Self Care For Lyme Disease & Chronic Illness

A little over a year and a half ago I was diagnosed with Lyme Disease. I was having all sorts of symptoms that were unexplainable and my doctor was unable to figure out what was actually going on with my body. I had been battling insomnia for 8 years at that time and I actually thought the symptoms that kept popping up were manifesting from lack of sleep. I began to slur my speech, had swollen joints in my feet and hip pain, rashes, shortness of breath, the feeling of needing to urinate and then nothing happening, memory problems, dizziness, disorientation, and severe depression. The depression had worried me the most because I knew I was someone who has struggled with depression my entire life, but I had never been so depressed like I was 2 years ago. I remember calling my parents, scared that I was going to actually hurt myself. It was then, and hearing the words come out of my mouth, that I knew I really needed help. I distinctly remember asking a friend, who is a healthcare provider, if someone could die of insomnia. I felt old and run down, I literally thought I was dying. The confusing part for me is that I had always taken care of myself. I was active, had eaten organic foods for over 10 years, received acupuncture, massage, and chiropractic work regularly, and was a yoga practitioner. It just didn't add up to me.
It still took some time, and many tests later, to discover I had Lyme Disease. When I got the diagnosis it was relieving and scary at the same time. I can tell you that I looked at those test results every day for over a year. Sometimes I still pull them out to make sure I was diagnosed correctly. I was tested twice actually and both times it was positive. I also tested positive for Babesia and Bartonella, and had been exposed to other co-infections in the past that lie dormant in my system and are triggered when my immune system is low.
I wanted to share my story, so that you know I can relate. I can relate to the confusion of getting a diagnosis, of constantly googling (which I do NOT recommend due to a lot of mis-information out there), the loneliness and depression you experience from not having energy to be in the world and live a normal and active life, and the myriad of modalities and things you are told to do, or not to do, or told to try from everyone around you and the practitioners you see. I mean, I even had my dentist offer me the "best advice" because of an article he read. Boundaries are VERY important when you share you have a disease because everyone wants to help! The pain, people not sure of what to say or not even acknowledging you have a disease because you "look great, or you look normal", the tiredness and feelings of hopelessness. I can relate to it all. I cannot relate to those who have it worse than me and those I pray for and think of when I'm feeling pretty crappy. My heart goes out to those with this disease that are handicapped due to its affects and I urge you to chime in and post what has helped you if you feel called.
I will start off by saying, there are a TON of treatments and ways to go about treatment, so do your research. Especially if you live in the Seattle region. We are very fortunate to have so many lyme literate doctors in the area. This is a good and bad thing because some of the treatments are very experimental, expensive, and unnecessary. You have to do what feels right for you and know that this is a process. There is no quick fix. Whether its Lyme, Hashimoto's, or Fibromyalgia, it is a process to heal your body and take care of yourself. Give yourself time and please don't push things thinking you will hurry up the process because you will make yourself even more sick. Trust me, I've learned the hard way!
But, this isn't about what treatment is right or wrong or what works the best. This is about the extra care and attention we have to give our bodies. Most doctors are trying to pack all they can into an hour session with you and are focused most on your lyme treatment. They don't really have time to tell you how to care for yourself. This is what I am sharing. SELF CARE! Its pertinent to the healing process. And please reach out if you have any questions, not only to me but to others who have lyme. Ask those who have lyme to share what works for them and what doesn't.
First stop is to get a team of practitioners to help you. I will use myself as an example. My team consists of: My lyme literate naturopath, acupuncturist, massage therapist, craniosacral therapist, chiropractor, psychotherapist, nutritionist, and allergist. Yep, its a lot but we need a lot and like I said my doctor only has so much time to be with me. Self care is expensive, but you are worth it. And its worth it to nourish your body and feel good as much as you can during this time. Let's move onto whole body self care!
The emotional/psychological body. The first realization I had after my diagnosis was that this was really a lesson in self love. I had always been very hard on myself, talking down to myself, saying things to myself I would NEVER say to another person. And I realized, that had to stop. It was now time to really care for the body I was gifted with. To really love her and where she was IN THAT/THIS MOMENT. Every hurt, every ache, every feeling of depression and loneliness, all of the cloudy weird feelings, and the times of endless crying. I needed to love all of that and boy it was/is that hard. I finally came to a point, I would say after about a year of being in treatment and pain, that I had to stop complaining about my life and be extremely grateful for all of what I was/am experiencing. I mean, I was miserable! Even before my diagnosis. I had to accept where I was and honor it. Honor all of the misery and love it. So easier said than done, but the interesting thing is, I read in Louise Hay's book, Loving Yourself To Great Health, where she says all autoimmune disorders are about loving yourself. Think about it, if you are constantly telling yourself you suck, your life sucks because you are sick and I don't feel good, I don't feel like doing anything, nobody likes me because I'm boring or sick, I don't like me, etc. You are telling every cell in your body the same! You are feeding yourself these words, so of course your body is going to turn against its self. You are attacking yourself with your negative thoughts and so of course your body is going to start attack its self back! Let that sink in for a moment......
