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.

It also might be the longest post you will ever read on this blog.

 

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I know that most of our readers visit us to see cute home decor ideas and yummy recipes, not to read about our personal issues. I promise that our next post will be something on the lighter side, and I won’t be hurt if you skip this and revisit then. 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.

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 I knew 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.

A random snapshot, but one that shows how sick I was beginning to look.

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.

On Thursday of this last week, I received a positive result on a lyme test.

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.

picture with my daugher

She is always my co-pilot in bed on my sicker days

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:

***UPDATE: Read my current post on how I have been successful in my Lyme Treatment HERE***

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

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{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.}

Comments

  1. Dearest Amy, thank you for sharing your story. Yes, it IS helpful, and much appreciated. You have my prayers and best wishes for a full and rapid return to fabulous and glowing health!!

  2. Thank you for sharing – you are very brave. 🙂 I’ll be thinking of you, saying prayers for you and sending you strength to continue your battle against this disease.

    • Thank you, Amy. I so appreciate the prayers…I don’t think I am brave just desperate! 🙂 but I am also hopeful now that I know what I am dealing with, and that makes a big difference. Have a wonderful day!
      Amy

  3. Amy, it’s very good that you shared this information. Twenty three years ago, I lived in a standard Minneapolis suburb, with a yard, a small garden and a lovely park in the next block; a park with woods, a creek and all kinds of creature visitors. It was not a place one worried about much. I’m an allergy person, so when, after pulling weeds around the patio, I got a couple bites, I didn’t think a thing about it. My body over-reacts to spider and mosquito bites. That was late June. On my birthday, July 5th, my son commented that I should quit Dayton’s and go to work for Target, as I had a big bulls-eye ring on my upper leg. We all laughed, but again, didn’t think much about it. In the next few months, I began experiencing many of the things you mentioned. My doctor tried a couple of avenues, but nothing worked and I too, was told most of it might be depression, and possibly early onset arthritis.

    At the end of year, my husband’s employer switched insurance and we had a new clinic. By this time, I was nearly non-functional at work, unable to concentrate or complete a task, and the pain was unbelievable. Maybe I just lucked out, but my new doctor . . . a woman . . . took blood tests. She back to say it was either Lupus or Lyme and I needed more tests. We got those, and it was Lyme. At that time they had doubts to effectiveness of treatments, since I had already been ill for six months. I was started on IV treatments, but because my inflamed joints had caused me to fall easily, I broke my ankle and was in a cast so a nurse came to our home twice a week. to check and clean the shunt. I did my own treatments twice daily. Things were going much better, but by the third week, the treatments were making me quite ill. I was severely allergic to the meds, so we switched to a new one. After my cast was off, I went back to work but had to continue 2 infusions daily, so was allowed to do one at work. I had a wonderful boss.

    After treatment, I was able to get pretty much back to normal. Have had arthritic type joint and muscle pain, My eyeglass subscription was changed a few times until something was the right fit. They seemed puzzled by that. And of course, from then on I was not allowed to donate blood. The main thing we noticed was that I caught every little germ and illness around me, and was left with a run-down, tired metabolism. I lost weight, but unlike now, at that age, I was thin and really couldn’t afford to lose. I was fortunate; it did not enter my spinal chord; I didn’t have as much loss of muscle control as some do, my speech was never affected.

    I hope you continue on the road to recovery. People don’t realize how severe those little buggers’ bites can be! Good luck.

    • Cheryl, you are so right–I am sorry to hear you have been afflicted by Lyme as well. It is not just the disease that it is hard, but the challenge of wading through the difficulty of the medical system! Not what a sick person needs 🙂 Thank you for sharing your story, it validates the experience I had in struggling to get a diagnosis. I am glad to hear you have recovered and I hope and pray you will continue to do so!

      Thanks so much for your well wishes, and my best to you as well.
      Amy

  4. Wishing you a speedy & permanent recovery ! Sometimes we need to take things into our own hands- so glad you did!! Bless you!
    Paige.Rose

    http://www.TheQuaintSanctuary.blogspot.com

  5. Thank you for sharing your story. My son is also suffering from this disease that was not detected for a very long time. Last year his elbow hurt, the pediatrician sent us to an orthopedic that gave him exercises. Two months later he was experiencing increased heart rate, difficult time breathing, doc felt it was anxiety. Then the school nurse called thinking that he broke his knuckle because his it was very swollen. I brought him to e minute clinic and that doc asked if he was ever tested for Lyme. Thank God for that doctor. My son is currently under the care of a lyme center in Boston Children’s Hospital and has been on meds for 4 months. One of his knees the swelling has gone down and he is not as moody 🙂 but it is a continuous battle but now we have an answer as to what it was. So mre people need to share their stories so that early prognosis can be detected.

