Today is TWO YEARS of Treatment for Late Stage Neurological Lyme Disease.

I used to imagine myself throwing a big I'm done with Lyme disease treatment party at my 2 year mark. That's how long I was told it would most likely take for me to get into remission. Throughout my treatment it seemed like the time would never come, but it's here and 
I'm not done with treatment.  

This ice pack on my boob and heating pad on my back is not making me feel any better about it today.

Ok Ok.  It's hard to explain to people what is going on with my body so I'll let Lyme specialist Dr Richard Horowitz do the explaining:    

          

"MSIDS stands for Multiple Systemic Infectious Diseases Syndrome.  Chronically ill, complex patients, no matter which diagnosis they have, often have simultaneous multiple bacterial, parasitic, viral, and fungal causes of their illnesses.  These people also have associated immune dysfunction, large environmental toxin loads, and hormonal disorders, mitochondrial dysfunction, allergies, functional metabolic abnormalities, sleep problems, and underlying psychological disorders." http://www.publichealthalert.org/-interview-with-dr-horowitz.html 

Some or all of these health issues prevent Lymies from getting better, not to mention co-infections.  So yeah, the realm of this disease is bigger than I would have liked to imagine or admit to myself in the beginning of treatment. It's not just Lyme, it never is for those of us who were diagnosed in the late stages. This isn't any new discovery to the Lyme community and it's not the end of the world for me to still be in treatment.  Now I can focus on getting the bad shit out of body and getting to 100%

Throughout my two years of Lyme treatment I have seen a lot of improvement.  My overall quality of life has improved and I do not fear waking up to new and crazy symptoms on a daily basis. I find joy in riding with the car windows down and being able to take a walk outside (because I couldn't do those things).  My stomach doesn't bloat in pain after eating food and my body doesn't hurt so bad I lie awake crying at night.  Most importantly I can think clear and speak freely.  I acknowledge and smile after each story I tell where I don't lose my words and slur my speech.  Overall I feel way less crazy in every way possible and have way less anxiety about everything in my life.  There may not be a cure for this disease but I find one of the greatest things is to not be swimming in the fear of the complete unknown.  I say complete because it is quite fearful to feel as though you are dying without knowing the cause.  Although, the future of my health may remain unknown I can and will continue to fight for the health of my body.

Something is still off with me though!  I've been getting raging headaches periodically in the evenings and ill feeling in certain environments. Symptoms are lingering, symptoms that should not remain.  For instance, muscle pain and knots, swollen eyes, joint pain and aching. There is an overall feeling of not being well that started to happen once the weather changed.  Rainy day allergies triggered an aha moment and a major concern that I am missing a very important part to my remission...

The load of environmental toxins within my body from mold exposure.  All the Lymies are like...Duh should have treated that first but I trusted my doctor would have done that had she suspected it.  Instead we misdiagnosed my symptoms and treated me for Bartonella, which I'm now learning is a common error.  Moving right along...

Even before I moved into my ex's house I told him I smelled mold.  It was always disregarded.  The water would pour out of the gutter on rainy Washington days with nowhere to go but under the ground where I laid my head day in and day out for 5 years. When I went to visit Dizzy I noticed black mold seeping up from under the back bathroom tiles. Allergic to my house was an understatement.  http://brewlifewithlyme.blogspot.com/2014/11/results-are-in-and-im-allergic-to-my.html  My house was killing me.

I began researching living in moldy homes and mycotoxicosis and came across Dr. Lisa Nagy, a native Clevelander who nearly lost her life and career from built up mycotoxins in her body.  While watching her presentation it became CRYSTAL CLEAR as to why I'm not better yet.  I was exposed to toxic mold at the same time I was exposed to Lyme disease, throw in a few genetic mutations and you have the perfect storm within my body to get real sick. Learn about mold guys, it hurts people and animals, even kills them.

Info on mold:
http://lisanagy.com/
http://www.slideshare.net/keithberndtson/mold-toxicity-syndrome-cirs
http://www.townsendletter.com/July2014/mold0714.html

This movie starts off slow but gets more informative as it goes.

My plan for year 3 of treatment:

And Yes I am very hopeful that I am!

