ME/CFS
Severe → somewhat betterIll 2 years before improving or writingNeeds ongoing treatment
Lying in bed most of the day with ME/CFS and brain fog, somewhat better with supplements
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Mar 2019
In their words
- Condition: ME/CFS
He diagnosed me with CFS in his opinion from Epstein Barr.
In context ↗ - At worst: Severe
The times I was bedridden. It was very little out of bed.
In context ↗ - Now: Somewhat better
Im at a better place now.
In context ↗
Read from 64 of their posts and comments; links to the 37 this page draws on
Summary
Beacon 67695's fatigue began in 2015; CFS was diagnosed in January 2017, with past EBV blamed. By 2017 she lay in bed most of the day with brain fog, and 60mg Adderall did not keep her awake. From mid-2017 supplements (NADH with CoQ10, D-ribose, creatine, EPA/DHA, B12 injections, kefir) eased the fog and shortened naps. A flu before Christmas 2017 and follow-on infections set her back; by March 2018 she felt better, though it came and went.
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What they tried
What they credit
Also tried
nuvigil· Helpedklonipin· Helpedimmitrex· Helped · wore offweed· Helpedpromethazine· HelpedIV fluids· Helpedtrileptal· Helpedzoloft· Helpedadderall ritalin· No changeadderall ritalin· No changemetformin· No changetherapy· No changemethylcobalamin pills· No changevitamins· No changeibuprofen· No changeprobiotics· No changedoxy· Worsezofran· Worseamantadine· Worselatuda· Worseanti-depressants· Worseabilify· Much worseseroquel· Much worselamictal· Much worseamino acids· Not saidexcedrin· Not saidBC powder· Not saidcaffeine pill· Not saidpacing and strict rest· Not said
Their words about each treatment
- adderall ritalin · No change
I was on adderall and other stimulants at high doses and I would still sleep as much as I could. It did nothing for me.
In context ↗ - nuvigil · Helped
Im on nuvigil now and I like it.
In context ↗ - metformin · No change
I take 1000mg for insulin resistance. Lost weight but zero help for cfs
In context ↗ - klonipin · Helped
I do have klonipin which has been a lifesaver for making sure I sleep
In context ↗ - therapy · No change
Im in therapy and have been for 2 years. Not really helping any physical problems I have
In context ↗ - methylcobalamin pills · No change
I certainly didnt feel better either
In context ↗ - Sam e · Helped
I've had 3 good days in a row taking Sam e.
In context ↗ - vitamins · No change
I do take a ton of vitamins though just to i dunno help out in case. It hasnt helped.
In context ↗ - amino acids · Not said
is take amino acids
In context ↗ - ibuprofen · No change
Its just not working anymore.
In context ↗ - immitrex · Helped
It did help initially but its just not anymore.
In context ↗ - excedrin · Not said
I just took excedrin.
In context ↗ - BC powder · Not said
I took a pack of BC powder.
In context ↗ - caffeine pill · Not said
I take 200mg in the am.
In context ↗ - weed · Helped
The only thing that helped was smoking weed.
In context ↗ - doxy · Worse
Im on doxy after a trial of amoxi and my ears are still messed up.
In context ↗ - zofran · Worse
I took it when I needed it and I was so constipated. It was horribly painful
In context ↗ - B12 shots · Helped
It really helped me. I order online.
In context ↗ - D-Ribose · Helped
D-Ribose makes a big difference for me I think.
In context ↗ - NADH with coq10 · Helped a lot
This was the first thing I started that had the best impact on fatigue of both kinds.
In context ↗ - creatine · Helped
This is new as of a week, but I have a fitbit and my activity has increased without pushing myself or having exercise plans at all.
In context ↗ - DHA and EPA · Helped
I just happened to start taking high dose Omegas for depression and the fog went away
In context ↗ - niacin · Helped
I take 500mg and the flush gives me clarity and some energy.
In context ↗ - probiotics · No change
I bought some probiotics and didn't notice a difference.
In context ↗ - kefir · Helped
Kefir however, has tons more beneficial yeast and bacteria from what I've read and is making a difference.
In context ↗ - promethazine · Helped
promethazine 1/2 to 1 25mg tab gives me really restful sleep
In context ↗ - amantadine · Worse
Amantadine made me more tired unfortunately.
In context ↗ - IV fluids · Helped
Ive felt so much better every time Ive had IV fluids.
In context ↗ - pacing and strict rest · Not said
scheduling strict rest between 2 and 5
In context ↗ - abilify · Much worse
abilify caused tremors so bad I couldnt feed myself
In context ↗ - seroquel · Much worse
Seroquel.made me make and eat sandwiches in my sleep. Worst med ever.
