TOUCHED BY LYME: When pain is simply unbearable
As a kid growing up in southern California in the 80s and 90s, Bryan Bower was a bit of a daredevil: BMX biking, rollerblading, skateboarding, snowboarding—never a show-off, but always pursuing his jumps and thrills. As a college student, he discovered a new passion, rock climbing. He went everywhere with his new best friend and climbing buddy Rhyan. Joshua Tree, Tahquitz, The Needles and Malibu Canyon were southern California favorites. In his early 20s, Bryan started training to climb Yosemite's El Capitan, practicing with one of those folding ledges that you haul up and sleep on when you’re half way up the 3,000-foot granite face. All that came to a screeching halt about six years ago
when Bryan was struck by a series of bizarre symptoms: debilitating headaches, brain fog, intense pain in his spine and shoulders, night sweats, difficulties with his balance, sleep disturbance and depression. That prompted a series of doctor appointments which, after many twists and turns, eventually led to a diagnosis of Lyme disease. By this time, the infection was deeply entrenched in his brain and central nervous system.
His was a dramatically changed personal landscape. There were different kinds of rocks to climb now, boulders named severe neuro-Lyme, co-infections, and brutal suffering.
He would try different doctors and different treatments through the years, even traveling to Mexico for alternative therapies. Sometimes, he could muster some of that old daredevil energy to dive headlong into a new treatment protocol. Sometimes he couldn’t.
Occasionally, there would be some improvement in his physical situation. When it didn’t last, he’d pour his agony and frustration into the written word, on his blog or in anguished poetry.
Previously a devout Christian, Bryan felt utterly forsaken by the God that had once offered solace and refuge.
In the last few years, Bryan spent most of his time in bed, trying to distract himself from blinding pain that even heavy-duty meds couldn’t relieve. He’d surf the web on his laptop, searching for alternative Lyme treatments while lying on an electro-magnetic mat. He’d keep TV, Netflix, or video games flickering on the big screen in front of him, in vain hope of even momentary diversion from the pain.
Friends and relationships from the past had pretty much fallen by the wayside. His mom and dad gave love and support and tried to lessen the isolation as much as they could.
Yet, nothing he tried could carry him away from the pain. Ultimately, according to his family, Bryan “just wanted the pain to stop.” On May 2, 2011, he ended his own life, leaving his parents to read the following words he’d penned for them earlier.
Don’t follow my starlight
It goes well beyond and you must stay
and drift away until you too are gone
– Bryan Bower
I never knew Bryan, but his is the fourth Lyme-related fatality I’ve learned about recently. It makes my heart sick. Wake up, America! Tick-borne diseases are stealing our children. While the medical establishment, insurance companies, and government health officials play politics and pretend that Lyme disease is no big deal, or worse – a complete sham – people like Bryan are abandoned by the institutions that are supposed to help them.
A speaker at the recent webinar on Lyme by the Centers for Disease Control made the astonishing assertion that long-term neuroborreliosis would eventually “resolve” on its own, without any treatment whatsoever. Tell that to Bryan’s heartbroken family. Tell that to untold thousands of Lyme patients who live with intractable pain and other unrelenting symptoms.
The loss of this young man makes me both sad and angry. We in the Lyme community owe it to Bryan and others like him, to channel such emotions into meaningful action. Tick-borne disease is taking a toll on our society that will not “resolve” on its own.
Click here to read Bryan’s memorial page with some of his poetry.
The TOUCHED BY LYME blog is written by Dorothy Kupcha Leland, CALDA’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
No words, just tears.
I am aching everywhere today. Lyme’s is real and Lyme’s hurts.
Unfortunately, I understand Bryan decision. I am so sorry for the loss his dear family is suffering, but I understand. I am also in tears right now and in so much pain that I don’t know how I am going to get through the night. I am so sorry that he had to suffer so. I wouldn’t wish chronic Lyme Disease on anybody. It is so, so sad that the CDC, doctor’s in the established medical community and insurance companies think nothing of sacrificing our lives for the almighty dollar! God Bless Bryan’s family. Not that this will give you any comfort, but in my heart I truly believe Bryan is finally out of the pain and torment of this miserable disease and at peace. After 10 years with the same disease as Bryan’s and being in almost exactly the same state of being, a lot of times I wish for that same peace for myself. However, I am truly sorry for your loss and hope it brings positive changes in chronic Lyme Disease patients are treated all the way around.
