Blind Spot on Lyme Disease

https://www.thechronicleherald.ca/opinion/opinion-blind-spot-on-lyme-disease-243706/

OPINION: Blind spot on Lyme disease

Holly McKay

Published: Sep 21

Re: “N.S. health system has a handle on Lyme.” I have never written to a newspaper in my life, but after reading provincial chief medical officer Dr. Robert Strang’s Sept. 18 opinion piece, I have no choice but to speak up.

I was so completely horrified by his lack of understanding — and the lack of understanding within the conventional medical community — about what’s going on in the world of Lyme disease. Although, quite frankly, I am used to being horrified, because over the past 10 years, I have been subjected to the provincial health-care system’s utter lack of compassion, understanding and knowledge about the signs and symptoms and effective treatment of chronic Lyme disease.

I have been all over the world at this point, learning about Lyme and how to heal. I am involved in worldwide groups of patients, doctors, virologists, bacteriologists, and other specialists who have devoted their lives to studying chronic illness, Lyme, chronic fatigue syndrome, and the like, and I can assure you, as far as our provincial medical health care goes, we are being failed, plain and simple.

We are being failed when it comes to chronic illness because it is quite simply not our territory, and it is time to drop the facade. The system should step back into its place as an emergency care provider and stop pretending it knows anything about actual health and healing, let alone disease prevention.

Dr. Strang is fantastic at damage control and we are all very grateful for that, but understanding how to truly heal, and what is meant by that, is not his realm. The only thing preventing the medical system from admitting to that is the massive egos of people who feel their identity as some kind of authority on health would be threatened. Well it is, and you’d better get used to it. It’s OK to admit you’ve been wrong, and you’ll be respected beyond your expectations if you do.

Ten years, Dr. Strang. Ten years of watching my life fall apart while receiving nothing but dismissal, ignorance, and quite frankly, abuse in some cases, on the part of my general practitioner, the infectious diseases department as well as the emergency departments of the QEII, the Cobequid Centre and the Colchester-East Hants Health Centre.

I do not use the word “abuse” lightly, either. It is not a word to be thrown around unless you’ve been on the receiving end of it. I assure you, I know it first hand. I, among these hundreds of others — probably thousands — was told to see a psychiatrist; I was told it was all in my head.

An emergency doctor completely dismissed my request for a blood test or to have my blood pressure checked — it felt very low — after I was in seizures for hours. I was passing in and out of consciousness. I was told he was unable to help (or even take me seriously) because I’d taken a bag full of nutritional supplements out of desperation to heal myself because no one was helping me.

My experience with the doctor in the infectious diseases department was the icing on the cake from hell. He refused to face me or even look at me — not once! — as I sat there in my wheelchair explaining all my symptoms. When he spoke, he looked at my husband and addressed him directly using my name. It was absolutely absurd and completely confusing to both my husband and me. I have never encountered such ignorance from a supposed expert in my life.

Not only that, but the only blood test he had ordered was to check cortisol levels, and he forgot to get the results, so wrote it off as “probably unnecessary anyway.” He then told me (to my husband’s face) that he didn’t know what was wrong, but I’d probably never get better, so I’d better get used to it and get myself a therapist to deal with it.

I truly wish I had recorded this interaction, as truth is stranger than fiction. I was so astounded, in fact, that at the time, all I could do was laugh. I didn’t even get angry. But looking back, I am furious. This kind of behaviour — this lack of understanding and compassion — is mind-boggling to see coming from anyone, let alone from someone who works in health care.

Surely he knows our region has a Lyme epidemic, yet he’s completely uneducated about the symptoms? In fact, he said, “Unfortunately, we don’t do diagnostics on symptoms alone.” So it wouldn’t matter if he suspected Lyme or not; he was unwilling to even try to get to the bottom of it.

So I was forced to research alone, to figure this out on my own. Do you have any idea how difficult it is to study and research what is happening to you while your eyeballs are vibrating and your whole body is buzzing like you’re plugged into an electric socket while running on about three hours of sleep a week due to catastrophic insomnia? My body’s normal functions were completely shutting down. You don’t want to imagine, because you can’t. It’s a living nightmare that never seems to end. Relief is so rare that each day is a fight to want to live.

Year after year, I continued to go to my doctor, asking to be referred to someone who could help me. Not a single person even attempted to make sense of what was happening to me or even actually listen, truly listen, to what I was saying. I was just another sack of meat to them. My family doctor just continued to shrug her shoulders and offered very little to no interest in what what going on. In fact, it was always a fight with her to recognize the seriousness of what was happening. She wrote it off several times as psychological and pleaded with me at one point to just try antidepressants.

