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.
Wednesday, April 8, 2015
Wednesday, September 11, 2013
A Decade With Lyme
Today is a huge day for me in my journey with Lyme Disease. Ten years ago today, as I was undressing to get into the shower after a full and busy day, I discovered a large, oval shaped rash - raised, solid, bright red and 6-7" in diameter on my upper right hip and thigh, in my groin area. I had returned less than a week earlier from a trip to Boston, Massachusetts with my Mother, who was suffering from a rare form of lung cancer called Mesothelioma. September 11th, with all it's horrible implications for our Nation, is also a day I mark, now a decade ago, as one that has proven to change my life forever on a personal level. I had no idea at the time, but this was the day that Lyme Disease first reared it's ugly head in my life.
Ten years ago, I had traveled with My Mom to Boston, where she would be seen at Brigham and Women's hospital, considered leading authorities with this rare, and unfortunately at the time, always fatal cancer called Mesothelioma. My Mom and I had spent several weeks in Boston, and on days that she was feeling good, we had taken the opportunity to travel around New England, doing day trips to New Hampshire, Maine, Cape Cod and other places. While it was under extremely difficult circumstances, it had been a good trip where we were able to make many memories that I will cherish forever. Obviously, I had no idea about Lyme Disease, it's many controversies and how it would potentially impact my life. But even had I known, there was simply too much on my plate at the time, for me to spend any time thinking about or processing any of it right then.
On September 6th, 2003, after weeks of tests at Brigham & Women's hospital in Boston, my Mom underwent exploratory surgery to establish whether she would be a candidate for a much more invasive and aggressive surgery to remove her right lung, the lining of her lungs and heart, and a portion of her thoracic diaphragm. The hope was that she could have this surgery and possibly prolong her life for a few years. It wasn't a pleasant picture, but it was our only hope. Following an intense and extremely long wait at the hospital that day, the doctor came to discuss with me the results they had found, and I received the heartbreaking news that the cancer was now in my Mom's liver, meaning that she would not be a candidate for the surgery. What the doctor didn't say, but what we both knew, was that my Mom was dying, and cancer in her liver meant she didn't have a lot of time.
As I sat with her in recovery that evening, I tried to put on a smile. She would occasionally wake up and ask what the doctor had found. Holding her hand, I would explain that I didn't want to discuss the results with her until she was more fully awake - truthfully I had no idea how I would tell her. It was a terrible day, and a horrible time in my life. The next morning I packed our things at the house we were staying in a few blocks from the hospital, then went to the various areas of that vast hospital to get my Mom's records, films and other pertinent paperwork, which I would hand deliver to her doctor back home. Then I worked with the nurses on getting her discharged. A few hours later we were at the airport boarding a plane back to Coeur d'Alene, Idaho. We both cried most of the flight. I'm crying right now remembering. My Mother did eventually die from Mesothelioma, on December 24th, 2003. It was a horrible time in my life, and while I feel I have worked through it emotionally enough to have moved on with my life in a healthy way, it's something I've never really gotten over. I don't care how old you are when you lose your Mother, it's a huge loss for most of us. I miss her everyday, and I'm not ashamed of it. You grieve for a person to the extent that you loved them. I love my Mom, and she continues to be the single most influential person in my life.
It's sometimes hard for me to put all of this into perspective, since my trip to Boston would have such a huge impact on my life...the scope of which I truly had no idea of at the time. So, as the story goes, several days after returning home, on September 11th, 2003, a friend of mine suggested we go shopping - he took me out to lunch and to a mall an hour away in Spokane, Washington. I needed to get out of the house, away from the heartache and emotion of the situation, and it was good to think about other things. It was that evening that I first discovered that horrible rash, and it was that fateful day that my crazy odyssey with Lyme Disease began. You can read a little more about my story with Lyme before I knew it was Lyme here.
I'm not sure exactly when I got bit - I have my theories - but it's hard to know with ticks the size of poppy seeds. I just know that this is when I mark the formal beginnings of my journey with Lyme. Sometimes it's hard to believe that ten years in, we're still dealing with it in such profound ways. Despite the length of my journey, I consider myself lucky and blessed, for so many reasons. It's crazy to me that my Mom never knew that I had contracted Lyme while we were in Boston, and it's been really hard that she hasn't been here to help me in my journey with it. But I know that somewhere in Heaven, she's been doing all she can to help me in any way that she has been able to. That thought brings me comfort and strength.
So on this 10-year-anniversary that I'd really rather not be celebrating, I'm going to focus on my blessings. That I have a wonderful husband, two beautiful children, an amazing and supportive family, lots and lots of wonderful friends, and I'm getting effective treatment that has given me my quality of life back. Life is a journey, not a destination, and I'm determined to find my joy along the way. The last decade has brought amazing challenges, accomplishments, successes, heartaches, failures and the biggest blessings of my life: my husband and our two healthy babies. Did you know that I met my husband as a result of Lyme Disease? That's a story for an entirely different post, but it's a great one. The reality is, in spite of the difficulties, I wouldn't trade any of it away - not for all the tea in China! It's a wonderful life I am living with my family, and I am grateful for each and every second of it.
Ten years ago, I had traveled with My Mom to Boston, where she would be seen at Brigham and Women's hospital, considered leading authorities with this rare, and unfortunately at the time, always fatal cancer called Mesothelioma. My Mom and I had spent several weeks in Boston, and on days that she was feeling good, we had taken the opportunity to travel around New England, doing day trips to New Hampshire, Maine, Cape Cod and other places. While it was under extremely difficult circumstances, it had been a good trip where we were able to make many memories that I will cherish forever. Obviously, I had no idea about Lyme Disease, it's many controversies and how it would potentially impact my life. But even had I known, there was simply too much on my plate at the time, for me to spend any time thinking about or processing any of it right then.
On September 6th, 2003, after weeks of tests at Brigham & Women's hospital in Boston, my Mom underwent exploratory surgery to establish whether she would be a candidate for a much more invasive and aggressive surgery to remove her right lung, the lining of her lungs and heart, and a portion of her thoracic diaphragm. The hope was that she could have this surgery and possibly prolong her life for a few years. It wasn't a pleasant picture, but it was our only hope. Following an intense and extremely long wait at the hospital that day, the doctor came to discuss with me the results they had found, and I received the heartbreaking news that the cancer was now in my Mom's liver, meaning that she would not be a candidate for the surgery. What the doctor didn't say, but what we both knew, was that my Mom was dying, and cancer in her liver meant she didn't have a lot of time.
As I sat with her in recovery that evening, I tried to put on a smile. She would occasionally wake up and ask what the doctor had found. Holding her hand, I would explain that I didn't want to discuss the results with her until she was more fully awake - truthfully I had no idea how I would tell her. It was a terrible day, and a horrible time in my life. The next morning I packed our things at the house we were staying in a few blocks from the hospital, then went to the various areas of that vast hospital to get my Mom's records, films and other pertinent paperwork, which I would hand deliver to her doctor back home. Then I worked with the nurses on getting her discharged. A few hours later we were at the airport boarding a plane back to Coeur d'Alene, Idaho. We both cried most of the flight. I'm crying right now remembering. My Mother did eventually die from Mesothelioma, on December 24th, 2003. It was a horrible time in my life, and while I feel I have worked through it emotionally enough to have moved on with my life in a healthy way, it's something I've never really gotten over. I don't care how old you are when you lose your Mother, it's a huge loss for most of us. I miss her everyday, and I'm not ashamed of it. You grieve for a person to the extent that you loved them. I love my Mom, and she continues to be the single most influential person in my life.
