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Sjogrens Topics => Living With Sjogren's => Topic started by: irish on October 07, 2008, 10:36:52 PM

Title: Another infection!!!
Post by: irish on October 07, 2008, 10:36:52 PM
Well gang, I have not kept you updated on my infections but I have continued to have them. I was on antibiotic earlier in the year but can't remember that far back. I do know that I had antibiotic in May for Culture of staph from my sputum. I had a really gross sinus infection in July and was on Biaxin. I just never felt really very well but just thought it was from the horrible heat and humidity and being overtired from company.

Anyway, the past month I thought I had yeast coming off and on and had a weird raw throat and increased mucus. Well about 1 1/2 weeks ago it got worse and I just put off going to the doc cause I knew I had my infusion the 1st of Oct and would take a sputum spec along. I ended up in urgent care on Friday the 3rd and talked with my immunologist on Saturday. Today I got a call telling me that I had Klebisella which is another one of those rotten infections that can serious and sort of hang around hospitals etc. Having the low immune system makes me very vulnerable. I am on Cipro and hope that it works.

I was really sick with this one as far as the mucus goes as it went into my throat so much that I felt like I couldn't swollow at times plus it also is in my bronchioles plus my salivary glands. Sooo, I am discouraged tonight as I have been sitting around since last week unable to do anything much. A load of clothes here and there and cook, but that is about it. The bad thing about this is that my hinder is getting fatter all the time. Also, I miss working outside on these nice fall days and I miss being up and about and cleaning house on these cool, rainy, fall days. Fall is my favorite time of the year.

The good thing is that my iimmune system is working some and I know that the infusions help as I don't seem to usually get as sick when the infections come. The hard thing is to get to the doctor without delay as per my immunologist. I have a tendency to downplay my symptoms and wait too long before I go to the doc.Not a very bright thing to do but hope springs eternal and I always think that I will get better.

Also, these doctors just can drive a person crazy. I got a new  PCP about 1 1/2 years ago and I am not happy with him. I think he is dumb. It didn't take me long to come to this conclusion but I kept giving him another chance. He really has been ticking me off though. He insisted that he knew about Sjogrens and understood the t cell deficiency etc. He is good about doing the blood work etc when I call and tell him that my Immunologist wants such and such done. But, this last May when I had the MRSA(few bacteria) on culture he wasn't going to treat me as he says that is not uncommon. I told hiim that I did not feel good and finally got a script. He treated me for 2 weeks and my Immunologist told me later that I should have been treated for 3 weeks.

In August I had another culture and awaited results and finally got a letter telling me that culture was negative. When I went in for a visit he proceeded to tell me that I grew out MRSA again. My immunologist was not happy. The other thing that really takes the cake is that he has never felt of my salivary glands and didn't talked himself out of doing a breast exam on me before he did a mammogram. He just is lazy. Thankfully, I do have another doc in my own town who consented to take me and he is really nice and is a good doc. Problem is if I have to be hospitalized I will have to go back to the bigger clinic as I will have to be near my neurologist so she can watch my Myasthenia gravis.

There, that is my story. So, I did not get anything accomplished this summer except go to the doctor and have company for 5 weeks. Also, my hubby is having issues with his blood pressure and his atrial fib and that is more docs appt. Heck, I think we should all get a job doing light cleaning in the doctors waiting room. Take care all. Irish
Title: Re: Another infection!!!
Post by: Reenie on October 07, 2008, 11:46:11 PM

I'm so sorry to hear that your battles with infections continue.  I will hope and pray that the Cipro knocks those bugs on their behinds!!

I'm glad to hear that you are going to get a new PCP, and I will cross my fingers that he will be a keeper. Your last one is sooooo fired!  You deserve the best care that is available, and the prior PCP doesn't seem to fit that bill.

You will be in my thoughts and prayers. 

Big hugs to you,
Title: Re: Another infection!!!
Post by: Patze on October 08, 2008, 04:20:19 AM
Hi Irish,

I'm so sorry that you're sick again, I sure hope that the Cipro knocks the Klebisella on it's little ol' butt! ;)  Girl, you sure are due for a major break - whew, I don't think I could go through what you have and still be so cheerful as you are (I'd be drooling and biting the closest doctor to be sure! ;)).

What is up with this doctor?  Maybe being around sick people has finally fried his brains!  Dang.  Can your Immunologist recommend a new PCP?  You're right, this one sure sounds like a dud!

Company for 5 weeks?  Wow, and you survived without killing someone too! :D  You're good!

I sure hope that the doctors can help your hubby so he also starts to feel better soon.

Please take care, hang in there and keep us updated.

Title: Re: Another infection!!!
Post by: pudmott on October 08, 2008, 04:35:23 AM
Hey Irish,
I'm really sorry to hear that you're feeling so low. Klebsiella is a nasty bugger. I hope the AB's knock it down. I can understand you feeling down. I was that way until this last week when i finally seem to be feeling human again for the first time since JUly.

I will keep my fingers crossed that this is last last little germy you get for a bit and the body cuts you some slack. Can you get a chair out in the sunshine and enjoy the fresh air a bit? I hope so.

I will also send out some vibes for your husband and hope the get the AF sorted. Is he on Coumadin?

Take care my friend and keep us posted. There is light at the end of the tunnel

Title: Re: Another infection!!!
Post by: JannaLee on October 08, 2008, 06:09:39 AM

First off, you are not alone in the "hinder" department.  I've got a growing one myself.  It's truly amazes me that the body can be under such debilitating assault from disease and pathogen...too weak to stand....and somehow the fanny thrives!  Why not my hair?!

If I had a magic wand, I would send it to kill the bugs living in you and to refresh your energies!

Try to look out the window at the lovely Fall colors.  If you can't go out in it, at least you can look at it.

My best to you sweet Irish.

Title: Re: Another infection!!!
Post by: Pooh on October 08, 2008, 07:30:26 AM
Hello dear friend,
I knew when I didn't hear from you for a while something was going on.  Well, same here.  I truly hope this ab does the trick and you start feeling a lot better. 

Take care Irish and I sure pray those meds kill this bug off and you have some good days ahead.

Hugs and God Bless,
Title: Re: Another infection!!!
Post by: genko_b on October 08, 2008, 08:01:27 AM
Hi Irish:

Sorry you have been hit with the bugs again. Rest is really what you need at this point.

