Still struggling

I am still struggling with the thoughts and emotions of my friend's passing. Today, we had the tough task of telling the children where we teach about our colleague. All of the parents requested that we do it together as a group for the older children. So today, we gathered them and told them about the death of their beloved friend.

I said on Tuesday that I will never forget the sounds of all of us on Monday night. I will *never* forget the sobs from those children today. My heart ached all over again as we were consoling them. We need to buy stock in tissues. We definitely went through them today. The children had very good questions ... the same questions we had on Monday.

How am I doing? I'm still struggling. I'm doing the best I can with the skills that I have. I hope to never hear the sounds of over 25 sobbing children ever again. The wake was today and the funeral is tomorrow. Our compassionate District Manager sent out a request for other teachers to come in and take care of any children that couldn't be picked up early. So other centers are sending volunteers to help us as we go pay our respects to our friend and her children.

There are not enough thank yous in the world to share with these ladies that are coming to care for our children while we are in mourning. Please continue to pray for the children of my friend. I know they are struggling with all that has happened over the last week. I just wanted to give an update for those that might be concerned.

Very difficult day

I suspect the next few days will be extremely difficult for my friends and me. As much pain our hearts all feel, our hearts ache most for the children. Last night, my boss had the most difficult task of informing her 19 teachers that our beloved coworker had passed away. It was sudden, shocking and I will never forget the audible gasp and tears from the 21 people in that room last night.

Friday and Saturday, our friend was fine and on Sunday she was rushed to the hospital with a horrible headache. All that we knew on Monday was that our friend had called out to work. I'm sure some thought, "what an inconvenience" and others probably thought nothing of it at all. My boss received a phone call early Monday morning informing her that our dear friend was in the hospital and the outcome wasn't great. Our boss made the difficult decision to hold this in and called an emergency meeting for that night to let us know what was happening.

We didn't know why we were needed, but what I knew was that in the four years I have been at that day care center ... I have NEVER once had my boss call an emergency meeting for the same day. Same week .. sure .., but never the same day. She knew that we would all need each other with the news that she was sharing about our dear friend being in the hospital.

We would all need each other last night more than ever as a mere 5 hours after letting us all know that our presence would be required our dear friend passed away. There are so many questions to be answered ... What happened? Was she in Pain? Where are her children? Why did this happen? and How do we tell the children that we care for every day that a woman that was "just fine" on Friday was no longer here?

There is no manual for all of this. There is no time line for grief. How can we be "normal" for the children and parents when WE are aching so much ourselves? My friend's children ... her beautiful children. How I ache to be able to take this pain away from them and give them their mother back. An 18 year old girl who gave birth to my friend's first grandbaby, her 13 year old daughter and a pre-teen boy have to live the remainder of their lives without the woman who gave them theirs.

Death is a difficult subject. We have to take care of ourselves, our friends and most importantly the children that loved her so much. This brings me back to the subject I have thought about so many times before. When you expect death, you grieve during the illness and there is a bit of a relief when your friend/family is promoted to Heaven. You grieve, but it's a bit different. A sudden death, You grieve so much harder. You cry so much harder.

Please pray for all of us affected by our friend's death, but most importantly pray that her children will have understanding that God loves them and God doesn't make mistakes and she is living forever in Heaven.

Not Me Monday (cancelled today)

There will be no Not Me Monday today.

A friend/colleague passed away today. Please pray for her children, family and all of us at work. She's a lady that truly will be missed every day. Extremely difficult time for all of us.

Lyme Disease Book Review

On April 6, I was asked by Bryan Rosner to review one of his books. Mr. Rosner's name is one of those names that stands out to me just like Connie Strasheim when it comes to Lyme Disease Authors. I am honored that Mr. Rosner wants me to read his book. I hestitated ,only for a moment, accepting the challenge to read because I know how long it takes for me to read a book of this magnitude, but it will give me excellent knowledge and perhaps I will be armed with even more power to beat Lyme Disease. As with any given challenge, I will take this book on with great umph. If you are interested in purchasing his book (even prior to my review), all you have to do is click HERE.

On April 9, I received a package in the mail. United Postal Service can be slow at times, but in this case rapid delivery allowed me to have this nifty book in my hands three days after being asked to read this potentially marvelous book. There is potential for this book to be marvelous after all the title says it all. The Top 10 Lyme Disease Treatments: Deafeat Lyme Disease with the Best of Conventional and Alternative Medicine.

Going into this book, I already guess that even "conventional" treatment for Lyme Disease is actually an alternative to most doctors so I suspect this book will be filled with lots of information. The forward to the book was written by Dr. James Schaller, a well known Lyme Literate Medical Doctor. That, in and of itself, subjects me to think that this would be a marvelous book on Lyme Treatment. However, I wonder immediately if Bryan Rosner is considering a rewrite on the informational book since it was written in 2007. A lot of things have changed since 2007. I know because that's when I first entered treatment.

This book talks about the best of the best treatment suggestions. Upon looking at the Table of Contents, I am already riveted to read since it talks about several things I have been hearing talks of through forums and through Lyme patients I know in person. Bryan writes about Antibiotic, Salt & Vitamin C, the Rife Machine, The Marshal Protocol and even discusses detoxification. He writes about the 5 supportive supplements for Lyme patients. I have heard about all of these supportive supplements by my own LLMD so even though Bryan is not a physician himself, he has the knowledge that benefits the Lyme community.

It is going to take me a while to read the entire book, but keep an eye out for my review in it's entirety soon. (well as soon as I'm finished reading the book)

On first few pages though, I say this book is a must have for your Lyme Library!

Lyme Posts

Here are the blogs I have written on Lyme Disease so far.

