Herx on!

I started my 200mg of Doxycycline for the treatment of Lyme Disease officially as of this past Saturday, November 16th.  Now keep in mind that i am a total baby and never had to really learn to swallow a pill up until now. But for some reason the impending doom of my failing health seemed to be a good enough motivator to grow a pair and go ahead and do it.

So here we are. I am an adult who can swallow pills.. YAY. And no one officially cares because i should have been doing this a long time ago.. 

So these past few days have been quite wonderful. So as i have mentioned in previous posts i am familiar with the Jarisch-Herxheimer reaction. To describe what this reaction is correctly i think it is best to refer to Lemon & Lyme's Blog post: 

"Chronic Lyme patients have to deal with the Jarisch-Herxheimer Reaction from antibiotics. The reaction is named after Adolf Jarisch and Karl Herxheimer who published descriptions of the reaction in 1895 and 1902, respectively (Rull).

For short, it's often referred to as "the JHR," "herxing," or "a herx." Not all patients will herx, it depends on the level of infection and the type of treatment, among other factors, but it's something to be aware of before beginning treatment. If not expecting it, a herx can be a terrifying and incredibly disorienting experience....Herxing occurs when dead or dying bacteria release large amounts of toxins into blood and tissues at an alarming rate. "This provokes a sudden and exaggerated inflammatory response" ("Herxheimer..."). Essentially, the body is attempting to eliminate the released toxins much faster than it is able to ("A Body...").The bacteria can also drill into the white blood cells and live inside. Killing these particular bacteria also results in the death of the host cell. The immune system releases the massive inflammatory response, and this will "cause a rise in symptoms in the area in which the bacteria are being killed"". 

Okay so i realize that wasn't the smallest passage. I am all too familiar with this from having manual lymph node drainage massages for a little over the past year or so. Personally when i Herx it feels like something like this:

When in actuality it looks more like this:

Fevers

Hot Sweats

Nausea 

Muscle Pain

Joint Pain

Headaches

Hypersensitivity to Light

Hypersensitivity to Sound

Hypersensitivity to Smells

Anxiety

Depression

Paranoia 

Muscle Weakness/Fatigue 

Mental Exhaustion

Cognitive Problems

Trouble Reading

Slowed Motor Function

Vertigo

Short Term Memory Loss

Tachycardia 

Heart Palpitations

Bloating

Bathroom Problems (Diarrhea -Constipation) 

Hallucinations

SOUND LIKE FUN YET?

The hardest part of all of this is that i look completely normal when the majority of this is happening. Which makes all of this that much harder constantly reminding people that although i may look well.. its not all what it seems.

Invisible diseases take their toll mentally, physically, psychologically. 

I am beat down, tired, nauseous, and tired tired tired... and to believe this is only the beginning of the beginning.

3/21 days down...

New Diagnosis New Life?

When someone has told me that they had an experience that "literally changed their life", i always found that hard to believe. I find that most events in my life that could have been considered that were always made into memories that occupied shelf space in the library of my brain while i putted through life. Occasionally looking back and reflecting. 

This past Friday was surely an exception and an experience that completely changed the way i look at the world and life in general. Its in my professional opinion that having the feeling of dying will do that to you.

I was admitted into Mass General Hospital after being out at a show and having heart complications. 

I was with one of my best friends and her two friends seeing Mackelmore and Ryan Lewis at the TD Garden. That day was no different than any other. I worked in the morning, took a nap, ate food and then was off to get ready to pick up my friend and head into boston to get our tickets for the show. 

When i got there i was relaxed, excited and relieved. I had a really rough work week and it was nice to finally catch up with a good friend and be at a show. I have always found my happy place to be at a show or in nature and usually a show is more accessible. 

We saw the two opening acts and then halfway through Mackelmore's set (right after he played Thrift Shop) my friend noticed i wasn't moving around. The whole night i was dancing and wiggling (i swear i can't NOT dance when i hear music). Now this is where my memories get really fuzzy so this is my knowledge of what happened hearing it from my friend. 

