9. Colour Of My Disease?

In the early days following my diagnosis with Motor Neurone Disease, I researched into the condition to gain a better understanding of what I was dealing with, and whether I could discover a way to slow down, stabilise, and possibly reverse my physical deterioration.

To date, evidence in various research studies on the underlying trigger of the disease has been circumstantial or conflicting with no definitive conclusions.

Research studies on the disease has focused on bacteria, viruses, environmental factors such as exposure to mechanical and/or electrical trauma, high levels of exercise, stress, chemical toxins including agricultural chemicals and heavy metals, genetic factors, military service, physical trauma, electromagnetic field exposure, and immune factors as possible trigger events.

I have wondered whether my MND was triggered by the 'swine' flu injection I received about 6 months prior to my diagnosis! Or could it have been a result of the infestation of 'tyrannosaurus rex' sized mosquitoes surrounding and within my workplace at the RAAF Williamtown Defence Base, and in which I had been bitten and virtually devoured on numerous occasions?

Or perhaps, could my situation be a result of the exposure to and inhalation of rocket fuel fumes from fighter jets into the air-conditioning vents within the workplace, and when strolling from one workplace building to another on the Defence Base?

Considering my diagnosis occurred within 9 months of joining the Department of Defence, and statistically people in Defence forces, and in the Port Stephens area where the Base is situated, have a greater likelihood relative to the general population in being diagnosed with MND, it is something I have pondered.

However, you reach the point, as I did, that it is an exercise in futility to ruminate on the possibilities which may have triggered my condition, and just accept and deal with the situation at hand.

As part of my research, I discovered that MND can minic neurological symptoms of Lyme Disease. Lyme disease is an infection caused by a bacteria (or spirochete) infecting humans from the bite of ticks, and possibly other types of insect biting animals including mosquitoes, fleas, sand flies, sea lice infected with the bacteria.

Known as “The Great Imitator”, Lyme Disease can imitate not only MND, but also such other diseases as Multiple Sclerosis, Parkinson’s Disease, Chronic Fatigue Syndrome, and which can affect any body organ including muscles, joints, the heart, gastro-intestinal system and the neurological system.

So the question I asked myself is could MND be Lyme Disease in disguise? To discount that theory, I sought a blood test for Lyme Disease. While many Australian doctors and specialists discount this theory, I had nothing to lose.

In pursuing this path, I discovered there are few doctors in Australia familiar with the symptoms, or understand how it can mimic other autoimmune diseases or treat the disease. And then there are other doctors and specialists who deny its existence in Australia which is unfathomable to think in this day and age.

I learned early on, that if I had any hope in beating the odds, I had to become my own doctor and take ownership of my own health and ultimately my life. It would also help me to discuss with greater authority and challenge medical practitioners, and assist in making better informed decisions.

In late 2012, about 12 months following my diagnosis, I contacted the Lyme Disease Association of Australia to seek information on practising Lyme Disease specialists. Apart from suggesting specialists, the LDAA did not recommend being tested in Australia because of its unreliability, and suggested overseas government accredited Lyme Disease testing laboratories.

As there is a lack of medical expertise in Australia on this condition, I sought a consultation from a Naturopathic Doctor in San Diego via Skype who specialises in Lyme Disease. Following my consultation, a blood test was suggested as the doctor believed my symptoms were also consistent with Lyme Disease.

I decided to take the test, and sent my blood to an overseas laboratory. If anything, it was more to discount my theory that I had Lyme Disease. A couple of weeks later the blood results came back, surprisingy returning positive for Lyme Disease (which also included associated coinfections).

Another test which offers additional confirmatory data of a diagnosis of Lyme Disease is to determine the level of the immune system's 'CD57' natural killer cells in the body which specifically target and kills Lyme Disease bacteria.

There is a view that a low CD57 reveals a severe or chronic Lyme Disease. Healthy people tend to have a CD57 count of above 200 natural killer cells per microliter of blood. My CD57 count level came in at a shocking 13, which suggests I had a severe case of Lyme Disease.

To cut a long story short, since late 2012 up to the end of 2014, I had been on multiple and aggressive antibiotic therapies, including intravenous therapy. Unfortunately, the difficulty in treating Lyme Disease is that the bacteria resides in the blood, organs, tissues, joints, and nervous system. For chronic sufferers, such as myself, it is difficult to treat.

I decided to cease the antibiotic therapy as I found no improvement, with my body continuing to deteriorate.

Subject to my health, I am now considering other alternative potential treatment options, including natural remedies, stem-cell therapy, and a treatment in Germany known as 'fever therapy', which increases the body temperature to about 40-42 degrees celsius to kill pathogens thoughout the body. There is no guarantee of success, but I will leave no stone unturned.

At the moment, in consultation with my amazing naturopath Mark Hinchey, I am trialling Propolis which is considered a medicinal marvel from the beehive. It has been found to have antiparasitic properties and a strong inhibitory effect on the Lyme spirochete. For the MND, I am also taking branch chain amino acids comprising isoleucine, valine, and leucine, as well as a probiotic, olive leaf extract, and glutathione.

Surprisingly, since commencing these remedies I am feeling more energised, less fatigued, and my speech has even improved, albeit, ever so slightly. It may not be a cure, but my quality of life is better because of it.

The truth is I do not know whether Lyme Disease and MND are one and the same thing. But it seems more than coincidental that I have been diagnosed with both within 12 months of each other. I am working under the assumption that I have both until proven otherwise. I do believe though further research should be pursued to determine any relationship between the two conditions.

But while I am breathing, I will continue to find ways to improve my physical quality of life, even if the therapies are considered cutting edge. And this is not about false hope. To me it is about not giving up on myself and my family. The gift of this life is too precious not to fight for it until your final breath.

Today, more than ever, I abide by the words of Muhammad Ali - "Don't count the days, make the days count.”