2016 – Year in Review


2016

Such a bad year!

Eleven (11)  Trips to the ER!

Since getting my implant for my migraines (7/18/13) I didn’t think I would ever have an illness that is as bad if not worse than having a migraine every day.  For 18 years with the migraines I lived in a dark room and threw up a lot.  I was always feeling sick.  I hid it well from my friends.  So now with my blog I am more vocal about how sick I am and have been.  To some people I know it may seem that I wasn’t this sick before I was diagnosed with Lyme but that’s not true.  I was sick every day.  I never felt good. I was never a zero on a scale of 1 to 10 (10 being the worst) of pain or just general overall feeling.

So here are some updates:  You can start at the bottom to begin my journey of 11 trips to the ER in 2016.  

ER Trips 9, 10 and 11  – nothing too exciting just never ending pain so I eventually go to the ER to get some relief.

October 28, 2016 (ER Trip #8)

Friday morning (1 am) was the 8th trip to the emergency room this year.  Well, really since May.  Once again – stomach bad.  Can’t wait to see my Lyme Doctor on Monday (Halloween) to get started on treatments for the parasites and whatever other stuff he wants me to do.  I was told by him on my first visit that I wasn’t supposed to do any treatments.  No Ozone, no herbs, nothing but my prescriptions and my Vitamin D.  Apparently, I’m too toxic!  Yikes!!  I tried to go back on Nortriptyline for pain (a daily medication) but had so many side effects that I had to stop.  I think my body isn’t functioning and working properly to get rid of toxins so I keep getting side effects.  I was on Nortriptyline in 2015 and stopped taking it thinking I didn’t need it but I really did need it and at the time I didn’t notice any side effects.  I definitely think my stomach has gotten worse even though some other symptoms have gotten better. I also think my liver isn’t processing like it’s should so I keep getting side effects.

October 19, 2016

Here I am up at 3 am.  Well, actually I never slept.  Bad migraine and body pain and I just couldn’t fall asleep.  I hate insomnia.  It’s 7am now and I’m ready for a nap!  LOL!  

October 14, 2016

Got the results from the parasite test today.  And YES I have 2 parasites in my gut.  YUCK!!   Here are the results:

  • Entamoeba hartmanni cysts (protozoa) – few
  • Giardia intestinalis cysts (protozoa) – few
  • Yeast organisms (fungi) – moderate amount

This doctor does give recommendations on how to get the parasites out of you but I am waiting until I see my Lyme Doctor November 2nd to get his advice on the right course of action.

And, I know where I got the parasites, well at least the Giardia.  Four years ago in the Dominican Republic.  Four years ago is when my intestinal problems started and just happen to get worse in May.  I sure 3 -4 months of antibiotics didn’t help either.  

My recommendation:  DO NOT GO TO THIRD WORLD COUNTRIES!  

It’s so gross to think I have living organisms in me.  It’s taking over my gut.  And I remember my stomach hurting the entire time I was there.  My sister and I ended up just eating rice and bread all week.  Horrible place to go.  We were so careful about drinking bottled water and even brushing our teeth with it but it was probably from food.  

October 7, 2016

I have now been in the emergency room 7 times since May for stomach problems.  I had so many test done and they all came back negative.

  1. Colonoscopy
  2. Endoscopy
  3. CT Scans – 3
  4. Ultrasound
  5. X-Ray
  6. EKG
  7. Gastric Emptying – to make sure the stomach is functioning correctly
  8. Hepatobiliary Iminodiacetic Acid (HIDA) scan – to make sure the Gallbladder is functioning correctly

So after test #1 and #2 came back normal the Nurse Practitioner GI specialist just thought I was too stressed and that I was making up this pain in my stomach.  She was horrible.  I am so glad my husband took me to that appointment because I was sobbing and couldn’t talk.  I was so mad because I was in so much pain and she acted like she had never seen me before even though she was the one that ordered test #1 and test #2.  It’s really his first time seeing how horrible medical professionals can treat me.  Shocking to him but the first think I said when we left was that this is how it’s been for me for 21 years.

A few days after seeing her we went to my pain doctor, who is amazing!  He was able to answer all our questions and direct me to a good GI MD.  