1. Remain patient and try to not let this disease control my life in a different way than the pain has in the past.  Any free time I have is spent researching my illness to the point of exhaustion. This puts a tremendous amount of stress on my body and mind and is not healthy for me.  The need to incessantly research stems from my distrust in doctors and my drive to feel healthy again.  I'm working on finding a balance between taking care of myself, researching all things Lyme, my social life, my babe, and work.  

2.  Currently I'm jumping through hoops trying to get a $699 mycotoxin test covered by insurance so that I can see which toxic molds I have been exposed to.  Once I figure that out I will be going through a rigorous toxin elimination protocol. https://www.realtimelab.com/

4.  Get a second opinion from another Lyme literate doctor and most likely move on from my previous Lyme doctor of two years.  Mainly for financial reasons and trust in myself that I am moving in the right direction. There is a Lyme doc in Canada that is well equipped to treat environmental health concerns and Lyme disease.  This does lead to the problem of getting prescriptions in the states filled and I'm working on that one.

5.  Continue to do whatever I assume necessary in order to get to 100% and focus on how much more healthy I've become than before Lyme.  Prior to Lyme I would not have known I have a genetic mutation that can cause serious ill effect on the human body and can be managed.  I would not have given up inflammatory foods like dairy, gluten, grains, and sugar.  Honestly, I've learned so so much about the human body and it feels phenomenal to know mine the way I do.  I'll keep learning and continue to practice credible habits that I would have deemed as frivolous pre-treatment.

I want to thank everybody who has stuck by me during treatment, for those of you close by or far away.  Your encouragement keeps me going during the times I want to give up and when I don't think I can handle anymore.  It has not been easy and it is not over.  Thank you for understanding that I am doing my best and for educating yourself about Lyme for my sake and yours.

Love You

*Something to remember.  Don't forget about other health related things.  It's easy to overlook health concerns when you are constantly focusing on all things Lyme. 

SONGS!!

Thanks for reading,
Becky

Coming Up on Two Years of Treatment

This morning I cried in between jobs.  The weather is wet and a storm is coming and I'm nearing my 2 year mark of Lyme disease treatment. That's two years of swallowing nearly 36,500 pills, 3 months of shots in my ass, and many, many drops in my eyes.  That doesn't include the sleepless nights in pain, the piles of hair on my bathroom floor, pretend smiles, my lost words, and the hours taken from my days. The money spent, holy shit the money spent, and the many, many tears that have fallen from my eyes; their still falling and I'm still wondering.

I don't get any answers with Lyme disease and neither do the hundreds of thousands suffering.  We don't get answers. We either hope or we lose hope.

Uggggggggggggggghhhhhhhhhhhhhhhhhhhhh, I sound so depressed.  I'm not really.  I'm just going through something that has completely changed my life over the last six years + there is a future full of unknowns.  I feel like it's okay if I get a lil down about it every once in a while, ya know?  I spend most days positive and filled with things I love but sometimes the reality of my situation slaps me on my ass. And well...it stings.


Just real quick...I messed my hair up big time.  It went from the pretty upper right.
To the ugly orange clown bottom, then got fixed to the photo on the left, all in a few days.  Phewww, it was ScaRy.

I've gone through so many phases with this disease and you can read them all right here in this blog. Today I'm not happy that my life will forever be different. I've accepted it; That I'm always gonna be a lil different.  It's been a slow process for me but it's happening.  The funny thing is, and I'm sure my long time friends can attest to this, I've always been a lil different!  This just makes me a special kind of different and not everybody understands that kind.

Lymies...Surround yourselves with people who get you and if they don't get you, make sure they are trying to.  You deserve that.

On the bad days remind yourself of how far you've come.  

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

Guys! I'm almost there. My body feels like the second place runner, or the B+ student who tries so hard for an A.  I'm there but I'm not there, better, but not better.

I see my doctor in just over a week and I will be able to get an idea of how much longer I will be needing treatment.  When I began treatment in November of 2014 I was told I was looking at roughly 1.5 to 2 years in order to get into remission.  By now I know that it's a guessing game and remission doesn't come to all who try.   Right now we are on the rode to repair damaged tissues in my body from the spirochetes burrowing into all my places, and I'm still working on fixing my immune system so that when I do get off meds I can keep the bugs at bay.

 I'll be back soon.  But for now listen to this song.  This guy loves a woman who struggled with Lyme disease for thirteen years and finally got a diagnosis.

and this one.

