Thursday, December 9, 2010

Pamela Weintraub calls the Chicago Tribune article a "sensationalistic hatchet job"

by Kim Kooyers, SpiroChicks co-founder

I don't even know where to begin with yesterday's Chicago Tribune EDITORIAL. My head is spinning. But while I gain my composure, and work on my own story as Ashley has called us to do (in a nutshell: I would not be able to function or care for my two young children if it weren't for long-term antibiotics). I thought I'd share Pamela Weintraub's response to the article:

Whenever a diagnosis enters the wild west of contested disease, charlatans may prey on the sick--many of whom do not have the disease at all. But to profile this disordered fringe as representative of those on one side of a medical debate while presenting university scientists as representative of the other is biased reporting. In its failure to research the essence of the debate over Lyme disease symptoms that persist after short-term antibiotic treatment, and especially in its failure to interview scientists from mainstream academia to present an alternate viewpoint, this article represents a low in science reporting. This agenda-driven piece rides roughshod over complexities and nuances–and the core ethics of journalism--by implying it has relied on predators for information because legitimate scientists with alternate viewpoints do not exist. I assure you, they do, and would have to be quoted to make this real journalism instead of a sensationalistic hatchet job.

--Pamela Weintraub, Features Editor, Discover Magazine and Author, Cure Unknown: Inside the Lyme Epidemic (Winner of the American Medical Writers Association Book Award, 2009.)

BTW, be sure to check out Lorraine Johnson's response to the article on the CALDA site.

Wednesday, December 8, 2010

Chicago Tribune Article and Response

By Ashley Van Tol, SpiroChicks Writer

Today I was quoted in the Chicago Tribune Story Chronic Lyme disease: A dubious diagnosis. The quote came from a post I posted here on SpiroChicks and on Lymenaide in April after the IDSA made their "decision" about the Lyme disease guidelines.

Here is what was quoted from the post IDSA vs. Lymies-
...Egging the IDSA building or somehow infecting the committee members with Lyme sounds great because we are pissed off. However, these are not realistic or appropriate actions.

We need to fight back by telling our story louder than theirs....
In the wake of this latest attack on the validity of our illness, that last line "We need to fight back by telling our story louder than theirs" is once again our best course of action.

Today's Tribune articles drags Lyme doctor's and patients through the mud. Here is an excerpt from the article. Read the entire article here- http://bit.ly/fE9H2k

...Lyme disease is real. The bacterial infection, chiefly transmitted by deer ticks, can cause rashes, swollen joints and inflamed nerves, and usually is curable with a round of antibiotics.

But doctors around the country are telling patients with common medical problems such as back pain, poor concentration and fatigue that their ailments stem from a chronic form of Lyme disease that can evade standard treatment and wreak havoc for years. To fight what they believe is a persistent infection, the doctors often order months or years of intravenous antibiotics, which can cost tens of thousands of dollars.

Strong evidence isn't on their side. But in a golden age of dubious medicine, that doesn't matter.

These days, advocates can raise big money to "Unmask A Cure" for a disease that already has a cure, and doctors disciplined by medical boards are held up as heroes. Legislatures around the country are passing laws to prevent medical boards from disciplining doctors who treat what they consider chronic Lyme with therapies that clinical trials have shown are dangerous and don't work...


It is another kick in the face for Lyme patients and doctors. I said it back in April and I am saying it again today, we can turn this around in our favor. Tell your story. Show them that they don't know what they are talking about. Let's prove to them that they are wrong.

I spent a lot of time on the response I wrote to the article. I wanted to be sure that it was well thought out and clearly illustrated my side of the story. I urge you to do the same. Do not reply with anger and emotion. Plan your response and prove your point with it.

Here is the link to my response to today's article- My Lyme Disease is not the IDSA Lyme Disease.

I sent it to the reporters who wrote the Tribune article. I am working on a response for a letter to the editor. Please note that letters to the editor must be under 400 words, be signed and include contact information, writer's city and state

Here are the email addresses to send your replies to the Chicago Tribune-

Reporters- 
pcallahan@tribune.com
ttsouderos@tribune.com

Letters to the Editor - ctc-tribletter@tribune.com



Monday, November 22, 2010

The Power of Caring


I shared this today at Lyme is Real. Recently, I have found comfort in cranial-sacral massage and acupuncture. As I lie on the table, soft music playing in the background, the experience for me is quite spiritual. I have been sick for so long, I feel as though my body has come to know that as its natural rhythm. During each session, I feel my body is gently wakened to a balanced state. I am reminded of how it should be. I am at peace, my breathing easier and I often sleep deeply after a session. In the few days that follow, I feel a boost in energy. I imagine medications working more effectively. It is not permanent. I schedule two sessions a month.

For those of you who have not experienced acupuncture, the needles are tiny and many pokes are nearly painless. A few are bothersome, but the sensation disappears within minutes as endorphins, the body's natural pain killers, flood the area. Once the needles are in place, I rest. The needles are removed and my session concludes with a cranial-sacral massage; the gentlest massage of the cranial region at the base of the skull and the sacral area of the spine.

Our youngest has experienced three sessions of cranial-sacral massage without acupuncture. Each time, she has fallen into a deep sleep during the session, breathing as easily as I've ever seen her. She feels disoriented when waking, though the time has decreased with each session and it no longer frightens her. Her last session, she ran ahead of me to her appointment, in the door before I. It helps that we place ourselves in the hands of one of the most caring and gentle women I've met when we walk through the door. The visits have been a blessing, but became even more precious when our daughter noticed I was struggling with a headache a few days ago.

"Mom, would you like a caring massage?"

She gently took my head in her hands. My heart melted. Last night her older sister was hurting. Her solution? Another caring massage, remembering each soothing detail as she administered comfort. Her sister went off to bed with a smile on her face. We all did.

This Thanksgiving, our family is grateful for the gift of caring shared by so many who have touched our lives. When it comes to Lyme disease, it often takes courage to care, and to those who have the courage to make a difference in the lives of others, we are especially grateful! Wishing you and your family a blessed holiday!

Saturday, November 20, 2010

So grateful for my Lyme friends

by Kim Kooyers, SpiroChicks co-founder. Cross posted to gratitude365.

