Long COVID
Very severe → much betterIll 2.5 years before improving or writingNeeds ongoing treatment
Bedridden with long COVID at worst, now much better with pacing and LDN
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 2.5 years
- Last post
- Oct 2024
In their words
- Condition: Long COVID
I'm a text book case of LC with CFS/ME
In context ↗ - At worst: Very severe
At my worst, bedridden, brain unable to function to allow me to look after myself
In context ↗ - Now: Much better
I can still drive, but can't deal with complex and unfamiliar navigations, so that limits me to a few usual routes
In context ↗ - Began after: COVID
I had a mild case on LC from my first infection
In context ↗
Read from 43 of their posts and comments; links to the 25 this page draws on
Summary
A 36-year-old Australian woman developed mild long COVID after a first infection, neared normal after eight months, then was reinfected in December 2022 and became bedridden. Pacing, medical cannabis, LDN, antihistamines and Midodrine helped somewhat, and by mid-2023 she worked a few short days a week. A PEM crash in June 2023 set her back to her worst. By late 2024 she could only drive a few familiar routes.
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What they tried
What they credit
Medical cannabis (THC and CBD)· Helped a lot · mainPacing· HelpedYoga nidra meditation, restorative yoga and breath work· HelpedNatto-serra· HelpedNatto-serra· HelpedNAC· HelpedLoratadine (and cetirizine)· HelpedLoratadine (and cetirizine)· HelpedLDN (low-dose naltrexone)· Helped · mainMidodrine· HelpedUltramicronised PEA· HelpedMagnesium· Helped
Also tried
Biotin and zinc· HelpedAshwaganda, lemon balm and L-theanine· HelpedAshwaganda, lemon balm and L-theanine· HelpedAshwaganda, lemon balm and L-theanine· HelpedAcupuncture· HelpedPsychologist· HelpedBotox in masseters· HelpedSwimming / being immersed in water· HelpedFamotidine· WorseAntibiotics· WorsePristiq (desvenlafaxine)· Not saidFluoxetine· Not saidProbiotics and gut healing supplements· Not saidColloidal silver· Not saidOTC Naproxen· Not saidLow histamine diet· Not saidGiving up alcohol and cutting down coffee· Not saidGiving up alcohol and cutting down coffee· Not saidOMAD (one meal a day)· Not said48 hour fasts· Not saidCold showers· Not saidCompression garments and increasing sodium in food· Not saidCompression garments and increasing sodium in food· Not saidAir pressure leg massagers· Not saidPhysio program· Not saidLong Covid outpatient Rehabilitation Clinic· Not said
Their words about each treatment
- Medical cannabis (THC and CBD) · Helped a lot
I've been using CBD and THC to help manage symptoms. It's not for everyone, but it's been a game changer for me.
In context ↗ - Pristiq (desvenlafaxine) · Not said
I've experienced sexual dysfunction from being on a stupidly high dose of Pristiq (200mg/day) for depression for many, many years.
In context ↗ - Fluoxetine · Not said
I couldn't manage mentally without an antidepressant, so I started fluoxetine and have been on that for about 4 months now.
In context ↗ - Pacing · Helped
The ME/CFS was completely debilitating early on, but pacing has helped a lot with that.
In context ↗ - Yoga nidra meditation, restorative yoga and breath work · Helped
I'll add to this, that specifically yoga nidra guided meditation helped me a lot.
In context ↗ - Natto-serra · Helped
I know I've definitely seen improvements with Natto-serra and NAC, but I'm still figuring the rest out.
In context ↗ - Loratadine (and cetirizine) · Helped
I tried a few different ones and then loraditine was the one that seems to have helped.
In context ↗ - Famotidine · Worse
A lot of people take famotadine (H2) at night to hit both H1 and H2 histamine receptors, but famotadine gives me anxiety.
In context ↗ - LDN (low-dose naltrexone) · Helped
I saw gradual improvements in my fibromyalgia (or suspected hEDS) symptoms over many months when I first began to take LDN.
In context ↗ - Midodrine · Helped
Starting Midodrine late last year, has started helping over all, but it's definitely started helping some of the weirder symptoms I've experienced, and it seems to be starting to help with the brain fog too
In context ↗ - Ultramicronised PEA · Helped
Supplements: Magnesium Ultramicronised PEA (I don't actually know that much about this one, other than that it works a little bit like CBD) CBD Oil These help, but Cannabis and LDN (both prescription for me in Australia) do most of the heavy lifting
In context ↗ - Magnesium · Helped
Magnesium ... These help, but Cannabis and LDN (both prescription for me in Australia) do most of the heavy lifting
In context ↗ - Biotin and zinc · Helped
supplementing biotin and zinc has helped specifically with skin and hair.
In context ↗ - Ashwaganda, lemon balm and L-theanine · Helped
I've also found some herbs and supplements that work well for me for anxiety both during that time and any old time! Ashwaganda, lemon balm and L-theanine.
In context ↗ - Probiotics and gut healing supplements · Not said
Its an endless cycle of antibiotics, and then severe gut issues, and then taking all the probiotics and gut healing supplements.
In context ↗ - Antibiotics · Worse
I've had 3 UTIs in a row. ... Its an endless cycle of antibiotics, and then severe gut issues
In context ↗ - Colloidal silver · Not said
I take colloidal silver when I'm coming down with something like a cold, a virus, an infection such as a UTI.
In context ↗ - OTC Naproxen · Not said
I use OTC Naproxen if I need extra pain relief, although I try to avoid NAIDS so this is occasional for me.