Finally, one day, I walked into naturopath Bryan Rade’s office, and within five minutes of explaining my symptoms, I was told I probably have Lyme. I went back to the hospital and demanded to be tested for Lyme through conventional testing here in Nova Scotia. The tests came back negative. I went back to the naturopath and had a rigorous procedure to elicit body fluids which were sent to be tested in Boulder, Colo., where they were analyzed. They came back positive.

I immediately went on a protocol for healing Lyme naturally from the information I had gathered on my own, combined with the naturopath’s recommendations. The healing was immediate. Within three months, I felt almost normal again. I’m out of the wheelchair, and I am now beginning to live my life again.

What an incredible relief it was to speak to a doctor who was compassionate, who understood my plight and who had 100 per cent confidence that I would be healed. What a contrast it was to my experience with the provincial health-care system. We are simply not equipped to deal with the epidemic that is happening here. I could go into what Lyme actually is, but they wouldn’t listen anyway. That has been made clear through my days dealing with this.

Conventional medicine is not only ill-equipped, it’s not interested in the truth because it conflicts with the establishment’s need to hold power and be the all-knowing source of information on health. But patching people up is not health care. I apologize for the choice of words, as it clearly does not do justice to the incredible amount of work and knowledge that goes into that “patching up” process.

But health is achieved from the ground up; it’s a holistic process of getting to the bottom of things through a broad, peripheral investigation. Conventional medicine works from the surface down in a narrow and focused fashion, ignoring signs that point to true causes. That’s fine; that’s their job — but can we please admit to that? Please? For the sake of our increasingly sick society?

I really think we need to recognize what we don’t know. Saying that our provincial health-care system’s Lyme testing is accurate is not true in my experience. It doesn’t mean that testing in the U.S. is accurate or not; it simply means that ours is not, and it will save a hell of a lot of pain and suffering going forward if we can just admit to that.

Holly McKay lives in Elmsdale.

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In response to Holly’s article, which has been the experience of thousands of Lyme/MSIDS patients, the following was given:

https://www.thechronicleherald.ca/opinion/voice-of-the-people-sept-29-2018-245728/#.W7nqszjmgx0.linkedin

VOICE OF THE PEOPLE: Sept. 29, 2018
The Chronicle Herald
Published: Sep 29 at 6 a.m.

Heroic women
I am responding specifically to Holly McKay’s opinion piece, “Blind spot on Lyme disease” (Sept. 22), about what she endured with her Lyme dilemma and how our small-minded medical community ignored her many cries for help. It appears our doctors either don’t have the time to listen, as they’re understandably busy, or are indifferent to this real-life condition.

I see a correlation here, too, when I read of Melissa Boutilier’s experience (“U.S. Lyme treatment works,” Sept. 11 letter). Not only had she endured similar responses from her respective doctors, including specialists, about the prescribing of sleeping pills and/or antidepressants, she was also informing all those folks at that time who need a cure that there was indeed one farther away in the U.S. available with the ILADS treatment and heartily recommended it despite what our chief medical officer, Dr. Robert Strang, was telling us.

One woman, Lisa Learning-Ali in Mahone Bay, took it into her hands literally by creating a spray against these ticks when her two sons were finally diagnosed with Lyme disease. Given these kinds of earnest and detailed accountings, to say nothing about the torment of some, why aren’t we taking these women seriously? Is it because our medical system places this condition, along with with mental health issues, into something under a header titled “Collateral Damage,” or, as much it pains me to say, is it because they’re just women?

Well, whatever it is, these brave and intelligent women are my heroes and most Nova Scotians are indebted to them for sharing their stories.

Cliff Williams, Windsor

Open-minded inquiry
Re: “Nova Scotia’s health system has a handle on Lyme” (Sept. 18 opinion piece by Nova Scotia chief medical officer Dr. Robert Strang).

Revered Canadian physician, Sir William Osler, pioneer of modern medical education, was famous for the aphorism: “Listen to the patient long enough, and they will tell you what is wrong with them.”

It is time for physicians, legislators and health officials to do just that. Whereas it took medical science some 500 years to gain a good understanding of syphilis, we are but 40 years into Lyme disease. The Lyme spirochete, Borrelia burgdorferi, is far more genetically complex than even Treponema pallidum, the wily agent of syphilis.

The limitations of currently recommended antibody testing methods and the reality of the persistence of the Lyme bacteria despite antibiotic treatment must be acknowledged. The pursuit of scientific answers to these problems requires allocation of adequate financial and intellectual resources and open-minded inquiry in a spirit of goodwill and co-operation.

Kenneth B. Liegner, M.D., Pawling, N.Y.