Long COVID
Very severe → somewhat betterIll 4 years before improving or writing
Bedbound with long COVID, some gains after ketotifen and LDN but still 99% bedridden
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 4 years
- Last post
- Nov 2024
In their words
- Condition: Long COVID
Got LC in 2020 and got treated with: extensive exercise!
In context ↗ - At worst: Very severe
I'm now in a powered wheelchair to go to the bathroom, 99% bedridden and can only leave the house in an ambulance.
In context ↗ - Now: Somewhat better
I'm severe and was extremely severe
In context ↗ - Began after: COVID
When we both got covid and LC he went to bed immediately
- Says they never had: Anxiety & low mood
I'm very severe with ME but have no anxiety or depressive symptoms whatsoever.
Read from 66 of their posts and comments; links to the 29 this page draws on
Summary
Developed long COVID in 2020 with POTS, fainting and post-exertional malaise; prescribed graded exercise left her increasingly bedbound and hospitalised. A severe MCAS flare with repeated anaphylaxis nearly killed her in 2022. Ketotifen, LDN, ivabradine, a low-histamine diet and a stellate ganglion block brought slow gains. By 2024 she was still very severe, 99% bedridden, using a powered wheelchair to reach the bathroom and only leaving home by ambulance.
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What they tried
What they credit
Also tried
Ivabradin· Helped a lotPaxlovid· Helped a lotomega3 capsules· HelpedPEA· Helpedmeditation and neurotraining· HelpedTBI/stroke brain-rest strategies· HelpedNattokinase· No changeprescribed sport / pushing through· Much worseCromolyn· Much worsecortisone shots· Not saidUbiquinol from Kaneka· Not saidBaby Aspirin· Not saidVitamin D drops (Sunday.de)· Not saidmelatonine· Not said
Their words about each treatment
- super low histamine diet · Helped
the super low histamine diet without gluten and lactose, which helps more than anything else
In context ↗ - prescribed sport / pushing through · Much worse
Got told to just push through, I loved sport so I did it. I ended up hospitalised for extreme pots and mcas
In context ↗ - Desloratadin / antihistamines · Helped
It got better with a histamine free diet, Ketotifen and loads of antihistamines.
In context ↗ - cortisone shots · Not said
I got high doses of antihistamines and cortisone shots.
In context ↗ - Ketotifen · Helped a lot
Ketotifen brought me back from only tolerating three foods and being hospitalised, like it's my mcas miracle drug
In context ↗ - Cromolyn · Much worse
I was hospitalised for a bad reaction to Cromolyn
In context ↗ - Stellate ganglion blockage · Helped a lot
A SGB saved my life, I was a bit worse than her before it.
In context ↗ - LDN · Helped a lot
I'm on 2 mg, because more gloves me migraines, but the 2mg already Hel a lot
In context ↗ - Ivabradin · Helped a lot
I only take half the normal dose of Ivabradin, but that's already an incredible big help!
In context ↗ - omega3 capsules · Helped
What helped too were omega3 capsules, I can only tolerate molecular distilled ones and have to take it with food, so it won't touch my mouth, but it helps.
In context ↗ - PEA · Helped
Nothing helped, after a week of omega3 it started to heal. PEA too.
In context ↗ - NADH rapid sublingual (Dr. Birkmayer) · Helped
I use the NADH rapid sublingual from Dr. birkmayer and it helps a lot.
In context ↗ - Ubiquinol from Kaneka · Not said
Ubiquinol from Kaneka (300mg a day)
In context ↗ - Nattokinase · No change
Nattokinase didn't change anything, also tried different brands.
In context ↗ - Baby Aspirin · Not said
If the docs were ok with it I'd also start with Baby Aspirin and Nattokinase way earlier than I did.
In context ↗ - Paxlovid · Helped a lot
I got the first Paxlovid dose and it kicked COVId in it's butt.
In context ↗ - meditation and neurotraining · Helped
thanks to meditation, neurotraining etc. I don't have any depressive or anxious symptoms but I'm still severe
In context ↗ - Vitamin D drops (Sunday.de) · Not said
I can only tolerate the drops from Sunday.de
In context ↗ - melatonine · Not said
Also 5-8mg of melatonine, I don't take it for sleeping, I got it prescribed due to it's positive effect on the brain
In context ↗ - TBI/stroke brain-rest strategies · Helped
I found it helpful to use TBI/stroke strategies. Like only using the brain for 10 minutes, and then take a break of 5 minutes.
