TOUCHED BY LYME: “Chronic Lyme disease steals life.”
Laurie, a Californian who has struggled with both chronic Lyme disease and colon cancer, states that cancer pales in comparison to the pain and suffering of chronic Lyme disease.
Laurie has formed a fundraising page for LymeDisease.org, telling of her Lyme journey, explaining why raising money for Lyme disease research is so important to her. Here’s her story.
Laurie’s chronic Lyme disease journey
It is daunting to write about having chronic Lyme disease, as in the early years of this disease I spent hiding it like a deep, dark family secret. I very quickly learned that people, employers changed how they treated you when they learned you were sick.
I put on a good face, acted as if I was “fine” and when the very bad days came, I would shut off my phone, pull the curtains, and crawl into my cave.
Imagine if you can, the worst flu you’ve ever had and then imagine having it day after day, year after year, interspersed with times of health when you think, “finally it’s over, i’ve got my life back”, only to get sick again over and over for 40 years.
When I was 25, I spent time painting landscapes in the Santa Barbara mountains. During that time I had multiple tick bites, but simply removed them – thinking they were harmless. One day, I noticed a strange rash and thought little of it. About a month later I came down with a terrible “flu.”
This began a journey that I could have never imagined. For the next 5 years, I crawled through my life with unrelenting extreme joint and muscle pain, severe fatigue, odd skin rashes, gastrointestinal issues, and a list of strange and changing symptoms that stole my life and my son’s childhood away. I spent over $50,000 in that five years alone pursuing every possibility of healing from fasting to clinics in Mexico to bizarre treatments. My library of “Get Well” Books is truly staggering.
I actually was a lucky one; something [not sure which treatment] helped….around the age of 30 I got better and was able to have a life. Now rather than being sick constantly, I would get sick every 6 weeks or so for about 4-6 days with bouts of a month here or there. But I was ecstatic to be able to live again!
Chronic Lyme disease steals a life fully lived
And live I did! Never knowing when you’re going to be sick is an amazing motivator to live as fully as you can. I did everything I could in my “well” times to grab life fully. I created a successful career, I went on wonderful adventures: kayaking in wild places; Mexico, Canada (most fun I ever had – solo kayaking adventures in Mexico), backpacking, learned to scull and did that each morning I could from my beautiful houseboat, danced, laughed, loved. I “gave up hope” at ever being well. While this may sound strange to most people, giving up hope allowed me to accept this strange and unknown illness and grab hold of the times I had. I stopped looking for a “cure” and put all my energy into living fully.
When I was 48, I was diagnosed with colon cancer. I am convinced that my 23 year fight with Lyme disease culminated in my body breaking down.
I was treated with chemotherapy and steroids (I was allergic to the chemo). Near the end of this 9 month treatment plan, I got extremely ill again. I remember a day sitting in the oncology unit, crying, knowing with certainty that my “old, unknown illness” had come back in full force – more severe than ever. My oncologist had no idea what was wrong with me. They sent me home with a “good luck”. I stopped my chemotherapy 2 months early because my “mystery illness” was so severe.
Cancer pales in comparison to the pain and suffering of chronic Lyme disease
Cancer and chemotherapy paled next to the despair of knowing I was facing this terrible dark place again – of constant pain, fatigue and whole body sickness. With cancer, i could still live life even though i might be facing death. But this illness was a living death – one no one knew how to help me with.
My search for a diagnosis began again in earnest. I was tested and diagnosed with Lyme disease, bartonella and babesia 15 years ago. I remember the day I found out. I was so happy to finally know what had been wrong with me for most of my adult life. It was like a miracle and I allowed myself to hope again. Hope that finally this would be over.
That happiness was misplaced. The last 15 years has been a journey of severe illness that destroyed me financially and deeply affected my relationships (although I am very lucky to have an amazing family and a few truly remarkable friends). Below you can see a pictorial history of this journey that included countless procedures, treatments, ER visits, surgeries, doctor visits – the list is unimaginable to most healthy people – but this is the life of a person with chronic Lyme disease (mine is not that unusual).
