Cinco de Lymo - the one about teasing

Today is the 5th day of Lyme Awareness Month. The other day I said that I feel like I am in Lyme Tyme Land all of the time.  I eat, breathe, sleep, talk, email, facebook, blog Lyme Disease.  It's Lyme Tyme all the time.

Today, I'm going to a wedding.  I bet I'll get asked at least once while I'm there about Lyme Disease.  I'm the Lyme Lady!  People sometimes make fun of me either straight to my face of behind my back because I carry information with me about Lyme all the time.  But in the end, I'm the first one they call to ask a tick related question.  I'm the first one they think about when someone they know or loves gets diagnosed with Lyme Disease.  I'm the first one they think about when someone they know or loves finds a tick on themselves in the middle of the night.  I'm the first one they want to talk to because they know I'll know the answer.

Yesterday a friend from work called. This friend does not make fun of me.  This friend has watched the documentary Under Our Skin.  This friend found a tick on her significant other's back and knew enough from me to remove the tick carefully and clean her SO's back thoroughly.  Then, the next day she sent me a message asking me to call her.  I did.  She described the tick.  I calmly told her it was more than likely a Lone Star tick, which are popular in NC.  I reminded her of the tick removal procedures and some of the symptoms he should watch out for over the next few days.  I encouraged her to take him to the doctor, but also don't want to cause panic.  He has an appointment anyways on Monday so they should bring up the tick bite and any unusual symptoms.  I told her about the tick having numbing agents.  These are things that just rolled right off my tongue and I didn't have to think twice about any of them.

However, thanks to Lyme Disease Association --- I have a handy dandy tick card.  I will share with you that website later in the month.  But, I wanted you to know that ... while we may made fun of for being in Lyme Tyme Land all the time --- we are the first one you think of when you find a tick.  And if being made fun of for a few minutes because I carry these cards all the time is the price I have to pay to help you in your time of need and to save you a life time of illness --- then it is well worth it.  Keep on teasing.  Keep on making fun.  I'll take it.  And then when you need somebody, you need somebody that knows what you need to know, call me.  I'll answer your questions and then when I get off the phone --- I will breathe a sign of relief that your teasing caused you to remember the person to call in  your time of need and then pray for you or your family member that the tick that got you won't be as bad as the tick that got me.

Thanks for reading.  

**** Now onto today's scheduled post:

Dr. Jemsek is one of the world's renowned LLMD (lyme literate medical doctor).  Here is his speech in which he "speaks the truth" about Lyme Disease at the "In the Light Lyme Disease Gala in Charlotte NC.  Before Lyme became endemic in the area, he was a specialist (and still is) in HIV/AIDS. He may have been the first ot recognize HIV/AIDS in NC and then LYME Disease.  Since he was "evicted" from his medical practice in Charlotte, he moved to South Carolina.  He was "asked to leave" and he now has a practice in DC where he treats Lyme patients from all over the world.  Please take the time to listen to Dr. J speak the truth. Dr. J discusses the controversy surrounding Lyme Disease and what action needs to be taken to provide patients with better care.  He compares Lyme to HIV/AIDS.  He talks about doctors that quit on patients.

http://youtu.be/V-lHDA863TM

Day 4 of Lyme Disease Awareness Month

It is the fourth day of Lyme Disease Awareness Month.

I forget that there are many acronyms that we use daily that we don't even have to think about, but that those without Lyme or newly Lyme diagnosed won't know.   Some of those are LLMD, ILADS and IDSA

LLMD stands for Lyme Literate Medical Doctor.

There are two kinds of doctors that "treat" Lyme.  Some are IDSA and some are ILADS.  In essence, IDSA doctors don't know the truth about Lyme.  ILADS are Lyme gurus that know about Lyme and co-infections (ticks give other things than just Lyme).  So if you go see a doctor, you want to make sure that they are ILADS affiliated.

ILADS - International Lyme and Associated Diseases Society

IDSA - I like to "pretend" that it stands for I DON'T SEE ANYTHING or I DON'T SAY ANYTHING, but it  actually stands for Infectious Diseases Society of America.

The reason I'm sharing all of these acronyms with you is because I wanted to share with you a video from the most recent ILADS conference where LLMD Dr. Horowitz spoke on a co-infection (one of the other things that Ticks can give) Babesia (also known as Babesiosis).  Dr. Horowitz is a top notice Integrative LLMD.  He is PRO Lyme Treatment is in one of the best in the nation for treating Lyme Disease.  The video is about 11 minutes long and starts off with someone introducing Dr. H.  Dr. H speaks french for the first minute or so, but then switches to English.

I hope you enjoy the video and I hope you find it educational.

http://youtu.be/fRBXpOPMxNE

Day Three Lyme Awareness

https://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/lyme-resource-educators.shtml

So, you've seen tick removal tips and the HULU Under Our Skin. 

Next up a video from 1992! 

Things have changed since 1992, but it is sad that in 1992 they knew as much as they knew in 2007 when I got diagnosed.  The biggest part that I had trouble with in the video were regarding transmission (how long the tick is attached and whether it is transmitted in another way other than an infected tick) and to flush the tick down the toilet. 

Lyme Prevention

Yesterday, I shared with everyone how to view Under Our Skin on Hulu. 

Today, I want to share with you important information regarding tick removal.

It is important to take the necessary precautions to help prevent any tick borne illnesses by using small pointy tweezers and grasping the tick as close to the head as possible and pulling straight out without yanking. It is always a good idea to keep handy a tick kit including small pointy tweezers preferably with attached magnifier, non-latex gloves, small pencil, alcohol prep pads, zip lock bags, tick identification and removal information card.

1. It is important not to touch the tick when removing it so avoid handling ticks with uncovered fingers. Use tweezers designed for removal. If you absolutely must use your hands, protect your fingers with non-latex gloves, plastic or even a paper towel.

2. Take the tweezers and place them around the area where the mouth of the tick enter the skin.

3. Using a slow steady motion, pull the tick away from the skin. Be careful not to jerk, crush, squeeze or puncture the tick.

4. After you remove the tick, place it directly into a Ziploc bag or other sealable container. Wash the area around the site of the bite with soap and water. Use an alcohol pad to disinfect it even further.

5. If possible, keep the tick alive for a month in case symptoms of a tick borne illness develop. Place the tick in a labeled, sealed bag with a lightly moistened paper towel. Label the bag with the date of the bite and the patient. For your own protection, tape around the Ziploc part of the bag to prevent the tick from exiting the bag.

It is important NOT to flush the tick down the toilet.  Some people suggest to do this, but ticks can survive a good flush AND the water.  If you want, you can send the tick to IgeneX for a Tick Test.   It's about 300 bucks for them to test 5 different diseases, but keep in mind that they only test for one strain and each disease may have  hundreds of strains. So even if your tick comes back free and clear from disease, it may not be. 

There is controversy about how long ticks need to be attached for transmission.  *most* sources say that it takes at least 24 hours of attachment to transmit a disease.  However at the last ILADS conference, they talked about a research study they had done with a Lyme infected tick and a mouse. They injected radioactive die into the bacteria and then the tick attached to the mouse.  Within some amount of time, the bacteria had already left the blood and crossed the blood brain barrier. It was something ridiculous like 30 minutes.

Lyme Disease Awareness Month

Today starts Lyme Disease Awareness Month.  My plan is to connect everyone to one link every day.  I may write disclaimers about why I like it or what I think is inaccurate, but I want to share with all of you different links.  If someone asks me about Lyme Disease, the first thing I say after saying, "Yes I was bitten by a tick" is if they have seen the documentary Under Our Skin.  There are several ways to view Under Our Skin.  Some are free right now and some are not. 

You can view Under Our Skin on HULU at this website:  www.hulu.com/watch/268761/under-our-skin

You can also purchase the DVD at this website:  http://www.underourskin.com/store

You can purchase one DVD for home use.  Or you can purchase a DVD for community use.  Or you can purchase more than one and loan them out to people, or just give them away.  If you have never seen it, watch it on HULU first.  Then when you fall in love with the stories and get angry at the controversy and have feelings you never thought you'd have, buy one, buy three, or buy 10. 

Whatever you do, watch it. Then, share it. 

Wat

Mrs. A Nose

I mentioned on Monday how my nose was hurting and I thought it was probably acne or something like that.  Well yesterday, I went to my LLMD's office because the pain increased tenfold overnight.  It was (is) excruciating.  I was hoping to get a HBOT treatment, but my LLMD's office went through some remodeling and they haven't put the HBOT back yet.  They decided to take my blood to check out my CBC and chem panel and while they were accessing a vein they gave me a 3 hour IV.  The funny thing is that this IV always takes 3 hours.  It never takes less, but sometimes takes more.  Well, it only took 2 hours for it to run yesterday.  It didn't seem to be dripping any faster than usual, but I guess it was. 

Well by the time I got home, there was a message from one of the ladies saying that my LLMD wanted me to go to my regular doctors to get my nose looked at.  He thought maybe I was presenting with a sinus infection, although I typically don't present this particular way. Keep in mine, he never saw me so he was just going based on what others were telling him.  Well I woke up this morning and the pain was worse.  So I called my PCP to see if they had an appointment.  They did, but the first one was 30  minutes prior to another appointment and the second one wasn't until 5pm.  I decided to take my chances on Fast Med. They have always treated me well.

