Archive for August, 2012


Leapin’ Lizards!

Western Fence Lizard

Western Fence Lizard (Photo credit: Wikipedia)

“Leapin’ Lizards” and “It’s a Hard Knock Life”, Borrelia. That’s what little orphan annie said.

Leapin Lizards, on August 8th I shared a link on my face book page about how UC Berkeley scientists had revealed that ticks that feed on the blood of the western fence lizard in California showed no signs afterwards of infection from you, Borrelia!! AMAZING. A-MAZING. Something in the blood of the western fence lizard, when sucked in by the the little tickie-poos, was able to kill you off and render the tick devoid of you!! Meaning the tick was no longer an infection risk to humans. What?!? Who is at the root of this great work? And what does this mean in the fight against lyme disease? Debi Seibert and Lynne Grayson (lyme whisperer followers on facebook), hope you enjoy this update!

Western Fence Lizard (Sceloporus occidentalis)

Western Fence Lizard (Sceloporus occidentalis) (Photo credit: Larry Meade)

Well, for starters, Dr. Robert Lane of UC Berkely has a series of published work on this effect of the western fence lizard dating back to 1989. In Dr. Lane’s 1989 study, your spirochetes, Borrelia,  were not found in the blood of 261 wild-caught lizards, including  lizards fed upon by infected ticks at the time of collection. In the 1990 study, Dr. Lane attempted to infect the western fence lizard with you, Borrelia, and was unsuccesfful. In the 1992 study, 0 of 223 tick larvae and 2 of 330 nymphs (0.6%) that had fed on the western fence lizard contained your little spirochete presence,  Borrelia. And, spirochetes were NOT found in the blood of lizards examined. These results are only a partial summary, but they are impressive!!

What does all this point to Borrelia?? That there is a Borreliacidal factor in the blood of the western fence lizard! Borrerliacidal…don’t you loooove that term?! I DO. As concluded in a 1998 study by Dr. Lane, “We conclude that the blood of S. occidentalis contains a thermolabile, borreliacidal factor, probably a protein, that destroys spirochetes in the midgut diverticula of feeding I. pacificus (tick)  nymphs.”

A 2000 study shed some light on exactly that that protein in the western fence lizard blood may be by stating, “Proteins comprising the alternative complement pathway are responsible for the borreliacidal activity observed in the blood of S. occidentalis.” Any other biology majors out there? The Complement System is a part of the innate immune system that helps or “complements” the ability of antibodies and other immune cells to attack and clear harmful oganisms from the body. It  consists of a number of small proteins found in the blood, generally synthesized by the liver. These proteins typically circulate in inactive form until triggered.

Ironically–and Lynne Grayson you won’t like this–there is an eastern fence lizard but they do not show the same ability to rid ticks of Borrelia, according to a 2007 study, and therefore will not reduce the risk of lyme disease in certain geographical regions. 😦

Dr. Lane’s most recent works were published in 2011 and 2012. And after reading them, I had to wonder, as did my curious facebook followers after I posted my intial post on August 8th, were studies being conducted to isolate the protein from the western fence lizard and was anything being done to develop it commrecially? So that we would have a potential therapeutic agent against you someday Borrelia??! Well, why not ask the gentlemen behind it all? So, I emailed Dr. Lane at UC Berkeley! Oooh I felt almost as excited as Ralphie from A Christmas Story waiting for his orphan annie secret decoder ring in the mail. What would Dr. Lane say??

Unfortunately, this is where “It’s a Hard knock Life” comes in…Dr. Lane kindly responded by saying “Thank you for your interest in our lizard research.  Regrettably, we have nothing else new to report with respect to it since publication of our 2006 article demonstrating the refractoriness of the western fence lizard to Borrelia bissettii spirochetes. Again, thank you for contacting me, and keep up the good work.”

Well, Borrelia, seems like us lymies won’t have a lizard blood potion any time soon. Another knock for us. No vaccine. No magic pill. So disappointing that the western lizard may hold the key but nothing is being done–at least at the moment–to capitalize on this scientific discovery. As always, we can only hope for the time being. Leapin’ Lizards.

