Silent No More, At Last I’m Free

I’ve always considered myself a very private person especially with regards to personal issues and my life as I strongly believe — personal issues are precisely that — personal. That said, I’ve decided the time has come where I can no longer remain silent. It is my duty as a doctor, a scientist, a writer, and most importantly as a human being to share my story.

It is my hope that by breaking my silence I might make a difference in someone’s life whether that person has been, or will be affected by the disease that has literally possessed my body for a the past 14 years. This disease is Lyme and I am battling the late stages of this disease — late stage-chronic Lyme disease. I was finally diagnosed with Lyme two years ago, but have been gravely ill from it for the past four, so ill the disease nearly stole my life on more than one occasion.

You may wonder why it took so long for me to become diagnosed. Well, therein lies a large part of the problem for those of us who suffer from this illness. It is a silent killer. Lyme (Borrelia burgdorferis) is an infectious spirochete bacterium spread by ticks. The spirochete is a coil shaped bacterium which differs from all other bacterial infections known to man, except for one, its cousin Syphilis. Spirochetes spread via the bloodstream cross the blood brain barrier where they penetrate the joints, heart, eyes, kidneys, nervous system, bones, other organs, and distant skin sites where their presence gives rise to the variety of symptoms of disseminated diseases. The spirochetes persist in the body for months to years, either in a dormant stage or in a very active stage where they feasts off the body in various locations giving rise to countless symptoms. The disease essentially mimics nearly 300 other known diseases among them multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, Crohn’s disease, HIV, and other autoimmune or neurodegenerative diseases.

This insidious disease so severely altered my life it devoured my very spirit as it slowly ripped away my soul layer by layer until barely a grain remained. And when it cast its last spell, I was but an empty shell and nearly lost the battle and the will to fight. Not only had this disease destroyed me, it had deeply affected the lives of those closest to me, my family, and most definitely my husband. A man who had most gracious cared for me through the most difficult days, months, and years of my plight, and who hopelessly watched as this sinister disease tore away every ounce of the vibrant, intellectual, and humorous woman I once had been.

As this disease consumed me, slowly, most silently, and ever so painfully my friends and all whom I had loved, abandoned me. In a world of isolation, I hid in my room surrounded by my two little black dragons, Lady Morgana my guardian spirit who never left my side, and her brother Mr. Perkins a metro-sexual tux with an attitude and penance for pink. It was there I felt safe. And it was there I entered a deep dark world I created, fantasyland a place where I wrote wildly in peace and utter desolation. Most often I would lay in the dark or at night away from the sun’s damaging rays, which wrecked havoc on my eyes and skin. I lived isolated and bedridden with a computer on my lap, where I delved deep into the fantasy world I had created in my mind and one which would become the foreground of my novel ‘The House of Thoth’. Days and then months passed. My condition deteriorated. Yet, I was determined to complete the series before I died. My writing was what bound my last strings of hope together. This disease had not only taken over my body but it began to devour my sight, my mind, and worse my soul. It had stolen everything from me, or so I believed.

While my husband most certainly was the person who saved my shell from being crushed, it was someone entirely unexpected who saved my inner being and helped me to regain my will to fight. It was with the help of someone so unique and special who entered my life at the most critical and crucial time for me.

From the moment this woman entered my world I could see she was different. I felt it deep within me. Her aura shone so brightly even a skeptic would see who and what she was. Some would call her an angel, a spirit from the gods, but I called her the one who saved my soul. The lessons of that day were some of the most profound I’d ever experienced and some of the most important of my life. We are all born with the same mechanisms inside of us, however it is how we choose to develop these devices that matters. Every human being on this planet has the power to control his or her own destiny. No one can control it for them. This bright spirited woman helped me find myself again through her guidance, power, and strength, and I am eternally grateful.

That day, and the days, which followed changed me. The truth behind my silence among other things became clear. I had been embarrassed. I allowed my career to define me. I was living the dream. I had it all, the life, career, money, great friends, everything or so I believed. Until the day, my entire world crashed. The day when I realized I could not longer perform my job in the capacity I had, with integrity, honesty, and pride. I was mortified and it terrified me. The strong tenacious woman I once was, she was gone. I could not allow myself to appear weak, fragile, or human.