Autumn is beautiful, isn't it? The color of the leaves, the excitement of fall crops, and the crisp, cool air. Janna is right - park yourself by a window and enjoy it.

Title: Re: Another infection!!!
Post by: irish on October 08, 2008, 08:25:27 PM
Thanks for the repllies!!! I called the immunology clinic today again as I was feeling worse than yesterday and think that the cipro is not knocking the bugger down. They changed me to Avelox. My insurance didn't pay for it but I really had no choice but to take this more expensive med. I think I have been harboring this bug for a long time and hopefully it will get knocked down.

Man, I really hate it when I just sit on my hinder. Don't care a fig if I even get up out of the chair and yet can't stand sitting. And besides that THERE IS NOTHING ON TV EXCEPT POLITICS AND WALL STREET. I think someone should ship all the politicians and financiers to a desert island and maybe life would make more sense. Irish ;D
Title: Re: Another infection!!!
Post by: lynnmarie219 on October 08, 2008, 09:09:25 PM
Awwwww Irish...I'm sorry that you keep having to deal with these darn infections. I was hoping that those days were behind you for a while! Please try to rest and I hope you feel better soon!
Title: Re: Another infection!!!
Post by: JannaLee on October 09, 2008, 12:24:04 PM
I'm with you Irish.  Either a desert island for them or me.

My husband just had back surgery 2 weeks ago and at his "1 week" check up he told the surgeon the pain meds and muscle relaxers were making him which the doctor replied "Are you watching the news all day on TV?  It's not the drugs making you anxious."

Title: Re: Another infection!!!
Post by: pudmott on October 09, 2008, 03:00:13 PM
I love that doctor!!!! Its true its all we are hearing about even all the way over here US politics and wall street. IM so glad i spend a good chunk of my hard earned pay on cable tv. At least there's entertaining mindless drivel on there as opposed to depressing mindless drivel on free tv.

Just think your hinder wont get cold this winter. I hope the new AB's knock the sucker down. It might be a good time to invest in some DVD's. Take it easy buddy. Look after yourself.

Title: Re: Another infection!!!
Post by: Dolly Dimples on October 09, 2008, 03:41:17 PM
  Carry on the good fight dear Irish, you are true grit!  Dolly
Title: Re: Another infection!!!
Post by: irish on October 09, 2008, 08:59:00 PM
Thanks again to all for the good wishes.

Janna, That doctor sure had his head on to come back with that remark to your hubby. Doc is right, watching the TV all day can make you anxious and depressed. However, I am one of those people who try to stay tuned for all the political "drival" so I know what is going on. It is really, really, really hard to keep up this year.Irish ;D
Title: Re: Another infection!!!
Post by: JannaLee on October 10, 2008, 06:50:42 AM
We do too for the same reasons.

Sooo much drivel and biased reporting!
Title: Re: Another infection!!!
Post by: beverley on October 10, 2008, 07:03:42 AM

You are always there for everybody else, now it's our turn.  Hope both you and your hubby start to feel better soon.  I will be thinking of you.
Title: Re: Another infection!!!
Post by: irish on October 10, 2008, 10:00:56 PM
Thanks again for all the nice replys. You gals sure can make my day.

I had talked to immunologist office and told them I was having yeast again. I think I am wearing them out. I know that they are busy and overwhelmed because of moving into a new office building. The office and infusion center are 1 floor apart and I bet they are having a heck of a time adjusting. Anyway, I did not hear from them by 1PM so I just called and made an appointment with the new doctor I plan to start with.

I saw him a couple of hours later and I am so happy I will be changing. He is my hubbies doc and he is one of the kindest, caring doctors that I have ever had. He is very low key and doesn't get upset very easily. I don't think he realized I had so many problems but he didn't leave the room so I guess it is still a "go". 8)

Anyway, he put me on Diflucan, 2 tabs today and then 1 a day for 14 days. I am sure glad I went because by this evening I was feeling even worse. I even had a 99.6 fever at the office. So now I will just keep resting until I start to feel better. Hubby is out plowing for the neighbor so I don't even had to cook lunch these days.

My girl friend with sjogrens was in the hospital and had my doc and he told her that he prays for all his patients. That really sounds good to me as I can use all the prayers offered up. Oh, and by the way, little "poor" me(as in not much money) sits and watches TV as the politicians and wall street people are wringing their hands over the stock market. I just can't come to grips with that as I don't have enough money to even worry about. I figure it everything all goes "south" we will all be in the same boat and we poor ones will be pretty well off. We don't have to adjust to living on a tight budget----we do it everyday of our lives. Pity the rich buggers!!!!! :oIrish ;D
Title: Re: Another infection!!!
Post by: pudmott on October 10, 2008, 10:21:36 PM
Hey Irish,

Im glad you got a nice doc. He sounds like a keep. Especially as he didnt run out of the room. Don't you love the yeast? Its such a nice friend. These bugs are really getting hold of you hey. You must be such a nice person they keep coming to stay with you. You gotta stop being so nice girlfriend.

As for the financials. heck yeah us poor ones are lucky we wont have to adjust we are already there. I'd rather be poor and happy.

You take care mate and look after yourself. I'll be thnkin of you

Title: Re: Another infection!!!
Post by: kimbo on October 11, 2008, 06:25:03 PM

I've been out a few days. I hate to hear your still battleling alien bugs.   I pray for those AB to pulverize and clean them out.

I love what Dolly said  :)  You are our TRUE GRITT!  ;D

I have a hammock on my front deck. If you were at my house, I would make you lay down on my hammock and watch the leaves blow as the gentle breeze flows and the clouds roll by. A good book and 3 pages into it , you would fall asleep with a big smile. 

I am so praying you feel better.  You mean so much to all of us.

 Luv kimbo
Title: Re: Another infection!!!
Post by: pudmott on October 12, 2008, 12:34:55 AM
Kimbo can i come and play in your hammock too?

It sounds divine

Title: Re: Another infection!!!
Post by: irish on October 12, 2008, 11:48:41 AM
Just an update on my current infections. These 2 or however many they are, are really tough buggers. I have been on Diflucan since Friday and took 2 tabs that day and now on the one day. Have been on cipro for 5 days and now on Avelox for 6 days and I have not reached the point where one knows that things are on the up and up.

