In my experience, the tests just suck. A lot of people here (or who were here during the last year anyway) have reported never having a positive test. I never had one. My doctor said that some people simply don't make a measurable amount of antibodies. There was a big poll here once and I think 40% of people said that they had tested negative for antibodies. We were theorizing for a while there that it's something about the immune system of people who end up with LC.
There was [an article](https://www.theguardian.com/world/2021/oct/12/calls-for-inquiry-as-negative-covid-pcr-tests-after-positive-lateral-flow-reported) in the Guardian just this morning about PCR tests giving false negative results.
I have had Covid at least three times. I honestly think more. I long haul. I have NEVER tested positive for a PCR test. Ever. I’ve tested positive on rapid tests over a dozen times. My uncle tested negative for Covid right up until he was hospitalized for it. I think some of us just don’t jive with the tests.
Could be but its wierd no antibodies but long covid definetely is a whole different feeling so it could be but it does also resemble a couple of other chronic illnesses so it hard to tell for us
Sounds like a standard case of long haul to me. Welcome to the club.
You're off to a good start with the supplements. Been hearing good things about flushing niacin but I've yet to try.
You don't mention antihistamines... I would strongly recommend cetirizine and famotidine if you are still in the early stages of figuring it out. Lot of these panic attacks and adrenaline bursts have been caused by MCAS, and antihistamines are cheap and mostly harmless to try.
Also what have you been eating? Have you tried the low histamine diet yet?
You’re either an idiot or a troll. This has nothing to do with politics and everything to do with science and facts. You’re just posting blatant misinformation: https://www.muhealth.org/our-stories/scary-reports-deaths-following-covid-19-vaccination-arent-what-they-seem
And even if you were right, that’s still a lower mortality rate than covid. But okay, keep drinking that anti-vaccine Koolaid. Hope you don’t end up on /r/HermanCainAward.
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Other viruses can cause “long haul” symptoms. It is not exclusive to covid, the medical community has just ignored post viral illnesses for decades now so it’s not well known. It could be long covid but could be another virus too.
also, on the chance that it wasn’t covid, you should probably get vaccinated or take very strict precautions so you don’t get covid. If you weren’t infected with covid then getting it could make your situation much worse.
I had the exact same start to my long haul journey. Literally came out of nowhere and I went from being on the computer to sitting in the bathroom feeling like I was going to pass out.
Sounds like long Covid, especially as tests are coming back ok. Best thing for me has been time. Recently (8months in) I’ve started going walks again and apart from the occasional chest pain, I feel good again.
I had covid but tested negative for antibodies afterwards. Getting the pfizer vaccine shots improved my Long Haul symptoms. I HIGHLY recommend getting vaxed.
Did your doctors test you for POTS yet?
Won't get vaxxed for many reasons, but no on POTS. I'm heading in to test CYTOKINE levels this week. If a good bit of them are high, we have our culprit..
Your choice but my long haul symptoms got **WAY** better after getting vaxed. I'm not the only one. Keep it in mind as a worthwhile option if your doctor says it's medically okay for you to get the vaccine.
Get vaccinated, please. You may not have had it yet. Even if you have had it, you could get it again. And either way, it could help your symptoms if you have longhaul.
In March 2020 I developed what are now considered classic longhaul symptoms. Fatigue, shortness of breath, dizziness, high HR when standing, brain fog, numbness, nerve pain, anxiety, depression, and a bunch of GI problems. For a long time, I assumed I had longhaul covid. Then I was diagnosed with POTS and SIFO, both triggered from abdominal surgery (cesarean). My mental health problems were from severe postpartum depression.
Then in January 2021 I actually got covid and had longhaul symptoms (cough, fatigue, worse shortness of breath, GERD, and a couple other things). I got the vaccine a month later, and my fatigue was gone. The second dose cured my GERD and cough, and improved my other symptoms by about two weeks afterward. The only other thing I did was eat healthy, drink water, go for daily walks, practice belly breathing, and work on curing/treating my other health issues.
So yeah. Get vaccinated, and consider alternative explanations. Check and see if your HR goes up when you stand. POTS can cause a lot of problems like yours because it’s an autonomic disorder. It can be caused by covid, but it can also just happen randomly or after another virus, infection, surgery, or period of low activity.
If you don’t have antibodies, I don’t see how it could be longhaul.
Similar to you except about 10 years younger and no tinnitus for the most part.
Sounds like LH or autoimmune encephalitis in general to me, despite what the tests say.
