How it went
Did it last?
- 31 of 148 said the benefit wore off (including the 14 who relapsed).
- 18 of 148 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 | 18 | 12% |
| Near-full | 13 | 9% |
| Substantial | 55 | 37% |
| Partial | 45 | 30% |
| Relapsed | 14 | 9% |
| No benefit | 3 | 2% |
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Mild | 1 | 0% | |
| Moderate | 14 | 29% | |
| Severe | 57 | 18% | |
| Very severe | 24 | 33% |
52 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
- Valcyte / valganciclovir51 accounts
25% 14%
- Valtrex / valacyclovir39 accounts
31% 21%
- Famvir / famciclovir (Pridgen)24 accounts
12% 17%
- Tenofovir / antiretrovirals18 accounts
11% 17%
- Doxycycline and other antibiotics15 accounts
33% 7%
- Oxymatrine / Equilibrant10 accounts
30% 50%
- NAC and glutathione9 accounts
22% 11%
- Low-dose naltrexone8 accounts
38% 12%
- Pacing and the energy envelope8 accounts
38% 25%
- Herbal and Chinese medicine7 accounts
29% 29%
- Mold avoidance / CIRS protocol7 accounts
29% 0%
- Lyme / co-infection protocols6 accounts
33% 0%
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 Antivirals itself. Read the story before drawing conclusions.
- Side effects
This index page notes that Christy tried maraviroc and truvada together, which produced "dramatic improvement in 2 days" but caused side effects that made her stop them, calling them "not the right meds for me." The page does not state how long she'd been ill or how severe it was beforehand, and mostly serves as a directory to other posts rather than a full case account.
- Blood count problems
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 second course on the same regimen plus famciclovir (Famvir) that she stopped after about 2.5 months due to anemia-related breathing difficulties; and a current, third course of just one 450mg pill a day, taken selectively on days it wasn't causing weakness, now five months in.
- Side effects
The gains have held over the five months so far, though she says she is not back to normal and remains dependent on supplements to function; her first two courses each brought partial, non-durable improvements before being cut short by side effects.
- Made symptoms worse
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 quarter-tablet Mestinon four times daily, then Celebrex 100mg twice daily.
- Gut side effects
Titrated oxymatrine up to one pill twice daily over 5-6 months, for ME/CFS that had left her housebound on constant bedrest and functioning at "about 35-40%." After an initial worsening (cold sweats, fever, vomiting), reports going "from functioning at about 35-40% to 70% within one day and have sustained that for one week so far" - able to wash her car, drive and socialize.
- Herx / die-off reaction
After an initial herx reaction, they improved steadily over about a month, calling it a miracle that let them work out hard and walk around all day, essentially clearing their CFS symptoms while on it.
- Herx / die-off reaction
The improvement was not steady, though: it alternated with a severe flare ("hit like a ton of bricks") of nerve-distribution muscle twitching, malaise and weakness she attributed to a possible Herxheimer-type reaction, describing the overall pattern as fluctuating rather than a clean recovery while continuing the supplement regardless.
- Liver or kidney problems
He later stopped all three drugs after his liver enzymes rose but says he "held on to my gains" afterward.
- Side effects
After three months her CMV lymphocyte stimulation index dropped from 65 to 30 and she reported "feeling better" overall, gaining enough energy for the gym twice weekly, though with significant side effects she called the "drug from hell" (muscle and bone pain).
- Blood count problems
His blood counts then relapsed despite continuing both drugs; adding tenofovir produced a second response lasting only 14-20 weeks at the time of the report, so the benefit did not durably hold.
- Side effects
Starting from three naps a day and 8-10 hours in bed a night, "barely" able to keep his head up (a week-long Valtrex trial had caused adverse effects, so he avoided it), began Famvir plus Immunovir and started improving after about two months.
All 148 accounts
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Improvement story
Across several posts spanning 2023-2026, Gzephyr describes climbing out of EBV-reactivation-driven CFS using valacyclovir as a base, adding NAC and intermittent fasting, and finally a tonsillectomy in early 2025. He says he went from severe (~8/10 fatigue,…
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I'm normal now. Here's my promised update for y'all
Started with IFN lambda combined with GS-441524 for underlying Enterovirus B infections, which brought about 60% improvement, then moved to a multi-drug antiviral regimen described as molnupiravir, GS-441524, Vermurafenib, ribavirin and pleconaril plus…
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Recovery Protocol Cheat Sheet
Christy's posted recovery protocol lists an extensive regimen: pre-protocol, three months of Eliquis 5 mg daily and clopidogrel 75 mg daily; from February 2024 a "foundation" of nutritional antivirals including matcha green tea, coconut oil, unpasteurized…
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My Recovery from Long COVID PEM Part 2: Microclots
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…
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My Recovery from Long Covid PEM: Part 1
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…
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Treatments. Yes, they do exist.
