Do you ever feel like living with a chronic illness is a long drawn out journey with no end in sight? You feel like going another mile is just way too overwhelming and you’re so focused on your pain that you can’t look around to view the scenery.
[If you haven’t read the beginning of my story you can begin here with When Everything Changed]
“You Don’t Have Lyme, You’re Just Stressed Out”
In August of 2009 when my primary doctor called me she said, “Your Lyme test is positive but I think it’s a false positive, I’m pretty sure you don’t have Lyme.” When I asked what she thought I had, she told me that I was really just under a lot of stress because after all “you are a stay-at-home mom, and just had your 4th baby and well, you are homeschooling.” Arghhh!
I’m pretty sure fumes came out of my ears, you know like in those cartoons from long ago! How frustrating and demeaning. I was scared and sick, needing answers. I had already been told by a number of doctors that I was just stressed out. I think that must be what they tell you when they don’t know what to tell you.
I didn’t accept her answer and politely told her that I didn’t appreciate her diagnosis. She offered that I see a doctor down the hall for a second opinion. She said that this doctor was seeing a lot of patients who had Lyme and that she could tell me for sure.
I was transferred to the front desk where I made another appointment but this time with the doctor down the hall.
When the day came I drove myself back to the doctor’s office and waited patiently for my appointment. I ended up waiting an hour to see this doctor. When it was my turn I walked down the hall, did the weight and height thing, gave the nurse the run down and waited some more.
Finally, the doctor came in, asked me a whole slew of questions, did the evaluation and then proceeded to look through my lab results. “Yep!” She said, “You have Lyme, and from the antibody results you are chronic.” “Ok! So what does that mean?” I asked.
She proceeded to tell me that I had a Lyme infection and because it wasn’t caught early it’s now chronic. She told me I’ve had it for some time but she thought she could get me better in 4 months.
I was thrilled that I had a diagnosis and even more thrilled that I’d be better in 4 months. I’m not crazy, I’m not stressed and apparently, I’m not allergic to my kids. I was actually so excited as I walked out of there. I had a real diagnosis, a real reason for all the debilitating symptoms.
I had no idea what Lyme Disease was or what I was in for. I had two prescriptions for antibiotics that I had to start right away and the research junkie inside of me wanted to learn everything I could about what I was just diagnosed.
At that point in time, reading comprehension was a very difficult task but I went to the library anyway and checked out an armload of books. Yes, there are still libraries and real paper books and I LOVE them both! I get that from my Dad.
I read about Lyme disease from a scientist who went way over my head.
I read about it from Paula Murray‘s book The Widening Circle, who was the woman in Lyme Connecticut who first realized that so many in her town were getting ill with the same thing and that there had to be a connection so she called in the CDC and eventually Lyme disease was named after this town in Connecticut.
I read online about Lyme and I contacted a friend of a friend who had Lyme.
What I came away with was despair. No one was getting better, people online were talking about how they had been severely ill with it for 10 or 20 years and they were still sick after losing all their money, their house, their job and their marriage. They went everywhere in the country to every clinic and well-known Lyme doctor and yet they were still sick. I became depressed.
I didn’t want to be that person who traveled all over the country to see every doctor who claimed they had “the” cure for Lyme Disease. So, my husband and I prayed a lot for wisdom and direction and for healing.
I was still hurting, my mind still wasn’t working well, I was fatigued and I was pushing myself so hard to be a normal wife and mom, trying to keep up but I wasn’t doing it very well.
The antibiotics made me so incredibly sick, and so I was sick with Lyme and I was sick because of the medicine.
My poor husband would be at work and then have to comfort me when I called him crying and telling him I didn’t know how to go to the grocery store. He’d then come home to help with dinner and to help the kids through the school lessons that I couldn’t make sense of. He deserves “Hero of the Year” award for sure!
Almost 6 years now after that diagnosis I am thankful that we proceeded the way we did. We tried to be faithful with what God was giving us and the direction he was leading us. Sometimes that means being patient when you don’t want to be. Sometimes that means enduring the hardship, pain, and suffering and waiting on the Lord.
There are huge gaps in my story that I’ll fill in later but to give you hope, we are doing better than we have in years. We found a new doctor who we’ve been seeing for a year now and he has made such a huge difference for us in our healing.
We’re not completely well, we have minor relapses, but once again we have hope.
If you’re just finding out you have Lyme, hang in there. Try to learn about Lyme and the different treatment protocols. Pray for wisdom as you choose which is best for you. It always helps to seek out someone who has been walking the Lyme road.