Thanks for reading! Becky  :)

Eyes & Floxing

When I'm away from writing for a while  it's either because I'm doing really well or really horrible.  Last time I was doing great, but since my start on Ciprofloxacin all things went downhill.  I began to feel really tired and everyday I was exhausted by noon.  I would push through a workout only to go home and nap. Over the last month, bed is where you would find me if you came looking.  I had gotten really exhausted on another antibiotic in the same family, Levaquin.  The difference is that this time I had a full out toxic reaction to Cipro, that led me to the emergency room.  Both Levaquin and Cipro are in the fluoroquinolone family, the most dangerous of all antibiotics and one you don't want to have a toxic reaction to.  If so, something called "being floxed" can happen and that causes permanent damage to your body.  This article describes things in more detail.
http://articles.mercola.com/sites/articles/archive/2012/10/20/fluoroquinolones-side-effects.aspx

After taking this drug for 6 weeks my body could no longer metabolize it.  It caused a considerable amount of pain in my back, neck, knees, and legs that hit hard last week.  It took 6 days before I woke without severe aching in my knees, shins, back, neck, and head.  It has been almost 2 weeks since the reaction and I believe the medicine is out of my system and did no permanent damage. But only time will tell. I had to get off all medication until I saw my doctor.  Once off the medication my personality came back and my energy level is up.  It feels good to be me again, with little to no naps!

I saw my doctor 2 days ago but prior to seeing her I did something that I've been meaning to do but...
A.  It's not covered by insurance, which means even more money out of pocket and...
B.  I was too deathly scared to know what's going on in my eyes.

I went to an eye doctor literate in Lyme.  My eyes have been my worst symptom thus far and the time came for me to push my fear aside and find out what the hell is going on in there!  I was desperate for help. My appointment was scheduled the day after my toxic reaction, and there was no way I could physically drive 1.5 hours to my appointment in Seattle.  I called to cancel in tears because I hate having to cancel on people but I also hate having to cancel due to the state of my health.  I even woke and went to work at 4:30am in excruciating pain after 2 hours of sleep and a toxic reaction to my medication!

The eye doctor was very understanding and got me in the next day, luckily a friend drove me to and from (Thanks Staci ;).  Dr. B was a seriously compassionate doctor who has had many Lyme patients sit in his chair.  He told me it's always the same story with us;  Brushed off by doctors for years and stuck with irreversible damage due to the lack of knowledge surrounding Lyme disease in the medical community.  He took a look at my eyes and told me my Meibomian glands were not functioning.  He could see some serious build up of oil in the lower and upper lids.  Mgd is caused by several things, we believe mine is from the inflammation in my eyes, caused by the Lyme.  He says once I get the oil moving it should give my eyeballs some relief from the pain, swelling, and irritation.  Who would have thought!   It was so great walking out of a doctors office with an answer, you don't normally get answers from doctors when you have Lyme disease.

Here is a video that explains things really well.  Also, anybody who has "dry eyes"  this is most likely the reason why.  You really want to fix this problem because if left untreated the glands can stop working all together and then it becomes a full fledged gland disease.  Not good people.

I am getting the oil moving by heating and pressing daily on the glands in the eyelids.  He also prescribed me Restasis, which my Lyme doc does not want me to take because it lowers your immune system function. Dr. B also recommended I get back on Doxy, because that particular antibiotic helps to unclog pores.  If none of the above options work there is a procedure called Lipiflow.  

My Lyme doc did put me back on Doxy and she really recommends I do the Lipiflow procedure, it would give us a really good idea of what is actually going on in my eyes and offer immediate relief from the pain, discomfort, and swelling that I have.  It is a natural procedure that applies heat to the glands and light massaging.  The problem with Lipiflow is that it is not covered by insurance and costs about $1500.

Every part of me wants this to be the main problem in my eyes.  If this is the problem with my eyes I have just leaped over the treatment wall I've been stuck behind and I'm running towards home plate.  This last year both myself and my doctor have been stumped as to why my eyes weren't getting better, and I fear we may have been treating a co-infection I might not have.   One thing to remember, treating Lyme and co-infections is truly a guessing game.  Each patient is different and Lyme disease causes so many other conditions which all must be treated first if remission from Lyme disease is going to be possible.

