Kelly’s Story

Introduction

In January of 1999, Kelly Burke was a healthy, well-adjusted 39 year-old dynamo of woman. As a self-employed professional graphic designer, illustrator, wife and mother of two, foster parent, seamstress, church and school volunteer, in fact she was often criticized by some for doing too much – making the rest of us look bad!

From 1999 to 2004, it was a much different story. Kelly lives with constant pain in her joints and hips, she has episodes of blurred vision, disorientation, skin eruptions of the face and neck, heart palpitations, shooting limb pains, forgetfulness, as well as a number of unexplained symptoms which have included facial paralysis, hair loss, headaches, numbness, sleep disturbances, and blackouts. She is unable to work a full day without extreme fatigue, and her two young children cannot understand what has happened to their once-active mother.

Kelly’s Story

The following is a chronology of her story from 1999 to 2006 (some dates are approximate – best guess from memory, the doctors names mentioned herein are fictitious)

May 8th, 1999 – Kelly takes a walk in and her father’s back yard in New Ross, NS . Her father tells her to watch for ticks, as there are many more than usual this year, and they are different ones (much smaller, and black) than he’s seen in his over 70 years as a woodsman. Kelly heeds his warning, and checks herself for ticks upon her return. The Burkes also note a huge infestation of voles (small rodents) which have dotted his entire property with underground tunnels.

May 10th, 1999 – Kelly notices a small speck under her wristwatch, and discovers a tiny black tick attached to her skin. She squeezes it and pulls it off, not really thinking too much about it.

May 20th, 1999 – an acquaintance (who is a nurse) notices a circular rash on Kelly’s forearm. She suggests that Kelly see a doctor about the unusual rash.

May 26, 1999 – Kelly visits Dr. Brooks. Even though the rash has mostly disappeared, Kelly remembers the tick bite, and inquires about possibility of Lyme disease. Dr. Brooks consults a textbook, and reassures her that there is no Lyme disease in Nova Scotia.

July 13th, 1999 – Kelly is referred to Eye surgeon, Dr. Hamid to investigate blurred vision, headaches, and floaters. She is examined, but no explanation can be given for her symptoms.

August 20th, 1999 – Kelly visits Dr. Brooks with complaints of sleeplessness, unusual weight gain, and hair loss. He prescribes a trial dose of antidepressants.

September 9, 1999 – Return visit to Dr. Brooks with symptoms unchanged. He prescribes Celebrex for one month.

October 1st, 1999 – Return visit to Dr. Brooks after three weeks on Celebrex, Kelly feels worse – more tired, confused, says she finds it “hard to focus”. Kelly discontinues the of Celebrex.

October 25th, 1999 – Kelly continues to feel tired and with no energy despite no apparent physical problems. Dr. Brooks feels her symptoms are likely due to depression. He prescribes a course of another antidepressant – Wellbutrin. Kelly tries these antidepressants but with no effect.

February 14th, 2000 – Kelly visits Dr. Brooks with her external ear swollen, red, and hot. He prescribes seven days of Amoxycillin.

April, 2000 – Kelly notices numbness and drooping of the right side of her face, which can even be seen in her driver’s license photo taken that year.

September 26th, 2000 – Complaints of aching joints and hips sends Kelly to rhumatologist, Dr. Marvin who performs a battery of tests, acknowledges Kelly’s pelvic pain, but cannot define the cause.

October 24th, 2000 – results from bloodwork ordered by Dr. Marvin suggest possibility of Sjogren’s syndrome. Dr. Marvin prescribes anti-inflammatory (Arthrotec)

February, 2001 – Kelly feels poorly, but is convinced she is not depressed. During this time she is continuing to have tremendous joint pain, sleeplessness, forgetfulness, and unexplained shooting pains and numbness in her limbs. She goes on a vacation to Mexico with her family, and while there, experiences strange rashes and swelling of her neck. Upon her return, she visits Dr. Winthrop who believes this may be a reaction to one of the anti-inflammatory drugs.

