Bedridden with long COVID and severe POTS, now much better with IVIG
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 11 months
- Last post
- Oct 2026
In their words
- Condition: Long COVID
I am struggling with long covid from the beginning of 2024
In context ↗ - At worst: Very severe
I was completely bedridden 2 months ago and had no hope.
In context ↗ - Now: Much better
I consider myself lucky enough to get from very severe to moderate with sometimes mild days.
In context ↗ - Began after: COVID
I was officially diagnosed with Long Covid, doctor said that all of it was triggered by Covid.
- Says they never had: Sleep problems
I don’t have huge sleep disturbances
Read from 55 of their posts and comments; links to the 21 this page draws on
Summary
A woman in Ukraine developed long COVID in early 2024 and became bedridden, vomiting daily and unable to walk to the toilet, with severe POTS. IVIG, which she paid for herself, gave relief after the first infusion; an immunostimulant then triggered a relapse, and plasmapheresis plus more IVIG helped a lot, though she is not cured and relapses without ongoing IVIG. She was moderate by late 2025, with occasional mild days but still PEM, crediting IVIG for most of the gain.
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What they tried
What they credit
Also tried
Their words about each treatment
- IVIG · Helped a lot
After first ivig infusion instantly felt better.
In context ↗ - plasmapheresis · Helped a lot
But it did have a huge positive impact on my body. Tachycardia became less, a feeling of inflammation in the veins and body disappeared.
In context ↗ - ivabradine · No change
Before ivig ivabradine and beta-blockers did not work.
In context ↗ - iron supplements · Helped
I had iron deficiency and was taking iron supplements recently. My ferritin is near 40 currently( it was 3)
In context ↗ - RIVAROXABANUM (rivaroxaban) · Not said
starting taking RIVAROXABANUM(due to high level of d-dimers)
In context ↗ - immunostimulant (immune shots) · Much worse
I also tried some kind of immune stimulants, but my immune systems became much worse and I had a relapse on it.
In context ↗ - low histamine diet · Helped
Currently for me the most helpful things are ivig, plasmapheresis and low histamine diet.
In context ↗ - dao supplements · Helped
low histamine diet, dao supplements, natural mast cell stabilizers and histamine friendly probiotics are also making their job
In context ↗ - quercitine · Helped
natural mast cell stabilizers and histamine friendly probiotics are also making their job
In context ↗ - reservatol · Helped
quercitine, rutin + luteolin or reservatol
In context ↗ - histamine friendly probiotics · Helped
histamine friendly probiotics are also making their job
In context ↗ - vitamins / supplements · Not said
I was taking supplements to close all of my deficit and to support my body during diet.
In context ↗ - camomile and stinging nettles tea · Helped
I found helpful camomile and stinging nettles tea too.
In context ↗ - amoxicillin · Helped
I felt definitely much better during taking it and afterwards for 2-3weeks.
In context ↗ - valaciclovir · Helped
I have positive experience with valaciclovir. It didn’t cure my long covid, but I had some relief.
In context ↗ - zoloft / sertraline · Worse
I became worse on zoloft.
In context ↗ - painkillers · Not said
Besides IVIG, I take mostly ivabradine, painkillers, and antihistamines.
In context ↗ - Arlevert (Cinnarizine) · Not said
Also currently I am taking Ivabradine and Arlevert(Cinnarizine - you can ask doctor smth similar) against nausea.
In context ↗
Approaches: Antihistamines & MCAS · Apheresis · Diet · Supplements
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. The chart starts 10 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| beginning of 2024 | long COVID began after CovidI am struggling with long covid from the beginning of 2024.In context ↗ | Not stated | |
| November 2024 | bedridden, vomiting daily, could not walk to the toiletI vomited every day and couldn’t walk to the toilet. Barely ate.In context ↗ | Very severe | |
| January 2025 | walking 3-5 km a day after IVIGfrom the bedridden person to person who can walk 3-5km per day I think it is a miracleIn context ↗ | Mild | IVIG / subcutaneous Ig |
| spring 2025 | relapse after an immunostimulant was prescribedthen doctor subscribed me some kind of immunostimulant, because of which I had a relapse after 4monthsIn context ↗ | Severe | |
| 2025 | plasmapheresis course then IVIG again; able to get to the clinic aloneThe progress was: first plasmapheresis I could not stand by my own, my mum helped me to get there. The last one I went on my ownIn context ↗ | Moderate | HELP apheresis / plasmapheresis |
| 2026-10-06 | moderate with sometimes mild days, still PEMI consider myself lucky enough to get from very severe to moderate with sometimes mild days.In context ↗ | Moderate | IVIG / subcutaneous Ig |
Adverse events
- “doctor subscribed me some kind of immunostimulant, because of which I had a relapse after 4months” In context ↗ Made symptoms worse
- IVIG / subcutaneous Ig“Plasmapheresis didn’t have any side effects for me unlike ivig( I also tolerate ivig mostly good, infusion speed should be really slow)” In context ↗ Side effects
- Sertraline (Zoloft)“I became worse on zoloft. I have Histamine Intolerance.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still have pem unfortunately
In context ↗ - POTS & dysautonomia
I still have pots and some other symptoms
In context ↗ - Heart symptoms & palpitations
Currently the most awful symptom is heart palpitations especially after food and in the morning.
In context ↗ - Mast cell (MCAS) & allergies
I have HI( low dao), so I am on low histamine diet mostly.
In context ↗ - Gut problems
I was bed bound, vomiting every morning
In context ↗ - Temperature regulation
subfebrile temperature, tremor
In context ↗ - Pain & fibromyalgia
severe joint pain
In context ↗ - Neuropathy & tingling
muscle stiffness, muscle tingling
In context ↗ - Vision problems
Dry eye syndrome
In context ↗ - Flu-like symptoms
I had inflamed lymph first time in my life
In context ↗
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