January 3, 2018

Not Immune

January 3, 2018

Not Immune

by Erin Walker

Something is Not Right

 

As the wife of PGA TOUR player and major winner Jimmy Walker, I am used to supporting him during challenges. In April of this year, my husband was diagnosed with Lyme Disease.  It is my hope that by providing this insight into how we received that diagnoses and our journey, we can help educate others about this debilitating disease.

In November of 2016, my husband accepted an invitation from a good golf friend (now retired) to the King Ranch to go on a hunting trip. Jimmy is not much of a hunter; I can count on one hand the number of times in our 12 years of marriage that he has been hunting.

The guys had a great trip and the last thing to cross their minds was ticks.  Not being a super avid outdoorsman, DEET was not exactly on his list of things to take.

It is important to mention that at no time during his trip, or any point after, did Jimmy recall seeing a tick on him and never removed an embedded tick. In addition, he never saw the “bullseye rash” that sometimes accompanies a tick bite.  Because he never noticed any of these things, we do not know the exact timeline of the onset of his infection.

After his hunting trip, Jimmy hopped on an airplane and flew to Australia to play in the World Cup of Golf with Rickie Fowler.  When he arrived in Australia, he felt like he was hit with a very severe bout of the flu.  His body ached, he had fatigue and in general, felt terrible.  Jimmy felt fine when he left the U.S. so he didn’t bring any type of pain reliever or anti-inflammatory drugs with him.  After arriving, he was able to find some over the counter pain reliever, rallied through the week resulting in he and Rickie finishing second.

Through the rest of the winter he had flare-ups like the one he experienced in Australia.  I started to find it extremely odd that my generally healthy husband was getting the “flu” every other week. During Christmas Jimmy felt terrible (achy, headache, skin sensitive to the touch) and would nap often.  He was irritable and short-tempered.

Once we arrived in Maui for the start of the 2017 golf season, he felt better, had a bit more energy and his mood improved.  Who isn’t in a good mood in Maui?  But, while in Honolulu for the second week of the Hawaii swing, he was hit with another severe bout of flu-like symptoms and he even considered withdrawing from the tournament.

The diagnosis

This pattern continued throughout the winter. Good days, and bad days. Good hours and bad hours. His mood continued to decline and in hindsight, he has said he was possibly depressed.  We still aren’t sure if the Lyme caused the depression and mood issues, or if it was the fact that he felt awful all of the time. Jimmy had no energy to practice, so his golf suffered.  He didn’t have the energy to play with the kids or help in normal activities around the house.  Getting up to go to the golf course for his tournament rounds was the only energy he could muster and most days he felt like sitting down on the tee boxes in-between holes.

One of the biggest symptoms he was experiencing was brain fog.  From difficulty to remembering simple tasks such as leaving tickets for friends and family, to putting on a pot of water to boil and then leaving the house, he was experiencing these types of symptoms on a daily basis.

jimmy walkerIt has taken us awhile to quantify it, but Jimmy also started to notice what he described as a brain to body “disconnect.” He would especially notice these disconnects on the golf course.  Simple shots that he never had an issue with before were going very wrong.  These symptoms manifested itself in his chipping.  Jimmy traditionally has had an excellent short game, so he wasn’t sure what was going on. The dreaded “Y” word was even suggested.  His patience on the golf course was wearing thin and was prone to being visibly upset during his rounds.

(A side note – It wasn’t until roughly August of this year that we were even sure there was a connection between the Lyme Disease and the brain disconnects, but in July my mother forwarded me an article written in the Martha’s Vineyard Times.  The article cites Harvard Dr. Nevena Zubcevik, who runs a clinic for concussion patients. In the article, Dr. Zubcevik explains how PET scans of concussion and Lyme patients, show that the brain basically looks identical between the two patients. In essence, Jimmy has been playing golf all year with the same type of brain trauma as a patient with a massive concussion.)

After suffering from these symptoms for a few months, he decided to see his general practitioner (GP) for blood work.  At the urging of his sports psychologist, he was tested for Lyme at the same time.

Lyme is not common in Texas.  Getting the testing done in the first place required some mild arguing with his GP. (We have experienced multiple roadblocks since then, including when we tried to get our children tested as a precaution). His GP ran an extensive blood panel and the first positive test we received was for mononucleosis.  Mono is highly contagious and about 90% of the population has been exposed to the virus. Although we were surprised, at least we had an answer.  Or so we thought.

Curious if Lyme test had come back, Jimmy checked in with his GP on Wednesday night of The Masters.

Well, I was going to wait until next week to tell you this, but your test came back positive”, said his GP physician.

Needless to say, it was interesting news to receive as we were walking out the door to the Chairman’s cocktail party and on the eve of the first major of the year.  There was some relief but also confusion.  Was it Lyme? Was it mono? What was going on and what do we do next?

Ticks carry several strains of bacteria that can cause multiple infections and more testing was done to determine if any of these other “co-infections” were also positive.  After several more rounds of blood draws and a crash course in Lyme Disease, we learned that Jimmy had tested positive for Lyme, Mono, two different types of pneumonia, West Nile Virus and a virus common to children called CMV.

For the past four-plus months my husband had been trying to compete at the highest level of his sport with six or more fairly major active infections waging war on his body.  (Ok, so he gets a pass for being cranky, depressed and not really feeling up to doing the dishes at night!)

