What is a LymeSpouse? The simplest definition is that a LymeSpouse is the spouse of a person known or believed to be infected with a TBI. But realistically, the term "LymeSpouse" is not limited to just spouses, of course. Any person who is emotionally invested in an individual with a TBI may be affected in the same ways as a spouse. Hence, I believe all of these people will find these resources useful.
Why the TBI acronym? Lyme disease, or Lyme borreliosis, is actually caused by at least three species of bacteria belonging to the genus Borrelia. However, there are other diseases carried by ticks, that cause symptoms which often overlap with those of a Borrelia infection. Rather than limit the discussion on this site to Lyme Disease, use of the term TBI allows a more broad discussion of the many factors of these infections.
I am a middle-aged, self-employed male. I am a father, a step-father, and a musician. I am a LymeSpouse - the spouse of a TBI sufferer - and I am the creator of this website. While I hold no medical degrees or training, I have learned far more than I ever thought I'd need to know about Lyme Disease and its associated medical terms, conditions, treatment, tests and minutiae.
I honestly wish I didn't need to know these things, but in the end, it turns out it was the only way to support my spouse towards proper treatment of her Lyme infection. I've spent many, many hours in the pursuit of knowledge in this area, desperate to "fix" what was wrong, without even fully understanding what "fix" might mean. Along the way, I've learned a great deal about myself, and have gone through (and am still going through) a great many changes as I learn how to cope with how my spouse's illness has affected our family.
If you are interested, you may read more about my story as a LymeSpouse as well.
Officially launched on October 29th, 2011, this website is meant to help a LymeSpouse by utilizing:
Community Support. This is probably the primary motivation for this website. During my experience trying to help my spouse and deal with this "new life" forced upon me, I discovered it was rather easy to find online support - if you were the person that was directly infected with a TBI. However, as I went through each and every emotion possible, and with each and every mistake I made along the way, I found that there was a bit of a void when it came to support for people that are tasked with taking care of someone with this disease. I vowed, if time and energy would allow, that I would at least try to remedy that situation... thus LymeSpouse was created. If others can find comfort and support while they help their loved ones battle this insidious disease, the creation of this website will be very rewarding.
The LymeSpouse Protocol. Strongly related to the need for community support, I have observed, and experienced in my own life, how a TBI can cause a spouse to behave in ways that perhaps even they themselves would never have believed. The feelings of loss, anger, resentment and outright frustration are much less like a tsunami, and more like the silent, slow invasion of the TBI itself - little by little eating away at your being until you've become someone you never wanted to be. After realizing just how destructive this is, I determined that a "protocol" may be helpful to provide, in practical terms, the tools, approaches, and techniques that may help a LymeSpouse know what to expect and how to deal with the situation that has been thrust upon them - before it's too late, and the family unit, the relationship, the life you've had to set aside is destroyed.
It is my sincere hope that TBI sufferers will be able to point their spouses and caregivers to this site as well, when they've hit "the wall" in getting their spouse to understand their condition.
Other Lyme Disease/TBI Resources. If even some of the knowledge I've gained and online discoveries I've made can help others, then the creation of this website will be very much worth the effort. A simple list of online Lyme resources has been creaed and will continue to grow over time, to help Lyme patients and their caregivers understand as much as possible about their TBI.
TBI News. We only see an occasional news story from the mainstream media regarding TBI. There's a lot more going on, weekly, on the topic of Lyme Disease that may be of interest to you. We hope to list as many news items here as possible.
It is my hope that this not remain "my" website for very long; rather, I very much would like to turn this website over to the "LymeSpouse Community" -- those many thousands of people that are surely as frustrated and challenged as I have been, trying to make sense of what their loved one is going through -- as quickly as possible. Only through a collective effort can we be there for one another, until the day when (hopefully) a prompt, non-politicized, and thorough cure for these ailments is discovered.
I also hope for a great deal of involvement from others, because initially my "LymeSpouse Protocol" is going to be very "one-sided", based on my own experience and my reactions as a pretty typical male. As quickly as possible, I hope to make the LS Protocol much more balanced and useful to as many different people from as many walks of life as possible. I certainly am not "worldly" enough to do it alone!
In the meantime, we all need to work towards a "spouse protocol" of our own, be advocates for our loved ones, and take on what is surely a very broken system of care that leaves many people debilitated, and their families fractured. Let this site as well as all the other resources we've listed be a catalyst for real change.