In this follow-up post, Encephalogirl (Michelle) lists an expanded regimen: low-dose naltrexone, low-dose Abilify, guanfacine, about nine months of tenofovir as part of a planned minimum one-year antiviral course, six weeks of low-dose rapamycin at 1mg once…
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Dr Chia finds enterovirus patients given remdesivir remain in remission (Godlovesatrier)
A long COVID patient who took a five-day molnupiravir course and experienced roughly four months of what he calls an almost near remission afterwards. It was not permanent: by the time of posting he was planning a second course and looking into remdesivir…
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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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People with Long COVID turn to online drug markets (Sofia)
Sofia, in Austria, bought a four-month supply of sofosbuvir for about 200 euros from an anonymous Twitter/X user who had sourced it from India; the article does not say how long she had had Long COVID. On it, she went from 40% to 60% of her previous level of…
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People with Long COVID turn to online drug markets (Tiff)
Tiff, in the US, took a 10-day course of Paxlovid plus sofosbuvir, a hepatitis C antiviral, that a friend brought back from India, after having Long COVID since 2020. She said she felt like she did before 2020, with her energy back, no PEM crash and no brain…
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Testosterone resolves fatigue and inflammation
This poster credits testosterone, added on top of ongoing antiviral treatment, with improving energy, recovery and joint pain, calling it icing on the cake and naming it one of his three essential treatments alongside an antiviral and a sleep aid. Dose and…
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Improved on triple anticoagulant therapy, considering adding tenofovir
Five months into apixaban, clopidogrel and aspirin (aspirin eventually raised to 100mg/day) for Long Covid presenting as moderate ME/CFS of over two years' standing, improvements appeared around day 40: ability to tolerate screens "increased manyfold," eye…
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My Personal Story Posts
This index page notes that Christy tried maraviroc and truvada together, which produced "dramatic improvement in 2 days" but caused side effects that made her stop them, calling them "not the right meds for me." The page does not state how long she'd been…
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List of ME/CFS Recovery and Improvement Stories (page 10 discussion)
fingers2022 has been on PrEP (tenofovir/emtricitabine, an antiretroviral combination) for 5 years and roughly doubled his weekly training energy expenditure (1,500 to 3,000 kcal), tracked objectively via parkrun and Strava data, with better physical capacity…
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HHV-6/EBV testing UK? / Remitting symptoms on Molnupiravir?
Replying to FoxgloveFever's molnupiravir account, writes "just an FYI this happened to me on molnu too - at least I experienced 90% for four months and then relapsed." Gives no detail on the molnupiravir dose or course, or on illness duration or severity…
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HHV-6/EBV testing UK? / Remitting symptoms on Molnupiravir?
Took a standard course of molnupiravir to treat a COVID infection in 2023, against a backdrop of ME/CFS since 2006 (severity "varying from mild to severe") plus Long Covid from 2022 that had left her "mostly bedbound for a year." Reports "my ME/CFS symptoms…
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Here's an interesting result from my experience with common EBV treatments
Raised Valtrex from 3g to 4g daily and added short courses of oil of oregano, high-dose monolaurin and high-dose vitamin C, after stress reactivated EBV two years earlier and caused "pure emotional flatness" and neurological problems on top of CFS. Hedges…
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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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Mild NAC success story. Anyone else?
Three years after an EBV trigger and already on valacyclovir, adding 600mg of NAC daily for about two months reduced lymph node swelling and tonsil and sinus inflammation and raised the post-exertional malaise threshold tremendously, allowing walks and…
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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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Japanese Encephalitis Vaccine article comments (Suzanne)
Suzanne received the Shingrix vaccine about a month before her comment and subsequently added acyclovir. She said she was "still coasting on the huge improvement" the Shingrix vaccine gave her, though the page gives no specifics on her prior illness severity…
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Mestinon + Famvir - whoa!
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…
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Impact of extended-course Paxlovid in established Long COVID (Case 4)
Case 4, a 51-year-old man about 6 months into Long COVID with fatigue, daily headaches, brain fog, mental exhaustion, PEM, racing heart, palpitations, tinnitus and visual/sensory disturbances, took a 15-day extended Paxlovid course in March 2023 alongside…
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Immediate positive response to antivirals/immune-modulators, then worse?
Trialed valacyclovir, ranitidine and cimetidine separately, each as single doses and then multi-day courses of up to 4-5 days, with at least a week's break between attempts. Each drug produced "near-complete resolution of fatigue, headache" within about an…
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A Rapamycin Resurgence: An MD Moves the Needle on his ME/CFS
Liver derivative complex (Nexavir) was one of more than a dozen treatments he listed trying, alongside antidepressants, antivirals, erythromycin, doxycycline, NAC and others, with no dose or duration specified for it individually. He had been very severely…
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Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)
Started Otezla in autumn 2018, which "made a big difference" within a month, then added valganciclovir, ritonavir and Isentress from January 2019. Had been confined to a dark room, wheelchair-bound and unable to tolerate sound or light after a 2016 crash;…
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No PEM after weeks on Valacyclovir
Restarted valacyclovir at 1g three times daily after roughly a year spent bedridden 20-22 hours a day, following a 2009 viral onset, a 2011-2016 quasi-remission, and a hard relapse after a second viral infection in 2016. Just over a month in, reports…
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REMISSION! (suspected enterovirus, Dr. Chia treating)
Under Dr. Chia's care for suspected enterovirus, .jm. built up to running 40 miles/week by an April 2021 update (up from an initial "REMISSION!" post 18 months earlier), with insomnia and Raynaud's resolved, while tapering oxymatrine down to a maintenance…
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Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)
Ran a long multi-drug protocol: valganciclovir at 450mg twice daily for a year then a lower maintenance dose for another 8 months, repeated after HHV-6 reactivated again; famciclovir 500mg three times daily for 6 months; gammaglobulin infusions every three…
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Pulsed high dose methylprednisolone plus inosine plus inositol = cured?
