01 Oct Chronic Lyme Disease; Part 2
In my last column I wrote about the difficulties often encountered when it comes to diagnosing and treating Chronic Lyme Disease and it’s co-infections. In this column, my goal is to further expand on this topic. With Lyme disease being the FASTEST growing vector-borne disease in North America and Europe, I strongly urge everyone to, at the very least, understand the preventative measures regarding tick exposure. Contrary to popular belief, this is not an isolated disease only pertaining to certain areas in the US. In fact all 50 states have reported cases of Lyme disease, with an astounding 300% increase in reported cases in the northeastern and upper midwestern U.S.
Just to recap on my last column:
- Lyme disease and other tick-borne infections are on the rise and not just in the Midwest or northeastern U.S.
- There is a drastic need for more awareness regarding prevention and early treatment.
- Studies have shown as few as 27% of people with the disease actually remember having the hallmark bullseye rash. (1)
- There continues to be a HUGE gap in the awareness, recognition, and treatment of the population who simply missed the early infection and now have a persistent vector-borne disease.
- Migrating pain and debilitating fatigue tend to be the most common symptoms but may also include neurological symptoms, headaches, insomnia, anxiety, depression, digestive issues, and environmental sensitivities (to name a few).
- Lyme disease has been referred to as the “Great Imitator” and presents like many other health problems including Fibromyalgia, Arthritis, Chronic Fatigue Syndrome, Bells Palsy, ADD, MS, Parkinson’s, autoimmune and psychiatric disorders.
For those who actually witness a bulls-eye rash after being bitten by a tick, there is no further need for testing and one should immediately start antibiotic treatment. A positive blood test and/or the clinical diagnosis made by a practitioner based on symptoms and recent tick exposure are also accepted indicators for treatment. While some researchers believe that Lyme can also be transmitted via blood transfusions, organ transplants, and mother to fetus, as of now, the CDC clearly states “There is no evidence that Lyme disease is transmitted from person-to-person through touching, kissing, or having sex with a person who has Lyme disease.” (2)
The CDC currently recommends the two-step protocol when testing blood for evidence of antibodies against the Lyme disease bacteria. The first-step uses an ELISA (enzyme-linked immunosorbent assay) test. If this first step is negative, no further testing of the specimen is recommended. If the first step is positive or borderline, the second step should be performed. The second step uses a test called an immunoblot (aka “Western blot”) test. Results are considered positive only if both tests are positive. For many reasons, the two-tiered approach fails to be as sensitive and specific which can lead to a high probability of false-negatives (meaning they show no disease when the disease actually exists). (3)
Most practitioners are familiar with this standard Two-Tier Testing method for testing Lyme Disease; however, even in acute cases its reliability is questionable. In the early stages of the disease this testing method has upwards of 74.9% chance of a false negative as it can take 4-6 weeks after infection for the body to produce measurable levels of antibodies. (4)
The most commonly used lab by Lyme literate doctors, who are familiar with persistent vector-borne diseases, is IGeneX Laboratory. IGeneX does not rely on the initial ELISA or IFA screening test only. They perform a Lyme ImmunoBlot assay that is approved for use in the U.S. The test is very sensitive and specific and thus yields more “true” positive results. This lab offers slightly different criteria regarding a positive test and tests for U.S. and European species of Lyme Borrelia, whereas the standard Two-Tier protocol tests for only one species.
As I mentioned in my previous column, if you suspect you may have a late or chronic Lyme infection, I recommend first taking the Horowitz Lyme-MSIDS Questionnaire before pursuing further testing: http://www.lymeactionnetwork.org/wp-content/uploads/2015/06/MSIDS.pdf
Find a Lyme Literate Doctor
If Lyme is suspected upon completing the above questionnaire, it is important to next find a Lyme literate doctor to perform the appropriate work-up and lab testing. For those with a new/early infection, seeking treatment as soon as possible is urgent for the best outcome. As lab testing is not the gold-standard means of uncovering a persistent infection, a clinical diagnosis with a Lyme literate doctor is ideal for successful treatment of a vector borne disease.
A simple internet search or referral is typically the easiest way to track down a local practitioner who specializes in Lyme. This may be a Naturopath, Chiropractor, Nurse Practitioner, or Medical Doctor. In many cases, those who specialize in this area have a personal experience with this disease, thus oftentimes resulting in a strong passion for helping others in this area.
In addition, larger specialty clinics can be found around the US including: Sponaugle Wellness Institute, near Clearwater Florida, Envita Natural Medical Center, Scottsdale Arizona, and Hudson Valley Healing Arts Center, Hyde Park New York to name a few.
