Covid-19 Long Hauler and Parosmia Support Thread

[tessa grace]

Hello everyone! So I'm really not sure how many people have gotten Covid-19 on this forum in general, but I thought I could make the Covid-19 Long Hauler Support Thread for people who happen to be like me and have long-lasting symptoms. So, this thread is for anybody who has had long term physical effects because of the virus, or for people who just happen to pass by and want to show support.

Basically an overview of what Covid-19 long haul is: Most people get a bit of a brain fog and just normal 2 week symptoms when they experience Covid-19 and catch the virus. However, some people have had lasting effects ever since catching the virus. Some of this includes heavy brain fog, which could be any range of a cognitive impairment, shortness of breath, chest pain, newly diagnosed or worse diabetes, lost or change of taste and smell, an irregular menstrual cycle, and even PTSD, depression, and anxiety. The list is truly endless. I made this thread for people to share their stories, so I could connect. This is mine:

Back in October my mom got diagnosed with Covid-19 so we all had to quarantine, and after a week we all had it. During this period of time I had pretty normal symptoms; a sore throat, loss of taste and smell, headaches, and overall tiredness. Soon I recovered, and had a very happy halloween, Coronavirus free. A couple months later I had a difficult menstrual cycle, and so I because of that I went on birth control to regulate the bleeding and such. At first I didn't connect any of this to Covid-19, and there should be no reason for me to, however what happened soon after explained otherwise. Very soon after I started taking birth control, my tastes began to change. My taste had mostly come back before when I recovered from the virus, and I had only heard of other people not regaining their taste. However, my taste began to change rapidly, making many foods disgusting and unlike anything I had tried before. Recently it has gotten so bad that I even get nauseous after eating some foods. A short list of some of the things that taste different, but mostly bad, is:

All meats, to the point where I will get really sick and want to throw up after eating it by itself in normal amounts. This excludes fish
Onions and garlic
Many fruits and vegetables, the most notable being apples, oranges, tomatoes, carrots, and cucumber
Spices
Anything artificially flavored a certain way, so think watermelon candy and things like that
Tons of nuts like peanuts and cashews
Beans
Eggs
so so much more-

This is just a couple of many, many things that have changed, and istg it just gets progressively worse each day. After a long time convincing my parents that this does happen, and realizing that I wasn't just fooling myself, we decided to go to a doctor. Of course, there was nothing he (he being my doctor) could say about it. Instead my doctor reccomended me to a neurologist, so about a month later we decided to make sure that nothing neurological was going on. I passed all the responsive tests and such, and so just in case the neurologist scheduled an MRI, which I received last week. I was terrified. I had my first IV drip in my arm, and it wasn't too bad, but still, it was kinda traumatizing. Since it was a holiday we haven't gotten results, but so far and most likely it's just COVID, which according to them is "unexplainable".

Mentally this has been draining. My anxious habits, stress, and overall negative behavior has spiked a ton, and it's been like this for around 6 months now. If I had anyway to explain what I'm going through, I would have to say that I'm just tired. I keep on waiting for the day when I wake up and everything is normal, and I can taste again, and things are okay, but it's not happening. I wouldn't go as far to say that I have an eating disorder, but I cry almost everyday because I am not eating. I'm losing weight and getting nauseous constantly. I'm so awfully tired and sick of what I've been through. It's been such an indescribable experience. I didn't realize how much I took food for granted. Along with that, my periods are still irregular, and I'm just feeling miserable. And half the time I convince myself I'm lying. I think I'm making it up and then I question my sanity. I just have been through so much recently. This is probably one of the hardest things I've ever been through.

Personally, I understand that most people may not fully get what I'm going through, which is okay, ofc. However, people might be thinking, "well Tessa just lost her taste and it's funky now, no biggie, why is she freaking out about this," However, it's been a huge problem. I didn't realize until recently how terrible it's been for me. I've lost a lot of weight and I'm rarely eating. And until my and my family looked online and through facebook groups, I didn't know that it's not just me. Other people are going through this, so I made this thread to empathize, and show my support. So, if anyone is out there and can understand how taxing something like this is, please, say something. I want to empathize, and I want to make sure it's not all in my head. Even if you're going through something different then me, whether it be better or worse, I would love to be here to listen and to understand.

