Long COVID
Severe → somewhat betterIll 10 months before improving or writingNeeds ongoing treatment
Long COVID with neuropathy and vision loss, somewhat better with acupuncture and diet
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 months
- Last post
- Dec 2022
In their words
- Condition: Long COVID
I started my long haul journey February 13th.
In context ↗ - At worst: Severe
I’m on the couch or bed most of the time.
In context ↗ - Now: Somewhat better
I’ve gotten used to my vision and hearing. I just need the pots and fatigue to properly fuck off.
In context ↗ - Began after: COVID
Mild infection early January. Full recovery, started life again normally. February 14 started my long haul.
Read from 164 of their posts and comments; links to the 58 this page draws on
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Summary
A 30-year-old woman developed long COVID in February 2022 after a mild January infection, with left-sided neuropathy followed by partial vision loss. A June 2022 reinfection caused a relapse with new symptoms. Acupuncture and diet changes brought slow gains; by fall her vision and sleep had improved, but a scotoma recurrence and POTS, fatigue and PEM persisted.
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What they tried
What they credit
Acupuncture (traditional Chinese acupuncture with cupping and gua sha)· Helped a lot · mainAcupuncture (traditional Chinese acupuncture with cupping and gua sha)· Helped a lot · mainAcupuncture (traditional Chinese acupuncture with cupping and gua sha)· Helped a lot · mainCupping· HelpedGluten free, dairy free and sugar free diet· HelpedGluten free, dairy free and sugar free diet· HelpedGluten free, dairy free and sugar free diet· HelpedVitamin D· HelpedVitamin B· HelpedIbuprofen· HelpedLimiting screen time· HelpedCastor oil in the eyes· HelpedHeated eye mask· HelpedRestasis eye drops· HelpedLMNT electrolytes· HelpedCOVID booster· HelpedRadical rest· Helped
Also tried
Therapy· HelpedHot baths· HelpedMeditation· HelpedCBD and CBN· HelpedToradol shot· HelpedFunctional doctor supplement regimen· HelpedLiposomal / trizomal glutathione· HelpedBacopa complex (Medi Herb)· HelpedOculatrophin· HelpedPreservative-free eye drops (Systane)· HelpedPaxlovid· Helped · wore offPrisms· HelpedCompression socks· HelpedAloe vera juice· HelpedRicola dual action glacier mint cough drops· HelpedZyrtec· HelpedFluticasone nasal spray· HelpedMucinex· HelpedMelatonin· HelpedMagnesium citrate (Calm Sleep)· HelpedL-theanine· HelpedYoga and stretching· HelpedAtivan· HelpedLidocaine patches and Icy Hot· HelpedCBD/THC topicals· HelpedPacing· HelpedSmoked weed· WorsePrednisone / oral steroids· WorseKetogenic diet· WorseNatto sera (nattokinase)· WorseNatto sera (nattokinase)· WorseChiropractic· WorseCod liver oil· Not saidRepairvite· Not saidWheat germ oil· Not saidDoxycycline· Not saidGabapentin· Not saidStimulants (unspecified)· Not said
Their words about each treatment
- Therapy · Helped
A therapist has helped me to trust myself and know that this is not psychosomatic.
In context ↗ - Hot baths · Helped
Things that helped neuropathy included hot baths and meditation.
In context ↗ - CBD and CBN · Helped
staying calm, cbd/cbn and keeping myself comfortably distracted.
In context ↗ - Toradol shot · Helped
My doctor gave me a Toradol shot and I feel like that’s when it got noticeably better and halted completely.
In context ↗ - Smoked weed · Worse
since I’ve gotten CFS I haven’t been able to because it makes all my nuero symptoms worse
In context ↗ - Acupuncture (traditional Chinese acupuncture with cupping and gua sha) · Helped a lot
Tbh acupuncture and cupping has done more for me than any other treatment.
In context ↗ - Cupping · Helped
Cupping is what I think helped the most!
In context ↗ - Functional doctor supplement regimen · Helped
I’m also on a nuero inflammatory regimen from a functional doc, to early to say but it’s helping a bit in the first week that I’m doing it.
In context ↗ - Gluten free, dairy free and sugar free diet · Helped
My functional doctor had me try gluten free, dairy free and no sugar (except natural sugars) and I’ve had some success with it.
In context ↗ - Liposomal / trizomal glutathione · Helped
It’s helped my energy levels lots tbh.
