Miruvor

POTS medication

100 people describe trying pots medication (67 with ME/CFS, 33 with long COVID).

39%
recovered fully or nearly
39 of 99
52%
improved (substantial or partial)
51 of 99
9%
relapsed
9 of 99
0%
no benefit
0 of 99

Out of the 99 accounts with a clear outcome; 1 more don’t say how it went.

How it went

Did it last?

  • 25 of 100 said the benefit wore off (including the 9 who relapsed).
  • 11 of 100 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 describedAccountsShare
Full recovery3030%
Near-full99%
Substantial3232%
Partial1919%
Relapsed99%
No benefit00%
Outcome unclear1—

By how ill people were

Severity at worstHow it wentnRecovered
Mild1100%
Moderate1030%
Severe4945%
Very severe2330%

17 accounts don’t say how ill the person was.

Who published these accounts

Sells a treatment or program37 accounts
75%
Recovery advocacy site3 accounts
33%
Independent (blog, forum, news)60 accounts
18%

37% of these accounts are on pages that sell this treatment or a program around it. Those pages publish their successes; compare the independent row.

Specific treatments in these accounts

Within the accounts on this page. Grey numbers rest on fewer than 10 accounts.

Side effects and harms people mentioned

Found by scanning the summaries for side-effect language, so this list is incomplete and may include a mention that isn’t about POTS medication itself. Read the story before drawing conclusions.

  • Side effectsLauren used nicotine patches for Long COVID, starting with half of a 7mg patch (3.5mg) worn intermittently for 7-10 days at a time with a few days off, then shifting in October 2025 to near-daily half-patch use for about two months, before cutting back in late December 2025 to just one-eighth of a 7mg patch daily after side effects appeared.
  • Side effectsnescio13 credits a beta-blocker ("basic blood pressure reduction medication," no specific drug name or dose given) with ending their migraine-like long covid symptoms, though as a side effect it also brought back their asthma.
  • Withdrawal problemsThey had lived with long covid for about four years, severe enough to require nearly complete social withdrawal and tightly controlled environments.
  • Made symptoms worseAfter a severe EBV flare in February 2017 that made cardiac symptoms - low blood pressure, low heart rate, shortness of breath, "heart palpitations like mad" - much worse on top of 5 years of CFS, started Famvir (titrated up to 500mg twice daily), added quarter-tablet Mestinon four times daily, then Celebrex 100mg twice daily.
  • HospitalisationAfter 28 years of never being able to exercise despite seeing top ME/CFS specialists worldwide, and a recent low point involving surgeries, ER visits and a drug reaction, this patient started 180mg/day Mestinon and within weeks felt an urge to run for the first time in decades.

All 100 accounts

  • Has anyone achieved remission or recovery from treatment by any doctor?

    Partial ME/CFS Effect faded forums.phoenixrising.me Aug 2026

    Took 25mg of spironolactone plus 4.5mg of low-dose naltrexone (LDN), while already on physiologic cortisol replacement for non-functioning adrenals, following the approach from the Campo and Taylor 2021 clinical trial. The page does not state how long they…

  • Brain retraining is nervous system regulation

    Near-full Long COVID SevereIll 5 years amythetonic.substack.com · sells Jul 2026

    Amy credits the "CFS Recovery" nervous-system-regulation program with turning her case around, alongside daily red-light therapy (about 10 minutes, at least four mornings a week, using a box she bought roughly three years ago) and work with a therapist who…

  • Start here. You shouldn't have to do this alone.

    Substantial Long COVID SevereIll 4 years longcovidmd.substack.com Jul 2026

    Zeest Khan's post mentions she underwent a hyperbaric chamber treatment, a sleep study, and an unnamed surgical intervention around 2021, but gives no details on protocols, doses, or durations for any of them beyond photo captions. She pushed through…

  • 220: The 1% Shift That Changed Her Recovery (ME/CFS, Long Covid, POTS) - Dr. Crista Taylor, DPT

    Full recovery Long COVID buzzsprout.com · sells Apr 2026

    Credits brain retraining. Crista had long COVID and is described as fully recovered. DPT; both ME/CFS and long covid named, plus POTS.