After 30 years of illness, pattismith reports that a short pulsed high-dose corticosteroid course (with valacyclovir and inosine/inositol layered in) resolved her pain quickly, restored energy, and cleared her thinking enough to socialize again - "pain was…
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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 Suffering of One - Relieved: Kyle McNease's ME/CFS Recovery Story Detailed
Kyle McNease, an Oxford student, became severely ill for three and a half years after arsenic poisoning from renovating an old barn, compounded by genetic detoxification impairments; at his worst he was emaciated, unable to communicate and near death. He…
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More Fatigue with Famciclovir, I Must Continue
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…
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Valcyte - Third Time Lucky
After two earlier unsuccessful attempts, a third course of half-dose Valcyte (450mg/day) took her from an estimated 25% of normal capacity to about 50%, from being, in her words, "warehoused" to "working a little," including teaching about two hours forty…
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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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Beginning of improvement?
Six weeks into a self-directed antiviral/immune-booster stack (famciclovir, amantadine, cimetidine, astragalus, inosine, vitamin C) for CFS that began after an unresolved flu six years earlier, reports "much more energy, no brain fog, no fatigue, no chest…
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Does Valtrex work this fast?
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…
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Does Valtrex work this fast?
On Valtrex 1000mg once daily, with high EBV titres, went from six 30-minute naps a day to "one 20 minute nap a day" within three days, with enough energy to "actually do a load of laundry." The first four-month course faded after about five months; on…
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Does Valtrex work this fast?
Only three days into Valtrex 500mg twice daily, reports "I noticed some improvements": neck spasms "milder," neck lymph channels "congested less," and air hunger "less severe and less frequent." Explicitly early and hedged - the thread title itself questions…
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26 Years of Hell: An ME/CFS/FM Recovery Story
After 26 years of ME/CFS and fibromyalgia (and roughly $200,000 spent on failed treatments), this patient started the Pridgen protocol of Famvir, Celebrex and Cymbalta, with Tramadol for pain. Around 10 weeks in she had a sudden resolution of sensory…
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After 26 Years of Hell, the Pridgen Protocol Does it for X
The patient, identified only as "X", used the Pridgen Protocol under Dr. Pridgen — Famvir (an antiviral) combined with Celebrex (an anti-inflammatory) — though the page gives no specific doses or treatment duration. He had been ill for 26 years, dropping…
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Starting on Valtrex --feeling die-off -- any positive stories?
On Valtrex 6g/day since January, reports joint pain "disappeared completely," with heat tolerance and heart palpitations also improved, and explicitly self-labels as "a responder and success story." Caveats that energy levels remained low: "still in bed most…
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Starting on Valtrex --feeling die-off -- any positive stories?
Three months into Valtrex, raised from 3g to 4g daily but started "along with a number of other meds and supplements... all around the same time," went from being "bed and recliner ridden," using a wheelchair for all outings, to being able to "use a walker…
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Starting on Valtrex --feeling die-off -- any positive stories?
On Valtrex 500mg twice daily, reports it "helped with sore throats, swollen glands" and "awful burning legs/lower spine," with the effect arriving "quite quick i.e. within a week or so." A targeted, symptom-level improvement rather than a broad recovery…
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Tenofovir (Viread), Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs? Tenofovir Poll
Keela Too, housebound/using a wheelchair or mobility scooter for three years, took tenofovir for a year with regular kidney monitoring, adding sodium bicarbonate from the six-month mark. Gains built slowly from about month 4 to a peak at month 10, greatly…
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Mestinon + Famvir - whoa!
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…
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Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll
Took tenofovir and raltegravir continuously for four years for ME/CFS that began after a measles/rubella/polio booster as a teenager, with extensive testing having ruled out Lyme disease. Quoted directly as saying "After 20 years of ME I am now cured. My 4th…
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Easy Does It For Nathalie: A Chronic Fatigue Syndrome Improvement Story
Tried Low Dose Naltrexone (immediate but partial relief from stiffness), a six-week high-dose course of Famvir that gave no benefit, and three years on Valcyte (valganciclovir), which brought her "back to life" out of a bedridden state within weeks but left…
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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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Full Remission Claimed (fingers2022)
A former elite triathlete, fingers2022 reports his resting heart rate moving back toward pre-illness levels and activity volume up about 15% and intensity up about 10% after two months of an unprescribed antiretroviral combination. He is explicit that he…
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Full Remission Claimed (ScottTriGuy)
ScottTriGuy, who also has HIV and has taken antiretrovirals since 2002, says he sometimes wonders if he would be a lot sicker from his ME/CFS without them and describes better quality of life, without calling himself cured. He separately notes that being…
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Oxymatrine: What to expect with fatigue and how long? (And my on-going journey, info and questions.)
