How it went
Did it last?
- 7 of 47 said the benefit wore off (including the 4 who relapsed).
- 5 of 47 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 | 13% |
| Near-full | 3 | 6% |
| Substantial | 17 | 36% |
| Partial | 13 | 28% |
| Relapsed | 4 | 9% |
| No benefit | 4 | 9% |
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Moderate | 4 | 25% | |
| Severe | 18 | 22% | |
| Very severe | 9 | 33% |
16 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 mast cell (mcas) & allergies tried
- TreatmentHow it wentRecoveredFaded
- Mold avoidance / CIRS protocol7 accounts
0% 0%
- H1 antihistamines5 accounts
40% 20%
- Low-dose naltrexone5 accounts
40% 20%
- H2 blockers (famotidine, cimetidine)4 accounts
25% 0%
- Montelukast / Singulair4 accounts
0% 25%
- Meditation, yoga, breathwork4 accounts
25% 25%
- IVIG / subcutaneous Ig3 accounts
33% 0%
- Salt, fluids and compression3 accounts
0% 0%
- Ketotifen / cromolyn3 accounts
33% 33%
- Thyroid (T3, T4, NDT)3 accounts
33% 0%
- Elimination and ketogenic diets3 accounts
0% 33%
- Pycnogenol and grape seed extract3 accounts
0% 0%
- Pacing and the energy envelope3 accounts
33% 33%
Within the accounts on this page. Grey numbers rest on fewer than 10 accounts.
All 47 accounts
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Clinical trials are testing rapamycin for Long COVID and ME (Wade)
Wade, a 32-year-old in Nashville who was nearly bedbound with Long COVID, took rapamycin obtained through Healthspan, starting his first dose in March 2025. After an initial negative reaction he reported feeling great in a way he had not for months, able to…
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Hope Rooted in Biology: What Helped Us Recover from ME/CFS and Long Covid
Credits nervous system regulation. Peter was ill 5 years severe with severe ME/CFS and is described as fully recovered. Comorbid POTS, MCAS; recovered 2+ years.
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Recovery from Long COVID Shouldn't be This Exhausting
In this post, Zeest Khan describes using a beta-agonist or steroid inhaler along with unspecified pills, injections for allergic triggers, and steroids — no drug names, doses, or durations are given. In 2021 she was bedbound, unable to stand without nearly…
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List of ME/CFS Recovery and Improvement Stories (page 14 discussion)
ixikd2025 credited a broad, kitchen-sink regimen spanning stimulant, mitochondrial, antihistamine/MCAS, and lifestyle interventions (meditation, running, acupuncture) for significant improvement. With so many concurrent changes, no single component could be…
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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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Treat ME Survey Results 2
Subcutaneous immunoglobulin (SCIG), given alongside a fecal microbiota transplant, for just over a year at time of report. Before treatment he was severely unwell, underweight at 118 pounds, and unable to attend school, with comorbid POTS and mast cell…
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Enhancing the Endocannabinoid System in ME/CFS, Fibromyalgia and Long COVID: the Beta-Caryophyllene Option
Medical marijuana in the form of Cannanda CB2, a beta-caryophyllene hemp extract, was used by a patient with chronic fatigue syndrome, fibromyalgia and mast cell activation syndrome; her dose and how long she had been ill are not stated. She reports it helps…
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Several long-COVID patients report improvements from antihistamines (Rich D)
Tried Singulair (montelukast), which produced significant, though not huge, improvement within about a week, while Pepcid (famotidine) and Zyrtec (cetirizine) had no effect for them. They suggest antihistamines are most useful for long-COVID patients who…
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The Strange Syndrome: MCAS, ME/CFS, Fibromyalgia and Long COVID (comment)
Xolair (omalizumab), given as a bi-weekly injection by her GI doctor for mast cell activation syndrome. The patient, described by her father in a comment, had intense MCAS for five years alongside ME/CFS, POTS and gastroparesis, and was very severely ill:…
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Amber's Long MCAS, POTS, MCS, ME/CFS Recovery Story
Amber had digestive and allergy problems since childhood that became severe MCAS, POTS, MCS and ME/CFS after a marathon at thirty and a bad flu-shot reaction at thirty-one, leaving her homebound and fainting daily despite seeing more than a hundred doctors.…
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Long COVID/ME-CFS Patient Goes into Remission After 3 Weeks on the Antiviral Sofosbuvir
After 2 years of severe, housebound long COVID (POTS, MCAS, brain fog, gut issues, severe weight loss), this patient took standard-dose Harvoni (sofosbuvir/ledipasvir), an antiviral, for 3 weeks and reported the POTS, brain fog and MCAS symptoms resolving to…
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An ME/CFS Expert Helps a Long-COVID Patient Recover
A nineteen-year-old developed POTS and mast cell symptoms after a mild PCR-confirmed COVID infection, leaving him with a wellness score of 45 out of 100 and out of in-person classes for about fifteen months. Under Dr Peter Rowe at Johns Hopkins he was…
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Japanese Encephalitis Vaccine article comments (Li Ho's daughter)
Li Ho's daughter, as the commenter is identified, received a Johnson & Johnson COVID-19 vaccine while she had post-infection POTS with MCAS symptoms. The shot was followed by an eight-month remission in which she could exercise as she liked and eat foods…
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Impact of extended-course Paxlovid in established Long COVID (Case 2)
Case 2, a 45-year-old woman about 11 months into Long COVID with orthostatic intolerance, tachycardia, short-term memory loss, word-finding trouble, fatigue, PEM and MCAS symptoms, took a 15-day extended course of Paxlovid (nirmatrelvir/ritonavir) in…
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Anyone used Lions Mane???
