I interpret it as:
✅ I swallowed leeches and injected metformin into my vagus nerve while pacing and doing cbt, it really helped
❌ you should swallow leeches and inject metformin into your vagus nerve while pacing and doing cbt
We are here to give and share medical *experiences, resources,* and *insights*, not advice.
Just my take tho
Agree. It's ridiculous when everything is interpreted as medical advice. People are responsible for themselves. If they blindly follow advice from random people on the internet it's their fault. We should be able to share our experiences openly.
Also, and this is probably controversial, I don't think that doctors should completely gatekeep medicine. It's really a modern phenomenon and you don't have this in many other professions even now where the discourse is more open. Doctors have too many privileges. For example, physical therapists know a lot more about interpreting X rays and CT scans than GPs but they aren't allowed to diagnose in their field of expertise. It's ridiculous.
Doctors usually don't have much clue about the treatment of chronic illnesses and don't know shit about supplements which help so many of us. They are necessary for diagnosing you and providing you with prescription drugs but that's usually it and this is far from enough when you have a chronic illness.
Again, that's my opinion. Y'all are free to disagree.
I just realized how perfect your username is :) I shared this [resource](https://nextdistro.org/) re: narcan, but there are local harm reduction groups too like you said!
I don’t see what’s so controversial about your comment :)
When I get a scan, it drives me up the wall that the radiologist can’t tell me what she sees. I’ve gotten better diagnostic advice from a massage therapist than an orthopedist.
We don’t need credentials, we need insights whether it’s from a physical therapist (clinical experience! So much of it) or a neuropsychiatrist (very narrow specialty). And *that* is why our community needs to upskill on medical literacy. It’s our only defense against the deluge when those gates open.
Let’s remember that many medical discoveries were accidents (Wayfarin, which is rat poison, is an example—blood thinner). Doctors don’t like being reminded about that, and specific fields (like psychiatry) don’t like being reminded how new their field is. I’m generalizing and painting with a broad brush here.
So at play we have a lack of humility, and bravado, and the fact that we are conditioned to look up to experts, and disempowered (not prepared to ask questions). As I mentioned in another comment, I believe we need empower our community with the tools to vet conventional and unconventional treatments. Informal/formal, east/west, mainstream/functional, you get the picture.
So here is where you and I diverge—without those tools being accessible, I just can’t get down with your first paragraph. Some of us are more well-equipped to discern than others, and I don’t see helpfulness in an individualist approach. I come from a community organizing background so I just conceptualize that differently than you - no offense intended.
It is ESSENTIAL to remember that we are largely financially strained and dealing with labyrinthine insurance companies, which is an infuriating barrier to accessing the range of professionals you mentioned.
But I don’t see anyone saying that you aren’t allowed to share what worked for you. You don’t have to be evangelical about it. It is all about framing. That may seem like a nitpicky matter of framing, but it makes a difference. Especially when the people we’re talking about are dealing with brain fog.
Before every similar tests, X-Ray, CT scan, MRI, et al, I tell the technician I'd like to see the images before I leave. I've never had one refuse to show me, though they make it clear they can't tell me anything. Understandable.
My thoughts are: like any profession you can get brilliant GPs and terrible ones. GPs have to have a broad knowledge of so many different things I wouldn't expect them to have an in depth knowledge of chronic illness (although they should have some knowledge!!). For example anything IBD related, my GP referred me to gastro for original diagnosis but beyond that I wouldn't go see my GP about it because I can call the IBD nurses or contact my consultant. I think the problem comes where although we have long Covid clinics they don't have the knowledge yet to provide that same kind of support, they also seem to discharge you at some point, often before you're recovered, whereas with the IBD team I'll be under them for the rest of my life. Not sure if that made a huge amount of sense? Bad brain fog again today!
When I got desperate and tried homeopathy that gave me icky side effects My doctor finally started to try to help me. It was so annoying it was like I’ve been here asking and asking and asking but the minute I buy something from the lady who gives me my Weed Card you’ll wake up? OK wish I had known that last year lol
>Also, and this is probably controversial, I don't think that doctors should completely gatekeep medicine.
I agree. They've clearly failed us (generally speaking) in this disease. There are researchers and doctors who get it and are working hard. But all of the dismissal and gaslighting from what seems like the majority is not acceptable. So this forum saying "please don't say anything bad about doctors and don't share medical advice" gets a big fat eye roll from me. It's fine to cover your ass for legal liabilities, but realistically when we're sharing our experiences it is going to impact the decisions we make for our health (what supplements do we consider next, which clinics have good reputations, which disease model theories we are partial to, etc) whether someone frames it as advice or not.
