It has been such a struggle for me to write this. There’s so much to say… I think I would be best served to just write a book because this post may be way too long for a blog and I might lose a lot of readers halfway through… But, for those of you who bear with me to the end, I want to thank you for reading. So much needs to be done for Lyme Disease awareness and education. I’m trying to do my part. It’s very difficult and emotional to talk about, so I’ve done my best here for now…
For me, Lyme disease hasn’t been a moment in time where I might I recall getting bit by a tick, or seeing a bulls-eye rash… for me, it’s been quite the opposite of a moment. Rather, it has been an endless series of grueling moments of pain, slow realizations of debilitating terror, and shape-shifting never-ending symptoms that continue to elude many of the sharpest and well-respected practitioners in the country. Oh, and absolutely none of this is covered by any insurance, either.
Starting at the “beginning” is hard to do in a situation like this, where you’ve been miles down the path well before you even knew the path existed. I recognized for sure that something was very wrong one February evening in 2016 after I had just finished a workout that seemed much more difficult for me than usual. I had been in recovery and remission from autoimmune hepatitis (not a viral form, it’s chronic inflammation of the liver) for about 6 months at that moment, and was working hard to reclaim my health, body, and life. I had been diagnosed with the autoimmune disease 6 years prior when I went completely jaundice one day with no explanation. I had been unwell for a while prior to that day, but I was young and didn’t know that what I was feeling wasn’t normal, because honestly I’d felt unwell for years. So when I was diagnosed with the autoimmune disease, I went on a strong cocktail of corticosteroids (Prednisone) and immunosuppressants for 6 years. Steroids are supposed to help bring down inflammation, and the immunosuppressants suppressed my immune system, weakening it so my body would “stop attacking itself”. After five and a half years of this cocktail not working, my specialists gave up and told me I would have to go on the liver transplant list. It was then that I took things into my own hands and started the autoimmune paleo diet and an all natural supplement protocol that got my liver disease into remission in less than 6 months! So, I started to wean off of the steroids at that time, and thought I was getting my life back. However, that’s when things got really ugly. I slowly started to notice I was more and more fatigued. My liver remained in remission, but everything else got much, much worse! I kept on pushing, trying to work out and battle through… Which then brings us back to February 2016 after that particularly rough workout.
That night, as I made dinner I noticed a heavy feeling start to creep over my body, like I was coming down with something, HARD. It continued to get heavier and heavier and was so overwhelming that I was crying out in pain! I couldn’t lift my fork to my mouth, or carry my plate. My muscles were at complete failure. My body felt like I was wearing a lead suit it was so heavy. I felt like my eyes were about to pop out of my skull. I had a constant fever for weeks. I had never felt so sick or weak in my life! Something was seriously wrong. I tried to tell myself that maybe it was just the flu or mono. After a few days I went to the Dr and he couldn’t find anything wrong in my blood work or x-rays. As time continued, my body crashed even harder!
The first several months of trying to figure out what was going on were horrifying. I was in so much pain, and was so weak, I could barely walk across the room without falling over. The pain in my head was like someone had taken my skull and slammed it off of a cement curb. It throbbed and ached morning to night. I felt like I was carrying around a 100 lb lead ball on my neck. The pain shot down my neck and my shoulders, into my back. I had joint pain that ached and radiated so deeply in my knees, hips, elbows, hands, and wrists that I would sometimes scream and cry. Little did I know this pain would follow me for years to come. My muscles ached so badly. The smallest amounts of movement like chewing would cause so much pain. I couldn’t sleep. I would go to bed and lie awake for hours maybe catching a few minutes here and there but never into a deep state. Every couple of hours I would crash even harder, not able to get up or move about as I wished. I couldn’t read. My mind couldn’t keep up to make sense of an entire sentence. By the time I reached the middle of the sentence I had forgotten the first few words completely. I couldn’t follow the story line of TV shows or movies. My husband took me to see The Book of Mormon and I can’t for the life of me tell you what that show is about! 🙁 Everything was like sensory overload! Music was too loud, lights were too bright, smells were overpowering. All I could hear was noise and it made me extremely anxious and nervous, I just wanted to scream! The smallest unexpected noise would send me over the edge! I couldn’t recover from being startled in the slightest. I had to stop watching suspenseful TV and exciting movies. I couldn’t have stressful or emotional conversations without intense physical reactions. My head and my heart would pound so hard, it was so loud inside of my body. I also couldn’t find my words. It was like my vocabulary had been deleted from my memory. I felt like I had lost complete control over every part of my body. We were trying to look at new houses at the time. Sometimes I couldn’t look at more than one. I would walk through the house, sometimes not even making it upstairs and be so completely wiped out that we would have to drive straight home. I got scooters at stores because I couldn’t walk the aisles without fainting. And nobody seemed to have a clue as to WHY.
