Mild ME/CFS with weekly flu-like symptoms, much better lactose-free
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 9 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I've been plagued by what could be defined as a light form of CFS/ME for 7 years now.
In context ↗ - At worst: Mild
I can work, function, go for walks be with people. I mostly had to give up my physical activity/sport. Anything else has been manageable.
In context ↗ - Now: Much better
Since this January I have been avoiding dairy products and I've been feeling much better: the symptoms I'd get 2-3 times a week for half a day or so now happen only once every two weeks.
In context ↗ - Began after: another virus
I catch the flu of a lifetime, with fever (VERY unusual for me, I usually get a very runny nose and the other symptoms, but not high fever), runny nose, shivers, body aches, and white spots/caseums on my tonsils.
Read from 16 of their posts and comments; links to the 6 this page draws on
Summary
A UK user fell ill in January 2017, aged 33, after a bad flu with tonsil complications and was left with mild ME/CFS that ended their climbing and brought weekly flu-like symptoms for nine years. In December 2021 brief stationary biking and light weights triggered their worst relapse, two weeks nearly bedridden. Going lactose-free in January 2026 cleared most symptoms, now occurring about once every two weeks.
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What they tried
What they credit
Also tried
Their words about each treatment
- carnitine · No change
he prescribes a cycle of carnitine intake and acyclovir once a week to "cope" ... The cure doesn't seem to change much.
In context ↗ - lymphatic drainage massage (Perrin-trained therapist) · Helped
I get some relief from lymphatic drainage massage from him ... lymphatic drainage massages that seem to help when I have relapses.
- probiotics (Actimel, L. Casei) · Worse
I have taken up probiotics of the normal, commercial type, by Actimel by Danone, L. Casei.
In context ↗ - pacing · Not said
had to learn to pace myself like most affect people
In context ↗ - lactose-free diet / avoiding dairy · Helped a lot
I've gone lactose-free and I feel a lot better
In context ↗ - sea swimming / thermal baths · Not said
I'm also living in a sunnier, warmer climate now and try to swim in the sea 2-3 times a week.
In context ↗
Approaches: Diet
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 |
|---|---|---|
| January 2017 | bad flu with tonsil complications; housebound two weeksCan't leave the house for a solid two weeks, which is unheard for me.In context ↗ | |
| December 2021 | worst relapse after 20 minutes on a stationary bike and light dumbbellsIt takes me two weeks of being nearly bed ridden to get out of it.In context ↗ | |
| late January 2026 | went lactose-free for 10 days and most symptoms disappearedI couldn't remember so many days in a row with absolutely no symptoms.In context ↗ | Elimination diets (other) |
| 2026-09-12 | still avoiding lactose; symptoms about once every two weeksThis year has been very good for me as I found out lactose seems to trigger most of my symptomsIn context ↗ | Elimination diets (other) |
Adverse events
- Probiotics and fermented foods“this quite constant flare up of lymph nodes that seems to align with me starting the probiotics” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
after 2 months of recovery from that flu I was unable to exercise (especially anaerobic exercise) without feeling genuinely ill in the 24 to 72 hours after
In context ↗ - Flu-like symptoms
generic "sore throat" sensation, possibly the most frequent symptom
In context ↗ - Pain & fibromyalgia
slight pain in the joints, especially elbows and knees
In context ↗ - Temperature regulation
being very sensitive to changes in temperature
In context ↗ - Gut problems
occasional feeling of nausea
In context ↗ - Sleep problems
sleep is not amazing unless I'm really strict with the routine
In context ↗ - Muscle weakness
I'd be feverish, with swollen lymph nodes, body aches, nausea and overall weakness
In context ↗
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