Brooke, on Lyme, Suicide and the Invisible Knife in our Backs

lyme-suicideThis is a reply to Lorraine (In the comment sections) regarding a post we did on,
” How it Feels to Lose someone from our Lyme community to Lyme Disease.

Brooke’s Reply:

“God bless Lorraine, couldn’t have put it better myself. Used to be a good writer, but too many symptoms now, or I would write an elegy for all the victims (from suicide). Feel myself as though I am worth nothing, why did I live, why did I go to school, why have I ever tried, tried to beat the illness, only to be denied treatment, until it spread to brain, then bones in head and is not intractable and insurance won’t pay for anything…nursing home, hospice, abx, and even kicked out of crisis center because of PICC line and liability issues while surgeons have refused to do biopsies to find it because it’s a litigation situation, or could be….

Two years ago I was healthy beautiful, dating, now lost all  possibilities, no validation. I feel your pain, i feel your pain and the hope it will change. Not be always broken, if only we would have our suffering recognized. It is like saying someone does not have an invisible knife in her back, as she vainly tries to remove it and is told the knife does not exist or if she just pulled harder, out it would slide. we all lose so much emotional blood in this battle not just against the disease but against ignorance.

I feel like these are precious people who had great strength and hope in them at one time, but were driven to absolute despair and just to make something change besides sitting there, feeling themselves slip further and further physically and becoming less and less a part of the normal world, they chose to make this one last act of protest and dignity happen for them, and to provide them much needed peace from the pain and anxiety of the pain.

Getting the illness and being misdiagnosed over and is like being hit and run, left to look up at stars paralyzed in confusion, wondering what happened, and when you call out and call out and finally the ambulance comes they run you over again, and then go with their lights flashing on to the next person to save.

I have been to multiple ERs with severe weight loss, vomiting several times an hour and pain in my head bones so bad it made me lie on my face, have trouble seeing, thinking, imagining, reading, etc. but the doctor said you are clearly sick but you don’t meet the “codes” so I must send you home and then they say, now, “if you will excuse me, I have a life to save.” As though mine did not matter and I was not asking to be saved just then, the other patients come first of course, but to patiently wait for some help to be put in the hospital, when I finally was put in there, they kicked me out after three days and the hospitalist mocking me and my doctor and my family to the point of me breaking down in tears.

I know how every suicide feels. I am likely be one myself in the next week. I know the shame and the gradual loss of self and the pain and helplessness that we can’t change anything, but we all start out with our heads high, hoping to be that last voice that might make a difference. It hurts so much to be called simply “emotionally disturbed” and manipulative and a liar and not to have your real grief and loss and physical pain recognized and sometimes that pain is worse than death because narcotics don’t control it.

I know from the bottom of my heart what each of these people went through. I am there, too. I remember some names of suicides, Heather, Bryan and Theda, and Susan, most of them were my own age, but their strories made me sick, and that was when I thought someone must start a Lyme hospital a refuge, where people like this can come. It would be a charity hospital like Saint Judes and would have a blue flame of hope burning above it. This was my dream to create this, before getting so sick it spread to my brain/bones, but now my hope is someone else who has money like the British Lyme victim John Caudwell will do this instead.

The part that hurts the most is that it seems it does not matter how many of us die, we are like mosquitoes hitting a light and falling with no names or notice to the medical world. Then, when you go, it has though they has seiged you out, time was on their side, they knew you would end it eventually and then the false diagnosis of depression would have validation, and of course under those circumstances there is not going to be an autopsy, since it appears to be suicide, and so through the invisible knife of Lyme which the patient dies trying to pull from his back, the myth that all Lyme victims are crazy somehow it perpetuated.

Who could bear to live to the end of syphillis or cancer with no pain management? Or AIDS? Why should it be different from this and who is not surprised with the combined physical and mental complex that so many of us, even the strongest, go by suicide? It’s unspeakably sad.

Vets treat animals to get them better because an animal has monetary value, and they get treated for Lyme ASAP, but all a human seems to be good for is to make money for doctors by staying sick and the insurance does not want to pay out for the treatments. A human is worth more to our economy dead than a cow or a sheep or a head of lifestock. It is enough to make you not want to live, even should your lyme go away, but, there are still the people on sites like this who care. God rest the people who have lost their lives to Lyme and suicide from Lyme. It makes me too sick to even explain.

lyme-lives-matter

Note from  Lisa Hilton:

I wanted to share this post (with permission) for two reasons, first, when I read this, my heart just went out to Brooke. I could understand every word she said, every pain she described and could really relate to the knife in the back analogy. I thought if only doctors, insurance companies, the IDSA and CDC and any one of our friends and family  members who denies Lyme could just read this, just  maybe they would get a glimpse into the suffering of a Lyme patient.