In context ↗ - Bacopa complex (Medi Herb) · Helped
bacopa complex has been helping with my brain fog
In context ↗ - Vitamin D · Helped
Meds that I honestly think helped: oculatrophin, an antihistamine, vitamin b, vitamin d, glutathione and ibuprofen for eye strain.
In context ↗ - Cod liver oil · Not said
I’m taking bacopa complex, glutathione, cod liver oil, ultra vitamin d, repairvite, Zyrtec and wheat germ oil.
In context ↗ - Limiting screen time · Helped
I stayed off of screens completely for 2 weeks. I was only allowed to be on my phone for 10 mins during those 2 weeks. That helped.
In context ↗ - Preservative-free eye drops (Systane) · Helped
Lots of good quality eye drops like systane, with no preservatives. ... I put those in like 8x a day.
In context ↗ - Castor oil in the eyes · Helped
I put castor oil in my eyes and it’s been helping improve my vision.
In context ↗ - Heated eye mask · Helped
I honestly feel like what mainly helped was castor oil and the heated eye mask.
In context ↗ - Prednisone / oral steroids · Worse
It really messed up my stomach. Made everything worse.
In context ↗ - Paxlovid · Helped
I took Paxlovid, felt better after the first 3 doses.
In context ↗ - Restasis eye drops · Helped
wow restasis helped a LOT
In context ↗ - Prisms · Helped
The Opthamologist thinks I have convergence insufficiency and suggested prisms, that did help me.
In context ↗ - Doxycycline · Not said
Doxycycline but only because I’m super allergic to amoxicillin.
In context ↗ - Ketogenic diet · Worse
I can’t do Keto at all. Makes me feel very very sick and extremely fatigued.
In context ↗ - Compression socks · Helped
Compression socks really helped me.
In context ↗ - LMNT electrolytes · Helped
The LMNT packets seem to really help me more than other stuff.
In context ↗ - Aloe vera juice · Helped
Meeeee, it helped me poop again
In context ↗ - Ricola dual action glacier mint cough drops · Helped
the ricola dual action glacier mint really help me a lot
In context ↗ - Zyrtec · Helped
I did 1 zyrtec and 2 doses of nasal spray (fluticosnine) a day. It helped but I started it too late.
In context ↗ - Fluticasone nasal spray · Helped
2 doses of nasal spray (fluticosnine) a day. It helped but I started it too late.
In context ↗ - Mucinex · Helped
It’s my first day of the mucinex + Flonase! It seems to have taken off the pressure a bit.
In context ↗ - Melatonin · Helped
doing all of this really helps. It took a few days to kick in
In context ↗ - Magnesium citrate (Calm Sleep) · Helped
And melatonin, magnesium citrate, l-thiamine, and a CBD/CBN combo.
In context ↗ - Yoga and stretching · Helped
My whoooole day is planned around going to sleep now. Infared time in the sun. No caffeine at all. Yoga/stretching.
In context ↗ - Ativan · Helped
Ativan has helped with the monthly adrenaline dump.
In context ↗ - Gabapentin · Not said
I got a prescription for gabepentin when it’s really bad.
In context ↗ - Lidocaine patches and Icy Hot · Helped
Lots of heat, lidocaine, icy hot and THC/Cbd topical have all been life savers.
In context ↗ - CBD/THC topicals · Helped
Literal life savers with nueropathy. I’ve had a great success with Carters aromatherapy designs and their pain cream.
In context ↗ - COVID booster · Helped
Noticed improvement in my energy levels and I feel like I’m on an upward climb right now.
In context ↗ - Pacing · Helped
I really have to pace myself. Do half of what I think I can do.
In context ↗ - Radical rest · Helped
I’m also taking radical rest pretty seriously and have really good support from my doctor.
In context ↗ - Natto sera (nattokinase) · Worse
It really really flared my symptoms for the 2 days I was on it.
In context ↗ - Stimulants (unspecified) · Not said
My meds do the opposite now. I over react to my meds.
In context ↗ - Chiropractic · Worse
Woke up that night in excruciating pain, went to the ER and the ‘adjustment’ inflamed my neck that already had issues from a car accident.
