Long COVID
Severe → much betterIll 10 months before improving or writing
Bedridden with long COVID for three months, now much better with Diamox and diet
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 months
- Last post
- Nov 2023
In their words
- Condition: Long COVID
12 months long hauler here.
In context ↗ - At worst: Severe
From September 2022 to February 2023 i was in total hell with 24/7 migraines, posts, weakness, tingling, burning, housebound / bedbound.
In context ↗ - Now: Much better
Now i’m in a stable 75%, i can work and live my life again in a “soft” version.
In context ↗ - Began after: COVID
12 months long hauler here.
In context ↗ - Says they never had: Post-exertional malaise
No POTS, no PEM.
Read from 62 of their posts and comments; links to the 27 this page draws on
Summary
Long COVID from spring 2022 left Coast 67140 bedridden for three months, then housebound or bedbound at about 15% of normal until February 2023. Self-experimenting with supplements, a low-carb, low-histamine diet, nicotine patches, cerebrolysin, Valsartan and CoQ10, later low-dose Diamox, brought them to a stable 75% able to work and live a 'soft' version of life. Burning skin and POTS resolved; brain fog and head pain persisted.
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What they tried
What they credit
Cerebrolysin IV· Helped a lot · mainlow dose Diamox· Helped a lotapolactoferrin· HelpedLumbrokinase· Helpedserrapeptase· Helpednatto· HelpedNAD+· Helpedniacin (flush)· Helpedketovore diet· Helpedlow histamine diet· Helpedmethylene blue· HelpedLDN· HelpedFLCCC protocol· HelpedCoQ10 - Active Ubiquinol· Helped · mainPQQ· Helpednicotine patches· HelpedIV of B12, Vitamin C, ALA and OAA· HelpedOAA· HelpedFisetin· Helped
Also tried
Their words about each treatment
- apolactoferrin · Helped
i’ve started 5 days ago but i feel improvements in my circulatory issues (tissue hypoxia, brain fog, burning skin)
In context ↗ - Lumbrokinase · Helped
i had good improvements since working on this aspect of LC, with Lumbrokinase and Apolactoferrin
In context ↗ - serrapeptase · Helped
Got rid of 24/7 headaches via anti inflammatory diet, natto/serra and apolactoferrin.
In context ↗ - NAD+ · Helped
Yes, a ton of supplements. Main thing was Cerebrolysin, CoQ10, NAD+
In context ↗ - NAC · Not said
I’m working on mitochondria dysnfunction (NAD+, NAC, B12, Benfothiamine, D3, Niacin)
In context ↗ - niacin (flush) · Helped
Also niacin (flush) i think helps me going throught the main phase of vascular inflammation.
In context ↗ - ketovore diet · Helped
Then i found that i have developed glucose intolerance even if i’m not diabetic. Started with ketovore diet, those symptoms disappeared
In context ↗ - low histamine diet · Helped
I’m on no sugar and anti histamine diet since 4 months. Lost 23kg, more physical energy, still zero mental stamina.
In context ↗ - methylene blue · Helped
yesterday i ate 100g of chocolate without reactions after 3 days of methylene blue (3 drops in the morning)
In context ↗ - LDN · Helped
Now it is better, after starting with LDN and Methylene Blue and obviously with a low histamine and low sugar diet
In context ↗ - FLCCC protocol · Helped
Some supplements of the protocol helped me for fatigue and neuropathy.
In context ↗ - Cerebrolysin IV · Helped a lot
I start to improve with nicotine patches and cerebro IV, from 1k steps a day to 15k in 3 months
In context ↗ - CoQ10 - Active Ubiquinol · Helped
Main cure for me is Cerebrolysin IV + many supplements, but the most important are CoQ10 + PQQ.
In context ↗ - nicotine patches · Helped
I am doing 5 days on - 2 days off. It gives me an energy boost.