I am a lot better as far as the mucus, cough and all the other things are but still feel quite ill and weak. Of course, my Myasthenia has kicked in because of the stress. Today I am starting to really sweat so that may mean I am turning the corner. If I don't show more improvement in the next few days it will mean back to the doc.

It is very interesting that over the years prior to going to the doctor with an infection that turns out to be a tough one, I will start to remove myself from the world as I feel that I am dying. I think, that in fact, I am because if it were not for the antibiotics I would be dead from infections that would not affect others nearly as much. I thank God for those few T-cells I have that are working so hard to keep me going. Have a good day folks. Irish  ;D
Title: Re: Another infection!!!
Post by: JannaLee on October 12, 2008, 04:04:27 PM
Irish my love,

I can tell you are feeling pretty darn low when you start talking about leaving us.  I love you dearly and wish I could give you a real hug and snuggle you down for a healing rest and carry the worry and pain for a while.

I'm praying with everything I've got for your comfort and healing.

Title: Re: Another infection!!!
Post by: pudmott on October 12, 2008, 04:58:35 PM
hey irish,

Look after those t-cells honey. we like having you round. I hope the sweats mean you are turning the corner and will finsih strong down the home straight.

I will send you some chicken e-soup to help you get better. Lots of hugs, some positive vibes. And a book of sick pud humour.

You take care honey and get your gorgeous self better

Title: Re: Another infection!!!
Post by: irish on October 12, 2008, 09:13:10 PM
Janna, I guess I didn't say that right about feeling like I was dying. I am not saying that I am feeling suicidal, When people are dying (as noticed while nursing for many years) it is really common to see them slowly remove themselves from the world or their normal activities and socialization of daily living. It is really a phenomenon that is easy to assess when you work with patients day after day and year after year as I did.

Back in 1999 at Christmas time after a major surgery in April of that year I was walking down the hall at home and I stopped dead in my tracks and the feeling swept over me that there was something really wrong with me. I had been doctoring for years but had never felt this before. I just stood there and thought about it and came to the conclusion that "oh, this is just my anesthesia from the surgery still messing with my mind. I have always had increase of strange symptoms after anesthesia. Guess I should have listened to that feeling.

One other time I was so weak and ill and still working. Could hardly sit up while driving the car home from work, but iin spite of that had stopped and gotten groceries right after work. When I got home I staggered back and forth from the garage with brief case, purse, groceries, etc and when I got in the house the feeling hit me that I was dying. It was not that I was worrying about it or obscessing about it. It just came and left just as fast. I got into the doctor the next day and was put on antibiotics and got to feeling better.

What I am saying is that apparantly when a thought comes to me out of the blue I had better get my hinder to the doc cause there is something going on. Our bodies sure have strange ways of telling us things. I really feel pretty crappy and am not thrilled about how slow I am responding to the medication this time. However, besides being sick of being sick, I am sick of not being able to get my housework done. Since I have been ill I have had the messiest house and it embarrasses me cause I AM THE  ONE who makes the mess!!!!!Take care all Irish ;D
Title: Re: Another infection!!!
Post by: pudmott on October 12, 2008, 09:18:07 PM
you need a direct line between that brain and your hinder so that they can work in unison to get you to the doc.

As for the mess.....AAhhh dont worry. gives the place atmosphere

Title: Re: Another infection!!!
Post by: JannaLee on October 13, 2008, 05:59:24 AM
Oh Irish honey, your explanation is what I thought you meant in the first place, then I thought I was wrong.

I never thought you were suicidal, just real down about not being able to kick this latest infection.

I sure hope I didn't hurt your feelings or embarrass you.  You were my very first friend here and hold a special place in my heart.

Contritely yours,
Title: Re: Another infection!!!
Post by: irish on October 13, 2008, 09:06:33 PM
Janna, My friend to the North, no, I am not at all put out with you. I just figured that I didn't do very well at saying what I wanted to. You know how the old sjoggie brain works.

The one bad thing about being down and not able to be active is all my ice cream is settling south and also in my 3 bellies. I hate getting fat. I have always been a "healthy" looking girl weight wise (wore size 2 when I was a toddler) and I eat the craziest stuff because of my appetite being all goofed up. Of course add in the Prednisone and here comes the cellulite.Take care girl. I think you may get frost tonight. The temp dropped down here about 20 degrees later afternoon and it cleared up with a full moon. Better cover any flowers you want to save for awhile. Irish ;D
Title: Re: Another infection!!!
Post by: irish on October 15, 2008, 09:39:07 PM
Just another update. I went to my psych for my med check and had to have a mini mental status test done because I am over 60. I PASSED and was I ever relieved. I missed remembering 2 of the 5 words they give you and one other little thing but I guess my mind is still with me----most of the time.

As far as infection goes---this is really strange. Still not feeling very well and am weak and sweat and have a lot of mucus. I was up much of the night last night coughing and hacking. I am very suspicious of the mycobacterium infection being back. I have a culture growing that should be ready to read about now so hopefully I will find out when I see the doc. Otherwise I really can give him a good sputum culture now.

My insurance is going to have a fit as I have had 3 sputum cultures in three months. The acid fast sputum for the mycobacterium is sent to the National Institute for Health and I will have to look but I bet that cost plenty. It takes about 2 months for it to grow and be identified. Never a dull moment. But at least I still have some of my mind. :D  Irish ;D
Title: Re: Another infection!!!
Post by: on October 16, 2008, 08:54:27 AM
Oh Irish sounds like you're having a hellish time of it at the mo, I just wish I could make the abs work a bit quicker for you and get you back on your feet.  In the meantime I'm wishing a duvet, hot chocolate, massage by a hunky adonis all to come your way.  Take care hun

Wen x x
Title: Re: Another infection!!!
Post by: Tinker on October 16, 2008, 05:03:51 PM
Irish, I am sooo sorry you are feeling so poorly.  It's amazing to me that you have had "ESP" about dying and having it come out of the blue. 

I, too, have felt that way.  I knew in my '30's when I was still heathy and strong that I wouldn't live long.  I told my Mom that and she asked why.  It's just a feeling...just a feeling. 

