TOUCHED BY LYME: "Welcome to the Lyme wars, Janessa!"

13th April 2011

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(Book review) Who knew the IDSA Lyme treatment guidelines could be fodder for a rip-snorting mystery story?

In OVER THE EDGE, the newest suspense novel from best-selling author Brandilyn Collins, heroine Janessa McNeil doesn’t know she has Lyme disease. At first, she thinks it’s a bad case of flu. Then things turn weird. Almost overnight, her symptoms careen wildly out of control. She has trouble walking, talking, thinking clearly, and sometimes even taking a breath.  Then she gets menacing phone calls from a man (a stalker? a terrorist? a nut job?) claiming she’s been infected with Lyme disease and threatening to do the same to her daughter.

Since Janessa is married to Dr. Brock McNeil, a prominent Lyme disease researcher, you’d think she’d have an inside track for getting to the bottom of all this. Not so. Dr. McNeil is nationally known for denying the existence of chronic Lyme—making it harder for Lyme patients to get treated and easier for insurance companies to refuse payment. Brock also wants out of their marriage.

So, Janessa must struggle alone with her worsening illness, her phone tormentor’s scary demands, her husband’s dismissal of her symptoms as a ploy to win him back, and keeping her daughter out of harm’s way.

Drawing heavily on her own personal battle with Lyme disease, Brandilyn Collins vividly communicates what Lyme symptoms can feel like:

“The tiredness is so….fierce. I’ve been pregnant. Had the flu. All the normal things that make you tired.  But this is like…you know those blankets they put on you for protection when you get an X-ray? How heavy they are? I feel like t-ten of those are on me. But not on me. In me. Wrapped around my lungs. It’s so hard to move. It’s like walking in a swimming pool…in water up to your neck.”

OVER THE EDGE deftly inserts factual information about ticks, Lyme disease, and the medical controversy over Lyme treatment into a riveting suspense tale. (Who knew the IDSA Lyme treatment guidelines could be fodder for a rip-snorting mystery story?)

In an author’s note at the end, Collins tells the reader, “I haven’t just studied Lyme disease. I’ve lived it.” She recounts the seed of this novel: during her own illness, she read articles where prominent Lyme researchers dismissed the complaints of Lyme patients, claiming Lyme was easy to cure. “What those know-it-alls need,” she thought, “is a real good case of Lyme.”   And so the idea for this novel was born.

Members of the Lyme community will get a kick out of OVER THE EDGE. And readers just learning about Lyme will vow to avoid tick bites at all cost.

You can read more about Over the Edge, watch a video about it and read the opening scene at www.brandilyncollins.com.

Blogger Dorothy Kupcha Leland can be contacted at dleland@lymedisease.org.

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Comments

17 thoughts on “TOUCHED BY LYME: "Welcome to the Lyme wars, Janessa!"

  1. This book saddens me as it portrays Lyme patients as pathological. The author is asserting her anger in a way that only further polarizes the two camps. I honestly believe that this does no good to moving us in a direction where chronic Lyme is accepted as real, and treatment is warranted. I've said this before about this book–there is a belief by many in that "other camp" that people claiming to have chronic Lyme are crazy. We are not crazy. We should not act crazy.

  2. This has generated my interest….
    My Dr said I had Lyme Disease. I Never thought that it could change my life, but it did.
    I cannot wait read this book!

  3. Lymepatient, you have read one piece of my whole story and have gotten a very wrong picture. I do understand your concern. But you have reached the wrong conclusion. Read the Lyme page on my web site to get a fuller picture of my experience with Lyme. Yes, once I was amazingly, miraculously healed. My second bout with Lyme years later was won by long-term treatment–the kind IDSA denies patients. My hope through writing OVER THE EDGE is to raise awareness about the plight of Lyme patients as they battle both the illness and the medical community. Blessings and health to you.