So, I'm going to ask you to do something so new-agy and ridiculous. I have always been one to question this stuff, even after years of studying mind body medicine and spirituality, but it seriously works and it took me getting sick to really believe it. Stop attacking yourself and start feeding yourself loving thoughts. The way you do this is by changing the story in your mind. Every time your hear yourself say "Man, my life sucks today. I hurt, I'm tired, I can't eat whatever I want", etc. stop yourself and change the story. Quickly turn it into "Today is awesome because I woke up! I am eating healthy food and I get to have a massage and take an epsom salt bath and I feel grateful for those things. I can walk and breathe" Practice, practice, practice changing your thoughts and your body will start to change. Fill every cell of your being with healthy thoughts and you will start to feel better. And if your mind keeps going in circles and feels confused, which happens a lot with Lyme, start a sitting practice. Meditation changes everything and get you into your heart instead of swirling around in your head!
Lastly, get out of victim mode and into your heart and be grateful. I believe in not always talking about your illness, or not feeding into it. I'm not saying repress your feelings and emotions and not tell anyone. I'm saying every time someone asks how you are, you don't have to say "I'm miserable. This lyme sucks, lyme this, lyme that. I have lyme I can't eat that. I have celiac I can't have that, etc." Instead say, "I'm grateful, or I'm managing, or today is hard and its ok. I'm healing...". Change your words because words become mantras and mantras create our reality. DON'T BE THE VICTIM, BE THE INSPIRATION FOR YOUR SELF.
OK, one more important thing. See a psychotherapist. Period. When you have lyme, it is harder to control your emotions and when you get upset, or something triggers you, your body has a harder time processing emotions. All of us express emotions through the body, but with lyme we are more sensitive and we are more vulnerable to confusion. Sometimes I wonder if I am thinking clearly, or making the right decisions. I also notice that when I get upset, it feels so overwhelming that I shut down and my neck starts throbbing. The emotions get stuck! It helps to talk to someone and process the things that come up. Actually, lyme or no lyme, it helps to process things. And things will come up!
The Body: Our body needs serious luvin' when we are detoxing from Lyme. When all of those little bacteria-parasitic like buggars start dying off we feel like complete ass. Because they are all dying off and floating around our lymph system and become exotoxins, meaning toxins that release into the surrounding environment after the bacteria die off. I also feel, although there is no proof of this from what I read, that lyme is a neurotoxin. I feel that what I experience when I am herxing is a lot of die off directly affecting my nervous system. Anyway, these exotoxins have to get out of our body. Most of us will develop skin issues like itchy skin and acne, or constipation because the system is overloaded. Its the toxins trying to exit the body. How do we get them out? Well, our digestive system is a good start! Healthy bowel movements are key and with dysfunctions in the immune system, our gut usually takes the hit. Ask your healthcare provider to check in with your digestion, make sure you take a good probiotic and start to up your fiber & fermented foods.
I have heard from several practitioners that if our digestive system is struggling, our bodies cannot heal. For myself, I found out I have candida on top of everything else. Probably due to the 7-8 months of antibiotics I took in the beginning. I have to kill off the candida before my gut can heal. Fermented foods, kefir, probiotics, no sugar have all helped me tremendously.
If you don't have a good bowel movement at least once a day, give yourself an enema. Coffee enemas are great for stimulating the liver, which in turn naturally produces glutathione, which helps with brain function and depression. They are detoxifying, kill parasites and candida, cleans and heals the colon, helps stimulate and detox the live allowing your body to handle die off reactions and herxheimer reactions. And, if your digestion is really struggling and if you are extremely constipated, colonics are amazing! I love colonics because they clear the entire large intestines, where enemas only clear the descending portion of the large intestines. It helps clear up skin issues, gets rid of all of the backed up toxins in your gut, clears your thinking, and just feels relieving.
