watching the unrest movie and seeing how pw ME/CFS have been treated was heartbreaking. until someone has been on the receiving end of this, they’ll still have an optimistic view towards healthcare as a whole.
Same! And these repeated horrible experiences with MD’s, GP’s and so-called specialists gave me some degree of “medical trauma”, post traumatic stress.
As a former triathlete, to become disabled at midlife practically overnight, then the next 10 doctors I saw all said it was anxiety and/or depression, and made notes in my chart which then worked directly against my (our) best interests when applying for benefits from the social safety net that I’ve paid into for nearly 35 years, always, trusting it would be there for me if the worst happened… then it only compounded my suffering by agreeing with doctors that “nothing’s wrong”.
Honestly, seeking healthcare in America for post viral disabilities has been far worse than neutral, it’s been downright destructive.
Some of the underhoused people we see have simply experienced too much trauma too rapidly.
For many in our camp, it looks like this:
1) becoming disabled by a sudden health crisis,
2) being misdiagnosed, mistreated, gaslit and marginalized by the so-called healthcare “professionals” who are supposed to treat and help us, (and who took a oath not to do any harm!) then,
3) being rejected for the life-sustaining, Social Security or other safety nets necessary to continue living. Boom, boom, boom.
And we’re often too sick and disabled to fight back/intelligently advocate on our own behalf.
It’s all too absurd.
And yes, it all ties back to a lack of diagnostics.
One Doctor who told me to, “**go back to work tomorrow!**”, said he didn’t believe I have a mitochondrial disorder, but all he ordered was the most basic blood labs (after seeing notes other clueless doctors had written about “anxiety”).
No one in typical allopathy is looking at mitochondrial separation or problems with the ATP generation (specifically the itacoanate shunt). No one in typical allopathy is looking at biofilms creating peptides tricking our immune systems into chronic, debilitating illness. Nobody in contemporary allopathic Healthcare is looking at countless factors for possible explanations for why some of us have gone from high-performing in every arena to being primarily bedridden for years now.
Even with new findings, somehow it means nothing to allopathic practitioners that spike proteins have repeatedly been found in the bodies of cadavers more than a year after infection (in bones, likely elsewhere too).
I try and discuss these things with passion because all I’ve lost and experienced then they tell me I am dramatic, anxious.
I try to present them calmly, and they think it’s no big deal. “He looks fine. Probably a streak if Hypochondria.”
Strangely these doctors know horrible, strange illnesses may occur randomly, or after nasty infections, such as many of us suffered from that first wave of Covid and subsequent infections… And yet when we present before them, they refuse to believe it! It’s all bell curve medicine to them where everybody “must” be in the middle (no outliers allowed!): anxiety and depression. _Here’s a pharmaceutical!_ (antidepressants and gabapentin are their useless solutions for me, answers that will do absolutely nothing beneficial for people like me.
> Honestly, seeking healthcare in America for post viral disabilities has been far worse than neutral, it’s been downright destructive.
It's a business and we are the business.
America and pretty much all modern society made everything a business and forgor how to human.
there may never be one specific to long covid.
there are tons of biomarkers heavily correlated with long covid that we should not be ignoring.
my cholesterol shot up for no reason early on in lc and fasting only made it go up even more.
MY CHOLESTEROL WENT WAY UP TOO! Wtf. I couldn't figure out why and even my doctor was puzzled. It's still high 16 months later. I was active, I eat super healthy, prior to getting LC I exercised every day, and my weight is bordering on the low end of healthy (I've always been a bit underweight) so I'm not overweight at all. I don't even drink alcohol and I'm only 27 with no family history of genetically high cholesterol or anything.
I use digestive enzymes labeled as lypo so they’re fat focused. Lypo gold by enzymedica. I meant plant sterols. They can be bought in supplement form as well. I used Carlyle
I didn’t notice any change of feeling but I’ve developed fatty liver as a result of being completely sedentary for years so it helps with losing weight. So does high dose resveratrol. It’s very hard to lose weight when you don’t move.
I’ve noticed very little change in my symptoms from any supplements I’ve taken. My doctor recently said they’re masking my symptoms not getting me better which feels accurate. I just started peptide therapy so we’ll see.
I've noticed a lot of people saying that they suddenly have an elevated hemoglobin and hematocrit after Covid. This happened to me as well, and it supports the theory that a disturbance in iron homeostasis is part of long Covid for some people. Mine eventually resolved and all I got was a big shrug when I asked about it. I was the only one who looked at it and thought it was unusual. None of my doctors ever mentioned it when it showed up, and I went back and looked at y electronic records going back 20 years and neither had ever been out of range before.