Last Friday night, I had the most amazing pre-Thanksgiving group-dinner (I can't stand the word potluck) with a few SpiroChicks and friends, to whom I am incredibly grateful just because of who they are: people like me--struggling with Lyme--that you don't have to explain anything to (especially your diet) and genuinly want to hear about the latest health gizmo.

We had a special guest, a practitioner in the Lyme community, join us. Over dinner, I was saying something about how when we're better, we'll be "Wholechicks" (Alix deserves the credit for coining that one). Our guest told us that we already were so powerful. We didn't have to wait until we were well to be "WholeChicks."

A flood of emotion came over me and I cried. I wish I could remember the exact words that touched me so deeply, so that I could repeat them to others struggling with chronic illness. Because in that moment, I felt truly "seen." Not as the parent who doesn’t volunteer much; the mom that is too tired to play baseball/soccer/football; the wife with the constant headache; the daughter who doesn't go to church; the sister who “has so many problems”; the flakey friend, the inconsistent blogger, the crazy patient, etc.

This person recognized the heroism just in keeping going in spite of it all (for me that's just getting the kids clothed, fed, and bathed). And saw me and the other amazing women around the table as creative, powerful forces benefiting the Lyme community and even impacting the future of medicine.

THAT will keep me going for a while. Someone thinks I have something to contribute, in spite of my other shortcomings. And that's where my focus needs to be. On what I CAN do. Not what I can't. That's a new lesson in gratitude for me.

I should add that Alix surprised us with "earthing kits" from the Earthing Institute, (you can watch videos about her earthing research here), and Ashley brought an organic, gluten-free, dairy-free, vegan pie compliments of Cafe Gratitude. The night couldn't have been more perfect. And I'm so grateful. For all of it.

Thursday, November 18, 2010

Earthing: Overlooked "Electroceutical," A Give-Away(!), & Effects on Lyme

by Alix, SpiroChicks Co-founder

Last summer, SpiroChicks co-founder Kim Kooyers sent me a link to The Earthing Institute, an organization espousing the idea that we receive a basic and profound health benefit by being in contact with the ground. I thought it made sense. It's true that we've been insulated from the earth's energy since switching to rubber footwear in the 1960s.

If anyone had told me then that a couple months of earthing would diminish my 14-year-long headache, make me think clearer, increase my energy, and restore my sleep after 8 years of relentless insomnia, I would have been hugely skeptical. All these things have actually happened since I began earthing. Aside from going gluten-free in 1999, nothing else has boosted my health so dramatically and rapidly.

However, I'm a data pervert and compulsive researcher, so I know I'm just an anecdote and would never write a blog post based only on my personal experience. My readers know me better than that!

I learned about some of the research supporting earthing's health benefits when I and 999 other attendees at the David Wolfe Longevity Now Conference got earthed in a hotel basement via conductive wrist bands. That was the first day my 14-year headache - a symptom of long-term untreated Lyme Disease - felt a bit better. Probably a placebo effect, I thought. That night, I slept with the earthing band around my foot in the K1 acupuncture spot. I slept better than normal, especially for being in a hotel.

I've since learned that earthing may indeed be the "Most Important Health Discovery Ever" as suggested by the subtitle of Earthing, the ground-breaking book by Clint Ober and Stephen Sinatra MD. From reduced inflammation to pain reduction to better sleep to thyroid regulation to cortisol normalization to blood thinning, and more, earthing IS THAT POWERFUL. And, early studies back that up.

I was so excited with my personal experience and impressed enough with the early research on the health benefits that I made a two-part video to share everything I've learned about earthing so far.

Lyme

Tonight I listened to the Natural News Talk Hour featuring Dr. Sinatra, and asked him why I and my other Lyme friends feel like we are herxing when we begin to earth. I personally had a different herx than I normally have at the beginning of a new herbal antibiotic protocol. Usually, my herx involves insomnia. Though I hadn't recently rotated my protocol, after a few days of earthing I wanted to sleep and sleep, which was an absolutely wonderful and welcome feeling.

In answer to my question about earthing causing a Lyme herx, Sinatra said he'd actually had Lyme and lived near Lyme, CT.  He thought that the frequencies from earthing might cause the entrenched cyst forms, such as those in the joints, to open and go into the bloodstream. (Possibly a Rife-like effect??) The blood thinning aspect of earthing allows treatments to reach deeper tissues. Finally, it's possible that increased blood oxygenation due to earthing has a detrimental effect on spirochetes. I would take all this as pure theory, until there is some research to show what mechanism is involved, but I like working hypotheses.

I hope you enjoy my two-part video series. It's already enjoying lots of action over at Natural News TV!

(Email subscribers, click here to view the videos.)

Part 1 of 2


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Part 2 of 2



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Alix is editor of Med Nauseam Blog, recently voted #1 General Medicine Blog.

Tuesday, November 9, 2010

Community

Ashley, Eric Debra
I have surrounded myself with loving and supportive people. My Lyme friends are my second family. Without there love and support my path back to health would be much harder and so lonely.
I am lucky to have a caring Lyme family here in California and online.

Last week I was in New York City for the Turn the Corner 5th annual Unmask a Cure Gala fundraiser. There was a group of about 20 of us there who knew each other from Facebook. Most of us had never met in person. Meeting everyone for the first time was like Facebook come to life!

Hanging out with this group of people I’d never met before was not awkward at all. It was more like a family reunion than anything else. We ate meals together, explored New York, and stayed up late together all packed into a tiny hotel room.

The Gala itself was fantastic. So many interesting people to meet, great food (some was even gluten free), an auction to raise funds for TTC’s mission, awards and… they played the public service announcements that Lymenaide made for Turn the Corner this past May. It was pretty cool to see that up on the big screen!

It was all over too fast. There were so many people I wanted to spend time with.

I left with stronger bonds and closer friendships. I know that many of the friends I am making now will be friends for life. It is comforting to be a part of a large and caring family. As isolating as Lyme can be, I know that I am never alone.

I hope that next year will be even bigger and better. Actually I hope that I don’t have to wait a whole year to see my friends again!
*****
If you haven’t opened yourself up to becoming a part of the online Lyme community I recommend you do. I can say without a doubt that you will meet wonderful people who will understand you and be there for you if you ever need a shoulder to cry on, or someone to make you laugh. Don’t go it alone, this disease is too hard.

