My Lyme Story

*If you want to get to the diagnosis part without the history just scroll down to 2010*

1989 - I guess it started with a tick (as most Lyme stories do).  I was 6 years old and the year was 1989.  Before I was born, even, I was in the Sierra Nevada's in California EVERY summer for family camping.  And every year since then I have been camping there.  Our family LOVES the Sequoias and we have a favorite campground up there.  Now that we are all grown and married, my siblings and spouses (and a few kids now!) make a point of meeting there for a weekend each summer to camp, hike, and enjoy God's creation.  

But anyway -- when I was 6 years old, I came home from one of these family camping trips and I only remember bits and pieces of what happened.  I remember my mom being concerned because she found a "tick" in my arm.  We weren't sure how long it had been there.  I remember there being lots of discussion as I sat on a stool in the kitchen (best lighting there, you know) between my parents as to what the best way to remove a tick would be.  They knew the ways not to leave the head in there but I think they just wanted to make sure they did it right.  I also remember them taking great care not to "freak" me out.  I barely remember a sterile needle and some tweezers.  But I do not remember much about the extraction.

That's about all I remember about that.  My mom, however remembers much much more.  She remembers that I got the classic "bulls-eye" rash where that tick had been.  She said at the time she only knew that you go to the doctor if you get flu symptoms.  She watched me and I had no symptoms so she thought I was in the clear. 

1992 - Well, a few years or so passed.  I had some tummy troubles (but what kid doesn't?); I also had some frequent headaches that eventually got diagnosed as "childhood migraines".  I got glasses.  It didn't seem to help the headaches much.  It was also about this time that I started to complain to my mom and dad about "pains" in my arms and legs.  It's hard for a kid to describe pain and even now I don't quite remember what it was but my mom now recalls me describing (as best as a kid can describe it) as joint pain.  She was at a loss, though -- couldn't it just be growing pains?  And I wasn't really deterred from kidlife much by it.  So she tried not to worry about it.  And from what she knew about Lyme disease back then, the time frame had passed on which to worry about it being the cause.
I went the rest of my elementary, junior high, and high-school years with headaches and migraines.

2000-2003 - By college, my migraines were 3-4 days a week and I had a constant headache. I went to sleep with one, and I woke up with one. At the time I couldn't remember what it was like to go through life WITHOUT being in pain.  I learned to live with the pain.  I saw a neurologist to make sure there wasn't something crazy going on inside my brain and got the "all clear" from the doctor who said I probably had a lot of tension and he would put me on a low-dose antidepressant to see if it would help the pain.

It helped SLIGHTLY. But after a year, the side-effects of the meds were more frustrating to me than just coping with the pain so I went off of it.  I had on and off tummy troubles that I self-diagnosed as being lactose intolerant. Looking, back, however, I can see that my GI issues were not only limited to dairy.  They were related to gluten and also stress.  In fact, I don't think dairy had anything to do with it.

I was hardly limited by my woes and had a fun, full college time and was even able to travel multiple times internationally.

2004-2006 - I met my husband in my senior year of college.  We dated for a couple years and got married in June of 2006.  At this point I still had constant headaches and migraines and some occasional GI issues, and now had random hives that would come and go. But life was good! I was in love!  And I had learned to live with pain in the past so it was easy to set it on the back-burner.

2006-2007 - A few months after we got married we decided to start a family.  I had a fairly normal pregnancy. I hated most of it, though, because I was incredibly nauseous for the first 4-5 months, and then when that subsided I got kidney stones, and by the time those had passed I was so fatigued I could barely do anything all day.  But it was my third trimester so no one thought that was a weird symptom to have.

In June of 2007 my beautiful little girl was born via c-section (because she was breech).  We were so happy.  We enjoyed her newness and tried to make it through those first few months of sleepless nights.  She was a GREAT baby and so easy-going. 

