Long COVID
Very severe → much betterIll 2.5 years before improving or writingNeeds ongoing treatment
Bedbound with long COVID, much improved after HELP apheresis and aspirin
- Condition
- Long COVID
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 2.5 years
- Last post
- Jul 2024
In their words
- Condition: Long COVID
I now have long covid and it feels so much like lyme EBV
In context ↗ - At worst: Very severe
Before I was so sick I was bedbound 90% of the time and unable to provide most self care... I could hardly sit or stand or even think.
In context ↗ - Now: Much better
I'd say 80% most days and 40%-60% when in a crash ... I never got as bad as I was but did not stay as healthy as immediately after treatment.
- Began after: COVID
I started with symptoms Dec 16th. It started as a headache and very upset stomach. Tested positive the 17th.
In context ↗ - Says they never had: Loss of smell or taste
I had nearly every symptom except lost of taste and smell
Read from 125 of their posts and comments; links to the 40 this page draws on
- Mar 2022
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Summary
Ocean 21330 caught COVID in December 2021 and by February 2022 was bedbound in severe pain with migraines, palpitations and numbness. They credit HELP apheresis in Cyprus, at 1,685 euros a session, as a stepwise change, along with aspirin and Plavix; by April 2022 they were much improved but still had fatigue, PEM and brain fog.
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What they tried
What they credit
aspirin and Plavix· Helped a lotHELP apheresis· Helped a lot · mainLDN· Helped a lot · wore offPerrin massage and lymphatic drainage· Helped a lotVedicinals· Helped a lotimmunoadsorption (IA)· Helped a lot · wore offNUCCA chiropractor· Helped a lotsmall salty meals, Gatorade and compression socks· Helpedsmall salty meals, Gatorade and compression socks· HelpedNiacin· Helpedfish oil / omega 3· HelpedTurmeric· HelpedPepcid· HelpedZyrtec (later Claritin)· HelpedZyrtec (later Claritin)· HelpedSingulair· Helpedmindfulness and breathing exercises· Helpedivermectin· Helped · wore offIV vitamin cocktail· Helped20-4 intermittent fasting / Tom Bunker's autophagy diet· Helpediron tablets (Flinstones with iron)· Helpednattokinase, lumbrokinase and serrapeptase· Helpednattokinase, lumbrokinase and serrapeptase· Helpednattokinase, lumbrokinase and serrapeptase· Helpedtriple antibiotic protocol for Lyme (doxycycline, Augmentin, cefuroxime)· HelpedAIP, low histamine, Paleo and Keto diet· Helpedpropranolol· HelpedVIP and Vilon peptides nasal spray· HelpedVIP and Vilon peptides nasal spray· Helpedubiquinol· Helpedfludrocortisone· Helped
Also tried
procaine infusion· Helped a lot · wore offGustavo's plan for antivirals· Helped a lotpacing and resting· HelpedCBD/CBN· HelpedFLCCC i-recover, Dr. Leo Galland and Dr. Wentzel supplement plans· HelpedHBOT· Helped · wore offTollovid· Helped · wore offhydrocortisone· Helpedsalt gargle, saline nasal spray and saline nebulizer· HelpedINUSpherese· No changevagus nerve maneuvers (massage and cold shower)· No changepravastatin· No changeValtrex· No changemaraviroc· No changestrict AIP diet· Worseantibiotics for a sinus infection· Not saidginger and garlic· Not saidNAC and liposomal glutathione· Not saidNAC and liposomal glutathione· Not saidR-alpha lipoic acid (with red yeast rice)· Not saidArtesunate· Not said
Their words about each treatment
- pacing and resting · Helped
I think pacing and staying in my energy envelop has alleviated the heart issues.
In context ↗ - antibiotics for a sinus infection · Not said
had antibiotics for a secondary sinus infection
In context ↗ - strict AIP diet · Worse
I started a strict AIP diet and boy did I get sicker.
In context ↗ - small salty meals, Gatorade and compression socks · Helped
Salt, gatorade, small frequent salty meals for dysautonomia.
In context ↗ - aspirin and Plavix · Helped a lot
I find what helps me the most is 1-3 full dose aspirin a day with ppi plus plavix.
In context ↗ - Niacin · Helped
maybe nicatinic acid helped a bit
In context ↗ - CBD/CBN · Helped
Cbd/cbn - takes the edge off the pain
In context ↗ - Pepcid · Helped
I did pepcid, zyrtec and Singulair and I felt much less itchy/inflamed in 1 to 2 weeks.
In context ↗ - FLCCC i-recover, Dr. Leo Galland and Dr. Wentzel supplement plans · Helped
I am taking pretty much everything of the flccc i-recover protocol.
In context ↗ - mindfulness and breathing exercises · Helped
Also want to add that mindfulness and breathing exercises have helped too.