Debi, Lynne, and everyone else, I hope you are pleased with this update. And I am thankful for Dr. Lane for responding to my inquiry! And for all his research. Who knows, maybe something will be developed in the future based on all the important work he has done….

English: Mark Hyman Head Shot

English: Mark Hyman Head Shot (Photo credit: Wikipedia)

The Blood Sugar Solution, Borrelia. It’s the most recent New York Times best seller by Mark Hyman, MD. And the basis behind bloodsugarsolution.com. I have known Dr. Hyman on a business level for a number of years, and had the privelege of attending his book launch party in New York City earlier this year. Dr. Hyman’s latest book attacks the issue of “diabesity” in this country–blood sugar and insulin dysfunction that leads not only to diabetes, but to heart disease, cancer, dementia and more.  The book provides an authoritative guide on the root causes of diabesity as well as the seven steps to regaining health by reversing or preventing it. How, Borrelia, how does this pertain to you??…

…Well, for starters, I would like for us for a moment to think of it as The Borrelia Sugar Solution, rather than The Blood Sugar Solution. Why? Borrelia, you thrive on sugar. Thrive. I strongly feel that  anyone affected by lyme disease needs to take their sugar intake VERY seriously. The last thing anyone should want to do, Borrelia is give you the edge. Sugar in all its forms–evaporated cane juice, agave syrup, high fructose corn syrup–does that. As The Borrelia Sugar Solution, The Blood Sugar Solution helps us realize that food in its whole and simplest forms prevents us from overloading our bodies with added or hidden sugars. Your little elixir of life, Borrelia.

Second, we all need to understand that because lyme is a chronic infection, our adrenals are over worked. They crank out cortisol–a stress response hormone–because we are fighting this infection. Increased cortisol prevents insulin from working properly. As a result, our blood sugar increases and insulin resistance can develop. With lyme disease, we become predisposed to blood sugar problems.  Before becoming diagnosed with lyme, Borrelia, the naturopath indicated that my blood sugar levels were elevated. Which didn’t really make sense given that I had just lost 20lbs (from being so sick). Why, then, were my fasting blood sugar levels elevated? Once diagnosed with lyme, the naturopath thought back to this piece of the puzzle and realized that the physical stress of the infection and my elevated cortisol levels were affecting my blood sugar. We lymies can manage our sugar intake and optimize our health and strength by adopting the nutrient dense, simple, sensible food plans offered in the book. Which is why for our purposes I like to think of it as The Borrelia Sugar Solution.

What follows are the 7 Steps for regaining health as outlined by Dr. Hyman but embellished by myself with the lymie in mind.  I’ll keep it short and simple as I can. Us lymies have a hard time processing lengthy pieces of information, as you know, Borrelia. What follows, if you ask me, is the recipe for creating a lean mean lyme fighting machine. An Optimus Prime on the inside.

Step 1: Boost Your Nutrition. Simply, wholesome, simple, real food. Not packaged, prepared, artificial, processed. Lean meats and fish. Grains like brown rice and quinoa. Omega fatty acid rich oils like fish, flaxseed, olive, and coconut oils. Antioxidant and polyphenol rich fruits. Fiber rich vegtables. Elimination of dairy and gluten if possible. What I love about having read the book is that by following those criteria I fell in love with great food again rather than eating to get by on a busy schedule. Avocados, herbs, garden tomatoes, rosemary infused olive oil (drizzled on everything), coconut yogurts, fish, cashews, lemons and limes for flavor, nut butters, etc. Simple, satisfying eating. Maybe I wasn’t able to follow Dr. Hymans recommendation to the fullest and strictest sense. But boy, was it a wake up call. And I consider my diet to have been healthy even before. But you know what? I can always improve even more.

