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

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!