tag:blogger.com,1999:blog-4073397588746430486.post6705589592516570015..comments2023-10-30T22:11:21.083-10:00Comments on Lyme Disease, Science, And Society: Camp Other: Part One: How A Skeptic Ended Up Seeing An ILADS DoctorCamp Otherhttp://www.blogger.com/profile/10224408965529778101noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4073397588746430486.post-63541756491499857342013-01-30T14:29:58.101-10:002013-01-30T14:29:58.101-10:00Hi Lorima,
I saw a couple doctors in quick succes...Hi Lorima,<br /><br />I saw a couple doctors in quick succession before I saw an LLMD. The doctors worked in the same clinic and filled in for each other. Their belief was that Lyme disease was either rare or didn't exist in the state, and one even said that if someone got Lyme disease they probably contracted it somewhere else (outside the state). <br /><br />The impression I got was they both really thought it was only a New England area disease. They didn't even know it was in the mid-West, let alone the south. It has become a huge issue in Loudon and Virginia - and became more prominent due to Romney's unusual campaign strategy. <br /><br />What I think many people need to know is that a number of areas which are now finally being recognized for being endemic - even by the CDC's standards and not just the state's - already had hot spots before this recognition and people like me were unfortunate in our timing. <br /><br />Now, some places do finally get more recognition for being endemic - but only after a number of us were infected. Given global warming and climate change, more and more doctors are going to need to recognize that patient 0 may be in front of them, presenting with an infection with B. burgdorferi, B. miyamotoi, or B. lonestari and treat it early. <br /><br />This is not to say every presentation of a flu-like illness = Borreliosis - if someone had something else serious like neurological West Nile Virus, that requires acknowledgement and it too is becoming a bigger summertime problem. It's just that doctors have to be on their toes to consider additional differential diagnoses, and that list will grow as vector-borne illnesses expand their range (including babesiosis).<br /><br />And yes - California including Southern California is endemic for Lyme disease - as is the Pacific Northwest. Judging from comments a poster left here some time ago (cave76), Oregon has been particularly bad at acknowledging Lyme disease's presence there and many people apparently go to Washington state or California to get diagnosed and treated.Camp Otherhttps://www.blogger.com/profile/10224408965529778101noreply@blogger.comtag:blogger.com,1999:blog-4073397588746430486.post-91872028252232956412013-01-29T09:05:51.562-10:002013-01-29T09:05:51.562-10:00Hi CO,
Ah, I see. This doctor (or doctors?) who ...Hi CO, <br /><br />Ah, I see. This doctor (or doctors?) who told you LD was rare, and not in the area where you got bitten, were wrong, even according to the CDC's deficient maps of areas of endemicity. <br /><br />So they knew what it is, but they thought...what? probably that it is only in New England and the upper MidWest? I had somebody tell me he advises hikers who hike the Pacific Coast Trail in California, and he's glad there is no LD in California. I corrected him, and then he told me, well, there's no LD in Southern California. I gave up, but to my surprise he later corrected himself - he'd seen a CDC map that gave his area as "moderate" in risk. Lorimanoreply@blogger.comtag:blogger.com,1999:blog-4073397588746430486.post-77775085127621605062013-01-28T13:56:36.601-10:002013-01-28T13:56:36.601-10:00I should add here that at the time I hiked in the ...I should add here that at the time I hiked in the mountains where I went, there were no signs about Lyme disease posted at the trailheads - though there were warnings about poison ivy and ticks in general. <br /><br />I also just wasn't thinking about Lyme disease at the time and was enjoying time with my companion; Lyme wasn't on my radar then, when today it occupies a fair chunk of my time and attention because it entirely changed my life.<br /><br />Even before this, though, in the area I was bitten in there didn't seem to be much of a push for awareness or prevention of Lyme disease. Or maybe there was and I just didn't notice it among so many other things going on. I notice any mention of Lyme disease and ticks today, of course.Camp Otherhttps://www.blogger.com/profile/10224408965529778101noreply@blogger.comtag:blogger.com,1999:blog-4073397588746430486.post-10356635214751622612013-01-28T13:49:19.355-10:002013-01-28T13:49:19.355-10:00Hi Lorima,
