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.
Maybe you are interested in adapting a new healthier lifestyle, or you're bored and want to get creative in the kitchen. Or maybe you're like me and have a chronic illness that requires you to have a limited diet. Here are some of my modifications, the foods that make me feel like a normal person. All the replacement foods here will be gluten free, grain free, dairy free, nut free, sorghum free and all my other allergens free :) I've also listed some of my favorite places to get recipe ideas!
Replace grains and pasta with:
Spaghetti Squash
Really easy and not too bad.
Zucchini noodles
I allow myself rice about 2x a month, when I do, I eat this, it's so delicious.
Replace bread & pizza with this:
(I am allergic to sorghum which is in most gluten free items, so I cannot use typical gluten free bread things)
This is sometimes too starchy for me. I eat it in moderation.
Expensive, but saves my starving stomach.
I make turkey sandwich, tacos, anything can get
wrapped up in this goodness.
Always use more cauliflower than the recipe calls for.
Try different baking flours, make your own bread. I've used tapioca flour for rolls and coconut flour for bread, the ideas are endless. Nut flours are great to bake with, but I don't do nuts right now.
Don't use sugar use maple syrup or honey! Dairy Substitutes:
This is my favorite brand of coconut milk without guar gum. It's great for creamy soups and sauces and has saved me from going crazy.
Soy milk is the only milk I can drink right now, so this goes in coffee and smoothies sometimes.
No Butter: That's ok, I use a bunch of different oils, for variation. Ghee is not an option for me, but maybe you can tolerate it.
I use mainly these oils:
-Grapeseed oil
-Avocado oil
-Coconut oil
-Sesame oil
-Olive oil
That's all I've got right now, my brain is fried :)
My updated treatment video:
Fuck this week! Here is what I've been listening to.
Just when I felt like an ass for listening to Taylor Swift, Ryan Adams came out with his own version of her album. It made me feel much better about myself :)
When you live in a place like New York and LA, you see celebrities, you even party with them sometimes. It's something that happens and it's no big deal. I've met Kevin Spacey, Tommy Lee, Laura Peppon, Kim Cattrall, Elizabeth Shue, talked shit to Parker Posey, parted with Johnny Knoxville. Waited tables on Andre Agassi, Shannon Doherty, the Culkin brats, Doogie Howser. I've seen Rebecca Romijn, all of the That 70's Show cast, Lindsay Lohan, one of my favs Nicole Richie, Frankie Muniz partied like a rock star, Matt Damon, Ellen DeGeneres totally checked me out, my heart throb Ethan Hawke, (pre, cheating on Uma with the nanny, who cheats on Uma?!), Brad Pitt, a few models. The list goes on, but nobody made my heartbeat pound the way it did at my local Saturday farmers market.
You're never going to believe who gave me this flower!
Living with Lyme disease in Bellingham, WA there aren't many options for support, nobody truly understands what I am going through, let alone even knows what Lyme disease is. In search of someone to relate to, I began seeking out support groups through social media. But what has actually happened, is that I am being reminded 24 hours a day that I have a disease. There are constant reminders that I have Lyme Disease. I'm one who wants to live life, and do the things I once did, only better than before, not sit home and be reminded of my Lyme!
The constant daily messages and posts become less about hope and more about misery, it can be a bit of a bummer.
I strive to move forward and I don't plan on being ill forever.
I have the knowledge and discipline to get better.
Now is the time to focus on success stories, the well, and hope!!
My celebrity, the one who makes my heart race, my inspiration, and where I find my hope is Olympic athlete Angeli Vanlaanen.
We got this...I'm herxing really bad here, from Cat's Claw
After my demanding of lab tests, multiple naturopathic doctors, a few regular doctors, being diagnosed with multiple odd things that I refused to believe, my persistent research, and determination to find out what was wrong with me, I had learned enough about Lyme to self diagnose myself with it. But there was always that:
No, not me?!
That really wasn't a bulls-eye, was it?
Did I see a tick? If that was a tick, that shit was tiny.
Wait, doctors and vets, tell me Lyme isn't in Bellingham.
