Long COVID
Severe → much betterIll 21 months before improving or writingNeeds ongoing treatment
Long COVID mostly bed-bound, now much better with rest and avoiding triggers
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 21 months
- Last post
- Jun 2024
In their words
- Condition: Long COVID
Ive had it now for 4 years and its never gone away.
In context ↗ - At worst: Severe
While I was bed-bound for long stretches, I can work now and do occasional mild exercise
In context ↗ - Now: Much better
If i was on average 35% of my normal self during the first year, i now fluctuate between 70-80%.
In context ↗ - Began after: COVID
All started the days I had covid and has persisted consistently for over a year and a half now.
Read from 60 of their posts and comments; links to the 32 this page draws on
Summary
Beacon 65983 got long COVID in March 2020 and was mostly bed-bound around month seven. Over four years they improved gradually by resting when flared, avoiding triggers, taking supplements including Tru Niagen, and eating beef as a staple, reaching roughly 70-80% of normal and working full time, though flares with PEM, tinnitus, palpitations and jaw and neck pain persisted. A second vaccine shot and a 2023 reinfection each set them back.
Ask Miruvor AI
What they tried
What they credit
Tru Niagen· Helped a lot · mainresistance breathing· Helpedbeef-based diet, avoiding carbs and sugar· Helped · mainbeef-based diet, avoiding carbs and sugar· Helped · maincold showers· Helpedthiamine· Helpedgarlic supplements· Helpedadrenal support (ashwagandha)· Helpedmeditation, yoga and stretching· Helpedapple cider vinegar· Helpedcaffeine pills· Helped
Also tried
limiting exertion / pacing· HelpedAdderall· Helpedaspirin· Helpedturmeric· Helpedconsistent sleep routine· Helpedfish oil (krill)· Helpedvegetarian / all-veggie diet· No changeivermectin· No changetime off work· No changetreatment for EBV· No changeCoQ10· No changeNAC· No changenootropics· Worsewalks and weights· WorsePfizer COVID vaccine· Worseweed edibles / smoking weed· Worseb12· Not saidb6· Not saidmulti-vitamin· Not saidepicor· Not said5-HTP· Not saidmelatonin· Not saidpre/probiotics· Not saidvitamin D· Not saidorgan supplements· Not said
Their words about each treatment
- nootropics · Worse
Ive gotten pretty yucky effects from them my self.
In context ↗ - resistance breathing · Helped
I have noticed certain type of breathing have helped me
In context ↗ - vegetarian / all-veggie diet · No change
I do eat healthily and have tried vegetarian to no success.
In context ↗ - beef-based diet, avoiding carbs and sugar · Helped
eating beef daily seems to help keep symptoms somewhat at bay ... i also try to avoid eating too much carbs/sugar
In context ↗ - walks and weights · Worse
I was taking walks but over time they left me with more and more PEM.
In context ↗ - ivermectin · No change
i tried a course of ivermectin, having long term symptoms and suspecting persistent virus, and it didnt do anything
In context ↗ - limiting exertion / pacing · Helped
I've had some success w limiting exertion, but I've had flare ups regardless
In context ↗ - time off work · No change
I mean, Ive taken time off and I havent gotten better.
In context ↗ - treatment for EBV · No change
I started treatment for ebv from LC 6 most ago and hasn't any change
In context ↗ - cold showers · Helped
Also cold showers help
In context ↗ - Tru Niagen · Helped a lot
i find the most effective one for combatting the fatigue is Tru Niagen
In context ↗ - Pfizer COVID vaccine · Worse
kicked my butt. 101-102 fever for a couple days.
In context ↗ - Adderall · Helped
I found a doc that gave me a low dose Rx for Adderall, at least I can get some extra focus
In context ↗ - aspirin · Helped
taken aspirin for over a year post covid and didnt do much besides some relief towards bouts of angina
In context ↗ - turmeric · Helped
I also take garlic supplements and turmeric.
In context ↗ - b12 · Not said
a b12 one or twice a week doesn't hurt either
In context ↗ - b6 · Not said
b6, (on and off for those two bc theyre strong)
In context ↗ - CoQ10 · No change
I still take coq10 but only for cardiovascular health no noticeable benefits
In context ↗ - NAC · No change
NAC did nothing for.
In context ↗ - consistent sleep routine · Helped
going to bed but 10 and waking up before 7 has helped
In context ↗ - thiamine · Helped
I have found thiamine to be effective from the B vitamins
In context ↗ - fish oil (krill) · Helped
Fish oil (krill for me) I take 1-2 daily.
In context ↗ - garlic supplements · Helped
I also take garlic supplements and turmeric. The thing is these all thin the blood.
In context ↗ - adrenal support (ashwagandha) · Helped
I also take adrenal support, there are a few things in there (like ashwagandha) that seem to help recovery from flare ups
In context ↗ - multi-vitamin · Not said
I also take a multi-vitamin on occasion, one that includes selenium.
In context ↗ - epicor · Not said
maybe once every few months, I take epicor for a few days
In context ↗ - 5-HTP · Not said
5htp/serotonin also may help on occasion but I have not been able to suss it out completely.
