Infection/ bad flare?!

[Kathy57]

hello to my "Sjogren's family"

Since I've come back from my son's wedding I have felt pretty awful.  Actually, I started feeling bad on the way down and my doctor was good enough to order a Z pack for me which helped, some.

I've had terrible sinus issues for over a year now with a totally disastrous surgery adding more misery than I can put into words.  Even on my best days I cough way too much in the mornings with way too much drainage/ disgusting phlegm.  (Sorry).

I've been complaining about this since after December.  I've been on antibiotics twice and short burst of prednisone since December.  My regular doc ordered a different nasal steroid and wants to see me in a month.  (I've been in multiple nasal steroids with no real relief.)

I'm so fatigued that I haven't done anything for a week.  No voice with terrible cough/ drainage despite the Z- pack that was ordered for me.  I hardly speak to save my voice and it's not getting any better!  All this resting and I still feel exhausted every day.

This Friday I had a regularly scheduled appointment with my University of Iowa ENT.  My husband drove me which was nice.  It took a lot of energy from me just to get there and back!

I'm so glad I went cause he did a very thorough in depth exam with the nasal endoscopy thing.  (I think that's what you call it?)

He said I had a very deep infection with lots of  inflammation (which I knew!!). I told him it was chronic and I would love to get some relief!  Getting pretty darn sick of it.  He took deep nasal cultures and is testing for everything!

He told me he would call in three days with results and a more sensitive med.  he also told me he would want me to take it for at least three weeks.

He decided that I've had too many infections for the last year and is referring me to a University Immunologist.  I forgot to ask for prednisone but maybe I'll ask Monday when he calls me back?
Do you think that is a good idea?

He said that many times people with autoimmune issues have immune issues.  I know someone can help to explain this better for me.  What tests will the immunologist do that my Rheumatologist has not done?

I'm nervous about this.  I want to feel better but am hoping that it isn't too serious.  I'm thinking this is just a good precautionary measure?

I'm glad I saw this man because he is so smart and actually is taking me more seriously than my local docs (who, I sometimes think don't know what to do for me.)

I wish I would have seen this man instead of the local ENT who I feel has  left me "sinus disabled" last year after his disastrous surgery and poor treatment. 

I know my problems are small compared to so many others.  Any advice or comments would be more than welcome.
Wishing everyone a good Memorial Day holiday!

Kathy

[irish]

Kathy, I am so glad that you got a good doc who took the time to look ad see what is going on. I will tell you that an immunologist is really, really a doc that should be able to help. There are not very many of them and I think it is because it is a really hard and complicated medical specialty. Immunologist treat autoimmune diseases, immune deficiencies and allergies. All of these issues are intertwined and take a lot of thinking and assessing to work out a treatment plan. This is generally much more complicated stuff than the average doc is trained to deal with.

Don't be surprised if you would have to have IV antibiotics because your infection sounds rather in depth and usually the oral AB don't cure those infections. I am now dealing with the MRSA or resistant staff infection and I have had it quite a few times over the years as I also have low t-cells and have trouble fighting off infections. My immunologist and ENT work together and sent me to my infectious disease doc for an assessment. This is another branch of medicine that is extremely complicated. I would not be surprised if they put me on some IV meds this time. These infections are really a bugger and wear a person out.

My immunologist diagnosed me with the severalty low t-cells and I have been fighting infections for many, many years. It is some better than it used to be because of the IVIG that I take for my myasthenia gravis. Also, prednisone is not the best thing to take either as it can cause people to get infections more often. I have been on prednisone for years and trying to taper off again. I know that it has not helps my infections but we have issues that are double edged swords.

I hope that they can get this resolved so you can go back to living a half way normal life. I can understand what you are dealing with cause I have had many, many infections in my throat and ddown deepers plus abscesses in the throat and infections in the salivary glands. Sort of a vicious circle for me. My nick name over the years has been "pus bucket". Thankfully my family has been understanding and I keep them away when I am in the midst of a bad infection. Good luck. Irish

P.S. Years ago I had a deviated septum and turbinotomy when I was a long way from being diagnosed with the myasthenia or the low t-cells. I got a horrible infection and I think that is probably the beginning of the MRSA. Nobody's fault, it just happened.

[Kathy57]

Irish,

Thanks for your response.  You know, I never thought about MRSA.  With my luck I probably have it!

Well, it is best to know!  I'm really glad now that I kept my appointment.  (Sometimes I think most of my appointments are half way useless and not worth my time.)

I should be able to get my results this Monday, but I realize it is Memorial Day so that's probably a big NO.

The office said that it might take me awhile to get into Immunology because they are busy.  Better late than never!

I'll keep u posted on what I find out.  I remember when I was younger and my immune system seemed as strong as a tank!  Those days are gone.😩👎

Thanks so much for reminding me that I am never alone with these issues.

Kathy

[Kathy57]

Irish,

I received a phone call today from U of I and my culture came back Staph but I don't have MRSA!  Yea!!!!  They are going to put me on three weeks of Augmenton.  I asked for Diflucan prescription with because we all know what three weeks of strong antibiotic will do!

I'm relieved not to have MRSA, but I haven't been contacted by Immunology yet.  Hoping I can start to feel better cause this constant infection is a drag!!!!

Thanks for your input.  I will keep u posted.

Kathy

[irish]

Kathy, Do glad that you don't have MRSA and it is a plus that you are able to take penicillin. I am allergic to penicillins and amoxicillin, etc plus the Bactrim that is used to treat the MRSA so my medication options are very limited.

Hope you get cured with this med and get feeling better soon. Irish