Long COVID crashes after one errand; LDN helped, then a crash and relapse, still limited
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2024
In their words
- Condition: Long COVID
I am premenopausal at 34 because of the LC.
In context ↗ - At worst: Moderate
I recently asked my doc for a disabled parking permit for when I do find the energy to do groceries or other errands.
In context ↗ - Now: Relapsed
I started taking LDN and it was a game changer. It worked so well. Then I overdid it and crashed. It never worked again though
In context ↗ - Began after: COVID
But I am premenopausal at 34 because of the LC.
In context ↗
Read from 21 of their posts and comments; links to the 16 this page draws on
Summary
A person in their mid-30s with long COVID described crashing after a single errand, severe insomnia, blurry vision, neuropathy, swollen nodes and MCAS. Low-dose naltrexone at 0.5 mg worked well until they overdid it and crashed, after which it never worked again at any dose. Antihistamines no longer do much, but circulation massage boots, creatine, pumpkin pills and nattokinase helped some symptoms, and an accidental Claritin D gave a brief return of energy. They remained limited, using a disabled parking permit for errands.
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What they tried
What they credit
Also tried
Their words about each treatment
- NAC · Helped
I felt like it was helping but it gave me anhedonia :(
In context ↗ - Meta Balance (Thorne) · Helped
They don’t cure it but they really really help.
In context ↗ - Dr Teals sports menthol bath salts · Helped
They actually help with my neuropathy symptoms.
In context ↗ - LDN · Helped a lot
I started taking LDN and it was a game changer. It worked so well. Then I overdid it and crashed. It never worked again though :(
In context ↗ - yin yoga · Helped
Try yin yoga. It’s great for me.
In context ↗ - circulation massage boots · Helped a lot
I bought some circulation massage boots off the HSA website which help tremendously.
In context ↗ - pumpkin pills · Helped
I added pumpkin pills and nattokinase and voila!
In context ↗ - routine massages · Helped
I do routine massages too. They’ve been super helpful.
In context ↗ - creatine · Helped a lot
I started taking creatine and I don’t wanna jinx it but it helps a LOT.
In context ↗ - OTC sleeping pills · Helped a lot
I try not to take them every day but when I do it helps tremendously.
In context ↗ - melatonin · Worse
Melatonin makes me so groggy :(
In context ↗ - antihistamines / Claritin D · Helped a lot
I cycle the H1 protocol now and then.
In context ↗ - kombucha · Worse
I tried it before I knew what I was doing and I had a permanent headache for a week.
In context ↗
Approaches: Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|---|
| onset | long COVID onsetBut I am premenopausal at 34 because of the LC.In context ↗ | Not stated | |
| 2023-06-06 | crashed after one errand to the post officeI decided to run ONE errand to the post office yesterday so today I’m crashing.In context ↗ | Moderate | |
| 2024-01-07 | low-dose naltrexone at 0.5 mg worked wellI started on .5 and it was great.In context ↗ | Moderate | Low-dose naltrexone |
| 2024-06-13 | overdid it and crashed; LDN stopped workingThen I overdid it and crashed. It never worked again though :(In context ↗ | Moderate | |
| 2024-07-29 | accidental Claritin D gave a few good daysIt was a glimmer of my old self.In context ↗ | Moderate | Loratadine (Claritin) |
| 2024-09-15 | still ill, warning others about kombuchaI tried it before I knew what I was doing and I had a permanent headache for a week.In context ↗ | Moderate |
Adverse events
- NAC (N-acetylcysteine)“I felt like it was helping but it gave me anhedonia :(” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“Then I started to titrate up at my doctors recommendation and it just started to make me so so sleepy.” In context ↗ Side effects
- Melatonin“Melatonin makes me so groggy :(” In context ↗ Side effects
- Loratadine (Claritin)“for some reason my insomnia was through the roof. I was only sleeping 5-6 hours and not consecutive.” In context ↗ Insomnia from treatment
- Probiotics and fermented foods“I tried it before I knew what I was doing and I had a permanent headache for a week.” In context ↗ Autoimmune or inflammatory flare
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I decided to run ONE errand to the post office yesterday so today I’m crashing.
In context ↗ - Brain fog
And now, I have all these ADHD symptoms out of nowhere.
In context ↗ - Sleep problems
I’ve been suffering from the insomnia real bad.
In context ↗ - Vision problems
I couldn’t read for longer than 10 mins before my blurry vision would kick in.
In context ↗ - Neuropathy & tingling
They actually help with my neuropathy symptoms.
In context ↗ - Mast cell (MCAS) & allergies
I do have MCAS.
In context ↗ - Headaches & migraine
I had a permanent headache for a week.
In context ↗
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