Have Lyme, Will Travel….Maybe

 

My Lyme adventure creates new experiences for me every day. As a teacher, I have learned that your own reactions, coupled with lesson planning, directly impact how your students will respond. With my Lyme, the same edit holds true, only that it applies to food. The food I eat impacts how I feel, and what I consume or do each day can cause pain, fatigue, or a semblance of normalcy. I say a semblance only because when you have Lyme, normal for you isn’t the same normal as everyone else.

I am slowly starting to get the whole process of eating to be of a comfort to me and not a painful encounter. The problem is that I am still unclear as to knowing what foods will help or hurt me. But is it very evident that there are no more quick trips to McDonald’s for me anymore. And if I want to eat at a restaurant, it requires first checking the menu before sitting at the table.

Recently one night, we were out, and we hadn’t had dinner yet, so we decided to stop at Bertucci’s for dinner. Now, I have learned that tomatoes and cheese are two of the most toxic foods for me right now, but I can have salads, so I scanned the menu. Chicken Caesar salad seemed to be the best choice: chicken has the protein I needed, and the dressing has cheese, which I knew will bother me, but I thought the chicken could off set some of that pain. I also thought that the amount of chicken in the salad would be enough to satisfy me, but I quickly found out that I was wrong.

My body chemistry is such now that I need a lot of protein—like up to 8 oz. or more a meal–to keep my hunger at bay and my stamina flowing. That salad wasn’t even an appetizer for me! So I had to make another whole meal for myself when I got home because I was starving. This little night out was eye-opening and stomach sealing because now it confirmed for me what it is like to be at the mercy of a food allergy or Lyme or any illness that compromises eating. And I wasn’t happy about it.

We just recently got back from a weeklong trip. Again, I checked the menus before we left just to be sure that I’d have something to eat. It seemed  I’d be eating lots of chicken. I reasoned that in and of itself would be ok, but after the Bertucci’s experience, I wasn’t anticipating being full, and that’s for sure! I measured out and packed Ziplock bags of peanuts to keep with me during the day; even though they bother me, I was willing to risk the muscle pain to keep my stamina up a little bit during all the walking that we would be doing on our trip.

Breakfast was tough; I could only eat scrambled eggs and bacon each morning since everything else available was carb and sugar laden: different pastries and muffins, potatoes, croissants, cereal, fruit, pancakes and waffles.  There was sausage available, but after day 1, I knew I’d be bypassing that…it was gross.

For most of our lunches and dinners, I was able to eat steak, which was a welcome surprise. The portions were decent, so I wasn’t too hungry afterwards, and I was able to keep up the pace of the trip for the most part.

At one restaurant, however, the only meal that I could eat on the menu was a hamburger w/ Pepper Jack cheese. (I had endured a bad reaction to green bell peppers prior to the trip, so I kept Benadryl in my bag in anticipation of situations like this!) Of course, I felt the stinging in my arm muscles after eating that, but my choices were between being hungry and lethargic or have stinging pain…I chose the pain.

On our last day, we stopped at an Italian themed restaurant. The atmosphere was lovely and reminded me greatly of a trip to Italy we had taken three years ago, but I knew I was doomed when it came to eating. The menu, of course, was dripping with tomatoes and mozzarella cheese. I picked a meatball dish, again trying to reason that the protein in it would help with the stinging that I knew I was going to feel within a half an hour of eating.

But the meatballs weren’t the big ones you saw in the Lady and the Tramp dinner at Tony’s; they were five little ones that are the size of the frozen bagged variety from the grocery store. Not good.

At that point, I just threw in my fork and ate everything. What was the difference? If I was going to be in pain, might as well at least eat some foods that I hadn’t eaten in months. So I ate a caprese salad (the tomatoes weren’t  really ripe, but he mozzarella cheese was pretty good), a bite of a bread stick, and lemon cheesecake for dessert. I was like a stingray after all that, but it was the last day, and I had done pretty well with eating considering that I was at the mercy of a restaurant for every meal for six days.

For anyone suffering from food allergies, I feel your pain, both literally and figuratively. Each day is a guessing game at the dining table with Lyme as your companion. If I am home, I have more control over what I eat and how I feel. But if I have to go out to eat, it’s a crapshoot. And I’m not good at hitting the target. Maybe with a little more practice….

Yours in Lyme Adventures,

TWL

 

 

 

 

 

Magic Little Pill

Science, to me, is an amazing entity. There are all these wonderful people on the planet who think about and develop and test ways to improve our lives. Scientists, to me, have so much more power than even the President of the United States. From medical cures to animal preservation and environmental conservation, to space exploration and weather predictions and technology, we are always benefitting from the advances of Science.