Today was no exception.  I pulled up their website and "got in line."  This is a great feature.  I can show up and there be 5 people in line, but if I got in line before they showed up then I'm ahead of them.  I arrived and there was only one person in front of me (but I had new paperwork to fill out since I haven't been there in 2012) so I waited a little bit.   Finally I saw the PA and she brought in her little nose looker.  I told her what was going on and laughed off that I'd probably leave with her telling me I had massive boogies. She laughed, but said that "boogies" wouldn't cause the pain, swelling or redness I was experiencing. 

She took a look and said that I had a serious looking staph infection in my left nostril. I came "this close" to asking, "What does  a funny looking staph infection look like?"  She sent me home with two prescriptions and instructions.  First prescription:  Doxycycline.  Second prescription:  Bactroban Nasal.  Instructions:  Warm compress on nose several times a day.  Doxycycline, been there done that.  Two hours away from supplements.  Stay out of the sunlight (artificial or otherwise).  Drink full glass of water.  Take on full stomach, but not with dairy.  Makes me want to vomit. 

However, I have never used Bactroban Nasal.  So I pulled out the handy dandy guide that came with it.  So, Instructions say, "Twist off cap" and "apply one half in one nostril" and "apply 2nd half in other nostril" and "massage nostrils for one minute. discard tube."  I unfolded the paper that came with it and began to read.  I'm reading along when I see this ....


BACTROBAN NASAL is indicated for the eradication of nasal colonization with methicillin-resistant S. aureus.

Let me repeat the last words:

methicillin-resistant S. aureus.

Now let me give you the commonly known acronym. 

MRSA!

Seriously?  I have MRSA in my nose.  *sigh*  I went to the bathroom to check out my nose and applied 1/2 of the tube into my "clear" nostril and then applied the other 1/2 in the "mrs. a nostril."  Then I attempted to squeeze my nostrils together as indicated.   I cried.  I was having to inflict pain on myself on purpose.  After a full minute of massaging (and the clear medicine oozing out of my "clean" nostril), I went to the kitchen and took my Doxy.  I gagged. 

Leave it to me to mistake MRSA for a ZIT!

I'm very glad I didn't wait another day or two to head to the doctor.  It could have had serious consequences.  On another note:  My follow up for Lyme has been moved up to next week since I've been having so many symptoms here lately.  I highly suspect that the words PICC or PORT will be used and I will be starting oral and IV antibiotics soon.  I will be very interested to see how I react to Doxy.  The known and well used Lyme Disease antibiotics. 

T minus three weeks

We should be moving into our new home in three weeks from today.  We can't wait.  We've packed up almost 50 boxes so far.  We began with the fragile stuff in the kitchen yesterday.   It was bound to happen, but I broke something today. Something special to me.  It was one of the champagne flutes (that we drank punch out of) we used at our wedding.  It's not salvageable.  Two huge pieces broke and then a third piece smashed to smithereens. 

To top it off, I'm in pain.  I've been in pain the last three days.  It is going to sound silly, but my nose hurts. The left side of the nostril both inside and out.  I'm sure it is probably some kind of acne either on the outside of the nose that I can't see or on the inside of the nose that I can't see. Either way, it hurts some kind of bad.  So bad that it's making the rest of my body hurt. 

School is almost finished for the semester.  T minus one week, 2 days for school.  T minus 3 weeks for closing of the house. 

Our reason

The reason we want to move is not because we want a new house.  The reason we want to move is not because we want to almost triple our house side.  The reason we want to move is the reason I am up at 1:29am.  It's the ATV's and the dirt bikes and the shot guns and the partying at 1 in the morning.  It's the neighbor that says the other neighbor has to get control of his kid and then his very own kid riding an adult ATV without a helmet through their yard.  It's the other neighbor's kid revving up his ATV at 1am in the morning in their driveway (which coincidentally happens to be right in front of our bedroom window).  Did I mention this is the same neighbor that said that same kid needs to have parental control? Why let him do that at your house?  Tell him to cut it out!  Oh yeah, they're having a party which means they are all drunk and don't care that someone is making a loud noise at 1am to wake up the entire subdivision. 

Call the Sheriff you say?  Well we've done that.  More than once.  It doesn't help.  We've sent letters, emails, VIDEOS to our Sheriff's office.  We've called when they were making noise.  They stop.  Sheriff leaves.  They begin again.  We call.  Sheriff arrives. They stop. Sheriff leaves. They begin again. The closing on our new house is May 14th. I can not tell you that MAY 14TH can not come quickly enough.  My husband and I are losing our patience. I am tired.  My eyes are stinging from exhaustion and my heart is on fire from anger.  I do not like to be angry. Angry doesn't help a situation.  So not only am I angry, I feel guilty about being angry and that makes me feel even worse.  On top of it I"m exhausted because I haven't slept well in years. We joke about going to an "open house" of our house on the weekend, taking our mattress, going to our new room just to get one decent hour of sleep!   PS other people in our neighborhood have called the Sheriff too.  It just doesn't help!

So that is the reason we want to move.  We are done with the redneck partying neighbors who feel they can do anything they want at any time of the day or night.  And yes, we've spoken to the neighbors.  We've spoken nicely to them when we're not so angry and unfortunately not so nicely to them when we are angry (that was years ago when I had my PICC line and hadn't slept for DAYS and I finally fell asleep and they revved their ATV right in front of our bedroom window -- my husband snapped and ran across the street to yell at them in a not so nice manner. I was mortified, but they stopped. Didn't matter, I couldn't fall back to sleep because of the pain I was in. 

Dear God,

Please let us make it through the next 23 days without anger and frustration.  These emotions don't help the situation and they don't help my health.  Please let us make it through the next 23 days with limited noise from the neighbors.  It's a little late now (in more ways than one), but please can you see that our neighbor's heart changes for the better over the next 23 days just so that we can reduce our stress?  And if it is at all possible, allow the mortgage company to work even faster to get us in earlier because it would be nothing but miraculous for that to happen.

Amen.

Here it is! Our *almost* house

Our *almost* home! I just have to share! I'm getting so excited.

The kitchen and you can view the dining room on the right there.

Here is the living room. The door is for the 1/2 bath downstairs (you'll see the full master bath in a moment). The open space goes into the kitchen and down the hall is the laundry room and the master bedroom/bath. Out the two windows in the living room is our back porch. Out the door on the far side is the sun room.

We'll walk through the bedroom to get to the place I'll relax the most

Home Hunting Part 2

God can work miracles. I believe this with my whole heart. I believe that He has the capacity to CURE me from Lyme Disease, but I believe that is not in the plans just yet. God has a plan for all of us and for me it to educate others on the devastating effects of Lyme Disease and give Him the glory.

This isn't about Lyme though. This is about the story of house hunting and how it all works out in God's time. So my husband and I had been talking about refinancing our house, but I kept putting it off. Then he put it in terms I could understand. By refinancing the house, we would save $300 bucks a month. That is a couple of IV treatments or a few HBOT therapies, etc. So we began to put the refinance in motion. Things went through and on Friday March 23rd, we signed the documents to refinance the house.

Now the next morning on the 24th, we woke up and something convinced us to look at a home close to our work. So we drove 45 minutes to this house and went in. I wasn't thrilled about it, but it was pretty. I really liked the "Loft" area of the house, but nothing to write home about (no pun intended). That night, it was really noisy in our neighborhood so we drove around to neighboring neighborhoods and drove down one subdivision. I saw a house that had an open house sign on it, but the house was locked up. We decided just for the fun of it we would go back the next day when it would be opened.

On March 25th (Sunday), we walked into this house and I kid you not I felt like I was at home. In fact I joked with another family that was there when they walked in, "Come on in to our home." Yes, I jested, but who knew that it really would happen? God did. The relator had to take that family down the street to open up another home so we had a good 20 minutes in the home to ourselves. I oohed and aahed over every little thing. She returned and we talked to about the home. We walked down to the other house and when we walked in that family said, "Come on into to our home." We laughed and looked around.

We took a second look at the first home and then came home. I couldn't stop thinking about the house. We thought at the very least we could look to see whether there were other lots available knowing that this house would probably be bought pretty quickly since it was only one of three left and only one of two that was move in ready. Keep in mind that this all happened less than 48 hours after refinancing the first house.

We came home and talked about it. We drove by the house again and again. We were listening for neighbor noise. There was none. It was miraculous. The next weekend, we popped in on a Saturday. We looked around and took a couple of pictures. We came back the next day with a check for earnest money. This happened on Sunday April 1st. This was all happening very quickly. In that short week, we had talked to two financial gurus. One that had worked with us on our refinance and the guy that the relator had recommended. Well our guy said he thought it would be best to wait until July. The other guy said he would do it as quickly as we wanted, but there was only so fast that we could go because of all the requirements of the lenders.

So from April 1st to April 4th, a lot of things went wrong. First we were told we had to have a certain amount for down payment and a certain amount set aside for both mortgages. This amount was astronomical, but we knew we would have it by a certain date. Then on April 3rd, we got an email that stopped us in our tracks. Now instead of having to have an astronomical amount in our bank we had to have triple that. Instead of having two months of both mortgages in our account, we had to have SIX months of mortgage. Any normal person would have said, "Forget it." They would have given up.