Step 2: Regulate Your Hormones. This is true for lymies. Cortisol is a hormone most likely elevated for most of us because of the stress of our infection. However, a diet high in sugar also increases cortisol. And at least for women, Borrelia, you can really mess with the progesterone and estrogen, like we need any help with that. I know my naturopath had me take some hormone balancing herbs when you were manifesting as messed up menstrual cycles. Did you like the taste of those, Borrelia? I didn’t. Let’s not forget melatonin, the sleep hormone. Many of us suffer from insomnia. Melatonin supplements can be a great way to get through this.

Step 3: Reduce Your Inflammation. Yeah. This is a biggie, Borrelia. Lyme Disease EQUALS inflammation. Inflammation from the infection exacerbates and perpetuates our symptoms, in addition to the fact that inflammation contributes to insulin resistance and diabetes. Sugar also contributes to inflammation. So again, Borrelia, us lymies really need to get sugar out of our diets as much as possible. We are inflamed enough! Best to avoid inflammatory proteins–like those found in dairy and gluten–and consume antiinflammatory oils and plant based foods as mentioned in Step 1. Also, because of all the antibiotics we take, us lymies really need to minimize gut inflammation. My best advice for that is probiotics, healthy bacteria available as a supplement. They remove bad bacteria (bad bugs) in the gut and boost immune function. The one I took while taking antibiotics was VSL-3.  Mind having a roommate in there Borrelia? You shouldn’t get along just fine. 🙂 Which brings us to Step 4.

Step 4: Improve Your Digestion. Remove bad bugs, acid blocking drugs like Prevacid and Nexium if you can, and food allergens. These interfere with or damage digestive tract function. Replace with probiotics, enzyme supplements and fiber. Repair the gut with omega-3 fatty acids (oils or supplements), zinc, glutamine, and more. Your naturopath or LLMD can help.

Step 5: Maximize Detoxification. In this section of the book, Borrelia, Dr. Hyman discusses how environmental toxins can make us fat. By interfering with insulin and blood sugar. Which leads to weight gain. For me, the take home point for lymies is just like your diet, keep things clean–your environment in this case, when you can control it. So as not to overburden your already overburdened immune system. And you want that liver–our detox organ–to be healthy and not burdened by processing chemicals and toxins. Choosing natural insect and yard repellants; natural home cleaning agents; natural skin and body products; hormone-free, antibiotic free meats; clean produce; minimal exposure to acetaminophen or ibuprofen if it can be helped; moderate alcohol and caffeine consumption; avoid MSG, etc.

Step 6: Enhance Energy Metabolism. Enerwhat? Does anyone know what energy is anymore? Borrelia, you must be flying off your little treadmills in there because any energy we had belongs to you now. I picture you, with a Richard Simmons headband and shorts, Borrelia. With all the annoying energy in the world. Well, we can try to reclaim ours. Each of our cells have many little energy producing factories in them called mitochondria. Mitochondria are the most concentrated in muscle, the heart, and brain. When we face a chronic illness like lyme or diabetes, our mitochondria don’t function as well and we feel fatigue, exhaustion, memory and cognitive issues, fatigue (did I say that already?). How to keep the mitochondria churning and energized?  Eating right (see Step 1), enhanced protein intake, exercise, and supplement options like coenzyme Q10 and B vitamins.

Step 7:  Soothe Your Mind.  Dr. Hyman speaks of reducing stress because stress increases your blood sugar levels and therefore your likelihood of gaining weight and/or developing diabetes. And mentions techniques for stress reduction including meditation, yoga, healthy relationships and friendships, dancing, laughing, etc. I agree that these are key ways to soothe your mind and soul. I developed this blog, Borrelia, to soothe myself and others like me by providing  a community–a forum for information, stories, even laughs if possible! I also have in mind to organize a local group of us to socialize and bond, another way to soothe our minds and make us feel connected and understood. I also think in the case of lyme disease, accepting the diagnosis–and most importantly the journey–brings a certain peace and healing that can soothe anger, resentment and frustration. And of course, Borrelia, it is soothing to me to speak to you in my sarcastic, chiding way. As it makes me feel more in control. It’s my body, my life. I’m talking and dictating to you. Not the other way around.

