It has been 7 months and I am desperate. I am a 24 year old female with no history of chronic illnesses except for the past year. In the beginning of January 2010, I flew down to Florida. On the plane my ears didn't pop and I got a severe sore throat. I saw a doctor there who gave me some antibiotics. Took them the whole time I was there. Once home I didn't get better. For the next 3 months (beginning of April) I was on 4 more rounds of antibiotics for what was diagnosed as a bad sinus infection. The last three weeks or so of this I was having at least one nose bleed a day, due to how raw my sinuses were at this point. I had never had a sinus infection before in my life.
For about a month things returned to normal, save for a few small bouts of upset stomach that were abnormal for me but I figured every one gets one every now and then. End of April I got a bladder infection and experienced severe pain in my right mid-back. I went to a Patient First Medical Center and was told it was a bladder infection and was given more antibiotics. This seemed to help for a week or so, but shortly after my world started falling apart.
On May 15th I started feeling sick - something was off, but I didn't really put too much thought into it. The next day I was very nauseous but went to work thinking it would pass. It didn’t. It got progressively worse as the day went on. The next morning (Monday, May 17th) I threw up for the first time in 15 years and had horrible diarrhea. I thought it to be a stomach bug or something and it would pass, but again, it didn't. That following Sunday I went to a Patient First again and was told it was gastritis - it would go away on its own but that I should see my primary care doctor.
The next day I saw my doctor who put me on Bactrim to see if this would clear it up. A few nights later I felt so sick and weak that I went to the ER where they did a CT scan of my abdomen. They found nothing remarkable except my mesenteric lymph nodes were “reactive” so it was diagnosed as mesenteric lymphadenitis and I was told it would go away in a few days. It didn't.
Ever since then I have been battling a debilitating nausea, extreme fatigue, inconsistent bowel movements, an orange coating on my tongue and chills with NO fever that I can tell (I take my temperature a few times daily now). And if this is any form of IBS it isn’t classic and IBS is a reach even for my doctor to say. I have no cramping what-so-ever and having a bowel movement sometimes brings the nausea on. My body temperature goes all over the place. It can go from 96.0 to 97.8 but always below the norm.
I have been to a gastroenterologist, my primary and a surgeon numerous times. I have been put on antacids with no change. More antibiotics. I have had a colonoscopy, endoscope, small bowel follow through, ultrasound, abdominal CT at ER, a head and sinus CT, a stool sample to test for a few contributing parasites or bacteria, numerous blood tests ruling out HIV/AIDs, Chrones, celiac disease, Addison’s disease, colitis, H Pyl., Salmonella, Shigella, Campylobacter, Staphylococcus, Giardia, Cryptospor, C diff., Lupus, hyperthyroidism - and had a stomach emptying test.
I have no known allergies, and no previous health issues except for symptoms related to what we thought/think is hypoglycemia. My liver and kidney function tests have come back normal. I even had the Mirena birth control IUD removed early on in hopes this was messing me up. Nope. The only things that have come back abnormal are as follows: I have unintentionally lost almost 40 pounds, I was told I had chronic endometritis and took a small dose of vaginal cream for what I was told was a small overgrowth of bacteria (not yeast). My C-reactive protein was very high at 9.1 in a bracket of 0.08-3. and is still elevated after 4 months from the original test and 2 months after surgery (between 5 and 6) I had a HYDA scan with CCK injection and my ejection fraction was right around 30%. The injection did not make me feel more nauseous or cause pain. I have had only minor discomfort in the gallbladder area. However, as this was really the only abnormal finding, the doctors suggested I have my gallbladder out. I had my gallbladder removed in October (a little over 2 months ago) after a lot of soul searching and research as I didn't want to rush into anything. The surgeon said the bile was sludgy and there were signs of inflammation so it seems like it needed to come out. I felt well for a few days and started trying to eat fairly normally again (safely of course - no fried foods, no fattening things). The only thing that stayed was the bright orange tongue coating on the back of my tongue and a slight burning in my whole mouth. I have never had indigestion let alone problems with acid reflux. I have been on prilosec with no change twice and I don't have the tell-tale chest discomfort of acid reflux (both rounds before the surgery).
However, about a week and a half after the surgery, things started getting worse. I now feel sicker than any other time during this whole ordeal. Nausea, weakness, fatigue, heavy menstrual bleeding, moderate constipation (only an issue since gallbladder removal) and orange coating on tongue (every morning when I wake up my tongue is actually white and swollen, with scalloped edges). I spoke with my surgeon who said it doesn’t sound like anything related to the gallbladder or its removal.
At this point now, nobody seems to know what the next step is.
I know I have had one heck of a work up and was blessed that my doctors were willing to stick with me but I am at the end of my rope here. I am only 24 years old... Please help me.