The Lymphatic System: KEEP YOUR LYMPH CLEAN AND CLEAR! Why is this important? I would check out my previous blog the-importance-of-caring-for-our-lymphatic-system.html for a more in depth explanation, but for now..... our lymph system is our immune system. When we are fighting inflammation caused by lyme and detoxification, our lymph system gets overwhelmed and overburdened by how much work it is doing. We start to feel sluggish, brain fog increases, we ache all over (for me it feels like a traveling aches throughout my legs), its hard to manage emotions, and we just feel toxic. OUR BODY CANNOT HEAL IF OUR LYMPH SYSTEM IS NOT WORKING PROPERLY. How do we clear the lymph? Dry skin brushing is a good start. I was doing this once a day for a long time and it really helps when the skin on my face breaks out. Manual lymph drainage techniques are also a great way to get the lymph moving along. What I highly recommend is the electro-lymphatic therapy that I offer. It penetrates deeper, up to 8 inches, and is AMAZING for clearing out the lymph in the brain that leaves us feeling bogged down mentally and emotionally. For me, it has been a god send! Specifically with the pain I experience in my neck from backed up lymph and the tenderness I feel in my head. Its also worked miracles when I was detoxing too quickly from intense treatments and my entire system almost shut down. My abdomen was extremely congested during this time and it helped with moving things along in my digestive system and cleared the inflammation. Visit my web page on Electro-Lymphatic to learn about this amazing machine and if you can, find someone who has been trained on the machine. I couldn't recommend it enough!
Connection to a higher power and prayer: Do you pray? Are you grateful? A connection to something much larger than we are is important to all of our wellbeing. Trusting that we are being taken care of and that things always work out directly effects the state of our health. Having gratitude in times of darkness has saved me hundreds of times. I don't think I could have made it as far as I have without my spiritual practice and my beliefs. Just thanking great spirit that I am alive and for all I am learning through this gives me hope. And giving thanks that I am healing and whole helps a lot as well. Believing in some-thing gives us hope, restores our faith, and allows grace to fill our lives. Prayer helps to relieve the mental suffering that can bog us down and reminds us of all we have to be grateful for.
Eliminate sugar and eat whole foods! Yes, we all know, eating properly is key to feeling good. BUT, did you know that lyme and other bacteria, including parasites, feed off of sugar?? This one took me a long while to figure out. I would still enjoy a few drinks a week and on weeks where I felt pretty down, it was more than a few drinks. It took me until a month ago, after having 2 small glasses of wine at a friends birthday party and being hungover for 3 days, that I realized its actually causing me more harm than good to have even just one drink. The hangovers are brutal when you have lyme! Even after one drink, our tolerance is pretty low. Why? According to Dr. Murakami of Canada "Most alcoholic drinks have sugar and wheat and ingredients that spirochetes (lyme) eat. So they all come out and go into an eating frenzy. When they are active like this they put out toxins. Well these toxins make us feel “drunk” quickly. Then when the alcohol hits your blood stream, it kills the spirochetes. Thus giving off the toxins from the dying lyme. So we have a herx reaction. The reason it is so bad, our bodies are working double time trying to break down the alochol and detox the dead bacteria. This is extra bad because alcohol crosses the blood brain barrier and our bodies are not equipped to detox the toxins in our brain. So it pretty much explains why we get drunk so fast then have such a bad hangover the next day." In other words, stay away from alcohol!
And sugar.... even eating a lot of fruit can be a bad thing. My thing has been "healthy sugar" like dates, fruits, honey, etc. I've stayed away from processed sugar for many years, but not really payed attention to how much sugar I've been eating. If I eat a Larabar, some chocolate, honey in coffee, added sugars in the prepared food from the coop I frequent, and a kombucha (yes it contains processed sugar!) that is a ton of sugar in one day! And this is what I was doing all the while thinking it was ok because it is "natural" sugar. Sugar is sugar and while natural sugars are far better than processed, its still being fed on by all the bad things in your body. Once again, it took me that same night I had my 2 small glasses of wine, followed by some birthday cake and honey glazed almonds, to realize sugar is a no go! I've been sugar free for a month and I can tell you I don't feel as much brain fog and my neck pain has decreased and my stomach pain has subsided ( all signs of inflammation).
As far as what you eat, try the paleo route. Eliminate the common food allergens wheat, dairy, soy, & corn first then try to eliminate most grains. Even the gluten free ones! This takes time and patience. I know when we don't feel good we don't feel like making our own food. Trust me, I get it! I lived off of the prepared food from my coop for over a year and am just realizing that one: cooking makes me happy! And two: I love knowing that what is going into my body is making her feel good! Cook as much as you can and eat as pure as you can. It's exhausting to have to be diligent about food, but trust me, its sooooo worth it! I've gone to my friend Karen who is an amazing nutritionist for help in seeing what needed to shift in my diet. She uses functional medicine, which I highly recommend, to see where your body is needing help in regards to blood sugar and what foods are good and bad for you. Hire a nutritionist to help you!
