Infectious Disease (DOC) and thats using it mildly

[navydad]

I wasent going to go since I would have to drive inti Pittsburgh and I cant deal with that and the numb feel like lead fet,, but I went in fro a 10;30 appt, wel I got there ealry,, 10;15,, 11am went by, noon,, the secretary said hes ina  meeting but should be back soon,, now i;m P****,,, get to a exam rooom,, he comes in,, hes hte most arrogent doctor on my list,, says a few things,, doest that stupid cursorary listen to my heart,, and tells me I need to go back on the antifungals,, now I had sent this guy the culture results two weeks ago,, and never heard a wrod from him,,
Then hes scrambling to get me a CT of the sinuses,, told him I had one done yesterday,, he;s flying al over the office getting the girls to call the hospital for results, why the rush now doc,, your the one who said I need to talk to a shrink,,
Fungas was Rhizopus,, nasty stuff,, I swear it wont be long before it grows out of the roof of my mouth,, they mesed around and messed around,, now I see Neuro tomorrow,, the heuropathy is on a 11 out of 10, my thoracis spine hurts across my shoulder blades and it feels like snakes are crawling under the skin of my legs and arms,, sucks

[Crabcakes]

That's horrible, Dad. I don't know at which point so many doctor's develop the "God" syndrome, but they ought to make a vaccine agaisnt it. We are feeling miserable enough without being treated like so many of these docs treat us.

[Epson]

Navydad,

I can always count on you to make me feel better about what's going on in my life, and my life sucks!

[tuckerdog]

Navydad,

Looks like you have finally found out what the slime is you have been talking about is coming from. 

Let this be a warning to all of us!!!!!!!!!!!!!!!!!!!!!

We are immunosuppressed which makes us suseptible to infectious agents.  Add brain fog to that, then go from Dr. to Dr. looking for an answer.  They blow us off as looney.  I hope now that they know what the problem is they can find a way to treat it.  You have really been through a lot.  It is a scarey tale and I am certainly going to tell all my Dr's about this one.

Tuckerdog

[irish]

navydad, This was not a good day for you!!!!It really is the pits and then some. By the way, I have always thought that you said you have primary immune deficiency or something like that. Is this true. If you do then you are at much higher risk than the average autoimmune affected person. That is why all the infections.

I know how you feel. I had a call from the doc who treated my ear infection last week. Seems I did have MRSA, yeast and another bacteria in my ear. My nickname at our house has been pus bucket for many years. Thankfully, the infections, though still coming often, are not are yukky as they were, but they still poop me out and make life miserable.

Hope that they can get this under control for you so that life is better. Also, hope they can get the neuropathy under control.We will always have doctors who are jerks!!! It comes with the territory I guess. Irish

[gurs]

I think you need to get into the hospital for some major anti-fungal treatment, like an IV of diflucan or Amphotericin B?? I would check with your doctors.

[navydad]

I think so too,, but its impossible to get my doctors to listen to anything I have to say anymore, ,,

[Patze]

Oh Navydad,

I'm so sorry to hear that this is the turkey that you're stuck with!  Where do they get these "doctors" from?  Dang! 

Do they have a special course in being the most obnoxious that they have take before graduating from med school?  Wow, when are you going to get a decent doctor?  Or at least one you can work with?

Take care Navydad, and I hope you feel better soon!

Patze

[kathyl]

How awful.  Hopefully the neurologist will give you something for the neuropathy.  When I was first diagnosed that was one of my first symptoms and it was horrible.  So I know how that feels.  I didn't sleep for weeks more than an hour or two a night.  I wore gloves to bed to keep from scraping my skin off.  Are you taking anything at all for it?  I take neurontin and am up to 2100 mg a day plus at night I take clonazepam (Klonopin) and it makes me fall into a deep sleep so I don't feel anything.  I find that the neuropathy is the worst thing and with that under control I can function - kind of - I have memory problems and confusion sometimes but the pain is worse and I would rather forget someone's name than deal with the pain.  Have you seen a neurologist before?  They can be a little arrogant so I hope you get a nice one.  I had to go through several.  I've tried other meds too.  Cymbalta worked well but I was allergic to it and Lyrica did nothing.  But I feel that I am on the right medications now and as long as I don't get overheated I can deal.  Good luck to you and please post on how the neurology appointment goes.
KL

[SassieCat]

NavyDad,

Wow, they really have dragged their feet.  I am glad that they have an idea in their small brains other than "it's in your head because there's nothing in mine about it."   Really now, why would anyone even want to make this kind of stuff up? 

Hope you get to see a good neuro and that they can help you.  You've been though enough and it's time for a break my friend.