Video: Fighting Lyme Disease to Ride in 'Fatigue'

Dec 30, 2020
by Max Fierek  


Words by Max Fierek
Photography by Riley Seebeck
Video by Spencer Johnson


Fatigue

"Dad?"
"Son?"
"I hurt..."
"What hurts? Where?"
"My shins hurt, like a lot. Have your shins ever hurt?"
"Your shins hurt? What kind of 9 year old has shins that hurt?"

It's been 12 years and I still remember the conversation I had with my dad when I first felt the effects of Lyme's Disease. I was sitting in the passenger seat of our old white Silverado driving through Northern Wisconsin on a two-lane highway through fields of purple lupines that were so bright they looked like they had jumped off a canvas and into the dirt. We were heading home from a sailing trip in the Apostle Islands of Lake Superior, an absolutely gorgeous area that is a national hotbed of deer ticks and Lyme's cases.

I hate hiding behind excuses so dealing with Lyme's is something I have mostly kept to myself except for a few close friends and family, I have been treated on and off but it was always difficult for me because I was a kid and had the personal myth of being unstoppable and when I took the antibiotics they usually made me feel worse which then affected my ability to race. A few years ago I was getting ready to take the season by storm with EWS, US Nationals, and more lined up, I trained all winter long and put everything into being ready but after training for months, I realized that I was basically still lifting the same weights as when I started, I wasn't putting on muscle or anything. I hit my first race and got absolutely destroyed, I still had hope that EWS Whistler would be the one but between crashing and hitting my head in Stage one and my body being burnt out by the top of Stage two I knew I wasn't making it the whole day. In the transfer climb, it dawned on me all at once, I had been ignoring the Lyme's for years, pretending it wasn't real and pretending like it was all okay. At that moment I realized that I needed to focus on getting healthier and doing whatever I could to get better.

Fatigue

After being on heavy doses of antibiotics for several months and my body being so weak and in pain that trail riding became almost miserable it was taking me over 2 hours to do a "quick" Galbi lap in Bellingham which my friends could knock out in 45 minutes the idea for this project hit me. "If I feel this way there have to be others who feel the same" so I called up my good friends Riley Seebeck (Photos) and Spencer Johnson (Video) to see if they would be willing to help me tell this story. They are both originally from the Midwest and now live in Washington like me and are masters of their crafts so I figured who better than friends to help me share. I told them off the start that this project wasn't for sponsors and wasn't for advertising, it was about telling an honest story and bringing awareness to not only Lyme's but also to the fact that there are a lot of individuals who deal with illnesses every day and most of the time never show it. We agreed that telling the story and getting it out to as many sources as possible was the key to this project.

Fatigue

Part of why I wanted to team up with Spencer and Riley was because I knew that they had both dealt with serious conditions themselves. Spencer with Idiopathic Thrombocytopenic Purpura (or ITP), meaning that your blood doesn't clot like it's supposed to which meant as a kid he wasn't able to enjoy a lot of activities to the fullest for fear of injury. Riley being from Southern Wisconsin actually had serious Lyme's as well, to the point of partial facial paralysis, which he says he still notices now years later. I seriously can not thank them enough for working with me to bring the project to life and tell exactly the story I had in my head.

Fatigue

What's Next? Well as of writing this post I am for the first time in years actually genuinely starting to feel better, I have been lucky enough to work with a Lyme's Specialist in Wisconsin who has helped to make sure that I am taking not only the right antibiotics but also supplements and vitamins to keep my body happy. My goal is to be back in racing condition for the 21' season and I am thinking maybe to prove to myself that I am healthy again I need to do something absolutely grueling and out of my wheelhouse like the BC Bike Race, but we'll see!

Fatigue

Finally, I would really just like to thank everyone that helped make this project a reality. It takes a lot of people and a lot of passion to bring a project like this to life so thank you all so much for the help. It really does mean the world to me (and Velzy ^^).

