Long COVID
Very severe → much betterIll 4 years before improving or writingNeeds ongoing treatment
Bedbound for months with long COVID, now much better with aggressive rest and acupuncture
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
I've had LC since July 22 infection.
In context ↗ - At worst: Very severe
I was completely bedbound at my worst for months. I couldn't tolerate a sitting shower and couldn't barely walk.
In context ↗ - Now: Much better
Went from severe to moderate and found major dysbiosis along the way so working on that now.
In context ↗ - Began after: COVID
I(55m) caught covid in July '22.
Read from 123 of their posts and comments; links to the 46 this page draws on
- Oct 2026
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Summary
A man in South Jersey got long COVID in July 2022 and had a worsening course with fatigue, PEM, brain fog, MCAS-like symptoms and anxiety, though he recovered to about 70% before three IVIG infusions in early 2025 left him bedbound for months. From late 2025 he credited aggressive rest, acupuncture, Chinese herbs, somatic therapy and vagal work, with PEM improving from severe to moderate by late 2025 and able to shower and walk short distances.
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What they tried
What they credit
brain retraining· Helped a lotTCM (Traditional Chinese Medicine)· Helped a lot · mainaggressive rest· Helped a lot · mainPhosphatidylcholine· Helped a lotEMDR· Helpedzinc carnosine· HelpedCreatine· HelpedLongvida Curcumin· HelpedMagnesium Taurate· HelpedTaurine· Helpedelectrolytes· Helpedsalt tablets· Helpedbuffered C· HelpedQuercetin w/Bromelain· HelpedS-acetyl-l-glutathione· HelpedOmegas· HelpedUbiquinol· HelpedB-Complex· HelpedD3/K2· Helpedsomatic therapy· HelpedCurable· Helpedvagus nerve stimulator· Helpedvagal breathing exercises· Helpedtime· Helpedcounting calories· HelpedResveratrol· Helpedred light therapy· HelpedAllegra· HelpedALA· HelpedS. boulardii· Helpedserum bovine immunoglobulin· HelpedLiposomal Glutathione· Helpedgood sleep· Helped
Also tried
SPM Active (pro-resolving mediators)· Helped a lotXanax· HelpedKPV· HelpedMelatonin· Helpedprotein shakes and MetRx bars· HelpedCDP choline· HelpedPepcid· Helpeddiet lower in refined carbs· Helpedfasting for colonoscopy prep· Helped · wore offLuteolin· Helpedwalking and mild leg exercises· Helpedmagnesium glycinate· No changelemon balm· No changel-theanine· No changeAshwagandha· No changeCBD· No changeCBT· No changeLexapro· WorseFlonase· WorseLumbrokinase· WorseNAC· Worseacupuncture (earlier practitioner)· WorsePQQ· Worseserotonin· Worsepregnenolone· WorseIVIG· Much worsePHGG· Not saidMonolaurin· Not saidLicorice Root· Not saidLysine· Not saidOlive Leaf Extract· Not saidallicin· Not saidLiver support supplement· Not saidmeditation· Not saidprayer· Not saidcharcoal· Not saidlow fat diet· Not saidDGL· Not saidslippery elm· Not saidaloe vera· Not saidAcacia prebiotic fiber· Not saidEsomeprazole (Nexium)· Not said
Their words about each treatment
- Lexapro · Worse
Since LC, I feel like it just stopped working, and I get all the sides.
In context ↗ - magnesium glycinate · No change
Nothing worked. It just mildly lowered the volume.
In context ↗ - Flonase · Worse
Messed me up worse. Was on it for months and started having truly nightmarish sides.
In context ↗ - IVIG · Much worse
My 3rd dose felt like someone injected concentrated long covid in my veins.
In context ↗ - Xanax · Helped
The first time I took .25mg of xanax, I felt so much relief.
In context ↗ - CBT · No change
Started with CBT, which did nothing for me.
In context ↗ - EMDR · Helped
EMDR helped a lot but was rough during therapy.
In context ↗ - Lumbrokinase · Worse
I have this now and just realized it's the lumbrokinase. How long did it take to go away?