It's sometimes hard for me to put all of this into perspective, since my trip to Boston would have such a huge impact on my life...the scope of which I truly had no idea of at the time. So, as the story goes, several days after returning home, on September 11th, 2003, a friend of mine suggested we go shopping - he took me out to lunch and to a mall an hour away in Spokane, Washington. I needed to get out of the house, away from the heartache and emotion of the situation, and it was good to think about other things. It was that evening that I first discovered that horrible rash, and it was that fateful day that my crazy odyssey with Lyme Disease began. You can read a little more about my story with Lyme before I knew it was Lyme here.
I'm not sure exactly when I got bit - I have my theories - but it's hard to know with ticks the size of poppy seeds. I just know that this is when I mark the formal beginnings of my journey with Lyme. Sometimes it's hard to believe that ten years in, we're still dealing with it in such profound ways. Despite the length of my journey, I consider myself lucky and blessed, for so many reasons. It's crazy to me that my Mom never knew that I had contracted Lyme while we were in Boston, and it's been really hard that she hasn't been here to help me in my journey with it. But I know that somewhere in Heaven, she's been doing all she can to help me in any way that she has been able to. That thought brings me comfort and strength.
So on this 10-year-anniversary that I'd really rather not be celebrating, I'm going to focus on my blessings. That I have a wonderful husband, two beautiful children, an amazing and supportive family, lots and lots of wonderful friends, and I'm getting effective treatment that has given me my quality of life back. Life is a journey, not a destination, and I'm determined to find my joy along the way. The last decade has brought amazing challenges, accomplishments, successes, heartaches, failures and the biggest blessings of my life: my husband and our two healthy babies. Did you know that I met my husband as a result of Lyme Disease? That's a story for an entirely different post, but it's a great one. The reality is, in spite of the difficulties, I wouldn't trade any of it away - not for all the tea in China! It's a wonderful life I am living with my family, and I am grateful for each and every second of it.
Friday, September 6, 2013
Sharing Our Lyme Disease Stories
Many times Lyme Disease can be isolating. It can make you feel like you're all alone. Alone to figure out what's wrong with you; Alone to find a doctor that will take you on as a patient; Alone in figuring out how to pay for it all, since it's usually not covered by insurance; and alone to figure out how to participate in and keep your life running as you're watching everything crash in around you. I've been there, and it's not a fun place to be. It can be incredibly dark and terribly isolating. This is why I believe that each of us who has been there in that horrible place, needs to start to stand up. We need to stand and provide others who are still in that place with a light on their path forward. My hope is, that the people within my circle of influence, mostly my immediate family and friends, understand enough about this illness that they can avoid it. But if they haven't been lucky enough to avoid it, I hope that in sharing my story, (sometimes et nauseam,) that I will be able to help someone else avoid this terrible journey of searching - sometimes for years - to find help, and hope.
The other reason that I share my story is that each of us with Lyme Disease can take heart. There are literally millions of people, all over the world, who have walked and are currently walking this path. They know what we're going through in all of these areas, because they've been through it themselves. And the good news, if there can be any good news, is this: the truth is beginning to come out. As each of us, in our circle of influence shares this information, the "truth" about Lyme Disease that we have discovered for ourselves - in the hardest way possible - the actual size and scope of this terrible illness, is going to be fully revealed. I have great hope of that. But we've all got to start talking about it! When I started this blog four and a half years ago, it was to keep a record of this journey for myself, and for any of my family and friends who might be interested in "updates." It's crazy to me that these days, people all over the world are reading my blog everyday. While I don't have huge numbers of readers, I'm hopeful that for the people that do read this, I've done my small part in being a resource, or hopefully pointing them in the right direction to find that help and hope.
These are a few of the reasons that I will continue to try to tell my story to anyone who will listen. I will be forever grateful to my friend - herself a fellow Lyme survivor, along with her husband - who shared her story with me, and suggested that I be tested for Lyme. I believe that she literally may have saved my life. This is why I've chosen to be so public about a fairly private matter. Because the organizations and people that we are taught to trust with our health, well being and very lives, (the NIH, CDC, and mainstream medicine) have NOT taken this seriously, and for the most part are refusing to talk about it, I believe it's up to those of us directly affected by it to get the word out. Think of all the millions of individuals and families dealing with this terrible illness. How many people could we inform and help or protect if each would tell someone else?
The major announcement by the CDC a couple weeks ago - acknowledgement that they have vastly underestimated the number of annual NEW Lyme cases - and that they now estimate new cases of Lyme Disease to be upwards of 300,000 each year in the U.S. alone - was a major step in the right direction. That information is nothing new to those of us in the Lyme community, who have been talking about that number for years...I believe that the acknowledgement is partly due to pressure by all those millions of people suffering with this illness. But there's still so much to be done in fully acknowledging the size and scope of this problem, like the geographic prevalence of cases across the U.S., instead of the isolated northeastern problem it is painted to be. Let's continue to move forward by spreading the word! Who have you talked to about Lyme Disease today?
Wednesday, September 4, 2013
The Adventure Continues at West Clinic
Hello friends and fellow Lymies!
I have to start by apologizing that I haven't been as diligent at posting over the summer, but the good news is, it's because I've been out living my life! I was reminded by my husband however, that it's important for me to continue to document my story, even when I'm feeling better. I'm going to try to be better at doing this. Lyme is a marathon, not a sprint, and it's something that we have to learn to live with...my plan is to kick it back into remission, so my body's in control, instead of being controlled by this illness. I feel well on my way to getting there, and I am so grateful to the wonderful staff at the West Clinic, and Dr. Jason West, for all the help they have provided me in working towards that goal.
Several weeks ago while I was at the clinic for my weekly treatment, I had the privilege of meeting 5 amazing fellow Lyme Warriors from several different states who have been following my blog! I consider it an honor to meet anyone who is currently doing battle or who has battled with this illness, and it is wonderful to be able to connect with fellow travelers on this crazy journey. It makes me so happy that in some small way, I may have been able to offer help or encouragement to someone who is in the midst of the chaos that Lyme causes. I have been there many times over the last ten years, and I'm so glad to be in a position to offer hope and encouragement that you CAN get better, and life can return to normal once again. It was while I was visiting with these wonderful people, that I was reminded that I haven't updated my blog recently. The truth is, I haven't been blogging much lately, (as I mentioned above) because I haven't been spending much time lying in bed or on the couch...I have been busy getting out living my life, and it has been fabulous!
We have had a wonderful, busy, happy summer with several camping trips, visits with family, BBQ's, parties and lots of other normal summer adventures and activities that most young families participate in. I am so grateful, and feeling so blessed. When you have experienced Lyme Disease, NORMAL is a good thing! I wanted to give a quick update about our summer, followed by an update on how treatment is going.
First, my husband and I started the summer off by taking a week-long camping trip in South-eastern Idaho. We left the kids with Grandma, loaded up the car and the dogs, and headed for Pocatello. Before we left for our camping trip, I did my weekly treatment. My husband and puppies waited anxiously for me out in the car while I got my IV's and then we were off! Our trip included several days of hiking, something that I love, but wouldn't have been able to even consider doing over the last five years. This was the first "aha!" moment, where we stepped back and said, "I'm really getting better."
The summer adventures continued with so many wonderful activities. A camping trip with friends, an annual family reunion, where I was able to WAKE BOARD and swim and enjoy so many little things that so many people take for granted! I'm including some pictures, in no particular order, so you can see some of the fun we've had. It has been amazing to feel my body becoming stronger and healthier. That's not to say that I don't continue to have occasional "bad days" or familiar, lyme-related aches and pains. I still wake up sometimes with stiff joints, sore muscles or feeling tired. After chasing my kids around all day and trying to keep up with maintaining our household and family, I often crash into my bed at night feeling exhausted. But it's a great feeling. It's great to feel exhausted because I've been doing things.
