ME/CFS
Moderate → much betterIll 6 years before improving or writingNeeds ongoing treatment
ME/CFS, brain fog and POTS after COVID; much better, credits naltrexone, aripiprazole
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 6 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I developed ME/CFS from a March 2020 COVID infection and am doing much better after various treatments.
In context ↗ - At worst: Moderate
In the beginning I couldn’t think, sit-up all day, or try physical activity. I would trigger PEM from daily life.
In context ↗ - Now: Much better
I'm better but not fully recovered - I can work full time, but don't have enough energy to exercise too and often go to bed early.
In context ↗ - Began after: COVID
I started coughing a bit on March 5th, 2020.
In context ↗ - Says they never had: Neuropathy & tingling
I never had nerve pain.
Read from 950 of their posts and comments; links to the 70 this page draws on
- May 2026
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Summary
COVID in March 2020 led to ME/CFS, brain fog, POTS and fatigue; they worked lying down and could not watch TV. A methylprednisolone taper helped night sweats and sound sensitivity, while aripiprazole, low-dose naltrexone and oral ketotifen cleared the brain fog; maraviroc, pravastatin, a blood thinner and ivermectin improved fatigue and POTS until a probable January 2022 reinfection. That reinfection made fatigue and PEM worse and brought POTS back; those gains have not returned. After 28 months they work, but less than before, and still get PEM and cannot exercise.
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What they tried
What they credit
aripiprazole· Helped a lot · mainmaraviroc· Helped a lot · main · wore offpravastatin/atorvastatin· Helped a lot · main · wore offpravastatin/atorvastatin· Helped a lot · main · wore offcyclosporine· Helped a lotoxaloacetate· Helped a lot · maintriple anticoagulant therapy· Helped a lot · mainpacing· Helpedmethylprednisolone taper· Helpedstellate ganglion block· Helped
Also tried
Mestinon· HelpedD-ribose· Helped · wore offpropionyl L-carnitine· HelpedNAC· Helpedvitamin D3· Helpedlow dose naltrexone· No changeoral ketotifen fumarate· No changecromolyn sodium· No changeivermectin· No changeaspirin· No changeclopidogrel· No changefluvoxamine· No changefamciclovir· No changeNexavir· No changelow inflammation diet· No changeTollovid· No changeautologous mesenchymal stem cell transplant· No changeL-arginine· No changevitamin C· No changeprobiotic· No changerhodiola rosea· No changecholine bitartrate· No changeLOLA· No changemalic acid· No changepycnogenol· No changenattokinase· No changerapamycin· No changehydroxychloroquine· No changeminocycline· No changecelecoxib· No changePaxlovid· No changeNAD+ injections· No changeCoQ10/ubiquinol· No changeVascepa· No changecaffeine elimination· No changePDE5 inhibitors· No changeantifungals· No changeantiparasitics· No changebicycle riding· Much worsefenofibrate· Not saidprednisone· Not saidcalcium· Not saidmagnesium· Not saidL-glutamine· Not saidmirica· Not saidDHEA· Not saidliothyronine· Not saidiron supplementation· Not saidCOVID vaccination as treatment· Not saidGabapentin (Neurontin)· Not said
Their words about each treatment
- bicycle riding · Much worse
I never recovered from bicycling two hours at a four hour pace on June 20th, 2020.
In context ↗ - pacing · Helped
Pacing - crashes suck
In context ↗ - methylprednisolone taper · Helped
A methylprednisolone taper improved my brain fog
In context ↗ - aripiprazole · Helped a lot
2mg daily virtually eliminated my brain fog.
In context ↗ - low dose naltrexone · No change
I didn't notice any positive or negative effects, but keep taking it
In context ↗ - oral ketotifen fumarate · No change
stopped ketotifen because I don’t seem to have mast cell activation
In context ↗ - cromolyn sodium · No change
cromolyn sodium 200mg q.i.d.
In context ↗ - Mestinon · Helped
Pyridostigmine gives me more time vertical
In context ↗ - maraviroc · Helped a lot
Maraviroc plus pravastatin significantly improved my fatigue and POTS
In context ↗ - ivermectin · No change
Unfortunately, ivermectin did not.
