the spoon theory

spoon

Dear Lymie friends and loved ones,

This one is for both of you! There is a growing number of people who call themselves “Spoonies”. The “membership fee” is steep — you must have an invisible disease. Lyme Disease and the accompanying co-infections make Lymies perfect candidates.

The “Spoon Theory” originated from Christine Miserandino (a Lupus patient), who used spoons as a metaphor to explain what it’s like to live with an invisible disease.  It has become so popular that many chronically ill people now call themselves “Spoonies” and ask their loved ones to read the story as a tool to help them communicate. Cool, huh?

You can read “The Spoon Theory” on her website, or watch her read it here.

I hope this will be helpful to you!

making sure your relationships don’t tank

Seals sitting on a buoy

Seals are cute, huh? Okay, but I chose this image because buoys stay afloat. This is what we want for our relationships. We want them to keep floating.

Dear Lymie friend, you have not only acquired a disease, but you’ve also acquired the responsibility of learning to communicate difficult things. The good news, however, is that even though bumbling through a new disease is awkward, being a good communicator is an awesome life-long skill.

Full disclosure: In my five years of being symptomatic, I’ve learned a lot… mostly through error. I still have a lot more to learn, but the things I’ve picked up along the way have been awesome — helping me communicate about my illness and strengthening many of my relationships. The things I want to talk about are useful for anyone. They’re simple. These things have been helpful for me to learn, and I hope they are helpful to you to think about too:

  1. Communicate how you REALLY are to those closest to you. Granted, I know you won’t want to share your health-journey with everyone, and I highly suggest you don’t. But, for the people in your life that you love dearly, you’ll want to share with them what your life is like. They’ll be scared for you. They won’t be sure if it’s okay to ask questions, or they might ask too many questions (remember that they’re scared?). Communicating how you REALLY are can help them be settled and ultimately make your relationship easier. If they understand how badly you’re hurting, they will understand why you’re slow to communicate or have to cancel so many plans. It’s both helpful to them, and a safe-guard for you. If they know how you truly are, they can support you better.
  2. Communicate what your limits are. This is a tough one! It’s hard to know what your limits are, because your symptoms change almost every hour. This is a longer discussion (perhaps for a future post), but learning your limits is important for you and for your loved ones. They will forget how sick you are, because you don’t look sick. They’ll plan vacations and holiday schedules that you can’t keep up with, and it’s up to you to be honest about what you can and can’t do. The more you communicate your need for rest, the more they can adjust their expectations for their time with you. Those are special occasions, sure… but there are every day examples too. You’ll plan a lunch or rsvp to bring a cake to a party that you have to cancel last minute. If you let people know ahead of time that your “yes” is a “yes” in your heart, but that actually you’re always a “maybe”… they can plan to be flexible. That makes it easier for you to feel like it’s okay to listen to your body and cancel, and it helps them make back-up plans.
  3. Communicate how loved ones can help you. They’ll want to help. They may have ideas of how to help you, or maybe not. But, it’s up to you to accept it or to ask. Now, you might not be sure what is helpful… It takes some thought. A way to figure out what is most helpful is to make a list of the things that most stress you out. Then, ask others to do them for you! Genius, huh? Here are some things I’ve asked for help with in the past: rides/emotional support for doctor’s appointments, lunch delivered to me, freezer meals from friends that I can pull out when I’m too tired to cook, friends doing my grocery shopping, letting my husband call the insurance company and figure out all of the craziness for me, and prayer on particularly bad days. Letting people see you in your hard moments is vulnerable, but they are also the times when you most need to feel loved and known. Letting people serve you will ultimately bless them as they get to feel included in your life. And let’s be honest… help is… well helpful.
  4. Ask for forgiveness when you misstep. Frankly, I spend a lot of my life apologizing. Granted, being sick isn’t “my fault”, but I am not the only one living with the consequences of my sickness. I cancel appointments, lunch dates, and family get-togethers all the time. My heart would be to go, but my body says “no.” I also forget important things, sometimes REALLY important things. It seems like no matter how many reminders I set on my phone, post-it notes I leave on the mirror… I can’t remember many things. My brain is confused and forgetful. I don’t mean to forget, but my forgetfulness often means that people go days (or weeks or months) waiting on a response from me. Oh dear! I also fly off the handle sometimes. I hate this one. This one is the worst. I’m not actually angry (okay, sometimes I am), but I’m moody because I’m in pain or angry because I’m having ANOTHER seizure in the lobe that’s responsible for my emotions (now, that’s seriously not fair). My husband gets the brunt of it. He knows I don’t mean it; he knows that I’m in pain. BUT I care about him deeply. I’d never want to hurt him, and it’s always worth it to apologize — even when it’s out of my control — in order to communicate that his feelings (even if they aren’t hurt) are very important to me. Dear friend, you will have similar opportunities to apologize for your missteps. Though a lot of things are unintentional or even out of your control, choosing to acknowledge that you may have hurt someone’s feelings or inconvenienced them will ultimately help your relationships. Apologizing even for little stuff is important, as it communicates “I love you so much that I would never want anything to be between us.” Isn’t this a funny point for me to include? Being good at apologizing is a skill everyone needs, not just sick people.
  5. Look for every opportunity to show gratitude. My husband is my hero. I’m daily aware of the ways he cares for me. It’s not only the big things (though the big things are awesome — like that he works really hard, so I don’t have to… all the while paying for my medical treatment) but also all the little things (like jumping up to get me water when he notices I’m out, or heating up my rice bag before I can even ask). It’s made our marriage very sweet, very rich. He serves me by taking care of me, and I serve him by acknowledging him over and over. They’re not the same, but they do wonders for both of us. We both feel dearly loved. Dear friend, not only will fighting to be grateful help you feel more hopeful about life (because you’ll be reminded that your life still has good things in it), but it will greatly bless the people around you who are trying to take care of you. It will keep your heart cheerful and soft, instead of growing bitter and hard-hearted.

