New Friend

This week’s treatment of antibiotics was much different than last weeks.  It was not near as harsh because I was not on oral antibiotics in addition to the intravenous antibiotics.  With that being said, my LLMD did increase the IV antibiotics to Merrem and Cirpro in the morning, and then AGAIN at night too, so I was infusing two antibiotics twice a day.  Infusing twice a day has not been near as intense on my digestive system as the previous weak; granted there have been times where I have been nauseous but no vomiting. 

In addition, I have noticed that I have lost my sense of taste!  I went to the dentist on Monday and apparently my back taste buds are severely inflamed and that is a direct side effect of my antibiotics.   Food just doesn’t seem appetizing to me at all; I have had to mentally force feed myself.  My go to comfort foods has been fruit and rice cakes with peanut butter and jelly. 

Also, this week my headaches, fatigue, irritability, depression, isolated nerve and muscular pain have increased.  I had to withdrawal from one of my online summer courses that I was taking to try to keep myself busy and I am still recovering from the immense guilty and feelings of failure that I feel.  I have also just felt sensitive in general even when people go to give me ahead it just doesn’t feel good sometimes.  Often times when I am alone I find myself in crying spats just getting out my frustration towards this disease, which motivates to want to get better and to succeed.

*The best part of my entire week was meeting a kid a year younger than me, who goes to Virginia Tech and has Lyme disease and a coinfection.  He happens to also see the same doctor as me!  He is not near as far into the process as me nor has he been sick as many years, but I have never been able to talk to someone my age in person that knew exactly what I was going through.  We talked for two and a half hours at Starbucks from topics ranging from different symptoms, antibiotic protocols, management of symptoms, relationships, how to describe what we have to our friends, our families, our futures, and most importantly HOPE!  I left feeling hopeful for the first time in awhile because I was not alone; I knew I wasn’t alone before from reading online articles and talking to people on the phone and even knowing adults, but it is truly different when the person is in your age group!  The crazy thing about his family is his Dad has Lyme with a coinfection and his sister as well!  His Dad is very sick and just got a port inserted two days ago to begin IV therapy, so I am sure I will be hearing from this new Lyme friend!

Another week completed and now next week I have 3 days of CoArtem, which attacks the coinfection Babesia.  I am not even taking other antibiotics with CoArtem because it is so powerful!  The second week of my protocols are usually hard mentally for me and then the third week of my protocols are usually hard physically from what I have been able to observe, therefore this shall be interesting!  Last time I took this antibiotic I felt out of this world; I felt as if I were from another planet and couldn’t communicate with anyone.  I was so worn down and fatigued; everything hurt too.  I was not even on as intense of a protocol as I was given this time, but being back at home instead of at school and having minimal stress will be helpful! 

Anyways I will keep everyone updated on what the future holds for me, until then I hope everyone is spraying with Off to protect themselves against ticks and still checking for ticks after being outside!

“You have to fight through some bad days to earn the best days of your life.”

I Want To Live

I am tired of being in survival mode and constantly fighting for my life; I just want to be 21.

"It feels like everyone else is moving on with their lives while I am stuck here in this hole that I can't climb out of."

1st Hell Week of Antibotics DONE!

I survived yesterday in my protocol, which consisted of Diflucan and Flagyl to attack the Lyme cysts and then the yeast.  Nothing intravenously.  I was absolutely miserable, and my mind was attacking me.  After I posted yesterday’s blog post, I had to go to Lab Corp to get my weekly labs drawn and this was the absolute last day I could have my blood drawn during my 1^st antibiotic week.  The doctors like to monitor all of my red blood cells, white blood cells, kidney functions, liver functions, etc which I do appreciate, but yesterday I really did not think I was going to make it to LabCorp.  Every time I stood up from lying down, I would feel like I was going to pass out and my face was very pale.  I was determined though; I was going to make it the 20 minutes to LabCorp to have my blood drawn and I did.  I even had to wait when I got there because everyone goes on Saturdays since there isn’t work for many people it is most convenient.  I just couldn’t tolerate the noise of a crying baby in there, so luckily I didn’t have to wait too too long.  I also noticed myself getting out of breath easily which makes me feel like those around me must think I am so out of shape or am a smoker or something! 

After I had my blood drawn my Grandmother had called me back and said if I felt up to it she could come down and take me out for lunch.  I knew I was feeling entirely too weak for visitors, but had she not come down I anticipated lying on the couch not eating and getting weaker.  My body was just ached and the nerve pain that I felt on my right side was unthinkable.  Plus I had a headache of magnitude proportions, but I took some Baclofen and Zofran to try to help with some of my pain and nausea when I got home and told my Grandmother that lunch would be nice. 

