Long COVID
Severe → much betterIll 1 year before improving or writingNeeds ongoing treatment
Long COVID with paralysis and daily vomiting, much better after pacing and EECP
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 1 year
- Last post
- Jul 2024
In their words
- Condition: Long COVID
I’m 20 months longhauler
In context ↗ - At worst: Severe
I went from bedridden and paralyzed to cycling starting at 3 minutes up to now 40 or more on the recumbent bike
In context ↗ - Now: Much better
I’m 4 years out and so much better ... I am not recovered but I am improved a lot. Still disabled
- Began after: COVID
I got Covid in March 20 20 bad cough but I was fine but then in June 2020 it hit me again
Read from 184 of their posts and comments; links to the 57 this page draws on
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Summary
Miranda Erlanson, a Texas teacher, developed long COVID after COVID-19 in March 2020; within months she was paralyzed, vomiting daily and using a wheelchair. A Leronlimab trial during her first 17 months brought rapid, major improvement for about two months, but the treatment did not continue. Later pacing and EECP helped; by early 2022 she was working remotely and exercising but still had MCAS, pain and flares.
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What they tried
What they credit
Leronlimab· Helped a lot · main · wore offXolair· Helped a lotStellate ganglion block· Helped a lot · main · wore offValtrex· HelpedIvermectin· Helped · wore offRecumbent bike / POTS heart reset program· HelpedAnti-inflammatory / low-histamine diet· HelpedATP360· HelpedKetotifen· HelpedSingulair (montelukast)· HelpedPepcid AC (famotidine)· Helped
Also tried
EECP blood flow therapy· Helped a lotPacing· HelpedCarnivore diet· HelpedBCAAs and amino acids· HelpedCollagen peptide powder· HelpedQuercetin· HelpedCorlanor (ivabradine)· HelpedMetoprolol· HelpedSynthetic opiate· HelpedProzac (fluoxetine)· HelpedNerve blocks and radiofrequency ablation· HelpedPaxlovid· HelpedKenalog steroid shot· HelpedToradol (ketorolac)· HelpedIV fluids· HelpedSpeech therapy· HelpedPTSD therapy· HelpedSun exposure· HelpedCromolyn sodium· No changeModafinil· No changeAspirin· WorseDuloxetine (Cymbalta)· WorseFluvoxamine· WorseFenofibrate· Not saidGabapentin· Not saidIntermittent fasting· Not saidMestinon· Not saidColchicine· Not saidMolnupiravir· Not saidIndomethacin· Not saidGaviscon advance· Not saidCryotherapy· Not saidTPN· Not saidLuteolin· Not saidGlutathione· Not saidVitamin D· Not saidAshwagandha· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- Leronlimab · Helped a lot
Wheelchair bound (POTS), alone,in an rv in another state, it fixed me in 3 days!!
In context ↗ - Valtrex · Helped
It reduces my vomiting a lot also I have horrible sore throat’s and they only go away when I’m good on my antivirals.
In context ↗ - Ivermectin · Helped
I had a fantastic one time response to it it stopped all of the vomiting that I have
In context ↗ - Fenofibrate · Not said
FLCCC MEDS fenofibrate Valtrex and 700mg Leronlimab weekly for 8 weeks
In context ↗ - Aspirin · Worse
I took aspirin and got a gi bleed early on after concluding a 6 wk gi bleed
In context ↗ - Gabapentin · Not said
I also had to do the first whole year on gabapentin for pain
In context ↗ - Pacing · Helped
I did and I followed the pacing guidelines from MECFS
In context ↗ - Recumbent bike / POTS heart reset program · Helped
I got a recumbent bike at eight or nine months at the recommendation of an electrophysiologist and I did that for 12 months.
In context ↗ - Anti-inflammatory / low-histamine diet · Helped
A full anti-inflammatory diet overhaul for 18 months. My symptoms were the best day ever worked in that time.
In context ↗ - Carnivore diet · Helped
I switched from mcas diet to carnivore mostly chicken occasionally a nice steak ... less headaches after eating meat
In context ↗ - Intermittent fasting · Not said
Also intermittent fasting and watching my diet carefully.
In context ↗ - BCAAs and amino acids · Helped
The L lysine and L Sistine and then Beta chain amino acids seem to be the best thing to help my brain.
