Welcome Senators

This blog chronicles my experiences as Lyme patient. It has been almost two years since I first walked into the office of an Integrative Medical Physician. If I were telling all the differences between an Integrative Medical Physician and a regular Medical Physician, I would be typing all afternoon. This is why it was so difficult to write a succinct letter to the North Carolina Senate.

Over the last 22 days, I have been working on writing 50 letters to the leaders of our state. My first draft was FIVE PAGES long. My second draft was exactly THREE pages long. I finally got it down to a one page letter and here we are today. In my letter, I posted my blog address hoping that a few Senators might be interested in reading more than a one page letter.

So here I am after addressing and stuffing all 50 envelopes. I am about to send them on their way. And before you ask, yes I did remember to stamp all 50 envelopes. :) Thank goodness for self adhesive stamps and self adhesive address labels.

Welcome Senators to my blog. Feel free to comment or email me per the address in the letter. I look forward to hearing from you. Here is the link to the post on Living the Lyme Life

And my regular blog readers: I look forward to keeping you updated on which Senators care about our Integrative Medical Physicians.

*** Updated ***

2-28-09 I received an email from Senator John Snow of Cherokee County North Carolina supporting the Integrative Medical Physicians. Thank you Senator Snow!

3-13-09 I received a hand written letter from Senator Rouzer of Johnston County North Carolina supporting the Integrative Medical Physicians. Thank you Senator Rouzer.

Inspirational Thursday

Here I am to Worship!

Scroll on down for the big "Reveal" of my Make-over!

Cutting out four years

So today I cut out four years worth of hair. The last time I really got my hair cut was in 2005. I've had it trimmed since, but never a "real big" hair cut. So I took in a photo of me from 2005 and said that I needed a "new me" to go with the "new health." The reason I've not had my hair really cut since 2005 is because it stopped growing. In the last year, it has grown in major spurts.

So for your viewing pleasure: Pictures of the before and after. Sorry for the blurry before photo, but I was the only one able to take the picture and this was the best I could do.

Very Nervous (this was on Sunday afternoon .. photo courtesy of Missy)

Thursday February 26, 2009 5 am

Four years worth of torment in the floor. Look a small dog!



The Big Reveal!

And in getting rid of four years worth of hair ... I got rid of the ONE Antibiotic that knocked me on my Hind Parts. Just opening up the bottle brought back Nausea and almost made me vomit. So it is with pleasure I bring you a photo of me pouring it out! Good Bye Septra!

Shocked Patient

Yesterday I went in for the MSA test. I took in 10 POUNDS worth of supplements to test. The goal was to see which ones I needed to eliminate in my daily regiment and which ones I needed to restart. Also which ones that I am not on that I need to start.

So I took in a bag that literally weighed ten pounds. It had over 20 supplement bottles. They tested each of these and also tested about 20 others once we were there. So in all, I could have been taking upwards of 40 different supplements (most needing to be taken 3 times a day). So at the very most it would have been like 120 things a day (*gasp*), but likely to be less than that.

So first she tested each point to see how my overall body was doing. When I first started most everything was on the high range of the yellow (there are three colors .. Green (good), Yellow (not so good) and Red (really bad)) and some were in the red. Well I had the pleasure of having most things being in the low to medium range of yellow and even had one thing in the Green. That was my first shock. I was pleased with this. Even though they are in the yellow still, they are improving.

Then they tested each supplement to see if it "grooved" with my body or rather whether I needed it. Of my over 20 bottles, only 9 are needed for me to take. They tested 20 others that I didn't have and I only need 2 of them. I left the office flabbergasted about this. ONLY 11 things. The two that I have to take are on order so I will have to wait a while until they come in. So that means until they arrive .. only 9 have to be taken.

The other really cool thing is that I've been given a "No Tests, No IV's, No Appointment Order" until MAY! Of course this is all depending on whether I maintain the level of health I have now or improve. If I start to get sick again, I've been ordered to come in immediately.

I am cautiously optimistic. I want to cheer and yet I am cautious. I remember this was the time last year when I thought I was going into the "Transitional" phase of treatment. I thought I was getting well. I had been given a reprieve of things was down to like 8 days of Antibiotics a month and then I started backsliding big time. So while I really want to be thrilled and excited, I am a bit nervous as well.

Since before Thanksgiving, I've been operating at 90 percent with only a few days dipping down into the 60's. Look out for a picture soon. One photo will be all the supplements I took in for testing. The second photo will be the supplements I have to take the next few months. The difference is amazing.

Today I went in for one last blood test. THE blood test. The Western Blot to see if my bands would light up like a lightbulb. I am praying for this actually. I want a CDC positive. I want to be able to frame that sucker up with my picc line and shove it (oh that's not nice of me, but come on after 12 years of misdiagnosis and 2 years of treatment for Lyme ~ for a total of 14 years of unhealth) into the faces of the doctors that told me that it was all in my head.

I doubt it will come back positive, but what the hey it's worth a try right?

You are so quiet

So a while back, I added this wiget that shows where my "viewers" are reading. I know it's not entirely accurate because it shows my computer from a place where I do not live. BUT ... Why so quiet. Today alone there were 18 visits from different cities (that was an hour prior to reading the blog). I know one was me and one was from my friend Missy, but .. where oh where are you. Oh rather .. why aren't you commenting. Let's see if I can URGE you out of hiding.

I'll give 200 blog points to the wittiest comment about THIS photo:

I have visitors from:

Alabama
Arizona
California
Colorado
Connecticut
Florida
Georgia
Iowa
Idaho
Illinois
Indiana
Kansas
Kentucky
Louisiana
Maryland
Massachusetts
Michigan
Minnesota
Missouri
Mississippi
North Carolina
New Jersey
Nevada
New York
Ohio
Oklahoma
Oregon
Pennsylvania
South Carolina
Tennessee
Texas
Virginia
Washington
Wisconsin
Washington DC

and 16 other countries (HI Alice in South Africa for one of them)
Come out come out wherever you are:

Not me Monday!

