ME/CFS
Very severe → much betterIll 2 years before improving or writingNeeds ongoing treatment
Bedbound with ME/CFS, now much better with pacing and low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 2 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
My mecfs is still present, but treating MCAS did help my baseline significantly.
In context ↗ - At worst: Very severe
In the last month or so I’ve experienced my first baseline lowering crash after resting my way from very severe to moderate over the last few years (now back to severe)
In context ↗ - Now: Much better
now I’m more like, “able to leave the house once or twice a week”/can’t work again yet but can manage cooking/cleaning/laundry/groceries adequately well
In context ↗ - Began after: nothing they could name
Symptoms onset years ago but nosedived Sept 2020
Read from 45 of their posts and comments; links to the 20 this page draws on
Summary
A Chicago woman with POTS and ME/CFS became bedbound and totally housebound after a nosedive in September 2020. Pacing, a low-histamine diet with DAO and Zyrtec, and 0.1 mg low-dose naltrexone lifted her to leaving the house once or twice a week and managing her own cooking and cleaning, though a baseline-lowering crash in 2024 set her back to severe. She still cannot work and still has PEM, brain fog and MCAS symptoms.
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What they tried
What they credit
Pacing and rest· Helped a lotlow histamine diet· Helped a lot · mainLDN (low-dose naltrexone)· Helped a lot · mainmostly keto / low-carb diet with gluten, dairy and soy cut out· Helpedmostly keto / low-carb diet with gluten, dairy and soy cut out· Helpedmostly keto / low-carb diet with gluten, dairy and soy cut out· Helpedadding in daily activities slowly instead of exercising· HelpedDAO (Seeking Health, then NaturDAO)· HelpedZyrtec (cetirizine)· Helpedhydroxyzine· Helpedmoving out of a polleny/dusty/pet-hairy place· HelpedWellbutrin (bupropion)· Helped
Also tried
cannabis (indica weed / 2.5 mg THC edibles)· HelpedPerrin technique· Helpedshower chair· Helpedsnack before bed· HelpedTachyMon app and Visible armband· Helpedsertraline· HelpedHPA Adapt (Integrative Therapeutics)· HelpedPepcid· WorseNAD+ (nicotinamide riboside, Niagen / Tru Niagen)· WorseKate Farms and Sperri nutrition drinks· WorseL-theanine· Not saidwater and electrolytes· Not saidacupuncture· Not saidvitamin C· Not said
Their words about each treatment
- mostly keto / low-carb diet with gluten, dairy and soy cut out · Helped
I’ve recently gone to a ~mostly~ keto diet too, and it’s amazing how quickly I felt the difference.
In context ↗ - Pacing and rest · Helped a lot
Resting/pacing above anything else. ... I’ve experienced my first baseline lowering crash after resting my way from very severe to moderate over the last few years
- adding in daily activities slowly instead of exercising · Helped
the adding in daily activities slowly over explicitly exercising thing, I’ve found that to be a more sustainable method of increasing my activity
In context ↗ - low histamine diet · Helped a lot
I learned a couple years ago (summer 2022) that I had a histamine intolerance, so that’s been the biggest difference in my diet, and it has been fundamental to the improvements in my fatigue
In context ↗ - DAO (Seeking Health, then NaturDAO) · Helped
then starting DAO (at first Seeking Health brand, and then NaturDAO, and I’m a NaturDAO til I die person now
In context ↗ - Zyrtec (cetirizine) · Helped
then started Zyrtec 1x daily, then did Zyrtec 2x daily
In context ↗ - hydroxyzine · Helped
I really, really credit 12.5mg hydroxyzine nightly being the “final straw” that took my MCAS symptoms to more episodic than chronic
In context ↗ - Pepcid · Worse
They also recommended Pepcid but it didn’t agree with me.
In context ↗ - LDN (low-dose naltrexone) · Helped a lot
It’s been a lifesaverrrrr for me ... It’s been a game changer for my PEM, far & away more than anything else.
- NAD+ (nicotinamide riboside, Niagen / Tru Niagen) · Worse
Agh I’m so disappointed that my body didn’t handle NAD+. I ended up w like nonstop headache & migraine. (Niagen brand NR 150mg once a day)
In context ↗ - L-theanine · Not said
I listen to an audiobook or scroll on tiktok or reddit laying down and take an l-theanine
In context ↗ - water and electrolytes · Not said
load up on water/electrolytes beforehand
In context ↗ - cannabis (indica weed / 2.5 mg THC edibles) · Helped
I do 2.5mg of an edible to help me shower or meal prep ... it (usually) works in my favor
In context ↗ - Perrin technique · Helped
Yess Perrin technique!
