Babesia attack!

Sorry it has been so long since my last blog post!  I do miss blogging, so I am going to try to give you the most thorough update on my life now that school is back in full swing, but it may be very brief.

Since September 20^th, 2013 I have been on an intense protocol of:

-IV Cipro in the morning for the first two weeks M,W,F

-IV Azithromycin at night for the first two weeks M, W, F

-Mepron 2 tsp twice daily for the first two weeks M, W, F

- Septra DS 1 tab twice daily for the first two weeks M, W, F

- Artemisinin 800mg twice daily for the first two weeks M, W, F

- Lactoferrin and Xylitol first 8 days of antibiotics

-Flagyl twice daily on the second week just Thursday and Friday

-BUT then CoArten twice daily on M,T, W of my third week

And I am finally on my 10 days off.  I am exhausted mentally, physically, emotionally.  Being at school has taken a tremendous toll on me and my parents in addition to others have suggested I take next semester off because it is almost unrealistic that I am at school from time to time.   Luckily I do not have to make a decision right now.

I went home the last weekend in September to go to the cardiologist, where I found out I have mitral valve prolapse.  This could be where I get increased anxiety, I met Mandy Hughes from the documentary Under Our Skin the last weekend of September and she looked amazing.  She is no longer on antibiotics and she is currently a nurse at Hopkins, meeting her may have saved my life.  She was able to point out all of my current symptoms just from looking at me, she could tell I twitch and was fidgety, my balance is off, my central nervous system was going crazy, my speech was delayed, and the list is endless.  She restored my hope.  I cannot reiterate enough that she looked amazing; here is a picture of us below:

Inspiration 

The hope only lasted so long when I began to truly regress cognitively, be in more physical pain, and barely be able to keep food down.  I had to fight with all of my will power for two hours after I took my antibiotics to ensure that my pills would be effective.  I remember calling a good friend of mine Wednesday night the second week of that protocol at 12:30ish sobbing asking her if it was okay if I didn’t take my oral antibiotics because I was going to throw up from the IV.  She comforted me until I began puking my guts out; I saw her that weekend at a PAL event Partners Against Lyme at George Mason University and she commented, as did everyone else on how much weight I had lost. 

Beautiful Lyme Ladies

My doctor was the keynote speaker at the event, so after I asked him to feel my neck because my ear was killing me and I was going to go to Urgent Care on Monday if he didn’t think it was too much of a concern, but he agreed to and as he pressed on my neck and hit this one spot he told me the nerves of my carotid artery were inflamed causing the ear pain.  I have had this ear infection like pain since June!!! It drives me crazy and as you can imagine cold, rainy weather doesn’t make it much better.  The good news is he saved me a trip to the doctors that I didn’t need and I met amazing people at this forum that were very similar to me. 

The protocol was vicious in general but especially with CoArtem; I did not react well to that by any means.  I had very vivid dreams, heightened anxiety, a hot burning skin rash and so much more.  As a whole I still have a lot of neurological problems such as dyslexic like issues, severe memory impairment, hand malfunctions, muscle aches, nerve pain in my back and head, headaches, chest pain, air hunger, nausea, chest pain, anxiety, just to name a few but I do know that it does get worse significantly worse before you get better. 

I went back to the doctors on Friday and I am sticking with the same protocol because my Babesia symptoms aren’t going away which is concerning.  The only difference was that on the same days I take Flagyl I am going to add Diflucan; oh the joys!  My body was treating 50 degree weather as if it were 25 degree weather; I can’t regulate my body temperature at all and my blood pressure has been super low at the doctor’s office it was 82/47.  I did IV magnesium while in the office and am going to start juicing or shall I say making as many green smoothies as I can to bring myself back to life!  In addition, I have been doing IV iron, which I think was the only way I made it through this protocol because it restored some of my fatigue; I hope I can do more of it. 

Now for the good things that have happened in my life, I was accepted for field placement for the spring of 2014.  It was a competitive process that at first I had to submit an essay then I had be chosen for an interview then I had to be accepted to the actual field placement after everyone has been interviewed and considered.  I also went to the tattoo shop that I want to have my tattoo done at and I got it stenciled on, it gave me something to look forward to.  I took a ton of photos!  Once again I am sorry for not writing in forever!

“Every test in our life makes us bitter or better, every problem comes to break us or make us.  The chose is ours whether we become victim or victor.”  

School has Officially Started

Wow it really has been a long time since I have blogged and I apologize for that!  I hate the saying when did life become so hectic, that you no longer have time for the things you enjoy.  I have a flexible school load, but I always find myself accepting other little projects because I am such a curious person.  I can’t stand being sick and having to watch from the sidelines.  Most weekends I have to watch from the sidelines, but when it comes to school that is one area I do not have to watch from the sideline because I can push myself; where as with alcohol I really can’t. 