I will tell you, it's only been about a week of applying heat and pressure to the lids, but I can feel a difference in my eyes already. Yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I press much harder when I'm not taking a photo ;)

Despite yet another setback I am still having a great summer and have been able to get out and do some fun things.  I actually feel good about treatment, even though this is the 4th Bartonella drug that my body does not metabolize, (and there's only 6 or so) and yet another setback of sorts.  After having gone to the eye doc I feel like it shed a lot of light on my current health status. I now have concrete proof that there is something else going on in my eyes.  This gives me hope that my only remaining symptoms right now are joint pain and sometimes muscle and neck pain.  How great would that be!?  Seriously,  how GREAT would that be?! Could this really fix all the pain and swelling around the eye??!!!  I have to remain Lyme logical though and not get too excited, yet.

Oyster Dome Hike

The plan right now is to work on the Lyme Arthritis and start repairing the damaged tissue in my body.  Both my doctor and myself feel like there might actually be an endpoint to my treatment in the future.  Let's hope so!

My weird update video

My Docs puppy lovins mcsnuggles

Doing what I can when I can.  A few days after the reaction.  Ballet workout and Bungees.

Thank you so much for reading and thank you for the kind messages I receive from readers.  

What Does it Mean For a Lymie When Liver Enzymes Are HIgh

My liver enzymes were up and then down and then up again : /  but down for now!

The definition of elevated liver enzymes means that the cells in the liver may be damaged or inflamed. Inflamed or injured cells leak out higher than normal chemicals, including liver enzymes into the bloodstream, which result in elevated liver enzymes on blood tests.
This means stop all antibiotics!  Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.

There are a few reasons why people can have elevated liver enzymes but the reason I am having them is because my medication.  I have been pumped up on multiple antibiotics for a year and a half.  I have also just had a severe toxic reaction to one of my medications just over a month or so ago.   I believe this is why my enzymes went up.
I am in tune with my body so I know when they go up, and when they go down, and I can feel this on a day to day basis.  When they are up I can feel a great amount of pain in my neck and back, my eyes look puffy, I don't look healthy,  I feel exhausted, sick and tired all over.  When they go down, the pain goes away and I'm back to my "new normal" self.  My doctor called a few weeks ago and in a nutshell she told me my enzymes are still up, that this is not good, and that I am not done with treatment and I need to get them back down!  I said something like, I'm on it, I will get them down!

After having gone on an Orcas Island get away I know exactly what my doctor is talking about. Some symptoms came back.  I'm not happy about this and I realize I'm not in remission but this was a huge eye opener for me.  The symptoms that returned were minimal joint swelling and achy joints throughout my body that I haven't felt since before treatment.  I remember pre-diagnosis thinking that the achy feeling was a normal feeling that everybody gets when they are active.  I'd say those were the two big ones and of course my eyes have continued to bother me.  I definitely don't feel like I have full blown Lyme.  In fact I'm pretty sure my Lyme is under control.  It's this damn Bartonella, it won't go away!

Orcas Island get away!

In two weeks I got my liver enzymes down.  This is what I did...

Water:  Lots and lots of water.  Flush those toxins out.  I use electrolytes because I hate plain water and it helps to get the pills down. I see a lot of Lymies using Nuun electrolytes.  But my current favorite is Ultima in the lemonade flavor.  Ultima uses maltodextrin and Nunn uses dextrose.  I'm not sure which is the better option for you.  If you know, let me know.

LiverCare:  All natural things to help filter the liver out and get things moving!

Cactus Water:   Low in sugar, has betalain antioxidants in it which have anti-inflammatory properties that help fight cell damage and they protect the liver from toxins.

Activated Charcoal:  This does so many things, it's a wonder that all the celebrities are using it.  It adsorbs chemicals and toxins.  Here is a great link to explain all of it's uses

https://draxe.com/activated-charcoal-uses/ 

Chlorella:  Another toxin binder

https://draxe.com/7-proven-chlorella-benefits-side-effects/

Milk Thistle:  Helps to filter the liver

KappArest:  This is a great anti-inflammatory supplement I have been taking through treatment.  It also has Alpha-Lipoic Acid in it which my doctor wanted me to start taking as part of my lower the liver enzyme strategy.  It is a great antioxidant but it is really good at preventing free radical damage to the neurological system.  Which is great for the Lyme brain!

PectaSol-C:  My doctor put this in the toxin binder category but this will be one of the pills that sticks around after Lyme treatment.  It is clinically proven to benefit cellular health, cardiovascular health, immune health, detoxification, and more.