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.



I was not so busy that I completely missed putting in my Not Me early this morning.
I totally did not still have my star up on February 22, 2009. I did not have to remind my husband to take it down because he's on the ball about everything.

Here is a list of things I did not do:

1. Order a slice of Carrot Cake after completing my lupper (lunch/supper for those of you not in the know) even though I was completely stuffed.

2. Eat a bit over 1/2 of the slice of the Carrot Cake and then reach over to eat off my husband's plate because his vanilla ice cream on his dessert looked soooooo good.

3. Purchase a purse for the first time in over a year because I'm a woman and a woman buys purses more than that.

4. I did not oversplurge on a baby gift because I don't overspend (see number 3 .. since I don't buy purses but every few years .. why would I ever overspend on an item that a baby would outgrow in less than a month?)

I am sure there are many other things I did not do this week, but I can't think of them now.

5. I did not ask my friend Missy what I should blog about and she most definitely did not suggest that I post a picture from the crazy photo shoot we did NOT do yesterday because she did NOT visit me.

6. We did not spent 15 bucks (tax included) on a small bottle of shampoo because I most definitely do not have a Dandruff (aka Yeast) problem.

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!

Jennifer's Lyme Life (bump)

**Updated** March 15, 2009
For those of you that are just learning about my Journey, go to these old blogs to see how far I've come.

My Diagnosis
My Therapy
A day in the life of a treatment
My PICC Line Story Part 1
My PICC Line Story Part 2
Grey's PICC Line Story
November 15, 2008 Update
Mercury Toxicity (My Mercury test came back negative)
Aluminum Toxicity
PICC Line Removal
Two weeks post PICC
Supplement & 2 year anniversary
March 15, 2009 Update

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

Two week post picc

So it has now been a whopping two weeks since my PICC line was pulled. That begs the question: How am I feeling? Since it was pulled I have felt a range of emotions. Fear, Joy, Happiness, Emptiness, Anxiety, Thrilled (to not have to have an umbrella for light rain). So many words can be used to describe the last two weeks.

Joy: It has been simply wonderful to be able to take a shower or bath whenever I want without having to run to my husband first for him to put on the Dry Pro PICC Line Cover. In fact, there are many days when I took two baths and showers just because I could. It has been Joyful to be able to hug my friends without fear of being hurt. It has been wonderful to touch my left ear with my right hand over my head. Now why on earth I'd want to do that .. I don't know, but the point is that I CAN!

Happiness: I am happy that I don't have to taste Saline & Heparin or feel the fluttery chest feeling when I am getting an infusion. I've not made the opportunity to spend the night somewhere, but if I did ... I wouldn't have to worry about lugging gloves, alcohol swabs & Heparin and finding a compassionate person that would be willing to do my nightly Heparin shots in the PICC Line.

Fear: What if I have a set back to which it was a mistake that it was pulled. What if it doesn't heal properly? What if ... Yes there were tons of What if's, but is it healing properly .. yes it is. In fact, the hole looks really really good. It almost looks as if there was never anything there to begin with. My biggest fear is the set-back one though. AND ... my blood work on Tuesday. For the first time since May, I'll have a needle going into my veins. I am scared. Go ahead call me a scaredy cat, but I had a tube in which they could draw blood any time they wanted. I never had to worry about passing out or pain b/c the blood draws never hurt. ON Tuesday .. it will hurt. I may pass out. :(

Emptiness: How can I express this ... My nightly ritual has become routine. It feels empty not to do the things I needed to sustain life. I feel empty not having a tube in my arm. It feels weird not having to restrict my movement or my weight lifting capacity. I was "pushing" something on the floor with my feet and arms the other day until I realized I could actually lift it up and not "fear" that I would pull out the tube. It felt weird .. and empty.

Anxiety: Goes hand and hand with fear. Basically I have severe anxiety about future blood draws/IV's and about back sliding. Also about a potential future PICC Line. What if .. there are those two little words that give anxiety every time ... What if I need another one in the future?

Mainly though ... I am THRILLED. I am thrilled to be able to do all the things I haven't been able to do. It is thrilling to be able to walk out in the rain without fear that I will hurt my PICC Line or even worse my body. I am thrilled that I can go hang out with people without fear that they will hit my arm and hurt my line ... I am thrilled to be able to go bowling if I want (and I will .. just haven't done it yet) and walk on the beach without fear and swim & hottubbing and .. I could go on and on with all the reasons I am thrilled that it is gone.

But, How am I doing?

I am doing okay. I had a rough couple of days last week that really scared me. On Sunday I woke up dizzy and miserable. I felt like I was in someone else's body from a year ago. I had a headache and my muscle twitches were off the hook. My "fear" was becoming reality. I was taking a step back. I woke up throwing up in my mouth what tasted like acid and it scared me. After taking a deep breath (or four), I went back to sleep. Monday was not good either. I felt very much unconnected to my body. I felt as if I wasn't really there. My eyes would glaze over and I'd forget where I was. I knew that if I felt like this by Wednesday I would have to call my doctor. Tuesday I woke up feeling a bit better, but I was still feeling dizzy and muscle twitching. By Wednesday this disconnection feeling was pretty much gone. So now here I am with pretty much the twitches. I haven't had another spell of throwing up acid and my headache isn't ther either.

So now .. I am doing okay. I go back on Tuesday for another MSA. THis will help determine which supplements I need to be on. I am almost certain I will restart Vitamin D, a Borrelia Series (a new one for me), OSR (a new one for me), Fiber stuff (old one for me), VER (old one for me), Adrenal Pep (old one for me) and a bunch of others including one for yeast. I haven't had a single supplement (except the Fiber stuff) in two whole weeks. What a weird feeling: a good feeling, but weird one none-the-less.

