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Sjogrens Topics => Living With Sjogren's => Topic started by: irish on May 05, 2008, 11:48:23 PM

Title: Same old infections again!!!
Post by: irish on May 05, 2008, 11:48:23 PM
Well, I have been feeling yukky for a long time and never know what is going on with me anymore.  I think that after I saw my NP in immunology for my 6 month check up that I started to feel worse. I kept thinking it was yeast as I could always see signs in my mouth off and on. I finally got a sputum culture that was not large enough and had no important growth.

Last week I was able to get a good culture and today doc called with the results. I grew out MRSA again(not a large amount) plus a significant amount of gram negative cocci. He said that in normal people they often didn't treat either of these because they could culture again and not grow them. I told him that I had felt so lousy for so long with many increasing symptoms that I knew that I needed treatment.

I had just finished several 7 day series of cipro for my toe infection plus I am currently on Diflucan for my yeast. Sooo, back to the pharmacy for my doxycycline to be taken for 2 weeks. I see Oral Maxillary on Thursday so maybe I can get some information that may shed some light on this. I often think that I have a sinus tract that is causing me to have trapped bacteria that show up when I get more run down---as if that is possible. Then I have IVIG on the 14th so will talk to them. See immunologist again first of June. They have changed me to a every 4 month appointment because of my condition I guess!!! Whatever that means, I have trouble keeping up with it anymore. If I didn't write all this stuff on my calendar I wouldn't know if I was coming or going.

Hope you all were able to enjoy the sunshine today. As yukky as I felt I had to go to the bank, pay the taxes(yuck) go to Walmart(yeah!!!!) and to the grocery store. I was down for the count by the time I got home. But I got some sunshine. Irish ;D
Title: Re: Same old infections again!!!
Post by: Scottietottie on May 06, 2008, 08:36:30 AM
Aw Irish - I'm sorry you're feeling rough again. You could do with a break!  It seems to be one thing after another. I wonder if the sunshine will help or hinder? At least sunshine looks good!

Take care - Scottie  :)
Title: Re: Same old infections again!!!
Post by: Linda196 on May 06, 2008, 09:40:40 AM
Oh Irish, I'm with definitely deserve a break. Too bad they can't come up with a one time antibiotic bomb that would wipe out all the bad bacteria in your system, and let your immune system start over from scratch!
Title: Re: Same old infections again!!!
Post by: Pooh on May 06, 2008, 11:30:05 AM
Holy cow Irish!  I wish you would learn to duck when these infections come by. ;D  I'm so sorry to hear they got you down for the count again. 

I'm very glad you managed to get some sunshine yesterday, somehow it does make you feel human again.  I'm recovering today from a day trip with my daughter and my friend yesterday.  But it was so worth it. ;D  Beautiful day, wonderful company and lots of shopping.  What more could I ask for? 

Take care and I hope the dox does the trick and you get rid of this latest infection.

Hugs, Pooh
Title: Re: Same old infections again!!!
Post by: irish on May 06, 2008, 11:40:10 AM
I swear that I am harboring these bacteria in my nasal pharynx and have wondered it it could have started following one of my surgeries. I remember having a very large mucus plug that I coughed out about a month following this surgery. As I look back I wonder if this was the start of these particular issues. The symptoms are the same all the time.

I am going to pursue this. I don't know if there is much they can do for me with my low t-cells, but I really feel rotten this time. Fatigue that doesn't let up and weakness plus all the usual mucus etc. Have to admit it is getting me down. I even wonder sometimes if a PIC line would even cure me!!! If I got rid of these infections I know that I would feel a lot better. The myasthenia and sjogrens are one thing but these infections are what really get me down. We have a thunderstorm watch out---so much for the sunshine. Irish ;D
Title: Re: Same old infections again!!!
Post by: Pooh on May 06, 2008, 03:37:38 PM
Take care dear, and rest when you can.  I hope they figure out what it is and evict it completely.  :(  I too think you have had more than your share for the past couple years.

Hang in there and keep pestering those docs to get off their collective butts and find out what is causing this infection.

Hugs, Pooh
Title: Re: Same old infections again!!!
Post by: wordnerd on May 07, 2008, 11:02:31 PM
Awww Irish... I'm sorry you're feeling so crummy!  I hope they figure it out quickly!  Take care of yourself.

Title: Re: Same old infections again!!!
Post by: LenV on May 08, 2008, 07:21:41 PM
Oh no Irish!!!

Not again.  I sure hope they can stop it fast this time.  It's just not fair that you have to suffer all the time.

Title: Re: Same old infections again!!!
Post by: Annj5 on May 08, 2008, 08:15:17 PM
Hi irish,

You know how you can tell how someone is feeling by the tone of their voice? Well, you haven't "sounded" like yourself for the last week, and now we know why! Here's a hug, and hope you're back to your spunky sweet self again soon!

