chrysilla: (b5 one of those days)
[personal profile] chrysilla
Got it checked and double checked, and I'm having an active Epstein Barr infection right now. Since the last time I was tested for it was 2011, and that doctor explained it really badly ('andtibodies' rather than 'you have it RIGHT NOW') its very possible that this is what's been causing my CFS problems the whole time. Hard to say for sure tho, b/c no data.

Figured I'd make one blog post about it, to edit/add to when I remember more through the brainfog, rather than a zillion FB posts.

Current theory: bad digestion -> borked immune system -> EBV flare -> bad digestion -> borked immune system -> EBV flare -> etc. Feedback loop of epic fail.

Whether IBS/digestive problems caused the EBV, or vice versa, they've definitely caused a lot of vitamin/nutrient deficiencies over the years. Leading to 2012's severe face-numbing-hallucinatory migraines (B12) and probably 2016's mysterious stress fractures (no minerals for u). And I tend to test low or low/normal on most vitamins (zinc, calcium, D), even some that I take supplements for already.

Viral flareups could also explain the ongoing story of "I tried thing X, and felt better, then felt worse again for no apparent reason, stopped/diminished thing X," for 5+ years. Even if a diet hack or new vitamins put EBV down for a bit, it might have been triggered again by mental/physical stress, whether illness, anxiety, or injury. Or the virus is smarter than ppl give it credit for, and those old treatments stop being effective? I'm not sure its supposed to work that way (Gods pls send me a specialist).

Its also still likely that the initial trigger was those 3 back-to-back SIs I had in spring of 2011, even tho they were definitely triggered by allergies (and someone's filthy apartment :/) rather than germs.

And then there's the heat-intolerance, which predates my Synthroid treatments, and was confusing b/c I'm always freezing at work, but otherwise I tend to overheat. Possibly a sneaky recurring fever?

However, I don't display most of the typical EBV/mono symptoms. The nodes in my neck don't swell, but those aren't the only nodes in the human bod. Tho the others are smaller, and I might not notice an extra lump through all the weight gain? Otherwise tho, my liver and spleen seem to be OK, and I don't have chronic cough/bronchial stuff going on. And my immune system seems able to stand up to lots of other illnesses, which is why December was my first really bad cold/SI in over a year. Unless that was actually EBV flaring and not just "somethings going around"?

Meanwhile, "chronic" EBV can lead to chronic sinus and IBS problems, so that's pretty on-par for me. Ugh.

There aren't actually any *official* medical treatments for this, tho a lot of doctors will put a patient on long-term antivirals or immune-suppressants to varying degrees of success. I'm not really sure if this counts as an auto/immune disorder. My needler has suggested I ask a doctor about "low dose naltrexone" which looks interesting, but I want to see more research. It sounds too-good-to-be-true and its an expensive Rx. Not to mention its very helpful to fibro and Hashimotos patients, and I don't have either of those. Tho I did find a board-posting by someone who claims it effectively cured a 15 year case of EBV, that's anecdotal.

I really only have anecdotal stuff to go on for the most part, tho. Helping me pick out what vitamins to try out, and which I was already taking to increase. Not sure there's a silver bullet somewhere in this mess of hippie-internet-data, but at least I feel like I'm doing something.

Very glad I was already down to one course per semester of grad school, now I'm thinking of taking the summer off (again) unless the EBV is in remission. Tho I kinda want to just quit again :-/ It all just feels very pointless. Will talk to the fam about it.

For right now the plan is more tummy treatments and vitamins to strengthen my immune system, some new and some increased doses based on what I could find on the internet, while I wait for my new GP to find me a specialist. I was already planning to do a diet cleanup in February, so that was convenient, tho now I'm considering full Paleo again. Or mostly full, I need chocolate. Also, if stress is a trigger, its about f'ing time I started meditating regularly.

"Think Happy Thoughts Dammit" has been explained to me as a treatment by a fellow EBV-spoonie, but Happiness can be expensive in NYC. So... more Netflix? Even when I'm too tired to watch a new movie or tv episode (yes, that's a thing). I'm already seeing my psych next week, so I'll see what he thinks. I'm already trying a smidge of Wellbutrin for a 'lift' in addition to Strattera (my psych's had good patient experience w this), but while I'm not feeling negative side effects I'm also not feeling benefits.

I guess there's a chance that EBV could shut itself off as randomly as it turned itself on, maybe with permanent lifestyle changes, but I dunno. When I thought it was hypothyroid, I figured I'd just have to add an extra body-chemical and things would get better. Now there's an evil virus chilling in most of my cells, which can wake up whenever it wants, and leave me borked for weeks even if it goes back to sleep.

<3 Chrysilla
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