There was denial until I watched Angeli Vanlaanens Lyme video. I had a change your life forever kind of moment, my heart sank, I cried, and I cried, and I still cry, every single time I watch this video.
To this day the movie gives me an undefinable feeling, it's an emotion that's going to make me a phenomenal actress. Every single thing she says, I had said to myself or others at some point in time. I had Lyme. Sigh, off to get blood drawn for IGeneX.
I was so unbelievably lucky enough to meet both Angeli and her mother Allain!!!!! Permy smiles were all up on my face, the whole time. When I asked Angeli how she was doing, she says she feels great, but the emotional scars take the longest to heal. I get it. It's not just the physical pain you have to recover from, it's the emotional trauma of everything endured on your Lyme journey. Angeli was really sweet and happy. She radiated sunshine and gave me a flower. I was giddy all day, until I broke out in another herx rash ;)
Her mother is a peach and my heart pounded just as hard.
Thanks Angeli for being an inspiration for myself and others with Lyme Disease!
*The last two and a half weeks, Lyme has been kicking my ass, it all started with the side effects of Rifampin. That drug knocked me on my ass, I had to stop taking it due to the extreme fatigue and nauseousness. Food was hard to tolerate and it literally gave me narcolepsy. During times like these, I try to remember all my symptoms that have dissipated, and the moments when I feel great. A year ago, I was at my absolute worst, so scared, confused, and sick. Today, there is progress and I'm fighting hard to regain my health. I want to get better, in every way :)
One year ago today, I left work in tears because my eyes had swollen yet again. One year ago today, I would find myself curled up in a ball on the floor in hysterics. What is wrong with me?! I couldn't take it anymore.
This was my rock bottom, not months later when my world fell apart. My rock bottom was when this illness was at it's absolute worst. Yet the people closest to me were in denial. I was dying, every part of me had been taken away. I traveled to Maine a year ago, from Washington state. Travel was always ridiculously hard for me to do. Making travel plans, immediately put me in a state of anxiety, because I knew half the battle would be getting out the door. Airplanes hurt my joints and made me retain water for days. I felt horrible while visiting Maine, I did everything I could to try to be normal, but normal was something I just couldn't be anymore. I ended up in tears on the last day, hours from having to go back to the airport, on 3 hours of sleep. I just couldn't bare the thought of what the next 24 hours of travel would look like. My body was shutting down and I didn't think I could physically make it back to WA. I wanted to be left in the hotel room for dead.
One year ago today, my brain wouldn't allow me to write or read. Going outside caused horrible allergies, and eating food would result in swollen eyes, stomach pain, and rashes all over my body. Work became difficult, because I found myself slurring my speech, losing my train of thought, and forgetting simple things I'd known for years prior. It was hard to see, because my eyes felt like they constantly had dirt in them and my vision would come and go in blurs. New and scary symptoms began appearing daily, preventing me from socializing. Overall, I was in so much physical pain, and mental distress, I could barely leave the house. If you go back to this blog below, you can review my symptom list. The list had reached it's maximum and my body had shut down.
Looking back to a year ago, a lot has changed, in fact my entire life has changed. Parts of it I don't even remember. Symptom wise, there has been a great amount of change. Here are some things that have improved from a year ago, when I was at my absolute worst.
Last year my skin looked like this:
I had melasma and brown spots all over it, I hated it, it made me very self conscious and gave me anxiety in public.
Today it looks like this:
This was not achieved by Hydroquinone, or any prescription lightening products used to erase dark sun spots. This was achieved by killing Lyme bacteria. So hey, dermatologists out there, maybe try to find the source of the problem, and not try to tell me to throw some shitty cream on my face. I knew even going to visit mine was going to be a joke.
I had a hugely painful, swollen joint that came after eating dinner one night.
I was told I had the beginning stages of Rheumatoid Arthritis???? Hmmmm, not really sure that exists. I even went back after my Lyme diagnosis to tell the doctor it was Lyme, like I suspected, and she gave me a pamphlet to read about a new RA drug that was on the market. Are you kidding me?
