Strange symptoms--why??

[irish]

Thanks again for all your well wishes and prayers. Yes, I do have people I see---one son and family lives next door to me out here in the country and another son lives in town. I signal every morning that I am alive and kicking by opening my drapes. If the drapes don't open by a certain time son knows to come and check on me.

The grandkids come and see me on occasion and when I am up to it I make the trip to town to pick them up from school,etc. I do sit a lot these past several months and I dose off a lot. I am feeling some better since being on the doxycycline and the swelling in my neck, throat and nose are feeling less. I hope something shows up on the ct scan. I have had so many scans and other weird tests over the years and they can't find the infection that I get.

I will wretch and gag out the pus and then it is too late to catch it on film. This has been something I have had for years and is getting worse and changing. Can't see a darn thing when you scope my throat. I do think that it is related to all the dental infections I had years ago and also doesn't get really bad because I get put on the antibiotics so fast when I don't feel good. Having the IVIG probably helps to keep this infection at bay also.

This has been a complicated issue and with the autoimmune it is hard to know what is what---as if we don't all know that!!! Years ago I had to much MRSA and at one point I disinfected a very small jack knife and got the stuff I needed to do a trach on myself. I was having times when my throat would swell and I would have stridor or a deep rattle in my throat when I breathed. I could tell that I was starting to obstruct in my airway. I told my hubby that if I got in trouble the ambulance would not make it out here soon enough and I would go into respiratory arrest aqnd die or have brain damage.

I looked up what I needed to know to refresh myself on doing a trach and figured I would do it if I had to. It only hurts for a little while!!! I had one time where I went to ER because of this and they sent me home. Couldn't see anything and I didn't look sick. I wasn't home 1/2 hour when I was hanging in the sink wretching out all this infected stuff that turned out to be MRSA again.

It took me a couple of days to get back to the clinic to get cultured and the doc asked me why I didn't come in right away. I looked at her and told her "why should I no one doesn't anything anyway". You should have seen the look on her face. Isn't that sort of the way it is with autoimmune issue and complications. Pardon me for rambling on again. Take care all. Hugs. Irish

[Sleepy In Seattle]

...at one point I disinfected a very small jack knife and got the stuff I needed to do a trach on myself...I looked up what I needed to know to refresh myself on doing a trach and figured I would do it if I had to. It only hurts for a little while!!!

Girl - you are H.A.R.D.  C.O.R.E.  !!!!!!!!!!   

That is some serious survivor stuff. That kind of grit will carry you through a lot. 
Here's hoping you won't need it!

[cactus]

So sorry to hear of your loss and what you're going through and big hugs. All I can think of is to really look after yourself - good food, rest and whatever exercise you can manage. Stress is a big bringer on of symptoms for me too. I have kept a symptoms diary since 2009 (the year my mum died) and my symptoms were sky high then with all the stress.It was a terrible year anyway so when she died I was at my lowest ever. Slowly year by year my symptoms have gone down to a quarter of what they were. I think when things are bad its time to pamper yourself, plan to make things easier for the future and not feel guilty to ask for help. I know my situation doesn't compare to yours but I hope you feel better soon. 

[irish]

Well, the culture and sensitivity came back MRSA and the doc's nurse called this morning as doc wants to put me on Linzeolin for the MRSA. Really, Really expensive and can be a little hard on ones body.

I have a call into Immunology and had to have doc fax them the lab results. I emailed my doc and let her know that I have been checking on a lot of options and trying to come to a decision that is best in the long haul and for quality of life. This will be an interesting time again. I will have to make sure that I can get the care I need if I am not able to do much for myself during this therapy. Time will tell. Stay tuned for the next episode.

Thank goodness NCIS is on cause that distracts me and keeps me sane. Irish

[Carolina]

MRSA

http://www.mayoclinic.org/diseases-conditions/mrsa/basics/definition/con-20024479

Oh Irish.  You seem so calm.  Have you had this before?  No wonder it hasn't gotten better! 

