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.


  1. Oh, wonderful!! I'm so grateful to hear your family's good news! I've been following her journey with IV, and hoping for the very best. May this be the beginning of an amazing ending to her ordeal. Healing from this disease is a process, and she's made some progress to be proud of. ((Hugs)) from a fellow Lymie. ~ molly

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