"There's No Medicine for Someone Like You"
May 4, 2009 6:29 PM Subscribe
Under Our Skin: A "dramatic tale of microbes, medicine & money", Under Our Skin looks at the medical, political, and personal controversies surrounding Lyme disease.
The CDC thinks that it is easily cured, but some doctors have risked their licenses and livelihoods or even their freedom treating the disease differently. Lyme has been mysterious and misunderstood for centuries, and that doesn't bode well for the increasing numbers of people contracting the disease each year.
The CDC thinks that it is easily cured, but some doctors have risked their licenses and livelihoods or even their freedom treating the disease differently. Lyme has been mysterious and misunderstood for centuries, and that doesn't bode well for the increasing numbers of people contracting the disease each year.
Post-Lyme disease symptoms and "chronic Lyme disease" - it all looks very murky.
posted by Artw at 7:05 PM on May 4, 2009
posted by Artw at 7:05 PM on May 4, 2009
Uh, so I followed the medical link. Eventually I just gave up - it was like a shell game where I just couldn't figure out where the thesis was hiding. There are these two camps and they disagree. Got it. WHAT DO THEY DISAGREE ON????
And this sentence: "It causes functional, chemical, and structural changes to the brain and alters almost every organ system of the body." The last time I cringed that hard was when little Anakin Skywalker tested positive for Jedi.
posted by Kid Charlemagne at 7:10 PM on May 4, 2009 [5 favorites]
And this sentence: "It causes functional, chemical, and structural changes to the brain and alters almost every organ system of the body." The last time I cringed that hard was when little Anakin Skywalker tested positive for Jedi.
posted by Kid Charlemagne at 7:10 PM on May 4, 2009 [5 favorites]
Even if this does exist, any hypothesized syndrome that lacks any objective diagnostic criteria and has such vague symptoms is going to attract a lot of hypochondriacs. If there is something to this, it must be very frustrating for those who actually suffer from it, as it's likely a majority of their peers aren't.
posted by phrontist at 7:28 PM on May 4, 2009 [1 favorite]
posted by phrontist at 7:28 PM on May 4, 2009 [1 favorite]
The necessity and effectveness of perpepetual antibiotc treatment seems to be one bone of contention - IANAD, but that does sound kind of iffy. As do intravenous infusions of bismuth which kill people.
posted by Artw at 7:29 PM on May 4, 2009
posted by Artw at 7:29 PM on May 4, 2009
> Got it. WHAT DO THEY DISAGREE ON????
This has a better breakdown of some of the basic controversy going on. Some doctors are seeing patients have a relapse in the symptoms of Lyme disease, but since the CDC guidelines don't really address it, they go on to treat it as another illness. Other doctors identify this as a probable Lyme case, and treat it as such, seeing a decrease in symptoms.
One of the single biggest problems with Lyme disease is there is still not a clear and definitive test for the presence of it. Even the PCRs I was taking were prone to lab error (as shown by multiple samples taken the same day and sent to multiple labs coming back with different results), so it came down to a judgement call and analysis of how I was doing combined with the fact that I had multiple and consistent PCRs over time showing a negative reaction for Lyme. That isn't cheap, and it isn't a simple test, and health insurance hates having to pay for them.
Until we can get a refined test that is accurate and accepted by a broader set of doctors as a valid diagnosis for lyme, it is hard to push forward on anything else. A PCR makes sense as a valid diagnostic tool for lyme, instead of looking for antibodies that will show up even if you do not have a current infection of lyme, it is testing for specific DNA associated with the bacteria. It is just extremely complicated, prone to lab errors and contamination, and expensive.