My PCP told me he thought it was my thyroid. I knew better. This was much more than my thyroid. But I couldn’t seem to get any Dr to listen to me. All my tests kept coming back normal to them. I went to an endocrinologist specialist, who couldn’t tell me anything either, except that I was slightly hypothyroid and that that shouldn’t be causing all of these symptoms. People would look at me and think I looked perfectly fine! Newsflash! You can’t see inside someone’s body! I spent years masking how I felt inside, so it’s no wonder you couldn’t see it on the outside! Plus, a little bit of concealer, bronzer, blush, and mascara, and who doesn’t look normal? I’m not a loud or overly expressive person. I’m pretty quiet, polite, and sometimes timid. None of the doctors I went to in my health insurance network could pinpoint anything. So, I moved on. I finally found a whole team of like-minded people in functional medicine, integrative medicine, holistic naturopaths, chinese herbalists, and chiropractors who helped diagnose me with Lyme Disease and extreme adrenal fatigue. Along the way, these natural health practitioners have found so many other issues going on in my body that are causing problems. It was such a relief to find answers! I felt like someone was finally telling me, “No! You’re not going completely insane! Something really is wrong with you!” Sometimes just hearing that I wasn’t crazy would bring me to tears, let alone the fear of the diagnosis itself. The natural health care field goes above and beyond to find what most conventional doctors do not. They really dig deep to find the root cause of the issues instead of treating the body like individual compartments that need repair. I realize that this might not be the fault of Western medicine doctors because they aren’t trained to look for Lyme Disease or root causes of illness in this way and that in-depth testing of this sort isn’t in their standard procedure. But, for so long now conventional medicine has completely missed the boat for me and for so many friends, friends of friends, family members & others I connect with through support groups. I really wish the practices would change to help more people find the causes of their problems… I’ll share more on that in another post. (See my post – “Why I Choose Holistic Medicine – How I Healed From Autoimmune Disease Naturally” here)
Chronic Lyme disease is very difficult to diagnose and to treat. Once it has been in your system for a while, it more often than not does not show up in the usual blood tests. If you have had it for a long time, your immune system becomes so suppressed that your body can’t make the antibodies that would show up on the blood test. It also hides in your organs, and forms something called a biofilm that is a protective shield around it that antibiotics cannot penetrate. So, just taking the antibiotic like most people do when they first get bit does not work for someone who has had it in their system for a longer period of time. I know so many people who have tried many rounds of antibiotics for their Lyme and are still so sick and now have damaged their gut and immune system so much. My Lyme Dr says that if you catch it within three weeks and take the antibiotic, that it will kill the borellia. But, if it is in your system longer than 3 weeks, it has gone into it’s second stage where it forms the biofilm and becomes chronic. That’s when you are in big trouble. You may not have severe symptoms or any symptoms at all sometimes for many years. But, when your immune system is weakened, for several different kinds of reasons, the disease will activate and spread. So, when I was on the medications for my liver to decrease my immune system, the Lyme disease was only getting stronger. But, the steroids I was taking were masking many of those symptoms because they pump you up and give you energy and reduce inflammation! So, the entire time I was taking those drugs that never helped my liver, they were hurting my immune system and making the underlying cause of the autoimmune disease, the Lyme, even worse!
I never remember seeing a rash or a tick. Less than half of the people who get Lyme disease see a rash. Don’t depend on seeing a rash to determine whether or not you may have Lyme. But, when I think back to my childhood, I remember that around age 12 I was having bad pain in my knees and really struggling in dance classes. The Dr said it was growing pains or Osgood Schlatter disease. Thing is, that pain never went away, I just got used to having it. In fact, it got worse in high school when I had a job at Osh Kosh B’Gosh. I worked 8-9 hour shifts on my feet and would come home an aching, tired, miserable, mess. My hips and knees were the worst! I also had a severe bout of anemia in high school as well. I would pass out if I walked up the stairs, or scrubbed my head in the shower. I ended up having to stay home from school for a few weeks and had to quit all of my physical activities. I didn’t mind the pass on gym class, but I was really sad to stop my dance classes. I never got back to them. I tried, but my body just didn’t work the same. I would even fall asleep in the shower in the mornings. Thinking back on it, I was really fatigued, and it wasn’t at all normal. But at the time, I didn’t know any better. My health didn’t get any better in college. I had terrible fatigue coupled with anxiety and depression. I started having awful digestive problems in my early 20s, too. But still, no one had any answers for me other than that I was depressed! Well, of course I was depressed! I felt like total crap all the time and had unknown pathogens wreaking havoc inside my body! It wasn’t until I was 26 that the autoimmune diagnosis came along which lead me to find the Lyme disease several years later.