The story is I was in an endemic area ...Hi Lorima,<br /><br />The story is I was in an endemic area for Lyme disease. The general area was considered endemic by the CDC's standards and also, the state health department knew it was endemic. Regional entomologists and regional parks knew the area I hiked in was endemic, and signs are posted at the trailheads warning hikers of the presence of ticks and the possibility of Lyme disease. <br /><br />So, the original doctor at the clinic who saw me way ignorant. And me? I knew there might be ticks out there, but I wasn't thinkng about them when I went hiking or thinking about Lyme or what to do about it. I was wearing long pants and boots at the time, but would have anyway - ticks or not. <br /><br />The issue comes down to being in an area where flagging has found a definite risk factor for certain counties but as a whole there is some sort of denial about Lyme being a problem in the state. <br /><br />Consider how Lyme disease is viewed south of Maryland - and to a degree, even Maryland itself. Your pointing out Master's statement is noteworthy. Some people say Lyme doesn't exist south of the Mason-Dixon Line - when it does and there's evidence it does. If doctors believe that, then they need to talk to those who have done the surveillance work and talk to the county and state. <br /><br />I think doctors should diagnose by the EM rash regardless of endemicity because someone can always end up being patient 0. Someone can become the first patient in the county to merit a case and a report.<br /><br />As to pre-test probabilities... If the patient is ill and has a flu they can't seem to shake and isn't getting better and they were fine before they took a hike, washed the dog, gardened all weekend, went hunting, etc. then the issue of a tickborne disease needs to be investigated along with other differentials. Since Lyme is the fastest growing vector based disease and is being found in more counties than before, doctors should at least have a suspicion for it and test when nothing else fits.<br /><br />At this point, clnicians have to look at Borrelia miyamotoi as a possible cause for infection and in some cases even cause for coinfection with Lyme disease. The clinical picture is not going to map to the pretest probability picture for Lyme disease, and miyamotoi is found pretty much where the Ixodes ticks are found. B. lonestari may also cloud the clinical picture in terms of what to do; Lonestar ticks overlap Ioxdes ticks' to some degree and there we are, struggling with yet another Borreliosis.<br /><br />Regardless of pretest probabilities, there are always going to be exceptions. A good doctor will figure this out and do what's necessary to diagnose and tret the patient properly. I did not have a good doctor when it came to the first doctor I saw for Lyme disease - although they may have been good at dealing with other conditions. And I don't know if their inability to do the right thing in my situation was due to what they'd learned in medical school or if the state and county just doesn't bring people up to speed about what actually is known and established fact. Camp Otherhttps://www.blogger.com/profile/10224408965529778101noreply@blogger.comtag:blogger.com,1999:blog-4073397588746430486.post-42943449440166804492013-01-26T08:29:51.365-10:002013-01-26T08:29:51.365-10:00Hi CO,
I'm wondering if maybe you were treate...Hi CO, <br />I'm wondering if maybe you were treated by IDSA guidelines, or at least CDC recommendations, after all. Doctors aren't supposed to diagnose people with Lyme, if they got their tick bite in a non-endemic area. If your area was considered non-endemic according to the CDC (and they recognize a very limited area as endemic), then the doctor isn't even supposed to diagnose based on a bull's-eye rash (remember the dispute over Lyme disease in the south, with Dr. Masters saying EM should be treated, and the CDC saying no, because "there is no Lyme disease in the south"? See Cure Unknown, or follow the papers in PubMed.)<br /><br />They aren't even supposed to order a test if symptoms show up later, because the "pre-test probability" is still below 0.2, and that means any positive tests are more likely to be "false-positives" than true ones. <br /><br />See the CDC's Barbara Johnson's presentation at the IDSA hearings, and Dr. Parsonnet's question to her about what he should do, if someone "obviously has Lyme disease", but they don't add up to having a pre-test probability of over 0.2. He was looking at her quite askance. I suspect he is one of the 4 people who voted against the "Executive Summary", which restricts diagnosis, though I don't know that. <br /><br />I think this is a crock, of course. But it's important to know in detail how the game is being played, even though it is obviously absurd, from a scientific or common-sense standpoint. Lorimanoreply@blogger.comtag:blogger.com,1999:blog-4073397588746430486.post-12496297519704075322012-12-10T22:38:45.037-10:002012-12-10T22:38:45.037-10:00Thanks for pointing out the broken link - soon as ...Thanks for pointing out the broken link - soon as I get to a keyboard that isn't smartphone sized, I will repair it.Camp Otherhttps://www.blogger.com/profile/10224408965529778101noreply@blogger.comtag:blogger.com,1999:blog-4073397588746430486.post-73500259748692291662012-12-10T02:57:11.385-10:002012-12-10T02:57:11.385-10:00The link early on in this post which should take y...The link early on in this post which should take you to a Lymenet Europe discussion, <i>Thoughts re ILADS 2012 Streamed Conference, Dec. 1-2</i>, is incorrect.<br />Here's the correct <a href="http://www.lymeneteurope.org/forum/viewtopic.php?f=7&t=4383" rel="nofollow">link</a>.Rick L.https://www.blogger.com/profile/15967728635739822562noreply@blogger.com