June, 2001 – While investigating Sjogren’s syndrome on the Internet, Kelly’s husband stumbled upon a cross-reference to Lyme disease. He remembered Kelly’s tick bite from 1999, so he looked further. What he found was a list of over 40 seemingly unrelated symptoms. They were shocked when they realized Kelly had experienced nearly all of them (including the tick bite and bull’s-eye rash) since May of ’99!

July 12th, 2001 – Armed with this new information, Kelly and her husband visit Dr. Winthrop to discuss this new possibility. Although no Lyme disease cases have been confirmed in Nova Scotia at this time, a September 1999 Health Canada report confirmed that Lyme disease had been isolated from ticks found on migrating birds in Nova Scotia. Dr. Winthrop agreed to look into the possibility, and set out to find any doctors locally who might have experience with Lyme disease. She finds none.

July 24th, 2001 – Kelly’s Lyme antibody screening test (ELISA) returns negative.

July 28th, 2001 – Kelly’s condition worsens to the point where she can barely work, and she is experiencing cognitive problems which make driving dangerous. Dr. Winthrop administers a mini mental state exam which helps confirm some of these problems.

August 4th, 2001 – After several episodes of heart palpitations and two blackouts, Kelly is admitted for cardiac testing at the QEII Hospital ER. Although doctors are concerned with her initial presentation, all investigations prove normal. In a subsequent office visit, Dr. Winthrop detects an irregular “double heartbeat” and orders an EKG, which reads normal a few days later.

August 27th, 2001 – Since there are no doctors in the province with any experience treating Lyme disease, Kelly is referred to Dr. Chekov, a respected academic researcher in the field of infectious diseases. At this time, Kelly was at her worst – physically, she needed assistance with stairs to avoid falling. Mentally, she was in a complete fog – unable to remember things, and having trouble finding the right words to express her thoughts. Although her husband accompanied her to the appointment, the doctor wanted only to “cross-examine” Kelly, trying to pinpoint dates and details of events which had happened years earlier (at this time when she could barely remember what she’d had for breakfast). It was apparent from his attitude and his line of questioning that he believed this was just another neurotic middle-aged woman looking for attention. It was also apparent that Dr. Chekov probably had never actually treated a case of Lyme disease, nor was he even up-to-date on current findings about the disease, its diagnosis, and treatment. Kelly’s husband even attempted to show Dr. Chekov a Health Canada report which identified the black-legged tick and the Lyme organism had been found in NS (very close to the area where she was bitten) in 1999. The doctor refused to even look at any of our information. He did agree (begrudgingly), to prescribe 30 days of Doxycyclene (the standard treatment for early-diagnosed Lyme) for its possible placebo effect. He also suggested a follow-up with antidepressants for management of chronic fatigue syndrome and/or depression, and a follow-up with a neurologist to screen for possible MS.

August 27th, 2001 – Kelly visits Dr. Marvin for follow-up. Despite exhaustive diagnostic imaging and bloodwork, Dr. Marvin can find no diagnosis for Kelly’s symptoms. Dr. Marvin notes that symptoms are consistent with Sjogren’s syndrome, but that serology testing for this has turned up negative. Dr. Marvin doubts the possibility of Lyme disease contracted in Nova Scotia, but defers to Dr. Chekov as “…more of an expert on the topic of Lyme disease than I am…”

August 27th, 2001 – Kelly initiates treatment with 200Mg/day Doxycycline.

September 11th, 2001 – Kelly remembers this day for two reasons: The World Trade Centre tragedy, and she realizes it is the first day in over two years that she is free of pain and symptoms!

October 17th, 2001 – Kelly is referred to neurologist, Dr. Bonn. After a completely normal examination, he cannot provide a definitive diagnosis for her varied neurological symptoms. He recommends further investigation with an MRI brain scan to rule out Multiple Sclerosis.

