When life gives you a twist of Lyme Disease

This is the post I have been trying to get the nerve up to write for almost a year.

 

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I know that most readers visit us to see cute home decor ideas and yummy recipes, not to read about our personal issues.  However, I have decided, after much thought, to share my health story in hopes of helping even one person, and that outweighs any inclination I have toward privacy or our usual “putting only our best foot forward” mentality.

Some perceptive readers have inquired why my family has moved as much as Christy, a military wife for whom moving is a way of life. We have also moved several times in the last three years, you may have noticed the large number of Home Tours on our site? :) While at the time we glossed over our constant relocations online, I am now sharing the whole “behind the scenes” story. Three years ago my husband was unexpectedly transferred across our state to the coast of Virginia. It was a good opportunity for him, and while change is hard, we embraced the new opportunity and built a home that was truly a dream {tour it here}. At first things were great, summer was coming and we were living a few miles from the beach. We were settled in and I was happily blogging about all the projects I was completing in our little lake house. Being Type A and a DIY girl, that spring I spent much time attempting to make our new post-construction sandpit of a yard as presentable as I could.

While I knew that our yard had a proliferation of ticks thanks to the small pocket of forest behind us and therefore was obsessively careful with my children, I never thought a tiny insect the size of a poppy seed would eventually land on me, and wreak havoc on my life. In the late spring of that year (2012) I noticed a rash (though not a “bullseye” rash) and sudden numbness and tingling in my hands/arms, feet and legs. I became worried—even wondering briefly if it was lyme —it was prevalent in the area we moved from so it came right to my mind. This was a possibility confirmed by the {not-so} trustworthy “webMD”, and knowing lyme needed fast treatment (and if not lyme, I was wondering what the heck was wrong?!?) I made my husband take me to the doctor.  The doctor gave my rash a cursory glance and promptly told me I was having a panic attack and sent me directly home.

In the days following, I saw other doctors to try to determine what the tingling sensation was and heard everything from a compressed nerve in my back from doing yoga to vitamin deficiency to depression. Life continued on that summer, when suddenly a few weeks later I developed severe symptoms. My stomach burned painfully, especially at night, I suffered from vertigo, dizziness, anxiety, nausea, weakness,  shortness of breath and extreme, flu-like fatigue. I sought a GI specialist who prescribed prescription-strength acid reducers for my stomach pain.  I can see now that those drugs made me even more sick—likely the lack of acid in my stomach literally tore holes in my intestines {known as “leaky gut syndrome”, which further worsened my immune response.} The doctors started running tests…normal….normal they said, writing me off once they had exhausted their protocols. “You're just depressed” I heard over and over. I started to wonder if I actually was, so I took the antidepressants they offered me, but within minutes I had the sensation of electric shocks coursing through me. I was soon at a total loss as to what was wrong with me, and to say I was discouraged was an understatement.

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Disheartened by the patronizing and unhelpful attitudes of the doctors, I took matters in my own hands—diligently researching online for anything that could help and in desperation I began eating as gluten and sugar-free as I could. I saw a small improvement by the holidays, but still had no real answers. I continued to see doctor after doctor as more strange symptoms presented—like blurred vision {just wear your glasses more, the eye doctor said}, and became even more scared when I had strange reactions to over-the-counter meds like Tylenol which left the allergist I saw baffled. By the end of 2012, my husband and I knew something had to change. He requested what would become a career-halting transfer, and the "For Sale" sign went up in front of our cute little house. Caring for my children alone in a new city, while he worked long hours and traveled, was simply no longer possible, we had to move back closer to family.

Taken shortly before we moved, my husband is in the habit of letting me lean on him, in more ways then one.

This was taken shortly before we moved, my husband is in the habit of letting me lean on him {in more ways than one} even when my legs are weak and we had events to show up for.[/caption]

God truly saw us through our move—there is a bit more on that in this post—and we settled into a rental home and I started over with new doctors in the Washington, DC area. I had tests and more tests, but nothing useful turned up. I had days when I could barely get of bed because my legs were so weak, then a few days later I would feel almost normal again. I tired extremely easily, yet battled severe insomnia with migraine-like headaches.  I was cold all the time and weight continued to fall off me despite constant hunger, I was always needing to eat to keep my energy level up. The tingling sensation persisted, often worsening to a feeling that I could literally jump out of my skin-- “internal vibration” it is described, which is very accurate.

