ME/CFS crashes eased by heart-rate tracking, then a lower baseline after a trial injection
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- At worst: Severe
I've been too sick to brush for over 2 years.
In context ↗ - Now: Relapsed
I declined pretty dramatically after my injection in February and am much worse now 6 months later.
In context ↗
Read from 20 of their posts and comments; links to the 16 this page draws on
Summary
Pond 57399, a man in his late 30s with ME/CFS, used a heart-rate monitor and the Visible app to spot silent heart-rate spikes and cut his unexplained crashes. He tried Equilibrant with inosine but could only tolerate half a tablet of Equilibrant. An injection in a sipavibart trial in February 2026 (possibly placebo) was followed by months of decline to a new, lower baseline. Low-dose naltrexone did nothing over 18 months, while topical magnesium oil eased his muscle pain.
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What they tried
What they credit
Also tried
Their words about each treatment
- Visible app · Helped
Modifying my routine based on heart rate made a big difference in setting off those random PEM episodes. ... haven't had a bad PEM crash since!
- Equilibrant · Worse
I'm having trouble tolerating the dose so I had to reduce it substantially and go extremely slow with lots of breaks. ... was concerned that it was really hurting my baseline.
In context ↗ - Inosine · Worse
I basically feel like i'm coming down with the flu whenever I'm on it (a sign it's working I guess) but was concerned that it was really hurting my baseline.
In context ↗ - digestive enzyme pill · Helped
You might try taking a digestive enzyme pill with your meal, they help me!
In context ↗ - Adderall · Worse
it helped the ADHD symptoms but I felt like I basically burned through an entire day's worth of energy in an hour of Adderall fueled focus
In context ↗ - oral probiotic chew tablets · Helped
I've used oral probiotic chew tablets to increase the good bacteria and prevent the cavity causing ones from taking hold. ... So far it's working. I had my first cleaning in 3 years & dentist confirmed zero cavities.
In context ↗ - AutoBrush · Not said
It's okay but I don't really like it that much. ... it makes my gums bleed because of the shape of the brushhead
In context ↗ - topical magnesium oil · Helped a lot
Topical magnesium oil really helps with the constant burning lactic acid like feeling in my muscles. It actually went away entirely for over a year after just a week or two of daily applications.
In context ↗ - oral magnesium l-threonate · No change
I'm about ready to stop taking my oral magnesium (magnesium l-threonate) because it hasn't helped at all.
In context ↗ - low dose lithium · Helped a lot
It was a game changer for my nervous system. Felt like I was able to relax for the first time in my life.
In context ↗ - LDN · No change
I (37M) have on LDN 4.5mg for 18 months and felt absolutely nothing the entire time. Stopped taking 2 months ago ... nope, no difference at all.
In context ↗ - sipavibart · Much worse
I declined pretty dramatically after my injection in February and am much worse now 6 months later.
In context ↗ - cognitive pacing · Helped
I've tried so many things but religious cognitive pacing is the only one that seems to help.
In context ↗ - non-alcoholic fluoride mouthwash · Helped
I also got a non-alcoholic fluoride mouthwash to further protect the teeth without hurting the good bacteria.
In context ↗
Approaches: Pacing
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. 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 |
|---|---|---|---|
| — | ill with ME/CFS, crashing oftenwhy I was crashing so oftenIn context ↗ | Not stated | |
| 2024 | started heart-rate pacing with the Visible appModifying my routine based on heart rate made a big difference in setting off those random PEM episodes.In context ↗ | Moderate | Symptom-tracking apps and wearables (Visible) |
| 2025 | got worse mentally after regaining some capacityI also got much worse mentally immediately after recovering some capacity last year.In context ↗ | Moderate | |
| February 2026 | declined after sipavibart trial injection to a new lower baselineI continued to decline for the next 4 months until stabilizing at a new lower baseline.In context ↗ | Severe | Sipavibart (Kavigale) |
| 2026-10 | still too sick to brush teeth dailyI've been too sick to brush for over 2 years.In context ↗ | Severe |
Adverse events
- Oxymatrine / Equilibrant“I'm having trouble tolerating the dose so I had to reduce it substantially and go extremely slow with lots of breaks ... I basically feel like i'm coming down with the flu whenever I'm on it” In context ↗ Side effects
- Amphetamine salts (Adderall)“I felt like I basically burned through an entire day's worth of energy in an hour of Adderall fueled focus.” In context ↗ Made symptoms worse
- Sipavibart (Kavigale)“I declined pretty dramatically after my injection in February and am much worse now 6 months later ... I continued to decline for the next 4 months until stabilizing at a new lower baseline.” Made symptoms worse
- Sipavibart (Kavigale)“Immediate worsening after injection (within hours). Experienced intense body aches & difficulty sleeping due to aches, sick fluey feeling, headache & loss of appetite for about a week.” In context ↗ Side effects
- “I was starting to get liver damage from supplements. Fortunately routine lab work caught it before it caused permanent problems.” In context ↗ Liver or kidney problems
- “the U-shape made my gums bleed where it rubbed from the back and forth motion” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Mine are typically delayed by 24-36 hours which makes it hard to pinpoint the trigger.
In context ↗ - POTS & dysautonomia
Part of it was me developing POTS without realizing.
In context ↗ - Pain & fibromyalgia
constant burning lactic acid like feeling in my muscles
In context ↗ - Anxiety & low mood
I also got much worse mentally immediately after recovering some capacity last year.
In context ↗
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