History and Lyme Journey Update with Video

I recorded a read-through of my Lyme Disease Journey for those of you who have difficulty reading long bits of text.

[Yikes! Hello there, it's been a little while since I've last written an update. I have, however recorded a few video snippets here and there and will eventually use them in some form or another.

I saw my LLMD (Lyme Literate Doctor) back in the end of January and it has been a bit of a bumpy ride thus far. Today (3/3/14) marks day 40 since starting any "official" form of treatment for Lyme Disease! Dang. Time flies when you're having fun! ;)

Since I saw my LLMD, I have:

1. Had multiple vials of blood extracted, on multiple days, from my already poor, dehydrated body;
2. Pooped in a box (several vials actually) and FedEx'd it across the country so some poor dude in Georgia (?) can sift through and test it for other parasites or organisms;
3. Made 2 trips to the hospital (45 min away) to have blood drawn, that I then had to ship via UPS Overnight Air for a very important heavy metals panel, only for it to not arrive within the 24 hour window to be tested, (I am waiting to hear if the 2nd batch arrived in time);
4. Had an EKG prior to starting treatment.
5. Seen 2, scratch that, 3 other doctors (2 primary care MDs and 1 psychologist, who is awesome, might I add)...
6. I am still in the process of getting my wheelchair. I could never have imagined how difficult it would be.
7. I go to a PT/OT this Thursday for evaluation and maybe they'll have some sort of suggestions/ideas to help me! Walking has become excruciatingly painful and very dizzy-making.
8. I've been very near ER status for dehydration and dysautonomia flares. I'm doing the best I can to avoid it.

My first appointment with my LLMD was so overwhelmingly positive that I do, indeed, have Lyme Disease and more than likely 1 or more co-infection. I was informed by my LLMD that a bulls-eye rash is, indeed, indicative of Lyme Disease even by Centers for Disease Control (CDC) standards. (The CDC is a little bit backwards when it comes to Lyme Disease diagnosis guidelines and treatment. ILADS (International Lyme and Associated Diseases Society) is very knowledgeable and reputable.)

Let it be noted that:

1. I had an Erythema Migrans (EM) rash (bulls-eye rash) in Sept. 2009,
2. I have been very symptomatic since childhood,
3. I have tested, on my insistence, (negative) for Lyme on at least 3 separate occasions. (2007, 2010, 2013-CSF lumbar puncture).
4. I had very limited knowledge/education regarding Lyme or co-infections back then, so I'm not sure exactly which tests were run. More than likely, just the basic ELISA Lyme Panel that is notoriously inaccurate. Regardless, they were all negative.
5. Not one doctor thought or wanted to investigate further.

For the last 7 years, after becoming so ill I had to drop out of college, I have been symptomatically treating Dysautonomia, POTS, Daily Migraines, Fibromyalgia, Sjogren’s, Hashimoto’s Thyroiditis, all to no avail. In reality, I was further toxifying my already delicate body with countless unnecessary (unbeneficial) medications, many of which led to greater complications and side effects. At my first extreme low-point, ~2009/2010ish, I was swallowing 13+ prescribed pills a day. I was hospitalized for mental breakdowns and major depression on two separate occasions. As well as being hospitalized for 5 days for a DHE Migraine protocol to try to break the 13 year cycle of daily migraines. (Read: Neuroborreliosis)

2012 was the year I decided I needed to take my health and life into my own hands and pursue a more natural approach. I started incorporating green smoothies into my daily routine. I, then moved to Southern California in search of my health/life. I found a few doctors who were as supportive as they knew how to be, given my “unique” situation. I started pushing myself beyond my body’s limits and started exercising (mostly swimming) every day, only to remain incapacitated afterward. I completely changed my eating plan, cutting out foods I am allergic to, and focused on getting a life, a future, and above all - health.

100 lbs less than my highest recorded weight, (while still technically overweight), I gained confidence, for sure, but my body was not getting stronger. It was wasting away. I looked great, but felt like death. My biggest issues at this point, were/are excruciating joint pain, daily migraines, and nearly passing out several times every day. The only drugs I remained on were the ones that prevented me from passing out, along with flaxseed oil, and liquid vitamins D3 and B-complex. I completed about 4-5 rounds of Botox for my migraines. I had not realized they were helping until I had to stop them. My migraines got worse. I am considering trying again in the future.

