I’ve written this blog post largely because I cannot keep up with the volume of questions and calls from people who have either been diagnosed with, or suspect Lyme. I hope this provides some guidance. I am still available to chat or answer questions, but hopefully, this will help you navigate through your own journey back to health. Please share things that have helped you in the comments section (remember, everyone is different). This is simply a post highlighting a lot of what I have learned, and how I’ve gotten to where I am today. THIS IS NOT MEDICAL ADVICE, AND I AM NOT A DOCTOR.
If you would have asked me 3 years ago, there is absolutely no way I would have said I would still be alive today. I was very close to death. My weight had dropped to 91 lbs, and my body temperature was hovering around 94 degrees or so, which is considered hypothermic, and can cause all kinds of serious issues, including vital organs shutting down. My hair was falling out in clumps. I was in constant excruciating pain, and in a panicked mental state. I did not know where I was or what was happening to me most of the time. I was unable to communicate…the words just weren’t there. I couldn’t understand what people were saying to me. I had the memory of a goldfish.
My arms and legs felt like they were being twisted like a Barbie doll, and then being ripped from the sockets. I had shooting pains that felt like burning hot metal rods were being shoved up through the bottoms of my feet and into my legs and body. I felt like I was being stabbed and sliced into little pieces. I was seeing stars, and lights, and squiggles, and hallucinating pulsating kaleidoscope designs, (and no, this was not entertaining in any way- it was the most frightening thing I have ever lived through). Sometimes could barely see anything at all. I felt like my heart was going to either stop or explode.
I did not even have the strength to lift my head up off my pillow or grab my phone to respond to a text. I felt like I was being electrocuted in short bursts. I believed I would die, I just didn’t know how long it would take. I hoped my suffering would end soon. I’m sure this is difficult to read, but it was my reality, although only a small glimpse of it. That was the state I lived in, and each second seemed to drag on for an eternity. I could not sleep. I could not escape it. Nothing I tried alleviated my symptoms, and I was put on one pharmaceutical drug after another. I could no longer tell the difference between what was a side effect to medication, or a new, frightening symptom. I wanted to crawl out of my skin. I felt overcome with fear and despair, and found it difficult to remain optimistic, but I held on to every little shred of hope I could.
Fast forward to today, and I would say that I’m approximately 80% healed. I have little to no pain most days, and when I look back to the incomprehensible agony I was in, it is truly unbelievable that it even happened to the degree of severity it did. It seems so surreal. I had no idea that one little bug bite that I didn’t even notice could cause such great suffering and leave me fighting for my life.
Today, however, I am doing light years better. I am working again as a management consultant, and don’t feel like a complete idiot trying to communicate effectively with high level executives and CEOs (I used to get lost like a deer in the headlights during the middle of a critical business conversation or negotiation- as if I had hit a brick wall; I had no idea what I was doing or where I was, and it was extremely traumatic and mortifying each and every time).
My memory has finally started returning. I remember so much now that it constantly amazes me. I’m at a much healthier weight and body temperature. I am able to sleep and also take naps, which was never possible when I was very sick. My hair is growing back. I can see again, without visual distortions, hallucinations, or blank empty spaces. My vital organs are functioning extremely well. I have gained muscle tone and energy (although I’m still very tired trying to keep up with everything in life).
Even when I am having a bad day, I almost always have a HUGE smile on my face, and am cracking jokes left and right. I have my confidence back. I don’t have to preface every single commitment I make with “as long as I am feeling up to it…” I no longer feel like I am constantly letting everyone I love down. I am very active (most of the time), and I don’t pay for it for days after overdoing it, as I did in the past. Most importantly, I am still here, I am still improving, and I am HAPPY!!!
