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 COVID
I 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 severe
I was fainting anywhere from 12-48 times a day and at my worst couldn't even sit up in bed.
In context ↗ - Now: Near normal
Generally though like 98% health and actually way healthier than I was before I got sick in 2020
In context ↗ - Began after: COVID
I had Covid in January 2020 in NYC.
In context ↗ - Says they never had: Anxiety & low mood
I’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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What they tried
What they credit
Also tried
Their words about each treatment
- Fluconazole and other antifungals · Helped a lot
Multiple courses of Fluconazole have helped tremendously
In context ↗ - Low-dose naltrexone (LDN) · Helped
I’m on 4.5mg LDN
In context ↗ - Gabapentin / Horizant · Helped a lot
Gabapentin really helped my gastroparesis. It was such a huge relief
In context ↗ - Mestinon / pyridostigmine · Helped
Mestinon and gabapentin were really helpful for me.
In context ↗ - Propranolol · No change
I was on propranolol at one point but it wasn’t comparable.
In context ↗ - Midodrine · No change
midodrine, it didn’t really do much for me after I started the Ivabradine.
In context ↗ - Ivabradine · Helped a lot
Ivabradine legitimately changed my life!
In context ↗ - Cymbalta (SNRI), Wellbutrin, Zoloft and trazodone · Helped a lot
Cymbalta (SNRI) has been super helpful for me.
In context ↗ - 5-HTP · Helped
I’ve found supplementing 5htp to be really helpful
In context ↗ - Ketamine troches · Helped
I’ve found the ketamine troches help a lot. I do 25mg twice a day.
In context ↗ - Iron infusions (Venofer) · Helped a lot
Iron infusions really helped me.
In context ↗ - Iron bisglycinate · Not said
I also supplement with iron bisglycinate to hopefully maintain my iron levels.
In context ↗ - NAD+ infusions, nicotinamide riboside and subcutaneous NAD+ · Helped
I do NAD subq injections and I LOVE them!
In context ↗ - CoQ10 · Helped
I take coq10 w/pqq i find it to be really helpful
In context ↗ - NAC and glutathione · Helped
I take 1800mg of NAC a day
In context ↗ - Methylated B12 injections and L-5-MTHF · Helped
I do IM methyl b12 injections 3x a week and it’s super easy, helpful
In context ↗ - Vitamin D with K · Helped
vitamin d w/k, phosphatidylcholine, Coq10, magnesium, pqq, iron, and methylated b12 have all been pretty major.
In context ↗ - PQQ · Helped
PQQ 20mg 2x a day
In context ↗ - Phosphatidylcholine · Helped
Phosphatidyl Choline 400mg a day
In context ↗ - Riboflavin · Helped
Riboflavin 5-phosphate 36.5mg a day
In context ↗ - Vitamin E · Not said
Vitamin E 268mg 2x a day ( if my stomach can handle it)
In context ↗ - Zinc · Not said
Zinc Piccolinate 15mg 3x a week
In context ↗ - DopaBoost · Helped
I’m also a big fan of the supplement Dopaboost by Designs for Health.
In context ↗ - Low-histamine diet · Helped
Switching up my diet to be more considerate/ more low histamine ... has been really helpful for my allergies over all.
In context ↗ - Ketogenic diet · No change
Keto wasn’t the best for me.
In context ↗ - Glucose moderation and small frequent meals · Helped
I’ve found focusing on low glycemic impact really helpful and frequent smaller meals.
In context ↗ - Intermittent fasting · No change
IF/ fasting does not.
In context ↗ - Extended water fasting · Not said
I’ve done water fasts in the past (18 days at one point)!
In context ↗ - Pacing · Helped
Pacing for the win
In context ↗ - Pilates, gyrotonic and gentle strength training · Helped
I do pilates and gyrokinesis 2-3x a week
In context ↗ - EMDR trauma therapy · Helped
therapy and emdr super helpful for both my physical and mental health.
In context ↗ - Red light therapy and PEMF · Helped
I find it helpful! Nice recharge for the mitochondria.
In context ↗ - Cryotherapy · Helped
red light therapy and cryo really helpful.
In context ↗ - Short burst oxygen therapy · Helped
SBOT (short Burst oxygen therapy)
In context ↗ - Salt, fluids and compression · Helped
drinking a lot of water with electrolyte salts ... super helpful.
In context ↗ - Cromolyn and NasalCrom · Helped a lot
Cromolyn has been incredibly helpful for me
In context ↗ - H1 antihistamines · Helped
Allegra works really well for me.
In context ↗ - H2 blockers · Helped
in combination with Pepcid it’s also used quite a bit for the MCAS
In context ↗ - Progesterone · Helped
I take progesterone to reduce inflammation and the severity of my periods. Works really well for me.
In context ↗ - DIM · Helped
I also use DIM throughout my cycle.
In context ↗ - Mirena IUD · Helped a lot
I got a morena iud. It’s been really helpful.
In context ↗ - Uterine surgery · Helped
I also recently had a non-invasive surgery to help correct the shape of my uterus
In context ↗ - Acupuncture · Worse
after years of doing acupuncture post LC suddenly every needle become painful.
In context ↗ - CBN gummies · Helped
CBN gummies really help me more than anything else
In context ↗ - Benzodiazepines · No change
nor did benzos which I’m thankful for.
