Long COVID
Moderate → relapsedIll 11 months before improving or writingNeeds ongoing treatment
Long COVID with severe fatigue and brain fog, improved on Zyrtec and Pepcid then relapsed
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 11 months
- Last post
- Dec 2021
In their words
- Condition: Long COVID
I have had long haul symptoms since then.
In context ↗ - At worst: Moderate
If I had to go to a job, I would not have been able to for at least 3-4 months.
In context ↗ - Now: Relapsed
A few weeks later I got bronchitis and now I feel back to square one. I had been feeling mainly back to normal except for my tinnitus.
In context ↗ - Began after: COVID
I am pretty sure that I caught covid in February of this year.
In context ↗
Read from 123 of their posts and comments; links to the 49 this page draws on
- Dec 2020
- Oct 2021
- Dec 2021
- Dec 2020
- May 2021
- Jan 2021
- Dec 2020
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Summary
Gull 52188, a 50-year-old woman in Chicago, believes she caught COVID-19 in early 2020 and long-hauled for over a year with severe fatigue, brain fog, aches, thyroiditis and later histamine problems. Twice-daily Zyrtec and Pepcid plus a low-histamine, gluten-free diet cleared her brain fog, fatigue and achiness by mid-2021, leaving hives and eczema. A cold-weather flare and bronchitis in late 2021 left her back to square one.
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What they tried
What they credit
Famotidine (Pepcid)· Helped a lot · mainPrescription vitamin D· HelpedMagnesium and electrolytes· HelpedMagnesium and electrolytes· HelpedGluten free and unprocessed diet· HelpedPacing· HelpedPrescription B12 (methylated)· HelpedLow histamine diet· HelpedSam-e· HelpedVery slow return to exercise· HelpedMethylfolate· Helped
Also tried
Zyrtec· Helped a lotSteroid cream· Helped · wore offAntibiotics· HelpedInfrared heating pad· HelpedCera-ve SA and Lubriderm· Helped10 hours of sleep a night· HelpedSound machine· HelpedIndica/Sativa capsule· HelpedNatrulo eczema soap· HelpedIntegrative health doctor· HelpedProbiota HistaminX· HelpedNuvana's Shut Eye· HelpedHemp oil with CBD and THC· HelpedBeef liver capsules· HelpedClaritin· No changeAleve· No changeAntidepressant· No changeMelatonin· WorseLipitor· WorseSynthetic B12 / folic acid· WorseSynthetic B12 / folic acid· WorsePropofol· Much worseJuice Plus· Not saidCalcium· Not saidZinc· Not saidPrebiotic· Not saidMicro algae oil (Iwi)· Not said
Their words about each treatment
- Prescription vitamin D · Helped
I have been taking a prescription vitamin D since February and it is now up to 22.
In context ↗ - Steroid cream · Helped
my eczema on my back, belly and chest is no longer responding to the steroid cream
In context ↗ - Antibiotics · Helped
I had a round of antibiotics and the swelling went down after a while.
In context ↗ - Infrared heating pad · Helped
Another thing that has helped my pain is an infrared heating pad.
In context ↗ - Magnesium and electrolytes · Helped
Magnesium and electrolytes has really helped me.
In context ↗ - Melatonin · Worse
The melatonin i am taking gives me vivid dreams.
In context ↗ - Cera-ve SA and Lubriderm · Helped
use Cera-ve SA all over my body at night and the Lubriderm with the red label every morning
In context ↗ - Gluten free and unprocessed diet · Helped
I also eliminated gluten to see if it was causing absorption issues. The aches have improved the most.
In context ↗ - Pacing · Helped
I have my best days when I pace myself, eat clean with no gluten or caffeine, schedule many breaks throughout the day and minimize stress.
In context ↗ - 10 hours of sleep a night · Helped
My best days come after a good 10 hours of sleep
In context ↗ - Claritin · No change
I took claritin on that diagnosis with no relief.
In context ↗ - Sound machine · Helped
I use a sound machine at night and it really helps.
In context ↗ - Indica/Sativa capsule · Helped
It helps me sleep and also helps with my body aches.
In context ↗ - Aleve · No change
I tried soaking in the tub and I took some Aleve but no relief.
In context ↗ - Prescription B12 (methylated) · Helped
My nerve pain improved once I got on prescription b12.
In context ↗ - Juice Plus · Not said
I am also taking Juice Plus supplements because of my lack of appetite
In context ↗ - Calcium · Not said
calcium to help the vit d absorption , zinc and a prebiotic
In context ↗ - Propofol · Much worse
Anesthesiologist said my heart rate went crazy and my entire body turned tomato red.
In context ↗ - Zyrtec · Helped a lot
I started taking Zytrec and famotidine twice a day this week to lower my histamine and it has helped too.
In context ↗ - Low histamine diet · Helped
It eat anti-inflammatory, low histamine and gluten free and it has been the best thing that has worked for most of my symptoms other than antihistamines.
In context ↗ - Sam-e · Helped
Sam-e has helped me.
In context ↗ - Lipitor · Worse
Statins really contributed to my muscle aches and fatigue in a bad way.
In context ↗ - Antidepressant · No change
It didn't do it for me.
In context ↗ - Very slow return to exercise · Helped
Sleep, antihistamines, no coffee, diet and very slow return to exercise. I am finally walking over a mile per day
In context ↗ - Natrulo eczema soap · Helped
I am using an eczema soap from Natrulo that seems to help along with the steroid cream.