Hi Annie. I would love to talk to you more about your symptoms and different treatments you have tried. My father has been struggling with this disease for years and finally got diagnosed with Lymes about a year ago. He was tested by the approved CDC way and came back negative. Finally, he went to a Lymes specialist and got a positive test result. Since he wasn’t tested positive from the approved CDC way and is being treated differently than the CDC would suggest, insurance refuses to help us with payments for his treatment. He is in SO much pain. His knees, hips, and elbow are all swollen and sore. He can still walk but only very slowly and with a limp. This is the most frustrating situation. There is so much information out there about lymes but so far nothing seems to be curing him. Therefore, I started reaching out to other Lymes suffers to see what their situations are like. Best of luck to you- please stay strong and hang in there. Prayers to you and your family. I hope to hear from you.
Why was this young man not taken seriously? He's gone, this is serious!
Where does compassion end and ignorance take over? My heart aches for his family and also for he who had no hope.
Let us pray for his family and for wisdom about this disease so that no one had to go through this again. His life was precious….could it have been saved?
He could have been save through the grace of the almighty God, for a miracle healing.
Bryan was my son. The strongest warrior, the truest soul, and most knowing person I've ever met. Even when he was hurting in a way that most of us could not even fathom – he likened it to being shocked to death – he never showed how much, he never cried.
Bryan sent this message to his best friend in March after what was their last conversation: "I can’t tell u if I’m gonna live or die. I can tell that I want to live like crazy. In fact it is crazy to endure the pain I do. I’m trying acupuncture, magnetic mats and all this [stuff]. I guess my last hope is that I can fight my way out of it. Modern medicine can’t do much for me…"
Not only could 'modern medicine' not save my son, the state of outright denial that he endured and Lyme sufferers all over the world endure, denial that chronic Lyme even exists, sapped his spirit, though he never let on.
His death will not be in vain. We will never stop fighting this insidious multi-infectious disease. If I can help you or your loved ones please let me know. Every case is different, but I have learned a lot in the last 6 years. It's what Bryan would want. Peace.
jerrybowermi@gmail.com
I am so sorry!
I have neurological lyme, and like your son, I am trying so hard to fight this, but it is so very hard. I have lived through heroin addiction, and many other difficulties, but none as difficult as this. I am so very sorry for you, and Bryan. I just want you to know, which I’m sure you do already, he was an UNFATHOMABLY STRONG young soul to have carried on with such a burden for any length of time. My heart is with you!
Such a strong soul he was… This really scares me.. last summer I had a tick in my head from doing landscaping. I have been sick since. Lately my muscles hurt in my legs so bad, my head on the left and thats where the tic was, hurts sometimes so bad I feel like I’m about to burst. My vision, my memory. I feel like I’m in another world. I feel like its slowly taking Over me. I never have energy. My husband thinks I’m saying this just to whine. I’m going for another test this week. My question is how do you get treatment and help? I was once a centerfold model, I have two grandbabies and still fairly young. I see the housewives Yolanda Fischer spending so much money for things. Can’t remember what but something in Korea. Is the things I’m feeling lyme… its taking over my muscles, and my brain feels so different. Wish someone would acknowledge this disesae, because i went to a regular dr. And there so dumb to this. I kept saying then my head hurts… here it is a year now that I keep questioning myself feeling weaker and all these bizarre symptoms. :0( medical industry NEEDS to have Lyme Medical centers. Mr.Bower thank you for sharing Bryans story. It helps. It helps… it is for me now while I’m still searching to be heard of my symptoms. Thank you I will be thinking of Bryan while I seek help. Andrea
Please contact Dr. Liebell at The Liebell Clinic in Virginia Beach Va. He has a website and has written a book on Lyme disease and other tick born illnesses. I have it and was almost disabled. I dont care if you have to travel across the globe. Some people do. He saved my life
Hi can you please give me doctor number am from South Africa am in pain
Hi where in South Africa are you I’m all alone I live in Pretoria and am very sick could we perhaps chat on email mine is spiderursh@gmail.com
My name is Ursula
I am so sorry, so very very sorry. <3 <3 <3 (((((hugs)))))) I know how your son felt. I fight all the time just to stay. Lyme hurts. It robs you of your life. I was infected almost 2 years ago. I was a die hard in the trenches dog rescuer…I saved lives. Now I have days where I simply cannot get out of bed. My pain is unbearable at times. My thoughts are difficult and I lose clarity. I was a highly functioning person, owned my own business, and saved dogs. With my 2 friends we turned a high kill rural KY dog pound into a very low kill well functioning facility. We set the example for others in this state. Now I feel like a loser, I feel like a useless person.