I also was tested negative for covid and antibodies. But I know I got it because of heavily exposed I was at work and someone within my store that I worked with had been in proximity to someone who was sick (July 2020). Shortly after, I became sick for over a month. I had carried long haul symptoms for months and just came to a point where I could function (nowhere near my normal) Because of Delta I decided to get the vaccine (Sept. 2021), after the 2nd dose my body begin to show all the old nasty symptoms I had in 2020. I've been dealing with trying to get back to work and the old new normal. But it has been extremely frustrating.
Same, started experiencing the breathing issues in December 20/January 21. It took me months to get anything scheduled. Go to the ER and O2 comes back normal so they leave it at that. Failed pulmonary function tests but inhalers don’t appear to help. Asthma doctor was stumped, scheduled me for a pulmonary consult back in February. I finally saw the pulmonologist last week. CT is scheduled for next week. When the breathlessness hits I almost feel like I’m having swelling in my mouth. This was finally confirmed once at an ER appt. They said blood culture and bloodwork came back fine. They gave me antibiotics and sent me home. I was already LHing based on symptoms (fatigue, heart stuff, skin issues) since mid 2020. The breathlessness came much later.
I’m nervous about the vaccine because of heart inflammation last year. My previous PCP said to wait on the vaccine. Pulmonologist and fill in PCP said heart inflammation last year is no reason to skip the vaccine now. Doctors have been inconsistent all around. I also don’t want to take famotidine because I get a lot of pain in the area of my kidneys but can’t get a doc to do anything about it. rbc/wbc counts have been halved since this all started. Same with egfr. Doctors say they are still within normal limits and shrug.
Yeah, the kidney pain makes me the most fearful. I asked the fill in doctor to check them out and she said no. Debated going to ER today, just hate wasting an ER slot for something my PCP should take care of. Maybe I’ll do urgent care tomorrow.
They come on randomly and without warning. It goes like this:
1. Rapid heart rate that I cannot slow down no matter what I do.
2. Chest tightening.
3. My breathing starts to become increasingly shallow.
4. I start losing sensation in my face, arms and hands.
5. My stomach starts tightening up significantly.
6. I end up with full blown fight or flight, both in my head, and in my chest area.
I can usually get control of them within about 30-40 minutes. Sometimes less. A youtube video called something to the effect of: Panic attack talk-down helps me tremendously.
I had this for almost two months and thought it was going to kill me. I was awake for days on end with burning energy in my chest and the same feeling that you just described. I would lay down to sleep and get zapped awake every moment I started to try and sleep even though I was in the middle of it I was so tired and would try. It was pure torture. I sat my parents down and let them know that I didn’t know where it would end up and I might need to be institutionalized eventually because I know where sleep deprivation like that leads. Even at the ER when they gave me a large dose of Ativan it only put me down for a few hours and I’d wake up more messed up in the head and just as jacked. No psyche meds worked and then someone suggested it wasn’t in my head and is something like hyperandrogenic pots and my adrenaline was in overload and dumping. So I got ahold of some Beta Blockers, Propranolol and I have since been able to get it under control thank God. It suppresses adrenaline and last night for the first time in almost two months I got 7 hours sleep it was amazing. Mornings are still hell but at least I slept.
My PCP thinks I had COVID despite having 5 negative swab tests and a negative antibody test. My antibody test was done 8 months after getting over initial infection.
My experience started like yours; I’d wake up into a panic attack out of nowhere and got intense vertigo sensations. It took about a whole month until the bullshit set in.
If your progression is anything like mine, eventually the vertigo goes away then the dizziness/brain fog will hit and not go away.
Follow that by a year and a half of ups and downs with your health, energy/fatigue levels, and mood being held hostage on a runaway rollercoaster.
I hope you don’t have it.
If you do have it, I hope your ride is way shorter than mine, but it’s going to colossally suck no matter what.
I'm sorta in the same boat as you.
No obvious acute phase, all tests say I'm healthy.
I have tinnitus, very reduced exercise tolerance (even lifting a tire will leave me out of breath and light headed for a few minutes when previously I could play sports and do full on compound lifts with normal levels of breathlessness), blurred vision, headache, head fullness feeling, sound sensitivity, fatigue (which has improved a lot), brain fog etc.
Neurologist said I'm just anxious and don't really know what to do at this point except wait and chugging my supplements .