One of the big reasons why the Lyme Vaccine got pulled, in my opinion, was not that it wasn't tested well enough or was effective, but since you couldn't really tell if the people taking the vaccine may already have had Lyme, people were claiming it was making them sick when in fact they were really sick from Lyme. I think a lot of this stems from the fact that when it was first discovered, it was treated as if the entire scope and treatment of the disease was set in stone, and that any deviation from that is because of questionable research or something.
posted by mrzarquon at 7:33 PM on May 4, 2009
This has a better breakdown of some of the basic controversy going on. Some doctors are seeing patients have a relapse in the symptoms of Lyme disease, but since the CDC guidelines don't really address it, they go on to treat it as another illness. Other doctors identify this as a probable Lyme case, and treat it as such, seeing a decrease in symptoms.
One of the single biggest problems with Lyme disease is there is still not a clear and definitive test for the presence of it. Even the PCRs I was taking were prone to lab error (as shown by multiple samples taken the same day and sent to multiple labs coming back with different results), so it came down to a judgement call and analysis of how I was doing combined with the fact that I had multiple and consistent PCRs over time showing a negative reaction for Lyme. That isn't cheap, and it isn't a simple test, and health insurance hates having to pay for them.
Until we can get a refined test that is accurate and accepted by a broader set of doctors as a valid diagnosis for lyme, it is hard to push forward on anything else. A PCR makes sense as a valid diagnostic tool for lyme, instead of looking for antibodies that will show up even if you do not have a current infection of lyme, it is testing for specific DNA associated with the bacteria. It is just extremely complicated, prone to lab errors and contamination, and expensive.
One of the big reasons why the Lyme Vaccine got pulled, in my opinion, was not that it wasn't tested well enough or was effective, but since you couldn't really tell if the people taking the vaccine may already have had Lyme, people were claiming it was making them sick when in fact they were really sick from Lyme. I think a lot of this stems from the fact that when it was first discovered, it was treated as if the entire scope and treatment of the disease was set in stone, and that any deviation from that is because of questionable research or something.
posted by mrzarquon at 7:33 PM on May 4, 2009
I can't speak to the chronic Lyme disease issue, but before you get too worried about Lyme disease in general, take a look at this Lyme disease prevalence map (and another more recent one). There are lots of areas where it's essentially nonexistent; no transmission vector, no disease.
posted by jedicus at 7:35 PM on May 4, 2009
posted by jedicus at 7:35 PM on May 4, 2009
Sites read like any number of fringe disease sites. "I believe I had this disease, and I don't think I'm cured, and it's evil doctors/big pharma/heartless insurance companies fault, they aren't giving me the answers I want, so I'm going to set up a histrionic, fact-light web site to 'prove' I'm right". The idea that "maybe you are wrong" is vilified as being part of the conspiracy. Dunno...maybe they're spot on, but there doesn't seem to be a lot here that's convincing.
P.S. - I had Lyme disease in college. Course of antibiotics, and no ongoing problems. We'll...there's the bad back, the sore knees, this odd problems with my wrist, bit of a tremor. It's called "getting old".
posted by kjs3 at 7:46 PM on May 4, 2009
P.S. - I had Lyme disease in college. Course of antibiotics, and no ongoing problems. We'll...there's the bad back, the sore knees, this odd problems with my wrist, bit of a tremor. It's called "getting old".
posted by kjs3 at 7:46 PM on May 4, 2009
In the Western US, the transmission cycle of the disease is disrupted by the Western Fence lizard. (Though I do try to be good about checking for ticks anyway.)
posted by rtha at 7:58 PM on May 4, 2009 [1 favorite]
posted by rtha at 7:58 PM on May 4, 2009 [1 favorite]
> There are lots of areas where it's essentially nonexistent; no transmission vector, no disease.
Unfortunately, that map is made up of cases only the CDC will officially acknowledge as Lyme disease, and requires a doctor who is able to recognize a tick bite and the symptoms for Lyme. Add to the fact that not everyone develops the bullseye rash and you can see how reporting levels will almost always coincide with education about the illness (and population density, of course). The Northeast is well represented because everyone and their mother knows about Lyme now a days.
My friends father in law was just diagnosed with Lyme out here in Western Washington. It is actually probable he got it while out hunting in Eastern Washington. It was discovered when they finally started doing a broader blood work and investigation into why his heart kept stopping.