And lo and behold, I've escaped death several times.  With the breast cancer, after the 4th chemo, I remember thinking....."this is what dying feels like."  I told my husband and we dashed off to the ER. I was hospitalized for 3 days and put on steroids.  I felt a lot better until they stopped sthe steroi and I experienced the "steroid crash."  Oh, my.  Another close call was when I had a reaction to IV phenergan.  My husband saved my life as I was unconscious and not breathing well with a pulse oximeter of 56.  They revived me, thank goodness.

And now I am battling these illnesses.  But I KNOW about your feeling.  I just know I'm not going to be here for much longer.

It's clearly just a feeling....  Sending you best wishes, e-chicken soup (I stole that from someone here), and good health asap!

Title: Re: Another infection!!!
Post by: irish on October 16, 2008, 10:24:44 PM
tinker, You have had some interesting experiences. I have not had any that were close to being dangerous but I think that our body does give us vibes when there is something wrong.

My MIL had an episode when she was in her 40's where she was putting the meal on the table. They had company and she remembers having just the worst pain in her chest and the next thing she knows she wakes up and is lying on the floor. The interesting thing is that while she was unconscious she said she heard the most gorgeous choirs singing church music. I thought it was interesting and my theory has always been that she passed a clot through her heart. Just a theory mind you.

One time following surgery she was given an overdose of morphine after surgery and the nurse came in the room in time to save her life. That time she said she was heading toward the most beautiful light but a man kept telling her that she had to go back as she had to raise her children. She could remember not wanting to come back. Interesting stuff!! She lived to be 81 years old.IRish ;D
Title: Re: Another infection!!!
Post by: Tinker on October 17, 2008, 11:35:17 AM
Wow, Irish, I totally believe in the death experiences, the light, etc.   I wish I had had an experience like that as it would have made me more relaxed and not so afraid of meds.

I didn't mention this , but last wk when I had the surgery, one of the nurse anesthetists gave me the wrong medication. I cannot take makes me anxious and jittery.  The anesth. gave me an injection to calm me (Versed) and I was so uncomfortable that I sat straight up in bed.  He asked me how was I feeling.  I responded by saying that I felt worse!

He came back with a shot of Versed and I was very relaxed at that point.  BUT I KNOW HE GOOFED!  I know that feeling of compazine and that is exactly what he gave me the first time.

It was on my red bracelet as an allery med.  Doesn't give me much comfort to know that these kinds of mistakes are made.
Title: Re: Another infection!!!
Post by: irish on October 17, 2008, 10:40:17 PM
tinker, It is possible that he gave you a med that was similar in chemical structure as the compazine. Compazine is used for nausea and it is very possible that he gave you one of those other meds instead of the compazine. Of course,if you were nauseated and vomiting the compazine could have been given.

Also, versed is sort of like a very high tech valium and causes sedation and AMNESIA!!!! You can have the procedure with versed and a pain med and you forget much of the ordeal. When our son had his knee surgery we took him home(he was 24 years) to his place and he asked over and over how the surgery went. He was sort of funny sitting in the backseat with his cap on backwards and stoned out of his gourd.

Anyway, I havae gotten so I ask the nurse what she is giving me or what she is doing. I have gotten pretty paranoid about things in my old age. Irish ;D
Title: Re: Another infection!!!
Post by: Tinker on October 18, 2008, 03:38:55 PM
Hi Irish,
About the Compazine......Reglan is it's cousin and I had it listed on my bracelet as a known allergy, so it could have been one of those two.  I vividlly remember getting compazine IV while on chemo and I'm telling ya it was sooooo uncomfortable to be that jittery.

That's how I felt on this definately was not Versed.  I LOVE VERSED!  lol   Anyway, the fact that I immediately felt so much better was a tip off , too.

I had already been given the nausea med, Zofran, so I didn't need compazine. ???  I know he goofed.

Since I take Ativan, or benzodiazepine, it takes a lot of Versed for me to feel it.  So, I was awake and alert and talking to the staff in the OR until he injected the anesthetic.  This is a surgery that I remember everything about.

Once I had a bladder dilation and couldn't remember anything but my nurse.  LOL!

Title: Re: Another infection!!!
Post by: Sandra on October 18, 2008, 08:37:45 PM
Hi Irish, you sure are a fighter. I am the same with all these infections. This past year i was on one or another every 2 months. Nobody has bothered to ask what is wrong til recently. I also get the thick chokey mucus thing and eventually the pain, nausea, fatigue, sweats make me think about asking Scottie to beam me up too (star trek) I have actually made piece with my maker if he decided tonight was to be the night. That sure doesn't mean i want to go though.
So what's happened lately after evry scope humanly imaginable has happened sometimes twice, the big heads have decided a low dose antibiotic for 3 months would be the next line of defence. i have such trouble with full dose antibiotics. I think i still have trouble with yeast though. Keep eating my yogart. Has a stomach scope yesterday and the dr feels that there is nothing wrong with my stomach, that it gets inflamed because of a problem down stream. I have problems with my bowel and bladder just going on hiatus, ileas is what they call it I think. So then the toxins build up, it inflames my liver and the Cirrhosis, and talk about brain fog  :o, it's caused from the toxin build up too. Try as i might no matter what food, or no food or fiber food or clear liquids whan this ileas thing happens that's it. i drink gallons of water and try exercise but it's hard because I feel like a balloon and sick. If it gets real bad there's vommiting too. Just a real fun guy to have around. But I think I have help, yep the calvary is coming as the urologist has actually asked me back for a follow up. He seen nothing in my bladder to warrant the infections and is concerned about the sharp full pain in my lower left abdomin. He even said is it your ovary? Gees i don't know but I'll talk to anybody about what it is s i am darn sure what ever it is is causing somekind of blockage at times. I am ready to do some exploritory surgery on myself!
Do you have any bowel trouble? I trully think that all the toxins that build up account for the infections, how could I not end up with one?  Sure hope things settle down allot for you and you are feeling better very soon. How is your liver function? Sandra
Title: Re: Another infection!!!
Post by: Tinker on October 18, 2008, 09:39:57 PM
Just another update. I went to my psych for my med check and had to have a mini mental status test done because I am over 60. I PASSED and was I ever relieved. I missed remembering 2 of the 5 words they give you and one other little thing but I guess my mind is still with me----most of the time.

