Long COVID
Severe → much betterIll 6 years before improving or writingNeeds ongoing treatment
Severely ill with long COVID for over two years, now much better with myofascial release
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6 years
- Last post
- Jul 2026
In their words
- At worst: Severe
My symptoms were severe
In context ↗ - Now: Much better
I’ve made significant improvements but still not truly what I’d call fully functional.
In context ↗ - Began after: COVID
First covid infection May/June 2020.
In context ↗
Read from 121 of their posts and comments; links to the 57 this page draws on
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Summary
A US nurse practitioner caught COVID in May 2020 and was severely ill for over two years with encephalitis, migraine, Bell's palsy, dysautonomia and suicidal despair. Hyperbaric oxygen gave temporary relief, while myofascial release, modafinil and supplements helped gradually; amantadine was tried but did not noticeably help. They report significant gains but are not fully functional, still troubled by eye, neck and nerve symptoms.
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What they tried
What they credit
Amantadine· Helped a lot · mainAtivan (lorazepam)· Helped a lotketamine infusions· Helped a lotHBOT· Helped · main · wore offModafinil· Helped · mainadderall· Helpedprednisone / methylprednisolone· Helpedred light therapy· Helpedexternal vagus nerve stimulation device· Helpedphysical therapy· Helped
Also tried
prazosin· Helped a lotantibiotic eye drops· Helpedsteroid eye drops· HelpedOTC eye drops and gels· Helpedoccipital and superficial nerve blocks· Helped · wore offmyofascial release therapy· Helpedice packs and ice mask· HelpedNatto/Serrap· Helpedpycnogenol· HelpedLyrica (pregabalin)· Helpedsumatriptan· Helpedacyclovir· Helpedblood donation / blood draws· Helped · wore offiron 325 mg· HelpedIvabradine· Helpedacupuncture· Helpedmeditation and yoga· Helpedmouthwash gargle (CPC/Listerine)· Helpedneti pot and saline rinse· Helpedcalcium channel blocker· No changehigh dose B2· No changeEMS device· No changeportable oxygen generator· No changeH1/H2 blockers· No changeAmbien· No changeTMS· WorseGabapentin/neurontin· Worsepropranolol· Worsemanuka honey healing drops· Worsezinc supplements· WorseCOVID vaccination as treatment· Worseplasma rich protein (PRP) eye drops· Much worsecyclosporine eye drops· Not saidAyurvedic herbal formulation and protocol· Not saidAyurvedic cleansing diet and strict anti-inflammatory diet· Not saidsupplements, mostly anti-inflammatory· Not saidmemantine (numenda)· Not saidmonolaurin· Not saidLDN· Not saidBotox injections· Not saidbromelain capsules· Not saidStreptococcus salivarius K12 probiotic· Not saidcollagen powder· Not saidsofosbuvir· Not saidAER002 monoclonal antibody infusion (trial)· Not saidOmega 3· Not saidNAC· Not said
Their words about each treatment
- antibiotic eye drops · Helped
Prescribed antibiotic eye drops.
In context ↗ - steroid eye drops · Helped
Prescribed steroid eye drops.
In context ↗ - cyclosporine eye drops · Not said
cyclosporine eye drops, OTC gel at night.
In context ↗ - OTC eye drops and gels · Helped
Nearly resolved using nite time eye gels, hypertonic saline, and preservative free drops during the day.
In context ↗ - Ayurvedic herbal formulation and protocol · Not said
I saw an Ayurvedic doctor and coincidentally was given an herbal formulation for inflammation and purifying the blood.
In context ↗ - Ayurvedic cleansing diet and strict anti-inflammatory diet · Not said
I did start following a very strict anti inflammatory diet those last few weeks
In context ↗ - supplements, mostly anti-inflammatory · Not said
I started taking a ton of supplements, mostly anti-inflammatory.
In context ↗ - TMS · Worse
I thought it might be depression and even had treatment (TMS) which actually made it worse.
In context ↗ - occipital and superficial nerve blocks · Helped
Two occipital nerve blocks which wore off after a few days
In context ↗ - HBOT · Helped
Dramatic improvement in brain fog, energy level, sense of well being.
In context ↗ - myofascial release therapy · Helped
The only thing that has helped is myofascial release therapy.
In context ↗ - ice packs and ice mask · Helped
I found an ice mask that wrapped around the head (Amazon) worked very well.
In context ↗ - Natto/Serrap · Helped
I now take Natto/Serrap/pycnogenol because I also had continuous bruising which has now stopped.
In context ↗ - Lyrica (pregabalin) · Helped
Lyrica is somewhat helpful with nerve pain
In context ↗ - Gabapentin/neurontin · Worse
Tried neurontin/Gabapentin but it was too sedating.