Tick Borne Illness Part 1
Tick Borne Illness Part 2
Tick Borne Illness Part 3
My Under Our Skin Experience
Plum Island Conspiracy Theory
Radio Interview of Andy Abrahams
Hall & Oates ~ Lyme Celebrities
Amy Tan ~ Lyme Celebrities
Rebecca Wells ~ Lyme Celebrities
Difference between Regular MD and Integrative Medical Doctor
Guest Blogger on Lyme Disease ~ by Renee
Going to get a PICC line for Antibiotics? Youtube Video
My "So Angry" post about the politics of Lyme
Greta Van Sustere's blog on Lyme
Under Our Skin Trailer
Explaining Lyme Tests
May is Lyme Disease Awareness Month
Share your Lime
Lyme Videos from Michelle (2 parts)
An Article on Gretchen
Tick Borne Illness

May Lyme Disease Awareness Month

May is Lyme Disease Awareness Month.
If you don't have a Lime Green pin or ribbon, get one. We need to get the word out that LYME DISEASE IS A PROBLEM!!!!


Wanna make a bigger impact, buy a Lyme Disease shirt! People will surely stop and ask about your shirt that says Lyme is a four letter word!
This shirt can be purchased by clicking the picture of the shirt. The person who created this shirt is (obviously) affected by Lyme. Go to her blog to see other designs for shirts, buttons and other assorted items.


Print off flyers and information about Lyme Disease and pass them around doctor's offices, legislative buildings and even people you see that ask you about your shirts and ribbons.


People KNOW that October is Breast Cancer Awareness month. Make an IMPACT on Lyme Disease. Make people Aware that Lyme Disease exists and it is a Chronic Illness. Make people aware that it imitates other illnesses and the controversy surrounding treatment and test results.

I will post this blog many times prior to May 1st so that everyone has a chance to change the world's perception of Lyme Disease.

Tie a Lime Green Ribbon on your Car or Tree during the month of May. Post these pictures on your blog to show your support for Lyme Disease patients!

Wear Orange

Are you up early and viewing my blog. Well ... Today, Stellan's "fans" are wearing Orange.

Stellan is having a heart surgery this morning.
Stellan is a baby.
Stellan and the surgeon's need prayers (8:30am EST).

Wear Orange to Support Stellan.

Here's his MckMama's blog.

I wore Orange in Stellan's Honor. Ever heard of a Scooby Snack? Well I had a "Stellan Snack." :D

Not Me Monday

** Pardon any spelling or grammatical errors or things that just don't make sense. I've been having some neurological Lyme symptoms today.

*** MckMama Announcement **** Stellan is going to be having surgery tomorrow. Please wear Orange in honor of Stellan. Click on the "Not Me Monday" button to go to MckMama's blog to check on Stellan.

Her baby needs our prayers. Click on the Not Me box and it will take you to her blog in order to read what is going on with her sweet baby. MckMama has had a Not Me Respite in order to take care of her precious MckMuffin, but take this time to go over there to read all about Stellan.

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

It did not take me 5 minutes to figure out why this post wouldn't post. And I did not have the date scheduled to post on TUESDAY.


I did not IM my friend Missy to have her call my Husband because the phone was off the hook and I couldn't find it. He was not needed to be contacted because of a possible evacuation.

When packing up things for said possible evacuation, I did not put my hair dryer, flat iron and hair supplies in a suit case just in case I'd have to stay over night somewhere. Since I don't have the "gene" for doing hair ... these items wouldn't come in handy later.

I did not break a 9 month old feud with the neighbor to find out what was UP with the fire trucks. I'm a grown woman. I should be able to see SMOKE & FIRE! I did not joke around with them saying somebody probably said "Hey Bubba watch this" prior to the fire starting.

I did not start downloading all my pictures from the computer to a USB key while packing up emergency bags in case of evacuation either. That would be just ludicrous. Just get your stuff together and GO. Why would I worry about pictures? My husband did NOT come home later and say, "next time just pack up the whole computer." Who does this? Not US?

When I woke up in the middle of the night, I did not come straight to the computer to chat in a Lyme Chat room at 3am for an hour.





Here for your viewing pleasure are my old Not Me's!

Week 1: Wii Fit Cheater
Week 2: OCD Shoe Lace
Week 3: "Your in" for a real treat on this one.
Week 4: I'm 12 again!
Week 5: PICC me! PICC me!
Week 6: Oh "Holey" Days!
Week 7: Overeaters Anonymous
Week 8: Hair Today: Gone Tomorrow
Week 9: Liar Liar Pants on Fire
Week 10: Khakilin' at the store
Week 11: To Capri or Not To Capri
Week 12: Losing my V Card
Week 13: It's beginning to TICK me off
Week 14: PC Out!
Week 15: Earth, Wind & Fire (this week's post)

35 acre Brush Fire

So we had a 35 acre brush fire in the woods at our subdivision. It was scary and some homes were evacuated. People that lived here could not come in and some folks were told to leave.

From my kitchen window



News shot near the fire itself when it was closer to being contained.


News shot from the fire. The kids in the neighborhood usually play right there. It will be burning for weeks they say.

Changes again

I felt a little drabbish with the brown color. I loved it a lot, but felt that this time of year needed a brighter background. So with the new change, a new poll. Please leave comments about your poll answers so that I know what my readers think.

Ups & Downs of Lyme

I wish I had something eloquent to say to describe the cyclical nature of Borrelia. Amazing how one tiny bacteria can affect your body in so many different ways. This past month I have found myself documenting any symptoms that have arisen with great intensity. The variety of symptoms I have discovered are amazing. I have a word document with list of symptoms. If I had a symptom in the day, I would simply put a Y (as in Yes). If I didn't have it, I wouldn't put anything at all. Occasionally, I put R for Reason. IE: If I didn't get into bed until 1am and got up the next day at 5am, there would be a REASON for fatigue & exhaustion.

