My liver enzymes were up and then down and then up again : / butdown for now!
The definition of elevated liver enzymes means that the cells in the liver may be damaged or inflamed. Inflamed or injured cells leak out higher than normal chemicals, including liver enzymes into the bloodstream, which result in elevated liver enzymes on blood tests.
This means stop all antibiotics! Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.
There are a few reasons why people can have elevated liver enzymes but the reason I am having them is because my medication. I have been pumped up on multiple antibiotics for a year and a half. I have also just had a severe toxic reaction to one of my medications just over a month or so ago. I believe this is why my enzymes went up.
I am in tune with my body so I know when they go up, and when they go down, and I can feel this on a day to day basis. When they are up I can feel a great amount of pain in my neck and back, my eyes look puffy, I don't look healthy, I feel exhausted, sick and tired all over. When they go down, the pain goes away and I'm back to my "new normal" self. My doctor called a few weeks ago and in a nutshell she told me my enzymes are still up, that this is not good, and that I am not done with treatment and I need to get them back down! I said something like, I'm on it, I will get them down!
After having gone on an Orcas Island get away I know exactly what my doctor is talking about. Some symptoms came back. I'm not happy about this and I realize I'm not in remission but this was a huge eye opener for me. The symptoms that returned were minimal joint swelling and achy joints throughout my body that I haven't felt since before treatment. I remember pre-diagnosis thinking that the achy feeling was a normal feeling that everybody gets when they are active. I'd say those were the two big ones and of course my eyes have continued to bother me. I definitely don't feel like I have full blown Lyme. In fact I'm pretty sure my Lyme is under control. It's this damn Bartonella, it won't go away!
Orcas Island get away!
In two weeks I got my liver enzymes down. This is what I did...
Water: Lots and lots of water. Flush those toxins out. I use electrolytes because I hate plain water and it helps to get the pills down. I see a lot of Lymies using Nuun electrolytes. But my current favorite is Ultima in the lemonade flavor. Ultima uses maltodextrin and Nunn uses dextrose. I'm not sure which is the better option for you. If you know, let me know.
LiverCare: All natural things to help filter the liver out and get things moving!
Cactus Water: Low in sugar, has betalain antioxidants in it which have anti-inflammatory properties that help fight cell damage and they protect the liver from toxins.
Activated Charcoal: This does so many things, it's a wonder that all the celebrities are using it. It adsorbs chemicals and toxins. Here is a great link to explain all of it's uses
KappArest: This is a great anti-inflammatory supplement I have been taking through treatment. It also has Alpha-Lipoic Acid in it which my doctor wanted me to start taking as part of my lower the liver enzyme strategy. It is a great antioxidant but it is really good at preventing free radical damage to the neurological system. Which is great for the Lyme brain!
PectaSol-C: My doctor put this in the toxin binder category but this will be one of the pills that sticks around after Lyme treatment. It is clinically proven to benefit cellular health, cardiovascular health, immune health, detoxification, and more.
Methyl Guard & 5-mthf (active B vitamins): I have the MTHFR gene mutation. This can cause multiple health problems! In short, those who have it may have trouble eliminating toxins from the body. Read about conditions and symptoms here. http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/ A lot of people have this and these two vitamins can change your life.
Epsom salt baths of course and listening to my body.
Obviously no workouts if I'm tired and in pain
There is a lot of talk about detoxification and yes, it is a real thing.
Those of us on antibiotics also need to detox from our medicine. In order to detox we must have a functioning liver; Hence the pain and discomfort when the liver is not working.
This post has taken me so long to finish but that is because I have been very, very busy. Hiking, acting, camping, working on my new web page, kicking booties, and so much more. I am getting myself into tons of new adventures this summer! I see my doctor tomorrow and I want these buggers gone!
Made it to the top of Heliotrope Ridge to camp!
New acting reel! All of these things were filmed while living with late stage Lyme disease. Some bring back very painful memories.
It's May and that means it's Lyme disease awareness month. One of the things I want to get across the most this year, is that ticks are in all states and they are in Bellingham, WA. How do I know that they are in the place I reside? For one, there's this thing called migration. Birds and other animals migrate and they bring along things like ticks with them. So this isn't just an East Coast thing anymore.
This makes me feel so gross inside
For two, I GOT BIT BY ONE 6 years ago in BELLINGHAM, WA and it has completely flipped my world upside down!
This is how it went down:
I developed a bulls eye rash on my stomach, just like the photo above. I showed it to my then boyfriend, and the owner of the company I work for. All three of us were clueless, so I threw some ointment on that bitch and watched it dissipate over the course of a week. About a week or so after the rash I developed a flu that knocked me on my ass, so hard! I have never felt anything like it before, nor do I ever want to again. That was the Lyme bacteria evading my central nervous system. From that point on I photographed evidence of my body, mind, and quality of life degrading. This is also where I turned from a "yes" person to a "no" person and spent most my days trying to figure out what was wrong with me.
Just a few to give you an idea : /
Ugh, do I replay that rash in my mind over and over and wish somebody, somewhere taught me about Lyme disease? NO, the past is the past and there is nothing I can do to change it, nor is there a way to rid myself of this disease. All I can do is try to educate others so they do not have to endure what I have endured, and take away the positives from this disease. I'm not sorry if I bug you with my Lyme disease posts. Read them, learn from them and educate others because the people around here, where I live, are clueless as to what lurk in their own backyards. How do I know this? Because this is what I hear:
"I didn't know there are ticks out here"
"My vet says I don't have to worry about ticks on my dog here"
"No, there's not Lyme here?"
"You got it here?!"