Constant pain has a way of cutting off life, cutting off relationships. It’s so easy when you don’t know what to say, when you feel lost in a world you don’t understand, to get stuck and stop trying. Good communication takes effort, and it’s hard when you’re sick. The things I’ve talked about above are the things I’ve done to keep fighting for my relationships. I try my best to communicate well.

Some relationships will likely fall away. Sometimes it’s merely a statement that both you and that other person now lead different lives, and after all… you don’t have the energy to keep up with everyone. Other times (the more sad times), it can be a statement of how they’ve been hurt by your miscommunication or chosen not to believe the best in you. All you can do, my dear friend, is to out of the integrity of your heart, try to do your best with what you know how to do. I know that’s not always a comforting thought, but there is some measure of peace in knowing that you tried to do all that you knew how to do. Being sick doesn’t change the fact that we can’t control anyone’s actions but our own. So, let’s all try to do our best, being willing to bumble around and make mistakes, and then apologize for our missteps where we can.

P.S. You may have noticed, all of this stuff is “life stuff”… It’s not necessarily “sick people stuff”. The reason why I talk about it is that being sick tends to bring a lot of opportunity to mature as people. It’s like becoming sick is the transition from black and white TV to color TV. It highlights so much more what is really going on, and gives you a lot of opportunity to grow.

grieving like a champ

My dear friend, your life has been turned upside down, and I’m so sorry. It’s awful and traumatic.

Having a chronic illness is much more than a physical trauma. It affects you emotionally, mentally, and spiritually as well. If you’re anything like me, processing and understanding how your life is changing will take time, and you may have many seasons of grieving. Today, I just want to tell you that that’s okay, and good.

Grieving helps us process. It helps us understand how we feel. It helps us get ready to fight later. So, give yourself the grace to feel sad, disappointed, angry.

I’m one of those abnormally optimistic people, and I have these deep seasons of grief as well. Sometimes they last only weeks (the easy ones). But often, they are much longer. For me, when it became clear that “this is the way life is now”, I grieved for many months. You are not alone.

