chrysilla: HUGS! (HUGS!)
[personal profile] chrysilla
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:
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. The nice but not very helpful new GP referred me to the CFS specialist I was referred to last year by a really nice sleep doctor who was more up front about the specialist's inability to take any insurance ever -_-. Although now that I have the FSA, and I've already hit my out-of-network deductible via acupuncture (I think?) I might be able to handle those costs now. But appointments could be $150-200 if I'm remembering what they told me last year.

While reviews of the specialist are mixed (helps, doesn't help, made me allergic to supplements) she's apparently into the 'low dose naltrexone' craze which I'm curious about. At the very least, way fewer side effects than going on antivirals (ugh).

Not sure if its worth $200 a session to get one $45/month Rx, but there's at least a chance this doctor actually understands CFS and wants to help? Also, might be nice if I could get her to sign a Rx for my vitamins and supplements, so *maybe* I could get those covered on the FSA. She's also done studies on stomachy stuff vs CFS, which may well be my main problem. Can't hurt to call.

Also called my psych last week to ask about LDN, b/c while I'm not sure if he treats addiction patients, regular-dose-naltrexone was originally designed to treat opiate addiction. He hasn't gotten back to me yet, but I wanted him to think about it before I saw him this month, b/c I might not see him again for a few months. Technically LDN is also used to treat depression and PTSD, so maaaaaybe he could help me out?

That's another thing- $200 for a specialist when I'll just be managing and keeping track of all these supplements/medications on my own anyway, b/c most of my doctors don't actually remember who I am when they see me. I think the exceptions for me are my psych (b/c he's awesome, he even remembers which therapist referred me) and my allergist (b/c I see him twice a month). And my acupuncturist, but our relationship is a bit odd, b/c while we've only known each other in a profesh context she is a geeky friend-of-friends.

I'm also going to see new endocrinologist, recommended by my needler, who is OK with LDN. But I won't see him until mid April. On the upside he can do Monday morning appointments, which means I don't have to use vacation time. I'm hoping he won't be like the last endo I tried, who prescribed giving-up, watching more tv, and learning to knit b/c nobody recovers from CFS/EBV. *headdesk*

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
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7-Old normal, YAY!

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