"I'm sorry, but I don't know much or anything about Lyme really" From my own doctors:
"No, it can't be Lyme"
"Did you ever think that any of your symptoms are all unrelated?"
"Lyme doesn't happen here"
"You can put Lyme on the back burner, I think it's a false positive"
"Lyme? What, no it's not Lyme"
"Lets just have you try this medication first" (Steroids)
I'll never forget this one, "What's a healthy girl like you doing here?" At my sickest, this is what I heard from a new doctor when I came to plead for a Lyme disease test. He wrote me off before I even opened my mouth! And why? Because how I look externally? To me I looked sick as hell because I had seen a "before Lyme Becky."
I decided to venture out to the place where I got bit. My old neighborhood and my backyard. Every Spring they used to mow the fields down making it really easy to walk through. I guess it's good that they haven't mowed because it would take a crazy person to walk through that mess.
The ironic thing about this photo, is that the building you see off in the distance, is a hospital. It is the exact building that I heard some of the remarks above, from doctors about Lyme disease. It's the first place I went when I figured out I had Lyme and I actually thought that I could finally get help after 4 years of advocating and fighting for answers that nobody could give me. Boy was wrong. Lyme and ticks are sitting in their backyard and they are telling me I'm crazy! Pretty scary.
Above is the view of the condos where I lived. The grass is so overgrown that you cannot even see the small trails I used to walk my girl on.
Here is the start of one of the trails leading into tickville. I was in flipflops and that was as close to the grass as I was getting. I met a lil buddy and of course warned his mom about ticks! This is Dr Pepper, he's been running around that neck of the woods since I lived there.
I have assumed that my sweet, pumpkin, sugar, butt, hunny pants of a dog that I don't have anymore brought the tick inside my home, on her.
Here she is
I used to think that those tiny lil trails were the perfect spot to walk my pumpky, but I know differently now. Guys, don't do that. Don't go walking near or in tall grasses, just don't.
If I got bit by a tick that was infected with Lyme disease and co-infections, in a city that nobody thinks has Lyme or ticks, 6 years ago, it's a fucking epidemic! Anybody can get Lyme anywhere. Be afraid because this disease takes away every single part of your body and your personality. There is no cure, your normal becomes extremely different than the normal you used to have and that's just something you have to deal with. There is treatment and things can improve, for most people but that's if you...
1. Get properly diagnosed Hahahaaaaaaaaaaaaaaaaaaaaaaa Good luck. I had to research and diagnose myself. Doctors will not even say the word Lyme and now it's become a fad, because the celebrities are coming out to raise awareness. The tests are inaccurate. You must go through IGeneX lab testing in CA and find a Lyme Literate doctor through http://www.ilads.org/
2. Can somehow muster up the funds to get treatment. The CDC does not believe chronic Lyme exists so we pay out of pocket if we want a life back. I've paid over $20,000 in the year and a half of treatment. LL doctors risk loosing their medical licenses to help us, so they do not work with insurance companies.
3. Get "lucky." That's what my doctor says. Because there is very little understanding of Lyme disease, it's basically a guessing game on how to treat it. There are very little studies and very small amount of funds going into the research of Lyme disease. People don't just get Lyme, they get co-infections of Lyme, that can make treatment very challenging. As far as I know I also have Bartonella, it's what has been attacking my eyes. https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/
Some updated treatment news:
My treatment stopped. My lever enzymes went through the roof and I have not been on any antibiotics for two weeks. I have to wait for the enzymes to go down before starting my treatment again. I have been on antibiotics for a year and half and I am scared as shit. I am scared that the bugs inside me will flourish. I am scared to death that some of my symptoms will come back and I will feel as I did 2 years ago. I'm scared that this is going to be the roller coaster of my life. On treatment, off treatment.
My doctor also told me to, "cool it mother" Violet Beauregarde style. I've been going a bit too hard, if you read my last blog post you can see why. I'm not ready for that intense of exercise and she's right. It's just hard to hold back when you are starting to feel better after 6 years of hell. I'm not ready for a lot of stuff yet and that's ok. The last thing I would want is to overdue it and have more setbacks. So I'm lightening my load a bit ;)
Also,
My promise to myself is to not let fear of what can happen control my life. Because as of late, I feel good, near normal good. Or maybe this is my new normal?
Here is my updated treatment video
Help raise awareness for Lyme disease and Take a Bite Out of Lyme
Since switching up my meds and going throughoneyear and 6 months of high therapeutic dosages of antibiotics for Neuroborreliosis Lyme disease, I can safely say I am a new person.
I'm not the same person I was 7 years ago and I will always miss her. But I'm a better version than her in many ways. One of the things I'm most grateful for is to have at least 90% of my brain back. Inflammation in the brain is very serious and very scary. Much of me has come back and she is bursting with energy, a sense of humor, smiles, and way less naps! Like I said in my last post, the side effects of my antibiotics are now starting to show more than my actual Lyme symptoms. For me this is great news!!! It means remission is truly right around the corner. Although my eyes still bother me every single day, muscle pain exists in my upper back and neck, and my brain can get a little foggy when I'm sleepy; everything has been drastically reduced or eliminated. I am starting to feel very much the way a healthy person should feel!
Here is my original blog post showing most of my Lyme symptoms from fall of 2014. Some symptoms are not on this list because it took for them to go away in order for me to realize they were Lyme related, such as anxiety and mood disorders. It's amazing the changes and really hard to believe I have been in treatment for one year and 6 months.
