Updated Treatment Video #20

Here is a spastic little video of what is going on with my current health situation.  I discuss what treatment is giving me the best benefits at the current moment.

Happy Holidays!

-Becky

3 Years of Lyme disease Treatment: 2 stories

Treatment goes 2 ways for me. 

 50% of the time I want to jump off a bridge and die and the other 50% dreams of turning this condition into my mission. I waiver to one side or the other based off my symptoms and how I'm treated by insurance companies mainly. Today, I have two stories to tell; one of hopelessness and the other of hope.

Let's get the shitty one out of the way first.

November 16th marks the 3rd year anniversary of starting Lyme disease treatment.  I'll never forget that date.  I forget birthdays, names, and what I was just about to say.  But never that date.  That was the date I had the power to finally after 4 years of being ill, misdiagnosed, ignored, and being told I was healthy despite knowing in my core that I wasn't, to do something about my illness.

Every anniversary of the start of Lyme treatment I want to write, "I'm better" and because I can't I find myself in a whirlwind of emotions, a puddle of tears, and a black hole of depression.  You can usually find me alone in my neighborhood bar making friends with the bartender and trying samples of anything I can drink that won't kill me.  Remember this is the shitty version... I'm over it.   Sick with Lyme since winter of 2009, four years undiagnosed, and three years in treatment.  I want it to be over.  I want to move on but unfortunately I can't yet.  Chronic Neuroborreliosis Lyme disease is a full time job.  The constant insurance battles, traveling to doctor appointments, multiple illnesses, supplements, medications, lack of energy, no foods to eat, the pain, the money spent, alternative treatments, faking being okay, everything...all while not well and all while working and trying to survive.

I want to be in school, I would like to be enjoying the new city I'm living in, meeting more people, doing more things.  I miss the old Becky.  I was social, busy, active and way less tired.  There are so many times I want to be living more but I am still confined and just getting by.  Since January I have been off antibiotics and I relapsed.  I have been treating my immune system and candida and at this point I am at 70% without the antibiotics.  I still struggle with my eyes, I'm exhausted, and in a lot of pain most days.  I have a very limited diet and I have developed too many food allergies to count on my fingers and toes.  There are some good days and my goal is still 100%.

There are multiple levels of hopelessness but another major factor comes from the medical system:

The CDC says I should be better by now.  In-fact, I was supposed to be better 2 years and 11 months ago.  HA, right.  Insurance companies completely deny chronic Lyme exists, despite the 230 studies done proving evidence of persistent Lyme bacteria.  We are still being told that Lyme bacteria does not linger after 2-4 weeks of antibiotics and that our remaining symptoms left after treatment are something called post Lyme disease syndrome.  The IDSA  will not admit that the bacteria persevere inside of our body after their recommended treatment dosage of 2-4 weeks of antibiotics.  The IDSA will not change their guidelines because they feel there isn't sufficient evidence of persistent bacteria in those sick with Lyme disease. Therefore, denying us proper medical treatment and insurance coverage.  It's a fucking joke.  The article below lists 230 peer reviewed studies that show evidence of persistent Lyme disease.
  http://norvect.no/230-peer-reviewed-studies-show-evidence-of-persistent-lyme-disease/

Anybody who knows anything about Borrelia Borgdorferi bacteria one of the species that cause Lyme or that of the Spirochete class of bacteria (the bacteria that causes Lyme disease) clearly knows it is a stealthy organism.  The corkscrew like bacteria worm their way into our tissues, and can affect any organ in our body.  The bacteria evade our immune system by changing into 3 forms, including living in bio-film and hiding in hard to reach cyst forms.  The bacteria wreck havoc on the host! It's quite obvious that the bacteria will persist after 2-4 weeks of antibiotics.  It's not rocket science, yet we are still arguing about it?! This link describes why our immune system gets wacky in more detail.

https://www.holtorfmed.com/lyme-disease-evade-immune-system/

I receive help from Ilads trained doctors going against the IDSA guidelines. These medical professionals believe the bacteria remain after 2-4 weeks of antibiotics and they are willing to risk their medical license to help chronic Lyme disease patients with long term treatment.

The good story:
I might not be as healthy as I'd like to be but I'm still killing it.

If giving up was something I did then eight years ago I would have ended up like most Americans with chronic illness; scooped up in the medical system, paying the salaries of doctors prescribing drugs rather than helping their patients, and giving all my money to the pharmaceutical companies trying to keep me sick. I would be heavily medicated, most likely on steroids, and would be treating Chronic Fatigue, Fibromyalgia, Rheumatoid Arthritis, and early onset Alzheimer's disease.

Although everyday my life is a challenge that nobody other Lyme disease suffers can fully understand I am grateful this November for the tenacity I have.  I make it known to insurance companies, doctors and anybody who wants to try fight me on it that I am not backing down.  I always win and I get what I want.  That is why I'm functioning at 70% right now and that's why I'll make to 100%.  I am currently in the process of taking this tenacity I have for my health and implementing it in my day to day life.  I have some goals set and some things to accomplish this next year. Please keep an eye on my Lyme disease advocacy page for emerging projects.

http://www.beckydsmith.com/lyme-disease-advocacy-1/

More good news is that last year around this time I took appropriate measures to make some changes with doctors based off my own instincts.  Turned out I was correct and since we have been discovering and treating other conditions that are helping to support my immune system; keeping me off antibiotics, and helping my body to be strong enough to fight this infection on my own.

Happy Thanksgiving and thank you for reading.

The neighborhood Turkeys

It's All Coming Back To Me

Dad found out today that he will be starting chemo again; this time for the 2 nodules behind his ribs, on his lungs.  I worked a 10 hour shift  standing in one spot on less than 5 hours of sleep.  I couldn't sleep because I spoke with my mom on the phone last night and I have to admit,  I've been pretty selfish lately.  I've been avoiding talking to my family on the phone because it stresses me out and gives me severe anxiety which disrupts my sleep for days.

