. The rest of the course of antibiotics was killer, actually made me throw up twice.

At my follow up visit, the doctor took a look at my wrist and said there was no permanent damage and it would heal on its own. I definitely had lingering pain in that wrist and in my left elbow, both places where the skin rash had surrounded the joint. To this day, if I write a lot (I'm right-handed), my wrist starts to ache (in high school, my fingers would get stiff well before my wrist felt anything). I had lingering tiredness, and my whole system was kind of thrown off. My sleep patterns were definitely screwy, but doc had me take melatonin and this got me back on normal patterns.

Case Number Two
My mom had Lymes twice, a few years apart (once the year before me, the second a year or so ago). The first time was pretty cut and dry -- developed the bullseye, went on antibiotics, healed Lymes but had side-effects from the antibiotics and had fungal infections to deal with afterwards. No lingering symptoms.

The second time, the first thing she got was Bells palsy (yeah, it's fun having your mom call you in the middle of class because half her face was paralyzed). I did some research, and by the time I got her to the doctor that afternoon we thought it was Bells palsy, caused by Lymes. The doctor thought the same (didn't do blood testing, deemed it unnecessary) and prescribed her the antibiotics. Her other (minor) symptoms went away and the Bells palsy healed, mostly in about a month. I think it was 3 months until she could see no difference between the affected and unaffected sides of her face. No lingering symptoms.

Case Number Three

Nothing like a case of Bells palsy at Thanksgiving to get the discussion going, right? Turns out a family friend of ours had Lymes in the early 80s, before it was a thing. It took months, possibly a year, to diagnose, all the while he was getting worse and worse and the doctors trying different things but not knowing what was wrong. I don't remember the specifics, but it culminated in a midnight ER visit when his wife found him wandering their neighborhood with no idea who she was, Bells palsy on both sides of his face, unable to speak. The doctors thought he was going to die.

And then they diagnosed it properly. The infection had reached his nervous system. The treatment included a spinal tap, but they got it. His healing process took about 3 years, and from what he said the only permanent damage was in his face -- the Bells palsy healed, but his face still has a bit of the "droopy" look. Nothing you would know if you weren't comparing before-and-after shots, though, so it's fairly minor as far as permanent damage goes.

Conclusion
Yeah, it sucks. Yeah, the antibiotics are brutal. Yeah, it can be a pretty nasty thing. But should you be freaked out about the diagnosis? Well, probably a little bit. Freak out just as much as will ensure that you take all of the antibiotics according to directions. Because at your stage, that's probably the only thing that will make it so it doesn't completely go away.
posted by DoubleLune at 10:30 AM on October 19, 2012

I had Lyme Disease Meningitis earlier this summer. My wife was the first to suspect that I might have it, but initially my [skeptical] doctor did some tests and found nothing conclusive.

Felt so bad after few more days that I had to go to the ER. After 8 hours of ct scans, blood work, X-rays and miserable waiting time a spinal tap finally confirmed that I had Meningitis. I was admitted to the hospital immediately and put on 2 different antibiotics.

At the time of admission I felt worse than I have ever in my life. Horrible headache, back ache, double vision, every joint feeling off, etc. After about 10 hours of the antibiotics (and morphine) I suddenly felt about 10X better even as that was still 10X worse than feeling normal.

It took about 3 days to confirm that it was Lyme Disease Meningitis. I stayed in hospital for little over 4 days getting antibiotics and morphine through IV. When released I felt beat-up, but certainly didn't fear for my life anymore. I had course of antibiotics through IV (self administered under house care facility) for another month. Double vision persisted for almost 2 weeks, but I was working within a week and traveling with my meds by week 3.

Still have to have brain scan later this year to ensure that no permanent damage or whatnot, but feel fully recovered and according to doctors there shouldn't be a risk of long term problems. I don't know whether I was actually lucky that I developed Meningitis, which meant that every possible test had to be taken. Although we live in an area where Lyme Disease is relatively common and our house/ yard is adjacent to nature preserve with tick carrying deer population. Learned to be much better advocate for own care, but hopefully I won't become hypercondriac for life.
posted by zeikka at 10:32 AM on October 19, 2012

1996: No rash, had flu-like symptoms, woke up one morning with Bell's Palsy. Big dose of antibiotics. Recovery within 6 months.

