Largely bedbound with ME/CFS, now somewhat better and housebound; LDN helped partly

Condition: ME/CFS
At worst: Severe (mostly bedbound)
Ill before improving or writing: 2 years
Last post: Oct 2026

In their words

Condition: ME/CFSthe specialist wrote “ME/CFS” on my assessment and said I wouldn’t recover In context ↗
At worst: SevereI went from being bedbound to housebound In context ↗
Now: Somewhat betterI’m better than I was at this time last year, thanks to a bunch of meds and red light therapy, but I’m still pretty housebound. In context ↗
Began after: COVIDI contracted covid for the first time on April 21 of this year.
Says they never had: Loss of smell or tasteThankfully, I didn’t lose my taste or sense of smell.
Says they never had: Mast cell (MCAS) & allergiesI don’t have MCAS or POTS, thankfully

Read from 254 of their posts and comments; links to the 43 this page draws on

Summary

After a first COVID infection in April 2023, Cardinal 69508 was largely bedbound with severe brain fog, PEM, fatigue and tinnitus. Low-dose naltrexone, nicotine patches and a Celebrex/Valtrex trial each helped partially; they also tried low-dose Abilify. By April 2025 they were still housebound, with brain fog reduced but recurring and PEM lessened.

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What they tried

What they credit

low-dose Abilify (LDA)· Helped a lot red light therapy / photobiomodulation (Shiftwave, Ammortal Chamber, Neuradiant 1070 helmet)· Helped a lot · main · wore off LDN (low-dose naltrexone)· Helped · main rest and pacing· Helped low-dose methylene blue· Helped

Also tried

nicotine patches· Helped a lot · wore off Celebrex (celecoxib)· Helped a lot · wore offShiftwave chair· Helped a lottinnitus tapping trick· Helped · wore offCymbalta· HelpedQuviviq (daridoxerant)· HelpedNovavax booster· No change Vitamin D (D2)· No change B12· No change Taurine· No change Valtrex· No change HRT (progesterone)· No change spine surgery· No change mestinon· Worse Vyvanse· Much worseThera Tears eye drops and Polysporin pink eye treatment· Not saidReactine (cetirizine)· Not said Synthroid· Not said iron supplementation· Not said TA-1 peptide· Not said

Their words about each treatment

LDN (low-dose naltrexone) · HelpedI’m on LDN (low-dose naltrexone) and it’s slowly helping the brain fog dissipate. In context ↗
rest and pacing · HelpedIt has slowly lessened since then, mostly due to LDN (low dose naltrexone) and major rest In context ↗
Thera Tears eye drops and Polysporin pink eye treatment · Not saidI use Thera Tears eye drops a few times a day, plus the Polysporin pink eye treatment (which stings). In context ↗
nicotine patches · Helped a lotIt cleared 75% of my brain fog in less than a week & it’s been the only thing that has helped. In context ↗
tinnitus tapping trick · HelpedA friend showed me this trick the other day and it works (temporarily). In context ↗
Novavax booster · No changeunfortunately, it did not impact my LC at all In context ↗
Vitamin D (D2) · No changeD2, B12, Taurine, and a handful of others haven’t helped. In context ↗
B12 · No changeThe only supplements I take are Vitamin D & B12 In context ↗
Reactine (cetirizine) · Not saidI took a Reactine 20 min before the shot. In context ↗
Cymbalta · HelpedCymbalta definitely helped with my nerve pain from a bulged disk. In context ↗
Synthroid · Not saidon top of my regular Cymbalta and Synthroid In context ↗
iron supplementation · Not saideven tho I’ve been supplementing for almost a year In context ↗
Celebrex (celecoxib) · Helped a lotMy GP agreed to the Celebrex and Valtrex trial (200mg & 500mg, twice a day) and this has taken 80% of my rather severe tinnitus away. In context ↗
Valtrex · No changeI’m not sure if the Valtrex did anything for me. In context ↗
Vyvanse · Much worseThe long covid doc prescribed Vyvanse as I’m already on LDN, and it made me suicidal. In context ↗
low-dose Abilify (LDA) · Helped a lotJust chiming in with successful LDA treatment. It’s made a huge difference in my energy levels and has decreased my PEM! In context ↗
mestinon · WorseI couldn’t take it for more than a couple of days due to the side-effects (major nausea) In context ↗
red light therapy / photobiomodulation (Shiftwave, Ammortal Chamber, Neuradiant 1070 helmet) · Helped a lotfour sessions later, I began to feel better. After 12 sessions, I felt like my old self again, pre-covid. In context ↗
Shiftwave chair · Helped a lotThe Shiftwave took away that poisoned feeling and completely regulated my nervous system. In context ↗
low-dose methylene blue · HelpedLow-dose methylene blue (5-15mg) paired with red light therapy has helped me more than any other supplement. In context ↗
HRT (progesterone) · No changeJust hit menopause and I’ve started HRT. Unfortunately, the progesterone hasn’t helped. In context ↗
Quviviq (daridoxerant) · HelpedI’ve been taking it 3-4 times a week for about six months. It’s great! Long covid insomnia is no joke! In context ↗
TA-1 peptide · Not saidI’m doing a trial of the TA-1 peptide to see if it will boost my immune system. In context ↗
spine surgery · No changeI had spine surgery 7 months into my long covid and it didn’t affect me one way or another. In context ↗

