I just wanted to fill in every one....sorry I haven't been on here lately. I am trying to keep up with every ones posts.

This week my son was in the ER twice and had two surgeries, a course of IV antibiotics and we are still struggling with some kind of infection that seems to be a real tough one. The docs are vacillating between a dental and a soft tissue issue. He is miserable, and I am getting tired of the ER...every day last week it was either the ER or, dentist or ENT. His face was twice the size of normal. He never complains, but he called me one day to get him to the ER as soon as I possibly could. I was shocked when I got to his place and saw what he looked like! We still don't have an idea of exactly where this infection got started as all these docs seem to disagree. I have a hunch his antibiotics will be changed on Monday.

Anyway, I do have esophagitis, and after being told candida was visualized...it came back negative...go figure? What exactly was it he saw other than lesions due to esophagitis? I do have a fungal fingernail which came on really fast. My finger hurts though, and it was my impression that fungal fingernails are not painful. I have a sinus infection which I deferred treatment on while biopsies were pending. I will get that treated now, and also get concurrent yeast treatment of some type, preferrably the least toxic. I was also told my duodenal biopsy was negative for Celiac. No cancers, which I wasn't really thinking was a possibility.

So I was told to take Prilosec for the esophagitis, but I have tried that over the months that this has bothered me and I am unimpressed with proton pump inhibitors....I calmed it down a lot over the last few weeks with tons of yogurt, so I am going to stick with that and probiotics. I prefer that. The tennis ball feeling is down to a marble feeling and I can swallow again and it no longer feels like a cardiac arrest. This has happened off an on for several years, but never this bad, and I am not AS infested as I was thinking. Which is good thing.

I assume this is more autonomic neuropathy, the same stuttering and stopping of the process until it finally peters out for good, as it has in other places in my body. Not particulary comforting, but, at least it isn't a deviation from what the docs were thinking, hereditary. At least we are on the same course as we were. I do plan on pursuing the testing from Athena as well, if I can get it ordered.

Anyway, I am OK if you don't hear from me....and I am trying to keep up with all the posts.

Oh and the doggie on the ice....he is fine...he was basking in the warm sun today when we drove by. Winter gave way to a spring day and we hit 60, so the doggie was in 7th heaven...here on earth. We were happy to see him.

Hang in there every one.... I have read your posts and see that many of you are going thru some very difficult times. My thoughts are with you, all of you.

Hi Cyclelops,

I am sorry life is so stressful for you right now.

I hope the source of your son's infection is clearly identified and very well taken care of!

I also am glad some issues have been further clarified for you and you know how you'd like to proceed in addressing them!

I have been hoping to have a short bicycling "exchange" sometime, as I am a cycling fan, too! No rush on this though! First things first!

I will be offering positive thoughts and prayer for you and your son!

Take care!

I can't imagine how much pain you are enduring in order to take care of things.

Somewhere I missed the post where you told us you have an inherited neuropathy. I'm so sorry I missed it and didn't comment.

I suffer thru the yeast problems continously. Seems to be part of the territory of Sjogren's. And cutting back on sweets and lots of yogurt seem to be my best way of handling it too. I've used yogurt on both ends.

I hope your son improves and you start feeling better soon.
Billye

So sorry to hear about your son. More stress on top of old stress. I hate it when they can't figure out what is going on or causing something... Isn't he the one getting married?

I have had quite a time with candida, because I am on Prednisone and now every other day antibiotics. I can tell when the gi part acts up. My gut swells up like a toad.

Hope you get some answers soon.
Cathie

By the way, I read a couple of home remedies for nail fungus on that site People's Pharmacy. Plain Listerine soaks (not blue) or Vicks...

I haven't had hereditary PN diagnosed for sure, but the doc, has told me several times, he feels that this is an autosomal dominant PN...however, there are some tests that need to be run for the known hereditary PNs...it is still possible that even if those come back normal, I could still have a hereditary PN. There is a cost to these tests and I think some reluctance on his part to order them.

Interestingly, my son, has had two dentists say his issues are not dental...but something with soft tissue...and the last one, he did say potential salivary gland, parotid gland issues....hmmm??? sound familiar?? So he is still struggling with this...we will work thru it. He has had his gum and several teeth cleaned out, they drilled in there, and the dentist does not see this as the cause of the infection. He is still in pain and swollen but not like he was. Yes, this is the kid who is getting married.

