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July 31, 2012

Not for the Squeamish - Found While in Mexico

I recently got back from a relaxing vacation in Cancun, Mexico.  It was wonderful for my body and my motivation to beat Lyme and my co-infections.  I should warn you before you read the rest of my post if you get grossed out easily, this post is not for you. I've got pictures and stories to go with them. This is not for people who are squeamish. So please proceed with caution.

I learned about a really interesting, ok wo wo, approach to healing the body. It's called Earthing.  Basically, it is my understanding that you stand on the earth and try to let the earths energy help my lack of energy.  I could accomplish this task by hugging a tree, standing in the wind, or putting my feet in the ocean, just anywhere I felt I could connect with the Earth.  I went with the ocean alternative. I didn't really feel any energy change but I tried to be open to the idea, especially because it's not going to hurt me in any way. I chose to try earthing this one evening after dinner, when my family took a walk down to the water from our resort. 
My family is super supportive of all the bizarro things I've been told to do to help my body heal.  So on this night of earthing, my sister Molly reminded me of a conversation we had on the airplane to Mexico.

It went something like this:
Molly: "Have you ever talked to your parasites?"
Me: "Um no, why?"
Molly: "I learned from my co-worker that you can tell your parasites to leave and they will. It's like once you acknowledge them and tell them they are not welcome then the body works hard to rid them."
Me: (thinking no way the would EVER work) "Hmm, ok, that is really weird but whatever." .....our conversation continued, but you get the gist of it. 

So while I was trying to Earth, Molly reminded me to talk to my parasites. I was still thinking she was off her rocker, but my family over heard us and started yelling at my parasites.  It was quite a scene. I'm standing on the beach with my feet in the sand with five people around me yelling "Get out!" "It's time to leave!"  My baby sister, Amy, rocks at Spanish so she decided to speak to them in Spanish, in case they changed languages when we changed countries. Lol. I have no idea what she said, but I appreciated the gesture.

The next morning I had a hard time waking up as usual. Eventually, I rolled out of bed to use the restroom and before I flushed I looked in the toilet at my pee and toilet paper. (I've gotten pretty used to this because I can tell if I need to hydrate by the yellowness of my urine. The goal is clear urine.) You wouldn't believe it but there he was a 3-4inch parasite.  I panicked for a minute because I didn't bring down my parasite collecting kit so I did the best I could and emptied a bottle put on some latex gloves and grabbed the sucker from the toilet.  He was so strange looking.  He was brownish and clear with a definite head with antenna looking things. His body reminded me of a jellyfish.  Now my priorities had changed  a little because this is the moment I've been waiting for - to send of my parasite and get it identified so I know what drugs will kill it and all of it's friends. This little guy and his cousins could due responsible for me not improving more quickly in the treatment! I am surely not a fan of reaching my gloved hand into the toilet to collect my specimen. Ew. I still cannot believe yelling at my parasites actually worked.  It had been months since I'd seen one. And I'd never seen one that looked like this.

I've had parasites come out of my body before. I had the scariest one come out early in my treatment. This nasty guy looked thick like a garden worm only it had more swimming abilities.  I saw his dark brown body in the toilet and wasn't sure if I should reach in and grab him or run to get my phone to take a picture.  In all of my panicking and not making up my mind the sucker swam down the toilet! He was still alive! Blek! Better out than in though, right!?!  From that day forward I have never seen anything else like it. I know it wasn't in my toilet already. He came out with my urine and was still alive. I know you are dying to ask, Did it hurt?! It didn't hurt at all, actually I never would have noticed it if I hadn't been used to checking the color of my urine for hydration.

About five months ago I encountered another species of parasites exiting my body and these guys were skinny white, kinda like finger nail clippings but slightly bigger.  I was never able to gather a sample of them because the are masters at hiding.  I did obtain a parasite identification kit for the next time I see any critters so I can collect them and send them off.  It never crossed my mind that it might happen while I was relaxing on vacation.  Well, it just so happens my next time was in Mexico.  My step-mom was so sweet, we exhausted every option to try and mail this sucker in, but Mexico has strict laws about mailing fluids and my parasite would shrivel up if it wasn't in a solution so my only option was to try and bring him home with me and then send him out.  This plan backfired in a bad way. He fully disintegrated and I was really sad because i really wanted to know what it was so I could take the proper medicine to kill him and his offspring.

Fortunately, my parasite story does not stop there.  I have continued to get lymphatic massages during the majority of my treatment.  My Lyme specialist can tell that my lymph system is very congested and his guess was that I had many parasites just waiting around to be exited with the rest of my lymphatic waste.  I think he was right! After seeing my massage lady, I had two more parasites greet me from the toilet and I am happy to say they looked very similar to the one in Mexico! I had my kit and put those suckers in the mail today.  I should get results in a week or two.

