3 ms·

It's unclear whether this will generally be used to investigate (and ultimately take seriously) the documented but poorly understood chronic suffering which rar

by jMyles 6y ago

It's unclear whether this will generally be used to investigate (and ultimately take seriously) the documented but poorly understood chronic suffering which rarely but really affects a sliver of people who've recovered from various viruses. The other four endemic coronaviruses, while often called "common colds" (and make up perhaps 1/5 common cold cases) have all been documented having similar lingering cardiovascular effects in a similar miniscule segment of the population. Search your favorite repository of scientific literature for "{hku1|229e|oc43|nl63} cardiovascular" for example - you'll be amazed at how similar case reports are to what we're seeing from SARS-CoV-2. However, to my knowledge (and to the best I can tell from searching Google Scholar), the phrase 'long Covid' has never been used to describe this phenomenon. In fact, it seems that sufferers are often ignored. So it is with other mysterious chronic after-effects from illness - 'chronic lyme disease' is something I imagine has touched someone in each of our networks. It's obvious that this phenomenon is super rare. However, when you have viruses (and other pathogens) which ultimately infect nearly everyone on the planet, these cases add up. It's not right that sufferers have been ignored these decades, and if this is a genuine effort to right that wrong, I applaud it. If on the other hand it's just another attempt to justify bizarre restrictions instead of resources to help these same sufferers, then that's just cruel. We saw a similar happening with hospital census last year: sensational media and pundit scientists (but vanishingly few actual experts) threw bombastic fits over hospitals being overcrowded, as they almost always are, especially in underserved communities, at the peak time of the year. And was this a rallying cry to provide more resources for marginalized communities and the hospitals that serve them? Seemingly not; it was instead a pathetic attempt at justifying interventions which by then were already unambiguously ineffective, like stay-at-home orders. And now we're not even talking about it. These hospital systems and the communities they serve will not be helped; the conversation has moved on. The best thing we can do is to take seriously the experts who have credibly drawn attention to this for the past couple of decades and continued to do so in covid times. People like Stefan Baral, Sunetra Gupta, John Ioannidis, Monica Gandhi, Vinay Prasad, etc. Subsequent pandemics may leave less room for reflection, so this is the time to get these things straightened out.

nickthemagicman 6y ago
There's always a small percentage of people who have side effects from any biological changes to their body. People have permanent side effects from taking medicine. It seems strange to focus on Covid specifically, when all manner of biological changes to people's bodies cause a small subset of people to have permanent side effects.
garyrob 6y ago
"'chronic lyme disease' is something I imagine has touched someone in each of our networks." My wife, a retinal surgeon, lost her career due to it. She was pretty much unable to function at a professional level for several years, until she was cured with disulfiram. https://www.lymedisease.org/disulfiram-kinderlehrer/ https://www.lymedisease.org/disulfiram-kinderlehrer/
- jMyles 6y ago
  Wow, it gives me joy to hear about her relief! I know someone with whom I'm going to share your story right away. I hope that this kind of chronic suffering (and the possibility for therapies) is the outcome of our discussions about long-covid, rather than pretending that this is a novel phenomenon in order to score political points.
  - garyrob 6y ago
    I suggest reading the article I linked. It talks about Dr. Ken Liegner. He just happened to be my wife's Lyme doctor, and I'm pretty sure my wife was one of the 30 patients mentioned in the article. My son was another of them. (I didn't mention him in my original post because I wanted to keep it simple and short. But now that you've expressed this interest...) My son was basically unable to function for his last year of high school and had to take a year off before going to college because of it. He, too, got on disulfiram and it cured him. He had been on heavy duty antibiotics. At one point. We hypothesized that maybe the Lyme was cured, and it was the treatment that was making him feel so terrible. So we took him off the antibiotics. (This is with Dr. Liegner's consent; he thought it was worth trying.) A week later, my son felt better than he had in a couple years. Another week later, and he was starting to feel sick again. Another week later, he had all his lyme symptoms back and went back on the antibiotics, which helped but didn't cure. Disulfiram cured both of them. BUT!!!!! The disulfiram was a very tough treatment. Near the end of the planned multi-month course of disulfiram, I had to take my son to the ER because he was borderline hallucinating. As I said, it was near the end of the planned treatment anyway, so we took him off it. He immediately started feeling better. This is consistent with what you'll read in the article about psychological effects from the disulfiram. And he was cured of his chronic Lyme. Period. The Lyme symptoms were gone and they stayed gone. I think Dr. Liegner may now being doing smaller daily disulfiram doses for a longer time, in order to avoid these affects. My wife and son were (probably) among the first 30 people to ever have this treatment, and so it is a lot better understood now. It might be a good idea for your friend to give Dr. Liegner's office a call. He's in Pawling, NY. He's expensive and not in a convenient location for most people. We lived in Bangor ME, and drove 7 hours each way for every appointment with him. Well worth it. And he's probably Zooming now for at least a portion of the necessary appointments. Please let me know if anything positive comes from our exchange of messages here, I'd love to know that it had been of use! Or write if you or your friend would like any other info. garyrob at me.com.

