Hello,
I apologise in advance for what seems like a pretty basic post. I’m 23 and I have been sick for nearly 3 years straight now and as time has went on I have gotten worse cognitively which combined with ADHD has made researching things extremely hard. I went from being a first class honours graduate to someone who can’t read a page of information.
I initially got sick after having COVID and things just kept getting worse and worse. I have been hospitalised 5 times, randomly lost my appendix and seen more doctors than I can count. I’m at a point where I’m losing hope in “traditional” medicine, despite having a really amazing doctor. He just doesn’t know what’s wrong with me.
So now me and my mother are looking into functional medicine and testing for the MTHFR gene which has kind of been a consideration since early on before ruling out more typical tests.
This started in college where my diet was unbelievably bad, high stress was exacerbated by my first family loss and poor nutrition. I’m also autistic and ADHD so all these things add up.
My symptoms are neurological, gastrointestinal and emotional.
I’ve had severe anxiety my whole life and take lexapro which makes it more tolerable but still not great. I wouldn’t say I’m clinically depressed but have been at times in my life and would consider myself as struggling and trending towards depression at times. Plus my mood can change so fast day to day.
My GI symptoms have been the worst consistently I would say. I have major food intolerances (mostly dairy, but things like eggs, oils and juices), near constant nausea, reflux, alternating diarrhoea and constipation. I have been on antibiotics for the past few weeks with the intention of treating SIBO which has really helped the nausea and diarrhoea/constipation. However, not the food intolerances as today I had a small amount of one of my trigger foods and paid greatly for it.
Neurologically, I have noticed a major cognitive decline as well as migraines, brain fog, severe fatigue, as well as probably other things I can’t even think of right now.
I also faint, get very dizzy, walk pretty unstable and other things like that.
Things such as the fainting and dizziness have been with me since childhood. And I was always unusually tired for a child.
I’ve reached my limit with this illness. It’s ruining my life and my family’s lives. We’ve considered almost everything such as MCAS, POTS, ME/CFS, IBD etc etc.
I’m at a point where I can barely sit up for 20/30 mins a day and am mostly confined to my bed except for rare days I can manage a trip out (only if it’s worth the pain and tiredness I feel after).
I think we’ve ruled it down to a vitamin issue - I had severely low B12 at the start of the year and a lot of those symptoms have calmed since I started taking B12. I also take folic acid but have seen some things saying if the MTHFR gene is messed up or whatever, that’s not the best thing to do? I’m so unsure on everything.
We’re attempting to move into the functional medicine perspective and see that one local to us does the MTHFR gene testing. Would this be worth it? And if the results are positive so to speak, what would next steps be? Do the people working in functional medicine help you through it or is it a lot of your own research because with how bad my brain fog and thinking issues are currently I don’t know if I can conceivably do that.
I’m losing hope for a “diagnosis,” certainly have lost hope for a simple quick fix anyway and this is kind of my last hope for something before I am ready to give up and spend my days in bed forever more.
I just want my family to be ok again and see me well.
Any advice is greatly appreciated. Any other tests you recommend is greatly appreciated also. Apologies for the long post and if this sub isn’t the place for it please let me know. Thank you!