This will be the longest blog I have ever written and probably the longest I will ever write. I do not consider myself a writer by any means so excuse the poor grammar:) Some of you may know that over the past year I have been suffering from Chronic Lyme Disease. An awful, complex disease that can potentially take over every aspect of your body and mind. Now I’m not here to diagnose anyone, tell them who to see and/or what to do if you have lyme disease, I’m simply telling my story. I consider myself one of the lucky ones because once my symptoms went full blown my actual diagnosis took roughly 3 months compared to many who suffer for years without a diagnosis. Ever since this all started, I’ve had a nagging feeling to share my story – my goal when starting the treatment battle because that’s exactly what it is, a battle- was to one day bring awareness to the disease and to be an advocate for better diagnosis and testing. I have not kicked it, just yet, but with the recent developments in my life (those I will share later in this post) I have come leaps and bounds. My hope is to educate and help people, if just one person reads this post and I can help them, than I will feel like I made a small impact on a disease that has become an epidemic.
A little about Lyme Disease: It is reported that 300,000 cases of Lyme disease are reported each year and 20-30% of those cases are Chronic which means the 28-day antibiotic protocol doesn’t work for us. The standard testing that your primary care dr. gives you is believed to be 50% inaccurate- and by the way, very few primary care Dr’s know anything about this disease or if they do, don’t want to acknowledge it which is very sad considering the epidemic at hand. Here’s the confusion over Lyme disease- it doesn’t just come from a tick- it can be carried by other insects and it can be passed sexually and intrauterine. The CDC will not divulge this information so disregard most of what they put out there about Lyme Disease- why you ask, well that’s an entirely different blog post for another day.
So here is my Lyme story- you will find once you do your research that we Lymies’ all have one- how we got it, what our symptoms are/were, how we got diagnosed, what Dr. we see and how we are battling it. It’s hard to say exactly when I contracted Lyme but when the Dr.’s heard I grew up in Vermont they immediately think there’s a good possibility I contracted it as a child and it went unnoticed and laid dormant for years. Which makes it hard for me to guess when my symptoms exactly started or what health issues I’ve had in the past are related. So I will just take you to around 12 years ago when I got mono at age 30. Not a pleasant time in my life to contract mono as I had a job that had me working 12 hour days, I was in a new relationship and my new love had a 2-year-old that I spent a great deal caring for- so needless to say, recovering was a difficult task. I ended up relapsing twice that same year- ugh. By the 3rd relapse I was now curious why it kept coming back- there had to be an underlying issue. I consulted with an Infectious Disease Dr. at the time and all they could tell me was I was one of the unlucky ones who could battle this off and on their whole lives- great news right.
Well, fast forward 10 years to October 2015. I started getting very bad headaches. Now I’ve always suffered some sinus headaches, but these were much worse and quickly turned into migraines. I’d never had a migraine in my life and I was getting 4-5 a week- literally debilitating- it seemed like all I did was take naps in the dark almost everyday. It’s not just the day of the migraine that sucks, but then you’re in the migraine fog the entire next day. I saw my primary care Dr. in November and they quickly ordered an MRI in fear that it may be a brain tumor- thank God it wasn’t but the MRI did show a great deal of white lesions on the brain. The report read several possible diagnosis such as MS, Vasculitis, and lyme disease. Immediately my dr. gave me a lyme test and it was negative. After numerous Dr. visits later and no firm diagnosis, I continued to suffer migraines over the next 2 years- I had them better managed with meds, but I never knew when they would stop me in my tracks. It still bothered me that I was getting them frequently and no cause could be found.
Now this leads me up to May 2016 when everything changed drastically for me, my life and my family. I was insanely busy with our business and doing a little travel. I was up in VA Beach for work with a friend for the weekend. I told her I just hadn’t been feeling myself lately- really tired and I had this constant pain in my left rib cage under my breast that wouldn’t go away. Immediately upon my return, I scheduled an appointment with my GP. Over the course of the next few weeks my pain spread throughout my entire torso, I was beyond exhausted and a boatload of other symptoms started to develop. I had 2 CT scans, tons of blood work and another MRI but nothing significant was found other than a cyst on my ovary and a kidney stone- neither of which was the source of my pain. In the meantime my GP didn’t seem to think there was anything wrong with me. I finally ordered them to run a mono test and lo and behold it came back positive for an active case- this is when I started to lose faith in Dr’s. Clearly I had something more serious going on like an autoimmune disorder, but after numerous Dr’s, still no firm diagnosis. This is where my parents come in and where the power of prayer is evident. My parents knew that I had been suffering for several months and were praying the Dr.’s would find an answer. One day my Mom was at my Aunt’s house and read an article in a magazine about a woman from Canada who had all the same symptoms that I had and after several years finally got a diagnosis of Lyme Disease. The God-incidence to this story is that 2 days prior to this, my Mother heard a voice wake her up out of a dead sleep and say “Ally has lyme disease”. Gives me goosebumps every time I think about this- I’m not sure if it was God or my deceased Gram, but someone up there is looking out for me!