In context ↗ - memantine (numenda) · Not said
I started on memantine (numenda) another NMDA RA for Covid migraines and fatigue but switched to amantadine
In context ↗ - Amantadine · Helped a lot
This has completely changed my life in terms of brain fog and energy levels.
In context ↗ - calcium channel blocker · No change
Prescribed a calcium channel blocker, and high dose B2 which did nothing.
In context ↗ - Modafinil · Helped
I think it’s made a significant difference in my ability to focus and just feel more wide awake.
In context ↗ - adderall · Helped
It’s helpful, no negative effects, but still doesn’t have the dramatic results it had before covid.
In context ↗ - sumatriptan · Helped
I also have sumatriptan and lyrica which are somewhat helpful.
In context ↗ - Ativan (lorazepam) · Helped a lot
I’m not advocating benzodiazepines as many people can become addicted but for me this saved my life.
In context ↗ - ketamine infusions · Helped a lot
referred me for ketamine infusions which I’m pretty sure saved my life
In context ↗ - prednisone / methylprednisolone · Helped
I had some leftover prednisone which did seem to help.
In context ↗ - acyclovir · Helped
the antiviral acyclovir seems to lessen length of the symptoms.
In context ↗ - monolaurin · Not said
Monolaurin is supposed to be helpful. Not sure if I’ve noticed any improvement though.
In context ↗ - blood donation / blood draws · Helped
I did get some relief from donating blood albeit it was short lived.
In context ↗ - iron 325 mg · Helped
I started on iron 325mg every other day and the level increased to near normal within 2 weeks.
In context ↗ - propranolol · Worse
Propranolol was moderately helpful but caused a bit of a cognitive dulling and low mood after a couple of weeks so I stopped.
In context ↗ - prazosin · Helped a lot
Prazosin was very effective.
In context ↗ - LDN · Not said
I’m also taking LDN 3-4mg daily for general inflammation.
In context ↗ - Ivabradine · Helped
Made a big difference with palpitations at night and virtually no negative side effects, for me.
In context ↗ - red light therapy · Helped
also red light therapy but it’s not a sustainable solution due to the cost.
In context ↗ - external vagus nerve stimulation device · Helped
External vagus nerve stimulation device, myofascial release therapy and PT to align spine.
In context ↗ - EMS device · No change
For the Bell’s palsy I invested in an EMS device to stimulate the muscles but haven’t seen results yet.
In context ↗ - portable oxygen generator · No change
Tried portable oxygen generator. Used it everyday for maybe three weeks and didn’t note any difference.
In context ↗ - Botox injections · Not said
Also tried Botox injections, locally on the scalp and neck muscles
In context ↗ - acupuncture · Helped
Ice packs, lyrica, yoga, attempting to maintain near perfect posture, acupuncture.
In context ↗ - meditation and yoga · Helped
Meditation helped a ton in slowing down ADHD brain enough to be able to think and focus.
In context ↗ - mouthwash gargle (CPC/Listerine) · Helped
I use mouthwash CPC or Listerine and gargle as often as possible.
In context ↗ - neti pot and saline rinse · Helped
with aggressive gargling, neti pot, saline rinse
In context ↗ - H1/H2 blockers · No change
I’ve tried HI H2 blockers off and on but never notice any improvement, just feel sedated.
In context ↗ - manuka honey healing drops · Worse
I tried some manuka honey healing drops and same thing.
In context ↗ - plasma rich protein (PRP) eye drops · Much worse
they did not work for me. In fact they made my symptoms much much worse.
In context ↗ - bromelain capsules · Not said
I take bromelain capsules instead.
In context ↗ - Streptococcus salivarius K12 probiotic · Not said
I’ve been taking this too, just as an add-on piled on top of everything else.
In context ↗ - zinc supplements · Worse
Taking zinc supplements always makes me extremely nauseous
In context ↗ - collagen powder · Not said
I recently added collagen powder. 1-2 scoops every day.
In context ↗ - sofosbuvir · Not said
I tried one months supply twice and IDK if it made a difference or not.
In context ↗ - AER002 monoclonal antibody infusion (trial) · Not said
Had the single infusion a little over 3 months ago and honestly I don’t feel much different.
In context ↗ - Ambien · No change
Tried all of the above plus ambien, and nothing.
In context ↗ - Omega 3 · Not said
Added Omega 3, NAC, healthy fats, nutrient dense clean foods
In context ↗ - COVID vaccination as treatment · Worse
But after the second vaccine I had severe cognitive issues. ... Lasted 3-4 months. I had to quit my job.