So to all my Lean Mean Lyme Fighting Machines out there, maybe talk of The Blood Sugar Solution, The Borrelia Sugar Solution, and 7 Key Steps to regaining health has been helpful. For lymies, the idea behind the book in the context of our illness is not about diabetes, losing weight, etc. But rather to get ourselves in fighting form. I believe these 7 Steps puts us on the right path. I didn’t read the entire book from front to back. It’s a long one and I have issues with fatigue and concentration right now. But I pulled what was important for me. And hopefully, for you. Here’s to our inner Optimus Prime. Let’s transform ourselves (and in the process defeat that Megatron Borrelia!)

Optimus Prime

Optimus Prime (Photo credit: Wikipedia)

P.U.S.S. n’ Hoots

Puss in Boots (Shrek)

Puss in Boots (Shrek) (Photo credit: Wikipedia)

Borrelia, this post was inspired by guest columnist Toni Bernhard of Psychology Today, specifically by part two of her article “What Those with Chronic Pain or Illness DON’T Want to Hear You Say“.  As Toni prefaced in part one,  the purpose of her piece was not to make fun of those whose comments are off the mark (because most people have good intentions), but rather to make those with health difficulties feel less alone and to help friends, family or others understand how some of their comments may be perceived. The article shares examples of comments that a friend, family member, coworker or fellow worshiper made to a person with chronic disease, followed by the thoughts and feelings of that person with chronic disease in response.

I laughed and nodded at the examples she gave, and could very much relate. So it inspired me to come up with my own sets of examples, but with my own spin. Interactions between what I will call a P.U.S.S. (Poor Un-Suspecting Soul) and the lymewhisperer (LW), just for hoots. Because the P.U.S.S. in the examples below is simply making ordinary life observations–not making comments related to chronic diseae–and would have had no reason to expect the sarcasm of the lymewhisperer. And because the sarcastic humor of the lyme whisperer isn’t reserved just for you, Borrelia!

P.U.S.S: My foot fell asleep for three minutes!

LW: My foot fell asleep for three years.

P.U.S.S: Wow! That ride made me dizzy!

LW: Being awake makes ME dizzy.

P.U.S.S: I have a photographic memory!

LW: Memory…memory….I forgot what that means??

P.U.S.S: Wow, I can’t believe how much these turnpike tolls cost.

LW: Wow, I can believe how much the toll of lyme disease costs…let’ see, doctors visits, antibiotic, probiotics, dark circle eye cream…

P.U.S.S: I’m so tired.

LW: I’m so tired of being tired of being tired.

P.U.S.S: I need a sugar fix.

LW: I need a body fix.

P.U.S.S: Top of the mornin’ to ya!

LW: Actually, mornings are rock bottom.

P.U.S.S: Man, I really hate being in the lime light!

LW: Man, (long pause)…. I really hate being in the lyme light…

 

So there you have it, Borrelia! A creative little exchange with me and a P.U.S.S….just for hoots!!

The Levine Legacy

Borrelia, you and I hadn’t even met yet when I met Margie Levine for the first time in early 2001. She was running a local chapter of The Institute of Noetic Sciences, a  nonprofit research, education, and membership organization founded by astronaut Edgar Mitchell.  “Noetic” comes from the Greek word nous, meaning “intuitive mind” or “inner knowing.” Their mission is to support individuals and groups in awareness of consciousness, spirituality and science to help in the realization of our innate human potential.

Edgar Mitchell, co-founder of the institute

Edgar Mitchell, co-founder of the institute (Photo credit: Wikipedia)

