Mostly housebound with ME/CFS, now somewhat better with methylene blue and guanfacine

Condition: ME/CFS
At worst: Severe (mostly bedbound)
Ill before improving or writing: 4 years
Last post: Oct 2026

In their words

Condition: ME/CFSmy cfs is secondary to toxic mould colonisation so theoretically it should resolve once I’m finished treatment In context ↗
At worst: Severemy baseline has improved from severe to moderate in the meantime In context ↗
Now: Somewhat betterI’ve gone from 5 day PEM to zero PEM and my cognition is better too ... i still have really severe brain fog and pots and everything
Began after: COVIDI got long Covid in 2021

Read from 137 of their posts and comments; links to the 57 this page draws on

Summary

A UK former student who got long COVID in 2021 aged 19, later housebound by mould-triggered MCAS, POTS and hEDS, and who burnt out and dropped out of uni after high-dose stimulants. She credits methylene blue, guanfacine, HBOT and midodrine for improvements; she is trialling rapamycin but says it is too early to tell. She can now do 20–45 minute walks and up to 6,000 steps without PEM, but is still severely ill and mostly housebound with brain fog and dysautonomia.

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What they tried

What they credit

ketotifen· Helped a lot HBOT· Helped a lot methylene blue· Helped a lot · main guanfacine XR· Helped a lot midodrine· Helped a lot Rapamycin· Helped a lot · main desloratadine· Helped famotidine· Helped LDN· Helped · wore off Itraconazole· Helped cholestyramine· Helped Prucalopride· Helped NIR and red light therapy· Helped Visible· Helped pacing· Helped sub threshold graded exercise· Helped liposomal gaba· Helped

Also tried

daridorexant· Helped a lot · wore off caffeine / coffee· Helped · wore offmedical cannabis (high THC)· HelpedS. boulardii, PHYTO-V, L. rhamnosus, bifido blend, Elixa· Helped NAC and liposomal glutathione· Helped NAC and liposomal glutathione· Helped Xanax and clonazepam· Helped Xanax and clonazepam· Helped prednisolone· Helped propranolol· Helped psilocybin (shrooms)· Helped · wore off zopiclone· Helped passionflower, lemon balm and other gaba-increasing herbals· Helped passionflower, lemon balm and other gaba-increasing herbals· HelpedRG3 nasal spray (ginseng)· Helpedmontelukast· No changelow dose steroid inhalers· No changenicotine patches· Worse lisdexamphetamine / Elvanse (amphetamines)· Much worse gentle iron· Not said b12· Not said serrapeptase· Not said sodium butyrate· Not said PEA· Not said Quercetin· Not said sodium ascorbate· Not saiddephenylalanine (D-phenylalanine)· Not saidbetaine HCL· Not said Neurosym· Not said alpha-stim· Not said baricinitib· Not said melatonin· Not said compression, hydration and SR sodium tablets· Not said compression, hydration and SR sodium tablets· Not said Mestinon / pyridostigmine· Not said