When I was pregnant with my daughter, I can remember women talking about their labor stories. Who did it naturally and was proud of it, who had planned C-sections, and who took the Epidural. Every woman’s labor story was different because of her needs and experiences. Sometimes Mother Nature helped along to make those decisions, and sometimes, it was Science. For me, I knew from the minute I became pregnant that I wanted the drugs. I wasn’t one to use medications on a daily basis for even the minutest of pains, but I knew that labor was a whole different beast, and if Science had a way of easing that pain, I was going to reap the benefits of it!

The epidural was like a miracle to me…one minute I was in excruciating pain, the next, no pain at all! I humbly thank the Scientist(s) who developed that drug to help me. And I respect all women who go through their labors in whatever manner they choose-with or without Science.

Now with the Lyme adventure front and center in my life, Science again has both left me adrift and come to my rescue in different ways. Several different doctors have tried to help me, but through no fault of their own, I have had to find a different route to find that “magic little pill” that I have come to know as a cure for any illness.  Sadly, Lyme isn’t just any illness, and much like a cancer, there isn’t one foolproof way to ‘cure’ it. It morphs and changes in your body. Lyme is like a terrorist in your body; it hides from antibiotics and attacks full force when you least expect it. For me, I can always feel it hanging out, like questionable characters on a street corner, staring you down as you pass by.  A slight stinging in my arm and leg muscles and joints is always with me from the moment I wake up. Whenever I put any kind of  Lyme-loving compound in my system, it attacks full force.  And the reactions that I happen to have are quite intense and painful.

Even though I have Lyme in my blood stream as well as some other germs, all the medical doctors I have seen: my primary doctor, infectious disease doctors, and even a neurologist, all say that I am just suffering from a virus, and it has to run its course. Now, I respect these doctors and their expertise, but up until this point in my life, I have never had any sensitivities or allergies to anything I eat. Now,  I can’t eat any carbohydrates, including fruits, nightshade vegetables, peanuts, or dairy, without having an allergic reaction that sometimes requires taking a Benadryl, a drug created by Scientists.  Doctors, please tell me….what virus is it, so that I can treat myself properly?

I have come to terms thinking that my medical team is working on the knowledge that they have from their own Science backgrounds, and because Science evolves every day, it may or may not be helpful to me.  My body chemistry is highly sensitive now to foods that I have never, ever had a problem with over my entire 46 years of life. I can only conclude that just because I have been treated for Lyme with antibiotics, it doesn’t mean that I have even begun to be ‘cured’ from it.

There is no magic little pill that is going to help me with this awful tick blood I have. It’s going to take my own kind of Science that I discover, and the Science of any one else that I can learn from, to reap any benefits to help me feel better. So far, my naturopath and dietician have started to steer me in the right direction.  I can only hope that I will continue to find new ways to help manage the pain and uncertainly that Lyme brings.  It will require me to continue to reach out to people, read books and essays on all kinds of therapies and topics, and try strategies and ideas unknown to me to regain some sense of normalcy. That’s what we do to fight terrorists, right?

I wonder if Scientists are working on ways to eradicate the tick population completely? That would be a positive step in getting rid of this disease. And I would glad celebrate in that discovery!

Yours in Lyme Adventures,

TWL

 

Sleep, Baby, Sleep ….

At the start of all of my medical adventures, I was so weary. Tired didn’t explain it and fatigue was the medical word out there, but that still didn’t feel right to me. Exhausted wasn’t quite correct, either. Weary seemed to capture some of what I was feeling. It didn’t matter how much sleep I got, I still felt as weary as I did when I went to bed.

We had a funeral service to attend in January in Rhode Island. I had just been diagnosed with Lyme, so I was really in the infancy of my learning about this illness. We planned on staying over night, and it was during this event that I actually didn’t sleep for a full day. My body was just awake. I didn’t feel weary, exhausted, or even tired. I took two melatonin pills that night to fall asleep because I knew my body needed the extra help to do so.

After I took my medical leave from work, I would try to do some of my normal routine and get up to make my daughter’s lunch and breakfast, then go back to bed for a few hours. I was that weary from just doing those two every day activities. It was mind-blowing to me. I was used to doing 3 or 4 things at once, and now I was reduced to being in my pajamas and so, so weary… All. The. Time.

