Search This Blog

December 22, 2012

Celebrating the Holidays with/as a Sicky!

Hi everyone,
I wanted to write just a short post to wish you all a Merry Christmas.  I celebrate Christmas and am excited for all the family that is in town to celebrate this year, but I know not all of my readers celebrate Christmas so I titled today's post "Celebrating the Holidays with/as a Sicky!

I think it is very very important to be gentle with yourself.  This time of year brings a ton of expectations and the reality is you probably don't have enough spoons to be a part of every single event. That is okay.  Your goal (and I hope those who love and care about you support you in this) is to allow your body to heal. Stressing out to get things done, over-exhurting yourself to be part of every event is probably too much. You need to prioritize and be realistic with what you are able to actually do.  You are doing this so you can get better and make it to (hopefully) many future holidays.  It doesn't  do anyone any good if you kill yourself this year trying to live up to everyones expectations.  We are sick! And our bodies are FRAGILE! So take it easy this year and focus on what is really important.

So take a deep breath.  You have wonderful intentions. Anyone who is supportive of your Lyme journey, or any journey back to health will understand this. And anyone who doesn't, shouldn't be in your life! You need to be in an environment that supports healing.  Anything that adds stress, pain, sadness, and anger will not allow your body to heal.  I do support you experiencing all of these emotions as part of your journey back to health, but not living in them for days. My goal this year is to enjoy time with my loved ones and laugh....a lot. There is nothing that makes me feel better than reminiscing and laughing with my friends a family.

I am sorry we are in this place. I am sorry you are sick. I am sorry you have to prioritize Christmas day with your kids.  It sucks. It's not fair. BUT, you are not alone!  There are many people who are sick this year and aren't able to do every tradition. Focus on telling your loved ones how much you care about them and how special they are to you.  Share in the things that are not physical presents but that money can't buy.

Be gentle with yourself. Allow your body to heal. Laugh as much as you can. And enjoy the small things this holiday season.

Merry Christmas Everyone. You are in my prayers. I love you all.


PS I hope this starts off your quest for laughter and fun times. This is one of my favorites:

December 14, 2012

Great Explanation of the Lyme Disease Controversies!

On this blog, I have mentioned many many times about the Lyme controversy. My last post was about how insurance didn't cover anyone diagnosed with Lyme Disease and painted you the picture of how insurance failed me, even though I was doing everything I was supposed to with regards to seeking medical treatments. By now, I hope you realize how many people are told they are crazy and Lyme doesn't exists.

Nearly every time I've touched on this topic, I've also referred you to watch the documentary, Under Our Skin. This is because Under Our Skin is available for free on and also available with instant live streaming from Netflix. My hope is that you will watch the documentary and be aware of the disease, which has become an epidemic.

I must confess, I have had a horribly hard time watching Under Our Skin because it hits too close to home for me. I relate so well to each person they featured in the documentary and it breaks my heart how many other people are suffering the same as me and some even worse.  I have watched the majority of it over time and I think they did an amazing job with the documentary.

Brittany Goff, a former Lymie, was featured on "Monsters Inside Me" for her Lyme and Babesia/Babesiosis infections.

Brittany has done a lot of research about the Lyme controversy and she really breaks down the controversy in this youtube video. She calls the video "Why the government won't allow treatment for Chronic Lyme disease."  Brittany does an amazing job explaining the entire controversy and why it came to be in the first place.

Also, here is part of Brittany's story featured on Monsters Inside Me:

Thank you Brittany for all your research and raising awareness! I am honored to feature you on my blog today :)

December 4, 2012

Everything I haven't told you....including the truths about my Lyme and insurance

Insurance is supposed to be a safety net, right? If you have cancer, get hurt, learn there is something wrong with your brain or your heart or your kids, then yes. But if you have Lyme, the reality is the net has a huge hole in it.

Let me take you back. Over two years ago I was happily married and working full-time to do the job I planned to have after graduating (marketing and graphic design). My work saw so much potential in me they promoted me and gave me the job without my BA. I was stoked. I was also taking full-time classes (some online and some night classes) so I could obtain the degree that I'd already been promoted for. I was living in an adorable house with our fur babies (dogs) and I had the man of my dreams going to school to be a firefighter paramedic, which was totally sexy to me. I was living the American dream and I was so happy.

From a distance that sounds wonderful, right? Well, sort of. All along while I was working and going to school and being a wife, I had a war going on inside of my body. I had no idea what was happening inside of me. I made accommodations so I could live with the strange symptoms that no doctors had answers for.

My back, neck and sides were all affected.
It all started when I had bizarre sensations to touch, mostly on my back. I found out that by layering a few shirts and taking a couple of doctor prescribed medications, I could live with my extremely sensitive back. But I avoided hugging people and was keenly aware of every door handle or woman's purse that I could accidentally be nudged into.  This would instantly result in me breaking into tears and my whole body in shock from the pain in my back. Doing marketing and being invited to many social events where I was "on" ready to shake hands and introduce the company I represented, and bending over backward to impress a potential client, I faced this purse, door-handle and hugging situation often. My pain wasn't ideal, but I could cope. I'd been living with it for a long time and I knew the sensation was getting worse, but I'd been proactive going to every specialist I could get into. No one had any answers so I just went on with my life hoping I'd find an answer before it took over my body.  The sensitive area started out under my shoulder blades in 9th grade and over the course of eight years had spread up my neck, down my lower back and was now creeping forward to the front of my torso. 

While the pain in my back was slowly taking over the majority of my body, I had another lovely strange thing happen to me.  Before we were married, Justin and I were heading out to his aunt and uncles house for dinner. It was about a twenty-minute drive and I was looking forward to seeing everyone. It was getting dark outside and I was suddenly very sensitive to the headlights from everyone’s cars. I remember getting very sick in the car and even threw up next to a bunch of mailboxes in their neighborhood. I had no clue what had come over me and my eyes weren't really the same after that. We ended up going to the ER where I was told I had a headache. Awesome. I couldn't identify colors for them, but after an MRI and blood work, I was sent home with my "headache" and a referral to a Neuro-Ophthalmologist.  I'd been to other neurologists in the area but only for my back issue and I was optimistic that someone would be able to help me. I made a point to only talk to this doctor about what was going on with my eyes because I knew he specialized in this area and at this time I had no reason to think my back pain and eye issue were at all related.

This doctor was amazing and two appointments later he diagnosed my eyes with _____. It was simple; my optic nerve had disconnected slightly which caused each of my eyes unable to track together.  No wonder I couldn't tell if cars were driving in the lane next to me or merging at me!  It was so simple once he figured it out to demonstrate it to my mom and fiancĂ©, who came with me to the appointment. The doctor would have me follow his finger with my eyes. As I followed his finger from right to left and left to right my right eye would stall and sort of bounce up and down and then continue following the finger along with my other eye.  I remember my mom and Justin standing close to me staring at my eyes as I followed his finger they said in unison, "Oohhh!" They could easily see what I had been trying desperately to describe but couldn't. My eyes weren't working together.  Sweet. I had another prescription to dumb down the nerves in my eyes and I had an actual diagnosis. Unfortunately, there was no reason or cause for this to happen and there wasn't much I could do about it. I had some optic nerve damage but nothing that should interfere with my life too much once I got the medication in my system.  Between the time of the ER visit and getting the medicine to help my eyes, I had stopped driving. It was impossible to drive with my eyes not tracking together. This was an extra complication in my life and required a bit of assistance from my roommates, fiancĂ©, coworkers and teachers. But it was short lived and I returned to my life. I continued to plan my wedding, go to school, go to work, and manage my symptoms.

