Monday, May 17, 2010

Dramatic GI changes with Progurt

When my LLMD suggested I try Progurt, probiotics that would have to be shipped to me from Australia, I was a little skeptical. He said their probiotics are different than any other on the market and some of his patients had responded really well to it. But I still wondered "How is Progurt going to change the problems going on in my GI tract?" Anyway I read Progurt's entire website backward and forward and decided it was worth a shot. I really had little to lose (except the cost which was plenty) as I've become allergic to anything I eat on a regular basis and my list of okay foods has narrowed substantially in the past few months.

Since I have a milk allergy my doctor suggested that I put the progurt sachets in water and drink it instead of making it into a yogurt as recommended by the manufacturer. But having read Progurt's entire website I intuitively felt that I should follow their directions, I felt like if I was going to give this a try I wanted to try it their way. Their instructions were to use Ultra Pasteurized Whole Milk as a sterile base in which to incubate their probiotics. According to their website people with milk allergies can use progurt because the probiotics change the lactose in milk to lactase which is easier to digest. I sent them an email asking for any alternative to milk and they insisted there were no alternatives and that I would do fine on the milk based progurt. They gave me instructions to drink two sachets in water the first day, one the next, and then start consuming Progurt made from milk the next day.

Well I'm here to tell you that Progurt has changed my life. Since this isn't a medical blog I don't think you want the gory details of how I know it's changed my GI tract, but trust me it truly has. I've been totally amazed by the results. I haven't been digesting my food for many months and after just a few days I started noticing changes in my digestion, etc. I also started craving and eating more fresh fruit and fruit juices. I've had to cut all of these antioxidant rich foods out of my diet because they made me feel lousy. I am so so thrilled to be able to eat fruit again. The Progurt itself tastes fabulous. I feel like I'm eating dessert when I load it with seasonal fresh fruit and the granola I started making. In fact I'm sharing the granola recipe because I had to start making my own since I have a problem with nuts (a problem I hope to eliminate as my GI tract continues to heal).

Maple Granola
3 cups gluten-free rolled oats
1 cup dried unsweetened coconut chips
1/2 cup pure maple syrup
1/2 cup extra virgin olive oil
1 tsp sea salt
3/4 tsp freshly grated nutmeg
1 cup pecans or walnuts (if desired)

Preheat oven to 300 degrees. Mix together all ingredients and spread on baking sheet. Bake stirring every 10 minutes for 40 minutes.

This is not my recipe ... my sister got it out of some newspaper. If this is your recipe please take credit for it.

Susanne, Kim's sister, is our latest SpiroChick. She also blogs at Adventures of a Soap Artist.

Saturday, May 15, 2010

Walking On

Part III of Susanne's Story

What I have discovered is that the only way I can truly walk on into the abyss of the unknown is to place a deep and impenetrable trust in the Creator of the universe in whom I move and have my being. I cannot explain why Borrelia burgdorferi made its way into creation, just as I cannot explain why natural disasters have their place in the universe claiming thousands of lives at a time, or why murderers grow up to murder. There are plenty of Biblical scholars out there who will try to explain this. I cannot.

But this I know: the Creator of the universe has not stopped creating. He takes the good, the bag, and the ugly stuff of life and weaves it into a tapestry of beauty. I’ve seen it in my life and I’ve seen it in the lives of countless others. The small piece of my life saga that I shared in Part I and Part II I see now through a lens of incredible grace and beauty. All the pain and turmoil has been used in my life to dramatically change who I am. I cringe at the early years of my marriage when I demanded that life happen to my drumbeat. My mantra was, “it’s the road to perfection, and you’re on it.” I cringe and now I can laugh at how incredibly self-absorbed I was. And really what’s perfection anyway? What do you do once you get there? I don’t even long for it anymore! Praise Jesus! It remains in my mind as a crazy notion of misplaced desire.

How did chronic pain and suffering teach me this? By having things rarely go my way, and then finding the beauty in the way it went. Of course it took years for me to see the beauty. Thankfully I had precious people around me showing me and helping me to find the eyes that could see the beauty. This is just one small storyline among the many storylines of beauty woven through pain. But I’ve grown to have this confidence in the God of the universe who is compassionate and loving and good at every turn even when the circumstances of life seem contrary to this truth.

So how do I face the journey ahead with Lyme disease and all? I guess I’d like to be like Captain Jack in the second Pirates of the Caribbean when he’s about to be consumed by the enormous beastie. He just turns to the beastie sword in hand with his Captain Jack wry grin and says “Oh, hello beastie” and takes her on! I LOVE this scene. He’s facing destruction to be sure and he just goes for the fight and he intends to fight hard at it. Anyway, I look forward to having you all rescue me from the “ends of the earth and beyond” to fetch me back!