I'm so happy to be getting better from this disease, I realize some people aren't as lucky and I'm very grateful. I work hard for my health and I know that's a significant reason why I am getting better. Although, this is something that will stick with me forever, it's not something that's going to control me and kill me any longer.
Sooooooo what have I been up to now that I am feeling better?
Of course taking care of myself is still my first priority, but what else?
1) Working out! I have set some new goals for myself. My body has changed drastically from my Lyme disease and hypothyroidism, caused by Lyme. Quite frankly I'm tired of feeling uncomfortable in my body. I really want to make some long term changes now that my body is FINALLY responding to exercise. I'm about 20% body fat and I'd like to be in the teens.
I have been doing 3-4 full body, very intense circuit workouts a week; this is my favorite kind of workout. I also incorporate 3-4 longer, easier bouts of cardio on the step mill, ladder, bike, or treadmill I also work in a muscle group or a two a day. I give myself one active rest day a week and do abs 4 days a week. Muscle pain was one of my most severe Lyme symptoms so it's absolutely fantastic that I can workout like this and not feel extreme pain, soreness and fatigue on a day to day basis. I still avoid any rowing motion and anything that activates my traps, upper back and neck.
It feels great to be able to workout at the level I have been. It's been 6 years! Just a year ago all I could do was 20 minutes of cardio! I'm starting to see some results but I'm not stopping until I reach my goals.
I am not the kind of person who posts half naked photos of themselves on the internet for attention, the only reason I am doing this is to motivate others reading, especially for my Lyme warriors out there. There was a time when I thought I was dying and lost nearly all my muscle mass and now I'm out there making lil bits of progress everyday. There are times I don't feel like working out, and on those days I remind myself that it makes me forget about my eye pain for a lil while, and I do it. Hey whatever motivates ya!
Don't stop get it get it
2) Eating, cooking, more eating and more cooking! I food prep 2 days a week, Sundays and Wednesdays or Thursdays. I have also really cleaned up my diet. I get a little stubborn sometimes because I have already given up multiple food groups for my health and that makes it hard to give up even more. The remaining few food items that I have to give up is quite the challenge for me. Examples of my bad food would be something like corn chips and dark chocolate.
I decided to do a local veggie delivery service. Every other week I get a tub full of different kinds of vegetables. It's great because it gives my diet variety and it's helping to bring the spark back and make cooking exciting again. https://www.dandelionorganic.com/box-prices
I eat 3 meals a day and usually 3 snack meals a day. I've calculated all my macro goals and track everything I consume on a daily basis. I weigh my food and usually consume protein and veggies. My snacks are pea protein shakes, berries, and kombutcha is now considered a treat for me. And nooooo this does not control my life, there are cheat moments and they are filled with my local co-ops Tony Roma bars! Sooo damn delicious.
Foooooooooooooooooooooooooooood
3) Enjoying the beautiful Pacific Northwest weather we have been having! I am happy to announce that I went on my first hike since 2014! I didn't feel an ounce of Lyme pain. My past hikes leading up to my diagnosis of Lyme had usually resulted in pain and lots of tears. I cried because I literally felt like I was dying while hiking and it was frustrating to not know why. I've also continued my walks outdoors. My bike was stolen a few years back or would have been biking! And I'm fully confident that I will be hopping on my skateboard and roller blades this summer. Even pondering running.
Summer of 2012-2014 I could not be in a car with the windows down nor ride my bike without my throat swelling. My allergies were so bad going outdoors was extremely painful, my eyes always felt like they had little rocks in them, making it hard to concentrate on anything else. I'm lucky to be able to tolerate the outdoors again!
Woot woot!
4) Planning a return to school to get my Bachelors! I currently have an associates degree and had to stop school from my Lyme brain and fatigue. I couldn't focus, read, and sit to study without feeling immense pain. When you have Lyme disease everything halts, including school for most. My life went on the back burner for 6 years and I am soooo over it. I'm ready to to challenge my brain and get smarter! I will be doing online classes through an accredited college to get my Bachelors in Public Health Services with a concentration in Public Health and Wellness....Hmmmmmmm sound similar to what I do now?
5) Rediscovering value in myself! Lyme took a lot away from me. I was self conscious, full of anxiety, unable to reach my goals due to limitations. I felt slow, my brain was slow, I was sick and tired, living in pain. I lived day by day pretending to be normal; smiling to everyone, but crying in the shower. The last six years my body was in survival mode, never really excelling or moving forward.
Looking back I do not know how I did it!
I continued to go to work with a smile on my face every single day, pushed through workouts, got through extremely difficult and challenging times only to come out on the other side healthier and smarter than before!
I have worked 14+ years as a personal trainer, completely lost my health, only to regain it, conquering bigger and better goals than ever before. I am back working close to 40 hours a week and just got offered an amazing position from a company who values and respects my work experience. I see the significance of my employment history and all of my accomplishments are really becoming obvious to me now. I absolutely refuse to be taken advantage of or be taken for granted.
And though she be but little, she is fierce. -Shakespeare
6) Advocating, offering advice & motivating others! This has to be the most important thing that I am doing right now. It's what gets me up at 5 am in the morning and why I go to bed feeling like I accomplished something great during my day. Witnessing my training clients break through mind and body barriers on a daily basis is fascinating. Even just seeing their spirit lifted after conquering a small goal such as finally being able to understand the concept of a hip hinge.
Other areas are my advocating. I advocate for Lyme disease so that myself and my fellow Lymies can be treated like human beings, and get proper treatment that doesn't cost ridiculous amounts of money so that everybody can get better. I advocate for women rights, having worked 14 years in a male dominated environment I know first hand what a mans club can feel like and I'm not down with it.
