Wednesday, October 26, 2011

Went to see Dr. P.  Monday, what a long day.  By the time you drive an hour, see the doc for 45 minutes each and then drive another hour home.

He didnt make many changes.. He did add Flagyl to my meds and sending Pat for some extra Blood Work.

I dont remember if I mentioned this in my first post about me.. but my husband (Pat) also has chronic Lyme and we also have Co-Infection Babesia.

Sunday, October 23, 2011

Pity Party??

I dont know what's going on with me??  I have had the worst month!!  Really does feel like a pity party.
Feels like Im getting sicker and sicker!  Feel Like I dont have a Real Friend on this Earth!  So stinking lonely..
Feel like Im watching my hubby lay on the couch or bed 23 hours a day in a slow agonizing death.. the same death I feel coming over me.. How do you get out of this hole when you feel so horrible all the time??  How do you other Lymies that are pretty much home bound in horrible pain and such severe fatigue do this??  Please tell me how?  I have always had a positive outlook, tried my best to help others, prayed and Loved God..
But I feel like Im slowly loosing it...  ;-(    We see the LLMD tomorrow.. hope he can help us more.

Sunday, October 9, 2011

My Blog

As I figured, I'm not doing a very good job keeping up with this blog..  I really wanted to do a good job on it so that it would do two things.
1. Help me remember what all has happened as far as how I'm doing, whats going on, what changes  have taken place and so on.  and..
2. Help others understand what goes on in the life of people with chronic intracellular Lyme disease and babesia infections..

Now I can try to recall.. about a month ago the doc increased my IV antibiotic from 2000mg to 4000mg and put
me on new oral medication three times a day to protect my gall bladder.

I have spent the last month or so even more exhausted and nauseated than normal ;-(

I tried to wash my own hair on Sept 30th and by the next evening my picc site was red and oozing green stuff.. My sweet hubby cleaned it up and changed my tagaderm a couple times a day and within just a few days we had it cleared up.. thank you Jesus!  I really didn't want to go through pulling this one to get another.

One thing I really need to add today is I am feel extremely lonely

Friday, August 26, 2011

My First Lyme Post

I am new at this so.. I hope to start keeping a  little better log of  my journey with Chronic Intracellular Lyme Disease.. it is by far the toughest battle of my life!

I will start by telling my story..

I am of strong Christian Faith, and live in the USA (Central Iowa)  Will be 50 next year, Married to my best friend since 1982 and we have been together since 1978.  We raised two beautiful adult men and have two wonderful grand kids! AdaLisa will be 8 next month and Forest was 5 in March.

My husband (Pat) and I have been outdoor people all of our lives.  We Love to Travel, Camp, Boat, Fish, Hunt and Ride Bikes.

For those who unfamiliar with Lyme Disease, it and several Co-Infections are caused by the bite of tiny little tick.  If treated right away with a few weeks of antibiotics it is curable, but if it goes untreated and becomes chronic there isn't any cure yet..  there have been some that have gone into remission and a few that have claimed to be cured.  However I wonder if they really had Chronic Lyme Disease and/or if they are really cured or just in a remission.  I would think if there really was a cure there wouldn't be so many people suffering and dying from this horrifying disease??

Pat and I have both been bitten over and over by many ticks throughout our life's.  I think that all of mine have been in my scalp, where most of Pats have been in his stomach or legs.

We have both been ill for many years, so ill that we have not been able to maintain employment for many years.  I became disabled in Jan of 2003 and Pat became disabled in Feb of 2004.

We also have a Co-Infection Babesia, that is much like Malaria and requires the same treatment and medication.

I have had numerous issues caused from the Chronic Lyme and Babesia Infections, and some of the Co-Infections are not easily found so probably a good chance that I do have others.