An update on me!

songs to the right

Okay so some of you may absolutely *love love love* the songs that are to the right. Some of you may not like them so much. Well .... I find them hysterical. Once while driving (probably riding actually since I never drive us anywhere and he does all the driving), one of the songs by The Fray came on. My friend has the ability to make fun of just about any song on the radio and he began "singing" one of them. I think I about peed on myself that day. It would have made the jug-o-pee test easier has he been around to make me laugh so hard that it created the urge to go.

Anyways, I needed a bit of a chuckle yesterday so I added four The Fray Songs on my profile so that I could get a chuckle when I needed them. :o)

Inspirational Thursday

Edited to add that I am very happy this morning. My Tarheels played again last night and won. They even added Tyler Zeller to the game. He hasn't played since November because he broke his hand. We thought they might not play him this season, but Zeller had differnet ideas. He is going to be a Monster on the court. Love him already and I've only seen him play like 3 times. (once was in person woot woot).

Now onto your regularly scheduled Inspirational Thursday.

This song got me through many dark days. Whenever I was at my lowest point, I would listen to this. It was lift me up. I would sing it over and over and over at the trepidation of my husband. He didn't mind the song ~ it was my singing! :o)

Praise you in this storm
by Casting Crowns

I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.

Chorus:
And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm

I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away

Chorus

I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth

**** If you've missed my previous Inspirational Thursday posts: Here they are for your listening pleasure

If you've missed out: Here are my other Inspirational Thursday Posts

Week 1: It is Well
Week 2: Who Am I? Casting Crowns
Week 3: I Can Only Imagine Mercy Me
Week 4: Mighty to Save Hillsong

Without further ado: Praise you in this storm

Friends

I have the best friend ever.

Seriously, this guy has seen the best and worst of me. He knows what makes me laugh, tries to stop me from crying before I start and most importantly he cares about me no matter whether I'm laughing or crying or my mood is somewhere in between. Other than my husband, he is the one person that I know I can call day or night and he'd be there in an instant no matter what he was doing. Today, I spent the afternoon with my best friend.

I do that a lot, but since I got my PICC Line I spent very little time with my friends. I felt like I just needed to kind of hide away from them and stay to myself. I hate doing that, but I felt like it was important that they not see me with a tube in my arm. Now why I felt the need to do this around the guy that has seen me at my absolutely lowest point, I don't know. But I did not see him a lot. However since January, we've hung out probably 5 times. (keep in mind that we used to see each other at least once a week sometimes as often as 5 times a week ... so 5 times in 2 months is actually not a lot of time for us)

In any case, it's back to the days of good ole J & J time. I love my J time. It takes my mind off my problems and we just focus on laughter. I honestly think if I said half of the stuff I say to anyone else, they'd look at me with a half cockeye look and say "Do what?" But he gets me. He gets my humor and even if he doesn't ... he sure puts on a good act. That's what best friends are for. I am very lucky to have him in my life. We've been friends for over 15 years.

Random words that remind me of my very best friend. :o)

Happiness, Smiles, Laughter, The Fray (much hilarity ensues if we hear any music by The Fray), Angus Beef, Hugs, Love, Snorting, Food, Music, Important, Caring, Family, Music, Silly, Dogs, Couch, Did I mention Music yet?, Tarheels, uh Music? :o) :o) :o)

In any case, Tell your friends that you love them. If yours are half as important to you as mine are to me, it is necessary to remind them how much you care. If you don't, they are liable to walk around this world not knowing how much they matter.

My Fave posts

Here are some of my favorite posts. :o)

Climbing the Lighthouses - September 18, 2008
How I met my husband - September 23, 2008
Forgiveness - October 8, 2008
Football Friday Fun - October 16, 2008
Past, Present and Future - November 6, 2008
I am so rich! -November 23, 2008
Remembering Eva - December 10, 2008
I am so happy! - December 21, 2008
My year in Review - December 31, 2008
Snow in NC - January 20, 2009
Time Travel - January 21, 2009
WGI show - February 15, 2009
My Not Me Mondays - February 16, 2009

Do you have a favorite post of mine? If so lemme know what it is ... :o)

Not Me Monday!

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.


This was a doozy of a week. There are so many things that I did not do.

Because I never ever take pictures of things, I did not document with photos how my PICC line hole looked every day. No way would I ever do that. I most definitely did not post them on facebook for my friends to see.

Day 1

Day 2: Fingers were NOT for Emphasis. :)

Day 3: You do not see THREE fingers up for the third day. Absolutely NOT.
Also you do not see a rash around the PICC Line hole. I am NOT allergic to latex in Band-aids. It is not possible that I'd be so stupid as to use something I have a sensitivity to in order to cover my insertion hole with. *DOH*

Day 4: Your mind is playing tricks on you again. I am not holding up four fingers to emphasis that this is the 4th day post PICC removal.



Day 5: You do not see a sign here that indicates Day number 5 with a "hello" too my Not Me Monday Readers. There is no way because I always have my husband take the picture and this would indicate that he was not home. There is no way I'd do a self-portrait just for the purposes of this blog!

I did not go to Bojangles with my husband on Valentine's Day for our dinner either. What kind of idiot would want to go there for a special date with the hubby? We also did not head over to Target and Staples to find colorful envelopes so that I could address 50 letters to senators. I do not advocate anything so I most definitely would not write 50 different people to encourage them to support NC Integrative Medical Doctors and certainly would not spend over 100 dollars in supplies to get my letters noticed! Stay tuned next week when I share with you what I did not do this week. In the mean time, go visit my old Not Me Mondays:

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!

WGI

So for those that don't know: I used to be in the Color Guard. In the fall, Color Guard members perform in the Marching Band. In the winter, we perform inside in the gym. Well it is appropriately enough called Winter Guard. My pictures aren't that great because in Winter Guard you aren't allowed to use flash photography for two reasons: It messes up the performers and it distracts the adjudicators (aka judges). I've been on the other end of flash photography and every time I took a picture I made sure the flash was OFF.