  4. I certainly don't get a kick of over the edge.
    I even wonder whether the author might have been paid by the IDSA for writing this book.
    See her website how she was cured of severe chronic Lyme disease, by god.
    This book makes that chronic Lyme patients do not taken seriously, when they suddenly cured by a miracle through prayer.
    My god 1-0 for the IDSA

  5. Christina, you haven't read the book and you are drawing an inaccurate conclusion. The book does NOT show Lyme patients as pathological. Dorothy

  6. With respect, but the position of chronic Lymepatients is already weak enough, because they are not believed and are put away as psychosomatic patients.
    The struggle of patients to be taken seriously, will not be won by commercialize the disease and by too much fiction.
    This will not work for patients in my opinion.
    Admittedly, you have idicated from one moment to the other you were healed by God and the second time by prolonged antibiotic, the second time gives opponents every opportunity to set aside as a placebo effect.
    It is how it is seen and assessed by opponents and will not work for patients, even though your intentions are good.
    When patients in this way seek attention for chronic Lyme, they will not be taken seriously and that is our goal.
    It is the overall picture that is issued, that the book contains good parts, does not alter this conclusion. Sorry but that is my opinion.

  7. Christina – what could be more 'pathological' than suffering from chronic progressive bacterial Lyme/co-infection encephalitis-encephalopathy, intense headaches, cardiac insufficiency, severe neuro-musculoskeletal pain, exhausting- debilitating fatigue, etc, diagnosed, "your symptoms are all in your head, you are Delusional-Somatic-type in need of psychiatric treatment."

    After misdiagnoses, denied prompt, proper treatment and/or insurance with progressive disability, alienation and isolation from (IDSA), even your own friends and family, who say, "you look fine" you are faking it, while barely able to walk, talk, eat or sleep."

    Chronic Lyme, co-infected patients suffer from bacterial Lyme/AIDS, like HIV/AIDS known to cause even death without prompt, proper, adequate treatment and vigilent followup w/ (ILADS) Specialists in severe shortage. even penalized and persecuted for saving lives.

    I have faced sudden unlawful removal, detainment and termination of my mother/daughters relationship, arrest, and incarceration for bogus-connived Munchausen's by proxy, used as a weapon in divorce w/ civil and criminal alby HIPAA violations (w/ self-incrimination), then (w/ double jeopardy) prosecuted for Delusional-Somatic-type Involuntary Commitment, with brutal, cruel ill-treatment, denied my right of choice of (ILADS) Specialists w/ unlawful Discrimination under (ADA) Title I, II, III, V (504) Rehabilitation.
    Thank you Brandilyn Collins and supporters!

  8. I do want to read this novel. Every patient is different with this disease and the co's. It may or may not be well received but perhaps this was another way of creating a blog only getting paid for it? Really, though, however awareness gets out there so be it. After I read it I will know more about the validity of it's truths vs fiction.

  9. I thought the book was fabulous – collins wove all the frustrations, pain, suffering, marginalization, and politics of lyme into a gripping suspense novel – she should be commended for capturing all of it so darn precisely. Obviously the two negative commanders havent read the book- janessa is not portrayed as crazy nor is she cured by god. Even if Collins had those two elements in the story – the book would be great – it's fiction, people & authors are free to tell a story any way they want. I commend Collins for choosing a depiction & treatment that most of us can relate to.

  10. I am looking forward to reading it. I totally identify with the summary. This book could probably be about any of us with late stage Lyme Disease, and it can go a long way toward educating a very ignorant public.

  11. "This book could probably be about any of us with late stage Lyme Disease".

    Sorry but this isn’t true.

    I come from Europe.
    I am a patient advocate and fight for better guidelines, more scientific research and solving the problems with Lyme. I know the difficulties with diagnosis and treatment by bad experience and many patients with me.

    So far we make good progress in our country.
    We stick to the facts, science, uncertainties and patient perspective. We try to ensure that we don’t lose ourselves in emotions and fairytales. We stay sober and with our feet on the ground.
    If you want to convince the medical world, make sure you have nothing to offer them that they can criticize with reason. That is asking for trouble.

    Not everyone has chronic Lyme disease, not all chronic Lyme patients cured, there are many unanswered scientific questions and persistence is one of the possible causes of chronic Lyme.
    However, within one hour being cured of a serious severe illness, sorry that doesn’t exist, contrary to chronic Lyme disease, that exists.

    When I read this text on the site below and the text in “my healing”, I feel ridiculed as a chronic patient, not taken seriously.

