A struggle for people who are affected by Lyme Disease is that the politics that surround the diagnosis and treatment of the disease have hurt the effectiveness of treatment capabilities and research. This debate has quickly become a passion of mine as it has affected myself, and many other people! One of the most informational books I’ve read is the book How Can I Get Better? by Dr. Richard I. Horowitz MD, he states, “don’t get me wrong, the newly discovered research is incredible. However, the doctors are still using the outdated Infectious Disease Society of America (IDSA) guidelines as a basis to forego long lasting antibiotics because of a concern of resistance.” They made there decisions on three NIH-funded trials that targeted chronic Lyme disease. Each of these trials were based off of small sample sizes, being less than 100 participates. Studies this small do not have the power to measure sufficient statistical measurements for the entire population, especially of a diverse disease such as Lyme! But, two of the three clinical trials demonstrated that retreatment improved some patient symptoms that included fatigue, pain, and cognitive function in those with Lyme encephalopathy. 2016 European Lyme study showed the same results, with statistically significant results seen when all patients were on Rocephin. However, patients did not see a continued improvement with oral antibiotics, so they stopped them. They did not incorporate any of the new scientific data on pulsing, persisters, and biofilm forms, or treat the co-infections that are carried in ticks. Why are the new publishers not using the new research???
Federal funding for Lyme disease is far behind other infectious diseases. Hence, why so many individuals go misdiagnosed for so long, going from doctor to doctor without a clear definitive. In August 2015, CDC researches stated that chronic Lyme sufferers have been shown to be as sick as chronic congestive heart failure. So why are they not getting more help and research? Ill patients begin to have so much of there lives affected and disabled if they are not treated early enough after being bitten by the tick. The problem has yet worsening effects as insurance companies deny treatment, by basing the decision on outdated IDSA guidelines. Through my own experiences, the patient has to have very good insurance to get some approvals. Even then, it is very difficult.
A concern in the medical community is for antibiotic resistance, and overuse. This concern is a barrier to trying to adopt long-term antibiotic strategies. However, Northeastern University shows that borrelia creates antibiotic tolerant cells. Doctors wouldn’t deny treatment to a person with a life-threatening chronic infection such as, Q fever, TB, and Leprosy because of being scared of resistance. Dr. Horowitz states, “we have to use combination drug regimens in these diseases to prevent resistance, as we know that some of these infections persist because of there biofilms.” However, the new research on pulsing, persisters, and biofilm busters are giving a refreshing hope to helping to find answers for chronically ill Lyme and the associated co-infections.
If you have Lyme and or any co infections of Lyme, I highly recommend How Can I Get Better?: An Action Plan for Treating Resistant Lyme & Chronic Disease By Dr. Horowitz. It is now a national bestseller as it provides incredible amounts of knowledge and medication options to recommend to your doctor that include new research!
Horowitz. Richard, I. MD. How can I get better? an action plan for treating resistant lyme and chronic disease. (2017). St. Martins Griffin. (pp. 116-117)