How it went
Did it last?
- 7 of 56 said the benefit wore off (including the 3 who relapsed).
- 8 of 56 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 | 7 | 12% |
| Near-full | 7 | 12% |
| Substantial | 25 | 45% |
| Partial | 13 | 23% |
| Relapsed | 3 | 5% |
| No benefit | 1 | 2% |
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Mild | 1 | 0% | |
| Moderate | 6 | 33% | |
| Severe | 23 | 22% | |
| Very severe | 12 | 25% |
14 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.
How often it comes up
Posts that mention Valcyte / valganciclovir, per 1,000 posts each year. Hover a point for the count.
Show as a table
| Year | Posts mentioning it | All posts | Per 1,000 |
|---|---|---|---|
| 2009 | 4 | 184 | 21.7 |
| 2010 | 31 | 682 | 45.5 |
| 2011 | 42 | 704 | 59.7 |
| 2012 | 77 | 1,491 | 51.6 |
| 2013 | 95 | 1,708 | 55.6 |
| 2014 | 32 | 2,352 | 13.6 |
| 2015 | 20 | 2,158 | 9.3 |
| 2016 | 17 | 1,431 | 11.9 |
| 2017 | 14 | 3,110 | 4.5 |
| 2018 | 33 | 2,201 | 15.0 |
| 2019 | 28 | 1,075 | 26.0 |
| 2020 | 20 | 2,581 | 7.7 |
| 2021 | 15 | 1,867 | 8.0 |
| 2022 | 5 | 1,166 | 4.3 |
| 2023 | 0 | 1,000 | 0.0 |
| 2024 | 1 | 1,237 | 0.8 |
| 2025 | 4 | 1,019 | 3.9 |
| 2026 (so far) | 0 | 840 | 0.0 |
Posts in the forum threads we archived, 26,806 in all, counted per year. A mention means the post names the treatment, not that the writer took it. These threads all contain a recovery story, so they show what those communities discussed, not everyone with ME/CFS or long COVID. All trends
All 56 accounts
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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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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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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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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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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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Antiretrovirals to treat MECFS
Truvada (emtricitabine/tenofovir), taken for about three months before adding Valtrex and Valcyte on an ongoing basis. Illness duration and severity beforehand are not stated, though functioning was self-rated at 5 out of 10. Improved to 7 out of 10 on…
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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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Renee Can't Exercise But Otherwise Has A Normal Life
Tried Valtrex and separately Valcyte for ME/CFS. Says Valtrex made her ill and Valcyte had no effect, and emphasizes how much the disease varies between patients. No illness duration or severity detail is given, and no benefit from either antiviral is…
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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 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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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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Recovery Story Survey Suggests Some Commonalities
Alternates between Valcyte and either Famvir or Valtrex, cycling between antivirals, for ME/CFS complicated by recurrent bacterial and viral infections from immune dysfunction. On a rough 1-10 disability scale, says he has gone from a 3 to an 8, now varying…
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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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Valcyte and Valtrex Return Alan to Work
Took Valcyte and Valtrex, antiviral medications, for ME/CFS with gradual onset. Illness duration before starting is not given in the excerpt. Returned to full-time work but must still be careful about activity and keep his heart rate low, and can no longer…
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Deanna Gets Better the Lerner Way: A Valcyte ME/CFS Success Story
Followed Dr. Lerner's protocol using Valcyte for ME/CFS linked to an HHV-6 infection, after the illness had pushed her, a previously athletic mother, to the brink. Illness duration before starting is not given in the excerpt. Is now working full time and can…
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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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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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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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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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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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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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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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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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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?
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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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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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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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
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
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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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.