Tag Archives: Lyme Disease

The Lyme Disease Challenge is HUGE

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On March 5th and 6th, Tom and I took the Lyme Disease Challenge (LDC) to bring awareness to Lyme Disease and raise funds for the International Lyme and Associated Diseases Society (ILADS).

With some light-heartedness and a twist a of humor, we created two films. First, I “take a bite out of Lyme” in my film by showing my daily regimen of supplements and medications I ingest to help me get out of bed each day (well, some days at least). I have hope that I will one day be in remission from this terrible illness and I strive to keep laughing and smiling through it all.

As my husband, Tom has also been impacted by my battle with Lyme Disease. Ever the comedian, his film demonstrates that sometimes Lyme just ruins things-your day, your month, an outing with a friend or even just a simple cup of coffee.

For me, the highlight of this campaign came when the Real Housewives of Beverly Hills star and Lyme Fighter, Yolanda Foster, commented “Amazing” on my film and retweeted it. Luckily, I was already laying down when I saw the tweet or I might have fainted.

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What began as a grassroots campaign started by 5  amazing woman (Julie, Melissa, Özlem, Kim and Lisa), has gained order soma overnight cod some serious traction using social media. Celebrities that have already taken the challenge and showed us their best sour faces include:

Angeli Vanlaanen, Olympic freestyle skier

Ronde Barber, retired football cornerback for the Tampa Bay Buccaneers

Yolanda Foster, Lyme Fighter and Reality star from the Real Housewives of Beverly Hills

Elena Delle Donne, WNBA basketball star

Erin Andrews, journalist and host of Dancing With the Stars

Tom Bergeron, host of Dancing With the Stars

Tiki Barber, retired football running back for the New York Giants

Debbie Gibson, singer-songwriter, record producer and reality TV star

William Shatner, actor

Dr. Oz, health expert and talk show host

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When the Challenge aired on Dr. Oz last Thursday, we knew we were making some serious progress with this campaign!

I applaud the efforts of the LDC team and am so proud of the hard work by the entire ?Lyme community. It’s just mind-blowing what a group of people can accomplish. Although it may not always seem like it, PEOPLE ARE LISTENING and PEOPLE DO CARE.

With May being Lyme Disease Awareness month, be encouraged to keep sharing your stories, posting your videos and pics of you taking the Lyme Disease Challenge and challenging others to take it too. Let’s keep this momentum going!

We must find a cure!

#lymediseasechallenge #takeabiteoutofLyme #changemaker #hopespreader

 

 

 

 

A Bump In The Road: Dealing With An Interstitial Cystitis Flare

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I encountered a discouraging bump in the road last week. In addition to Lyme Disease, I have an inflammatory bladder condition called Interstitial Cystitis (IC).

Marked with bladder pain, urinary frequency and urgency, I have had this condition since 2005. It was fairly well-controlled for about 4 years. I even thought the most difficult days of dealing with IC were behind me. Unfortunately, this flare-up shows my bladder has more healing to do.

As I struggle to understand why I am once again experiencing such severe bladder symptoms, I decided to take a specialized urine test from a lab called Pathogenius. The lab performs testing at two different levels using a culture and DNA detection. My nurse practitioner only recently began working with this lab. Whether or not a patient improves using treatments designed around this testing method, remains to be seen.

My level one culture came back negative. However, the DNA portion of the test detected abnormally high levels of a bacteria I was unfamiliar with called Prevotella Bivia. This bacteria is not a tick-borne infection like the others I am battling. In fact, some amount of this bacteria appears to be present in healthy individuals and poses no trouble to them.

Perhaps my immune system, already suppressed by multiply systemic infections, could not keep this bacteria in check and my bladder became symptomatic again.

That’s my best guess.

After reviewing the results, my nurse practitioner presented me with two treatment options:

Option A is to instill medication directly into my bladder via self-catheterization. A two-week course of medication and supplies arrives at my house from a compounding pharmacy. It’s not covered by insurance, so my out-of-pocket cost would be somewhere between $200-$500. A second, two-week round of the instillations is usually required. For a one months supply, the total cost is between $400-$1,000. This is in addition to the $1,000+ per month my husband and I currently pay out-of-pocket for my treatment.

The pros of this treatment are:

1) It delivers medication directly into the bladder so the antibiotics do not have to bypass the GI tract where it can disrupt normal gut flora or interact with the other medications I am taking.

2) It’s an innovative new approach to treating interstitial cystitis.