So it turns out, I’m a SpiroChick after all. When my sis told me “You know you are a SpiroChick, why don’t you write with us.” I really couldn’t, wouldn’t. I was still in my denial and "I can’t go through this" phase of my Lyme journey. Let’s just call this diatribe my SpiroChick coming out party. I’m ready to take on the beastie. I have no idea what that looks like, where this journey will take me, how much more pain and suffering I will go through, but I’m facing it head on. “Savvy?”

Susanne, Kim's sister, is our latest SpiroChick. She also blogs at Adventures of a Soap Artist.

Thursday, May 13, 2010


Susanne's story Part II

Can I blame Borrelia burgdorferi for all my years of sickness? I don’t think so. But it is a piece of a complicated web of mysterious illness that over the years has come to include Hoshimotos thyroiditis, chronic Epstein Barr virus (and other chronic viruses), chemical sensitivities, numerous food allergies (list still growing), chronic inflammation, joint pain, gluten sensitivity, ear pain, chronically swollen glands, inability to concentrate, short term memory issues, and more.

So when things went completely haywire last year with the symptom proliferation being crazy and beyond the scope of local practitioners I sought the help of someone outside the area. When the diagnosis came back “you have Lyme disease” it was not a huge surprise. One might think that having a diagnosis would be a relief of sorts, but it is really just another beginning to another complicated and terrifying journey into the unknown.

There is still so much that is not known about Lyme. To say that Lyme disease is surrounded by controversy is somewhat of an understatement.

In my very laypersons understanding, Borrelia burgdorferi is this incredibly adaptable organism that hides from your immune system and attacks where it is weakest to wreak havoc on you all the while thriving in your system. The organism’s adaptability and ability to survive creates a huge variety of symptoms in individuals creating a complicated web of treatment needs and options. The practitioners who are willing and able to treat the disease are the ones who listen to their patients and believe that this crazy symptom proliferation exists and are willing to work tirelessly and creatively at managing the disease all the while facing a sea of scrutiny about whether it really is Lyme disease, whether the treatments work, which tests are reliable for diagnostic purposes, and the list of controversy goes on … and on.

So having been diagnosed with Lyme, where am I exactly? Almost right where I was before with a whole new sea of information to weigh and ponder.

Most days I resort to pretending that the harsh reality of Lyme disease does not exist at all. But then I’ll have this series of days where life is spiraling downhill fast in a sea of fatigue, pain, and inability to think straight and I have to look it (Lyme) in the eyes and acknowledge it’s existence in my life, a force to be reckoned with. At night when I lay awake because I can’t fall asleep because of the pounding in my head that sometimes sounds like horses galloping across my brain and sometimes just a buzzing thumping sound I realize I can’t escape the knowledge of it.

I’ve pondered this sensation with a few docs, my blood pressure is golden, experimented with some other culprits and come up with zilch. So the weird pounding, buzzing, galloping thing, it sounds crazy but I wonder if it’s those little spirochetes putting the screws to my brain, drilling their way through my tissues looking for something new to plunder. Who knows? But it’s just another mystery among the sea of them. And I won’t fall anymore for the idea that I must be mentally ill.

But after the days of denial pass, and the awareness of reality breaks through, and I square with the idea that I have Lyme and a perilous road ahead, the question is how do I walk on?

Coming next: Part III,Walking On

Susanne, Kim's sister, is our latest SpiroChick. She also blogs at Adventures of a Soap Artist.

Wednesday, May 12, 2010

When Borrelia burgdorferi knocks on the door of your immune system

Susanne's Story Part I

Although I don’t know exactly when Borrelia burgdorferi knocked on the door of my immune system I suspect it was around the time that I became violently ill with giardia after spending some time in the backcountry of Idaho with my parents and little sis.

For most people backcountry sounds like a quaint little cabin in the woods with a road leading up to it. Well that’s not exactly what it was. We spent about ten days on horseback exploring the mountains behind our already remotely located ranch along the banks of the wild and scenic Salmon River dubbed “The River of No Return." We saw no one for the entire duration of the journey.

At the time, I was a teenager. This particular adventure stands out in my memory as a moment of peaceful quiet serenity juxtaposed against the backdrop of the tumultuous difficulties of high school life and pretentious relationships. The adventure into the backcountry is a precious memory of time standing still and immense beauty beckoning my soul. Then along came giardia, weeks of throwing up and diarrhea followed by allergies, fatigue, weakness, depression, catching every bug that came by, and so on.