Today, my hand looks like this:
-Outdoor allergies diminished. Yes, I am talking about the girl who could no longer ride her bike because her throat would swell, or ride with the car windows down. I went to my allergist one summer and he did a scratch test on me. The nurse got so nervous watching my back, she ran and grabbed the doctor, he immediately had me take benedryl and told me my immune system was going crazy, but he didn't know why. I informed the office staff of my diagnosis later, and I can only hope he learned why the immune system may be "going crazy" on people.
This is before things got too out of control.
-My thyroid is officially balanced! I worked extra, extra hard at the gym, while living with Lyme and never saw any results, now I workout way less, and can see my body change daily. Another side note, for anybody who doesn't see results while working out. Go get your thyroid checked! Including t3, most doctors never check t3, that's what was off with mine. Also, when your readings are on the low end of the shitty, "scale" doctors go by, find a naturopath who will get you on some thyroid meds, it will change your life. You do know that the "scale" system doctors use is a bunch of bullshit, from symptom data years and years ago.
-My hair is almost back to normal! It was severely damaged 3 years ago, and could never bounce back. I had to wear clip-in extensions. For the first time in 3 years, I can leave to house without my fake hair in. Woot woot.
-The big food test. I've been pretty hungry since getting off Rifampin, I can eat large quantities of food lately, and my body is craving things like grains, that I normally do not eat. Generally, this would be a big problem...but lately, I've been experimenting with more foods, and taking risks at restaurants, with no ill effects. Throughout the past 5 years I've come to expect swollen eyes in the morning, stomach pain, and bloating if I eat anything out of the ordinary. This has not been happening lately, so I'm thrilled that there will finally be more foods rotated into my diet!!
-85% muscle pain free. Muscle pain was one of my first symptoms, my entire body was on fire, and I had knots all over. My skin hurt, and if you touched me anywhere, it would feel like a bruise. There were many sleepless nights with back pain. Yes, some may say that was the Fibromyalgia, but not me, I knew that it was just a symptom of something much bigger. Currently, I only get some pain in my upper back and neck, on and off.
-No more anxiety. I didn't have anxiety on the list, but boy was I living with Lyme related anxiety. I've calmed down quite a bit in a year.
-Brain Stuff. There is still brain stuff going on, but it is much better now. I may have a flair with treatment and herxing, but for the most part my brain is ok.
With treatment I do still have herx reactions that bring some symptoms out and make for some bad days. For example, muscle twitching, heart palpitations, light and noise sensitivity, headaches, dizziness, brain fog, tingling in fingers, and eye problems. This is to be expected with treatment and herx reactions. But overall, things have gotten better, I don't feel well yet, but there are good days :)
Every time I go to the doctor, she asks me what my top three symptoms are. I'd say as as of today:
1. Neck and back pain
2. Eye swelling and irritation
3. Brain exhaustion. This one is hard to explain, but it feels like you are functioning on no sleep, but you slept 8 hours. My body is awake, but my brain checked out, kind of feeling. It sucks!
Everything else has pretty much diminished, unless it pops back in for a herx, or for just a day or two.
Now that's pretty good, considering my symptom list from a year ago! So Lymies out there, remember, there was a period where things were much, much worse. It will get better with time, and treatment. If you're at your rock bottom, I'm here to give you hope, that things will get better. I have to remind myself of this DAILY, in order to get up in the morning, and remain positive, in my thinking.
Here is an updated treatment video, minus the Rifampin, that has now switched to another Bartonella killing drug. I'm going to make a video on my horrible experience on Rifampin soon.
Sometimes you just need somebody to tell you everything is going to be alright...But that's for my next blog.
I'm waiting for the day when I get theall clear from my LL. People say you never fully recover from Lyme disease, even Dr. Richard Horowitz, one of the leading doctors researching and treating Lyme disease. The key is to get your immune system to function at a level where it can keep the bacteria under wraps. So you are then able to have your symptoms under control and fight the disease naturally, without medication.
You go into REMISSION.
