Why is Lyme disease so difficult to treat? Why can doctors prescribe years worth of antibiotics for acne but not for a bacterial infection of Borrelia burgdorferi (Lyme bacteria)? Lyme bacteria can be treated within the first six weeks of a tick bite, but what about the other bacterial and parasitic infections ticks carry? If easily treated, why are so many people denied immediate care, moving on to chronic, debilitating stages of the disease?
There are adamant deniers of chronic Lyme. A story I like to relay involves a Lyme specialist and her most aggressive critic. Both highly educated and recognized medical physicians, my doctor tested for and treated chronic Lyme. The other physician spent much energy denying the existence of Lyme and smearing her as a “quack.” Then one day his son became ill. No testing could point to what was wrong. No treatment was working. His son grew dangerously worse. In the end, it was determined his son had Lyme. And who was the first person this man took his child to? Yep, my Lyme specialist. And she was able to help. After a hefty helping of humble pie was served, the once critical physician became a great admirer of my Lyme specialist.
Until it happens to you or your child, the Lyme pandemic may seem unlikely or far-fetched. But Lyme disease can be debilitating and has a history of ruining lives. Although there is no one cure or protocol that works for every case, people can find help. Unfortunately it takes lots of research, investigation, trial and error, patience, and money to get well. This article highlights the reasons Lyme is difficult to diagnose and treat, why treatment in mainstream medicine is often denied, and what people can do to seek help.
#1: Lyme Manifests Itself in Various Ways.
Unlike chicken pox that presents obvious symptoms and is easily recognized, or the fever and tell-tale spots of strep throat, Lyme manifests in numerous ways, making it difficult to pinpoint and diagnose. One person will seem to have an unending flu. Another will have migrating pain and migraines. Another person infected with Lyme and coinfections will suffer from chest pain, shortness of breath, anxiety, and coagulated blood. Lyme can cause lesions in the brain and nerve damage, not unlike MS. It causes brain fog, fatigue, and pain of fibromyalgia. Mimicking other diseases, Lyme often goes undetected.
In the beginning, not the thousands of years ago when Otzi the Iceman was infected with Lyme, but in the 1970s, scientists first detected that ticks in Lyme, Connecticut were making people sick. In that community, the tick-bourne infection manifested as arthritis, with rashes and swollen knees. Because it presented as arthritis, some of the first researchers on the scene were rheumatologists. As such, the “new” disease was studied from the viewpoint of arthritis-like symptoms. Later, when people in other areas contracted the bacteria and did not present a rash or develop arthritis, they were dismissed as not having Lyme. Anyone suffering from seizures, cardiac episodes, or myalgia did not “fit” the classic idea of Lyme disease. Rarely does anyone develop the bull’s eye rash or have knee-swelling anymore. Yet those are still the symptoms physicians are required to look for when diagnosing Lyme.
“The problem, says Raymond Dattwyler, today a professor at New York Medical College in Valhalla, New York, is one of perspective. “It’s unfortunate that in the U.S., the rheumatologists studied Lyme disease first,” he says. “Lyme disease is a multisystemic infectious disease that impacts many organs. But because the early work was done by rheumatologists, the prism through which we viewed the disease was artificially narrow, and impeded research for years.” Cure Unknown, pages 52-53.
So, one reason Lyme goes undetected and untreated is because the definition of the disease is too narrow and ill-defined.
#2 Our Understanding of Bacterial Infections Is Outdated.
Decades ago studies made clear that bacterial infections could not survive six weeks of antibiotics. Many still feel this way. However, Lyme bacteria does survive despite long-term antibiotic treatment. People with Lyme sometimes do not get better or relapse when taken off antibiotics. Borrelia burgdorferi is adaptive and rather persistent. It has defence mechanisms that prevent effective annihilation by medication. First, it can alter forms. It can go from spirochete to cyst to hiding in other types of cells. The bacteria burrow into tissue, in difficult places for antibiotics to reach. Some medications do not cross the blood-brain barrier where Lyme likes to live. Biofilm, the sticky substance that acts like a shield against immune fighter cells and antibiotics, surrounds colonies of bacteria. All these adaptive ways to survive make “normal” antibiotic treatment protocols for infections ineffective (especially if prescribed years after the tick bite; acute care for immediate tick bite and infection is different).
