4 ms·

In my (brief) experience with PTLDS sufferers, there have been a couple of disturbing realizations/experiences: 1) it seems that "chronic lyme specialists" are

by caycep 7y ago

In my (brief) experience with PTLDS sufferers, there have been a couple of disturbing realizations/experiences: 1) it seems that "chronic lyme specialists" are physicians who realized that each patient they diagnose with "chronic lyme" is potentially a cash cow. In that they can be persuaded to pay out of pocket for regimens of IV infusions of antibiotics costing up to tens of thousands of dollars (and which make no antimicrobial sense). For years, because the "spirochete is hiding, round bodies, etc etc". The agents used also make no antimicrobial sense - when we show the med history to ID specialists and PharmD's, they just roll their eyes... 2) As a resident, we had a couple of cases roll through the door of a) temporal lobe epilepsy with mesial temporal sclerosis, b) Parkinson's disease, both pretty clear diagnoses, told by various "chronic lyme specialists" that their symptoms were due to Lyme,taken off their meds and put on strange regimens of IV ceftriaxone (at out of pocket expense) and ending up hospitalized as a result. With such severity that efforts were made to have the state board revoke the medical licenses of these practitioners.

matthewdgreen 7y ago
I don’t doubt everything you’re saying, and that unscrupulous physicians are genuinely taking advantage of their patients. However, as someone with a family member who was recently diagnosed with a (largely untreatable) autoimmune disease, I want to explain why patients become so desperate that they’re willing to try anything. The basic problem here is that anyone who goes online and reads about their condition (eg PTLDS) will find ample scientific evidence that there’s a real condition there — however, a huge majority of medical practitioners aren’t as caught up on the research as their desperate patients, and will often express skepticism that the condition even exists. (Note that this is different from acknowledging the condition is real and being unable to offer a treatment.) This destroys credibility in the conservative medical establishment, and makes it much easier for charlatans to make inroads, simply by acting like they believe the patient. My point here is that a little empathy can go a long way to protecting patients from this outcome.
- stainforth 7y ago
  Doctors are being empathetic when they restrain from pushing the nonsense quacks do, just to satisfy a patient's anxiety, no?
  - jacobr1 7y ago
    In this case we aren't talking about the remedy, but rather the diagnosis. If the doctor doesn't even acknowledge the syndrome is "real" or even further implies it is psychosomatic, it may drive people away from the more rational establishment to the fringe. On the other hand, empathizing with the patient, catching up on the latest research, taking the time to explain it to the patient and their options, is time consuming and hard to do with billing constraints and electronic medical records TPS reports and such. Much easier (for this class of doctor) to dismiss it all as patient self-diagnosis of quackery and move on to the next patient. My mother has lupus and when she first started showing systems her (prior) GP dismissed them out of hand and point symptoms and then started to treat her as somewhat of a malingerer. Ironically, it was her acupuncturist that drove her to see a rheumatologist - who took the time to go through a variety of diagnostics (and recommendation to a new GP and other specialists) to identify the problem and a treatment that let her return to life with things in a more managed state.
- Adrig 7y ago
  You're so right... I've been twice in "medical wandering" where doctors couldn't figure out what I had. First time was IBS years ago when the condition wasn't well known (2 years of pain and loneliness before I knew what I had), second time was for lyme and I'm currently in PTLDS in the middle of the war between the 2 sides. I can't stress enough how angry I am at some doctors I met, that had so little empathy and so much ego. Not only their incompetence allowed my condition to worsen and make the recovery harder and longer, they made me question my sanity and lose hope without caring a little bit about how it would make me feel. If it wasn't for the support of my loved ones, it would have been the loneliness and despair that would have killed me. The only reason I haven't fallen into the "alternative medecine" world is because the ones I have met have been even more bullshit. But at least they cared (and for most, not in a predatory way. They genuinely wanted to help). No wonder so many people can fall into predatory practices when left alone like I was.

by caycep 7y ago

matthewdgreen 7y ago

I don’t doubt everything you’re saying, and that unscrupulous physicians are genuinely taking advantage of their patients. However, as someone with a family member who was recently diagnosed with a (largely untreatable) autoimmune disease, I want to explain why patients become so desperate that they’re willing to try anything. The basic problem here is that anyone who goes online and reads about their condition (eg PTLDS) will find ample scientific evidence that there’s a real condition there — however, a huge majority of medical practitioners aren’t as caught up on the research as their desperate patients, and will often express skepticism that the condition even exists. (Note that this is different from acknowledging the condition is real and being unable to offer a treatment.) This destroys credibility in the conservative medical establishment, and makes it much easier for charlatans to make inroads, simply by acting like they believe the patient. My point here is that a little empathy can go a long way to protecting patients from this outcome.

stainforth 7y ago
Doctors are being empathetic when they restrain from pushing the nonsense quacks do, just to satisfy a patient's anxiety, no?
- jacobr1 7y ago
  In this case we aren't talking about the remedy, but rather the diagnosis. If the doctor doesn't even acknowledge the syndrome is "real" or even further implies it is psychosomatic, it may drive people away from the more rational establishment to the fringe. On the other hand, empathizing with the patient, catching up on the latest research, taking the time to explain it to the patient and their options, is time consuming and hard to do with billing constraints and electronic medical records TPS reports and such. Much easier (for this class of doctor) to dismiss it all as patient self-diagnosis of quackery and move on to the next patient. My mother has lupus and when she first started showing systems her (prior) GP dismissed them out of hand and point symptoms and then started to treat her as somewhat of a malingerer. Ironically, it was her acupuncturist that drove her to see a rheumatologist - who took the time to go through a variety of diagnostics (and recommendation to a new GP and other specialists) to identify the problem and a treatment that let her return to life with things in a more managed state.
Adrig 7y ago
You're so right... I've been twice in "medical wandering" where doctors couldn't figure out what I had. First time was IBS years ago when the condition wasn't well known (2 years of pain and loneliness before I knew what I had), second time was for lyme and I'm currently in PTLDS in the middle of the war between the 2 sides. I can't stress enough how angry I am at some doctors I met, that had so little empathy and so much ego. Not only their incompetence allowed my condition to worsen and make the recovery harder and longer, they made me question my sanity and lose hope without caring a little bit about how it would make me feel. If it wasn't for the support of my loved ones, it would have been the loneliness and despair that would have killed me. The only reason I haven't fallen into the "alternative medecine" world is because the ones I have met have been even more bullshit. But at least they cared (and for most, not in a predatory way. They genuinely wanted to help). No wonder so many people can fall into predatory practices when left alone like I was.