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ME/CFS Very severe → relapsedIll 5 years before improving or writing

In bed for months with ME/CFS, radical rest helped, then back to mostly bedbound

Petrel 94038 on RedditLast post Dec 2025

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
5 years
Last post
Dec 2025
In their words
  • Condition: ME/CFSYes - I have me/cfs from a virus in 2019 that re-activated Lymes and HHV-6. In context ↗
  • At worst: Very severeWhen I was very severe (no light no sound not able to speak) I couldn’t really take anything In context ↗
  • Now: Relapsedafter recovery I was moderate, could travel a bit. I’m back to severe now bc of constant reactivations of pneumonia and HHV-6 In context ↗
  • Began after: another virusI’ve been sick with me/cfs since a viral infection in 2019.
Read from 114 of their posts and comments; links to the 48 this page draws on

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Summary

Petrel 94038 fell ill after a viral infection in 2019 and was in bed for months before pushing back to work and socializing; they call a later Miami trip the point of no return. Antivirals helped only partly or briefly and many supplements made them worse, while acupuncture helped maintain their baseline; they credit radical rest with lifting them from severe to moderate in 2024. Pneumonia and HHV-6 reactivations and supplement reactions later took them back to mostly bedbound.

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What they tried

What they credit

Radical rest· Helped a lot · mainValtrex· Helped · main · wore offOliverex· Helped · mainAcupuncture· Helped · mainClassics Pearl herbal pills· HelpedDoxycycline· Helped · wore offPacing· HelpedTop surgery· Helped · wore off

Also tried

Bone broth / chicken broth· HelpedTHC edibles· Helped · wore offMelatonin· Helped · wore offMagnesium· HelpedCefdinir· HelpedSkullcap tea· HelpedElectrolytes· HelpedCold exposure· HelpedOxycodone· HelpedLorazepam· HelpedZyrtec· HelpedPepcid· HelpedCromolyn· HelpedSlow breathing exercises· HelpedLyme specialist protocols· No changeCBD· No changeQi gong and light stretching· No changeChamomile· No changeBenadryl· No changeFamciclovir· No changeAlcohol· WorseCoffee· WorseAdderall· WorseSupplements· WorseValerian· WorseCraniosacral therapy· WorseProbiotics· WorseVitamin B· WorseHydroxyzine· WorseNystatin· Not saidIV vitamins· Not saidHealing my gut diet· Not saidZzzquil· Not saidMedical food powder (UltraGI Replenish)· Not saidVisible· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
  • Alcohol · WorseWhen I was more mild I definitely used alcohol and coffee to mask the fatigue / PEM, but that made me bed bound. In context ↗
  • Adderall · WorseI used adderall and alcohol in the first years to get myself out the door and socializing In context ↗
  • Lyme specialist protocols · No changeafter working w a lymes specialist and doing two years of protocols without any improvement In context ↗
  • Supplements · WorseI can’t even tolerate vitamins tbh - most supplements have made my exhaustion way worse. In context ↗
  • Valtrex · Helpedthe first time actually felt really bad while I was taking them but felt 20% better afterward (lasted a few months), then the second and third round I saw 10-20% improvement while taking the pills, but after I stopped, improvement faded away. In context ↗
  • Oliverex · Helpedthis, plus valtrex, oliverex have been the most impactful for me In context ↗
  • Acupuncture · Helpedacupuncture is one of the only things that cut through brain fog and give me energy In context ↗
  • Bone broth / chicken broth · Helpedbone broth props me up a bit ... I don’t do it often but it helps me with crashes
  • Classics Pearl herbal pills · HelpedI’ve been through several protocols of Classics Pearl herbal pills ... I’ve definitely seen positive results after I’ve finished In context ↗
  • THC edibles · HelpedWeed has honestly been a godsend, it takes the poisoned dying feeling away, gets my hunger up, and knocks me out / less risk of overdoing it. In context ↗
  • CBD · No changePersonally CBD doesn’t do much for me In context ↗
  • Melatonin · Helpedmelatonin has saved me a few times for sure but I do build tolerance quickly In context ↗
  • Magnesium · HelpedRight now I’ve been doubling my magnesium at night and it’s been working nicely In context ↗
  • Valerian · Worsesometimes switch over to magnesium + valerian but i have really bad dreams - feel even more tired in the morning In context ↗
  • Qi gong and light stretching · No changewith qi gong and super light stretching but nothing seems to help In context ↗
  • Chamomile · No changeI’ve been trying to basically sedate myself (cbd, camomile, magnesium, thc to sleep) ... nothing seems to help In context ↗
  • Craniosacral therapy · WorseI felt absolutely obliterated after ... I was in a worse state than I had personally ever been In context ↗
  • Doxycycline · HelpedI’ve had varying degrees of luck with doxy- no permanent fix, no permanent hurt. The best case was that I went into mild mode and could travel and have fewer PEM crashes. In context ↗
  • Cefdinir · Helpedthe days i’m taking cefdinir (3 days a week) it pulls me out a bit In context ↗
  • Nystatin · Not saidI’m currently on doxycycline, nystatin, and cefdinir as well as some probiotics In context ↗
  • Skullcap tea · Helpedi drink skullcap tea and it’s helped w anxiety and rest for sure In context ↗
  • Probiotics · WorseI react negatively to probiotics ... immediately my food reactions and brain fog got worse In context ↗
  • Vitamin B · WorseI definitely have reactions to vitamin B - makes my exhaustion worse In context ↗
  • IV vitamins · Not saidSwitched to IV once a month or so but honestly have no idea if it does any good. In context ↗
  • Pacing · HelpedI’ve definitely benefited from general pacing but that’s about it In context ↗
  • Electrolytes · Helpedelectrolytes and laying down In context ↗
  • Cold exposure · Helpedi’ve found some cold exposure helps me In context ↗
  • Healing my gut diet · Not saidI’ve worked on “healing my gut” and eating lots of fiber and protein. In context ↗
  • Radical rest · Helped a lotIt took me a good 6 months of radical rest to go from severe to moderate In context ↗
  • Top surgery · HelpedI was severe before surgery - bedbound with constant flares, flu symptoms - after recovery I was moderate, could travel a bit. In context ↗
  • Oxycodone · HelpedHad an oxy prescription after a surgery and that felt great but the immediate tolerance/needing more every day to feel the same scared tf out of me. In context ↗
  • Hydroxyzine · WorseI had to stop because it weirdly flared my MCAS but it was great for anxiety and sleeping better In context ↗
  • Lorazepam · HelpedI use lorazepam when I feel a crash coming on. It has a calming effect on brain and nerves. In context ↗
  • Zyrtec · Helpedafter zyrtec i can handle a bit more solid food without going into anaphylaxis In context ↗
  • Pepcid · HelpedZyrtec and pepcid and cromolyn dug me out of that In context ↗
  • Benadryl · No changeBenadryl and hydroxyzine (best sleep of my life) don’t work well for me In context ↗
  • Zzzquil · Not saidmagnesium + lorazepam or melatonin or zzzquil In context ↗
  • Medical food powder (UltraGI Replenish) · Not saidcan mostly only drink medical grade food powder In context ↗
  • Famciclovir · No changeFamciclovir doesn’t do anything In context ↗
  • Slow breathing exercises · Helpeddo slow breathing exercises ... the only thing that has broken my need for escapism overstimulation In context ↗
  • Visible · Not saidI’ve used it and found it incredibly unreliable In context ↗
  • COVID vaccination as treatment · Not saidI also have bad reactions and have been weighing whether or not to continue w boosters In context ↗

