What has Lyme disease left you wishing you could do?
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Welcome to LymeBites.com! I’m very excited for this new opportunity to put some of what I’ve been through in the past 6 months to use. I’m also excited about the amazing response I’ve gotten on this site, and the amount of people who are looking for some form of support. This is the first post, so you can all dip your fingers into the beginning of the story I’d like to tell, and what I’d like to accomplish with this website.
This is the beginning in a series in which I will discuss my recovery from Long Term Lyme Disease (LTLD).
I would first like to distinguish what the difference to me is between the commonly used term Chronic Lyme Disease (CLD), and what I am referring to as Long Term Lyme Disease. While making notes for this write up, there was a very distinct difference in my thought train, depending on the light in which I viewed my recovery.
I was diagnosed with Chronic Lyme Disease by a Lyme Literate Physician (LLMD) in October of 2009. At that time I was also given the diagnoses of Bartonella and Babesia. I was originally diagnosed with what I was told was an acute form of Lyme disease on June 11, 2009. I became quite ill on May 7, 2009, leading to almost 5 weeks of tests, baffled Dr’s and no answers until results from a blood test came back CDC positive for Lyme disease.
I will get to how I went from there to here in more detail as we go along, but what I consider my “Chronic Lyme Time”, is from the day my blood work came back CDC positive for Lyme disease until now. And I guess now is subjective, so as the story progresses, so will the definition of now.
The basic point of the story is that I was sick for a long time before I was diagnosed with Lyme disease. For this part of my story I’d like to focus on the overall recovery, not just what I’ve gone through in the last 6 months.
What I consider my Long Term Lyme Disease, is the period that covers the time I’ve been sick with Lyme. I don’t think there is any doubt in any doctor I’ve seen with any knowledge of Lyme disease that I have been sick with this disease for at least the last 7 years. But if you go back in my medical history, there are markers in time that could indicate active infections, as well as side effects from active infections, as far back as 33 years ago.
Long Term Lyme Disease to me defines what the disease has done to me and my life long term. Not since I became debilitated by the disease this year, but the slow decline of my mental and physical state over the past few years, and the struggle to keep my head above water that whole time.
My journey of recovery is not just the last 6 months of severe infection, but years and years of damage that was being done without me knowing it. There are two layers to my healing. The work that is being done in the here and now – the supplements, the antibiotics, the dietary restrictions, the fight every day to get back to a point where I can live my life again. Then there is the part of me that feels like to heal means to go back so far in time that I don’t know who the person I will find on the other side is going to be. I’ve heard many Lyme patients refer to this as “daunting”. I have to agree. But even more than that, it is exciting. I joke with people on my good days that it is like meeting myself for the first time. And there is a lot of truth to that.
I’m beginning to realize more and more that recovering involves learning about yourself one day at a time. I cooked tonight. Nothing complex, but it involved foil and the toaster oven, that qualifies as cooking in my book.
However, while doing it, the process felt so unfamiliar. Like I knew the steps to get my food cooked, but the process of doing it was not smooth. Each step was a bumpy transition to the next step, until eventually I had food on a plate.
When I looked in one of my cabinets, I saw some pots I didn’t recognize. I had never seen them before. I had no idea when I got them, or how they got in my cabinet without me knowing I had put them there. As the night progressed, I started to vaguely remember getting them for Christmas last year, and using them quite often when I first got sick in the spring and began my gluten free diet. The fog is so dense in my mind, that as far back as Christmas (49 weeks ago) things don’t quite register the way they should. I felt much clearer tonight in general, like I had come out of some of my brain fog, only to feel baffled by the things that have taken place while in that fog. It’s exciting to be clear, and know that you finally have a shot at living a life without the drag of Lyme disease keeping your mind down. But it’s also scary. It’s like starting a new life but in the body and location of your old life. It’s kind of a really sick twisted form of déjà vu.
Another example. While writing this, I decided to go into a certain location on my laptop and create an additional folder for the website; when I went to create it I was told it already existed. So I went in and looked at it, and was surprised to find a bunch of documents in the folder I have no recollection of putting there, let alone creating the folder itself. I had already done some of the work I was setting out to do tonight, but didn’t remember doing it. I am kind of interested now to see what else I find that will be like seeing it for the first time.
As my mental clarity improves, and I slowly feel myself slipping back into some version of my former self, albeit an improved version of him, I’m able to more clearly understand the message I want to share from my experience. And additionally to raise awareness about this disease. I find it so hard to believe that until I got sick I really had no idea about the controversy involved with Lyme, the extent to which this disease can really mess you up, or how widespread and dangerous it is. I think 99% of my friends and family would agree with that. It has been an enlightening journey for all of us, and luckily many of them are joining me in this endeavor with the knowledge and power they’ve picked up by my side. With me they will share my journey, my story, and most importantly my recovery.
I think the key to awareness is understanding. It’s hard to understand what Lyme disease really entails if you haven’t seen it first hand. I’m already suffering. I’ve done my time with Lyme, and will continue to do so until I am once again whole. But if I can be an example to help another person avoid having to endure this terrible journey, then that is what I am setting out to do. Through that example, the veil of understanding can be lifted, thus promoting an awareness to what is really going on with Lyme disease.
This is a work in progress, with the chronically ill at the helm, so we will be adding more to it in bits and pieces. Soon I’ll post some of the things that are being worked on now for the near future. If you have any ideas, or suggestions of things you’d like to know more about, please email me and let me know.
As we work on the site and add new features I’ll be sure and let everyone know so you can take full advantage of all we hope to bring to you on LymeBites.com. The next few days will adding helpful links for all of your Lyme issues and questions. Also some other great sites for Lyme awareness, and the stories of other brave Lymies who are sharing their journey with you. Every day for the next week you will find a bunch of new things, so be sure to come back often and see what’s been added. In the very near future we will be starting a newsletter with useful info and updates, and you’ll be able to submit your email address to receive this.
Again, welcome to the new site, and thank you for being a part of it!
Just a quick note with an update. Sorry it’s taken so long, with treatment and then the flu on top of it, as well as getting ready to move things have been crazy. Things are ready for it, just dealing with some of the technical stuff now, but ready to post some of the beginning things. Thanks for your patience with me on this. I am improving daily, so my energy levels are going up and my brain fog is getting better and better. I will let everyone know when the first stuff is posted. Thanks!