Long COVID
Severe → relapsedNeeds ongoing treatment
Long COVID breathlessness, POTS and PEM; breathlessness manageable, then relapse
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2026
In their words
- Condition: Long COVID
I’m a March long hauler with chronic sob
In context ↗ - At worst: Severe
then got it again and back to 20-30% for 3 months now
In context ↗ - Now: Relapsed
I was on my way to recovering around 70%, then got it again and back to 20-30% for 3 months now
In context ↗
Read from 41 of their posts and comments; links to the 18 this page draws on
Summary
A Bay Area man in his early 30s fell ill with COVID-19 in March 2020 and spent years with crippling breathlessness, later POTS, PEM and migraines. Hyperbaric oxygen caused a severe flare, and a September 2021 reinfection dropped him to 20-30% of normal. He kept working. Plavix, nebulised budesonide and oxygen finally made his breathlessness manageable, though PEM and migraines remained.
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What they tried
What they credit
Also tried
POTS therapy program (CHOP Modified Dallas POTS Exercise Program) / PT for POTS· Helped · wore offcolchicine· HelpedBenadryl / antihistamines· No changeAdvair (ics/laba inhaler)· WorseDulera· WorseSpiriva· WorseHydrocortisone· Worsehyperbaric oxygen (soft chamber)· Much worseniacin· Not saidquercetin· Not saidvitamin D· Not saidomega 3· Not saidvitamin C· Not saidmultivitamin· Not saidprednisone· Not saidPepcid· Not saidacupuncture· Not saidfunctional medicine doctor (gut healing)· Not said
Their words about each treatment
- inhaled corticosteroids (ICS, nebulised budesonide) · Helped
I started an inhaled steroid in June after a PFT showed mild constriction
In context ↗ - Advair (ics/laba inhaler) · Worse
Note I was tried on ics/laba inhaler in July but reacted terribly so out put back on ics
In context ↗ - POTS therapy program (CHOP Modified Dallas POTS Exercise Program) / PT for POTS · Helped
I started this POTS therapy program in august and feeling better until last month (mid October) hit a wall
In context ↗ - niacin · Not said
I started taking niacin 50mg about a month ago
In context ↗ - quercetin · Not said
the only thing that changed was i stopped taking quercetin
In context ↗ - vitamin D · Not said
taking my supplements (c,d, omega 3, niacin)
In context ↗ - multivitamin · Not said
tried a new multivitamin the night before but it was about the same as my prior multivitamin
In context ↗ - Dulera · Worse
Note this happened exactly 2 weeks ago after trying a new inhaler (dulera), But this was full on hives
In context ↗ - prednisone · Not said
my endocrinologist recommended 15 mg prednisone taper 5 days ago. I’m on my 5th day and not noticing a massive improvement
In context ↗ - Benadryl / antihistamines · No change
18 months and antihistamines don’t touch my sob
In context ↗ - Pepcid · Not said
I took two Benadryl and Pepcid and by the time I got to the ER it had mostly subsided after about 40 minutes
In context ↗ - Spiriva · Worse
bad reaction to 3 and could never tolerate - always made me worse, including spiriva
In context ↗ - Hydrocortisone · Worse
As I did not respond well to a trial of Hydrocortisone
In context ↗ - hyperbaric oxygen (soft chamber) · Much worse
I recently did a soft chamber one from advice from others and it’s thrown me into a severe crash
In context ↗ - acupuncture · Not said
gonna stick to acupuncture
In context ↗ - functional medicine doctor (gut healing) · Not said
trying to heal my gut through a functional medicine doctor
In context ↗ - colchicine · Helped
colchicine helped it - And then when I came off it it just came back
In context ↗ - Plavix · Helped a lot
Plavix helped me a lot here.
In context ↗ - oxygen concentrator · Helped
Also started oxygen concentrator & nebulized budesonide. It’s gone from my worst symptom for 3 years to sorta manageable.
In context ↗ - LDN · Helped
I noticed a difference at 1.5mg.
In context ↗
Approaches: Hyperbaric & oxygen · Anticoagulants · Other drugs and medicines
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 5 months after onset: the story doesn’t say how ill they were before that. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| August 2020 | felt better on a POTS exercise programI started this POTS therapy program in august and feeling better until last month (mid October) hit a wallIn context ↗ | Mild | Graded rehab and self-made programmes |
| November 2020 | hit a wall after colds in Octoberfelt like I was getting better September October but then took a big turn in NovemberIn context ↗ | Mild | |
| June 2021 | worst flare of the year after a hyperbaric oxygen sessionI tried hyperbaric last week and I had the worst flare this year yet from itIn context ↗ | Severe | |
| September 2021 | COVID reinfection; dropped to 20-30% of normalI was on my way to recovering around 70%, then got it again and back to 20-30% for 3 months nowIn context ↗ | Severe | |
| August 2022 | breathlessness slowly easingStill a big problem but getting slightly better !In context ↗ | Moderate | |
| January 2024 | breathlessness became manageable with Plavix, nebulised budesonide and oxygenPlavix helped me a lot here. Also started oxygen concentrator & nebulized budesonide. It’s gone from my worst symptom for 3 years to sorta manageable.In context ↗ | Mild | |
| October 2024 | noticed a difference on low-dose naltrexoneI noticed a difference at 1.5mg.In context ↗ | Mild | Low-dose naltrexone |
| August 2026 | still on Plavix for breathlessness; PEM and migraines ongoingPlavix for shortness of breathIn context ↗ | Mild |
Adverse events
- Niacin (vitamin B3)“my whole body went bright red like a tomato and it felt like my whole body was intensely burning - I jumped in the shower, and then went to the ER” In context ↗ Allergic reaction / anaphylaxis
- “Note I was tried on ics/laba inhaler in July but reacted terribly so out put back on ics” In context ↗ Side effects
- Steroid inhalers (inhaled corticosteroids)“this happened exactly 2 weeks ago after trying a new inhaler (dulera), But this was full on hives and the burning was not so bad” In context ↗ Allergic reaction / anaphylaxis
- Steroid inhalers (inhaled corticosteroids)“I got one after 9 months and they found esophageal thrush - likely from my high inhaler dose” In context ↗ Side effects
- Steroid inhalers (inhaled corticosteroids)“a Long Covid Longhauler (15 months) who has apparently developed a Secondary Adrenal Insufficiency from being on inhaled steroids” In context ↗ Side effects
- Hydrocortisone / cortisol“(As I did not respond well to a trial of Hydrocortisone)” In context ↗ Side effects
- Hyperbaric oxygen (HBOT)“I recently did a soft chamber one from advice from others and it’s thrown me into a severe crash” In context ↗ Made symptoms worse
- Tiotropium (Spiriva)“I had bad reaction to 3 and could never tolerate - always made me worse, including spiriva” In context ↗ Made symptoms worse
Symptoms mentioned
BreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Breathlessness
It’s gone from my worst symptom for 3 years to sorta manageable
In context ↗ - Heart symptoms & palpitations
sob/chest pain is the worst
In context ↗ - POTS & dysautonomia
Autonomic dysfunction consistent with POTS
In context ↗ - Post-exertional malaise
Now gotta figure out the pem & migraines.
In context ↗ - Muscle weakness
profound weakness and fatigue
In context ↗ - Gut problems
trying to heal my gut through a functional medicine doctor
In context ↗ - Sleep problems
Note during this crash my sleep has been hell.
In context ↗ - Light & noise sensitivity
light sensitivity and brain fog
In context ↗ - Neuropathy & tingling
peripheral neuropathy
In context ↗ - Mast cell (MCAS) & allergies
my whole body went bright red like a tomato
In context ↗
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