Revelations

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This past year has been one full of revelations for me.

My health took a turn for the worse, thanks to an unseen tick bite, causing me to be out of work for six months. I was forced to seek answers from both the medical and naturopathic communities.  I found more help in the natural solutions than in the man-made chemical ones.  It was not a very easy road to go down, but one that continues to surprise me and show me that Mother Nature really should be consulted more often!

Easter Sunday, with all its culinary delights, came at me full force this past Sunday. One of the major issues with my Lyme is my compromised diet. I decided to not worry about possible pain and stinging that I would undoubtedly feel after eating dinner, and just eat small amounts of the foods that I haven’t been able to eat for the past 15 months.

Surprise! Surprise! It was revealed unto me that I could eat with no pain!

I ate stuffed shells—with both cheese and meat. No stinging! (The cheese bothered my stomach a bit, but I was thankful that was all that bothered me.)

I ate some green beans—no stinging!

I ate some mashed potatoes—no stinging!

I ate porketta and ham with horseradish—no stinging!

And then…I tried….dessert.

I ate a sliver of chocolate cream pie with homemade whipped cream, two anginettes, and two of my own biscotti. Hey, if I was going to cheat, and if anything would bother me, I’d rather it be the dessert!

I was so thankful that none of this bothered my system. None.of.it.

I did notice that my knees and elbows had pain later on that night…like really late, like 2 am late…but wow! Oh Wow! If that was all I was feeling, was I ever thankful!!

That’s not to say that I’m going to start eating all carb-laden foods again. I clearly still have the Lyme bugs in my system, but the fact that I could eat so many different foods without that nasty stinging side effect within a half hour of eating really made me thankful.

And hopeful.

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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

 

 

 

 

 

 

Playful

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I used to be playful.

The kid would kick me, throw me, toss me in the air.

Laughing when she’d catch me.

Chase me when she’d miss me.

Slamming me on the concrete, the pain would echo outwards.

Unheard.

Kicked between two people, always moving,

Spinning.

Rolling.

Spiraling towards another impact.

Hitting rocks and trees, rolling over plants amid nervous female cries,

“Watch out for my garden!”

Landing in trees, shaken free and crashing to the ground

To be subject

to the

Same

Harsh

Treatment.

Slowly, I lost my air.

And my playfulness.

Now, I just sit in the grass,

Collecting spider webs and leaves.

Rained and snowed on,

Forgotten in this game called

Life.

Losing With Lyme Makes You A Winner!

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I grew up and still live in Connecticut, where Lyme disease was first discovered in 1975. I just recently heard through a cousin about a connection between lab experiments at the Plum Island Animal Disease Center in New York and Lyme, Connecticut. Smaranda Dumitru writes about the possible connection and the medical community’s attentively blind eye approach to this rampant disease, on the State University of New York at New Paltz’s website, Tick Talk.

Whether you believe in the Plum Island/Lyme disease connection or not, according to the CDC, over 300,000 people are diagnosed each year.

Even though I had heard of Lyme, Connecticut, and I had heard of Lyme disease, I was completely ignorant of what it can do to the human body until I contracted it.

Having Lyme disease has opened up my life to so many new discoveries about myself. One of the greatest discoveries is unlike that awful meal at your favorite restaurant or your idiotic ex-boyfriend, Lyme disease is a lasting, every changing relationship that never gives up on you!

It’s not all that dreadful–you really can benefit from having Lyme disease. Below are some of the positive losses that you can experience living with Lyme.

Hair loss

You can save a lot of money on hair coloring, cuts and shampoo.

Memory loss

Now, you really have an excuse for not sending in your child’s field trip money or why you didn’t reply to that birthday invitation!

Energy loss

Now, your spouse or partner can do all those mundane and annoying jobs like wash the windows and empty the cat box.

Job Loss

Yay! All your dreams about not dealing with unrealistic demands and crazy coworkers have come true!

Weight Loss

You can’t eat your favorite foods, but you sure look good in those jeans that used to be too tight!