  • On the road to recovery from Long Covid

    Partial Long COVID SevereIll 1.83 yearsEffect faded thewellnessaesthetic.substack.com Apr 2026

    Lauren combined nicotine patches at one-eighth of a patch daily through December with a broad daily supplement regimen, including CoQ10 100mg, Ionic Fulvic Acid 1ml three times a day, Hawthorn Leaves 5ml, and products like Adrenal Complex, Adreno Active,…

  • My Recovery from Long COVID PEM Part 2: Microclots

    Substantial Long COVID SevereIll 3 yearsEffect faded longcovidbegone.substack.com Feb 2026

    Christy was prescribed the anticoagulant apixaban and the antiplatelet clopidogrel in June 2023 (omitting the aspirin normally used in triple therapy due to stomach sensitivity), continuing for 4 to 5 months after microclots and hyperactivated platelets were…

  • My update to nicotine patch usage for Long Covid recovery

    Partial Long COVID ModerateIll 1.5 years thewellnessaesthetic.substack.com Jan 2026

    Lauren used nicotine patches for Long COVID, starting with half of a 7mg patch (3.5mg) worn intermittently for 7-10 days at a time with a few days off, then shifting in October 2025 to near-daily half-patch use for about two months, before cutting back in…

  • Case Report: mitochondrial insufficiency and cholinergic failure in post-vaccination LC

    Substantial Long COVID SevereIll 9 months s4me.info 2026

    This 80-year-old professor was given Mestinon (pyridostigmine bromide) 90 mg daily for balance problems, which brought minimal benefit over two months, and then a mitochondrial support protocol targeting NAD+ repletion, electron transport chain function and…

  • 170: Avoid Common ME/CFS & Long Covid Blind Spots - Ellen Alden

    Outcome unclear Long COVID buzzsprout.com · sells Oct 2025

    Credits brain retraining. Ellen had long COVID and is listed among the recovery accounts. Both conditions named; unclear which is hers.

  • Vyvgart brought us back to life (Michaelene)

    Relapsed Long COVID SevereEffect faded thesicktimes.org Oct 2025

    Michaelene was on Vyvgart (efgartigimod) for five months in the trial's open-label phase and had improved enough that she no longer met criteria for POTS when the trial was abruptly canceled. She had been severely disabled before treatment. After the trial…

  • Vyvgart brought us back to life (Nicole)

    Relapsed Long COVID SevereEffect faded thesicktimes.org Oct 2025

    Nicole Barrick, a nurse who contracted COVID while working on a COVID unit, received weekly Vyvgart (efgartigimod) infusions, and after six months in the trial's open-label phase she no longer met the clinical criteria for POTS on tilt-table testing, with…

  • Vyvgart brought us back to life (Judith)

    Relapsed Long COVID Very severeEffect faded thesicktimes.org Oct 2025

    Judith was on Vyvgart (efgartigimod) for five months during the trial's open-label phase, though no specific dose is given. Previously largely housebound, she improved enough to return to work, travel to a friend's wedding, and no longer meet clinical…

  • Vyvgart brought us back to life, but the Long COVID trial was canceled

    Relapsed Long COVID Very severeEffect faded thesicktimes.org Oct 2025

    Roman White received weekly infusions of Vyvgart (efgartigimod) during the open-label phase of a Long COVID trial; no specific dose is given beyond the weekly infusion schedule. Previously a firefighter left unable to work, he improved dramatically on the…

  • My Recovery from Long Covid PEM: Part 1

    Substantial Long COVID SevereIll 2.5 years longcovidbegone.substack.com Sep 2025

    In summer 2023 Christy Collins began four months of dual anticoagulant/antiplatelet therapy with apixaban (Eliquis) for long COVID PEM; a planned spring 2024 "three-pillar" protocol (mitochondrial and metabolic support, antivirals, and immune stimulants) is…

  • How I got in remission/cured my ME/CFS

    Full recovery ME/CFS SevereIll 3 years forums.phoenixrising.me Aug 2025

    Ali_Mardiyev, disabled for 1.5 years with POTS/dysautonomia/severe fatigue/PEM, layered a stellate ganglion block with beta-blocker, a testosterone course, several psychiatric medications, intermittent fasting and a slow graded-exercise ramp starting April…

  • What Finally Helped After 25 Years of Chronic Pain, ME/CFS and POTS (Fiona Symington)

    Full recovery ME/CFS Ill 25 years buzzsprout.com · sells Jul 2025

    Credits brain retraining. Fiona was ill 25 years with ME/CFS and is described as fully recovered. Comorbid chronic pain, POTS.

  • Hope Rooted in Biology: What Helped Us Recover from ME/CFS and Long Covid

    Full recovery ME/CFS SevereIll 5 years healwithliz.com · sells Jun 2025

    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.

  • Hope Rooted in Biology: What Helped Us Recover from ME/CFS and Long Covid

    Full recovery ME/CFS ModerateIll 5 years healwithliz.com · sells Jun 2025

    Credits somatic tracking and emotional expression. Jake was ill 5 years with moderate ME/CFS and is described as fully recovered. Comorbid long covid and POTS.

