Topic: Lyme advocate on Vancouver Island, BC. passes away...
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Patricia Elaine (Jamison) Cooley passed tragically February 10, 2007 in Victoria. Disease prevented her pursuit of many interests including art. She was an active member in the Lyme and Crohn's disease communities. A memorial service will be held on Tuesday, Feb. 20, 2007.
Posts: 7052 | From Colorado | Registered: Mar 2003
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-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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kam
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Member # 3410
posted
Does anyone know the cause of death?
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
It was indeed a TBD associated fatality.
Specific details have not been released by the family yet, but I will update as I can.
Our most heartfelt condolences go out to Patricia's family, friends and all of those at the Canadian Lyme Foundation who will surely miss her special spirit.
Patricia was a stong advocate for years while still helping many others during her own battle with these devastating diseases.
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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Probably another victim of being misdiagnosed or undiagnosed for a long time. [since "there's no lyme in Canada"]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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trueblue
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-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bettyg
Unregistered
posted
my heartfelt sympathies as well to her entire family and lyme family of actovacates!
was she a lymenet member? anyone know?
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posted
That is very sad. I used to live on Vancouver Island, which was right around the time I figured out I might have Lyme and we moved because I knew that there was virtually no way I could get decent treatment up there.
Sending a prayer . . .
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
This was an article from four years ago about the problems being experienced on Vancouver Island. As you will read, Pat was a very involved advocate.
Our neighbors in Canada are going through some very uncertain times. If you think we are having difficulties here, you would count your blessings after being made aware of what they are facing as far as proper diagnosis and treatment.
'I thought I was going crazy'
Times Colonist newspaper (Victoria) Sunday, February 23, 2003 Page: D7 Section: Monitor Source: Times Colonist
The number of cases of Lyme disease on Vancouver Island is being followed with great interest by Shawnigan resident Pat Cooley, who believes she was infected with Lyme more than 20 years ago in Kelowna, at age 24.
She was recently treated by Hope physician Dr. E. M. and is now seeing tremendous improvement, but remains committed to increasing awareness about the disease. She is producing a brochure, and creating a list of Island residents with Lyme. She has collected 15 names so far.
Here are some of their stories:
Jack Julseth has suffered from joint pain, fatigue, rashes all over his body, headaches and chest pains for three decades, and in the last few years has lost 40 pounds and had cycling panic attacks and bouts of depression.
"It has been very scary," says his wife Teresa.
"Jack had a muscle biopsy at one point that showed muscle inflammation. Then in his late 30s we went to the Mayo Clinic and he was told he had psoriatic arthritis ... Then we started looking outside the medical norms. He had all his amalgam fillings out, tried all kinds of herbal treatments, smelled of garlic for months," she joked although adding: "He's really my hero."
Jack is 48 and looks as fit as a fiddle, but the owner of Three Point Motors suffers in silence, and gets by on pain pills.
Optimism started to dawn a few years ago when a dentist in the United States suggested Jack's symptoms sounded like Lyme. Jack grew up near Hope, now a confirmed Lyme area, and he remembers becoming very sick and feverish one summer, as a teenager while working outdoors. He then developed a sore back and other symptoms.
Although a blood test was inconclusive, the dentist suggested a course of antibiotics. Initially Jack felt much worse, a common symptom when Lyme treatment starts, but after six weeks the doctor was reluctant to give him more, and no one in Victoria would prescribe it, so the treatment ended.
After hearing about M. the Julseths are full of renewed optimism. "We've seen a dozen doctors, but never had a Lyme literate one before, so this is very exciting," she says.
Jen Feschuk, 27, was bitten while travelling across Canada six years ago and developed "a huge, huge bull's-eye rash all over my calf. I went to a hospital in Winnipeg and they told me it was a spider bite and gave me some cream."
Since then the Victoria woman has been diagnosed with chronic fatigue, Fibromyalgia, arthritis, even mental problems for which she was sent to a psychiatrist. She has suffered chronic flu and severe back pain, hives all over her body, fatigue, nausea, hallucinations, anxiety attacks, and intense facial pain.
"At one time I thought I was going crazy."
While studying for her B.Sc., she decided to do some research and homed in on Lyme. Two tests at the B.C. Centre for Disease Control came back negative.
Then she met M., who sent her blood to a lab in California. It came back positive -- "that shocked everyone" -- and her infectious diseases expert in Victoria, Dr. E. P., put her in hospital, on an antibiotic IV. He also sent her for a spinal tap that confirmed Lyme.
Tracey Hatley, 34, was bitten 41/2 years ago near Nanaimo, and developed a classic bull's-eye rash.
"I went to a clinic and the doctor said it was a tick bite and gave me antibiotics for two weeks, but I think that wasn't long enough."
Within weeks she started getting headaches, feeling dizzy, had a swollen knee, was terribly tired. She was later diagnosed with rheumatoid arthritis, fibromyalgia and irritable bowel disease.
When she finally learned more about Lyme disease and checked a list of symptoms she had 33 of 38. "That's the highest score I've ever had on any test in my life." Her B.C. Lyme test came back negative, but the one from California's IgeneX lab just came back positive and she hopes to begin treatment soon.
Oak Bay's Isabell McLeod was a 45-year-old ICU nurse when bitten in 1984 at Shawnigan Lake. "I had a lump on my head but my doctor said it was an infected follicle. Over the years I got sicker and sicker. I got confused, disoriented with brain fog, had pain everywhere, nausea every single day, phenomenal fatigue."
Luckily, one day her doctor read an article on Lyme and "everything fell into place." He called her back into the office, said he had made the wrong diagnosis years ago and immediately put her on long-term antibiotics. A blood test from the Vancouver lab came back positive.
The Victoria woman has been off and on low dose antibiotics since 1989 and seen some improvement, but recently M. recommended two different antibiotics taken together. Her doctor is now prescribing them for three months.
"I started on Jan. 6 and am really improving. I wouldn't have been able to even follow this conversation a few months ago."
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Hi Mel, Pat Cooley had lyme,perhaps for 20 years before diagnosis. She was treated with antibiotics and later with herbs and alternative treatments, but I imagine the lyme impact was just too great after all these years.
Pat was a strong advocate for lyme patients. She counselled many of us, including myself, by phone. She helped organize a monthly clinic for our one and only LLMD when he came to the Island. She always had time to listen, answer questions, offer suggestions, and always, she railed against the stupidiy and cruelty of the medical/political impasse here.
WE know of course, that lyme is alive and well on the Island. There are so many of us here and throughout British Columbia and indeed Canada, that struggle long-term with this disease.
I want to add that Pat was a physically very beautiful woman. She was involved in many art projects....she potted, sculpted, wrote, and gardened, and was widely praised for her gentleness and willingness to help.
She did suffer great mental anguish for a long time, and now her long struggle is over. We in BC owe Pat alot for her committment to the lyme community.
Posts: 190 | From BC Canada | Registered: Jul 2004
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Melanie, Could you please PM me 'here',,,since my e-mail and your e-mail wont talk to one another. I needed to talk to you about something. being--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey Don,
I disabeled my PM a long time ago, but I will turn it back on just for you
Islandgirl,
Thank you so very much for your added information on Pat. It sounds as if she was a wonderful advocate, and a beautiful person inside and out. I am so sorry for your loss.
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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