In context ↗ - Lion's Mane · Not said
I've tried so many supplements / drugs: (Lion's Mane, CoQ10, Omega 3/6/9, Cerebrolysin, LDN, BPC-157, ARA-290, Lipoic Acid IV and other 40-50)
In context ↗ - Valsartan · Helped a lot
This is the recipe of the solution: ... - Valsartan 80mg / day
In context ↗ - Odorless garlic · Helped
This is the recipe of the solution: ... - Odorless garlic 3400mg / day
In context ↗ - IV of B12, Vitamin C, ALA and OAA · Helped
I'm addressing this issues with IV of B12, Vitamin C, ALA and OAA. I have made some progress in last 2 weeks
In context ↗ - Antihistamines · No change
For months i’ve tried anything without success. Antihistamines didn’t anything.
In context ↗ - neuronic · Helped
I’ve just started with this: https://neuronic.online some little improvements in brain fog since day 3.. we will see
In context ↗ - bornfree.life protocol · Helped
I’m following bornfree.life protocol for chronic illnesses, the liquid solution for sinuses burns like hell but it seems working
In context ↗ - Fisetin · Helped
Recently also on neuro issues by adding high doses of Fisetin (1500mg / day)
In context ↗ - low dose Diamox · Helped a lot
First 3 days i had bad tingling in my hands and feet, but after 24 hours my eyes, head and neck pain finally start to fade out and no more muscle weakness.
In context ↗
Approaches: Anticoagulants · Diet · 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 |
|---|---|---|---|
| 2022 | long COVID; bedridden for the first three monthsI was bedridden for the first 3 months of this hell.In context ↗ | Severe | |
| September 2022 | total hell: 24/7 migraines, weakness, tingling, burning, housebound/bedboundFrom September 2022 to February 2023 i was in total hell with 24/7 migraines, posts, weakness, tingling, burning, housebound / bedbound.In context ↗ | Severe | |
| February 2023 | self-experimenting with supplements; 15% to 50% in a monthI went from 15% to 50% in one monthIn context ↗ | Moderate | |
| May 2023 | plateau between 50% on bad days and 75%today i am in a plateau from 50% (on bad days) to 75%In context ↗ | Mild | |
| 2023-07-07 | nicotine patches and cerebrolysin IV; steps from 1k to 15kI start to improve with nicotine patches and cerebro IV, from 1k steps a day to 15k in 3 monthsIn context ↗ | Mild | Nicotine patches |
| 2023-07-28 | burning skin gone; 20,000 steps a day in the mountainsLast week i've done 20.000 steps per day in the mountain, two months ago my best was 1.500 steps.In context ↗ | Mild | Valsartan (Diovan) |
| 2023-09-01 | brain fog eased after high-dose fisetinRecently also on neuro issues by adding high doses of Fisetin (1500mg / day)In context ↗ | Mild | |
| 2023-10-21 | low-dose Diamox; stable 75%, able to work againNow i’m in a stable 75%, i can work and live my life again in a “soft” version.In context ↗ | Mild | |
| 2023-11-05 | head symptoms and brain fog remain the main issuesHead symptoms + brain fog are my main issues, very hard to make them better.In context ↗ | Mild |
Adverse events
- Acetazolamide (Diamox)“First 3 days i had bad tingling in my hands and feet” In context ↗ Side effects
- Born Free Protocol“the liquid solution for sinuses burns like hell but it seems working” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgia
Their words about their symptoms
- Brain fog
Head symptoms + brain fog are my main issues, very hard to make them better.
In context ↗ - POTS & dysautonomia
some fixed (dizziness, pots)
In context ↗ - Muscle weakness
no more muscle weakness
In context ↗ - Neuropathy & tingling
24/7 migraines, posts, weakness, tingling, burning
In context ↗ - Headaches & migraine
Got rid of 24/7 headaches via anti inflammatory diet, natto/serra and apolactoferrin.
In context ↗ - Pain & fibromyalgia
Huge improvements on physical energy and muscle pain gone
In context ↗ - Gut problems
Gut issues gone after 10 days, other symptoms slowly improves.
In context ↗ - Mast cell (MCAS) & allergies
10% if i eat something high in istamine during the day like 4-5 coffees and else
In context ↗ - Breathlessness
wake up in the middle of the night “without oxygen” feeling
In context ↗ - Anxiety & low mood
replaced by anger alternating with despair
In context ↗
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