 Five weeks after that c-section I got gallstones.  That was definitely the MOST painful thing I have ever experienced.  It was a week of searing pain that would come on every-other night.  I would literally lay on the couch writhing in pain for 5 hours straight until the pain subsided.  We had gone to the ER a couple times and the healthcare we had at the time wasn't the most efficient so they had me bounced around (which took days!) for a while until finally we got a call after an ultrasound of my abdomen from a doctor that said, "Get to the ER right NOW!  You are having surgery tonight!"  My gallbladder was taken out and I was so thankful for the relief from that pain!

But that surgery only seemed to be the beginning of my problems!  Within a week I was back in the ER because of doubling-over pain and vomiting.  They saw that my liver numbers were elevated so they assumed I must have a retained gallstone in my bile ducts.  They did a procedure to clear them out.  The searing pain was gone, but now a dull, but very prominent pain remained in my upper abdomen and fatigue and GI problems set in.  Within a few days I was jaundiced and literally felt like I was dying. I could barely eat a few bites without running to the toilet to dry heave.  My liver numbers were even MORE elevated now. I was so fatigued I could only just lay on the bed in misery. 

I was sent to a gastroenterologist who spent the next few months trying to figure out what was wrong with me.  He thought it could be auto-immune hepatitis but that test came back negative.  He tried various medications on me but to no avail.  My liver seemed to improve, but VERY slowly.  I even had a liver biopsy!  Every test run on me came back totally normal!  It was so frustrating to be so ill and be told that I was "fine".

The most frustrating part of it was that I had a new baby and I just wasn't well enough to care for her.  My plans to breastfeed her went out the window as I sat in the hospital (during one of the many hospitalizations at that time) and tried to pump.  I barely got an ounce out and I cried to the nurse who sent for a lactation consultant from two floors up (I wasn't in the maternity ward, after all).  The consultant said she was baffled why I couldn't produce more milk.  She asked me all sorts of questions but the one that I answered yes to was, "Are you stressed".  I burst into tears and said, "I'm not trying to be but it is frustrating to be here and no one knows how to help me get well!"

We had to come to the decision that our baby would be formula-fed. (And as a side-note, she has turned out great so far and is one of the smartest little 8 year olds you'll find) :)  My mom was gracious to fly out of state to come help us for a few weeks on and off so that we could get by since I just wasn't well enough to take care of a growing newborn.

By the end of 2007, my gastroenterologist had me on the highest narcotic he could prescribe and it wasn't touching my upper abdomen pain.  I went off of it and he told me there was nothing else he could do for me.  That was it. No referral, just a diagnosis over the phone that said, "I think this will pass soon for you."  It had been 4 months and I hadn't seen a change and he thought my problems would pass soon?!  My husband and I decided to see a liver specialist out of state at the UCLA Med. Center.  The only info we had to go on was that my liver was still out of whack so that's what we pursued.

The appointment there was productive.  They said nothing was wrong with my liver and there was a real possibility that I had had a retained stone a few months ago and it had wreaked havoc with my liver.....but my liver was HEALING...slowly but surely.  But, they asked,  had I considered the possibility that I might have Celiac disease (based on my GI symptoms)?  It would be weeks before I could get an appointment to get tested by my doctors and I was miserable.  So I went off of gluten by myself.  Within a week I noticed improvements and by about a month being off of gluten I had more energy!  By month two I had no GI symptoms and I was able to care for my little one without getting tired out!

I still had upper abdominal pain but in my mind, I could work through pain, but there's no way you can work through fatigue.  Fatigue sucks you down and lays you flat.  I finally saw a doctor who told me that it was enough for him that my symptoms went away for him to clinically diagnose me with Celiac disease (without any tests).  He told me to really rest and take care of myself because I had had a very eventful half-year.  So I did.  And I improved so so much.

2008 - I was still doing great with only the complaint of upper abdominal pain when the time came for my husband to deploy to Iraq for 15 months.   Our daughter was 9 months.  We made the decision to have me move close to family during this time and boy am I thankful we did.  Just about as soon as he left, my health started to decline slowly but surely.  By mid-2008 I was so fatigued I could barely function around the house and I started getting "floating" joint pain. Sometimes it was in my ankles, sometimes it was in my knees, sometimes my elbows and wrists.  I also had severe muscle pains that would come and go all over my body.  I had a horrible time getting a good night's sleep.  I would wake up feeling like I had been hit by a truck.  But being a "single" mom (while my husband was deployed), I was forced to work though it as best as I could.  On my most fatigued days my family would come help me or I'd move into their house for a few days until I felt another small surge of energy.