If you are ill with Lyme Disease or any sort of autoimmune disease, perhaps my story can help you in some way. This is nothing I would ever wish upon anyone, but unfortunately, MILLIONS of people across the world are suffering from Lyme and associated diseases. It is far more common than anyone realizes, and infection rates are growing exponentially. Unfortunately, only a small percentage of those who contract Lyme Disease actually get an accurate diagnosis, and those who do are typically still in the acute stage of the disease, which is much more treatable than once it has spread throughout the body and brain. Far too often, Late-Stage Lyme Disease patients are diagnosed with ailments including: Multiple Sclerosis, Lupus, Rheumatoid Arthritis, Parkinson’s Disease, Bi-Polar Disorder, Fibromyalgia, Chronic Fatigue Syndrome, Addison’s Disease, ALS, Somatic Disorder, Thyroid dysfunction, and the list goes on…
Let me reiterate that I AM NOT A DOCTOR and THIS IS NOT MEDICAL ADVICE. Please consult a medical health professional to discuss your unique case and treatment options. I am simply sharing what has worked for me. It might help you, or it might not. Everyone is different. Genetics, different strains of Lyme a.k.a. Borrelia (there have been at least 300 strains identified worldwide), co-infections (ticks are known as ‘nature’s dirty needle’ and often carry many other pathogens, in addition to Lyme), and many other factors need to be considered.
Experts are now saying that instead of Lyme Disease (which has a huge stigma associated with it), it should be renamed MSIDS or Multiple-Systemic Infectious Disease Syndrome because of the complexity of treating many different infections that may be contributing to autoimmune like conditions. To make matters worse, there is no accurate testing, no standard treatment protocol, very little funding for research, and no health insurance coverage or recognition of this disease by the mainstream medical community (once it is no longer acute).
Having Lyme Disease is like becoming a member of the Dallas Buyer’s Club of our time- paying cash to get proper testing and be treated under the table, searching the globe for something…anything that might help us heal. Many of us have willingly risked our lives by undergoing extremely controversial treatments because we’re willing to die in the hopes that we might actually have a chance at living again (if something happens to work).
I have researched this disease tirelessly for years, and have tried almost everything I could get my hands on, as far as treatment is concerned. The one thing I have not tried, for many reasons, is IV antibiotics. There is no right or wrong answer. This is largely uncharted territories. With that being said, here is what I have learned:
- I wish I had known before starting treatment that detoxifying the body is a critical piece of healing. My body was full of toxins, including a 14.5cm x12cm x11cm tumor on my liver that I was unaware of, and over 30 doctors and specialists, and a week at one of the best hospitals in the world failed to detect. I am not a big person. This tumor was taking up half of my abdomen, and my stomach was distended because the tumor had pushed my organs out into my belly so that it could continue to grow.
- The liver filters toxins from the body (ie. Lyme bacteria and other microbes and toxins). I am fairly certain that this tumor grew to the size it did because of the infections my body was trying to fight. I consulted 3 major, very reputable hospitals, and not one of them would agree to run a Lyme or co-infection panel on the tissue from my tumor, no matter what. Mine is a much more extreme case, but I highly recommend that anyone begin with detoxing before starting any sort of treatment. It will make the Herxheimer reaction less excruciating and less dangerous vital organs and the brain.
- There are many methods for detox. Some include: Moor Mud Baths, Epsom Salt Baths, Liposomal Glutatione, Humic/Fulvic Acids, Green Tea, etc. *See links to articles below
- Do everything in your power to get a personal copy of all of your medical records from.Every.Single.Doctor.You.See. You have rights to all of your records, including physician notes, lab results, scans, etc. It will save you a lot of time and money if you have a copy of your medical records in your possession (you will likely be seeing many doctors in specialties that you never knew existed). Know your health history (if your brain is functioning well enough), and educate yourself on any medications or supplements you may be taking (and potential interactions, reactions, or side effects). This is extremely important, especially because you may not have a working memory to rely on. Things get overlooked and missed. Doctors and nurses are incredibly busy.
- Learn about the foods you’re eating (where they are coming from, what they are made of- READ INGREDIENTS!!! If you don’t know what something is, you probably shouldn’t be consuming it. Focus on a more plant-based, organic (when possible) diet…many of us need to make a conscious lifestyle change in order to re-build our immune systems and give our bodies the tools to heal.