 

[Midoriya]

First of all, I want to thank you for sharing your story. I haven’t caught COVID myself and am fully vaccinated now. My family thought we had it in January of last year, but I don’t think that was it.

I can’t imagine what it’s like to not be able to eat different kinds of food and taste them properly as I love to eat food. That honestly sounds absolutely terrible. Along with everything else you’re experiencing which must be a real drag as well. I really hope that things get better for you over time. People always mention when they’re wary of the vaccine that we don’t know the long term side effects of getting the vaccine. Yeah, but we don’t know the long term side effects of COVID either.

I hope that anyone else who is experiencing things like this can come forward and share here with no room for judgment. Thank you for creating this thread.

 

[jadetine]

I am so thankful you made this thread to support and educate and overall demystify the experience. I also sympathize for you and wish I was working the clinics where you are so that I could comfort you, especially with things like MRIs and IVs and jargon. I haven't been patient-facing in a long time, but I think reducing anxiety is so important in these areas and during a pandemic.

I will come back here to discuss from the perspective of a parent with a small child that tested positive, and things I wish I had known in advance...

 

[justina]

I’m so so sorry, that sounds awful and as a previous poster said I can’t imagine how difficult that must be. I have a friend who also caught it earlier in the year and lost her sense of taste for months. You are not alone. I hope the doctors will be able to do more research so you can get some answers. I also hope you can get some relief snd feel better soon. Nobody deserves to experience what you are going through.

 

[MiniPocketWorld]

This is something I have been keeping an eye on in the news/medical studies because long term symptoms often (not always) sounds eerily familiar to Fibromyalgia which can also be caused from a serious infection (viral or bacterial).

 

[tessa grace]

Just thought I'd bump this and say my MRI results came back, no neurological issues with my taste.

 

[TheSillyPuppy]

Thank you for telling your story! My thoughts are with you; as someone who loves food, I can't imagine what it's like to be in your shoes. I hope that over time, more research will be done on long-term side effects so new treatments can be provided to folks like you. I hope you'll be able to get some answers on your most recent MRI results sooner rather than later, too.

I do recall hearing of reports from Asian of longer-term effects similar to yours from folks there who had gotten COVID. I heard about these reports through my parents, who follow Asian news sources regularly, and hearing about these reports definitely alerted me about how serious it could get as the situation was still developing (though I didn't need much of a reminder because I still had a recollection of SARS).

 

[tiffanistarr]

Let me just say, you are so brave and strong for being able to come out and talk about it all. A lot of people feel shameful that they contracted COVID. Sometimes it just happens or you have a family member get it and then it goes around the house just like any other virus or infection. You are definitely not alone. I did not have COVID (that i know of) but i do know some people who did. They are most definitely feeling the long term effects of it as well.

I know someone who was a certified diver who now can no longer dive because his lungs just can’t handle it anymore. He can do basic tasks and light cardio and will live a long relatively healthy life but his one passion in life was just snatched away from him.

I know a girl who is suffering from chronic fatigue now and she was a very active and healthy person before she got it. She also has issues with smell and taste senses.

Lastly my boss’ close friend had COVID and is now suffering from hair loss. I’ve seen a couple things about long haulers dealing with hair loss and it’s just heartbreaking.

Your feelings are perfectly valid. I can’t imagine going through COVID and dealing with what you’re dealing with now. My heart seriously goes out to you and though I can’t totally relate, i’m always here to lend an ear and be a sound board! You’re very strong and i hope you hang in there!

 

[DJStarstryker]

I hope those longterm symptoms eventually go away for you.

Stuff like this is why, even though I'm vaccinated, I continue to wear masks in public. It doesn't help either when I live in one the US states that has low vaccination rates. Of course, I understand when people who can't get vaccinated for legitimate reasons. But the people who say stuff like they're afraid of side effects from the vaccine... After the 2nd dose I was very sick (high fever, aching all over, could not sleep at all, fever chills and sweats), but it was worth putting up with that. COVID is no joke. 24 hours' worth of suffering is worth it versus weeks, months, or more of longterm effects from COVID.