In context ↗ - ivermectin · Helped
Just got ivermectin on Thursday and really felt better on Friday
In context ↗ - HELP apheresis · Helped a lot
I got on the HELP Apheresis list and after my first treatment felt 75% better.
In context ↗ - HBOT · Helped
HBOT helped for 4 hrs and didn't make my short list (although I never did 10-20.consecutive sessions)
In context ↗ - IV vitamin cocktail · Helped
The HBOT and IV vitamins have also seemed to help.
In context ↗ - 20-4 intermittent fasting / Tom Bunker's autophagy diet · Helped
I am already doing an AIP diet and 20-4 intermittent fasting but this took autophagy to the next level.
In context ↗ - procaine infusion · Helped a lot
The procaine has had amazing results for me. My brain fog significantly improved and so did my fight of flight response.
In context ↗ - INUSpherese · No change
Little to no improvement with 2 INUSpherese sessions
In context ↗ - vagus nerve maneuvers (massage and cold shower) · No change
I tried all the vagus nerve maneuvers from massage to cold shower and nothing would help.
In context ↗ - Tollovid · Helped
I had 4 days of feeling perfect and 8 days of feeling great and then it dwindled.
In context ↗ - LDN · Helped a lot
I've had some great luck with LDN for energy.
In context ↗ - Gustavo's plan for antivirals · Helped a lot
I've finally cured my PEM sore throat and brain fog with his plan for antivirals.
In context ↗ - iron tablets (Flinstones with iron) · Helped
Getting iron level up. My ferritin is still terrible, but I have gotten it from the teens to the high 20s and low 30s.
In context ↗ - nattokinase, lumbrokinase and serrapeptase · Helped
Blood stuff. Nattokinase, Lumbrokinase, plavix, aspirin.
In context ↗ - ginger and garlic · Not said
3000-5000 mg ginger 2x a day. 3000-5000mg garlic 2x a day.
In context ↗ - NAC and liposomal glutathione · Not said
NAC 3000 mg 2x a day. ... Liposomal glutathione 300mg 2x a day.
In context ↗ - R-alpha lipoic acid (with red yeast rice) · Not said
R alpha lipoic acid. (Still playing with dosing).
In context ↗ - pravastatin · No change
Maravoric and pravistatin did nothing for me.
In context ↗ - triple antibiotic protocol for Lyme (doxycycline, Augmentin, cefuroxime) · Helped
I also tried an aggressive triple antibiotic protocol for lyme for 1 month.
In context ↗ - AIP, low histamine, Paleo and Keto diet · Helped
I follow a mix of AIP, low histamine, Paleo, Keto combined with a 20-4 intermittent fasting to promote autophagy. This really does seem to help
In context ↗ - Perrin massage and lymphatic drainage · Helped a lot
Perrin massage and lymphatic drainage. This has also been a game changer.
In context ↗ - propranolol · Helped
Propranolol has helped my ANS dysfunction, POTS and heart palpitations and allowed me to be upright
In context ↗ - Vedicinals · Helped a lot
Vedicinals. This combined with VIP and Vilon has really gotten me my next stepwise change.
In context ↗ - VIP and Vilon peptides nasal spray · Helped
It turned off me/cfs feeling for 1 day each and I can feel the VIP especially working to reduce inflammation 1 hr after use.
In context ↗ - hydrocortisone · Helped
Hydrocortisone in small doses in the AM helps my low cortisol and gives me energy.
In context ↗ - ubiquinol · Helped
High dose ubiquinol as a PEM shielded and buster. 900mg -1800mg.
In context ↗ - salt gargle, saline nasal spray and saline nebulizer · Helped
Salt gargle, saline nasal spray, saline nebulizer. This has helped my sore throat
In context ↗ - Valtrex · No change
I am on valtrex but don't notice much.
In context ↗ - Artesunate · Not said
50mg Artesunate for hhv6 2x a day.
In context ↗ - immunoadsorption (IA) · Helped a lot
With IA, I went in as a mild ME patient and felt nearly perfect after each session... although after a month or so, feeling perfect wore off.
In context ↗ - NUCCA chiropractor · Helped a lot
I also saw a nucca chiropractor and this has been my next giant stepwise change.
In context ↗ - fludrocortisone · Helped
fludrocortisone, propranolol and ldn helped the cardiac and OI quite a lot.
