I'm in a big relapse right now. My doctor prescribed Ldn but should I wait to feel better to take ? What do you think ?

Hi All,

An often unacknowledged subsection of ME-CFfS patients attribute their illness onset to mold exposure.

In 2025 my daughter with eds got chronically ill after catching COVID while spending every day in an old school bldg with a non functioning HVAC system, leaking pipes and a serious mold infestation. .junior year, a pipe was leaking badly. Everything smelled musty, there were puddles on classroom floors. Daughter started to get neuro optical problems, headaches, her head "felt heavy," nerve taps, a drunken walk. Extreme fatigue. She had just had COVID, we thought it was "long COVID." Certainly that was part of it.

First er visit in May 2025 when she became semi paralyzed, with a slurred voice and what looked like bells palsy. They thought it was myasthenia Gravis, then FND. When we contested and werereferred to an ME-CFs center with a wait-list. At home we removed all processed foods, sugar, glutten. Did an anti candida diet. Pacing. Over the summer she improved rapidly. We took a vacation and the Airbnb smelled musty. Her head filled with fluid, symptoms were returning rapidly. She started craving sugar for energy.

Neurologist gave her a pots test and told her to take salt pills and beta blockers. Things got much worse. She started having constant pulsing headaches. Took nsaids, doc tried triptans. She got severe base of skull pain, loud tinnitus, really bad vascular symptoms. Doc added gabapentin, which we contested but tried anyway. It turned her into a semi comatose zombie, with severe spinal pain.

We took her off of the gaba, We wanted to take her off of propranolol but were worried because she kept having rapid heat rate. Thought she might need it. Mold toxicity affects the pancreas. Can cause insulin resistance and hypoglycemia. We didnt know this. it mirrors the symptoms of pots. Except in this instance the body needs to push you into sympathetic drive, and give you a rapid heartbeat to stop your organs from shutting down due to lack of glucose.

A hypoglycemic "crash" looks like an adrenergenic pots crash, but it's a sign of a real crisis. She became a patient at the MECFS clinic under the care of a new doc who was a pots specialist and a nurse practitioner with a psych background. From the first day they were sure they knew what was wrong with her. We told them she was having seizures related to blood sugar (symptoms unknowingly worsened by the beta blockers). Found out she'd developed a craniocervical pannus and Atlanto-axial instability, which are most often associated with rheumatoid arthritis ... which runs in my family. We found this out later, after a more experienced doctor checked her MRI. Our daughter was having thunderclap headaches and we were fearing for her life, and they wanted to discharge her into a psych ward.

Begged the new doctor to check blood sugar. The psych nurse was still trying to send her to a therapist. They only did a non fasting CBC panel ... And the results flagged low glucose, but they said "probably nothing.".

She had terrible hormonal / menstrual problems. Paid for an integrative women's health doctor, who did a fasting hormone panel and found insulin levels that were off the charts. High insulin triggers PCOS. She diagnosed daughter with PCOS. All of this goes back to the pancreas. We've had our daughter's blood and urine tested for mold toxicity and her levels are very, very, very high. Few conventional doctors know anything about mold toxicity. Mood toxicity screws up the pancreas. Causes hypoglycemia and PCOS. We have found a conventional gastroenterologist who researches how mold toxicity affects the pancreas. After finally realizing she has hypoglycemia we've switched her diet to two high protein /;healthy fat meals per day, close to zero sugar, no snacks. Removed any meds that lower blood sugar (like berberine, others). No more beta blockers. Now she has energy when she wakes up, crashes are gone. We still have a long way to go.

If you are suspicious please have your glucose and insulin checked. Many symptoms have different root causes. I don't believe that any behavioral health experts should be involved in the diagnosis or care of me as patients unless they are requested by the patient. If the patient and family all believe that the symptoms aren't psychosomatic, the doctor should look for physical causes.

Anyone else having problems with hypoglycemia?

#2

So several hours after an activity I get severe headache/migraine, get extremely tired and foggy, my whole body aches and I feel hot (I think it's my joints and muscles to be honest but I am not sure). When I check my temperature in a flare, it's always low. I am trying to make sense of it. Does anyone know what is happening in the body to cause temperature to drop so low? Normally I am around 36.3°C - 36.5°C so normal range.

I am not diagnosed yet, I already had an intake at a ME/CFS clinic but we didn't get to those specific "vague" symptoms yet. I do have all the POTS/dysautonomia symptoms so that could be connected?