One thing that many people don't understand is we consume parasites all day every day in our water and on our fruits and veggies.  You have parasites inside of you right now.  The difference between you and me is your body can fight off the foreign invaders and mine cannot instead I've turned into a breeding ground for these nasty creatures.  I think that's why all of the ones I've seen have been substantial in size.  I can say without fail I have physically seen three different species come out of what else is in there? That's just crazy to think!

Parasites are master hiders and somehow know your thoughts and actions. Like whenever I am asked to do a stool analysis to look for parasites or eggs or anything parasite related my test always come of negative even though I CLEARLY have them coming out of me.  Also, around the full moon parasites have orgy sex parties to reproduce which make me feel super uncomfortable and unable to sleep. It's like I feel the vibration of the music but can't hear it. Tonight is that night. I'm exhausted, but the critters are gettin' jiggy with it, so I just have to tough it out. During the full moon (when I actually sleep at night) my dreams are usually more vivid than any other night in the month and I typically have one night of complete restlessness just before or just after the full moon. That night is tonight and it's annoying.

As promised here are some pictures of my parasites that are now off to Scottsdale, Arizona for identification at the Parasitology Center. There are three pictures but really only two parasites that I gathered for this test.  The both look like the skin or outside layer of a larger intruder, or they could be complete parasites themselves.  They are very airy but I imagine they use their flexible body to fit anywhere and grip onto things in my body...kinda like jelly fish. These were the best pictures I could get, they really are substantial in size, but these pictures don't show that well.  In each picture the unwelcome guest is curled up or scrunched.

Looking down into the specimen bottle. He looks so tiny but is really 2-3 inches.

This shows all of their color a little better, but this one is curled up, I think it's in the fetal position because his life is over now (not sure if he was still alive). This is the larger specimen of the two.

This is just another attempt of showing the first one. 
As a side note, you know you are at a strange place in your life when you are openly posting pictures of what you found in the toilet a few days ago. I am so ready for my treatment to be over, but I know that these stinkin' parasites deprive me of nutrition and can wreck havoc making my treatment less effective. So I will continue telling my body to purge anything that is foreign.  

Note to self: Do not google parasites or any combination of words with parasites. I'm pretty good about bodily fluids and such, but I was trying to find something similar to what I had seen and I just found really nasty pictures. You've been warned. I bet many of you want to look at them now because I told you not to and that makes me laugh.

July 11, 2012

4 Years With the Love of My Life

Today is my four year wedding anniversary.  Justin and I aren't really celebrating today because I had three doctors appointments and Justin is working late tonight. But, it's totally okay. Our wedding was wonderful, the memories make me smile and Justin got me an orchid today which was so thoughtful because at our wedding we had orchids everywhere and they are a beautiful reminder of my Grandma Patty.

Last year on my wedding anniversary, I wrote a well-worded blog about being married to Justin and how he honors his vows everyday.  I honestly considered copying last years post and saving it for this years post! Lol...because I just don't know that I can write something as well written today that explains my thoughts on this topic! Click here to read last years post. So here are my thoughts today:

We were reminiscing and laughing earlier that we started dating when we were 14.  We literally have been together for roughly a decade!  After coming to that conclusion we decided two things: A-we are getting old and B-we are a little crazy for falling in love so young.

I can't believe we have had to deal with all the things this illness has brought into our lives over the past four years.  It is unimaginable as newlyweds - probably a worst nightmare to many married people and those who hope to marry in the future.  Sickness is so rough on a marriage.  Caretaker becomes the primary role and all spousal roles that were originally established get all messed up.  I try to clean up after myself, but in all reality Justin is the primary cooker, cleaner, provider, driver, everything-er (he basically does everything and I do what I can when I can to help him).  He often brings me medicine from the pharmacy instead of taking me on dates because I can't always make it out of the house or even my bed! We have learned to enjoy small things, like comical pictures or funny youtube videos instead of movies because I usually fall asleep.  So we have adapted, believe me it is not how we want the rest of our lives to be, but it's manageable for now. The best part of it all is when he looks at me and I can see in his eyes that he still loves me, regardless of not showering in a few days and being uncomfortable in my skin, she still sees through all of that and genuinely loves me for me.  I am one lucky girl.  Who knew I would find someone so wonderful at such a young age!

