January 11, 2018
It’s been a little over a week since I posted my first blog post in about five years. The post was about my husband, Jimmy Walker, and his ongoing 14 month battle with Lyme disease.
As I type, I sit in my quiet house reflecting on the week. The response to my post has been overwhelming. We cannot thank everyone enough for the thoughtful messages, calls, texts and helpful suggestions. Truly, the support has been amazing.
But there were also pleas; pleas from so many sick people. Those pleas were simply to share. These stories help spread awareness for this horrible, underfunded, misunderstood, misdiagnosed, mismanaged disease.
And that is what we are trying to do. After more than five years away from writing, I felt compelled to tell our story. Not to garner sympathy — we don’t need sympathy — but because there are so many people out there suffering from this disease.
We are not alone in this battle. On TOUR, I know three other people that suffer from Lyme. One friend texted me after Jimmy’s story first came out to share that they had been to 20 different doctors, but when Jimmy’s story was made public they decided to get tested for Lyme. Sure enough, that friend’s test was positive.
Another friend suffers from the strain of Lyme that causes a lifelong meat allergy, caused by a bite from the Lone Star tick.
I understand one might have reservations about talking publicly about his or her illness. It’s hard to put yourself out there. You open yourself and your spouse up to critics, to the inevitable internet trolls, and at times, feeling like a leper.
But I’m powering through the negative because of those pleas for help. I want to help dispel myths, to raise awareness and hopefully make something positive happen from this whole horrible situation.
On to my story…
The weird thing with Lyme disease is that there are so many wildly varying symptoms. I think this is what makes it so hard to diagnose by mainstream practitioners. My husband’s symptoms are different from my symptoms.
It is hard to figure out which symptoms are related to Lyme, and which aren’t. Are they ALL connected? If so, does that mean that either Jimmy or I have had this for a lot longer than we knew? It is hard to say with certainty. The current testing isn’t accurate enough to tell us a definitive timeline.
I asked both of Jimmy’s doctors at the outset of his diagnosis direct and pointed questions; Should I be worried? Is this transmittable like Zika? We were told by one doctor that I had less than a 1% chance of my husband passing it to me. The second doctor who deals with Lyme day in and day out, also didn’t seem overly concerned.
There has been some research regarding Lyme being sexually transmitted, but the CDC emphatically says no. Maybe in a few more years they will revise that statement? There needs to be more research done to definitively solve the debate.
In late August, I woke up with three red bites on my torso area. Basically, all three were in the area where my bra band goes. One was under my left breast, one was on my rib cage and the last bite was towards my shoulder blade. I have no idea what caused the bites, as I never saw the bug. However, I know the bites did not come from a mosquito.
I didn’t think a whole lot of it because it wasn’t a stereotypical “bullseye” rash that is normally associated with Lyme.
I had three symptoms that predated the bites in August. Without seeing an actual tick, it’s hard to determine when I became infected. I have walked the golf course for 13 years, so it’s very possible that I picked up a tick that way. I am also a competitive horseback rider. Although I think less likely, it is possible I picked up a tick around the horses. Finally, we have dogs and those dogs get up on our furniture so it’s also possible that Jimmy or I picked up a tick that way as well.
The three symptoms that predated the bites are vertigo, mild joint pain and something I call “word search.”
I have been a mild vertigo sufferer for years. But this year has been different. I get waves of vertigo that make me feel like I’m going to fall over. I would be out walking the course this year and almost stumble because it would hit me like a ton of bricks. Do you know the feeling when you stand up too fast? That’s the feeling that would happen to me but it would happen while I go about my normal daily activities. (Side note – Jimmy has not experienced vertigo at any time during the 14 + months)
The second symptom is mild joint pain. I have a positive ANA Titer which points to some arthritis in my future so I’m not sure if this symptom is related to the Lyme. I am also an athlete and have been an athlete my whole life, so any mild joint pain I experienced, I just brushed off as kind of par for the course from ski racing and horse falls throughout the years. Joint pain is very very common in Lyme sufferers and it’s one of the most reported symptoms. (Jimmy also didn’t suffer any joint pain of note during the past 14 months.)
My third symptom is what I call “word search.” I equate it to “pregnancy brain” (female readers will understand what I mean.) I will be in the middle of a sentence and know what I want to say but the word alludes me, even simple words. For example I will say to my kids “Go get your milk, it’s in the …” I know what the refrigerator is and the word is on the tip of my tongue, but for some reason I can’t come up with it. This has pretty much happened since I was pregnant with both children, but I certainly notice it a lot more now. Maybe it’s Lyme related, maybe not.
