Long COVID
Severe → much betterIll 4 years before improving or writingNeeds ongoing treatment
In bed for months with long COVID, now much better after acupuncture and Chinese herbs
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
I’ve had long covid for over 3 years.
In context ↗ - At worst: Severe
I was in bed for months with pain and fatigue.
In context ↗ - Now: Much better
I can eat more freely, walk 10,000 steps, ride my bike, socialize some and travel. I’d say I’m mild compared to where I was, which was moderate to severe.
In context ↗ - Began after: COVID
This all started for me after 1 vaccine and 1 Covid infection.
Read from 135 of their posts and comments; links to the 62 this page draws on
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Summary
A US woman in her early 50s fell ill with long COVID after a J&J vaccine and Covid infection, with excruciating facial pain, fatigue, MCAS and autonomic dysfunction; she was in bed for months. Mestinon gave her a year of near-normal life and tennis before it faded. From 2026 acupuncture and Chinese herbs in Munich brought 10,000-step days, cycling and travel; she calls herself mild but cannot play tennis yet.
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What they tried
What they credit
Mestinon· Helped a lot · main · wore offNicotine patches· Helped a lotAcupuncture· Helped a lotEnterosgel· Helped a lotChinese herbs (TCM formula)· Helped a lot · mainMontelukast· HelpedMouth taping· HelpedNAC ethyl ester· HelpedGlutathione injections· Helped · wore offMold detoxification protocol· HelpedIvermectin· HelpedUltrasound therapy on the vagus nerve· HelpedRed light therapy· HelpedB complex· HelpedPhosphatidylcholine· Helped
Also tried
Nortriptyline· Helped a lot · wore offGabapentin· HelpedGABA tea· HelpedSoundbath healing music· HelpedZyrtec, later Allegra· HelpedZyrtec, later Allegra· HelpedPepcid AC / famotidine· HelpedLow histamine diet· HelpedMycoPul· HelpedThiamax (TTFD thiamine)· HelpedHigh dose melatonin· HelpedLactoferrin· HelpedL ornithine· HelpedCastor oil in the nostrils· HelpedWeleda salt toothpaste· HelpedFurstenMed· HelpedNaturDao· HelpedCoQ10· HelpedEating small amounts every 4 hours· HelpedSaline nasal mist· HelpedSleeping on an incline· HelpedSauna· HelpedNeilMed rinses with xylitol· HelpedValacyclovir· No changeATP360· No changeHydrogen tablets· No changeMedrol pack· No changeDoxycycline· WorseTENS· WorseVitamin C· WorseCold and flu herbal tea· Not saidClonazepam (benzos)· Not saidHydroxychloroquine· Not saidItraconazole· Not saidBEG spray· Not saidDetox binders· Not saidBenadryl· Not saidCompression socks and electrolytes· Not saidCompression socks and electrolytes· Not saidLymphatic self-draining videos· Not saidOsteopathy· Not saidIntermittent fasting· Not saidLactoferrin nasal spray· Not said
Their words about each treatment
- Nortriptyline · Helped a lot
The neurologist put me on nortriptyline 20mg and it helped tremendously for 3 months.
In context ↗ - Gabapentin · Helped
For pain, which my nerve pain was off the charts, 20mg Nortriptyline and Gabapentin.
In context ↗ - Valacyclovir · No change
I’ve taken it for 2 years and haven’t noticed anything.
In context ↗ - Mestinon · Helped a lot
Mestinon gave me my life back.
In context ↗ - Montelukast · Helped
montelukast with the mast cells.
In context ↗ - Nicotine patches · Helped a lot
Nicotine patches made the biggest difference for me with energy.
In context ↗ - Acupuncture · Helped a lot
acupuncture and Chinese herbs are giving me my life back.
In context ↗ - GABA tea · Helped
I purchase the GABA tea at a shop with clean whole leaf tea. It helps me tremendously.
In context ↗ - Cold and flu herbal tea · Not said
I relax with the GABA and sweat with the cold and flu.
In context ↗ - Soundbath healing music · Helped
Nicotine patches, listening to soundbath healing (YouTube) and mouth taping helps me.
In context ↗ - Zyrtec, later Allegra · Helped
H1 + H2 blockers give me a lot of relief.
In context ↗ - Pepcid AC / famotidine · Helped
I also take famatodine and Zyrtec (together).
In context ↗ - Low histamine diet · Helped
Zyrtec and Pepcid AC. Low histamine diet.