The medications I'd been given by a few doctors seemed to help the pain in my back and my eyes, but it was calming down my nerves, which calmed down my brain, making me very tired.  I would sleep forever if my schedule would permit, but I had places to go, people to see and bills to pay.  I remember my roommates making comments about how much I slept, but I didn't know what else to do. So I missed out on a lot of late nights of laughter and other fun things that come when living with all girls.

In 2008, Justin and I got married and my symptoms remained the same.  I was still on medication and required a lot of sleep, but it had become my normal so we just lived with my quirky health issues.  I had continued going to the doctor and the eventual referral to a specialist, but it always left me at a dead end where I felt a little more crazy. No doctor could tell me what was going on with my body and neither could I.

My life continued and was practically perfect, but like I mentioned earlier, I had a war going on inside of me. I had a bacteria slowly reproducing and invading my neurological system while drilling into every muscle, tissue and organ of my being.  I had no clue. I had only the gut feeling that something was going on deep inside of me. If I couldn't figure it out, eventually, I would be bed bound, confined to my house, unable to wear clothing due to my pain spreading and taking over me. I spent hours online trying to find some answers but my searching just left me more confused. 

Around the end of summer in 2010 I went to another neurologist on referral from my doctor, hoping this one would recognize my symptoms and give me a real diagnosis.  This lovely doctor was so kind to crush all my dreams and tell me I would never be able to have children because of all the medications I was on. I was crushed. I arranged a private time to talk to each of my parents and let them know I wouldn't be able to give them grandchildren.  I had been married for two years and always spoke of my dream to be a mom, so I'm pretty sure they were expecting me to tell them I was pregnant, but not this.  My parents had always known of my pain and strange symptoms, but didn't really realize the extremeness of it all until this conversation.  It was at this point that each of my parents busted out their superhero costumes and told me we couldn't give up based on what this one doctor told me. We wouldn't stop until we had a true answer to what was going on with my body. We would travel to UC Davis or the Mayo Clinic to have more specialists look at me. Nothing would stop my mom, dad, step-mom and step-dad from finding some true answers!  It was amazing. I had pretty much given up on this fight. After all, I'd been seeing doctors for years with no leads or ideas at what was happening to me. I was defeated, but my parents (all of them) had a fresh fire under them and they were fueled to find an answer.  Within days they had gotten me referrals to a few major medical teaching hospitals and our plan was to go to the soonest appointments I could get.  It was weeks and months before I would be able to be seen by anyone at these places, but my mom and stepmom both had these "amazing doctors who diagnosed someone with a strange condition" so I agreed to go to one appointment for each of them. I was doing it to appease them, not because I actually thought I would get a diagnosis.  After all, I knew practically every doctor in Northern Nevada and no one had helped me, so I had little hope in them. 

I was able to get into one of the doctors very quickly. I had assembled a binder of all my medical records and a timeline of my symptoms (all for UC Davis and the Mayo Clinic) but I decided to bring it, just in case.  Dr. A walked in and I started telling her I'd been to all these doctors and no one could diagnose me, as I handed her my timeline and waited for her to write me off like every other doctor.  She sat down and waited for me to stop talking. She looked at me and said, "Elizabeth, I want to do some blood work, but I think you have Lyme disease."

I looked up and locked eyes with her, choking back tears, "What's that?"  She started to educate me about Lyme disease and how it is from a tick but not many people know if they get bitten or when.  She asked me if I'd ever had a bulls-eye rash, and I denied it. She kept telling me it was normal that not everyone gets one, and if people do they don't always see it or recognize, especially it if it is on the head covered in hair. She told me that my story was not uncommon from people with Lyme disease. So many people display bizarre symptoms that get worse over a long period of time. So many people go for a long time without a diagnosis. With Lyme disease you can't look for a specific symptom, but you look for neurological type symptoms.  My pain, my sensitivity to touch, and my optic nerve disconnecting were neurological based!  I couldn't believe my ears! She actually had an answer to all my weirdness! I had tears streaming from my face. I was so relieved to have a name and a reason behind everything I'd been experiencing!  She had enough medical information to prescribe me an antibiotic and start my Lyme treatment that day: November 9, 2010. Finally, an answer! I was not making it up! It was not all in my head! What a relief!

Dr. A sent me home with a lab work kit that would be sent to a specialty lab to confirm my diagnosis.  My symptoms started years ago, which technically qualified me to be diagnosed as Chronic Lyme Disease. Regular lab work through LabCorp or Quest would only give me a positive diagnosis if I had recently been infected (like within the last couple weeks).  My first month of treatment was rough.  I tried to maintain my life but within a few days I was clearly very sick, I know now was from killing all the bugs who were hard at work taking over my body.  I took a medical leave from work and could barely lift my head off my pillow. I was living in my charming house with my husband and my superhero parents were an hour away. I think they were feeling pretty good because within a couple months they had already scored me my diagnosis and started me on my treatment.  None of us realized what this diagnosis meant for me.  I lost over ten pounds in a month. I could barely eat. I called my mom from my bed and told her I didn't have anything I could eat. She thought I meant I couldn't afford to go grocery shopping so she offered to pay for my groceries and I should just run to the store.  I clarified for her that I literally couldn't think of anything to eat and I was really sick.  "Oh, sweetie."  I imagine her saying this and wanting to run and snuggle me until I felt better, but she was busy at work and couldn't get to me for hours. That is the last memory I have before I remember waking up in my dad's house while Justin was on a medical internship in Peru.  He didn't plan on leaving me right when I got my diagnosis; this trip had been planned and saved for, for a long time. I was in good hands with my parents, so he felt okay leaving me to treat sick children in Peru. I really couldn't say no and have him stay! I felt like I was experiencing a bump in the road and I'd be better by the time he got back to the country a couple weeks later. I was so wrong.

He returned just before Christmas and it was clear to him and my parents that I wasn't moving back to Reno. I required more care than he could give me, and it made much more sense to have all of my parents (and some loving and concerned family and friends) checking on me and staying with me nearly 24/7. Justin had work in Reno and we were in a contract to rent our house until May so he stayed at our house in Reno and he would drive down to see me as often as he could. I was sleeping about 20 hours each day and had to be helped multiple times each day to eat and take my medicine.  It wasn't unusual for him to drive down to see me only to spend the time studying and catching up on any changes with me from my parents, while I just slept. 

Eventually, we contacted our kind and understanding landlord who let us out of our lease early and Justin moved to Minden with me.  We had quite a tailspin from being on our own, happily married, to getting my diagnosis and starting treatment.  Nearly overnight Justin's medical training and experience became essential in guiding and directing my care. He was my husband but also the person directing my care from the home front. His expertise really came in handy when my doctors determined I was a candidate to do my infusions by IV instead of taking them orally.  So we were living with my parents and life had changed in a big way.  I couldn't even shower without supervision and a shower chair! I was so weak!  I have very few memories from that time.  All I know is it was extremely hard for my parents to watch me go through my treatment but they didn't want me to be anywhere, but living in one of their houses taking good care of me.