I don’t want to pass over your grief lightly, so please hear that you are validated if/when you grieve. I don’t think there is a set “right” way to grieve, but I do think there are “healthier” ways and “less healthy” ways to grieve. Obviously, I’m no expert and would never claim to be. But may I suggest some things to you, so that you have an easier time of it?

  1. Don’t grieve alone. Talk to someone… But not just anyone. Talk to someone you trust. Talk to your spouse, your parent, your mentor, your oldest friend…Tell them anything you want. Or, maybe don’t talk, but just spend time with them. It’s so easy to isolate when you’re grieving, but now more than ever, you need to feel loved and known by safe people. So where you can, please force yourself to be your real, raw self with someone safe.
  2. Don’t let months go by focusing solely on your grief. You will be miserable if your whole world is wrapped up in your health. Distractions are good, especially distractions that cause you to be with people–going for coffee with a friend, exploring a new part of town, going to the movies. You need to have fun. A cheerful heart is good medicine.
  3. Think of ways to make other people happy in the midst of your grief. This is almost a part B of the previous point… When your whole world is focused on yourself, it’s easy to get depressed. You know what can you help you out of that funk? — Serving others. Taking the focus off of yourself for a little while can be a great mental and emotional rest, and best of all, it reminds you that you still have things to offer people. You can still help people, encourage them, spread joy… It reminds you that your life is not over. And it isn’t. You’re not done.keep calm
  4. Don’t allow others to tell you how to feel, or even allow yourself to tell you how you should feel. The word “should” is a red-flag in my life. Any time I recognize the thought that I “should this…” or “should that…” I decide to let it go. It’s okay for you to process your grief in your own way and in your own time. When well-meaning people say something that isn’t helpful, particularly when it puts pressure on you to be “fixed” by now, it’s a great option to shrug it off. You don’t need that. And you don’t need pressure from yourself either. Please, dear friend, let go of the expectation that you have to be a certain way.
  5. Cling to your faith. My experience is my own, so you may not feel this applies to you, and that is ok. I am a Christian, and when I started to get really sick (bedridden sick), I had a crisis of faith. I felt like my life was over, and that I didn’t have any worth anymore. I didn’t think I had anything to offer to anyone. But dear friends, I was wrong. Not only did I still have things to offer people (love, encouragement, cheerfulness in the midst of difficult circumstances…), but this was the beginning of God proving to me that He sees me, will take care of me, and has endless grace — much more grace than I give myself. In this grieving time, I over and over again prayed simple prayers of “Jesus, help me.” I was too tired, too sad to even say more words, but that was all it took. I experienced (and still do) great comfort and provision that didn’t make sense. My life became a complete paradox (hope when I had been hopeless, a promotion in a job where I was sick all the time, served meals and taken to doctors appointments by my friends even though I was doing nothing to serve them back). This is kingdom stuff. God’s kingdom is all about love, hope, and grace that doesn’t make sense in light of our circumstances. It’s beautiful, and you can experience it even now with prayers of “Help me, Jesus. I trust You.”

Dear friends, we are still in the beginning. There is so much in my heart to share with you. Being sick is awful, but your life can still have loads of hope; that’s what I want you to know. Even in the midst of life’s crummiest circumstances, you can have sweetness and richness.

As always, feel free to comment below, and I’ll be happy to respond to you.

getting the most out of your doctor’s appointment

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Lyme Disease has the very unfortunate side effect of “brain fog”—a growing state of confusion, not thinking clearly, difficulty remembering things, etc. Brain fog makes getting the most out of your doctor’s appointments tricky.

This is one area of my life where my “Type A” personality has been a real help. If that’s not you, may I humbly suggest that now is the time to learn to be “Type A-ish” with your doctor’s appointments? You may develop your own system that works wonder for you, and if it’s different than mine – fabulous! But, here is what I do, and it seems to work really well:

  1. I keep a medical journal between doctor appointments (I like typing mine on the computer so that I can make a copy for me and one to give to my doctor). I record weekly my overall symptoms and rate them based upon frequency and severity. By keeping this kind of log, I’m better able to see patterns and less likely to forget the major things that I need to mention to my doctor. (PS Due to brain fog, I highly suggest having a pre-set time on your calendar to do this, so you don’t forget!)
  2. I keep an ongoing list of all my medication (again on the computer—copying and pasting is my friend). I also make sure to carry a copy of this in my purse or on my phone with me at all times. Sadly, you never know when you’ll have unexpected trip to the ER and be asked to recall the 25 different medications you’re on.
  3. The week before a doctor’s appointment, I start talking with my husband about medical questions or patterns I’m thinking through, and ask him to be thinking as well. Even if he doesn’t have any thoughts, I think it’s helpful for both of us, as it reminds us that we’re a team in making these decisions.
  4. The day before a doctor’s appointment, I print my weekly medical journals, as well as my medication list (x2 – your doctor might ask to keep a copy!). I then proceed to make a short “review” (see picture below), that helps me collect all my thoughts. I write down the things that I feel like are doing overall better, the things that are overall doing worse, and then I have a section for questions that I intend on asking. When, I’m all done, I show my husband and say, “This is what I’m planning on talking about with Dr. ____ tomorrow. What do you think? Are there any questions you have that I missed?” And then I adjust if he has any thoughts. And… printappointment example
  5. The day of the appointment, I always ask someone to go with me. Having a friend or loved one along can be really helpful, especially if they’re willing to drive. It allows you to talk on the one way to the appointment and review the things that are really important to you without having to pay attention to the road. I use this time to tell my friend or loved one my goals for the meeting, and ask them to help me make sure I complete them. Again—brain fog is awful. You might get confused in your appointment or even with your detailed notes forget to say something. This is when your loved one gets to chime in because you’ve already given them the “green light” to help make the appointment better. Additionally, you can ask them to take notes, so that you can spend more time talking directly to your doctor without having to also think about scribbling quickly. Use the assets you have! And can I just say – why do something alone when you can do it together?

I hope this gives you some ideas on how to prepare. If you find a prep technique that really works for you, I’d love to invite you to share it in the comments section. We’ll all help each other get better at this.

Blessings and health to you!

finding the right doctor

I alluded to the process of finding a doctor who can treat your Lyme in my post “so you think you have lyme disease”, but I think that it’s worth expanding the discussion.

I realize that everyone must go through their own process of coming to terms with their disease, and even being ready for treatment. By the time I was diagnosed, I had been sick long enough to be desperate to get started. I, like many others before you, have had the experience of being turned away by doctors or finding doctors who want to help but who ultimately don’t have the expertise. I tried six doctors before ultimately deciding that it was worth it to find (and pay out-of-pocket for) a Lyme Specialist.

Now, what is a Lyme Specialist? A Lyme Specialist is a doctor who treats Lyme Disease and other co-infections. They treat these diseases almost exclusively and have dedicated their lives to finding treatments that work. As I said before, there is no known cure for Chronic Lyme Disease (Lyme Disease that has disseminated in your body for more than 4-6 weeks), therefore all treatment is considered experimental. Though it is “experimental”, Lyme Specialists are on the cutting edge of research and have the best chances of helping you.

Now, be prepared that because insurance companies sanction doctors who do experimental Lyme treatment, your doctor’s appointments will most likely not be covered by insurance and you will have to pay out-of-pocket. That’s intimidating, I know. It is the only reason that I waited so long to go to one. But please… May I save you a big headache and suggest you skip right to a Lyme Specialist? Here’s why:lego doctor Lyme