In context ↗ - Clonazepam (benzos) · Not said
I’m on Mestinon, Montelukast and valacyclovir and clonazapem.
In context ↗ - NAC ethyl ester · Helped
I did try NAC ethyl ester which I noticed helped a little.
In context ↗ - MycoPul · Helped
The LC Dr that is treating more the root cause has me taking MycoPul once a day and ATP360 3 times a day.
In context ↗ - ATP360 · No change
Was taking ATP360 yet no change.
In context ↗ - Hydroxychloroquine · Not said
Hydroxychloroquine 200mg daily.
In context ↗ - Thiamax (TTFD thiamine) · Helped
It isn’t a fix all for me but it helps with my energy and gut health.
In context ↗ - Glutathione injections · Helped
I’m taking glutathione injections….they are helping.
In context ↗ - High dose melatonin · Helped
High dose melatonin.
In context ↗ - Mold detoxification protocol · Helped
She found mold/mycotoxins and has been going after that hard which has been making the difference.
In context ↗ - Itraconazole · Not said
Itraconazole. 4 months now.
In context ↗ - BEG spray · Not said
Primarily detox binders, glutathione injections, anti fungals and BEG spray.
In context ↗ - Ivermectin · Helped
Ivermectin helps.
In context ↗ - Lactoferrin · Helped
I love Lactoferrin and always feel better when I take it. Then after about 7-10 days I herx.
In context ↗ - Benadryl · Not said
Also added Benadryl because I read the combo is highly successful at stopping the replication of SARS 2.
In context ↗ - Ultrasound therapy on the vagus nerve · Helped
the thing that’s helped me the most is ultrasound therapy on my vagus nerve and focusing on my liver
In context ↗ - Compression socks and electrolytes · Not said
I use compression socks, electrolytes, meds/supplements and still struggle.
In context ↗ - Doxycycline · Worse
Yesterday I took my first dose and a few hours later (right after dinner) had a major herx/die off reaction.
In context ↗ - Red light therapy · Helped
Red light therapy helped.
In context ↗ - B complex · Helped
I noticed a change with B complex and Thiamax.
In context ↗ - L ornithine · Helped
L ornithine helps.
In context ↗ - Castor oil in the nostrils · Helped
the castor oil in the nostrils was almost immediate!
In context ↗ - Weleda salt toothpaste · Helped
Weleda salt toothpaste (I know, another toothpaste) it works great
In context ↗ - Hydrogen tablets · No change
I tried the hydrogen tablets from researched nutritionals. I took them daily for weeks. Nothing.
In context ↗ - Enterosgel · Helped a lot
The only binder I’ve had success using is enterosgel. Immediate effects.
In context ↗ - Phosphatidylcholine · Helped
started 1 Phosphatidylcholine capsule with lunch followed by enterosgel packet 60/90 min after lunch.
In context ↗ - FurstenMed · Helped
I started using an ultrasound, taking Phosphatidylcholine, FurstenMed, and enterosgel.
In context ↗ - Lymphatic self-draining videos · Not said
Doing lymphatic self draining videos.
In context ↗ - Osteopathy · Not said
I’ve tried a lot of different things, medications, supplements, acupuncture, osteopathy, etc.
In context ↗ - NaturDao · Helped
I take NaturDao. Won’t leave home without them.
In context ↗ - Medrol pack · No change
Unfortunately, no. I didn’t notice anything or reduction in inflammation.
In context ↗ - TENS · Worse
I had tens like acupuncture for my shoulder/neck/arm and it flared up pretty substantially
In context ↗ - Vitamin C · Worse
Unfortunately, I react to most oral vit c supplements
In context ↗ - CoQ10 · Helped
I guess I did notice a little uplift with COQ10
In context ↗ - Chinese herbs (TCM formula) · Helped a lot
Within a week of taking the herbs my gut was a lot better.
In context ↗ - Eating small amounts every 4 hours · Helped
Eating something even small every 4 hours during the day has made a difference.
In context ↗ - Intermittent fasting · Not said
I love intermittent fasting but it’s not for me right now.
In context ↗ - Saline nasal mist · Helped
Surprisingly arm and hammer simply saline nasal mist helped right away.
In context ↗ - Sleeping on an incline · Helped
I do sleep on an incline which helps with the head pressure
In context ↗ - Sauna · Helped
the first sauna I tried with LC was an infrared and I felt amazing afterwards.
In context ↗ - Lactoferrin nasal spray · Not said
recently Lactoferrin Nasal Spray (which you can get in Germany or Austria and probably online)
In context ↗ - NeilMed rinses with xylitol · Helped
I also increased nelimed rinses with xylitol and a drop of baby shampoo using the inversion method.