I was tested for all sorts of things - Lupus, Rheumatoid Arthritis, etc, and nothing was coming back positive.  Every test, including blood-work was "normal".  So to doctors, I was not "sick".  But I WAS very ill.  I was eventually diagnosed with Fibromyalgia by a renowned doctor in Beverly Hills.  He had even co-written a book about Fibromyalgia!  I felt like I could trust him because of those credentials.

I even went through a sort of rehab program for people with Fibro that this doctor had devised to help them "manage" their lives.  I was told, "When you finish this rehab program you will have ONE good day a week!" and they said it with honest enthusiasm.  I just kept thinking "ONE?  That's it?"  I burst into tears.

Something bothered me about the Fibro diagnosis....I think the fact that there's no cure. I was not satisfied with that.  I was young and had a toddler and I should NOT be so incapacitated by something without the hope of getting better.  It was around this time that my sister-in-law was diagnosed with Lyme.  We had both had similar health problems and she had also been diagnosed with Fibromyalgia (by the SAME doctor I had been diagnosed by) before going the Lyme route because her symptoms intensified.

I decided to get tested. I found the lab that would provide the proper test and took the paper-work to my doctor at the time.  He said "It can't be Lyme".  My mom helped me at the appointment because I was so ill.  She told the doctor what we knew about Lyme.  My doctor said he knew a guy who knew about Lyme so he gave him a call right then.  He came back in the room and said, "You're right.  It's a possibility.  We can do the test."  He wrote the order for the test, I went to the lab, got my blood drawn and tried to have it sent to the proper lab.  But the lab I was at told me THEY did the proper test.  My naivety about Lyme let me go with it.  This was right around Christmas.

2009 - In the beginning of January, my sister got married. I was her maid of honor.  I remember PRAYING I wouldn't faint during the ceremony because I was so weak.  My doctor happened to be friends with the groom's family.  So he was there.  He came up to me after the reception and said, "We got the results of your test in and it was negative."  I think my whole body sank a little lower.  He could tell.  He said that just by watching me at the wedding and reception, that I was very ill and he knew it was frustrating and that he wasn't giving up on me.  And the only thing he could come up with since we had checked out everything else was that something must be wrong with my gut based on a few vitamin levels that had changed within the last months and he would refer me to a specialist.

I went home that day so dejected.  I was so frustrated.  I for some reason googled, "natural antibiotic" and came up with Olive Leaf Extract.  I bought some that day and started taking it.  A LOT of it.  Three times a day.  Within a few days I was "herxing" so so bad.  I had no idea what that meant as a diagnosis except that it probably meant something.

Instead of going to a GI specialist, I decided to find a LLMD (Lyme-Literate-Medical-Doctor) in my area and requested to be tested for Lyme again.  Surprisingly, he took my insurance for office visits.  He was willing to do the proper test and thought that might be the answer to my health problems.  He also thought if it wasn't that, then it may be Candida.  That was another thing I was scared just didn't seem right to treat for something that couldn't be properly tested for.  But I was so ill that I decided to try his treatment. It involved herbal "antibiotics" like Olive Leaf Extract.  

The Lyme test results were not available right away due to some normal clerical stuff.  It took a while....enough time that I was able to be on this herbal "antibiotic" for enough time that I noticed changes.  I started feeling a bit better.

My husband came home from Iraq on his 18 day R and R.   We were still waiting on Lyme results and didn't know much about the disease, and I was only doing somewhat better since being on the herbals.  We decided to try for another baby.  Part of us thought maybe since my health problems seemed to "start" with my last pregnancy, that maybe another pregnancy would reverse "it".  Well, lo and behold, I got pregnant while he was home!  We found out a few days before he left for the rest of his duty in Iraq.  And we also found out that my Lyme test was NEGATIVE.  We thought we were in the clear.  And maybe this "candida" thing was what was causing all of my problems. 