Turn the Corner’s mission
Turn the Corner is dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases.
See more pictures of our time in New York together on the Lymenaide Facebook page- http://on.fb.me/dBoNxc

Monday, October 25, 2010

One Big Step for this Little Lymie

Major landmark in my Lyme disease journey today. I applied for a job. I haven’t worked for a year and a half, I couldn’t. Last spring and summer I could hardly have a conversation. I took at least one 2 hour long nap everyday, often two naps. My doctor forbid me from going to stores like Target and Bed Bath & Beyond because I was so sensitive to light, sound and smells. I couldn’t drive myself anywhere, I could hardly even ride in a car. Just being awake and fed was an accomplishment enough to call a day a good day.

Eleven months later I had improved enough to take on the challenge of Paint May Lyme Green 2010 and producing the Lyme disease awareness PSAs. It was a lot, no, a TON of work but I managed because I was working on the schedule that my body set. Time for sleeping in, naps, pills, special meals, insomnia, days spent in bed, bathroom breaks, Epsom salt baths, infarared saunas, time under the O2 compressor, reverse lattes, doctor’s appointments. Being home and answerable to no one but myself, I managed to be very productive and successful all while wearing my pajamas. The honest picture of the behind the scenes lead up to Paint May Lyme Green would be me in my pajamas behind the computer, usually unshowered, and looking like hell.

Six months and a really rough summer later, I sit here feeling almost healthy. My brain works again. My body is starting to wake up. I’ve gained weight, energy and desire. Until now staying home was all I could do, I didn’t want anything more. More wasn’t even an option. Now I have the desire to do things. I’ve started having dreams about running and skiing, things I use to love but haven’t missed until recently. My body is still weak but my brain is raring to go.

Until two months ago getting me out of bed before 9:00 am was a challenge. I preferred to sleep until 10 or 10:30. My insomnia would keep me up half the night and I couldn’t function until late in the morning. Now I’m waking up at 7:00 ready to get up. The insomnia has lessened and most days I don’t feel the need to take a nap.
I don’t want to stay home anymore, it’s lonely. I want to have some interaction with other people. Before, the thought of any kind of social life was so overwhelming I didn’t even think about it.

I don’t feel like staying home is healthy for me anymore. The huge shell that Lyme disease has housed (trapped) me in for the past two plus years has shrunk so much that I no longer fit. I have to admit that after all this time, I am comfortable here and I’m not sure that I entirely like the idea of getting booted from the small, safe world I have created for myself.

Stepping back out into the “real” world scares the crap out of me. What if I’m not ready, what if I relapse, what if people don’t understand some of the needs that I still have?

If I listen to my body, it tells me I am ready. If I look at my bank account it tells me, you’d better be ready.

Today I interviewed for two part-time jobs at Alpine Meadows Ski Resort. An industry I know like the back of my hand. Comfortable. This is the same Resort that my husband works for. Support and a chauffeur). I told them I can only work 2-3 days a week. I also told them that I have Lyme. Both departments offered me a job. Acceptance. Now it is up to me to decide which job is more suitable to my needs.

Last summer, 115 pounds, SICK, housebound, cognitive malfunction


September 2010, 130 pounds, feeling healthy and functioning well.

Saturday, October 2, 2010

Holy Crap, I'm Getting FAT!

Ashley's "fuller figure"
Seriously people, I’m struggling with this. I have a muffin top!!! It wouldn’t be so bad but the majority of the weight has gone to my tummy. I was honestly scared I might be pregers at first. I am so uncomfortable with my little buddha belly folding on top of itself, it’s squishing me. BLAH!

To top it off most of my clothes don’t fit anymore. Funnily, my skinniest jeans do still fit. They are low rise enough that my new addition can ride comfortably atop the ‘waistband’, which is actually located somewhere below my hips. Trust me you don’t want to peak under my shirt! My previously favorite pair of pants, on the other hand, suddenly went from boyfriend cut hip huggers to mom jeans, complete with being slightly too short.

The Reality- Am I fat? No, I am not fat at all. I don’t actually think that I am fat either so please don’t think that you need to send me any encouraging words. I did quite rapidly put on weight in the last two months, and I’m still adjusting to it.

It is a really good sign that I have packed on enough pounds to reach a healthy weight again. I have spent the majority of the last 10 years underweight. Good for the ego, not so great for my health. My whole family and my doctor can't stop gushing about how much weight I've put on and how great I look. Society and culture don't make accepting these type of comments as complements very easy.

Along with the weight has come extra energy, improved stamina and good report cards from my doctor. I am, happily, miles and pounds ahead of where I was this time last year.

Thursday, September 30, 2010

A Birthday


Thirteen years ago today, I woke to contractions. I was 34.5 weeks pregnant and scheduled for a hospital visit and pre-registration later that morning. We met my ob-gyn at her office beforehand. I still remember her words, "What do you think?"

"I think we're going to have a baby, today."

My son had been born 9 weeks prematurely. Doctors tried to stop the contractions without success. This doctor was hopeful my contractions would stop. She sent us to pre-registration at the hospital, asking them to check me again at the end of the visit.

We were given a quick tour by a very nervous receptionist. My water broke at the end of the visit and we were quickly moved into the room we had just toured. I was going to have another preemie.

There were several complications during the birth, the most dangerous being the umbilical chord was wrapped around our daughter's neck not once, but twice. Each contraction would be bring a slowing heartbeat. Enter high doses of Pitocin and I dilated from 3 cm to 10 cm in 20 minutes, avoiding a C-section by minutes. Our daughter arrived, weighing just 4 pounds 4 ounces, tiny and blue. Yet, like Kate DiCamillo's tiny mouse, Despereaux, she was "born with eyes open." My husband and I will never forget when she turned her tiny head to look directly at him the first time she heard his voice outside of the womb. The bond formed at that moment was a bond that will last a lifetime.

She was unable to maintain her own body temperature and her heart rate was of concern. She was rushed to the neonatal intensive care unit, her home for her first week. Doctors discovered a reflux that affected both breathing and heart rate and she would go home with a monitor that weighed nearly as much as she. It would be her guardian for the first year of her life.

The reason for my premature births remained a mystery. I did not drink or smoke. I ate well and exercised. I was not severely under or overweight. I was told that if we chose to have a third child, it would be a preemie. The doctor was right. Nearly five years later, our youngest entered the world, at almost the same age as her sister, weighing just 2.5 pounds. It would be many more years before we would learn the reason for the premature births. I was fighting a chronic bacterial infection. I had Lyme disease.

