Lyme Madness with Lori Dennis: Part II...the Interview Continues

01/22/2017 05:11 pm ET | Updated Jan 22, 2017
Lori Dennis
Lyme Madness

Lori Dennis is a Mother on a mission to save her son from the madness of Lyme Disease. She is using her voice and speaking out to raise awareness and shine a light on the madness we have all faced going down this rabbit hole. The Lyme community tends to be a tight knit community united in finding a solution to the madness. Lori Dennis is a Psychotherapist, but more importantly, a Mother with a son afflicted by chronic or late stage Lyme disease. In Part II of our interview, Lori continues sharing her pain and frustration at a system that’s failing to help those in need. She is demanding answers and real change for those suffering. I’m honored and humbled to introduce you to my fellow Lyme Disease crusader and now, my friend, Lori Dennis.

CGO: Lori, I loved the documentary “Under Your Skin.” What did you learn in connecting with the creator of this eye opening documentary?

LD: It was an absolute pleasure to speak with Kris Newby, writer and producer of this award winning documentary. Watching her film, Under Our Skin, was so eye-opening and one of the tipping points of entering into a world unlike any other. A world where you are confronted with the controversy surrounding Lyme head on. A world that you know you can’t escape from and need to learn all that you possibly can. Kris’ unprecedented work is eye-opening and validating for all of us. She was able to tell a story that reflected millions and helped us all to understand that we were not alone and that we are not crazy. Under our Skin also inspired me and gave me the courage, the ‘permission’ to write Lyme Madness. When I interviewed Kris for my book, my very favorite line of hers was that chronic Lyme is a ‘do-it-yourself’ disease. She simply nailed it with this phrase.

CGO: You allude to many differences in the way that Lyme is looked at in Canada versus other parts of the world. There seems to be many people that would like to mislead others into believing that ticks don’t cross the border and that Lyme disease isn’t found in Canada. Clearly, that’s not the truth. What did your research show?

LD: Oh, this makes my blood boil. We are Canadian. And I have to say that I am so ashamed of our medical system. When I first began researching Lyme in Canada, I quickly learned that we are twenty years behind the US in our treatment of this disease. And no offense, but that’s a low bar to begin with. The very few, and I do mean very few (perhaps two or three) doctors who were brave enough to treat this disease in the earlier years were all annihilated by the College, and the courts, had their licenses revoked and were forced out of practice. They went through hell on the behalf of Lyme sufferers. As a result, you will not find more than a handful of MDs across Canada who will stick their necks out to treat Lyme sufferers. And who can blame them really? I do resent the majority of Canadian doctors who still insist that there is no Lyme here and that ticks don’t cross the border. So ridiculous. They render themselves foolish when they utter such nonsense. So, as a result of all this, Canadians are forced to go to the US for antibiotic treatment. There is a very well regarded Lyme Literate doctor who lives in Canada and crosses the border every week to treat Canadians in the state of New York. She had Lyme disease and has taken it upon herself to be the treating physician for our sufferers. But she is not entitled to treat where she lives. How crazy is that! We are all so grateful to her and her kindness and her bravery. I also interviewed a wonderful doctor who treats Lyme openly here. He is truly an anomaly in this country. We are grateful to him and to others who are still willing to learn, and to help, including Lyme Literate naturopaths. Oh, and I can’t forget our beloved Dr. Ernie Murakami who is a national treasure in the Canadian Lyme world.

CGO: Thats such a travesty and so hard for most people to believe. And, you are correct in stating that the US has not exactly set a high bar in it’s treatment of Lyme Disease. Most people are unaware that once the Lyme bacteria crosses the blood brain barrier, the illness is considered permanent. It’s not going to go away. No matter what you do, you will have days when you wake up and the disease has once again kicked your ass … for the day, for the week, sometimes longer. Stress is a well documented trigger that can awaken Lyme symptoms. What is Matt’s current prognosis and his experience with relapsing?

LD: Matt has been holding steady for several months now. But as you know, steady with chronic Lyme does not mean that he’s always feeling well. His symptoms wax and wane daily, weekly. They used to change and morph and rear themselves hourly. So that’s an improvement. He hasn’t had a true relapse in several months. Retaining this level of health, which is by no means good enough and he’s always striving for more, requires maintaining a very strict diet (no gluten, no dairy, no sugar, no alcohol, no simple carbs) and continuing to take a mountain of supplements and naturopathic protocols. It’s not easy but it’s absolutely necessary to keep the toxic load down and the immune system working. Yes – Lyme crosses the blood brain barrier and it also detonates the immune system, and the gut. So what you end up with is a toxic stew of bacteria, opportunistic infections and viruses, and an immune system that isn’t working well if at all – when it’s primary purpose is to keep these things at bay. Healing requires a three step process which is never linear, and it requires incredible vigilance, tuning in to your own body, its rhythms, it’s particular set of symptoms and noise, and maintaining a lifestyle that is clean and toxin-free. This is no easy feat in this toxic world we live in.

