"Long Covid treatment stories" [Web article]

United Kingdom

Not sure if anyone's ever read this but the symptoms line up with ME is staggering and they are almost all on antiviral therapy (valac mainly) for ebv, cmv and hsv and vzv re-activations.

One girl describes pain in the nerve running from her ear down her neck, which is odd as I have had that plenty over the last few years and always assumed it was EBV.

At any rate there are some stories of success in this article:

"I haven’t had a symptom-free day since I got sick with COVID in March of 2020. I now struggle with cognitive symptoms that resemble post-concussion syndrome, dysautonomia (dysfunction of the autonomic nervous system), eczema, and allergies that can cause difficulty breathing. I was an avid runner before getting sick, as well as a singer and yoga enthusiast.

My EBV antibody levels have been so high post-COVID. I first checked them at the three-month point and monitored them every few months. I’m on Famciclovir, an antiviral, to combat this. When I went on it, the first noticeable difference I had was in my breathing. It improved significantly! I still deal with releases in my breathing related to hyperventilation syndrome though, which is prevalent among many long COVD patients."
“I was infected with COVID in March of 2020. After clearing the infection, I had several episodes of elevated heart rate, throat tightness, trouble swallowing, dizziness, allergic reactions when eating any food, and crippling fatigue which forced me into a wheelchair.

After several hospital admissions for starvation, dehydration, and malnutrition, my primary care physician tested me for EBV. I was shocked to discover I had extremely elevated levels of EBV. For several months, I had no appetite and the glands in my neck were swollen.

Now, more than a full year later, I continue to have an occasional low-grade fever, fatigue, and persistent throat pain nearly every day. Some days I have to gargle with salt water every few hours just to be able to swallow food.

Throughout my journey, I have come to learn from the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community who have embraced us in the long COVID community. They too have elevated EBV levels even 30 years after their initial infection and must take antiviral medicine to keep the throat pain and fatigue at bay. This will be my next course of action, as I am in desperate search of some relief from my EBV symptoms.”
If ME had had the same attention I'd be amazed if all the same viruses (or just a few) wouldn't pop up.

The nutty thing is these are all American stories. This diagnosis in the UK is unheard of and NICE still have an article from 2007 saying antivirals must not be given to ME patients.

I know they don't work for everyone, but without a doctors assistance I think it's even easier to have difficulty in knowing whether to continue with them in spite of side effects/complications.
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Senior Member
The nutty thing is these are all American stories.
I have said it a few times but its like watching a caveman rub sticks together to make fire compared to what the Americans do. But oddly I don't think the NHS is that far behind in other areas, its got most of the modern equipment you would expect of a western medical system but it just doesn't apply medicine to those with post viral conditions it either gives you exercise or CBT or plies you with anti anxiety drugs. Its firmly stuck in its psychological view of the illness.

50% of the CFS clinics are still in open revolt against the NICE guidelines. You have long covid sufferer research papers about pyschology and exercise coming out more frequently in the UK (more frequently than anything real) and blogs and everything else defending the approach. The UK is not going to be the place this gets cracked, it will be the last place to offer the treatment. So getting those anti virals despite all the obvious signs they might be a good idea is just pot luck you have a rebel doctor.


Senior Member
Quantitative Chest CT Assessment of Small Airways Disease in Post-Acute SARS-CoV-2 Infection

The long-term effects of SARS-CoV-2 infection on pulmonary structure and function remain incompletely characterized.

Excerpt: Air trapping correlated with the residual volume to total lung capacity ratio (RV/TLC; r=0.6, p<.001)
In survivors of COVID-19, small airways disease occurred independently of initial infection severity. The long-term consequences are unknown.
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