So I went to a Winter Guard show yesterday. On one hand, I had a blast. It was so relaxing sitting over here:

It was also nice to talk to old guard friends. I ran into so many people that I knew from when I was marching. It made me a bit sad that they were either still marching OR coaching. By sitting in the stands, it made me sad that I was unable to do this:

Tossing Sabres:

Spinning Flags:
BTW: This guard is called Assembly Line. They are a group of people that have graduated high school. This group has been "Assembled" since 1986. One member has marched every single year. I just love her. She's so sweet & funny. We got to talk at length yesterday. Another member is my best friend's sister. I could join if I wanted I'm sure, but with all my health problems over the last year it has been impossible. I sure do miss it though.



Tossing a Rifle:



Getting on the floor and dancing like this:


I even missed setting up and being asked "Is the Guard ready?"

I've been to several guard shows as a spectator and every time it gets a little easier, but how I just stare at the rifles and want to pick it up. How I really want to wear a cute and vibrant uniform and get in front of the crowd ... So much so that I almost put on THIS ... walk into the school and say "I'm here for the Chattahoochie Winterguard. Can you tell me where they are setting up?" just to see what the ladies at the front door would say!

Assembly Line's show last night courtesy of Greta Patterson

September Lyme Posts

I wrote this a while ago. It was never completed, but it posted today anyways. Oh well. Here it not in it's entirety.

The First Post: What my blog is about!

Next I wrote several blogs on Tick Borne Illnesses. Here they are:

Tick Borne Part 1
Tick Borne Part 2
Tick Borne Part 3

I also wrote some on my diagnoses and therapy.

My diagnosis
My therapy
A day in the life of my treatment

I talked about my PICC Line in September 2008.

PICC Part 1
PICC Part 2
"Anniversary with PICC"
Problems with the PICC
PICC line story at the hospital
More on my PICC

I also had some "itching" and "rashes" in September of 2008

Itching
Why am I itching?

I saw my blood under a really cool microscope.
Bradford Microscope

I talked about my emotional roller coaster
Mood Swings


And also saw the amazing documentary:
Under Our Skin
A review of Under Our Skin

Going to WGI

If you can't be with the one you love on Valentine's Day, Go do something you love! That's my philosophy. So I am going to go watch something I loved for a decade in the 80's/90's. I'm going to a Winterguard competition. And for your viewing pleasure .... a picture of me with my crazy blue eyes! I'm thinking about doing something with my crazy hair soon. It's getting too difficult to wash, dry and straighten. Any ideas?

Spousal Compromise

So one day I wanted to do Wii Fit and my husband wanted to watch Football. Here is how we solved THAT bit of drama ...

Feeling Empty

I am going into this blog post knowing that it is going to sound completely crazy, but hoping that someone understands. I have been feeling a bit empty. This last week I have been alone. I feel like something is missing. I am doing the best I can and I know it's hormones. I know I'll feel better soon, but for now ... I feel empty.

All day I tried to be the opposite of how I felt. I spent all day singing this song:



I was being silly just trying to feel better, less empty.

I guess I never realized how much a part of my life the PICC had become. It's been 6 days since I took a shower with a cover. It's been 7 days since my husband put saline & heparin into my line and I coughed b/c I coughed EVERYTIME he put Heparin in my line. It's been 6 days since a tube went up my arm and into my heart.

My heart is empty. Why am I feeling like this? I think part of it is that I am scared for the future. Will my health stay as good as it has been? I think the other part is that my husband has to work all weekend. I try to pretend like it doesn't matter and that it doesn't hurt, but truth be told ... I prefer not to be alone, empty.

I will feel better tomorrow. I always do after I pour my heart out for the "world" to see. Tomorrow I may go to a WGI show and Sunday the plan is to go bowling with a co-worker.

That would be two more things off my list for post picc line activities. I think I'll feel better when I get them all done.

Here is the list:


1. Take a nice long shower without a picc line cover
2. Find a hot tub somewhere and enjoy it.
3. Swim in a pool.
4. Go Bowling.
5. Walk on the beach
6. Go to a Winterguard show! :o)
7. Spin a rifle. (Okay maybe not .. but it would be fun.)
8. Hug my friends without fear of being hurt
9. Sleep on my right side without hurting

I have done number 1, 8, and 9.

This weekend I plan to do 4 & 6. My husband is planning a small trip for us to the beach sometime in march so that I can do 2, 3 and 5. I probably won't be able to do number 7 unless I have an old one in the closet!

Anyone have any random fun ideas that can bring me out of the dumps? :o) Heck who knows .. I may even delete this message after it's up after a few days.

Inspirational Thursday

Just so I don't have to go post crazy today:

Go Heels! They won a very exciting game of basketball last night against the "Boo" Devils.



Might to Save by Hillsong


My favorite part of the song:

So take me as You find me
All my fears and failures
Fill my life again
I give my life to follow
Everything I believe in
Now I surrender



If you've missed out: Here are my other Inspirational Thursday Posts

Week 1: It is Well
Week 2: Who Am I? Casting Crowns
Week 3: I Can Only Imagine Mercy Me

my sock drawer

So a few weeks ago in this post, I mention my "lack" of sock drawer obsession. Well after many requests by Kellie ... Here it is in all it's glory. You see that "lack" of something in part of the drawer ... that's where my bolder holder sits, but I chose to remove that for the blog!

And as a BONUS:

Now .. this next thing someone just needs to nominate me for "What Not To Wear" because .. well .. here it is:

Those shirts go in ONE Drawer. I have another drawer with just as many shirts!

My LLMD Appt

I saw my Dr on February 7, 2009. This is the appointment in which my PICC line was pulled. I found out lots of things that are disheartening, but also left with hope as always.

The reason I have not wanted to post exactly what I am getting on this blog or any other public forum is for political reasons. Some doctors do not believe that Chronic Lyme exists. Some doctors do. Some doctors that do believe in Chronic Lyme believe in strictly Antibiotic treatments and others believe that there are some alternate methods of treatment. I have a doctor that believes in BOTH methods. The more he learns about Lyme & treatment the more he believes in an alternative path of treatment.

