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 21st
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 1st, 2nd, and 3rd
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 2nd, 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 3rd it was kind
of a repeat of the 2nd 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 4th,
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 4th
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."
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