February 10th, 2002 – Kelly’s treatment with Doxycyclene is suspended. Dr. Winthrop agreed to treat Kelly for six months, and she fears that any further treatment will jeopardize her career by treating an illness which the local specialists say Kelly doesn’t have. When she called Dr. Chekov to tell of Kelly’s progress on antibiotics, he chastised the GP for prescribing such a lengthy antibiotic treatment.

March 30th, 2002 – Although she has been nearly symptom-free since stopping treatment, she notices some previous symptoms are beginning to reappear.

June 15th, 2002 – Kelly’s symptoms have returned to previous levels.

January 07th, 2003 – In hopes of a more open-minded evaluation, Kelly is referred to Dr. Menlow, a specialist in internal medicine. The Burkes hope he can look at the whole picture, and make a clinical diagnosis based on her multitude of unexplained symptoms. The Burkes also bring a detailed drawing of Kelly’s Lyme rash, and a an information brochure about Lyme. Dr. Menlow examines Kelly, totally dismisses any possibility of Lyme, and concurs with Dr. Chekov’s assessment. He suggests the possibility of a sleep disorder, and agrees with our own plan pursue a psychiatric assessment.

January 14th, 2003 – At our insistence, Kelly is referred to Dr. Brooker, a psychiatrist, for evaluation. Kelly endures a very personal and rigorous interview. The doctor concludes that Kelly is not suffering from a sleep disorder, and that psychiatric factors are not playing a part in her clinical presentation.

January 20th, 2003 – Since Dr. Winthrop cannot legally treat Kelly for Lyme any longer, the Burkes search out Dr. Kate, a board-certified neurologist who has been treating Lyme disease in Connecticut for over ten years.

March 11th, 2003 – Kelly is seen by Dr. Kate in Connecticut, who clinically diagnoses her with Lyme disease. She immediately begins treatment with 200mg Doxycycline, and 1000mg Cefuroxime daily.

March 19th, 2003 – Kelly receives a positive IgM western Blot result from Stony Brook University Medical Centre Labs in New York.

March 26th, 2003 – Kelly receives a positive blood PCR (b. Burgdorferi DNA) test result from MDL Labs in Mt. Laurel New Jersey. She also tests negative to co-infections Bartonella, and Babesia.

May 5th, 2003 – Armed with proof of Kelly’s Lyme infection, the Burkes fax a letter (with accompanying written diagnosis and positive test results) to Dr. Strong, Nova Scotia’s Medical Officer of Health. They are hoping this news will alert Public Health that Lyme was contracted in the province as far back as 1999. They also hope that this information will shed some light on the possibility of other cases which have most certainly been missed.

May 25th, 2003 – Dr. Strong responds to the Burkes’ letter by concluding (after consulting Dr. Chekov and QEII lab virologist Dr. Leeds) that Kelly does not have Lyme disease! Strong claims that her positive IgM Western Blot test is likely a false-positive, and then goes on to question the quality control of MDL lab in New Jersey (who reported the positive PCR (b. Burgdorferi DNA) test)! The Burkes are both stunned and amazed.

August 10th, 2003 – Kelly’s symptoms are marginally better, but recovery is much slower this time. She maintains treatment with 200mg Doxycycline, and 1000mg Cefuroxime daily.

August 28th, 2003 – The Burkes respond to Dr. Strong’s letter with an affidavit from MDL lab which attests to her positive PCR results, and outlines in great detail the rigorous quality control and exemplary record of the lab and its procedures. They also forward some background on Dr. Kate, and a list of abstracts of over 100 peer-reviewed medical journal references which call into question the sole reliance of serological testing for Lyme diagnosis.

September 1st, 2003 – Kelly’s symptoms begin to reappear, despite her uninterrupted antibiotic treatment since March 2003. Dr. Winthrop is prescribing the antibiotics based on advice she receives from Dr. Kate, but he is very difficult to reach.