I can remember thinking about the previous summer and how I would be tired, but not weary. I wished I could turn back the clock to those few months, but I knew that could never happen. When you’re sick, it doesn’t really help you to think back to when you were healthy. It just adds to your misery and confusion.

As a mother, and I think many are like this, I feel I need to be in charge of everything “motherly”, like food, clothing, homework, and cleaning. My husband had to take over much of these duties early on for me, because I just didn’t have the stamina to do any of my normal 492 motherly activities. At times, they weren’t done the way I would do them, but who really cares in the end? Just me. There isn’t a house police force inspecting how and when the laundry is done, nor is there a food inspector checking on how and when groceries are purchased.  The leaves will get raked or just decay…who really cares? And the kitchen floor could use a good scrubbing….but it’s just going to get dirty anyway, right?

In March, I remember seeing some leaves by our back door that I wanted to rake. That half hour job put me on the couch for 2 hours! After that, I went to see a naturopath because I just couldn’t stand feeling like that after such a mundane activity.

I am feeling better now that I am seeing my naturopath, and I do see a difference in my energy level that I didn’t have back in January. But I still get tired as my body adjusts to its new chemistry, and I realize that I will need to be my own best doctor. When I need to rest, I need to do it, regardless of what other duties I think I need to complete. My health will only improve when I take care of myself.

No one likes to be tired, but it beats being weary.

Yours in Lyme Adventures,

TWL

 

 

Walking Science Experiment

When I first believed that I had lyme in December 2015, I talked to numerous people about lyme and what to eat. A close girlfriend of mine had a very severe case of it and still struggles with it daily. One of the things I heard from her was to eat gluten free products. Lyme feeds on sugar, and gluten transforms into sugar. So I began to stock up on gluten free bread and crackers. I even bought gluten free chocolate chip cookie mix to try out.

It was so early on in my illness that I was having inflammation constantly, and I wasn’t eliminating anything but the obvious carbohydrates like regular bread, cookies, crackers, and sweets. We like breaded chicken and pork chops, but for me now, that meal was out. I bought gluten free bread crumbs to try out one night. It was a pain cooking with two different types of bread crumbs, but I knew I couldn’t pass off gluten free as regular to the keen eyes and stomachs of my daughter and husband.

The gluten free bread made by UDI’s wasn’t bad…as long as you toasted it. So, I’d make it w/cinnamon or peanut butter in the morning, or use it on tuna fish sandwiches for lunch.

And the cookies were very sweet…a yummy delight to me!

I was still eating cheese at that point, so I’d try to eat gluten free crackers with them. Again, not too bad, but still facing issues with inflammation.

I was also eating fruit. I had read somewhere that pineapples have a compound in them really good for combatting inflammation. Great! I loved pineapples and I was dealing with inflammation– a win-win in my eyes. So, I bought Dole canned pineapple already cut. I made sure there was no extra sugar—I was starting to become a label reader at this point, and I knew sugar was not good for me by my own body language.

But even eating the pineapple or a regular apple for a snack would give me inflammation. After a while, I realized that fruit is all natural sugar—and my body for some reason just couldn’t handle it. So there went the fruit. I was also drinking lemon water daily, thinking that would help to cleanse my body. It would be three months before the light bulb went off in my head: LEMON IS A FRUIT—maybe that is why I was also having a constant stinging in my system every day!

Ok…with the fruit gone, I still felt like I had some options. I loved vegetables, and I could still eat my tomatoes, cucumber, and mozzarella salad for lunches and snacks. So, I began eating that religiously in the morning for my snack. It was a favorite, although I’d still have inflammation, however slight.

I was steadily becoming a label reader, checking carb numbers on anything that was packaged. I knew that anything higher that 5 or more carbs per serving would cause my inflammation to perk up. At one point, I compared the gluten free bread to regular bread, and I soon discovered that the carb content in both was virtually the same! And since a carb is a carb, my body couldn’t handle either type of product. So…that cut out the gluten free market from my diet.

As the months ticked by and I made my way to my first naturopath appointment in March, she took me off cow cheese as well. Oh man! That hurt. I loved cheese, and it was a natural source of protein! Now, the options on my plate were really getting smaller. Since she prescribed some heavy duty supplements, I was also directed to drink at least 64 oz of water a day! That seemed like so much I would float away! But she knew more than me about my health needs at that point, so I began tracking my food and drink intake as instructed, and drank the 64 oz of h2o a day. I had a Tervis tumbler I had gotten for work which held 20 oz of fluid…and as the days ticked by, I could drink one of those at one meal, so 60 ounces or more became no big deal.