NOW, 30 lbs heavier, due to inability to walk/stand for more than a few minutes, I am at my lowest point, health-wise, but I am more optimistic than I have been in my whole life.

In January 2014, I received a clinical diagnosis of Lyme Disease due to my very lengthy history of wild and wacky symptoms that, until now, no other doctor (I stopped counting at 43) has been able to pinpoint a cause/explanation. I began a regimen of an oral antibiotic (ABX), probiotics, anti-fungal, and an internal herbal and external detox protocol right away.

I was instructed by my LLMD to start my antibiotic immediately, and to have my blood drawn on day 10-12 for a proper Lyme and Co-infection test to be run. This is what is known as a provocation test. Meaning, the ABX should start working their magic and get the bugs ticked-off (forgive me, I couldn't resist) enough to start moving so they come out from hiding deep inside my muscles, joints, and (hopefully) brain.

From my understanding, most people with seronegative Lyme disease, do not have strong enough antibodies to trigger a positive Lyme blood result. Our immune systems have been through the ringer.

Along with the "faulty" generalized and non-specific basic Lyme panel, many people remain undiagnosed or misdiagnosed with something else. MS, Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Dysautonomia, Alzheimer's, Dementia, Depression, Bipolar Disorder, etc, beyond etc. THIS WHOLE-HEARTEDLY ANGERS ME.

Because, guess what!

My Lyme results came back. VERY POSITIVE. I am CDC AND Western Blot positive for Borrelia burgdorferi (and co-infections). That's Lyme Disease, folks. And because not one of my previous doctors (or specialists) knew to order the correct test or were willing to think outside the box and consider the vast realm of possibilities, I have Stage III - late disseminated Lyme Disease. Meaning, it has spread throughout every part of my body and has affected my brain. (This is both, terrifying and also a bit of a relief. To finally have a real answer. Something I can work with.)

To that, I can only say, "Oh well." I can only move forward and not focus on where things went mightily wrong, rather, what I can do right now. And right now, I am sharing my story, that is not unlike many very chronically ill peoples' stories, with YOU.

Maybe you'll stumble upon one of them, and continue to learn the disgusting truth about how huge of an epidemic Lyme Disease actually is. And maybe you'll be intrigued enough to do a bit of research and pass on this vital information to anyone who will listen. Maybe, one day we'll start saving lives instead of contributing to the unnecessary suffering that so many are going through.

Anywayyyy,

My LLMDs office has been checking in on me, and on day 34, we decided to discontinue the antibiotic (ABX) due to hearing loss, and quite noticeable increase in POTS (Postural Orthostatic Tachycardia Syndrome) and heart probs. I am very sensitive to many meds.

I go to the LLMD office next week for the remainder of my test results and will be starting a new treatment for my Lyme Disease. In the meantime, I am working diligently on detoxing as best as I can and preparing my body for Operation: Road to Recovery.

TL;DR (Too Long; Didn't Read):

• I am ill, very ill.
• I know what is wrong with me, finally!
• I have a specialist who is on my side.
• We have a plan.
• I am cautiously and patiently optimistic.
• It has taken 25 years to become this ill, I am aware it is going to take quite some time to beat this.
• I am grateful to you for reading this, and am more than happy to answer any questions to the best of my abilities or point you in the direction of someone who can.
• I am a warrior.]

Awkward questions deserve awkward answers, right?

‎23:23:03 Sat, Jan 4, 2014 

"What have you been up to?‎"

‎

Oh, these 6 little words, I loathe thee. I almost never know how to respond to this question, or the dreaded, "How are you?!" ‎I'm not sure if this is because I am just so damn awkward, or if I am ashamed or just too slow to think of a proper and honest answer. So, I usually slap on a sugary sweet smile, and instinctively blurt out, "Ohhh, not much." or the automatic, "Good, how are you?!" or even the almost intolerable, "Nothing." or "Fine."

