chrysilla: HUGS! (HUGS!)
Today it's the perfect gloomy trenchcoat+boots kind of weather. So that's lifting my spirits a bit.

Mixed weekend, tho. Read more... )

After paying bills I ordered some supplements for next month's budget, including "NAC" which is the latest magical EBV cure I've heard of. Its a precursor to the body's fave antioxidant called glutathione (GSH) (which just gets digested if taken itself), but while helping the liver and eliminating free radicals = good, I'm not sure how that helps chronic EBV when there's no die-off stage like with a bacterial infection, and thus not much need for detox. Tho there are also claims that it can inhibit/relieve inflammation responses, which *might* be why it sometimes helps with mental illness. But might as well try it, right? Who knows when I'll ever get to try LDN. I'm just losing faith that anything otc can cure my brainfog.


Guess I'm sticking with Amazon Prime, even if I lose the student discount for not being enrolled for a couple semesters. It seems to be paying for itself, tho the researching of individual supplements and products can be a bit overwhelming sometimes.


Not sure about scheduling game this month. Since my fatigue has 'leveled up' (and not the rest of me), I'm not sure I could get thru a weekend with running my own game, and still have energy for work the following week. Which would mean two months in a row off from game, tho. My energy levels are just too unpredictable :-(

<3 Chrysilla
chrysilla: HUGS! (HUGS!)
My psych apparently didn't get my message asking about LDN two friking weeks ago, so he hadn't done any research or thinking about it, so he said no to letting me try it on his Rx yesterday :(. He only knows it for its original uses and strength. Suxxor. He wanted to put me on more Wellbutrin, I was like nope. On the upside, he confirmed the lysine-effect on this type of virus, so at least an actual doctor weighed in on this part of the plan.

On my way into work I stopped by Lilac's on Bleeker to drown my sorrows in fancy (dairylicious but still gf) chocolate, after spending weeks resisting the cheap Easter candy I <3. Because who gives a f#$% about my inflammation problems anyway :-P

I see the endocrinologist who treats my friend with LDN on 4/3 (earlier than I realized) so hopefully he won't think I'm crazy. Maybe I'll tell him about the 'knitting endo' to garner sympathy, tho that didn't work on my psych.

But overall very mopey and defeated right now. Just ... F#$% you doctors :-/


Warning: fabric binge )


Then there's the question of *if* I got to try LDN, would it bring my size/weight down? Would I then have to take in everything I've sewn in the last few months? Another good reason to put it off a couple months. On the outside chance I get to try experimental medicine drug.

<3 Chrysilla
chrysilla: (b5 one of those days)
In spoonieproblems news, chatted with the needler last night who isn't sure #EBV has a 'die off' stage like a bacterial infection, b/c viruses are different, and don't have cell walls full of toxins that flood the body as the infection is fought off. She thinks I may just still be adjusting to the new supplements. Its technically a herpes virus, and herpes patients don't get die-off reactions, right?

Also, since EBV lives in the white blood cells, and it can take 3-4 months for the wbc's to cycle through, the Lysine will definitely help in the long run, wearing the virus down and then preventing future flares, but it won't feel like a quick fix.

I wonder if the EBV is not so much fighting back against the new treatments as just being a jerk due to the high levels seen in January :-P Otherwise, no explanation for the recent uptick in fatigue. Unless the early spring has just reactivated my sleep disorder to ridic levels.

Slept pretty well again last night, so that's good. Still not sure if I can/should go out this weekend tho. And waaay better on Wednesday night after a meditative epson-salt bath.

My needler also gave me good tips on how to schpiel my psych into prescribing off-label LDN this Monday: autoimmune -> inflammation of the central nervous system, which *might* indicate why despite Strattera, Wellbutrin, and acupuncture the f'ing brainfog just won't f'ing clear up.

Brainfog is definitely my most hated symptom. Even if I was too tired to get out of my office chair, I think I could accomplish some small part of my goals if I didn't have this problem :-/ Typing is not very draining, I don't think.
chrysilla: (b5 one of those days)
So I've lost about 8ish lbs off my average weight since early February, which *might* indicate that the no-dairy rule on my current diet plan is helping deflate some inflammation.

From now on, I'd rather not use the term Paleo b/c it annoys me. It is now the Inflammation Diet. The "My Insides Are On Fire Diet" was too long and the initialism was clunky. MIAOFD? Meh.