In context ↗
Approaches: H1 antihistamines · Antihistamines & MCAS · Diet · 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 | After |
|---|---|---|---|
| 2020 | COVID-19 followed by long COVID with POTS and PEM; kept working and tried to return to sportGot LC in 2020 and got treated with: extensive exercise!In context ↗ | Mild | |
| early 2021 | prescribed graded exercise, got worse and worse, hospitalised with extreme POTS and MCASI ended up hospitalised for extreme pots and mcas, and then got diagnosed with CFS/ME in the hospital.In context ↗ | Severe | |
| late 2022 | MCAS flare with constant anaphylaxis, a week in hospital, nearly diedA year ago I got so bad that I nearly died and was in the hospital for a week and I was constantly going into anaphylaxis.In context ↗ | Very severe | |
| 2023 | slow gains on mast-cell protocol and diet, able to add a few foods and gain weightThe improvement steps are tiny, but they are there.In context ↗ | Severe | |
| December 2023 | COVID reinfection with very high fever and low oxygen, helped by Paxlovidgot COVID two weeks ago. My family wanted to admit me to the hospital, cause my fever was so high and oxygen saturation lowIn context ↗ | Severe | |
| February 2024 | still slowly getting somewhat better with POTS treatmentI'm the worst POTS case my hospital has ever seen and I still get better somewhat.In context ↗ | Severe | Ivabradine |
| November 2024 | stellate ganglion block helped a lot; still very disabledA SGB saved my life, I was a bit worse than her before it.In context ↗ | Severe | Stellate ganglion block |
Adverse events
- Cromolyn (Gastrocrom, Nalcrom)“I was hospitalised for a bad reaction to Cromolyn” In context ↗ Allergic reaction / anaphylaxis
- “the dietitian gave me a hypoallergenic diet drink to gain weight - I went into full blown anaphylaxis” In context ↗ Allergic reaction / anaphylaxis
- Everyday exercise and activity“got exercise prescribed, I loved sport pre covid so I just went back to it, but got worse and worse. I always got sick the next day after sport. With dizzyness, fever, weakness... until I got bedridden.” In context ↗ Made symptoms worse
- Everyday exercise and activity“I ended up hospitalised for extreme pots and mcas, and then got diagnosed with CFS/ME in the hospital.” In context ↗ Hospitalisation
- Low-dose naltrexone“I'm on 2 mg, because more gloves me migraines” In context ↗ Side effects
- Low-dose naltrexone“I take it in the morning because in the evening it affects my sleep negatively” In context ↗ Insomnia from treatment
- Ketotifen (Zaditen), Cromolyn (Gastrocrom, Nalcrom)“Just to let you know, morning doses made me insanely tired” In context ↗ Side effects
Symptoms mentioned
Brain fogFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityLoss of smell or tasteMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I always got sick the next day after sport.
In context ↗ - Brain fog
The better my neuroinflammation gets, the better my cognitive function gets. It's still bad
In context ↗ - POTS & dysautonomia
I got POTS to the point that I started to faint on a regular basis
In context ↗ - Mast cell (MCAS) & allergies
I react to everything, but worst are temperatures, foods, fragrances
In context ↗ - Sleep problems
What made the difference for my sleep was Ketotifen at night
In context ↗ - Pain & fibromyalgia
Mainly cognitively and with pain
In context ↗ - Headaches & migraine
I had fever, muscle pain, migraine, vertigo
In context ↗ - Gut problems
I didn't even know before how being bloated felt
In context ↗ - Light & noise sensitivity
Light and sound are my enemies.. I wear earplugs or headphones 24-7
In context ↗ - Heart symptoms & palpitations
whenever I tried to sit up my heart went above 180 and I passed out immediately
In context ↗ - Muscle weakness
With dizzyness, fever, weakness... until I got bedridden.
In context ↗ - Flu-like symptoms
I often woke up the next day and thought I caught a virus.
In context ↗ - Loss of smell or taste
Before I couldn't smell anything for over a year
In context ↗ - Hair loss
Alopecia is now an official post covid complication with a likelihood of 25%. LDN helped me.
In context ↗
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