- EVERYTHING you put into or onto your body can contain toxins and unsafe chemicals. A woman puts up to 515 chemicals onto her body each day!!! (lotions, shampoos, conditioners, detergents, cosmetics, hair products, deodorant, etc.). It will be expensive to buy natural products, but you will likely pay for it sooner (by purchasing safe products) or later (by spending all the money you have to pay doctors and medical bills simply so that you can continue living).
- You need to become your own advocate and take your life and healing into your own hands- or have a loved one assist, if you have that luxury…someone that your truly trust with your life. I’ve sure found out the hard way that doctors aren’t always as smart as they’d like you to believe. There is a lot they need to know and continuously learn, and they are basically playing detective, making educated guesses through process of elimination.
- Learn to say no. Above all else, you need to pour all of your energy into healing. I was trying to continue working, but it just was not possible. When you see the stack of medical bills growing bigger every day, this eats away at you. Being single, I did not have a spouse to help support me. My financial situation was getting worse and worse, but I came to the realization that I would never be able to pay anything off if I didn’t give myself the chance to rest and recover.
- Learn the value of downtime and rest- I never rested before I got sick. This was incredibly difficult for me because before I fell ill, I was constantly on the go. I habitually worked 12-14 hour days, attended networking events, volunteered as a Director for the Rotaract Club of Chicago’s International Service Project, was very involved in the community, and also had an active social life. I felt like I was wasting precious time if I wasn’t doing something productive. If you are ill and take on more than you can handle (which won’t be much more than existing and taking your meds for a while), you will be unable to follow through/keep your word, and people will not be understanding. You will lose the credibility you worked so hard to gain.
- Swallow your pride and ask for help…you’re going to need all the help you can get. This was one of the hardest things for me. I have always been a very proud and independent person, and would never ask for help for anything. I was always the one who went out of my way to help others. This has to change. Accept help from anyone who is willing, but also try not to lean on one or a few people too much. It will burn them out and they will grow to resent you.
- Do not push good people away because you are afraid of them seeing you at your worst, or because you want to appear strong. There is so much strength in being real, and vulnerable, and human. I pushed a lot of incredible people away because I was embarrassed, too proud, and did not want them to see me on my death bed. I would only allow for most people to see me on my better days, and for short periods of time. I learned to hide my symptoms as well as I could. There were few close friends, roommates, and family who saw the reality of this disease, and even that, I tried to shield them from as well as I could. If you’re as lucky as I am, you’ll have a handful of people who will someday understand, and they’ll forgive you if you do this.
- Your #1 priority must be healing. If people can’t understand that, maybe they shouldn’t be a part of your life.
- You will lose a lot of friends and loved ones. You will also find out who the real ones are, and you will learn that there is a hugely supportive Lyme community full of people who completely understand everything you’re going through, and have suffered extreme pain and great loss. You will feel isolated and very alone, but you are never alone in this. Don’t be afraid to reach out. I’ve made some incredible friends who are fellow Lymies, and I don’t know if I would have had the strength to keep fighting without the occasional pep talk sessions, venting, or comparing treatment protocols. You have A LOT to learn about this disease. I’ve been studying for 3 years, and I still feel like I’m just scratching the surface. Many of us Lymies know more about this disease than doctors, and we can be an incredible resource and support system to each other.
- You will get worse before you get better…especially if you don’t detoxify enough. As if you even thought that could be possible. It doesn’t seem to make sense, but look at cancer patients when they undergo treatment such as chemotherapy. Do not give up on whatever treatment protocol you decide on too soon because you feel so much worse (unless you have some extreme side effects, of course). Herxing is normal. There was a long period of time when I couldn’t tell if the things I was treating with were actually helping, or if they were just killing me. It was the worst thing I have ever lived through, but I did live. Keep tabs on your organ functioning to make sure your body can handle it, and if treatment gets too intense, and the herxing is too much, ease up a bit until you are able to tolerate it better.
