8 ms·

If you are suffering from neurological repercussions of Lyme Disease, please see a neurologist (not just a GP). I did, got on a steady regimen of Amitriptyline

If you are suffering from neurological repercussions of Lyme Disease, please see a neurologist (not just a GP). I did, got on a steady regimen of Amitriptyline and Naproxen, and nearly all of my post-Lyme symptoms (migraines, light sensitivities, lethargy) have cleared out. It's a horrible disease; I wish our government was taking it seriously in the slightest.

deleted 11y ago
[deleted]
- ghaff 11y ago
  Well, public health would seem to be pretty much the textbook definition of a governmental function even if you generally favor less government rather than more. As a resident of a high Lyme disease-incidence state who does a lot of outdoors activities, I find it annoying (though that's not really the right word) that we know how to make Lyme vaccines, and in fact give them to dogs, but there seems little urgency in providing them to humans. The previously approved vaccine (Lymerix) was admittedly not the most effective and possibly had some incidence of (never statistically linked) side effects. However, given the rapid increase of Lyme cases in certain areas, this seems like a case where the government could fairly easily make a vaccine available for what is clearly a public health problem.
  - melling 11y ago
    I'm all for government funding lots of research for health, science, etc. My desire is for people to also figure out ways to also contribute in other ways to have more citizen sponsored research, for example. We have Kickstarter projects that need $2 million to be funded. https://www.kickstarter.com/projects/ysnet/shenmue-3 https://www.kickstarter.com/projects/ysnet/shenmue-3 How about a way for people to sponsor medical research or basic science in an effective manner? A lot of money that goes into some charities is used for marketing to grow even bigger.
    - untog 11y ago
      You are trolling, correct? Someone says that the government should fund research into Lyme disease, and you post a link to an RPG on Kickstarter? How about a way for people to sponsor medical research or basic science in an effective manner? Because people have _no idea_ what to sponsor, and really, nor can we expect every individual to do the level of research required to make sure their money is invested properly. People have jobs and lives. It's much better for us to collectively invest in a single pot, and give a body (say, a government) the ability to appoint someone whose job it is to effectively invest it.
      - deleted 11y ago
        [deleted]
      - melling 11y ago
        Nah, I just have a bit more vision. People in the U.S. gave $358 billion in 2015. https://philanthropy.com/interactives/giving-usa-2015 https://philanthropy.com/interactives/giving-usa-2015 Your opinion is the status quo. Hopefully, someone less narrow minded will come along.
    - ghaff 11y ago
      Well, there are all the charities related to various diseases so arguably what you're asking for already exists--and is tax deductible to boot. As you suggest, some of these spend a large proportion of their budgets soliciting donations. But those numbers are publicly available. I'm not sure why/how raising funds through a kickstarter would be a fundamentally different dynamic. It still wouldn't really work for individual researchers to use crowdsourcing for a variety of reasons, including the fact that potential funders are really not in the position to judge whether a proposal makes sense or not.
      - melling 11y ago
        I didn't say start a Kickstarter. That was used as an example of how crowd funding is used to raise a lot of money. Anyway, it was only meant to start the conversation. You weren't suppose to tell me what was wrong with my straw man but offer a solution that's much better. Anyway, we aren't going to change the world today so let's end this and just wait until the Elon Musk of medical research appears.
- deleted 11y ago
  [deleted]
- navait 11y ago
  > Things can work much quicker and more efficiently when people with a little passion work on difficult problems. Like NIH researchers?
