Doctor's Visit 3/7/14

After I had my last class of the day Thursday evening, which lets out at 6:15, I hurried home to once again finish packing!  By this time I had found out that I had received a 93% on my Cognitive Psych test and couldn’t be happier.  I had literally screamed with excitement when I had received the email from my professor, what a great way to start my Spring break.  But, I still had to pack, which for the average person shouldn’t take a super long time; however when you are packing IV tubing, dressing change kits, heparin, saline, lactated ringers, 10 days worth of medication, and then clothes, it takes a long time.  I have to triple check every bag because I can’t buy heparin or a dressing change kit at the local convenience store in Florida.  Needless to say, traveling is very stressful for me, but by the time my Dad had come to pick me up at around 8pm I was ready to go.

After he questioned if I needed everything that I had packed, we loaded the car and hit the road for the three-hour drive home.  In the car my Dad told me some very exciting news, I found out that I was going to have my blood looked at by a microbiologist we know that owns a lab; he was going to be looking to see if there was still Lyme bacteria, any other bacteria, or just to see if there was anything else of concern.  My Dad had gone to talk to him on Wednesday because I had been off of Tigecycline for two weeks at that point and was not seeing the gains that I should have been seeing.  I still had severe neck/back pain, headaches, cognitive issues, and I was feeling very discouraged as were my parents.  My Dad informed me that before my Lyme’s doctor appointment we were going to stop by this man’s lab and have my blood drawn for him to look at.  It was very generous of him to agree to. 

We made it home before my sister got home from the airport, so I decided to wait up for it; I was too excited to see her!  Plus I knew that I was getting up super early in the morning to head to DC for the doctor, then after that my Dad and I were going to meet my Mom and sister somewhere off of 95 for them to hop in our vehicle for the road trip!  By the time Payton got home from the airport it was late, almost midnight, and she went right to bed.  She didn’t want to stay up and chat; I guess that is what road trips are for, at any rate it was nice to just see her.  I have been talking to her a lot but nothing makes up for seeing someone.

I didn’t sleep well, Thursday night even though I was exhausted; my guess is it was my nerves talking.  I was very anxious for my appointment with my Lyme doctor since I haven’t been feeling well.  After my Dad finished packing the car, he and I began the drive to the microbiologist’s lab to have my blood drawn.  I am very grateful that he was able to draw my blood because he also sat down and talked with my Dad and I for a solid twenty minutes about my situation.  He shared his opinions on long term antibiotics, which many people feel strongly against; a friend of his, who is a Lyme doctor, says if you do not respond to antibiotics within three months then you won’t respond at all.  He also said that Tigecycline kills everything in your body, so that it would be hard for many other bacteria to survive in my system at this point.  He thought that I need to let my system heal at this point and eat foods with lots of fiber such as swiss chard to naturally detox my system.  He then drew my blood from the arm that doesn’t have the picc line.  He said he would send the results of my blood test to my Lyme specialist and that it usually takes 24 hours, then another 48, and a final report is created at 72 hours.

After seeing him I sobbed hysterically, while being so grateful for him being willing to help me; I felt so defeated at the same time, talk about not knowing what to feel.  The rest of the car ride to D.C. I whimpered just not knowing what to feel, but feeling disappointed, feeling like my months of IV treatment were a waste.  Most people can’t imagine the frustration I feel when I am constantly asked when are you going to be better?, is Lyme disease curable?, how come I had Lyme disease and I was better in two weeks?,  how many more weeks of antibiotics do you have?.  I know many of my friends are only trying to help and usually they are doing the best of their abilities.  That doesn’t change the fact that sometimes I wish I could teach a class on the art of being a better friend to a chronically ill individual.  There are a lot of do’s and don’t that people should be aware of.  Here are two blog posts from two different bloggers that I think are useful in helping to describe how a Lyme patients feels and what they wish others knew about them:

http://lymelessandlovely.blogspot.com/2014/01/top-10-things-to-know-when-someone-in.html

http://todayifeelexceptionally.blogspot.com/2014/01/deceitful.html

 By the time I arrived on M street in D.C., I was exhausted and a little bit car sick.  I hate my Dad’s driving in D.C., it is very stop and go; I bet a person could end up with whip lash from that kind of driving.  After we parked in the parking garage, took the elevator to the 2^nd floor, and waited briefly in the waiting room, I was greeted by the new infusion nurse, Riley, who I had been conversing with in my patient portal for the past few weeks.  I must confess she was much older than I had been expecting; I had painted this whole picture in my head of this lady who was about 28 maybe.  Let’s say Riley was at least twenty years older than that, however she was very nice.  After Riley had taken my blood pressure lying down, sitting, and standing, and had taken my temperature, I was hoping I would be able to get a magnesium IV like I usually did.  She told me she had to ask Tara before she could even think to set anything up; I should have guessed that.  Of course my magnesium level this month was a 2.1 and the cut off for being able to have a magnesium IV was a 2.0 so I was unable to have a magnesium IV; instead I was offered a Meyer’s cocktail.  A Meyer’s cocktail consists of magnesium, B vitamins and vitamin C; it has many benefits and in hindsight is probably better for me than the magnesium when I look at the all around benefits. 