In context ↗ - NAC · Worse
I've been trying NAC alone but it made me worse.
In context ↗ - KPV · Helped
There are no dramatic shifts yet, but I am seeing fewer flares and less severity of flares.
In context ↗ - PHGG · Not said
I just got PHGG last week
In context ↗ - zinc carnosine · Helped
some definate helpers have been; ... Zinc Carnosine
In context ↗ - SPM Active (pro-resolving mediators) · Helped a lot
SPM Active and Longvida Curcumin have had the biggest impact on my inflammation.
In context ↗ - Creatine · Helped
Creatine has helped muscle soreness and energy some.
In context ↗ - Magnesium Taurate · Helped
Magnesium Taurate and Taurine are my mainstays.
In context ↗ - electrolytes · Helped
If I had to rank what's helped me the most ... Electrolytes
In context ↗ - salt tablets · Helped
salt tablets really seem to help the leg pain.
In context ↗ - Monolaurin · Not said
For active ebv control, I took Monolaurin and Licorice Root
In context ↗ - Lysine · Not said
1 gram of Lysine 2x day
In context ↗ - Olive Leaf Extract · Not said
1 gram of Olive Leaf Extract 2x day
In context ↗ - allicin · Not said
11mg allicin 2x day
In context ↗ - buffered C · Helped
some definate helpers have been; ... Buffered C
In context ↗ - Quercetin w/Bromelain · Helped
Things in my stack that are supportive for mito are Resveratrol, Ubiquinol, mild B complex,Taurine, Creatine, and Quecertin with bromelain, and red light therapy.
In context ↗ - S-acetyl-l-glutathione · Helped
S-acetyl-l-glutathione 100mg 2x daily
In context ↗ - Omegas · Helped
pro-resolving mediators, a good omega 3, and 2 grams of vit c a day is working for me
In context ↗ - B-Complex · Helped
some definate helpers have been; ... B complex
In context ↗ - D3/K2 · Helped
some definate helpers have been; ... D3/K2
In context ↗ - Liver support supplement · Not said
Liver support supplement
In context ↗ - Melatonin · Helped
Melatonin and Inositol for sleep.
In context ↗ - brain retraining · Helped a lot
Brain retraining is the only thing that got me out of severe PEM.
In context ↗ - somatic therapy · Helped
somatic therapy is another tool I use that has been crucial for getting me from "I can't" to "I can".
In context ↗ - Curable · Helped
Curable was actually really good. I only did the free 6 weeks, but even that moved the needle.
In context ↗ - TCM (Traditional Chinese Medicine) · Helped a lot
The biggest change I made was starting TCM about 3 months ago.
In context ↗ - acupuncture (earlier practitioner) · Worse
I tried an accupuncturist, and he made me worse.
In context ↗ - vagus nerve stimulator · Helped
Both seem to help, but I can feel the Xen settle things when it's rough.
In context ↗ - vagal breathing exercises · Helped
I do breathing exercises. One thing that helps me is deep slow inhales, then a loud deep sigh on exhale.
In context ↗ - aggressive rest · Helped a lot
For me, aggressive resting was the biggest factor.
In context ↗ - time · Helped
If I had to rank what's helped me the most ... Time
In context ↗ - meditation · Not said
I also practice radical rest, meditate, practice somatic therapy, and prayer.
In context ↗ - counting calories · Helped
Stopping the crashes was key for me.
In context ↗ - protein shakes and MetRx bars · Helped
Protein shakes and MetRx bars helped me a lot.
In context ↗ - PQQ · Worse
PQQ is good for mito biogenesis, but it was too stimulating for me.
In context ↗ - CDP choline · Helped
A supplement that helps mine is cdp choline.
In context ↗ - Resveratrol · Helped
some definate helpers have been; ... Resveratrol
In context ↗ - Allegra · Helped
Allegra and Pepcid. I no longer need them, but they were very helpful.
In context ↗ - Phosphatidylcholine · Helped a lot
The more immediate effect(days) was brain fog has gone from moderate-severe to mild.
In context ↗ - ALA · Helped
Outside of that, ALA and Longvida Curcumin.
