Symptoms and Organ Involvement in DILS

Diffuse Infiltrative Lymphocytosis Syndrome (DILS) is more than just a blood condition; it is a multisystem syndrome where specific immune cells (CD8+ T-cells) migrate into various parts of your body ^[1][2].

While most people first notice swelling in their face or neck, DILS can also affect internal organs like the lungs, kidneys, and nerves ^[1][3]. Understanding which symptoms are common glandular issues and which ones are “warning signs” is essential for managing your health.

The “Classic” Glandular Symptoms

For many, the first sign of DILS is a cluster of symptoms that look very much like an autoimmune disease called Sjögren syndrome ^[1]. Doctors often refer to this as sicca syndrome, a medical term for extreme dryness ^[3].

• Painless Swelling: You may notice large, firm, but usually painless lumps in front of your ears or along your jawline. This is the swelling of the parotid glands (the largest salivary glands) ^[1][4]. In DILS, this swelling is typically bilateral, meaning it happens on both sides of the face at the same time ^[1].
• Dry Mouth and Eyes: Because the CD8+ cells crowd into the glands that produce spit and tears, you may experience a severe lack of moisture ^[1][3]. This can make it hard to swallow dry food or make your eyes feel like they have sand in them.
• Persistent Swollen Lymph Nodes: You may feel multiple “pea-sized” or larger bumps in your neck, armpits, or groin that stay swollen for a long time ^[1].

Extraglandular Involvement: When Organs are Affected

When the immune cells move beyond the salivary glands into your internal organs, it is called extraglandular involvement ^[1][3]. These symptoms are relatively uncommon and require close medical attention, as they have broad alternative causes in people with HIV.

The Lungs (LIP)

When CD8+ cells infiltrate the lungs, it can cause a condition called Lymphocytic Interstitial Pneumonia (LIP) ^[1]. This is an interstitial inflammatory process of the lung tissue ^[5].

• Watch for: A dry, hacking cough that doesn’t produce mucus, or feeling short of breath during activities that used to be easy (like walking up stairs) ^[6][7].
• Important note: Cough or shortness of breath in a person with HIV can reflect opportunistic infection, tuberculosis, pulmonary hypertension, medication effects, or malignancy. LIP is one possible diagnosis requiring clinical assessment, imaging, and sometimes pulmonary testing.

The Nervous System

DILS can affect how your nerves send signals to your brain or muscles ^[1].

• Facial Nerve Palsy: This is a sudden weakness or “droop” on one side of your face, similar to Bell’s palsy. It can make it hard to close one eye or smile evenly ^[1][8].
• Neuropathy: You may feel numbness, tingling, or a “burning” sensation in your hands and feet ^[9][10]. In some cases, it can cause weakness or an unsteady gait ^[9].
• Important note: HIV-related neuropathy, antiretroviral toxicity, diabetes, infections, medications, stroke, and other issues must also be considered for these symptoms.

The Kidneys

Though rare, DILS can cause inflammation in the kidneys known as tubulointerstitial nephritis ^[2][8].

• Watch for: Changes in your urine (such as blood or foaminess), new swelling in your ankles or legs, or a sudden increase in blood pressure ^[2][8]. Often, kidney issues don’t have obvious symptoms early on and are only caught through blood tests that show a rise in creatinine (a waste product filtered by the kidneys) ^[2]. Unrelated kidney disease must also be considered.

When to Seek Emergency Care

Most DILS symptoms develop slowly over weeks or months. However, you should call emergency services or go to an emergency department immediately if you experience “red flag” symptoms that suggest life-threatening conditions:

1. Sudden facial droop, limb weakness, severe headache, or confusion: These can be signs of a stroke or another emergency, not merely nerve involvement from DILS ^[11].
2. Difficulty breathing or a severe drop in your ability to exercise ^[6].
3. Decreased urine output or rapid swelling in the legs ^[2].
4. Urgent eye pain, light sensitivity, or vision loss: These are warning signs of serious dry-eye complications.

If you notice any of these, don’t wait for your next scheduled appointment. Call 911 or proceed to an emergency department.