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Sjogrens Topics => Living With Sjogren's => Topic started by: navydad on December 26, 2008, 04:29:36 PM

Title: some observatations
Post by: navydad on December 26, 2008, 04:29:36 PM
As I sit here with the antifungals dripping into my PICC line,, I gave some thought to the last year,, As most here know, I have never tested positive for SS,, not through markers, or through lip biopsy, but was DX;ed only through the dry eyes and dry mouth, now after 6 months of plaquinel, lyrica,, steroids, everything,, nothing has slowed the pain in the legs, or teh chronic sinus infections, so let me back track, when my eyes developed teh cyst type stuff on teh inner eye lids,, no one thought to sample it to see what it might be,, most just said,, dy eyes doing it, when hte first sinus infections staarted,, no one thought to culture it till the third time, thats when fungal,, pseudomas,, staph and MRSA showed up,, when the leg and muscle pain started to get really bad and continues,, no one thought that it might be a muscle infection or bone infection,, now Ilm beginning to wonder if all along one problem that never was considered was that staph infections and MRSA is causing all thee problesm,, the eys may have been staph,, the cyst are still there after a year and 3 months,, the leg pain has burrowed deep into the muscles,, now the groin and colon are are constantly hurting,, constipation is unreal,, the ENT has thrown up his hands, the ID still thinks it some allergy doing it all HUH,, my mouth is not dry all the time, even 60 mg  a day of steroids ahsent sdlowed things down,, when I was in the hospital last month,, I had dopplers on my legs done,, nothing showed,, MRI;s of the lower back,, mostly bulging disc, and a small tear,,, nothing that can account for teh pain they are in,, this summer when my hands and feet peeled,, no one thought o see what might bedoing it,, have come to find out staph can do that,, truthfully,, in my mind,, I really think my body has been battling noting but staph infections all along,,
Title: Re: some observatations
Post by: Scottietottie on December 26, 2008, 04:42:28 PM
Hi navydad  :)

What you say makes an awful lot of sense. None of the usual treatments for SjS have made any difference to you at all and people do usually feel some benefits. The steroids could have weakened your system making it harder to fight the infections. Have you run this past any of your doctors??

I do hope they get rid of the infections soon and really hope 2009 is better for you. You really deserve a break.

Take care - Scottie  :)

ps - it would be wonderful if you don't have SjS.
Title: Re: some observatations
Post by: ktfabian on December 26, 2008, 04:46:20 PM
Wow, Navydad,

You've really been through He** these past months.  I wish I knew something to tell you to help, unfortunately, I don't.  I do understand how nasty all of the infections can be.  I had MRSA last year, but didn't have any long-lasting repercussions.  My brother-in-law had rods replaced in his spine last Christmas (he's paralyzed from the waist down) and has been battling MRSA and other infections for a year.  They're finally deciding that the infections must be somewhere on the hardware that was put in.

I wish you the best and wanted to let you know that I'm listening.  Others who are off for the holidays may be able to tell you something of medical value when they return. (Scottie just posted as I was writing, and knows much more about infections than I do)

In the meantime, please know that I've added you to my Sjs prayer list and that I hope you find an answer very, very soon.
Title: Re: some observatations
Post by: lynnmarie219 on December 26, 2008, 07:06:26 PM
Hi navydad,

I agree that what you have mentioned could be the problem....the only way to know for sure is to talk to your doctors and have them test for the infections.

I sure do hope you get some answers and relief from all that you have been through.....please let us know how you are doing and I wish better health for you in 2009!
Title: Re: some observatations
Post by: Patze on December 27, 2008, 05:03:33 AM
Hi Navydad,

Boy I'm sorry that you're feeling so bad, and like the others have said, you sure been through the ringer!  Have you asked your doctors why they didn't test for the MRSA & staph infections to begin with?  If you did, what was their reasoning?

Hang in there Navydad, and please take care -

Title: Re: some observatations
Post by: Epson on December 27, 2008, 08:16:02 AM

Your dx sounds good.  Obviously your doctors have not been successful in their course of treatment, so their dx has to be questioned.
Title: Re: some observatations
Post by: irish on December 27, 2008, 10:40:38 PM
Hi navydad, I have wondered how you are doing. You have a lot of weird things going on and glad that they are now treating your infections.. I would have lots of questions about having bone infection as usually bone infections are totally unreal and can have draining fistulas and a really big problem.

I have always wondered if you were having a lot of neuropathy in your legs. Also, you have a primary immune deficiency if I remember correctly, Is that right? This is probably the reason for the infections. Anyone that has low white cells gets infections easily. Primary immune deficiency patients are at high risk for the infections. Are you still getting the IVIG for the primary immune def. ?

Hopefully, they can get you cleared up. May take a really long time on antibiotics with the type of infections you have. They take a long time to "cure", Good luck and hang in there. Irish ;D
Title: Re: some observatations
Post by: Nathan on December 29, 2008, 02:18:25 PM
I dont have much else to add, but if you've been on 60mg of pred, you're not having a simple allergic reaction. The pred would stop that cold.
Title: Re: some observatations
Post by: kindandcaring on December 30, 2008, 01:49:57 AM

You are having a rough trot right now..Im willing and wishing you will see better days soon ahead.

Hang in there and keep making those Docs think.... they need to be giving you their full attention.