It has been well documented in scientific literature that the Lyme bacteria, Borrelia burgdorferi, can cause miscarriages, premature births and still births. Transplacental transmission has also been documented and we are convinced both of our daughters have been fighting this disease since birth. I would love to see Lyme tests for mothers and infants after unexplained premature births, though I wish we had a better test, knowing that the current test would potentially miss many.

On this day, we celebrate our daughter, a beautiful young woman, who brings so much joy to those who know her. We give heartfelt thanks to the fabulous doctor who saved her life at birth and to the fabulous doctor who has given her a new lease on life as she continues to fight Lyme and its co-infections. We are blessed beyond words.

Wednesday, September 22, 2010

Lyme Patient Groups Withdraw from Institute of Medicine Conference

Got this latest Lyme news in my inbox this evening. You can let Congress know you support the Lyme groups' decision by signing this form and the LDA will send your reply directly to Congressman Christopher H. Smith (NJ).

NIH Does Not Comply with Congressional Appropriations Language
Lyme Patient Groups Compelled to Withdraw from Scientific Meeting


In a move designed to protest the Institute of Medicine’s upcoming Lyme disease workshop, three of the nation’s largest and most influential Lyme groups have pulled out of the process. After much deliberation, speaker Diane Blanchard, co-president of the Time for Lyme (TFL- CT) has withdrawn from the panel. The national Lyme Disease Association (LDA- NJ) and the California Lyme Disease Association (CALDA), along with TFL, will not participate in the workshop and their IOM commissioned scientific paper will not be submitted.

The scientific workshop was promoted by the Institute of Medicine (IOM) to be a conference about the state of the science regarding Lyme and tick-borne diseases. Despite the groups request for transparency and a balance of scientific viewpoints, as delineated in Congressional Appropriations language, neither the hearing panel nor the speakers selected by the IOM satisfy the Congressional intent or objectives. The IOM’s mission was to provide “independent, objective and non-partisan” advice to policy makers, yet the majority of the participants sitting on its Lyme disease panel belong to the Infectious Diseases Society of America (IDSA), a medical society with a known bias. Many key speaker roles were given to physicians who are IDSA members and supporters, a number of whom were involved with the IDSA’s controversial guidelines for Lyme. IDSA’s Lyme guideline development process was investigated by the Connecticut Attorney General which resulted in exposing the guideline panel as being riddled with undisclosed conflicts of interest.

In spite of the recommendations to NIH by Congress, the conference opens with perhaps the most polarizing figure in the chronic Lyme debate-- Dr. Gary Wormser of Westchester Medical Center -- who chaired the IDSA Lyme guideline panel and whose highly controversial biased views are well known. There are no scheduled speakers with opposing viewpoints of similar scientific weight to balance his presentation about the research gaps in Lyme disease. Many state-of-the-art scientific researchers and experienced clinicians have been relegated by the IOM and NIH to simply spectator positions.

The patient-oriented Lyme groups believe that this amount of bias undermines the integrity of the scientific workshop and that its final report will reflect this lack of objectivity. “We believe the entire process has the potential to cause additional harm to patients. After much deliberation our only recourse is to withdraw our support for this seriously flawed process. From the inception, TFL, LDA and CALDA have communicated our concerns, which were ignored. We remain hopeful that NIH/IOM will revamp the program to comply with the Congressional language which was responsible for initiating the workshop,” the groups said in a joint statement.

Time for Lyme, www.timeforlyme.org, the national Lyme Disease Association, www.LymeDiseaseAssocation.org, and California Lyme Disease Association, www.lymedisease.org, are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this emerging infection.

For more on this check out the Lyme Policy Wonk.

Monday, September 13, 2010

Top Lyme Doc Says Antibiotics for ANY tick bite

by Kim, SpiroChicks co-founder

Last week, I got this message from a friend on Facebook:

"Hey, we're on vacation and wife insisted that I send u a message. I pulled a deer tick out of my thigh 2 weeks ago. Big itchy spot at site now. no big ring. Kinda achy. How late is too late to be tested and start antibios if needed? So sorry to bother you with this, but wife worries a lot.”

There does seem to be a lot of confusion around what to do if you get a tick bite. And given my experience down the long, rutted, windy, washed out road of chronic Lyme, knowing that if I could change the past I would (i.e. eradicated the buggers before a deep set infection requiring YEARS of antibiotics set in), I wrote back: GO TO URGENT CARE AND GET ON ANTIBIOTICS ASAP. Then find an LLMD when you get home.

So for next time, you or I get a message like this, here's a post you can refer your friends and family to. The best resource out there is Dr. Burrascano's Advanced Topics in Lyme Disease from the International Lyme And Associated Diseases Society site. On page 19, He reccomends antibiotics for 28 days if you just get a tick bite, and six weeks if there's a rash. In the Appendix on page 32, is the rational for treating ANY tick bite:

RATIONALE FOR TREATING TICK BITES
Prophylactic antibiotic treatment upon a known tick bite is recommended for those who fit the following categories:


1. People at higher health risk bitten by an unknown type of tick or tick capable of transmitting Borrelia burgdorferi, e.g., pregnant women, babies and young children, people with serious health problems, and those who are immunodeficient.


2. Persons bitten in an area highly endemic for Lyme Borreliosis by an unidentified tick or tick capable of transmitting B. burgdorferi.


3. Persons bitten by a tick capable of transmitting B. burgdorferi, where the tick is engorged, or the attachment duration of the tick is greater than four hours, and/or the tick was improperly removed. This means when the body of the tick is squeezed upon removal, irritated with toxic chemicals in an effort to get it to back out, or disrupted in such a way that its contents were allowed to contact the bite wound. Such practices increase the risk of disease transmission.


4. A patient, when bitten by a known tick, clearly requests oral prophylaxis and understands the risks. This is a case-by-case decision.


The physician cannot rely on a laboratory test or clinical finding at the time of the bite to definitely rule in or rule out Lyme Disease infection, so must use clinical judgment as to whether to use antibiotic prophylaxis. Testing the tick itself for the presence of the spirochete, even with PCR technology, is helpful but not 100% reliable.