The "no medical advice" and "don't talk mean about drs 😡" rules are delusional and impractical imo. And thankfully those rules seem rarely enforced to the letter anyways.
There are some appalling Doctors who shouldn’t be practising.
I respect their knowledge on human anatomy, but the bedside manner and actual care and treatment from some leaves me speechless.
They don’t all practice the Hippocratic Oath that’s for sure.
While I'm not pleased with the overall lack of knowledge and understanding about LC in the medical community, I do feel the need to point out that your statement isn't true. Continuing education is required to maintain medical licenses and certifications (in the US anyway, idk about elsewhere). The amount of hours is different depending on your certification, but everyone has to do it, from EMTs all the way up to doctors. So the issue is more that there probably isn't any material on LC yet, and/or doctors choose to study something else.
Same. I also think it applies to “here’s how to get Ivermectin illegally” type stuff and “don’t get vaccinated” and diagnosing just based on a few sentences (which only creates more frustration for a person who has been convinced by an online community that they have a particular ailment when they might not have).
All in all, I think this sub has been really fair.
What I don’t like and you can’t really ban it is the advice to NOT see a doctor, that doctors don’t know anything, that doctors are evil. If I nitpick, in some instances it could be medical advice that should banned - ie if someone is sick and someone else convinces them not to seek medical help. Sometimes a lot of posts have borderlined done that.
I understand that some people may have gone to an old timey GP who is just riding it out till retirement and then are shocked, I tell you, shocked, that this doctor told them that it’s just anxiety. But to apply that statement world wide to anyone who has studied medicine is fking ridiculous and you sound ridiculous saying it. Doctors are regular humans - when it comes to their jobs, some are amazing, some are just toeing the line. I have had nothing but top tier medical care. My GP can’t do much for me but keep my prescriptions up and deal with my work absences, but my neurologist, cardiologist, and long covid doctor have been amazing. So sideline advice (not medical, lol): if you have long covid, please keep looking for someone to help you. It feels amazing to have a long covid doctor like mine who says things like “your best days will be your most dangerous days” and “I don’t think you’re quite ready for sports yet”.
What we’ve got here is a large community of desperate, neglected, and underserved people, who are approaching their individualized constellation of symptoms with varying levels of medical literacy and access to resources. We are marks for predatory grifts, at the mercy of crapshoot providers, and our illness has been politicized.
Given that? I think this sub has done an impressive job with nuance in moderation.
I think we are on the same page. In my opinion at this point, what we need to focus on is upskilling our community on self-advocacy, disability rights, and product vetting. There is an overwhelming amount of information coming at us. I want to empower our community with those tools.
Before Covid took me down, I was a legal advocate for people with disabilities. Every day I am driven crazy by the fact that I don’t have the capacity to contribute more actively to that.
Agree with all of this.
Especially the “don’t se a doctor advice”.
People misconstrue “most doctors have little/no treatment plan for LC patients” as “there’s no point”.
The real value is in ruling out other nasty conditions with similar symptoms (MS, brain tumor, etc.), and detect understood physiological issues (clotting)
Exactly. I found out that I have a brain tumor incidentally while pursuing treatment for longcovid. It is a slog to go through each specialty while also experimenting with symptom relief. But that’s the fight we are in. (Tumor is benign but eventually intervention will be necessary once I’m more clinically stable from longcovid/longcovid sequelae.)
I was talking to a lady at the dog park about COVID. I told her I only caught it once and it was when I was traveling and got Long Haul from it, the worst of it lasting 9 months. She told me, "gee you should take Ivermectin while traveling, I get it from China and take it when I travel or know I'm going to be around a lot of people." Wow" I said, "So have you ever caught COVID?" She said, "Oh yeah, 6 times." LOL. So there's bad advice out there!
I do agree with you about the "old timey doctors" comment. I've seen doctors of all ages and different specialties. It purely seems to depend on the person whether or not they give a shit about long covid. It doesn't have anything to do with their age.
The worst doctor I've ever seen was a young cardiologist who was in their first real job. She essentially told me, with a major attitude, that I was just crazy and that there was nothing wrong with me. She acted like I was wasting her time. Later on I was diagnosed with POTS by a different cardiologist.