My family and I have talked so many times.  They didn't really want us to get married so young. They wanted us to graduate first, but we were committed to being married because that's what the Lord was guiding us into. It was hard to understand it at the time, but I look back now and see it was God's perfect plan.  Justin was there when all my symptoms really started to get bad. He was there to advocate for me and help me not feel crazy when all the doctors seemed to think I was.  He was there for me to teach me about what was going on with my body and learning how to give myself a shot or start IV fluids along with so many other things.  My mom refers to Justin now as "he walks on water"- meaning he is perfect. I know Justin doesn't walk on water...and really he is not Jesus, but he is a Godly man and I am so lucky he loves the Lord and loves me!  I'm so proud of Justin sharing his knowledge of Lyme when he works, is at school, or at volunteer fire.  He has had so many conversations with patients about Lyme disease.  He is working right now in the ER taking care of many sick people and even though I miss him, I know his patients are receiving the same quality care he gives to me.

Our first date about a decade ago :)
Happy anniversary, Justin. Thank you for taking care of me, but most of all for loving me through this treatment.  I'm so ready for it to be over so we can fully enjoy our marriage! I love you more than you know. You are wonderful and I honor and respect you always!

July 6, 2012

Want to Know A Secret?

I am paranoid about ticks this year.  Actually I'm paranoid of any black speck or bug or spider because before I study them I am convinced it's a tick! It's a little ridiculous, I mean I can't live my life in fear, but I just know how bad this disease has messed with my life and I want to protect anyone/everyone from this disease and here I go.

As you may have heard, many news reports have come out and said this is the worse tick season ever recorded.  There are people at the Center for Disease Control who say ticks do not live in Nevada and there are few reported cases of Lyme from this state.  Well I am a born and raised Nevadan and I have Lyme Disease.  Seriously, I am like the poster child of who should not be at risk for Lyme disease and yet this illness has taken over my body!  The CDC does not recognize my case of Lyme disease because I didn't report it when I was first bitten (I never knew I was bitten until about 10 years post-bite). 

Here's a fact: If you get bit by a tick (which is likely not larger than the dot of an "i") and you don't see a bullseye rash (only 30-50% of people actually get a rash) you will also not recognize flu-like symptoms within a few days of the bite, then you too will get a negative test result by the CDC's standards.  This goes back to more of the controversy on Lyme and I encourage you to watch Under Our Skin (now available on netflix and hulu) and/or check out a reliable website  Oh and to add to it, often ticks bite in hairy areas like your head or genital region so even if you got a rash you wouldn't see it.

I can think of how many times I've thought growing up...."oh, that's just another strange bug bite" and not think anything of it. Most people never feel the tick biting them and it is so easy to miss looking for them because they are so small! So they backwash whatever disease they are carrying into your body as the suck in your blood. And the worst part is you don't even notice. These critters have landed the name "Nature's Dirty Needle." How fitting!

This picture of California is two or three years old and comes from one of the only reputable sites concerning Lyme,  

The orange areas indicate: Deer ticks found in 56 counties
Red indicates: Lyme-infected ticks found in 42 counties

Now here is my thought...since when do bugs know territories!  Ticks migrate on animals and people and I live very close to the border of California and Nevada and my symptoms go back about ten years (I think the actual severity of infected bugs is out of control). My point is, please check your kids, pets, spouses and check yourselves! If you are having a day outside and a few days later you come down with flu-like symptoms or cold-like symptoms...GO TO THE DOCTOR and get a z-pack or two! Be preventative because a couple of weeks on antibiotics is WAY better than years of undiagnosed pain and suffering only to be followed by months to years of treatment that is controversial and many insurances don't cover.  If your doctor refuses antibiotics to you because he/she is unaware how rampant Lyme is then you need to find a new doctor. It's not worth the risk.  I would not wish this disease on anyone. Seriously. 

The CDC likes us to believe we don't have ticks here or our ticks are of no danger and unfortunately that is not the case.  This all goes back to the controversy with Lyme. It breaks my heart to know that so many people are just uninformed.  I went undiagnosed for so long because none of my doctors knew to look out for Lyme disease because it's "only in the East". Here is an article from the Reno-Gazette Journal about ticks and their existence in Northern Nevada.  This is my cry to let everyone know you can get Lyme disease anywhere (except Antarctica...if you live there you are safe!). 

Okay, I realize I am paranoid and a little extreme about this issue, but the weather is beautiful out and everyone wants to play outside so we all just need to be educated on what to look for.

Here are some additional links that you may find helpful:

-How to remove a tick.
-How to protect yourself and loved ones.
-If Lyme is so bad, why isn't this on the news?
-I don't have time to watch the documentary....can you sum it up for me? Sure. Click here.

Also, one more is believed that the Lyme bacteria can be transmitted sexually, in utero, and by other critters like mosquitos and bed bugs. There is not enough scientific evidence to prove or disprove these theories, but as the Lyme battle continues, I want you to know it's a possibility. 