Since the illness is not confirmed as being human to human transferable, you can't really base your risk on the reported cases in your area, but on the chance of exposure to ticks (and black legged or deer ticks). Which people should be doing regardless as there are other wonderful illnesses you can get from ticks besides Lyme.
posted by mrzarquon at 8:00 PM on May 4, 2009
Unfortunately, that map is made up of cases only the CDC will officially acknowledge as Lyme disease, and requires a doctor who is able to recognize a tick bite and the symptoms for Lyme. Add to the fact that not everyone develops the bullseye rash and you can see how reporting levels will almost always coincide with education about the illness (and population density, of course). The Northeast is well represented because everyone and their mother knows about Lyme now a days.
My friends father in law was just diagnosed with Lyme out here in Western Washington. It is actually probable he got it while out hunting in Eastern Washington. It was discovered when they finally started doing a broader blood work and investigation into why his heart kept stopping.
Since the illness is not confirmed as being human to human transferable, you can't really base your risk on the reported cases in your area, but on the chance of exposure to ticks (and black legged or deer ticks). Which people should be doing regardless as there are other wonderful illnesses you can get from ticks besides Lyme.
posted by mrzarquon at 8:00 PM on May 4, 2009
And so I don't get too complacent, I should remember the California park ranger and author of Nature Noir, who ended up having to retire because of Lyme.
posted by rtha at 8:01 PM on May 4, 2009
posted by rtha at 8:01 PM on May 4, 2009
> Sites read like any number of fringe disease sites.
I linked to it in one of my earlier comments, but the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center is a bit less fringe.
posted by mrzarquon at 8:03 PM on May 4, 2009
I linked to it in one of my earlier comments, but the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center is a bit less fringe.
posted by mrzarquon at 8:03 PM on May 4, 2009
Actually, reading the "lab tests" page on the Columbia site makes me feel right at home. It's really well written for something aimed at the layman, but I wish they'd put a bit more mechanism information in there.
I'm assuming the gel they show is really loaded with B. burgdorferi lysate (cuz it looks lot like E. coli lysate) which makes me wonder, why doesn't someone purify out the 10 or 12 proteins in question and just use those as the standard, rather than stare at that uncountable tangle of god knows what? Then you could load uniform amounts of everything and not have weird bands lighting up that were homologous with every other bacteria ever.
For those wondering, I've had more than ten years experience waving my hands around in the air while explaining why a western blot DOES NOT show you what antibodies you have present when you probe a membrane loaded with antigen. I am available for children's parties.
posted by Kid Charlemagne at 8:33 PM on May 4, 2009 [1 favorite]
I'm assuming the gel they show is really loaded with B. burgdorferi lysate (cuz it looks lot like E. coli lysate) which makes me wonder, why doesn't someone purify out the 10 or 12 proteins in question and just use those as the standard, rather than stare at that uncountable tangle of god knows what? Then you could load uniform amounts of everything and not have weird bands lighting up that were homologous with every other bacteria ever.
For those wondering, I've had more than ten years experience waving my hands around in the air while explaining why a western blot DOES NOT show you what antibodies you have present when you probe a membrane loaded with antigen. I am available for children's parties.
posted by Kid Charlemagne at 8:33 PM on May 4, 2009 [1 favorite]
My mother helped develop and test the Lyme vaccine, and as she understands it, the reason the vaccine got pulled was because of business assassination. You see, possible side effects from the vaccine included fever and achy joints, so some lawyers figured they could make a quick buck by bringing a class action lawsuit against the drug company behalf of everybody with who got the vaccine and had achy joints. So, they took out a bunch of ads in gardening and outdoorsy-type magazines - the same ones that had been running ads for the vaccine, and the ones where people highest at risk for Lyme and thus the most likely candidates for vaccination - saying how they were bringing a suit against the drug companies for negligence, and there was money in it for anyone who could claim the vaccine caused them problems. Only about 10 people ever responded to the ads (not enough for a suit), but enough people got freaked out that nobody wanted to get vaccinated anymore, and it was not cost-effective to continue running the vaccination program.