Lion's Mane mushroom at 1 gram three times daily produced a rapid initial response in an ME/CFS patient: within about half an hour, severe skin and nerve burning eased by roughly 50%, and by the third day brain swelling sensations had dropped about 80% with…
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Cured of PEM
Tried black cumin seed, in both oil and seed form, after reading about cumin helping PEM in this thread. Has ME/CFS with MCAS and possible mold involvement. Reports each time she took it she felt horrible, describing a clearly negative reaction rather than…
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Has anyone followed the Neil Nathan approach and gotten better?
After six-plus years of illness since a pregnancy-related onset and nine months on Welchol without progress, she was just beginning the Neil Nathan protocol and planning mast-cell stabilizers and five different binders. No outcome is reported, as she posted…
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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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At last, there was somebody who understood. This is why I was on the phone, crying because of the kindness of these strangers
Recovered following a self-owned graded activity plan designed with Hans Petter Fundingsrud, head of department at University Hospital of North Norway (UNN) in Tromso, after the family was connected to him via former footballer Arild Berg and a Swedish…
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Health Update #4: Recovery is a %*#*&$@!
Jennifer Brea had been managing severe ME for about 8 years with Valcyte, Valtrex, Mestinon, and fludrocortisone plus mold avoidance, which had only brought her from severe to moderate; in November 2018 she underwent three surgeries over six weeks — a…
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The Temporary Recovery Stories (Michael)
Commenter Michael credited the allergy drug Singulair, taken for post-nasal drip, with months of improvement that let him sleep, exercise and do cognitive training. No further detail on illness duration or on what happened after he stopped is given.
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Grape Seed Extract, Thins/Cleans our Blood
Took Pycnogenol daily for a year in 1995, then switched to ongoing Grape Seed Extract for more than 23 years since. Describes a lifetime of allergy and sinus issues beforehand. Says a lifetime of those issues went away, and by a later update at 82 years old…
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Rituxan Number Three, Some Improvement, Still Early to Tell
Previously bed- and wheelchair-bound with complex neuroimmune disease, EDS, PID, NK-cell deficiency and MCAS, she had two Rituximab infusions in November 2018 and a third by March 2019. By the 3-month mark she reported clearly improved muscle strength and…
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Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia and POTS? (Jeff)
Jeff was young, healthy and active before a viral infection with high fever triggered symptoms that progressed until he was bedbound, unable to chew food, and diagnosed with ME/CFS, POTS and mast cell activation syndrome. Years into his decline he learned he…
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Your experiences with grape seed extract.
Grape seed extract, dose and duration not stated; how long ill and severity are also not given. He reported that it caused terrible insomnia. He wanted to keep taking it for its allergy benefits but could not tolerate the sleep disruption. He discontinued…
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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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Charcoal increased my energy immediately - what does this mean?
Unable to tolerate charcoal at all, she instead used apple pectin with oats alongside a relocation and a broader medication protocol for MCAS and prior mold-related illness, reporting only "mild improvement" that can't be cleanly attributed to any one…
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Going Under the Knife Does It.
Commenting on another patient's sinus surgery story, mentions her own long-running use of Pycnogenol starting in 1995 and then Grape Seed Extract for over 23 years since, for lifelong sinus and allergy problems. Illness duration and severity are not detailed…
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M.E., My Mold, and I: A Story of ME/CFS and Toxic Mold
Over nearly seven years of ME/CFS beginning in late summer 2010, she tried pacing with a heart-rate monitor and many supplements, including herbal antivirals, for about a year, then added neurotransmitter support (dopamine, GABA), an ATP Fuel supplement,…
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Has anyone tried "GABA" supplement- need feedback!