Funny enough, though, being pregnant and being on those herbals do not mix.  So I had stopped taking them before we started "trying" to conceive.  A week after we found out I was pregnant, I woke up one day and had loads of energy!  And no joint pain or muscle pain.  All I had was morning sickness.  But compared to what I had been feeling this was a piece of cake.  I was so excited. It seemed the pregnancy HAD "reversed" whatever was wrong with me.

I was enjoying feeling "normal" again and enjoying time with my 1 1/2 year old.  But then one day, about 8 weeks into the pregnancy, I woke up and felt AWFUL.  All my joint pain was back and I was so fatigued.  Fatigue can be a symptom in your first trimester so that didn't worry me much.  But what did bother me was that I felt so much like I had before I was pregnant. I had a very nagging feeling something wasn't right with the baby.  But I had no symptoms of a miscarriage so all went on as normal until my 10 week appointment.

The doctor couldn't find a heartbeat.  He did an ultrasound to confirm.  The baby had died and by his judgement it was about at the 8 week mark and my body just didn't do it's "job" of recognizing that there wasn't life growing in my womb anymore so it didn't act like a normal miscarriage.

My husband wouldn't be home for another few months so I decided to really dedicate myself to taking these natural "antibiotics" like the doctor suggested in hopes that my body would be ready to try for another baby when my husband came home.

Those months were hard and I had lots of help with my little girl and by the time my husband came home, I was a LOT stronger.  Still not 100%  -- like if I did "too much" I'd have a few days of down time to recover, but wasn't suffering from brain fog or very much pain.

My husband came home!  What a great reunion. It's hard to be away from your spouse for 15 months!  Especially when chronically ill and with a toddler.  We had a fun summer and I got pregnant right away!   We traveled a lot that summer as a family and as soon as the summer ended, my morning sickness started.  It was TERRIBLE.  I was literally bed-ridden from it.  I also blacked out a few times in those first few months and that was unexplained by my OB-GYN.

After about 18 weeks of morning sickness, things evened out.  I didn't have many of my "old" symptoms so I thought hopefully that whatever I was ailing from before was taken care of.  I had some fatigue at the end of the pregnancy but who doesn't in their third trimester?

2010 - Beautiful baby girl #2 was born in March via C-section.  She was lovely and healthy and we were just so happy as a little family of four now.  

But something funny was happening health-wise.  As soon as I got home from delivering the baby, I started getting strange gastrointestinal symptoms.  It felt like my first pregnancy all over again only this time, I was ALREADY gluten-free so what could be causing my symptoms now?

I decided to see a GI.  He ran every test imaginable.  Even a genetic Celiac test that would tell whether I had the genetic predisposition to have it. Every test came back normal. I did NOT have Celiac - so my reaction to gluten (which I did have) could not be explained. Neither could my pain in my upper abdomen and frequent bowel issues. I had an Endoscopy, Colonoscopy, Ultrasound of the abdomen, MRI of the abdomen -- all normal!  The only abnormal thing was an elevated liver enzyme that couldn't be explained.  He told me I had I.B.S and to come back in 6 months.  So much for that.

As a month or so passed I started to get more severely fatigued and the joint pains started to set in again.  I saw my General Practitioner (now we were in a different state so it was a new doctor) and told her about my wrist pain in one arm in particular. I also gave her a full history.  She agreed to test for Rheumatoid Arthritis again but told me "You probably sprained it."  I don't remember spraining it I said.  She gave me a brace and told me to take OTC meds.  I told her I DID take OTC meds and it didn't help the pain and that the pain "floated" to different joints.  She told me to take 2 of an OTC med and it would help. I interrupted her and told her I was already taking 3 at a time.  She stared and then said, "This kind of thing will go away after a week or so."

Shot down.  Been tested for everything.  Doctor was not taking me seriously.   After discussing and praying with my husband about it, we began to feel a bit terrified that I may fit the bill for a Lyme patient.  For a while we just brushed it under the rug trying to resist admitting it could be a real possibility for me.  We knew that untreated, Lyme could lead to some nasty neurological stuff and I was already starting to show some symptoms -- some twitches, etc since Olivia was born. 