To learn more about Lyme's and how to prevent it please visit https://www.lymedisease.org/

Regions in Article
Bellingham


67 Comments

  • 51 0
 I'm a veterinarian in Connecticut, I live 30 min from Lyme CT. We have been dealing w Lyme disease for years. I have a friend who is a MD that runs a Lyme treatment and research practice. He was involved in the vaccine research. Unfortunately the vaccine had an extremely high rate of causing the same effects that Lyme causes. In the end it was making people sick. The key with Lyme is education for prevention and early detection for not only one disease but other rickettsial diseases. Unfortunately, both in human and veterinary medicine we see concurrent infections of not only Lyme but anaplasma, babesia, Rocky Mountain spotted fever and others. An infection with one is bad enough. The Lyme vaccine in dogs only protects against Lyme, not the other diseases. In the end, then best thing is checking yourself thoroughly after riding and being in the woods. There's a ton of research on transmission time between the tick bite and the disease getting into our tissue. The key is finding a tick and getting it out ASAP. Then talking w a knowledgeable dr about further testing. States do testing on ticks for these diseases. If you pull a tick out of you, get it tested. Is usually free! The other part is drs knowing what I look for. I'll get off my stupid little soap box and end w this, make sure you check you undercarriage. Ticks like warm areas!
  • 5 0
 After a ride - get home and take a good soapy shower. One of the best things to prevent, correct me if I'm wrong.
  • 4 0
 @CantClimb: I do the same..and check every nook and cranny of my body, included places most people probably don't check well enough. I also spray down my shoes, socks, and clothes with Permethrin monthly during the summer..best preventative out there.
  • 2 1
 During the tick season I put all cloths, shoes, backpack, everything in a garbage bag until I wash the cloth or ride again. Sometimes I just leave backpack and shoes in the car so they can air out. I do a cloths check of myself before getting in the car to drive home too. We have cats so I really don't want to get a tick in the house. Another thing that helps is wearing light color cloths, makes spotting ticks while hiking or biking much easier.
  • 2 0
 Here in Canada from what I've been told you can get a tick tested for free if you bring it to the hospital but it takes something like like 2 weeks to get the results. By contrast I've also been told that if you get bit with a tick with Lyme you've got 48h from when you've been bitten to get on an antibiotic treatment if you want to actually cure it. Seems like a bit o a disconnect there.
  • 6 0
 Fellow CT rider. Have had Lyme three times the last 5 years. Of those three, only discovered a tick once, ended up getting the bulls eye only once as well. Symptoms were the same every time. Nagging headaches, lethargic legs, always tired. Stinks when I work and recreate outside, but I try and always remember to check before bed or when showering.
  • 4 0
 @friendlyfoe: It's not 48 hours to get on an antibiotic treatment. It generally takes 36-48 hours for the lyme disease to actually be transmitted: www.cdc.gov/lyme/transmission/index.html That's why it's so important to check yourself once you come back from the woods...if you find a tick and remove it within a day, it'll greatly reduce your chances of getting lyme. On the other hand, getting treated for lyme has the best success rate if you start treatments in the early stages of lyme. According to the global lyme alliance, stage 2 usually doesn't begin until several weeks or months after the bite, so you may have a bit of time before you need to get on antibiotics, but probably the sooner the better: globallymealliance.org/about-lyme/diagnosis/stages
  • 2 0
 @ICEC0AST: Third CT rider for the thread. I work on a golf course over the summer, which means plenty of walking through fescue and plenty of tick checks. I've always found that long socks, plenty of high-DEET bug spray (particularly on shoes, hats, and clothes), and wearing pants if possible, coupled with some awareness and a lot of luck, makes it way easier to stop ticks before they actually get to the skin. I've only ever had a few embedded ticks, but I've flicked more of them off my clothes before they could get to my skin than I can remember or count.
  • 1 0
 @friendlyfoe: It is a myth - no one will do the analysis because it is not reliable and the likelihood to detect infection is very low. What you have been told though is absolutely correct - the sooner you detach little bastard the better. The probabilities to get infected versus time it is on your skin are well studied as someone else mentioned above. Note that not getting a red spot does not mean that you do not have the Lyme and having the Lyme does not mean that your live is over. There is Doxycycline.
  • 18 0
 Kudos to Max and all involved in the making of this.