Methyl Guard & 5-mthf (active B vitamins): I have the MTHFR gene mutation.  This can cause multiple health problems! In short, those who have it may have trouble eliminating toxins from the body.  Read about conditions and symptoms here. http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/ A lot of people have this and these two vitamins can change your life.

Epsom salt baths of course and listening to my body.

  Obviously no workouts if I'm tired and in pain

There is a lot of talk about detoxification and yes, it is a real thing. 

https://en.wikipedia.org/wiki/Detoxification

Lymies take our medicine to kill the bacteria living inside of us and when that bacteria dies we have to get it out through detoxing.  If not we can have terrible herxing reactions that can kill us. http://brewlifewithlyme.blogspot.com/2015/03/lets-talk-about-herxing.html

Those of us on antibiotics also need to detox from our medicine.  In order to detox we must have a functioning liver;  Hence the pain and discomfort when the liver is not working.

This post has taken me so long to finish but that is because I have been very, very busy.  Hiking, acting, camping, working on my new web page, kicking booties, and so much more.  I am getting myself into tons of new adventures this summer!  I see my doctor tomorrow and I want these buggers gone!

Made it to the top of Heliotrope Ridge to camp!

New acting reel!  All of these things were filmed while living with late stage Lyme disease.  Some bring back very painful memories.

Thanks for reading!

Slow it Down Babe, You're not Better Yet

It's May and that means it's Lyme disease awareness month.  One of the things I want to get across the most this year, is that ticks are in all states and they are in Bellingham, WA.  How do I know that they are in the place I reside? For one, there's this thing called migration.  Birds and other animals migrate and they bring along things like ticks with them.  So this isn't just an East Coast thing anymore.

This makes me feel so gross inside

For two, I GOT BIT BY ONE 6 years ago in BELLINGHAM, WA and it has completely flipped my world upside down!

This is how it went down:

I developed a bulls eye rash on my stomach, just like the photo above.  I showed it to my then boyfriend, and the owner of the company I work for.  All three of us were clueless, so I threw some ointment on that bitch and watched it dissipate over the course of a week.  About a week or so after the rash I developed a flu that knocked me on my ass, so hard!  I have never felt anything like it before, nor do I ever want to again. That was the Lyme bacteria evading my central nervous system.  From that point on I photographed evidence of my body, mind, and quality of life degrading.  This is also where I turned from a "yes" person to a "no" person and spent most my days trying to figure out what was wrong with me.

Just a few to give you an idea : /

Ugh, do I replay that rash in my mind over and over and wish somebody, somewhere taught me about Lyme disease?  NO, the past is the past and there is nothing I can do to change it, nor is there a way to rid myself of this disease.  All I can do is try to educate others so they do not have to endure what I have endured, and take away the positives from this disease. I'm not sorry if I bug you with my Lyme disease posts.  Read them, learn from them and educate others because the people around here, where I live, are clueless as to what lurk in their own backyards.  How do I know this?  Because this is what I hear:

"I didn't know there are ticks out here"
"My vet says I don't have to worry about ticks on my dog here"
"No, there's not Lyme here?"
"You got it here?!"
"I'm sorry, but I don't know much or anything about Lyme really"
From my own doctors:
"No, it can't be Lyme"
"Did you ever think that any of your symptoms are all unrelated?"
"Lyme doesn't happen here"
"You can put Lyme on the back burner, I think it's a false positive"
"Lyme?  What, no it's not Lyme"
"Lets just have you try this medication first"  (Steroids)

 I'll never forget this one, "What's a healthy girl like you doing here?"  At my sickest, this is what I heard from a new doctor when I came to plead for a Lyme disease test.  He wrote me off before I even opened my mouth!  And why?  Because how I look externally?  To me I looked sick as hell because I had seen a "before Lyme Becky."

I decided to venture out to the place where I got bit.  My old neighborhood and my backyard.  Every Spring they used to mow the fields down making it really easy to walk through.  I guess it's good that they haven't mowed because it would take a crazy person to walk through that mess.

The ironic thing about this photo, is that the building you see off in the distance, is a hospital.  It is the exact building that I heard some of the remarks above,  from doctors about Lyme disease.  It's the first place I went when I figured out I had Lyme and I actually thought that I could finally get help after 4 years of advocating and fighting for answers that nobody could give me.  Boy was wrong.  Lyme and ticks are sitting in their backyard and they are telling me I'm crazy!  Pretty scary.