The cons are:

1) It’s expensive to do and I question whether it’s sustainable for the average person over a long period of time. Several courses of treatment could be required to achieve maximum benefit.

2) Repeatedly doing bladder instillations carries the risk of contracting a urinary order soma online from canada tract infection, which is then treated with another oral antibiotic.

3) This treatment is so new that it is not yet known what the rate of success is.

A pit in my stomach formed as I did the math. With our current situation, I felt Option A would not be feasible for me. It’s just too costly.

As FOMO set in (Fear Of Missing Out on a treatment that might be THE treatment to finally cure me), I reluctantly asked for an option B.

This option is to add yet another antibiotic to my already rigorous treatment. In this case, it would be the broad spectrum antibiotic, Clindamycin.

The pros of this treatment are:

1) It’s cheap. In fact, I would pay nothing with my insurance.

2) In addition to treating the Prevotella Bivia in the bladder, it also targets the Lyme bacteria in the nervous system.

The cons are:

1) Since this antibiotic kills bacteria from such a broad spectrum and I am already on an aggressive antibiotic protocol, it could increase my risk of developing candida overgrowth or worse, a potentially life threatening GI infection called C-Diff.

2) I need to take this antibiotic three times per day, making it difficult to schedule it around all my other medications.

3) It’s also hard on the digestive tract.

4) Because this antibiotic has penetration into the nervous system for the Lyme bacteria, there is a high likelihood of experiencing an increase in my neurological symptoms as the new antibiotic kills those bacteria.

Truthfully, I  really didn’t like either of the options. Neither annihilating my gut nor going in debt seem like great solutions. In the end, I chose the only affordable route for me. I added the fourth oral antibiotic to my treatment for the next 10 days. Following completion of this antibiotic, I will re-test with Pathogenius to see if there are additional infections.

During this course of treatment, I have significantly upped my intake of probiotics and digestive enzymes to help protect my gut and decrease the risk of C-Diff and Candida overgrowth. As predicted, I am noticing an increase in my neurological symptoms and worsening insomnia has been the most difficult symptom to endure. Luckily, I am already on day 6 of my 10 day plan.

I am hoping this new treatment will shed light on potential causes of Interstitial Cystitis in some people and yield improvements in my symptoms.

I will post an update after I have completed this course of treatment.

Bump in the Road

Things That Go “Tweet” In The Night

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My dear friend, Lisa, sent me a gift this past Christmas. It was a plastic, motion-sensor cardinal with instructions that I could throw it away if it was too annoying.

Cardinals are near to my heart. For a year and a half, I was too ill to leave the house. Through the office window, I spent many mornings watching as a pair of cardinals sang beautiful duets with each other. Their colors were mesmerizing. For me, they became a symbol of hope to remember there was life outside the walls of my apartment.

As I grew stronger and began to leave the house, I no longer saw my two, favorite birds.

Glimpses of them are rare these days. From time to time, I hear their lovely songs cascading from the treetops. I like to imagine the cardinals are bringing hope to someone else.

Every once in a while, a sweet friend or family member will send me a cardinal knickknack as a reminder of how far I’ve come on this journey. I opened Lisa’s gift and excitedly pulled out the small strip of paper that was blocking the motion sensor.

The plastic cardinal began to sing, “Tweeeet. Tweet tweet. Tweet tweet. Twee-e-e-e-eet.”

“This really works,” I thought to myself as I perched the cardinal on the mantle.

Dog number one walked buy soma pills online past and the cardinal immediately began to sing.

Then, dog number two walked past and sure enough, it started to sing again. In fact, dog number two walked in front of the cardinal a few times, each time triggering the motion sensor.

Once again, the cardinal chirped when Hubby came close.

Realizing that the mantle was probably not the right place for this gift, I did what any sentimental gal would do with a hypersensitive, plastic, motion sensor cardinal:

I stuffed it in the sock drawer.

I couldn’t possibly toss it in the trash! I was very touched by Lisa’s thoughtful gesture.

Last night I had terrible insomnia from recently adding some medications to my treatment protocol. Frustrated by my inability to fall asleep, I got up to take the second half of my sleep meds. I fumbled around in the darkness until I had my pill container in one hand and a glass of water in the other. I took my sleep meds and set my glass on the dresser.

As I turned to crawl back into my bed, I heard a muffled sound coming from the top dresser drawer.

“Tweeeet. Tweet tweet. Tweet tweet. Twee-e-e-e-eet.”

The Absent-Minded Patient And A Treatment Update

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The other day, I couldn’t find my cell phone. I looked under the bed, on top of tables and shelves and literally under every scrap of paper in the house. It had vanished.