Their words about each treatment

lisdexamphetamine / Elvanse (amphetamines) · Much worseI ended up in a severe crash bedbound for a year In context ↗
caffeine / coffee · HelpedI drink 240mg caffeine a day just to wake up In context ↗
medical cannabis (high THC) · HelpedI smoke every night in order to sleep In context ↗
ketotifen · Helped a lotMCAS meds (ketotifen, desloratadine, Famotidine) which completely resolved my food sensitivities over 6-12 months In context ↗
desloratadine · HelpedMCAS meds improved my brain fog a lot In context ↗
LDN · Helpedhave been on 4.5mg LDN for a couple years and it defo helped 20% with body aches and fatigue but it plateaued a long time ago In context ↗
Itraconazole · Helpedonly after treating one of my root causes (mould with Itraconazole and cholestyramine) In context ↗
gentle iron · Not saidI started off with gentle iron and b12 which was deficient in In context ↗
Prucalopride · Helpedwent on a prokinetic called Prucalopride to speed up gastric motility In context ↗
S. boulardii, PHYTO-V, L. rhamnosus, bifido blend, Elixa · Helpedafter doing that I felt literally cleaned out In context ↗
serrapeptase · Not saidThen I introduced serrapeptase which is a biofilm breaker In context ↗
sodium butyrate · Not saidalongside sodium butyrate at night In context ↗
NAC and liposomal glutathione · HelpedHave been taking liposomal glutathione and 1,200mg NAC daily for like two years now In context ↗
PEA · Not saidPEA 600mg, Quercetin and 4.5mg LDN In context ↗
Quercetin · Not saidPEA, Quercetin, sodium ascorbate 3G etc In context ↗
dephenylalanine (D-phenylalanine) · Not said4.5mg LDN with 600mg dephenylalanine in the morning In context ↗
betaine HCL · Not saidtake betaine HCL before meals if ur worried about famotidine In context ↗
HBOT · Helped a lotit improvement my fatigue and pots so incredibly much that I could have medium exertion days maybe 3 days a week without crashing In context ↗
NIR and red light therapy · Helpedthe best things that have helped me overall are HBOT 2ATA 3x weekly, 65mg methylene blue 2x daily (1mg/kg) and NIR & red light therapy daily In context ↗
methylene blue · Helped a lotthe only thing that's given me more cognitive capacity and energy In context ↗
Neurosym · Not saidthe Neurosym in the morning to train my vagus nerve In context ↗
alpha-stim · Not saidI use the alpha-stim before bed to relax my body In context ↗
Xanax and clonazepam · HelpedThe Xanax really fucking worked at preventing them In context ↗
prednisolone · Helpedthe only things that gave me relief was prednisolone (steroid which calms mast cells) In context ↗
guanfacine XR · Helped a lot2mg guanfacine was the biggest sustainable game changer for me In context ↗
daridorexant · Helped a lotDaridorexant was the only sleep medication that helped me with this other than benzos In context ↗
midodrine · Helped a lotmidodrine helped me a lot with the head pressure + headache In context ↗
propranolol · HelpedPropranolol controls my tachycardia and physiological anxiety I take 20mg 2x a day. In context ↗
montelukast · No changeI tried montelukast and low dose steroid inhalers and nothing lung targeted really worked In context ↗
nicotine patches · WorseIt helped me but increased sympathetic tone, hr spikes therefore pem threshold was lower In context ↗
Visible · HelpedVisible band has changed the GAME for me In context ↗
pacing · Helpedwhen I stopped all activity took pacing rly seriously In context ↗
sub threshold graded exercise · Helpedsub threshold graded exercise In context ↗
psilocybin (shrooms) · HelpedHigh key made my pots SO much better for a week the first time I tried them In context ↗
Rapamycin · Helped a lot6mg rapamycin once a week totally got rid of PEM for me and I had 5 day PEM before In context ↗
baricinitib · Not saidam now adding 4mg baricinitib a day In context ↗
zopiclone · Helpedbenzos and zopiclone were the only things that worked In context ↗
melatonin · Not saidmelatonin, daridorexant, 0.5mg Xanax In context ↗
passionflower, lemon balm and other gaba-increasing herbals · Helpedthey defo help now In context ↗
liposomal gaba · Helpedif I take Xanax or gaba then it lets me sleep and reduced PEM severity for the whole week In context ↗
compression, hydration and SR sodium tablets · Not saiddaily compression, hydration and SR sodium tablets In context ↗
RG3 nasal spray (ginseng) · HelpedHBOTand RG3 nasal spray all had direct effects on my neuro cognitive symptoms In context ↗
Mestinon / pyridostigmine · Not saidI have pretty severe pots and I’ve had some low bp episodes on other drugs like pyridostigmine In context ↗

Approaches: H1 antihistamines · H2 blockers · Hyperbaric & oxygen · POTS medication · Alternative therapies · Amino acids and carnitine · Antifungals · Antihistamines & MCAS · Other drugs and medicines · Pacing

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
2021	long COVIDI had long covid existing mild then I got toxic mould exposure triggering MCAS In context ↗	Mild
2023	severe mould exposure triggered MCAS, POTS and hEDS; houseboundmy symptoms only became debilitating when I had severe mould exposure leading to MCAS then POTS and hEDS In context ↗	Severe
2025	severe crash, bedbound for a year after high-dose stimulantsI ended up in a severe crash bedbound for a year, only just getting better In context ↗	Severe
early 2026	methylene blue and guanfacine reduced dissociation and panic; still houseboundI started methylene blue and my dissociation and fatigue improved In context ↗	Moderate	Methylene blue
September 2026	rapamycin largely ended PEM and raised step capacityonly feel like I’m pushing through when it hits 5k+ steps, have done 10k once last week In context ↗	Moderate	Rapamycin / sirolimus
October 2026	no PEM on weekly rapamycin, still limited by brain fog and dysautonomiaI’m more moderate now than severe and use less but it’s still my crutch In context ↗	Moderate	Rapamycin / sirolimus