  • Hope Rooted in Biology: What Helped Us Recover from ME/CFS and Long Covid

    Full recovery ME/CFS SevereIll 4.5 years healwithliz.com · sells Jun 2025

    Credits CFS Health program, yoga nidra and breathwork. Jill was ill 4.5 years with severe ME/CFS and is described as fully recovered. Comorbid POTS.

  • Hope Rooted in Biology: What Helped Us Recover from ME/CFS and Long Covid

    Full recovery ME/CFS SevereIll 5 years healwithliz.com · sells Jun 2025

    Credits brain retraining, somatic and trauma therapy. Christine was ill 5 years (4 bedbound) with severe ME/CFS and is described as fully recovered. Comorbid POTS; recovered 2 yrs at writing.

  • This surgery fuses people's skulls to their spines to treat ME-overlapping condition

    Partial ME/CFS SevereIll 8 years thesicktimes.org Apr 2025

    Jen Brea underwent craniocervical fusion performed by Dr. Paolo Bolognese, using two 2.5-centimeter titanium bars and six screws to fuse her top two vertebrae to her skull and lift her head by 4 millimeters, followed about two weeks later by tethered cord…

  • Recovery from Long COVID Shouldn't be This Exhausting

    Substantial Long COVID SevereIll 4 years longcovidmd.substack.com Mar 2025

    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…

  • Long Covid Diaries, No. 49: the end.

    Full recovery Long COVID SevereIll 4 years digressionsimpressions.substack.com Feb 2025

    nescio13 credits a beta-blocker ("basic blood pressure reduction medication," no specific drug name or dose given) with ending their migraine-like long covid symptoms, though as a side effect it also brought back their asthma. They had lived with long covid…

  • How I Overcame Post-Covid POTS

    Full recovery ME/CFS ansrewire.com · sells Jan 2025

    Credits brain retraining. An unnamed patient had ME/CFS and is described as fully recovered. POTS-focused; ME/CFS overlap unclear.

  • Mollie's ME/CFS and POTS Recovery Success with ANS REWIRE

    Full recovery ME/CFS SevereIll 5 years ansrewire.com · sells Jan 2025

    Credits brain retraining and trauma and somatic work. Mollie was ill 5y with severe ME/CFS and is described as fully recovered. Same story as the cfsunravelled family-psychotherapy post.

  • Hyperbaric Oxygen Therapy Turns Mathew's Long COVID / ME/CFS / POTS Around

    Full recovery ME/CFS SevereIll 4 years healthrising.org · sells Dec 2024

    Mathew developed long COVID with ME/CFS and POTS after a COVID infection in February 2020 and cycled through severe crashes for four years, at times 20 hours a day in bed, despite midodrine, low-dose naltrexone, Abilify and Paxlovid. In late 2023 he…

  • Drugs Get Mathew Most of the Way and Hyperbaric Oxygen Does the Rest

    Full recovery ME/CFS Very severeIll 4 yearsEffect faded healthrising.org · sells Jun 2024

    Dr Mathew Robinson, a university professor, developed long COVID with ME/CFS and POTS after infection in February 2020 and spent 20-22 hours a day in bed. Midodrine, low-dose Abilify and low-dose naltrexone under Bateman Horne Center care brought him to…

  • Radical Rest and Beyond

    Partial ME/CFS Severe encephalogirl.substack.com May 2024

    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…

  • Daughter's recovery details

    Substantial ME/CFS SevereIll 2 years forums.phoenixrising.me · sells Jul 2023

    The regimen for Celandine's daughter included daily liquorice root powder and salt in plant milk, weekly-then-tapering Perrin Technique osteopathy (including breast lymphatic massage), the POTS medications ivabradine and midodrine with salt tablets and 2…

  • Amber's Long MCAS, POTS, MCS, ME/CFS Recovery Story

    Substantial ME/CFS SevereIll 30 years healthrising.org · sells Jun 2023

    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.…

  • Long COVID/ME-CFS Patient Goes into Remission After 3 Weeks on the Antiviral Sofosbuvir

    Substantial Long COVID SevereIll 2 yearsEffect faded forums.phoenixrising.me Apr 2023

    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…

  • An ME/CFS Expert Helps a Long-COVID Patient Recover

    Near-full Long COVID ModerateIll 2.5 years healthrising.org Apr 2023

    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…

  • A Patch On It: Melissa's Cerebral Spinal Fluid Leak ME/CFS Recovery Story

    Near-full ME/CFS Very severeIll 3.5 years healthrising.org Apr 2023

    Melissa's health declined after a jarring spinal injury in 2019 and she spent a year bedbound with extreme cognitive impairment, having been misdiagnosed with tickborne illness, narcolepsy and POTS. A CT myelogram finally found a spinal fluid leak, and five…

  • Japanese Encephalitis Vaccine article comments (Li Ho's daughter)

    Relapsed Long COVID ModerateEffect faded healthrising.org Mar 2023

    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…

  • Michelle

    Substantial Long COVID Very severeIll 6 months longcovidcured.com Jan 2023

    Michelle saw more than ten specialists and tried extensive medical treatment: beta blockers, the migraine drug Ubrelvy, meclizine for dizziness, two rounds of prednisone, B12 shots for neuropathy, and Paxlovid taken months after her initial infection, plus…

  • Mestinon + Famvir - whoa!

