ME/CFS
Very severe → relapsedIll 14 months before improving or writingNeeds ongoing treatment
ME/CFS after long COVID: improved, then a cold and crash left him bedbound
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 14 months
- Last post
- Apr 2024
In their words
- Condition: ME/CFS
Seems like due to my recent infection I’ve developed the ME/CFS subtype
In context ↗ - At worst: Very severe
Basically I became severe (100% bedbound, can’t do anything)
In context ↗ - Now: Relapsed
i thought that i perhaps made it out of my misery, but now its going strong again
In context ↗ - Began after: COVID
I've had Covid the first time in March of last year, this introduced a clusterfuck of neurological as well as neuropsychiatric symptoms to me.
In context ↗
Read from 117 of their posts and comments; links to the 40 this page draws on
- Jan 2024
- Dec 2023
- Oct 2023
- Nov 2023
- Apr 2023
- Dec 2023
- Jun 2023
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- Jan 2024
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- Apr 2023
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- Dec 2023
Summary
A 23-year-old man developed long COVID after a mild infection in early 2023, with brain fog, nausea, panic, brain zaps and derealisation. He improved over about eight months, then a cold brought fatigue and suspected POTS/PEM. A crash after medical appointments left him fully bedbound by late November 2023, with intermittent lorazepam use and worry about dependence.
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What they tried
What they credit
Also tried
DXM (dextromethorphan)· Helped a lotBisoprolol· Helped a lotDiphenhydramine (Benadryl)· HelpedMeditation, yoga nidra and breathwork· HelpedVagus nerve exercises· HelpedPregabalin (Lyrica)· Helped · wore offHuel Black Edition meal replacement shakes· HelpedIbuprofen· HelpedParacetamol· HelpedCumin capsules· HelpedEasy-to-digest foods· HelpedProbiotics (non-histamine producing)· No changeMagnesium· No changeFamotidine· No changeQuercetin· No changeHeparin (Enoxaparin)· No changeLactoferrin / Apolactoferrin· WorseIron bisglycinate· WorseExercise / gym training· Much worseVitamin C· Not saidB-Complex + Myo-Inositol· Not saidBenfothiamine· Not saidOmega-3· Not saidCoQ10· Not saidSeroquel (quetiapine)· Not said
Their words about each treatment
- Diphenhydramine (Benadryl) · Helped
I’ve found occasional relief from Benadryl, I suppose due to it calming the CNS.
In context ↗ - Probiotics (non-histamine producing) · No change
I'm currently taking probiotics (those that degrade or at least don't higher histamine) since a week, didn't feel any significant change
In context ↗ - Magnesium · No change
I tried Benadryl, magnesium bisglycinate. It made my body tired but in no way my mind.
In context ↗ - Vitamin C · Not said
300mg Vitamin C
In context ↗ - B-Complex + Myo-Inositol · Not said
B-Complex + Myo-Inositol
In context ↗ - Benfothiamine · Not said
Benfothiamine 150mg
In context ↗ - Lactoferrin / Apolactoferrin · Worse
Recently added: Apolactoferrin (Life Extension) 300mg 3x daily
In context ↗ - Iron bisglycinate · Worse
ordered some iron bisglycinate and took 25mg together with the lactoferrin
In context ↗ - Exercise / gym training · Much worse
then got reinfected and resumed exercising and am now bedbound.
In context ↗ - Ativan (lorazepam) · Helped a lot
Ativan is able to almost entirely rid me of any symptoms.
In context ↗ - DXM (dextromethorphan) · Helped a lot
my brain fog/ mental fog almost went completely away
In context ↗ - Radical rest / full bedrest · Helped
It was only after I finally managed to accomplish full bedrest at which symptoms started to improve.
In context ↗ - Meditation, yoga nidra and breathwork · Helped
Yoga nidra is good for calming down in the evening, but does nothing during crashes.
In context ↗ - Vagus nerve exercises · Helped
Vagus nerve exercises are really helpful, I agree.
In context ↗ - Pregabalin (Lyrica) · Helped
Currently on 75mg 2x a day.
In context ↗ - Seroquel (quetiapine) · Not said
my psychiatrist prescribed it to me once, 50mg, should just take when needed
In context ↗ - Huel Black Edition meal replacement shakes · Helped
liquid food, i use Huel black edition unflavored and unsweetened
In context ↗ - Famotidine · No change
tried Famotidine over a week, together with quercetin. It did not help
In context ↗ - Electrolyte drinks · Helped
electrolyte drinks, bulk has a pretty good combination of electrolytes
In context ↗ - Ibuprofen · Helped
pain killers like Ibuprofen/Paracetamol during PEM
In context ↗ - Cumin capsules · Helped
lots of hydration including electrolytes, cumin, easy-to-digest foods, meal replacement shakes.
