Long COVID
Severe → no benefitIll for 3.5 yearsNeeds ongoing treatment
Bedridden with long COVID, unable to work, no lasting benefit from drugs or supplements
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 3.5 years
- Last post
- Sep 2024
In their words
- Condition: Long COVID
I’ve been so sick the last two years with long Covid sense September 2021
In context ↗ - At worst: Severe
I’m practically bedridden with so many specialist and diseases
In context ↗ - Now: No benefit
I have same symptoms plus few more since covid times
In context ↗ - Began after: a vaccination
I told several doctors in August 2021 that the vaccine brought out all kinds of autoimmune issues
Read from 32 of their posts and comments; links to the 22 this page draws on
Summary
A New Jersey mother of four fell ill in 2021 after COVID and vaccination, with fatigue, breathlessness, gut and bladder problems, pain, blurred vision and cognitive trouble. Steroids and antibiotics gave temporary relief, but the biologic Cimzia and other drugs seemed to worsen her. She tried many supplements, diets and medications without lasting benefit and remained largely bedridden by September 2024, unable to work or care for her children.
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What they tried
Also tried
Prednisone / steroids· Helped · wore offCreatine· HelpedProtein shake· HelpedDrinkable Activia· HelpedAlka-Seltzer· HelpedGinger, cayenne, honey and apple cider vinegar drink· HelpedGinger, cayenne, honey and apple cider vinegar drink· HelpedGinger, cayenne, honey and apple cider vinegar drink· HelpedAspirin· HelpedIron pill· HelpedVitamin C· HelpedVitamin E· HelpedVitamin D· HelpedAllergy medicines· HelpedChiropractor· HelpedArchar gel injections· WorseAntibiotics (doxycycline, cipro)· WorseAntibiotics (doxycycline, cipro)· WorseAnti-thyroid medication· WorseB12· WorseCimzia (biological)· Much worseOregano oil· Not saidPre-probiotics· Not saidColon cleanse· Not saidJuicing· Not saidHealthy diet / no sugar· Not saidThyroid hormones (unspecified)· Not saidAmphetamine salts (Adderall)· Not said
Their words about each treatment
- Cimzia (biological) · Much worse
Now they have me on biological cimzia 5 months and I just cancelled next 1 because i believe it’s making me so much worse.
In context ↗ - Archar gel injections · Worse
now on archar gel injections & although they are somewhat keeping inflamation down I’m having harder time breathing,lethargic can’t go anywhere barely or do anything,increased heart rate,blood pressure & diabetes symptoms now.
In context ↗ - Prednisone / steroids · Helped
Only thing takes down my inflamation is predinasone
In context ↗ - Antibiotics (doxycycline, cipro) · Worse
Put me on doxycycline which makes me so sick.
In context ↗ - Anti-thyroid medication · Worse
months of diarhea looking back now think caused by thyroid meds
In context ↗ - Creatine · Helped
I think creatine helps me but not positive yet
In context ↗ - Protein shake · Helped
I do feel tad better with daily protein shake
In context ↗ - Drinkable Activia · Helped
1 or 2 drinkable activia seems to keep girly infections away
In context ↗ - Alka-Seltzer · Helped
I been taking Alia-seltzer last few days and actually think might be helping
In context ↗ - Ginger, cayenne, honey and apple cider vinegar drink · Helped
it helps relieve the 2 year constipation issue
In context ↗ - Aspirin · Helped
I believe aspirin is helping me also
In context ↗ - Iron pill · Helped
Took iron pill and vitamin c last few days,think maybe It’s helping, I can breathe better.
In context ↗ - Vitamin E · Helped
Dr put me on vitamin E & has been helping
In context ↗ - Vitamin D · Helped
vitamin D, 50,000 every week now
In context ↗ - B12 · Worse
B12, think, making me feel weird, not working
In context ↗ - Oregano oil · Not said
oregano, oil for infection, maybe not sure
In context ↗ - Allergy medicines · Helped
I take 2 allergy medicines a day
In context ↗ - Pre-probiotics · Not said
pre-probiotics, to a colon cleanse
In context ↗ - Chiropractor · Helped
I have had some relief through them
In context ↗ - Juicing · Not said
I am juicing often these days because I have no appetite
In context ↗ - Healthy diet / no sugar · Not said
I’ve tried every vitamin,medication,diet, juicing, eating healthy, no sugar
In context ↗ - Amphetamine salts (Adderall) · Not said
I've been taking adderall for years but recently it puts me to sleep
In context ↗
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. The chart starts 22 months after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| May 2021 | became ill with long COVIDMine started May 2021In context ↗ | Not stated | |
| 2023-03-17 | practically bedriddenI’m so lethargic I practically bedriddenIn context ↗ | Severe | |
| 2023-06-07 | steroids and antibiotics gave temporary reliefIf I take steroids and antibiotics, one time I went for six months, but usually it only last for a few weeksIn context ↗ | Mild | Corticosteroid pulses |
| 2024-09-26 | still mostly housebound and weakAll I do is watch tv, sometimes if I'm lucky I can do few dishesIn context ↗ | Severe |
Adverse events
- “Now they have me on biological cimzia 5 months and I just cancelled next 1 because i believe it’s making me so much worse” In context ↗ Made symptoms worse
- “since I’ve been getting this Cimzia biological shot I’ve had 1 respiratory issue after another” In context ↗ Other
- “I really think I’ve gottin so much worse from needle treatments rhemo forced in me. They literally almost killed me. Infection after infection” In context ↗ Made symptoms worse
- “now on archar gel injections & although they are somewhat keeping inflamation down I’m having harder time breathing,lethargic can’t go anywhere barely or do anything,increased heart rate,blood pressure” In context ↗ Side effects
- Ciprofloxacin (Cipro)“cipro almost killed me” In context ↗ Side effects
- Doxycycline (Vibramycin)“Put me on doxycycline which makes me so sick. I can’t take that for 3 weeks.” In context ↗ Side effects
- Thyroid hormones (unspecified)“months of diarhea looking back now think caused by thyroid meds” In context ↗ Gut side effects
- Corticosteroid pulses“steroids seems to be the only thing that takes it away but it makes me sweat really bad” In context ↗ Side effects
- Vitamin B12“B12, think, making me feel weird, not working” In context ↗ Side effects
- Amphetamine salts (Adderall)“I've been taking adderall for years but recently it puts me to sleep” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaTemperature regulationVision problems
Their words about their symptoms
- Brain fog
memorys bad im forgetful,confused
In context ↗ - POTS & dysautonomia
heart rate ups & Downs’s, heart palpatations
In context ↗ - Mast cell (MCAS) & allergies
I’ve never had allergies in my life 48yrs old and now I take 2 allergy medicines a day
In context ↗ - Pain & fibromyalgia
I’m always in pain
In context ↗ - Headaches & migraine
constant headache above my eyes
In context ↗ - Gut problems
I’ve been constipated for 2 yrs now
In context ↗ - Breathlessness
struggling to breathe doing regular everyday things
In context ↗ - Heart symptoms & palpitations
heart palpatations and high blood pressure lately
In context ↗ - Muscle weakness
too weak to even stand up most of the day
In context ↗ - Anxiety & low mood
I cry every day
In context ↗ - Temperature regulation
actually freezing lately especially feet and hands
In context ↗ - Vision problems
eyes are so blurry
In context ↗ - Hair loss
my hair is falling out and not growing anymore
In context ↗