Thursday, June 18, 2009

My Lyme Symptoms - Stage II (Feb 01 – Dec 01)

About a year I had noticed increasingly achy joints. Started in my toes, then hands, wrists, then one day I couldn’t squat anymore. I had yelped out in pain at work because my knee hurt so much. I tried joint supplements MSM and glucosamine and Omega-3 when required which helped a little. I had sunstroke around Feb 01, after getting carried away fishing and forgetting my fair skin. I had such fever/chills for a few days.

I developed a multiple little rashes on my torso, most on my left side of my chest. 10 or more red spreading squished rings that looked a little pointy. A few 3-5cms diameter others smaller versions of varying sizes. They looked like the photo seen here. Suspecting ringworm I had scrapings sent away for testing but nothing was cultured. I was sent of with a cryptic diagnosis which meant something like red round rash, and put essentially some ointment used in acne treatment as a chemical peel. It resolved after a while. Under stress my voice got pitchy like I had a cold and I had what was described as connective tissue issues. I went to a naturopath for iridology test. I was given a deep tissue and therapeutic massage to detoxify at the time.

In March 01, I became violently ill. High fevers & chills, did not want to eat, felt like dying at the time. I couldn’t keep much down; I had some herbal supplements given to me at the time, and raw garlic etc. I had never been so sick before. I lost 10 kg in a week. A week went past and I was not recovering so I managed to get myself out of bed and saw a doctor, and was told ‘I don’t know what you had, but now you have pneumonia’, and I was put on some antibiotics which resolved it at the time. For months after that, I was pale and couldn’t walk up stairs without almost passing out.

I managed to put 5/10kg back on and I got well enough to get back into life in general again, though I would get sore hands from cleaning and sore feet from standing for hours working at the time. I was having difficult concentrating on my study – it just wouldn’t sink in and I got tired easily. Sept/October 01 was a stressful time for me and during this time I also received another massage, and I was quite exhausted again.

In November 01 I became very ill again. It was much like the first time, although I was already quite slim since last time. I lost over 5kg this time within a week, and I became extremely weak. My fever was very high and I was experiencing musical hallucinations and vivid dreams. Because I couldn’t work or study, I had no income support and drove to the shop to pawn a possession to buy some vitamins, over the counter meds and basic food. I recall compelled to lie down for a while in the back of my car in the tropical sun out of necessity. I could have passed out from heat exhaustion and no one would have even known. I was so out of it I didn’t really comprehend how sick I was at the time. I went to see my boss to show her I was truly sick, and she made me go see a doctor there and then. As I had over an hour before the Dr appointment I went to see my family while in the area and let them know I was sick, and how I was a bit shock up as I almost got hit by a truck driving through a red light earlier that day. I went and saw that dodgy doc who examined me all of 10 minutes said (listening to my chest) ‘hmmm…you should really see a doctor about that’, and sent me off and told me I didn’t need anything more than I had from over the counter. I crawled back into my bed in despair.

First thing the next morning my Dad and family were on my doorstep telling me I needed to ‘come home’ to get better. After a little um and ahhing, but to buggered to fight I got into the car. I was fed grated apple, and other nutritious food that I could keep down, chicken soup etc. Because of my fever I was told not to shower or get my hair wet or I may get sicker at the time. A doctor my Step-mum housekept for, came by and took one look at me and said she was getting me admitted to hospital. At the time she told my Dad I had about 6 days left on me, though he only told me this year.

I was checked into hospital, and initial tests run and IV fluids etc. I had abnormal heart rate observed. Various basic pain meds were administered at times, and suspicious of rheumatic fever I was given a dose of IV penicillin V with oral version following. This helped a lot and my digestion system started to return to some kind of normal, and I was eating ok again and sent home with a heart ultrasound and rheumatology (RH factor 210) appointment booked for 6 weeks later. When I got home the next morning I had a severe migraine. I thought maybe I was allergic to penicillin, though I had not been as a child. I kept on the orals as it went away (I now believe that may have been a herx from the IV antibiotic given a couple of days earlier). I couldn’t string a sentence together I had to gasp for air. It was like I couldn’t get enough air.

My sister a nurse in Sydney told me to come down and she would get me checked out at the hospitals there. I saw a good doctor there who arranged a heart ultrasound the next day as it was highly concerning that had not been conducted yet, and swag of blood tests etc. My B12 level was near the floor. Injections ordered. My iron was low, FeFol to take. Rheumatoid factor (179) was very high, and my inflammation markers were high. My ANA was >2560 which is +++very high. I was kept on oral penicillin V.

