I’m a 40-year-old male, approximately 6’2” and 360 lbs. I’ve been dealing with recurrent episodes of systemic illness for about 3 years and still don’t have a unifying diagnosis.
I’m posting because I’m hoping physicians here might be able to help me understand what categories of disease should still be considered and what type of specialist/workup would make sense.
I understand Reddit cannot diagnose me. I’m mainly looking for ideas on what I should discuss with my doctors.
CURRENT FLARE — DAY BY DAY
I have never actually documented a flare while it was happening before. This is the first time I’ve been tracking one in real time.
8/14/26 — Day 1
Severe fatigue
Sleeping 12–14+ hours at a time, which is extremely unusual for me
Bad headache
Sinus problems
Significant mood change
Malaise began and has persisted
8/15/26 — Day 2
Began waking during the night with blurred vision in one eye
At one point I could not see well out of that eye and noticed an oval-shaped area affecting my vision
Severe large-joint pain involving knees, elbows and hips
Joint pain approximately 6/10
Recurrent painful/infected area around my belly button began
8/16/26 — Day 3
Severe dryness of sinuses, eyes and mouth
Low-grade fever
Sweating returned
Strong-smelling night sweats — this odor has occurred repeatedly during previous flares
Significant neck pain
Continued large-joint pain
Chest tightness and asthma symptoms worsened
Belly-button infection became more painful
Severe difficulty sleeping because sweating wakes me and then pain/restlessness prevents me from getting back to sleep
8/17/26 — Day 4
Only a few hours of fragmented sleep
Heavy sweating during sleep, enough to completely drench my pillow
Significant large-joint pain
Pain/burning sensation in my legs
Painful lumps under my arms
Severe sinus symptoms
Persistent malaise
Profound exhaustion and no energy — I was too drained to make dinner
Belly-button infection continuing to worsen
Feeling depressed and completely exhausted
RECURRING SLEEP PATTERN
This is one of the most consistent parts of my flares.
Early in a flare, I can suddenly sleep 12+ hours, which is very unlike my normal sleep.
As the flare progresses, it completely reverses:
Heavy sweating wakes me repeatedly
Pain and restlessness prevent me from going back to sleep
Sleep becomes extremely fragmented
During severe flares I have gone 24+ hours without sleeping
This pattern has happened repeatedly, not just during this episode.
RECURRING INFECTION PATTERN
I’ve had approximately 6–7 episodes of significant belly-button infection during these systemic flares.
I don’t believe the belly-button infection itself is the primary illness. I’m very hairy and believe the umbilicus may simply be an area where I’m particularly susceptible when I’m severely run down.
During these episodes I also commonly develop:
Severe sinus problems/infections
Dental/tooth infections
During one particularly severe previous episode I had:
A tooth infection
A severe belly-button infection that became almost tumor-like
My first-ever episode of genital sores/HPV reactivation
Pneumonia afterward
At the time, my physician felt my immune system was severely depleted/exhausted and that this contributed to my susceptibility to infections.
OTHER RECURRING SYSTEMIC SYMPTOMS
Depending on the flare, I can also experience:
Severe joint pain involving multiple joints
Elevated ESR/CRP
Fevers/feeling feverish
Drenching night sweats
Burning skin
Facial/malar-type rash
Severe dry eyes, dry mouth and dry nose/sinuses
Eye inflammation/swelling
Chronic sinus problems
Headaches
Brain fog and memory problems
Tingling/numbness
Weakness
GI symptoms/diarrhea
Exocrine pancreatic insufficiency
Hepatomegaly/splenomegaly
Cough/shortness of breath/chest tightness
Palpitations and racing heart
Painful lumps/masses in the neck/axillary areas
HEART SYMPTOMS
I have a history of SVT and recurrent palpitations.
These are not new symptoms, but illness/stress seems to aggravate them.
Recently I’ve had a combination of palpitations and a “racy” feeling, with heart rates ranging from the high 90s to approximately 120 bpm.
I’m already scheduled for:
Holter monitor
Echocardiogram
Nuclear medicine stress test
PORPHYRIN WORKUP
This has been confusing, so I’m including the actual numbers.
I have been told I have a porphyrin disorder, but I have not been diagnosed with porphyria.
A 24-hour urine porphyrin profile showed elevations including:
Uroporphyrins: 29 µg/24 hr (reference 0–24)
Heptaporphyrin: 7 µg/24 hr (reference 0–4)
Pentaporphyrin: 10 µg/24 hr (reference 0–4)
Coproporphyrin I: 39 µg/24 hr (reference 0–24)
Other porphyrin fractions were within the displayed reference ranges
However, my July 2024 testing showed:
Urine ALA: 13 µmol/L (reference 0–35)
Urine PBG: 1.2 ng/mL (reference 0–2.0)
So I have an abnormal porphyrin profile but normal ALA and PBG on those tests.