2001: Flu-like symptoms, woke up one morning with Bell's Palsy. Recovered within 3 weeks.

Apparently I have a weakened facial nerve that is susceptible to stress - I just make sure I am not godalmighty stressed.

As Frowner said upthread, there is a lot of fearmongering online and it's a very vocal minority who seems to be dominating the discourse. The vast, vast majority of people recover just fine.

Memail me if you want to talk.
posted by kariebookish at 10:54 AM on October 19, 2012

As Valkyryn said, and from what I've seen, the "chronic" Lyme problems are more often because of damage done from untreated Lyme disease, rather than Lyme that's received prompt treatment.

No, really- a close friend of mine had a very acute case (seriously impaired motor skills, including speech) several years ago. He had to undergo some pretty serious treatment for the Lyme itself, then months of PT to regain full motor function. He's recovered completely, and been fine Lyme-wise ever since. My mother had a less acute case, underwent treatment, and has also been fine.

Interestingly, I've worked a lot with Lyme disease in livestock, where I've seen plenty of animals with low-level Lyme not receive proper diagnosis or treatment for long periods of time. While some symptoms are relieved with treatment, a lot of things- joint damage being the most noticeable- don't magically get reversed because the Lyme is gone. I've seen neuro symptoms linger, on rare occasion- but this is, again, with cases that had been ongoing for years.

So, yeah- you caught your Lyme pretty early, and you're treating it promptly, so I doubt you'd have any problems once you're cleared from this round. IANAD, but that's what my experience with the disease would indicate.
posted by Cracky at 10:58 AM on October 19, 2012

I don't have Lyme but I do have a chronic disease that is the subject of almost as much internet discussion and (in my opinion) woo as Lyme.

I'm going to really strongly suggest that you stay away from "personal accounts" on the internet and especially any kind of message board or listserv. You've just been diagnosed and you want to know more about it which is totally natural, but stick to reading books, legitimate sources like the Mayo Clinic website, and talking to your doctor. The vast majority of people who are active in internet communities about chronic illness are the people whose lives and identities have been totally taken over by that disease -- sometimes by their own choice. These are the people who have the most severe course of disease, the weirdest side effects, often the worst outlooks, and the most damaging agendas.

What I mean by that is that Lyme (as well as the disease I suffer from) has a whole internet sub-culture that functions pretty much the same way as the 9/11 conspiracy theory movement: what you and authorities believe is WRONG and they are RIGHT and there is SO MUCH EVIDENCE. I personally know people whose lives have been completely upended by getting obsessed with the alternative treatment protocols and who may be suffering even more from a refusal to engage with medical professionals.

Personally, I read a lot of the internet chatter about my disease when I was first diagnosed and it sent me into a totally unjustified and unpleasant depression and fear of the future. A really good friend convinced me to stop and my outlook improved significantly. It sounds like you're getting the right treatment. Read the facts if you care to, otherwise just try to move on and live your life.
posted by telegraph at 11:07 AM on October 19, 2012 [4 favorites]

My son caught lyme when he was 3 or 4 years old. We caught the classic rash right away, and he was flat on the couch or bed with a high fever for a few days (which is saying a lot for an active little boy). He seemed to be fixed with a round of antibiotics. He's almost 14 now, and seems to be fine in every way, developing the normal obnoxious teenage habits. We will see what the future holds.
posted by molasses at 11:10 AM on October 19, 2012

Four siblings of mine (ranging from early teens to mid twenties in age) and both my parents all got Lyme, western blot positive. All of them saw the bullseye and took it from there except for one brother who doesn't know when he got it but started with a week of fever, joint swelling, fatigue... All took the courses of antibiotics and other than varying levels of fatigue and such and GI symptoms from the antibiotics, they were all feeling better within a month or two. No lingering symptoms

For what it's worth, echoing g others above, the only people I know who have lasting neuro and rheumatoid problems are those who didn't catch the diagnosis fairly early on and didn't get checked out until months to years down the road.