In context ↗ - Low histamine diet · Not said
cut down on coffee, no alcohol, low histamine diet, various supplements and antihistamines
In context ↗ - Giving up alcohol and cutting down coffee · Not said
I've given up alcohol, aside from an occasional sip from someone else's drink, just for the taste. I still haven't managed to kick the caffeine habit, but I've managed to reduce it to one coffee per day
In context ↗ - OMAD (one meal a day) · Not said
OMAD, 48 hour fasts
In context ↗ - Acupuncture · Helped
I've been going weekly for a few weeks now, and my sleep has improved quite a bit.
In context ↗ - Cold showers · Not said
meditation, breath work, cold showers, compression garments (socks, waist garment)
In context ↗ - Compression garments and increasing sodium in food · Not said
compression garments (socks, waist garment), one of those air pressure leg massagers, acupuncture, increasing sodium in food
In context ↗ - Air pressure leg massagers · Not said
one of those air pressure leg massagers
In context ↗ - Physio program · Not said
Then I have a physio program that I practice every second day when I'm at a better baseline than I have been after a recent regression.
In context ↗ - Psychologist · Helped
I also have an excellent Psychologist who I've been seeing for many years for severe depression and anxiety.
In context ↗ - Long Covid outpatient Rehabilitation Clinic · Not said
I've started attending the local Long Covid outpatient Rehabilitation Clinic at my local hospital
In context ↗ - Botox in masseters · Helped
I used to get Botox every 3-4 months because I got TMJ related migraines.
In context ↗ - Swimming / being immersed in water · Helped
My POTS symptoms, specifically tachycardia, almost completely disappear when I'm in a pool. I can even do a few gentle laps.
In context ↗
Approaches: H1 antihistamines · POTS medication · Anticoagulants · Mind-body practices · Other drugs and medicines · Pacing · 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. 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 | After |
|---|---|---|---|
| onset | first COVID infection, mild long COVIDI had a mild case on LC from my first infectionIn context ↗ | Mild | |
| about 8 months in | well on the way back to normal with rest outside workI just went 4 days a week at work and focussed on resting as much as possible outside of work hours, and I gradually saw improvementsIn context ↗ | Mild | Pacing and the energy envelope |
| February 2023 | bedridden and unable to look after herself after the December 2022 reinfectionAt my worst, bedridden, brain unable to function to allow me to look after myselfIn context ↗ | Very severe | |
| May 2023 | about 20% better, back to a few short work days a weekafter 4 months of being totally incapacitated, I've improved by about 20%. I can now work a few short 3.75 hours day per weekIn context ↗ | Severe | |
| June 2023 | big PEM crash, back to her worst February levelI recently had a big PEM crash, and regressed to roughly the same level of ability as I had at my very worst in FebruaryIn context ↗ | Very severe | |
| 2024-02-18 | Midodrine started helping overall, including brain fogStarting Midodrine late last year, has started helping over allIn context ↗ | Not stated | Midodrine |
| 2024-10-21 | can drive only a few familiar short routesI can still drive, but can't deal with complex and unfamiliar navigations, so that limits me to a few usual routes, to the chemist, GP, post office and psychologyIn context ↗ | Moderate |
Adverse events
- Desvenlafaxine (Pristiq)“I've experienced sexual dysfunction from being on a stupidly high dose of Pristiq (200mg/day) for depression for many, many years” In context ↗ Side effects
- Desvenlafaxine (Pristiq)“I found that Sandoz generic brand made me completely unable to feel any sexual pleasure at all” In context ↗ Side effects
- Desvenlafaxine (Pristiq), Fluoxetine (Prozac)“Brain Zaps are very real, and genuinely so painful and debilitating. I had to wean off more quickly than anyone would have recommend ... I suffered a lot as a consequence.” In context ↗ Withdrawal problems
- Antibiotics (unspecified)“Its an endless cycle of antibiotics, and then severe gut issues, and then taking all the probiotics and gut healing supplements” In context ↗ Gut side effects
- Famotidine (Pepcid)“famotadine gives me anxiety” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
My main issues were ME/CFS, PEM and brain fog
In context ↗ - Brain fog
brain fog that has rendered me about as useful to my workplace as a toddler
In context ↗ - POTS & dysautonomia
I already have a POTS diagnosis
In context ↗ - Mast cell (MCAS) & allergies
if you suffer from Mast cell activation syndrome or Histamine Intolerance like me
In context ↗ - Sleep problems
I use it for what it was actually prescribed for, anxiety, insomnia and depression
In context ↗ - Pain & fibromyalgia
I saw gradual improvements in my fibromyalgia (or suspected hEDS) symptoms over many months
In context ↗ - Headaches & migraine
I did lose the confidence to drive at night at one stage, due to some migraine symptoms
In context ↗ - Gut problems
I have gut dysbiosis and suspect I have SIBO
In context ↗ - Light & noise sensitivity
sensitivity to sound and light
In context ↗ - Breathlessness
muscle aches and pains and weakness, joint pain, SOB
In context ↗ - Heart symptoms & palpitations
My POTS symptoms, specifically tachycardia, almost completely disappear when I'm in a pool
In context ↗ - Muscle weakness
muscle aches and pains and weakness
In context ↗ - Anxiety & low mood
I already have pretty severe depression and anxiety prior to Covid
In context ↗ - Vision problems
eye floaters and peripheral shadows
In context ↗ - Hair loss
I have been losing clumps of hair
In context ↗
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