So here we go: April 1st to 18th:

I have had FOUR days of itching (probably all Candida related)
I have had TWO days of confusion and difficulty thinking*
I have had ONE day of difficulty reading
I have had FOUR days of eye difficulty (floaters, blurry vision, double vision)
I have had SIX days of fatigue and stamina difficulty **
I have had THREE days of forgetfulness and uh .. what was I saying? (snort)
I have had THREE full days of headache pains.
I have had THREE days of joint pain or swelling
I have had ONE day of lightheadedness
I have had TWO days of moodiness/depression
I have had THREE days of bumps on my PICC line area (total of 5 bumps)
I have had THREE days of sleep disorder (too little or too much)
I have had TWO days of sore throat
I have had ONE day of Stiff Neck, Joint
I have had ONE day of Swollen Glands (Neck specifically)
I have had FOUR days of tingling, numbness, burning sensations
I have had TWO days of twitching.

While those look daunting and scary ... look at these:

I have had FOUR WHOLE DAYS of No symptoms at all.
I have had THREE WHOLE DAYS of only ONE symptom.
I have had FOUR WHOLE DAYS of only TWO symptoms.

That is a total of ELEVEN out of EIGHTEEN days where there were two or fewer symptoms.

That means only SEVEN of EIGHTEEN days had 3 or more symptoms.
Today I have 9 symptoms. This is disheartening.

Itching, Sore Throat, Joint Pain & Swelling, Fatigue, Headache, Depression (who wouldn't be depressed after realizing there are all thse things going on in one day?), swollen glands, tingling body and I slept too much. There are things that are going on that I didn't even document. This stinks. I will survive though. Always do. Just a little depressing today.


*(and those were really bad days .. I didn't count small events of confusion)
** two of those days had reasons

Update on Emerson White

Please continue to not only pray for Emerson for her post transplant recovery, but remember the family that made the decision to donate their BABY's organs to a stranger. I can not even begin to imagine the heart ache they are feeling right now.

Visit the blog and lend your support.
Copying straight from her mom's blog.




Emerson’s out of surgery & in the PICU! Dr. Botha said everything went well, “as well as could have been expected, if not better”. He’s pleased. He said the donor was half her size/weight (approx 15 lbs – average weight for a 4-6 month old). Her donor was a baby.

Dr. Botha placed stints in her ureters (running from her new kidneys into her bladder). They will need to be removed in approx. 6 weeks. Additionally, he said she was oozing a lot & that is concerning. He felt it best this morning to warm her up, replace her blood products, correct her coagulation factors, and then reassess. He placed a drain into her abdominal cavity to keep an eye on internal bleeding. He also left her incision open. He said she’ll almost certainly go back to surgery in the coming days – exactly when, among other things, depends on the amount of output from the drain.

She didn’t code or go into vtach during surgery (as she did during the first transplant). Her blood pressure dropped very low, though, but they were able to stabilize it. She required lots of blood, plasma, & platelets, as expected. Her very small amount of remaining bowel looked okay, but her liver looked sick.

I’ve been reminded several times that surgery is the “easy” part. It is the coming days and weeks that will be very difficult and will ultimately tell her story. Dr. Botha said, “keep praying”. I’m relieved, though, to be on this side of transplant. One day, one hour at a time from here…

She’s resting comfortably & I’m hoping to do the same at some point today. Words could never express my appreciation for the donor family today. In their very darkest hour they chose to give another child life. My heart weighs heavy for them today; my heart weighs hopeful for Emerson today. May her life in some small way bring them comfort & peace.

Little girl Emerson White

I am copying & pasting from her mother's blog. I've been reading the blog for a while. So read and be inspired.

*********

WE GOT “THE CALL”!!

The surgeon accepted an organ offer for Emerson this morning!! She’s admitted & going through the pre-op process. The team is out procuring the organs as I write - liver, bowel, pancreas, and kidneys! Surgery is estimated to begin between 10 & 12 tonight. All expect her to come out sometime tomorrow late morning.

I have a good feeling about this! It’s Daddy’s birthday today – a great day for a transplant!!!

Check back often for updates through the night. (I won’t send e-mail notification with each one.)

Many prayers & heartfelt appreciation for the donor family on this very difficult day…

My Anniversary (edited)

April 15, 2000 ~ We said I do.
We said "In Sickness & In Health.
I was sick the day we got married.
So terribly sick, but who knew that was just the beginning of it.
Our joke is when is the "in health" part going to start.
But in all actuality, I've done my job to have the "in sickness" part of our vows.
I am so glad that he's done is job to have the "In health" part of our vows! :D
However we know that TBD probably has the best of his immune system too
May 14, 2009 we will find out whether we will be fighting
the Lyme fight together as a couple or whether it truly is just me.


That we've come from this

Note the really tan legs & fanny pack
Don't ask how they got so tan because I have no idea.

to this:

Look at that long hair. I grew it out for the wedding.
Look at the really high sitting waist pants.

to this:
The first day of the rest of our lives

To this:

9 years later
The glasses shrunk.
The tan has faded.
His belly has gained girth.
But in sickness & in health
we are together
silly as ever.

From the age of a tiny girl, I knew that
Canon in D by Pachebel that just *had* to be played.
Loved it then! Love it now!

And then ... the song by Blessid Union of Souls: Rest of my Life. (ignore the video part cause well it's Dawson's Creek ... just listen to the song)

Not Me Monday

**** Please go visit MckMama's blog today ***** Her baby needs our prayers. Click on the Not Me box and it will take you to her blog in order to read what is going on with her sweet baby.
MckMama has had a Not Me Respite in order to take care of her precious MckMuffin, but take this time to go over there to read all about Stellan.

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

When walking down the aisle at a store, I did not look at an item for sale and say out loud, "Hey there's a 3 Bamboo Serving Set P.C." My husband did not have to correct me by saying, "that's a 3 PIECE Bamboo Serving Set."

