alumiere (alumiere) wrote,
alumiere
alumiere

doctor's appointment yesterday

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
Tags: medical
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