Monday, October 31, 2011

Love-A-Fair Patrons

So a few weeks ago, we went to the North Carolina State Fair. I so enjoy going to the fair to eat food and to take photos. I hate the crowds, I hate the far away parking, the crowds and all the walking and did I mention the crowds.

Now this may sound horrible, but one thing I love to do at the fair is watch people. This is North Carolina folks. We are some funny creatures. I got to the fair and there was something right away that I went, "If I see that again, I will have to take a photograph." My camera was in the backpack and not ready for picture taking. I thanked my lucky stars when walking, I saw the family again. Even more so when I realized the person was posing for me. I laughed a thousand laughs at this: Look a Squirrel.



Get this kid a contract. Quick!



Dude with a brush in his back pocket. Seriously?



And last, but not least: Leopard Love ...



And that my fair weathered friends is what we see at the NC State Fair.

Wednesday, October 26, 2011

Busy Busy Busy

I've been really busy lately. I've had several HBOTS, gone to the fair, worked hard and gone to a college friend's wedding. He eloped. Sort of. He & his now wife were going to get married on Saturday. Then, they had to postpone it for some legal and medical reasons. Then those things fixed themselves so they decided on a Thursday to go ahead and get married on the Saturday. I was called and I drove there after my HBOT treatment. It was fun . I got to meet his newly loved lady (it was love at first sight for them), her child and his children. I got to hang out with them all over the ceremony. See his folks for the first time since college graduation in 99. So that was fun.

The Fair. Well I have pictures to post, but haven't gotten around to all of them yet. They'll show up eventually.

HBOTs are going well. I actually really enjoy getting in there. It's odd. I thought I'd hate it. I thought I'd dread it. BUT, I actually like getting in there now. It's 60 to 90 minutes where I have some peace and quiet. I get to listen to my favorite music and just be alone and breathe well. It's nice.

I thought about going to the UNC exhibition game this Friday, but I think I've decided against it seeing as how badly I felt after the Late Night with Roy practice.

Anyways, just thought you needed an update since it's been a while.

Saturday, October 15, 2011

Adventures at UNC!

Love me some UNC Basketball. Ya'll know that. It was that time of year again and I haven't been feeling well. However, last week when I found out that my best friend would be off on Friday I informed him that he was taking me to the Late Night with Roy. Sometimes I go with my husband and sometimes I go with my best friend. ~Fun all around with both~

Bottom Line: We get to see the first practice with the boys. It's fun. See? Tip off is about to happen here. BUT, wait, what is that?



You remember when I told you my camera has a special setting? Look closely. Can you see it? You need help? Okay. Here's a closer view.



Wait, you still can't see?


*sigh* The Eric Montross Setting.

Back to the basketball.

The team looks good. really good. I can't wait for the season to really begin!

The fun detour. So on the way back to the car, we took a detour. We thought it would be faster. Uh, no it wasn't, but it was fun. We climbed up this huge hill. It winded me. I couldn't do it on my own. My best friend pretty much pulled me up the hill by my hand. We laughed. A lot. We rolled our eyes. A lot. Especially at the people around us. Seriously were we that stupid when we were in college? I like to think we weren't.

Thursday, October 13, 2011

Just My Luck

Sometimes I have the worst luck ... today was a case of "Seriously can't believe that happened to Jennifer." So I got to the LLMD. I got into the chamber. I put on the nasal cannula and settled down. They started the chamber. I hear it and see it rising. I'm getting comfortable when all the sudden I realized that the nasal cannula didn't feel right. So I weigh the pros and cons of pushing the button.

You see that button right there? It's a doorbell. All I have to do is press it and they come running. Literally. Yesterday I accidentally pressed it. I didn't even realize I pressed it, but I saw one of the employees at the window and she was saying, "Are you okay?" because I was in the chamber jamming! She probably saw something like this when she walked in.



So yeah I was debating ... do I press it and have the troupes a running into the room? I debated for a few minutes and then I pulled out the nasal cannula and put my fingers over the holes. Hmmmm absolutely felt nothing. No Air, No Pressure, No Nothing. I contemplate some more and then pull out my handy dandy cell phone. I make a phone call. I press 107 to "schedule an appointment." And the phone call went something like this,

"Hey there. It's Jennifer. You know, in the chamber Jennifer. I'm okay in here, but the nasal cannula isn't given me oxygen." Nothing like that to get them running! She was in there almost faster than I could hang up. She presses whatever she has to press to get the chamber to stop running. The chamber starts decompressing. Then, I felt the Oxygen shooting up my nose. I put to it and tell her it's working.