I did not jump up and down and scream in the doctor's office out of pure JOY when I saw my Lyme Test had come back CDC positive. I did not go around from person to person in the office and shove the test in their face and say "IT'S POSITIVE" like a crazy lunatick lunatic.

I did not consider the option of scanning in my Positive test onto one of those Ironi On Sheets and putting it on a T-shirt for wearing out in public.

I did not use the words "Bomb Diggity" this week on the facebook wall of a friend after she had her picture taken with the one the only Eric Montross.

I did not freak out on a friend (or two) when they mentioned that they had found ticks on themselves (crawling & imbedded).

Here for your viewing pleasure are my old Not Me's!

Week 1: Wii Fit Cheater
Week 2: OCD Shoe Lace
Week 3: "Your in" for a real treat on this one.
Week 4: I'm 12 again!
Week 5: PICC me! PICC me!
Week 6: Oh "Holey" Days!
Week 7: Overeaters Anonymous
Week 8: Hair Today: Gone Tomorrow
Week 9: Liar Liar Pants on Fire
Week 10: Khakilin' at the store
Week 11: To Capri or Not To Capri
Week 12: Losing my V Card
Week 13: It's beginning to TICK me off
Week 14: PC Out! (this weeks post)

Then & Now

So I wanted to do a stare and compare from May 07 to February 09

The left set is from May 07 and the right set is from February 09

I will BOLD the ones that changed for Stronger
I will not do anything to the ones that stayed the Same
I will Italicize the ones that got weaker

++ 18kDa: ++
- 22kDa: -
-** 23-25 kDa: +
- 28kDa: -
++ 30 kDa: +
-** 31kDa: -
-** 34kDa:-
IND** 39 kDa: IND
IND** 41 kDa: +
- 45kDa:-
- 58kDa:-
+ 66kDa:-
- 73kDa:-
- ** 83-93 kDa: IND

Three got stronger. All three that got stronger were a ** number
Two got weaker, but one that got weaker was still a positive. The one that remained positive, but got weaker ... was a ** number. The other one that got weaker was not a ** number.

Now here is the IgG. Again things on left are from May 07 and the ones on the right are from February 09


- 18kDa: -
- 22kDa: -
-** 23-25 kDa: -
- 28kDa: -
+ 30 kDa: -
-** 31kDa: IND
-** 34kDa:-
-** 39 kDa: IND
+** 41 kDa: ++
- 45kDa:-
- 58kDa:-
- 66kDa:-
- 73kDa:-
-** 83-93 kDa: -

Again, three got stronger. And all three were ** numbers. Only one got weaker and it was not a ** number.

So in all .. a total of 6 bands got stronger. All 6 were ** numbers. Only three got weaker, but one of those three was still a positive. And the other two were not ** numbers. (IE meaning they aren't really all that important).

So grow antibodies grow!

Jesus Lives

1. When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

* Refrain:
It is well, with my soul,
It is well, it is well, with my soul.

2. Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.


* Refrain:
It is well, with my soul,
It is well, it is well, with my soul.

3. My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

4. For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.

5. But, Lord, ’tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul!

6. And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

Sunday Morning Ministry

Go visit Mr. Rigg's Sunday Morning Minstry.

For those of you who may be at home with sick children or some other reason you are unable to meet with other local Believers, Brent Riggs has prepared a message for your encouragement.

google reader

If you are reading this from google reader, please click over to the blog itself.

I am conducting a survey about my new layout .. so please so kind as to fill it out. I had the ones with the 3 leaf clovers and while I loved it, it was hard on my eyes and a few other Lymie eyes. So I chose to change it last night. I'm not sure if I JUST LOVE IT or if it's "Eh alright." I definately don't hate it and it's not hard on the eyes, but I wonder what others think.

Thanks.

Also added a counter yesterday. Discovered that my blog had been visited 25 times over my sleep. I couldn't figure out how to add one until yesterday. Then it asked me my starting number. I Know my blogs been visited at least 1,000 times (and according to one of hte maps it's more than that) so I started the counter at 1,000.

I've written quite a few blogs in the last few days. so scroll down if you've not read them.

Living the Lyme Life (bump)

**Updated** June 5, 2010***

Welcome to all of you that are new to my journey. Here are my most relevant posts to my health. Start at the top and work your way down for the Chronological Lyme Journey.

My Diagnosis
My Therapy
A day in the life of a treatment
My PICC Line Story Part 1
My PICC Line Story Part 2
Live Blood Cell first visit
Grey's PICC Line Story
Slow Progress
My LLMD appt
November 15, 2008 Update
Chelation Challenge
Mercury Toxicity (My Mercury test came back negative)
Living the Lyme Life Post
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC
Two year anniversary plus supplements
March 15, 2009 Update
Post PICC Pics
Conflicted Lymie
CDC Positive Test Results
Ups and down of Lyme
Live Blood Cell of Rob & Me
Previous Photos of me
Small Victories
Curious Lymies Goes to the Doc
OCD about ticks
The Serenity Prayer
August 8, 2009 Update
Supplement Strategy
August 30, 2009 Update (Rob & Jennifer)
Starting LDN
Explaining LDN
October 10, 2009 Update
January 9, 2010 Update
Third Anniversary of Diagnosis
March 18, 2010 Gotta Go
March 25, 2010 Rough Week
May 2, 2010 Swollen Eyes
May 7, 2010 Weird Bruise on Hand
May 22, 2010 Waiting
May 22, 2010 It dropped
New Dose LDN
June 5, 2010 Update


There ya go. The most important health blogs all in one place! Enjoy reading if you've not read them before.

Laughter Lives Tuesday Update

I posted that I saw a message about photography in undies. I wanted to share what that sign really said,

Photography with Live Bunnies with Lundies!