Another thing to consider is that many people posting stuff on the web about Lyme do not actually have a positive Lyme diagnosis by blood test and are "symptom diagnosed" who are absolutely convinced they have Lyme and that the doctors are conspiratorial against them or whatever. This is not to say that they don't actually have Lyme - science hasn't figured everything out here - but coming from a family full of undiagnosed rare disease that have seen every medical specialist in the Northeast US, just because something has a bunch of symptoms that seem to line up with a common diagnosis like Lyme, doesn't mean that it actually IS that diagnosis. So, while I'm not discounting personal accounts of struggle with Lyme-like illnesses, but I'm not personally convinced that all of these other symptoms and problems are always definitely related to it, either.
posted by takoukla at 11:57 AM on October 19, 2012

Since you're looking for anecdotes, my brother got Lyme's twice before he was an adult, I've had other family members who have had it multiple times, caught it early and went through the rounds of antibiotics and fatigue and are healthy adults with no issues currently.
posted by inertia at 12:35 PM on October 19, 2012

I had a close friend who got Lyme's disease back in the late 1980s. At the time, it was a very rare and unusual disease. Local doctors in my small town did not know about it really. She had to go to specialists. I think it was diagnosed very late.

She missed a year of school. But, was back to school the next year (though had been left behind a grade).

Years later, she is perfectly fine and healthy. She has two kids and is happily married.

It was a tough illness for her. And I think it was wildly mis-handled because of its rarity at the time - but in the long run, she survived. She is fine today.

Around that same time, another friend was diagnosed with Crohn's disease. He has never been the same since. I am not a doctor, and don't know much about the either disease - but from seeing friends deal with these two illness as a teenager, Lyme's disease is not as bad as some other illness out there.
posted by Flood at 12:45 PM on October 19, 2012

Everyone I know, including all family has had an encounter with Lymes. Since I'm the responsible person, I'm the only one to have had really bad repercussions ;-) I'm usually good at bringing my family to the doctors at the slightest indication, but forgot myself. (we live in deer-land). Anyway. I am completely well now, but discuss with my doctor wether I have a cosmetic problem of part of my face sagging after the infection.
posted by mumimor at 1:09 PM on October 19, 2012

"but I'm concerned that if there IS a biofilm-forming, refractory, brain-eating strain of the disease out there, the failure of the first course of treatment might mean that that's the one I've got. (I know the antibody test should stay positive whether I've got working Borrelia or not, but the new symptoms seem suspicious for ongoing infection... right?) So any anecdotal reassurance (or confirmation :( ) on that front would be awesome, as well."

IAMA Microbiologist, IAMNY Microbiologist, but I can reassure you as one who hasn't gotten so much as a pen from any insurance company, vaccine manufacturer or whomever else is the boogeyman these days that there really is no significant debate on this issue within the scientific community.

There are a lot of big clues that make physicians really suspicious of Chronic Lyme Syndrom (CLS), anything that sticks around after the antibiotics, not mediated by inert, predictable, and non-progressive damage experienced by very few people with disease progressions that were left untreated for extended periods of time, as a disease with non-psychological origins. It fits all of the patterns we’ve seen before over and over again:

-All of the commonly reported symptoms that last more than six months are ones that have been previously individually demonstrated to have purely psychosomatic origins in past culturally mediated epidemics,
-The commonly reported symptoms are amazingly diverse and follow no other pattern, there are no diagnostic criteria beyond patient reports that separate the affected from the unaffected,
-Otherwise logical physiological interventions like continued antibiotic regimens have been demonstrated to have no meaningful placebo-controlled effect with wildly abundant clarity while psychological interventions have been shown to help,
-CLS is epidemic in regions where Lyme disease is not,
-Many of the reported symptoms have no meaningful relationship to symptoms that actual Lyme disease has,
-The majority of those who self-identify as diagnosed with CLS have no substantiated history of having ever contracted Lyme disease,
-And reported symptoms by patients over time have followed patterns where suddenly patients across the country discover similar symptoms at the same time.

At the very least, in addition to any underlying symptoms with non-psychosomatic origins associated with a long term aftermath of Lyme disease there may or may not be, there is a much larger epidemic at work here. Indeed, I would wager that, if such a thing were doable, a particularly unethical researcher could add to the list of symptoms that patients report to their physicians by finding a symptom that has in the past had known psychosomatic and associating it with Chronic Lyme Syndrome on the internet. To be fair, while I would be a surprised if there turned out to be something more to the non-psychosomatic after effects of Lyme Disease than the short term and certainly not progressive neurological damage that has already been characterized, it is at least conceivable. That those effects would encompass anything close to the breadth and diversity of CLS however, is absolutely not.