In context ↗
Approaches: POTS medication · Alternative therapies · Diet · Other drugs and medicines · Pacing · Radical rest · Supplements · Vaccination
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 |
|---|---|---|---|
| 2022-02-13 | long haul begins with left-sided neuropathy, ER tripI started my long haul journey February 13th. I remember because that night my nueropathy started and spread across my entire left side.In context ↗ | Moderate | |
| March 2022 | neuropathy stopped and vision suddenly wentIn March, my nueropathy completely stopped just as quickly as it came. The next day my vision went. Very suddenly.In context ↗ | Moderate | |
| 2022-05-07 | first sense that things were getting betterFor the first time since March, I can say, I think I’m getting better? Knock on wood.In context ↗ | Moderate | |
| 2022-06-05 | vision and fatigue improving, could walk around all dayStarting to finally see improvements at the 5.5 month mark. My vision is finally starting to come back :)In context ↗ | Mild | |
| 2022-06-24 | COVID reinfection put her back on the couch, anxious and isolatedI have a shell of my past life and honestly I’m on the couch or bed most of the time.In context ↗ | Severe | |
| 2022-08-02 | recovered back to pre-reinfection level after two bad monthsIt was bad for me for 2 months and I’ve gotten drastically better this past week. ... I’m finally back to my pre-reinfection stage.In context ↗ | Mild | |
| 2022-09-17 | said she had been at 90% before a reinfectionI was at 90% and got reinfectedIn context ↗ | Near normal | |
| 2022-10-10 | booster brought a burst of energy and no achesI woke up from a nap to feel not a single ache in my body, had an absurd amount of energy (the most I’ve had in the 10 months I’ve been longhauling)In context ↗ | Near normal | COVID vaccination as treatment |
| 2022-10-19 | PEM, full body aches, hair loss and neck pain flareI would honestly say that I don’t feel “better” overall. The PEM is pretty brutal.In context ↗ | Moderate | |
| 2022-12-21 | vision improving again after a year, but POTS and fatigue remainMy vision has finally started to get better after a year! My left eye went from blurry back to my old prescription pre Covid.In context ↗ | Mild |
Adverse events
- Corticosteroid pulses“It really messed up my stomach. Made everything worse. Increased all of my inflammation, made my vision worse, made my anxiety worse and made my insomnia worse.” In context ↗ Made symptoms worse
- Corticosteroid pulses“Meeee, it made all the vision stuff worse for me so I got yanked off of it.” In context ↗ Made symptoms worse
- Paxlovid / nirmatrelvir“Prednisone would be brutal with it tbh. They both caused sever GI upset for me.” In context ↗ Gut side effects
- Paxlovid / nirmatrelvir“Your mouth tastes like metal butt the whole time you’re taking it.” In context ↗ Side effects
- Keto and low-carb diets“I can’t do Keto at all. Makes me feel very very sick and extremely fatigued.” In context ↗ Made symptoms worse
- Stimulants (unspecified)“My meds do the opposite now. I over react to my meds.” In context ↗ Side effects
- Acupuncture“It got worse before it got better for me.” In context ↗ Made symptoms worse
- Nattokinase“It really really flared my symptoms for the 2 days I was on it.” In context ↗ Made symptoms worse
- Chiropractic“Woke up that night in excruciating pain, went to the ER and the ‘adjustment’ inflamed my neck that already had issues from a car accident.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“My heart rate was more sensitive for 48 hours. My skin and tummy are more sensitive.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitusVision problems
Their words about their symptoms
- Neuropathy & tingling
The numbness and tingling has gotten a LOT better for me, still have the burning.
In context ↗ - Vision problems
My right eye is still blurry even with glasses.
In context ↗ - Light & noise sensitivity
The floaters, stationary orbs, photophobia, dimmed vision all cleared up for me.
In context ↗ - Sleep problems
Insomnia was the scariest and that’s 100% gone.
In context ↗ - Anxiety & low mood
I still get adrenaline dumps and depression but not every day anymore.
In context ↗ - Headaches & migraine
Got diagnosed with migraine w/ aura
In context ↗ - Heart symptoms & palpitations
Some have gotten better but I still have bad days (tachycardia).
In context ↗ - POTS & dysautonomia
I just need the pots and fatigue to properly fuck off.
In context ↗ - Post-exertional malaise
The PEM is pretty brutal.
In context ↗ - Brain fog
bacopa complex has been helping with my brain fog
In context ↗ - Pain & fibromyalgia
My newest symptom, which is always the one that ends up being the worst is neck pain.
In context ↗ - Flu-like symptoms
And in my crashes, my throat gets messed up.
In context ↗ - Tinnitus
I only occasionally hear tinnitus.
In context ↗ - Breathlessness
It’s been helping with my breathing issues too
In context ↗ - Mast cell (MCAS) & allergies
I was having allergic reactions to almonds and it went away after a few months.
In context ↗ - Hair loss
I’ve been losing my hair
In context ↗
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