4 ms·

How about testing for Lyme again? How to find an LLMD (Lyme Literate Medical Doctor) http://www.chroniclymedisease.com/llmd-referrals http://www.chroniclymedi

How about testing for Lyme again? How to find an LLMD (Lyme Literate Medical Doctor) http://www.chroniclymedisease.com/llmd-referrals http://www.chroniclymedisease.com/llmd-referrals

phreanix 16y ago
yeah, wondering about this. Quite a few people (including myself) pointed it out. Please keep us updated and good luck.
carbocation 16y ago
For anyone reading this at some point in the future: this stuff is complete garbage and has been repudiated not only by the medical establishment broadly, but also specifically by the doctor who discovered Lyme disease's causative agent.
- adrianwaj 16y ago
  Supporting evidence? What's it about Lyme that people would make this stuff up? The medical establishment still practices medicine. Practice being the operative word.
  - carbocation 16y ago
    Supporting evidence that the claims of Lyme advocacy groups aren't backed up? Well, that's just it - there is no evidence that supports their claims. There is just anecdote that stands in conflict with biochemical and/or commonly agreed upon diagnostic criteria. Allen Steere's wikipedia page gives a nice introduction to the controversy: http://en.wikipedia.org/wiki/Allen_Steere http://en.wikipedia.org/wiki/Allen_Steere Why did chronic Lyme become a grab bag? I don't know for sure - it did so before I entered medical school, and in medical school we actually don't waste too much time (or perhaps we spend too little) talking about quackery. Rejecting the CDC's diagnostic criteria and creating their own -- and, conveniently, profiting from doing so -- makes me immediately hypervigilant around physicians who claim to treat "chronic Lyme." In fact, just today I listened to an hourlong talk today by Allen Steere at MGH about Lyme disease, and he very clearly laid out what Stage 3 Lyme disease looks like: basically, arthritis +/- neurological deficits. "Chronic Lyme" is distinguished from Stage 3 Lyme disease by being a grabbag diagnosis without accepted, objective diagnostic criteria. Multiple randomized controlled trials have been attempted on patients with "chronic Lyme," and in none of these trials did treatment with antibiotics help. The disease that these people are suffering from is, no doubt, real, but it is not caused by chronic, persistent infection with Borrelia burgdoferi, and it is not helped by antibiotics.
    - adrianwaj 16y ago
      I think the key here is to establish chemical diagnosis from clinical diagnosis. There was a vaccine developed for Lyme but since withdrawn. I'd say that Lyme as a chemical condition and subsequent symptoms does exist. But then there are other people that wrongly attribute their problems to Lyme, or there are people with real Lyme that don't all respond consistently to antibiotics. So it has since moved into the too hard or too misunderstood basket. Lyme exists: so what, if doctors (and patients/sufferers) can't get a grip on it, that's part of life too. So you have this guy here who said he was diagnosed with Lyme and was treated for a year and did not improve, and is now not answering questions about Lyme. edit: I bet some doctor's (or the doctor that prescribed) told him that Lyme doesn't exist, or you couldn't have it after all those antibiotics... etc and that's why he's so excited about a Celiac diagnosis (or rather anything but Lyme), because it means he can sweep Lyme under the rug, exactly like the doctor. But it won't help him though, and the doctor who told him to forget about Lyme ultimately doesn't care because he's not the one with it. The edge of science is a fuzzy place, but some people are pushed right up to it!
      - carbocation 16y ago
        For Lyme disease, you literally cannot disentangle the biological diagnosis from the clinical diagnosis. Why? Lyme titers can stay positive indefinitely because you do not measure borrelia directly. It's a spirochete, so this is completely understandable. Once you get infected one time, you will make antibody for years, or indefinitely. This is why the CDC requires biochemical evidence and the right clinical context. Nobody is saying Lyme doesn't exist. Most doctors have diagnosed Lyme - there are over 30,000 reported cases annually. It's neither rare nor controversial. I am saying that Stage 3 Lyme has a specific set of symptoms that are inconsistent with what savemylife describes. Allen Steere is saying that "chronic Lyme" is not an infectious disease caused by borrelia. Savemylife's Lyme diagnosis was done only biochemically, which is not consistent with the CDC diagnostic criteria for reasons I described above. He was then treated for a year - a risky proposition in itself - and was unhelped. Spirochetes are notoriously susceptible to antibiotics. If you only take one dose of doxy, you cure ~75% of all Lyme cases. It's that easy! After 2 weeks of doxy, the cure rate is nearly 100%. After a year, you are simply eradicating native gut flora. He does not have Lyme disease. He has a real problem; this is not it, and pushing him towards sexy, grabbag, but clearly incorrect diagnostic labels helps nobody.