My mom, dad, and sister live in Ohio and I've lived in Washington State for the past 10 years or so?? My mother and father have never come to visit.  I find myself lying to others when they ask about my family visiting because I'm too embarrassed to say that they haven't come to see me.  My sister visited once.  I don't hold it against my mom and dad for not coming out, life always seems to get in the way.   I definitely don't get back to Cleveland as often as I'd like strictly because all of my money is spent on my health and Lyme disease treatment.

My family is stressing me out because my sister married a man who ended up not being the man she thought she married.  It hurts to be so far away and to see her in such distress and unable to help her. Even though she's my older sister I always felt the need to protect her.  Heather is drop dead beautiful, really smart, and a stickler for cleanliness.  The nickname I gave her growing up was Miss America...because she was just that perfect.  I was the total opposite.  When we were kids she wouldn't let me walk on her bedroom floor barefoot because she hated feet and when I was older she always knew when I was at her house because the trail of crumbs I left behind.

 I headed home to Cleveland about 8 years ago to surprise my dad at his 60th birthday party; By the end of the weekend my sister had myself, my new boyfriend at the time Josh, and our immediate family eating  spaghetti outside on a chili October evening because she was at her crumb threshold! She was done cleaning up after the messy festivities the weekend brought.  After she had her girls things changed and the last time I was home visiting I didn't even have a funny crumb story to take with me when I left.   

Another reason I couldn't sleep was because I found out my sisters pug Olive got sick and has LYME DISEASE.  I was up all night with anxiety about how exposed my family is to this disease.  Weird anxiety surrounding ticks and Lyme happens more often than I'd like to admit.  My sister has two little girls and the thought of them getting ill makes me sick to my stomach.  I toss and I turn at night but can't keep what those tiny creatures can do to ones body and mind away.

Dad, the girls, and the newest edition, Hazel. 

Olive 

With all of this. All of this stuff going on.  One thing that is kind of at bay is my own horrible Lyme disease symptoms.   My current symptoms include:

-Sjorgrens symptoms of eye dryness, ear tubs getting clogged which results in clicking while I speak.
-Laryngitis like symptoms of wheezing while lying down and losing my voice slightly by having dryness in my throat.
-Sinusitis like symptoms.  Pressure in my sinuses, headaches, watery eyes.
-MY EYES.  Redness, swelling, pain.  The norm for the last 8 years.
-TMJ.  Clicking in my jaw.
-Exhaustion but I think that's because my life is insane.

All of these symptoms are Lyme related and all of them except my eye issues are pretty new to me.
It's all from the neck up, of course the hardest places to kill the Lyme bacteria.  The Lyme has come back enough to be troublesome and I will not know the next steps to take in my treatment plan until I speak with my doctor next week.

-I have to be careful of Mast Cell Activation Syndrome triggers.  I was having loads of headaches from Chiropractic adjustments or Sinusitis or new food allergies surfacing and due to the pain I needed to take Excedrin, Tylenol or Ibuprofen.  I discovered I can't metabolize Excedrin and Ibuprofen; they are a triggers for Mast Cell and give me muscle pain in my upper back.  These are things I have to constantly look out for!

Another thing I have to look out for are food allergies.  In the last few months I've developed new ones to peanuts and rice.  I haven't counted, but I'm reaching twenty some food allergies at this point.  It's insane and challenging.  Currently doing LDA injections so hopefully that will help.

Overall, things could be way worse.  My brain function is great so that's awesome!  My symptoms are sticking to the neck and up.  Which is good.  Not great and not over but getting there.  I can't be cured but I can be controlled and I'm getting things under control slowly but surely ;)

Everything I've done for myself and for others, it's all coming back to me.
This ones for the Lymies I'm so happy to help you.

Thank you for reading
-Becky

Universe

I dug this draft up from over a year ago, so some of the details are literally from over a year ago.  I'm not going to change it or edit it to current time so keep that in mind while reading.  I chose to finish it because of this sentence right here:  I haven't been feeling like a prime steak lately, the higher dosages of my meds are knocking me down to select, but it's to be expected.  Haha.  Now remember this draft was originally from over a year ago and it was January at the gym...

Living Life

With Lyme

I met with an interesting man the other day at my job. Jeff, a man about 60, who later ended up bringing me gallons and gallons of kangen water to help heal me.  It was awesome.  One of the things I enjoy most about my job as a personal trainer is that I get to meet with random gym goers throughout the week and listen to what's going on in their world.   As I've gotten older I've learned to shut up and actually listen to people.  We all have a unique story worth sharing and we each deserve to be listened to. Not interrupted because we have a similar experience that we deem relatable.  I believe anybody who comes through my life and connects with me on a level more than just bologna talk has a purpose for being there.  Stop talking and truly listen.  Connect.  Experiences come from connections they truly do.

Jeff began asking me personal questions so I felt it was okay to insert some personal information about myself.  I mentioned that I am an actress;  the golden globes were then talked about, which led him to mention a commencement speech that Jim Carey had addressed to recent graduates of MUM college. I hadn't watched it, and he suggested that I do so,

Later that day after a rainy, freezing walk at Lake Padden I got home and prepped some breakfast foods.  I haven't been feeling like a prime steak lately, the higher dosages of my meds are knocking me down to select, but it's to be expected.  Any change in medicine can make for a lethargic week or two. Very exhausted, I  snugged in my fluffy bed and You Tubed the Jim Carey speech.  The beginning started off slow, typical JC jokes but as he got going something clicked with me.  Earlier in the week I had a moment... I was taking a walk on the boardwalk, watching so many dogs go by.  I kept thinking to myself how I really really want a dog.  I lost my love with the end of a relationship.  Dizzy, a Rat Terror, ohh I mean Terrier...who Josh and I rescued.  Josh was the guy I dated for 7 years.  We broke up a few months into my Lyme disease treatment.  He's a tall, skinny, enthusiastic, skater/musician guy with more hobbies than the hairs on my head.  Josh has crooked teeth, crazy blonde hair, and a love for the little things in life.  Dizzy was the only one of twelve dogs tied up in her foster home.  We should've known upon arrival that she was going to be trouble.  Later, we should have known for sure when they helped her in our car and didn't bother with our money!  We had to remind them that we needed to pay for Gizzy (her pre-name change).  HA!  I think they were just ecstatic to see her gone after the year or so she had been in foster care.  Dizzy is a bundle of trouble, warmness, and love.  She helped me get through 4 very confusing, ill years of my life and I miss her beyond words.  I used to pretend she had all the same food allergies as me just so could have somebody to relate to.  The Worm.  Skwurm.

