A Tourist’s Guide to Lyme Disease

 

Are you just starting out on your Lyme Adventure?

Do you feel like a tourist, making many stops along the way, but not getting anywhere?

Read on to learn how to have a successful Lyme adventure!

Foods To Help You Heal

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Kale, broccoli, bacon and chicken cooked in olive oil

Each person’s Lyme adventure is different, since Lyme affects body chemistry differently. HOWEVER, one constant with Lyme is that it LOVES SUGAR! Who doesn’t, right? So, your number one job is to eliminate as much sugar from your diet as you can. The sooner you do this, the better for your body and cells to heal!

Below are some foods that may help you feel better and will help your cells to rejuvenate:

Olive oil

Organic proteins like chicken, pork, and turkey (5 oz or more per large meal to help maintain energy levels)

Organic liver and organ meats

Leafy greens like kale and spinach

Fresh Garlic

Green Tea (brewed at home, not purchased with artificial sweeteners)

Green vegetables like cucumbers, asparagus, and broccoli

Plain water

FOODS THAT MAY EXACERBATE SYMPTOMS:

Carbohydrates (bread, crackers, desserts, cereal)

Fruits (Lemon is a fruit! Be careful adding this to your water to detox–it may not help you feel better!)

Nightshade vegetables: tomatoes, potatoes, eggplant and peppers

Nuts and seeds (and their “cousins”, like nut flours)

Eggs (organic eggs may also cause a problem, so watch how you react after consuming)

Dairy

Artificial sweeteners like those found in Gatorade, Vitamin Water and Seltzers

An important note about Gluten:

Many people are advised to eat ‘gluten-free’ when they are diagnosed with Lyme. But I caution you. Instead, become a label reader and compare the carbohydrates in gluten-free products like bread, chips, and crackers to wheat made ones. What do you notice? Exactly. They are pretty much the same in terms of carbohydrate content. So skip the gluten-free processed products because it will only make the Lyme bugs happy to have sugar in your system, and your inflammation worse.

What’s Your Pain Index Today?

Each day is a new adventure in pain! Realize that your pain levels can be directly linked to the food you eat, so document what you eat and drink each day. Document how you feel on a 1 -10 pain scale. After a few days, you should start to see patterns emerge as to what foods your body likes or doesn’t like.

Supplement City

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Make sure the supplements you are taking are ‘whole food’ supplements and not synthetically made ones. Your body needs all the whole food it can get, and if you are adding toxic chemicals to your already compromised system, you can be wasting valuable healing time.

A tip about taking all those supplements: Use a Sharpie to label the bottle cap with the number of pills and how many times you need to take it each day. It will make refilling your weekly pill-box that much easier!

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Be sure to keep all those whole food supplements flowing through your body. Get yourself a 20 oz container to refill throughout the day. You should be drinking up to 90 oz or more a day! It seems like a lot, but if you keep that water bottle with you, you will find that you can easily drink between 32-40 oz per meal….that gets you very close to or even over 100 oz just on meals alone! Drinking in between meals only adds to your daily totals.  So get yourself some 20 oz refillable bottles and starting drinking!

 

The Lyme Bible

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Having Lyme is truly an adventure! Below are the steps to help you create your own Lyme Bible that grows along with you as you trek along the winding roads of Lyme disease.

Get yourself a 3 inch binder in the color of your choice—green perhaps?

Put in pocket sleeves, at least 6 to start. Different colors for each practitioner can help you stay organized.

Put a post-it note on the front of each pocket with the name, address, phone number and fax number of the doctor or practitioner.

Each time you go to a doctor, take a notebook and write down all pertinent information. Date and label the page and be sure to note the follow-up appointment in your notes as well.  Add your notes to the corresponding pocket at home. (You may want to invest in a large, fashionable tote bag instead of a purse so you can carry your Bible and notebook more easily to appointments.)

Add pockets as needed for blood work results, MRI scans, food charts, or whatever information you feel will be important to remember on your journey through Lyme.

Create a working document that lists your medical history prior to and including Lyme. Note any physical, mental, and emotional changes as you go through your healing process. Update this chart monthly so you can see positive or negative changes along the way. Share information with your practitioners so adjustments can be made if needed.

 

ATTITUDE IS EVERYTHING!

