Long COVID
Severe → no benefitIll for 6 yearsNeeds ongoing treatment
Mostly bedridden and on oxygen with long COVID, no improvement after many treatments
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 6 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
it’s been hell since late 2020/early 2021.
In context ↗ - At worst: Severe
Bed ridden mostly but have to get up for some thing now and again.
In context ↗ - Now: No benefit
I’m still destroyed myself. ... And this is 100% killing me.
- Began after: COVID
I pushed hard in the gym through and after, and now I’m being destroyed 2 years later.
In context ↗
Read from 30 of their posts and comments; links to the 21 this page draws on
Summary
After long COVID began around late 2020/early 2021, they declined into dysautonomia, small-fibre neuropathy, poor perfusion and muscle wasting, becoming mostly bedridden and dependent on oxygen. They tried IVIG, stem cells, ozone, many supplements, LDN, an MCAS protocol, steroids, Klonopin, ivermectin, nicotine patches and a stellate ganglion block. Klonopin, steroids, IV ozone, high-dose IV vitamin C, EBOO and NSAIDs gave modest or partial help; their decline continued.
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What they tried
Also tried
Klonopin· HelpedTHC/CBD gummy· HelpedIndomethacin / NSAIDs· Helpedoxygen· Helpedsteroids / prednisone· Helped · wore offhigh dose IV Vitamin C· HelpedIV Ozone· HelpedEBOO· Helpedsmelling salts· Helpedwarm showers / steam heat· HelpedIVIG· No changeMethylene Blue· No changehigh volume fluids and electrolytes· No changefludrocortisone· No changeDroxidopa· No changeSGB· No changeacupuncture· No changenicotine patches· No changePentoxifylline· No changeQuercetin· No changeoral Vit C· No changemagnesium· No changeLumbrokinase· No changeNattokinase· No changeBromelain· No changecurcumin· No changeLDN· No changeIvermectin· No changeTedalafil (tadalafil)· No changeCitruline and Arginine· No changeGuanfacine· No changeKetotifen· No changeantidepressants· WorseRLT (red light therapy)· Worsegym exercise and rehab attempts· Much worsecolonoscopy preparation ‘clearing’· Much worseExosomes and stem cells· Not saidExosomes and stem cells· Not saidHesperidin· Not saidHorse Chestnut· Not saidButcher’s Broom· Not saidL-Lysine· Not saidMonolaurin· Not saidNAC / Glutathione· Not saidNAC / Glutathione· Not saidmethyl-B12 shots· Not saidantihistamines· Not said
Their words about each treatment
- gym exercise and rehab attempts · Much worse
I pushed hard in the gym through and after, and now I’m being destroyed 2 years later.
In context ↗ - antidepressants · Worse
I tried antidepressants and they all tanked me.
In context ↗ - IVIG · No change
IVIG doesn’t do enough.
In context ↗ - Exosomes and stem cells · Not said
IVIG, Exosomes and stem cells, also.
In context ↗ - Methylene Blue · No change
And yes, I took Methylene Blue prior to the sessions.
In context ↗ - RLT (red light therapy) · Worse
RLT makes me worse
In context ↗ - Klonopin · Helped
Only thing that modestly helps with pain and dryness, stiffness is taking Kl*n*pin
In context ↗ - THC/CBD gummy · Helped
along with a THC/CBD gummy, and NSAID
In context ↗ - Indomethacin / NSAIDs · Helped
Klonopin and Indomethacin / NSAIDs are the only combo that seems to noticeably help SOME symptoms
In context ↗ - high volume fluids and electrolytes · No change
POTS with Orthostatic Hypotension (despite high volume fluids and electrolytes, even med trials)
In context ↗ - oxygen · Helped
Yes, I’m using 4 liters now…use it all the time now just to get near normal levels.
In context ↗ - fludrocortisone · No change
I trialed all of those volume and hormone associated regulation meds, including fludrocortisone. They didn’t help
In context ↗ - Droxidopa · No change
The last one I was trialed on was Droxidopa. And it also seemed to not help, so much as give some random and unhealthy BPs.
In context ↗ - steroids / prednisone · Helped
I have gotten modest relief after a 125mg methyl prednisone push…but only for a few days.
In context ↗ - SGB · No change
I’ve done SGB before and it didn’t do anything.
In context ↗ - acupuncture · No change
I l tried acupuncture several times and it unfortunately didn’t do the trick.
In context ↗ - nicotine patches · No change
I also tried the nicotine patches and didn’t notice a measurable difference.
In context ↗ - Pentoxifylline · No change
I take it now (Pentoxifyline)…no noticed benefit thus far
In context ↗ - high dose IV Vitamin C · Helped
Only benefits I’ve ever seen—after trying nearly everything—is high dose IV Vitamin C, IV Ozone, EBOO, Prednisone, Klonopin.
