Everything is connected, and we are all multifaceted beings. But as we go about our daily routine, we seldom think about it until some obstruction or jarring event comes into our lives to rattle our cages and make us look at ourselves more closely. Such is the case with chronic Lyme disease, and as I talk to more and more Lyme patients across the country, I’m finding that their experiences frequently match my own when it comes to moving through the illness to complete healing.
In 1969, author Elizabeth Kübler-Ross published her book “On Death & Dying,” and in it she presented a famous formulation of the stages of grief that dying people tend to go through as they come to terms with the realization that they will soon pass. Since the book’s publishing, her stages-of-grief system has become more popular than her book, and it is now a part of our modern cultural awareness. Her five stages include denial, anger, bargaining, depression and acceptance.
Inspired by Kübler-Ross’ work, I have begun to notice similar but different stages of consciousness, experiences and emotions for chronic Lyme patients as they move to complete healing. One of the differences in the staging system I’ve developed is that a patient can get stuck in a stage and never progress to complete healing. Conversely in the stages of grief, a patient ultimately moves through the system and reaches the final conclusion of death whether they like it or not.
Like most Lyme patients, I went for a long period of time of being sick and undergoing tests before I received a definitive diagnosis. Like most patients, I was used to trusting my traditional medical doctor because whenever I had a cold or a fever, he would prescribe some antibiotics and I would get better. As simple as that.
However, when I came in with Lyme symptoms, my doctor didn’t have a clue. He ran his usual battery of tests, but because I didn’t have cancer, diabetes or heart disease, he literally said, “Oh well. I guess we’ll just have to chalk this up to being ‘just one of those things.'”
When I pressed him further on what exactly he meant by that, he said, “Your symptoms aren’t life threatening, so maybe you can learn to live with them.”
Rocephin (ceftriaxone) is a cephalosporin antibiotic commonly used to treat many kinds of bacterial infections, including severe or life-threatening forms such as meningitis. It’s a favorite go-to antibiotic in these cases because of its well-known ability to cross the blood-brain barrier (see study). For this reason may doctors and LLMDs have been prescribing rocephin to patients suffering from neuroborreliosis or Lyme infection that has entered the brain. In these cases, rocephin is administered intravenously through injection or PICC line.
I have to admit that if someone would have told me that the key to healing was forgiveness when I had just been diagnosed with Lyme disease more than a decade ago, I probably would have bounced a bottle of doxycycline off of their head.
It was the early days of Lyme for me and I was very focused on my physical symptoms. These symptoms were unlike anything I’d ever experienced in my otherwise very healthy life prior to the diagnosis. So as soon as I received confirmation after going at least 2 years without a definitive answer, I was ready to disinfect and get the damned bugs out of me.
Doxycycline has been commonly prescribed by physicians across the world as a first-line defense in fighting Lyme disease for decades. This is mainly because there is strong evidence that patients who take a 4-6 week round of this antibiotic within the first 60 days of infection onset can remove all signs and symptoms of Lyme disease and avoid going into the chronic phase of the illness. In fact, doxycycline (along with amoxycillin, cefuroxime and azithromycin) has become a part of International Lyme and Associated Diseases Society (ILADS) treatment standards.
The problem is, a 2003 study reported by the US National Library of Medicine warns that doxycyline has been shown to cause intracranial hypertension or pressure on the brain.
Turmeric is a ginger-like root that grows in southern Asia and up until recently was more well known as a food spice that you’ve probably experienced in your local Indian restaurant. It’s what gives curry powder its yellow color.
A few years ago, turmeric made its way into public awareness when a number of scientific studies showed its positive impact on a number of symptoms that have commonly bothered chronic Lyme patients. In fact, the list of potential benefits of turmeric practically line up with some of the more bothersome symptoms that pester Lymies.
At some point during your treatment of Lyme disease you’ve probably experienced exaggerated symptoms… debilitating headaches, joint pain, fatigue, digestive problems, mood swings and brain fog, etc… or you may have some symptoms peculiar to you. At times you might try to shrug them off as part of the game in treating the illness, but on days when you’re relegated to the couch or bed, it makes you not want to treat the illness at all. What can you do?
Some thoughts on antibiotics and treating chronic Lyme… When I was first diagnosed in 2005, all I knew to treat Lyme disease with was antibiotics, so I went hard and heavy right away. After taking doxcycline orally for about a month and not noticing any positive results, I asked my naturopath for a PICC line. She refused, citing that it was too drastic and dangerous, so I went to another doctor who would do it.
During the procedure to insert it, the hospital staff unwittingly jabbed my heart with the line, and I started losing blood pressure on the table. They kept me for observation for about an hour and then I drove myself home. Later than night while asleep, I rolled over on it and I thought I was going to die when I experienced something on the level of a heart attack. I didn’t die and believe it or not, I actually got a second PICC line inserted a year later and I resorted to painful intramuscular injections of Bicillin when the PICC lines didn’t have any lasting effect. The doctors I was consulting at the time only knew of antibiotics as a Lyme treatment. When you only have a hammer in your toolbox, you tend to think the solution to every problem can be achieved through hammering a nail.
On Saturday, January 23, 2016 the Ticked Off Music Fest held its fifth event since 2013 and its first event off of the contiguous US mainland. It was hosted in a location that most people would think to be the last place where Lyme disease could appear… the island of Oahu, Hawaii.
Even in the Lyme community, Hawaii is thought to be a bit of a “safe zone” where no ticks exist and incidents of infection and Lyme patients is nil. I admit to being of this mind when I got a call in the fall of last year from two Lyme patients living on two separate islands in Hawaii, inviting us to host an event there.