I enjoy informing others about health stuff! I know more than anybody that a gene mutation can prohibit gains when working out and that your t3 needs to be checked! I dedicate my life to inform, encourage, and educate others. Friends, clients, and family members ask for help and advice. Fellow Lymies reach out from all over the country for questions and to thank me for sharing my story on my blog and You Tube channel.
One of the things I love about the Lyme community is that everybody is willing to help you out, encourage you, and give you advice if you have questions. I realize I have helped others all over this country but many people have helped and encouraged me along the way. Thank
You :)
GRRRRRRRRRRRRRRRRRRRRRRRR
7) Taking all my supplements and doing things that support healing in my body! Gotta keep taking my pills. I will be forever taking lots of pills and I must say the practice has paid off, my gag reflex is nearly eliminated. I'm also keeping up on blood work and all the other millions of doctor appointments. You won't see me partying like a rock star anymore, I'm social and around, but my health and well being is far more important than my social status.
It's not odd to find lil piles of empty pill bottles lying around.
I don good. Real good.
8) Chillen with the homies and my "awesome, super sexy, part Canadian boy toy!" Hey, he said it. But I think he's so much more than that. Developing real and lasting friendships. Having deep connections and lots of love. I have always been a person who loves being around people. Lyme stole that from me a few years back, I lost a lot of friends from breaking plans and had anxiety in public situations. But not anymore! Hugs and snuggles fill me with joy and I'm not afraid to admit it. Sometimes I want to take a shower in love; wrap it around me and roll around like a dog in the grass! I'm excited for my old friends, the ones I have had in my life for years and years, and I'm excited for the people I have in my life now, and the ones I'm going to meet. I love and miss my family and wish they were closer. My friends and family respect me, understand to some extent what's going on with me, never give me shit for my insane diet, and never judge me. I love you for that! Here's to friends, old and new, you know who you are!! Keep it real homies and drive it like you stole it.
I'm writing from my bed, the place I've been for the last few days.
Obviously when I'm near death I don't change my clothes, you'll see. & It's kind of creepy I look 12 in this photo.
Apparently Minocycline and I don't get along very well and I had to find that out the hard way. It all noticeably started Wednesday with some odd muscle pain. I didn't think too much of it, I always have muscle pain, so I passed it off as post workout soreness. There were other warning signs though, that I should have listened to but I was so excited to have energy since getting off Levaquin that I disregarded them. Thursday night I had a blast and by Friday my breathing was extremely shallow and I was wheezing at every breath. In order for me to be able to breathe, by mid afternoon I had to lay down and try to sleep. It was pretty scary and I probably should have called my doctor right away but I couldn't really speak. At that point I assumed it was Bactrim causing the problems, because I had only just added that in 5 days prior. So I kept taking Minocycline only in the mornings until I could contact my LL...
By Saturday, my breathing was still off but I was able to meet an old roommate passing through town during the day, (one I hadn't seen in 18 years) and hung out with several different friends until about 9pm. Shortly after, it all went to hell. I had radiating pain in my mid back that shot to my shoulders, legs, and arms randomly. My head ached and I could get air through what felt to be a tiny straw. My instincts told me something was very wrong, but I still was not connecting it to the Minocycline! I did not see how I could be reacting to a drug so similar to Doxy, which I had taken multiple times during my treatment. Things continued to progress to the point that I found myself curled in a ball, on my bed crying in pain. So I contacted a friend who I had been with for a bit during the day and told her to leave her phone on and if things got worse we'd have to go to the ER. She suggested I pop some pain meds and luckily I did because I was able to stop the tears and get some sleep.
Wright State Univ Roomie
Most people probably would have gone to the ER but you have to understand when you have Lyme and are getting treatment for it, this stuff happens all the time. All of these things run through your head...
1. Am I truly dying? Because I have felt like I was dying hundreds of times due to Lyme, and I'm still alive. This is usually why I never end up at the ER.
2. Is this a Herx I am having? Are lots of bacteria going down right now?! I always hope it's this one.
3. Is this some other life threatening event that has nothing to do with Lyme (has yet to have nothing to do with Lyme)?
4. Could this be a toxic reaction to my meds and can I not metabolize them?
5. Do I need an Epi? Am I allergic to my meds? Toxic reaction and allergic reactions are different, I feel. Simply because some just cannot genetically metabolize certain drugs. Which I happen to find so very interesting! Here is a great article about genetics and medication.
People, I am not exaggerating! The sickest I have ever been was when I contracted Lyme and it spread through my entire nervous system. At the time I didn't know it was from Lyme but I was bedridden for a week, had my first migraine, flu, muscle aches, and pain everywhere! And this was a close number 2. I actually contemplated if I had gotten reinfected with Lyme! Although I did not have the flu and I was actually hungry while feeling like I was dying. That's something that doesn't normally happen. Weird.
Let's change the subject and talk about my last visit to my LL, a few weeks ago! The word remission was used! It kind of startles me that I've felt like ass since November and we're talking remission. But I know that I've been more sick from my meds and not my Lyme. In fact I don't even really know what I feel like because the abx seem to be really messing with me as of late.
My LL thinks we may be able to get me off abx in August! I still have Bartonella and we are still working on ridding it in my eyes. I was told that I may never be able to get rid of it in my eyes... but this girl is gonna fight till I die to get this crap out of my eyes. There is no way to live with it! It is ridiculously painful and annoying.
The word remission scares me. I realize that I have to start excepting that Lyme is something I will always have. The hope is that your own immune system can keep it at bay. The realization that it is a remission I will be going into and not a recovery hit me pretty hard, especially coming from my doctor. It's just something that I have to work at coming to terms with.