Titrated oxymatrine up to one pill twice daily over 5-6 months, for ME/CFS that had left her housebound on constant bedrest and functioning at "about 35-40%." After an initial worsening (cold sweats, fever, vomiting), reports going "from functioning at about…
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Success on Valacyclovir at 3.5 Months!! - Plus some Questions...
Took valacyclovir at 4g/day, reduced to 3g/day after three months, for ME/CFS marked by "sky high titres" to EBV and shingles virus, months-long viral crashes, severe migraines, and being "borderline suicidal at a couple of points" over 15 years. At 3.5…
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mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas
Two days into taking Rapamune, wrote "feel much much much better. Finally spent most of the day out of bed," and on day two, "it still seems to be working." Explicitly cautious about reading too much into so little time, noting prior false hope with Famvir…
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Spironolactone Usage
Rrrr had taken spironolactone for years (originally for PCOS-related hair growth) and reported a good effect on ME/CFS years before its antiviral properties were documented, but was uncertain in a 2017 follow-up whether to resume it after stopping, given…
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Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll
States only "Tenofovir helped me," adding that she had deleted most of her original, more detailed post "with ongoing forum upheaval" and pointing to an outside blog post instead. No dose, illness-duration, severity, or durability information remains in the…
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Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll
Reported in the same thread that "Tenofovir is helping me a lot," with "no side effects at all or die off type stuff," and liver and kidney function tests staying normal. Gives no detail on illness duration, severity, dose, or how long he had been taking it,…
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Good results from valtrex and valcyte combo
Added Valtrex 1g/day, then Valcyte 450mg twice daily a month later, on top of about a year already on Truvada, for CFS present "5 to 6 years" but only diagnosed 3-4 months earlier; self-rated baseline severity "5 or 6 out of 10," never bedridden but with…
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Antiviral Regimen Returns Wheelchair-Bound ME/CFS and Fibromyalgia Patient to Health
Jacyln, wheelchair-bound and sleeping over 20 hours a day with body-wide pain after onset following pregnancy, was put on high-dose Valtrex plus Valcyte by Dr. Lerner to target active EBV. By age 24, about three years after onset, she reported being fully…
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A Fibromyalgia Patient Finds Help with Antivirals
Melissa followed Dr. Lerner's antiviral protocol after testing positive for active cytomegalovirus and Epstein-Barr virus, taking unspecified antibiotics and antivirals; the page does not give exact drug names or doses. She had developed fatigue, postpartum…
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A Decades Long Struggle with Chronic Fatigue Syndrome Ends
Kate, a high school teacher, developed a persistent flu-like illness in 1987 that left her severely disabled for 25 years with fevers, chills, muscle and joint pain and memory problems. Dr Lerner diagnosed an active HHV-6 infection and prescribed high-dose…
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Amy's Story - from Athletic Go-Getter to Homebound and Back Up Again
Amy was an athletic runner working 60-hour weeks whose progressive fatigue, triggered by fevers after long runs, left her mostly home- and bed-bound and unable to work within a year. Dr Lerner treated her with Valcyte and she improved to near-normal daily…
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Renee Can't Exercise But Otherwise Has A Normal Life
Renee, too weak for moderate exercise and nauseated within months of a December 2002 onset, had her cognitive symptoms resolve within weeks of starting Valtrex, then added Valcyte after 9 months. By 2010 she had reached 8/10 energy and near-normal life,…
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Long Treatment Regimen Reaps Dividends for Irene
Irene, a college teacher, developed severe ME/CFS with active EBV and HHV-6 infections after 2001, with extreme fatigue, migraines, joint pain and memory loss. Over more than a decade she combined Valtrex and Valcyte, Babesia treatment, atenolol, complete…
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Recovering from ME/CFS and Fibromyalgia: The Lerner Way (Marilynne)
Began with nine twice-monthly hospital infusions of IV valacyclovir, then moved to Valcyte (valganciclovir) at 450mg, two tablets twice a day, continuing through May 2015 until she started regressing after switching to a generic version of Valcyte introduced…
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Recovering from Chronic Fatigue Syndrome and Fibromyalgia: The Lerner Way
Janet went from a 1 to a 7-8 out of 10 on Dr. Lerner's functional scale on Valtrex, starting at three pills a day and reducing to two after 11 years. The gain requires ongoing maintenance dosing: dropping to a lower dose brings back headache, swollen glands…
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The Flu That Never Ends Finally Does for Heather
After four years of cognitive trouble, digestive problems, body aches and severe fatigue that diet, yoga, acupuncture, chelation and blood irradiation had not touched, Heather was prescribed Valtrex by Dr. Lerner in 2010. By 2012 she reported being fully…
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Fearing Death Was at Hand, Fred Finds an Answer
Fred, a university professor, became severely ill with an acute flu-like onset in 1991 and was homebound by 2006. Valcyte under Dr Lerner's protocol brought him to about 75% functioning within six months, letting him socialise, travel and do home…
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Antiviral Regimen Returns Wheelchair Bound ME/CFS and Fibromyalgia Patient to Health
Jaclyn developed ME/CFS and fibromyalgia around age 21 following a pregnancy, becoming wheelchair-bound with severe short-term memory impairment and sleeping more than 20 hours a day. Dr Lerner treated her with Valcyte and Valtrex plus increased water…
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Whats FINALLY worked for me.