After 10 years of dealing with this illness, I'm a realist, (or at least I try to be realistic) about how I should be feeling as I'm "getting better." I would love it if there could be some point where I don't have to deal with any effects of this illness - but I don't think that's very realistic. I'm thrilled to know that for now, I can have three months of good and great days, couple with only 4 or 5 "bad" days. The truth is, on those handful of bad days over the summer, even though I didn't feel real great, I was still able to get out of bed and function - take care of my kids, clean up various things around the house, cook dinner, etc. In the past, on "bad" days, I wouldn't have been able to do most of those things. This illness can be incapacitating, both physically and cognitively, so I'm extremely happy with all the progress we've made over these past four months of treatment.
So the adventure continues. I'm currently doing treatment one day a week - my first two months I did two treatments a week. My treatments consist of IV and other therapies, usually an injection and other fun stuff. It may not always be fun, but for me, it has always been worth it. One of the things that I really enjoy about going to the West Clinic is the support and empathy that you are able to share in the IV room with all the other people that are there for Lyme. Some days I don't feel like being social, so I'm not. Other days I am more engaged and participate in conversations with other patients or just listen as other people talk. So many are there for Lyme treatment, and while we get our IV's we're able to swap stories, share insights and provide comfort and encouragement. I believe that's a big part of the support and understanding that so many of us with Lyme have a hard time finding.
I have to start by apologizing that I haven't been as diligent at posting over the summer, but the good news is, it's because I've been out living my life! I was reminded by my husband however, that it's important for me to continue to document my story, even when I'm feeling better. I'm going to try to be better at doing this. Lyme is a marathon, not a sprint, and it's something that we have to learn to live with...my plan is to kick it back into remission, so my body's in control, instead of being controlled by this illness. I feel well on my way to getting there, and I am so grateful to the wonderful staff at the West Clinic, and Dr. Jason West, for all the help they have provided me in working towards that goal.
Several weeks ago while I was at the clinic for my weekly treatment, I had the privilege of meeting 5 amazing fellow Lyme Warriors from several different states who have been following my blog! I consider it an honor to meet anyone who is currently doing battle or who has battled with this illness, and it is wonderful to be able to connect with fellow travelers on this crazy journey. It makes me so happy that in some small way, I may have been able to offer help or encouragement to someone who is in the midst of the chaos that Lyme causes. I have been there many times over the last ten years, and I'm so glad to be in a position to offer hope and encouragement that you CAN get better, and life can return to normal once again. It was while I was visiting with these wonderful people, that I was reminded that I haven't updated my blog recently. The truth is, I haven't been blogging much lately, (as I mentioned above) because I haven't been spending much time lying in bed or on the couch...I have been busy getting out living my life, and it has been fabulous!
We have had a wonderful, busy, happy summer with several camping trips, visits with family, BBQ's, parties and lots of other normal summer adventures and activities that most young families participate in. I am so grateful, and feeling so blessed. When you have experienced Lyme Disease, NORMAL is a good thing! I wanted to give a quick update about our summer, followed by an update on how treatment is going.
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| Outdoors enthusiasts from the beginning, it was great to go hiking again! |
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| Exploring Minnetonka Cave - something unimaginable just 2 mos earlier! |
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| Going out for my birthday - first time in three years! |
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| Playing with my kids at the water park! |
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| Family time outside, so happy to be strong enough to do this! |
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| An afternoon at the American West Heritage Center |
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| A great day of pony rides and lots of fun! |
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| Swimming with the kids at the family reunion |
First, my husband and I started the summer off by taking a week-long camping trip in South-eastern Idaho. We left the kids with Grandma, loaded up the car and the dogs, and headed for Pocatello. Before we left for our camping trip, I did my weekly treatment. My husband and puppies waited anxiously for me out in the car while I got my IV's and then we were off! Our trip included several days of hiking, something that I love, but wouldn't have been able to even consider doing over the last five years. This was the first "aha!" moment, where we stepped back and said, "I'm really getting better."
The summer adventures continued with so many wonderful activities. A camping trip with friends, an annual family reunion, where I was able to WAKE BOARD and swim and enjoy so many little things that so many people take for granted! I'm including some pictures, in no particular order, so you can see some of the fun we've had. It has been amazing to feel my body becoming stronger and healthier. That's not to say that I don't continue to have occasional "bad days" or familiar, lyme-related aches and pains. I still wake up sometimes with stiff joints, sore muscles or feeling tired. After chasing my kids around all day and trying to keep up with maintaining our household and family, I often crash into my bed at night feeling exhausted. But it's a great feeling. It's great to feel exhausted because I've been doing things.
After 10 years of dealing with this illness, I'm a realist, (or at least I try to be realistic) about how I should be feeling as I'm "getting better." I would love it if there could be some point where I don't have to deal with any effects of this illness - but I don't think that's very realistic. I'm thrilled to know that for now, I can have three months of good and great days, couple with only 4 or 5 "bad" days. The truth is, on those handful of bad days over the summer, even though I didn't feel real great, I was still able to get out of bed and function - take care of my kids, clean up various things around the house, cook dinner, etc. In the past, on "bad" days, I wouldn't have been able to do most of those things. This illness can be incapacitating, both physically and cognitively, so I'm extremely happy with all the progress we've made over these past four months of treatment.
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| 4th of July Campout |
The stories are always SO similar but never any less heartbreaking: most of us have dealt with this illness by ourselves for YEARS; most of mainstream medicine has relegated us to the "head case" category, or given us a label (chronic fatigue, fibromyalgia, auto-immune issues) then handed us an Rx for pain or anti-depressants and sent us on our way - leaving us to fend for ourselves with our ever declining health and/or abilities; if you've been lucky enough to find a doctor who really wants to help you, your insurance has probably refused to do so; and many times family and friends get tired of hearing about the constant, but ever-changing list of ailments and maladies, and they themselves begin to think you're a hypochondriac, or in the very least, overly dramatic. While I believe that in order to truly enjoy life, you've got to find a way to let go of all this mental and physical pain, frustration and disappointment, (it's certainly easier to do that once you've been correctly diagnosed and are finally getting proper and effective treatment!) I also believe that once in awhile, it's good to talk to other people who have experienced the exact same things. Getting treatment in this type of setting helps facilitate that element of healing.
For myself, I feel so blessed to have a good support system, friends and family who are trying to understand what we're dealing with, a loving and understanding husband, who has been, over the past almost five years, my advocate and champion in this battle. Someone who is a true partner in life. I also consider myself so blessed to have found effective treatment, that is allowing me to have a normal and wonderful quality of life. I don't feel like I'm ready to end my treatment, but I'm more than happy to continue to be able to experience life on my terms. I will be wrapping up my current round of treatment in October, and we'll see what we find out during my re-evaluation. But for now, I'm so, so happy with the results that we're seeing!
Monday, June 17, 2013
Treatment Update
Here's a quick update, since I haven't been blogging a lot lately. First I'd like to point out that I haven't been blogging a lot lately because I've been busy living my life and am spending a lot less time laying around in bed or on our couch. Last Monday, (seven days ago) marked my 8th week of treatment at West Clinic. While I still have days where I don't feel great, they are becoming so few and far between that we have almost gotten back into the groove of normal life! It has been wonderful and exciting, and I am so, so happy.