  1. A Lyme Specialist will take you seriously. With each of the doctors I tried before my Lyme doctor, I always felt like I had to convince them, “No, really… I’m sick. I promise.” Frankly, many doctors aren’t up on the current research and discussions about Lyme Disease. Many think it’s a fad to be sick with Lyme, so you end up spending the appointment trying to convince them that you need help. This is not the doctor for you.
  2. A Lyme Specialist will actually know what to do with you. It’s sad, but there is a lot of misinformation about Lyme Disease, and I’ve met many doctors who are unaware that Lyme is in their area, as well as misinformed about basic diagnosis and treatment. There are so many diseases out there, and doctors are trying to do the best with what they know… but they can’t know everything. That is why we need to rely upon the people who really know the disease that you have. You wouldn’t go to your family doctor for your cancer treatment. You’d go to an oncologist. If you have Lyme Disease, you’ll be in the best hands with a Lyme Specialist. They’ll know the tests to run, and they’ll have an actual treatment plan. These doctors have successfully helped many of their patients regain their livelihood.
  3. A Lyme Specialist will say “yes” to treating you. What do I mean by that? As I’ve said before, since there is no cure for Chronic Lyme Disease, all treatment is considered “experimental”. That means that insurance companies will sanction doctors who treat it. So, even if you can find a beloved family doctor or infectious disease specialist who wants to help you (and that your insurance plan covers), they probably can’t without getting in trouble. They will want to help, but most likely can’t without jeopardizing the rest of their medical practice. A Lyme Specialist, however, has willingly alienated themselves from the medical and insurance community to treat people like you. So, you can be assured that when you call them, they will treat you… because they’ve devoted their whole practice to this.
  4. There’s no time to waste. The longer Lyme Disease (and those nasty co-infections) runs rampant in your body, the harder it is to treat. It took me six months and six failed experiences with doctors to come to the conclusion that I would go to a non-insurance covered specialist. I wish I had sooner!
  5. It’s costly, but your life is worth it. Going to a Lyme specialist and trying experimental treatment is scary… mostly because of the financial aspects (at least to me!). However, it’s an investment in your future. It’s an investment in your family. It’s the most important investment of your life—for you and for the people around you. It’s worth it for your sake and for your family’s sake to have your life back. It’s not selfish to spend money to get better. It’s a wise choice.

You may have guessed it already — Lyme Specialists are often seen as pariahs in the medical community. They are either celebrated wholeheartedly or banished. For that reason, many Lyme doctors do not have a strong internet presence, and it is hard to find them. The International Lyme and Associated Diseases Society (ILADS) is a reputable organization, and they can help you find a physician in your area. Go to this page for a physician referral.

Next, I’ll be posting about how to get the most out of your doctor’s appointment. Please comment below with any questions or helpful tips for other Lymies.

doctor who lyme

A little “Doctor Who” humor for you. Get it? Because the post is about “finding the right doctor”… My favorite doctor was Matt Smith!

treatment part 1: antibiotics

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Let’s just have an honest moment, shall we? Disseminated Lyme (Lyme that has been in your system longer than 6 weeks) has no cure at this point, which means that all treatment is essentially experimental. There are people who get significantly better using certain medicines or therapies, but it doesn’t work for everyone (hence no “cure”). Most people who have been sick for 5+ years end up trying MANY forms of treatment, because you never know what will work! There are so many thoughts about treatment out there, and I just want to be up front and tell you that I will only write about the things that I’ve personally tried, and how I felt about it. This will come over the course of several posts, and I’ll rely on readers to comment about other forms of treatment that they like or dislike.

Antibiotics. Oh boy… antibiotics. This is generally the first type of treatment that your doctor will want to try with you. This probably has the best results of any type of treatment, so let’s talk about it:

Antibiotics are tough on your body, especially if you use them long-term, but they can be really helpful. Your doctor wants to use a serious drug because what is happening to you is serious. Make sense? You have to match the level of gravity. Some people see significant improvement to the point of feeling that they are “in remission”, while some people aren’t really sure if it was helpful or not.

My doctor is fantastic, brilliant, and humble. What more could I ask for? Not only that, but she’s highly regarded in the Lyme community, and under her care I was on antibiotics consistently for 2 years and 3 months. I tried at least 20 different antibiotics during this time. It seemed like every time I had an appointment with her, we switched at least one if not two or three of my antibiotics to a different variety. For a while it seemed random to me, but over time, I’ve realized that she’s been smart with her decisions.