Now once I heard this, I told my Mom, that it can’t be Lyme Disease, at this point I’d had 2 tests done and they were both negative. But my parents wouldn’t let up and they insisted I do some research and try to get the better testing I needed. So what do we all do this day and age for research, I took to the internet non stop over the weekend. I found a specialist in DC- LLMD- Lyme Literate MD’s is what they’re called. I told my husband that on Monday morning we would call this top guy on my list and see if we can get an appointment, if I couldn’t get in, my 2nd call would be to Anne W. who was much closer in Asheville, she was a naturalist that specialized in Lyme Disease. We called first thing Monday and the receptionist said they had a cancellation for Wednesday morning that we could take or it would be at least 6 weeks to get in. So away we went, packed the car and drove 7 hours north. At this point my symptoms had gotten significantly worse, I could barely walk on my feet because the soles felt completely bruised as did the palms of my hands. I had to drive with a fuzzy steering wheel cover- yes I know so 80’s. In addition to my hip steering wheel cover, the nerves that hold the ribs together in my torso hurt so bad, I had to have a bed pillow behind my back at all times when sitting. I went almost a year without wearing a bra. I would literally feel like someone beat me with a bat all night and sometimes the pain was so bad even the weight of the sheet at night was intolerable. My husband and I moved to the downstairs guest room for 2 reasons- so I didn’t have to climb the stairs often and for the thick soft foam mattress pad on the downstairs bed. I couldn’t sleep on my side- It felt like I had a sharp blade between my ribs that was being crushed when I rolled over. Sleeping on my back hurt like hell too but it was the lesser of the 2 evils. I had night sweats almost every night, I was constantly dizzy and had terrible brain fog, cognitive issues, intolerance to heat and the sun. The shower would have to be tepid temperature because the steam made me feel like I was suffocating and the water would hurt my torso so bad I had to make them quick. I had blurred vision all the time, especially if I was in the sun or first thing in morning- took hours to clear up. Sometimes I would walk and feel like my feet had cement blocks on them, I had hip pain and sciatic nerve pain regularly, nerve pain in my calves, vibrations in my feet like there was a cell phone on vibrate at the foot of my bed, ringing in my ears off/on all day long, numbness in hands and feet, pain in large joints like wrists and knees, facial pain in jaw, terrible hand pain-made worse by using electronics. And of course the extreme exhaustion like nothing I’ve ever experienced- even worse than mono and the restless leg syndrome at night was miserable.
To finally share all these symptoms and have someone actually listen was like a weight lifted off my shoulders. From the moment I walked into the DC Dr. office, I knew I was in the right place. The tech who was taking my vitals said “Anne W., one of our P.A.’s will be right with you”. Totally surprised I said, “Anne W. from Asheville?” He said yes, she works a few weeks out of the month for the Dr…. goosebumps. How are the 2 people on my short list in the same office- I knew right then it was where I needed to be to get help. The visit went very well and lasted about 2 hours – they spent time dissecting my past medical history and reviewing the current symptoms. They were pretty certain just from that visit that I had lyme. They ordered blood work I could have done back here in NC- 20 vials of blood to be exact. Several weeks later, we got the firm diagnosis of Lyme Disease and 2-3 co-infections. The co-infections can be much worse than lyme itself and tougher to kill. So the treatment began in August with protocols of heavy antibiotics and lots of pills- about 25-30/day and weekly blood work. The good thing about the Dr. I see is that they take the mixed approach of using the antibiotics with a combination of natural supplements/vitamins. The goal is to kill the lyme but to also get your immune system to rise above this all while keeping you in a healthy functioning state. Typical treatment is 12-18 months, most people say you begin to feel yourself after 2 years. I’m on a gluten free diet as well as lower sugar and carbs. I’m sharing with you a video I took back in the first few months of treatment. This is not like me to share something so personal, but I think it truly depicts the pain I felt during these dark moments. It brings tears to my eyes to watch this because I remember the pain so vividly. Click here to watch the video: https://youtu.be/wpPTO3zSqzw
So months of treatment went on similar to the video- a constant roller coaster battle. The antibiotic protocol is constantly changing because the lyme are very smart and hard to kill. Their defense mechanism is to release toxins when they’re being attacked so you’re not only toxic from the antibiotics but from the lyme as well. Detoxing is the number one priority on your list of to-do- other than trying to stay sane. I took epsom salt baths every night, drank lemon water concoctions, I did weekly infrared sauna treatments to help sweat out the toxins- I learned us lymies don’t sweat naturally on our own. I did coffee enemas regularly- yes folks, I used to drink it, but turned to putting it up my butt in hopes to clean out my liver which became dangerously toxic at one point where they pulled me off the meds for 6 weeks. There were plenty of times I found myself soaking in a tub at 3am or noon- it didn’t matter the time, just anything to ease the pain. Sometimes my hands hurt so bad I couldn’t turn the tub faucet off, I had to use my feet. I would sometimes go to bed with ice packs on my hands and still have to ice them some days. I think one of the worst symptoms I had other than the ongoing rib pain and hand