If you do get Chronic Lyme Syndrome you will have caught it from the internet not a tick, which is not to say that it would be either 'not real' or 'fake' but something that would not make sense to treat with antibiotics or whatever else the snake-oil salesmen keeping this shit alive are selling these days. I myself have a cough that is entirely psychosomatic and is a pain in the ass to deal with. It sounds horrible and deep, it often comes out of nowhere, and it sucks. When people ask me about it, generally wondering if I’m sick or otherwise ok, I usually share the story of where it came from; a camping trip up to Prince Edwards Island when I was 10. That damn island is famous for two things, Anne of Green Gables and its horrendous red dust that kicks up everywhere when the wind gets up; and the wind is always up. While I was there I was really sensitive to the dust and quickly ended up with red snot and hacking up impressive amounts of red sputum. At the same time this provoked what was likely an otherwise harmless viral infection that gave me a brief fever, and when I went home I got better but the cough never went away. When I asked my doctor they figured it was probably scar tissue and told me it may never go away, but that there was really nothing I could do. Eventually I realized that it came and went with stress as well as whenever I thought about it and both this awareness and learning meditation techniques have helped me significantly.

"Part of what has me worried is that I'm fairly sure I got the Lyme erythema-migrans rash AFTER completing my first course of antibiotics"

One of the quirks of our mind body connection it that it is actually fantastically easy to give someone either erythema or migraines by convincing them that they should get one or the other, or even that there is a small chance that they should get either. Seriously, try it on your friends if you're feeling punchy, stupidly easy and more than a bit hilarious in a pranking-acceptable context.

"-- Tips for dealing with docs. I will of course be seeing a rheumatologist ASAP, but I'd like to figure out beforehand exactly how aggressive I need to be about seeking ongoing treatment or assessment."

There that really fine line between effective self advocacy and accepting advice from professionals with orders of magnitude more knowledge - kind of like with dealing with a car mechanic that I've never been that good at negotiating. However, one thing that I think will be important to keep in mind is that "Lyme-literate" folks are incredibly dangerous for physicians to treat, the average doctor is in no way equipped to deal with the kinds of unstable psychological conditions that are generally associated with CLS and they will be taking a meaningful risk by treating you - respecting that will go a long way towards helping you get effective medical care.

"-- And lastly, dynamics of the disease with pregnancy/childbirth (another disputed topic among the experts). This is particularly rotten timing because we were planning on trying for another kid in late November."

There has yet to be one plausible case of mother to child transmission to be ever reported in the medical literature, and it doesn't make a damn bit of sense that there ever would be. If you had enough damage to your reproductive apparatus to let Borrelia through you would have much much bigger problems than Borrelia
posted by Blasdelb at 1:16 PM on October 19, 2012 [13 favorites]

IANYD. I have nothing substantial to add here, I just wanted to say that I love Ask Metafilter because when I saw this thread, I took a deep breath and thought oh lord, I'm gonna have to go in there and spend some time explaining, aren't I.... but I don't have to, because you guys are so good you're all over it! One of the greatest things about this site is how un-susceptible to the woo the community here is.

I shall add my voice to Blasdelb's in saying that I don't think you need to alter your plans to try to conceive based on this in any way.
posted by treehorn+bunny at 2:05 PM on October 19, 2012 [1 favorite]

A friend of mine had it as a child, she took what she describes as "the standard lymes disease meds," and it hasn't showed up since. However, it harmed her already weak respiratory system, so her allergies and asthma became considerably worse.
posted by Grandysaur at 2:31 PM on October 19, 2012

Pretty close friend almost died of it. However 15 years later, she's fine, had two kids, no symptoms at all. Took her about four months to fully get over it, but her heart stopped a couple times, so that was probably more the issue.
posted by lumpenprole at 4:09 PM on October 19, 2012