More details in my YouTube video!
But overall I'm getting better!! Although sometimes it's hard to see in a haze of drug interactions, toxicity, and side effects.
p.s my doctor again says I'm getting better because my diet and the fact that I am on abx. I was also told I will have to eat my wonderful Lyme diet FOREVER! But I knew that already.
-dairy free
-gluten free
-grain free
-sugar free
-allergen free (hopefully some of my allergies to foods have diminished some, I'll try to add some back in soon)
-I think that's all
I'm pondering what keeps me going and how others with chronic illness keep moving forward. What inside led me to follow my instinct by visiting several doctors, demanding tests and refusing multiple diagnoses for 4 years? What is the fire that persuades those with chronic illness to disregard what they are being told by professionals and search for the truth? I'll never forget the feeling, seeing a new doctor for the first time, he walked through the door and the first thing he said to me, "What's a healthy girl like you doing here?" I was ridiculously ill, but I guess I didn't appear that way to Mr. doctor. I pleaded with him to test me for Lyme disease and he eventually caved. He tested with the ELISA test that came back negative, like it does for all Lyme patients without a new infection. Later I had to endure, "I told you it wasn't Lyme." Why did I pursue further testing to find my answer?
What makes me get up in the morning and fight through my symptoms and go to work? Why are my workouts so intense every single day that they end with me lying on the floor, with parts of my body that have completely given out? I can't explain the burning in my brain and body that pushes me to total exhaustion but I can try. Some fight for their children, family, and career. I don't have that.
What I have is a broken Becky and all I can try to do is fix her. That's my life, every single day. I've been in terrible parts of my brain, felt extremely isolated and lonely, have had more pain than I would ever wish on anybody, and I've only moved forward from my breaking point. Setbacks are real and they happen regularly. I still pretend to be okay when I'm not, and quite frankly I'm not sure if I see an endpoint to this hell but with all that said, my stride is still a continuous forward movement.
I give props to anybody that has fought through an illness or disease. I get it. For me working hard isn't an option anymore, it's a gift. I've seen improvements, some days more so than others! I get up and go to work extremely fatigued and pumped up on more antibiotics than my body can handle right now because I remember the times I struggled to get through days from exhaustion and pain; hiding my misery from others and scared because I didn't understand why I felt sick.
My workouts are as intense as I can make them because I've spent years with crippling muscle pain. It was just a few months ago that riding a bike indoors made me dizzy and sick and walking was the only form of exercise I knew for months. Even when walking I felt my knees could give out at any moment. I work hard because there were days I couldn't get out of bed and taking my body for granted is not an option I feel comfortable with. Same goes for my brain, just months ago my brain was so messed up I couldn't speak, drive, read, or process information well. There is no alternative than to teach myself things I never thought capable of learning.
There is something to be said for the person who battles with an invisible and incurable disease on a daily basis. You too are the reason I still fight, because I am not alone. My strength will give you strength and our strength will change to world.
I cannot give up. The fire inside only leads me to believe that there is a plan for me in this life. I am destined to do amazing things.
I cannot wait to see my doctor today! My medicine needs to be switched and I have this intense feeling of lets do this! Put an IV in my arm, a power port in my heart, I will bring it with me where I go. Whatever needs to be done, let's knock this shit out. Let's do this because I can't take this recent bout of fatigue that has been going on for far too long!
P.s. from my last post...My heart is OK! EKG turned out normal.
Also, I've also got Smith blood, my dad's fighting cancer like a beast!
What do I even say about this last month? I haven't been wanting to write and that's just because I haven't wanted to face my feelings. By writing I have to acknowledge them, think about them, and have other people see them. I'm another year older and the years pass by so quickly. My stomach is in a twist of knots and the anxiety for my future heightens. Everybody I thought I was, I'm not anymore. The vulnerability that comes with it is something I am not accustomed to; when you are open you are vulnerable and when vulnerable, you risk pain. I never allowed myself to bleed before, the blood draw would have been prevented at perforation. I'm trying to find the light in it all.
You don't grow from the easy times, you grow from the hard times.
I've had a month of setbacks in my treatment. Symptoms came back that I never thought I would see again and the stress of the unknown is really getting to me lately, with every aspect of my life. I realize that being in treatment for Lyme is like a roller coaster but I thought my hills weren't going to be as steep and the turns not so painful. I just want my life to be normal again. I have been so patient with everything, something that does not come easy for me, but I can only take so much.
Here is a sum up of my health that I don't really want to talk about, but I am doing so because this is the reality of Lyme disease. It is the most painful thing I have ever felt and the hardest thing I have ever had to deal with. That is the reality.
I've lost 7 pounds in 8 days, something I didn't think was humanly possible for my body. I believe this to be more stress related, less Lyme related.
My training client watched my knuckle grow to the size of a a marble, after a morning of considerable stress.
I am starting to see a pattern here.
This is hours after it happened.
Why did you do that, grrrrr! A herx, from stress??
My medication is causing my heart to skip beats, which may now be a permanent heart condition. I get an EKG on the 28th, so we'll go from there.
I see my Lyme literate doctor the first week of march and hopefully we'll change things up. My muscle pain is aching in my neck and back again, it is ridiculous and is starting to feel like the norm again.
My eyes are fucked but the drops prescribed are helping.
On a positive note.
My energy is back up and my breathing has returned to normal after being taken off Zythro. I have no idea what was going on but I had shortness of breath the whole time on Zythro, Levaquin, and Amoxicillin. There is a drug interaction between zythro and levaquin that can cause heart problems and death. So I think the breathing problems were attributed to the drug combination. It feels good to be able to breathe again!