After the bites in August a few new symptoms emerged.
Last year Jimmy had zero energy to work out. We would go to the gym and he would drag through the process. You could see it. The “zip,” or pep, during the workout was missing.
I started to experience similar symptoms this fall. I would go to the gym and my muscles wouldn’t cooperate. (Glutes activating? Nothing was activating!) There was no zip. They would leave me feeling exhausted, whereas, I would normally feel energized and ready to charge the day.
Part of me wondered if it was all in my head. I had been watching Jimmy for a year and I asked myself “is this some weird referring thing? Am I really feeling this way or just making it up?”
Another new symptom were the chronic headaches. In October, Jimmy and I took a trip to Italy. Our first real vacation (no kids! no golf clubs!) in six years. On the flight home, I got a headache and no pain relievers would make it better. After that day, I’ve had at least one headache a day (sometimes one that I would wake up with and last all day) from then on.
After telling my general practitioner about my headaches, a battery of standard tests was ordered, including an MRI. When all of those tests came back normal, I told him to run a Lyme test. I was the only one in the family that had yet to be tested.
I used the same lab that Jimmy used for his original diagnosis. I’m including this information in this post because we believe it is vital for an accurate test result.
The lab we used is called iGenex. You can order their Lyme test kits directly from their website, take it to your own doctor, have them draw the labs and they send it back to iGenex. This is exactly what I did. Since then, about a dozen other friends (or friends of friends) have done the same thing because they are experiencing symptoms that doctors don’t have answers for. iGenex is an extremely Lyme sensitive lab and often catches subtle Lyme infection that the standard CDC ELISA tests miss.
I had just arrived in Wellington, Florida to compete on my horses when I received the call from my doctor that my test had some back positive. I was shocked. I called Jimmy and he called his sports psychologist (who was the one to urge him to get tested in the first place). They were shocked as well. My symptoms were there, but very mild in comparison to Jimmy when he was diagnosed.
Like Jimmy, I also tested positive for mono. I have never suffered from mono at any point in my life. Roughly 90% of those that have the virus, yet do not experience symptoms. It’s not exactly understood, but most Lyme patients also test positive for mono at the same time.
My weekend with the horses wasn’t great. My mind wasn’t on my riding, it was on my health. With a lot of questions unanswered.
It’s been a wide array of emotions since that phone call on December 15th. I will dive more in to that at a later time.
As of now, I am in the middle of my doxycycline therapy. It has really magnified all the symptoms I’ve been having, along with adding some new ones. I’m trying to take it one day at a time. Sometimes it is simply one hour at a time, because I will be feeling decent one moment and feeling horrible the next.
In the grand scheme of things, we are lucky. Both Jimmy and I received the proper diagnosis before Lyme could do irreparable harm to our bodies. So many people with this disease are not as fortunate, and that is why we are sharing our stories. It may take some time but I know I will get better. When I have a bad day, I look at my husband who is back to his workout routine and about to start a full PGA TOUR schedule and I know I will get better.
Today, Jimmy starts his 13th year on the PGA TOUR. We don’t know how the year will go because he isn’t completely back to normal, but he is a long way from his misery last year.
I will head down to Florida today to try to compete on my horses. Since my symptoms are unpredictable, I don’t know if I will be able to ride or not. But, I know that sitting at home isn’t what is good for me mentally and physically, so even if I go to Florida and don’t jump a single jump, at least I #keepmoving.
January 4, 2018
Welcome to the (finally) revamped version of Tour Wife Travels.
As the wife of six-time PGA TOUR and Major winner Jimmy Walker, I started TWT in 2011 to provide a broad overview of our life on the PGA TOUR. The original blog mostly focused on where to eat, stay and shop in the cities we frequented.
Jimmy and I welcomed our first son in 2010 and our second in 2013. With the addition of two small Walkers, the days of eating in fancy, quiet restaurants and hours browsing shops in fun cities were over. Tour Wife Travels as it existed fell by the wayside and life with two small children, eating in and going to sleep at 9:30 was the new norm.
Fast forward six years and we finally feel like we have our head above water again! Our oldest is in first grade and youngest is in pre-K 4.
I am now a solid 12 year veteran of the PGA TOUR. And thus, there are far younger, trendier and more “blog savvy” women who are filling the “eat, shop, stay, golf” void.
Also as a 12-year veteran, I feel like its time to let readers in to the “real” Tour Wife Travels story. A more intimate view of our hectic life. Travel, kids, business, horses, and dealing with specific challenges we face, including my husband’s recent battle with Lyme Disease.
So, again, welcome to the relaunch of Tour Wife Travels and welcome to the chaos!