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Medical opinions sought, please.

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Lionne posted 12/4/2013 09:05 AM

My sister is having a hard time. One thing after another is going wrong. Doctors don't seem to know what to do and have seemingly now dismissed her as a complainer. She's miserable and just wants to feel better.
It started in late July with an acne cyst. Doctor gave here an antibiotic. She developed explosive diarrhea. They called it C-diff, later, not C-diff, probably giardia. The diarrhea persisted. Weeks. She is in horrible pain for these weeks, doctor just talks about adding fiber to her coffee, letting infection clear, etc. She can eat less and less, loses 20 lbs. in six weeks. She had a colonoscopy. Possible celiac disease, blood test confirmed two out of three markers. She next got shingles. Now she has an endoscopy, no celiac, just IBS, verybad GERD, but she can't take PPI, they'll exarcebate the other problems. She next gets a UTI, is afraid to take the cipro, can't eat yogurt or any probiotics, they give her the runs, and yesterday, developed huge swellings on her lips and tongue, doctor said Coxackie but their are no blisters,just swellings and she has no contact with kids.
She is 56, thin, used to eat very healthy diet, now she eats whatever she can tolerate. Blood tests were normal, biopsies of bowel and for celiac were negative.
Any suggestions?

Lionne posted 12/4/2013 09:06 AM

Besides changing PCP. That's already on the program.

tushnurse posted 12/4/2013 09:34 AM

Um it sounds like she is having some sort of autoimmune crisis. Often when something is triggered as a response to being sick, the first round of antibiotics and the C-Dif, it weakens the immune system and can cause all kinds of crazy things to happen, and most likely the Shingles Flare was related to that.

However. The GI stuff is really concerning. IBS can be bad, and it can be difficult to manage, but the one thing that seperates it from other true GI disease like Crohns', ulcerative colitis, and Celiac is there is no autoimmune response. I would definitely make her get a different GI Dr. start from there. She also needs comprehensive labs from everything from basic chemistries to a full autoimmune workup, with antibody studies, and ANA, CRP, C3,C4 compliments, and so forth. If she had just the beginnings of Crohns when she had her colonoscopy biopsies are notorious for being negative, especially if they were done of the Terminal Ileum, the last section of small bowel that connects to the colon. If the Dr was unable to get in there, and it can be tricky, you may not have answers.

The first real test to see if it is autoimmune in nature without all of that is to give her a steroid burst/taper, and see if she improves and if she does then you most likely are dealing with something like that. If she is continuing to loose weight, and is highly stressed then she needs meds to help calm her nerves as well. She should be focusing on a low residue high protein diet as well. Less work for her body to break down, and give her what she needs.

Good Luck...

MissMouseMo posted 12/4/2013 09:36 AM

I won't be much help, but for the UTI cranberry juice is the remedy rather than yoghurt (not the "cocktail, that has little real juice, but real juice) or extract tablets. I've never tried them but I just read they are out there and plan to use them if the problem ever arises again.

I'm so sorry for her. I wish I had some more wisdom instead of a suggestion for the easy, small thing.

Maybe her PCP could be persuaded to refer her to a gastroenterologist?

No one should be made to feel bad for being sick. Thanks for advocating for her.

Pentup posted 12/4/2013 09:38 AM

I think she should push for more c. Diff testing. They are doing fecal transplants for chronic c. Diff. Gross but it works.

Lionne posted 12/4/2013 09:49 AM

Well, they thought it was C diff, assumed that for weeks, culture came back negative. They now only guess the initial GI infection was Guardia. The diarrhea persisted, then the other symptoms.
Auto immune response makes sense, she had some blood work for that, by no means a complete workup. She loves her GI guy, but he really seems to be totally unconcerned that she is still sick after 3months.
Tush, I took notes, I'm putting on my big sister pants and going with her today. Thanks!

Too_Trusting posted 12/4/2013 10:45 AM

Was she given medication to eradicate the Giardia? Not to compare your sis to my dog, but that's the only experience I have. I had a dog that actually HAD giardia, yet it was missed during initial testing. The Dx was Inflammatory Bowel disease and she was put on high doses of steroids. I was watching my dog get sicker by the day. I finally consulted a different vet specialist and lo and behold, she tested positive for Giardia. She was put on a higher dose of Metronidazol (Flagyl) and the Giardia cleared. However, the time that elapsed without the correct Dx, combined with steroids that compromised her immune system allowed the Giardia to ravage her GI system. Consequently, she was then LEFT with Inflammatory Bowel Disease BECAUSE of the missed Dx.

Again, not trying to equate your sis with a canine, but her story sounds eerily similar. If she was treated for the Giardia, make sure they did a follow up test to confirm the giardia was eradicated. Don't know the human equivalent, but my dog was finally diagnosed using the ELISA test that tests for enzymes present with Giardia, rather than looking for the organisms in a stool sample. Supposed to be a more accurate test.

Lionne posted 12/4/2013 11:07 AM

Yes, no Giardia. She has intermittent constipation/diarrhea, has to take imodium to get out of the house to go to work, and be extremely careful about what she eats to drink.

I'm considering all of this and taking notes to ask the doctor this afternoon. It makes sense that it is a weird autoimmune thing that started with the initial infection. A few years ago, after a lifetime of NO allergies, she developed allergies to all hair products, including shampoos and her beloved hair dye/mousse/fluffy stuff. She's always been fancier than I and I don't really know what she was doing for beauty but she always looks great!

hathnofury posted 12/4/2013 13:32 PM

While I also think she has some autoimmune issues going on, just wanted to throw out something similar that happened to me. This was 20 years ago, but I had alternating runs/constipation for a month despite doing probiotics, etc. and went to a clinic. They took a stool sample, and IDK what bacteria they found, but they definitely tested the bacteria response against all major ABX. So from that test they found that it was resistant to ALL ABX except one. This allowed me to take the right drug the first time, and it cleared up the problem right away. It is entirely possible she has autoimmune issues AND a GI infection that is resistant to the drugs she has taken.

Lionne posted 12/4/2013 16:40 PM

Thanks, all. This doctor (I went as her advocate) thinks she just has IBS, triggered by the initial infection, exacerbated by high stress levels, coupled with a bout of bad luck resulting in the domino effect of shingles, now, uti, reaction to antibiotics, etc. She is on prednisone to counteract the reaction, and the doctor is recommending elavil or something similar, as well as changing up her bentyl, which isn't working for her IBS.

Getting old is not for the faint of heart.

nowiknow23 posted 12/4/2013 16:45 PM

((((scardykat's sis)))) I hope she gets quick relief with this new course of treatment, honey. It sounds like pure misery so far.

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