So at least I really did see the word "undies" .. just didn't see the "L."

I am CDC POSITIVE for Lyme Disease

The important announcement I have to make is self explanatory. I am CDC positive for Lyme Disease for the IGM results. The "sample" test I showed you .. was MY test.

IGM is indicative of a current infection
IGG is indicative of a current infection or a past exposure or a past infection.

MY TEST RESULTS:


IGENEX IGM RESULT: POSITIVE
CDC/NYS RESULT: POSITIVE

18kDa: ++
22kDa: -
**23-25 kDa: +
28kDa: -
30 kDa: +
** 31kDa: -
** 34kDa:-
** 39 kDa: IND
** 41 kDa: +
45kDa:-
58kDa:-
66kDa:-
73kDa:-
** 83-93 kDa: IND

For the Igenex test results to be positive, two or more ** numbers have to be positive.
For the CDC test results to be positive, FIVE of the bolded numbers have to be positive.

IGENEX IGG RESULTS: NEGATIVE
CDC/NYS RESULTS: NEGATIVE



18kDa: -
22kDa: -
**23-25 kDa: -
28kDa: -
30 kDa: -
** 31kDa: IND
** 34kDa:-
** 39 kDa: IND
** 41 kDa: ++
45kDa:-
58kDa:-
66kDa:-
73kDa:-
** 83-93 kDa: -



To recap: My IGM is POSITIVE by CDC Standards. This is considerable validation. From all the research I have done .. this means I am creating ANTIBODIES to fight a current infection. This is quite scary indeed, but I will find out more on my May 2nd LLMD appointment.

My IGG is negative by both CDC and IgeneX standards, but if one of my IND had been a + instead ... it would have a positive by IgeneX standards.

IND means that there was a light band there, but not dark enough to be called a +

There is your Lyme Testing 101 .. Any Questions? :D

Explaining Lyme Tests

This is very difficult to understand. I apologize for that. I still don't understand it all. Try to get through it and read down to the bottom of the post. It is VERY important. :D

I have mentioned that testing for Lyme Disease is very controversial because of the inaccuracies of the test results.

The first and most common testing that Primary Care Physicians order to test for Lyme Disease is called the ELISA which stands for Enzyme-Linked Immunosorbant Serum Assay. *blah blah blah* They draw a blood sample and test the blood for antibodies that our bodies produce in response to being introduced to the Borrelia burgdorferi (Bb) (aka the Lyme Bacteria). In one study that I found, they tested 516 labs. In those 516 labs, 55 percent of the results were inaccurate. How would you feel if pregnancy tests were only 45 percent accurate? You get yourself psyched up for a blood pregnancy test.

How do they run the ELISA test? Well, they take different parts of the Lyme bacteria and break it down into segments and add the patient's blood. Any antibodies that are in the blood will bind to the different segments of the Lyme bacteria. The segments will change color and it will be diluted until there is no color. Then they will give you a dilution ratio. One Part Serum to (how many parts of water they had to use). 1:256 (would be 1 part serum to 256 parts water). Your results will show = Positive, Negative or Indeterminate (had to be diluted too much to be called a negative, but not enough to be called a positive).

For more information on the ELISA test and other tests:

There are many other types of tests for Lyme Disease, but generally LLMD's choose to use a Western Blot test (specifically from IgeneX a lab in California). However other doctors use Western Blots as well. The controversy in this test is that the IgeneX test uses more "bands" than a regular lab would use. I will try to explain a bit about the Western Blot.

When you receive a Western Blot from IgeneX, you receive two test results (actually four, but I will explain that too). IgG and IgM are the two things you will see when you look at your test from IgeneX. You will also note a bunch of different "numbers" with kDa next to them. Some of the numbers will show a double star (**). kDa stands for Kilo Daltons. Here is an example of what the labs see when they are determining your test results.



As you can see, some area (called bands) are dark and some are very light and others aren't there. Some of the bands are Lyme specific and others aren't. Out of a possible 25 bands, only 10 are reportable. Out of those 10 bands, FIVE must be positive on the IgG to be considered positive in the CDC (Centers for Disease Control). For the IgM to be considered positive, TWO out of THREE specific bands must be positive. It wouldn't matter if 8 of the 10 bands were positive, if two of those bands weren't specifically 23, 39, 41. then the CDC would say you had a negative Western Blog IgM.

For the IgeneX IGM results, you would have to have TWO of the double star numbers with a plus in order to be positive. For the CDC results to be positive, you'd have to have TWO of the BOLDED NUMBERS to be positive. (your results would be not bolded, i'm just bolding them here for you to see)

The test results you see from IgeneX may look like this:

IGENEX IGM RESULT: POSITIVE
CDC/NYS RESULT: POSITIVE

18kDa: ++
22kDa: -
**23-25 kDa: +
28kDa: -
30 kDa: +
** 31kDa: -
** 34kDa:-
** 39 kDa: IND
** 41 kDa: +
45kDa:-
58kDa:-
66kDa:-
73kDa:-
** 83-93 kDa: IND

For the Igenex test results to be positive, two or more ** numbers have to be positive.
For the CDC test results to be positive, FIVE of the bolded numbers have to be positive.

IGENEX IGG RESULTS: NEGATIVE
CDC/NYS RESULTS: NEGATIVE



18kDa: -
22kDa: -
**23-25 kDa: -
28kDa: -
30 kDa: -
** 31kDa: IND
** 34kDa:-
** 39 kDa: IND
** 41 kDa: ++
45kDa:-
58kDa:-
66kDa:-
73kDa:-
** 83-93 kDa: -

I have an important announcement to make tomorrow regarding the "sample" test results you see here.

Under Our Skin

Under Our Skin is coming out in theaters soon. I believe in June 09. GO SEE IT!