Your best way to confront Lyme is by thinking like Watty Piper’s Little Engine …I think I can…I think I can…I think I can….

Being positive, even angry some days, will get you farther in your treatment then sitting back and ‘waiting’ for things to change.

Look for new ways to heal. Read, research, and revise your thinking. If a method of healing sounds too good to be true, it probably is, so double-check any quick heal claims with reputable clinicians and practitioners. The only way you will get better is by putting in the effort to learn and find what works for you!

Surprise! Medical Doctors Don’t Have All The Answers

20160619_093832_resizedIn your Lyme adventure, realize that you will be making many stops along the way to wellness to take in the sights and scenery, mostly found in doctors’ offices. And yet, once  there, you may slam into bumps that slow you down. You may decide to make appointments with various medical doctors, only to discover that they listen to only one symptom, and in turn, misdiagnose you. You may receive a diagnosis like “eat right and exercise”, that won’t give you the guidance you need to heal.  And you may find that those with an MD after their name aren’t the ones who can really help.

LLMD’s are very good at their treatments, but they can be costly and not very timely for you in scheduling appointments.  This author heard of an LLMD about an hour away from her home, but needed to wait 6 months in order to see him! Not wanting to wait that long for her symptoms to become even more debilitating than they already were, she researched a naturopath, a dietician, and a later on in her healing, a holistic practitioner.   While this is not the conventional route to healing, she found that those without an MD after their names actually were willing to take the time to work with her and help her begin the healing process. Instead of being laid up in bed or in a hospital, six months later, she is working in her garden, reading for a half an hour or more at a time, and genuinely being able to get through her summer days without requiring to rest every few hours. Every person has their own path to follow, but be assured that it may not be the one you have been taught to follow all of your life! Be willing to try new treatments and protocols. Your body will thank you!

BRAIN FOG SLOWING YOU DOWN?

TRY THESE 5 TRICKS TO KEEP YOUR SANITY WHILE YOU HEAL!

  1. STAY IN ONE PLACE AND COMPLETE THE TASK AT HAND. Zipping around the house like a squirrel running up a tree leaves too many little jobs to finish!
  2. USE POST IT NOTES to remind you to do simple jobs like switch the laundry. Put these in high-traffic areas that you will see.
  3. TAPE INVITATIONS RIGHT ON THE CALENDAR after you write the information down.
  4. ORDER GROCERIES ONLINE. Many stores save your lists, so review your last week’s order before adding new items. 
  5. EAT LOTS OF LEAFY GREENS! Kale has many nutrients in it that help rejuvenate cells, especially those foggy brain cells!  Create your own ways to eat kale in salads, eggs, and meat dishes.  (I don’t recommend Kale brownies, however…)
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I hope you enjoyed this guide to Lyme and tricks to healing.

Remember: your attitude is everything and will determine how quickly you heal!

Yours in Lyme Adventures,

TWL

 

 

 

Blog Quote Challenge #3

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Anne Frank is one of my favorite authors, so she is my #3 vote today!

Thank you to anaprose for nominating me for the Quote Challenge. Check out her blog here: https://anaprose.wordpress.com/

Below are the rules and my last three nominees for the week:

Thank the person who nominated you.

Select 1-3 quotes for 3 days to post on your blog.

Pick 3 bloggers to continue to love of quotes!

 

Drumroll please…..the last three nominees are:

The Prodigal Son

https://msnubutterflies.wordpress.com/

https://realwomanshealth.wordpress.com/

Have a great day where ever  you are!  And if you don’t like where you are, move.  You are not a tree!  🙂

 

Yours in Lyme Adventures,

TWL

Blog Quote Challenge #2

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I nominate the following bloggers to fulfill the 3 Day Quote Challenge:

https://prettyflyforawhitemom.wordpress.com/

https://shelbyslifewithlyme.wordpress.com/

https://readbetweenthelyme.com/

 

Don’t forget to:

Thank the person who nominated you.

Select 1-3 quotes for 3 days to post on your blog.

Pick 3 bloggers to continue to love of quotes!

 

Thanks to anaprose for nominating me for this challenge.  Check out her work! https://anaprose.wordpress.com/

Have a great day, everyone! xoxo

Yours in Lyme Adventures,

TWL

 

 

 

 

Pink Is For Everyone

As a Kindergarten teacher, my job and my students’ interests really made me aware of gender roles, biases, and stereotypes that children are blatantly and inadvertently exposed to from the minute they are born. I had boy scholars who liked pink and dressing up in a Dorothy/ Wizard of Oz dress in the house corner. And girl scholars who liked building with blocks and zooming cars in the car center.