Meyer's cocktail

My doctor finally came in after I had decided to have my Meyer’s cocktail to discuss my symptoms and discuss how I had been since my last visit, which had been quite some time ago.  I hadn’t been to D.C. since before my sepsis infection in January and I had also completed another round of Tigecycline, plus had 2 and a half weeks off of antibiotics to detox the Tigecycline to see how my body would respond to being off of antibiotics.  Needless to say it had been some time since I had sat face to face and spoke to the doctor about my long list of symptoms.  As soon as we began speaking I began crying, I couldn’t hold it in.  I had too many concerns that I felt weren’t getting better for having completed as much intravenous antibiotic therapy as I had; my line was placed May 8^th.  Let me remind you that, I had a previous line that I did 5 months of straight intravenous antibiotic therapy with, so I have had my fair share of torture!  Okay maybe torture is an exaggeration, BUT long-term antibiotic treatment is not an exaggeration for me. 

I voiced my thoughts about my high ferritin levels, severe back/neck nerve pain, constant cracking of my hips, knee pain, inability to process material, how I misspell everything, how I say the wrong word in social context, headaches/migraines, not sleeping well, feelings of being overwhelmingly hot, poor memory, deep hopelessness, anxiety, and dizziness—blackouts.  I told the doctor that I felt like after 2 weeks my body began to crave antibiotics; I feared that I wasn't going to be able to ever go a long time without antibiotics.  When I say I craved antibiotics, I mean that my symptoms began to worsen, just for the record.  After I was finished my show, I was told I was too toxic to go back on antibiotics and I needed another 2-3 weeks off.  The doctors told me that they couldn’t keep hitting me with antibiotics if I had too much inflammation and no way too detox; the inflammation was evident by my high ferritin levels and high CRP. 

I asked for more ways to detox, actually I begged for different ways to detox because clearly the ways that I was detoxing were not working!  I asked if I had the choice between getting a massage, going to physical therapy or getting acupuncture done, which should I do, I was told without hesitation to go with acupuncture.  I must state I was pretty shocked because I would have thought massage, but really massages stir up everything and can actually do more damage in the long run.  If you are going to get a massage though I was told to get a lymphatic drainage, never a deep tissue.  Then, I was told to juice, which I already do because that is a great way to provide nutrients to the body.  I was also told to dapple in trying pinella, burbur, or parsley; I was told some patients have great success with these products while other patients have absolutely no success.  You can find these products at www.nutramedix.com

I was told my next protocol would begin in 2-3 weeks as I had said much to my disappointment.  It would be as follows:  

First week:

MWF: Omnicef 300mg (2) twice daily

           Rifabutin 150mg      twice daily

           Minocin   100mg     twice daily

Fri &Sat  Flagyl 500mg twice daily 

               Diflucan 100mg (2) once daily

Then second week 

MTW:Omnicef 300mg (2) twice daily

         Rifabutin 150mg      twice daily

         Cipro       500mg    twice daily

I was also given Tramadol 100mg ER to take as needed for pain, then for sleep I was given a script to try Remeron 15mg (2) at bedtime, or Restoril 15mg (1-2) & Atarax 25mg at bedtime and I was also told to try oil of oregano.  As you can imagine, lots to take in!  After my Meyer’s cocktail was finished, we were told that I would go through this antibiotic cycle 2-3 times then return and I guess that was that!  My Dad and I drove to meet my Mom and sister in Chevy Chase which was relatively close to my doctors but took forever to get to because of traffic.  By 3 the Erlemeier family road trip to Florida was beginning, but so was the 95 traffic! 

  

"Patience is not the ability to wait, but the ability to keep a good attitude while you wait."  