The scary word that I've been neglecting to talk about. I truly want to presume that all the lil fuckers are gone, but the truth is, nobody really knows.
This is a really great book written by Dr. Richard Horowitz.
This book is meant for doctors to read, but anybody who struggles with their health should read it. There are a lot of people being diagnosed with mystery illnesses, such as Chronic Fatigue, Fibromyalgia, ALS, POTS, MS, Multiple Food Allergies & In-tolerances, Thyroid disease, Psychiatric disorders, Rheumatoid Arthritis, Lupus, and other Autoimmune conditions. If you have been diagnosed with any of these or have symptoms that mimic these conditions, there is a good chance you have Lyme disease or a co-infection of Lyme.
One thing I know is that I can do everything in my control to kill bacteria and once I am in remission, continue doing those things, forever! My LL is a freak about it, she had Late Stage Lyme disease herself, about 10 years ago. I know she's doing well today, because she is running a very busy practice in Seattle, and you can't do that with Lyme bacteria thriving. You know what else she does? Takes really good care of herself! She continues to eat healthy, keeps her body alkaline, and takes the necessary steps to NEVER, if one bug was left, let it thrive and spread. I am going to be the same way. Taking great care of myself prior to my diagnosis was a priority, but Lyme has taken my health to a new extreme and that's something that will always stick with me!
I've begun to start planning my new Lyme free future! I have so many exciting things I want to do. I have been sick for 5 years, treatment could last another 1.5-2 years. I've been feeling better so I'm already going to get the ball rolling, and here is what I'll be doing to better myself during the remaining parts of my treatment:
1. I'm going to start taking classes toward my new major of choice. I contracted Lyme about the the last quarter of my schooling for my associates degree. Even though I was able to take a few classes after that, it really put school on the back burner. When you can't read a sentence, how do you continue with schooling? What's fascinating, is that while sick for 5 years with Lyme, I was able to recognize what I am truly adept at... And guess what? There is no science and math involved!!
2. I'm going to focus on myself. I always thought I was an independent person and I am in many ways. One thing has always eaten at me though...I've relied on people in my relationships too much. I want to be self-sufficient. Nothing can set me up for this more, than what I've been through over the course of the last 6 months!
3. I want to fall in love. Romantic is a word that does not describe me, nor is it in my vocabulary, but Lyme disease has given me a great amount of love. A love for life that I have never had before, and why wouldn't I want to share that with somebody?!
4. I am going to work on me from the inside out. Healthy foods, trying new forms of exercise, making new friends, being alone and being ok with it, helping others, making change, remaining positive, trying things that scare me. I am going to be open and receptive to this world and all that it has to offer me.
5. Get strong! As strong as my body will allow me to get.
6. Keep only the people who deserve to be in my life...in my life. To hell with the others, life is too short.
Okay.......Here is what I'm gonna do when I get the all clear
1. Go to Hawaii! Vacation is not in my vocabulary nor is it something I've done in 12 years. So you can bet as soon as I'm feeling 100% I am going to Hawaii to celebrate. Or maybe travel across Europe?
2. Move. I have no idea where, but moving from Bellingham is something I've wanted to do since arriving in Bellingham 8 years ago.
3. Get new headshots, get an agent, and get back out there in the acting world. I dislike seeing my Lyme symptoms on my face in my current photos. I've got quite the acting resume built, it's now time to see what other challenging roles can be added.
Tan
Not so tan
4. Continue to advocate and spread awareness about Lyme disease. I'll speak for the people who are too ill to speak and march for the Lymies too disabled to walk. The Lyme community needs the continuing support, we are not there yet. We need to know that there is a cure and we need to be able to get properly diagnosed! Chronic Late Stage Lyme needs to be recognized and treatment needs to be affordable. This illness has changed my life forever and it's shaping me into somebody I never thought I would be. There are really low lows and amazing highs, stories need to be told, and hope needs to radiate.
5. Be the best person I can be, physically and mentally, and live life that way too. There is no doubt in my mind that I am going to be climbing mountains and doing back-flips off beams. Late thirties are gonna feel like early twenties. I like the person I'm becoming, I have a purpose in life, previous to Lyme I just freewheeled by.