Some of the Medical Problems and symptoms I have that are a direct cause of these infections include

*Horrible Headache's and Migraines
 Terrible Muscle and Soft Tissue Pain
 Joint Pain in
  Neck, Shoulders, Elbows, Wrist, Hands, Fingers, Upper  Mid and Back,Hips, Knee's,  Ankles, Feet and Toes
  Lots of small muscle twitches, and large muscle jerks.
  Trembling inside and out
  Pain and high pitch in ears
  Extreme Fatigue
  No Energy
  Unable to Sleep or Rest *due to pain I believe
  Sleep Apnea
  Unable to complete thoughts
  Poor Concentration
  Poor Memory
  Unable to recall simple words and names
  Extremely Low Ferritin
  High Liver Enzymes
  Numbness in Lower legs
  Tingling in Hands and Feet
  Raynaulds Syndrome
  Very Low Vit D Levels
  Nausea and Stomach Pain
  Sore Throat and Glands
  Heart Pain and Palpitations
  Low Body Temperature
  Terrible Hot Spells and Sweating
  Strange feeling like freezing with hot ants crawling on me
  Chronic Pain

I'm sure that I have probably forgotten a few things..

I have been diagnosed through the years with Arthritis, fibromyalgia, Degenerative Disc Disease, Migraines, Anemia and more..

I had never really thought about Lyme Disease Much until a man from Church approached me to say that they thought maybe his daughter had Lyme Disease instead of an original diagnosed of Juvenal arthritis and the more he learned about Chronic Lyme disease the more he thought that my husband and I needed to look into it.
So in Mid 2009 I started doing some research and the more I read the more I thought he was probably right!

So I finally asked my Family Doctor about getting tested and his reply was.. "We don't have Lyme Disease in Iowa"  Stuck me as very odd..  We have tons of White Tail Deer and Deer ticks and they are the number one cause of this disease..  but on the other hand I have always loved and trusted this doctor very much.. 

I guess I should say as far as doctors go, I have never really went to them unless absolutely necessary.  I went for both pregnancy's and a huge tumor I had back in like 2002 that required surgery.  I did however know this doctor fairly well as my husband and children had seen him for a number of years.

So I did some more research and found a couple great Lyme forums on the Internet and they led me to a Lab that sent out Lyme test kits and my doctor did collect the blood for us and send it in. 

When the results came back it was very hard to understand and the Lyme forum people told me I needed to search for a LLMD (Lyme Literate MD.)  This was a tough s there wasn't many of them.  Thankfully I was directed to the Iowa Lyme Coalition.  Imagine that, there was so many people with Lyme in Iowa that their was large group of people in this organization.
They told me about a Doctor that had just finished his Lyme Literate training and we were able to get an appointment with him.
He spent a lot of time with us clinically, read our lab reports and ran another 6 or 7 tubes of blood tests.. his findings  Chronic Intracellular Lyme Disease and Babesia Infection.
We started on antibiotics and melarone for the Babesia infection, that was in Jan of 2010.  We went back to him every 4 to 8 weeks and ended up on the full treatment of three different types of antibiotics that attack the Lyme Spirakeets, Lyme Cysts and .. cant think.. ugg.
 The doctor wanted us on IV medications from the start as he thinks that we probably had this for 10 to 15 years or more, however my insurance didn't cover at home IV meds and I was far too sick to go to an infusion center ever day.

After 13 months of  treatment my stomach just couldn't take the antibiotics another day!  We were both having a terrible time with nausea and went off of everything for four months.

After our little sabbatical from treatment we were both getting worse and worse and knew that we didn't have any other choice than to get back on treatment.  We sure didn't want this to progress any further!! 

I also found out that it was my Part D Medicare that wouldn't pay for the home IV Treatment that I needed and I am able to choose what company I want to go with, so after some checking I found one that would work for the medications I use and the IV medications that I was needing. 
I changed company's and had the PICC Line (Peripherally Inserted Central Catheter)  my arm that delivers the IV meds to the artery near my heart And was able to begin the Home IV Treatments at the End of June 2011. 
Here's a photo of what a picc line is.

Picc Line

Also found out that when I stopped treatment my babesia numbers where down from 29. something to 19 and now after taking a break from medication they are back up to 29.9

I am going to try to keep up with this blog, hopefully It will help me keep a journal of this journey, help others with Lyme disease awareness and help keep my family and friends informed about our health.  Thanks for reading and your support!