I have had the worst luck with Nurse Practitioners.  3 strikes their out!  3 bad ones in less than one year.  We have decided I can only see MD’s from now one.  

September 23, 2016

I switched to a new Lyme Doctor that also specialized in Mold illness.  Since we had mold at our house we have now gutted the master bathroom and had the mold mitigation work done.  I will do a final HERTSMI test to make sure it’s clear.  My new Lyme doctor isn’t convinced it’s mold making me sick because the HERTSMI test was pretty low but we knew will had damp walls so we had to open up and check things out.  Certain symptoms that were specifically mold related are gone.  I am now finally sleeping in my own bed and not a hotel or the guest room.  Feels good and soon we will have a new bathroom.  

My new Lyme Doctor as thought I needed to do another parasite test.  The first one I did months ago didn’t show any but he feels some tests can miss things.  Or maybe they didn’t really test for everything possible.  So I agreed to do the parasite test again.  It’s online and you can order it from Para Wellness Research

September 10, 2016 (ER Trip #7)

OMG!  Once again too much pain in my stomach and had to go back to the ER.

September 6, 2016

The evening after the colonoscopy and endoscopy I was once again doubled over in pain on the bathroom floor and had the go to the ER (ER Trip #6).  They took and X-ray to make sure nothing happened during the procedures.  Which there wasn’t but they got me out of pain.  

August 14, 2016 (ER Trip #5)

Once again doubled over in pain and back to the ER.  Nothing was figured out.

July 25, 2016

ER Trip #3 Another trip to the emergency room and ended up having an appendectomy.  WooHoo!  Such fun.  The pain was not anywhere near my appendix so the doctors were suprised it was mild appendicitis.  My pain was really high up on my stomach and into my chest but they said it was my appendix that needed to come out and I had surgery that night.  I had now time to process it and just did the surgery.

The hospital staff were AMAZING but the after care was HORRIBLE!  

I was told they went in 4 spots and had 4 white bandages on after surgery.  Then when I was allowed to shower and take the white bandages off there was nothing under one bandage.  Weird!  Then 3 days after surgery I saw the surgeon and forget to ask about he bandages because I literally saw him for 30 seconds.  The next day the steri strips came off and I noticed stitches.  Weird again!  No one told me I had stitches that had to be removed.  OMG!  Really?  That could have been in the discharge instructions and I could have been told at my post-op visit with the surgeon.  But NO!  They like to keep patients confused.  So my belly button starting bleeding so I went back the emergency room Friday, July 29, 2016 (ER Trip #4)where I had the surgery. And everything was fine and I said “By the way do these stitches dissolve?”  The Physican Assistant said no you have to get the taken out in 10-14 days.  Unbelievable!  

However, I thought that removing my appendix would solve all my stomach problems but nope.  That only created more questions because a couple of weeks after my surgery I received an addendum to my appendix pathology report that showed neoplasms.  Great!  Just mail it and not even call to tell me I should have a GI doctor check this out.  But I did have two GI specialists check it out and they are concerned because they can not tell if all of the bad cells were taken out.  OMG!  So now in 2 years I have to get a CT scan and ultrasound again to make sure there isn’t any more.   

May 26 and June 4, 2016

I was doubled over in pain on the bathroom floor in the middle of the night and had to go to the ER (2016 Trip #1).  I found out I have Colitis (inflamed colon) and was given Cipro (ciprofloxacin 500mg), an antibiotic to take for one week.  

Please use caution when deciding whether or not to take this medication.

I really didn’t want to take it but  felt pressured so I did and my primary care physician (PCP) said it looked like a super red donut.  I stopped taking it after 5 days because my stomach hurt so bad. The area on the left lower side where the colitis was was definitely better but the rest of my abdomen was killing me.  I emailed my PCP and he agreed and said to stop it.  I was also having sucidial thoughts, itching, jerking movements and bad shaking of my arms and legs.   

Then the stomach pain got really bad on Saturday June 4, 2016 (2016 Trip #2) so I went back to the emergency room.  They determined that I have Gastritis from the Cipro but the colitis was better.  DAMN IT! Never again will I take antibiotics.  I regretted it from the first pill I took. I knew it would set me back.