How it went
Did it last?
- 10 of 22 said the benefit wore off (including the 5 who relapsed).
- 3 of 22 needed to keep doing it 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 | 2 | 9% |
| Near-full | 3 | 14% |
| Substantial | 6 | 27% |
| Partial | 5 | 23% |
| Relapsed | 5 | 23% |
| No benefit | 1 | 5% |
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Moderate | 2 | 0% | |
| Severe | 9 | 33% | |
| Very severe | 7 | 29% |
4 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.
Specific treatments in these accounts
- TreatmentHow it wentRecoveredFaded
- IVIG / subcutaneous Ig22 accounts
23% 45%
- Rifaximin / Xifaxan3 accounts
0% 33%
Within the accounts on this page. Grey numbers rest on fewer than 10 accounts.
All 22 accounts
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Camici et al: IVIG treatment for Long COVID, a case report
This previously healthy 39-year-old man received a course of IVIG (intravenous immunoglobulin) for Long COVID after other multidisciplinary interventions had failed to help, though the forum thread does not reproduce the specific dose, number of infusions,…
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Dr Chia finds enterovirus ME/CFS patients given remdesivir remain in remission (Teodora)
A long COVID patient with associated enterovirus involvement. A Paxlovid course produced remarkable reductions in pain and improved energy, but stopping it triggered a horrendous symptomatic rebound. A later molnupiravir course gave only modest benefit by…
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Radical Rest and Beyond
The author of Encephalogirl (who signs as Michelle) treats her ME/CFS-related dysautonomia and POTS with guanfacine and low-dose Abilify (titrated from 0.5mg down to 0.25mg after migraines, then back up to 0.5mg), an increased dose of low-dose naltrexone, a…
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[Case study] CFS/ME remission story severe patient [2008]
Treeman describes his daughter reaching roughly 85% function on weekly Cuvitru immunoglobulin, with IgG levels rising from 4.7 to 9.1 and persistent shingles/IBS improving by 3 months. He says gains faded after a subsequent infection, with recovery from that…
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[Case study] CFS/ME remission story severe patient [2008]
A severe ME/CFS patient documented in a 2008 case report used a year of tapering immunoglobulin dosing alongside gut-repair supplements and antibiotic treatment for mycoplasma, progressing from severe to mild over the 12 months of treatment. Immunoglobulin…
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Case study: CFS/ME remission story severe patient (Treeman)
Treeman started weekly 7g subcutaneous immunoglobulin and after about three months reported his persistent shingles had cleared, his IBS improved and his IgG had risen from 4.7 to 9.1. He then caught an infection around the three-month mark lasting over two…
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Bedridden for 1.5 years and still getting worse - IVIG only hope
Howard, exclusively bed-bound since 2015 with post-exertional malaise since 2009, said eight hours a day of outdoor light since the previous November, aimed at raising vitamin D, brought a recent sudden though gradual improvement, alongside tart cherry…
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List of ME/CFS Recovery and Improvement Stories (page 4-5 discussion)
unicorn7 used a De Meirleir-style multi-part protocol (SIBO antibiotics, LDN, B12, subcutaneous immunoglobulin, mesalazine, plus strict pacing) to move from moderate to mild ME/CFS, and reported repeating that same moderate-to-mild recovery a second time…
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A COVID-19 Long Hauler Case Report Points to Autoimmunity and IVIG
Received IVIG at 2g/kg monthly for two months, then reduced to 1g/kg monthly because of IVIG-induced headaches, for post-COVID symptoms that began two weeks after her acute infection resolved: severe leg pain, burning in her feet and hands, blurred vision,…
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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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The Temporary Recovery Stories (Carole)
Commenter Carole Rushing described a 1987 course of immune globulin and hydroxocobalamin B12 injections that improved her condition within three weeks. She reports never recovering to that same level again after her provider switched her to generic versions…
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How fast does improvement take on Immunoglobulin?
On Hizentra subcutaneous immunoglobulin, "saw improvements... in the first couple of months" and says it "definitely helped me" across multiple symptoms, and credits it with preventing further deterioration. Still describes her overall status as "severe/very…
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The Case for IVIG Treatment in ME/CFS, Fibromyalgia, SFN and POTS
Has been on IVIG since May 2014 for an underlying immunodeficiency (CVID), though the page doesn't specify her exact dose or infusion frequency. It took at least a year before she felt better, and she initially got worse as the new antibodies fought off…
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An IVIG ME/CFS / POTS Treatment Success Story
Received a course of IVIG infusions; exact doses aren't given, but after her first infusion caused aseptic meningitis, later infusions were given more slowly over two days each, with the course running from around mid-2016 to June 2017. She had been ill…
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Norwegian Documentary "Sykt Mørkt" - 2 Very Severe ME Patients - 1 Recovers w/ SCIG
Featured in the Norwegian documentary "Sykt Mørkt," Kristine had been bedridden and essentially in darkness for five and a half years, a severity forum posters compared to the well-known very-severe case "Whitney." Weekly subcutaneous Gammanorm (SCIG)…
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Dr Park's 90% Recovery Protocol (LD-IVIG / IV Saline / ART / Nutrition) - What can we learn?
Strict Aggressive Rest Therapy -- total silence, no TV or music, complete physical and mental rest -- from a completely bedbound baseline produced full remission lasting 2-3 years: "it was completely gone... I was able to do everything I previously was…
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IVIG Who has Benefited
After a single 20-gram IVIG infusion (30g had been prescribed but insurance limited the dose), felt more energetic the very next day and had better days than any since her illness began; the effect lasted roughly two weeks with some lingering benefit through…
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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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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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IVIG and Xiflaxan: A Dr. Peterson Patient Improves
With severely swollen intestines, inability to eat or sleep without drugs and severe brain fog, he tried Xifaxan (which caused nausea and dizziness), charcoal tablets, pine cone extract and cat's claw, but reports no improvement and ongoing severe symptoms.
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IVIG and Xiflaxan: A Dr. Peterson Patient Improves
After a long history of recurrent SIBO culminating in septic shock and 15-20 diarrheal episodes a day, he took Xifaxan 200mg four times daily for 15 days alongside Florastor probiotic. Relief was "dramatic" within about 10 days, leaving no abdominal pain and…
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IVIG and Xiflaxan: A Dr. Peterson Patient Improves
A long-standing ME/CFS patient of Dr. Peterson improved markedly after resuming IVIG and taking a course of Xifaxan in late June for leaky gut/bacterial overgrowth, eventually starting full-time law school with only minor symptom-related difficulties. The…