But not us. We kept at it so in 24 hours, we came up with a way and our meeting was set for April 4th. We were given until the 10th to get everything together and he would send it to the underwriters on April 11th. We were told that the first time our stuff went to the lenders that the underwriters would probably deny our request and that we would just resubmit everything in another month. We were also told there would be a huge list of demands. Instead of worrying, I prayed.

April 11th, the man sent our stuff off. We waited and then, we did the unbelievable. We accepted that this was going to happen and began to box up some things in our current home. Things that we don't need to use for the next month. I packed up 12 boxes and my husband packed up nearly the same amount. We went to our house again this past weekend and it felt even more like home. We met our neighbors. This morning we were sent an email. An email that said the underwriters approved our request AND there was only TWO things on the list. Those two things were immediately sent to him and shortly thereafter we got an email saying that we would CLOSE ON OUR NEW HOME MAY 14TH!

Now let me put this out there.

March 23rd - close on refinance

March 24th - look at home in big city near work

March 25th - see dream home in current city

During week of March 25th - contact lenders and find out how they can help.

March 31st - go back to home to see if still have same feeling

April 1st - give earnest money check

April 3rd - email with "bad" news, but we overcome challenge to have our meeting

April 4th - meeting and give paperwork

April 7th - go see house again

April 11th - paperwork is sent to the lenders and underwriters

April 17th - send email to check on status

April 18th - given approval and closure date of May 14th

Now we were told by a really smart financial person that these things don't get approved on the first run. We were also told that there would be a lot of hoops that we wouldn't possibly be over to overcome.

Now granted, we don't have the keys in hand yet, but I am here to tell you that God works miracles.

I can't wait to share pictures. I pray that the rest of the process goes smoothly and nothing kinks up, but I have faith.

Happy One Dozen Years

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! :)

We have really come along way from the people we were in this picture.

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

We've come a really long way from this too:

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

And twelve years ago today:
The first day of the rest of our lives

Now here we are

12 years later
The glasses cooler
The tan is gone.
We've both gained weight!
But in sickness & in health
we are together
silly as ever.

It took one dozen years for me to get diagnosed (1995 to 2007)
It has been one dozen years since we got married (2000).
Five years of undiagnosis before we got married and
I've now been diagnosed for Five years.

I say year number 12 is going to be the best year yet.
Yes, we are trying to buy a new home.
I won't be sharing pictures of new home on the blog until
we are settled and have all the paper work officially signed.

Lil bit about me

This is a long one so I'm going to break it down in Parts like I did the background story so if you need to stop reading and can remember where to start up again.

Part One

I realize that I might have a few new readers that would like to know a little bit about me. There are some links over on the right hand side of the blog about my background and story. So if you are reading this from reader, make sure to click the link and see the actual blog to see those links to the side. Jennifer's my name and Lyme is my game. I was born and raised in North Carolina and there I still live to this day. I like to live in small towns. The first town I lived in was small enough that I remember when we got our "first" warning light. That light was later switched out for a full fledged stop light (on it's side no less) after we moved.

I believe that I got my initial Lyme in Oxford North Carolina, but that's not the only thing I found out near that part of North Carolina. I found my husband. Although we never would have guessed we would wind up dating, much less married. We met at a bowling alley through a friend of mine in December of 1994. We tolerated each other, but nothing more. Then distance made the heart grow fonder. I moved away to learn at Western Carolina University. I came back home and we hung out and I realized I was quite taken by this handsome fellow, but distance was a factor so I kept my mouth closed for quite some time. When I discovered that he liked me just as much as I liked him, we began to date in September 1997 and got married April 15, 2000 (HEY that's coming up!).

We have two dogs named Dexter and Ginger that are our "kids." Dexter is a black & white lab mix who likes to bark and Ginger is a red short haired dachshund that likes her crate. We rescued both dogs. My husband is into computers and I work in the early childhood field. Currently I am taking a couple of classes at a local community college that will allow me the opportunity to be a Director or Assistant Director should I ever desire to take that step up the career ladder. We are currently trying to buy a new home and it's exciting because there is a space I can use as an Advocacy office.


Part Two:

But let's back this train up. Sometime in August of 1995, I was bitten by a tick in my backyard getting laundry. Yes, we had and used a clothes line! We did have a dryer, but my mother preferred the "old fashioned" way of drying clothes and sometimes I'd be the runner out to get the laundry from the line. A few days later we were shopping for college items and I had an itch behind my ear. I kept scratching until finally I asked my mom to look and sure enough there was a tick. She pulled it out and we kept going. Didn't really think much about it at all. Then a few weeks later, I started having trouble.

Fast-Forward to "In sickness and in health." My health problems only got worse with time. I had a breast cancer scare that turned out to be nothing and then had emergency gall bladder surgery. Shortly after the gall bladder surgery, I was bitten by another tick. I call this the year of the doctors. Almost immediately after the tick bite, I was overwhelmed with flu like symptoms. I was so fatigued that I could barely stay awake and this included driving to and from work. It was terrible. I landed in Urgent Care and was diagnosed with Lyme. The full back ground story can be found here: Background Story. It goes into full detailed from the first tick on through diagnosis.

Part Three

I was officially diagnosed March 1st 2007 by an ILADS LLMD. The first year of treatment was tough. I was on three or four antibiotics at a time. Although it's difficult to remember all of them now I remember trying Amoxicillian, Doxycycline, Minocycline, Zithromax, Biaxin, Flagyl, Levaquin, Septra and I think there were a couple others that I can not remember. Just thinking about them makes me sick to my stomach.

At the same time, I did IV Vitamin C (25 grams mostly, but did increase to 50 grams) and other supplements. There are too many to name. Nearly a year after my diagnosis, we stopped all antibiotics and began a journey on a "mystery" IV. This was an anti-microbial IV consisting of three parts. The first part was High Dose Vitamin C cocktail (50 grams). The second part was IV Dioxychlor and the third part was Sulfoxime. I haven't really talked about it. In fact, I don't even know if I've given the names to any of the parts other than the Vitamin C cocktail.

To quickly explain: IV Dioxychlor is no longer made, but it's counter part Bio Chlor Dox is. If I remember correctly, it was an oxygenated therapy that killed bacteria/viruses/candida/etc. That part of the IV ran pretty quickly, but it is the part that started to make me feel terrible. The third part was Sulfoxime and it was bright yellow in a glass tube that hung up side down. This is the one that made me feel absolutely horrible. It also killed all those different things. I feel that this cocktail is what got me into remission. I would do it again in a heartbeat if it were available. I also got IV Glutathione occasionally.

Part Four

Because I was getting so many IV's, n July 17, 2008 I was rushed to get an emergency picc line when my veins were no longer usable. I had the PICC from July 17th to Funerary 7th and it gave me a lot of trouble. (a lot of posts regarding said trouble are in the side bar from 2008 to 2009). It was pulled when we could no longer get the IV therapy and I was fairly stable.

Since then, I've had a sporadic IV's of Vitamin C. Some other problems that I've had are I had extremely low Ferritin levels so I received some Iron IV's. I also had some heavy metal poisoning so I had Chelation to pull out Aluminum. I've battled with low Vitamin D. My last labs finally my Vitamin D had pulled out of the toilet and had finally stabalized. We'll see if I can keep that up with alternating 8,000 IU and 10,000 IU daily. I've also done HYPERBARIC OXYGEN THERAPY. I feel that it has helped tremendously, but obviously it is not a cure. It has given me tremendous relief with my migraines and breathing difficulty.

Part Five:

I've also suffered with extremely low Cortisol levels which had me taking Cortef for some time. I stopped after my last labs because Cortef made me feel so lousy and we redrew labs for that the other day to see if my body is finally producing it on it's own without the medicines. I know there is a bunch more, but go over to the side and you can review any of my old posts.

My biggest joy was the day I turned up CDC positive on my IGM. This happened almost two years to the date I started treatment. Since I've had so much trouble lately and my doctor is considering more oral antibiotics and possibly IV Rocephin, we really need some "data" to back up our choices to the insurance company. He ran the new lab (Immunoscience I think is the lab) and we're hoping that it will be positive because then the insurance company can't say that I don't have Lyme. They may only pay for 28 days of therapy, but that's 28 days more than they'd pay if I don't have proof. They may pay for 28 days regardless, but a positive test would go a long way to encourage them to pay.

I hope this helps explain everything that I've been through the last 17 years.

Another thing from Thursday

It took two sticks for the Blood Draw and IV. :( Two different people tried. They were fighting over who would have to stick me. I mean, they begged the other person to try.

The one lady said she didn't want to make me cry. The time before she witnessed me crying. I rarely cry at the doctor's office. I just try to tough it out. So she didn't want to try because she knows I'm a difficult stick and the last time it took two tries. However, I convinced her she could and I wouldn't cry even if it hurt. ;) So she decided she wanted to try "the spot." This is a vein that I always say don't use. This vein is tiny and small and shallow. This vein hasn't been "gotten" in about four years. I don't think I've let anyone even try it in over a year. Well, honestly it looked the best out of any that I had. So I decided to let her gave a stab at it. Well, she stabbed and said she got a flash and then nothing. She jabbed and stabbed and jabbed and wobbled and someone else came over and wobbled and moved and tried, but finally resigned to pulling the needle out. *ouch* They felt bad and the initial lady handed it over to the 2nd lady to try.