Week before Spring Break

College students, myself included, dread the week before spring break because all we see are dead lines with schoolwork.  This year was no different especially with four snow days thus far in the spring semester.  I had two snow days the week before spring break, which would seem picture perfect any other week.  This particularly week I had more deadlines than finals weeks, okay that was an exaggeration but you get the point.  I had two tests, a paper with an ambiguous topic, two phone calls, I had to run research participants, I had to drop off dog food for Kona, and I had to pack for spring break!  Usually I have a four-day week (no Fridays) but this week due to the snow I only had a two-day week, which left just Wednesday and Thursday.  I was going home Thursday night because I had my Lyme specialist on Friday at noon in DC; it made more sense for me to drive home, then drive to the doctors and then from there I was going to just go to Florida via 95.  Plus, my sister was flying in on Thursday night from Notre Dame and any added time to see my sister was a huge bonus because we never get to see each other anymore, but I must admit we are talking more on the phone.  In high school my sister and I were extremely close, I would drive her to school in the mornings when I got my license, but then when I went to Elon for my freshman year of college our relationship fell apart.  When we did speak, our conversations were surface based for all practical purposes they contained no meaning.  Now I feel like we are rebuilding our relationship, piece by piece; people weren't kidding when they said Rome wasn't built in a day, that is how I feel with our relationship.  

I completely wasted my Monday away; I couldn't even tell you what I did.  I think I slept most of the day and cleaned my room.  I was exhausted and my body ached; plus I felt very frazzled for some reason, perhaps because I had numerous deadlines this week and I had a snow day, which meant I was trapped in my house with my 3 other roommates.  Granted I love my roommates to death, but I have to get out every day.  I hate being stuck inside and there was the dreaded possibility that there would be another snow day the next day too!  If there was another snow day, that would mean there would be no Cognitive Psych review in class and we would be missing an important lecture before the test; I know she would put the information online, but it is not the same as an in class lecture.  To my dismay, there was another snow day, my roommates were ecstatic, all I saw was work piling up in my head and my throat was beginning to tighten when I received a text message from one of my roommates about free pancake day at Ihop.  I decided I had to get out of the house to be able to clear my head, then come back and begin my to-do list.  However, the day did not go as I had planned. 

By Tuesday night I realized I was not prepared at all for this little vacation to Florida or for any of my upcoming work due Thursday!  The most successful part of my day was going out to brunch with my roommates and friends to eat Ihop pancakes for St. Judes Hospital.  The place was packed, but completely worth it in my opinion.  I even saw my friend Brie there, which I was shocked that I was able to recognize anyone amongst the crowds of people.  I must admit I did enjoy my omelet and my stack of pancakes, but what I did not enjoy was the time I wasted waiting to be seated (over an hour) and then the time I wasted waiting for my food.

It does look kind of worth it, doesn't it?  Not the gluten part though :( !

My anxiety was growing rapidly after I returned home from Ihop and realized the time, but one thing that does make me smile when I am anxious about my to-do list or when I don’t feel well, is my family group chat on the iPhone.  Thank goodness my Dad got an Iphone or else he would be hating life right now with the amount of texts we send in the group chat now.  I do give my Mom props as she always knows how to make my sister and I laugh when we need it.  Here are two photos that I received during the week before Spring break; not only did I get a good chuckle, but my roommates did too!

Who wouldn't smile at Teddy (my dog from home) laying in my Dad's half of the bed ?

Clearly placed by my Mom

Teddy my dog from home

Come Wednesday I did not feel well at all.  I hadn’t been sleeping well, my muscles were contracting and I had nerve pain in my back/neck (pins and needles).  Plus recently I have been having pain when I breathe in; I feel the pain on the right side of my ribs and then I also feel pressure on my sternum.  Not that any time is the ideal time not to feel well, but this certainly was not the ideal time.  I began to panic and cry, when my body regresses to previous states before antibiotics I begin to feel like all of my cycles of antibiotics were worthless.  I got into this vicious thought process and then before I knew it, I had wasted a few hours; wasting a few hours then made me more anxious because I hadn’t even had time to study for my Cognitive Psych test, do laundry, or further write my paper on “What made me who I am”?  What makes me normal/abnormal?.  I quickly realized I had to get the ball rolling if I wanted to do well on my paper and my test; I threw a load of laundry in and started studying for my test because the paper was due Friday night by 9pm.  I knew that I didn’t want to take the paper home with me when I left on Thursday, but if worse came to worse I would do that because I needed to do well on my Cognitive Psych test. 

The worst thing a teacher can do is psych you out and tell you that in the past this is the test most people fail, this is precisely what my teacher did for my Cognitive Psych test.  With that being said, I did not allow that to affect my mentality too much; I still studied like I normally would have.  I had music on in the background and chewed my Orbit flavored mint gum, which I personally think helps me retain my information better.  I always chew gum when I study and then when I take a test I chew that same flavored gum to jot my memory, some say that doesn’t affect your memory at all, but it is actually scientifically proven to enhance your memory.