As far as infection goes---this is really strange. Still not feeling very well and am weak and sweat and have a lot of mucus. I was up much of the night last night coughing and hacking. I am very suspicious of the mycobacterium infection being back. I have a culture growing that should be ready to read about now so hopefully I will find out when I see the doc. Otherwise I really can give him a good sputum culture now.

My insurance is going to have a fit as I have had 3 sputum cultures in three months. The acid fast sputum for the mycobacterium is sent to the National Institute for Health and I will have to look but I bet that cost plenty. It takes about 2 months for it to grow and be identified. Never a dull moment. But at least I still have some of my mind. :D  Irish ;D

Irish, how are you feeling?  Please give us an update on your health.  Sending you healing vibes and prayers to uplift you and give you strength and comfort.  ♥♥♥ Tinker
Title: Re: Another infection!!!
Post by: irish on October 18, 2008, 11:09:11 PM
tinker and sandra, I had a better day today and even scrubbed floor with a mop and shok rugs plus other stuff. EVery time I get up to do anything the sweats start full bore and I am like a wet stinky dishrag--well almost. :)

I took my last avelox today and am still on the Diflucan for another week. Haven't heard on the other sputum culture yet. I still have suspicions that I have an area in my throat that has been chronically infected for about 8 years. It makes a lump in my throat at time and after drinking lots of fluids and coughing hard al day I seem to bring up something that is reminiscent of what I considered to be  boil many years ago. The colored infection is much better but I still think it is just lying there and comes to haunt me.

I have been scoped, cat scanned, and had exploratory of nasal pharynx under anesthesia that lasted 2 hours. I have seen more ENTS and other docs than I can shake a stick at and I still swear that spot is there as it gets sore. Possibly a chronic subtle infection of a salivary gland or tissue in that area. I had such bad teeth and had so much infection and this has to be from that. Oh, I have also wondered about having a latent infection from being intubated during one of my sugeries.

It is something that really wears me out and keeps me down too much. I, too, have made peace with my maker and ready to go, but as I told my doc, I still have a will to live and some fight in me and need to be around for my grandkids. If my CD4 cells would ever get up to even 300 I think I would do better. Doc thinks it is hereditary immune deficiency and that is what throws my system off and has caused me to have all these autoimmune disease.

Can any of us help it that we were just born lucky. :P Oh, well, we just keep plugging along. Oh, the docs aren't bery keen on putting me on really long term antibiotics as with the t-cell issues when the antibiotic is done I will still get infections. Also, they have talked 6 weeks of IV antibiotic but I am allergic to so many of them that they are just coasting to see how I get along. Doc is afraid I could really have bad allergic reaction. Take care all. Irish ;D
Title: Re: Another infection!!!
Post by: pudmott on October 19, 2008, 12:58:56 AM
Irish and Sandra,

Hang in there guys. I sent an expressed email to the maker to say im holding you both for ransom. He/she cant have you yet im not ready to let you go.

Title: Re: Another infection!!!
Post by: Tinker on October 19, 2008, 12:23:59 PM
Irish, I'm so glad you had a better day. 

Just a note:  if you every get anesthetized again, ask for a LMA (laryngeal mask anesthesia)  instead of the intubation.  After you get the anesthetic, the anesthesiologist inserts a device in your palate to hold your tongue out of the way. 

When I have been anestheitized and intubated before, I have spasms in my throat when the tube is pulled.  It's rough on the throat and for me, it causes big problems.  Not to mention scary cause I can't breathe.

The only side effect of the LMA is that if the guy doesn't know what he's doing he can scratch your palate a bit.  Last week everything went well and I only had a slight scratch.
Title: Re: Another infection!!!
Post by: Katybarstool on October 19, 2008, 12:51:57 PM
Hi Irish

Sending you wonderful healing vibes.  The maker needs to know he can't have you yet - we need you too  much for that.

Title: Re: Another infection!!!
Post by: Tinker on October 19, 2008, 05:09:36 PM

I'm so sorry you are feeling so poorly.  I know about ileus!!!!!!!!!!  I got it after having a colonoscopy in April.  OMG, it was just awful.  I bloated up, could not eat anything.   DH bought Ensure and I drank that for a week. Finally saw the gastroenterologist who performed the colonoscopy and he said he thought I had IBS.  That was news to me and I'm NEVER having another colonoscopy unless I'm bleeding or have symptoms of colon cancer.

It took more than a week to fully pass.  What I had is NOTHING compared to what you are going through.  I certainly hope your urologist will find out what's wrong. 

Keeping you in my thoughts and prayers.  ♥♥♥ Tinker
Title: Re: Another infection!!!
Post by: Collie on October 19, 2008, 06:14:38 PM

I am sorry to hear you are sick with another infection, being sick in a pain in the rear, literally; my butt gets mighty sore sitting on it all day doing nothing. I was also thinking one of the reasons you might not feel well is because antibiotics can cause systemic yeast infections; have you ask you doc for med to treat yeast or have you been on a no yeast diet? There is an excellent book by Dr. Crook called the Yeast Connection, he also has a cookbook with the same name. I followed the recommendations in the book when I first got sick and it made a huge difference.

Hope you feel better soon

Title: Re: Another infection!!!
Post by: irish on October 19, 2008, 10:03:52 PM
Thanks again for all the kind thoughts. I paid for working too much yesterday and was down all day in my recliner except when I went to the bathroom or got up to find food. I am gaining weight cause I am eating too much because I am stressed out from sitting around.

Also, I am on diflucan now and never really get totally rid of yeast in my mouth because of my severely low t-cells. THe yeast does get kicked up when I am on antibiotics. I am on 2 weeks worth this time and that usually does the trick. I don't get it as bad as some people do but it is enough to bug me and make me feel a little yukky.

Tomorrow will be another day and will be better cause I deem it so!!!! ;) Take care all. Love the fall weather! Irish ;D
Title: Re: Another infection!!!
Post by: kimbo on October 20, 2008, 08:24:56 PM

I feel silly to give any advice to you because you are our GURU.

But is there acidophylis pills or supplements you could take to help you?

I am so enjoying this fall weather.  We moved my daughter and husband into their first home this past week end, the weather was perfect for it.

When they set up their trampoline , I climbed up on it with Elroy, my pup and took a nap under a cloudless blue sky.