Approaches: Alternative therapies · Other drugs and medicines · Pacing

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
2023-04-21	first COVID infection; brain fog, fatigue and PEM within 48 hoursBrain fog, debilitating fatigue and PEM. Pretty much within 48 hours of exposure. In context ↗	Severe
2023	bedbound, too weak to lift an armI was unable to even lift my arm to wave goodbye to my kid, it was that bad In context ↗	Severe
2023-09-30	slow improvement of brain fog and inflammation, still houseboundIt has slowly lessened since then, mostly due to LDN (low dose naltrexone) and major rest In context ↗	Severe	Low-dose naltrexone
2023-10-26	brain fog roughly 75% cleared by nicotine patches, PEM still presentIt took my brain fog from coal-smoke, old-timey London to a fine mist so far. In context ↗	Moderate	Nicotine patches
2025-01-13	tinnitus halved and PEM lessening on Celebrex with Valtrexit’s taken my tinnitus away by at least half! ... as it seems to be lessening my PEM as well In context ↗	Moderate
2025-03-13	stopped Celebrex and Valtrex after four months; tinnitus returnedafter stopping both after 4 months, my tinnitus came back In context ↗	Moderate
2025-06-20	low-dose Abilify improved energy and cut PEMIt’s made a huge difference in my energy levels and has decreased my PEM! In context ↗	Moderate	Low-dose Abilify / aripiprazole
2025-06-24	crashed after overdoing it while feeling betterThough I overdid it this weekend and crashed as I felt better than I had in over 2 years. In context ↗	Moderate
2025-07-13	remission after twelve sessions of red light and photobiomodulation, walking normallyAfter 12 sessions, I felt like my old self again, pre-covid. In context ↗	Near normal	Red and near-infrared light therapy
2025-11-06	three-week break from the devices brought symptoms back, needed the clinic againI took a break for three weeks and I had to return to the clinic for treatment. In context ↗	Moderate
2026-04-23	better than a year earlier on meds and red light therapy, still mostly houseboundI’m better than I was at this time last year, thanks to a bunch of meds and red light therapy, but I’m still pretty housebound. In context ↗	Moderate	Red and near-infrared light therapy

Adverse events

COVID vaccination as treatment“My first shot (Moderna) caused intense vomiting in the parking lot of the vaxx centre and continued for 24 hours non-stop.” In context ↗ Gut side effects
Low-dose naltrexone“The only side-effect I had is vivid dreams for a couple of weeks (and I’m a bit sweatier than normal).” In context ↗ Side effects
Low-dose naltrexone“I also had night sweats for a couple of months; I lost about 10 kilos from it all, which was all inflammation” In context ↗ Side effects
COVID vaccination as treatment“which caused me to violently projectile vomit for 17 months (and bulge a disk in my spine)” In context ↗ Other
COVID vaccination as treatment“I also had a frozen shoulder for a year, thanks to the nasty jab” In context ↗ Other
“I had a tetanus shot (dog bite) about a month after my covid infection this year and I did need a day of complete rest afterwards.” In context ↗ Side effects
COVID vaccination as treatment“I felt a bit light-headed for a few minutes afterwards” In context ↗ Low blood pressure or fainting
Lisdexamfetamine (Vyvanse, Elvanse)“The long covid doc prescribed Vyvanse as I’m already on LDN, and it made me suicidal.” In context ↗ Suicidal thoughts or attempt
Mestinon / pyridostigmine“I couldn’t take it for more than a couple of days due to the side-effects (major nausea)” In context ↗ Gut side effects
“I’ve tried a bunch a supplements and off-label medications, some which made me shit myself and suicidal.” In context ↗ Gut side effects
“I’ve tried a bunch a supplements and off-label medications, some which made me shit myself and suicidal.” In context ↗ Suicidal thoughts or attempt
Red and near-infrared light therapy“I overdid the helmet when it first arrived and it made my brain hurt for a few hours, but I slept it off.” In context ↗ Made symptoms worse
“I had no side-effects except I was a bit wobbly from the Shiftwave.” In context ↗ Side effects
Low-dose Abilify / aripiprazole“I gained so much weight on LDA, I was worried about my joints, so I stopped it.” In context ↗ Side effects
Thymosin alpha-1 (Ta1)“I had a ‘flu-like reaction to my first dose, so I decreased it by a third for my second shot.” In context ↗ Side effects

Symptoms mentioned

Anxiety & low mood Brain fog Breathlessness Hair loss Muscle weakness POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Tinnitus

Their words about their symptoms

Post-exertional malaiseI still have major fatigue and PEM In context ↗
Brain fognow I have debilitating brain fog and PEM In context ↗
Tinnitusmy tinnitus is 75% better after taking 2 x 200mg of Celebrex every day In context ↗
Sleep problemsLong covid insomnia is no joke! In context ↗
Pain & fibromyalgiaPost-covid, I also developed swelling in my hands and joint pain In context ↗
POTS & dysautonomiaI really only have dizziness when I stand up too fast In context ↗
Anxiety & low moodI was definitely depressed, but the Cymbalta kept the worst of it at bay. In context ↗
Hair lossI didn’t realize how thin my hair had become until it suddenly grew back after using a red light helmet In context ↗
Muscle weaknessI was unable to even lift my arm to wave goodbye to my kid, it was that bad In context ↗
BreathlessnessI used to be out of breath after a couple of meters In context ↗

Largely bedbound with ME/CFS, now somewhat better and housebound; LDN helped partly

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

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Long COVID: unable to work for months, now somewhat better after antihistamines and LDN

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