After finishing the test, I was in full panic mode, I thought I got a B and quite frankly I wanted an A.  Many people think that sounds selfish and greedy but you know what I work hard for my grades and I am not satisfied with B’s; I earn A’s.  The test is composed of 30 multiple-choice questions and there were a few multiple choice questions that I had to guess on; as you can imagine I was anxious about it.  I didn’t want to have to leave for break not knowing my grade, but my teacher reassured me that she was going to go have the tests graded and then she was going to email us our grades because the tests were scantron, which makes it easy on her. 

I hurried back to my house to write another page of my paper, trying to scan my head for ideas of what made me who I was because to be honest that was a loaded question to try to answer in 3-4 pages, right before spring break.  How would you define normal?  How would you define abnormal especially after being sick for seven years or actually how would you define abnormal in general?  I don’t like the terms normal or abnormal; in my opinion it is just another way for society to categorize people.  Here is an excerpt from my paper for my child psychopathology class:

Over the past seven years, while dealing with college, relationships, and jobs, I have also been struggling with my Lyme disease. On the outside, I look like any other blue-eyed, dirty blonde hair, social college student. Many people, including some of my closest friends, do not realize that I have shifted from the loud, outgoing extrovert to a quiet introvert. It pains me when I have to talk in front of others. These are all new developments as a result of my Lyme disease. I am now self-conscious and very susceptible to judgment. I am also always worried about how people will react to my choice of treatment of my Lyme disease. I chose a controversial method, as not much is known about it yet. I currently have a PICC line in my left arm that delivers antibiotics intravenously to my central nervous system. Most people, though, would not even notice my PICC at first glance; I hide it because I do not want it to handicap me. I struggled at first to find “normalcy” while living a life so unlike that of my peers, but I have learned how to adjust to life with it and realize how much benefit it adds to my health, which significantly outweighs the costs.  I may not be able to exercise the way I would like, swim, get my arm wet, etc, but I am not bedbound!  In addition, my close friends and family have been able to help me make light of the situation; in my family, we say I have a “Nemo” arm and it actually does make it something to smile about!  It is finding joy in the little things. 
I may not be able to control things that happen as a result of my Lyme disease, so I try to control what I can. I focus on my strengths and try to overcome my weaknesses. When I was at my sickest, my weakest, I would cry to my mom that I just wanted to be normal. She constantly reminded me that there is no “normal.” Everyone is different and unique in their own way; everyone has different strengths, values, and experiences. I have learned that we all want to fit in with the “status quo,” but being different is just as important. While I do not define myself as “normal” or, on the other hand, “abnormal,” I am still trying to find where I belong.  I try to let my values, my friends and my abilities define me. Since becoming sick, I have realized that everyone’s differences can be utilized in different ways to try to attain the highest level of personal success.  “Normal” and “abnormal” are our societies way of labeling people and then isolating them into their specific categories where some people are welcome and others are not.  I am not going to define myself in those terms; I would rather be defined by my values, my friends and my abilities. 

My childhood and the values that my parents instill in me radically shaped my life. Unfortunately my Lyme disease has also played a big role in my life, but I try not to let that negatively impact me. I have learned that if I can understand myself, how I view my strengths, my weaknesses, and myself, I can undertake any challenge. 

Quite an impactful excerpt if I do say so myself and on that note I will end this blog post.  Coming soon in the next post will be my doctor’s appointment, my trip to Florida and like always a little plot twist! 

 

P.S. I realized that I sound OCD when I talk about my grades needing to be A’s and how I am not satisfied with B’s, does anyone else have this symptom as a result of Lyme or coinfection?  I have heard of other people that have developed OCD; the doctor says it is not uncommon with Bartonella. 

“Don’t allow your wounds to turn you into a person you are not.”

New Tick-Bourne Disease Found!

"Tufts researchers show that in some cases, what looks like Lyme could be a completely different illness transmitted by the same bug."  Ticks are capable of more then what we think to be capable, please be careful!  Click the link to learn more about the other illnesses the tick can transmit in addition to what we know as Lyme disease!  


http://now.tufts.edu/articles/new-tick-borne-disease-found



"Hope, it is the only thing stronger than fear."

When you feel defeated...

Everyone has times when they begin to wonder why they have held on as long as they did, I am at that point.  This has been an extremely rough week and a half off of antibiotics; my body is not detoxing and I feel very toxic.  My pain seems to be worse off of antibiotics and that concerns me and makes me think that I will need antibiotics for the rest of my life.  I know that is an irrational thought, but sometimes it is hard to think rationally when I feel this way.

Does anyone else ever feel worse off of antibiotics?  If so, what do they do?

I found this quote and then edited it to give me a little project to distract me from worrying about other things.  All I can say is hang in there.  Things will get better.  I am speaking to everyone and myself.