Bed-bound at worst with long COVID, now somewhat better after hydroxychloroquine and IVIG
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2025
In their words
- At worst: Severe
So much is better I was bed bound basically so it has improved but it seems like I’m stuck now
In context ↗ - Now: Somewhat better
I certainly haven’t crashed back to where I was before.
In context ↗ - Began after: COVID
All post covid.
In context ↗
Read from 21 of their posts and comments; links to the 15 this page draws on
Summary
A Reddit user with long COVID was bed-bound at worst, with dysautonomia, adrenaline surges, chest pain, migraines and a year of diarrhea from methane SIBO. Hydroxychloroquine brought a turn-around at about three months, easing pain and fatigue, and a blinded IVIG trial was followed by much better dysautonomia and small fibre neuropathy. Symptoms worsened again after the IVIG trial ended, though not back to their worst.
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What they tried
What they credit
Also tried
Their words about each treatment
- an infusion (for anemia) · Helped
I was anemic and had an infusion! Really helped with my shortness of breath and chest pain.
In context ↗ - counseling appt · Not said
I have decided to book a counseling appt for tomorrow and start on medications for a while to help myself heal.
In context ↗ - Manuka honey / raw honey · Helped
I invested in quality honey and had it each morning and my symptoms improved
In context ↗ - LDN · Not said
I have started LDN recently in hopes it helps that.
In context ↗ - antihistamines · Helped
when I stopped antihistamines I went down hill soooo bad !!! So I’m going back on!
In context ↗ - Plaquenil · Helped
The fatigue was improved with Plaquenil or hydroxychloroquine…. You must take for a while … I had a turn around at 3 months
In context ↗ - Buspirone · Helped
The Buspirone helps with anxiety and panic feelings
In context ↗ - IVIG · Helped a lot
I completed the IVIG and I felt amazing .. well still ill but my dysautonomia was way more manageable
In context ↗ - meditation · Not said
I’ve been doing my best to meditate every day, even if it’s just five minutes
In context ↗ - compression socks and hydration · Not said
wearing my compression socks in the morning and trying to stay on top of my hydration
In context ↗
Approaches: Other drugs and medicines
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 first step with a time is 8 months after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 |
|---|---|---|---|
| 2022 | long COVID beganAll post covid.In context ↗ | Not stated | |
| 2022 | bed-boundI have had times of being bed riddenIn context ↗ | Severe | |
| 2022-09 | relapse of morning adrenaline and anxiety, milder than beforejust had a relapse not as bad but it’s that unfathomable feeling every single morningIn context ↗ | Moderate | |
| 2023-03 | massive adrenaline and panicky feeling returnedthis massive adrenaline icky panicky feeling returnedIn context ↗ | Moderate | |
| 2023-04 | much better than bed-bound but stuck in a good-days/bad-days cycleSo much is better ... but it seems like I’m stuck now at this ok for a day or two then bad for a week or soIn context ↗ | Moderate | |
| 2023-10 | worse than at one year1.5 year Im worse then I was at a year unfortunatelyIn context ↗ | Moderate | |
| 2024-04 | significantly less pain on PlaquenilI’m two months in and I’m significantly less pain!In context ↗ | Moderate | Hydroxychloroquine / Plaquenil |
| 2024-07 | turn-around in fatigue at three monthsThe fatigue was improved with Plaquenil or hydroxychloroquine…. You must take for a while … I had a turn around at 3 monthsIn context ↗ | Moderate | Hydroxychloroquine / Plaquenil |
| 2025-06-06 | dysautonomia and neuropathy much better on IVIG trialI completed the IVIG and I felt amazing .. well still ill but my dysautonomia was way more manageableIn context ↗ | Mild | IVIG / subcutaneous Ig |
| 2025-06-06 | crashed after the IVIG stoppedUnfortunately I’m crashing now tho without the medication.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
Some days I’m absolutely Pots like with morning heart rates really high, short of breath, adrenaline, chest pain, not able to do much and migraines.
In context ↗ - Heart symptoms & palpitations
my heart palpitations really increased
In context ↗ - Anxiety & low mood
my worst symptom is like adrenaline/anxiety
In context ↗ - Headaches & migraine
not able to do much and migraines
In context ↗ - Breathlessness
Really helped with my shortness of breath and chest pain.
In context ↗ - Gut problems
Over a year of daily diarrhea and Methane SIBO
In context ↗ - Pain & fibromyalgia
I’m two months in and I’m significantly less pain!
In context ↗ - Neuropathy & tingling
my small fiber neuropathy (diagnosed before study) was a lot better as well
In context ↗
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