Long COVID
Moderate → much betterIll 2 years before improving or writingNeeds ongoing treatment
Long COVID with fatigue and brain fog, now about 85% after vaccination and time
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- May 2024
In their words
- Condition: Long COVID
I've had Covid several times and my Long Covid has been a rollercoaster of physical and emotional symptoms.
In context ↗ - At worst: Moderate
a year ago when I was having trouble standing
In context ↗ - Now: Much better
Wildest shit is I've been back to about 85% lately. Sleep disturbances aside, I feel normal almost enough to deal with the PTSD of two and a half years of LC symptoms.
In context ↗ - Began after: COVID
First infected 3/4/21. Terrible stuff for over a month.
In context ↗
Read from 65 of their posts and comments; links to the 31 this page draws on
Summary
Ken, a stay-at-home father, fell ill with COVID in March 2021 and spent two and a half years with fatigue, PEM, breathlessness, brain fog and heart-rate spikes, plus a January 2023 reinfection and herpes encephalitis. He credits COVID vaccination, especially the 2023 bivalent booster and Novavax, and time, for reaching about 85%; he still cannot run or lift hard. He had two days of severe GI illness a week after the bivalent shot.
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What they tried
What they credit
Also tried
Zyrtec, Claritin and Benadryl· HelpedZyrtec, Claritin and Benadryl· HelpedZyrtec, Claritin and Benadryl· Helpedyoga and stretching· Helpedlight strength training· Helpedacupuncture· Helpedhydrocortisone cream· HelpedAcyclovir· HelpedOTC antifungal treatments· Helpedswimming· HelpedWinix air purifier and more frequent HVAC filter changes· Helpedtherapy· Helpedsleep routine and sleep hygiene· Helpedmelatonin· Helpedpushing hard back to running and lifting· WorseCBD gummies· Worsesmoking grass· Much worsemagnesium· Not saidAtivan and Xanax· Not saidAtivan and Xanax· Not saidVitamin B complex· Not saidVitamin C· Not saidAlpha Lipoic Acid· Not saidsaline nasal rinse and iodine nasal spray (plus CPC mouthwash)· Not saidVitamin D· Not saidcalcium· Not saidberberine· Not saidquercetin· Not saiddrastically changed diet· Not saidkombucha· Not said
Their words about each treatment
- J&J, Moderna booster, bivalent booster and Novavax · Helped a lot
I’m certain it made difference in eradicating brain fog and increased energy levels.
In context ↗ - magnesium · Not said
I take Vit B, magnesium, sometimes Benadryl but that stuff wasn't helping much.
In context ↗ - Zyrtec, Claritin and Benadryl · Helped
Assuming you've tried allergy meds? Zyrtec or Claritin? They seemed to help a little.
In context ↗ - cold showers and ice foot baths · Helped
I was religiously taking cold showers. Measured breathing during them. As cold as you can stand and Wim Hof breathing. Again idk but it does seem to help.
In context ↗ - Wim Hof breathing and deep breathing exercises · Helped
I do deep breathing exercises. They really seem to help. But some days doesn't seem like it does much.
In context ↗ - pushing hard back to running and lifting · Worse
I didn't know to rest. I pushed hard back to running, lifting that summer.
In context ↗ - yoga and stretching · Helped
Yoga, stretching, light strength training, and Accupuncture have helped.
In context ↗ - hydrocortisone cream · Helped
I am using hydrocortisone and doing ice foot baths (supposedly helps circulation) and they look a thousand times better.
In context ↗ - Ativan and Xanax · Not said
Stayed at 150 for five hours despite them giving me Ativan for “anxiety.”
In context ↗ - Acyclovir · Helped
I decided I'd take an acyclovir (200 mg) as I read somewhere that it can help with inflammation. Within an hour the tremors had subsided.
In context ↗ - resting when he could · Helped
I definitely did a lot of resting when I could. Sleeping whenever my youngest slept.
In context ↗ - smoking grass · Much worse
Smoking grass made things infinitely worse. Hangover for a week after two puffs.
In context ↗ - OTC antifungal treatments · Helped
Interchanging different OTC treatments. Finally got through it.
In context ↗ - swimming · Helped
Just swam 40 minutes. The measured breathing of swimming and ability to just coast seems to help.
In context ↗ - Winix air purifier and more frequent HVAC filter changes · Helped
I think it has helped breathing issues.
In context ↗ - therapy · Helped
Therapy helps, but the fear is tangible
In context ↗ - Vitamin C · Not said
I've been taking Vitamin B complex and Vitamin C.
In context ↗ - Alpha Lipoic Acid · Not said
I take Alpha Lipoic Acid which supposedly helps with the central nervous system
In context ↗ - taurine · Helped
Have you tried taurine and creatine? I think they've helped me.
In context ↗ - saline nasal rinse and iodine nasal spray (plus CPC mouthwash) · Not said
I clean my nose twice a day with saline and if feeling a little sick or had a day of a lot of interaction I use an iodine spray
In context ↗ - Vitamin D · Not said
I use vitamin B, D, calcium, berberine, quercetin, taurine, and creatine.