I know Dr. A briefly mentioned it, but I only began to understand what a long and expensive journey this would be.  The initial blood test was around $900 and not covered by insurance.  I also started seeing a Lyme specialist who didn't accept insurance.  I've learned the dirty truth that insurance dictates the care a doctor is allowed to give. By my doctor not taking insurance it allows him to treat me based on his schooling, medical research and years of expertise to care for patients. If my doctor accepted insurance he would be limited to treat chronically ill Lyme patients like me, with 2-4 weeks of antibiotics, and a pat on the back for all the symptoms that were still hanging around and not given the time to be treated. In my case, I've had eight years of symptoms slowly taking over my body as the Lyme bacteria (Borrelia burgdorferi) slowly reproduced. Because of its spiral shape, it would drill into every fiber of my muscles, tissues, and organs. Eight years of infestation can't be treated in two to four weeks!   The antibiotics don't work like the Hiroshima bomb taking out everything in sight (thank God, or I'd be dead too). 

Instead, the antibiotics work by targeting the bacteria to mess with their evil plan to destroy my body.  The antibiotic is the good guy in my treatment, but part of it trying to destroy and kill the bacteria has some negative side effects for the body housing this war (aka me).  But, the bacteria are smart and can adapt to a certain antibiotic becoming resistant to its power.  So my doctor has to be ahead of the bacteria and switch up my medications often before they become resistant. 

The only CDC approved treatment for all patients diagnosed with Lyme disease, thus the only treatment insurance will pay for, is very similar to the Revolutionary War strategy of the Red Coats.  They used the same attack time after time and they got shot down time after time. Stand in a line; get shot down. Send new people to stand in the same line to get shot down again. There is no change in strategy, and no adjusting for attacking the other side, just the same line up no matter what. This war strategy didn't work well for the Red Coats and it hasn't worked well for anyone who struggled to get their Lyme diagnosis. This strategy just doesn't work, but this is what the CDC has approved for ALL Lyme treatments (immediate diagnosis AND chronic diagnosis). 

The Americans continuously changed their plan and strategy to better attack to win the war. Just like my Lyme specialist who switches out antibiotics to best kill off the Lyme bacteria. It takes a long time to eradicate the Lyme from a body, especially after its been growing and reproducing freely for 8+ years.  

Then, to make things even more complicated, it's time to tell you about co-infections that travel with the Lyme bacteria.  When the tick initially burrows into the skin, it backwashes bacteria into the body while filling up their bellies with blood.  What the tick leaves behind often is not only the Lyme bacteria, but also co-infections, which are other bacteria, viruses and parasites, that complicate treatment.  For me, I was given the Lyme bacteria, as well as the co-infections Babesia (similar to Malaria) and Bartonella (often called Cat Scratch Disease).

It is unknown to me if I also contracted parasites from the tick, or when my system was compromised from all these buggers.  All I know is my body became a perfect home to many unwelcome visitors that I learned about YEARS later when I got my Lyme diagnosis and started testing for the co-infections. I didn't know I had parasites in me until they started evacuating my body! That was a big surprise to see in my toilet! I had urinated a parasite that was still alive!  I watched the nasty surprise swim down my toilet! The bugger was about three inches long and dark in color. It reminded me of a garden worm.  It was that day I began saying the phrase "better out than in!"

Since that time I have physically seen three other species come out of me.  They all look very different and each species was a different color, shape and size than the last one I found. Some I've been able to capture and send in for testing and others I haven't been able to collect.  If this is interesting to you search "parasites" on my blog and you can read all about my adventures with parasites.

Overall, the picture I want you to see is I truly am a victim to Lyme (and its accompanying friends).  I was contributing to society, working full-time, and going to school full-time; living the American dream.  I was proactive about seeking healthcare and went to every referral I could to find an answer for my strange symptoms. Before I started having symptoms at age 14, I lived in Minden, NV. Not an area or a state that is recognized by the CDC to have any reports of Lyme disease. I'd never been to the East coast. I was a fairly healthy child. I played soccer in the fall, but, overall, I didn't spend a ton of time outside. My family wasn't into camping much and I had never seen a tick before.  I honestly consider myself the poster-child of who-was-not-at-any-risk for getting Lyme disease.  But, alas, I got it anyway.  

I started this posting talking about insurance and I want to bring you back to that point. I didn't feel like I could make my point without letting you know everything I've been through.  I've always thought of insurance as a safety net. But this safety net has failed me because of my diagnosis.  I followed every step I was supposed to. If I had cancer instead of Lyme, I would be treated at Center for Hope or some other treatment center where insurance would cover my treatment. When my dad had heart surgery, insurance covered nearly everything for his procedure at Stanford University.  But because I have Lyme there is no real coverage by insurance. 
I do need to disclose to you that I was very fortunate the first fourteen months of my treatment. My insurance did cover my prescriptions, my infusions, my home care nurse, all seven of my picc-lines and my port for IV access.  But after fourteen months they had a change in their policies and decided not to cover my treatment any more.  To this day they only pay for my prescriptions at the regular pharmacy, and not all of them are covered.  I was already paying out of pocket for all my doctors appointments, holistic treatments, homeopathic drops, supplements, additional specialty blood work and stool samples. I complement my Western medicine treatment with Eastern medicine to build up my body while the antibiotics were hard at work killing the bacteria and other critters inside me.  So for the last ten months it has been by the support of my family to pay for everything (I'm so grateful to have the family I do).  I hate to even guess at how much this entire treatment has cost us because the thought of it breaks my heart. But so far my stab in the dark guess is somewhere between $60k-$90k and this is my running total. I am still not done with my treatment. In fact, I have probably another year to go.  From what I understand a typical chronic Lyme treatment with no financial restrictions is about three years. So I am roughly 2/3 of the way through!

If you have cancer or get hurt or learn you have something wrong with your brain or your heart or your kids, then yes, insurance exists to protect you and your loved ones, but if you have Lyme, the reality is the net has a huge hole in it. I didn't do anything to choose this diagnosis. I followed all of my doctors’ instructions and sought after the best care to help me get better, just like anyone would do with any life-threatening disease.  I had a job provided me insurance and I never had a lapse in coverage. I didn't have a pre-existing condition or any other thing that could be said to deny me support from my insurance company.  Because I don't have the support of my safety net anymore, my treatment goes on a week-to-week basis. My family has all offered financial support, but the resources are not endless. I only hope I finish my treatment before the resources run dry.  It's a scary place to be and it doesn't make sense to me that I have to go into big debt or ask my family to help me pay for my treatment when I did everything I was supposed to.  Insurance exists to protect people like me from situations like this. I really don't understand why the "safety net" doesn't apply for me just because my testing revealed Lyme disease and not cancer.

December 1, 2012

So Much Has Happened....Including Yesterday

I've noticed that I'm not the only blogger who took a hiatus from blogging for no apparent reason, but I'd like to say I'm back and I have a lot to share!