Saw infectious disease clinic who were very intrigued by my seemingly unrelated symptoms. Sinovitis in hands, and arthitis, heart issues, breathing, rash. Checked for Ross river and its cousins, Sindbis IgG 0.8 (<0.9) so borderline and Sindbis IgM was POSITIVE. This was never followed up though and at the time I did not understand the blood test reports. My heart rate was 140 at rest and 160+ if I walked up a staircase. Autoimmune Mixed Connective Tissue Disease (MCTD) was suggested as a diagnosis at the time, however I was due to see my initial Rheumatologist appointment.

Lyme Disseminated Rash Image(right) from

Saturday, June 13, 2009

My Lyme Symptoms - Stage I (July 98 – Feb 01)

On reflection, I presented with many indicators that suggested localised Borrelia spirochete infection in by body, however due to a lack of knowledge, the clues were never put together. Some things were classic diagnostic signs; other may have had other causes or simply part of my innate personality. Having been so young and still defining myself as an individual, I didn’t really have much of a baseline for myself or others to compare against. This is where my journey commenced with Lyme disease.

I was exhausted and had flu like symptoms, with high fever and swollen neck glands. It was assumed at the time I had glandular fever, as I was told it was known as the kissing disease and is common in teenagers. I got a lot of bed rest during this time I recall seeing an increase in frequency of floaters in my vision as it had intrigued me trying to keep them in my focus at the time (I didn’t have much better to do). It was the first time I believe I knew what a migraine was. I had headaches in the past but this was very different. I was sensitive to light also. Flashing lights annoyed me and glare made me sneeze.

I had been bitten by tiny black ticks while camping, and recall a vivid dream I experienced at the time. Within a week or so I developed a ring like rash comparable to this photograph near my shoulder blade, which spread outwards until after about a month it was a 25cm diameter bulls-eye rash as seen in my last post. I assumed it was a giant ring worm I had contracted as I had been cascading down Broadwater Creek in Townsville region on a li-low and had been completely saturated for most parts of 3 days in a Sub tropical rainforest environment. I used a lot of topical ring worm ointments, even tried apple-cider vinegar, before I possibly (uncertain and so far unable to get my records) saw a doctor and had a course of antibiotics. I refused to exacerbate it by rubbing the rash and it resolved.

I recall minor limb jerking at times occasionally jolting me awake. I noticed hair loss in my brush which I had not seen before. I had jaw pain I kept telling people it felt like I was getting my wisdom teeth, but it was dismissed as I was only 16. At times I had both a sore knee and a sore shoulder. I was active in volleyball and assumed it was an injury and I used supportive simple aids to help at the time. I had skin manifestations I would pick at, and also sores that took along time to heal. I remember having what could be described as a bladder infection and someone told me to eat cranberries. I also found I needed to eat during class and would sneak food especially sugary food to stay focused. I had a diabetes test on one occasion however it was fine at the time.

I had stabling heart pains and palpitations I recall lying in bed wondering if this was heart attack symptoms, but dismissed the idea as I was only 16. I had some numbness and tingling at times if I stayed in any position for too long. I recall experiencing what I had heard people describe as subtle ringing in the ears. I developed car sickness when I travelled especially in a closed air-conditioned car that smelt new. I recall controlling it using pressure point in the skin area between thumb and pointer finger, and by winding the window down (despite annoying some people) to deal with my sensitivity to intense smell from new car interiors. I had increasingly painful intermittent menstrual cramping. I thought maybe one of my ovaries was inflamed. I was introduced to Ibuprofen and naproxen sodium and helpful postures.

I recall depression; I was lying outside under the stars and wept for a long time. I remember being confused and telling myself I should be happy given my life at the time. I had mood swings and irritability, but one would say what teenager doesn’t. I had over reactions of emotions. I started to cry during heartfelt arguments.

I used to love maths and science. I recall being so proud at testing as a yr 11 standard during year 8. Suddenly I couldn’t concentrate like I used to, it took me along time to study and comprehend the topic, and I never got to finish exam papers in time. It’s not because I wasn’t interested, I would sit in my lunch hours with my Physics and Maths texts as I was failing, I managed to bring my grades up a level it took a lot of effort but I still failed Math C and Physics. I managed to pass Math B on my senior certificate which was required for my university entrance application.

I had a lot of stress around Aug/Sept 98 due to a change in parental custody. It was a major life adjustment and I recall losing around 3-5kg at this time, yet I was eating a lot of food, and had always had a stable body weight previously. University was exciting however hard for me as I believe I had symptoms of chronic fatigue syndrome and talked to my sister about it when I would come home from Year 12 and have to sleep. My uni text books would put me to sleep, even one lecture did. Study, sleep, eat, and work. I had moved out of home by mid 2000 with my boyfriend by this time and burning the candle at both ends (very poor diet) exhausted me until my body’s immune system crashed early 2001.

Lyme rash photo (left):

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.