Diane’s Story

I was bitten here in my garden on Salt Spring Island, BC Canada on May 9 or 10, 2003.

The tick and the bulls-eye rash were discovered on May 12 whereupon my husband removed the bloated tick.

I saw my doctor on May 15, and was seen by a student doctor who diagnosed it as Lyme Disease and recommended a month’s antibiotics (doxycycline). Despite this recommendation, my doctor gave me a prescription for only 2 weeks treatment. I offered to show her the bloated tick and asked if it should be tested. She declined both offers.

On my return two weeks later I was told I couldn’t have had Lyme as we don’t have it here on Salt Spring. There was no more treatment even though I complained that I was sicker than my previous visit, had lost my voice and had chills, fever and fatigue.

I returned two weeks later at which point I was very sick, had severe laryngitis, fatigue, rapid heart rate, etc. On these visits I was told I probably had “the flu” or had picked up a virus somewhere. (The doctors records indicate a drawing of the bulls-eye rash and mention Lyme. Later visits it is listed as the differential diagnosis.) It was a year and a half later that I was finally so sick that I was hospitalized in Victoria where I stayed a month and checked for every disease known to man – all negative. Finally at my insistance, an infectious disease specialist was brought in who diagnosed me as having Late Stage Lyme. By this time my lungs, heart, and brain were affected, not to mention numbness of my hands and feet, burning lungs, and unrrelenting fatigue as part of the parcel. This Infectious Disease doctor put me on IV antibiotics for 6 weeks followed by 8 weeks of oral antibiotics.

I improved sufficiently to be able to function, albeit at a much lower level than previously.

In November 2006, 3 1/2 years after the initial tick bite and two years after starting treatment the Infectious Disease doc tells me that I will not improve any more and may get worse and there is nothing more he can do for me. My life is a tiny shadow of what it was. I require morphine and gabapentin to deal with the pain and other cocktails to deal with the other symptoms such as fatigue and sleeplessness.

I had to sell my professional hand-weaving business of 25 years, stop traveling on teaching tours of North America, resign from Boards where I was a director. I must live quietly with as little stress as possible. My husband has become my caretaker. Our plans for our retirement smashed by this disease – and by that first doctor’s blindness to the disease.

– Diane

  1. Brian on said:

    Diane; I never got as sick as you did except perhaps for heart fibrillation, but in many ways my story is reflected in your. I went to my doctor in 2009 with a large erithma migrans on my inner thigh and have been sick ever since. I knew nothing of Lyme disease then and so did nothing to challenge my doctor at the time. He sent me for blood tests that first day and then a week later and told me I was clean. It was a year later that I finally figured out why I was sick so much. I have been try to get help ever since. It has only been in the last year or so that I have started to be continually ill in a way that is limiting me and I have recently gone to Wisconsin for help. I now have a cocktail of drugs that I have to buy whose cost just about amounts to my pensions. I am hoping that Pharmacare (Manitoba) will be able to help? Every now and then I get a little angry and think that if my doctor had only given me two weeks of antibiotics right at the start everything would be quite different now.. Know that my thoughts are with you. Brian.

  2. janice ruth on said:

    Do you know about Dr. Marty Ross of The Healing Arts Partnership in Seattle. He is a must see for western Canadian chronic Lyme sufferers. Check out his web sessions on youtube and get in touch with him! He treated me for Lyme disease:.

  3. I am so sorry to hear your stories. Have either of you taken legal action against the doctors who neglected to properly treat you? Doctors cannot be expected to be perfect; however, in many or most of these cases the doctors are grossly negligent by failing to treat their patients. “First do no harm” is part of the Hippocratic oath doctors take. What would happen if a patient had chest pain and a delusional doctor said “there are no heart attacks in our state or country” and the person had a heart attack? The doctor would be sued! Hold them accountable! The medical boards need to be accountable as well. They need to require the doctors to learn about Lyme & co-infections. Most doctors are ignorant on the subject and many others try to avoid it because they don’t want to get involved. Make it worse for the doctors to not treat Lyme!

  4. Alexandra222 on said:

    Hi Diane, I just want to ask if someone ever tried using medical cannabis as an alternative medicine? I’ve been reading some article about medical marijuana and how it can help you in terms of pain management, anxiety disorders and panic attacks, inflammation, even cancer and a lot more. Like this review on a certain strain blimburnseeds.com/grizzly-purple-kush-auto, it has a very high pain suppressing effect. Cbd and thc are also new to me and I don’t even smoke. Alternatively, they’ve also find new ways to infuse cannabis on food and beverages. If this is true I cant find any solid conclusive evidence that speaks to its efficacy. Any personal experience or testimonial would be highly appreciated. Thanks

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