Page Synopsis: All CFS patients show the presence of infectious agents, though it's unclear if that's symptomatic of CFS or causal
Taking antivirals is a serious commitment of injections, multiple doctor visits, side effects etc.
Skill Level 3
Relevance:3 Technical Level:5
page 23 CFS > ALLOPATHIC MEDICINES > CHRONIC INFECTIONS TREATMENT > ANTIVIRALS
Hot topic that requires serious consideration. The problem is, even if pathogens are temporarily cleared, new ones will invariably appear, and with CFS most likely due to CDR, any stress or insult to the system would bring CFS patients out of remission. This is why it's best to address the root cause of CFS rather than destroying infectuous agents (to which we will irregardless always be exposed
Complete report on antiviral treatments https://bra.in/5qzAe6
Dr Lerner's way
with ME/CFS, antivirals take many months to begin to show effect
user Martin McCoy on healtrhrising '8 human Herpes being a retrovirus cannot be eliminated once we are infected.
Most (like 90+%) of us have herpes 1,2 (distinguishable only by a biopsy) 3, 4, & 6 or 7……
After discussing with my knowledgeble pharmacist he said (the expensive) antivirals are available for only 1/2, 3 & possibly 5.
Yet the current culprit (according to NIH’s Pub Med) appears to be 4; also known as eptein-barr or ‘Mono’.
My pharmacist said there’s no anti viral for that….
It seems that just as 3 (chicken pox) returns as far more serious shingles, a similar thing is taking place with 4 (which ~95% of us have…)
So for the majority of us who got EM/CFS after ‘flu-like symptoms’, indicating some kind of infection, we must be patient'
Valcyte (Valganciclovir) 2 and a complete remission Antiviral Drug for Herpesviruses B
Valcyte is a potent antiviral drug effective against a wide spectrum of herpesviruses, including EBV, HHV-6, cytomegalovirus, varicella-zoster and herpes simplex. Typical dose for ME/CFS is 900 mg daily. Studies which have examined the efficacy of Valcyte for ME/CFS are detailed in [this post](https://forums.phoenixrising.me/threads/valganciclovir-research-paper-jose-montoya-andreas-kogelnik.24853/page-2#post-833690).
ME/CFS patient Oly reams https://forums.phoenixrising.me/threads/prevymis-letermovir-for-cmv-fda-approved.57727/page-2#post-956415 — with active cytomegalovirus infection made a **2-level gain**, moving from moderate ME/CFS to remission, as a result of taking Valcyte 900 mg daily; but if he stops the Valcyte, he finds the ME/CFS soon returns.
ME/CFS patient Mariesak https://forums.phoenixrising.me/threads/intro.56922/#post-945414 — went into a partial remission lasting 8 years, after a 9 month course of Valcyte (her health gains remained even after she stopped the Valcyte).
ME/CFS patient Mariesak's daughter https://forums.phoenixrising.me/threads/intro.56922/#post-945414 — completed a 12 month course of Valcyte and also went into remission, and has remained in remission for over a decade.
ME/CFS patient JenB https://forums.phoenixrising.me/threads/jen-brea-talking-to-gmt-news.55636/page-2#post-928057 — found Valcyte had a "profound effect".
ME/CFS patient TracyD https://forums.phoenixrising.me/threads/valcyte-third-time-lucky.61735 — improved on low-dose Valcyte 450 mg once daily.
ME/CFS patient SOC https://forums.phoenixrising.me/threads/what-has-helped-you-the-most.29586/#post-452161 — made a **1-level gain** on Valcyte, moving from severe to moderate.
ME/CFS patient SOC's daughter https://forums.phoenixrising.me/threads/valcyte-how-long-have-you-been-were-you-on-it.13519/#post-226183 — made a **1½\-level** gain, going from nearly housebound (moderate ME/CFS) to full remission after 18 months on Valcyte for active HHV-6.
ME/CFS patient Peter42 https://forums.phoenixrising.me/threads/valcyte-second-time-germany.62022 — with mild ME/CFS made a **1-level gain** and became almost free of ME/CFS symptoms after taking Valcyte for a year. Then 2 years after he stopped taking Valcyte, his ME/CFS returned.