Sunshine on you Irish  :),
Title: Re: Another infection!!!
Post by: irish on October 24, 2008, 10:06:27 PM
Just another update. I had another sputum culture done while I was on antibiotics and they are in the process of getting the final report. I asked the doc today while at clinic with hubby and he copies the preliminary reports for me.

I have a gram negative bacteria that is growing for culture and sensitivity and I just finished Avelox which didn't cover it. Plus, I have one more pill of Diflucan left in my 2 week series and I am growing more yeast than when I was put on it.

This is getting to be the pits. I know that this started in July or got worse in July and has just been picking at me all this time. I feel like a truck ran over me plus the mucus issues and sort trachea and throat from hacking. Woe is me!!! Oh well, I see pulmonary on Tuesday and also have infusion on Tuesday.

I have yogurt everyday and do the pills on occasion. The problem with me is that with my immune system I can make myself worse with the pills. Get too much and have an overgrowth of the good bacteria.!!!!Irish ;D
Title: Re: Another infection!!!
Post by: Katybarstool on October 25, 2008, 10:32:29 AM

Sounds as if your damned if you do and damned if you dont.

I hope you feel better on Tuesday after the infusion.

God bless.
Title: Re: Another infection!!!
Post by: irish on November 03, 2008, 08:05:26 PM
Hi folks, Just another update on my blessed infections. I had my infusion last Tuesday and saw the pulmonary doc the same day. She is in the same building so just took my IV pole and hubby and walked down to that office.

I will have my CPAP pressure increased plus she put me on Cipro for 14 days. My culture came back with Klebisella again and even though the Avelox was sensitive it didn't seem to do the trick. Meanwhile, I had another episode of hacking out a green plug of mucus and more drainage. I felt very ill and went back to my primary who did a Cat scan with IV contrast the following day. I think this was the 5th one of these I have had.

I feel like my epiglottis has something wrong or that there is an infection in my throat in that area. It hurts when I swallow pills and seems to come and go. Really a miserable thing and causes me to hack mucus all the time. The doc is trying to get me in to my good ENT in the cities. I have seen the ENT so many times and he has tried so hard to find what is bothering. This is just the pits.

I still maintain that a lot of this infection is related to my teeth that had so many abscesses years ago. I think I have a simmering infection someplace down in that area. Also will have times that my jaw bone hurts and feel like lymph node hurts deep in my neck. I have had a Three phase MRI with contrast to check me for osteomyelitis in the bones of my face. My ENT did that a couple of years ago. I have practically run him dry.

He specializes in neck and throat surgery and diseases so I am hopeful that he has learned more over the years. I have gone to him for 10 years and he is an extremely nice man and an awesome surgeon. At least that is what the operating room nurses told me and when a nurse uses the word "awesome" you know they are good.

Anyway, the saga continues. I get episodes of stridor which is a rattling in the throat area as the air passes over swollen tissue or tissue that has some unusual situations. I have had something rupture many times over the years and once I felt like it was going to totally obstruct me. Went to ER and nothing was done. Came home and 1 1/2 hours later it ruptured and I coughed up all that drainage. I can't believe I'm not dead!!!!! Meanwhile my primary is running another culture for the mycobacterium infection. This will be the third one this year!!!

Interesting month in October. Between hubby and I we were to the doctor or ER 17 times. My house is a mess and I am on automatic pilot. I have to get my rear in gear cause the holidays are coming. Take care all. Irish ;D
Title: Re: Another infection!!!
Post by: Katybarstool on November 04, 2008, 12:10:22 AM
Oh Irish!

I'm so sorry that you are having all these problems. I hope the cipro works.  I think you will just have to ignore the fluff bunnies for now and rest and repair.

God bless.

Title: Re: Another infection!!!
Post by: pudmott on November 04, 2008, 03:46:54 AM
maybe you can tell the fluff bunnies its easter and let santa have a rest.

Sorry to hear the mucous is hanging around. you must be too nice t it. lets hope the cipro can get it moving. just rest uo ok. take in those lovely autumn colours and visualise each falling leaf as one less infection.

i'll keep everything crossed that it all clears up soon

Title: Re: Another infection!!!
Post by: JannaLee on November 04, 2008, 05:31:47 AM
Irish honey,

I am praying for you to get better.  It is more than a little worrisome that you cannot resolve this infection.

Title: Re: Another infection!!!
Post by: LenV on November 04, 2008, 01:45:26 PM
You and Lucy just can't stay out of trouble when I'm gone.  What oh what will I do with you??!!

Seriously, I sure hope they can pin this one down and find where it is coming from.  Is there any kind of scope they can pass into this area and see maybe where it is happening?

I wish I had some suggestions for you.  All I can do is send hugs and a smilie. :)  It's not much help I know.

Title: Re: Another infection!!!
Post by: Collie on November 04, 2008, 02:27:50 PM
I am sorry you are so ill.

When i was about 10, i had a severe throat infection, My epiglottis was black and blue it was so swollen; and my family was dirt poor, so my dad gave my a shot full of brandy and said, this will burn like heck but you will be better by morning. I woke up the next morning and the throat felt 100% better. the alcohol in the brandy burned out the infection.

Title: Re: Another infection!!!
Post by: pudmott on November 05, 2008, 05:56:10 AM
Or if the brandy doesnt kill it you will be so sozzled you wont feel a thing.

either way its a win win situation

Title: Re: Another infection!!!
Post by: pudmott on November 05, 2008, 05:26:37 PM
Hey Irish,

have you been sending your germs down under??? I woke up this morning with sore throat and thick run off down from my nose. I told you that you were too nice to the germs and needed to get rid of them but not to my place.

I got a full house already

Title: Re: Another infection!!!
Post by: irish on November 05, 2008, 09:38:34 PM
Hi Foks, Just to let you know I will be seeing my ENT tomorrow. We have to leave at 6 AM because of the traffic and neither hubby nor I feel good.

I just finished researching my infections etc. I had to make up all kinds of lists etc for my disability and happened to think of them today. I found that between 2000 and 2003 I had been to the doc 65 times and to the dentist 34 times. This does not include my psychiatrist for med checks or any tests etc. I documented all the infections I have had since 2005 and will show them to the doc tomorrow. This is not getting better, if anything it is getting worse.

