ME/CFS
Severe → somewhat betterIll 4 years before improving or writingNeeds ongoing treatment
Housebound, sometimes bedbound with ME/CFS; somewhat better with pacing and MCAS regimen
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
I have CFS along with POTS, MCAS, and several other things
In context ↗ - At worst: Severe
In the beginning I was housebound (bed bound some days), could barely hold a conversation because of the brain fog
In context ↗ - Now: Somewhat better
Now, if it’s a good day I can do about 35% of what a human with “typical energy” can do.
In context ↗ - Began after: injury or surgery
But things got way worse after a horseback riding accident in 2020. I broke my wrist, was hospitalized for a couple of days for surgery, and within a week I started developing a whole host of symptoms
Read from 14 of their posts and comments; links to the 3 this page draws on
Summary
Harbor 40562 fell ill in 2020 after a horseback riding accident and wrist surgery, becoming housebound and sometimes bedbound with brain fog, POTS, MCAS and SIBO. After four years with little medical support aside from PT and speech therapy, a 2024 POTS diagnosis led to other diagnoses; treatment included pacing, an MCAS regimen, low-histamine diet and thyroid and antiviral drugs, and they improved from severe to moderate, about 35% of normal energy on good days. A 0.01 LDN trial made them bedbound again.
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What they tried
What they credit
Also tried
NP Thyroid· HelpedB12 and B complex· HelpedB12 and B complex· HelpedPepcid· HelpedQuercetin· HelpedMagnesium glycinate· HelpedProbiotic· HelpedValacyclovir· HelpedGastrocrom· HelpedCurable app· HelpedDNRS· HelpedGupta Program· HelpedCBT for Insomnia· HelpedNidra Vidya meditations· Helpedgraded activity progression· HelpedChiropractic· Helpedvisceral massage· Helpedhydroxyzine· WorseLDN· Much worseLactoferrin· Not saidElectrolytes and compression· Not saidElectrolytes and compression· Not saidNasalcrom· Not saidZinc· Not saidVitamin C· Not saidClaritin· Not saidD3· Not saidCoQ10· Not saidOmega 3s· Not saidMultiVitamin· Not saidSingulair· Not saidClobetesol· Not saidTylenol· Not saidExcedrine· Not said5HTP· Not saidz-pack· Not saidhormone therapy· Not saidSpeech therapy· Not saidPelvic Floor Therapy· Not said
Their words about each treatment
- LDN · Much worse
it was too sedating even at .01 (made me bed bound again and I'm having to claw my way back to civilization, again)
In context ↗ - NP Thyroid · Helped
I’m on the low end of normal thyroid. Prescribed by CFS doctor. Makes it significantly easier to wake up.
In context ↗ - Lactoferrin · Not said
Lactoferrin 250mg – for Low Ferritin.
In context ↗ - Electrolytes and compression · Not said
Electrolytes: first thing when I wake up and throughout the day.
In context ↗ - Nasalcrom · Not said
still trying to figure out if this is helpful for MCAS
In context ↗ - B12 and B complex · Helped
Helped significantly with shortness of breath.
In context ↗ - Zinc · Not said
Zinc 15mg – for frequent infections
In context ↗ - Vitamin C · Not said
Vitamin C 1,000mg – for frequent infections
In context ↗ - Claritin · Not said
Claritin 10mg for MCAS
In context ↗ - Pepcid · Helped
Pepcid 10mg for MCAS: has helped significantly with flushing
In context ↗ - Quercetin · Helped
has helped significantly for extreme fatigue caused by weather changes
In context ↗ - D3 · Not said
D3 alternate every other day 125/250mcg - w/ fat
In context ↗ - CoQ10 · Not said
CoQ10 100mg - w/ fat Can be stimulating - monitor carefully!
In context ↗ - Omega 3s · Not said
Omega 3s 1280mg - w/ fat
In context ↗ - Magnesium glycinate · Helped
Magnesium glycinate 240mg: helps with relaxation and regularity
In context ↗ - Probiotic · Helped
Probiotic: helps with regularity
In context ↗ - Valacyclovir · Helped
Valacyclovir 1gm: helps with EBV reactivation. Colds used to last 2-4 weeks. Now they are less severe and shorter.
In context ↗ - Singulair · Not said
Singulair 10mg for MCAS
In context ↗ - Gastrocrom · Helped
Has helped with hives, nightly stomach pain, soreness upon waking (tight fascia).
In context ↗ - Clobetesol · Not said
Clobetesol ointment for hives and psoriasos/eczema
In context ↗ - Tylenol · Not said
Tylenol for aches/pains/headaches
In context ↗ - Excedrine · Not said
Excedrine for stubborn headaches
In context ↗ - 5HTP · Not said
I took 5HTP because my serum serotonin was low. Once it reached the threshold my CFS doctor wanted, then I stopped.
