Fibromyalgia, Chronic Fatigue Syndrome,
M.E, Schizophrenia, ALS (Lou Gherigs Disease), MS, Arthritis, Gulf War Syndrome
What could all these illnesses have in common?
Un-Diagnosed Chronic Lyme ??
Here's My Story.......
I was born in Canada and lived an innocent and happy life in a small farming community in Alberta, my mother ran a small general store and my father was a retired farmer. I was an only child and was fortunate to be healthy, suffering only from a mild dose of German Measles from which I made a full recovery.
I immigrated to Sydney, Australia in 1973 and during the 4 ½ years that I lived there became a State Registered Nurse.
England beckoned in l977 and shortly after arriving there I began my flying career as a stewardess for a major airline, flying long haul from London Heathrow to nearly every major city in the world. It was a tiring lifestyle but was exciting and had many rewards, shopping, visiting my friends, shopping, meeting great people every day, shopping the world was my mall and I now realise that I did have it all.
In October 1991 I visited Sydney on holiday, during this time I went to a friend’s BBQ, said friend also had a long haired Shizou dog who at one point sat briefly on my lap. I came home and went to bed, that was it!
When I woke up the next morning I felt an itchy sensation on my abdomen and gave it the proverbial scratch, my fingernail caught on something which I thought was perhaps a scab of some sort. I looked down and saw a small round dark brown thing sticking out of my skin, on closer inspection my scab had legs yikes!! The friend I was staying also a nurse gave her opinion, she thought it was a tick followed by an admission that she had never actually seen one before, but she concluded that in her opinion it did indeed look just like one!.. Hmm...not as specific as I would have liked.
I began ringing around, first to her GP who stated ‘gooday luv we do not have lyme or anything nasty in our Sydney based ticks...the nasty ones live up the in mountains’ he passed on some general tips about not dousing it in alcohol, perfume, olive oil etc and that was it, by the time we had done ALL that he suggested common sense finally prevailed when another nursing friend who worked in Casualty said.. ‘grasp it and turn it anti-clockwise there is a little corkscrew thing on the end of it’ this finally worked although the assorted poisonings probably had taken effect by now, high on alcohol, ready to be fried and smelling like Barbara Cartland’s Handbag it finally let go.
My health imperceptibly began to deteriorate, I put a lot of it down to being jet lagged as many of my co workers were complaining of similar things … and of course being in my 40’s. I redoubled my efforts to improve my diet, exercise and looked into wonder supplements, even doing a course in dietary therapy.
In l996 I discovered that I had rather large fibroids in my uterus which I thought was the architect of all my misfortunes so I thought “if I could get rid of them, I could then get rid of my persistent bladder urgency, leg pains and increasing tiredness”.
I gave myself a year to try alternatives, natural progesterone, herbs etc and ruled out a hysterectomy TOTALLY AND UNDER NO CIRCUMSTANCES (other than if the tumours were cancerous) a year came and went and my efforts to find a surgeon who would agree to only remove the tumours came to nothing, in the UK that is. So I turned to the trusty Internet and came upon Dr. Michael Toaff www.althysterectomy.org.
We exchanged e-mails and phone calls and I went to see him in Bryn Mawr just outside Philadelphia. After his examination and consultation I was convinced he was the one I could trust. His attitude was ‘they were my organs and if I wanted to preserve them then that was my right’ he even helped me draft the consent form so that it was clear that I was signing only for a myomectomy and a hysterectomy could only be done if cancer was discovered and verified by a pathologist (who would be standing by to examine the tissue samples) or that a catastrophic haemorrhage was threatening my life. With my great and ever understanding husband in tow no insurance and only enough money for the operation and a two day stay in hospital I gave myself up to the higher power that looks after us all and trusted that it would be as it should. I was not disappointed.
My faith in Dr. Toaff was rewarded, my physical recovery was nothing short of remarkable, no infection, no adhesions, discrete scar but I felt like I had been run over by a train for weeks afterwards. I must make it clear that this had NOTHING to do with Dr. Toaff’s work the healing process and reserves were down to me, not him, he did his part perfectly…
Four months went by before I felt fit enough to return to work and even then only part time, by this time I was beginning to suspect that there was something else at work here, so back I went to the Internet.
One night whilst mindlessly trawling, Chronic Fatigue and Fibromyalgia I had a defining moment and thought to myself. What is this Fibromyalgia syndrome? I began to look at the definition of it.
Fatigue, insomnia, non restorative sleep, muscle pain, interstitial cystitis, brain fog...etc. etc. The ‘light bulb’ lit up… that was it....
Fibromyalgia became my new direction it provided the explanation as to why I had no healing reserves to recover.
After several months researching and ignoring everything that suggested that the only other option was to ‘live with it’ I came upon the work being done by Dr. St. Amand using Guaifenesin, a component of many cold medications, a non prescription mucous thinning drug which was fairly cheap as well.
For nearly 4 years I did this and although it had some successes according to the chat groups it did nothing for me accept an increase in the excruciating pain that I already had.
Dr. St. Amand himself says that this is not a suitable for those with chronic infections but I did not know at this time that I had Lyme!
By now I was reading about Sick Building Syndrome and other toxicities such as metals and pesticides and after reading a book called ‘Desperation Medicine’ by Dr. Ritchie Shomaker M.D. I went to see him in Pokemoke City, Maryland about a 3 hour drive from Washington.
He originally thought that I was a candidate for Sick Building Syndrome as Airplanes are nothing more than flying sick buildings, being trapped for hours on end in a tube with recycled air full of bacteria, cleaning products, de-icing chemicals etc seemed possible causes, it was highly possible that the great flying years had taken their toll. He then asked about whether I had ever been bitten by a tick, when I said ‘yes’ he then arranged more blood to be taken and 4 weeks later he confirmed that I had indeed got Chronic Lyme.
My Journey Begins.......