Since I last posted I started a new antibiotic that my body could not process. I was doing all my regular detox regiment (coffee enemas each night, castor oil packs most nights, lymphatic massages, colonics, oil to detox my skin, footbaths etc....) It wasn't enough and man was I in a bad place! I noticed it was the very worst when I drove to a doctors appointment 1 mile from my house and I couldn't find the office. I go to this office multiple times each week for detox. I know where it is and how to get there, no problem, but with my super toxic system my brain couldn't function and it was bad.  My naturopath was able to squeeze in an appointment for me and she made all these changes to my protocol. I ditched that IV antibiotic, hunkered down on my new protocol and in less than a week I was finally back to being me!

That was a few weeks ago. Since then I've started on two new antibiotics that work together to fight my Lyme. They have been much easier on my system because I seem to be handling these a lot better, but I can tell my brain isn't totally working like normal or working like overly toxic, I'm just a little off with the new medicine so I'm adjusting.  It makes things that require multiple pieces or multiple steps so much harder to organize in my head. Like instead of grabbing all of something I will need from a drawer I will grab everything I think I need and then a few minutes later realize I forgot something and have to go back to grab it. So it's just making me slower, but it's totally manageable and I'm keeping my body strong and hoping for the best. I am much more weary now of becoming too toxic so I've been paying close attention to everything.  I'm pretty convinced with this new symptom I'm gonna find my keys in the fridge.

Let's see, what else....oh, I started a thirty days of thankfulness for the month of November and made it about half way before completely missing my regular updates. I had great intentions, but I just spaced it.   For all of you who were able to remember each day I am super impressed with you!

Oh, Thanksgiving happened and I almost slept through it. I was feeling crappy on that day and my plan was to stay in bed until Thanksgiving dinner was ready. My sister was planning on swinging by and picking me up, which was so kind of her, except it wasn't that easy.  I was sleeping and I was OUT! She came to my apartment door and after constant banging and 31 missed calls I finally woke up, threw on clothes and enjoyed a lovely organic turkey dinner. My step-dad's family catered to my dietary needs and it was so thoughtful. They were all making sure I knew which platters were safe for me to eat off of.  I felt so blessed that they cared and went out of their way to have dairy-free options and everything was organic. It was amazing.

Justin and I had our first real experience with identity theft. It's been awful learning how evil people are sending large cashier checks to be deposited only to wipe out your bank account. No, we didn't actually do this, but our name has been tied up in this scam : /   We've reported everything to the bank and to the police so now we just keep waiting to see what else happens.  So far we've received two returned envelopes (return to sender which is our address, but we didn't actually send the package) and they have large cashier checks in far we've seen upwards of 11k. I hope the police is able to use the information we gave to catch the people actually involved in the scam.

While I was away from my blog my favorite day of the year came and I was uber lame this year. Usually I will push myself to do Black Friday early morning for all the door busters and such. It is so much fun to find all the bargains. But this year, so many places opened at midnight and I needed my sleep so I slept through all the door busters and promised myself I would do better next year and have twice as much fun. Don't get me wrong, I didn't skip the day all together, I just took it easy this year. Just me and Molly and a couple stores. Then back to bed I went. But, I do have to say I mastered Cyber Monday for the first time ever! And I am 97% done with all my Christmas shopping, but I still have quite a few to make/complete.

I also had a really big doctor's appointment in the Bay Area!  My doctor was thrilled with my progress and he even gave me a timeline.  He told me 14 months, which is about 12.5 or 13 months from today.  This is a big deal because every time we see him we ask him how much longer he thinks I have and he always beats around the bush saying, it's hard to know because I'm not progressing like he'd like me to be and there's so many factors involved blah blah blah.  But this appointment he volunteered the timeline but, I was so excited to hear a timeline I forgot to get clarification on what the number meant. Is that when I will be done with antibiotics? Will I be completely done with my treatment? Can I start trying to get pregnant then? I really don't know. So it's super exciting to hear a timeline, but in all honesty, I have no idea what it means so it is still a big mystery. Oh well. I'm glad he noticed my progress and was FINALLY happy with my bodies progression!

I am so happy to announce that my husband is an official paramedic firefighter with all of his certifications and he is looking for a job!  He has a lot of great prospects for jobs but nothing is finalized yet. But, I'm so happy for him to be fully certified and be looking for a job. I am so proud of him I can't even describe it.

In other good news, there are a handful of special women in my life who are pregnant! I'm very excited for each one of them, but I'd be lying if I told you I wasn't jealous. My mom put it into great perspective for me. She said, "Sweetie, I'm not sure why it isn't you time, but it just isn't". When my mom told me that I was reminded that just because it isn't my time now doesn't mean it won't be my time ever.  My desire for a child now does not outweigh the regret and blame I would feel from my baby being sick with Lyme from conception so I will do everything I can to prevent getting pregnant and hope that when the time is right, God blesses us with a child either from my body or through adoption or who knows.  What I do know is it's not our time right now.  So with that I can wait and enjoy all the joys of pregnancy with each of my friends. And when the babies are born it means I have a handful of new babies to love!  My sister-in-law is due January 2 with a little boy and I am so stoked to meet him! Heather will be the first to give birthday in this handful of women I love who are expecting. The rest will come between March and May I believe.  We recently had a beautiful dinosaur themed baby shower for Heather, Sam and their baby boy.  Now if only he would hurry up and come so I could hold him!!!  My mom also shared with me some wonderful the time I can have kids my friends will all be experienced moms who will love to have quality baby time which should allow me to get an occasional full night of sleep and other wonderful things that only experienced moms truly understand.

And I will fast-forward to today, I started out my morning with a wonderful Community Group/Bible study. We have some new people in our group since I was last there which is really fun. Like I said earlier, I kinda took a nose dive for a few weeks which means I also missed out on going to my group because I was so sick.  After CG I went with a few of the girls to a local eatery and had a bite to eat while we laughed and laughed while getting to know each other more.

Then, I got to see two of my favorite girls in the whole world! Harmony and Jess were both bridesmaids in my wedding (the only bridesmaids I had who weren't related to me or Justin) and they drove up to Reno to see me today! It was so much fun. Jess has two kids that are hilarious and I rarely get to see them because they live in Kentucky now. And I usually see Harmony over skype, but it was so nice to actually see her! So we hung out for a few hours and shared even more laughs.  One of my favorite things about true genuine friends is our ability to pick up conversation if it's been one day or years since we last saw each other. It is one of the best feelings in the world, especially when I have the energy to do everything I want!
Harmony, thanks for taking this picture...sorry you are not in it. 

Unfortunately, right after the kids and girls left I went from feeling awesome to awful in about 2 seconds flat.  I walked from the parking garage to my apartment and the next thing I knew I was staring at the ceiling while I laid on the floor of my apartment. I'm not sure if I passed out or what happened but I woke up completely freaked out. Diego stood over me for a while and then he laid down and nudged my hand with his nose. All I could do was tell him to go get dad (who was upstairs in my in-laws apartment) and if Diego could open the doors, and choose the right button on the elevator I'm certain he could make it to their apartment with no problems.  Thankfully, Justin sensed that he needed to come downstairs and he walked in a looked at my face and knew something was not right. I was more freaked out than anything, but I was also dehydrated and had a slight temp so my sexy paramedic husband got me all set up with doing an IV bag for hydration, some meds to bring my temperature down and just reassured me that I was okay now which helped me calm down.

