Long COVID
Severe → relapsedIll 4 years before improving or writing
Mostly bedbound with long COVID, improved then relapsed; ivabradine and diet helped
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Dec 2023
In their words
- At worst: Severe
I’ve been mostly bedbound ever since.
In context ↗ - Now: Relapsed
I had a relapse last November, and have been mostly bedbound ever since.
In context ↗ - Began after: COVID
I have long Covid and acquired it long before vaccines were available.
Read from 31 of their posts and comments; links to the 20 this page draws on
Summary
Marsh 57174 fell ill in March 2020 and, after resuming exercise, developed long COVID with dysautonomia and ME/CFS and became mostly bedbound. They improved enough for short walks in summer 2022, then relapsed in November 2022 and stayed mostly bedbound. Ivabradine eased their heart rate and dizziness and low-histamine eating helped their stomach; low-dose naltrexone increased fatigue without benefit. They remained severely limited.
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What they tried
Also tried
Ivabradine· HelpedPropolis· HelpedQuercetin· Helpedpacing (spoon theory)· Helpedlow histamine diet· Helpednaturopath· HelpedGABA supplement· Helpedmagnesium· Helpedmelatonin· HelpedCBD· HelpedGratitude Masterclass through Calm· HelpedLDN· No changeanti-depressants· No changephysiotherapist exercises· Worsefamotidine· Worsedaily walks· Much worsebeta blockers· Much worsea ton of supplements· Not said
Their words about each treatment
- daily walks · Much worse
I went for daily walks, even though I was struggling to breathe and was extremely dizzy
In context ↗ - beta blockers · Much worse
I tried beta blockers but they gave me severe heart palpitations and atrial fibrillation.
In context ↗ - Ivabradine · Helped
I’m on Ivabradine which helps to regulate heart rate. It reduces my dizziness and allows me to walk around the house without having to hold on to walls and the furniture.
In context ↗ - LDN · No change
I’m at 2mg now and haven’t noticed any overall improvement but I’m still planning to work up to 4.5mg.
In context ↗ - anti-depressants · No change
Most doctors just keep trying to give me anti-depressants that don’t help my symptoms.
In context ↗ - Propolis · Helped
I actually think it did help, but it’s really gross and gets stuck all over your teeth, so I haven’t been using it lately.
In context ↗ - Quercetin · Helped
I also take Quercetin every day before dinner, and that seems to help a lot.
In context ↗ - pacing (spoon theory) · Helped
Pacing and rest help to manage my symptoms, but I can do very little without experiencing post exertional malaise.
In context ↗ - low histamine diet · Helped
Now I do my best to avoid high histamine foods and eat as many fresh foods as possible ... It definitely has reduced my reactions
In context ↗ - a ton of supplements · Not said
I’m on a ton of supplements but not sure if anything is helping significantly.
In context ↗ - physiotherapist exercises · Worse
We were progressing well but when we moved to standing exercises, I had a terrible relapse
In context ↗ - naturopath · Helped
She took the time to go through my diet, symptoms and then actually recommended I take less vitamins and supplements, but recommended better quality ones targeted to my specific symptoms. I found it helpful.
In context ↗ - famotidine · Worse
I found famotidine made me feel very jittery and anxious.
In context ↗ - GABA supplement · Helped
I take a GABA supplement, magnesium, melatonin, and CBD before bed, and that combination seems to help a lot.
In context ↗ - Gratitude Masterclass through Calm · Helped
I found the Gratitude Masterclass through Calm to be quite helpful. I do a gratitude countdown everyday and it’s helping to change my mindset.
In context ↗
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 |
|---|---|---|
| March 2020 | first nervous system symptoms, seemed to be improvingI first had some nervous system issues in March 2020, but neither my doctor nor I related them to Covid.In context ↗ | Mild |
| mid 2020 | full long COVID with dysautonomia after resuming exercise and pushing daily walksa few months later I developed full-fledged long Covid, including dysautonomia ... I’ve been mostly bedbound ever sinceIn context ↗ | Severe |
| summer 2022 | short walks, light meals and short visits with friendsI thought I was showing some improvement last summer and was able to go for short walks, prepare some light meals and have short visits with friends.In context ↗ | Moderate |
| November 2022 | relapse, mostly bedbound againI had a relapse last November, and have been mostly bedbound ever since.In context ↗ | Severe |
| 2023-12 | still mostly bedbound, on Ivabradine and low-dose naltrexoneI’m mostly bedbound now.In context ↗ | Severe |
Adverse events
- Physical therapy / physiotherapy“We were progressing well but when we moved to standing exercises, I had a terrible relapse” In context ↗ Made symptoms worse
- Low-dose naltrexone“Yes, I was extremely fatigued when I started to the point where I could hardly hold my head up to eat dinner. It passed in about 2 weeks.” In context ↗ Side effects
- Low-dose naltrexone“The LDN increased my fatigue so I’m working up slowly.” In context ↗ Side effects
- Beta-blockers (unspecified)“I tried beta blockers but they gave me severe heart palpitations and atrial fibrillation.” In context ↗ Heart rhythm problems
- Famotidine (Pepcid)“I found famotidine made me feel very jittery and anxious.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
I can do very little without experiencing post exertional malaise
In context ↗ - POTS & dysautonomia
I still experience orthostatic intolerance and can’t stay upright for long
In context ↗ - Mast cell (MCAS) & allergies
I find it quite helpful for MCAS
In context ↗ - Headaches & migraine
I have this too and the only thing that helps is resting
In context ↗ - Gut problems
Low histamine has helped a lot with my stomach issues
In context ↗ - Light & noise sensitivity
I’m extremely sensitive to noise now
In context ↗ - Breathlessness
I was struggling to breathe and was extremely dizzy
In context ↗ - Heart symptoms & palpitations
I’m on Ivabradine for my heart rate
In context ↗ - Anxiety & low mood
I’m still very sad about all that I’ve lost
In context ↗