I swear they had better find out something. I know that all this infection is from my teeth. You should have seen all the abscesses that I had documented and teeth with a post in them that had been low grade infected for several years and no one would listen to me and pull them. I know that all my soft tissue in my throat must be just full of chronic infection.

I would guess that the only thing they can do is IV antibiotics and if that doesn't work I am just going to have to live with infection until it kills me. With these low t-cells my goose is pretty well cooked. These infections make me feel sick to the depth of my soul as I told my new GP.

I still think that it is amazing how much we can get done(even though it isn't much) when we are sick. The human spirit is so tough. I swear I will get my house cleaned up. I will have my kitchen cabinet doors painted by the end of the year. To think I started them 2 years ago. Hugs to all. Irish ;D
Title: Re: Another infection!!!
Post by: genko_b on November 05, 2008, 10:14:18 PM
Irish Please, please rest when you can. I wish I could come help you with the cabinets. We are really worried about you and hope you get some answers soon.

Title: Re: Another infection!!!
Post by: pudmott on November 05, 2008, 10:23:48 PM
Wow Irish you are a trooper. I am soi inspired by your spirit.

Goodluck with the doc. i hope they listen to you. and get this thing fixed. Go on the IV antibiotics if you have to. there has to be a way to get rid of all this. .

I will keep you i my thoughts and prayers my friend

Title: Re: Another infection!!!
Post by: Tinker on November 06, 2008, 01:49:40 PM
Irish, hope that you find out something today and start feeling better.  enough is enough!!  I know I've been to the doctor so many times that I couldn't begin to count.  But, I'll bet I've been at least twice a month for something!

My grandson got a pic line for IV antibiotics after he got cellulitis and possible osteomyelitis (it was MRSA) playing football with a kid had also had MRSSA.  He isn't done yet, but maybe you could get this, too, if indicated. 

Sending healing vibes to you, Irish.       :-* :-*  Tinker
Title: Re: Another infection!!!
Post by: irish on November 07, 2008, 10:15:34 PM
Well, I was too pooped to check my computer last nite. Was to the ENT. He was just walking from his car to the office when we drove in the lot and he looked so hard at us. He hadn't seen us for a while. When we got in to the front desk they knew who I was as doc had asked them for my chart. I have seen him so many times that he almost feels like family. He is a kidder and is so easy to get along with. He is by far one of the nicest docs I have met with this ordeal. We have bucked heads a few times, but he is the one who seems to send me to the specialists at the right time. He knows all the really good docs in the cities.

Anyway, the thickening at the base of my tongue that showed up on the catscan was visible when he scoped. It wasn't very big, but doc had my hubby look at it also. He put the gloves on and checked my mouth and could find no lumps in the area. He says he will biopsy down the road if necessary. Also, it is on the side of my tongue that doesn't seem to hurt much. It is really hard to tell. I have pain on the right side of my tongue and under my tongue and on the floor of my mouth. I still maintain that there is something there, but I guess it will be a waiting game. Doc isn't gun no on takiing a knife to me because of my low T-cells, so I will just wait a few months.

The reason I will be patient and wait is cause hubby has his bladder stone surgery on Tues next week. Also, my ENT gave me the recipe for another solution to use when irrigating. He said that the academy of ENT docs has been looking for another product to use for irrigations in place of Gentamycin and some of the other antibiotic nasal irrigations. These antibiotics have the potential for causing hearing loss and because I am deaf in one ear he didn't want to chance it.

Take 1/4 tsp of soda, 1/4 tsp of salt(not iodized) and 1 cup of warm water. Can use tap water that has been boiled or plain distilled water. Mix this up and add 1/2 tsp or 2 1/2 cc's of Johnsons Baby Shampoo, No Tears. Yes, that is right----baby shampoo. I have tried it 3 times now and I feel like I am foaming at the mouth and blowing bubbles. It does taste strong, but I will hang in there. He said that they are having good luck with this but it takes 6 weeks or more to show improvement.

The baby shampoo has an antibacterial or antiseptic affect plus it loosens and thins the mucus secretions. Also, the smell in your head for an hour or so is baby shampoo. Maybe some of you can try it and help. I am going to give this a chance and see if it makes a difference in my issues. If it does it is safer than IV antibiotics. Take care everyone. Irish ;D
Title: Re: Another infection!!!
Post by: Scottietottie on November 08, 2008, 07:07:32 AM
Hi Irish  :)

that sounds like an interesting solution. I thought baby shampoo for the eyes was quite odd but I can't imagine it up the nose. I'm getting such a bad taste at the back of my throat now that I just may have tio try it!

I wish your hubby luck with his surgery. It's a lot to cope with for both of you when you've been having such health issues yourself.

Take care - Scottie  :)
Title: Re: Another infection!!!
Post by: beverley on November 10, 2008, 12:46:10 PM
Irish I am so sorry that you and your husband are both so unwell.  It is really difficult when you are both poorly because you need someone strong around when you feel down - on the other hand I guess you give each other moral support.  I hope you get some positive solutions soon.  This seems to have been going on for a long time now, I should think you are exhausted.
Thinking of you.

Title: Re: Another infection!!!
Post by: irish on November 13, 2008, 12:14:54 AM
Just a note to all of you to let you know that if I don't show up around here much it is because I don't feel well and have things to get done with the holidays coming. Plus, my infection seems to have reared its head again. I have b3en in contact with several doctors the past few weeks and today I felt so lousy that I was in bed or on the couch all day. Tonight my swollen throat or tonsillar area had another "rupture" as I call it. I let my immunologist know about it per phone and have collected another sputum sample.

I also did some googling and I think I have diagnosed myself. I think that I have what is called Actinomyctes infection. This can happen with extensive dental work with infections. The whole shooting match sounds like what I have gone through these past years. I know that the infection has invaded more of my facial and throat tissues and I don't know if I would be able to have any of the bad tissue removed surgically. Years ago I asked several docs if this could be what I have and of course because I mentioned the issues the doctors would pooh-pooh the idea(sorry pooh 8)

I wish they had listened to me!!! I could be wrong but I doubt it as I have been tested and scanned and poked for all these years with no results. Both my hubby and I are older and more tired and sick of all the driving and running here and there and this could mean more intense doctoring--again. By the way, my hubbey's surgery yesterday went well and they blasted his bladder stone, and did a cysto under anesthesia and did several bladder biopsies because the inside of the ballder was so inflammed. Doc though it was because of the stone pounding on the wall of his bladder for who knows how long. He gets his catheter out tomorrow. Please keep me in your prayers if you think of it. I have to pull myself together to get through this ordeal. Hugs to all. Irish ;D ;D
Title: Re: Another infection!!!
Post by: Katybarstool on November 13, 2008, 12:23:58 AM
Hi Irish

I hope you are right with your diagnosis, so that you can finally get treated. Well done for having the tenacity to wade through all the research.