Anyways, the first two weeks of that protocol were pretty viscous.  I had no appetite at all and most smells made me want to throw up, I only actually threw up a few times because I know how important it is to keep that medicine down.  I think that may be the hardest part battling the urge to throw up with knowing that the pills have to be absorbed first.  I also felt very “high” this protocol or shall I say spacey.  It is as though I am in my own world and no one is in there with me.  It is an isolating feeling; I continue to reach out to all of my Lymies but none of them are here with me experiencing college with me.  In addition, I am very misunderstood because of how emotional I can become at any given point during the day; my little Lyme spirochete and who knows where the coinfections are, are located in my Limbic system, in my brain.  I do become extremely angry or extremely upset and cry over little things that do not matter; sometimes I am actually crying for something that is bothering me and I just overreacting to something else.  I still have a lot of the same symptoms so I am not going to bore you with them, but the bruising seems to be getting worse, which is of a concern.  I also had a new symptom develop swallowing is becoming hard.  I don’t know what that means….  If someone such as touches me I bruise; I couldn’t handle physical therapy.  It was harming me not doing me good.

AND I STILL HAVE THE EAR INFECTION!!!! What is this!  It is not a joke; I guess I will hear what they have to say when I go back in a week and a half.  Now that I am on my off week, I am sleeping ridiculous amounts of sleep and feel terrible.  I am also catching a cold.  It makes me think that I need antibiotics all the time because I have been off antibiotics for 4 days and I am already catching something, how crazy is that!  The one thing that kills me is the one thing that I need; that sounds something a drug user would say.

Here is this weeks lab work: 

 

I don't like the neutrophils being so low and the EOS levels and the lymph levels for that matter! 

Some of the highlights that have taken place since my previous blog post:

My cousin/roommate turned 21, so me and the other 2 roommates got dressed up to the extent where we were wearing wigs and went to a restaurant that had giant fishbowl drinks so that she could celebrate being 21 the right way.  Although I did not drink, I did enjoy celebrating with her on her special birthday and dressing up!

The Roommates outside of the house

 Me and the Birthday girl

Next highlight was that a professor confronted me after class and asked if I wanted to be part of her lab team because I seemed as though I was prepared every day, very engaged, and motivated to be there.  I was completely flattered especially having to deal with everything I deal with.  I met with her today and I signed on to help out just as a 1 credit course this semester and hopefully more next semester, but I could really only devote 1 credit this semester.  She wants people to savor their time at James Madison and not rush around from place to place.  For example, she wants people to watch sunsets, go to Reddish Knob, hike at Old Rag, and notice more around them.  She says that freshman get to JMU and they are so excited to be here and then my middle of sophomore year it wears off and they go into an automatic mode where they stop noticing the little things and then when graduation comes they are crying wondering why they never did any of the things on the JMU bucket list or noticed the sunset from the balcony of their apartment.  Needless, to say I am excited for this! 

Lastly, I spoke to Linda.  There aren’t enough words to say how relieved I am just for that phone call.  It meant the world to me; she is at a dr. in Martha’s Vineyard that is finally giving her the answers she has needed for years and is making improvements.  I have tears rolling down my cheeks just thinking about Linda and her improvements that she is making there and just the fact that she is getting answers.  She needed this so badly, when she left I thought she was going to pass away.  I was afraid I was going to lose one of the most important people in my life, my Harrisonburg mom the one that understands me.  I honestly don’t know what I would have done. 

“The only limits in life are the ones you make.”

Neurological Symptoms of Lyme Disease

The neurological symptoms of Lyme Disease can be frightening and maddening when they first occur.  I know for me  the worst neurological symptom out of this list is the overly sensitive hearing and then the next one would be sensitivity to light.  The hearing sensitivity can quite literally send me into rage, which is scary for those around me.   It is crazy how just a tick bite can do that to a person!  Does anyone else have these neurological sensations/symptoms?  This link is the link for the hearing sensitivity, but if you look on the website there a ton more neurological symptoms including things having to do with ears, eyes, touch, etc.  



http://www.tiredoflyme.com

Then go to articles
Next go to physical symptoms
Then click on Bizarre Hearing Symptoms of Lyme Disease 

This website has a lot of knowledgeable information that could be useful for Lymies, but I particularly found this article relevant to my situation.  



"When the root is deep....there is no reason to fear the wind."

What Comes Next?

This illness is sucking the living day lights out of me; I have never felt so depleted and lifeless in my entire life.  I just hope and pray that I get better soon.  I don’t have a ton of time so I am just going to give you a few brief updates on my life. 