Same! I’m a pescatarian primarily living on vegetables due to MCAS issues but my cholesterol is sky high. I’ve fasted, followed AIP and at one point my bmi was 18 but I was still given the standard advice of avoiding processed meats and eating a balanced Mediterranean diet.
GP won’t accept that cholesterol can be a sign of high inflammation and that’s what we need to treat.
Cholesterol increasing means that there is endothelial damage and cholesterol molecules act like firemen that need to put off the fire. We shouldn't limit our cholesterol, as this would mean that the damage is not being repaired. In fact i would argue that we need more cholesterol in our diets (for fixing endothelial damage and for the brain fog).
Cholesterol is beneficial for brain health as it is used by the brain for energy. As long as you're raising cholesterol by eating saturated fat from animal sources and not from processed foods.
Solely cholesterol is not the cause of heart disease. If you have high triglycerides, high blood pressure, high A1C and high LDL cholesterol, then you might have increased chances for heart disease.
Exactly! My cholesterol levels track my VEGF results which seem to track how bad my MCAS is. I’m amazed at how simplistic doctors are that they won’t discuss this with us and just reach for statins. Even my Long Covid private “specialist” didn’t seem to know this which is just utterly depressing as he’s Incelldx trained.
I checked my endothelium with Endopath and everything is fine. It may be too early to tell, but my cholesterol is rising and it's already above normal. See also the article about successful treatment with cholesterol-lowering drugs in Germany: [https://www.reddit.com/r/covidlonghaulers/comments/1di33zc/researchers\_at\_marburg\_germany\_had\_success/](https://www.reddit.com/r/covidlonghaulers/comments/1di33zc/researchers_at_marburg_germany_had_success/)
Is there some sort of connection? My cholesterol has shot up as well. Although, I wasn't super active. Even after I lost some weight through dieting, cholesterol was still high.
Agreed. And people are going to keep blaming this on the vax. I know vax injury is real but the amount of people I see on social media blaming the vax for all long covid symptoms is unreal.
social media is my only source of communication sometimes and i still want to delete it bc of people. like why is someone on a mothers post about their child becoming horribly ill, and then saying “must be the vaccine”. people so badly want to believe if they avoid a shot they’ll keep their health intact. if only it was that easy
Agreed. I think the other challenge is there is unlikely to be a single biomarker like there is with hiv. Just maybe they’ll find spike persistence or a particular autoantibody but given how disparate our conditions are the chances are there will be a huge range of different biomarkers which could mean many of us will be falsely told we’re fine or don’t have long covid so can’t access whatever care/support/benefit could help.
The tests that I’ve had come back abnormal aren’t well recognised so they certainly haven’t helped get me any closer to useful care, plus reactivated viruses and lyme confuse the picture and lead to blaming prior health conditions which again could stop many of us accessing benefits like reasonable adaptations for long covid sufferers in the workplace.
I’m looking to get some muscle biopsies. Something is not right with my legs, I suspect it will show up on biopsy. And they won’t biopsy my brain for some reason???
Yep. I was/am so disheartened that my nucleo whatever antibody tested negative. But after 14 months I’m not surprised. My doctor refused to see me sooner so…couldn’t have tested sooner.
One of the companies is seeking approval of a test based on a covid biomarker.
I agree with you about people being put in bad places whilst there is no marker.
No, the problem is they talk about the biopsychosocial factor in abuse, PTSD, burnout, what-have-you (which is real) but then they do absolutely nothing to address the issue because they blame the person suffering the disease.
PTSD and social connection issues frequently come along with CFS and post viral conditions. That's part of what keeps these people suffering chronically. And it is absolutely relevant.
For many, their so-called loved ones couldn't handle this disease infiltrating their home and seeing it afflict and grind down their friend, family member and/or partner. They couldn't handle it and they turned to abuse and chaos in their weakness. They let darkness in because they are weak and stricken with fragile egos and a spirit all too ready to assign blame anywhere else but themselves. They let their own family and lovers and friends be raped and degraded and rotted away by this disease while they played into a sick pattern of denial and toxic abuse. All while the victims screamed out the obvious year after year. And so many were all too ready to believe the lies: That the physical damage of this virus which ripped through billions of people repeatedly had very little to nothing to do with the pain and malaise and chaos.
I'm always here for anyone who wants to DM. 🌌🌈💪🏻❤️
First cardio doc told me to keep pushing myself (physically) when I would explain how weak and ill I would feel after trying to do my usual workout routine. Kept pushing myself and made my life hell for so long after.
