Who Me?, replying in “Long Treatment Regimen Reaps Dividends for Irene”
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 20 years
- Published
- Aug 2016
In their words
- Condition: ME/CFS
Beat Candida Diet Beats Christine's 10 Year Bout with ME/CFS
- At worst: Moderate
after 20 year, the last 5 or so being housebound
In context ↗ - Now: No benefit
I've been on a long time treatment regimen and I have had few results.
In context ↗
The story comes from their 10 posts in 4 threads
Summary
They were ill for about 20 years, housebound for roughly the last five, and called themselves treatment resistant. On Lerner's protocol, Valtrex made them ill and Valcyte did nothing, and their long-term regimen gave few results. Even if Ampligen or rituximab were available, they said they could not pay or had no one to prescribe them, and did not expect to recover.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- active ingredient in Chlortrimeton · Not said
I use the active ingredient in Chlortrimeton as well as many that strike said.
In context ↗ - benedryl · Helped
I swore by benedryl but it started to cause tachycardia.
In context ↗ - Dramamine · Helped
I also found Dramamine worked great for many years.
In context ↗ - doxylamine · Not said
Try doxylamine and the active ingredient in chlortrimeton. ... I alternate those.
In context ↗ - benzo · Helped
The only thing that initiates sleep for me is a benzo.
In context ↗ - baicalin · Helped
I've been having good luck with baicalin and oleamide.
In context ↗ - candida diet · Not said
This is the candida diet I have used
In context ↗ - enemas · Not said
the wonderful world of enemas
In context ↗ - Thorne SF 722 · Helped
I swear by Thorne SF 722 when doing it.
In context ↗ - valtex · Worse
valtex made me ill
In context ↗ - Valcyte · No change
Valcyte did nothing
In context ↗ - lerners protocol · Not said
As for lerners protocol
In context ↗
Approaches: Antihistamines & MCAS · Other drugs and medicines · Supplements
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. The chart starts 15 years after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| about 20 years before 2016 | Fell ill with ME/CFSWhen I first go sick Ampligen was the greatest thing on the horizon.In context ↗ | Not stated |
| about 2011 | Became housebound, struggling with basic tasksafter 20 year, the last 5 or so being houseboundIn context ↗ | Moderate |
| 2016-08-12 | Still housebound after a long treatment regimen with few resultsI've been on a long time treatment regimen and I have had few results.In context ↗ | Moderate |
Adverse events
- Diphenhydramine (Benadryl)“it started to cause tachycardia” In context ↗ Heart rhythm problems
- Valtrex / valacyclovir“valtex made me ill” In context ↗ Side effects
- Elimination diets (other)“with my IBS-c I was miserable without fiber” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Sleep problems
epic insomnia like me
In context ↗ - Heart symptoms & palpitations
it started to cause tachycardia
In context ↗ - Gut problems
with my IBS-c I was miserable without fiber
In context ↗