In context ↗
Approaches: Hyperbaric & oxygen · Alternative therapies · Benzodiazepines · Other drugs and medicines · Physiotherapy and rehab · Stimulants · Vagus nerve stimulation
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 14 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 2020 | COVID-19 infection; conjunctivitis and blurred vision firstFirst covid infection May/June 2020.In context ↗ | Not stated | |
| July 2021 | viral encephalitis, Bell's palsy, daily migraines, autonomic dysfunctionI went from encephalitis, daily migraines, photophobia, insane sound sensitivity, Bell’s palsy, and autonomic dysfunctionIn context ↗ | Severe | |
| mid 2022 | profound anhedonia, severe depression and suicidal ideationI reached a point of no return believing 100% that the suffering would never end.In context ↗ | Severe | |
| late 2022 | crashed after returning to a 60-hour-a-week jobtried jumping back into a 60hr/week job late 2022In context ↗ | Severe | |
| February 2023 | at least 80% better, some days 90%at least 80% better, some days 90%In context ↗ | Mild | |
| February 2024 | able to walk 30 minutes most days without consequencesI know I’ve been able to walk at a moderate pace for around 30 minutes with no obvious consequences 3/4 times per week.In context ↗ | Mild | |
| January 2026 | amantadine and ivabradine brought big gains in brain fog, energy and night palpitationsThis has completely changed my life in terms of brain fog and energy levels.In context ↗ | Mild | Amantadine |
| July 2026 | significant cognitive improvement but still not fully functionalI’ve made significant improvements but still not truly what I’d call fully functional.In context ↗ | Mild |
Adverse events
- rTMS (transcranial magnetic stimulation)“even had treatment (TMS) which actually made it worse ... went into severe depression, caused by TMS.” Mood or psychiatric effects
- Pregabalin (Lyrica)“After I just told him I decreased the dose due to sedation.” In context ↗ Side effects
- Amphetamine salts (Adderall)“Initially I took 2.5mg - 5mg adderall before getting out of bed but tapered off due to palpitations.” In context ↗ Heart rhythm problems
- Gabapentin (Neurontin)“Tried neurontin/Gabapentin but it was too sedating.” In context ↗ Side effects
- Propranolol (Inderal)“Yes and mild depression too. ... Propranolol was moderately helpful but caused a bit of a cognitive dulling and low mood after a couple of weeks so I stopped.” Mood or psychiatric effects
- “I had a block done with 100% success but it was very invasive and unfortunately caused tissue trauma.” In context ↗ Other
- COVID vaccination as treatment“But after the second vaccine I had severe cognitive issues. ... Lasted 3-4 months. I had to quit my job.” In context ↗ Made symptoms worse
- Monoclonal antibodies (unspecified)“Days 2-3 - worsening sore throat, hoarse voice, increased facial numbness which I always have to some extent but more severe.” In context ↗ Made symptoms worse
- Amphetamine salts (Adderall)“My psychiatrist increased the dose and this did nothing, but cause anxiety. ... I've even tried taking 1-2mg, like a tiny crumb and I just feel horrible.” In context ↗ Mood or psychiatric effects
- Zinc“Taking zinc supplements always makes me extremely nauseous” In context ↗ Gut side effects
- H2 blockers (unspecified)“I've tried HI H2 blockers off and on but never notice any improvement, just feel sedated.” In context ↗ Side effects
- “I was asking about PRP because they did not work for me. In fact they made my symptoms much much worse.” In context ↗ Made symptoms worse
- “Ouch! I tried some manuka honey healing drops and same thing.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityLoss of smell or tasteMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
Tried an hour and was totally flattened for over two weeks.
In context ↗ - Brain fog
I still get mental fatigue, can’t concentrate for hours, but I’m relatively functional.
In context ↗ - Vision problems
I still can’t see. Visual acuity is all over the place.
In context ↗ - Headaches & migraine
Squeezing tight head pressure day and night for many months.
In context ↗ - Neuropathy & tingling
alternating burning, tingling, numbness
In context ↗ - Anxiety & low mood
Anxiety was all new. Panic attacks, absolute terror, and fear of being left alone even for a few minutes.
In context ↗ - Sleep problems
insomnia all seem to be worse
In context ↗ - Tinnitus
constant pulsation in both ears
In context ↗ - POTS & dysautonomia
I had the dysautonomia diagnosis by PCP and am on ivabradine
In context ↗ - Heart symptoms & palpitations
palpitations on most days
In context ↗ - Muscle weakness
muscle weakness in my shoulder and visible atrophy in the deltoid
In context ↗ - Loss of smell or taste
I lost my sense of taste for several months and it’s never been the same since.
In context ↗ - Light & noise sensitivity
photophobia, insane sound sensitivity
In context ↗ - Pain & fibromyalgia
I still have the occipital sharp intense neck pain
In context ↗
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