Severe ME/CFS, no less ill; acceptance made them happier, trazodone added sleep
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Jun 2023
In their words
- Condition: ME/CFS
I was around your child’s age when my ME/CFS was misdiagnosed as Lyme with an Igenex test.
In context ↗ - At worst: Severe
for severe patients (like me), this belief can be harmful
In context ↗ - Now: No benefit
accepting that [barring scientific advancement] I would likely never regain my health
In context ↗
Summary
Sparrow 52120 described living with severe CFS; it was misdiagnosed as Lyme when they were a child, and the multi-year course of harsh medication that followed left permanent gut damage needing lifelong treatment. By 2017 they had stopped fighting the illness and said accepting it made them much happier, though no less ill. Trazodone 50 mg in 2020 added an hour or two of sleep.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- medication to treat my “Lyme” · Much worse
a multi year course of unnecessary and harsh medication ... has done permanent damage to my gut health
In context ↗ - trazadone · Helped
I take trazadone, 50MG just before sleep ... the extra sleep has been a relief.
In context ↗ - meds for that damage · Not said
taking meds for that damage for the rest of my life
In context ↗
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. 4 steps say too little to place on the scale and are only in the table. The line stops at their last step that can be placed; how they are now is in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | ME/CFS began around age 13; later misdiagnosed as LymeI was around your child’s age when my ME/CFS was misdiagnosed as Lyme with an Igenex test.In context ↗ | Not stated | |
| — | multi-year harsh Lyme medication; permanent gut damageWhat followed was a multi year course of unnecessary and harsh medication to treat my “Lyme” that has done permanent damage to my gut health.In context ↗ | Not stated | |
| 2017-06-26 | severely ill, unable to work, socialise or pursue activityLiving with severe CFS is an exercise in creating a life worth living without the things people normally derive meaning fromIn context ↗ | Severe | |
| 2017-06-26 | accepted the illness and focused on living despite limits; much happieraccepting that [barring scientific advancement] I would likely never regain my health made me much happierIn context ↗ | Severe | |
| 2020-07-04 | trazodone added another hour or two of sleepI still wake up after 4-5 hours, but I’m now usually able to fall asleep again.In context ↗ | Not stated | Trazodone (Desyrel) |
| 2023-06-05 | still has ME/CFS; lifelong medication for gut damageI’ll be taking meds for that damage for the rest of my lifeIn context ↗ | Not stated |
Adverse events
- Lyme / co-infection protocols“a multi year course of unnecessary and harsh medication to treat my “Lyme” that has done permanent damage to my gut health.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I still wake up after 4-5 hours, but I’m now usually able to fall asleep again.
In context ↗ - Gut problems
that has done permanent damage to my gut health
In context ↗ - Anxiety & low mood
which did nothing except make me severely depressed
In context ↗