For those of you that are new to my blog, I have been battling Lyme Disease since late summer of 2003, although I didn't know it was Lyme until I was finally diagnosed and saw an LLMD in January of 2009. By that time I was extremely ill, with a whole litany of issues that had all but shut me down both physically and cognitively. I did two years of combination antibiotic therapy followed by a couple years of somewhat normal health, but I haven't ever felt back to "pre-lyme-self" in about a decade. I began to relapse in November 2012, and by March of this year I could hardly function, requiring almost constant care for both myself and my kids anytime my husband was not home. It was crazy, stressful, frustrating and gave me a sense of hopelessness that I believe I have never before experienced in my life. It was pretty bad.
So, eight weeks in, I'm feeling 85% better, and usually, other than my treatment days, (which are now only once a week) I'm practically back to normal. I've been taking my kids for walks to the park, planning outings with friends and doing all sorts of "normal" activities that I haven't been able to do for quite a while now. Last month, my husband and I went on a week-long camping trip where we did several different hikes (4 miles long) on back-to-back-to-back days. In the past, on a really good day, I might have been able to do one of those. But then I would pay for it by being out-of-commission for the next 3 or 4 days. To be able to participate in activities like that 3 or 4 days in a row, and continuing to wake up the next morning feeling good, has been amazing. It's been awesome to see that I really am getting my strength and energy back.
I will continue treatment for probably at least the next couple of months, but I'm happy to do it, since I feel like I am really improving, in ways I haven't seen in the last five years. It's very exciting, and I'm loving being able to participate in my own life again!
For those of you that are new to my blog, I have been battling Lyme Disease since late summer of 2003, although I didn't know it was Lyme until I was finally diagnosed and saw an LLMD in January of 2009. By that time I was extremely ill, with a whole litany of issues that had all but shut me down both physically and cognitively. I did two years of combination antibiotic therapy followed by a couple years of somewhat normal health, but I haven't ever felt back to "pre-lyme-self" in about a decade. I began to relapse in November 2012, and by March of this year I could hardly function, requiring almost constant care for both myself and my kids anytime my husband was not home. It was crazy, stressful, frustrating and gave me a sense of hopelessness that I believe I have never before experienced in my life. It was pretty bad.
So, eight weeks in, I'm feeling 85% better, and usually, other than my treatment days, (which are now only once a week) I'm practically back to normal. I've been taking my kids for walks to the park, planning outings with friends and doing all sorts of "normal" activities that I haven't been able to do for quite a while now. Last month, my husband and I went on a week-long camping trip where we did several different hikes (4 miles long) on back-to-back-to-back days. In the past, on a really good day, I might have been able to do one of those. But then I would pay for it by being out-of-commission for the next 3 or 4 days. To be able to participate in activities like that 3 or 4 days in a row, and continuing to wake up the next morning feeling good, has been amazing. It's been awesome to see that I really am getting my strength and energy back.
I will continue treatment for probably at least the next couple of months, but I'm happy to do it, since I feel like I am really improving, in ways I haven't seen in the last five years. It's very exciting, and I'm loving being able to participate in my own life again!
Sunday, April 28, 2013
Five Treatments Down...Sixteen to Go!
Thursday I had my fifth treatment for Lyme Disease at the West Clinic. As usual, I was pretty ill that afternoon and evening, with dizziness, nausea, muscle aches, light sensitivity and a terrible, splitting headache. But this time, by 9pm I noticed that I was feeling substantially better. Friday morning I awoke feeling refreshed and ready for my day...something that hasn't happened in a long, long time!
I could tell you all about the ASTONISHING improvement in my energy levels over the last three weeks; or I could tell you how I've gone from dealing with upwards of 30 Lyme symptoms in any given day, to perhaps 2 in that same time period. I could tell you how I go to bed feeling sleepy, ready to sleep and am now getting a good night's rest. Or I could tell you how I actually am having hunger pangs again when it's normal to feel hungry. I guess I would also need to point out that in spite of terrible exhaustion, insomnia is a major part of Lyme Disease; and that I had totally lost any appetite for food, including ever feeling "hungry," (in spite of not being able to lose any weight,) and that a month ago my husband pointed out that I never ate anything unless he made it and insisted I eat it. This was one of his major concerns that he wanted to discuss with the doctor on my first appointment. There are many other things I could point to or tell you about that have completely amazed us about the last three weeks.
For my part, I feel like telling you the things I've been ABLE to do in the last three weeks (that I have been UNABLE to do since I relapsed) might be the most effective illustration:
1) Wrestle, lift, dance with and carry my children around the house
2) Vacuum, sweep, do laundry, dishes and other household chores
3) Carry my children up the stairs and lift them into their cribs for naps & bedtime
4) Walk up the stairs without having to stop to rest halfway up
5) Walk around the house & up the stairs without being winded
6) Go to the grocery store, walk around and push the cart
7) Be able to get through the day without lying down once
8) Drive my car
In addition to being able to do all these mundane, ordinary every day things that most healthy people take for granted or even begrudge, I've also been able to do some really AMAZING things, especially considering that three weeks ago I could hardly take 5 steps out of bed or off the couch without being completely winded and exhausted. Some of the fun stuff includes:
9) Walking around the local mall for a couple of hours, including trying on clothes
10) Going out to dinner with my kids, husband and mother-in-law
11) Cleaning out and organizing my pantry
12) Canning 54 pints of food over the last week (a new hobby of mine)
13) Deep cleaning my house, going to bed tired and then waking the next day feeling rested and ready to go again
14) Going to a salon for a haircut & pedicures with my mother-in-law
15) Unloading groceries, luggage and kids on my own
16) Attending all three hours of our church services without being exhausted
17) Realizing that as I type this, I have NO PAIN anywhere in my body
I could go on and on, but I think that's enough to make my point. We are thrilled at the prospects of this new treatment. When we first heard about the clinic, we heard that people that were much SICKER than I were having these results. We were dubious. We were skeptical. We were nervous. It all seemed so strange and so different from everything we had been told that we needed to do. But there's something about having a debilitating illness that makes you open to trying just about anything. So we tried it, and now, I'm experiencing those same results that others had told us about.
Lest you think that I'm exaggerating, I will tell you that the day of treatment, and sometimes the day after, are a little rough....mostly "flu-like" symptoms for me. And, in my excitement and exuberance at having energy and feeling normal, I did "over-do it" one day, needing to take it easy the next day. But that's only happened once in these last three weeks. What I'm trying to say, is that while I've been feeling extraordinary compared to where I was three weeks ago, I don't want to misrepresent things. But I also need to qualify that statement by saying that compared with my two-years-long combination antibiotic therapy two years ago, this has been an absolute cake walk!
After dealing with Lyme Disease for a decade already, we're not naïve enough to think that this will be quick or easy. We've been warned that Lyme patients sometimes need 60 or 70 treatments before things resolve and they can go off treatment. By the time I have my re-evaluation in July, I will have done 21 treatments. But I'm perfectly ok with however long this takes. If I can enjoy this kind of quality of life, while I'm on treatment, it gives me so much hope for my future and getting back to my old self, the person I was 10 years ago before all of this started! I have so much hope of finally being able to organize my life and my family the way I have wanted to for so long, but have not had the physical or mental ability to do so. Finally, incredible hope for being able to be a hands-on Mom, to be able to really get down and play with my kids, and to be an involved and enthusiastic companion to my husband. These are the things that are most important to me, and they're the things that have been impacted the most by this illness. I can't tell you how relieved I am that I can pick up my kids when they cry for me, and I don't have to feel such deep sadness and guilt that I can't take care of them myself.
When all of this started happening back in November, I was disappointed. By February, when I had become virtually incapacitated once again, I was completely discouraged and feeling hopeless. Now, in light of having found this doctor and this clinic, I am so grateful for the timing in all of this. I realize that had I not relapsed while living where we do, I may never have heard about this doctor, this clinic or this treatment. People fly in from all over the world to be treated here, and we're only 90 miles away. I am so grateful for a loving Heavenly Father, who provides for our needs and wants. And while He doesn't always lift our burdens completely, if we will allow him to guide us, He will show us how we can get through them successfully.