So, she starts the machine again. No sooner had the machine started and the Oxygen stopped. We decided that she would just stop the machine and get me out of there so I didn't suffocate (her words, not mine!) in the chamber. The words "suffocate" might freak out the standard patient, me I was in there jamming while the chamber decompressed. Of course the whole time it was decompressing the oxygen was working just fine. So no chance of suffocating today. I got out and was home faster than you can say Jiminy Cricket.

Meanwhile, I love you all!



I was just grateful that I had three other normal experiences because I wouldn't have known something was wrong if it had been my first visit.


All these photos were taken on Tuesday.

Tuesday, October 11, 2011

Head, Shoulders, Knees and Toes

My Head still hurts, like serious pain. The other thing is that my lip has some weird bumps on it. Don't know if it's bacterial, viral, fungal or what .... but it's weird. What else is new? Weird, Rash, Jennifer ...

Shoulders. My left shoulder hurts so badly that it feels like it was pulled out of socket. I'm sure it wasn't, but still .. ouch.

Knees, they are popping - which means they hurt.

Toes: My toes don't hurt! Yeah!

HBOT. I had my 2nd treatment today. Lasted 90 minutes. I rocked out the whole time ... see.

Sunday, October 9, 2011

Hello New Friends

I'm not sure who you all are, but my "stats" usually stay somewhere between 10 and 50 page views a day. On October 6th, I had more than 1300 page views. On October 7th, I had more than 1500 page views. I'm not sure where you are all coming from, but welcome. I thought I'd reintroduce myself.

I started this journal in September of 2008. I began my treatment March 1, 2007. I wish I had begun my blog earlier. The name of my blog would have likely been Living a Symptom filled with no actual diagnosis Life. What a mouth full. In any case, my name is Jennifer and this is my blog. I actively began fighting the world of Lyme & Co-infections March of 2007. Actually my fight began well before then. It honestly began in 1995. You can read more about the background on the post called "Jennifer's Background." I also wrote a little more of my background story on the post called, "Waiting."

Since my Lyme diagnosis in 2007, I've been diagnosed with mineral deficiency, progesterone defiency, heavy metal toxicity, anemia and other health issues. After a little over a full year of IV insertions, I had a PICC line inserted into my right arm in July of 2008. I wrote about the insertion shortly after I began the blog called "PICC part 2." I battled with it every day until February 2009. Of course it led to a very humorous visit at the hospital .... It probably should have been pulled on many occasions though I had wonderful nurses, doctors, insertion team and my husband to help me keep it as long as I needed it. I used it right up until the night before it was finally pulled.

My PICC wasn't used for antibiotic therapies. That is what many people believe, but it simply isn't true in my case. I mainly used it for intravenous vitamins, minerals and other supplemental therapies. We used it for Chelation Challenge and Therapy which is how we diagnosed and treated my heavy metal diagnosis. My PICC was also used with an extremely experimental and controversial IV protocol for about 9 months that is no longer available. I rarely talk about it because it was so controversial. I'm very angry about that because I feel like that IV did more for me in 9 months than anything else I tried. I truly feel that it was one of the things that got me into remission.

For a while, I was in remission. Recently I have found myself having old symptoms pop up so we're back on the treatment train. However I feel that I have one of the best Lyme doctors and we will get me back in remission. I only wish we had that treatment available for me that I used before. I'm currently "treating" with HBOT, Borrelia Series and IV Vitamin C (plus other minerals).

My husband and I got married on Tax Day in 2000. He's my rock. Until recently when my brain actually started working, he went with me to almost every single doctor's appointment.
He supports me with his quirky sense of humor and he had selfless determination to get to the root of my problem. He was the one that found my Lyme doctor and he was the one that helped me fill out all the paper work to get in to see him. He spent countless hours on google researching my different symptoms and putting all the pieces of the puzzle together to get to Lyme.