In September, I had a live blood analysis done. I have never asked about other patients that have had this done. However in my appointment on Saturday, my doctor mentioned that the doctor that does this Live Blood Cell Microscope now comes to his office every other month. He now clears his day for these appointments so he can see exactly what is going on with his patient's blood cells.

He said in January there were 5 patients that had this Live Cell done. Three of those patients used the treatment like I used. This Experimental Alternative treatment. Two of the patients used regular antibiotics. Apparently two months prior, they both had about the same amount of borrelia in all three forms of bacterial (L shape, spiral shape & cyst shape). Well in January (IF I am understand correctly) .. the 3 patients that did the alternative method ... there were VERY FEW Cyst forms and their spiral loads had decreased dramatically. The two patients that had done antibiotic therapy .... had LOTS OF CYSTS and lots of the other types too.

What does this have to do with MY appointment you ask? Well, I just found out that my doctor is having difficulty getting the alternative therapy. The doctor that invented this along with another physician in Texas are in trouble with the medical board in Texas because they have been using this treatment. The doctor that invented this & the doctor in Texas have had very high success rates with this treatment. I do not know the whole break down of the situation, but either way it is making it difficult for doctors to get this treatment.

As it was, the compouding pharmacy that made this drug wouldn't send it to North Carolina. So my doctor had to order it through another doctor who would sent it to the few patients he had on this protocol. Well now that doctor has closed his office making it impossible for my doctor to get his hands on these treatments.

THIS TREATMENT HAS SAVED MY LIFE!!!!! I am so upset that not only will I not be able to finish this treatment, but that others that have just begun this treatment won't have access to it either. This is why I was so not wanting to talk about it b/c it's so controversial that if anyone got wind of it .. it would be unavailable. I'm frustrated b/c it's gotten me so far.

So what is in my future? For now, we will stop (obviously we have to b/c he has no more of this drug in his office) and will look at an alternative to use. First in a couple of weeks, I will do the MSA test. This is the test that looks at my "energy" and decides which supplements balance in my body and which things I do not need. It has also correctly identified that I had heavy metals, bartonella, babesia, parasites, candida, and borrelia before any tests picked up on it.

I will not be on any Antibiotics. We are going to be working on getting rid of the damage that was caused by Lyme Disease. I will also start on some fiber to get some of this mess out of my colon (how loverly).

As long as things go as planned, I will not have another IV for 6 months. Our plan for now is for me to start on this stuff called OSR. I don't really quite understand it, but from what I do gather it helps the body make Glutathione. With that, it will help my body detox from Heavy Metals and maybe other things (my guess). Then in 6 months, I will have another IV Chelation Challenge. By that time, my veins should have healed from the PICC line and it will have been well over a year since my veins were accessed by IV other than the PICC.

If my metals have decreased, we know that what we're doing is working. IF my metals have increased or stayed the same, we will know that what we're doing is not working. It will be determined at that point whether more IV Chelations are needed. Of course at that time I am guessing if it is determined that I *do* need more of those ... OR I'm backsliding and am needing IV treatments and my vein access is not great ... another PICC will be discussed, but we're both hopeful that will not be needed.

Also I am going to get another Western Blot test just to see how my bands line up (I really want a CDC positive to SHOVE in my regular physician's face).

So that's all for now.

Not Me Monday!

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.



On Wednesday when it snowed, I did not mess up writing the date on my car. I did not put 1-2-09 only to try to "correct" it by putting 2-4-09 on top of it.

With the exception of post Anti-microbial treatments, I have the memory of an elephant. Tell me something once and I remember it for a life time so this means I absolutely did not forget on Thursday the code to get into my work place and almost cause the alarm to go off by plugging in my ATM pin code instead.

I absolutely did not panic one bit when the phone rang for me at work and begin to tear up when I heard my nurse on the other line. I did not rush down there to discuss what she said on the phone because there was no way I could not be attentive on the phone with her. And with previous said "memory," there is no way I could forget what she wanted to talk to me about either.

I am such a compassionate person that I would never ever ever consider bringing a cake to my doctor's office when he was having a weight loss support group meeting right after my appointment. I most certainly would never ever use the term "Fatty Patty" when the head huncho of said support group was walking behind me. (oops)

I have never been a "hoarder" of momentos therefore I would NEVER EVER ask to keep the PICC Line after it was pulled and I most certainly not take pictures of it and the oozy goozy yucky mess that was on my sterile dressing after the removal. Nope, not me.

And I would never consider being silly while my husband was taking photos of me on the last day of having the PICC Line. I would never ever "strike THIS Pose."

Stay tuned next Monday for another Crazy Not Me!

For my previous NMM's click on the links below:

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!

2 down!

1. Take a nice long shower without a picc line cover ~ CHECK ~

9. Sleep on my right side without hurting ~ CHECK
Sorry no pictures of this for ya! :o)

2. Find a hot tub somewhere and enjoy it.
3. Swim in a pool.
4. Go Bowling.
5. Walk on the beach
6. Go to a Winterguard show! :o)
7. Spin a rifle. (Okay maybe not .. but it would be fun.)
8. Hug my friends without fear of being hurt

Love is Pt 1 (Bumped)

I wrote this back in December. I feel it needs bumping. I am reminded by an old dear friend of mine that you need to tell people you love them often. I LOVE ALL OF YOU MY DEAR FRIENDS. I am blessed to have all of you in my life whether I've known you 33 years or only 3 minutes. For those that are reading that I knew in Elementary School, you all mean more to me than you will EVER know. Words can not express how happy I am that I have found a lot of you once again. :o)

Blog readers: I am blessed that you have found me. It is my hope that I am able to give those of you with Lyme Disease & other Chronic Illnesses a bit of humor & hope that all will be okay. God has plans for all of you. Please comment and often. It brightens my day to see new comments. Everytime I see the map has new "stars" & red circles, I smile. It reminds me that I am loved by friends, family & random strangers that just happened to google key words that brought my blog to their lives.