During one of my sicker bed-ridden bouts early last summer I reconnected via Facebook with a coworker I hadn’t talked to in many years. I knew she was battling lyme from her Facebook page, and joked about my own health issues in empathy as we messaged back and forth. She immediately wrote me back and said—“Anxiety, stomach issues, insomnia are major lyme symptoms—I am sure you have lyme!” She sent me information which I read with interest, and a video {I will share the link at the end} which while brilliantly informative, scared me enough that I convinced myself I wasn’t “that sick”. But still, I decided to pursue lyme testing last summer, even though the doctors I was seeing {a neurologist and GI specialist} were both shrugging it off. “It's possible” they said, but they didn’t seem to think it was likely. The lyme tests were negative. Last year, it became against the law in the state of Virginia {where I live} for a doctor to not disclose that lyme tests have a very high level of false negatives. In other words, patients need to know a negative lyme test does not mean you don’t have lyme. Knowing the inaccuracies, I persisted with the doctor to determine if lyme could still be a possibility, the answer was “no”. Apparently news of that law didn’t travel far.

Anyway… last summer I struggled to live normally, braced by having friends like Terry and my parents close by again. An opportunity came along to take a job with a company I had worked for previously and it was too good to pass up, so I convinced myself I was just not "that sick" and accepted the job.  Two days before I started work, I had a sudden immune system response to a new night cream I tried {yes an OTC night cream, must be some powerful stuff, huh?!} and I was again bedridden with severe lyme symptoms—headache, fatigue, lethargy--and in complete panic. I called a former neighbor who had been battling lyme for 10 years for her advice. She came armed with books, pamphlets and sympathy as we sat together on my screened porch, I remember how both of us were chilly outside on a 90+ degree day. She confirmed what my husband and I had finally wrapped our heads around, even though the doctors couldn’t seem to diagnosis it. I clearly had lyme disease. [caption id="attachment_17683" align="aligncenter" width="232"] A random snapshot, but one that shows how sick I was beginning to look.[/caption]

I started back to work, cleaning up my diet to extremes in hopes it would help—eliminating any sugar, and any gluten—never, ever. With working (thankfully my job is very sedentary) I was able to outsource things like grocery shopping and cleaning my house—things that had been barely manageable before with my fatigue {you can read more on the strategies that save me in this post here}.  We decided that after I trained for my new job, I would worry about the lyme. I did really, really well in the first few months of working—so much so that I convinced myself I could just manage my symptoms via diet and I would be fine. Then the holidays came. Holidays are stressful for most moms, working or not, and for bloggers it's a crazy time with the pressures of house tours and all the opportunities that the season and marketers bring. When the holidays ended, the adrenaline that had been carrying me through was tapped out. In the early months of winter my health spiraled downward.

By this time, it was clear that the disease had matriculated into my brain, while I had been “foggy” before, I started struggling more and more with simple mental tasks and even sometimes speaking intelligently. Words and thoughts would disappear from my brain mid-sentance, and I lived in fear that my diminishing memory would create a real issue—like forgetting to pick up my child somewhere or worse, I would have a car accident. I noticed I was finally having the joint pain that is such a marker of lyme disease, and my muscle fatigue worsened making standing for more than a few minutes difficult. While we looked in earnest at treatment options, I also sought new lyme testing, still trying to confirm what we were so sure of, but even the more sensitive lab tests came back negative yet again.

Then my husband and I attended our church Valentine’s dinner. We had come to the dinner with friends and expected to be socializing with them all night, when we were unexpectedly seated at a table full of people we didn’t know. God is good in his plan, within minutes I discovered the woman seated next to me, Rita, out of a room of hundreds of people, also had lyme. She had for as long as I had, and her tests were also negative as well, but she was doing great, having already been treated by a local, very reputable, Integrative Health Doctor.  We talked all night, her knowledge and optimism was such a gift. I know that God planted her right there to help me begin a path to healing.

Even after talking to her, I was still trying to decide among the different treatment avenues what would be best for me. I already knew I was allergic to many common antibiotics, and had developed strange sensitivities/reactions to mainstream medications during the lyme, so to say I was terrified to start a medication therapy was an understatement. I was worried my reaction would be worse than the disease.

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I decided {against Rita’s and other lyme friend’s advice} to at least to start through the convenient and insurance-friendly “infectious disease” doctor in our area.  That doctor begrudgingly started me on a 30 day course of antibiotics {doxycyclin}. The antibiotics did exactly what they would do to someone with lyme in the later stages—created a “herx” reaction sending me to bed with an excruciating headache and joint pain so severe I couldn’t walk as the disease died off and my body became overloaded with toxins.  A few weeks later the symptoms had abated and I experienced few days of feeling better, then suddenly my symptoms returned, and seemed more severe than before I took the medicine. I went back to the Infectious Disease doctor, who shrugged, telling me if it was lyme I would be better so I should go see a migrane specialist. I think I can consider that the worst doctor's appointment of my life.

Luckily, my time had finally come to see the Integrative Health Doctor Rita had promised would help me.  At over $500 a visit, with no assistance from insurance, making the choice to seek treatment with this doctor was not something we took lightly. The doctor went through a 30 or 40 item checklist of lyme symptoms, I answered yes to almost all of them. He essentially confirmed what we thought, that I was in fact suffering from lyme but obtaining the test result to confirm it was going to be the challenge. He explained that at this point I was too sick to make the antibodies to the disease, and those antibodies are what mainstream testing like the Lyme Titer and Western Blot are testing for. We spent a long time talking about the sudden, rapid rise in lyme cases, he likened it to the AIDS epidemic of the 80’s due to the adaptability of the microbe and lack of medical consensus on the disease. He ordered a long series of blood tests, tests he said most doctors don’t even know about, that could help establish lyme as we began he treatment process.

