The Battle Against Lyme Disease – Part Two
Chronic Lyme: An Attitude and Lifestyle Adjustment
Being diagnosed with Lyme was a life changing experience for me. Prior to the diagnosis I had major work-ups done in order to try and understand what was creating some of the very hard to understand symptoms I was experiencing such as fatigue, muscle pain and difficulty sleeping. I self-medicated/supplemented in order to help reduce symptoms and I went through a very brief time of depressive thinking, believing that it all was in my head. It was a very difficult time trying to understand the cause of my “weird” symptoms. This is a common story often echoed by my patients about their troubles.
Lyme is known as the great imitator. Symptoms vary greatly among individuals and can often mimic more severe conditions. Patients are often sent from specialist to specialist to rule out major conditions such as cancer, heart disease, auto-immune disease, rheumatoid arthritis, lupus, neuropathy, hypothyroidism, multiple sclerosis, and psychiatric disorders, among others. Patients commonly end up with no definitive diagnosis or occasionally receive a very broad umbrella diagnosis such as chronic fatigue syndrome or fibromyalgia. Unfortunately, some may be told it’s all in their head. Although it is a relief not to receive some of the major condition diagnoses above, not knowing the cause of the “weird” symptoms becomes very troubling and difficult.
After receiving a diagnosis of Lyme, the people who are most successful in treatment are those who become empowered by adhering to a very systematic regimen of due diligence and detailed tracking. Tracking and journaling become very important tools to figuring out what factors may trigger changes including prescribed protocols, food, stress, and environmental exposures. Logging and tracking symptoms and changes in lifestyle helps you and the practitioner create an effective treatment program.
Borrelia Burgdorferi: A Wolf in Sheep’s Clothing
About a year ago, when I found out I had Lyme disease, I began researching Borrelia burgdorferi (Bb), the bacteria that causes Lyme, and I was truly impressed with its capabilities. First of all, it is by far one of the most, if not the most advanced bacteria. Its capabilities are frightening and parallel attributes that you would want if you were going to war or entering another country as a spy. In essence that is exactly what this organism does when entering your body, it goes to war against the immune system.
Bb is classified as a spirochete, and is related to the organism that causes syphilis, Treponema palladium. Spirochetes have long tail like structures that extend from either end and allow them to travel in any direction within the body. These long hair like structures allow them to burrow, attach and wreak havoc in our body. Bb likes to live within collagenous material, such as the eye, brain, nervous system, joints, muscles, among others. It spends very little time in the blood. Bb very much mimics a parasite but instead of stealing your nutrition from your gastrointestinal tract it has the ability to secrete enzymes that breakdown your body’s tissue into its basic components in order to gain nutrition. All of this being quite scary or impressive, the most amazing of Bb’s abilities is evading detection from its enemy, the immune system or antibiotics/antimicrobials:
1. Shield
Research has demonstrated that Bb has the ability to shield itself from the surrounding environment within moments of detecting hostility. The cyst form of the Bb has the ability to lay dormant for months to years and reactivate when the environment becomes more compatible for survival.
2. Cloak
Bb has the ability to enter our immune cells and kill them from the inside out and then coat itself in the immune cell’s proteins in order to travel around undetected by our immune system. It is as if the Bb has put on our uniform and our immune system now sees this organism as one of our own.
3. Decoy
Bb has the ability to release some of its protein structures, called blebs that chronically activate our immune system. When the immune system comes along and sees these foreign proteins an attack is initiated. An over active immune system may attribute to the development of autoimmune disease. It is as if the Bb has painted our allies uniforms with an opposing color therefore we mistake our allies as enemies and destroy them with friendly fire.
4. Hide (biofilms or in the cell)
Bb has the ability to hide in different places in our body. It can hide within the cells themselves out of harm from detection by our immune system or deep within biofilms. Biofilms are layers of different microorganisms that are stuck together and are in a difficult-to-penetrate “slime”. These biofilms are found throughout our body, in the gastrointestinal tract, nasal mucosa, and possibly even our blood stream. It is as if our enemy is hiding in a place we would never suspect such as our backyard or attic.
Testing…How, Why and When
I feel that it is important to reiterate a section from part one of this article.
“Lyme is a clinical diagnosis supported by laboratory data.” -Dr. Charles Ray Jones MD
Read that quote very carefully, in fact re-read it. It indicates that it is first up to the physician and the patient to review signs and symptoms and then determine whether or not Lyme disease should be included in a diagnosis. This is because the conventional testing that is available right now is very limited and is unreliable.
Without a doubt it is understood that there is much to be desired when it comes to our ability to accurately, identify everyone who is infected with Bb through diagnostic testing. However, if you are concerned about whether or not you have been infected, testing is an important step. If testing reveals that you are positive then chances are you have been exposed and have an infection. The danger is when we rule out Lyme because of a negative test. Lyme is always a clinical diagnosis consisting of your history and signs and symptoms, supported by laboratory data. In other words, if the clinical diagnosis points to Lyme then treat for Lyme, even if the test is negative.
