Chronic Lyme Disease: Misdiagnosis and Treatment. By: Edward Liger Smith

6/22/2024

Chronic Lyme Disease: Misdiagnosis and Treatment. By: Edward Liger Smith

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Acute Lyme disease is a tick-borne illness caused by the Borrelia burgdorferi bacteria. Acute Lyme is well understood by the medical community. The disease can be tested for via blood sample and most cases are resolved within less than 28 days of taking antibiotics. Chronic Lyme disease on the other hand is an illness which is sometimes diagnosed in patients who experience long term symptoms after being treated for acute Lyme disease, or who experience the symptoms without ever testing positive. The CDC found that 5-20% of Lyme patients experience long term symptoms after being treated for an acute form of the disease. They experience fatigue, joint pain, bell’s palsy, and cognitive issues for months and even years in some cases. Some doctors who claim an expertise in Lyme disease label themselves as “Lyme literate” to attract patients with these long-term symptoms. Other medical professionals have criticized these Lyme literate doctors, claiming they belong to the ‘chronic Lyme industry’ and utilize the disease to make money. (Combatting Lyme Disease Myths).

Much of the research on Chronic Lyme disease has been inconclusive. Some studies say that the Borrelia burgdorferi bacteria could potentially be protected in a biofilm, allowing symptoms to persist, but causing blood tests for Lyme to come up negative. (Lacout). Some doctors prescribe increased doses of anti-biotics to kill surviving bacteria. However, one thing Lyme related studies agree on is that over prescription of antibiotics is harmful to the gut and causes symptoms of its own. Research into Lyme is complicated by the fact that so many patients have previously been prescribed large doses of antibiotics, making it difficult to identify if long term symptoms are coming from bacteria, or damage caused by antibiotics. Recently scientists have focused efforts on developing an antibiotic which targets the bacteria without causing patient side effects. (Leimer 2021). This shows promise in the effort to understand and treat the thousands of people suffering from long term Lyme disease symptoms, but much more research is needed to fill in the gaps of our knowledge about the chronic form of Lyme disease, how it differs from acute Lyme, and how it can be treated without harmful side effects.

Quantitative Research into Chronic Lyme

In 2019 the Canadian Medical Association published a journal to counter myths from what they call the ‘Chronic Lyme Industry’ (CMAJ). In the journal is a survey taken among students at Alberta Medical School which found that 30% of doctors felt pressured to prescribe antibiotics for Lyme disease and 90% felt unprepared to handle patients with chronic Lyme. This highlights the lack of education and training mainstream medical professionals are given surrounding Lyme, even though a chronic form of the disease effects an estimated one million people. (Lyme Disease facts and Statistics).

The Canadian Medical Association has begun providing clinical toolkits for healthcare providers in areas where Lyme is highly prevalent. The toolkits provide educational information on the most up to date Lyme research, and clinical guidelines for how to treat patients experiencing symptoms, or who were diagnosed with chronic Lyme by a separate provider. The Association suggests giving only one dose of antibiotics then closely monitoring changes in the patient’s symptoms even after the dose has ended. While it is far from a solution for those who suffer from chronic symptoms, the educational efforts should decrease the prevalence of antibiotics being over prescribed and causing side effects worse than the disease itself.

The journal’s recommendations to doctors may be a positive step, but it also highlights the need to increase both what we know about the chronic form of Lyme, and how it can be treated in patients. A 2021 study was conducted using 127 kids with a history of Lyme, 47 of whom were suffering symptoms worthy of a Lyme diagnosis. The study found that for most patients their symptoms dissipated proportionally as time passed. Others however, remained symptomatic well after treatment. The study concluded that more diagnostic research will be needed to discern between novel cases of Lyme, and previous cases which are followed by ongoing symptoms. (Lantos, 2021). The study shows the need for increased research to help medical professionals discern between acute and chronic Lyme disease. A stricter definition needs to be developed for Chronic Lyme and what specifically characterizes the condition.

Modern Methods of Treatment.