During the time when I had regained my sense of self, I came across a blog post written by a woman who had Lyme disease. I read the article and at the end, I was compelled to read the comments. I was astounded by the number of responses from people who had Lyme disease or were in some fashion affected by the disease. Hundreds. I read each heart wrenching account, which ripped at me such I realized I had to do something.

No matter how much this disease shredded away from me, I no longer could sit idle and watch, as so many people’s suffering far surpassed anything I had endured. I had discovered my voice. I had cracked the code. I had been blessed with the ability to write and to understand the science behind the Lyme bacteria, which I continue to battle in its late stages.

I understood the disease better than the doctors I sought treatment from. While I knew in my heart I had Lyme disease. I listened. Repeatedly, when informed I was wrong. I’d been belittled and patronized by the same condescending doctors who allowed their ego and prestige drive them and not the very oath for which they swore to uphold. Piece-by-piece these doctors destroyed me exactly as Lyme and the many co-infectors had damaged my entire being. These ‘so called’ professionals shattered my intellect, which in most instances matched or even far surpassed theirs. It mattered little. They tore me apart with each ridiculous diagnosis they could throw at me.

Yet through my research I discovered the ugly truth. None of which is a secret within the Lyme community. But for those who are not, it is a sad and horrific reminder. Me, along with every person in this country, and those in other parts of the world affected by this disease all know — we have been lied to. It is so profound in and of itself, yet it is something that must be addressed and the entire world needs to know the truth. Lyme disease is a pandemic. And issues run rampant in how the disease can and is treated. Trust me when I say it’s disgraceful.

Last year the Centers for Disease Control and Prevention (CDC) announced Lyme disease is much more common than previously thought, with over 300,000 new cases diagnosed each year in the northern and mid-western United States alone.[1] This number is roughly 10 times higher than the officially reported number of cases, and strongly suggests the disease is vastly under-reported. This figure also indicates Lyme disease is almost twice as common as breast cancer and six times more common than HIV/AIDS[2]. As of this article, the CDC has yet to change their website to update the reported number of Lyme cases in the US. Thankfully, the statistics have been voiced for the world to hear, despite the CDC, and the Infectious Disease Society of America (IDSA), among other agencies efforts to hide them.

Accurate information about Lyme disease has been kept out of almost every website in the US unless one knows where to search. While this disease can be treated, if detected early, chances of a cure are slim. The best one can hope for is remission. I will expand on the efficacy of treatment and options, the disease itself, its many co-infectors, the importance of nutrition and the healing process, and resources and reference materials in future posts. I’m in the process of completing not only my fantasy series, ‘The House of Thoth’, but my current work in process which details my personal battle with Lyme disease in ‘My Life With Lyme’, which I hope to have published late next year. As my battle from this disease is far from over. I struggle each day from the confines of my bed, in total darkness. So work on both projects have slowed considerably. That said, at least now I have regained my drive to persevere.

I know from experience many of you will turn away as you believe Lyme disease does not or will not affect you. Please don’t. The truth might some day be more relevant to you than you might think. Lyme disease is present in every state. The more you know the more you can do to protect yourself and your loved ones from this disease. The truth awaits you.

 

[1] CNN reports 2014

http://edition.cnn.com/video/data/2.0/video/bestoftv/2014/05/23/sgmd-lyme-disease.cnn.html

[2] Dr. Joseph G. Jemsek, MD, FACP, Jemsek Specialty Clinic, JemsekSpecialty.com

 

32 Comments on “Silent No More, At Last I’m Free

  1. When the brave stand up and speak, the truth is usually heard.

    Thank you, Louise, your inherent ability to shine reaches right across the world like a beam. Although, Lyme is not the same name of the devastator whom I have fought, your warm ray has found a familiar resting space here. I am confident it will find a myriad such places of rest all over the world and when rested this light will reflect again and again to dazzle in sooo many ways…. 🙂