I used to love these meetings. So many stories, mostly from women who had been through serious life and health challenges, coming together to learn and harness the skills of tapping into their inner selves for healing. Part of this healing, as led by Margie, was visualization. Margie was no stranger to health challenges. She wrote the book Surviving Cancer, and was the longest survivor in the world of mesothelioma. Doctors gave her 6 months to live. She lived 12 years beyond her diagnosis, Borrelia. In addition to convincing Brigham & Women’s Hospital to adopt a new chemotherapy treatment protocol she had discovered while at Sloan Kettering Cancer Center in New York, Margie lived a life of healthy eating, exercise, appreciation for nature, healthy relationships, meditation and maybe most powerful–visualization. Through which she seemed to initimidate her cancer cells by visualizing the cancer cells in her body being destroyed or the healthy cells in her body taking over. I remember she told me sometimes she visualized her immune cells with jack hammers pounding away at the diseased cells in her lungs. Visualization was a powerful tool in Margie’s fight, as described in this clip from Chronicle:

September 11, 2001 was the last day I saw margie. It was a most beautiful day, and we were having a chapter meeting at Margie’s house.  That day, the September 11 terrorist attack,  turned into one of the darkest days any of us have ever experienced. After that day, for whatever reason, I never attended another gathering with the Noetic group. I never saw Margie again and learned of her death on the news.

But I’ve been thinking alot about Margie lately, Borrelia. Maybe subconsciously I tapped into what Margie and the Noetic experience taught me. Maybe the reason I came up with lyme whisperer was that my “intuitive mind” or “inner knowing” told me I needed to have this inner dialogue with you to harness the healing power within myself. Or as Margie taught me, to visualize my body defending itself from the inside. Or to visualize breathing in healing light, exhaling black smoke of sickness. Visualization is a creative process, I can visualize anything I want Borrelia, as long as it empowers and relaxes me. And in doing so, I can overpower and intimidate you. And I do visualize (and verbalize!) intimidating you and defeating you, Borrelia…Every day that I blog, I visualize a conversation with you. These conversations free my  mind and body–of the anger, fear, anxiety, frustration– so that the healing can begin. Without those negative energies, my immune cells are empowered to seek and destroy you, Borrelia, I know they are. I visualize those empowered immune cells as heat guided missles. And guess what…you are the heat source, the smoldering little fires all over my body that they seek to extinguish.

I wanted to tell you about this very special friend of mine, Borrelia. And to let you know that when I felt like a train track was vibrating under my feet today because of the way my legs and muscles were vibrating and twitching, I pictured taking a sledgehammer to the tracks and derailing the train. Then I pictured your evil little face under the conductor hat flying over the cliff as a result. It was a satisfying visual and empowering.

Thank you, Margie. God bless your sweet soul and everything you taught me. Life has a way of bringing together people and experiences for a reason and now I know why I was meant to cross your path. Your spirit lives on, and I can visualize your smiling face.

Cover of "Surviving Cancer"

Cover of Surviving Cancer, by Margie Levine

Mums The Word

United States (Alaska incl.) - Satellite image...

United States (Alaska incl.) – Satellite image – PlanetObserver (Photo credit: PlanetObserver)

Yes, having a mum and being a mum means you can be in the crossfires of worry and anxiety for each of them. Like I am right now, Borrelia…Maybe it’s all just coincidence. But maybe it’s not. What my mum and my son are going through right now. Each of them with symptoms that immediately make me speculate (and panic) that lyme disease is pulling their strings like an evil puppeteer, too. Maybe I’m unnecessarily projecting my experience to what they are each separately experiencing.  Or maybe I am so in tune with lyme I can smell it a mile away, with the fierceness of a shark detecting a droplet of blood in the water.

The article I am reading by Katina I. Makris, CCH, CIH, makes me believe I am that shark, Borrelia. That maybe my hunches and senses are right. According to her article in the New England edition of Wisdom; of the heavens, earth, body, mind & soul,  The CDC believes that there are over 300,000 new cases of lyme disease each year, and that only 10% of them are diagnosed. That leaves 270,000 undiagnosed cases. Partly to blame, doctors who are too relaxed or uninformed or quite frankly just stubborn and ignorant. Also, lab tests that have an error rate of 60%. Climate change could be a major contributor to the prevalance of this disease. Even in the northeast, winters have become unseasonably warm, allowing ticks to “winter over” instead of die from frigid temps. As Ms. Katina points out, lyme disease is a ravaging and misunderstood epidemic that has exploded past HIV in terms of growth rate, making it  the number one infectious disease in the U.S.…why shouldn’t I be worried right now, about my mum and son…