Above is the view of the condos where I lived.  The grass is so overgrown that you cannot even see the small trails I used to walk my girl on.

Here is the start of one of the trails leading into tickville.  I was in flipflops and that was as close to the grass as I was getting.  I met a lil buddy and of course warned his mom about ticks!  This is Dr Pepper, he's been running around that neck of the woods since I lived there.

I have assumed that my sweet, pumpkin, sugar, butt, hunny pants of a dog that I don't have anymore brought the tick inside my home, on her.

Here she is

I used to think that those tiny lil trails were the perfect spot to walk my pumpky, but I know differently now. Guys, don't do that.  Don't go walking near or in tall grasses, just don't.

If I got bit by a tick that was infected with Lyme disease and co-infections, in a city that nobody thinks has Lyme or ticks, 6 years ago, it's a fucking epidemic!  Anybody can get Lyme anywhere.  Be afraid because this disease takes away every single part of your body and your personality.  There is no cure, your normal becomes extremely different than the normal you used to have and that's just something you have to deal with.
There is treatment and things can improve, for most people but that's if you...

1.  Get properly diagnosed  Hahahaaaaaaaaaaaaaaaaaaaaaaa Good luck. I had to research and diagnose myself.  Doctors will not even say the word Lyme and now it's become a fad, because the celebrities are coming out to raise awareness.  The tests are inaccurate.  You must go through IGeneX lab testing in CA and find a Lyme Literate doctor through http://www.ilads.org/

2.   Can somehow muster up the funds to get treatment. The CDC does not believe chronic Lyme exists so we pay out of pocket if we want a life back.  I've paid over $20,000 in the year and a half of treatment.  LL doctors risk loosing their medical licenses to help us, so they do not work with insurance companies.

3.  Get "lucky."  That's what my doctor says. Because there is very little understanding of Lyme disease, it's basically a guessing game on how to treat it.  There are very little studies and very small amount of funds going into the research of Lyme disease.  People don't just get Lyme, they get co-infections of Lyme, that can make treatment very challenging.  As far as I know I also have Bartonella, it's what has been attacking my eyes.
https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/

Some updated treatment news:
My treatment stopped.  My lever enzymes went through the roof and I have not been on any antibiotics for two weeks.  I have to wait for the enzymes to go down before starting my treatment again.  I have been on antibiotics for a year and half and I am scared as shit.  I am scared that the bugs inside me will flourish.  I am scared to death that some of my symptoms will come back and I will feel as I did 2 years ago.  I'm scared that this is going to be the roller coaster of my life.  On treatment, off treatment.

My doctor also told me to, "cool it mother"  Violet Beauregarde style.  I've been going a bit too hard, if you read my last blog post you can see why.  I'm not ready for that intense of exercise and she's right. It's just hard to hold back when you are starting to feel better after 6 years of hell.  I'm not ready for a lot of stuff yet and that's ok.  The last thing I would want is to overdue it and have more setbacks.  So I'm lightening my load a bit ;)

Also,

My promise to myself is to not let fear of what can happen control my life. Because as of late, I feel good, near normal good.  Or maybe this is my new normal?

Here is my updated treatment video

Help raise awareness for Lyme disease and Take a Bite Out of Lyme

Thanks for reading!l

Flashing, Lights, Lights, Lights, Lights

Since switching up my meds and going through one year and 6 months of high therapeutic dosages of antibiotics for Neuroborreliosis Lyme disease, I can safely say I am a new person. 

http://www.lymediseaseaction.org.uk/about-lyme/neurology-psychiatry/

I'm not the same person I was 7 years ago and I will always miss her. But I'm a better version than her in many ways.  One of the things I'm most grateful for is to have at least 90% of my brain back.  Inflammation in the brain is very serious and very scary.  Much of me has come back and she is bursting with energy, a sense of humor, smiles, and way less naps! Like I said in my last post, the side effects of my antibiotics are now starting to show more than my actual Lyme symptoms. For me this is great news!!!  It means remission is truly right around the corner. Although my eyes still bother me every single day,  muscle pain exists in my upper back and neck, and my brain can get a little foggy when I'm sleepy; everything has been drastically reduced or eliminated.  I am starting to feel very much the way a healthy person should feel!

