Monday, March 21, 2016

Drug Interactions, Toxicity & Side Effects

I'm writing from my bed, the place I've been for the last few days. 

Obviously when I'm near death I don't change my clothes, you'll see.  & It's kind of creepy I look 12 in this photo.

Apparently Minocycline and I don't get along very well and I had to find that out the hard way.  It all noticeably started Wednesday with some odd muscle pain. I didn't think too much of it, I always have muscle pain, so I passed it off as post workout soreness. There were other warning signs though, that I should have listened to but I was so excited to have energy since getting off Levaquin that I disregarded them.  Thursday night I had a blast and by Friday my breathing was extremely shallow and I was wheezing at every breath.  In order for me to be able to breathe, by mid afternoon I had to lay down and try to sleep.  It was pretty scary and I probably should have called my doctor right away but I couldn't really speak. At that point I assumed it was Bactrim causing the problems, because I had only just added that in 5 days prior.  So I kept taking Minocycline only in the mornings until I could contact my LL...

By Saturday, my breathing was still off but I was able to meet an old roommate passing through town during the day, (one I hadn't seen in 18 years) and hung out with several different friends until about 9pm.  Shortly after, it all went to hell.  I had radiating pain in my mid back that shot to my shoulders, legs, and arms randomly.  My head ached and I could get air through what felt to be a tiny straw.  My instincts told me something was very wrong, but I still was not connecting it to the Minocycline!  I did not see how I could be reacting to a drug so similar to Doxy, which I had taken multiple times during my treatment.  Things continued to progress to the point that I found myself curled in a ball, on my bed crying in pain.  So I contacted a friend who I had been with for a bit during the day and told her to leave her phone on and if things got worse we'd have to go to the ER.  She suggested I pop some pain meds and luckily I did because I was able to stop the tears and get some sleep.

Wright State Univ Roomie

Most people probably would have gone to the ER but you have to understand when you have Lyme and are getting treatment for it, this stuff happens all the time. All of these things run through your head...

1.  Am I truly dying?  Because I have felt like I was dying hundreds of times due to Lyme, and I'm still alive. This is usually why I never end up at the ER.

2.  Is this a Herx I am having?  Are lots of bacteria going down right now?!  I always hope it's this one.

3.  Is this some other life threatening event that has nothing to do with Lyme (has yet to have nothing to do with Lyme)?

4.  Could this be a toxic reaction to my meds and can I not metabolize them?

5.  Do I need an Epi?  Am I  allergic to my meds? Toxic reaction and allergic reactions are different, I feel. Simply because some just cannot genetically metabolize certain drugs.  Which I happen to find so very interesting!  Here is a great article about genetics and medication.

People, I am not exaggerating!  The sickest I have ever been was when I contracted Lyme and it spread through my entire nervous system.  At the time I didn't know it was from Lyme but I was bedridden for a week, had my first migraine, flu, muscle aches, and pain everywhere!  And this was a close number 2.  I actually contemplated if I had gotten reinfected with Lyme! Although I did not have the flu and I was actually hungry while feeling like I was dying.  That's something that doesn't normally happen.  Weird.

Let's change the subject and talk about my last visit to my LL, a few weeks ago!  The word remission was used!   It kind of startles me that I've felt like ass since November and we're talking remission.  But I know that I've been more sick from my meds and not my Lyme.  In fact I don't even really know what I feel like because the abx seem to be really messing with me as of late.

My LL thinks we may be able to get me off abx in August!  I still have Bartonella and we are still working on ridding it in my eyes.  I was told that I may never be able to get rid of it in my eyes... but this girl is gonna fight till I die to get this crap out of my eyes.  There is no way to live with it!  It is ridiculously painful and annoying.

The word remission scares me.  I realize that I have to start excepting that Lyme is something I will always have.  The hope is that your own immune system can keep it at bay.  The realization that it is a remission I will be going into and not a recovery hit me pretty hard, especially coming from my doctor.  It's just something that I have to work at coming to terms with.

More details in my YouTube video!

But overall I'm getting better!!  Although sometimes it's hard to see in a haze of drug interactions, toxicity, and side effects.

p.s my doctor again says I'm getting better because my diet and the fact that I am on abx.  I was also told I will have to eat my wonderful Lyme diet FOREVER!  But I knew that already.
-dairy free
-gluten free
-grain free
-sugar free
-allergen free  (hopefully some of my allergies to foods have diminished some, I'll try to add some back in soon)
-I think that's all

Thanks for reading!!!!!!!! Happy Spring!

Thursday, March 3, 2016

The No Title Post

I'm pondering what keeps me going and how others with chronic illness keep moving forward.

What inside led me to follow my instinct by visiting several doctors, demanding tests and refusing multiple diagnoses for 4 years?  What is the fire that persuades those with chronic illness to disregard what they are being told by professionals and search for the truth?  I'll never forget the feeling, seeing a new doctor for the first time, he walked through the door and the first thing he said to me, "What's a healthy girl like you doing here?"  I was ridiculously ill, but I guess I didn't appear that way to Mr. doctor.  I pleaded with him to test me for Lyme disease and he eventually caved. He tested with the ELISA test that came back negative, like it does for all Lyme patients without a new infection.  Later I had to endure, "I told you it wasn't Lyme."  Why did I pursue further testing to find my answer?

What makes me get up in the morning and fight through my symptoms and go to work? Why are my workouts so intense every single day that they end with me lying on the floor, with parts of my body that have completely given out?  I can't explain the burning in my brain and body that pushes me to total exhaustion but I can try.  Some fight for their children, family, and career.  I don't have that.

What I have is a broken Becky and all I can try to do is fix her.  That's my life, every single day. I've been in terrible parts of my brain, felt extremely isolated and lonely, have had more pain than I would ever wish on anybody, and I've only moved forward from my breaking point.  Setbacks are real and they happen regularly.  I still pretend to be okay when I'm not, and quite frankly I'm not sure if I see an endpoint to this hell but with all that said, my stride is still a continuous forward movement.

I give props to anybody that has fought through an illness or disease.  I get it.  For me working hard isn't an option anymore, it's a gift. I've seen improvements, some days more so than others!  I get up and go to work extremely fatigued and pumped up on more antibiotics than my body can handle right now because I remember the times I struggled to get through days from exhaustion and pain;  hiding my misery from others and scared because I didn't understand why I felt sick.

My workouts are as intense as I can make them because I've spent years with crippling muscle pain. It was just a few months ago that riding a bike indoors made me dizzy and sick and walking was the only form of exercise I knew for months. Even when walking I felt my knees could give out at any moment.  I work hard because there were days I couldn't get out of bed and taking my body for granted is not an option I feel comfortable with.  Same goes for my brain, just months ago my brain was so messed up I couldn't speak, drive, read, or process information well. There is no alternative than to teach myself things I never thought capable of learning.

There is something to be said for the person who battles with an invisible and incurable disease on a daily basis.  You too are the reason I still fight, because I am not alone. My strength will give you strength and our strength will change to world.

I cannot give up.  The fire inside only leads me to believe that there is a plan for me in this life. I am destined to do amazing things.

I cannot wait to see my doctor today!  My medicine needs to be switched and I have this intense feeling of lets do this!  Put an IV in my arm, a power port in my heart, I will bring it with me where I go. Whatever needs to be done, let's knock this shit out.  Let's do this because I can't take this recent bout of fatigue that has been going on for far too long!

P.s. from my last post...My heart is OK! EKG turned out normal.
Also, I've also got Smith blood, my dad's fighting cancer like a beast!

Thanks for reading.