ME/CFS that once needed half the day in bed, now much better with nattokinase and pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Jul 2024
In their words
- Condition: ME/CFS
I have cfs for years
In context ↗ - At worst: Moderate
I went from needing to be in bed for half a day to being able to be vertical throughout the day.
In context ↗ - Now: Much better
I went from needing to be in bed for half a day to being able to be vertical throughout the day. I can also tolerate some very mild exercise.
In context ↗
Read from 14 of their posts and comments; links to the 11 this page draws on
Summary
Kite 96362 had CFS for years and once needed to be in bed half of each day. Nattokinase, raised to 5,000 FU daily through week-long Herx flares, was the best medicine they had taken; by mid-2023 their PEM was almost gone. They credited valacyclovir, fluvoxamine, pacing, meditation, a Mediterranean diet, multivitamins and magnesium with being upright all day and tolerating very mild exercise. Cumin helped crashes, then stopped working.
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What they tried
What they credit
Also tried
Their words about each treatment
- nattokinase (natto) · Helped a lot
Natto was by far the best medicine I have ever taken to treat my CFS. PEM is almost gone.
In context ↗ - ground cumin · Helped
I took it for a while and it was really helpful initially, but with time it stopped working.
In context ↗ - ivermectin · Helped
I tried to take ivermectin when I didn't have a cold to treat my cfs directly and it did nothing, but it prevents post-viral flare up every time.
In context ↗ - NAC · Helped
I had about 1g of NAC half an hour before drinking (it eliminates hangover)
In context ↗ - alcohol (wine) · Helped
My symptoms used to go away the next day after drinking. ... Some time ago alcohol stoped having this effect
In context ↗ - fluvoxamine · Helped
I've been taking fluvoxamine for years, and it still works.
In context ↗ - valacyclovir · Helped a lot
I took valacyclovir for a couple of months, felt a significant improvement, that stuck with me long term.
In context ↗ - skullcap · Helped
i have great experience with skullcap. Better sleep, more energy, less brainfog.
In context ↗ - pacing · Helped
All of that because of valacyclovir, fluvoxamine, pacing,meditation, meditteranian diet, multivitamine, magnesium.
In context ↗
Approaches: SSRIs · Anticoagulants · Antivirals · Mind-body practices · Pacing · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. 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 |
|---|---|---|---|
| onset | CFS for years; in bed half of each dayI have cfs for years. ... I went from needing to be in bed for half a day | Moderate | |
| 2023-06-09 | nattokinase escalated to 5,000 FU daily through Herx flares; PEM almost gonePEM is almost gone. Still not 100% healthy though.In context ↗ | Mild | Nattokinase |
| 2024-01-20 | alcohol stopped clearing their symptoms; symptoms now constantSome time ago alcohol stoped having this effect and now I have my symptoms all the time, no breaks.In context ↗ | Mild | |
| 2024-02-13 | up and vertical all day, tolerating very mild exerciseI went from needing to be in bed for half a day to being able to be vertical throughout the day. I can also tolerate some very mild exercise.In context ↗ | Mild | Valtrex / valacyclovir |
| 2024-07-11 | still crashing a few times a month; cumin used only during crashesRight now I only use it 2-4 times a month during crashesIn context ↗ | Mild |
Adverse events
- Nattokinase“I have major Herx reaction with natto. I always increase the dose only by 500 fu,and I have a significant flare up of symptoms every time. It's exhausting. The flare up lasts about a week” In context ↗ Herx / die-off reaction
- Nattokinase“Before I got to 4000 fu I felt worse,not better. Once i started taking 4000 I got worse again for like 3 days ... Then I started taking 4500 fu, I got worse again for about 3 days” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Right now I only use it 2-4 times a month during crashes
In context ↗ - Brain fog
Better sleep, more energy, less brainfog.
In context ↗
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