    Relapsed ME/CFS Effect faded forums.phoenixrising.me 2023

    On Famvir 1500mg/day plus Celebrex 200mg twice daily, had "nearly 2 years" of improvement after an initially rough adjustment period, then suffered a "major EBV relapse" in February/March. Offers a longer-horizon counterpoint to BadBadBear's account in the…

  • Impact of extended-course Paxlovid in established Long COVID (Case 11)

    Partial Long COVID Very severeIll 3 years pmc.ncbi.nlm.nih.gov 2023

    Case 11, a 33-year-old woman roughly three years into severe Long COVID/ME since March 2020, initially bedridden and dependent on caregivers and later "mostly housebound," had a 5-day Paxlovid course in May 2022 that brought significant improvement, ending…

  • Impact of extended-course Paxlovid in established Long COVID (Case 7)

    Relapsed Long COVID SevereIll 11 monthsEffect faded pmc.ncbi.nlm.nih.gov 2023

    Case 7, a 29-year-old man about 10 months into Long COVID/ME since July 2022 with extreme fatigue, PEM, tachycardia, POTS, persistent headache, brain fog, chest pain and shortness of breath, took a 15-day extended Paxlovid course in May 2023 while also on…

  • Lucie's Surprisingly Simple Road to Recovery

    Full recovery ME/CFS ModerateIll 13 years healthrising.org Nov 2022

    Lucie had ME/CFS for over a decade, ill enough to cut back to part-time work and give up cycling. Under Dr Rowe's care she combined naproxen taken with salt water, compression stockings and pacing. She reports full recovery with no restrictions, while noting…

  • Lucie's Surprisingly Simple Chronic Fatigue Syndrome Recovery Story

    Near-full ME/CFS MildIll 7 years healthrising.org Nov 2022

    Lucie became ill with relatively mild but disabling ME/CFS around 2011, unable to exercise and with her work and social life sharply curtailed. Following pacing advice and an orthostatic-intolerance protocol of high salt and 2.5 litres of water daily, she…

  • Christoph's Long COVID Recovery Story

    Full recovery Long COVID Very severeIll 1.5 years cfsrecovery.com · sells Aug 2022

    Credits brain retraining. Christoph was ill 18mo with very-severe long COVID and is described as fully recovered. POTS heart rate 150+; symptoms are on your path framing.

  • Robyn Dale

    Near-full Long COVID Very severeIll 5 months positivelycovid.org Jun 2022

    Robyn's treatment combined short courses of propranolol, zopiclone and diazepam early on with medium-term amitriptyline for insomnia, mood and muscle spasms, alongside daily walking, yoga, meditation and graded activity. She crashed severely in December 2021…

  • Robyn Dale

    Substantial Long COVID Very severeIll 5 monthsEffect faded longcovidcured.com May 2022

    Robyn was prescribed short-term propranolol for heart arrhythmia and palpitations, at doses that were increased despite her objections, short-term zopiclone and diazepam to help her rest, and medium-term amitriptyline for insomnia, mood, and to stop cluster…

  • Lena Uses the DNRS Program to Fully Recover From Post-COVID

    Full recovery Long COVID SevereIll 2 months retrainingthebrain.com · sells 2022

    Credits brain retraining. Lena was ill 2mo with severe long COVID and is described as fully recovered. POTS and tachycardia; claims complete healing.

  • Bring It On!

    Partial Long COVID SevereIll 1.75 yearsEffect faded longcovid.physio Dec 2021

    Helen manages her long COVID with about 8 unnamed tablets each morning plus more through the day, along with increased fluid and salt intake, supine exercises, and heart rate monitoring for POTS — no specific drug names or doses are given. She had a mild…

  • Kristin recovers from 6 years of ME/CFS POTS and MCS, PTSD and Bulimia

    Substantial ME/CFS SevereIll 6 yearsEffect faded cfsunravelled.com · sells Oct 2021

    Credits trauma and somatic work and brain retraining. Kristin was ill 6y with severe ME/CFS and reports a substantial improvement. Reached remission, relapsed, then rebuilt via deeper trauma work.