Thoughts of dogs triggered more thoughts such as, how I really need a job, one that pays the Lyme and the bills and allows me to have fun, maybe go on a vacation for once in my life.  All I could think about was, Why can't I?  Why can't I have what I want?  Why?! Why?! Why!

Watch this!  Then come back, things will make sense then I promise.

"You can fail at what you don't want so you might as well take a chance on doing what you love"

That very commencement speech had finished my thought process that I had on that boardwalk stroll.
Yes, I have an illness that zapped 8 years of my life.  Yes, I could have been long done with school and have a career I thought I wanted.  I'm not going to blame Lyme disease for not being where I want to be in life.  It's part of my story but I'm thinking those heads in that Jim Carey painting could be part of it.


Anyway,  Jim Carey talks a lot about the Universe, and so do I.

There was a moment a few years back I explained it in this post.
http://actorbeckysmith.blogspot.com/search?updated-min=2014-01-01T00:00:00-08:00&updated-max=2015-01-01T00:00:00-08:00&max-results=1

It was the moment I looked up at a billboard on my way to Pilates and asked myself, Why can't I be on a billboard, only a few months later to end up on a mother fucking billboard!

That moment the universe aligned for me.  There are more little miracles than I can count on my fingers.

Buildings should have been falling around me, or on me during the attack on 9/11 but I randomly had a doctors appointment set up for a procedure that day.  The exact time the first plane hit I should have been walking out of the World Trade Center headed to work.  I gave myself 15 minutes to get to work and I needed to be there at 9:00 am.  And trust me,  doctors appointments were not a routine occurrence back in the day.  I switched the years I took my Chemistry and Biology courses in high school and ended up meeting Spada, who helped me get to NYC at the fresh young age of 19.  Once in NY I had a conversation with one of my all time faves, Rachel.  Her roommate was dating Liev Schreiber at the time so celebrities were something we spoke of frequently.  While snacking on Italian treats and sipping coffee I articulated how I could care less of celebrities but one, and gushed how I would loooove to see ETHAN HAWKE.  Rachel and I said our good byes and I walked out of the cafe with the sweetest miniature tiramisu cakes I used to be able to eat.  The cafe was located right across the street from one of my acting schools I studied at, Lee Strasberg Theatre Institute.  I continued straight down 15th street towards Union Square. Took a right and who do I see, ETHAN FUCKING HAWKE with his son on his shoulders walking down Union Square.  We didn't have cell phones that took pictures back then, it was the early 2000's. Life wasn't about asses on Instagram, lots of likes, and making your life seem like a dream.  We all just lived with our personalities and whatever we felt like doing...not for the sake of the photograph, likes, or the attention.

Things happen, they just do. 

It's a weird feeling when it happens.  It feels crazy!  It's you and the universe in that moment.  It's hard to explain and others may question your truth.  But you know and you're not looking for approval.  Keep asking for those moments because they are the best when you get them!

 AND

 Like Jim says, Risk Being Seen In All Your Glory.
I love that. 

Today, now in current time, Why can't I? gets me through my day.  It gives me super powers.

Some Lyme stuff below.

With Much Love, Becky

P.S.  I got signed with an acting agency this week. :) :) :) :)

Did Somebody Just Say Cake? Seriously, I'm hungry.

Okay I'm back.

My more positive than not positive self.

I wanted to crawl in a hole and never come out after getting off 2+ years of antibiotics and relapsing right away. Yet again, the only thing that was left for me to do was to just keep going.  My need for normalcy and relief enable me to keep searching for answers to my symptoms even when it seems like I'm in the boxing ring with the heavy weight champion of the world.

I have a complete different perspective of this disease strictly because of what happened to me over the course of the last few months.  It is truly amazing in a good and bad and wonderful way.  The reason for my change of perspective is because of my Canadian doctor.  I see or talk on the phone with him for 15 min every 5 weeks or so.  He makes treatment affordable for me and has changed the way I view this disease. He treats differently.  Had I gone back to my Seattle doctor after relapsing I would have gotten pumped right back up on dinosaur amounts of antibiotics and would never have gotten the answers I now have. Ohhhhhhh it's all so unbelievably complex I could throw something. How and if it falls into place is a mysterious and amazing thing.  All I can say, if you are still fighting is to keep asking yourself questions, and never give up on finding the answers. I'll say that until I die.  Question every single symptom.  Put yourself out there in the universe.  If I had not chosen to do a short 30 second video for a fellow Lymie I would never have gotten in contact with Nicole, another Lymie who introduced me to my new doctor.  She happened to see me on a Lyme video floating around facebook and realized we were neighbors in the same city.  I'd be so screwed had that moment never happened.  I was financially tapped and could not return to my Seattle doctor regardless.

Here's that video I mentioned

I'll give you an update further along in this blog on my treatment but I want to get going on some of my accomplishments over the last few months because sometimes I forget to look at how far I've come! Even though Lyme symptoms crept in hard about a month and half ago I am functioning the best I have in 8 years.  In November of 2014 I was just trying to survive.  Today I am beginning to flourish and I can feel it.

For Shania Twain life is finally about to get good after getting treatment for Lyme disease...Maybe mine is too?

1.

First off, I got a new job!  My new job is in health of course.  It's challenging, there are looooong hours and I've learned LOTS of new information but I've caught on and I'm surviving.  It was even acknowledged in a meeting how fast I picked up on things and how grateful the company is for that. Three years ago I was struggling to speak, I could not read, and just my cognitive symptoms alone plagued me enough to make me question if I would ever be able to function in the world let alone take on new responsibilities.  Right up to the day I took this position I feared my bodies ability to pull it off.  And I did it!  

  So. much. progress.

2.