    • I hate to hear that your son is also suffering. Thank goodness for that doctor, how lucky he knew to check for lyme. I wish more doctors did. I hope the meds are helping! Its a long, long road to healing I hear but I will pray that he continues to heal.

      XO,
      Amy

  6. Donna Wisdom says:

    Thank you for sharing this story. I know that God’s divine appointments have amazing results and will pray and believe that through the help of this doctor and God’s healing power you will be strong and well. God bless you!

    • Donna, that means so much to me. And I know you are right 🙂 I have already benefited tremendously from prayers for my healing, and gratefully continue to accept them. Know that I am so appreciative.

      Have a wonderful day,
      Amy

  7. I’m so glad you have shared this story and I suspect you will save someone else out there from years of anxiety and pain by giving them the courage to switch doctors and continue to press for answers. God bless you and heal you!

    • Jane, I hope you are right! I would love to save someone from the difficulty I had in obtaining a diagnosis. I am hopeful that this message with reach the people who need to hear it. Thank you so much for leaving me a note! Have a wonderful day.
      Amy

  8. Thank you for sharing your story. I have been on antibiotics and herbal supplements for a year and a half. I struggled for about 6 months, not knowing what was wrong with me. We had moved from Kansas to Connecticut and didn’t live there very long before I starting feeling sick. Once my naturalpath dr tested for Lyme/I myself was excited to know what was wrong with me. I moved about a year ago to Iowa, but still see my doctors in Connecticut. We do phone visits and send me the tests to have done where I live now, and send results to Connecticut. It is a very costly disease. I know we spend over a thousand dollars a month. I feel like I have lost 2 yrs of my life!!! It is hard some days to get anything accomplished!!! It is also hard for friends and family to understand. Good luck to u!!!!

    • You are so right–lyme is a very isolating and yes, a ridiculously costly disease. We have to keep loudly complaining in hopes that will change in the future. I hate to hear you suffered as well, but I am glad that you obtained a diagnosis and found a doctor to help you. Thank you for sharing with me, I can relate exactly to what you are saying! Blessings and healing to you as well!

      Amy

  9. Thank you so much for sharing your story. I have been to so many drs complaining of all these symptoms and not one of them has tested me for lyme disease. I have been diagnosed with fibromyalgia, depression, anxiety, chronic fatigue, arthritis, ADD among other things. They just keep slapping bandaids on my symptom with so many drugs. I have slowly been weaning myself off many of them. I have felt like I am crazy. I am exhausted and then I isolate myself. It is so comforting to know other people are experiencing the same thing I am. Your story helped me so much. Thank you and I hope you continue to heal from this.

    • Oh Bethany,

      I am so glad that my story helped you. I so hate to hear you are suffering but please read more on lyme as it sounds very likely it could be what you are struggling with. I hope the resources I have provided will help you to get better information to guide your recovery. If I can do anything for you, please let me know. I hope you get some answers and some help very, very soon. More than anything–I hope you feel better!
      XO,
      Amy

  10. Amy, I applaud your bravery and courage to tell your story! I know all too well how difficult it is to diagnose and educating people is so very important in the quest for Lyme awareness. I am excited that you’ve found a doctor to treat you and pray that your body heals quickly! And, the statement about us Lymies not looking sick, but actually be the most sick out there, is so true. According to my doctor, our immune systems are shut down in many more ways than even an HIV patient. Hang in there and know that you are being prayed for! <3 Janis

    • Thank you sweet friend! Sending prayers and happy thoughts your way as well. We’re in this together! Thank you for your support and for sharing so much with me, what a blessing that has been. I know you too will dance with joy again!