I laid around until she got here watching Remember the Titans, one of my favorite movies, and then we discussed where we would go for lunch.  I just wanted to go somewhere close because I was not dressed for anywhere remotely nice; I was in yoga pants and a T-shirt and was in significant pain.  We decided on a restaurant about 2 miles from my house.  I was able to eat about 1/3 of my salad with grilled chicken on it; I was mentally talking to myself hoping I would not throw up because I was feeling so nauseous.  I succeeded though, I did not throw up but I did feel extremely nauseous so when I came I waited the appropriate time and after my Grandmother had left I took Phenergran.  It seemed to help; I have also been drinking lots and lots of water!

I hate watching movies, because there are so many better ways to spend your time plus I just get ancy, but being sick what else is there to do!!! So, I rented the movie Side Effects on Amazon movies à which I do NOT recommend by any means, it will only make you more depressed and cause your mind to over think.  Essentially after forty minutes or so I had to stop watching it because I felt so depressed and ended up reflecting on my own life and started to cry.  A good cry always does help you sleep though!  I ended up falling asleep for an hour and a half so I can’t really complain.  Then, when I woke up I rented the movie Identity Thief, which was funny.  Dumb funny.  It had that woman from Bridesmaids in it; I did have a good laugh from it.  Then before I knew it around 7ish my family was home from their vacation and around 8:30 I tried to eat frozen yogurt with fruit, but I couldn’t even finish it because my stomach was just rejecting all the dairy.  Oh well!  At least I was able to get in some of the berries and some of the apples!  Nutrients is nutrients and I will take what I can get.  And for an added bonus I even slept for awhile last night after Baclofen, Xanax, Trazadone, and the Marinol.  Good news though--> FIRST HELL WEEK SURVIVED

“You don’t know pain until you’re staring at yourself in the mirror with tears streaming down your face and you’re begging yourself to just hold on and be strong.  That is pain.”  

Let it Storm!

Sorry! I have not blogged recently things have been very chaotic and I tried to overextend myself in the past few weeks!

First, I had my sister’s prom, my Lyme doctor appointment, and graduation all in one week.  But, as if I couldn’t handle more I volunteered to babysit too, while taking a core psychology class online and please do not forget I have a PICC line in my arm!  Luckily this was an off week of antibiotics and I should have been resting and relaxing, but instead I was stressing it out.  Needless to say after this week my body did some detoxing of it’s own and on Friday night of that week I randomly started throwing up.  I think that was my body’s way of getting rid of the toxins, not only the Lyme toxins but also the emotional toxins.  I am just glad that was after my sister’s graduation party because I enough drama as it is. 

I had intended to get back to Harrisonburg, where I prefer to reside but the family asked me to babysit again because they had yet to find someone to babysit that they were comfortable with.  I agreed knowing that it would practically kill me with two new summer classes starting and the kids being out of school so now full days with them!  But, I agreed realizing how much I strive for perfection and looking back now, it by no means helped me.  Yes, I did form a special bond with the daughter and love some of the activities we did.  But some of the days I would come home and be so drained, with a piercing headache and just have so much work that it would make anyone go mad: I remember one night I didn’t get home until 6:40 and I just had to take Vicodin for my headache and went to bed at 9:15. 

That week I was also dealing with an ear infection, swollen glands, pain to the right of my breast bone, severe headaches in the frontal lobe and then also at the base of my neck, joint paint, and severe nerve/muscular pain.  I had a lot of storms and rain come through my area this week and my symptoms were flaring.  Also, the combination of schoolwork, babysitting and Lyme that week had made me extremely snappy and irritable.  If someone remotely interrupted me while I was doing my homework to ask me a question I would scream at them.  In addition, I had a baseline EKG done for my doctor and she has yet to interpret it so I will keep you updated on the results. 

Week of June 17^th

Thank god the family I babysit for found a permanent nanny because there is no way I could have babysit.  This week has been hell.  My family went away to Myrtle Beach, SC; I chose not to go.  First of all, it’s a beach and I can’t get my PICC wet or sandy, so why would I go to a beach.  But more importantly, I knew my protocol this week was going to be vicious and I prefer to be alone when I am like this because I know I am mean to people when I am going through pain.  If it were just pain this time I would have considered myself lucky!  I have kept most people especially my family in the dark about this so they don’t worry; everyone is constantly worrying about me.  I am 21; I should be able to take care of myself and handle everything for myself, which I have been for the most part. 

