Chronic Illness Without a Diagnosis
Little on earth is more frustrating — and fear inducing — than experiencing a group of painful symptoms and then being told that doctors can’t seem to be able to pin down a syndrome or find a diagnosis for what ails you.
They assure you that once the cause of a syndrome has been identified, treatment can begin and an end can be put to your suffering.
Here at Restoration Healthcare, we don’t just start out by ordering a flurry of tests and handing you a book of med scripts to take to the pharmacy. Instead, we dig deep into your medical history, sitting down with you and taking our time and asking pertinent questions about your condition.
Then we conduct a physical exam, followed by comprehensive lab tests to help us determine the cause of your symptoms. It is only at this point that we begin a treatment program based on the diagnosis that targets your problem.
Among the mystery syndromes that are often difficult to diagnose are those caused by ticks, including Lyme disease, Bartonellosis and Babesiosis.
And because such tick-borne diseases are difficult to diagnose, we asked our medical director, Dr. Sunny Raleigh, DO, to answer a few questions about this disease in order to give you a sense for how we approach the discovery and treatment for Lyme disease and other chronic illnesses without a simple diagnoses here at Restoration Healthcare.
Q&A About Lyme disease
With Dr. Sunny Raleigh, DO
Medical Director, Restoration Healthcare
What is Lyme disease?
Dr. Raleigh: Lyme disease is the most commonly reported vector-borne disease in the United States. It is transmitted to humans by the bite of an infected Ixodes scapularis tick — commonly known as a deer tick. Lyme disease is caused by the bacterial spirochete Borrelia burgdorferi.
If diagnosed in its early stage, Lyme disease can be easily treated with antibiotics. But, delayed diagnoses can make treatment and recovery more difficult.
The Centers for Disease Control and Prevention (CDC) estimate that at least 300,000 people in the United States are infected with Lyme disease each year. That figure is 10 times higher than what had been previously reported by the CDC. Experts in the field believe the actual number is even higher.
People usually get Lyme disease from ticks infected with Lyme spirochetes. The nymphal, or immature, form of the tick causes most human cases. Nymphs are about the size of a poppy seed. Because their bite is painless, many people do not realize they have been bitten.
We live in Southern California, not in the “Lyme belt.” So why should we worry about Lyme disease?
Dr. Raleigh: Lyme disease has been found on every continent except Antarctica. It is found all across the United States, with a particularly high incidence in the East, Midwest, and West Coast (Northern California specifically). However, a patient’s place of residence doesn’t accurately reflect his or her Lyme disease risk because people travel, pets and ticks travel, and people move.
Not all ticks are infected. Within endemic areas, there is considerable variation locally, depending on type of habitat, presence of wildlife, and other factors. In addition to the variation that occurs in nature, there is also variation in how aggressively the states have tested ticks for infection. As a result, many times the reported incidence of infected ticks is a reflection that the state has done little or no testing of ticks in the area.
What sort of treatments is available for Lyme disease?
Dr. Raleigh: The medical community has yet to concur on the best means of treatment for Lyme disease. They are divided into two camps, including the Infectious Disease Society of America (IDSA) that recommends two weeks of antibiotics for early Lyme and doesn’t recognize chronic Lyme. The other camp, promoted by the International Lyme and Associated Diseases Society (ILADS), recommends individualized treatment, based on patient response to treatment.
We here at Restoration Healthcare believe there’s no “one size fits all” treatment protocol when it comes to a complex illness like Lyme disease and/or co-infections. It is critical for physicians treating Lyme disease to invest time with their patients. It is vital to take a thorough medical history and to have close follow up to monitor symptoms and treatment response.
The diagnosis of Lyme disease is often made using the criteria set forth in the Center for Disease Control (CDC) surveillance case definition of Lyme disease, including a two-step laboratory testing approach that entails an antibody screen followed by a confirmatory Western blot.
These tests are known to miss 20 to 50 percent of patients who have Lyme disease. As the CDC says, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease.
It’s important to note that currently there are no blood tests that can tell a doctor that you do or do not have Lyme. In fact, such tests can only tell if have been exposed to Borrelia. The clinical picture — backed up by blood tests — is the only accurate measure of active Lyme disease.
Note: A negative blood test does not mean you do not have Lyme disease. It could just mean your immune system is not producing antibodies to Borrelia.
When I (Dr. Raleigh) first had experience with treating these infections, I treated with the full court press antibiotic protocols: high dose cell membrane agents with one or more intracellular agents. I saw dramatic improvements in many patients, but I was still looking for additional modalities.
As I delved deeper into my studies, I began seeing patients respond more profoundly with a synergistic approach of functional medicine, cranial osteopathy, antibiotics, IV nutrients, and herbal remedies. Treating Lyme disease in its advanced stages can be complex. It is vital to take into account numerous factors, including the complexity of the organism, differences in the patients’ immune system, the duration of infection, and the presence of co-infections.
Why is it so important to catch and treat Lyme disease sooner rather than later?
Dr. Raleigh: Lyme disease is called “The Great Imitator” because its symptoms mimic many other diseases. The onset of Lyme disease symptoms can be easily overlooked or mistaken for other illnesses. Once symptoms are more evident, the disease may have already entered the central nervous system and could be difficult to cure.
In one study we’re aware of, a series of individuals were ill for nearly 15 years before they were correctly diagnosed with Lyme disease. These patients suffered greatly. Their symptoms included headaches, poor memory and concentration, fatigue, and sleep disturbance, irritability, lightheadedness, joint pain, chest pain, paresthesias and fibromyalgia.
When initially infected, patients may experience flu-like symptoms that simply do not resolve themselves. They may experience swollen lymph nodes, chills, fever, headaches, fatigue, and muscle and joint pain. These symptoms can take just days — or sometimes months and even years — to appear. Suffice to say, Lyme bacteria are very adept at being detected in the immune system and that’s because they can remain dormant for very long periods of time.
What kind of experience does Restoration Healthcare have with Lyme disease?
Dr. Raleigh: Over the past six years, my knowledge of Lyme and the tick-borne illnesses has undergone a steep learning curve. I have had wonderful mentors to guide my learning. The most significant teachers have been my patients. As I join them on their journey towards wellness, I learn from each interaction.
When I myself developed an enormous bull’s eye lesion while living in Saco, Maine, I literally did not believe I had contracted Lyme disease. And Anaplasma. And Bartonella. I now know what a patient tells herself when the neck aches, the fatigue is overwhelming, and the head is pounding.
I justified my symptoms for more than 10 days by persuading myself it was a spider bite. I work full time and raise three boys. I should sleep more. Perhaps I need to be more diligent with exercising. Did I accidently consume gluten? All these justifications went through my head. And now that four of five family members have Lyme disease, I truly understand how this disease affects lives.
To learn more about Dr. Raleigh’s services for people impacted by chronic illness without a diagnosis — including Lyme disease — please call our office Monday through Friday between the hours of 9am-6pm PT: (949) 535-2322, or connect with us using our online Contact Form.