In context ↗ - melatonin · Not said
I was somewhat dependent on melotonin for a while but I managed to cut it out
In context ↗ - weed edibles / smoking weed · Worse
I think this does more harm than good to the autonomic regulation, but it gives me a mood boost
In context ↗ - meditation, yoga and stretching · Helped
Meditation / yoga / stretching / exercise - all great.
In context ↗ - apple cider vinegar · Helped
specifically itroducing apple cider vingear (including take a small shot in the morning) really seems to be important
In context ↗ - pre/probiotics · Not said
And of course pre/probiotics, somewhat frequently and regularly.
In context ↗ - vitamin D · Not said
Vit D important. C can't hurt.
In context ↗ - caffeine pills · Helped
i use the pills instead of coffee and i feel better for it
In context ↗ - organ supplements · Not said
i did start taking some organ supplements from amazon that i may help
In context ↗
Approaches: Alternative therapies · Diet · Mind-body practices · Other drugs and medicines · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 7 months after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March 2020 | COVID-19 infection, long COVID beginsim since march 2020In context ↗ | Not stated | |
| around month 7 (late 2020) | mostly bed-bound for long stretches7 months was around the worst period for me, when i was mostly bed-boundIn context ↗ | Severe | |
| May 2021 | flare after second Pfizer shotkicked my butt. 101-102 fever for a couple days. really achy those days as wellIn context ↗ | Moderate | |
| August 2021 | able to do weights after cutting triggersat one point I could barely get out of bed for months- but once I cut out enough triggers i have since been able to do weightsIn context ↗ | Mild | Pacing and the energy envelope |
| March 2022 | working full time and doing light jogsI can do some light jogs, work 7.30-2.45 5 days a weekIn context ↗ | Mild | |
| April 2023 | palpitations and arrhythmias after COVID reinfectionnow again (I was positive about a month ago) I am getting palps and arrhythmias a lot againIn context ↗ | Not stated | |
| February 2024 | managing with diet and routine, 70-80% of normalIf i was on average 35% of my normal self during the first year, i now fluctuate between 70-80%In context ↗ | Mild | |
| March 2024 | still fluctuating, 85% on best days and half that on bad onesIm still at 85% on my best days though and sometimes half of thatIn context ↗ | Mild |
Adverse events
- “while they may show good effects in some ways they are plenty sketchy and unproven, Ive gotten pretty yucky effects from them my self” In context ↗ Side effects
- COVID vaccination as treatment“kicked my butt. 101-102 fever for a couple days. really achy those days as well” In context ↗ Side effects
- COVID vaccination as treatment“The vaccine causes a flare up in me as well. It started two weeks in and now about a month in I feel the flare up starting to subside.” In context ↗ Autoimmune or inflammatory flare
- “I think this does more harm than good to the autonomic regulation” In context ↗ Made symptoms worse
- Aspirin“If I get worsened clotting type of stuff from the PEM I start taking the baby aspirin again. I deal with the side effects because they are less severe than they were” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
slight exertion triggers PEM that can last weeks easily
In context ↗ - Brain fog
can easily enter a spiral where I am brainfogged
In context ↗ - POTS & dysautonomia
more sensitive POTS etc
In context ↗ - Mast cell (MCAS) & allergies
i do get small allergy response
In context ↗ - Sleep problems
i actually feel worse if i sleep too much, it seems to aggravate the dysautonomia
In context ↗ - Pain & fibromyalgia
I still have pain in my jaw from when I got sick
In context ↗ - Headaches & migraine
brainfogged, tired, ears ringing, ear/neck pressure
In context ↗ - Breathlessness
I get this tight chest feeling and shortness of breath
In context ↗ - Heart symptoms & palpitations
I am getting palps and arrhythmias a lot again
In context ↗ - Anxiety & low mood
if i wasnt smoking weed id be miserable
In context ↗ - Flu-like symptoms
a lymph node swollen in my neck
In context ↗ - Tinnitus
It correlates with the tinnitus
In context ↗ - Temperature regulation
In the colder weather ive been feeling it set in more easily
In context ↗
Ask Miruvor AI
Similar stories
-
Long COVID with PEM and brain fog, now close to normal after keto and fasting
Lake 45346 got long COVID after a COVID infection in August 2022 and had PEM, brain fog, broken sleep and carb intolerance. He credits keto, fasting, fermented foods, low-dose naltrexone, cold plunges, nightly guanfacine, sauna and high-dose thiamine TTFD…
-
Long COVID with tremors and brain fog, now nearly normal after naltrexone and Claritin
Neurological long COVID began in early 2023, with tremors, ear ringing, brain fog, dizziness and fatigue. Sleep, NAC, glutathione and gentle daily exercise got them mostly recovered in three months. Cryotherapy and red-light therapy left them symptom-free,…
-
In bed with long COVID nearly 12 months, now back to normal after diet and supplements
After COVID, this long-hauler was in bed nearly 12 months and had four confirmed infections. At 14 months they changed their diet, took large supplement stacks, fasted, walked and exercised progressively, took ice baths and used sauna. They felt better by…
-
Not enough detail to draw a path
Barely able to walk with long COVID, now improved to 60-80%
A 43-year-old Arizona man developed long COVID in 2022, about two months after a booster, and at times could barely walk, losing 40 lb, mostly muscle. Lexapro, later Wellbutrin, microbiome work, lactoferrin and nicotine patches were among his treatments; he…