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I’ve been living with long covid since late Spring of 2022
I lost my sense of taste and smell (I used to be a hyper taster/ smeller) in early 2020 around February. I was sick but covid was not on my radar at that time and the senses never came back but loss of senses was not then listed as a symptom once the “shut down” started in Arizona so I didn’t think about it (this was before tests).
I was thereafter fully vaccinated once vaccines became available (Pfizer). I then later became very ill with Covid (post vaccines) in September 2021 and again in January 2022. Both of those times I was sick about 2-3 weeks but at home and not hospitalized. My partner and kids went through it in about 2-4 days but I was laid out for 2-3 weeks. I thought I was recovered but then in about April 2022 began developing weird things like rashes, cuts that never healed, infections, flaking and peeling skin, memory loss, loss of concentration, extreme insomnia, vertigo, extreme fatigue. I had chelazions on eyes, blephoritus of left elbow, fevers, coughing. I tested positive for mononucleosis in summer of 2022. My anxiety and depression that were already there became off the charts. I developed hemochromatosis (and I am vegetarian). I was in early 40s and am an active woman and a lawyer and was told I was just exhausted or perimenopausal or anxious or fatigued. I went to every specialist known to man in 2022 and they all told me different things. There was one doctor at Dignity Health St Joes in Phoenix who was doing a long Covid study and he was the only doctor who believed me. I had to quit my job and was in bed for three months from September through December 2022. I spent 2023 nearly having a psychological breakdown and not being able to sleep. My memory disappeared. I went from being fully functional and a high performer to being bedridden. I went through a breakup because my partner thought I’d gone crazy and no one knew how to treat me. I was hospitalized with pneumonia and heart issues for a month in August-September 2023 in Phoenix. I developed glaucoma at 43 and hearing loss and eye duct / dry eye issues. I had glaucoma surgery. Started wearing glasses when I never had before. I was weak and unable to care for myself well. I muscled through it barely. I lost my insurance in September 2023 and had to go on state insurance and haven’t had regular care and doctors seem to brush this off as some psychological issue or a cluster of things. I was treated for valley fever and all types of diseases by infectious disease expert. It didn’t work. I accepted that I would likely die and no one would know why or what was wrong. Couldn’t work. My focus was solely on taking care of my kids as a single mom. In the months since March 2024 I’ve been feeling better, working out again, eating, getting kids (twins) where they need to be, memory improvement, sleep better.
These last two weeks have been hard. Today I’m inexplicably sick again with horrible stomach and back and shoulder pain and pins and needles. This week I was diagnosed with another eye infection. I’ve been on every antibiotic known to man since 2022. They’re prescribing more doxycycline for 3 months.
Scared.
Need a doctor who knows what to do with me … afraid this is coming back … this is just part of my story, I just discovered this forum… kind of a flare/plea for help.
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Hi longtimenotheard !
I am hearing you now. Are you still reading here?
I just posted tonight
jeez, what a night mare! I'm so glad that you have improved some. Sounds like you have been through hell and back.
It is awful when the medical people don't believe you. I got diagnosed with an autoimmune disorder when I was 52. The symptoms started when I was 15, got really bad in my 20s. Had a negative effect on ALL of my personal relationships, on top of the physical pain.
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2 ReactionsI think there is a Mayo Clinic out in AZ. Have you been there?
God Bless You! Sounds like COVID has exacerbated pre-existing conditions in your body. Is there a Long COVID clinic near you? I will be honest, it's hard to treat and takes time to get better. I am just seeing some improvements in the past month. I am on so many supplements for Long COVID.
All of my pre-existing conditions worsened with COVID. All of this got worse after COVID. Get your D3 and B12 checked. COVID lowered both of these with me.
COVID puts your body on high alert and your immune system goes into overdrive. Some people recovery quickly....others don't. It can re-ignite the Epstein Barr virus in some which is mono. Fatigue & brain fog are still there, but, I will say, it has gotten better too. I have to pace myself...no this is not old age, it's from having COVID.
Stay hydrated, eat healthy, protein, fruits & vegetables, move as much as possible. Rest as much as possible.