I pride myself on being a kind, genuine, respectable , and mostly classy person. But above all, honest. So, you can probably see why the aforementioned automatic responses are duly frowned upon in my book, yet I continue to lie through my teeth when asked these uncomfortable and often too personal questions. 

Here I am asking myself ,"Why?". ‎Why do I lie to strangers at the checkout? Why do I lie to acquaintances? Why do I lie to nearly every person that I come into contact with who blurbs out these oh-so-nonchalant greetings? 

I've come to these conclusions:

I am probably too "out of it" to respond correctly or honestly. It's pretty sad when *thinking*‎ takes too much energy. 

I probably don't feel comfortable enough with ‎the askee to divulge sensitive information such as, "Oh, you know...just the usual, explosive diarrhea with a case of the giggles...An average Tuesday evening in SickVille." or "My uterus is attacking me from the inside, out!" 

What about when "Nothing." really is the truth? I tend to like to appear much less pathetic than I actually am. It seems to ease people's uncomfortable thoughts and feelings when learning the extent of my so-called Life. So, I put on a hefty smile and think of something appropriate to share. (Mind you, this does not happen often, I usually stick to the least complicated method of conversation.) This is all happening subconsciously and within seconds of the dreaded Question. So, if you ever receive an automated response, don't be offended, it's not that I don't want to share precious information with you, I probably can't or don't know how at the moment. 

Then, there are the situations when someone genuinely cares and wants to know how/what I've been doing. ‎These are almost as difficult, because oftentimes, I don't know how honest I should be. Because *of course* I am thinking about the *other person* and don't want to worry them if I'm not doing well. (I'm working on being more honest and open about my thoughts and feelings and learning to ask for help-in 2014.) 

I know I need to let people in, but dammit, abandonment sucks! I've been trying the whole, "I am me, and if you don't like, or can't handle my shit, then you don't deserve me." attitude. It is absolutely logical, and sometimes it helps to snap me back into gear when I'm feeling very inwardly awkward, but the fact is, I've been isolated from social events (Read: society) for so long that I've  changed. I used to be a friggin social butterfly! 

I've forgotten how to just be. How to interact with people in a natural way. How to have a damn conversation with someone. Call it Socially Retarded, Social Anxiety, Socially Awkward, or just plain Lame; that's me. I'm overly stimulated by outside forces and inwardly damaged by physical and neurological disabilities. Cool! 

But, I am me! And, I'm learning to adapt.

Please feel free to share your thoughts, feelings, and experiences!

This, that, and my life as a car

Today was the day. December 18. 2013. The day my life was going to change. Or so I thought. I've had an appointment scheduled with a LLMD for about 4 months now. 

This led to that, and complications with insurance, and delays with current doctors, loose ends needing tied up- all of this forced me to have to wait to see the specialist. A moment I have been dreaming about, yes, seriously, for probably about my whole life.

‎The way I think of it is this: I've waited this long for answers, I can absolutely survive another month. Who knows, there might be someone who needed this appointment more than I do, and it might just be their Holiday miracle. It also gives me more time to detox my poor lil ol' body. 

Since I can remember, I have always had something wrong with my body. I was always sick. Something *always* hurt. It wasn't always the same thing, almost like my body was on rotation, which was almost somehow worse. Having to explain that while, yesterday I could not use my right wrist at all, today, however it is my left wrist that is unbearably painful. Swap out "wrist" with any imaginable body part, and on a daily basis, this is how the story goes. 

Pain is really only a part of my problems. ‎I am afflicted with a terrible brain, that supposedly checks out just fine. Wanna hear a little secret? Well, the things that are often unseen are sometimes the most fun, and ironically, present the most problems. *ahem*

My autonomic nervous system (the thermostat of the body, that controls every body function that you're unaware of) is WHACKED.

