Update in 21 Year Old Lymeland

Just your average update in a 21 year old’s Lymeland.  Things have been all over the place; I may say that often but it is the truth!  I blogged a little less than a week ago when I met Austin for the first time, which I could not be more grateful for, we haven’t spoken again since because I don’t want to overwhelm the only Lyme friend I have met my age.  I am going to text him today probably to check in and ask if he wants to get together this week and do something; I just do not want to come off as overbearing or a know it all.  He is taking the approach of listen strictly to the doctor and not really researches on his own much about his symptoms or anything like that.  The more he learns about this disease through his Dad I think he will begin researching on his own!  But I can tell he is a fighter I see it in his eyes; it gives me hope and strength.  He met me on such a good day that I think he thinks got a very different impression of me then I give off usually or maybe I think differently of myself mentally.  My friend Linda told me meeting him was my 21^st birthday gift and in a strange spiritual way I believe it. 

Anyways now for the update on myself, I did a very strong antibiotic called CoArtem on July 1^st, 2^nd, and 3^rd that is known for treating Malaria and for Babesia because it resembles Malaria and for its harsh side effects.  I have cut and pasted some facts from the FDA information website on CoArtem so that people reading this can have an idea of what this drug does to people that are highly sensitive systems.  I have lost most of my appetite as well as my sense of taste and people observe that as trying to lose weight or something like that, but I am not hungry I am not realizing hunger cues.  I think I am experiencing, “anorexia of infection is part of the acute phase response (APR) to infection.”  Anorexia the word itself does not mean an eating disorder it means a decrease sensation of appetite, just for the record not to scare anyone! 

These are the reactions for CoArtem:

Serious Adverse Reactions

The following serious and otherwise important adverse reactions are discussed in greater detail in other sections of labeling:

•                Hypersensitivity Reactions [see Contraindications (4.1) and Postmarketing Experience (6.3)].

Hypersensitivity for someone who already has hypersensitity to the maximum degree is not a good combintionà I was very irritable with sounds, lots of screaming and having to turn my computer of phone up to maximum sound to block out other sounds around me just to function.  My parents were afraid I would go deaf; they would try to tell me to turn it down, but I don’t think I could stand to be around anyone if I tried to turn it down.

I also realized I do not think I like certain materials touching my body; a lot of people my age love wearing jeans and other clothing similar and I absolutely hate it!  Quite frankly I hate clothes in general, but I do realize it is kind of a necessity.  When I am home alone and know that no one is coming back for a while I will definitely not wear any clothes and same goes for my apartment at home.  I don’t know if that is a Lyme correlation though although some people have claimed it is! 

Here are the side effects that go with CoArtem and now I completely understand why I only take it for 3 days and why I do not take any other antibiotics with it not even intravenous antibiotics. 

Table 1: Adverse Reactions Occurring in 3% or More of Adult Patients Treated in Clinical Trials with the 6-dose Regimen of Coartem Tablets

System Organ Class	Preferred Term	Adults* N=647 (%)
Nervous system disorders	Headache	360 (56)
	Dizziness	253 (39)
Metabolism and nutrition disorders	Anorexia	260 (40)
General disorders and administration site conditions	Asthenia	243 (38)
	Pyrexia	159 (25)
	Chills	147 (23)
	Fatigue	111 (17)
	Malaise	20 (3)
Musculoskeletal and connective tissue disorders	Arthralgia	219 (34)
	Myalgia	206 (32)
Gastrointestinal disorders	Nausea	169 (26)
	Vomiting	113 (17)
	Abdominal pain	112 (17)
	Diarrhea	46 (7)
Psychiatric disorders	Sleep disorder	144 (22)
	Insomnia	32 (5)
Cardiac disorders	Palpitations	115 (18)
Hepatobiliary disorders	Hepatomegaly	59 (9)
Blood and lymphatic system disorders	Splenomegaly	57 (9)
	Anemia	23 (4)
Respiratory, thoracic and mediastinal disorders	Cough	37 (6)
Skin and subcutaneous tissue disorders	Pruritus	24 (4)
	Rash	21 (3)
Ear and labyrinth disorders	Vertigo	21 (3)
Infections and infestations	Malaria	18 (3)
	Nasopharyngitis	17 (3)