An established infection by B. burgdorferi can have serious, long-standing or permanent, and painful medical consequences, and be expensive to treat. Since the likelihood of harm arising from prophylactically applied anti-spirochetal antibiotics is low, and since treatment is inexpensive and painless, it follows that the risk- benefit ratio favors tick bite prophylaxis.

Sunday, August 22, 2010

The Semantics of Lyme

Yesterday I read an article online that at first pissed me off. I try to keep an open mind so I kept reading. By the end it only half pissed me off. The article is entitled  Another Perspective on Lyme Disease it was written by David Itkin, an infectious diseases doctor in Portsmouth.

In the first paragraph he defends the IDSA and their Lyme guidelines. Generally I would have stopped reading right there, but he also said that the guidelines work for the majority of his patients. I wanted to know about the minority and his opinion there.

Seeing as I know of thousands of chronic Lyme sufferers I’m going to have to say, “Sorry David, we aren’t that rare.” While it is hard for me to get over my bias of anything or anyone who says the IDSA got it right, I don’t think that Dr. Itkin is actually discrediting us or our illness. He isn’t the first person to say calling it Lyme disease isn’t accurate. Even chronic Lyme isn’t really telling the whole story.

How many infections do you have? How many imbalances? How many active viruses and bacteria unrelated to Lyme? Parasites, amoebas??? Lyme is only one piece of the illness we chronic sufferers are dealing with. Perhaps it was the catalyst, or the straw that broke the camels back but it isn’t our only problem, for many of us it isn’t even the most pressing problem.

It seems like Lyme is the common denominator, the thing that we all share, but after that our illnesses are all unique and vary greatly. Some of us suffer physical pain, some have more neurological symptoms. I have digestive problems, others have heart problems. In my personal case when it comes to treatment, actual Lyme disease has never been a major player. For me it has been Bartonella, viruses and bacteria unrelated to Lyme. Oh and I had those worms and amoebas to deal with too.

Dr Itkin says in his article; “I do believe that there is a true medical condition (or conditions) that we are currently unable to characterize…”

I can live with that. What I think he fails to acknowledge is that we call that condition, Chronic Lyme Disease. An accurate description or not, it has been given a name. Arguing semantics isn’t helping me or anyone else. Stop fighting about what it isn’t, we all know that it isn’t just Borrelia Burgdorferi.

There is a whole lot of Dr Itkin’s opinion that I don’t agree with. I give the patients a lot more credit than I feel he does. I don’t think that calling Lyme the carrot to the desperate is fair at all. My doctor’s were very upfront about the illness, the complications, and never once lead me to believe that I simply had Lyme and nothing else. In there opinion it is also an inaccurate name for the chronic illness I have.

My LLMD often talked about my autoimmune disorder more than Lyme disease. My current doctor is treating me because I am ill and we are working to build my immune system back up while attacking any bacteria, viruses or imbalance that arise.

I’m not very good when it comes to politics, but I don’t see how creating legislation to allow doctors to treat patients without fear of losing their medical license is a disservice to patients.

Dr Itkin fears that such legislation would lead to “cookie cutter” diagnosis and treatment. He says, “A compassionate provider may decide on a case-by-case basis that a patient deserves treatment that diverges from standard conventions. A law is not needed for this.”

I think he got that last part backwards. It appears that we do need a law to allow our providers to decide on a case-by-case basis that we need treatment that diverges from standard conventions. Without it we are in danger of only being allowed the IDSA “cookie cutter” diagnosis and treatment.

Originally posted by Ashley on Lymenaide

Wednesday, August 11, 2010

The New Super Mom?



Here I am about a half hour before my son's fifth birthday party (and no my house never looks this clean on a daily basis). Jumpy house was up and we were expecting about 40 guests. I'm washing fruit while Gentimycin drips into my arm via my PICC. I had also just taken a Vicodin because the Gentimycin gave me debilitating headaches and I couldn't take NSAIDs while on it.

I had also taken Ginseng and my daily low dose steroid to give me energy to get through the day, not to mention all the other oral antibiotics, natural anti-inflammatories, homeopathic tinctures, and vitamins that are part of daily regimen that keep me functioning.

I'm reminded of Alix's Ginger Rogers post about how she did everything Fred Astaire did, but she did it backwards and in high heels. That's about how if I feel sometimes if I compare myself to others. It takes a lot of pharmaceuticals and a Coke (I'm off caffeine and sugar so this is a real treat and buzz) to get me through a party. And it took me nearly a week to recover. But I did it. Not sure if that makes me crazy or the new breed of super-mom.

Sunday, August 8, 2010

Susanne's tips for feeding your gluten free family

It seems that one of the hallmarks of Lyme sufferers is having to struggle with multiple food sensitivities and chief among them is gluten. I've eaten a gluten free diet for well over ten years. But in the past several years I've discovered that my sons are gluten intolerant as well. While feeding myself had been challenging enough, feeding my kids gluten free was even more challenging. With school lunches, birthday parties, and social events, somehow I've had to figure out how to provide options for them that free them up to choose what their body needs while still engaging in everyday social activities. It's been hard! Here I share a few tips that have made this endeavor a little easier.

Breakfast on the go:
This Multi-grain waffle recipe from Ali of Whole Life Nutrition has made on the fly breakfasts possible. On Sunday mornings my husband and I make this recipe for our family. Today I made them while my husband went out and picked our blackberries. So we had waffles with fresh organic blackberries. Yum! And then there's always plenty left over to pop in the freezer for on the fly breakfasts throughout the week.

A sweet treat:
My gluten-free brownie recipe has way too much sugar but it's decadent and way too good for those glutenous eaters to turn their noses up. I make these and wrap them individually and put them in the freezer at school. Next time the birthday treats roll through the classroom there's a super yummy scrumptious treat in the freezer for the teacher to pull out for my son. He doesn't feel quite as deprived, after all their his favorite!

Pizza Pizza:
I think the hardest food for my boys to give up is pizza. Thankfully I found this super easy pizza crust mix from Namaste Foods that tastes soooooo good. For tips and pizza sauce recipe see my pizza blog post. I haven't taken the boys off dairy ... yet. So for now they get Mozarella cheese and I get goat cheese which tastes delightful by the way. But maybe we can get Kim to share her "cheese" recipe made from cashews, another great alternative to make this a dairy free treat as well. I make this usually once per week so I can tuck a pizza in my son's lunch for a little change from the usual.

