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Lionne posted 12/14/2013 20:45 PM

It's my sister again. I'm worried about her. She's frantic. Scared she is dying of some as yet undetected illness. Any and all suggestions will be appreciated.

It started in August of this year...when she came back from Key West..I don't know if that is significant (we live in New Jersey)

1) Severe GI infection, pain, diarrhea etc. ER said possible C-diff or Giardia, but later tests said no. Infection was seen on MRI.
2) GI distress continued on and off, alternating constipation/diarrhea. Cleared by Gastro doc. No Crohn's, no Celiac, no cancer etc. Colonoscopy and endoscopy and appropriate biopsies. Bentyl prescribed. Also Dexilant although she has lost 20 lbs and doesn't need it for GERD anymore
3) On top of this she gets Shingles-treated with acyclovir
4) Next she gets a UTI treated with Cipro
5) Develops swelling in mouth and on lips treated with Magic Mouthwash. There was one small ulcer, no other "sores."
6) Swelling gets worse, comes and goes. Stops Magic Mouthwash and Cipro.
7)Put on medrol and then prednisone because they thought maybe the lips were a reaction to the Cipro or the mouthwash
8) UTI is back. Treated with Sulpha
9) Lip and mouth swelling is bad, so are abdominal pains, rectal pressure. She feels like she is being "poisoned."

Blood tests are normal. They have ruled out all the "scary" stuff. Not thrush. Blood pressure, low to normal. Weight normal. She is 56. She has seen these doctors, most several times; GP, GI, ENT, Dentist, allergist/immunologist (waiting for those results), she sees her GYN on Thursday.

She has had MAJOR stress this past year. She is on Buspar and Ativan PRN. She's always had anxiety issues, this year has been exceptionally hard on her.

Could it be that this is all a stress reaction???

ThoughtIKnewYa posted 12/14/2013 21:01 PM

I don't know, but I find this interesting, so I'll be watching this post.

Sending good thoughts to your sister.

fireproof posted 12/15/2013 14:47 PM

Can't hurt but she might want to try a Psychologist.

Sometimes diseases can develop but this will help rule out stress.

Hope she feels better soon.

tushnurse posted 12/15/2013 15:34 PM

Honestly if they didn't do biopsies of her terminal ileum when they did her colonoscopy and she was as flared as now she could very well have Crohns. The fact that biopsies were normal but CT showed inflammation makes me incredibly suspicious. She would however see some improvement with the steroids.

If she was tested for C diff while on antibiotics then she can also get a false negative. Meaning she was on antibiotics so for that moment none of the c diff showed up in the stool sample. Uti isnt surprising if she's pooping her brains out. Also the steroids can worsen her anxiety too.

Honestly if it's an option I would start over with at a minimum a new GI Dr if not a whole team. She should have a full autoimmune work up blood work wise as well.

I suspect her stress and anxiety have triggered a autoimmune storm of some sort. If her Dr isn't giving her answers then she needs a new one.

FaithFool posted 12/15/2013 16:06 PM

So alarming, your poor sister.

I'm always hammering on about GMO food, and we are seeing so much of this kind of stuff lately it makes me wonder.

What was her diet like before she got sick?

purplejacket4 posted 12/15/2013 17:31 PM

Giardia often doesn't show up when doing stool samples.

The story is very suspicious for an autoimmune disease. Sometimes the initial biopsies of the colonoscopies doesn't find the problem. I would consider a rheumatology work up and maybe a second opinion from another GI doc. There could be something in the small intestine.

solus sto posted 12/15/2013 18:45 PM

Yes, I'm thinking autoimmune, as well--but wonder if there are some regional illnesses that should be considered.

I'd want her tested for antibodies to dengue type viruses. Dengue fever and its cousins are endemic to Key West. There may be other infectious diseases to consider--this is just the one that pops to mind for me. (It is uncomfortable, long-lasting, BUT NOT FATAL.)