    May you keep looking upward and outward…. much love P

  2. I am so sorry to hear this Louise. I was bitten by ticks a few years ago and asked my doctor to test me and he wouldn’t, because he said there is no Lyme disease in our area. We live in Eastern Ontario and there’s lots of it in the dog population. We had one dog diagnosed with sevee Lyme a month ago, and another with mild. Both are on medication. The veterinarians have a much beyter handle on it than the medical doctors. It’s supposed to be so hard to diagnose, but the vets have a little indicator for the blood. I was very concerned when our dog was diagnosed with severe Lyme. He had a sudden onset of swollen painful joints, which is why I took him to the vet. I didn’t expect Lyme, because he had had a Lyme vaccine. Anywzy, I went to my own doctor with news that my dog had severe Lyme and told him that the same ticks that bite my dog are biting me. I generally get them off pretty fast, but I have wakened up with them on me. Revolting. So I did do a lot of researvh on Lyme. At one point our health system wouldn’t test us. They requested the head of the tick that bit us and would test that, but a human being full of Lyme and standing in front of them, they wouldn’t test. But the doctor reluctantly gave in and tested me. Said the results were difficult to read and would be inconclusive. My results were negative and I was greatly relieved. My husband was reading about Lyme in a Quebec magazine. Apparently there’s a lot of it in Quebec, and the doctors are not good at diagnosing or treating it. They could learn a lot from the vets who have been fighting it for years. When I was at the vet’s with our second dog being tested, there were three other dogs ahead of him who all tested positive for Lyme. I can believe that this is a pandemic. The pity is, if treated early, very early, it ks completely curable. I would be very interested in reading your book and hearing your story. It’s definitely time the news got out.

    • Thank you Louise for sharing with me. I am sorry you were bit. My recommendation to you is to be persistent with your doctors if you begin to feel symptoms of Lyme disease, fever, chills, sweats, joint pain, any other symptoms and maintain a log of those symptoms as many could in fact be symptoms of Lyme disease. I was treated after both tick bits with 10 days of antibiotics which is no where near long enough. That and the antibiotic was not the recommended type for Lyme. While the initial symptoms passed, it was probably a year later I began having cardiac problems, followed by a trimalleolar fracture to my left ankle. In other words, I shattered my ankle severely, which would lead to four surgeries. The last one, a bone graft to repair a golf ball sized hole which had encysted in my tibia. Had I not been persistent with doctors their was something wrong, I would have lost my leg. That, I my cardiac problems continued to where I was being cardioverted several times a week over the coarse of two months which ultimately would lead to three surgeries to correct an electrical problems in my heart which continue to this day. Short version of story. Both the leg and my heart problems a result of Lyme disease. Cardiac problems the first symptom of chronic Lyme. Neither of which were caught by doctors. At the time I was living in Connecticut and working in the heart of Lyme country in Dutchess County, New York. Dutchess County has one of this highest incidences of Lyme disease in the country. It was interesting as many of those with whom I worked closely with had Lyme disease or knew someone who had.

      It saddens me that your dogs have Lyme. At least the vets in your area are familiar with treatment. There is no vaccine human or otherwise that will treat Lyme. Doctors may tell you there is, it is a lie. The vaccine that was on the market for a very short duration was pulled due to falsified lab results. I feel for your dogs as they must be in agonizing pain. It is one of the most painful illness. I will elaborate more on this in upcoming blog posts and of course my book. Take care, and promise me you will get treatment if you begin to feel ill. Or at the very least contact me so I might be able to tell you what you tell your doctors you need. And know this important fact. Not all patients who have Lyme have tested positive for Lyme. The tests they have out only pick up maybe 20-30 percent of cases. Most will test false positive. The tests were never intended to be used to diagnose Lyme disease. Long story. Good Luck.

  3. Thank you for sharing your story, Louise. What an eye-opener for this Cali girl! Having worked in Big Pharma for over 15 years (recovered now, thanks), it does not surprise me in the least that the numbers reported are low.