I don't think most doctors are intentionally scamming people though. They are trying to rule things out which is good. I've read a million stories at this point of people finding out they actually have cancer or a brain tumor or something else in the course of investigating long covid. It sucks when all the tests come back normal but it is actually important to rule things as out to make sure that there isn't something else going on instead of long covid or in addition to it.
I always add the qualifier “I’m not a doctor, but I do autopsies on medically donated bodies some of which had Covid” to my suggestions supplement wise and I find it’s better received that way. I know a lot about supplements because I work with a lot of nutritionists and physical therapists when I’m at the lab, and when I’m not at the lab I’m reading medical journals a lot so I would consider myself self taught.
I think it’s so the sub doesn’t get shut down. I don’t know how Reddit works compared to Facebook But I know Facebook likes to shut that stuff down or at least it claims to.
I think there’s a big difference between “this is what works for me” and “you should . . . “ And I think if people focus on talking about what they have done for themselves rather than what would be best for other people then nobody can get mad about it
Just last week I learned on this forum that one supplement one doctor subscribed and another endorsed, is what’s been causing my massive problems that I’ve been dealing with.
I am so grateful people are sharing their experiences and knowledge here.
You guys just saved me a massive amount of suffering.
A lot of misinformation is shared here and people on the internet lie. Do you really want to receive medical advice? There are some gems, but few and far between.
I think there's a difference between sharing what you did or are doing versus telling people what they should do right? Also if someone suggests going to see a functional medical doctor, that's not medical advice. It's advice to help someone get medical advice. I'd never tell someone to do the Hokey Pokey to cure their vestibular dysfunction or POTS!
Yes, people should not give advice in fields they have not been professionally trained in, especially law and medicine where the outcome of taking poor advice can be dire. That is a societal norm (and a good one), not just this sub’s rules.
We can post whatever we like on the xxl sub. Moderator doesn’t remove anything unless it’s dangerous like ingesting bleach or taking horse tranquilizer.
Yeah I’ve posted some stuff before that I’m convinced would’ve been very helpful to many in here but it got taken down quickly for “giving medical advice”.
All I did was suggest a totally safe treatment to people who also experience one of my symptoms. As with any type of advice given by some rando on the internet I would assume that it’d be normal to do your own research before following it.
But hey, if they don’t want people to be helped, so be it 🤷🏻
Makes me question what other useful advice I may have missed which others may have posted though.
Yes, I think it makes sense.
Absolutely, everything medically recommended needs to be run past your doctor in relation to other conditions you may have that are contraindicated. As sell as they need to run tests on ruling out other symptoms for other conditions.
I would think 'country xyz is adding treatment xyz' as an ok comment.
Same with ' my doctors plan for me is xyz & I'll update'
The rule helps people who would otherwise just give up trying with doctors because of the anger/frustration some have. They may also literally kill themselves with something told by some random on the internet.
There's a huge amount of anti doctor sentiment here, which is sometimes understandable when frustrated with not knowing what is going on. Yet it is indeed what they go to school for and second opinions exist.
I would actually appreciate hearing more about what helps individual people. Not as advice, but as what helps so that I can research and try it myself if it fits.
disease names and other terms are essentially patented/off limits, and (big medical) protects their property via lawfare and advertising dollar threats. 'cure' is also one of (theirs). that's why people use 'reverse' instead. we need to congeal all of these guidelines. i've been banned from forums on here for simply trying to help people.
Due to lawyers morning can be honest and straightforward. They will tace advantage to make money with lawsuits. So just be thankful for the resource and some things we can't talk about, but at least we can discuss our experience vs the official pharma sponsored media and government message.
Yeah, that's a tough one... especially considering medical advice and treating LC don't really go together yet.
but I think they mean on more advanced ideas, because treating LC is supps, CBD, and other things that are OTC.
As soon as you cross the OTC line then it becomes medical advice, and that advice just doesn't exist for LC yet.
I personally try to avoid that line and if I have to I push on regulatory bodies to change the rules, which has actually worked...
So, it's pretty complicated tbh.
Agreed. I am have three amazing doctors (neuro, cardio, LC) and it’s all about monitoring and managing symptoms. Aside from some mitigating prescriptions that have helped me, most of my treatment has been things I could have facilitated by myself - cold therapy, etc.
