Gastritis won't go away, fasciculations & extremity sweating

Posted by mark03952 @mark03952, Jul 23, 2022

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.

Hi @mark03952 and welcome to Mayo Clinic Connect. My goodness, you have certainly been through the ringer. I would be remiss if I told you that we have any members that are going through something similar. I would be fed up , too.

I know you stated that they tested you for Lyme Disease and it was positive. Were you treated? How long ago was that test done? There are some eerie similarities between what you described and the list of Lyme symptoms below.

– GI involvement may present as gastritis or abdominal pain (mesenteric adenitis).
– Gradual onset of initial (viral-like) symptoms–this often makes it difficult to pinpoint when the infection began.
– Multisystem–almost always, in disseminated stages, involves more than one part or system (i.e., joint pain plus
cognitive dysfunction).
– Migratory–first a knee will hurt, then over time this may lessen and the elbow or shoulder acts up, and later
the joints calm down but other symptoms worsen.
– Stiff joints and loud joint crepitus, especially the neck (“Lyme shrug”).
– Tender subcutaneous nodules along the extremities, especially outer thigh, shins, and occasionally along the
triceps.
– Rapid response to treatment changes–often symptoms improve within days after antibiotics are begun, but
relapses occur also within days if medication is withdrawn early.

If you don't mind me asking, where are you getting your treatment? Are the multiple doctors talking to each other or are they all separate specialists?

REPLY

Hi Mark – curious If you were and to get some answers on this, I have been suffering with many of the same issues (about 6 months in) – what started as groin pain turned into bladder issues (stabbing, spasms) – then epididymis (urologist tried to say it was cysts which didn’t make sense) – radial left leg pain. Given NSAIDs which didn’t do anything – possible aggravated more GI issues. Then moved into my abdomen/stomach area (many of the same symptoms) – joint pain, upper left back pain, neck stiffness, swollen lymph nodes, very susceptible to other illnesses. I saw the GI who did many of the same procedures (endo, colonoscopy, scopes) – I’ve had the ultrasounds and CT scan (only thing they noticed and brushed off was splenomygly) – always have normal CBC panels, no nutrient deficiencies, all STIs neg, biopsies have come back normal of my GI. I was given the insulting recommendation that my GI issues were psychosomatic. Tried ppis for a few months to no avail. Mayo Clinic seemed promising initially but was ultimately rejected – my hospital group has been unhelpful, one doctor said my ELISA Lyme was positive for two IGM bands (23 and 41) – western blot was unequivocal. Babesia was positive, EBV was also pretty high (although the consensus on all these Lyme type tests always seem to be they aren’t reliable) – my current doctor is trying to treat Lyme with minocycline and rifampin (some marginal improvement but GI issues getting worse) – we haven’ addressed the babesia – although he said the typical atovaquone/azithromycin approach isn’t always effective (reading literature about Lyme and co-infections is like the Wild West – no sides agree on anything, some research says try this / others say try that / they often contradict each other). There is more specific detail to the story but overall it’s largely the same.

I’m curious if you have gotten anywhere – I haven’t been in it as long as you but empathy is strong – I feel like the medical community has outcast me (this seems typical when no one can obviously figure out what is wrong).

REPLY

I have had a lot of the same and constant nausea too! Have had every test known to mankind with no insight as to the problem. Had a motility study of the stomach yesterday and no help either. Yes, my specialists don't talk to one another and I take many pills that don't help. Any additional insight would help. Good luck to you too!

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Mark, Hi, just read this a few months after your posting. As I write this I have been lying in bed all morning. Have no appetite and am extremely fatigued all the time. Aches and pains in joints and lymph nodes etc. Lost about 6 pounds in a month. But I’m much older than you. Have they checked you for c diff? The stools especially are suspicious. After being on all those antibiotics I would definitely get checked for that. It can wreck your body. I was diagnosed after about six months of symptoms.

REPLY
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