Unfortunately, ignorance of how Lyme works coupled with arrogance that we know everything about bacterial infections leads to poor treatment methods. Many believe those remaining ill after a round or two of antibiotics are just “post infectious” and suffering from an immune problem triggered by the initial tick-bourne infections. Although the immune dysfunction piece is true, Lyme bacteria (Borrelia burgdorferi) can persist beyond even a year of treatment. Even after intensive combinations of antibiotics over many months, live DNA of Lyme bacteria has been found. Researchers have witnessed cysts becoming spirochetes and then returning to cyst form, proving it is a persistent bacterium, which is highly adapted to our techniques of trying to kill it.
However, people are getting well after enduring years of long-term antibiotic treatments (in combination, oral and IV that kill all forms of the bacteria and the coinfections). Others use plant medicine and find the herbal approach most effective. Regardless, long-term treatment has been successful.
The reason most physicians do not prescribe long term treatment, even the Lyme literate physicians, is because it is not approved by the CDC or College of Physicians and Surgeons. The hands of our doctors are tied. They face losing medical licenses and the right to practice when claiming Lyme is persistent and long-term medication is required. This is a tricky position to be in. Of course it is not healthy in many respects to be on antibiotics long-term. It kills the gut flora, creates side effects, and can lead to other resistant infections like staph. But if we don’t provide long-term treatment to Lymies they can suffer cardiac issues, coma, and death. It is difficult to deny patient long-term antibiotics when doing so in other cases has returned sight to the blind, ended seizures, cleared speech that once was slurred, and enabled mobility when one used to be in a wheelchair.
In the highly recommended and thoroughly researched book, Cure Unknown, Weintraub writes, “Lavoie explained that he saw Lyme disease in the context of syphilis- a progressive, neurodegenerative disease that inhabited the brain and could require rounds of antibiotic, sometimes in combination and at very high dose. Treating Lyme disease, Lavoie believed, was like peeling an onion: You had to strip infection away slowly, a layer at a time. With every peeling, the patient would first sink deeper into disease as the organisms died off (an extended Herxheimer) and then rise up to the next level as damaged tissue healed. Lavoie thought different layers of the illness required different treatments; so when Lavoie’s patients hit a plateau on one antibiotic, he upped the dose or changed the antibiotic altogether. The peel could take years- or, for those longest-infected or most immune-compromised, Lavoie believed, forever.” Pg 136
#3 Care Is Too Expensive
Lyme isn’t new. There was evidence of and treatment for Lyme in Europe in the 1930s. European medical journals discuss a spirochete bacteria, not unlike syphilis, carried by ticks that made Europeans ill. Penicillin was administered with good results. For some reason, North American researchers do not look to those studies or history of the disease. We are treating Lyme like a “new” pandemic, and seemingly starting from scratch.
“The strange syndrome had already been described in the medical literature many times over when, in 1930, the dermatologist Sven Hellerstrom of the Karolinksa Institute in Stockholm associated the peculiar rash with central nervous system disease, specifically meningitis (swelling of the brain’s lining) and encephalitis (swelling of the brain itself). He speculated that the culprit was a spiral-shaped bacterium- a spirochete- transmitted by ticks. Almost twenty years later, at the dawn of the antibiotic age, Hellerstrom presented more findings at the forty-third annual meeting of the Southern Medical Association in Cincinnati. Not only did he connect the rash, the tick bite, and neurological disease, he also reported on successful treatment with antibiotics. His findings were published in the Southern Medical Journal in 1949.”Cure Unknown, page 82.