It would be good if you could be in some sort of assisted living or nursing facility.  Can you have a nurse come in to manage the IV of the antibiotics?

You are so calm.

Hugs,  Elaine

[irish]

I have had MRSA many times and I think it has taken up residence in my nasopharynx, throat, neck for the past 20 years or so. I have had so many infections and don't always culture out MRSA, But I know it is still there hiding.

I have had so many symptoms that are so weird and hard to explain and I have always felt deep in my gut that I had an infection down deep. I am so surprised that it has not spread to my brain cause it is so close to dangerous areas.

My ENT has cultured me and scoped me int he office many times. He has done 3 scopings in OR under anesthesia so that he could acess everything and he could not find anything. But, I will get these strange infections and wretch and gag and out stuff comes and the doctors have missed it all and I didn't get a sample causer I had no clue there wad anything to come out.

The number of scans and other tests my ENT has done is a lot---he really gets discouraged cause I am a patient he can't fix and I have gone to him since 1997. The doctors can't get aggressive when they have nothng to back up what I say is happening. Some positive cultures but mostly happens later at night. I have told my ENT I was going to come and live with him until he got to see what I go through at night. He just laughs.

The only thing I can do is to plan this out so that it works out cause none of my kids need me to be down and out sick right now as lots of heavy stuff going on in their lives. Time will tell how this plays out. I am just thankful that the doxycycline is helping and I feel some better. I know that I have been worse this time and it is time to pursue more aggressive treatment.

Immunologist is conservative and has not wanted to rush into anything as I have so many allergies, and doesn't wasn't to upset the apple cart with so little documentation. I am thankful for him being conservative cause I don't like to rush into things if I can help it. Thanks for the input folks. Irish

[susanep]

Irish I am glad the doxy helps some. I hope by some miracle they get this under control for you this time. Bless your heart. You so deserve a break.

susanep

[Carolina]

Dearest Angel Irish,

You know, I was thinking.  The diagnosis is actually a GOOD thing. You KNEW you were sick, and yet it went on and on and wasn't diagnosed. 

And the infection was dragging you down at a time when you are already hit by so many things, including the falls.

So you have the important validation that your perceptions were correct, and now you can GET BETTER!

Thank you for reminding all of us that we can trust our sense about our bodies, that in spite of everything we can PERSIST in seeking solutions even when it seems overwhelming.

Rest rest rest and recover. 

Hugs and love, Elaine

[irish]

Well, I got a call back from my immunologist today. He had gotten the faxed culture and sensitivity from my clinic down here. He wants me to stay on the doxycycline for a couple of months. He says that I will never get rid of it because of my low t-cells. He wants to avoid using the Linezolid in case I ever have a really bad MRSA infection. So that is the good news for the day. I'm all for this plan of action. Let's keep it simple until it gets not so simple. Yeah!!!!! Irish

[mistyrain]

Irish: your Immunologist sounds very smart with a bit of clear thinking and following through.  That will put your mind at rest on how you must proceed along with all the understanding you have of the situation.  I hope each day things are better for you.  cheers!

[susanep]

Irish glad to hear the simple first for you, before anything gets more complicated.

[MarieB]

Hi Irish,

I just want to say that I care and I'm sending all the good positive vibes I have that the doxcycline does the trick. 

Take care, hope you get some rest and hope the healing starts.

Marie

[LucyD]

Hi Irish,
I am late replying. Boy, you do have grit! Just wanted to say how very sorry I am that you must deal with ALL of this - the "chronic?" MRSA, the compromised immune function, the autoimmune, the lupus symptoms, the stress and grief of losing your husband - and on.
Wanted to send hugs and love.
You are an inspiration and you are amazing.
In your initial post you had mentioned how badly you ached. When I have an infection (viral or bacterial, but especially viral) I ACHE all over so much worse than the usual autoimmune joint pain.
Loving wishes for full healing.
lucyd