CGO: Lori, you are so right. I’ve heard multiple sufferers say to me that they wish they had cancer rather than Lyme. The reasoning is not about the severity of either disease, it’s about the fact that people actually understand cancer and have empathy for those that suffer from it. Lyme sufferers tend to feel that no one believes them, much less understands them. You open up a great deal in your book about this subject. Can you elaborate for us?

LD: No one describes this better than Emily Reach White. When I came upon her Ted Talk on Invisible and Incommunicable Diseases and her essay entitled ‘At Least It Isn’t Cancer’, I finally felt less alone. She put into words what I had been feeling for quite some time. That with chronic Lyme disease, unlike cancer, sufferers don’t get much empathy, they are not met with much understanding, they are not receiving many visitors, well-wishers, casseroles or sympathy cards. They are basically ignored, silenced, passed over – by doctors, family and friends alike. It is a lonely, isolating and confusing journey. Emily’s father had chronic Lyme. At a time when she didn’t have a Facebook community to rely upon. She grew up witnessing the ravages of this invisible disease and she so brilliantly explains how it affected her. I am grateful for her writing and having found her early on in our journey. I hope that my book will do the same for others. Help them to feel validated, understood, less alone, more empowered.

Lori Dennis
Lyme Madness

CGO: Lori, I love how open you are about the political implications of Lyme disease. I believe I recall you saying that if it happened to even one of these politicians, the entire situation would most likely change. In a nutshell, what would you like to say about the political circus and the fact that not only is nothing being done to help improve the diagnostics, insurance coverage, awareness amongst many others but it seems like there is an intention to mislead the public when it comes to the severity of this illness?

LD: It is a political circus. Forty years of falsehood, obfuscations, misrepresentations have been widely disseminated by the medical powers-that-be. From the very first large outbreak in Lyme Connecticut in the mid 1970’s, we have been led to believe that there is no such thing as chronic Lyme disease. And that those who do contract Lyme are very few in number. For decades now, we have all been told over and over again that this is an illness that is ‘hard to catch, easy to diagnose and easy to treat’. This is what we are still being told by mainstream medicine all over the world. And nothing could be further from the truth. The interesting thing that has just happened is that they have announced that a new vaccine for Lyme is in the works. How, may I ask, can there be a need for a vaccine for an illness that doesn’t exist or why the need for a vaccine that is difficult to catch and apparently so easy to treat? This does not make any sense. They are backing themselves into a corner with their illogical and misrepresented position. When the CDC suddenly announced last year that the number of cases of Lyme in the US had jumped from 30,000 to 300,000 cases, we all knew that something was up. Why this sudden change in their official stance? Oh, a Lyme vaccine of course. We also know in Lymeland that 300,000 is a very underreported number of cases. We also know that the number is so much higher than that.

CGO: What do you think it will take to change the face of Lyme Disease and how can people get involved in order to make a difference?

LD: I wish I knew. This often feels like an immoveable force. Like David and Goliath battling it out. Although David did emerge the victor, and so too will we, I believe. Truth always finds the light. There is now a critical mass dealing with this medical travesty and we’re all shouting from the rooftops. So we keep doing what we’re all doing. Writing, speaking out, protesting, presenting to Congress, educating doctors, media and politicians, and putting pressure on the IDSA and the CDC. In the meantime, we seek out the handful of Lyme-Literate MDs who are working tirelessly to support us, and find medical workarounds with non-mainstream Lyme-literate medical professionals like naturopaths, homeopaths, osteopaths, chiropractors, functional and integrative doctors, traditional Chinese medicine, and energy medicine. It is unlikely that the answers to recovery are going to be found in mainstream medicine any time soon.

CGO: There’s a common belief that Lyme is “all in your head.” Clearly, there’s some truth to that as it stems from the brain which impacts all of our systems, particularly the nervous system. This can easily be misinterpreted and has been the case for many suffering from the illness as their symptoms are dismissed as a mental illness. Can you share your perspective with our readers?

LD: Every day, everywhere, in doctor’s office across the globe, people are being accused of this being “ALL IN THEIR HEAD”. They are being further damaged with misdiagnoses of hypochondria, hysteria, Munchausen’s and Munchausen’s by proxy. Or told that they are just not getting enough activity and exercise. Thanks doc. Why didn’t we think of that?