I went through 3 doctors before one acknowledged what I knew..I had a tick borne disease. I pulled the tick, I had a funky rash, I'm a dog rescuer and had treated dogs for tick disease. When I developed fever and bone breaking pain I knew…so I went to a doctor for doxy and pain meds only to have him stick his hand in my face and tell me "there is no tick disease in KY" …excuse me??? We see it all the time in dogs!!!! So I see another doctor that looks for everything under the sun except tick disease. At this point I wished so badly that I was a dog and that i could go to my vet. Vets understand tick borne diseases. Vets are on it when a dog tests positive.
I was going to treat myself at this point, order the doxy…but wow, the price of doxycycline soared. The bottle I used to pay 60 bucks for was now almost 700 bucks. I go to see a third doctor that understood lyme a little better. She isn't an expert but she does know some about it and she was willing to give me the doxy and pain meds and she understood and respected my reluctance to take some of the newer drugs that were still in stage 4 clinical trials. But it was to late…the lyme spirochete had done it's job well and now I live in chronic pain. The insurance company gave me a huge hassle about paying for the doxy. It was too expensive. Now why is one of the oldest and easiest to make antibiotics so expensive now? During the highest point of the lyme crisis? is it coincidence or something else? You have to wonder. I get dizzy headaches. My brain simply does not function sometimes. It feels like there is some alien thing inside my joints trying to push and pry them apart. I even get the occasional low grade fever still. I've been in town and had to go hide in the bathroom and sob because it is so intense at times.
I want to throw in the towel and give up. I really do. But I can't. I have dogs and my little 501c3. I had to leave the big 501c3 I started because the lyme was too much and it was such a high volume rescue and I could not keep up. I have this little rescue now and struggle to keep it going physically, emotionally and financially…but it keeps me going. They rely on me. I have to keep moving forward and keep hoping for a miracle cure. I've done all the natural treatments, and read the books on lyme and co-infections. That's hard. When your brain doesn't work and you are trying to read a technical book, you have to read and re-read and read again.
I wish I had known Bryan. I wish I could have talked to him. I wish I could have helped him bear his burden. I have friends with Lyme and we talk a lot. It helps to talk to fellow Lymies. It's so hard getting through the days. I know that too well. When it gets bad I have friends I can reach out to that are going through the same things I go through. It doesn't make me feel better that others suffer, not at all, but it helps to know they understand. And I have the dogs that rely on me. I wish you peace. I send you love. I thank you for sharing your story. I thank you for telling the world Bryan's story….((((((((hugs))))))….Julia
I agree with Mary's comment. Although I have neglected my relationship with God lately, I am now seeing the importance of prayer and this is one of the issues that I have begun bringing before the Lord lately. Christians, Pray and don't stop praying, please!
Dear Mr. Bower,
I am so incredibly sorry for the loss of your son. I, too, am a sufferer of lyme. Initially, I didn't believe it was lyme- the tests were negative. Then I came to accept the diagnosis and it is unfathomable that a disease exists which the medical community completely disregards. It is unacceptable and I am with you to fight so that Bryan's life and the lives of so many others were not lost without purpose. I offer you my deepest sympathies.
I am so sorry for your loss. My husband and I suffer from chronic lyme disease for 4 years now. It is the hardest struggle of our lives we have 5 kids we are raising and both working full time. It is forcing ourselves through the pain and complete personality change and brain fog. I have become so angry and depressed. we are on 3 antibiotics and so many other treatments but still we suffer. All because our dr's wouldn't treat us when we first knew we had it. Our Dr's are killing people and the FDA all to keep people sick so they don't lose money on drugs people take for illness's they don't even have. There were times I wish I wasn't here anymore and wanted to just die or get better.
I can't imagion what your going through losing a child. Nobody understands how your quality of life is gone and you no longer even know who you are anymore. My heart breaks that Bryan felt so hopeless to take his life. I do understand that most of us with lyme as bad as his (im sure his was worse than mine) have one time or another wished we weren't here anymore. It rips your life of everything you once were and you think it will never stop. All over a tick it seems impossible that a tick can cause such damage to the human body and brain. I'm sure Bryan was no longer seeing any light at the end of the dark hole of depression this brings to you. It is so unfair that Dr's are not learning about this or letting the FDA fear them into losing their license to treat people with Lyme the way they need to be treated. We went to the top specialists in New England at the best hospitals and nobody had a clue what was wrong after hearing there as a tick bite and red rash. For me I didn't get any red rash or aware of a tick. It has been like my life has been ruined for many years. I just hope there will be a cure or the FDA will allow a cure to be known for so many that suffer. Millions are walking around with Lyme and Dr's make them feel like they are crazy and that they just need drugs for depression and send them on their way.
