Our Suffering With Chronic Lyme Disease – Will I Kill Myself?

Our Suffering With Chronic Lyme Disease - Will I Kill Myself?

When you suffer for days, weeks, months or even years…with pain that will not stop – or with fatigue that is so profound, you feel like a corpse (not a walking corpse because you are so weak you can barely struggle to the bathroom – no, it is a prone corpse).

You think about suicide. Let’s face it, we all have thought about it when the pain and suffering overwhelms us, and we feel there is no one who cares or understands.  Friends try to relate but inadvertently make it worse when they compare their frustration over being bedridden over a 3 day fever or a pulled muscle in their neck.  “Oh, I know just how you feel…” they may say, “I had a migraine once.”  

Or worse is when you explain the drenching sweats that leave you dripping wet with shakes and stabbing neuropathic pain that attacks random places at random times and you are told, “Well, it sounds like menopause…” Hmmm.

And in the dead of night when the pain and insomnia keeps you awake for hours night after night you wonder who would really miss you. What value does your life add to your family?

Recently Lisa Hilton from “WhatisLyme.com” at http://whatislyme.com/lyme-and-suicide-a-problem-ignored/ published her story on CNN’s ireport (please register and comment at http://ireport.cnn.com/docs/DOC-1037462) which includes a beautiful You Tube tibute to so many who have lost their lives to Lyme disease, and she points out a list of reasons she sees suicide as hard hitting those of us with Borrelia:

Hopelessness by lack of educated doctors; Isolation, Debilitating Symptoms, Lyme Causes Depression, Feeling Like A Burden, and Watching Other Friends Die.  To quote her words on isolation:

“Being that doctors have a hard time accepting Chronic Lyme Disease as a real disease, this trickles down to the families and friends of Lyme patients. Patients are constantly questioned by their own loved ones as to why they are not better with treatments, why their symptoms come and go, why no tests show Lyme Disease. Lyme patients start to lose everyone around them and feel isolated.

There is also the aspect from the families and friends view: “I don’t know what to do, or how to help?” Friends and families stop calling because they simply don’t know what to do. They don’t know how to help someone who’s doctor doesn’t know what to do. It’s hard for people to feel helpless. It’s easier to avoid the situation then to sit there not knowing what to say to the sick person.”

I know we can all relate to those words (and the rest of the article as well) – it is common for me to hear people confess their dark thoughts of taking their own life – and for me it resonates as I have wrestled with those very same thoughts.  Especially when I found out that my number one support and the love of my life, my husband of 20 years, had given up on me and started having affairs…pulling away one lie at a time.  Can I blame him?  No, he was living with a sick shell of the woman I once was – having to care for me day in and day out…our caregivers need support groups just as bad as we do!

My point is that being sick is depressing all by itself even with the added symptom of the disease.  It is easy to lose hope when you can’t work – I know some manage to stay employed but truly employment can give a positive focus where none exists in those lonely hours of struggling with pain all day and night.

But there is hope and here is my list:

Suffering is a blessing – it makes us stronger.  As much as I resent this statement, I know it is true.  The German philosopher, Friedrich Nietzsche is quoted as saying “If it doesn’t kill you it makes you stronger.” (That is the question, right – will it kill you?) Suffering is a gift from God or the Universe or how ever you view the Divine…the gift is the compassion that comes slowly but surely, and grows to fill us with the power of love and understanding. We are the best friends for others who have Lyme because we can understand.  So please, reach out to someone you know with Lyme.

Serving Others Gives Purpose When All Else is Gone. Even if it is one person we call on a regular basis…that may be saving a life.  That love and compassion might make all the difference.  And while we lend support to others we feel a soothing balm in return that may not fill the void but certainly pushes back at the darkness.

We Have Hope of Recovery. I don’t agree that there is no cure. I am slowly recovering with some set backs, sure, but I am recovering and there is scientific evidence that shows us why it has been persistent, and thanks to researchers like Dr. Evi Sapi and others, we can find a strategy for fighting our disease and gaining our life back.