My first step in treatment for the Lyme disease was to start an protocol that came highly recommended by a trusted friend and health coach. The Chinese herbalist was Dr. Zhang. He has his own clinic in NYC specifically for the treatment of Lyme disease and other difficult to treat diseases. When I first started the protocol, I felt like I was dying. I started to even prepare myself for the possibility. The reaction to the treatment was horrible. When you treat Lyme Disease, you have something called a Herxheimer Reaction. It’s the body’s response to toxic die off. You feel worse and your symptoms intensify before you feel better. In the Lyme world, we call this “herxing”. I felt like I was in an endless herx. I would detox daily with my infrared sauna, ionic foot baths, teas, other supplements, colon hydrotherapy, massage therapy, epsom salt baths, anything I could try to lessen the blow I would. I would break down almost every night for the next couple years and sob because I wasn’t feeling better. I knew that people with chronic Lyme disease did not lead comfortable lives. I could barely leave my bed for months. If I did, I paid for it hard later. Eventually, I felt a small amount of relief. I could read again, and I had a tiny bit more energy. Some of the joint pain was slightly better. But, I was still extremely ill and after 10 months on this protocol, I had plateaued and knew it was time for me to try something new.
I was and still am very involved in the chronic Lyme disease community online, particularly on Facebook. Through that group and through word of mouth I was connected to a person who lived near me who was now in Lyme remission and was doing great! She had gone to a local wellness center that treated Lyme with a different herbal protocol and had great success. So, I went there, did their testing and started their treatment. They told me that I was one of the sickest patients they’d ever had (you’d be surprised how many times I’ve heard this!). I hated hearing that because I was already so down on my luck with the first protocol not working that I didn’t want to think of the chances of this one being unsuccessful, but they were confident that it would work. After their testing of all my organs and systems, their opinion was that I had had this disease for well over 20 years, which would have put me back at the age where I first started noticing the joint pain. Things were going okay on this protocol until I increased the dosage for the first time, and it hit me like a truck! The herxing was beyond anything I had ever experienced before. I was so sick, I couldn’t get out of bed (not exaggerating folks, for real). I couldn’t do anything for myself. Showering was extremely difficult. We had to bring in help to cook, clean, and do errands and things around the house (Thank you Vicky, we would have been lost without you!). They told me to go back down on the treatment to the first dosage, but I continued to be just as sick as I was when I first learned I had it, and I knew my body just couldn’t handle this protocol. I once again felt like I was on my death bed. So, I stopped the treatment all together and hoped to regain some strength.
During this time, we knew we had to find another route for treatment. It seemed as though my body, specifically my liver was not capable of handling the herbal protocols. They were just too strong and knocked me out entirely. We were seriously considering a stem cell treatment center in CA. It was a huge investment of money and time and the reviews were not that stellar. Some people had success, others none at all. We were so confused and uncertain of what to do. Thankfully, my husband was still out in the world making waves and helping others and someone came into our lives at that time that has forever changed ours and we couldn’t be more thankful. Angela, a client of my husband’s was selling t-shirts months before for her own daughter to go to CT to have a rare laser treatment done for Lyme disease. I remember when Ryan came home with the T-Shirt and told me the story of Angela and her daughter at that time. In our desperation for possible avenues, my husband recalled Angela and reached out to her to ask her about how that treatment went. She said that her daughter was doing amazingly well and told us how to get in touch with the Dr who did it. Everyone we heard of that went to have this treatment was doing much better, at least in terms of their Lyme disease. We were put on a waiting list for 5 months. Those were the longest, hardest, most terrifying 5 months of our lives. I wasn’t on any treatment at all because nothing was helping. We felt like if this treatment didn’t work, we had no idea what to do next. I couldn’t imagine continuing to live in the state I was in for the rest of my life. It was an incredibly emotionally difficult time for us. We wanted to be so hopeful about it, but with our experience of being hopeful and then being let down in the past with other protocols, we knew it would be foolish to put all of faith into it. But, we kind of did anyway.
Finally that 5 months was up and we left for CT. We were there for 12 days, with a total of 8 treatments. He determines which strains of Lyme you have as well as which coinfections (when you get bit by a tick, you do not get just Lyme borrelia, you also get other infections that they carry like Bartonella, Babesia, etc). I had 14 strains of Lyme of both stage 1 and stage 2, and 7 coinfections, including Babesia and Rocky Mountain Spotted Fever. He said that of the strains that I tested positive for, some were from 20+ years ago, and some were more recent years, so it was likely that I had been bit more than once! It was in all of my organs, but the majority was in my brain stem and cerebellum. On the final day when he said I no longer have any Lyme in me, I couldn’t even believe it. I was having herx reactions to the treatment, so I didn’t feel well at this time, but I knew eventually the herx would fade. We left the office and went outside and cried in the car! That night we went out for a fancy dinner to celebrate and headed home the next day. I was in so much pain the car ride home, but my heart was full of hope!