posted by Jon_Evil at 11:47 AM on May 5, 2009
posted by Jon_Evil at 11:47 AM on May 5, 2009
My wife got a tick bite last spring and got a rash. After flu-like symptoms, joint pain, etc. she got tested and came out positive for Rocky Mountain Spotted Fever and Lyme Disease. After antibiotics and 3 months of her essentially exhausted, laid up in bed, and miserable, we tried to go to the mainstream infectious disease folks to no avail. They said the original test was a false positive and washed their hands of it. She still is not herself almost a year later. My BS is in Biology so I'm not an idiot about these things and I read up quite a bit. I'm also an amazingly skeptical atheist who is not predisposed to go to alternative medicine treatments. I read Cure Unknown (excellent investigative science journalism from a respected science author ... and Lyme disease sufferer) and a variety of source papers and after all that research and dealing with the infectious disease doctors, I concluded:
* It's extremely likely that the currently accepted mainstream science on Lyme is Bad Science in a lot of cases, and wouldn't hold up well to the scrutiny of the average bright MeFi reader. There's a lot of petty "who discovered what" territorialism going on and clouding the issue. Also, as someone above mentioned, a lot of the maps and statistics are based on an outdated and incorrect definition of one very specific strain of the relevant bacterium.
* OTOH, there are a lot of quacks out there taking advantage of the very sick people who are getting blown off by the mainstream doctors, so that makes it easy to look at this and think "it's all in their heads". But think about it - they're only going to the quacks because the doctors don't know what the hell they are talking about and they're desparate to get better.
* My experience at the UNC Infectious Disease Clinic was ridiculous. The very degreed AIDS doctor who saw my wife was rude, dismissive, and had the "oh geez, another Lyme person" look from the moment we started talking. I had a huge stack of scientific papers with me and she pretty much alternated between dismissing me and saying things that I knew were completely wrong. (News flash: doctors aren't automatically smarter than anyone else.) She said in a sharp voice that there was no Lyme Disease in North Carolina, so my wife must have something else. Dr. House she wasn't.
It's also interesting how the Lyme deniers say people have Chronic Fatigue Syndrome, and the CFS deniers say people have fibromyalgia, and the fibromyalgia deniers say people have chronic depression, and the psychiatrists say there's nothing they can diagnose and the people must have a medical illness like Lyme Disease. Translation: I've been narrowly trained in one tiny branch of science/medicine, and am not capable of working in an interdisciplinary fashion to solve people's health issues or would rather pass the buck. Pfft. Lazy. Maybe if fewer people went to med school as a way to make a comfortable living, we'd have more real scientists in the profession. Anyone remember when AIDS was laughed at as a made-up disease?
posted by freecellwizard at 12:08 PM on May 5, 2009 [4 favorites]
* It's extremely likely that the currently accepted mainstream science on Lyme is Bad Science in a lot of cases, and wouldn't hold up well to the scrutiny of the average bright MeFi reader. There's a lot of petty "who discovered what" territorialism going on and clouding the issue. Also, as someone above mentioned, a lot of the maps and statistics are based on an outdated and incorrect definition of one very specific strain of the relevant bacterium.
* OTOH, there are a lot of quacks out there taking advantage of the very sick people who are getting blown off by the mainstream doctors, so that makes it easy to look at this and think "it's all in their heads". But think about it - they're only going to the quacks because the doctors don't know what the hell they are talking about and they're desparate to get better.
* My experience at the UNC Infectious Disease Clinic was ridiculous. The very degreed AIDS doctor who saw my wife was rude, dismissive, and had the "oh geez, another Lyme person" look from the moment we started talking. I had a huge stack of scientific papers with me and she pretty much alternated between dismissing me and saying things that I knew were completely wrong. (News flash: doctors aren't automatically smarter than anyone else.) She said in a sharp voice that there was no Lyme Disease in North Carolina, so my wife must have something else. Dr. House she wasn't.