How about testing for Lyme again? How to find an LLMD (Lyme Literate Medical Doctor) http://www.chroniclymedisease.com/llmd-referrals http://www.chroniclymedisease.com/llmd-referrals

phreanix 16y ago

yeah, wondering about this. Quite a few people (including myself) pointed it out. Please keep us updated and good luck.

carbocation 16y ago

For anyone reading this at some point in the future: this stuff is complete garbage and has been repudiated not only by the medical establishment broadly, but also specifically by the doctor who discovered Lyme disease's causative agent.

adrianwaj 16y ago
Supporting evidence? What's it about Lyme that people would make this stuff up? The medical establishment still practices medicine. Practice being the operative word.
- carbocation 16y ago
  Supporting evidence that the claims of Lyme advocacy groups aren't backed up? Well, that's just it - there is no evidence that supports their claims. There is just anecdote that stands in conflict with biochemical and/or commonly agreed upon diagnostic criteria. Allen Steere's wikipedia page gives a nice introduction to the controversy: http://en.wikipedia.org/wiki/Allen_Steere http://en.wikipedia.org/wiki/Allen_Steere Why did chronic Lyme become a grab bag? I don't know for sure - it did so before I entered medical school, and in medical school we actually don't waste too much time (or perhaps we spend too little) talking about quackery. Rejecting the CDC's diagnostic criteria and creating their own -- and, conveniently, profiting from doing so -- makes me immediately hypervigilant around physicians who claim to treat "chronic Lyme." In fact, just today I listened to an hourlong talk today by Allen Steere at MGH about Lyme disease, and he very clearly laid out what Stage 3 Lyme disease looks like: basically, arthritis +/- neurological deficits. "Chronic Lyme" is distinguished from Stage 3 Lyme disease by being a grabbag diagnosis without accepted, objective diagnostic criteria. Multiple randomized controlled trials have been attempted on patients with "chronic Lyme," and in none of these trials did treatment with antibiotics help. The disease that these people are suffering from is, no doubt, real, but it is not caused by chronic, persistent infection with Borrelia burgdoferi, and it is not helped by antibiotics.
  - adrianwaj 16y ago
    I think the key here is to establish chemical diagnosis from clinical diagnosis. There was a vaccine developed for Lyme but since withdrawn. I'd say that Lyme as a chemical condition and subsequent symptoms does exist. But then there are other people that wrongly attribute their problems to Lyme, or there are people with real Lyme that don't all respond consistently to antibiotics. So it has since moved into the too hard or too misunderstood basket. Lyme exists: so what, if doctors (and patients/sufferers) can't get a grip on it, that's part of life too. So you have this guy here who said he was diagnosed with Lyme and was treated for a year and did not improve, and is now not answering questions about Lyme. edit: I bet some doctor's (or the doctor that prescribed) told him that Lyme doesn't exist, or you couldn't have it after all those antibiotics... etc and that's why he's so excited about a Celiac diagnosis (or rather anything but Lyme), because it means he can sweep Lyme under the rug, exactly like the doctor. But it won't help him though, and the doctor who told him to forget about Lyme ultimately doesn't care because he's not the one with it. The edge of science is a fuzzy place, but some people are pushed right up to it!
    - carbocation 16y ago
      For Lyme disease, you literally cannot disentangle the biological diagnosis from the clinical diagnosis. Why? Lyme titers can stay positive indefinitely because you do not measure borrelia directly. It's a spirochete, so this is completely understandable. Once you get infected one time, you will make antibody for years, or indefinitely. This is why the CDC requires biochemical evidence and the right clinical context. Nobody is saying Lyme doesn't exist. Most doctors have diagnosed Lyme - there are over 30,000 reported cases annually. It's neither rare nor controversial. I am saying that Stage 3 Lyme has a specific set of symptoms that are inconsistent with what savemylife describes. Allen Steere is saying that "chronic Lyme" is not an infectious disease caused by borrelia. Savemylife's Lyme diagnosis was done only biochemically, which is not consistent with the CDC diagnostic criteria for reasons I described above. He was then treated for a year - a risky proposition in itself - and was unhelped. Spirochetes are notoriously susceptible to antibiotics. If you only take one dose of doxy, you cure ~75% of all Lyme cases. It's that easy! After 2 weeks of doxy, the cure rate is nearly 100%. After a year, you are simply eradicating native gut flora. He does not have Lyme disease. He has a real problem; this is not it, and pushing him towards sexy, grabbag, but clearly incorrect diagnostic labels helps nobody.