I have been able to maintain 5 days a week of consecutive intense exercise for at least 2 months. This is something that I have not been able to do in a very long time, and my body is responding to it. The response is shocking to me, it's been so long. Just SHOCKING.
I love working out in my "Take a bite out of Lyme disease" shirt.
What am I doing about all this stress and health crap?
Epsom salts, bubbles, and some glasses of wine.
Self reflecting, being anti-social one day and the next social. Reading, writing, cooking, forcing myself to eat salads, movies, uncomfortably long hugs, lots of veggies, like I turned into a vegetarian for a month so I am forced to eat them. My bed and blankets, walks outdoors, dog sightseeing, accepting acting jobs and invites, and I don't know maybe a little self loathing, exercise, heating pads, fermented foods and girl talk.
I have been feeling very defeated lately and I am trying to remind myself to keep moving forward, take the healing route (sooo less wine), and that everything is going to be okay.
I'm excited for this new year, more-so than I've ever been for any year. I'm excited for so many reasons I can't even contain myself! This post is a mix of what's on my mind and how my treatment is going. My brain is turning back on and I'm not quite sure how to put things together with so much happening inside of it, my writing feels like it's in shambles. I'm on brain overload.
Just so you know...
I conquer spirochetes, yo!
You might hear me mention how Lyme is shaping me into the women I've always wanted to be. I'm going to talk about that in depth a little bit. First off it's not just the Lyme who's doing it it's ME who's doing it. I've made major life decisions over the last year that were scary, last January I didn't have a place to live, I was staying at a training clients home. I was scared, having just being diagnosed with chronic late stage Lyme, at the start of my treatment, not having a brain that functioned optimally, out of a 7 year relationship, no family near by, and only able to work 15 hours a week. I had no idea where my life was headed. My family and friends wanted me back in Cleveland, but I refused because I felt like I needed to figure things out on my own and somehow I did. I pulled myself up and out of a black hole, rebuilding my world brick by brick. My life is still coming together and it'll be a long road to where I want to be, but the good news is that I'm well on my way and I see a destination point. Right now I feel stronger than ever before and I'm not talking about physical strength, although I am fucking strong! I'm talking about the kind of strength that allows me to be me. The strength that comes from being knocked down. I feel as though I can do absolutely anything after having gone through this last year, and that's a great way to start a new year! I know what I want and I'm confident in my ability. I recognize my self worth and do not measure myself against others. LOVE is a word I emerge myself in, a word rarely mentioned in my childhood. I see the value and significance in family and friends like never before and I love selflessly, which is very worthwhile.
There are many reasons why people go into the black hole, not just a debilitating illness. My only wish for others struggling in life, for whatever reason, is to get there, to the other side. It's much lighter over here. So thank you Lyme for guiding me to the other side!
I love both of these songs and combined it's gorgeous and they are so adorable.
People, don't ever take your brain for granted. I didn't realize how messed up my brain was for so many years, until it came back. My mental health had always been pretty normal until I got Lyme. Looking back I see how much it had been messing with me. It started out with bursts of anger and weird behavior out of nowhere. Then depression, anxiety and inability to focus and read. Later, I literally went from someone who loved being in social situations to a hermit, I would hide by my then boyfriends side and I hated running into people I knew in public????
Next came in the summer of 2014, slurring of speech, walking out of grocery stores not remembering how I got there. The scariest of all was when I started driving on the wrong side of the road and getting lost in familiar areas. It took a lot of my personality away with it to. I thought it was just my body naturally reserving my energy, being more mellow and expending only available energy to get me through a day. But it was the spirochetes! Those lil fuckers stole Becky!
It feels amazing to have more than a few pieces of Becky back. Everyday I feel more and more like myself, I'm even beginning to be able to rap again! I haven't been able to do that in years and I love it...Lyme brain+rap star = no success.
Part of spirochetes residing in your brain means that you may not dream. I haven't really had a dream in two years, but New Years Day I woke up to Dizzy running around on my bed, I was soooo ecstatic. Even though it was only a dream, it was the sweetest dream to wake up to. I told my doctor how I've been having bits and pieces of dreams and she said dreaming is a sign of a healthy brain- in the Lyme treatment world. Yay!
Let's talk about my progress for a sec because I am very thankful for it. When I visited my doctor on 12/30 she was very happy with my progress and says I am doing soooooo well, just 1 year and 1 month into treatment!!!
One of the FEW symptoms left is my eyes, it seems that all the spirochetes in my body are chillin in my eyes right now. They look and feel terrible. My doctor is a little worried and wants me to see a LL eye specialist in Seattle. They do not feel good, I just try to ignore it all day.
My doctor switches up my meds every 6-8 weeks and unfortunately, I have yet to begin my new treatment plan because I am waiting for insurance to cover my meds. So frustrating. I also hope this is the year that late stage chronic Lyme disease can be recognized as a thing so our medical expenses can be covered and those suffering, unable to afford the ridiculous cost of treatment can GET BETTER
My eyes...ohhh and hip. ouch.
I found my symptom calendar from last Dec/Jan
I have not had a stuffed animal ever in my adult life. Who would of guessed that a stuffed dog would be the best gift I could receive one bad day.