May Bryan rest in peace with no more pain and suffering. I know he will be dearly missed and nobody should ever have to lose their child before themselves. It has to be a nightmare and my heart goes out to you.
Mr. Bower, I commented previously. After I read your post I just wanted to tell you, that being a chronic Lyme Disease sufferer with multiple co-infections, your words touched my heart and I know that is what Bryan would want you to do. I have been sick with all of this for so long that even good friends and family members go through periods of doubt of what is really wrong with me because of the false myth that Lyme Disease is curable and/or it is only an East Coast disease (I live in CA). I truly believe that hurts more than anything else and then that hurt is followed up by doctors that are so ignorant of the disease that they like to humiliate you by insinuating that you are a hypochondriac and/or crazy when you tell them your symptoms and go to them for help, which happens for years until you finally get to the right doctor. I was just like Bryan before this disease changed my life. Gawd, life was great. I ran, mountain biked, hiked, rode horses, threw parties, had tons of friends, etc… I LOVED MY LIFE. Now, I am bedridden and as I look ahead of me, it is hard to see a positive, happy life with this disease. I am hanging in there because I have a family and two kids that need their mother even though she is bedridden, but I can relate to EVERYTHING Bryan said and did. I know the choice he made was not easy for him, but the choice to keep living in a body and mind that is being ravaged from inside is in my unique opinion worse. It is “not living” in pain and mental torment. I’ve often wished I had a disease recognized by the CDC (So I wouldn’t have to pay for most of my care out of pocket!), that I knew I could fight and at the end, I knew either I was going to live or die. With chronic Lyme Disease, very few are healed, most of us suffer just a long protracted life with this disease having no end in sight, just more suffering, more disabilities and more doubt from the outside world. No matter what though, the loss of child has got to be the worst pain any of us could ever go through. So in all I said about this horrible disease, I am most sorry for loss of your son. Bryan sounds like an outstanding, brave young man. I wish I could have met him!!
Can't understand why the people which suffers from an debilitating illness like Lyme disease, does not use the neuroprotective herb "Cannabis sat. var. ind." as an efficient medicine against the pain.
I suffer from Lyme no more that much, because I can manage the pain now with the help from this plant, otherwise I think I would have committed suicide as Bryan, that's for sure.
how do you use it? how do you get it?
Thank you, Dorothy, for this sad and moving account of yet another person whose pain and death are the outgrowth, not only of this complex and debilitating illness, but of the ignorance and denial that surrounds the disease and the patients.
In educating the public, as well as professional, about tick-borne diseases, it is vital that we put a face on the suffering patients, and tell their stories. To change the hearts and minds of those in positions of power, we need an outpouring of accounts by patients and those who love them, to insist on funding for unbiased research and access to journals for publication.
In our communities around the country, we need to continue our efforts to educate both professionals and the public. And we need respect and support for the suffering patients and their families.
Ultimately, our unbiased research needs to lead to a cure for chronic tick-borne diseases, a cure that is not defined by weeks of treatment, but by the end of the suffering of the patients, the end of all symptoms, the restoration of their health!
Sandy
So sorry for the loss. Was sent this by a friend who has been suffering for yrs with Lymes. For him to post is an eye opener to everyone that has been bitten, has thankfully recovered or that has been suffering for yrs as he does to promote awareness that this f'in sucky disease still plagues its victims after yrs of treatment and after yrs of loosing our loved ones or having them cripple. Such a bizzare and painful evil disease.. My heart and prayers goes out to Bryan and his family. <3
this is us. daughter sick for 5 years. seizures, sick, sick. had to refinance the house and credit card bills. $1000.00 bottle of medicine for 11 months. had the doctor of doctors. the hero of lyme. he is 82. you know who he is. well she is getting better. the brain lesions are less. she can hold a fork without dropping it. she can live a day without collapsing. this man is speaking out for bryan. he has 2 million dollars in legal fees as the IDSA and FDA try to shut him up. he pays a legal monitor 6000.00 out of pocket just to continue practicing. the children come to him from all over the world. he will be dead or bankrupt soon if the medical community has their way. you know who he is. google him and contribute. if you care as much as you say. he IS the man of the hour. he alone has taken on the medical machine. all the rest of the lyme docs are hiding and sliding. if anything changes it will be becaouse of him.
