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View Full Version : New to this board, but not to autoimmune disease...



chichibug
05-02-2007, 02:54 PM
Hello All,

I wanted to introduce myself--I have had Lupus/Autoimmune Vasculitis/IBD, etc for 6 years (diagnosed) now. To make the party even more fun, I have atypical sinus tachycardia, corresponding labile blood pressure, and periodic spells of heart failure. I have had more surgeries than anyone I know (and I'm only 39)... such as 3 heart surgeries, hysterectomy, abdominal abscess/appendix/ovary removed, sinus surgery x3 (so far)... I take Plaquenil, Doxepin, Vytorin, and various pain meds on a daily basis, plus the routine rounds of Prednisone and antibiotics. I try to avoid the doctor when I can, as it seems that there's nothing that can be done to help my situation at all anyway. Most of the time I can totally handle things, and usually people can't tell that I'm sick. (Well, except my husband and kids... they always know... even if I don't tell them...) Until these past few months... but I'll get to that in a bit.

I try to keep a great attitude, give everyone a big heartfelt smile, and all of my gusto for life. I want to 'do' everything, 'see' everything, and 'experience' everything. I have been blessed to do many things in my life, from being an L&D coach for women in the military, showing horses at national competitions, breeding horses (delivering foals), breeding and showing conformation beagles, flying aerobatic planes (well, as a passenger, but it's FUN!), etc... I have two terrific kids (19 and 17) who are extremely accomplished and at the tops of their classes (2nd year Engineering student and the other graduating High School in a few weeks to go on to the University and Law School), an awesome supersmart husband, and a wonderful LIFE. This is what I focus on, this is what makes me "ME".

So, I hope to be able to input some support here, as well as learn about this Lupus-thang (since I have tried to just not acknowledge it at all, but try to 'get above the pain'). The triggering factor for me coming here is that I am getting to my wit's end... I have no idea what is going on with me, but back in October I was dx'ed with an abscess in my R maxillary sinus. Okay--so I had surgery and it was 'fixed' and then within a few weeks, was reinfected. Okay... so in March (after many 'rounds of antibiotics which did nothing) I had another sinus surgery. And reinfected by April. I have had 3 'rounds of antibiotics since, and nothing helps. I have NO idea what this doctor is going to do. He says it's too soon for another surgery (and what good would it do anyway???) but seems to just throw his hands into the air like he's giving up. This infection is not going away, and my head spins and hurts all of the time. The antibiotics were starting to have some nasty side effects on me, so I'm not apt to try them again. What can I do? Any ideas? I see my rheumatologist tomorrow, but I have a feeling he's going to be at a loss, too.

I just bought an infrared sauna (should be delivered in 3 weeks or so)... has anyone had any success with this type of thing? Also, my husband wants me to call Len and Joe (on the radio)... has anyone called there before?

Thanks for everything.

MARYCAIN
05-02-2007, 03:08 PM
I don't have time to type much right now, but I would really suggest a consultation with an infectious disease specialist, if you haven't already seen one. The combination of autoimmune disease and prednisone makes people really vulnerable to unusual and opportunistic infections that can't always be treated successfully with standard antibiotics. So it would be helpful to see an ID specialist to rule out a fungal infection or something else contributing to your sinus problems. The ID specialists are also more familiar with which antibiotics are most effective for which bugs. If you've had three rounds of antibiotics that haven't helped, chances are that whatever you have is either not bacterial, or is a bacteria resistant to the antibiotics you are taking. So someone who specializes in those problems might be more helpful to you than an ENT or a GP.

chichibug
05-02-2007, 03:15 PM
That's amazing...

While I was talking to my husband on the phone, your message popped up... right as he was saying I should call UCLA Medical Center and find an Infectious Disease doc... <twilight zone music plays here>

How do I find one that is reputable? I was thinking of asking my rheumy tomorrow... Also, I am one to really protect people's feelings... I don't want to alienate or upset my ENT surgeon... is this crossing the boundary? Should I leave it up to him? I did leave him a message this morning that I'm "giving up" and "don't bother calling back because there's nothing we can do anyway"... I was feeling rather depressed and UNhopeful...

I hesitate to call a new doc because I always feel like "someone else has it so much worse" or "I should let this ride and see what happens"... along with that "I don't want to hurt the feelings of the doc that's trying to treat me"... My husband says that I'm going to worry about other people to my own demise.

Thanks for your reply...

MARYCAIN
05-02-2007, 03:23 PM
Most infectious disease specialists require a referral from another doctor, so you will probably need to go through your rheumie for the first appointment. I call my ID doc directly now, but only because I've seen him so many times that he is like one of my regular specialists. Most doctors understand the need for a second opinion and are willing to make a referral, especially when a patient has a chronic condition that needs specialized care.