Long COVID for six years; symptoms held off by breastfeeding, then relapsed after stopping
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6 years
- Last post
- Sep 2026
In their words
- Condition: Long COVID
I’ve had it for five years.
In context ↗ - At worst: Severe
I’ve bounced between mild, moderate, and severe at times.
In context ↗ - Now: Relapsed
Breastfeeding kept all my symptoms at bay for the most part. When we finished, they all came back.
In context ↗ - Began after: COVID
I’ve had it for five years.
In context ↗
Summary
Gull 27338 has had long COVID for six years, losing their job and athletics in the first hard years and bouncing between mild, moderate and severe. They had two heart surgeries and are much slower getting around. Breastfeeding kept symptoms at bay for the most part until they stopped and symptoms returned. IVIG reversed their symptoms until they lost access; pyridostigmine and ivabradine help quite a bit for POTS, LDN is for fatigue—their biggest struggle—and they are moderate.
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What they tried
What they credit
Also tried
Their words about each treatment
- heart surgeries · Not said
I had two heart surgeries.
In context ↗ - IVIG · Helped a lot
The IVIG reversed my symptoms, but now I can’t find access to it, because I don’t check enough boxes.
In context ↗ - Pyridostigmine · Helped
I’m on Pyridostigmine and Ivabradine for my POTs which help quite a bit.
In context ↗ - LDN · Not said
LDN for fatigue—that’s my biggest struggle.
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. The chart starts 12 months after onset: the story doesn’t say how ill they were before that. 2 steps have no time and sit in story order between the steps around them. 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 |
|---|---|---|---|
| 2020 | long COVID beganI’ve had it for five years.In context ↗ | Not stated | |
| first two years | hardest years; lost job and athletics, severe at timesThe first two were really hard. I lost everything that made me who I was from my job to athletics and so onIn context ↗ | Severe | |
| 2022-2023 | pregnancy; best in second trimester, bed rest in thirdI did best in second trimester, was put on bed rest in the third.In context ↗ | Moderate | |
| 2023-2025 | breastfeeding kept symptoms at bayBreastfeeding kept all my symptoms at bay for the most part.In context ↗ | Mild | |
| 2025 | symptoms returned after breastfeeding endedWhen we finished, they all came back.In context ↗ | Moderate | |
| before August 2026 | IVIG reversed symptomsThe IVIG reversed my symptomsIn context ↗ | Mild | IVIG / subcutaneous Ig |
| 2026 | lost access to IVIGnow I can’t find access to it, because I don’t check enough boxesIn context ↗ | Moderate | |
| 2026-08-20 | moderate on POTS medication and LDNRight now I’m moderate.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
I’m on Pyridostigmine and Ivabradine for my POTs which help quite a bit.
In context ↗ - Neuropathy & tingling
confirmed small fiber neuropathy
In context ↗
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