    I commend you for your honesty. Writing the hard stuff is just that — hard! But think how much you’ve educated people already. My hat is off to you.

    • Thank you Rachel. Your words mean the lot to me. It was indeed a very difficult post to write. That said, it was important to get the word out Lyme disease is a serious problem, one which affects people indiscriminately. The CDC and IDSA, big Pharma are lying to people. Lyme is a not merely a national pandemic, it affects people all over the world. It is time the madness stops. I am determined to shake, rattle, and roll heads in order to help those like myself and others who suffer from this insidious disease.

    • Thank you Rachel for your comments. I apologize for not responding sooner. I thought I had but a foggy mind is one of the symptoms of this disease. I have good days and very difficult ones. Some days I feel like Forest Gump, I never know what I am going to get when I wake up. It has been a difficult road and one that is far from over. Thank you for your kind words and continued support. I am grateful.
      Louise

  4. A story more harrowing than any I could conjure. Thank you for it, Louise you are a brave woman. I live in the Peak District of Derbyshire, England and if we have anything, we have sheep. I’ve been bitten many times by the sheep tick, but without – as far as I’m aware – any consequences.

    I spoke to my local GP today about the incidence of Lyme’s and she said there wasn’t an ‘incidence’, that is is an incredibly rare disease, but on investigation I found this to be less than truthful. Why there would be a conspiracy of silence I have no idea, but I can guess that treatments are available for the illnesses it’s not and, as you know, medical professionals love to be able to offer a solution, even if it’s not the right one to the actual problem.

    • Thank you J.D. for your comments. I will be addressing more on the issues you raised in future posts. I will say and I mean no disrespect to your GP, but she was highly irresponsible in her comment to you. Lyme is indeed everywhere including Great Britain. And it is a pandemic.

    • Thank you JD for your comments. It has taken a while to respond as it takes a certain mindset to approach this issue, even though I live through it on a daily basis. My life is a roller coaster and I never know from one day to the next how I will feel. And I must tell you from someone who is a planner and a very active person, it is a very difficult dilemma to confront.

      You are correct, there are many untruths spread about Lyme and it must stop as it affects entirely too many people for it not be recognized for what it truly is — an epidemic which has turned into a pandemic due to the failure of our medical system and the hidden truths and denial of an actual problem. I believe in part it is because the government has no idea how to approach the problem or resolve it as it has spiraled out of control far too long.

      I hope to address some of these issue in the future, for now I merely must be patient, listen to my body and do what I can allow the fog to lift and improve enough so I can write again. Thank you again for your kind words and comments. I apologize for taking so long to address your comments.
      Louise Edwards

  5. Thank you for this post, Louise. What an eye opener, and such humbling words, indeed….

    I’ve had breast cancer twice, and people tell me all the time that I am brave for going through that. But here’s the thing – and I know you will understand this – we have no other choice but face it all head on, do we? And another thing, yes I had cancer, but after surgery, chemo, rt, & hormonal therapy, I am living a normal life. These merely took 2 years of my life…and it is totally not like I live with a condition like you and all other people with Lyme do….

    Shifting the focus – that’s what’s needed. People like you to stand up and speak, to tell of your reality without sugar coating it yet also without making it into a drama fest – thank you for this! We need more people like you in this world.

    (btw, it’s Zee Monodee. The ID is from my editing site 🙂 )

    • Thank you Zee for your comments. You are also a very courageous woman for speaking out on your experience with breast cancer. I applaud your courage and strength for not allowing the disease to consume you, but becoming a fighter and a survivor. You are also correct in that shifting the focus is what is needed when dealing with life-threatening and/or chronic diseases. Sweeping such conditions under the carpet is simply a cowards means for dealing with the mounting problem with many diseases the public faces today and the very stance the CDC and the Infectious Disease Society of America (IDSA) have taken. I will be discussing this issue and more in future blog posts. Thank you again for your comments.

