Suggestions for Those Who Have Just Been Diagnosed With Lyme Disease
When I first got my Lyme diagnosis, I was excited and eager to start treating, but also scared for what was ahead of me. Seeing the other patients that surrounded me and reading other people’s experiences online left me feeling overwhelmed. As someone who has four years of treatment behind me, I wanted to share what I have learned over the years. I created this simple list for anyone new to treatment who is feeling a little lost and intimidated.
Try not to compare. Everyone has a different life story than you. Although you share the same condition, you do not share the same treatment. Lyme is different for everyone. It effects each and every one of us differently. The only thing comparing will do is set you back in your own healing journey.
Let other people help you. It is challenging to ask for help when you need things done at a specific time and way, especially when you have very little energy to explain why. Honestly, you never need to explain yourself. Remind others that you need things done in a specific way and although you know it can never get done exactly as you would have done it, you need it to be done almost as well. Although this can be frustrating to do, try to approach it from a place of kindness and confidence.
Be kind to yourself. You are a brave and capable human. Your body is a magnificent masterpiece and you can do this. Try not to beat yourself up.
Be open-minded to treatment. There are countless ways to treat this disease. Herbals for some, Rife machines, IV antibiotics, ozone or all of them combined. Those are just a few of the options. Try to focus on what works for you. Try to listen to what your doctor suggests with an open mind. There are always options.
Focus on a few things at a time. This one was very complicated for me to learn. With treating so many co-infections, viruses, hormonal imbalances and toxicities from being undiagnosed for so long, I had to zone in on one or two things at a time. This meant letting other things go for the time being and dealing with the symptoms every day. It is similar to cleaning a room from top to bottom – the more you get closer to the ground, the cleaner the top of the room is. Just do one thing at a time. In time things will start to get checked off, one by one.
Research. Research. Research. Doctors are human beings. Doctors also see about 10 of you in one day. They are also learning new things every day about this disease. As much as we would love a one-on-one experience with our doctors, we also need to make sure to be checking our labs, the medications we are on and how to take them properly. Making sure that medications do not interact with other medications and supplements. Research what time of the day to take them. You want to get the best out of each thing you are taking. You also want it to be the easiest it can be on your body.
Keep a journal. This is crucial. Write down how you feel briefly every day. Make a range from one to 10 of your pain or symptoms and keep track of when they flare. It is easy to forget on good days how we felt the day before. It is human nature to pick yourself up and brush it off. Lyme and co-infections are cyclic and symptoms come and go. It is very important to document how you are feeling.
Take notes into appointments with you. Often, there is limited time to spend with your doctor so make sure to put the most important at the top of that list and the things that can wait or that may be answered within the other questions at the bottom. Remember, you are paying for time with the doctor, so make the best of it. If this is not possible, at least bring a pen and paper with you into your appointment.
Take someone along with you to appointments. A partner, a parent, a friend or relative. If you have no one, maybe join a local support group either online or in person and mention you need someone to attend an appointment with you. It is hard to remember everything yourself and it is also great to have someone with you who can see the appointment from their own view. They can offer suggestions and help mention things you may have missed.
Take water and snacks with you to appointments. You will most likely be traveling or spending a good amount of time with each office visit. You may also need labs done or have to wait. It is great to be prepared. I worked as a nanny before I was diagnosed, so I treated myself like a 5-year-old when I would have office visits. Take something to read, snacks, ear plugs if you have sound sensitivity and a blanket for the car if it is cold outside. Baby yourself, you deserve it. If you are too ill to do any of these things, make a list for a friend or a caregiver of what you may need.
There is no time limit to healing. Treating takes time. It takes as long as it needs to. Our bodies do not know we have a wedding in six months or a timeline when we want to get married or have children. The easier treatment will be, the more you can just let go. This is not easy, but from my experience, it is crucial to healing. You and your body do not need the added stress. Try reminding friends and family of this too. Often people want to know what is next or how long it will take. It is easier just to say “as long as it needs to.”
People are not mind readers. As sick as you may feel on the inside, unless you tell someone you are not feeling very well that day, they may never know. It is easy to assume you look as bad as you feel, but other people have a lot going on in their own lives. Communication is key. Others will appreciate your openness as much as you do them honoring how you are feeling. Also remember, sometimes others may simply not understand, and that is OK too.
This is the most important. The one thing that has been the most beneficial to me through treatment. It is simple and key. Keep the people you surround yourself with positive. Do not let anyone drag you down or pull you into any negative thinking. You have the power to keep your environment positive and inspiring. It is OK to step back from certain things that bring you down, but try not to isolate yourself. Keep people around you that support you fully even if they cannot understand. If it does not feel good, find something that does. Keep yourself happy and remind yourself every day, I will get better. It is easy to say I want to get better or I wish I could, but seed your thoughts with phrases like I can get better and I am healthy.
I wish the best to anyone going through treatment of Lyme disease or any other chronic illness. I hope these suggestions I learned throughout my journey can help someone who is just beginning their own. Treatment is quite the experience and the more prepared you are, the easier and successful your experience will be. You can do this. I wish you the best of luck!
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Thinkstock photo via Archv.