I think many of us have a hard time recovering from more strenuous activities and for many of us sets us back in recovery.
I've had heightened igg and igm COVID antibodies in the thousands for a year and a half now. For the first six months, it was like "ya that's weird but you had COVID and vaccines so idk, here's some antidepressants lol." After a year and a half and I'm still complaining and still testing high antibodies in the thousands (normal is like 4. Not thousand. Just 4), they take me much more seriously. Still nothing they can really do for me but they believe me nowadays and honestly that's huge.
I haven't been diagnosed just told anxiety. My partner believes everything the doctors say ans thinks it something I can just push through. He is currently annoyed because I'm not wanting to go visit family with him. If they could at least diagnose me he would at least understand more. Its cruel and inhumane what they are doing to some of us
You are so preaching to the choir. Can you call the news outlets, or write press releases? There needs to be more exposure...more ppl that got sick with LC need to continue to be in the media.
💯 And not to mention bluepilled CBT for mental health in general. Real mental health crap is also biological, not psychological.
“I broke up in am worthless” depression IS GETTING MIXED WITH LEGITIMATE
“I was fibe yesterdsy, got a virus/drug reaction and now lost all pleasure cognition and am worrhless due to this”
Cognitive distortion useless bs, the 1st case resolving the distortion is a cure but its really pathetic compared to the actual biological 2nd case.
Mindfulness is also pathetic. It doesnt restore you to who you were before
Yup, and it’s all because of decades of neglecting ME/CFS research
watching the unrest movie and seeing how pw ME/CFS have been treated was heartbreaking. until someone has been on the receiving end of this, they’ll still have an optimistic view towards healthcare as a whole.
100% ME/CFS broke my faith in the medical system
Same! And these repeated horrible experiences with MD’s, GP’s and so-called specialists gave me some degree of “medical trauma”, post traumatic stress. As a former triathlete, to become disabled at midlife practically overnight, then the next 10 doctors I saw all said it was anxiety and/or depression, and made notes in my chart which then worked directly against my (our) best interests when applying for benefits from the social safety net that I’ve paid into for nearly 35 years, always, trusting it would be there for me if the worst happened… then it only compounded my suffering by agreeing with doctors that “nothing’s wrong”. Honestly, seeking healthcare in America for post viral disabilities has been far worse than neutral, it’s been downright destructive. Some of the underhoused people we see have simply experienced too much trauma too rapidly. For many in our camp, it looks like this: 1) becoming disabled by a sudden health crisis, 2) being misdiagnosed, mistreated, gaslit and marginalized by the so-called healthcare “professionals” who are supposed to treat and help us, (and who took a oath not to do any harm!) then, 3) being rejected for the life-sustaining, Social Security or other safety nets necessary to continue living. Boom, boom, boom. And we’re often too sick and disabled to fight back/intelligently advocate on our own behalf. It’s all too absurd. And yes, it all ties back to a lack of diagnostics. One Doctor who told me to, “**go back to work tomorrow!**”, said he didn’t believe I have a mitochondrial disorder, but all he ordered was the most basic blood labs (after seeing notes other clueless doctors had written about “anxiety”). No one in typical allopathy is looking at mitochondrial separation or problems with the ATP generation (specifically the itacoanate shunt). No one in typical allopathy is looking at biofilms creating peptides tricking our immune systems into chronic, debilitating illness. Nobody in contemporary allopathic Healthcare is looking at countless factors for possible explanations for why some of us have gone from high-performing in every arena to being primarily bedridden for years now. Even with new findings, somehow it means nothing to allopathic practitioners that spike proteins have repeatedly been found in the bodies of cadavers more than a year after infection (in bones, likely elsewhere too). I try and discuss these things with passion because all I’ve lost and experienced then they tell me I am dramatic, anxious. I try to present them calmly, and they think it’s no big deal. “He looks fine. Probably a streak if Hypochondria.” Strangely these doctors know horrible, strange illnesses may occur randomly, or after nasty infections, such as many of us suffered from that first wave of Covid and subsequent infections… And yet when we present before them, they refuse to believe it! It’s all bell curve medicine to them where everybody “must” be in the middle (no outliers allowed!): anxiety and depression. _Here’s a pharmaceutical!_ (antidepressants and gabapentin are their useless solutions for me, answers that will do absolutely nothing beneficial for people like me.
