Showing posts with label Alzheimer. Show all posts
Showing posts with label Alzheimer. Show all posts

Monday, August 3, 2009

Lyme Brain Fog - 9mth Neurologist Wait

POOR CONCENTRATION, MEMORY LOSS, VERTIGO, LANGUAGE LOSS, DISASSOCIATION,TENDER SCALP, VISION DISTURBANCES, NERVE ABNORMALITIES, DIFFICULTY MULTITASKING, COMPREHENSION ISSUES, MIGRAINES, EYE PAIN, LIGHT & SOUND SENSITIVITIES...

AFTER raising my neurological concerns with two specialists, I finally persisted with my GP for a referral to have an initial appointment with a visiting Neurologist, who's first appointment available is in April 2010! Obviously I will try and get a referral for a City based appointment, that may shave a little wait off our first introduction. It seams clear that if I have enough brain function to know something is wrong, then obviously something isn't wrong enough. Sorry but my experiences with Australia's health care has been a whole lot of bad mixed with a small portion of good.

A Lyme Patient's Brain:BEFORE ..............................2YRS AFTER TREATMENT

LYME HEARING 30 JULY 2009:

8:30 a.m. ET --CALDA CEO Lorraine Johnson showed her own SPECT scans, showing major changes in her brain before and after long term antibiotic therapy. She presented results of CALDA's survey of 3,000 Lyme patients, indicating that more than half of respondants remained ill under the IDSA guidelines. Of those, more than 60% improved with additional treatment. She compared Lyme treatment (per IDSA--no options in treatment) with cancer and other diseases which allow for a wide variety of treatment options. Several panel members asked her questions, which allowed her more time to discuss insurance denials."


Quoted from: http://www.lymedisease.org/news/idsa_lyme_hearing/156.html Bottom SPECT pics from: http://www.idsociety.org/WorkArea/showcontent.aspx?id=15058

Thursday, July 23, 2009

1 in 100 Australians Autistic with up to 90% Lyme Induced


'ONE IN 100'

Professor Margot Prior says a second independent study from the university [Australia's La Trobe University] found the figure was close to one in 100.

"Well we had 19 autistic children in a sample of 1,900. So that's one in a 100. So again, we believe that the prevalence is certainly greater for whatever reason," she said.

"And of course this is a population, you know, a non-clinical sample, just from the population out there. "

It is still unclear whether there are more cases of autism or whether doctors are just more aware of the condition and likely to pick it up.

While a large study in the United States is looking at possible triggers in the environment, Dr Dissanayake says it is too early to tell what is behind the increase."

http://www.abc.net.au/news/stories/2009/07/23/2634744.htm?section=justin

Lyme Disease is being touted as a primary cause of autism (purportedly 90% of children with autism are infected with Lyme Disease). I am amazed by this one because I did not know that Lyme Disease was that widespread and did not know that data had been kept correlating LD in some way with Autism. Meanhwile there is actually a Lyme Induced Autism Foundation which has been formed by parents and they are hosting a physician's think tank session January 26-28 in San Diego. Lyme Induced Autism?...Currently, several doctors have stepped forward talking about this. Dr. Warren Levin of Vienna, VA recently appeared on the online radio show on www.autismone.com hosted by Duncan called "The Lyme-Autism Connection". He stated that of the 10 children with autism he tested for Lyme disease, 100% of them also came back positive for Lyme disease."
For further information on Lyme Induced Autism go to http://www.lymeinducedautism.com

http://stanford.wellsphere.com/autism-autism-spectrum-article/lyme-disease-induced-autism/335624

Autism Graph from http://media.sacbee.com/smedia/2009/06/27/22/165-7W28AUTISM.xlgraphic.prod_affiliate.4.gif

Saturday, July 11, 2009

2 Million USA Lyme cases per year (CDC reports only 20,000) World wide epidemic...but not in Australia???

When Brian Fallon did a study at Columbia University, which was just done. I forget the exact number, but it was something like he screened through 3700 people to get 37 positive (CDC positive) IGG. Now the number that you see from the CDC is a 10 times difference, like 20 000 is really 200,000. That’s not true according to Brian’s study, it’s 100 times.

IT'S ACTUALLY 2 MILLION PEOPLE PER YEAR THAT ARE GETTING THIS DISEASE."