Jerry, I'm so sorry for the loss of your son – made me cry. I personally feel it's time for us to stand up to all the doctors and not take no for an answer, and then educate their staffs. We are all fighting for our lives now. I am not quiet in doctors' offices anymore. I bring brochures and I talk about the real facts of these illnesses.
I saw a mini break-through once when a doctor told me he was walking a dog. I talked to him about dogs and dog walking, and for the first time, I saw worry in his expression. So here's a possible idea – find a way to personalize the issue with doctors – do they have family, pets, do they have any kind of an outdoor lifestyle. And then tell them what could happen to them and theirs.
Another SAD case of Lyme …… To many lives in LIMBO and NO HELP IN SIGHT !!!!!! Peace
My heart breaks again as I read this story. I know Jerry and Bryan and they helped save me from much suffering. By sharing their knowledge I was able to get effective help and avoid many bad diagnosis along the way.
Bryan was handsome, bright, funny and an amazing writer – he bravely carried his pain, but when he talked to me about it there was seriousness that left no question. After I met him I quit all the self doubt and wondering and I then took my diagnosis and care very seriously and am doing pretty well. I know Bryan's life helped save my own.
Much needs to be done to help Lyme complex sufferers, protect our doctors and educate the unaware. With Bryan's story and Jerry's passion there is a bright light in the darkness!
Jerry gave me a copy of Under Our Skin – which I have shared with a number of Doctors and friends – it's one thing that has made a difference.
Thanks to so many who move this forward.
Their are no words strong enough to express the pain for your loss. I'm a 54 yr. old woman who also suffers with Lyme disease. Drs.ignore what Itell them and act like its nothig. They need to listen to the ones who are suffering and learn..how about that oath they took? It's evrything I can do sometimes to make it through a day at work. those who know and love me will tell you what an effect it has on you. headaches..tremendous pain..leg muscles completely locking up.Emotions are numb.If not for I would not make it. I pray there will be a break through soon.It's real…wake up out there.
Very few people actually die from Lyme disease. But some do die because their treatment fails to consider some other chronic and perhaps undiagnosed condition.
The Hippocratic Oath should begin with the statement "First, know thy patient.."
Condolence to Bryan's family and friends. You did your best…
I didn't know Brian, but I know his disease very well. Been suffering as he did for over 8 years now. Lost a career and quality of life. I am now disabled and spend my days on the internet educating others. RIP Brian.
Dear Mr. Bower,
My hearts breaks for the loss of your son Bryan and the pain that finally became too much for him to bear. I, too, am being treated for neurologic LD and in some way feel I can relate to such pain and despair. My heart goes out to you, and my thanks for your extension to help others as you can. Susan
Everwatchful, MANY, TOO MANY people DO die from Lyme disease! (not some other misdiagnosed chronic illness). 1 in 3 die from suicide because the pain of Lyme overtakes their body and mind. And YES many die from the LYME spirochetes that get into all the organs of the body, some causing irreparable harm. Lyme prefers the brain and heart so do not be misinformed that Lyme does not "actually" kill people. There are many families and death certificates that would say otherwise!!!
I’m putting together some information on Chronic Lyme Disease for my senator. Can you tell me where you got this statistic about lyme suicide?
I've had it for 21 years. Misdiagnosed (no diagnosis, really – not for lack of trying) for 15. Been in treatment for 6. It's been hell!!!!! I'm so very sad for your loss. I've been there more often than I'd like to admit. There are a couple of reasons I haven't ended it: my husband and my son. I keep going for them, even when I don't think I can keep going. Though I was optimistic about healing back in 2005, when I first was diagnosed and started treatment (for Babesia), here I am 6 years later treating Babesia again. I am fortunate to have found a really good doctor – but I'm still sick. No insurance, either. Sometimes there's a light at the end of the tunnel, and sometimes it turns out to be the headlamp of an oncoming train.
Love and best wishes for healing to all who are suffering.
I am in tears because I feel this young mans pain! I have chronic neuro lyme and suffer everyday wondering if I can make it another week. days were I cant swallow food, cant breathe, numb brain,migraines from hell, severe sore throat, loss of voice, shoulder arm leg pain, blurred vision, ect.. symptoms are endless and always changing. I live in CT. and have been treated by lyme literate docs but without relief. Now I am also testing positive for autoimmune. I cant get two doctors to even agree on what to do. I often think about ending my life because its relentless and a nightmare. My only hope is they can find some way to cure this but I feel so hopeless! God bless all of the people suffering from this disease!