Here is my original blog post showing most of my Lyme symptoms from fall of 2014.  Some symptoms are not on this list because it took for them to go away in order for me to realize they were Lyme related, such as anxiety and mood disorders.  It's amazing the changes and really hard to believe I have been in treatment for one year and 6 months.

http://brewlifewithlyme.blogspot.com/2014/10/okay-turns-out-im-not-so-well-ish.html
This is another oldy but goody
http://brewlifewithlyme.blogspot.com/2014/11/late-stage-lyme-and-why-i-am-one-badass.html
After going through this long of treatment I'm so much more of a bad-ass now.  I'll have to write another one when I'm finished with treatment.

I'm so happy to be getting better from this disease, I realize some people aren't as lucky and I'm very grateful.  I work hard for my health and I know that's a significant reason why I am getting better.  Although, this is something that will stick with me forever, it's not something that's going to control me and kill me any longer.

Sooooooo what have I been up to now that I am feeling better?

Of course taking care of myself is still my first priority, but what else?  

1)  Working out!  I have set some new goals for myself.  My body has changed drastically from my Lyme disease and hypothyroidism, caused by Lyme.  Quite frankly I'm tired of feeling uncomfortable in my body. I really want to make some long term changes now that my body is FINALLY responding to exercise.  I'm about 20% body fat and I'd like to be in the teens.
I have been doing 3-4 full body, very intense circuit workouts a week; this is my favorite kind of workout.  I also incorporate 3-4 longer, easier bouts of cardio on the step mill, ladder, bike, or treadmill I also work in a muscle group or a two a day.  I give myself one active rest day a week and do abs 4 days a week.  Muscle pain was one of my most severe Lyme symptoms so it's absolutely fantastic that I can workout like this and not feel extreme pain, soreness and fatigue on a day to day basis.  I still avoid any rowing motion and anything that activates my traps, upper back and neck.
It feels great to be able to workout at the level I have been.  It's been 6 years!  Just a year ago all I could do was 20 minutes of cardio!  I'm starting to see some results but I'm not stopping until I reach my goals.
I am not the kind of person who posts half naked photos of themselves on the internet for attention, the only reason I am doing this is to motivate others reading, especially for my Lyme warriors out there.  There was a time when I thought I was dying and lost nearly all my muscle mass and now I'm out there making lil bits of progress everyday. There are times I don't feel like working out, and on those days I remind myself that it makes me forget about my eye pain for a lil while, and I do it.  Hey whatever motivates ya!

Don't stop get it get it

2)  Eating, cooking, more eating and more cooking!  I food prep 2 days a week, Sundays and Wednesdays or Thursdays.  I have also really cleaned up my diet.  I get a little stubborn sometimes because I have already given up multiple food groups for my health and that makes it hard to give up even more.   The remaining few food items that I have to give up is quite the challenge for me.  Examples of my bad food would be something like corn chips and dark chocolate.
I decided to do a local veggie delivery service.  Every other week I get a tub full of different kinds of vegetables.   It's great because it gives my diet variety and it's helping to bring the spark back and make cooking exciting again.
https://www.dandelionorganic.com/box-prices
I eat 3 meals a day and usually 3 snack meals a day.  I've calculated all my macro goals and track everything I consume on a daily basis.  I weigh my food and usually consume protein and veggies.  My snacks are pea protein shakes, berries, and kombutcha is now considered a treat for me. And nooooo this does not control my life, there are cheat moments and they are filled with my local co-ops Tony Roma bars!  Sooo damn delicious.

Foooooooooooooooooooooooooooood

3)  Enjoying the beautiful Pacific Northwest weather we have been having!  I am happy to announce that I went on my first hike since 2014!  I didn't feel an ounce of Lyme pain.  My past hikes leading up to my diagnosis of Lyme had usually resulted in pain and lots of tears.  I cried because I literally felt like I was dying while hiking and it was frustrating to not know why.  I've also continued my walks outdoors. My bike was stolen a few years back or would have been biking!  And I'm fully confident that I will be hopping on my skateboard and roller blades this summer.  Even pondering running.
Summer of 2012-2014 I could not be in a car with the windows down nor ride my bike without my throat swelling.  My allergies were so bad going outdoors was extremely painful, my eyes always felt like they had little rocks in them, making it hard to concentrate on anything else.  I'm lucky to be able to tolerate the outdoors again!