Super packed on the fly nutrition for mom:
Green smoothies are the best invention ever. I feel so good when I drink these! I use it as a meal replacement or midday snack. It's a super fabulous way to load up on greens without having to eat a salad loaded with dressing.

My favorite green smoothie:
2 cups water
3 large handfuls spinach
1 apple or pear
dash of cinnamon
blend to smooth consistency with blender

Blender tip: after breaking two blenders in the first four months of smoothy making I broke down and purchased a Vitamix. Smoothies made with the Vitimix taste so much better than the ones made with others. It's now a necessity in my kitchen.

Another staple I can't live without:
I shared the recipe for Maple Granola in this blog post about Progurt. But it's worth mentioning again as it's a staple in my home. I make Maple granola usually once per week. It's fabulous to add on top of yogurt or eat for breakfast. I buy the gluten free oatmeal from Bob's Red Mill and get organic coconut shred in large pieces. Super crunchy and good for you too.

I highly recommend this cookbook from Whole Life Nutrition. It is packed with useful information and tried and true recipes. Also Ali's recipe blog is an invaluable resource.

I know we'd all love to hear what other tips you all have for living a gluten free life. So please share.

Friday, August 6, 2010

Tender loving care for Lymies


Thanks Ashley for your post on beauty care options for Lyme Beauties! One of the things I love about this blog is the ability to collaborate and share ideas and solutions. I thought I'd share a couple things as well. Since giving up personal hygiene products laden with chemicals over a year ago, I've been on a journey of non-stop experimenting. Here's my list of recently discovered chemical free favorites:

I use Pomegranate Seed Oil as a facial moisturizer. This stuff really is the bomb! I absolutely love it. I smooth it on my cheeks and over my eye lids. Yes it feels greasy but after five minutes it soaks in and my skin looks soft, vibrant, and full of moisture. The organic version from Mountain Rose Herbs is my favorite. Yes it's expensive but really does the job. Recently I've been experimenting with a concoction of Pomegranate Seed Oil, Rose Hip Seed Oil, Lavender essential oil, and Carrot Seed Extract. It's really kind of cool. I encourage everyone to experiment with the things they love! When you put something on your face it is so close and personal; you need to love the way it feels and smells. The pomegranate seed oil has an interesting nutty smell, that's why I started adding a few essential oils.

Also for my face, I created my own face soap and I've been enjoying using naturally good soap with no chemicals on my face. It's a real treat. This is just one example of my personal needs driving my product development. Pomegranate and Rain handmade facial cleansing soaps are available on my online store. Check out spirochick co-founder, Kim's review of my face soap.

For deoderant I found this Crystal Ally spray deodorant from Simply Divine Botanicals. I am so enthusiastic about this product, it's the first chemical free deodorant I've found that actually works! They also have one designed to encourage lymphatic drainage. Very cool products! Thank you Simply Divine Botanicals!

Also, I'm with Ashley on the salt scrubs. These are so easy and somewhat inexpensive to make, totally chemical free and super luxurious on your skin. Here's the link to my blog post on DIY Salt Scrubs.

Last but not the least important, everyday, multiple times per day I use my handmade soaps in the shower, at the bathroom sink, at the kitchen sink. I use it on my body, my face, my hands, and sometimes even my hair. And though I don't test my products on animals, our loyal family member, Chip, our chocolate Labrador, deserves the good stuff too! He most recently bathed in Lemongrass Poppy Seed Handcrafted Soap. I strive to make each of my soap recipes as organic as possible. I do not use any synthetic fragrances. I've found that the synthetic component of fragrance is what I'm allergic too. And I don't use dye. I regularly create over 20 varieties of all natural handmade soaps because everybody's a little different and needs something different and of course I just love creating something different all the time. Lymies you might consider the TLC Bar, tender loving care for skin and spirit. It's lightly scented with lavender essential oil and the olive oil in this soap is infused with calendula, known for it's gentle healing properties. $1 from the sale of each bar of soap is being donated to Turn the Corner Foundation. It's now on sale through August 10th.

Wednesday, August 4, 2010

Lyme Beauty

burt's bees carrot day creme 


My skin can be quite sensitive. Last year I was having a hard time finding body soap and lotion that didn't bother my skin.

I started using coconut oil instead of lotion. I even used it on my face. It worked really well but it left me super oily.

One day I splurged on a tub of chocolate scented body scrub. The stuff was heavenly! It smelled so good and it didn't bother my skin at all. The only problem was the price. It cost $15 per tub. A tub was only enough to last me three weeks.

One day I decided I was going to learn to make my own. It is so easy and it does work out cheaper. There are 100's of "recipes" online.

My favorite part about these scrubs is that they moisturize as well as exfoliate. I have really dry skin but using a scrub like this, I don't ever need to use body lotion. That is another cost saving point for the scrubs.

Homemade scrubs are a great option for sensitive skin or people with MCS, multiple chemical sensitivities. You can pick your own ingredients based on your sensitivities. Your scrub won't have any of the harsh ingredients found in most soaps and lotions.

I posted a tutorial for my body scrub on my blog Upcycled by Ash- http://upcycledbyash.blogspot.com/2010/08/homemade-body-scrub-tutorial.html

I love the scrubs, obviously, but there are a lot of other products I have discovered that have made a big difference to my Lyme Beauty Regime.

My other favorite "beauty" products-

Doc Bronner's Magic Soaps I have actually used these since I was a kid. I love the peppermint all in one soap best. I use it as body soap in the shower and as hand soap in the bathroom and kitchen. I fill a spray or pump bottle half full with water and half with the soap. It is still plenty sudsy and the bottle lasts 2-3 times longer, good value!

Dr Hauschka Shampoo and Conditioner My favorite shampoo and conditioner ever. It isn't cheap but it is good stuff!  100% solved my dry brittle hair problems.

Burt's Bees Carrot Day Creme Most face lotions contain too much aloe. My face turns bright red if I use an aloe based lotion. If it isn't the aloe, it's the perfume. The Carrot Day Creme is a nice think lotion, it does have a noticeable scent but it isn't perfumey. As an added bonus the carrot adds some color to my face! The lotion does contain aloe but it is one of the last ingredients.