MD Paul Lantos was involved in conducting the previous study also helped craft the CDC guidelines for Lyme treatment in 2020. The CDC guidelines are like those from the Canadian Medical Association in suggesting doctors refrain from administering a second dose of antibiotics to treat lingering symptoms. The debate surrounding Lyme Treatment has largely been over whether more than one dose of antibiotics should be administered to to treat lingering symptoms beyond the acute stage. Some doctors argue that multiple cycles of medication are needed to kill resistant bacteria. On the other hand, most medical professionals argue the antibiotics themselves will end up being more harmful than symptoms of chronic Lyme.

A study from 2001 tested two different control groups of people who had been treated for acute Lyme but were now experiencing chronic symptoms. Those conducting the study administered antibiotics to one control group, while giving the others a placebo. The study concluded that 90 days of additional antibiotic treatment did not result in any significant increase in health outcomes for the control group vs the placebo. (Klempner, 2001). A cohort study in 2010 found similar results after conducting follow up surveys with patients treated for chronic Lyme. The surveys found no difference between patients treated for less than ten days compared to patients treated for longer. (Kowalski et al., 2010). The studies are conclusive in that increased doses of antibiotics do not appear to be effective in combatting symptoms of chronic Lyme.

The studies agree that increased medication is not the solution to treating chronic Lyme, but they are also in agreement that chronic Lyme needs to be treated. Both studies report a lower baseline standard of health and wellness for patients with chronic Lyme symptoms. Alternative treatment methods need to be researched and developed to help those suffering from the disease. New research in 2021 attempted to create an antibody which targets the Lyme bacteria exclusively, while preventing gut damage that often accompanies standard medication. (Leimer,2021). Those who suffer from the symptoms of Lyme are counting on the development of new forms of treatment, or revolutionary innovations in older methods.

Criticism

A 2007 an article titled A Critical Appraisal of “Chronic Lyme Disease” was published in the New England Journal of Medicine arguing that Chronic Lyme Disease does not exist as it has no concrete scientific definition. Instead, the article divides patients into groups based on how long they have experienced lingering Lyme symptoms. Those experiencing symptoms for less than six months have post-Lyme disease symptoms. Those whose symptoms go on past 6 months have Post-Lyme Disease Syndrome. (Feder, 2007). Similarly, those with Lyme who are being studies are divided into four categories based on their history with the disease. Dividing the chronic Lyme into separate stages, and those who suffer from it into categories, appears to be a positive step in the development of Lyme research. Many future studies built from these categories which added specificity to who and what is being researched.

Despite making advancements in how we think about Chronic Lyme, the study is outdated, and highlights the need for additional modern research into chronic Lyme. The article claims that post Lyme-disease symptoms are “mild and self-limiting subjective symptoms.” The authors go on to say that many who are diagnosed with chronic Lyme do in fact have post-Lyme disease Syndrome. However, many others have never been infected by the bacteria and were simply misdiagnosed by doctors masquerading as experts on chronic Lyme. Additionally, they add that 40% of chronic Lyme patients show improvement when given a placebo. The implications of these statements are clear when read within the context of the full article. The authors are not only arguing against chronic Lyme as a scientific concept, but they are also implying that a substantial portion of those diagnosed with the disease are essentially faking their symptoms. Near the end of the article the researchers give there “Advice to Clinicians” for Doctors handling patients with chronic Lyme. The section urges clinicians to tell their patients that scientific evidence has shown chronic Lyme disease likely does not exist, to check the patients for other issues, and then to abandon treating the disease to offer emotional support.

In many ways the 2007 article exemplifies an advancement in our understanding of chronic Lyme disease, which influenced future research and what we know today. The authors argue that there is no scientific evidence showing a connection between the Borrelia burgdorferi bacteria and the complex of symptoms associated with chronic Lyme. This claim is important to our overall understanding of Lyme disease and is backed up by evidence. The implication that a substantial portion of patients are imagining their symptoms is not.

It’s encouraging to see that since 2007 there has been a mountain of new research done on chronic Lyme disease. Identifying that an increased dose of antibiotics is not helpful in treating long term Lyme symptoms, does not mean giving up on treatment for those suffering from these symptoms. Perhaps alternative care methods to medication would be helpful, or changes in nutrition and diet. Any method of treatment will likely be an improvement over telling patients their disease doesn’t exist and providing vague emotional support. The healthcare system should adapt to the needs of patients, and not turn away those whose illnesses don’t fit into the framework of existing medical theory.