My LLMD wanted me to be tested with a new Lyme lab. We're praying for a positive. I know that's crazy, but that's what we want.

Just didn't want to forget this "fun" experience.

Possible Lyme Firsts For Me

I was diagnosed 5 years, 1 month and 4 days ago. I have tried many things including some conventional medicine and very unconventional medicine. I have had a PICC line. I have had many firsts.

Today I sat on my LLMD's loveseat and listened to him talk about the two well known LLMD's he has visited since my last visit with him in February. He talked about the homeopathic treatments and oral antibiotics that I have tried. We talked about how they made me feel. We talked about my symptoms, past and present. We talked about things he really hasn't done that many times and I thought about how often I jump on the train of things he hasn't really tried. I thought about how I really am my LLMD's little guinea pig. We have seen things that have worked (but aren't allowed anymore and that really makes me angry) and things that haven't worked at all.

My immediate plan is to give myself a 3 to 4 day break off of all the homeopathic medicines I have been taking to see if my body will improve. If it does improve, I will start over. I have three vials of homeopathic medicines. I will start with the first vial (targets Lyme). I will start off with 6 drops twice a day and increase everyday until I get to 20 to 25 drops twice a day. Then at this point, I'll start on the second vial that targets Bartonella. I will do the same thing with it and then lastly start the vial that targets Babesia. This could all change once my LLMD speaks with the creator of these vials. He wants to talk with her and find out her opinion on my case.

The past few times we have talked about oral antibiotics and I think my LLMD wants to try this route again seriously. My stomach churns just thinking about it. We think based on my symptoms that I have untreated Babesia. Until recently, Babesia had not even been on our radars. However, he learned a lot more about Babesia during his visits to New York with the other two LLMD's. So with this information comes a possibility of new firsts.

In order to target Babesia, there are several medicines that are used. I have heard about all three possibilities and my stomach turns just to think of it. The one my doctor would probably use (we talked about it at length) is known in the Lyme community as "yellow paint." The medical community calls it Mepron. The other antibiotic would be Zithromax. I have had Zithromax, but I have never endured the yellow paint.

In addition to this, he wants me to consider other lyme antibiotics as well. We're thinking about Ceftin, Rifampin ("orange urine") and then Grape Seed Extract. However, ultimately he wants to consider something I never thought I would hear him say.

IV ROCEPHIN.

I'm processing. I have a couple of phrases that I use almost daily. The first one is, "It is what it is." There is nothing I can do about it. I have Lyme and it is what it is. The second one is, "Go big or go home."

The following words scare me: Mepron, IV Rocephin, Rifampin, Ceftin, Grape See Extract. All of these would be firsts for me.

It is what it is.
Go big or go home.

Of course I have to wait for my LLMD to decide, but ultimately it is my decision. There are benefits to both treatment courses. Both treatment courses are expensive. Both treatment courses have their downfalls. I don't know what I want to do yet, but I do know that I trust my LLMD.

Here is the truth, the gut wrenching truth. I must admit I am scared, but I have learned a thing or two in the past five years. In order to see the beautiful rainbow, you must go through the rain. People always ask how I can stay so positive with everything I have gone through. I try not to let others see my weakness, my negativity. I am not 100% positive 100% of the time, but I do try to bring the joy to others. I say bring it. Bring the joy. Bring the pain. Bring the Lyme and Bring the rain.

Praise you in this storm: Casting Crowns.

Home Hunting

Thirteen years ago, we bought a home. This home has done us well, but when our best friends in the neighborhood moved out of the neighborhood staying didn't seem nearly as important. But because I don't like change, we have stayed. We began our discussion years ago, but recently we've taken our talks up a notch. Last weekend we drove around a few subdivisions and in a spur of a moment decision, we walked into an "Open House."

We opened the front door and as soon as I walked in I felt as if I were home already. This was not something I expected. I expected to not like something structurally with the home, whether it was closet space or room size or where the master bedroom was located or ... something. I looked to the right and saw a space I could use for a Lyme advocacy office, a space located right at the front of the house with easy access to friends who might have wheelchairs.

I looked to the left and saw the formal dining area with wooden floors, a really cool ceiling and bead board that I absolutely love. I walked through to the kitchen and saw the dark cabinets which I adore and the only thing at this point that I could live with, but not in love with were the appliances in stainless steel. I continued my walk when I saw the sun room. It was awesome with french doors. Then to the left a laundry room (an actual ROOM and not just a space in the wall for a washer and dryer). Then the master bedroom, master bath and HUGE closet. I was smiling at the huge tub and at this point I was sold. There was a great great room, a screened porch and then that's just the downstairs. I absolutely loved the upstairs space too.

We are trying our best to get things in order to be able to place an offer on the house. I'm excited for this change, but trying not to get too excited in case we wind up not being able to get the home. We found an option today that would enable us to get the home, but things have to line up just right. We know that if it's God's will, it will happen. So we pray that God's will is lined up with what we think our needs are.

Dependable Jennifer

I always pride myself on doing the right thing. I am dependable. Someone needs me, I am there. No matter how badly I feel. I feel that it is one of my best attributes and my biggest weakness. So on Monday, there was a huge shock wave and I was asked to come to the rescue. I did. I will.

A friend of mine had a baby on Monday. It was a surprise to everyone. So the week where I should have only worked 3 hours, I worked about 14 hours. Next week, where I really just wanted to rest and relax and maybe clean a little house ---- I am scheduled to work over 18 hours. While this may not sound like a lot, it IS a lot for me right now.

Yesterday, I went to hang out with my best friend and very shortly after I arrived I had to leave. I couldn't keep my eyes open and my body was aching in great pain. I slept last night for 11 hours (without Melatonin) and woke up fatigued (after a b12 shot last night) and in pain. I was crushed. I have today, tomorrow and the following day to get it together before I have two very full days. I also have a lot of work to do for college.

Like I said, my best attribute and my biggest weakness. It's hard for me to say no when someone needs me and even worse it's hard for me to ask when I need something in return.

Here we go again (IV's)

My IV lady is so good that she has never missed my veins --- UNTIL TODAY. She stuck in the needle and my vein blew. The pain didn't bother me, but the wave of emotions came over me and I cried. The second try on the right wrist was good, but it did cause pain. I'll probably wind up with bruises in both spots. One is already bruising and the other may or may not.

We'll see how it goes. I got my IV (2 hours and 45 minutes today) and I did 60 minutes of HBOT. I almost peed on myself in the machine because of all the fluids. Yeah, fun stuff.

P.S. I have a fever. :-(

Checking the "ole" Cortisol

Today is a big day for me. We're checking to see if my Cortisol level has improved after being on Cortef the last little while (4 full weeks and a couple of days). I still feel like I'm dragging in the morning and my body hurts. I used to roll out of bed get dressed and be wide awake. Now I drag. Here I am a full hour after I woke initially and my eye lids barely open. It took me 25 minutes to get out of bed after my eyes open. Typically if I wake before my alarm goes off, I roll out of bed immediately. If my alarm goes off before I wake, then I typically snooze one time (which is 8 minutes) and then roll out of bed. So I'm not sure how much good this Cortef has done. We'll see in a week or two. Blood is today and so is an IV.

Proud friend

Not too long after I got married, I began to work in retail. On my very first day, I began a friendship. This friendship grew and her family would come into the store to shop. Her little brother was one of those kids that just oozed with confidence. In fact, it was a step above confidence. It was cockiness. It was annoying yet in a small way endearing. As time passed and I left that job, I continued my friendship with the family. They really are like another family to me. I know if I needed anything at all that they would be there for me as I have tried my best to be there for them. I have been to wedding showers, weddings and funerals. I have seen their job and their sadness. They've seen my joy and my struggles.

In the last ten years, I have watched this kid grew up in more ways than one and not too long ago he fell in love. It was one of those love at first sight moments. As soon as he saw her, he knew she was meant for him. They dated shortly and he proposed. Today, I celebrated with his family as their wedding date comes near. I had such a good time hanging out with my friend, her little brother who has in time become a friend of mine and meeting his beautiful fiance. I'm such a proud friend to watch this "kid" grow into a man.

The Day for Firsts

I had no idea yesterday that when I woke up it would be a day of firsts, but was it indeed. I almost felt like a kid again, minus all the headaches, muscle twitches, joint and muscle pain that accompanies Lyme Disease.

It was the first time I saw a friend from High School at his home.
It was the first time I met his littlest daughter, who is so adorable in every way. Seriously, so cute.

It was the second time I met his wife and oldest daughter. Humor and rule maker describe this little one. Honestly 4 to 6 year olds are my favorite, his kid --- humorous and enabled me to have a few firsts of her own.

First, she wanted to show me her trampoline. Then, she wanted me to jump on it. Now I could have pulled some lame excuse about how I was too old for that kind of thing, but when a six year old girl asks you to do something fun .... well you kind of just hike up your bootstraps and do it anyways. So I crawled up into the trampoline and nearly fell over just standing on the thing, but we began to bounce. With each bounce, I got more tired. My heart rate accelerated, but I kept at it anyways. I realized with each bounce that I had bounced more on a trampoline in that moment that I had in my entire life combined. I'm *not* a get on something bouncy and jump and down kind of person, not even when I was a kid did this thought enthuse me.

