Drug Interactions, Toxicity & Side Effects

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.

http://www.wsj.com/video/is-your-medicine-right-for-your-metabolism/136C9A11-7FD7-4A0B-8205-A0803FD7963B.html

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


Thanks for reading!!!!!!!! Happy Spring!

The No Title Post

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!

Thanks for reading.

What Do I Even Say

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've recently been taken off zythro to prevent heart damage, but I'm still on Levaquin (since November) and I'm scared.  I've actually been pretty scared lately.  Levaquin can cause permanent damage and there are many law suits from other users.  And of course the articles on it are flying around my news feed, making me sick to my stomach.
http://m.wsbtv.com/news/news/local/local-woman-says-popular-antibiotic-killed-her-hus/njzwj/
http://www.drugwatch.com/2016/01/26/jj-faces-800-m-levaquin-lawsuit/

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. 

thanks for reading

Happy New Year!

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!

My dream girl!

Things in this post are already becoming a reality!  I can't wait until I can check them all off my list.   http://brewlifewithlyme.blogspot.com/2015/07/my-bright-happy-future.html

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.

Here is my update treatment video.

Happy New Year and thanks for reading!

Life is but a Cup, For Some

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!

My favorite Christmas song:

Thanks for reading!
-Becky

One Year of Lyme Treatment

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.

Here is my one year treatment video

My songs of the moment:

Thank you so much for reading!

Oodles Of Noodles: Modification Foods

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.

Yucca (cassava) flour:  http://www.ottosnaturals.com/recipes-1/
Coconut flour:  I make a bread from sweet potatoes, baking soda, vanilla, eggs, coconut oil & Coconut flour, that's it, it's amazing.
Plantain flour:  http://thecuriouscoconut.com/blog/paleo-plantain-flour-pancakes

Instead of soy sauce:

Coconut Aminos

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


NO BEER HERE :(  Drink

Dry Red Wine

Kombucheeee Beer

Dry Cider

NO mix Marg

Here are a few websites with great ideas for cooking.  I tend to follow what people would call the aip paleo diet.  But I hate using terms like that.  I just eat what I can tolerate and leave the titles out of it.
http://elanaspantry.com/
http://empoweredsustenance.com/
http://eathealthrive.ca/welcome-to-eat-heal-thrive/
http://autoimmune-paleo.com/

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 :)

Thanks for reading.

The One That Makes My Heart Race

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.

Please take a moment to watch her video:

https://vimeo.com/65479794
Learn more about her here:
http://angelivanlaanen.com/
And here's my first Public Service Announcement to spread awareness:
http://genero.tv/watch-video/39744

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!

My repeat song of the month.

One Year Ago Today

*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. 

http://brewlifewithlyme.blogspot.com/2014/10/okay-turns-out-im-not-so-well-ish.html

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.

Thanks for reading
-Becky