I left everything I knew over the last 10 years and moved to a new city.  It's fabulous and new and larger than the last one.  I'm still getting broken in, but I love it so far.

3.

The girl who never wanted to get married and feared she might never find love again found love in the most unexpected place and got engaged.  I remember fearing nobody would love me again after my last long term relationship ended. I was sick and tired and 7 years older. I was 3 months into treatment and remember thinking, why would anybody want to get involved with this, looking down at my insanely symptomatic body.  In hindsight, there has been nothing yet more monumental than being a single women, defender of your own body.  You become super human and super empowered.

Sickness opens your eyes, the struggle helps to identify what to see, and the strength emanates; Allowing you freedom.

4.

I'm still going.  I am still fighting for my health after almost 8 years.  With so many ups and downs.  With so many medical bills and pills.  I refuse to stop until I get where I want to be.

The perseverance will pay off.

5.

Lastly and thankfully, I can be 100% confident that my muscle pain in my neck and back was due to MCAS and all the triggers that came with it.  Wow, to date that was the most challenging symptom to figure out for myself and doctors.  Since upping my dosage of Cromolyn Sodium I have been PAIN FREE in the neck and upper back area and it happened immediately.  That pain interrupted nearly every day of my life for 8 years.  There were so many days where it was all I could think about because it was always just there, even in my nightmares.

Quick health recap:

My getting diagnosed with MCAS has changed my life. After my relapse I went to speak to my LL in person.  He calmly suggested we up the dosage of Cromolyn Sodium and wait to see what happens for the next two months during my typical flair weeks prior to my menstrual cycle. WAIT TO SEE?!  My first thought was panic as my last LL doctor would have loaded me up on antibiotics.  That day I decided I had no other option than to trust him and let him be my doctor. After having been my own doctor for all those years it's something I struggle with; Lack of trust in the medical field, even the special ones who treat Lyme, but who can blame me?  I'll know more about the status of my immune system soon but so far there has been a turn for the better and his plan just may be panning out for me.

Lets enjoy our good days.

Thanks for reading
P.S.  I got an amazing offer, a Lyme disease patients dream.  Something that was meant for me.  Fate.  I can't talk about it yet, maybe next time ;)

-Becky

Lyme Disease Prevention: What You Can Do to Protect Yourself and Your Children

People are talking about Lyme disease this year.  Not just the Lyme community that I connect with on a daily basis. These are normal, healthy, people and they are talking about Lyme.  I am even sensing some fear, so this is great!  More awareness which will hopefully mean more progress for those suffering and better tests that accurately diagnose.  Better treatments?  Maybe a cure!

We are rounding into the end of Lyme disease awareness month and this year I wanted to write a post about prevention.  This is a topic that many of us still need help on, including myself!  So as I am writing this I am also learning at the same time.  I am getting my information from the most accurate sources within the Lyme community.

My main basis of prevention right now is fear.  I am fearful to walk in grass, short or tall.  On sidewalks and trails I walk in the middle as often as I can.  I won't sit in the grass or on rocks.  I wake up in a panic sometimes because there is a crack in my bedroom door that leads outside, I fear ticks might get in and find me because I see deer in my backyard sometimes.

There are 4!

I am fearful of most bugs and animals that would carry ticks on them. When I see children and adults playing in fields and grass my mind immediately goes to how messed up their life would become from one tick bite. I have yet to see a tick in person and when I did years ago I wasn't even sure what it was, but if I did see one I might have a heart attack.  This fear doesn't prevent me from going outdoors and if I have to walk through short grass I will but I'll make sure to check my shoes and legs for ticks, tiny and large.

I don't think that this is too much fear for me to live with though... Nearly 8 years of my life have been consumed, taken over, and some lost from a single tick bite in a state where Lyme disease wasn't supposed to exist.  Not a day goes by that I am not plagued with some form of Lyme symptoms or reminded of what I have lost from this disease. I am contacted on a daily basis from newly diagnosed Lyme patients and the cases of Lyme and misdiagnosis are getting out of control.

So let's get on with it and talk about prevention.  What can you do to protect yourself and your children from destroying the rest of their life.

1.  Educate yourself on LYME.  (NOT LYMES)  There is so much wrong information out there about Lyme disease.  Tons and tons of wrong information.  Even from websites you think you may trust such as, webMD and the CDC.  I get my Lyme information from:  https://www.lymedisease.org/  Also from doctors who study Lyme disease two of them being:
Dr.Richrd Horowitz:
http://lymeconnection.org/news_publications/meet_the_lyme_disease_experts.html/title/dr-richard-horowitz
Dr. Daniel Cameron:  http://danielcameronmd.com/ and so should you.
For accurate information on ticks, prevention, treatment, co-infections, the "big controversy" go to this website.  Click below for some basic information on Lyme:

https://www.lymedisease.org/lyme-basics/lyme-disease/about-lyme/

Know that ticks, Lyme, and co-infections are in every state and many, many Lyme cases go undocumented because they were not reported.  I am an unreported case in the state of Washington because my ELISA Lyme test was negative.  I was also bit by a tick in Bellingham, WA in 2009 and told there was no Lyme disease or ticks in Washington by many doctors.  Many Naturopathic doctors also had little to no knowledge on Lyme disease, one lied to me.  Most of these ND's graduated from the prestigious Bastyr University in Seattle.  One in particular did not even know what Lyme disease was!  No joke.  So do not go by those silly CDC maps, clueless docs, and ELISA tests anymore.

They are bullshit. Go by this map, Lyme literate doctors, and IgeneX Lyme testing.  Doctors will most likely try to tell you that you do not have Lyme and that it is not in your state but they are wrong, uneducated and probably being paid to treat you with medicine for your newly diagnosed MS.  

I stole this from a fellow Lymie over at Lyme Warrior.  It's the most accurate I've seen.