Hopefully you reach your physical goals for next year and can join the rest of the racers when racing (hopefully) gets back to some kind of normality.
  • 14 1
 Antibiotics are pretty effective if you get on them early. Just a general statement to most people out there.

I'm in post Lyme mode now. Months of painful brain fog and incredible fatigue. Starting to finally see light at end of the tunnel, I hope. There have been a few false dawns which is big part of the stress, "Lyme stress". Is very lonely and isolating illness, you can feel pretty good sometimes and appear normal but you fall back into a low period pretty quick.
  • 10 0
 Great story! I really hope they'll come up with an easy and complete cure one day. The percentage of ticks that carry Lyme's disease is growing every year, and with it the number of people getting infected. Doctors in my country (the Netherlands) are still somewhat behind the times on this topic, often misdiagnose Lyme's and wait too long with prescribing antibiotics. The last point is somewhat understandable, because we do have to be careful in prescribing antibiotics too easily, because of the risk of bacteria growing resistant.
  • 9 0
 Thanks for sharing your story, so familiar.

The short term memory loss is the worst part, having to write everything down, not knowing anyone's names, walking to the kitchen and forgetting why you are there.
The bouts of fatigue definitely come next.

The wondering what it feel like to be "normal", not have the fatigue, aching joints every so often, the short term memory loss.
I only have very mild symptoms compared to others who cant go out by themselves.

Best thing is when you head out and have an amazing run or an amazing few days of months without fatigue etc. you feel a million dollars.
  • 9 0
 There is alot of us out there that have struggled with this nasty underlying disease. We live in the northeast and now doctors just assume that basically every tick carries Lyme plus a whole host of other nasty bacteria. I was in the middle of going for an expert XC class run in the local XC racing series when I came down with it 2 races in. Same thing, ultimate fatigue. I don't want to sound like a crazy person that diagnoses these things on the internet but I'm betting alot more people have it than really know, as who hasn't gotten a tick on them in the woods in the northeast? It also effects different people different ways and can be crippling to some, and others just not know they have it. It's too bad diseases like this don't get more national attention, kudos for bringing it to light.
  • 11 4
 The sad thing is that there used to be a vaccine for Lymes in North America; despite there never being any evidence that it actually harmed people there were lawsuits which led to the manufacturer stopping making it (www.theatlantic.com/health/archive/2019/10/why-there-no-lyme-vaccine-humans/599503).

Who knows how many thousands of people have got Lymes and some will have died because of it. Thanks anti-vaxers...
  • 2 0
 By what I’ve learned about Lyme I don’t think you could make a vaccine for it. There also is multiple other bacteria and parasites that co infect with Lyme.
  • 2 0
 @neilbarkman02: My dogs get Lyme disease vaccines every year.
  • 3 0
 Lyme acts kinda like an auto immune disease where once it is in your body tissue your immune system starts fight that body tissue.
  • 7 0
 even though it reinforces their position, anti vaxers have nothing to do with it; the lawsuits were filed by people who actually got the vaccine.
  • 2 0
 Ya I guess It does work to make a vaccines for Lyme. Apparently the reason the human Lyme vaccine got pulled was cause the vaccine could potentially have caused your immune system to attack the protein in your body.@driveways:
  • 2 2
 It's really too bad that stupid lawsuits will deter any scientific advancements since no one and no company wants to get sued. Any given vaccine that's ever developed will have some adverse effects for a very small population. Yet, it is this small population of people who will stop or cause worries for everyone when things don't go their way. It's actually ridiculous way of thinking when the good for the few outweighs the good of the most.
  • 7 0
 We started to have ticks in southern Quebec 5-6 years ago. We are not too far from Vermont/New Hampshire/Connecticut after all. Global warming helps them spread to the North. The first one I caught on myself was in the summer of 2015 and I got infected by Lyme disease. Symptoms began to appear exactly 10-days after removing the tick from my body. Thankfully, I recognized what was going on (the big red rash or erythema migrans was very obvious, I had flu-like symptoms like fever, etc) and I rushed to the doctor immediately. The 2-weeks doxycycline antibiotic treatment worked super well and cured it completely. Fast intervention is normally very successful in treating this infection.