Where could it be? I hadn’t even left the house in a week due to a blizzard and not feeling well from changing up my treatment plan.

Suddenly, I had an inkling, a vague recollection of what I was doing when I last had my phone in my hand.

I ran to the kitchen and threw open the refrigerator door. There, on the top shelf next to a loaf of Udi’s Gluten Free bread, was my cell phone! (This would be the appropriate place to insert an emoticon- the one with the wide-open eyes and a line for a mouth that basically says, “Oops. I did something stupid.”)

As I reached in to grab my already chilled phone (I estimate it had been in there for about an hour) I said out loud to absolutely no one, “And this folks…This is a perfect example of why you too should have the Life Proof cell phone case!”

I’m sure everyone has left their phone in the refrigerator at least once, right?

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I have a legit excuse for my absent-mindedness. I promise.

About two weeks ago, my nurse practitioner decided it was time to intensify my treatment. This buy soma online fast generally leads to a few steps backwards as my body adapts to the changes. This time around however, the changes seemed to have stirred up some old symptoms with a vengeance.

We included the antibiotic, Flagyl, into my protocol to target bacteria that are in a specific form called, “cyst form.” This antibiotic packs a powerful punch and has left me feeling more fatigued than usual and foggy-headed (obviously).

I also said goodbye to my trusty companions of 16 months, Banderol and Samento, and added a more potent herbal formula, called A-L Complex, by Byron White. With an increase in joint pain, muscle spasms and a flare up of Interstitial Cystitis (an inflammatory bladder condition that I have had for 10 years), just one drop of this formula makes me feel like a car ran over me!

One measly drop!

I always say, “If I must go through this, at least it’s winter so I know I am not missing much.”

With today’s temp at a frigid 12 degrees, I feel sorry for anyone who has to leave the house!

Next week, I am meeting with my local Lyme doctor to discuss some strategies to deal with the increase in pain and fatigue I am experiencing. I hope he has some brilliant ideas for me.

To see my full, updated treatment plan, click here.

 

Pilates And Lyme Disease: My First Post On Mind Body Green

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Yay!

I awoke this morning to some wonderful news. An article I had submitted to Mind Body Green a few weeks ago has gone live!

After being bedridden and housebound for such a prolonged period of time, people often ask me, “What are you doing to regain your http://nygoodhealth.com strength?”  Please click on the link, How Pilates is Helping Me Heal From Lyme Disease, to learn how The Pilates Method of exercise is an important tool in my recovery.

What are you doing to improve your strength? Please feel free to leave a comment below.

Adjusting To New Holiday Traditions

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In 16 years, not a single snow storm or blizzard deterred me from seeing my family during the Christmas season.

Dating back to my freshman year of college, I would pack the car to the brim and drive to Minnesota. I usually brought a giant pile of dirty clothes to wash at my parents house, as I had typically run out of quarters by the end of the semester. In the years I had my job as an Occupational Therapist, I loaded the car with gifts that I had proudly purchased for my family. When I got married, my husband became part of my holiday traveling tradition also.

By 2011, I was no longer well enough to take those trips.

Christmas with my family is huge. Parents, sisters, brothers, cousins, children, grandchildren and friends all congregate at my Aunt’s house in what invariably turns into a 2-3 day marathon of food, fun and some serious card playing. Games like Canasta, Continental Rummy and Nuts have been a family tradition as far back as I can remember. I grew up playing cards and learned to count while playing poker with my grandmother. My cousin, Julie, is the undisputed card-playing champion of the family. Her hands move so fast, at times they’re blurry.

I miss those days.

Not yet strong enough to endure the Christmas festivities, I find myself trying to create new traditions in Chicago.

In our apartment, we have a small, buy carisoprodol canada decorated tree that sits on our mantel. We tried a 7 foot tree one year, but my beagle tried to eat it so we had to downsize.

Every year, I pose the beagles in costumes just long enough to snap a pic or two. I have a reindeer, a Santa suit and a snowman costume. The costumes are decided based on their cooperation. This year, I had a pocket full of yummy treats so I had their full participation.

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Like last year, my mother will be coming the day after Christmas. We will partake in our annual tradition of driving around looking for the best displays of Christmas lights. We have been doing this since I was a child, first in my hometown of Winona, and now in Chicago. This is one of my favorite Christmas-time activities.

There are moments however, where I realize I am not yet adjusted to my life with Lyme and such an uneventful holiday season. There will be no big, family meal and no presents to unwrap, as every spare cent we have goes towards my treatment. Such quietness seems foreign to me.