 

We all fall victim to the pink/blue stereotype at one point or another in our lives. When we hear of an expectant mother, we get all giddy and bubbly, rushing out to buy pink clothes for girls, blue ones for boys. We decorate our kids’ rooms in sex-delineated colors or other gender conforming details like flowers or race cars or Disney princesses. It’s a big marketing scheme by Babies R Us and every other American family friendly company, because babies are naturally cuddly and lovely. Why wouldn’t we want all pastels and police cars to subliminally point out the ‘correct’ way to be a girtl or a boy, while our children are sleeping, living, and growing up in that bedroom?  But the question I pose is: why do we?

When I became pregnant, I purposely found out we were having a girl for several reasons. One, I really wanted to know right away. Two, we had a large extended family on both sides, and I just thought it would be easier for people to know what sex to buy for when making purchases. And three: it made it easier to decorate her bedroom. Which, by the way, we painted YELLOW… and did a farm theme. Not very girly, I know.

I am not a fancy Crate and Barrel “pink is for girls and blue is for boys” type of Mom. I’m more like a “pink and blue is for everyone” type of Mom. I’m the mom who tried early on to expose my daughter to all kinds of great things for both “boys” and “girls”. I didn’t want my daughter to be pegged as a “girl”, but rather as a person who accepts and enjoys all things, regardless if our society labels things for “boys” or “girls”. As far as I can see, it’s working. And I’m proud of that fact.

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Her favorite color is blue.

I sang Carole King and patriotic songs to my daughter as a baby. Her first book that she ever really loved on her own before she was even a year old was a Blues Clues book. She still loves the color blue to this day. We read books and sand songs every day. Stories like Big Blue Truck, Goodnight Moon, Peter Rabbit, and George and Martha were commonplace and enjoyed multiple times. As she got older, she loved the Greek Myths, and more recently, she enjoys Nancy Drew, Heidi Hecklebeck, and Judy Moody, and this summer, we are reading Harry Potter together.

As a toddler, she played with dinosaurs (given to us by her aunt who raised two boys) and blocks as well as baby dolls and all of their accessories. She still has a bazillion stuffed animals that she sleeps with at night, including her Layla and her taggy blanket , which she received in the early months of her life.

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A kitchen set I found at a tag sale. My daughter doesn’t want to part with this, even though she rarely plays with it anymore.

When she was in preschool, a co-worker of mine was getting rid of an old McDonald’s play stand, complete with an apron, a pretend headset, and food. She LOVED to dress up and take our orders, writing things down and fixing the trays of food. She played that game for years, and especially when family members came over! It was a joy to see her take control and transform into Diana or Melissa.  Her best friend at the time was a boy, and yet, she still enjoyed painting at the easel and dressing up in the house corner at school, which we typically think as “girl” activities. And her favorite television show at the time? Caillou, the one about the whiney bald boy who had to learn life lessons like sharing and being kind to friends. Yep. We sat through hours of that annoying show.

My husband would teach her “boy” things, like soccer and football. When she turned 8, we got her a basketball hoop that we put together after 4 hours of frustration. Her favorite outfits continue to be yoga pants and sneakers with a little sweat jacket for the winter and lined sport shorts and tank tops for the summer. She does like to get dolled up and have her nails done for special occasions or holidays, but she often sides with comfort instead of “looking pretty” for every day activities. I try to encourage wearing leggings and a cute skirt to school, or make requests to do her hair, longing for the days when she was younger and I could put her in cute little dresses and a hair clip, making her curls cascade on either side of her face. She refuses to be prettied up by me, adamant that a quick pony tail with not all the hair neatly combed in place is just fine. She is independent and confident in herself that she doesn’t need to showcase herself as ‘pretty’ every day to be happy. A clear defiant message both to me and the media, who finger point the way for women and girls to dress and make them selves up to look like Barbie dolls and not be comfortable in their own skin.

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Be gone, female stereotypes!

