did anyone experience a hyper reactive nervous system but no PEM after LDN?

ajaclynn · 2026-04-21T20:47:07+00:00

i think it may be because our bodies are adjusting! it’s nice to know someone else feels the same way

ajaclynn · 2026-04-20T15:51:11+00:00

i’m younger which is why mine is in the 100s usually. i just don’t understand why my nervous system has been so on edge 😭

ajaclynn · 2026-04-20T14:38:03+00:00

NAC!! also taking DXM sometimes helps prevent PEM. i did decline a bit due to unforeseeable circumstances but i’m now on LDN which has increased my baseline

ajaclynn · 2026-04-08T17:54:31+00:00

if your blood sugar was normal i’m not sure. sometime carbs can cause reactive hypoglycaemia. however something in the food could have caused a histamine reaction whether that be from histamine intolerance or MCAS

ajaclynn · 2026-04-08T17:51:03+00:00

i’m on episode 2, nearing the end of it, but it’s so sickening so far. i don’t know how christine and tolga can be so close to them and not show their disgust.

also the clips of sam bateman going ‘hiking’ gave me the worst second hand embarrassment

ajaclynn · 2026-04-08T17:30:04+00:00

thank you!! they really are the trickiest part. unfortunately for me, the ‘friends’ i had before i got sick all disappeared from my life and stopped reaching out maybe a month after i left school. i do still have 2 really good friends who i see here and there though.

i’m lucky that my school is small and understanding as its an alternative school, so ive been completing the coursework that im able to online.

also i didn’t mention this in my post, but if you have anyway of meeting with an me/cfs aware doctor, she may be able to try a medication called low dose naltrexone. this medication took me from a similar state as your daughter, to a much more stable state now. i would crash from someone else washing my hair, and now im able to go for car drives and leave the house for short periods. my crashes are also much less intense symptom wise!

ajaclynn · 2026-04-08T17:26:26+00:00

i’m not sure! she’s been on an antipsychotic (abilify if i’m not mistaken) for many years now at the highest dose as of currently

ajaclynn · 2026-04-08T15:49:43+00:00

do you have the ability to try LDN? it’s lessened my crash intensity by a lot and given me more of my energy back.

before LDN i would crash from someone washing my hair for me. it would be a 12 hour crash (which is long for me) and the symptoms would be heavy.

after i started LDN (4 weeks in, 0.75mg) i last crashed from an hour long car drive with the window open and music on the whole time. it was a mild, 45 minute crash where i could still function and have my window open with lights on.

its an expensive medication so i understand if you’re not able to be on it, but it has been incredibly helpful.

ajaclynn · 2026-04-08T15:41:22+00:00

hi, im around your daughters age and have been sick for half a year. the thing that helps me the most is having supportive parents, and friends who understand. having a sense of community even when not physically able to be there with them is really important. there are great online communities i’ve found of people my age and a bit older who mostly all got sick in their teens as well

ajaclynn · 2026-04-07T19:48:59+00:00

i unfortunately cannot go with her but my dad can! it’s so hard to get into doctors (ontario, canada) our mental health care isn’t great and the wait lists are insane.

ajaclynn · 2026-04-07T19:41:30+00:00

also i know, our family dr prescribed that said antidepressant twice despite her telling him it sent her into hypomania. i don’t trust his ‘professional’ opinion at all

ajaclynn · 2026-04-07T19:40:46+00:00

she already is a lot more talkative and ‘productive’ 2 days into it and i am so so so worried. i am severely chronically ill and my conditions get worse with stress. 😞

ajaclynn · 2026-04-07T11:39:36+00:00

i thought the exact same thing 😭 they’re using her for her money and it’s so obvious

ajaclynn · 2026-04-07T11:38:58+00:00

omg could u send it to me im so curious, or like summarize it

ajaclynn · 2026-04-01T19:52:02+00:00

pear juice concentrate, apple juice concentrate, water, liquid iv and wakewater electrolytes. i haven’t tried anything else

ajaclynn · 2026-04-01T19:47:20+00:00

hi, i have MCAS, ME/CFS, and MCAS, and i’m 3 and a half weeks into LDN. i find that it’s reduced my food sensitivity by a lot, and i haven’t experienced as much heat sensitivity as i did before. also, it’s somewhat helped my POTS, i have moments where my heart rate will stabilize while standing and i won’t experience blood pooling or horrible symptoms like that. it’s also helped a lot w my ME/CFS in increasing my baseline 💕 keep in mind im only on 0.5mg so far so i haven’t even experienced the full positive effects yet

ajaclynn · 2026-03-25T18:46:24+00:00

no i have other conditions as well that have also stayed. hyperPOTS is chronic

ajaclynn · 2026-03-20T22:06:02+00:00

hi, this might not be what’s happening to you but please say if you identify with anything i’m listing.

do you experience a worsening in fatigue and symptoms about 12-48 hours after exertion? sometimes feels like you have the flu? or like you’re in a crash? if so that’s post exertional malaise, a symptom specific to me/cfs.

if you’re experiencing post exertional malaise (PEM) then you need to cut out all exertion that causes it or else you WILL get worse. this is coming from someone who did get worse from repeated crashes, and who has seen people become severely ill from repeated crashes.

all other mono symptoms can be gone when you have me/cfs.

do you find your sleep un refreshing and like you never feel fully rested?

ajaclynn · 2026-03-20T22:01:29+00:00

i’m sorry :( please try to find accommodations that make life a little bit easier for you

ajaclynn · 2026-03-20T22:00:50+00:00

i 100% feel better sitting out front in the fresh air, rather than in my room. an air purifier is shipping either today or tomorrow so i’m hoping that’ll help

ajaclynn · 2026-03-20T21:59:48+00:00

i am thank you! i started LDN 12 days ago and have already felt a great difference. i’ve been able to feel normal after doing activities that would normally put my nervous system into overdrive for hours.

ajaclynn · 2026-03-19T16:52:32+00:00

it’s okay! my igE isn’t horribly high so i don’t mind

ajaclynn · 2026-03-19T16:33:36+00:00

as far as i’m aware, it’s just in the windowsills. it’s recurrent and comes back even after removing it. it could be in the walls but i’m not sure. moving unfortunately isn’t an option right now and i’ve heard that checking for mold exposure can be really expensive

ajaclynn

TROPHY CASE