Stated Dr Richard Horowitz, who presented on the "Under Our Skin" Panel Discussion on 27 April 2008, as part of the Tribeca Film Festival behind the screen series viewed from:

http://www.tribecafilm.com/news-features/features/Watch_Under_Our_Skin_Panel.html

Richard Horowitz, MD {Vice President ILADS}
Information on his background was found at: http://www.ilads.org/about_ILADS/officers_directors.html

"Dr Richard Horowitz is President of the International Lyme and Associated Diseases Educational Foundation (ILADEF), and he is a founding board member of ILADS. He is a board certified internist and medical director of the Hudson Valley Healing Arts Center in Hyde Park, N.Y., an integrative medical center which specializes in the treatment of Chronic Lyme Disease and other tick-borne disorders. He has treated over 11,000 Chronic Lyme patients in the last 20 years, and has published on the role of co-infections and toxins in Chronic Lyme Borreliosis. He was awarded the Humanitarian of the Year award by the Turn the Corner Foundation for his dedication and research in the treatment of Lyme Disease."

Paralysis Tick Distribution map: http://www.tickalert.org.au/distribu.htm#Geographic

Friday, July 10, 2009

11 Years with Lyme Disease acquired from Australia


Borrelia pics http://microbewiki.kenyon.edu/index.php/Borrelia#Phages.

ELEVEN YEARS have now past since a tick bite in the AUSTRALIAN tropics left me in poor health along with a classic bulls-eye rash internationally indicative of Lyme disease. However the Australian medical community failed to put the pieces together and I was deemed cause and cure unknown, listed as autoimmune, then legally disabled by my 21st Birthday. To mark this my 11th year on the lonely trail of chronic illness and newly learned misdiagnosis, I avow my current understanding of Lyme Diseases which I have been intensely researching for the last 3 months since learning the cause of my infliction.

“Lyme” which is the common term for a Borrellia spirochete bacterial infection, was named after a town in Connecticut in north-eastern USA. This is where a strange arthritis was noted to have inflicted the community during the 70’s. It was found that a number of ticks in the area were infected with this spiral shaped bacteria as frequently depicted, which is a slower replicating cousin of Syphilis, and also resembled African relapsing fever.

In 1982 Willy Burgdorfer, identified one strain of Lyme, it was named Borrellia burgdorferi after his discovery. Since then over 300 species is known word wide, however only 10 species or so have testing much of which is unreliable and more sensitive testing is very expensive. Because the bacteria changes form and is especially capable from hiding from the immune system, it is not unknown for some people who have tested negative on 10 Lyme tests to then show positive.

Mosquitoes, biting flies and various tick species (and other arthropods) have been documented to carry Lyme bacteria (and others disease causing organisms) and likely carry a role in disease transmission to hosts. It is difficult for some labs to culture the bacteria; however an article dated 19 May 2009 titled “UNF professor works to unlock Lyme disease’s mysteries” discusses Prof Kerry Clark from North Florida’s recent techniques used to demonstrate positive Lyme results from previously negative specimens.

Migratory birds, lizards, mammals including humans are some of many animals host this disease life cycle. Some are carriers with no symptoms which is concerning for imported stock into Australia including Deer and Texas Longhorn bullock. The longhorn was notorious in the southern states of USA for infecting other cattle and other animals with Master’s Disease also known as Southern Tick Associated Rash Infection (STARI) in the area and there was even stock route restrictions applied to Texas to try and curve the Lonestar Tick invasion.

Ed Master’s the discoverer fought hard to get Masters Disease/STARI a Borrellia spirochete to also be recognised a new Lyme species (Borrellia lonstarii) to bring to light the magnitude of the epidemic prior to his sad passing away last month. In Feb 2009, an article “Discovery of new Lyme strains invalidates current tests” from http://underourskin.com/blog/?p=127

Benjamin Luft, M.D., Professor of Medicine at Stony Brook University Medical Center, discovered that four highly virulent mutations of Borrelia burgdorferi, the spirochete that causes Lyme disease, may account for the alarming increase in cases for the past 20 years. Luft’s investigation and findings were initially reported in Emerging Infectious Diseases.

