Straight From The Source...update From The Fishbowl

[Sunfish]

okey dokey....the fishy is starting to float in her bowl a bit better at the moment. still pretty wrung out but today is the first day i haven't had a fever AT ALL since last saturday. yesterday it was much better so hopefully we're heading in the right direction. i honestly don't even know how i managed to post earlier in the week b/c i was not doing so hot (or rather i was doing too hot....except for when i had the chills ).

pretty much every substance of my body that we could gather has been cultured multiple times this week and no infection anywhere. so...the bottom line...i've been having a rare (i.e. melissa) reaction to the vancomycin (IV antibiotic) and/or the lovenox (anti-clotting injections) that i've been giving myself. the lovenox stopped on wednesday morning & we stopped the vanco a day early (yesterday instead of today) so by now the lovenox should be out of my system & the vanco should be out by sunday night. b/c i'm feeling so much better already we're leaning toward it being the lovenox. ah joy. luckily i don't need the injections now as my coumadin levels (INR/PT) are where they need to be.

real quick to clarify though....the IVIG treatment(s) i'm getting have NOTHING to do with the suspected mitochondrial disease. the docs think i have two separate things going on...both mito disease & an autoimmune process that has been/is causing the progressive neuropathy/ autonomic failure. i think em actually tried (and did a pretty darn good job) explaining this while i was in the hospital last time. i'm sure i'm rambled about it in more detail at other times too but bottom line is the IVIG isn't for the mito disease but a suspected autoimmune process. IVIG is often used in certain autoimmune diseases/ progressive neuropathies.

so...i'm still in my own fishbowl and if i stay fever-free through the weekend (PRETTY PLEASE!!?) then i'll be cleared by the doc for IVIG on monday. my mom & i give my PCP a lot of credit for keeping tabs on me this past week without sticking me in the hospital. but...getting the medical clearance doesn't mean i'll get the IVIG on monday b/c the scheduling nightmare begins again. and home health care pretty much has already told me thy don't think it can happen. so either the hospital or perhaps an outpatient infusion center still loom. gggggggggrrrrrrrrrrr.

and for whoever asked, i definitely haven't noticed anything from the first IVIG treatment at this point. not that i'd even be able to tell with everything else....but it wasn't really expected to help - if it's going to - until after 2-3 treatments or so. i'm essentially being used (willingly) as a guinea pig b/c there's no real precedent.

oh...and for all those who commented on the crazy resident in the hospital, you can be certain that we followed up on it (the next day, while we were still there.) my dad works in health care administration himself so he was a good one to have with me, and the good response i spoke of was in reference to how everyone responded to the nuttiness that occurred. all in all we've still been pleased with the hospital and their response affirmed that.

okay....hopefully on the upswing now to stay....none of this feeling a bit better for two days then back into the pit stuff. it's for the birds.

melissa

[corina]

melissa!!!!!

it's great to hear from you!!!! and that you're in an upswing AND TO STAY (let's hope).

corina

[Dizzy Dame]

I'm so glad to hear your fever's breaking Melissa! Hopefully you'll be able to get an at-home nurse for your next IVIG infusion...and hopefully you'll start to see some benefits soon

[Sue]

Melissa,

Glad to see you are starting to move around the fishbowl!! I too have had more bad experiences at the hospital than good. Now my husband will not leave my side when I have to go. If they tell him to leave the room he always says its my right to have him there and he's not leaving!!

Hope you keep feeling better

Sue

[DancingLight]

Hi!

Glad you were able to report in! Since I wasn't doing a very good job keeping up on the 'fish bubbles' as Nina so cleverly put it! I do have my computer back now though!

Did you have a fever-free day today???? I am keeping my fingers crossed. I like the i.e. Melissa reaction. That is classic.

Also, thanks for saying I did a good job on explaining the IVIG and all that jazz! I try!

Okay, Asher is puking. Great. Oh the joys of my dog!

Goodnight my dear!

Em

[AJVDK]

I am glad you are starting to feel better. I hope yo are able to find someone to do the treaments out of your home that would be great. I will be thinking able you!

[Beccapooh]

Hi Y'all! Sorry that I must of missed what the whole IVIG treatment was about/for. I've been dealing with my own stuff and must have missed some postings (or maybe even read them, and then forgot....LOL, who knows, huh?).

I only asked because I was given IVIG treatment when they thought that I had MG. Turns out that I don't "officially" have MG, due to not testing positive for the anti-bodies. (Even though, I've been told that not everyone does test positive for them.......oh well!!) Anyway, WHATEVER I DO have, did seem to respond well to the treatment. That is, after I got super sick from it!!! I was just curious, if maybe you had also gotten ill from the actual treatment itself. I got aseptic menangitis and ran a really high fever, etc. much like you did and they couldn't find an "infection" either. It was just my bodies lovely reaction to the treatment. (I think that you and I seem to have that in common!!! UGH!!)

At any rate, I'm just super curious as to why the IVIG treatment worked for me if I don't have Myasthenia Gravis? No one seems to be able to give me a straight answer, but, I AM learning, that IVIG treatments seem to be given for a lot of things, not just MG. (I was told that MG was very nearly the only thing that the treatment is given for anymore. **This was probably most certainly mis-information, relayed to me by one or more of my mis-informed doctors!****

I'm glad that you're feeling better, no matter WHY you're feeling better!!!! Take it slow and take good, good care of yourself as I'm sure you already do!!!

Bec

[Sunfish]

rebecca et al -

my fevers/ being sick had nothing to do with the IVIG treatments as it was an entire month after. during the treatments i had headaches & crazier than normal HR/BP fluctuations but they stopped when the treatments stopped. it was almost a month later that i was hospitalized and that was for a central line infection & blood clots (related to the central line). after that the fevers were from a reaction to one of the medications i was put on for the clots.

i haven't noticed anything - good or bad - from my initial IVIG treatments and will be having the second round this week....probably at home. (yippee!!) in terms of my feeling "better" i'm only referring to post-infection, clots, etc. i haven't felt any overall improvement at all and am in fact still pretty wrung out from the past few weeks (not the IVIG but everything else)....so at this point i'm still working on getting back to my baseline, which is nothing spectacular (i.e. a 45 second walk).

you are correct though in thinking you were misinformed about IVIG being used for only MG. it is used for immune deficiencies (in smaller doses, as a replacement of sorts) and in MANY different autoimmune conditions (to in essence "crowd out" the unwanted antibodies).

melissa

[dizzygirl]

melissa glad that you arent running a feer right now!! that is an improvement! I'm glad that you are feeling a bit better as well.. you hang (or swim i should say) in there melissa

BIG HUGS