Adverse events

Lisdexamfetamine (Vyvanse, Elvanse)“they make it impossible to pace as you are burning your energy debt into the ground with no immediate warnings/consequences” In context ↗ Made symptoms worse
Lisdexamfetamine (Vyvanse, Elvanse)“after 2 months am noticeably suffering from the lack of pacing so will take a month off” In context ↗ Made symptoms worse
Lisdexamfetamine (Vyvanse, Elvanse)“I was taking highest dose elvanse before realising I had mould which led to yes weight loss and mega burn out, had to drop out of uni” In context ↗ Made symptoms worse
Lisdexamfetamine (Vyvanse, Elvanse)“I was on 100mg lisdexamphetamine daily for like 4 months last year without realising I had underlying problems like mould and I totally burnt out and I still can’t take them without insane anxiety” In context ↗ Mood or psychiatric effects
Lisdexamfetamine (Vyvanse, Elvanse)“but I started getting really bad burnout and the side effect profile became unbearable” In context ↗ Side effects
Daridorexant (Quviviq)“daridorexant side effects are horrible” In context ↗ Side effects
Mestinon / pyridostigmine“I have pretty severe pots and I’ve had some low bp episodes on other drugs like pyridostigmine” In context ↗ Low blood pressure or fainting
Methylene blue“Initially 1mg/kg made me more anxious and hyperaroused at first” In context ↗ Mood or psychiatric effects
Mestinon / pyridostigmine“Yeah it made my blood pooling worse I was so hypo I couldn’t stand up and I felt ill asf even sitting” In context ↗ Low blood pressure or fainting
Lisdexamfetamine (Vyvanse, Elvanse)“I had to come off lisdex for a bit due to escalating anxiety it was very intense” In context ↗ Mood or psychiatric effects
Lisdexamfetamine (Vyvanse, Elvanse)“I’m pretty sure stimulants made me this bad” In context ↗ Made symptoms worse
Lisdexamfetamine (Vyvanse, Elvanse)“I was using stimulants as well (prescribed) which was making me further push my limits and exacerbate this cycle to the point I was waking up with daily migraines” In context ↗ Made symptoms worse
Daridorexant (Quviviq)“I’m on 25mg because 50mg always dropped my BP too much overnight and I’d wake up with symptoms” In context ↗ Low blood pressure or fainting
Low-dose naltrexone“I went on it 2/3 years ago after MCAS meds it gave me chronic dissociation” In context ↗ Made symptoms worse
Vagus nerve stimulation, Cranial electrotherapy (CES: Alpha-Stim, Fisher Wallace)“my ears get SO overstimulated from all the touching and tugging and rubbing so I end up taking impromptu 3 week breaks” In context ↗ Side effects
Desloratadine (Clarinex, Aerius)“when id take every antihistamine and sedative under the sun at once and id feel sedated but wired” In context ↗ Side effects
Psilocybin (magic mushrooms)“the second time I took them I didn’t realise I was in luteal phase and ended up crying all day genuine mental breakdown” In context ↗ Mood or psychiatric effects
Rapamycin / sirolimus“Had significant side effects of insomnia, wiredness, nausea, migraine and appetite suppression but at week 13 negligible side effects.” In context ↗ Side effects
Rapamycin / sirolimus“For me nausea headaches food aversion at 5mg and 6mg went away after a couple of weeks” In context ↗ Gut side effects
Lisdexamfetamine (Vyvanse, Elvanse)“I once didn’t sleep for 7 days straight because of how bad the cumulative overload was for my body” In context ↗ Insomnia from treatment
Lisdexamfetamine (Vyvanse, Elvanse)“I ended up in a severe crash bedbound for a year” In context ↗ Made symptoms worse
Lisdexamfetamine (Vyvanse, Elvanse)“I had to come off for a year and a half because of progressive burnout and my baseline has improved from severe to moderate in the meantime” In context ↗ Made symptoms worse
Nicotine patches“It helped me but increased sympathetic tone, hr spikes therefore pem threshold was lower and I sometimes got nausea from the activation” In context ↗ Made symptoms worse
Rapamycin / sirolimus“It does increase ‘activation’ in the sense my racing thoughts and stuff have come back” In context ↗ Side effects

Symptoms mentioned

Anxiety & low mood Brain fog Breathlessness Flu-like symptoms Gut problems Headaches & migraine Heart symptoms & palpitations Mast cell (MCAS) & allergies POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Vision problems

Their words about their symptoms

Post-exertional malaiseI haven’t got pem since and previously it would be 5 days after every activity In context ↗
Brain fogStill left with significant fatigue, brain fog (can’t read a book or learn complex new things) In context ↗
POTS & dysautonomiaI still have really severe brain fog and pots and everything In context ↗
Mast cell (MCAS) & allergieswent on MCAS meds (ketotifen, desloratadine, Famotidine) which completely resolved my food sensitivities over 6-12 months In context ↗
Sleep problemsmy insomnia is diabolical In context ↗
Pain & fibromyalgiaLDN just takes the edge off my joint pain and fatigue In context ↗
Headaches & migraineNow I have much fewer headaches and they are correlated to triggers which eases my anxiety a lot In context ↗
Gut problemswent on a prokinetic called Prucalopride to speed up gastric motility as I had delayed gastric emptying In context ↗
BreathlessnessGuanfacine fixed my long Covid breathing problems i was manually breathing and really shallow which was very fatiguing In context ↗
Heart symptoms & palpitationswhen I’m in PEM my HR goes to 160 and 180 very easily In context ↗
Anxiety & low moodNow my panic attacks are acute and usually don’t last for more than an hour In context ↗
Flu-like symptomsthe next few days be bedbound with flu like inflammatory symptoms In context ↗
Vision problemscompletely wiped what was left of my visual snow, blurry vision, greyed out vision In context ↗

Mostly housebound with ME/CFS, now somewhat better with methylene blue and guanfacine

Ask Miruvor AI

What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

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Ask Miruvor AI

What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

Similar stories

Almost bedridden with ME/CFS, now much better after a specialist regimen and pacing

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Treatments. Yes, they do exist.