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Thu, Jun 11 6:37am · Extreme fatigue and pain in Spine Health

You mentioned the pinched nerves with just about every area in your back. Have they looked at or tested for tethered cord syndrome? It’s very rare but is beginning to get some traction regarding a basis for chronic fatigue like syndromes. Dr Nancy Klimas at Nova Southeastern in Florida is an industry leader. Also, Jennifer Brea. My mother has chronic fatigue and has just about everything you have mentioned. How is your immune system? Do you constantly run temperatures? What about vision, digestion, food sensitivities, allergies, light sensitivities, etc?

Tue, Jun 2 6:23am · IBS, CFS, or autoimmune in Digestive Health

Hello,
I wanted to reach out regarding a snopysis of my symptoms in the hopes of figuring out where to go next. I am a 39 year old female that used to run 10-15 miles per week. My symptoms include stabbing pain under my left rib cage that will move across my abdomen to just above my belly button. The pain is there everyday. Sometimes it’s manageable and other times its excruciating. Also, I regularly have nausea, dizziness, diahhrea or constipation, ear pain, headaches in the back/middle part of my head, brain fog, foggy vision, chills/feel cold without a fever, low blood pressure, and muscle fatigue and spasms. I also have extreme fatigue yet also have periods of time where my body just won’t shut down leading to periods of sleepless nights. This has been going on for the better part of 2 1/2 years. I have had tons of bloodwork performed, brain scan, MRCP of abdomen, food allergy and sensitivity testing, colonoscopy, endoscopy, thyroid testing. Everything has come back normal except my lipase level is non-existent and my secretory IgA level is low and autoimmune gastritis. Also from 2 years ago until now…I’ve developed severe allergies to environmental items and also some food allergies (yeast, peanuts, tree nuts). I’ve also worked with a nutritionist and figured out that the only relief I get is if I eat just plain boiled potatoes and baked chicken. I’ve been eating that for the better part of 5 months but know long term it’s not healthy/sustainable. My GI doc has settled on IBS. I’m not totally convinced because of all of the “other symptoms” and the fact that ALL food seems to aggravate whatever this is. Yes, even white and brown rice, quinoa, oatmeal, gluten, milk, soy, bananas, sweet potatoes. All food period. I’ve been referred to our university healthcare system but can’t get an appointment (yes…even with doc referral) because of COV-19. Also, as a background I had really bad food poisoning about 3 years ago and had my appendix and gall bladder removed. I’ve lost 20 pounds since Oct 2019 and am flirting with being underweight. The only medicines I take are VSL #3 (probiotic) because I can’t tolerate even yogurt, lots of multivitamins, and a pancreatic digestive enzyme supplement. I even can’t take Tylenol or ibuprofen for the headaches because it flares the diahhrea. I can’t shake the feeling that something more is going on given the development of allergies, etc. It just feels like a complete breakdown of my immune, digestive, nervous systems etc.

Sun, Jan 26 9:13am · Trying everything - Sick of feeling sick in Digestive Health

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.