ME/CFS
Mild → near normalIll 2.5 years before improving or writingNeeds ongoing treatment
Mild to moderate ME/CFS, now nearly back to normal on antivirals
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 2.5 years
- Last post
- Sep 2016
In their words
- Condition: ME/CFS
I got sick with virally-induced CFS a few years ago
In context ↗ - At worst: Mild
I was mild/moderate when I first became sick and after the first year was only mildly affected
In context ↗ - Now: Near normal
I'm basically functionally recovered as of now (although I still have weeks/days when I become stronger/more clear-headed, so I'm not 100% recovered yet)
In context ↗ - Began after: another virus
I became sick with "the flu" about 4 1/2 years ago
In context ↗ - Says they never had: Pain & fibromyalgia
I've never had chronic pain
Read from 55 of their posts and comments; links to the 26 this page draws on
Summary
Tundra 44587 fell ill with a flu-like virus at 24 and was mild to moderately affected for about two and a half years, with crashes after exertion, brain fog, headaches, vision and chemical sensitivities. From month 30 he took Acyclovir, then Valtrex; over the next two years most symptoms disappeared and by 2016 he called himself functionally fully recovered, though not 100%, and still on antivirals daily. Mouldy environments had triggered brief relapses earlier, but by 2016 those sensitivities had disappeared.
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What they tried
What they credit
Also tried
Prescription anti-inflammatories (Etodolac, NSAIDs)· HelpedD-Ribose· HelpedTryptophan· HelpedFlu shot· HelpedEquilibrant (oxymatrine)· No changeDoxycycline / Flagyl· No changeDoxycycline / Flagyl· No changeOral NAD+ supplements· No changeGeneral B vitamin supplement· No changeProbiotics· No changeAnti-depressants· No changeDiflucan (fluconazole)· WorseWellbutrin· WorseCoQ10· Not saidMultivitamin· Not said
Their words about each treatment
- Acyclovir · Helped
had been taking weaker form called Acyclovir for 4 months before that (which also helped, but not nearly as much as Valtrex)
In context ↗ - Valtrex (valacyclovir) · Helped a lot
I started at 3grams/day but reduced down to 2grams/day after discovering that Valtex causes anxiety/psychological side effects for me.
In context ↗ - Equilibrant (oxymatrine) · No change
it had no effect on my core disease process at the time ... in my case it was about as effective as taking antibiotics for a case of the flu
In context ↗ - Doxycycline / Flagyl · No change
While it has beaten the Lyme into submission, it didn't have any effect on the vestigial symptoms I have.
In context ↗ - Diflucan (fluconazole) · Worse
I did take diflucan for candidiasis about a year ago and my experience with the resulting herx was very similar to what you're describing: anxiety, fatigue and a general mental "fuzziness"
In context ↗ - AHCC · Helped
Niacinamide, AHCC, NADH and DHA also reduced my symptoms
In context ↗ - Prescription anti-inflammatories (Etodolac, NSAIDs) · Helped
I had some improvement with NADH, Niacinamide and prescription anti-inflammatories ... It actually caused an *increase* in cognitive fugue ... but my body felt much better while taking it.
- Niacinamide / Niacin · Helped
I took 500mg about six hours ago ... I tried taking high doses of Niacin, which caused an initial increase in energy followed by a crash
- NADH / NADP · Helped
I had some improvement with NADH, Niacinamide and prescription anti-inflammatories
In context ↗ - Oral NAD+ supplements · No change
NAD+ supplements were little better than sugar pills. Apart from mild skin changes I didn't notice any effect.
In context ↗ - 5-HTP · Helped
(5HTP helped as well, but wouldn't have cured me by itself)
In context ↗ - D-Ribose · Helped
I've also found D-Ribose, Nicotinamide, 5-HTP and NADP to ease symptoms specific to CFS.
In context ↗ - Tryptophan · Helped
I had tried oxymatrine, niacin, tryptophan, B-vitamins and non-steroidal anti-inflammatories before I tried Valtrex/Acyclovir, and while some of them ameliorated the symptoms none were as effective as prescription antivirals.
In context ↗ - CoQ10 · Not said
COQ10 and a good multivitamin are good background supplements.
In context ↗ - General B vitamin supplement · No change
I took a general B vitamin supplement but didn't notice any strong effect from it.
In context ↗ - Probiotics · No change
I tried pro-biotics but didn't notice any significant changes from them.
In context ↗ - Flu shot · Helped
I always feel healthier and stronger after vaccinations, like my immune system is being given something real to fight against.