If we don’t give up, we won’t ever fail. We need to support each other in actively pursuing total recovery.  There are many protocols for treatment and unfortunately it becomes a fignting ground for some who feel that “their way is the right way.” I think that some are suffering from a rage symptom that also comes with Lyme.  I have come to that conclusion because the rage from some of these “fighters” is way out of proportion to the issue at hand and circumstance (forum, blog or Facebook) – if you have spent any time in one of these areas you have probably bumped into someone like this. But remember, they need compassion too.) My point is that each of us has a different bacterial soup, a different lifestyle and immune system, not to mention the variety in pain tolerance associated with different protocols and other health complications.  Our treatment belongs in the hands of a trained doctor, not with the opinion of people in a forum or on a blog.

A simple exercise/tool my therapist suggested for fighting this dark compulsion to give up, is to wear a rubber band on your wrist and snap it hard when the thought begins to take over.  It brings the situation to the front of your consciousness. and gives you the opportunity to actively choose a positive thought.  It is not easy, but it is possible.  And the choice to direct our thoughts when everything seems out of our control is a valuable exercise, not only for eliminating suicide as an option, but for regaining hope, happiness and the determination needed to recover completely from chronic Borreliosis.



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14 Responses to Our Suffering With Chronic Lyme Disease – Will I Kill Myself?

  1. Sedona-Lymie says:

    Jenna, you could be writing about my life! While it wasn’t meant to be funny, I laughed at your description of friends who try to relate to this disease. It was so true that it struck me as pretty hilarious.

    You are a remarkable writer. Thank you for putting into words what many of us feel.

  2. jax says:

    Hi I’m an Australian 47 yr female who once had friends family a job and now I’m a lone having to sell my house because of growing bills due to being diagnosed ‘chronic Lyme’ over a year ago. I thought I was cursed for years with a dark black force that was smothering my life. Everything I touched went bad. So I do understand the grief of wanting to end the gloom and pain and the feeling of doom and no hope because everyone in your life has abandoned you because they think you have massive mental issues! Many times I have wanted out of my miserable existence of late. I’m alone, broke with no real medical help and watching the effects this has had on my body which are so surreal and unbelievable. So I do feel like a freak, not a normal human, my body has transformed and reacts to this poison in a unnatural inhuman Manor. I try to keep in mind I am a wonderful person that is doing the very best she can to try and extract this heavy cocoon of a poison out of my body. And it is hard for any normal person to grasp let alone me! So someone has to keep a level head until education and a world wide cure for all stages of Lyme is recognized and if I end it now I may stop the link to help someone live a better life than I have. My secret weapon in fighting the bioflim is lemons ! The rind chelated the poison and sucks it out of my drenched biofilmed skin. I am heavily coated with this bioflim that it has transformed me. My hair is not my hair, it is pseudo hair that has no roots and if I leave it just keeps consuming my face.ie my hairline grows thicker and moves down my brow and takes over my face if I let it. My nails have gone. I’m left with a thin shell of what we’re once strong long nails never bit en in my life. My skin has darkened with a Grey greasy tinge. But now after bathing in pureed lemons for the past 6 months I can actually see a break in my skin where I’m winning the battle and the bioflim is disappearing leaving my normal freckled pink skin behind. My skin change was the only good thing .The bioflim protected me in the sun and I went so brown everyone saw me as a naturally dark skinned person which I am not. That I miss the forever tan I had but now I am back to being pale and sunless looking again. Which is normal! So I do get it I thought I was turning into some dark scarey creature of the night -poor eye sight , insomnia, growing extra hair on my head , turning a darker skin color loosing my nails… almost a human under a human I felt like.. The outside shell was not the real me.. The bioflim is literally smothering me out .Now I understand it a lot better, I can live with myself a lot more now not worrying about all those who have abandoned me in my time of need and i have decided to rebuild me and a better life once this is all over… I will beat it , alone if I have to. Because if I top myself now it confirms my mental state and all my nonbelievers will feel they were right! It is my pledge to myself to beat it and get a life back . Not let it defeat me before everyone is aware of how horrible it is to suffer from Lyme! Hang in there prove Em all wrong…do what u got a do to survive but do it and don’t ever give in to the disease because of unkind misunderstanding people we call friends and family! Click your heels petal.. i don’t tell anyone now I just say I have skin and health issues no biggy , I am accepted a lot better now because I’ve stop trying to convince people my body is weird and I need help! I help myself now, it’s hard but I get there knowing I did it and will keep my head up high for as long as I am alive!