In context ↗ - aspirin · No change
Nattokinase, clopidogrel, and aspirin alone did nothing noticeable.
In context ↗ - clopidogrel · No change
Clopidogrel alone did nothing for me.
In context ↗ - fenofibrate · Not said
then substituted fenofibrate plus plavix
In context ↗ - prednisone · Not said
She tried prednisone.
In context ↗ - fluvoxamine · No change
No obvious effect for me.
In context ↗ - cyclosporine · Helped a lot
cyclosporine greatly reduced my fatigue, although staying on it seemed imprudent.
In context ↗ - famciclovir · No change
Famciclovir didn’t help me.
In context ↗ - Nexavir · No change
I tried famciclovir and nexavir with no results.
In context ↗ - D-ribose · Helped
5g three times a day slightly decreased my fatigue.
In context ↗ - propionyl L-carnitine · Helped
Propionyl l carnitine and NAC help a little.
In context ↗ - NAC · Helped
1000mg twice a day reduces my fatigue a little.
In context ↗ - oxaloacetate · Helped a lot
1000mg of oxaloacetate twice a day significantly improves my fatigue.
In context ↗ - low inflammation diet · No change
A low inflammation diet which doesn't do anything for me
In context ↗ - Tollovid · No change
Tollovid without results
In context ↗ - autologous mesenchymal stem cell transplant · No change
it did nothing for me.
In context ↗ - L-arginine · No change
1000mg of L-arginine plus 1000 mg of vitamin C as ascorbic acid daily do nothing noticeable
In context ↗ - vitamin C · No change
No apparent benefit either
In context ↗ - calcium · Not said
calcium 1g q.d.
In context ↗ - magnesium · Not said
magnesium 500mg q.d.
In context ↗ - L-glutamine · Not said
l-glutamine 1000mg b.i.d.
In context ↗ - mirica · Not said
mirica 1 cap b.i.d.
In context ↗ - probiotic · No change
probiotics which don't seem to do anything
In context ↗ - rhodiola rosea · No change
1000mg daily after breakfast didn't do anything for me
In context ↗ - vitamin D3 · Helped
My vitamin D levels are extremely low without supplementation.
In context ↗ - choline bitartrate · No change
I take choline bitartrate per my doctors advice.
In context ↗ - LOLA · No change
Yes. Did nothing for me.
In context ↗ - malic acid · No change
Malic acid did not.
In context ↗ - DHEA · Not said
probably got some benefit from thyroid medication (my reverse T3 was high) and DHEA (mine was low) too
In context ↗ - pycnogenol · No change
I’ve been taking pycnogenol for months following my doctor’s instructions but haven’t noticed a difference.
In context ↗ - nattokinase · No change
6000 fu twice a day hasn't done anything noticeable for me
In context ↗ - rapamycin · No change
7-10mg once a week didn't do anything positive or negative to me.
In context ↗ - hydroxychloroquine · No change
I haven't noticed any improvements or side effects
In context ↗ - minocycline · No change
Yes. Didn’t do anything for me.
In context ↗ - celecoxib · No change
I tried celebrex, minocycline, and famciclovir with no effect.
In context ↗ - Paxlovid · No change
10 days didn't do anything for me.
In context ↗ - triple anticoagulant therapy · Helped a lot
Eliquis, clopidogrel, and aspirin improved my fatigue further and seems to have eliminated my POTS/orthostatic intolerance
In context ↗ - stellate ganglion block · Helped
Dr. Liu’s new technique reduced my fatigue.
In context ↗ - NAD+ injections · No change
Oral NADH and injected NAD+ did nothing for me.
In context ↗ - CoQ10/ubiquinol · No change
CoQ10 and Ubiquinol did nothing noticeable for me.
In context ↗ - Vascepa · No change
4g of Vascepa daily did nothing for me.
In context ↗ - caffeine elimination · No change
I quit caffeine hoping it would improve my symptoms. Unfortunately it did not.
In context ↗ - PDE5 inhibitors · No change
experiments with sildenafil and tadalafil which did not improve things
In context ↗ - antifungals · No change
treated ... fungus with no apparent effect
- antiparasitics · No change
treatment for Entamoeba histolytica they found in my stool
In context ↗ - iron supplementation · Not said
ferritin was low too until I started iron supplementation
In context ↗ - COVID vaccination as treatment · Not said
At the time it gave me a sore arm and increased my fatigue for a day.
