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  • Lyme Disease Stories

A. Geoffrey from Pennsylvania

Updated: May 3


How long do you believe you have had Lyme?

10 years - but in retrospect, I have shown symptoms my whole life.

How long did it take you to get a diagnosis?

Not long. I was able to get a diagnosis of Lyme Disease after my first visit to the ER. The diagnosis was then confirmed by my general practitioner.


Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?


In order of visits: ER; infectious disease doctor; rheumatologist; general practitioner.


My rheumatologist was honest with me and told me that if I worked hard and exercised, it would help me not only with rheumatoid arthritis but also with Lyme. He told me this “off the record” and it was the best advice I was ever given.

Anything else you would like to share about trying to find a diagnosis?


Don’t let doctors bully you into doing something you don’t feel comfortable doing. Remember that the doctor is YOUR client and though you are the patient, you still have the right to say, "no." YOU are your own best advocate. I’m lucky I had an easy time with the diagnosis process and I was very accepting of what Lyme Disease was. I immediately got confused listening to what others told me about Lyme, so I learned early on not to look online - and instead to just go with my instinct.


How long have you been treating Lyme for?

10 years.

What types of treatments have you tried?

IN THE BEGINNING:

  • I did 2 rounds of doxycycline.

  • Then, I did 6 weeks on PICC line for IV antibiotics. During this time, doctors began recommending longer periods of antibiotics but my body didn’t feel "right" on such an intense antibiotic course. At this time, I was 112 lbs and walking with a cane. If I kept this up, I knew I wouldn’t go anywhere but down.

  • I drove my wife to work each day and took my dog for a walk to keep moving.

  • I woke up every morning and got dressed and did SOMETHING (toe presses, a drawing, take the dog for a walk, etc).

  • I NEVER SPENT ONE DAY IN BED (AND STILL NEVER HAVE!!!).

  • Eventually, I experienced alternating patches of fog and clarity. It was somewhat manageable to live with.


ALTERNATIVE AND COMPLEMENTARY TREATMENTS

  • Cannabis flower, tincture, and oil for pain management, seizure control, concentration, and stress management. Because of this treatment, I am able to walk. It helps me manage symptoms of depression. It quiets suicidal thoughts and slows racing thoughts.

  • Acupuncture

  • Acupressure

  • Massage

  • Personal trainer

  • Meditation

  • 20-minute naps

  • Psychiatrist / counseling / therapy

  • Music - going to concerts / shows

  • Making art daily


EXERCISE

I don’t mean going to the gym and crushing it...but rather, noticing every part of your body by moving it. Challenge yourself to do more than those small movements every day. And if you can't, it's okay - In the end, it’s worth it.


  • Disc golf - I went through periods where I could play for pretty long periods of time. *THIS WAS GREAT FOR SOCIALIZATION TOO.*

  • Skateboarding

  • Snowboarding

  • Walks while juggling soccer ball

  • Chopping wood - I spent a year in the mountains with only wood heat during the worst winter in 30 years...I chopped and stacked 8 cords of wood.

  • Walking

  • Hiking

  • Soccer


NUTRITION

I’ve been a vegetarian for 25 years. I think that’s a major factor that allowed me to rebound so quickly from the antibiotics and maintain somewhat of a positive mindset / mind-over-matter attitude as far as coping with the pain. Without Lyme Disease, I would have never quit smoking and drinking soda/Gatorade. I would have never stopped eating sugar.

My diet:

  • No refined sugar

  • Minimal gluten

  • Minimal dairy

  • NO MEAT OR FISH

  • Coffee helps with my energy.

  • Cannabis oil - settles my daily nausea and stimulates my appetite...

  • I have a smoothie consisting of the following: fresh kale, beets, ginger, frozen berries, and mango, hemp protein, golden flax seed, acai powder, and vanilla ice cream for calories.

My eating is still spotty but I stay more hydrated. I haven’t had kidney stones since I stopped drinking soda. When I couldn’t eat at all a few years ago, I drank Ensure to get calories and maintain/gain weight.