Conclusion

The existing research on chronic Lyme shows that there have already been years of debate surrounding chronic Lyme. The disease’s prevalence, its diagnosis, how it should be treated, whether it should exist at all? These are all debates that have been waged by medical professionals when discussing chronic Lyme disease. Even though many professionals don’t recognize the label ‘chronic Lyme disease’ itself, all studies on the subject recognize many people who suffer from symptoms associated with it.

The debate to determine whether long term suffering from symptoms should labeled as ‘post-Lyme symptoms’ or ‘chronic Lyme disease’ is mostly an argument among academics practicing medicine. While good information has come from these debates, from the outside looking in it often appears that some medical professionals are more concerned with arguing their own preferred stance on Lyme, rather than collaborating with other professionals to find innovative solutions. Going forward medical professionals should do their best to rid themselves of preconceived biases about chronic Lyme. Collaboration and innovative thinking is needed to investigate the root causes of these long term symptoms, and develop new and effective methods of treatment for the thousands who suffer symptoms.

Works Cited

Association Journal (CMAJ), 191(50), E1389–E1389. https://doi.org/10.1503/cmaj.191616

Lacout, A., El Hajjam, M., Marcy, P.-Y., & Perronne, C. (2018). The Persistent Lyme Disease: “True Chronic Lyme Disease” rather than “Post-treatment Lyme Disease Syndrome.” Journal of Global Infectious Diseases, 10(3), 170–171. https://doi.org/10.4103/jgid.jgid_152_17

Leimer, N., & Xiaoqian, W. (2021). A selective antibiotic for Lyme disease. Science Direct. https://www.sciencedirect.com/science/article/pii/S0092867421010588

Chronic symptoms. Lyme Disease. (2018, April 16). Retrieved October 10, 2021, from    https://www.columbia-lyme.org/chronic-symptoms.

Lyme disease facts and Statistics. Bay Area Lyme Combatting Lyme disease myths and the “chronic Lyme industry.” (2019). Canadian Medical Foundation. (2021, January 20). Retrieved October 10, 2021, from https://www.bayarealyme.org/about-lyme/lyme-disease-facts-statistics/.

Lantos, P. M., Balamuth, F., Neville, D., Garro, A. C., Levas, M. N., Bennett, J., Thompson, A. D., Kharbanda, A. B., Branda, J. A., & Nigrovic, L. E. (2021). Two-tier lyme disease serology in children with previous lyme disease. Vector-Borne and Zoonotic Diseases. https://doi.org/10.1089/vbz.2021.0030

Klempner, M. S., Hu, L. T., Evans, J., Schmid, C. H., Johnson, G. M., Trevino, R. P., Norton, D. L., Levy, L., Wall, D., McCall, J., Kosinski, M., & Weinstein, A. (2001). Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of lyme disease. New England Journal of Medicine, 345(2), 85–92. https://doi.org/10.1056/nejm200107123450202

Kowalski, T. J., Tata, S., Berth, W., Mathiason, M. A., & Agger, W. A. (2010). Antibiotic treatment duration and long‐term outcomes of patients with early lyme disease from a lyme disease–hyperendemic area. Clinical Infectious Diseases, 50(4), 512–520. https://doi.org/10.1086/649920

Feder, H. M., Johnson, B. J. ., O’Connell, S., Shapiro, E. D., Steere, A. C., & Wormser, G. P. (2007). A Critical Appraisal of “Chronic Lyme Disease.” The New England Journal of Medicine, 357(14), 1422–1430. https://doi.org/10.1056/NEJMra072023

Rumbaugh, J., & Lantos, P. (2020). Lyme disease. IDSA Home. Retrieved October 10, 2021, from https://www.idsociety.org/practice-guideline/lyme-disease/.

Author

Edward Liger Smith is an American Political Scientist and specialist in anti-imperialist and socialist projects, especially Venezuela and China. Eddie works as a director for the Midwestern Marx Institute. He also has research interests in the role southern slavery played in the development of American and European capitalism. He is a wrestling coach at Loras College.

Chronic Lyme Disease: Misdiagnosis and Treatment. By: Edward Liger Smith

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