Thanks girls, for taking a bite out of Lyme for me. I was unable to make it to my friends wedding in Cleveland...So this is what my girls did for me!!!! So awesome, I love them all.
Before I start this post I want to say that I have been feeling phenomenal. There has been lots of downers, (one of which you'll read about right now) to get me to this point, and I know there will be more low points during my treatment. But if my highs feel like this, then I'll take the down days, killing more bacteria! I have been ill for 5 years with Lyme disease. For the first time in five years, pieces of the real me are shining through. It feels unbelievably great to be feeling better, there are no words for it, just smiles. :)
My body has been unresponsive for five years. For the last six years, up until I started treatment for Lyme disease, I used to wake up at 5 am and go to the gym to do fasting cardio, followed by weight training. I did this 5 days a week and I also ate a clean diet of 1200-1400 calories a day, anymore I would gain weight.
Throughout the last five years I've eliminated gluten, dairy, grains, and sugar. Still, my body is unresponsive. Did this frustrate me? Yes. Did I work as a personal trainer and struggle with my own body? Yes. Do I still? Yes. Did I know why my body wasn't working correctly? No. That is until I figured out that I had Lyme disease, which had hindered everything in my body, including, my hormones and thyroid.
My body has a great amount of healing left to do, and my thyroid and Lymphatic system still aren't functioning where they should be. I try not to stress about it, because I know things will get better, but my health has to get there first. It is disheartening, I'm not gonna lie, it's hard to know that I do everything I can physically, and I'm unable to achieve my fitness goals for reasons beyond my control.
I had a bad experience when I entered the second antibiotic into my new protocol for my treatment of Lyme. I had my first herx reaction from hell, and I broke out into a horrible rash all over my body. If you are unaware of what a Herxheimer reaction is, head back to this post. http://brewlifewithlyme.blogspot.com/2015/03/lets-talk-about-herxing.html
This happened because I was not detoxing my body like I had been previously. I wasn't taking the best care of me; pushing myself too hard at the gym, nearing passing out on several occasions. I stopped taking epsom salt baths, wasn't drinking enough water, and wasn't eating foods that heal. I know this wasn't an allergic reaction, because I made sure to do my trusty scratch testing. Below you can view my scratch test for Amoxicillin.
This is only a 2 on my scale.
With every new challenge that arises in my treatment for Lyme, comes a lesson. I'm always trying to figure out the lesson from my Lyme. I believe that certain things happen to certain people at definitive moments in their life. Lyme found me in the field, and it sent my life on an entirely new path. I can be pissed about it, or I can take this experience and grow from it. Once I've crawled my way out of this hole, I will be a changed person, I already am. My Lyme lessons will be with me wherever I go.
The video above describes my feelings about this rash, and what exactly was going on with my body.
Below are a few photos.
By the way, I feel fucking amazing. I am killing those lil fuckers.
There is a lot of superficial in life.
I work in an industry where taking selfies in front of a mirror is the norm, people put sole value on their external appearance. We all know that external beauty fades and I'm lucky enough to experience my body in a completely different manner. Having an illness like Lyme disease, does that to you, it takes away all control, and weird bacteria take over. The saying, "you are what you eat" doesn't apply to me, because I have lil spirochetes eating away at cells, collagen and entire systems within my body. That's one of the first things I remember feeling when I knew I was sick, but didn't know with what. I remember feeling as if aliens had taken my body over, I had no control. When your entire body is infected and not functioning properly, you begin to see the human body for what it is, not just a nice ass and a hot pair of shoulders.
If this rash could happen to me because I wasn't taking the necessary steps to detox my body, it got me thinking....How else am I damaging my treatment and overall purpose to get better?
As symptoms started to improve, I began to overdue some things and became a little too nonchalant about my current health situation.
I'm learning to find a peaceful balance, but it takes time, a little trial and error, and a lot of love. Self love.
Don't overdue it, only do what you are able to physically.
If I overdue it, you can find me on the bathroom floor, puking...and where is the self love in that?