Now I can actually talk about my week with CoArtem!  First day I felt pretty good I hung out with my friend Heather, who has a month old baby, and hanging out with the two of them brings me a lot of joy.  What made it so nice was that she picked me up from my hous so that I didn’t have to drive; we went shopping for Stevie her baby!  I am teaching him to call me Aunt Jamie J, I know he is still too young but Heather and I are very good friends and I want him to grow up knowing me as an Aunt.  The few hours of shopping exhausted me probably because it was rainy as well and I just ached all over.  More pain than I had felt the previous week.  My second week was much better than I had expected pain wise.  Being with Heather and Stevie was a great distraction, but I came home and sobbed for two hours just sobbed in my bed by my self.  That was one of the lowest points I had felt in weeks; my mind was playing games with me.  I should have taken a Xanax but I always think I am stronger than I am and never want to rely on prescription medication to calm me down, but looking back now I also wasn’t trying to do deep breathing or yoga to calm me down.  I was literally hyperventilating in my bed and allowing it to get worse.  I didn’t even reach out to anyone to comfort me.  I allowed myself to hyperventilate and cry to sleep; but I didn’t sleep much unfortunately.  Then luckily my good friend Jacie called me to check in and see how I was handling treatment in general and it was a lifesaver, little did she know.  I was honest with her and told her how I was really doing and feeling; I told her I felt like giving up and I didn’t want to do it anymore.  I felt guilt for being a burden on everyone’s lives and tired of wasting my parent’s money.  I kept breaking down on the phone, but she was so accepting way more than I was expecting and it was such a relief.  I felt a sense of relief after the phone call that night I did not sleep well just I haven’t been sleeping a lot recently.  I do not wake up in the middle night, which is great, but just not many hours I am estimating probably 6 or 7 hours. 

On the 2^nd, I sat in a coffee shop to try and do a bunch of work for my online developmental psychology class that I am taking and I experienced tremors in both hands around 1 and then around 3:35 I experienced the most excruciating leg nerve pain I have ever felt in my left calve, that caused me to make a noise out loud because I had my headphones in and didn’t really realize.  The people around me were staring; it took my breath away for a good few seconds and I had to take deep breaths then I packed up my stuff and had to get home before anything else happened.  I just went up to my room because I did notice that also my sound sensitivity has been growing stronger so it was easier not to deal with anything and just deal with my pain on my own in my room and that is just what I did.  There were more storms on this day too and I do not know if that was a contributing factor, but it was bad and also another not goodnights sleep; just still not a lot of hours.  And my mom and I had gotten into an argument about past lab results that were over a year old right before bed so that probably did not help and her instant way of dealing with me is take an Ativan; I do not think they were interpreted correctly. 

Also, that morning I had a therapy session over the phone with my therapist from Harrisonburg and it went well but it was a cry session I felt like and there is only so much you can cry before it is unhealthy.  Every time I am alone which is increasing I cry.  I sob; I asked her when that unhealthy line was; I know I am severely depressed but still I am just getting worried I know I contacting my support friends now like Laurie and Belinda but still.  I guess we will see; I am going to meet with her in person next Friday and I will have a more accurate answer I hope! 

On the 3^rd it was kind of a repeat of the 2^nd some crying maybe lots who knows, lots of studying in the coffee shop all day, some pain, and a long walk outside with a friend. 

Last dose of CoArtem, so liberating that I felt the need to take a picture!

Then on the 4^th, I went to the urgent care for having an earache in my right ear, I knew it was an ear infection but I needed documentation of it so I knew what to report to my LLMD (Lyme Literate MD).  I get there and have my blood pressure taken and it was 76/59 with a pulse of 93!  Yikes!  

The woman who took it I could tell was a bit nervous to even be around me after seeing numbers that low she took me back to a room immediately and told me someone would be with me shortly.  A woman comes in and begins questioning me about my blood pressure and is very concerned, I tell her that I am just in hear for my ear and would like it if she just looked in my ear told me if I had an infection or not and I would be on my way.  She wanted to call 911 and have me sent in an ambulance to the hospital because this was just too dangerous and I was a liability at this point!  Long story short, I had to call my Mom to come drive me home; she did look in my ears eventually and I had so much wax build up so she had to flush it out!  Then, did find an ear infection in my right ear and gave me a prescription for Amoxicillin in addition to an antibiotic ear drop to try and really clear this up!  Happy 4^th of July!  Although I was able to see fireworks and enjoy a great meal with my grandparents and my family cooked by my Mom, so it did turn out well!

Here are a few updates on lab work:

This is my blood work from 6/20/13

Lab work from the next week June 27, 2013

Notice the significant increase in EOS and decrease in Neutrophils.  I do not have any symptoms of allergies which is interesting to notice.  I am going back to Harrisonburg next week to take care of a few things and I think that will be nice to get away and be by myself but around people.

"You may have to fight a battle more than once to win it."