This genetic drift of the organism could explain why current Lyme disease tests, which were defined nearly two decades ago, are missing approximately 75% of the confirmed positive Lyme cases, according to a recent Johns Hopkins study.
Pam Weintraub, author of “Cure Unknown: Inside the Lyme Epidemic,” recently interviewed Luft for the Psychology Today website about his findings:

“What we will find,” says Ben Luft of Stony Brook, “are proteins we never tested for on our ELISAs and Western blots—proteins we were never even aware of. But they will be the critical markers for invasive, infectious Lyme disease. Perhaps people who test negative on the old tests will become positive when we look for the right markers.”


Some viruses including “Sindbis” (which I tested positive for) and also stress from migration has been shown to reactivated Lyme bacteria in many birds that also carry ticks including the Lonestar species. Hosts infected with any of the Borrellia spirochete bacteria have the potential to have their blood, brain, central nervous system and all bodily tissues invaded, just as Syphilis has been documented as being as accomplished in.

Is Lyme also sexually transmitted? This is yet to be determined. There is evidence of Lyme surviving blood transfusion processes, and organ transplants. Lyme has been documented to have been passed congenitally in-utero and via breast-milk from mother to child and has caused foetal death. There is a strong disposition for autoimmune mothers to have children within the autistic spectrum. There are also many cases of autism recovery from long term antibiotic protocols, suggesting a possible infectious causal link to many syndromes, such as autoimmune or degenerative disorders including Alzheimer’s Disease. Many trailing Antibiotics have seen improvement in conditions recently.

The bacteria morphs between spiral form (that can cloak itself with your own proteins or create ones that mimic it which may lead to a state of autoimmunity in the body) to an cell wall free state known as L-form (which invades cells) and also a cyst form which continues to replicate while laying dormant.

Cysts around throughout the body as a defence mechanism and have been found in hostile environments such as human saliva. In animal studies, cyst forms have been demonstrated to convert back into spirochetal form when serum favourable to the bacteria was added.

Tick-less transmission has been document in controlled mouse studies, where infection has crossed to non infected mice, though this could have had numerous pathways such as urine, blood, saliva or sexually.

Mice studies have also been conducted where alziemer’s plaques were induced by infecting the mice with borrellia spirochete. There are some pretty convincing scientific studies if you google “lyme alziemer’s disease” that demonstrating the correlation, if you can handle the jargon.

Australia apparently is not an endemic region for Lyme Disease or it’s carrier the American Lonestar tick. Well, I came across a travellers log from Western Australia where the writer documented and photographed a ‘bush tick’ in the area and commented lucky there’s no Lyme in Australia. This drew my attention as it looked identical to the lonestar tick I had been researching about. Not the one with the well known star on its back, but the male version.

Just because there is inadequate vector surveillance, lack of research, and poor laboratory testing procedures, doesn’t mean that it is not a widespread unidentified problem in Australia, just as it is worldwide. It has higher infection rate and severity of disease than AIDS and there is no excuse why there should not be an equally high level of government funding allocated for research and public education for Lyme or as our Health Department calls it “Lyme-Like”.

The Lyme documentary "UNDER OUR SKIN" recently commenced Cinema screenings in America. I would highly recommend gaining access to this video when available.

Saturday, July 4, 2009

My Lyme Symptoms - Stage III (Dec 01 – Apr 09)

This photo depicts how my hands looked for around a year before presenting to my initial Rheumatologist appointment in Dec 2001. More blood tests were ordered by my Rheumatologist and presumed MCTD. Brutal introduction to chronic disease and treating symptoms, and to adjust to the fact as there is no cure. Prednisone 10mg and Plaquenil 400mg a day was to commence during my next appointment, 2 months later, and I was informed to avoid sunlight and come back the following month.

I noticed rapid deterioration of my skin at that time. It turned thin and translucent, it aged really fast. I would scar badly as it now took my body a lot longer to respond to injury and to commence healing. If I burnt my hand, it wouldn’t blister for 3 days, and then it would take a month to heal. My joints inflammation increased again and I increased my prednisone to 15mg a day.

I noticed an increase in little red blisters I would get on my arms mainly and then got a terrible case of shingles on my right arm radiating from my back to my 3 small fingers, due to the steroids. I now know blister increase means to low immune system and monitor myself better. For the six weeks I had shingles followed by 12 months of unbearable post neuelgia. Tramadol was the best to give relief at the time and I continue to use this a day or two almost monthly when I have bad symptoms and pain that I cannot sleep. Neurontin helped though my CK jumped to 1000 which is toxic to my liver so I ceased that drug. When I was on it I had strange black-head like / hair follicle king of skin eruptions, mainly where I had scars from my shingles. I don’t know what that was about possibly dead nerves or toxin accumulation or simply natural exfoliation after 6 weeks painting sores with a pink lotion (?camomile). I was then given low dose antidepressants were given to aid sleep during pain. The nerve sensitivity lessened, and is now generally tolerable when it gets irritated.

