What is Lyme disease?
Lyme disease (Borreliosis) is a bacterial infection with a spirochete from the species complex Borrelia burgdorferi. It is thought to be acquired from the bite of an infected Ixodes, or black-legged, tick, also known as a deer tick. Borrelia burgdorferi sensu stricto is the predominant cause of Lyme disease in the U.S.; Lyme disease in Europe is more often caused by Borrelia afzelii or Borrelia garinii.
The disease varies widely in its presentation, which may include a rash and flu-like symptoms in its initial stage, followed by the possibility of musculoskeletal, arthritic, neurologic, psychiatric and cardiac manifestations. In most cases of Lyme disease, symptoms can be eliminated with antibiotics, especially if treatment is begun early in the course of illness. It is unclear if the disease can be fully eradicated.
Delayed or inadequate treatment may often lead to "late stage" Lyme disease that is disabling and difficult to treat. Amid great controversy over diagnosis, testing and treatment, two different standards of care for Lyme disease have emerged.
A percentage of patients with Lyme disease have symptoms that last months to years after treatment with antibiotics. It seems likely this is due to inadequate diagnosis and treatment. These symptoms can include muscle and joint pains, arthritis, stiff neck, cognitive defects, neurological complaints or fatigue. The cause of these continuing symptoms is not yet known. There is some evidence that they may result from an autoimmune type of response, in which a personís immune system continues to respond even after the infection has been cleared, as well as evidence of ongoing infection with the spirochete. It is common for Lyme patients to develop multiple allergies, sleep problems, and in women, endometriosis.
The diagnosis for Lyme is a clinical one. Availible tests can be up to 70 percent false negative, so the standard ELISA test is unlikely to return a positive test result especially for the sickest patients.
Igenex has one of the best Western blot tests availible. For some a short course of antibiotics before testing can increase the chances of getting a positive test. While there are many antibody bands that may be tested, some of them are very specific to Lyme. The CDC has designated specific bands for a "CDC positive" test, unfortunately some of these are not specific to Lyme, and depending on the bacterial strain, may not appear positive for many patients.
It is believed that when caught within the first week or two of initial infection the disease may be treated with a course of oral antibiotics not less than 30 days in duration. The lifecycle of the bacteria is around 30 days so it is important to treat with that in mind. Another issue that can be a problem is the bacteria has three states, the normal spirochete, the "L" form (no cell wall), and the cyst form. Because of this it can be difficult to fully eradicate the disease, and for patients that were not promptly treated, it may be impossible to fully eradicate all forms of the bacteria.
For patients with undiagnosed or late stage Lyme, a course of IV antibiotics is usually necessary to get improvements in symptoms. Alternatively, IM bicillin has shown to be effective for some patients, though these are very painful and not everyone can tolerate them.
In addition to treating the Lyme disease, most patients have other tick co-infections. One of the keys to successful treatment is to identify and treat other problems such as Babesiosis, Ehrlichiosis, and Bartonella (or "Bartonella-like") infections.
Many patients also have severe allergies, heavy metal poisoning, and viral infections such as HHV6, and Ebstein-Barr (mononucleosis) which must be controlled before a patient will start to see improvements.
An excellent guideline from Dr. Burrascano can be found in pdf format here. This paper covers the details of treating both Lyme and other tick co-infection, along with some supplement guidelines.
With the right treatment many patients can find improvement to quality of life and are able to return to normal activities. The average course of treatment for patients with late stage Lyme is three years.
Unfortuanately the IDSA and many insurance companies are promoting the idea that 30 days of antibiotic treatment is adequate for any stage of Lyme, and further treatment will not show improvements. Most late stage or undiagnosed patients find this to be inadequate to show any improvement in symptoms. While the IDSA claims that the guideline takes the current research into account, in fact they only reference a small portion of the availible research, much of it referenced is biased. Currently the IDSA is under investigation by the General Attorney of Conneticut
Finding a Lyme literate doctor (LLMD) is the most important key to treatment. Further it is very important to find a doctor willing to use their best judgement for treatment rather than one that strictly follows unproven guidelines such as the IDSA guideline.
http://www.lymediseaseassociation.org Lyme Disease Association
http://ilads.org/ International Lyme and Associated Diseases Society
http://calda.org/ California Lyme Disease Association