Lyme disease: n. An inflammatory disease caused by a spirochete (Borrelia burgdorferi) that is transmitted by ticks, usually characterized initially by a rash followed by flulike symptoms including fever, joint pain, and headache. (from the freedictonary)
After hours of online and book reading, I will attempt to summarize what has stuck in my brain. Please comment with any additional information or possible corrections. I will add links at the bottom of this post for those of you who wish to begin your own fact finding mission. Caution: “facts” about Lyme seem to be fuzzy. Answers seem to hinge on who you ask.
The integrative medicine doctor that I saw for the hormone testing referred me to a Lyme literate doctor (LLMD) to investigate why my CD57 was 22. The CD57 is a test that measures a very specific part of the immune system. Both doctors told me that the only 2 things they have ever heard of or seen drop the number that low is Lyme and chemotherapy. I have scoured the internet trying to find something that said that they were wrong. My symptoms seem so mild compared to all of the stories that I have seen. How could I have Lyme? Best I could do, was find sites that said no one really knows what exactly the CD57 Natural Killer cell count means. Most do seem to agree that a really low score is indicative of Lyme. A level as low as 22 implies that my body has been dealing with it for a long time. The definition at the top is for a classic, acute Lyme presentation. Myself, and many around the world, do not fit this definition. Research is being done that has found many individuals with autoimmune disorders also have Lyme and that the Lyme may have contributed to the immune system dysfunction. Many experts deny that chronic Lyme exists. Now it starts to get all political…
Many of the the guidelines, testing processes and markers that the CDC and the Infectious Disease Society of America use, produce false negatives. One issue is that much more research needs to be done in the area to develop more accurate tests. Another problem is that when they tried to develop a vaccine for Lyme, they stopped recommending certain tests because anyone who had the vaccine would then test positive. When the vaccine was pulled due to side effects, those tests were not added back into the arsenal.
Some of the doctors on this side of the argument will state that Lyme only happens in Northeastern United States. Really? This one makes no sense to me….One of, if not the most common, vector born infection has managed to isolate itself to one corner of one country. One conspiracy theory is that the IDSA members on the board that decides on Lyme protocols all have some financial incentive that may effect their decisions. (patents for tests or bacteria genes)
The International Lyme and Associated Diseases Society is a group of doctors that have a different set of views both on how to diagnose and how to treat patients with Lyme and other tick born diseases. These doctors are seen as over diagnosing and over treating patients. Some of the protocols do seem really harsh and perhaps too aggressive for some patients. Most of their arguments do seem sound.
As with any group, generalizing about everyone within a group is likely not prudent.
One group will place people on antibiotics for a couple of weeks. The other group will treat from weeks to years, depending on tests and symptoms. Both groups think the other one is completely wrong. There have been LLMDs that have lost their license because of their treatment choices. Most of the posts I have seen on health boards do not mention LLMDs by name in order to protect the doctors.
All that is clear is that there are a lot of people and families suffering and politicking around medical issues helps no one. One thing I have learned through years of being in the medical field is that if there are several treatment options, then none of them are good enough.
One Antibody Test
The Western Blot test that is often used by everyone to test for Lyme has a significant percentage of false negatives. Two reasons: 1) it only tests for limited pieces of one type of bacteria and 2) it tests for antibodies. If someone has just been infected or if they have had it for so long that their immune system has stopped fighting it effectively, then they will not be producing antibodies.
Most of my symptoms can be explained by the hormones. Part of the theory behind my plan of care is that the reason my adrenal glands are so sleepy, is that they are worn out from trying to help the body fight off the Lyme (and/or any other co-infection that can come from ticks). Of course the Lyme could be getting the upper hand on my immune system because my adrenal hormones are low. Headache yet?
ENVITA-a look at autoimmune problems and Lyme
Lyme Info-prevention (link on page for other prevention sites)