Dearest Family & Friends,
It as been a while since I have been able to send out a health update. Last
time I shared I has been struggling about a month. Well it is now the first
week of June and I have still not recovered after 4 months.
I started going to see more doctors to make sure my diagnosis was still
Epstein Barr / Chronic Fatigue and that there was nothing else going on. I
have had lots of blood work done, and MRI of my brain and I began seeing a
neurologist for the possibility of Multiple Sclerosis (MS). In the process
he ran some more involved blood test and I received a phone call yesterday
that I have been diagnosed with Lyme Disease.
I have been tested for Lyme disease multiple times since my symptoms first
started at age 15 but it has always come back negative. I have since found
out that labs are notorious for getting it wrong so I am thankful that this
doctor did a more extensive test and found it.
It is mixed emotions but mostly after 17 years of suffering with an illness
no one understood and could not do anything about I am relieved to have a
diagnosis with more clarity. All of my symptoms fall under the disease so it
makes me feel like I am not crazy and there really has been something very
wrong for a long time.
The bad thing is that I have gone undiagnosed for 17 years and the best way
to treat Lyme is to catch it within the first few months. According to my
symptoms I would be in stage 3 of the illness (there are only three stages)
which means the disease has effected several parts of my body and the doctor
suspects that it is in my neurological system.
So, the next step is for them to do a spinal tap on me in order to confirm
that the disease is in the neurological system and to also test for other
diseases with similar symptoms. They are also trying to fully rule out MS
and by doing the spinal tap and an MRI of my neck we should know for sure.
Right now the doctor feels optimistic since my brain scan came back clear of
legions. The spinal tap is on June 23rd at 11:00am if you can remember me in
prayer.
If the spinal tap confirms the Lyme disease is in the neurological system
they will start me on one month of daily IV antibiotics at home through a
pic line. I am hoping that will start no later than the first week of July.
Since Lyme disease is a bacteria they feel the antibiotic should kill it
and my symptoms should improve over time. Some doctors say it is necessary
for ongoing treatment other do not but with the length of time it has been
in my system I am not sure that one month will solve the problem. We will
see...
This is all very new to me and I still know very little but you know me...I
am already reading everything I can get my hands on. I am not changing
anything I have been doing regarding nutrition, exercise, etc.. as the most
important thing is to boost my immune system to fight the disease.
Please remember me in your prayers as my symptoms are still very bad. I
struggle most days to walk and have quite a bit of joint pain and stiffness
especially in my hips and neck. I am very week and struggle with my memory,
writing and speech at times. I have had a very difficult time breathing when
my body gets week and was rushed to the emergency room two weeks ago when it
got very bad. Still lots of fatigue and weakness and ironically I have also
had insomnia the past week so sleeping has been rough. My main concern is
still not being able to care for my children or my household without a lot
of assistance.
I know so many of you have been praying and I so feel and appreciate your
prayers. My husband, mom, family and friends have been amazing and have
carried me and my kids through this difficult season and I am so thankful
and blessed.
I know the recovery may still be long but there is new hope that there is a
light at the end of the tunnel. I will keep you informed as I know more.
Thank you again for your love and prayers!!!
Love,
Rebecca
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