In context ↗ - diet lower in refined carbs · Helped
I started changing my diet to lower refined carbs, taking SPMs with Omega 3, and my inflamation markers are now normal or very close to it.
In context ↗ - fasting for colonoscopy prep · Helped
I had to basically fast for a few days earlier in the year for a colonscopy prep. I felt so much better, almost normal, the day of and day after.
In context ↗ - serotonin · Worse
I tried raising my seratonin and pregnenalone because both were very low. That was a major backfire.
In context ↗ - S. boulardii · Helped
S. Boullardi and serum bovine immunoglobulin right now. Those help neutralize lps in gut
In context ↗ - serum bovine immunoglobulin · Helped
Those help neutralize lps in gut and help lower the overgrowths and heal leaky gut.
In context ↗ - charcoal · Not said
I also use charcoal intermittently.
In context ↗ - Liposomal Glutathione · Helped
Liposomal Glutathione helps body clear the toxins that leak into bloodstream.
In context ↗ - Luteolin · Helped
Luteolin really helps me, too.
In context ↗ - low fat diet · Not said
So, I eat a low fat diet to try and limit the damage.
In context ↗ - DGL · Not said
For the gut, I take a PHGG and Acacia prebiotic fiber, zinc carnosine, DGL, slippery elm, and aloe vera.
In context ↗ - Acacia prebiotic fiber · Not said
For the gut, I take a PHGG and Acacia prebiotic fiber
In context ↗ - walking and mild leg exercises · Helped
I can now walk again, and I now realize that walking is helping my leg symptoms go away.
In context ↗ - good sleep · Helped
I noticed my biggest changes after fixing my insomnia and starting TCM and SPMs
In context ↗ - Esomeprazole (Nexium) · Not said
I refused due to a past reaction to Nexium.
In context ↗
Approaches: H1 antihistamines · POTS medication · Alternative therapies · Amino acids and carnitine · Brain retraining · Diet · Mind-body practices · Radical rest · Supplements · Trauma & somatic work · Vagus nerve stimulation
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 |
|---|---|---|
| July 2022 | COVID infection; stress tolerance dropped, sense of reality off, internal weaknessI(55m) caught covid in July '22. By late August, I knew something was up. My stress tolerance dropped.In context ↗ | Mild |
| mid-2023 | progression: fatigue, PEM, shaking, buzzing and anxiety worse; more breaks at his desk jobAfter a year, it progressed to fatigue and PEM and my shakes, buzzing, and anxiety got worse. I needed more breaks during my wfh desk job.In context ↗ | Mild |
| June 2024 | EBV reactivation; ER visit; really bad shape for a few monthsFast forward to June 2024, woke one day with debilitating fatgue, heaviness, and panic. Went to ER. They found EBV reactivation.In context ↗ | Moderate |
| late February 2025 | about 70% recovered overall after recovering from the EBV reactivationBy late Feb 2025 I was probably 70% recovered from everything, not just EBV.In context ↗ | Mild |
| May 2025 | complete crash after third IVIG infusion; ER and hospital stay, bedbound, could not eat or care for himselfI was completely bedbound at my worst for months. I couldn't tolerate a sitting shower and couldn't barely walk.In context ↗ | Very severe |
| October 2025 | started TCM with weekly acupuncture and herbs plus aggressive rest; slow, noticeable improvement beganStarted TCM in October. Since then, I've been slowly but noticeably improving.In context ↗ | Severe |
| February 2026 | shovelled snow and ran the snow blower for over an hour with only soreness and mild day-2 PEMI had no choice but to shovel and run the snow blower for over an hour. ... I'm just sore, tired, and my nervous system is a bit shakey.In context ↗ | Moderate |
| August 2026 | returned to some remote work and began having short windows of near normalI even started working(remote) some hours again. And recently, I've started experiencing windows of near normal.In context ↗ | Moderate |
| October 2026 | improved from severe to moderate; gut dysbiosis being treatedYes and doing much better. Went from severe to moderate and found major dysbiosis along the way so working on that now.In context ↗ | Moderate |
Adverse events
