Wednesday, April 25, 2012

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. 


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. 

Monday, April 23, 2012

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. 

Saturday, April 21, 2012

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.


Thursday, April 19, 2012

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

Wednesday, April 18, 2012

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.

Sunday, April 15, 2012

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.

Wednesday, April 11, 2012

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.

Monday, April 9, 2012

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.

Thursday, April 5, 2012

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.


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.