I'd like to know what I am up against, especially regarding coxackie /enteroviruses but given my ebv igm is raised I don't think a trial of valciclovir would be the worst idea in the world..
That may be an idea, though Dr Lerner's studies
show it can take 3 or 4 months before improvements even begin to manifest. And that's on high doses of Valtrex 1000 mg several times a day.
So hard to navigate this, being the wrong side of moderate and borderline severe leaves you feeling like you are on the ropes so your a bit limited by what you can do..
I was also moderate bordering on severe for the first 6 years of my ME/CFS, and it does take much longer to organize anything when you are like this. Especially the steep learning curve of ME/CFS-related medical science.
What are your thoughts on things like TA1 and other such immune system peptides? Some have mentioned interferon drugs as well as hiv drugs but I imagine those are far too heavy hitting and certainly not to be messed about with without a positive test for EVs
When starting out looking at ME/CFS treatments, it's a good to try ones which have shown to be helpful. New and speculative treatments are also interesting, but the tried and tested ones may be a better place to start.
Treatments which have a track record of helping ME/CFS and which are employed by various ME/CFS doctors, or which have been shown effective in studies, include:
GENERAL ME/CFS TREATMENTS:
B12 methylcobalamin injections (or more conveniently, transdermal B12 oils)
Low-dose naltrexone (only works for around 10% of patients, but when it works, it works well)
Abilify (can make major improvements in ME/CFS)
ANTIVIRAL AND IMMUNE BOOSTING ME/CFS TREATMENTS:
Oxymatrine (antiviral immunomodulator) for enterovirus ME/CFS
Epivir for enterovirus ME/CFS
Valcyte (for EBV, HHV-6 or cytomegalovirus ME/CFS)
Valtrex or Famvir (for EBV ME/CFS)
GcMAF as transdermal cream, capsules or injections (immunomodulator)
Tenofovir (antiviral immunomodulator)
BRAIN FOG AND FATIGUE:
Piracetam (good supplement for brain fog)
Methylphenidate (stimulant drug for brain fog and fatigue)
Modafinil (stimulant drug for brain fog)
Pyridostigmine (reduces or eliminates PEM)
D-ribose (to speed up PEM recovery)
Probiotics and prebiotics
Rifaximin (antibiotic for IBS, SIBO or gut dysbiosis)
EXPENSIVE AND HARD TO OBTAIN TREATMENTS:
Ampligen (antiviral immunomodulator) for enterovirus or herpesvirus ME/CFS
IVIG (works well if for pain)
Interferon beta for enterovirus ME/CFS (antiviral immunomodulator, benefits usually do not last)
See also: List of ME/CFS Recovery and Improvement Stories