My initial lab testing with this doctor came back strongly indicative of lyme disease.  After 14 different doctors, two years, too many tests to count {with staggering expenses}, we celebrated something I never thought I would want to celebrate. Confirmation, vindication and finally a plan that might make me feel better. I have a long road ahead of me, likely 12 months of treatment beginning shortly with IV therapy. I recently decided to share my struggle with getting a lyme diagnosis on my personal Facebook page, and was astounded by the number of people who reached out to me with their own struggles with this disease.

I have kept all this very quiet, it's not me to seek attention for a health condition, and really I did not want to become known as that “girl/mom/blogger with lyme” rather than “Amy”. And I believe into each life some rain will fall, right? This is just my rain, who really wants to hear about it?

As my health worsened for me this spring, I finally started disclosing the real reason I had become so reclusive, why we'd moved again so soon and why I was essentially unable to do anything but work, care as I best I could for my family, and eke out a blog post here and there. My new doctor jokingly said to us and it resonated greatly, “Lyme patients—the healthiest looking bunch of really sick people you will find.” Most people outside of my most inner circle had absolutely no idea what I was dealing with.

As I said, this post has been written and rewritten in my head for almost a year, but I have come to be certain that lyme patients must help each other because the medical industry is completely failing us.  I am sharing my story (in such elaborate detail!) in hopes that someone else struggling to make sense of their strange symptoms might come to the same realization I did, but much more quickly. And, as patients, to have the courage to stand up to the countless doctors implying that lyme is just a hypochondriac diagnosis, or all in your head, depression or part of aging or hormones. I will list a long list of great resources at the end of this post, and welcome any questions, but I defer to the {included} sources for better explanations of how and why this disease has become a complete train wreck in the medical community. Please read them, chances are you know or will know, someone with the disease.  The numbers of infected are rising in huge amounts, few families will not be touched in some way. Lyme is more prevalent in certain areas of the country but it is spreading rapidly to places it never was before. [caption id="attachment_17685" align="aligncenter" width="225"]picture with my daugher She is always my co-pilot in bed on my sicker days[/caption]

The last two years of my life have been an unexpected journey. God has not once failed me, even when things have been very, very, scary-hard. My sweet friends, like Terry who hasn’t given up on me as a friend even though I am no longer much fun, has been a constant source of encouragement, always with a sympathetic ear. Christy has been my faithful cheerleader and kept this blog not just going but thriving. My parents have supported me in every possible way and sheltered my children from many of the ramifications of having a “sick” mom. My husband, oh my husband…God knew what he was doing when he gave him to me. He selflessly moved on from a job where he thrived, stepped into the role of the cook, the cheerleader, the chauffeur and most importantly has never, ever given up on me. His positive attitude never allows me to feel sorry for myself for more than an indulgent minute here or there. I realized the other day, my youngest, my daughter, doesn’t remember what it is like to not have a Mom sick with lyme, she doesn’t remember me when I had energy and clarity. I am so very hopeful that one day soon she won’t remember what it is like to have a Mom who was sick.

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"I have loved you with an everlasting love. I have drawn you with loving kindness.

I will build you up again and you will be rebuilt.

Again you will take up your tambourines and dance with the joyful."

{Jeremiah 30:22}

God gave me this verse early in my struggle, it has carried me through. I know that one day I will want to dance again, and that is enough.

If you or someone you know someone who might be in a similar situation, questioning if they have lyme, here is where to begin:   Lyme Symptoms Checklist Good article on lyme HERE Good article on the healing approach to lyme HERE Website for one of the foremost lyme doctors in the country. Website for my doctor (trained by above). Great article, this doctor does phone consultations Find a lyme literate doctor and other resources HERE. Lyme video—a must see! Please don’t let it prevent you from seeking treatment like I did {Under Our Skin} Excellent comprehensive article HERE.   Books you should read: Why can't I get better? Solving the mystery of Lyme and Chronic Disease by Richard Horowitz The Lyme Disease Solution by Kenneth Singleton  

As always, thanks for stopping by.

XO,

Amy New Headshot 2014 Small

icon-facebook-1icon-instagram-1icon-mail-1icon-pinterest-1icon-twitter-1NEW Google+ {Note: please do not comment on this post regarding treating lyme with Essential Oils. I will delete those comments, I am still researching that as a viable option and until I can advocate it 100% I am not including it as part of my story. Thank you for understanding. Book links are affiliate links.}

Christy | Amy | Terry

www.11magnolialane.com

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