Tom's of Maine Calendula Deodorant We had a friend who died of Breast Cancer when she was 26. One thing she asked all of us was to stop using deodorants that contained aluminum. After trying, I don't even know how many that didn't do anything, I finally found this one. It works and it doesn't bother my pits.

BugBand Insect Repellent Bug spray in general makes me gag. It isn't easy to find a "natural" Deet free option that specifically says it repels ticks,this one does. It still smells strong, but it is essential oils instead of chemicals and synthetic fragrance. You do have to apply it on a regular basis though, it's magic effects won't last all evening with just one application.

The next two are very personal products, but someone has to share them- 

Weleda Calendula Diaper Care My sister has a baby and this is her favorite diaper creme. I don't have any kids, but I discovered in a moment of desperation that this stuff works great for feminine dryness/vaginitis. Don't ask.

Sensuous Beauty Love Balm Forget irritating petroleum based KY Jelly. Love Balm is sooooo much better!

OK, now I'm a little embarrassed but I'll survive.

None of these products or brands have paid me, sent me samples or asked me to do a review. I just wanted to share with you some of the products that have made my sensitive life a little better. That said, just because these products work for me does not mean they will necessarily work for everyone. Make sure to read the labels to check for allergens and take it slow when introducing new beauty products to sensitive bodies.

What are some of the best products you have found
that work for your sensitive selves?

Thursday, July 29, 2010

Life Lessons Learned

Finding Self

“I couldn’t live with myself any longer. And this question arose without an answer:
who is the ‘I’ that cannot live with the self? What is the self?"

-Eckhart Tolle

I use to go to a Lyme disease support group once a month. I really enjoyed the group. It was there that I met Alix and Kim from SpiroChicks and Scott Forsgren, the Better Health Guy, as well as a myriad of other Lymies who I felt a camaraderie with.

Over the winter I moved and I hadn’t been able to make it to a meeting again until this past Tuesday.

The topic was the Mind-Body Connection. One of the ladies in the group had read the book Mindsight by Daniel Siegel.

Siegel combines Western neuroscience with Eastern meditation in an exciting exploration of how a troubled mind can right itself. Drawing on current science and case studies, Siegel, a clinical professor of psychiatry at UCLA School of Medicine, reinforces the idea that the power of reflection allows us to approach, rather than withdraw, from whatever life brings us.

The book itself sounded interesting. I have read about how stress and distress can make you physically ill. This is one of the things I explored with a psychotherapist before I was diagnosed with Lyme. She agreed it was an important aspect but she knew that there was more to my illness than just this. Gotta love the shrink who tells you, “You are sick, but it is not all in your head”.

It was the discussion that was opened up by the topic that had a profound effect on me though. The Self and the importance of Clan to your healing.

I was stunned by the realization that I give no time to my “Self” and I don’t have a Clan. 
 
The Self-
 
You may call this the spirit or soul, to me it feels right to call it the Self. What is the Self? This is the true you. The brain is an organ and the body is a vessel but neither is who you are.

Where does the Self exist? I have no idea. To be honest the whole idea is more than I can really comprehend. It is like the question, “Where does the Universe end?”. You know that the universe doesn’t end; it is everywhere and forever. At the same time you can’t really visualize that as reality.

Some people believe that the Self exists in the heart center. This feels right to me. Not only does it feel right, but feeling this makes me feel more grounded. I spend a lot of time living in my head. Living in that state makes me feel disassociated from my body, or maybe it is more than that, I am disassociated from my Self.

I am always trying to work things out, to figure and to fix. I rarely if ever take the time to just be and to accept.

You are probably asking what in the world this has to do with my health. By letting go of the frantic workings of my mind; the worries, the fears, the obligations… If I can just stop, just be, I feel myself relax, my mind becomes calm. The stress and the worry melt away. Miraculously things become clearer, my mind can function better. There is no doubt that this is a much better, much healthier state to be in. I need to learn to connect with and respect my Self.

Clan-

I have a lot of friends… on facebook. I have a good family, we all care about one another.

This is not the same as having a “Clan”. A true clan is having people you can depend on, who understand you and accept you. People you can open up to and really share your life and your feelings with. A Clan is more than just a few people, a Clan is a large functioning social network. The Clan needs to include people who exist physically in your life, not just online.

To be honest, I don’t know if I have ever had this in my whole life. Sadly I have always prided myself on not needing anyone. I thought I was strong. Now I can see that “strength” was actually fear and my pride was a wall to keep me from getting hurt. I realized this Tuesday night when the LLMD who facilitates the group told us to ask for answers from our hearts not our heads.

As we continued to talk about Clan, aura and energy came up. Recognizing the people in your life who fill you up and those who are toxic. We need to surround ourselves with people who give us energy and to avoid those who steal it.

This is a really hard realization to face. What do you do when you know without a doubt that your relationship with best friend or your family members are toxic? Can you really give up those relationships?

I remained completely open as the meeting went on , but I was a little in shock. I have some major things in my life that I need to work on. Pills and potions aren’t going to cure me alone. I need to take an active role in my healing. I thought I was but now I realize I was going about it all wrong.

I’m often commended for my positive outlook and for not letting this disease or life get me down. It’s true, I don’t, another thing I have always been proud of. Unfortunately what I realize now is that even here I am hiding behind that wall. Fooling everyone including myself. My attitude has come more from avoidance than truth.

So what do I do now? I am "little girl lost", I don’t know my Self and I don’t have a Clan.

Finding Self, I know how to do. Sticking with it is the hard part. I’ve had glimpses of my Self in the past. Sometimes the truths there are hard to accept. Perhaps that is why I have always given over to my mind which has allowed me to avoid the realities of accepting what my Self has to say.

As for finding a Clan, I have no idea where to start. I don’t work and I’m currently not the active person I use to be. Where am I supposed to find these Clan members? And then there is the fear of not being accepted. This is an issue that stems from my childhood and teen years. Suffice it to say, kids can be mean. You know that elementary school comeback “I’m rubber, you’re glue, what ever you say bounces of me and sticks to you”? I never had that rubber armor. I was just glue. Everything rubber said stuck to me and added to that wall.

I am determined to break down my wall. I can see how it is negatively affecting my life. I can also see how much fuller my life could be without it and how that in turn would positively affect my health.