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…
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I start to relapse every time I come off equilibrant
Equilibrant, a supplement combining shiitake mushroom with selenium, astragalus, sophora flavescens, olive leaf and licorice, was taken daily for over a year, working up to six pills a day. They had a severe bacterial infection that nearly killed them,…
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Do People Really Recover From ME/CFS and/or Fibromyalgia? An Inquiry (Sandrine)
Commenting on this inquiry post, Sandrine described about two years of severe fibromyalgia so bad she was once unable to brush her teeth and would scream from pain. She credits essential oils taken internally and topically, liposomal vitamin C, MSM, olive…
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how did you get out of "bedridden level" ??(even if you are still sick)
After roughly two years bedridden, this poster gradually stayed out of bed longer using a very restrictive diet, mineral/amino-acid supplementation and lifestyle changes, with hydrocortisone accelerating progress further; she notes in hindsight she hadn't…
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how did you get out of "bedridden level" ??(even if you are still sick)
States directly that a combination of the antivirals Valcyte and Famvir plus medication for orthostatic intolerance got him out of bedridden status. No hedging, doses, duration or durability detail is given in the visible post.
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how did you get out of "bedridden level" ??(even if you are still sick)
Reports moving from bedbound to largely housebound, eventually able to grocery shop, after starting Valcyte, which he says "unquestionably" helped, though he needed "a whole lot of additional treatments" beyond it for further gains. No doses, duration or…
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Deanna Gets Better the Lerner Way: A Valcyte ME/CFS Success Story
Deanna was a physically fit 39-year-old when progressive ME/CFS left her mostly homebound, sleeping 12-15 hours a day and needing to crawl up stairs. Under Dr Martin Lerner she used Valcyte with stress reduction, pacing and steroids, and is described as…
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Valcyte and Valtrex Return Alan to Work
Alan had episodes of drastic fatigue from his late twenties but developed sudden, lasting fatigue at 53 that was much worse by 58, leaving him mostly homebound. Under Dr Martin Lerner he took two years of Valcyte followed by Valtrex. He now leads a…
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From hospitalization to recovery: Leah's Dr. Lerner ME/CFS Recovery Story
Leah, mostly bedbound and repeatedly hospitalized (weight fell from 115 to 89 lbs) after onset in 1996, was put on Valtrex by Dr. Lerner and recovered to near-normal function for seven years before relapsing and needing a second course. On the second course…
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Has anyone achieved remission or recovery from treatment by any doctor?
SOC's daughter took two years of combined antivirals, Valcyte (valganciclovir) and Valtrex (valacyclovir), prescribed by an ME/CFS specialist. Beforehand she had been declining, sitting around activity level 4-5; on the antivirals she rose to about level 8-9…
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Has anyone achieved remission or recovery from treatment by any doctor?
SOC does not name specific drugs or doses, but says antivirals from an ME/CFS specialist lifted them from a severely disabled level of about 1 on a self-rated activity scale to about 3-4 over several years, while a later specialist's broader range of…
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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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2 Months Into Valtrex Treatment
With high EBV titers causing ongoing flu-like symptoms, took Valtrex 1g twice daily for about two months and reported "significant relief of symptoms/pain." The thread ends there without follow-up on whether the improvement was sustained.
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what has worked for you
After 20 years of illness severe enough that she says she "would be" completely housebound and probably bedbound without treatment, unnamed antivirals and immune modulators keep her functioning at home, attending only medical appointments outside it. She…
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A Proven Treatment-Cure for Chronic Epstein Barr Virus
After 19 years of illness including multiple chronic infections, Abdulrahman self-designed an antibiotic course for mycoplasma followed by a supplement-heavy antiviral protocol for EBV, and reports being "95% cured for 2.5 years," functioning better than the…
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My Rituximab experience with RA and ME
Completed a full course of 6 Rituximab infusions and got "only a few weeks of CFS/ME symptom remission" before it faded. In a later post about the same OMI-administered treatment she called it "not worth $40k," saying she has since done better with Dr.…
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Seeing some immediate improvement with ARVs
Started Isentress and Truvada after years of antibiotics for comorbid Lyme disease and ME/CFS (also XMRV-positive) had only kept him from "disability." Reports "immediate improvement" and, hedging with "if I had to guess," attributes "85% of my improvement"…
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One year follow-up valcyte, colchicine, and doxycycline
After 11 years of illness severe enough to force retirement from his healthcare career and keep him in bed roughly half the time, he took Valcyte titrated from 225mg to 900mg/day over 2.5 months plus colchicine 9mg/day, then added doxycycline 100mg twice…
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Famvir- my story
Started Famvir at 500mg three times daily, gradually titrating up, and by three to four months noticed cognitive and physical improvements herself, with her family remarking on the change and her daughter saying she was "getting her mom back." Brain fog,…
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Feeling generally better
Thirty years after a mono-triggered onset that left her housebound, unable to drive or cook, with severe vertigo and depression, she layered years of high-dose Famvir and Acyclovir and about two years of Mycoplasma antibiotics with, more recently, roughly…
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My possible Valcyte miracle!