In context ↗ - shower chair · Helped
defffff get a shower chair if you don’t already use one, lifesaver for energy conservation & dizziness
In context ↗ - snack before bed · Helped
I’ve been experimenting with having a little snack right before bed and it’s helped me stay asleep in the early morning.
In context ↗ - Kate Farms and Sperri nutrition drinks · Worse
I just tried Kate Farms recently and it upset my stomach, switching to Sperri for the next delivery now
In context ↗ - acupuncture · Not said
I just recently stopped at the advisement of my POTS doctor & acupuncturist
In context ↗ - moving out of a polleny/dusty/pet-hairy place · Helped
I also moved out of a super polleny/dusty/pet hairy place at the same time, so I was never fully sure how much each one contributed to the betterment of my fatigue.
In context ↗ - vitamin C · Not said
I was already on Zyrtec 2x daily, DAO, 3g vitamin C, and a low histamine diet
In context ↗ - TachyMon app and Visible armband · Helped
I use the TachyMon app for Apple Watch and a Visible armband, and I swear by both for different purposes
In context ↗ - Wellbutrin (bupropion) · Helped
Wellbutrin has definitely helped my baseline energy!
In context ↗ - sertraline · Helped
sertraline totallyyyy helps the anxiety/mood instability I get during PMS/ovulation
In context ↗ - HPA Adapt (Integrative Therapeutics) · Helped
HPA Adapt by Integrative Therapeutics reallyyyy helped me with the mood instability / drastic dips in energy / migraines I was experiencing during PMS & ovulation
In context ↗
Approaches: H1 antihistamines · Antihistamines & MCAS · Diet · Mould avoidance · Other antidepressants · Pacing · Physiotherapy and rehab
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 | After |
|---|---|---|---|
| September 2020 | symptoms nosedived; bedbound and totally housebound, couldn't cook or cleanSymptoms onset years ago but nosedived Sept 2020 ... I was pretty bedbound & totally housebound/couldn’t do any cooking/cleaning before I started MCAS management & LDN | Very severe | |
| 2022 | started low-histamine diet, then DAO, then Zyrtec for histamine intolerancea slow cascade over the course of 6 months in 2022 of starting a low histamine diet, then starting DAOIn context ↗ | Severe | Low-histamine diet |
| August 2023 | started low-dose naltrexone and moved out of a polleny, pet-hairy home; later working 12 hours a weekLDN I started through AgelessRX in 2023 and only do 0.1mg daily ... And it gave me a further like 10-20% boost in my mecfsIn context ↗ | Moderate | Low-dose naltrexone |
| May 2024 | first baseline-lowering crash, back down to severeI’ve experienced my first baseline lowering crash after resting my way from very severe to moderate over the last few years (now back to severe)In context ↗ | Severe | |
| August 2025 | MCAS treated with antihistamines, DAO and low-histamine diet; leaves the house once or twice a week, cannot worknow I’m more like, “able to leave the house once or twice a week”/can’t work again yet but can manage cooking/cleaning/laundry/groceries adequately well.In context ↗ | Moderate |
Adverse events
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“I ended up w like nonstop headache & migraine. (Niagen brand NR 150mg once a day)” In context ↗ Side effects
- Low-dose naltrexone“I tried bumping up to 0.25mg for a while in fall 2023 but got migrainey/wirey from it ... the couple times I’ve tried going higher, like 0.25mg, I’ve had negative side effects that outweigh the positive” Side effects
- Low-dose naltrexone“I was experiencing new/chronic jawline hormonal acne, pretty regular styes, and worsening of symptoms around ovulation & menstruation” In context ↗ Side effects
- Low-dose naltrexone“I’m on Day 5 of no LDN and I just feel a constant “brain inflammation” feeling, (as well as depression & wired limbs and other symptoms)” In context ↗ Withdrawal problems
- Famotidine (Pepcid)“They also recommended Pepcid but it didn’t agree with me.” In context ↗ Side effects
- “I just tried Kate Farms recently and it upset my stomach, switching to Sperri for the next delivery now” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
I definitely still have PEM and chronic fatigue
In context ↗ - Brain fog
the brain fog is wilding out
In context ↗ - POTS & dysautonomia
I (26F) have POTS, confirmed & diagnosed
In context ↗ - Mast cell (MCAS) & allergies
I obviously still have MCAS symptoms regularly
In context ↗ - Headaches & migraine
I ended up w like nonstop headache & migraine
In context ↗ - Anxiety & low mood
sertraline totallyyyy helps the anxiety/mood instability I get during PMS/ovulation
In context ↗ - Gut problems
I just tried Kate Farms recently and it upset my stomach
In context ↗
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