Sunday, March 29, 2015

Lets Talk About Herxing

You know somebody who is in treatment for Chronic Late Stage Lyme Disease.

I'm sure you also, at this point, recognize that in order to eradicate the Lyme bacteria they have to either take antibiotics, go the all natural route with herbal remedies, or do a combination, like myself. Long term, NOT short term.


They HERX!

There is an actual definition for what a herx is, so this isn't something we crazy ass Lyme people fabricate. Here is the wiki definition

When I say herxing, people are clueless

In short, a herx is the dying bacteria in your body, these bacteria release endotoxins as they die. Because this happens so rapidly after taking antibiotics, your ability to rid your body of the toxins quickly, is near impossible.  The Lyme bacteria cell wall is where the endotoxins get released from, the more bacteria you kill, the more toxins are released.  This causes an inflammatory response within the body, so your current symptoms are exaggerated, and you basically feel like you are dying.   My herx reactions in the beginning of treatment weren't that bad, I'd have some muscle pain, twitching, and fatigue.  That is until Biaxin, Flagyl and Bicillin injections were combined and now I'm at a whole new level of herxing.  This is a good thing though, this means that the bacteria are dying!  We want this, it's how I know that I am on the right track.

On top of the herxing, you also have side effects of the antibiotics, and I'm talking mainly about the fatigue that comes with taking massive quantities of antibiotics, not the um, other stuff.  I'm pumped up on this shit and I stand at 5'0'' and 105 pounds, it takes me anywhere from a few days to a few weeks to adjust to my new meds.  By adjusting, I mean less fatigue and overall symptoms of the antibiotics. You must keep at them! There are times I want to stop, but I pull my Becky powers out and fight through it. The antibiotic fatigue mixed with herxing, feels like you're sleep walking through life, my conversations with people are reduced to a few sentences, with some words switched around.  Let's put it this way, most of my conversations with strangers usually end really awkwardly, I get the impression most people think I've been day drinking.

Sometimes herxing can be extreme, very deadly and can end in hospital visits.  They may look something like this.
If you'd like to watch more, just You Tube "Lyme Disease and Herxing"

My antibiotic treatment has only begun to be somewhat aggressive.  Since starting Bicillin injections I have herxing about 2-3 days after the shots.  My main symptoms seem to get much worse during a herx.

My first IM Bicillin injection herx
I have severe muscle pain in my upper back and neck, this is what usually causes me to roll around on the floor.  I go from bed, to floor, to foam roller, then back to bed, there are usually tears and heating pads involved.  I also have muscles twitching all over my body, ringing in my ears and headaches.  Because my Bicillin injections are slow releasing and randomly administered throughout the week, I have now begun to have these herx reactions at work...and you guessed it, I work through it.
My neck pain :/

Since starting more of the hard core medications my brain symptoms have gotten worse, particularly during a herx or when I'm really exhausted.  I have disorientation while driving, confusion, can't form words, slur my speech, short term memory loss, inability to make some decisions...this one is hard because i'll be 100% confident in my decision one day, then the next completely change my mind.  This is on-going and very hard for myself and others around me to understand.  Bicillin injections are supposed to be very helpful in breaking the blood brain barrier and clearing up brain issues.

So what do I do in order to rid the toxins out of my body and help my herxes.
-lemon water
-epsom salt baths & baking soda
-anything to cleanse the liver
-stretching  and rolling my muscles

When I'm herxing at work
-lemon water lemon water lemon water
-milk thistle liquid extract in water
-Liquid chlorophyll in water
-assistance when lifting heavy things, like weights :)

If you want to understand how a day in the life of a Lymie feels, we can look at things on a scale range of 1-10.  10 is great, 1 is shitty.

A great day for a healthy person should feel like a 10
A great day for me feels like a 6, on this day I can do some physical exercise, go out with friends, maybe finish some sentences.
A bad day for me feels like a 3, I cannot do physical exercise nor do I want to be around people.
A herxing day for me feels like a 1,  it's hard to talk, walk and be alive.
Every single day is different and every single hour is different when you have Lyme.  You never know what you're gonna get!

