Largely bedbound with ME/CFS at 1/10 function, much better at 4/10 with IVIG and Ilaris
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 10 years
- Last post
- Apr 2023
In their words
- Condition: ME/CFS
I have mecfs and pots
In context ↗ - At worst: Very severe
I’m at about 30% function up from about 5%.
In context ↗ - Now: Much better
I’m a 4/10 which is a huge improvement from 1/10
In context ↗ - Began after: another virus
I got a severe flu in July of 2013 and it never went away.
In context ↗
Read from 17 of their posts and comments; links to the 14 this page draws on
Summary
A severe flu in July 2013 left them with ME/CFS; for years they were at about 1/10 of normal function, largely bedbound. IVIG every three weeks with saline, monthly Ilaris injections and POTS medication raised them to roughly 4/10 (30-40% function). They still had severe PEM and pain and paced carefully, and a December 2022 COVID infection set them back until they returned to baseline about a month later.
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What they tried
What they credit
Also tried
Their words about each treatment
- Liquid IV · Helped
the liquid iv helps my pots a lot when I drink one upon waking and one before bed
In context ↗ - pacing · Helped
I definitely do pacing, I always scout any activity for places for me to sit
In context ↗ - ivig · Helped a lot
I’ve come a long way from the early years (been sick a decade or so) thanks to ivig and Ilaris.
In context ↗ - Ilaris · Helped a lot
I do an Ilaris shot monthly
In context ↗ - northera · Helped a lot
the northera was really a game changer for me. I used to blackout from low bp and I don’t anymore
In context ↗ - corlanor · Helped
I take corlanor and coreg as my beta blockers. I need both to get my heart rate down.
In context ↗ - coreg · Helped
I needed coreg as well, then taking both seemed to help the heart rate come down
In context ↗ - flexiril (cyclobenzaprine) · Helped
I take 10mg up to 3 times a day. It helps lower my extreme pain during pem.
In context ↗ - nsaids · Not said
I take flexiril, nsaids and Tylenol for pain
In context ↗ - mushroom capsules · Not said
along with my mushroom capsules
In context ↗ - magnesium · Not said
many other supplements (2 mushroom, magnesium, etc.)
In context ↗ - pushing myself through activity · Worse
I push myself and I do crash afterwards
In context ↗ - mestinon · No change
I tried mestinon but I didn’t notice much
In context ↗ - PEA · Helped
I do notice a decrease in pain, it is not super significant but I’ll take a lowering on the pain scale
In context ↗ - antibiotics · Helped
It was actinomyces, a rare infection so I got antibiotics for a year.
In context ↗ - lung biopsy surgery · Not said
I had to have a lung biopsy surgery of the nodules to diagnose it
In context ↗ - paxlovid · Not said
I may have started my paxlovid too late which might explain why I had a rougher time
In context ↗ - valcyte · No change
I tried valcyte and it didn’t work for me
In context ↗
Approaches: Biologics & antibodies
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| July 2013 | severe flu, never recovered; early years at about 1/10 functionI got a severe flu in July of 2013 and it never went away.In context ↗ | |
| 2022 | risen to about 30% function, later plateaued at 30-40%I’m at about 30% function up from about 5%.In context ↗ | IVIG / subcutaneous Ig |
| December 2022 | COVID infection, back to baseline after about a monthCovid was awful for me, but I returned to my baseline after about a month.In context ↗ | |
| April 2023 | holding at a 4/10 baseline with severe PEM and pain stillI’m a 4/10 which is a huge improvement from 1/10 but I still have severe pem, pain and various other symptoms.In context ↗ |
Adverse events
- Mestinon / pyridostigmine“I tried mestinon but I didn’t notice much and going off of it made me super ill” In context ↗ Withdrawal problems
- “some of the meds have had side effects which worsened my mecfs” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still have severe pem, pain and various other symptoms.
In context ↗ - Pain & fibromyalgia
it is the only way I can get even the tiniest amounts of relief from severe pain all over my body
In context ↗ - POTS & dysautonomia
I have mecfs and pots
In context ↗ - Sleep problems
I sleep a lot around the clock though.
In context ↗ - Heart symptoms & palpitations
I need both to get my heart rate down.
In context ↗ - Temperature regulation
Sheex for sweats while sleeping
In context ↗
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