Her best friends are now girls, but even within the circle of her friends, she’s exposed to both ‘”boy” and “girl” themes. She takes dance and piano, but she also decided to play the saxophone at school this year, and she is the only girl in her grade level to do so. While many of her friends and even cousins were exposed to Star Wars years ago, she now LOVES it, and we are in the middle of planning an intergalactic 10th birthday party for her. It took a long time for my husband to convince her to watch it, since her favorite shows were and continue to be My Little Pony and Littlest Pet Shop, which are definitely geared towards a more feminine audience. To me, Star Wars seems like such a “boy” story, and yet, it has such universal themes for everyone. My own viewpoint about this classic story just shows how my own stereotypes have shaped my thinking, even though I try not to be stereotypical in what I expose my daughter to.  And I am glad that both my husband and I are giving her the best of both sexes in her development.

When we paint the stark canvas of “boy” and “girl” in front of our children to study and model from, they develop a very static mindset that closes them off to avenues of learning and enjoyment. One of her cousins was asking me the other day about birthday gift ideas my daughter. I told her Barbie furniture for the doll house she created out of a bookshelf in her room and Pokémon cards. “Wow! Such a variety!” she texted.13515302_10206797330707217_711877003_n

Yes, and I wouldn’t want it any other way.

How do you teach your children to be a part of both sexes?

Yours in Lyme Adventures,

TWL

 

 

 

3 Quote Challenge

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I love this quote!  It’s smart and fresh and gets right to the point: you need to shape your own destiny.

Thank you to anaprose for nominating me for the quote challenge.  Below is the link to her blog.  Check it out!

https://anaprose.wordpress.com/2016/06/22/quote-what-is-my-purpose/

The Rules of the Quote Challenge

Thank the person that nominated you

 Post 1 -3 quotes a day for three days.

Nominate 3 bloggers each day

And winners today are:

Lime Light Lady:  https://lymelightlady.com/

The Person Next To You: https://thepersonnexttoyou.wordpress.com/

The Undiagnosed Warrior: https://undiagnosedwarrior.wordpress.com/

 

Happy Sunday! xoxo

Yours in Lyme Adventures,

TWL

Full As A Tick

I never heard this expression before, and it wasn’t until I researched phrases with the word ‘tick’ in it that I came across this clever idiom.

Sadly, it takes different foods for me to be full as a tick now. I really miss baking and eating my favorite dessert of cookies and milk.imgres-3 Diving into a bowl of my husband’s homemade sauce on pasta with buttery garlic bread on the side can’t happen at my place setting anymore. Potato chips with my special sour cream and onion dip is a snack that I have to pass by. Summer corn on the cob and shrimp cocktail with another homemade sauce recipe are now distant culinary memories. And no more summer desserts like s’mores or ice cream. Pancakes or waffles with syrup–out. Toast with jelly and butter–gone.

Eggplant.

Tomatoes.

Potatoes.

Cheese.

All gone from my diet and my taste buds.

And forget about wine or mixed drinks. Those delicious refreshments would clearly turn me into a stinging human, capable of electrifying any number of appliances in my home. And that something I do not wish to do with my time right now.

imagesNow, it is kale, protein, green tea and water that make me full as a tick. Today, I realized that eggs need to be taken off my menu, too.

Sigh.

Well, that makes more room for more of those good-for-you greens in my diet, right?

What makes you full as a tick?

Yours in Lyme Adventures,

TWL

Baby Steps Towards Healing

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It’s been six months since I started down my Lyme journey, and I’ve learned so many different ways to manage my symptoms and my health. My experience reminds me of when my daughter first learned how to walk: one foot in front of the other, slowly bobbing and weaving forward, trying to get ahead without falling.

I can remember standing at my back door this past Winter, looking at the snow piled up over my garden. It broke my heart to think that I wouldn’t be working in it the following Spring. Thankfully, I proved myself wrong. But it wasn’t without taking little baby steps every day-even when I wasn’t feeling like doing anything but laying down.20160619_093838_resized

Once the warmer weather hits, I like to wake up each morning and check out my garden. I like to see where the sun is hitting, noting which perennials are coming back to life and which ones should be moved so they get the most sun. Sometimes, I photograph my flowers, and I mentally note the progress others. On Friday, I worked at edging my garden for over an hour, without stopping to rest. I can remember when, back in the winter, I tried vacuuming a 5×7 carpet in my house for a few minutes. That minute task sent me to the couch for a few hours! So being in my garden for a good length of time, with a laborious task at hand, was not only a huge improvement, but also a sign to me that I am on the right track towards healing.