All in all, if you are reading this, then I care about you and I am glad you landed on my blog.  I want to educate you so you can educate others. I thank you for reading and allowing me to be a little paranoid about this tragic disease...I guess I am paranoid enough to spread the word.  Remember, even if you've lived in the same place forever...this years tick season is record-breaking high so a place you considered to be "safe" from ticks may not still be safe AND Deet does not work to prevent ticks!

July 3, 2012

How Tick-Borne Diseases Relate to the Full Moon

As I begin to write this blog I am thinking about how stinkin' tired I am and about my new symptom that started earlier this afternoon.  I am experiencing vertigo/nausea the same way I feel when I get sick on a boat...and absolutely nothing will make it feel better :(  Everything feels like it is moving and my body can't handle it.  I've tried every remedy I can think of an nothing is helping.  I am able to sleep in only 20-30 minute increments which is just miserable.  I have taken everything I can for nausea, hung two bags for IV hydration, drank tons of water, stayed on top of all my medications, tried cool towels/ice packs on my head, neck, chest and belly...but this symptom is stronger and more fierce than all the tools I have.  Justin and I have been talking on and off all night about going to the ER.

For most people feeling this way, it would probably be an easy answer to just hop in the car and go to the emergency department, but for a patient with Lyme it can be a bigger hassle then just living with the symptom itself.  Lyme patients often end of defending themselves and their treatment protocols because it is extremely rare to find a practitioner on the west coast who knows how to test for Lyme disease and even fewer know how to help treat that random symptoms that come an go (like tonight).  

In the ER, the doctors are not concerned with really getting to the core of your problems, but rather symptom managing...and I'm fine with that, that is their job. Treat patient, order tests, send patient home, treat next patient etc.  They run tests, order x-rays or sonograms, hydrate the patient through IV fluids, and in most cases send you on your way.  They might give a Lymie something to take away all their pain or check their ears to see if it is an inner-ear issue. But it really depends on who is taking care of you in the ER.  It's kinda like poker, sometimes I'll get a good hand and be treated great and other times I get an awful hand - leaving me feeling more discouraged and frustrated than when I walked in the front doors.  For me, going to the ER is a huge risk because some medical professionals refuse to acknowledge it as a true disease and will even make comments like, "Lyme is only on the East Coast"; "You don't have Lyme, you just want meds". Lately, I have learned many Lymies are seen as pill seekers....which is so not true in my case.  I have way more pills and IVs to last me forever.  It is frustrating to have my character judged based on other people's stupidity.  I have always been a rule follower since the day I was born and the thought of being unethical and bouncing around from clinic to clinic to try and get medications is so stupid.  All I want is to be heard and to discuss possible options that might make me feel better.  Come on just check my blood, listen to my heart, do an CT scan and see if you can determine what is causing me to be so uncomfortable.

Can't they just look at me and tell I feel awful?...Maybe...sometimes, but because Lyme is an invisible illness it makes it harder for a practitioner to determine how bad someone feels. The saddest thing for Lyme patients who are treated by practitioners who don't understand the complexities of Lyme disease, the patient doesn't get the help they need or deserve.

I called my mom tonight (at 2:30am...sorry Tom & Mom) trying to track down the emergency on-call number for my specialist to see if I am having a dangerous drug reaction or something else that needs immediate attention.  I haven't heard back from the doctor yet, but my mom did remind me it's a full moon.

Oh, of course it's a full moon!  That's when everything bizarre goes down. With Lyme, the bacteria Borrelia burgdorferi live on a 28? day cycle with the full moon and have orgy parties during the full moon so there are lots of new parasite eggs to grow the population (blek!).  

I used to be able to guess the day before a full moon because I would have a super weird dreams and I was 100% spot on each month. (Okay, except this month but I can't even get to sleep tonight for longer than 20 minutes!)  One cool thing, is I can tell my parasite treatment is working because I do not have nearly as many vivid dreams as I used to around this time of the month.  I still have dreams, when the rest of the month I don't remember any...but they are much less detailed and not as frightening.

My last thoughts for the night..."It must be a full moon" is a common thing to hear from people who work in hospitals, psychiatric units and emergency rooms.  So something happens between our bodies and the full moon, but I don't know all the answers, I only know there is a connection.  I wish I could not be so dizzy/motion sick so I could go to sleep.  I can't even close my eyes without it making me very uncomfortable!  So who knows, do I dare step into the ER on this full moon night?  Is there anything that that can do there that I can't do from my own house? Do they have any medications that would help my symptoms?  I don't know. The juries still out  on what to do tonight.  I'm so glad I have Justin here tonight to take care of me every step of the way.  The thing we both decided and agreed on is the ER is open 24/7 so if we go now or a few more hours it's not really going to make a difference.  Best thing for me to do is try and sleep and let my body resolve what is going on inside.