GABA (Solgar brand, 500mg) was tried once at bedtime by a patient who uses a motorized wheelchair and carries positive anti-GAD65 antibodies affecting glutamate-to-GABA conversion. Duration of illness is not stated in the post. Rather than helping, the…
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What Is MCAS Like?
Hydroxyzine (Atarax), dose not stated, used as a regular and rescue medication; she had been very sick for 2-3 years with severe MCAS at the time of her post. She described it as a miracle drug that lets her safely eat food and controls stage-two…
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What Is MCAS Like?
Ketotifen, dose and duration not stated; how long ill and severity are not given. He described it as being like a miracle drug when he first started taking it. He then crashed very badly. The account frames this as an example of medication sensitivity, with…
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Renewal and Relapse: An Anti-inflammatory Chronic Fatigue Syndrome Story
Diclofenac was taken as a 75 mg slow-release tablet, later increased to twice daily, after 32 years of living with ME. Both pain and fatigue improved substantially and he felt he had essentially recovered while on it. After an unspecified period the effect…
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Imunovir Update and Inosine
Imunovir (inosine pranobex), taken in cycles of roughly 2 pills a day on low weeks up to 5 pills a day on high weeks, with weekends off and periodic 2-3 month breaks, adjusted over years of use. She had ME/CFS since March 2002, about 12 years before this…
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progess report..feeling almost normal
About 1.5 years into severe illness (bedridden, lightheaded, shaking, forced to leave her home), she combined cholestyramine and Valtrex for 4 months, methylB12 injections tapering from daily to every other day over 4 months, plus ongoing sublingual…
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Probiotics and some great improvement
After being limited to "plain meat and coconut oil for a while" due to food intolerances, he drank water kefir several times a day and reports it eased a lot of his food intolerances, calling it "even more effective than any purchased (pill) probiotics."
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Probiotics and some great improvement
Took a refrigerated multi-strain probiotic sachet and by the third day found his longstanding food intolerances "improved greatly," with adverse reactions to trigger foods reduced by about 90% and digestion, skin and mood all better. He notes an older…
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Anyone recovered after discovering residential toxic mold exposure?
Living with severe mold-induced asthma and food sensitivities more than five years after her exposure, she pursued mold avoidance by living in a tent or van and discarding contaminated belongings. She reports improvement only when she manages to stay in…
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What worked for me
After 8+ years on Humira, Enbrel, Methotrexate and cortisol shots, switched to desiccated thyroid hormone (Armour, later Erfa) starting in 2003. Says her pain "disappeared," fatigue became "much much better," previous bone density decline reversed, and food…
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? for those who feel "totally healthy" out of the blue
Made dietary changes, eliminated food intolerances, and used amino acid supplements, CoQ10 and salt loading (possibly along with Emergen-C or guarana). Experienced repeated episodes of feeling "completely healthy" lasting from hours up to 3 weeks, including…
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Thirteen years after occupational exposure - Doug is well
Combined targeted supplements, dietary changes, pacing, yoga and meditation for ME/CFS that began after an occupational exposure. Specific supplement names and doses are not given in the visible excerpt. The site's framing is Doug is well after 13 years of…
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Arginine + Vitamin C for Long Covid
L-arginine at 1.5g twice daily, modeled on a published arginine-plus-vitamin-C protocol, was started by a long COVID patient who had been unable to work as a programmer since about four months after a March 2022 infection, with severe headaches, chest pain,…
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2 enlightening fasting experiences
With severe ME/CFS and food intolerances that left her able to eat little beyond rice cakes and vegetables, Countrygirl used repeated 3-day fasts during periods when her illness was worsening. Each fast moved her from bedbound up to being able to sit in an…
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Mika's full recovery from CFS, Lyme, Severe MCS
Credits brain retraining. Mika had severe ME/CFS and is described as fully recovered. Comorbid Lyme, MCS, MCAS.
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Primal Trust testimonials: Alyssa Shifre
Credits brain retraining. Alyssa was ill 3y with long COVID and reports a partial improvement. POTS, Lyme, Long COVID and MCAS combination.
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Vanessa's journey: from chronic illness to recovery
Credits trauma and somatic work, SIRPA and somatic. Vanessa was ill 4y with very-severe long COVID and reports a substantial improvement. 90% recovered; 50+ symptoms including POTS and MCAS.
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Payton Foeller's Story
She credits low-dose naltrexone (LDN, though she says it "helped somewhat, not a gamechanger"), talk therapy, brainspotting therapy, and mind-body work drawing on Dr. John Sarno's TMS framework, polyvagal theory, trauma-informed yoga and mindfulness,…