    • Jenna Smith says:

      Great Comment!! Those of us in the US complain about no LLMDs when you Lymies in Australia have to fight to be believed it even exists in your country! I am inspired by your courage and fantastic attitude! I think many who give in are suffering from neurological Lyme in addition to the hopelessness of fighting a chronic illness that causes such pain…


  3. Peg says:

    Jenna I am so sorry you are suffering with the addition of your husband’s abandoning you. Or so it sounds. I have respected your blog and content for years now. I hope that there is someone soon to replace the support you deserve and need. It is truly isolating as you say. The hardest work ever to heal.

    • Jenna Smith says:

      Thanks Peg!
      I am so blessed to have a wonderful and generous daughter to take me in…especially in light of Heather Askeland, who recently took her own life as a result of being abandoned. She was suffering from a relapse … I am hopeful to recover permanently but certainly the neurological aspect is the scary part of the disease that puts you in those dark places taking away your natural mental clarity that would normally stop you from stepping in front of a train.

      Her death makes me feel as if my problems are insignificant but at the end of the day we all have to decide what we can live with. I never thought my husband would abandon me. A good “Christian”, 4 years of lies and adultery – he was my best friend and I never had a clue, no, I should say I was understandably distracted!

      Thanks again for your sympathy!


  4. Melissa says:

    Hi Jenna, I can absolutely relate. My husband and I have talked at length about how Lyme robs one of the will to live and easily includes the dark, beating wings of the thoughts of suicide. At this point in our journey, those thoughts are behind him, but we just heard news of another young girl, left homeless and abandoned by her family, who recently took her own life. This is far, far too common in the Lyme community, and you’re right that too many of our friends and family find it impossible to relate, despite their best intentions and efforts. Your blog is beautifully written and, believing that we present a stronger message when we are connected, I would like to link your blog on my own. Would that be alright? Feel free to email me, if you prefer to have a deeper convo offline.

  5. Tina Jessup says:

    Thank you so much for writing about this much needed topic. Ironically, I wrote a post about my own feelings of hopelessness last Friday morning (http://chronicallyundiagnosed.wordpress.com/) and late that same day received my test results from Igenex that were positive for Lyme. I’ve been in and out of a state of disbelief since that moment. Finally after four years I feel vindicated. My sense that something was driving all of my debilitating symptoms was revealed. And yet, the future is filled with uncertainty. What will treatment entail? How long will it take and at what cost? After a year out on medical disability I was let go from my job and at present have no income. Just a few thousand dollars separate me from being insolvent. There are medical bills piling up. I constantly worry about how I will provide for myself and my son when my symptoms continue to leave me too ill to work. And not working is also a huge part of the problem. Without the structure of work and the ability to step outside myself by helping others my mind is whirring non-stop in a maze with no discernable exit. How will I survive when the treatment makes it worse? So many questions in a sea of uncertainty. All rhetorical, of course because this illness affects everyone differently. And each person responds differently to treatment. Will I be like Amy Tan, who after 6 months of antibiotics was able to say “I have my brain back?” I had long since given up on the possibility of ever attaining my previous healthy state. A once able body without the daily need to keep on top of symptoms of pain that once set my brain on fire. I’m working on accepting this new reality. Everything has changed. Finding my old sense of humor, finding meaning and purpose in this diagnosis, and helping others in some way is the only path I know to recovery and or survival. To all who are suffering, Namaste.