Well, she got down for a minute and I fell flat on my face and just laid there. I was exhausted, but when I rolled over and saw the sky. I realized I was having a "first" moment. It was the first time ever I had laid down on a trampoline and saw the sky. Finally, I crawled out of the trampoline and barely made it to the picnic table. Then this same little 6 year old encouraged me to lay down on a hammock to get rested. Now again, I could have easily said no. In fact, I did say no. But, peer pressure by a six year old? You try to get out of it.

So while she steadily held the hammock, I laid down. I felt like I was going to fall out the entire time and I had a watching audience. Not only was the 6 year old watching me intently, my high school friend was just waiting for me to roll off so he could laugh at me hysterically (which would NOT have been a first, said friend laughing AT me). After about 3 minutes of barely hanging out for dear life (oh it's oh so dramatic you know), I rolled out on purpose barely landing on my feet and realized I had another first.

Then, the greatest first of all happened. My friend and I left to go do something. We never know what we'll do. We never really plan. We just go and do. His wife tried to plan us stuff, but we kept saying no to all of that. Yeah like I *really* want another first at Frankie's Fun House! Uh thanks but no thanks! She stayed behind with the kids and we left for mysterious funness.

Since we were close, he said that I had to see this place I had never heard of. Well why not? So we went to this place right here, http://www.southernseason.com/ I kept being asked if I wanted cheese or chocolate. And I kept saying no because if I had one piece I would want two and if I had two pieces Id want four. It would keep growing exponentially. So I kept saying no thanks. Then we went to the Carolina Roses. No joke this Roses was 1/4 of Carolina stuff. It was AWESOME! They had socks and purses and shirts and blankets and dog clothes and everything you could ever think of. I could have wasted good money in there!

One thing you must know is that my friend and I are HUGE Tar Heel fans. We had watched the game together earlier and were amped up on the win. So, where does one go when amped up on a Carolina win? Well .... CAROLINA OF COURSE! Although, it was a another first for me; to be on campus after a win and not have been there for the game or for concession working. So, we left Southern Season and Roses and drove to FRANKLIN STREET!

To top it off, we ate at Top of the Hill. This restaurant kind of hovers over the street and while I am not much of a "new restaurant" go-er because I'm so picky about what I eat, we went in with smiles on our faces. I scourged the menu to find something I could eat and settled on a plain burger with cheddar cheese. Then I got drunk on beer fries. I'm totally KIDDING about the drunk part, but it was indeed the first time I had ever eaten beer fries. Every 2 or 3 minutes, I'd start grinning for no reason. BUT, there was a reason. I was sitting at Top of the Hill Restaurant eating burgers and fries overlooking Franklin Street right at sun down. It was beautiful and fun and I was with one of my friends from High School. Seriously who was this person?

Later I had commented that I had never walked all the way down Franklin street, so guess what we did? We walked all the way down Franklin Street. With only a few moments of I just had to sit, I made it all the way down and back without having to ride piggy back, having my hand grabbed onto and pulled or just being carried. On our way back, we saw a woman that looked like a hooker. Right after we passed her, we saw 3 cops running into a Subway very quickly with another two cops siren their way in later. We thought at first they were going in for her, but they weren't. We didn't want to stick around regardless. We pretty much ran back to the car, minus the actual running part. Though wouldn't it have been funny to see me and a friend running for dear life on Franklin Street? Oh if I had had the energy I might have done it anyways. It would have been a first! Maybe next time. Besides, it was getting pretty dark at this point and it was hard to see the beautiful aspects of the campus (which I *have* seen).

We were walking back to the car when we found out his little one had a fever, so we had to get back so he could help out. And of course since I was at his house with his little one with the fever before she got the fever, I'll probably wind up with a fever too. Well, I don't know it may have been well worth it this great day of firsts with or without Lyme. I don't want to forget it so I thought I'd document. The bad part of my Lyme is that sometimes I forget things. So this blog helps remind me later when I forget * especially since I didn't bring my camera and had no pictures taken of this amazing day -- never fails, I do something fun without my camera.

My friend saves the day with a pic: The view from Top of the Hill.

Happy Birthday Dr. Seuss

Today we celebrate the life and legacy of Theodor Seuss Geisel, otherwise known to the world as Dr. Seuss.

This quote by Dr. Seuss is SO me. I'll be honest. For a while, I wasn't comfortable in my own skin.

My quirkiness bothered me
so I hid my personality.
I hid it deep down so well.
So well in fact, no one could tell.

And then one day I realized this fact
that my shyness was indeed an act
I realized that Dr. Seuss was quite right
when he said it quite loudly on one fateful night.

"Today you are you
That is truer than true
There is no one alive
who is youer than you."

Indeed I have come out of my shell
Dressing like the cat in the hat minus a tail.
I carried a platter filled to the brim
green eggs and ham to show all of them.

I had the best day I've had in a while
and the kids faces were covered in smiles.
It was in this moment I remembered it's true
there is no one alive that's youer than you.

*written by Jennifer inspired by Dr. Seuss*

Five Years

Five years ago today, I was given hope.

Five years ago today, I was given answers.

Five years ago today, I was finally told that someone knew what I had.

Five years ago today, I was told that it would be a long road to recovery.

Five years ago today, I was told that it would take two years for my test to turn positive.

Four years ago today, I still struggled on antibiotics.

A little over three years ago today, I had a picc line.

Three years ago, my test turned positive.

Two years ago, I turned the tide and slipped quietly into remission.

One year ago, I started quietly fighting the Lyme fight again.

And here I stand today, side by side with my LLMD smiling because I know that five years ago he was right. I have Lyme and it's written all over my forehead!

Leap Year

When I was a kid, I think I remember there was a librarian that was born on leap year day. I vaguely remember teasing that she was only 10 years old. This is only the 2nd February 29th I've had since diagnosis.

So I have had good intentions the the 2 1/2 weeks. I have taken my medication and supplements exactly and mostly on time and then today happened. I woke up late, but not late enough to not take my first dose of Cortef. I wiped the sweat from my brow (more on that later) and took the 10 mg of Cortef. Then I began writing an essay for my class. I wrote and wrote and wrote some more. Okay it was more like typing and typing and typing some more and then I realized it was 2pm. Ahhhh I had typed through my 2nd dose and it was closer to my 3rd dose than to the my 2nd one. So I made the decision to just "skip it."

Then I was 1/2 way to my Dad's school when I realized I hadn't packed my 4pm Cortef. I nearly screamed out loud and then I realized, this day wouldn't have existed last year. No biggie. ;)

Back to the sweat. I don't know what's going on, but I'm sweating like crazy. It's ridiculous, seriously ridiculous. It is probably related to the new stuff I'm taking. I'm documenting so we'll see when I go for my follow up in April. Well I just wanted to make sure I had written something on a day that only comes around every four years.

Medicinal Compliance

I'm sure that there must be others that understand the dilemma of medicinal compliance. It is so difficult to make sure that you take this one at 8, 12 and 4 and this one doesn't make my stomach hurt if I take it right before I go to bed. Then there's one that each day I have to add another one drop to my regiment. Example: Today I take the Detox stuff at 8 drops in the morning and 8 drops in the evening and the Borrelia drops 7 drops in the morning and 7 drops in the evening. Tomorrow ... it's 9 and 9 and 8 and 8. And the Cortef is 2 tablets at 8, 1 tablet at 12 and 1/2 tab at 4. It really is a lot to remember. Not to mention if the meds make you feel kind of puny and you herx, you don't wanna take anything at all. But, I have a goal to be 100% compliant for at least one month. I'm 2 weeks in and have done everything just right. How do I do it?

Well, I'm an excel spreadsheet lover.

On the left hand boxes, I type in every single supplement or medicine that I have to take. When necessary, I create the name three times and put next to it 8am, noon, 4pm. At the top of the spreadsheet, I type in the days of the week. So let's say that on Tuesday, I need to take 2 Vitamin B's. So I find the little box that corresponds with Tuesday and Vitamin B and type in 2. That way I always know what I need to take. Anything that I don't have to take that day, I mark it out in a grey color. An example of something I might not take today that I might take tomorrow would be if I were getting a B12 shot, I wouldn't be taking the B12 sublingualy. Another example is that I haven't started the drops for Babesia or Bartonella yet, so they are all in grey.

Underneath I add in anything else that is pertinent. This is if I got an IV or HBOT or something like that and what day. Another thing is if I added something to my regiment that day. For example if I felt a UTI coming on and took Mannose Powder. It's not something I'd normally use, but I would want to keep track that I used it. Last week I felt I was coming down with something so I took extra Vitamin C and a few days of Bio Chlor Dox.

The chart helps me stay compliant and it helps me know exactly what I've taken and what I need to take. I also use this same chart to help me keep track of symptoms. On the 2nd tab, I write down on the left hand side the symptoms I've been experiencing. Headaches, Chills, Sore Throat, Twitching, Difficulty Breathing, Fatigue, etc. I have about 20 symptoms on the list, but add if any new ones come up. At the top, I have the days of the week. I label each symptom daily whether it was 0 (never occurred) to 10 (unbearable). I use different colors for each number so I know at a glance whether I felt little, mild, moderate, severe or unbearable for the symptom. So if I see a "RED" box, I know that whatever symptom that was -- it was unbearable. If my box is teal, I know I had some mild symptoms of whatever is in teal. It sounds complicated, but it really has helped me track my symptoms.