Title: Re: Same old infections again!!!
Post by: irish on May 08, 2008, 08:20:53 PM
Well that was a useless doctors visit. I don't know what goes on with these docs. Looked so concerned etc last week and this week more or less read the CT scans and looked in my mouth and felt around and said it all looked normal.

I told him that I had taken another sputum culture in and was on antibiotics and that my hard palate and left side of my face was feeling better. However, I still feel like I have a lump of infection that needs to be hacked out. Talked about history of MRSA and all the infections I have had.

At one point I told him I was concerned about taking antibiotics as I am allergic to so many and worry about running out of antibiotics that will work. He said just don't take the antibiotic. I just looked at him and told him that I was sick--had lost 8 pounds, nausea, fatigue, chills, etc. and that is why I had to take the antibiotic. I didn't get to tell him that it took me about 2 months to get this down again. Sometimes I can't tell what is going on and then all of a sudden I decide that it has to be another infection.

I also talked about my myasthenia and the breathing issues etc and he said"that must be stressful". He said that several times about some symptoms I have and I just looked at him and said "yes, it is stressful". I have no clue what was going through his head and I just couldn't wrap myself around the direction to take the conversation. I have decided that as a nurse I am better at assessing patients and asking questions than I am at being a patient trying to get my point across. The trouble is that doctors don't often ask questions. Too often we make an important statement that needs to be explored and the conversation gets diverted and the doc has not pursued things that are important. Sheeesh.

Thankfully I have appointment with immunologist in June again and do my IVIG next week so can talk to the nurses some. Irish ;D

P.S. Ohh, and after he looked in my mouth he asked me how they had diagnosed my Sjogrens. I told them lip biopsy and positive blood work in a Sjogrens study. I am thinking he thought my mucus membranes didn't look dry. I had just taken a Mestinon for my myasthenia gravis which also produces some extra mucus but not at all like salogen plus I had been sipping on water in his office.
Title: Re: Same old infections again!!!
Post by: ktfabian on May 08, 2008, 08:51:33 PM

I'm so sorry you're sick again (still?).  And I'm sorry today's doctor's visit seemed a waste of time.  I get so angry when that happens. 

I've been trying to get into my GP for almost 2 weeks and can't get an appointment. I also can't seem to get a call back from my rheumatologist, so rather than sit here and let the arthrotec eat through my stomach (that's what it felt like anyway) I've finally made some medication switches on my own.  Can I submit a bill to my insurance for my consultation and prescription decisions?

I don't think many doctors realize how well you get to know your own body when you have a disease like this and others that go along with it.  When we start to tell them more than they think we should know, they shut us down.  VERY annoying.

I hope the immunologist can give you a better answer on the 6th.  A PICC line might be a very good answer.  Finally put you on the heavy hitters (vancomycin?) and let it run for 6 weeks or more.  Maybe, then, this bug that just keeps on giving would finally get lost.

Try to take care and I really hope you're feeling better soon,
Title: Re: Same old infections again!!!
Post by: wordnerd on May 08, 2008, 10:36:54 PM
The trouble is that doctors don't often ask questions.

Wow Irish, you really hit the nail on the head with that one.  I don't know what's wrong with most doctors.  Its like the expect the patients to have a medical degree so that they know what info to mention that is relevant.  But of course if we don't have a medical degree we can only report things that we think are significant and risk having something important be missed or we can mention every little problem we're having and then get offered antidepressants because we obviously make a big deal out of little things.

I feel like doctors should go through a basic set of questions every visit.  And if you mention something that seems important they should ask you more questions to figure out what's going on.  But apparently the differential diagnosis approach is going out of style.

I have only one doctor who does things this way.  My psychiatrist.  He asks the same questions every visit.  He also does this crazy unheard of thing where he explains what he thinks is going on and why and why he is choosing what med and how it works and what I should expect from it.  Before he was a psychiatrist he was a pediatrician.  And whenever I'm having an issue with another doctor I feel fortunate to have him to ask for advice on how to deal with it.  He was the first and only doctor who never questioned that I had an autoimmune disease and had a real appreciation of how hard it is to deal with trying to get a diagnosis.  Turns out his wife has RA which explains a lot.  (If anyone lives in Southern California and needs a good psychiatrist feel free to PM me.)

But I digress (what else is new).  I also like it when doctors have fellows that they send in ahead to ask you a million questions and take a very thorough history.

Anyway, Irish, I'm so sorry you're having to deal with this kind of stuff from your doctors when you already don't feel well.  I'm sure its extra stress that you just don't need.  I hope your immunologist can help you more.  If you do go back to this doctor you might want to try something my Psychiatrist told me to do when I wasn't getting what I needed out of a doctors visit.  He said to say something to the affect that you trust his judgment and value is opinion but it would really help you feel more comfortable that you are doing the right thing if he could explain his though process behind telling you to stop taking the antibiotic.

I hope you feel better soon!  Take care!