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Long COVID Very severe → near normalIll 2.5 years before improving or writingNeeds ongoing treatment

Bedbound with long COVID over two years, now at 85% after ivabradine and duloxetine

Condition
Long COVID
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
2.5 years
Last post
Jul 2026
In their words
  • Condition: Long COVIDI have me/cfs long COVID which left me bed bound literally for years and now I’m actually doing super great. In context ↗
  • At worst: Very severeI was fainting anywhere from 12-48 times a day and at my worst couldn't even sit up in bed. In context ↗
  • Now: Near normalGenerally though like 98% health and actually way healthier than I was before I got sick in 2020 In context ↗
  • Began after: COVIDI had Covid in January 2020 in NYC. In context ↗
  • Says they never had: Anxiety & low moodI’m not someone who’s ever struggled with depression
Read from 537 of their posts and comments; links to the 76 this page draws on

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Summary

Eagle 35616 fell ill with COVID in January 2020 and spent over two years bed bound, fainting dozens of times a day and unable to stand without collapsing or to hold a fork. Boosters were the worst thing that had ever happened to them. Ivabradine stopped the POTS and brought a nine-month remission; after a winter crash, duloxetine (an SNRI) and iron infusions lifted them to about 85% health by 2024, still heat sensitive with residual blood pooling and sleep problems.

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Asking aboutEagle 35616’s story

What they tried

Their words about each treatment
  • Fluconazole and other antifungals · Helped a lotMultiple courses of Fluconazole have helped tremendously In context ↗
  • Low-dose naltrexone (LDN) · HelpedI’m on 4.5mg LDN In context ↗
  • Gabapentin / Horizant · Helped a lotGabapentin really helped my gastroparesis. It was such a huge relief In context ↗
  • Mestinon / pyridostigmine · HelpedMestinon and gabapentin were really helpful for me. In context ↗
  • Propranolol · No changeI was on propranolol at one point but it wasn’t comparable. In context ↗
  • Midodrine · No changemidodrine, it didn’t really do much for me after I started the Ivabradine. In context ↗
  • Ivabradine · Helped a lotIvabradine legitimately changed my life! In context ↗
  • Cymbalta (SNRI), Wellbutrin, Zoloft and trazodone · Helped a lotCymbalta (SNRI) has been super helpful for me. In context ↗
  • 5-HTP · HelpedI’ve found supplementing 5htp to be really helpful In context ↗
  • Ketamine troches · HelpedI’ve found the ketamine troches help a lot. I do 25mg twice a day. In context ↗
  • Iron infusions (Venofer) · Helped a lotIron infusions really helped me. In context ↗
  • Iron bisglycinate · Not saidI also supplement with iron bisglycinate to hopefully maintain my iron levels. In context ↗
  • NAD+ infusions, nicotinamide riboside and subcutaneous NAD+ · HelpedI do NAD subq injections and I LOVE them! In context ↗
  • CoQ10 · HelpedI take coq10 w/pqq i find it to be really helpful In context ↗
  • NAC and glutathione · HelpedI take 1800mg of NAC a day In context ↗
  • Methylated B12 injections and L-5-MTHF · HelpedI do IM methyl b12 injections 3x a week and it’s super easy, helpful In context ↗
  • Vitamin D with K · Helpedvitamin d w/k, phosphatidylcholine, Coq10, magnesium, pqq, iron, and methylated b12 have all been pretty major. In context ↗
  • PQQ · HelpedPQQ 20mg 2x a day In context ↗
  • Phosphatidylcholine · HelpedPhosphatidyl Choline 400mg a day In context ↗
  • Riboflavin · HelpedRiboflavin 5-phosphate 36.5mg a day In context ↗
  • Vitamin E · Not saidVitamin E 268mg 2x a day ( if my stomach can handle it) In context ↗
  • Zinc · Not saidZinc Piccolinate 15mg 3x a week In context ↗
  • DopaBoost · HelpedI’m also a big fan of the supplement Dopaboost by Designs for Health. In context ↗
  • Low-histamine diet · HelpedSwitching up my diet to be more considerate/ more low histamine ... has been really helpful for my allergies over all. In context ↗
  • Ketogenic diet · No changeKeto wasn’t the best for me. In context ↗
  • Glucose moderation and small frequent meals · HelpedI’ve found focusing on low glycemic impact really helpful and frequent smaller meals. In context ↗
  • Intermittent fasting · No changeIF/ fasting does not. In context ↗
  • Extended water fasting · Not saidI’ve done water fasts in the past (18 days at one point)! In context ↗
  • Pacing · HelpedPacing for the win In context ↗
  • Pilates, gyrotonic and gentle strength training · HelpedI do pilates and gyrokinesis 2-3x a week In context ↗
  • EMDR trauma therapy · Helpedtherapy and emdr super helpful for both my physical and mental health. In context ↗
  • Red light therapy and PEMF · HelpedI find it helpful! Nice recharge for the mitochondria. In context ↗
  • Cryotherapy · Helpedred light therapy and cryo really helpful. In context ↗
  • Short burst oxygen therapy · HelpedSBOT (short Burst oxygen therapy) In context ↗
  • Salt, fluids and compression · Helpeddrinking a lot of water with electrolyte salts ... super helpful. In context ↗
  • Cromolyn and NasalCrom · Helped a lotCromolyn has been incredibly helpful for me In context ↗
  • H1 antihistamines · HelpedAllegra works really well for me. In context ↗
  • H2 blockers · Helpedin combination with Pepcid it’s also used quite a bit for the MCAS In context ↗
  • Progesterone · HelpedI take progesterone to reduce inflammation and the severity of my periods. Works really well for me. In context ↗
  • DIM · HelpedI also use DIM throughout my cycle. In context ↗
  • Mirena IUD · Helped a lotI got a morena iud. It’s been really helpful. In context ↗
  • Uterine surgery · HelpedI also recently had a non-invasive surgery to help correct the shape of my uterus In context ↗
  • Acupuncture · Worseafter years of doing acupuncture post LC suddenly every needle become painful. In context ↗
  • CBN gummies · HelpedCBN gummies really help me more than anything else In context ↗
  • Benzodiazepines · No changenor did benzos which I’m thankful for. In context ↗
  • Zolpidem / Ambien · No changeZolpidem, trazadone, hydroxyzine, cyproheptadine all didn’t work for me In context ↗
  • Holy basil · No changefrom holy basil to trazadone and ambien In context ↗
  • Probiotics and butyrate · Not saidallowed me to make progress with probiotics, butyrate, etc. In context ↗
  • Biocidin · Not saida herbal supplement called biocidin to help treat the candida In context ↗
  • Xlear nasal spray · HelpedI also really like Xlear with two drops of biocidin In context ↗
  • Visible app · Not saidI use visible to track symptoms and I really like it for that. In context ↗
  • Thyroid medication · Not saidI also was able to drop my thyroid medication way down In context ↗
  • Vyvanse · HelpedI take a very very long dose of vyvanse (5mg) In context ↗
  • COVID vaccination as treatment · WorseOmg the boosters were the worst thing that’s ever happened to me. ... Caused me massive massive declines. ... mind triggered a year and a half relapse where I couldn’t walk, eat, messed up my vision
  • Hydroxyzine (Atarax, Vistaril) · Not saidHydroxyzine personally doesn’t agree with me, gives me a headache and makes me sleepy In context ↗
  • Antibiotics (unspecified) · Not saidI had a resurgence of both the candida and valley fever after I went on antibiotics earlier this summer for pneumonia. In context ↗