September 24th, 2003 – Dr. Strong responds to my letter of August 28th. This time he makes no conclusions, but suggests the Burkes forward this information to Drs. Chekov and Leeds, as it is their diagnosis which will classify Kelly’s illness as Lyme for Public health reporting.

October 30th, 2003 – Kelly’s symptoms have nearly all returned, including fatigue, arthritis, shooting pains, mental fog, and facial palsy. She is becoming very discouraged, and is unable to reach Dr. Kate.

October 31st, 2003 – The Burkes forward the affidavit from MDL Lab, along with the journal references from the August 28th Dr. Strong letter to Dr. Chekov and Dr. Leeds. They learn that both doctors are away until December and April respectively.

November 5th, 2003 – Dr. Kate advises Dr. Winthrop to switch Kelly’s medication to a new daily combination of Biaxin and Plaquinal.

December 14th, 2003 – Dr. Kate calls Kelly with news of more positive tests! A second round of tests reveal another positive PCR test for Lyme, a positive PCR for a mycoplasma co-infection (M. fermentans), and a positive Western Blot (IgG) which meets CDC criteria. Dr. Kate wants to consult with Dr. Winthrop to discuss a change of treatment (probably to suggest IV therapy). Kelly is currently waiting for Dr. Kate and Winthrop to confer. Dr. Winthrop suggests asking Dr. Kate to speak to the infectious disease resident on-call to see Kelly ASAP, and initiate a new treatment program (hopefully IV antibiotic therapy).

January 17th, 2004 – Kelly’s condition is not improving at this time. She is hoping to secure IV antibiotic treatment in Nova Scotia once Dr. Kate can consult with an infectious disease specialist here.

February 10th, 2004 – Dr. Kate contacts the Infectious Disease resident on call in Nova Scotia. He reaches Dr.Hans, and strongly recommends that Kelly be treated with 28 days of IV Rocephin.

March 3rd, 2004 – Dr. Hans examines Kelly. The Burkes sense his reluctance to treat her, but he feels that her positive PCR results are difficult to ignore. After explaining the risks associated with IV treatment, and the caveat that treatment may not work after such a long time, he proceeds with the 28 day intravenous Rocephin treatment.

April 6th, 2004 – Kelly completes 28 day IV treatment. She notes some improvement in her arthritic symptoms but nothing too dramatic. The attending nurses are concerned with her unusually low heart rate and low blood pressure.

April 2nd, 2004 – Dr. Hans does a follow-up with Kelly. He notes some improvements, and also refers her to a cardiologist to investigate her cardiac symptoms. Dr. Hans puts Kelly on an additional 3 month regimen of oral Doxycyclene.

April 10th, 2004 – Kelly is slowly noticing some dramatic improvements! Her arthritic symptoms have mostly abated, her energy and physical stamina are returning, and she is generally feeling much better. She is also noticing improvements in her memory, and a lessening of her “mental fog” state.

May 19th, 2004 – NDP Leader, Darrell Dexter brings up Kelly’s case in the NS Legislature. He asks the Health Minister why Kelly had to be diagnosed and treated in the US at her own expense, why NS is using unreliable antibody testing, and when the Health department will “get it’s head out of the sand” with regards to Lyme disease. The Minister seems totally unaware of anything to do with Lyme disease, and agrees to get back to Mr. Dexter.

The full text of the debate is available at: http://www.gov.ns.ca/legislature/hansard/han59-1/house_04may19.htm

May 20th, 2004 – The story is picked up by the Halifax Daily News. Due to the local armed standoff making big news, Kelly’s story is relegated to page 10.

May 25th, 2004 – Despite the fact that the Daily News story was buried, and only Kelly’s name was mentioned, four different Nova Scotians have somehow found us, and shared similar stories. All had a known tick exposure, all had symptoms consistent with Lyme disease, all had been negatively Lyme-tested locally, all were denied treatment, and all are apparently still very sick.