Pens & Paper Don't Feel

*** first this is extremely long and I apologize for that, but God has placed something on my heart that I must share ****

I have to say that I have spent most of my life feeling as if I didn't belong. I grew up in a very small town where I had extremely close friends. Then my family uprooted us and moved. We did not move far, but it was far enough that I lost all of my friends due to our ages (between 6th and 7th grade) and distance. I lived a very depressed life from 7th grade until 10th grade when I finally felt like I belonged to a group of people that liked me even if though I was different. However, I still spent most of the rest of my high school years extremely depressed. My best friend now saved my life then. He was not my best friend at the time, but I would not be here if God did not place him in my path then.

I have spent my life writing: writing journals, writing poetry, writing doodles, just writing. The poetry I read that I wrote in High School (and even college) are some of the most depressing pieces of works I have ever seen. I read them and can go back to the same feelings I felt back then. I hated the computer. The computer guru at college used to say "Oh no not her" when I'd come into the lab because within 15 minutes of me sitting at it .. the computer would die. I could never figure out how to turn a computer on much less write my college papers on them. I didn't belong at college. I had almost seizures daily and people made fun of me behind my back, but when I wrote ... I felt free.

I would sit in the chapel at church and write. Some letters, some poetry, anything to get the feelings out. I always felt better and not quite so alone after writing. It's like the pen & paper were my friends. It didn't matter what I wrote they would never get mad, upset or offended. My writings never made the pen & paper jealous or happy or anything. The Pen & Paper didn't have feelings. No one ever read them and I suppose no one ever will, but when I read about a boy and mangled flesh (circa 1997) it makes me cringe to see what was going through my noggin.

So once I became computer literate and unable to kill a computer in 15 minutes, it became crystal clear that I should write everything on the computer instead of in pen & paper. just write. That was my motto. I discovered emails, Instant Messenger, forums, myspace, facebook & a world of blogging. It opened my eyes to a whole new world of writing. A world in which others could view my thoughts. On one hand, I felt glad to share my inner most thoughts to people that cared ... but on the other hand it made me very vulnerable. Pen & Paper could never get hurt. People on the other hand. They could be hurt by my inner most thoughts.

I knew I would be able to write my inner most thoughts and feelings on Lyme forums and people would understand. About the same time as I found those Lyme forums, I found out about blogging. I knew I would never do this because I didn't really want the world to read my thoughts.

However I found in September of 2008 that I had a LOT to say. I could educate people who found my little piece of the world about Lyme Disease. The first comment I received from someone asking more about Lyme Disease made my heart feel good. My motto for my blog: Living life as full as I can with the skills that I have and the love I receive.


For now this is what is on my heart & soul. Pen & Paper don't get hurt, but people do.
Sometimes people say things that aren't intended to be hurtful and sometimes I write things that hurt others and it was not my intentions. I must first say that no one that has ever commented on this blog has EVER been hurtful. It was something else that happened today that produced this lengthy blog. Because when I hurt, I write. I write in journals, write poetry, write doodles, just write on my blog.

The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:28-31

I just ordered ....

Laughter Lives Tuesday

This post is part of "Laughter Lives! Tuesday" on the Riggs Family Blog. Check our their blog to read everyone else's "Laughter Lives!" posts.

I had to add two things that happened today that made me have a laughing fit. First is that I stayed up late late last night (midnight for me is like 4am for others). So I was having some visual hallucinations this morning. The Clock said 5:00. I looked at it fast and thought it was SOON. I closed my eyes and looked again .. still SOON. Then finally I realized it was 5am and my alarm was blaring at me. I chortled for a bit.

Then I was on my way to work and saw this billboard. Now in hindsite it MUST have said, "Photographs with bunnies," but I read ... "Photographs in your UNDIES."

This Laughter Lives Tuesday needs a disclaimer: I don't expect many will find this funny, but I rolled in fits of laughter.

So some things from the outside would cause extreme laughter while the same thing for others would cause serious looks of concern. Whenever I see a tick, I don't know whether to laugh or cry as I'm scrambling looking for appropriate tick removal items. My instinct is to be really serious. And that I do. Case in point on Sunday, I'm calling my husband "come home immediately." He leisurely walks in to me holding our dog as still as I can and say "we need pliers to remove this tick."

PLIERS ... did I really say PLIERS? He promptly pulled out his SWISS ARMY KNIFE and pulled out this tick while I'm totally freezing because HE'S NOT DOING IT RIGHT!

Well when he left, I started laughing. Laughing until the tears started falling.

Then ... I saw an advertisement for this:

The laughter continued. Let me help you decipher what is IN this kit: Precision Twizzers, Magnifying Lens, Antiseptic Towelettes, Tick Storage Bags Instructions.

Something about the word Towelette makes me laugh and I laughed for a good 20 minutes.
Only $7.60 at Amazon.


Then ... I saw this:




For some reason both products caused me to have a serious case of the laughters.

Carolina Championship Game

Record broken for first-half time points in a Championship Game
Record made for biggest point differential in a Championship Game at the half.

So far so good. Carolina scored 55 points in the first half. The most ever scored in the first half in the Championship Game. Michigan State put up 34 points.

I thought this game would be closer, but I will take this over a night of .. hand wringing, heart pouding, voice yelling, skin sweating game any day.

I'll keep updating this as the night goes on.

Make that THREE records.

Ty Lawson has stolen the ball 8 times so far in the game. Prior to this game, the most stolen in the championship game was 7.

Score is 61 to 41.

Let's GO Tarheels Let's GO!

Score is 67 to 47 10:40 to go

FOURTH RECORD

Highest Attendance for a Championship Game!

Roy's Boys are making my Day.

84 to 68 with 2:07 basketball minutes

Basketball Minutes are the longest minutes ever.

FINAL SCORE
89 TO 72 BABY!