Remember to look for ILADS trained Lyme Literate physicians or at least a physician who believes that Lyme is a chronic disease as well as the many co-infections that go along with the infection.
Understand that chronic Lyme can set off a huge inflammatory response throughout your body causing secondary problems that will also need to be addressed. For more information about Lyme head over to Lyme Disease, What It Is and Why You Should Care.
An Entire Family with Lyme?
I’m a Lyme Mom. I have Lyme disease and all 4 of my children have it. As a matter of fact, so does my husband.
Many times I’ll get the question, “how can your whole family have Lyme?” to which I usually chuckle and say, “well, a family that plays together gets sick together!”. On the inside, I find myself grumbling and asking, yeah, how can my whole family have this? It’s very frustrating explaining our situation to others and very difficult to reconcile in my own heart why this has happened to us!
“Health is not valued until sickness comes.” Thomas Fuller
I’m not sure exactly when I contracted Lyme disease. I suspect I was bitten by a tick when I was pregnant with my son in the fall of 2006. But it’s hard to say because sometimes I wonder if I’ve had it since I was a child and then reinfected. My health also suffered a great deal after the birth of my youngest daughter in 2000.
My Declining Health
Not too long after she was born I was diagnosed with plantar fasciitis. I walked 3 miles a day while I was pregnant and the podiatrist told me that walking so much with the extra weight of the baby was the reason I was having intense pain and could barely walk on my poor feet. I went to physical therapy, bought custom-made orthotics, got a few steroid shots and I was on my way.
Shortly after this, I began having heart palpitations which felt as though they would make my heart leap out of my chest. I went to the doctor and I had an irregular EEG so I was sent to a cardiologist for a nuclear stress test. I was so frightened, at the time I had 3 young daughters and heart disease runs in my family. I had struggled with high cholesterol since I was 18, despite diet and exercise, so of course, this consumed my thoughts.
In the end, all tests were clear and the doctor told me everything was fine, except I wasn’t fine. Off and on I would have horrible heart palpitations along with fatigue. I was sure I was going to have a heart attack, especially when I would lie down at night to go to sleep. My primary doctor told me that my heart palpitations were most likely caused by anxiety and maybe too much caffeine, so I did what I could to adjust my lifestyle and I stopped drinking coffee.
In 2003 I came down with the flu. That year was one of those “epidemic” years where the flu got an early start. My 3 girls and I all got very sick one right the other. Thankfully, the girls recovered just fine but I, however, didn’t recover for another 2 or 3 years.
I continued to have upper respiratory problems, shortness of breath, coughing up phlegm, dizziness, shallow breathing and coughing so much I thought I felt like I was going to pass out! I often felt like I couldn’t breathe out and that my breathing would get stuck. Naturally, I went to the doctor who sent me to an asthma specialist and she said I had asthma. The problem with that diagnosis was that the medications and rescue inhaler made me worse.
Allergic to Everything
I began having allergic reactions and breathing episodes whenever I was around chemical smells, for example; cleaners, shampoos, perfume, body lotions and especially the smell of cigarette smoke. I was so afraid to leave my own house and as if that wasn’t scary enough I began having reactions to food. I felt as if I had become allergic to everything.
I began to notice that every time we went out to eat I would begin to get sick and felt as though I was going into anaphylactic shock. My blood pressure dropped, my throat felt funny, swollen and like I couldn’t swallow, I became very dizzy and got very sick to my stomach. The only thing that seemed to help was taking 2 Benadryl and going to bed. I would lie there and just keep saying to myself, “relax, breathe, you’re going to be ok!” Hindsight – I should have gone to the ER.
I went back to the doctor and she said I was allergic to sulfites. I did some research and couldn’t believe how many food items had sulfites in them. I also couldn’t believe that just eating a salad at a restaurant would expose me to the very thing that would set me off. I felt so helpless, I felt bad for my friends and family when they wanted to go out but I was too afraid.
I went on a very strict diet avoiding preservatives of all types, I avoided smells, perfumes, and dyes in all of my products and I began to have some relief. This didn’t alleviate my symptoms when I went to church, the store, or even the doctor’s office. I became very aware of how the smell of someone’s hairspray or shampoo could be dangerous to someone like me.
Miscarriages & Increased Pain
In 2004-2005 I had two miscarriages and by the end of 2006, I became pregnant again later giving birth to my 4th child. In the beginning of my third trimester though I began having extreme fatigue, terrible joint pain, and lower back pain. I had chronic sinus infections, pink eye, and those heart palpitations came back but nothing would ever show up when I went to the doctor.