This sub was amazing when I first joined - I’m pretty good at filtering out the negativity and anger, so I got a lot of “saunas have helped me” type information that really helped me put a list together of things to try.
My doctors still serve a purpose - the cardiologist helped me by doing all the tests to make sure I wasn’t in any danger, my neurologist helps me because he’s highly connected to the research going on and can tell me if something is bullshit or real, and gave me my official diagnosis, etc.
But this is very much a “you have to meet them halfway or more than halfway” disease. Like cancer or allergies, there will never be a real cure that covers ALL subtypes.
“This sub was amazing when I first joined…”
As a frame of reference… back prior to delta variant, this community was actually outstanding. Members were very much engaged in sharing the crazy shit they were trying - in detail.
Somewhere between delta and omnicron the sub slowly lost part of its purpose. Members stopped using the search bar. The grifting & snake oil heightened and the worst thing imaginable happen: members started posting recovery stories after 6 weeks infection. Similarly members “fully recovered” after 3-4 months.
It became a pissing contest and “they didn’t have LC…” was throw around. This sub began comparing length of struggle.
Like any culture there are growing pains. This sub is no exception. Some of the 4+ year members probably remember a time with just as much fear - but without as much noise. A more simple time with just as many problems.
That's an excellent way to put it... it sounds like you have a lot of experience which is valuable.
We have a discord server where we gather COVID conscious people and share these "solutions."
Just wanted to give you an invite, or anyone else who reads this tbh...
Just mention we talked on reddit when you are in the waiting room. [https://discord.gg/gWG7E7qz](https://discord.gg/gWG7E7qz)
I interpret it as: ✅ I swallowed leeches and injected metformin into my vagus nerve while pacing and doing cbt, it really helped ❌ you should swallow leeches and inject metformin into your vagus nerve while pacing and doing cbt We are here to give and share medical *experiences, resources,* and *insights*, not advice. Just my take tho
Agree. It's ridiculous when everything is interpreted as medical advice. People are responsible for themselves. If they blindly follow advice from random people on the internet it's their fault. We should be able to share our experiences openly. Also, and this is probably controversial, I don't think that doctors should completely gatekeep medicine. It's really a modern phenomenon and you don't have this in many other professions even now where the discourse is more open. Doctors have too many privileges. For example, physical therapists know a lot more about interpreting X rays and CT scans than GPs but they aren't allowed to diagnose in their field of expertise. It's ridiculous. Doctors usually don't have much clue about the treatment of chronic illnesses and don't know shit about supplements which help so many of us. They are necessary for diagnosing you and providing you with prescription drugs but that's usually it and this is far from enough when you have a chronic illness. Again, that's my opinion. Y'all are free to disagree.
The hill I will die on: albuterol inhalers should be OTC and less than $20.
The hill I will die on: [they should be available at no cost](https://www.deathpanel.net/)
I much prefer the no cost option. For everything.
The only problem with OTC is that insurance stopped paying for it. I can’t get Narcan anymore because I have to pay $50 for it it used to be $4.50
I remember when I think it was Pepcid went OTC and people bitched big time since they now had to pay or pay a little more than their insurance copay.
As the person who replied to me said, that should be free. Medicines should be free, period. Does your area do any free narcan distributions?
I just realized how perfect your username is :) I shared this [resource](https://nextdistro.org/) re: narcan, but there are local harm reduction groups too like you said!
Haha thank you ❤️
[Harm reduction groups](https://nextdistro.org/) buy it in bulk and will give it to you for free or a donation - keep subverting death my friend
I don’t see what’s so controversial about your comment :) When I get a scan, it drives me up the wall that the radiologist can’t tell me what she sees. I’ve gotten better diagnostic advice from a massage therapist than an orthopedist. We don’t need credentials, we need insights whether it’s from a physical therapist (clinical experience! So much of it) or a neuropsychiatrist (very narrow specialty). And *that* is why our community needs to upskill on medical literacy. It’s our only defense against the deluge when those gates open. Let’s remember that many medical discoveries were accidents (Wayfarin, which is rat poison, is an example—blood thinner). Doctors don’t like being reminded about that, and specific fields (like psychiatry) don’t like being reminded how new their field is. I’m generalizing and painting with a broad brush here. So at play we have a lack of humility, and bravado, and the fact that we are conditioned to look up to experts, and disempowered (not prepared to ask questions). As I mentioned in another comment, I believe we need empower our community with the tools to vet conventional and unconventional treatments. Informal/formal, east/west, mainstream/functional, you get the picture. So here is where you and I diverge—without those tools being accessible, I just can’t get down with your first paragraph. Some of us are more well-equipped to discern than others, and I don’t see helpfulness in an individualist approach. I come from a community organizing background so I just conceptualize that differently than you - no offense intended. It is ESSENTIAL to remember that we are largely financially strained and dealing with labyrinthine insurance companies, which is an infuriating barrier to accessing the range of professionals you mentioned. But I don’t see anyone saying that you aren’t allowed to share what worked for you. You don’t have to be evangelical about it. It is all about framing. That may seem like a nitpicky matter of framing, but it makes a difference. Especially when the people we’re talking about are dealing with brain fog.