The research has been skewed in many studies to meet the goals of political and monetary gain. One need only study the Deerborn report to find evidence of faulty logic at best, and purposeful dismissal of truth at worst. Sadly, some of the North American research aims to “prove” Lyme is not a big problem and is easily treated.
However, using studies from other countries and current findings about tick-bourne infections, we now know that ticks carry debilitating infections that result in a multi-system dysfunction of the entire body. There is enough evidence of the true nature of Lyme (whether through studies or patient experience) that we must acknowledge we were wrong. We did not know everything about bacterial infections. We did not understand until recently the adaptability of this particular infection. But admitting this means the specialists and mainstream health system are then “liable for medical neglect- for failure to diagnose and failure to treat. So they are doing the only thing they can – denying that chronic Lyme disease even exists.” Cure Unknown, pg 141.
Sadly, there was corruption involved in the US, which still dictates how Canada deals with the disease. Often the doctors consulting for insurance companies were the ones who denied the existence of chronic Lyme disease in treatment guidelines. This meant the insurance companies did not have to pay out thousands of dollars each month for combination antibiotic treatments long-term.
“In the early days of the epidemic, before anyone grasped the scope of the problem, insurance companies could be flexible about treatment for Lyme disease, covering many weeks or months of intravenous Rocephin, and paying for a hospital stay to boot. But as the number of Lyme cases increased, cost became enormous, and the insurers rebelled. By August 1992, Prudential, Metropolitan Life, and Blue Cross Blue Shield of New Jersey, among others, had imposed an intravenous antibiotic limit of twenty eight days. “ Cure Unknown, page 303-304
With so few people “passing” the faulty two-tiered testing standards, and so much resistance against the possibility of persistent infection, Infectious Disease Specialists and insurers are free to deny long-term treatment. Looking up from the paperwork, leaving the ivory tower, and seeing the debilitated, immobile patient seizuring and twitching would show them something is seriously wrong. But it is easy to say no to someone you don’t have to look in the eye or watch suffer.
Mostly, pharmaceutical companies want to focus energy and funds on a vaccine not treatments. To date, all trials of Lyme vaccines have been unsuccessful, even causing chronic Lyme and paralysis. Still, vaccines are being created in the hopes of selling a prevention and not a treatment or cure (the mere fact that vaccines are being created indicates that the Lyme does exist).
What Should I Do?
There are Lyme literate physicians worth visiting. Many NDs and TCM doctors treat Lyme successfully, too.The amount of literature on treating the disease is building. Previous articles on my website explain some effective treatment methods.
The most successful long-term treatment, whether pharmaceutical or herbal or a blend, involves combinations and pulsing. Treatment of Lyme in all its forms (spirochete, cyst, intercellular) is required. Then there is pulsing. Changing the combination of antibiotics every few months seems most effective. When spirochetes are lacking in nutrients or attacked with antibiotics they morph into cyst form. When the stress is removed, the normal spirochete form emerges. In the Cowden Protocol, for instance, a patient takes a combination of herbal tinctures for two weeks, then take a break for 36 hours. In that time, the infections become active and re-emerge because the “threat” is gone. Then a different combination of tinctures is taken, catching the infections off guard and killing a large portion of them. This pulsing cycle continues until all symptoms are gone.
Aiding the immune system is also an important piece of the recovery puzzle. There are books and websites dedicated to this kind of information.
I highly recommend studying the various protocols and then trying them out. If the first fails, do not quit. Try the next one. Perhaps blending a few protocols will be your ticket to health. It requires strength, patience, and a support system to overcome this disease.
Recommended reading includes books by: Dr. Bill Rawls, Dr. Richard Horowitz, and Stephen Buhner. Read online conference notes from ILADS, and the physicians such as Dr. Burroscano and Dr. Cameron. Find people on Instagram and Facebook who have found successful means of treating Lyme and connect with them. Keep reaching out until a solution is found.