In addition to the naturopath, around the same time I went to a dietician because my meals were becoming less and less in terms of calories and content, and I knew I needed help. She instructed me to get at least 4-6 oz of protein with each large meal. And that definitely helped me feel satisfied and not get lethargic during the day. She had also suggested that I begin cooking in bulk to have meals on hand for myself, since my diet was so compromised. So I decided to go to the library to find some cookbooks that would help me. All of mine were for regular people meals…not tick sick people!

I took out a few books that I thought might be helpful, including a Paleo slow cooker cook book. The next night, I went through the book and found a few recipes to try out. Stuffed peppers sounded good…it was made with things I could eat and using the slow cooker for something other than chili would be great.

I know that early on in my illness, I had read on some website about foods to avoid, and yet it never occurred to me until after I made the stuffed peppers to recheck that list!

I made the peppers the next morning, and kept the residual turkey and pepper meat mixture to eat for dinner. I took a little taste of it after cooking it on the stove before stuffing the peppers, and noticed a little buzzing in my system, but I didn’t think anything of it. At dinner that night, my husband and daughter had pasta and sauce, and I ate my turkey and pepper mixture. Within an hour, I was so itchy under my chin and my neck and my stomach! I couldn’t believe it! It was so bothersome I had to take a Benadryl.

I checked that list again, and sure enough: no tomatoes, potatoes, peppers, or eggplant! So much for the stuffed peppers!

Every day there are new symptoms and things to learn around lyme and my body. I am truly a walking science experiment. And now I know to keep a copy of foods that I can’t eat in plain view! Experience is the best teacher they say…for me, it can be a painfully itchy one!

Yours in Lyme Adventures,

TWL

 

 

What is it?

I have always been a healthy person, until December 2015.  Then I noticed changes in my body and stamina that really signaled to me that something was very wrong.

I have been a Kindergarten teacher for 16 years, and I have had my challenging years.  This year wasn’t one of them.  My class was an absolute joy, but once the holidays came around, I knew  I wasn’t going to be enjoying them too much longer.

The symptoms I had came on slowly over time.  Most notably, it was the joint and muscle pain that got to me first.  I had moved into a new classroom, so any pains I felt in my arms or back I would attribute to moving furniture at school or doing yard or garden work at home. I would notice that my back hurt when I slept at night, or my elbows were more sore when blowing leaves with the leaf blower.  It wasn’t until December, when I couldn’t hold a hairdryer without immense pain in my left elbow, or hold a gallon of milk without two hands, that I knew I had to get to the doctor.

Initial blood work confirmed that I had lyme, although the amount present wasn’t enough to market me as a full-blown case.  I was put on doxycycline for a month. I was told it would take 3 months for the antibiotic to get into my system, and then another three months for me to start to feel better.  Not a good prognosis for someone who has 16 students waiting at school, but ok.  At least, I knew what I could expect, or so I thought.

At this point, I was extremely weary and could not really do more than sleep and eat.  Getting a full night sleep was not rejuvenating.  I woke up feeling just as weary as I did when I went to bed. And the eating became very challenging as I would have extreme inflammation after eating any carbohydrates.  I had talked to various people who had lyme, and I was told to get gluten free products.  Sadly, for me, gluten free bread and crackers still meant lots of carbs that my body just couldn’t handle.

And I tried!  I really love my sweets, so in a weak moment, I’d eat a ‘healthy’ peanut butter cup made out of soy butter….but i’d still get the pain in my muscles.  I married an Italian, and we live on pasta and bread…I would soon learn that these foods would cause more pain than joy.

Even eating an apple or some pineapple, which has properties to combat inflammation, would leave me in pain.  So, I wasn’t eating much and I was still extremely tired.  I’d get up to help get my daughter on the bus for school, only to go back to bed until 10 or 11.  Totally not me, and totally not good when you have to work outside of the home.

So….I made an appointment with a rheumatologist who was well known in the area.  I was impatient for 3 months to go by to start to feel better,and I wanted to be sure I was doing everything I could to get better.  He reminded me of Stephen King with his wispy hair, pointy nose and thick glasses.  And he was very quick during the two appointments I had with him. He took a look at all my previous blood test results and announced that “No, not lyme….you have fibromyalgia.  Take these Lyrica and come back to me in two months.”

I walked out of that office and never looked back.  He clearly was only looking at one of my symptoms, not a combination of them. And the amount and intensity pain I had was clearly influenced by what I ate, which signaled to me that something was causing my issues.