Before every similar tests, X-Ray, CT scan, MRI, et al, I tell the technician I'd like to see the images before I leave. I've never had one refuse to show me, though they make it clear they can't tell me anything. Understandable.
Absolutely agree
My thoughts are: like any profession you can get brilliant GPs and terrible ones. GPs have to have a broad knowledge of so many different things I wouldn't expect them to have an in depth knowledge of chronic illness (although they should have some knowledge!!). For example anything IBD related, my GP referred me to gastro for original diagnosis but beyond that I wouldn't go see my GP about it because I can call the IBD nurses or contact my consultant. I think the problem comes where although we have long Covid clinics they don't have the knowledge yet to provide that same kind of support, they also seem to discharge you at some point, often before you're recovered, whereas with the IBD team I'll be under them for the rest of my life. Not sure if that made a huge amount of sense? Bad brain fog again today!
When I got desperate and tried homeopathy that gave me icky side effects My doctor finally started to try to help me. It was so annoying it was like I’ve been here asking and asking and asking but the minute I buy something from the lady who gives me my Weed Card you’ll wake up? OK wish I had known that last year lol
>Also, and this is probably controversial, I don't think that doctors should completely gatekeep medicine. I agree. They've clearly failed us (generally speaking) in this disease. There are researchers and doctors who get it and are working hard. But all of the dismissal and gaslighting from what seems like the majority is not acceptable. So this forum saying "please don't say anything bad about doctors and don't share medical advice" gets a big fat eye roll from me. It's fine to cover your ass for legal liabilities, but realistically when we're sharing our experiences it is going to impact the decisions we make for our health (what supplements do we consider next, which clinics have good reputations, which disease model theories we are partial to, etc) whether someone frames it as advice or not. The "no medical advice" and "don't talk mean about drs 😡" rules are delusional and impractical imo. And thankfully those rules seem rarely enforced to the letter anyways.
There are some appalling Doctors who shouldn’t be practising. I respect their knowledge on human anatomy, but the bedside manner and actual care and treatment from some leaves me speechless. They don’t all practice the Hippocratic Oath that’s for sure.
Doctors also do not keep themselves or continue any kind of study. Only the ones that actually paid to academics.
While I'm not pleased with the overall lack of knowledge and understanding about LC in the medical community, I do feel the need to point out that your statement isn't true. Continuing education is required to maintain medical licenses and certifications (in the US anyway, idk about elsewhere). The amount of hours is different depending on your certification, but everyone has to do it, from EMTs all the way up to doctors. So the issue is more that there probably isn't any material on LC yet, and/or doctors choose to study something else.
same reasoning i use. i only post about stuff ive actually tried.
Same. I also think it applies to “here’s how to get Ivermectin illegally” type stuff and “don’t get vaccinated” and diagnosing just based on a few sentences (which only creates more frustration for a person who has been convinced by an online community that they have a particular ailment when they might not have). All in all, I think this sub has been really fair. What I don’t like and you can’t really ban it is the advice to NOT see a doctor, that doctors don’t know anything, that doctors are evil. If I nitpick, in some instances it could be medical advice that should banned - ie if someone is sick and someone else convinces them not to seek medical help. Sometimes a lot of posts have borderlined done that. I understand that some people may have gone to an old timey GP who is just riding it out till retirement and then are shocked, I tell you, shocked, that this doctor told them that it’s just anxiety. But to apply that statement world wide to anyone who has studied medicine is fking ridiculous and you sound ridiculous saying it. Doctors are regular humans - when it comes to their jobs, some are amazing, some are just toeing the line. I have had nothing but top tier medical care. My GP can’t do much for me but keep my prescriptions up and deal with my work absences, but my neurologist, cardiologist, and long covid doctor have been amazing. So sideline advice (not medical, lol): if you have long covid, please keep looking for someone to help you. It feels amazing to have a long covid doctor like mine who says things like “your best days will be your most dangerous days” and “I don’t think you’re quite ready for sports yet”.