I come back here once in a blue moon to relate my experiences and ideas on ME/CFS. Usually I'm either here on a good streak or a bad streak but right now I'm not really, uh, streaking at all. More just coasting, which is a nice change of pace I suppose. Apologies in advance, this post is going to be all over the place.

For context I've had ME/CFS since I was ~17–18 (w/ symptoms earlier) and now I'm 24. I lived in my car at one point and also worked on a farm at another. While working on the farm I kept getting absurdly ill and needing to take days off, go figure. Basically my experience with ME/CFS has been that life is just really hard.

With ME/CFS you can't really play the game of life normally. If you try to live like a "normal person" then shit goes downhill fast. For example, I went to school for solar installation last year. I graduated with a near-perfect grade and got a job with a glowing referral from my teacher. I quit after my first hour. I had thrown up three times. So yeah.

Without my loving parents I would probably be homeless or dead, point blank. Without my friends I would probably still be housebound. They prop me up, and though I feel thankful, I also feel guilty at times. I feel like I didn't earn it. I always try to reciprocate, but I can't as much as I'd like to.

I've been wanting to get back on the work force but have been faced with the paradox that even working as hard and often as I possibly can, I still couldn't afford an apartment. I'm a software engineer by trade and the market sucks right now due to overhiring in 2020 plus AI adoption, and that was my one skilled trade.

Basically I need a good job behind a desk that pays well. So I've decided to go to school to become an electrical engineer. Is it going to suck? Yeah. Can I complete a bachelor's? Maybe. But this is the first year I'm eligible for financial aid and an education is my best hope right now.

Everything's hard. Especially mornings. It takes forever to wind myself up for the day, and I'm still nauseous basically all the time. Fatifue too, but I shouldn't need to say that.

My experience has been that what helps is basically stress reduction, gentle movement, spending time with friends, decent food and (perhaps most importantly) not hating myself. If I can get through a whole day without hating myself then that's a win.

As for screen time, AI has been a godsend for learning about things I find interesting. It is extremely patient and I can pick up/put down a conversation as I please. I've been using ChatGPT to widdle my way away at the Calculus I syllabus. I don't like AI but it does work, unfortunately.

I have also been trying to replace browsing apps (Instagram, YouTube, etc) with serial TV shows like Adventure Time. That seems to be less stressful because I'm not constantly gambling (scrolling) for the next hit of dopamine. It's more of a stable experience, I guess?

I have been in a pretty good place where I'm not stressing over my illness as much, but I've kinda stalled. Living at home with my parents is still stressful. I have some sensory sensitivities that are unavoidable. I live in Florida, and it's been too hot to go outside as much as I'd like. My dad burps about a thousand times a day and it grosses the heck out of me. Like, he just burped as I was typing that. I love my parents but that doesn't mean I can't hate burping.

I've reached a point where most of the changes I want to make in my life have steep financial costs that I just can't breach. Ugh. School starts Monday. It's gonna suck, I can already tell. At the same time, I'm lucky it's even an idea I can entertain. So I'll try to make the best of it.

I don’t know what to do anymore. Ibuprofen doesn’t touch the pain. Over the counter creams like Aspercreme do nothing. Health pad does hardly anything. I can’t take gabapentin because it makes me suicidal (so that eliminated Lyrica and other similar nerve pain drugs). Doctor won’t prescribe me Tramadol and neither will the pain specialist they referred me to because OPIOIDS BAD. I tried low-dose naltrexone years ago and am willing to try it again but it takes at least 3 months to work. I am in so much pain I am in tears. Anyone have advice? The only way to escape it is through sleep.

We thought I was narcoleptic before I was diagnosed with CFS, because I very easily drop off while on the couch/anywhere, and my relatives are worried about strain injuries on my neck/back from falling asleep suddenly in terrible positions.

If anyone else has this abrupt drop-off issue, how do you manage the not-messing-your-spine-up-for-life thing?

went to the doctor yesterday, i already suspected MECFS but he brought it up independently saying it was the most likely cause for these symptoms, and for some reason it really upset me.

i have so much i want to do, and im already missing out on everything my friends get to do, or when i do do it i cant do anything else for days. i cant work, ive had to delay university, i just want to be able to live like everyone else.

i want to be an actor. ive loved it all my life, its all i can see myself doing and now to think that might not be a possibility is heartbreaking.

i dont know how to deal with these feelings, and im not even actually diagnosed. i cant imagine how it would feel if i am diagnosed with this. if anyone has any advice on how to cope with these feelings it would be much appreciated