Imagine, if you will, a vehicle that is stuck in 1st gear while going up a steep incline. You let off the accelerator, while simultaneously feathering the clutch, but something is not right. Something is out of sync and you stall out. You start to roll backwards at an incredibly frightening speed. You start to panic, your heart is pounding out of your chest, while racing at speeds faster than your body is going. You're quickly losing altitude, and gaining even more speed, but in the wrong direction! You start sweating. Nausea kicks in at the most inopportune moment. You think, well, "I'll just hit the accelerator even more..that'll help!" It doesn't. It makes it worse. You're already past the point of rescue. So. You slam on the brakes. It's the only option until you'll eventually and inevitably crash and burn. Then, you have to begin again. Very, very slowly. Even slower than you had begun the last time, because your engine is damaged and you must take care of it until it's on the mend. In 1st gear, again, you try to climb the mountain that is life. Eventually, you may make it to the top of an incline, a plateau, where you're unable to continue ahead, less you free-fall into the abyss. This. This, is your time to acknowledge how far you've come. To assess the damages. To appreciate what is around you. Take it all in, for you do not know if you will make it up the next climb. Take the necessary rest, and prepare for the next part of the journey of Operation: Road to Recovery. 

I can't believe I would ever be wheelchair shopping

A few months ago, when walking/standing got to be unbearable/ very limited, I reluctantly (and I mean that...it took me a while through tears to talk to my mom about a wheelchair) went to my (very narrow minded) rheumatologist about how painful it is to walk and stand. It takes me a bit to cry in front of people, doctors included, but she brought me to tears. She turned it around on me and made it seem like I was giving up and that it would make things worse by relying on it? I understand it to a point, but I. Am. Miserable. 

She then brushed me off and shoved me on my way with a RX for vicodin. (I have never taken narcotics before and stressed through tears that I did not want them.) I begged for her help and she denied me of any compassion or assistance. SHE gave up. I did not. I am beginning a new journey and if I'm ever going to make it out alive and healthy, I need to be able to get out of my house and bed. Not for fun. For the necessities. Appointments, grocery shopping, and getting the mail. WOOT!

This won't be permanent for me, I'm determined to that. But sometimes we all need a little help, right? (Even if for some reason it is long-term or permanent, that wouldn't be so bad. I could do more than I can right now, and at least I'd be able to gain some sort of independence!) Anyone seen the Sundance series called Push Girls? I highly recommend it for a glimpse into a wheeled life. It's on Netflix, and has completely changed the way I view wheeled individuals. 

My QUESTION to you is do you use a chair, and/or can you recommend a fairly inexpensive, reliable, comfortable (and possibly cute? I'm in my 20s, and would rather try to get some enjoyment out of life's little obstacles-or I can decorate it.) chair that I can purchase online? I am a frequent Amazonian and have been browsing, but I feel I need to just. do. it. And soon. 

If you were able to read this, I thank you and applaud you. I sincerely hope you can't give me any advice because I hope you aren't in this situation. But I thought I'd ask! 

Take care of yourselves! =)

Starting a new journey! Wanna join?

Things have been pretty up in the air as of recent. A lot has happened, yet also a lot of nothing has happened. I feel as though my life is flying by me, while I'm standing painfully still.

My little brain has been dedicated to research and development for the past few years. (Of my body.)

I can't believe it's almost 2 years since I moved to California. That boggles my ever living soul. We are nearing our 2nd lump of holidays "on our own". Things have been far from easy, and are only going to get more difficult within the next month or so.

In a month from now I will have seen an LLMD (Lyme Literate MD) who can hopefully help put together the pieces of the crazy puzzle that is my life.

I have suspected Lyme Disease ever since I noticed a bullseye rash on my wrist in the fall of 2009. I was disregarded, brushed aside and left on my own to wither away. And I did. For a few years, until I decided to take things into my own hands.

I decided I had to step up and become my own health advocate. Since no one else could, or would. Starting with the "simple" act of eating. I'm now consciously aware of what goes into my mouth and how it will affect me, positively or negatively. I adjust accordingly. When that didn't "work", I began digging a bit deeper. The wheels were spinning and with lack of improvement, sometimes comes the ability to slow down and look back. To reconsider possibilities, and to slowly put pieces together.

Lyme Disease is one of those things you hear about and think, "well...that couldn't be me" and you go on with your life. Until you take a turn for the worse.

