Hello,
Hoping to reach out for guidance as here is what has been going on. About 6 months ago had a bout with what we thought was IBS. After a few days I felt better but about 2 weeks later minor symptoms came back regarding cramps after eating, weakness, yellow diarrhea. Saw a GI and recommended following a low fodmap diet. Had a little improvement for a few weeks but then symptoms slowly returned. In October had another bout where diarrhea is horrible (always yellow, pungent, greasy looking and sometimes green mucous). The diarrhea will last for days and during this time I have muscle twitches, pain in abdomen and under left rib cage, lots of belching, dizziness, nausea, headaches, brain fog, every muscle and bone hurts, and utter exhaustion. After about 2 weeks improvement started which was short lived as the symptoms have returned with a vengeance and have been active since early December. The symptoms are extreme thirst, ringing in ears, headache, nausea, muscle twitches/cramps, stabbing pain under left rib cage, orange/pungent diarrhea, dizziness, tiredness (will sleep 10-12 hours per night and wake up feeling like I haven’t slept), followed by the inability to sleep or stay asleep the next several nights, brain fog, passing out when standing up, sensitivity to smells and bright lights. It feels like a constant bad cold/flu (without the fever) that just won’t go away. I’ve also developed extreme sensitivity to just about all foods and can only tolerate puréed chicken and potatoes. I also get IVs three times a week to replenish electrolytes, B-vitamins, C and D vitamins. I’ve lost 30 pounds since October and constantly itch. I’ve seen tons of doctors who have run lots of bloodwork (CBC, metabolic panels, thyroid levels, A-1C, MRI of my brain, CT scan of abdomen/pelvis, GI stool map, colonoscopy, endoscopy, CT of heart, ultrasound of thyroid, X-ray of my spine, cortisol levels, ESR levels, CCP levels, mono, Lyme disease) In all the testing the only abnormal things noted were low lipase levels (routinely a 4 when anything over a 10 is considered normal), blood pressure drops to 80/60 upon standing, I have the MTHFR gene mutation and tested positive for the gene that leads to gastritis/parental cell antibodies/pernicious anemia, tested positive for h-pylori, and my secretory Iga levels are non existent. The weird thing is that I underwent the antibiotic treatment for h-pylori and ironically the 10 days I was on the antibiotics I felt normal. I feel like I am slowly dying and keep a detailed journal of daily symptoms, foods eaten, etc. in the attempt to figure out what’s going on. In an attempt to rule out medications...I am not taking any meds aside from a lot of multivitamins (which aren’t absorbing hence the IV’s for nutrients 3 times per week), Imodium, and a digestive enzyme. As you can imagine my anxiety is through the roof. I was prescribed amitriptylyne to try and calm the anxiety, slow the diarrhea, and maybe actually have a restful night of sleep but guess what...I had an allergic reaction to it. Before this started I worked full time as an accountant, and worked out 3-4 times a week and would run 12+ miles per week. I used to be healthy, active, social. Getting out of bed is a struggle and when I do I am exhausted after a few minutes. I also have a 3 year old daughter that I would like to be involved with. Her favorite words are now “my mommy doesn’t feel good” which breaks my heart. I am trying to get referred into our local university hospital system to see a pancreatic/GI specialist. I have petitioned both Mayo Clinic in Jacksonville and Rochester for both the GI department and internal medicine and have been denied for both. What does it take to get into a Mayo Clinic facility? What am I missing? Any thoughts or next steps, or any ideas of what this could be is greatly appreciated.