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.
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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.)

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

Part Eleven: Treatment of Chronic Lyme Divides the Medical Community

The next part of my journey involved treatment for me and my kids. Sadly, my doctor was closing her private practice, though she said that she would have referred me to another doctor anyway, for she didn't feel she had the expertise to treat me and my children for Lyme. I had already made an appointment at a tertiary medical center with an Infectious Disease doctor, but she cautioned me NOT to do this and referred me to another holistic doctor who had much expertise in treating Lyme.

I was soon to learn that there are two different schools of thought regarding Lyme treatment.  Mainstream doctors follow the Center of Disease Control (CDC) guidelines for reporting cases of Lyme Disease to the Department of Infectious Disease.  This guideline strictly adheres to certain criteria being present in order to officially diagnose a patient with Lyme Disease and are equally as specific regarding what that treatment should entail.  These guidelines are disputed by “Lyme-literate doctors” who have found that many patients have Lyme but don’t exhibit all the characteristics thought typical of early stage Lyme.

The CDC also denies that there is such a thing as Chronic Lyme Disease, and instead believe that some patients with ongoing symptoms suffer not from an ongoing infection but have developed an autoimmune disease instead. Doctors that treat according to the CDC guidelines customarily prescribe antibiotics (usually Doxycycline) for a short time and any symptoms that persist after treatment are usually treated with palliative meds as opposed to long term antibiotics.

The other "Lyme-literate" school of thought is that ongoing symptoms of Lyme means ongoing infection.  In the Lyme world these doctors are known as “Lyme-literate” doctors.  Like veterinarians, they believe that as long as symptoms persist, antibiotic treatment is warranted to kill off the ongoing infection. They aren't simple in their assessments of patients.  They also assess the patient’s overall health as well as the functioning of their immune system, to be sure that the patient can tolerate long term antibiotic treatment. Sometimes it is necessary to make a patient healthier before starting to attack the infection, for this infection is not an easy one to kill off, especially after it has invaded many systems in the body. Unfortunately this takes very little time for this nasty beast reproduces quickly.

Lyme-literate doctors believe that in order for a patient to improve, their infection needs to be addressed. Longer antibiotic treatment, they feel will increase the chances for conquering the infection, which alone will improve the health of the patient. This is their goal. Many a patient, including myself, have been successfully treated and over time serious and debilitating symptoms have lessened or been eradicated.

It is also common knowledge that co-infections go along with Lyme Disease.  Many of these infections may make a patient equally as sick, if not more so.  When symptoms persist even after treatment, Lyme-literate doctors will test and address possible co-infections, if not done at the same time as treating Borrellia (lyme infection). (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.)

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

Part Nine: Life Continues and With It Still More Stress

You know what they say, “if you want to get a job done, find a busy person" or, in our case, persons.  Well that was us and so in 1990 we took on the care of my mother and moved her here from Colorado.   Already stretched but with much compassion for my dear mother in need, what else could we do?

My sister had issues and was unable to offer enough support, and my older brother was busy raising his children as a single parent and could only offer her a spot in the nearest senior care center, so we took her “in” and her care “on”, moving her into our house for four months while we had her house repaired and fixed to sell in Denver and then she purchased the house next door to us. Her cross-country move ensued, all facilitated by my husband’s sister, may she now be crowned with jewels in heaven for this gift to us.

I was realistic that my mother had to live very close in order for me to manage her, my own care, work part time and care for my family too. It happened and the rest is history.  It was another decision that I will never regret, though it stretched our already too stretched family even thinner and made for many wrinkles that took much time to iron out. We learned that love has its own rewards and the increase in responsibilities taught us lessons for what was yet to come.  Roles got redefined again, and we all grew to take on what we felt was important to do.

This stress was not the only one however.  My youngest daughter’s benign Pectus Excavatum took on a life of its own and indeed her pediatrician had been right!  Her development was dramatic in ways that we had not expected. Her indented breast bone grew further inward leaving her only a few inches of space between her breast bone and spine. Her heart, to keep from being crushed, moved over to accommodate the crowding in her chest. This change was caught on camp physicals from one year to the next and by our GP, who was a heart specialist as well.There are many miracles in our journey and this was one of them!

No doctor had told us about this possible complication of her “benign” Pectus and I longed for city life and the vast array of medical specialists to face this problem.  After consulting with pediatric chest surgeons in a major medical facility a couple of hours away, it was decided that there was no guarantee about the results of a very invasive surgical corrective procedure, and her doctors and us held our breath and patiently watched her continue to grow and monitored her symptoms. Fortunately the worst was past us, and her heart continued to function normally and her lung capacity was miraculously only minimally reduced. Surgery, we decided, was not the best option.

Shortly thereafter I faced my next big health issue: insomnia. My side of the bed was built up with extra egg crate foam mattresses until my side was seven inches taller than my husband’s side.  I felt like the princess and the pea, as my body hurt in all the “touch-point areas” know to fibromyalgia patients.  Pain made getting restful sleep a challenge. Sleeplessness added to my chronic fatigue and after a sleep test to document that I was, in fact, getting little deep dream sleep, an anti-snoring mouth appliance was tried.  After biting through the first appliance and getting yet another, my snoring decreased but my sleep didn't increase.

Desperately seeking to feel more rested, I decided to try a holistic sort of doctor that I had heard good things about. She was a bit "out of the mainstream" and a licensed Nutritionist and Herbalist as well. She immediately voiced her suspicions of Lyme Disease, but decided to see if a strict diet and supplements would be enough to improve my condition. Dysbiosis and gastrointestinal issues followed the many antibiotics used to treat my bladder infections, wiping out the normal bacterial flora in my gut. This was to be a diet like I had never known before.  I eliminated sugar, wheat, milk, caffeine, all additives, and sugar substitutes and any alcohol including alcohol based flavorings. She then added enzymes and supplements. This frequently meant double meal preparation, but was worth it as I felt much improved!

Life was more challenging than ever before, with so much focus on my mother, our youngest child's chest condition, as well as my issues, but we were growing in our ability to deal with the difficult.  In the middle of this our oldest daughter took her turn at the limelight and had the worst ear infection her doctor had ever seen,causing scaring that permanently damaged her hearing in that ear. (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.)