My Date with Lyme disease and Morgellons disease

Welcome.

I am writing to you in the hope that you may find interest, advice or hope from my discoveries found along the road to health and wellness. There are a few weighty finds, some worth their weight in gold in fact.

First I want to go right back and tell you a little bit about my health story….

I used to ponder, for many years, whether a person could be affected by their parents state of happiness at the moment of conception. Like most of us do, I was trying to work out why I am like I am. I was plagued with some mysterious health issues for much of my adult life, and felt there must be a connection between health, and the soul. That maybe, what we experience early on in life could pave the way for how our bodies function ‘energetically’. I seem to be behaving like a vacuum for disease on an energetic level, and when I cast my mind back I realised that my problems had started way before I had reached adulthood. I asked my mother one day if she had brought me up to be overly cautious, as I can remember being incredibly anxious, even as a child. She said she had brought me up the same as my brother, who was quite the opposite, quite brash and brave like many boys are. I grew up being quite reserved, shy and isolated from other kids, my earliest memory are of my mother and grandmother being brought into nursery school to talk about the fact that I would not talk. My paintings I remember were all over the walls in the nursery, and I remember the teacher exclaiming that I was incredibly expressive with my art work but just would not speak. Around this time, during an assembly of sorts (we were only pre-school age) where we all sat around cross-legged, everyone listening intently to the teacher, everyone except for me that is. I was looking at the marvelous colours this man had around his head and shoulders, like a rainbow. I was chastised for not listening for many years to come.

I found it very difficult to join in at school. I felt anxious about almost everything but something about art I found empowering. Perhaps it was a meditative state that I reached when I was drawing, perhaps it was the praise and adoration I received for being gifted in this area. Perhaps it was the need to be able to express what I was feeling inside that I struggled with in my everyday life, that made me a creative soul.

Later on in life, after being sick for many years I trying to unravel the complex tapestry of my life to try to understand why my body was so inclined to be this way. The medical establishment had offered no clues, nor support. I for some strange reason had an impressive list of mysterious diseases that they both knew little about, and could do little to help with. Dr Do-little was my practitioner and he lived up to his name.

From a very early age I was quite ‘sickly’, often affected very much by mold. If there was mold in the house it was me that would end up instantly with a chest infection. Back then everything was considered as bacterial and I was given many courses of antibiotics for this apparent chest infection. I would visit my dad at weekends, his trade was renting holiday flats to tourists in our seaside town of Bournemouth on the South coast of England I was always put in the room that had the mold, the room that could not be rented because of this mold. He bought and sold these houses over the years and I as a consequence I was regularly exposed to mold.

I had suffered silently with an eating disorder around the age of about 11, and diagnosed with Epston Bar Virus (EBV) at the age of 14. After this point for the I suffered very intense fatigue, I could easily sleep 17 hours a go if I was allowed to. The fact that I left home at this age and had to work nights to pay my rent as well as go to school made life very hard for me. My schooling suffered and I did not receive a decent education.

As a child I think I also had bouts of candida, I had a lot of tummy ache, and I remember my Grandmother more than once applying cream to my privates when they were sore.

At the age of 18, my first love hit me with a bomb. Shortly after embarking on a physical relationship with him, I discovered what I now know to be called Morgellons Disease. This disease was given this name by Mary Letatio, the mother of a young boy who shared the same strange symptoms described in a paper called ‘A letter to a friend’, written in the mid 17th century by Sir Thomas Browne. Mary Letatio’s son was said to have had lesions on his mouth which upon close inspection had unusual fibers protruding from them. Her research lead her to the paper and she used the term Morgellons to describe what she had found. The word Morgellons was taken from the French word ‘Masquelons’ which is thought to be originally derived from the Latin ‘Muscula’; a little fly. Morgellons is indeed a strange name perhaps appropriately given to an even stranger affliction, which I will endeavor to describe further into this blog.

I was never given a diagnosis but instead realised I was risking being labelled with a mental health condition after an appointment with a dermatologist resulted in being laughed at. This lead me to realise there was very little I could do about this affliction and I buried my memories of the bizarre symptoms in the deep dark vault of my mind.

In the following years I suffered strange aches and pains in my joints, which upon numerous visits to doctors was told it was ‘growing pains’ or ‘double jointed-ness’ and by the age of about 30 I was diagnosed with Elhers Danlos Syndrome (EDS) and Fibromyalgia. I was confused, how could I have both? There was no blood test for either, rather a clinical diagnosis and no explanation as to what may have caused these ‘syndromes’. It seemed like there was a lot more going on that I wasn’t being told, but treated like a difficult patient when I asked questions. Later on after years of stomach pains, I eventually was granted an appointment with a nutritional therapist through the NHS, who diagnosed me with Irritable Bowel Syndrome (IBS), apparently caused by stress. I was advised to eat less vegetables.

This sequence of health events seemed to lay the foundations for a gradual decline in general health and well being, but to top it off I decided to put the nail in the coffin by travelling extensively around India for many years. It was never a consideration of mine or anyone’s it would seem, to ponder the possibility that a person who had received vaccinations was vulnerable to bugs, parasites and infections in a country like India, and certainly not even feasible in the UK or USA!

On my travels I was bitten by a tick, and suffered with a terrible fever until, after a whole week, when the tick was discovered and removed. I did not know what Lyme Disease was back then. I had many other horrific bouts of vomiting and diarrhea, I had not yet grasped the seriousness of these pathogens inside my body and sadly I was not to learn until almost 20 years later. My health continued to deteriorate, but at the same time as being told there was nothing could be done about my vague diagnosis’s. One day, I decided to sit myself down and once and for all find out what was making me so sick, I had the internet now! There was no excuses anymore, everything I needed to know was there for me to discover, and I embarked upon the journey of a lifetime, the journey of self healing.

Though I have not cured myself of the many pathogenic organisms and complications that follow them, but I certainly have managed through years of research and networking, to slow down the speed of my decline of health and this blog is here for those of you with similar experiences, to stand as testament that it IS possible. It is a work in progress, but with dedication and commitment, you can too recover your natural equilibrium of good health. We all need support in reaching our optimal health, but what many of us lack is the belief that we can also take our health into our own hands, take responsibility for the wonderful vehicle for the soul that have been blessed with; our very own magnificent body.

More recently I have discovered through DNA testing, that I have many genetic mutations, some of them very common in chronically sick people, people with illnesses such as Lyme disease, Morgellons disease and Biotoxin illness (also known as mold illness). Including several mutations of the MTHFR enzyme, and the dreaded mold gene; HLA (human leukocyte antigen).
The Human Genome Project, the HGP was the international, collaborative research program whose goal was the complete mapping and understanding of all the genes of human beings. Discovered that our environment actually plays a much bigger role in our disposition towards illness, despite what our genetic code may predict. In other words what we expose ourselves to, such as toxins, pollution, diet, and stress can dictate our health. This in turn means that we can be in control of our health, to a degree, by making the right choices. This is known as epigenetics.
The issue is, and one that is discussed on the many health forums I participate in is;
What came first, the genetic mutation or the illness? Could these illnesses could be causing the mutations, rather than the other way around. The jury is out. But watch this space.