A guy I know got COVID and he said he was sick with it for about a month. This happened last year. He still doesn't have a sense of smell.

I know someone who was a certified diver who now can no longer dive because his lungs just can’t handle it anymore. He can do basic tasks and light cardio and will live a long relatively healthy life but his one passion in life was just snatched away from him.

My father in law passed away in 2019 from lung cancer (he was a lifelong smoker) and just seeing the way he suffered and hearing how bad his lungs were was awful. But, unfortunately, he did ultimately do that to himself by choosing to smoke. I've heard stories of people ending up with lungs as bad as a lifelong smoker's after having COVID, even if they are young and have never smoked in their life. That's terrifying.

 

[Stikki]

Just gonna echo what everyone else is saying, so well done to you for sharing all this with us. I think it can really help to educate and inform to hear personal accounts, rather than just doctors and politicians. Hearing from a sufferer instead makes it all hit home more, so sharing this is invaluable.

I truly hope that the symptoms that are still troubling you fade away completely soon. It can't be helping your anxiety issues to be dealing with this, I really feel for you.

I haven't suffered covid. I have had the first jab, so I'm hopeful that I avoided it. Sadly I lost a friend earlier this year to covid. She had other health issues too, which is probably why it killed her, but nothing very severe so it was still a shock. One of my cousins had it twice, which we weren't even aware was possible when it happened. She's still not quite right and has apparently got scarring on her lungs, but the doctors seem to think they will heal in time, so she's not of great concern to them. I can't imagine how it must be for you, but I wish you all the best x

 

[Princess Mipha]

My brother and his wife had it, because she's a nurse and brought it home sadly. My brother got it the worse and couldn't taste anything for some weeks, but luckily it's back to normal now!

I can only wish the best to everyone who is going through it. I hope you're able to stay strong and fight it!! <3

 

[MiniPocketWorld]

I ran into this in a group I am apart of and thought you may be interested.

Bruce Patterson MD is a former Stanford researcher with quite a record. The former Medical Director of Diagnostic Virology at Stanford University Hospitals and Clinics, Patterson has co-authored around 90 papers – most prior to 2011 – at about the time he left the University and created the incellDx diagnostic laboratory. Over the past ten years, incellDx has focused mostly on cancer screening and has produced products to test for HPV, CMV, antibodies, and others. Over the past two years, though, Patterson has jumped back into the publication field, co-authoring 7 papers on COVID-19 with more to come.

In June of 2020, Patterson reported that he’d identified the cause of the so-called “cytokine storm” in COVID-19.

“When we were developing a cytokine quantification assay for possible COVID trials in China, we discovered that infected patients had consistently high levels of CCL5/RANTES in plasma which in some cases was 100 times normal depending on the severity of the disease.”

Patterson and incellDx filed a patent in June 2020 for its CCL5/RANTES diagnostic test for COVID-19, Patterson reported. In October, incellDx reported that it was collaborating on a COVID-19 clinical trial using Pfizer’s CCR5 antagonist Maraviroc – a key part of Patterson’s long-COVID protocol.

Has Bruce Patterson Cracked Long COVID?

The article goes into some detail with links to very detailed papers that can be read.

The study found that CCL5/RANTES, IL-2, IL-4, CCL3, IL-6, IL-10, IFN-γ, and VEGF were all significantly elevated (all P<0.001) while GM-CSF and CCL4 were significantly reduced in COVID patients in general.

Next, they used machine learning to develop immunotypes pertaining to each type of COVID patient and found long-haul COVID patients were characterized by increased IFN-γ and IL-2, and reduced CCL4 production.

Has Bruce Patterson Cracked Long COVID?

 

[tessa grace]

I might be joining a study regarding covid-19 long haul effects. Also getting another MRI in January C:

 

[tessa grace]

I'm eleven months into this whole taste thing, and luckily doctors and other people have come forward to talk about it! There is a name for this whole thing that they've correlated from older studies to Covid-19, its called Parosmia. Anyone who think they might have this should definitely check it out. There's also been a connection with people younger than 30 and female that suffer from it especially after recovering. There still isn't really a treatment, though (except for some sketchy home remedies i'm slightly suspicious of)

Happy Holidays and stay safe everyone!

