Gastritis won't go away, fasciculations & extremity sweating
Hello All,
I have had a litany of mingled/undefined issues for roughly 24 months. For context, I'm a 36-year-old male in the military, physically fit and no pre-existing or inherited conditions. In September of 2019, I had a bout of SIBO for roughly 10-12 weeks. I've had hallmark SIBO symptoms 2-3 times prior to this over a 6-ish year period. Each time, they cleared on their own and they were correlated with elevated stress (deployments, moving family & eating VERY fast for military schools). I also took a low dose of Doxycycline for deployments (21 months over a 3-year period, 2010-2013). However, on Thanksgiving of 2019, I had enough of the symptoms and visited our Physician Assistant (PA) overseas to discuss treatment options. I was given Cipro for 3 days (500mg X 2 a day) and had instant relief for about a week. The PA refused to continue treatment and I returned home for the birth of my son March 2020. All along I had SIBO symptoms (bloating, gas after eating, constipation, foul smelling gas/stool, etc.). After caring for my wife and newborn son, I began diagnostics in May 2020. This is where my journey really began....
All of my blood tests (CBC, Metabolic Panel, Thyroid, Kidney, Liver function(s)) were normal. On my stool cultures (parasites, bacteria, and Fecal Occult), I was positive for H. Pylori. I was immediately put on triple therapy (2 X antibiotics & PPI (Omeprazole)) for 2 weeks. Shortly after, I had a colonoscopy (June 2020) that was completely clear, minus a small hemorrhoid from the constipation. I was breath-tested for H. Pylori and treated again with 2 different antibiotics (October 2020) for the positive breath test. Again, I was given the same blood panels, urinalysis (including 24-hour collection; all tests were negative for any anomalies. A few days after my 2nd round of triple therapy for H. Pylori (October 2020), I started to develop peculiar symptoms. My hands a feet, which were always cold my entire life, began sweating and I had weird/unexplained pain in my neck muscles. I literally woke up one day in October 2020 with the sweating and neck pain. Meanwhile, I still had inconsistent bowel movements, mostly misshapen, somewhat soft, and putrid. I often had bowel movements that resembled my food, to include color and texture. In 36 years of bowel movements, I've never experienced this.
In February of 2021, my GP referred me to Neurology and G.I.. Neurology ran additional blood work and extensive imaging, to include CT with contrast of abdomen & chest, and an MRI with contrast of brain/spine. Additional blood work tested for STIs, Tuberculosis, Lyme Disease, and Varicella IgM. All were cleared with the exception of the Varicella IgM. At this point, I had terrible burning pain in my back left shoulder and sporadic burning pain under the skin in my rib cage. I had no Shingles lesions anywhere, so the Neurologist diagnosed me with with Post-Herpetic Neuralgia and prescribed me Gabapentin (100mg x 3 a day) for roughly 60 days. A few weeks later, I started to develop warm sensations in my upper abdomen and severe heartburn. If I had a glass of wine, beer, or coffee, the discomfort was more pronounced.
In April of 2021, we were conducting a military exercise in the field and I was forced to eat pre-packaged food, typically LOADED with sodium and preservatives. At this point, the heartburn and warm (turned in to burning) sensation, became unbearable. I was finally able to see the G.I. doctor in late May 2021. I took additional stool tests (including H. Pylori) and all was clear. I was given an EGD in early June 2021 and was diagnosed with esophagitis, and mild gastritis in my lower antrum. The G.I. doc prescribed me 40mg X 1 a day of Omeprazole. I did not drink coffee, alcohol or eat acidic things like chocolate. My esophagitis cleared up within 10 days and I never had esophageal issues again. However, I still had gastritis pain. If I ate small amounts of food and drank water, within 1.5-2 hours, I had burning discomfort in my abdomen. My G.I. doc left me on Omeprazole for the next year. We tried stepping down to 20mg a day, but my symptoms got worse. Even with a nearly acid-free diet, I still had burning in my abdomen. I also still had inconsistent bowel movements.
After seeing the Neurologist and G.I. doc, I was referred to a Rheumatologist (October 2021). My blood was tested for immunodeficiency markers and the standard CBC & Metabolic panel. All levels were normal and no inflammatory markers. B12 & vitamins were also normal. By this point (October 2021), I had developed throbbing/burning pain in my outer left thigh/hip. It would sometimes radiate down to my lower thigh. I also had pain in my genitalia that would come and go and random. I did notice the pain in my hip and genitalia were typically correlated. I was given several digital rectal exams and they were all negative. The Rheumatologist finally diagnosed me with Fibromyalgia in October 2021. I was given Lyrica (150mg X 2 a day) & Cymbalta (30mg X 1 a day). I was also still taking Omeprazole (40mg X 1 a day). We tried tapering again, but I would develop extreme abdominal pain.