Do not get your Lyme information from the CDC ( I should mention they follow regulations by the IDSA and their guidelines for treatment haven't been changed since 2006):  These institutions believe that Lyme disease is curable and treated in 3 months.  They are the reason why people like myself go bankrupt and die. They are also the reason why Lyme disease is typically not covered by insurance.  They are the reason why Lyme literate doctors, (the ones who actually help us) do not work with insurance companies.  LL doctors risk losing  their medical license because they prescribe antibiotics for Lyme longer than what is recommended by the CDC and save lives doing so.  The CDC and the IDSA is corrupt.  If you don't know this by now, you should.

If you want CORRECT LYME INFORMATION go to:  https://www.lymedisease.org/

This is where you can also find a Lyme literate doctor in your area if you want to be tested for Lyme using one of the most accurate tests.  We should all know by now that the ELISA Lyme test that you would get at your local doctor office will most likely come back negative.  Get tested through Igenex Lab with a trusted LL doctor.

At this point Lyme has been linked to ALS, Dementia, MS, Autoimmune conditions, Fibromyalgia, Chronic fatigue and many, many others.  There is scientific evidence out there that proves this and quite frankly I'm sick of getting into arguments over this topic.  I consider myself a lucky one because I told doctors to fuck off when they informed me I had some of the conditions noted above.  I believe those illnesses are symptoms of something else.  I'm not necessarily stating that they always end up being Lyme but regaurdless, if you are smart you'll find out what is actually causing those symptoms. Do your research, it's out there.  If you get diagnosed with anything that is often confused with Lyme you absolutely must rule Lyme out first through a trusted LL doctor or you risk losing so much more.

2)  Tick Removal

I have seen tick information and removal floating around that is wrong and scares me. This is how you remove a tick:  https://www.lymedisease.org/lyme-basics/ticks/tick-removal/  

All you need is tweezers.  No fancy twisting tools, just tweezers from the bathroom.  Grip as close to the skin and pull directly upwards.  It's done this way because the reverse barbs on the mouth of the tick get stuck easily in the skin.  If the mouth is left in your skin there is a higher infection risk.

3)  What to do after you notice a tick bite and remove it correctly?

This is the most important step you take in preventing Lyme disease and co-infections.  I would not joke around and waste time posting photos to social media.  Spread awareness later, but go get help now.  If anyone in my family gets a tick bite they are heading to a Lyme literate doctor in their area and getting treated for Lyme and co-infections for whatever amount of time suggested by their LL.  No test required.  I advise you all to do this.  Lyme disease and co-infections can diminish your quality of life greatly. Do not take a tick bite lightly.  Do not wait for symptoms or a bulls-eye rash because by then it could be too late and you do not always get a rash.  I can tell you first hand Lyme disease and co-infections are a living nightmare and you do not want what I have.  Don't risk it.  Also, take note that the information floating around that a tick needs to be attached for 24 hours before it transmits infection is bull sheeeeiit.  Again, KNOW THE CORRECT FACTS.

4)  Know the co-infections and other related conditions, such as mold toxicity and POTS.

It is highly unlikely that the tick that bites you is only carrying Lyme disease.  When we spread awareness we tend to just use the term "Lyme"  but for those of us diagnosed with Lyme we are most likely battling more than one infection.  For some it's the co-infections that are keeping us ill.  You can have multiple co-infections that are just as hard to treat as Lyme disease, if not harder.  For example, Bartonella is commonly called Cat Scratch disease it is a co-infection of Lyme but you can also get it from cat scratches or bites, ticks, sand flies, and body lice. Recent studies suggest that it can be passed from mother to child through perinatal transmission just like Lyme disease.  It is insanely common and insanely hard to treat but yet you never hear about it. Pretty scary.  https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/  

We also tend to use the term "Lyme" for all of our other infections that can range anywhere from Epstein- Barr to mold toxicity.  Like I have said a million times you never just get Lyme, your system crashes in the late stages and you get a million illnesses and diseases.  

Now the fun stuff!

5)  Protect yo-self and yo-kids.

I am buying my nieces in Ohio this get up.  Dr. Frid is the reason why you have been seeing information in magazines this year about Lyme disease.  She is a huge advocate for those of us suffering.  She created kids repellent clothing.  Here is the link to children's mesh clothing to protect them from ticks while playing outdoors.  https://www.elenafridmd.com/insectrepellentclothing

I"ll most likely be wearing someting like this for gardening, hiking, camping, fishing, anything outdoors really.

Kidding, but not a bad idea...

6)  Tick Repellent

I am just as fearful of chemicals as I am ticks so I prefer the more natural essential oil route to keep the ticks off me.  Some use those listed below on clothing and skin.  But do research and know what you are putting on your children and yourself.
DEET:  http://npic.orst.edu/factsheets/DEETgen.html
Picaridin:  http://npic.orst.edu/factsheets/PicaridinGen.html
Permethrin:  http://npic.orst.edu/factsheets/PermGen.html#whatis
I use the item below.  Although I just read eucalyptus oil is the most effective natural repellent, which this does not have. 

 

7)  What else to do for prevention??

I grabbed most my information from this page  https://www.lymedisease.org/lyme-basics/ticks/personal-protection/

-Stay away from high risk areas such as:  leaves, brush, grass and fields.

-Dress correctly:  Wear white, tuck pants in socks, spray your clothes and footwear in repellent.

-Use your repellent!

-Check for ticks after being outdoors and shower.

-Heat kills ticks so you can toss clothes in the dryer after being outdoors.

There is also a tick management handbook you can find here:  https://www.lymedisease.org/lyme-basics/ticks/landscape/  It provides information on how to prepare your landscape and chemical control  for your yard.

8) Lastly, the most important:  PETS!

As much as I hate to say it I believe our furry fuzzballs are bringing ticks indoors.  That is how I got Lyme disease.  If you have cats and dogs going outdoors they will have to be treated with some sort of protection against ticks.  Yes, there are ticks in your backyard.  They were in mine.  I really believe this is one of the main reasons there are so many Lyme disease cases.  It kills me now to think about but I used to see little black dots on Dizzy (a dog I once owned) all the time.  I would ask my then boyfriend what the hell they were;  I had mentioned ticks a few times and was disregarded.  Well I realize now that they were ticks, so gross!  Talk to your Vet about how you can prevent your pets from ticks and make sure to check for ticks after being outdoors.  If your Vet tells you that you do not need to worry about ticks and Lyme where you live (very common to hear in the Pacific Northwest)  Educate their asses and use me as an example!

