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 I still can remember all the difficulties I faced as my Lyme progressed from annoying symptoms to full-blown pain, brain fog, dietary issues, weakness, and exhaustion, and finally, being out of work for six months.
I can remember early on, trying to keep a semblance of routine at home and make my daughter’s lunch for school. That 10-minute job caused me extreme exhaustion, and a return trip to bed for two hours.
I remember trying to exercise on the advice of medical doctors, which never went well. Later on in that winter, I tried vacuuming a 5×7 rug. I needed a three-hour nap after that.
I remember starting what I call my Lyme Bible. It contained sections with each doctors’ contact information, copies of my blood work reports, diagnoses, as well as my food diary and symptoms tracker.
I remember my husband asking me one morning, “Where is the jelly?” And I literally did not know. I couldn’t tell him, and I got upset because I knew my brain was literally fading a way bit by bit, and there wasn’t anything that any medical doctor was telling me that was helpful or hopeful.
I remember being frustrated listening to people with MD after their names giving me any number of diagnoses: Lyme, not Lyme, fibromyalgia, coxsackie, EBV, a virus…and even, “Yes, you have Lyme, coxsackie, and EBV in your blood work, but we don’t know what is causing your symptoms. Just eat right and exercise.” I’ve got letters that I’ve started that I intend to send to all these medical professionals to both ease my conscience and anger, but also potentially change how they actually address a patient’s course of treatment when they have Lyme disease.
I remember hearing about a holistic practitioner that helped a cancer patient who had tremendous results after major health issues. At that point, I was ready to find a new avenue that didn’t lead me to another medical doctor whose hands were tied against me.
I remember thinking during my first appointment, his methods seemed so strange and out of the box in terms of medical treatment as I knew it, and yet, after only 4 months, I was back at work full-time and able to conquer my full teaching day without turning into a puddle by 10:30 am!
I remember feeling so tired from work, I was in bed by 5:30, and still not rested to face the next day. Squeezing the shampoo bottle in the shower bothered my right thumb, and drying my hair with the hair dryer made my elbows hurt tremendously. Even driving would bother my elbows. And reading…forget it. After ten minutes, I could feel my mind drifting away from the words on the page.
I remember a time last year when I didn’t put the my prized under-the-counter radio on when I was in the kitchen. It’s presence changed from a comfort to just noise. The feeling of wanting music on had left me, and it didn’t bother me for many months that I didn’t put the radio on to keep me company.
Tonight, I connected my Bluetooth Pandora on my phone to that radio. I listened to a Martina McBride holiday channel, and I sang along to almost every song. It was like a drug to me; I realized how much I had missed my music and I finally had the chance to enjoy it again. I had to force myself to turn it off and go sit down when tiredness of the day trumped the music.
As I am writing this, I am thinking of how fortunate I am that my health has returned almost to normal and I am enjoying things that I couldn’t do a year ago.
It was a clammy, overcast summer morning, late in July. The kind of morning when you go outside and you instantly feel the moisture on your skin and want to hibernate in the air conditioning back inside.
Automatic sprinklers were going on neighbors’ lawns; the garbage truck was making its rounds. People were up walking themselves or their dogs. Some were even braving the humidity and running.
And I was taking my first bike ride of the season.
My husband had given me a new bike for Mother’s Day a few years ago, and I loved riding it. I’d take my daughter for rides around the neighborhood almost daily, and in the summer, I’d get up early and go for a solo ride before he went to work. I loved having my bike and even though I am not much of an athlete, I love the motion of being on two wheels.
One of the “pearls of wisdom” I received when first diagnosed with Lyme was, “Eat right and exercise.” Both of these directives proved to be the most inadequate and unrealistic advice I’ve ever received in my life, because 1, —I couldn’t eat anything of great nutritional value without being in pain and 2, –I had no energy to exercise because I couldn’t eat!
When I felt up to it, I’d try to do 15 minutes of walking in front of my television , my arms briskly pumping back and forth. But it was a boring way to exercise. Sometimes, I’d add a little running in place just to break it up. I’d set my timer on my phone and constantly check it, thinking, “When is this 15 minutes UP ?????”
But today was different.
I got up early, threw on some biking clothes and my helmet, and Rode.My.Bike.
It was short 20-minute ride, only around my neighborhood on the level streets because I knew I wasn’t ready to tackle any hills yet, but it felt good to FINALLY get out there and exercise.
My knees definitely felt creaky and achy, so I know I need to keep doing this to get rid of the Lyme bugs in residence there.
But it was a good ride, and I’m looking forward to another one tomorrow.
I worked for kids. I was a vibrant Kindergarten teacher for 16 years. I loved creating my own puppets and lessons, and I had a loyal following every year! My students and colleagues loved a puppet that I created out of a wooden fork from the dollar store. I used him daily to teach sight words, and on Fridays, I’d invite the whole Kindergarten and special education classes to my classroom for a “show”. It was funny and silly and sometimes off the cuff, but none-the-less, it was a great way for my little scholars to learn abstract words like ‘here’ and ‘will’. They loved these lessons, and I would try to improve on my lessons each week with various props, songs, and little stickers to give to the children. Even the adults would get into the act. One of the paraprofessionals gave me different seasonal-themed bow ties to put on my puppet friend, which I still have and use each year. My principal wanted to create a theme song for him. And I loved every minute of it.
