It is 3 am Pacific Standard time and I am wide awake. One of my doctor calls this time of insomnia in patients as "Lyme-time". This is usually in the middle of the night when you are desperate for rest, to get through another day. Unfortunately those little critters have different plans. Lyme time is when those nasty bugs wake up and create more havoc-after a year of this, I don't need more havoc! I want to scream at them to "GET OUT", but they are great at camouflage-and besides some doctor, somewhere will state that my problems are psychological in origin. Ha! To help me get through the insomnia, I have become an avid watcher of the Television show, "House". http://www.fox.com/house/
"House" is an entertaining and well written show about a group of hospital doctors that tackle complicated diseases and discover the underlying cause of the patient's illness. Gregory House, the obnoxious infections disease doctor, is played by the British actor, Hugh Laurie. I ache for a doctor like house in the Lyme disease community. House we need you!
As an information junkie, (at least enough to make me dangerous), I have been doing research on Lyme disease. All of the research, the internet sites, the books, are somewhat contradictory. It is very confusing to get some clear answers and figure out the right treatment protocol, particularly when I have brain fog from the disease.
What is clear to me from the research is that our country has a major Lyme disease problem. The disease has developed in every state. If I look at the emails, the twitters, the phone calls I have received in the last few weeks-Lyme exists everywhere. The problem is not being taken seriously by the medical establishment. Fellow "Lymie" and successful author Amy Tann says: ""I now know what is the greatest damage that Borrelia has caused: It is ignorance." http://www.canlyme.com/amy.html
When surfing the net I found some information on Dr. Kinderleher, a New Mexico based doctor who appeared on the Today Show. http://today.msnbc.msn.com/
Based on his comments during the show, a paper was developed by Dr. Ralph Stricker, a San Francisco based Lyme specialist. http://lyme.kaiserpapers.org/drdan.html
Some stats from Dr. Kinderlehrers comments on the Today Show:
• Lyme disease is an epidemic, already the fastest growing in the US with new cases surpassing AIDS.
• The epidemic proportions of the illnesses are staggering, but are being minimized by the government and insurance industries because of financial obligations.
IF this doesn't scare you, the fact that these comments were made in 2002-should! And still the disease is largely ignored close to a decade later.
Testing for Lyme:
Let me explain a little bit about the testing procedures that diagnosis Lyme disease. Even in 2009, we are far from getting proper testing in place that addresses the many issues surrounding a LYME diagnosis.
The ELISA test. This is the least expensive and easiest to perform. This test detects the antibodies made in response to being exposed to Borrelia burgdorferi (Bb). This test misses 50% of patients later found to be positive for the disease.
The Western Blot test. This is a map of the different antibodies that the immune system makes to specific proteins that are tested, some specific to Bb and other specific to the Spirochetes. There is a disagreement regarding how the Western Blot is interpreted. The CDC developed criteria that exclude 70% of symptomatic children that had confirmed a bull's eye rash. Recently a few labs that specialized in the diagnosis of Lyme disease developed better criteria. I went to one of these labs after my initial two false negatives.
Other forms of testing include the Polymerase Chain Reaction, Lyme Blot essay, blood examination and bacterial culture. All have varying degrees of success or failure depending on what stage the disease is in. To read more on this: http://columbia-lyme.org/patients/ld_lab_test.html
Still will all these tests up to 30% of patients still have negative results!
One of the controversies surrounding treatment for Lyme is the extended length of time one is prescribed anti-biotic for treatment. The reason I am told and Lyme doctors concur, that long term antibiotic use should be considered when Lyme disease is suspected is because of the following:
• Bb divides very slowly and often has periods of dormancy during which antibiotics will not kill the bacteria.
• Bb can invade the immune system and hid within the cells.
• Bb can actually coat itself with host membranes to avoid detection by the immune system.
• Bb can also exist in three forms, Spicochetal, L-Form and Cystic form, two of which are relatively resistant to antibiotics.
INSURANCE COMPANIES DENIAL of Lyme disease is staggering. I am old enough to remember the days when insurance companies actually paid your medical bills and cared enough to not make the process work. WHAT HAPPENED? Currently, Insurance companies have adopted guidelines reflecting short term treatment approaches, which are governed by cost-containing considerations. However the legal standard of care for treating a condition is determined by the consensus for physicians who actually treat patients-not by treatment guidelines. This has not happened with Lyme disease.
One survey found that 57% of responding physicians that treated Lyme disease did so for 3 months or longer. Brian Fallon, MD and director of the Lyme and Tick borne disease center at Columbia University: http://www.columbia-lyme.org/about/director_message.html notes that for over 3400 patients screened at Columbia University study of persistent Lyme disease, the mean duration of IV treatments was 2.3 months and the mean duration of oral antibitiotics was 7.5 months. http://www.columbia-lyme.org/
Insurance companies have placed their full weight of their economic clout behind the less expensive short term protocols. The longer term options are discredited as experimental or "Not evidence Based".
I am trying to go back to sleep now, hoping for a wonderful dream. In my dream, I am finally able to get admitted and cared for in a hospital. As I lay in bed, Hugh Laurie walks into my hospital room. (Of course, you know this is a dream, since I can't find a hospital that will take a "Lymie"). He walks over to the bed, says something obnoxious, rattles off instructions to his team, and moves towards the door. Before he leaves, he actually gives me a brief smile and I thank him. I am not sure he has constipation or he actually is responding to my gratitude. Then he says, over his shoulder as he walks away. "I am always right". Perhaps he took some instruction from the American Medical Association after all.
*Special thanks to Dr. Metzger and Harmony Women's Health for providing access to their research for this blog. http://www.harmonywomenshealth.com/