In context ↗ - Gabapentin (Neurontin) · Not said
It really sedated me when I broke my leg and stretched a nerve.
In context ↗
Approaches: Anticoagulants · Antivirals · Immunomodulators · Other drugs and medicines · Pacing · Statins · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2020-03-05 | COVID-19 infection: cough, then headache, brain fog, sound sensitivityI started coughing a bit on March 5th, 2020.In context ↗ | Mild | |
| 2020-06-20 | crashed after a two-hour bike ride and never fully recoveredWithin 48 hours I felt much worse, had no energy, and couldn't get my heart rate up.In context ↗ | Moderate | |
| 2020 | working from bed, napping between meetings, could not follow TVI couldn't sit up for a whole workday and had to lay down / nap frequently due to lack of energy.In context ↗ | Moderate | |
| Fall 2020 | brain fog cleared after methylprednisolone taper, aripiprazole and LDNAfter six months aripiprazole and low dose naltrexone virtually eliminated my brain fog.In context ↗ | Moderate | Low-dose Abilify / aripiprazole |
| Fall 2021 | fatigue improved on Patterson protocol drugsimproved my fatigue some with treatment according to Dr. Bruce Patterson's protocols from August through October 2021In context ↗ | Moderate | Maraviroc (Selzentry) |
| 2022-01-15 | probable Omicron reinfection; fatigue worse and POTS backIt erased most of the improvements in my fatigue, and temporarily made my POTS worse.In context ↗ | Moderate | |
| 2022-11 | some days making it to dinner without lying downSince starting oxaloacetate, DHEA (mine is low), and liothyronine (my reverse T3 is high) I have days when I make it to dinner without laying down.In context ↗ | Mild | Oxaloacetate |
| 2023-08 | triple anticoagulant therapy reduced fatigue and POTSMy fatigue decreased after 6-8 weeks of treatment which I started when my health had plateauedIn context ↗ | Mild | Triple anticoagulant therapy |
| 2025-01 | stellate ganglion block (Dr. Liu technique) left energy after workA bilateral stellate ganglion block using Dr. Liu's latest technique seems to have improved my fatigue further - for the last week I've had energy left after getting home from workIn context ↗ | Mild | Stellate ganglion block |
| 2026-09 | working full time with three office days, walking at weekends, light cyclingMild. I can work and socialize on weekends.In context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“At the time it gave me a sore arm and increased my fatigue for a day.” In context ↗ Side effects
- “The second Shingrix shot made my fatigue and muscle aches worse for two days, but had no lasting effects.” In context ↗ Made symptoms worse
- Paxlovid / nirmatrelvir“Only a bad metalic taste in my mouth which Altoid peppermints helped with.” In context ↗ Side effects
- Gabapentin (Neurontin)“It really sedated me when I broke my leg and stretched a nerve.” In context ↗ Side effects
- Triple anticoagulant therapy“Slight iron deficiency anemia from GI bleeding for a few months, bruising more readily, and not clotting as quickly from minor cuts.” In context ↗ Blood count problems
Symptoms mentioned
Brain fogBreathlessnessHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I still get PEM but it takes more to do it.
In context ↗ - Brain fog
My brain fog virtually disappeared after I started low dose naltrexone and aripiprazole.
In context ↗ - POTS & dysautonomia
My POTS finally disappeared.
In context ↗ - Headaches & migraine
I still have a headache and sore muscles.
In context ↗ - Pain & fibromyalgia
My legs always feel like I bicycled 200 miles yesterday except when they're worse.
In context ↗ - Sleep problems
Since March, 2020 I've had a constant headache and never woken up rested.
In context ↗ - Light & noise sensitivity
A one time methyl prednisolone taper eliminated my night sweats and sound sensitivity.
In context ↗ - Breathlessness
I resumed exercise after my shortness of breath cleared
In context ↗ - Heart symptoms & palpitations
stopping only when I had heart rate anomalies with chest pain
In context ↗
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