By the time I had my son my right shoulder was hurting so badly I could barely lift him or hold him on that side. When I would rise from a sitting position to standing I would get stuck because of terrible pain in my lower back and my sciatic nerve would send the most horrific pain down my backside and into my leg. I was stiff, fatigued and I felt like I had aged to around 90 years old.
My pain always increased at night making it impossible to get comfortable or sleep. Simple things like making a meal caused intense pain and burning up and down my back. Ibuprofen and other OTCs did nothing to help.
I was extremely fatigued, it was like nothing I had ever experienced, not even pregnancy. I would fall asleep during the day, even while reading out loud to my kids or if I would lie down for just a minute my kids would come and shake me awake and I would learn that several hours had passed. At night I would sleep so deeply that I wouldn’t hear my newborn son cry. I knew something was very wrong because I knew that mothers hear their babies even when they’re exhausted.
When my son was 9 months old I began having severe pain in my ankles and the muscles in my calves were so tight nothing could relax them. I went through physical therapy for Achilles tendonitis but it wasn’t helping. It became so bad that walking was just too painful. I couldn’t get up in the middle of the night to get my son because my legs and feet were so still and painful, I felt like they just wouldn’t work and my body was too stiff.
In the morning, I would have to sit on the end of the bed and do stretching exercises for 5 or 10 minutes just so I could hobble out of bed and walk like a 90-year old down the stairs.
I remember counting how many steps it would take to go from the kitchen to the living room or from the parking lot into the store. Counting steps in order to accomplish tasks with the minimum amount of pain possible.
I was also having all sorts of problems with my stomach; acid reflux, throwing up for no reason, pain when I drank water. I had night-time chills to where I would shake uncontrollably. I felt like I was freezing cold no matter how much I bundled up.
As time passed I began noticing that I was having memory issues, in fact, I couldn’t recall memories from my childhood which really scared me. I had difficulty thinking, reading, comprehending and problem-solving. I couldn’t do simple math in my head, simple tasks became impossible because I didn’t know how to go about them, and I began to have constant, unrelenting pain from my neck down to my feet. Burning, stinging, nerve pain along with muscle and joint pain. It was the worst pain I had ever experienced.
As my pain increased and my symptoms kept growing, I began having anxiety, depression and anger outbursts, sometimes feeling so much rage inside. I was terrified, I didn’t know what was happening to me. I remember asking my husband if I hit my head because my brain wasn’t working and I was convinced I was suffering from early onset Alzheimer’s.
By this time my son was almost 2 so in two years time these symptoms grew out of control. I had been to my doctor, I had lab work done, and I had x-rays. I went to the podiatrist, 2 different physical therapists, a pulmonologist, counseling and my chiropractor.
My husband and I were scared. We knew something was very wrong and at that point when the fear really set in I remember my husband praying for me and asking God to please show us what the cause of all of my health problems was.
At the recommendation of a friend, I decided to visit a new chiropractor. My pain was so severe that I was sure my regular chiropractor had broken my hip. The new chiropractor I went to treated me for 4 weeks and I only grew worse with each treatment. He finally suggested that I get a Lyme test. Although I was very sick, I thought he was nuts. I told him that I had never pulled a tick off of me and I certainly had never had a bulls-eye rash. What was Lyme disease anyway? Didn’t that just cause arthritis? He assured me that Lyme was much more and that I might just be surprised.
I reluctantly asked my primary doctor for a Lyme test while also getting muscle relaxers and x-rays to see if my shoulder, back, and hip were all broken.
Diagnosis Lyme Disease
Quite honestly, I was really surprised when that test came back positive. As I look back now, I see how truly blessed I was that I was able to get a diagnosis. Many people go for 10 or 20 years without ever knowing.
Lyme tests are not very accurate so it’s very difficult to get a positive test.
Lyme symptoms can happen right away and if they do count your blessings because typically there are no warning signs. The tale-tell bulls-eye rash only occurs in about 25% of early Lyme infections. Like many who get Lyme, no one in my family had the classic bulls-eye rash and none of us got the initial fever or flu-like symptoms, our symptoms began slowly over time.
This only begins my story and believe it or not, this is just a portion of my medical history. I hope that you’ll understand more about Lyme disease as you continue to read my story and that you’ll see how you too can abound in the hope that God can give while living with a chronic illness.
Read part two of my story Diagnosis Chronic Lyme Disease