I don’t know what significance the porphyrin abnormalities have, and I am not claiming that I have porphyria.
OTHER TESTING / WORKUP
Some things have been investigated:
Sarcoidosis — my doctors have told me this was ruled out
IgG4-related disease — considered but not diagnosed
ANA — repeatedly reported negative
QuantiFERON-TB Gold — negative
H. pylori — negative
Fecal calprotectin — normal
CT neck — no adenopathy
PET/CT — small/normal-sized lymph nodes in multiple areas without significant metabolic activity
I’ve had excisional biopsies of neck and bilateral axillary masses. The pathology showed:
Benign mature fibroadipose tissue
Blood vessels
Nerve bundles
However, no lymph-node tissue was actually obtained, and flow cytometry was limited/nondiagnostic because the samples were hypocellular.
So I don’t believe lymphoma or other disease has been definitively excluded by those biopsies.
OTHER MEDICAL HISTORY
I have:
Exocrine pancreatic insufficiency
Hepatomegaly
History of splenomegaly
Multinodular thyroid with a stable 1.3 cm TR4 left thyroid nodule
Cervical and lumbar degenerative/disc disease
Pathogenic heterozygous CHEK2 variant
I’ve also had persistently/recurrently elevated inflammatory markers over the years, although they aren’t necessarily elevated during every flare.
CURRENT MEDICATIONS
[ADD CURRENT MEDICATIONS AND DOSES HERE]
SMOKING / ALCOHOL
Former smoker — quit approximately 5 years ago.
Former alcohol use — stopped approximately 5 years ago.
WHAT I’M TRYING TO FIGURE OUT
I’m not necessarily looking for someone to name one diagnosis from this post.
I’m trying to understand whether the repeating pattern suggests a particular category of disease that hasn’t been adequately investigated.
The recurring pattern is essentially:
profound fatigue/long sleep → systemic symptoms → joint pain → fever/sweating → dryness/sinus/respiratory symptoms → severe sleep disruption → recurrent infections during the more severe episodes
with additional symptoms involving the eyes, skin, GI system, lymph nodes/masses, neurologic system and cardiovascular system.
Given the combination of recurrent inflammatory flares, multisystem symptoms, recurrent infections during severe episodes, abnormal porphyrin profile, and nondiagnostic biopsies, what would you consider as the most important things to investigate next?
Would this pattern make you think about:
Autoimmune disease
Autoinflammatory disease
Primary/secondary immune dysfunction
Mast-cell or other inflammatory disorders
Metabolic/porphyrin disorders
Something hematologic
Or another systemic condition?
And what type of specialist would be best positioned to put all of this together?
I’m exhausted and honestly pretty frustrated after several years without an answer. I have a large amount of lab work and imaging available if anyone needs specific results to better understand the case.
I use ChatGpt A LOT it has been a life changer for organization, tracking and research with such bad brain fog. I have been tracking a current bad flare. I am going to post it along with things that docs have ruled out or are less likely in their eyes.
4-Day Flare Tracker — Looking for Similar Experiences / Ideas
I’ve been dealing with recurrent systemic flares for several years, and I’ve never actually tracked one day-by-day before. This is the first time I’m doing it while the symptoms are happening.
I’m hoping others with unexplained inflammatory/immune-type illnesses might recognize a pattern or have ideas about what I should ask my doctors.
8/14/26 — Day 1
Severe fatigue — sleeping 12–14+ hours, which is very unusual for me
Bad headache
Sinus problems
Significant mood change
Malaise began and has continued throughout the flare
8/15/26 — Day 2
Started waking during the night with blurred vision in one eye
At one point I could barely see out of that eye and noticed an oval-shaped area affecting my vision
Severe large-joint pain — knees, elbows and hips — around 6/10
Belly-button infection started returning
8/16/26 — Day 3
Severe dryness of sinuses, eyes and mouth
Low-grade fever
Sweating started coming back
Strong-smelling night sweats, which I’ve noticed repeatedly during previous flares
Significant neck pain
Continued large-joint pain
Chest tightness and asthma flare
Belly-button infection became increasingly painful
Couldn’t sleep well; sweating, pain and restlessness repeatedly woke me
8/17/26 — Day 4
Only a few hours of fragmented sleep
Heavy night/day sweating — woke up with my pillow completely drenched and smelling strongly
Significant large-joint pain
Pain and burning sensation in my legs
Painful lumps under my arms
Severe sinus symptoms
Malaise continuing
Profound exhaustion/no energy — I was too drained to make dinner
Belly-button infection continuing to worsen
Feeling depressed and completely wiped out
Another recurring pattern I’ve noticed
This isn’t my first episode. I’ve had approximately 6–7 similar belly-button infections during severe flares.
I don’t believe the belly-button infection itself is the primary disease process. I’m very hairy, so I suspect it’s an area where I’m particularly vulnerable when I’m run down. During these episodes I also commonly develop sinus problems or a tooth infection.