Other self care practices to keep you sane and help with pain and inflammation.
*Chiropractic care helps tremendously! I cannot stress this enough, especially if you have intense neck pain like I do. Our nervous system is directly affected by lyme, causing stress to our entire system. For some reason, our spine does not stay in alignment and going to the chiropractor helps alleviate the pain. I also highly recommend CranioSacral to help calm the nervous system. I love this! Its so soothing and helps me sleep!
*Acupuncture- again for pain management and keeping our body in balance and the energy body grounded. I love acupuncture, it helps feel sane!
*Massage- Again, pain relief. Also good to find a practitioner, like myself, who specializes in Maya Abdominal Massage if you have any inflammation in the gut, or reproductive issues. This type of massage helps to increase the function of the organs, eases the pain caused by inflammation, and can help with pain and motility.
*Infrared Sauna~ This heats the body from the inside out, allowing for deeper detoxification to happen. It detoxes all of the organs, purifies, relaxes, and increases circulation. All important when detoxing from lyme and co-infections.
*Yoga and other gentle forms of exercise- I'm not talking about a crazy vinyasa class. I'm talking about Yin yoga, or other forms of gentle yoga. Sound baths, meditation, things that move slowly. I used to hike the mountains in Boulder or go for a jog and then do yoga. These days, I'm happy if I get out for a good walk for 30 minutes. Is it still hard for me to accept this? YOU BET! I still do what I always did and plan in my mind, the night before, that I'm going to get up at 5am and go for jog all before I hit yoga and then go to work. I'm lucky if I'm out of bed before 8 and get out for a walk, or make it to yoga! It's frustrating, but its more important to listen to your body. My favorite yoga in Seattle in The Hatha Yoga Center. They have been teaching for almost 40 years and are amazing!
*Sleep & Rest- If you have lyme you either get too much sleep, or you have insomnia. For me, its been 9 years of not sleeping. I've tried everything under the sun and what I can tell you is that I have one thing that has worked for me. Kavinace Ultra PM by Neuroscience. It's expensive, but it works amazingly well and has helped a lot of people I know who struggle with insomnia. Take naps if you need to and if you do sleep a lot, just keep sleeping and know that I, along with all of us other insomniacs, are envious :) REST!
*Epsom salt baths- these are detoxing and help with muscle cramps that happen with lyme due to a lack of minerals in the body. It also helps with the tight muscles and muscular discomfort. It more powerful than taking magnesium internally because the muscles soak it right up! I use either a full 1 pound bag, or 1/2 of the pound. Just be sure to shower off after your bath and drink plenty of water. It is salt after all and will keep soaking up the moisture in your body.
*Vitamins and minerals- This is where functional medicine really helps! Our bodies are lacking the proper nutrients it needs, so supplementing where we are lacking is very important. Talk to a healthcare provider to see where your body needs extra help. Most of us suffering from lyme are low in minerals, need extra vitamin C and B vitamins. Find a practitioner who does muscle testing to see what your body wants, don't just run out and buy a bunch of supplements!
*Dental health is a must- Before I was diagnosed, I noticed my breath started to smell bad and my gums began to look worse than usual. I couldn't figure it out. I found out that lyme is a bacteria that loves to feed off of decay. If there are any infections in the gums, or old root canals, the spirochetes will hunker down and live in these areas. Find a holistic dentist who is familiar with lyme disease. Himalayan Botanique makes a great toothpaste with Neem & Pomegranate (there are studies that show neem kills lyme). Also, floss regularly if you don't already.
*Time in Nature- its soothing for the nervous system and great to get fresh air and sunshine. The sun is also a wonderful healing agent, and its free! There have been times when all I can do is walk around the block, but I've made myself. You have to get fresh air, you have to see the sky and hear natural sounds. Intrinsically, there is something inside of us that knows this is where we came from and this will heal us.
The most important thing is to take care of your mind, body, and spirit during this time and it can be a full time job! I have spent thousands of dollars in self care over the past year and a half, even before when I wasn't feeling good. You only have one body, so invest in feeling better and you will get better. Feed your mind and body loving thoughts, REST (big time), and be patient. This is not about pushing through to feel better. Don't go out running anymore if you are a runner. Walk! Take gentle yoga classes instead of intense vinyasa classes. Lyme is a disease that causes you to slow down, so listen and be slow. Allow your body to heal! And love yourself because you deserve it....