- Set goals (however small they may be) and have a dream or positive vision for the future. You need to truly believe you can heal, and you also need to have something to fight for…something to work towards. Many Lymies have said they would have given up long ago if they hadn’t had children. I have no children. I have the best family in the world, but so many times, I wanted the suffering to end for all of us. The greatest pain for me was not my physical pain. It was watching the pain my illness inflicted on my loved ones, seeing them tormented from the suffering they watched me endure, and knowing there was nothing they could do to make me better. It was also from the cruel remarks made by people, and many of them not understanding what I had to do just to make it until tomorrow. The judgement was constant, and I had to learn to grow some VERY thick skin, and not dwell on how others had hurt me or what I had lost.
- My first and greatest accomplishment after my major liver resection surgery was to make it to Telluride Bluegrass Festival, which was exactly 2 months (to the day) after my procedure. Looking back, I still don’t know how I made it there, but during all of those sleepless nights when I was in agony, paralyzed by extreme fatigue and fear, I just kept day dreaming of a trip to Magical Telluride with my best friend.
- I promised myself I would do everything in my power to gain enough strength and endurance to be there. I could barely stand, or even breathe deeply because it hurt so badly with my giant sutured incision that had severed half of my stomach muscles, but two weeks after my surgery, I started walking up to 2 miles every day I could (often with a cane at, the age of 28). The trauma of a major surgery also caused me to have a relapse, but nothing was going to stop me from going to Telluride. I REALLY had to take it easy, but I will forever be grateful for that trip, and what it symbolized to me. It gave me something to look forward to, and a deadline to push myself harder than I knew was possible.
- Allow yourself to grieve, but then pick yourself back up again. No one wants to be a Debbie Downer, and no one wants to be around one, either. It’s difficult to hear others complaining about a cough, or a head cold, or the sniffles, and then get short with your for talking about Lyme AGAIN. Their pain and suffering will end in a few days. Yours may continue indefinitely. Try to understand their reality, and that is all the suffering they know. MUCH easier said than done, but they will never understand your pain. Try not to become resentful.
- If you don’t already have a good sense of humor, I suggest you develop one very quickly. You need to be able to laugh at yourself, and not let the severity of this disease ruin your hope. Attitude is everything, and without a positive attitude, I believe it would be nearly impossible to survive something that shatters you to the core of your being the way this disease does. It is not going to be easy, and there is a lot you will lose. There is also a lot you will gain…it just gets difficult to see that in the midst of your suffering, or when treatments are awful and you keep getting worse, or when you’re on your 4th doctor visit for the week and it’s only Tuesday.
- Learn that healing is not just about healing the body. When I was in California, I learned invaluable things from so many beautiful souls who each played a role in my recovery. It was incredible the way things finally started coming together like puzzle pieces. I learned to let go of things that did not serve me, but I had been carrying around for a very long time (such as anger, resentment, guilt, fear, jealousy, emotional pain, etc.). You cannot truly heal until you focus on healing your mind and soul, in addition to your body. Breathe in love, breathe out hate/pain/anger, or whatever it may be. Learn to live in the moment and appreciate right now. I am still working on this, but am no longer consumed with stress or worry, or dwelling in the past, or being anxious about the future.
- Surround yourself with positive people that have good energy. Pay attention and you will see what I mean. There are many people who will bring you down with their negativity or unhappiness. Find the ones who make you feel alive and hold onto those people.
- Question everything. I mean everything. Even what you are reading right now. Question your doctors, and be annoying if you must. Your life depends on it. Listen to your body. You are the only one who can feel and understand and try to make sense of what is happening…articulating that into words and getting someone to actually believe you is another story. You need to learn all you can so that you can make informed decisions. No one cares about your life as much as you do.
*I HAVE NOT BEEN PAID TO PROMOTE OR SPONSOR ANY OF THE ITEMS I LIST BELOW, BUT WOULD HAPPILY ACCEPT PAYMENT OF SOME SORT (or even hookups to discounted supplements, if you happen to have any) 😉 REGARDLESS, I WANT YOU TO FIND SOMETHING THAT WORKS FOR YOU, SO MY MAIN GOAL IS TO SAVE YOU TIME, FRUSTRATION, MONEY, ETC. BEST OF LUCK TO YOU!!!*