In context ↗ - z-pack · Not said
My CFS doc also had me take a z-pack for two months because of lingering walking pneumonia and another infection he identified in bloodwork.
In context ↗ - hormone therapy · Not said
some of his treatments have not been necessary such as trying hormone therapy
In context ↗ - Curable app · Helped
the education segment about pain was eye opening and made me less fearful of pain
In context ↗ - DNRS · Helped
CBT portion helped with shifting mindset. I can’t think/meditate my way out of this illness, but shifting my mindset helped me with hopefulness.
In context ↗ - Gupta Program · Helped
Taught me a lot about meditation. I took what worked for me and left the rest.
In context ↗ - CBT for Insomnia · Helped
I only had to go three times before my sleep got sorted.
In context ↗ - Nidra Vidya meditations · Helped
Meditations help significantly with headaches and general overstimulation.
In context ↗ - Planning/pacing · Helped a lot
By using planning/pacing techniques I have clawed my way back to engaging with the world again. I take frequent breaks throughout the day whether I think I need them or not.
In context ↗ - graded activity progression · Helped
I went from all I could do in a day was folding towels to working my way to stretching, then recumbent bike, then walking outside, etc.
In context ↗ - Low Histamine Diet · Helped
the smoothie definitely helps me feel better
In context ↗ - Vestibular physical therapy · Helped a lot
Vestibular physical therapy that helped tremendously with dizziness and planning/pacing.
In context ↗ - Speech therapy · Not said
Speech therapist for brain fog, concentration and word finding
In context ↗ - Pelvic Floor Therapy · Not said
Pelvic Floor Therapist for Urine Loss and Pelvic/Hip instability
In context ↗ - Chiropractic · Helped
A husband and wife chiropractic team that have helped with sublaxations and visceral massage.
In context ↗ - visceral massage · Helped
visceral massage to loosen abdomen fascia, and MCAS treatment
In context ↗ - hydroxyzine · Worse
I couldn't do the hydroxyzine because it was so sedating
In context ↗
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 |
|---|---|---|---|
| 2020 | ME/CFS onset after horseback riding accident and wrist surgeryIn the beginning I was housebound (bed bound some days), could barely hold a conversation because of the brain fog, and couldn’t even watch tv because it was too stimulating – I could only listen to it.In context ↗ | Severe | |
| 2025 | bedbound again on 0.01 mg LDNI saw an MCAS specialist who let my try LDN, but it was too sedating even at .01 (made me bed bound again and I'm having to claw my way back to civilization, again).In context ↗ | Severe | |
| 2025-09 | improved from severe to moderate on pacing, MCAS treatment and other measuresNow, if it’s a good day I can do about 35% of what a human with “typical energy” can do.In context ↗ | Moderate | Pacing and the energy envelope |
Adverse events
- Low-dose naltrexone“I was on .01 LDN, and while it helped my hives, tight fascia, and stomach pain, the fatigue was intolerable. ... it was too sedating even at .01 (made me bed bound again and I'm having to claw my way back to civilization, again).” Made symptoms worse
- “He also recommended too high of dosages which caused overstimulation (headache, dizziness, etc).” In context ↗ Side effects
- Baicalein and quercetin“I then took out the quercetin because I was feeling overstimulated.” In context ↗ Side effects
- Hydroxyzine (Atarax, Vistaril)“I couldn't do the hydroxyzine because it was so sedating” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
Fatigue after working out
In context ↗ - Brain fog
could barely hold a conversation because of the brain fog, and couldn’t even watch tv because it was too stimulating
In context ↗ - POTS & dysautonomia
I was eventually diagnosed in 2024 (hence my Reddit name) with POTS which led to other diagnoses.
In context ↗ - Mast cell (MCAS) & allergies
I have CFS along with POTS, MCAS, and several other things that contribute to the fatigue.
In context ↗ - Sleep problems
Wake every 2-3 hours at night
In context ↗ - Pain & fibromyalgia
Has helped with hives, nightly stomach pain, soreness upon waking (tight fascia).
In context ↗ - Headaches & migraine
Excedrine for stubborn headaches
In context ↗ - Gut problems
constipation alternating with loose stool
In context ↗ - Light & noise sensitivity
Sensitivity to light, sound, smell (seems to be improving with MCAS treatment, particularly smell)
In context ↗ - Breathlessness
Helped significantly with shortness of breath.
In context ↗ - Anxiety & low mood
Tearfulness when in a severe flare
In context ↗ - Tinnitus
Tinnitus (seems to be improving with MCAS treatment)
In context ↗ - Temperature regulation
Trouble regulating temperature
In context ↗
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