So, what can you expect after being diagnosed with Lyme disease? Whether you recently got bit and caught it early, or you’ve been searching for answers to your failing health for years, this is good news…..Sort of. It’s good because now you have a platform to move forwards and take steps in the right direction towards healing. It won’t be easy, and it won’t happen overnight, but remission IS feasible. This post will share a few things you can expect in the near future and some simple advice to help you along the way.
Find a Lyme Literate Doctor Or Practitioner
First and foremost, Find a Lyme literate Doc (LLMD). It is crucial to have a healthcare professional who understands the complexity of Lyme disease. Herbalists, and naturopaths are good options as well. Go with what you feel is right for you. Find a provider who will look at your complete medical history, monitor all of your symptoms, and your body’s response to treatment. Finding the right doctor or practitioner may take some time and some patience. So, hang in there until you find one that you’re confident in.
Because Lyme disease rarely travels alone, it’s a good idea to test for co-infections. Ticks are often infected with multiple disease causing pathogens that can cause just as much, or more trouble than Lyme disease alone. Co-infections can be challenging to diagnose and testing is expensive. These tests are not 100% accurate, so a clinical diagnosis may be made based on symptoms. For example, my youngest daughter was diagnosed with Bartonella, before it showed up on her lab work. The most common testing for Lyme and co-infections are DNA Connexions https://dnaconnexions.com/, IGenix https://igenex.com/ , and Vibrant Labs https://www.vibrant-wellness.com/tests/tickborne-disease/. These seem to be the most reliable options at this time. There are many co-infections, and a tick can “share” several at one time. Some co-infections include; Babesia, Bartonella, Rocky Mountain Spotted Fever, Powassan Virus, Mycoplasma, STARI, Miyamotoi, and the list goes on…
Get familiar with the many symptoms of Lyme disease and co-infections. The more you arm yourself with information, the better self advocate you can be. Educating yourself can also help lessen the potential for anxiety if/when new symptoms arise. If you begin to notice new or unfamiliar symptoms, inform your doctor. They may be able to adjust your meds or supplements, or add something different to your protocol. Keeping a journal helps document your symptoms, setbacks and improvements.
Symptoms will come and go and vary in intensity. They may change, with new ones showing up and others fading out. There will be good days, bad days, and then there will be worse days. But remember; the bad days will pass, leading you that much closer to more of the better days.
Treatment will not be the same for everyone, as Lyme and co-infections affect each body differently. Even if two people have the same co-infections it may manifest itself differently depending on the body. Most treatments are not covered by insurance, leaving much medical expenses to be out of pocket. There are some resources that offer grants to those with a financial need. Lyme Warrior Foundation http://lymewarrior.us/ and LymeLight Foundation https://lymelightfoundation.org/ are a couple of resources I highly recommend.
The two most common choices for treatment are antibiotics and herbals, and there are many different options for each of these. Research and learn as much as you can about your options and speak with your doctor about what’s right for you. Treatment is often essentially experimental. The goal is to find the right treatment that works for your body. Be patient. The journey to healing is long and there will be setbacks along the way. But there will be victories too!
Alternative treatments are also available. Many can even be added to the protocol your doc puts you on. Again, research and know your options. Ask for feedback from other Lyme patients and communicate well with your doctor. There are too many to list them all, but here are some of the alternative treatment options;
Infrared sauna, detoxification treatments, Acupuncture, Hyperthermia, RIFE machine, Hyperbaric oxygen therapy, Ozone therapy, Magnetic therapy and bee venom therapy. Make sure you consult your doctor before trying anything new! You most likely will feel worse before you feel better. Remember, this is normal and it is ok. Stay strong and keep motivated.
Family and Friends
Family and friends will probably ask you why you aren’t getting better after a few months of treatment. They may even question your treatment options. This one’s hard. Throughout our lives we get sick, take some medicine and rest… and boom! We get better and are back in business. Well, Lyme is more complicated than that. It’s not so simple. So, your loved one’s may have a hard time understanding why your still sick. This is a difficult concept to grasp for most people. Don’t let it get you down. Keep your chin up and focus on your healing. Try offering them resources to help them learn more about your disease. Some loved one’s will not go out of their way to do the extra reading, but you’d be surprised that some people really want to know what your up against.
Lyme Will Test You
Your life is most likely about to change in a very big way- if it hasn’t already. It may affect your job, relationships, and shake up your sense of “normal”. It will test you physically, emotionally, and spiritually.
Your sleep patterns will most likely change and you may develop depression and/or anxiety. Although these aren’t fun elements, they are normal, and can be expected. Lyme and some co-infections can be in your head. Literally. When spirochetes (the devious little, spiral shaped bacteria, living in us) take up residency in the brain it can cause all kinds of problems. Both cognitively and psychiatrically. So, when you hear someone trying to help by saying “just choose joy”, smile and try not to kill them for their ignorance.