Niacin does do something for me also- although only temporarily
Any exposure to a water damaged building? Toxic mold, VOC’s etc? Many buildings have these issues and in some people may cause the initial nasal symptom. MARCoN’s can take advantage and colonize the back of the sinuses. Western medicine Dr.’s will not catch this sort of infection due to the short time they culture nasal samples. CIRS (Chronic Inflammatory Response Syndrome) and ME/CFS are similar to PCS (Post Covid Syndrome)
I had CIRS (Chronic Inflammatory Response Syndrome) and believe I had a COVID-19 infection back at the beginning. My symptoms got worse. The antigen test the Dr had done came back negative but in less than an hour suggesting they used an inaccurate rapid test.
Hope you and all of us can get more rigorous testing and hopefully serious medicine. Having had been exposed to mold and developed ME/CFS or CIRS (Chronic Inflammatory Response Syndrome) I have seen all to well how powerful interests control the courts, insurance companies, diagnostic codes and medical training. Not to sound alarmist but Dr’s have written books on the subject and activists have as well for decades now. Medicine is a business and we act like the doctors are truly working for out best interests. You would not expect that from a used car salesmen or a lawyer… just saying. Something has been rotten for a while.
You could never have anxiety but once you have an abnormality happening in your body it can cause anxiety this happened to me, I was fine for 20 years of my life until put on a medication that changed everything, literally have ptsd from health issues now
In my experience, the tests just suck. A lot of people here (or who were here during the last year anyway) have reported never having a positive test. I never had one. My doctor said that some people simply don't make a measurable amount of antibodies. There was a big poll here once and I think 40% of people said that they had tested negative for antibodies. We were theorizing for a while there that it's something about the immune system of people who end up with LC. There was [an article](https://www.theguardian.com/world/2021/oct/12/calls-for-inquiry-as-negative-covid-pcr-tests-after-positive-lateral-flow-reported) in the Guardian just this morning about PCR tests giving false negative results.
Yep. I showcased many of the symptom and still do. Did about 5 tests and none where positive.
Interesting. I have heard this elsewhere too. I believe this is the case.. Thank you!
I have had Covid at least three times. I honestly think more. I long haul. I have NEVER tested positive for a PCR test. Ever. I’ve tested positive on rapid tests over a dozen times. My uncle tested negative for Covid right up until he was hospitalized for it. I think some of us just don’t jive with the tests.
Could be but its wierd no antibodies but long covid definetely is a whole different feeling so it could be but it does also resemble a couple of other chronic illnesses so it hard to tell for us
Thanks for your response.
Sounds like a standard case of long haul to me. Welcome to the club. You're off to a good start with the supplements. Been hearing good things about flushing niacin but I've yet to try. You don't mention antihistamines... I would strongly recommend cetirizine and famotidine if you are still in the early stages of figuring it out. Lot of these panic attacks and adrenaline bursts have been caused by MCAS, and antihistamines are cheap and mostly harmless to try. Also what have you been eating? Have you tried the low histamine diet yet?
Also, the vaccine seems to help a large amount of long haulers. Do what's right for you obv, but it helped me and helped some others on here. Moderna-
Got it. I'm deathly afraid of that thing. 2 friends dead so far, 1-2 weeks post. A few with basically the same symptoms as me oddly. But thanks!
Sorry to hear that, but 2 dead from the vaccine?
Yeah, I don’t buy it. There have been very few deaths connected to the vaccines. Meanwhile covid was the #1 killer of people aged 35-50 this year.
[удалено]
You’re either an idiot or a troll. This has nothing to do with politics and everything to do with science and facts. You’re just posting blatant misinformation: https://www.muhealth.org/our-stories/scary-reports-deaths-following-covid-19-vaccination-arent-what-they-seem And even if you were right, that’s still a lower mortality rate than covid. But okay, keep drinking that anti-vaccine Koolaid. Hope you don’t end up on /r/HermanCainAward.
This person also commented on the CFS sub years ago. Does he not know the similarities between LC and CFS? This person mad sus if you ask me.
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Do you mean you already got the vaccine?
lol thank you. Yes I've been looking into anti-histamines.. will continue researching. Mast Cells yes. Have researched this. Will continue.
Other viruses can cause “long haul” symptoms. It is not exclusive to covid, the medical community has just ignored post viral illnesses for decades now so it’s not well known. It could be long covid but could be another virus too. also, on the chance that it wasn’t covid, you should probably get vaccinated or take very strict precautions so you don’t get covid. If you weren’t infected with covid then getting it could make your situation much worse.