In context ↗ - ATP360 · Helped
ATP360 has really helped a lot
In context ↗ - Collagen peptide powder · Helped
I used multiple collagen peptide powder and quercetin in my protein smoothies every day three times a day for about six months and then I recovered completely from blurry vision.
In context ↗ - Mestinon · Not said
I am trialing something for pots called Mes - tin - on
In context ↗ - Corlanor (ivabradine) · Helped
They gave me some thing called angiotensin beta blocker it works really well for that condition ... now my dose is 7.5 mg of Corlanor
In context ↗ - Metoprolol · Helped
The beta blockers also helped my heart rhythm which spikes if I eat food
In context ↗ - Xolair · Helped a lot
In starting the Xolair for allergies it turned out that also stopped me from vomiting and it reduced how much I feel like I’m burning alive each day.
In context ↗ - Ketotifen · Helped
then I took Ken and I saw immediate differences within 20 minutes. I can take one eat a meal 15 minutes later and not get sick.
In context ↗ - Cromolyn sodium · No change
I used to drink 50 cromolyn sodium vials a day and still see no difference
In context ↗ - Singulair (montelukast) · Helped
we threw in all 4 anti-products. So anti-leukotreine (singulair), famotidine, anti-histamine, plus Ketotifen and Cromolyn
In context ↗ - Pepcid AC (famotidine) · Helped
I highly recommend you take Pepcid AC if your doctor says it’s OK just because it helped me a lot with inflammation not just reflux
In context ↗ - Synthetic opiate · Helped
The first 18 months of long COVID I had severe spinal and nerve pain and was prescribed a non addictive opiate synthetic by my pain doc.
In context ↗ - Duloxetine (Cymbalta) · Worse
my pain was so severe that the duloxetine barely touched it, and a gained weight
In context ↗ - Fluvoxamine · Worse
when I tried it I had a heart problem because I started way too high
In context ↗ - Prozac (fluoxetine) · Helped
Sometimes though I take my bf Prozac and it’s very nice.
In context ↗ - Modafinil · No change
I was so sick I barely notice it helping but I got off of it pretty quickly.
In context ↗ - Colchicine · Not said
I’ll get back on my Cholchicine tomorrow.
In context ↗ - EECP blood flow therapy · Helped a lot
I went to three months of EECP therapy ... This was the biggest change for me
In context ↗ - Stellate ganglion block · Helped a lot
did SGB, again major improvement to point of no symptoms then wore off ~8 months
In context ↗ - Nerve blocks and radiofrequency ablation · Helped
two ganglion root Nerve blocks and then cervical root nerve blocks and then two neurosurgeries CRFA cervical radio frequency ablations
In context ↗ - Paxlovid · Helped
I was given the paxlovid for this reinfection and I only had one day where I was on the bed like a zombie.
In context ↗ - Molnupiravir · Not said
Like, I am on valtrex and randomly, mulnupiravir, but that was just for a few day due to reinfection
In context ↗ - Kenalog steroid shot · Helped
kenalog steroid shot, IV torodol (anti-inflammatory abdominal pain med), and Benadryl (MCAS)
In context ↗ - Toradol (ketorolac) · Helped
IV torodol (anti-inflammatory abdominal pain med)
In context ↗ - Indomethacin · Not said
order my MA to refill Indomethacin and refill my ketamine
In context ↗ - IV fluids · Helped
having a doctor send you just like IV fluids ... it cooled down the inflammation of my chest
In context ↗ - Gaviscon advance · Not said
I highly recommend that you try galviscon advance from the UK
In context ↗ - Speech therapy · Helped
I saw a speech therapist and somehow, though the work I did with them fixed the speech problem
In context ↗ - PTSD therapy · Helped
I went through PTSD therapy and that helped me except myself and my body
In context ↗ - Sun exposure · Helped
Sunlight for sure helps!
In context ↗ - Cryotherapy · Not said
Done EECP blood flow therapy cryotherapy graded exercise, etc.
In context ↗ - TPN · Not said
I also had a short period of TPN
In context ↗ - Luteolin · Not said
Take quercetin luteolin multivitamin Vit D cystein L-lysine glutathione and ashwaghanda.
In context ↗ - COVID vaccination as treatment · Not said
My heart stopped for 1 second, every few seconds for hours, as a POTS episode.