- Fluticasone nasal spray (Flonase, Avamys)“Messed me up worse. Was on it for months and started having truly nightmarish sides. Quitting was almost as bad after long-term use, for me.” In context ↗ Side effects
- Fluticasone nasal spray (Flonase, Avamys)“Quitting was almost as bad after long-term use, for me.” In context ↗ Withdrawal problems
- IVIG / subcutaneous Ig“The first dose prompted pretty strong reactions all over my body, which my nurse and support group say is a good sign.” In context ↗ Side effects
- Lumbrokinase“I have this now and just realized it's the lumbrokinase. How long did it take to go away?” In context ↗ Side effects
- IVIG / subcutaneous Ig“IVIG made me far worse” In context ↗ Made symptoms worse
- IVIG / subcutaneous Ig“After my 2nd dose, I developed weakness and twitching in my legs and more intense fog.” In context ↗ Side effects
- IVIG / subcutaneous Ig“My 3rd dose felt like someone injected concentrated long covid in my veins. I got all of the symptoms in a massive prolonged flare.” In context ↗ Made symptoms worse
- IVIG / subcutaneous Ig“Was in ER 10 days later.” In context ↗ ER visit
- IVIG / subcutaneous Ig“The suffering had me begging God to take me in my sleep. I didn't want to wake up to face another day of severe suffering.” In context ↗ Suicidal thoughts or attempt
- IVIG / subcutaneous Ig“It worked for me after the 1st infusion, but the next 2 infusions crashed me out and made all my lc symptoms come roaring back.” In context ↗ Made symptoms worse
- IVIG / subcutaneous Ig“I had the lower dose used in trial, and by the 3rd dose, I went from 70% to 5%.” In context ↗ Made symptoms worse
- IVIG / subcutaneous Ig“And I could barely eat for a couple of months so I lost a lot of weight.” In context ↗ Other
- Alprazolam (Xanax)“At my worst, I tried .25mg xanax which I thought was helping but gave me terrible rebound anxiety, so I stopped.” In context ↗ Withdrawal problems
- Escitalopram (Lexapro)“Since LC, I feel like it just stopped working, and I get all the sides.” In context ↗ Side effects
- PQQ (pyrroloquinoline quinone)“PQQ is good for mito biogenesis, but it was too stimulating for me.” In context ↗ Side effects
- NAC (N-acetylcysteine)“I've been trying NAC alone but it made me worse.” In context ↗ Made symptoms worse
- KPV“I think the KPV caused some sort of herx-like reaction, so I just started again at a microdose and am working my way up.” In context ↗ Herx / die-off reaction
- Acupuncture“I tried an accupuncturist, and he made me worse.” In context ↗ Made symptoms worse
- Esomeprazole (Nexium)“I refused due to a past reaction to Nexium.” In context ↗ Side effects
- Pregnenolone“A long while back, before I learned more, I tried raising my seratonin and pregnenalone because both were very low. That was a major backfire.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
my PEM went from severe to moderate
In context ↗ - Brain fog
my severe brain fog is now mostly mild
In context ↗ - POTS & dysautonomia
My dysautonomia was off the charts, neuro issues with swvere brain fog
In context ↗ - Mast cell (MCAS) & allergies
It hasn't helped with my inflamation or mcas symptoms
In context ↗ - Sleep problems
My insomnia was really bad, but now I get 8 hours most nights.
In context ↗ - Pain & fibromyalgia
Muscles hurt so bad I couldn't sleep, especially calves and thighs.
In context ↗ - Gut problems
My gut is very messed up, so I know it's going to take time.
In context ↗ - Light & noise sensitivity
I had light and sound sensitivity that was really bad.
In context ↗ - Heart symptoms & palpitations
The progressing flutters and buzzing, I've had for years, is going away.
In context ↗ - Muscle weakness
Suddenly my limbs were very weak and my brain fog was a crippling 24/7 brain fog.
In context ↗ - Neuropathy & tingling
My instense muscle twitches have become mild and rare.
In context ↗ - Anxiety & low mood
my chronic panic state is now episodic rather than 24x7
In context ↗ - Flu-like symptoms
That PEM flu is just brutal. I still get it but less intense and doesn't last as long.
In context ↗
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