I am so very very sorry for your loss. I can sincerly relate to what your son went through. I’ve come close to suicide so many times. There is so much suffering w this disease in so many different forms it seems unbearable to even the strongest individuals no matter how much one has to live for. The physical pain for me is the worst. It angers me so much that I’ve come so close to ending it all from pain that is not being managed properly. Even w all this illness has stolen from me I very much want to live!!! I value the precious gift of life more than ever but the pain can just completly break me down that it seems impossible to endure one more day. I thank God I’m still here and my heart breaks for those who couldn’t endure anymore. Shame on all the drs that fail to everything in their power to allieviate the horrific suffring this illness causes.
I am so very truly saddened for Bryan’s family’s loss. I do understand Bryan’s decision to be released from his pain… Yet I am OUTRAGED that the medical community did not eleviate his suffering and help him through recovery.
I was bitten by a tick when I was around 14, got the rash, and flu-like illness, with high fever. I have lived/suffered for many years, not JUST undiagnosed, but without doctors taking my illness seriously at all. Recently I found a “lyme Literate”doctor who believed that I was ill & in pain, & am being treated. I had years of whole hosts of “unexplainable” medical issues (chronic low-grade fevers, sudden vision changes, chronic insomnia, body rashes that dermatologists either misdiagnosed or could not explain, painful eyes/photophobia, chronic fatigue, back pain, ringing in the ears that never, ever stopped and continues to get louder, etc…
It was only through the internet that I found a Lyme literate physician who sent my bloodwork to IGENEX labs in Calif, diagnosing me. I cant belive i even have to write “lyme literate”….why are these diseases being denied existence and/or belittled???
Ive been FINALLY recently diagnosed as having advanced neurological Lyme and Babesia. I feel sick all the time & have chronic pain, numbness, etc..
Patients have a right to be quickly and properly diagnosed and TREATED. We must help one another get diagnosed/ treatment, as the medical system doesnt work for “tick-diseases.”
I have been sick for 13 years now. I am supposed to be 21 now. Nearly completely crippled mentally and physically for a few years. Can barely speak/type. I was misdiagnosed, ignored, laughed at, made fun of and not believed for a decade by dozens of medical “experts” and “professionals”. I was finally diagnosed about 2 years ago. But I have been sick for so long. I have not been able to find a doctor who can help me.
I am sick of being a cripple. I am sick of not being able to speak. I used to read 2-4 full length books in a week. Now I can barely read a sentence on this page. I cannot focus; think. I am tired of a decade of chronic pain. I am tired of the headaches and the brain inflammation and the 300 other symptoms. I want to be free. I want to die every second of every day.
I am going to fight and attempt to find treatments/doctors to help one last time. And if that fails, which I think it will 🙁 I too will finally fade away. The IDSA and CDC are murdering so many. why? 🙁
Why.
I am so sorry…
I have now almost lost my oldest daughter to this disease….
And my middle daughter now talks and crys of wanting to be out of pain…
She says, “If I truly loved her I would let her go”
Again, I am so sorry…and I pray for your healing and I pray for my girls continued fight…
much love <3
Lyme is at epidemic levels yet we suffer in silence. I live in chronic pain and sadly my family doesn’t understand what I go through. I suffer alone in silence quietly praying for help. I am here to help anyone that needs it and pray for anyone who is in need of prayer. I have run the gamut with this disease. One final thought. For those families who have a person with Lyme, take the time to listen and understand and love them as much as possible. Lyme is a horrible disease that we never expected to ruin our lives.
I am so sorry for your loss. I am also sorry for your son’s suffering as well as all of the others who have commented. I have had ChronicLyme for almost 20 years now and it’s been a nightmare. Loss of jobs, friends, social life … Pretty much life as I lbew it before I got sick in 1995. I am from NJ and have been in severe pain for several years and once again on disability and fighting my way back. My family, like Annie’s, has questioned my diagnosis etc because everything is so controversial even now but I know it’s nothing else. I have been tested and retested for all the mimicks and always tested negative. Due to the years of drug cocktails and initial IV drugs eventually I tested negative for Lyme too but my doctor was never big on the western or Elisa as my brother never tested positive but had the bullseye and was very ill for years with it. I could go on and on but there is no point in it. What is sad here is that I don’t see much change in how chronic Lyme is even handled in almost 20 years yet there are countless people suffering from it. I honestly don’t know how many more lives we will lose before the medical community give Chronic Lyme the voice it deserves! Until that day comes I will continue to pray for those suffering from Lyme and any other tickbourne illness. God Bless!
