Lyme disease is a growing epidemic in our country and worldwide. The CDC reports 300,000 new cases a year, making it the fastest growing vector borne infectious disease in the United States. Those are only the reported cases. There are many more undiagnosed patients out there, struggling to understand what is happening to them. These patients get caught in a web of misconceptions. The misconception that Lyme is easy to diagnose. The misconception that Lyme is easily treated and overcome. Finally the misconception that insurance will cover your treatment. There are a growing number of people who find they don’t fit into either of these categories, yet they are still suffering from Lyme.
We find ourselves in the hands of doctors who do not fully understand the broad spectrum of Lyme, its symptoms or how to accurately treat the disease. Within a medical community who does not believe Lyme disease exists in a chronic form, many patients are left wondering where to turn for help. Most people believe if they get sick, they go to the doctor, have some tests run, they are able to pinpoint the problem, put you on a course of treatment and you on your way to recovery. You may question Lyme with your doctor. They may tell you that if you had Lyme disease, you would have noticed a tick bite and bull’s eye rash (erythema migrans). Your doctor may believe there is still a possibility and would run standard Lyme labs. If the labs come back negative, they feel confident in ruling it out. No rash, no positive test results, no Lyme. This is the most dangerous of misconceptions, leading to years of suffering on the part of the patient.
I myself fit into those categories. I never had a bull’s eye rash, my standard (ELISA) Lyme and coinfection labs were negative, yet I still had Lyme and coinfections, and they are not easy to treat.
I was caught up in that painful cycle of visiting specialist after specialist for years in one of the best hospitals in Boston, trying to figure out what was making me so sick. My symptoms were so numerous, even I was afraid to add new ones to my list, for fear that the doctor would question the validity of my illness all together. Over the past three years multiple doctors in three different hospitals ran separate Lyme panels. I was also tested for Anaplasmosis, Ehrlichiosis, Rocky Mountain Spotted Fever, Babesia, Bartonella, among others. All tests were negative. I asked an infectious disease doctor, could this still be Lyme? I had heard stories about people who had been sick for four or five years, and it was Lyme the whole time. I read the symptom checklist. I had over 50 symptoms on that list. Yet, the labs said no. The doctors said no. Who was I to argue or challenge someone who was highly respected as a professional in their field. The infectious disease doctor tested me for everything he could think of. He kindly looked at me and reassured me that for as sick as I was, and as long as I had been sick, if it was Lyme, it would have already showed in the tests. Months later, when I recounted that conversation with my LLMD (Lyme Literate MD) he chuckled in a horrified yet unsurprised manor.
How is it possible that all of these tests are showing up negative, yet the patient is still inflicted with Lyme or other TBI’s? There are many varied reasons why these tests end in negative results in infected people. Their bodies may not be making the antibodies that the tests are built to pick up, they may have a different strain of the bacteria that is not being tested for. Standard testing goes after just a few strains, where there are numerous other strains they have not yet developed testing for. There are other reasons as well, but they all point to the same thing. The tests you are getting at your primary care’s office or in the emergency room may not be a clear assessment of whether or not you have Lyme disease or any other TBI. They are generally running a two step test. If the first result is positive, they will go on to the second step which is the Western Blot. Unfortunately, if the first step is negative the process is abandoned. Western Blot testing is helpful in attaining a positive Lyme diagnosis as there are bands that are Lyme specific. If you are found to have any of these bands, the probability that you have Lyme is substantially higher. There are other labs that are more “Lyme Friendly”, they are more sensitive to picking up Lyme bacteria in these tests. For this reason they are considered controversial in some circles. LabCorp and Igenex are examples of such labs. Igenex being the favorite go to lab within the Lyme community. Not many doctors use these labs, outside of a LLMD. This issue begs that Lyme should be a clinical diagnosis. Doctors should assess the patient’s history, symptoms, rule out all other conditions and then make the diagnosis, using labs as supporting evidence. The CDC also recognizes that Lyme should be a clinical diagnosis, so why is this not the case? Why are we bound by our labs?
That brings us to the next misconception. Lyme is easy to treat. Most people can recount stories of friends, or friends of friends who had Lyme, and they were fine in no time! It wasn’t a big deal. They had a tick bite, developed a traditional bulls eye rash (erythema migrans) went to their doctor, had their Lyme panels drawn, and left with a prescription of Doxycycline. The majority of them, after a month’s worth of doxycycline, were on the mend and back to life as usual. They may or may not have developed debilitating symptoms during that time, but were doing well after the course of antibiotics was completed. These folks are in what is the beginning stages Lyme disease. The longer the disease goes undetected, the harder it is to treat or eradicate. Many people go months to years, even decades fighting the bacteria, until their bodies can no longer function at a normal capacity and the disease sidelines their lives. They have developed a chronic condition that can take years to a lifetime to get under control. Not necessarily eradicate, but to put into remission. There are sufferers who cannot take antibiotics, or choose not to and go the herbal route. Some travel the world looking for relief, when traditional avenues don’t work for them. There are a vast number of patients who do a combination of approaches, leaning heavily on long term antibiotic usage. We have been taught that years of overprescribed antibiotics can do us harm. In this case, the positives of relief from a painful and debilitating disease, outweigh the negatives. In some severe cases, oral antibiotics are not enough. Other options are intermuscular injections of antibiotics and intravenous antibiotics. On top of the antibiotics, there are countless supplements and herbals used to right all the wrongs Lyme has inflicted on the body. At this point, the Lyme bacteria has made it into several areas of the body, including the central nervous system, soft tissues, bones, heart, joints, etc. Not every patient is the same, not everyone has the same symptoms and damage, thus making it complicated to treat. What most people don’t realize, it is rarely just Lyme. The tick can transmit a number of bacterial, and viral infections. There can be conditions that are caused or aggravated by the Lyme, like immune deficiencies, adrenal, thyroid issues, cardiac issues, autonomic nervous system problems, heavy metal toxicity and previously acquired viruses like Epstein Barr, Parvo Virus, CMV, Herpes Simplex Viruses to name just a few. All of these factors combined make treating a Lyme patient much like peeling an onion. Layer after layer, there is something else you must contend with. Once you get something under control, there is something else yet to deal with.