In March of 2022, I was given a HIDA scan which came back clear. I performed additional full-spectrum organ tests, all negative. My GP also ordered a Lyme disease test again which came back positive. However, the Western Line Blot was negative. My GP said I must have a cold or something and that's what caused the false-positive. I was referred to pain management (acupuncture, yoga) as a last resort. In June of 2022, my G.I. doc performed another EGD and I still had mild gastritis in the lower antrum. She increased my PPI (Protonix this time) to 40mg X 2 a day. This made the burning sensation FAR worse. After 2 weeks, I decided to go back down to the 40mg X a day and the symptoms became tolerable. I was also given a cystoscopy for genital pain in June 2022. This was also cleared.
I sincerely apologize for the LONG post, but I'm at the end of my rope here. My hands and feet sweat constantly (I have to wear sandals or socks in my house to avoid slipping). I still have the unexplained pain in my neck, back of my head, left thigh and genitalia. I still have inconsistent bowel movements (smelly, oddly shaped and sometimes covered in mucus and fluffy). I also still have burning sensations in my stomach which I attribute to unrelenting gastritis. No matter what I eat, 4oz. of unseasoned chicken breast, low-acid fruits, etc., I still get the burning sensation 1.5-2 hours later. My ears ring randomly and I have fasciculations (muscle-twitching) all over my body at random. I get the twitches just under my skin in my eyelids, deep in my thighs, arms and legs and face round my jaw. I can only describe it as fast vibrations, like a taught rubberband being pulled then let go. These symptoms have persisted for nearly 2 years and they DID NOT start until my SIBO-like issues in late 2019. Since 2021, I constantly have viral infections, usually respiratory (including sinuses). I'm fully vaccinated for COVID & boosted, but tested positive with symptoms, twice (January 2021 & January 2022).
I would appreciate any recommendations on testing/diagnostics... Again, I'm at the end of my rope. I have 4 kids and I struggle EVERY DAY to keep a smile on my face. I'm constantly in some form of discomfort or pain and my daily live has ground to a nearly a halt. None of this runs in my family, even dating back to my Grandparents.
Thank you!
Summary of Symptoms:
-Inconsistent bowel movements (mostly mild constipation or oddly-shaped foul-smelling stools)
-Sweaty hands and feet
-Foul-smelling body odor while running/working out (never even used to wear deodorant prior to this)
-Unexplained tissue/muscle pain just under the skin or deep in (left thigh, both sides of neck and genitals)
-Burning in right abdomen 1.5-2 hours after meals
-Unexplained foul/hot gas; I eat the same healthy meals everyday, yet randomly produce hot/smelly gas
Medications
-40mg X 1 a day of Protonix
-150mg X 2 a day of Lyrica (seems to help with the nerve pain)
-Tapered off 30mg X1 a day of Cymbalta (had withdraw symptoms for roughly 10 days; miserable)
Diagnoses
-Fibromyalgia
-IBS
-Mild antral gastritis
List of Diagnostics
-Nearly a dozen CBCs, Metabolic Panels & Organ Function Tests (All negative)
-STIs (All negative)
-TB (Negative)
-Lyme Disease (Positive), but (Negative) Western Line Blot
-IgM Varicella (Positive), but no Shingles lesions
-Immunodeficiency Markers (Nuclear Antibody, ESR, RA, etc.) ALL NEGATIVE
-Cystoscopy (Negative)
-HIDA Scan (Negative)
-Colonoscopy (Negative)
-EGD (Antral Gastritis both times, GERD once)
-Radiology/Nuclear Medicine (CTs, MRIs, and X-Rays all Negative)
-EMG for Neurology (Negative)
-Nearly a dozen Stool Cultures (All Negative, sans H. Pylori in 2020)
Interested in more discussions like this? Go to the Digestive Health Support Group.
So what do you give your patients that test positive after microbiome tests ?
Is yours a stool test or blood test ?
I just had very extensive bloodwork done , also did ova & parasite stool testing and reg stool tests .
I have 7 diagnoses, tried everything. Still I suffer . It’s chronic 10 years .
I’ll look into that ! I’m still suffering 10 years now .
I’ve done all the other stool tests. Nothing showed up .
I do have 7 diagnoses, but nothing helps me .
I’ve tried it ALL .
Thanks …
It’s nuts 🥜 the amount of money , tests , time we have all taken to get help for this . I’m on my 6 th Gastro Dr in 10 long hard years!
We are just another number to them .
Praying 🙏 for relief of some kind for all of us soon . It’s not in our HEADS !
His symptoms started in 2019 prior to there being any vaccine available for COVID-19.
Mark, I am in the military as well and have been going through every single symptom you have mentioned in your write up, every one. plus an autoimmune disease (ITP) all following my Pfizer vaccine. Please respond back to me I would love to talk!!