In context ↗ - Resting and pacing · Helped
I was very careful to never overexert myself, advice that I gleaned from reading fora like this one
In context ↗ - Improving on its own · Helped
I began to improve on my own 6 weeks after the initial onset
In context ↗ - Anti-depressants · No change
I was aware that this was clinical depression at the time and was taking anti-depressants (which didn't fix any problems).
In context ↗ - Wellbutrin · Worse
some things (such as wellbutrin) can still cause my symptoms to flare
In context ↗
Approaches: Antivirals · Pacing · Supplements
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2011 | viral onset ('the flu')I became sick with "the flu" about 4 1/2 years agoIn context ↗ | |
| two months after onset | began to improve slowly on his ownthe symptoms started to get mildly better about two months after "the flu" endedIn context ↗ | |
| month 30 | started AcyclovirI started taking Acyclovir around month 30 and upgraded to Valtrex around month 32In context ↗ | Acyclovir |
| a few months into Valtrex, 2014 | vision and energy improving but PEM slightly worseat some times I could only walk for about 15 minutes without feeling mentally and physically drainedIn context ↗ | Valtrex / valacyclovir |
| February 2015 | could walk and jog without crashesI can basically walk, jog, etc... without any crashesIn context ↗ | Valtrex / valacyclovir |
| May 2015 | crashed after hiking with a weighted backpackthe crash was mild and only lasted for 30 minutesIn context ↗ | |
| October 2015 | described himself as 98% recoveredAt this point after 16 months I'd say that I'm 98% recoveredIn context ↗ | Valtrex / valacyclovir |
| November 2015 | one-day reaction after sleeping on an old, dirty mattressThe last strong environmental reaction I had was last November when I slept on an old, dirty mattress, which caused disorientation/fatigue/brain fog, but that abated within a day.In context ↗ | |
| August 2016 | functionally recovered but not 100%basically functionally recovered as of now (although I still have weeks/days when I become stronger/more clear-headed, so I'm not 100% recovered yet)In context ↗ | Valtrex / valacyclovir |
Adverse events
- Metronidazole (Flagyl)“I'm actually taking Flagyl right now and haven't experienced anything other than an upset stomach, but everyone reacts differently.” In context ↗ Gut side effects
- Fluconazole (Diflucan)“I did take diflucan for candidiasis about a year ago and my experience with the resulting herx was very similar to what you're describing: anxiety, fatigue and a general mental "fuzziness"” In context ↗ Herx / die-off reaction
- Bupropion (Wellbutrin)“Some days are worse than others, and some things (such as wellbutrin) can still cause my symptoms to flare” In context ↗ Made symptoms worse
- Valtrex / valacyclovir“My PEM actually worsened slightly after I began to take it, as at some times I could only walk for about 15 minutes without feeling mentally and physically drained.” In context ↗ Made symptoms worse
- “I am a crazy person on the internet who is having a bad reaction to medication and you should not listen to me.” In context ↗ Mood or psychiatric effects
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“I started taking Niacinamide about 14 months ago and initially had a combination of crashes/increases in energy (as odd as that sounds) after taking it” In context ↗ Made symptoms worse
- Niacin (vitamin B3)“I tried taking high doses of Niacin, which caused an initial increase in energy followed by a crash (or sometimes both simultaneously, as odd as it sounds).” In context ↗ Made symptoms worse
- “It actually caused an *increase* in cognitive fugue (I often passionately rooted for the wrong teams while watching world cup games last summer)” In context ↗ Side effects
- Valtrex / valacyclovir“Valtex causes anxiety/psychological side effects for me.” In context ↗ Mood or psychiatric effects
- Oxymatrine / Equilibrant“I immediately had a weird feverish reaction to it (which I had read was a positive sign), but after that it had no effect on my core disease process at the time.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineMuscle weaknessNeuropathy & tinglingPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
I'd often feel very sick and tired after exercising
In context ↗ - Brain fog
most of the malaise, mental fog and constant "fluish" feelings have faded away
In context ↗ - Sleep problems
my stupid brain hasn't been letting me sleep for more than 5 hours per night for the past week
In context ↗ - Headaches & migraine
I would always have a strong, throbbing pain in the center of my brain
In context ↗ - Gut problems
I had dysbiosis, food sensitivities and candida (white tongue, cracking joints and fungal rashes growing on my neck) when I was sicker
In context ↗ - Vision problems
my vision and ability to track objects has markedly improved
In context ↗ - Neuropathy & tingling
the only symptom I'm aware of is occasional tingling in my lower legs/calves
In context ↗ - Anxiety & low mood
I've also had breakdowns consisting of crying/rage since I became sick
In context ↗ - Flu-like symptoms
constant "fluish" feelings have faded away
In context ↗ - Muscle weakness
sleeping in very dirty or moldy environments can still trigger 24-hour relapses of brain fog and weakness for me
In context ↗
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