In context ↗ - intermittent fasting · Helped
I do believe intermittent fasting has helped me. Basically done eating at 4 pm and don't eat till 7 am.
In context ↗ - drastically changed diet · Not said
I drastically changed my diet and often fast for 15 to 16 hours a day.
In context ↗ - kombucha · Not said
drink Kombucha when I remember to buy it
In context ↗ - sleep routine and sleep hygiene · Helped
Routine. Routine. Routine. It's the only thing that's saved me.
In context ↗ - melatonin · Helped
I take 3 mg of Melotonin in the evening and that has totally helped sleep.
In context ↗ - CBD gummies · Worse
I had eaten a 10 mg/20 mg CBD gummy and I swore off them after this event.
In context ↗
Approaches: Alternative therapies · Amino acids and carnitine · Diet · Mind-body practices · Pacing · Supplements · Vaccination
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March 4, 2021 | first COVID infection, severe for over a monthFirst infected 3/4/21. Terrible stuff for over a month.In context ↗ | Moderate | |
| mid April 2021 | J&J vaccine seemed to help; fatigue, PEM and lung tightness remainedGot J&J and seemed to help.In context ↗ | Moderate | COVID vaccination as treatment |
| August 2021 | nearly collapsed at a museum with his children; depression, malaise and fatigue for about four monthsIn Aug. '21 I had incredible depression, malaise, fatigue. You name it for about four months.In context ↗ | Moderate | |
| fall 2022 | trained for and completed a triathlon; back to about 90% apart from his lungsTrained and completed a triathlon! in August of ‘22. ... In fall last year I felt like I was back to about 90%.In context ↗ | Near normal | |
| January 8, 2023 | reinfection or crash with awful breathing, fatigue and brain fogThen in 1/8/23 contracted Covid again. Absolutely horrible breathing issues. Fatigue. Brain fog.In context ↗ | Moderate | |
| March 2023 | started to feel way better after the bivalent booster, though still having trouble standingStarted to feel way better almost immediately into March ... I was having trouble standing. | Moderate | COVID vaccination as treatment |
| April 2023 (Easter) | heart rate 170 for nearly five hours, ER visit, nothing helpedon Easter my heart rate went to 170 for nearly five hours. Was in ER and nothing seemed to help.In context ↗ | Mild | |
| May 7, 2023 | first time over 90% since the previous springTwo years and one month and today was literally first time I feel over 90% since last spring.In context ↗ | Near normal | COVID vaccination as treatment |
| May 27, 2023 | herpes simplex encephalitis with skyrocketing heart rate, hallucinations and tremorsImmediately upon laying down my heart rate skyrocketed. Then the hallucinations followed soon after.In context ↗ | Moderate | |
| May 31, 2023 | tremors settled within an hour of a 200 mg acyclovir; able to take the kids to the moviestook a 200 mg acyclovir and evened out within an hourIn context ↗ | Mild | Acyclovir |
| September 2023 | LC symptoms improved drastically, started writing againMy LC symptoms have improved drasticallyIn context ↗ | Mild | |
| March 2024 | about 85% after Novavax in December, but heart rate spikes and poor sleep after exertionI’m back to about 85% but if I run or over exert HR goes bananas and I can’t sleep.In context ↗ | Mild | COVID vaccination as treatment |
| May 23, 2024 | still about 85%, sleep disturbance aside nearly feels normalI've been back to about 85% lately. Sleep disturbances aside, I feel normal almost enoughIn context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“it made me feel worse or didn’t alleviate anything” In context ↗ Made symptoms worse
- COVID vaccination as treatment“The following week was sick in bed with GI and headache for 48 hours.” In context ↗ Gut side effects
- COVID vaccination as treatment“It hit me hard (chills and weird body aches and even some psychosis)” In context ↗ Side effects
- COVID vaccination as treatment“It hit me hard (chills and weird body aches and even some psychosis)” In context ↗ Mood or psychiatric effects
- Diphenhydramine (Benadryl)“benadryl though it gives me a hangover does sometimes help me sleep.” In context ↗ Side effects
- CBD (cannabidiol)“my heart rate went to 170 for nearly five hours. Was in ER and nothing seemed to help. I had eaten a 10 mg/20 mg CBD gummy and I swore off them after this event.” In context ↗ Heart rhythm problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessHeart symptoms & palpitationsLoss of smell or tasteNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
I still have PEM but it’s absolutely improved.
In context ↗ - Brain fog
No brain fog and can think
In context ↗ - Heart symptoms & palpitations
if I run or over exert HR goes bananas and I can’t sleep
In context ↗ - Sleep problems
Sleep disturbances aside, I feel normal almost enough
In context ↗ - Pain & fibromyalgia
my spine is in a lot of pain
In context ↗ - Breathlessness
Sleep disturbances. Trouble breathing. Heart rate volatility.
In context ↗ - Neuropathy & tingling
I definitely have a lot of nerve damage
In context ↗ - Anxiety & low mood
Mental health been in toilet because my physical health has been so mercurial.
In context ↗ - Tinnitus
Fatigue. Tinnitus. Shaking and quivering legs.
In context ↗ - Loss of smell or taste
I recovered my smell, which, fortunately was only absent for three days
In context ↗
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