Started Valcyte (valganciclovir) 900mg twice daily for three weeks, then dropped to 900mg once daily each morning. Within weeks felt "beyond happy, excited and hopeful," and by 34 weeks declared "LIFE IS GOOD!!!"; by nine months she was driving again after…
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Starting to see moderate success on Valcyte against CMV
Four years into illness, after 3.5 years of antibiotics and antimalarials for Lyme and co-infections (Bartonella, Chlamydia pneumoniae, Mycoplasma pneumoniae, Babesia) stopped helping, switched to Valcyte 2 tablets daily. After three months her CMV…
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Our Experience with Antiretrovirals
Ali took the same initial antiretroviral regimen as her mother (AZT/raltegravir, then tenofovir) but, unlike her mother, kept improving and remained on raltegravir plus tenofovir rather than stopping. The source (her mother's blog) reports her gains as…
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Our Experience with Antiretrovirals
Dr. Deckoff-Jones, suspecting XMRV involvement, started AZT plus raltegravir in March 2010, added tenofovir two months later, then dropped AZT (2011) and raltegravir (2011) to end on tenofovir alone before stopping all antiretrovirals by late 2012. She…
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Trying Valcyte Again, So Far So Good
niall improved roughly 30% on Ampligen but relapsed about three months after stopping, developing a cough, sore throat and fatigue alongside reactivated HHV-6 and Coxsackie virus. He attributed the relapse partly to under-dosed post-Ampligen antiviral…
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Tests coming in from Dr. Bradstreet
On ongoing GcMAF injections (plus an added antiviral, Cytomil, and a new antiviral regimen on Dr Bradstreet's recommendation) after 5 years of relapsing illness, including bouts "couch bound for months at a time." Bradstreet reviewed her labs (showing…
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Valcyte 2013: 9 months
Index entry credits RUkiddingME with roughly a year of Valcyte (antiviral) for ME/CFS improvement. No further detail on severity before or durability was available beyond the index listing.
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My Valcyte pilgrimage
Eighteen years into illness and previously bedbound, unable to sustain even a five-minute conversation and enduring daily headaches at 7-8/10 severity for up to 15 hours a day, reported that after 18 months on Valcyte they could take frequent 30-45 minute…
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Pat Gurnick Learned How to Get Well from CFS
Pat Gurnick's main treatment was the Guaifenesin Protocol (developed by Dr. Paul St. Amand), followed for 1.2 years, alongside the antiviral Kutapressin and pacing and self-regulation techniques from Dr. William Collinge's CFS book, plus staying within her…
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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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Test results and antivirals success, what are high titers, what tests?
After one month of doxycycline for Lyme disease, reported feeling "enormously better," summing up the change simply as being "off the couch and cooking again." Posted as an aside in a thread otherwise focused on antiviral titers and testing, with dosing…
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My Valcyte pilgrimage
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…
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Did KDM's treatment help you or did you get worse?
After 31 weeks of GcMAF injections plus Valacyclovir for reactivated EBV and gut dysbiosis, over more than a year of treatment, he reports "no improvement," a treatment failure in his case.
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Dr. Chia's Oxymatrine protocol - 3 great months, then crashed
On oxymatrine following Dr. Chia's protocol, prescribed through Dr. Montoya, had a "HUGE uptick in strength and stamina" in the first month, followed by "2 solid, life altering months." After about three months, though, she crashed back to pre-oxymatrine…
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Anybody improve on gcmaf alone (without hepapressin, nexavir, antivirals)?
Took KMAF, a GcMAF variant, for 2-3 months and reports viral antibody titers dropping to near-equivocal and NK-cell function improving. He is explicitly hedged about causation, writing "success is hard to measure" and that he cannot separate KMAF's effect…
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Update from Michael Snyderman, MD
Dr. Snyderman, who developed CFS about a decade after an oral polio vaccine and later CLL, started AZT plus raltegravir 571 days after his CLL diagnosis and improved for about 9.4 months, with falling cytokine markers and better fatigue, concentration and…
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Valcyte: how long have you been/were you on it?
Took Valcyte (valganciclovir) for 22 months, adding Valtrex (valacyclovir) for about the last 4 months of that period, for a herpesvirus-driven illness. No illness severity or duration before treatment is given on this page, but as of the post they describe…
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Which antivirals worked best for you?
