So you want to know more about me? Perfect. Let’s get started with my history of Lyme first. It begins way back in childhood (I’m now thirty) at the age of thirteen. That’s when I became very ill, pale, thin, and prostrated. Mom took me to countless doctors, several of whom were grade A quacks and the only thing we came away with was that I had a “Mono-like illness”, referring to Mononucleosis. My symptoms were extreme fatigue, general ill feeling, sweats, fever, etc. My white blood cell count was low. It lasted seven months. I never fully regained my health and wasn’t able to attend school again so that’s when I started home-schooling. I went through a lot of emotional turmoil during those months because no one, including my family at times, fully believed I was ill. When I look back at photos taken during that time, I think “dear God in heaven. How could anyone have said that pale, sickly child was faking?” I’m sure I have serious emotional scars from that time, but the past is in the past and I try not to go back.
I had fairly good health for a couple of years afterward, and at the age of sixteen, it struck me again. This time I had more control over the situation because I wasn’t a child any longer and I don’t feel as though I suffered emotionally nearly as much. This time it took a good year and a half to feel like it was behind me. However, I still didn’t feel well and could only function well for hours at a time and was exhausted the next day or two from whatever activity or event I took part in. My health seemed to decline throughout the years and around the age of twenty I was limited to choosing what I would do for the day because my energy supply was so diminished.
Then, at twenty-three I developed a severe sore throat (considered world-wide as the worst in existence) and was tested for Strep and Mononucleosis. The next day the test came back positive for Mono. I was floored. The sore throat lasted nearly three weeks. I remember falling into bed at night and praying to God that he would relieve my suffering. I could barely eat or drink. The pain was excruciating. My entire throat and tonsils were covered in thick white nastiness. My tonsils were nearly touching. I remember during the first few weeks, my eyes were swollen and strange looking. I was once again exhausted and very ill. This time around, my spleen and liver were swollen and very painful at times. I had the real Mononucleosis. I remember being grateful to have a name to my illness. People have to believe a name, right? I was sick for several months once again and suffered one relapse after trying to do too much too soon. Let me tell you, it takes a lot of patience and mental stamina to deal with a chronic illness.
Once again, my health took a beating and I came away from the illness much, much weaker. This time, I lasted only a couple hours a day at the most before feeling like my body and mind were shutting down and only performing the most required functions in order to get home and crash for two days. My life became vacuum-like. I rarely saw people outside my immediate family because I was just too weak to go out. This went on for a couple of years before I had a serious breakdown and determined that if I didn’t receive real help soon, I was going to die one way or another. That’s when my Lyme doctor entered my life. We’d heard about him and how he helps people with chronic illnesses get well and knew that the time had come for action. He ran tons of blood tests (seriously, twenty-one vials of blood at one time?) He spent an hour or more with me at each appointment. He assured me he would help me get through this. I was tested for Lyme Disease and was told I had it. Finally, a name. Yes! A name to this misery. But it took months to really believe I had chronic, late-stage Lyme. It just seemed so preposterous that I was bitten by a tick. But the more we did our own research, the more we realized, that yes, I definitely had Lyme. And throughout the next few months, more names were added. Not just Lyme? There’s more to this ugliness? Oh, yes. Much more. And imagine our shock to learn that these other little buggers were the real mischief makers; the ones that caused most of the suffering.
Treatment began. The battle had started. And it was a battle and still is. As my wonderful M.D. says, my body is a battleground. We are fighting for my life. The battle has raged for so long that the troops are without ammunition and are exhausted from the fight. They’re almost ready to lay down and die. But we’re coming in and giving them more ammunition so they can fight some more because these troops, my body, is the only army I have. There is no backup. We simply have to put the fresh ammunition into their hands and pray they do their job. But because my body is so weak, using too many medications (ammunition) can make me weaker. Several times we’ve had to back off or try something else. I recently had a PICC line by which I was receiving IV medications in addition to oral antibiotics and countless (almost) supplements. I had that removed after nine months of torturous on-off treatment that didn’t seem to do much but make me feel like the living dead. When I had a PICC line, I had in-home care. My nurse came in once a week to change the PICC dressing (what horrors we went through in the beginning when a severe rash developed!) but we took care of giving the IV medications each day ourselves. Thankfully, that part of treatment is over.
But of course, when you’re using antibiotics or natural antimicrobial agents, the spirochetes (Lyme) are dying. That causes your body to become very toxic and makes you feel even worse, so that’s where detoxifying comes in. More natural remedies are added to the list of pills to take and substances to drink. And they do help. My go-to is Septonsil. This substance really detoxifies! Never underestimate the power of detoxification. I also take a detox bath nearly every day when I’m using antibiotics.
I’ve been seeing my Lyme doctor since mid-2013 and when you’ve had Lyme for years, it usually takes years of treatment to get well, or to at least be able to resume a somewhat normal lifestyle. I have an ND and an MD and I currently see just my MD. My ND covers my Lyme and its co-infections and my MD covers my pain management, other medications, hormones and more. I haven’t seen my ND in a couple years and I’m declining in health again so we’re going back very soon.
My current symptoms/complications are severe fatigue, weakness, moderate-to-severe pain in my legs, hips and back, nerve pain, malaise, Myoclonus, tingling sensations, fever, cold extremities (Hypothalamus dysfunction), night sweats, Lyme terrors (graphic, horrific, vivid nightmares), anxiety and depression, irregular heartbeat, liver and spleen pain and inflammation, dizziness (POTS), shortness of breath, chest pains, shooting pains (Polyneuropathy), occasional sore throat, headaches/migraines, dietary issues, Gastritis, ulcers, nausea, weight loss, intolerance to sunlight, a parotid tumor (now removed), and more.
Currently, my health is still unstable, but I’m able to do quite a bit more than I was. I don’t know if the PICC treatment helped a bit or if it made me so ill and my pain so high that I actually feel better just from the relief of being off of antibiotics, but the change is wonderful. I’m going out with friends for two-three hours at a time, dating, going out shopping with my mum , designing at Bellis Bohtique again, and more. The more freedom I taste the more I want. Never-mind that after an excursion I have to lie flat in bed for the rest of the day and usually the next because of extreme pain and fatigue; it’s totally worth it! I am loving every minute of tasting normalcy. It’s the most delicious thing in this world to a freedom-starved lymie .
Update- 3/21/17: The past winter and this year so far have been horrible. I’ve been so sick and having a lot of chest pain which we thought was my heart. We still don’t know. I’ve been in the ER and had 911 called because of the pain and difficulty breathing. I was literally gasping for air. The days have been very hard. My pain is super high, my fatigue worse than ever, headaches, anxiety, and fever. I’m having terrible night sweats where I’m shivering yet hot at the same time. My showers are an ordeal and make my chest really hurt. It’s scary, I have to be real. I’m hoping better days are just around the corner. I just set up a fundraiser page to help me with the costs of the treatments I will need to get better since insurance does not currently cover for Lyme Disease. I know it won’t be quick, and I know it will get worse before it gets better and will take years since I’ve had it so long, but I am ready. I have no choice but to be ready. And to be a warrior.
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