Just so I have it in writing, or in case anyone actually checks this site periodically, the reason I haven’t been posting is I’ve been sick. Like really really sick. Like I had to quit my job and have been mostly homebound (other than doctor appointments) since June. I’ve had a few good days here and there where I almost felt normal again, but mostly something is “wrong” every day, whether it be constant internal shakiness, nerve pains in my head, my ears feeling completely clogged, or my right ear tinnitus acting up and causing me to feel suicidal.
I blame all of this on my former workplace, by the way. They were stripping and re-staining office doors (because they’re too cheap to buy new ones) in an un-ventilated space in our building. For whatever reason I reacted badly to it. I repeatedly asked them to do something about it and they didn’t. This went on for two months before I made the tough decision to leave, but by then the damage was done. Hindsight tells me I should have a) called OSHA and b) quit much sooner when nothing changed.
In any case, since then I’ve been to the ER and tons of different doctors trying to pin down why I feel so bad.
Tests/Results:
MRI – clear
Neck x-ray – clear
Chest x-ray – clear
EKG – clear
Allergies – minor dust mite, nothing else
Celiac – no sensitivity to gluten
Vitamins & minerals – all within range except vitamin D was low (23)
Thyroid – no issues
Scope up nose to check eustachian tubes – no inflammation
Epstein Barr – elevated IgG (VCA, EBNA, and Early Antigen) and negative IgM
Antinuclear Antibody (ANA) – 1:320
The only thing that came of it was that I have reactivated Epstein-Barr virus, and I only learned about this via an integrative doctor (who is treating my brother for Lyme disease) as the two Western doctors I saw (a nurse practitioner and a rheumatologist) both interpreted the test results as being a past infection. And yes, I did my research, and my current doctor was right based on what is on the internet – the virus reactivated. I assume it was either from the sinus infection that the chemical exposure kicked off, or the stress of dealing with (at the time) an unknown illness and missing so much work and not getting the support I needed.
In any case, I’ve been on gluten-free and dairy-free diet since mid July in an attempt to lower my systemic inflammation as well as taking supplements to boost my immune system in an attempt to put the EBV back into dormancy. It lives in 95% of the population and never goes away (much like chicken pox). The problem with the supplements is I can’t tell if they’re really working because some days are better than others.
What I’m taking:
L-Lysine – 2000 mg daily (previously was 3000 mg)
Vitamin C – 1000 mg daily (previously 2000 mg)
Vitamin D (with Vitamin K) liquid – 1000 IU daily (previously 1000 mg)
Probiotic – Culturelle daily
Magnesium Glycinate – 450 mg in the evening
Melatonin – half mg at night to fall asleep and sometimes another 1.5 mg if I wake up in the middle of the night and can’t fall back to sleep
I also just starting taking a small amount of monolaurin, and plan to take lemon bioflavanoids once delivered by Amazon. I cut back on the supplements because I’ve been feeling this “brain buzz” that might be over-stimulation from them. I’m really not sure so it’s been a guessing game.
I’ve been seeing a therapist to learn CBT to try and cope with the ringing (also known as tinnitus) because it is by far the most distressing symptom. I’ve actually had it since July 2017 but it was less intrusive back then.
I’ve lost 35 lbs over the past four months because for a long time I had no appetite, and now that I do I have such a restricted diet that it’s way too easy to not eat enough calories. I don’t fit into any of my jeans and even my underwear is big on me because I’m about 108 lbs which is the lowest I’ve been since probably before or during high school. I wanted to lose weight – but not this way!
From searching this blog’s private medical entries I see that I’ve had ear and ear ringing issues on and off going all the way back to 2007 but I guess it never lasted long. It bugs me not knowing what caused the chronic ringing I have now. I know it’s not a tumor as that was ruled out in 2014. I have mild high frequency hearing loss (6000hz-8000hz) in that ear, but I don’t know what caused the hearing loss itself. The ENT who found the loss claims allergies, but my allergist said that’s not possible. Ironically at the time this dumb ENT told me that I started taking Zyrtec which I’ve since learned can CAUSE ear issues. Then again, so can pretty much all the drugs I’ve taken over the years, including ibuprofen, Nexium (and other acid reducers), Lyrica (which I only took for three weeks in early 2017), Xanax (which I’ve taken on and off for over a decade), etc. I’ve also been to about 9 concerts with no ear protection, listened to headphones for many years (albeit not loudly), and worked in a call center for years. Any of those things, or all of them combined, could have caused the hearing loss. Or a virus could have, like it did back in 2013 when my balance was affected in that ear. I really don’t know, but it’s distressing because things like Menieres Disease becomes a concern (although not one ENT has thus far has suggested it and I’ve seen four different ones in the last five years, so perhaps I’m worrying for nothing).
Bottom line – I have no idea if when I’m going to feel normal again. I have been to physical therapy and an acupuncturist because all my muscles in my neck and shoulders, and even the back of my head, are super tight. I also seem to have jaw issues from clenching at night, so I’m getting nightguard from the dentist next week. Will any of this fix me? I have no idea. It has been suggested some of this is anxiety based, but who wouldn’t feel stressed and anxious after going through all this? When I sleep at night I wake up repeatedly feeling like my head is being crushed by it’s own weight. Even though I slept 9 hours last night I feel terrible today. My ears felt super clogged in the morning but seem a bit better now, but regular every day noises seem to hurt them, like the clacking of my keyboard. It’s quite distressing because hearing is so important! You take yours for granted until something like this happens.
I try very very hard not to freak out and get too depressed, and all things considered think I’m doing pretty good currently considering I’m on NO medication, but it’s still very difficult. I mourn for my past life and what now seems like petty medical complaints in comparison. I also mourn for simple pleasures like being able to fall asleep on the couch. I can’t relax enough with my stupid ear to do that anymore. I pray for a cure someday, but in the meantime am hoping I’m not in for a multi-year battle for my health like my poor brother. I’ve always felt bad about what he was going through but you can’t really understand it until you’re dealing with it yourself. And then you go online and realize there are way too many people out there suffering with all sorts of ailments and it makes me very sad. I’m only 43 and would like to have a long life and enjoy my retirement and right now that seems unlikely. I hope I’m wrong and that this too will magically go away like all the issues I’ve had in the past. This is hard for me to believe, however, when I’ve never had an issue last this long.
One thing I will note regarding my new diet (which is SO NOT FUN) and the supplements – they seem to have helped my acid reflux and thus my panic attacks. I haven’t had one in two months now! So there is one positive result. I hope to be able to report back with more soon.