Take the Lyme disease challenge  https://www.lymedisease.org/lyme-basics/ticks/landscape/

Or buy cute tanks and t's to spread awareness!

Lyme disease is garbage do what you can to avoid it.

I was caught staging my Take a Bite Out of Lyme disease photo

Educate yourself on ticks.  I wish I knew then what I know now.  Also, take the precautions.  You know them now so you have no excuses.

Be careful out there!

Becky

The Biggest Mistake I've Made

In my quest to regain my health throughout my Lyme disease treatment.

I remember finally getting my diagnosis in November of 2014, it had been four years after becoming ill.  I had a list of symptoms you can view here:  http://brewlifewithlyme.blogspot.com/2014/10/okay-turns-out-im-not-so-well-ish.html  and a mind frame that once I killed the bacteria in me, I would be home free!  I even thought there was a cure.  Everybody has there own way of dealing with their diagnosis and so do the people close to them.  My way of dealing was to imagine those mother fuckers dying off one by one and envisioning myself moving on with my life.  So that's what I set out to do.  I found an aggressive Lyme literate doctor in Seattle who gave me massive amounts of abx in quantities that 200 pound men would take, and I asked for more.

I'm writing this because I wish I was told this from other Lymies when I began treatment.

My improvements from treatment thus far are drastic. Unfortunately, symptoms of Lyme or a co-infection are returning after roughly 4 months of getting off antibiotics.  I'll get to that.  But the number one mistake I made was to assume that everything going on in my body was because of the Lyme disease.  In a sense it was.  Without Lyme I would never have had these other diseases and illnesses.  From the beginning I assumed that with Lyme treatment all my symptoms would go away but what I discovered is that Lyme disease triggered a cascade of diseases and issues in my body that were no longer caused from the actual Lyme bacteria. These things then triggered even more symptoms that were unrelated to Lyme but easily confused with Lyme.  After going undiagnosed for 4 years many many issues arise for the genetically predisposed population of Lyme disease suffers.  For some, Lyme might be the only thing that is going on, but like I've said in the past that's highly unlikely.  If you can get to the point where you have full blown Lyme disease, there are a host of likely genetic factors taking place making things much worse for you.  It is all very very complex and there are very few medical professionals out there who truly understand it all.
Myself and my previous LLMD wasted a lot of time thinking all my symptoms were Lyme related only for me to end up finding out 2 years into treatment that I had other major issues effecting my immune system, body, and eyes. Those issues absolutely need to be diagnosed and treated in order to get well.

Part of the reality is that I didn't think I was a complex Lyme case from the beginning.  I wanted to take my meds, regain my health and share my journey in the most positive way I could. I also wanted to give those suffering hope, and enlighten others who may not know the effects of a single tick bite. I feel as though I've let you down but I also realize I'm writing my own story here.  I've had to sit back and take an honest look at my health over the last few months and I am not doing well.  I'm functioning in the world but there is not an hour in a day that goes by that a symptom isn't ailing me.  I'm still fighting for normality though and I truly know I'll get there, it just takes time.  Most with Lyme realize this but I was too far in denial to believe or admit to myself how sick I really was and the repercussion of that is now clear to me.  As an actress I started to believe my own portrayals of the healthy person I tried to project to the world.

I urge those of you beginning treatment to find an LLMD willing to look into all aspects of this illness, or find multiple doctors to treat each individual issue you may have.  It is the only way to get better from this disease.  I understand that this can be a challenge due to finances, travel distance to a competent LLMD, and the sheer fact that regular doctors have minimal knowledge on the topic.  Most docs do not understand what's going on in the bodies of Lyme patients; nor are they even willing to believe Lyme exists or is the cause of anything.  It's truly sad and damaging to the spirit but the one way I have found success in this area, is to talk.  I was able to find some people here in my new city willing to help out because I shared my experience and was referred around.  Keep sharing your experiences and stories it opens up doors and there are pharmacists, doctors, and ordinary people out there who can and will help you or lead you to someone who will.

Here's what's new with me:

I recently moved far away from my new LLMD in Canada and my amazing primary care doctor, (at a normal medical facility) who rewrites my prescriptions in order for them to be filled in the states.  This has been somewhat of a challenge for me but both docs are continuing to help out over email, Skype, and phone calls.  This does not feel safe for me right now but it is my only option at the time.

A New Disease!

I say this not with excitement

Finally after 8 years I have been diagnosed with the bubble disease.  Mast cell activation syndrome, this disease was brought on from Lyme and has a genetic component for me. You may have read about those rare people that can't leave their house due to allergies, my condition is similar.   Mcas or Mastocytosis is a rare disorder characterized by abnormal accumulations of mast cells in the skin, bone marrow, and internal organs. Mcas in myself seems to be triggered by mold exposure, chemicals, certain abx, and a number of food items.  I also have reason to believe it is triggered from something within my body.  Maybe Lyme endotoxins, yeast, or hormones.

In order to suppress the constant state of allergic response in my body I have recently begun taking:
Cromolyn Sodium in liquid form 4x a day to prevent allergic reactions and stabilize my mast cells.
Loratadine 10mg 2x a day
Zantac 1x a day.
These drugs will block all the H1 and H2 receptors and stabilize mast cells.  I have been on them for about 2 weeks and the difference is truly remarkable.
Being diagnosed with mcas is a huge step towards a positive direction in my health.  Now that my immune system is getting support, it can hopefully function better for me.
LDA injections every 2-3 months to help reduce allergens.

One of the best sources of information on mcas is here:  http://www.jillcarnahan.com/2016/10/31/mast-cell-activation-syndrome-mcas-when-histamine-goes-haywire/
Please read up if allergies and mold toxicity have been a large part of your illness or if you're a non Lymie but have chemical sensitivities or major allergens.  This disease is a lot less rare than medical establishments lead you to believe.