Omg i taught i was going crazy i read all the comments and is crazy to think i have everything you said i been in the hospital more then 40 times in this last year same symptoms including random chest pain. Doctors say it gastritis with a bit in my head but i know is not in my head specially reading that you feel the same things as me. No matter what test i do it all comes negative i even ended up doing all test for chest because sometimes the pain felt like a heart attack also all negative. I dont know what else to do i pretty much cant work because my head is on fire and with the sweat and the pain i cant do anything but stay home and complain about the pain and no i dont have the vaccine for covid so that the only thing that is not common to what you had but i am 33 year old also this all started about a year ago i got a huge headache and ended at the hospital they gave my medication got home it went away for a week and then started with nausea and stomach pain i dont drink at all or smoke so im not sure what it is doctor say it can be anxiety but is not because i can be normal a few hours in bed and out of nowhere everything starts i also take omeprazole 40 mg ones a day and pepsid 20 mg at night also have clorazepam if i feel really bad. I get these weird huge burning sensation in my head like my head is on fire nothing helps and i done all the test also everything negative please if any updates please let me know
@mark03952 GO SEE A NATUROPATHIC DOCTOR ASAP! THEY WILL GET TO THE ROOT ISSUE AND NOT JUST THROW A BUNCH A MEDS AT YOU TO BANDAID YOUR SIGNS AND SYMPTOMS. THE MEDS ARE MAKING EVERYTHING WORSE! PHARMACEUTICALS HAVE WAY MORE SIDE AFFECTS THAN ACTUALLY HELPING YOU! ITS NO WONDER ITS A **TRILLION DOLLAR INDUSTRY!?! I PRAY YOU FIND SOMEONE TO CURE ALL OF THIS!
Hi Mark and everyone who has commented here. I understand your frustrations with no test results coming back positive, or when a test comes back positive, the treatment doesn’t fix the chronic pain and symptoms. I have struggled with similar issues for over 50 years. Here is what I have learned in the past 3 years. My journey is not complete, but hopefully this information will help all of you consider a new perspective that might help in your healing. 😊
Possible cause: Ileocecal Valve Syndrome/Dysfunction
Articles
drsflink.com. “How your spine can affect your health”
acupuncture-westlondon.com. “Ileocecal valve dysfunction”
drhagmeyer.com. “Healing the ileocecal valve and why its important in sibo”
These articles provide an overview of what ileocecal valve syndrome is and how to treat it.
Mark, your symptoms are very similar to mine. When you spoke of spontaneous neck pain, I knew this was coming from your GI. What is happening is referred pain from your GI, probably your ileocecal valve. Pain excites the fight/flight response which overstimulates the vagus nerve, which causes the ileocecal valve to spasm. The spasms create dysbiosis, bacterial overgrowth long-term, and poor bowel movements. The pain then competes the loop, re-exciting the nervous system. Antibiotics, steroids and antihistamines irritate the autonomic nervous system as well as disrupt the intestinal lining, making it more permeable. There is even more that feeds into this loop, like head and neck injuries, but this is the basics. See the article above on the spine.
What to do:
GI Mapping test - Diagnostic Solutions Laboratory - This company will help you find a provider in your area. This is a stool test you do at home. It is expensive (about $600), but it tests for over 80 pathogens. They also work with your provider to create a custom treatment plan. This was the beginning of my healing journey. With this test, you will know exactly what is going on in your micro biome.
If possible, nutrient deficiency test and food sensitivity test. All of these you should be able to get from your provider above.
If these tests are not an option right now:
Get on a good multivitamin, vitamin D3, fish oil, and magnesium glycinate. Get on a good probiotic. Pure Encapsulations is a good brand, and you can order directly from their website. They offer all of these things. It may take some time to find the right probiotic without the GI Mapping test, BUT you can start with a basic one and see how you do.
Diet: avoid all sugar, dairy and gluten. I know, this is hard. But gluten will irritate and already irritate system. Avoid hard, fibrous foods, like chips. Take a break and purée your food for a few weeks. Add solids back in slowly. Give your ileocecal valve a chance to heal on its own. Chew, chew chew your food, even if it is puréed. I know! Super hard to do, BUT I had symptom relief on puréed food. Adding it back brought back symptoms. I have found gluten free oats and white or super soft brown rice work best for me.
Abdominal massage: The links above mention their abdominal massage for ileocecal valve. I didn’t like their recommendations. Slow, gentle pressure is all you need to do starting low right and working around to low left. Make sure to breath deeply. It may take a week or so to see results.
Pelvic Floor Therapy: If you have had this problem for a long time or if you have had a head, neck or spine injury, this would be a great option. The fascia in the abdomen is what causes the referred pain in the neck and elsewhere. Loosening this up has helped my quality of life. But if this is not an option, learn how to work your diaphragm through proper breathing techniques. There are videos on YouTube to help with this.
This is all I have for now. Please reach out if you have questions. Just remember, all I can offer is information I have learned that has helped me. I am not a doctor. 😊🌷🙏
Please get checked for bowel blockages which can give symptoms of dirrahea & constipation. Also body sweats & severe body pain seem to be the bodys way of dealing with these blockages. I know this as I also suffer similar. Had all the tests imaginable over the years. Also get a good Collorectal Surgeon to check the main artery in your gut that runs length of the body to your heart. Please dont ignore this, it may show an answer. Good luck Donna Australia
It's like I typed this post myself. I have to exist in such a specific way to keep myself from having too many symptoms. I deeply understand your physical and spiritual pain. Let's both continue to do what we can to help ourselves. I will say I went through EXTREME stress when my journey began. I think in some ways that stress changed my body permanently. Just guessing, but that's how it feels. My current goal is to lose weight and eat in smaller portions. Can't drink coffee or drink like I used to. :(. Feels good to rant and bond. Thank you