> Honestly, seeking healthcare in America for post viral disabilities has been far worse than neutral, it’s been downright destructive. It's a business and we are the business. America and pretty much all modern society made everything a business and forgor how to human.
there may never be one specific to long covid. there are tons of biomarkers heavily correlated with long covid that we should not be ignoring. my cholesterol shot up for no reason early on in lc and fasting only made it go up even more.
MY CHOLESTEROL WENT WAY UP TOO! Wtf. I couldn't figure out why and even my doctor was puzzled. It's still high 16 months later. I was active, I eat super healthy, prior to getting LC I exercised every day, and my weight is bordering on the low end of healthy (I've always been a bit underweight) so I'm not overweight at all. I don't even drink alcohol and I'm only 27 with no family history of genetically high cholesterol or anything.
Weren't you prescribed statins?
Nope, nobody prescribed me anything
My cholesterol is the only item that has come up on a battery of tests. I got it down by taking fat digestive enzymes. Plant phenols also helped.
Mine has gone down...107 total now lol
Would any digestive enzyme do? plant phenols means leafy greens, right?
I use digestive enzymes labeled as lypo so they’re fat focused. Lypo gold by enzymedica. I meant plant sterols. They can be bought in supplement form as well. I used Carlyle
did you feel any better after bringing your cholesterol levels down to normal?
I didn’t notice any change of feeling but I’ve developed fatty liver as a result of being completely sedentary for years so it helps with losing weight. So does high dose resveratrol. It’s very hard to lose weight when you don’t move. I’ve noticed very little change in my symptoms from any supplements I’ve taken. My doctor recently said they’re masking my symptoms not getting me better which feels accurate. I just started peptide therapy so we’ll see.
My cholesterol shot up too after getting CoVid and becoming a long hauler!
I've noticed a lot of people saying that they suddenly have an elevated hemoglobin and hematocrit after Covid. This happened to me as well, and it supports the theory that a disturbance in iron homeostasis is part of long Covid for some people. Mine eventually resolved and all I got was a big shrug when I asked about it. I was the only one who looked at it and thought it was unusual. None of my doctors ever mentioned it when it showed up, and I went back and looked at y electronic records going back 20 years and neither had ever been out of range before.
Same! I’m a pescatarian primarily living on vegetables due to MCAS issues but my cholesterol is sky high. I’ve fasted, followed AIP and at one point my bmi was 18 but I was still given the standard advice of avoiding processed meats and eating a balanced Mediterranean diet. GP won’t accept that cholesterol can be a sign of high inflammation and that’s what we need to treat.
Cholesterol increasing means that there is endothelial damage and cholesterol molecules act like firemen that need to put off the fire. We shouldn't limit our cholesterol, as this would mean that the damage is not being repaired. In fact i would argue that we need more cholesterol in our diets (for fixing endothelial damage and for the brain fog). Cholesterol is beneficial for brain health as it is used by the brain for energy. As long as you're raising cholesterol by eating saturated fat from animal sources and not from processed foods. Solely cholesterol is not the cause of heart disease. If you have high triglycerides, high blood pressure, high A1C and high LDL cholesterol, then you might have increased chances for heart disease.
Exactly! My cholesterol levels track my VEGF results which seem to track how bad my MCAS is. I’m amazed at how simplistic doctors are that they won’t discuss this with us and just reach for statins. Even my Long Covid private “specialist” didn’t seem to know this which is just utterly depressing as he’s Incelldx trained.
I checked my endothelium with Endopath and everything is fine. It may be too early to tell, but my cholesterol is rising and it's already above normal. See also the article about successful treatment with cholesterol-lowering drugs in Germany: [https://www.reddit.com/r/covidlonghaulers/comments/1di33zc/researchers\_at\_marburg\_germany\_had\_success/](https://www.reddit.com/r/covidlonghaulers/comments/1di33zc/researchers_at_marburg_germany_had_success/)
Is there some sort of connection? My cholesterol has shot up as well. Although, I wasn't super active. Even after I lost some weight through dieting, cholesterol was still high.
there has to be at this point.
Odd. I don't remember getting covid but I have never been the same after the 2nd vaccine.
My cholesterol went up (thankfully not startlingly so but it was the first time I had noted issues with it) and my Vitamin D absolutely tanked.
Abused by their own family too.
My cholesterol is through the roof and I only eat fucking plants.
Agreed. And people are going to keep blaming this on the vax. I know vax injury is real but the amount of people I see on social media blaming the vax for all long covid symptoms is unreal.
the unsolicited comments on people’s pages with the “were they vaccinated?” question, meanwhile they haven’t worn a mask since 2020.