I finished high school and managed to be accepted to my top choice college. College came and went and remains a bright spot in my memory of carefree days of studying at the beach (yes I actually trained myself to block out the distractions so I could maximize my time at the beach and still get the grades I wanted) and authentic friendships with fellow sojourners. But the bright days were mixed with long episodes in bed recovering from the bug that took everyone else a few days to recover from and typically dizziness and vertigo, all unexplained and mysterious.

Post college I met the love of my life, we married and not according to plan immediately starting having babies. Two incredible little blessings came within two years of each other. A car accident while 7 months pregnant with the second left me unable to lift my daughter from her crib when she was born, my son, then two had an incredible responsibility of being the delivery boy, picking up what I could not (not the baby of course, somehow I must have managed it with excruciating pain and weakness).

I’ve spent the past 15 years with varying degrees of intense and chronic low back pain with little explanation as to why, no diagnosis really. A gazillion doctors, a gazillion physical therapists, several chiropractors, cortisone injections, etc. etc. etc. Then all the vestiges of youth left my feeble body when a third pregnancy, seven years after the last did me in.

After 7 months of excruciating pain, inability to stand or sit, an incredible gift was born. My youngest turned out to be sort of a mini-me even though a boy. I have learned more about myself with this little mirror walking around my house. He is showing me how to reclaim a child like joy for the simple and small things in life, to revel in the surprisingly good. Yes he has his incredible lows for the small disappointments in life, and watching him has taught me to own and laugh at my own response to life not going according to my plan.

Coming soon: Part II, Diagnosis.

Susanne, Kim's sister, is our latest SpiroChick. She also blogs at Adventures of a Soap Artist.

Sunday, May 9, 2010

Happy Mother's Day!

It is Mother's Day and I woke to wonderful gifts from my daughters, an illustrated book and a beautiful mobile of ribbon, Shrink Art, beads and fabric flower petals. The gift of creativity is very much intact. My best gift is the progress we've made in our fights against Lyme.

Lyme disease is tough. The fatigue, joint pain, headaches, cognitive and neurological challenges wear you down. For a mother with Lyme, the challenge can be especially emotional if you're not able to do all you would like. From reading to playing, cleaning to cooking dinner, all have taken a hit at one time or another; most daily. And for those of us who have passed this disease unknowingly to our children in utero, it can be especially heart wrenching as we watch our children face the challenges of this disease on their own. From their tenuous beginnings as preemies, to their own daily physical, cognitive and emotional challenges, it breaks our hearts. I know. Both of our daughters have been fighting this disease since before they were born. It is all they've ever known.

A doctor once said, "We would never wish something like this on a child, but kids that endure grow to be pretty special adults."

We have seen this in our daughters' perseverance, compassion and zest for life. Just last week, our youngest strapped on her roller blades and helmet, grabbed a bag of dog treats and our Border Collie's harness, tossed a treat down the hall and held on for the ride of her life! As we rescued the dog, we applauded her tenacity, her love of life.

And so today, we celebrate all of the amazing women who have touched our lives and the lives of our children. Our inspirations each and every day! Wishing you much love and joy this Mother's Day!

Monday, May 3, 2010

Spreading Awareness

I feel like I've been M.I.A. from SpiroChicks lately. If you ask my husband he would probably tell you I've been M.I.A. from everything in life except Lyme disease awareness.

I have been working on the Paint May Lyme Green campaign obsessively for the past two months. It's been a CRAZY ride and I never expected it to lead to where it has.

I am in Los Angeles for the second time in a month, unheard of for me. I feel like I live on my brother's couch, luckily it is a comfy one!!!

Anyway, I can believe how successful the PSA campaign has become. On Thursday April 29th I found myself in a 4,000 sq foot studio with a full production crew and seven celebrities all there to help spread awareness by making Lyme disease public service announcements for the web and television! AMAZING!!!

We filmed 18 PSAs! We aren't done yet either! We won't have the studio or the full crew, but we are going to film a few more PSAs and interviews with more stars later this week.

I am so thankful to everyone who has donated to this project. We are making big strides for awareness this May.

Check out all the PSAs we have posted so far on
Lymenaide's YouTube Channel.

Please share & re-post the PSAs to spread awareness. Also check out Lymenaide to read more about what we've been up to and to meet the celebrities who are lending their voices to help spread Lyme disease awareness.

DONATE to the project. The PSA project is only possible because of donations. This is a grassroots effort for the Lyme community, by the Lyme community. Together we are making a difference!