I'd want her to see an infectious disease specialist, preferably (since she's been battling this a while without diagnosis) at a university-based medical center, where there are lots of good minds from all over the world in one place.

iwantamiracle posted 12/15/2013 19:22 PM

infectious disease and rheumatologist.....rule out infectious diseases and autoimmune....and def pych dr as well.....because even if it is something the stress and anxiety of it all could make it worse

Lionne posted 12/15/2013 19:50 PM

Thanks all. Okay, here's the plan, at least what I am going to suggest...

Wait for results of immunology studies, make sure they have tested for regional infectious agents
New GI!
Take all records to Univ Hosp where they have an integrated medicine approach and make sure they have a rheumatologist look at her.

To answer a question, she has always had a healthy diet, whole grains, fruits and vegetables, low on processed foods, very little coffee or alcohol, moderate fat, etc. Now she can hardly eat anything.

She has an appt with her IC tomorrow and gyno later in the week. She's going to request an abdominal US, not because it's likely but just because now she is scared they have missed something major, like ovarian cancer.

She was given a Rx for Zoloft but apparently that may be the cause of the GI flare...

brooke4 posted 12/15/2013 20:17 PM

I think that having an undiagnosed medical condition is very anxiety-provoking for most people, which can have a circular effect on symptoms.

That said, my own experience is that doctors *sometimes* like to hang a psychological label on things they can't explain. And if your sister is sensing that is what is starting to happen, I think she needs to find a new group of doctors. Many years ago, I developed symptoms not exactly like your sister's, but unexplained things, one after the other that were becoming gradually more debilitating. I spent months and months going back to the doctor, having tests, thinking they were taking me seriously.

The day my primary care doctor asked me how much my husband was working--the implication being that I was a neglected young wife--I walked out and found myself a new team, which consisted of a primary care doctor whose specialty was infectious disease, a rheumatologist and an endocrinologist. Together they figured out that I had Lyme Disease, was having an autoimmune thyroid storm (it was swinging between over and under active, which was the source of the constant sense of anxiety) and a B12 deficiency (I was a long-term vegetarian at the time and the other issues were causing absorption problems).

If your sister can be calm but persistent, I think it will go a long way towards helping her get diagnosed. I also think a good IC could help her manage her anxiety in the meantime--I'm convinced mine was what helped me stay sane through the nearly a year it took me to get things figured out. In my experience, when you're in the midst of it, each time they *don't* find something, it's reassuring, but a day later, you're right back in that world of confusion and fear, and that's really a terrible place to be.

One slightly more specific thought - she hadn't gone gluten free before all the testing, had she? Because if she did, the celiac testing won't have been accurate.

Hugs to you both. I know firsthand how difficult this is.

tushnurse posted 12/16/2013 08:41 AM

(((scardey)))

Remember to find out where they did the biopsies to say she doesn't have Crohn's. This is very very important. If it wasn't done in the Terminal Ileum then you can not definitively rule it out. PERIOD!!! Also goes for diagnoses of Sprue, they can do all the blood work and have negative results, but unless they did a tissue biopsy or the Duodenum you cannot rule it out.

The antibiody/autoimmune blood work can be very confusing and overwhelming and may not make much sense to anyone who isn't well versed in these labs, and that is why a Rheumatologist is so helpful. They know the ins and outs of these labs like you know your address and phone number.

Good Luck, and if you are going to a University setting next be prepared to tell your story 5000 times to residents, interns, fellows and attendings. And be ready to wait, hurry up and wait, and hurry up and wait some more.

Encourage your sister to be kind to herself in the meantime, and if she needs the antianxiety meds she should take them, if the depression meds aren't agreeing with her she needs to have something different. In fact an old one that is commonly used with folks with chronic health issue with little side effects and can help calm the gut and headaches is amitryptilline.

Lionne posted 12/16/2013 22:34 PM

Thanks all...I will pass the info onto her, and take care of her.

Love, SK