ME/CFS
Moderate → no benefitIll for 22 years
ME/CFS after Lyme, walking collapsed, no improvement with sleep apnoea treatment or Provigil
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 22 years
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
Nurse practitioner at Mt Sinai's CoRE Clinic confirmed I meet the diagnostic criteria last month but only after I suggested it.
In context ↗ - At worst: Moderate
I suddenly couldn't walk correctly, just a weak shuffle. Even leaving the hospital with the baby, my husband had to push me in a wheelchair.
In context ↗ - Now: No benefit
I have not gotten better.
In context ↗ - Began after: a bacterial or tick-borne infection
About 22 years ago, I was treated for Lyme Disease with two separate rounds of antibiotics.
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Prairie 93786 dates her fatigue to Lyme disease at age 18 in 2003; sleep apnoea treatment and Provigil did not help. Her ability to walk collapsed after her first child's birth in 2014, and she has declined since, working a full-time desk job while her spouse does the housework and she is paying off an electric wheelchair. She met ME/CFS criteria and was diagnosed with POTS and EDS in 2024-25, with possible MCAS, and has not improved.
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What they tried
Also tried
Their words about each treatment
- two separate rounds of antibiotics · Not said
I was treated for Lyme Disease with two separate rounds of antibiotics.
In context ↗ - sleep apnea treatment · No change
Sleep apnea was found about 16 years ago but treatment didn't seem to make much of a difference.
In context ↗ - Provigil or Nuvigil · No change
I was on either Provigil or Nuvigil at some point back then, maybe they tried one when the other didn't work - still I was falling asleep in college classes.
In context ↗ - exercise · Not said
I tried to exercise in drips and drabs of inspiration.
In context ↗ - Claritin · No change
I was taking Claritin and famotidine every day for post nasal and heartburn
In context ↗ - Visible · Worse
I used the free version for a while and I eventually felt burnt out logging data.
In context ↗ - Wegovy · Helped
I've done really well on it when it comes to losing the weight. I believe it helped reduce the frequency of my migraines as well.
In context ↗ - physical therapy (PT) · Worse
I attempted virtual PT with very little movement, mostly breathing, in the spring or summer
In context ↗
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 |
|---|---|---|
| 2003 | Lyme disease at age 18; exhaustion persisted after two rounds of antibioticsMy fatigue overall began when I had Lyme Disease in 2003In context ↗ | Mild |
| 2014 | Complicated birth of first child; could no longer walk correctlyThe instant I gave birth, everything changed. The birth was complicated.In context ↗ | Moderate |
| 2016 | Quit physical job for a desk job because she was barely movingI found a desk job and quit my physical job because I was barely moving a little over nine years agoIn context ↗ | Moderate |
| June 2025 | Collapsing without warning, electric wheelchair, unable to clean, shop alone or do laundrymy children watch me collapse to the ground without warningIn context ↗ | Moderate |
| October 2025 | Still working full time, slowly declining, no improvementI'm mild to moderate depending on what area of functioning is being measured.In context ↗ | Mild |
Adverse events
- Symptom-tracking apps and wearables (Visible)“I used the free version for a while and I eventually felt burnt out logging data.” In context ↗ Other
- Physical therapy / physiotherapy“the NP who ordered it had me stop because it was making me worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Gut problemsHeadaches & migraineMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
my obvious patterns of pushing myself too hard and getting worse actually had a name, PEM
In context ↗ - Sleep problems
if I haven't collapsed into an unplanned sleep after work
In context ↗ - Muscle weakness
I suddenly couldn't walk correctly, just a weak shuffle.
In context ↗ - POTS & dysautonomia
my children watch me collapse to the ground without warning
In context ↗ - Mast cell (MCAS) & allergies
I also have a presumptive MCAS diagnosis but it doesn't seem to be something that bothers me on a regular basis
In context ↗ - Headaches & migraine
I believe it helped reduce the frequency of my migraines as well
In context ↗ - Gut problems
I was taking Claritin and famotidine every day for post nasal and heartburn
In context ↗