Most people know the "basics" of Lyme Disease, that it is something you "catch" from a tick, and is usually spread by deer in "deeply wooded areas". While that is semi-true, it is not the whole truth. Lyme Disease is the single most complex ailment I have yet to come across in my Research and Development stage.

The more I learn about Lyme Disease, the more I am flabbergasted by; not only the absolute ignorance of the layperson, but doctors as well, and the lack of credibility in our medical communities. Almost to the point that one might begin to think "They" (The Almighty, Narrow-minded They) want people to remain sick, suffering, miserable human beings, because They fail to remove their heads from their rear ends long enough to listen to people who care. People who want to make a difference, by adjusting their minds to consider all of the possibilities.

There *is* treatment available. Lots of options, all of which are much more complex than the typical "21 days of doxy, and you're good to go!" This is a raging misconception, and we must ALL be educated. Starting with healthy people. http://lymedisease.org/ is a good place to start!

I'm hoping I won't have to try them all, but at least I'm reassured I won't run out of treatment options because I won't stop fighting. Which is why I am planning on documenting my Lyme Journey. Not only for others, but also so I know where I'm at. I can look back and see how bad I was at certain times and also to track progress! *Fingers crossed!* I have a feeling video updates might be coming sometime soon, as my brain is just not that into the whole computer and typing while looking at the blinding screen thing.

So, bare with me here. I'm sure someone will read this......someday. And that's all that matters, if even only myself in the future. =)

DetoxMay!

DetoxMay*

Black Bean Hummus w/ GF "Chips"

GF "Chips" w/ Guac & Salsa

So, it's been 11 days now of DetoxMay! I've been free of gluten and dairy since May 2nd and completely vegetarian since March 14, 2013, that's two months! I have to admit I definitely see this as a life-change rather than a "hip and trendy" fad. I think the main deciding factor is that I recognize the consequences I have to deal with when I make bad decisions.

Eggplant "Parmigiana" w/ GF Pasta

GF Pasta w/ Veggies & Herbs

Surprisingly, I've also recently (just today in fact) realized some positive effects of being gluten-free, dairy-free, and meat-free! (I should add that I'm also egg-free, soy-free, and corn-free for a while now.)

Here's what I've noticed throughout the past few weeks/months/year since I've changed my eating habits:

•Obvious large amounts of weight-loss (exercise included).

•*Huge* loss of bloating (face and stomach) This is a dairy thing. I have hip bones!? ...and a waist! Also, ribs/breast chest bone things?

Massive Veggie Stir-fry/Curry

•For some odd reason I've been waking up early. I'm attributing this to the lack of gluten. If you're gluten intolerant or have wheat allergies (or allergies of any sort), they physically wear your body down. Maybe now that my body is rid of gluten, dairy and meat it doesn't need as much sleep? Who knows. (I am, however, still chronically fatigued with everything else medically and physically going on, but I've been working on that as well!)

•I mentioned before that my mood directly correlates to what I eat. This continues to be proven by DetoxMay!!!

Green Smoothie

You might be wondering why I only write recipes for juices and smoothies, and if that's all I consume...Well, I'm here to tell you: I eat. A lot.

Here are a few staples in my diet as of recent.

Hummus
Black bean hummus homemade chips
Curry
Stir fries
Green smoothies
Eggplant pasta
Salsa
Guac
Big Salads
Teas
Lemon honey water
Horchata
Etc.,
Etc.,

*My "Detox" from a wide variety of foods. I'm on the Road to Recovery!

Intro:

Here I am, in the "prime" of my life, on an adventure and sooo ready to get healthy! I've created this blog to chronicle my efforts, thoughts, accomplishments, failures (if I admit to them), and possibly pictures if I'm brave enough in the future.

I'm going into this with the MINDSET that no one is reading, and hopefully I can keep up that way. Be forewarned, I may not censor, and sometimes I may seem downright mean. ;) Hey, it's who I am and I'm SICK of holding it in any longer! Truthfully, I'm the kindest, most caring and sympathetic person you'd ever know..but oftentimes have a difficult time showing what's really going on inside.

Thus, the blog is born!

I've been pretty bad at keeping up with previous blogs in the past, but I really want to make a strong effort to do this! Let's see what happens, shall we?