The truly most amazing thing: All the people I know with chronic Lyme disease keep trying year after year to get back that most amazing gift – good health. The people i have met with this disease are some of the finest people I have known – their persistence and courage is truly astounding.
Chronic Lyme Disease – Early Years Click on the image to see a larger image
Chronic Lyme Disease – Later Years Click on the image to see a larger image
I now know that chemotherapy and steroids can cause permanent damage to a person with Lyme making it much more difficult to get well and stay well.
It’s a simple and stark reality. Chronic Lyme disease steals life. Most days are a struggle to do the simplest things. My goals for a day: try to do all my treatments (which can take hours), work as much as I can, be kind, be grateful for my incredible family and friends, go outside, do something nice for someone, listen to good music, do what I can to educate people about Lyme disease and the need for research.
Chronic Lyme disease has changed me in many good ways: taught me acceptance and gratefulness, taught me what really matters in life (not success, money, status but simply love and kindness and of course health), taught me that i can only control how i feel and react to what comes my way – not what life gives me.
For those lessons I am deeply thankful…..but honestly I would give up all the lessons learned in a second to run out, grab a kayak and head to Mexico.
Please help me raise money for Lyme disease research.
Donate to Laurie’s page by clicking here.
Create your own fundraising page by clicking here.
The TOUCHED BY LYME blog is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
After writing a post about the lack of empathy in Lyme compared to cancer, I've been hearing more stories from people who've had both. They all say the same thing: Lyme is much worse. Laurie, I hope you can finally find your way out of this and enjoy years of better health. I've heard the general rule is 3 months of treatment for every year we went undiagnosed. I'm not hanging my hat on that, but it's better than thinking that a few months or a year of treatment is the ticket.
I once heard from a doctor who had treated both Lyme/ CFS patients and also AIDS patients. He said that often his Lyme/CFS patients were much sicker than his AIDS patients. Lyme Disease can progress to be a very serious illness.
I am with you all the way. I started to get sick at age 20. By age 35 I was bedridden and housebound until age 50 when I found a Crazy Dentist who was willing to help me, and help me he did. I am now 55 and up and walking around most of the time, but as is the course for Lyme, any little exertion, any little stress and I am flattened again.
LYME STOLE MY ENTIRE ADULTHOOD. I was pretty, gifted and smart. Now I am an older lady who would like to have some of the things I missed. Life, love, purpose.
Please contribute. It is because there are no good lab tests that people lose their lives to this infection.
Sue Bush, I realize it has been years since you posted, but I wanted to tell you I am so sorry you have lost so much to this terrible disease 🙁 I got sick at age 17 and was diagnosed at age 30 with lyme (misdiagnosed with CFS). I went into remission from age 31 to 35 and it was WONDERFUL! I loved going to work every day. People would ask how I could be happy all the time and smile so much. I always worked extra when needed because just working felt so social to me having lived my entire adult life being sick.
Going to restaurants, hiking, all the “normal” things healthy people take for granted. Wow! I am back in lyme hell the past two years and it sucks big time. I hope that you are feeling well and you are able to be out and enjoy life! My best to you 😉
Hi Laurie – thx for writing up your story and raising money for CALDA. I notice that my dates parallel yours. We are around the same age, got it around the same time, and found out around the same time, roughly. But I never had cancer, just Lyme. I wish better management for all of us so we can have as much of a chance to function as possible.
I am organizing the SF walk. If you can make it at all, whether for the early lunch or whatever part of the walk you can manage, or just to stay at the library, in the adult info area, or in the kids' ed area, you are invited!
Is it Bb/AIDS, or psychosomatic illness by brainwashed ticked off loved ones and/or health care systems that deem money and power is worth more than their neighbors, family, and friends.
It is what it is! (Bb)/AIDS Borrelia burgdorferi acquired immunodeficiency disease syndrome – one of the most debilitating painful and pathological bacterial syndromes known to man.
