Recently, I had the honor to interview Ruth Kriz, a Lyme literate, 30-year nurse practitioner in Washington, D.C. and a fellow Lyme disease survivor, to discuss the diagnosis and treatment of tick-borne infections, testing, biofilms, and more. In part one of this two-part series, Ruth reveals how she began treating Lyme, the limitations of testing, and communication strategies between patients and clinicians.
Ruth has an education background and has taught nursing to LPNs through graduate-level nurse practitioners. In her years as an educator, she’s observed the medical community is often undereducated in their knowledge regarding Lyme disease and tick-borne infections; many healthcare providers believe Lyme disease is an acute infection and are misinformed regarding the chronic, persistent nature of this illness. Ruth has chosen to speak publicly about her expertise with Lyme disease and tick-borne diseases in the hopes of helping patients receive a proper diagnosis, along with widening the medical community's understanding of these illnesses.
Below is my interview with Ruth Kriz:
Jenny Buttaccio (JB): How did you get started treating Lyme patients?
Ruth Kriz (RK): I guess you could say it was through the back door. I had interstitial cystitis for 11 years, and I started doing more precise diagnostics with broth cultures because the traditional cultures were coming up negative. One of my patients told me that she had been diagnosed with Lyme disease. When she treated Lyme, her interstitial cystitis went away. So, that started me looking into the connection between tick-borne infections and its connection with interstitial cystitis. Since then, I’ve treated over 2,500 patients. In 98 percent of them, I’ve been able to document tick-borne infections.
JB: In your view, why are so many patients having a hard time getting diagnosed with Lyme disease?
RK: According to CDC, the way you diagnose Lyme is through an antibody test. An antibody test is not testing for Lyme itself; it’s testing for the body’s immune system response to Lyme. When you first get infected, your IGM (immunoglobulin M) is the early responder. It goes up in four to six weeks. Therefore, doing a test for Lyme when you first see a bull’s-eye rash, find a tick, or think you’ve been infected is really inaccurate because it’s going to take several weeks for those antibodies to go up. The IGM stays up for four to six months. As it’s coming down, the IGG goes up. The IGG can stay up for a year, sometime two years. Then, it starts to go down as well. Using a test that only looks at immunoglobulin IGG and IGM is going to miss a lot of people who were either tested too early or too late. So, the race has been on to try to find a better way–better markers–of diagnosing the Lyme.
Currently, there’s a test that looks at inflammatory cytokines, called ISpot Lyme. When Lyme is active, cytokines are high, and therefore, reactive. The technology has actually been out there for decades, and using it to check for Lyme is simply a new application. That’s the one I traditionally use. Also, there are tests that to do DNA testing on urine, blood, or cerebrospinal fluid. In regards to cerebrospinal fluid testing, the literature from 15 years ago says less than 3 percent of people with neurological Lyme test positive with a spinal tap, so that’s not helpful. There are some better antibody tests like IGeneX as well, where you’re more likely to get a positive western blot. But, to answer your question, there are really no good diagnostic tests for Lyme if you’re not in that window to get a good antibody response. The best we can do right now is to look at other markers that respond in the body when Lyme is active.
JB: I’ve heard other doctors suggest that Lyme disease is a diagnosis based on clinical presentation and supporting tests can be useful to help confirm the disease. Do you also hold this belief? As a follow-up question, why are so few clinicians willing to treat Lyme?
RK: That’s what we’re left with if we don’t have a reliable test. Because of the political climate surrounding Lyme, some clinicians feel if they don’t have any documentation in a patient’s chart to prove they have Lyme, they’re going to come under fire from their state medical boards. So, yes. It does need to be a clinical diagnosis. But sometimes practitioners are put in a corner. And to step out on that limb, they might risk their license.
Regarding the second part of the question, the medical education system is geared toward acute infections. Overcoming the infections that were public health threats (like smallpox, anthrax, diphtheria, and polio) and had high morbidity and mortality rates, naturally became the focus of research. Even though 70 percent of the patient population a family practice physician sees deals with chronic illness, the medical community insists on acute care. So the mindset of the doctor is you come up with an ICD-10 code. You have your particular protocol. This is the medicine you give. Then, the patient leaves the office. There’s a whole different understanding as to how you treat acute infections, and how you treat chronic infections.
JB: Are there ways Lyme patients could better communicate their needs to clinicians?
RK: Often, doctors feel like their job is first to rule out the big, nasty stuff going on. After that, they’re not willing or able to tackle the intensive, patient-care demands of a chronically, sick Lyme patient. From my perspective, I think Lyme patients could interface more effectively with the medical community if they could write down the points they want to talk about during their appointment. Also, they can be sensitive to the fact that the practitioner has a schedule and 10 or 20 people after them on that schedule. It’s hard for practitioners to deal with a large Lyme population because their needs are extensive. Not every practitioner is emotionally or knowledge-base equipped to handle the complexity of patients with Lyme. I love what I do. I’ve had Lyme myself. But I also see things from the other side. There’s a lot of skill involved in managing complex patients, and not everybody feels competent enough, or is interested enough, or can financially even afford to provide that level of care.
A Lyme patient must become informed, be educated and be their own advocate. They need to find a practitioner they feel is hearing them.
To find a Lyme literal medical professional in your area, fill out the Doctor Search page on the ILADS website, visit the state support group page on LymeDisease.org, or check Facebook for online forums in your area. Many support group moderators and facilitators will be able to provide you with a list of doctors in your region.
Jenny Lelwica Buttaccio, OTR/L, is an Occupational Therapist and certified Pilates instructor whose life was transformed by Lyme Disease, Chronic Fatigue Syndrome and Interstitial Cystitis. She is creator of the DVD, New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health and wellness advocate and blogger who writes about her journey on [lymeroad.com] as she continues to pursue her personal healing with the support of her husband and two senior beagles. You can find her on Instagram: [jenny_buttaccio] or Twitter: [lymeroad]