ME/CFS patient ArgyrosfeniX https://forums.phoenixrising.me/blogs/five-years-in-a-slow-decline.2519 — made a **1-level gain** moving from moderate to mild ME/CFS after two years of Valcyte at 900 mg once daily.
ME/CFS patient Dan USAAZ https://forums.phoenixrising.me/threads/foscarnet-protocol-for-hhv6.76064/#post-2200869 — with severe HHV-6-associated ME/CFS improved on Valcyte 900 mg daily, perhaps achieving a **½-level gain**.
ME/CFS patient stefl https://forums.phoenixrising.me/threads/why-did-antivirals-valcyte-etc-for-seids-fail.77673/post-2230203 — achieved a **1-level gain** moving from severe ME/CFS to moderate after 450 mg dose of Valcyte twice a day for 10 months. This improvement occurred in 2008, and has lasted more than a decade.
ME/CFS patient RUkiddingME https://forums.phoenixrising.me/blog-articles/valcyte-2013-9-months.1473 — with severe ME/CFS and bedbound most of the time was able to resume driving and shopping again after a year on Valcyte (**1-level gain**)
Oxford Textbook of Sleep Disorders
More recently, valganciclovir showed promising results in a subset of CFS patients with elevated IgG antibody titers against human herpesvirus 6 (HHV- 6) and Epstein Barr virus (referring to Randomized clinical trial to evaluate the efficacy and safety of valganciclovir in a subset of patients with chronic fatigue syndrome https://pubmed.ncbi.nlm.nih.gov/23959519
Robert Naviaux's Q & A For the 2016 ME CFS
Many antibiotics like tetracyclines, erythromycin, and the fluoroquinolones (eg, Cipro), and antivirals like acyclovir, fialuridine, AZT, and ddC also inhibit mitochondrial functions when used chronically (usually for more than about 3 weeks).
Because mitochondria are descendants of free-living bacteria, their machinery for protein synthesis, RNA synthesis, and DNA replication are susceptible to many antibiotics, and for reasons unique to mitochondrial DNA synthesis, they are also sensitive to antivirals.
Chronic use of these drugs can do more harm than good if there is no longer good evidence for an active infection. When mitochondrial functions are critically impacted by long-term use of certain antibiotics, a ripple effect in metabolism and gene expression is produced that can further impair energy production by mitochondria, converting an active cell danger response that occurs during active infection to a hypometabolic survival response.
In the field of mitochondrial medicine we are particularly sensitive to these issues of iatrogenic toxicity because some of the drugs that inhibit mitochondrial functions are very commonly used in patients without mitochondrial disease. For example, statins, valproate, and metformin can each produce problems in patients with pre-existing mitochondrial dysfunction. Most doctors do not think about how some antibiotics, antivirals, and other common drugs can inhibit mitochondrial function when they are used chronically. Our patients with mitochondrial disease are often the ones who educate their doctors about the mitochondrial dangers of many common drugs.
I know this is a sensitive area for many people struggling with CFS. It is important to emphasize that individual medical decisions must be governed by individual responses to treatment. Medical decisions should be informed by science, but cannot be based solely on abstract scientific concepts without also considering the many other clinical variables relevant to the care of each specific patient treated as an individual.
Some patients do better on drugs that we would Page 4 of 4 consider to be inhibitors of mitochondrial function. This may not have anything to do with the conventional pharmacologic classification of the drugs as antibiotics, antivirals, anticonvulsants, antidepressants, neuroleptics, or anticholesterol agents. Most drugs have metabolic effects beyond their primary action. Because the field of metabolomics is so new, these “pharmacometabolomic” effects of drugs have not yet been studied well
Testing Laboratories, Treatment Centers, Specialists and Clinics
Testing for amount and kind of brain cells by evaluating R2t* signal from MRI scan
Hormone Replacement Therapy (HRT)
Disruption in Blood Brain Barrier and (mast cell or astrocyte) production cytokine