  • Journey Out of Long Covid: Living a Fantastic Life Again

    Full recovery Long COVID SevereIll 1.25 years lightningprocess.com · sells Jul 2021

    Credits the Lightning Process. Marion was ill 15mo with severe long COVID and is described as fully recovered. PoTS resolved in 48 hours; resumed choirs and gardening.

  • Has Bruce Patterson Cracked Long COVID?

    Partial Long COVID Ill 1.42 years healthrising.org · sells Jul 2021

    Sam started Bruce Patterson's long-COVID treatment protocol, though the specific drugs are not named in the comment, after 17 months of illness marked by shortness of breath, rashes, an elevated heart rate and POTS symptoms. The first four to five days were…

  • ME/CFS in remission from Mold Avoidance

    Partial ME/CFS forums.phoenixrising.me May 2021

    Despite comorbid craniocervical instability, mold avoidance "still helped" and affected symptoms like sound sensitivity and POTS, which he calls "the most impressive [treatment] I've done YET." He says he never achieved full remission from mold avoidance…

  • Oda Shares Her POTS and ME/CFS Recovery After 10 Years Using ANS REWIRE

    Full recovery ME/CFS SevereIll 10 years cfsunravelled.com · sells Apr 2021

    Oda's recovery combined daily thyroxine for diagnosed Hashimoto's hypothyroidism with the ANS REWIRE program (daily meditation and "postural rewiring" videos starting July 2017), gentle home yoga via the Yoga Studio app, one session of Thomas Hanna-method…

  • I replace ALL my hormones. This brought me back to life.

    Substantial ME/CFS Severe forums.phoenixrising.me Oct 2020

    thingsvarious systematically replaced testosterone, cortisol, thyroid, growth hormone and aldosterone after years of "nightmare"-level fatigue, largely managing it himself because, in his words, "many endocrinologists are shit." He says his energy moved from…

  • Long-Term Daily mHBOT and Full Recoveries w/ Ongoing Maintenance

    Substantial ME/CFS Moderate forums.phoenixrising.me Jul 2020

    used_to_race combined daily hydroxychloroquine with mHBOT sessions 3-4 times a week for 45-90 minutes, plus fludrocortisone for POTS, and reported bad days becoming much less frequent, with capacity for 76-mile cycling weekends and full-time work plus…

  • Health Update #4: Recovery is a %*#*&$@!

    Substantial ME/CFS Very severeIll 8 years jenbrea.medium.com Feb 2020

    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…

  • Jennifer Brea's Recovering Story: the Spinal Series Pt II (Mattie)

    Substantial ME/CFS SevereIll 9 years healthrising.org May 2019

    The same post describes Mattie, a web developer in the Netherlands whose ME/CFS began in 2010 with a gradual decline to being mostly bedridden. Three months after craniocervical and atlantoaxial fusion surgery she was no longer mostly bedridden and her POTS,…

  • Jennifer Brea's Amazing ME/CFS Recovering Story: the Spinal Series Pt II

    Near-full ME/CFS Very severeIll 8 years healthrising.org May 2019

    Jennifer Brea, the Unrest filmmaker, had been wheelchair-dependent for nearly all of her eight-year illness, at her lowest with breathing difficulties, flaccid limbs, numbness and speech problems. About six months before this post she underwent spinal…

  • Kiki overcomes POTS, MECFS with Chronic Lyme after 10 years of illness

    Full recovery ME/CFS SevereIll 10 years cfsunravelled.com · sells May 2019

    Credits diet, chiropractic and IV therapy. Kiki was ill 10y with severe ME/CFS and is described as fully recovered. Jugular venoplasty surgery plus NUCCA chiropractic.

  • Jennifer Brea's Chronic Fatigue (ME/CFS) Recovering Story

    Near-full ME/CFS SevereIll 8 years healthrising.org May 2019

    Underwent spinal surgeries over several weeks to correct craniocervical instability (CCI) and tethered cord syndrome, wore a neck collar (Philadelphia or Aspen Vista) during recovery, and found the drug Mestinon (pyridostigmine) helpful for symptoms. She had…

  • Sirin Gnadeberg Shares How She Cured Her ME/CFS and POTS

    Full recovery ME/CFS SevereIll 5 years cfsunravelled.com · sells Apr 2019

    Sirin Gnadeberg added salt to her drinking water starting in April 2016, which significantly improved her POTS symptoms, then took 16 weeks of antibiotics after a Lyme specialist found elevated antibodies to Bartonella, Chlamydia and Mycoplasma (despite…

  • Could Craniocervical Instability Be Causing ME/CFS? (Jennifer)

