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Success story: Late Lyme diagnosis with a happy ending

Mary C. of New Hampshire feels that the time is now right to share her story. She has weathered severe storms to get to this point, including a grand mal seizure, two months isolated in a recliner and two years on the corticosteroid Prednisone.

“Yes, I’ve been prescribed the wrong medicines, and yes, it’s taken a long time to get well,” she says.

But her message to those who are struggling with Lyme? “Don’t give up!”

Mary’s Lyme diagnosis came at a price of many long years. Listening to her story, it seems incredible how many medical professionals offered her questionable advice and ignored obvious signs. For example, she was not tested for Lyme disease even after suffering the seizure. The doctor who examined her told her that “people have seizures all the time.”

She compares her situation to that of a prisoner, wrongly jailed for years, who finally meets a lawyer determined enough to investigate the truth. Finding the prisoner innocent, she is set free at last.

She says, “I’m 58 years old but I feel like I have a new life.”

As for spending so many years “in jail” with the wrong diagnosis, Mary is far from blaming doctors and medical experts. She reminds us, “that is why we call it practicing medicine. We haven’t perfected it yet. And chances are good that those doctors were doing their best with the knowledge they had at the time.”

Admiring others who have told their stories of healing from Lyme, she keenly observes that several are professional athletes, such as Perry Fields, who possess a deep inner drive to push themselves with Herculean effort.

Mary, who has owned and operated an automotive business with her husband for more than 30 years, says, “I’m not an expert in anything. I only have a small amount of that type of drive. I want to talk to people who are more like me.”

Although she may not agree, personally I think Mary’s long struggle for a correct Lyme diagnosis also contains a ring of heroism.

For 26 years she worked her way through a confusing maze of misplaced assumptions and misdiagnoses. She was told she had Lupus. But the diagnosis never felt right to her.  

At one point, a doctor pointed out there was no way Mary could have Lyme disease, because of course, that only existed in Lyme, Connecticut!

At last, in a particularly heart-rending turn of events, both Mary and her mother were diagnosed at the very same time. Her mother died of cancer just five days later. However, she got the opportunity to tell her daughter that she could go and rest in peace, knowing that Mary had finally received a correct diagnosis and could now get the right sort of treatment.

After 26 years, she finally knows what she’s dealing with. And now, this self-described, “overweight, carbohydrate junkie” begins her days with a cardiovascular workout on the elliptical and bike, and eats healthy foods. It’s been a long journey, but today she is well on her way to living healthy and Lyme-free.

Her nurse practitioner’s advice? “Whatever you do: keep moving, keep moving!”

Mary will never forget the afternoon she spent, back in 1986, helping a friend clean out a shed.  That day a tick bit her ankle, but she didn’t discover it, embedded and engorged, for two days.  Her leg swelled and she developed a bullseye rash. At the time, neither she nor her doctor knew anything about Lyme. They assumed she was having an allergic reaction to the tick bite, and he prescribed Benadryl.

And that was just the beginning.

I invite you to listen to Mary tell her story in her own words.

Join the LDRD to hear the interview and over 20 other success stories along with over 20 interviews with Lyme experts.


Lyme Diagnostics

If you suspect you have Lyme, doctors can form a diagnosis by your considering your symptoms, history and serology.  Most of the Lyme literate docs whom I have interviewed say they will start treatment on the basis of a clinical diagnosis, so the patients aren’t left waiting and wasting precious time before killing the Lyme bacteria.

Typical Lyme tests are the Western Blot, ELISA and PCR. However, these tests have limited clinical value. Only when the infection is active can the bacteria be measured and identified.

Lyme bacteria has survived throughout millennia because it has the ability to cloak itself and evade the human immune system. Therefore, it can be impossible to detect, using such serology tests.

Aside from a clinical diagnosis, there are some new approaches. A Wisconsin research and education company, NeuroScience, Inc, working in conjunction with an independent laboratory called Pharmasan Labs, Inc, have teamed up in the name of improved diagnostics for Lyme disease and other illnesses.

Dr. Gottfried Kellermann, CEO of NeuroScience, Inc. states on the company website: "It is my life mission to improve the lives of people through better science."

NeuroScience has created a diagnostic tool called My Immune ID-Lyme, which “utilizes the immune memory and cytokine alterations to identify any B burgdorferiexposure (current and/or past) and therefore identify Lyme disease even when B burgdorferi is successfully evading the host immune system or is currently dormant.”

If you’re able to communicate well with your doctor(s), encourage them to use newer, better ways to test for Lyme.

The next step, of course, is successful treatment.

Once you know you have Lyme, I encourage you to treat it from every angle: intentional, behavioral, social and cultural. This integral healing approach leaves no stone unturned. It includes body, mind, spirit and shadow.

For further information on treating Lyme from every angle, or  the cross-training approach, see the 100 Perspectives.

Be fearless in fighting Lyme and insist that your doctor is too.

Be well!