You know how they say when you are at the lowest point in your life that you turn to God well I went to church about a week and a half ago and I can’t say that I hated it.  I actually felt comfortable there.  It was an unusual, but welcoming feeling.  I am going to go back. 

In addition, on the 20^th my arm with the PICC line in it had swollen and my instant reaction was to go to the ER to see if I had a blood clot because last time there were two blood clots.  They did run a Doppler ultrasound on my arm, an X-ray on my chest to make sure the PICC was in place and EKG because I was having chest pain, but all “appeared” normal the doctor in the ER declared.  He did say it was swollen but that could have just been from overuse and I am very good about not overusing my right arm so I was very surprised to hear that, but anyways ya know the drill! 

Then I went to my LLMD on the 23^rd, which was an exciting visit because I did not have my parents for the first time and instead I had my friend Taylor with me.  I had a list of concerns a mile long, not even an exaggeration.  Her main concerns were the blood in my urine, the ear infection that I have had all summer (which she thinks my body is not recognizing as an infection because there are more important things that need to be addressed), my Babesia symptoms, losing weight, not sleeping well, and pain radiating from my spine.  So, she kept me on the same protocol but added Bactrim for the ear infection.

Here is the protocol:

Week 1 + 2

            M,W,F : Lactoferrin 500 mg 1 daily and Xylitol 4 tsp once daily (8 days only)

·      Merrem 1g IV twice daily

·      Clindamycin 900 mg twice daily

·      Bactrim 1tab twice daily

·      Mepron 2 tsp twice daily

·      Artemisinin 200mg (4) twice daily

·      DURING WEEK TWO à FLAGYL 500 mg TWICE DAILY on Thursday and Friday

Week 3+4 OFF WEEKS

This is only my antibiotic regiment.  She increased my Ativan at bedtime to one full tab to help with nightmares that are frequent with this protocol and to help me sleep better overall.  Then she also increased my Neurontin to 900mg in the morning/ 300mg midday/ 1200mg pm to help with all of the pain radiating from my spine plus my “absent” seizures.  I am also going to begin dosing Marinol in the morning as well in an attempt to increase my appetite.  I never thought I would have the problem where I would not want food, but I am literally at this point eating to live not living to eat.  I only can taste spicy and all of my taste buds are thrown off.  Everything tastes so different and I just don’t want it; I push it away from me.  In addition, she recommended that I upped my Trazodone dose to 150mg, but I tried that and it gave me a MAJOR hangover effect in the morning so I think I will stick to 100mg.  Has anyone else ever had that affect with Trazodone?  Lastly for the ear infection I was given Astelin nasal spray to try and open my Eustachian tubes, so we will see how that goes!  Wish me luck!  Life is always full of surprises. 

Now enough talk about doctors, time for a funny story so I had this goal before the end of summer to do a split and I finally was able to do it!!!! For about a second when I heard a crack on my left side and of course I pulled my adductor maximus according to my physical therapist.  But I still was able to do it!!! I know I am crazy, but I did my end of the summer goal and that proved to me that I can do anything I put my mind to.  That may not be the best example but still. 

In a previous post I have mentioned my friend Linda being very sick and not having a ton of options left, well I saw her yesterday.  We ran into each other randomly she was in the car and I saw her husband first then I saw her, just lying in the car…looking weaker then ever.  I hopped out of my car even though it was not in a place where I should have just hopped out of my car it was kind of in the middle of the road, but I did not care I just knew I had to do this.  She slowly began to get out of the car and as soon as she saw me she began to cry then I began to sob.  No words had been spoken at this point it was just holding each other and sobbing.  Her husband had stepped a good distance away because it was scary.  We did that for a little while then she told me she was going to Vassar to drop Clancy her son off at college.  “She was being a Mom.”  But what happens after that is what I wonder.  I am scared to death.  I had never seen her so weak; I think of her as my Harrisonburg Mom and can’t imagine her not in my life.  And that solidified a lot of me.  I am asking anyone and everyone that reads this blog to please pray for her.

I feel like I never know what to expect anymore, things just keep catching me off guard. 

“Please don’t judge me, You don’t know what it took for me to get out of bed, look as presentable as possible, face the day & face the world.  You know nothing of my daily struggle.”   

The Entrenched Fight

Scratching on the walls that compose my body,

From the inside out

Pounding on the walls hoping someone will save me,

Just one person.

Year after year the fight becomes more entrenched in my soul.

Meanwhile my soul begs to be freed.

How much longer?

That is the question that longs to be answered,

I need answered as I pant, sob,

And lose my mind,

Do I even have much more time?

-Jamie


"Every test in our life makes us bitter or better, every problem comes to break us or make us.  The choice is ours to become VICTOR or VICTIM!