It's moments like that where I get super frustrated with my body. I used to be so good about knowing my limits (and how many spoons I had for the day - The Spoon Theory) But today I had no idea I had pushed myself too hard I was feeling awesome one second and the next second I'm on the floor not sure how I got there.  So obviously, I know now that I did too much today. I'm super grateful for all the laughter I had today and all the great company.  I am even more thankful for my husband being off today and able to rescue me and bring my body back to a more normal place. I'm just gonna have to take it easy and hope for the best. I am strongly considering that alert button for old people though.

Like I said, so much has happened since I last blogged. I'm sure I'm forgetting a lot of things but you now know where I'm at today.  I want to thank each of you who participated in helping me choose my Lyme Disease Awareness slogans. I'm working on the designs and hope to roll them out with the new year :) I'll be sure to share the designs with you!

November 18, 2012

Help Wanted - Please Vote On Your Favorite Slogans

Voting for my awareness campaign for this year has closed. Thank you to everyone who participated. I plan to roll out the new car decals with the new year! If you participated
or want a decal please fill out the following information :)

***Voting is now closed! I can't wait to share with you the few winning slogans and the designs I've made. Hoping to roll them out with the new year. Please pray I have the energy to do it. Thank you to everyone who voted! I feel like I can really share our awareness message to the public. :)

I would love to send one to each person who contributed and to anyone who will put this message on your car. Please remember my supplies and budget are limited. However, if you are able to donate to this cause please use my donate button to the left and help me spread the word about Lyme Disease Awareness even more!

Voting is now open to help me narrow down which slogans I will use to create car decals!  I will be using my skills as a graphic designer to create something I hope everyone will love. Each year I try to do something to help raise awareness about Lyme disease because before I was diagnosed I had never heard of it before!  I could have researched Lyme and helped diagnosed myself years earlier! That's why awareness is so important to me. I had nearly 30 suggestions for my decal campaign this year.  I need your help to narrow them down!  Please select the slogans that you like the best and would be a great awareness tool on the back of a car.

You may select multiple slogans when you vote but you are only allowed to vote one time. Please spread the word and get as many people to vote as possible. Poll will close in one week: November 25, 2012.

Here are examples of car decals for other causes. Click on each picture to learn more:

To check polling results at any time: click here.

Please select your favorite Lyme Awareness Slogans. I will take the top few and create them as decals available for everyone to spread the word :) free polls 

Thank you everyone,

November 12, 2012

Creative Help Wanted!

Submission for my awareness campaign for this year has closed. Thank you to everyone who participated. I plan to roll out the new stickers with the new year! 

Each year I dedicate a little money for Lyme awareness.  I did silicone bracelets in the past which was a great success and everyone wanted them.  This year I really want to do a car decal to go on the back of a car in either white or lime green (or possibly both).  I've been trying to think of what it should say.  Do you have any ideas?  Once I design them and make them I'd be happy to mail the finished product to whoever contributes to helping me with the design (if you private message me your address)!

Here are some I've seen before, but I'd rather be more original:
1. Lyme Sucks
2. You Don't Get It 'Til You Get It - Lyme Disease Awareness
3. Lyme Lives Here
4. Someone I love has Lyme Disease (this is the same as I printed on my silicone bracelets)
5. ?????

CREATIVE HELP WANTED!  My whole purpose is to spread awareness. I know in my case if I had ever just heard or seen the words 'lyme disease' I would have looked it up and been able to diagnose myself!  I just want to help get the word out there in a creative and educating way. Thank you!

October 17, 2012

Technology Saved the Day

Yesterday afternoon (Tuesday) we left Reno and headed toward San Francisco to see my Lyme specialist (early appointment on Wednesday).  I tend to get super anxious before any doctor appointments and this appointment turns out to be no exception. I'm awake at 6:30am unable to go back to sleep because my nerves have got the best of me.  I'm not really sure why, I always walk out with a plan whether I get good news or bad news, but I think the scars run really deep from all the years of hoping a doctor would know what was going on with my body and I would leave feeling broken and sad because not any of the top medical professionals had a clue.  I think I will take a LONG time to build my trust back up with any doctors even though I am completely happy with my specialist I'm conditioned to be very nervous and anxious - like how Pavlov's dog was to the tuning fork. He salivated anyway.

The drive was good. We took my new little car to be more efficient with gas. I got super carsick along the route and was contemplating if we should just pull over and find a place to stay and do the drive in the morning.  As a last resort I created a miracle carsickness remedy of medications and was able to fall asleep in the car and actually get wonderful sleep. Only problem is, I'm not sure what was in my concoction so I doubt I'll be able to recreate it! Oops! I know dramamine and zofran were in there, plus a dumb tv show I listened to with headphones. We didn't book a reservation in advance for our hotel because we had no idea how far I'd be able to last in the car. The last trip we had to pull over and find a place to sleep because I couldn't last any longer. It was awful feeling that awful so this time we prepared for that just incase it happens again.

© 2010
We ended up making it all the way and then stressing because every hotel we called was at full occupancy, but we didn't find that out til later because we were in the city and starving for some good food.  We decided to seek out a good Mexican restaurant so I pulled up one on Yelp and as we were getting out of the car I had a light bulb moment.  We were so close to House of Nanking and I've been begging to go there every trip we've made to San Francisco in the last two years.  This was finally a realistic request!! So we got back in the car and drove the 1.2 miles to get there! In retrospect we probably should have just walked from where we originally parked, but oh well. We ordered the food to go so we could start on our search for a place to sleep.

Have I ever mentioned how amazing technology is? Well it's stinkin' awesome because we probably would have slept in the car if it wasn't for our iPhones or our Garmin GPS! We had the perfect situation to try out,, and and for the true reviews of these hotels. I thought I would share with you my experience with was our least favorite and we quickly moved on to trying their competitors.  Their mobile site was hard to navigate and not helpful at all. The other three had a hard time when we put in the date (at 10pm) that we wanted a room for tonight (Tuesday) so we were not helped much with that when booking.  We could however, see which places had rooms available, although not 100% accurate because I called 4 places that could not accommodate us.

I think what took us so long to find a room was I really really wanted a room with a big bathtub and jets for my achy body. I was pretty determined to find one. We spent a lot of time trying to find a room that was available with this unique feature. by at 10:45pm I finally came to my senses and we called a place, reserved our room over the phone and walked in the lobby about 20 minutes later. In the end we settled for a perfect room we found on Expedia but had to call to make the reservation because it was so late the online booking wouldn't work.  So Expedia is our grand prize winner and we scored a non-smoking room, very clean, with the duvet cover sheets (not that nasty floral print kind that so many hotels have...what I refer to as the sex blanket. Ew. Because they rarely get washed.) and a big fridge for all my medication. There was not a good bathtub in this room, but the beds were amazing and I slept pretty well until my nerves woke me up! Plus, we are only 15-20 minutes away from my doctors office.  Winner winner chicken dinner! Two hours and counting until my appointment! Can't wait to hear what they have to say! Hoping and praying for positive news and a good game plan. I'll keep you posted!!