by jMyles 6y ago

nickthemagicman 6y ago

There's always a small percentage of people who have side effects from any biological changes to their body. People have permanent side effects from taking medicine. It seems strange to focus on Covid specifically, when all manner of biological changes to people's bodies cause a small subset of people to have permanent side effects.

garyrob 6y ago

"'chronic lyme disease' is something I imagine has touched someone in each of our networks." My wife, a retinal surgeon, lost her career due to it. She was pretty much unable to function at a professional level for several years, until she was cured with disulfiram. https://www.lymedisease.org/disulfiram-kinderlehrer/ https://www.lymedisease.org/disulfiram-kinderlehrer/

jMyles 6y ago
Wow, it gives me joy to hear about her relief! I know someone with whom I'm going to share your story right away. I hope that this kind of chronic suffering (and the possibility for therapies) is the outcome of our discussions about long-covid, rather than pretending that this is a novel phenomenon in order to score political points.
- garyrob 6y ago
  I suggest reading the article I linked. It talks about Dr. Ken Liegner. He just happened to be my wife's Lyme doctor, and I'm pretty sure my wife was one of the 30 patients mentioned in the article. My son was another of them. (I didn't mention him in my original post because I wanted to keep it simple and short. But now that you've expressed this interest...) My son was basically unable to function for his last year of high school and had to take a year off before going to college because of it. He, too, got on disulfiram and it cured him. He had been on heavy duty antibiotics. At one point. We hypothesized that maybe the Lyme was cured, and it was the treatment that was making him feel so terrible. So we took him off the antibiotics. (This is with Dr. Liegner's consent; he thought it was worth trying.) A week later, my son felt better than he had in a couple years. Another week later, and he was starting to feel sick again. Another week later, he had all his lyme symptoms back and went back on the antibiotics, which helped but didn't cure. Disulfiram cured both of them. BUT!!!!! The disulfiram was a very tough treatment. Near the end of the planned multi-month course of disulfiram, I had to take my son to the ER because he was borderline hallucinating. As I said, it was near the end of the planned treatment anyway, so we took him off it. He immediately started feeling better. This is consistent with what you'll read in the article about psychological effects from the disulfiram. And he was cured of his chronic Lyme. Period. The Lyme symptoms were gone and they stayed gone. I think Dr. Liegner may now being doing smaller daily disulfiram doses for a longer time, in order to avoid these affects. My wife and son were (probably) among the first 30 people to ever have this treatment, and so it is a lot better understood now. It might be a good idea for your friend to give Dr. Liegner's office a call. He's in Pawling, NY. He's expensive and not in a convenient location for most people. We lived in Bangor ME, and drove 7 hours each way for every appointment with him. Well worth it. And he's probably Zooming now for at least a portion of the necessary appointments. Please let me know if anything positive comes from our exchange of messages here, I'd love to know that it had been of use! Or write if you or your friend would like any other info. garyrob at me.com.