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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 , I have been diagnosed with Myoadenylate Deaminase Deficiency.
I have trouble walking sometimes and my legs always have a weird senstation and pain. Do you have something similar?
I have read that this condition can cause muscle pain and cramps. It can also cause muscle weakness and fatigue. I fall into the second category, but the weakness is better than it used to be. I hope you were given some direction on remedies. One of the supplements I take daily is ribose. I was also directed to take Creatine, folic acid, carnitine, COQ10, and NAC. More recently, glutamine was added. No miracles yet, but I’m doing better.
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4 ReactionsI’m sorry that you’ve had such an extreme form of Long Covid. However, I salute your amazing ability to carry on through so much suffering, including being disbelieved and dismissed.
Cases like yours provide a sobering view of how devastating Covid can be. Also, an example by which to gauge the relative burden of our own symptoms: my PEM confers a remarkably light burden by comparison. For that I am grateful!
Keep in touch with the Covid researcher: new clinical trials that might benefit you will be coming along. Check clinical trials.gov.
May you find the medical support and “moral support” you need!
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3 ReactionsI have also lost some hearing and some sight. I wear hearing aids that don’t help much, and glasses that make me dizzy. I have seen all the doctors and specialists and taken all kinds of treatments. Nothing stops this thing.
My hearing and vision continue to deteriorate.
My digestion is terrible with constipation.
After trying so hard to find treatment for two and a half years, I just don’t think there’s a treatment for me that works.
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2 ReactionsThis is my first time on here, just discovered it so I’m pretty sure I just posted previously in the wrong place.
I had Covid in late Dec 2022/2023. After being dismissed from hospital I was diagnosed with what docs described as “Covid induced” heart failure and pulmonary fibrosis. My active life has been replaced by almost weekly visits to doctors appt. My previous longtime medication treatment for thyroid and anxiety (two doctors) is now 5 different medications/five different doctors.
After researching I feel sure some of my current health problems are from the medication and I’ve lost confidence in my doctors. I would like to ditch most of the meds and just concentrate on healthy living but I’m afraid of what would happen.
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1 ReactionWhat is an integrative medicine doctor? Are they typical western medicine docs? I heard of a program at northwestern university but the wait is like a year. I sent someone to look at my total system and all the meds
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1 Reactionericy210, No, they are not typical western medicine docs. The one I went too was western medicine & eastern medicine....but more eastern medicine. He looked at the whole problem and instead of adding more medication he ran tests to get to the root of Long Covid. I could not tolerate the infusions or the glutathiane (Sp?). He ran allergy tests and also confirmed that I had gene mutation issues to where my body does not detox like it should. I am on so many supplements....too many to name, but, I do believe some of them are helping after months of being on them. My biggest ongoing issue with LC is increased joint pain, fatigue, chronic asthma & brain fog. It knocked my already weakened immune system for a loop.
I pray that you get some answers to treat Long Covid as it certainly is a trying malady. Blessings & Prayers....
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4 ReactionsHello longtimenotheard, I am so sorry. Single mom here, I also got covid way beginning when I was teaching. I wish I had a magic ticket for you, I have taken screen shots over the years of different protocols I have tried..I tried many until my savings ran out. Most effective which I wish I could still do were Osteopathic treatments. There is so much info. Since you are already taking so much I would add a simple probiotic, maybe the jarrow femdopholis or Florastor to get some good flora in you to balance the antibiotics. Do a methylated B vitamin just in case, magnesium to help sleep at night (calm supplement or ancient minerals salt spray on your feet).
Some have had success with nicotine patches (the lowest dose) for energy and to stop viral replication. You could also drink horsetail tea or eat high nicotine foods. Not a Dr, just been through it and these are things I saved so thought I would share. I know what its like going through this and not having anyone around while trying to be a good mother...its a heros journey. I see you and sending much love.
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