I was not asked to review any of the websites listed above, this is just my experience. I received no compensation for this review.

October 14, 2012

Peeling back the next layer :)

I can't believe it's been so long since my last post.  Time has literally flown by / I've slept away a lot of it.  The last round of Vermox was successful, but not as much as I would hope.  I saw my naturopath earlier this week and I learned a lot about what is going on with my body.  This is the first time that I have had radical changes so I am pretty excited!  I have come to think of my healing process as an onion and every couple of months I get to peel back another layer to find out what's now being exposed.

The one sad point for me is Babesia is back in the picture.  I thought I had conquered this stupid bug, but she's back, but only a little.  I still have Lyme but my biggest culprit is Bartonella!

I see my Lyme specialist early this week to get his take on how I am progressing.

I've started to have a new symptoms. One I can barely describe. PAIN. Everywhere-most specifically my pelvis, spine, shoulders, ugh. I've known that Lyme can cause a person a lot of pain and I though I had experienced Lyme pain.  I was completely wrong, the pain I've had today is excruciating. This morning I woke up in tears in with so much pain. Literally didn't even wake up first, but the pain woke me up. It is awful. I have some pain medicine, but the medicine doesn't touch it.

I am so glad I see my specialist so soon because no doctor can really help with pain issues until they see you because there are so many drug addicts and drug seekers in the world. So I'm icing my body and trying to be gentle until I can get to the appointment.

On a positive note I've started seeing a therapist to help me emotionally cope with all my body is going through.  There is an emotional component and a physical component to the healing process and I am ready for the healing process to being emotionally!

I'm sure I'll have more news after my specialist appointment. I'm anxious and excited to see what he has to say.

October 1, 2012

The FINAL Round of Parasite Slaughtering (I hope)

Okay, I just did it. I faced the moment I'd been hoping for and dreading all at the same time....I am taking my (hopefully) last round of Vermox (the amazing medication that gobbles up the body of the parasites living inside of my body leaving only protein for my body to absorb or excrete).  This moment has been something I've looked forward to for so long because it COULD mean I don't have any more parasites.  Yesterday was the full moon, which if you've been reading my posts, you know the full moon has a huge impact on my body because the parasites regenerate on the full moon cycle....last night would be their huge orgy party and tonight I believe I have the maximum number of parasites remaining in my body.

So I took the dreaded medicine just now at 11:50pm on Sunday, September 30th.  The regiment is to take the pill twice each day for thee days in a row.  It's a chewable pill so it goes into my system pretty quickly and I usually have stomach cramping within 20 minutes after taking it.  It the past, I've been knocked on my butt during these three I guess I wait and see.

Honestly, I have an upset stomach, but I had one before taking the pill so it's hard to differentiate the pains in my gut.  I'm hoping this round will be rather uneventful (meaning the medicine had nothing to destroy so it just passes through my system like anything else), but I guess we will have to wait and see.

At the beginning of my Lyme battle I had the Lyme bacteria, babesia, bartonella, and worms/other parasites of various sizes.  I have experienced three species that I could visibly detect - no microscope needed.

If I do have a positive last round then I can celebrate because I will have conquered my parasites!  I have already rid my body of babesia so the only buggers left are Lyme and bartonella.  I don't want to put up streamers yet, but I would like to point out we may be close to halftime in this fight and I am really excited because a lot of it will be downhill coasting!  I also have no idea if my body in healing time is actually at halftime or if healing time isn't measured by months and years....kinda like dog years does time pass much more quickly the second half?

There are little glimpses of the old me coming out.  My family notices them mostly, and it is super cool cause I don't recognize those little wins very often. Sometimes, I am scared to admit when I feel glimpses of the real me because I'm scared to jinx it. Western medicine complemented by Eastern medicine has led me to this point! It's working :)

I am hoping for three days of smooth sailing! Please keep me in your prayers! Oh, and if you run into me in the next few days (just in case there's any parasites still in there) make sure to yell at my parasites and tell them they are not wanted....seems to work better when others say it! lol!

September 27, 2012

Battle Scars and Motivation

Don't worry, that is betadine...and I'm
 not naked! Lol!
It's been a while since I had all my picclines removed, but I still have scars on the underside of my arms.  I feel like each of my scars are battle wound that show how strong I am.  To date, I have had seven picclines and one power port. I did 13 months with seven picclines, then my powerport since February. This disease has left me with a lot of physical scars and emotional scars, but above all it has shown me how strong I am.  The scars on the insides of my arms are healing really well and are really only noticeable if you are looking for them. I had a hard time taking a good picture of the piccline scars...which is a good problem to have!  The first picture you see, is a picture of my port when it was de-accessed and cleaned earlier today by my nurse (the stuff on my chest is a betadine, not blood...I know you were thinking it, Brandon! lol). Then the second picture of me is when I showered and put on make-up for the first time since my sisters wedding (6 weeks or so).  I assure you I've showered, but haven't done anything about dressing nice or putting on make-up since then. I enjoyed a nice outing to the world famous JT Basque restaurant in Gardnerville, NV.  I ate really well and successfully wore myself out in just a couple of hours.

Me heading to the JT.
Then the next day I attended a baby shower for baby Walker. Here is me holding him soaking in all the baby loves I can.  I look at this picture and it gives me motivation to get better and lose my port (right by Walker's head) so I can have my own bundle(s) of joy! I'm not sure if that is a year away or three years, but hopefully my time will come soon! I love babies and can't wait to have my own!

Lately I've been comparing myself to a lot of my friends who are completed with college, buying houses, working in their career, having babies.....and I am learning a very different lesson and my timeline is very different then my friends and family. I hope one day I will be able to look back on this time and understand it better.

Here is me holding three week old Walker.

In other news, I've been thinking a lot more about getting a tattoo.  I love dark tattoos on people with darker skin and I love white tattoos on people with white skin.  I love this shoulder piece because it is so subtle and can easily be covered up for work.  All growing up my mom has been a "doodler", which doesn't really explain how cool her art style is.  I will incorporate my power-port scar to be incorporated into this tattoo. I think I will also add in scripture and other little things into the feminine tattoo. I'm hoping my mom with help me design it in the future. I've been thinking about this for a long time and know I will get it as one of my celebrations when I am done with treatment.  I have so many things to look forward to!

September 25, 2012

I Am Grateful Today

Today has been a hard day.  My port was de-accessed, cleaned and re-accessed just like it is every Tuesday, however, I am experiencing more pain with each needle dressing change. I have had a lot of pain, nausea, some blacking out, just overall blah. But, I am right on track with feeling like crap as the full moon comes closer.   In a previous post, I mentioned how crazy the full moon can cause all sorts of bizarre symptoms. For the second day in-a-row I haven't really made it out of bed all day. Today has been extra rough because my pain and nausea are up, but that does not stop me for being grateful for the life I have and the support from friends and family.