Yes, CHRONIC LYME DISEASE IS ‘ALL IN YOUR HEAD’. It’s a neurological disease after all. So many of the symptoms are neurological, in your brain, in your head, in your nervous system. Dizziness, wooziness, migraines, brain fog, cognitive impairment, depression, anxiety, malaise, sleeplessness. The list goes on an on. It is so insulting, so denigrating and sick shaming to use this phrase. It insinuates that people are being dramatic, histrionic, making it up. Nothing could be more REAL than the symptoms and suffering of chronic Lyme. Doctors need to stop saying this. And more importantly, they need to stop offloading Lyme sufferers to psychiatrists for therapy and antidepressants when they themselves aren’t able to help. Maybe they should do their job, research, learn, listen to their patients rather than using ‘it’s all in your head’ as a way to say ‘my job here is done’.

When you think about it, how can it be that millions of people are sick and faking it? That it’s all in their head. Is it really possible that millions of once healthy, active people across the US, in Canada, London, Ireland, Denmark, Australia, Germany and elsewhere are feigning sick, suffering daily beyond the pale, and participating in some kind of mass delusion–all because they have nothing better to do than to become housebound, infirm, isolated, and penniless, looking for some kinds of perverse attention with no perceivable payoff? I think not! I urge doctors world-over to stop this nonsense and start listening to their patients.

Not only that. ‘It’s all in your head’ is a phrase that stigmatizes not just Lyme sufferers but mental health sufferers. It connotes shades of ‘crazy’, insane, out of control, histrionic behaviors. It’s an all too common experience amongst the sufferers of chronic Lyme disease to hear this said. Imagine how insulting, infuriating, confusing and frightening it would be to be told that it’s all in your head when you’re clearly suffering from a bacteria-driven, immunosuppressive, neurological, post-sepsis illness. This is an illness that has been kept in the shadows for forty years as mainstream medicine continues to turn its back.

CGO: Throughout the book, you make many references to people wanting to die because the suffering oftentimes seems endless with no clear cut answers. Suicide is a real concern with Lyme Disease.  As you quote Dr. Joseph G. Jemsek, “I often tell patients, Lyme Disease does not kill you the way AIDS does, but it often makes you wish it did.” What did you find in talking to the many Lyme sufferers you encountered along the way?

LD: Yes! In a speech made by Joseph G. Jemsek, MD, FACP, AAHIVS, before the North Carolina Medical Board on July 20, 2006, he said:

“Most of my HIV patients used to die ... now most don't ... Some still do, of course. My Lyme patients, the sickest ones, want to die but they can't. That's right, they want to die but they can't. The most common cause of death in Lyme disease is suicide. In the current day, if one compares HIV/AIDS to Lyme Borreliosis Complex patients in issues of 1) access to care, 2) current level of science, and 3) the levels of acceptance by doctors and the public, patients suffering with advanced Lyme Borreliosis Complex have an inferior quality of life compared to those with HIV/AIDS in NC. This statement may seem heretical to some of you, I'm sure. But I can say this with authority -- and I am really the only one in this room today who has the intellectual and experiential authority to do that.”

I see and talk to chronic Lyme sufferers every day. I know that many want to take their own lives. The ones who are outrageously sick, with no relief in sight, are overwhelmed by their symptoms, their suffering, their losses, their isolation. Life just becomes just too damned hard for many. And really who can blame them. I certainly cannot judge. Being a witness to this level of pain and suffering has given me a whole new appreciate of why someone would want to take their own life. I know this sounds shocking. And of course I do everything in my power as both a therapist and a Lyme advocate to help people find the strength to keep going. To find answers. To get relief. That’s my job and my calling. But even the strongest amongst us may give in to this level of suffering at some point. You are being held hostage to a disease that for some is unrelenting. Despite what the uninformed believe, suicide is NOT an act of selfishness or cowardice. It is an act of desperation, helplessness, powerlessness to change a situation that feels impossible to live with. Remember, many chronic Lyme sufferers are abandoned not only by the medical system but by family and friends as well. Imagine suffering with a chronic illness, alone - every day. You’ve lost your network of support, your livelihood, your income, your home, your life. And you’re sick every day for months, years on end. With no one who supports you. Those who are really sick often feel that there’s not much to live for.

CGO: You use a lot of powerful quotes throughout your book. One of my favorites is, “Grief does not change you. It reveals you,” by John Green. There’s such truth encapsulated in those words. Tell me how this personally resonated with you and Matt in your experience?