    Partial ME/CFS Very severeIll 8 yearsEffect faded healthrising.org Feb 2019

    The same post introduces filmmaker Jennifer Brea, describing severe neurological decline including respiratory-arrest episodes after a surgery-triggered relapse, leading to a diagnosis of craniocervical and atlantoaxial instability. She underwent…

  • Could Craniocervical Instability Be Causing ME/CFS, Fibromyalgia and POTS? (Jeff)

    Full recovery ME/CFS Very severeIll 10 years healthrising.org Feb 2019

    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…

  • Did finding an infection via Armin Labs have a positive influence on your treatment & recovery

    Partial ME/CFS Severe forums.phoenixrising.me Jan 2019

    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,…

  • More Fatigue with Famciclovir, I Must Continue

    Partial ME/CFS Severe forums.phoenixrising.me Jan 2019

    Mel9, mostly bedbound with heavy legs and a POTS-type heart-rate response to standing, took 30mg (half a tablet) of Mestinon every four hours and became able to manage a 4km walk plus a further short activity after resting, with reduced POTS symptoms and…

  • Mollie recovers rapidly after 4.5 years of MECFS and POTS

    Full recovery ME/CFS Very severeIll 4.5 years cfsunravelled.com · sells Dec 2018

    Credits brain retraining and diet. Mollie was ill 4.5y with very-severe ME/CFS and is described as fully recovered. Psychotherapist; same testimonial also on ansrewire.com.

  • The Case for IVIG Treatment in ME/CFS, Fibromyalgia, SFN and POTS

    Substantial ME/CFS Very severe healthrising.org Sep 2018

    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…

  • An IVIG ME/CFS / POTS Treatment Success Story

    Partial ME/CFS Very severeIll 9 yearsEffect faded healthrising.org Aug 2018

    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…

  • Does Valtrex work this fast?

    Substantial ME/CFS Ill 9 yearsEffect faded forums.phoenixrising.me Mar 2018

    On Valtrex for comorbid ME/CFS and POTS (dose not given), took about five weeks to see the major effect: crashes became "less severe and did not last long," she was "waking up refreshed," and her POTS "resolved" by the five-week mark. Trajectory beyond that…

  • Moderate success with hookworms/helminthic therapy after 2.5 yrs

    Partial ME/CFS SevereIll 15 yearsEffect faded forums.phoenixrising.me Dec 2017

    After 15 years of severe ME/CFS/FM (about 85% housebound, severe PEM, chronic muscle pain, borderline POTS, brain fog), tried hookworm therapy, titrating from 5 up to 25 worms before settling on a maintenance dose of 10. Over 2.5 years reports reduced…

  • Mestinon + Famvir - whoa!

    Substantial ME/CFS SevereIll 5 years forums.phoenixrising.me Oct 2017

    After a severe EBV flare in February 2017 that made cardiac symptoms - low blood pressure, low heart rate, shortness of breath, "heart palpitations like mad" - much worse on top of 5 years of CFS, started Famvir (titrated up to 500mg twice daily), added…

  • Desmopressin Does it For ME/CFS/POTS patient

    Full recovery ME/CFS SevereIll 4 years healthrising.org · sells Feb 2017

    An unnamed patient with severe ME/CFS and POTS was mostly homebound for several years before starting oral desmopressin under Dr Lucinda Bateman's care, alongside pacing and treatment of sleep, pain and anxiety. Within a year the patient reported complete…

  • Calmness & increased functionality from Propranolol

    Partial ME/CFS forums.phoenixrising.me Jan 2017

    At a low dose of propranolol (5mg twice daily), this poster reports reduced heart-rate spikes and better cardiovascular stability, saying "my feeling is the upside...is worth it." Kept deliberately modest - ongoing benefit, not a cure claim, with no…

  • Calmness & increased functionality from Propranolol

    Partial ME/CFS SevereEffect faded forums.phoenixrising.me Jan 2017

    Propranolol initially brought this poster substantial relief, calling it "life-changing to a certain extent" for cutting the fight-or-flight response, brain fog and sleep-onset problems. Several months in, though, he reports the effect fading, needing higher…

  • Iron Man: How One Young Person Recovered From POTS / ME/CFS

    Near-full ME/CFS SevereIll 1.67 years healthrising.org Nov 2016

    Jack Schlanger fell severely ill with POTS and ME/CFS-like symptoms at 13 after an infection, unable to attend school full-time with near-constant stomach pain and exercise intolerance. Diagnosed with iron deficiency contributing to his POTS, he was treated…

  • Verapamil, a calcium-channel blocker, eases my symptoms

    Substantial ME/CFS Moderate forums.phoenixrising.me Sep 2016

    Verapamil ER, a non-dihydropyridine calcium channel blocker, was started at 120mg and later raised to 180mg extended-release, taken each evening for several years by the time of posting. Illness duration before starting is not stated. He reports night sweats…

  • Whats FINALLY worked for me.