I just came upon Bryan’s story about his life and his death. I am so sorry for his family. I also have persistent Lyme that 4 yrs ago finally attacked my brain and have severe head pain, seizures and difficulty in walking. I often wonder if I can make it through another day since most my days now are spent in bed or on the couch because I am so debilitated from this horrible disease. Many days I wish I would just die or fall asleep and not wake up some morning. The burden it puts on my husband just breaks my heart. I and he and many other Lyme sufferers and their families do not deserve to be so sick, pay so much out of pocket trying to get better and not be believed or validated as being so sick. The pain and isolation of this disease is the worse.
Its such a terrible disease and one that is somewhat ignored by the medical community. they want to blame it on something auto immune its so hard to get a diagnosis. i had lived in an apartment with an unsanitary room mate who brought upon a dog with fleas that infested the apartment. i had many bites and soon after found an engorged tick on the kitchen floor. i killed the tick and soon started feeling awful. i went to several doctors and was told i had ankylosing spondylitis and lupus. i did have the gene for spondylitis but i think the lupus diagnosis was really lyme. i went to see a LLMD and he thinks i really have lyme im just waiting on the western blot through igenex. all i can say is that i wake up in excrutiating pain for the last two years of my life muscle pain, joint pain, arthritis, headaches, seizure disorder. i feel my life has been robbed and i wish that i could just die in my sleep and stop this endless suffering. things really change when a person is sick and expect to get better and the suffering just drags on and on and on and there is no end in sight. im sorry about your loss. i wish that people would take the disease more seriously.
I have chronic lyme for 4 years, at first I thought it was slipped discs, pinched nerves, overworking my body ect. docs told me I was fine, until this year it got so severe, it hurts to stand. Finally this year I found out what it was. I been to 4 – 5 different doctors, lack of healthcare, we found a doctor who took me seriously and prescribed me doxy. Already my pain level is hitting a 10, trying all the over the couter meds out there. Due to all these new healthcare regulations, the doctor wouldn’t prescribe me pain meds. I have now blacked out from herxing due to the pain, a friend who didn’t want to see me suffer gave me vicodin. Even still its severe pain, but it does take an edge off that over the counter did not. This is horrible, I can’t get welfare, healthcare that accepts LLMD, nor can I afford an MRI. I wouldn’t wish this on anyone
I am only 23 years old
I have an aunt that I’m watching slip away. She is in so much pain everyday. She can not feed herself or walk anymore.
It’s sad to know that there was a cure, but because there wasn’t enough funding for it…it just is gone now. Think about all these people including Bryan and my Aunt who could have their normal lives back. I only wish our government would focus on the diseases like this and stop supporting other Countries. Fix our own and then save the world.
So the thing with lyme is it does hurt really bad. The pain is excruciating and it is very hard to relieve it. Depending on how much of a fighter you are, you just keep trying to find something until it goes away. When the pain is in the head, all you can think of is wishing you were dead. Since that isn’t an option, second best is go to sleep and then when you wake up, it is sometimes gone. Sometimes when your joints hurt you can wear an athletic brace. Sometimes shea butter rubbed in helps. It is hard. I find the natural treatments are best. I think the salt C protocol is the most promising. Still it is a struggle.
When you get mad and bitter all hope is lost. God gives the answers in nature. The best cures are in nature. They say sarsaparilla tea helps. You can try them all and see what works. Sunlight, exercise, I think all of these things help in their way. Probably hot baths with drawing salts also.
It can be a frustrating thing to have, maybe the most frustrating if you let it get to you. It is about being a fighter and trying to get from one moment to the next.
Reading this breaks my heart and also angers me so much in so many ways: 1. I came across this story after I was crying on my bed in unbearable pain and asked that I just die so that I could feel relief, it was a sign telling me to keep fighting for myself and for victims like Bryan. 2. In America, if you are not a celebrity or sitting pretty in the higher elite class there is this huge jagged mountain range in front of you that you must conquer. Yet, most don’t make it over to the other side. 3. The government, insurance companies, CDC, and many others should be tried for murder; the murder of hundreds and possibly thousands of Lyme victims.
You are in my prayers Bryan. Thank you for relighting the spark that went out inside me to fight back. Your family is my prayers also.
Sincerely,
A Lyme sufferer who almost ended it all.
