ME/CFS
Severe → relapsedIll 9.5 years before improving or writing
Bedbound with ME/CFS for nine months, later moderate, then severe again after H. pylori
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 9.5 years
- Last post
- Oct 2024
In their words
- Condition: ME/CFS
I was diagnosed with MECFS in January of 2018.
In context ↗ - At worst: Severe
I'm back in bed 95% of the time and it has been really difficult.
In context ↗ - Now: Relapsed
I went from severe to moderate for several years. In November of '23 I came down with H Pylori and have been downgraded to severe again.
In context ↗ - Began after: glandular fever or EBV
I clearly remember the day when I came down with EBV.
Read from 70 of their posts and comments; links to the 34 this page draws on
Summary
After an EBV reactivation in January 2015, at 56, the user was bedbound for nine months, then had late-stage Lyme disease (possibly a reactivation) and was diagnosed with ME/CFS in 2018. Years of moderate illness ended when an H. pylori infection in November 2023 dropped them back to severe; they had been homebound since 2015 and were in bed about 95% of the time. Cannabis and kratom eased their pain, but nothing restored their function; in October 2024 they were still in pain and mostly bedbound.
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What they tried
What they credit
Also tried
trauma-informed therapy with EMDR· Helpedlong term abx treatment for Lyme, Bartonella, and Babesia· Helpedrest and pacing· Helpedhypnosis· Helpeda glass of wine· Helped · wore offKlonopin· HelpedAmbien· Helped · wore offHuso (thisishuso.com)· Helpednicotine patch· HelpedKratom· Helpedtwo antibiotics and a proton pump inhibitor (PPI)· Helpedmeditation· Helpedadjustable bed· HelpedDiphenhydramine HCI· Helpedhigh dose vitamin D· No changeCPAP· No changemagnesium· No changeMelatonin· No changeWeight Watchers· No changefish oil· No changedrinking a minimum of 64 oz of liquid a day· No changeCovid vaccine/booster· Worsesupplements from a Functional Medicine Dr· Not said
Their words about each treatment
- trauma-informed therapy with EMDR · Helped
I've had the most success with trauma-informed therapy with EMDR.
In context ↗ - long term abx treatment for Lyme, Bartonella, and Babesia · Helped
I went through the long term abx treatment for Lyme, Bartonella, and Babesia ... I was able to recover and it probably affected my gut big time.
In context ↗ - Covid vaccine/booster · Worse
I just got my 5th booster and suffered a flare for about a month but recovered back to my baseline.
In context ↗ - cannabis · Helped a lot
Cannabis was a game-changer for me. I don't think I would still be around if it weren't for that plant.
In context ↗ - rest and pacing · Helped
I rest and don't push myself so only lasts for a couple of weeks. ... If I don't it will always come and bite me in the rear end.
- high dose vitamin D · No change
I have to take a high dose of Vit D to get my levels to be normal.
In context ↗ - CPAP · No change
I also have to wear a CPAP which doesn't help me sleep any better.
In context ↗ - hypnosis · Helped
I have recently done hypnosis which really helped me fall asleep much better but am still waking up every few hours.
In context ↗ - a glass of wine · Helped
Right now alcohol is helping but I'm sure in a few months it will stop and will start making it worse.
In context ↗ - Klonopin · Helped
The only thing with Xanix is it doesn't last long. I got more benefit from Klonopin.
In context ↗ - Ambien · Helped
When I took Ambien that lasted for about a year.
In context ↗ - supplements from a Functional Medicine Dr · Not said
Sometimes supplements bother me but I see a Functional Medicine Dr so I take a ton.
In context ↗ - Huso (thisishuso.com) · Helped
I recently purchased ... and it seems to be helping a great deal.
In context ↗ - nicotine patch · Helped
I found placing on a nicotine patch a little bit before my appointment helps get me through.
In context ↗ - Kratom · Helped
I use Kratom for my neuropathy pain and that also seems to help somewhat with my ADHD symptoms.
In context ↗ - two antibiotics and a proton pump inhibitor (PPI) · Helped
I did the two antibiotics and a proton pump inhibitor (PPI) for two weeks and that got rid of it.
In context ↗ - magnesium · No change
I have tried different kinds of magnesium and haven't found one that is better than others for sleep.