My next treatment is tomorrow morning at 11am. I would never have thought in a million years that I would actually anticipate going to treatments, looking forward to them as I would any other great event in my life. But I do! It seems as though I can almost feel my body getting stronger and more capable. It has been absolutely wonderful. I'll keep you posted, but for now, things are really looking up.
I could tell you all about the ASTONISHING improvement in my energy levels over the last three weeks; or I could tell you how I've gone from dealing with upwards of 30 Lyme symptoms in any given day, to perhaps 2 in that same time period. I could tell you how I go to bed feeling sleepy, ready to sleep and am now getting a good night's rest. Or I could tell you how I actually am having hunger pangs again when it's normal to feel hungry. I guess I would also need to point out that in spite of terrible exhaustion, insomnia is a major part of Lyme Disease; and that I had totally lost any appetite for food, including ever feeling "hungry," (in spite of not being able to lose any weight,) and that a month ago my husband pointed out that I never ate anything unless he made it and insisted I eat it. This was one of his major concerns that he wanted to discuss with the doctor on my first appointment. There are many other things I could point to or tell you about that have completely amazed us about the last three weeks.
For my part, I feel like telling you the things I've been ABLE to do in the last three weeks (that I have been UNABLE to do since I relapsed) might be the most effective illustration:
1) Wrestle, lift, dance with and carry my children around the house
2) Vacuum, sweep, do laundry, dishes and other household chores
3) Carry my children up the stairs and lift them into their cribs for naps & bedtime
4) Walk up the stairs without having to stop to rest halfway up
5) Walk around the house & up the stairs without being winded
6) Go to the grocery store, walk around and push the cart
7) Be able to get through the day without lying down once
8) Drive my car
In addition to being able to do all these mundane, ordinary every day things that most healthy people take for granted or even begrudge, I've also been able to do some really AMAZING things, especially considering that three weeks ago I could hardly take 5 steps out of bed or off the couch without being completely winded and exhausted. Some of the fun stuff includes:
9) Walking around the local mall for a couple of hours, including trying on clothes
10) Going out to dinner with my kids, husband and mother-in-law
11) Cleaning out and organizing my pantry
12) Canning 54 pints of food over the last week (a new hobby of mine)
13) Deep cleaning my house, going to bed tired and then waking the next day feeling rested and ready to go again
14) Going to a salon for a haircut & pedicures with my mother-in-law
15) Unloading groceries, luggage and kids on my own
16) Attending all three hours of our church services without being exhausted
17) Realizing that as I type this, I have NO PAIN anywhere in my body
I could go on and on, but I think that's enough to make my point. We are thrilled at the prospects of this new treatment. When we first heard about the clinic, we heard that people that were much SICKER than I were having these results. We were dubious. We were skeptical. We were nervous. It all seemed so strange and so different from everything we had been told that we needed to do. But there's something about having a debilitating illness that makes you open to trying just about anything. So we tried it, and now, I'm experiencing those same results that others had told us about.
Lest you think that I'm exaggerating, I will tell you that the day of treatment, and sometimes the day after, are a little rough....mostly "flu-like" symptoms for me. And, in my excitement and exuberance at having energy and feeling normal, I did "over-do it" one day, needing to take it easy the next day. But that's only happened once in these last three weeks. What I'm trying to say, is that while I've been feeling extraordinary compared to where I was three weeks ago, I don't want to misrepresent things. But I also need to qualify that statement by saying that compared with my two-years-long combination antibiotic therapy two years ago, this has been an absolute cake walk!
After dealing with Lyme Disease for a decade already, we're not naïve enough to think that this will be quick or easy. We've been warned that Lyme patients sometimes need 60 or 70 treatments before things resolve and they can go off treatment. By the time I have my re-evaluation in July, I will have done 21 treatments. But I'm perfectly ok with however long this takes. If I can enjoy this kind of quality of life, while I'm on treatment, it gives me so much hope for my future and getting back to my old self, the person I was 10 years ago before all of this started! I have so much hope of finally being able to organize my life and my family the way I have wanted to for so long, but have not had the physical or mental ability to do so. Finally, incredible hope for being able to be a hands-on Mom, to be able to really get down and play with my kids, and to be an involved and enthusiastic companion to my husband. These are the things that are most important to me, and they're the things that have been impacted the most by this illness. I can't tell you how relieved I am that I can pick up my kids when they cry for me, and I don't have to feel such deep sadness and guilt that I can't take care of them myself.
When all of this started happening back in November, I was disappointed. By February, when I had become virtually incapacitated once again, I was completely discouraged and feeling hopeless. Now, in light of having found this doctor and this clinic, I am so grateful for the timing in all of this. I realize that had I not relapsed while living where we do, I may never have heard about this doctor, this clinic or this treatment. People fly in from all over the world to be treated here, and we're only 90 miles away. I am so grateful for a loving Heavenly Father, who provides for our needs and wants. And while He doesn't always lift our burdens completely, if we will allow him to guide us, He will show us how we can get through them successfully.
My next treatment is tomorrow morning at 11am. I would never have thought in a million years that I would actually anticipate going to treatments, looking forward to them as I would any other great event in my life. But I do! It seems as though I can almost feel my body getting stronger and more capable. It has been absolutely wonderful. I'll keep you posted, but for now, things are really looking up.
Tuesday, April 16, 2013
Yolanda Foster Speaks Out About Lyme Disease
Yolanda Foster, wife of Grammy-award winning songwriter and producer David Foster, and cast member of Bravo TV's Real Housewives of Beverly Hills was honored on April 9th with a Star Light Award from the Lyme Research Alliance at their annual Time for Lyme Gala, raising money for Lyme Disease research. Foster was honored with the award because she has spoken openly about her struggles with Lyme, her diagnosis and strenuous treatment regimen. You can read more about the awards gala here.
In her acceptance speech at the gala, Yolanda recounted her experience with Lyme in her usual and refreshing frankness, stating that Lyme Disease led "to some of the darkest days of my life."
In her acceptance speech at the gala, Yolanda recounted her experience with Lyme in her usual and refreshing frankness, stating that Lyme Disease led "to some of the darkest days of my life."
You can also watch as Yolanda briefly discusses her journey with Lyme Disease with host Andy Cohen on Bravo TV's Watch What Happens Live. Yolanda has been very public about her fight with Lyme since December 2012. You can read more about her and other celebrities in a previous post, Celebrities Get Lyme Disease, Too.
Sunday, April 14, 2013
1st Treatment at the West Clinic!
My first day of treatment at the West Clinic in Pocatello, Idaho began early. We live a little less than two hours away, so my husband and I got up early (and he took the day off from his Veterinary Medicine studies) so that we could make our 8:30am appointment on time. I was nervous, excited and a little apprehensive all rolled into one as we drove the 90 some miles to the clinic. During the drive, we talked about our five year trek since discovering I have Lyme Disease, how it has affected us, how we have learned and grown from the experience, and how we continue to be frustrated with the ignorance (and on the part of some medical professionals, arrogance,) that still surrounds this difficult illness. It has been quite the journey. We were both very hopeful at the prospect of trying a new approach to healing.
We arrived at the West Clinic just before 8:30am, along with 8 or 10 other patients, and walked into the busy waiting area by the front desk. It felt clean and professional, with friendly staff. The girl at the front desk asked for my name and told us it would be just a few moments while having me sign in. I had already filled out my new patient paperwork the week before when I received a packet in the mail outlining many of the various treatments offered and other helpful information, along with all my new patient forms. We also thought it was a nice touch that the packet included a map to the clinic and driving directions from Salt Lake City (the general route we would be driving.) It also included a brochure from a local hotel that has special rates for patients of the clinic.
