In 1969, author Elizabeth Kübler-Ross published her book On Death & Dying. In it she presented a now-famous formulation of the stages of grief that all dying people tend to experience as they come to terms with their imminent passing. Since the book’s publishing, her stages-of-grief system has become more popular than her book was, and it is now a part of our modern cultural awareness. The five stages she outlined include denial, anger, bargaining, depression and acceptance.

It seems that patients with chronic Lyme seem to exhibit similar but different stages of consciousness, experiences and emotions as they move to complete healing. One of the differences in the staging system is that with Lyme, it is possible for a patient to get stuck in a stage and never progress to complete healing. Conversely, in the stages of grief outlined by Kübler-Ross, a patient ultimately moves through the system and reaches the final conclusion of death whether they like it or not.

No staging system can be entirely comprehensive and each patient with Lyme may experience these stages in a different order than presented here. That said, based on work with many  patients, this system seems to adequately describe the typical steps a chronic Lyme patient goes through on their road to complete recovery.

1.  Discovery

Patients can get stuck in this stage for months, years and even decades. They know something is wrong with them, but they don’t know exactly what. They go from doctor to doctor and take test after test and still don’t reach an adequate explanation for the wide range of symptoms they’re experiencing. Or worse, misdiagnosis may send them down a treatment rabbit hole with no end solution. When a definitive diagnosis does come through, the patient feels an overwhelming sense of relief that they can now focus on this illness with a treatment that will ultimately bring them to complete recovery. For the chronic Lyme patient, this relief is often short-lived as they begin to experience the challenges of the Treatment phase.

2.  Disillusionment

This stage may come during the Discovery stage or during the Treatment stage. Either way, a chronic Lyme patient will begin to have some of their beliefs about their trusted medical systems, insurance coverage and Western medical doctors’ knowledge overturned. As the chronic Lyme patient begins to experience inconclusive or incorrect diagnoses and treatment protocols that are dangerous and ineffective in curing them, they lose faith in the system that supported them in the past. They find that insurance companies don’t cover alternative treatments at all and barely cover pharmaceutical treatments that often don’t help. Many of their doctors have not been trained in chronic Lyme treatment, so these physicians may become defensive and question whether their patients are sick with a legitimate disease. Family members may begin to believe that the chronic Lyme patient’s illness is all in their head and that the patient is either seeking attention or suffering from depression or mental illness. At this point, the patient who can move from disillusionment through a belief-system shift of self-empowerment (by becoming their own health advocate or even their own physician) is the patient who can move to the next stage.

3.  Treatment

Treatment of chronic Lyme is not a one-size-fits-all proposition. Physicians and patients are finding that the treatment combinations that work effectively are customized to the patient and their particular set of symptoms and co-infections. It is important that a patient goes through the Disillusionment phase by realizing that the diagnosis/treatment/cure scenario they experienced in the past with other illness will not be the same straight line with chronic Lyme.

Further confusing is the fact that because antibiotics are prescribed and proven effective in treating early-onset Lyme, many physicians prescribe antibiotics-only treatments to their chronic Lyme patients and the patients don’t improve. These patients may experience some early symptom relief, but many cannot tolerate antibiotics alone or find that they need to continue treatment when their symptoms return weeks, months or years later. Most physicians agree that antibiotics-only treatment is not a cure for chronic Lyme disease. The more educated ones know that all-natural and herbal remedies can remove the pathogens with a combination of detoxifiers to eliminate toxins from the system. At this point, it can be an important move for a patient to do their own research and find the treatment combinations that work for them. 

4.  Anger & Panic

For those stuck in the Disillusionment and/or Treatment stages, overwhelming frustration with lack of healing improvement can bring up combinations of anger, rage and panic. Depending on the patient, they react either externally or internally, and this can then inform whether the patient experiences anger or panic. Patients who react externally are more prone to anger and tend to get frustrated with their family members, doctors and support systems. They flare into rages that alienate them from the very people trying to help them. Further, they can feel unheard or marginalized when they complain of symptoms and don’t receive validation from others. Because these patients tend to suffer from central nervous system irritation brought on by Bartonella and other co-infections, the term “Bartonella Rage” has become well-known in Lyme communities.

If a patient reacts internally, they may be prone to fits of panic. It is common for Lyme patients to run out of money and support during the Treatment stage, and these stressors can result in the patient feeling hopeless. When the bottom falls out of a patient’s world like this and they have no energy to continue fighting the illness, suicidal thoughts may occur. It is an unfortunate fact that in the U.S. suicide continues to be the leading cause of death in patients with Lyme.

For these reasons, it is important for patients to move beyond this stage. Furthermore, the anger and panic they experience actually worsens symptoms and helps the bacteria and co-infections thrive. Those who have come to terms with their anger and panic find they have more energy reserves to heal. They place their focus on moving on with their lives vs. feeling the need to prove the injustices they have experienced. To be sure, they have suffered real injustices, but it is exhausting and energy draining to spend your time proving yourself to an unsympathetic audience. Placing focus on happier thoughts, successes and positive pursuits has always proven to be a powerful component in healing, and it is the key to helping patients move on from this stage.

5.  Acceptance

A patient who has accepted his/her situation is one who is ripe for healing. It doesn’t mean they have resigned themselves to failure or illness. It means they have stopped resisting, and by doing so have stopped the energy cycle of opposing force from the disease. Many alternative healers will tell you the less energy and attention you give to an illness, the less resistance you will get back from it. Another way to let go of resistance during this stage is to stop identifying with the illness; stop calling it “my disease” or “my symptoms”. Stop saying, “I have Lyme” and refer to it in the past: “I had Lyme.” Once negative focus on the illness has dwindled, patients tend to be able to move to the next stage.

6.  Gratitude

If the idea of being grateful for chronic Lyme disease sounds ridiculous or unthinkable, you may not be ready for this stage. Those who have reached recovery openly accept this concept. In fact, it allows them to put the illness completely behind them and understand why it was introduced in their life in the first place. It helps to think of the disease simply as new information being introduced into one’s life. The illness is a doorway or fork in the road that can either take you upward or downward. Instead of reacting negatively, you can accept it gracefully and realize what a gift of experience you have been given. This experience can be like a forest fire that burns away all unnecessary elements in your life, while creating space for new growth. Yes, it burns things you deem valuable, but after those things are gone, you may realize they weren’t as important as you thought.

Further, you are forced into new situations and places in your life that can be better than where you were before. You come to a point that whenever a symptom occurs, you lovingly embrace it, thank it for the information, and then ask for it to go with love. After doing this, each symptom passes quickly. The patients who move through this stage always experience some sort of spiritual shift, and this shift usually results in them wanting to help others with the disease. These people are also positive, open-minded, full of gratitude and free of regrets. They are emotionally “debt-free” and actively give thanks for the illness and the knowledge and experience it has given them.

Gregg Kirk is a Lyme disease advocate, a former patient, and the current practitioner who runs the Lyme Recovery Clinic in Darien, CT, the Ticked Off Foundation nonprofit patient fund, and the Ticked Off Music Fest benefit concert series. Connect at 203-858-9725 or LymeKnowledge.com. See listing, page 26.