      XO,
      Amy

  11. Hi Amy – I found your story – and your blog – because Janis shared your post on FB. My story is similar to your in that I don’t share it at all on my blog – and also in that I do not test positive for Lyme. The last time I was tested (and all of the times I was tested) i only have ONE positive IGm band on my Western Blot test… I was very, very lucky to find an infectious disease doc in my area (who takes insurance) and is a Lyme specialist. After fighting with several doctors who didn’t know what they were talking about – and insisted that I had MS and Lupus – I made my way to her. I did 5 months of oral treatment (knowing that insurance would not pay for IV without a positive test) and got pretty much all better. That was almost 4 years ago – and I’ve been working up my courage to go back and see her again soon as I’ve got a bunch of symptoms starting to crop up…
    By the way, I’m just going to assume that the video you posted is Under Our Skin (not even gonna click on it). There is a doc in that film (one of the ones who say there is no such thing as chronic Lyme) who treated ME for Juvenile Rheumatoid Arthritis in the late 70’s and early 80’s – I was diagnosed at the age of 4 – with what was CLEARLY a Lyme knee… (hindsight is 20/20…)
    I live in the Lyme Capitol of the World – and most doctors here STILL don’t know what they’re talking about – it’s terrifying. I know more people who have had Lyme (and co-infections) than people who haven’t. Just TODAY my sister in law told me that my 14 year old nephew has a fever and a swollen knee. His first bullseye was about 10 years ago…
    I’m so glad that you’re finally settling into treatment – you’ve got to start somewhere! Please know that I’ve seen some pretty desperate cases…and we are all doing fine. I won’t say perfect…but dancing and enjoying life for sure!
    Good luck with your journey – and I’m glad you told your story – it really may help someone!
    -breida

    • Thank you so much Brieda–your story means so much to me. Sharing it will only help others and your encouragement gives me so much hope! I hate to hear that so many people where you live are suffering, it is time for the medical community to do better for all of us with this. {Yes, of course the video is Under Our Skin–I should have said that} I hope your nephew recovers quickly. Thanks again for your support and sharing your story.
      XO,
      Amy

  12. Denise Davis says:

    Amy, Thank you for sharing your story. It is amazing that doctors are still unable to diagnose Lyme disease. It is true that we must be advocates of our own health. We DO know when something is wrong. So glad that you are finally getting the answers and treatment you need for a healthy recovery. Good luck!

    • Thank you so much Denise, it has been a journey for sure but I am feeling hopeful now that I know for sure what is wrong. I am just hoping I can help others move more quickly through the medical part than I did. I hope you have a wonderful day, and thanks so much for taking the time to read my {long!} story and leave me a sweet note!
      XO,
      Amy

  13. Lilli Smith says:

    So sorry to hear that you’ve been so sick! I can’t even imagine how hard that is with one little one, not to mention three kids! Not knowing what was wrong must have been awful too. I’m so glad you’re on the road to recovery now, although it sounds like a long road ahead. My thoughts and prayers will be with you. Hope to maybe see you in Arlington in September. – xoxo, Lil

    • Thanks–you are so sweet! I am really hoping to be up for the September reunion. I would love to catch up! Hope you are doing well.
      XO,
      Amy

  14. Jan Kelsey says:

    Dear Amy, Thanks for sharing your story. I’m so sorry about all your troubles. I had no idea you were dealing with all this. Prayers and all good wishes for a complete recovery. You deserve nothing less. Love, Cousin Jan

    • Thanks Jan,

      You know….I remember you mentioned lyme when we spoke about how I was feeling way back at Whitney’s wedding–good for you for picking it up! I remember saying “that’s what I thought at first too”. I should have listened more to you!!! 🙂

      Hope you are doing well, thanks so much for your note.
      XO,
      Amy

  15. amy, great piece. keep talking. people need to know what patients go through on a daily basis to heal. i hope your journey to full health is quick. xxoo

    • Thank you Sharon, that means a lot to me. Its hard to put this out there, I just hope I can help someone not go through what I did.

      Have a wonderful day.

      Amy

  16. Lynwood says:

    In April of this year, after a full year of wierd and worsening symptoms and countless doctors visits and tests, I finally realized I might have Lyme and was able to see a Lyme literate doctor, confirm my diagnosis, and begin treatment for Lyme, bartonella, and babesia.