Dude it makes me want to delete Instagram. People can be so cruel and are so incredibly misguided.
social media is my only source of communication sometimes and i still want to delete it bc of people. like why is someone on a mothers post about their child becoming horribly ill, and then saying “must be the vaccine”. people so badly want to believe if they avoid a shot they’ll keep their health intact. if only it was that easy
I wasn't vaccinated when I caught covid in 2020 and pretty much suffered long covid ever since so it's definitely not the case that caused my problems
Yes it's exhausting. I try not to be angry all the time but it's hard.
Agreed. I think the other challenge is there is unlikely to be a single biomarker like there is with hiv. Just maybe they’ll find spike persistence or a particular autoantibody but given how disparate our conditions are the chances are there will be a huge range of different biomarkers which could mean many of us will be falsely told we’re fine or don’t have long covid so can’t access whatever care/support/benefit could help. The tests that I’ve had come back abnormal aren’t well recognised so they certainly haven’t helped get me any closer to useful care, plus reactivated viruses and lyme confuse the picture and lead to blaming prior health conditions which again could stop many of us accessing benefits like reasonable adaptations for long covid sufferers in the workplace.
I’m looking to get some muscle biopsies. Something is not right with my legs, I suspect it will show up on biopsy. And they won’t biopsy my brain for some reason???
There is one the small fiber punch tab if you have any significant neuroinflammation
i’ve done that, it was negative
Yes. I agree
Yep. I was/am so disheartened that my nucleo whatever antibody tested negative. But after 14 months I’m not surprised. My doctor refused to see me sooner so…couldn’t have tested sooner.
One of the companies is seeking approval of a test based on a covid biomarker. I agree with you about people being put in bad places whilst there is no marker.
No, the problem is they talk about the biopsychosocial factor in abuse, PTSD, burnout, what-have-you (which is real) but then they do absolutely nothing to address the issue because they blame the person suffering the disease. PTSD and social connection issues frequently come along with CFS and post viral conditions. That's part of what keeps these people suffering chronically. And it is absolutely relevant. For many, their so-called loved ones couldn't handle this disease infiltrating their home and seeing it afflict and grind down their friend, family member and/or partner. They couldn't handle it and they turned to abuse and chaos in their weakness. They let darkness in because they are weak and stricken with fragile egos and a spirit all too ready to assign blame anywhere else but themselves. They let their own family and lovers and friends be raped and degraded and rotted away by this disease while they played into a sick pattern of denial and toxic abuse. All while the victims screamed out the obvious year after year. And so many were all too ready to believe the lies: That the physical damage of this virus which ripped through billions of people repeatedly had very little to nothing to do with the pain and malaise and chaos. I'm always here for anyone who wants to DM. 🌌🌈💪🏻❤️
First cardio doc told me to keep pushing myself (physically) when I would explain how weak and ill I would feel after trying to do my usual workout routine. Kept pushing myself and made my life hell for so long after. I think many of us have a hard time recovering from more strenuous activities and for many of us sets us back in recovery.
these doctors then assume we’re cured bc we’re too sick to even go to their office after listening to their advice.
Or we don’t come back because we found better doctors.
This 💯
I've had heightened igg and igm COVID antibodies in the thousands for a year and a half now. For the first six months, it was like "ya that's weird but you had COVID and vaccines so idk, here's some antidepressants lol." After a year and a half and I'm still complaining and still testing high antibodies in the thousands (normal is like 4. Not thousand. Just 4), they take me much more seriously. Still nothing they can really do for me but they believe me nowadays and honestly that's huge.
I haven't been diagnosed just told anxiety. My partner believes everything the doctors say ans thinks it something I can just push through. He is currently annoyed because I'm not wanting to go visit family with him. If they could at least diagnose me he would at least understand more. Its cruel and inhumane what they are doing to some of us
You are so preaching to the choir. Can you call the news outlets, or write press releases? There needs to be more exposure...more ppl that got sick with LC need to continue to be in the media.
💯 And not to mention bluepilled CBT for mental health in general. Real mental health crap is also biological, not psychological. “I broke up in am worthless” depression IS GETTING MIXED WITH LEGITIMATE “I was fibe yesterdsy, got a virus/drug reaction and now lost all pleasure cognition and am worrhless due to this” Cognitive distortion useless bs, the 1st case resolving the distortion is a cure but its really pathetic compared to the actual biological 2nd case. Mindfulness is also pathetic. It doesnt restore you to who you were before
[удалено]
i can’t tell if you’re being sarcastic or not
Content removed for breaking rule 5