Saskatchewan – This is David’s story.
I am DaveW of Moose Jaw, Sk. I am now 50 years of age, and I have been growing progressively ill for over 20 years. Only recently have I been diagnosed with lyme (chronic late stage neuro-borreliosis), and for me I suspect it is too late for a recovery.
Acquisition and initial symptoms
I suspect I was either born with this disease, or acquired it at a very early age. In my youth I was stronger than average, but always had less than average energy endurance. I also always sensed something “not quite right”, which I now perceive was a combination of ADHD tendencies intermixed with low level chronic depression and anxiety.
At age 15, I had my first epileptic seizure, but thereafter only experienced seizures upon waking after insufficient sleep, about once every 3 to 5 years (until recently).
At age 21, I developed a herniated disc from sitting cross-legged while fixing a bicycle tire (in spite of the fact that I had always been agile and strong with no previous back problems).
At age 30, I developed my first definite clinical symptoms. I had been going to the gym regularly (and had a 42″ chest with a 31″ waist), and had an unusually healthy diet. Then I noticed unusual and unexplained levels of fatigue, followed shortly after by angioedema in the soles of my feet (subcutaneous skin lumps that felt like I had marbles in my shoes). At the time it was only known to be caused by an over-reactive immune system.
The fatigue slowly increased over the years, with an increasing number, severity and frequency of other symptoms. In a rough order of appearance; I experienced sensitivities to foods, odours and chemicals (including many vitamins), motility and IBS problems (with gastroparesis and a rashed, inflamed stomach lining), urticaria, sore spots on tongue and gums, iritis, light and unrefreshing sleep, back soreness and loss of bone density. I also experienced an inability for muscles to relax that evolved into stiffness and soreness, and then to constant pain. Physically, I am now extremely weak with stamina to be up and active measured in minutes. I also have major gastro problems (barely able to handle any foods or water without major discomfort).
It took me over ten years to realize (and admit to myself) that I was also being affected mentally. I believe that increasing anxiety was the first mental symptom I noticed. Then chronic depression, followed several years later by clinically obvious cognitive decline and memory loss, and much stronger ADHD tendencies. The neural symptoms of numbness and tingling were the most recent to develop. I have reported major symptoms only here.
In the process of disease progression, most of my personality was lost such that currently I am only a shadow or empty shell of the person I was at age 30. Spontaneous quick wit and good humour have been slowly displaced by flat emotions and the wit of a dullard. I currently fear that I am close to the edge of sanity, and am usually unable to feel joy in virtually anything.
What did I do about it?
Like most lyme patients, I saw specialist after specialist – receiving no viable explanations from any of them. I think most explained away my symptoms as “mentally based”, and conveniently dismissed me and my multi-system symptoms with a referral (or suggestion) that I see a psychiatrist.
The many tests run by various specialists confirmed that I had inflammation all over my body (indicating an over-reactive immune system), but no clue as to why. I once even cajoled a doctor into prescribing me abx treatment for helicobacter (even though I tested negative). I herxed with great fatigue for a week, and then felt better than I had ever remembered (until the abx were stopped). I reasoned then that bacteria had to be responsible, but this revelation fell on deaf medical ears (even including an infection specialist). I think lyme is fairly common here, but rarely ever diagnosed.
Over the years I also tried nearly everything alternative medicine had to offer, with equally disappointing results. Symptom progression continued at a slow but steady pace.
In more recent years, most of my medical experience has been bouncing back and forth between my GP and psychiatrist – both supportive with desire to help, but neither understanding the cause of my symptoms or treatment that I really needed.
I was virtually forced to research my own symptoms from the early stages of my disease. In July/04, my first major breakthrough came when I found the Marshall Protocol. For the first time, there was an explanation for all my symptoms. But (I believe) due to the extreme progression of my disease, progress was slow (even though herx levels were difficult to manage). I then had a seizure in July/05 that shattered my shoulder, and made my lyme symptoms much worse.
Still searching for answers (and relief), I considered for the first time the possibility of lyme/borreliosis after noticing that the symptoms of many lyme patients on the Marshall Protocol Board where remarkably similar to mine. In the fall of 2005, an IGenex test gave a positive IgM and a near positive IgG for borreliosis, followed by a positive test by Bowen labs. Lyme symptom lists that near perfectly matched my own confirmed the diagnosis. Prior to this, I had presumed that I had fibromyalgia.
I was very ready to continue abx treatment, when on Christmas day 2005, I had three additional epileptic seizures, causing unrelenting back weakness and soreness. Liver enzymes were highly elevated and potassium levels very low (with no explanation for either). Morever, my lyme symptoms were much more severe after these seizures, and I am very weak and fragile. I believe that all of my organs are weak and damaged from the years of attack by this disease. I feel pain and discomfort from all organs (except the lungs).
It is no surprise to me that my son also had obsessive compulsive disorder from a very early age, with ADHD or autistic related problems as well as higher than average levels of anxiety and depression (in spite of higher than average intellect and excellent school performance). Considering recent research on the ties between borreliosis and MS, it is also very suspicious that ten years after we separated, my first wife was diagnosed with MS (about five years ago). The incidence of MS in Saskatchewan is very high.
I am working with my doctors now (who are cooperative and receptive), to first learn about this disease, and then decide on a treatment protocol. However, I can barely handle a glass of water (or any food) without pain and discomfort, so my ability to tolerate abx or herx is virtually nil. I am trying to nurse back some strength with suggestions from patients on lyme boards, as well as other treatment guidelines and suggestions on the net. I must gain considerable strength so that I may tolerate the stronger meds (and herx reactions) inevitably required to clear this long entrenched infestation.
I fear that my body now lacks the strength to tolerate the cure, but I have told my story so that other doctors and patients (particularly in Saskatchewan) lose the false impression that lyme is a disease that they have “somewhere else”. Make no mistake, Lyme can brutally devastate YOUR life (and family) both physically and mentally, and it can kill mercilessly. It is particularly deadly when mixed with a co-infection of “ignorance”.
Because of my low and declining strength I cannot guarantee replies, but I will try to respond to any who wish to communicate. My email is: firstname.lastname@example.org