    Last spring, I started feeling fatigue and light muscular aches. My doctor ran an ELISA Lyme test, which came back negative. I didn’t think twice about Lyme after that test result. A month later, I started having a light numb feeling in my right leg. I went back to the doctor who said this was probably a low thyroid issue. My thyroid test was just outside the normal range and I was put on thyroid hormone. I felt pretty good for the next few months.

    In November, my right hamstring starting have a pre-cramp feeling that wouldn’t go away. It was aching all of the time. I thought it might be due to my “thyroid issue” and went on a course of changing my thyroid medicine levels over the next few months in hope that this would fix me. My leg pain got worse and spread to my calf and my knee and to my other leg. It got to the point where standing even for a brief period of time caused me great pain. I woke up in the mornings feeling as if I had already walked 10 miles despite having done nothing strenuous.

    I saw specialist after specialist; endocrinologist, neurologist, orthopedist. I was tested for MS, Lupus, and you name it. Each time, I was convinced I had whatever I was being tested for. Each test came back negative. I was convinced that I was going to die and that no one would be able to figure out what was wrong with me. I literally made plans with my wife for what she should do to take care of herself and the kids after I died. I had to stop walking my dog. I saw people in wheelchairs and was convinced I would soon be joining them. I had difficulty sleeping and would wake up drenched with night sweats and be unable to fall back asleep. My regular doctor eventually told me she thought this was all in my head.

    I eventually went off the thyroid medicine completely hoping that would help my legs. It didn’t, but I did another thyroid test and my levels came back completely normal without the medicine. Maybe I didn’t have a thyroid problem after all? Then this spring I happened to talk to a couple of people who had Lyme. Upon hearing their stories and symptoms and reading the article linked below, I realized I might very well have Lyme despite having two negative blood tests. I thought back to a camping trip I had taken in the spring of 2013 and the “poison ivy” I had come down with about a week after the trip. Maybe the “poison ivy” wasn’t poison ivy after all. It wasn’t a bullseye rash, but it was a rash on my lower abdomen which wouldn’t have been exposed to any poison ivy. And it came a week after exposure and, I learned, poison ivy affects you much faster than that. And my fatigue and muscle aches started shortly after the rash.

    I went to a new regular doctor in April 2014 who tested me for more rare diseases and also ran another Lyme test at my request. They all came back negative. I remember how sad i was that my Lyme test was negative. Wierd, I know, but I just wanted an answer. Despite my negative Lyme test, my new doctor agreed to put me on a course of oral antibiotics (presumbably because of my symptoms and the fact that all of the other dozens of others tests had come back negative). Then I was able to get in with a Lyme specialist in Rockville at the end of April 2014 and have been on various oral antibiotics and anti-malaria drugs (for the babesia, a parasite transmitted by ticks) since then. I expect my treatment to go on for a while. I still have leg pain and numbness, but at least I have hope.

    Some important things I’ve learned: the typically blood tests are often inaccurate because they are looking for an antibody reponse to the Lyme bacteria, something which isn’t always produced by your body. Also, that Lyme should be diagnosed clinically based on symptoms rather than just a blood test. Finally and sadly, most doctors don’t have a clue about Lyme.

    I highly recommend an article that ran this spring in Arlington magazine. Here it is…

    http://www.arlingtonmagazine.com/May-June-2014/Lyme-Disease/?cparticle=1&siarticle=0

    Take care and best wishes on your road to recovery!

    -Lynwood

    • Thank you so much for sharing your story. I hate to hear you have had the same long road I have, but I am glad you are on the way to recovery. I truly appreciate that you spent the time to share your road as it validates the long journey I have had. How this medical mess is possible in this day I cannot comprehend.

      That is an excellent article and I will add it to my resource list.
      Best of luck with your fight!
      Amy

  17. Michelle says:

    Amy,

    Thank you for your article. I had a tick bite with a bullet rash the end of April and was treated with 2 weeks of amoxicillin. I started getting headaches the end of May, which then has progressed to some other symptoms that I recognized from your article. I have just returned from my family doctor from getting blood work, including testing for Lymes. Thanks to my FB friend for sharing your article and getting me headed in the right direction. I looked at the link of your doctor in Aldie. Which doctor in that practice do you see?

    Thank you!