The other day I started bawling in the pharmacy, I cried so hard the pharmacy technician started crying too. I love the workers at my pharmacy, they go above and beyond to help me. I was getting two of my prescriptions refilled and my insurance hadn't kicked in yet, from when I renewed it. The cost of my medicine was $1000. The technician assured me everything would be okay and that I just needed my primary doctor to rewrite the prescription for me because my LLMD was out of network, or something. My primary care doctor had done that once before, for my Bicillin injections; http://brewlifewithlyme.blogspot.com/2015/06/bicillin-injections.html It was at that time she assured me, "If this helps Lyme patients, then we need to be doing it." What she was referring to is the use of long term antibiotics and she's right. If I had taken one short course of antibiotics and followed the cdc guidelines, Lyme disease would have killed me. Finding a doctor like her is rare and I am really lucky to have her on my side.
I'm stressed, it has not been an easy month for me.
I'm trying to figure out how I am going to pay for my next year of treatment and it's not going well. I know that I will find a way, there is no other direction for my life to go but Lyme free. It's hard sometimes to deal with the stresses I face.
Yesterday I was at a friends house and she turned on The Real Housewives of Beverly Hills. I'm well aware of Yolanda Foster and her struggles with Lyme disease, though I do not watch her show. In this particular episode she was at the dentist getting her white gold taken out of her mouth, she had already had her mercury fillings removed in hopes the white gold would not effect her health negatively. But her body still showed elevated levels of heavy metals, which is common for Lyme patients and makes the disease worse and the person sicker.
Telling her oral surgeon not to 'worry about the beauty' of how her teeth ended up looking, she broke down in tears when admitting her fears at the operation. 'I just want to be sure that whatever you take out and put in it's going to be safe,' she cried. 'Wouldn't be great if I just woke tomorrow and I have a normal brain?' she said as she sat back in the operating chair, crying as she added: 'I just want to have my life back, take care of my babies.'
She was explaining to the dentist that she just needs something put in that is not going to continue to make her ill, as she broke down in tears. It's incredibly hard to watch and it's a feeling I know all too well. A women who is willing to do anything for her health, who only wants to rid herself of this horrible disease. That feeling you get...it's gut wrenching. The moment the tears come on and the utter frustration that you do not have control over your health. The fear that there is something that can prevent you from becoming well. It is so scary and every single day it sits there on your shoulder like a devil, waiting for something to go wrong. When shit hits the fan that feeling of pure hell washes over my entire body, freezing me in fear for the moment. But in the end it only fuels my determination to beat the shit out of Lyme disease.
The only one winning is me.
Yolanda does not belong on that show, Lyme disease has changed her like it changed me and like it changes all the others who endure it. Life becomes so much more than what's on a fucking Starbucks cup.
I say that I wish that dumb red cup bullshit was my biggest concern in life right now, but i'm only kidding. I would hate the person I was if that's what I spent my time fussing over.
P.S Here is me, on a good day, the day the world worked in my favor and I was able to get my Lyme & Bartonella killing drugs!
After a sweaty workout in my gym, while stretching, I found myself looking out the window at a field very near to were I contracted Lyme, and it occurred to me, that I have a disease. A disease that hinders my ability to be the best version of myself. A disease that nobody knows if you can actually recover from and you have to seek out "secret doctors" to help you.
It's bizarre, I guess as the fog of Lyme treatment diminishes a little more each day, I'm beginning to see my diagnosis from something different than the original shock and I guess I'm adjusting to the realization that I'm always going to be a little different than before Lyme.
Something else smacked me in the face this week. I miss my dog, Dizzy. She lives with my ex-boyfriend, I get to see her but it's not the same. I miss her sleeping in between my legs every night, snuggled in my arms, and laying on my warm clothes that just came out of the dryer. I used to pretend that she had all the same food allergies as me, I did this so I wouldn't feel so alone while trying to figure out why I was so sick. You never feel alone with a dog by your side.
The world is super strange and hard sometimes, things happen for reasons unknown, but it's how you roll with it, that defines your world.
November 16th 2015 marks a year of Lyme treatment, I never thought this day would come. It's shocking to me how quickly time goes by.
Here is a movie montage I made of the past year. I made this movie because I want to show my progress to others who may be suffering through treatment and give them hope. Also, because I'm a huge dork and I want to start learning more aspects of film making. It's 20 minutes long!
AAAAAAAAAnd, I'm getting better! Last year I was sick as shit. I like to use percentages, I'd say I was 30% upon beginning my treatment. This year, after 1 whole year, I can say that I'm about 85%. My goal is to get to 100%
My remaining symptoms are:
-Eye irritation/swelling
-Muscle pain in my neck and back
-Brain fog & brain exhaustion
My doctor thinks most of my Lyme is gone, so we are focusing on Bartonella, my co-infection. My doctor confirmed that another year of treatment is needed.
Nobody really knows why some people get better with Lyme and others don't. There are many factors involved in Lyme disease and the multiple co-infections that can stunt progress. My doctor chalks it up to me being lucky and having good detox pathways, and for someone with a MTHFR gene mutation, that surprises me. I also tolerate antibiotics very well, but require much larger dosages than women my size. She prescribes to me what she would prescribe to a 200 pound man (just as reference, I'm half that).
Overall, I am lucky enough to report that I am making progress in the fight against the unknown. Here are some things in my control, that I believe are helping me to get better:
Eat, Plan, Prepare Healthy Organic Food
Prior to my diagnosis I already figured out how bad certain foods made me feel. I haven't eaten dairy in 5 years and gluten in two. I had adapted a Low FODMAP diet and eliminated my allergens and sugar prior to treatment. Once treatment began I made sure to eliminate all grains and most fruits on top of everything else. I cannot stress enough how important a clean diet is. I truly believe that this is the #1 thing you can do to get better. If you eat foods that inflame your body you are only hurting yourself and foods high in carbohydrates and sugar only feed your Lyme bacteria a 3 course meal. Eating clean also means eating organic.
