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asleep at mal 9/09
alumiere
doctor's appointment yesterday 
10/1/09 11:37
asleep at mal 9/09
i don't know how to react to this anymore...

quick recap of diagnoses/treatments before yesterday's visit:

fibromyalgia/osteoarthritis/pcos - pain meds, muscle relaxers, sleep meds, supplements to help with muscle/joint pain; work out regularly and use hot tub/heating pad/etc to help as well

chronic fatigue syndrome - supplements to increase energy, probable cause of some/all of the CFS symptoms is chronic systemic candidia so i take nystatin and other anti-yeast meds daily and am on a severely restricted diet (less than 20g of carbs/day is recommended; i do my best to meet that); the systemic candidia is also thought to be part of the cause of my fibrinoids/PAI being very high so i've been on heparin (which isn't working)

auto-immune adrenal system disorder/hashimoto's thyroiditis - take replacements for the hormones and chemicals i don't make because of this

yesterday's visit was long, scary, and expensive - $1200+ for the visit and refills on the meds i didn't already have 60 days worth of - but that was only the 7 new ones and refills on 4 meds out of the new total of 45/day - my november visit is going to be very expensive ($2000+) if we can't rule out some of the potential causes with these new tests/med trials and then decrease my daily medication counts

dr wightman is not sure what's causing the memory loss, mind blanks, numbness in my arms/legs, etc but he's very concerned about things at this point; i've gotten much worse since my last visit and the changes to my treatment made in february are definitely not helping from what we can see

it could be long-term untreated lyme disease (i test slightly positive for one of ten indicators - which is not a diagnoses for lyme, and could be a false positive) but my symptoms are typical of lyme (and if it's been untreated/undiagnosed for a long time the tests could easily be falsely negative), so next monday morning i get to go have a more accurate test for lyme including all ten factors again plus the co-infections which may tell us more definitively whether it's lyme or not (for more see http://en.wikipedia.org/wiki/Lyme_disease)

and in the meantime once i get used to the other new meds i am being put on doxycyclene and cipro because if it is lyme those should help and he'd like to start treating the potential lyme right away (if i show no improvement with the antibiotics by my november visit and the new lyme tests are negative he'll have me stop those)

if it's not lyme, it could be mercury poisoning - that's what causes my problems with seafood - i alreay have an extreme sensitivity to mercury and my levels may have gone up in the last year as he's had me start taking fish oil (supposed to be mercury free but...) so we'll test for that in early november (my next appt is end of november) and if it's mercury the damage is probably permanent, but they can do chelation therapy to stop further damage (he doesn't want to start that yet as the therapy is toxic and i'll probably wind up in hospital while it's done because my health is already so bad) more info on mercury poisoning in case you want that http://en.wikipedia.org/wiki/Mercury_poisoning

and the third possible cause for the memory problems and numbness (and that he's also treating me as if that's the cause) is the fibro itself - we had talked about this my last visit (feb?) and he added some supplements to boost brain chemistry which hasn't done anything; in february he wanted to put me on adderall as well as some fibro patients w/ memory issues respond well to that but i didn't want to go that far - adderall is a class 2 legal speed usually prescribed for severe ADHD - very addictive as well as some nasty side effects (nausea, diarrhea, vomiting, weight loss), but since the supplements didn't help i start adderall today - more info on that drug can be found at http://en.wikipedia.org/wiki/Adderall - i am really not thrilled about this one at all, but i'm willing to give it a try if it means i stop sleeping so much and it helps memory/concentration

on the bright side of things, i no longer need to take estrogen (so -1 med) and he's pulling the heparin and adding fibrinex and a different anti-yeast prescription - but + 2 more new supplements + 4 new prescriptions = 45 meds/day now (and the antibiotics? i have to take those at least 6 hours after and 3 hours before any other food/drink/med - so i get to wake up in the middle of the night to take them), and i got the flu vaccine including H1N1 in the form of the flu mist (recommended for people like me with compromised immune systems) so hopefully i won't get the flu or at least not a full-blown case this year

i hope one of these treatments for the memory problems works, and once the problem is narrowed down i'll start to get better and will be able to drop back down off some of this stuff

too many syndromes/illnesses at once = very hard to diagnose and treat - go me (this is terrifying; expect lots of short updates as new meds are added and i try to track changes)

**yes, i know i've given wikipedia articles here - they are thoroughly referenced, contain links to other sources, and imho are well written and understandable especially in comparison with many of the other articles i'm finding online
Comments 
10/1/09 21:36 (UTC)
Holy crap.