Physician at Children’s cried with me today as she said, “I cannot offer you IV antibiotics for your son”. I believe in what he experiences but we cannot support treating this way. Cruel punishment to deny care. Stand up doctors and tell your superiors you cannot be part of this sham!!!
Hi, can I talk to you sometime?
I am a woman 51 years old with Lyme Disease for almost 30 years .I am sorry for the loss of your son . I understand why he did what he did. I think about this everyday. I am in so much pain . No treatment for me. Can’t afford out of pocket. and No LLMD in Las Vegas Anyway. Can’t afford travel. barely keeping our house and it is falling apart .All our money has gone to doctors just trying to find out what I Have.23 doctors later still no real diagnosis. Just A doctors Asst. Telling me she is sure that this is my illness even though I only got two lines on The Ilsa and western blot Not CDC positive so they won’t treat.I now also have systemic yeast infection and can no longer take antibiotics. The Pain is so bad and I get severe anxiety attacks and rage. Bad Rashes all over and very bad stomach pain .My hair is falling out .And have trouble eating ,food won’t go down. I cry every day and hope for this to end . I wish I had the guts to end it myself. This is not right, people should not have to suffer like this. I’ve tried Herbs not helping at all. Other treatments are just too expensive. I wish someone would help me. I’m scared. Scared to Live and Scared to Die.
The pain is horrific! Every calm moment that is pain free is such a relief but I live with the knowing that the torment awaits. There must be something that researchers know that can help. The longing to end this suffering grows. God help all those who live with Lyme. Our stories are most compelling. It hurts to know that so many are afflicted and we are surrounded by those who either refuse to acknowledge our condition or who are helpless to provide relief. Lyme viciously roars within us despite our best efforts to live and love as normal human beings. Lyme is cruel.
I was very close to blowing my brains out after 10 years of undiagnosed Lyme. It is hard to believe that I won’t end it if the treatment doesn’t work. I understand Bryans actions so clearly. It is impossible for people who aren’t in chronic pain to understand but for me it makes sense. It enrages me when I go to a doctor and they refuse to address my pain. It is maddening. They have no idea what it is like. They think that telling you to come back in a month will solve it. They wouldn’t last a week in our level of pain. Absolutely frustrating.
I was clinically diagnosed with Lyme ten years ago, but after countless regemins of antibiotics which are only temporarily effective and then being told by the fifth doctor “there’s nothing I can do for you” I again began searching for a new natural protocol. Recently I started doing the NB protocol which seems to be supported by extensive research, but I feel like I’ve shaken the hornets nest. The joint and muscle pain is so intense I was thinking about where I could get some cyanide tablets.
My family depends on me to pay the bills so I have to just pretend I’m fine and keep on trucking (I drive a semi) but honestly from day to day I don’t know if I can get out of bed and put my pants on. After reading Bryan’s story, I wish I could have connected with him… because after a while, nobody wants to hear it anymore unless they’re going through it!
(misery loves company)
My sympathy goes out to Bryan’s family and friends.
I too suffer from this debilitating disease. I can’t find a doctor to understand the agony I endure every day of my life.
It should be criminal to those who don’t educate themselves to help those of us who are dealing with Lyme’s.
Many days I ask God to take my life…end this craziness because of the lack of help from healthcare professionals and insurance companies.
There has to be answers and awareness to this disease that robs the life of the ones that are suffering.
I have lyme and fibromyalgia and i hurt so much what can i do for the pain am on all kinds of meds and i cant eat anythung without getting sick . I dont know if i can do this anymore .
Try dry needling. I’ve been having it done for the last three months and I am a different person now! I can walk again and drive my car!
My daughter screams and begs me to kill her. She said it’s unbearable mom please I’m begging you. It shatters my heart beyond words. Dr. Horowitz recently wrote a letter to congress . Let’s all pray this disease gets recognized for the deadly , unexplainable, unbearable disease it is!! In my opinion. ..the cdc is putting out there VERY inaccurate information and very incorrect so called facts. Simply stating they are lies and need to be updated.
I feel like I can’t go on anymore, this disease hurts so bad.
I so badly ache for you. I say this everyday to myself. I have had Lyme 40 years. All 5 kids born with it. Career, family, and finances lost. Only pain remains. Intolerable pain that medicine will not address. Now that we are in 2018, the opiates I required over the last 7 years are no longer available. Multiple hospitalizations for suicidality over last 2 months. No one would treat my pain there either, even then. Please don’t give up!!! There will be a change coming. I will hang in there if you do, OK?