This begun a busy day of meeting staff, including Alicia, the clinic's Lyme coordinator, (that's right. They have a Lyme coordinator,) whose daughter suffered with Lyme disease from age 3 until she was finally diagnosed and treated at the clinic at the age of 15. I could be wrong, but as I understand it, Alicia's daughter Sarah was the first patient treated for Lyme at the West Clinic. We had heard her story and were anxious for an update. According to her mom, Sarah has been symptom free for the last 3 and a half years and comes to the clinic once or twice a year for maintenance treatments. She now swims, bikes, hikes and enjoys a wonderful and normal life. You can learn more about Sarah's story by watching her testimonial: http://www.youtube.com/watch?v=dIkbzHMRN1s. Also, this news Story on West Clinic: http://www.youtube.com/watch?v=oTa_9SW3Nvk
Right off the bat, she said she could see that there was lots of "stacking" going on -- where the red blood cells were sticking to each other, clumped together. She explained that this kept them from getting the oxygen they are supposed to deliver around the body where it's supposed to go, which will cause extreme fatigue, and shortness of breath.
After several more tests, we met with "Dr. J" as everyone calls him - Dr. Jason West, the doctor that heads up the West Clinic. He was very sincere and took time to explain his philosophy and approach to healing. He explained that this was a totally different approach than the one we had previously tried, but that in his experience, it's extremely effective. Half of the clinic's patient base are Lyme patients from all over the US and the world, including places as far away as Australia. Dr. J explained that while he could identify spirochete cysts in my blood, as well as parasites in my blood cells, he didn't differentiate or distinguish between the bugs. This treatment was effective for all of them, unlike anti-biotics, so he wasn't really concerned with the specific types of bugs, just that they were there.
This is a good time for me to mention that, if you suffer from Lyme Disease, you probably know how expensive and difficult, (not to mention INACCURATE) the testing process is. This particular philosophy opens the door to so many very ill patients who have been denied care because they can't PASS the test to prove they've got Lyme. A test that the CDC admits is inaccurate up to 60% of the time! I have all my paperwork and test results from four years ago, actual documentation of my CDC positive Western Blot. I was one of the lucky ones that got a positive result. But those old test results didn't matter here: it's a shift in focus away from the specific bugs. The focus of this treatment is to change the environment, (your body) so that it's less favorable to the bugs, and strong enough to fight them off on it's own. I know...if you've got Lyme and you're reading this, your probably very skeptical. I promise you that we were, too. But after talking to so many people that have had success with this treatment, we felt like there's got to be something to it. The doctor talked to us for quite awhile, explaining everything, and took time to find out if we had any further questions when he was done.
Once we had met with Dr. J and gone over my tests and symptoms, they took me into a quiet room and got me set up for my treatment. Today's treatment would be IV Vitamin C, (to boost immune function, among other things,) Hydrogen Peroxide (to oxygenate the blood, among other things) and Hydrachloric Acid (to clean out the lymph system and kill the bacteria, among other things,) in addition to a session with the Rife Machine, which uses electrical pulses to kill bacteria. Dr. J said they were giving me a quarter of the dose we would work up to, but that it was better to ease in slowly. Got it. Once I was hooked up to everything, it was time to just sit back and relax.
When the treatment was over we headed home. About an hour into our drive, we stopped to get gas, and I got out to use the restroom. After a few steps, I realized that I felt very woozy, and had the familiar "floating" feeling that I had previously experienced with a herxheimer or herx reaction when I started treatment back in 2009. This reaction is literally caused by the "die-off" of the bacteria, because spirochetes release neuro-toxins when they die. When a bunch of them die all at the same time, the body becomes flooded with these toxins, and they can make you very sick. Symptoms of a herx can include sleepiness, nausea, headache, muscle aches and generally feeling terrible. They can also happen in the form of a worsening of all the Lyme symptoms you've already been experiencing. Many people describe it as the worst hangover you've ever had. I don't drink, so I wouldn't really know what a hangover is like, but they don't sound fun. :)
When I got back into the car, I told my husband how I was feeling. We were both actually happy, since this reaction meant that the treatment had been effective in killing bacteria. Once we got home, I crawled into my bed and tried to sleep it off. I was pretty uncomfortable that night, but woke up the next morning feeling a little bit better - still nauseated, sleepy, etc., but less miserable than the night before. My sweet husband had stocked our bedroom with soda crackers, my favorite Vernor's ginger ale, ginger candies and lemon water, all of which have helped in the past with my herx reactions. Whenever I'm experiencing a herx, I try to lay in my bed as still as possible, and let my body heal, reminding myself of everything that is going on inside me. During a herx, lying as still as possible is about all you want to do, since moving causes the nausea, dizziness and everything else to be worse.
Friday (the second day post-treatment) I woke up feeling about the same, but after a morning nap, I got up with energy, strength and feeling better than I have in months. I could do laundry, dishes, make my bed and clean my house for the first time in months! I got to play with my kids, change their diapers and carry them up our stairs without being totally out of breath. We were so happy! I almost expected that on Saturday I would be back in bed, just because I had done so much on Friday. The last time I was on treatment, I would have a good day and totally over-do it...causing me to spend the next several days out of commission. But Saturday I woke up feeling great, and after a full day of cleaning, organizing and playing with my kids, we all went out to dinner AND shopping, (something I haven't been up to doing in several months.) This morning, (Sunday) I attended all three hours of our church services, another thing I haven't been able to do in several months. By this afternoon, however, I started to feel like I was dragging again, and could feel myself getting out of breath on exertion. I'm really happy that I will be going back for my second treatment tomorrow. Obviously, it's too soon to really know how it will all work out, but I sure do feel a lot more excited about my future!
I will continue to document our journey through this treatment, since it's alternative and totally different than anything I've heard or read about Lyme over the last five years. Still, it makes sense to me, and my husband, who is a bit of a brainiac and skeptical of most things. Five years ago I wouldn't have been open to alternative therapy, but after everything that we've been through, I'm ready to try something different. Antibiotic therapy was difficult and extremely expensive, not to mention being hard on my body...only to end up back at square one two years after wrapping it up. If you or a loved one is struggling with chronic lyme disease, I would strongly encourage you to do your own research on this treatment. Be open-minded enough to look into it. I have provided a few of the links that we found as we researched it. For more information on Dr. Jason West, The West Clinic, and this alternative therapy, visit:
The West Clinic, Pocatello, Idaho: http://www.westcliniconline.com/
About Dr. Jason West/West Clinic: http://www.idchiro.org/dr-jason-west
Interview with Dr. Jason West: http://www.seasonsonthefly.com/blog/?page_id=89
Intravenous Hydrochloric Acid Therapy: http://www.tldp.com/issue/11_00/martin.htm
We arrived at the West Clinic just before 8:30am, along with 8 or 10 other patients, and walked into the busy waiting area by the front desk. It felt clean and professional, with friendly staff. The girl at the front desk asked for my name and told us it would be just a few moments while having me sign in. I had already filled out my new patient paperwork the week before when I received a packet in the mail outlining many of the various treatments offered and other helpful information, along with all my new patient forms. We also thought it was a nice touch that the packet included a map to the clinic and driving directions from Salt Lake City (the general route we would be driving.) It also included a brochure from a local hotel that has special rates for patients of the clinic.