Hopefully, I will one day soon be able to enjoy Christmas and the busyness once again!

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Merry Christmas and Happy Holidays from me, Tom, Seven (15 yrs) and Caylie (12 yrs)!

 

Viewing Elephants On My iPhone

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The other day, I was walking at the mall with Tom, enjoying the Christmas displays and celebrating how far I have come. I have been tolerating my treatment plan well and slowing increasing a new supplement called Mito Lipo to improve my mitochondrial function and give me more energy.

“I think I am turning a corner with my health.” I cheerfully said. To illustrate my point, Tom abruptly made a 90 degree turn in front of me while dancing.

The day after my outing however, I was hit with such severe fatigue that I have since been cheap soma online overnight cooped up in my bed for the last two days. I don’t do lying in bed well anymore. I’ve got dreams, ideas and things I would like to accomplish. My mind maybe capable of doing more, but my body does not always receive the memo.

So, here I lay in my cozy bed viewing elephants on my iPhone as I recuperate. I know this is a temporary set-back. Next, I will check in with various members on the local Lyme forum and chat with a few friends on Instagram. What would I do without social media?

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My Holiday Treatment Plan

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The sign that I have the right health practitioner is that I can leave our appointments feeling encouraged. I am not confused or doubting our treatment strategy. She answers my questions and I can see that there is a plan with lots of good options. Having options is so important to remaining hopeful along this extensive road to recovery.

Yesterday, I had a follow-up consultation with my nurse practitioner to discuss my treatment plan over the next two months. I would like to enjoy this holiday season as much as possible. As of now, the detox and die-off reactions are manageable. Thankfully, Nurse P. agreed with me and we decided we would only make some minor adjustments.

These are the areas that need attention over the next two months.

1. Currently, I have an elevated liver enzyme.

I have been taking Rifampin for almost four months. The national website, LiverTox, reports that 10% to 20% of patients can experience a short-term elevation in liver enzymes while taking this medication. In my case, my ALT enzyme (Alanine Aminotransferase) is mildly elevated. The exact mechanism is not well-understood as to why this occurs in some people. At this time, I do not need to discontinue the medication, but I need to carefully monitor my liver enzymes while taking it. I have begun to take a liver support supplement called Hepa Plus to help my liver metabolize this medication better. I will also be having blood work done every 3 weeks to see if my level has remained buy soma online cheap stable or perhaps even lowered.

2. I am still exhibiting signs of hypothyroidism.

Although I am taking Nature-Throid, my previous dose increase did not seem to bring my thyroid levels into the normal range. In fact, there was no change.

Enter Rifampin again.

Rifampin has been shown to induce cases of hypothyroidism in some patients. This is very likely why I did not see an improvement in my numbers despite increasing my thyroid medication. I will be raising my dose again and will also have to keep close tabs on my thyroid levels. Hopefully, getting my thyroid into the normal range will improve my energy. This has been difficult to achieve.

3. I am currently in the midst of doing a second cycle of Alinia.

Alinia is a medication that has activity against parasites, bacteria and some viruses. With one pill, we have been able to target multiple organisms. When I finish this course of the medication, I will be switching to treatment using colloidal silver. I have some limited experience with colloidal silver in the past, so I am interested to see how it combines with the rest of my treatment.

© NASA Goddard Space Flight Center

© NASA Goddard Space Flight Center

We will revisit my treatment plan again at end of January. At that point, I anticipate some significant changes.

Please feel free to leave a comment. I would love to hear how you prepare for the holidays. Will you be changing treatment strategies or keeping things the same?

Paleo Pumpkin Walnut Pancakes

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It has literally been years, decades maybe, since I have eaten anything that even remotely resembled a pancake. Maybe it’s the sudden and drastic change in temperature that I now find myself craving some sort of comfort food. Below is the recipe I adapted from Wellness Mama to help satisfy my hankering for pancakes.

pancake 1

Ingredients: 

2 eggs

1/4 cup of pumpkin purée ( I used Farmer’s Market brand from Whole Foods)

1 Tbs of walnuts

1/8-1/4 tsp of cinnamon (I love cinnamon so I used 1/4th tsp)

Small pinch of sea salt

1/2 cup of your favorite berries (I used blackberries)

Coconut oil

Grass-fed butter if tolerated

Directions:

1. Whisk together the eggs, pumpkin, cinnamon and small pinch of sea salt

2. Add in walnuts and whisk a few more times

3. Warm pan over medium high heat (I used a cast iron skillet).

4. Place a Tbs of coconut oil in the pan making buy soma canadian pharmacy sure to cover the bottom.

5. Place 2 Tbs of batter in the pan and cook until golden brown.

6. Flip the pancake over and brown the other side.

7. Place pancake on a plate. If you can tolerate butter, I placed a small pat of butter on each pancake to melt while I made the next one.

