I’m Ending the Silence

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It’s fair to say I’ve been avoiding my blog and really anything that involves sharing my personal thoughts and happenings with my life and my treatment for a while. But after events occurred last week I feel the need to update everyone and take advantage of this platform to process the rollercoaster that is my treatment.Twist of Lyme Bracelets

July 26th I had an appointment in the Bay Area that left me pretty discouraged. My parents accompanied Justin and I to the appointment and when we were talking with the doctor about how I was progressing it was clear I had done a good job up to this point but my fight was not close to being over. Looking at my dad’s face in that appointment broke my heart because I really felt like I let him down even though I’d done EVERYTHING in my power to follow all of my doctors orders (including sticking with my strict diet, medications 4+ times each day, exercise, positive environment, doing things I enjoy like art projects and helping others, detoxing and keeping up with frequent enemas and castor oil packs, etc.) I walked away from the appointment feeling like even after 1000 days I still had so much more treatment to endure and my fight was not over. This appointment was absolutely the opposite of what I expected and hoped to hear.  (Oh, I should clarify that my dad was not disappointed in me, he is disappointed with my Lyme and this process but it is not me. It’s hard for him to watch me endure this battle and it’s hard for me to separate the disappointment not being about me but rather the disease.)

This emotional news made me and my family question my treatment and after a lot of conversations we started considering getting a second opinion, which was encouraged by my Lyme Literate doctor. We started looking into Lyme treatment centers and researching new doctors. We talked about traveling to India to follow in the footsteps of an acquaintance of mine who did treatment there that was extremely successful. I also talked with my family about a place in Florida and another in Arizona. I was overwhelmed and desperate to find someone with fresh eyes who could help me.

Then I started having gallbladder problems and was in extreme pain. One of my medications can cause gallstones so I was immediately pulled off of that medication and all my energy was focused on relieving stress on my liver and gallbladder. Eventually I passed 5+ large gallstones.

August 23rd I had a phone appointment with the same doctor as the previous month and we decided it was a good time to see where I was at with my treatment. It was clear to me and my family that I was following this intense treatment but we weren’t quite sure what bugs we were actually fighting. Originally we knew I had Babesia, Bartonella, Lyme and parasites in my body. So for over 2.5 years I flooded my body with medications to kill all these bugs along with medication to build up my body as the war waged on. So when I spoke with my doctor we decided it was the perfect time to pull back on all of the “killer” medications, after all, I already had a jump-start in this trial because I’d been off of one killer medication for 2 weeks due to the gallbladder issue! We would wait and see how long I could go without a return of symptoms. If symptoms returned early it was an indicator that Bartonella and/or Babesia were still an issue and if symptoms returned in 4-6 weeks then Lyme is still active in my body.

Then September 3rd Justin and I started moving out of our tiny apartment and into our new rental house! It was so exciting for both of us because we had gone full circle. Living in an adorable house in Reno (2009-2010) –> diagnosis and moved back in with my parents so they could help take care of me (Dec 2010-Feb 2012) —-> moved back to Reno into the same apartment complex as my in-laws (2012-2013) —-> moved two blocks away from our old house into a house with a yard and an art studio! We are finally back to where we started before my diagnosis and are hopeful to put Lyme behind us soon.

Then due to the stress of moving or just bad timing I got a urinary tract infection (I have a history of multiple UTIs each year). It was a bump in the road and knocked me down a few notches but I did my best to move into the house and start getting settled…my family stepped in huge and helped us with this!

White Chicks With Lyme SignsDespite the UTI and gallbladder issues I was still doing quite well with my medication break and the weeks continued to count on and I was getting more and more excited that my treatment was almost over. I made it through the five week mark and after another phone appointment the medication break was extended two more weeks.

And then it happened. Monday evening I started feeling like my UTI had come back or possibly was never fully gone and I was miserable. I did an at home urinalysis and confirmed my suspicions with positive test results that the UTI was still present. Then the next day I was feeling even worse and knew my doctor needed an actual urinalysis before they would put me back on any medications….but the urgent care tested and I had completely negative results. My at home test was wrong. I had no infection in my bladder. I was relieved but also scared at what this meant.
I had many symptoms that night:
-Feeling feverish but no real fever
-Massive sweats and chills
-Brain fog
-Irritable bladder
-Skin crawling
-Achy
-Flank pain
-Not feeling like myself
-Headache/migraine
With the negative urinalysis and the knowledge that Lyme can present as a billion different symptoms I decided to call the on-call doctor and let them know what I learned. I was still hopeful that I was wrong, just like I was wrong about my suspected second UTI, and when the doctor decided I needed to get back on my antibiotics and treatment was back on.

I felt like I failed. I was so excited to be so many weeks without returning symptoms and I felt like the gallbladder/liver and UTI bumps in the road were really my body kicking in and start working again. I saw both events as a positive in getting closer to my body doing its thing to work again! So knowing the Lyme flared up and is still active in my body really bummed me out.

After I had a good cry that night my husband and I talked. He reminded me this is exactly what we were looking for (although I wasn’t looking for symptoms to return….I thought I was free and clear!) and now we know which bug (Lyme) we are fighting. He reminded me I need to be strong and that I will get through this. Going back on medicine now doesn’t mean I will be on it forever. It just means I back on it for now to knock the Lyme bugs down because they are out and energetic – putting them in the perfect place for a slaughter fest. He reminded me how important my mental game is in this fight and I need to stay positive. I am so grateful for this man in my life. He is so smart and sees things differently which really helps me keep my focus in this battle.

So here I am tonight. It’s been a few days back into treatment. Back on my “killer” meds and waiting for my Igenex test to arrive in the mail so I can do fresh labs to help tell the story going on inside of me.

I’ve been silent with all this going on because I so badly wanted to be done with everything Lyme. But I have amazing support from my friends and family and also the Lyme community. I know God has a purpose in this  illness and my fight and perseverance I just don’t understand it at this point. So I am learning patience and embracing my life. My silence has ended and I’m back so leave me a comment and let me know what you’d like to learn about, questions you have, etc.   🙂