Patients who are sick shouldn’t have to fight to be believed. With any illness, the sooner you can get properly diagnosed, the better your chances of full recovery.

Because standard tests for many infectious diseases can be falsely negative, and the symptoms are often just “flu-like,” it can be nearly impossible to receive an early diagnosis and early treatment.

On Oct 11, the CDC/HHS-funded “Infection-Associated Chronic Conditions – Understanding and Engagement” (ICUE) project held its final meeting as a public webinar.

During the event, panelist Lucia Santos reminded us that while the term IACC (Infection-Associated Chronic Conditions) may be new, the history of infections causing chronic conditions is not new. For example, post-polio syndrome and AIDS are examples of the far-reaching effects a virus can have.

As an ICUE presenter, LymeDisease.org’s Lorraine Johnson explained how people living with chronic Lyme disease often face huge hurdles while trying to receive a proper diagnosis and care.

The broad misunderstanding and stigma associated with tick-borne diseases can make it more difficult for patients to receive the necessary support in work, school, and health settings. It’s not uncommon for these patients to be subject to gaslighting by their standard physician, requiring them to travel great distances to find a clinician who will help improve their quality of life.

Patients with IACCs suffer from invisible disabilities and all the challenges that go along with them.

A recent study from Johns Hopkins University School of Medicine documents the difficulty the majority of patients with Lyme face while seeking care: “Before their initial diagnosis of Lyme disease, approximately half (51.3%) had first been told that their symptoms represented another illness or condition.”

My family’s experience

In 2013, the team at a prestigious medical center believed my daughter was sick but they didn’t know why. She was given a diagnosis of myalgic encephalomyelitis (ME). This was based on the fact that she had muscle pain “myalgia,” measurable inflammation of the brain and spinal cord “encephalomyelitis,” and an impaired immune system.

The term ME highlights neurological and immunological symptoms in addition to fatigue, cognitive impairment, post-exertional malaise, dysautonomia, and widespread pain—all symptoms that can be triggered by Lyme and/or other infections.

Unfortunately, the team didn’t find the root cause because her standard test for Lyme was negative and they accepted that as the final word. Thus, like so many others, we were left to continue seeking answers outside of mainstream medicine.

The symptoms experienced by those living with an IACC are real. Unfortunately, most symptoms are subjective and difficult to describe accurately. Because of this, patients may not be taken seriously by their physician. Patients with these symptoms also suffer the stigma of invisible illnesses and are often misdiagnosed with a mental disorder.

In my opinion, if a patient has sudden onset of multiple symptoms, the last thing a physician should be diagnosing them with is a “functional” or “somatic” mental disorder. Instead, they should consider all infectious agents based on possible exposure(s). Whether it’s a tick- or mosquito-borne disease, parasitic, bacterial or viral illness—the key is to find the trigger(s) and treat them until the symptoms resolve.

What it takes to get properly diagnosed

To get a proper diagnosis you will need to find a kind, caring, compassionate clinician who has the time to listen to and work with you on finding treatment that helps.

To aid in your diagnosis, I recommend keeping a diary or tracking your symptoms on a calendar or app on your phone. It’s important to relay how and when the symptoms began. For example, symptoms that began two weeks after a camping trip, or if you had COVID and never got better.

Make a list of your symptoms and rate each of them from least to worst on a pain scale of 0-10. During your medical appointment you will want to make sure the clinician is aware of most of your symptoms, but if time is short have a list of your five worst symptoms to focus on.

The majority of patients with IACCs have multi-systemic involvement. They will likely have pain, weakness, fatigue, sleep disturbance, dysautonomia, small fiber neuropathy, and overactive mast cells.

Symptoms to document

Fever

• Any temperature above your normal baseline.
• Low grade fever that has a pattern: evenings, mornings, or weekly
• Night sweats, chills, flushing

Pain

• Headache
• Joint pain/swelling, one joint or can migrate from one to another
• Muscle pain, burning, tingling, stabbing, stiffness
• Bone pain
• Deep, internal organ or abdominal pain

Heart

• Chest pain
• Racing/pounding heart
• Skipped beats
• Feeling dizzy or lightheaded when standing
• Be sure to document patterns or if anything specific triggers the heart.

Sleep disturbance

• Change in sleep pattern
• Poor quality, unrestful sleep

Cognitive impairment

• Inability to focus/concentrate
• Decreased ability to perform normal work/school tasks
• Forgetting simple things, names, places, directions

Fatigue

• A prolonged feeling of tiredness, weariness, or lack of energy
• Fatigue can be physical, mental, emotional and/or cognitive

Exercise intolerance

• Inability to engage in any form of exercise
• Exercise that causes worsening of symptoms

Sensitivities

• Increased sensitivities to food, chemicals, medications, etc
• Intolerance to pressure changes (weather & elevation changes)

Post-exertional symptom exacerbation (PESE)

• Severe worsening of symptoms “flairs” as a result of exertion
• Exertion can be physical, mental, emotional or cognitive

Tolerance to activities

Documenting your tolerance to activities is also important. Be sure to speak with your clinician if these activities make you feel worse:

• Tolerance to activities of daily living (ADLs) including brushing teeth, bathing/showering, dressing, using the toilet, getting in/out of bed or chair, walking, and eating. (Note if symptoms are mild, moderate, or extremely worse after ADLs)
• Tolerance to instrumental activities of daily living (IADLS) including using the telephone, shopping, preparing meals, housekeeping, using transportation, taking medication(s), and managing finances.

Communicating your symptoms in a way that your doctor understands should help them understand the severity of your illness. And hopefully, believing in and understanding your symptoms will help your physician differentiate and begin the proper care.

Nothing about treating patients with chronic illness is easy. When someone has been ill for any length of time, it will never be a one-size-fits-all “cookie cutter” approach. Anyone who says differently is flat-out wrong.

The key is to keep an open mind, have options available, never stop looking for the root cause of your symptoms and never give up hope.

LymeSci is written by Lonnie Marcum, a physical therapist and mother of a daughter with Lyme. She served two terms on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org.

Resources

Lyme Symptoms Checklist

Lyme Disease Physician Referral

Resources to help figure out your next move

12 ways you can help yourself manage chronic pain

LYMETIMES: MAST CELL ACTIVATION SYNDROME. When the immune system goes haywire.

Reference

Rebman, A.W., Yang, T. & Aucott, J.N. Invalidation by medical professionals in post-treatment Lyme disease. Sci Rep 14, 19406 (2024). https://doi.org/10.1038/s41598-024-70556-7