The real danger with Lyme disease is not starting the treatment fast enough. The initial symptoms are not all that bad (similar to a mild flu) and one might very well say "I'm not going to go to the doctor just for a flu", especially in you didn't find a tick or the erythema migrans (another clear indicator of Lyme disease) on yourself. Then if you don't take action it becomes much harder to cure/heal from it in the months/years later.

I only found a total of 3 ticks on myself over those past 5-6 years. It's not much, considering I ride/hike several times per week all year long.

The latest one that I found on myself was in April this year, after coming home from clearing dead leaves/doing Spring maintenance off a trail. Yes, they can appear as early as that. Leaves had not even started to grow on the trees, but just the fact that the ground was clear of snow and unfrozen was enough for those little pests to be active.

The treacherous thing about ticks is that you can inspect yourself after every hike/ride for years and not find a single tick. Then, you may let your guard up and shortly after, you catch a tick!

I can't stress enough how important it is for anyone who does outdoor activities to take a shower and inspect their body COMPLETELY (every crack, every location) after each hike/ride/outdoor activity FOREVER from now on. My personal tip : From March to December, make it part of your mental checklist every time you return from the forest or from the fields. No excuse, no "I'm going to check later". Clean and check yourself (and your kids, girlfriend, pets, etc). Period.

Even if you are wearing long sleeves, knee pads or whatever else, they may get under your clothes. 2 out of the 3 ticks that I found on myself were at places that were covered by clothes.

It's not something that will stop next year or in 5 years or even in 20 years. Ticks are here to stay, and with the growing population of whitetail deer in our area, they just become more and more spread.

Another concern for me is tourists/athletes coming from abroad and not knowing about Lyme Disease. The EWS were planning for a race in Burke, VT this year : a prime spot for ticks. The event got cancelled because of COVID-19 but I'm curious if they would have warned all the athletes about the danger of ticks (and told them it's a very serious matter) : I certainly hope so...
  • 5 0
 Although there's no current vaccine for Lymes; there's another tick-borne disease in much of Europe and Asia, Tick-borne encephalitis, which is almost untreatable and can be vaccinated against. www.who.int/health-topics/tick-borne-encephalitis

A friend caught this and was lucky to live; he spent weeks in intensive care and then months in a rehab hospital.
  • 4 0
 I’ve battled Lyme for about 6 years and for 3-4 of those years I didn’t know it. I finally am getting close to fully better. The physical symptoms are gone. I only have some of the mental affects lingering and they are compounded by Mold. I have tried quite a few different methods of fighting Lyme and one of the best ones is DNRS retrainingthebrain.com
  • 1 0
 Mind if I ask what some of your symptoms were before you knew you had it and what caused you to get tested? Thanks
  • 2 0
 @upstatesc-rider: My kids had similar symptoms such as leg pains/aches. Also allergic to gluten otherwise called "celiac disease" which is a very common symptom of lyme. I personally had a neck ache that just would not go away for weeks, and similar fatigue. Not huge fatigue but just not being able to push as hard as normal...
  • 3 0
 Massive Lyme paranoïa here, especially this year. Ticks left right and centre in my woods. And they are fans of genitalia, let me tell you. Merry Christmas!
Damn scary though... Luck is all you have to fight those little f*cks with.
  • 3 0
 and Permethrin.
  • 1 0
 @JohanG: We had a Brown dog tick infestation in our home for about 6 years. We tried every "natural" remedy under the sun and nothing worked. Finally we tried Permethrin, spraying the entire house and yard 3 times, over the course of a month and a half, and we finally got rid of them.
  • 3 0
 @SwampThAAng: Better living through chemistry.
  • 3 0
 I am a triathlete, physical therapist and certified strength and conditioning coach who suffered from Lyme for many years and went through many rounds of lots of antibiotics. They would worked while I was on them but symptoms would return a few weeks after discontinuing.
My doctor decided to try me on Disulfiram and it’s been amazing! Might be worthwhile looking into for youSmile
  • 2 0
 Oooh I feel you. I remember when Still's disease first hit me I wasn't sure if I'll be able to ride bikes and play guitar in my band. Weirdest period after main treatment in hospitals was about a year when first half of day hand and leg joints were so bad, I coudn't hold a full teapot, guitar neck or throw leg over a bike, closer to evening pain dropped down and I was able to something. Later it got better, and biking probably helped me to recover my knees - normaly I felt very clumsy and switching between "walking mode" and "sitting mode" was pretty painful, so first ~30 minutes of riding I was struggling with pain of moving knee over full cycle of it's movements, but then knees always started to feel better and it kept for couple of days after 2-3 hours of calm riding. And Fatigue was a very big problem until I started treatment with monthly infusions of Actemra. I needed to get offiicial disabled status to have Actemra fo free, because it costs 1000$+ monthly if buying yourself. Now I'm mostly ok, beside some shoulder problems, but still need that specific treatment for unknown time. Hope in next years I achieve no-drug remission. But what bothers me, since you had such disease, even if seems to be cured it can strike again after some years. So I'll have to be very careful with trying to expand my limits in riding.
  • 2 0
 That disease is horrible. I know a gal here in Michigan that was on the brink of not being able to live her life at all and she seems to have completely beaten it. She mtb races as well as adventure racing. I can’t keep up with her even on my fastest loops. If you want to reach out maybe I could get you too I touch. Her and her husband are close friends of ours. I don’t know what the docs did, her husband has it as well, they don’t talk about it much. Never hurts to have more information from people that have overcome such a thing. Good luck brother.
  • 3 0
 One problem with "lyme disease" is the test is unreliable. So it's a clinical diagnosis, meaning you have to base a diagnosis off symptoms.