In context ↗
Approaches: H2 blockers · Antihistamines & MCAS · Antivirals · Diet · Biologics & antibodies · Other drugs and medicines · Physiotherapy and rehab · 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 |
|---|---|---|---|
| March 8, 2020 | COVID-19, diagnosed as upper respiratory bronchitiswent to ER dx w upper respiratory bronchitis March 8, 2020. Back to my classroom next day.In context ↗ | Mild | |
| June 2020 | paralysis, vomiting, wheelchair, bedbound2.5 months later was paralyzed, vomiting 20x dayIn context ↗ | Severe | |
| March 2021 | clinical trial Leronlimab, out of wheelchairAfter 4 week on the treatment, no longer needed wheelchair.In context ↗ | Mild | |
| mid 2021 | stopped Leronlimab, immune dysfunction returnedMaybe 2 months after I came off of the drug, my immune system returned to its previous dysfunctional state.In context ↗ | Severe | |
| March 2022 | remote work, cycling and hiking after pacing/EECPI went from bedridden and paralyzed to cycling starting at 3 minutes up to now 40 or more on the recumbent bike, and hiking 3 to 5 milesIn context ↗ | Mild | |
| June to September 2022 | reinfection and mild heart attackI was 90% when reinfected. New journey now.In context ↗ | Moderate | |
| 2023 | stellate ganglion block, symptom-freeOnce a few weeks after SGB, I had a whole ass life again!In context ↗ | Near normal | Stellate ganglion block |
| late 2023 | SGB wore off and symptoms returnedCame back worse 2 months ago.In context ↗ | Moderate | |
| June 2024 | working and exercising but still disabledI am not recovered but I am improved a lot. Still disabled but with a life that is mostly worth living. I exercise, I work, I sleep.In context ↗ | Mild | Stellate ganglion block |
Adverse events
- Aspirin“I reacted to aspirin two weeks ago by having gi bleed haha so yes so true” In context ↗ Gut side effects
- COVID vaccination as treatment“My heart stopped for 1 second, every few seconds for hours, as a POTS episode.” In context ↗ Heart rhythm problems
- COVID vaccination as treatment“It definitely caused my current inflammation and pains to be extremely exacerbated for about four or five months of a flare.” In context ↗ Autoimmune or inflammatory flare
- Fluvoxamine (Luvox)“Gave me heart probs immediately but maybe I should have started at a lower dose.” In context ↗ Heart rhythm problems
- Duloxetine (Cymbalta)“my pain was so severe that the duloxetine barely touched it, and a gained weight” In context ↗ Side effects
- Ketotifen (Zaditen)“3 days dry lips almost so chapped, then I adjusted.” In context ↗ Side effects
- Aspirin“I did baby aspirin the month 2-7 but then had to stop sensitive tummy” In context ↗ Gut side effects
- “can cause temporary reactive or post malaise the first few days” In context ↗ Made symptoms worse
- Stellate ganglion block“got a stellate ganglion block which provoked PEM. All of a sudden I had worst sore throat ever.” In context ↗ Made symptoms worse
- Sofosbuvir or maraviroc (unspecified)“although it burns a little when injected” In context ↗ Side effects
- Sofosbuvir or maraviroc (unspecified)“24 hours later, I had a little tiny bit of swelling in my lip that went away on its own within an hour.” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
the PEM was the worst
In context ↗ - Brain fog
speaking a second language through the brain fog
In context ↗ - POTS & dysautonomia
I’m on Ivabradine as well for pots and gastrointestinal dysautonomia.
In context ↗ - Mast cell (MCAS) & allergies
I still have severe MCAS so vomiting and diarrhea itching
In context ↗ - Sleep problems
the 15 hour night sleeps stopped too
In context ↗ - Pain & fibromyalgia
The pain is still really horrible and unbearable
In context ↗ - Headaches & migraine
my headaches went completely away
In context ↗ - Light & noise sensitivity
sunlight aversion was gone
In context ↗ - Breathlessness
I felt shortness of breath but was dismissed
In context ↗ - Heart symptoms & palpitations
knew I had A Fib
In context ↗ - Muscle weakness
I was paralyzed in the feet and hand
In context ↗ - Anxiety & low mood
I wanted to die so many times
In context ↗ - Flu-like symptoms
All my sore throats have come back recently
In context ↗ - Temperature regulation
my brain cerebral intracranial pressure and brain fevers are really bad this week
In context ↗ - Vision problems
I recovered completely from blurry vision
In context ↗
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