Basically, here’s what happens: your doctor is probably going to first try to treat your co-infections (remember, you probably have a cocktail of diseases transmitted through the tick), not necessarily the Lyme. The Lyme is like the center of the onion, and you have to peel back the co-infections first. There are particular antibiotics that work best with each co-infection. However, after a while of being on the antibiotic, that bacteria becomes smart and figures out how to protect itself, which means it’s time for you to switch to another antibiotic that can keep working on killing it. THIS IS WAR, and may I suggest that you view it that way. You have extremely smart, sophisticated, mafia-like bacteria that are in every cell wall of your body, and your doctor is trying to lure them out, and kill them.

I genuinely believe that the antibiotics I took helped reign in certain debilitating symptoms, and I am thrilled by it. Particularly, pre-antibiotics my muscles were so sensitive to the cold and wind, that even in summer I had to be in thick long-sleeve clothes and couldn’t be outside. The slightest wind would make my muscles cramp for days. That’s nearly gone. I’m 98% better with that symptom! My overall pain levels are much decreased as well. I am less often in debilitating pain. STILL—I have other symptoms that have continued to get worse and worse with time. I don’t blame the antibiotics for making me worse. I simply believe that the bacteria keeps wreaking more and more havoc. SO—I believe they helped me to a certain extent, but didn’t take me all the way to “remission” or feeling like my health was at an acceptable quality of life.

There is a lot of controversy over long-term use of antibiotics. I get that. I understand. And whether you do this is really a personal choice. But what I think people don’t fully grasp is that this disease is serious (particularly when it comes to the heart and brain problems that accompany Lyme). While it is generally not life-threatening, it can still completely destroy your quality of life. You don’t want to let it go unchecked, and it’s okay to try things that you never thought you would – including long-term antibiotic use. It’s your decision, and it’s your body. And you have to fight for your future (as well as your family’s future) in the way that you feel you should.

So, the bottom line is that I am still having extreme symptoms. Antibiotics, for me, have not been enough to achieve “good enough” quality of life. I’m still on the hunt, and I’ve got a lot more treatment options to talk about in future posts. Some of the things you can look forward to are: supplements that I’ve used and loved, oxygen therapy, brain remapping (whoa cool!), and more.

Now, that I’ve been a bit more technical and non-personal, I do want to add a very important personal note. — I make a lot of medical decisions (with my husband’s help) after praying about it. As I said, every Lyme treatment is technically experimental, which makes it all the more confusing to know what is the “right” thing to do. My husband and I love the Lord, and seek His help on all of this stuff. We really do feel like we hear from the Lord when we ask for His help, and it gives us the freedom to step forward in faith with different treatment, knowing that I will be okay. Not surprisingly, we feel like we have made the right decisions for us, and that He’s been with us every step of the way. We have peace and comfort when it doesn’t make sense.

There is a lot in Christianity that has been misrepresented throughout the ages, and if you haven’t had good experiences with Christianity, may I just tell you briefly that God’s kingdom is about love, forgiveness, grace, joy, comfort, peace, and hope. He will show up for you if you ask Him to. The God I have a relationship with is faithful, comforting, gracious, kind, and provides for me. Send me a message if you’re interested in hearing more about how you can know God too.

 

so you think you have lyme disease…

I want to start by saying “I’m sorry. I’m so, so sorry.” Unless you’re one of the few and lucky who saw the tick or got the rash, you have probably been symptomatic and undiagnosed or misdiagnosed for a while. First I want to help give some context for why that happens, but then I’m going to give you some suggestions on moving forward. Let’s get started:

Lyme Disease can go untreated for years, as it is easy to miss. This is largely due to three reasons:

  1. Many doctors are unaware that there are Lyme-carrying ticks in their area, so it is never considered in the differential diagnosis.
  2. Many people don’t have the bullseye rash that often accompanies Lyme transmission. In fact, it’s believed that only 50% actually have the rash, and the only other initial symptoms are flu-like. That makes it easy to miss.
  3. You may have been tested for Lyme and received a negative test result, though you actually have it (guess what… The standard Lyme tests are old and were never intended to be used as an individual diagnosis tool. They’ve been proven to give false negatives up to 1/2 of the time).
  4. Lyme Disease affects many systems in the body and has been called “the great imitator”. People diagnosed with MS, Fibromyalgia, Rheumatoid Arthritis, and Lupus often find out later that they actually have Lyme. It’s tricky. And sneaky. And well… it sucks.