Approaches: POTS medication · SNRIs · SSRIs · Alternative therapies · Antifungals · Exercise and activity · Hormones & thyroid · Other antidepressants · Other drugs and medicines · Pacing · Supplements · Surgery & structural · Trauma & somatic work

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y3 y4 y5 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. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
January 2020COVID-19 infection, first wave in NYCI had Covid in January 2020 in NYC. In context ↗Mild
2020bed bound, lost a third of her body weightI was bed bound for the following 2 years. In context ↗Very severe
2021-2022first period of remission after antifungal treatmentAfter I did my first course of treatment I went into my first period of remission. In context ↗SevereFluconazole (Diflucan)
2022nine-month near-remission; back to Pilates, yoga, walking the dogAfter 2 1/2 years bed bound unable to stand without collapsing I pretty immediately went back to a fairly normal existence. In context ↗MildIvabradine
December 2023severe winter crash: bed bound, fainting 12-24 times a dayI had one this winter where I literally couldn't leave bed or sit up without fainting. In context ↗Very severe
April 2024duloxetine plus iron infusions, roughly 90% recoveredThat plus iron infusions has me feeling 90% recovered. In context ↗Mild
202598% health, rock climbing and building, tapering ivabradine; still heat sensitive with sleep and MCAS issuesI’ve been healthier than before I was sick for a good spell now. In context ↗Near normal

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaiseI don’t have PEM anywhere like I used to. In context ↗
  • Brain fogAlso, my brain fog totally disappeared. In context ↗
  • POTS & dysautonomiaI still have some dysautonomia but these days it mostly just affects my sleep In context ↗
  • Mast cell (MCAS) & allergiesI still have some struggles with my MCAS and histamine issues but thankfully not plagued by the gastroparesis! In context ↗
  • Sleep problemsSleeps my biggest issue and heat still kicks my ass. In context ↗
  • Pain & fibromyalgiaI was in 8/10 pain for years and now I’m a 2/10 on a bad day which is rare. In context ↗
  • Headaches & migraineFor awhile I was having up to five migraines a week. In context ↗
  • Gut problemsI got really bad gastroparesis during the worst of my illness and the only thing that really helped was gabapentin. In context ↗
  • Light & noise sensitivityWhen I was at my worst I was so light sensitive that I was wearing sunglasses in a totally blacked out room. In context ↗
  • BreathlessnessI’ve done NAD infusions for fatigue and breathlessness. In context ↗
  • Heart symptoms & palpitationsNo heart palpitations or tachycardia. In context ↗
  • Muscle weaknessThings were so bad I couldn’t even hold a fork. In context ↗
  • Neuropathy & tinglingI have some loss of feeling and neuropathy going down my legs and into my feet. In context ↗
  • Flu-like symptomsI did have fevers the first year and half every afternoon of around 100-101. In context ↗
  • Temperature regulationI’m super heat intolerant as well. In context ↗
  • Vision problemsI still get weird visual trails sometimes at night. In context ↗

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