Viruses get die-offs too? )

Sleep is still f'ed, but not sure if that's due to bodily weird or Impending Spring Syndrome. Very annoying tho. Impending Spring Syndrome has also encouraged me to buy new makeup, and make new clothes, but then the latter actions are stymied by Chronic Fatigue Syndrome, which claims it was here first. *sigh*

Current plans, try to settle down my accursed FOMO, get more sleep, take more epsom salt baths for skin weirdness (you finally cleaned the darn tub, now f'ing use it pls). The whole city + dayjob will be shut down on Tuesday b/c snow (french toast alert level at 4), and would like to do some sewing for a project, but will settle for more coma-time.

Not sure if I'll be running my tabletop game this month, or going to the MES NYC Feature Game this weekend, b/c apparently I need my weekends for coma time this month :-P Not sure if I should call it now, or wait until the last minute.

<3 Chrysilla
chrysilla: HUGS! (HUGS!)
Today I'm starting on L-Lysine, tho I'm not sure I haven't taken it before, from the good doc I saw back in 2012? *shrugs* Supposedly it shanks EBV, here's that theory in a nutshell: http://epstein-barr.blogspot.com/2005/11/positive-results-with-lysine.html
Further googling repeats that theory in more complicated explanations. Some sources say I should be taking 500mg three times a day, but Ima start with once.

Tried increasing my vitamin C from 1g to 2g's last weekend, but then had a very painful IBS flareup for no apparent reason. So I'm back down to 1g, and trying the lysine instead. Might try 1.5g in a few weeks.

I should post a list of all-the-supplements I take, and then post new lists as things shift and change. Log how my life improves or doesn't.


Energy levels are not so much increasing as becoming more spastic or even bipolar (not mood wise tho, phew). Some weekends I get a ton of housecleaning done, or I successfully run a session of my tabletop rpg for an evening, and other weekends I can't do more than doze on the couch listening to music I already know*. I've had problems remembering to eat enough on weekends, but even with that problem fixed I'm still having trouble with this. I feel like I'm looking for one more (magic?) pill to put me over the edge of healthy, but I'm not sure if that's delusional at this point.


The hunt for a new doctor continues. Read more... )

There is an EBV patients group on FB someone on twitter pointed me to, but I had to shut off the auto-updates b/c of the antivax nonsense. Just... no.

That's really the worst part of this. I like peer reviewed science. But unfortunately I'm not dying fast enough for medical science to give a crap yet. To the point where I can't even find a doctor to treat me for reasonable fees. So I have to trawl the loonie fringe sites for self-treatment ideas. Ugh.


And that's the spoonie news for this ... week? Weekly updates would be good. Remembering to actually track that often would be a miracle tho.

<3 Chrysilla


*FYI, there is such a thing as being too fatigued to listen to new music, or read a book. Or watch a new-to-you movie. Or watch a new episode of a tv show you already know and like. And I've been this way for almost 6 years now. If that *wasn't* the case I'd be a nerd trivia master by now :-P
chrysilla: (bb accounts)
Wondering if quitting my dayjob for a lower paying work-from home thing (creative + patreon, or freelance research etc) would be better or worse in the long run.

Given research about EBV without a doctor's guidance thus far (urgh), it seems largely the virus gets reactivated by stress. But ... how much stress? One really bad day? A sinus infection? A constant low drone of stress? Furthermore, many people seem to do better at managing it (or curing, according to some anecdotal accounts, meh) on various clean/elimination diets plus daily vitamin supplements and/or occasional vitamin megadoses during active-virus time. And none of that is ever covered by insurance. So... if I quit my dayjob, would I need less expensive healthcare? Or would it only help for a short while, like with everything else I've ever tried, and the virus will just reactivate itself again for no clear reason?

breaking it down )

So... very much a gamble. Could pay off, might blow up in my face.

What I really want right now is to just get an EBV *reprieve*, even if just for a few months to a year. Then I can get my creative stuff off the ground and see whether or not I even *could* make enough $$ from it to quit my dayjob, and then I can make a plan to move from one to the other a bit less jarringly. Or the +ment bonus from having those projects work out could sustain me enough for the dayjob.

I think most ppl who would tell me to quit my job without much forethought probably have waaaay more health privelidge than I do. Meh.

<3 Chrysilla
chrysilla: (b5 one of those days)
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.

Five years of suck )

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

Today's Health Rating:

1-Horrible
2-Thud
3-Meh
4-OK
5-Yay?
6-Yay!
7-Old normal, YAY!

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