LD: Several months ago, I wrote a blog about my grief. In it, I openly talked about all the grief I have experienced in my lifetime. The heart-wrenching, soul-crushing, terrifying grief following the death of my father 31 years ago.

The deaths of all three of my grandparents. The loss of a dear friend whose kids were only 12 and 15 when cancer took her far too soon. There was the loss of our house due to financial betrayals. And the grief I experienced following my mother’s death two years ago after a 12-year battle with Alzheimer’s. We watched her life, her mind, and her bodily functions slowly disappear. So much loss. So much grief in my 57 years. However, nothing, and I do mean nothing, could have prepared me for the grief that I have felt since my beautiful son fell ill several years ago with chronic Lyme disease.

What is different about my grief this time, apart from being more palpable and simply unbearable on many days, is the new part of myself that I was able to reveal through this experience. A knowing that I am far stronger than I ever realized and that my son is definitely the strongest person I know. This time, with his blessing, I took an extraordinarily painful experience and turned it into something positive, my book Lyme Madness. I trust my book will help so many others who are just starting out on this journey, who are as bewildered as we were and as desperate for guidance. People, just like us, who are suffering and don’t know why this madness has befallen them and cannot make sense of it all. While there are no easy answers to this madness, I truly hope my book will help people along the way and open the eyes and minds and hearts of doctors, politicians, family members and friends of sufferers so that this madness comes to a screeching halt.

CGO: In Part I, I asked you what people could do to help your mission. What would you like to tell them to inspire action and real change?

LD: Yes. Please buy my book, share it with your doctors, get educated, don’t enter into any medical issues blindly, don’t be afraid to ‘google’ despite what your doctors say, think critically, ask a lot of questions, research, confront, take your health into your own hands. You are as intelligent as your doctors. Do not be intimated, blindsided, bullied. Medical treatment should always be collaborative, a partnership between you and your caregiver. Nothing less will do.

CGO: It’s been amazing learning more about your journey to help find a way to save your son, Matt. How is he doing today and what’s next for each of you?

LD: Matt is my hero. He has shown tremendous strength, perseverance, tenacity, and courage throughout. I often don’t know how he has done it. He is one of the ‘luckier’ chronic Lyme sufferers in that he has been highly functional throughout, able to work at a high-pressure job, and live his life. But make no mistake, it’s been a four-plus year nightmare for him – one that neither of us would wish on our worst enemy. When I say that he’s been ‘lucky’, what I mean is that there are so many chronic Lyme sufferers who cannot function, who are bedridden, wheelchair bound, on feeding tubes and more. It’s truly a living nightmare for so many.

CGO: In closing, is there anything else you would like to share with our readers?

LD: Please know that chronic Lyme disease is not just some rare illness that only affects people at a distance from you. Chronic Lyme disease is a pandemic. It is currently affecting millions worldwide. Please know that at some point it will affect you or a loved one. Do your homework. Then join us in our outrage at a medical system that continues to turn its back on the sick and infirm.

Lori Dennis, author of the newly released book LYME MADNESS, is a registered Psychotherapist in private practice in Toronto, Canada, and the mother of a chronic Lyme sufferer. Her book “Lyme Madness: Rescuing My Son Down The Rabbit Hole of Chronic Lyme Disease” can be found at Amazon. Lyme Madness was named the #1 NEW RELEASE in Immune System Health on Amazon. http://amzn.to/2fVkW7v

https://www.loridennisonline.com https://www.facebook.com/lymemadness/ for more posts and messages about chronic Lyme.

Catherine Grace O’Connell is a Fashion/Lifestyle Blogger and can be found at CatherineGraceO.com and on Instagram @catherinegraceo. On Twitter, you can find her @catgraceo and on facebook https://www.facebook.com/catherinegraceo/. She works as an Empowerment Mentor.

Lori Dennis, author of the newly released book LYME MADNESS, is a registered Psychotherapist in private practice in Toronto, Canada, and the mother of a chronic Lyme sufferer. Her book “Lyme Madness: Rescuing My Son Down The Rabbit Hole of Chronic Lyme Disease” can be found at Amazon https://www.amazon.com/Lyme-Madness-Rescuing-Chronic-Disease/dp/099516891.

Please visit www.lymemadness.ca. and https://www.facebook.com/lymemadness/ for more posts and messages about chronic Lyme.

Catherine Grace O’Connell is a Fashion/Lifestyle Blogger and can be found at CatherineGraceO.com and on Instagram @catherinegraceo. On Twitter, you can find her @catgraceo and on facebook https://www.facebook.com/catherinegraceo/. She works as an Empowerment Mentor.

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