Now, I work for Lyme. I took a leave of absence from my teaching job this past January, becoming my own Lyme doctor, working towards better health. I read books and articles written about Lyme by doctors, researchers, and victims. I search blogs and websites, trying to find any new information that can assist me. I cross-check any healing therapy that seems to be too easy or too good to be true with a friend who has been a Lyme warrior for many, many years. I create my own recipes because my system is so fragile and can’t digest even the smallest amount of carbohydrates without feeling like I’ve gotten stung by bees. I limit going out to eat since I don’t have access to the foods I can eat or the 40 oz. or more of liquid I need to drink. I record and track my food, water and supplement intake each day, as well as check my blood sugar to ward off diabetes. I listen to advice from all sorts of people who are either suffering themselves or know of Lyme victims and have information to share.
I have numerous appointments with my primary doctor, naturopaths, and up until recently, my dietician. I am always on the look out for other avenues to help me, obscure or ‘out there’ as they may be. Lyme is a smart body terrorist, so I need to be smarter to beat it. It morphs and changes and knows when you are on antibiotics, hiding in your joints and muscles, waiting for you to show your weakness so it can attack with pain, fatigue, and loss of concentration and focus. It causes multiple levels of damage to your body and brain. Everyone’s chemistry is different, so everyone’s reaction to Lyme also differs. I have to work to be sure that I keep my stamina up and reactions under control while fighting Lyme every day.
I write about my experiences as a therapy but also as a way to help others. I ‘post’ and ‘follow’ on Twitter, Facebook, and WordPress. I seek out ways to help the Lyme community by sharing my own experiences to educate and inform those who are misinformed, misdiagnosed, or both.
Working for Lyme has led me down very different paths to wellness. My most recent experience has informed me about Ellie Lobel and Bee Venom therapy (BVT), which is pretty ironic, considering that is how I describe how I feel when anyone asks what my inflammation feels like! She was a scientist before being bit by a tick when she was 27. A chronic Lyme sufferer for 15 years, she was in complete organ failure and was on the road to her death. She had moved out to California, and had unexpectedly been stung repeatedly by a swarm of bees, which turned her whole immune system around. You can read more about her story here:
She now travels around the country, educating people on using bee venom from live bees to combat Lyme disease.
This seems like a ‘too good to be true’ type of solution, and yet, if it worked for Ellie after 15 years of living with the ravages of Lyme disease, could it work for me? And what would my results be after having only been dealing with Lyme for almost a year versus her 15 years? Would my results be quicker, or would I have an adverse reaction to the venom?
According to Ellie, you need to start a detox process prior to starting actual stinging, which outlines on her Facebook page. Additionally, you need to have an EPI pen and Benadryl available at each stinging session, just in case. Her method is very controlled and specific, which is in an effort to both kill the Lyme as well as limit the herxing reaction that will come afterwards as the venom works its way into your system. If you are unsure how you will react to the bee stings, you do a test sting first. After the initial test sting, you add one more, and then you increase the stinging by two’s, slowly adding two additional bee stings over time, so you are up to ten stings in one sitting. OUCH! Depending on your herx, you may stay at only two stings for several weeks. You only add more stings as you feel you are ready. And you continue to use your detox protocol in addition to the stinging routine. Since this is a controlled method for killing bacteria, you sting 3x a week, which allows you the weekend to also detox and recoup. Stinging is also very specific on your body: one inch on each side of your spinal column, spaced out up and down, to allow the venom to travel through the nerves to your extremities.
Many people across the country and the globe have experienced success with BVT for centuries, and for a variety of illnesses. And yet, I am torn with trying this method, because I know that with every plus, there is a minus. On the one wing, if I can contract an illness by an insect, why can’t I utilize another insect’s natural body chemistry to combat it? Makes sense, right? But then I on the other wing: what if BVT doesn’t work for me? I want to know about any anomalies in BVT and Lyme disease before I get involved with the whole process. With my luck, I’d be the one person who doesn’t take well to BVT and have an adverse reaction that won’t let me live to tell about it.
I am still working for Lyme, and I have found that my work with my diet and whole food supplements have started to change my immune system. I have more energy, my brain fog is slowly lifting, and my nails are no longer thin and brittle. Perhaps a little more work with the bee venom will set my immune system completely straight. Or perhaps it’ll set me back another six months! I still want to research it a bit more before I buzz into the BVT hive.
Have you utilized BVT to treat a chronic illness? What have you experienced?
When I was first so sick in the winter months from Lyme, I couldn’t read for more than ten minutes at a time.
It was devastating to me.