pain was the head pain- There were times I physically couldn’t talk because the pain in my head was so bad- it felt like there was boiling blood rushing up my spine and into my brain. This went on for several months. I’ll never forget my worst herx day – herxing is what happens when the lyme are dying off- you feel even worse than normal and other things can happen like what I experienced. I hadn’t felt well all day and started getting extreme sharp pain in my heart/rib cage area. It dropped me to the kitchen floor, I was freezing and shivering for almost 30 minutes- I believe I passed out for a few minutes during it all. I only had that happen one other time on a lesser scale. After months of seeing no improvement and getting discouraged, I had finally started to see improvement about 5-6 months into treatment. On my weeks off of the meds I started to get a little more energy back and felt a little more normal. This disease has taken me to some very dark places, darker than I’ve ever been. I have never in my life been a depressed person and I can honestly say this brought me to the lowest of the lows. I have only really cried once in the last 12 years- when my Gram passed away a few years ago. So for me to cry non stop some days was very foreign to me- I hated it, I hated myself, I was so lonely, very anti social because I couldn’t carry on a conversation without getting winded or feeling like my head was going to explode. My poor kids, oh how I wish they hadn’t seen me like that. One day when things started to turn around for the better, I was watching a funny sitcom and I laughed out loud. My 7-year-old said “what was that?” I replied ” what? I just laughed at the tv.” She said “oh, I just haven’t heard you do that in so long.” Talk about breaking my heart. I then realized it had been probably 6 months since I had laughed. My family saw the worst of the worst and stuck by me through it all. My husband was a rockstar in becoming my caregiver and the primary caretaker of the children. He got up every morning with them for school so I could sleep, did all the grocery shopping and cooked the meals. He constantly did research on things that may help me feel better and was a warrior for my health and making sure I would at least try to eat something even on days I could barely chew and would cry through supper. My kids provided me with the hugs I needed and always brought a smile to my face even if I forced it.
Now onto the good, exciting, and very unexpected news! About 7 months into treatment we got the surprise news of a lifetime- I’m pregnant! Yes, a miracle surprise baby on the way. We absolutely had no intention of having any more children (we’re 42)! So not only had I been through the ringer for a year, but I was pregnant- WHAT?? The day before I found out I had been off my meds for several days, but I wasn’t feeling better, was actually feeling pretty bad which was disappointing because it felt like I was moving backwards again. I was driving down the street with tears pouring down my face praying to God and my Gram to ease the pain, give me a break because I can’t take much more. The very next day, I find out I’m pregnant. Again, tears poured down my face – this time from the shock and the unknown. How could this have happened, I’ve been so sick. The questions flooded my mind, how would I feel, could I sustain the pregnancy, is the baby going to be safe. They never stopped for the first 2 months. There’s always the chance of miscarriage, for someone of my age and my illness, the risk is much much higher. But I am happy to report I am 17 weeks along and all is well with me and the baby. In fact, I have felt better the last 2 months than I have felt in a year- I feel like my old self. My lyme symptoms have subsided by about 85%- the rib cage pain and hand pain is still there, but certainly manageable thanks to the elevation in hormones. I’m still tired, which is to be expected, but nothing like I used to be. This has been a walk in the park compared to what I’ve dealt with the last year. I am still on an antibiotic regimen, but nothing that is harmful for the baby as well as I maintain a gluten free diet. The baby which by the way is a BOY!!! will get blood cord testing done at time of birth. The chances are low that he’ll contract the lyme as long as I stay on my regimen but we’re saying a prayer.
The scary part will be after the birth. I’ve heard mixed stories of some woman saying the symptoms stay away like their body healed itself permanently and I’ve heard others say the symptoms all come back after the hormones level back out. We’ll have to see what happens- I pray I’m one of the lucky ones. As for now, I will enjoy every single moment of this pregnancy and continue to thank God for the miracle growing inside me.
So in closing, I can not warn you enough, please be safe this summer. They are calling for one of the worst tick seasons ever. Check your body, check your kids and check your pets. This disease is nothing to mess with. There are people who have gone through much worse than myself and continue to suffer everyday. People get misdiagnosed everyday with things like Lupus, MS, ALS and much more. Advancements are being made in research and better diagnostic testing, but there is still a long way to go.
I hope this blog helps someone out there that may not be getting the answers they need. You know your body better than anyone, don’t let anyone make you think you’re crazy if you are experiencing symptoms that no Dr. can seem to diagnose. Lyme disease if often called the Invisible Disease, but as someone who has gone through it and will continue to go through it, I’m here to tell you it’s real and it’s closer than you think. Please protect yourselves!
Namaste My Friends,
Me and my baby bump!
** There’s a movie on Amazon I recommend to watch if you are interested in learning more about Lyme Disease- it’s called “Under our Skin” and there’s an “Under our Skin 2” as well.