Approaches: Alternative therapies · Antibiotics · Antivirals · Pacing · Radical rest · Supplements · Surgery & structural

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y3 y4 y5 y6 y

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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
2019viral infection; in bed for several monthsAfter getting a virus and being in bed for several months in 2019 i started feeling better. In context ↗Severe
2019pushed back to work and socialising; Miami all-nighter was the point of no returnI always think back to a trip I took to Miami, dancing at Twist until 4am as being the point of no return. In context ↗Mild
2021masked fatigue with beer, coffee and adderall; baseline got much worsethe first 2 years of cfs i used beer / coffee to mask my exhaustion ... my baseline has gotten so much worse In context ↗Moderate
2022pneumonia left her physically worseI somehow got pneumonia last year and that has likely been the root to a lot of changes In context ↗Severe
March 2023craniosacral herxing; non-verbal and out of breath sitting upI was in a worse state than I had personally ever been. Non-verbal, out of breath sitting up levels. In context ↗Very severe
August 2023physically worse and mostly bed-housebound, but brain fog clearedI’m physically worse, mostly bed-housebound, but my brain fog has mostly disappeared In context ↗Severe
Spring 2024a month of rest after surgery; could cook and leave the house a couple of times a weekthis spring i went from flu symptoms / crashing every day bed bound to cooking for myself most days and I can leave the house a couple times a week (for no more than an hour) In context ↗ModerateRadical rest
September 2024top surgery rest period raised her baseline from 90% to 80% bedboundI was 90% bedbound now I’m like 80% bed bound and can shower more. In context ↗SevereRadical rest
October 2024months of aggressive rest brought her back to moderate and homeboundthis year I really prioritized rest, and progressed to homebound, working remotely and leaving the house on occasion In context ↗ModerateRadical rest
December 2024worst flare of her life; mostly only medical food powdercurrently in the worst flare of my life and can mostly only drink medical grade food powder In context ↗Severe
March 2025declining again from reactions to supplementsNow i’m declining again bc I keep reacting to damned supplements In context ↗Severe
April 2025back to severe from pneumonia and HHV-6 reactivationsI’m back to severe now bc of constant reactivations of pneumonia and HHV-6 In context ↗Severe
December 2025still mostly bedbound, able to use a computer, cook and occasionally leave the houseI’m mostly bed bound but can use phone/computer, cook for myself and occasionally leave the house. In context ↗Severe

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsLight & noise sensitivityMast cell (MCAS) & allergiesPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
  • Post-exertional malaiseI do experience PEM from exercise, social activity, overstimulation as well as food. In context ↗
  • Brain fogI can get immediate brain fog and exhaustion from just about anything In context ↗
  • Mast cell (MCAS) & allergiesi have me/cfs and mcas In context ↗
  • Sleep problemsI struggle to get 5 hours most nights In context ↗
  • Pain & fibromyalgiai use it near daily to help with fatigue pain In context ↗
  • Light & noise sensitivityWhen I was very severe (no light no sound not able to speak) In context ↗
  • BreathlessnessNon-verbal, out of breath sitting up levels. In context ↗
  • Anxiety & low moodI know my anxiety is getting worse because intrusive thoughts are back as well In context ↗
  • Flu-like symptomshave flu like symptoms constantly In context ↗

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