I’m a teacher, and I love books. Even before I became a teacher, I loved books. I couldn’t go into a bookstore without walking out with at least one book either for myself or for my classroom. When I received my first Kindle, it was like manna from heaven. Access to so many books without having the weight of lugging them around was just too good to be true. I get the NY Times book review in my email, and it is just crushing to me how many good books are out there, just waiting for me to read. It’s like brain candy is being thrust at me with an enticing coy finger, because truly, there’s never enough time to even BEGIN to read even 1/10th of the books on the list each week! Just thinkingabout all those books is making me salivate…
And yet, this winter, my brain was literally reduced to mush just as quickly and easily as turning a page.
Over time, with a lot of help from various people and a lot of dedication to eat right and take numerous whole food supplements, I am starting to see little glimmers that my brain is starting to work again. It must be all that kale and green tea I’ve been eating and drinking!
Around March or April, I noticed a slight shift in my reading stamina, and I could read for up to about a half an hour before I began to lose focus. It was a slight increase, but that was a sign of progress to me that my brain was starting to heal.
I went to the library with my daughter about 3 weeks ago, and took out a bunch of books. Even with my Kindle, there is something to be said for holding a real book in your hands. So I am a multi-format reader reading “the real deal” and the electronic book format.
In spite of the fact that I already had a few books started at home: Above All Things, by Tanis Rideout and The Last Runaway, by Tracey Chevalier, I still came home with more books. And both of those books had to take the back burner once I picked up All the Light We Cannot See by Anthony Doerr and Ana’s Journey by Jenna Bush. I also selected a drawing book and two other ‘how to’ art books.
I finished All the Light We Cannot See over the July 4th weekend. Finishing it before the month due date was as a huge task to personally celebrate, seeing that the book was about 700 pages. Better yet, I could actually recall what I had read previously, which was yet another wonderful milestone to recognize. If you’ve read the book, you know that it is not written in a linear fashion, which makes it an even more complex and enjoyable read. And if you haven’t readit yet, I highly recommend it as your next book to read! I’ve started a Pulitizer Prize winning list on my Goodreads account as a result of this book. Why not read the best of the best, right?
Ana’s Journey I read in a day. It wasn’t a complicated read, so that short time frame didn’t really surprise me.
My brain is on fire, (key in Alicia Keyes here….) so I went back to the library yesterday, and I’ve read two more books in a span of two days.
I read Murder in Connecticut, by Micheal Benson, about the Petit murders in Cheshire, Connecticut. And today I started and finished reading Blood Brother, by Anne Bird, a long-lost sister of Scott Peterson. She recounts how she reconnected with her biological mother and Scott about two years before pregnant Laci went missing and was later found dead in San Francisco Bay. Again, not complicated reads, but still pretty cool to me that I read two books in two days, considering that only a mere six months ago, I couldn’t read for more than ten minutes!!
It seems like my brain is now on overdrive, wanting to make up for lost time not being able to read for so many months.
Next up: Left For Dead by Pete Nelson, about the USS Indianapolis and a young student who wanted to clear the ship captain’s name. This is yet another book purchase that I actually acquired from the library’s used book sale.
I told you I can’t leave a book store, or a library apparently, without purchasing a book!
Summer is tanning season, but it is also burning season. Beach goers and parents alike lather up on the tanning oils and sunblock to either draw in or ward off the rays of the sun.
Luckily for me, I can easily feel the burn without having to go outside and bake in the sun to actually get burned, thanks to my tick sick blood.
People ask me with a concerned look on their faces what it feels like when I eat something that bothers me. I tell them it’s like having a million bee stings in your body or a sun burn from the inside out. My skin even has a little red tinge to it all the time if you look closely. Even more curious about my inside burn is that different parts of my body will react with different foods that I eat. I ate some forbidden spreadable cheese and crackers the other night to see how I would feel. My knees were stinging all night. Those yummy Hershey bars make my upper arms sting and you can actually see the redness on the backsides of them. “You are what you eat” really means something to me!
I’ve learned through burn and error that basically anything green seems to be the best food to reduce, but not eliminate, the sensation of my inner burn. Kale, green tea, roasted brussel sprouts, romaine lettuce, and cucumbers are good ones. Even olive and green tea soap seems to soothe my skin. Peppermint, not so much.
It’ll be interesting to see how I feel once the New England winter comes…will I still have the raging burn inside or will the going out in the winter chill bring some relief?
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
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:
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
Green Tea (brewed at home, not purchased with artificial sweeteners)
Green vegetables like cucumbers, asparagus, and broccoli
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)
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.
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!
Fluids are Good!
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
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
In 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!
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!
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.
TAPE INVITATIONS RIGHT ON THE CALENDAR after you write the information down.
ORDER GROCERIES ONLINE. Many stores save your lists, so review your last week’s order before adding new items.
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…)
I hope you enjoyed this guide to Lyme and tricks to healing.
Remember: your attitude is everything and will determine how quickly you heal!
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.
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.
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.
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.
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.
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.
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.
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.