When we got home things got worse. I continued to herx for several months. It wasn’t until 4 months later that I really began to notice a change. In the meantime, I’d been diagnosed with yet another chronic condition called Interstitial Cystitis or Painful Bladder Syndrome; likely also caused by my immune system being weakened for so long, wrecked with Lyme disease and other pathogens. This was another huge blow that really sent me in a downward spiral emotionally. I had constant stabbing pains in my bladder around the clock. Interstitial Cystitis is a different subject, so I’ll write more on it another day, but it really floored me how yet again, I get another major diagnosis in the midst of trying to recover from the previous one. I can’t seem to escape! But slowly, I started noticing my Lyme symptoms were getting better. I was able to walk further, I had less pain in my head and joints, and I could start to do more than one thing a day. We went to Hawaii in January, and I walked in the sand! That was a major moment! I hadn’t been able to do that just 6 months prior.
Now, exactly one year later, I am doing much better than I was before that treatment in CT! I am able to function at a higher level! I can cook again, I can take care of myself, I can walk around the neighborhood, I can run several errands, I just have more energy in general! The constant headaches are gone. (I do owe some of that to Family Chiropractic in Cranberry. Dr. Amanda Jordan and Dr. Cotey Jordan have an amazing Migraine Challenge every year, and they really helped me out, I would highly recommend them!) The joint pain is much better. The fatigue is much less. My overall hope and state of well-being has really improved. I look forward to living a full life instead of fearing a life of misery. I am still struggling with other pathogens and organ dysfunction in my body that cause me pain and fatigue. I still have to take very good and careful care of myself. I can still get really run down. But, all of my blood work currently shows no signs of Lyme disease. There is no test that can definitively tell you for 100% certain that you DON’T have Lyme disease. But, all other tests that might indicate that it’s there are negative. It’s possible there are some stragglers still inside of me and I know I still have a co-infection that we did not know about at the time of the treatment in CT. But, I’m still hopeful and determined to eliminate them and continue on my healing journey!
Having chronic Lyme disease opens you up to a whole other host of disease and health problems, not just the Lyme disease itself. I myself have experienced severe adrenal fatigue, hypothyroidism, bladder disease, autoimmune liver disease, polycystic ovarian syndrome, endometriosis, IBS, arthritis, kidney dysfunction, parasites, anemia, gastroparesis, among other things. If you get bit, I would urge you to seek treatment immediately. It is not something that you want lingering in your system. It causes all of your body systems to go completely haywire.
I am so thankful for my husband who has always believed me, believed IN me, and trusted me throughout this entire journey. I wish it was over, but he remains so faithful to seeing me through it. He’s been a constant source of love, support, and patience for me. I would never have made it through any of this without him. When everyone else told me I was fine, he stood by my side and fought for me. So often when women have chronic illness, men, and other people in general, but particularly the men, will overlook it and think you’re just overreacting or “it’s all in your head”. We aren’t taken seriously because we “don’t look sick”. We sit in social situations and smile while we’re in great amounts of pain. So everyone just assumes you must be fine. They don’t know that adrenaline kicks in when you’re out and you want to be normal for a little while, so you ride the adrenaline and then come home and completely crash after a few hours of being “on”. I am so grateful to Ryan for looking past all of that and for knowing my limitations and accepting them. I’m sure it has been so hard for him to not be able to live the way he would if his spouse wasn’t so ill all of the time. But, he has been so patient and loving in the way that he deals with it, never making me feel bad. He knows I carry a lot of guilt, but he never makes me feel guilty. I’m so glad he has never had to feel the pain that I feel, but I know he gets it. I couldn’t love him more for tirelessly taking such good care of me. With everything that I’ve endured, I’ve always known how lucky I am to have him for a husband.
And so, if you’ve read this far, thank you! I hope that you learned a little about chronic Lyme disease and what is like to have it. If you know someone who might relate to this, I would encourage you to share it with them so that we can connect. I love to be a source of support for my fellow sufferers. Having a community of support really makes a huge difference! Life isn’t all about suffering. We find ways to enjoy the beauty in it, too! Part of that beauty is supporting and loving others in the same or similar situations. Anything I can do to help someone else who’s also hurting always helps to ease my own pain. I’ve also realized for me that things like fashion, decorating, and creating other beautiful things around me is a way for me to channel my frustrations and pain and to bring beauty into the world. So, I hope that you enjoy my blog and that it brings a little fun and enjoyment into your life as well! I would love for you to share anything in the comments below, or message me, about your journey or things you like to do to bring beauty into your life, too 🙂