How it went
Did it last?
- 5 of 21 said the benefit wore off (including the 2 who relapsed).
- 3 of 21 needed to keep up a treatment to stay well.
Read from what people wrote. A story that ends without a follow-up counts as lasting, so treat these as minimums.
| Outcome described | Accounts | Share |
|---|---|---|
| Full recovery | 6 | 29% |
| Near-full | 2 | 10% |
| Substantial | 3 | 14% |
| Partial | 7 | 33% |
| Relapsed | 2 | 10% |
| No benefit | 1 | 5% |
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Moderate | 5 | 20% | |
| Severe | 13 | 46% | |
| Very severe | 1 | 100% |
2 accounts don’t say how ill the person was.
Who published these accounts
Right-hand number: share describing a full or near-full recovery. Pages that sell something, and advocacy sites, tend to publish only the successes.
What people with muscle weakness tried
- TreatmentHow it wentRecoveredFaded
- IVIG / subcutaneous Ig3 accounts
100% 0%
Within the accounts on this page. Grey numbers rest on fewer than 10 accounts.
All 21 accounts
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Blood and circulation
Tried a combination of nattokinase, turmeric and bromelain for ME/CFS-related circulation problems. Had orthostatic intolerance, weakness and poor circulation beforehand. While taking the combination felt good with no orthostatic intolerance or weakness, and…
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Three clinical trials for Long COVID are testing JAK inhibitors (Jen)
Jen took the JAK inhibitor upadacitinib (Rinvoq) for 66 days starting December 2023 before stopping early due to profound weakness and paralyzing fatigue with no apparent benefit while on the drug. She had suffered from severe myalgic encephalomyelitis for…
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The Nicotine Patch: Long COVID, ME/CFS and Fibromyalgia (Patient 1)
This patient in Dr. Leitzke's case series used a 7.5 mg/24h nicotine patch applied once daily in the morning for severe weakness. She became weakness-free by day nine of treatment. The page gives no further follow-up on whether the improvement was sustained.
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Carnivore Diet Reduces Bloating
GreenEdge, who had spent the prior 2 years of a 26-year illness increasingly bed-bound, felt "totally normal" after 6 months on a carnivore diet, with better eyesight, brain function, sleep and muscle function, and managed significant physical projects…
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It is incredible to see how the mind and body is connected
She recovered by taking a Lightning Process course, after almost three years of severe, undiagnosed fatigue and progressive weakness that doctors, including her GP, a private doctor, and a doctor at Olympiatoppen, could not explain despite innumerable blood…
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3-month IVIG experience
Did two years of IVIG (July 2016 to July 2018) at 82g per infusion cycle, run at a very slow infusion speed of 40 ("but it was the fastest that I could tolerate"), for autoimmunity, MCAS and dysautonomia that included years of muscle weakness and breathing…
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How I recovered from M E Hell
Used Ashok Gupta's amygdala retraining program every day for months, giving it what she calls her very best shot. Illness duration and severity are not detailed in this post. Says in her own words that it made no difference to her PEM, weakness,…
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Did finding an infection via Armin Labs have a positive influence on your treatment & recovery
Antibiotics for Borrelia found via Armin Labs testing gave her relief from "the unrelenting horror of Lyme disease pain and malaise," but she reports the years of undiagnosed infection left lasting autoimmune-type sequelae -- severe POTS, muscle weakness,…
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The key was realising that my illness and relapses had all happened during times when I didn't have any work to do, usually after a period of stress
Recovered without any named clinic or formal programme, through self-directed changes — leaving a stressful job, moving out of London, moving in with his girlfriend and building his own projects — after doctors diagnosed post-viral fatigue and later…
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It is awfully demanding when you are seriously ill, but it is well worth the effort!
Took a Lightning Process course in November after seven years of ME/CFS, having initially been advised against it by the ME association. Before the course she was bedridden and able to walk only a few meters, with breathing difficulty, muscle weakness,…
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Instant relief with inosine plus caffeine
pattismith reports that inosine combined with caffeine relieves her muscle weakness/pain and brain fog within about an hour of taking it, and as of a follow-up three weeks later says it is "still working for me." This reads as reliable short-acting symptom…
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Pain gone with AMBROXOL
Ambroxol 15mg three times daily made 35-year-old neuropathic leg/hip pain "vanish" within two hours of the first dose, which she called "a kind of miracle" while immediately doubting it -- "hard to believe... let's see if the effect will keep going on the…
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ME/CFS, Valcyte, and me: Third time lucky
Tracy has tried valganciclovir (Valcyte) three times for ME/CFS: a six-month course in 2014 (three weeks of induction at two 450mg pills twice daily, then two pills once daily) cut short by an allergic reaction after switching to a generic mid-course; a…
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Objective CPET improvement & remission on ketogenic diet
A roughly two-week trial of the low-calorie "Blood Sugar Diet 800" eliminated this poster's daily afternoon-to-evening energy crashes, letting him "sit up all day," but he had to stop it because it caused increasing weakness - a genuine but unsustainable…
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WHAT DOES THIS POSITIVE EFFECT OF PREDNISONE MEAN?
Two months into a prednisone taper, this poster describes "breathtaking improvements" in PEM, neck/back pain, fatigue, muscle weakness, brain fog, joint pain and dizziness, while noting not everything resolved completely. She continues despite osteoporosis…
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"Clean Energy": Can a Ketogenic Diet Help with ME/CFS and Fibromyalgia?
First diagnosed with ME/CFS as a teenager in 1998 and later in remission, Dr. Courtney Craig relapsed into crushing fatigue, disturbed sleep and muscle weakness. She shifted to a ketogenic diet, getting roughly 80% of calories from fat and monitoring ketosis…
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Going Under the Knife Does It
Diane had sinus surgery, along with herbs, nutritional supplements, hormone supplements, and "serious meditation"; IVIG was also tried but had no effect. None of these interventions are given specific names, doses, or durations. She fell ill in her mid-30s…
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Equilbrant feels like helping me
Twenty-two years into illness and functioning at an estimated 30-40% of former capacity, started Equilibrant (oxymatrine) up to two capsules daily. Over the first ten days to a month reported better and longer sleep, dressing without pain medication,…
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Sinus Surgery Does the Trick
Diane underwent sinus surgery — the specific procedure isn't named — and also tried IVIG (intravenous immunoglobulin), which the page says had no effect; no other treatment names, doses, or durations are given. She had been a high-energy woman in her mid-30s…
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Muscle weakness and endurance: Solved (i hope)
Weak enough to struggle lifting a pan while on an Active B12 protocol, he began 2000mg/day of L-carnitine (fumarate/tartrate) and regained strength within 4 days. He deliberately tested the effect by stopping the supplement: weakness returned within days,…
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Miracle swim cure
Started daily mat Pilates and progressed over time to squats and weights. Says her legs "stopped feeling like quicksand," a substantial improvement in leg weakness that has continued as long as she keeps it up, though she notes it lapses if she stops and…