It’s More than Just Lyme
Dr. Richard Horowitz, a Lyme Disease specialist and author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” and “How Can I Get Better?” has developed what he calls the Multiple Systemic Infections Diseases Syndrome (MSIDS) 16 Point Model in which he believes there are up to 16 reasons why patients with chronic disease do not get better. His focus with treating a chronic infection is to:
- Treat ALL Potential Infections (bacterial, parasitic, and viral)
- Support Immune Function
- Reduce Inflammation
- Address Environmental toxins
- Support Nutritional & Enzyme Deficiencies
- Enhance Mitochondrial Function
- Balance Hormones
- Address Neurological Dysfunction
- Improve Mental Status
- Improve Sleep
- Support Autonomic Nervous System and POTS
- Address Allergies and Sensitivities
- Improve Gut Microbiome
- Support Liver Function
- Manage Pain
- Promote Exercise and Movement
The Next Steps
As mentioned, the current standard of care for the treatment of Lyme disease appears to be focused primarily around acute cases and early treatment. For those suffering with persistent or latent forms of Lyme, treatment options can be much more complicated. In fact, chronic Lyme can be downright difficult to treat and requires a strong commitment from the patient. Thus it is important to weigh the pros and cons prior to moving forward with aggressive treatment. Factors to consider include:
Complexity of Treatment- A somewhat brief round (2-4 weeks) of antibiotics tend to work well when Lyme is caught early because the disease hasn’t had enough time to develop into it’s more protective or “persistent” forms. When untreated, the tiny spirochete bacteria eventually corkscrew their way into cells, form protective biofilms, and can develop into cysts- thus becoming impervious to the short stint of antibiotics that can be so effective in treating early cases of Lyme.
Cost- Unfortunately, health insurance may not cover more than a few weeks of antibiotic treatment. Treatments can become quite costly and typically require ongoing interventions. Some specialty clinics can cost $25,000-$50,000 and may require patients to stay for 1-2 months.
Duration of Treatment- One should expect several months of treatment before noticeable changes are experienced and sadly, relapses can occur and ongoing care may be necessary.
Feeling Worse Before You Feel Better- As with many diseases, patients often note feeling much worse before they feel better when treating. Much of this is due to the die-off of pathogens being eradicated. Fortunately, a Lyme specialist can often adjust the course of treatment based on tolerance.
Support- Having a positive supportive family and social network is going to be key in the healing process. There may be some issues with missed work and periods of increased stress and frustration and this can be rough on relationships.
While the above factors can be daunting to think about, I felt it necessary to mention these factors to drive home the point that treatment for these persistent vector-borne diseases is rarely easy. Thus, it is important to weigh the pros and cons of aggressive treatment prior to beginning. For those with manageable symptoms, one could simply start with Dr. Horowitz’s 16 Point MSIDS model, working down the list with the factors that one can do on their own to see if symptoms subside.
Of course, for those suffering from symptoms that are debilitating, worsening, or compromising quality of life- I highly recommend seeking a Lyme literate specialist and beginning treatment as soon as possible.
Dr. Janel Payne, a Naturopath in Bend Oregon specializing in Lyme, states that: “Patients need to seek treatment that best resonates with them, and find a practitioner willing to work with them. They need to give any treatment at least 6 months to see appreciable beneficial changes; however, most patients will find relief sooner. Several factors need to be taken into account such as bacterial load, genetics, toxic load, polymicrobes, outside support system, and how long they’ve been sick.”
Prevention is Key
Obviously, the best way to beat Lyme and other vector-borne diseases is to focus more on prevention. Some simple tips found on the CDC’s website include:
- Treating clothing and gear with products containing .5% permethrin as well as using insect repellents when outside (make sure they are registered with the Environmental Protection Agency). (6)
- Always closely inspect gear, pets, family members and yourself for ticks. To be on the safe side, jump in the shower and throw clothing in the dryer for 10 minutes (if they need washed use hot water rather than cold/warm to rinse off potential ticks lingering on the body or clothing before they can become attached. (6)
- If a tick is found on the body, remove it as soon as possible using a pair of fine-tipped tweezers to gently remove the tick and clean the area (the CDC’s website provides clear steps on this process). (6)
While Lyme can be a scary and frustrating disease for those already infected, the good news is the rest of us can practice simple steps when outdoors to drastically reduce our risk of exposure. With the summer months now upon us, I highly recommend visiting the CDC’s website for more information on preventing and managing tick exposure. (5)
- Bingham PM, Galetta SL, Athreya B, Sladyky J, Neurologic manifestations in children with Lyme disease, Pediatrics, 1995 Dec; 96(6): 1053-6