Chronic Lyme Disease FAQ
What should someone expect after being diagnosed with Lyme disease?
Getting a definitive diagnosis of Lyme disease is often very difficult but once the diagnosis is made, it not only validates the patient's condition but also opens up treatment options for the patient. Many of these patients have suffered for years and have been told by many doctors that their symptoms are either in their head and they will just have to live with them. Receiving acknowledgement that there is a real disease causing their symptoms can be a huge relief but that is only the beginning of the work that will need to be done. The infection will need to be addressed and the immune system and all the damaged cells in the body will need to be healed. When someone is diagnosed with Lyme disease, screening for other tick-borne or insect-borne infections that are often found alongside Lyme disease is important. Some of these infections could be even worse than Lyme, so before starting treatment the full picture needs to be understood.
What is the course of treatment after being diagnosed with Lyme disease?
There are many different treatment options and it really depends on whether the Lyme is found alone or whether other infections are found with it. It is also important to know what else is potentially affecting the body and the immune system, such as environmental toxins like mold, heavy metals, stress and diet. Without understanding all the pieces of the puzzle, it will be very difficult to treat Lyme disease. Traditionally, antibiotics are used as first line treatment for acute lyme disease. Most often a drug called doxycycline is prescribed and while this is considered standard of care, the doxycycline might not be enough to really kill the lyme bacteria. There are many different "forms" of lyme and ways that the lyme bacteria, known as Borrelia burgdorferi, can evade the immune system. Sometimes additional antibiotics and/or herbs can be added for a synergism that will be more effective. For some patients herbal protocols alone can be used, particularly in the more chronic stages of lyme disease. Other treatment protocols, including homeopathy, Rifing, IV ozone therapy and the IV PK protocol can be very helpful for patients on their journey to recovery from Lyme disease.
What are possible side effects?
The biggest issue we see is a side effect called the "Herxheimer reaction." This reaction can be seen with any of the possible treatment courses used against Lyme disease and is believed by some to be a result of the "dying" of the bacteria releasing toxins and irritating the body wherever this is occurring. The reaction often resembles a worsening of the symptoms that the patient is already experiencing. I believe, based on preliminary research, that these reactions are likely due to a condition called Mast Cell Activation Syndrome or MCAS, which causes the release of inflammatory chemicals, like histamine, from Mast cells (a type of white blood cell) throughout various organs or tissues in the body. Mast cell activation in this scenario can occur in response to the different treatment modalities as well as to the infection itself. MCAS can cause severe and debilitating symptoms so it is critical that this disorder be diagnosed and treated appropriately. It is important to note, that while some Lyme patients develop MCAS, or are predisposed to getting MCAS, the reverse is not necessarily true. MCAS patients do not necessarily have Lyme disease or any other infection and it is still unclear what the trigger is for the development of MCAS in many patients.
What are some of the controversies surrounding the diagnosis of so-called chronic lyme disease?
The testing available for Lyme disease is sub-optimal for a variety of reasons.. The current assay being used by most labs only uses one strain of the bacteria, Borrelia Burgdorferi. But there are many strains of Lyme, so if the patient is infected with a different strain the test may not pick it up. In addition, the CDC has set criteria for the diagnosis based on the number of bands that are present on a Lyme test known as the Western Blot. Some patients will have the presence of some bands but will not meet the CDC criteria. These patients will likely be told that they do not have Lyme and will continue suffering without any help. Research is being done to develop better tests to help with the diagnosis, but we are not there yet. There is a test being done by IGeneX laboratory called a PCR test, or polymerase chain reaction test, which actually looks for the DNA of the Borrelia organism. If the PCR test is positive, it is suggestive that the infection is active but there are still limitations to this type of test.
What can you do to prevent being infected by Lyme disease again?
Prevention is critical and involves two paths. The first is protecting yourself and your clothing, the other is treating your lawn. In protecting yourself, you will need both insecticides and insect repellents. I recommend the use of the insecticide Permethrin on clothing so that the ticks will die if they climb on clothes. On the body, I recommend Picaridin, which is an insect repellent that lasts longer than the traditional DEET that is often used and is probably less toxic.
As far as your property and lawn, the current thinking is that dealing with the ticks that are being carried by the huge mouse population is the way to control the spread of lyme. Special bait boxes containing a safe insecticide, that kills the ticks on the mice, are put around the property. This has been shown to reduce the number of ticks that these mice are carrying, thereby decreasing the spread of diseases from these ticks.