Lyme  Symptoms Are Back

I have been off abx for about 4 months and by the fourth month I have begun to demonstrate a multitude of symptoms that could be Lyme disease or a co-infection.
Symptoms are much stronger and intolerable the week before my period and more tolerable or gone all the other weeks.  My eyes continue to bother me daily.  Symptoms that have come back in the correct order:

--Aching knees in the evening and sometimes throughout the day.
--Burning, red eyes.  My eyes are always messed up, but they stay consecutively red for the week before my period.  They are in no more pain than usual.
--Muscle twitches in any and every muscle randomly.  Not twitches that keep twitching in the same spot.  They migrate and are very minor and painless, just annoying.
--The dreaded neurological symptoms.  Losing my train of thought, marbles in my mouth or messing up words.  Saying the wrong word.  
--It feels like things are running around under my skin.  Yeah I know, sounds weird.  Only way I can describe it.  Also heat under my skin.
--Lastly, huge lymph nodes around my neck.  A sure sign an infection is active and boy can I feel this one.  I'm pretty much knocked on my ass.

I'm not happy about this but unfortunately this is the reality of Lyme disease.  It's incurable and my immune system is obviously not ready to fight it on it's own. I still have hope after 8 years of being ill that one day it will.

Mycotoxin Illness:

I am still being treated for mold illness, although I'm off Cholestyramine.  The thyroid interruption and weight gain is not worth it right now.  I have been getting some exposure, as many buildings and homes have hidden mold.  I have taken several job offers in my new city only to quit a few days later due to the building making me sick.  It's probably the most insane thing going on in my life right now and in order for me to not lose my mind over it I remind myself that I'm really lucky to have figured this all out. There are a lot of people suffering from mold illness who will never understand it or get the help they need.  Hidden mold is my superpower.
Currently taking charcoal and rice bran for binding.

My plan: 

My LLMD wants to wait three more weeks before we talk because he says that my symptoms can tell him a lot.  I agree.  We can determine if this is Lyme or a co-infection and figure out what treatment will be needed. I will be visiting him in person in a week.

My Rant:

The problem I have here is that most people that have huge lymph nodes and a flu-like feeling get to go to a doctor, get meds, and stay home from work because they are ill and their bodies are trying to fight an infection.  But not me.  I have to put a pretend smile on, act like I'm fine, and go to work.  This is what having a chronic illness is.  I ponder if I should change my name in case I'm googled by future employers.  But you know what, I chose awareness and I get to make change happen and do something I'm passionate about in my spare time.   And that is fucking awesome!

My YouTube update video!

Never let YouTube help you with a diagnosis.

Thanks for reading!  Don't hesitate to contact with questions.

BECKY

Part 2 of Treatment & Part 2 of Life

I'm moving.  

Bellingham, you kicked my ass.  I would have thought moving to NYC as a 19 year old would be one of the hardest times of my life but it doesn't even touch my time here in Bellingham.  10 years in the ham, 7 years with Lyme disease and mold toxicity.  Nothing has made me find my strengths and stare my weaknesses in the eyes more than these last 7 years.  I want to hate Bellingham;  it made me sick.  But I don't I'm proud of who I have become here and I am very excited for the future.  Without Lyme I wouldn't want the things I want now.  I'm so enthusiastic for my next adventure and I'm looking at this move as a step away from a transfixed location.  It's time for me to let go of the many forms of pain that live here and find new 

beginnings.

Mold Treatment update:

When I began the treatment for mold toxicity life was hell.  I questioned everything I have done over the last two + years of treatment!  I postulated my move out of my apartment in January,  my improvements, my lack thereof improvements. EVERYTHING.  I hurt.  My muscles hurt, my eyes stung, I was fatigued and so incessantly needed a good day.  I looked at my boyfriend, shook my head, and said,  "I don't know how much more of this I can take.  I need a good day."

I didn't know why I felt so crappy and I wondered if I could possibly herx from Cholestyramine.  I began to look more into the usage of it and what I read is that it is not so much of a herx reaction but more of a toxic load/ unloading/ reloading that goes on that makes users feel so bad.  The bucket analogy is used to explain the process:
-You begin treatment with a full bucket of toxins
-CSM helps unload the bucket and toxins get pulled out of the body
-Only for your body to pull more toxins out of your cells, reloading the bucket making your body feel like hell again.
This process repeats itself over and over again and after about 2 months I got a good day!  The problem is that I still have some exposure to mold when I'm around my belongings in storage or randomly go to a house and get sick.  Lots of homes are making me ill in Bham.  Now that I've been away from exposure I can tell a toxic home in a minute.  I begin to have flu like symptoms, cognitive disorders and if I continue to stay in the home my neck begins to ache and I just get sick and have to leave!   It's pretty insane how much toxic mold are in homes throughout Bham and people have no idea.

But right now I can safely say that mold was/is the issue with my neck/back muscle pain!  Now that I am finally out of exposure and have begun to get rid of some toxicity I am for the most part muscle pain free (staying away from all chemicals are important too,  I seem to feel the same way around chemicals as I do toxic mold)! So this is great, this symptom has been around for years giving me shit! 

 Now I know why. 

 Always be persistent in your search for answers, if I did not continue to ask myself questions I might think I have Fibromyalgia right now and be dead, from Lyme and mold.

So yeah, yet again I'm not crazy.  My mind is boggled by those who except silly diagnosis, or do nothing, or who are in denial.  Wake up.  It's because of my knowledge that I have the power to regain my health.  We ALL have the power to do that.  What are people so afraid of?

The video below describes my January mold nightmare

Overall, Cholestyramine is a pretty amazing drug and I'm happy to be on it, my only concern is that it seems to be interfering with the absorption of my thyroid meds for hypothyroidism; so I have began to gain a little weight.  You have to be sure to take CSM at least 4 hours apart from thyroid meds, and be careful with supplements and food;  because it will interfere with absorption of everything, so right now I'm working on getting that schedule down perfectly.
I'm still taking rice bran and charcoal as binders too!

I have started LDA injections for my allergies. My allergens increased severely due to my constant mold exposure and this is a way to get them under control.  The interesting thing is now that I am away from toxic mold, off abx, and Lyme free we'll say... my allergy symptoms seem to be the answer to some missing puzzle pieces I've been searching for, as far as some remaining symptoms. My eye swelling for instance.