Keeping this in mind I will briefly discuss some different types of testing that you should consider if you believe you have chronic or persistent Lyme.
The CDC Criteria for a Lyme diagnosis is based on a Two-Tier testing system. First a person will have an ELISA blood test, which measures the total amount of antibodies against Bb. If positive this will be followed by a Western Blot to look for specific protein patterns or bands that are present in the immune cells. For a positive diagnosis 5 out of the 10 IgG bands that are examined must be present or 2 out of the 3 IgM bands that are tested need to be present. A downside of this two step testing criteria is that a false negative ELISA will result in no further testing and that the Western Blot excludes several bands that are known to be specific for Bb. It is unfortunate, but patients rarely meet these CDC guidelines and therefore miss or delay their treatment and continue to suffer unnecessarily. Another downside is that this testing method unfortunately cannot be utilized immediately after a bite or tick attachment because it takes time for antibodies to develop a response to the offending organism. This test could only appear positive if the immune system has had time to respond to the infection, approx. 6-8 weeks.
Recommendation – Get this test first! As long as it is performed 6-8 weeks after you think you have been infected.
The gold standard testing for detection and confirmation of Lyme is a Bb culture. This test examines whether or not it is possible to grow the Bb organism from the blood, tissue, or spinal fluid sample over a 4, 8 or 16 week cycle. This test is also limited because Bb is a slow growing organism and this test is infrequently positive after the organism has traveled outside of the blood stream and inside of the tissue. This test however does show that you have Lyme because the sample taken from your body was able to grow the Bb organism.
Recommendation – This test can be completed if you suspect an infection and have current exacerbation of symptoms. It can be completed anytime after infection.
DNA or PCR (Polymerase Chain Reaction) testing is also available. This test determines if fragments of the Bb DNA are present within the blood. This test does not indicate an active infection or immune reaction; it only indicates whether fragments of the bacteria are present in the sample taken. A limitation of this testing is that it is often found to be negative. Thoughts are this is because the Bb organism is only present in blood for a short period of time or that the genetic load needed to test positive is not present with in the blood. Either way this test is often conducted to assist in the diagnosis of Lyme.
Recommendation – I believe that this test can be an add-on to the tests listed above or it can be utilized if the tests above are negative and you still suspect Lyme.
One of the well-known labs that many Lyme literate physicians utilize is IgeneX laboratory out of California. The testing can be expensive but their labs seem to be much more successful at picking up a Lyme and co-infection diagnosis than conventional labs-www.igenex.com. Personally, I think if you can afford this testing, which can cost approximately $1,000, this is the best option.
Recommendation – If you are found negative with the CDC guidelines, ELISA and Western Blot, I believe following up with this test is the best option if you still suspect Lyme as the cause to your symptoms.
Ticks are very much like a dirty needle and can carry much more than just the Bb bacteria. Other infections referred to as co-infections, can also be present. These co-infections, Babesia, Bartonella, Anaplasma, Ehrlichia, Mycoplasma, among others are an important piece to the puzzle but echo the same problems with testing, as Lyme. Testing can examine the immune response to the specific co-infection (IgG and IgM) along with PCR testing to detect DNA fragments within the blood. Once again it is important to keep in mind that these are a clinical diagnosis supported by laboratory data.
There is much to be desired for a sensitive and specific test that accurately diagnoses Lyme disease. That being said, I support the use of the testing options and recommendations described above, as they are the most current ways we have to detect this evasive disease and support a clinical diagnosis. Personally, I am glad I was tested. I was fortunate enough to find that I met the criteria for a positive diagnosis of Lyme from CDC guidelines. Having this confirmation is helpful, but if you are struggling to find answers, do not take a negative test as the “be all and end all” and forego pursuing treatment. Often one of the best options is to pursue a treatment trial while monitoring your symptoms.
As I mentioned in Part 1: If you present with signs and symptoms, specifically an EM rash after a known bite, treatment should be started immediately and not delayed for a confirmatory test. It can even be argued that if you present with an EM rash without a known bite but live in a Lyme endemic area then treatment should be started immediately.
Part III…Sneak Peek
In the next part, I will specifically be speaking about treatment options, both natural and pharmaceutical. There are many options out there and I hope to be able to shed some light on their effectiveness and importance.
Until next time…Your Health Detective Dr. Rudy Mueller DC IFMCP
Suggested Resources
-“Healing Lyme” and “Healing Lyme Disease Coinfections” by Stephen H. Buhner
-“Why Can’t I get Better? Solving the Mystery of Lyme and Chronic Disease” by Richard I. Horowitz, MD
-“Lyme Disease and Modern Chinese Medicine” by Qingcai Zhang and Yale Zhang
-International Lyme and Associated Diseases Society 2013 Annual Conference
ELM™ | Maine