POSITIVE LYME MINDSET

What does that mean? Having a positive dialogue with yourself and recognizing all the little things that you have. If you find yourself staring at the ceiling, be thankful that you have a ceiling over your head. Everything you do is worth it. Every little thing. You're always moving forward, even if it means taking two steps back. Do things that you enjoy even though you know you it might hurt the next day. Allow yourself the opportunity to fail and to not go out. Be thankful for your caregivers. Without my wife, I have no idea where I’d be. Without cannabis, I’d have suicidal thoughts and without my wife, I’d be dead. I’d never have made it this far and seen such hope for myself and for the community as a whole. I’m an actual artist now with a style and with something that can be developed. I’m proud of all the things that I have accomplished since my diagnosis.

MY DOGS, KOA and ELLA

Without them, I wouldn’t have that reminder that I’m a part of a pack - that I have a duty. There is something that I need to do, something I need to maintain. It’s hard to have that, ‘having children’ conversation when I’m in the throws of pain. I go through periods where I’m like, ‘yeah I’m ready,’ but then I hear a kid screaming in a store and it pierces my brain.

SOCIALIZATION

To battle Lyme, you have to out-think it; you have to rationalize it, cut the bullshit. You have make it realistic and allow yourself to fail but maintain the mindset of ‘I am doing this. I am doing this,’ and that’s where all the little things come into play. That’s where I can go on forever...there are plenty of times I have driven somewhere and had to stay in the car. But at least I made it out of the house. Sometimes, showing my face is enough. It took me a long time to realize that but sometimes just showing my face and saying, ‘Hi’ - and not apologizing for saying I have to leave - is all I have to do. And it’s always an accomplishment. It’s been not only humbling but also the backbone of surviving...the backbone of waking up every day and finding a reason to fight. And it took a long time to realize that - it’s the mind and the body and the soul working together as one through the fog, through the pain, through every night and day, through every waking minute of loneliness.


There are so many things to be grateful for in this life, including you, the online community.


List up to 5 of your biggest (past or current) symptoms:

  • Seizures

  • Chronic diffuse pain

  • Hypersensitivity to sound light touch in conjunction with PTSD

  • Chronic fatigue/depression /frustration

  • Swelling, fever, body overheating, inflammation related to rheumatoid

  • Arthritis


What is the biggest way that Lyme has affected your life?


For everything that it’s taken from me and stopped me from doing, it has given me something in return in the long run. So it’s difficult for me to answer this question. And I mean that on the most basic level.

What has Lyme Disease given me?

  • Patience

  • Acceptance

  • Gratitude

  • Appreciation

  • Courage

  • It has helped me to slow down and learn to not take things for granted...not to take things so seriously.

  • It's helped me to understand that in order to take care of my family and be a present person, I have to take care of myself first. If I don’t take care of myself, the amount of stress that I harbor will just make me sick again.

  • It’s given me the ability to literally teach myself how to hold a pen and draw again. At 25 years old, I re-learned how to hold a pen and draw. As frustrating as it was, it not only kept me sane, I have become a better artist than I could have imagined.


What is one thing you wish people knew about Lyme Disease?


TO PEOPLE WITHIN THE LYME COMMUNITY:

I wish people knew that if there is a cure, it is, for whatever reason, being withheld from us. If there isn’t a cure, which is what I choose to believe, maintain a positive Lyme mindset. When I stopped looking for a cure, I found the way to all the things I needed to make myself well. And that led me to people from both the past and the present - the few, special people who are really supporting me.

TO PEOPLE OUTSIDE THE LYME COMMUNITY:

I wish people knew that Lyme is real. I wish they were willing to listen to stories without judgment or without their eyes glazing over. I want them to know, ‘You have no idea.’ I wouldn’t wish this on my worst enemy. It’s torture - every day. It challenges the mind and body every day. It’s harder when people cut you out of their lives. People don’t want to hear about it. Talk about it three times and they shut you out, when a hug and a ‘Dude I’m sorry,’ would have made it better and the conversation would have moved on. I don’t wish people could feel the pain and go through things we go through. There’s nothing anybody can really say to make it better. I think people would be more willing to listen if we spoke more about our accomplishments and less about our frailties. We accomplish more than we realize. It just gets lost in the pain and the sickness. If we continue to create and accomplish small goals, I can tell you from experience that it will get better, little by little. And a little is not a lot, but a little is better than nothing at all.