It is easier for me to see --- Oh I had a stuffy nose for 7 days this week, but it was a "mild" symptom. As opposed to having a stuffy nose for 7 days that was unbearable. If I told you that I had lower back pain for 17 out of the last 21 days, you might winch. But if I told you that on average, that back pain was mild and I only had a couple of moderate pain days -- it doesn't sound as bad. One day I may have 15 to 20 symptoms that are mild to moderate and the next I may only have 5 to 7 symptoms but they are more severe. Which is more disturbing? I have yet to decide. What I do know is that to have two days in a row of unbearable fatigue is just that - unbearable - and I will crash.

Week 1: I had 5 symptoms that at least one day rated 6 or more. My worst problems that rated 6 or more were stuffy nose, chills, headache, lower back pain and nausea.

Week 2: I had 6 symptoms that at least one day rated 6 or more. My worst problems that rated 6 or more were ear pulsing, throat bumps, headaches, sore throat, jaw pain and fatigue.

To compare the two weeks: There were about the same number of problems although they were slightly different. Week 1 I had not started the detox drops. I also had not started the Cortef yet. Week 2, I had begun both Diflucan and the Detox drops. We attribute ALL of the symptoms to the Diflucan and yeast die off.

Week 3: I had 10 symptoms that at least one day rated 6 or more. My worst problems that rated 6 or more were itching, chills, headache, fatigue, sore throat, left knee pain, numbness, twitching, leg pain and difficulty breathing.

To compare the third week to the 1st two weeks: I had a lot more symptoms this third week that on at least one day rated 6 or higher. Most of those 6 or higher numbers were 6 to 8 in ranking. Fatigue kicked my butt two days in a row by ranking 9 and 10. During this third week, I started the borrelia drops AND the cortef. I was continuing the detox drops and the diflucan. It's hard to say which symptoms are correlated to which medicines, but if I had to guess ---

Itching, Headache, Sore Throat are Diflucan related
And the rest minus the fatigue are Detox and Borrelia drop related.
Fatigue is probably Cortef related.

Just my guess. Also on my chart I leave notes about sleep. I need to know how many interuptions I have during the night, how long was my sleep and how I felt when I woke up. Did I feel rested, tired, fatigued? Did I wake up only once or was it 5 or 10 times? Did I sleep less than 5 h ours or did I sleep for 10 plus hours? Last night for example: I was so fatigued that I collapsed in bed at 8pm (this was after taking a two hour nap on the couch between 2 and 4 unexpectedly).

I didn't wake up again until 4am, but I fell back to sleep and woke up again at 7:45 (and got out of the bed because I woke up feeling very rested). So I almost got 12 hours of sleep, with only one interruption and woke up feeling rested. Considering that yesterday's fatigue level was at a 10, I needed that essentially uninterrupted 12 hours of sleep. Yet a few nights ago, I couldn't fall asleep easily. My sleep interruptions were more than 8 and I only had about 4 hours total of sleep. How do you think I felt the next day? Terrible.

Well I've babbled on enough about my wonderful excel spreadsheet. It really is a wonderful tool to use for medicine compliance, symptom chart and sleep patterns.

Itchy Itchy Scratchy Scratchy

The yeast must be dying because I'm itching terribly. It's not as bad as when I had the PICC line, but it is pretty annoying. My arms (my left one more than the right) and my side and my legs and my shoulder are bothering me today. This has been going on since I started taking Diflucan. I knew I had Candida, but I didn't realize how bad.

I feel a little better emotionally today. I don't know why it took so long for me to get out of the funk, but the funk seemed to have lifted when I woke this morning which is a blessing. I don't like being in a funk.

The New Treatment

It's going alright, which is better than terrible.

I'm having a really difficult time remembering to take it on time. I have to take it about 8, 12 and 4. Typically right before the time I have to take Cortef I think I better go take Cortef and then, I forget and remember 30 minutes later. Better 30 minutes late, than never I guess. Today is day 4 and I have taken all 12 doses. This is particularly good for me. I hate to admit that medicine compliance has never been a strong suit of mine. Typically when something makes me feel bad, I won't take it. So to feel a wave of nausea come over me, I hesitate to continue, but my goal is to be better this go around.

With the new herbal Lyme treatment, I'm on day 13 of the detox stuff and day 4 of the Bb1 bottle. I'm at 4 drops in the morning and 4 drops in the evening. Nothing terrible has happened yet so I keep on rising the drops. On Sunday, I will add in the "Bar" bottle (for Bartonella). So far so good. I've not had any particularly weird things happen yet other than the mouth blisters, but those happened after I started Diflucan and Detox bottle and not the new Cortef or the Bb1 bottle.

Yesterday, I had a really bad twitch of my hand. Now normally the twitches don't really bother me and I'm not doing anything that can cause any real damage, but yesterday tells a different story. I was unloading the dishwasher. We bought a new blender and the blades are sharp. I was being really careful because the blade was being washed. Well as I passed over the blade carefully, my hand twitched. I cut my thumb on the very sharp blade.

It didn't bleed at first, but I went to the bathroom so I could wash it and get a band-aid. As I got to the bathroom sink, it began to bleed and bleed and bleed. It took 30 minutes of direct pressure for the bleeding to stop. It stopped just in time because I almost got in the car to drive to the Fast Med Urgent Care. The cut seems to be healing nicely. I'm keeping it covered, but will uncover it tomorrow in the HBOT to stimulate more healing.

All in all, I'm doing okay even though I feel weak and have been having some headaches.

Response to comment

Hey there Christina! ;) I don't mind posting how I felt about the Borrelia Series. So the Borrelia series caused me a lot of herx reaction. If you're doing the Borrelia series in the little vials. The small box with 10 vials in it. I took all 10 and then started to go backwards with the second box, but it was just a little too "much" for my body at the time. So we switched to something else. Which honestly I can't remember the name of .. Tick Nosode or something like that. I was working on that, but this last visit we switched to something different. I've heard from a lot of people that they herx on Borrelia Series which obviously we're supposed to do --- but I couldn't tolerate it so we went in a different direction. If I had been at home instead of working full time, I would have probably continued it. I'm not sure how this new stuff will work because honestly I've only been on the 2nd bottle of stuff for a couple of days. I've been on the detox stuff for a week. We'll see. Plus throw in the new stuff for Cortisol and I don't really know what's doing what if that makes sense.

I was having trouble with my email, but didn't want your comment to go unnoticed. Hope this helps. :)

Traffic Source

Every now and again I go look at traffic source just to see and I got found by someone looking up, "north Carolina basketball player white boy number 42." Haa haa!

We've had three players wearing number 42 who have their jerseys in the rafters. I could name 2 of them without looking. Sean May from the 2005 national championship team and Jerry Stackhouse - First Team all American played in the 90's. Then there was Daughtery, Brad Daughtery.

42 is a pretty awesome number. I'm sure we've had more players using the number 42, but none are using it this season.

Sad little labs

I was so hopeful that my labs would look good, but I knew based on symptoms that something had to be off in my blood. We looked at several things, but mainly things that I've had borderline trouble or things that I have had trouble in the past that haven't been tested recently.

What did we test? Well we looked at the standard CBC. This test looks at everything from White Blood Cells to Platelet Counts. In the last five years, they have varied. However, they've always been within normal limits with the exception of Hemoglobin, Hematocrit and Platelets were off a couple of labs in 2010. There was no exception in these labs from February 8th. My CDC looked good. So I was very happy with them. They actually did CBC from two different labs. They looked very similar and were right in the perfect range for *most* of the things they looked at.

Then they tested my Comprehensive Metabolic Panel. These two tests are the most common blood tests out there. Mine were pretty unremarkable and have been but there are a couple of them that border on low. One is my sodium. Now what you may not realize is that Sodium is important. When it's on the lower end of normal, it concerns my doctor. It is a little indictor for him that things aren't quite where they should be health wise. My liver enzymes gave me a little "eye brow" raise as they were a little higher than they have been, but unless he specifically mentions them I won't worry. I bet they'll go down the next blood work.

My Vitamin D was perfect. I couldn't be happier regarding the Vitamin D numbers.

Then there are the CD tests. Now I will never really understand the CD numbers, but they are some that quite a few lyme doctors take stock in. Now remember how I was taking all that LDN -- or was trying to take the LDN ... it was for this number CD56. You won't believe this -- in fact, I am struggling to believe it, but it is within normal range and I'm not on that medicine for it. Not only is it in normal range, but it's in a really good portion of the normal range. I was shocked.

Well now for the sad part of these little labs. I have always bordered on the low end of Cortisol. He tests for it every now and again and typically he gives me some kind of natural support to help. Well yesterday I received a phone call from my LLMD's office. My labs were back and that some of the labs were low so he wrote a prescription for something to take care of it. Well my cortisol is so low that he felt it necessary to write a prescription. In addition, my CD57 is in the toilet. This is one that "they" say is the marker of how well your body is actually doing. The lowest normal number is 60. Mine was 19.

So I start a new medicine tomorrow. I'm VERY nervous about it. I have to be on it for four weeks and then get retested to see how the medicine helps my cortisol. I'm worried about what the results will mean in the end. I'm not *really* worried as I know it will all work out, but nerves are there.