It's also interesting how the Lyme deniers say people have Chronic Fatigue Syndrome, and the CFS deniers say people have fibromyalgia, and the fibromyalgia deniers say people have chronic depression, and the psychiatrists say there's nothing they can diagnose and the people must have a medical illness like Lyme Disease. Translation: I've been narrowly trained in one tiny branch of science/medicine, and am not capable of working in an interdisciplinary fashion to solve people's health issues or would rather pass the buck. Pfft. Lazy. Maybe if fewer people went to med school as a way to make a comfortable living, we'd have more real scientists in the profession. Anyone remember when AIDS was laughed at as a made-up disease?
posted by freecellwizard at 12:08 PM on May 5, 2009 [4 favorites]
> She said in a sharp voice that there was no Lyme Disease in North Carolina, so my wife must have something else. Dr. House she wasn't.
I am sorry you've had that experience. Coming from CT atleast the response was "you had it, but we gave you antibiotics like the sheet said, and so therefore you are cured of lyme, the rest of your symptoms are because you are a teenager / depressed / have something else."
North Carolina is not that far of a trek from NY, you may want to try to contact a physician through the Columbia link. I was lucky enough to get diagnosed and treated by one of the main researchers there, so I am a bit biased. Out in Seattle, I've contemplated flying back just to get a checkup, to ensure that my joint pain is actually biomechanical and not Lyme again (which is something as a Lyme sufferer is always at the back of your mind: "Oh God, is this back").
Small side track: my sister and I are always pissed that House always finds the bullseye rash, for once we would want him to find and treat someone who did not have a bullseye rash, but was confirmed via PCR or something.
posted by mrzarquon at 12:18 PM on May 5, 2009 [1 favorite]
I am sorry you've had that experience. Coming from CT atleast the response was "you had it, but we gave you antibiotics like the sheet said, and so therefore you are cured of lyme, the rest of your symptoms are because you are a teenager / depressed / have something else."
North Carolina is not that far of a trek from NY, you may want to try to contact a physician through the Columbia link. I was lucky enough to get diagnosed and treated by one of the main researchers there, so I am a bit biased. Out in Seattle, I've contemplated flying back just to get a checkup, to ensure that my joint pain is actually biomechanical and not Lyme again (which is something as a Lyme sufferer is always at the back of your mind: "Oh God, is this back").
Small side track: my sister and I are always pissed that House always finds the bullseye rash, for once we would want him to find and treat someone who did not have a bullseye rash, but was confirmed via PCR or something.
posted by mrzarquon at 12:18 PM on May 5, 2009 [1 favorite]
« Older War? Well only as a favor to you, George. | Effing Hail: Newer »
This thread has been archived and is closed to new comments
As someone who has dealt with Lyme (and so far has seen a successful recovery) during my teen years, along with my mother and sister also being treated (my sister needing long term IV antibiotic treatment), the quickness of many doctors to write off the illness as something is mind boggling.
I was livid when the doctor I was discussing my past treatment with in Seattle immediately assumed I was diagnosed by a naturopath, assuming that only those outside of "traditional medicine" would resort to such radical treatment (oral antibiotic treatment until PCR and other tests came back negative).
It is a shame, because if diagnosed and identified early, treatment is relatively cheap and easy to handle. Once it gets "under your skin" is when the treatment becomes exorbitantly expensive.
I do not think ever illness or affliction that someone who has or had lyme is immediately the result of the disease, but I have lived through it, I have seen it affect my family, my friends, and I have to believe there is much more to it than what the CDC claims it to be. There is such a huge gap in knowledge between what people who have researched and worked with the illness, and those in the general public. I'd have to say more people probably have a better idea about HIV transmission than how to identify and check for ticks.
On a side note, an independent film, Lymelife has just had a small theatre release. The more this is discussed in the general media, the better in my opinion.
posted by mrzarquon at 7:04 PM on May 4, 2009 [4 favorites]