This begun a busy day of meeting staff, including Alicia, the clinic's Lyme coordinator, (that's right. They have a Lyme coordinator,) whose daughter suffered with Lyme disease from age 3 until she was finally diagnosed and treated at the clinic at the age of 15. I could be wrong, but as I understand it, Alicia's daughter Sarah was the first patient treated for Lyme at the West Clinic. We had heard her story and were anxious for an update. According to her mom, Sarah has been symptom free for the last 3 and a half years and comes to the clinic once or twice a year for maintenance treatments. She now swims, bikes, hikes and enjoys a wonderful and normal life. You can learn more about Sarah's story by watching her testimonial: http://www.youtube.com/watch?v=dIkbzHMRN1s. Also, this news Story on West Clinic: http://www.youtube.com/watch?v=oTa_9SW3Nvk
After meeting with Alicia and discussing my case, including all the ups and downs of dealing with Lyme, she prepared a slide with a few drops of my blood to be reviewed under the clinic's dark field microscope. This was by far one of the coolest parts of the day. We were able to see everything she could see on the large monitor mounted on the wall. At the West Clinic they don't use the Western Blot, PCR or ELISA to determine Lyme. They can perform their treatment based on clinical diagnosis with your history, and they use the dark field microscope to evaluate what is actually going on - in real time - in your blood. It was really amazing.
Right off the bat, she said she could see that there was lots of "stacking" going on -- where the red blood cells were sticking to each other, clumped together. She explained that this kept them from getting the oxygen they are supposed to deliver around the body where it's supposed to go, which will cause extreme fatigue, and shortness of breath. 
In the slide she showed us of healthy blood cells, they are supposed to be all "floating free" and mine obviously aren't. We were also able to see little parasites actually wiggling around in my blood cells, most likely the babesia strains that I tested positive for back in 2009. Babesia is an infection of the red blood cells and can cause lots of problems. You can read more about the two strains of Babesia I have, Babesia Microti and Babesia Duncani, in these previous posts.
This is a good time for me to mention that, if you suffer from Lyme Disease, you probably know how expensive and difficult, (not to mention INACCURATE) the testing process is. This particular philosophy opens the door to so many very ill patients who have been denied care because they can't PASS the test to prove they've got Lyme. A test that the CDC admits is inaccurate up to 60% of the time! I have all my paperwork and test results from four years ago, actual documentation of my CDC positive Western Blot. I was one of the lucky ones that got a positive result. But those old test results didn't matter here: it's a shift in focus away from the specific bugs. The focus of this treatment is to change the environment, (your body) so that it's less favorable to the bugs, and strong enough to fight them off on it's own. I know...if you've got Lyme and you're reading this, your probably very skeptical. I promise you that we were, too. But after talking to so many people that have had success with this treatment, we felt like there's got to be something to it. The doctor talked to us for quite awhile, explaining everything, and took time to find out if we had any further questions when he was done.
Once we had met with Dr. J and gone over my tests and symptoms, they took me into a quiet room and got me set up for my treatment. Today's treatment would be IV Vitamin C, (to boost immune function, among other things,) Hydrogen Peroxide (to oxygenate the blood, among other things) and Hydrachloric Acid (to clean out the lymph system and kill the bacteria, among other things,) in addition to a session with the Rife Machine, which uses electrical pulses to kill bacteria. Dr. J said they were giving me a quarter of the dose we would work up to, but that it was better to ease in slowly. Got it. Once I was hooked up to everything, it was time to just sit back and relax.
When I got back into the car, I told my husband how I was feeling. We were both actually happy, since this reaction meant that the treatment had been effective in killing bacteria. Once we got home, I crawled into my bed and tried to sleep it off. I was pretty uncomfortable that night, but woke up the next morning feeling a little bit better - still nauseated, sleepy, etc., but less miserable than the night before. My sweet husband had stocked our bedroom with soda crackers, my favorite Vernor's ginger ale, ginger candies and lemon water, all of which have helped in the past with my herx reactions. Whenever I'm experiencing a herx, I try to lay in my bed as still as possible, and let my body heal, reminding myself of everything that is going on inside me. During a herx, lying as still as possible is about all you want to do, since moving causes the nausea, dizziness and everything else to be worse.
Friday (the second day post-treatment) I woke up feeling about the same, but after a morning nap, I got up with energy, strength and feeling better than I have in months. I could do laundry, dishes, make my bed and clean my house for the first time in months! I got to play with my kids, change their diapers and carry them up our stairs without being totally out of breath. We were so happy! I almost expected that on Saturday I would be back in bed, just because I had done so much on Friday. The last time I was on treatment, I would have a good day and totally over-do it...causing me to spend the next several days out of commission. But Saturday I woke up feeling great, and after a full day of cleaning, organizing and playing with my kids, we all went out to dinner AND shopping, (something I haven't been up to doing in several months.) This morning, (Sunday) I attended all three hours of our church services, another thing I haven't been able to do in several months. By this afternoon, however, I started to feel like I was dragging again, and could feel myself getting out of breath on exertion. I'm really happy that I will be going back for my second treatment tomorrow. Obviously, it's too soon to really know how it will all work out, but I sure do feel a lot more excited about my future!
I will continue to document our journey through this treatment, since it's alternative and totally different than anything I've heard or read about Lyme over the last five years. Still, it makes sense to me, and my husband, who is a bit of a brainiac and skeptical of most things. Five years ago I wouldn't have been open to alternative therapy, but after everything that we've been through, I'm ready to try something different. Antibiotic therapy was difficult and extremely expensive, not to mention being hard on my body...only to end up back at square one two years after wrapping it up. If you or a loved one is struggling with chronic lyme disease, I would strongly encourage you to do your own research on this treatment. Be open-minded enough to look into it. I have provided a few of the links that we found as we researched it. For more information on Dr. Jason West, The West Clinic, and this alternative therapy, visit:
The West Clinic, Pocatello, Idaho: http://www.westcliniconline.com/
About Dr. Jason West/West Clinic: http://www.idchiro.org/dr-jason-west
Interview with Dr. Jason West: http://www.seasonsonthefly.com/blog/?page_id=89
Intravenous Hydrochloric Acid Therapy: http://www.tldp.com/issue/11_00/martin.htm
Wednesday, April 10, 2013
My New Alternative Therapy
While searching for a new LLMD, we began asking around in our immediate circle of friends here in a small town in northern Utah. Before I get into anything else, I would just like to say that it is ASTOUNDING to me how many more people we know that actually know someone (other than me) who has been debilitated by and is currently battling Lyme Disease, over my experience four years ago. I think its a sad commentary on just how quickly this illness is gaining traction among the unsuspecting public. It truly is an epidemic that is being ignored.
Ok, that thought aside, I'll get on to the purpose of my post. As we began to talk to our friends, many people started contacting us, telling us that they had a family member or close friend currently being treated for Lyme. So we began to follow up on the information they were providing about different clinics, doctors and treatments, how much things cost and how they were all working out. We looked into several different options, but one clinic kept coming up as being very successful in treating Lyme. When we first looked into it, we discovered that they don't use antibiotics, so we thought that it wasn't for us. But when, in the space of one week, we received four other, separate, GLOWING reports about this same clinic from fellow Lymies, we thought that we better give it a closer look.
We discovered that they use many different alternative therapies in combination to do three basic things: 1) kill the infection, 2) detox the body and 3) heal & boost the immune system, so it can continue to keep infection under control. The doctor's opinion, that we can never fully eradicate the infection that causes Lyme disease - so let's heal and strengthen the body - so the immune system is properly equipped to deal with the infection on its own, really resonated with us. We did more research and found other information about the clinic, and continued to get referrals from various sources, also providing us with information, most of which I've listed below, with permission.