In context ↗ - meditation · Helped
I also find 5 to 10 minutes of meditation helps.
In context ↗ - Melatonin · No change
IDT it does anything for me.
In context ↗ - Weight Watchers · No change
the only success I've had losing weight when I can't exercise is with Weight Watchers. I use the app.
In context ↗ - adjustable bed · Helped
I have an adjustable bed and I'll never go back to a regular bed. It was life-changing.
In context ↗ - fish oil · No change
I take it but I haven't noticed any changes in my brain fog or health.
In context ↗ - Diphenhydramine HCI · Helped
I have horrible insomnia but this will always come through for me when I'm desperate.
In context ↗ - drinking a minimum of 64 oz of liquid a day · No change
drink a minimum of 64 oz of liquid a day and while helpful for other reasons does nothing for my CFS
In context ↗
Approaches: Other drugs and medicines
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. 1 step has no time and sits in story order between the steps around it. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| January 15, 2015 | EBV reactivation; legs wouldn't work, in bed nine monthsIt was January 15th, 2015 and I was skiing at our local ski resort. All of a sudden I felt like my legs wouldn't work.In context ↗ | Severe |
| spring 2015 | recovered for about six weeks, then came down with Lyme diseaseI recovered in the spring for about six weeks but since I spent almost every day out in the woods riding my horse and camping I either came down with Lyme DiseaseIn context ↗ | Near normal |
| 2015-2017 | late-stage Lyme disease treated, then ME/CFS symptoms appearedI sought treatment for Late Stage Lyme Disease and recovered from those symptoms but then it was apparent something else was terribly wrong.In context ↗ | Severe |
| January 2018 | diagnosed with ME/CFS; went from severe to moderate for several yearsI went from severe to moderate for several years.In context ↗ | Moderate |
| November 2023 | H. pylori infection; back in bed 95% of the timeIn November of '23 I came down with H Pylori and have been downgraded to severe again. I'm back in bed 95% of the time and it has been really difficult.In context ↗ | Severe |
| June 27, 2024 | able to fold a basket of clothes after nine monthsI was able to fold a basket of my clothes today. I haven't been able to do that for nine months.In context ↗ | Severe |
| September 3, 2024 | coming out of a very big crashYes, I'm just coming out of a really big crash where I felt exactly like you.In context ↗ | Severe |
| October 19, 2024 | still in pain and feeling unwell most of the timeThis is why I am high most of the time. I'm so tired of being in pain and feeling like crap.In context ↗ | Severe |
Adverse events
- COVID vaccination as treatment“I just got my 5th booster and suffered a flare for about a month but recovered back to my baseline.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I also experience a crash my Covid Vaccine but I have always recovered. I rest and don't push myself so only lasts for a couple of weeks.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“With that vaccine I experience a crash for three or four weeks but I'd much rather experience that then go through being sick with Covid.” In context ↗ Made symptoms worse
- Lyme / co-infection protocols“I was able to recover and it probably affected my gut big time.” In context ↗ Gut side effects
- Nicotine patches“I tried the nicotine gum and it was just way too much nicotine for me.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsMuscle weaknessNeuropathy & tinglingPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I've been in a horrible CFS flare after my H Pylori diagnosis and was suffering terribly with PEM.
In context ↗ - Brain fog
Other than brain fog and cognitive decline I haven't experienced any other neurological brain symptoms.
In context ↗ - Sleep problems
I have horrible insomnia and it is very hard on my body, especially with CFS.
In context ↗ - Pain & fibromyalgia
I have to use a massive amount of cannibas at times to manage my pain and the flu like feelings.
In context ↗ - Neuropathy & tingling
I use Kratom for my neuropathy pain and that also seems to help somewhat with my ADHD symptoms.
In context ↗ - Gut problems
I started having gastro issues about four years ago, three years after my MECFS diagnosis.
In context ↗ - Flu-like symptoms
the pain on top of feeling like I have the flu on top of a hangover makes it difficult to handle sometimes
In context ↗ - Anxiety & low mood
I get this way and I attribute it to anxiety.
In context ↗ - Muscle weakness
All of a sudden I felt like my legs wouldn't work.
In context ↗
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