We have two dogs that we rescued a long time ago. We have an adorable lab mix that is somewhat rambunctious (that's an understatement) that we adopted from the SPCA when he was bout 8 months old. Then we also rescued a Dachshund from a home that didn't want her anymore. I went over to this house with a friend of mine to donate clothes for the mother. When we arrived, there was a terrible stench that greeted us. The house was full of children and pets. I mentioned how many pets they had and the lady said they were trying to get rid of one of them. I found this lovely scared overweight Dachshund under the couch. I told the lady I would take her to the SPCA and find her a home. I fell in love and she's been under our loving care ever since. She's definately no longer shy, but does get scared at new people. She's no longer overweight either!

I work in a child care school. I consider myself one of the most flexible teachers at the school. I can work in any of the classrooms and excel. My preferences are the preschool rooms. I absolutely love the 3 and 4 year olds. They are just too funny. Also I work a lot up front at the desk. I love to give tours of our school for prospective parents, solve problems that teachers/parents have and answer the phones.

In addition to all of this, I love taking photographs, going to Carolina Basketball games and listening to WCU's Pride of the Mountain Marching Band.

Friday, October 7, 2011

I'm a herxing

Yesterday was a great day. I woke up clear headed and without headache. I was thrilled as you can imagine, but then today happened. Last night I took Borrelia Vial #2.

So, I woke this morning in quite a bit of pain. The problem was that I felt as if I had about 100 pounds of weight on my arms. They were heavy. My back was aching. I took Tylenol and went on to work. As time went on, the pain got worse. By 9am, my pain was at a 7. By 11am, my pain was at a 9.5. My head hurt so bad I was seeing black spots, nauseated and I was close to passing out. Tears were streaming down my face. I was miserable. I came really close to having them call the ambulance for me. I was in pain. I pushed through the pain and kept on working. I worked with some amazing ladies that basically just let me be and they worked their butts off for me. My pain currently is around a 6.

This tells me two things. First, my headaches aren't from the LDN (I've been off them a week ... typically my LDN headaches are gone within two days off stopping. Second, my Lyme is back. I mean this I already knew, but the herx reaction today just proves it without a shadow of a doubt.

I have "nothing" unusual to take tonight. I worked it like this on purpose when I scheduled the first day of the Borrelia Series.

Anyways, there ya go. I'm a herxing.

Thursday, October 6, 2011

HBOT

So yesterday, I had my first HBOT dive. I'm going to try to describe it as best as I can.


So I arrived at the office and was taken back to the HBOT room. Then, I was asked to take off my shoes and my shirt. I had on two shirts and was told that the capsule got kind of hot. So I took off my work shirt and left on my long sleeve shirt. They took my temp, pulse ox, blood pressure and weight. Then, I stepped into this machine. I put my hand on "M's" shoulder and stepped up. This was quite difficult, but I grabbed the bar on the wall and pulled myself in. I stood up and slowly sat down. (kind of like this:)


http://www.rimlandcenter.com/photos/thumbs/k.jpg

Now, I'm not quite sure how I thought that Oxygen would be delivered, but color me surprised when I saw the oxygen nasal cannula, the FLARED nasal cannula.

So, "M" asked me to put the plugs up my nose and the tubing around my ears. So I did it as best as I could seeing as how their was already Oxygen blowing out of the cannula. The only thing that got me through this step was thinking of a few friends that I know deal with these things on a daily basis.

I laid down and positioned my head so I could see out of the clear opening. M handed me a door bell and said that if I needed her that I could press the button and she would be right there, decompress the chamber and let me out.


I put in my ear phones with MP3 player and pressed play. M zipped up the chamber and I was good. I was surprisingly good. I thought, oh this isn't that bad. Then I I started feeling something. My ears. I could feel them and hear the pressure through my music. It was uncomfortable. I started getting nervous. This was the 2nd minute in. I started giving myself a pep talk. It was one of those, "Oh you so got this. Get over the fear woman. You are spider woman. You can do this. You did the needle in your legs test ... this is nothing ... Come on Jennifer, get it together. Don't press that button Jennifer. GET IT TOGETHER." Well it went something like that for about 10 minutes and then I settled down.

I listened to some of my favorite songs and sang ... loudly. Well I guess it was loud, I couldn't hear it through the noise of the machine and my ear phones. I toggled between Kate Voegele's Lift Me Up and Sweet Silver Lining. Also enjoyed listening to a little Marty Casey & Lovehammers. It worked. I managed to stay in for the entire planned 60 minutes and the 10 minute decompression time.