I stopped moving around and stood there really taken back and she said that if she didn't know me better i would have looked overwhelmed by the crowds and claustrophobic. She kept asking me if i was alright and i responded multiple times saying "i feel weird, i feel sick, something isn't right". She said "okay do you want to sit down" and i said yes and bolted out of the general admission area, through the bleachers into the hallway. A little back drop here... i am almost 5'10" and my friend is 5 foot nothing so when i walk fast or run this poor girl is booking it to keep up with me.. and when i panic i run REAL fast. Anyways so i get to the hallway and sit down and my body is shaking pretty violently. Not to the point where i think it was a seizure but something for sure was not right. I wasn't really responding to any questions they were asking and i don't even remember anyone asking me anything. The EMTs arrived and starting poking and prodding asking my friend questions, asking me questions and i start to come out of whatever it was. I felt like my heart was going to explode. It was beating so fast and hard that i literally thought it was going to jump straight out of my chest. 

A week prior to this i consulted with a cardiologist because i was having episodes of heart fluttering or feeling as if it had completely stopped. Now anyone who has had any issues with their heart can understand what i mean by i was scared for my life. Now having body aches and pains, stomach problems, orthopedic issues i can all handle but when there is something wrong with an organ that determines whether you live or die by its normal function.. thats a whole other story right there. 

Once again this part is pretty fuzzy but they gave me aspirin to take after taking some vitals and i couldn't even fully control my arm and the pills flung off the wall behind me. We tried again and finally got them in my mouth. I was taken by the stretcher to the ambulance and off to MGH we went. 

Side note: Why are ER nurses either the nicest people you have ever met or condescending bitches? I mean yes i am aware i got a heart monitor to watch for these episodes and NO i didn't use it. Oh i don't know when you're not fully conscious would you have been able to reach into your bag and do that? I don't think so either.

After seeing three doctors a slue of nurses and attendants i was taken for EKGs, chest x-rays, blood work and more blood work (they mixed up the tubes the first time around and conveniently forgot to mention this to me until i asked to leave three hours later...). They gave me a blood thinner and did another EKG and then put me on an IV drip. I sat there waiting for answers for hours. After a while i felt fine and wanted to go home. And if you have ever had to tell a nurse that you wont wait for them.. well thats a whole other level of sass right there. So my friend and i had left now it being the following morning. TO HAVE MY KEYS LOCKED IN MY CAR. My friends friend drove my car from TD Garden to MGH so we could pick it up after (which i am very appreciative of) but he didn't know my car is from the dinosaur ages and doesn't work normally. So after calling security to come open my car and several failed attempts later, it was finally unlocked and we were on the way home.

Later on that day i woke up at 3 or so after that shitty night i had and my chest was beyond sore. I was calling my cardiologist and primary care HOPING they weren't closed for Veterans day so i could see them ASAP to get some sort of answers from these tests. Nothing.. noting nothing nothing. 

Test after test didn't catch anything and i felt like shit and i was scared out of my mind. 

My primary took some blood and i pushed him to test me for Lymes disease because one of my friends has it and has simular issues and they were already going to run some other tests since the blood thinner and IV fluids would have messed up my previous results. 

and on Thursday i got the news. I have borrellia burgdoeferi (Lyme Disease), ehrlichiosis and babesia microti. 

So now to play the game good news bad news. 

Good: This may be a possible answer to all of my health issues

Bad: This may just be another empty diagnosis and treatment that leads to nothing changing.

Good: This may be the cause to the heart problems and after being treated it could all go away.

Bad: The medication is known to be super aggressive and make people very ill before seeing any improvement. (If you want to read about the special sort of hell i am going to put my body through over the next few weeks/months/year(s) please read this  )

Good:This is treatable and curable but it will take years for all side effects to go away.

Bad: Caught this years after i would have been infected so the complications and treatment are significantly higher.

Bad: Treatments by Lyme specialists are extremely expensive and not covered by insurance past the prescribed medication.

Well it seems i have more bad things to say about this diagnosis than good but i am pretty optimistic that this will make a change in the way i feel and the way my body behaves. 

For the time being i am taking it one day at a time and seeing how it goes. 

I start my first day of medication today (Saturday, November 16th, 2013) so i will be sure to keep everyone updated on that.