Little Tiny Car, you did good

So first, my husband is fine. He's walking, talking, laughing, joking and overall just fine.

He was in a car accident this morning. This huge yellow rental truck (you know the BIG trucks) side swiped the back panel of his car causing his little tiny car to do a 360 into the guard rail 4 times. The car is totaled. The airbags went off. But it's the little tiny car that could. It kept him safe and sound. He's got a couple of air bag burns on his face and his nose is a bit swollen, but he is safe and sound at home.

Little Tiny Car, you did good.

HBOT

I have to admit that I really enjoy the HBOT treatments. The first few times it made me nervous, but after I got comfortable with the size of the machine and started watching movies in there instead of listening to music I really began to enjoy my time in the machine.

On my 4th treatment though, what I like to call the "Jennifer Jinx" happened. I got in and about 10 minutes in the oxygen wasn't coming out of the nasal cannula. They couldn't figure out what had happened and the guru wasn't there so they got me out of there and I came back the next week when it was fixed.

Off and on something would happen. Typically whatever the "Jennifer Jinx" was happened at the beginning of the dive (IE the oxygen wasn't coming out) and then a couple of times ago, in the middle of the treatment all the sudden the machine turned off. Well apparently when the maintenance people were changing a light bulb in the lobby, a breaker flipped causing the circuits that were powering the HBOT to shut off. So I got out of the machine while we waited for them to fix that and got to finish my treatment.

Last time I went in and there were no complications.

Then there was today. The Jennifer Jinx was in full force. I got into the machine and laid down. I plugged in my ear plugs, put on my oxygen mask and got ready to relax. The machine was turned on, the oxygen came out streaming and I was good to go. Gave the thumbs up and she left me to enjoy my 90 minutes in peace. Well about 5 minutes into it I began to have a really weird feeling that something wasn't right. The Oxygen was flowing, but something didn't feel right. So I looked around and realized that the machine wasn't inflated all the way. I made a quick phone call to the front office (because I knew I'd be able to explain better on the phone than through the machine window).

She came to check it out. Sure enough, something wasn't right. So I had to wait there while they fixed it. It was something about they changed out a part and there were now two switches to flip instead of just one. The person that put me in didn't realize it so they only flipped one switch. Or something like that. Anyways, they restarted the machine. I got my time in the machine. But still there is something about the Jennifer Jinx. It's almost to the point where I wanna say, "What's going to happen this time?" Good thing I'm not HBOT claustrophobic. For the record, I was safe and had oxygen the entire time.

OH, my blood tests came back. Or at least part of them. I couldn't see them though because my LLMD hasn't signed off on them yet, but --- they told me that it was all normal. and the tests that came back ... included vitamin d. It's been FOREVER since Vitamin D has been normal. I mean I can't remember the last time it wasn't severely deficient. They said it looked great, but of course I didn't see it myself. No telling what the other labs will look like. Hopefully I'll be able to pick them up next week when I go in for my HBOT.

Weird Symptoms and Pretty Awesome

So the funny thing is that I have symptoms that to a "normal" person would sound weird, but to me there almost always there so they are no longer weird or unusual. I think , "Oh that's back. Hmmm." Then I go on about my day. Then there are symptoms that even I go, "okay that's weird."

I'd show you a picture except it's really impossible to get great pictures of "rashes" or "bumps." Co-incidentally about 10 minutes after taking my first new supplement that's supposed to Detox -- but really .. 10 minutes, I highly doubt they are related -- anywhoo -- what was I saying? Oh yeah, I got into bed and realized that my back was itching.

I've learned that when I itch that it is better to kind of "rub" the itches rather than to "scratch" the itches because when I scratch it leaves red welts on my skin which makes skin irritations look worse than they are so that when I finally look at whatever is itching that I'm surprised by the red raised mess that's there.

Where was I? Oh yeah, so I get into bed and realize my back is itching. I rub my right shoulder to ease the itching and feel tiny bumps. I rub my left shoulder and feel bumps. I ask my husband to get up and check my back and surely enough there is a rash on my back. I thought that was weird. The next morning the rash itself looked to be gone, but it was still a little bumpy by feel. I can't really feel it today.

So today I woke and my throat was hurting. This isn't all entirely unusual for me. Sometimes I wake up and it hurts for about 5 minutes and I'm good to go. I continue about my day and while we're out eating I get this kind of "clogged throat" feeling. It is a feeling I used to get all the time and I can't describe it anymore than I feel like my throat is closing up, but it's actually not swelling at all.

I think that maybe a little piece of food was stuck on the roof of my mouth so I start messing around up there with my tongue and feel a little bump. I get in the vehicle later and look and there are a bunch of little bumps towards the back of my throat including one little white one. *great*

So it's one of a few things that I think is going on.

A: I have some kind of virus that just has to pass.
B: I'm detoxing some kind of awful producing these toxins to release into my skin (and mouth).
C: The Yeast Overgrowth on the inside of my body has come out to play on the outside of my body.
D: A combination of any of the above.

For the record, I haven't had a fever. I don't think it's strep. Also, it's what I get for going out in public with a whole bunch of people yesterday! Should have known, but I had fun! Who can blame a girl for wanting to have fun?



Pretty awesome day even through all the weird symptoms.

Guard Show

So Saturday was the annual guard show near my home. I love this show even though it is one of the first shows to perform so the guard shows aren't ready completely. I know that most of my guard instructor friends will be at this show and I typically run into a few people I know. However, I had decided I was not going. First I had plans out of town and second I wasn't feeling my best.

I'll leave out the details of why I wasn't feeling well, but I wound up not feeling well enough to drive 3 hours to my friend's house. So I stuck close to home. While I was pursuing the "interwebs" (as my husband calls it), I came across the guard show and struck up a conversation with a friend I marched with 16 years ago. She was going to the show with her daughter. About 45 minutes before it started, I started feeling a little better. So I decided since it was close (15 minutes or less) that I would go ahead and go.

It was pretty cool that we haven't seen each other in about 16 years and we picked right up where we left off. Great friends are like that. I loved most of the guard's concepts even if some of them took me a little bit to "catch on" to the theme. I was in guard for a while with one lady that teachers several guards. So I always say hey to her when I go to shows. Not to mention, her family was so kind to us when we moved. I know this family needs prayers right now so if you could please lift them up that would be great. Then my best friend's sister works with another guard so I got to see both of his sisters and nephew. That's always fun.

OH and I got to meet another Lymie at the show! I was sitting in my spot (Yeah I'm like Sheldon in that way) and a guard came out and I said, "HEY that looks like Carey." So I strained my pretty little eyes and was about 99 % positive I was right so after the shows were over, I went over and said, "You recognize my face?" Seriously? That's the best I can do? I gotta come up with something better when I recognize someone I know online. So if you guys have any ideas since I tend to run into people pretty often, let me know. Seriously, my line was dumber than dumb. Of course, I was having an extreme Lyme moment so forming sentences was quite difficult. To Carey's credit, Carey knew exactly who I was.

The one about Whitney Houston

I'm sure there will be a lot of blog posts about Whitney Houston. What an amazing singer and entertainer, but I want to focus on something else. I'll probably get a little "heat" for this post, but I'm gonna speak my mind and hope you all understand where I'm coming from today.

So you know how there are moments in your life where you say, "I'll always know where I was when ..." So I was sitting watching guard and this lady turned to me and said, "Whitney Houston Died." Her eyes were huge. My brilliant response? "Seriously?" (I had a total Grey's Anatomy moment). She said, "I wouldn't joke about something like that." My response, "She can't be that old. Do they know how she died?" As the lady is responding, my husband sends me a message and confirms her death.

Now I have to say there are fewer things that bother me more than when a celebrity dies. It's not that they died. It is that the media feels the need to talk about it over and over again and show pictures of grieving family members, friends and fans. Many people die in this country every day, every hour, every minute. I have family members that have lost best friends and I have friends that are losing or have lost parents. I have friends that have lost best friends. There are military dying every day. KIDS dying that shouldn't have even been with their parent to begin with if Social Services had done their job! (that's another post entirely!)

But I feel that media should just let grieving families and friends be. I understand that it is urgent that news needs to get out regarding these events, but must they repeat the same thing over and over again for weeks?

I don't know. It's just something that gets to me. I haven't even turned on the television since I received word because I don't want to see Whitney's 18 year old daughter grieving. (I googled her just to make sure I got her age correct and of course now they are reporting that she's at the hospital for stress -- no kidding, you guys probably helped put her there). Yes I am my soap box. And yes Iknow, they are celebrities .. they put themselves out there. BUT, there is a time and a place for privacy. I wish the media would respect their privacy.

I hope I didn't make anyone angry, but I just had to get it off my chest!

PS. Stay tuned the next two days, I have two posts schedule. One about my guard day yesterday and one about my weird symptoms.

My past week

My week was *curayzee* (crazy). Saturday evening I took my first dose of the detox supplement. I'm supposed to be on this detox supplement for a week before starting the bottle that targets Borrelia. So I opened up the bottle, pulled out the capsule and thought ... there is no way this is doable, but I'll try it. So I pulled out a small container of applesauce and began to pry open the capsule.