As soon as the 60 minutes were up, M came back and scared the boogers out of me. I had my eyes closed and was singing. I opened my eyes momentarily and saw her standing at the opening. She told me (her words were very muffled) that she was going to start depressurizing the chamber. Then I heard it hissing. After it was finished, she unzipped the chamber and helped me out.

It was by far the weirdest thing I've done. I'm not sure if it was the chamber or the IVs or the Borrelia series or what, but this morning I woke up clear headed and without a headache for the first time in a couple of weeks.

Yah! I go back on Tuesday.

Wednesday, October 5, 2011

Hyperbaric Oxygen Therapy (HBOT)

I had my first HBOT treatment today. I really wasn't quite sure what to expect except that I'd be getting into this small space for at least an hour. I want to do the "story" justice so I will wait until tomorrow when I have more time to post about it. However, the tease:

I had my HBOT.
I freaked out.
I fussed at myself for freaking out.
Then, I sang, LOUDLY for about an hour.
Going back next week for a 90 minute "dive."

Tomorrow you'll get more details. I'd post a photo, but I didn't have a camera in there with me!
Maybe on Tuesday I'll take my phone in there and take a photo. I assure you, it's kind of funny.

Tuesday, October 4, 2011

IV today

Today was my first IV since October 30, 2010! After my due diligence, my nurse got my IV started on the very first try. She made it look easy. Of course I started prepping at 6:15 this morning. I drank 24 oz in one hour and then slowed down after I started peeing like a Russian Mule.

In any case, I got to the IV room a little after 1:30 and the IV was inserted right about 2pm. That's pretty good timing. The other good timing was the time of the drip. Used to take 3 to 4 hours with an IV (now it would take about 2 hours on the picc line), but today ... it took maybe 2 hours and 5 minutes. I got a little nervous after the first hour and the line of fluids was still near the top. However, it was sped up and I started being saturated with the fluids!

I must say, I felt differently than I did one year ago. It was terrible. I felt like a horse sat on my chest and farted. Wait, did I just say that out loud? I felt like a horse sat on my chest. It was as if something heavy was sitting there and making me warm and heavy. It was almost a good feeling, but not if that makes sense. The only thing I can kind of compare it to is the way I feel after I've taken a dose of NyQuil. Warm and fuzzy - but with the IV, I felt terrible. I had to pee every 15 minutes, but tried not to b.c it is kind of pain to get up and go down the hall to pee. Plus everytime I walk, the drip slows down. Then on top of it, I had a headache (probably from the B Vitamins).

Now the interesting thing. I'm not sure why this is, but before when I'd get the IVs ... I'd have really florescent urine. It was bright yellow. Today, it was clear. Now I know I drank a lot of water and it should be clear normally, but with all the extra B vitamins in that bag ... one would think that my pee would be the bright yellow color. However, it was not. So I like to think I absorbed every gram of fluid and it's doing exactly what it's supposed to do (instead of me just peeing it out).

Well, it's time to get in bed. I'm exhausted. Hardly can keep my eyes open. Tomorrow I hit the Hyperbaric Chamber. That should be interesting. My first time.

Over And Out! (10/4 - or as I say .. what October 4th? - yes it's a small amount of irony that today is October 4th. means nothing ... 10/4 and yes, I'll look at this tomorrow and go ... what in the world happened to my writing? What was wrong with me ... it's the IV talking!

Monday, October 3, 2011

Borrelia Series

The company that makes Borrelia Series says, "Borrelia Remedy has been formulated to address the symptoms related to infection created by Borrelia Burgdorfi, Babesia Microti and Ehrlichia. The "Series Method" uses nosodes that range from high potency to a low potency. Each potency is administered singly over a period of weeks in a manner that resolves a deep, chronic disease state. This treatment was found to produce results that were extremely gratifying."

This is what it looks like.



Photo is courtesy of: https://www.immunematrix.com/store/images/P/Borellia.jpg

I will start off using Vial 1 tonight. Then every three days take the next number vial. If I have a herx reaction, I will use four boxes of these. After I finish the 10 vials, I will start box number 2. I will start off with vial number 10 and go backwards. Each box will reverse the way I take it until I am done with the four boxes. That is IF I get a herx reaction from the first box.

I start my first vial tonight. Yes I'm worried about how I will respond. It suggests that between vials 2 & 4 I won't feel so well. We'll see how it goes.

