Sunday, June 7, 2009

Lyme Snapshot Revelation

I stumbled across this snapshot of a tick bite rash one recent 3am sleepless night while ‘googling’. I identified it to be a carbon copy of a large bulls-eye rash I had just over decade ago (after a 9 day survival camp in the Townsville region with tick bite exposure) as an "Erythema chronicum migrans". This I have now learned is often diagnostic of Lyme disease. Although many cases present without a rash, my initial observation was a 5-7cm diameter 1cm thick red ring near my left shoulder blade which expanded to around 25cms diameter 5-8cm thick ring with a large red centre within about a month of observation. All of my complex medical history seems to fit this, and I am researching my options and documenting my experiences to bring awareness of Lyme in Australia and to bring light to an often misdiagnosed multi-symptom systemic disease and possible undetected epidemic.

I am a 27 yr old female from Australia who has never travelled overseas. I have been diagnosed and treated for Mixed Connective Tissue Disease (MCTD) for the last 8 years a type of auto-immunity where the body’s immune system attacks itself. My current treatment for MCTD is Methotrexate and Calcium Folinate weekly and Plaquenil daily. Over the last few years I have been medically managed to the point I have sustained part-time employment in my highly time flexible role. Past treatments have included a hit of antibiotic IV Penicillin V initially which stabilised me during my 3 day hospital vacation. The day or so of IV was followed by a few months of oral Penicillin V and then prednisone & plaquenil regiment after diagnosis of. Also some other intermittent medications were taken along the way. Neurological symptoms (Memory, Nerve Twitches, Concentration, comprehension, language loss, tight voice, Mood swings/Irritability) presented have been getting more noticeable to the point I think I should have some tests of some kind. On reflection I have been partially unaware but also in denial and of these symptoms from my illness commencement.

I have just returned home to regional Queensland after medical travel to Brisbane and the Sunshine Coast to introduce myself to a new Family Practitioner who I consider to be a Lyme Literate Medical Doctor (LLMD), review with my Rheumatologist and to advise of my recent findings, and attend an autoimmune clinic to have comprehensive testing and monitoring. My LLMD had some initial serology taken to investigate Lyme and other tick infections, although informed me that some co-infection testing I had researched was not available in Australia, and alluded to the fact if I am a “Lymmie”, I may be better tested/Treated overseas. I am awaiting test results before possible skin lesion / lung biopsies and further testing.

Recently reviewing some of my medical records, I noted the numerous dismissive references along the lines of 'she thinks she has parasites, been camping and had rash - refer to talk to a psychologist' by various Doctors on those occasions. I recall being asked if I had ever travelled overseas...and I believe many test were not conducted due to my naive 'no' response. The infectious disease unit I was visiting interstate told me I had something but they didn't know what. Then later I was just told I was auto immune, and to just learn to live with it. All I could do was to follow treatment instructions to reduce my inflammation or face acute and permanent damage. My immune-suppressing treatment regime particularly corticosteroid may just be to my detriment now, having learned my complicated range of symptoms fit within the Lyme disease portfolio.

I just cannot believe 'Lyme' was never even mentioned as a possibility with the numerous Doctors and specialists I have seen over the years. A public education campaign on Lyme disease in Australia is severely overdue, and I would like to see the documentary "Under Our Skin" shown in all schools, especially as a risk mitigation strategy to ones that provide outdoor / wilderness experiences like the leadership development camp I attended when I was 16 years old and didn’t know any better because I was green to Lyme in Australia.

1 comment:

  1. Dear Oblivion,
    Hi, It's Leonie Cent here in Australia. I saw your post to the LymeMD in Germantown, Maryland USA. I am trying to find out who he is so I can contact him/her. Have you had any luck ? It's all but impossible to get help from doctors here. Thanks for your great Blog. Please contact me privately if possible at
    all the best, Leonie