Severe neurological long COVID that improved on low-dose naltrexone, later relapsed
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 2 years
- Last post
- Jun 2024
In their words
- Condition: Long COVID
I’ve had long covid for 2 years this month
In context ↗ - At worst: Mild
I would force myself to go to work ( I’m a fashion stylist) and then come home and cry and shake in severe pain
In context ↗ - Now: Relapsed
I keep going back because when I do my symptoms subside. I always check in very sick
In context ↗ - Began after: COVID
I’ve had long covid for 2 years this month
In context ↗ - Says they never had: Gut problems
My worst symptom is brain on fire, not even any gut stuff.
Summary
Vale 96517 had long COVID with severe neurological symptoms, mainly a burning, tingling brain that flared after work or food, plus MCAS. Low-dose naltrexone was the only treatment credited; after four months it helped, and by mid-2023 they reported 98% recovery and were off it. By June 2024 they still had long COVID at two years and used a juice-fast detox spa for temporary relief. They spent $50,000-plus, later $60,000, on doctors and treatments.
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What they tried
What they credit
Also tried
Their words about each treatment
- low dose naltrexone · Helped a lot
I was on it for 4 months before I noticed it had helped ... Now I’m off the med and back to my life.
In context ↗ - ozone therapy · Much worse
I did ozone therapy twice. 2 rounds 3 months apart and both times it severely increased my symptoms.
In context ↗ - NAD IV · Helped
Did NAD IV, ozone therapy, hyperbaric oxygen tank, ice plunge, cryotherapy. ... All the natural treatments I did would help temporarily until the next time I would work or eat the wrong food.
In context ↗ - red light therapy machine · Helped
Purchased a red light therapy machine for my brain. ... All the natural treatments I did would help temporarily until the next time I would work or eat the wrong food.
In context ↗ - detox spa: juice fast with colonics · Helped a lot
I’ve gone to this detox spa 5 times in the past 2 years. ... within 2-3 days of being there I feel 100% better.
In context ↗ - 40 supplements a day · Helped
Took probably 40 supplements a day at one point. ... All the natural treatments I did would help temporarily until the next time I would work or eat the wrong food.
In context ↗
Approaches: Diet
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 6 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 |
|---|---|---|---|
| 2022 | Long COVID onsetI’ve had long covid for 2 years this monthIn context ↗ | Not stated | |
| March 2023 | Severe neurological long COVID; worked then cried and shook in painI would force myself to go to work ( I’m a fashion stylist) and then come home and cry and shake in severe pain.In context ↗ | Mild | |
| May 2023 | Reported 98% recovery after low-dose naltrexone; off medicationI was on it for 4 months before I noticed it had helped and by this past May I woke up one day and realized I hadn’t cried in agony over my pain in a few weeks.In context ↗ | Near normal | Low-dose naltrexone |
| June 2024 | Still very sick at two years; detox spa gave temporary reliefI’ve had long covid for 2 years this month ... I always check in very sick and honestly crying from how sick I feelIn context ↗ | Moderate |
Adverse events
- Ozone therapy and EBOO“I did ozone therapy twice. 2 rounds 3 months apart and both times it severely increased my symptoms.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
It would come every time i worked or ate.
In context ↗ - Brain fog
Also developed mass cell activation syndrome, brain fog, week joints, severe anxiety and fatigue.
In context ↗ - Neuropathy & tingling
Like a buzzing, tingling feeling.
In context ↗ - Anxiety & low mood
The anxiety is still here a bit
In context ↗
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