There were many many days early on in treatment that I was too sick or too tired to go grocery shopping. Sometimes I had help, many times I didn't. In those situations I would do the best I could to get healthy foods in my body. My local Co-op saved me, even to this day, I absolutely do not know what I would do without their prepared foods! Other times,when food grossed me out from all my meds, having friends there to ask me if I ate and remind me to do so if I hadn't is very helpful.
On your good days make sure to go grocery shopping, prep your food and spend a day in the kitchen cooking. Prepare all your food so you have it for the next few days. It takes time and energy and I know you are exhausted but make sure to do this!
Me Time
Since feeling better I have been really busy, but I always try to have some down time doing things I enjoy or things to make me feel good. Going on walks, taking epsom salt baths, cooking, writing, surrounding myself with people I enjoy being around, taking acting jobs, sleeping, socializing, and working out. Allow yourself to do the things that make you feel good.
Another thing I have to remind myself is my #1 mission in life right now is to get better, it has to be my main priority. I get a little excited when my health improves and want to conquer the world, but the reality is that I am still not 100% and I can feel the stress it puts on my body. If I want to be the best person I can be when I'm clear of this shitty bacteria I have to focus on getting better now and taking the necessary steps to get there.
Remaining Positive
So many times I wanted to die. Lyme is not easy and I found myself using my acting ability daily. Early on in treatment I walked around in a heavy fog. It was hard to move, think, drive, work, talk, do anything really. But I did it every single day. The only thing that gets me through the hardest times is knowing that it's only temporary. I would have to tell myself that things will get better, and guess what? They did and they can for you too. Just be positive in your thinking!
Daily reminders are another way to stay positive. Nearly every morning I read a little piece of paper that was from my fundraiser, it's tucked in my mirror, it reads Becky Beats Lyme. Reading that is a great way to start my day. PEOPLE, you people reading this can make a sad day happy for me. If it wasn't for some of the positive reassurance I get from my lovely friends I would not be able to do what I do. So thank you to everybody who tells me how strong and amazing I am, and all the other compliments you give me, it honestly keeps me going :)
I love helping people, I put my nasty Lyme disease out there on the internet not for attention, but to help others going through Lyme disease, or people who have yet to get diagnosed but are looking for answers. If it wasn't for other Lyme suffers exposing there illness, I may have never figured out that I have Lyme disease, because doctors sure as hell weren't helping me. Anybody I touch through my You Tube channel or my blog makes me incredibly glowy, it's why I do it.
This sweet girl with Lyme who is thanking me for exposing my illness and being positive. It makes my heart hurt so good.
Exercise
Even at my sickest I was exercising at 5am! As a trainer in a gym, I was embarrassed how little I could do, once I began treatment, so I worked out at home for the first 6 months. I did only what I could, even if it was 5 minutes of abs, once a week, it was something. When I started feeling better I was able to head back to the gym, there are many times I push too hard. In fact the absolute hardest thing for me during treatment is to hold back. It's incredibly painful to step back when you are watching others push so hard through workouts and life. So many times I cried, I would go into the office mid workout, sit on the floor and cry. I just wanted to be normal again. So take it easy, do what you can when you can and try to be as active as you can be. Don't compare yourself to others. I feel incredibly strong now knowing all of what my body has been through. I'm proud of myself, and want to be an inspiration for other Lyme sufferers. Have a Great Doctor, Someone you Trust
Having a doctor that knows what they are doing is key to beating this illness. Be honest with your doctor and speak up when you feel like something isn't right. Find a Lyme Literate doctor, they are trained differently than regular doctors and can help you to get better. You must do the rest though!
I'm not perfect
I still drink a coffee a day, rarely two. Sometimes I eat something with some sugar in it and I definitely still drink wine, cider, vodka, bourbon, and tequila, in moderation. Every once in a while I buy a bag of corn chips and go to town. I struggle with sleep sometimes and don't always take appropriate steps to detox. I get depressed too, when I start thinking about what Lyme has taken from me over the last 5 years and I cry because I don't know when I can be normal agian. Sometimes I spend my time with people I love when I know I should be home sleeping. I occasionally party like a rock star and stay out all night. I've forgotten to take my pills before and every once in a while I choose to not take my very large quantity, just because. Since starting to feel better I find I definitely overdue it sometimes with my schedule or gym workouts. These things may sound petty to others without Lyme, but I believe they can make or break your success in treating Lyme disease. It makes me happy to feel social and human so I refuse to take everything away, if I go out on Friday, I take good care of myself on Saturday. Finding a balance is important.
I also struggle to remain positive at times. Right now my Bartonella meds are kicking my ass and i'm in a lot of pain. I'm struggling in many aspects of my life. When times are tough i go back to the word temporary!
Overall, if you drink, do it in moderation, take your detox baths, eat organic, lots of veggies, and make all of your own food. Limit starches, don't eat gluten, dairy and anything that inflames your body. Get sleep, have hobbies you enjoy doing, take good supplements and get exercise. Try not to consume your whole life with Lyme. I educate others, and share my story but most people I see in my day to day life have no idea the struggles I've gone through. They see me for me, and if they happen to find out, it shocks the shit out of them and that's the way I prefer it to be. I am so much more than my Lyme and so are you. Even though it consumes our body and have taken over our lives in many ways, don't give it the satisfaction or the attention it wants.
Be bigger than Lyme.
Try to focus on the future, what are you going to do when you are done with treatment?? Have hope that there will be a future where you can live a healthy happy life that is Lyme free.