8. Makes about 5 small pancakes.

9. Top with your favorite berries.

Prep time: 5-7 minutes, Cook time: 10 minutes, Total time: 15-17 minutes

pancake 2

Verdict: 

It was pretty good and I ate the whole stack! I did miss a bit of the sweetness of a traditional pancake so I think the next time I make this recipe, I will blend in a 1/3rd of a banana or so.

Enjoy!

Do you have a favorite paleo pancake recipe? Please share!

Blogging Saved My Life

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© Christian Schnettelker

© Christian Schnettelker

Okay, so maybe blogging didn’t literally save my life. It has however been a crucial part of my healing journey this past year.

I recently passed my first anniversary (or blogiversary) on The Lyme Road. When I began the blog, I intended on a place where I could process my feelings and work through the pain and difficulty of a prolonged, gloomy season in my life. I hoped that by writing bits and pieces of my story, I could boost my spirits. I wanted to let go of the past and embrace the possibilities of my future.

My intention was to inspire myself to keep believing that I could live joyfully while enduring a chronic illness. On October 26th, 2013, I pressed “Publish” for my first post. Much to my surprise, friends, family and strangers read the post. Even my very busy doctor took a moment out of his day to view it and write a comment!

I never really considered others might be interested in the story I had to tell. I didn’t imagine people would actually be following my progress! I am honored that my story has served as encouragement to others. I am so grateful to all of you who have continued to read my posts, comment on them, email and message me!

Blogging has been an amazing platform to help me cope and aid in the healing process.

8 Ways Blogging has Been Crucial to My Healing Journey :

1. It boosted my self-esteem.

I had lost a lot of my life to illness. My confidence had been badly shaken. Blogging helped me realize that I still had gifts and talents to share with the world that weren’t dependent on whether I was well. I accomplished a post if I just kept working a little at a time.

2. It gave writing back to me.

When I was a child, I used to spend hours in my room writing story after story with abandon. In growing up, getting older and getting a real job, I lost that passion. Years of text books, heavy with medical and therapy jargon, had stifled my creativity. Even though I may only ever make enough money for a monthly trip to Chipotle, blogging has allowed me an avenue where I can explore my creative side. It feels so good be to writing again!

3. It’s provided me with free therapy.

I held on tightly to painful memories not knowing how to safely release them. Through the power of words, I was able to cry and grieve my heart’s most buy soma online overnight distressing moments. The result has been a profound understanding that although there is difficulty in life, hope can fill me. That’s ultimately what I want for myself–a life filled with hope.

4. It gave me a social life again.

I do my blogging at home while sitting on the couch or lying in bed. I could not have guessed that I would meet such a kind, helpful group of people online. I am lucky enough to have developed real friendships with several of these people. I know that as I connect and network with other bloggers, I will continue to meet some wonderful people.

5. It allowed me to take risks.

I have always loved to take a risk, learn a new skill or try something different. For years, I had to extinguish that desire and make the pursuit of healing my number one priority. I was too weak, too sick and too tired to dream of embarking on an adventure. Blogging has help me to find courage to try something new again.

Shortly after I began writing, I guest posted on a few other blogs. Then, I decided to take a chance and submit a few posts to Mind Body Green, a huge health and wellness website…

6. And blogging showed me that I still have a lot to learn.

The first post I sent to Mind Body Green was not the easily sharable format they use on their website. My second post to them sounded like I was trying to sell something. I realized I needed to take time to learn and develop a writing style that is unique to me.

I have time to make mistakes, learn from them and take more risks.

7. It taught me that support can come from unexpected places.

Of course, I expected that my family and a few close friends would read my blog. What I did not expect however, is that support, empathy and encouraging words would come from other people’s mothers, old high school classmates, ex-colleagues and strangers from around the world! It truly has been a blessing to me and a source of great comfort.

8. It has helped me to see I have a choice.

I have a choice to not let my heart be in turmoil over my current circumstances. I can daily choose to renew my thinking by focusing on good, pure and lovely things. In almost every post I write, I am attempting to illustrate this simple equation:

Focusing on the good equals more peace in my life.

Focusing on the bad equals more anxiety and confusion.

Such a simple formula!