Sometime in our early marriage, Justin and I had a pastor speak truth into our relationship.  He taught us we needed to be grateful for the life we have and give thanks for everything even when we can't find the positive in the situation.  This is so key to understand, particularly with a sick spouse or a difficult life circumstance it is important to think positive because none of us deserve the life we have.  Jesus died on a cross and took on all the pain and sin we deserve and he washed us clean...meaning there is eternal life for those who believe in Christ Jesus.  For me, especially on hard days, I try to remember this verse in Ephesians 5:20: "And give thanks for everything to God the Father in the name of our Lord Jesus Christ"

Here is my dad in Miss Deon the Neon.
This verse specifically says to give thanks for EVERYTHING. All the good and all the bad.  It seems so strange, but it is so relieving to think this pain and sickness will not last forever.  I will have a day when this is going to be better.  Either because I will die and go to heaven or because I will beat this disease and enjoy life to the fullest!

Today, I have one huge thing to be thankful for! A new car that will keep me safe and will be a great little car to re-learn how to drive again in.  I have not had my license taken away from me, instead I just listened to my body and knew that if there was a pedestrian, my brain signals would not make it to my foot in-order-to put on the breaks before hitting the poor person in the crosswalk.

I have driven occasional short distances over the past 1.5 years so it is exciting I am even thinking about driving again. Thank you so much to my Aunt Robin and Uncle Dave. Also, thank you Dave Rikalo and Justin for driving the car down from Seattle for me.  Now when I feel safe to drive I will have a small car to do so in!

September 19, 2012

So You Just Found Out You Have Lyme Disease?

First of all, I want to share in you the now have an answer to all of your bizarre symptoms! When doctors told you it was all in your head or you were making it up, they were wrong! Mysterious symptoms that no one can really address actually have a root cause!  The answer is Lyme and if you have been searching for weeks/months/years it is so refreshing to have a name and reason for everything going on and everything you've been through.  You are not crazy! You have Lyme disease!

Now, I want to tell you this is not going to be an easy ride.  It is extremely scary and the medical community often doesn't recognize Lyme disease. I am so sorry that you have become a fellow Lymie.   Please know that you are not alone! There are hundreds to thousands of people online and all over the country who help each other through this treatment. You need to know that this disease is extremely controversial and expensive.  But, again, you are not alone and you will get through this battle.

Here is Information I Wish Someone Told Me When I Was First Diagnosed:

1. This site will provide you with a lot of educational resources that are trusted by the Lyme community.  The Center for Disease Control (CDC) and Infectious Disease Society of America (IDSA) have not supported the Lyme community well so be careful where you get your information from.  As you or your loved ones begin to read and educate yourselves on Lyme you will find some big gaps in treatment protocols.

2. Find a Lyme Literate Doctor (LLMD) through the Lyme Disease Association Doctor Referral Program. The Lyme community is very protective over these doctors because many of them have faced time in court/jail fighting for providing necessary patient care.  Most of these doctors do not accept insurance so they can go by what is best for you (the patient) and not by what insurance says is the proper treatment (max of 1 month of oral antibiotics....this is not enough if you were infected over two weeks ago). The doctors you will be linked to may require you to jump through some hoops to make sure you are legitimately looking for a LLMD. You will be grateful for this process down the road when your doctor is being protected from others.

3. If you haven't already, make sure you get a positive lab test from Igenex. A doctor will need to order this for you and your LLMD will have no problem with this.  Often they will order it for you so you have the results before seeing them in their office for the first time. The test is very expensive, but it is SO important to get the clinical diagnosis to get any help from your insurance. If finances are a huge struggle for you there is an organization that is hoping to help people nationwide get diagnosed.  The patient must show true financial hardship based on household income and insurance status.  You can learn more about The Lyme Test Access Program (Lyme-TAP).  I believe Lyme-TAP reimburses you after you pay for it (if I remember correctly the test is around $900 out of pocket). It is expensive but EXTREMELY crucial for proper treatment. Labs like LabCorp and Quest offer Lyme disease tests, but those are only reliable if you have been bitten recently (about two weeks). It is important to know the bulls eye rash that is so stereotypical of Lyme disease only occurs in 40%? of cases, I can't remember the exact statistic, but just know it is not a reliable indicator, especially because you could be bitten on your head or genital area where you would never see it. One Lymie reported seeing the statistic only about 15% of cases will see BOTH the tick and the rash (something to consider).

4. In the medical community there is no one way to treat Lyme.  So many factors go into treatment including when you got the bite (if you know, many don't), how far back your symptoms went undiagnosed, what else is in your body like co-infections and/or parasites that are compromising your body even more, your personal philosophies, etc.  Insurance does not cover the majority of most Lyme treatments so you must choose a doctor whom you can trust and a treatment plan you can agree with. Some Lymies choose to go a natural route using herbs and tinctures for treatment, others use Western medicine of antibiotics and some Lymies choose a combination. There is a program, Bridges to Access, that can help cover medications if you qualify.

5. In order to recover from Lyme you will have to do a lot of detoxing to rid yourself of the toxicity. Look up any or all of these things to become familiar with what is available to you and what your LLMD may recommend for you. If you don't not believe it will work for you, then it won't work for you so I strongly recommend having an open mind when told to do a certain treatment like: Far Infrared Sauna, Hyperbaric Chambers, Rife Machine, Epsom salt bath, Moore mud bath, Foot Detox Bath, Dry Brushing, Lymphatic Massages, various cleanses, Colonics, Coffee Enemas, Valkion, Earthing, etc.

6. You may also need to eliminate foods that make detoxing more difficult. Generally, it is a rule to eat plenty of organic fruits, organic vegetables and organic clean meat. Dairy is a problem for some lymies as well as gluten.  No two people are the same so it is best to talk to your LLMD.

7. Lyme treatments can take months to years. Some people are able to work through treatment while others are unable to do so. If you are needing help paying for your medication you should check out NeedyMeds. This site is a great resource of all the medicine assistance programs by state and nation wide that are available.

8. There is differing opinions on whether Lyme disease can be passed sexually and also from mommy to baby in utero.  It is my personal opinion that this can happen as I know Lymies who are living with these instances right now, but the medical community hasn't done enough research to make it official.  My advice, use protection and do everything you can to not get pregnant. Better safe than sorry.

9. Another thing you should know is Lyme has extremely high suicide rates of people who are diagnosed.  I think this is mostly from having unrealistic expectations about the treatment. Don't be a statistic! You can beat this disease! I hope and pray your friends and family rally around you to support you in the marathon of a treatment (not a race).  You will always have the support of the Lyme community who you can find on Facebook like Lyme Disease 101, Tired of Lyme, Lyme Teens.

10. I hope this list helps you as you begin your journey. I encourage you to read other postings in my blog and other Lyme blogs, but don't consume yourself in Lyme. Do not let Lyme define you. You are a wonderful person with so much more to you than being sick.

But You Look So Good
What is Lyme Disease?
- Getting the Word Out
- Battle Scars
- Infrared Saunas Are Great for Lyme
- My Compilation of Lyme Friendly Products
- Another Lymies "Lyme Kit"
- Heavy on my Heart
- Secret About Sickies
- Double-Edged Sword
- Update and Understanding My Port
- All in One Place - Lyme in the Media (Books, TV, Movies, Documentaries)

If you have anything else to add or information you would like answered please post a comment and I will make changes. 