My thoughts and prayers are with you and your husband.

God bless.
Title: Re: Another infection!!!
Post by: Chana M on November 13, 2008, 02:09:16 AM
Oh Irish

My heart goes out to you.  You say that you have to 'pull yourself together to get through this ordeal'.  It sounds to me as though you're pulling yourself together brilliantly; I just wish it wasn't such an ordeal and you didn't have to go through it.

You're in my thoughts and prayers, and I'm sure those of many others.

Chana x
Title: Re: Another infection!!!
Post by: pudmott on November 13, 2008, 03:45:37 AM
Irish honey,

I don't have to think about it. you are already on the top of my list of prayers right now. I have been thinking of you all week wondering how you're going. I only have a tiny infection compared to you and its driving me nuts, soi can't even imagine what you are going through right  now. I'm glad you listened to your body and rested today and that your hubby's operation went well.

Take care of yourself honey and just get here when you can to keep us posted.


Title: Re: Another infection!!!
Post by: JannaLee on November 13, 2008, 07:21:57 AM
Dear darling sweetie Irish,

I am praying also! 

I am certain you are right about where your infection now the challenge will be stroking "professional ego's" to get treatment.

Wishing you both wellness,
Title: Re: Another infection!!!
Post by: Scottietottie on November 13, 2008, 08:49:06 AM
Hi Irish

You must be exhausted. Everyone will understand if you are not around but do please pop in now and again and give us a quick update - or we'd worry!

I'm truly sorry you're feeling so rotten and constantly going for appointments is no help - I know.

I'm glad yuour hubby's surgery is over and done with and hope his recovery goes smoothly. Both of you being ill at the same time must be so hard.

thoughts with you both.

Take care - Scottie  :)
Title: Re: Another infection!!!
Post by: irish on November 13, 2008, 10:33:42 PM
Well, here I am again. Still exhausted and still with draining areas in throat and base of tongue. My immunologist's nurse called back and they have put me on biaxin for 14 days and flagy for 14 days and if not better I am to see ENT again. I also called and gave a message to my ENT's nurse about the draining tissues in my throat.

I am also sure that I over reacted about the actinomycetes infection although it sure has the sound of what I am going through only not as acute. There are other infections in that family that are not as severe and are anerobic or bacteria that grow with out the presence of air. Quite usual in infections from dental work and other infections in the deep tissues in throat etc.

I guess it will be the wait game again. Hope that my ENT doc calls tomorrow cause I still think I will need to have incision and drainage of this junk. Hubby and I are about stressed out from all the medical issues that seem to follow us. None have been severe enough to kill us but sure cramp our style. Now, what was our style again. Fun comes few and far between with the chronically ill.

I am not coping as well as I should as everything seems to just have piled up on me. However, I did get to the basement tonight and mopped up and straightened up in my wash room and washed a few loads of clothes. Have plans for tomorrow also and it darn well better be a half way good day. ( Now I have getting feisty, you can tell I have about had it) TAke care all. Hugs and thanks to all of you for your support. At my house I am occasionally referred to as "pus bucket"!!! :o Irish ;D
Title: Re: Another infection!!!
Post by: pudmott on November 14, 2008, 02:41:03 AM
Hey Pus bucket,

You know its ok to fall in heap every now and then. You don't have to be a martyr. Its only when you stay in the heap that it becomes a problem. Allow yourself to rest and let your body get better. Allow yourself to be ok with being sick for five minutes.

Take Care Honey

Title: Re: Another infection!!!
Post by: irish on November 14, 2008, 09:50:16 PM
Hi Pud, I know you are right about the resting. I am not able to sleep during the day much. I can be just exhausted and want to sleep but it doesn't happen. Today, I stayed in bed until 11 am and then was going to do a few things while still in my nightie. I had to sit down and rest and I fell asleep and dosed much of the day. My hubby(who is still resting up from his surgery) got dinner and supper so that was really nice. Now I am awake and hope that I can sleep tonight. Take care. Irish ;D ;D
Title: Re: Another infection!!!
Post by: ktfabian on November 14, 2008, 11:31:46 PM

There's no need to rush off and do that laundry - at least not until you both run out of undies and pjs.  And then the healthier of the two can just slip down to WalMart or such and buy a few weeks more to get you through!

You're in my prayers and hope they get all this mess under control once and for all for you!
Take care, Tracy
Title: Re: Another infection!!!
Post by: kimbo on November 15, 2008, 06:32:25 AM
Hey Irish,

My prayers are on the ENT.

When you are down like this, if you can just solve one priority in your house per day. It's enough to get by with a two people  household. I prayer you have the energy to just do that.

But I also know from my own experience, the gloom that sets in when extreme fatigue and nagging health issues dominate our lives.

Get out your photo albums and feast on great memories.

Eat happy food -Blue bell home made vanilla ice cream with lots of Hershey's syrup for lunch makes great diet food when subbed for a meal. (makes any throat feel better, too)

Please don't stress the holidays, Just being with our loved ones in a simple kind of way is the main ingredient to Happy Holidays. Simple plans are the best layed plans.

I pray your ENT takes you very serious and I pray he listens to you.

We all love you so very much, you are a force to all our sjoggy bodies.  MAY THE FORCE BE WITH YOU !!!!!!!   ;D

Title: Re: Another infection!!!
Post by: Bucky on November 15, 2008, 05:21:00 PM

Sending you bushels of get well quick wishes to you and your husband.  You both have had more than your share of illness this year.  Enough already!!  I agree with other posts - let the laundry go (turn your clothes inside out if you need too . . lol).  I wished I lived nearby, I'd come over and help you.

Rest and take care of yourself.