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It’s not been an easy process, being that I’ve had to seek out other natural practitioners for help. It is a costly part of my healing, since none of my practitioners take my insurance. But I’ve gotten better advice, support, and more importantly, better health over time, than what I received from my insurance-covered medical doctors that I sought out early on. My small gains in health have been worth every check I’ve had to write out these past few months.  Each month has led me down a different path to healing, one which I wouldn’t have ever encountered if I hadn’t gotten Lyme.

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I was out of work for 5 months, and thankfully, I had enough sick time accumulated that I was able get paid. I went back to visit my students and colleagues on the last day of school a week ago. It was so good to see everyone, and I burst into tears when I hugged my principal.

My kids’ reactions were priceless. Some hugged me, others were noticeably more excited and talkative with me, and one little boy just kept giving my side glances with a “Why are you here?” look on his face. It made me laugh inside, but it also made me realize my kids weren’t “my kids” anymore. They had changed so much since when I left because they had a different teacher in my place for so long. Little things that I taught them, like our snack song before eating, or reciting a chant for getting lined up calmly and quietly, seemed to have been forgotten.  They were one of the best classes of my career, and I sadly had to pass the reigns to a sub this year. It was a hard decision, but one that I had to follow through on if I wanted to get healthier.

Even though I have much more energy, I know that I am still healing and have more healing to do. I must keep on top of my food, fluid, and supplement intake every day to continue feeling better. I still have brain fog and need to write down even the smallest of items to remember or most mundane of tasks to complete. You can’t ask me where something is and expect a quick search and rescue response like in my pre-Lyme days. I am still limited in what I can eat, and it hampers going out to restaurants or when we entertain at home. We had company here last night and my husband made a dozen pizzas in our pizza oven while I ate my kale, broccoli, sausage, and garlic meal. I miss eating my favorite foods, but it is a small price to pay when I know other Lyme victims are hospitalized, suicidal, or even dead.

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I am thankful that I am out and about, and not standing in my doorway, eyeing my garden and wishing to be out there, pruning and weeding.

Even if it has meant, and continues to mean, taking baby steps to get there.

 

 

Unconventional Treatments Challenge Your Medical Care And Thought Processes

 

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I grew the second eldest of five children in a middle class home. I wasn’t a sickly child, and my parents made sure I ate right and went to the doctor’s when I needed to for appointments, or if I became ill.

As a teenager, I got a job working in a health food store. I wasn’t really a big health food nut, but I liked the atmosphere of the store, my boss and the people that worked there were wonderful to me, and I did purchase some of the products. I loved the Martinelli’s apple juice, it’s golden nectar housed in glass apple-shaped bottles. I’d purchase Xylitol gum, carob coated goodies, or nuts to chomp on. Some of the product names like Kiss My face and Nature’s Way enticed me , but I never really purchased personal products. There were many regular costumers who would buy all sorts of vitamins and organic food products at that store, and the owner and many of the employees had specific expertise well beyond my sixteen years.

The worst medical issue I ran into as an adult was developing gestational diabetes with the pregnancy of my daughter, and even that was managed with insulin and then pills afterwards.

This past December, however, my life and health took a spiral downward when I developed severe joint and muscle pain and was treated for Lyme for one month with Doxycycline.

I initiated numerous doctors’ visits with specialized doctors–a rheumatologist, a neurologist, and two infectious disease doctors–because I wasn’t happy with the minimal level of my improvement with each passing week. Each doctor gave me a different diagnosis ranging from “It’s Fibromyalgia. Take this Lyrica.” to “You just have to wait and see.” to “We don’t know what is causing your symptoms. Just eat right and exercise.” My insurance was paying for these vague or totally off-base diagnoses. Frustrated, I’d basically hit a plateau, and I wasn’t back to normal. I was out of work, tired, and in pain. And yet no one in the mainstream medical community seemed to really want to help me. If their hands were tied, they weren’t telling me. I was left scratching my head and searching for answers elsewhere.images

In March, I’d found a naturopath and a dietician who really assisted me more than the prescribed antibiotic treatment, and yet, I was still experiencing fatigue and pain that was directly influenced by what I consumed. It wasn’t enough for me to just have some good days and some bad days. Prior to this happening, I had a strong teaching career with an active family life. All that changed with Lyme, and I was merely a shell of who I used to be within a matter of weeks. I wanted to get back to my normal, active self. And yet, even with the supportive help of my naturopath and dietician,it seemed like such a far reach to get there.