  6. loretta facelli says:

    scusate italiana io sto cercando qulcuno che m aiuti a morire non ho speranze diagnosi dopo credo 14 1nni i miei sintomi sono molti più di quelli qui descriti preso vescica intestino distrutto parassiti forte candidosi credo di essere uno dei pochi casi al mondo e neuro lyme la mia vita non esiste più o la mcf elettrosensibilita celiachia adenoma fegato ipotiroidismo e non posso tentare con gli anitbiotici nemmeno provarci poi ci vorrebbe troppo tempo e sono ormai attaccata in tutti i muscoli i nervi le ossa ho pregato infinitamente la madonna infinitamente per avere una diagnosi ma e arrivata tardi sono intossicata da antidolorifici che non mi fanno più niente ho n adenoma sul fegato il pancreas funziona male vomito non so se il nervo vago ho stimolo continui defecare e urinare poi in italia sono immobilizzata non potrei venire in america son piena di batteri in bocca e nel resto ho dei virus non ben definiti cellule invecchiate di 15 anni e non so perché sono viva mia madre e marito disperati e amici disperati questo non e tutto ho tentato con argento colloidale ma non funziona e integratori ma peggioro chiedo la morte ogni giorno ma ho paura anche se sono cistiana ma forse ho più paura di continuare a vivere scrivere questo e una fatica pazzasca continuo a angiare perché sono forte ma i dolori alla pancia e fare pipip sono terribili non spoo fare prelievo midollo e colonscopia in itaia ci sara un medico o due che capiscono gli altri niente di niete ero pazza………………….sono di vercelli moriro ma fate conoscere la mia storia vi prego sto lottando per non suicidarmi vi voglio bene e prego per voi tutti i gg

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  8. lauri says:

    Thank you! I searched for Lyme disease suicide because I’m so tired of this fatigue and pain.

    I keep envisioning myself slicing my down the veins in my arms and watching myself bleed out. Imagining the bartonella and babesia flowing out like fish from a burst dam, and the borreolosis scrambling for nutrients and slowly dying with me.

    I searched today to see how other people with Lyme have ended their lives.

    I was thinking of preparing for next year when my daughter goes off to college. I’ll be alone. I wanted a plan.

    You gave me hope again. I feel lighter after reading this. Thank you. I think you might have saved my life.

    • Jenna Seaver says:

      Dearest Laurie –

      I am so glad my blog post helped you, and gave you the strength to carry on. Too many have lost their life to to despair and yet there is so much to hope for.

      Dr. Cowden suggested taking 1 capsule of LiZyme 3/day and 15 drops of each: Amatilla and Aveya by Nutramedix every 15 minutes up to 8 times in a row when you are overwhelmed with thoughts of taking your life. I immediately purchased them from Amazon and feel good to know they are in my cupboard waiting for me if I get those dark compulsions again.