On Monday I still felt good; in my head I was kind of mocking everyone that told me that this was going to be harsh.  I was thinking they clearly do not know me, but by Thursday night I was thinking I clearly do not know what the fuck I am dealing with.  I have never been more nauseous, had more diarrhea, been in more pain, than I have been in the past few day.  I have even thrown up a handful of times.  I cannot find any food that looks remotely appetizing to me and as soon as I do try to eat I have to fight for my life to keep it down and fight the nausea, which is probably one of the hardest things I do all day.  I didn’t even leave the house yesterday and I only left the house on Tuesday to have dinner with someone because I knew I had to get out of the house.  Also, my hands have been so shaky, that was a random thought I just needed to throw in there. 

In addition, the medicine as it is detoxing the Lyme out of your body, plays games with your mind.  It makes me feel anxious, depressed, and so angry.  I find myself looking at other people’s lives, my good friend’s lives, whom I love, and getting jealous to the point of anger, an unhealthy emotion.  I will find myself crying over what feels like the loss of my youth (the good years).  I have become so anxious, that I am not sleeping as well as I had been, but that could also be attributed to pain.  I did poorly on two of my exams yesterday and I literally crumbled.  I hysterically sobbed for about 30 minutes in fetal position on hardwood floor; I study all day every day.  I take perfect notes, had I been healthy with a quick thinking mind I do not think this would have happened but who knows.  I can’t think like that, that is what kills people, their own mind. 

Ending thoughts to throw in there:

I started glutathione pushes into my IV and I have had 2 so far.  I have also started doing B12 shots again.  I had been doing them for the past few days and they would just leave small bruises.  I did one yesterday and somehow this is what it looks like:  

Furthermore, my heart rate has been higher than my top number of my blood pressure, which I think is also something of interest, to note and that was at two different times!  Everytime I got up I felt like I was crashing, but I knew I had to do it for my dogs or to go to the bathroom or to get more water or to even eat in general.  Taking care of my dogs was probably the most difficult task because they would want to go in and out, in and out all day and I could not get up that frequently.  But somehow I managed!                I refuse to sink.

        

"And once the storm is over, 

you won't remember how you made it through,

and how you managed to survive.

You won't even be sure, in fact

whether the storm is really over.

But one thing is certain.

When you come out of the storm,

you won't be the same person who walked in.

That's what the storm's all about. "

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.”

21st Birthday!

Sorry it has been a few weeks since an update on my life, but things have been a bit chaotic!  Let me see what I can fill you in on!

I was at James Madison staying at my apartment trying to get back into a healthy routine since every time I am home I seem to get derailed and that is not healthy for anyoneà neither my family nor me.  James Madison during the summer is interesting it is a lot more relaxed and the students drink a lot more because for the most part students are only taking one class so it is a giant party.  I am taking a class right now but it is online and it is a 6-week class compared to a 4 week Maymester class.

I was in a great routine I was going to the library during the day to do class work, which I love doing; it helps to keep my mind distracted!  Then, I was walking outside almost every day except 2.  The air is fresher there then in Baltimore and there is always someone that is down to walk there.  I walked endless miles one day and became super dehydrated and had to do 2 lactated ringers because I was too wiped out.  My thighs were screaming and I was beyond lethargic.  It was 11:00 and I felt as though I couldn’t form sentences.  I told my cousin I felt bad but my brain was done for the day; it is times like those that I am embarrassed.  I was stuttering, confusing words, but my head couldn’t think.  How do I explain that to people?  I can’t even explain that to myself. 

I also got a call from my doctor’s office that my magnesium levels are concerningly low.  The doctor would like my magnesium levels to be around 5 and the previous level was 4.8, which was great, then they dropped to 2.2 and they wanted to know if I changed anything in my protocol which I hadn’t!  Anytime the doctor calls me I become paranoid I always want to know what caused the level to change, etc.  But, they said I needed to start on 1250 of magnesium malate twice a day asap, so I ordered it.  It is bazaar because I take a lot of magnesium citrate, but anyways it is what it is and I am switching! 

In addition, I switched my sleep medicine because I thought my other sleep medicine was causing me to gain weight and I was not having that.  I am very in tune to an increase appetite so I just had to stop it because I would become very depressed if I started to gain weight.  I switched from Remeron to Trazadone 50-100mg for sleep and it is a miracle the improvement in my sleep.  I have been sleeping 10.5/11 hours!  I love it and it is a deep sleep that my body needs, but the concern my parents and I have is that I was on this before and it lowered my blood pressure too much to the point that I would pass out and hit my head and have to go to the hospital because I would have a concussion.  So, as you can see this is a major concern, but at the same time I love sleeping and getting sleep, what a change this is!!!!

