I’ve been living with long covid since late Spring of 2022

Posted by longtimenotheard @longtimenotheard, Jul 18 9:15pm

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.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

bmd | @bmd | Jul 21 6:42am

I have also had long covid symptoms, many similar to yours, it mine lasting neurological symptoms and dysautonomia. But I found a pulmonologist, of all specialists, who prescribed LDN- I’ve been taking it for seven months and he said it could take up to 6 months before I got relief. I am happy to report that my fatigue is less, headaches much less, and horrible rumbling sounds in my head, much, much better!
I had been through docs if every specialty, and it wasn’t until my hematologist referred me to his friend who was on the front lines of Covid, helping patients survive Covid pneumonia, did I finally get the help I needed.

LDN, low dose naltrexone, is inexpensive, easy to take- one small capsule before bed- and has been very effective. I highly recommend everyone suffering to try it. It’s used for many medical conditions, but few people know about it. Crone’s disease, cancers(and it helps retain hair during chemo) and many other conditions.
Consult with a knowledgeable doc and make sure it’s prescribed from a reputable pharmacy- my doc uses a pharmacy in Florida. I live in NJ.

There are no side effects that I experienced, and it has been very effective. My symptoms are not 100% gone, but very diminished.

Good luck to all.

highlands | @highlands | Jul 22 12:43pm

My Covid LH just started Mid May 2024. I’ve put my entire story on here already. However I hear the comments of different symptoms. Yours is the first I’ve read with extreme dry eyes with blurred vision. I see my Eye doctor for this tomorrow.
In addition I have extreme to moderate dizziness at different times . My primary doctor wants to do a brain scan but I told him I’d like to do eye test first. The problem with me is the local doctors are NOT familiar with COVID LH. And a clinical research doctor won’t see you until you’ve had the symptoms for 12 weeks.
This support group and several others I’ve joined have been extremely helpful and supportive . The one thing I continue to hear and read is that there is really nothing to help… it’s just time. I’m 73 and praying all this goes away soon.
Thank you to everyone for your support.

dloos | @dloos | Jul 23 10:20am

In reply to @bmd "I have also had long covid symptoms, many similar to yours, it mine lasting neurological symptoms..." + (show)

I have been taking LDN for three months. No discernible difference for me. My main issues are, deteriorating vision with dry eye, hearing loss with tinnitus and hyperacusis and extreme constipation.
I’m wondering when LDN started to make a significant difference for you? I have also seen all the doctors, and tried many therapies that did not work. I’m beginning to think LDN doesn’t work for me either. Getting very discouraged after fighting this thing for 2 1/2 years. Maybe three months LDN is not long enough to get results??

jennwaltko | @jennwaltko | Jul 23 11:04am

I have also been suffering bad gut issues since having COVID in January 2022. Bloating, nausea, vomiting, fevers, constipation and diarrhea.

bmd | @bmd | Jul 23 11:52am

In reply to @dloos "I have been taking LDN for three months. No discernible difference for me. My main issues..." + (show)

My doc told me when I started taking it, it could take up to 6 months to get results. It was just about 6 months for me, so don’t give up yet. I take 3 mg every night before half hour before bed. He did say I could try 4.5 mg if not seeing results. But I am so staying with 3 mg. I plan to take it indefinitely as it is helping, and there are no side effects. And as drugs go, it’s reasonably priced.

I also shave horrible dry eyes and started using OTC moisturizing drops without preservative. Before bed and upon waking and it helps tremendously. Drops are called Ivizia.

dloos | @dloos | Jul 23 12:14pm

In reply to @bmd "My doc told me when I started taking it, it could take up to 6 months..." + (show)

Thanks for the info! I will continue. I titrated slowly up to 5mg on LDN. I see my doctor in a couple weeks, and we’ll discuss, but I want to give it plenty of time to make sure I’m not giving up too soon. I have had no side effects either, which is unusual for me.

I have been using Systaine eye drops at night, and Soothe during the day. I will look for Ivizia and see if I like better. My eyes are very cloudy with severe light sensitivity, and vision getting worse, and worse. I’m now wearing prism eyeglasses but they don’t seem to be helping.

I’m glad you have found something to ease your symptoms. Fingers crossed it may help me too.

lkirnbauer | @lkirnbauer | Jul 24 9:07am

I read your story and just wanted to say how sorry I am that you’ve suffered for so long without any real answers. I too have LC and contracted Covid in December of 2022. I lost my taste and smell on day 2 of the virus and still don’t have it back. I’ve had 4 Stellate Ganglion Block injections to help regain it and only very slight improvement with them. I still can only detect salty, sweet or sour but no flavors and smell is at 0. I have an appointment in August for a 5th injection but fear that it will not help.

dloos | @dloos | Jul 24 9:18am

In reply to @lkirnbauer "I read your story and just wanted to say how sorry I am that you’ve suffered..." + (show)

I lost taste and smell too, but mine did return. It’s a mystery how this virus works against us in different ways. For me, I struggle with hearing and vision issues. It makes me dizzy all the time and unable to live my normal life.
I have fallen a couple times so I have to be very careful.

I continue to work with Neuro-ophthalmologist, and I’m trying to find an Audiologist with some knowledge of Lenire treatment for tinnitus. It is an ongoing struggle.

Good luck to you❤️

nataliem | @nataliem | Jul 25 8:37am

This post caught my eye due to the reference to mononucleosis. I was diagnosed with mono in October of 2019, and I have been sick ever since, so I’m closing in on 5 years. I have spent thousands of dollars and seen every practitioner you can imagine with a minimum of results. Life has been miserable to say the least. Depression, loss of job, limited ability to function, extreme fatigue, dizziness, nausea, burning eye pain, headaches, insomnia, and on and on. I finally went to an immunologist who is actually trying to help me, which no one else did. He diagnosed me with Myoadenylate Deaminase Deficiency, Sjogren’s Syndrome, Anti-phospholipid antibody syndrome, and Raynaud’s Disease. Overwhelming, to say the least. I am now taking a series of supplements that seem to be doing me some good, and I have improved by about 50%. I still have to nap every day, I cannot drive long distances, and any sort of physical or emotional stress is beyond my ability to cope. I will be bedridden for a couple days. BUT, I now have hope. I haven’t given up.
I’m hoping this post may help someone else dealing with this misery and a changed life. The answers are out there, and I will not stop looking and trying different things, so please don’t give up. You are not alone.

yaya77066 | @yaya77066 | Jul 27 12:33am

In reply to @nataliem "This post caught my eye due to the reference to mononucleosis. I was diagnosed with mono..." + (show)

I had mono in 1970. It took 6 months to recover. Now I have Long Covid. I'm learning there is a strong link between Epstein Barr and Long Covid. Long Covid induced A-fib. Now I'm on meds and an moderate, at home exercise routine my heart doctor insists on. It has done some good. I'm able to stave off the exhaustion a bit better so I can get things done at home.
Perhaps struggling to do some small bits of exercise may help. I also take vitamins and eat as clean and healthy as possible.
I've had Celiac disease for many years. I probably became susceptible to it from the Mono. Good luck in your recovery. Sometimes we have to fight for it.