July 8th, 2004 – Larry gets a call from a woman who works in the Provincial Government. She is trying to find out as much as possible about Lyme. Her 10 year old son had an engorged tick removed from his scalp. Larry gives her as much information as he can.

July 15th, 2004 – Sadly, Kelly is noticing the return of some of her neurological symptoms – she is currently on a maintenance dose of Doxycyclene, and is coping, but very discouraged. She is still better than before the IV treatment, but the Burkes fear that the neurological symptoms may be creeping back in.

Almost worse than the disease is Kelly’s treatment by others in her own family and in the community. It is obvious that some think she is feigning illness to get attention, and Kelly and Larry have even heard the rumour that some believe her latent reclusion is due to alcoholism.

October 13th, 2004 – Symptoms are worsening, and the Burkes contact Dr. Murakami, one of Canada’s few Lyme literate physicians, in Vancouver, BC. He agrees to see her, and the Burkes travel from coast to coast (at our own expense) to meet in his office. Dr. Murakami examines Kelly after reviewing her files, and agrees with the diagnosis from Dr. Kate in CT. He also explains why her treatments have failed in the past, due to the fact that the medications have not adequately targeted both the spirochete and the cyst forms of the bacteria. He prescribes a combination therapy of Biaxin and Tinidozole for three months.

January 13th, 2005 – After three months of combination antibiotic therapy, Kelly has noticed steady and measurable progress. Dr. Murakam continues the same treatment for an additional two months.

March 15th, 2005 – Abatement of symptoms has reached a plateau, with significant overall gains, but little or no improvement since mid February. Dr. Murakam decides to discontinue treatment after one month of no demonstrable improvements.

August 18, 2005 – Although Kelly has remained relatively well since March, she is beginning to notice some of the neurological symptoms (tingling, shooting pains, numbness) reappearing. Dr. Murakam suggests trying another combination – Tinidozole and Ketek for a three month treatment.

November 18th, 2005 – Kelly’s condition has improved to about 90% of her pre-Lyme state. She has very little arthritic symptoms, her cardiac symptoms have all but disappeared, and she has much more energy than before. At this time, she decides to give her body a rest from years of antibiotics, and investigate the herbal protocols described in the book: “Healing Lyme” by Stephen Harrod Buhner. The Burkes highly recommend all Lyme patients read this book. Even if you don’t subscribe to the herbal therapies he suggests, it is by far the most comprehensive reference on the mechanics of the disease available. Buhner believes that antibiotics do have a role, but explains all types of treatment in great detail, with many scientific journal references to back up his claims.

The book called: Healing Lyme: Natural Prevention and Treatment of Lyme Borreliosis and Its Coinfections, by Stephen Harrod Buhner

It is available at: http://www.amazon.ca/exec/obidos/ASIN/0970869630/qid%3D1150049953/701-4739981-2161929

March 30th, 2006 – Kelly has remained on Buhner’s herbal protocol (and free of all antibiotics) since November. Her symptoms have had slight improvements, but best of all, she has not relapsed. The herbal protocol seems to at least hold the disease at bay. There seem to be little or no negative side effects which are associated with long-term antibiotic use. Life is good!

April 28th, 2006 – Sadly, some of Kelly’s cardiac, and neurological symptoms have begun to show up again. On the positive side, she has remained quite well for nearly a year, and free of antibiotics for 5 months.

May 1st, 2006 – Under the guidance of Dr. Murakam, Kelly works with a local GP to revisit Kelly’s treatment with the Tinidozole and Ketek. She has discontinued the herbal protocol while using antibiotics at this time.

June 10th, 2006 – Kelly continues with her treatment. She is currently undergoing investigation for cardiac function.

  1. Rachel Metzdorf on said:

    Hello. I’ve had lyme since born. Re infected spring 2012. Had a stroke. Just about every sym. Am home bound and bed bound. Would love to discuss our stories. Thank you.

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