What a week it has been!  I saw my ex unexpectedly and I think it was a really good thing, but it just mixes my emotions.  We are friends, good friends.  He had to deposit a check in Harrisonburg and wanted to meet for coffee to catch up and we ended up talking for 2 and a half hours.  We came to the conclusion that we both seemed like we are doing so great.  I think it shocked him how well I was doing this summer, for the first time in awhile I am really focusing on my health and myself and it has been paying off.  Seeing him is always emotionally exhausting because we have so many good memories together and so many emotions come flooding back every time we see each other even though we have been broken up for 6 months.  But, I was glad we saw each other, really glad. 

I turned 21 and survived!  I am blessed, truly blessed for great friends.  My cousin made me the cutest birthday gift ever; I love her!  She made me two canvases with quotes on it, a picture frame with a picture of the two of us in it, a margarita glass in it, vodka gummi bears, a candle, all in a little basket!  One of the quotes on the canvases was, “I love unmade beds.  I love when people are drunk and crying and cannot be anything but honest in that moment.  I love the look in the eyes when they realize they’re in love.  I love the way people look when they first wake up and they’ve forgotten their surroundings.  I love when people close their eyes and drift to somewhere in the clouds.  I fall in love with people and their honest moment all the time.  I fall in love with their breakdowns and their smeared makeup and their daydreams.  Honesty is just too beautiful to ever put into words.”  That is me too a tee!  I love people and their breakdowns and their honesty; people are always breaking down with me and I love it.  I wouldn’t have it any other way. 

I debated drinking on my 21^st birthday for the past month; my doctor did not want me to, but on my doctor note home it said use good judgment not do not drink, so I drank!  I don’t think it was worth it, do you hear that Lymies, NOT WORTH IT!  My birthday is 24 hours long so I drank 2 nights in a row and definitely not worth it.  The first night was great I went to a bar and got a fishbowl margarita with some friends and even had 2 shots!  After, I streaked the quad at my college, which was a thrilling and memorable experience for my 21^st birthday!  That is something that has been on my bucket list for a while.  I did that with my cousin and roommate, the second time we did it there was a cop and we had to run around to find my other roommate who was driving!  It was wild, but very memorable. 

That morning when I woke up I actually felt decent surprisingly and I did a lactated ringer and sunbathed on my cousins deck!  People think me having the lactated ringer is cheating for hydration after drinking J  But, then I drank again that night and I went hard again!  One of my really good friends from high school came to visit me for my birthday and bought her really good friend from college and I could not have been more grateful to see that friend; she is very special to me.  I think I also drank more because this friend was here and I was in the moment and just feeling good, but let me tell you I regretted it!  I drank all liquor since I do not drink beer because of gluten and carbonation and the next morning I was in significant pain.  My body could not tolerate liquor well alcohol in general I should say.  I was in pain, especially my legs and my right calf was so nervy.  I was lying in bed and I just called my Mom and was almost drawn to tears to tell you the truth that is how severe the pain was.  I wasn’t “hungover” so to speak; I was “Lymeover”.  They are different, my body was very Lymie and just angry with me.  I was also very depressed and I found myself berating myself mentally for everything going on in my life and every decision I had recently made.  I just realized this was not worth it.  If this was what drinking did to me, not worth it.  So, lessoned learned.  

This is my off week of antibiotics; lets see how I do!  I go back to the doctors on Wednesday, when I will get a completely new protocol.  I must admit I am nervous.  My current symptoms include: 

-chest pain

-air hunger

-severe leg pain

-fatigue easily

-headaches severe (sometimes blinding and light sensitive)

-nerve pain right side specific

-right calf pain (that is pressurized, weird I know)

-back pain and pain at the base of my neck

-shooting pain in back

-sometimes my hands go numb

-had weird pain upper left quadrant only happened twice but it was very severe

-knee and hip pain

-knees swelling

-memory is definitely getting worse (short term memory)

-zoning out (mini seizures)

-dizziness

-disorientation

-very low blood pressure

-vision issues

-thinning hair (hair is really falling out!)

-right hand tremors

-temperature regulation problems

-sound sensitivity


"Do the best you can until you know better.  Then when you know better, do better."