MY MUM:  For the last 5-7 years, my mum has struggled with immune and joint related issues. She seems to be a complex case and northern Maine rural medicine is not well suited to provide her with any real answers. Her diagnosis over the last few years has essentially been a lot of “I don’t knows” followed by a lot of prescriptions to treat what they don’t know they are treating. Which inevitably, only makes things worse. Now she still doesn’t have a root cause of her pain and discomfort, and the meds have side effects of their own. They have described her at times as having borderline lupus and borderline rheumatoid arthritis. Possibly chronic fatigue. All things that you, Borrelia, mimic. They have tested her for connective tissue disease. She has described burning and electrical sensations. And tightness in her upper body, lung and heart area. And pain. Everywhere. Because they have tested her for everything and essential found nothing, they have told her “it’s most likely arthritis.” I bet you are enjoying this little story, Borrelia. Could my mum, who has gardened in my yard for the 11 yrs I’ve lived in new hampshire, have lyme disease? Could she have gotten it while gardening on a visit? Did you prey on her while she was giving the raspberry bush some TLC, Borrelia?? Am I over sensitive to lyme disease and think that anyone with bizarre symptoms must have lyme disease? Am I projecting my own experience to hers? Or am I finally the only one hearing what she’s saying? We’ve even taken pause at some of the similarities of our symptoms. The electrical jolts. The tight band in the upper abdomen. Burning feet. You know what I’m talking about, B.  I hate to add to her medical woes and appointments, but I recently told my mum while on vacation, that we need to find her a naturopath or lyme literate doctor. And that is at the top of my priority list, to help her do this.

MY SON: I could just excuse it as having lyme on the brain. My own case. Worried about my mum’s potential case as described above. However, my son did get bitten by a tick in April. The tick was engorged and sent in for testing, but as luck would have it, either the doctors office lost it and never sent it in or the testing lab lost it after they received it. So, the tick was lost, Borrelia,  and never tested and of course that would have been valuable information. I opted not to have my son tested at the time. He was treated 3 weeks with oral antibiotics. But of course it has weighed in my heart and mind since then. And of course I have been on guard about any potential odd symptoms. So yesterday, when he presented with a fever and chills and complained about arm and leg aches and back and hip pain, I can’t help but be anxious about you, you  little bacterial twit.  In the article by Ms. Katina, she mentions the life cycle of you, Borrelia, as being every 6 weeks. With what she described as having a hide and seek like effect on symptoms. Every few weeks symptoms can arise. What if this is arising now, as a result of the earlier tick bite? Are you rearing your terrible little frankenhead right now with my son, Borrelia?? Come out come out wherever you are, this mama is ready to seek. Seek and destroy, that is. I will be making him an appt. I will be having him tested. And god forbid, but if it’s you borrelia and not just a passing virus, this will be the worst game of hide and seek in your life. Course, it could take months to get him to see the doctor. The lyme literate doctors often don’t have appts. available within the next  4-6 months, they are so overwhelemed with patients. That’s a lot of time to let pass by without answers. And sickness in between. I will advocate my best to get him seen at the earliest date possible, Borrelia. Though us lymies are used to waiting and agonizing for answers. I will keep him strong and healthy in the meantime, it’s the best defense. My tendency is to drop everything and focus and fixate on this worry and this alone. Let my housework go. Lose focus at work. Skip exercising for weeks. Until I get answers. However, Borrelia, if you have taught me anything about how to live my life with you  it’s this. One step at a time. One day at a time. And move forward. Don’t stop. Move forward.

Frankenstein

Frankenstein (Photo credit: twm1340)

So, yes, Borrelia, I will go to sleep tonite worrying about my mum, and as a mum myself, worrying about my son. Hence my naming of this post, Mums the Word. However, remember one thing, Borrelia. Make no mistake.  I will never be mum or silent about you. I will talk, rant, educate, blog, whatever I need to do to inform others and their families as best I can.