They extracted almost 2ccs of pus, with a needle and then cut open his inner cheek and gum and more fluid and pus came out.....he has been filled full of antibiotics, but the infection is receeding rather slowly...well, we are keeping an eye on him. I just find it interesting that he has issues with his salivary gland tissue, and I have too, but they can't seem to define what those issues are....right now, he is just infected...so that is the focus. He has seen either a dentist or ENT every day last week, more to come this week.

I have chronic sialadenitis, which the docs tell me is PN related, as my docs keep telling me I can't have Sjogren's as nothing is 'inflammatory' and my blood is negative, and I am so sick of being on that merry go round. I have the dry eye thing but they say it's my PN. My immune system could be shot from Lyme disease too....Lyme can wipe out your entire immune system. I dunno.

Eh it is always something. I had a finger go fungal in less than a weeks time or so...and it hurts too, inside the finger, so I will have that looked at....I will get the sinuses taken care of this week too, maybe that will help my energy level which is zip right now. However, they better treat for yeast while they are at it, if they give me antibiotics or I will be sick from yeast....ugh...I need balance.

I have tried proton pump inhibitors in the past and it doesn't seem to affect the esophagus stuff....I think it is neuro in the esophagus, at the root of it...I do think the yogurt being poured in there several times per day, helped.

Deja

I hope to be on my bike this spring, but we will see how things go....it is certainly my big goal....right now bike is on the windtrainer, and I was doing OK for a while...then had a few issues....this too shall pass. I am no match for even a slow dog anymore tho, and I am too slow for any one to suck my wheel, these days.

Oh my goodness, you poor thing, and your son is getting married?

God Bless his dealing with all this stuff. It's got to be driving you up the wall.

Well, we are all praying for you and for your son.

Here's hoping it all gets done away with and you can look forward to a nice wedding and a nice reception.

Keep that image in your mind.

Swollen Parotid, infected salivary gland......need I scream Sjogren's??!! Chipmunk cheeks and pain pain pain. I'm yelling here!!! Did they ever do a lip biopsy on you Cyclops? Seems like I do remember one. What was the verdict? You know I'm sero negative. Still sero negative after 4 years. And it's a progressive disease. My neuropathy has gone from uncomfortable and painful to out the roof. I'm probably due an uptick in the Lyrica but can't, it made me so sick when we tried to raise the dose.

I'm wishing and hoping your son will soon get better.

Billye

Wait a minute-the swollen parotid is YOURS or your son's?

Sounds like he has a parotid infection, from what you are describing. I know that the parotid can get swollen without infection from a duct being plugged with a stone, which forms from the saliva. They can get huge, and I'm sure infection is a big risk if that's allowed to continue. But I'd think an ENT would recognize that and know what to do. This sounds like a nightmare for him. And you.

Parotiditis, chronic sinus infections (dry sinuses?), neuropathy--and they're not sure about sjogren's? Well, when my sinus guy last yelled at me for not spraying my sinuses enough, and I told him I was worried about sjogren's, my mouth and nose are so dry, he said that in that case every patient of his would have it. So maybe not.

But I do have fungal sinusitis. Quest can culture for fungi now, didn't used to, but Mayo Clinic is the best place for the doc to send the tissue. Their lab cultures for everything. Including the culture for acid fast bacilli--TB like organisms, which I now have.

For the fungal sinusitis: I irrigate with amphotericin, which is made by a compounding pharmacy, and take Diflucan. I get liver tests monthly to make sure the diflucan isn't harming my liver. So far, so good.

I'm on lots of antibiotics for the atypical mycobactera, and I take a probiotic with each dose. My doc says that you get best results taking it WITH the antibiotic, even though intuitively you'd wnat to take it in between. It has to do with having thousands of the good bugs in the presence of hundreds of the bad bugs, and the antibiotic killing all the bad ones, but just a percentage of the good. If you take it in between, the antibiotic gets to kill them both off. Got me! That's what he said.

I think a lot of us here have both sinus problems and pn, and I wouldn't be surprised if dryness wasn't one of the factor.

Hope you and your son get through this; sounds awful.
All my best,

Are those stones actually caused from plaque buildup? The dentist here says that plaque buildup on teeth can be common in Sjogren's.

Cathie