In my graduate school days, we learned about synchronicities in life. The idea that ‘things happen for a reason’ and the experiences you have that seem like coincidence all lead you down a path that you may never have expected or planned. Call it fate, God Winks, signs, whatever. I’ve experienced many of these synchronicities since my Lyme adventure began in December, leading me to new ways of thinking about my health and medical care.

My most recent new learning has come from a place called Holistic Wellness Alternatives in Yorktown Heights, New York.

I was led to this place by my husband and a chance conversation with a recent acquaintance.  He was speaking this man about my recent issues with Lyme. This man in turn shared about his friend’s success as a client of Holistic Wellness. This particular cancer survivor experienced wonderful results from Dan Court, the owner and practitioner, so I called and made an appointment.

After speaking with the client liaison who had been misdiagnosed Lyme for four years and now WORKS at the place, I figured with yet another coincidence, it’d be worth a try.  But it wasn’t without its glitches; they rescheduled 3 times!  Dan had injured his ankle and his orthopedic had very limited hours.  By the third phone call, I was feeling a little desperate to get there and experience some of his all natural magic. At least the last call was just to make the time later on my scheduled day.

The office is an hour and a half away from my home in Connecticut. I drove down the Merritt Parkway all the way and almost had a panic attack when I saw the sign for the Tappan Zee bridge!  I hate going over bridges if I am driving. Thankfully, my faithful companion, my GPS, directed me to get off the exit before the bridge.  While my appointment was scheduled for 1 1/2 hours, Dan spent 2 1/2 hours with me. It was a pretty unique and eye-opening experience.

I had completed several forms for the appointment that were analyzed by a computer, and we spoke for at least an hour about my issues, the practice, and Western Medicine versus Indian and Chinese medicine. Based on my paperwork, I was having issues with my sugar handling (no surprise there!), my endocrine system and my liver. After discussing my test results, he performed a muscle test, which is based on Chinese medicine. It is designed to test the energy levels in the body to see the strength and weaknesses of the organs.  Dan also uses muscle testing to determine what compounds are useful or not useful to the body. It was  very unconventional in comparison to what I am used to experiencing at the doctors who practice “Western Medicine”.  I wouldn’t have believed what was happening if I hadn’t experienced it myself!

To start the test, I lay down on a table and lifted my right arm, pressing it gently against his left arm. He was pressing and tapping against the muscle of my extended arm, and with his right hand, he was pressing against my organs.  If my arm went down, it meant the organ was weak, if it stayed up, the organ was strong.  When he got to my stomach, he said, “OH!!” as my arm went down.  It was so freaky! ( I had told him earlier that my stomach seemed to be the only organ I wasn’t having trouble with…I guess I was wrong!)

He then put little vials of different compounds, minerals, and toxins on my stomach to test my body’s reaction.  Again, with different bottles, my body reacted and my arm would either stay stiff or fall down. With a particular one, Actonex, I could actually feel my stomach muscles getting tighter with the vial resting there on my stomach.  It was so wild! And my stomach still remained tight several minutes afterwards.

So, after 2 1/2 hours, I walked out of there with three additional supplements to try for my issues with sugar, endocrine system, and liver, and another appointment scheduled for June.

It will be very interesting to see what happens at the next appointment. And I’m looking forward to it.

Maybe I’ll learn something new that continues to challenge my thoughts about medicine and holistic care.

And maybe I’ll be closer to healing.

Yours in Lyme Adventures,

TWL

 

 

 

 

 

 

5 Ways To Be The Best Lyme Warrior You Can Be

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1. Documentation Is Your Saving Grace

When I first became ill, before even seeing anyone who really helped me, I started what I now jokingly call “My Lime Bible”.  It’s a green binder (I want to get a Lyme and tick photo to slip into the clear, plastic front cover….) that is sectioned off with pocket files, one for each doctor, specialist, dietician, or practitioner. I have a separate pocket for blood work results. I also have a pocket with general information about my health prior to my illness as well as monthly changes, positive or negative.