LDA injections are different than your conventional "escalating dose" of immunotherapy done by most allergists in the country.  LDA works so well because it changes the cell to cell communication and cell activity.  Our skin has regional immunological memory and this is translated to the immune system throughout the body to lower inappropriate antibody formation against the internal and external environment.  That's right food too!!  Standard allergy shots increase blocking antibodies and have a high failure rate when treatment is stopped.  The goal:  To be way less allergic to the world.  These shots are done every 2 months until symptoms are gone.

Here you can see the progression.  By the next morning my whole arm was swollen!

 How have I been since being off antibiotics?!

A little achy.  My joints sometimes feel like I'm 80 and my knees have been throbbing at night but that has been improving.  I saw my Lyme/mold doctor last week and we think it's more inflammation related.  It comes and goes.
A full life cycle of the Lyme bacteria has gone by and as far as I can tell the bacteria are not thriving.  I am closely monitoring my symptoms though.
I have huge issues sleeping and right now we are also working on ways for me to get a better nights sleep.  I am trying natural remedies and also have a few prescriptions if I need to go that route.
Natural sleep recommendations:
AOR Ortho sleep
Webber super sleep
Pascoeflair
Mirtazapine & Doxepin are the scripts I have yet to try.

Lymies, don't ever let yourself be defined by your illness.  If I would have defined my entire existence around my illness, I could see this step of letting go being a very challenging one.  Never forget who you were before your battle, if you were lucky enough to know that person. Not everybody is. Strive to be that person but the better version because you grew from your challenges.  I am so sorry that you have to go through this.  But you are never alone in your fight and I will always advocate for you.

Tick borne illness will be huge this spring and summer.  Children are at the greatest risk.  Please be careful.  I can't stand to see the thousands like myself struggle with this illness and I could not deal with someone I love having to go through what I have.

A book trailer I recently was a part of:
http://www.hypable.com/burning-world-isaac-marion-book-trailer/

I'm official now.  IMDB Credit.  Hee
http://rss.9imdb.com/name/nm8800095/?ref_=tt_cl_i9


Thanks for being with me on my journey!
Becky

This is the I'm Off Antibiotics Post!

I need to write.  I've been wanting to write.  I was going to pull up an old draft from a year ago and finish that.  Then I was going to write my Lyme story.  But shit has been CrAzY.  It's hard to focus and find the energy to write; things have been extremely hard to wrap my head around, but I do believe there is a silver lining to this story! Or better yet an ending!

I find myself in the same predicament as I did two years ago.  Homeless.  NO not really.  I have a place to stay but I do find it ironic how history is repeating itself.  I don't ever remember a time period where my own personal history was on rewind.  I just knew there had to be a reason for this and if I am right, which I know I am at this point, this is HUGE for me!  There's a quote by Winston Churchill,  "Those who fail to learn from history are condemned to repeat it."  Well yeah, that happened.

Now why would history repeat itself for me?  It's been trying to tell me something!!!!

I went on vacation to Hawaii.  Maui.  It was perfect and very needed.  Naturally curly hair, bikinis, a tan, no makeup, being out of my element, everything that would have made me crazy a few sick, anxiety ridden, years ago, had nothin on me. I have never been to Hawaii, let alone any real vacation.  Most "vacations" consist of me flying home to visit my family in Cleveland.  It was beautiful and I was pain free!  Over the last few months my health had been declining and I had suspicions that mold was the culprit.  The whites of my eyes swelled up every single day, my muscle pain was back, I was tired, could not focus and write, all I wanted to do was sleep.  I went to the allergist, my immune system is still going crazy, I'm highly allergic to the world, although I don't feel that way right now which is odd.

I wish you could see the huge red splotches better

I knew I was exposed to toxic mold in my previous home and I assumed my belongings and other environments where I frequent had been causing my symptoms.  My plan was to throw nearly everything I owned away and wash all my clothes in Borax.  I did that, then went to Hawaii!

Cleaning and getting rid of shit

Washed clothes then covered in garbage bags

HAWAII

View from the porch

Where, let me just say this again...I was pain free and felt HEALTHY!  Upon my return, 2 days in my home I had severe pain in my back, I felt sick and could not do anything, ANYTHING. This led me to an epiphany and I knew I had to leave, so I did and I am starting to feel better already. :)  My guess is that the tick tick ticking I hear above my bathroom is a water leak. Toxic mold is real and it can make you very ill. I've been out of my house for a few consecutive days and already seeing massive improvements!

Although I feel displaced and it's going to be hard to move right now, I am very lucky that I have somewhere that I can go in the meantime and training clients pulling through for me yet again. I'm really lucky.  History will not repeat itself again.

I saw my new doctor yesterday and he thinks I'm right.  ALSO we both feel as though my Lyme disease is under control!!!!!!!!  I am off antibiotics!!!!!!!  We are going to see how my immune system is working and start treating mold.  This is my protocol:

Mycotoxicosis Illness/Lyme disease remission (yup I said it) 
https://chriskresser.com/5-things-you-should-know-about-toxic-mold-illness/
-Thyroid meds
-All my millions of supplements 2x a day (active b's, vit c, Liver Care, vit d, fish oil, quercetin, probiotics, things like that)
-Terry Naturals Glutathione 3-5x a day
-Charcoal 2000mg 2x a day
-Rice bran extract 1 spoon full a day
-Cholestyramine 1 packet 2x a day
-Green tea extract (epigallacatechin gallate) 500mg 3x a day
-Infra red sauna
-Might start a lil heated yoga
-Constitutional Hydrotherapy- This is really interesting!  I have never heard of this.  I have never heard of this!  Research suggests amazing.  2x a week
-And NOOOOO antibiotics

Let's hope that my immune system does it's job and that my leaving the premises of toxic mold fixes me!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Happy birthday to me It's becoming a reality.

http://brewlifewithlyme.blogspot.com/2015/07/my-bright-happy-future.html

Beaches

And babes