Treated a high CMV viral load with six months of IV cidofovir (Vistide), reporting in response to a "which antivirals worked best" thread that the infection cleared and remained undetectable a full year after finishing, with no problems attributed to the…
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Which antivirals worked best for you?
Starting from a baseline of being out of bed or a recliner only one to two hours a day, tried Valtrex for seven months with little effect, then switched to Valcyte 1450mg/day. The first three months brought slight improvement, months four to six a worsening…
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What treatment has worked for you?
Took Famvir and Cycloferon alongside rotating sleep medications and adrenal hormone support, adjusted based on ongoing lab testing. Describes "an improvement and still improving" as he tweaks the regimen, explicitly calling it "not a cure but an…
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My experience on Famvir
Relapsed with CFS in October 2010 after three months of stress, then started Famvir 250mg twice daily (briefly upped to 500mg twice daily for 5-7 days) combined with Cycloferon; within two to three weeks felt "substantially better," with milder headaches and…
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Please Tell Me Your Valtrex + Valcyte Story
Starting from three naps a day and 8-10 hours in bed a night, "barely" able to keep his head up (a week-long Valtrex trial had caused adverse effects, so he avoided it), began Famvir plus Immunovir and started improving after about two months. He then added…
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Please Tell Me Your Valtrex + Valcyte Story
In Ohio, combined Valcyte, Valtrex and doxycycline (the last for a mycoplasma co-infection) and after about five months said she was "not sorry" she had done the treatment. Where she previously "could do nothing and felt sick all of the time," she gained…
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What treatments have CURED people?
After 13 years of severe illness, combined pacing with the antiviral/immunomodulator Isoprinosine (dose not given) and reached what she calls "100% remission" that lasted more than 16 months. The remission ended when she cut back the medication under stress,…
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What treatments HAVE ACTUALLY helped?
Built a regimen around rotating sleep aids (Imovane/zopiclone), Tramal, 5-HTP, Neurontin, lipoic acid, NAC, a low-carb Atkins-style diet and modified weight training, but singles out Famvir as the biggest driver, saying that without it he "would be…
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What treatments HAVE ACTUALLY helped?
Combined a large stack of B12 injections, CoQ10, Fibroenergy, amino acids, SAMe, magnesium, prescription vitamin D, Synthroid, three years of low-dose Minocin, three months of antivirals, and a gluten-free diet, without singling out one component as key. Now…
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Anyone recovered after discovering residential toxic mold exposure?
After 12 years of mostly-disabling CFS, including a final year spent bedridden 18-22 hours a day, she relocated to avoid mold/biotoxin exposure (living in a tent, then an RV, in the desert) alongside neural therapy, detox and antivirals. She says classic…
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AV's are working
Combined long-term Valtrex and Famvir, and by 18 months in reported reaching roughly "90%" of baseline function, though symptoms returned within about a week whenever he tried stopping, so he cycled on and off every few months rather than quitting. In a…
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SAM-e, Acyclovir, Atlas Profilax = Improvement from 3 to 4
After decades with ME/CFS and years stuck at "Activity Level 2-3," combined daily SAM-e (200mg) with very sporadic low-dose Acyclovir (roughly one dose every one to two weeks) plus an Atlas Profilax cervical-alignment procedure done about two years earlier.…
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Famvir for 5 days now instant relief!
Six months into CFS and running at roughly 50-60% of pre-illness baseline, started Famvir 500mg daily (250mg morning, 250mg evening) and described a "huge improvement after day 1," with less fatigue, less brain fog and less "heavy lead limb" feeling. By day…
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Do CFS Patients Ever Get TRULY Well?
Combined a mold-avoidance protocol with cholestyramine taken in low-mold locations, three months of doxycycline for Lyme, Famvir, and then Valcyte started about three weeks before posting. Says she reached full wellness roughly a year before this post, with…
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List of ME/CFS Recovery and Improvement Stories
Linda is listed reaching full recovery on low-dose oral interferon alpha (250IU 4x/day), with brain fog improving within weeks and pain clearing within about 2 months.
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List of ME/CFS Recovery and Improvement Stories
abdul1436, unable to speak or walk and sleeping 17-20 hours a day, is listed reaching remission after about 5 months on a combination of oxymatrine, inosine, dihydroquercetin and quercetin for enterovirus-associated ME/CFS - one of the most severe starting…
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List of ME/CFS Recovery and Improvement Stories
Warm_Camera_7052 is listed reaching Long Covid remission after 3 weeks of sofosbuvir, per the compiled list; no further detail on severity or durability beyond that point is given.
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List of ME/CFS Recovery and Improvement Stories
Sandman00747 is listed reporting substantial improvement on a 150mg/day tenofovir combination pill, describing PEM as resolved and saying he "almost" has his life back, with an incidental note of nail psoriasis clearing.
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List of ME/CFS Recovery and Improvement Stories
Keela Too is listed as moving from severe to moderate on tenofovir over 12 months, with the gains described as permanent.
