ME/CFS
Severe → much betterIll 8 years before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS for years, much better after methylene blue and ultra-micronized PEA
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 8 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I’ve been struggling with me/cfs for years.
In context ↗ - At worst: Severe
And I was bed bound for years.
In context ↗ - Now: Much better
I am significantly better. I am able to enjoy aspects of life again. I can’t exercise and extended work like cleaning can knock me out for a few hours but I am generally mobile.
In context ↗ - Began after: a bacterial or tick-borne infection
I had a plethora of different— difficult to diagnose and understand— infections that were causing symptoms.
Read from 57 of their posts and comments; links to the 35 this page draws on
Summary
Bluebell 46839 was diagnosed with CFS about eight years before 2022, attributing symptoms to infections including Bartonella. A Moderna vaccine reaction in 2021 caused cytokine storms and hospitalisations, and they were bedbound for years. Treating the infections plus methylene blue and ultra-micronized PEA brought significant improvement; they also take metformin but can't tell if it helps. By 2024 they were mobile though unable to exercise and still had MCAS, with cognitive and pain issues continuing.
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What they tried
What they credit
Also tried
methylene blue· Helped a lottadalafil· Helped a lotselegiline· Helped a lotred light· Helpedacyclovir· Helped5% dextrose IV· Helpedmemantine· HelpedDelta 8 / CBG cannabinoids· Helpedcopper· WorseHBOT· WorseSAM-E· WorseModerna vaccine· Much worseminocycline· Much worseantibiotics· Much worsemethylated supplements· Not said4.5 day fast· Not saidmetformin· Not saidWellbutrin· Not saidlamictal· Not saidcolostrum· Not saidprobiotics and kefir· Not said
Their words about each treatment
- Moderna vaccine · Much worse
If I could go back in time and do anything in my life it would be to not get the moderna vaccine.
In context ↗ - prednisone · Helped a lot
I think they saved my life.
In context ↗ - pramipexole · Helped
I had to take large doses of prednisone, pramipexole (cytokine antagonist effects), gabapentin, and ibudilast to get it under control.
In context ↗ - gabapentin · Helped
Im luckily down to just the gabapentin from that mix.
In context ↗ - ibudilast · Helped
But sleep is a lot better. Def reduces inflammation.
In context ↗ - methylated supplements · Not said
I had to take methylated supplements before this for mthfr.
In context ↗ - copper · Worse
I will swing into a rage
In context ↗ - methylene blue · Helped a lot
Methylene blue reduced all my food sensitivities by 95% within a few days and 99% after 6-8 months.
In context ↗ - red light · Helped
I find it to be efficacious at dealing with my symptoms.
In context ↗ - acyclovir · Helped
I found acyclovir to help with EBV when I had it
In context ↗ - minocycline · Much worse
Was put on minocycline for Lyme and other tick borne diseases. The herxing was horrific.
In context ↗ - antibiotics · Much worse
I cannot stress enough how quickly this can cascade. I was taking a VERY small amount of antibiotics.
In context ↗ - 5% dextrose IV · Helped
A few liters of 5% dextrose solution in my veins and I’m already doing much better.
In context ↗ - freddds protocol · Helped
I followed freddds protocol on phoenix rising and it helped me a good deal.
In context ↗ - Ultra micronized PEA · Helped a lot
It’s fantastic. I’m so much more fluent on the phone. My body doesn’t hurt so bad.
In context ↗ - luteolin · Helped
Ultra micronized PEA (must be ULTRA) and luteolin seems to show some promise. Makes me feel a lot better.
In context ↗ - tadalafil · Helped a lot
I’ve found tadalafil works wonders for me but only 24 hours after taking it.
In context ↗ - CPAP · Helped
It did help me a lot over time.
In context ↗ - 4.5 day fast · Not said
I did a 4.5 day once.
In context ↗ - metformin · Not said
I couldn’t tell you if Metformin is helping me since I haven’t not taken it.
In context ↗ - selegiline · Helped a lot
Selegiline made it go away.
In context ↗ - Wellbutrin · Not said
I found it much more effective than Wellbutrin with fewer side effects.
In context ↗ - memantine · Helped
I feel like it has done a lot for my physical pain.
In context ↗ - HBOT · Worse
HBOT gives me Terrible panic attacks after a few days of sessions and I wish I could figure out why.
In context ↗ - SAM-E · Worse
I’ve taken SAM-E a few times before. I mixed it with methylene blue early on while taking it, not thinking, and it was.. unpleasant.