The treatment plan

Enter the specialty doctors into our journey. As one person on Jimmy’s social media posted, “Welcome to the very confusing and highly controversial world of Lyme!” That was an understatement.

erin walkerThe easiest way for me to explain this statement is by comparing it to cancer.  If a person is diagnosed with cancer they are usually offered options A, B and C. While the options are different, they are closely related.  With Lyme, the treatment options range from A to Z; CDC “routine treatment” to the vastly extreme, experimental and often very costly treatments.  What makes this step in the process even more overwhelming is the patient’s’ decision as to which path they want to take. Even after making a decision, the questions mount. Are we making the correct one? Is it going to work? Is Jimmy going to be able to play golf? Will the treatment make him more sick? A hundred questions without a whole lot of answers.

After talking to three different doctors, we decided to go with the “keep it simple, stupid” approach. He started the traditional Doxycycline therapy, but with the doubling the dose and length of treatment time recommended by the CDC for Lyme.

Being a fairly optimistic person (or he was in denial) Jimmy convinced himself that he could play golf on doxy.  The treatment had other plans.

One common side effect of doxy is sun sensitivity.  Starting a sun-sensitive drug in May is not ideal.  After taking a month just to get to a possible point of treatment, he was ready to get started.

Jimmy played one week of golf at the Players Championship and suffered second-degree burns.  His hands, neck, and ears blistered.  He was not only not feeling well from the Lyme, but felt like his skin was on fire from the doxy.

After The Players, the decision was made to shut down golf until he finished the medication.  No practice because he couldn’t be in sun. No chipping, no putting, no activity; his skin couldn’t handle the slightest sun expose.

While starting the doxy, we also made the decision to add in multiple vitamins, herbs and supplements to his daily routine to try to boost Jimmy’s immune system.  I have mentioned this process on my Instagram, @tourwifetravels.  His daily pill regimen since his Lyme diagnosis has consisted of roughly 40 pills a day.

After completing that hurdle, we decided to wait a few months and hope that the first treatment worked.  Testing for Lyme is highly inaccurate and outdated, so retesting his blood wasn’t  an option.  Most Lyme doctors use a patient’s symptoms rather than blood testing to make a diagnosis. We had to wait and see if Jimmy was going to continue to have symptoms after the doxy treatment.

Two and a half months post doxy, Jimmy was feeling better but nowhere near “normal.” He was still battling bouts of flu-like symptoms. Not for weeks at a time, but still daily.  He has dubbed those symptoms the “Lyme feeling” because he doesn’t quite know how else to describe them.  The flu-like/tired/lack of energy and drive feeling flairs up and goes away.  Often, that feeling and symptoms happen multiple times a day.  The “Lyme feeling” can last five minutes or all afternoon.  We have not determined a distinguishable pattern, nor is there anything that causes a flare up (alcohol, diet, sugar, etc).

By mid-August he was still having flare-ups and we (along with his treating physician) decided to reach out to two additional doctors for some ideas.

The Monday and Tuesday of the Northern Trust tournament week were spent running to Connecticut and Boston to see two different doctors – one a Lyme specific doctor and the other an infectious disease doctor. A more lighthearted “Lyme-fog” part of this journey we have been on is that these doctors appointments were actually supposed to be scheduled for the Monday and Tuesday AFTER Northern Trust and before the Boston tournament started, as to not interrupt his normal practice routine.  Well, Jimmy got the dates mixed up, so we were busy running around the northeast for the first few days of the first Playoff event. This story is a pretty good representation of how the year has gone living with my husband, aka the “absent-minded professor”.

After meeting with both doctors we have decided on a new treatment plan that includes “pulsed” tetracycline therapy; two weeks on the new antibiotic and two weeks off. This treatment will continue for the foreseeable future.

And that is where we stand today. He has done four “pulses” of the new antibiotic and four off cycles.  He is finally starting to feel closer to normal again. He still has bad hours, bad days, while he is on the antibiotics.  This makes sense when you learn more about Lyme, which is a “spirochete” infection.  In basic terms, the antibiotic agitates the infection until the infection gets smart and hides in tissue, blood, etc.  This is why he feels worse on the antibiotic instead of feeling better, and meaning the infection is still active in his body.

Pulsing the treatment is shaving off layers of the spirochete little by little until, hopefully, there is nothing left.  We have definitely learned that this whole ordeal is a marathon and not a sprint!  An infinite amount of patience is needed for the patent, as well as the caregivers.

Moving forward

Although we are both having to temper our expectations, Jimmy is thrilled to finally be feeling about 90% back to normal.  He has the energy to finally workout again and get back to a normal practice routine, which has not been possible for about a year.

This is our personal story.  What works for one person with Lyme, doesn’t necessarily work for someone else. But, the biggest thing we can do is share what we are going through.  We want people to be aware that this strange and horrible disease can happen to anyone.  Just because you don’t live in regions where it is prevalent, does not mean you are immune to this disease that affects over 350,000 new people a year.

While it is not my intention to make this story about me, I believe a caveat is needed. After originally writing this blog post, I was also diagnosed with Lyme Disease on December 15, 2017. Not wanting to make this post another four pages, I will update my blog www.tourwifetravels.com in the next few weeks with my own personal story and continued updates on Jimmy.


Erin Walker

Opinions expressed by contributors are their own.

Erin Walker is the wife of six time PGA TOUR winner and 2016 PGA Championship winner Jimmy Walker, a mother of two young boys, a competitive equestrian athlete and a business owner. Follow Erin on Instagram and Twitter at @tourwifetravels and her site Tour Wife Travels.


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