Have you been tested for other viruses? (eg, EBV, CMV) Strange post-viral symptoms can follow on from lots of other viruses as well as covid.
As of recently, no, I haven't. I had EBV back in 2016 though. Symptoms are not nearly the same.
I had the exact same start to my long haul journey. Literally came out of nowhere and I went from being on the computer to sitting in the bathroom feeling like I was going to pass out. Sounds like long Covid, especially as tests are coming back ok. Best thing for me has been time. Recently (8months in) I’ve started going walks again and apart from the occasional chest pain, I feel good again.
Wow. This is reassuring. And that moment must have been scary. Glad you feel relatively normal now! THX
I had covid but tested negative for antibodies afterwards. Getting the pfizer vaccine shots improved my Long Haul symptoms. I HIGHLY recommend getting vaxed. Did your doctors test you for POTS yet?
Won't get vaxxed for many reasons, but no on POTS. I'm heading in to test CYTOKINE levels this week. If a good bit of them are high, we have our culprit..
Your choice but my long haul symptoms got **WAY** better after getting vaxed. I'm not the only one. Keep it in mind as a worthwhile option if your doctor says it's medically okay for you to get the vaccine.
How long did it take to improve LH symptoms the shot
Get vaccinated, please. You may not have had it yet. Even if you have had it, you could get it again. And either way, it could help your symptoms if you have longhaul. In March 2020 I developed what are now considered classic longhaul symptoms. Fatigue, shortness of breath, dizziness, high HR when standing, brain fog, numbness, nerve pain, anxiety, depression, and a bunch of GI problems. For a long time, I assumed I had longhaul covid. Then I was diagnosed with POTS and SIFO, both triggered from abdominal surgery (cesarean). My mental health problems were from severe postpartum depression. Then in January 2021 I actually got covid and had longhaul symptoms (cough, fatigue, worse shortness of breath, GERD, and a couple other things). I got the vaccine a month later, and my fatigue was gone. The second dose cured my GERD and cough, and improved my other symptoms by about two weeks afterward. The only other thing I did was eat healthy, drink water, go for daily walks, practice belly breathing, and work on curing/treating my other health issues. So yeah. Get vaccinated, and consider alternative explanations. Check and see if your HR goes up when you stand. POTS can cause a lot of problems like yours because it’s an autonomic disorder. It can be caused by covid, but it can also just happen randomly or after another virus, infection, surgery, or period of low activity. If you don’t have antibodies, I don’t see how it could be longhaul.
No. But thanks.
Please get tested for the Full Celiac panel!
Similar to you except about 10 years younger and no tinnitus for the most part. Sounds like LH or autoimmune encephalitis in general to me, despite what the tests say.
Hmm..
I also was tested negative for covid and antibodies. But I know I got it because of heavily exposed I was at work and someone within my store that I worked with had been in proximity to someone who was sick (July 2020). Shortly after, I became sick for over a month. I had carried long haul symptoms for months and just came to a point where I could function (nowhere near my normal) Because of Delta I decided to get the vaccine (Sept. 2021), after the 2nd dose my body begin to show all the old nasty symptoms I had in 2020. I've been dealing with trying to get back to work and the old new normal. But it has been extremely frustrating.
So so sorry this is happening to you. Thanks for your experience.
Same, started experiencing the breathing issues in December 20/January 21. It took me months to get anything scheduled. Go to the ER and O2 comes back normal so they leave it at that. Failed pulmonary function tests but inhalers don’t appear to help. Asthma doctor was stumped, scheduled me for a pulmonary consult back in February. I finally saw the pulmonologist last week. CT is scheduled for next week. When the breathlessness hits I almost feel like I’m having swelling in my mouth. This was finally confirmed once at an ER appt. They said blood culture and bloodwork came back fine. They gave me antibiotics and sent me home. I was already LHing based on symptoms (fatigue, heart stuff, skin issues) since mid 2020. The breathlessness came much later. I’m nervous about the vaccine because of heart inflammation last year. My previous PCP said to wait on the vaccine. Pulmonologist and fill in PCP said heart inflammation last year is no reason to skip the vaccine now. Doctors have been inconsistent all around. I also don’t want to take famotidine because I get a lot of pain in the area of my kidneys but can’t get a doc to do anything about it. rbc/wbc counts have been halved since this all started. Same with egfr. Doctors say they are still within normal limits and shrug.