Additionally, I created a table in Word where I record daily my food and liquid intake, with measured amounts, as well as any reactions I had. I note exercise and daily supplements and amounts as well. I make hard copies of this to bring to appointments as needed. Sometimes this information changes, so it is important to note what date supplements were added or stopped as well as reactions that occurred.

I take a loose leaf notebook with me to every appointment, and put all my notes in the corresponding pocket. It’s impossible to remember every thing, so this is a quick way to help me and gives me a system to check back if I need to.

I keep a post it note with the name, address, and phone number of the specialist on the front of each pocket for easy reference as well. This was especially helpful for me when I had to go see a neurologist and was having difficulty reaching the office over the phone with the number they gave me. When they called me on a different line, I jotted that number down as well.

Little things like this help streamline my treatment and make it easier to share my complex history with new practitioners.

2. Know And Listen To Your Body

When you are struck with a chronic illness, your body has amazing ways to tell you when something is or isn’t good for you. Learn to listen to your body and respond. Back to back activities for me right now is a recipe for disaster, so I have learned to really pace what extra activities I can do.  I’ve come to realize my health is more imporant right now than being sure that I attend every family get togther.

If you feel tired, say not to family and friends.

Even if you anticipate being tired, say no to friends and family.

Leave from events early if you need to.

Eat and drink what and when you should to avoid getting more tired than necessary.

Get at least 8 hours of sleep a night; 10 hours is best.

3. Brain Fog Strategies

I was so distressed early on when I realized that my brain wasn’t functioning like normal. I was used to having a ‘ticker tape’ running in my head of things I needed to accomplish each day, especially on the weekends. Now, I realize that is just not a good option for me anymore.

Instead, I use little strategies to help me remember things:

Stay in one area of the house to complete a task before leaving the room. Many a lunch was left unfinished before I started doing this!

Use post-it notes for reminders like : switch the laundry or empty the dishwasher. Display them in a prominent place where they will likely be seen.

Tape invitations next to the calendar as well as write the information down on the corresponding date.

If your store offers this service, order groceries on-line and  have them delivered or picked up when scheduled. This both a time and energy saver for me. The store I use also saves my favorites and my last order, so I always go to those sections of the website first to see what I need before adding new items.  This helps me remember to order staples like milk or eggs, which I may have in my head to do, but oftentimes, I’ll forget, because I get sidetracked looking up other items.

Write due dates for  library books right on the calendar.

Focus and tackle one small cleaning job at a time if you feel up to it.  Starting two or three is too taxing on the memory and the body.

4. Food Can Be Your Best Friend Or Your Worst Enemy

Remember my Lyme Bible? Over time, I was able to see what foods caused what reactions in my body. It was so disheartening to me to find out that I was having issues with almost every part of the food pyramid: dairy, carbohydrates, fruits, nuts, and nightshade vegetables. But I’d never know this if I didn’t keep a food journal on the advice of my naturopath and dietician.

Just as an example, I was drinking lemon water for the longest time, thinking that it was a healthy way to detox my body. One day it dawned on me that lemon was a fruit, and that was probably why I was experiencing a light stinging sensation over my whole body! Sure enough, once I just switched to regular water, the stinging subsided. I felt even better once I started adding green tea into my diet.

Becoming a label reader was really important for me. I read many posts about Lyme warriors eating gluten-free processed products because they are staying away from wheat, and I cringe inside. Gluten-free doesn’t mean sugar-free. In fact, if you start to read and compare labels, you will see that many gluten-free products have just as much sugar as regular wheat produced products! You are just feeding your little Lyme friends by eating gluten-free processed food products like breads, cereals, and crackers.

A few guidelines that have helped me:

Stick to eating whole foods, not packaged or processed foods.

Cook in olive oil.

Drink only water or tea that you brew.   I drink 40 oz of water and/or green tea per meal, and another 10-16 oz in between meals to total close to 100 oz or more of fluids a day. The green tea seems to help me greatly with inflammation.

Eat at least 4 – 6 oz of protein for each large meal to help sustain cravings and maintain energy levels. I typically eat 5-8 oz of protein.

Use supplements that are made out of whole foods and not synthetic compounds. Talk to an experienced holistic practitioner or naturopath about the important difference between the two.

