Tuesday, November 12, 2013

Part Fifteen: Living with Chronic Lyme Disease: a long and difficult journey

Part Fifteen: The Marshall Protocol,  My Present Very Long Term Treatment

After experiencing three recurrences of symptoms following three five-to-eight- month treatments of antibiotics, anti-malarial medications or anti-TB medications to kill off lyme and its common co-infections, I am now in a very long term treatment regimen called the Marshall Protocol. It is an "out-of-the-mainstream" treatment that is monitored, in my case, by a Lyme-literate doctor. I am also connected to an on-line study-site support group connected with this protocol and the research doctor that is heading the research for this new and progressive, but not widely accepted, treatment of inflammatory sorts of chronic diseases, referred to as TH1 illnesses.
Although the Marshall Protocol is too involved to cover in this brief blog, at the heart of this protocol is the belief that chronic inflammatory illnesses are caused by infections of various sorts. It is Dr. Trevor Marshall's belief that these illnesses have mutated into a sort of bacterial soup within our systems that go on to dys-regulate Vitamin D, which is both ingested as well as manufactured within our bodies in response to sunlight. It is theorized that this Vitamin D dys-regulation shuts down the immune system’s ability to fight off infection. By reducing Vitamin D through diet, light exposure and medication, the immune system is reactivated and with the help of low-dose, pulsated antibiotics the body is able to then kill off these mutated bacteria and restore health.

It is a slow and hard treatment that is marked by Jarisch Herxheimer reactions that are not pleasant, but indicative that "kill off" is taking place. This "kill off" must be done very slowly lest the "kill-off" kill the patient. Most of the reactions are tolerable and my goal is to monitor my reactions and modify them with the few and specific medications deemed appropriate on this protocol.  It is actually a fairly natural kill off with little of the side effects of full-dose antibiotics, though it is believed that these low doses antibiotics effects are potentiated by eliminating Vitamin D and so the "kill-off" effects are equally as effective as full dose antibiotics.  It is not without risk and comes with no guarantees, but then that is true for any medical treatment, which is why it is said that doctors practice medicine.

It is a very involved process that I have oversimplified. I don’t profess to have expertise despite my nursing background when it comes to the biochemical processes involved in this treatment. I can read it with some understanding but retaining it, much less explaining it to another is beyond my scope. Again, I refer you to articles found by googling "The Marshall Protocol" if you are interested in learning more about it and I hope that my basic understanding of it isn't in any way misleading. My story is just that--my understanding and perception of my journey of living with Lyme Disease and is not meant to say what is right for another with this illness (or any other chronic illness for that matter).

Many in the medical world don’t consider the Marshall Protocol (MP) option a good one for various reasons.  I can only say that its long term treatment, usually lasting three to five years looked short to me, with my history.  My illness was beginning to seriously affect my brain and its ability to process, read or write.  I value all of my body, but most especially my brain. I never say "never" when it comes to what I am willing to do to support my health, providing it comes at a reasonable cost.  I have also learned throughout my illness that there are good lessons to be learned with every loss.  Still I minimize what losses I can, for I value all of me and feel the same way about those I love. There isn't a part of our bodies that is easy to do without, though I have had a chance to experience temporary losses of all sorts in the course of my illness.

My doctor thought that perhaps it was time for me to step away from what wasn't working in a sustainable way for me and I was delighted to have yet another option, though I was assured that there were yet other options should I not choose this one. My doctor felt that the Marshall Protocol offered me the best chance of potentially permanently arresting my disease process and hopefully even regain lost function.  It didn't take much for my arm to “fall off” with only a bit of a twist and I jumped at the chance to reverse what had become a clear and steady declining progression in my health.

Treatment on the Marshall Protocol  includes a healthy diet, with many restrictions.  Sugar increases inflammation and so needs to be mostly eliminated. Indiscretions, I rationalize must be allowed occasionally as part of living life, but foods fortified with Vitamin D are eliminated very strictly while on the MP as well as other foods that interfer with a body's inflammatory process.   I am certain that the next question you would ask, is can a person live without Vitamin D. If they have an inflammatory illness where it has become dys-regulated in their body? The answer is yes. While Vitamin D is important in bone health, those with a dys-regulation of Vitamin D can develop bone issues like those who lack Vitamin D. Throughout this treatment our doctors do lab work periodically to be sure that the treatment isn't cause for greater decline.

Exercise is also very important and the right amount.  Too much during treatment is not advised, and every time I have pushed myself beyond, I realize this truth! Spirituality is critical to my well-being too. It helps me keep everything in perspective . I credit prayer and God to keeping me "balanced".  My creativity is essential to my well-being as well. I would be lost without it.  It gives purpose and structure to my days, and makes me less dependent on others to feel good about myself.

The results of this protocol to date have been positive. My sleep is restful and restorative, which is huge to healing.  My aches and pains have been mostly eliminated. My thinking has largely cleared and I am able to read, write and cognitively process more quickly. I shock myself and my family with being able to remember names and words, not easily found prior to treatment.  Unfortunately, with my Herxheimer reactions, I still have much inflammation which  which causes skin lesions and muscle and joint weakness.  It is also necessary for me to rest a lot.

My reactions seem to show that their is still much "kill off" going on, and so I don't believe I have exhausted this protocol yet. I have had little to no acute illnesses while being on this protocol five years.  I still must limit my exposure to light and activity and prefer the comforts of home, where I can rest as needed.  It is my hope to get back to swimming at our local college pool to regain my strength and stamina here soon. With my family's support, my writing and sewing, I am leading a more productive life.  Do I have a ways to go? Definitely, and I continue to hope for more energy though that has improved as well. (to be continued...)

(The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering their illnesses.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)