  9. Judi says:

    I just found your blog today…… While I was searching for sites “Lymes Disease and suicide.” I have been in pain for at least 10 years and just found out last year I have Cronic Lymes. As you all know, I have done all I have been told to do…. All to no success so far. I see a Lyme literate doctor in September (second visit) that is supposed to be very successful. His visit is $400 an hour. I then went for $5000 worth of blood work that he will discuss with me at out next meeting. Unbelievable. I had a Lyme doctor in Golden who had me on an antibiotic for over a year. This new doctor said that doctor did not treat me correctlyt for Lyme so I felt all that money and time were for nothing. I am in Boulder, Colorado. No one here even knows that Lyme is pandemic in our state. I have traveled the world for the last few years but I still believe I got it while hiking in Colorado. I am 67 years old and have been over the top active, fun and the life of the party. Not anymore. I try to still go and do…. But I am getting so crippled I can hardly walk. My body wide pain is 100% of the time. I don’t even know how I live through this. I am a very strong and independent women so I don’t know how to live anymore. My husband of one year is pretty overwhelmed….. I know it is more than hard for him as it is for all friends and family. I do have my sister who is very supportive but I feel I complain all the time. I so wish I could run away and not share this ordeal with anyone because it actually makes it harder. I just want to have it over with. I feel because of my age….. I don’t even have enough time left to even go down this unsuccessfull path. When people see me, they dont have a clue what I am going through….I laugh through me tears constantly. Being in Colorado I do have legal access to medical marijuana and have tried it all. I can’t handle the THC very well so get it with more CBD ….. but not much good for the pain. When I go to bed at night I will use more of it so it will at least help me get to sleep. I also take ambien and trazadon to help me get and stay asleep. I always says my bed is my torture chamber. I feel like I am now just rambling. I Have been to two Lymes support groups and I leave even more discouraged. I guess there just aren’t any answers. I still hate the fact that our U.S. doctors and insurance won’t touch this. It seem like the Lyme literate doctors are all under the radar so they can ask any price they want. We are all so vulnerable to this because we want help so bad. My heart just breaks for those who can no longer afford to seek and receive treatment. I hate putting this financial burden on my husband as I can no longer work. It’s all so sad….
    Thank you for letting me vent…. I needed that today. I wish there was a way to warn every person in EVERY state the dangers of these ticks. Also terrible in Europe, Australia and New Zealand. It is a life changing “bite”. Will there even be a moment in my life again where I can say….. I don’t hurt? Has anyone ever been cured? And then there are the relapses…… See why I feel so hopeless?

    • Jenna Seaver says:

      Hang in there Judi!

      I am so sorry you have acute Lyme disease! I am not a licensed medical practitioner (so I can’t legally give you any advice), but based on my experience it sounds like you have an advanced case of acute neurological Lyme disease which I am VERY familiar with as I have suffered down the road you are on.

      I truly empathize with your pain (physical, emotional and spiritual) and want to encourage you by saying YES YOU CAN BE CURED!!! I can honestly say that after following my protocol for three years that that has ultimately worked for me; it has taken me from over 125 symptoms to 3, and

      Don’t EVER give up hope because there are many who have successfully conquered the mountain of pain and fear you are facing but there is no quick fix.

      Tell your new husband to beef up his support system while you focus on recovery. Set realistic expectations. It may take longer than you are prepared to give, but in the end you are best served by. This disease destroys families so take care to safeguard your loved ones by providing information resources and helping each other adjust their expectations. It is normal to panic when faced with overwhelming pain – our body shoots cortisol into the blood stream causing fight or flight and WE ALL FIGHT THE FEAR OF PAIN. STOP. Take a deep breath and refocus your energy on building back your strength. Bracing against the pain makes it worse so have your husband help you redirect your thoughts to the things you can do.

      Between now and your doctor’s appointment focus your attention on your healthy self and try not to let the pain and fear overwhelm you. Count yourself lucky to be able to make an appointment with a truly Lyme-literate doctor. It is sad how many who write to me that either can’t afford care or can’t afford travel AND care for Lyme – especially from places like Australia where until recently Lyme disease didn’t supposedly exist.

      Believe you can be cured. Instead of bracing against the pain and giving fear a place in your head, replace it with do the kind of breathing they teach in Lamaze http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3209750/, hots baths, warm compresses, (I curl around a “CHI”/Infatronic machine that uses pulse therapy that mimics the scientifically measurable energy that radiates from reiki masters.)

      Chronic Lyme can be cured. Don’t panic. Just understand it will take time, and try not to get impatient. You can and will survive this but it seems as though you have the despised double whammy of neuro-Lyme which makes the pain sharper and takes away your mental sharpness when you need it most.

      I hope you read about the DNA test at Advanced Lab Services because you will want reliable test results. Your new Lyme doc can order the test (unless he or she is in NY.)

      Hang in there Judi –


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