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Continuing late symptoms
In April 2025, I posted a long post of my COVID/Long COVID journey that began in late March/early April 2023.
The most recent suspected symptom that I've had since the beginning but because all the literature I could find says it should clear up in not more than 2 months, tho' the longest "case on record" lasted 22 months, is suspected COVID toes.
From the start of testing positive, when I had a rash on my inner right ankle and inner right thigh near my knee, I also had an ingrown right toenail. ER had no podiatrist on duty at the first visit or a subsequent one. The dermatologist was only interested in the rashes.
I ultimately saw a podiatrist tho cut away the ingrown part of the nail. Alas, both big goes, and in particular the right one, gets ingrown nails on both sides of the big toe necessitating visits. (If only they had a frequent visitor card!) Now the left big toe is red and swollen.
With both lymphedema and lipedema, both triggered by COVID infection, my right foot is sometimes swollen. Shoes - and I've tried soooo many including SAS for WW feet [horrible on left foot where it was far too big; too tight in toe on right] - are impossible. Podiatrist thought my Birkenstock clogs might case the rubbing since my foot slides in it. I got Birkenstock sandals with two straps so no sliding and my toes, albeit in socks, are secure and toe not rubbing and not getting better.
Are there more "shoes to drop" (bad pun right?!) in symptoms - hearing lost 9 months in after 7 months of musical tinnitus that continues; lymph- and lipe- demas; tongue and mouth swelling and cold-sore like inside mouth "rash"; peeling heel bottoms; dramatic breast size changes; and I'm probl leaving something out. I'm exhausted and in constant pain (from these and from spinal stenosis and arthritis) and would like to curl up in a ball if only I could lie down!
Thanks.
JE
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JE Your 'rash' symptoms caught my attention. Back in 2020 that was the only symptom I had with first Covid infection. It cleared completely within a month and there were no other issues. However, within a month of my one and only covid vaccine in 2021, I began to have symptoms you reported for mouth and tongue swelling. I thought I would ask you if you have read anything about: Hidden Inflammation and Immune Dysregulation. The Portland Clinic has done some work in this area for long covid sufferers. This is on one of their medicinal journals:
"Even after a covid viral clearance, the immune system may remain “stuck” in overdrive. This can be measured, in part, through inflammatory markers such as cytokines, chemokines, and complement proteins. One such marker, complement C4a, is often elevated in patients with chronic inflammatory response syndrome (CIRS). [Personal Note: This is the lab test your doctor can order through Lab Corp https://www.labcorp.com/tests/004330/complement-c4a ]
"Elevated C4a has also been noted in subsets of Long Haulers. Elevated C4a reflects ongoing complement activation—an immune cascade designed to protect against pathogens. This elevation can become pathological when persistently engaged. This kind of immune dysregulation creates a milieu where the body is constantly fighting perceived or residual threats, often leading to mitochondrial dysfunction, mast cell activation, impaired detoxification, and worsening neurologic and cognitive symptoms. The immune system, in effect, becomes the problem, not just the solution."
For me, this information was very helpful in beginning to isolate and then heal the many symptoms I was suffering as a long hauler. My T-Cell studies revealed I had 'impaired detoxification' processes and my body was unable to expel residual Covid fragments.
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3 Reactions@pattig09 - THANK you so much. Apologies for taking so long to reply. Information from labs is files on my computer and for various reasons, I use my phone v. coming to check files. I wanted to do so before responding. I'd never heard from the doctors of "Hidden Inflammation and Immune Dysregulation" or if I'd read it, do not remember.
I do not see a C4a blood test from the last two years. LabCorp is where all my tests have been conducted. It will be relatively simple to have this run again in hopes one of the docs involved will write an order for it.
My hopes are up - oddly, considering a higher number would indicate what it may be. I know from reading that some of my symptoms (activated lipedema) won't stop or so I've read. If tho' it helps my mouth and tongue and even slows the lipedema outbreaks, I'd be glad.
Do you think that the vaccines had any impact? I'm a strong believer in getting them - flu and COVID in the Fall - and do not want to have greater exposure.
You also mentioned that isolating allowed healing to begin for many symptoms. I had B-cell non-hodgkin lymphoma in 2007, with radiation that appears to have kept it away since tho' the ID doc believes it should be watched more carefully now because of long haul symptoms. I'm curious too to learn if what I believe is COVID toes in both big toes is what is causing the inflammation and ingrown nails. So far my (fabulous) podiatrist - only since COVID when the nails grew in - and I both thought it was possibly other causes. Now in hot weather wearing sandals with toes exposed and no foot sliding, we are flummoxed about anything other than COVID toes.
Are you willing to provide here more about how you have managed since knowing what you learned about the symptoms? If not, is there a way for us to, if I learn more about mine, to correspond directly with you?
Off to send this to various docs. With immense gratitude, @pattig09.
Joan
@jeindc Send me a private message here in the Long Covid group of Mayo for a deeper chat. Also, in my profile everything I've researched and solutions that worked for me are posted as linked to my actual symptoms. You may find reading my posts will provide data that could help.