 

Some other benefits of Lyme disease are you always get complimented on how well you look, even if you feel awful.

You have a bon-fide reason now to stay at home in your jammies and be lazy on the couch.

imagesYou turn into a little detective, honing your research skills to find new treatments, new doctors, new protocols, and new recipes to try.

You reach out to complete strangers for answers and information, willing to try even the most obscure of methods to ease your symptoms. And some of these strangers become new friends.

You really get to know your body and how it reacts to different compounds and foods.

And you find healthier ways to keep on living.

Yours in Lyme Adventures,

TWL

 

http://www.cdc.gov/lyme/stats/humancases.html

https://sites.newpaltz.edu/ticktalk/social-attitudes/story-by-smaranda-dumitru/

 

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Generosity

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Dedicated to my family

I’ve been noticing little glimmers of love and generosity since Lyme has become my best friend and worst enemy. It’s hard to keep a positive outlook at times when you notice new symptoms cropping up, a reminder of how clever and persistent Lyme disease can be. But finding generosity in my life is one of the ways I use to keep myself from going down that dark rabbit hole and never coming back up to feel the sun.

I recently received free samples of soap from two different companies. One is Dr. Bronner’s, and the other is a local company here in Connecticut called Soap What. I had sent out emails asking for coupons so I could try their products, and they quickly responded to me with free samples! I’ve been keeping a loose “soap study” on the different soaps to see how my body reacts. So far, the peppermint Dr. Bronner’s leaves me feeling tingly, but the mild baby one, their shaving soap, and the lavender bar seem to agree with me. I put the bar of Citrus and Herb from Soap What in my bathroom. It smells really nice and doesn’t seem to bother my hands when I wash with it. I’ll continue on with my little study and hopefully find some more positive results and options.

I’ve received so many cards, gifts, and gift cards from co-workers and family. My daughter made me a cute card the other day that I put by my bedside. And I also received two letters from former students last week that brought a smile to my face and made me chuckle. I enjoy these little mementos. They remind me that I need to continue to spread these little joys with others. Taking the time to send little cards and notes to family and friends is a small action that can really lift one’s spirits.

My family and extended family, on both sides, have been very supportive, always asking how I am doing, even though I “look good”.  And that’s the paradox with Lyme. You look good, but inside, you can and often feel lousy. Eating for me is a chore and not a joy anymore, since I am so limited to what my body can handle. Family events can be challenging on my system, but life goes on. I don’t want to be sitting on the bench if I can be out their playing, even if it’s not a home run inning for me at every game.

We had some family here the other night for a little get together. (My husband is the youngest of ten children from an Italian family, so even just a few of his siblings here makes for a big party!) One of his sisters brought a dairy and sugar free dessert for me to try. When we went to her house the next day, she had purchased a special kind of rice chip for me as well. I really appreciated those little gestures. It just affirmed to me that people are thinking of me and are generous with their time in their own way.

When an extended family member was leaving that picnic, she expressed some encouraging and supportive words to me, handing me a Mother Mary stone from Lourdes she dug out of her purse. She told me to rub it and say a little prayer to Mother Mary to help me. I did as I was told, even though I am not officially Catholic. (I think I may go get one of those stones to keep with me. It may just be one of those generous links that will help get me well.)

It’s these little twinkles of love that occur that signal to me of the importance of family connections. I speak with one of my aunts quite regularly, either on the phone or through our Scrabble games on the computer. We check in with each other about our lives and share so many laughs that my stomach hurts. One of my sisters has been sending recipes for me to try, and I keep in touch with other family members via email as well.  My niece and I had a lengthy conversation recently about LUSH, a company that makes all natural makeup, skin, and hair products.  We’re going to take a trip to the mall soon as she is a LUSH expert!  My mother visited a few weeks ago with plants for my garden, and when I visit my parents, they always want to feed me, making sure to ask and prepare  foods I can eat. And my husband has been a great support through all of this. From taking over cooking and cleaning, to buying extra meat for my meals, to checking in each day to find out if I need anything , to just giving a hug or kiss, he’s always there for me and with me when whether I’m having a good day or a more tired one.

