Right diagnosis, right treatment

Lyme Disease, misunderstood and often called the ultimate mimic

Char Harder has difficulty walking, using a cane or sometimes a walker. Life has changed for this once-vibrant woman. She has Lyme Disease.

However, its been an 18-year battle for the right diagnosis and the right treatment for her progressively debilitating condition.

In 1997, she was bitten on the knee by a tick, radiating from the red sore was the tell-tale bulls-eye rash that extended from her shin all the way up her thigh. The symptoms persisted for six months. At the same time she was bitten by a tick, Char contracted Giardia (known as beaver fever). Her doctor treated the Giardia with antibiotics, irradiated the parasitic disease but, unbeknownst to either Char or her physician, if stronger antibiotics has been administered, it would have also irradiated the yet undiagnosed Lyme Disease.

Flu-like symptoms plagued Char for the next year, she developed several life-threatening allergies and for several years she would suffer with bouts of pneumonia, sometimes double-pneumonia.

For the next 10 years, this very strong woman was being systematically knocked around and demoralized by chronic symptoms.

In 2010, facing a huge family crisis, Char went to Vancouver to help a family member and while visiting her in the hospital, contracted C.difficile, a bacterial infection which required two weeks of heavy-duty antibiotics. Within six months she battled shingles twice and C.difficile again.

Again, unaware of the Lyme Disease in her body, Char experienced a further deterioration of her fragile health. She experienced massive panic attacks, psychiatric episodes, cognitive failings and horrible periods where her memory seemed wiped clean. She had to concentrate to remember what a fork was for and how to use a tooth brush.

In 2011, suffering from waves of fear of working and being with people, Char found herself unable to work, something that had always been very important to her.

As she and husband Fred became desperate to know what was happening to her, Char began round after round of diagnostic testing. First she was told in Vancouver it was cardio-ischemia, a restriction in blood supply to tissues, then lupus, a chronic inflammatory disease, but was later cleared of both these condition as well as rheumatoid arthritis and several other conditions. Many others are falsely diagnosed with MS, Chronic Fatigue and other auto-immune diseases.

In May 2013, Char was visiting a friend who related the case of someone who was finally diagnosed with Lyme Disease by a doctor/naturopath in Calgary.

Char packed up and shipped all her results from all her specialists to Dr. Riddle and he carefully read everything. This physician wasn’t just a medical professional, he was a former Lyme Disease patient who successfully treated himself.

He clinically diagnosed Char with Lyme Disease as well as two co-infections common to Lyme Disease, Bartonella and Babisia.

She’s one year into the treatment for Bartonella and is only a third of the way to killing the Bartonella infection. At the same time she’s on six types of treatments, pills and drops for both Lyme and Bartonella, then she and her physician/naturopath will attack the Babisia. Char persists with her treatments, keeping a keen eye on the prize at the end.

None of the treatments are covered by any medical plan and some of the treatments send Char into a tailspin where racking pain and other side affects keep her in bed for days, unable to function. As the bacteria is killed off, it releases the toxins contained within and this is very hard on an already fragile body.

“I’m constantly short of breath, it’s like someones holding a pillow over my face,” she said.

“I have extreme fatigue, light and sound sensitivity as well as smell and taste and the ringing in my ears is overwhelming but the worst is the pain I experience most of the time.”

It will probably cost her more than $100,000 to banish Lyme from her body but she has much to live for – a loving husband, long delayed retirement plans and beautiful grandchildren who mean the world to her.

Lyme Disease is an infectious disease carried by various birds, rodents, deer and ticks. The disease was first discovered in 1970 when the characteristic bulls-eye rash appeared on some men in the U.S., then a large group of families in the town of Old Lyme, Connecticut, thus the name given to the disease.

The bacterium transmitted by the tick bite is a cork-screw shaped organism call a spirochete. The particular spirochete responsible for Lyme disease is Borrelia burgdorferi. If treated within the first four weeks of infection, three weeks of appropriate antibiotics kills the bacteria but left untreated, the condition becomes much worse and the treatment much more complex.

Controversy has raged concerning Lyme Disease. Difficult to diagnose and, once the disease takes hold in the body, difficult to treat. Some say Lyme is the most mis-diagnosed disease in the world. Once research began, protocols for treatment of the disease were instituted, but these protocols didn’t apply to chronic Lyme Disease as it requires a much more complicated diagnostic techniques and a prolonged treatment regimen. Most general practitioners are not familiar with Lyme Disease and some refuse to treat patients presenting with symptoms consistent with Lyme Disease or at least potentially Lyme Disease. Even respectable medical Internet sites offer conflicting information. Information about the prevalence of the ticks known to carry the disease, or number of cases of Lyme Disease also seem under-estimated and poorly reported. It’s difficult to know which facts and information to believe.

Lisa Steels, 36, is a forest protection assistant and as such, is exposed to all the forest and bush have to offer, including ticks.

In 2003, she began experiencing shortness of breath, memory loss, fatigue and other symptoms and was diagnosed with vague medical conditions. She listened to their expertise.

Over the next five years her health yo-yoed and she struggled with various conditions that affected lots of areas of her body but she remembers significant cognitive impairment.

In 2006 she distinctly remembers being bit by something in the bush and her symptoms diversified, ebbing and flowing over time.

“I remember much more respiratory problems,” she said.

In 2009, again bit by ticks, her roommate at the time removed two from her head. Her symptoms then intensified.

“But again I had vastly different symptoms which compounded existing symptoms,” she said.

“I was treated symptomatically, no one looked for one over-arching condition.”

By now her health was affecting her ability to work and she became angry and frustrated with the ongoing medical issues.

Bit again in 2010, Lisa reports that incident created the worst reaction, especially regarding cognitive abilities and nerve disfunction.

By chance, Lisa had a friend diagnosed with Lyme Disease which sent her on the path to a Dr. Ernie Murakami in Hope, B.C.

Despite public institutions advising against it, Lisa spent the $1,000 required to have her blood tested in California and now, at her own expense, receives treatment for her diagnosed Lyme Disease from a specialist in Seattle, Washington. She figures she’s facing at least another year of treatment before the disease is gone from her body.

“It ain’t cheap to have Lyme Disease,” she said ruefully.

Many desperately sick patients have also sought out the advice of Dr. Murakami who specializes in research, education and assistance to those suspected of or diagnosed with Lyme Disease.

His work is recognized internationally and he has attended and delivered clinics on the disease around the world. During this time he became familiar with the treatment of Lyme, both long term and short term, as well as the split theories surrounding the treatment of Lyme. One medical faction believed that only three weeks of treatment was adequate at any level, despite this having been disproven, while others believed long term treatment was required to eradicate the cystic form of the disease, based on biological fact.

Now retired from his regular practice, Dr. Murakami devotes his time to this very controversial topic and offers his expertise to patients, possible sufferers and doctors alike.

Lisa and Char have organized a forum in Quesnel with guest speaker Dr. Murakami, July 5 from 2 – 5 p.m. in West Fraser Timber Room at the Arts and Rec. Centre. During this free forum there will also be a screening of the documentary Under Our Skin.

For anyone potentially suffering from auto-immune diseases or want to know more about the delicately frustrating world of medical diagnosis or specifically Lyme Disease in all its facets, this is an ideal opportunity.

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