    • Thank you Zee for your comments. I am sorry to hear of your breast cancer, and twice. You are a very strong soul. I am very delighted to hear you are living a happy normal life. It is difficult to overcome the disease but also the isolation and habit if you will, of being sick for so long. I live in a world of roller coasters and whirlwinds. No day is the same and no prediction can be made to what each day will bring. That said, I am becoming stronger each day when compared to where I was a few years ago. I have a long road ahead, but I soldier onward. I have too many things in my life I want to pursue and achieve. And I have every intention of speaking up, especially for those who have lost their voice. I have never been known to sugarcoat anything or one to walk into or perform in a drama fest. It is not my style.

      Shifting focus. I look forward to working with you on my projects. 😉 We divas must stick together. Cheers!
      Louise Edwards

  6. Wow, you are such an incredibly strong amazing woman, thank you for sharing this, it must have been so hard to write with the emotions flooding through you. Just by reading your post I have learned more about this terrible disease than any public interest story or newsprint article. It is through your strength and the strength of others like you that we will all understand more about and bring a greater awareness to diseases like Lyme. So incredibly humbled to know you my friend. @laurienotlori

    • Thank you Laurie for your comments. I am glad you found my post beneficial and informative. If it helps even one person become aware of this disease or understand more about it, then all the pain was worth while. It was indeed a difficult piece to write, but I felt it was necessary. I could no longer sit idle and watch so many people suffer from a disease that is being declined the necessary attention from the medical community, the Center for Disease Control (CDC), and the Infectious Disease Society of America (IDSA). People are suffering and are not receiving the medical treatment required to put this disease into remission. The madness has to stop.

  7. An amazing, and scary story. I’m pleased you found the courage to share it. It needs telling. I wasn’t aware of how insidious a disease Lyme is. I wish you well on your journey. May there be good days ahead. 🙂

    • Hi Norah, Thank you for your comment. It was a difficult piece to write. I will be writing more in the coming weeks and months, as time and health allows. My life is like living in a rollercoaster with peaks and valleys. I’m hopeful the valleys are not as deep as they once were and the peaks continue to rise. Unfortunately, I only know from day to day, and with that I take life one day at a time. To plan, I have learned the hard way, is something I simply cannot do or commit to do. Thank you for reading my post and capturing a mere glimpse of what it is like to life with this disease. The more people become aware, the more that can be done to see to it we can receive the proper treatment from doctors who know and understand this disease and how it not only affect the person with it but those around them as well. All we can do is battle and persevere.

      • Be strong and look after yourself. I have seen recent articles here in Australia about people suffering in similar ways, though the disease is not recognised as being here at all. It is very difficult for them without medical acknowledgement or treatment. Take care. 🙂

  8. Keep fighting. I knew very little about this horrible disease before reading this. What you said about doctors, however, is sadly no surprise. I hope this angel who came into your life is still with you.

  9. Hi Louise, I’m so sorry to read about your experience with the illness. My husband has it as well. He was diagnosed last year and did the three weeks of antibiotics or whatever, and when the major symptoms (joint pain) went away, we thought it was done. But then things started to sporadically plague him again, so after a year, he finally went to a naturopath. She had him tested for the full spectrum of tick-borne diseases (because apparently these things like to “buddy up”) and ordered tests which she said are 98% accurate (we’d also heard about the high number of errors in the standard test). Sure enough, in addition to Lyme still being present, he had two other tick-borne diseases as well. He’s back on antibiotics, plus several other supplements and things to boost his completely trashed immune system.

    What I don’t understand is the medical establishment’s resistance to testing and treatment for Lyme. My husband’s doctor agreed to the standard test last year (and ran it twice, actually; the first time it came up negative), so we were lucky. Plus my husband is from Massachusetts, so even though he was bitten in WA state, he had a hunch. But I’ve heard so many stories — especially in Canada — of doctors refusing to test for it, and even saying they’ll get in trouble if they treat someone for Lyme. I’ve heard of Canadians coming to the U.S. for testing, too. I’m from Canada originally and usually our health system is pretty transparent, but there seems to be a big shroud of mystery around Lyme, and I can’t even begin to guess why.