Health insurance these days is a necessity. If you get sick and need treatment, you are more than likely relieved that you have insurance to cover it. This is not always the case with Lyme disease. Most chronic Lyme patients spend thousands of dollars a year (if not more) on their treatments trying to get better. On top of the antibiotics, I take upwards of 70-80 pills a day. The IDSA, Infectious Disease Society of America feels that a month’s worth of antibiotic treatment is all that is needed to kill the Lyme bacteria. They are the ones who write the treatment guidelines for the insurance companies. This is their recommendation. There are companies, that will cover long term antibiotic usage, but many will not. I had a CDC positive western blot through Igenex Labs, I had another positive Lyme antibody lab taken at a prestigious Boston hospital. I was still denied the 28 days because there was no proof of borrelia burdorferi (the bacteria that causes Lyme) in my cerebral spinal fluid. This is not a test that is commonly used to diagnose Lyme. It is the equivalent to dropping a fishing line into the water and pulling it out, declaring there’s no fish in pond. Most people are shocked when I tell them I pay around $1000 every two weeks for my iv treatments. That does not include the thousands of dollars spent on supplements. My insurance covers none of it.
My own personal experience is that it took three solid months on oral antibiotics, two different ones, to notice any form of improvement. After that period of time, I started to notice a slow and steady decrease in symptoms. After five months we switched to intermuscular injections which proved a more rapid decrease in symptoms, finally at nine months I was switched to intravenous antibiotics and have had the most progress to date, bringing me closer and closer to remission. One months worth of oral antibiotics was not going to cure me of Lyme disease. My case had gone unnoticed for nineteen years. The past four years my life had become severely altered. I was confined to a wheel chair if I needed to leave the house, and was house bound and bed ridden the rest of the time. Nineteen years of a disease inflicting damage upon your body does not disappear within a month.
Another obstacle in this process is that most LLMD’s (Lyme literate medical doctors) do not take insurance. This is unfathomable to most people. Insurance companies who won’t pay for desperately needed medications and doctors who won’t take insurance. Why would a doctor not take insurance and why would you want to see a doctor you had to pay out of pocket for? Lyme patients learn quickly to get over this hurdle. Healthcare is different from days past. Insurance companies dictate how much time is spent with a patient. One issue for doctors who treat Lyme patients, is that each case is individual and complex and the time spent evaluating and discussing treatment is far greater than what is allowed by insurance. The other issue being that treatment of Lyme requires more intensive antibiotic therapy than allotted by the insurance companies. This has put a virtual bull’s eyes on the backs of this small group of doctors. Leaving them vulnerable to lawsuits and having their medical license stripped. There is a growing group of doctors and naturopaths who recognize this epidemic and have committed to helping Lyme patients.
Lyme is not a simple disease. Finding an accurate diagnosis can be as easy as a bull’s eye rash and a positive lab result, or as difficult as searching years for a doctor who knows how to recognize and diagnose the issue. The answer to Lyme is not as simple as modern medicine. Finding the right course of treatment for your body can take time. It truly is an integrative approach. There are so many facets of the body that have been effected by the disease. The immune system has been devastated, you will need help detoxing toxins out of your system, you will be vitamin and mineral deficient after years of malabsorption. The majority of the support your body will need to repair may come from natural supplements rather than pharmaceutical drugs. In addition to your medications you will need to make lifestyle changes that will be guided by your doctor. I have gone gluten free, sugar free, dairy free, yeast free, alcohol free, and caffeine free. I am vigilant in protecting my body from everyday toxins that have added to my failing health and may create obstacles in my recovery. My diet has never been so clean. I had never been so sick. When you have cleared all of the previous obstacles and you are finally on the road to recovery you are met with financial landmines. Lyme recovery can be as frustrating as a game of Monopoly. Insurance companies denying coverage for the medications you need to get better. Medications that would be covered for an ailment by a different name. Treatments, protocols, supplements and doctors’ visits paid for out of pocket become common practice. I have learned that if you don’t have your health, nothing else matters. I have also learned to trust my instincts and to take my health into my own hands and to advocate for myself. A wise doctor once told me, “Just because it doesn’t fit into their “box” doesn’t mean it doesn’t exist. Find someone who will treat you.” Those were words to live by.