In context ↗ - lamictal · Not said
I take lamictal to help offset my issues because of this.
In context ↗ - mold remediation · Helped
Fixed it and started to get better.
In context ↗ - Delta 8 / CBG cannabinoids · Helped
I’ve never had better pain relief from the different cannabinoids.
In context ↗ - colostrum · Not said
So I’ve started taking colostrum.
In context ↗ - probiotics and kefir · Not said
Next I’m going to go up on probiotics. I eat kefir daily.
In context ↗
Approaches: Mould avoidance · Other drugs and medicines · 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 7 years 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 |
|---|---|---|
| 2014 | diagnosed with CFS; active Bartonella and other infectionsI was diagnosed with cfs ten 8 years ago.In context ↗ | Not stated |
| 2021 | Covid twice, followed by severe MCAS and food sensitivitiesI have bad mcas since what i think was Covid twice in 2021.In context ↗ | Moderate |
| 2021 | Moderna vaccine reaction, cytokine storms and hospitalisations; bedbound for yearswithin two hours I completely went fucking insane with cytokine storms.In context ↗ | Severe |
| 2024-02 | treating infections; mobile and able to walk a trailI am significantly better. I am able to enjoy aspects of life again.In context ↗ | Mild |
| 2025-07 | cracked back too hard, symptoms returnedI adjusted my back too much and too hard and a lot of symptoms came rushing back.In context ↗ | Mild |
| 2026-08 | continuing methylene blue, PEA, metformin; selegiline helpfulSelegiline is a lovely thingIn context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“I had a horrific reaction to the covid vaccine. I’ve been advised to not get the second it was so debilitating.” In context ↗ Side effects
- COVID vaccination as treatment“After my profoundly negative reaction to moderna, which I was hospitalized several times for” In context ↗ Hospitalisation
- COVID vaccination as treatment“I rapidly dissolved into cytokine storms that left me in a semi conscious state filled with sheer unadulterated horror.” In context ↗ Autoimmune or inflammatory flare
- Corticosteroid pulses“Prednisone is a godsend. But for the love of god, watch out for candida. It bit me hard.” In context ↗ Gut side effects
- Red and near-infrared light therapy“I have light therapy but it’s too Strong for me.” In context ↗ Side effects
- Minocycline“Was put on minocycline for Lyme and other tick borne diseases. The herxing was horrific. And it continued after I stopped them at the doctors orders.” In context ↗ Herx / die-off reaction
- Minocycline“My conditioned kept getting worse until a family member looked into chlamydia pneumonia and learnt that treating it with minocycline and hitting it too hard can cause secondary porphyria— for which I had all the symptoms.” In context ↗ Made symptoms worse
- Antibiotics (unspecified)“I seem to get very bad secondary acute porphyria from any antibiotic that kills chlamydia pneumonia and that includes ones in trying to use for the tick borne diseases.” In context ↗ Made symptoms worse
- Corticosteroid pulses“I got one from using prednisone. And it’s REALLY annoying and hard to get rid of. Depression, anxiety, awful.” In context ↗ Mood or psychiatric effects
- Ibudilast (MN-166)“It tends to make me feel very irritable— to the point I dont want to take it- and it last for a few weeks after I stop it.” In context ↗ Mood or psychiatric effects
- Hyperbaric oxygen (HBOT)“HBOT gives me Terrible panic attacks after a few days of sessions and I wish I could figure out why.” In context ↗ Mood or psychiatric effects
- Methylene blue“I mixed it with methylene blue early on while taking it, not thinking, and it was.. unpleasant. I didn’t go full serotonin syndrome but damn it taught me a lesson” In context ↗ Side effects
- Palmitoylethanolamide (PEA)“The only issue I had was some mild insomnia for one night.” In context ↗ Insomnia from treatment
- “if I use it chronically then it just starts to amplify pain.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsMast cell (MCAS) & allergiesNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
extended work like cleaning can knock me out for a few hours
In context ↗ - Brain fog
I believe that my cognitive issues are not coming from just covie.
In context ↗ - Sleep problems
by day three off my sleep becomes atrocious
In context ↗ - Pain & fibromyalgia
it has done a lot for my physical pain
In context ↗ - Neuropathy & tingling
tingling/needles in hands and feet. Mild.
In context ↗ - Anxiety & low mood
Adrenaline is going wild. Anxiety.
In context ↗ - Gut problems
I got one from using prednisone.
In context ↗ - Flu-like symptoms
General feeling of malaise
In context ↗
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