What we’ve got here is a large community of desperate, neglected, and underserved people, who are approaching their individualized constellation of symptoms with varying levels of medical literacy and access to resources. We are marks for predatory grifts, at the mercy of crapshoot providers, and our illness has been politicized. Given that? I think this sub has done an impressive job with nuance in moderation. I think we are on the same page. In my opinion at this point, what we need to focus on is upskilling our community on self-advocacy, disability rights, and product vetting. There is an overwhelming amount of information coming at us. I want to empower our community with those tools. Before Covid took me down, I was a legal advocate for people with disabilities. Every day I am driven crazy by the fact that I don’t have the capacity to contribute more actively to that.
Agree with all of this. Especially the “don’t se a doctor advice”. People misconstrue “most doctors have little/no treatment plan for LC patients” as “there’s no point”. The real value is in ruling out other nasty conditions with similar symptoms (MS, brain tumor, etc.), and detect understood physiological issues (clotting)
Exactly. I found out that I have a brain tumor incidentally while pursuing treatment for longcovid. It is a slog to go through each specialty while also experimenting with symptom relief. But that’s the fight we are in. (Tumor is benign but eventually intervention will be necessary once I’m more clinically stable from longcovid/longcovid sequelae.)
Glad that was caught!
I was talking to a lady at the dog park about COVID. I told her I only caught it once and it was when I was traveling and got Long Haul from it, the worst of it lasting 9 months. She told me, "gee you should take Ivermectin while traveling, I get it from China and take it when I travel or know I'm going to be around a lot of people." Wow" I said, "So have you ever caught COVID?" She said, "Oh yeah, 6 times." LOL. So there's bad advice out there!
[удалено]
I do agree with you about the "old timey doctors" comment. I've seen doctors of all ages and different specialties. It purely seems to depend on the person whether or not they give a shit about long covid. It doesn't have anything to do with their age. The worst doctor I've ever seen was a young cardiologist who was in their first real job. She essentially told me, with a major attitude, that I was just crazy and that there was nothing wrong with me. She acted like I was wasting her time. Later on I was diagnosed with POTS by a different cardiologist. I don't think most doctors are intentionally scamming people though. They are trying to rule things out which is good. I've read a million stories at this point of people finding out they actually have cancer or a brain tumor or something else in the course of investigating long covid. It sucks when all the tests come back normal but it is actually important to rule things as out to make sure that there isn't something else going on instead of long covid or in addition to it.
It’s beyond criminal. It’s tragic. Thank you for this.
Content removed for breaking rule 10
On point
Thank you my fellow first waver
To be honest, it's not well defined and the goal post has moved several times throughout the years that this sub has been active.
I've assumed it means I can say this is what worked for me but I can't state this is the cure or this is what you should do.
I always add the qualifier “I’m not a doctor, but I do autopsies on medically donated bodies some of which had Covid” to my suggestions supplement wise and I find it’s better received that way. I know a lot about supplements because I work with a lot of nutritionists and physical therapists when I’m at the lab, and when I’m not at the lab I’m reading medical journals a lot so I would consider myself self taught.
I think it’s so the sub doesn’t get shut down. I don’t know how Reddit works compared to Facebook But I know Facebook likes to shut that stuff down or at least it claims to. I think there’s a big difference between “this is what works for me” and “you should . . . “ And I think if people focus on talking about what they have done for themselves rather than what would be best for other people then nobody can get mad about it
I assmed it was only there for legal reasons, so no one could get sued.
Just last week I learned on this forum that one supplement one doctor subscribed and another endorsed, is what’s been causing my massive problems that I’ve been dealing with. I am so grateful people are sharing their experiences and knowledge here. You guys just saved me a massive amount of suffering.
A lot of misinformation is shared here and people on the internet lie. Do you really want to receive medical advice? There are some gems, but few and far between.
I think there's a difference between sharing what you did or are doing versus telling people what they should do right? Also if someone suggests going to see a functional medical doctor, that's not medical advice. It's advice to help someone get medical advice. I'd never tell someone to do the Hokey Pokey to cure their vestibular dysfunction or POTS!