Also, I am scared for Brooke. Yet understanding of her situation. But I thought maybe with some support and encouragement we can save another from suicide.  Can you all please leave an encouraging message for her below in the comments? Let her know her life does matter.

Actions you can Take

In Memory of Shea, Please Take the Pinkie Swear

Please leave a comment on: CNN: Lyme and Suicide: a Problem Ignored

Suicide Help Hotlines and Support Groups

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21 thoughts on “Brooke, on Lyme, Suicide and the Invisible Knife in our Backs”

  1. Its nice not to feel so alone
    and reading this made me realize
    I’m not the only one that feels like
    giving up at times
    The hardest part of all this is every one
    looking at you like your crazy when
    you try to explain – why the only words you
    seem to seem to now is
    Lyme disease

  2. Wow Brooke, that’s the most powerful, chilling, relatable, heartbreaking write up I’ve seen. Thank you for sharing. Please stay with us. You are loved, valuable, and we need you. I completely understand the other option. I know your fear. I share my heart with you. Sending love. God bless you.

  3. brooke,
    i forgot to tell you this, please follow these directions and send UK’S BILLIONAIRE JOHN CAUDWELL using this private email address they have asked folks to use ok?

    ask him if he’d fund 2 places for LYME/CO-INFECTION patients could go and live who have lost everything:

    1 place in USA
    1 place in UK

    this way he’d see your request so eloquently said with your gut-wrenching story.

    use my broken up version as he has neuro lyme to.
    *******************

    he has 10 family members including himself sick!!

    thanks brooke! you would be HELPING ALL OF US … USA/UK 😉

    hugs/prayers … let us know if they MIGHT CONTACT you vs. getting this automatic reply from them acknowledging they RECEIVED your PM to him.

    *********************

    Please only use the email address:

    lyme@caudwell.com for Lyme Disease correspondence.

    Any other emails that you have previously used to contact us, please discard.

    This email address should now be used for private communication only.

    If it is not private, please continue to use facebook, because it is informative for other people and spreads the word and the knowledge.
    *******************

    As we are sure you will appreciate, John has been inundated with a high volume of emails, calls and social media posts.

    Whilst you will not receive a response we can assure you that your communication is not being ignored.

    All the information is being collated and categorised in order to help John with the huge challenge of helping as many of you as possible by getting Lyme on the NHS’s radar.

    Some of you will be contacted nearer the time when John is able to set up an action strategy.
    ******************

    We are sure that you will also understand that at this moment in time, his main focus is to improve the health for he and his family.

    Thank you for your support in helping us combat this dreadful disease.

    brooke, it’s VITAL to get your pm to him NOW before he makes MAJOR CHANGES/INVESTMENTS COMMITTED.

    he was taking apps to be his CEO over what he is setting up.

    i haven’t read his FB in ages; so don’t know what has occurred since then.

    again, if his staff SHOULD CALL/EMAIL you vs. automatic reply shown above, let us KNOW would you?

    i hope they DO contact you! my best today and every tomorrow…..

    hugs/prayers to you all,

    bettyg, iowa activist

  4. brooke,
    wow, what a powerful writer you are; you have NOT lost your special gift of words written/typed on paper!

    DON’T GIVE UP! i’ve been at this for 47 yrs!!

    35 yrs. misdiagnosed by 40-50 drs; UNACCEPTABLE!

    my husband passed away 14 months ago. i had his body donated to des moines, iowa osteopathic college for medical students to learn from..potential drs. to be!

    what i didn’t know was they remove brains of all donors; put in formaldehyde to be studied by students.

    i wanted jack’s brain to have a complete brain autopsy. 4 months ago this happened.