Without further ado:

Life Lessons on Love that I have learned over the last 32 (er now 33)years. Oddly enough, I learned most of them in elementary school.

Elementary School Lessons:

* True love is pushing someone on the swing sets even in really really cold weather (Kindergarten)
* Love can be found in the honey part of the honeysuckle. (1st grade)
* When you love someone, you open up their ketchup packets for them when they can't. (1st grade).
* Love is giving someone your last Green M&M because they know it makes you run faster to get to their house (2nd grade)
* Love is asking the teacher if your friend can sit in the front row because she's short after realizing she couldn't see the chalkboard because see couldn't see that far away.
* When you love someone, you must allow them to hear you sing out loud at least once. (1985 - We Are The World)
* Love is sharing the very last pancake at church (3rd grade)
* Love is the feeling of the wind going through your hair when you're going down a very rusty slide in your Sunday best. Hate is landing in the mud puddle at the bottom of the slide. :) Ooops. (4th grade)
* Love is removing an Easter Egg out of it's hiding place 2 months after Easter. (4th grade)
* Love is painting your girl's room blue ... Carolina blue. (again don't remember, but boy it was pretty).
* When you truly love someone, give them bubble gum machine rings (5th grade)
* Love is sharing your 'Now & Laters' right NOW instead of waiting for Later. (5th grade)
* Love is wrapping up a friend's birthday present in "nesting boxes" so that she has to open up 10 packages before getting to the actual gift (5th or 6th grade)
* Love is not freezing your best friend's bra at an over night sleep over (6th grade)
* Love is wrapping your arms around another person's neck and not wanting to let go (6th grade)
* Love is asking "Will you go out with me?" and even when the person says "we're already out," they say it louder ... "NO will you go OUT with me?" (6th grade)
* Love is inviting a girl to a dance and not yelling at her when she is too shy to do what they were there for ... dance. (um don't remember which year this was er maybe 5th or 6th)
* Love is holding onto the front bumper of your car after it is being hurled into oncoming traffic of a very busy highway because somehow someway the little brother in the car made it start going backwards. Thanks Dad :)
* Love is cutting up an old bridesmaid dress to add in a crotch to a dance costume that is way too small (wanna know the story to this one? I believe my 6th grade year of dance our costumes all came in way too small. Mine went below my chest so my mom cut up one of her dresses and cut through the crotch of my dance costume. She then sewed in another crotch so that my dance costume would fit). Thanks Mom. :)
* Love is searching for a very special acorn for your friend, giving it to her and telling her not to throw it away because it would connect you forever. True love is still having that acorn at 32. (but my bad memory can't remember who gave it to me - if you read this and you gave me that acorn ... I still have it in my jewelry box from when I was a kid along with a bunch of bubblegum rings)
* Love is hiding in your best friend's attic in order not to move away.

IT'S OUT!!!!!

IT'S OUT! IT'S OUT! IT'S OUT!

I was told one time that if you're really excited about something you should say it three times! Here is one of the last pictures taken with my PICC line still attached. We're both saying "goodbye." this was about two hours prior to the removal.

:o)

My PICC line was removed this morning as planned!

It went very smoothly. My doctor told me to take a deep breath. He said as I exhaled he would pull it out. By the time I released the breath, he was done. I did not feel a thing. It is uncomfortable now, but I suspect that will end soon enough. It's weird. I feel a bit empty. So as my doctor was about to throw it in the bin, I asked if I could keep it. He said yes and packed it away for me to take home.

Elevated Aluminum

So my Heavy Metal tests came back. They also tested some other "minerals" and metals that aren't considered to be "heavy metals" but that can cause some health issues if they aren't removed from the body properly.

They test for 11 things. Of the 11 things they tested, only 3 things came back out of the reference range. Two of the three things were just barely off the reference range, but the third thing was almost in the very elevated levels.

First things first: Lead was one of the ones in just slightly elevated levels. Most of the times you don't get symptoms until your Lead levels are very high. Lead poisoning can cause Central Nervous problems, Digestive Issues and Renal System problems.

The second thing that was slightly elevated was Nickel. I really couldn't find much data on Nickel poisoning, but it can cause Headaches, Dizziness, Vomiting, Nausea, Irritability, Dry Cough, Sweating and others. Considering my levels aren't that high, I doubt that Nickel poisoning is the cause of my symptoms. It's more than likely: Lyme, Bartonella, Candida or the other metal that was elevated.

The one that concerns my doctor is Aluminum Poisoning. Aluminum Poisoning can cause SEIZURES. This is the one that jumped out at me. What if back when I was having Seizure ... whether it was caused by Aluminum Poisoning. Interesting to think about? I think so. Forgetfulness, Chronic Sinus Problems, Dry Mouth, Muscle Weakness, Bone Pain, Altered Mental Status, Bone easily fractured, Anemia, Immunity impairment, Growth Retardation in Children, headaches, and others.

I bolded the ones that I've had. And who knows about the Growth Retardation .. I am only 61 inches tall. Maybe I could have been taller ...

What causes this?

Tough to say what caused it in my case, but Aluminum is one of those that just builds up with every use. Antiperspirants can cause Aluminum poisoning. So can other home products that contain Aluminum (like pots & pans, anti-dandruff shampoo, toothpaste, city water, utensils that contain aluminum). Some Vaccines have Aluminum and what's worse ... for me ... Cheese! Some Cheeses contain Aluminum.

Can ya'll hear me screaming from your computer? You should.

What will I do about this?

I'm not really sure yet. I've had two chelations now. I will find out more on Saturday at my Appointment.

Celebration Part 2

My PICC Line is being removed on Saturday February 7, 2009.

May "she" rest in peace. She has treated me well for the most part and helped me from getting stuck 15 times a week (2 or 3 treatments a week times the 6 times it would have taken to get an IV started).