We decided to pursue Lyme disease once again.  I had pulled out my copy of my Lyme test and what do you know?  It was sort of borderline.  After talking to my husband's brother and sister-in-law who were both suffering with Lyme, they encouraged us to be seen by a LLMD again.  We decided if we were going to do this we were going to find one of the BEST ones in the world to get an answer from once and for all.  We landed with Dr. J in Washington DC.  To be seen quicker, we agreed to see his P.A.

She was great!  Going into the appointment we were both just trying to keep an open mind and be in charge of our health. We were armed with questions and were eager to learn about the science of the disease.

It was a 3 hour appointment. They sure took their time with us and were very thorough. It's serious business being diagnosed. They want to be sure.  The examination was thorough and my entire medical history including blood work-ups and tests and biopsies, etc were looked through. A complete physical examination was done as well. I'm telling you, they were THOROUGH.

I don't know if it was a relief or a terrifying moment when they diagnosed me with Lyme. I wanted to tear up at how afraid I was of it and yet also sigh a sigh of relief that NOW we know and NOW we can treat and there's HOPE to feel better.

The P.A said Lyme likes to hide in the central nervous system, so basically all the joint pain I was having was just the nervous system's response and not REAL joint pain. That's why it floats around to different joints. And also my headaches and general pain were nerve responses. Also my bowel issues that had never tested positive for anything wrong (no Celiac, normal colonoscopy, endoscopy, etc) can be attributed to a nerve response. So was my on and off nausea. It also would affect my reflexes and be responsible for the twitching.  Also that upper abdominal pain (that came after the birth of my first daughter and also returned after the birth of my second daughter) could be explained by that too! So that's why all the pain meds I had tried had done NOTHING for the joint/abdominal pain because it was a nerve problem, not a problem that had to do with inflammation (what most OTC meds are for). Yucky, mean, Lyme Disease!

So we came up with a game plan.  First they would try to treat my symptoms and get my nerve system under control again so that my immune system could gather itself up again and better be able to fight the bacteria when they would put me on antibiotics. I went on a combination of meds to help my nervous system in the beginning.

Stress and anxiety can lower your immune system response so they said that for me it explains why I seemed to get way worse during times of stress -- after the gallbladder attacks when Georgie was born 3 years ago, then when Matt went to Iraq, and now after giving birth again to Livie.

They also said it's not uncommon for all symptoms to disappear during pregnancy like mine did. Something to do with the way hormones work with Lyme flare-ups.

SO......not even 2 weeks after being diagnosed with Lyme, we were thrown a curve ball.
Yes, I was diagnosed with Lyme disease and there can be some pretty scary neuro symptoms to go along with it. But we thought I was not anywhere close to experiencing those things yet. In fact, we were enjoying some vacation time out of state with family and actually thought I had a breakthrough! I woke up one morning WITHOUT PAIN and feeling somewhat 'normal'. This had not happened in a while. I was cautious but Matt told me not to be and to just be so happy and thankful that the nerve meds must be doing their job. Further confirmation it WAS Lyme we were dealing with here. Made me excited to hopefully start the antibiotic treatment soon so that we could kill the Lyme and I could go back to having a normal life.

And then out of nowhere - SMACK - we got a terrifying surprise. I'll spare you all the details, but as we stopped for lunch on our last day of vacation with our family before beginning the long multi-state drive back home, I collapsed in the IN-N-Out parking lot and had a seizure. A very scary moment in my life.

We were thankful we had the diagnosis of Lyme and had seen our dear sweet sister-in-law and brother go through this. Because otherwise, we would have been baffled and probably looking for the nearest emergency room only to be told that they could find nothing wrong :) Instead, we knew this was definitely a symptom of Lyme and that while we were quite scared, we knew we could contact our doctor for further instructions.

We did and she was very helpful. Thankfully in my possession were anti-seizure meds (used for something else) that we were able to use whenever a seizure arose.