It’s the little moments of generosity that make living with a chronic illness a bit more bearable.

Yours in Lyme Adventures,

TWL

 

 

 

 

 

Learning

 

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This winter and spring have been full of learning about myself when I was expecting to keep on living my life as usual.

Hit with a chronic illness, I had to learn to let things go from time to time, like housekeeping and yard work, as truly, they tasks will always get done. The only “house police officer” that is checking in on the status of my laundry, or if my windows have been cleaned, is the one inside my head. And he or she needs to learn to take a break!

The Western medicine medical community has given me very little to rely on to get well, so I’ve reached out to friends and family, even strangers, for advice and guidance. I’ve tried some unconventional methods that don’t align with what I’ve come to learn as mainstream medical treatment over the years and yet, these ways are small, important steps to healing my sickly cells.

I’ve learned how to advocate for myself, and I still have messages to share with the various doctors who have misdiagnosed me through their narrow lenses.

I’m out of work right now, so I’m learning how to fill my days with reading and writing. My colleagues and principal have been so supportive and caring. It’s made my transition to being home more tolerable and less guilt-ridden.

I’m learning about my body and what it needs to function in a tolerable way. I’ve changed my diet, and I’m learning to eat different foods that I’d never eaten before being afflicted with a chronic illness.

I’m still learning how much activity is too much. I need to learn to say no and how to gauge my energy levels against upcoming events.

I’m learning about Lyme and symptoms and supplements and nutrition.

 

I’m learning about me.

 

Isn’t that enough?

 

Phase

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My days phase in and out. I’m much stronger now than I was back in the winter, thankfully, but I still have my weaker moments. I remember looking out at my perennial garden back in the winter, sadly thinking I wouldn’t be able to work in it this spring. Happily, I am able to move around and get out there, set up the sprinkler to water, and observe the daily changes of my plants as they come back to life. Some of my purple irises that I transplanted last year have started to open. They are tall and regal, their dark petals dainty and full. It’s a beautiful sight to see, and yet they remind me of those not so far away thoughts from a few months ago.

The worst time of day for me is at night, when the cravings for something crunchy and sweet hit me. Advertisers know their consumers, and I am their best target! Their ads spring up on my television screen, teasing me with foods that I crave but simply should not eat.  My stomach gurgles longingly at the sight of Dairy Queen ice cream or Lays potato chips. I pine away for the day when I can actually eat something so good, but yet, so bad for me, again.

Instead of working for my students, I am working for Lyme. I read books and food labels, go to doctor and holistic practice appointments, try to eat healthier than I’ve ever done before, take multiple supplements over the course of the day, and write about my experiences. I make batches of kale, romaine, and spinach for my salads that I eat at lunch and dinner. I eat eggs and other meats for all of my meals. And I drink water. Lots of water–like 100 ounces a day of water. I’m surprised I haven’t floated away yet.

My latest phase in my ‘get healthy’ regime is to slowly change out many of the toxin-filled products in our home that I use to “greener” ones: toothpaste, hand and body soap, shampoo, facial cleansers and house cleansers, make up, and laundry detergent. It’s another way to try to get healthy and lessen the toxic load on my system, but who really knows if it will help. And yet, nothing beats a failure but a try, right?

Every night, I go to sleep and each morning I wake up, thinking that this may be my way of life for me forever. Even with my latest trip to a new holistic practitioner, my body may be beyond repair, and I will have to live with the joint and muscle pain when I eat anything with carbohydrates.

I can only take each day one at a time, and anticipate that this too shall pass. Much like the irises in my garden, I hope my future will yield a different phase, one which will include my new healthy habits, as well as some of my old yummy ones, too.