I had Lyme disease maybe 5 or 6 years ago - I had the rash and swollen lymph nodes and not much else. I had 3 weeks of amoxicillin. I have had some hip stiffness/pain for the last 3 or so years (and I'm 21, so that is pretty unexpected), but nothing truly terrible in the middle-term (my brain is still working, there is no paralysis, I did not die from it, etc.).
posted by smangosbubbles at 5:45 PM on October 19, 2012

I also grew up in an area that has one of the highest concentrations of Lyme in the country, and spent a lot of time in the woods as did most of my friends. Probably most of the people I know from then have had Lyme at least once and often numerous times, as have most of our pets. If caught relatively quickly it's really not bad at all. I haven't studied it but it seems most of the lasting effects were from infections that weren't caught until they had had a long time to do damage. Around here I haven't heard of anyone having trouble with doctors in years - a test followed by doxy seems to be the standard procedure for both humans and animals. And the rash usually shows up early on from what I remember (if it appears).
posted by sepviva at 7:09 PM on October 19, 2012

The Internet is a wonderful and terrible thing.

I had a brutal case of Lyme. It was really terrible. (And for some reason, I had to go to three doctors to get it diagnosed. I was like, "Um I am living on tick-infested Fire Island, I get ticks all the time, I have blotchy rashes, an insanely high fever, and crazy joint pain and partial paralysis down one side of my body" and the first two doctors were like "Huh, wacky, I wonder what that could be." (BIZARRE. Doctors!)

Anyway. Lyme disease is incredibly treatable. This is why people like Martha Stewart are like "Oh I've had it three times, whatever."

Ideas about Lyme are also aflame on the Internet because of the election. (More; more; more.)

"Chronic Lyme" is pretty close to being up there with "vaccines cause autism." (Of course undiagnosed or untreated Lyme is a real thing. Good news: you are being treated and diagnosed. So that does not apply.)

So when you ask about "disease/treatment courses that depart from the 'classic' mold": there are none. You do a course of antibiotics. Sometimes you do another course. There is no "future of inevitable agonizing pain and increasing cognitive dysfunction" if you have been diagnosed and treated. When you say there are "researchers who claim it's a persistent infection that might just never fully clear with current treatments," I would question your (and the Internet's) definition of "researcher."

Ask your doctor about this, after making sure your doctor is a good doctor.

And get your Lyme treated and get pregnant. :)
posted by RJ Reynolds at 5:24 AM on October 20, 2012

Not sure how the previous poster feels qualified to make the above statements, my guess is that he/she is not. . RJ Reynolds says “Chronic Lyme” is pretty close to being up there with “vaccines cause autism”. Well not exactly. This from the Columbia University Medical Center’s Lyme and Tick-Borne Diseases Research Center “To our knowledge, IV Ig has never been studied in a controlled fashion as a treatment for chronic Lyme disease, although some physicians are using this treatment for patients who are thought to have autoimmune-mediated neurologic sequelae from Lyme disease that persist after antibiotic treatment. There is insufficient data at this point to say whether IVIg treatment will have acute or sustained benefit for patients with persistent symptoms after being treated with antibiotics for Lyme disease". Read here .The Columbia site refers to chronic Lyme numerous times on the site and I don’t believe their researchers arrive at work with tin foil on their heads.

RJ’s implication that even the use of the term chronic Lyme is somehow “out there” and analogous to the autism controversy is wrong and incredibly insulting to the legions of people who experience extreme suffering from lasting effects of having had Lyme Disease. The very reason the Internet is flooded with Lyme forums and help groups is the shear number of people affected. The fact that there are many people who wrongly ascribe their symptoms to Lyme in no way negates the fact that there are thousands with legitimate lasting illness caused by Lyme.

RJ continues So when you ask about "disease/treatment courses that depart from the 'classic' mold": there are none. You do a course of antibiotics. Sometimes you do another course. There is no "future of inevitable agonizing pain and increasing cognitive dysfunction" if you have been diagnosed and treated. When you say there are "researchers who claim it's a persistent infection that might just never fully clear with current treatments," I would question your (and the Internet's) definition of "researcher."

Well treatments do indeed depart from the classic mold (reference above linked Columbia article) for those less lucky than RJ who were not cured by a second course of antibiotics and now live in a present of agonizing pain and cognitive dysfunction. Maybe we should find out how Columbia defines researcher.