Well. I'm sure nobody reading this who loves you knows how to react either, other than to offer you all their love & support.

Speaking of support, I know when you're sleeping 18 hours a day it's hard to have the energy to do anything else, but have you found any kind of chronic illness support group in your area? I worry about you struggling with all this alone..not that you don't have Ty, & friends who love you nearby, but the input/warmth from folks who are also struggling, would that help?

Have you filed for disability? Are you getting unemployment? No word back from BC/BS? I will happily ping my friend Drew & see if there's any other clever ideas he has.

I think it's time to repost your plea for assistance. Something short, that links to your original longer post, that folks can post around again. I have a pal who's gotten good results on Twitter, I can try that. Also, in your first post, some folks complained about the PayPal button not working - if you can make sure the link is good, that will help.

I don't pray, but I'm sending you as much mojo & joss as I have to spare. I'm sorry you're dealing w/ all this.
10/1/09 21:47 (UTC)
thanks sweetie

answers (short, must eat and deal w/ some divorce stuff and DMV stuff)

unemployment - finally getting that, but it's less than 1/2 my take home was w/ cogent

disability - working on applying, but there are so many hoops to jump through it's crazy

bc/bs - they are processing claims, per the dr they have talked with the office as recently as last week; no $ yet

local groups - no, but online yes - i don't want to spend my few hours out doing chronic illness group meetings - if i get to leave the house i want it to be something i enjoy

donations - don't repost just yet? i'm ok for the moment i think; would rather ask when i'm really hurting (i knew that was coming, and set aside unemployment checks to cover it; november i may need help though)
10/1/09 22:23 (UTC)
Reading over those wikipedia entries it really sounds more like lyme disease than mercury poisoning, given the symptoms you've described. I suppose that is better but still not good. I hope something starts to work for you and they can finally nail down the problem.
10/2/09 2:08 (UTC)
If it is Lyme, then at least part of it is treatable and will most likely subside, though you might still have some of the arthritic pain, yes? If so, lets hope for that.
10/2/09 5:42 (UTC)
Geez. I am so, SO very sorry you have to go through this.

Is it bad that I'm rooting for Lyme Disease? GO LYME DISEASE GO!
10/2/09 7:05 (UTC)
thanks

i'm actually hoping it's the fibro/cfs, and that we can find the right thing(s) to control it; adding lyme to my list of illnesses is not something that seems like a good thing at all
10/2/09 21:44 (UTC)
I'm so sorry for all you are going through. I also have low thyroid, chronic fatigue, fibromyalgia, and bad sleep problems. I have been going to docs for ten years and had tons of tests and tried what seems like a million meds. I currently haven't been able to work for a year. My heart goes out to you, I know how aweful it can be. I am interested in what works for you, maybe it could work for me as well?

~Lauren
10/2/09 22:10 (UTC)
::hugs:: trying times indeed, I hope things improve soon. If you would like, I have a rather unconventional suggestion for regular exercise and can set you up with people near you (still in L.A., yes?). Remember, a positive attitude and good spirits aren't just a challenge, they are your greatest weapons in any fight.
10/2/09 22:34 (UTC)
thanks

i actually have a bowflex on my back patio, so i'm good there - workout almost every day

that's hard when i'm really sick, but i can usually manage 3 ten minute sets between runs to the bathroom (my primary and i work out together most days - is good for us both and he makes sure i don't do something i shouldn't when i'm not all there)

attitude - i try to keep mine up, but a lot of the time i'm too scared to succeed fully... writing it all down helps in a couple of ways though: in that i don't have to keep retelling the update or why i'm not working/passed out on the couch at the club/etc; it helps me keep a record of what's changed, etc (although if it's little in-day updates those go through twitter now); and lj has been my place to vent problems since i got it (it replaced my text page diary) which somehow helps me let go of it at least a little bit

now, it is friday - i need more sleep and then we go dance

hope your weekend is good and that you get your homework caught up in between the fun stuff
10/10/09 22:22 (UTC) - FWIW
Just FYI, a friend of mine had many of your same syptoms. She went through all kinds of diagnoses. At times they told her she had:
Premature menopause, CFS, fibromialgia (sp?), unspecified facial pain, Multiple Sclerosis, Lupus, Lyme Disease, nueropathy, chronic constipation, and probably others I've forgotten.
In the end it was all cause by Deproprevera. Her doctor swore that couldn't be it, but one year after her last shot all her symptoms subsided.
I don't know if you take any hormonal birth control, but if you do, you might want to come off it and see if it helps you at all.