Lyme Disease Then & Now...an Update on Me

The question I get most often in emails and various communications from those that follow this blog is, "How are you doing now?" Many people write me inquiring about a specific doctor, clinic or protocol I have personally followed for treatment, wondering if it CURED me. A lot of people mention in their communications that they are researching these different options, but don't want to waste their time/money/energy on something if it doesn't work.

Each of these messages evokes very mixed emotions in me. First, it feels a little overwhelming that anyone would base any portion of such a serious and personal decision on my experience. Second, I feel sorry for people who are so desperately in search of answers but seem to be asking the wrong questions - I've been there myself. Third, I feel badly that so many people actually think they can be CURED. There is so much that I want to say about each of these thoughts, that I'm going to try to break it down here.

To start out with, I want to scream from the rooftops that LYME DISEASE AFFECTS EACH OF US DIFFERENTLY!! No two cases are alike. Even if you and I both have Lyme disease, there are so many factors that determine what will or won't work for us. Our immune systems, genetics, co-infections, the time that we've gone undiagnosed, even factors that are far more difficult to measure such as spirituality, family support and a belief that you can get better, will affect how any treatment works or doesn't work for you. This is something that anyone battling Lyme disease needs to understand and internalize. One of the reasons that we're dealing with the mess that we're dealing with here in the Lyme lands, is that this illness looks different on almost everyone.

YES. There are commonalities. Similar symptoms in the short term & long term of the illness. But if you got 50 patients, all suffering from Lyme, in one room and started comparing symptoms, they would all be different. YES. Headaches, muscle weakness, pain, fatigue, short term memory loss, joint pain and neurological symptoms would probably dominate the conversation...but then you would start discussing stomach problems, abdominal pain, mastoiditis, hearing problems, vision problems, skin problems, blood issues, hormonal imbalances, foot pain. I could keep listing, but most people reading this are well versed in the fact that Lyme can attack any body system, and can masquerade as almost any illness or disease out there. Because the disease (or infection) affects each of us so uniquely, there will not be any one "all-inclusive" answer for each of us individually. It's one of the major reasons its so difficult to get an accurate and timely diagnosis, and it's one of the major difficulties in finding the right treatment modality.

I started this blog in January 2009 when I had so many questions, and precious few answers. I seemed to sense however, that I was at the beginning of a very long journey and I wanted to document it. I'm glad that I did, as it has provided me with perspective and a record of where I've come from. That has helped me on more than one occasion of feeling very discouraged with this seemingly un-ending path and all of its hills, pot holes and setbacks. The blog has taken on a life of its own as more and more people have read about my experiences. It makes me happy to be able to share what I have learned for myself, in my journey with Lyme. I'm glad that perhaps I can offer an additional piece in someone else's search for help and hope. But I cannot offer answers for anybody else. All I can do is hope to point people in a few directions that perhaps they have not looked into. Each of us has to thoroughly research our options and weigh them against our own personal experience and situation. I think we all know this already, but I think it bears repeating.

Today, almost twelve years after contracting Lyme disease, and a few months more than six years into actively treating it, I think I'm in remission. I AM NOT, AND HAVE NEVER CLAIMED TO BE, CURED. At present, there is NO CURE for Lyme disease...unless you've been lucky enough to have a doctor prescribe 21 days of doxycycline when you showed up at his office with a bullseye rash. Since you're reading this blog, that's probably not the case for you. It wasn't the case for me. So for those of us that have been sick for years, I hate to say it, but it's just the truth, to the best of my knowledge, there's currently NO CURE for chronic Lyme disease. Not for me, not for you, not for anyone. There are effective treatments. There are effective ways to manage it. Some people do extremely well on various treatments that have worked for their own particular brand of Lyme.  Others, in spite of their best efforts, continuously struggle. Theoretically, even if you're lucky enough to be a-symptomatic, there is always a chance of it coming back, because of the nature of the bacteria and its ability to adapt and hide in the body's deep tissues. The goal is to get things into remission...so the immune system is in control once again. This means that if at any point, the immune system loses control, (read: you get the flu, too little sleep or too much stress) you have the potential of dealing with a flare of symptoms, or a full-blown relapse.

Over the last six years, we have spent four years actively treating this illness. Treatment has included combination antibiotic therapy, nutritional supplements, injections and intravenous infusions including hydrogen peroxide, hydrachloric acid and massive dose vitamin C. Each of the treatments that we have done has helped with abating my Lyme disease symptoms. Each has involved discomfort and side-effects of some sort, including the well-know herxheimer reaction. None have been covered by insurance, and each is extremely costly. I would not change anything that my husband and I have done on our path to try to manage my illness. I am thrilled with the progress we have made. But I am not CURED. As I stated above, I think I AM in remission.

I recognize that I will never be the person I was before Lyme disease, and I can't expect my body to function the way it did before Lyme disease. Translation: I have to take extra-special care of myself. This is a really hard thing for a MOMMY to remember, let alone do. But I try to focus on drinking plenty of water, getting as much rest as possible, and taking quality nutritional supplements every single day. I personally believe that spirituality, meditation and prayer help immensely in the healing process, and I try to include these important elements in my daily life. Additionally, I utilize other alternative healing modalities such as a personalized hypno-therapy session (recorded as I worked with Dr. H at West Clinic) targeting immune function (don't knock it 'til ya try it) that I have on CD and try to listen to at night as I go to sleep. I have been doing this for over a year now. I also use the "cupping" method with DoTerra Lemongrass essential oil on a daily basis to help improve memory and reduce brain fog. I realize I may have lost a few of you with these last couple sentences...but having dealt with so many "closed minds" in the world of Lyme disease, we have become fairly open minded in what we're willing to try. And to me, the proof is in the pudding. I don't care if it can't be scientifically quantified or explained. If I try something and it seems to help me feel better, I'm open to utilizing that option. Why would you not? Even if it is placebo...and I'm inclined to believe that most of this stuff is NOT placebo. If it were possible to "think" myself well, I dang well would have done it a long time ago...I don't know anyone who would love to be my old, healthy self again more than me! Honestly, I really don't care what anyone else thinks anyway. All I'm worried about is how I feel and how I can function with the best quality of life possible.

For our purposes here today, I'd like to explain my personal "definition" of remission. You might define it differently, so here's how I define it: I still deal with (on an almost daily basis) fatigue, muscle aches & joint pain of varying degrees, although substantially less than before treatment! I still have problems with my short term memory, although these are much improved unless I am overly tired, stressed or otherwise sick. I still often don't feel like I have enough energy to get out of the house, and there are days where I feel like I just need to stay in bed. Because I live in reality, and I have two young children and a very busy husband working on a DVM, I rarely GET to stay in bed - but I have days where I wish I could. In spite of this, I also have a very good quality of life.

For the most part, I can do the things that I want to do on a daily basis without much thought for how we should be compensating for Lyme disease. Occasionally I do have "flares" of my classic Lyme disease symptoms, and when that happens I have started to take it as my body telling me its struggling, and it's time to be kind to myself. We manage flares by doubling and tripling up on my nutritional stuff, (I use a fabulous supplement that I am able to double and triple up on -- don't do that without making sure that its safe!) trying to get as much rest as possible, drinking lots of water and trying to purposely think positive thoughts! So far, we have done really well. I haven't had a treatment since late April of last year - so it's been an entire year that I've been off treatment, and I'm feeling consistently better on a daily basis than I have in years. Literally. But having said all of this, my husband and I are fully aware, and have planned for, my future need for additional and continuing  treatment in the event of another major relapse. For now, I am very pleased with where I'm at, and I feel lucky to be here.