The last time I had a 10 day was over 5 years ago.  I'll know I'm free of Lyme when I get my 10 day again :)

Below are some 10 days, just before I got infected....Can't wait to feel that good again.

In Maine, doing a lil hike

With Rach, in Seattle, watching an Indians game

Watch this movie.

Thursday, March 19, 2015

Laugh Instead of Cry

I haven't written in a while, I've been going through a lot of changes in my life, outside of having Lyme Disease.  Life is like a play right now, I'm on stage, but also watching myself as an audience member.  It's like I'm bringing life to the character I've spent months studying, and the play just repeats itself, daily, weekly, monthly.

I am certainly realizing the complexity of this illness and the extent to which it effects my brain and body. Going into treatment, I was naive, and I find myself struggling to come to terms with the fact that I am unable to do the things I once did, so easily.  It's super hard for me to admit, but some days it's exhausting to go to the grocery store, cook dinner for myself, run around to pharmacies, picking up prescriptions, and work a four hour shift. There is little, to no energy for much physical activity, which is devastating to me. There are some good days thrown in the mix, energetic ones, you may find me outdoors walking, out with friends, or writing.

With so many challenges on a day to day basis, how do Lyme sufferers manage to move forward?   We continue to push to the next day, with anticipation of having a better one than the day before.  We look at our small improvements and have hope that large ones are right around the corner.  I have so far, relied on the knowledge that I am not alone in this fight, and the positive energy from others to help me get through my days.  Fellow lymies, who have reached out to offer suggestions and answers to my questions have been beyond helpful.   We suffer so much physical and emotional pain, even the people closest to us have no idea what is going on, despite our efforts of explaining.  There are no words to describe what it's like to speak with someone who is going through Lyme Disease and treatment.  They understand, not just the physical symptoms but the complete helplessness and desperation we feel regarding this illness.  We are fighting a battle with doctors, the government, the CDC, insurance companies, and our own bodies every single day.  We want nothing more than to be healthy and feel better, but we have next to nobody helping us.

Today, I picked up ten injections of Bicillin, a prescription at the pharmacy that I paid $949 dollars for, WITH a pharmacy discount.   When the pharmacist told me the price, I laughed and kept laughing.  The way a person laughs when they are in the middle of a work out and things begin to get really challenging.  If laughter didn't come out it would have been tears, this disease gets no help.  I will most likely be doing these injections 2x a week for more than a few months.  You do the math. This frustration eats away the positive I need to get better.  How does one remain hopeful when you feel like you are snowboarding on a mountain with no snow?  Oh, and you know where those injections are going, right into the muscle baby.

Leaning on others, perhaps?  Friends are very helpful right now, the people who have stood by me through all of this.  The ones who try to understand the scope of this illness, will forever have a huge chunk of my heart.  The friends who have reached out, cooked dinner for me, offered me their home, donations, ears, time, and love. These people mean the world to me and I could not do any of this without you.   I'm lucky to have amazing co-workers who surround me with their positive energy all day.  The owner and friend, of the company I work for, allows me whatever hours I need and my co-workers step in, when I can't physically work all the hours I set out to.  I'm happy to have each and every one of you in my life right now, in whatever way you are helping me out, it means the world to me!

This illness has a way of making me feel so small in the universe, I mean, I already stand at just 5'0".  ;)

All I can really do is take my anger and frustration, laugh instead of cry, and use it to try to spread awareness, so people like myself can get the appropriate treatment in order to get well.  In the process, I can hopefully help people better understand Lyme Disease.

There has been a Lyme Disease Challenge going around the internet in order to raise awareness for Lyme and gain research funds.  Below is the link of my video taking a bite out of Lyme.

Thanks guys!

Here is my updated treatment video #3  This discusses my current protocol.

If you still do not understand why people like myself have to pay out of pocket to get better, watch this video.

If you'd like to help me pay for some Bicillin shots!  Here is the link to do so.

Thank You, Thank You