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List of ME/CFS Recovery and Improvement Stories
Renee is listed reaching a near-normal life on combined valaciclovir/valganciclovir, though the case notes she still cannot exercise vigorously - a near-full but not complete recovery.
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List of ME/CFS Recovery and Improvement Stories
Heather is listed as reaching full recovery after about a year on Dr. Lerner's valaciclovir protocol, per the compiled list.
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List of ME/CFS Recovery and Improvement Stories
Leah is listed as moving from severe illness to "near recovery" under Dr. Lerner's valaciclovir protocol, per the compiled list.
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List of ME/CFS Recovery and Improvement Stories
RUkiddingME is listed as moving from bedbound to able to drive and shop after a year of valganciclovir, per the compiled list.
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List of ME/CFS Recovery and Improvement Stories
jstefl is listed as improving from severe to moderate after about 10 months on valganciclovir 450mg twice daily, with the gain reported sustained for 10+ years afterward.
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List of ME/CFS Recovery and Improvement Stories
Peter42 is listed as moving from mild ME/CFS to "almost symptom-free" after a year of valganciclovir, but the case notes he relapsed roughly two years after stopping treatment.
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List of ME/CFS Recovery and Improvement Stories
Mariesak's daughter is listed as reaching remission lasting 10+ years after a 12-month course of valganciclovir, per the compiled list.
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List of ME/CFS Recovery and Improvement Stories
Mariesak is listed as reaching 8 years of partial remission following a 9-month course of valganciclovir, per the compiled list.
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List of ME/CFS Recovery and Improvement Stories
As compiled in Hip's master recovery-story list, OnlyInDreams is described going from moderate ME/CFS to remission on valganciclovir, with the case noting relapse if the drug is stopped - so the remission is presented as continuing only while medicated.
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More Fatigue with Famciclovir, I Must Continue
Index entry credits Hamsterman with prednisolone for preventing post-exertional malaise. Attempting to verify the linked post did not locate a prednisolone discussion on the fetched page, so no further detail on duration of illness, severity, or durability…
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Linda's Interferon Story
Linda settled on 250-unit oral interferon alpha doses four times a day after about a month of experimenting with dosing, and reported gradual, steady improvement with no setbacks at that dose. The fetched page does not give her duration of illness, starting…
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Tenofovir (Viread), Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs? Tenofovir Poll
Index entry credits Diwi9 with oxymatrine (Equilibrant) for ME/CFS improvement; attempting to verify the linked post did not locate it, so no further detail on duration of illness, severity or durability beyond the bare index claim is available.
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Why Did Antivirals (Valcyte etc) for SEIDS Fail?
Index entry credits jstefl with 10 months of Valcyte 450mg twice daily for ME/CFS improvement. No further detail on severity before or durability was available beyond the index listing.
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Foscarnet Protocol for HHV6
Index entry credits Dan_USAAZ with Valcyte 900mg daily (antiviral) for ME/CFS improvement. No further detail on duration of illness, severity, or durability was available beyond the index listing.
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Five Years In: A Slow Decline
Index entry credits ArgyrosfeniX with 2 years of Valcyte 900mg daily after roughly 5 years of decline. No further detail on the resulting improvement or durability was available beyond the index listing.
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Valcyte - How Long Have You Been/Were You On It?
Index entry credits SOC's daughter with Valcyte for active HHV-6 reactivation. No further detail on duration of illness, severity, or durability was available beyond the index listing.
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What Has Helped You The Most?
Index entry credits SOC with Valcyte (antiviral) for ME/CFS improvement. No further detail on duration of illness, severity, or durability was available beyond the index listing.
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Jen Brea Talking to GMT News
Index entries credit JenB first with Valcyte (antiviral) for some improvement, and later, more substantially, with CCI/AAI fusion plus tethered-cord surgery (detailed on her own Medium blog, not fetched here) after she was found to have spinal instability.…
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Prevymis (Letermovir) for CMV, FDA Approved
Index entry credits OnlyInDreams with Valcyte 900mg daily (antiviral) for ME/CFS improvement. No further detail on duration of illness, severity, or whether it held was available beyond the index listing.
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Low dose IFN-a Works For Linda
The title credits low-dose interferon-alpha with helping Linda's ME/CFS, but only a short excerpt of the page could be retrieved. In it Linda says relaxing has become a deliciously pleasurable sensation she had not felt since 1983, and that her body now…
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A Fibromyalgia Patient Finds Help With Antivirals
Credits antivirals. An unnamed patient had ME/CFS and reports a partial improvement. Fibromyalgia-only patient.
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After 26 Years of Hell, the Pridgen Protocol Does It
Credits famciclovir. An unnamed patient was ill 26y with ME/CFS and reports a substantial improvement. Pridgen antiviral/celecoxib protocol.
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Andrew Chia
Andrew Chia credits his recovery from ME/CFS to the immunomodulator interferon and the Chinese herb Sophora flavescens (contained in the supplement Equilibrant), though the page gives no specific doses or treatment duration. He developed CFS in 1997, in high…