Most people will not understand what your brain and body are going through. Lyme is called an “invisible disease” for a reason. Much of our symptoms are unseen by others. The fatigue, brain fog, muscle and joint pain etc, are hard to explain and the severity is grossly misunderstood. But don’t let that discourage you. Staying positive is crucial for the process of coping with your diagnosis. You may also experience the “loss of your old self” and will mourn the person you used to be. You are not, and can not be that person anymore. However, the good news is you are growing into a fighter. You will begin to develop a strength within you that you never thought possible.
I have learned that most warriors, including myself, become more resilient, more compassionate, and have grown to be more understanding of others. Somehow, we find ourselves on a much deeper level. So, even though the journey is long, and at times treacherous, there is so much room for personal growth.
Freindships will change
Not only is your body changing, but friendships will change, morph, or even dissolve. Maintaining friendships can be a challenge when you’re chronically sick. You may find it harder to participate in social events or date nights. Most people will not be able to relate to what you are going through. Your afflictions may be dismissed, because you “look fine” and are able to get out and about occasionally. This makes it hard for people to understand, or worse, believe in your illness. Even though this is a difficult part of the journey, you will learn pretty quick who your genuine friends are.
Whatever happens, whatever friendships are lost, or get pushed to the wayside, know this; It is going to be ok. As you move and progress in your journey you will make new, real, and stronger relationships.
Hopefully, you have a little better idea of what to expect after being diagnosed with Lyme disease. I’ve added some advice that I wish I would have been given, before having to figure it all out on my own. I hope it helps you along your pilgrimage to health.
Find support groups either online or in person- or both! Connecting with other Lymies is a lifesaver. You’ll hear the phrase, “nobody gets it, till they get it”. It’s true…. and honestly, we really don’t want them to get, ya know what I mean? Only those afflicted with Lyme disease know the struggles, the ups and downs, and the endless list of grueling symptoms. They know because they live it too. So, it’s great to have others to talk to who “get it”.
Listen to your body
Learn to listen to your body’s needs. If it’s telling you to rest, then rest. Don’t over do it on your good days! This, unfortunately, you will most likely learn the hard way. When we finally have a good day, we feel like we can conquer the world… or at least the long checklist of things to do that’s been collecting dust. Despite how good you feel, your body will most likely protest the next day. So, be cautious and know your limits. Overdoing it could cause you to go into a flair that could last for days or even weeks. These are setbacks you can avoid.
Detoxing is an important responsibility throughout your healing journey. It encourages the body to flush out toxins, reduces muscle and joint inflammation, and also reduces herx reactions. A herx reaction is when bacteria are killed off during treatment, resulting in exaggerated fatigue and worsened symptoms. You can learn more about detoxing here https://chronicallyimperfect.com/detoxing-to-help-heal-from-lyme-disease/ or http://lymewarrior.us/lyme-warrior-blog/2020/5/20/detox-methods-for-lyme-disease. Remember to consult your doc about the best ways to detox for your body.
Eating clean is very important. Consider eliminating processed foods, gluten, dairy, and sugar. These are inflammatory foods. Sugar also feeds the Lyme bacteria and suppresses the immune system. Neither of those are ideal. Your doctor can help you design a food plan that is fitting for you.
Keep moving. Low impact exercise, like using dumbbells, stretching, and walking, are optimal. You need to keep your blood moving, and encourage muscle strength. Do what you are comfortable with, but try not to stay stagnant. Even if you are stuck in bed, move your arms around and bend and straighten your legs throughout the day. Anything helps. Remember not to overdo it on your goods days though!
Stay positive. I know this is not always easy. Trust me, I know. Depression can be a tricky little devil. But, you certainly can’t get into the habit of convincing yourself you are doomed. It’s amazing what a difference a positive outlook can have on your treatment. Pray, meditate, or practice breathing exercises. Establish a daily spiritual practice, whatever that may look like for you. You’d be surprised how much it can aid in coping and personal growth through this long and challenging ride to remission.
You are not alone!
Know that you are not alone! Lyme can seem so lonely and isolating; Like you’re treading water, barely keeping your eyes above the waves, with no land in sight, and no one to throw you a liferaft. It may feel this way from time to time, but it is not true. Fight through these trying moments and know that they end. It’s just a storm. And there’s always a fresh light after it’s over. We are all in this fight together. We can support each other and pick each other up when we’re down. I have learned over the last couple of years, that the Lyme community is astonishingly strong. Just reach out.
This post is dedicated to my sweet baby girl. Our doctor called last night with the lab results confirming my 10 year old, Audra, has late stage Lyme disease and Bartonella. Even though my mom radar has been going off for months, the officialness of it stings. It breaks my heart to see both my girls afflicted with this disease. Despite the upsetting news, I know God will see us through all of this. He is “a lamp unto my feet, and a light unto path” Psalm 119:105
- International Lyme And Associated Disease Society (ILADS) – Doctor Search
- LymeDisease.org – Find Lyme-Literate Doctors
- Global Lyme Alliance – Find a Lyme-Literate Medical Professional
- Lyme Disease Foundation – Doctor Referral