Yours in Lyme Adventures,

TWL

 

 

 

 

Research

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Dedicated to Michelle Armstrong, Shelton, CT

When I was in college, I became enthralled with a computer game called Tetris, thanks to my roommate Michelle. The object of the game is to create rows of lines using geometric square and rectangular shapes. A four-line group is called a Tetris, and the computer would start slowly dropping pieces from the top of the screen and increase speed until the pieces were flying down, the player frantically trying to place them correctly to make lines. I recently found another version online, and I am once again obsessed with the game. Only in this version, you are playing against another person, and each time you complete a line, it sends another line to your opponent. You still need to clear lines and try to beat the other player in a 2-minute time frame, but it moves more quickly since your opponent can easily send over more lines than you are ready to handle if they are really good at placing their pieces before you.

This game requires you to be able use what you have as well as think ahead, much like addressing a pressing problem. Right now, my problem is Lyme disease, and it’s a tougher puzzle to figure out than a Tetris game.

In my research about Lyme, I’ve come across different books. My go-to book right now is The Top 10 Lyme Disease Treatments by Bryan Rosner. The 11-chapter book is clearly written and has sections about antibiotics, detoxification, and detailed information about supportive supplements. What I really love about this book is that it gives a holistic approach to treating this disease. Rosner has a detailed portion as well about how there are two very different views in the medical community about how to treat Lyme. He advocates for being knowledgeable about Lyme and to use all available resources, both traditional and non-traditional. Relying on one particular therapy will not help treat or cure your condition, since Lyme is a multi-faceted disease that mutates and has co-infections attached as well. He does state that it is crucial to find the right combination of therapies and also realize that time plays an important role in healing.

I’m also reading Terry Wahls book, The Wahls Protocol. She reversed her debilitating MS symptoms through diet, after researching cellular growth and health. And what a diet she has! It’s all healthy fruits and vegetables, and you need to eat 9 cups a day each of sulfur rich vegetables, leafy greens, and colorful fruits. Not an easy task! The most of the leafy greens I can do a day is 4 cups. My body can’t handle any fruits right now, as much as I’d love some grapes or pineapple, or even an apple, which is not my favorite fruit!  She does advise building up to the 9 cups, however slowly you need to do it, but she urges to just start eating the right foods now to rebuild your sickly cells.

One of my favorite mantras that I gleaned from my graduate work is, “Work smarter, not harder”. And I’ve tried to put this into practice whenever I can, especially with my Lyme issues. A few months back on a more healthy day, I had visited the bookstore and was astounded at all of the gluten-free, vegan, and paleo cookbooks out there! But I refused to buy even one cookbook as my food sensitivities made it hard to actually use any of the books I’d seen. I’d made that mistake early on, buying a smoothie cookbook, only to find out after a big swing of a healthy yogurt and strawberry smoothie, my body couldn’t tolerate the fruit or the dairy. Live and learn.

So, I hit my library instead. After first searching the internet for book titles, I’d then go and peruse the stacks, leaving with about 10 or so cookbooks, thinking that maybe one of the books would be helpful in finding some recipes that my body could tolerate. Many cookbooks later, I was able to photocopy 10 or so recipes. There are just so many foods that my system is sensitive to right now. Sugar free recipes include sweeteners like honey or maple syrup. Gluten free ones include flours made out of almonds or rice, which I can’t tolerate. But I haven’t given up yet. I’ve got two more books on hold at two different libraries–one called Recipes for Repair and another Breaking the Vicious Cycle–that I am hoping will be returned soon. It seems like I’m not the only one with food struggles!20160413_103853

My Lyme adventure is just like a Tetris game: some of the pieces fit, and some don’t. There are gaps in my healing that need to be filled. I keep hitting a wall, but someday, I’m hopeful be able to clear out the lines with the right combination of building blocks.

I’ve already had some success when I started with my naturopath and my dietician back in March, and I just recently went to another holistic practice. The owner who runs it has given me some extra supplements to try. He has helped other people with Lyme, as well as a particular client with very similar issues to mine, so that gives me confidence that I am on the right track.

I am anticipating even more positive results with the start of this new regime of mine. And with the inclusion of more books, of course! I just have to keep finding the right ones to help with my personal Tetris puzzle!

Yours in Lyme Adventures,

TWL