BTW: Last night was the 2nd night not on LDN and I still have a headache. LDN might not be causing my headaches, might be the Lyme.

Sunday, October 2, 2011

The Lymie Slide

So in August I started really taking notes on how I was feeling. I had noticed back at the end of July that I really wasn't feeling as well as I had been. So I took somewhat detailed notes. The other day I was putting them all together to bring to my appointment Saturday and realized something terrible. I had done the Lymie Slide.

One day of fatigue during a month is one thing, but during week one of August I had three days of fatigue. In week two, there were no fatigue days. However, I did have two days of headaches. In week three of August, I had two straight days of fatigue and one day of headaches. In the month of August: I had 6 days of headaches and 5 days of fatigue and those two things didn't fall on the same day. So out of 31 days, 11 of them I either had severe fatigue or severe headaches. I also had allergy symptoms including sore throat, sneezing, coughing, stuffy nose, etc. There were four or five other symptoms that I hadn't had in a while either.

Then September hit. I also had 6 headache days and 6 fatigue days. (so in 61 days, I had 12 headache days and 11 fatigue days). Four of those fatigue days were in a row and one of them was so bad that in the middle of the day I fell asleep for 3 straight hours. That hasn't happened in I don't know how long. Then to top it off, this past week I have experienced ankle, hip and hand pain. So I was very happy to be able to talk with my LLMD about them today.

Between my symptoms and blood work, we decided it was most likely that my immune system is depressed again. Therefore, we need to boost it. We've been trying to boost it with LDN, but it obviously either isn't working or I'm not taking enough of it to be beneficial. To top it off, I've been having those headaches. We aren't sure if it is Lyme or if it is LDN so I am to stop it for about two weeks to see if I notice a difference in the frequency of headaches. I'm to restart either Beta Glucan or another supplement that I have that is supposed to boost immune support.

My treatment plan for the next few weeks isn't really all that complicated. I'm to continue everything I've been doing, but increase my oral vitamin C and exchange the LDN for the other stuff. Then I'm too add this stuff called Borrelia Series. I really am not quite sure what it does, but in 2007 I did the one called Bartonella Series. I may Herx on this. I may not. Basically if I herx, it means that my immune system is depressed enough that the borrelia bacteria has come back out to play. If it IS back for fun & games, I have to do a little killing action by continuing the series for 4 boxes.

In addition to these series of vials, I will be doing 2 or 3 IVs. I've done these IVs before and if I herx on them, I will also know if the borrelia is back to play. I had them when the Lyme wasn't in action at all and basically felt no bad effects from the IV. I was supposed to get one today, but wasn't hydrated well enough for them to get an IV stick. So on Tuesday I go to get a treatment.

In addition to these, my doctor wants me to get HBOT. I have heard this term many times and for those of you that don't know what it is, it is the Hyperbaric Oxygen Treatment Chamber. I get into a small thing that gives me lots of Oxygen? Honestly I really don't know what it does, but it's supposed to help. I'm supposed to do 4 days in a row at 90 minutes each "dive." So all in all:

2 to 3 IV's of Vitamin C
4 HBOT treatments
10 vials (up to 40 vials) of Borrelia Series
Mixing it up for two weeks other supplement instead of the LDN Cream.
Increasing Oral Vitamin C.
Keeping on the other supplements I'm already on.

OOOOO and do this saliva test. Yeah I have to spit into four vials. Weird huh? Almost as weird as the time I had pee in my fridge!

And while I know they don't read the blog: I have to give a shout out to a few people that made today go a little smoother.

1. Dr. P. You are my hero. I would not be alive without you.

2. Jennifer (IV lady). Thanks for not sticking me more than once after you realized I wasn't hydrated enough.

3. Rob. to my best husband (and my only husband!), you listen even when I think you're not listening. You know what I need even before I do. You rock!

4.John - to my best friend, you make me snort when I laugh even when I am ready to cry. You give the best hugs especially when I need them.

5. Alisa, Whitney and Melisa, you three girls gave me the Lyme support I needed today. I don't tell you enough how much you three mean to me. I'm blessed to have the best Lyme friends there are.

Saturday, October 1, 2011

Feeling Discouraged

My LLMD appointment was today.

I'm Feeling Discouraged, but Encouraged if that makes sense at all.

I'm too tired to explain right now.

Explain more tomorrow.

Please pray. Thanks.