Mostly housebound with ME/CFS, now much better with low-histamine diet and MCAS treatment
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
Treating these deficiencies has made no difference to my CFS/ME.
In context ↗ - At worst: Severe
I've gone from severe to now back to the mild end of moderate.
In context ↗ - Now: Much better
I've gone from severe to now back to the mild end of moderate. What helped was time and then finding an Integrative GP and Immunologist to treat my MCAS.
In context ↗
Read from 16 of their posts and comments; links to the 11 this page draws on
Summary
An Australian with ME/CFS, POTS, MCAS and fibromyalgia, they were mild-moderate until COVID in October 2022 took them to moderate-severe, and they were still declining a year later. By August 2024 resting alone had improved them, though by November 2024 they were at the severe end of moderate and mostly housebound. From 2025 a low-histamine diet and mast-cell stabilisers helped, and an integrative GP and immunologist treating their MCAS helped further. By December 2025 they were back to the mild end of moderate.
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What they tried
What they credit
Also tried
Their words about each treatment
- medication for sleep · No change
sleeping is abysmal even with medication on board
In context ↗ - iron tablets and iron infusions · No change
I’ve had all of these corrected including with iron infusions and regular B12 shots. It doesn’t produce noticeable changes.
In context ↗ - Vitamin D · No change
I do have a B12 and Vitamin D deficiency but both are long standing. ... Treating these deficiencies has made no difference to my CFS/ME.
In context ↗ - surgery · Worse
By day 2 for approximately 2-3 days I had so much trouble with mobility. I was completely stiff and sore.
In context ↗ - resting · Helped
Surprisingly I have improved but there was nothing beyond resting that contributed to that.
In context ↗ - POTS meds · Helped
I did until my POTS meds were dosed correctly.
In context ↗ - antihistamines · No change
I haven’t noticed any difference since starting antihistamines.
In context ↗ - mast-cell stabilisers · Helped
I’m now on a low histamine diet and mast-cell stabilisers and have improved.
In context ↗ - time · Helped a lot
What helped was time and then finding an Integrative GP and Immunologist to treat my MCAS.
In context ↗
Approaches: Antihistamines & MCAS · Diet · Radical rest
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | ME/CFS symptoms began years before diagnosisI have been symptomatic for much longer than my official diagnosis - it was only when I tipped into moderate that I was diagnosedIn context ↗ | Mild | |
| October 2022 | COVID infection dropped baseline from mild-moderate to moderate-severeIt’s been almost a year post Covid infection which took me from mild/moderate to moderate/severe.In context ↗ | Severe | |
| 2023-10-22 | health continually worsening, overwhelmed, sleeping badlyThe issues continue to pile up and my health is continually getting worse.In context ↗ | Severe | |
| 2024-08-12 | improved on rest alone, could do self-care and short choresSurprisingly I have improved but there was nothing beyond resting that contributed to that.In context ↗ | Moderate | Radical rest |
| 2025-04-13 | low histamine diet and mast-cell stabilisers for MCASI’m now on a low histamine diet and mast-cell stabilisers and have improved.In context ↗ | Moderate | Low-histamine diet |
| 2025-12-11 | back to the mild end of moderate after time and MCAS treatmentI’ve gone from severe to now back to the mild end of moderate.In context ↗ | Moderate | Time and spontaneous remission |
Adverse events
- “By day 2 for approximately 2-3 days I had so much trouble with mobility. I was completely stiff and sore. I had to have assistance to move and then relied on a walker to get myself to the bathroom. This was a completely new reaction.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
My POTS is now well managed but I have ongoing fatigue, inability to exert and PEM amongst other symptoms.
In context ↗ - POTS & dysautonomia
I did a Tilt Table Test to confirm POTS as well.
In context ↗ - Mast cell (MCAS) & allergies
I have MCAS and it turns out that dust mites are one of my main triggers.
In context ↗ - Sleep problems
sleeping is abysmal even with medication on board
In context ↗ - Headaches & migraine
I did until my POTS meds were dosed correctly.
In context ↗ - Gut problems
eating due to gastroparesis
In context ↗ - Pain & fibromyalgia
the history of the symptoms of the current complaint (CFS and Fibro)
In context ↗ - Muscle weakness
I was completely stiff and sore. I had to have assistance to move and then relied on a walker to get myself to the bathroom.
In context ↗ - Anxiety & low mood
This is causing me a tremendous amount of grief, anger, depression, overwhelm and anxiety.
In context ↗
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