    11.22.15, dr. alan macdonald, florida, called me saying jack’s brain has made WORLDWIDE NEWS!!

    alan and paula pierce, norman, okla. small lab owner each found these 2 diseases NEVER found before in a brain autopsy:

    BORRELIA/LYME DISEASE
    and
    LEWY BODY DEMENTIA, like comedian/actor, robin williams had causing VIOLENT hallucinations!

    so now a medical scientific journal article is being written where I’LL BE 1ST CO-AUTHOR over tom grier, phd, minn. compiling everyone’s comments, paula pierce, and alan macdonald.

    final touches are being put on this now. will be sent to 1-2 journals in future.

    i just learned this fyi only to all reading this:

    we had 12/31 deadline where it could have been published FREE, but tom got sick w/bad cold, etc.

    another journal charges $2,000/ARTICLE; we might be able to get it published free there.

    no wonder we don’t get most current info out there PROMPTLY; many can’t afford $2,000+ per journal to publish their findings.

    i’ll be happy to help you find any ilads llmds in your state. please post here and follow these directions ok 😉
    welcome 😉

    please post in our LLMD REQUEST section link found here:

    http://www.mdjunction.com/forums/lyme-challenges-discussions/llmd-requests/Itemid=217/func=post/do=reply/type=0

    subject: show name of

    CITY/STATE/COUNTRY llmd if you ARE UNDER AGE 21, we need your age there too; different drs. are involved.

    SHOW INSURANCE CO. NAME TOO; thanks.

    brooke, i know you DON’T have insurance; read about it above, but others reading this may need help too so i’m including this!

    i’ll help you over there; big thanks.

    bettyg, iowa
    llmd coordinator
    leader/lyme challenges board

    i also have alot of info for the needy meeting certain criteria where you could possibly receive help.

    i think i remember someone getting help with a FREE PICC line on lymenet.org site at 1 time.

    so there are lots of possibilities out there brooke. i’ve been sending out ilads llmd names for about 10 yrs.

    your story was so touching; we need you to continue telling your story.

    in fact, JAN. 26-27, we’re to call our 2 federal senators & 1 house rep about lyme disease.

    in your case, we could help you find your state’s EMAIL ADDRESSES of senators/house reps so you could send MY broken up version of your story above to them vs. calling them!

    it will have a huge impact upon their staff who will get this on their computers!!

    hang in there; there are many rough times. i’m sorry to read you feel god has forsaken and turned deaf ears on you.

    in my case, when i needed his help the most thru back-to-back death/dying in my family for around 20 years, i leaned on him when i hit rock bottom.

    god helped me each time taking the burden of weight off my shoulders.

    hugs/prayers as you continue this journey with us all.

    put your arms around yourself; that’s MY HUG to you brooke … can you feel my unconditional love wrapped up in it too? i hope so.

    gabby bettyg, iowa
    activist many diseases
    66 to be 67 in 2 months …

    I’M NOT GIVING UP and i just got a new knee replacement dec. 2 !!! got a new hip 9 yrs. ago.

  5. lisa, i’m breaking up brooke’s comments above for NEURO lyme folks like me who can NOT read long, continuous block paragraphs like above. perhaps more people will reply this way.
    **************

    Brooke’s Reply:

    “God bless Lorraine, couldn’t have put it better myself.

    Used to be a good writer, but too many symptoms now, or I would write an elegy for all the victims (from suicide).

    Feel myself as though I am worth nothing,.

    Why did I live? Why did I go to school?

    Why have I ever tried to beat the illness, only to be denied treatment.

    Then it spreads to brain, bones in head; is not intractable.

    Insurance won’t pay for anything…nursing home, hospice, and abx.

    I was even kicked out of crisis center because of PICC line and liability issues while surgeons have refused to do biopsies to find it because it’s a litigation situation, or could be….

    Two years ago I was healthy beautiful, dating, now lost all possibilities, no validation.

    I feel your pain, and the hope it will change.

    Not be always broken, if only we would have our suffering recognized.

    It is like saying someone does not have an invisible knife in her back, as she vainly tries to remove it.

    Then is told the knife does not exist or if she just pulled harder, out it would slide.

    We all lose so much emotional blood in this battle not just against the disease but against ignorance.

    I feel like these are precious people who had great strength and hope in them at one time.

    They were driven to absolute despair and just to make something change besides sitting there, feeling themselves slip further and further physically.

    They are becoming less and less a part of the normal world.

    They chose to make this one last act of protest and dignity happen for them, and to provide them much needed peace from the pain and anxiety of the pain.

    Getting the illness and being misdiagnosed over and over is like being hit and run.

    You are left to look up at stars paralyzed in confusion, wondering what happened.

    When you call out, and finally the ambulance comes; they run you over again.

    Then go with their lights flashing on to the next person to save.

    I have been to multiple ERs with severe weight loss, vomiting several times an hour, pain in my head; bones so bad it made me lie on my face, have trouble seeing, thinking, imagining, reading, etc.

    But the doctor said you are clearly sick but you don’t meet the “codes” so I must send you home.

    Then they say, now, “if you will excuse me, I have a life to save.”

    As though mine did not matter and I was not asking to be saved just then.