In context ↗
Approaches: H1 antihistamines · H2 blockers · POTS medication · Alternative therapies · Antibiotics · Anticoagulants · Antihistamines & MCAS · Apheresis · Beta-blockers · Diet · Mind-body practices · Other drugs and medicines · Peptides · 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 |
|---|---|---|---|
| Dec 2021 | COVID-19 with headache and upset stomachI started with symptoms Dec 16th. It started as a headache and very upset stomach. Tested positive the 17th.In context ↗ | Mild | |
| February 2022 | bedbound with severe pain, headaches, numbness and palpitationsby February was bedbound in the fetal position unable to leave my bedroom or sit-up at timesIn context ↗ | Very severe | |
| 24 Feb 2022 | first HELP apheresis session; able to sit, stand, walk and talkI felt amazing after the treatment. I was walking. Talking. Light didn't bother my eyes. ... I even went for an evening walk and made it to 10,000 steps!!In context ↗ | Moderate | HELP apheresis / plasmapheresis |
| 19 Mar 2022 | after five HELP apheresis sessions they were nearly symptom-freeI have nearly no symptoms anymore and walked 20K steps without crashing.In context ↗ | Mild | HELP apheresis / plasmapheresis |
| 24 Mar 2022 | crashed after a short walk with sore throat and heavy bodyOn March 24th I crashed bad. ... I spent most of the whole day in bed feeling quite sickIn context ↗ | Severe | |
| 7 Apr 2022 | consistently 75% better, resting heart rate back to their pre-illness 74 bpmI am feeling very consistently 75% better. ... My resting heart rate continues to improve and is at 74bpm todayIn context ↗ | Mild | HELP apheresis / plasmapheresis |
| 17 Nov 2022 | much better and back at work, many days feeling like their old selfI worked every day to get well and am much better and back at work. ... there are many times and days that I feel like my old selfIn context ↗ | Mild | HELP apheresis / plasmapheresis |
| 18 Apr 2023 | 60% on their own disability scale, working full time from homeI was a 10% on the disability scale 14 months ago and now I am at a 60%.In context ↗ | Mild | HELP apheresis / plasmapheresis |
| 18 Sep 2023 | huge gain in energy after six weeks of NUCCA chiropractic alignmentAfter 6 weeks of having my upper cervical spine in alignment, I noticed a huge improvement in energy levels and other lingering symptoms.In context ↗ | Mild | |
| 5 Jul 2024 | still well above their worst but the gains partly faded; plans yearly apheresisI never got as bad as I was but did not stay as healthy as immediately after treatment. I think I need to go once a year to maintain best health.In context ↗ | Mild |
Adverse events
- Elimination diets (other)“I started a strict AIP diet and boy did I get sicker.” In context ↗ Made symptoms worse
- HELP apheresis / plasmapheresis“I had a bit of an episode where my blood pressure dropped and I got very scared” In context ↗ Low blood pressure or fainting
- HELP apheresis / plasmapheresis“it felt like 2 HELP sessions per week was wiping me out” In context ↗ Made symptoms worse
- HELP apheresis / plasmapheresis“I did have a blood pressure drop and pass out during the procedure” In context ↗ Low blood pressure or fainting
- HELP apheresis / plasmapheresis“felt very sick with flu/cold like symptoms after ... I just have achey joints and general blah feeling now” In context ↗ Made symptoms worse
- Manual lymphatic drainage“The first time it made me quite ill” In context ↗ Made symptoms worse
- Antibiotics (unspecified)“Had a few bouts of nausea but nothing terrible.” In context ↗ Gut side effects
- Low-dose naltrexone“Day 1 at .5mg I thought I was on crack and cleaned my house til 4am I had so much energy. Had a few days of energy that felt like 10 cups of espresso in a bad way” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
I still need a lot of rest and sleep and crash sometimes.
In context ↗ - Brain fog
Some days when I am feeling quite swollen and puffy, inflamed and foggy
In context ↗ - POTS & dysautonomia
Also, I have hyperadrenergic POTS.
In context ↗ - Sleep problems
I still have terrible insomnia though... oh well.
In context ↗ - Pain & fibromyalgia
My muscles ache a ton. That can still be pretty bad especially at night or during PEM.
In context ↗ - Headaches & migraine
The other day it was a bad right side headache and the next day it was chest pain.
In context ↗ - Gut problems
It started as a headache and very upset stomach.
In context ↗ - Light & noise sensitivity
Light and noise are mostly unbearable.
In context ↗ - Breathlessness
A bit of breathlessness with exertion. That is mostly gone.
In context ↗ - Heart symptoms & palpitations
Sometimes it still freaks out and can be 120-130. I also have episodes of SVT still.
In context ↗ - Muscle weakness
every part of my body had 0 energy and was super heavy
In context ↗ - Neuropathy & tingling
The right side of my face still goes numb and tingly when I crash.
In context ↗ - Anxiety & low mood
I got quite depressed that I was never going to get well
In context ↗ - Flu-like symptoms
This has helped my sore throat that creeps up and is almost always present.
In context ↗ - Tinnitus
my right ear would ring. That is mostly gone.
In context ↗ - Vision problems
Started to get weird vision
In context ↗ - Mast cell (MCAS) & allergies
Pepcid, Zyrtec for MCAS/histamine.
In context ↗
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