This gives all the cray crays a chance to strike. Along with "chronic mono."
  • 1 0
 John Hopkins doing alot of Lyme research. Number one priority - a better, quicker, accurate test.
  • 2 0
 Wow - some incredibly thought out, intelligent and well-rounded content...and to think, this is PinkBike!

There is nothing I could possibly add to what has already been said. Heck, this is one of the very few stories where I actually read every reply.

We all take risks, starting from the instant the bike is in or on the car. Where I am...well, drunks, snakes, alligators, large pigs, cliffs, trees and on and on and on....while we take our precautions, if I die on the bike (any bike). I am good with that - just let it be FAST. As for those with Lyme....many, I do not envy any part of that.
  • 1 0
 Thanks for sharing! My mother is now in year 5 of battling lyme and while things are finally starting to look up, its been a long road for her. She's basically had a fever for half a decade now, add to that the fatigue and the rest of the symptoms and it's been hard for her to even enjoy the little things. Along with Lyme she ended up with 2 other tick born diseases she's been fighting as well. Nasty little creatures.
  • 1 0
 Thanks for the share Max. The struggle with all things is real. And your struggles revealed help all of us. It was great to meet you at the HeliDuro and great to follow you and Riley on the web. Even greater to see and hear your words again now. Oh. And bike riding! Godspeed my man!
  • 1 0
 Some (hopefully) good news on the Lyme disease front...a new and promising vaccine is in Phase II trials pretty close (as normal FDA approval processes go) to market:

valneva.com/press-release/valneva-announces-positive-initial-results-for-phase-2-study-of-lyme-disease-vaccine-candidate

