Wednesday, October 21, 2009


I'm sure you've noticed that to the right of where you are reading right now there is a list of other blogs entitiled 'My Blog List'.  The list is sorted according to the last time the blog was updated.  So if you are waiting for my lazy ass to post a new entry you can read the blogs in 'My Blog List'.  There are some interesting and compelling stories being told.  I removed a few and added a new one tonight.  Check it out!

Tuesday, October 20, 2009

Word on the Street

Word on the street is that the New Jersey Senate is proposing legislation that categorizes Lyme disease as a "Neuroendocrine Immune Disorder" (NEID). To the Lyme community this means that their disease is being classified as an autoimmune disorder. Such disorders are supposedly the result of an immune system gone awry, rather than its response to some foreign body. This position plays right into the hands of the Infectious Diseases Society of America (IDSA) which says there is no infectious agent involved in what they call "post Lyme syndrome".

The IDSA is the author of the accepted Lyme disease treatment guidelines. Unfortunately these guidelines are out of touch with the current research. The guidelines are authored by panel members who have financial interests in products involving Lyme disease testing and vaccines.  This presents a direct conflict of interest. The IDSA's denial of the existence of chronic Lyme disease results in denial of treatment to many people who are infected with Lyme disease.

I went to check out the language of the legislation proposed in the New Jersey Senate. It did not seem nearly as exclusive as I had expected. The point of the bill is to establish a research center to study diseases classified as NEIDs. These include Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, Lyme Disease, Multiple Chemical Sensitivity and other environmental illnesses. The language in the bill states that the mechanisms of transmission of NEIDs include parasite borne infection. It even mentions the extended length of time that may lapse before getting a Lyme disease diagnosis. The bill supports research to determine the etiology of these conditions.  I don't really see the harm in this legislation. You can read it here yourself.  Maybe one of the readers can explain the uproar. 

Lynette finished her IV antibiotic therapy on Friday. I took pictures. As you may recall, one of the drugs in her last cycle made her very nauseous. Lynette had a major battle with nausea through the entire cycle. Even though she had little appetite, Lynette found that she felt better with food on her stomach. While there wasn't much she wanted to eat, Lynette had cravings like a pregnant woman. Bean dip. Sushi. Steak and Cheese (hold the bread). She also developed aversions to many foods and drinks that she would normally like. She didn't even want to drink water or swallow pills. She skipped about 85% of her supplements and other prescribed medicines during this last cycle.

Today? We talked on the phone this afternoon about supper tonight.  She went to the grocery store and picked up some items for our meal.  She took chicken out of the freezer to defrost. When I got home from work she had already prepped one dish.  She chased me out of the kitchen to go change my clothes and start the grill. I love a forceful woman!

Lynette is infusing a liter of lactated ringers daily for the week following the completion of her IV antibiotic therapy. After that her PICC line will require a daily saline and heparin flush and a weekly dressing change. Due the transition of Dr. J's practice, they are not available to see Lynette until the second week in November. It is at this time that they said they could remove the PICC line.

We have enough supplies on hand to maintain the line until November 2. We are pursuing options to have the PICC line removed locally sooner. There's no way we will get up to the new JSC before we run out of supplies. We also see no reasoning for maintaining this line, considering the added risk of contamination that comes with the frequent flushes and dressing changes.

I talked to the staff at JSC and they suggested that we wait a week or so to make sure that Lynette is really feeling well. At that time they said it would be OK to have it pulled locally. I also talked to Lynette's PCP and they said they could get us an appointment to have it pulled.

Thursday, October 1, 2009

The Big News From North Carolina

State officials in North Carolina are now saying that Lyme disease can be contracted in North Carolina.  The conclusion comes from four cases of Lyme infected patients who never left their home counties. Here's a great article in today's Raleigh News and Observer about the change in policy.

This is definitely a step in the right direction.  However this news has managed to boil up a lot of anger in me.  Why has it taken this long?  The  population of our state is approaching 10,000,000.  The CDC has collected reports of North Carolina residents being infected with Lyme disease.  While the numbers are low, it is estimated that the CDC is missing as many as 80% or 90% of actual cases.  How can all of these people test positive for Lyme disease if there are no ticks carrying Lyme disease in our state? 

The wife of a man that I work with was going down the path of  a breast cancer diagnosis.  Her tests were negative and she recalled a recent tick attachment.  Her doctor tested her for Lyme disease and she was positive.  She was bitten in North Carolina.  A woman that I know who lives in Kernersville was bitten several years ago near her home.  She was treated with a short course of antibiotics and was well for a few years before symptoms returned.  She was bitten in North Carolina.  This same woman was braiding her daughter's hair and saw an embedded tick in her daughter's scalp.  A bullseye rash developed at the site of the bite.  The child had also been bitten near her home in NORTH CAROLINA.

The Department of Defense did a study of ticks removed from service members at various military installations mostly in the Eastern United States.  The ticks were tested for Lyme disease.  The highest rate of tick infection was at the Marine base Camp Lejuene.  Camp Lejeune is in North Carolina.  

One of the justifications that officials sight in denying that Lyme exists in our state, refers to a study done in Georgia that analyzed ticks found on reptiles.  In the case of one species of lizard, it was found that there was an enzyme in the lizard which was effective at cleansing their bloodstream of the Lyme bacteria.  Supposedly this eliminated the risk of infection for humans.  However, another study done in South Carolina found that another lizard species, that had ticks attached, had a 50% infection rate with borrelia.

One of the reasons that a Lyme diagnosis is often dismissed is that the tests are so innaccurate.  Unfortunately many Lyme infected patients test negative with the current tests.  Doctors in North Carolina see these negative tests as an absolute negative.  Lyme tests don't test for the presence of the Lyme bacteria.  They test for your body's response to it's presence.  The Lyme bacteria employs several tactics to evade the immune system.  This minimizes the body's immune response.  This article is the most concise one that I've found that talks about the various evasive tactics of borrelia.

Tom Grier is a Lyme patient with an education in microbology.  Although he addresses very scientific information, he has a way of writing about it that is more accessible to the layman.  For a little more detail of some of Lyme's evasive tactics as well as more indepth information about Lyme disease that bucks IDSA ideology, check it this great article.

I'm hoping that this news will change the ways of physicians like Dr. Robert Kelly of Maplewood Family Practice in Winston-Salem and Dr. Melanie Adams of Forsyth Pediatrics in Winston-Salem and Dr. Michael Blocker in Burlington. Dr.  Kelly saw Lynette and was sure that Lyme is not an issue in North Carolina.  Dr. Adams and Dr. Blocker were both aware of Anna's positive Lyme test and dismissed it.  Dr. Adams was glad that we don't have to worry about Lyme in North Carolina.

There is still a lot of pushback from the IDSA.  They are the ones responsible for the heavy handed tactics that enforce doctor's denials of Lyme and it's chronic form.  There is no doubt that the IDSA is behind the effort to shutdown doctors who treat Lyme aggressively including Dr. Joseph Burrascano in NY, Dr. Ernie Murakami in British Columbia, and Dr.Joseph Jemsek in South Carolina, who is in the process of relocating his practice for the second time in 3 years.  We have a long way to go. But we are moving in the right direction.