Born: July 17, 2008
Removal/Death: February 7, 2009

Youtube removed video on Youtube! SO no more "Celebration" song. Sorry guys.

Inspirational Thursday

Another of my favorite songs.

Post Picc Line

A huge hint about the Celebration post!

I've been contemplating what all I want to do when I get my PICC line removed. There are so many things that I decided to make a list. Though I don't need a reason to make a list. I'm a list maker by nature.

1. Take a nice long shower without a picc line cover
2. Find a hot tub somewhere and enjoy it.
3. Swim in a pool.
4. Go Bowling.
5. Walk on the beach
6. Go to a Winterguard show! :o)
7. Spin a rifle. (Okay maybe not .. but it would be fun.)
8. Hug my friends without fear of being hurt
9. Sleep on my right side without hurting

Let's Celebrate!

There is reason to CELEBRATE!!! Stay Tuned for more information ...

Celebrate good times, come on
(Let's celebrate)
Celebrate good times, come on
(Let's celebrate)

There's a party goin' on right here
A celebration to last throughout the years
So bring your good times
And your laughter too
We gonna celebrate your party with you

Come on now

(Celebration)
Let's all celebrate and have a good time
(Celebration)
We gonna celebrate and have a good time

It's time to come together
It's up to you
What's your pleasure

Everyone around the world
Come on

(Yahoo) It's a celebration
(Yahoo)

Celebrate good times, come on
It's a celebration
Celebrate good times, come on
Let's celebrate

We're gonna have a good time tonight
Let's celebrate, it's all right
We're gonna have a good time tonight
Let's celebrate, it's all right

Baby

We're gonna have a good time tonight
(Ce-le-bra-tion)
Let's celebrate, it's all right
We're gonna have a good time tonight
(Ce-le-bra-tion)
Let's celebrate, it's all right

(Yahoo)
(Yahoo)

Celebrate good times, come on
(Let's celebrate)
Celebrate good times, come on
It's a celebration
Celebrate good times, come on
(Let's celebrate)

(Ad lib)

Come on and celebrate, good times, tonight
(Celebrate good times, come on)
'Cause everything's gonna be all right
Let's celebrate
(Celebrate good times, come on)
(Let's celebrate)...

Pig's Flying twice

Monday the weather forecaster said "snow" was predicted for Tuesday & Wednesday morning. Being the "realist" I am, I said "No way it will do this twice in one year." However in a small way, I hoped that Murphy would work with me here .. :)

I said all day Monday ... if it does SNOW, it will be a few flakes. Well Tuesday morning came and went and yes .. it was a few flakes. Well yesterday everyone at work was a buzz. "It's going to snow. It's going to snow." Well again I said "Well maybe a few flakes more, but I doubt it will even cover anything."

I woke up this morning ... TO SNOW!! Okay so it barely covered anything, but I did have to do a good bit of dusting to my car.

Hopefully it won't prove deceiving on the roads because I'm off to work!

So Angry

This post is probably not going to be very coherent and very long and for that I apologize in advance.

For most Chronic Lyme Patients finding the answers to their medical condition is often years in the making. I'd say more times than not .... it takes a person saying "Oh have you ever thought you might could have Lyme Disease?" OR "I heard about this doctor that can figure out what anyone has." OR "Your symptoms sound suspiciously like mine before I was diagnosed. I have Lyme Disease." OR "I know this person that was as sick as you are now. They have Lyme." OR something similar.

I got the "Did you ever think it could be Lyme Disease? I am being treated for it and you should check it out. You have a lot of symptoms that are on the Lyme Disease check list." So then I checked it out and got in touch with the Lyme Disease Foundation that forwarded me to an appropriate Lyme Literate Medical Doctor (my particular physician also specializes in other things such as Heavy Metal Toxicity & Nutritional Deficiencies & other things so I knew he wouldn't have "Lyme Blinders" on and only assume that I had Lyme Disease).

Integrative Medical physicians are often under attack by their medical boards ... whether those medical boards are in North Carolina or other states. I know of several physicians (even those that treat other things than Lyme Disease) in North Carolina that are under investigation. In fact not so long ago, we had one physician that did treat Lyme (as well as AIDS/HIV) that moved from NC to SC because the NC medical board put so many restrictions on him that he was unable to practice the way he needed to in order to help his Lyme patients improve.

I have also gotten wind that another physician has closed practice in NC because of the same thing. This physician did not have enough financial funds to move his practice to another state and he was also a bit older than the first Lyme Doctor. This 2nd doctor may or may not be a Lyme Physician. I just know that his office recently closed because my doctor's office got some of his supplies.

Other states are having the same issues. I also found out that another physician decided to close his doors and most recently today ... I found out that a physician in Maryland was recommended by his lawyer to stop treating all his Lyme patients because FIVE cases were currently under review by the Maryland Medical Board. If they prove that he isn't treating the way that Infectious Disease Society says he should treat Lyme Disease, he could have his medical license revoked. The thing is that that particular group of people do not believe that Chronic Lyme Disease exists. They believe that Lyme is "cured" after only 60 days of antibiotics at the most.

Now I have been in treatment since February/March of 2007. That is way longer than 60 days ... I can not imagine how sick I would be had my antibiotic regimen been cut off at 60 days. No doubt in my mind, I would be in a wheelchair or a coffin by now had my LLMD decided that May of 07 that I was "cured."

It scares me to think that my doctor is under the radar of the North Carolina Medical Board. I know he's been under suspicion before for not treating the "standard of care" for other things. Because of that, I have to sign a paper everytime I go in saying that I want treatment. I know my physician doesn't do the things by IDSA's "standard of care." That is MY CHOICE! I do not want the "standard of care." That "Standard of Care" got me no where for 12 years. And now that "Standard of Care" is going to cause a man who spends more time caring about his patients more than probably his own family ... to jeopardize his medical license.

This angers me more than I can even coherently write!!!

What can you do?

