Bedridden with ME/CFS at worst, now much better after antibiotics
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 9 years
- Last post
- Jun 2024
In their words
- Condition: ME/CFS
I had CFS since 2015
In context ↗ - At worst: Very severe
I been anything from very severe not being able to speak more than 2-3 words ... I was totally bedridden at one point
- Now: Much better
I’m no longer bedbound and I can travel and go out of the house everyday
In context ↗ - Began after: a bacterial or tick-borne infection
My ME started actually from a bacterial infection.
Read from 45 of their posts and comments; links to the 21 this page draws on
Summary
Zephyr 77336 fell ill with ME in 2015 aged 14-15 and was bedridden for a time; antibiotics for an undetected gut infection brought her to very mild for about five years. New infections including meningitis made her severe again around 2023, and a longer course of antibiotics returned her to mild by early 2024, able to travel and leave the house daily. She still has daily fever, ear pain, POTS, brain fog and PEM.
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What they tried
What they credit
Also tried
Their words about each treatment
- antibiotics · Helped a lot
My baseline permanently improved after my 14 days of antibiotics from severe to mild. but I got new infections and now I’m back down again.
In context ↗ - antimicrobial herbal medicine and teas (artemisia, wormwood, sage) · Helped a lot
I went on antimicrobial herbal medicine and teas which honestly made the biggest different in my case although I’m far from cured
In context ↗ - Equilibrant · Helped a lot
started on Dr John chias Equilibrant, taken with inosine
In context ↗ - inosine · Helped a lot
Equilibrant, inosine and milk thistle. I’m no longer bedbound and I can travel and go out of the house everyday
In context ↗ - B1 hcl (thiamine) · Helped a lot
It was back in 2017 when I went from bedridden to mild CFS ... took me a few months to stop having side effects but oh my, it was definitely worth it
In context ↗ - B12 shots · Helped
Luckily B12 shots 2x a week does help, in a super high dose each time (10mg, 10,000mcg)
In context ↗ - b-100 complex · Helped
I’m on a b-100 complex, magnesium, calcium, potassium and some other stuff and now I don’t bruise that easily
In context ↗ - L-tryptophan · Helped
I also use something called L-tryptophan ... It knocks me out and especially if I combine it with 1mg melatonin
In context ↗ - melatonin · Helped
This year I started taking 1mg melatonin if I wake up too early
In context ↗ - LDN · No change
I started LDN 2 months ago and didn’t notice any improvement, even on 4.5mg
In context ↗ - drops of oregano · Helped
I’m doing drop of oregano but it’s not strong enough. It only takes away the fever but not the fatigue and pain that comes with this
In context ↗ - steroid drop · Worse
the ENT didn’t either and only gave me a steroid drop and it did help in the beginning but now it’s even worse
In context ↗ - Corticosteroid pulses · Worse
From what I’ve read and also my own experience, steroids makes us much much worse long term.
In context ↗
Approaches: Antibiotics · Antivirals · 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 | ME beganI got ME back in 2015 when I was 14-15In context ↗ | Not stated | |
| 2016 | bedridden before gut infection was foundI was totally bedridden at one point and also lost all social life due to it.In context ↗ | Very severe | |
| 2017 | back to school and gym for about five yearsI could work out, participate in gym classes and almost feel normal for years. It lasted 5 yearsIn context ↗ | Mild | Antibiotics (unspecified) |
| 2023 | severe again after meningitis and new infectionsI also developed meningitis and the doctors in my country refused to give me antibiotics and I became severe again 1 year agoIn context ↗ | Severe | |
| 2024-04 | improving after another course of antibioticsI'm now mod and was severe/very severe when I recover my diagnosisIn context ↗ | Moderate | Antibiotics (unspecified) |
| 2024-06 | mild, travelling and out of the house dailyI’m no longer bedbound and I can travel and go out of the house everydayIn context ↗ | Mild | Antibiotics (unspecified) |
Adverse events
- Thiamine / benfotiamine“Yeah I also got that paradoxal reaction when I started. ... took me a few months to stop having side effects but oh my, it was definitely worth it” In context ↗ Side effects
- Low-dose naltrexone“3 days off LDN I can barely read a paragraph? My brainfog, fatigue and everything else got worse and I felt like I was in a bad crash” In context ↗ Withdrawal problems
- Corticosteroid pulses“From what I’ve read and also my own experience, steroids makes us much much worse long term.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
more brainfog and I can barely read, stronger PEM, more fatigue, can’t walk that many steps
In context ↗ - Brain fog
My brainfog, fatigue and everything else got worse and I felt like I was in a bad crash
In context ↗ - POTS & dysautonomia
I’m 23F, ME+POTS for 9 years
In context ↗ - Sleep problems
This year I started taking 1mg melatonin if I wake up too early
In context ↗ - Flu-like symptoms
I now have a fever everyday, a lot of ear pain and ear fullness, got POTS again, brainfog, extreme fatigue, flu like symptoms, sore throat and much more
In context ↗ - Temperature regulation
I now have a fever everyday
In context ↗ - Gut problems
It cleared all my GI issues.
In context ↗ - Headaches & migraine
I had chronic headaches for 2 years and it would be constant 24/7
In context ↗ - Breathlessness
my POTS was so severe I couldn’t breathe probably by just sitting in bed and had to always lay flat down
In context ↗ - Heart symptoms & palpitations
I had hyperPOTS too, so both my HR and BP went up
In context ↗
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