I went to an Integrative Medicine doctor that treats COVID. I could not tolerate the infusions or the Glutathione, but, still take the supplements he recommended. Do you have an Integrative Medicine doctor near you?
I am praying for you and I am so sorry you are battling this. Keep me posted. I care.
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3 ReactionsWhat a nightmare! I hear you and I believe you. Do find whatever best care you can. My 23 yr old daughter battled post-viral-infection-syndrome. She was diagnosed at Virginia Mason Hospital in Seattle, which is considered to be very similar to a Mayo Clinic, but here in the NW, and a day's drive from where we were in central Oregon. The doctor she saw there said that only because they were seeing so many cases similar to hers, could he make the diagnosis.
She is fine now, allergic to many foods [cow dairy (goat and sheep okay), chicken eggs (duck eggs okay), all gluten containing grains including wheat, barley, oats (rice, quinoa okay), bell peppers], and the list goes on.
Others have mentioned some blood work: make certain you get a thyroid PANEL done, not just TSH. This has probably been done in all your medical quests, but make certain all the thyroid hormones are checked.
I'm wishing you the very best as you continue this difficult journey. I'm so sorry that your relationship dissolved over something that was not in your control. Sending caring thoughts your way.
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1 ReactionI’m right there with all of you. Struggling now for two and a half years. I’ve been to hundreds of appointments with doctors and specialists. My current doctor is an Integrative doctor, but has not come up with any therapy that has helped. I suppose I’ll stick with him because at least he believes me, and is trying to find some therapy that helps.
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2 ReactionsAs I read your story, it was Deja Vu for me. I am also in Arizona and contracted COVID in April of 2020. My PA scoffed at my suggestion that it was COVID and said she would prescribe something for diarrhea, even though I told her that I had just returned on a packed flight from Chicago, after attending an 8-day training session with 85 other attendees in an international hotel with guests from all over the world. My symptoms didn't go away. My fatigue was so great, I often felt that I would fall away and my brain fog was scary. I have been in a long study of COVID at Banner for the last 3 years. During that time, I developed neuropathy in one leg and foot, inflammation around my kneecap cap, and I have difficulty walking. I also have blood and iron issues. My brain fog has decreased significantly, but I do have short-term memory issues. I am now on a program called Brain HQ that seems to have improved my cognition. It's difficult for me to accept the changes. I sympathize with where you are and where you have been. All this is made worse by the fact that the medical community is frankly ignorant of what long COVID is and how we are affected by it. This forum has been a tremendous help. Just knowing we are not alone in this complex and ongoing illness has strengthened my resolve to keep going. Please feel free to contact me if you need to.
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7 ReactionsI have all of your exact symptoms. I have severe vagus nerve issues and neurological issues brought on from the virus. They can barely find a thing though. I have extremely dry painful eyes with floaters and blurry vision along with a dry mouth and trouble swallowing as part of my huge list of symptoms.It might just be Long Covid, but a Rhuematologist referred me to another Hospital with a Sjogrens Department that brings in Rhuematologists from Hopkins. Sjogrens can cause walking/Muscle Issues and attack every part of the body just like Lupus. I can barely walk, have lost most signals in my body such as thirst and feeling full and have Anhedonia which is a huge symptom of Long Covid. I had no idea until I was on another site and thousands of people suffer from it. I have lost the strength in my face to chew, swallow,smile,laugh,cry. Everything is slow motion. It is basically like I had a traumatic Brain Injury, but all of my Brain MRI's are clear. Alot of Doctors are treating LC like a Brain injury. Apparently people are having Good Luck with Cymbalta. Long Covid depletes your seritonin and literally sucks the life right out of you.People have also been having luck with HRT because covid can also really mess with hormones. I just wonder because I got attacked during Perimenopause and I was already so run down from severe periods,anemia and working in Healthcare if that was my downfall. I also exercised nonstop. I think even if your immune system is lowered by stress it is enough for Covid to take over. It also seems like the Healthiest people got LC the worse.So many people training for Marathons and Triathalons.