In context ↗ - Zolpidem / Ambien · No change
Zolpidem, trazadone, hydroxyzine, cyproheptadine all didn’t work for me
In context ↗ - Holy basil · No change
from holy basil to trazadone and ambien
In context ↗ - Probiotics and butyrate · Not said
allowed me to make progress with probiotics, butyrate, etc.
In context ↗ - Biocidin · Not said
a herbal supplement called biocidin to help treat the candida
In context ↗ - Xlear nasal spray · Helped
I also really like Xlear with two drops of biocidin
In context ↗ - Visible app · Not said
I use visible to track symptoms and I really like it for that.
In context ↗ - Thyroid medication · Not said
I also was able to drop my thyroid medication way down
In context ↗ - Vyvanse · Helped
I take a very very long dose of vyvanse (5mg)
In context ↗ - COVID vaccination as treatment · Worse
Omg 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 said
Hydroxyzine personally doesn’t agree with me, gives me a headache and makes me sleepy
In context ↗ - Antibiotics (unspecified) · Not said
I 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
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 |
|---|---|---|---|
| January 2020 | COVID-19 infection, first wave in NYCI had Covid in January 2020 in NYC.In context ↗ | Mild | |
| 2020 | bed bound, lost a third of her body weightI was bed bound for the following 2 years.In context ↗ | Very severe | |
| 2021-2022 | first period of remission after antifungal treatmentAfter I did my first course of treatment I went into my first period of remission.In context ↗ | Severe | Fluconazole (Diflucan) |
| 2022 | nine-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 ↗ | Mild | Ivabradine |
| December 2023 | severe 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 2024 | duloxetine plus iron infusions, roughly 90% recoveredThat plus iron infusions has me feeling 90% recovered.In context ↗ | Mild | |
| 2025 | 98% 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
- Lisdexamfetamine (Vyvanse, Elvanse)“no amount of vyvanse is going to make me feel better. It’ll just make my gears spin so to speak and irritate my system which is bad all around. ... it was too much norepinephrine for my brain chemistry” Side effects
- Vitamin B12, Methylfolate (L-methylfolate, 5-MTHF)“b vitamin supplements make me super queesy but I was able to switch to doing injections” In context ↗ Gut side effects
- Ivabradine“having too much was pushing my heart beat slower than it needed to be” In context ↗ Heart rhythm problems
- Acupuncture“after years of doing acupuncture post LC suddenly every needle become painful” In context ↗ Nerve pain
- Ketamine“The only negative I’ve experienced is that they taste kind of bitter.” In context ↗ Other
- COVID vaccination as treatment“Omg 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” Made symptoms worse
- Duloxetine (Cymbalta)“When I did take it in the morning it made me really spacey and out of it. ... taking it in the morning increased my fatigue” Side effects
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“The second time (400mg) I felt absolutely awful during, pretty bad after and continued to not really feel very well. ... the iv’s were too stressful for my already strained system” Side effects
- Probiotics and fermented foods“My probiotic? Also a no no.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I had some visual distortions as a side effect of the LDN so I just take it at night and it hasn’t been an issue.” In context ↗ Side effects
- Hydroxyzine (Atarax, Vistaril)“Hydroxyzine personally doesn’t agree with me, gives me a headache and makes me sleepy” In context ↗ Side effects
- Bupropion (Wellbutrin)“The bupropion just made me feel a little more like my gears were grinding than usual but with no added energy or positive benefit” In context ↗ Side effects
- Iron infusion / ferritin repletion“They made me feel pretty crappy for the 72 hours after a session” In context ↗ Side effects
- Antibiotics (unspecified)“I had a resurgence of both the candida and valley fever after I went on antibiotics earlier this summer for pneumonia.” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I don’t have PEM anywhere like I used to.
In context ↗ - Brain fog
Also, my brain fog totally disappeared.
In context ↗ - POTS & dysautonomia
I still have some dysautonomia but these days it mostly just affects my sleep
In context ↗ - Mast cell (MCAS) & allergies
I still have some struggles with my MCAS and histamine issues but thankfully not plagued by the gastroparesis!
In context ↗ - Sleep problems
Sleeps my biggest issue and heat still kicks my ass.
In context ↗ - Pain & fibromyalgia
I was in 8/10 pain for years and now I’m a 2/10 on a bad day which is rare.
In context ↗ - Headaches & migraine
For awhile I was having up to five migraines a week.
In context ↗ - Gut problems
I got really bad gastroparesis during the worst of my illness and the only thing that really helped was gabapentin.
In context ↗ - Light & noise sensitivity
When I was at my worst I was so light sensitive that I was wearing sunglasses in a totally blacked out room.
In context ↗ - Breathlessness
I’ve done NAD infusions for fatigue and breathlessness.
In context ↗ - Heart symptoms & palpitations
No heart palpitations or tachycardia.
In context ↗ - Muscle weakness
Things were so bad I couldn’t even hold a fork.
In context ↗ - Neuropathy & tingling
I have some loss of feeling and neuropathy going down my legs and into my feet.
In context ↗ - Flu-like symptoms
I did have fevers the first year and half every afternoon of around 100-101.
In context ↗ - Temperature regulation
I’m super heat intolerant as well.
In context ↗ - Vision problems
I still get weird visual trails sometimes at night.
In context ↗
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