If you believe you’ve been sick for more than a month (which puts you in the chronic Lyme category), here are the next steps I would take:

First, fill out this form. It is a list of the most common Lyme symptoms. It allows you to rate the frequency and severity of all of your symptoms. This is a great list to fill out and bring to your doctor, so that he/she knows exactly what you’re dealing with.

Second, go see your family practitioner. Show them your list of symptoms. Ask for them to test you for Lyme. There are two standard tests that you should start with: the ELISA and the Western Blot. Like I said, these tests were not meant to be used for individual diagnosis, so they’re not very reliable. They give false negatives up to 1/2 of the time. If you get a positive test result, huzzah! If you get a negative test result, you may still have Lyme, so don’t give up yet.

Third, now is the time to find an infectious disease doctor. Unfortunately, since there is no cure for Chronic Lyme Disease, all treatment is considered experimental. That means that insurance companies will sanction doctors who treat it, which means you’re going to have a hard time finding a good doctor who both knows how to help you and who can be covered by insurance. After going to many doctors who didn’t know what to do with me, I gave up on the dream and decided to go to a fantastic doctor who wasn’t covered by insurance (worth every penny). The International Lyme and Associated Diseases Society (ILADS) is a reputable organization, and they can help you find a physician in your area. Go to this page for a physician referral.

Fourth, start preparing to see the specialist by keeping a weekly journal of your symptoms. Rate the severity of each symptom on a 1-10 scale. Also, put together your medical history, as well as your family’s medical history, so that your doctor can look for patterns.

Fifth, once you see your specialist, they may recommend getting specialized (non-insurance covered) testing done that is a lot more specific. This would generally be done through Igenex, BioReference Labs, or Molecular Labs. Your doctor should test you for Lyme (yes, again), as well as co-infections. (Lyme is rarely the only disease transmitted by the tick. Most likely, you have a number of other infections that need to be treated before you can even make a dent in Lyme). These tests are crucial. If they don’t bring up the possibility of co-infections, please ask them about it. The co-infections can be just as bad as the Lyme.

Next comes treatment. I’ll talk about that in my next blog post. Feel free to comment with questions or topic ideas below. I’ll do my best to respond!

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lyme 101

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Alright, friends. Let’s talk Lyme.

Lyme Disease is a bacterial infection that you get through a tick bite (or perhaps other blood-sucking insects). Some people develop a bullseye rash, which indicates the presence of infection. They are the lucky ones! The rest of us don’t know that we have it unless we actually see the poppy-seed size tick….OR until we are severely sick.

Lyme is a nasty bacteria that spreads through your blood stream to every cell of your body. The bacteria is a spiral shape, much like a screw, and literally twists itself in through your cell walls, making it extremely difficult to see in standard blood work, as well as extremely difficult to treat. Lyme rarely kills people. Rather, it is like a parasite that wants to suck as much life out of its host as it can without killing it. Pleasant, huh?

Lyme needs to be treated quickly in order to stop the disease from becoming chronic. If caught early, 30 days of antibiotics (such as Doxycycline) should be enough for the person to make a full recovery. Generally, it is thought that the disease disseminates to your whole body after 4-6 weeks. After that point, treatment becomes long, expensive, and often a life-long journey.

For these chronically sick people, symptoms progress slowly until they have dozens of daily trials. Lyme attacks 4 major systems: 1) your bones, joints, and muscles. 2) your digestive system. 3) your heart. 4) your brain. Oy vey. People with Lyme experience a great deal of physical pain and a host of debilitating symptoms (see this list). If you think that you or someone you know has Lyme Disease, please look for my next blog post entitled “So, you think you have Lyme Disease” for tips on how to move forward.

These are the basics. I’m purposefully breaking this into small chunks, so that this can be a step-by-step process. In the future, I’ll talk more about testing, how to find a doctor, treatment, insurance, great books to read, support groups, etc. Feel free to leave comments with questions or topic ideas.