In context ↗ - IV Ozone · Helped
The only things that have given any modest help are IV Ozone and the occasional klonopin
In context ↗ - Quercetin · No change
I’m doing a full spectrum MCAS protocol now and hoping my Quercetin and oral Vit C, as well as magnesium…and some other things.
In context ↗ - Lumbrokinase · No change
I’ve trialed Lumbrokinase, Nattokinase, Bromelain, curcumin, Tedalafil, Pentoxyfyline, Citruline and Arginine, etc.
In context ↗ - Hesperidin · Not said
I also take Lumbrokinase, Nattokinase, Hesperidin, Bromelain, Curcumin, Horse Chestnut, Butcher’s Broom
In context ↗ - Horse Chestnut · Not said
Curcumin, Horse Chestnut, Butcher’s Broom…Methylene Blue (occasionally), LDN, L-Lysine, Monolaurin, NAC / Glutathione
In context ↗ - LDN · No change
All with fludrocortisone, Guanfacine, LDN, Ketotifen, Quercetin, Vit C, Methylene Blue, and more.
In context ↗ - L-Lysine · Not said
Methylene Blue (occasionally), LDN, L-Lysine, Monolaurin, NAC / Glutathione
In context ↗ - methyl-B12 shots · Not said
also, methyl-B12 shots every few days
In context ↗ - Ivermectin · No change
I trialed Ivermectin and did a SGB, to no avail.
In context ↗ - smelling salts · Helped
I can breathe a little easier from smelling salts.
In context ↗ - colonoscopy preparation ‘clearing’ · Much worse
my health severely declined with all of these many horrible conditions after an aggressive ‘clearing’ for a colonoscopy
In context ↗ - warm showers / steam heat · Helped
steam heat from warm showers helps give some relief to the pressure
In context ↗ - antihistamines · Not said
He recommended antihistamines—which I’ve already done every variation.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| late 2020/early 2021 | long COVID began after a COVID infection; still exercisingI pushed hard in the gym through and afterIn context ↗ | |
| July 2022 | unable to walk or sit up, dysautonomia and gastroparesisI mean straight up dying, unable to walk or sit up…full on dysautonomia and gastroparesisIn context ↗ | |
| — | severe decline after colonoscopy bowel prepmy health severely declined with all of these many horrible conditions after an aggressive ‘clearing’ for a colonoscopyIn context ↗ | |
| July 2025 | modest relief of some symptomsOnly benefits I’ve ever seen—after trying nearly everything—is high dose IV Vitamin C, IV Ozone, EBOO, Prednisone, Klonopin.In context ↗ | Clonazepam (Klonopin) |
| October 2026 | still destroyed, losing sensation and blood flow, decliningBed ridden mostly but have to get up for some thing now and again. ... I can’t feel many parts of my body anymore |
Adverse events
- Antidepressants (unspecified)“I tried antidepressants and they all tanked me.” In context ↗ Made symptoms worse
- Red and near-infrared light therapy“RLT makes me worse (drives nerve inflammation and dries me worse…I have a kind of systemic Sjogren’s like aspect).” In context ↗ Made symptoms worse
- Everyday exercise and activity“I have tried using a rowing machine and many different rehab avenues but it definitely seems to make things worse.” In context ↗ Made symptoms worse
- Droxidopa (Northera)“The last one I was trialed on was Droxidopa. And it also seemed to not help, so much as give some random and unhealthy BPs.” In context ↗ Side effects
- “my health severely declined with all of these many horrible conditions after an aggressive ‘clearing’ for a colonoscopy.” In context ↗ Made symptoms worse
- Red and near-infrared light therapy“Didn’t help me, unfortunately…actually makes some symptoms flare after use. And worsens my dryness” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
I have tried using a rowing machine and many different rehab avenues but it definitely seems to make things worse.
In context ↗ - Brain fog
my short term memory, multitasking, planning, ability to notice time passage correctly, and more neuro issues are very bad
In context ↗ - POTS & dysautonomia
POTS with Orthostatic Hypotension (despite high volume fluids and electrolytes, even med trials)
In context ↗ - Sleep problems
bad cognitive issues, sleep issues, and circulation worsening
In context ↗ - Pain & fibromyalgia
joint pain and weakness (synovial fluid inflammation)
In context ↗ - Headaches & migraine
I have these symptoms and the head pressure.
In context ↗ - Gut problems
full on dysautonomia and gastroparesis
In context ↗ - Breathlessness
I have had progressive breathing issues that turned into exercise intolerance
In context ↗ - Heart symptoms & palpitations
Low BP + High HR with standing
In context ↗ - Muscle weakness
hanging head with tremendous neck weakness
In context ↗ - Neuropathy & tingling
severe neuropathy and damaged vacularity with poor perfusion
In context ↗ - Temperature regulation
areas of my body get ice cold but then hot
In context ↗ - Vision problems
BVD (Binocular Vision Dysfunction) for sure
In context ↗