Woot woot!

4)  Planning a return to school to get my Bachelors!  I currently have an associates degree and had to stop school from my Lyme brain and fatigue.  I couldn't focus, read, and sit to study without feeling immense pain. When you have Lyme disease everything halts, including school for most.  My life went on the back burner for 6 years and I am soooo over it. I'm ready to to challenge my brain and get smarter!  I will be doing online classes through an accredited college to get my Bachelors in Public Health Services with a concentration in Public Health and Wellness....Hmmmmmmm sound similar to what I do now?

5)  Rediscovering value in myself!  Lyme took a lot away from me.  I was self conscious, full of anxiety, unable to reach my goals due to limitations. I felt slow, my brain was slow, I was sick and tired, living in pain. I lived day by day pretending to be normal; smiling to everyone, but crying in the shower.  The last six years my body was in survival mode, never really excelling or moving forward.

Looking back I do not know how I did it!

I continued to go to work with a smile on my face every single day, pushed through workouts, got through extremely difficult and challenging times only to come out on the other side healthier and smarter than before!

I have worked 14+ years as a personal trainer, completely lost my health, only to regain it, conquering bigger and better goals than ever before.  I am back working close to 40 hours a week and just got offered an amazing position from a company who values and respects my work experience.  I see the significance of my employment history and all of my accomplishments are really becoming obvious to me now.  I absolutely refuse to be taken advantage of or be taken for granted.

And though she be but little, she is fierce. -Shakespeare 

6)  Advocating, offering advice & motivating others!  This has to be the most important thing that I am doing right now.  It's what gets me up at 5 am in the morning and why I go to bed feeling like I accomplished something great during my day.  Witnessing my training clients break through mind and body barriers on a daily basis is fascinating. Even just seeing their spirit lifted after conquering a small goal such as finally being able to understand the concept of a hip hinge.
Other areas are my advocating.  I advocate for Lyme disease so that myself and my fellow Lymies can be treated like human beings, and get proper treatment that doesn't cost ridiculous amounts of money so that everybody can get better.  I advocate for women rights, having worked 14 years in a male dominated environment I know first hand what a mans club can feel like and I'm not down with it.
I enjoy informing others about health stuff!  I know more than anybody that a gene mutation can prohibit gains when working out and that your t3 needs to be checked!  I dedicate my life to inform, encourage, and educate others. Friends, clients, and family members ask for help and advice.  Fellow Lymies reach out from all over the country for questions and to thank me for sharing my story on my blog and You Tube channel.

https://www.youtube.com/user/roverbean1/videos

One of the things I love about the Lyme community is that everybody is willing to help you out, encourage you, and give you advice if you have questions.  I realize I have helped others all over this country but many people have helped and encouraged me along the way.  Thank

 You :)

GRRRRRRRRRRRRRRRRRRRRRRRR

7)  Taking all my supplements and doing things that support healing in my body!  Gotta keep taking my pills.  I will be forever taking lots of pills and I must say the practice has paid off, my gag reflex is nearly eliminated.  I'm also keeping up on blood work and all the other millions of doctor appointments.  You won't see me partying like a rock star anymore, I'm social and around, but my health and well being is far more important than my social status.

It's not odd to find lil piles of empty pill bottles lying around.

I don good.  Real good.

8)  Chillen with the homies and my "awesome, super sexy, part Canadian boy toy!"  Hey, he said it.  But I think he's so much more than that.  Developing real and lasting friendships. Having deep connections and lots of love.  I have always been a person who loves being around people.  Lyme stole that from me a few years back, I lost a lot of friends from breaking plans and had anxiety in public situations. But not anymore!  Hugs and snuggles fill me with joy and I'm not afraid to admit it. Sometimes I want to take a shower in love; wrap it around me and roll around like a dog in the grass! I'm excited for my old friends, the ones I have had in my life for years and years, and I'm excited for the people I have in my life now, and the ones I'm going to meet. I love and miss my family and wish they were closer.  My friends and family respect me, understand to some extent what's going on with me, never give me shit for my insane diet, and never judge me.  I love you for that!  Here's to friends, old and new, you know who you are!!
Keep it real homies and drive it like you stole it.

Thanks for reading,
Becky Smith

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.