In context ↗ - latuda · Worse
latuda gave me tongue spasms that are really painful
In context ↗ - lamictal · Much worse
Lamictal gave me liver toxicity within a month
In context ↗ - trileptal · Helped
trileptal made me feel great, but gave me hives
In context ↗ - zoloft · Helped
I think its working well enough
In context ↗ - anti-depressants · Worse
Im banned permanently from all anti-depressants bc they make me agitated and aggressive.
In context ↗
Approaches: Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 12 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2015 | Fatigue beganTired for almost 2 years now.In context ↗ | Not stated | |
| 2016 | Worst period, heavy brain fog, lying down much of the dayLast year was especially bad and beginning this year the brain fog was my worst symptomIn context ↗ | Severe | |
| mid-2017 | Supplements eased fog and shortened napsI only needed a 45 min reset nap and was able to continue onIn context ↗ | Moderate | NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP) |
| December 2017 | Crashed after flu and secondary infections; 8 steps on the worst dayI had the flu a couple days before xmas. I was super sickIn context ↗ | Severe | |
| March 2018 | In a better place, though improvement came and wentIm at a better place now ... I seem to have periods of better and then back to square oneIn context ↗ | Moderate |
Adverse events
- Sertraline (Zoloft), Antidepressants (unspecified)“The heartburn just got worse for me and then I got bad hand tremors too.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“abilify caused tremors so bad I couldnt feed myself” In context ↗ Side effects
- Quetiapine (Seroquel)“seroquel made me sleep walk and feel like a zombie” In context ↗ Side effects
- Lurasidone (Latuda)“latuda gave me tongue spasms that are really painful” In context ↗ Side effects
- Lurasidone (Latuda)“The first week off Latuda I had suicidal thoughts and almost got committed by my therapist.” In context ↗ Suicidal thoughts or attempt
- Lamotrigine (Lamictal)“Lamictal gave me liver toxicity within a month” In context ↗ Liver or kidney problems
- Oxcarbazepine (Trileptal)“trileptal made me feel great, but gave me hives” In context ↗ Allergic reaction / anaphylaxis
- Sertraline (Zoloft), Antidepressants (unspecified)“Im banned permanently from all anti-depressants bc they make me agitated and aggressive.” In context ↗ Mood or psychiatric effects
- “Anti-psychotics gave me insulin resistance which is the start of metabolic syndrome” In context ↗ Other
- “I put on some with anti-psychotics and had a near impossible time losing it” In context ↗ Other
- “I have permanent tremors that are much better now, but still there and involuntary hand and feet movements.” In context ↗ Other
- Amantadine“Amantadine made me more tired unfortunately.” In context ↗ Made symptoms worse
- Doxycycline (Vibramycin)“I just last night literally diarrhea shit my pants because Im on doxy” In context ↗ Gut side effects
- Doxycycline (Vibramycin)“the emergency of that makes me unable to sleep about 6 or 8 hours after I take it” In context ↗ Insomnia from treatment
- Doxycycline (Vibramycin)“Then got thrush from all the antibiotics in my mouth” In context ↗ Other
- Ondansetron (Zofran)“I took it when I needed it and I was so constipated. It was horribly painful” In context ↗ Gut side effects
- “I was on a medication unrelated that made me feel sick.” In context ↗ Gut side effects
- Vitamin B12“If I get too much b12, I get agitated so I wanted to see what felt right for me.” In context ↗ Mood or psychiatric effects
- Vitamin B12“I have a genetic variant called MTHFR that messes up that kind of B12. ... I felt like an anxiety attack” In context ↗ Mood or psychiatric effects
- “I dont bc I cant tolerate the form of b vitamins and folate in them” In context ↗ Side effects
- Caffeine and coffee“At this point, Im addicted to it bc I will get headaches.” In context ↗ Withdrawal problems
- Promethazine (Phenergan)“I cannot take it during the day bc I pass out” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineLight & noise sensitivityMuscle weaknessPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I did have PEMS
In context ↗ - Brain fog
the brain fog was my worst symptom
In context ↗ - Sleep problems
I had such restless sleep
In context ↗ - Pain & fibromyalgia
pain that feels like body aches from the flu
In context ↗ - Headaches & migraine
Im getting migraines 3 or 4 times a week
In context ↗ - Light & noise sensitivity
the buzzing of sound made it intolerable
In context ↗ - Muscle weakness
It felt like each shirt I folded weighed 10lbs
In context ↗ - Temperature regulation
it feels like Im just hot and cold
In context ↗ - Anxiety & low mood
Ive noticed some feelings of depression and hopelessness
In context ↗
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