Not Me Monday!

**** Please go visit MckMama's blog today ***** Her baby needs our prayers. Click on the Not Me box and it will take you to her blog in order to read what is going on with her sweet baby.
MckMama has had a Not Me Respite in order to take care of her precious MckMuffin, but take this time to go over there to read all about Stellan.

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

These are in no particular order.

I did not send an email to CBS about Lyme Disease upon learning that Katherine has been diagnosed with Lyme Disease. I didn't share with the producers my email address, my home address, my telephone number and any other pertinent information to contact me. That would be certifiable.

When I realized that my friend was at the Final Four, I did not randomly email her to ask for her to take a picture of Stellan's name there. Since she has no clue who Stellan is, that would be insane of me to do. I most certainly did not do that and she most certainly didn't take it and send it to me in less than 15 minutes. That would mean she was on FACEBOOK while watching the Final Four. Whoever would do that???? NOT HER. ;)

I did not chase my husband down with Insect Repellent (aka TICK repellent) on Saturday when he was going out to cut the grass. I most certainly did not use the smell good Insect Repellent and was not running after him spraying it in midair while he was yelling, "AT LEAST LET ME USE THE MANLY KIND."

Please come back as I may think of other things that I did NOT do.

Here for your viewing pleasure are my old Not Me's!

Week 1: Wii Fit Cheater
Week 2: OCD Shoe Lace
Week 3: "Your in" for a real treat on this one.
Week 4: I'm 12 again!
Week 5: PICC me! PICC me!
Week 6: Oh "Holey" Days!
Week 7: Overeaters Anonymous
Week 8: Hair Today: Gone Tomorrow
Week 9: Liar Liar Pants on Fire
Week 10: Khakilin' at the store
Week 11: To Capri or Not To Capri
Week 12: Losing my V Card
Week 13: It's beginning to TICK me off (today's post)

Lyme Disease Awareness Month

May is Lyme Disease Awareness Month.
If you don't have a Lime Green pin or ribbon, get one. We need to get the word out that LYME DISEASE IS A PROBLEM!!!!


Wanna make a bigger impact, buy a Lyme Disease shirt! People will surely stop and ask about your shirt that says Lyme is a four letter word!
This shirt can be purchased by clicking the picture of the shirt. The person who created this shirt is (obviously) affected by Lyme. Go to her blog to see other designs for shirts, buttons and other assorted items.


Print off flyers and information about Lyme Disease and pass them around doctor's offices, legislative buildings and even people you see that ask you about your shirts and ribbons.


People KNOW that October is Breast Cancer Awareness month. Make an IMPACT on Lyme Disease. Make people Aware that Lyme Disease exists and it is a Chronic Illness. Make people aware that it imitates other illnesses and the controversy surrounding treatment and test results.

I will post this blog many times prior to May 1st so that everyone has a chance to change the world's perception of Lyme Disease.

Nov 6 2007

Since I have been feeling somewhat down, I thought I would remind myself what my life was like before. I've reposted this once already (back in Dec. of 08). It has now been 17 months since I wrote this on myspace. I'm highlighting some interesting lines (different lines than were highlighted in December).

***********************************

Last few weeks
Current mood: Rebellious

My last few weeks have been weeks of highs and lows. I don't understand how one day can be so fantastic and the next you can feel like you've been hit by an 18 wheeler. Lyme disease is so damaging to so many things, but I think mainly my ability to have fun has been drastically altered. I've never been one to stay up late or go to ball games or trips or ballets or anything that remotely resembles fun, but the fact that I have been stripped of the possibility of fun has taken a toll. So I am doing what I must: I am rebelling. Rebelling against my meds. Rebelling against my body. Rebelling against my spirit. My spirit will not break. You can't break what's already broken.

The last few days I have woken up nearly every morning at 3am "worshiping" the toilet. Then I have to go be at work by 6:30 and try to pretend that everything is just hunky dory. I spent all day in bed on Sunday because I rebelled against my meds and went to the Carolina basketball game to watch us win and then stayed out way too late eating dinner. Of course the dinner didn't set well and I wound up back in the bathroom again at 3am. My legs felt like someone twisted the meat right off the bone and my stomach was just about as empty as it has ever been. There is no way to put into words the amount of pain I was in on Sunday. Going on and off of antibiotics that make me feel so unbelievably bad inside. The rebellion was nice, but what did it accomplish? Another few days of Hell and now that I'm back on track ... I'll be back in the bathroom because the antibiotics make me feel so gross.

My first ever UNC basketball game was awesome. Almost everything was perfect. Ignoring the fact that my entire body was killing me and the smell of the lady wearing what appeared to be an entire bottle of perfume was gagging me, I actually had a pretty good time. (this was the same bolded line as december, but it is PERFECT to describe how I felt that day)

Rebelling the evil spirit of pain, I have made plans to go to the ballet near Thanksgiving and a trip to Western Carolina in a week or so. I'm pretty stoked to be doing things that are fun for once, but hoping and praying that maybe I'll be able to not be sick or be punished for actually having excitement in my life.

It could be worse. Rebellion. I will rebel, but not so that it puts my life in jeopardy. I will go and dutifully take my 7:15pm round of antibiotics so that in about two hours I will begin to feel nauseated and two hours after that my stomach will begin to churn and I'll finally feel better after one hour of vomiting. I know TMI, but live in my world for one day ... your spirit would have been broken long before now. I want to be awaken from this nightmare. Maybe one of these days, I'll wake up and realize the last 12 years of my life have been one gigantic nightmare and it will be 1995 again.

What would you have done differently? I would have demanded answers 12 years ago to my health problems.

March Madness (woooo)

I am a HUGE basketball fan. I love to watch college basketball. My life is in front of the TV from the beginning of the season until the Final Game in April. For those that know me in person OR have been reading the blog for a while, you know I am a HUGE Carolina fan. Some question why ...

