LYME RAGE

With Lyme disease you are used to hearing about fatigue, muscle pain, and joint pain, etc.  But do you know what you are not used to hearing about, and is probably one of the most frustrating, underestimated symptoms in my opinion… LYME RAGE.  For me, anger can come out of anywhere for any reason or no reason at all; a small event could have me engulfed with rage and can ruin my entire day.  My dogs barking can trigger me and often do especially when I am having a very symptomatic day.  Dogs barking shouldn’t send me into a full day of rage, but some days it does.  Lyme rage causes me to use colorful language to get my point across, to cry, to scream, to want to drive like a maniac, and sometimes to even want to throw things!  When I feel angry and down I begin to pull away from my friends because it is just easier than having people see me or deal with me like this.  I would be mortified for anyone to see me the way I have been acting. 

Over the past few days I have been using very colorful language, crying, and sometimes raising my voice because I just snap.  It makes me feel crazy; I hate snapping because I know it isn’t me, it is the disease but that isn’t an excuse.  I was interrupted tonight while reading and just because I was in the middle of the page before the end of the chapter, I freaked out and became enraged!  I feel extreme guilt for how I act, but I just can’t control it in the moment or even for a few hours after; it takes me awhile to cool down.  I just keep seeming to further isolate myself because it is easier than dealing with people even my own family.  I just put headphones in therefore and try to focus in on the music playing.  I deactivated my Facebook a few days ago to stop comparing my life to other peoples.  I grow more depressed every time I am able to read about my friend’s internships or summer jobs because I wish so desperately that, that could be me.   

I also have a high stress day tomorrow, which I am anxious about.  My sister is graduating from high school and we are having a huge graduation party at our house.  It is weird to me that she is graduating and I do not think it will hit me until tomorrow when I watch her ceremony.  The part that I am anxious for is going back to our school and seeing a lot of teachers and students that I was not fond of.  I was undiagnosed until my senior year, so high school was not the best experience for me and I do not want to be reminded of that by seeing everyone or the school.  Also, I hate when all her friends who have siblings who graduated with me ask me what I am doing this summer and those sort of questions because I never know how to answer that!  I hate getting into an in depth Lyme conversation with people I haven’t seen in years.  Then, I am also nervous for having that many people at our house; I will have nowhere to escape to.  That is a lot of walking around, greeting people, being on my “best behavior”, a lot of noise stimulation, and all while not feeling well.  Maybe I’ll feel better than I did today, I sure as hell hope.  Today I was very symptomatic--> joint pains, frontal headache, chest hurts to touch, calf pain, right side of my body is so nervy, hand tremors 

That leads me to my next point….I have a new protocol!  I saw the doctor the other day and I am mixing things up!  

Week 1: HELL WEEK

MWF: Rifabutin 150mg twice daily

            Merrem 1gm IV once daily

            Cipro 400 mg IV once daily

M-F:     Daraprim 25mg 2 once daily

            Leucovorin 10mg once daily

            Septra DS 1 ½ tab twice daily

            Artemisinin 200mg (4) twice daily

Saturday only:

            Flagyl 500mg twice daily

            Diflucan 200mg once daily

Week 2:

M-F:

            Merrem 1g IV twice daily

            Cipro 400g IV twice daily

Week 3:

            M, T, W:

                        CoArtem 20/120 4 tabs twice daily

Week 4: OFF

“To Do List”

-Start CoQ10

-Start ALA

-Increase Neurontin 900mg at night for 5 days, then increase to 900mg twice daily

-Increase Zonegran 100mg in am for 5 days then increase to 100mg twice daily

-Discontinue the Mobic

-Ativan .5mg 2-3 times a day

-Biotin shampoo

-B12 injections

-Marinol for sound sensitivity too (not just sleep, pain, and nausea)

I start this protocol the week of June 17^th, so I am anxious but ready to get going, but happy to have another off week.  I will continue to keep everyone updated on what is going on!

“Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.”