    Substantial ME/CFS SevereIll 8 years forums.phoenixrising.me Jul 2016

    After eight years severe enough that she could stand only minutes and needed help toileting, and with co-diagnoses of babesiosis, candidiasis, leaky gut and POTS, this poster spent about a year on IV/oral artemisinin and curcumin, 4.5mg LDN and 450mg/day…

  • Mestinon, Chronic Fatigue, Vagus Nerve Stimulation and Exercise

    Substantial ME/CFS Very severeIll 28 years healthrising.org Jun 2016

    After 28 years of never being able to exercise despite seeing top ME/CFS specialists worldwide, and a recent low point involving surgeries, ER visits and a drug reaction, this patient started 180mg/day Mestinon and within weeks felt an urge to run for the…

  • Mayo Protocol plus Venofer Iron Infusion Helps Teenager Recover

    Near-full ME/CFS SevereIll 1.67 years healthrising.org · sells May 2016

    A teenager named Jack developed ME/CFS and POTS with an acute flu-like onset and was mostly homebound for about 20 months, as told by his father. Mayo Clinic's POTS rehabilitation protocol, Venofer iron infusions for low ferritin, midodrine, salt and water…

  • how did you get out of "bedridden level" ??(even if you are still sick)

    Substantial ME/CFS Very severe forums.phoenixrising.me May 2015

    Reports going from bedridden to walking a mile and a half the next day after starting Florinef, Midodrine and a beta-blocker for orthostatic symptoms. Frames it as trial-and-error ("the trick is to try things") with no dose, duration or durability detail given.

  • Doing So Well On Modified Cowden Protocol

    Substantial ME/CFS SevereIll 19 yearsEffect faded forums.phoenixrising.me Apr 2015

    Nineteen years after a suspected tick bite left her unable to walk more than 10-20 minutes, a UK woman in her late 60s started a modified Cowden herbal protocol (Banderol/Cumanda, Andrographis 4/day, Japanese Knotweed 12/day for about three months, teasel…

  • Stinging Her Way Back to Health

    Full recovery ME/CFS Effect faded healthrising.org Apr 2015

    Nancy developed chronic fatigue syndrome in 1994 and experienced a relapse along the way. She credits bee venom therapy, which she says is not a cure but helped her get her life back, together with vitamin B12, hypnotherapy, guided meditation and…

  • Clindamycin is a miracle drug for my CFS/ME/POTS/Fibromyalgia symptoms

    Substantial ME/CFS Severe forums.phoenixrising.me Mar 2015

    Took clindamycin 300mg three times daily for 10 days on two separate occasions, once for a tooth infection and once for a throat infection. Reported it helped "tremendously with ALL of my diagnoses" (CFS, POTS, fibromyalgia and others), to the point of not…

  • specific type of digestive enzyme has helped a lot

    Substantial ME/CFS ModerateIll 4 years forums.phoenixrising.me Jun 2013

    After four years on hydrocortisone for POTS-related symptoms, she began taking four Renew Life Digest More Ultra digestive enzyme capsules with each meal. She was then able to wean her hydrocortisone from 25mg to 12.5mg without her usual dizzy spells, and…

  • Abilify and Energy

    Relapsed ME/CFS ModerateEffect faded forums.phoenixrising.me Dec 2012

    erist, who described mornings as swimming up "from the bottom of a dark lagoon," took low-dose Abilify (0.5-1mg) and got more energy, better appetite and easier waking, alongside some agitation and a wired/tired feeling similar to methylation-protocol…

  • My Story - Dan Neuffer's ME/CFS Fibromyalgia POTS Recovery

    Full recovery ME/CFS SevereIll 5 yearsEffect faded cfsunravelled.com · sells Oct 2012

    Dan Neuffer's page gives only general categories of treatment rather than specific drugs or doses: he says he "healed my gut and changed my diet" under a doctor's guidance, used unnamed supplements to support metabolism, detoxification and oxidative stress,…

  • My Valcyte pilgrimage

    Substantial ME/CFS SevereIll 2 years forums.phoenixrising.me Aug 2012

    About two years into illness with a persistent CMV infection (titer 107 against a normal range of 0-18), severe brain fog, extreme fatigue needing 12+ hours of sleep, and tachycardia and breathing trouble so bad she "felt like I was dying," started Valcyte…

  • Cured Myself After 4 Years of CFS

    Full recovery ME/CFS SevereIll 4 years forums.phoenixrising.me · sells May 2012

    Over about four years and more than $50,000 on doctors and supplements, this poster went from lying "almost paralyzed" to calling himself cured, crediting a stack that included DHEA (100mg/day, 200mg on exercise days), Florinef for low aldosterone,…

  • 3 Things that Help the Most!!