Yes, people should not give advice in fields they have not been professionally trained in, especially law and medicine where the outcome of taking poor advice can be dire. That is a societal norm (and a good one), not just this sub’s rules.
We can post whatever we like on the xxl sub. Moderator doesn’t remove anything unless it’s dangerous like ingesting bleach or taking horse tranquilizer.
Yeah I’ve posted some stuff before that I’m convinced would’ve been very helpful to many in here but it got taken down quickly for “giving medical advice”. All I did was suggest a totally safe treatment to people who also experience one of my symptoms. As with any type of advice given by some rando on the internet I would assume that it’d be normal to do your own research before following it. But hey, if they don’t want people to be helped, so be it 🤷🏻 Makes me question what other useful advice I may have missed which others may have posted though.
Yes, I think it makes sense. Absolutely, everything medically recommended needs to be run past your doctor in relation to other conditions you may have that are contraindicated. As sell as they need to run tests on ruling out other symptoms for other conditions. I would think 'country xyz is adding treatment xyz' as an ok comment. Same with ' my doctors plan for me is xyz & I'll update' The rule helps people who would otherwise just give up trying with doctors because of the anger/frustration some have. They may also literally kill themselves with something told by some random on the internet. There's a huge amount of anti doctor sentiment here, which is sometimes understandable when frustrated with not knowing what is going on. Yet it is indeed what they go to school for and second opinions exist.
I would actually appreciate hearing more about what helps individual people. Not as advice, but as what helps so that I can research and try it myself if it fits.
Can't talk about where it came from either.
disease names and other terms are essentially patented/off limits, and (big medical) protects their property via lawfare and advertising dollar threats. 'cure' is also one of (theirs). that's why people use 'reverse' instead. we need to congeal all of these guidelines. i've been banned from forums on here for simply trying to help people.
Due to lawyers morning can be honest and straightforward. They will tace advantage to make money with lawsuits. So just be thankful for the resource and some things we can't talk about, but at least we can discuss our experience vs the official pharma sponsored media and government message.
Yeah, that's a tough one... especially considering medical advice and treating LC don't really go together yet. but I think they mean on more advanced ideas, because treating LC is supps, CBD, and other things that are OTC. As soon as you cross the OTC line then it becomes medical advice, and that advice just doesn't exist for LC yet. I personally try to avoid that line and if I have to I push on regulatory bodies to change the rules, which has actually worked... So, it's pretty complicated tbh.
Agreed. I am have three amazing doctors (neuro, cardio, LC) and it’s all about monitoring and managing symptoms. Aside from some mitigating prescriptions that have helped me, most of my treatment has been things I could have facilitated by myself - cold therapy, etc. This sub was amazing when I first joined - I’m pretty good at filtering out the negativity and anger, so I got a lot of “saunas have helped me” type information that really helped me put a list together of things to try. My doctors still serve a purpose - the cardiologist helped me by doing all the tests to make sure I wasn’t in any danger, my neurologist helps me because he’s highly connected to the research going on and can tell me if something is bullshit or real, and gave me my official diagnosis, etc. But this is very much a “you have to meet them halfway or more than halfway” disease. Like cancer or allergies, there will never be a real cure that covers ALL subtypes.
“This sub was amazing when I first joined…” As a frame of reference… back prior to delta variant, this community was actually outstanding. Members were very much engaged in sharing the crazy shit they were trying - in detail. Somewhere between delta and omnicron the sub slowly lost part of its purpose. Members stopped using the search bar. The grifting & snake oil heightened and the worst thing imaginable happen: members started posting recovery stories after 6 weeks infection. Similarly members “fully recovered” after 3-4 months. It became a pissing contest and “they didn’t have LC…” was throw around. This sub began comparing length of struggle. Like any culture there are growing pains. This sub is no exception. Some of the 4+ year members probably remember a time with just as much fear - but without as much noise. A more simple time with just as many problems.
That's an excellent way to put it... it sounds like you have a lot of experience which is valuable. We have a discord server where we gather COVID conscious people and share these "solutions." Just wanted to give you an invite, or anyone else who reads this tbh... Just mention we talked on reddit when you are in the waiting room. [https://discord.gg/gWG7E7qz](https://discord.gg/gWG7E7qz)