    Wishing you the best.

    • Thank you Laura for your comments. I am so sorry to hear about your husband. I understand your frustration all to well as I went through much of the same. It is good news you live on the east coast, now that New York has finally passed the bill that no longer forbids doctors from treating patients with Lyme disease. He is also one of the lucky ones (which is relative here) who is receiving treatment early. It took me over 12 years to receive treatment, and unfortunately it has impacted my heart for which I have had to undergo three operations and nearly died from complications following the last procedure. I too have several of the co-infections affecting my treatment but also viruses. And now the viruses are causing many problems. It is a never ending cycle, one for which I hope will at least go into remission. I will be posting in my newly formatted blog in the coming weeks, finally. So I hope you check back there might be some information which may help your husband. I will mention one key factor crucial to wellness is modification of diet. When I was forced to change my diet, I was amazed by how much better I felt in at least one region of my body. Take care, tell you husband to keep a positive attitude no matter how horrible he feels. It may sound silly, but attitude plays a tremendous role in getting well. I go around saying to myself, “Happy thoughts! Happy thoughts!”

  10. Such a moving post. The lies are deep and seem insurmountable at first, but I applaud you for speaking out. The light of truth shines more brightly when we refuse to protect the lies by doing just that – speaking out. I’m so sorry for your struggle. I, too, have been on the Lyme ride for a number of years. Like you, I refuse devastation. Whatever Lyme has chipped away must reveal a treasure below – that’s the only way I can do this – it gives me faith in every day. Sometimes I become discouraged, like now as I head into relapse and anticipate re-treatment starting next week. But, even that gives me more incentive to reach out and lo and behold I find others who understand, and who walk the walk. No matter what point in the journey I am on, I miraculously find others who have been there before me, and in some way those who might need something I have to offer find me. And, that’s how I found you and this post… somehow our twitter paths crossed. Isn’t that funny? At first glance Lyme is very restrictive, but maybe it is also expanding us? Good luck with your journey, and good luck with your writing. Wellness comes in many forms. May you be well. and happy. Thank you so much for sharing your story. 🙂

    • Thank you Donna. It is a hard subject to talk about because it is so very personal. But it is a topic that must be addressed as too many people are becoming ill and the numbers continue to increase, and no one seems to want to acknowledge the problem. For me that is the most frustrating part of Lyme disease is why is it so difficult to give the person antibiotics, when Doctors hand them out like candy when someone has a simple cold and the Doctor has no idea if it is caused by a bacterial or viral infection. Lyme is pretty clear-cut. Person gets bite buy a tick has the symptoms, or maybe they don’t remember getting bit, what does it hurt to rule out this disease before jumping to the conclusion is something, which might mimic Lyme but lets rule Lyme out by giving the patient antibiotics for a month or two. If the patient isn’t making progress then another treatment plan may be necessary. The more people who become aware of Lyme disease and start questioning their doctor will go along way in the fight. Always question the Doctor. Don’t settle on a diagnosis that can have a tremendous impact on your life. It does help to know others suffer from this disease but it also gives meaning to the facts something must be done. If the status quo continues there could be an entire generation wiped out by this disease. And for the CDC to lie and say its not a problem, when the numbers increase so dramatically, yet they scream and shout over a few cases of the the flu, or measles. While I don’t discounts the severity of these illnesses, isn’t Lyme as severe?

    • Thanks Donna. I needed to read this now and again. My Lyme brain vaguely remembers seeing your post and sending off a reply. I hope you are doing well. I recently had heart surgery, most likely a result of long term affects of Lyme disease. I had been ill for months prior to this final episode. Sad to think. Everything is blue or gray depending on the day, and try to thing everything full of sunshine and roses. That is what keeps me going. 🙂 xx

  11. I admire your courage to write about your illness.I have had numerous life threatening illnesses including cancer,heart failure and a 36 hr coma/stroke.I am writing my memoir and the questions keep on coming why it is not included.The truth is I cant talk about it!

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