I take exception to a few of the above posts that reference the woo factor. Frowner said there is a lot of fearmongering online and it's a very vocal minority who seems to be dominating the discourse. The vast, vast majority of people recover just fine. Well how exactly does Frowner know who and what makes up this vocal group? From some sort of research, or just a general opinion? These are such a general statements as to be meaningless. What is the vast majority, 90 percent? Well if a million people contract Lyme Disease, that leaves 100,00 uncured in your vocal minority, people who have often spent years seeing multiple doctors, spent thousands of dollars and in many case experienced untold suffering for decades.

I find that we tend to have a limited capacity for compassion for people with illness in general, but if it’s an illness of a nondescript cause, even family and friends often lose patience.
posted by PaulBGoode at 1:24 AM on November 4, 2012

I just went through that Columbia website and there are a bunch of bizarrely basic things it gets fundamentally wrong, for example in your quote Chronic Lyme is unambiguously a Syndrome and not a Disease. Their model for Chronic Lyme Syndrome is also pretty interesting, but is a model for autoimmune disease that has never actually been demonstrated before.

Our adaptive immune systems work in a really cool way that should, in theory, protect us from an infinite number of potential pathogens but has a few significant drawbacks. As the white blood cells that mediate the adaptive immune response get made they each are born with a completely new antibody through a very randomized process that has a very specific and very random shape on the business end that could, in theory, bind to anything. These antibodies are how our bodies recognize foreign invaders that have some means of evading our innate immune systems, and in theory there are enough white blood cells running around our bodies that one of them will have an antibody that will be effective. One white blood cell though is not enough to meaningfully fight off an infection, and so whenever a mature white blood cell encounters something that triggers its antibody it immediately races back to a lymph node and starts dividing like crazy to make enough cells to eliminate the infection. Then, once the infection is cleared, almost all of the new clones of the effective will trigger themselves for death to make room for new white blood cells. One of the big draw backs to the fantastically complex process that is the adaptive immune system is how long it takes to get going, so a significant portion of them will change in such a way as to protect themselves from degredation and remain as a resevoir of memory cells waiting in case the infection ever comes back such that the process has a big head start the second time. This is the biggest reason why when people get sick with infections they then get better as well as why people don't tend to get sick from the same thing twice.

One of the big problems with that strategy though is what happens when the fundamentally randomly shaped antibody recognizes something that is actually us or for what ever reason actually belongs in us and shouldn't be attacked. Our bodies deal with this by immediately killing all of the white blood cells that are born with an antibody that recognizes a target within the first few weeks of being created, the idea is that if it sees something that quickly its probably something that should be there. During these couple of weeks, white blood cells go through an extensive process of 'education' where the the antigens present in the body that actually belong are paraded in front them to see if any bind. Auto-immune disorders are what happens when this system fails for a variety of reasons and our immune cells start attacking things that are us.

The simplest and most common reason this fails is the violation of 'immune privileged' regions, places in the body that for a variety of reasons the immune system gets shut out of. The classic example of this is Type I diabetes; where the beta cells in the pancreas that regulate blood glucose are naturally hidden away from the immune system but if extraordinarily high fever, mechanical injury, and/or genetic predisposition causes it to be presented to the immune system all at once then there will be white blood cells that recognize these new patterns but haven't been selected against that will see them and mount a catastrophic response.

Their model for how Lyme provokes an auto-immune reaction makes a lot less sense. Their idea is that maybe the antibodies that recognize Borrelia, which grow with their respective white blood cells in response to infection, may be naturally inclined to cross-react with some some native antigen because of a hypothetically similar pattern that Borrelia and a human cell would share. This is not an idea that is original to Lyme, but it is one that doesn't really make sense and hasn't been shown to accurately describe an auto-immune disease. Just think about it, those white blood cells with antibodies that meaningfully cross react with a native antigen should have been selected against well before the Borrelia showed up. This is to say that while the model is certainly possible, its not very plausible, and certainly not nearly as plausible as the mountains of evidence showing various non-Lyme sources of Chronic Lyme Syndrome.

Incidentally, OP, I forgot to send you this review, which is recent and extensive.
posted by Blasdelb at 3:10 AM on November 4, 2012