Tuesday, July 27, 2010

Udi's to the Rescue, Sweet Stuff

Lemon Streusel Muffins

A few weeks back I was so excited about my new gluten free find, Udi's Bagels that I wrote a post about how much I loved them- I Love Udi's. Udi's read my post and because of that I recently had the opportunity to sample Udi's Gluten Free Foods line of muffins and cinnamon rolls. Muffins are one of the foods I've missed most with my gluten free diet so this was quite a treat!

Saturday morning my husband and I made up a platter of muffins a frosted cinnamon roll and mugs of Teeccino (a caffeine-free coffee alternative). It was a warm sunny day so we decided to take our amazing breakfast outside.

I realize not all Lymies eat sugar, but many do. I hardly at any sugars for the first year of my treatment. My biggest treat was a couple a squares of 85% dark chocolate. When my digestive issues got under control I did started eating sugars again, but I am careful about moderation. If I overdo it, I pay for it!

What we tried-
  • Lemon Streusel Muffins
  • Blueberry Muffins
  • Double Chocolate Muffins
  • Cinnamon Rolls
It was quite a satisfying breakfast. It felt so novel to be eating muffins after going so long without them. So many gluten free products look good but fail on texture and taste. Not so with these products.


What we thought-

All the products look and feel like the real deal. I highly doubt anyone would even know that they were gluten free. My dad came to visit before we finished all the cinnamon rolls. He hates all my gluten free foods and never holds back from telling me how terrible they taste. I didn't tell him the cinnamon rolls were gluten free and he didn't notice anything suspect about the taste.

My husband and I both agreed that the Double Chocolate Muffin was the best. It had the best flavor and the texture was the best of all the products. The chocolate chips throughout really make these great muffins.

My second favorite was the Blueberry Muffin. Like most blueberry muffins, I wish it had more blueberries, I like a lot of berries! My husband's second favorite was the Lemon Streusel Muffin. He thought it had better flavor than the blueberry muffin. I agree that it had more flavor but for me it was too lemony. Both muffins had good texture but it wasn't quite as good as the Double Chocolate Muffin.

The Cinnamon Rolls are yummy too. They aren't as ewie gooey as fresh cinnamon rolls but the texture is good and the frosting adds a super cinnamony taste. I love cinnamon so this was perfect for me, my husband thought it was a little too much cinnamon flavor.

None of the products taste like a sorry excuse for their gluten counterparts. They are all good when it comes to taste and texture.

I'm still more of a savory person. Udi's wholegrain bread and bagels are still my favorite of their line of products. I'm happy to know where to go when I get a craving for something sweet though!

Udi's products are gluten free, dairy free, soy free and nut free. 

Platter of Yummy!

You can find Udi's products at Whole Foods Market and at many Natural/Health Foods stores. Some larger supermarkets do carry the products. You can also order Udi's online from their website- http://udisglutenfree.com/products

If you are interested in Teeccino, the herbal coffee alternative I mentioned, here is the link to their website- http://www.teeccino.com/

Saturday, June 19, 2010

A Bit of Mourning

Tonight I can't sleep. It is warm and humid and Borrelia do not like heat. Our youngest has awakened several times, anxious and in pain. Though she's finally sleeping, I've given up for the moment and here you find me. At the computer at 4am. Perhaps I'll sleep better in a bit.

Each time I sit down to the computer, I face the evidence my life has changed. In high school, I was blessed with an English teacher who taught me to write well. With Lyme, what once took minutes can take hours. I read and reread because of multiple errors; errors I never made before.

My girls want to learn to play piano. Our teacher encourages parents to take lessons first so they can help their child during the week at home. This week I took my second piano lesson and teared up. I don't know how to explain it other than the piano acted as a magnifying glass to the weaknesses that have developed in my body. The muscles in my hands and arms were screaming their fatigue. I felt there was a wrestling match taking place between my brain and the rest of my body. The piano teacher was patient and kind as I tried to explain my emotions. I learned if I look at my hands as I play, my brain has an easier time communicating with the rest of my body. I sense piano could become a form of physical therapy in my healing. It also raises the question should I look at myself as I walk? I may try this in a safe place in our home as my legs occasionally have a mind of their own.

To face Lyme, it often takes superhuman strength, both physically and emotionally. Perhaps tonight I needed to mourn for a bit the person I used to be, as I feel the need for sleep returning. Sweet dreams and bless you for sharing this journey.

Tuesday, June 15, 2010

A Perfect Example

Ticks
Lyme disease has a tendency to consume your life. Not only the sick person's life, but the lives of our loved ones as well. It is unavoidable.

This isn't all bad. Our lives are so consumed that it seems no matter who we talk to we eventually end up on the topic of Lyme disease. Which, if nothing else, helps to spread awareness.

Yesterday my car broke down and I had to get towed. Guess what? The tow truck driver had never heard of Lyme disease. He didn't know that we live in a high risk county. He didn't even think we had ticks here.

I made sure to tell him all about the tick I found in my hair this April after walking along the paved river trail.

He knew there were ticks about an hour south of us where it is significantly hotter all year long.

"Oh, you mean where the deer and the birds that carry the ticks go for the winter?"

He has decided he needs to do some research.

I'm not the only one who constantly finds myself talking about Lyme, my husband does too. It usually starts something like this, "so, what does your wife do?", and there he is talking about Lyme disease again.

Today he came home with a story that perfectly illustrates why everyone is at risk of contracting Lyme disease, no matter where they live or how outdoorsy they are.

My husband explained to a new co-worker about how his wife (me) doesn't work because she has Lyme disease.

These are the basics of the tick experience the co-worker shared with my husband-

A few years back he decided to check out property in Virginia (it is a lot cheaper there than it is here in California). He had some friends out there that he went to stay with.

They went out hunting and came back covered in ticks. Literally from the sounds of it. They brushed them off and removed them, then carried on with life.

A few days later, back in California, the man went to a office where he had some business to attend to. After he left the people in the office started finding little ticks all over the place.

The man was horrified. If he had left ticks all over the office, he must have left them all over the plane and airport as well!

He knew about Lyme disease. While he doesn't appear to have been infected, he knows the possibility exists that one of the ticks that hitched a ride on him may have carried Lyme. One of them could have bitten and infected the next person it came into contact with at the airport, in the plane or back here in California.

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

Diagnosis

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!