My husband is currently studying Veterinary Medicine and it's been interesting to get his perspective (and his professors' ideas & opinions) on various aspects of the Lyme puzzle. He's been researching the various therapies we've been looking into, and we're both very hopeful that this new therapy might provide some welcome relief. It's also something that I'm more comfortable with than drenching my body in antibiotics for the second time in four years. I have health concerns that I had prior to Lyme disease, and long-term antibiotic therapy is of particular concern because of that. My initial appointment is today, and I will give a full report on how it goes in a day or two.
Ok, that thought aside, I'll get on to the purpose of my post. As we began to talk to our friends, many people started contacting us, telling us that they had a family member or close friend currently being treated for Lyme. So we began to follow up on the information they were providing about different clinics, doctors and treatments, how much things cost and how they were all working out. We looked into several different options, but one clinic kept coming up as being very successful in treating Lyme. When we first looked into it, we discovered that they don't use antibiotics, so we thought that it wasn't for us. But when, in the space of one week, we received four other, separate, GLOWING reports about this same clinic from fellow Lymies, we thought that we better give it a closer look.
We discovered that they use many different alternative therapies in combination to do three basic things: 1) kill the infection, 2) detox the body and 3) heal & boost the immune system, so it can continue to keep infection under control. The doctor's opinion, that we can never fully eradicate the infection that causes Lyme disease - so let's heal and strengthen the body - so the immune system is properly equipped to deal with the infection on its own, really resonated with us. We did more research and found other information about the clinic, and continued to get referrals from various sources, also providing us with information, most of which I've listed below, with permission.
My husband is currently studying Veterinary Medicine and it's been interesting to get his perspective (and his professors' ideas & opinions) on various aspects of the Lyme puzzle. He's been researching the various therapies we've been looking into, and we're both very hopeful that this new therapy might provide some welcome relief. It's also something that I'm more comfortable with than drenching my body in antibiotics for the second time in four years. I have health concerns that I had prior to Lyme disease, and long-term antibiotic therapy is of particular concern because of that. My initial appointment is today, and I will give a full report on how it goes in a day or two.
Monday, April 8, 2013
ELISA & Western Blot Tests for Dummies
Testing is such a difficult aspect of getting a proper diagnosis for Lyme Disease. I was diagnosed (and properly tested) by an LLMD over four years ago and still haven't fully figured out the tests, how they work and what exactly the problems are. Obviously I understand everything well enough to be able to logically explain the problems with other non-medical types, but if you ask me specific questions, well, I probably wouldn't have specific answers. So I'm on a mission to better understand these tests.
I am a member of an online Lyme support group, and recently discovered a post that another member did to help people to understand the ELISA & Western Blot tests a bit better. I was very grateful for this information, and delighted to find in the comments that it was ok to spread the information around. So, I'm sharing it here!
"An ELISA test is a much weaker test than a Western Blot. ELISA looks at a single antigen (bacterial protein) to say if a patient has Lyme or not. In October 2010 a University of Medicine and Dentistry of New Jersey (UMDNJ) published a study saying that there are 13 strains of Borrelia (Lyme) Here is the story in Discover Magazine. The current ELISA tests are based on just one strain, B-31. The ELISA test uses a single antigen from this strain as an attachment point for a patient's antibodies. Clearly this recent discovery of many more strains could mean that the single antigen of the ELISA test is not shared by all the strains. This might explain why the ELISA test often misses cases of Lyme. Some companies even use a synthetic version of the antigen.
ELISA is usually done because it is a cheaper test at about $75, while a Western Blot can run around $200 to check for early & late antibodies (IgM (~$100) and IgG (~$100))."
"The Western Blot test runs a patients sample through a gel with the use of an electric current. The patients antibodies are complexed (bound) to broken up bacterial parts in the sample. The electric current drags these bound pairs through the gel. The different weighted pairs end up in different places in the gel with the lighter pieces moving the farthest. These different places are represented as bands in the gel. The bands create a pattern and there are patterns that indicate if antibodies have been bounded to Lyme bacterial parts. This can indicate if Lyme is present. The advantage of the Western Blot over the ELISA test is that far more indicators are examined than the single antigen in ELISA. Perhaps the 13 strains will differ in a couple of particular antigens, but when you start looking at many antibody complexes it will become more difficult to miss Lyme's presence.
Think about comparing cars, with different models representing different strains. If you check for only one thing like GPS navigation to define the vehicle as a car, you will miss a lot of models that aren't equipped with that feature. This one feature test for determining if a thing is a car would be like using the single feature ELISA test. But suppose you start comparing a bunch of features like GPS navigation, steering wheel, 4 doors, fuel injection, foglights, and Air conditioning as defining a thing as a car. With a greater selection of features you will properly identify more things as cars. This is like using the Western Blot test which is looking at a broader scope in identifying Lyme's presence through antibody activity."
The band information I got from a number of websites. The International Lyme and Associated Diseases Society (ILADS) may use only a subset of those bands. However the idea of the band usage to identify Lyme's presence is the same. This is one of the webpages: http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077
The entire original post, along with comments, can be found here: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=108294;p=0 The comments are very good, and include good dialog, if you're interested.
I am a member of an online Lyme support group, and recently discovered a post that another member did to help people to understand the ELISA & Western Blot tests a bit better. I was very grateful for this information, and delighted to find in the comments that it was ok to spread the information around. So, I'm sharing it here!
"An ELISA test is a much weaker test than a Western Blot. ELISA looks at a single antigen (bacterial protein) to say if a patient has Lyme or not. In October 2010 a University of Medicine and Dentistry of New Jersey (UMDNJ) published a study saying that there are 13 strains of Borrelia (Lyme) Here is the story in Discover Magazine. The current ELISA tests are based on just one strain, B-31. The ELISA test uses a single antigen from this strain as an attachment point for a patient's antibodies. Clearly this recent discovery of many more strains could mean that the single antigen of the ELISA test is not shared by all the strains. This might explain why the ELISA test often misses cases of Lyme. Some companies even use a synthetic version of the antigen.
ELISA is usually done because it is a cheaper test at about $75, while a Western Blot can run around $200 to check for early & late antibodies (IgM (~$100) and IgG (~$100))."
"The Western Blot test runs a patients sample through a gel with the use of an electric current. The patients antibodies are complexed (bound) to broken up bacterial parts in the sample. The electric current drags these bound pairs through the gel. The different weighted pairs end up in different places in the gel with the lighter pieces moving the farthest. These different places are represented as bands in the gel. The bands create a pattern and there are patterns that indicate if antibodies have been bounded to Lyme bacterial parts. This can indicate if Lyme is present. The advantage of the Western Blot over the ELISA test is that far more indicators are examined than the single antigen in ELISA. Perhaps the 13 strains will differ in a couple of particular antigens, but when you start looking at many antibody complexes it will become more difficult to miss Lyme's presence.
Think about comparing cars, with different models representing different strains. If you check for only one thing like GPS navigation to define the vehicle as a car, you will miss a lot of models that aren't equipped with that feature. This one feature test for determining if a thing is a car would be like using the single feature ELISA test. But suppose you start comparing a bunch of features like GPS navigation, steering wheel, 4 doors, fuel injection, foglights, and Air conditioning as defining a thing as a car. With a greater selection of features you will properly identify more things as cars. This is like using the Western Blot test which is looking at a broader scope in identifying Lyme's presence through antibody activity."
The band information I got from a number of websites. The International Lyme and Associated Diseases Society (ILADS) may use only a subset of those bands. However the idea of the band usage to identify Lyme's presence is the same. This is one of the webpages: http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077
The entire original post, along with comments, can be found here: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=108294;p=0 The comments are very good, and include good dialog, if you're interested.
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