My jaw involvement flared up on one occasion where I was frequently yawning from tiredness. The first time it took me 10 hours to fix a painful off centred jaw. Then later in the day I instinctively yawned again and ditto. It only took 1 hour that time, and the next 10minutes. My jaw was obviously very tender and now was giving me sharp stabbing nerve pain intermittently. The dentist took several x-rays and revealed my wisdom teeth were stuck behind my back teeth with the small roots growing in the nerves. Given my risk of infection in my current medical situation, it was preferable to wait and see if they remained stuck and to only have the surgery if absolutely necessary.

On occasion I had irritated eyes, conjunctivitis, inflammation and also. At one point approx 2003 I had a lump under the centre of one top eyelid like a cyst, placing pressure on my eye and affecting vision temporarily. That I eventually cleared up and then on other occasions I would get infected eyelash follicles, which I needed to clean with ‘J&J baby shampoo’ or medicated eye drops. My eyes get dry and annoyed easily so I try to only use the likes of clean wet ear buds or separate tissues for use around the area. Around 2004 I again noticed vision issues. I was seeing double vision 10-20m away. It was minor and I only noticed it on occasion. An optometrist said glasses were not required at the time.

I felt I wasn’t really managed well for a couple of years and sort out a new Rheumatologist despite the travel involved. I suspected I may have had infectious arthritis possible a mycoplasma infection, not purely Rheumatoid Arthritis. This was due to the fact that apart from symmetrical anthrelgia I also continued to have unsymmetrical inflammation and joint dislocations. My new Rheumatologist gathered my history and conducted further testing including baseline x-rays to check for erosion and bone density tests. There was concern as I had been on prednisone for a few years by this stage which wasn’t very good. I was interested in long-term antibiotic protocol which had some positive results in RA patients.

My new specialist understood my position, however wanted to try in addition to continuing plaquenil, the chemotheraputic drug Methotrexate in low weekly doses (followed by folic acid supplement). This reduces the inflammation response, rather than the steroid treatment which just processes the existing inflammation and can lead to osteoporosis. This was tolerated enough to wean off the corticosteroids over the next 2-3 year period, however over time the current treatment has had discomforting side effects including ulcers and digestive issues.

My overall inflammation has been better managed since this treatment regiment; however I have noted development of skin spots and increased neurological symptoms over the last 2 or so years. There could be several explanations for this, including the chemo-brain effect as it is referred to, or neuro-borreliosis or Lyme in the brain continuing to progress due to the limited drug crossover due to the blood brain barrier despite the rest of body treatment. I also noted increased vision deterioration since late 2007. On one occasion, if felt like my optic nerve was inflamed and/or spamming and all I could see was blur for over 30 minute on work day. I had been quite stressed at the time and this really scared me.

I finally ceased prednisone in late 2008, and had an especially hard year with night tremors and withdrawal symptoms increasing exponentially, and peaking 1 month after my last dose. For 1 week solid I had vivid nightmares or negative dreams, and would wake with tightly clenched hands and muscle spasms. Then it reduced to every 2nd night for a couple of weeks, then every third and decreased over several months.

Since April 2009 my eyes have been very irritable with increased light sensitivity, dryness, swelling and distance vision problems or with extended reading. I also started to have facial twitching at times. My left upper eyelid and my lower right eyelid have been twitching when I have been quite tired. It is very noticeable to me; however in the mirror it doesn’t seem so obvious. Interestingly enough, this is where I had cysts on my eyelids in the past. It seams that I could stop the left upper eyelid twitching by pressing a certain spot on my forehead. It is also interesting that I have a large 3-4mm diam red skin spot I have had for a few years on this exact location.

Photo of Acrodermatitis Chronica Atrophicans from:
http://www.aerztlichepraxis.de/rw_4_Fortbildung_Themen2007_Thema4_Borreliose.htm

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 http://dermatlas.med.jhmi.edu/derm/

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): http://www.biology.arizona.edu/immunology/cs/cs_2/01ac.html

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.