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:
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 2nd 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 8th. 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."
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