 

[Sidney]

I hadn’t seen this thread earlier but I have a very different story with COVID-19 if it’s alright to share-

Prior to it, I had been diagnosed with POTS (postural orthostatic tachycardia syndrome). This is only vaguely relevant.

Back in February 2020, only a few weeks before the first confirmed cases and before I had personally heard about, my entire dorm living facility became ill with some mystery respiratory infection. I remember it so distinctly. Our sick policy didn’t allow us to take many days off without failing, so I soldiered on to class with a fever and delirium from cough syrup for weeks (I know, I know; at the time passing my classes was more important to me and we hadn’t even heard of COVID.)

Sickest I’d ever been, honestly. I went to the emergency room 3 times and did not “recover” for quite some time. I hit all of the symptoms. My friends even joked that I maybe had COVID (~2 weeks before it was found in my state...and shortly before we had tests)

Well, after I recovered I developed lung problems my pulmo is labeling “asthma” for now. I’d never had any issues with it in the past but now I have to keep my inhaler around constantly and am on daily breathing treatments still.

Because of my POTS, i originally thought that this was just the mark of a decline in my symptoms with that, but I’ve struggled with an spike in my walking/exercising heart rate and struggle to get around a lot. I’ve also started having chest pains and what feels to me like flutters, though I’m not sure.

I just got off a 2-week heart monitor after the cardiologist I saw suggested I may actually be experiecing long-haul COVID and not a decline in my pre-existing chronic illness

I’ll find out in about 2 weeks if they found anything wrong with my heart on the monitor or the ultrasound they did on my heart and arteries

 

[tessa grace]

I hadn’t seen this thread earlier but I have a very different story with COVID-19 if it’s alright to share-

Prior to it, I had been diagnosed with POTS (postural orthostatic tachycardia syndrome). This is only vaguely relevant.

Back in February 2020, only a few weeks before the first confirmed cases and before I had personally heard about, my entire dorm living facility became ill with some mystery respiratory infection. I remember it so distinctly. Our sick policy didn’t allow us to take many days off without failing, so I soldiered on to class with a fever and delirium from cough syrup for weeks (I know, I know; at the time passing my classes was more important to me and we hadn’t even heard of COVID.)

Sickest I’d ever been, honestly. I went to the emergency room 3 times and did not “recover” for quite some time. I hit all of the symptoms. My friends even joked that I maybe had COVID (~2 weeks before it was found in my state...and shortly before we had tests)

Well, after I recovered I developed lung problems my pulmo is labeling “asthma” for now. I’d never had any issues with it in the past but now I have to keep my inhaler around constantly and am on daily breathing treatments still.

Because of my POTS, i originally thought that this was just the mark of a decline in my symptoms with that, but I’ve struggled with an spike in my walking/exercising heart rate and struggle to get around a lot. I’ve also started having chest pains and what feels to me like flutters, though I’m not sure.

I just got off a 2-week heart monitor after the cardiologist I saw suggested I may actually be experiecing long-haul COVID and not a decline in my pre-existing chronic illness

I’ll find out in about 2 weeks if they found anything wrong with my heart on the monitor or the ultrasound they did on my heart and arteries

Thank you for sharing your experience ! I can't imagine how difficult and painful having respiratory and lung symptoms may be. I'll cross my fingers for your ultrasound results.

 

[Sidney]

Thank you for sharing your experience ! I can't imagine how difficult and painful having respiratory and lung symptoms may be. I'll cross my fingers for your ultrasound results.

I’m personally hoping for something concrete and conclusive, but non-life threatening and easy to fix that’ll set me back on track to more “normal”

 

[shendere]

Wishing the best outcome for you @Sidney and @Tessa i hope things become normal again for the lot of us. Covid changed a lot of our lives, especially those of us who became infected. Keep doing your best to hang in there and stay safe as safe can be.