    The other patients come first of course.

    But to patiently wait for some help to be put in the hospital; when I finally was put in there, they kicked me out after three days.

    The hospitalist mocking me and my doctor and my family to the point of me breaking down in tears.

    I know how every suicide feels.

    I am likely be one myself in the next week.

    I know the shame and the gradual loss of self and the pain and helplessness that we can’t change anything.

    But we all start out with our heads high, hoping to be that last voice that might make a difference.

    It hurts so much to be called simply “emotionally disturbed”, manipulative, a liar, and not to have your real grief, loss, and physical pain recognized.

    Sometimes that pain is worse than death because narcotics don’t control it.

    I know from the bottom of my heart what each of these people went through. I am there, too.

    I remember some names of suicides, Heather, Bryan and Theda, and Susan, most of them were my own age.

    But their stories made me sick, and that was when I thought someone must start a Lyme hospital a refuge, where people like this can come.

    It would be a charity hospital like Saint Judes and would have a blue flame of hope burning above it.

    This was my dream to create this, before getting so sick it spread to my brain/bones.

    But now my hope is someone else who has money like the British Lyme victim John Caudwell will do this instead.

    The part that hurts the most is that it seems it does not matter how many of us die, we are like mosquitoes hitting a light and falling with no names or notice to the medical world.

    Then, when you go, it’s as though they has singled you out; time was on their side, they knew you would end it eventually.

    Then the false diagnosis of depression would have validation.

    Of course under those circumstances, there is not going to be an autopsy.

    Since it appears to be suicide, and so through the invisible knife of Lyme which the patient dies trying to pull from his back, the myth that all Lyme victims are crazy somehow it perpetuated.

    Who could bear to live to the end of syphillis or cancer with no pain management or AIDS?

    Why should it be different from this?

    Who is not surprised with the combined physical and mental complex that so many of us, even the strongest, go by suicide? It’s unspeakably sad.

    Vets treat animals to get them better because an animal has monetary value.

    They get treated for Lyme ASAP, but all a human seems to be good for is to make money for doctors by staying sick; the insurance does not want to pay out for the treatments.

    A human is worth more to our economy dead than a cow or a sheep or a head of livestock.

    It is enough to make you not want to live, even should your lyme go away, but, there are still the people on sites like this who care.

    God rest the people who have lost their lives to Lyme and suicide from Lyme. It makes me too sick to even explain.

  6. Brooke,

    Please, please don’t give up your life it is very precious. By telling your story let’s other people know they aren’t alone.
    I know it can be difficult, undiagnosed for at least 10 years. Never had to do PICC line. Did antibiotics for over a year. Then made a decision to switch to herbal route. When it is bad I use Burbur (nutramedix) every 10 mins till it passes but along with Alka Seltzer gold & Gd splash of lime juice & glutathione pills, it works for me. I also hv a husband & one sister who understand and are very helpful. The one thing that helped with brain fog/thinking was scalp acupuncture.
    Changed my diet by reducing sugar intake eating more greens by adding to smoothies. I have improvement over last 3 years but been in bad flare lately. Doing Epsom salt foot baths to help detox since I hv MTHFR gene issue. If you need any info, I have so many Lyme Herbal books by Stephen Buhner he has such a wealth of knowledge when it comes to herbs. Sending healing energies and may you start on road to recovery. Hugs…..Chrissy

  7. thanks to all of your who responded and Lisa, please feel free to add me on fb if you want another friend and want to talk, the support is appreciated. blessings

  8. You do make a difference in this fight every day, no matter the pain…. Sometimes I think some of the terrible thoughts are not just the circumstances, but the actual effect on brain chemistry .

    1. Thank you. You do too, for listening and caring. I stopped believing in God because it seems he does not listen to the afflicted and see the injustice, but I have to keep believing that somewhere someone keeps a tally of our sufferings and battles and will reward the fighters in the end.

      Yes, it has changed the way I process things. I can no longer think up songs, which was a favorite hobby and have trouble having visual images, etc and the emotions are out of character, terrible murderous rages, and the constant depression, but I link it mostly to the endless and miserable symptoms and the fear of their advance.

      How are you doing? Are you in the fight against Lyme as well? My best to you. Thank you so much.