In context ↗ - Integrative health doctor · Helped
I went to an integrative health dr. I found out I am not absorbing a lot of my vitamins
In context ↗ - Probiota HistaminX · Helped
I take a histamine blocking probiotic that helps with the histamine with foods.
In context ↗ - Nuvana's Shut Eye · Helped
I take Nuvana's Shut Eye. It has Valerian Root, Melatonin, Chamomile, and Magnesium in one supplement.
In context ↗ - Hemp oil with CBD and THC · Helped
What has been helping me with my pain is an organic hemp oil that has cbd and a tiny bit of thc.
In context ↗ - Beef liver capsules · Helped
I am actually taking dessicated grass fed beef liver capsules and noticed a big difference in my fatigue.
In context ↗ - Synthetic B12 / folic acid · Worse
I cannot take synthetic B12 because of a MTFHR mutation. It gives me crazy anxiety.
In context ↗ - Methylfolate · Helped
It has really helped me. Start with a low dose and work up. It gave me headaches at first.
In context ↗ - Micro algae oil (Iwi) · Not said
started taking a micro algae by a company called Iwi in place of fish or krill oil
In context ↗
Approaches: H2 blockers · POTS medication · Diet · Exercise and activity · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| February 2020 | COVID-19 followed by long-haul symptoms: respiratory issues, brain fog, fatigue, thyroid swelling, cough, eczemaI am pretty sure that I caught covid in February of this year.In context ↗ | Moderate | |
| December 2020 | Debilitated, back in bed after any push, new leg pain, thyroiditis and shingles flareI feel so debilitated and I think the dr and everyone else thinks I am crazy.In context ↗ | Moderate | |
| January 2021 | Slow improvement in fatigue and body aches on prescription vitamin D and B12She gave me prescriptions and I have been very slowly improving in my fatigue and body aches.In context ↗ | Moderate | Vitamin D and sun exposure |
| March 2021 | Walking over a mile a day for two weeks without a relapse on antihistamines, diet, sleep and paced exerciseI am finally walking over a mile per day and I feel like I am making progress.In context ↗ | Mild | |
| June 2021 | Brain fog, fatigue and achiness gone; only hives, eczema and other histamine symptoms leftAfter I started taking Pepcid and Zyrtec twice per day my brain fog and overall soreness and fatigue is gone unless I really so too much.In context ↗ | Near normal | |
| August 2021 | Gut issues and bloating started, skin worse, unable to exercise because heat and sweat trigger eczemaI have and was feeling better but now the gut issues have started.In context ↗ | Mild | |
| December 2021 | Cold-weather flare of achy joints, then bronchitis; back to square oneA few weeks later I got bronchitis and now I feel back to square one.In context ↗ | Moderate |
Adverse events
- Melatonin“I tried them as a last resort because melatonin gives me sleep paralysis and nightmares.” In context ↗ Side effects
- “If I feel the cannabis while awake, it exacerbates my anxiety/racing heart.” In context ↗ Mood or psychiatric effects
- “I ended up having an allergic reaction to the propofol which is very strange as I have had it before with no issues.” In context ↗ Allergic reaction / anaphylaxis
- Vitamin B12“I have had to try different b12's because of side effects.” In context ↗ Side effects
- Vitamin B12“I cannot take synthetic B12 because of a MTFHR mutation. It gives me crazy anxiety.” In context ↗ Mood or psychiatric effects
- Folate / folic acid supplements“The synthetic folic acid vitamins made me feel worse.” In context ↗ Made symptoms worse
- “It was great for those 2 symptoms but it made my brain fog worse.” In context ↗ Made symptoms worse
- Loratadine (Claritin), Cetirizine (Zyrtec)“I think the H1 and H2 antihistamines twice a day have made me gain weight.” In context ↗ Side effects
- Cetirizine (Zyrtec)“I am having the all over itching that comes when you stop Zyrtec after long term use” In context ↗ Withdrawal problems
- Probiotics and fermented foods“Some probiotics have ingredients that increase histamine. I had unknowingly been taking them and making myself worse.” In context ↗ Made symptoms worse
- Atorvastatin (Lipitor)“Statins really contributed to my muscle aches and fatigue in a bad way.” In context ↗ Made symptoms worse
- Methylfolate (L-methylfolate, 5-MTHF)“It gave me headaches at first.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
Anytime I have pushed myself I've ended back in bed and miserable.
In context ↗ - Brain fog
My brain fog and muscle tenderness went away.
In context ↗ - POTS & dysautonomia
I am happy that the POTS symptoms are gone.
In context ↗ - Mast cell (MCAS) & allergies
I am having MCAS symptoms. I can no longer tolerate gluten, sugar, most pollens, dust, cat dander, some medications, and heat.
In context ↗ - Sleep problems
Stress, cold weather and insomnia due to stress.
In context ↗ - Pain & fibromyalgia
The cold weather really brought back my achy joints.
In context ↗ - Headaches & migraine
Every other reaction has been skin related, gut related or sinus/migraine.
In context ↗ - Gut problems
I am also having a lot of gut issues (bloating, IBS type symptoms)
In context ↗ - Heart symptoms & palpitations
my resting heart rate went back up to 128
In context ↗ - Neuropathy & tingling
My nerve pain improved once I got on prescription b12.
In context ↗ - Anxiety & low mood
My anxiety has especially improved.
In context ↗ - Vision problems
I had it initially. It rectified about 4 months in.
In context ↗ - Tinnitus
I had been feeling mainly back to normal except for my tinnitus.
In context ↗ - Flu-like symptoms
my lymph nodes in my armpits are hard, swollen and sore
In context ↗
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