In context ↗
Approaches: POTS medication · Alternative therapies · Antihistamines & MCAS · Mould avoidance · Other drugs and medicines · Supplements · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2022 | long COVID after Covid infection; agonizing left-sided facial and jaw pain, stopped tennisAfter the J&J and a covid infection, I developed jaw pain, mouth pain, facial pain and Trigeminal Nueralgia type painIn context ↗ | Moderate | |
| 2022 | in bed for months with pain and fatigueI was in bed for months with pain and fatigue.In context ↗ | Severe | |
| July 2024 | new root-cause doctor, mold/mitochondrial protocol; slight improvementI’m already feeling a little better after 3 weeks.In context ↗ | Moderate | |
| Nov 2024 | Mestinon; back to tennis 2-3 times a week, no PEMMestinon gave me my life back.In context ↗ | Mild | Mestinon / pyridostigmine |
| May 2025 | internal tremors and spinal inflammation after weeks of feeling welljust recently had the internal tremors and spinal inflammation after feeling fabulous for weeks.In context ↗ | Moderate | |
| June 2025 | major flare after doing wellI had a major flare after doing well for awhile.In context ↗ | Moderate | |
| Aug 2025 | vagus nerve ultrasound therapy, enterosgel, phosphatidylcholine, liver/gut focusIt’s been a swift improvement compared to where I was.In context ↗ | Moderate | |
| Dec 2025 | mold numbers improving, brain fog goneAt least my mold numbers reflect progress, and my brain fog is gone.In context ↗ | Mild | |
| July 2026 | acupuncture and Chinese herbs in Munich raised autonomic baselineI have had a major autonomic baseline increase in only 1 week of acupuncture and herbs.In context ↗ | Mild | |
| Oct 2026 | off all western meds; walking 10,000 steps, cycling, travel; still cannot play tennisI can eat more freely, walk 10,000 steps, ride my bike, socialize some and travel.In context ↗ | Mild |
Adverse events
- Lactoferrin and colostrum“I felt good in it then, herxed. Tried again, slight herx.” In context ↗ Herx / die-off reaction
- Lactoferrin and colostrum“A few days of that major herx (spinal inflammation, internal tremors, felt like I was going to breakout all over, headache, feverish like my immune system turned on high)” In context ↗ Herx / die-off reaction
- Doxycycline (Vibramycin)“Yesterday I took my first dose and a few hours later (right after dinner) had a major herx/die off reaction. Shakes and all. Flu like, chills, serious head pressure. Scared me.” In context ↗ Herx / die-off reaction
- Glutathione“I’m on them. Once a week. They hurt like hell.” In context ↗ Side effects
- Hyperthermia and sauna“I could only tolerate 10-15 minutes and still flared a bit later.” In context ↗ Made symptoms worse
- Red and near-infrared light therapy“Same with red light therapy.” In context ↗ Made symptoms worse
- TENS machine“I had tens like acupuncture for my shoulder/neck/arm and it flared up pretty substantially” In context ↗ Made symptoms worse
- Thiamine / benfotiamine“Kept trying to up it and it was too much.” In context ↗ Side effects
- Mold avoidance / CIRS protocol“tried to detox mold too rapidly and set myself back” In context ↗ Herx / die-off reaction
- Vitamin C“Unfortunately, I react to most oral vit c supplements” In context ↗ Side effects
Symptoms mentioned
Brain fogBreathlessnessGut problemsHeadaches & migraineMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
If I played tennis I would crash for a day or two and could only do a few things in a day.
In context ↗ - Brain fog
my brain fog is gone
In context ↗ - POTS & dysautonomia
I’m a lot better yet have autonomic function issues, intermittent nerve pain and fatigue.
In context ↗ - Mast cell (MCAS) & allergies
Insane MCAS/histamine intolerance and fatigue.
In context ↗ - Sleep problems
I’m getting actual deep sleep.
In context ↗ - Pain & fibromyalgia
Neck pain, nerve pain, knee pain.
In context ↗ - Headaches & migraine
Sometimes it’s worse in the back of my head and swells up.
In context ↗ - Gut problems
I also have intermittent gut issues, again hard to tie it to anything specific.
In context ↗ - Neuropathy & tingling
left arm pain tingling numbness
In context ↗ - Muscle weakness
I lost muscle and grip strength.
In context ↗ - Breathlessness
I forgot what it felt like to breathe.
In context ↗
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