All that to say, for the next week or so I was having at least one seizure a day. And also another lovely symptom arose - I walked like a drunken man. If I worked REALLY hard I could walk somewhat normal but around the house I found myself with jello legs, knocking haphazardly into walls and tables and occasionally falling over all together. Not to mention the random neck/head and arm twitches that would happen most of the day.

This was TERRIFYING for us as you can imagine. Especially with me being the caregiver for our two little ones. My husband had an understanding boss who let him help out a bit and we had a wonderful church family who came to our rescue in time of need. I had help with the girls almost every day and meals brought to our house!

It took a few weeks, but finally with some adjustments of the medications I was on, the seizures stopped.  I was now left with just tremors on one side of my body if I overexerted myself and severe fatigue.  But the meds seemed to help a lot with my joint/muscle pain. I was finally ready to start antibiotic treatment.

And that is where the real struggle began.  Struggling through what comes with fighting Lyme with antibiotics AND caring for 2 little ones! I gave up making dinner and my husband took over.  I ended up in a wheelchair if we ever went out.  Lots of family flew in to take shifts in helping me around the house.  I was basically incapacitated most of the time.  The extent of my walking was basically limited to our house since I was able to sit after a few steps. But some days/moments, even walking in the house required help because I was so fatigued and weak.

                           There is Hope!!!

Before I got ill
After I got ill

The great news is, that with hard work through treatment (pulsed antibiotic therapy) and God's help, I am got to be doing a lot better than in the beginning! I had a breakthrough in April of 2013 where before I was knocked over with pain and fatigue, now I was full of energy and taking on more responsibilities. No more tremors or partial seizures; no more wheelchair for me!  Then unfortunately I hit some complications mid-2013.  Lyme is a mountain with peaks and valleys and a valley I was in.  In 2014, I was put on IV antibiotics as well as oral antibiotics (still pulsed therapy) and the IV antibiotics were a great jump start needed to kick Lyme&Co back more than a few paces. I gained some ground. In 2016 I was still fighting the disease with (less) oral antibiotics and dealing with (fewer) seizures (praise God!). I'm made progress, but things can be slow when Lyme has taken ground in your neurological system. I've had to learn to be patient and slow and listen to my body and not push it.  I've had to trust in God's timing more than ever and trust that even though I look back at my "old self" and all that I used to be able to do and love (hike, ski, be active, etc), God is saying - "wait - It's still not time." In the middle of 2016, I noticed a huge increase in energy and had had no seizures since December 2016, and my health took a turn for the ever so better.  
It's 2017 now, and I have ZERO symptoms of Lyme. I am healthy and fully functional and feel better than I did before I got very ill.  So I fight on. Lyme is a marathon, not a sprint and it took everything I had to get better.

2014 after some setbacks

2016 - a little hike (with help!!)

2016 (last half) - been camping and hiking a lot!

2017 - Symptom free and feeling 100%

Symptoms I had before I was diagnosed with Lyme Disease and co-infections:
*frequent moderate headaches
*frequent migraines
*traveling joint pain
*uncontrollable itching (severe itchy skin)
*unexplained hives (would come and go)
*kidney stones
*back pain
*unexplained abdominal pain
*elevated liver enzymes
*chronic diarrhea
*chronic constipation
*gluten intolerance
*unexplained weight loss
*black outs
* dizziness
*light-headed upon standing
*very slight tremor on one side of body
*extreme fatigue
*unexplained muscle pain
You don't have to remember being bit by a tick to have Lyme.  You don't have to have the classic bulls-eye rash to have Lyme (most people don't remember being bit or getting a rash).  Ticks are TINY and can be hard to spot.  And lastly - ticks can be in just about every state in the U.S and in most countries in the world. I spent time rolling around the grass in Maryland for a week or so with my cousins where they picked ticks off of each other all the time and I'm nearly sure I could have been bit again there without even knowing it! And hiking around in Pennsylvania in high school. I was bit by something in Japan in my college years that sent me into horrible flu-like symptoms and I'll never know if that gave me any of the co-infections I'm dealing with now.