1. If you're in North Carolina: Go to this website and join the fight for our North Carolina Integrative Medical Physicians.

2. If you're a Lyme patient or know about a Lyme patient, go to this physician's blog. Support him by writing letters and calling! Who knows some of you might even be seeing this LLMD yourself ... or have considered seeing him ... His practice is in danger! His patients are in danger. Please help him!

3. Another for NCer's ... Go to this website and email them if you have an ELISA and Western Blot test that is CDC positive after January 1st of 2008. Just recently, North Carolina has declared that if TWO people in a county have these two tests as CDC positive ... they will declare it an endemic area for Lyme Disease. Please please please ... email them with your stories from North Carolina so they can determine whether you would help meet this criterion. In order to improve the quality of life for those with Lyme Disease it is vital that we get as many counties in North Carolina deemed "endemic" as possible. Only then will the IDSA realize that there is Chronic Lyme Disease!!!!!

Thank you for your time and hopefully I made myself as coherent as possible. This message and this blog would NOT have been possible had I received "standard of care" treatment in North Carolina.

Mandy from Under Our Skin would not be ALIVE if it had been for "standard of care" treatment. Please I beg of you ... don't let my friends die because of idiotic infectious disease doctors and medical board drama. Don't let our doctors go under because of lack of knowledge by the medical board & infectious disease doctors. Scroll back up if you have to and see how you can help.

Go Visit Charlie!

Updated with Links included:

Charlie is a beautiful little boy with HLHS. It's a condition where he was born missing the left side of his heart. He loves to see the little red dots pop up on his Cluster Map. Well his "year" anniversary of the cluster map happened and all his red dots disappeared. Would all you go visit him so he can get his red dots back?

Make a comment and that will make his day brighter. Though to see the smile on his face, I don't see how he could get any brighter! Tell him Jennifer from North Carolina sent ya!

I'm not even sure how I found him, but my friend Patience had a son born with the same condition. Unfortunately with other complications, Issac passed away 5 months after he was born. I am pleased to announce that Patience has recently informed everyone that she is now pregnant with a little girl.

This afternoon, I will post links in here with the links to Isaac & "Baby girl Leino" websites.

Not Me Monday

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.

This week has not been a doozy at all. I absolutely did NOT run up and down my street to catch the DHL delivery person to send my Urine off to the lab. I did NOT go off on him and explain the urgency of my package arriving on time due to the bodily fluids that the package contained. I did NOT tell him that if it did not arrive in time, he would be personally responsible for paying $154.00 for me to have a second treatment and another $60.00 for the test to be re-run. I was NOT flattered in any way when he told me he thought I was a 12 year old kid running around the yard the day before I turned 33.

On Wednesday, I absolutely was not stressed out in any way to go to my best friend's new apartment. Under no circumstances would I have to sit in my car for over 30 minutes before being removed from the car by my friend over anxiety from the drive. I was not embarrased in any way to have to call my husband to convince me to get out of the car before further embarrassing myself to call my friend to have him come down to get me! Not me, never, absolutely not. :O

On Thursday, I absolutely did not eat a huge canister of cheese balls in one sitting. That would be absolutely horrible for my body and since I am so health conscious, I would never consider doing that. You know what else I didn't do? I didn't spend all Thursday afternoon talking to one of my blog readers about Lyme Disease and the inaccuracies of the Western Blot & Elisa test. I didn't send her a whole email of Lyme doctors in her area just in case she wanted to get a 2nd opinion on her illness actually being Lyme Disease instead. :-}

On Friday, I did not do something spontaneous and go out to eat with an old friend

um .. correction ... pain in the ass of mine. I most certainly did not jump at the chance to drive somewhere and eat dinner breakfast food for dinner. We did not reminisce about band & guard and did not spontaneous bust out into "Oh Yeah" from the Twix Commercial because it was a winterguard tune.

On Saturday, I did not laugh so hard in Target that I almost peed in my britches. Speaking of britches, you know I did not purchase a pair of britches off the 75 percent rack because they were the cause of said laughter. Then I most definitely did not go around to find a shirt that would match the britches for my Halloween costume this year because it would so be the perfect 1980's outfit. I also did not pull out my camera in the middle of the store to take a picture of pink sweatpants. Those that know me in person from HS know that my "style" was sweatpants and an oversized t-shirt ~ nothing more and nothing less. My husband and I did not have a grand time taking pictures of me in said Shiny Gold Pants & Off white/gold shirt. Here is NO PROOF whatsoever of me doing the silliness. I know I know: 1987 called and they want their pants back.


One last thing that did not happen on Saturday. My husband was certainly not referred to as "Dad" when we were checking out at Target. I did not slap him on the back and say "yeah Dad" and snort at the same time. The check out woman did not say "Husband?" with a very confused look in her eye and when I said "I'm actually 33" .. she did not and I repeat did not grab my hand and force me to look at the customer in line behind us. She did not say "can you believe she's 33?" She then did not say "You Go Boy" to my husband as we were walking away from the cash register. I did not tease him the rest of the day. :o) Dad Dad Daddio.

Laughter Heals

Here is a small clue about the hilarity that ensued for one of my "Not Me Mondays." When 2007 turned into 2008, I promised myself that I would smile every day and make one other person smile as well. Laughter counted for the "Smile" because can you laugh without a smile? Well on Saturday January 31st, I laughed so hard that it make others look. Of course in turn they tried to look away, but started laughing a bit when they saw what I had in my hands. You'll have to wait until tomorrow for the "full story" on the funniness, but here is a partial view of one of the many pictures my husband took once we brought home the item that caused a melt down of laughter in Target. I am still laughing just thinking about it! :o) Can you guess what they are? AND MISSY .. NO GUESSING FOR YOU. You've heard the story & seen the pictures! :o) If I've told you the story ... don't guess. that wouldn't be fair to my 15 readers that don't get to talk to me on a daily basis. :o) You can click on it to make it a tiny bit bigger.