TO PEOPLE READING MY STORY:

As strong as I sound in this, I still struggle mentally and physically every day. I am still unable to work and that is difficult for me, being a man, and wanting to work to support my family. Living with Lyme presents an absurd number of problems and sometimes my wife and I don’t get along, but there are still more better times than bad times. We’re figuring this out together and I’m lucky to have someone who’s willing to do this with me. I know it’s hard on her but I’m thankful for her everyday. I’m still a patient. I’m a patient of myself. I don’t trust doctors because I’ve done more for myself than any doctor who has tried to treat me, even the few who might have had good intentions.


Any advice for someone newly diagnosed with Lyme?

  • Stay positive.

  • Don’t lose hope.

  • Find something to work toward.

  • Be your own advocate.

  • Be your best advocate.

  • Going online to read continuous information will confuse you so try to not get too engulfed in the confusion.

  • If they tell you not to move, move. Just move your body. Just so you know it’s there. Wiggle your toes, flex your legs, abs, hands, face. That’s exercise. Do that as often as you can or don’t do it at all, but I promise you all those little things will make a difference in the long run.

  • Take the opportunity while you heal to learn something new - something to do with your hands, to keep your mind occupied, to work toward a goal, to accomplish something, and to keep always moving forward. Every small step counts.

  • Don’t be afraid to go outside, the outside will help you heal. I don’t know how to say that without sounding like a hippie. ;)

  • You are strong enough to beat this.

  • Nutrition is very important.

  • Know your body.

  • Do not drink alcohol.

  • Give your body the tools it needs to heal itself.

  • Get a psychologist. You’ll thank me.

*When looking at my list of alternative/complementary treatment, it might seem like I have an endless budget for treatment. Believe me, I don’t. Think creatively about the people you already know, keep networking, and barter, barter, barter.

**In most cases, the alternative therapies make a WORLD of difference and are cheaper than conventional medicine.


Fun fact time! What is your favorite thing to do in your free time?


Honestly everything I do has a purpose and everything I do either affects or is affected by my Lyme. It doesn’t affect all of my decisions, but it does affect most. However, finding balances of success and failure - risk versus reward - allows me to do things I never thought I’d be able to do again. Everything you do it worth it! Some of my favorite things to do are to draw, paint, to be active, and to be with my family.

Lyme has made me appreciate what’s really important in life.

To find out more about A. Geoffrey's journey, you may find him on Instagram as: @keepclobberinglyme.


***UPDATE - November 2018:


“No one said it was gonna be easy, but I’m not afraid to try, with the odds stacked up against, I'll have to fight, one life, one chance, gotta do it right!”

My name is Geoffrey, and I have been living with Lyme Disease, PTSD & Rheumatoid Arthritis for 10 years, as well as Bipolar Disorder and ADHD, for as long as I can remember. I survived because the fire inside me burned brighter than the fire around me - of the love, family and friends...because of gratitude and kindness...because of the good and great times...because of punk rock, hardcore, reggae, hip hop, skateboarding, snowboarding and soccer..because of all the little things that make life worth living...because of cannabis and alternative medicine...because of my desire to live free from myself...because of my dogs...because of my wife.

Life has been a long road through a beautiful struggle. Despite its ups and downs, it has all been worth it to get to where I am today, one step at a time. Life is good. I am blessed to wake up everyday and have my life back again.


Above all else, believe in God and know what that means to you. Believe in the kindness of strangers. And know that you are not alone - There are warriors and angels listening.


Keep On Always!


The journey of a thousand miles begins with a single step....take it, just do it. Don’t rest on your laurels, there is kindness everywhere.

Talk to those in the Lyme community, it is a very loving community who understand what you are going through because we have all been there. Trust your family and friends - they will guide you. rust your doctors and trust the process...no matter how much it hurts, Go towards pain - it’s a game for the self, and stay human.


Create Better Days because on the other side are the bluest skies. Send out a beacon of hope, know more, be Kind, be grateful and love unconditionally. Dance, listen to music, learn something. Find a way express your prayers on social media. You never know who is listening.


It's been a long, strange ride: left, right, front, and back again. I am very happy to be happy and to be here now. I am not sure what’s next because I want to play with my wife, dogs, family and friends, and enjoy each day as it comes.

But when I figure it out, you all will be the first to know.


I am grateful for this life because without it, I wouldn't be here to tell you that it is worth fighting for.

Shine up! Shine on! Shine bright like neon!

Everything you do is worth it! Every single thing...

Keep Clobberin’ Lyme!

All the best,

Geoffrey

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