September 16, 2012

All roads point to Lyme

This is me, 18 years old, just before my symptoms snowballed
My Lyme story is not unique. It is actually very similar to other people diagnosed with Lyme. In the documentary Under Our Skin it is mentioned that a majority of people with Parkinson's, Alzheimer's, MS, Fibromyalgia, Lou Gerugs disease actually came up positive when tested for Lyme disease. The more I meet people who have been misdiagnosed and undiagnosed for many years it makes me think that the same bacteria that causes Lyme could be the culprit for many other diseases too. It has made me strongly wonder if the medical community has grouped similarities and called them all various diseases. All of these things have one thing in common: they stem from the nervous system. It's not to say that these diseases do not exist but I do think it is very interesting and something to consider. Here is a list of all the symptoms Lyme can cause. I think you will see why it is often diagnosed as other diseases because the Lyme bacteria can cause so many symptoms. It is important to note that no two Lymies are the same and even people with similar symptoms are never identical....the common thread is where the symptoms come from. If your brain controls it, it can be altered by Lyme. Symptoms caused by Lyme: Brain fog, Insomnia or excessive sleep, Memory loss (short and long term), Joint pain/swelling/stiffness, Poor coordination/ataxia, Difficulty reading, Slow or slurred speech, Unexplained chills and fevers, Rash, Sudden abrupt mood swings, Continual infections, Poor concentration, Decreased ability to spell correctly, Tremors, Disorientation, Burning/stabbing pain (I find this symptom especially in my clients feet), Facial paralysis(Bell’s Palsy), GI distress/abdominal pain, Poor word retrieval/Aphasia, Shortness of breath, Anxiety, Heart palpitations/chest pain, Difficulty swallowing, Sore throat, Swollen glands, Nausea/vomiting, Anorexia, Cough, Vasculitis, Muscle pain or cramps, Loss of muscle tone, Changes in taste or smell, Twitching of muscles (face or other), Obsessive-compulsive symptoms, Panic attacks, Changes in cerebral blood flow/brain waves, Peripheral neuropathy/tingling/numbness, Number reversal, lightheadedness, Headaches/migraines, Light sensitivity, Menstrual irregularities, Change in hearing/buzzing/tinnitus, Trigeminal neuralgia(TMJ), Unexplained hair loss, Dilated cardiomyopathy, Visual disturbance, Loss of temperature control.

For me I had bizarre sensations to touch, especially on my back. The sensation started when I was about 14 right under my shoulder blades and continued to grow and expand across my entire back and even around my sides. The sensation is similar to someone with shingles. Only I never developed a rash and the pain never went away. I would avoid hugging people at all costs and some days I couldn't get dressed because it hurt so bad. When I was 18, I went through a super dark period of depression and I remember crying because my shoe wouldn't stay tied. That was a rough patch for me but I got put on another drug and continued with my life. Probably six months later, my eyes stopped working together. It was so hard to describe what I was seeing and I was scared to death to drive because I couldn't tell which lane I was in and which lane other cars were in. It was such a blessing when one of my doctors figured out my eyes weren't tracking together. It was awful. By the time I was 20 I had seen nearly every neurologist in Northern Nevada and had a referral to UC Davis. I had medicine for the sensitivity in my back to dumb-down the nerves, medicine for my eyes to work together, and depression medicine. None of the neurologists found anything as the cause to my symptoms and would just symptoms manage my pain and sensitivities. I had one doctor tell me I would never be able to have children because of all the medication I was taking. This was the last straw for me but I was more brokenhearted about never having kids than anything. I privately arranged to talk to each of my parents to tell them I would be able to give them grandchildren and cried as I told them the reasoning. For them, the was a huge wake up call. They knew I had pain and strange symptoms but never imagined it would impact my life like it was. They were in alliance to team up and get me the help I needed. We had to find the root cause to all these issues.  

My symptoms seemed to be getting worse as I was more stressed with finding a cure. I also had taken on a huge promotion and was full-time in school. None of these things helped, but I was able to manage my life enough to keep all areas of my life happy. Any moment I was not at work or school I was in bed exhausted and sleeping. I had no social life. I was giving 100% and was running out of steam. My boss was great though, because If I woke up and didn't feel safe to drive into work yet, he was totally supportive and would have me work from home and come in as soon as I could. One morning I clearly remember laying in my bed starring at the ceiling fast-forwarding my life and seeing that I would be stuck in bed in the next few years if my body kept going downhill like it was. I had to find a reason to all this.

A couple of weeks after that realization, my balance started being all messed up. I got out of my car wearing heels, like I had multiple times each day for the last two years, but this time was different, I couldn't quite walk right. All I could think was "You've got to be kidding me....I have to make it inside to my matter what." I used to be a gymnast and really thought I had good balance, until now. And when I lost it, I lost it fast. So I switched to flat shoes for work and just did my best. Later on that week I had another new doctor to see who would hopefully give me some answers. I didn't have much faith in her because I was really waiting for my appointment to get into UC Davis, but I agreed to let my mom and step-mom each take me to a doctor that "was a miracle worker" for someone else we knew. I walked into Dr. A's office with my big binder of test results, doctors notes, symptoms, and timeline. She sat down and looked over my stuff for about a minute. Then she very sweetly and softly looked me in the eyes and said, "Elizabeth, I want to run some tests, but I think you have Lyme disease." I had never heard of it before but she provided me and my mom with a little education and I left the doctors office crying tears of joy. I actually had an answer and it made sense! I started my Lyme treatment that day November 9, 2010 with oral antibiotics. We proceeded with the blood work through Igenex and I tested positive for Lyme. All my bizarre symptoms had a name! I wasn't crazy!  I was angry at my other doctors for not knowing about Lyme, but I learned that it is considered an "East coast disease" so most doctors aren't trained or educated about it, therefore, I couldn't be too upset with them.

The next thirty days were scary. I lost about 10 pounds because the medicine made me extremely sick. I couldn't leave my house. I remember a phone call with my mom where I told her I really needed to go grocery shopping and she assumed it was because I couldn't afford groceries so she offered to pay for them.....I told her it wasn't a financial issue it was that my body was so weak I literally couldn't get out of bed to go to the grocery store. I called in sick many days at work and finally just used FMLA to stop going to work. My co-workers didn't really know what was going on with me but they were all very concerned and everyone donated PTO to me so I would receive a full paycheck even if I wasn't working. It was such a huge blessing. As a family we all decided it was best for me to move back to Minden to live with my parents. We still had our rental house in Reno which Justin stayed in during the week to go to work and school and he would visit me on the weekends. I had multiple people helping me get my medicine in and helping me to eat regularly. As December rolled around I was Christmas shopping from a wheelchair. I was very sick, but finally everyone now understood. It breaks my heart that anyone else would have to go through this disease. Justin has told me many times that I can't just disregard years and years of medical research and not everyone has Lyme disease. I understand that, and I really agree. On the other hand, people all over the world go years without a diagnosis that have any combination of these symptoms and the one commonality between them is often the Lyme spirochete, Borrelia burgdorferi. I don't wish this disease or any similar disease on anyone.