And when I tried to ask for information on some treatment it even earned me a downvote. Probably by someone sorting by scaled and not wanting that in their feed or so.
This is a really good idea. Someone in my family has a rare autoimmune disease (relapsing polychondritis), for which the only treatment is a drug (Methotrexate) which has lymphoma as a side effect. It’s a fairly rare disease, with only a small percent of sufferers. I should start a community for it.
Since methotrexate is the only tool allopathic doctors have, and since homeopathy is a snake oil industry, there’s a lot of “word of mouth” suggestions from people who’ve had success from a variety of approaches, some of which work for some people, others not. Low dose Naltrexone (off label), Plaquenil, and avoiding food allergies are things doctors aren’t going to recommend because there are few scientific studies in them - because, again, nobody fucking studies the rare diseases.
Communities are really valuable for sufferers of more rare diseases. I think many people casually downvote such off-label approaches because they think it’s some sort of anti-science, anti-allopathic medicine wackadoo, when in fact the diseases are so uncommon they’re practically unresearched and certainly no pharmaceutical companies are researching cures.
Yes! Lots of folks with chronic illness find themselves in a limbo where they can’t get decent treatment or often precise diagnosis. Crowdsourcing relief has mixed results, but in such circumstances reports of rigorous trial and error with various approaches is sometimes helpful in the absence of the sort of care a lot of Americans now can’t even hope for. I know this because I’ve been there. CIDP here since 2010.
Crowdsourcing has been a blessing in my journey to relieve chronic migraine. There’s a lot of misunderstanding and bad info out there, but at least it has given me options. Doctors have all fixated on blood pressure medication and abortives, which don’t work on me in the former, and the latter leaves me incapacitated when they do work.
Going down the rabbit hole of online discussions helped me figure out I have histamine intolerance, which I was able to verify scientifically once I knew how to investigate it.
Crowdsourcing medical assistance is entirely valid, as long as you’re also seeking professional help. Medicine just doesn’t have all the answers, and sometimes “this works for me” is the best advice you can get when there’s nowhere else to turn.
I’m reminded of that old joke:
What do you someone who graduated bottom of their class at medical school?
!chronicillness@lemmy.world or more specifically (for me at least) !myalgicencephalomyelitis@lemmy.blahaj.zone.
And when I tried to ask for information on some treatment it even earned me a downvote. Probably by someone sorting by scaled and not wanting that in their feed or so.
This is a really good idea. Someone in my family has a rare autoimmune disease (relapsing polychondritis), for which the only treatment is a drug (Methotrexate) which has lymphoma as a side effect. It’s a fairly rare disease, with only a small percent of sufferers. I should start a community for it.
Since methotrexate is the only tool allopathic doctors have, and since homeopathy is a snake oil industry, there’s a lot of “word of mouth” suggestions from people who’ve had success from a variety of approaches, some of which work for some people, others not. Low dose Naltrexone (off label), Plaquenil, and avoiding food allergies are things doctors aren’t going to recommend because there are few scientific studies in them - because, again, nobody fucking studies the rare diseases.
Communities are really valuable for sufferers of more rare diseases. I think many people casually downvote such off-label approaches because they think it’s some sort of anti-science, anti-allopathic medicine wackadoo, when in fact the diseases are so uncommon they’re practically unresearched and certainly no pharmaceutical companies are researching cures.
Yes! Lots of folks with chronic illness find themselves in a limbo where they can’t get decent treatment or often precise diagnosis. Crowdsourcing relief has mixed results, but in such circumstances reports of rigorous trial and error with various approaches is sometimes helpful in the absence of the sort of care a lot of Americans now can’t even hope for. I know this because I’ve been there. CIDP here since 2010.
Crowdsourcing has been a blessing in my journey to relieve chronic migraine. There’s a lot of misunderstanding and bad info out there, but at least it has given me options. Doctors have all fixated on blood pressure medication and abortives, which don’t work on me in the former, and the latter leaves me incapacitated when they do work.
Going down the rabbit hole of online discussions helped me figure out I have histamine intolerance, which I was able to verify scientifically once I knew how to investigate it.
What is CIDP?
Crowdsourcing medical assistance is entirely valid, as long as you’re also seeking professional help. Medicine just doesn’t have all the answers, and sometimes “this works for me” is the best advice you can get when there’s nowhere else to turn.
I’m reminded of that old joke:
What do you someone who graduated bottom of their class at medical school?
“Doctor.”
Chronic Inflammatory Demyelinating Polyneuropathy.
Agreed.
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