If it comes to market and proves effective, will be a must-have for most riders and/or those who spend a lot of time in the woods.
  • 1 0
 Great project raising awareness of lymes and the riding was brilliant, one of the best edits I’ve watched in a while thanks so much. Working through recovery from lymes myself and have started to get back out again after 18 months off the bikehich is magic, at times I could barely walk let alone consider riding. After several courses of high strength antibiotics which made some impact, albeit with other side effects, I got to the end of the road with conventional medicine. 9 months ago I visited an alternative health practitioner and was out of breath with the half mile walk from the station to the practice, I can now manage 3-4 hour rides without extended recovery afterwards. I used to try riding and then was in a poor state for 1-2 weeks afterwards. For anyone in a similar position I wouldn’t rule it out so long as you are willing to make some lifestyle changes even if you are sceptical, as I was initially, it certainly helped my recovery. The other tip for joint pain is high strength curcumin, standard pain killers didn’t touch the pain I had in my joints anywhere near as well as a curcumin tablet daily. Was given that recommendation on a lymes forum and was the best piece of advice I have ever been given, still take a tablet daily to keep the inflammation at bay. The great thing with being a biker is you have all the incentive you need to get your health back and out smashing those trails again.
  • 1 0
 Thanks for sharing. I sent you a message on IG. It is not easy for a lot of us to talk about it, the fear, the depression and how hard it is not to be able to ride, when you really need a ride. I have been battling it for about 9 years, at first it shut down all my racing and a lot of my life, but with a good doctor I dug out of that hole, and with the help of my wife/family. I cannot say everything is perfect, I still have a lot of stomach issues, but all in all I am doing really well, I can ride as often as a I want, I can do the things with my kids I want, and it has been so good for my mental health. Great video.
  • 2 0
 A true hero...all the best in your recovery. Keep riding dude. It's so good to have things you love doing as part of your recovery. Go for it...
  • 2 0
 Keep fighting, Lyme is brutal. Being from Connecticut, I know many people that have dealt with it over the years (it’s named after the town of Old Lyme, Connecticut).
  • 1 1
 Went for trail hunting a while back in the forest, I had to go through an abandoned trail full of ferns. Ended up with 6 ticks. That's where they live (they wait that someone pass by to fall down from the leaves).

Apparently fighting the Lyme disease involve protecting Foxes, as they are the natural predator of rats, where ticks go and spread the virus.

And ticks gonna become more present with global warming...
  • 3 1
 LYME DISEASE IS A BIO WEAPON INVENTED BY THE GOVERNMENT-

LOOK INTO IT


(just in case, yes, this is sarcasm making fun of JRE)
  • 1 0
 I don't have Lyme disease but I have been suffering from chronic insomnia these past 7 years so I can empathize with anyone who has contracted this insidious disease.
  • 1 1
 Check out lomatium dissectum tincture, I have heard it can cure Lyme. Worth a try.

www.youtube.com/watch?v=QcJjhsd2bFA

barlowherbal.com
  • 3 2
 Hmmm, Michael Moore - I didn't know he's also an herbalist. Many thought Trump was their savior and injected bleach or drank Lysol. Big Grin
  • 2 2
 @CSharp: I've heard it also cures herpes - maybe you should check it out
  • 2 2
 @ashlemon: Ah, don't tell me - you're one of those...
  • 2 3
 @CSharp: You mean as opposed to an unproven concoction that will do god only knows what.?....hey, maybe they will hand out Gold Stars for the recipients....so, so much like Hitler's Germany.
  • 3 1
 @JustAnotherRiderHere: Ooookaay @@ if you guys like bleach or concoctions that cure your herpes, go for it. I'll take the scientifically proven vaccines any day.
  • 2 4
 @CSharp: Science used to say the Earth is flat, society would then kill those who did not agree....Science also found great things like Olestra, Vioxx and Atom Bombs (just to name a few).

Oddly, no one can dispute the similarities of the virtue signaling, the SJW's and the labels being almost identical to that of the 1930's Germany. History oddly does repeat itself (especially when folks do not learn from it).

On a good note, I did actually watch, in person as about two dozen C19 vaccines were documented to be distributed to "healthcare professionals" and then see it go right down the drain. Oddly, of all the vaccines only C19 requires for a crash cart and full medical staff to be on hand during the administering of the first (and second) doses.....
  • 3 0
 @JustAnotherRiderHere: "Science used to say the Earth is flat"

Are you f*cking kiddin' me?!? OMG! Literally, Oh My God! This is so much bullshit in so many levels, it's literally funny. Welcome to 2021! Maybe you'll be enlightened! Galileo was a true scientist back in the day when religious freaks shove crap down everyone's throats regardless of how wrong they were. These dumb religious freaks don't have any scientific knowledge but used fear to govern people.

In terms of what you saw, maybe they're handled by people of incompetence. You can't say 99% or even 80% of the health and medical professionals are incompetent. It's only the US administration leadership that was and still is incompetent. Less than a month before that incompetence goes away and before that happens. Most sane people know all hell's gonna break loose before things starts to get better!
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