  9. Dear Brooke, I understand your pain. Every day is a battle to push on, but please don’t give up. So many of us are fighting this horrible disease. We have to win this fight together! Sending love and compassion

    1. Thank you, Melissa. How are you doing in your battle? Are you getting worse, better, or kind of in a draw? Yes, so many are fighting. When will the authorities listen and they stop persecuting those who are already being crushed? I do hope to win along with all of you. It is very scary because it has infected my head bones and I am finding that there is no drug that enters bone and cures all the forms of Lyme. But it is meaningful to hear from you and others. You can add me on fb if you want another Lyme friend, as long as I am still cogent :}

  10. Oh, Brooke, this is beautiful and terrible. Terribly sad. My son is 14 and struggling horribly; he’s sicker than I am and I evidently passed in my Lyme and co to him. I hope you can don a good LLMD and her strength to carry on. You are an amazing writer and we need your voice in this world. Sending love.

    1. Thank you, Lisa. I am sorry to hear of your son!!!!!!! That’s the part that makes me even sicker… they do this thing to kids KIDS, this not treating, not diagnosing right and just letting them wilt. Do you have a good doctor? I hope so. I am not sure my doctor knows what she is doing, but we are almost out of money and it’s in my head bones all over, so not much hope.

      Thank you about the writing. I was studying writing and poetry at grad school before Lyme and I miss being able to be eloquent and conjure and imagination without struggling and not being able to going through pain just to keep eyes open.

      What stage is your son in? Is there any hope, do you think? Blessings, you can msg me on fb

  11. Hi Brooke,

    I am with you in the Lyme fight. And that is what it is…a fight! Please don’t give up. Please. I had Lyme for 37 years before I was diagnosed. I won’t go into all the details of everything that happened to me…but I’m here to offer hope! After 2 1/2 years of intense treatment I made it into remission. While I still have issues, it is NOTHING like it was. For some it takes time to reach some kind of remission and the thing is, you may be just right around the corner from that. Perhaps you need a different Lyme Dr.? It is SO hard, I know. So hard. But, please, please don’t give up because there is hope. It won’t always be like this. Your life is of so much value. I don’t know where you are in faith in God, but without that I couldn’t have done this. He has helped me get through so many rough patches.

    From someone who is on the ‘other’ side of things and getting better please let me offer a hand of hope for you to keep going. It is possible! Grieve what has been lost, but don’t let Dr.’s who don’t understand and those who have stuck a knife in your back be the ones who decide your life. There are SO many other Dr.’s out there who understand Lyme and its complexities who do care and who will fight for you. My Dr. is like that. If I can refer you to him let me know.

    Don’t give up!

    1. Thank you, Dede, I’m so glad you eventually got better and hung on and turned the corner. My faith in God is very low now. I kind of lost it as a result of how things went with this when I prayed. I wish it would grow stronger. The doctor I have may not be the right one but we are out of money and insurance has just cut me.

      The infections have moved deep into the bones in my face. This makes it hard to understand things at times, to see normally, or read. I don’t think most of the infection is in my face. Treating it causes unbearable pain, confusion and nausea. I want sedatives, but they won’t be given. What doctor did you find to help you? What drugs worked for you?

      I am really struggling to find drugs that kill all forms of Lyme and penetrate the bones. There is research showing no such exists yet. It is very scary. Thanks so much for your care. You can add on fb, everyone can.

  12. Brooke..you do matter .. You matter a lot!! I understand exactly how you are feeling.. Although I am much older than you, I understand the feelings you are having.. Lyme is a horrible disease and we need young people like you to keep fighting and talking so that we can get the word out…

    Please, please do not give up.. I know you must have a family and friends who love you. This is very hard, but you will persevere and someday overcome it.. I promise! I’ve done it once and plan to do it again..

    So remember…YOU MATTER… I ( and many others) CARE!!

    1. thank you for reaching out to me, Dee. I wanted so much to get better so I could be advocate; it’s been really hard having it get into my brain and my face bones because it makes communication harder, but I’m still at it. Just housebound now. The family is actually having a really hard time helping me and relationships have fallen apart. We don’t have much money and insurance just cut all my treatment. I have a Picc in my arm that has not been changed in two weeks, just one example of the abandonment by the medical system. Home nurse can’t come out anymore and IV company wants proof of payment of course before sending anything.

      You said you had overcome once…did you have Lyme and get re infected? Oh, how hard. I hope you are doing very well in your fight and that you have a good doctor and lots of good people support and medicine.
      Thank you Dee. I can’t promise what I’ll choose to do or not. I just don’t want to lose my mind to this and get dumped into a TCU with no explanation or care for how it happened, as has happened to others. so sad.

    1. thanks, Heather, how long have you had it? Are you getting better. What I fear so much is when it takes out minds and abilities to communicate, it’s all Lyme patients have left.

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