In 1979 I was very healthy when I married my first husband. He had a peculiar rash in one armpit. It was approximately 10cms. across with a red ring around it.  I was trained in Pharmacy to diagnose rashes, but this was different. As eczema creams did not work, I thought it may be ringworm, due to the red ring around it.  We used various creams over a few weeks, but nothing worked.  

A doctor took a swab and decided it was a "nerve' rash from stress, which did not make sense to us.  However, cortisone cream fixed it.

I developed a flu-like illness and never recovered.  My doctor tested for Mononucleosis and diabetes, but the results were negative.  I continued to work in my Pharmacy job but felt extremely ill.  Then I became pregnant.

At 7 months pregnant, I had severe heart palpitations. On doctor’s advice I stopped drinking caffeine, but the palpitations continued. My daughter was low birth weight and had trouble feeding.

When she was six weeks old, I was deathly ill, had excruciating pain in my neck, head and spine, visual disturbances and insomnia.  I couldn’t tolerate lights, noise or motion.  I had severe muscle pain and weakness. 

My doctor prescribed Serapax which made me feel worse.  He was bewildered as I had symptoms everywhere.  After a few months I lost confidence in him and found another doctor. 

The new doctor helped me with diet, B12 injections and mobilized my spine which was completely spasmed up.  I became sensitive to chemicals and foods which previously never bothered me. 

When my daughter was 12 months old I became pregnant again!  My son was very low birth weight and had trouble feeding.  When he was 6 months old I miscarried
our third baby.

Over the years both children had strange symptoms. When my daughter was 9 she had  high fever, headaches, neck pain and couldn’t walk. At The Royal Children's Hospital the doctors never found a cause. The walking problem lasted 2 weeks.

By 13 she was 3 years behind in her growth, according to bone scans and x-rays.  She had joint pains in her knees and feet.

My son suffered diarrhea, behavior problems, depression, bed-wetting, breathing problems, rashes, headaches, blurred vision, muscle pain in the neck, knee joint pain, swollen wrists, swollen glands, sore throats, sensitivity to glare and learning disability.  Specialists hospitalized him, but all tests came back negative. I often wondered if we might all have some sort of bacteria.  The specialist agreed but didn’t know what it might be.

Over 22 years I was hospitalized many times but no cause for my illness was found.  I am 47, often use a walking frame and sometimes a wheelchair.  I have been told I have Chronic Fatigue Syndrome, Fibromyalgia, M.E. possible M.S, etc.  I’ve been to over 20 G.P's, many specialists, etc.  All have misdiagnosed me and sent me home with no treatment or the wrong treatment. 

Sadly, the 16 year marriage ended in 1993 due to pressures of illness with no explanation as to the cause or cure.  We spent thousands of dollars on medical bills but nothing worked.  My husband grew resentful of me being ill, and I couldn’t cope with his anger.

In 2000 I joined an internet support group.  One lady recognized my symptoms as Lyme disease.  Lyme is caused by a tick bite.  I had never traveled to any known Lyme areas or even seen a tick.

My doctor, agreed that I have symptoms of late-stage Lyme, but said there is no Lyme in Victoria.

I found several articles stating that Lyme can be sexually transmitted.  Photos of the Erythema Chronicum Migrans rash which is a sure sign of  Lyme, looked identical to the rash my ex-husband had in the early weeks of our marriage.  He had traveled to coastal northern N.S.W. and Queensland prior to our marriage, which are known Lyme areas.  Ticks love to crawl into moist, dark places like armpits.  I believe he was bitten by a tick and carried the spirochetal infection ever since.  He told me he had the rash long before our marriage.  Apparently ECM rashes can recur long after the tick bite.

The Borrelia spirochete is almost identical to Syphilis, but more complex.  One can be a carrier, without many symptoms.  Typically, the brain and emotions are affected.  

In 2001 my new husband Vic, and I traveled to see Dr. Bernie Hudson, head of the Infectious Diseases Department at Royal North Shore Hospital, Sydney.  Dr. Hudson agreed that Lyme disease is in Australia and could cause all of my symptoms.

Lyme is one of the fastest growing infectious diseases in America next to AIDS.

Recently American scientists found it in semen and other body fluids. People can be infected  from a bite or sexually and misdiagnosed as CFS, fibromyalgia, M.S., ALS, Parkinson’s Disease, dementia, Multiple food and chemical sensitivity, etc.  Many people never get the rash.  Tests done on 150 ALS patients found Borrelia Burgdorferi (Lyme bacteria) in every one.  Many M.S. patients have tested positive
for Lyme bacteria and improved with appropriate antibiotic treatment.

If treated early, Lyme is mostly curable with Doxycycline.  Any treatment I had would have been negated as my ex-husband was never treated. 

The misdiagnosis has cost me my career, family, finances, friendships, capabilities and almost my sanity.  I am now on a Disability pension and my new husband on a Carer's pension.  We were married with me in a wheelchair.  At times I was so disabled that I required district nurses to sit me up in the shower.  Though I usually look well, Lyme has affected my vision, balance, muscles, joints, hearing, sense of smell, memory, swallowing, etc. 

There are no accurate tests for Lyme.  Westmead Hospital test for American strains. Royal North Shore Hospital test for Australian and European strains. An antibody response may show up in early stages, but the spirochetes quickly leave the bloodstream and go into the brain and Central Nervous System.  My new husband and I have tested negative in these tests so far, common in Late-stage Lyme.  Recently I tested positive on  newer PCR testing with Australian Biologics. They found Lyme in my DNA.

At 22 I was working in Pharmacy and studying at night.  I was not bushwalking, camping or gardening.  I always lived in Melbourne and haven’t traveled much.  Four years of antibiotics have failed to kill the infection.  When given antibiotics the spirochetes change into a cyst form which the antibiotics cannot penetrate. Flagyl does open the cysts but is toxic to take for any length of time.  Currently we are using experimental technology from America in the hope of killing the bacteria.

Some American doctors claim 90% of their CFS patients actually have Lyme. Dr. Hudson has over 200 Lyme patients.  Many doctors on the East coast of Australia are treating Lyme.  Ticks can be the size of a pin-head, so you don’t often see them.  They inject an anesthetic, so you don’t feel them bite.  Most doctors in Australia don’t know much about Lyme and are not looking for it.  Most doctors believe that Lyme is not sexually transmittable.  Nick Harris, who runs Igenex Labs. USA, says that CFS/M.E. is Lyme.  Most CFS patients are never asked if they have traveled to Lyme endemic regions.  Even if Lyme patients acquire an accurate diagnosis, their partners are rarely treated.  I tell my story in the hope that others may be helped.

Sincerely,

Rosemary