My family has always been fans of Carolina so it was ingrained in me from birth, but my true loyalty came when I was treated by Neurologist at Carolina when I was a child. I also worked concessions at Carolina when I was in middle & high school for both football games, basketball games and even worked there for an occasional concert. I wasn't too happy with the physicians at Carolina in 1995 when I was a patient prisoner at the hospital, but still my loyalty remained with the UNC basketball team. My most prized possession is the UNC National Championship Shirt from 1993 that is signed by the starters (including my absolute favorite Eric Montross).

Well today is the day of the Final Four and Monday is the final Championship game. The last three games of the season are played and it is then that I go into a deep depression (earlier if my most favorite team loses). There is no more basketball until the air gets crispy & the leaves start to change colors.

I will never forget the start of the 08/09 season. I had my PICC Line. I got to see Tyler Zeller play in his first game and I saw Eric Montross from the back. I hope that this is the year I will never forget not only for the health gains, but as the year that Carolina takes the 2009 National Championship.

Bracketology is something I take very seriously. I look at each time and decide who is going to make it from 65 to 32 to Sweet 16 to Elite 8 to Final Four to the Championship game. Who has what it takes to make it all the way and who is going to shock us? I have been following basketball for sometime and have respect for some of the NCAA and other teams .. I just don't like at all.

Most people either like or don't like a team because of either their players or their coach. It comes down to a final group of four teams. I do not know much about Villanova (whom we are about to play), but I have always had respect for Michigan State & UConn. I am so pleased that those two teams are among the final four this season. I am so happy that my Carolina Heels are able to play in the Final Four game as well. They've had some good games and some bad ones. They've had some unfortunate injuries in the game and some come backs by players that we thought were out for the season.

I am pleased to be a life time fan of the Carolina Tarheels and am about to put on my Carolina gear and watch with enthusiasm. I am sure there will be some cheering and yelling (and perhaps even some cursing).

I hope my team can pull this off. It will be a difficult game and a tough one as the Heels battle with the 'Nova team.


Update: Michigan State and Tom Izzo are headed to the Championship Game.

Update: Kudos to the UConn team for coming in and watching the UNC/Nova game. Classy team there.

Update: UNC 49 Nova 40 at the half. Come on Heels. Keep up the momentum.

Update: UNC 75 Nova 63 with 4:20 to go. Come on Heels. Let's go.

Update: Carolina Wins and Goes to Championship Game Monday Night! One last game.

Go visit Serious Life Magazine to push them over a million views for March edition.

Conflicted Lymie

I have felt conflicted as a Lyme Disease patient in the last few months. Since I am able to do more and more "normal" things, most people wouldn't even realize that I have Lyme Disease unless I told them. It is hard to fathom that less than two months ago a PICC line was sustaining my life. I am ever so grateful to every single person that had a hand in my current state of wellness. I am ever so grateful to God for helping me when my quality of life was nill and also now that my quality of life appears almost normal.

What's conflicting about that you ask?

I find that I am not quite "normal" and I'm not quite a "Lymie." I'm in a Lymie Limbo so to speak. It's very difficult because all of my Lyme friends that were in treatment well before I got started ... they are all still sick. Some of them even more sick than they were then. They all call me lucky and blessed and .. well .. NORMAL.

I feel like my body is the game Jenga. Where we're taking pieces from the base and adding to the top. That each piece we pull may or may not be a load bearing piece and that if you pull the wrong piece that my body will just come crashing down. It's important to be careful with every piece and use caution at every move.

My inner soul is aching right now. I ache because I don't feel apart of my most inner circle anymore. I feel as if (and this is probably not even true, but they are my feelings anyways) they don't think that I can understand what they are going through now because I am "well."

The other part is that I am so extremely good at hiding my feelings, my physical pains, my other ailments ..that unless you know me really well ~ you don't know that I still have *some* problems. Albeit those problems aren't even close to where I was two years ago ... It feels more like I did about 7 years ago when I was just having *problems* every so often.

So then when I do complain a bit about a pain here or a pain there, I get the whole "you NEED to be back in treatment." (to which I just want to scream .... )

Well ya know, my brain starts to get RUDE. I immediately think hateful thoughts towards the spiral things that have RUINED my life and unfortunately even to the person that suggests that I NEED more treatment. Then I think, you know what .. I am FIGHTING these little spiral things myself. My body is fighting it off itself. I have an IMMUNE system now and my body is doing what it needs to do to get rid of the Lyme Bacteria.

How do I know?

Because before whenever I was around anyone that was sick (IE a cold, flu, etc.), I would get sick. It did not matter how I protected myself ... I would get sick. Now ... not unless I douse myself with germs (IE when I went to the hospital to visit my granddaddy). Also if I have one or two bad symptom days, they don't last into weeks. My window of "Uh oh" is only 5 days. If I have 5 bad days in a row, I get the pit in my stomach "Uh Oh."

In March, I had 4 total "bad" days. Those were not in a row. Compared to March of 2007 where I had 30 out of 31 bad days. That means in the whole month of March in 2007, I only had ONE good day (and that's not a good day like I have now, it just meant that I hadn't thrown up and wasn't dizzy and didn't sleep for the majority of the day when I wasn't working).

But still even with only 4 bad days, I'm in Lymie Limbo. A Lymie that can't be normal and yet a Lymie that feels somewhat ousted by the Lyme community because I am not complaining every single moment about ailments that I have. The "normal" don't want me around if I do complain about my ailments and the Lymie don't want me because I am somewhat normal. Yes I know that this is all a falsehood created by my own imagination, but it feels somewhat true.

I guess I just need to know this:



Sorry this is so long, but I wanted to get out my Lymie Limbo emotions because I've been feeling like this for a couple of months.