- pasbesoin 11y ago
  I have a friend who has been a many-year sufferer and is now an advocate. Admittedly, I haven't paid the full attention I might have; nonetheless, some knowledge and reporting has seeped in. Understand that doctors have been disbarred and prosecuted for pursuing Lyme treatments that go "off protocol", even when the patient is clearly still sick and when they are carefully pursuing the best understanding and treatment they can obtain. Insurance companies refuse to pay for treatment, and "mainstream" medical practitioners with little or limited understanding refuse to pursue further treatment. For example, testing for Lyme infection is tricky, unreliable, and multi-stage. However, a doctor will administer one test in the initial stage. When it comes back negative, they declare "Well, you can't have Lyme disease." While in reality such a negative result is far from conclusive. Good luck, then or at all, getting your insurance company to pay for further treatment. And, most of us have insurance because we don't have enormous liquid reserves to pursue such things independently. In other cases, a diagnosis is made and a single course of treatment pursued. The doctor considers one such course of treatment to be 100% effective. For patients who continue to have symptoms -- and it's now well-known that Lyme presents chronic cases that are highly resistant to treatment -- they are told that, following such a treatment, "it can't be Lyme disease." Some recent reporting I heard had an expert estimate that with the U.S. government (i.e. the CDC et al.) finally considering a re-interpretation of their identification of Lyme disease, the number of cases formally identified may increase ten-fold. So... there really is something to wishing that the government would take this disease more seriously. And... I wish more medical professionals would drop the "absence of evidence is evidence of absence" fallacy. So often, "certainty" proves over the long term to be anything but, in the field. Remember when they were telling us to switch to (partially hydrogenated) margarine? Or to forgo all fat? Sodium? Coffee?...
  - wl 11y ago
    The problem is you've got patients who have run out of options. Maybe they've got some complicated autoimmune disorder that medicine hasn't even begun to understand. Maybe the patient is just getting older. But the mainstream physicians don't have acceptable solutions or sometimes even good answers. "Lyme literate" medicine practitioners then offer an explanation and a possible treatment, regardless of whether or not the patient actually has Lyme disease. There's even a lab that will do a four month long blood culture + PCR for borrelia to give that official positive diagnosis when the immunoblot comes back inconclusive, despite the incredible false positive rate with the culture. For those who aren't looking to use the Lyme hammer to explain and treat everything that can't be explained by conventional diagnosis, Lyme disease is well understood. The standard antibiotic therapy is very effective at stopping the infection. If treatment is delayed too long, there are lingering symptoms that are difficult to treat. There is no evidence that IV antibiotic therapy for years at a time provides any benefit and much evidence that it harms patients. People haven't lost their medical licenses for prescribing such therapy because of some great conspiracy. People have lost their licenses for administering treatments that clearly harm their patients without any benefit while charging large amounts of money for it. It's quackery.
navait 11y ago
I have no idea if you are American, but the US government does take it quite seriously. Lyme is a major research project within NIAID. Multiple branches of the federal(Park Service, Army, CDC) have prevention programs, in all adding up to $90 millon/ year in expidentures dedicated to lyme. This does not include state health programs, which also help diagnose lyme disease. To be fair, we could be doing more. http://www.niaid.nih.gov/topics/lymeDisease/research/Pages/research.aspx http://www.niaid.nih.gov/topics/lymeDisease/research/Pages/r...