Now LDN capsules are hard to open, but this one ... I almost pulled out my husband's pocket knife to cut the sucker in 1/2. So I sprinkle that bad boy (well probably 1/4 of it because that sucker was huge!) in the applesauce and attempt to swallow. Let the gag reflex begin. Ugh. It was terrible. It took 20 minutes to take this ONE capsule. Twenty minutes later I was feeling really nauseated. I stayed nauseated the whole night. The next morning I got up and opened up the bottle. Just the smell knocked me over so I emailed my guru and said, "Look this ain't happening pal, give me the GL version." Okay I didn't say it that way, but bottom line was my guru ordered one in a dropper form so that I could do "one drop" at a time. I picked that up yesterday and started my first dose last night. We'll see. I did the 3 drops and wasn't gagging. WEIRD thing was that I got a rash on my back. I don't know if it's related or not. Probably not, but just a major coincidence.

So the rest of the week. I'm exhausted just thinking about it!

I had my class on Tuesday. I have no idea how I'm doing in that class because we're more than 5 weeks in and we have only received one grade. Hopefully that one grade is indicative of how I'm doing in the rest of the assignments. Turned in the assignment early since I knew I wouldn't be feeling up to it on the rest of the week.

I had my treatments on Wednesday. My LLMD wanted me to get some blood work and I was scheduled for an IV. So, they are kind of enough to always try to get the blood from the IV insertion site so it doesn't take multiple sticks. They look and finally go back to the one in my left hand. This little vein isn't going to hold up much longer. I'd say I don't' know what I'd have to do if I got the IVs more than once a month, but I do know what would happen. I would get another line.

So she inserts it and tries to get blood out. One tube came out "ok," but the second tube started hemolyzing. So they made a rash decision to use the first tube for my "fasting" blood work and go ahead and start my IV. I went back to my chair and warmed up my right arm. I was hoping they would find something and I wouldn't have to come back next week for another try. After warming up for about 20 minutes, she came over and got me. They drew no less than 12 vials. I really don't know how many were up there ... but it seemed like quite a lot. They drew "extra" just in case one vial hemolyzed and they also had to draw two tubes extra to throw away since I was getting an IV during the blood draw. I went in yesterday and they said my blood work was fine -- should get back next week one day. I finished up my IV and on a whim asked if I could get 60 minutes in the HBOT. They approved it and I enjoyed my rest in the chamber. By the time I left the chamber, I had energy. More energy than I've had in a month! Not sure if there was something regarding mixing the IV and the HBOT right after, but I'm telling you ... I felt wonderful!

On Thursday, I had planned an "easy & restful" day. I got my hair done. That was my plan, but ... we also needed to take our "puppy" (aka over 10 years old) to the vet to get rabies vaccination. I asked for Saturday, but they were booked the next two. This was kind of urgent so they squeezed us in on Thursday afternoon so we could just get the one shot. And by us, I mean Dexter & me. Husband was dutifully working. :) We'll take him back in a few weeks to get the rest of the stuff he needs. Then after bringing back the dog, I went to eat dinner with my best friend. Now I'm telling you --- I do not know where I would be if it weren't for this person. I remember a time before he was in my life, but life became significantly better once we were friends.

Friendship is like wine (or so I've been told ... never drank the stuff personally -- tried to once .. spat it out ... yuck) -- it only gets better with age. The best friend isn't the one you go out and do things with all the time. A best friend isn't the one you have the most in common with ... A best friend is the person that you can sit in the car and talk for hours without realizing hours have passed. *oops* I have always said that you should never take your best friend for granted. You just never know what could happen. My Mom recently lost hers. I know it's tough. I thank God every day for sending me mine.

That brings us to yesterday. Yesterday was the day the assignment was due. Can you see how I never would have finished it if I had waited? Don't wait for tomorrow when you can do it today --- Oh don't get me wrong, I'm the queen of procrastination (ask that of the laundry that has been sitting waiting for me for weeks), but that's not the important stuff. Yesterday I called up to the LLMD to find out of my new formula for the supplement had arrived. It had. So I went and picked it up. None of the blood work was back, but I hadn't expected it to be. Our lab called the big lab to make sure my blood was good for testing. It was.

Does anyone remember the day the lightning struck our house? Anyone that knows me knows that I don't spend a whole lot of time in the kitchen, but one day this week I got a hankering for a "shake." So I decided to throw a whole bunch of ingredients together into the blender and blend. I pre-froze yogurt into cubes so I wouldn't have to "just use ice." This took 3 or 4 hours you see. SO by the time I got to the blender part, I was really kind of excited to taste this concoction. I threw in blueberries, a little bit of water, a little bit of vanilla flavored powder and the frozen cubes into the blender. Can you see where this is going? I pressed power. *nothing* The blender stared at me in stunned silence. I thought maybe it wasn't plugged in. So I unplug everything and find the blender cord and plug it in. I press power. *nothing* The blender just stared at me taunting me with my ingredients sitting in it. So, I look at the switch and wonder if something is wrong with it. I reset the switch and try again. *nothing* I move the blender to another switch. Can you say desperate? The blender looks at me and laughs. I scratch my head and say bump it. I pull out a hand mixer ... AN ELECTRICAL HAND MIXER YA'LL and I blend ... and I blend and I blend ... I was desperate for this shake and I wasn't about to go to Wendy's!

So last night, my husband and I go to get a new one, a new blender. Why get a 30 dollar blender when you can get a 130 dollar one?



I'll be blending like a Ninja baby! Okay maybe not, but it works .. and is very sharp. Don't touch it. I won't tell you how I know (ok if you insist ... amazon reviewers). *no injuries of the wife or the husband occurred while making a smoothie, but that smoothie did not taste good .. didn't have any bananas and bananas make a smoothie.

Overachiever does it again

... and again. I now have 6 perfect scores out of 6. Way to go me!

My other professor called me an overachiever yesterday. I turned in an assignment that wasn't due until Friday on Tuesday. I had to because I wasn't sure after my treatments today if I would be in the right mind to be able to complete the assignment. So I finished it early and took it to her early. I told her I had a lot of stuff going on this week and wasn't sure if I'd complete it and get it to her on time if I didn't get it in early.

Carolina Duke game is on. If you live in North Carolina, you know what kind of game that is! BIG ONE! Back to the game!

Follow up appointment 2/4/12

I had an interesting appointment. We had a new form to fill out. That's always interesting because it takes me a lot longer than normal to figure out exactly what the form wants. However, that wasn't the interesting part. The interesting part was that it really alarmed us. I answered honestly the questions to my symptoms. There was a list of different areas and it had me circle between 0 and 4 (0 being never, 1 being occasionally not severe, 2 being occasionally severe, 3 being often not severe 4 being often and severe -- something like that). What stood out to us was the area surrounding joints and muscles. It was very high in numbers.

In any case, we discussed his last ILADS training. We discussed it last night I was there, but I was so cognitively out of it and was so fatigued I didn't remember and important part he said. He said the most interesting (and shocking) thing he learned was that they tested the lymph nodes of "Well" Lyme patients and their Lymph nodes still had the bacteria in them. So even though they had no symptoms, they still had the bacteria. *crazy*

Then we talked (and by we I mean he) talked about different protocols. We (again ... HE) talked about Antibiotics. He talked about Cowden. He talked about Buhner's. Then he started putting it all together. He said that Cowden was really a promising treatment, but that it was practically impossible in regards to how many pills there were in the day. A doctor and naturpath have gotten together to combine different aspects of (lyme fog moment here --- can't remember the name of the kinds of treatments) herbal remedies compacted into an easier formula.

So here we go again. I am going to be a guinea. Maybe I should rename the blog to "Living the Guinea's Life." I always feel that I'm on the cutting edge of treatments. I feel it's worked out pretty well for me in the past (especially that one "unmentionable" treatment that I did that I feel got me into remission for well over a year and ... believe you me, if I could get that "unmentionable" treatment again ... I WOULD!).

I am always a little reluctant to talk about my specific treatment protocols. So, I will tell you this much. I was given a bottle of capsules and 3 bottles of herbal drops. Each bottle is supposed to target a different thing. The capsules are supposed to help with detox and is supposed to help my body get ready for the 2nd bottle. I will continue with the capsules all the way through each of the other bottles. The 2nd bottle targets Borrelia. So with the 2nd bottle, I will start off with one drop twice a day. Each day I will go up one drop each dose. So by the 7th day, I will be on 7 drops in the morning and 7 drops at night. Then I will start the 3rd bottle. This one targets Bartonella. I will start it just like the Borrelia. I will continue going up on both bottles until I get to 14 x 2 and 7 x 2. Then I will start the 4th bottle. You may have guessed by now that the 4th bottle targets Babesia. The "most" drops I can do is 25 x 2 for each bottle. However knowing my body, I won't be able to handle that much.

Once I herx and it's uncomfortable, I begin backing off on bottle 2 ... if after a few days of backing off, I'm still herxing -- I will back off on the bottle 3 ... and then with bottle 4, but theory is that the one I'm on the most of will cause me to herx. So theoretically I should be able to cut back on only one bottle and my herxing should stop.

I have a follow up in about 2 months. I have blood work and IV this week. So pray for my nurse to be able to get my blood and IV.

I won't share publicly specifics regarding exactly what this is until later (maybe never --), but will keep you up to date on how I'm doing.