In context ↗ - Bisoprolol · Helped a lot
My POTS got way better as I started taking Bisoprolol
In context ↗ - MCT Oil · Helped
I’ve had a two week lasting major improvement from taking MCT Oil with my meal replacement shakes
In context ↗ - Heparin (Enoxaparin) · No change
I’ve now been on heparin (4000 IE Enoxaparin) since I’ve made this post
In context ↗
Approaches: POTS medication · Benzodiazepines · Radical rest · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| late February 2023 | mild COVID infection, then neurological and neuropsychiatric symptomsI've had Covid the first time in March of last year, this introduced a clusterfuck of neurological as well as neuropsychiatric symptoms to me.In context ↗ | Mild |
| 2023-04-09 | back at work, anxiety and nausea improvedIn the past three weeks, I returned to work, and my anxiety and nausea have improved.In context ↗ | Mild |
| 2023-06-08 | clear improvement in the third month, with bad days stillAbout three weeks ago, I started noticing some improvements in my conditionIn context ↗ | Mild |
| 2023-06-15 | suspected re-exposure plus lactoferrin and iron brought back brain fog and DPDRSymptoms seemed to worsenIn context ↗ | Moderate |
| 2023-08-10 | symptom-free for a few weeksFor a few weeks, i was even symptom-free.In context ↗ | Mild |
| 2023-08-10 | gagging and dry heaving after eating outi uncontrollably had to dry heave about 10 - 15 timesIn context ↗ | Moderate |
| 2023-10-16 | cold brought new fatigue, tremors and suspected PEMi mostly had neurological symptoms and i have gotten way better. Some of my symptoms came directly back after a cold.In context ↗ | Moderate |
| 2023-10-19 | barely able to reach the toilet, needed a dark roomToday i was barely able to make it to the toilet.In context ↗ | Severe |
| 2023-11-21 | minor improvements, a little more stable on some daysI think I finally am seeing some minor improvements and feel a little more stable on some days.In context ↗ | Severe |
| 2023-11-29 | crashed after two medical appointments; 100% bedbound, urinating in buckets, not showeringSince then I’m fully bedbound, piss in buckets and stopped showering.In context ↗ | Very severe |
| 2024-04-20 | still on sick leave, sleeps from 6pm to 6am and feels better that wayAs I’ve been on sick leave I’ve figured that I might as well switch my sleep pattern, so now I mostly wake up at 6pm and stay up til ~6am, I feel better that way.In context ↗ | Severe |
Adverse events
- Lactoferrin and colostrum“Almost immediately after starting Lactoferrin, I noticed the return of my initial long Covid symptoms: intense brain fog, feelings of derealization and depersonalization, nausea attacks, and a hypoglycemic-like weakness in my limbs.” In context ↗ Made symptoms worse
- Iron infusion / ferritin repletion“Sunday i took another 25mg of iron bisglycinate together with lactoferrin and at some point my brain fog grew into a full type of dpdr feeling” In context ↗ Made symptoms worse
- Dextromethorphan (DXM)“Sometimes however, it induced some very strange sensations, almost like feeling „off“ like in a bad weed high.” In context ↗ Side effects
- Lorazepam (Ativan)“I’ve tried to just quit cold turkey 3 days ago and gave up after 40 hours as it was getting worse and worse. Literally 40 hours of constant, pure torture” In context ↗ Withdrawal problems
- Lorazepam (Ativan)“I seem to be sensitive to withdrawals and tolerance and am stuck between interdose symptoms, especially my sleep has worsened as the Ativan loses its effect until the morning.” In context ↗ Withdrawal problems
- Lorazepam (Ativan)“1 1/2 weeks were enough to let me become dependent enough to experience withdrawals that instantly crashed me” In context ↗ Withdrawal problems
- Diphenhydramine (Benadryl)“I’m trying to substitute with diphenhydramine in the evening, but that is making the fatigue worse.” In context ↗ Made symptoms worse
- Pregabalin (Lyrica)“You feel kind of spaced out the first times you take it. It may make some brain fog worse” In context ↗ Side effects
- Pregabalin (Lyrica)“these issues only showed up after i started the Pregabalin and they seem to show up between doses.” In context ↗ Side effects
- Meditation, yoga, breathwork“as soon as I close my eyes and try to rest/ meditate and the likes, my HRV plummets and it also feels like my HR spikes sometimes. I also almost always feel worse symptom-wise after this type of rest” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
So this is PEM i guess.
In context ↗ - Brain fog
Post-Covid, I returned to work but soon felt weak, dizzy, and unable to think clearly.
In context ↗ - POTS & dysautonomia
Notably, when standing, my pulse often reaches 130.
In context ↗ - Sleep problems
I got severe insomnia.
In context ↗ - Pain & fibromyalgia
i could only cry and everything started to hurt
In context ↗ - Headaches & migraine
The vaccine triggered headaches at the base of my skull
In context ↗ - Gut problems
This escalated into panic, nausea, and vomiting.
In context ↗ - Light & noise sensitivity
sounds, or visuals just as the TV exacerbate it as well
In context ↗ - Breathlessness
struggled to breathe and almost felt like i had the flu
In context ↗ - Heart symptoms & palpitations
my heart was suddenly at 170bpm and I was as weak as ever
In context ↗ - Muscle weakness
my muscles were so weak that I'm slowly starting to lose the strength to even walk
In context ↗ - Neuropathy & tingling
brain zaps (feeling like a weak electric shock, causing a very weird sensation in the head
In context ↗ - Anxiety & low mood
I got kind of suicidal (ideation)
In context ↗ - Flu-like symptoms
from time to time I’m experiencing a somewhat sore throat, runny clogged nose, lots of mucus
In context ↗ - Temperature regulation
i got a hot flush over me
In context ↗
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