    Substantial ME/CFS forums.phoenixrising.me Nov 2011

    Manages orthostatic intolerance with midodrine, fludrocortisone, time-released potassium, salt tablets, 3 liters of water a day, deliberately reclining to rest, and a folding cane/stool for standing tasks. Says this combination substantially improves her…

  • Hormones: Some women go into remission during pregnancy, can we recreate w hormones?

    Relapsed ME/CFS Effect faded forums.phoenixrising.me Jun 2011

    Used a high-dose estriol cream (6-8mg/day) and says it was "like a miracle for me when I started it," giving dramatic relief from nervous-system symptoms, POTS and depression. The effect later stopped working after she changed her thyroid medication, so the…

  • Successful Treatment of CFS - Oriental Medicine

    Partial ME/CFS forums.phoenixrising.me May 2011

    Calls a Chinese herbal mixture "the best medical intervention I have ever taken" for POTS and CFS, but gives no detail on the formula, dose, illness duration/severity, or how large or durable the benefit was, so the claim is notable but thinly documented.

  • List of ME/CFS Recovery and Improvement Stories (thread, page 10)

    Substantial ME/CFS Very severe forums.phoenixrising.me

    batty_ash03 went from housebound and mostly bedbound to mild, with PEM only from cardio exercise, within two months of starting Mestinon 45mg three times a day. By 4-5 months the gains were sustained, and she had added strength training and part-time work…

  • Miguel's full recovery from severe ME/CFS and POTS

    Full recovery ME/CFS Severe healwithliz.com · sells

    Credits brain retraining. Miguel had severe ME/CFS and is described as fully recovered. Likely same Miguel Bautista as buzzsprout ep115.

  • Jo Thomas' POTS & chronic fatigue recovery story

    Full recovery ME/CFS healwithliz.com · sells

    Credits holistic and western medicine. Jo had ME/CFS and is described as fully recovered. Comorbid POTS; combined medical+holistic approach.

  • Maria - Long Covid Recovery Story

    Substantial Long COVID Very severe cfsrecovery.com · sells

    Credits brain retraining. Maria had very-severe long COVID and reports a substantial improvement. Bedbound with POTS and 50+ rotating symptoms; now rock climbing.

  • Primal Trust testimonials: Alyssa Shifre

    Partial Long COVID Ill 3 years primaltrust.org · sells

    Credits brain retraining. Alyssa was ill 3y with long COVID and reports a partial improvement. POTS, Lyme, Long COVID and MCAS combination.

  • Primal Trust testimonials: Neal

    Partial Long COVID Moderate primaltrust.org · sells

    Credits brain retraining. Neal had moderate long COVID and reports a partial improvement. Also diagnosed with POTS and ME/CFS.

  • Doctor's Recovery From POTS and Long COVID

    Substantial Long COVID Very severeIll 9 months retrainingthebrain.com · sells

    Credits brain retraining. Louise was ill 9mo with very-severe long COVID and reports a substantial improvement. Wheelchair-bound doctor; walking again after 4 weeks.

  • Vanessa's journey: from chronic illness to recovery

    Substantial Long COVID Very severeIll 4 years livingproof.org.uk · sells

    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.

  • Cedar Brown's Story

    Full recovery ME/CFS SevereIll 5 years the-recovery-hub.org · sells

    She recovered from ME/CFS, alongside POTS, mold illness, IBS and anxiety, using a combination of Low Dose Naltrexone (LDN), the Edison Effect Program by Anj Garneri, Trauma Healing Accelerated and somatics work, pacing, IFS parts work and mold remediation,…

  • Shannon Shares How to Heal from CFS, Fibromyalgia and POTS

    Full recovery ME/CFS ansrewire.com · sells

    Credits brain retraining. Shannon had ME/CFS and is described as fully recovered. Triple diagnosis; page returned server error.

  • How Recovery from ME/CFS and POTS Was Enabled by Family Psychotherapy

    Full recovery ME/CFS SevereIll 5 years cfsunravelled.com · sells

    Credits brain retraining and trauma and somatic work. Mollie was ill 5y with severe ME/CFS and is described as fully recovered. Husband's account; IFS family therapy plus ANS REWIRE.

  • My Story of Craniocervical Instability, ME/CFS, and Tethered Cord

    Substantial ME/CFS Very severe mechanicalbasis.org

    Jeff Wood's treatment progressed from a Philadelphia cervical collar (worn over a month) to a halo brace with four skull screws (worn several months) to skull-to-C2 fusion surgery in early 2018, guided by a dynamic CT scan with flexion and extension views;…