In January, I went to a neurologist because I was having sharp pin prick pains through my body.  He requested an MRI of my brain, which thankfully showed no problems with my brain.  He also requested more blood work, as he thought I had a virus. The results showed coxsackie and EBV in my blood.  So…I had all these things going on, and he says, “Well, you don’t have lyme, just coxsackie.”

“How long will that last? ” I asked.

A curt, “Six months,” was his reply.  Okay, then. Another diagnosis.  What to do? Now, I have 3 different diagnoses, the same symptoms, and no real treatment plan.  Wonderful. (Side note: coxsackie and EBV can be co-infections with lyme)

My next stop was  going to an infectious disease doctor, who  said there’s no way to tell what was really causing my issues, but just eat right and exercise.  OK. That was helpful!  Back to square 1.

February came with the flu.  My husband became ill with it, and within 24 hours of him just coughing in the house, I became very sick.  I had 103 degree fever and chills, but even worse than that was the pain I was having all over my skin!  I got in the shower to wash up for my doctor’s appointment, and oh boy!  I was in tears…the pain from the water hitting my skin, and me just running my hand over my skin to wash, was unbearable.  He put me on an antibiotic and Tamiflu, even though my flu test came back negative.  After four days on the antibiotic, I developed thrush in my mouth, so I had to use an oral rinse. I ended up doing the rinse for 14 days because the thrush was so persistent in sticking around.

By this point, I knew that my immune system was so compromised that I tried to heal myself with supplements.  I was taking a Super B complex, a multivitamin, and a probiotic.  But nothing really seemed to be giving me what I needed–basically energy and relief from joint and muscle pain.

On top of all this, I am pre diabetic, so I was also taking Metformin. I had a conversation with my cousin, who happens to be a pharmacist.  She suggested that I try grape seed capsules or mango stein.  Both of these are all natural, which I liked knowing.  I began tracking my sugars, and what do you know, the grape seed capsules were working to keep my sugars well below normal!

I had made an appointment to go see a diabetes doctor, and because my levels were so good, she didn’t even require me to come back for  a follow up.  Which was good on the one hand, but also bad because she couldn’t really give me any hints about eating carbs.  She suggested a dietician that she sends clients to, so I put that name on my list to call.

March came, and we had some really warm weather.  I was outside one day, and the sun was shining and it was  warm, perfect weather. I decided to rake out a small area by our door, as the winter winds had left some leaves.   After only a half an hour of raking dry leaves and bagging them, I needed a two hour nap!  This was one of the many tipping points for me.  I was used to doing my whole yard in a few hours and here I was doing such  small area and getting so weary so quickly!  I so frustrated by all these things happening to me all at once, and yet I couldn’t get a clear direction on what to do to get well. It was like shooting at a target and missing every single time.

I spoke with some family members, and decided to make an appointment with a naturopath.  The woman’s office was very earthy…cozy with mismatched chairs, books about health and healing, and little frogs on the counter.

When I met with her, she looked at all my paperwork and interestingly, we had a brief conversation about the rheumatologist; she didn’t think very highly of him either! Naturopath : 1,  Lyme: 1.

She had me start tracking my food intake and also had me start on some more powerful multivitamins and echinacea as well as vitamin C.   Within just three weeks of being on these supplements, I noticed a huge difference in my energy level.  I was not weary anymore and I actually felt like doing things around the house.

Naturopath: 2, Lyme: 1.

After meeting with my naturopath, I was also able to get in with the dietician, and she too, was very helpful.  Her office is very sleek and modern, and she too wanted me to measure and weigh my food and track my liquid intake. So far, I have seen another positive side to my illness after making these changes. By making sure I eat at least 5 oz of protein with each large meal, I don’t feel hungry or get as tired.

She also suggested a book called The Whals Protocol, which is all about a doctor’s journey in healing her MS through healthy eating.  But not just any healthy eating–a very specific plan of 9 cups of greens and vegetables daily.  I’m going to buy the book this week.  I can’t imagine eating that much of veggies and greens, but what have a got to lose?  As it stands now, I do eat quite a bit more of veggies than I have ever done, so even increasing it just a bit more each day can only be more helpful to me in the long run.

Dietician : 2, Lyme: 1.

I am still discovering things as I go.  Most recently, I found that am highly sensitive to nightshade vegetables: tomatoes, potatoes, peppers.  The peppers actually make my skin itch!

So the  “You have a virus” diagnosis just really pushed me to confirm to myself that I do have lyme, and I will need to be my own best doctor to help myself.  I hope to continue to share what I learn on this experience with you.

Yours in Lyme Adventures,

TWL