I am 47, have had severe chronic fatigue syndrome since age 11. I wish I were exaggerating when I say that it is agony, non stop. Now I have lupus and Sjogren's. But I don't buy any of it. I think it is chronic Lyme, but I've tested negative and no doctor will pursue further testing. I have 77 prescription bottles next to my bed. But the only thing that helps is a lot of sleeping pills so I can disappear for a few hours. I've never had a good day. Once every 6 or 7 years I'll have a few minutes of reprieve. This disease has taken away everything, my husband, my family, friends, my home and everything I used to have in it. I can't even die.
Deanna: I recommend the book "On Hope and Healing: For those who have fallen through the medical cracks," by Dr. Neal Nathan. Lots of good information for a person in your situation. Also, are you a member of any of the on-line support groups for Lyme and/or CFS? Could be useful. Good luck. DKL.
wow – I just found this now. Thank you for all your comments. I went to a Lyme doctor in Vancouver Washington several years ago and am still paying the bills…. didn’t help. Now what? At age 17 I pulled a ticked out from under my skin, but the thing is, I had already been feeling sick before that….. If anyone is still on this site, I’d like to talk. I live in Edmonton Alberta, but because of my health, I am now homeless too. Anybody near me???
Deanna – I’m from Saskatoon, SK and I’ve been seeing Dr. Rebecca Risk in Calgary. She is a Doctor of Chinese Medicine who had Lyme herself, treated it successfully, and now treats others.
Deanna-Please join a support group and ask the people in your area to help you find a Lyme-Literate-Medical Doctor!You can still take antibiotics and recover.My wife and I have both been sick for decades and have been treated now for 5-7 years and we are greatly improved.There are drs out there that will treat you,and much,most or all of the damage can be reversed.Don't give up!!!
How do you reverse the neurological damage?
deanna,igenex.labs,palo alto,calif best lab in the country!!!!!!!!!!!!!!!!!!!!
Deanna. check out lymetap.com. They offer financial assistance for testing. I am so sorry you are struggling so
I am a Doctor in Tijuana Mexico for 15 years treating Lyme Patients, I have seen almost 6,000 patients in this time, when I talk with the patient he almost always tell to me that one of the parents die with Cancer, I am thinking that LYME DISEASE allows CANCER to grow in your body because the inmunossupresion of LYME.
PleasePlease see spirochaetes.us
Dr. Lazo,
I treated patients with chemotherapy for their cancers for 4 years in the US (I am an RN). I was in remission from lyme at the time and there were MANY correlations that the patient had lyme. Especially lymphoma (which I know the EBV increases the chances a person will develop lymphoma). I have had patients with fibro, MS, sjogrens, CFS…etc. I have often wondered if Rituxumab could help lyme patients or just plain ole’ neupogen injections. Immuosuppression certainly is linked to cancer growth.
Manuel, I find this very intersting. My father died of Hodgkins disease when I was 11. Wow, could there be a connection there? Thank you for helping us Lymees. Our lives are passing us by while we are suffering in silence, too sick to help ourselves.
Laurie,
I ran into the following article: Why Your Dog Can Get Vaccinated Against Lyme Disease And You Can’t at http://www.wbur.org/2012/06/27/lyme-vaccine and thought that you might be interested.
Your Old Mailman,
Len
Me too, infected at 15, diagnosed finally at 32, after years of being treated like a hypochondriac. 22 years later, 3 rounds of IV antibiitics and 82x of oral with ensuing herxing. Too many lost/damaged relationships to count. The antibiotics just dont work anymore. So i take my supplements..and curl up in my cave and wait. No more husband, house,business, insurance. Just time…
A friend and retired nurse told me “your treatment and recovery process will be much worse with Lyme than it would even be cancer treatment”!
She has been the only honest practitioner with me. I too was lead to believe recovery would of involved my body healing after treatment.
This just resonates with me so deeply. Everyday I feel like I have to consciously make-up my mind all over again to accept my limitations and NOT give into the depression that I know is just a shadow away always. I have to make up my mind that each day will be the best day I can make it within the range of fatigue I may be feeling.