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So many fb Lyme groups. Which one is the best?

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Posted 2/16/2022 9:42 PM (GMT 0)
Can anyone recommend?
Posted 2/16/2022 11:21 PM (GMT 0)
to be honest the main, large one with about 34k members is full of misinformation and somewhat of a nightmare, id recommend finding the FB group for Lyme that is local to your area, hopefully there is one
Posted 2/17/2022 5:45 PM (GMT 0)
I wouldn't take medical advice from any facebook group. I think those groups are better used as emotional support communities. That said, the most rational FB group I've experienced in this realm is the Disulfiram group. However, it's mainly geared towards Disulfiram. I would recommend skepticism about taking any medical advice from anybody or anywhere (including this forum and myself) online. That's not to say you can't learn some interesting things, but don't take things said as cold hard facts.
Posted 2/18/2022 12:10 AM (GMT 0)
"Lyme, bartonella and babesia long hauler group".

Tightly focused treatment discussions,
Posted 2/18/2022 10:42 AM (GMT 0)
the standard of support forums i have visited on facebook is generally quite poor

overall - the discussions seem to be very limited - or do not stay on track -

this is mainly as a product of the format ( the platform is designed to keep people online, endlessly scrolling - but with attention fragmented - and is designed around many v short test soundbites - so it is no great surprise )

there are some exceptions though
i find the Breaking Down Bartonella group one of the better ones - many people there have Lyme and bart - and the moderators are well informed and do a good job
Posted 2/19/2022 1:39 AM (GMT 0)
Some of the best advice I found from the Lyme Facebook groups. Of course there is a lot of misinformation like someone mentioned but there's a lot of people who know what there talking about in some of those groups. Forums like these go more in depth but the problem is you only get a handful of replies compared to the hundreds you could get on Facebook. It's a trade off really.
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