During one particularly severe episode I had:
A tooth infection
A very severe belly-button infection that became almost tumor-like
My first-ever episode of genital sores/HPV flare
Pneumonia afterward
My doctor at the time told me my immune system was severely depleted/exhausted and that this contributed to my susceptibility to infections.
Sleep pattern is also extremely repetitive
At the beginning of these flares I can sleep 12+ hours, which is very unlike me.
As the flare progresses, it flips completely:
Severe night sweating wakes me
Then pain/restlessness keeps me awake
Sleep becomes extremely fragmented
During bad flares I’ve gone 24+ hours without sleeping
Heart symptoms
I’ve also had recurrent palpitations and a “racy” feeling. These aren’t brand-new symptoms—I have a history of SVT and suspect illness/stress may trigger my previous problems.
During this period my heart rate has been roughly high 90s to 120 bpm.
I’m already scheduled for a Holter monitor, echocardiogram and nuclear medicine stress test, so hopefully I’ll get some objective information about what’s happening during these episodes.
I’m not looking for a diagnosis from Reddit. I’m mostly looking for people who have experienced a similar repeating systemic flare pattern, particularly the combination of inflammation/joint pain, fevers/sweating, profound fatigue, dryness, sinus/respiratory problems, recurrent infections and the dramatic sleep reversal.
If anyone recognizes something similar or has suggestions for questions/tests I should bring to my specialists, I’d appreciate it.
Conditions/tests that have been negative or considered ruled out
Sarcoidosis
You have been told by your doctors that sarcoidosis was ruled out.
IgG4-related disease
IgG4-related disease was investigated/considered.
You were told it could not be diagnosed, particularly after the PET scan did not show the expected findings.
Important: a negative/nonspecific PET does not by itself prove that every form of IgG4-related disease is impossible. It is more accurate to say your doctors did not establish the diagnosis.
Tuberculosis
QuantiFERON-TB Gold was negative in September 2024.
ANA / lupus screening
You have repeatedly reported negative ANA testing.
This makes classic ANA-associated autoimmune disease less likely, but a negative ANA does not rule out every autoimmune or inflammatory disease.
Lymphoma / malignancy
PET/CT showed small-to-normal-sized lymph nodes in multiple areas without significant metabolic activity.
This was reassuring, but the radiology report still listed inflammatory/granulomatous disease and some low-grade malignancies in the differential.
Your excisional biopsies of the neck and bilateral axillary masses did not actually contain lymph-node tissue. They showed benign mature fibroadipose tissue, blood vessels and nerve bundles.
Flow cytometry was limited/nondiagnostic because of the low-cellularity samples.
Therefore, I would not describe lymphoma as definitively ruled out based on these results alone.
Important things that remain unresolved
Cause of the recurrent systemic inflammatory flares
Cause of persistently/recurrently elevated inflammatory markers
Recurrent fever/sweating episodes
Severe joint pain/inflammation
Recurrent sinus/respiratory problems
Recurrent infections during severe episodes
Recurrent painful underarm masses/lumps
Eye/visual symptoms during flares
Dry eyes, mouth and sinuses
GI symptoms/exocrine pancreatic insufficiency
Hepatomegaly/splenic enlargement history
Neurologic symptoms/brain fog/tingling
The relationship between the flares and recurrent palpitations/SVT
Whether there is an underlying immune-system problem, inflammatory disease, autoinflammatory condition, or another systemic process
Other relevant negative/reassuring findings
Fecal calprotectin was normal.
H. pylori testing was negative.
PET showed no significantly metabolically active lymphadenopathy.
The 2026 RUQ ultrasound showed no acute cholecystitis or biliary obstruction.
Bottom line
The most accurate way to describe the current situation is:
Several specific diseases/tests have been negative or considered unlikely, but there is still no unifying diagnosis explaining the recurrent systemic flares. Some major possibilities have been investigated without definitive answers, and some previous biopsies were nondiagnostic because actual lymph-node tissue was not obtained.
I have been very ill for years now. Negative ANA. It started when I was working in a rock pit running equipment I became very ill one day and left to the doctor. There they found multiple inflammation markers, rash, exocrine pancreatic insufficiency, inflamed pancreas, inflamed spleen, enlarged liver and I was in a lot of joint and bone pain. It’s been a long journey since, I have lost my career, my identity, I no longer feel like a man, husband or father but I feel as though I am just existing. I have had several PET scans showing granulomas and lymph nodes, I have pictures of lymph nodes in my neck and underarms, behind my ears and the ones under my arm pits have gotten like base balls a lot. I also bet random infections all over especially teeth, belly button and sinuses. I also was found to have pneumococcal antibodies that are basically non existent but they gave me a pneumovax booster to increase them. I literally feel like I’m dying at this point. It’s gotten so bad. I have severe flares but anymore am sick all the time. I will out some test in comments.