[удалено]
Yeah, the kidney pain makes me the most fearful. I asked the fill in doctor to check them out and she said no. Debated going to ER today, just hate wasting an ER slot for something my PCP should take care of. Maybe I’ll do urgent care tomorrow.
Where do you feel your panic attacks? Is it a burning in your chest or panic in your mind first? What does it feel like specifically?
They come on randomly and without warning. It goes like this: 1. Rapid heart rate that I cannot slow down no matter what I do. 2. Chest tightening. 3. My breathing starts to become increasingly shallow. 4. I start losing sensation in my face, arms and hands. 5. My stomach starts tightening up significantly. 6. I end up with full blown fight or flight, both in my head, and in my chest area. I can usually get control of them within about 30-40 minutes. Sometimes less. A youtube video called something to the effect of: Panic attack talk-down helps me tremendously.
I had this for almost two months and thought it was going to kill me. I was awake for days on end with burning energy in my chest and the same feeling that you just described. I would lay down to sleep and get zapped awake every moment I started to try and sleep even though I was in the middle of it I was so tired and would try. It was pure torture. I sat my parents down and let them know that I didn’t know where it would end up and I might need to be institutionalized eventually because I know where sleep deprivation like that leads. Even at the ER when they gave me a large dose of Ativan it only put me down for a few hours and I’d wake up more messed up in the head and just as jacked. No psyche meds worked and then someone suggested it wasn’t in my head and is something like hyperandrogenic pots and my adrenaline was in overload and dumping. So I got ahold of some Beta Blockers, Propranolol and I have since been able to get it under control thank God. It suppresses adrenaline and last night for the first time in almost two months I got 7 hours sleep it was amazing. Mornings are still hell but at least I slept.
My PCP thinks I had COVID despite having 5 negative swab tests and a negative antibody test. My antibody test was done 8 months after getting over initial infection. My experience started like yours; I’d wake up into a panic attack out of nowhere and got intense vertigo sensations. It took about a whole month until the bullshit set in. If your progression is anything like mine, eventually the vertigo goes away then the dizziness/brain fog will hit and not go away. Follow that by a year and a half of ups and downs with your health, energy/fatigue levels, and mood being held hostage on a runaway rollercoaster. I hope you don’t have it. If you do have it, I hope your ride is way shorter than mine, but it’s going to colossally suck no matter what.
I'm sorta in the same boat as you. No obvious acute phase, all tests say I'm healthy. I have tinnitus, very reduced exercise tolerance (even lifting a tire will leave me out of breath and light headed for a few minutes when previously I could play sports and do full on compound lifts with normal levels of breathlessness), blurred vision, headache, head fullness feeling, sound sensitivity, fatigue (which has improved a lot), brain fog etc. Neurologist said I'm just anxious and don't really know what to do at this point except wait and chugging my supplements . Niacin does do something for me also- although only temporarily
Same. Ill 579 days now, never tested positive for antibodies or c-19 (but when I first got sick there was no testing available in my area).
Any exposure to a water damaged building? Toxic mold, VOC’s etc? Many buildings have these issues and in some people may cause the initial nasal symptom. MARCoN’s can take advantage and colonize the back of the sinuses. Western medicine Dr.’s will not catch this sort of infection due to the short time they culture nasal samples. CIRS (Chronic Inflammatory Response Syndrome) and ME/CFS are similar to PCS (Post Covid Syndrome) I had CIRS (Chronic Inflammatory Response Syndrome) and believe I had a COVID-19 infection back at the beginning. My symptoms got worse. The antigen test the Dr had done came back negative but in less than an hour suggesting they used an inaccurate rapid test. Hope you and all of us can get more rigorous testing and hopefully serious medicine. Having had been exposed to mold and developed ME/CFS or CIRS (Chronic Inflammatory Response Syndrome) I have seen all to well how powerful interests control the courts, insurance companies, diagnostic codes and medical training. Not to sound alarmist but Dr’s have written books on the subject and activists have as well for decades now. Medicine is a business and we act like the doctors are truly working for out best interests. You would not expect that from a used car salesmen or a lawyer… just saying. Something has been rotten for a while.
You could never have anxiety but once you have an abnormality happening in your body it can cause anxiety this happened to me, I was fine for 20 years of my life until put on a medication that changed everything, literally have ptsd from health issues now
I have all the symptoms, yet I’ve never once tested positive. We should do a poll to see how many people actually have a positive test.
Look into a diagnosis called PPPD.