deleted 11y ago

[deleted]

ghaff 11y ago
Well, public health would seem to be pretty much the textbook definition of a governmental function even if you generally favor less government rather than more. As a resident of a high Lyme disease-incidence state who does a lot of outdoors activities, I find it annoying (though that's not really the right word) that we know how to make Lyme vaccines, and in fact give them to dogs, but there seems little urgency in providing them to humans. The previously approved vaccine (Lymerix) was admittedly not the most effective and possibly had some incidence of (never statistically linked) side effects. However, given the rapid increase of Lyme cases in certain areas, this seems like a case where the government could fairly easily make a vaccine available for what is clearly a public health problem.
- melling 11y ago
  I'm all for government funding lots of research for health, science, etc. My desire is for people to also figure out ways to also contribute in other ways to have more citizen sponsored research, for example. We have Kickstarter projects that need $2 million to be funded. https://www.kickstarter.com/projects/ysnet/shenmue-3 https://www.kickstarter.com/projects/ysnet/shenmue-3 How about a way for people to sponsor medical research or basic science in an effective manner? A lot of money that goes into some charities is used for marketing to grow even bigger.
  - untog 11y ago
    You are trolling, correct? Someone says that the government should fund research into Lyme disease, and you post a link to an RPG on Kickstarter? How about a way for people to sponsor medical research or basic science in an effective manner? Because people have _no idea_ what to sponsor, and really, nor can we expect every individual to do the level of research required to make sure their money is invested properly. People have jobs and lives. It's much better for us to collectively invest in a single pot, and give a body (say, a government) the ability to appoint someone whose job it is to effectively invest it.
    - deleted 11y ago
      [deleted]
    - melling 11y ago
      Nah, I just have a bit more vision. People in the U.S. gave $358 billion in 2015. https://philanthropy.com/interactives/giving-usa-2015 https://philanthropy.com/interactives/giving-usa-2015 Your opinion is the status quo. Hopefully, someone less narrow minded will come along.
  - ghaff 11y ago
    Well, there are all the charities related to various diseases so arguably what you're asking for already exists--and is tax deductible to boot. As you suggest, some of these spend a large proportion of their budgets soliciting donations. But those numbers are publicly available. I'm not sure why/how raising funds through a kickstarter would be a fundamentally different dynamic. It still wouldn't really work for individual researchers to use crowdsourcing for a variety of reasons, including the fact that potential funders are really not in the position to judge whether a proposal makes sense or not.
    - melling 11y ago
      I didn't say start a Kickstarter. That was used as an example of how crowd funding is used to raise a lot of money. Anyway, it was only meant to start the conversation. You weren't suppose to tell me what was wrong with my straw man but offer a solution that's much better. Anyway, we aren't going to change the world today so let's end this and just wait until the Elon Musk of medical research appears.
deleted 11y ago
[deleted]
navait 11y ago
> Things can work much quicker and more efficiently when people with a little passion work on difficult problems. Like NIH researchers?
pasbesoin 11y ago
I have a friend who has been a many-year sufferer and is now an advocate. Admittedly, I haven't paid the full attention I might have; nonetheless, some knowledge and reporting has seeped in. Understand that doctors have been disbarred and prosecuted for pursuing Lyme treatments that go "off protocol", even when the patient is clearly still sick and when they are carefully pursuing the best understanding and treatment they can obtain. Insurance companies refuse to pay for treatment, and "mainstream" medical practitioners with little or limited understanding refuse to pursue further treatment. For example, testing for Lyme infection is tricky, unreliable, and multi-stage. However, a doctor will administer one test in the initial stage. When it comes back negative, they declare "Well, you can't have Lyme disease." While in reality such a negative result is far from conclusive. Good luck, then or at all, getting your insurance company to pay for further treatment. And, most of us have insurance because we don't have enormous liquid reserves to pursue such things independently. In other cases, a diagnosis is made and a single course of treatment pursued. The doctor considers one such course of treatment to be 100% effective. For patients who continue to have symptoms -- and it's now well-known that Lyme presents chronic cases that are highly resistant to treatment -- they are told that, following such a treatment, "it can't be Lyme disease." Some recent reporting I heard had an expert estimate that with the U.S. government (i.e. the CDC et al.) finally considering a re-interpretation of their identification of Lyme disease, the number of cases formally identified may increase ten-fold. So... there really is something to wishing that the government would take this disease more seriously. And... I wish more medical professionals would drop the "absence of evidence is evidence of absence" fallacy. So often, "certainty" proves over the long term to be anything but, in the field. Remember when they were telling us to switch to (partially hydrogenated) margarine? Or to forgo all fat? Sodium? Coffee?...
- wl 11y ago
  The problem is you've got patients who have run out of options. Maybe they've got some complicated autoimmune disorder that medicine hasn't even begun to understand. Maybe the patient is just getting older. But the mainstream physicians don't have acceptable solutions or sometimes even good answers. "Lyme literate" medicine practitioners then offer an explanation and a possible treatment, regardless of whether or not the patient actually has Lyme disease. There's even a lab that will do a four month long blood culture + PCR for borrelia to give that official positive diagnosis when the immunoblot comes back inconclusive, despite the incredible false positive rate with the culture. For those who aren't looking to use the Lyme hammer to explain and treat everything that can't be explained by conventional diagnosis, Lyme disease is well understood. The standard antibiotic therapy is very effective at stopping the infection. If treatment is delayed too long, there are lingering symptoms that are difficult to treat. There is no evidence that IV antibiotic therapy for years at a time provides any benefit and much evidence that it harms patients. People haven't lost their medical licenses for prescribing such therapy because of some great conspiracy. People have lost their licenses for administering treatments that clearly harm their patients without any benefit while charging large amounts of money for it. It's quackery.

navait 11y ago

I have no idea if you are American, but the US government does take it quite seriously. Lyme is a major research project within NIAID. Multiple branches of the federal(Park Service, Army, CDC) have prevention programs, in all adding up to $90 millon/ year in expidentures dedicated to lyme. This does not include state health programs, which also help diagnose lyme disease. To be fair, we could be doing more. http://www.niaid.nih.gov/topics/lymeDisease/research/Pages/research.aspx http://www.niaid.nih.gov/topics/lymeDisease/research/Pages/r...