 

5. Reach out and Touch Somebody’s Hand

The best information I received about how to heal wasn’t from anyone with an MD after his or her name, it was from people who went through Lyme, are going through it, or know someone with Lyme. Also, natural practitioners and a dietician helped me greatly. Don’t try to re-invent the wheel. There is so much information out there, you need to work smarter, not harder, when you have Lyme.

Ask friends and family whom they recommend for a naturopath, holistic practitioner, dietician, or LLMD.

Research all natural cleaning products, shampoos, and body cleansers, toothpastes, etc.  to find ways to limit more outside toxins entering into your body.    Some companies will send you free samples to try if you ask! Dr. Bronner’s sent me free many free samples of their products, and I’ve discovered what compounds from their line my skin can tolerate as well as which ones aren’t safe for me.

Keep in touch with family, friends, and co-workers either on the phone or by email. These little connections can help you to keep a positive attitude even on a bad day.

Send cards to friends and family via snail mail.  It’s nice to receive letters from people, and it’s equally as nice to send them out, too!

 

And never stop learning. Your health depends on it.

To Post or Not to Post?

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It’s very easy these days to connect with people on social media.

The Founding Fathers could never have anticipated the global expanse of technology, catapulting the ideal and exercise of freedom of speech into the hands and minds of millions upon millions of people across the globe every day. And yet, they would also appreciate how one word, one sentence can spark love or outrage over any given situation.

Look at the death Muhammad Ali. He was a global figure, larger than any boxing ring he ever competed in, and the love for him followed him until his death. His religious views and penchant for metaphors both alienated and drew people to him. Newspaper accounts, Twitter accounts, and Facebook pages were ablaze with his image and famous quotes when he passed. Articles were written and shared. And past interviews were also viewable online. It’s an amazing time we live in, where we can live and relive history all at the same time, in a moment’s notice.

Look at Bill Cosby. Revered by millions, now his whole life’s work has been cut to shreds because of allegations of rape over 30 women.  My whole perception of him has changed from a smart, funny and progressive thinker to a manipulative predator. I enjoyed his comedy and grew up watching the Cosby Show. But now, after watching interviews and investigative reporting shows, and reading news articles from former colleagues of his, I see a different side of him that he didn’t project to the masses or even to those closest to him. He showed this private side only to his victims behind closed doors, where he felt protected and in control in the most evil of ways. I feel for his victims, living with the harshest of sentences before he was ever even brought to justice.

And the latest in the news: Brock Turner, his father’s letter to the judge and the victim’s response. Social media has allowed people the freedom of expression, but it also has opened the door to being held accountable for that freedom of speech. In the Turner case, his father wanted to protect his son from a “20 minutes of action”. Guess what, Dad? What your son did to that woman was called rape, not “20 minutes of action”,  as you so ignorantly stated. Put yourself in her parents’ place. What if it was YOUR DAUGHTER that was violated? What would you expect the law to do to protect her rights? Her life? Her future? Better yet, what if your SON was raped? Rape happens to men and women, but you probably didn’t know that.

The victim’s eloquent, tragic, and intelligent response to his letter and his son’s own testimony will go down in rape advocacy circles as a brilliant document worthy of court case precedent. Brock Turner’s victim has more grace, sensibility and intelligence than his father or the judge in this case. And we as media voyeurs can see clearly how each person in this case has been effected by the actions of Brock, the judge, the father and the victim. We have front row seats to the judicial system and how the warped thinking of male versus female social stereotypes interplays with court decisions for felony crimes against women.

Brock’s victim gave us a crystal clear picture of what she went through during her whole experience from the time of the assault to how her life was dramatically changed a year afterwards. Her words were poignant, revealing, heart wrenching and honest. Her letter was so disturbing to me both as a mother, a teacher, and a woman. She was the victim, and yet she still had to advocate for her own safety and well being, even after the assault and trial had taken place. She will continue to have to advocate for herself for the rest of her life. And that is the most tragic part of this whole awful “20 minutes of action”.

I hope Brock lives with the shame and guilt of his actions. And I hope Brock’s father reconsiders supporting his son’s inexcusable “20 minutes of action” against an incapacitated woman.

To post or not to post? If you goal is to educate and inform, post. If your goal is to protect your child from facing consequences, I’d highly reconsider.

image from Google images