    I quote a bit below and see also “my healing” on the site:

    “Here’s the short version: In 2002 I became very sick with Lyme, but didn’t know what it was until I was diagnosed in early 2003. The sickness crippled me in mind and body. I could barely walk or stand. I stuttered when I talked. In time I lost the ability to read. I certainly couldn’t write my novels. I’d become mostly home-bound, with my quality of life gone.
    In May of 2003 God granted me a miraculous healing of the disease. After a special time of prayer, all symptoms disappeared within an hour.
    I remained completely well until 2009, when I was reinfected with Lyme. This time I didn’t get nearly as sick as the first time. It was difficult, but I wasn’t so debilitated. And this time—no miraculous healing. After about six months of antibiotic treatment I was well. I remain well to this day, still being careful to keep a low-sugar diet and get plenty of sleep.”

    I don’t take the text on the site seriously as a patient, and the website is promoting the book, so a doctor certainly not.

    If patients do not reach their goal, they would also have to look at their own part in it.

    I don’t heal in one hour miraculously from chronic Lyme, I wish it were true, such things happens only in fairy tales or with patients not as ill as they specify.

    Maybe this is a harsh view, but as a patient and patient advocate with extensive experience already thinking this about the book presentation and patient story,what about the people who have no experience with Lyme, but have to judge on the subject.

    Then also the acted movies on the site next to the text, when I see it, I think my God this puts the controversy in a weird light, not a serious light.
    I'm critical, but you have to be for patients when there’s a lot at stake.
    Don’t look with emotion to it, but with intellect and reason.

    Being right is something else in life than getting your equal.
    My advice would be if you want to be taken seriously as patients, stay by stories we and others can taken seriously and use clever strategy.

    Sorry for my criticism, but also as a patient, I believe that this book and the whole entourage with messages on the site is not going to work for us, in contrast to the book, cure unknown, for instance.

    It amazes me that I am the only one with Christina Lyons who sees this.
    I wonder what the opinion is of Lorraine Johnson in this.
    In my opinion she remains to science, evidence-based medicine and arguments who are not easy to refute.
    you can’t combat a fairy tale with a fairy tale.

  12. Thanks for writing this story. I confess that I've wickedly imagined some of my doctors or someone in their families being stricken by Lyme so they could know the disease up close. Perhaps your book will help more people understand it without an actual infective encounter. I wish you success.

  13. I am getting the book. My entire Southern California Lyme FB group is getting it. It is fiction. Maybe Ms. Collins was miraculously healed by God and that is HER story……
    I don't get when people are trying to HELP, there are always people that judge out there. This is the BEST we got, we're putting it out there. It may not be perfect, but it's OUR story….

  14. Lose the Drama! "Survival of the Fittest"

    Two polarized camps – One 'pathological' and thus, the other
    'right to be crazy.'

  15. Thankyou! Anyway, we can bring on more understanding, and make more people aware of Lyme..I thank you. Let's stop fighting and unite..I have Lyme, live in Pennsylvania, and have been fighting Lyme for over 6 years, and I give thanks to God and Medicine and good LLMDs for helping me with this illness everyday!!

  16. Although I have not read the book, I cannot wait to get it. My son has been fighting chronic lyme for 3 years. The issue I have is with the people who say that God cannot heal you in an hour. I have to disagree. 3 times during my sons struggle he has had miracles happen. The first time he had been in a wheelchair unable to walk for over 2 months when he heard God tell him to get up and walk. So he did, and never went back to the wheelchair. The second time he was having lyme related seizures almost 24 hrs a day. We were praying for them to stop when all of a sudden they stopped, never to return. The third time was the night he almost died from an allergic reaction to medication. He saw heaven that night and the throne of God. He came back crying because Jesus said it was not his time to be there and he had to return. My point is this God can do what he wants in his time. If the author says she was healed in one hour then we should be saying Praise God. The Bible says "by His strips you were healed", meaning Jesus already paid the price for our healing, if we only believe.

  17. I HAVE NOT READ THIS BOOK YET BUT LOOK FORWARD TO READING IT. LOOK WE NEED TO GET THE WORD OUT THAT LYME CAN KILL !!!!!!my husband and I HAVE HAD LYME DISEASE for the past 25 years!!! PENNSYLVANIA LEADS THE NATION with the mast cases of LYME DISEASE. LYME DISEASE SURPASSES AIDS AS AN INFECTIOUS DISEASE.792611

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