    Michelle

    • Hi Michelle, UGH, I hate to hear you are going through something similar. Please know that even if your tests come back negative you should not give up. I see Dr. Heyman, if you can’t wait for him (it takes about 2 months) I can give you some other names I have heard are good and improving lyme patient’s health, feel free to email me directly at 11magnolialane@gmail.com anytime. Best of luck with your recovery!
      Amy

  18. My Dear,
    I hope and pray you get better and better. I had a friend many years ago that had Lyme’s, she was in her late teens and had a smart Dr. They, together caught it early.
    I will send you and yours good thoughts. Oh, and isn’t it wonderful to have a good and true man at your side?

    • Thank you for your kind thoughts, they are appreciated! And yes, I am lucky 🙂 my whole support team keeps me going. Everyone who has commented has also made such a difference.

      Have a wonderful day,
      Amy

  19. Well, what do you know? I have been fighting Lyme for more than 10 years! Unlike you, I immediately had a positive test result. It was the doctors and how they disagree about treatment that caused so much of my problems. I did become very sick, but functioning. That was over a year ago, and after meeting a Neurologist who would treat me “until!”, I have been so much better. I have too much to write, but I will say that my opinion of the sudden rise in cases is because of all the misdiagnoses. Good luck with your continued battle. It is never really over. I’m not sure if you know this, but when you comment back to people on your blog, they don’t see it unless they come back to this post.

  20. Hi Amy:
    I feel like we are kindred spirits of sorts. For the last three years I have been very ill, mostly home-bound. Your story sounds very similar to mine. Prior to 2011, I was living a full life- a fulfilling career as a physician, enjoying life living in Minneapolis, active in my church, enjoying my friends and family. Over time I have been diagnosed with multiple autoimmune diseases as well a autonomic dysfunction and chronic Lyme Disease. I started Lyme treatment in January 2014. I understand the relief and validation you felt in finally finding out answers.

    I hope that your treatment is going well and that you feel you are making some progress. I know this process can be slow. Sending you prayers!

    Oh also, I should mention- I started a blog after I got sick to try to help provide me with some purpose and this has been a blessing for me. I look forward to following you and your blog.

    Blessings to you!
    Amy

  21. I just read this, Amy, and I applaud you for sharing! Hopefully, the information you provided and comments from others will help someone that is suffering and not diagnosed. Of course, a diagnosed person would benefit too! I have a friend that has suffered with Lyme for years and spent some time hospitalized when she lived in the NE. I’m not sure if you’ve ever watched “The Real Housewives of Beverly Hills” but one of the women, Yolanda, suffers from Lyme. She’s married to David Foster ~ musician, composer, etc. She’s very real and one of the most classy ladies of all the shows. 🙂

    I will hold you and your precious family in prayer and send positive, healing energy your way. Good health is so precious and you certainly deserve healing.

    xo
    Pat

  22. I recently found your website and noticed your Lyme category. Why oh why are doctors refusing to test for this up front. Even if they don’t believe it they could still run the test up front and get the answer and treat people to prevent all these issues. And even if they don’t test for it give the doxycycline to hopefully prevent the progression of the disease. My ex husband suffers from the disease and unfortunately I believe is the cause of mental illness, which of course he doesn’t realize is a problem he thinks it is everyone else out to get him. Even his Lyme literate doctor poo pooed it when I brought up the serious mental issues. A friend also suffers with serious joint issues more than likely from Lyme disease. I wish you well in your treatment. Fortunately you have the support of family and friends and your blog community.

  23. As soon as we moved to Tn, my son got it twice. The first time he was only in kindergarden and I worry about the long term effects all the time. Thank you for your article. i am going to take this to my PA and really pressure her to take this seriously.

    Thank you

  24. Tracy Devena says:

    Amy. I’ve been going through the same symptoms. Have seen numerous Drs and I get the same stories. Depression . pinche nerves, need a chiropractior, nerve issues all the same thing s. With no treatment helping . please. Help me get in touch with the Dr that helped you. Or what test s can I take to see the if I’m positive for Lyme disease. Or call me 308 631 0326

  25. Rachel Davis says:

    Thank you for sharing . I am just starting my journey and have such a similar story that it is scary. I have been sick with all the same symptoms for years and have been passed around and told that nothing is wrong. I was always very active and am a military veteran so when I couldn’t keep up with my kids I knew something was very wrong. I am so scared about our future and financial security due to this illness. Thank you again for posting and sharing it has helped more than you know.

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